THE OFFICIAL PARENT’S SOURCEBOOK
on
J AMES N. P ARKER , M.D. AND P HILIP M. P ARKER , P H .D., E DITORS
ii
ICON Health Publications ICON Group International, Inc. 4370 La Jolla Village Drive, 4th Floor San Diego, CA 92122 USA Copyright Ó2002 by ICON Group International, Inc. Copyright Ó2002 by ICON Group International, Inc. All rights reserved. This book is protected by copyright. No part of it may be reproduced, stored in a retrieval system, or transmitted in any form or by any means, electronic, mechanical, photocopying, recording or otherwise, without written permission from the publisher. Printed in the United States of America. Last digit indicates print number: 10 9 8 7 6 4 5 3 2 1
Publisher, Health Care: Tiffany LaRochelle Editor(s): James Parker, M.D., Philip Parker, Ph.D. Publisher’s note: The ideas, procedures, and suggestions contained in this book are not intended as a substitute for consultation with your child’s physician. All matters regarding your child’s health require medical supervision. As new medical or scientific information becomes available from academic and clinical research, recommended treatments and drug therapies may undergo changes. The authors, editors, and publisher have attempted to make the information in this book up to date and accurate in accord with accepted standards at the time of publication. The authors, editors, and publisher are not responsible for errors or omissions or for consequences from application of the book, and make no warranty, expressed or implied, in regard to the contents of this book. Any practice described in this book should be applied by the reader in accordance with professional standards of care used in regard to the unique circumstances that may apply in each situation, in close consultation with a qualified physician. The reader is advised to always check product information (package inserts) for changes and new information regarding dose and contraindications before administering any drug or pharmacological product. Caution is especially urged when using new or infrequently ordered drugs, herbal remedies, vitamins and supplements, alternative therapies, complementary therapies and medicines, and integrative medical treatments. Cataloging-in-Publication Data Parker, James N., 1961Parker, Philip M., 1960The Official Parent’s Sourcebook on Autism: A Revised and Updated Directory for the Internet Age/James N. Parker and Philip M. Parker, editors p. cm. Includes bibliographical references, glossary and index. ISBN: 0-597-83043-6 1. Autism-Popular works. I. Title.
iii
Disclaimer This publication is not intended to be used for the diagnosis or treatment of a health problem or as a substitute for consultation with licensed medical professionals. It is sold with the understanding that the publisher, editors, and authors are not engaging in the rendering of medical, psychological, financial, legal, or other professional services. References to any entity, product, service, or source of information that may be contained in this publication should not be considered an endorsement, either direct or implied, by the publisher, editors, or authors. ICON Group International, Inc., the editors, or the authors are not responsible for the content of any Web pages nor publications referenced in this publication.
Copyright Notice If a physician wishes to copy limited passages from this sourcebook for parent use, this right is automatically granted without written permission from ICON Group International, Inc. (ICON Group). However, all of ICON Group publications are copyrighted. With exception to the above, copying our publications in whole or in part, for whatever reason, is a violation of copyright laws and can lead to penalties and fines. Should you want to copy tables, graphs or other materials, please contact us to request permission (e-mail:
[email protected]). ICON Group often grants permission for very limited reproduction of our publications for internal use, press releases, and academic research. Such reproduction requires confirmed permission from ICON Group International Inc. The disclaimer above must accompany all reproductions, in whole or in part, of this sourcebook.
iv
Dedication To the healthcare professionals dedicating their time and efforts to the study of autism.
Acknowledgements The collective knowledge generated from academic and applied research summarized in various references has been critical in the creation of this sourcebook which is best viewed as a comprehensive compilation and collection of information prepared by various official agencies which directly or indirectly are dedicated to autism. All of the Official Parent’s Sourcebooks draw from various agencies and institutions associated with the United States Department of Health and Human Services, and in particular, the Office of the Secretary of Health and Human Services (OS), the Administration for Children and Families (ACF), the Administration on Aging (AOA), the Agency for Healthcare Research and Quality (AHRQ), the Agency for Toxic Substances and Disease Registry (ATSDR), the Centers for Disease Control and Prevention (CDC), the Food and Drug Administration (FDA), the Healthcare Financing Administration (HCFA), the Health Resources and Services Administration (HRSA), the Indian Health Service (IHS), the institutions of the National Institutes of Health (NIH), the Program Support Center (PSC), and the Substance Abuse and Mental Health Services Administration (SAMHSA). In addition to these sources, information gathered from the National Library of Medicine, the United States Patent Office, the European Union, and their related organizations has been invaluable in the creation of this sourcebook. Some of the work represented was financially supported by the Research and Development Committee at INSEAD. This support is gratefully acknowledged. Finally, special thanks are owed to Tiffany LaRochelle for her excellent editorial support.
v
About the Editors James N. Parker, M.D. Dr. James N. Parker received his Bachelor of Science degree in Psychobiology from the University of California, Riverside and his M.D. from the University of California, San Diego. In addition to authoring numerous research publications, he has lectured at various academic institutions. Dr. Parker is the medical editor for the Official Parent’s Sourcebook series published by ICON Health Publications.
Philip M. Parker, Ph.D. Philip M. Parker is the Eli Lilly Chair Professor of Innovation, Business and Society at INSEAD (Fontainebleau, France and Singapore). Dr. Parker has also been Professor at the University of California, San Diego and has taught courses at Harvard University, the Hong Kong University of Science and Technology, the Massachusetts Institute of Technology, Stanford University, and UCLA. Dr. Parker is the associate editor for the Official Parent’s Sourcebook series published by ICON Health Publications.
vi
About ICON Health Publications In addition to autism, Official Parent’s Sourcebooks are available for the following related topics: ·
The Official Patient's Sourcebook on Asperger Syndrome
·
The Official Patient's Sourcebook on Attention Deficit Hyperactivity Disorder
·
The Official Patient's Sourcebook on Cerebral Palsy
·
The Official Patient's Sourcebook on Dysgraphia
·
The Official Patient's Sourcebook on Dyslexia
·
The Official Patient's Sourcebook on Gerstmann
·
The Official Patient's Sourcebook on Septo-optic Dysplasia
To discover more about ICON Health Publications, simply check with your preferred online booksellers, including Barnes & Noble.com and Amazon.com which currently carry all of our titles. Or, feel free to contact us directly for bulk purchases or institutional discounts: ICON Group International, Inc. 4370 La Jolla Village Drive, Fourth Floor San Diego, CA 92122 USA Fax: 858-546-4341 Web site: www.icongrouponline.com/health
Contents vii
Table of Contents INTRODUCTION...................................................................................... 1
Overview............................................................................................................... 1 Organization......................................................................................................... 3 Scope ..................................................................................................................... 3 Moving Forward................................................................................................... 4
PART I: THE ESSENTIALS ................................................. 7 CHAPTER 1. THE ESSENTIALS ON AUTISM: GUIDELINES ..................... 9
Overview............................................................................................................... 9 What Are Pervasive Developmental Disorders?................................................ 10 What Is Autism? ................................................................................................ 11 Why Do Some People Get Autism?.................................................................... 12 How Many People Have Autism?...................................................................... 13 Who Usually Gets Autism? ............................................................................... 13 When Do People Usually Show Signs of Autism? ............................................ 13 Is There a Link Between Autism and Vaccines? ................................................ 14 Do All People with Autism Have the Same Symptoms? ................................... 15 What Conditions Are Included in the Autism Spectrum Disorder (ASD) Category?............................................................................................................ 15 Are There Other Things That Might Be Signs of Autism? ............................... 16 When Should a Doctor Evaluate a Child for Autism? ....................................... 17 Is There a Cure for Autism? ............................................................................... 18 What Are the Treatments for Autism? .............................................................. 18 What Special Services Are Available?................................................................ 19 What Is Autism? ................................................................................................ 20 What Are Some Common Signs of Autism? ...................................................... 21 How Is Autism Diagnosed? ............................................................................... 21 What Causes Autism? ........................................................................................ 22 What Role Does Genetics Play? ......................................................................... 23 Do Symptoms of Autism Change Over Time?................................................... 23 How Can Autism Be Treated? ........................................................................... 24 What Aspects of Autism Are Being Studied? .................................................... 24 Where Can I Get More Information? ................................................................. 25 More Guideline Sources ..................................................................................... 28 Vocabulary Builder............................................................................................. 42
CHAPTER 2. SEEKING GUIDANCE ....................................................... 45
Overview............................................................................................................. 45 Associations and Autism.................................................................................... 45 Finding More Associations................................................................................. 66 Finding Doctors.................................................................................................. 67 Finding a Neurologist......................................................................................... 69 Selecting Your Doctor ........................................................................................ 69
viii Contents
Working with Your Child’s Doctor.................................................................... 69 Broader Health-Related Resources ..................................................................... 70 Vocabulary Builder............................................................................................. 71
CHAPTER 3. CLINICAL TRIALS AND AUTISM ...................................... 73
Overview............................................................................................................. 73 Recent Trials on Autism..................................................................................... 76 Benefits and Risks............................................................................................... 84 Keeping Current on Clinical Trials.................................................................... 87 General References.............................................................................................. 88 Vocabulary Builder............................................................................................. 89
PART II: ADDITIONAL RESOURCES AND ADVANCED MATERIAL.................................................. 91 CHAPTER 4. STUDIES ON AUTISM ....................................................... 93
Overview............................................................................................................. 93 The Combined Health Information Database ..................................................... 93 Federally-Funded Research on Autism ............................................................ 103 E-Journals: PubMed Central ............................................................................ 119 The National Library of Medicine: PubMed .................................................... 120 Vocabulary Builder........................................................................................... 122
CHAPTER 5. PATENTS ON AUTISM .................................................... 127
Overview........................................................................................................... 127 Patents on Autism ............................................................................................ 128 Patent Applications on Autism ........................................................................ 135 Keeping Current ............................................................................................... 140 Vocabulary Builder........................................................................................... 140
CHAPTER 6. BOOKS ON AUTISM ....................................................... 145
Overview........................................................................................................... 145 Book Summaries: Federal Agencies .................................................................. 145 Book Summaries: Online Booksellers ............................................................... 154 The National Library of Medicine Book Index ................................................. 155 Chapters on Autism.......................................................................................... 159 Directories......................................................................................................... 170 General Home References ................................................................................. 172 Vocabulary Builder........................................................................................... 173
CHAPTER 7. MULTIMEDIA ON AUTISM ............................................. 175
Overview........................................................................................................... 175 Video Recordings .............................................................................................. 175 Audio Recordings ............................................................................................. 178 Bibliography: Multimedia on Autism .............................................................. 179
CHAPTER 8. PERIODICALS AND NEWS ON AUTISM .......................... 183
Overview........................................................................................................... 183 News Services & Press Releases ....................................................................... 183
Contents
ix
Newsletter Articles ........................................................................................... 192 Academic Periodicals covering Autism ............................................................ 194 Vocabulary Builder........................................................................................... 198
CHAPTER 9. PHYSICIAN GUIDELINES AND DATABASES ................... 199
Overview........................................................................................................... 199 NIH Guidelines................................................................................................. 199 Autism Question and Answers for Health Care Professionals ........................ 200 What Is the Prevalence of Autism? .................................................................. 201 What Causes Autism? ...................................................................................... 201 Is There a Link Between Autism and Vaccines? .............................................. 202 What Is the Clinical Phenotype of Autism? ..................................................... 203 What Disorders Does PDD or ASD Include? ................................................. 203 What Is My Role As a Health Care Professional in Caring for a Child with Autism? ............................................................................................................ 204 What Are the Symptoms of Autism? ............................................................... 204 When Is the Usual Onset of Symptoms?.......................................................... 205 Are There Any Indications that Require Immediate Evaluation for Autism?. 206 What Other Parental Concerns Should Prompt a Health Care Provider to Evaluate a Child for Autism?........................................................................... 206 Do Parents Typically Overreact When They Think Their Child Has a Problem? .......................................................................................................................... 207 How Can I Determine Whether a Parental Concern Actually Constitutes a Social or Behavioral Development Problem?.................................................... 208 What Is the Typical Process for Diagnosing a Child with Autism? ................ 208 Are There Any Screening or Diagnostics Tools I Can Use to Help Identify Children Who Might Need Additional Evaluation? ........................................ 209 What Do I Do Once a Child in My Care Is Diagnosed with Autism? ............ 210 Is There a Cure for Autism? ............................................................................. 211 Are There Treatments for Autism? .................................................................. 211 Where Can I Go for More Information about Autism?.................................... 212 Are There Other Autism Information Resources I Can Consult? ................... 213 NIH Databases.................................................................................................. 213 Other Commercial Databases ........................................................................... 223 The Genome Project and Autism...................................................................... 224 Specialized References....................................................................................... 228 Vocabulary Builder........................................................................................... 229
CHAPTER 10. DISSERTATIONS ON AUTISM ....................................... 231
Overview........................................................................................................... 231 Dissertations on Autism................................................................................... 231 Keeping Current ............................................................................................... 233
PART III. APPENDICES .................................................. 235 APPENDIX A. RESEARCHING YOUR CHILD’S MEDICATIONS ........... 237
Overview........................................................................................................... 237
x
Contents
Your Child’s Medications: The Basics.............................................................. 238 Learning More about Your Child’s Medications ............................................. 239 Commercial Databases...................................................................................... 241 Contraindications and Interactions (Hidden Dangers) ................................... 242 A Final Warning .............................................................................................. 242 General References............................................................................................ 243 Vocabulary Builder........................................................................................... 244
APPENDIX B. RESEARCHING ALTERNATIVE MEDICINE ................... 245
Overview........................................................................................................... 245 What Is CAM? ................................................................................................. 246 What Are the Domains of Alternative Medicine?............................................ 246 Can Alternatives Affect My Child’s Treatment?............................................. 250 Finding CAM References on Autism ............................................................... 250 Additional Web Resources................................................................................ 260 General References............................................................................................ 262
APPENDIX C. RESEARCHING NUTRITION ......................................... 265
Overview........................................................................................................... 265 Food and Nutrition: General Principles........................................................... 266 Finding Studies on Autism .............................................................................. 270 Federal Resources on Nutrition........................................................................ 274 Additional Web Resources................................................................................ 275 Vocabulary Builder........................................................................................... 276
APPENDIX D. FINDING MEDICAL LIBRARIES.................................... 279
Overview........................................................................................................... 279 Preparation ....................................................................................................... 279 Finding a Local Medical Library ...................................................................... 280 Medical Libraries Open to the Public............................................................... 280
APPENDIX E. YOUR CHILD’S RIGHTS AND INSURANCE ................... 287
Overview........................................................................................................... 287 Your Child’s Rights as a Patient ...................................................................... 287 Parent Responsibilities ..................................................................................... 291 Choosing an Insurance Plan............................................................................. 292 Medicaid ........................................................................................................... 294 NORD’s Medication Assistance Programs ..................................................... 294 Additional Resources ........................................................................................ 295
APPENDIX F. MORE ON AUTISM AND GENES ................................... 297
Overview........................................................................................................... 297 What Causes Autism? ...................................................................................... 297 What Are Genes?.............................................................................................. 298 Why Study Genes? ........................................................................................... 298 What Have CPEA Researchers Found by Studying Genes and Autism? ....... 299 What Does the Future Hold for Studies of Genes and Autism? ...................... 301 Where Can I Go for More Information about Autism?.................................... 302
APPENDIX G. MORE ON THE MMR VACCINE AND AUTISM ........... 303
Contents
xi
Overview........................................................................................................... 303 Why Do People Think That Vaccines Can Cause Autism? ............................. 304 How Do Vaccines Help the Immune System Defend the Body?...................... 304 Why Do Many Doctors and Scientists Believe That the MMR Vaccine Does Not Cause Autism? ................................................................................................. 305 Current Research on the Possible Link Between the MMR Vaccine and Autism .......................................................................................................................... 307 Aren’t the Diseases Prevented by the MMR Vaccine Mild, When Compared to the Life-Long Symptoms of Autism?................................................................ 308 Should My Child Have the MMR Vaccine? .................................................... 309 For More Information on Autism..................................................................... 310
ONLINE GLOSSARIES.................................................... 311 Online Dictionary Directories.......................................................................... 312
AUTISM GLOSSARY ....................................................... 313 General Dictionaries and Glossaries ................................................................ 325
INDEX................................................................................... 327
Introduction
1
INTRODUCTION Overview Dr. C. Everett Koop, former U.S. Surgeon General, once said, “The best prescription is knowledge.”1 The Agency for Healthcare Research and Quality (AHRQ) of the National Institutes of Health (NIH) echoes this view and recommends that all parents incorporate education into the treatment process. According to the AHRQ: Finding out more about your [child’s] condition is a good place to start. By contacting groups that support your [child’s] condition, visiting your local library, and searching on the Internet, you can find good information to help guide your decisions for your [child’s] treatment. Some information may be hard to find—especially if you don’t know where to look.2 As the AHRQ mentions, finding the right information is not an obvious task. Though many physicians and public officials had thought that the emergence of the Internet would do much to assist parents in obtaining reliable information, in March 2001 the National Institutes of Health issued the following warning: The number of Web sites offering health-related resources grows every day. Many sites provide valuable information, while others may have information that is unreliable or misleading.3 Quotation from http://www.drkoop.com. The Agency for Healthcare Research and Quality (AHRQ): http://www.ahcpr.gov/consumer/diaginfo.htm. 3 From the NIH, National Cancer Institute (NCI): http://cancertrials.nci.nih.gov/beyond/evaluating.html. 1 2
2
Autism
Since the late 1990s, physicians have seen a general increase in parent Internet usage rates. Parents frequently enter their children’s doctor’s offices with printed Web pages of home remedies in the guise of latest medical research. This scenario is so common that doctors often spend more time dispelling misleading information than guiding children through sound therapies. The Official Parent’s Sourcebook on Autism has been created for parents who have decided to make education and research an integral part of the treatment process. The pages that follow will tell you where and how to look for information covering virtually all topics related to autism, from the essentials to the most advanced areas of research. The title of this book includes the word “official.” This reflects the fact that the sourcebook draws from public, academic, government, and peerreviewed research. Selected readings from various agencies are reproduced to give you some of the latest official information available to date on autism. Given parents’ increasing sophistication in using the Internet, abundant references to reliable Internet-based resources are provided throughout this sourcebook. Where possible, guidance is provided on how to obtain free-ofcharge, primary research results as well as more detailed information via the Internet. E-book and electronic versions of this sourcebook are fully interactive with each of the Internet sites mentioned (clicking on a hyperlink automatically opens your browser to the site indicated). Hard copy users of this sourcebook can type cited Web addresses directly into their browsers to obtain access to the corresponding sites. Since we are working with ICON Health Publications, hard copy Sourcebooks are frequently updated and printed on demand to ensure that the information provided is current. In addition to extensive references accessible via the Internet, every chapter presents a “Vocabulary Builder.” Many health guides offer glossaries of technical or uncommon terms in an appendix. In editing this sourcebook, we have decided to place a smaller glossary within each chapter that covers terms used in that chapter. Given the technical nature of some chapters, you may need to revisit many sections. Building one’s vocabulary of medical terms in such a gradual manner has been shown to improve the learning process. We must emphasize that no sourcebook on autism should affirm that a specific diagnostic procedure or treatment discussed in a research study, patent, or doctoral dissertation is “correct” or your child’s best option. This sourcebook is no exception. Each child is unique. Deciding on appropriate options is always up to parents in consultation with their children’s physicians and healthcare providers.
Introduction
3
Organization This sourcebook is organized into three parts. Part I explores basic techniques to researching autism (e.g. finding guidelines on diagnosis, treatments, and prognosis), followed by a number of topics, including information on how to get in touch with organizations, associations, or other parent networks dedicated to autism. It also gives you sources of information that can help you find a doctor in your local area specializing in treating autism. Collectively, the material presented in Part I is a complete primer on basic research topics for autism. Part II moves on to advanced research dedicated to autism. Part II is intended for those willing to invest many hours of hard work and study. It is here that we direct you to the latest scientific and applied research on autism. When possible, contact names, links via the Internet, and summaries are provided. It is in Part II where the vocabulary process becomes important as authors publishing advanced research frequently use highly specialized language. In general, every attempt is made to recommend “freeto-use” options. Part III provides appendices of useful background reading covering autism or related disorders. The appendices are dedicated to more pragmatic issues facing parents. Accessing materials via medical libraries may be the only option for some parents, so a guide is provided for finding local medical libraries which are open to the public. Part III, therefore, focuses on advice that goes beyond the biological and scientific issues facing children with autism and their families.
Scope While this sourcebook covers autism, doctors, research publications, and specialists may refer to your child’s condition using a variety of terms. Therefore, you should understand that autism is often considered a synonym or a condition closely related to the following: ·
Autism
·
Autistic Disorder/autism Spectrum
·
Autistic-like/autistic Tendencies
·
Childhood Autism
·
Early Infantile Autism
4
Autism
·
High-functioning Autism
·
Infantile Autism
·
Kanner Syndrome
·
Kanner's Autism
·
Low-functioning Autism
·
Pervasive Developmental Delay
·
Pervasive Developmental Disorder
In addition to synonyms and related conditions, physicians may refer to autism using certain coding systems. The International Classification of Diseases, 9th Revision, Clinical Modification (ICD-9-CM) is the most commonly used system of classification for the world’s illnesses. Your physician may use this coding system as an administrative or tracking tool. The following classification is commonly used for autism:4 ·
299.0 infantile autism
·
f84.0 autistic disorder (dsm-iv coded 299.0 autistic disorder)
For the purposes of this sourcebook, we have attempted to be as inclusive as possible, looking for official information for all of the synonyms relevant to autism. You may find it useful to refer to synonyms when accessing databases or interacting with healthcare professionals and medical librarians.
Moving Forward Since the 1980s, the world has seen a proliferation of healthcare guides covering most illnesses. Some are written by parents, patients, or their family members. These generally take a layperson’s approach to understanding and coping with an illness or disorder. They can be uplifting, encouraging, and highly supportive. Other guides are authored by physicians or other healthcare providers who have a more clinical outlook. Each of these two styles of guide has its purpose and can be quite useful.
4 This list is based on the official version of the World Health Organization’s 9th Revision, International Classification of Diseases (ICD-9). According to the National Technical Information Service, “ICD-9CM extensions, interpretations, modifications, addenda, or errata other than those approved by the U.S. Public Health Service and the Health Care Financing Administration are not to be considered official and should not be utilized. Continuous maintenance of the ICD-9-CM is the responsibility of the federal government.”
Introduction
5
As editors, we have chosen a third route. We have chosen to expose you to as many sources of official and peer-reviewed information as practical, for the purpose of educating you about basic and advanced knowledge as recognized by medical science today. You can think of this sourcebook as your personal Internet age reference librarian. Why “Internet age”? When their child has been diagnosed with autism, parents will often log on to the Internet, type words into a search engine, and receive several Web site listings which are mostly irrelevant or redundant. Parents are left to wonder where the relevant information is, and how to obtain it. Since only the smallest fraction of information dealing with autism is even indexed in search engines, a non-systematic approach often leads to frustration and disappointment. With this sourcebook, we hope to direct you to the information you need that you would not likely find using popular Web directories. Beyond Web listings, in many cases we will reproduce brief summaries or abstracts of available reference materials. These abstracts often contain distilled information on topics of discussion. While we focus on the more scientific aspects of autism, there is, of course, the emotional side to consider. Later in the sourcebook, we provide a chapter dedicated to helping you find parent groups and associations that can provide additional support beyond research produced by medical science. We hope that the choices we have made give you and your child the most options in moving forward. In this way, we wish you the best in your efforts to incorporate this educational approach into your child’s treatment plan. The Editors
7
PART I: THE ESSENTIALS
ABOUT PART I Part I has been edited to give you access to what we feel are “the essentials” on autism. The essentials typically include a definition or description of the condition, a discussion of who it affects, the signs or symptoms, tests or diagnostic procedures, and treatments for disease. Your child’s doctor or healthcare provider may have already explained the essentials of autism to you or even given you a pamphlet or brochure describing the condition. Now you are searching for more in-depth information. As editors, we have decided, nevertheless, to include a discussion on where to find essential information that can complement what the doctor has already told you. In this section we recommend a process, not a particular Web site or reference book. The process ensures that, as you search the Web, you gain background information in such a way as to maximize your understanding.
Guidelines
9
CHAPTER 1. THE ESSENTIALS ON AUTISM: GUIDELINES Overview Official agencies, as well as federally-funded institutions supported by national grants, frequently publish a variety of guidelines on autism. These are typically called “Fact Sheets” or “Guidelines.” They can take the form of a brochure, information kit, pamphlet, or flyer. Often they are only a few pages in length. The great advantage of guidelines over other sources is that they are often written with the parent in mind. Since new guidelines on autism can appear at any moment and be published by a number of sources, the best approach to finding guidelines is to systematically scan the Internetbased services that post them.
The National Institutes of Health (NIH)5 The National Institutes of Health (NIH) is the first place to search for relatively current guidelines and fact sheets on autism. Originally founded in 1887, the NIH is one of the world’s foremost medical research centers and the federal focal point for medical research in the United States. At any given time, the NIH supports some 35,000 research grants at universities, medical schools, and other research and training institutions, both nationally and internationally. The rosters of those who have conducted research or who have received NIH support over the years include the world’s most illustrious scientists and physicians. Among them are 97 scientists who have won the Nobel Prize for achievement in medicine.
5
Adapted from the NIH: http://www.nih.gov/about/NIHoverview.html.
10 Autism
There is no guarantee that any one Institute will have a guideline on a specific medical condition, though the National Institutes of Health collectively publish over 600 guidelines for both common and rare disorders. The best way to access NIH guidelines is via the Internet. Although the NIH is organized into many different Institutes and Offices, the following is a list of key Web sites where you are most likely to find NIH clinical guidelines and publications dealing with autism and associated conditions: ·
Office of the Director (OD); guidelines consolidated across agencies available at http://www.nih.gov/health/consumer/conkey.htm
·
National Library of Medicine (NLM); extensive encyclopedia (A.D.A.M., Inc.) with guidelines available at http://www.nlm.nih.gov/medlineplus/healthtopics.html
·
National Institute of Neurological Disorders and Stroke (NINDS); http://www.ninds.nih.gov/health_and_medical/disorder_index.htm
·
National Institute of Child Health and Human Development (NICHD); guidelines available at http://www.nichd.nih.gov/publications/pubskey.cfm
Among those listed above, the National Institute of Child Health and Human Development (NICHD) is especially noteworthy. The mission of the NICHD, a part of the National Institutes of Health (NIH), is to support and conduct research on topics related to the health of children, adults, families, and populations. NICHD research focuses on the idea that events that happen prior to and throughout pregnancy as well as during childhood have a great impact on the health and well-being of adults. The following guideline is one the NICHD provides concerning autism.6
What Are Pervasive Developmental Disorders?7 The diagnostic category pervasive developmental disorders (PDD) refers to a group of disorders characterized by delays in the development of multiple basic functions including socialization and communication. Parents may note symptoms as early as infancy and typically onset is prior to 3 years of age. Symptoms may include communication problems such as using and understanding language; difficulty relating to people, objects, and events; This and other passages have been adapted from the NIH and NICHD: http://www.nichd.nih.gov/default.htm. “Adapted” signifies that the text has been reproduced with attribution, with some or no editorial adjustments. 7 Adapted from The National Institute of Neurological Disorders and Stroke (NINDS): http://www.ninds.nih.gov/health_and_medical/disorders/pdd.htm 6
Guidelines 11
unusual play with toys and other objects; difficulty with changes in routine or familiar surroundings, and repetitive body movements or behavior patterns. Autism (a developmental brain disorder characterized by impaired social interaction and communication skills, and limited range of activities and interests) is the most characteristic and best studied PDD. Other types of PDD include Asperger’s syndrome, childhood disintegrative disorder, Rett’s syndrome, and PDD not otherwise specified. Children with PDD vary widely in abilities, intelligence, and behaviors. Some children do not speak at all, others speak in limited phrases or conversations, and some have relatively normal language development. Repetitive play skills and limited social skills are generally evident as well. Unusual responses to sensory information - loud noises, lights - are also common.
What Is Autism?8 The word “autism” has been in the news a lot lately. Congress held hearings on it; members of congress have formed their own caucus to focus on it. Television news programs and newspapers have done feature stories on it. Even popular television shows like E/R and The West Wing have had story lines about autism. Autism is a complex biological disorder that generally lasts throughout a person’s life. It is called a developmental disability because it starts before age three, in the developmental period, and causes delays or problems with many different ways in which a person develops or grows. In most cases, autism causes problems with: ·
Communication, both verbal (spoken) and nonverbal (unspoken)
·
Social interactions with other people, both physical (such as hugging or holding) and verbal (such as having a conversation)
·
Routines or repetitive behaviors, like repeating words or actions over and over, obsessively following routines or schedules for their actions, or having very specific ways of arranging their belongings
The symptoms of the disorder cut off people with autism from the world around them.Children with autism may not want their mothers to hold them. Adults with autism may not look others in the eye. Some people with autism never learn how to talk. These behaviors not only make life difficult Adapted from The National Institute of Child Health and Human Development (NICHD): http://www.nichd.nih.gov/publications/pubs/autism/facts/index.htm. 8
12 Autism
for people who have autism, but also make life hard for their families, their health care providers, their teachers, and anyone who comes in contact with them. Researchers at the National Institute of Child Health and Human Development (NICHD), part of the National Institutes of Health (NIH), are trying to understand autism: what is it, what causes it, how to diagnose it, how to treat it. All these topics provide a focus for NICHD research. Autism is very complex. No two people with autism are exactly the same. No two people with autism respond to treatment in the same way. So research in autism is also very complex. Some people have compared solving the puzzle of autism to peeling an onion: new insights reveal themselves one layer at a time. Knowledge of autism is always changing, as research peels away more and more layers of this perplexing disease. This document explains what NICHD researchers who study autism have found out so far in their attempts to understand autism.
Why Do Some People Get Autism? Autism is not a disease that you “get,” the same way you can get the flu. Instead, scientists think autism has its beginnings before a person is even born. No one knows the exact cause or causes of autism, but scientists have some theories. Some of the researchers in the Network on the Neurobiology and Genetics of Autism: Collaborative Programs of Excellence in Autism (CPEA), a worldwide research network co-sponsored by the NICHD and the National Institute on Deafness and Other Communication Disorders (NIDCD), are focusing their efforts on possible genetic causes of autism. In 2000, scientists in the CPEA Network released the results of two studies that found genes were involved in autism. Additional papers were published in 2001 by CPEA researchers and other NIH-funded scientists as part of an international consortium on genetics research. These results lead researchers to believe that some people could have an error in their genes that makes them more likely to develop autism. The CPEA Network and other NICHDsupported researchers are also looking into other factors that could be involved in autism, in addition to genetics, including neurological, infectious, metabolic, immunologic, and environmental.
Guidelines 13
How Many People Have Autism? Currently, the exact number of cases of autism is not known, but estimates range from one-in-500 cases, to one-in-1,000 cases of autism diagnosed in the U.S. every year. Initial studies done in the 1960s pointed to four-to-five cases of autism in 10,000 people, which is why autism was once thought of as a rare condition. However, dramatic increases in autism disorders in the U.S. and throughout the world clearly show that autism is not rare. Keep in mind that changes in how autism is diagnosed, changes in what is considered autism, and changes in how autism cases are reported could account for some of the increases in the number of cases reported.
Who Usually Gets Autism? Current figures show that autism occurs in all racial, ethnic, and social groups. These statistics also show that boys are three-to-four times more likely to be affected by autism than girls are. In addition, if a family has one child with autism, there is a 5-to-10 percent chance that the family will have another child with autism. In contrast, if a family does not have a child with autism, there is only a 0.1-to-0.2 percent chance that the family will have a child with autism.
When Do People Usually Show Signs of Autism? In most cases, the symptoms of autism are measurable by certain screening tools at 18 months of age. However, parents and experts in autism treatment can usually detect symptoms before this time. In general, a formal diagnosis of autism can be made when a child is two, but is usually made when a child is between two and three, when he or she has a noticeable delay in developing language skills. Recent studies show that at least 20 percent of children with autism experienced a “regression,” as reported by their parents. This means that the children had a mostly normal development, but then had a loss of social or communication skills. To date, however, there is little information about this type of regression, such as the age it seems to start, how severe it is, and
14 Autism
what, if anything, triggers it. NICHD researchers are looking into a variety of possible causes for both early onset and regressive autism.
Is There a Link Between Autism and Vaccines? To date, there has been no conclusive, scientific evidence that any part of a vaccine or any combination of vaccines causes autism. There is also no proof that any material used to make or preserve vaccines plays a role in causing autism. In 2000, the Institute of Medicine (IOM) at the National Academy of Sciences, at the request of the Centers for Disease Control and Prevention (CDC) and the NIH, began a review of all the evidence related to the measles/mumps/rubella (MMR) vaccine and autism. This independent panel looked at completed studies, ongoing studies, and published medical and scientific papers, and heard testimony from experts on vaccines, autism, and digestive disorders to determine whether or not there was a link between autism and the MMR vaccine. The IOM concluded that the evidence it reviewed does not support a link between autism and the MMR vaccine. This and other conclusions from the IOM review were released in April 2001. For a full copy of the IOM report, visit the IOM Web site at www.iom.edu and look under “Recent Reports.” The American Academy of Pediatrics (AAP) recently held a conference on the MMR vaccine and autism. Parents, scientists, and practitioners presented information on this topic to a multidisciplinary panel of experts. Based on its review, the AAP also found that the available evidence does not support the theory that the MMR vaccine causes or contributes to autism or related disorders. The AAP policy statement appeared in the May 2001 issue of the journal Pediatrics. Because there is no proven data to suggest a link between autism and vaccines, the National Immunization Program at the CDC, along with the AAP and the American Academy of Family Physicians, suggest that parents follow the recommended childhood immunization schedule that is published every year. The CPEA Network, funded by the NICHD and the NIDCD with additional funding from the CDC, is working to study autism and its relation to the
Guidelines 15
MMR vaccine. CPEA researchers will compare vaccination records of groups of people with autism, to those who do not have autism, to see if the onset of autism symptoms was associated with getting the MMR vaccine or other vaccines. Lab tests in this study will also look for any signs of persistent infections that could be related to the MMR vaccine. More information about this and other studies related to vaccines and autism is available in the NICHD fact sheet titled Autism Research at the NICHD— Autism and the MMR Vaccine. This and other fact sheets on autism are available on the NICHD Web site at www.nichd.nih.gov/autism, or from the NICHD Clearinghouse at 1-800-370-2943.
Do All People with Autism Have the Same Symptoms? Autism is a complex disorder that affects people differently. Because people with autism have a lot of similarities and differences, doctors now think of autism as a “spectrum” disorder; so rather than being just one condition, autism is a group of conditions with a range of similar features. Doctors use the term “autism spectrum disorder (ASD)” to describe people with mild symptoms, severe symptoms, or symptoms that fall anywhere in between.
What Conditions Are Included in the Autism Spectrum Disorder (ASD) Category? Currently, ASD includes: ·
Autistic disorder (sometimes called “classic” autism)
·
Asperger syndrome
·
Childhood disintegrative disorder (CDD)
·
Rett syndrome
·
Pervasive Developmental Disorder Not Otherwise Specified (PDDNOS) or atypical autism
Depending on his or her specific symptoms, a person with autism can be in any one of these categories. In 1999, NICHD-supported researchers identified the gene responsible for Rett syndrome, one of the conditions included in the ASD category. Rett syndrome occurs only in girls and causes them to develop autism-like
16 Autism
symptoms after seemingly normal development. This discovery could lead to improved detection, prevention, and treatment of Rett syndrome. Advances in detecting, preventing, and treating Rett syndrome may shed light on ways to understand and treat ASDs, including those aspects of ASD that may involve regression. A doctor should definitely and immediately evaluate a child for autism if he or she: ·
Does not babble or coo by 12 months of age
·
Does not gesture (point, wave, grasp, etc.) by 12 months of age
·
Does not say single words by 16 months of age
·
Does not say two-word phrases on his or her own (rather than just repeating what someone says to him or her) by 24 months of age
·
Has any loss of any language or social skill at any age
Are There Other Things That Might Be Signs of Autism? There are a number of things that parents, teachers, and others who care for children can look for to determine if a child needs to be evaluated for autism. The following “red flags” could be signs that a doctor should evaluate a child for autism or a related communication disorder. “Red Flags” ·
The child does not respond to his/her name.
·
The child cannot explain what he/she wants.
·
Language skills or speech are delayed.
·
The child doesn’t follow directions.
·
At times, the child seems to be deaf.
·
The child seems to hear sometimes, but not others.
·
The child doesn’t point or wave bye-bye.
·
The child used to say a few words or babble, but now he/she doesn’t.
·
The child throws intense or violent tantrums.
·
The child has odd movement patterns.
·
The child is hyperactive, uncooperative, or oppositional.
Guidelines 17
·
The child doesn’t know how to play with toys.
·
The child doesn’t smile when smiled at.
·
The child has poor eye contact.
·
The child gets “stuck” on things over and over and can’t move on to other things.
·
The child seems to prefer to play alone.
·
The child gets things for him/herself only.
·
The child is very independent for his/her age.
·
The child does things “early” compared to other children.
·
The child seems to be in his/her “own world.”
·
The child seems to tune people out.
·
The child is not interested in other children.
·
The child walks on his/her toes.
·
The child shows unusual attachments to toys, objects, or schedules (i.e., always holding a string or having to put socks on before pants).
·
Child spends a lot of time lining things up or putting things in a certain order.
When Should a Doctor Evaluate a Child for Autism? Doctors should do a “developmental screening” at every well-baby and well-child visit, through the preschool years. In this screening, the doctor asks questions related to normal development that allow him or her to measure a specific child’s development. These questions are often more specific versions of the “red flags“ listed on the previous page, such as does the child cuddle like other children? Or, does the child direct your attention by holding up objects for you to see? The doctor will also ask if the child has any features that were listed earlier as definite signs for evaluation for autism. If the doctor finds that a child either has definite signs of autism, or has a high number of red flags, he or she will send the child to a specialist in child development or another type of health care professional, so the child can be tested for autism. The specialist will rule out other disorders and use tests specific to autism. Then he or she will decide whether a formal diagnosis of autism, ASD, or another disorder is appropriate.
18 Autism
Is There a Cure for Autism? To date, there is no cure for autism. However, there are a number of treatments that can help people with autism and their families lead more normal lives. Individualized, intense interventions that begin as early as possible give people with autism their best chance for progress. Doctors suggest starting these treatments before a child is two-and-a-half or three to get the best and most lasting results. In some cases, treatment can help people with autism function at normal or near-normal levels.
What Are the Treatments for Autism? Many families of children and adults with autism are finding new hope from a variety of treatments for autism. The list below does not include all of the possible treatments for autism. If you have a question about treatment, you should talk to a health care professional who specializes in caring for people with autism. Some treatments include: ·
Individualized Education Programs (IEPs) are one effective way to prevent problem behaviors typically related to autism. IEPs involve a variety of interventions, including some of those mentioned below, and are designed to help a child or adult with autism to overcome his or her specific problems. Children with autism seem to respond very well to IEPs that are properly designed and systematically put into practice.
·
Comprehensive Treatment Programs encompass a number of different theories about treating autism. These programs range from specific methods of learning, to applied behavior analysis, to reaching certain developmental goals. In general, children need to be in this type of program for 15-40 hours a week, for two years or more, to change their behaviors and prevent problems.
·
Applied Behavior Analysis (ABA) generally focuses on reducing specific problem behaviors and teaching new skills. Recently, ABA programs have broadened their scope to include what to do before or between episodes of problem behaviors, in addition to what to do during or after these episodes. By showing children or adults with autism how to handle things like a change in schedule, furniture that has been moved, and meeting new people, ABA removes these situations as triggers for problem behaviors.
Guidelines 19
·
Positive Behavioral Interventions and Support (PBS) is an approach that tries to increase positive behaviors, decrease problem behavior, and improve the child’s or adult’s lifestyle. The PBS method looks at the interactions between people with autism, their environment, their behavior, and their learning processes to develop the best lifestyle for them.
·
Medications can also be effective in improving the behavior or abilities of a person with autism. In general, these medications are called “psychoactive” because the drugs affect the brain of a person with autism. Medication is often used to deal with a specific behavior, such as reducing self-injurious behavior, which may allow the person with autism to focus on other things, like learning.
Many people with autism have other, treatable conditions in addition to their autism. Sleep disorders, seizures, allergies, and digestive problems are common among those with autism, but these problems can often be treated with medication. Treatment for these conditions may not cure autism, but it can improve the quality-of-life for people who have autism and their families.
What Special Services Are Available? According to Public Law 105-17: Individuals with Disabilities Act-IDEA (1997), the child’s primary care provider is required to refer the family to an early intervention service. In addition, children age three and older are entitled by law to a free and appropriate public education. In some states, the law extends these services to all diagnosed children from birth to age three. These services vary by state, but include special education and related services or treatment programs. If the child is under age three, the family should consult the zero-to-three service system in their community. The local school district can provide services for a family if the child is three or older. In either case, the local school district, the state education agency, and the local or state health departments should provide referrals for the necessary services. The current service systems in many states are struggling to adjust to the increasing number of children diagnosed with autism. In many cases, however, the existing systems can’t provide the level of care that families of people with autism want for their child, teenager, or adult with autism.
20 Autism
There are a number of parents’ organizations, both national and local, that can provide information about education and treatment services and how to get these services for a child. For a listing of these organizations, go to http://www.nlm.nih.gov/medlineplus/autism.html, or check the local phone book. In addition to the guideline provided by the NICHD, the National Institute of Neurological Disorders and Stroke (NINDS) has published a guideline on autism. The mission of the NINDS is to reduce the burden of neurological disease—a burden borne by every age group, by every segment of society, by people all over the world.9 To support this mission, the NINDS conducts, fosters, coordinates, and guides research on the causes, prevention, diagnosis, and treatment of neurological disorders and stroke, and supports basic research in related scientific areas. The following patient guideline was recently published by the NINDS on autism:
What Is Autism?10 Autism is not a disease, but a developmental disorder of brain function. People with classical autism show three types of symptoms: impaired social interaction, problems with verbal and nonverbal communication, and unusual or severely limited activities and interests. Symptoms of autism usually appear during the first three years of childhood and continue throughout life. Although there is no cure, appropriate early educational intervention may improve social development and reduce undesirable behaviors. People with autism have a normal life expectancy. Autism affects an estimated 10 to 20 of every 10,000 people, depending on the diagnostic criteria used. Most estimates that include people with similar disorders are two to three times greater. Autism strikes males about four times as often as females, and has been found throughout the world in people of all racial and social backgrounds. Autism varies a great deal in severity. The most severe cases are marked by extremely repetitive, unusual, self-injurious, and aggressive behavior. This behavior may persist over time and prove very difficult to change, posing a tremendous challenge to those who must live with, treat, and teach these 9 This paragraph has been adapted from the NINDS: http://www.ninds.nih.gov/about_ninds/mission.htm. “Adapted” signifies that a passage has been reproduced exactly or slightly edited for this book. 10 Adapted from The National Institute of Neurological Disorders and Stroke (NINDS): http://www.ninds.nih.gov/health_and_medical/pubs/autism.htm.
Guidelines 21
individuals. The mildest forms of autism resemble a personality disorder associated with a perceived learning disability.
What Are Some Common Signs of Autism? The hallmark feature of autism is impaired social interaction. Children with autism may fail to respond to their names and often avoid looking at other people. They often have difficulty interpreting tone of voice or facial expressions and do not respond to others’ emotions or watch other people’s faces for cues about appropriate behavior. They appear unaware of others’ feelings toward them and of the negative impact of their behavior on other people. Many children with autism engage in repetitive movements such as rocking and hair twirling, or in self-injurious behavior such as biting or headbanging. They also tend to start speaking later than other children and may refer to themselves by name instead of “I” or “me.” Some speak in a singsong voice about a narrow range of favorite topics, with little regard for the interests of the person to whom they are speaking. People with autism often have abnormal responses to sounds, touch, or other sensory stimulation. Many show reduced sensitivity to pain. They also may be extraordinarily sensitive to other sensations. These unusual sensitivities may contribute to behavioral symptoms such as resistance to being cuddled.
How Is Autism Diagnosed? Autism is classified as one of the pervasive developmental disorders. Some doctors also use terms such as “emotionally disturbed” to describe people with autism. Because it varies widely in its severity and symptoms, autism may go unrecognized, especially in mildly affected individuals or in those with multiple handicaps. Researchers and therapists have developed several sets of diagnostic criteria for autism. Some frequently used criteria include:11 ·
Absence or impairment of imaginative and social play
·
Impaired ability to make friends with peers
·
Impaired ability to initiate or sustain a conversation with others
11Adapted
from the Diagnostic and Statistical Manual of Mental Disorders IV and the International Classification of Diseases - 10
22 Autism
·
Stereotyped, repetitive, or unusual use of language
·
Restricted patterns of interests that are abnormal in intensity or focus
·
Apparently inflexible adherence to specific routines or rituals
·
Preoccupation with parts of objects
Children with some symptoms of autism, but not enough to be diagnosed with the classical form of the disorder, are often diagnosed with pervasive developmental disorder - not otherwise specified (PDD - NOS). People with autistic behavior but well-developed language skills are often diagnosed with Asperger syndrome. Children who appear normal in their first several years, then lose skills and begin showing autistic behavior, may be diagnosed with childhood disintegrative disorder (CDD). Girls with Rett syndrome, a sex-linked genetic disorder characterized by inadequate brain growth, seizures, and other neurological problems, also may show autistic behavior. PDD - NOS, Asperger syndrome, CDD, and Rett syndrome are referred to as autism spectrum disorders. Since hearing problems can be confused with autism, children with delayed speech development should always have their hearing checked. Children sometimes have impaired hearing in addition to autism. About half of people with autism score below 50 on IQ tests, 20 percent score between 50 and 70, and 30 percent score higher than 70. However, estimating IQ in young children with autism is often difficult because problems with language and behavior can interfere with testing. A small percentage of people with autism are savants. These people have limited but extraordinary skills in areas like music, mathematics, drawing, or visualization.
What Causes Autism? Autism has no single cause. Researchers have identified a number of genes that play a role in the disorder. In some children, environmental factors also may play a role in development of the disorder. Studies of people with autism have found abnormalities in several regions of the brain, including the cerebellum, amygdala, hippocampus, septum, and mamillary bodies. Neurons in these regions appear smaller than normal and have stunted nerve fibers, which may interfere with nerve signaling. These abnormalities suggest that autism results from disruption of normal brain development early in fetal development. Other studies suggest that people with autism have abnormalities of serotonin or other signaling molecules in the brain. While these findings are intriguing, they are preliminary and require further
Guidelines 23
study. The early belief that parental practices are responsible for autism has now been disproved. In a minority of cases, disorders such as fragile X syndrome, tuberous sclerosis, untreated phenylketonuria (PKU), and congenital rubella cause autistic behavior. Other disorders, including Tourette syndrome, learning disabilities, and attention deficit disorder, often occur with autism but do not cause it. While people with schizophrenia may show some autistic-like behavior, their symptoms usually do not appear until the late teens or early adulthood. Most people with schizophrenia also have hallucinations and delusions, which are not found in autism.
What Role Does Genetics Play? Recent studies strongly suggest that some people have a genetic predisposition to autism. Scientists estimate that, in families with one autistic child, the risk of having a second child with the disorder is approximately five percent, or one in 20, which is greater than the risk for the general population (see “What is autism?”). Researchers are looking for clues about which genes contribute to this increased susceptibility. In some cases, parents and other relatives of an autistic person show mild social, communicative, or repetitive behaviors that allow them to function normally but appear linked to autism. Evidence also suggests that some affective, or emotional, disorders occur more frequently than average in families of people with autism.
Do Symptoms of Autism Change Over Time? Symptoms in many children with autism improve with intervention or as the children mature. Some people with autism eventually lead normal or nearnormal lives. About a third of children with autistic spectrum disorders eventually develop epilepsy. The risk is highest in children with severe cognitive impairment and motor deficits. Adolescence may worsen behavior problems in some children with autism, who may become depressed or increasingly unmanageable. Parents should be ready to adjust treatment for their child’s changing needs.
24 Autism
How Can Autism Be Treated? There is no cure for autism at present. Therapies, or interventions, are designed to remedy specific symptoms in each individual. The best-studied therapies include educational/behavioral and medical interventions. Although these interventions do not cure autism, they often bring about substantial improvement. Educational/behavioral interventions: These strategies emphasize highly structured and often intensive skill-oriented training that is tailored to the individual child. Therapists work with children to help them develop social and language skills. Because children learn most effectively and rapidly when very young, this type of therapy should begin as early as possible. Recent evidence suggests that early intervention has a good chance of favorably influencing brain development. Medication: Doctors may prescribe a variety of drugs to reduce self-injurious behavior or other troublesome symptoms of autism, as well as associated conditions such as epilepsy and attention disorders. Most of these drugs affect levels of serotonin or other signaling chemicals in the brain. Many other interventions are available, but few, if any, scientific studies support their use. These therapies remain controversial and may or may not reduce a specific person’s symptoms. Parents should use caution before subscribing to any particular treatment. Counseling for the families of people with autism also may assist them in coping with the disorder.
What Aspects of Autism Are Being Studied? The NINDS is the Federal Government’s leading supporter of biomedical research on brain and nervous system disorders, including autism. The NINDS conducts research in its laboratories at the National Institutes of Health, in Bethesda, Maryland, and supports research at other institutions through grants. NINDS-supported research includes studies aimed at identifying the underlying brain abnormalities of autism through new methods of brain imaging and other innovative techniques. Researchers also are investigating possible biologic markers present at birth that can identify infants at risk for the development of autism. Some scientists hope to identify genes that increase the risk of autism. Others are studying specific aspects of behavior,
Guidelines 25
information processing, and other characteristics to learn precisely how children with autism differ from other people and how these characteristics change over time. The findings may lead to improved strategies for early diagnosis and intervention. Related studies are examining how the cerebellum develops and processes information, how different brain regions function in relation to each other, and how alterations in this relationship during development may result in the signs and symptoms of autism. Researchers hope this research will provide new clues about how autism develops and how brain abnormalities affect behavior.
Where Can I Get More Information? For more information on autism, you may wish to contact: National Institute of Mental Health 6001 Executive Blvd. Bethesda, Maryland 20892-9663 (301) 443-4513 www.nimh.nih.gov National Institute of Child Health and Human Development Building 31, Room 2A32 Bethesda, Maryland 20892-2425 (301) 496-5133 www.nichd.nih.gov Autism Society of America 7910 Woodmont Avenue Suite #300 Bethesda, Maryland 20814 (301) 657-0881 (800) 3AUTISM (328-8476) www.autism-society.org Autism Research Institute 4182 Adams Avenue San Diego, California 92116 (619) 281-7165 www.autism.com/ari/ Center for Outreach and Services for the Autism Community, Inc. (COSAC) 1450 Parkside Avenue, Suite 22
26 Autism
Ewing, New Jersey 08638 (609) 883-8100 (800) 4-AUTISM (428-8476) National Autism Hotline C/O Autism Services Center 605 Ninth Street Prichard Building Huntington, West Virginia 25710-0507 (304) 525-8014 National Organization for Rare Disorders, Inc. (NORD) P.O. Box 8923 New Fairfield, Connecticut 06812-8923 (203) 746-6518 (800) 999-6673 www.rarediseases.org National Alliance for Autism Research (NAAR) 414 Wall Street Research Park Princeton, NJ 08540 Tel: 609-430-9160 / 888-777-NAAR (-6227) Calif: 310-230-3568 Fax: 609-430-9163
[email protected] http://www.naar.org Autism National Committee (AUTCOM) P.O. Box 6175 North Plymouth MA 02362-6175 www.autcom.org Association for Science in Autism Treatment 175 Great Neck Road Suite 406 Great Neck NY 11021
[email protected] Tel: 516-466-4400 Fax: 516-466-4484
Guidelines 27
Cure Autism Now (CAN) Foundation 5455 Wilshire Blvd. Suite 715 Los Angeles CA 90036-4234
[email protected] www.cureautismnow.org Tel: 323-549-0500 / 888-AUTISM (-288476) Fax: 323-549-0547 MAAP Services (for Autism, Asperger’s Syndrome, and PDD) P.O. Box 524 Crown Point IN 46308
[email protected] www.maapservices.org/index.html Tel: 219-662-1311 Fax: 219-662-0638 Autism Network International (ANI) P.O. Box 35448 Syracuse NY 13235-5448
[email protected] www.students.uiuc.edu/~bordner/ani/ National Institute on Deafness and Other Communication Disorders Information Clearinghouse 1 Communication Avenue Bethesda MD 20892-3456
[email protected] www.nidcd.nih.gov Tel: 800-241-1044 TTD/TTY: 241-1055 National Information Center for Children and Youth with Disabilities P.O. Box 1492 Washington DC 20013-1492
[email protected] Tel: 202-884-8200 / 800-695-0285 Fax: 202-884-8441
28 Autism
For information on other neurological disorders or research programs funded by the National Institute of Neurological Disorders and Stroke, contact the Institute’s Brain Resources and Information Network (BRAIN) at: BRAIN P.O. Box 5801 Bethesda, Maryland 20824 (800) 352-9424
More Guideline Sources The guideline above on autism is only one example of the kind of material that you can find online and free of charge. The remainder of this chapter will direct you to other sources which either publish or can help you find additional guidelines on topics related to autism. Many of the guidelines listed below address topics that may be of particular relevance to your child’s specific situation, while certain guidelines will apply to only some children with autism. Due to space limitations these sources are listed in a concise manner. Do not hesitate to consult the following sources by either using the Internet hyperlink provided, or, in cases where the contact information is provided, contacting the publisher or author directly.
Topic Pages: MEDLINEplus For parents wishing to go beyond guidelines published by specific Institutes of the NIH, the National Library of Medicine has created a vast and parentoriented healthcare information portal called MEDLINEplus. Within this Internet-based system are “health topic pages.” You can think of a health topic page as a guide to patient guides. To access this system, log on to http://www.nlm.nih.gov/medlineplus/healthtopics.html. From there you can either search using the alphabetical index or browse by broad topic areas. Recently, MEDLINEplus listed the following as being relevant to autism: ·
Guides On Autism Autism http://www.nlm.nih.gov/medlineplus/autism.html Autism http://www.nlm.nih.gov/medlineplus/ency/article/001526.htm
Guidelines 29
·
Other Guides Directories http://www.nlm.nih.gov/medlineplus/directories.html Developmental Disabilities http://www.nlm.nih.gov/medlineplus/developmentaldisabilities.ht ml
Within the health topic page dedicated to autism, the following was recently recommended to parents: ·
General/Overviews What is Autism? Source: Autism Society of America http://www.autism-society.org/whatisautism/autism.html
·
Diagnosis/Symptoms Autism Checklist Source: Autism Society of America http://www.autism-society.org/whatisautism/checklist.html
·
Treatment Anti-Psychotic Medication Useful In Treating Serious Behavioral Problems Among Children With Autism Source: National Institute of Mental Health http://www.nih.gov/news/pr/jul2002/nimh-31.htm Autism Treatments: Comparison Chart Source: img src='/medlineplus/images/linkpdf.gif' width='100' height='17' border=0 alt='Links to PDF File'> (Autism Society of America http://www.autismsociety.org/packages/intervention_comparison.pdf Early Intervention: A Guide to Available Services for Ages 0-3 Source: img src='/medlineplus/images/linkpdf.gif' width='100' height='17' border=0 alt='Links to PDF File'> (Autism Society of America http://www.autism-society.org/packages/early_intervention.pdf
30 Autism
·
Specific Conditions/Aspects Asperger Syndrome Source: img src='/medlineplus/images/shortsummary.gif' width='90' height='17' border=0 alt='Short Summary'> (National Institute of Neurological Disorders and Stroke http://www.ninds.nih.gov/health_and_medical/disorders/asperger _doc.htm Vaccines and Autism Theory Source: Centers for Disease Control and Prevention http://www.cdc.gov/nip/vacsafe/concerns/autism/default.htm
·
Children Autism Source: Nemours Foundation http://kidshealth.org/kid/health_problems/brain/autism.html Pervasive Developmental Disorders Source: Nemours Foundation http://kidshealth.org/parent/medical/learning/pervasive_develop_ disorders.html
·
From the National Institutes of Health Anti-Psychotic Medication Useful In Treating Serious Behavioral Problems Among Children With Autism Source: National Institute of Mental Health http://www.nih.gov/news/pr/jul2002/nimh-31.htm Autism Source: National Institute of Neurological Disorders and Stroke http://www.ninds.nih.gov/health_and_medical/pubs/autism.htm Autism and the MMR Vaccine Source: National Institute of Child Health and Human Development http://www.nichd.nih.gov/publications/pubs/autism/mmr/index. htm Autism Facts Source: National Institute of Child Health and Human Development http://www.nichd.nih.gov/publications/pubs/autism/facts/index. htm
Guidelines 31
Communication in Autism Source: National Institute on Deafness and Other Communication Disorders http://www.nidcd.nih.gov/health/pubs_vsl/autism.htm NICHD Autism Site Source: National Institute of Child Health and Human Development http://www.nichd.nih.gov/autism/ ·
Latest News Anti-Psychotic Medication Useful In Treating Serious Behavioral Problems Among Children With Autism Source: 07/31/2002, National Institute of Mental Health http://www.nih.gov/news/pr/jul2002/nimh-31.htm Drug May Help Quiet Behavior Problems in Autism Source: 07/31/2002, Reuters Health http://www.nlm.nih.gov/medlineplus/news/fullstory_8741.html No Gastrointestinal Disorder Link to Autism Source: 08/23/2002, Reuters Health http://www.nlm.nih.gov/medlineplus/news/fullstory_9085.html People with Autism Lack Self-Consciousness Source: 08/13/2002, Reuters Health http://www.nlm.nih.gov/medlineplus/news/fullstory_8911.html
·
Organizations Asperger Syndrome Coalition of the U.S. http://www.asperger.org/index_asc.html Autism Society of America http://www.autism-society.org National Institute of Child Health and Human Development http://www.nichd.nih.gov/
·
Research $6 Million Grant to Expand Search for Autism Genes Source: National Institute of Child Health and Human Development http://www.nih.gov/news/pr/mar2002/nimh-11.htm
32 Autism
Autism and Genes Source: National Institute of Child Health and Human Development http://www.nichd.nih.gov/publications/pubs/autism/factsheets/in dex.htm Autism and Vaccine Research Source: National Institute of Child Health and Human Development http://www.nichd.nih.gov/publications/pubs/autism2.htm Autism Research at the National Institute of Mental Health Source: National Institute of Mental Health http://www.nimh.nih.gov/publicat/autismresfact.cfm Autism Spectrum Disorders Source: National Center on Birth Defects and Developmental Disabilities http://www.cdc.gov/ncbddd/dd/ddautism.htm Autism Tissue Program Source: Autism Society of America Foundation, National Alliance for Autism Research http://www.brainbank.org Blood Markers Associated with Autism and Mental Retardation Source: National Institute of Neurological Disorders and Stroke http://www.nih.gov/news/pr/apr2001/ninds-25.htm Brain Gene Implicated in Autism Source: National Institute of Mental Health http://www.nih.gov/news/pr/may2001/nimh-17.htm CDC's Autism Research Efforts Source: National Immunization Program http://www.cdc.gov/nip/vacsafe/concerns/autism/autism-rescdc.htm New Children's Environmental Health Centers to Study Causes of Autism and Other Disorders Source: National Institute of Environmental Health Sciences http://www.niehs.nih.gov/oc/news/nucehr.htm NICHD Autism Research Source: National Institute of Child Health and Human Development http://www.nichd.nih.gov/autism/research.cfm
Guidelines 33
NICHD/NIDCD Network on the Neurobiology and Genetics of Autism: The Collaborative Programs of Excellence in Autism (CPEAs) Source: National Institute of Child Health and Human Development http://www.nichd.nih.gov/publications/pubs/autism/CPEA/index .htm Researchers Find New Insights Into the Genetic Foundations Of Autism Source: National Institute of Child Health and Human Development http://www.nih.gov/news/pr/aug2001/nichd-22.htm Researchers Identify Gene Common to Many Autism Cases Source: National Institute of Child Health and Human Development http://www.nichd.nih.gov/new/releases/autism.cfm Study Confirms Secretin No More Effective Than Placebo in Treating Autism Symptoms Source: National Institutes of Health http://www.nih.gov/news/pr/nov2001/nichd-27.htm Unraveling Autism Source: National Institute of Mental Health http://www.nimh.nih.gov/publicat/unravel.cfm ·
Statistics Autism Prevalence Source: img src='/medlineplus/images/easyread.gif' width='79' height='17' border=0 alt='Easy-to-Read'> (National Vaccine Program Office http://www.cdc.gov/od/nvpo/fs_tableVII_doc2.htm
·
Teenagers Autism Source: Nemours Foundation http://kidshealth.org/teen/diseases_conditions/learning/autism.ht ml
If you do not find topics of interest when browsing health topic pages, then you can choose to use the advanced search utility of MEDLINEplus at http://www.nlm.nih.gov/medlineplus/advancedsearch.html. This utility is similar to the NIH Search Utility, with the exception that it only includes material linked within the MEDLINEplus system (mostly parent-oriented
34 Autism
information). It also has the disadvantage of generating unstructured results. We recommend, therefore, that you use this method only if you have a very targeted search. The Combined Health Information Database (CHID) CHID Online is a reference tool that maintains a database directory of thousands of journal articles and educational guidelines on autism and related conditions. One of the advantages of CHID over other sources is that it offers summaries that describe the guidelines available, including contact information and pricing. CHID’s general Web site is http://chid.nih.gov/. To search this database, go to http://chid.nih.gov/detail/detail.html. In particular, you can use the advanced search options to look up pamphlets, reports, brochures, and information kits. The following was recently posted in this archive: ·
Autism Source: Bethesda, MD: National Institute of Neurological Disorders and Stroke. 1996. [4 p.]. Contact: Available from National Institute of Neurological Disorders and Stroke. Office of Scientific and Health Reports, P.O. Box 5801, Bethesda, MD 20824. (800) 352-9424 or (301) 496-5751. Price: Single copy free. NIH Publication Number 96-1877. Summary: This brochure provides basic information about autism, defined as a developmental disorder of brain function. People with classical autism show three types of symptoms: impaired social interaction, problems with verbal and nonverbal communication and imagination, and unusual or severely limited activities and interests. The brochure describes the common signs of autism, how autism is diagnosed, the causes of autism, the role of genetics, how the symptoms of autism change over time, treatment options for autism, and current research work into various aspects of autism. Treatment options discussed include educational interventions, behavioral interventions, and medications. The brochure concludes with the addresses and telephone numbers for organizations through which readers can get more information on autism.
·
Autism Society of America: Services and Benefits Source: Bethesda, MD: Autism Society of America. 199x. [4 p.].
Guidelines 35
Contact: Available from Autism Society of America. 7910 Woodmont Avenue, Number 650, Bethesda, MD 20814-3015. (800) 3-AUTISM or (301) 657-0881; Fax (800) FAX-0899 (fax-on-demand) or (301) 657-0869; http://www.autism-society.org/. Price: Single copy free. Summary: Autism is a developmental disability that interferes with the normal development of the brain in areas that control verbal and nonverbal communication, social interaction, and sensory development. This brochure describes the Autism Society of America (ASA), an organization dedicated to increasing public awareness about autism and the day to day issues faced by individuals with autism, their families, and the professionals with whom they interact. Education, advocacy, public awareness efforts and promotion of research form the cornerstones of ASA's activities. The brochure describes the services and benefits of ASA, including information and referral, ASA chapter network activities, the ADVOCATE newsletter, the annual national conference on autism, foreign language materials, the mail order bookstore, government advocacy (lobbying), the Fax-On-Demand service, the World Wide Web site, the ASA Foundation (funding biomedical research), and public relations. The brochure includes a membership form for readers wishing to join or contribute to ASA. ·
What is Autism Source: Bethesda, MD: Autism Society of America. 199x. [6 p.]. Contact: Available from Autism Society of America. 7910 Woodmont Avenue, Number 650, Bethesda, MD 20814-3015. (800) 3-AUTISM or (301) 657-0881; Fax (800) FAX-0899 (fax-on-demand) or (301) 657-0869; http://www.autism-society.org/. Price: Single copy free. Summary: Autism is a developmental disability that interferes with the normal development of the brain in areas that control verbal and nonverbal communication, social interaction, and sensory development. Written in a question and answer format, this brochure about autism describes the symptoms of the disorder, diagnostic considerations, incidence and prevalence information, and treatment methods and approaches. Communication can be affected in individuals with autism in the following ways: language develops slowly or not at all; words are used without attaching the usual meaning to them; gestures are used instead of words; and attention spans are short. Sensory impairment can manifest as unusual reactions to physical sensations such as being overly sensitive to touch or under-responsive to pain; sight, hearing, touch, pain, smell and taste may be affected to a greater or lesser degree. The brochure provides an autism check list of traits; individuals with autism typically exhibit at least half of the twenty traits noted. The brochure
36 Autism
concludes with a description of the Autism Society of America (ASA), an organization dedicated to increasing public awareness about autism and the day to day issues faced by individuals with autism, their families, and the professionals with whom they interact. Education, advocacy, public awareness efforts and the promotion of research form the cornerstones of ASA's activities. 2 references. ·
Center for the Study of Autism Source: Beaverton, OR: Center for the Study of Autism (CSA). [6 p.]. Contact: Available from Center for the Study of Autism (CSA). Suite 230, 9725 SW Beaverton-Hillsdale Highway, Beaverton, OR 97005. (503) 6434121; FAX (503) 692-3104. Price: Free. Summary: This brochure describes the goals and activities of the Center for the Study of Autism (CSA). The CSA conducts research in various areas of autism, sponsors educational conferences for professionals and families, provides psychological and sensory assessments, and offers intervention, consultation and support to families. The history of the organization and the backgrounds of its staff members are also described.
·
Medical Information Sheet Source: Bethesda, MD: Autism Society of America. 1998. [8 p.]. Contact: Available from Autism Society of America. 7910 Woodmont Avenue, Suite 300, Bethesda, MD 20814-3067. (800) 328-8476 or (301) 6570881. Fax (301) 657-0869. Website: www.autism-society.org. Price: $7.00 for members; $10.00 for non-members, plus shipping and handling. Also available for free at www.autism-society.org/packages/packages.html. Summary: As autism is a spectrum disorder, no one method of treatment, including medication, will prove entirely effective for all individuals. This fact sheet, from the Autism Society of America (ASA), helps parents understand their options concerning the use of medication for children with autism. The fact sheet is a packet of basic information, and a few related articles, including one written by a person with autism. The authors stress the importance of working closely with a medical professional experienced in treating autism when incorporating medication into the care of a person with autism. People with autism may have very sensitive nervous systems and recommended dosages may be inaccurate and expected results may not occur for that individual. At this time, there is no medication approved for marketing by the FDA for the treatment of autism. However, medications may be used to treat associated behaviors (for example to reduce anxiety or subdue compulsions) or to treat co-existing conditions such as seizures. Each
Guidelines 37
page of the fact sheet includes the contact information for the Society (www.autism-society.org). ·
Pervasive Developmental Disorders: PDD-NOS, Asperger's Disorder, and Autism Parent Information Booklet Source: Boston, MA: Institute for Community Inclusion-UAP. 1996. [12 p.]. Contact: Available from Institute for Community Inclusion-UAP. 300 Longwood Avenue, Boston, MA 02115. Voice (617) 355-6506. TTY (617) 355-6956. E-mail:
[email protected]. Website: web1.tch.harvard.edu/ici. Price: $3.00 plus shipping and handling. Also available for free at http://web1.tch.harvard.edu/ici/publications/pddbook.html. Summary: This informational packet offers information for parents on pervasive developmental disorders (PDDs), including pervasive development disorders not otherwise specified (PPD-NOS), such as Asperger's disorder and autism. Topics include definitions, a summary of the most common categories of PDDs, the general characteristics of children with PDD, the causes of PDD, diagnostic tests and decisions, how to know if a diagnosis is accurate, the coexistence of PDD or autism and mental retardation, genetics of PDDs and risk factors for other children in the same family, speech development in children with PDD, recovery for children with PDD, the difficult behaviors of PDD and their causes, intervention and education strategies for children with PDD, drug therapy (medications) that may help children with PDD, other treatment options (auditory training, vitamin therapy, facilitated communication), how to meet other parents of children with PDD, and how to get additional information about PDDs, their diagnosis, and treatment. The contact information is provided for the Autism Society of America (ASA, 800-328-8476) and for the Autism Support Center (800-7AUTISM).
·
ETC.: Effective Therapies Through Cued Speech. Articulation, Learning Disabilities, Phonics, Down Syndrome, Deaf-Blind, etc Source: Cleveland, OH: National Cued Speech Association. 1996. (Information Package). Contact: Available from Cued Speech Discovery. Bookstore of the National Cued Speech Association, 23970 Hermitage Road, Cleveland, OH 44122-4008. Voice/TTY (800) 459-3529 or (216) 292-6213; E-mail:
[email protected]. Price: $10.00 plus $3.00 shipping and handling. Summary: This information package contains a variety of information about cued speech and its use with children who have hearing
38 Autism
impairments and a disability such as Down syndrome, learning disability, visual impairment, etc. The package is designed for the families of these children, and for professionals who work with them. It combines fact sheets, articles, and commentaries on cued speech. Topics include autism, pervasive developmental disorders, and cued speech; cued speech for children who are deaf-blind; cued speech and phonics; students who have reading difficulties and cued speech; the selfmonitoring cue card (SMCC) format; cued speech for articulation therapy; cued speech for persons who have mental retardation; and the views of speech-language pathologists on cued speech. The information packet also lists recommended readings and resources for additional materials.
The National Guideline Clearinghouse™ The National Guideline Clearinghouse™ offers hundreds of evidence-based clinical practice guidelines published in the United States and other countries. You can search their site located at http://www.guideline.gov by using the keyword “autism” or synonyms. The following was recently posted: ·
Practice parameter: Screening and diagnosis of autism. Report of the Quality Standards Subcommittee of the American Academy of Neurology and the Child Neurology Society. Source: American Academy of Neurology/Child Neurology Society.; 2000 August; 12 pages http://www.guideline.gov/FRAMESETS/guideline_fs.asp?guideline=00 2048&sSearch_string=Autism
·
Practice parameters for the assessment and treatment of children, adolescents, and adults with autism and other pervasive developmental disorders. Source: American Academy of Child and Adolescent Psychiatry.; 1999 June 27; 69 pages http://www.guideline.gov/FRAMESETS/guideline_fs.asp?guideline=00 1367&sSearch_string=Autism
Guidelines 39
Healthfinder™ Healthfinder™ is an additional source sponsored by the U.S. Department of Health and Human Services which offers links to hundreds of other sites that contain healthcare information. This Web site is located at http://www.healthfinder.gov. Again, keyword searches can be used to find guidelines. The following was recently found in this database: ·
Autism Summary: This booklet defines autism, explains how this devastating childhood disorder is diagnosed, and summarizes current thinking about possible causes. Source: National Institute of Mental Health, National Institutes of Health http://www.healthfinder.gov/scripts/recordpass.asp?RecordType=0&R ecordID=4311
·
Autism in Children and Adolescents Summary: This is one of a series of fact sheets on the mental, emotional, and behavior disorders that can appear in childhood or adolescence. Source: National Mental Health Services Knowledge Exchange Network, Center for Mental Health Services http://www.healthfinder.gov/scripts/recordpass.asp?RecordType=0&R ecordID=5167
·
Autism Information Fact Sheet Summary: This fact sheet defines autism and pervasive developmental disorder NOS (not otherwise specified) as developmental disabilities that share many of the same characteristics. Source: National Information Center for Children and Youth with Disabilities, U.S. Department of Education http://www.healthfinder.gov/scripts/recordpass.asp?RecordType=0&R ecordID=3404
40 Autism
·
Autism Information Page Summary: A general overview of autism that includes a description and information about treatment, prognosis and research. Source: National Institute of Neurological Disorders and Stroke, National Institutes of Health http://www.healthfinder.gov/scripts/recordpass.asp?RecordType=0&R ecordID=773
·
Autism Spectrum Disorders Among Children Summary: This fact sheet describes autism spectrum disorders (ASD) and details CDC's research program activities related to children with ASD. Source: Office on Disability and Health, National Center on Birth Defects and Developmental Disabilities http://www.healthfinder.gov/scripts/recordpass.asp?RecordType=0&R ecordID=5420
·
Communication in Autism Summary: This fact sheet describes who is affected by autism, what causes the speech and language problems of autism, and how the speech and language problems are being treated. Source: National Institute on Deafness and Other Communication Disorders Information Clearinghouse http://www.healthfinder.gov/scripts/recordpass.asp?RecordType=0&R ecordID=6646
·
The Use of Secretin To Treat Autism Summary: This health advisory is in response to the many inquiries received at the National Institutes of Health (NIH) as a result of media attention on the use of secretin as a treatment for autism. Source: National Institute of Child Health and Human Development, National Institutes of Health http://www.healthfinder.gov/scripts/recordpass.asp?RecordType=0&R ecordID=4334
Guidelines 41
·
Unraveling Autism Summary: Autism, a brain disorder that affects 1 to 2 in 1,000 Americans, too often results in a lifetime of impaired thinking, feeling and social functioning—our most uniquely human attributes. Source: National Institute of Mental Health, National Institutes of Health http://www.healthfinder.gov/scripts/recordpass.asp?RecordType=0&R ecordID=6659
The NIH Search Utility After browsing the references listed at the beginning of this chapter, you may want to explore the NIH Search Utility. This allows you to search for documents on over 100 selected Web sites that comprise the NIH-WEBSPACE. Each of these servers is “crawled” and indexed on an ongoing basis. Your search will produce a list of various documents, all of which will relate in some way to autism. The drawbacks of this approach are that the information is not organized by theme and that the references are often a mix of information for professionals and parents. Nevertheless, a large number of the listed Web sites provide useful background information. We can only recommend this route, therefore, for relatively rare or specific disorders, or when using highly targeted searches. To use the NIH search utility, visit the following Web page: http://search.nih.gov/index.html.
NORD (The National Organization of Rare Disorders, Inc.) NORD provides an invaluable service to the public by publishing, for a nominal fee, short yet comprehensive guidelines on over 1,000 medical conditions. NORD primarily focuses on rare medical conditions that might not be covered by the previously listed sources. NORD’s Web address is www.rarediseases.org. To see if a recent fact sheet has been published on autism, simply go to the following hyperlink: http://www.rarediseases.org/cgi-bin/nord/alphalist. A complete guide on autism can be purchased from NORD for a nominal fee.
42 Autism
Additional Web Sources A number of Web sites that often link to government sites are available to the public. These can also point you in the direction of essential information. The following is a representative sample: ·
AOL: http://search.aol.com/cat.adp?id=168&layer=&from=subcats
·
drkoop.comÒ: http://www.drkoop.com/conditions/ency/index.html
·
Family Village: http://www.familyvillage.wisc.edu/specific.htm
·
Google: http://directory.google.com/Top/Health/Conditions_and_Diseases/
·
Med Help International: http://www.medhelp.org/HealthTopics/A.html
·
Open Directory Project: http://dmoz.org/Health/Conditions_and_Diseases/
·
Yahoo.com: http://dir.yahoo.com/Health/Diseases_and_Conditions/
·
WebMDÒHealth: http://my.webmd.com/health_topics
Vocabulary Builder The material in this chapter may have contained a number of unfamiliar words. The following Vocabulary Builder introduces you to terms used in this chapter that have not been covered in the previous chapter: Adolescence: The period of life beginning with the appearance of secondary sex characteristics and terminating with the cessation of somatic growth. The years usually referred to as adolescence lie between 13 and 18 years of age. [NIH]
Amygdala: Almond-shaped group of basal nuclei anterior to the inferior horn of the lateral ventricle of the brain, within the temporal lobe. The amygdala is part of the limbic system. [NIH] Anxiety: The unpleasant emotional state consisting of psychophysiological responses to anticipation of unreal or imagined danger, ostensibly resulting from unrecognized intrapsychic conflict. Physiological concomitants include increased heart rate, altered respiration rate, sweating, trembling, weakness, and fatigue; psychological concomitants include feelings of impending danger, powerlessness, apprehension, and tension. [EU] Atypical: Irregular; not conformable to the type; in microbiology, applied specifically to strains of unusual type. [EU] Auditory: Pertaining to the sense of hearing. [EU]
Guidelines 43
Cerebellum: Part of the metencephalon that lies in the posterior cranial fossa behind the brain stem. It is concerned with the coordination of movement. [NIH] Cues: Signals for an action; that specific portion of a perceptual field or pattern of stimuli to which a subject has learned to respond. [NIH] Delusions: A false belief regarding the self or persons or objects outside the self that persists despite the facts, and is not considered tenable by one's associates. [NIH] Gastrointestinal: Pertaining to or communicating with the stomach and intestine, as a gastrointestinal fistula. [EU] Gestures: Movement of a part of the body for the purpose of communication. [NIH] Imagination: A new pattern of perceptual or ideational material derived from past experience. [NIH] Immunization: The induction of immunity. [EU] Manifest: Being the part or aspect of a phenomenon that is directly observable : concretely expressed in behaviour. [EU] Neurology: A medical specialty concerned with the study of the structures, functions, and diseases of the nervous system. [NIH] Neurons: The basic cellular units of nervous tissue. Each neuron consists of a body, an axon, and dendrites. Their purpose is to receive, conduct, and transmit impulses in the nervous system. [NIH] Pediatrics: A medical specialty concerned with maintaining health and providing medical care to children from birth to adolescence. [NIH] Predisposition: A latent susceptibility to disease which may be activated under certain conditions, as by stress. [EU] Psychiatry: The medical science that deals with the origin, diagnosis, prevention, and treatment of mental disorders. [NIH] Rubella: An acute, usually benign, infectious disease caused by a togavirus and most often affecting children and nonimmune young adults, in which the virus enters the respiratory tract via droplet nuclei and spreads to the lymphatic system. It is characterized by a slight cold, sore throat, and fever, followed by enlargement of the postauricular, suboccipital, and cervical lymph nodes, and the appearances of a fine pink rash that begins on the head and spreads to become generalized. Called also German measles, roetln, röteln, and three-day measles, and rubeola in French and Spanish. [EU] Schizophrenia: A severe emotional disorder of psychotic depth characteristically marked by a retreat from reality with delusion formation, hallucinations, emotional disharmony, and regressive behavior. [NIH]
44 Autism
Sclerosis: A induration, or hardening; especially hardening of a part from inflammation and in diseases of the interstitial substance. The term is used chiefly for such a hardening of the nervous system due to hyperplasia of the connective tissue or to designate hardening of the blood vessels. [EU] Seizures: Clinical or subclinical disturbances of cortical function due to a sudden, abnormal, excessive, and disorganized discharge of brain cells. Clinical manifestations include abnormal motor, sensory and psychic phenomena. Recurrent seizures are usually referred to as EPILEPSY or "seizure disorder." [NIH] Septum: A dividing wall or partition; a general term for such a structure. The term is often used alone to refer to the septal area or to the septum pellucidum. [EU] Socialization: The training or molding of an individual through various relationships, educational agencies, and social controls, which enables him to become a member of a particular society. [NIH] Spectrum: A charted band of wavelengths of electromagnetic vibrations obtained by refraction and diffraction. By extension, a measurable range of activity, such as the range of bacteria affected by an antibiotic (antibacterial s.) or the complete range of manifestations of a disease. [EU] Tone: 1. the normal degree of vigour and tension; in muscle, the resistance to passive elongation or stretch; tonus. 2. a particular quality of sound or of voice. 3. to make permanent, or to change, the colour of silver stain by chemical treatment, usually with a heavy metal. [EU] Vaccination: The introduction of vaccine into the body for the purpose of inducing immunity. Coined originally to apply to the injection of smallpox vaccine, the term has come to mean any immunizing procedure in which vaccine is injected. [EU] Vaccine: A suspension of attenuated or killed microorganisms (bacteria, viruses, or rickettsiae), administered for the prevention, amelioration or treatment of infectious diseases. [EU]
Seeking Guidance 45
CHAPTER 2. SEEKING GUIDANCE Overview Some parents are comforted by the knowledge that a number of organizations dedicate their resources to helping people with autism. These associations can become invaluable sources of information and advice. Many associations offer parent support, financial assistance, and other important services. Furthermore, healthcare research has shown that support groups often help people to better cope with their conditions.12 In addition to support groups, your child’s physician can be a valuable source of guidance and support. In this chapter, we direct you to resources that can help you find parent organizations and medical specialists. We begin by describing how to find associations and parent groups that can help you better understand and cope with your child’s condition. The chapter ends with a discussion on how to find a doctor that is right for your child.
Associations and Autism In addition to associations or groups that your child’s doctor might recommend, we suggest that you consider the following list (if there is a fee for an association, you may want to check with your child’s insurance provider to find out if the cost will be covered):
Churches, synagogues, and other houses of worship might also have groups that can offer you the social support you need.
12
46 Autism
·
Autism Sensory Network Address: Autism Sensory Network. 7510 Ocean Front Avenue, Virginia Beach, VA 23451. (804) 428-9036; FAX (804) 428- 0019. Telephone: (905) 886- 8364 Toll-free: (800) 950-6264 Background: This fact sheet describes the activities and goals of the Autism and Sensory Impairments Network for Individuals with Hearing or Visual Impairment and Autism. The network was begun in 1992 by the parents of an 18 year-old son with autism who is profoundly deaf. The purpose of the network is to provide parents and professionals the opportunity to share experiences and knowledge about autism and deafness. The network focuses on communication, education, research and patient advocacy. A membership form is included. Relevant area(s) of interest: Autism
·
Autism Network for Hearing and Visually Impaired Persons Address: Autism Network for Hearing and Visually Impaired Persons 7510 Ocean Front Avenue, Virginia Beach, VA 23451 Telephone: (757) 428-9036 Toll-free: (888) 663-4637 Fax: (757) 428-0019 Background: The Autism Network for Hearing and Visually Impaired Persons is a voluntary organization that was founded to serve the needs of people with Autism who also have a hearing or visual impairment. Established in 1992, the Network was adopted as a formal committee of the Autism Society of America. The goals of the organization include the creation and maintenance of a database of people with Autism combined with a sensory disability in order to establish a network for communication, education, research, and advocacy. The Network also seeks to develop centers to diagnose and evaluate individuals with these disorders. In addition, the organization works to educate physicians within the community and present educational sessions at the Autism Society of America National Annual Conference.
·
Autism Network International Address: Autism Network International P.O. Box 448, Syracuse, NY 13210-0448 Telephone: (315) 476-2462 Toll-free: (888) 777-6227 Fax: (315) 425-1978 Email:
[email protected]
Seeking Guidance 47
Background: The Autism Network International (ANI) is a self-help and advocacy organization dedicated to supporting individuals with autism and helping them to compensate, navigate, and function in the world. Autism is a nonprogressive neurological disorder characterized by language and communication deficits, withdrawal from social contacts, and extreme reactions to changes in the immediate environment. Established in 1992 and consisting of approximately 340 members, ANI is an organization run by individuals with autism who believe that the best advocates for autistic people are autistic people themselves. The Network provides a forum for people with autism to share information, peer support, and tips for coping and problem solving. In addition to promoting self-advocacy for high-functioning autistic adults, ANI also works to improve the lives of people with autism who, whether because they are young or because they do not have adequate communication skills, are unable to advocate for themselves. The Autism Network International assists people with autism who are unable to participate directly by providing information and referrals to parents and teachers. ANI's educational materials include a regular newsletter entitled 'Our Voice' as well as brochures and audiovisual aids. Relevant area(s) of interest: Autism, Kanner Syndrome ·
Autism Research Institute Address: Autism Research Institute 4182 Adams Avenue, San Diego, CA 92116 Telephone: (619) 281-7165 Toll-free: (800) 272-4622 Fax: (619) 563-6840 Web Site: http://www.autism.com/ari Background: The Autism Research Institute (ARI) is an international voluntary organization dedicated to assisting parents and professionals concerned with autism. Autism is a nonprogressive neurologic disorder characterized by language and communication deficits, withdrawal from social contacts, and extreme reactions to changes in the immediate environment. ARI was founded in 1967 to conduct and foster scientific research designed to improve the methods of diagnosing, treating, and preventing autism. ARI also disseminates research findings to parents and other interested individuals. The Institute's databank contains approximately 29,000 detailed case histories of children with autism. The records were compiled from over 60 countries. In addition, the organization publishes a quarterly newsletter entitled 'Autism Research Review International.'. Relevant area(s) of interest: Autism, Pervasive Developmental Disorder
48 Autism
·
Autism Services Center Address: Autism Services Center P.O. Box 507, Huntington, WV 257100507 Telephone: (304) 525-8014 Toll-free: (800) 245-6081 Fax: (304) 525-8026 Background: The Autism Services Center (ASC) is a nonprofit organization dedicated to providing developmental disabilities services with a specialty in autism. Autism is a nonprogressive neurological disorder characterized by language and communication deficits, withdrawal from social contacts, and extreme reactions to changes in the immediate environment. Established in 1979, ASC serves individuals with developmental disabilities in Cabell, Lincoln, Mason, and Wayne counties in West Virginia. ASC was founded on the belief that each person with autism and other developmental disorders has the capacity for growth and development and has a right to services that enhance well being, quality of life, and opportunities to learn according to one's capacity. The organization further advocates that each individual should have access to the least restrictive social and physical environments consistent with his or her needs and stresses that clients with even the most challenging behaviors can respond to gentle, humane treatment in a structured, meaningful program with appropriately trained and supervised staff and the appropriate client/staff ratio. The Autism Services Center offers many programs and services including residential services; foster care; case management; the Personal Care Nursing program in which qualified nurses make home visits; the Supported Employment program that offers job training and placement; a National Autism Hotline; family support services that allocate a combination of state and federal funds; independent living services that teach clients learning skills necessary to function independently in the community; and respite care. ASC offers a variety of materials including a newsletter, brochures, audiovisual aids, and an information packet. Relevant area(s) of interest: Autism, Infantile Autism, Kanner Syndrome, Pervasive Developmental Disorder
·
Autism Society of America Telephone: (301) 657- 0881. Toll-free: (800) 328-8476 Fax: (301) 657-0869. Background: The Autism Society of America is a national not-for-profit advocacy organization that was established in 1965. The mission of the Society is to promote life-long access and opportunity for all individuals
Seeking Guidance 49
within the autism spectrum and their families. This mission is achieved through programs of education and advocacy. The Society supports ongoing medical research into the causes, prevention, and treatment of Autism; promotes public awareness; provides information, support, and advocacy to help affected individuals become fully participating members of their communities; and gives referrals to appropriate sources of support and treatment. The Society's educational materials include newsletters, brochures, and Spanish language materials. Relevant area(s) of interest: Autism ·
C.A.N.D.L.E Address: C.A.N.D.L.E. 4414 McCampbell Drive, Montgomery, AL 36106 Telephone: (334) 281-7179 Toll-free: (800) 950-6264 Fax: (334) 271-3947 Background: C.A.N.D.L.E. is an international not-for-profit voluntary support organization composed of parents, families, professionals, and friends of children with neurological disorders. C.A.N.D.L.E. provides educational and medical information and recommendations about all aspects of Childhood Aphasia, Autism, Pervasive Development Disorder, Landau-Kleffner Syndrome, and Epilepsy. The organization's primary focus is to act as a clearinghouse for information on childhood neurological disorders. To this end, the organization accumulates and disseminates information about these neurological disorders. It stimulates increased access to resources, answers questions from parents and professionals concerning identification, evaluation, treatment, and rehabilitation, and encourages scientific research into the causes, control, and cure of such disorders. In addition, C.A.N.D.L.E. seeks to aid parents in understanding treatment options and offer support by listening, sharing experiences, and networking families with similar disorders. Educational materials produced by the organization include brochures, journals, and a regular newsletter. Relevant area(s) of interest: Autism, Pervasive Developmental Disorder
·
California Developmental Disabilities NETLINK Address: California Developmental Disabilities NETLINK Web Site on the Internet, Telephone: (416) 661-9611 Toll-free: (800) 856-2207 Email:
[email protected] Web Site: http://www.npi.ucla.edu/uap/cddn/
50 Autism
Background: California Developmental Disabilities NETLINK, a project of the University Affiliated Programs (UAP) at the University of California, Los Angeles (UCLA), offers a web site on the Internet that provides information about services and programs for children and adults with developmental disabilities in California. The California Developmental Disabilities NETLINK is funded by the State Council on Developmental Disabilities Program Development Fund Cycle XIX and the UCLA UAP. The mission of the UCLA UPA is to ensure that individuals with developmental disabilities and their families have access to services, support systems, and opportunities that promote independence, productivity, and inclusion in the community. The UCLA UAP is an interdisciplinary training, technical assistance, and information dissemination program. The California Developmental Disabilities NETLINK web site enables online visitors to search for information about services and programs in the following areas: assistive technology, housing and residential services, family support, employment and vocational training, special education, recreation, transportation, and public assistance. Currently, the site contains information from a survey on over 800 organizations and programs identified across California. The site's 'links page' provides dynamic linkage to web sites and online services provided by organizations and agencies in California as well as national resources. The site's listing of state resources includes the State Council on Developmental Disabilities, Protection and Advocacy, Area Boards, Regional Centers, and University Affiliated Programs in California. Relevant area(s) of interest: Autism, Cerebral Palsy ·
Canadian Hyperlexia Association Address: Canadian Hyperlexia Association 300 John Street, Box 87673, Thornhill, Ontario, L3T 7R3, Canada Telephone: (905) 886- 8364 Toll-free: (800) 950-6264 Fax: (905) 886-4624 Email:
[email protected] Web Site: http://home.ican.net/~cha Background: The Canadian Hyperlexia Association (CHA) is a not-forprofit organization dedicated to fostering awareness of hyperlexia in Canada; providing information relating to the observable characteristics of this condition; collecting, disseminating, and sharing information, practical strategies, and resources; providing networking opportunities for parents, children, and professionals; and acknowledging the value of appropriate, early, ongoing intervention. Hyperlexia is a condition that
Seeking Guidance 51
interferes with speech, language, and social interaction. From as early as 18 months to before the age of five, affected children experience an intense fascination with letters, numbers, patterns, logos, etc. and have a precocious ability to read, spell, write, and/or compute. Established in 1995 and consisting of 100 members and three chapters, CHA offers telephone support to parents, teachers, speech-language pathologists, physicians, and psychologists. The Association's educational materials include a newsletter entitled 'The Reader,' brochures, and audiovisual aids. CHA maintains a web site at http://home.ican.net/~cha. Relevant area(s) of interest: Autism ·
Child Study Center Address: Child Study Center Yale University Medical School, 230 South Frontage Road, P.O. Box 207900, New Haven, CT 06520-7900 Telephone: (203) 785-2513 Toll-free: (800) 328-8476 Fax: (203) 785-7402 Web Site: http://info.med.yale.edu/chldstdy/welcome.htm Background: The Child Study Center is a clinical facility located at Yale University Medical School in New Haven, Connecticut. The Center, which is part of the Department of Child and Adolescent Psychiatry, is dedicated to the identification and treatment of a variety of childhood disorders including Heller Syndrome, Tourette Syndrome, Trichotillomania, Attention Deficit Hyperactivity Disorder, Obsessive Compulsive Disorder, Asperger's Syndrome, Autism, Pervasive Development Disorder, and other psychiatric disorders. The Center's goals include providing preventive services and working closely with other community programs to reduce the need for specialized services; providing early intervention; delivering appropriate care to children and their families in an effective fashion; and coordinating child psychiatric services with other medical and social services to assure continuity of care. The center holds support group meetings, offers phone support, and distributes reprints of medical articles related to childhood psychiatric disorders. Relevant area(s) of interest: Attention Deficit Hyperactivity Disorder, Autism, Pervasive Developmental Disorder
·
Cincinnati Center for Developmental Disorders Address: Cincinnati Center for Developmental Disorders Pavilion Building, 3333 Burnet Avenue, Cincinnai, OH 45229-3039 Telephone: (513) 636-4688 Toll-free: (800) 328-8476
52 Autism
Fax: (513) 636-7361 Web Site: http://www.chmcc.org Background: Established in 1957, the Cincinnati Center for Developmental Disorders is dedicated to facilitating the empowerment and maximizing the skills of individuals with developmental disabilities and other chronic handicapping conditions to help them recognize their own value, become self-advocates, attain full inclusion, and achieve equal partnership as participating and contributing members of the community. The Center, which serves approximately 9,000 individuals each year, is committed to providing comprehensive, interdisciplinary services for each child and adult. Pediatricians trained in developmental disorders, speech and hearing specialists, psychologists, special educators, occupational therapists, and other professionals work together with an affected individual's family to create customized plans to meet an affected individual's special needs. The Center provides a range of services including a complete evaluation that lays the groundwork for a unique plan of care as well as specialized services that provide families with complete programs of evaluation, treatment, and support for specific problems such as autism, behavioral problems, cerebral palsy, craniofacial abnormalities such as cleft lip and palate, Down Syndrome, myelomeningocele, neurofibromatosis, Rubinstein-Taybi Syndrome, and Williams Syndrome. The Center also provides classroom therapy to help parents and community classroom teachers learn how to manage a child's behavior and communication problems as well as family support services that offer a wide range of resources ranging from special toy libraries and parent discussion groups to information and referral services. Adult services are also provided to help ease the transition to adult life in such areas as health care, housing, work, and other issues. The Center also serves the larger community through its outreach program, which provides training and technical assistance to teachers, social workers, and health care professionals so that individuals with disabilities may receive support within their communities and be included as fully participating members. In addition, the Center's ongoing research into the cause and treatment of various disabilities such as autism, Down Syndrome, and spina bifida enables the Center to look for new, effective methods in treating and caring for individuals with developmental disorders. The Center also offers a variety of materials including brochures, pamphlets, reports, and a regular newsletter. Relevant area(s) of interest: Autism, Cerebral Palsy
Seeking Guidance 53
·
Dana Alliance for Brain Initiatives Address: Dana Alliance for Brain Initiatives 745 Fifth Avenue, Suite 700, New York, NY 10151 Telephone: (212) 223-4040 Toll-free: (888) 777-6227 Fax: (212) 593-7623 Email:
[email protected] Web Site: http://www.dana.org Background: The Dana Alliance for Brain Initiatives, a nonprofit organization supported by the Charles A. Dana Foundation, was established as an alliance of neuroscientists dedicated to providing information and promoting understanding concerning the personal and public benefits of brain research. (The Charles A. Dana Foundation is a private philanthropic foundation with grant programs in health and education.) Established in 1993, the Dana Alliance for Brain Initiatives currently consists of more than 175 neuroscientists. Alliance members have set 10 main objectives in brain research that are considered obtainable by the Year 2000. These objectives include the identification of the genes that are defective in familial Alzheimer's and Huntington's diseases; identification of genes responsible for hereditary forms of manic- depressive illness; and development of new drugs and other measures to alleviate the effects of multiple sclerosis, Alzheimer's disease, Parkinson's disease, motor neuron disease such as Amyotrophic Lateral Sclerosis (ALS or Lou Gehrig's disease), and epilepsy. Many of the 10 objectives have been met, and significant progress is being made on all 10 objectives. According to the Alliance, approximately one in five Americans is affected by a brain disease or disorder, ranging from learning disabilities to Parkinson's Disease from epilepsy to spinal cord injuries. The Dana Alliance for Brain Initiatives is dedicated to answering questions concerning brain-related research and providing information concerning new developments. The Alliance offers a variety of periodicals, newsletters, reports, reference works, and books. The Dana Alliance and the Dana Foundation also have a web site on the Internet that provides information on current activities and services, describes the Dana Alliance's objectives, offers information concerning available publications, and provides comprehensive dynamic linkage through the Dana BrainWeb. The Dana BrainWeb recommends several Internet sites as helpful resources for individuals concerned about brain diseases and disorders. The Dana Foundation and Alliance web site is located at http://www.dana.org. Relevant area(s) of interest: Autism, Cerebral Palsy
54 Autism
·
Harvard Brain Tissue Resource Center Address: Harvard Brain Tissue Resource Center McLean Hospital, 115 Mill Street, Belmont, MA 02178 Telephone: (617) 855-2400 Toll-free: (800) 272-4622 Fax: (617) 855-3199 Email:
[email protected] Web Site: http://www.brainbank.mclean.org:8080 Background: The Harvard Brain Tissue Resource Center is a federally funded, not-for-profit organization, dedicated to serving as a national resource for the collection and distribution of postmortem brain tissues for medical research into the causes of neurological and psychiatric disorders. The Brain Bank is interested in the study of Huntington's, Alzheimer's, and Parkinson's diseases, progressive supranuclear palsy (PSP), amyotrophic lateral sclerosis (ALS), Tourette and Rett syndromes, and autism, as well as schizophrenia and manic depressive illnesses. The Center distributes brain tissue samples, at no charge, to qualified investigators in the United States who are involved in studying the neurobiology of these disorders. Relevant area(s) of interest: Autism
·
MAAP Services, Inc Address: MAAP Services, Inc. P.O. Box 524, Crown Point, IN 46307 Telephone: (219) 662-1311 Toll-free: (800) 245-6081 Fax: (219) 662-0638 Email:
[email protected] Web Site: http://maap.html Background: MAAP Services, Inc. is a nonprofit organization dedicated to assisting family members of more advanced individuals with autism by offering information and advice on autism, and by providing the opportunity to network with others in similar circumstances. In addition, MAAP Services works to inform professionals and the general public about more advanced individuals with autism and how to meet their needs. Autism is a syndrome; individuals with this syndrome experience difficulty in verbal and/or nonverbal communications, which ranges in extremes from not speaking at all to being unable to interpret body language or participate comfortably in two-way conversation. Established in 1984, MAAP Services, Inc. supports professionals and families of individuals with autism by responding to phone calls and letters from family members, professionals, and individuals with autism
Seeking Guidance 55
who need support and advice. The organization produces educational materials including 'The MAAP,' a quarterly newsletter that allows subscribers to exchange information, learn about issues related to autism, and share with others who face similar challenges; disseminates specific print materials relevant to high-functioning individuals with autism; and distributes a pamphlet entitled 'MAAP Services, Inc.' The organization conducts conferences, workshops, and meetings of parent groups; supports education; and provides appropriate referrals. MAAP can be reached at its e-mail address at chartatnetnitco.net. Relevant area(s) of interest: Autism ·
March of Dimes Birth Defects Foundation Address: March of Dimes Birth Defects Foundation 1275 Mamaroneck Avenue, White Plains, NY 10605 Telephone: (914) 428-7100 Toll-free: (888) 663-4637 Fax: (914) 997-4763 Email:
[email protected] Web Site: http://www.modimes.org Background: The March of Dimes Birth Defects Foundation is a national not-for- profit organization that was established in 1938. The mission of the Foundation is to improve the health of babies by preventing birth defects and infant mortality. Through the Campaign for Healthier Babies, the March of Dimes funds programs of research, community services, education, and advocacy. Educational programs that seek to prevent birth defects are important to the Foundation and to that end it produces a wide variety of printed informational materials and videos. The March of Dimes public health educational materials provide information encouraging health- enhancing behaviors that lead to a healthy pregnancy and a healthy baby. Relevant area(s) of interest: Autism, Cerebral Palsy, Dyslexia
·
National Alliance for Autism Research Address: National Alliance for Autism Research Research Park, 414 Wall Street, Princeton, NJ 08648 Telephone: (609) 430-9160 Toll-free: (888) 777-6227 Fax: (609) 430-9163 Email:
[email protected] Web Site: http://www.naar.org
56 Autism
Background: The National Alliance for Autism Research (NAAR) is a voluntary organization dedicated to promoting and supporting biomedical research into the prevention, treatment, and potential cure of autism spectrum disorders. Autism is characterized by extreme withdrawal and an inability to speak or communicate, to relate to others, or to learn or understand human interaction. Autism is considered a pervasive developmental disorder since it affects fine motor, gross motor, language, communicative, emotional, cognitive, and behavioral skills. The National Alliance for Autism Research was founded in 1994 by parents who were concerned about the limited amount of biomedical research conducted into the causes, prevention, treatment, and cure of autism spectrum disorders. The organization, which now has approximately 7,000 members, promotes research in autism by providing funding for promising and innovative pilot studies, significant projects of established investigators in autism and related fields whose techniques and discoveries may be relevant to autism, and fellowships and postdoctoral research. All research proposals seeking funding from the NAAR are reviewed by the organization's Scientific Advisory Board, which is composed of preeminent scientists in a broad array of disciplines relevant to autism research. The NAAR also conducts conferences for parents and working groups of autism researchers to help coordinate research strategies and encourage collaborative efforts. In addition, the NAAR provides assistance to brain bank sites to help strengthen research capabilities and encourages the pharmaceutical industry to develop treatment agents beneficial to individuals with autism. The NAAR also has a web site on the Internet and provides a variety of educational materials including brochures, reports, and a regular newsletter entitled 'Narrative.'. Relevant area(s) of interest: Autism, Pervasive Developmental Disorder ·
National Alliance for the Mentally Ill Address: National Alliance for the Mentally Ill 200 North Glebe Road, Suite 1015, Arlington, VA 22203-3754 Telephone: (703) 524-7600 Toll-free: (800) 950-6264 Fax: (703) 524-9094 Email:
[email protected] Web Site: http://www.nami.org Background: The National Alliance for the Mentally Ill (NAMI) is a notfor-profit voluntary health organization dedicated to providing mutual support, education, advocacy, and research funding for people affected by mental illness, their families, and friends. The organization also serves
Seeking Guidance 57
those who have been diagnosed with schizophrenic depression and other related disorders. Established in 1979, this self-help organization refers individuals to nationwide support groups, services, and outreach programs. Educational materials produced by the organization include a database, directories, annual reports, informational brochures, pamphlets, a bimonthly newsletter entitled 'The Advocate,' and 'The Decade of the Brain,' NAMI's quarterly publication for presenting research, clinical practices and advances, and policy updates relevant to serious brain disorders. Relevant area(s) of interest: Attention Deficit Hyperactivity Disorder, Autism ·
National Autistic Society Address: National Autistic Society 393 City Road, London, EC1V 1NG, United Kingdom Telephone: 0171 833 2299 Toll-free: (800) 328-8476 Fax: 0171 833 9666 EWeb Site: http://www.oneworld.org/autism_uk/ Background: The National Autistic Society (NAS) is an international nonprofit support organization dedicated to providing support and information to individuals affected by autism and their families and to act as an advocate for these individuals to ensure that they are provided equal opportunities in all aspects of life. Founded in 1962 and comprised of 3,500 members, NAS offers a national diagnostic and assessment service; supports ongoing clinical research; maintains a directory of affected individuals; owns and manages full-time schools and adult residential facilities; coordinates conferences for parents, caregivers, and practitioners; runs an information service for people with autism and related disorders; and provides appropriate referrals. NAS also publishes a newsletter entitled 'Connection,' reports, a journal, and brochures. The Society is a member of many other societies and organizations, including the National Council for Voluntary Organizations and Autism Europe. Memberships are available. Relevant area(s) of interest: Autism, Kanner Syndrome
·
National Mental Health Association Address: National Mental Health Association 1021 Prince Street, Alexandria, VA 22314-2971 Telephone: (703) 684-7722 Toll-free: (800) 969-6642
58 Autism
Fax: (703) 684-5968 Email:
[email protected] Web Site: http://www.nmha.org Background: Established in 1909, the National Mental Health Association (NMHA) is a not-for-profit voluntary organization that addresses the mental health needs of individuals throughout the United States. The Association, which has over 300 affiliates in 35 states, has a network of volunteers across the country that work to meet the mental health needs of their communities. Activities include support groups, community outreach and education, information and referral programs, patient advocacy, and a wide array of other services. Nationally, the Association works with the media to keep the public informed about mental health and mental illness and with the Federal government to promote research and services for people with mental health problems. The Association also works with other major organizations to ensure that the nation's mental health needs are understood and addressed. Services include fact sheet and pamphlet distribution; buddy and companion programs; client services and case management; education and training programs; referral services; and social and recreational programs, workshops, and seminars. Educational materials distributed by the Association include quarterly newsletters entitled 'Prevention Update' and 'The Bell.'. Relevant area(s) of interest: Attention Deficit Hyperactivity Disorder, Autism ·
National Mental Health Consumer Self-Help Clearinghouse Address: National Mental Health Consumer Self-Help Clearinghouse 1211 Chestnut Street, Suite 1207, Philadelphia, PA 19107-6312 Telephone: (215) 751-1810 Toll-free: (800) 553-4539 Fax: (215) 636-6310 Email:
[email protected] Web Site: http://www.mhselfhelp.org Background: The National Mental Health Consumer Self-Help Clearinghouse is a self- help, service, and advocacy organization that was established in 1985. The Clearinghouse handles thousands of inquiries annually from people who are concerned with mental health issues. Health care consumers, affected individuals, family members, professionals, and other interested people request information and technical assistance on locating local groups and becoming involved in the self-help movement. The Clearinghouse also provides on-site consultations to individuals and groups interested in mental health self-
Seeking Guidance 59
help group development. In addition, the Clearinghouse sponsors conferences and training events and has developed a wide variety of printed pamphlets and manuals on mental illness. A national quarterly newsletter entitled 'The Key' provides assistance to affected individuals, their families, and physicians. Relevant area(s) of interest: Attention Deficit Hyperactivity Disorder, Autism ·
Nebraska Family Support Network Address: Nebraska Family Support Network 215 Centennial Mall South, Suite 220, Lincoln, NE 68508-1813 Telephone: (402) 477-2992 Toll-free: (800) 245-6081 Fax: (402) 477-3192 Email: None. Web Site: None Background: The Nebraska Family Support Network (NFSN), a voluntary not-for- profit advocacy organization, was established in 1988 by a group of parents who identified the need to develop support and referral services closer to home for families of children with mental illness, serious emotional disturbances, and behavioral disorders. The Network, which now consists of approximately 2,500 members, is dedicated to providing support to families of children with or at risk for a mental, emotional, or behavioral disorder; promoting an integrated 'system of care' for affected children and their families; and promoting awareness of the needs of affected children among the general public and health care professionals. The Nebraska Family Support Network works collaboratively with other family support organizations across the state for the purposes of information sharing, resource exchange, advocacy, service development, and policy/legislation review. The Network also offers a 24-hour toll- free telephone support line for statewide access for parents and professionals; serves as a referral mechanism for families to link with appropriate support groups in or near their communities; and offers networking services to affected families, enabling them to exchange mutual support, information, and resources. In addition, the Network provides advocacy services upon requests from families, physicians, or special educators; develops programs to educate families and professionals about the needs of children and adolescents with emotional, behavioral, or mental disorders; and conducts regular workshops to help parents become more effective participants in their children's treatment when working with Medicaid or Medicaid Managed Care providers. The Nebraska Family Support Network also has a
60 Autism
lending library with print and video resource materials and publishes a quarterly newsletter for families and professionals that regularly includes commentary, support group locations, behavioral and mental health information updates, and legislative/regulatory updates concerning changes that may affect affected families' access to required services. Relevant area(s) of interest: Attention Deficit Hyperactivity Disorder, Autism ·
New Directions for People with Disabilities, Inc Address: New Directions for People with Disabilities, Inc. 5276 Hollister Avenue, Suite 207, Santa Barbara, CA 93111 Telephone: (805) 967-2841 Toll-free: (800) 245-6081 Fax: (805) 964-7344 Email:
[email protected] Background: New Directions for People with Disabilities, Inc., a not-forprofit organization established in 1985, is dedicated to providing local, national, and international travel and foreign exchange programs for people with disabilities. The purpose of the programs is to promote the understanding, acceptance, and appreciation of people with disabilities as important and contributing members of our society as well as to promote a sense of accomplishment, belonging, and self-worth for participants by providing a wide range of challenging activities. Such activities include skiing, river rafting, biking tours, and hot air ballooning. The Tour Guides/Chaperones are special educational instructors, recreation therapists, residential counselors, nurses, nurses' aides, vocational and independent living skill counselors, and other professional staff who have been trained to work with people with disabilities. Each year, New Directions serves over 350 children, adults, and seniors who have developmental, emotional, and physical disabilities such as cerebral palsy, Down Syndrome, autism, schizophrenia, blindness, hearing impairment, and mental retardation. Participants live in state hospitals, board and care homes, residential treatment centers, and nursing homes. Most have not previously had a vacation, and many have not been away from their facilities or treatment centers for 10 or more years. New Directions annually sponsors trips in the United States and abroad to locations including Hawaii, Washington D.C., New York City, Las Vegas, Disneyland, the Grand Canyon, Australia, Ireland, Japan, and Mexico. Relevant area(s) of interest: Autism, Cerebral Palsy
Seeking Guidance 61
·
Online Asperger Syndrome Information and Support Address: Online Asperger Syndrome Information and Support Telephone: (416) 661-9611 Toll-free: (800) 856-2207 Email:
[email protected] Web Site: http://www.udel.edu/bkirby/asperger/ Background: Online Asperger Syndrome Information and Support is a web site on the Internet dedicated to providing information, support, and resources to individuals affected by Asperger syndrome and their family members. Asperger syndrome is considered by some researchers a high functioning form of autism. The disorder may be characterized by poor motor skills, varied sensory- or information-processing difficulties, difficulty with social interactions, social withdrawal, and strong interest and functioning in certain educational areas. By definition, individuals with Asperger syndrome have a normal I.Q.; in addition, many may have an exceptional skill or talent in a specific area. Created by the parent of a child diagnosed with Asperger syndrome, the Online Asperger Syndrome Information and Support web site offers a variety of online networking opportunities including a message board where visitors may read and post messages; a guest book that enables visitors to view and respond to past postings as well as introduce themselves; and listings of additional newsgroups, mailing lists, forums, and live chats on the Internet. The Online Asperger Syndrome Information and Support web site also provides indepth information on Asperger syndrome; links to research papers written on the disorder; information concerning medical centers, universities, and clinics; a regular column written by the mother of a child with Asperger syndrome; and links to several newsletters. In addition, the web site also provides listings on upcoming conferences concerning Asperger syndrome and related disorders; offers information on local and national support groups for affected families; and has several special areas including a 'Kid's Corner,' an 'Art Gallery,' a 'Writer's Corner,' and a 'Family Matters' area where affected individuals, family members, and friends may share their experiences through poetry, artwork, short stories, or other contributions. The Online Asperger Syndrome Information and Support web site is located at http://www.udel.edu/bkirby/asperger/. Relevant area(s) of interest: Autism
·
Parent Pals (A Gifted and Special Education Web Site on theInternet for Parents) Address: Parent Pals (A Gifted and Special Education Web Site on the Internet for Parents)
62 Autism
Telephone: (416) 661-9611 Toll-free: (800) 856-2207 Email:
[email protected] Web Site: http://www.parentpals.com Background: Parent Pals, a Gifted and Special Education Web site on the Internet, provides a variety of information and services for parents of children who are gifted or who have certain disabilities including Attention Deficit Disorder, autism, hearing impairment, emotional disturbances, learning disabilities, mental retardation, mobility impairment, speech and language impairment, stuttering, visual impairment, traumatic brain injury, and/or other health impairments. Parent Pals provides newsletters from therapists, teachers, and psychiatrists; general information on such topics as special education services, early intervention services, and individualized education programs (IEPs); a dictionary of terms used in special education; and an index of definitions concerning certain disorders. The site also provides specific educational and therapy games to enhance children's learning and language skills. These teaching ideas are organized by four levels, ranging from level 1 with preschool tasks to level 4 for gifted students. Parent Pals also provides weekly tips for parents of gifted children or children with certain disabilities. In addition, the site offers dynamic links to additional web sites in several different categories including 'education links,' 'therapy links,' 'special education legislation links,' and 'medical links.' Parent Pals is located at http://www.parentpals.com. Relevant area(s) of interest: Attention Deficit Hyperactivity Disorder, Autism ·
Purine Metabolic Patients' Association Address: Purine Metabolic Patients' Association 71 Newcomen Street, London, SE1 1YT, United Kingdom Telephone: 0171 378 6079 Toll-free: (888) 777-6227 Email:
[email protected] Web Site: http://ourworld.compuserve.com/homepages/derekyardley Background: The Purine Metabolic Patients' Association (PUMPA) is an international not-for-profit support organization in the United Kingdom for individuals with purine metabolic disorders and their families. Founded in 1992 by a small group of affected families and friends, the Association is dedicated to advancing knowledge of purine metabolic disorders among the medical profession and the general public in its aim to improve the care and increase the support received by affected individuals. Inborn errors in the metabolism of purines, which are
Seeking Guidance 63
compounds found in many foods, medications, and other substances, result in several different disorders. There are currently over 20 known inherited disorders of purine metabolism, causing a wide range of associated symptoms and findings. Depending upon the specific disorder, affected individuals may experience such symptoms as gout, anemia, autism, episodes of uncontrolled electrical disturbances in the brain (seizures), delayed development, deafness, kidney stones and/or renal failure, impaired immunity, self-destructive behaviors such as biting or head-banging, and/or other abnormalities. The Purine Metabolic Patients' Association is committed to providing networking services to affected individuals and families, enabling them to exchange mutual support, information, and resources. The Association also promotes and supports research currently being conducted by the Purine Research Laboratory at Guy's Hospital, London. In addition, the Purine Metabolic Patients' Association offers a variety of educational materials including pamphlets, booklets providing understandable information on specific purine metabolic disorders, and a regular newsletter. The Association also has a web site on the Internet that provides a description of the organization's goals and services, information on purine metabolic disorders, networking opportunities including a guestbook and a forum area, and dynamic linkage to additional sources of information and support on the Internet. ·
Purine Research Society Address: Purine Research Society 5424 Beech Avenue, Bethesda, MD 20814-1730 Telephone: (301) 530-0354 Toll-free: (888) 663-4637 Fax: (301) 564-9597 EWeb Site: http://www2.dgsys.com/~purine/ Background: The Purine Research Society, previously known as Purine 24, is a national nonprofit charitable organization dedicated to funding research and treatments for purine-related metabolic diseases. Errors in the metabolism of purines (compounds commonly found in food) can lead to a variety of disorders. Established in 1986 by parents of children with purine autism (autistic children who excrete too much uric acid in their urine), the Society serves people with purine metabolic disorders and their families, health care professionals, and the general public. The Society has contributed a significant amount of money to fund M.D./Ph.D. researchers to find out why their children with autism were excreting excess uric acid, the end product of purines, and is now very close to beginning a treatment protocol. The Purine Research Society
64 Autism
provides appropriate referrals to affected individuals and offers educational pamphlets and brochures, as well as a purine restricted diet. ·
Roeher Institute Address: Roeher Institute Kinsmen Building, York University, 4700 Keele Street, North York, Ontario, M3J 1P3, Canada Telephone: (416) 661-9611 Toll-free: (800) 856-2207 Fax: (416) 661-5701 Email:
[email protected] Web Site: http://www.roeher.ca Background: The Roeher Institute, located in Ontario, Canada, is a nonprofit organization dedicated to the study of public policy affecting people with intellectual impairments and other disabilities. Established in 1957, the Institute has an extensive national and international network and acts as a clearinghouse for information about disability issues around the world. The Institute's services include reference and referral information; customized responses to information requests; a generation of bibliographies on specific topics; and the development of customized information packages. The Roeher Institute's goals are to examine and understand issues that affect individuals with an intellectual impairment and other disabilities; to act as a center for the exchange of ideas and to encourage new ways of thinking about persons with an intellectual impairment and other disabilities; and to provide insight into the social policy, programs, laws, and other features of Canadian society that affect the capacity of people with an intellectual impairment and other disabilities to exercise their rights and fully participate in society. Educational materials include a pamphlet entitled 'An International Information Centre of Disability at The Roeher Institute,' a catalog that lists resource books, and a booklet entitled 'Issues and Resources.' The Institute supports research, encourages educational activities, and provides appropriate referrals. The Roeher Institute can be reached at its web site on the Internet at http://www.roeher.ca. Relevant area(s) of interest: Autism, Cerebral Palsy
·
Scottish Society for Autism Address: Telephone: 01259 720044 Toll-free: (800) 272-4622 Fax: 01259 720051 Email: ssac@autism-in- scotland.org.uk
Seeking Guidance 65
Web Site: http://www.autism-in-scotland.org.uk Background: The Scottish Society for Autism is a not-for-profit voluntary organization dedicated to providing the best possible care, support, and education for people of all ages with autism throughout Scotland. The Society also works to raise the awareness of autism among the general public and professionals working in this field. Autism is a genetic disorder characterized by difficulties in relating to, or understanding, other people and social situations; difficulties in acquiring any form of communication; and a lack of imaginative ability, often substituted by obsessive, repetitive behavior and a strong resistance to change. Established in 1976, the Society has programs that provide residential and day services for people with autism from all over Scotland. Staff aim to identify the strengths and needs of the service-users and devise strategies that maximize their potential. This is carried out in a caring environment in which affected individuals receive the necessary support and guidance to maintain a satisfying and enjoyable lifestyle. Consisting of 500 members and 15 chapters, the organizations produce educational materials including a booklet entitled 'The Scottish Society for Autism Information Pack' and a magazine entitled 'In Touch.'. Relevant area(s) of interest: Autism, Pervasive Developmental Disorder ·
University Students with Autism and Asperger's Syndrome Web Site Address: University Students with Autism and Asperger's Syndrome Web Site Telephone: (416) 661-9611 Toll-free: (800) 856-2207 Email:
[email protected] Web Site: http://www.users.dircon.co.uk/~cns/index.html Background: The University Students with Autism and Asperger's Syndrome Web Site is dedicated to providing information, assistance, support, and resources to students with autism spectrum disorders such as Asperger's syndrome who are interested in or are already obtaining higher education. Asperger's syndrome, a neuropsychiatric disorder that usually is not recognized until early childhood, or, in some cases, later in life, is considered by some researchers a high functioning form of autism. The disorder may be characterized by poor motor skills, sensory- or information-processing difficulties in some areas, difficulty with social interactions, social withdrawal, and strong interest and functioning in certain educational areas. The University Students with Autism and Asperger's Syndrome Web Site provides a private online mailing list (ListServ) for students in higher education with high-functioning autism or Asperger's syndrome (HFA/AS), ex-students with HFA/AS who are
66 Autism
willing to share advice and experiences, people with HFA/AS who are thinking about applying to university, university staff with HFA/AS, and parents and professionals who are connected with students with HFA/AS. The site also provides listings of helpful books and articles for students with HFA/AS; resources concerning entering the workforce after college; first- person accounts written by affected individuals; material concerning related conditions; and information concerning obtaining a diagnosis, adapting effective study skills, adapting successfully to a university environment, and taking steps to educate others about autism spectrum disorders. The web site also provides dynamic links to additional sources of helpful information for students with HFA/AS.
Finding More Associations There are a number of directories that list additional medical associations that you may find useful. While not all of these directories will provide different information than what is listed above, by consulting all of them, you will have nearly exhausted all sources for parent associations.
The National Health Information Center (NHIC) The National Health Information Center (NHIC) offers a free referral service to help people find organizations that provide information about autism. For more information, see the NHIC’s Web site at http://www.health.gov/NHIC/ or contact an information specialist by calling 1-800-336-4797.
DIRLINE A comprehensive source of information on associations is the DIRLINE database maintained by the National Library of Medicine. The database comprises some 10,000 records of organizations, research centers, and government institutes and associations which primarily focus on health and biomedicine. DIRLINE is available via the Internet at the following Web site: http://dirline.nlm.nih.gov. Simply type in “autism” (or a synonym) or the name of a topic, and the site will list information contained in the database on all relevant organizations.
Seeking Guidance 67
The Combined Health Information Database Another comprehensive source of information on healthcare associations is the Combined Health Information Database. Using the “Detailed Search” option, you will need to limit your search to “Organizations” and “autism”. Type the following hyperlink into your Web browser: http://chid.nih.gov/detail/detail.html. To find associations, use the drop boxes at the bottom of the search page where “You may refine your search by.” For publication date, select “All Years.” Then, select your preferred language and the format option “Organization Resource Sheet.” By making these selections and typing in “autism” (or synonyms) into the “For these words:” box, you will only receive results on organizations dealing with autism. You should check back periodically with this database since it is updated every 3 months. The National Organization for Rare Disorders, Inc. The National Organization for Rare Disorders, Inc. has prepared a Web site that provides, at no charge, lists of associations organized by specific medical conditions. You can access this database at the following Web site: http://www.rarediseases.org/cgi-bin/nord/searchpage. Select the option called “Organizational Database (ODB)” and type “autism” (or a synonym) in the search box.
Online Support Groups In addition to support groups, commercial Internet service providers offer forums and chat rooms to discuss different illnesses and conditions. WebMDÒ, for example, offers such a service at their Web site: http://boards.webmd.com/roundtable. These online communities can help you connect with a network of people whose concerns are similar to yours. Online support groups are places where people can talk informally. If you read about a novel approach, consult with your child’s doctor or other healthcare providers, as the treatments or discoveries you hear about may not be scientifically proven to be safe and effective.
Finding Doctors All parents must go through the process of selecting a physician for their children with autism. While this process will vary, the Agency for
68 Autism
Healthcare Research and Quality makes a number of suggestions, including the following:13 ·
If your child is in a managed care plan, check the plan’s list of doctors first.
·
Ask doctors or other health professionals who work with doctors, such as hospital nurses, for referrals.
·
Call a hospital’s doctor referral service, but keep in mind that these services usually refer you to doctors on staff at that particular hospital. The services do not have information on the quality of care that these doctors provide.
·
Some local medical societies offer lists of member doctors. Again, these lists do not have information on the quality of care that these doctors provide.
Additional steps you can take to locate doctors include the following: ·
Check with the associations listed earlier in this chapter.
·
Information on doctors in some states is available on the Internet at http://www.docboard.org. This Web site is run by “Administrators in Medicine,” a group of state medical board directors.
·
The American Board of Medical Specialties can tell you if your child’s doctor is board certified. “Certified” means that the doctor has completed a training program in a specialty and has passed an exam, or “board,” to assess his or her knowledge, skills, and experience to provide quality patient care in that specialty. Primary care doctors may also be certified as specialists. The AMBS Web site is located at http://www.abms.org/newsearch.asp.14 You can also contact the ABMS by phone at 1-866-ASK-ABMS.
·
You can call the American Medical Association (AMA) at 800-665-2882 for information on training, specialties, and board certification for many licensed doctors in the United States. This information also can be found in “Physician Select” at the AMA’s Web site: http://www.amaassn.org/aps/amahg.htm.
If the previous sources did not meet your needs, you may want to log on to the Web site of the National Organization for Rare Disorders (NORD) at http://www.rarediseases.org/. NORD maintains a database of doctors with expertise in various rare medical conditions. The Metabolic Information This section is adapted from the AHRQ: www.ahrq.gov/consumer/qntascii/qntdr.htm. While board certification is a good measure of a doctor’s knowledge, it is possible to receive quality care from doctors who are not board certified. 13 14
Seeking Guidance 69
Network (MIN), 800-945-2188, also maintains a database of physicians with expertise in various metabolic diseases.
Finding a Neurologist The American Academy of Neurology allows you to search for member neurologists by name or location. To use this service, go to http://www.aan.com/, select “Find a Neurologist” from the toolbar. Enter your search criteria, and click “Search.” To find out more information on a particular neurologist, click on the physician’s name. If the previous sources did not meet your needs, you may want to log on to the Web site of the National Organization for Rare Disorders (NORD) at http://www.rarediseases.org/. NORD maintains a database of doctors with expertise in various rare diseases. The Metabolic Information Network (MIN), 800-945-2188, also maintains a database of physicians with expertise in various metabolic diseases.
Selecting Your Doctor15 When you have compiled a list of prospective doctors, call each of their offices. First, ask if the doctor accepts your child’s health insurance plan and if he or she is taking new patients. If the doctor is not covered by your child’s plan, ask yourself if you are prepared to pay the extra costs. The next step is to schedule a visit with your first choice. During the first visit you will have the opportunity to evaluate your child’s doctor and to find out if your child feels comfortable with him or her.
Working with Your Child’s Doctor16 Research has shown that parents who have good relationships with their children’s doctors tend to be more satisfied with their children’s care. Here are some tips to help you and your child’s doctor become partners:
15 This
section has been adapted from the AHRQ: www.ahrq.gov/consumer/qntascii/qntdr.htm. 16 This section has been adapted from the AHRQ: www.ahrq.gov/consumer/qntascii/qntdr.htm.
70 Autism
·
You know important things about your child’s symptoms and health history. Tell the doctor what you think he or she needs to know.
·
Always bring any medications your child is currently taking with you to the appointment, or you can bring a list of your child’s medications including dosage and frequency information. Talk about any allergies or reactions your child has had to medications.
·
Tell your doctor about any natural or alternative medicines your child is taking.
·
Bring other medical information, such as x-ray films, test results, and medical records.
·
Ask questions. If you don’t, the doctor will assume that you understood everything that was said.
·
Write down your questions before the doctor’s visit. List the most important ones first to make sure that they are addressed.
·
Ask the doctor to draw pictures if you think that this will help you and your child understand.
·
Take notes. Some doctors do not mind if you bring a tape recorder to help you remember things, but always ask first.
·
Take information home. Ask for written instructions. Your child’s doctor may also have brochures and audio and videotapes on autism.
By following these steps, you will enhance the relationship you and your child have with the physician.
Broader Health-Related Resources In addition to the references above, the NIH has set up guidance Web sites that can help parents find healthcare professionals. These include:17 ·
Caregivers: http://www.nlm.nih.gov/medlineplus/caregivers.html
·
Choosing a Doctor or Healthcare Service: http://www.nlm.nih.gov/medlineplus/choosingadoctororhealthcareserv ice.html
·
Hospitals and Health Facilities: http://www.nlm.nih.gov/medlineplus/healthfacilities.html
You can access this information at: http://www.nlm.nih.gov/medlineplus/healthsystem.html.
17
Seeking Guidance 71
Vocabulary Builder The following vocabulary builder provides definitions of words used in this chapter that have not been defined in previous chapters: Anemia: A reduction in the number of circulating erythrocytes or in the quantity of hemoglobin. [NIH] Aphasia: Defect or loss of the power of expression by speech, writing, or signs, or of comprehending spoken or written language, due to injury or disease of the brain centres. [EU] Cerebral: Of or pertaining of the cerebrum or the brain. [EU] Chronic: Persisting over a long period of time. [EU] Gout: Hereditary metabolic disorder characterized by recurrent acute arthritis, hyperuricemia and deposition of sodium urate in and around the joints, sometimes with formation of uric acid calculi. [NIH] Immunity: The condition of being immune; the protection against infectious disease conferred either by the immune response generated by immunization or previous infection or by other nonimmunologic factors (innate i.). [EU] Infantile: Pertaining to an infant or to infancy. [EU] Lip: Either of the two fleshy, full-blooded margins of the mouth. [NIH] Manic: Affected with mania. [EU] Mobility: Capability of movement, of being moved, or of flowing freely. [EU] Psychiatric: Pertaining to or within the purview of psychiatry. [EU] Purines: A series of heterocyclic compounds that are variously substituted in nature and are known also as purine bases. They include adenine and guanine, constituents of nucleic acids, as well as many alkaloids such as caffeine and theophylline. Uric acid is the metabolic end product of purine metabolism. [NIH] Trichotillomania: Compulsion to pull out one's hair. [NIH] Withdrawal: 1. a pathological retreat from interpersonal contact and social involvement, as may occur in schizophrenia, depression, or schizoid avoidant and schizotypal personality disorders. 2. (DSM III-R) a substancespecific organic brain syndrome that follows the cessation of use or reduction in intake of a psychoactive substance that had been regularly used to induce a state of intoxication. [EU]
Clinical Trials 73
CHAPTER 3. CLINICAL TRIALS AND AUTISM Overview Very few medical conditions have a single treatment. The basic treatment guidelines that your child’s physician has discussed with you, or those that you have found using the techniques discussed in Chapter 1, may provide you with all that you will require. For some patients, current treatments can be enhanced with new or innovative techniques currently under investigation. In this chapter, we will describe how clinical trials work and show you how to keep informed of trials concerning autism.
What Is a Clinical Trial?18 Clinical trials involve the participation of people in medical research. Most medical research begins with studies in test tubes and on animals. Treatments that show promise in these early studies may then be tried with people. The only sure way to find out whether a new treatment is safe, effective, and better than other treatments for autism is to try it on patients in a clinical trial.
The discussion in this chapter has been adapted from the NIH and the NEI: www.nei.nih.gov/netrials/ctivr.htm.
18
74 Autism
What Kinds of Clinical Trials Are There? Clinical trials are carried out in three phases: ·
Phase I. Researchers first conduct Phase I trials with small numbers of patients and healthy volunteers. If the new treatment is a medication, researchers also try to determine how much of it can be given safely.
·
Phase II. Researchers conduct Phase II trials in small numbers of patients to find out the effect of a new treatment on autism.
·
Phase III. Finally, researchers conduct Phase III trials to find out how new treatments for autism compare with standard treatments already being used. Phase III trials also help to determine if new treatments have any side effects. These trials--which may involve hundreds, perhaps thousands, of people--can also compare new treatments with no treatment. How Is a Clinical Trial Conducted?
Various organizations support clinical trials at medical centers, hospitals, universities, and doctors’ offices across the United States. The “principal investigator” is the researcher in charge of the study at each facility participating in the clinical trial. Most clinical trial researchers are medical doctors, academic researchers, and specialists. The “clinic coordinator” knows all about how the study works and makes all the arrangements for your child’s visits. All doctors and researchers who take part in the study on autism carefully follow a detailed treatment plan called a protocol. This plan fully explains how the doctors will treat your child in the study. The “protocol” ensures that all patients are treated in the same way, no matter where they receive care. Clinical trials are controlled. This means that researchers compare the effects of the new treatment with those of the standard treatment. In some cases, when no standard treatment exists, the new treatment is compared with no treatment. Patients who receive the new treatment are in the treatment group. Patients who receive a standard treatment or no treatment are in the “control” group. In some clinical trials, patients in the treatment group get a new medication while those in the control group get a placebo. A placebo is a harmless substance, a “dummy” pill, that has no effect on autism. In other clinical trials, where a new surgery or device (not a medicine) is being tested, patients in the control group may receive a “sham treatment.” This
Clinical Trials 75
treatment, like a placebo, has no effect on autism and will not harm your child. Researchers assign patients “randomly” to the treatment or control group. This is like flipping a coin to decide which patients are in each group. If you choose to have your child participate in a clinical trial, you will not know which group he or she will be appointed to. The chance of any patient getting the new treatment is about 50 percent. You cannot request that your child receive the new treatment instead of the placebo or “sham” treatment. Often, you will not know until the study is over whether your child has been in the treatment group or the control group. This is called a “masked” study. In some trials, neither doctors nor patients know who is getting which treatment. This is called a “double masked” study. These types of trials help to ensure that the perceptions of the participants or doctors will not affect the study results. Natural History Studies Unlike clinical trials in which patient volunteers may receive new treatments, natural history studies provide important information to researchers on how autism develops over time. A natural history study follows patient volunteers to see how factors such as age, sex, race, or family history might make some people more or less at risk for autism. A natural history study may also tell researchers if diet, lifestyle, or occupation affects how a medical condition develops and progresses. Results from these studies provide information that helps answer questions such as: How fast will a medical condition usually progress? How bad will the condition become? Will treatment be needed? What Is Expected of Your Child in a Clinical Trial? Not everyone can take part in a clinical trial for a specific medical condition. Each study enrolls patients with certain features or eligibility criteria. These criteria may include the type and stage of the condition, as well as, the age and previous treatment history of the patient. You or your child’s doctor can contact the sponsoring organization to find out more about specific clinical trials and their eligibility criteria. If you would like your child to participate in a clinical trial, your child’s doctor must contact one of the trial’s investigators and provide details about his or her diagnosis and medical history.
76 Autism
When participating in a clinical trial, your child may be required to have a number of medical tests. Your child may also need to take medications and/or undergo surgery. Depending upon the treatment and the examination procedure, your child may be required to receive inpatient hospital care. He or she may have to return to the medical facility for followup examinations. These exams help find out how well the treatment is working. Follow-up studies can take months or years. However, the success of the clinical trial often depends on learning what happens to patients over a long period of time. Only patients who continue to return for follow-up examinations can provide this important long-term information.
Recent Trials on Autism The National Institutes of Health and other organizations sponsor trials on various medical conditions. Because funding for research goes to the medical areas that show promising research opportunities, it is not possible for the NIH or others to sponsor clinical trials for every medical condition at all times. The following lists recent trials dedicated to autism.19 If the trial listed by the NIH is still recruiting, your child may be eligible. If it is no longer recruiting or has been completed, then you can contact the sponsors to learn more about the study and, if published, the results. Further information on the trial is available at the Web site indicated. Please note that some trials may no longer be recruiting patients or are otherwise closed. Before contacting sponsors of a clinical trial, consult with your child’s physician who can help you determine if your child might benefit from participation. ·
Behavioral and MRI Studies of Motor Control in Children with ADHD and in Healthy Volunteers Condition(s): Attention Deficit Hyperactivity Disorder Study Status: This study is currently recruiting patients. Sponsor(s): National Institute of Mental Health (NIMH) Purpose - Excerpt: This study will examine how the brain controls whether or not a person performs a motor act, such as pushing a button. This question is important in a number of illnesses, such as attention deficit hyperactivity disorder (ADHD), in which people have trouble controlling motor activity. The following groups of subjects may be eligible for this study: - Children between 7 and 10 years of age with ADHD (for behavioral study). - Healthy normal volunteers between 7 and 10 years of age (for behavioral study). - Healthy adult normal volunteers between the 18 and 45 years of age (for behavioral study and
19
These are listed at www.ClinicalTrials.gov.
Clinical Trials 77
for magnetic resonance imaging). Participants will be screened for eligibility as follows: - Children (and their parents) in the behavioral study will have a medical history and psychiatric evaluation. Parents will complete an autism screening questionnaire. Children will have a brief intelligence test. Children with ADHD will have tests to confirm the diagnosis, and their teachers will fill out our forms. - Adults in the behavioral study will have a medical history and psychiatric interview. Adults in the magnetic resonance imaging (MRI) study will have a medical history, psychiatric, and physical examinations, and blood and urine tests. All participants will be asked to refrain from taking any overthe-counter medications for 5 days before the behavioral study and the MRI scan. Children with ADHD will stop taking medicine for ADHD 72 hours before the behavioral study. The procedures are as follows: Behavioral study - Subjects will look at a computer screen where the letters "X" and "O" appear and follow the staff member's instructions as to how to respond when the letter appears. They may be asked to push a button, withhold a response, or push another button if a noise occurs or the screen color changes. - MRI study - For the MRI study, the subject performs the behavioral test described above during MRI scanning. This procedure uses a strong magnetic field and radio waves to show structural and chemical changes in tissues. During the scan, the patient lies on a table in a narrow cylinder containing a magnetic field for 1- to 1 1/2 hours. The MRI scan allows measurement of the changes in brain blood flow that occur while performing the behavioral study. Study Type: Observational Contact(s): Maryland; National Institute of Mental Health (NIMH), 9000 Rockville Pike Bethesda, Maryland, 20892, United States; Recruiting; Patient Recruitment and Public Liaison Office 1-800-411-1222
[email protected]; TTY 1-866-411-1010 Web Site: http://clinicaltrials.gov/ct/gui/show/NCT00026546;jsessionid=05C5E1 8352E0C8198530744450E413F1 ·
Brain Imaging of Childhood Onset Psychiatric Disorders, Endocrine Disorders and Healthy Children Condition(s): Autoimmune Disease; Congenital Adrenal Hyperplasia; Healthy; Mental Disorder Diagnosed in Childhood; Neurologic Manifestations Study Status: This study is currently recruiting patients. Sponsor(s): National Institute of Mental Health (NIMH)
78 Autism
Purpose - Excerpt: Magnetic Resonance Imaging (MRI) unlike X-rays and CT-scans does not use radiation to create a picture. MRI use as the name implies, magnetism to create pictures with excellent anatomical resolution. Functional MRIs are diagnostic tests that allow doctors to not only view anatomy, but physiology and function. It is for these reasons that MRIs are excellent methods for studying the brain. In this study, researchers will use MRIs to assess brain anatomy and function in normal volunteers and patients with a variety of childhood onset psychiatric disorders. The disorders include attention deficit disorder, autism, congenital adrenal hyperplasia, childhood-onset schizophrenia, dyslexia, multidimesional impairment syndrome, obsessive compulsive disorder, Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infection (PANDAS), stuttering, Sydenham's chorea, and Tourette's syndrome. Results of the MRIs showing the anatomy of the brain and brain function will be compared across age, sex (gender), and diagnostic groups. Correlations between brain and behavioral measures will be examined for normal and clinical populations. Study Type: Observational Contact(s): Maryland; National Institute of Mental Health (NIMH), 9000 Rockville Pike Bethesda, Maryland, 20892, United States; Recruiting; Patient Recruitment and Public Liaison Office 1-800-411-1222
[email protected]; TTY 1-866-411-1010 Web Site: http://clinicaltrials.gov/ct/gui/show/NCT00001246;jsessionid=05C5E1 8352E0C8198530744450E413F1 ·
Longitudinal and Biological Study of Childhood Disintegrative Disorder Condition(s): Pervasive Child Development Disorders; Autism Study Status: This study is currently recruiting patients. Sponsor(s): National Institute of Child Health and Human Development (NICHD); Yale University Purpose - Excerpt: Objectives: I. Compare the developmental course (language acquisition, diagnostic stability, predictors of outcome, and restricted interests and behaviors) of childhood disintegrative disorder versus autism and non-autistic developmental delays. II. Collect data on molecular genetics of proband and family members. Study Type: Observational Contact(s): Connecticut; Yale Child Study Center, New Haven, Connecticut, 06520, United States; Recruiting; Fred Volkmar 203-785-
Clinical Trials 79
2510; Illinois; University of Chicago Cancer Research Center, Chicago, Illinois, 60637, United States; Recruiting; Catherine Lord 773-702-6180. Study chairs or principal investigators: Fred Volkmar, Study Chair; Yale University Web Site: http://clinicaltrials.gov/ct/gui/show/NCT00004458;jsessionid=05C5E1 8352E0C8198530744450E413F1 ·
Methylphenidate in Children and Adolescents with Pervasive Developmental Disorders Condition(s): Attention Deficit Disorder with Hyperactivity; Autistic Disorder; Pervasive Development Disorders Study Status: This study is currently recruiting patients. Sponsor(s): National Institute of Mental Health (NIMH) Purpose - Excerpt: This study will evaluate the efficacy and safety of methylphenidate for treating hyperactivity, impulsiveness, and distractibility in 60 children and adolescents with Pervasive Developmental Disorders (PDD). Methylphenidate (Ritalin)is approved by the Food and Drug Administration for the treatment of children and adolescents with Attention Deficit Hyperactivity Disorder (ADHD). Data supporting its safety and effectiveness in treating ADHD symptoms in PDD are limited. Children and adolescents who do not show a positive response to methylphenidate will be invited to participate in a pilot study of the non-stimulant medication guanfacine (Tenex). Study Type: Interventional Contact(s): see Web site below Web Site: http://clinicaltrials.gov/ct/gui/show/NCT00025779;jsessionid=05C5E1 8352E0C8198530744450E413F1
·
Randomized Study of Fluoxetine in Children and Adolescents With Autism Condition(s): Autism Study Status: This study is currently recruiting patients. Sponsor(s): FDA Office of Orphan Products Development; Mount Sinai Medical Center Purpose - Excerpt: Objectives: I. Evaluate the efficacy of fluoxetine on social and language deficits, global severity and compulsive dimensions of children and adolescents with autism. II. Assess the effectiveness of
80 Autism
this treatment regimen on neurocognitive deficits in this patient population. III. Compare the baseline compulsive severity and treatment outcome in these patients. Study Type: Interventional Contact(s): New York; Albert Einstein College of Medicine, Bronx, New York, 10461, United States; Recruiting; Isabelle Rapin 718-918-1000; Mount Sinai School of Medicine, New York, New York, 10029, United States; Recruiting; Eric Hollander 212-241-3623; New York University Medical Center, New York, New York, 10016, United States; Recruiting; Richard I. Perry 212-562-4504. Study chairs or principal investigators: Eric Hollander, Study Chair; Mount Sinai Medical Center Web Site: http://clinicaltrials.gov/ct/gui/show/NCT00004486;jsessionid=05C5E1 8352E0C8198530744450E413F1 ·
Study of Fluoxetine in Adults With Autistic Disorder Condition(s): Autistic Disorder Study Status: This study is currently recruiting patients. Sponsor(s): FDA Office of Orphan Products Development Purpose - Excerpt: This is a study to determine the effect of fluoxetine in the treatment of adult autism and on functional ability and behavior associated with autism. Evidence suggests abnormal serotonin function in autism. Fluoxetine is a selective inhibitor of the serotonin transporter. Study Type: Interventional Contact(s): New York; Mount Sinai School of Medicine, New York, New York, 10029, United States; Recruiting; Eric Hollander, M.D. 212-241-3623
[email protected]; Eric Hollander, M.D., Principal Investigator. Study chairs or principal investigators: Eric Hollander, MD, Principal Investigator; Mount Sinai School of Medicine New York, New York, United States Web Site: http://clinicaltrials.gov/ct/gui/show/NCT00027404;jsessionid=05C5E1 8352E0C8198530744450E413F1
·
Synthetic Human Secretin in Children with Autism Condition(s): Autism Study Status: This study is currently recruiting patients. Sponsor(s): Repligen Corporation
Clinical Trials 81
Purpose - Excerpt: The purpose of the study is to determine whether multiple doses of secretin are safe and effective in the treatment of children with autism. Phase(s): Phase III Study Type: Interventional Contact(s): see Web site below Web Site: http://clinicaltrials.gov/ct/gui/show/NCT00036244;jsessionid=05C5E1 8352E0C8198530744450E413F1 ·
Synthetic Human Secretin Gastrointestinal Dysfunction
in
Children
with
Autism
and
Condition(s): Autism Study Status: This study is currently recruiting patients. Sponsor(s): Repligen Corporation Purpose - Excerpt: The purpose of the study is to determine the effect of multiple doses of secretin on autism. Phase(s): Phase III Study Type: Interventional Contact(s): Karen A Jauregui 781-250-0111 2017
[email protected]; Ohio; Rakesh Ranjan, MD & Associates, Akron, Ohio, United States; Recruiting; Oregon; Oregon Health Sciences University, Portland, Oregon, United States; Recruiting; Texas; Texas Center for Autism Research and Treatment, San Antonio, Texas, United States; Recruiting Web Site: http://clinicaltrials.gov/ct/gui/show/NCT00036231;jsessionid=05C5E1 8352E0C8198530744450E413F1 ·
Testing a Possible Cause of Reduced Ability of Children to Process Speech in Noise Condition(s): Central Auditory Disease; Healthy Study Status: This study is currently recruiting patients. Sponsor(s): National Institute on Deafness and Other Communication Disorders (NIDCD) Purpose - Excerpt: This study aims to increase our understanding of the difficulty people have recognizing the spoken word, especially in noisy situations. Subjects must be between 12 and 18 years old with no history
82 Autism
of voice disorder, autism, stuttering, aphasia, multiple sclerosis, traumatic brain injury, severe language disorders, and psychiatric disorders. Group A subjects must show reduced speech-in-noise scores and Group B subjects must demonstrate speech-in-noise scores within normal limits. The child will perform a series of hearing tasks that will take from 1.5 to 2 hours, with a break halfway through. A routine hearing test will be given. The child will sit in a sound-treated room wearing earphones and will depress a button in response to sound or to repeat words. The words may be in quiet or mixed with noise. In a test called "immitance," air pressure change and tones will be sent through a miniature probe in the ear for about 1 minute. TEOAE (transient-evoked otoacoustic emission) testing will test the inner ear with clicking sounds. At times, noise will be presented through a probe in the opposite ear. The child will listen to a series of recordings of speech in quiet and in noise and will be asked to repeat what is heard. These recordings will include monosyllabic words with some part of the sounds cut out; words presented with several voices speaking together; two words presented at the same time, one to each ear (child must repeat both words); and two sentences presented at the same time, one to each ear (child must repeat sentence presented to chosen ear). The only risk in this study is tiredness from listening. Study Type: Observational Contact(s): Maryland; National Institute on Deafness and Other Communication Disorders (NIDCD), 9000 Rockville Pike Bethesda, Maryland, 20892, United States; Recruiting; Patient Recruitment and Public Liaison Office 1-800-411-1222
[email protected]; TTY 1-866411-1010 Web Site: http://clinicaltrials.gov/ct/gui/show/NCT00001957;jsessionid=05C5E1 8352E0C8198530744450E413F1 ·
Treatment of Autism in Children and Adolescents Condition(s): Autistic Disorder Study Status: This study is no longer recruiting patients. Sponsor(s): National Institute of Mental Health (NIMH) Purpose - Excerpt: This study is designed to determine the effectiveness of risperidone, a drug treatment for the interfering symptoms of Autistic Disorder in children and adolescents between the ages of 5 and 17. Between 100 and 120 patients will be participating in this research study at five academic medical centers in the United States. The primary aim of the treatment is to reduce impairing behavioral symptoms such as
Clinical Trials 83
aggression, explosive outbursts, or self-injurious behavior, without significant side effects. A secondary aim is to evaluate possible improvement in the level of social relatedness, attention, motor coordination, and short-term memory. This study is a placebo-controlled, double-blind study (neither the investigators nor patients know if the treatment being given is risperidone or an inactive substance, placebo). Patients will be asked to participate for 6 to 8 months. For the first 8 weeks, patients will receive either risperidone or placebo, randomly chosen. At the end of the 8 weeks, those patients who have improved and were on risperidone will be asked to continue on this medication for another 4 months. The last two months of the study are again doubleblind (neither patients nor investigators know treatment). Patients will either continue risperidone treatment or be gradually tapered from risperidone (placebo-substitution). This blinded discontinuation phase will last 2 months during which patients will be closely monitored for recurrence or worsening of symptoms. Patients who have been treated with placebo in the first 8 weeks of the study and have not improved will be treated with risperidone. Weekly visits are required for the first 8 weeks of the study, monthly visits for the following 4 months, and weekly visits during the last 2 months of the study. Phase(s): Phase III Study Type: Interventional Contact(s): see Web site below Web Site: http://clinicaltrials.gov/ct/gui/show/NCT00005014;jsessionid=05C5E1 8352E0C8198530744450E413F1 ·
Randomized Study of Intensive One-on-one Behavioral Treatment Versus Individualized Parent Training in Preschool Aged Children With Autism Condition(s): Autism Study Status: This study is completed. Sponsor(s): National Institute of Mental Health (NIMH); University of California, Los Angeles Purpose - Excerpt: Objectives: I. Determine the effectiveness of intensive one-on-one behavioral treatment in the home or neighborhood compared with at home, individualized, parent training in preschool aged children with autism. II. Identify intake measures that predict differences in outcome between subjects in the experimental group. Study Type: Interventional
84 Autism
Contact(s):. Study chairs or principal investigators: Ole Ivar Lovaas, Study Chair; University of California, Los Angeles Web Site: http://clinicaltrials.gov/ct/gui/show/NCT00004449;jsessionid=05C5E1 8352E0C8198530744450E413F1
Benefits and Risks20 What Are the Benefits of Participating in a Clinical Trial? If you are considering a clinical trial, it is important to realize that your child’s participation can bring many benefits: ·
A new treatment could be more effective than the current treatment for autism. Although only half of the participants in a clinical trial receive the experimental treatment, if the new treatment is proved to be more effective and safer than the current treatment, then those patients who did not receive the new treatment during the clinical trial may be among the first to benefit from it when the study is over.
·
If the treatment is effective, then it may improve your child’s health.
·
Clinical trial patients receive the highest quality of medical care. Experts watch them closely during the study and may continue to follow them after the study is over.
·
People who take part in trials contribute to scientific discoveries that may help others with autism. In cases where certain medical conditions run in families, your child’s participation may lead to better care or prevention for you and other family members. The Informed Consent
Once you agree to have your child take part in a clinical trial, you will be asked to sign an “informed consent.” This document explains a clinical trial’s risks and benefits, the researcher’s expectations of you and your child, and your child’s rights as a patient.
This section has been adapted from ClinicalTrials.gov, a service of the National Institutes of Health: http://www.clinicaltrials.gov/ct/gui/c/a1r/info/whatis?JServSessionIdzone_ct=9jmun6f2 91. 20
Clinical Trials 85
What Are the Risks? Clinical trials may involve risks as well as benefits. Whether or not a new treatment will work cannot be known ahead of time. There is always a chance that a new treatment may not work better than a standard treatment. There is also the possibility that it may be harmful. The treatment your child receives may cause side effects that are serious enough to require medical attention.
How Is Your Child’s Safety Protected? Clinical trials can raise fears of the unknown. Understanding the safeguards that protect your child can ease some of these fears. Before a clinical trial begins, researchers must get approval from their hospital’s Institutional Review Board (IRB), an advisory group that makes sure a clinical trial is designed to protect your child’s safety. During a clinical trial, doctors will closely watch your child to see if the treatment is working and if he or she is experiencing any side effects. All the results are carefully recorded and reviewed. In many cases, experts from the Data and Safety Monitoring Committee carefully monitor each clinical trial and can recommend that a study be stopped at any time. Your child will only be asked to participate in a clinical trial as a volunteer with your informed consent.
What Are Your Child’s Rights in a Clinical Trial? If your child is eligible for a clinical trial, you will be given information to help you decide whether or not you want him or her to participate. You and your child have the right to: ·
Information on all known risks and benefits of the treatments in the study.
·
Know how the researchers plan to carry out the study, for how long, and where.
·
Know what is expected of your child.
·
Know any costs involved for you or your child’s insurance provider.
·
Know before any of your child’s medical or personal information is shared with other researchers involved in the clinical trial.
·
Talk openly with doctors and ask any questions.
86 Autism
After your child joins a clinical trial, you and your child have the right to: ·
Leave the study at any time. Participation is strictly voluntary.
·
Receive any new information about the new treatment.
·
Continue to ask questions and get answers.
·
Maintain your child’s privacy. Your child’s name will not appear in any reports based on the study.
·
Know whether your child participated in the treatment group or the control group (once the study has been completed).
What about Costs? In some clinical trials, the research facility pays for treatment costs and other associated expenses. You or your child’s insurance provider may have to pay for costs that are considered standard care. These things may include inpatient hospital care, laboratory and other tests, and medical procedures. You also may need to pay for travel between your home and the clinic. You should find out about costs before committing your child to participation in the trial. If your child has health insurance, find out exactly what it will cover. If your child does not have health insurance, or if your child’s insurance policy will not cover care, talk to the clinic staff about other options for covering the costs. What Questions Should You Ask before Your Child Participates in a Clinical Trial? Questions you should ask when deciding whether or not to enroll your child in a clinical trial include the following: ·
What is the purpose of the clinical trial?
·
What are the standard treatments for autism? Why do researchers think the new treatment may be better? What is likely to happen to my child with or without the new treatment?
·
What tests and treatments will my child need? Will my child need surgery? Medication? Hospitalization?
·
How long will the treatment last? How often will my child have to come back for follow-up exams?
·
What are the treatment’s possible benefits to my child’s condition? What are the short- and long-term risks? What are the possible side effects?
Clinical Trials 87
·
Will the treatment be uncomfortable? Will it make my child sick? If so, for how long?
·
How will my child’s health be monitored?
·
Where will my child need to go for the clinical trial?
·
How much will it cost to participate in the study? What costs are covered by the study? How much will my child’s health insurance cover?
·
Who will be in charge of my child’s care?
·
Will taking part in the study affect my child’s daily life?
·
How does my child feel about taking part in a clinical trial? Will other family members benefit from my child’s contributions to new medical knowledge?
Keeping Current on Clinical Trials Various government agencies maintain databases on trials. The U.S. National Institutes of Health, through the National Library of Medicine, has developed ClinicalTrials.gov to provide the public and physicians with current information about clinical research across the broadest number of medical conditions. The site was launched in February 2000 and currently contains approximately 5,700 clinical studies in over 59,000 locations worldwide, with most studies being conducted in the United States. ClinicalTrials.gov receives about 2 million hits per month and hosts approximately 5,400 visitors daily. To access this database, simply go to their Web site (www.clinicaltrials.gov) and search by “autism” (or synonyms). While ClinicalTrials.gov is the most comprehensive listing of NIH-supported clinical trials available, not all trials are in the database. The database is updated regularly, so clinical trials are continually being added. The following is a list of specialty databases affiliated with the National Institutes of Health that offer additional information on trials: ·
For clinical studies at the Warren Grant Magnuson Clinical Center located in Bethesda, Maryland, visit their Web site: http://clinicalstudies.info.nih.gov/
·
For clinical studies conducted at the Bayview Campus in Baltimore, Maryland, visit their Web site: http://www.jhbmc.jhu.edu/studies/index.html
88 Autism
·
For trials on neurological disorders and stroke, visit and search the Web site sponsored by the National Institute of Neurological Disorders and Stroke of the NIH: http://www.ninds.nih.gov/funding/funding_opportunities.htm#Clinica l_Trials
General References The following references describe clinical trials and experimental medical research. They have been selected to ensure that they are likely to be available from your local or online bookseller or university medical library. These references are usually written for healthcare professionals, so you may consider consulting with a librarian or bookseller who might recommend a particular reference. The following includes some of the most readily available references (sorted alphabetically by title; hyperlinks provide rankings, information and reviews at Amazon.com): ·
A Guide to Patient Recruitment : Today’s Best Practices & Proven Strategies by Diana L. Anderson; Paperback - 350 pages (2001), CenterWatch, Inc.; ISBN: 1930624115; http://www.amazon.com/exec/obidos/ASIN/1930624115/icongroupinterna
·
A Step-By-Step Guide to Clinical Trials by Marilyn Mulay, R.N., M.S., OCN; Spiral-bound - 143 pages Spiral edition (2001), Jones & Bartlett Pub; ISBN: 0763715697; http://www.amazon.com/exec/obidos/ASIN/0763715697/icongroupinterna
·
The CenterWatch Directory of Drugs in Clinical Trials by CenterWatch; Paperback - 656 pages (2000), CenterWatch, Inc.; ISBN: 0967302935; http://www.amazon.com/exec/obidos/ASIN/0967302935/icongroupinterna
·
The Complete Guide to Informed Consent in Clinical Trials by Terry Hartnett (Editor); Paperback - 164 pages (2000), PharmSource Information Services, Inc.; ISBN: 0970153309; http://www.amazon.com/exec/obidos/ASIN/0970153309/icongroupinterna
·
Dictionary for Clinical Trials by Simon Day; Paperback - 228 pages (1999), John Wiley & Sons; ISBN: 0471985961; http://www.amazon.com/exec/obidos/ASIN/0471985961/icongroupinterna
·
Extending Medicare Reimbursement in Clinical Trials by Institute of Medicine Staff (Editor), et al; Paperback 1st edition (2000), National Academy Press; ISBN: 0309068886; http://www.amazon.com/exec/obidos/ASIN/0309068886/icongroupinterna
Clinical Trials 89
·
Handbook of Clinical Trials by Marcus Flather (Editor); Paperback (2001), Remedica Pub Ltd; ISBN: 1901346293; http://www.amazon.com/exec/obidos/ASIN/1901346293/icongroupinterna
Vocabulary Builder The following vocabulary builder gives definitions of words used in this chapter that have not been defined in previous chapters: Anatomical: Pertaining to anatomy, or to the structure of the organism. [EU] Chorea: The ceaseless occurrence of a wide variety of rapid, highly complex, jerky movements that appear to be well coordinated but are performed involuntarily. [EU] Fluoxetine: The first highly specific serotonin uptake inhibitor. It is used as an antidepressant and often has a more acceptable side-effects profile than traditional antidepressants. [NIH] Guanfacine: A centrally acting antihypertensive agent. The drug lowers both systolic and diastolic blood pressure by activating the central nervous system alpha-2 adrenoreceptors, which results in reduced sympathetic outflow leading to reduced vascular tone. Its adverse reactions include dry mouth, sedation, and constipation. [NIH] Hyperplasia: The abnormal multiplication or increase in the number of normal cells in normal arrangement in a tissue. [EU] Methylphenidate: A central nervous system stimulant used most commonly in the treatment of attention-deficit disorders in children and for narcolepsy. Its mechanisms appear to be similar to those of dextroamphetamine. [NIH] Molecular: Of, pertaining to, or composed of molecules : a very small mass of matter. [EU] Recurrence: The return of a sign, symptom, or disease after a remission. [NIH] Risperidone: A selective blocker of dopamine D2 and serotonin-5-HT-2 receptors that acts as an atypical antipsychotic agent. It has been shown to improve both positive and negative symptoms in the treatment of schizophrenia. [NIH] Stimulant: 1. producing stimulation; especially producing stimulation by causing tension on muscle fibre through the nervous tissue. 2. an agent or remedy that produces stimulation. [EU]
91
PART II: ADDITIONAL RESOURCES AND ADVANCED MATERIAL
ABOUT PART II In Part II, we introduce you to additional resources and advanced research on autism. All too often, parents who conduct their own research are overwhelmed by the difficulty in finding and organizing information. The purpose of the following chapters is to provide you an organized and structured format to help you find additional information resources on autism. In Part II, as in Part I, our objective is not to interpret the latest advances on autism or render an opinion. Rather, our goal is to give you access to original research and to increase your awareness of sources you may not have already considered. In this way, you will come across the advanced materials often referred to in pamphlets, books, or other general works. Once again, some of this material is technical in nature, so consultation with a professional familiar with autism is suggested.
Studies 93
CHAPTER 4. STUDIES ON AUTISM Overview Every year, academic studies are published on autism or related conditions. Broadly speaking, there are two types of studies. The first are peer reviewed. Generally, the content of these studies has been reviewed by scientists or physicians. Peer-reviewed studies are typically published in scientific journals and are usually available at medical libraries. The second type of studies is non-peer reviewed. These works include summary articles that do not use or report scientific results. These often appear in the popular press, newsletters, or similar periodicals. In this chapter, we will show you how to locate peer-reviewed references and studies on autism. We will begin by discussing research that has been summarized and is free to view by the public via the Internet. We then show you how to generate a bibliography on autism and teach you how to keep current on new studies as they are published or undertaken by the scientific community.
The Combined Health Information Database The Combined Health Information Database summarizes studies across numerous federal agencies. To limit your investigation to research studies and autism, you will need to use the advanced search options. First, go to http://chid.nih.gov/index.html. From there, select the “Detailed Search” option (or go directly to that page with the following hyperlink: http://chid.nih.gov/detail/detail.html). The trick in extracting studies is found in the drop boxes at the bottom of the search page where “You may refine your search by.” Select the dates and language you prefer, and the
94 Autism
format option “Journal Article.” At the top of the search form, select the number of records you would like to see (we recommend 100) and check the box to display “whole records.” We recommend that you type in “autism” (or synonyms) into the “For these words:” box. Consider using the option “anywhere in record” to make your search as broad as possible. If you want to limit the search to only a particular field, such as the title of the journal, then select this option in the “Search in these fields” drop box. The following is a sample of what you can expect from this type of search: ·
Developing an Information Pack for the Asian Carers of People with Autism Spectrum Disorders Source: International Journal of Language and Communication Disorders. 36(Supplement): 216-221. 2001. Contact: Available from Taylor and Francis Inc. 1900 Frost Road, Suite 101, Bristol, PA 19007. Summary: The complexity and interaction of the cognitive, social and communicative impairments within autism spectrum disorder (ASD) are difficult to explain. At present, the information needs for people of Asian descent about ASD are not being met to an equal standard with their white majority counterparts. This article describes an investigation that forms the basis for the development of an information package for the Asian caregivers of people with ASD and learning disabilities. The authors present the results of semi structured interviews and planning for questionnaires with three different linguistic Asian groups (Urdu, Gujarati, and Bengali). The views, attitudes, and awareness of autism, knowledge of support services, and perceived priority of needs are analyzed for the three different communities. The authors conclude with recommendations as to whether separate information is needed by each culture or whether a single information pack can be used and presented in each language format. They determine that one audiovisual presentation about ASD and adults with learning disabilities can meet the needs of direct caregivers from these different Asian communities in Bradford, England. Each community would require a spoken dialog in its own tongue. The authors also discuss the possible presentation format in which the information can be produced. They note that contact with religious leaders, women's support groups, and community leaders is also important. 1 table. 8 references.
·
Development of Current Functioning in Adolescents with Asperger Syndrome: A Comparative Study Source: Journal of Child Psychology and Psychiatry and Allied Disciplines. 42(2): 227-240. February 2001.
Studies 95
Contact: Available from Cambridge University Press. 110 Midland Avenue, Port Chester, NY 10573-4930. Summary: This article reports on a study in which adolescents with Asperger syndrome (AS: without delay in speech development, diagnosed according to ICD 10 clinical criteria) were compared with a group with high functioning autism (HFA: all with delayed speech development), and a group with conduct disorder (CD). Family and genetic studies suggest that AS and autism form part of the same spectrum, whereas the social impairments in CD are assumed to have different origins. The researchers' aims were to explore the relationships between early speech development and other aspects of functioning in autistic disorders, and to compare autistic and nonautistic social impairments. Early and current behavior and IQ profiles were investigated. The CD group were clearly different from both the AS and HFA groups. The AS group tended to have less severe early behavioral abnormalities than the HFA groups, and were unlikely to have speech abnormalities, but other communicative, social, and restricted or stereotyped behavioral difficulties were largely of a similar pattern to the abnormalities of the HFA group. Eighty percent of the AS group met criteria for autism on the diagnostic algorithm. By adolescence, the AS group were reported to be as abnormal as the HFA group but in structured one-to-one interaction their conversation was better. IQ profile in the AS group showed relative strength on verbal measures, unlike the HFA group, but relatively good performance on the Block Design subtest was a feature of both the AS and HFA groups. The results indicate that similar behavioral manifestations may arise by adolescence despite differences in speech development. The authors call for follow up studies and further family investigations to clarify the origins of these and other patterns of autistic development. 3 appendices. 2 figures. 3 tables. 38 references. ·
Identifying Autism Susceptibility Genes Source: Neuron. 28(1): 19-24. October 2000. Contact: Available from Cell Press. Neuron, 1100 Massachusetts Avenue, Cambridge, MA 02138. (617) 661-7057. Fax (617) 661-7061. E-mail:
[email protected]. Website: www.neuron.org. Summary: This review article focuses on the identification of susceptibility loci for autism. The genetic mechanisms predisposing to autism and related milder phenotypes are unknown. Neither the level of familial risk nor the very different concordance rates in monozygotic and dizygotic twin pairs is compatible with a simple monogenic model. Most cases seem likely to arise on the basis of multiple susceptibility genes.
96 Autism
Models using family and twin data for autism and related phenotypes suggest that between two and 10 loci may be implicated. Although various chromosomal abnormalities have been reported in people who have autism, one potentially specific association is with abnormalities of an unstable region of chromosome 15 (15q11-q13). The most common abnormalities are interstitial duplications or a supernumerary pseudodicentric chromosome 15 in patients who have autism spectrum disorders. When the parental origin has been investigated, all of the 15q duplications associated with autism were derived from the mother. Sex chromosome abnormalities have rarely been reported in association with autism. Genetic mapping relies on tracking the cosegregation of polymorphic deoxyribonucleic markers with a disorder. If a statistically significant association between the disorder and markers is found at an identified location, it implies a nearby susceptibility locus. The article discusses the use of linkage and association in genetic mapping and reports on association and genome wide linkage studies on autism. Linkage studies suggest that there is a high probability that a region on chromosome 7q contains a susceptibility locus for autism. Although the 15q region shows weaker evidence for linkage, the relatively high incidence of chromosomal abnormalities supports a role for this region in autism etiology. 1 figure. 2 tables. 22 references. ·
Brief Report: Brief Syntactic Analysis in Asperger Syndrome: A Preliminary Study Source: Journal of Autism and Developmental Disorders. 30(1): 67-70. February 2000. Contact: Available from Plenum Publishing Corporation. Subscription Department, 233 Spring Street, New York, NY 10013. (212) 620-8468. Fax (212) 807-1047. Summary: Asperger syndrome (AS) is characterized by autistic social dysfunction and idiosyncratic interests in the absence of a significant delay in language acquisition and cognitive development. This article offers a brief report on a study that investigated the current diagnostic criteria of AS and to determine if certain assessment techniques (King, 1987) can be used to study syntactic abnormalities in subjects with autism and related disorders. Speech samples (7 to 20 minutes) were collected during structured taped interviews and later transcribed. The interview consisted of a picture description task, followed by a semistructured session consisting of open ended questions. AS subjects scored higher than the controls in the percentage of well formed major sentences, mean maximum depth of embedding, and mean length of utterance. No differences were found in their percentage of deviant sentences,
Studies 97
percentage of simple sentences, and in the dysfluency index. On the whole, subjects with AS produced longer sentences with higher levels of structural complexity while controls with high functioning autism (HFA) used either short sentences or longer sentences with dysfluencies and errors. Overall, these findings support the clinical impression that persons with AS have better and more complex speech than those with HFA, at the average age of 15 to 16 years. It is important to note, however, that AS cannot be distinguished from HFA on the basis of syntax alone. Nor is it clear as to how the two groups show changes over time in their syntactic skills. 9 references. ·
Brain Wiring in Autism Source: ADVANCE for Speech-Language Pathologists and Audiologists. 9(1): 6-9. January 4, 1999. Contact: Available from Merion Publications, Inc. 650 Park Avenue, Box 61556, King of Prussia, PA 19406-0956. (800) 355-5627, ext. 279. E-mail:
[email protected]. Website: www.advanceweb.com. Summary: This article, from a newsletter for speech language pathologists and audiologists, describes research on the deficits in cognitive processes in people with autism, the brain location of these deficits, and the behavioral basis of autism. The author describes the work of Dr. Nancy Minshew and her collaborators from the University of Pittsburgh, the Center for Cognitive Brain Imaging at Carnegie Mellon University (CMU) in Pittsburgh, and the Division of Neurology at Case Western Reserve University Medical School in Cleveland. Their studies will compare people with high functioning autism to control subjects in order to pinpoint the critical differences in language, spatial, and executive processes. The article describes the research being undertaken, the results so far, the neurophysiology of the brain that may be involved, the part of the research that measures the reflexive and voluntary control of eye movements, the use of brain imaging studies, and the impact of information processing on coping in real life settings. The researcher emphasizes that discovering the cognitive basis of behavior and where the problems with the wiring of the brain lie in autism will lead to more effective intervention and, possibly, treatment. The article concludes with the addresses and contact information of the researchers interviewed. 3 figures.
·
AAC and Autism Source: ADVANCE for Speech-Language Pathologists and Audiologists. 9(1): 13-15. January 4, 1999.
98 Autism
Contact: Available from Merion Publications, Inc. 650 Park Avenue, Box 61556, King of Prussia, PA 19406-0956. (800) 355-5627, ext. 279. E-mail:
[email protected]. Website: www.advanceweb.com. Summary: This article, from a newsletter for speech language pathologists and audiologists, describes research on augmentative and alternative communication (AAC) systems for children with autism who demonstrate difficulty in developing functional speech. The researchers profiled in the study caution that, due to the complex nature of autism, the selection of an appropriate AAC system can be challenging. Clinicians should consider a child's treatment history, age, and level of maladaptive behavior when determining whether an AAC system is appropriate. The author describes some of the uses for an AAC system, the need for intense repetition when training a child with autism to use AAC devices, the problem of self stimulatory behavior in autism, competing behaviors that can impede the use of an AAC device, the use of AAC devices to promote speech, pragmatic issues such as the environment and communication partners, and the types of communication options, including sign language, picture communication boards, picture exchange communication systems (PECS), and high tech systems. The article concludes with the address and contact information for the researcher interviewed. 3 figures. ·
Diagnostic Assessment of Communicative and Interactive Behaviours in Children with Autism and Receptive Language Disorder Source: European Child and Adolescent Psychiatry. 9(4): 295-300. December 2000. Contact: Available from Springer-Verlag New York, Inc. Journal Fulfillment Department, P.O. Box 2485, Secaucus, NJ 07096-2485. E-mail:
[email protected]. Website: www.springer.ny.com. Summary: Children with autism and children with a severe specific receptive language disorder both show clear deficits in communicative language skills and in social relationships. This article reports on a study in which the usefulness of the Autism Diagnostic Observation Schedule (ADOS) in the differential diagnosis between these two groups of developmentally impaired children is assessed. The study included 11 children with early infantile autism and 20 children with a specific receptive language disorder; an additional 18 children with an expressive language disorder were used as a control group. The ADOS was individually administered to all children by the same examiner. The results showed that on most of the ADOS measures, the autistic children were clearly more deviant than the language impaired children. There were no significant differences between the two groups of language
Studies 99
impaired children. Eight out of 11 autistic children reached the defined cut off values on the measures 'language and communication' and 'social interaction' of the ADOS algorithm, whereas only three autistic children did so on the measure 'stereotyped behavior.' None of the language impaired children reached the cut off values on more than one measure. The ADOS allowed for good assessment of certain types of behavior. The ADOS can be a useful tool in the discrimination of children with high functioning autism and children with a receptive or expressive language disorder. However, to confirm the diagnosis of infantile autism, additional information from the parents is required. 4 tables. 17 references. ·
Pervasive Developmental Delay in Children Presenting as Possible Hearing Loss Source: Laryngoscope. 109(1): 129-135. January 1999. Contact: Available from Lippincott Williams and Wilkins. 12107 Insurance Way, Hagerstown, MD 21740. (800) 638-3030 or (301) 714-2300. Fax (301) 824-7390. Summary: Children who fail to develop adequate language skills and or appropriate social skills by age 2 years are often referred to the department of otolaryngology for otolaryngologic examination and evaluation of possible hearing deficits. Discovering a gross disparity between hearing function and language ability often uncovers an underlying developmental disorder satisfying criteria for diagnosis on the spectrum of autism and pervasive developmental delay (PDD). This article reports on a study that reviewed 4 years of charts of children presenting for possible hearing loss; the review identified 15 children who were later diagnosed with PDD. Males outnumbered females 4 to 1, with the average age of referral being 2 years. One third of the patients displayed middle ear disease that improved with PE tube placement. One third of the patients showed brainstem conduction dysfunction on auditory brainstem evoked response (ABR) testing. The authors conclude that children with developmental delays, especially higher functioning ones, may present with a myriad of language and communication deficits that are often mistakenly attributed to hearing loss. The authors stress that the otolaryngologist has a unique opportunity to identify these autistic children and initiate their evaluation and management. 5 tables. 17 references.
100 Autism
·
Prenatal, Perinatal, and Neonatal Factors in Autism, Pervasive Developmental Disorder-Not Otherwise Specified, and the General Population Source: Pediatrics. 107(4): [6 p.]. April 2001. Contact: Available from American Academy of Pediatrics. 141 Northwest Point Boulevard, Elk Grove Village, IL 60007-1098. (888) 227-1773. Fax (847) 434-8000. E-mail:
[email protected]. Website: www.pediatrics.org. Full text of this article is available at www.pediatrics.org/cgi/content/full/107/4/e63. Summary: This article reports on a study undertaken to examine various prenatal, perinatal, and neonatal factors in children with autism and in children with pervasive developmental disorder not otherwise specified (PPD NOS); the study compared the incidence of each factor to that of the normal population. The 74 participants (66 males, 8 females) were diagnosed with autism between age 2.5 and 4 years. At age 5, all participants were reevaluated, resulting in 61 autistic and 13 PDD NOS diagnoses. The study examined 28 factors in these 2 groups, using medical records and parental interviews. Incidences were compared with those of the United States population as reported in the Report of Final Natality Statistics (1995). Factors included maternal age, parity (number of pregnancies), number of previous abortions or miscarriages, gestational age, bleeding in pregnancy, vaginal infections, fever, preeclampsia, gestational diabetes, rhesus (blood factor) incompatibility, smoking during pregnancy, use of contraception at conception, induced labor, Cesarean section, nonvertex presentation, forcep extraction, vacuum extraction, prolonged labor (longer than 20 hours), precipitous labor (less than 3 hours), multiple gestation, cord complication (prolapse, around the neck, knotted), trauma on delivery, low birth weight, low Apgar score, respiratory distress syndrome, oxygen treatment, hyperbilirubinemia, seizures, and birth defect. Although most of the factors showed comparable incidences between the index and control groups, several factors showed statistically significant differences. The autism group was found to have a significantly higher incidence of uterine bleeding, a lower incidence of maternal vaginal infection, and less maternal use of contraceptives during conception when compared with the general population. Similarly, the PDD NOS group showed a higher incidence of hyperbilirubinemia when compared with the general population. The results of this study support previous findings. However, the authors caution that interpretation of these results is difficult. Additional studies are needed to corroborate and strengthen these associations, as well as to determine the possibility of an underlying unifying pathological process. 5 tables. 25 references.
Studies 101
·
Pervasive Developmental Disorders in Preschool Children Source: JAMA. Journal of the American Medical Association. 285(24): 3093-3099. June 27, 2001. Contact: Available from American Medical Association. P.O. Box 10946, Chicago, IL 60610-0946. (800) 262-2350 or (312) 670-7827. Fax (312) 4645831. Website: jama.ama-assn.org. Summary: Prevalence rates of autism spectrum disorders are uncertain, and speculation that their incidence is increasing continues to cause concern. This article reports on a study undertaken to estimate the prevalence of pervasive developmental disorders (PDDs) in a geographically defined population of preschool children. The survey was conducted between July 1998 and July 1999 in 15,500 children aged 2.5 to 6.5 years in Staffordshire, England. The children were screened for developmental problems. Children with symptoms suggestive of a PDD were intensively assessed by a multidisciplinary team, which conducted standardized diagnostic interviews and administered psychometric tests. A total of 97 children (79.4 percent male) were confirmed to have a PDD. The prevalence of PDDs was estimated to be 62.6 per 10,000 children. Prevalences were 16.8 per 10,000 children for autistic disorder and 45.8 per 10,000 for other PDDs. The mean age at diagnosis was 41 months, and 81 percent were originally referred by health visitors (nurse specialists). Of the 97 children with a PDD, 25.8 percent had some degree of mental retardation and 9.3 percent had an associated medical condition. The authors note that these results suggest that rates of PDD are higher than previously reported. 1 figure. 3 tables. 36 references.
·
Child'sTalk for Children with Autism and Pervasive Developmental Disorder Source: International Journal of Language and Communication Disorders. 36(Supplement): 469-473. 2001. Contact: Available from Taylor and Francis Inc. 1900 Frost Road, Suite 101, Bristol, PA 19007. Summary: This article describes a research assessment protocol and early intervention approach (Child'sTalk) designed for use by multidisciplinary professionals with children who have the severe social communication deficits of early autism and pervasive developmental disorder (PDD). The assessment analyses the specific pattern of social communication impairment in each child and defines the characteristics of the dyad communication between parent and child. The intervention aims to identify facilitative (coping) strategies, using video feedback, which lead to close interpersonal interaction between the child and their
102 Autism
parents. Parents can reflect on their own interaction and identify which strategies successfully engage their child. The six stages of Child'sTalk are: establishing joint attention, synchrony, sameness, variation, communicative teasers, and modeling. Child'sTalk aims to facilitate adaptations to the child's level of communication by sensitively and finely tuning the interaction and mutual sharing of intentions as a support for the emergence of communication. 8 references. ·
Pervasive Developmental Disorders: A 10-Year Review Source: Journal of the American Academy of Child and Adolescent Psychiatry. 39(9): 1079-1095. September 2000. Contact: Available from Lippincott Williams and Wilkins. Subscription Department, P.O. Box 350, Hagerstown, MD 21740-0350. (800) 638-3030. Website: www.aacap.org/journal/journal.htm. Summary: This article summarizes recent advances about the nature, diagnosis, and treatment of pervasive developmental disorders (PDDs). The author conducted a review of MEDLINE databases, books, and book chapters published between July 1989 and November 1999. Clinical and genetic studies support expansion of the concept of autism to include a broader spectrum of social communication handicaps. The prevalence of autism is approximately 1 per 2,000; the prevalence of autism and Asperger's disorder together is 1 per 1,000. The Checklist for Autism in Toddlers is a useful screening instrument for 18 month old children; the Autism Diagnostic Interview Revised and the Autism Diagnostic Observation Schedule are instruments of choice for research. Although twin and family studies clearly support genetic factors as important in autism, linkage analysis studies indicate that many genes may be involved. There is no one treatment of choice. Social pragmatic approaches, augmented by individualized strategies and social coaching, may be best for teaching social communication skills. Pharmacological interventions have a limited role in improving social communication, but selective serotonin reuptake inhibitors and atypical neuroleptic medications may help lessen aggression, hyperactivity, and other secondary problems. The authors concludes by calling for continued private and government support of basic and applied research on PDDs. 209 references.
·
Two-Year Outcome of Preschool Children with Autism or Asperger's Syndrome Source: American Journal of Psychiatry. 157(12): 1980-1987. December 2000.
Studies 103
Contact: Available from American Psychiatric Publishing Group. 1400 K Street NW, Washington, DC 20005. (800) 368-5777 or (202) 682-6240. Email:
[email protected]. Summary: Asperger's disorder is a type of pervasive developmental disorder without clinically significant cognitive or language delay. There are no data, however, on the outcome of children with Asperger's disorder or on whether their outcome differs from that of children with autism. This article reports on a study undertaken to compare the outcome of groups of children with these disorders over a period of 2 years on variables independent of the defining criteria and to identify variables that might account for these differences. Children who received a diagnosis of autism (n = 46) or Asperger's syndrome (n = 20) on the basis of a diagnostic interview and who had an IQ in the nonretarded range were given a battery of cognitive, language, and behavioral tests. Families were contacted roughly 2 years after the date of their enrollment in the study, and many of the tests were readministered. Children with Asperger's syndrome had better social skills and fewer autistic symptoms 2 years after study enrollment than the children with autism. The differences in outcome could not be explained by initial differences in IQ and language abilities. Children with autism who had developed verbal fluency at follow up were very similar to the children with Asperger's syndrome at study enrollment. The authors conclude that it appears that Asperger's disorder and autism represent parallel but potentially overlapping developmental trajectories. 3 tables. 33 references.
Federally-Funded Research on Autism The U.S. Government supports a variety of research studies relating to autism and associated conditions. These studies are tracked by the Office of Extramural Research at the National Institutes of Health.21 CRISP (Computerized Retrieval of Information on Scientific Projects) is a searchable database of federally-funded biomedical research projects conducted at universities, hospitals, and other institutions. Visit the CRISP Web site at http://commons.cit.nih.gov/crisp3/CRISP.Generate_Ticket. You can
21 Healthcare projects are funded by the National Institutes of Health (NIH), Substance Abuse and Mental Health Services (SAMHSA), Health Resources and Services Administration (HRSA), Food and Drug Administration (FDA), Centers for Disease Control and Prevention (CDCP), Agency for Healthcare Research and Quality (AHRQ), and Office of Assistant Secretary of Health (OASH).
104 Autism
perform targeted searches by various criteria including geography, date, as well as topics related to autism and related conditions. For most of the studies, the agencies reporting into CRISP provide summaries or abstracts. As opposed to clinical trial research using patients, many federally-funded studies use animals or simulated models to explore autism and related conditions. In some cases, therefore, it may be difficult to understand how some basic or fundamental research could eventually translate into medical practice. The following sample is typical of the type of information found when searching the CRISP database for autism: ·
Project Title: A Genomewide Search for Autism Susceptibilty Loci Principal Investigator & Institution: Geschwind, Daniel H.; Director Neurogenetics Program; Neurology; University of California Los Angeles Box 951361, 405 Hilgard Ave Los Angeles, Ca 90095 Timing: Fiscal Year 2002; Project Start 5-MAR-2002; Project End 8-FEB2007 Summary: (provided by applicant): Autism is a devastating neuropsychiatric condition with unknown pathophysiology and for which there are no current effective treatments. Autism spectrum disorders are not uncommon and have an estimated incidence of approximately 1/1000. Although autism has a multifactorial etiology, it has a large genetic component. Recent genome scans have identified several potential chromosomal loci, but clear evidence for genetic heterogeneity has emerged, and the regions identified remain wide and in most cases only suggestive linkage to these regions has been found. Therefore, while a genetic approach to understanding autism etiology is likely to be fruitful, collaborative efforts involving large pooled samples will be necessary to achieve maximal power to identify disease critical regions narrow enough to permit positional cloning of autism susceptibility genes. A collaborative effort to produce an open data and biomaterials resource for the research community, the autism genetic resource exchange (AGRE), has been formed to facilitate the identification of autism susceptibility genes. This collaborative multi-site proposal seeks to expand and study the AGRE sample so as to identify and narrow autism susceptibility loci. Three hundred new multiplex families with autism spectrum disorders will be ascertained, for a total of 550 families in AGRE. A tiered, whole genome scan initially at 10 cM resolution, followed by fine mapping will be conducted to identify novel autism loci and more definitively confirm those previously identified. Phenotypic information will be used to help stratify the population so as to limit heterogeneity, as well as permit quantitative trait analysis
Studies 105
focused on several heritable neurobehavioral components of autism. In parallel, karyotyping, and FISH using subtelomeric probes, and probes for several specific regions where chromosomal anomalies are highly associated with autism will be done. Finally, we have developed a novel, inexpensive, microarray-based method for SNP genotyping that will be used for association analyses, to permit narrowing of susceptibility regions identified. All phenotypic and genotype data will be made accessible via the Internet on a rolling basis, further enhancing the value of this resource to the community. Website: http://commons.cit.nih.gov/crisp3/CRISP.Generate_Ticket ·
Project Title: A Translational Autism Program at the M.I.N.D. Institute Principal Investigator & Institution: Amaral, David G.; Professor; Psychiatry; University of California Davis 1 Shields Ave Davis, Ca 95616 Timing: Fiscal Year 2001; Project Start 5-SEP-2001; Project End 1-AUG2002 Summary: (Provided by applicant): The UC Davis M.I.N.D. (Medical Investigation of Neurodevelopmental Disorders) Institute was founded in 1998 as an interdisciplinary organization to study autism and other neurodevelopmental disorders. This unique collaboration among parents, community leaders, and researchers and clinicians at UC Davis takes a three-pronged approach to solving neurodevelopmental disorders; it brings together resources at UC Davis, from the Sacramento community and from the broader UC system to focus on basic and clinical research, patient treatment, and the education of patients, families and providers. Current activities include: an aggressive recruitment campaign to develop a critical mass of researchers, clinicians and educators; the construction of a campus of five buildings comprising approximately 142,000 sq. ft. of space that will include a comprehensive pediatric clinic, two research buildings, a community center and a laboratory school; and the expansion of an active intramural and extramural research program. The vision of the M.I.N.D. Institute is entirely consistent with the establishment of a translational Center of Excellence in Autism Research as outlined in the Children's Health Act of 2000. However, with the intense activity currently underway at the Institute and our need to incorporate many new Institute faculty into the preparation of a Center grant, we believe that it is premature to submit an application for the December deadline. The Developmental Grants for Autism Centers of Excellence provide a useful mechanism for enabling comprehensive discussion, consultation and decision-making in preparation for submission of such an application in 2002. During the planning year we will focus on defining those areas of translational
106 Autism
research and community outreach that the M.I.N.D. Institute is best suited to pursue as an Autism Center of Excellence. A broad-based, twenty member, leadership team will participate in weekly brainstorming sessions to shape the aims of our expected application. Intensive two-day Focus Group sessions, during which consultants will not only present their latest data, but also advise the Institute on such promising areas as Biomarkers Research, Clinical Drug Trials, and Innovative Treatments for Autism, will inform the deliberations of this group. We will pursue collaborative relationships with California State University, Sacramento, and several Sacramento County school districts to establish pilot educational programs for children with autism. Evaluation, selection and implementation of a comprehensive database management system will be a priority for ensuring the seamless flow of information between the Institute's clinical and research efforts. Finally, we will explore the feasibility of using telemedicine technology for clinical care and education in autism. Website: http://commons.cit.nih.gov/crisp3/CRISP.Generate_Ticket ·
Project Title: Animal Models of Autism and Mechanisms of Injury Principal Investigator & Institution: Gudas, Lorraine J.; Professor and Chair; University of Rochester Rochester, Ny 14627 Timing: Fiscal Year 2000 Summary: Identification of the embryonic stage when injury can cause autism has led to the insight that the disorder has initiated by changes in the developing brain stem. The shortening of the hindbrain and loss of cranial nerve neurons in an animal model of the insult and a human case of autism resemble features of the Hoxa-1 transgenic knockout mouse. Thus, it is now possible to suggest a unifying hypothesis regarding the multiple etiologies of autism: We propose that teratogens and genetic defects lead to similar developmental changes in the brain stem because mutations of early developmental genes are the cause of familial cases and the teratogens which cause the disease act by interfering with function of the same genes. The new finding that tone of the candidate genes is abnormal in some cases of autism supports this hypothesis. Using mice transgenic for the reporter lac Z, which have been created to signal the level of expression of Hoxa-1, we shall compare the effects of valproic acid (a known cause of autism) and 2-ethyhexanoic acid (a teratogen with similar somatic effects) to the effects of retinoic acid (a teratogen known to interfere with the Hox gene cascade, and now suspected to be cause of autism) on Hox gene expression. In addition, we shall compare the expression of markers on the rhombomeres in embryos from the same litters, using in situ hybridization. In older embryos we
Studies 107
shall compare the effects of the three teratogens on the morphology of the developing brain stem, using immunocytochemistry and of traditional serial sectioning with cresyl violet staining to examining the early structure of the cranial nerves, ganglia, and nuclei. We shall mutation mutations of early developmental genes identified in Project III to create a house model of genetically- induced autism, and examined the morphology of the brain stem in transgenic mutants. Subjecting heterozygotes of the genetic model to teratogens will tell us whether teratologic injury can interact with genetic abnormality to alter the brain stem. The animal models developed in this project will be evaluated behaviorally in Project II. The studies of Project I will help us predict which teratogens are likely causes of autism, and further our understanding of the developmental origin of the brain abnormalities associated with the disorder. Website: http://commons.cit.nih.gov/crisp3/CRISP.Generate_Ticket ·
Project Title: Autism--Brain Morphometry and Cognitive Neuroscience Principal Investigator & Institution: Herbert, Martha R.; Instructor; Massachusetts General Hospital 55 Fruit St Boston, Ma 02114 Timing: Fiscal Year 2000; Project Start 5-JUL-1999; Project End 0-JUN2004 Summary: Autism is a behavioral syndrome characterized by impairments in social interactions and communication and by repetitive, stereotyped behavior. To date there is no clear and consistently replicated neuroanatomic correlate. While specific, focal core neuroanatomic or cognitive deficits have been sought, this study will examine the syndrome's more pervasive features. The purpose of this study is to understand these pervasive abnormalities at the levels of brain structure and of structure-function relationships. The finding of large brains in autism suggest a pervasive abnormality of the brain and abnormal regulation of brain development whose distributed consequences cannot be fully characterized by focal studies. Moreover, the higher-level cognitive functions disordered in autism are likely to have distributed rather than strictly localized or modular neuroanatomical correlates. By using a novel, detailed neuroanatomically-based whole-brain morphometric method, we will be able for the first time to characterize pervasive, distributed brain volumetric abnormalities. The study will be performed on subjects from two NIH-funded projects, the Autism and Language Disorders Nosology Project, NINDS 20489; and the Language in Autism: Clinical and Basic Studies Project, NIDCD PO1 DC 03610. The Specific Aims will be 1) to test the morphometric hypothesis that dysregulated brain development in autism will manifest in abnormalities
108 Autism
in morphometric quantifiers of size, scaling, and profiles of variance, and 2) to test the developmental cognitive neuroscience hypothesis that key abnormal cognitive and linguistic functions in autism will correlate better with distributed morphometric abnormalities such as deviations in neuroanatomic scaling and profiles of variance than with localized deviations in size of neuroanatomic modular units. The system-oriented whole brain morphometric profiles should provide new classes of neuroanatomical correlates that are more appropriate for the widespread higher-level cognitive functions disordered in autism. The nature of developmental dysregulation and neural systems abnormalities in this disorder should thus become clearer. Website: http://commons.cit.nih.gov/crisp3/CRISP.Generate_Ticket ·
Project Title: Brain Protein Abnormalities in Autism Principal Investigator & Institution: Junaid, Mohammed A.; Institute for Basic Res in Dev Disabil Developmental Disabilities New York, Ny 10314 Timing: Fiscal Year 2001; Project Start 5-JUL-2001; Project End 0-JUN2004 Summary: (provided by applicant): Autism refers to a group of pervading neurodevelopmental disabilities that are characterized by abnormalities in social, communicative and behavioral functioning. The symptoms of autism are detectable in early childhood, and persist throughout the life span of affected individuals. The prevalence of autism in general population is as high as 1 in 1000, and affects individuals of every race and ethnic background. Most subjects with autism have mental deficiencies, and often develop epileptic seizures. While there are strong evidences in support of underlying genetic etiology, so far, molecular biological defects of autism are unknown. Our preliminary data in three out of four autopsy brain samples from individuals affected with autism, showed complete absence of a 29 kDa protein with a pI of about 5.9 and marked increase of a 36 kDa protein with a pl of about 4.9. The fourth brain lack these abnormalities but showed absence of another protein of molecular weight 22 kDa with a pI of about 7.0. The objectives of the present research proposal are to isolate and characterize these proteins, and determine whether analyses for these aberrant proteins can be used as biological markers in identifying certain types of autism. To reach this goal, we will partially purify these proteins from autopsy human brain samples using classical chromatographic approaches. Amino-terminal or internal sequences of these proteins will be determined, and a sequence comparison with the protein sequence database will reveal whether these are novel proteins. If these are proteins of known functions, then we will develop biochemical assays for
Studies 109
their detection in tissues and lymphoid cells. These biological marker will be based either on functions, or levels of these proteins determined by western blot analyses using antibodies developed against synthetic peptides. Website: http://commons.cit.nih.gov/crisp3/CRISP.Generate_Ticket ·
Project Title: Collaborative Linkage Study of Autism Principal Investigator & Institution: Folstein, Susan E.; Professor; New England Medical Center Hospitals 750 Washington St Boston, Ma 02111 Timing: Fiscal Year 2000; Project Start 1-MAY-1996; Project End 0-APR2003 Summary: This is an application for a Collaborative R01 (involving two independent sites: Tufts-New England Medical Center; PI: Susan Folstein; and, The University of Iowa; PI: Joseph Piven) to continue our efforts to find genetic loci linked to the autism phenotype. Following an administrative supplement in year 2 of this 3 year grant we were funded to: 1) complete ascertainment, diagnostic evaluation and blood collection on 150 autism sib pair families; and, 2) to genotype the first screening set of 75 sib pair families. We have surpassed the goals of this project: in the first 2 years we have completed a genome screen (349 markers) of 76 sib pair families (Stage 1 Screening Set). By the end of Year 3 we will have ascertained, collected DNA and completely assessed 176 autism sib pair families; collected DNA and completely assessed 80 proband-parent trios; and, ascertained 60 moderate sized pedigrees for a genome screen proposed for the next 5 year granting period, and done some follow-up work on findings from the Stage 1 screen. In our Stage 1 screen we have identified 22 regions providing suggestive evidence of linkage for follow up in our Stage 2 screen using an additional 100-130 families. Additionally, we have strong evidence of linkage to a locus on chromosome 13 (D13S800) with a maximum multipoint heterogeneity lod score of 3.7. 35-40 percent of our families appear to be linked to this locus. We have found maximum lod scores greater than 2.0 on chromosomes 4 and 16, and suggestive evidence of linkage to a region on chromosome 7 which has been recently reported to show linkage in the only other genome screen of autism published to date. Finally, we have detected several possible duplications and deletions in the q11-13 region of Chr 15, confirming other reports. Based on these preliminary data, it appears likely that locus heterogeneity is a factor in the genetic etiology of autism. In this next five year granting period we propose to employ a variety of novel and complementary strategies (including varying phenotypic definition, family structures examined, and molecular and analytic approaches) available through the rich and varied expertise of our
110 Autism
collaborative group of senior clinical, molecular and statistical genetics investigators, to resolve the genetic complexity of this disorder. Specifically we propose to: 1) follow up the Stage 1 findings in 100-130 autistic sib pairs families; 2) repeat the two-stage analysis of the nuclear (sib pair) families, adding in information on the Pervasive Developmental Disorder (PDD) and broader autism (BAP) phenotypes in first-degree relatives without autism; 3) conduct a linkage study of autism, as well as a study of the PDD/BAP phenotype, in 60 moderate size pedigrees; and, 4) examine the prevalence of chr. 15 duplications/deletions in autism, and a large group of controls. Website: http://commons.cit.nih.gov/crisp3/CRISP.Generate_Ticket ·
Project Title: Divalproex Sodium/Placebo in Child/Adolesent Autism Principal Investigator & Institution: Hollander, Eric; Professor; Psychiatry; Mount Sinai School of Medicine of Nyu of New York University New York, Ny 10029 Timing: Fiscal Year 2001; Project Start 0-SEP-2001; Project End 1-AUG2004 Summary: (provided by applicant): Autism is a pervasive developmental disorder affecting social, communicative, and repetitive behavior domains and cognitive function, and has dramatic impact on quality of life. It is also frequently accompanied by aggression, self-injury, impulsivity, and mood instability, as well as EEG abnormalities and seizure disorders. While large scale studies of childhood autism are currently underway with SSRI's and atypical neuroleptics, little controlled data is available with other agents that might target these core and associated symptoms of autism. This application aims to determine whether there is scientific evidence to support the practice of prescribing divalproex sodium (DS)(valproate) to child/adolescent autistic patients. When a medication is used extensively prior to scientific substantiation in controlled clinical trials, the consequences can sometimes be problematic. Neither the side effects nor efficacy of valproate in treating child/adolescent autistic disorders has been definitively established. Of theoretical interest, valproate has possible neuroprotective effects mediated by signal transduction pathways (i.e., protein kinase-c inhibition and bcl-2 activation) which may potentially be beneficial for a neurodevelopmental disorder such as autism. This study is the first double-blind placebo-controlled medication trial of valproate for children and adolescents with autism, and utilizes a 12-week double-blind placebo-controlled parallel design. The study is unique in examining the treatment effects of valproate (DS) versus placebo on global autism severity; aggression, self-injury and impulsivity; affective instability;
Studies 111
repetitive behaviors and social deficits; and functional ability. While our pilot open data evaluating the use of DS for autistic subjects has been encouraging so far (71 percent of autistic subjects were global treatment responders on open DS), a double blind placebo controlled trial with larger sample size and more precise methodology is needed to provide a scientifically sound conclusion about the efficacy, side effects, and effects on functional living skills of this medication in children with autism. This will definitively either support or contradict its widespread use in this understudied and neglected population, and provide a benchmark by which new treatments could be compared. It will also assess the relationship between dose and blood levels and response, potentially identify subgroups particularly responsive to this treatment, and identify which components and associated symptoms are most responsive to change. Website: http://commons.cit.nih.gov/crisp3/CRISP.Generate_Ticket ·
Project Title: Early Recognition and Outcome in Autism Principal Investigator & Institution: Dawson, Geraldine; Professor; University of Washington Seattle, Wa 98195 Timing: Fiscal Year 2000 Summary: There are three aims of this project. The first aim is to demonstrate that autism can be distinghished from mental retardation in infants one year of age. This will be accomplished by observing 1st birthday home videotapes of 75 3-4 year old children later diagnosed with autism, and comparing them to 1st birthday party videotapes obtained from 50 3-4 year children with idiopathic mential retardation and from 75 children with typical development. The second aim is to determine whether variations in early course of development in autism (early vs late onset) are related to individual differences in later symptom expression and brain function. It is believed that approximately 25 percent of children with autism show a pattern of normal development followed by regression in the second or third year of life. Such patterns likely reflect different underlying brain mechanisms in autism and may index subtypes of the disorder. To investigate this possibility, children with early versus later onset of autistic symptoms, as reflected in observations from 1st and 2nd year videotapes, will be compared to determine whether they differ in terms of their patterns of symptom expression and neurocognitive profiles at 3-4 years of age. The third aim is to study more broadly the longitudinal development of children with autism from infancy through early childhood with the goal of identifying key factors related to outcome in autism. Children with autism and the comparison group of children with mental retardation will be followed
112 Autism
longitudinally during the preschool period. Analyses will examine how three primary factors - age of symptom onset, early neurocognitive profile, and intensity of early intervention - are related to outcome by early elementary school age (6-7 years). Website: http://commons.cit.nih.gov/crisp3/CRISP.Generate_Ticket ·
Project Title: Environmental Epidemiology of Autism Principal Investigator & Institution: Hertz-Picciotto, Irva; University of California Davis 1 Shields Ave Davis, Ca 95616 Timing: Fiscal Year 2001; Project Start 0-SEP-2001; Project End 9-SEP-2006 Summary: The causes and contributing factors for autism are poorly understood. Evidence suggests that incidence is increasing, but diagnostic changes & improvements may be playing a role. Both genetic and environmental factors appear to play a role. Autopsy studies demonstrate structural changes in the brain and clinical investigations reveal neurophysiologic differences in information processing in autistic vs. normal children. Members of our team recently demonstrated altered levels of certain neuropeptides at birth in children who later developed autism. The proposed case-control study will be the first large-scale epidemiologic investigation of underlying causes for autism and triggers of regression. This study will capitalize on the strengths of the casecontrol design, which is well suited to examine a broad array of factors for rare conditions that are thought to be multifactorial. Comparisons will be made with both general population controls and mentally retarded children. From California's Department of Developmental Services (DDS) databases and Regional Centers that coordinate services for developmentally disabled persons, we will identify children aged 2 to 5 years, recently diagnosed with autism from two geographic areas in the state. Eligibility will be determined through evaluation by trained professionals using the Autism Diagnostic Interview-Revised and the Autistic Diagnostic Observation Schedule-Generic. A set of general population controls will be matched on gender, age, and community of residence. Another set will be matched to the autistic children with mental retardation, and will consist of children in the DDS database/Regional Center system with mental retardation but not autism. Cognitive and adaptive function will be assessed in all children. Both parents will be interviewed, separately, regarding periconceptional, prenatal, and early childhood exposures and experiences. Interviewers will collect family histories of speech development, social skills, psychological disorders, and behavioral patterns. Blood, urine, and buccal swab specimens will be collected from the index child (case or control), parents, and siblings, and newborn blood spots from the index
Studies 113
child will be obtained from the specimen bank maintained by the State of California. Prenatal clinic, delivery, and pediatric medical records for the index child will be obtained. Specimens will be analyzed by the Analytical Biomarkers Core for mRNA of candidate genes and later for specific genetic polymorphisms. The proposed study will be the first major epidemiologic case-control study to examine autism in relation to a broad array of environmental exposures and endogenous susceptibility factors. Website: http://commons.cit.nih.gov/crisp3/CRISP.Generate_Ticket ·
Project Title: Face Recognition Processes in Autism Principal Investigator & Institution: Joseph, Robert M.; Eunice Kennedy Shriver Center; Univ of Massachusetts Med Sch Worcester 55 Lake Ave N Worcester, Ma 01655 Timing: Fiscal Year 2000; Project Start 1-JUL-1999; Project End 0-JUN2001 Summary: Faces are arguably the most important objects in our social environment, providing the primary means by which we identify one another as well as a vital medium for communication. The proposed study is designed to investigate face recognition abilities and processes in autism. Two primary aims guide this study. Aim 1 is to determine if children with autism are specifically impaired in their ability to encode and recognize unfamiliar human faces (a) relative to non-autistic children and (b) relative to their own ability to process comparably complex nonfacial stimuli. Aim 2 is to provide a direct test of the hypothesis that children with autism rely to an abnormal extent on piecemeal faceprocessing strategies whereby they encode and remember faces primarily in terms of their component parts rather than as wholes. These issues will be addressed by systematically comparing recognition of unfamiliar faces with recognition of a range of comparably complex control stimuli (inverted faces, scrambled faces, houses) using a part-whole methodology (Tanaka and Farah, 1993) which reasons that if faces are encoded holistically, an individual component (e.g., the mouth) of a previously exposed face will be recognized more readily in the context of the whole face than in isolation. Participants will include 30 children with autism, ranging from 8 to 12 years in CA and with nonverbal IQs above 60, and 30 non-autistic children with mental retardation and/or learning disabilities, matched with the autistic participants on CA, nonverbal IQ, and receptive vocabulary. Part- and whole-recognition of normal, upright faces will be compared with part- and whole-recognition of inverted faces, scrambled faces, and houses in three separate tasks using both accuracy and speed of recognition as dependent measures. Given the
114 Autism
importance of face recognition to social functioning, a systematic investigation of this understudied topic can help to provide a clearer picture of the key social-cognitive deficits in autism and their underlying neuropsychology. This research can thus potentially help to refine diagnostic criteria for autism as well as contribute to the formulation of social-cognitive interventions for children with autism. Website: http://commons.cit.nih.gov/crisp3/CRISP.Generate_Ticket ·
Project Title: Genetics of Autism and Other Communication Disorders Principal Investigator & Institution: Gernsbacher, Morton A.; Professor; Psychology; University of Wisconsin Madison 500 Lincoln Dr Madison, Wi 53706 Timing: Fiscal Year 2001; Project Start 1-SEP-2001 Summary: (provided by applicant): The goal of this research project is to advance rapidly the current genetic research on autism. I suggest that the existing results of genetic (i.e., genome screen) studies have been less definitive because of the heterogeneity among persons with autistic spectrum disorders. Even when diagnosed according to strict and consistent criteria (e.g., the Autism Diagnostic Inventory), symptom profiles of persons with autism vary greatly, suggesting variability in etiology. Thus, I propose to identify and validate a putative subtype of autism, which I refer to as "developmental verbal dyspraxia." Developmental verbal dyspraxia (DVD) is a motor-speech programming disorder resulting in difficulty coordinating and sequencing the oralmotor movements necessary to produce and combine speech sounds (phonemes) to form syllables, words, phrases, and sentences. I hypothesize that a sizable minority of minimally or nonverbal persons with autism are characterized by developmental verbal dyspraxia. Support for my hypothesis comes from behavioral, genetic, and neuroanatomical evidence. In ongoing research (in collaboration with Hill Goldsmith) I am identifying and validating a DVD subtype of autism by screening all children with autism (under age 18) in a metropolitan area; identifying the members of this group who are also characterized by DVD; selecting an autism control group of children not characterized by DVD and a typically developing control group; collecting extensive behavioral, medical, and developmental histories of all children in these groups; obtaining neuroanatomical (structural MRI) data; and collecting and storing DNA. The goal of the research training for this fellowship is to construct indices of the DVD subtype from the diagnostic instruments that have been used in the previously conducted genome screens (e.g., the ADI and A-DOS) and apply those indices to the existing screen data to identify candidate gene regions for the autism-DVD subtype.
Studies 115
Website: http://commons.cit.nih.gov/crisp3/CRISP.Generate_Ticket ·
Project Title: Implicit Information Processing in Autism Principal Investigator & Institution: Klinger, Laura G.; Associate Professor; Psychology; University of Alabama in Tuscaloosa Tuscaloosa, Al 35487 Timing: Fiscal Year 2001; Project Start 1-AUG-2001; Project End 0-JUN2004 Summary: This research integrates the expertise of two New Investigators to examine cognitive impairments in autism. Persons with autism show substantial cognitive impairments in a wide array of thinking skills. However, most of the documented cognitive impairments in autism are for skills that normally develop after the symptoms of autism appear. Symptoms of autism appear within the first year of life suggesting that cognitive impairments must also be present during the first year. It is proposed that persons with autism are impaired in implicit learning, an early-developing precursor to many of the impaired latedeveloping cognitive skills that have been documented in autism. Implicit learning is an automatic cognitive process that takes place independently of conscious attempts to learn and in the absence of explicit knowledge of what was learned. Implicit learning plays an important role in both language learning and social understanding, two areas substantially impaired in autism. It is hypothesized that children with autism use explicit, effortful processes to compensate for implicit learning deficits. This explicit approach to understanding social and language information could lead to the repetitive behaviors present in autism. This theory is examined in a series of experiments that utilize rigorous cognitive neuroscience/information-processing methodologies. These experiments establish whether implicit learning impairments are present in persons with autism using a larger sample of individuals who possess a wider range of intellectual abilities than was used in pilot research. Two implicit learning tasks are used to establish the generality of findings. The hypothesis that persons with autism use explicit processes to complete implicit learning tasks is tested by examining the role of individual differences in explicit processing. Finally, this research uses correlational methods to examine whether performance on implicit learning task is related to behavioral symptoms of autism including poor social and language skills and repetitive/ritualistic behaviors. Documentation of this type of cognitive impairment could help to explain some of the behavioral symptoms of autism, could have implications for diagnosis and intervention strategies, and could guide the search for underlying brain dysfunction in autism.
116 Autism
Website: http://commons.cit.nih.gov/crisp3/CRISP.Generate_Ticket ·
Project Title: Molecular Genetics of Autism Principal Investigator & Institution: Cook, Edwin; Yale University New Haven, Ct 06520 Timing: Fiscal Year 2000 Summary: Autism is a severe developmental disorder afflicting about 210 per 10,000 individuals. While twin and family studies support significant gene involvement, the specific mode of genetic inheritance is unknown and multiplicative gene action, genetic heterogeneity, and variable expression of underlying susceptibility genes are probable. Given the unknown and complex mode of genetic inheritance in autism, success in localizing underlying disease genes in autism will require evaluation of hundreds of genetic markers spanning the genome and large sample sizes to obtain sufficient power to find underlying genes. In addition, candidate gene studies based on function or position are complementary strategies in a comprehensive approach to understanding the molecular genetic basis of autism. The goals of this project are to localize disease genes in autism through a systematic genome search and candidate gene analysis. In a multi-site international collaborative effort, 240 families with affected sibling pairs with autism will be collected and genotyped on highly polymorphic markers spanning the human genome at regular, close intervals. The U.S. collaborative group will identify and phenotype 120 families with affected siblings with autism and send blood from the families to U.K. for transformation of cell lines. The U.K.European group of collaborators, through their own funding resources, will collect an additional set of 120 relative pairs and genotyping efforts will be conducted in an independent laboratory facility. Through this international effort susceptibility genes can be identified in approximately 240 pairs. In addition candidate genes will be studied using the transmission/disequilibrium test for serotonergic. dopaminergic. GABAergic and associated disease candidates (tuberculous sclerosis). Linkage disequilibrium studies, conducted in 350 families with only one child with autism and 80 families with a child with Asperger's disorder will allow determination of whether there arc different susceptibility genes involved in simplex autism, multiplex autism, or Asperger's disorder. Once susceptibility genes for autism are identified, their role in the clinical variability in autism and in the expression of putative milder variants in autism, including social functioning deficits, mood, and anxiety disorders may be identified. In addition, identification of the genetic determinants in autism would lay
Studies 117
the groundwork for development of improved treatment interventions targeting the pathophysiology of autism. Website: http://commons.cit.nih.gov/crisp3/CRISP.Generate_Ticket ·
Project Title: Structural and Spectroscopic Brain MRI in Autism Principal Investigator & Institution: Brandt, Micheal E.; University of Texas Hlth Sci Ctr Houston Box 20036 Houston, Tx 77225 Timing: Fiscal Year 2000 Summary: Increasingly, clinical and non-human primate studies suggest that dysfunction in identified neural networks linking the limbic structures and the prefrontal cortex results in behavioral and emotional patterns that resemble autism. Neuroimaging techniques to date have not consistently identified brain abnormalities associated with autism. This likely due to heterogeneity of autistic populations, inadequate control populations and limitations of previous imaging techniques themselves. This project will use technological advances in structural and spectroscopic magnetic resonance imaging (sMRI and 1/H-MRSI and 1/H- MRSI) to investigate abnormalities in identified limbic-prefrontal neural networks and determine their association with autism. Seventytwo children and adolescents with autism aged 7;0 to 18;11 years and a group comparable in age, gender and IQ without autism will receive high resolution sMRI. From the MR images, total and separate brain tissue (white matter/gray matter, cerebrospinal fluid) volume measurements will be performed (a) on the different structures of the limbic regions, i.e. the amygdala and hippocampus and (b) on two regions of the prefrontal cortex, i.e., the orbitofrontal and dorsolateral white/gray matter volume differences in orbitofrontal cortex of all autistic people as compared to control subjects; that volumetric differences in the structures of the MORB/AMYG circuit will correlate more strongly with neuropsychological test indices measuring functions of the amygdala and the orbitofrontal cortex, and clinical and behavioral measures of autistic symptoms (e.g. severity of autism), than with IQ measures; and that the dorsolateral prefrontal-hippocampal (DL/HIPPO) circuit will be more severely affected in low-functioning children and adolescents with autism than in high-functioning children and adolescents with autism and controls. In addition, a subgroup of subjects including 20 young high- functioning children and adolescents persons with autism, age 11; 0 to 18; 11 years and 20 controls matched for age, gender, IQ, and handedness will receive 1/H-MRSI to assess the chemical composition for identified cerebral areas. In addition, all monkeys with infant and adult lesions in defined cerebral structures will be behaviorally tested (Project III) and imaged using the same technique to identify brain regions affected by the early
118 Autism
versus late damage to the amygdala or orbitofrontal cortex. We hypothesize that abnormalities seen in higher-functioning children and adolescents with autism will be localized in the M-ORB/AMYG circuit, and those seen in the DL/HIPPO circuit will be associated with intellectual impairment; abnormalities of NAA reflecting alterations in neuronal integrity of the M-ORB-AMYG in autistic people will more strongly correlate with clinical and behavioral traits of autism as well as with scores on neuropsychological tasks measuring function of the MORB/AMYG circuit (Project I); in monkeys, we hypothesize that an early (infantile) lesion within the M-ORB/AMYG circuit (Project III) will have functional ramifications in other neural circuits (DL/HIPPO) and that the same lesion performed in adulthood will not have the same widespread impact. Website: http://commons.cit.nih.gov/crisp3/CRISP.Generate_Ticket ·
Project Title: The Use of Feedback in Autism Principal Investigator & Institution: Griffith, Elizabeth M.; Psychology; University of Denver Box 101562 Denver, Co 80208 Timing: Fiscal Year 2000; Project Start 1-AUG-2000; Project End 1-JUL2002 Summary: (Adapted from the applicant's abstract): The proposed study investigates the hypothesis that the deficit people with autism show on the Wisconsin Card Sorting Test is driven by an inability to use feedback from other people to motivate correct responding, rather than by the executive dysfunction proposed in the executive function theory of the core deficit in autism. The executive function theory, like other explanations of the cause(s) of autism, does not take into account the potential effects of deficits in other areas of functioning on the tasks used to test it. Indeed, the Wisconsin Card Sorting Test, one of the main tasks used in assessing executive function deficits, requires the test-taker to use verbal feedback delivered by the examiner to guide responding. Given the significant social deficits in autism, this task requirement may in fact underlie the difficulties people with autism have on this and similar executive tasks. Specifically, this study will examine whether the properties of the feedback given in tasks significantly alters the performance of people with autism. Two feedback properties will be manipulated on the Wisconsin Card Sorting Test and a nonverbal paired associates memory task in a 2x2 design: the method of feedback, delivery (by, another person versus by a computer), and the motivational value of the feedback (right/wrong versus giving/taking away a dime). The performance of 40 individuals with autism, ages 8-55 years, will be compared to that of 40 individuals without autism who will be matched
Studies 119
to participants with autism on chronological age, receptive language ability, and gender. It is hypothesized that the performance of the people with autism on the two tasks will improve under the nonsocial feedback delivery conditions and the higher value conditions, but that the manipulation of delivery will have a greater impact on performance. It is further hypothesized that the comparison group will be affected by the value manipulation, but not the method of delivery manipulation. Website: http://commons.cit.nih.gov/crisp3/CRISP.Generate_Ticket
E-Journals: PubMed Central22 PubMed Central (PMC) is a digital archive of life sciences journal literature developed and managed by the National Center for Biotechnology Information (NCBI) at the U.S. National Library of Medicine (NLM).23 Access to this growing archive of e-journals is free and unrestricted.24 To search, go to http://www.pubmedcentral.nih.gov/index.html#search, and type “autism” (or synonyms) into the search box. This search gives you access to full-text articles. The following is a sample of items found for autism in the PubMed Central database: ·
A case-control study of autism and mumps-measles-rubella vaccination using the general practice research database: design and methodology by Liam Smeeth, Andrew J. Hall, Eric Fombonne, Laura C. Rodrigues, Xiangning Huang, and Peter G. Smith; 2001 http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=29106
·
A necdin/MAGE-like gene in the chromosome 15 autism susceptibility region: expression, imprinting, and mapping of the human and mouse orthologues by Thea K. Chibuk, Jocelyn M. Bischof, and Rachel Wevrick; 2001 http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=64493
·
Aminoglycoside antibiotics and autism: a speculative hypothesis by Radmila Manev, and Hari Manev,; 2001 http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=59656
Adapted from the National Library of Medicine: http://www.pubmedcentral.nih.gov/about/intro.html. 23 With PubMed Central, NCBI is taking the lead in preservation and maintenance of open access to electronic literature, just as NLM has done for decades with printed biomedical literature. PubMed Central aims to become a world-class library of the digital age. 24 The value of PubMed Central, in addition to its role as an archive, lies the availability of data from diverse sources stored in a common format in a single repository. Many journals already have online publishing operations, and there is a growing tendency to publish material online only, to the exclusion of print. 22
120 Autism
·
BC families win suit over government payment for expensive autism therapy by Heather Kent; 2000 October 31 http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=80260&ren dertype=external
·
Increased discrimination of "false memories" in autism spectrum disorder by David Q. Beversdorf, Brian W. Smith, Gregory P. Crucian, Jeffrey M. Anderson, Jocelyn M. Keillor, Anna M. Barrett, John D. Hughes, Gretchen J. Felopulos, Margaret L. Bauman, Stephen E. Nadeau, and Kenneth M. Heilman; 2000 July 18 http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=27017
·
Measles, mumps, and rubella vaccination and bowel problems or developmental regression in children with autism: population study by Brent Taylor, Elizabeth Miller, Raghu Lingam, Nick Andrews, Andrea Simmons, and Julia Stowe; 2002 February 16 http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=65532
·
Movement analysis in infancy may be useful for early diagnosis of autism by Philip Teitelbaum, Osnat Teitelbaum, Jennifer Nye, Joshua Fryman, and Ralph G. Maurer; 1998 November 10 http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=25000
·
Mumps, measles, and rubella vaccine and the incidence of autism recorded by general practitioners: a time trend analysis by James A Kaye, Maria del Mar Melero-Montes, and Hershel Jick; 2001 February 24 http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=26561
The National Library of Medicine: PubMed One of the quickest and most comprehensive ways to find academic studies in both English and other languages is to use PubMed, maintained by the National Library of Medicine. The advantage of PubMed over previously mentioned sources is that it covers a greater number of domestic and foreign references. It is also free to the public.25 If the publisher has a Web site that offers full text of its journals, PubMed will provide links to that site, as well as to sites offering other related data. User registration, a subscription fee, or some other type of fee may be required to access the full text of articles in some journals. PubMed was developed by the National Center for Biotechnology Information (NCBI) at the National Library of Medicine (NLM) at the National Institutes of Health (NIH). The PubMed database was developed in conjunction with publishers of biomedical literature as a search tool for accessing literature citations and linking to full-text journal articles at Web sites of participating publishers. Publishers that participate in PubMed supply NLM with their citations electronically prior to or at the time of publication.
25
Studies 121
To generate your own bibliography of studies dealing with autism, simply go to the PubMed Web site at www.ncbi.nlm.nih.gov/pubmed. Type “autism” (or synonyms) into the search box, and click “Go.” The following is the type of output you can expect from PubMed for “autism” (hyperlinks lead to article summaries): ·
The effects of progressive relaxation training on the disruptive behavior of a boy with autism. Author(s): Mullins JL, Christian L. Source: Research in Developmental Disabilities. 2001 NovemberDecember; 22(6): 449-62. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=11768670&dopt=Abstract
·
The link between autism and skills such as engineering, maths, physics and computing: a reply to Jarrold and Routh. Author(s): Wheelwright S, Baron-Cohen S. Source: Autism : the International Journal of Research and Practice. 2001 June; 5(2): 223-7. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=11706868&dopt=Abstract
·
The long-term effects of auditory training on children with autism. Author(s): Bettison S. Source: Journal of Autism and Developmental Disorders. 1996 June; 26(3): 361-74. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=8792266&dopt=Abstract
·
The NAS EarlyBird Programme: autism-specific early intervention for parents. Author(s): Shields J. Source: Prof Care Mother Child. 2000; 10(2): 53-4. No Abstract Available. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=11040767&dopt=Abstract
·
The path to care in autism: is it better now? Author(s): Smith B, Chung MC, Vostanis P. Source: Journal of Autism and Developmental Disorders. 1994 October; 24(5): 551-63. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=7814305&dopt=Abstract
122 Autism
·
Toward a theory of early infantile autism. Author(s): Moore DJ, Shiek DA. Source: Psychol Rev. 1971 September; 78(5): 451-6. No Abstract Available. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=5165835&dopt=Abstract
·
Transdermal secretin for autism - a case report. Author(s): Lamson DW, Plaza SM. Source: Alternative Medicine Review : a Journal of Clinical Therapeutic. 2001 June; 6(3): 311-3. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=11410075&dopt=Abstract
·
Unimodal and crossmodal reactivity in autism: presence of auditory evoked responses and effect of the repetition of auditory stimuli. Author(s): Martineau J, Roux S, Garreau B, Adrien JL, Lelord G. Source: Biological Psychiatry. 1992 June 15; 31(12): 1190-203. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=1391280&dopt=Abstract
·
Occupational therapy with children with pervasive developmental disorders. Author(s): Case-Smith J, Miller H. Source: Am J Occup Ther. 1999 September-October; 53(5): 506-13. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=10500859&dopt=Abstract
·
Pervasive developmental disorders: a 10-year review. Author(s): Tanguay PE. Source: Journal of the American Academy of Child and Adolescent Psychiatry. 2000 September; 39(9): 1079-95. Review. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=10986804&dopt=Abstract
Vocabulary Builder Aberrant: Wandering or deviating from the usual or normal course. [EU] Abortion: 1. the premature expulsion from the uterus of the products of conception - of the embryo, or of a nonviable fetus. The four classic
Studies 123
symptoms, usually present in each type of abortion, are uterine contractions, uterine haemorrhage, softening and dilatation of the cervix, and presentation or expulsion of all or part of the products of conception. 2. premature stoppage of a natural or a pathological process. [EU] Antibiotic: A chemical substance produced by a microorganism which has the capacity, in dilute solutions, to inhibit the growth of or to kill other microorganisms. Antibiotics that are sufficiently nontoxic to the host are used as chemotherapeutic agents in the treatment of infectious diseases of man, animals and plants. [EU] Assay: Determination of the amount of a particular constituent of a mixture, or of the biological or pharmacological potency of a drug. [EU] Autopsy: Postmortem examination of the body. [NIH] Biochemical: Relating to biochemistry; characterized by, produced by, or involving chemical reactions in living organisms. [EU] Buccal: Pertaining to or directed toward the cheek. In dental anatomy, used to refer to the buccal surface of a tooth. [EU] Cerebrospinal: Pertaining to the brain and spinal cord. [EU] Conception: The onset of pregnancy, marked by implantation of the blastocyst; the formation of a viable zygote. [EU] Conduction: The transfer of sound waves, heat, nervous impulses, or electricity. [EU] Contraception: The prevention of conception or impregnation. [EU] Contraceptive: conception. [EU]
An agent that diminishes the likelihood of or prevents
Cortex: The outer layer of an organ or other body structure, as distinguished from the internal substance. [EU] Cranial: Pertaining to the cranium, or to the anterior (in animals) or superior (in humans) end of the body. [EU] Endogenous: Developing or originating within the organisms or arising from causes within the organism. [EU] Extraction: The process or act of pulling or drawing out. [EU] Ganglia: Clusters of multipolar neurons surrounded by a capsule of loosely organized connective tissue located outside the central nervous system. [NIH] Genotype: The genetic constitution of the individual; the characterization of the genes. [NIH] Heterozygote: An individual having different alleles at one or more loci in homologous chromosome segments. [NIH] Hybridization: The genetic process of crossbreeding to produce a hybrid.
124 Autism
Hybrid nucleic acids can be formed by nucleic acid hybridization of DNA and RNA molecules. Protein hybridization allows for hybrid proteins to be formed from polypeptide chains. [NIH] Hyperbilirubinemia: Pathologic process consisting of an abnormal increase in the amount of bilirubin in the circulating blood, which may result in jaundice. [NIH] Idiopathic: Of the nature of an idiopathy; self-originated; of unknown causation. [EU] Interstitial: Pertaining to or situated between parts or in the interspaces of a tissue. [EU] Lesion: Any pathological or traumatic discontinuity of tissue or loss of function of a part. [EU] Leukotrienes: A family of biologically active compounds derived from arachidonic acid by oxidative metabolism through the 5-lipoxygenase pathway. They participate in host defense reactions and pathophysiological conditions such as immediate hypersensitivity and inflammation. They have potent actions on many essential organs and systems, including the cardiovascular, pulmonary, and central nervous system as well as the gastrointestinal tract and the immune system. [NIH] Limbic: Pertaining to a limbus, or margin; forming a border around. [EU] Neonatal: Pertaining to the first four weeks after birth. [EU] Neural: 1. pertaining to a nerve or to the nerves. 2. situated in the region of the spinal axis, as the neutral arch. [EU] Neuroleptic: A term coined to refer to the effects on cognition and behaviour of antipsychotic drugs, which produce a state of apathy, lack of initiative, and limited range of emotion and in psychotic patients cause a reduction in confusion and agitation and normalization of psychomotor activity. [EU] Neuronal: Pertaining to a neuron or neurons (= conducting cells of the nervous system). [EU] Neuropeptides: Peptides released by neurons as intercellular messengers. Many neuropeptides are also hormones released by non-neuronal cells. [NIH] Neurophysiology: The scientific discipline concerned with the physiology of the nervous system. [NIH] Neuropsychology: A branch of psychology which investigates the correlation between experience or behavior and the basic neurophysiological processes. The term neuropsychology stresses the dominant role of the nervous system. It is a more narrowly defined field than physiological psychology or psychophysiology. [NIH]
Studies 125
Neurosciences: The scientific disciplines concerned with the embryology, anatomy, physiology, biochemistry, pharmacology, etc., of the nervous sytem. [NIH] Otolaryngology: A surgical specialty concerned with the study and treatment of disorders of the ear, nose, and throat. [NIH] Parity: The number of offspring a female has borne. It is contrasted with gravidity, which refers to the number of pregnancies, regardless of outcome. [NIH]
Perinatal: Pertaining to or occurring in the period shortly before and after birth; variously defined as beginning with completion of the twentieth to twenty-eighth week of gestation and ending 7 to 28 days after birth. [EU] Phenotype: The outward appearance of the individual. It is the product of interactions between genes and between the genotype and the environment. This includes the killer phenotype, characteristic of yeasts. [NIH] Polymorphic: Occurring in several or many forms; appearing in different forms at different stages of development. [EU] Precursor: Something that precedes. In biological processes, a substance from which another, usually more active or mature substance is formed. In clinical medicine, a sign or symptom that heralds another. [EU] Preeclampsia: A toxaemia of late pregnancy characterized by hypertension, edema, and proteinuria, when convulsions and coma are associated, it is called eclampsia. [EU] Prenatal: Existing or occurring before birth, with reference to the fetus. [EU] Prolapse: 1. the falling down, or sinking, of a part or viscus; procidentia. 2. to undergo such displacement. [EU] Prostaglandins: A group of compounds derived from unsaturated 20carbon fatty acids, primarily arachidonic acid, via the cyclooxygenase pathway. They are extremely potent mediators of a diverse group of physiological processes. [NIH] Proteins: Polymers of amino acids linked by peptide bonds. The specific sequence of amino acids determines the shape and function of the protein. [NIH]
Psychology: The science dealing with the study of mental processes and behavior in man and animals. [NIH] Psychopathology: The study of significant causes and processes in the development of mental illness. [NIH] Receptor: 1. a molecular structure within a cell or on the surface characterized by (1) selective binding of a specific substance and (2) a specific physiologic effect that accompanies the binding, e.g., cell-surface receptors for peptide hormones, neurotransmitters, antigens, complement
126 Autism
fragments, and immunoglobulins and cytoplasmic receptors for steroid hormones. 2. a sensory nerve terminal that responds to stimuli of various kinds. [EU] Somatic: 1. pertaining to or characteristic of the soma or body. 2. pertaining to the body wall in contrast to the viscera. [EU] Symbiosis: The living together of organisms of different species. [NIH] Telemedicine: Delivery of health services via remote telecommunications. This includes interactive consultative and diagnostic services. [NIH] Teratogens: An agent that causes the production of physical defects in the developing embryo. [NIH] Vaginal: 1. of the nature of a sheath; ensheathing. 2. pertaining to the vagina. 3. pertaining to the tunica vaginalis testis. [EU]
Patents 127
CHAPTER 5. PATENTS ON AUTISM Overview You can learn about innovations relating to autism by reading recent patents and patent applications. Patents can be physical innovations (e.g. chemicals, pharmaceuticals, medical equipment) or processes (e.g. treatments or diagnostic procedures). The United States Patent and Trademark Office defines a patent as a grant of a property right to the inventor, issued by the Patent and Trademark Office.26 Patents, therefore, are intellectual property. For the United States, the term of a new patent is 20 years from the date when the patent application was filed. If the inventor wishes to receive economic benefits, it is likely that the invention will become commercially available within 20 years of the initial filing. It is important to understand, therefore, that an inventor’s patent does not indicate that a product or service is or will be commercially available. The patent implies only that the inventor has “the right to exclude others from making, using, offering for sale, or selling” the invention in the United States. While this relates to U.S. patents, similar rules govern foreign patents. In this chapter, we show you how to locate information on patents and their inventors. If you find a patent that is particularly interesting to you, contact the inventor or the assignee for further information.
26Adapted
from The U. S. Patent and Trademark Office: http://www.uspto.gov/web/offices/pac/doc/general/whatis.htm.
128 Autism
Patents on Autism By performing a patent search focusing on autism, you can obtain information such as the title of the invention, the names of the inventor(s), the assignee(s) or the company that owns or controls the patent, a short abstract that summarizes the patent, and a few excerpts from the description of the patent. The abstract of a patent tends to be more technical in nature, while the description is often written for the public. Full patent descriptions contain much more information than is presented here (e.g. claims, references, figures, diagrams, etc.). We will tell you how to obtain this information later in the chapter. The following is an example of the type of information that you can expect to obtain from a patent search on autism: ·
Method of treating obsessive compulsive disorders, somatoform disorders, dissociative disorders, eating disorders, impulse control disorders, and autism Inventor(s): Coffin; Vicki L. (Basking Ridge, NJ) Assignee(s): Schering Corporation (Kenilworth, NJ) Patent Number: 6,410,527 Date filed: March 1, 1999 Abstract: A method for treating obsessive-compulsive disorders, somatoform disorders, dissociative disorders, eating disorders, impulse control disorders, and autism is disclosed. These disorders are treated by administering an effective amount of a D1/D5 antagonist. Excerpt(s): This invention is directed to the treatment of a group of disorders marked by repetitive, intrusive thoughts and/or ritualistic behaviors, i.e., obsessive-compulsive disorder, somatoform disorders, dissociative disorders, eating disorders, impulse control disorders, and autism. ... Autism is a disorder characterized by a preoccupation with one's own self and a severe impairment of the ability to perceive or react to outside stimuli in a normal fashion. Many autistics are incapable of even communicating with others. ... The present invention provides a method for treating a human suffering from obsessive compulsive disorder, a somatoform disorder, a dissociative disorder, an eating disorder, an impulse control disorder, or autism by administering an effective amount of a D1/D5 antagonist. Web site: http://www.delphion.com/details?pn=US06410527__
Patents 129
·
Genetic polymorphisms which are associated with autism spectrum disorders Inventor(s): Rodier; Patricia M (Rochester, NY), Ingram; Jennifer L. (Rochester, NY), Figlewicz; Denise A. (Rochester, NY), Hyman; Susan L. (Rochester, NY), Stodgell; Christopher J. (Rochester, NY) Assignee(s): University of Rochester (Rochester, NY) Patent Number: 6,228,582 Date filed: June 10, 1998 Abstract: A method is provided for screening subjects for genetic markers associated with autism. The method involves isolating a biological sample from a mammal and then testing for the presence of a mutated gene or a product thereof which is associated with autism. Also disclosed are isolated nucleic acids encoding HoxA1 and HoxB1, both of which have a polymorphism that is associated with autism spectrum disorders. Excerpt(s): The present invention relates to a method of screening subjects for genetic markers associated with autism. The invention further relates to isolated nucleic acids having polymorphisms associated with autism, the polypeptide products of those nucleic acids, and antibodies specific to the polypeptides produced by the mutated genes. ... Autism is a behaviorally defined syndrome characterized by impairment of social interaction, deficiency or abnormality of speech development, and limited activities and interest (American Psychiatric Association, 1994). The last category includes such abnormal behaviors as fascination with spinning objects, repetitive stereotypic movements, obsessive interests, and abnormal aversion to change in the environment. Symptoms are present by 30 months of age. The prevalence rate in recent Canadian studies using total ascertainment is over 1/1,000 (Bryson, S. E. et al., J. Child Psychol. Psychiat., 29, 433 (1988)). ... Attempts to identify the cause of the disease have been difficult, in part, because the symptoms do not suggest a brain region or system where injury would result in the diagnostic set of behaviors. Further, the nature of the behaviors included in the criteria preclude an animal model of the diagnostic symptoms and make it difficult to relate much of the experimental literature on brain injuries to the symptoms of autism. Web site: http://www.delphion.com/details?pn=US06228582__
130 Autism
·
Diagnosis of autism and treatment therefor Inventor(s): Shaw; William (Shawnee, KS) Assignee(s): The Children's Mercy Hospital (Kansas City, MO) Patent Number: 5,686,311 Date filed: June 23, 1995 Abstract: A method for diagnosing the likelihood of autism in patients is provided which comprises first obtaining from the patient a sample of body fluid such as urine and analyzing the sample to determine the quantity therein of at least one marker compound selected from the group consisting of citramalic acid, 5-hydroxy-methyl-2-furoic acid, 3oxo-glutaric acid, furan-2,5-dicarboxylic acid, tartaric acid, furancarbonylglycine, arabinose, dihydroxyphenylpropionic acid, carboxycitric acid and phenylcarboxylic acid; if the quantities of one or more of the compounds are abnormally high, as compared with the urine of non-autistic individuals, an ultimate diagnosis of autism is likely. The invention also pertains to a method of treating autistic patients by administration of antifungal drugs, in order to ameliorate the clinical symptoms of autism. Excerpt(s): The present invention is broadly concerned with an improved method to aid in the diagnosis of autism, and a corresponding method of treating this condition in order to ameliorate the symptoms thereof. More particularly, the invention pertains to a diagnosis method wherein a body fluid sample (e.g., urine) is obtained and quantified for the presence of certain marker compounds such as tartaric acid; abnormally high quantities of one or more of the marker compounds is an indication of autism. In a treatment protocol, a patient suffering from autism is given an antifungal drug, which reduces the quantities of marker compounds and ameliorates the symptoms of autism. ... Childhood autism is the most characteristic group of the broader persuasive developmental disorder category of childhood diseases. The cause of autism is unknown except for a small subgroup due to adenylosuccinic aciduria, a defect in purine metabolism. Autism is characterized by a behavioral syndrome often recognized between two and three years of age. The core of the syndrome is a deviant and/or retarded development of cognitive capacities and skills necessary for social relations, communication, fantasy, and symbolic thinking. Almost all autistic children do not reach independence as adults and 75% are deemed mentally retarded. Taurine aspartate, and glutonate are reported to be significantly elevated in the plasma of a significant fraction of autistic persons, and some have metabolic acidosis. Diagnosis of autism presents difficulties in its own right, and a number of modalities have been proposed primarily based
Patents 131
upon psychiatric evaluations. ... A number of different therapies have been attempted in an effort to cure autism or at least lessen the clinical symptoms thereof. Such have included drug therapies as well as psychiatric care and attempted counseling. In general, results of such treatments have been disappointing, and autism remains very difficult to effectively treat, particularly in severe cases. Web site: http://www.delphion.com/details?pn=US05686311__ ·
5-HT.sub.3 receptor antagonists for the treatment of autism Inventor(s): Oakley; Nigel R. (Cambridge, GB2), Coates; Ian H. (Hertford, GB2), North; Peter C. (Royston, GB2), Oxford; Alexander W. (Royston, GB2) Assignee(s): Glaxo Group Limited (London, GB2) Patent Number: 5,225,407 Date filed: September 8, 1992 Abstract: The invention relates to the use of a compound which acts as an antagonist of 5-HT at 5-HT.sub.3 receptors in the treatment of autism or another disorder originating in childhood in which there is mental retardation. Excerpt(s): It has now been found that compounds which act as antagonists of 5-HT at 5-HT.sub.3 receptors may be useful for the treatment of mental disorders which are first manifest in childhood, more particularly autism. This is a severely debilitating condition, characterised by a range of symptoms including mental retardation, self isolation, stereotyped behaviour, language disability, cognitive deficits, sensory-motor integration imbalance, and disturbances of sleep pattern. Such symptoms are usually evident within the first two or three years of life, and frequently persist into adulthood. 5-HT.sub.3 antagonists may also be useful for the treatment of other disorders originating in childhood in which there is mental retardation, such as phenylketonuria (PKU) and Down's syndrome. ... Accordingly the invention provides a method of treatment of a human subject suffering from autism or another disorder originating in childhood in which there is mental retardation, which comprises administering to the subject an effective amount of a compound which acts as an antagonist of 5-HT at 5-HT.sub.3 receptors. ... In a further aspect, the invention provides a pharmaceutical composition which comprises an effective amount of a compound which acts as an antagonist of 5-HT at 5-HT.sub.3 receptors for use in medicine, particularly human medicine, for the treatment of autism or another disorder originating in childhood in which there is mental retardation.
132 Autism
Web site: http://www.delphion.com/details?pn=US05225407__ ·
Method of treating autism Inventor(s): Gruber; Harry E. (San Diego, CA) Assignee(s): The Regents of the University of California (Oakland, CA) Patent Number: 5,008,251 Date filed: August 31, 1989 Abstract: Methods for increasing extracellular concentrations of adenosine for the prophylactic or affirmative treatment of autism involving administering to a patient purine nucleoside and purine nucleoside-related analogs which increase extracellular adenosine concentration. Excerpt(s): It will be appreciated from the foregoing discussion that a technique that would increase extracellular levels of adenosine or adenosine analogs at specific times during a pathologic event, that would increase these compounds without complex side effects, and which would permit increased adenosine levels to be selectively targeted to cells that would benefit most from them would be of considerable therapeutic use. By way of example, such a technique would be especially useful in the prevention of, or response during, an ischemic event, such as heart attack or stroke, or other event involving an undesired, restricted or decreased blood flow, such as atherosclerosis, for adenosine is a vasodilator and prevents the production of superoxide radicals by granulacytes. Such a technique would also be useful in the prophylactic or affirmative treatment of pathologic states involving increased cellular excitation, such as (1) seizures or epilepsy, (2) arrhythmias, and (3) inflammation due to, for example, arthritis, autoimmune disease, Adult Respiratory Distress Syndrome (ARDS), and granulocyte activation by complement from blood contact with artificial membranes as occurs during dialysis or with heart-lung machines. It would further be useful in the treatment of patients who might have chronic low adenosine such as those suffering from autism, cerebral palsy, insomnia and other neuropsychiatric symptoms, including schizophrenia. The compounds useful in the invention, which include AICA riboside, may be used to accomplish these ends. ... Patients suffering from diseases which may be associated with chronic low adenosine, such as insomnia, autism, schizophrenia and cerebral palsy, will also benefit from the use of the invention to increase adenosine concentrations. ... It is anticipated that compounds useful in the invention will be effectively administered in amounts ranging from about 0.1 mg/kg/day to about 500 mg/kg/day,
Patents 133
preferably from about 15 mg/kg/day to about 200 mg/kg/day. That range of dosages should be especially suitable for compounds useful in the invention as prophylactics for the prevention of tissue damage associated with undesired restricted or decreased blood flow. The use of at least about 0.1 mg/kg/day of AICA riboside or AICA ribotide, preferably from about 1.0 mg/kg/day to about 500 mg/kg/day for said prophylaxis and, more preferably, from about 20 mg/kg/day to about 100 mg/kg/day, is further anticipated. Also contemplated for said prophylaxis is the administration of ribavirin or ribavirin monophosphate in an amount of at least about 0.1 mg/kg/day, preferably from about 1.0 mg/kg/day to about 20 mg/kg/day. In the case of treatment of brain diseases, such as stroke, seizures, epilepsy, transient ischemic attack, autism, schizophrenia, cerebral palsy and insomnia, a dosage of more than 200-500 mg/kg/day may be needed because of the blood/brain barrier. The use of brain-directed pro-drugs may, however, enable a lower dosage. Web site: http://www.delphion.com/details?pn=US05008251__ ·
Treating autism and other developmental disorders in children with NMDA receptor antagonists Inventor(s): Zimmerman; Andrew W. (930 Emerald Ave., Ste. 815, Knoxville, TN 37917) Assignee(s): none reported Patent Number: 4,994,467 Date filed: May 31, 1989 Abstract: A method is provided for treating autism and other pervasive developmental disorders in children by the administration of a therapeutically effective amount of a N-methyl-D-aspartate (NMDA) receptor antagonist. The NMDA receptor antagonist is chosen from the group consisting of ketamine and dextromethorphan. Excerpt(s): The present invention relates to methods for the treatment of autism and other pervasive developmental disorders in children by means of the administration of an effective amount of a pharmaceutical. ... Various diagnostic terms, including atypical symbiotic psychosis, childhood psychosis, childhood schizophrenia and others, have been used to describe these disorders in the past. Though some early investigators suggested that these disorders were continuous with adult psychoses (e.g., schizophrenia), substantial research suggests that they are unrelated to those disorders, although autism itself may continue into adulthood. ... The most severe form of pervasive developmental disorder
134 Autism
is the autistic disorder, also known as infantile autism or Kanner's syndrome. Autism is typically evident at birth with early signs that include an absence of social smiling, a failure to seek or anticipate being picked up or a failure in molding to the individual holding the child. The three most reliable characteristics of an autistic individual are (1) an inability to relate to others, (2) specific language deficits and (3) a concern for the maintenance of homeostasis or sameness. A rare subtype of autistic individuals comprises those with extraordinary intellectual capabilities in specific areas (also known as idiot savants). Web site: http://www.delphion.com/details?pn=US04994467__ ·
Pharmaceutical composition for the treatment of infantile autism Inventor(s): Naruse; Hiroshi (Tokyo, JP), Takesada; Masashi (Hyogo, JP), Hayaishi; Osamu (Kyoto, JP), Watanabe; Yasuyoshi (Kyoto, JP) Assignee(s): Suntory Limited (Osaka, JP) Patent Number: 4,778,794 Date filed: June 4, 1986 Abstract: A pharmaceutical composition for the treatment of infantile autism which contains tetrahydrobiopterin or a derivative thereof as a major effective ingredient and 5-hydroxytryptophan and/or L-DOPA as an optional auxiliary effective ingredient is provided. Excerpt(s): The present invention relates to a pharmaceutical composition for the treatment of infantile autism which contains tetrahydrobiopterin or a derivative thereof as an effective ingredient. ... Ever since the finding of the dysfunctioning of the brain in autistic children, autism has been considered to be a disease caused by brain impairment. The etiology of autism has been ascribed to heredity, developmental anomaly or impairment at delivery but no lucid and convincing explanation has yet been put forward. Therefore, the treatments so far tried have been limited to nosotropic ones which involve the administration of such drugs as pimozide, haloperidol, pentoxyfylline and calcium hopantenate in accordance with the specific abnormal behaviors manifested by autistic patients, and no treatment which is truly etiotropic has been known [Acta paedopsychiat., 48, 173-184 (1982); Clin. Eval., 8, 629-673, December, 1980; Shinryo to Shinyaku (Diagnosis and New Drugs), 21, 4, Special Issue, Apr. 1, 1984). ... As mentioned above, however, no etiotropic drug for the treatment of autism has been found and there exists a strong need to develop such a drug. Web site: http://www.delphion.com/details?pn=US04778794__
Patents 135
Patent Applications on Autism As of December 2000, U.S. patent applications are open to public viewing.27 Applications are patent requests which have yet to be granted (the process to achieve a patent can take several years). The following patent applications have been filed since December 2000 relating to autism: ·
Genomeceutical and/or enzymatic composition and method for treating autism Inventor(s): Brudnak, Mark A. ; (Port Washington, WI) Correspondence: Steven J. Adamson, PC; P.O. Box 5997; Portland; OR; 97228; US Patent Application Number: 20020041871 Date filed: June 1, 2001 Abstract: A composition for use in treating autism spectrum disorders. The composition preferably includes a genomeceutical type compound that increases the user's expression of DPPIV or like substances. The genomeceutical compound may include a sugar (such as a milk sugar), glucans, galactose and/or related material. The composition may also include one or more of a protease, peptidase or phytase. The inclusion of phospholipids, disaccharides, lipases and/or related substances in a composition for treating autism spectrum disorders and the function they provide is also disclosed. Excerpt(s): This application claims the benefit of U.S. Provisional Application No. 60/208,800, filed Jun. 1, 2000, and having the same inventor as above and entitled Enzyme Formulation for Treating Autism. ... The present invention relates to treating autism and, more specifically, to treating autism with genomeceutical based treatments. The present invention also includes the use of phytase and like substances and formulations containing one or more of genomeceutical, enzymatic and phytase-like compounds for treating autism. ... Autism may be defined as a condition, usually present from childhood, that is characterized by selfabsorption, a reduced ability to respond to or communicate with the outside world and behavioral dysfunction. An autistic individual may suffer from several maladies with the accumulated symptoms being categorized as autism spectrum disorders, referred to in the field as autism or ASD. Symptoms of autism include stimming, reduced eye contact, perseveration (repeating same activity for long periods), poor
27
This has been a common practice outside the United States prior to December 2000.
136 Autism
communication and social skills and heightened sound sensitivity, amongst others. Web site: http://appft1.uspto.gov/netahtml/PTO/search-bool.html ·
Anticonvulsant derivatives useful in treating autism Inventor(s): Van Kammen, Daniel P. ; (Neshanic Station, NJ) Correspondence: Audley A Ciamporcero Jr; One Johnson & Johnson Plaza; New Brunswick; NJ; 08933-7003; US Patent Application Number: 20020035068 Date filed: January 18, 2000 Abstract: Anticonvulsant derivatives useful in treating autism. Excerpt(s): Autism is observed in a group of disorders called the pervasive developmental disorders (e.g., Autistic Disorder, Rett's Disorder, Asperger's Disorder, Pervasive Developmental Disorder Not Otherwise Specified (Including Atypical Autism). Such disorders are behaviorally defined disorders featuring qualitative impaired social interaction, language, communication and range of interests and activities. As used herein "autism" is used to cover all such disorders. Perseveration, stereotypy, concreteness, affective blunting, failure to develop peer relationships appropriate to developmental level and lack of insight into other person's thinking may be conspicuous along with motor stereotypies. In a proportion of cases, autism is associated with epilepsy, (eg., conditions such as a paroxysmal EEG or even status epilepticus in slow wave sleep). Beaumanoir A, Bureau M, Deonna T, et al. Eds. Continuous spikes and waves during slow wave sleep-electrical status epilepticus during slow wave sleep-Acquired epileptic aphasia and related conditions. John Libbey, 1995. Autistic regression also overlaps with acquired epileptic aphasia (Landau-Kleffner Syndrome). Landau W M, Kleffner F R. Syndrome of Acquired Aphasia with convulsive disorder in children. Neurology 1957;523-530. Therefore, the treatment of underlying seizure disorder has a direct relationship to the treatment of autism. ... Abnormal plasma levels of glutamate may be found in some autistic children Moreno-Fuenmayor H. Borjas L. Arrieta A. Valera V. Socorro-Candanoza L. Plasma excitatory amino acids in autism. Investigacion Clinica.37(2):113-28,1996 Jun. Genes for the three GABA receptor subunits on chromosome 15q have been shown to have aberrations in autism Schroer R J, Phelan M C, Michaelis R C, Crawford E C, Skinner S A, Cuccaro M, Simensen R J, Bishop J, Skinner C, Fender D, Stevensen R E. Autism and mathematically derived aberrations of chromosome 15q. American Journal of Medical Genetics. 76(4):327-36,
Patents 137
Apr. 1, 1998. There are also serotonin abnormalities in autism (Cook E H.Leventhal B L. The serotonin system in autism. Current Opinion in Pediatrics.8(4):348-354,1996 Aug.), which will be treated through GABA and glutamate alterations induced by compounds of formula I. ... Placebo controlled, add on trials of topiramate in adults and children with partial onset seizures have shown a statistically significant reduction of seizure rate greater for Topiramate than placebo. There is also known enhancement of GABA activity in the brain along with reduced glutamate receptor activity. Accordingly, compounds of formula I are useful in the treatment of autism. Web site: http://appft1.uspto.gov/netahtml/PTO/search-bool.html ·
Method of using secretin and compositions made therefrom for the treatment of autism and other neurological, behavioral and immunological disorders Inventor(s): Beck, Victoria ; (Bedford, NH), Rimland, Bernard ; (San Diego, CA) Correspondence: J. Peter Fasse; Fish & Richardson P.C.; 225 Franklin Street; Boston; MA; 02110-2804; US Patent Application Number: 20010049353 Date filed: March 5, 2001 Abstract: Secretin and secretin compositions are used for the treatment of autism and other neurological, behavioral and immunological disorders. The method includes administering an effective amount of secretin, such as Secretin-Ferring, to a patient. In one example, 2 clinical units (CU) of Secretin-Ferring was dissolved in a 7.5 ml solution of sodium chloride and was intravenously injected over 1 minute. In another example, secretin was administered transdermally by applying dimethyl sulfoxide (DMSO) to the patients skin and rubbing about 15 CU of Secretin-Ferring into the DMSO. Other methods and compositions for administering the effective amount of secretin include other transdermal carrier substances, such as gels, lotions, or patches; oral carriers, such as tablets, capsules, or lozenges; inhalation through the nose or mouth (e.g., as an aerosol); suppository forms of secretin and secretin compositions; and using acoustic waves to cause the secretin to penetrate the skin. Excerpt(s): The present invention relates to methods and compositions for the treatment of neurological, behavioral and/or immunological disorders and more particularly, to a new medical use for the natural or synthetic hormone secretin in the treatment of autism and other neurological, behavioral and/or immunological disorders. ... Autism is a
138 Autism
disabling neurological disorder that affects thousands of Americans and encompasses a number of subtypes, with various putative causes and few documented ameliorative treatments. The disorders of the autistic spectrum may be present at birth, or may have later onset, for example, at ages two or three. There are no clear cut biological markers for autism. Diagnosis of the disorder is made by considering the degree to which the child matches the behavioral syndrome, which is characterized by poor communicative abilities, peculiarities in social and cognitive capacities, and maladaptive behavioral patterns. ... A number of different treatments for autism have been developed. Many of the treatments, however, address the symptoms of the disease, rather than the causes. For example, therapies ranging from psychoanalysis to psychopharmacology have been employed in the treatment of autism. Although some clinical symptoms may be lessened by these treatments, modest improvement, at best, has been demonstrated in a minor fraction of the cases. Only a small percentage of autistic persons become able to function as self-sufficient adults. Web site: http://appft1.uspto.gov/netahtml/PTO/search-bool.html ·
Modulation of in vivo glutamine and glycine levels in the treatment of autism Inventor(s): Phillips, John A. III ; (Brentwood, TN), McGrew, Susan G. ; (Nashville, TN) Correspondence: Jenkins & Wilson, Pa; 3100 Tower Blvd; Suite 1400; Durham; NC; 27707; US Patent Application Number: 20010044446 Date filed: December 5, 2000 Abstract: A method of treating autism in a patient. The method includes administering to the patient an effective amount of a glutamine level reducing agent, a glycine level reducing agent or combinations thereof. Representative glutamine level reducing agents are phenylbutyrate and phenylacetate, and a representative glycine level reducing agent is sodium benzoate. Optionally, an N-methyl-D-aspartate receptor antagonist can also be administered to the patient. A representative Nmethyl-D-aspartate receptor antagonist is dextromethorphan. Excerpt(s): The present invention relates to a method for treating autism in patients. More particularly, the present invention relates to a method for modulating in vivo levels of glutamine, glycine or both glutamine or glycine in the treatment of autism. ... Autism is a developmental disorder characterized by social relating and communicating impairments along
Patents 139
with restricted, repetitive or stereotypical behavior and onset by three years of age. A genetic basis for the disorder is suggested by observations such as developmental anomalies in autistic patients, increased incidence of autism in siblings of autistic patients, and a tendency for both of a set of monozygotic twins to be either autistic or not autistic (also called "concordance" for a disorder). However, in 75-80% of autistic individuals, no underlying cause is found for the autism. Previous studies have implicated abnormalities involving neurotransmitters including serotonin, norepinephrine, and histamine in some cases of autism. ... U.S. Pat. No. 4,994,467 issued Feb. 19, 1991 to Zimmerman discloses a method for treating autism in children by administration of therapeutically effective amounts of a N-methyl-D-aspartate (NMDA) receptor antagonist selected from the group consisting of ketamine and dextromethorphan. Web site: http://appft1.uspto.gov/netahtml/PTO/search-bool.html ·
Autism Inventor(s): Dealler, Stephen ; (Burnley, GB) Correspondence: Beyer Weaver & Thomas LLP; P.O. Box 778; Berkeley; CA; 94704-0778; US Patent Application Number: 20010039265 Date filed: February 2, 2001 Abstract: The present invention relates to a method for combatting the symptoms of autism in a subject, said method comprising: administering to the subject a polyanionic polyglycoside (eg a polysulphonated polyglycoside). Excerpt(s): The present invention relates to a method for combatting autism using polyanionic polyglycosides (eg polysulphonated polyglycosides). ... Autism is a childhood psychosis originating in infancy which is characterised by a wide spectrum of psychological symptoms that progress with age (eg lack of responsiveness in social relationships, language abnormality and a need for constant environmental input). It generally appears in children between the ages of two and three years and gives rise to a loss of the development previously gained by the child. The syndrome frequently leads to repeated narrow spectrum diets and psychological difficulties in changing other aspects of life. Epilepsy commonly develops after the age of ten and many drugs are used to control this. The child may develop into an adult that can not be involved normally in society or generate its own income. ... Autism is commonly associated with certain abdominal complaints (such as abdominal pain,
140 Autism
nausea, retching, constipation, inflammatory bowel disease and malabsorption). The abdominal complaints have been looked upon for some time as being separate to the psychological symptoms or caused by them (Wing, 1997, Autism, 1, 13 to 23) and have therefore undergone little investigation. Web site: http://appft1.uspto.gov/netahtml/PTO/search-bool.html
Keeping Current In order to stay informed about patents and patent applications dealing with autism, you can access the U.S. Patent Office archive via the Internet at no cost to you. This archive is available at the following Web address: http://www.uspto.gov/main/patents.htm. Under “Services,” click on “Search Patents.” You will see two broad options: (1) Patent Grants, and (2) Patent Applications. To see a list of granted patents, perform the following steps: Under “Patent Grants,” click “Quick Search.” Then, type “autism” (or synonyms) into the “Term 1” box. After clicking on the search button, scroll down to see the various patents which have been granted to date on autism. You can also use this procedure to view pending patent applications concerning autism. Simply go back to the following Web address: http://www.uspto.gov/main/patents.htm. Under “Services,” click on “Search Patents.” Select “Quick Search” under “Patent Applications.” Then proceed with the steps listed above.
Vocabulary Builder Abdominal: Pertaining to the abdomen. [EU] Acidosis: A pathologic condition resulting from accumulation of acid or depletion of the alkaline reserve (bicarbonate content) in the blood and body tissues, and characterized by an increase in hydrogen ion concentration. [EU] Adenosine: A nucleoside that is composed of adenine and d-ribose. Adenosine or adenosine derivatives play many important biological roles in addition to being components of DNA and RNA. Adenosine itself is a neurotransmitter. [NIH] Aerosol: A solution of a drug which can be atomized into a fine mist for inhalation therapy. [EU] Anticonvulsant: An agent that prevents or relieves convulsions. [EU] Antifungal:
Destructive to fungi, or suppressing their reproduction or
Patents 141
growth; effective against fungal infections. [EU] Arrhythmia: Any variation from the normal rhythm of the heart beat, including sinus arrhythmia, premature beat, heart block, atrial fibrillation, atrial flutter, pulsus alternans, and paroxysmal tachycardia. [EU] Capsules: Hard or soft soluble containers used for the oral administration of medicine. [NIH] Constipation: Infrequent or difficult evacuation of the faeces. [EU] Disaccharides: Sugars composed of two monosaccharides linked by glycoside bonds. [NIH] Enzyme: A protein molecule that catalyses chemical reactions of other substances without itself being destroyed or altered upon completion of the reactions. Enzymes are classified according to the recommendations of the Nomenclature Committee of the International Union of Biochemistry. Each enzyme is assigned a recommended name and an Enzyme Commission (EC) number. They are divided into six main groups; oxidoreductases, transferases, hydrolases, lyases, isomerases, and ligases. [EU] Excitation: An act of irritation or stimulation or of responding to a stimulus; the addition of energy, as the excitation of a molecule by absorption of photons. [EU] Extracellular: Outside a cell or cells. [EU] Gels: Colloids with a solid continuous phase and liquid as the dispersed phase; gels may be unstable when, due to temperature or other cause, the solid phase liquifies; the resulting colloid is called a sol. [NIH] Glucans: Polysaccharides composed of repeating glucose units. They can consist of branched or unbranched chains in any linkages. [NIH] Glutamine: A non-essential amino acid present abundantly throught the body and is involved in many metabolic processes. It is synthesized from glutamic acid and ammonia. It is the principal carrier of nitrogen in the body and is an important energy source for many cells. [NIH] Glycine: A non-essential amino acid. It is found primarily in gelatin and silk fibroin and used therapeutically as a nutrient. It is also a fast inhibitory neurotransmitter. [NIH] Heredity: 1. the genetic transmission of a particular quality or trait from parent to offspring. 2. the genetic constitution of an individual. [EU] Histamine: 1H-Imidazole-4-ethanamine. A depressor amine derived by enzymatic decarboxylation of histidine. It is a powerful stimulant of gastric secretion, a constrictor of bronchial smooth muscle, a vasodilator, and also a centrally acting neurotransmitter. [NIH] Homeostasis: A tendency to stability in the normal body states (internal
142 Autism
environment) of the organism. It is achieved by a system of control mechanisms activated by negative feedback; e.g. a high level of carbon dioxide in extracellular fluid triggers increased pulmonary ventilation, which in turn causes a decrease in carbon dioxide concentration. [EU] Inflammation: A pathological process characterized by injury or destruction of tissues caused by a variety of cytologic and chemical reactions. It is usually manifested by typical signs of pain, heat, redness, swelling, and loss of function. [NIH] Inhalation: The drawing of air or other substances into the lungs. [EU] Insomnia: Inability to sleep; abnormal wakefulness. [EU] Malabsorption: Impaired intestinal absorption of nutrients. [EU] Membrane: A thin layer of tissue which covers a surface, lines a cavity or divides a space or organ. [EU] Nausea: An unpleasant sensation, vaguely referred to the epigastrium and abdomen, and often culminating in vomiting. [EU] Neurotransmitter: Any of a group of substances that are released on excitation from the axon terminal of a presynaptic neuron of the central or peripheral nervous system and travel across the synaptic cleft to either excite or inhibit the target cell. Among the many substances that have the properties of a neurotransmitter are acetylcholine, norepinephrine, epinephrine, dopamine, glycine, y-aminobutyrate, glutamic acid, substance P, enkephalins, endorphins, and serotonin. [EU] Norepinephrine: Precursor of epinephrine that is secreted by the adrenal medulla and is a widespread central and autonomic neurotransmitter. Norepinephrine is the principal transmitter of most postganglionic sympathetic fibers and of the diffuse projection system in the brain arising from the locus ceruleus. It is also found in plants and is used pharmacologically as a sympathomimetic. [NIH] Paroxysmal: Recurring in paroxysms (= spasms or seizures). [EU] Polypeptide: A peptide which on hydrolysis yields more than two amino acids; called tripeptides, tetrapeptides, etc. according to the number of amino acids contained. [EU] Prophylaxis: The prevention of disease; preventive treatment. [EU] Protease: Proteinase (= any enzyme that catalyses the splitting of interior peptide bonds in a protein). [EU] Psychopharmacology: The study of the effects of drugs on mental and behavioral activity. [NIH] Ribavirin: 1-beta-D-Ribofuranosyl-1H-1,2,4-triazole-3-carboxamide. A nucleoside antimetabolite antiviral agent that blocks nucleic acid synthesis
Patents 143
and is used against both RNA and DNA viruses. [NIH] Smiling: A facial expression which may denote feelings of pleasure, affection, amusement, etc. [NIH] Suppository: A medicated mass adapted for introduction into the rectal, vaginal, or urethral orifice of the body, suppository bases are solid at room temperature but melt or dissolve at body temperature. Commonly used bases are cocoa butter, glycerinated gelatin, hydrogenated vegetable oils, polyethylene glycols of various molecular weights, and fatty acid esters of polyethylene glycol. [EU] Taurine: 2-Aminoethanesulfonic acid. A conditionally essential nutrient, important during mammalian development. It is present in milk but is isolated mostly from ox bile and strongly conjugates bile acids. [NIH]
Books 145
CHAPTER 6. BOOKS ON AUTISM Overview This chapter provides bibliographic book references relating to autism. You have many options to locate books on autism. The simplest method is to go to your local bookseller and inquire about titles that they have in stock or can special order for you. Some parents, however, prefer online sources (e.g. www.amazon.com and www.bn.com). In addition to online booksellers, excellent sources for book titles on autism include the Combined Health Information Database and the National Library of Medicine. Once you have found a title that interests you, visit your local public or medical library to see if it is available for loan.
Book Summaries: Federal Agencies The Combined Health Information Database collects various book abstracts from a variety of healthcare institutions and federal agencies. To access these summaries, go to http://chid.nih.gov/detail/detail.html. You will need to use the “Detailed Search” option. To find book summaries, use the drop boxes at the bottom of the search page where “You may refine your search by.” Select the dates and language you prefer. For the format option, select “Monograph/Book.” Now type “autism” (or synonyms) into the “For these words:” box. You will only receive results on books. You should check back periodically with this database which is updated every 3 months. The following is a typical result when searching for books on autism: ·
Do-Watch-Listen-Say: Social and Communication Intervention for Children with Autism Source: Baltimore, MD: Paul H. Brookes Publishing Co. 2000. 430 p.
146 Autism
Contact: Available from Paul H. Brookes Publishing Co. P.O. Box 10624, Baltimore, MD 21285. (800) 638-3775. Fax (410) 337-8539. Website: www.brookespublishing.com. Price: $56.95 plus shipping and handling. ISBN: 1557664536. Summary: Autism is a disorder of social, communicative, and repetitive behaviors. Because impaired social and communication development are the defining symptoms of autism, the assessment and treatment of these skills should be an intervention priority. This text provides intervention guidelines that specifically address social and communication skills, to help guide the thinking of educators, clinicians, and parents who are working with these children. The first two chapters discuss the developmental characteristics of autism. Chapter 3 includes an assessment tool that can be used to establish a comprehensive profile of a child's functional, social, and communication skills. Chapters 4 and 5 describe the continuum of intervention options to build social and communication skills. The final three chapters describe curricular activities to build the skills addressed in the assessment. Each activity sheet corresponds with a subskill listed in the assessment tool's checklists. The chapters list specific behavioral objectives, fun activities, and suggestions to enhance the acquisition and generalization of target skills. The text concludes with a resources section that includes formal assessments, augmentative and alternative communication devices, children's books, computer software, children's music, toys, distributors, web sites, and recommended readings. A subject index is also included. 249 references. ·
Finding Out About Asperger Syndrome, High Functioning Autism and PDD Source: London, England: Jessica Kingsley Publishers. 2000. 46 p. Contact: Available from Taylor and Francis Inc. 325 Chestnut Street, Philadelphia, PA 19106. (215) 625-8900. Fax (215) 625-2940. E-mail:
[email protected]. Price: $9.95 plus shipping and handling. ISBN: 1853028401. Summary: This book is written by an adult with Asperger syndrome (high functioning autism) to help teenagers and young adults who receive a diagnosis of Asperger syndrome. The book first reviews some of the difficulties that young people with Asperger may experience, including in the areas of motor skills, eye contact, being in a group of people, changes, and language. Other topics include thinking differently, using questions to clarify misunderstandings, the role of the five senses, the positive aspects of having Asperger syndrome, learning that one has a disability, and the causes of Asperger syndrome. The author concludes
Books 147
by encouraging people with Asperger syndrome to be proud of themselves and by encouraging people who know someone with Asperger syndrome to respect his or her disability and enjoy the excitement of getting to know somebody who is not like everyone else. ·
Solving Behavior Problems in Autism: Improving Communication with Visual Strategies Source: Troy, MI: QuirkRoberts Publishing. 1999. 251 p. Contact: Available from QuirkRoberts Publishing. P.O. Box 71, Troy, MI 48099-0071. (248) 879-2598. Fax (248) 879-2599. Price: $39.95 plus shipping and handling. ISBN: 0961678623. Summary: This resource book offers practical help for educators and parents who face behavior and self management challenges of students with autism spectrum disorders and other students with moderate to severe communication disorders. In the book, the author identifies a wide variety of behavior situations and problem behaviors that are related to communication or related to understanding, expression, or other learning skills such as establishing attention or memory. The author then suggests a variety of visual support communication strategies to implement to improve positive student participation. The author stresses that the development of visually supported communication strategies has evolved to be a significant source for improving communication in this population. Seventeen chapters cover the link between behavior, communication and visual strategies; how behavior is defined and measured; communication development; visual strategies; evaluating behavior situations; ten keys to becoming a better communication partner; seven critical communication skills to teach; using visual strategies to improve understanding; strategies to help students control their environments; using visual tools to regulate behavior; improving language skills with visual tools; tools to support self management; developing visual tools; addressing special needs, such as very young children, students with limited cognitive ability, and students with multiple disabilities; what to do when things do not go well, including calming techniques; and common causes for unsuccessful behavior management. The book also includes a section of answers to frequently asked questions. The book concludes with a list of footnotes, and a section of references. The book is illustrated with line drawings, graphics, and examples of the visual tools under discussion.
·
Right from the Start: Behavioral Intervention for Young Children with Autism Source: Bethesda, MD: Woodbine House. 1998. 138 p.
148 Autism
Contact: Available from Woodbine House. 6510 Bells Mill Road, Bethesda, MD 20817. (800) 843-7323 or (301) 897-3570. Fax (301) 897-5838. E-mail:
[email protected]. Website: www.woodbinehouse.com. Price: $14.95 plus shipping and handling. ISBN: 189062702X. Summary: This book describes a teaching method known as intensive behavioral intervention (IBI) which can be used to benefit young children with autism and related disorders. Written in an accessible and nontechnical style, the guide begins by discussing applied behavior analysis (ABA), the central component of IBI. Readers learn how ABA can be used to each speech and language, social, motor, and adaptive skills through a system of repetition, reward, and goal adjustment. The authors include a description of a real life family going through the process of understanding their young child's diagnosis and choosing an intensive behavioral intervention program, to bolster the confidence of readers who are making their own evaluations. The authors also discuss what families should consider before choosing any treatment method for their child with autism, and specifically what key elements an IBI program should have. Topics include curriculum, professional roles, parent involvement, inclusion, and the pros and cons of a home based versus center based program. Each chapter includes references and the book includes a glossary of terms commonly used in autism research and education and a subject index. The book includes encouraging words from other parents of children with autism and is illustrated with black and white photographs of children and families. ·
Understanding the Nature of Autism: A Practical Guide Source: San Antonio, TX: Therapy Skill Builders. 1996. 478 p. Contact: Available from Therapy Skill Builders. Order Service Center, P.O. Box 839954, San Antonio, TX 78283-3954. (800) 211-8378; TTY (800) 723-1318; Fax (800) 232-1223. Price: $49.00 plus shipping and handling. ISBN: 0761643796. Summary: This text provides an accessible overview of autism for parents, educators, and others who support those with autism. The book offers twenty-five chapters in six sections. In Part 1, the foundation is established for understanding autism and the impact of autism on learning and thinking. In Part 2, some assessment and evaluation issues are addressed; strategies are provided for solving common assessment problems to elicit the best possible information. In Part 3, the author provides guidelines for making the many decisions that are required for planning educational programs and support systems that will most likely lead to more positive outcomes. In Part 4, the author proposes a foundation for planning all interventions. A set of basic strategies is
Books 149
introduced to address the deficits and problems most commonly associated with autism. In Part 5, the information from previous chapters is integrated and applied to the process for teaching a broad range of new skills. Part 6 serves as a summary of the processes and strategies while addressing potentially serious problems. The book features extensive behavioral examples extrapolated from the author's personal experiences and from parents, service providers, and specialists in autism. The book also features quotations from the stories of five mothers of children with autism. The book includes reproducible forms, a glossary, a resource list, and extensive references. 47 figures. 206 references. ·
Teaching Children with Autism: Strategies to Enhance Communication and Socialization Source: New York, NY: Delmar Publishers Inc. 1995. 315 p. Contact: Available from Thomson Learning. Order Fulfillment, P.O. Box 6904, Florence, KY 41022. (800) 347-7707. Fax (800) 487-8488. Website: www.delmar.com. Price: $38.95 plus shipping and handling. ISBN: 0827362692. Summary: This textbook provides a framework for understanding the developmental differences of children with autism and applying this knowledge to treatment efforts to promote communication and socialization abilities. The reader is guided through a discussion of the child's cognitive and social perspectives, presented strategies to enhance communication and interpersonal relationships, and offered guidelines to assist children with autism through the social maze. The first section presents one theoretical and two autobiographical perspectives on the nature of autism and educational methodology. The second section on communication enhancement presents intervention strategies for children who are nonverbal and verbal. The discussions include considerations for using augmentative communication, the treatment of echolalia, and methods that improve the quality of social communicative interactions. The third section on promoting socialization covers strategies to foster play, social understanding, independence, flexibility, and self control. Assessment and treatment issues are addressed concurrently. The authors discuss informal measures for observing and assessing communicative competence and social behaviors, and specific assessment guidelines are provided in chapter appendices. The text is designed for educators, clinicians, parents, and students in education, communication disorders, and related fields. A subject index concludes the volume.
150 Autism
·
Immunization safety review: Measles-mumps-rubella vaccine and autism Source: Washington, DC: National Academy Press. 2001. 86 pp. Contact: Available from National Academy Press, 2101 Constitution Avenue, N.W., Lockbox 285, Washington, DC 20002. Telephone: (202) 334-3313 or (888) 624-8422 / fax: (202) 334-2451 / e-mail:
[email protected] / Web site: http://www.nap.edu. $25.00, plus shipping and handling. Summary: This report presents an assessment of the evidence regarding a hypothesized causal association between the measles-mumps-rubella (MMR) vaccine and autism; an assessment of the broader significance for society; and conclusions and recommendations based on those assessments. The report contents include an overview of the immunization safety review, the study process, assessing causality, a study of the MMR-autism hypothesis, assessments, arguments, recommendations, and references. The appendices include the January 11, 2001 organizational meeting agenda of the Immunization Safety Review Committee; the March 8, 2001 autism meeting agenda; the Immunization Safety Review Committee biosketches, and a review of additional research needs and opportunities.
·
Siblings of children with autism: A guide for families Source: Bethesda, MD: Woodbine House. 1994. 127 pp. Contact: Available from Woodbine House, 6510 Bells Mill Road, Bethesda, MD 20817. Telephone: (800) 843-7323 or (301) 897-3570 / fax: (301) 897- 5838. $12.95. Summary: This book provides a guide for parents who have children with autism that will help them teach the child's siblings about the condition. It suggests ways to assure that siblings also get the attention they need. The book indicates methods parents can use to meet the special needs of all their children; it offers suggestions for explaining autism to children, getting children to share their thoughts and feelings, and helping them learn to play. It also covers techniques parents can use to find time for their family, their work, and themselves.
·
When snow turns to rain: One family's struggle to solve the riddle of autism Source: Bethesda, MD: Woodbine House. 1993. 216 pp.
Books 151
Contact: Available from Woodbine House, 6510 Bells Mill Road, Bethesda, MD 20817. Telephone: (800) 843-7323 or (301) 897-3570 / fax: (301) 897- 5838. $14.95. Summary: This book relates the author's experiences as he comes to terms with his son's autism. The book traces the author's struggle to accept and understand the effects of the disorder and his efforts to help his child through various treatment and educational programs. ·
Autism: Nature, Diagnosis and Treatment Source: New York, NY: Guilford Press. 1989. 442 p. Contact: Available from Guilford Press. Guilford Publications, Inc., 77 Spring Street, New York, NY 10012. (800) 365-7006. Price: $46.00 plus shipping and handling. ISBN 0898627249. Summary: This text brings readers up-to-date on the intersection of research and practice regarding the nature, diagnosis, and treatment of autism. Seventeen chapters, each written by experts in the field, are presented in two sections: models of the nature of autism, from the perspectives of psychology and biology; and innovative methods for treating and diagnosing autism that are the outgrowth of much of the research presented in the first section. Specific topics covered include the nature of social impairment in autism; arousal, attention, and the socioemotional impairments of individuals with autism; the early development of autistic children; a psycholinguistic perspective on language development in the autistic child; neuroanatomical systems involved in infantile autism; reciprocal subcortical-cortical influences in autism; autism at the interface between sensory and information processing; neurochemical perspectives on infantile autism; genetic influences in autism; enhancing language and communication in autism; motivating language use in autistic children; methodological and theoretical issues in studying peer-directed behavior and autism; a preschool curriculum for children with autism; the diagnosis and treatment of adolescents and adults with autism; and the pharmacological treatment of autistic children. Each chapter includes extensive references, and the volume concludes with a subject index.
·
Autism Spectrum Disorders: A Transactional Developmental Perspective Source: Baltimore, MD: Paul H. Brookes Publishing Co. 2000. 439 p. Contact: Available from Paul H. Brookes Publishing Co. P.O. Box 10624, Baltimore, MD 21285. (800) 638-3775. Fax (410) 337-8539. Website:
152 Autism
www.brookespublishing.com. Price: $39.95 plus shipping and handling. ISBN: 1557664455. Summary: The terms autism spectrum disorders (ASDs) and pervasive developmental disorders (PDDs) currently are used synonymously to refer to a wide spectrum of neurodevelopmental disorders that have three core features: impairments in social interaction, impairments in verbal and nonverbal communication, and restricted and repetitive patterns of behavior. This volume provides a theoretical and research foundation for understanding the nature of the communication and language problems experienced by children with ASD and for guiding decision making in educational programming and, in particular, communication assessment and intervention. The first part (Chapters 2 through 8) examines the developmental context of children and their families and explores the underpinnings of ASDs and how these related to communication and language problems. The second part (Chapters 9 through 15) examines issues pertaining to education and treatment for children with ASD. The volume focuses on the first decade of life, spanning infancy, childhood, and elementary school age. Each chapter, authored by experts in the field, includes references; the volume concludes with author and subject indices. The editors explain that the common bond shared by all of the authors is the understanding that children with ASD and their families are uniquely individual and that there is no single explanation that accounts for the developmental profiles and challenges of all of the children. Thus, there is no single intervention approach of treatment modality that can address the varied needs of all children and their families. ·
Asperger Syndrome Source: New York, NY: Guilford Press. 2000. 484 p. Contact: Available from Guilford Publications. 72 Spring Street, New York, NY 10012. (800) 365-7006. Fax (212) 966-6708. E-mail:
[email protected]. Website: www.guilford.com. Price: $45.00 plus shipping and handling. ISBN: 1572305347. Summary: This comprehensive text introduces Asperger syndrome (AS), noting the ongoing controversy over the definition of Asperger as a distinct entity from other types of autism. The authors caution that the many uncertainties involved in the ongoing research debate of whether or not AS should be seen as a valid condition in its own right has tended to discourage investigators and confused parents and clinicians alike. To address these uncertainties, the text offers 16 chapters that assemble the best possible current guidelines for research and practice. Topics include diagnostic issues in AS, neuropsychological function and the external
Books 153
validity of AS, motor functioning in AS, social language use in AS and high functioning autism, family genetics, neurofunctional models of autistic disorder and AS (use of neuroimaging), the psychopharmacological treatment of higher functioning pervasive developmental disorders (PDD), nonverbal learning disabilities and AS, the borderlands of autism, schizoid personality in childhood and AS, assessment issues in children and adolescents with AS, treatment and intervention guidelines for people with AS, adolescence and adulthood of people with AS, perspectives on the classification of AS, the past and future of research on AS, and parent essays. Each chapter concludes with a lengthy list of references. The text also includes an appendix of useful Internet addresses, an author index, and a subject index. ·
Children with Autism: A Parents' Guide. 2nd ed Source: Bethesda, MD: Woodbine House. 2000. 427 p. Contact: Available from Woodbine House. 6510 Bells Mill Road, Bethesda, MD 20817. (800) 843-7323 or (301) 897-3570. Fax (301) 897-5838. E-mail:
[email protected]. Website: www.woodbinehouse.com. Price: $17.95 plus shipping and handling. ISBN: 1890627046. Summary: Autism is a physical disorder of the brain that causes a lifelong developmental disability. People with autism have three major symptoms: impaired social interaction, impaired communication, and repetitive, stereotypic, or odd patterns of behavior, unusual interests, or responses to the environment. This book is designed for both the new parent coping with a child's recent diagnosis and one who is an experienced advocate for their child. Chapters cover diagnosis, daily life, family life, education, advocacy, adjustment, medical problems and treatments, development, legal rights, and adults with autism. The book also includes a glossary of terms, a reading list, a guide to resources and organizations, a list of contributors, and a subject index. One appendix offers the diagnostic criteria for autistic disorder, for Rett's disorder, for childhood disintegrative disorder, for Asperger's disorder, and for pervasive developmental disorder (from the Diagnostic and Statistical Manual of Mental Disorders, DSM-IV). The book includes extensive quotes from parents of children with autism and from people with autism; family photographs are sprinkled throughout the text.
·
New Way with Autistic and Other Children with Pervasive Developmental Disorders Source: Boston, MA: Language and Cognitive Development Center, Inc. 1992. 32 p.
154 Autism
Contact: Language and Cognitive Development Center. P.O. Box 270, 11 Wyman Street, Boston, MA 02130. (617) 522-5434. Price: $5.00 each. Summary: This booklet discusses the use of the cognitive developmental systems approach for addressing pervasive developmental disorders (PDD) in children. Cognitive developmental (C-D) systems theory assumes that all children are born with a disposition to make contact with, explore, cope with, communicate, and ultimately, represent to themselves and others, the reality they experience. According to C-D systems theory, children with PDD present an impairment in the ability to react to and influence the world. Lacking a clear sense of the body or self in relation to the world, salient stimuli drive them into scattered or stereotypic behavior from which they cannot extricate themselves to establish functional systems. The authors cover how to assess these children, how to aid children to generalize what they learn, how to teach language to children with PDD, and how to deal with asocial behavior. The authors also describe a typical day and curriculum for a child with PDD, who is enrolled at the Language and Cognitive Development Center (LCDC) in Boston, where the C-D systems approach is utilized. 9 figures. 1 table. 53 references. (AA-M).
Book Summaries: Online Booksellers Commercial Internet-based booksellers, such as Amazon.com and Barnes & Noble.com, offer summaries which have been supplied by each title’s publisher. Some summaries also include customer reviews. Your local bookseller may have access to in-house and commercial databases that index all published books (e.g. Books in PrintÒ). The following have been recently listed with online booksellers as relating to autism (sorted alphabetically by title; follow the hyperlink to view more details at Amazon.com): ·
Autism and Autistic-Like Conditions in Mental Retardation by Dirk W. Kraijer; ISBN: 9026514638; http://www.amazon.com/exec/obidos/ASIN/9026514638/icongroupin terna
·
In search of a response by Leida Berg; ISBN: 0913292001; http://www.amazon.com/exec/obidos/ASIN/0913292001/icongroupin terna
·
The Secret Language of Dolphins by Patricia St. John, Patricia St John; ISBN: 0671709798;
Books 155
http://www.amazon.com/exec/obidos/ASIN/0671709798/icongroupin terna ·
Without Reason: A Family Copes With 2 Generations of Autism by Charles Hart; ISBN: 0060161434; http://www.amazon.com/exec/obidos/ASIN/0060161434/icongroupin terna
The National Library of Medicine Book Index The National Library of Medicine at the National Institutes of Health has a massive database of books published on healthcare and biomedicine. Go to the following Internet site, http://locatorplus.gov/, and then select “Search LOCATORplus.” Once you are in the search area, simply type “autism” (or synonyms) into the search box, and select “books only.” From there, results can be sorted by publication date, author, or relevance. The following was recently catalogued by the National Library of Medicine:28 ·
Adults with autism and mental retardation: a life-span perspective. Author: Bengt Åkerström; Year: 2001; Uppsala: S. Academiae Ubsaliensis, 2001; ISBN: 9155449778 http://www.amazon.com/exec/obidos/ASIN/9155449778/icongroupin terna
·
Autism: a holistic approach. Author: Bob Woodward and Marga Hogenboom; [with a foreword by Colwyn Trevarthen]; Year: 2000; Edinburgh: Floris, 2000; ISBN: 0863153119 http://www.amazon.com/exec/obidos/ASIN/0863153119/icongroupin terna
·
Autism: a new understanding!: solving the 'mystery' of autism, Asperger's, and PDD-NOS. Author: Gail Gillingham; Year: 2000; Edmonton, Alta., Canada: Tacit Pub.; c2000; ISBN: 0968786316 http://www.amazon.com/exec/obidos/ASIN/0968786316/icongroupin terna
In addition to LOCATORPlus, in collaboration with authors and publishers, the National Center for Biotechnology Information (NCBI) is adapting biomedical books for the Web. The books may be accessed in two ways: (1) by searching directly using any search term or phrase (in the same way as the bibliographic database PubMed), or (2) by following the links to PubMed abstracts. Each PubMed abstract has a “Books” button that displays a facsimile of the abstract in which some phrases are hypertext links. These phrases are also found in the books available at NCBI. Click on hyperlinked results in the list of books in which the phrase is found. Currently, the majority of the links are between the books and PubMed. In the future, more links will be created between the books and other types of information, such as gene and protein sequences and macromolecular structures. See http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=Books.
28
156 Autism
·
Autism: a sensorimotor approach to management. Author: editor, Ruth A. Huebner; Year: 2001; Gaithersburg, Md.: Aspen Publishers, 2001; ISBN: 0834216450 http://www.amazon.com/exec/obidos/ASIN/0834216450/icongroupin terna
·
Autism and Lovaas treatment: a systematic review of effectiveness evidence. Author: Ken Bassett, Carolyn J. Green, Arminée Kazanjian; Year: 2000; Vancouver: BC Office of Health Technology Assessment, Centre for Health Services and Policy Research, University of British Columbia, c2000; ISBN: 1896256163
·
Autism and post-traumatic stress disorder: ending autistic fixation. Author: by Ken Lenchitz; Year: 2000; Springfield, Ill.: Charles C. Thomas, c2000; ISBN: 0398070962 (cloth) http://www.amazon.com/exec/obidos/ASIN/0398070962/icongroupin terna
·
Autism in history: the case of Hugh Blair of Borgue. Author: Rab Houston and Uta Frith; Year: 2000; Oxford; Malden, MA: Blackwell Publishers, 2000; ISBN: 0631220887 (alk. paper) http://www.amazon.com/exec/obidos/ASIN/0631220887/icongroupin terna
·
Autism, advocates and law enforcement professionals: recognizing and reducing risk situations for people with autism spectrum disorders. Author: Dennis Debbaudt; Year: 2002; London; Philadelphia: Jessica Kingsley Publishers, 2002; ISBN: 1853029807 http://www.amazon.com/exec/obidos/ASIN/1853029807/icongroupin terna
·
Autism--the search for coherence. Author: edited by John Richer and Sheila Coates; Year: 2001; London; Philadelphia: Jessica Kingsley, 2001; ISBN: 1853028886 (pbk.) http://www.amazon.com/exec/obidos/ASIN/1853028886/icongroupin terna
·
Behavioural interventions for preschool children with autism. Author: Lynda McGahan; Year: 2001; Ottawa, Ont.: Canadian Coordinating Office for Health Technology Assessment, [2001]; ISBN: 1894620119 (print)
·
Children with starving brains: a medical treatment guide for autism spectrum disorder. Author: Jaquelyn McCandless; with contributions by Teresa Binstock and Jack Zimmerman; Year: 2002; [Thousand Oaks, Calif.]: Bramble Books, c2002; ISBN: 1883647096 (alk. paper) http://www.amazon.com/exec/obidos/ASIN/1883647096/icongroupin terna
Books 157
·
Clinical practice guideline. Report of the guideline recommendations: autism, pervasive developmental disorders: assessment and intervention for young children (age 0-3 years). Author: sponsored by New York State Department of Health, Early Intervention Progra; Year: 1999; Albany, N.Y.: New York State Dept. of Health, [1999]
·
Comprehensive programs for the treatment of children with autism. Author: ECRI; Year: 2000; Plymouth Meeting, PA: ECRI, c2000
·
Critical appraisal of submitted cost-benefit models of Lovaas early intensive behavioural intervention for autism. Author: Carolyn Green, Ken Bassett and Arminée Kazanjian; Year: 2000; Vancouver, BC: Centre for Health Services and Policy Research, University of British Columbia, 2000
·
Development of autism: perspectives from theory and research. Author: edited by Jacob A. Burack ... [et al.]; Year: 2001; Mahwah, N.J.: Lawrence Erlbaum Associates, Publishers, 2001; ISBN: 0805832459 http://www.amazon.com/exec/obidos/ASIN/0805832459/icongroupin terna
·
Handbook of autism: a guide for parents and professionals. Author: Maureen Aarons and Tessa Gittens; Year: 1999; London; New York: Routledge, 1999; ISBN: 0415160340 http://www.amazon.com/exec/obidos/ASIN/0415160340/icongroupin terna
·
Immunization safety review: measles-mumps-rubella vaccine and autism. Author: Kathleen Stratton ... [et al.], editors; Immunization Safety Review Committee, Board on Health Promotion and Disease Prevention, Institute of Medicine; Year: 2001; Washington, D.C.: National Academy Press, c2001; ISBN: 0309074479 http://www.amazon.com/exec/obidos/ASIN/0309074479/icongroupin terna
·
Learning to live with high functioning autism: a parent's guide for professionals. Author: Mike Stanton; Year: 2000; London; Philadelphia: J. Kingsley Publishers, 2000; ISBN: 1853029157 (pbk.: alk. paper) http://www.amazon.com/exec/obidos/ASIN/1853029157/icongroupin terna
·
Natural medicine guide to autism. Author: Stephanie Marohn; Year: 2002; Charlottesville, VA: Hampton Roads Pub., c2002; ISBN: 1571742883 (alk. paper) http://www.amazon.com/exec/obidos/ASIN/1571742883/icongroupin terna
·
Our journey through high functioning autism and Asperger syndrome: a roadmap. Author: edited by Linda Andron; forewords by Tony
158 Autism
Attwood and Liane Holliday Willey; Year: 2001; London; Philadelphia: Jessica Kingsley Publishers, 2001; ISBN: 1853029475 http://www.amazon.com/exec/obidos/ASIN/1853029475/icongroupin terna ·
Parent's guide to asperger syndrome and high-functioning autism: how to meet the challenges and help your child thrive. Author: Sally Ozonoff, Geraldine Dawson, James McPartland; Year: 2002; New York, NY: Guilford Press, c2002; ISBN: 1572305312 (pbk.: alk. paper) http://www.amazon.com/exec/obidos/ASIN/1572305312/icongroupin terna
·
Picture's worth: PECS and other visual communication strategies in autism. Author: Andy Bondy & Lori Frost; Year: 2002; Bethesda, MD: Woodbine House, 2001; ISBN: 0933149964 http://www.amazon.com/exec/obidos/ASIN/0933149964/icongroupin terna
·
Reconstruction of the sensory world of autism. Author: Olga Bogdashina; Year: 2001; Sheffield: Sheffield Hallam University Press, 2001; ISBN: 0863399304
·
Relationship development intervention with young children: social and emotional development activities for Asperger syndrome, autism, PDD and NLD. Author: Steven E. Gutstein and Rachelle K. Sheely; Year: 2002; London; Philadelphia: Jessica Kingsley Publishers, 2002; ISBN: 1843107147 (pbk.) http://www.amazon.com/exec/obidos/ASIN/1843107147/icongroupin terna
·
Research basis for autism intervention. Author: edited by Eric Schopler ... [et al.]; Year: 2001; New York: Kluwer Academic/Plenum Publishers, c2001; ISBN: 030646585X http://www.amazon.com/exec/obidos/ASIN/030646585X/icongroupi nterna
·
Reweaving the autistic tapestry: autism, Asperger syndrome, and ADHD. Author: Lisa Blakemore-Brown; Year: 2002; London; Philadelphia: Jessica Kingsley, 2002; ISBN: 1853027480 (pbk.) http://www.amazon.com/exec/obidos/ASIN/1853027480/icongroupin terna
·
Source for treatment methodologies in autism. Author: Gail J. Richard; Year: 2000; East Moline, IL: LinguiSystems, c2000; ISBN: 0760603723
·
Stolen child: aspects of autism and Asperger syndrome. Author: by Ann Hewetson; foreword by Susan J. Moreno; Year: 2002; Westport, CT: Bergin; Garvey, 2002; ISBN: 0897898443 (alk. paper)
Books 159
http://www.amazon.com/exec/obidos/ASIN/0897898443/icongroupin terna ·
Understanding and working with the spectrum of autism: an insider's view. Author: Wendy Lawson; foreword by Margot Prior; Year: 2001; London; Philadelphia: Jessica Kingsley, 2001; ISBN: 1853029718 (pbk.) http://www.amazon.com/exec/obidos/ASIN/1853029718/icongroupin terna
·
Understanding Asperger syndrome and high functioning autism. Author: Gary B. Mesibov and Victoria Shea and Lynn W. Adams; Year: 2001; New York: Kluwer Academic/Plenum Publishers, c2001; ISBN: 0306466260 (handbound) http://www.amazon.com/exec/obidos/ASIN/0306466260/icongroupin terna
Chapters on Autism Frequently, autism will be discussed within a book, perhaps within a specific chapter. In order to find chapters that are specifically dealing with autism, an excellent source of abstracts is the Combined Health Information Database. You will need to limit your search to book chapters and autism using the “Detailed Search” option. Go directly to the following hyperlink: http://chid.nih.gov/detail/detail.html. To find book chapters, use the drop boxes at the bottom of the search page where “You may refine your search by.” Select the dates and language you prefer, and the format option “Book Chapter.” By making these selections and typing in “autism” (or synonyms) into the “For these words:” box, you will only receive results on chapters in books. The following is a typical result when searching for book chapters on autism: ·
Diagnosis of Autism Spectrum Disorders in Young Children Source: in Wetherby, A.M. and Prizant, B.M., eds. Autism Spectrum Disorders: A Transactional Developmental Perspective. Baltimore, MD: Paul H. Brookes Publishing Co. 2000. p. 11-30. Contact: Available from Paul H. Brookes Publishing Co. P.O. Box 10624, Baltimore, MD 21285. (800) 638-3775. Fax (410) 337-8539. Website: www.brookespublishing.com. Price: $39.95 plus shipping and handling. ISBN: 1557664455. Summary: This chapter on diagnosis is from a volume that provides a theoretical and research foundation for understanding the nature of the communication and language problems experienced by children with
160 Autism
autism spectrum disorders (ASD). The authors first introduce autism as a spectrum disorder and define some of the terms used in the field. The authors then discuss the importance of a diagnosis, diagnosis in young children, empirical studies of autism in young children, the difficulties encountered in diagnosing very young children, parents as sources of information, observational measures for early diagnosis, clinical and educational implications, and directions for future research. The authors stress that much more is known about the diagnosis of young children with autism now than was known in the late 1980s. Methods are available that provide ways of acquiring structured information from parents and for observing children directly in diagnosis. Measurement of levels of language and nonverbal functioning have been shown to be reliable and valid and to have great importance in interacting with autism specific factors to predict outcome. Conceptualization of how screening and diagnosis fit together is improving, with increased awareness of the need to consider consequences for children and families. 1 figure. 2 tables. 44 references. ·
Joint Attention, Cultural Learning, and Language Acquisition: Implications for Children with Autism Source: in Wetherby, A.M. and Prizant, B.M., eds. Autism Spectrum Disorders: A Transactional Developmental Perspective. Baltimore, MD: Paul H. Brookes Publishing Co. 2000. p. 31-54. Contact: Available from Paul H. Brookes Publishing Co. P.O. Box 10624, Baltimore, MD 21285. (800) 638-3775. Fax (410) 337-8539. Website: www.brookespublishing.com. Price: $39.95 plus shipping and handling. ISBN: 1557664455. Summary: In the social pragmatic view of language development, children acquire linguistic symbols as an integral part of their social interactions with adults, in much the same way that they learn many other cultural conventions. This chapter on joint attention and cultural learning is from a volume that provides a theoretical and research foundation for understanding the nature of the communication and language problems experienced by children with autism spectrum disorders (ASD). The authors spell out this view of language acquisition in more detail, focusing first on how children begin language acquisition via processes of joint attentional interaction, then on how they progress in word learning in the second year of life, and then on the social cognitive skills on which language acquisition depends. Finally, the authors apply this general theoretical approach to the acquisition of language by children with autism. The language difficulties of these children are well known, but the authors believe that these difficulties may be better
Books 161
understood when they are seen in the light of other difficulties these children have with social and communicative activities in general. 103 references. ·
Joint Attention, Social Orienting, and Nonverbal Communication in Autism Source: in Wetherby, A.M. and Prizant, B.M., eds. Autism Spectrum Disorders: A Transactional Developmental Perspective. Baltimore, MD: Paul H. Brookes Publishing Co. 2000. p. 55-77. Contact: Available from Paul H. Brookes Publishing Co. P.O. Box 10624, Baltimore, MD 21285. (800) 638-3775. Fax (410) 337-8539. Website: www.brookespublishing.com. Price: $39.95 plus shipping and handling. ISBN: 1557664455. Summary: A comprehensive model of autism needs to address both linguistic pragmatic difficulties and the very early onset of preverbal sociocommunicative deficits that are characteristic of the syndrome. This chapter on joint attention, social orienting, and nonverbal communication in autism is from a volume that provides a theoretical and research foundation for understanding the nature of the communication and language problems experienced by children with autism spectrum disorders (ASD). The authors focus on two issues; first, the nature of the neurological disturbance that leads to the sociocommunicative disturbance of autism, and second, the functional, or psychological, nature of the neurological disturbance in autism. The authors review the models and theories supporting each of these issues. They note that a collective view of these models gives rise to a consideration of how related neurological processes may serve different functions at different stages in the development of autism. Specific topics covered include theory of mind and sociocommunicative disturbance, executive functions, social orienting, the recovery intervention hypothesis, the pivotal skill hypothesis, and a model of intervention effects. The authors conclude that a consideration of the changing interplay between initial biological insult and subsequent transactions with the environment may be crucial to an understanding of autism. 95 references.
·
Intersubjectivity in Autism: The Roles of Imitation and Executive Function Source: in Wetherby, A.M. and Prizant, B.M., eds. Autism Spectrum Disorders: A Transactional Developmental Perspective. Baltimore, MD: Paul H. Brookes Publishing Co. 2000. p. 79-107.
162 Autism
Contact: Available from Paul H. Brookes Publishing Co. P.O. Box 10624, Baltimore, MD 21285. (800) 638-3775. Fax (410) 337-8539. Website: www.brookespublishing.com. Price: $39.95 plus shipping and handling. ISBN: 1557664455. Summary: In 1991 Rogers and Pennington proposed a developmental model for autism that could account for the earliest symptoms of autism. Their model highlighted several developmental domains that appeared to differentiate people with autism reliably from other clinical groups: imitation, emotional perception and responses, joint attention and communication, theory of mind (ToM), and executive function (EF). This chapter on intersubjectivity in autism is from a volume that provides a theoretical and research foundation for understanding the nature of the communication and language problems experienced by children with autism spectrum disorders (ASD). The authors of this chapter revisit two aspects of the Rogers and Pennington model (imitation and EF), in light of the empirical work that has occurred since the early 1990s. The authors first discuss findings in those areas, then consider what implications those findings have for the original Rogers and Pennington model regarding the development of sociocommunicative aspects of autism. The authors consider the implications for both clinical intervention and future research. The authors conclude that the social cascade can occur, in partial, fragmented ways, for people with autism. Partial improvements in imitation (the child imitating their communication partner) would lead to partial experiences of emotional contagion and moments of affective coordination of self and other. This, in turn, would allow for partial development of intersubjective and intentional awareness, including some aspects of joint attention, empathy, symbolic play, and intentional communication. The authors suggest that the synchrony of movements, voices, and expressions will continue to be impaired in autism, even among high functioning individuals. 109 references. ·
Communication Intervention Issues for Children with Autism Spectrum Disorders Source: in Wetherby, A.M. and Prizant, B.M., eds. Autism Spectrum Disorders: A Transactional Developmental Perspective. Baltimore, MD: Paul H. Brookes Publishing Co. 2000. p. 193-224. Contact: Available from Paul H. Brookes Publishing Co. P.O. Box 10624, Baltimore, MD 21285. (800) 638-3775. Fax (410) 337-8539. Website: www.brookespublishing.com. Price: $39.95 plus shipping and handling. ISBN: 1557664455. Summary: This chapter on communication intervention issues in autism is from a volume that provides a theoretical and research foundation for
Books 163
understanding the nature of the communication and language problems experienced by children with autism spectrum disorders (ASD). The authors of this chapter explore current issues in enhancing language and communication abilities in young children with ASD from a developmental and transactional orientation. First, the essential underpinnings of a developmental, social pragmatic model are described. The contributions of developmental practice to contemporary behavioral methods for assessment and intervention are also noted. The authors contrast developmental social pragmatic models, which are consistent with transactional theory, with traditional behavioral approaches, which rely primarily on discrete trial training conducted outside of social contexts. The authors hope that this comparison will clearly delineate aspects of practice that are seen as contributing to as well as potentially limiting initiated, spontaneous communication. The authors conclude with a discussion of an evolving model, which they refer to as the SCERTS model of intervention, and which focuses on social communication, emotional regulation, and transactional support as the major components and priorities in enhancing communication and related abilities of young children with ASD. 99 references. ·
More Able Children with Autism Spectrum Disorders: Sociocommunicative Challenges and Guidelines for Enhancing Abilities Source: in Wetherby, A.M. and Prizant, B.M., eds. Autism Spectrum Disorders: A Transactional Developmental Perspective. Baltimore, MD: Paul H. Brookes Publishing Co. 2000. p. 225-249. Contact: Available from Paul H. Brookes Publishing Co. P.O. Box 10624, Baltimore, MD 21285. (800) 638-3775. Fax (410) 337-8539. Website: www.brookespublishing.com. Price: $39.95 plus shipping and handling. ISBN: 1557664455. Summary: Some children with autism spectrum disorders (ASDs) function at a seemingly higher level than expected and the subtle nature of their language and sociocommunicative challenges often goes undetected, particularly when masked by language form and content that appear typical or even high level. In education and intervention for these children, this misunderstanding can result in problems being viewed as superficial and isolated, although in reality they are complex and multifaceted. This chapter on these more able children with autism is from a volume that provides a theoretical and research foundation for understanding the nature of the communication and language problems experienced by children with autism spectrum disorders (ASD). The author of this chapter is concerned with redirecting the focus of attention
164 Autism
in addressing the needs of more able children with ASD, so that practitioners are able to make the adjustments and accommodations that not only are appropriate to the children's intervention needs but also lead to increased academic success. The author's premise is that to meet the sociocommunicative needs of more able children with autism, it is necessary for practitioners to widen their focus of attention, that is, to be guided by an expanded research base that, in addition to language, takes into account information processing and interrelated cognitive and social cognitive constructs. The first section focuses on a multidimensional research approach that includes language comprehension, higher level pragmatics, information processing, and the related cognitive and social cognitive constructs of theory of mind (ToM) and executive function (EF). The initial focus on typical development is followed by a discussion of ways in the which the sociocommunicative deficits express themselves in autism and related disorders. The final sections of the chapter address general guidelines for enhancing abilities in more able children, as well as implications for both clinical and educational practice and future research. 1 table. 68 references. ·
Developmental Approach to Difficulties in Relating and Communicating in Autism Spectrum Disorders and Related Syndromes Source: in Wetherby, A.M. and Prizant, B.M., eds. Autism Spectrum Disorders: A Transactional Developmental Perspective. Baltimore, MD: Paul H. Brookes Publishing Co. 2000. p. 279-306. Contact: Available from Paul H. Brookes Publishing Co. P.O. Box 10624, Baltimore, MD 21285. (800) 638-3775. Fax (410) 337-8539. Website: www.brookespublishing.com. Price: $39.95 plus shipping and handling. ISBN: 1557664455. Summary: This chapter on a developmental approach to communication difficulties in autism is from a volume that provides a theoretical and research foundation for understanding the nature of the communication and language problems experienced by children with autism spectrum disorders (ASD). The authors of this chapter stress that in a functional approach, assessments (diagnosis) and intervention (therapy) must include all relevant areas of functioning and must deal with each child and family in terms of their unique profiles of functional limitations. The authors describe their developmental approach, the Developmental, Individual Difference, Relationship Based (DIR) model. The DIR model engages a child at his or her current level of functioning, works with the unique features of his or her nervous system, and utilizes extensive interactive experiences that are part of ongoing relationships to enable
Books 165
him or her to master new capacities. The model considers the relevant areas of functioning and helps with the construction of each child's developmental profile. 1 appendix. 1 figure. 23 references. ·
Complexity of Autism Source: in Quill, K.A. Do-Watch-Listen-Say: Social and Communication Intervention for Children with Autism. Baltimore, MD: Paul H. Brookes Publishing Co. 2000. p. 1-20. Contact: Available from Paul H. Brookes Publishing Co. P.O. Box 10624, Baltimore, MD 21285. (800) 638-3775. Fax (410) 337-8539. Website: www.brookespublishing.com. Price: $56.95 plus shipping and handling. ISBN: 1557664536. Summary: Autism is a disorder of social, communicative, and repetitive behaviors. Because impaired social and communication development are the defining symptoms of autism, the assessment and treatment of these skills should be an intervention priority. This introductory chapter is from a text that provides intervention guidelines that specifically address social and communication skills, to help guide the thinking of educators, clinicians, and parents who are working with these children. The author first introduces a number of children whose cases highlight the diversity of the disorder. The author then discusses the nature of autism; cognition in autism, including issues of attention, information processing, and social cognition; core skills for social and communication development, including nonverbal social communicative interaction and imitation; social development, including solitary play and social play; communication development, including reciprocal communication, the social functions of communication, and conversational discourse; and rituals in autism. The author concludes that although there have been significant gains in understanding the nature of autism, there still is no singular explanation for the disorder. The author emphasizes the need to view autism within the context of typical development, which presupposes that all areas of development interweave to form a complex tapestry. 4 tables.
·
Motor Functioning in Asperger Syndrome Source: in Klin, A.; Volkmar, F.R.; Sparrow, S.S., eds. Asperger Syndrome. New York, NY: Guilford Press. 2000. p. 97-124. Contact: Available from Guilford Publications. 72 Spring Street, New York, NY 10012. (800) 365-7006. Fax (212) 966-6708. E-mail:
[email protected]. Website: www.guilford.com. Price: $45.00 plus shipping and handling. ISBN: 1572305347.
166 Autism
Summary: This chapter on motor functioning in Asperger syndrome (AS) is from a comprehensive text on this autistic spectrum disorder. The author first addresses the usefulness of motor features in the differentiation of behavioral phenotypes with the autistic spectrum. It has been asserted that motor incoordination (clumsiness) might differentiate AS from high functioning autism (defined as more prototypical autism accompanied by near normal IQ). The first section of this chapter expands this argument and provides an updated view, emphasizing the methodological and conceptual limitations of the related literature. The author then argues for a different approach to the investigation of motor functioning in AS and other autistic spectrum disorders. This approach considers a wider range of clearly defined motor behaviors and examines those behaviors across a spectrum of autistic disorders. The author's fundamental recommendation is that investigators adopt a more analytical approach to motor functions in autism. 95 references. ·
Does Asperger Syndrome Aggregate in Families? Source: in Klin, A.; Volkmar, F.R.; Sparrow, S.S., eds. Asperger Syndrome. New York, NY: Guilford Press. 2000. p. 159-171. Contact: Available from Guilford Publications. 72 Spring Street, New York, NY 10012. (800) 365-7006. Fax (212) 966-6708. E-mail:
[email protected]. Website: www.guilford.com. Price: $45.00 plus shipping and handling. ISBN: 1572305347. Summary: This chapter on Asperger syndrome (AS) and its clustering in families is from a comprehensive text on this autistic spectrum disorder. The authors introduce this chapter with a brief discussion of definitions and a review of the need to estimate the population prevalence of AS. The authors then review the studies that address AS from a genetic perspective and conclude by suggesting hypotheses for testing in future research. Topics include the co occurrence in families of autism, Asperger syndrome, and the broader autism phenotype; other disorders reported in AS families, including major affective disorder, selective mutism, and Tourette syndrome; possible genetic mechanisms; and genetic counseling considerations. The authors conclude that although they are scant and weak, the available data suggest that AS and autism may co segregate and may be genetically related to one another. However, well designed family studies of AS and its association with autism and other disorders are sorely needed, both to establish diagnostic boundaries and to determine which disorders co segregate and which are transmitted independently. 1 table. 38 references.
Books 167
·
What's So Special About Asperger Syndrome?: The Need for Further Exploration of the Borderlands of Autism Source: in Klin, A.; Volkmar, F.R.; Sparrow, S.S., eds. Asperger Syndrome. New York, NY: Guilford Press. 2000. p. 254-277. Contact: Available from Guilford Publications. 72 Spring Street, New York, NY 10012. (800) 365-7006. Fax (212) 966-6708. E-mail:
[email protected]. Website: www.guilford.com. Price: $45.00 plus shipping and handling. ISBN: 1572305347. Summary: This chapter on definitions and classification of Asperger syndrome (AS) and autism is from a comprehensive text on AS. The author of this chapter aims to provide a counterbalance to the weight of research that is concerned with whether there is a continuum between AS and autistic disorder. The author argues that, by concentrating on only these two conditions, researchers have created the impression that there is a single continuum, with autistic disorder at one end and AS at the other. This impression has led many people to suppose that AS is the appropriate diagnosis for any child who falls within the autistic spectrum, is of normal intelligence, but who does not meet full criteria for autistic disorder. In the chapter, the author presents evidence against this view. The author argues that there are many children whose deficits resemble mild forms of autism but who do not have the constellation of features characterizing AS. The diagnostic boundaries between pervasive and specific developmental disorders are, according to this view, much less clear cut than the textbooks seems to imply. In addition, questions about the relationship between language disorder and autistic spectrum disorders have been clouded by a failure to draw a distinction between formal knowledge of language structure and ability to use language to communicate effectively. 5 figures. 5 tables. 26 references.
·
Social Language Use in Asperger Syndrome and High-Functioning Autism Source: in Klin, A.; Volkmar, F.R.; Sparrow, S.S., eds. Asperger Syndrome. New York, NY: Guilford Press. 2000. p. 125-155. Contact: Available from Guilford Publications. 72 Spring Street, New York, NY 10012. (800) 365-7006. Fax (212) 966-6708. E-mail:
[email protected]. Website: www.guilford.com. Price: $45.00 plus shipping and handling. ISBN: 1572305347. Summary: This chapter on social language use in Asperger syndrome (AS) and high functioning autism (HFA, defined as more prototypical autism accompanied by near normal IQ) is from a comprehensive text on this autistic spectrum disorder. Impairment in the social use of language
168 Autism
(pragmatics) is a hallmark of both autism and AS. However, assessment of pragmatic skills is complicated due to the multifaceted, context bound nature of pragmatics and difficulty of measuring pragmatic functions in an ecologically valid way using standardized pragmatic measures. In this chapter, the author attempts to demystify the concept of pragmatics and to review the rather scant literature on pragmatic related behavior associated with HFA and AS. The author concludes that success in social communication has an impact on a person's adaptive functioning and overall well being. Although people with autism and AS exhibit pragmatic impairment, they have many strengths that should be recognized. Not all aspects of pragmatic behavior are abnormal all the time. Methods are available for assessing and treating pragmatic disorders for people of all ages. With ongoing research, the increasing understanding of brain function in people with HFA and AS sets the stage for earlier diagnosis and more appropriate intervention. 103 references. ·
Psychopharmacological Treatment of Higher-Functioning Pervasive Developmental Disorders Source: in Klin, A.; Volkmar, F.R.; Sparrow, S.S., eds. Asperger Syndrome. New York, NY: Guilford Press. 2000. p. 210-228. Contact: Available from Guilford Publications. 72 Spring Street, New York, NY 10012. (800) 365-7006. Fax (212) 966-6708. E-mail:
[email protected]. Website: www.guilford.com. Price: $45.00 plus shipping and handling. ISBN: 1572305347. Summary: This chapter on the psychopharmacological treatment of higher functioning pervasive developmental disorders (PDDs) is from a comprehensive text on the autism spectrum disorder, Asperger syndrome (AS). The authors first review the small amount of available literature on the topic, pointing out some methodological and ascertainment limitations. Second, the authors describe a recently conducted naturalistic study on the psychotropic medical use patterns in a sample of over 100 subjects with AS and related conditions, highlighting the schism between available research and usual standards of clinical practice. Finally, the authors set forth recommendations for future research directions. In particular, they underscore the role for consortium wide collaborative efforts for the field, as specifically exemplified in the recently National Institute of Mental Health (NIMH) funded Research Units in Pediatric Psychopharmacology (RUPPs) focused on the study of autism and related conditions. 4 tables. 60 references.
Books 169
·
Schizoid Personality in Childhood and Asperger Syndrome Source: in Klin, A.; Volkmar, F.R.; Sparrow, S.S., eds. Asperger Syndrome. New York, NY: Guilford Press. 2000. p. 278-305. Contact: Available from Guilford Publications. 72 Spring Street, New York, NY 10012. (800) 365-7006. Fax (212) 966-6708. E-mail:
[email protected]. Website: www.guilford.com. Price: $45.00 plus shipping and handling. ISBN: 1572305347. Summary: This chapter on schizoid personality in childhood and Asperger syndrome (AS) is from a comprehensive text on this autistic spectrum disorder. This chapter focuses on the clinical picture of a group of children, seen in child psychiatric practice since the 1960s, who were followed up into adult life. They were diagnosed as having a schizoid personality disorder because they resembled descriptions of this disorder in the psychiatric literature. This group of schizoid young people were, as a group, much less impaired socially both in childhood and adult life, than groups of patients described more recently as having AS. The chapter begins with an account of the childhood picture, followed by a description of two prognostic validation studies. Some changes in diagnostic nomenclature over the years are then discussed, as well as the relationships between schizoid personality in childhood, as the authors have used the term, and pervasive developmental disorders of childhood, including AS, pervasive developmental disorder not otherwise specified (PDD NOS), and multiplex developmental disorder. The chapter then provides results of two records surveys, exploring the association of schizoid personality in childhood with psychiatric morbidity, including schizophrenia, in later life; and with adult criminality. A section on helpful treatment interventions is followed by a discussion of schizoid personality in relation to the justice system. The chapter ends with speculations about the genetic causes of the syndrome, in particular a possible link between schizoid personality traits and childhood autism on the one hand, schizophrenia on the other. 85 references.
170 Autism
Directories In addition to the references and resources discussed earlier in this chapter, a number of directories relating to autism have been published that consolidate information across various sources. These too might be useful in gaining access to additional guidance on autism. The Combined Health Information Database lists the following, which you may wish to consult in your local medical library:29 ·
Brain Connections: Your Source Guide to Information on Brain Diseases and Disorders. 5th ed Source: New York, NY: Dana Alliance for Brain Initiatives. 2000. 49 p. Contact: Available from Dana Press. Charles A. Dana Foundation, 745 Fifth Avenue, Suite 700, New York, NY 10151. Fax (212) 593-7623. Website: www.dana.org. Price: Single copy free. Summary: This guide lists organizations that assist people with a brainrelated disorder or disease as well as those organizations that assist caregivers and health care providers in these areas. The guide lists more than 275 organizations alphabetically by disease or disorder. Listings of particular relevance to communication disorders include: acoustic neuroma, aphasia, ataxia, attention deficit hyperactivity disorder, autism, deafness and hearing loss, disability and rehabilitation, dizziness, dyslexia, dystonia, head injury, learning disabilities, neurofibromatosis, smell and taste (chemosensory) disorders, spasmodic dysphonia, stuttering, tinnitus, Tourette syndrome, and vestibular disorders. Emphasis is placed on organizations that have a national focus, however, many of these groups sponsor local chapters or affiliates and make referrals to local medical professionals and organizations. For each organization listed, the guide notes mailing address, telephone numbers, e-mail and web sites; also provided are symbols which indicate that the organization offers support groups, referrals to doctors, referrals to other sources of information, regional chapters, availability of literature, availability of speakers, and volunteer opportunities. The guide also describes the publishing body, the Dana Alliance for Brain Initiatives,
29 You will need to limit your search to “Directories” and autism using the “Detailed Search” option. Go directly to the following hyperlink: http://chid.nih.gov/detail/detail.html. To find directories, use the drop boxes at the bottom of the search page where “You may refine your search by”. For publication date, select “All Years”, select language and the format option “Directory”. By making these selections and typing in “autism” (or synonyms) into the “For these words:” box, you will only receive results on directories dealing with autism. You should check back periodically with this database as it is updated every three months.
Books 171
and provides a list of ways in which readers can support and further brain research. ·
Parent Resources: Agencies, Organizations, Support Groups Source: in DeFeo, A.B., ed. Parent Articles 2. San Antonio, TX: Communication Skill Builders. 1995. p. 213-234. Contact: Available from Communication Skill Builders. Customer Service, 555 Academic Court, San Antonio, TX 78204-2498. (800) 211-8378; Fax (800) 232-1223. Price: $55.00 plus shipping and handling. Order Number 076-163-0732. Summary: This appendix section is from a parent education skill builders textbook. The appendix lists agencies, organizations, and support groups that parents might want to contact as they work with developing communication skills in and with their child. National information and advocacy groups are listed, including groups for consumer information, education, financial aid, home care, legal assistance, nonoral communication, orthotics and prosthetics, psychiatry, psychology, rare disorders, rehabilitation, residential placement, self-help, severe disabilities, sibling support, social workers, and telephone usage for persons with disabilities. Also listed are national organizations for specific disabilities and conditions, including acoustic neuroma, autism, birth defects, chronic dizziness and balance disorders, cleft palate and craniofacial disorders, developmental disabilities, Down's syndrome, dyslexia, dystonia, genetic conditions, head injuries, hearing impairments, learning disabilities, mental retardation, neurofibromatosis, neurological disorders, stuttering, Tourette syndrome, and voice disorders and laryngectomies. The address and telephone number for each organization are noted.
·
Self-Help Sourcebook: Finding and Forming Mutual Aid Self-Help Groups. 4th ed Source: Denville, NJ: American Self-Help Clearinghouse. 1992. 226 p. Contact: Available from American Self-Help Clearinghouse. Attn: Sourcebook, St. Clares-Riverside Medical Center, 25 Pocono Road, Denville, NJ 07834. Voice (201) 625-7101; TTY (201) 625-9053. Price: $9.00 book rate; $10.00 first class mail. ISBN: 0963432206. Summary: This sourcebook lists self-help groups in a wide variety of topic areas, including addictions and dependencies, bereavement, disabilities, health, mental health, parenting and family, physical and/or emotional abuse, and miscellaneous categories. Topics relevant to deafness and communication disorders include acoustic neuroma,
172 Autism
alternative/augmentative communication, autism, cleft palate and cleft lip, cochlear implants, developmental disabilities, developmentally delayed children, Down syndrome, dystonia, ear anomalies, elective mutism, hearing impairment, inner ear problems, laryngectomy, latedeafened adults, learning disabilities, Meniere's disease, neck-head-oral cancer, parents of children with hearing impairment, speech dysfunction, speech impairments, stuttering, tinnitus, Tourette syndrome, and Usher's syndrome. In addition to basic information about the self-help groups, the sourcebook lists self-help clearinghouses, toll-free helplines, resources for rare disorders, resources for genetic disorders, housing and neighborhood resources and resources for the homeless, how-to ideas for developing self-help groups, and using a home computer for mutual help. The book includes a bibliography and key word index.
General Home References In addition to references for autism, you may want a general home medical guide that spans all aspects of home healthcare. The following list is a recent sample of such guides (sorted alphabetically by title; hyperlinks provide rankings, information, and reviews at Amazon.com): · Adams & Victor’s Principles Of Neurology by Maurice Victor, et al; Hardcover - 1692 pages; 7th edition (December 19, 2000), McGraw-Hill Professional Publishing; ISBN: 0070674973; http://www.amazon.com/exec/obidos/ASIN/0070674973/icongroupinterna · American Academy of Pediatrics Guide to Your Child’s Symptoms : The Official, Complete Home Reference, Birth Through Adolescence by Donald Schiff (Editor), et al; Paperback - 256 pages (January 1997), Villard Books; ISBN: 0375752579; http://www.amazon.com/exec/obidos/ASIN/0375752579/icongroupinterna · The Children’s Hospital Guide to Your Child’s Health and Development by Alan D. Woolf (Editor), et al; Hardcover - 796 pages, 1st edition (January 15, 2001), Perseus Books; ISBN: 073820241X; http://www.amazon.com/exec/obidos/ASIN/073820241X/icongroupinterna
· Clinical Neuroanatomy Made Ridiculously Simple (MedMaster Series, 2000 Edition) by Stephen Goldberg; Paperback: 97 pages; 2nd edition (February 15, 2000), Medmaster; ISBN: 0940780461; http://www.amazon.com/exec/obidos/ASIN/0940780461/icongroupinterna · Helping Your Child in the Hospital: A Practical Guide for Parents by Nancy Keene, Rachel Prentice; Paperback - 176 pages, 3rd edition (April
Books 173
15, 2002), O’Reilly & Associates; ISBN: 0596500114; http://www.amazon.com/exec/obidos/ASIN/0596500114/icongroupinterna · It’s Not a Tumor!: The Patient’s Guide to Common Neurological Problems by Robert Wiedemeyer; Paperback: (January 1996), Boxweed Pub; ISBN: 0964740796; http://www.amazon.com/exec/obidos/ASIN/0964740796/icongroupinterna · Medical Emergencies & Childhood Illnesses: Includes Your Child’s Personal Health Journal (Parent Smart) by Penny A. Shore, William Sears (Contributor); Paperback - 115 pages (February 2002), Parent Kit Corporation; ISBN: 1896833187; http://www.amazon.com/exec/obidos/ASIN/1896833187/icongroupinterna · Neurology for the Non-Neurologist by William J. Weiner (Editor), Christopher G. Goetz (Editor); Paperback (May 1999), Lippincott, Williams & Wilkins Publishers; ISBN: 0781717078; http://www.amazon.com/exec/obidos/ASIN/0781717078/icongroupinterna · Taking Care of Your Child: A Parent’s Guide to Complete Medical Care by Robert H. Pantell, M.D., et al; Paperback - 524 pages, 6th edition (March 5, 2002), Perseus Press; ISBN: 0738206016; http://www.amazon.com/exec/obidos/ASIN/0738206016/icongroupinterna
Vocabulary Builder Accommodation: distances. [EU]
Adjustment, especially that of the eye for various
Ataxia: Failure of muscular coordination; irregularity of muscular action. [EU]
Bereavement: Refers to the whole process of grieving and mourning and is associated with a deep sense of loss and sadness. [NIH] Causal: Pertaining to a cause; directed against a cause. [EU] Causality: The relating of causes to the effects they produce. Causes are termed necessary when they must always precede an effect and sufficient when they initiate or produce an effect. Any of several factors may be associated with the potential disease causation or outcome, including predisposing factors, enabling factors, precipitating factors, reinforcing factors, and risk factors. [NIH] Cochlear: Of or pertaining to the cochlea. [EU] Dizziness: An imprecise term which may refer to a sense of spatial disorientation, motion of the environment, or lightheadedness. [NIH]
174 Autism
Dystonia: Disordered tonicity of muscle. [EU] Laryngectomy: Total or partial excision of the larynx. [NIH] Mutism: Inability or refusal to speak. [EU] Neuroanatomy: Study of the anatomy of the nervous system as a specialty or discipline. [NIH] Psychotropic: Exerting an effect upon the mind; capable of modifying mental activity; usually applied to drugs that effect the mental state. [EU] Spasmodic: Of the nature of a spasm. [EU] Tinnitus: A noise in the ears, as ringing, buzzing, roaring, clicking, etc. Such sounds may at times be heard by others than the patient. [EU] Vestibular: Pertaining to or toward a vestibule. In dental anatomy, used to refer to the tooth surface directed toward the vestibule of the mouth. [EU]
Multimedia 175
CHAPTER 7. MULTIMEDIA ON AUTISM Overview Information on autism can come in a variety of formats. Among multimedia sources, video productions, slides, audiotapes, and computer databases are often available. In this chapter, we show you how to keep current on multimedia sources of information on autism. We start with sources that have been summarized by federal agencies, and then show you how to find bibliographic information catalogued by the National Library of Medicine. If you see an interesting item, visit your local medical library to check on the availability of the title.
Video Recordings Most medical conditions do not have a video dedicated to them. If they do, they are often rather technical in nature. An excellent source of multimedia information on autism is the Combined Health Information Database. You will need to limit your search to “video recording” and “autism” using the “Detailed Search” option. Go directly to the following hyperlink: http://chid.nih.gov/detail/detail.html. To find video productions, use the drop boxes at the bottom of the search page where “You may refine your search by.” Select the dates and language you prefer, and the format option “Videorecording (videotape, videocassette, etc.).” By making these selections and typing “autism” (or synonyms) into the “For these words:” box, you will only receive results on video productions. The following is a typical result when searching for video recordings on autism: ·
Freedom of Speech Source: Verona, WI: Attainment Company, Inc. 1998. (videorecording).
176 Autism
Contact: Available from Attainment Company, Inc. P.O. Box 930160, Verona, WI 53593-0160. (800) 327-4269 or (608) 845-7880. Fax (800) 9423865 or (608) 845-8040. Website: www.attainmentcompany.com. Price: $79.00 plus shipping and handling. Summary: This videotape program is one in a series of five inclusion oriented videos that explore issues affecting youth with disabilities. This program examines the impact that augmentative communication has on the quality of life of two individuals. The first, Adam, is an ambitious, college educated professional. As a child, Adam's inability to speak and his physical limitations caused elementary school personnel to assume he was unfit for public education. His parents sought help and eventually received an augmentative device that changed Adam's life forever. Suddenly, Adam was one of the smartest kids in the class. The second person profiled is Mike, a seven year old boy with autism who does not speak. His parents have concerns about his future but also believe that diligence and new technology can have a huge impact on their son's life. The program is designed for general and special education personnel or parents. ·
Behind the Glass Door: Hannah's Story Source: Virginia Beach, VA: Windborne Productions. 1998. (videorecording). Contact: Available from Fanlight Productions. 4196 Washington Street, Suite 2, Boston, MA 02131. (800) 937-4113 or (617) 469-4999. Fax (617) 4693379. E-mail:
[email protected]. Website: www.fanlight.com. Price: $245.00 to purchase; $50.00 for one day rental; $100.00 for one week rental; plus shipping and handling. Summary: This videotape program follows one family's struggles over a period of five years, as they share their experience with their daughter, Hannah, who has autism. The program offers insight into the stress that families and educators face as they tackle this mysterious disorder, while giving hope and inspiration to parents determined to bring their children out from behind the glass door of autism. Hannah was nearly a year old when her parents began to suspect that something might be wrong and they undertook the beginning of a long odyssey through the maze of physicians, specialists, and hospitals. When Hannah was finally diagnosed with autism, the specialists' grim prediction was that she would probably never speak, but her parents refused to give up. Hannah was two when her family embarked upon an intensive program of therapy, supported by an involved and committed array of teachers and caregivers. Five years later, she has celebrated her seventh birthday and is a first grade student in public school. This program records her
Multimedia 177
amazing progress and is a tribute to the power of hope, love, and determination on the part of all those involved. ·
Breaking the Silence Barrier Source: Princeton, NJ: Films for the Humanities and Sciences. 1996. (videocassette). Contact: Available from Films for the Humanities and Sciences. P.O. Box 2053, Princeton, NJ 08543-2053. (800) 257-5126 or (609) 275-1400. Fax (609) 275-3767. E-mail:
[email protected]. Website: www.films.com. Price: $99.00 plus shipping and handling. Item number BVL6244. Summary: Stereotypes and misconceptions can often create the most daunting obstacles for people with disabilities. This videotape program is one in a series of programs demonstrating how technology is reshaping the lives of people with disabilities and transforming society's attitudes about who they are and what they can do. This videotape program reports on creative technologies that are being used to help people with autism, traumatic brain injuries, and learning and speech disabilities. Temple Grandin, an autistic woman with a Ph.D. in animal science, explains her 'squeeze machine' which uses deep pressure therapy to help ease the hyperacute sensory dysfunction that often accompanies autism. Neurologist Oliver Sacks shares his views on how people with autism can find meaning in their own distinctive way. Also profiled is Bob Williams, who is the first person with a significant speech disability to hold a major Federal office, and several people with learning disabilities and traumatic brain injuries who have improved their lives by using multimedia software programs.
178 Autism
Audio Recordings The Combined Health Information Database contains abstracts on audio productions. To search CHID, go directly to the following hyperlink: http://chid.nih.gov/detail/detail.html. To find audio productions, use the drop boxes at the bottom of the search page where “You may refine your search by.” Select the dates and language you prefer, and the format option “Sound Recordings.” By making these selections and typing “autism” (or synonyms) into the “For these words:” box, you will only receive results on sound recordings (again, most medical conditions do not have results, so do not expect to find many). The following is a typical result when searching for sound recordings on autism: ·
Discovering Abilities Within the Disability of Autism Source: Rockville, MD: American Speech-Language-Hearing Association (ASHA). 1997. (audiocassettes, manual). Contact: Available from American Speech-Language-Hearing Association (ASHA). Product Sales, 10801 Rockville Pike, Rockville, MD 20852. (888) 498-6699. TTY (301) 897-0157. Website: www.asha.org. Price: $38.00 plus shipping and handling. Order number 0112070. Summary: This audiocassette program and accompanying manual present a conference titled, 'Discovering Abilities Within the Disability of Autism.' The workshop was undertaken to clarify an eclectic functional definition of autism for cross-disciplinary programming; to introduce strategies to maximize learning opportunities despite behavioral disruptions; and to examine current intervention models and discuss the decision making process in designing treatment. Specific topics include the Federal IDEA definition and other definitions, diagnostic decision making, medical versus educational labels, behavioral observation, patient care team members, integration of services, behavioral strategies (sensory system differences, behavioral modifications, and nonverbal communication), communication strategies (receptive language comprehension, automatic speech and echolalia, oral motor exercises, and alternative and augmentative communication), and general management strategies. The manual includes reprints of the slides used in the presentation and space for participants to take notes or record questions. The manual also includes some related reprints and materials with which listeners can obtain continuing education credits.
Multimedia 179
Bibliography: Multimedia on Autism The National Library of Medicine is a rich source of information on healthcare-related multimedia productions including slides, computer software, and databases. To access the multimedia database, go to the following Web site: http://locatorplus.gov/. Select “Search LOCATORplus.” Once in the search area, simply type in autism (or synonyms). Then, in the option box provided below the search box, select “Audiovisuals and Computer Files.” From there, you can choose to sort results by publication date, author, or relevance. The following multimedia has been indexed on autism. For more information, follow the hyperlink indicated: ·
Asperger's syndrome: autism and obsessive behavior. Source: a presentation of Films for the Humanities & Sciences; BBC, Education & Training; QED; Year: 1999; Format: Videorecording; Princeton, N.J.: Films for the Humanities; Sciences, c1999
·
Autism: a world apart. Source: written and produced by Karen Cunninghame; Year: 1988; Format: Videorecording; [United States: s.n., 1988]
·
Autism: the child who couldn't play. Source: a presentation of Films for the Humanities & Sciences; produced and distributed by the Canadian Broadcasting Corporation; Year: 1996; Format: Videorecording; Princeton, N.J.: Films for the Humanities; Sciences, c1996
·
Autism and applied behavioral analysis: to find the words. Source: a presentation of Films for the Humanities & Sciences; ABC News; Nightline; Year: 2001; Format: Videorecording; Princeton, N.J.: Films for the Humanities; Sciences, c2001
·
Autism and the new law: resources for treatment, hope for a cure. Source: an Edvantage Media production; Year: 2001; Format: Videorecording; Fair Haven, NJ: Edvantage Media; Cicero, NY: Distributed by Program Development Associates, [2001?]
·
Autism spectrum disorders. Year: 2002; Format: Videorecording; Verona, WI: IEP Resources: Attainment Co., Inc., c2002
·
Autism. Source: [presented by] the University of Texas Medical School at Houston; produced by UT/TV-Houston, the University of Texas Health Science Center at Houston; Year: 1990; Format: Videorecording; [Houston, Tex.: UT/TV], c1990
·
Behind the curtain. Source: [presented by] Filmakers Library, Inc; Year: 1990; Format: Videorecording; [Yorkshire]: Yorkshire Television, c1990
·
Behind the glass door-- Hannah's story. Source: produced by Windeborne Productions; produced in association with Vision TV; Year:
180 Autism
1998; Format: Videorecording; [Ontario?]: Windborne Productions; Boston, MA: Fanlight Productions [distributor], c1998 ·
Brain disorders. Source: a presentation of Films for the Humanities & Sciences; Year: 2000; Format: Videorecording; Princeton, N.J.: Films for the Humanities and Sciences, c2000
·
Breaking the silence barrier. Source: [presented by] FFH, Films for the Humanities & Sciences; Year: 1996; Format: Videorecording; [United States]: Thirteen/WNET; Princeton, N.J.: Films for the Humanities; Sciences, c1996
·
Breakthroughs : how to reach students with autism. Source: Attainment; Year: 1998; Format: Videorecording; Verona, WI: Attainment Co., c1998
·
CARS, the childhood autism rating scale: practice tape in using the CARS. Source: [presented by] Division TEACCH; Year: 1984; Format: Videorecording; Carrboro, NC: Health Sciences Consortium, c1984
·
Childhood autism rating scale : demonstration tape on using the CARS. Source: [presented by] Division TEACCH; Year: 1984; Format: Videorecording; Carrboro, NC: Health Sciences Consortium, c1984
·
Focus on autism and other developmental disabilities. Austin, TX: PRO-ED, Inc., c1996-
·
Impact of disorders and trauma on the social brain. Source: a presentation of Films for the Humanities & Sciences; an Illuminations production for Channel Four; Year: 2000; Format: Videorecording; Princeton, N.J.: Films for the Humanities; Sciences, c2000
·
Infants, children, and brain dysfunction. Source: with John E. Upledger; Year: 1999; Format: Videorecording; Palm Beach Gardens, Fla.: Upledger Institute, [1999]
·
Invisible wall: autism. Source: a presentation of Films for the Humanities & Sciences; Year: 2001; Format: Videorecording; Princeton, N.J.: Films for the Humanities; Sciences, c2001
·
Linking medicine & education for the child with special needs. Source: [presented by] National Professional Resources; Year: 1998; Format: Videorecording; Port Chester, NY: National Professional Resources, c1998
·
Pediatrics. Source: Robin Murphy; Year: 1984; Format: Sound recording; [Santa Fe, N.M.]: R. Murphy, c1984
·
Rage for order. Source: a presentation of Films for the Humanities & Sciences; Rosetta Pictures for BBC; Year: 1998; Format: Videorecording; Princeton, NJ: Films for the Humanities; Sciences, c1998
Year: 9999;
Multimedia 181
·
Refrigerator mothers. Source: ITVS, Independent Television Service; produced by Kartemquin Educational Films; Year: 2002; Format: Videorecording; Boston, MA: Kartemquin Educational Films, c2002
·
Screening and treatment for infantile autism: psychodynamic perspectives. Source: WAIPAD 5th World Congress 1992; Year: 1992; Format: Sound recording; [Oak Brook, Ill.: WAIPAD, 1992?]
·
Teaching social and leisure skills to youth with autism. Source: Indiana University, Developmental Training Center; Year: 1983; Format: Videorecording; Bloomington, In.: Indiana University, Audio-Visual Center, c1983
·
Understanding autism: a biochemical approach? Source: a presentation of Films for the Humanities & Sciences; Year: 2002; Format: Videorecording; Princeton, NJ: Films for the Humanities; Sciences, c2002
·
Understanding autism. Source: a presentation of Films for the Humanities & Sciences; produced with the participation of Saskatchewan Communications Network, produced with the participation of SaskFILM; Heartland Motion Pictures Inc.... [et al; Year: 1996; Format: Videorecording; Princeton, N.J.: Films for the Humanities; Sciences, c1996
·
Understanding autism. Source: produced by Newscart Productions, Inc., in association with Eden II Programs; Year: 1993; Format: Videorecording; Boston, Mass.: Newscart Productions; Eden II Programs, c1993
·
Vaccinations: hidden harm. Source: Films for the Humanities & Sciences; Year: 2000; Format: Videorecording; Princeton, N.J.: Films for the Humanities; Sciences, c2000
Periodicals and News 183
CHAPTER 8. PERIODICALS AND NEWS ON AUTISM Overview Keeping up on the news relating to autism can be challenging. Subscribing to targeted periodicals can be an effective way to stay abreast of recent developments on autism. Periodicals include newsletters, magazines, and academic journals. In this chapter, we suggest a number of news sources and present various periodicals that cover autism beyond and including those which are published by parent associations mentioned earlier. We will first focus on news services, and then on periodicals. News services, press releases, and newsletters generally use more accessible language, so if you do chose to subscribe to one of the more technical periodicals, make sure that it uses language you can easily follow.
News Services & Press Releases Well before articles show up in newsletters or the popular press, they may appear in the form of a press release or a public relations announcement. One of the simplest ways of tracking press releases on autism is to search the news wires. News wires are used by professional journalists, and have existed since the invention of the telegraph. Today, there are several major “wires” that are used by companies, universities, and other organizations to announce new medical breakthroughs. In the following sample of sources, we will briefly describe how to access each service. These services only post recent news intended for public viewing.
184 Autism
PR Newswire Perhaps the broadest of the wires is PR Newswire Association, Inc. To access this archive, simply go to http://www.prnewswire.com. Below the search box, select the option “The last 30 days.” In the search box, type “autism” or synonyms. The search results are shown by order of relevance. When reading these press releases, do not forget that the sponsor of the release may be a company or organization that is trying to sell a particular product or therapy. Their views, therefore, may be biased. The following is typical of press releases that can be found on PR Newswire: ·
Pennsylvania Department Of Education Hosts National Autism Conference Summary: University Park, Centre County, Pa., July 29 /PRNewswire/ -The Pennsylvania Department of Education today kicked off the National Autism Conference and Pennsylvania Autism Institute at Penn State University. "This conference provides a great forum for parents, educators and clinical practitioners to share the latest information about autism and the best ways to help children succeed," Secretary Charles Zogby said. "By better understanding autism and how to treat it, we can better help our children learn and grow." The five-day conference features more than 60 sessions on topics related to autism spectrum disorders, including national research, assessment, effective intervention and service-delivery models. Speakers include educators, clinical practitioners, educational consultants, psychologists, therapists and parents from across the nation. The Department of Education's Bureau of Special Education is the conference host, in collaboration with the Penn State College of Education; Penn State Continuing Education; the Outreach Office of Statewide Programs; the Pennsylvania Department of Public Welfare; and the Pennsylvania Training and Technical Assistance Network.
Reuters The Reuters’ Medical News database can be very useful in exploring news archives relating to autism. While some of the listed articles are free to view, others can be purchased for a nominal fee. To access this archive, go to
Periodicals and News 185
http://www.reutershealth.com/frame2/arch.html and search by “autism” (or synonyms). The following was recently listed in this archive for autism: ·
Diet changes may ease autism symptoms: study Source: Reuters Health eLine Date: June 13, 2001 http://www.reuters.gov/archive/2001/06/13/eline/links/20010613elin 020.html
·
Metal metabolism may play role in autism Source: Reuters Health eLine Date: May 11, 2001 http://www.reuters.gov/archive/2001/05/11/eline/links/20010511elin 025.html
·
Abnormal metal metabolism revisited in children with autism Source: Reuters Medical News Date: May 11, 2001 http://www.reuters.gov/archive/2001/05/11/professional/links/20010 511clin002.html
·
Hormone does not improve autism, study shows Source: Reuters Health eLine Date: May 07, 2001 http://www.reuters.gov/archive/2001/05/07/eline/links/20010507elin 003.html
·
Low maternal dopamine ß-hydroxylase activity a risk factor for autism in offspring Source: Reuters Medical News Date: April 27, 2001 http://www.reuters.gov/archive/2001/04/27/professional/links/20010 427epid005.html
·
Doctors find early-warning indicator for autism Source: Reuters Health eLine Date: April 25, 2001 http://www.reuters.gov/archive/2001/04/25/eline/links/20010425elin 031.html
·
Federal panel: No link between MMR shot and autism Source: Reuters Health eLine Date: April 24, 2001 http://www.reuters.gov/archive/2001/04/24/eline/links/20010424elin 029.html
186 Autism
·
Dietary changes may help some with autism Source: Reuters Health eLine Date: April 05, 2001 http://www.reuters.gov/archive/2001/04/05/eline/links/20010405elin 029.html
·
Autism 'epidemic' based on data misinterpretation Source: Reuters Health eLine Date: February 08, 2001 http://www.reuters.gov/archive/2001/02/06/eline/links/20010206elin 006.html
·
Can autism be diagnosed in infants? Source: Reuters Health eLine Date: November 09, 2000 http://www.reuters.gov/archive/2000/11/09/eline/links/20001109elin 014.html
·
Brain malformation linked to social problems in autism Source: Reuters Health eLine Date: October 10, 2000 http://www.reuters.gov/archive/2000/10/10/eline/links/20001010elin 013.html
·
US experts urge autism screening for all young children Source: Reuters Health eLine Date: August 21, 2000 http://www.reuters.gov/archive/2000/08/21/eline/links/20000821elin 010.html
·
Families coping with autism need more services, support Source: Reuters Health eLine Date: August 10, 2000 http://www.reuters.gov/archive/2000/08/10/eline/links/20000810elin 012.html
·
Checklist helps identify autism in toddlers Source: Reuters Health eLine Date: June 28, 2000 http://www.reuters.gov/archive/2000/06/28/eline/links/20000628elin 004.html
·
Screening tool can identify autism at 18 months of age Source: Reuters Medical News Date: May 31, 2000 http://www.reuters.gov/archive/2000/05/31/professional/links/20000 531clin002.html
Periodicals and News 187
·
Four brain chemicals linked to autism, retardation Source: Reuters Health eLine Date: May 05, 2000 http://www.reuters.gov/archive/2000/05/05/eline/links/20000505elin 021.html
·
Autism: Seeing faces in a different light Source: Reuters Health eLine Date: April 27, 2000 http://www.reuters.gov/archive/2000/04/27/eline/links/20000427elin 010.html
·
House panel orders check into autism - vaccine link Source: Reuters Health eLine Date: April 07, 2000 http://www.reuters.gov/archive/2000/04/07/eline/links/20000407elin 025.html
·
Experts call for earlier autism screening Source: Reuters Health eLine Date: December 23, 1999 http://www.reuters.gov/archive/1999/12/23/eline/links/19991223elin 009.html
·
Secretin infusion provides no benefit in autism Source: Reuters Medical News Date: December 09, 1999 http://www.reuters.gov/archive/1999/12/09/professional/links/19991 209clin006.html
·
No gastrointestinal disorder link to autism-study Source: Reuters Health eLine Date: August 23, 2002 http://www.reuters.gov/archive/2002/08/23/eline/links/20020823elin 006.html
·
Brain may grow too fast, too early in autism Source: Reuters Health eLine Date: July 22, 2002 http://www.reuters.gov/archive/2002/07/22/eline/links/20020722elin 011.html
·
Autism may result from intrauterine growth restriction, fetal distress Source: Reuters Medical News Date: July 18, 2002 http://www.reuters.gov/archive/2002/07/18/professional/links/20020 718epid004.html
188 Autism
·
Smoking during pregnancy linked to autism Source: Reuters Health eLine Date: July 03, 2002 http://www.reuters.gov/archive/2002/07/03/eline/links/20020703elin 008.html
·
Often possible to detect autism cause: scientists Source: Reuters Health eLine Date: March 14, 2002 http://www.reuters.gov/archive/2002/03/14/eline/links/20020314elin 008.html
·
Abnormalities seen in brains of people with autism Source: Reuters Health eLine Date: December 24, 2001 http://www.reuters.gov/archive/2001/12/24/eline/links/20011224elin 010.html
·
Scientists: No link between autism, MMR vaccine Source: Reuters Health eLine Date: December 13, 2001 http://www.reuters.gov/archive/2001/12/13/eline/links/20011213elin 017.html
·
Autism link to MMR vaccination in UK again dismissed Source: Reuters Industry Breifing Date: December 12, 2001 http://www.reuters.gov/archive/2001/12/12/business/links/20011212 publ002.html
·
One dose of secretin doesn't ease autism symptoms Source: Reuters Health eLine Date: November 29, 2001 http://www.reuters.gov/archive/2001/11/29/eline/links/20011129elin 019.html
·
Single dose of secretin fails to alleviate symptoms of autism Source: Reuters Industry Breifing Date: November 28, 2001 http://www.reuters.gov/archive/2001/11/28/business/links/20011128 drgd001.html
·
Gene disorder brain growths may not predict autism Source: Reuters Health eLine Date: October 08, 2001 http://www.reuters.gov/archive/2001/10/08/eline/links/20011008elin 006.html
Periodicals and News 189
·
MMR shot not linked to 'regressive' autism: study Source: Reuters Health eLine Date: October 01, 2001 http://www.reuters.gov/archive/2001/10/01/eline/links/20011001elin 013.html
·
New genetic links to autism identified Source: Reuters Medical News Date: August 23, 2001 http://www.reuters.gov/archive/2001/08/23/professional/links/20010 823scie003.html
·
Scientists home in on sites for 'autism genes' Source: Reuters Health eLine Date: August 21, 2001 http://www.reuters.gov/archive/2001/08/21/eline/links/20010821elin 031.html
·
UK scientists on track of autism genes Source: Reuters Health eLine Date: August 06, 2001 http://www.reuters.gov/archive/2001/08/06/eline/links/20010806elin 027.html
·
Intensive, early education said best for autism Source: Reuters Health eLine Date: July 12, 2001 http://www.reuters.gov/archive/2001/07/12/eline/links/20010712elin 001.html
·
Autism-spectrum disorders more common in UK than previously reported Source: Reuters Medical News Date: June 26, 2001 http://www.reuters.gov/archive/2001/06/26/professional/links/20010 626epid001.html
·
Autism may be more common than once thought: study Source: Reuters Health eLine Date: June 26, 2001 http://www.reuters.gov/archive/2001/06/26/eline/links/20010626elin 007.html
190 Autism
·
Repligen extends phase II trial for autism drug Source: Reuters Industry Breifing Date: June 19, 2001 http://www.reuters.gov/archive/2001/06/19/business/links/20010619 drgd002.html
·
National Academy of Sciences panel urges early screening, treatment for autism Source: Reuters Medical News Date: June 15, 2001 http://www.reuters.gov/archive/2001/06/15/professional/links/20010 615plcy001.html
·
Chromosomes 13, 7 appear to be associated with autism Source: Reuters Medical News Date: December 09, 1999 http://www.reuters.gov/archive/1999/12/09/professional/links/19991 209scie002.html
·
Study a step towards isolating autism genes Source: Reuters Health eLine Date: December 06, 1999 http://www.reuters.gov/archive/1999/12/06/eline/links/19991206elin 007.html
·
Brain structure abnormalities seen in autism patients Source: Reuters Health eLine Date: July 16, 1999 http://www.reuters.gov/archive/1999/07/16/eline/links/19990716elin 013.html
·
Autism treatment model has positive effect in school setting Source: Reuters Medical News Date: July 12, 1999 http://www.reuters.gov/archive/1999/07/12/professional/links/19990 712clin011.html
·
Autism program helps patients, classmates Source: Reuters Health eLine Date: July 09, 1999 http://www.reuters.gov/archive/1999/07/09/eline/links/19990709elin 013.html
Periodicals and News 191
·
Possible link between immune disorders, autism Source: Reuters Health eLine Date: June 22, 1999 http://www.reuters.gov/archive/1999/06/22/eline/links/19990622elin 005.html
·
Casein peptide appears to cause behavioral disorders similar to autism, schizophrenia in rats Source: Reuters Medical News Date: March 30, 1999 http://www.reuters.gov/archive/1999/03/30/professional/links/19990 330scie002.html
·
Repligen licenses exclusive rights to potential autism treatment Source: Reuters Medical News Date: March 11, 1999 http://www.reuters.gov/archive/1999/03/11/professional/links/19990 311inds001.html
·
No Link Found Between MMR Vaccine And Bowel Disease, Autism Source: Reuters Medical News Date: May 04, 1998 http://www.reuters.gov/archive/1998/05/04/professional/links/19980 504clin016.html
·
UK Panel Says MMR Vaccine Not Linked Bowel Disease, Autism Source: Reuters Medical News Date: March 25, 1998 http://www.reuters.gov/archive/1998/03/25/professional/links/19980 325publ003.html The NIH
Within MEDLINEplus, the NIH has made an agreement with the New York Times Syndicate, the AP News Service, and Reuters to deliver news that can be browsed by the public. Search news releases at http://www.nlm.nih.gov/medlineplus/alphanews_a.html. MEDLINEplus allows you to browse across an alphabetical index. Or you can search by date at http://www.nlm.nih.gov/medlineplus/newsbydate.html. Often, news items are indexed by MEDLINEplus within their search engine. The following was recently indexed as relating to autism: ·
People with Autism Lack Self-consciousness: Study http://www.nlm.nih.gov/medlineplus/news/fullstory_8911.html
192 Autism
Business Wire Business Wire is similar to PR Newswire. To access this archive, simply go to http://www.businesswire.com. You can scan the news by industry category or company name.
Internet Wire Internet Wire is more focused on technology than the other wires. To access this site, go to http://www.internetwire.com and use the “Search Archive” option. Type in “autism” (or synonyms). As this service is oriented to technology, you may wish to search for press releases covering diagnostic procedures or tests that you may have read about.
Search Engines Free-to-view news can also be found in the news section of your favorite search engines (see the health news page at Yahoo: http://dir.yahoo.com/Health/News_and_Media/, or use this Web site’s general news search page http://news.yahoo.com/. Type in “autism” (or synonyms). If you know the name of a company that is relevant to autism, you can go to any stock trading Web site (such as www.etrade.com) and search for the company name there. News items across various news sources are reported on indicated hyperlinks. BBC Covering news from a more European perspective, the British Broadcasting Corporation (BBC) allows the public free access to their news archive located at http://www.bbc.co.uk/. Search by “autism” (or synonyms).
Newsletter Articles If you choose not to subscribe to a newsletter, you can nevertheless find references to newsletter articles. We recommend that you use the Combined Health Information Database, while limiting your search criteria to “newsletter articles.” Again, you will need to use the “Detailed Search” option. Go directly to the following hyperlink:
Periodicals and News 193
http://chid.nih.gov/detail/detail.html. Go to the bottom of the search page where “You may refine your search by.” Select the dates and language that you prefer. For the format option, select “Newsletter Article.” By making these selections, and typing in “autism” (or synonyms) into the “For these words:” box, you will only receive results on newsletter articles. You should check back periodically with this database as it is updated every 3 months. The following is a typical result when searching for newsletter articles on autism: ·
Autism-Part I Source: Harvard Mental Health Letter. 17(12): 1-4. June 2001. Contact: Available from Harvard Mental Health Letter. P.O. Box 428448, Palm Coast, FL 32142-0448. (800) 829-5379. Website: www.health.harvard.edu/newsletters. Summary: This health newsletter article presents information about autism, a disorder characterized by a peculiar emotional and cognitive isolation and detachment. Autistic children can be identified by their apparent inability to form human relationships, abnormal or absent speech, and an unusually limited range of activities and interests. The article first reviews the symptoms and language development of children with autism, then discusses Asperger's disorder, genetic and environmental causes of autism, autism and the brain, and the role of a missing 'theory of mind'. The author reports that language develops slowly and in an odd way in children with autism. Some children do not speak at all; others are unintelligible even though they occasionally produce correctly formed words or even sentences. They may have trouble distinguishing pronouns, often saying 'you' for 'I.' They may echo the speech of others or speak tonelessly in repetitive phrases, but they cannot sustain even a simple conversation. The vast majority of autistic persons have intellectual limitations associated with a seriously impaired capacity for adaptive behavior and cannot attain the social responsibility and personal independence appropriate to their age, as children or as adults. On the other hand (or at the other end of the spectrum of autism), children with Asperger disorder usually have normal or even high verbal intelligence and considerable curiosity about their environment. They are often capable of doing good schoolwork and, as adults, satisfactory work. But they suffer from serious social and emotional deficiencies: limited and fixed interests, a tendency to repetition in their speech and actions, and difficulty in understanding emotional subtleties and social cues. 4 references.
194 Autism
·
Landau-Kleffner Syndrome Source: T.A.L.K. Taking Action Against Language Disorders in Kids. 3(3): 2-7. Fall 1994. Contact: Available from Taking Action Against Language Disorders in Kids (TALK). 22980 Donna Lane, Bend, OR 97701. (503) 389-0004. Summary: This newsletter article focuses on Landau-Kleffner Syndrome (LKS), a rare condition in which children first lose the ability to understand others, and then lose their ability to speak. The abilities of children with LKS may fluctuate, with periods of remission followed by deterioration. While losing the ability to speak, they can often read and write, and can learn sign language. This article describes the symptoms of LKS and then discusses behavioral problems; the similarities betweeb LKS and autism; hearing tests and other diagnostic tests used; the etiology of LKS; and a comparison of LKS to aphasia. An accompanying article, reprinted from the Philadelphia Enquirer newspaper, describes one family's experiences with LKS in their child.
Academic Periodicals covering Autism Academic periodicals can be a highly technical yet valuable source of information on autism. We have compiled the following list of periodicals known to publish articles relating to autism and which are currently indexed within the National Library of Medicine’s PubMed database (follow hyperlinks to view more information, summaries, etc., for each). In addition to these sources, to keep current on articles written on autism published by any of the periodicals listed below, you can simply follow the hyperlink indicated or go to the following Web site: www.ncbi.nlm.nih.gov/pubmed. Type the periodical’s name into the search box to find the latest studies published. If you want complete details about the historical contents of a periodical, you can also visit http://www.ncbi.nlm.nih.gov/entrez/jrbrowser.cgi. Here, type in the name of the journal or its abbreviation, and you will receive an index of published articles. At http://locatorplus.gov/ you can retrieve more indexing information on medical periodicals (e.g. the name of the publisher). Select the button “Search LOCATORplus.” Then type in the name of the journal and select the advanced search option “Journal Title Search.” The following is a sample of periodicals which publish articles on autism:
Periodicals and News 195
·
American Journal of Mental Retardation: Ajmr. (Am J Ment Retard) http://www.ncbi.nlm.nih.gov/entrez/jrbrowser.cgi?field=0®exp=A merican+Journal+of+Mental+Retardation+:+Ajmr&dispmax=20&dispsta rt=0
·
Archives of General Psychiatry. (Arch Gen Psychiatry) http://www.ncbi.nlm.nih.gov/entrez/jrbrowser.cgi?field=0®exp=Ar chives+of+General+Psychiatry&dispmax=20&dispstart=0
·
Autism : the International Journal of Research and Practice. (Autism) http://www.ncbi.nlm.nih.gov/entrez/jrbrowser.cgi?field=0®exp=A utism+:+the+International+Journal+of+Research+and+Practice&dispmax =20&dispstart=0
·
Behavioral Science. (Behav Sci) http://www.ncbi.nlm.nih.gov/entrez/jrbrowser.cgi?field=0®exp=Be havioral+Science&dispmax=20&dispstart=0
·
Biological Psychiatry. (Biol Psychiatry) http://www.ncbi.nlm.nih.gov/entrez/jrbrowser.cgi?field=0®exp=Bi ological+Psychiatry&dispmax=20&dispstart=0
·
Brain & Development. (Brain Dev) http://www.ncbi.nlm.nih.gov/entrez/jrbrowser.cgi?field=0®exp=Br ain+&+Development&dispmax=20&dispstart=0
·
Brain and Language. (Brain Lang) http://www.ncbi.nlm.nih.gov/entrez/jrbrowser.cgi?field=0®exp=Br ain+and+Language&dispmax=20&dispstart=0
·
Clinical Neurophysiology: Official Journal of the International Federation of Clinical Neurophysiology. (Clin Neurophysiol) http://www.ncbi.nlm.nih.gov/entrez/jrbrowser.cgi?field=0®exp=Cli nical+Neurophysiology+:+Official+Journal+of+the+International+Federa tion+of+Clinical+Neurophysiology&dispmax=20&dispstart=0
·
Development and Psychopathology. (Dev Psychopathol) http://www.ncbi.nlm.nih.gov/entrez/jrbrowser.cgi?field=0®exp=De velopment+and+Psychopathology&dispmax=20&dispstart=0
196 Autism
·
European Child & Adolescent Psychiatry. (Eur Child Adolesc Psychiatry) http://www.ncbi.nlm.nih.gov/entrez/jrbrowser.cgi?field=0®exp=Eu ropean+Child+&+Adolescent+Psychiatry&dispmax=20&dispstart=0
·
Journal of Autism and Developmental Disorders. (J Autism Dev Disord) http://www.ncbi.nlm.nih.gov/entrez/jrbrowser.cgi?field=0®exp=Jo urnal+of+Autism+and+Developmental+Disorders&dispmax=20&dispsta rt=0
·
Journal of Child Psychology and Psychiatry, and Allied Disciplines. (J Child Psychol Psychiatry) http://www.ncbi.nlm.nih.gov/entrez/jrbrowser.cgi?field=0®exp=Jo urnal+of+Child+Psychology+and+Psychiatry,+and+Allied+Disciplines& dispmax=20&dispstart=0
·
Journal of Pediatric Health Care : Official Publication of National Association of Pediatric Nurse Associates & Practitioners. (J Pediatr Health Care) http://www.ncbi.nlm.nih.gov/entrez/jrbrowser.cgi?field=0®exp=Jo urnal+of+Pediatric+Health+Care+:+Official+Publication+of+National+A ssociation+of+Pediatric+Nurse+Associates+&+Practitioners&dispmax=2 0&dispstart=0
·
Journal of the American Academy of Child and Adolescent Psychiatry. (J Am Acad Child Adolesc Psychiatry) http://www.ncbi.nlm.nih.gov/entrez/jrbrowser.cgi?field=0®exp=Jo urnal+of+the+American+Academy+of+Child+and+Adolescent+Psychiat ry&dispmax=20&dispstart=0
·
Medical Hypotheses. (Med Hypotheses) http://www.ncbi.nlm.nih.gov/entrez/jrbrowser.cgi?field=0®exp=M edical+Hypotheses&dispmax=20&dispstart=0
·
Physiology & Behavior. (Physiol Behav) http://www.ncbi.nlm.nih.gov/entrez/jrbrowser.cgi?field=0®exp=Ph ysiology+&+Behavior&dispmax=20&dispstart=0
Periodicals and News 197
·
Prostaglandins, Leukotrienes, and Essential Fatty Acids. (Prostaglandins Leukot Essent Fatty Acids) http://www.ncbi.nlm.nih.gov/entrez/jrbrowser.cgi?field=0®exp=Pr ostaglandins,+Leukotrienes,+and+Essential+Fatty+Acids&dispmax=20& dispstart=0
·
Psychiatry and Clinical Neurosciences. (Psychiatry Clin Neurosci) http://www.ncbi.nlm.nih.gov/entrez/jrbrowser.cgi?field=0®exp=Ps ychiatry+and+Clinical+Neurosciences&dispmax=20&dispstart=0
·
Psychiatry Research. (Psychiatry Res) http://www.ncbi.nlm.nih.gov/entrez/jrbrowser.cgi?field=0®exp=Ps ychiatry+Research&dispmax=20&dispstart=0
·
Research in Developmental Disabilities. (Res Dev Disabil) http://www.ncbi.nlm.nih.gov/entrez/jrbrowser.cgi?field=0®exp=Re search+in+Developmental+Disabilities&dispmax=20&dispstart=0
·
The British Homoeopathic Journal. (Br Homeopath J) http://www.ncbi.nlm.nih.gov/entrez/jrbrowser.cgi?field=0®exp=Th e+British+Homoeopathic+Journal&dispmax=20&dispstart=0
·
The British Journal of Psychiatry; the Journal of Mental Science. (Br J Psychiatry) http://www.ncbi.nlm.nih.gov/entrez/jrbrowser.cgi?field=0®exp=Th e+British+Journal+of+Psychiatry;+the+Journal+of+Mental+Science&disp max=20&dispstart=0
·
The British Journal of Psychology. (Br J Psychol) http://www.ncbi.nlm.nih.gov/entrez/jrbrowser.cgi?field=0®exp=Th e+British+Journal+of+Psychology&dispmax=20&dispstart=0
·
The European Journal of Neuroscience. (Eur J Neurosci) http://www.ncbi.nlm.nih.gov/entrez/jrbrowser.cgi?field=0®exp=Th e+European+Journal+of+Neuroscience&dispmax=20&dispstart=0
·
The Medical Journal of Australia. (Med J Aust) http://www.ncbi.nlm.nih.gov/entrez/jrbrowser.cgi?field=0®exp=Th e+Medical+Journal+of+Australia&dispmax=20&dispstart=0
198 Autism
Vocabulary Builder Infusion: The therapeutic introduction of a fluid other than blood, as saline solution, solution, into a vein. [EU] Malformation: A morphologic defect resulting from an intrinsically abnormal developmental process. [EU] Remission: A diminution or abatement of the symptoms of a disease; also the period during which such diminution occurs. [EU]
Physician Guidelines and Databases 199
CHAPTER 9. PHYSICIAN GUIDELINES AND DATABASES Overview Doctors and medical researchers rely on a number of information sources to help children with autism. Many will subscribe to journals or newsletters published by their professional associations or refer to specialized textbooks or clinical guides published for the medical profession. In this chapter, we focus on databases and Internet-based guidelines created or written for this professional audience.
NIH Guidelines For the more common medical conditions, the National Institutes of Health publish guidelines that are frequently consulted by physicians. Publications are typically written by one or more of the various NIH Institutes. For physician guidelines, commonly referred to as “clinical” or “professional” guidelines, you can visit the following Institutes: ·
Office of the Director (OD); guidelines consolidated across agencies available at http://www.nih.gov/health/consumer/conkey.htm
·
National Institute of General Medical Sciences (NIGMS); fact sheets available at http://www.nigms.nih.gov/news/facts/
·
National Library of Medicine (NLM); extensive encyclopedia (A.D.A.M., Inc.) with guidelines: http://www.nlm.nih.gov/medlineplus/healthtopics.html
·
National Institute of Neurological Disorders and Stroke (NINDS); neurological disorder information pages available at http://www.ninds.nih.gov/health_and_medical/disorder_index.htm
200 Autism
·
National Institute of Child Health and Human Development (NICHD); guidelines available at http://www.nichd.nih.gov/publications/pubskey.cfm
In this chapter, we begin by reproducing one such guideline for autism:
Autism Question and Answers for Health Care Professionals30 Autism is a complex, biological, developmental disability that causes problems with social interaction and communication. It is usually associated with restrictive or repetitive interests and behaviors throughout life. In the past, little was known about this condition. It was thought to be rare, institutionalization was the main form of treatment, and it was said to be the result of “cold mothers. Researchers have since discovered that all of these characteristics are untrue. For a health care professional, the challenge of how to handle a patient with autism is especially difficult for a variety of reasons. This publication highlights questions commonly asked by health care professionals about autism and provides answers based on the latest autism research. Many of the answers provided here resulted from studies conducted by the Network on the Neurobiology and Genetics of Autism: Collaborative Programs of Excellence in Autism (CPEA), a worldwide research network co-sponsored by the National Institute of Child Health and Human Development (NICHD) and the National Institute on Deafness and Other Communication Disorders (NIDCD), parts of the National Institutes of Health (NIH). The CPEA Network conducts research on the genetics and neurobiology of autism, through partnerships among more than 25 universities in the U.S., Canada, Britain, and France. As the largest single autism-specific research endeavor to date, the CPEA is trying to understand autism and its many facets. Other individual NICHD- and NIH-supported scientists are also contributing new knowledge to this cause. Information provided in this document about autism symptoms and diagnosis also comes from The Screening and Diagnosis of Autism Spectrum Disorders, an article authored by a multidisciplinary Consensus Panel assembled at the NIH in 1998. This panel, composed of seven NIH Institutes, Adapted from The National Institute of Child Health and Human Development (NICHD): http://www.nichd.nih.gov/publications/pubs/autism/QA/index.htm.
30
Physician Guidelines and Databases 201
nine professional organizations, and three autism parents’ groups, reviewed over 2,500 scientific publications on screening for and diagnosing autism. The resulting article was published in the Journal of Autism and Developmental Disabilities in 1999 (Volume 29, Number 6, pages 439-484). Subsequently, many medical academies, professional organizations, and parent and advocacy groups in autism, led by the American Academy of Neurology and the Child Neurology Society, met to build on the Panel’s base, developing a practice parameter and providing clinical guidance for screening and diagnosing autism. The practice parameter was published in Neurology in 2000, and in Pediatrics in 2001. Other medical and professional journals are expected to publish the parameter in the future.
What Is the Prevalence of Autism? Although the exact prevalence of autism is not yet known, estimates range from one-in-500, to one-in-1,000 cases in the United States. Current statistics show that autism occurs in all racial, ethnic, and social groups, and that boys are three-to-four times more likely to be affected. Initial studies done in the 1960s indicated that autism had a prevalence rate of four-to-five cases in 10,000, which is why the condition was thought to be rare. However, current prevalence estimates are not consistent with prevalence rates for a rare disease. Further, recent U.S. and international data point to a steep increase in prevalence of the condition. However, many epidemiologists believe that recent changes in diagnostic criteria and in the conditions that are classified as autism spectrum disorders could account for some of the increased prevalence.
What Causes Autism? A variety of factors are thought to be involved with causing autism. Recent studies suggest a genetic element, possibly a predisposition, is involved in causing autism very early in a child’s in utero growth. Other causes may include infectious, neurological, metabolic, and environmental factors. Some of the researchers in the CPEA are focusing their efforts on possible genetic causes of autism. In 2000, scientists in the CPEA Network released the results of two studies that found genes were involved in autism. Additional papers were published in 2001 by CPEA researchers and other
202 Autism
NIH-funded scientists as part of an international consortium on genetics research. These results lead researchers to believe that some people could have a genetic predisposition that makes them more likely to develop autism. The CPEA Network and other NICHD-supported researchers are also looking into other factors that could be involved in autism, in addition to genetics. For a complete bibliography of autism-related publications from CPEA researchers and other NICHD- and NIH-funded scientists, visit the NICHD autism Web site at http://www.nichd.nih.gov/autism/bib.cfm. Even though the research community is uncertain of the exact cause of autism, it is clear that the quality of parenting is not a cause or a contributing factor to autism. Autism is a devastating disease for patients and families; any suggestion that the family caused the condition only worsens the situation.
Is There a Link Between Autism and Vaccines? To date there has been no conclusive, scientific evidence that any part of a vaccine, nor any combination of vaccines causes autism. There is also no conclusive data that any type of preservative (i.e., thimerisol) used during the manufacture of vaccines plays any role in causing autism. In 2001, the Institute of Medicine (IOM) and the American Academy of Pediatrics (AAP) released findings from their separate reviews of the available evidence on a possible link between vaccines and autism. Both groups found, independently of one another, that existing evidence does not support such a connection (Immunization Safety Review Committee 2001; Halsey et al 2001). Because there is no conclusive scientific evidence of a link between autism and vaccines, the National Immunization Program at the Centers for Disease Control and Prevention (CDC), along with the AAP and the American Academy of Family Physicians, suggest that physicians follow the recommended childhood immunization schedule that is published every year (MMWR 1998; Halsey et al 2001). Physicians are advised to take careful family histories of all their patients to bring to light any factors that might influence their recommendations about the timing of vaccinations. The CPEA Network, funded by the NICHD and the NIDCD, with additional funding from the CDC, is working to study autism and its relation to the measles/mumps/rubella (MMR) vaccine. CPEA researchers will compare
Physician Guidelines and Databases 203
vaccination records of groups of people with autism, to those who do not have autism, to see if the onset of autism symptoms was associated with getting the MMR vaccine or other vaccines. Lab tests in this study will also look for any signs of persistent infections that could be related to the MMR vaccine. The NICHD fact sheet titled Autism Research at the NICHD—Autism and the MMR Vaccine has more information about this and other studies related to vaccines and autism. This publication and other fact sheets about autism are available on the NICHD Autism Web Site, at www.nichd.nih.gov/autism, or from the NICHD Clearinghouse at 1-800370-2943.
What Is the Clinical Phenotype of Autism? Because of the similarities and differences among people with different forms of autism, health care professionals now view autism as having a broader clinical phenotype than was once thought. The expanded phenotype goes beyond the standard definition for autism, to include, as the DSM-IV states, a range of impairments rather than the absolute presence or absence of a certain behavior or symptom (DSM 1994). The DSM-IV uses the terms “pervasive developmental disorder (PDD)” and “autism spectrum disorder (ASD)” to describe five variations of autistic behavior; the International Classification of Disease (ICD), published by the World Health Organization (WHO), has eight variations of PDD.
What Disorders Does PDD or ASD Include? According to the DSM-IV, the umbrella PDD or ASD category includes: ·
Autistic disorder (sometimes called “classic” autism)
·
Asperger syndrome
·
Childhood disintegrative disorder
·
Rett syndrome
·
PDD Not Otherwise Specified (NOS) or atypical autism
Depending on his or her specific symptoms, a person with autism or ASD can be in any one of these categories.
204 Autism
In 1999, NICHD-supported researchers identified the gene responsible for Rett Syndrome, one of the conditions included in the ASD category. Rett Syndrome occurs only in girls and causes them to develop autism-like symptoms after seemingly normal development. This discovery could lead to improved detection, prevention, and treatment of Rett Syndrome. Advances in detecting, preventing, and treating Rett Syndrome may shed light on ways to understand and treat ASDs, including those aspects of ASD that may involve regression.
What Is My Role As a Health Care Professional in Caring for a Child with Autism? Because diagnosis of autism is difficult, only a health care professional who specializes in the treatment of children with autism should perform a formal evaluation and diagnosis for autism. However, health care professionals who are not specialists can assist in getting a person with autism the help he or she needs. Autism is a treatable condition. People with autism benefit from early intervention and show multiple outcomes to treatments. Health care professionals who are not autism specialists can provide the vital “first step” in the process of diagnosis—screening. By recognizing the symptoms of autism, you can refer children who exhibit these symptoms to the appropriate specialist(s) for further evaluation. By increasing your own knowledge of the common symptoms of autism, and sharing that information with your colleagues, your staff, the families in your care, and others in the community, you can help ensure that those who need help get it.
What Are the Symptoms of Autism? The symptoms of autism vary in both occurrence and severity, which makes diagnosis difficult. According to the DSM-IV, the general symptoms for autistic disorder (hereafter referred to as autism) include the following: ·
A total of six (or more) items from a list of qualitative impairments in the following categories: -
Social interactions (at least two from this group),
-
Communication (at least one from this groups), and
Physician Guidelines and Databases 205
-
Restrictive repetitive and stereotypic patterns of behavior, interests, and activities (at least one from this group).
·
Delays or abnormal functioning in (1) social interaction, (2) language used as social communication, or (3) symbolic or imaginative play, with onset before age three.
·
Symptoms that cannot be described as Rett syndrome or Childhood Disintegrative Disorder.
Please refer to the DSM-IV for a complete listing and explanation of these criteria.
When Is the Usual Onset of Symptoms? The symptoms of autism are usually measurable by 18 months of age, although parents and experts in autism treatment can usually detect symptoms before this time. Formal diagnoses can be made by age two, but are usually made between ages two and three, when the child shows delays in language development. Recent studies show that at least 20 percent of children with autism experienced a “regression,” as reported by their parents. These children have a mostly normal development followed by a loss of social and communication skills. There is little information, however, about trends in such regression, such as age of onset, severity, or possible triggers. To learn more about regression in autism, the CPEA Network, with additional funding from the CDC, is conducting research on autism, regression, and the MMR vaccine. CPEA scientists will compare vaccination records of three groups of people: those who had autism at birth, those who regressed into autism after seemingly normal development, and those who do not have autism. Through this comparison, the scientists hope to determine if regressive autism might be a definable subgroup of ASD, and if the MMR vaccine plays any role in the onset of symptoms in that subgroup.
206 Autism
Are There Any Indications that Require Immediate Evaluation for Autism? A child should definitely be evaluated for autism immediately, if he or she has: ·
No babbling by 12 months
·
No gesturing (pointing, waving bye-bye, etc.) by 12 months
·
No single words by 16 months
·
No two-word (not just echolalic) phrases by 24 months
·
Any loss of any language or social skills at any age
What Other Parental Concerns Should Prompt a Health Care Provider to Evaluate a Child for Autism? There are a number of symptoms reported by parents that should be red flags for pediatricians. You should evaluate a child for autism, if the parents report that the child: ·
Does not respond to his/her name
·
Cannot tell what he/she wants
·
Has language delay(s)
·
Doesn’t follow directions
·
Appears deaf at times
·
Seems to hear sometimes, but not others
·
Doesn’t point or wave bye-bye
·
Used to say a few words, now doesn’t
·
Has tantrums
·
Has odd movement patterns
·
Is hyperactive, uncooperative, or oppositional
·
Doesn’t know how to play with toys
·
Gets stuck on things over and over
·
Doesn’t smile socially
·
Seems to prefer to play alone
·
Gets things for him/herself
Physician Guidelines and Databases 207
·
Is very independent
·
Does things “early”
·
Has poor eye contact
·
Is in his/her “own world”
·
Tunes people out
·
Is not interested in other children
·
Walks on his or her toes
·
Has unusual attachments to toys or other unusual objects (i.e., always holding a certain toy or saving or holding string)
·
Lines things up
Do Parents Typically Overreact When They Think Their Child Has a Problem? Parents are the best observers of their children’s day-to-day growth and development because they spend so much time with the children. In most cases, parents who suspect that their child has autism will present it to their child’s doctor at a well-child visit as either a suspected speech or language delay or a problem with social development (with or without a speechlanguage problem). Most pediatricians take parents’ concerns about speech or language delay seriously and follow up with evaluation using standard screening methods. Concerns about social development should also be taken very seriously. In the Screening and Diagnosis of Autism Spectrum Disorders (Filipek et al 1999), the Consensus Panel indicates, Any concerns regarding problems with social development should always be taken seriously, as seriously as an older child’s complaint of back or chest pain. Unlike “stomachaches” and “headaches” which are common, selflimiting, and can often be treated symptomatically without a diagnostic workup, a complaint about of back or chest pain is rare and deserves investigation. Similarly, parents rarely complain of social delays or problems, so any and all such concerns should be immediately investigated. It is even more significant when parents voice additional concerns in the communication and behavior areas as well as in socialization. Children with autism and their families reap many benefits from early intervention. Treating parental concerns seriously and respectfully is important to the child, to the family, and to your relationship with them as a health care provider.
208 Autism
How Can I Determine Whether a Parental Concern Actually Constitutes a Social or Behavioral Development Problem? Be specific when asking questions about a child’s development. The more specific the question, the more exact the response. For instance, ·
Does your child…Smile in response to a smile from others?
·
Does your child…Engage in reciprocal, back-and-forth play?
·
Does your child…Have anything odd in his/her speech?
·
Does your child…Avoid or have limited pretend play?
Consult the list of “Red Flags“ above to identify additional questions and question topics.
What Is the Typical Process for Diagnosing a Child with Autism? A general flow chart describing the suggested screening and diagnosis process is shown below. For a more complete description, please consult the American Academy of Neurology/Child Neurology Society’s Practice Parameter (Filipek et al 2000).
Physician Guidelines and Databases 209
Are There Any Screening or Diagnostics Tools I Can Use to Help Identify Children Who Might Need Additional Evaluation? Yes. The Consensus Panel that wrote The Screening and Diagnosis of Autism Spectrum Disorders recommends several developmental screening tools: ·
The Ages and Stages Questionnaire
·
The BRIGANCE® Screens
·
The Child Development Inventories
210 Autism
·
The Parents’ Evaluation of Developmental Status
In addition, there are a number of screening tools that are specific to autism, including: ·
Pervasive Developmental Disorders Screening Test (PDDST)
·
Checklist for Autism in Toddlers (CHAT)
·
Australian Scale for Asperger’s Syndrome
The Panel also indicates that the Denver II (formerly the Denver Developmental Screening Test-Revised) is not recommended as a developmental screening tool for autism. Health care professionals should perform developmental screening at every well-baby and well-child visit, through the preschool years. If a child shows any of the characteristics listed earlier as definite indications for further evaluation, the child and his or her family should see a specialist in child development or another appropriate health care professional to begin testing for autism. For a complete list and description of these diagnostic tools, consult the American Academy of Neurology/Child Neurology Society’s Practice Parameter (Filipek et al 2000).
What Do I Do Once a Child in My Care Is Diagnosed with Autism? According to Public Law 105-17: Individuals with Disabilities Act-IDEA (1997), the child’s primary care provider is required to give the family a referral to an early intervention service. Services vary by state. The family with a child under age three should be referred to the community zero-tothree service system. The local school district must provide free and appropriate services for a family with a child three or older. You should also make sure the child and his or her family follow-up the diagnosis with appropriate care and treatment.
Physician Guidelines and Databases 211
Is There a Cure for Autism? To date, there is no cure for autism, and children do not outgrow the symptoms. However, there are a number of treatments available that can help people with autism and their families lead more normal lives. Individualized, intensive behavioral interventions, preferably beginning before age two-and-a-half or three, have provided the most dramatic and lasting improvements, in some cases resulting in normal to near-normal functioning. Any delay in diagnosis and referral to services can diminish the benefits of intensive, early interventions. In addition, there are pharmacological treatments that do not cure autism, but may relieve some of the symptoms.
Are There Treatments for Autism? Many families of children and adults with autism are finding new hope from a variety of treatments for autism. These treatments include (but are not limited to): ·
Individualized Education Programs (IEPs) are an effective way to prevent problem behaviors typically related to autism. IEPs involve a variety of interventions, including some of those mentioned below, and are designed to help a child or adult with autism to overcome his or her specific problems. Children with autism seem to respond very well to IEPs that are properly designed and systematically implemented.
·
Comprehensive Treatment Programs encompass a number of different theories about treating autism. These programs range from specific methods of learning, to applied behavior analysis, to reaching certain developmental goals. In general, children need to be in this type of program for 15-40 hours a week, for two years or more, to change their behaviors and experience benefits.
·
Applied Behavior Analysis (ABA) generally focuses on reducing specific problem behaviors and teaching new skills. Recently, ABA programs have broadened their scope to include interventions for use before or between episodes of problem behaviors, in addition to interventions that are useful during or after these episodes. By showing children or adults with autism how to handle things like a change in schedule, furniture that has been moved, and meeting new people, ABA can reduce the chances that these situations will trigger problem behaviors.
212 Autism
·
Positive Behavioral Interventions and Support (PBS) is an approach that tries to increase positive behaviors, decrease problem behavior, and improve the child or adult’s lifestyle. The PBS method looks at the interactions between people with autism, their environments, their behavior, and their learning processes to try and develop the best lifestyle for them.
·
Pharmacological treatments can also be effective in improving the behavior or abilities of a person with autism. In general, these medications are called “psychoactive” because the drugs affect the brain of a person with autism. Medication is often used to deal with a specific behavior, like reducing self-injurious behavior or aggression, which may allow the person with autism to focus on other things, like learning.
When considering treatment options, it is important that patients with autism be evaluated for co-morbid, potentially treatable conditions, such as seizures, allergies, gastrointestinal problems, or sleep disorders. Treatment of these co-morbid features may not cure autism, but can lead to improvements in quality-of-life for both patients and their families.
Where Can I Go for More Information about Autism? The NICHD Clearinghouse provides information on autism and autism research, and on other topics related to the health of children, adults, and families. The information specialists at the NICHD Clearinghouse are available at: Mail: PO Box 3006, Rockville, MD 20847 Phone: 1-800-370-2943 Fax: 301-984-1473 Email:
[email protected] The NICHD Autism Web Page, www.nichd.nih.gov/autism, offers information on NICHD autism research, including the CPEA Network, current grants and funding mechanisms, ongoing clinical trials, and the NIH Autism Coordinating Committee. With a variety of information on topics related to autism, the NICHD Autism Web site is a good place to start your search for information. You can also comment on the Autism Research at the NICHD fact sheets through the Autism Web site.
Physician Guidelines and Databases 213
Are There Other Autism Information Resources I Can Consult? The National Library of Medicine (NLM) offers the following features: ·
MEDLINEplus, serves as a gateway to all the NIH resources about autism, including the NICHD Autism Web page and Web sites of other Institutes that are researching different aspects of autism. It also provides links to recent news articles about autism, as well as to non-government organizations with autism as their focus. To access MEDLINEplus, go to www.nlm.nih.gov/medlineplus, and do a search for “autism.”
·
MEDLINE, allows you to search hundreds of medical journals, millions of medical abstracts, and the NLM Medical Subject Headings;
·
Loansome Doc, allows you to request printed copies of journal articles for a fee.
NIH Databases In addition to the various Institutes of Health that publish professional guidelines, the NIH has designed a number of databases for professionals.31 Physician-oriented resources provide a wide variety of information related to the biomedical and health sciences, both past and present. The format of these resources varies. Searchable databases, bibliographic citations, full text articles (when available), archival collections, and images are all available. The following are referenced by the National Library of Medicine:32 ·
Bioethics: Access to published literature on the ethical, legal and public policy issues surrounding healthcare and biomedical research. This information is provided in conjunction with the Kennedy Institute of Ethics located at Georgetown University, Washington, D.C.: http://www.nlm.nih.gov/databases/databases_bioethics.html
·
HIV/AIDS Resources: Describes various links and databases dedicated to HIV/AIDS research: http://www.nlm.nih.gov/pubs/factsheets/aidsinfs.html
·
NLM Online Exhibitions: Describes “Exhibitions in the History of Medicine”: http://www.nlm.nih.gov/exhibition/exhibition.html. Additional resources for historical scholarship in medicine: http://www.nlm.nih.gov/hmd/hmd.html
Remember, for the general public, the National Library of Medicine recommends the databases referenced in MEDLINEplus (http://medlineplus.gov/ or http://www.nlm.nih.gov/medlineplus/databases.html). 32 See http://www.nlm.nih.gov/databases/databases.html. 31
214 Autism
·
Biotechnology Information: Access to public databases. The National Center for Biotechnology Information conducts research in computational biology, develops software tools for analyzing genome data, and disseminates biomedical information for the better understanding of molecular processes affecting human health and disease: http://www.ncbi.nlm.nih.gov/
·
Population Information: The National Library of Medicine provides access to worldwide coverage of population, family planning, and related health issues, including family planning technology and programs, fertility, and population law and policy: http://www.nlm.nih.gov/databases/databases_population.html
·
Cancer Information: Access to caner-oriented databases: http://www.nlm.nih.gov/databases/databases_cancer.html
·
Profiles in Science: Offering the archival collections of prominent twentieth-century biomedical scientists to the public through modern digital technology: http://www.profiles.nlm.nih.gov/
·
Chemical Information: Provides links to various chemical databases and references: http://sis.nlm.nih.gov/Chem/ChemMain.html
·
Clinical Alerts: Reports the release of findings from the NIH-funded clinical trials where such release could significantly affect morbidity and mortality: http://www.nlm.nih.gov/databases/alerts/clinical_alerts.html
·
Space Life Sciences: Provides links and information to space-based research (including NASA): http://www.nlm.nih.gov/databases/databases_space.html
·
MEDLINE: Bibliographic database covering the fields of medicine, nursing, dentistry, veterinary medicine, the healthcare system, and the pre-clinical sciences: http://www.nlm.nih.gov/databases/databases_medline.html
·
Toxicology and Environmental Health Information (TOXNET): Databases covering toxicology and environmental health: http://sis.nlm.nih.gov/Tox/ToxMain.html
·
Visible Human Interface: Anatomically detailed, three-dimensional representations of normal male and female human bodies: http://www.nlm.nih.gov/research/visible/visible_human.html
While all of the above references may be of interest to physicians who study and treat autism, the following are particularly noteworthy.
Physician Guidelines and Databases 215
The Combined Health Information Database A comprehensive source of information on clinical guidelines written for professionals is the Combined Health Information Database. You will need to limit your search to “Brochure/Pamphlet,” “Fact Sheet,” or “Information Package” and autism using the “Detailed Search” option. Go directly to the following hyperlink: http://chid.nih.gov/detail/detail.html. To find associations, use the drop boxes at the bottom of the search page where “You may refine your search by.” For the publication date, select “All Years,” select your preferred language, and the format option “Fact Sheet.” By making these selections and typing “autism” (or synonyms) into the “For these words:” box above, you will only receive results on fact sheets dealing with autism. The following is a sample result: ·
Pediatrician's Role in the Diagnosis and Management of Autistic Spectrum Disorder in Children. Technical Report Source: Pediatrics. 107(5): [18 p.]. May 2001. Contact: Available from American Academy of Pediatrics. 141 Northwest Point Boulevard, Elk Grove Village, IL 60007-1098. (888) 227-1773. Fax (847) 434-8000. E-mail:
[email protected]. Website: www.pediatrics.org. Full text of this article is available at www.pediatrics.org/cgi/content/full/107/5/e85. Summary: Autism and its milder variants are not rare. Most pediatricians will have the opportunity to care for a child with autism. This technical report serves to complement and expand on the information in the accompanying policy statement which aims to increase the pediatrician's knowledge and comfort level in caring for children with autism. In so doing, the authors anticipate that earlier diagnosis and referral for appropriate intervention will be possible. This, in turn, will have a positive effect on long term outcomes for children with autism and their families. Early management strategies include parental education and support, early intervention (children younger than 3 years), school based special education (children older than 3 years), behavior management, medical treatment, community services, and alternative therapies. The authors emphasize that early diagnosis has become increasingly important, as recent studies have shown improved outcomes with implementation of early, consistent, and appropriate intervention strategies that have been individually tailored to the needs of the child and parents. The pediatrician can play a significant role by acting immediately on parental concerns, monitoring behavior and development, referring promptly for a comprehensive evaluation, searching for etiology and comorbid (coexisting illness) conditions,
216 Autism
expediting enrollment and implementation of appropriate interventions, managing medical issues, and coordinating care among various service delivery systems. This approach could minimize the disabling aspects of ASD. 201 references. ·
Practice Parameter: Screening and Diagnosis of Autism. Report of the Quality Standards Subcommittee of the American Academy of Neurology and the Child Neurology Society Source: Neurology. 55(4): 468-479. August 22, 2000. Contact: Available from Lippincott Williams and Wilkins. 12107 Insurance Way, Hagerstown, MD 21740. (800) 638-3030 or (301) 714-2300. Fax (301) 824-7390. Summary: Autism is a common disorder of childhood, affecting 1 in 500 children. Yet, it often remains unrecognized and undiagnosed until or after late preschool age because appropriate tools for routine developmental screening and screening specifically for autism have not been available. Early identification of children with autism and intensive, early intervention during the toddler and preschool years improves outcome for most young children with autism. This article reviews the available empirical evidence in this field and offers specific recommendations for the identification of children with autism. This approach requires a dual process. Routine developmental surveillance and screening specifically for autism should be performed on all children to first identify those at risk for any type of atypical development, and then to identify those specifically at risk for autism. Second, strategies must be used to diagnose and evaluate autism, and to differentiate autism from other developmental disorders. A diagnostic algorithm is provided, as is a chart of the diagnostic criteria for autistic disorder (299.00). The article concludes with a list of consensus based general principles of management, in the areas of surveillance and screening, diagnosis, medical and neurologic evaluation, evaluation and monitoring of autism, speech, language and communication evaluation, cognitive and adaptive behavior evaluations, sensorimotor and occupational therapy evaluations, and neuropsychological, behavioral, and academic assessments. 1 figure. 1 table. 101 references.
·
Measuring outcomes in children's services Source: Providence, RI: Fraser A. Lang; Manisses Communications Group. 1999. 250 pp. Contact: Available from Manisses Communications Group, 208 Governor Street, Providence, RI 02906. Telephone: (800) 333-7771 / fax: (401) 861-
Physician Guidelines and Databases 217
6370 / Web site: http://www.manisses.com. $75.00 plus $5.95 shipping and handling. Summary: This guide describes outcome evaluation in the field of children's services. Each chapter contains two kinds of articles: digests of journal articles, and field reports from programs and consultants working on outcomes evaluation. Each article reports results from a given intervention and explains what tools were used to measure client outcomes. The guide also points out important strengths and/or weaknesses of the approaches used in the outcomes evaluation studies discussed. Topics covered include anxiety and other emotional disorders, attention-deficit hyperactivity disorder, autism, depression and suicide, eating disorders, conduct disorders, risky behavior, substance abuse, juvenile delinquency, and child abuse and neglect. ·
Healthy from the start: Why America needs a better system to track and understand birth defects and the environment Source: Baltimore, MD: Pew Environmental Health Commission. [1999]. 86 pp. Contact: Available from Pew Environmental Health Commission, Johns Hopkins School of Public Health, 111 Market Street, Suite 850, Baltimore, MD 21202. Available from the Web site at no charge. Summary: This report examines the need for a comprehensive, modern tracking system to identify environmental and other preventable factors that contribute to birth defects and other disabilities and preventable diseases. The first section of the report discusses the connection between environmental exposures and birth defects, preterm and low birthweight, cerebral palsy, mental retardation and autism. The second section analyzes existing information from the National Center for Health Statistics and state birth defects registries to understand the rates and time trends of infant mortality, low birthweight, preterm birth, and birth defects and the geographic variability of birth defects in the United States. The third section of the report examines the adequacy, comprehensiveness, and quality of state birth defects surveillance systems.
·
Facts About Fragile X Syndrome Source: Bethesda, MD: National Institutes of Child Health and Human Development, National Institutes of Health (NIH). April 1996. 15 p. Contact: Available from National Institutes of Child Health and Human Development (NICHD). National Institutes of Health (NIH), 31 Center
218 Autism
Drive, Room 2A32, MSC2425, Bethesda, MD 20892-2425. Price: Single copy free. NIH Publication Number 96-3402. Summary: This brochure describes Fragile X syndrome, the most common genetically-inherited form of mental retardation currently known. In addition to intellectual disability, some individuals with Fragile X display common physical traits and characteristic facial features, such as prominent ears. Mental impairment may range from mild learning disability and hyperactivity to severe mental retardation and autism. The brochure describes Fragile X and the research effort that led to the 1991 discovery of the gene (FMR-1) that, when damaged, causes Fragile X. The brochure then discusses inheritance, testing for the Fragile X gene, prenatal tests, diagnosis and treatment, physical disabilities associated with Fragile X, speech language and learning disabilities associated with Fragile X, medical problems, educational considerations, and future research strategies. In discussing accommodations for children with Fragile X, the brochure notes that to counter the sensory integration difficulties often present, techniques such as minimizing exposure to noise and odors may prevent overstimulation. Therapeutic calming techniques, such as music therapy, may also be useful. Many children with Fragile X achieve above the level that would have been predicted from measured IQ; it is important for parents and educators to help these children reach their maximum potential. The brochure includes a brief description of two resource organizations, the National Fragile X Foundation and the FRAXA Research Foundation, Inc.; the contact information for both is included. ·
Epidemiology of Problems Leading to Communicative Disorders Source: in Billeaud, F.P. Communication Disorders in Infants and Toddlers: Assessment and Intervention. Woburn, MA: ButterworthHeinemann. 1993. p. 8-18. Contact: Available from Butterworth-Heinemann, 225 Wildwood Avenue, Unit B, Woburn, MA 01801-2041. (617) 928-2500; Fax (617) 9336333. Price: $35.00 plus shipping and handling. ISBN: 1563720361. Summary: This chapter, from a book on communication disorders in infants and children, discusses the epidemiology of problems leading to communicative disorders. The introductory section provides a statistical overview of the types of problems, including chromosomal anomalies, prenatal drug exposure, fetal alcohol syndrome, cerebral palsy, hearing impairment, autism, premature birth, and regulatory disorders of infancy. Other topics covered include the identification of handicaps, including both high-visibility and low-visibility communication disorders; some reasons for delayed intervention; the importance of early
Physician Guidelines and Databases 219
intervention and how to achieve it; intervention for children with obvious problems; and intervention for children with less obvious conditions, such as hearing impairment and atypical language development. The author concludes with a brief discussion of the costeffectiveness of providing early intervention services for children. ·
Augmentative Communication: Consumers Source: Rockville, MD: American Speech-Language-Hearing Association (ASHA). 199x. 36 p. Contact: Available from American Speech-Language-Hearing Association (ASHA). Product Sales, 10801 Rockville Pike, Rockville, MD 20852. (888) 498-6699. TTY (301) 897-0157. Website: www.asha.org. Price: $1.50 per booklet. Item Number 0210251. Summary: This consumer information booklet describes the use of augmentative communication for people who can hear but have little or no usable speech. Such severe communication disabilities can result from severe language delay, cerebral palsy, mental retardation, autism, traumatic brain injury (TBI), or stroke. In addition, a variety of specific neuromuscular disorders, such as amyotrophic lateral sclerosis (ALS), dystonia, Huntington's disease, multiple sclerosis, and muscular dystrophy can also cause severe speech problems. Augmentative communication is defined as any method other than speech, to send a message from one person to another. Techniques of augmentative communication range from specialized gestures and sign language to communication aids such as sign boards to highly specialized computerbased techniques. The booklet emphasizes the implementation of an effective augmentative communication system, regardless of level of sophistication, requires a detailed multidisciplinary assessment, training for the user(s), and regular re-evaluation. The booklet outlines the roles of members of the patient care team, including the speech language pathologist, the occupational therapist, the physical therapist, physicians, the educator, social worker, psychologist, rehabilitation engineer, computer programmer, vocational counselor, audiologist, orthotist, and manufacturers or distributors of communication devices. The author encourages readers to become active partners in their own care or the care of their children with communication disorders. The booklet includes a resource list of professional and consumer groups concerned with augmentative communication. An appendix provides a glossary of some of the terms used in augmentative communication. The booklet is illustrated with black and white photographs.
220 Autism
·
Center for Speech and Language Disorders Source: Elmhurst, IL: Center for Speech and Language Disorders. 199x. [2 p.]. Contact: Available from Center for Speech and Language Disorders. 479 Spring Road, Elmhurst, IL 60126. (708) 530-8551; Fax (708) 530-5909. Price: Single copy free. Summary: This brochure describes the Center for Speech and Language Disorders, a nonprofit agency providing speech and language pathology and learning disability services. The major objective of the Center is to provide individualized programs for children and adults with speech and language disorders or learning disabilities. The Center stresses the importance of involving family members and includes the family in planning and implementing remediation programs. The brochure describes the programs available, including educational therapy programs of standard and special educational support, educational support for adults with reading problems, and toilet training consultation for the special child; speech and language pathology programs for children and adults; and professional service programs, including an annual conference and publications about autism and hyperlexia. The brochure concludes with a brief description of the staff members of the Center.
·
Kids on the Block Source: Columbia, MD: Kids on the Block. 199x. 6 p. Contact: Available from Kids on the Block, Inc. 9385-C Gerwig, Columbia, MD 21046. (410) 290-9095; (800) 368-KIDS; Fax (410) 290-9358. Price: Single copy free. Summary: This full-color brochure describes the educational program, 'The Kids on the Block'. Through the use of puppets and scripted presentations, this program teaches audiences of all ages what it's like to be a person who has a disability or a health difference. The puppets are available for purchase through the workshop, which includes training materials to help teachers and presenters. Over 35 programs are available on a variety of disabilities, social concerns, and medical differences; each is researched thoroughly with the national organizations representing the issue. Disabilities covered include autism, blindness, cerebral palsy, deafness, mental retardation, and spina bifida; medical issues covered include AIDS, arthritis, asthma, diabetes, epilepsy, leukemia, pediatric hospice, and severe burns.
Physician Guidelines and Databases 221
·
Caring for Every Child's Mental Health: Communities Together Campaign. [Information packet] Source: Rockville, MD: Center for Mental Health Services, U.S. Department of Health and Human Services. [1996]. 26 items. Contact: Available from U.S. Department of Health and Human Services, Center for Mental Health Services, 5600 Fishers Lane, Room 13-103, Rockville, MD 20857. Telephone: (301) 443-2792. Available at no charge. Summary: This information packet contains materials describing the public education initiative, Caring for Every Child's Mental Health: Communities Together Campaign, promotional materials about the campaign, camera-ready copy promoting the recognition of mental health problems and the campaign itself, and fact sheets. One describes the campaign; one includes a glossary; others provide overviews of these topics: child and adolescent mental health; mental, emotional, and behavior disorders; attention deficit and hyperactivity disorders; autism; conduct disorders; anxiety disorders; depression; and family interactions and how they can affect mental, emotional, and behavior disorders. Still other fact sheets describe systems of care, comprehensive community services, and the provision of culturally competent services.
The NLM Gateway33 The NLM (National Library of Medicine) Gateway is a Web-based system that lets users search simultaneously in multiple retrieval systems at the U.S. National Library of Medicine (NLM). It allows users of NLM services to initiate searches from one Web interface, providing “one-stop searching” for many of NLM’s information resources or databases.34 One target audience for the Gateway is the Internet user who is new to NLM’s online resources and does not know what information is available or how best to search for it. This audience may include physicians and other healthcare providers, researchers, librarians, students, and, increasingly, parents and the public.35 Adapted from NLM: http://gateway.nlm.nih.gov/gw/Cmd?Overview.x. The NLM Gateway is currently being developed by the Lister Hill National Center for Biomedical Communications (LHNCBC) at the National Library of Medicine (NLM) of the National Institutes of Health (NIH). 35 Other users may find the Gateway useful for an overall search of NLM’s information resources. Some searchers may locate what they need immediately, while others will utilize the Gateway as an adjunct tool to other NLM search services such as PubMed® and MEDLINEplus®. The Gateway connects users with multiple NLM retrieval systems while also providing a search interface for its own collections. These collections include various types of information that do not logically belong in PubMed, LOCATORplus, or other established NLM retrieval systems (e.g., meeting announcements and pre-1966 journal 33 34
222 Autism
To use the NLM Gateway, simply go to the search site at http://gateway.nlm.nih.gov/gw/Cmd. Type “autism” (or synonyms) into the search box and click “Search.” The results will be presented in a tabular form, indicating the number of references in each database category. Results Summary Category Items Found Journal Articles 346318 Books / Periodicals / Audio Visual 2566 Consumer Health 294 Meeting Abstracts 3093 Other Collections 100 Total 352371
HSTAT36 HSTAT is a free, Web-based resource that provides access to full-text documents used in healthcare decision-making.37 HSTAT’s audience includes healthcare providers, health service researchers, policy makers, insurance companies, consumers, and the information professionals who serve these groups. HSTAT provides access to a wide variety of publications, including clinical practice guidelines, quick-reference guides for clinicians, consumer health brochures, evidence reports and technology assessments from the Agency for Healthcare Research and Quality (AHRQ), as well as AHRQ’s Put Prevention Into Practice.38 Simply search by “autism” (or synonyms) at the following Web site: http://text.nlm.nih.gov.
citations). The Gateway will provide access to the information found in an increasing number of NLM retrieval systems in several phases. 36 Adapted from HSTAT: http://www.nlm.nih.gov/pubs/factsheets/hstat.html. 37 The HSTAT URL is http://hstat.nlm.nih.gov/. 38 Other important documents in HSTAT include: the National Institutes of Health (NIH) Consensus Conference Reports and Technology Assessment Reports; the HIV/AIDS Treatment Information Service (ATIS) resource documents; the Substance Abuse and Mental Health Services Administration’s Center for Substance Abuse Treatment (SAMHSA/CSAT) Treatment Improvement Protocols (TIP) and Center for Substance Abuse Prevention (SAMHSA/CSAP) Prevention Enhancement Protocols System (PEPS); the Public Health Service (PHS) Preventive Services Task Force’s Guide to Clinical Preventive Services; the independent, nonfederal Task Force on Community Services Guide to Community Preventive Services; and the Health Technology Advisory Committee (HTAC) of the Minnesota Health Care Commission (MHCC) health technology evaluations.
Physician Guidelines and Databases 223
Coffee Break: Tutorials for Biologists39 Some parents may wish to have access to a general healthcare site that takes a scientific view of the news and covers recent breakthroughs in biology that may one day assist physicians in developing treatments. To this end, we recommend “Coffee Break,” a collection of short reports on recent biological discoveries. Each report incorporates interactive tutorials that demonstrate how bioinformatics tools are used as a part of the research process. Currently, all Coffee Breaks are written by NCBI staff.40 Each report is about 400 words and is usually based on a discovery reported in one or more articles from recently published, peer-reviewed literature.41 This site has new articles every few weeks, so it can be considered an online magazine of sorts, and intended for general background information. Access the Coffee Break Web site at http://www.ncbi.nlm.nih.gov/Coffeebreak/.
Other Commercial Databases In addition to resources maintained by official agencies, other databases exist that are commercial ventures addressing medical professionals. Here are a few examples that may interest you: ·
CliniWeb International: Index and table of contents to selected clinical information on the Internet; see http://www.ohsu.edu/cliniweb/.
·
Image Engine: Multimedia electronic medical record system that integrates a wide range of digitized clinical images with textual data stored in the University of Pittsburgh Medical Center’s MARS electronic medical record system; see the following Web site: http://www.cml.upmc.edu/cml/imageengine/imageEngine.html.
·
Medical World Search: Searches full text from thousands of selected medical sites on the Internet; see http://www.mwsearch.com/.
·
MedWeaver: Prototype system that allows users to search differential diagnoses for any list of signs and symptoms, to search medical
39 Adapted
from http://www.ncbi.nlm.nih.gov/Coffeebreak/Archive/FAQ.html. The figure that accompanies each article is frequently supplied by an expert external to NCBI, in which case the source of the figure is cited. The result is an interactive tutorial that tells a biological story. 41 After a brief introduction that sets the work described into a broader context, the report focuses on how a molecular understanding can provide explanations of observed biology and lead to therapies for diseases. Each vignette is accompanied by a figure and hypertext links that lead to a series of pages that interactively show how NCBI tools and resources are used in the research process.
40
224 Autism
literature, and to explore relevant Web http://www.med.virginia.edu/~wmd4n/medweaver.html. ·
sites;
see
Metaphrase: Middleware component intended for use by both caregivers and medical records personnel. It converts the informal language generally used by caregivers into terms from formal, controlled vocabularies; see http://www.lexical.com/Metaphrase.html.
The Genome Project and Autism With all the discussion in the press about the Human Genome Project, it is only natural that physicians, researchers, and parents want to know about how human genes relate to autism. In the following section, we will discuss databases and references used by physicians and scientists who work in this area.
Online Mendelian Inheritance in Man (OMIM) The Online Mendelian Inheritance in Man (OMIM) database is a catalog of human genes and genetic disorders authored and edited by Dr. Victor A. McKusick and his colleagues at Johns Hopkins and elsewhere. OMIM was developed for the World Wide Web by the National Center for Biotechnology Information (NCBI).42 The database contains textual information, pictures, and reference information. It also contains copious links to NCBI’s Entrez database of MEDLINE articles and sequence information. Go to http://www.ncbi.nlm.nih.gov/Omim/searchomim.html to search the database. Type “autism” (or synonyms) in the search box, and click “Submit Search.” If too many results appear, you can narrow the search by adding the word “clinical.” Each report will have additional links to related research and databases. By following these links, especially the link titled “Database Links,” you will be exposed to numerous specialized databases that are largely used by the scientific community. These databases are overly technical and seldom used by the general public, but offer an abundance of information. The following is an example of the results you can obtain from the OMIM for autism: Adapted from http://www.ncbi.nlm.nih.gov/. Established in 1988 as a national resource for molecular biology information, NCBI creates public databases, conducts research in computational biology, develops software tools for analyzing genome data, and disseminates biomedical information--all for the better understanding of molecular processes affecting human health and disease.
42
Physician Guidelines and Databases 225
·
Autism, Susceptibility To, 1 Web site: http://www.ncbi.nlm.nih.gov/htbinpost/Omim/dispmim?209850
·
Macrocephaly/autism Syndrome Web site: http://www.ncbi.nlm.nih.gov/htbinpost/Omim/dispmim?605309
·
Phrase Speech Delay, Autism-related Web site: http://www.ncbi.nlm.nih.gov/htbinpost/Omim/dispmim?606053
Genes and Disease (NCBI - Map) The Genes and Disease database is produced by the National Center for Biotechnology Information of the National Library of Medicine at the National Institutes of Health. This Web site categorizes each disorder by the system of the body associated with it. Go to http://www.ncbi.nlm.nih.gov/disease/, and browse the system pages to have a full view of important conditions linked to human genes. Since this site is regularly updated, you may wish to re-visit it from time to time. The following systems and associated disorders are addressed: ·
Muscle and Bone: Movement and growth. Examples: Duchenne muscular dystrophy, Ellis-van Creveld syndrome, Marfan syndrome, myotonic dystrophy, spinal muscular atrophy. Web site: http://www.ncbi.nlm.nih.gov/disease/Muscle.html
·
Nervous System: Mind and body. Examples: Alzheimer disease, Amyotrophic lateral sclerosis, Angelman syndrome, Charcot-Marie-Tooth disease, epilepsy, essential tremor, Fragile X syndrome, Friedreich’s ataxia, Huntington disease, NiemannPick disease, Parkinson disease, Prader-Willi syndrome, Rett syndrome, Spinocerebellar atrophy, Williams syndrome. Web site: http://www.ncbi.nlm.nih.gov/disease/Brain.html
·
Signals: Cellular messages. Examples: Ataxia telangiectasia, Baldness, Cockayne syndrome, Glaucoma, SRY: sex determination, Tuberous sclerosis, Waardenburg syndrome, Werner syndrome. Web site: http://www.ncbi.nlm.nih.gov/disease/Signals.html
226 Autism
Entrez Entrez is a search and retrieval system that integrates several linked databases at the National Center for Biotechnology Information (NCBI). These databases include nucleotide sequences, protein sequences, macromolecular structures, whole genomes, and MEDLINE through PubMed. Entrez provides access to the following databases: ·
PubMed: Biomedical literature (PubMed), Web site: http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=PubMed
·
Nucleotide Sequence Database (Genbank): Web site: http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=Nucleotide
·
Protein Sequence Database: Web site: http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=Protein
·
Structure: Three-dimensional macromolecular structures, Web site: http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=Structure
·
Genome: Complete genome assemblies, Web site: http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=Genome
·
PopSet: Population study data sets, Web site: http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=Popset
·
OMIM: Online Mendelian Inheritance in Man, Web site: http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=OMIM
·
Taxonomy: Organisms in GenBank, Web site: http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=Taxonomy
·
Books: Online books, Web site: http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=books
·
ProbeSet: Gene Expression Omnibus (GEO), Web site: http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=geo
·
3D Domains: Domains from Entrez Structure, Web site: http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=geo
·
NCBI’s Protein Sequence Information Survey Results: Web site: http://www.ncbi.nlm.nih.gov/About/proteinsurvey/
To access the Entrez system at the National Center for Biotechnology Information, go to http://www.ncbi.nlm.nih.gov/entrez/, and then select the database that you would like to search. The databases available are listed in
Physician Guidelines and Databases 227
the drop box next to “Search.” In the box next to “for,” enter “autism” (or synonyms) and click “Go.”
Jablonski’s Multiple Congenital Anomaly/Mental Retardation (MCA/MR) Syndromes Database43 This online resource can be quite useful. It has been developed to facilitate the identification and differentiation of syndromic entities. Special attention is given to the type of information that is usually limited or completely omitted in existing reference sources due to space limitations of the printed form. At the following Web site you can also search across syndromes using an index: http://www.nlm.nih.gov/mesh/jablonski/syndrome_toc/toc_a.html. You can search by keywords at this Web site: http://www.nlm.nih.gov/mesh/jablonski/syndrome_db.html. The Genome Database44 Established at Johns Hopkins University in Baltimore, Maryland in 1990, the Genome Database (GDB) is the official central repository for genomic mapping data resulting from the Human Genome Initiative. In the spring of 1999, the Bioinformatics Supercomputing Centre (BiSC) at the Hospital for Sick Children in Toronto, Ontario assumed the management of GDB. The Human Genome Initiative is a worldwide research effort focusing on structural analysis of human DNA to determine the location and sequence of the estimated 100,000 human genes. In support of this project, GDB stores and curates data generated by researchers worldwide who are engaged in the mapping effort of the Human Genome Project (HGP). GDB’s mission is to provide scientists with an encyclopedia of the human genome which is continually revised and updated to reflect the current state of scientific knowledge. Although GDB has historically focused on gene mapping, its focus will broaden as the Genome Project moves from mapping to sequence, and finally, to functional analysis. To access the GDB, simply go to the following hyperlink: http://www.gdb.org/. Search “All Biological Data” by “Keyword.” Type Adapted from the National Library of Medicine: http://www.nlm.nih.gov/mesh/jablonski/about_syndrome.html. 44 Adapted from the Genome Database: http://gdbwww.gdb.org/gdb/aboutGDB.html#mission. 43
228 Autism
“autism” (or synonyms) into the search box, and review the results. If more than one word is used in the search box, then separate each one with the word “and” or “or” (using “or” might be useful when using synonyms). This database is extremely technical as it was created for specialists. The articles are the results which are the most accessible to non-professionals and often listed under the heading “Citations.” The contact names are also accessible to non-professionals.
Specialized References The following books are specialized references written for professionals interested in autism (sorted alphabetically by title; hyperlinks provide rankings, information, and reviews at Amazon.com): · Atlas of Pediatric Physical Diagnosis by Basil J. Zitelli, Holly W. Davis (Editor); Hardcover, 3rd edition (March 1997), Mosby-Year Book; ISBN: 0815199309; http://www.amazon.com/exec/obidos/ASIN/0815199309/icongroupinterna · The 5-Minute Pediatric Consult by M. William Schwartz (Editor); Hardcover - 1050 pages, 2nd edition (January 15, 2000), Lippincott, Williams & Wilkins; ISBN: 0683307444; http://www.amazon.com/exec/obidos/ASIN/0683307444/icongroupinterna · The Behavioral Neurology of White Matter by Christopher M. Filley; Paperback - 279 pages; 1st edition (September 15, 2001), Oxford University Press; ISBN: 019513561X; http://www.amazon.com/exec/obidos/ASIN/019513561X/icongroupinterna
· The Cerebellum and Its Disorders by Mario-Ubaldo Manto, Massimo Pandolfo; Hardcover - 1st edition (January 2002), Cambridge University Press; ISBN: 0521771560; http://www.amazon.com/exec/obidos/ASIN/0521771560/icongroupinterna · Clinical Neurology by David A. Greenberg, et al; Paperback - 390 pages; 5th edition (February 9, 2002), Appleton & Lange; ISBN: 0071375430; http://www.amazon.com/exec/obidos/ASIN/0071375430/icongroupinterna · Clinical Neurology for Psychiatrists by David M. Kaufman; Hardcover 670 pages, 5th edition (January 15, 2001), W. B. Saunders Co.; ISBN: 0721689957; http://www.amazon.com/exec/obidos/ASIN/0721689957/icongroupinterna · Comprehensive Neurology by Roger N. Rosenberg (Editor), David E. Pleasure (Editor); 1280 pages, 2nd edition (April 1998), Wiley-Liss; ISBN: 0471169587; http://www.amazon.com/exec/obidos/ASIN/0471169587/icongroupinterna
Physician Guidelines and Databases 229
· Emergent and Urgent Neurology by William J. Weiner (Editor), Lisa M. Shulman (Editor); Hardcover - 571 pages; 2nd edition (January 15, 1999), Lippincott, Williams & Wilkins Publishers; ISBN: 0397518579; http://www.amazon.com/exec/obidos/ASIN/0397518579/icongroupinterna · Nelson Textbook of Pediatrics by Richard E. Behrman (Editor), et al; Hardcover - 2414 pages, 16th edition (January 15, 2000), W B Saunders Co; ISBN: 0721677673; http://www.amazon.com/exec/obidos/ASIN/0721677673/icongroupinterna · Neurology in Clinical Practice: Volume I: Principles of Diagnosis and Management, Volume II: The Neurological Disorders (2-Volume Set, Includes a 12-Month Subscription to the Online Edition) by W. G. Bradley, et al; Hardcover - 2413 pages, 3rd edition, Vol 1-2 (January 15, 2000), Butterworth-Heinemann; ISBN: 0750699736; http://www.amazon.com/exec/obidos/ASIN/0750699736/icongroupinterna · Neuroscience: Exploring the Brain by Mark F. Bear, et al; Hardcover - 855 pages, 2nd edition (January 15, 2001), Lippincott, Williams & Wilkins Publishers; ISBN: 0683305964; http://www.amazon.com/exec/obidos/ASIN/0683305964/icongroupinterna · Office Practice of Neurology by Martain A. Samuels, Steven F. Feske; Hardcover, Churchill Livingstone; ISBN: 0443065578; http://www.amazon.com/exec/obidos/ASIN/0443065578/icongroupinterna · Patient-Based Approaches to Cognitive Neuroscience by Martha J. Farah (Editor), Todd E. Feinberg (Editor); Paperback - 425 pages (April 3, 2000), MIT Press; ISBN: 0262561239; http://www.amazon.com/exec/obidos/ASIN/0262561239/icongroupinterna · Principles of Neural Science by Eric R. Kandel (Editor), et al; Hardcover 1414 pages, 4th edition (January 5, 2000), McGraw-Hill Professional Publishing; ISBN: 0838577016; http://www.amazon.com/exec/obidos/ASIN/0838577016/icongroupinterna · Review Manual for Neurology in Clinical Practice by Karl E. Misulis, et al; Paperback, Butterworth-Heinemann Medical; ISBN: 0750671920; http://www.amazon.com/exec/obidos/ASIN/0750671920/icongroupinterna
Vocabulary Builder Dystrophy: Any disorder arising from defective or faulty nutrition, especially the muscular dystrophies. [EU] Institutionalization:
The caring for individuals in institutions and their
230 Autism
adaptation to routines characteristic of the institutional environment, and/or their loss of adaptation to life outside the institution. [NIH] Neuromuscular: Pertaining to muscles and nerves. [EU] Registries: The systems and processes involved in the establishment, support, management, and operation of registers, e.g., disease registers. [NIH]
Dissertations 231
CHAPTER 10. DISSERTATIONS ON AUTISM Overview University researchers are active in studying almost all known medical conditions. The result of research is often published in the form of Doctoral or Master’s dissertations. You should understand, therefore, that applied diagnostic procedures and/or therapies can take many years to develop after the thesis that proposed the new technique or approach was written. In this chapter, we will give you a bibliography on recent dissertations relating to autism. You can read about these in more detail using the Internet or your local medical library. We will also provide you with information on how to use the Internet to stay current on dissertations.
Dissertations on Autism ProQuest Digital Dissertations is the largest archive of academic dissertations available. From this archive, we have compiled the following list covering dissertations devoted to autism. You will see that the information provided includes the dissertation’s title, its author, and the author’s institution. To read more about the following, simply use the Internet address indicated. The following covers recent dissertations dealing with autism: ·
A Comparison of One-to-one and Group Teaching Instructional Methods across Classrooms Serving Students with Autism and Other Developmental Disabilities by Walker, Dale, Phd from University of Kansas, 1988, 94 pages http://wwwlib.umi.com/dissertations/fullcit/8918424
232 Autism
·
A Comparison of Prompt Delivery Procedures for Increasing Spontaneous Speech among Children with Autism by Harrower, Joshua Keith; Phd from University of California, Santa Barbara, 1999, 114 pages http://wwwlib.umi.com/dissertations/fullcit/9956155
·
A Comparison of Simultaneous and Most-to-least Prompting Procedures in Teaching Receptive Identification of Pictures to Toddlers with Autism by Boulware, Gusty-lee; Phd from University of Washington, 2001, 114 pages http://wwwlib.umi.com/dissertations/fullcit/3013933
·
A Comparison of Spoken Language Abilities in Children with Aphasia, Autism, Learning Disabilities, and Normal Language Abilities by Mcdonough, Dayle Davis, Phd from University of New Orleans, 1986, 162 pages http://wwwlib.umi.com/dissertations/fullcit/8625151
·
A Comparison of the Attitudes of Parents Whose Children Are Diagnosed with Autism and of Parents Whose Children Are Diagnosed with Mental Retardation by Yeager, Mark Horren, Phd from The University of Southern Mississippi, 1998, 86 pages http://wwwlib.umi.com/dissertations/fullcit/9916049
·
A Comparison of the Spontaneous Utterances of Students with Autism across Two Educational Settings by Peterson, Mary E., Edd from Western Michigan University, 1996, 163 pages http://wwwlib.umi.com/dissertations/fullcit/9639811
·
A Developmental Analysis of Joint Attention and Requesting Skills in Young Children with Autism by Paparella, Tanya; Phd from University of California, Los Angeles, 2000, 112 pages http://wwwlib.umi.com/dissertations/fullcit/9961641
·
A Functional Analysis of the Echolalic Behavior of Three Children with Autism in a Residential School Setting by Townsend, Bessie Juanita Kelsay; Phd from Mississippi State University, 2000, 87 pages http://wwwlib.umi.com/dissertations/fullcit/9970351
·
A Longitudinal Study of Cognitive, Language, and Social Competence in Adolescents and Young Adults with Autism by Williams, Corina Yvonne; Phd from University of California, Los Angeles, 2001, 112 pages http://wwwlib.umi.com/dissertations/fullcit/3005983
Dissertations 233
·
A Neuropsychological Investigation of the 'weak Central Coherence' Anomaly in Autism by Buchanan, Cathleen Paige; Phd from The Herman M. Finch U. of Health Sciences - the Chicago Medical Sch., 2001, 123 pages http://wwwlib.umi.com/dissertations/fullcit/3032527
Keeping Current As previously mentioned, an effective way to stay current on dissertations dedicated to autism is to use the database called ProQuest Digital Dissertations via the Internet, located at the following Web address: http://wwwlib.umi.com/dissertations. The site allows you to freely access the last two years of citations and abstracts. Ask your medical librarian if the library has full and unlimited access to this database. From the library, you should be able to do more complete searches than with the limited 2-year access available to the general public.
235
PART III. APPENDICES
ABOUT PART III Part III is a collection of appendices on general medical topics relating to autism and related conditions.
Researching Your Child’s Medications 237
APPENDIX A. RESEARCHING YOUR CHILD’S MEDICATIONS Overview There are a number of sources available on new or existing medications which could be prescribed to treat autism. While a number of hard copy or CD-Rom resources are available to parents and physicians for research purposes, a more flexible method is to use Internet-based databases. In this chapter, we will begin with a general overview of medications. We will then proceed to outline official recommendations on how you should view your child’s medications. You may also want to research medications that your child is currently taking for other conditions as they may interact with medications for autism. Research can give you information on the side effects, interactions, and limitations of prescription drugs used in the treatment of autism. Broadly speaking, there are two sources of information on approved medications: public sources and private sources. We will emphasize free-to-use public sources.
238 Autism
Your Child’s Medications: The Basics45 The Agency for Health Care Research and Quality has published extremely useful guidelines on the medication aspects of autism. Giving your child medication can involve many steps and decisions each day. The AHCRQ recommends that parents take part in treatment decisions. Do not be afraid to ask questions and talk about your concerns. By taking a moment to ask questions, your child may be spared from possible problems. Here are some points to cover each time a new medicine is prescribed: ·
Ask about all parts of your child’s treatment, including diet changes, exercise, and medicines.
·
Ask about the risks and benefits of each medicine or other treatment your child might receive.
·
Ask how often you or your child’s doctor will check for side effects from a given medication.
Do not hesitate to tell the doctor about preferences you have for your child’s medicines. You may want your child to have a medicine with the fewest side effects, or the fewest doses to take each day. You may care most about cost. Or, you may want the medicine the doctor believes will work the best. Sharing your concerns will help the doctor select the best treatment for your child. Do not be afraid to “bother” the doctor with your questions about medications for autism. You can also talk to a nurse or a pharmacist. They can help you better understand your child’s treatment plan. Talking over your child’s options with someone you trust can help you make better choices. Specifically, ask the doctor the following: ·
The name of the medicine and what it is supposed to do.
·
How and when to give your child the medicine, how much, and for how long.
·
What food, drinks, other medicines, or activities your child should avoid while taking the medicine.
·
What side effects your child may experience, and what to do if they occur.
·
If there are any refills, and how often.
·
About any terms or directions you do not understand.
·
What to do if your child misses a dose.
45
This section is adapted from AHCRQ: http://www.ahcpr.gov/consumer/ncpiebro.htm.
Researching Your Child’s Medications 239
·
If there is written information you can take home (most pharmacies have information sheets on prescription medicines; some even offer large-print or Spanish versions).
Do not forget to tell the doctor about all the medicines your child is currently taking (not just those for autism). This includes prescription medicines and the medicines that you buy over the counter. When talking to the doctor, you may wish to prepare a list of medicines your child is currently taking including why and in what forms. Be sure to include the following information for each: ·
Name of medicine
·
Reason taken
·
Dosage
·
Time(s) of day
Also include any over-the-counter medicines, such as: ·
Laxatives
·
Diet pills
·
Vitamins
·
Cold medicine
·
Aspirin or other pain, headache, or fever medicine
·
Cough medicine
·
Allergy relief medicine
·
Antacids
·
Sleeping pills
·
Others (include names)
Learning More about Your Child’s Medications Because of historical investments by various organizations and the emergence of the Internet, it has become rather simple to learn about the medications the doctor has recommended for autism. One such source is the United States Pharmacopeia. In 1820, eleven physicians met in Washington, D.C. to establish the first compendium of standard drugs for the United States. They called this compendium the “U.S. Pharmacopeia (USP).” Today, the USP is a non-profit organization consisting of 800 volunteer scientists, eleven elected officials, and 400 representatives of state associations and
240 Autism
colleges of medicine and pharmacy. The USP is located in Rockville, Maryland, and its home page is located at www.usp.org. The USP currently provides standards for over 3,700 medications. The resulting USP DIÒ Advice for the PatientÒ can be accessed through the National Library of Medicine of the National Institutes of Health. The database is partially derived from lists of federally approved medications in the Food and Drug Administration’s (FDA) Drug Approvals database.46 While the FDA database is rather large and difficult to navigate, the Phamacopeia is both user-friendly and free to use. It covers more than 9,000 prescription and over-the-counter medications. To access this database, simply type the following hyperlink into your Web browser: http://www.nlm.nih.gov/medlineplus/druginformation.html. To view examples of a given medication (brand names, category, description, preparation, proper use, precautions, side effects, etc.), simply follow the hyperlinks indicated within the United States Pharmacopoeia (USP). It is important to read the disclaimer by the USP (http://www.nlm.nih.gov/medlineplus/drugdisclaimer.html) before using the information provided. Of course, we as editors cannot be certain as to what medications your child is taking. Therefore, we have compiled a list of medications associated with the treatment of autism. Once again, due to space limitations, we only list a sample of medications and provide hyperlinks to ample documentation (e.g. typical dosage, side effects, drug-interaction risks, etc.). The following drugs have been mentioned in the Pharmacopeia and other sources as being potentially applicable to autism: Fluoxetine ·
Systemic - U.S. Brands: Prozac; Sarafem http://www.nlm.nih.gov/medlineplus/druginfo/fluoxetinesyste mic202247.html
Haloperidol ·
Systemic - U.S. Brands: Haldol http://www.nlm.nih.gov/medlineplus/druginfo/haloperidolsyst emic202278.html
Though cumbersome, the FDA database can be freely browsed at the following site: www.fda.gov/cder/da/da.htm.
46
Researching Your Child’s Medications 241
Sertraline ·
Systemic - U.S. Brands: Zoloft http://www.nlm.nih.gov/medlineplus/druginfo/sertralinesystem ic202651.html
Commercial Databases In addition to the medications listed in the USP above, a number of commercial sites are available by subscription to physicians and their institutions. You may be able to access these sources from your local medical library or your child’s doctor’s office.
Reuters Health Drug Database The Reuters Health Drug Database can be searched by keyword at the hyperlink: http://www.reutershealth.com/frame2/drug.html.
Mosby’s GenRx Mosby’s GenRx database (also available on CD-Rom and book format) covers 45,000 drug products including generics and international brands. It provides information on prescribing and drug interactions. Information can be obtained at http://www.genrx.com/Mosby/PhyGenRx/group.html.
Physicians Desk Reference The Physicians Desk Reference database (also available in CD-Rom and book format) is a full-text drug database. The database is searchable by brand name, generic name or by indication. It features multiple drug interactions reports. Information can be obtained at the following hyperlink: http://physician.pdr.net/physician/templates/en/acl/psuser_t.htm.
Other Web Sites A number of additional Web sites discuss drug information. As an example, you may like to look at www.drugs.com which reproduces the information in the Pharmacopeia as well as commercial information. You may also want to consider the Web site of the Medical Letter, Inc. which allows users to
242 Autism
download articles on various drugs and therapeutics for a nominal fee: http://www.medletter.com/.
Contraindications and Interactions (Hidden Dangers) Some of the medications mentioned in the previous discussions can be problematic for children with autism--not because they are used in the treatment process, but because of contraindications, or side effects. Medications with contraindications are those that could react with drugs used to treat autism or potentially create deleterious side effects in patients with autism. You should ask the physician about any contraindications, especially as these might apply to other medications that your child may be taking for common ailments. Drug-drug interactions occur when two or more drugs react with each other. This drug-drug interaction may cause your child to experience an unexpected side effect. Drug interactions may make medications less effective, cause unexpected side effects, or increase the action of a particular drug. Some drug interactions can even be harmful to your child. Be sure to read the label every time you give your child a nonprescription or prescription drug, and take the time to learn about drug interactions. These precautions may be critical to your child’s health. You can reduce the risk of potentially harmful drug interactions and side effects with a little bit of knowledge and common sense. Drug labels contain important information about ingredients, uses, warnings, and directions which you should take the time to read and understand. Labels also include warnings about possible drug interactions. Further, drug labels may change as new information becomes avaiable. This is why it’s especially important to read the label every time you give your child a medication. When the doctor prescribes a new drug, discuss all overthe-counter and prescription medications, dietary supplements, vitamins, botanicals, minerals and herbals your child takes. Ask your pharmacist for the package insert for each drug prescribed. The package insert provides more information about potential drug interactions.
A Final Warning At some point, you may hear of alternative medications from friends, relatives, or in the news media. Advertisements may suggest that certain
Researching Your Child’s Medications 243
alternative drugs can produce positive results for autism. Exercise caution-some of these drugs may have fraudulent claims, and others may actually hurt your child. The Food and Drug Administration (FDA) is the official U.S. agency charged with discovering which medications are likely to improve the health of patients with autism. The FDA warns to watch out for47: ·
Secret formulas (real scientists share what they know)
·
Amazing breakthroughs or miracle cures (real breakthroughs don’t happen very often; when they do, real scientists do not call them amazing or miracles)
·
Quick, painless, or guaranteed cures
·
If it sounds too good to be true, it probably isn’t true.
If you have any questions about any kind of medical treatment, the FDA may have an office near you. Look for their number in the blue pages of the phone book. You can also contact the FDA through its toll-free number, 1888-INFO-FDA (1-888-463-6332), or on the World Wide Web at www.fda.gov.
General References In addition to the resources provided earlier in this chapter, the following general references describe medications (sorted alphabetically by title; hyperlinks provide rankings, information and reviews at Amazon.com): · Current Therapy in Neurologic Disease by Richard T. Johnson, et al; Hardcover - 457 pages, 6th edition (January 15, 2002), Mosby-Year Book; ISBN: 0323014720; http://www.amazon.com/exec/obidos/ASIN/0323014720/icongroupinterna · Emerging Pharmacological Tools in Clinical Neurology by MedPanel Inc. (Author); Digital - 66 pages, MarketResearch.com; ISBN: B00005RBN8; http://www.amazon.com/exec/obidos/ASIN/B00005RBN8/icongroupinter na · Goodman & Gilman’s The Pharmacological Basis of Therapeutics by Joel G. Hardman (Editor), Lee E. Limbird; Hardcover - 1825 pages, 10th edition (August 13, 2001), McGraw-Hill Professional Publishing; ISBN: 0071354697; http://www.amazon.com/exec/obidos/ASIN/0071354697/icongroupinterna
This section has been adapted from http://www.fda.gov/opacom/lowlit/medfraud.html.
47
244 Autism
· Neurology and General Medicine by Michael J. Aminoff (Editor), Hardcover - 992 pages, 3rd edition (March 15, 2001), Churchill Livingstone; ISBN: 0443065713; http://www.amazon.com/exec/obidos/ASIN/0443065713/icongroupinterna · Neurology and Medicine by Hughes Perkins; Hardcover - 415 pages, 1st edition (December 15, 1999), B. M. J. Books; ISBN: 0727912240; http://www.amazon.com/exec/obidos/ASIN/0727912240/icongroupinterna · Pharmacological Management of Neurological and Psychiatric Disorders by S. J. Enna (Editor), et al; Hardcover - 736 pages, 1st edition, McGrawHill Professional Publishing; ISBN: 0070217645; http://www.amazon.com/exec/obidos/ASIN/0070217645/icongroupinterna
Vocabulary Builder The following vocabulary builder gives definitions of words used in this chapter that have not been defined in previous chapters: Sertraline: A selective serotonin uptake inhibitor that is used in the treatment of depression. [NIH] Systemic: Pertaining to or affecting the body as a whole. [EU]
Researching Alternative Medicine 245
APPENDIX B. RESEARCHING ALTERNATIVE MEDICINE Overview Complementary and alternative medicine (CAM) is one of the most contentious aspects of modern medical practice. You may have heard of these treatments on the radio or on television. Maybe you have seen articles written about these treatments in magazines, newspapers, or books. Perhaps your child’s doctor or your friends have mentioned alternatives. In this chapter, we will begin by giving you a broad perspective on complementary and alternative therapies. Next, we will introduce you to official information sources on CAM relating to autism. Finally, at the conclusion of this chapter, we will provide a list of readings on autism from various authors. We will begin, however, with the National Center for Complementary and Alternative Medicine’s (NCCAM) overview of complementary and alternative medicine.
246 Autism
What Is CAM?48 Complementary and alternative medicine (CAM) covers a broad range of healing philosophies, approaches, and therapies. Generally, it is defined as those treatments and healthcare practices which are not taught in medical schools, used in hospitals, or reimbursed by medical insurance companies. Many CAM therapies are termed “holistic,” which generally means that the healthcare practitioner considers the whole person, including physical, mental, emotional, and spiritual health. Some of these therapies are also known as “preventive,” which means that the practitioner educates and treats the person to prevent health problems from arising, rather than treating symptoms after problems have occurred. People use CAM treatments and therapies in a variety of ways. Therapies are used alone (often referred to as alternative), in combination with other alternative therapies, or in addition to conventional treatment (sometimes referred to as complementary). Complementary and alternative medicine, or “integrative medicine,” includes a broad range of healing philosophies, approaches, and therapies. Some approaches are consistent with physiological principles of Western medicine, while others constitute healing systems with non-Western origins. While some therapies are far outside the realm of accepted Western medical theory and practice, others are becoming established in mainstream medicine. Complementary and alternative therapies are used in an effort to prevent illness, reduce stress, prevent or reduce side effects and symptoms, or control or cure disease. Some commonly used methods of complementary or alternative therapy include mind/body control interventions such as visualization and relaxation, manual healing including acupressure and massage, homeopathy, vitamins or herbal products, and acupuncture.
What Are the Domains of Alternative Medicine?49 The list of CAM practices changes continually. The reason being is that these new practices and therapies are often proved to be safe and effective, and therefore become generally accepted as “mainstream” healthcare practices. Today, CAM practices may be grouped within five major domains: (1) alternative medical systems, (2) mind-body interventions, (3) biologicallybased treatments, (4) manipulative and body-based methods, and (5) energy 48 49
Adapted from the NCCAM: http://nccam.nih.gov/nccam/fcp/faq/index.html#what-is. Adapted from the NCCAM: http://nccam.nih.gov/nccam/fcp/classify/index.html.
Researching Alternative Medicine 247
therapies. The individual systems and treatments comprising these categories are too numerous to list in this sourcebook. Thus, only limited examples are provided within each. Alternative Medical Systems Alternative medical systems involve complete systems of theory and practice that have evolved independent of, and often prior to, conventional biomedical approaches. Many are traditional systems of medicine that are practiced by individual cultures throughout the world, including a number of venerable Asian approaches. Traditional oriental medicine emphasizes the balance or disturbances of qi (pronounced chi) or vital energy in health and illness, respectively. Traditional oriental medicine consists of a group of techniques and methods including acupuncture, herbal medicine, oriental massage, and qi gong (a form of energy therapy). Acupuncture involves stimulating specific anatomic points in the body for therapeutic purposes, usually by puncturing the skin with a thin needle. Ayurveda is India’s traditional system of medicine. Ayurvedic medicine (meaning “science of life”) is a comprehensive system of medicine that places equal emphasis on body, mind, and spirit. Ayurveda strives to restore the innate harmony of the individual. Some of the primary Ayurvedic treatments include diet, exercise, meditation, herbs, massage, exposure to sunlight, and controlled breathing. Other traditional healing systems have been developed by the world’s indigenous populations. These populations include Native American, Aboriginal, African, Middle Eastern, Tibetan, and Central and South American cultures. Homeopathy and naturopathy are also examples of complete alternative medicine systems. Homeopathic medicine is an unconventional Western system that is based on the principle that “like cures like,” i.e., that the same substance that in large doses produces the symptoms of an illness, in very minute doses cures it. Homeopathic health practitioners believe that the more dilute the remedy, the greater its potency. Therefore, they use small doses of specially prepared plant extracts and minerals to stimulate the body’s defense mechanisms and healing processes in order to treat illness.
248 Autism
Naturopathic medicine is based on the theory that a medical condition is the manifestation of alterations in the processes by which the body naturally heals itself and emphasizes health restoration rather than treatment for the condition itself. Naturopathic physicians employ an array of healing practices, including the following: diet and clinical nutrition, homeopathy, acupuncture, herbal medicine, hydrotherapy (the use of water in a range of temperatures and methods of applications), spinal and soft-tissue manipulation, physical therapies (such as those involving electrical currents, ultrasound, and light), therapeutic counseling, and pharmacology.
Mind-Body Interventions Mind-body interventions employ a variety of techniques designed to facilitate the mind’s capacity to affect bodily function and symptoms. Only a select group of mind-body interventions having well-documented theoretical foundations are considered CAM. For example, patient education and cognitive-behavioral approaches are now considered “mainstream.” On the other hand, complementary and alternative medicine includes meditation, certain uses of hypnosis, dance, music, and art therapy, as well as prayer and mental healing. Biological-Based Therapies This category of CAM includes natural and biological-based practices, interventions, and products, many of which overlap with conventional medicine’s use of dietary supplements. This category includes herbal, special dietary, orthomolecular, and individual biological therapies. Herbal therapy employs an individual herb or a mixture of herbs for healing purposes. An herb is a plant or plant part that produces and contains chemical substances that act upon the body. Special diet therapies, such as those proposed by Drs. Atkins, Ornish, Pritikin, and Weil, are believed to prevent and/or control illness as well as promote health. Orthomolecular therapies aim to treat medical conditions with varying concentrations of chemicals such as magnesium, melatonin, and mega-doses of vitamins. Biological therapies include, for example, the use of laetrile and shark cartilage to treat cancer and the use of bee pollen to treat autoimmune and inflammatory conditions.
Researching Alternative Medicine 249
Manipulative and Body-Based Methods This category includes methods that are based on manipulation and/or movement of the body. For example, chiropractors focus on the relationship between structure and function, primarily pertaining to the spine, and how that relationship affects the preservation and restoration of health. Chiropractors use manipulative therapy as an integral treatment tool. In contrast, osteopaths place particular emphasis on the musculoskeletal system and practice osteopathic manipulation. Osteopaths believe that all of the body’s systems work together and that disturbances in one system may have an impact upon function elsewhere in the body. Massage therapists manipulate the soft tissues of the body to normalize those tissues. Energy Therapies Energy therapies focus on energy fields originating within the body (biofields) or those from other sources (electromagnetic fields). Biofield therapies are intended to affect energy fields (the existence of which is not yet experimentally proven) that surround and penetrate the human body. Some forms of energy therapy manipulate biofields by applying pressure and/or manipulating the body by placing the hands in or through these fields. Examples include Qi gong, Reiki and Therapeutic Touch. Qi gong is a component of traditional oriental medicine that combines movement, meditation, and regulation of breathing to enhance the flow of vital energy (qi) in the body, improve blood circulation, and enhance immune function. Reiki, the Japanese word representing Universal Life Energy, is based on the belief that, by channeling spiritual energy through the practitioner, the spirit is healed and, in turn, heals the physical body. Therapeutic Touch is derived from the ancient technique of “laying-on of hands.” It is based on the premises that the therapist’s healing force affects recovery and that healing is promoted when the body’s energies are in balance. By passing their hands over the patient, these healers identify energy imbalances. Bioelectromagnetic-based therapies involve the unconventional use of electromagnetic fields to treat illnesses or manage pain. These therapies are often used to treat asthma, cancer, and migraine headaches. Types of electromagnetic fields which are manipulated in these therapies include pulsed fields, magnetic fields, and alternating current or direct current fields.
250 Autism
Can Alternatives Affect My Child’s Treatment? A critical issue in pursuing complementary alternatives mentioned thus far is the risk that these might have undesirable interactions with your child’s medical treatment. It becomes all the more important to speak with the doctor who can offer advice on the use of alternatives. Official sources confirm this view. Though written for women, we find that the National Women’s Health Information Center’s advice on pursuing alternative medicine is appropriate for everyone.50 Is It Okay to Want Both Traditional and Alternative or Complementary Medicine? Should you wish to explore non-traditional types of treatment, be sure to discuss all issues concerning treatments and therapies with your child’s healthcare provider, whether a physician or practitioner of complementary and alternative medicine. Competent healthcare management requires that the practitioner know of all conventional and alternative therapies that your child is taking. The decision to use complementary and alternative treatments is an important one. Consider before selecting an alternative therapy, the safety and effectiveness of the therapy or treatment, the expertise and qualifications of the healthcare practitioner, and the quality of delivery. These topics should be considered when selecting any practitioner or therapy.
Finding CAM References on Autism Having read the previous discussion, you may be wondering which complementary or alternative treatments might be appropriate for autism. For the remainder of this chapter, we will direct you to a number of official sources which can assist you in researching studies and publications. Some of these articles are rather technical, so some patience may be required.
National Center for Complementary and Alternative Medicine The National Center for Complementary and Alternative Medicine (NCCAM) of the National Institutes of Health (http://nccam.nih.gov) has 50
Adapted from http://www.4woman.gov/faq/alternative.htm.
Researching Alternative Medicine 251
created a link to the National Library of Medicine’s databases to allow parents to search for articles that specifically relate to autism and complementary medicine. To search the database, go to the following Web site: www.nlm.nih.gov/nccam/camonpubmed.html. Select “CAM on PubMed.” Enter “autism” (or synonyms) into the search box. Click “Go.” The following references provide information on particular aspects of complementary and alternative medicine (CAM) that are related to autism: ·
Alcohol, deafness, epilepsy, and autism. Author(s): Gordon AG. Source: Alcoholism, Clinical and Experimental Research. 1993 August; 17(4): 926-8. No Abstract Available. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=8214437&dopt=Abstract
·
An animal model of autism: behavioural studies in the GS guinea-pig. Author(s): Caston J, Yon E, Mellier D, Godfrey HP, Delhaye-bouchaud N, Mariani J. Source: The European Journal of Neuroscience. 1998 August; 10(8): 267784. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=9767397&dopt=Abstract
·
An electrophysiologic indication of auditory processing defects in autism. Author(s): Novick B, Vaughan HG Jr, Kurtzberg D, Simson R. Source: Psychiatry Research. 1980 September; 3(1): 107-14. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=6934552&dopt=Abstract
·
An electrophysiologic indication of defective information storage in childhood autism. Author(s): Novick B, Kurtzberg D, Vaughn HG Jr. Source: Psychiatry Research. 1979 July; 1(1): 101-8. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=298335&dopt=Abstract
·
Are children with autism superior at folk physics? Author(s): Baron-Cohen S.
252 Autism
Source: New Dir Child Dev. 1997 Spring; (75): 45-54. No Abstract Available. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=9306745&dopt=Abstract ·
Auditory associative cortex dysfunction in children with autism: evidence from late auditory evoked potentials (N1 wave-T complex). Author(s): Bruneau N, Roux S, Adrien JL, Barthelemy C. Source: Clinical Neurophysiology : Official Journal of the International Federation of Clinical Neurophysiology. 1999 November; 110(11): 192734. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=10576489&dopt=Abstract
·
Auditory brainstem responses in autism: brainstem dysfunction or peripheral hearing loss? Author(s): Klin A. Source: Journal of Autism and Developmental Disorders. 1993 March; 23(1): 15-35. Review. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=8463195&dopt=Abstract
·
Auditory integration training for children with autism: no behavioral benefits detected. Author(s): Mudford OC, Cross BA, Breen S, Cullen C, Reeves D, Gould J, Douglas J. Source: American Journal of Mental Retardation : Ajmr. 2000 March; 105(2): 118-29. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=10755175&dopt=Abstract
·
Auditory processing abilities in non-retarded adolescents and young adults with developmental receptive language disorder and autism. Author(s): Lincoln AJ, Dickstein P, Courchesne E, Elmasian R, Tallal P. Source: Brain and Language. 1992 November; 43(4): 613-22. No Abstract Available. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=1483193&dopt=Abstract
·
Autism AKA communication disorder. Author(s): Greenspan SI.
Researching Alternative Medicine 253
Source: Journal of the American Academy of Child and Adolescent Psychiatry. 1993 January; 32(1): 221-2. No Abstract Available. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=7679094&dopt=Abstract ·
Autism and the immune system. Author(s): van Gent T, Heijnen CJ, Treffers PD. Source: Journal of Child Psychology and Psychiatry, and Allied Disciplines. 1997 March; 38(3): 337-49. Review. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=9232480&dopt=Abstract
·
Autism as a neurodevelopmental disorder affecting communication and learning in early childhood: prenatal origins, post-natal course and effective educational support. Author(s): Trevarthen C. Source: Prostaglandins, Leukotrienes, and Essential Fatty Acids. 2000 July-August; 63(1-2): 41-6. Review. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=10970712&dopt=Abstract
·
Autism from the inside. Author(s): White BB, White MS. Source: Medical Hypotheses. 1987 November; 24(3): 223-9. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=3696026&dopt=Abstract
·
Autism in young children: an update. Author(s): Mays RM, Gillon JE. Source: Journal of Pediatric Health Care : Official Publication of National Association of Pediatric Nurse Associates & Practitioners. 1993 JanuaryFebruary; 7(1): 17-23. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=8421239&dopt=Abstract
·
Autism revisited. Author(s): Schechter MD, Shurley JT, Toussieng PW, Maier WJ. Source: J Okla State Med Assoc. 1970 July; 63(7): 297-300. No Abstract Available. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=5515622&dopt=Abstract
254 Autism
·
Autism: time for a national approach to early assessment and management. Author(s): Sampson AJ, Hale LG. Source: The Medical Journal of Australia. 1997 April 21; 166(8): 443; Discussion 443, 446. No Abstract Available. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=9140353&dopt=Abstract
·
Behavioral and magnetic resonance spectroscopic studies in the rat hyperserotonemic model of autism. Author(s): Kahne D, Tudorica A, Borella A, Shapiro L, Johnstone F, Huang W, Whitaker-Azmitia PM. Source: Physiology & Behavior. 2002 March; 75(3): 403-10. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=11897268&dopt=Abstract
·
Behavioural techniques to reduce self-injurious behaviour in children with autism. Author(s): Howlin P. Source: Acta Paedopsychiatr. 1993; 56(2): 75-84. Review. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=8135115&dopt=Abstract
·
Brief report: a pilot study of auditory integration training in autism. Author(s): Rimland B, Edelson SM. Source: Journal of Autism and Developmental Disorders. 1995 February; 25(1): 61-70. No Abstract Available. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=7608035&dopt=Abstract
·
Brief report: alternative approaches to the development of effective treatments for autism. Author(s): Rimland B, Baker SM. Source: Journal of Autism and Developmental Disorders. 1996 April; 26(2): 237-41. Review. No Abstract Available. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=8744492&dopt=Abstract
·
Brief report: improvements in the behavior of children with autism following massage therapy. Author(s): Escalona A, Field T, Singer-Strunck R, Cullen C, Hartshorn K.
Researching Alternative Medicine 255
Source: Journal of Autism and Developmental Disorders. 2001 October; 31(5): 513-6. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=11794416&dopt=Abstract ·
Brief report: musical interaction therapy for children with autism: an evaluative case study with two-year follow-up. Author(s): Wimpory D, Chadwick P, Nash S. Source: Journal of Autism and Developmental Disorders. 1995 October; 25(5): 541-52. No Abstract Available. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=8567598&dopt=Abstract
·
Domain specificity in conceptual development: neuropsychological evidence from autism. Author(s): Leslie AM, Thaiss L. Source: Cognition. 1992 June; 43(3): 225-51. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=1643814&dopt=Abstract
·
Early environmental stress and infantile autism. Author(s): Harper J, Williams S. Source: The Medical Journal of Australia. 1974 March 9; 1(10): 341-6. No Abstract Available. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=4825826&dopt=Abstract
·
Early infantile autism and receptor processes. Author(s): Schopler E. Source: Archives of General Psychiatry. 1965 October; 13(4): 327-35. Review. No Abstract Available. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=5318111&dopt=Abstract
·
Early infantile autism: diagnosis, etiology, and treatment. Author(s): Ward AJ. Source: Psychol Bull. 1970 May; 73(5): 350-62. No Abstract Available. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=4097056&dopt=Abstract
·
Effects of sociodramatic play training on children with autism. Author(s): Thorp DM, Stahmer AC, Schreibman L.
256 Autism
Source: Journal of Autism and Developmental Disorders. 1995 June; 25(3): 265-82. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=7559292&dopt=Abstract ·
Effects of synthetic speech output and orthographic feedback on spelling in a student with autism: a preliminary study. Author(s): Schlosser RW, Blischak DM, Belfiore PJ, Bartley C, Barnett N. Source: Journal of Autism and Developmental Disorders. 1998 August; 28(4): 309-19. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=9711487&dopt=Abstract
·
Efficacy of vitamin B6 and magnesium in the treatment of autism: a methodology review and summary of outcomes. Author(s): Pfeiffer SI, Norton J, Nelson L, Shott S. Source: Journal of Autism and Developmental Disorders. 1995 October; 25(5): 481-93. Review. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=8567594&dopt=Abstract
·
Event-related potentials in cross-modal divided attention in autism. Author(s): Ciesielski KT, Knight JE, Prince RJ, Harris RJ, Handmaker SD. Source: Neuropsychologia. 1995 February; 33(2): 225-46. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=7746366&dopt=Abstract
·
High dose vitamin B6 and magnesium in treating autism: response to study by Findling et al. Author(s): Rimland B. Source: Journal of Autism and Developmental Disorders. 1998 December; 28(6): 581-2. No Abstract Available. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=9932247&dopt=Abstract
·
Homeopathic Secretin in autism: a clinical pilot study. Author(s): Robinson TW. Source: The British Homoeopathic Journal. 2001 April; 90(2): 86-91. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=11341462&dopt=Abstract
Researching Alternative Medicine 257
·
I, you, me, and autism: an experimental study. Author(s): Lee A, Hobson RP, Chiat S. Source: Journal of Autism and Developmental Disorders. 1994 April; 24(2): 155-76. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=8040159&dopt=Abstract
·
Increasing complex social behaviors in children with autism: effects of peer-implemented pivotal response training. Author(s): Pierce K, Schreibman L. Source: J Appl Behav Anal. 1995 Fall; 28(3): 285-95. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=7592145&dopt=Abstract
·
Is asperger syndrome/high-functioning autism necessarily a disability? Author(s): Baron-Cohen S. Source: Development and Psychopathology. 2000 Summer; 12(3): 489-500. Review. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=11014749&dopt=Abstract
·
Memory deficits in early infantile autism: some similarities to the amnesic syndrome. Author(s): Boucher J, Warrington EK. Source: The British Journal of Psychology. 1976 February; 67(1): 73-87. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=1268453&dopt=Abstract
·
Multiple peer use of pivotal response training to increase social behaviors of classmates with autism: results from trained and untrained peers. Author(s): Pierce K, Schreibman L. Source: J Appl Behav Anal. 1997 Spring; 30(1): 157-60. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=9103991&dopt=Abstract
·
Normal P50 gating in children with autism. Author(s): Kemner C, Oranje B, Verbaten MN, van EH. Source: J Clin Psychiatry. 2002 March; 63(3): 214-7. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=11926720&dopt=Abstract
258 Autism
·
'Obsessions' in children with autism or Asperger syndrome. Content analysis in terms of core domains of cognition. Author(s): Baron-Cohen S, Wheelwright S. Source: The British Journal of Psychiatry; the Journal of Mental Science. 1999 November; 175: 484-90. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=10789283&dopt=Abstract
·
Ontogenic development of EEG-asymmetry in early infantile autism. Author(s): Ogawa T, Sugiyama A, Ishiwa S, Suzuki M, Ishihara T, Sato K. Source: Brain & Development. 1982; 4(6): 439-49. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=7168481&dopt=Abstract
·
Participation of children with autism and nondisabled peers in a cooperatively structured community art program. Author(s): Schleien SJ, Mustonen T, Rynders JE. Source: Journal of Autism and Developmental Disorders. 1995 August; 25(4): 397-413. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=7592251&dopt=Abstract
·
Perceptual inconstancy in early infantile autism. The syndrome of early infant autism and its variants including certain cases of childhood schizophrenia. Author(s): Ornitz EM, Ritvo ER. Source: Archives of General Psychiatry. 1968 January; 18(1): 76-98. No Abstract Available. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=4169269&dopt=Abstract
·
Quantified multidimensional assessment of autism and other pervasive developmental disorders. Application for bioclinical research. Author(s): Hameury L, Roux S, Barthelemy C, Adrien JL, Desombre H, Sauvage D, Garreau B, Lelord G. Source: European Child & Adolescent Psychiatry. 1995 April; 4(2): 123-35. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=7796250&dopt=Abstract
·
Reapproaching Mahler: new perspectives on normal autism, symbiosis, splitting and libidinal object constancy from cognitive developmental
Researching Alternative Medicine 259
theory. Author(s): Gergely G. Source: J Am Psychoanal Assoc. 2000; 48(4): 1197-228. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=11212188&dopt=Abstract ·
Role taking and social competence in autism and mental retardation. Author(s): Oswald DP, Ollendick TH. Source: Journal of Autism and Developmental Disorders. 1989 March; 19(1): 119-27. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=2708295&dopt=Abstract
·
Sleep disorder in children with autism. Author(s): Taira M, Takase M, Sasaki H. Source: Psychiatry and Clinical Neurosciences. 1998 April; 52(2): 182-3. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=9628139&dopt=Abstract
·
Social-cognitive abilities in children with lesser variants of autism: skill deficits or failure to apply skills? Author(s): Serra M, Minderaa RB, van Geert PL, Jackson AE. Source: European Child & Adolescent Psychiatry. 1999 December; 8(4): 301-11. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=10654124&dopt=Abstract
·
Startle modulation studies in autism. Author(s): Ornitz EM, Lane SJ, Sugiyama T, de Traversay J. Source: Journal of Autism and Developmental Disorders. 1993 December; 23(4): 619-37. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=8106303&dopt=Abstract
·
Teaching children with autism to initiate to peers: effects of a scriptfading procedure. Author(s): Krantz PJ, McClannahan LE. Source: J Appl Behav Anal. 1993 Spring; 26(1): 121-32. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=8473251&dopt=Abstract
260 Autism
·
The biological significance of gaze aversion with particular reference to the syndrome of infantile autism. Author(s): Hutt C, Ounsted C. Source: Behavioral Science. 1966 September; 11(5): 346-56. No Abstract Available. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=5970485&dopt=Abstract
Additional Web Resources A number of additional Web sites offer encyclopedic information covering CAM and related topics. The following is a representative sample: ·
Alternative Medicine Foundation, Inc.: http://www.herbmed.org/
·
AOL: http://search.aol.com/cat.adp?id=169&layer=&from=subcats
·
Chinese Medicine: http://www.newcenturynutrition.com/
·
drkoop.comÒ: http://www.drkoop.com/InteractiveMedicine/IndexC.html
·
Family Village: http://www.familyvillage.wisc.edu/med_altn.htm
·
Google: http://directory.google.com/Top/Health/Alternative/
·
Healthnotes: http://www.thedacare.org/healthnotes/
·
Open Directory Project: http://dmoz.org/Health/Alternative/
·
TPN.com: http://www.tnp.com/
·
Yahoo.com: http://dir.yahoo.com/Health/Alternative_Medicine/
·
WebMDÒHealth: http://my.webmd.com/drugs_and_herbs
·
WellNet: http://www.wellnet.ca/herbsa-c.htm
·
WholeHealthMD.com: http://www.wholehealthmd.com/reflib/0,1529,,00.html
The following is a specific Web list relating to Autism; please note that any particular subject below may indicate either a therapeutic use, or a contraindication (potential danger), and does not reflect an official recommendation:
Researching Alternative Medicine 261
·
General Overview Autism Source: Healthnotes, Inc.; www.healthnotes.com Hyperlink: http://www.thedacare.org/healthnotes/Concern/Autism.htm Rubella Source: Integrative Medicine Communications; www.onemedicine.com Hyperlink: http://www.drkoop.com/interactivemedicine/ConsConditions/Rub ellacc.html
·
Alternative Therapy Autism Alternative names: infantile autism Source: The Canoe version of A Dictionary of Alternative-Medicine Methods, by Priorities for Health editor Jack Raso, M.S., R.D. Hyperlink: http://www.canoe.ca/AltmedDictionary/a.html Facilitated communication Alternative names: FC Facilitated Communication therapy facilitated communication training [FCT] Source: The Canoe version of A Dictionary of Alternative-Medicine Methods, by Priorities for Health editor Jack Raso, M.S., R.D. Hyperlink: http://www.canoe.ca/AltmedDictionary/f.html Massage Source: Integrative Medicine Communications; www.onemedicine.com Hyperlink: http://www.drkoop.com/interactivemedicine/ConsModalities/Mas sagecm.html
262 Autism
·
Herbs and Supplements Melatonin Source: Integrative Medicine Communications; www.onemedicine.com Hyperlink: http://www.drkoop.com/interactivemedicine/ConsSupplements/M elatonincs.html
General References A good place to find general background information on CAM is the National Library of Medicine. It has prepared within the MEDLINEplus system an information topic page dedicated to complementary and alternative medicine. To access this page, go to the MEDLINEplus site at: www.nlm.nih.gov/medlineplus/alternativemedicine.html. This Web site provides a general overview of various topics and can lead to a number of general sources. The following additional references describe, in broad terms, alternative and complementary medicine (sorted alphabetically by title; hyperlinks provide rankings, information, and reviews at Amazon.com): · Alternative and Complementary Treatment in Neurologic Illness by Michael I. Weintraub (Editor); Paperback - 288 pages (March 23, 2001), Churchill Livingstone; ISBN: 0443065586; http://www.amazon.com/exec/obidos/ASIN/0443065586/icongroupinterna · Healthy Child, Whole Child: Integrating the Best of Conventional and Alternative Medicine to Keep Your Kids Healthy by Stuart H. Ditchek, M.D. and Russell H. Greenfield; Paperback - 464 pages (June 2002), Harper Resource; ISBN: 0062737465; http://www.amazon.com/exec/obidos/ASIN/0062737465/icongroupinterna · Radical Healing: Integrating the World’s Great Therapeutic Traditions to Create a New Transformative Medicine by Rudolph Ballentine, M.D., Linda Funk (Illustrator); Paperback - 612 pages; Reprint edition (March 14, 2000), Three Rivers Press; ISBN: 0609804847; http://www.amazon.com/exec/obidos/ASIN/0609804847/icongroupinterna ·
The Review of Natural Products by Facts and Comparisons (Editor); CdRom edition (January 2002), Facts & Comparisons; ISBN: 1574391453; http://www.amazon.com/exec/obidos/ASIN/1574391453/icongroupinterna
Researching Alternative Medicine 263
For additional information on complementary and alternative medicine, ask your child’s doctor or write to: National Institutes of Health National Center for Complementary and Alternative Medicine Clearinghouse P. O. Box 8218 Silver Spring, MD 20907-8218
Researching Nutrition 265
APPENDIX C. RESEARCHING NUTRITION Overview Since the time of Hippocrates, doctors have understood the importance of diet and nutrition to health and well-being. Since then, they have accumulated an impressive archive of studies and knowledge dedicated to this subject. Based on their experience, doctors and healthcare providers may recommend particular dietary supplements for autism. Any dietary recommendation is based on age, body mass, gender, lifestyle, eating habits, food preferences, and health condition. It is therefore likely that different patients with autism may be given different recommendations. Some recommendations may be directly related to autism, while others may be more related to general health. In this chapter we will begin by briefly reviewing the essentials of diet and nutrition that will broadly frame more detailed discussions of autism. We will then show you how to find studies dedicated specifically to nutrition and autism.
266 Autism
Food and Nutrition: General Principles What Are Essential Foods? Food is generally viewed by official sources as consisting of six basic elements: (1) fluids, (2) carbohydrates, (3) protein, (4) fats, (5) vitamins, and (6) minerals. Consuming a combination of these elements is considered to be a healthy diet: ·
Fluids are essential to human life as 80-percent of the body is composed of water. Water is lost via urination, sweating, diarrhea, vomiting, diuretics (drugs that increase urination), caffeine, and physical exertion.
·
Carbohydrates are the main source for human energy (thermoregulation) and the bulk of typical diets. They are mostly classified as being either simple or complex. Simple carbohydrates include sugars which are often consumed in the form of cookies, candies, or cakes. Complex carbohydrates consist of starches and dietary fibers. Starches are consumed in the form of pastas, breads, potatoes, rice, and other foods. Soluble fibers can be eaten in the form of certain vegetables, fruits, oats, and legumes. Insoluble fibers include brown rice, whole grains, certain fruits, wheat bran and legumes.
·
Proteins are eaten to build and repair human tissues. Some foods that are high in protein are also high in fat and calories. Food sources for protein include nuts, meat, fish, cheese, and other dairy products.
·
Fats are consumed for both energy and the absorption of certain vitamins. There are many types of fats, with many general publications recommending the intake of unsaturated fats or those low in cholesterol.
Vitamins and minerals are fundamental to human health, growth, and, in some cases, disease prevention. Most are consumed in your child’s diet (exceptions being vitamins K and D which are produced by intestinal bacteria and sunlight on the skin, respectively). Each vitamin and mineral plays a different role in health. The following outlines essential vitamins: ·
Vitamin A is important to the health of eyes, hair, bones, and skin; sources of vitamin A include foods such as eggs, carrots, and cantaloupe.
·
Vitamin B1, also known as thiamine, is important for the nervous system and energy production; food sources for thiamine include meat, peas, fortified cereals, bread, and whole grains.
·
Vitamin B2, also known as riboflavin, is important for the nervous system and muscles, but is also involved in the release of proteins from
Researching Nutrition 267
nutrients; food sources for riboflavin include dairy products, leafy vegetables, meat, and eggs. ·
Vitamin B3, also known as niacin, is important for healthy skin and helps the body use energy; food sources for niacin include peas, peanuts, fish, and whole grains
·
Vitamin B6, also known as pyridoxine, is important for the regulation of cells in the nervous system and is vital for blood formation; food sources for pyridoxine include bananas, whole grains, meat, and fish.
·
Vitamin B12 is vital for a healthy nervous system and for the growth of red blood cells in bone marrow; food sources for vitamin B12 include yeast, milk, fish, eggs, and meat.
·
Vitamin C allows the body’s immune system to fight various medical conditions, strengthens body tissue, and improves the body’s use of iron; food sources for vitamin C include a wide variety of fruits and vegetables.
·
Vitamin D helps the body absorb calcium which strengthens bones and teeth; food sources for vitamin D include oily fish and dairy products.
·
Vitamin E can help protect certain organs and tissues from various degenerative diseases; food sources for vitamin E include margarine, vegetables, eggs, and fish.
·
Vitamin K is essential for bone formation and blood clotting; common food sources for vitamin K include leafy green vegetables.
·
Folic Acid maintains healthy cells and blood; food sources for folic acid include nuts, fortified breads, leafy green vegetables, and whole grains.
It should be noted that one can overdose on certain vitamins which become toxic if consumed in excess (e.g. vitamin A, D, E and K). Like vitamins, minerals are chemicals that are required by the body to remain in good health. Because the human body does not manufacture these chemicals internally, we obtain them from food and other dietary sources. The more important minerals include: ·
Calcium is needed for healthy bones, teeth, and muscles, but also helps the nervous system function; food sources for calcium include dry beans, peas, eggs, and dairy products.
·
Chromium is helpful in regulating sugar levels in blood; food sources for chromium include egg yolks, raw sugar, cheese, nuts, beets, whole grains, and meat.
268 Autism
·
Fluoride is used by the body to help prevent tooth decay and to reinforce bone strength; sources of fluoride include drinking water and certain brands of toothpaste.
·
Iodine helps regulate the body’s use of energy by synthesizing into the hormone thyroxine; food sources include leafy green vegetables, nuts, egg yolks, and red meat.
·
Iron helps maintain muscles and the formation of red blood cells and certain proteins; food sources for iron include meat, dairy products, eggs, and leafy green vegetables.
·
Magnesium is important for the production of DNA, as well as for healthy teeth, bones, muscles, and nerves; food sources for magnesium include dried fruit, dark green vegetables, nuts, and seafood.
·
Phosphorous is used by the body to work with calcium to form bones and teeth; food sources for phosphorous include eggs, meat, cereals, and dairy products.
·
Selenium primarily helps maintain normal heart and liver functions; food sources for selenium include wholegrain cereals, fish, meat, and dairy products.
·
Zinc helps wounds heal, the formation of sperm, and encourage rapid growth and energy; food sources include dried beans, shellfish, eggs, and nuts.
The United States government periodically publishes recommended diets and consumption levels of the various elements of food. Again, the doctor may encourage deviations from the average official recommendation based on your child’s specific condition. To learn more about basic dietary guidelines, visit the Web site: http://www.health.gov/dietaryguidelines/. Based on these guidelines, many foods are required to list the nutrition levels on the food’s packaging. Labeling Requirements are listed at the following site maintained by the Food and Drug Administration: http://www.cfsan.fda.gov/~dms/lab-cons.html. When interpreting these requirements, the government recommends that consumers become familiar with the following abbreviations before reading FDA literature:51 ·
DVs (Daily Values): A new dietary reference term that will appear on the food label. It is made up of two sets of references, DRVs and RDIs.
·
DRVs (Daily Reference Values): A set of dietary references that applies to fat, saturated fat, cholesterol, carbohydrate, protein, fiber, sodium, and potassium.
51
Adapted from the FDA: http://www.fda.gov/fdac/special/foodlabel/dvs.html.
Researching Nutrition 269
·
RDIs (Reference Daily Intakes): A set of dietary references based on the Recommended Dietary Allowances for essential vitamins and minerals and, in selected groups, protein. The name “RDI” replaces the term “U.S. RDA.”
·
RDAs (Recommended Dietary Allowances): A set of estimated nutrient allowances established by the National Academy of Sciences. It is updated periodically to reflect current scientific knowledge.
What Are Dietary Supplements?52 Dietary supplements are widely available through many commercial sources, including health food stores, grocery stores, pharmacies, and by mail. Dietary supplements are provided in many forms including tablets, capsules, powders, gel-tabs, extracts, and liquids. Historically in the United States, the most prevalent type of dietary supplement was a multivitamin/mineral tablet or capsule that was available in pharmacies, either by prescription or “over the counter.” Supplements containing strictly herbal preparations were less widely available. Currently in the United States, a wide array of supplement products are available, including vitamin, mineral, other nutrients, and botanical supplements as well as ingredients and extracts of animal and plant origin. The Office of Dietary Supplements (ODS) of the National Institutes of Health is the official agency of the United States which has the expressed goal of acquiring “new knowledge to help prevent, detect, diagnose, and treat disease and disability, from the rarest genetic disorder to the common cold.”53 According to the ODS, dietary supplements can have an important impact on the prevention and management of medical conditions and on the maintenance of health.54 The ODS notes that considerable research on the effects of dietary supplements has been conducted in Asia and Europe where This discussion has been adapted from the NIH: http://ods.od.nih.gov/whatare/whatare.html. 53 Contact: The Office of Dietary Supplements, National Institutes of Health, Building 31, Room 1B29, 31 Center Drive, MSC 2086, Bethesda, Maryland 20892-2086, Tel: (301) 435-2920, Fax: (301) 480-1845, E-mail:
[email protected]. 54 Adapted from http://ods.od.nih.gov/about/about.html. The Dietary Supplement Health and Education Act defines dietary supplements as “a product (other than tobacco) intended to supplement the diet that bears or contains one or more of the following dietary ingredients: a vitamin, mineral, amino acid, herb or other botanical; or a dietary substance for use to supplement the diet by increasing the total dietary intake; or a concentrate, metabolite, constituent, extract, or combination of any ingredient described above; and intended for ingestion in the form of a capsule, powder, softgel, or gelcap, and not represented as a conventional food or as a sole item of a meal or the diet.” 52
270 Autism
the use of plant products, in particular, has a long tradition. However, the overwhelming majority of supplements have not been studied scientifically. To explore the role of dietary supplements in the improvement of health care, the ODS plans, organizes, and supports conferences, workshops, and symposia on scientific topics related to dietary supplements. The ODS often works in conjunction with other NIH Institutes and Centers, other government agencies, professional organizations, and public advocacy groups. To learn more about official information on dietary supplements, visit the ODS site at http://ods.od.nih.gov/whatare/whatare.html. Or contact: The Office of Dietary Supplements National Institutes of Health Building 31, Room 1B29 31 Center Drive, MSC 2086 Bethesda, Maryland 20892-2086 Tel: (301) 435-2920 Fax: (301) 480-1845 E-mail:
[email protected]
Finding Studies on Autism The NIH maintains an office dedicated to nutrition and diet. The National Institutes of Health’s Office of Dietary Supplements (ODS) offers a searchable bibliographic database called the IBIDS (International Bibliographic Information on Dietary Supplements). The IBIDS contains over 460,000 scientific citations and summaries about dietary supplements and nutrition as well as references to published international, scientific literature on dietary supplements such as vitamins, minerals, and botanicals.55 IBIDS is available to the public free of charge through the ODS Internet page: http://ods.od.nih.gov/databases/ibids.html. After entering the search area, you have three choices: (1) IBIDS Consumer Database, (2) Full IBIDS Database, or (3) Peer Reviewed Citations Only. We recommend that you start with the Consumer Database. While you may not find references for the topics that are of most interest to you, check back Adapted from http://ods.od.nih.gov. IBIDS is produced by the Office of Dietary Supplements (ODS) at the National Institutes of Health to assist the public, healthcare providers, educators, and researchers in locating credible, scientific information on dietary supplements. IBIDS was developed and will be maintained through an interagency partnership with the Food and Nutrition Information Center of the National Agricultural Library, U.S. Department of Agriculture.
55
Researching Nutrition 271
periodically as this database is frequently updated. More studies can be found by searching the Full IBIDS Database. Healthcare professionals and researchers generally use the third option, which lists peer-reviewed citations. In all cases, we suggest that you take advantage of the “Advanced Search” option that allows you to retrieve up to 100 fully explained references in a comprehensive format. Type “autism” (or synonyms) into the search box. To narrow the search, you can also select the “Title” field. The following information is typical of that found when using the “Full IBIDS Database” when searching using “autism” (or a synonym): ·
A balanced approach towards healthy eating in autism. Author(s): Senior Community Dietitian, Community Health Services, NHS Trust, Southern Derbyshire, Wilderslowe, 121 Osmaston Road, Derby DE1 2GA (United Kingdom) Source: Cornish, E. Journal-of-Human-Nutrition-and-Dietetics (United Kingdom). (1998). volume 11(6) page 501-509. children mankind vitamins nutritional status body measurements nutrients trace elements mineral nutrients feeding habits nervous system diseases diet ascorbic acid iron vitamin d nicotinamide riboflavin pyridoxine calcium zinc Summary: enfant genre humain vitamine etat nutritionnel mensuration corporelle substance nutritive oligoelement substance nutritive minerale comportement alimentaire trouble du systeme nerveux regime alimentaire acide ascorbique fer vitamine d nicotinamide riboflavine pyridoxine calcium zinc
Additional physician-oriented references include: ·
A 15-year follow-up of a boy with pyridoxine (vitamin B6)-dependent seizures with autism, breath holding, and severe mental retardation. Author(s): Department of Pediatrics, School of Medicine and Health Sciences, University of North Dakota, Grand Forks, USA.
[email protected] Source: Burd, L Stenehjem, A Franceschini, L A Kerbeshian, J J-ChildNeurol. 2000 November; 15(11): 763-5 0883-0738
·
A case report of naltrexone treatment of self-injury and social withdrawal in autism. Author(s): Brown University Program in Medicine, Emma Pendleton Bradley Hospital, East Providence, Rhode Island 02915. Source: Walters, A S Barrett, R P Feinstein, C Mercurio, A Hole, W T JAutism-Dev-Disord. 1990 June; 20(2): 169-76 0162-3257
272 Autism
·
A controlled trial with ORG 2766, an ACTH-(4-9) analog, in 50 relatively able children with autism. Author(s): Department of Child and Adolescent Psychiatry, University of Utrecht, Netherlands. Source: Buitelaar, J K Dekker, M E van Ree, J M van Engeland, H EurNeuropsychopharmacol. 1996 March; 6(1): 13-9 0924-977X
·
A double-blind, placebo-controlled crossover study investigating the effect of porcine secretin in children with autism. Author(s): Department of Pediatrics, Divisions of Pediatric Neurology, University of Minnesota, Minneapolis, MN, USA. Source: Corbett, B Khan, K Czapansky Beilman, D Brady, N Dropik, P Goldman, D Z Delaney, K Sharp, H Mueller, I Shapiro, E Ziegler, R ClinPediatr-(Phila). 2001 June; 40(6): 327-31 0009-9228
·
A male with fetal valproate syndrome and autism. Author(s): University of Louisville School of Medicine, Child Evaluation Center, Kentucky 40202-3828, USA. Source: Williams, P G Hersh, J H Dev-Med-Child-Neurol. 1997 September; 39(9): 632-4 0012-1622
·
A novel biochemical model linking dysfunctions in brain melatonin, proopiomelanocortin peptides, and serotonin in autism. Author(s): Brain Research Center, Children's National Medical Center, Washington, D.C. 20010. Source: Chamberlain, R S Herman, B H Biol-Psychiatry. 1990 November 1; 28(9): 773-93 0006-3223
·
A preliminary trial of ascorbic acid as supplemental therapy for autism. Author(s): Department of Psychiatry, University of Alabama at Birmingham. Source: Dolske, M C Spollen, J McKay, S Lancashire, E Tolbert, L ProgNeuropsychopharmacol-Biol-Psychiatry. 1993 September; 17(5): 765-74 0278-5846
·
A randomized, double-blind, placebo-controlled trial of single-dose intravenous secretin as treatment for children with autism. Author(s): Division of Developmental Pediatrics, The Marcus Institute at Emory University, Atlanta, Georgia, USA. Source: Coniglio, S J Lewis, J D Lang, C Burns, T G Subhani Siddique, R Weintraub, A Schub, H Holden, E W J-Pediatr. 2001 May; 138(5): 649-55 0022-3476
·
Abnormal intestinal permeability in children with autism. Author(s): Institute of Pediatrics, La Sapienza University of Rome, Italy.
Researching Nutrition 273
Source: D'Eufemia, P Celli, M Finocchiaro, R Pacifico, L Viozzi, L Zaccagnini, M Cardi, E Giardini, O Acta-Paediatr. 1996 September; 85(9): 1076-9 0803-5253 ·
Amisulpride versus bromocriptine in infantile autism: a controlled crossover comparative study of two drugs with opposite effects on dopaminergic function. Author(s): University of Rouen, Department of Psychiatry. Source: Dollfus, S Petit, M Menard, J F Lesieur, P J-Autism-Dev-Disord. 1992 March; 22(1): 47-60 0162-3257
·
An assessment of food acceptance in children with autism or pervasive developmental disorder-not otherwise specified. Author(s): The New England Center for Children, Southboro, MA 017722108, USA.
[email protected] Source: Ahearn, W H Castine, T Nault, K Green, G J-Autism-Dev-Disord. 2001 October; 31(5): 505-11 0162-3257
·
An enzyme/brain-barrier theory of psychiatric pathogenesis: unifying observations on phenylketonuria, autism, schizophrenia and postpartum psychosis. Author(s): Department of General Practice, University of Oslo, Blindern, Norway. Source: Seim, A R Reichelt, K L Med-Hypotheses. 1995 November; 45(5): 498-502 0306-9877
·
An open trial of divalproex sodium in autism spectrum disorders. Author(s): Department of Psychiatry and Seaver Autism Research Center, Mt. Sinai School of Medicine, New York, NY 10029-6574, USA.
[email protected] Source: Hollander, E Dolgoff Kaspar, R Cartwright, C Rawitt, R Novotny, S J-Clin-Psychiatry. 2001 July; 62(7): 530-4 0160-6689
·
Application of genomeceuticals to the molecular and immunological aspects of autism. Author(s): MAK Wood Inc., Thiensville, Wisconsin 53024, USA.
[email protected] Source: Brudnak, M A Med-Hypotheses. 2001 August; 57(2): 186-91 03069877
·
Auditory integration training and facilitated communication for autism. American Academy of Pediatrics. Committee on Children with Disabilities. Source: Anonymous Pediatrics. 1998 August; 102(2 Pt 1): 431-3 0031-4005
274 Autism
·
Auditory integration training for children with autism: no behavioral benefits detected. Author(s): Keele University, Staffordshire, England.
[email protected] Source: Mudford, O C Cross, B A Breen, S Cullen, C Reeves, D Gould, J Douglas, J Am-J-Ment-Retard. 2000 March; 105(2): 118-29 0895-8017
·
Autism in tuberous sclerosis complex is related to both cortical and subcortical dysfunction. Author(s): Department of Pediatrics, Children's Hospital of Michigan, Wayne State University, Detroit 48201, USA. Source: Asano, E Chugani, D C Muzik, O Behen, M Janisse, J Rothermel, R Mangner, T J Chakraborty, P K Chugani, H T Neurology. 2001 October 9; 57(7): 1269-77 0028-3878
·
Autism: electroencephalogram abnormalities and clinical improvement with valproic acid. Author(s): Division of Neurology, Mercy Hospital and Medical Center, Chicago, IL 60616. Source: Plioplys, A V Arch-Pediatr-Adolesc-Med. 1994 February; 148(2): 220-2 1072-4710
·
Behavioral medicine treatment of ruminative vomiting and associated weight loss in an adolescent with autism. Author(s): Psychological & Educational Resource Associates, Concord, Massachusetts 01742. Source: Luiselli, J K Medeiros, J Jasinowski, C Smith, A Cameron, M J JAutism-Dev-Disord. 1994 October; 24(5): 619-29 0162-3257
Federal Resources on Nutrition In addition to the IBIDS, the United States Department of Health and Human Services (HHS) and the United States Department of Agriculture (USDA) provide many sources of information on general nutrition and health. Recommended resources include: ·
healthfinder®, HHS’s gateway to health information, including diet and nutrition: http://www.healthfinder.gov/scripts/SearchContext.asp?topic=238&page=0
·
The United States Department of Agriculture’s Web site dedicated to nutrition information: www.nutrition.gov
·
The Food and Drug Administration’s Web site for federal food safety information: www.foodsafety.gov
Researching Nutrition 275
·
The National Action Plan on Overweight and Obesity sponsored by the United States Surgeon General: http://www.surgeongeneral.gov/topics/obesity/
·
The Center for Food Safety and Applied Nutrition has an Internet site sponsored by the Food and Drug Administration and the Department of Health and Human Services: http://vm.cfsan.fda.gov/
·
Center for Nutrition Policy and Promotion sponsored by the United States Department of Agriculture: http://www.usda.gov/cnpp/
·
Food and Nutrition Information Center, National Agricultural Library sponsored by the United States Department of Agriculture: http://www.nal.usda.gov/fnic/
·
Food and Nutrition Service sponsored by the United States Department of Agriculture: http://www.fns.usda.gov/fns/
Additional Web Resources A number of additional Web sites offer encyclopedic information covering food and nutrition. The following is a representative sample: ·
AOL: http://search.aol.com/cat.adp?id=174&layer=&from=subcats
·
Family Village: http://www.familyvillage.wisc.edu/med_nutrition.html
·
Google: http://directory.google.com/Top/Health/Nutrition/
·
Healthnotes: http://www.thedacare.org/healthnotes/
·
Open Directory Project: http://dmoz.org/Health/Nutrition/
·
Yahoo.com: http://dir.yahoo.com/Health/Nutrition/
·
WebMDÒHealth: http://my.webmd.com/nutrition
·
WholeHealthMD.com: http://www.wholehealthmd.com/reflib/0,1529,,00.html
The following is a specific Web list relating to Autism; please note that any particular subject below may indicate either a therapeutic use, or a contraindication (potential danger), and does not reflect an official recommendation:
276 Autism
·
Vitamins Vitamin B6 Source: Healthnotes, Inc.; www.healthnotes.com Hyperlink: http://www.thedacare.org/healthnotes/Supp/Vitamin_B6.htm Vitamin B6 Source: Prima Communications, Inc. Hyperlink: http://www.personalhealthzone.com/pg000225.html Vitamin C Source: Healthnotes, Inc.; www.healthnotes.com Hyperlink: http://www.thedacare.org/healthnotes/Supp/Vitamin_C.htm
·
Minerals Magnesium Source: Healthnotes, Inc.; www.healthnotes.com Hyperlink: http://www.thedacare.org/healthnotes/Supp/Magnesium.htm Magnesium Source: Prima Communications, Inc. Hyperlink: http://www.personalhealthzone.com/pg000202.html
Vocabulary Builder Bacteria: Unicellular prokaryotic microorganisms which generally possess rigid cell walls, multiply by cell division, and exhibit three principal forms: round or coccal, rodlike or bacillary, and spiral or spirochetal. [NIH] Bromocriptine: A semisynthetic ergot alkaloid that is a dopamine D2 agonist. It suppresses prolactin secretion and is used to treat amenorrhea, galactorrhea, and female infertility, and has been proposed for Parkinson disease. [NIH] Carbohydrate: An aldehyde or ketone derivative of a polyhydric alcohol, particularly of the pentahydric and hexahydric alcohols. They are so named because the hydrogen and oxygen are usually in the proportion to form water, (CH2O)n. The most important carbohydrates are the starches, sugars,
Researching Nutrition 277
celluloses, and gums. They are classified into mono-, di-, tri-, poly- and heterosaccharides. [EU] Degenerative: Undergoing degeneration : tending to degenerate; having the character of or involving degeneration; causing or tending to cause degeneration. [EU] Diarrhea: Passage of excessively liquid or excessively frequent stools. [NIH] Iodine: A nonmetallic element of the halogen group that is represented by the atomic symbol I, atomic number 53, and atomic weight of 126.90. It is a nutritionally essential element, especially important in thyroid hormone synthesis. In solution, it has anti-infective properties and is used topically. [NIH]
Naltrexone: Derivative of noroxymorphone that is the N-cyclopropylmethyl congener of naloxone. It is a narcotic antagonist that is effective orally, longer lasting and more potent than naloxone, and has been proposed for the treatment of heroin addiction. The FDA has approved naltrexone for the treatment of alcohol dependence. [NIH] Niacin: Water-soluble vitamin of the B complex occurring in various animal and plant tissues. Required by the body for the formation of coenzymes NAD and NADP. Has pellagra-curative, vasodilating, and antilipemic properties. [NIH] Oligoelement: A chemical substance, minute amounts of which can be found in living organisms. [EU] Potassium: An element that is in the alkali group of metals. It has an atomic symbol K, atomic number 19, and atomic weight 39.10. It is the chief cation in the intracellular fluid of muscle and other cells. Potassium ion is a strong electrolyte and it plays a significant role in the regulation of fluid volume and maintenance of the water-electrolyte balance. [NIH] Riboflavin: Nutritional factor found in milk, eggs, malted barley, liver, kidney, heart, and leafy vegetables. The richest natural source is yeast. It occurs in the free form only in the retina of the eye, in whey, and in urine; its principal forms in tissues and cells are as FMN and FAD. [NIH] Selenium: An element with the atomic symbol Se, atomic number 34, and atomic weight 78.96. It is an essential micronutrient for mammals and other animals but is toxic in large amounts. Selenium protects intracellular structures against oxidative damage. It is an essential component of glutathione peroxidase. [NIH] Thyroxine: An amino acid of the thyroid gland which exerts a stimulating effect on thyroid metabolism. [NIH]
Finding Medical Libraries 279
APPENDIX D. FINDING MEDICAL LIBRARIES Overview At a medical library you can find medical texts and reference books, consumer health publications, specialty newspapers and magazines, as well as medical journals. In this Appendix, we show you how to quickly find a medical library in your area.
Preparation Before going to the library, highlight the references mentioned in this sourcebook that you find interesting. Focus on those items that are not available via the Internet, and ask the reference librarian for help with your search. He or she may know of additional resources that could be helpful to you. Most importantly, your local public library and medical libraries have Interlibrary Loan programs with the National Library of Medicine (NLM), one of the largest medical collections in the world. According to the NLM, most of the literature in the general and historical collections of the National Library of Medicine is available on interlibrary loan to any library. NLM’s interlibrary loan services are only available to libraries. If you would like to access NLM medical literature, then visit a library in your area that can request the publications for you.56
56
Adapted from the NLM: http://www.nlm.nih.gov/psd/cas/interlibrary.html.
280 Autism
Finding a Local Medical Library The quickest method to locate medical libraries is to use the Internet-based directory published by the National Network of Libraries of Medicine (NN/LM). This network includes 4626 members and affiliates that provide many services to librarians, health professionals, and the public. To find a library in your area, simply visit http://nnlm.gov/members/adv.html or call 1-800-338-7657.
Medical Libraries Open to the Public In addition to the NN/LM, the National Library of Medicine (NLM) lists a number of libraries that are generally open to the public and have reference facilities. The following is the NLM’s list plus hyperlinks to each library Web site. These Web pages can provide information on hours of operation and other restrictions. The list below is a small sample of libraries recommended by the National Library of Medicine (sorted alphabetically by name of the U.S. state or Canadian province where the library is located):57 ·
Alabama: Health InfoNet of Jefferson County (Jefferson County Library Cooperative, Lister Hill Library of the Health Sciences), http://www.uab.edu/infonet/
·
Alabama: Richard M. Scrushy Library (American Sports Medicine Institute), http://www.asmi.org/LIBRARY.HTM
·
Arizona: Samaritan Regional Medical Center: The Learning Center (Samaritan Health System, Phoenix, Arizona), http://www.samaritan.edu/library/bannerlibs.htm
·
California: Kris Kelly Health Information Center (St. Joseph Health System), http://www.humboldt1.com/~kkhic/index.html
·
California: Community Health Library of Los Gatos (Community Health Library of Los Gatos), http://www.healthlib.org/orgresources.html
·
California: Consumer Health Program and Services (CHIPS) (County of Los Angeles Public Library, Los Angeles County Harbor-UCLA Medical Center Library) - Carson, CA, http://www.colapublib.org/services/chips.html
·
California: Gateway Health Library (Sutter Gould Medical Foundation)
·
California: Health Library (Stanford University Medical Center), http://www-med.stanford.edu/healthlibrary/
57
Abstracted from http://www.nlm.nih.gov/medlineplus/libraries.html.
Finding Medical Libraries 281
·
California: Patient Education Resource Center - Health Information and Resources (University of California, San Francisco), http://sfghdean.ucsf.edu/barnett/PERC/default.asp
·
California: Redwood Health Library (Petaluma Health Care District), http://www.phcd.org/rdwdlib.html
·
California: San José PlaneTree Health Library, http://planetreesanjose.org/
·
California: Sutter Resource Library (Sutter Hospitals Foundation), http://go.sutterhealth.org/comm/resc-library/sac-resources.html
·
California: University of California, Davis. Health Sciences Libraries
·
California: ValleyCare Health Library & Ryan Comer Cancer Resource Center (ValleyCare Health System), http://www.valleycare.com/library.html
·
California: Washington Community Health Resource Library (Washington Community Health Resource Library), http://www.healthlibrary.org/
·
Colorado: William V. Gervasini Memorial Library (Exempla Healthcare), http://www.exempla.org/conslib.htm
·
Connecticut: Hartford Hospital Health Science Libraries (Hartford Hospital), http://www.harthosp.org/library/
·
Connecticut: Healthnet: Connecticut Consumer Health Information Center (University of Connecticut Health Center, Lyman Maynard Stowe Library), http://library.uchc.edu/departm/hnet/
·
Connecticut: Waterbury Hospital Health Center Library (Waterbury Hospital), http://www.waterburyhospital.com/library/consumer.shtml
·
Delaware: Consumer Health Library (Christiana Care Health System, Eugene du Pont Preventive Medicine & Rehabilitation Institute), http://www.christianacare.org/health_guide/health_guide_pmri_health _info.cfm
·
Delaware: Lewis B. Flinn Library (Delaware Academy of Medicine), http://www.delamed.org/chls.html
·
Georgia: Family Resource Library (Medical College of Georgia), http://cmc.mcg.edu/kids_families/fam_resources/fam_res_lib/frl.htm
·
Georgia: Health Resource Center (Medical Center of Central Georgia), http://www.mccg.org/hrc/hrchome.asp
·
Hawaii: Hawaii Medical Library: Consumer Health Information Service (Hawaii Medical Library), http://hml.org/CHIS/
282 Autism
·
Idaho: DeArmond Consumer Health Library (Kootenai Medical Center), http://www.nicon.org/DeArmond/index.htm
·
Illinois: Health Learning Center of Northwestern Memorial Hospital (Northwestern Memorial Hospital, Health Learning Center), http://www.nmh.org/health_info/hlc.html
·
Illinois: Medical Library (OSF Saint Francis Medical Center), http://www.osfsaintfrancis.org/general/library/
·
Kentucky: Medical Library - Services for Patients, Families, Students & the Public (Central Baptist Hospital), http://www.centralbap.com/education/community/library.htm
·
Kentucky: University of Kentucky - Health Information Library (University of Kentucky, Chandler Medical Center, Health Information Library), http://www.mc.uky.edu/PatientEd/
·
Louisiana: Alton Ochsner Medical Foundation Library (Alton Ochsner Medical Foundation), http://www.ochsner.org/library/
·
Louisiana: Louisiana State University Health Sciences Center Medical Library-Shreveport, http://lib-sh.lsuhsc.edu/
·
Maine: Franklin Memorial Hospital Medical Library (Franklin Memorial Hospital), http://www.fchn.org/fmh/lib.htm
·
Maine: Gerrish-True Health Sciences Library (Central Maine Medical Center), http://www.cmmc.org/library/library.html
·
Maine: Hadley Parrot Health Science Library (Eastern Maine Healthcare), http://www.emh.org/hll/hpl/guide.htm
·
Maine: Maine Medical Center Library (Maine Medical Center), http://www.mmc.org/library/
·
Maine: Parkview Hospital, http://www.parkviewhospital.org/communit.htm#Library
·
Maine: Southern Maine Medical Center Health Sciences Library (Southern Maine Medical Center), http://www.smmc.org/services/service.php3?choice=10
·
Maine: Stephens Memorial Hospital Health Information Library (Western Maine Health), http://www.wmhcc.com/hil_frame.html
·
Manitoba, Canada: Consumer & Patient Health Information Service (University of Manitoba Libraries), http://www.umanitoba.ca/libraries/units/health/reference/chis.html
·
Manitoba, Canada: J.W. Crane Memorial Library (Deer Lodge Centre), http://www.deerlodge.mb.ca/library/libraryservices.shtml
Finding Medical Libraries 283
·
Maryland: Health Information Center at the Wheaton Regional Library (Montgomery County, Md., Dept. of Public Libraries, Wheaton Regional Library), http://www.mont.lib.md.us/healthinfo/hic.asp
·
Massachusetts: Baystate Medical Center Library (Baystate Health System), http://www.baystatehealth.com/1024/
·
Massachusetts: Boston University Medical Center Alumni Medical Library (Boston University Medical Center), http://medlibwww.bu.edu/library/lib.html
·
Massachusetts: Lowell General Hospital Health Sciences Library (Lowell General Hospital), http://www.lowellgeneral.org/library/HomePageLinks/WWW.htm
·
Massachusetts: Paul E. Woodard Health Sciences Library (New England Baptist Hospital), http://www.nebh.org/health_lib.asp
·
Massachusetts: St. Luke’s Hospital Health Sciences Library (St. Luke’s Hospital), http://www.southcoast.org/library/
·
Massachusetts: Treadwell Library Consumer Health Reference Center (Massachusetts General Hospital), http://www.mgh.harvard.edu/library/chrcindex.html
·
Massachusetts: UMass HealthNet (University of Massachusetts Medical School), http://healthnet.umassmed.edu/
·
Michigan: Botsford General Hospital Library - Consumer Health (Botsford General Hospital, Library & Internet Services), http://www.botsfordlibrary.org/consumer.htm
·
Michigan: Helen DeRoy Medical Library (Providence Hospital and Medical Centers), http://www.providence-hospital.org/library/
·
Michigan: Marquette General Hospital - Consumer Health Library (Marquette General Hospital, Health Information Center), http://www.mgh.org/center.html
·
Michigan: Patient Education Resouce Center - University of Michigan Cancer Center (University of Michigan Comprehensive Cancer Center), http://www.cancer.med.umich.edu/learn/leares.htm
·
Michigan: Sladen Library & Center for Health Information Resources Consumer Health Information, http://www.sladen.hfhs.org/library/consumer/index.html
·
Montana: Center for Health Information (St. Patrick Hospital and Health Sciences Center), http://www.saintpatrick.org/chi/librarydetail.php3?ID=41
284 Autism
·
National: Consumer Health Library Directory (Medical Library Association, Consumer and Patient Health Information Section), http://caphis.mlanet.org/directory/index.html
·
National: National Network of Libraries of Medicine (National Library of Medicine) - provides library services for health professionals in the United States who do not have access to a medical library, http://nnlm.gov/
·
National: NN/LM List of Libraries Serving the Public (National Network of Libraries of Medicine), http://nnlm.gov/members/
·
Nevada: Health Science Library, West Charleston Library (Las Vegas Clark County Library District), http://www.lvccld.org/special_collections/medical/index.htm
·
New Hampshire: Dartmouth Biomedical Libraries (Dartmouth College Library), http://www.dartmouth.edu/~biomed/resources.htmld/conshealth.htmld/
·
New Jersey: Consumer Health Library (Rahway Hospital), http://www.rahwayhospital.com/library.htm
·
New Jersey: Dr. Walter Phillips Health Sciences Library (Englewood Hospital and Medical Center), http://www.englewoodhospital.com/links/index.htm
·
New Jersey: Meland Foundation (Englewood Hospital and Medical Center), http://www.geocities.com/ResearchTriangle/9360/
·
New York: Choices in Health Information (New York Public Library) NLM Consumer Pilot Project participant, http://www.nypl.org/branch/health/links.html
·
New York: Health Information Center (Upstate Medical University, State University of New York), http://www.upstate.edu/library/hic/
·
New York: Health Sciences Library (Long Island Jewish Medical Center), http://www.lij.edu/library/library.html
·
New York: ViaHealth Medical Library (Rochester General Hospital), http://www.nyam.org/library/
·
Ohio: Consumer Health Library (Akron General Medical Center, Medical & Consumer Health Library), http://www.akrongeneral.org/hwlibrary.htm
·
Oklahoma: Saint Francis Health System Patient/Family Resource Center (Saint Francis Health System), http://www.sfhtulsa.com/patientfamilycenter/default.asp
Finding Medical Libraries 285
·
Oregon: Planetree Health Resource Center (Mid-Columbia Medical Center), http://www.mcmc.net/phrc/
·
Pennsylvania: Community Health Information Library (Milton S. Hershey Medical Center), http://www.hmc.psu.edu/commhealth/
·
Pennsylvania: Community Health Resource Library (Geisinger Medical Center), http://www.geisinger.edu/education/commlib.shtml
·
Pennsylvania: HealthInfo Library (Moses Taylor Hospital), http://www.mth.org/healthwellness.html
·
Pennsylvania: Hopwood Library (University of Pittsburgh, Health Sciences Library System), http://www.hsls.pitt.edu/chi/hhrcinfo.html
·
Pennsylvania: Koop Community Health Information Center (College of Physicians of Philadelphia), http://www.collphyphil.org/kooppg1.shtml
·
Pennsylvania: Learning Resources Center - Medical Library (Susquehanna Health System), http://www.shscares.org/services/lrc/index.asp
·
Pennsylvania: Medical Library (UPMC Health System), http://www.upmc.edu/passavant/library.htm
·
Quebec, Canada: Medical Library (Montreal General Hospital), http://ww2.mcgill.ca/mghlib/
·
South Dakota: Rapid City Regional Hospital - Health Information Center (Rapid City Regional Hospital, Health Information Center), http://www.rcrh.org/education/LibraryResourcesConsumers.htm
·
Texas: Houston HealthWays (Houston Academy of Medicine-Texas Medical Center Library), http://hhw.library.tmc.edu/
·
Texas: Matustik Family Resource Center (Cook Children’s Health Care System), http://www.cookchildrens.com/Matustik_Library.html
·
Washington: Community Health Library (Kittitas Valley Community Hospital), http://www.kvch.com/
·
Washington: Southwest Washington Medical Center Library (Southwest Washington Medical Center), http://www.swmedctr.com/Home/
Your Child’s Rights and Insurance 287
APPENDIX E. YOUR CHILD’S RIGHTS AND INSURANCE Overview Parents face a series of issues related more to the healthcare industry than to their children’s medical conditions. This appendix covers two important topics in this regard: your responsibilities and your child’s rights as a patient, and how to get the most out of your child’s medical insurance plan.
Your Child’s Rights as a Patient The President’s Advisory Commission on Consumer Protection and Quality in the Healthcare Industry has created the following summary of your child’s rights as a patient.58 Information Disclosure Consumers have the right to receive accurate, easily understood information. Some consumers require assistance in making informed decisions about health plans, health professionals, and healthcare facilities. Such information includes: ·
Health plans. Covered benefits, cost-sharing, and procedures for resolving complaints, licensure, certification, and accreditation status, comparable measures of quality and consumer satisfaction, provider network composition, the procedures that govern access to specialists and emergency services, and care management information.
58Adapted
from Consumer Bill of Rights and Responsibilities: http://www.hcqualitycommission.gov/press/cbor.html#head1.
288 Autism
·
Health professionals. Education, board certification, and recertification, years of practice, experience performing certain procedures, and comparable measures of quality and consumer satisfaction.
·
Healthcare facilities. Experience in performing certain procedures and services, accreditation status, comparable measures of quality, worker, and consumer satisfaction, and procedures for resolving complaints.
·
Consumer assistance programs. Programs must be carefully structured to promote consumer confidence and to work cooperatively with health plans, providers, payers, and regulators. Desirable characteristics of such programs are sponsorship that ensures accountability to the interests of consumers and stable, adequate funding.
Choice of Providers and Plans Consumers have the right to a choice of healthcare providers that is sufficient to ensure access to appropriate high-quality healthcare. To ensure such choice, the Commission recommends the following: ·
Provider network adequacy. All health plan networks should provide access to sufficient numbers and types of providers to assure that all covered services will be accessible without unreasonable delay -including access to emergency services 24 hours a day and 7 days a week. If a health plan has an insufficient number or type of providers to provide a covered benefit with the appropriate degree of specialization, the plan should ensure that the consumer obtains the benefit outside the network at no greater cost than if the benefit were obtained from participating providers.
·
Access to specialists. Consumers with complex or serious medical conditions who require frequent specialty care should have direct access to a qualified specialist of their choice within a plan’s network of providers. Authorizations, when required, should be for an adequate number of direct access visits under an approved treatment plan.
·
Transitional care. Consumers who are undergoing a course of treatment for a chronic or disabling condition at the time they involuntarily change health plans or at a time when a provider is terminated by a plan for other than cause should be able to continue seeing their current specialty providers for up to 90 days to allow for transition of care.
·
Choice of health plans. Public and private group purchasers should, wherever feasible, offer consumers a choice of high-quality health insurance plans.
Your Child’s Rights and Insurance 289
Access to Emergency Services Consumers have the right to access emergency healthcare services when and where the need arises. Health plans should provide payment when a consumer presents to an emergency department with acute symptoms of sufficient severity--including severe pain--such that a “prudent layperson” could reasonably expect the absence of medical attention to result in placing that consumer’s health in serious jeopardy, serious impairment to bodily functions, or serious dysfunction of any bodily organ or part.
Participation in Treatment Decisions Consumers have the right and responsibility to fully participate in all decisions related to their healthcare. Consumers who are unable to fully participate in treatment decisions have the right to be represented by parents, guardians, family members, or other conservators. Physicians and other health professionals should: ·
Provide parents with sufficient information and opportunity to decide among treatment options consistent with the informed consent process.
·
Discuss all treatment options with a parent in a culturally competent manner, including the option of no treatment at all.
·
Ensure that persons with disabilities have effective communications with members of the health system in making such decisions.
·
Discuss all current treatments a consumer may be undergoing.
·
Discuss all risks, nontreatment.
·
Give parents the opportunity to refuse treatment for their children and to express preferences about future treatment decisions.
·
Discuss the use of advance directives -- both living wills and durable powers of attorney for healthcare -- with parents.
·
Abide by the decisions made by parents consistent with the informed consent process.
benefits,
and
consequences
to
treatment
or
290 Autism
Health plans, health providers, and healthcare facilities should: ·
Disclose to consumers factors -- such as methods of compensation, ownership of or interest in healthcare facilities, or matters of conscience -that could influence advice or treatment decisions.
·
Assure that provider contracts do not contain any so-called “gag clauses” or other contractual mechanisms that restrict healthcare providers’ ability to communicate with and advise parents about medically necessary treatment options for their children.
·
Be prohibited from penalizing or seeking retribution against healthcare professionals or other health workers for advocating on behalf of their patients. Respect and Nondiscrimination
Consumers have the right to considerate, respectful care from all members of the healthcare industry at all times and under all circumstances. An environment of mutual respect is essential to maintain a quality healthcare system. To assure that right, the Commission recommends the following: ·
Consumers must not be discriminated against in the delivery of healthcare services consistent with the benefits covered in their policy, or as required by law, based on race, ethnicity, national origin, religion, sex, age, mental or physical disability, sexual orientation, genetic information, or source of payment.
·
Consumers eligible for coverage under the terms and conditions of a health plan or program, or as required by law, must not be discriminated against in marketing and enrollment practices based on race, ethnicity, national origin, religion, sex, age, mental or physical disability, sexual orientation, genetic information, or source of payment.
Confidentiality of Health Information Consumers have the right to communicate with healthcare providers in confidence and to have the confidentiality of their individually identifiable healthcare information protected. Consumers also have the right to review and copy their own medical records and request amendments to their records.
Your Child’s Rights and Insurance 291
Complaints and Appeals Consumers have the right to a fair and efficient process for resolving differences with their health plans, healthcare providers, and the institutions that serve them, including a rigorous system of internal review and an independent system of external review. A free copy of the Patient’s Bill of Rights is available from the American Hospital Association.59
Parent Responsibilities To underscore the importance of finance in modern healthcare as well as your responsibility for the financial aspects of your child’s care, the President’s Advisory Commission on Consumer Protection and Quality in the Healthcare Industry has proposed that parents understand the following “Consumer Responsibilities.”60 In a healthcare system that protects consumers’ rights, it is reasonable to expect and encourage consumers to assume certain responsibilities. Greater involvement by parents in their children’s care increases the likelihood of achieving the best outcome and helps support a quality-oriented, cost-conscious environment. Such responsibilities include: ·
Take responsibility for maximizing your child’s healthy habits.
·
Work collaboratively with healthcare providers in developing and carrying out your child’s agreed-upon treatment plans.
·
Disclose relevant information and clearly communicate wants and needs.
·
Use the insurance company’s internal complaint and appeal processes to address your concerns.
·
Recognize the reality of risks, the limits of the medical science, and the human fallibility of the healthcare professional.
·
Be aware of a healthcare provider’s obligation to be reasonably efficient and equitable in providing care to the community.
·
Become knowledgeable about health plan coverage and options (when available) including all covered benefits, limitations, and exclusions, rules regarding use of network providers, coverage and referral rules,
To order your free copy of the Patient’s Bill of Rights, telephone 312-422-3000 or visit the American Hospital Association’s Web site: http://www.aha.org. Click on “Resource Center,” go to “Search” at bottom of page, and then type in “Patient’s Bill of Rights.” The Patient’s Bill of Rights is also available from Fax on Demand, at 312-422-2020, document number 471124. 60 Adapted from http://www.hcqualitycommission.gov/press/cbor.html#head1. 59
292 Autism
appropriate processes to secure additional information, and the process to appeal coverage decisions. ·
Make a good-faith effort to meet financial obligations.
·
Abide by administrative and operational procedures of health plans, healthcare providers, and Government health benefit programs.
Choosing an Insurance Plan There are a number of official government agencies that help consumers understand their healthcare insurance choices.61 The U.S. Department of Labor, in particular, recommends ten ways to make your health benefits choices work best for your family.62 1. Your options are important. There are many different types of health benefit plans. Find out which one your employer offers, then check out the plan, or plans, offered. Your employer’s human resource office, the health plan administrator, or your union can provide information to help you match your family’s needs and preferences with the available plans. The more information you have, the better your healthcare decisions will be. 2. Reviewing the benefits available. Do the plans offered cover preventive care, well-baby care, vision or dental care? Are there deductibles? Answers to these questions can help determine the out-of-pocket expenses you may face. Cheapest may not always be best. Your goal is high quality health benefits. 3. Look for quality. The quality of healthcare services varies, but quality can be measured. You should consider the quality of healthcare in deciding among the healthcare plans or options available to your family. Not all health plans, doctors, hospitals and other providers give the highest quality care. Fortunately, there is quality information you can use right now to help you compare your healthcare choices. Find out how you can measure quality. Consult the U.S. Department of Health and Human Services publication “Your Guide to Choosing Quality Health Care” on the Internet at www.ahcpr.gov/consumer.
More information about quality across programs is provided at the following AHRQ Web site: http://www.ahrq.gov/consumer/qntascii/qnthplan.htm. 62 Adapted from the Department of Labor: http://www.dol.gov/dol/pwba/public/pubs/health/top10-text.html. 61
Your Child’s Rights and Insurance 293
4. Your plan’s summary plan description (SPD) provides a wealth of information. Your health plan administrator can provide you with a copy of your plan’s SPD. It outlines your family’s benefits and your legal rights under the Employee Retirement Income Security Act (ERISA), the federal law that protects your family’s health benefits. It should contain information about the coverage of dependents, what services will require a co-pay, and the circumstances under which your employer can change or terminate a health benefits plan. Save the SPD and all other health plan brochures and documents, along with memos or correspondence from your employer relating to health benefits. 5. Assess your benefit coverage as your family status changes. Marriage, divorce, childbirth or adoption, and the death of a spouse are all life events that may signal a need to change your health benefits. You, your spouse and dependent children may be eligible for a special enrollment period under provisions of the Health Insurance Portability and Accountability Act (HIPAA). Even without life-changing events, the information provided by your employer should tell you how you can change benefits or switch plans, if more than one plan is offered. If your spouse’s employer also offers a health benefits package, consider coordinating both plans for maximum coverage. 6. Changing jobs and other life events can affect your family’s health benefits. Under the Consolidated Omnibus Budget Reconciliation Act (COBRA), you, your covered spouse, and your dependent children may be eligible to purchase extended health coverage under your employer’s plan if you lose your job, change employers, get divorced, or upon occurrence of certain other events. Coverage can range from 18 to 36 months depending on your situation. COBRA applies to most employers with 20 or more workers and requires your plan to notify you of your rights. Most plans require eligible individuals to make their COBRA election within 60 days of the plan’s notice. Be sure to follow up with your plan sponsor if you don’t receive notice, and make sure you respond within the allotted time. 7. HIPAA can also help if you are changing jobs, particularly if you have a medical condition. HIPAA generally limits pre-existing condition exclusions to a maximum of 12 months (18 months for late enrollees). HIPAA also requires this maximum period to be reduced by the length of time you had prior “creditable coverage.” You should receive a certificate documenting your prior creditable coverage from your old plan when coverage ends. 8. Plan for retirement. Before you retire, find out what health benefits, if any, extend to you and your spouse during your retirement years. Consult with
294 Autism
your employer’s human resources office, your union, the plan administrator, and check your SPD. Make sure there is no conflicting information among these sources about the benefits your family will receive or the circumstances under which they can change or be eliminated. With this information in hand, you can make other important choices, like finding out if you are eligible for Medicare and Medigap insurance coverage. 9. Know how to file an appeal if a health benefits claim is denied. Understand how your plan handles grievances and where to make appeals of the plan’s decisions. Keep records and copies of correspondence. Check your health benefits package and your SPD to determine who is responsible for handling problems with benefit claims. Contact PWBA for customer service assistance if you are unable to obtain a response to your complaint. 10. You can take steps to improve the quality of the healthcare and the health benefits your family receives. Look for and use things like Quality Reports and Accreditation Reports whenever you can. Quality reports may contain consumer ratings -- how satisfied consumers are with the doctors in their plan, for instance-- and clinical performance measures -- how well a healthcare organization prevents and treats illness. Accreditation reports provide information on how accredited organizations meet national standards, and often include clinical performance measures. Look for these quality measures whenever possible. Consult “Your Guide to Choosing Quality Health Care” on the Internet at www.ahcpr.gov/consumer.
Medicaid Illness strikes both rich and poor families. For low-income families, Medicaid is available to defer the costs of treatment. In the following pages, you will learn the basics about Medicaid as well as useful contact information on how to find more in-depth information. Medicaid is a joint federal and state program that helps pay medical costs for some people with low incomes and limited resources. Medicaid programs vary from state to state. You can find more information about Medicaid on the HCFA.gov Web site at http://www.hcfa.gov/medicaid/medicaid.htm.
NORD’s Medication Assistance Programs Finally, the National Organization for Rare Disorders, Inc. (NORD) administers medication programs sponsored by humanitarian-minded
Your Child’s Rights and Insurance 295
pharmaceutical and biotechnology companies to help uninsured or underinsured individuals secure life-saving or life-sustaining drugs.63 NORD programs ensure that certain vital drugs are available “to those families whose income is too high to qualify for Medicaid but too low to pay for their prescribed medications.” The program has standards for fairness, equity, and unbiased eligibility. It currently covers some 14 programs for nine pharmaceutical companies. NORD also offers early access programs for investigational new drugs (IND) under the approved “Treatment INDs” programs of the Food and Drug Administration (FDA). In these programs, a limited number of individuals can receive investigational drugs that have yet to be approved by the FDA. These programs are generally designed for rare medical conditions. For more information, visit www.rarediseases.org.
Additional Resources In addition to the references already listed in this chapter, you may need more information on health insurance, hospitals, or the healthcare system in general. The NIH has set up an excellent guidance Web site that addresses these and other issues. Topics include:64 ·
Health Insurance: http://www.nlm.nih.gov/medlineplus/healthinsurance.html
·
Health Statistics: http://www.nlm.nih.gov/medlineplus/healthstatistics.html
·
HMO and Managed Care: http://www.nlm.nih.gov/medlineplus/managedcare.html
·
Hospice Care: http://www.nlm.nih.gov/medlineplus/hospicecare.html
·
Medicaid: http://www.nlm.nih.gov/medlineplus/medicaid.html
·
Medicare: http://www.nlm.nih.gov/medlineplus/medicare.html
·
Nursing Homes and Long-term Care: http://www.nlm.nih.gov/medlineplus/nursinghomes.html
Adapted from NORD: http://www.rarediseases.org/cgibin/nord/progserv#patient?id=rPIzL9oD&mv_pc=30. 64 You can access this information at: http://www.nlm.nih.gov/medlineplus/healthsystem.html. 63
296 Autism
·
Patient’s Rights, Confidentiality, Informed Consent, Ombudsman Programs, Privacy and Patient Issues: http://www.nlm.nih.gov/medlineplus/patientissues.html
·
Veteran’s Health, Persian Gulf War, Gulf War Syndrome, Agent Orange: http://www.nlm.nih.gov/medlineplus/veteranshealth.html
More on Autism and Genes 297
APPENDIX F. MORE ON AUTISM AND GENES Overview65 Autism is a complex biological disorder of development that lasts throughout a person’s life. People with autism have problems with social interaction and communication, so they may have trouble holding a conversation with you, or they may not look you in the eye. They sometimes have behaviors that they have to do or that they do over and over, like not being able to listen until their pencils are lined up or saying the same sentence again and again. They may flap their arms to tell you they are happy, or they might hurt themselves to tell you they are not. One person with autism may have different symptoms, show different behaviors, and come from different environments than other people with autism. Because of these differences, doctors now think of autism as a “spectrum” disorder, or a group of disorders with a range of similar features. Doctors classify people with autism spectrum disorder (ASD) based on their autistic symptoms. A person with mild autistic symptoms is at one end of the spectrum. A person with more serious symptoms of autism is at the other end of the spectrum. But they both have a form of ASD.
What Causes Autism? No one knows for sure what causes autism. It’s a complex biological disorder, and no two people with autism are the same. These differences lead Adapted from The National Institute of Child Health and Human Development (NICHD): http://www.nichd.nih.gov/publications/pubs/autism/factsheets/index.htm.
65
298 Autism
scientists to believe that autism is the result of a mixture of causes. They aren’t looking for just one cause for all cases of autism. At this point, scientists believe that the underlying cause of autism is genetic. Researchers from the Network on the Neurobiology and Genetics of Autism: Collaborative Programs of Excellence in Autism (CPEA), a network of scientists supported by the National Institute of Child Health and Human Development (NICHD) and the National Institute on Deafness and Other Communication Disorders (NIDCD), as well as other NICHD, NIH, and nonNIH scientists, are looking into how genes might be involved in autism. This worldwide research effort hopes to solve the mysteries of autism by understanding its causes.
What Are Genes? Genes are very small pieces of hereditary material, which means that parents pass them on to their children. Every person gets half their genes from their mother and half from their father. The pattern, or sequence, of your genes is like a blueprint that tells your body how to build its different parts. Your gene sequence controls how tall you are, what color your hair and eyes are, and other features of your body and mind. Changes in that blueprint can cause changes in how your body or mind develops. Genes are found on chromosomes. Almost every cell in your body contains 23 pairs of chromosomes, 46 in all. Genes and chromosomes give the body all the information it needs to “build” a person.
Why Study Genes? Past research hints at a link between autism and genes. For example: ·
When autism occurs in identical twins, both members of the set have the condition 60 percent of the time. When autism occurs in fraternal twins, both members of the set have the condition only 3-to-6 percent of the time. Identical twins come from a single egg that splits in two, so they share 100 percent of their genes; fraternal twins come from two separate eggs, so they are genetically different. If autism was not caused in part by genes, then the number of identical twins with autism would not be any higher than the number of fraternal twins with the condition. But,
More on Autism and Genes 299
since both identical twins have autism more often than both fraternal twins do, researchers think that genes play a role in autism. (Folstein & Rutter 1977; Bailey et al 1995; Smalley et al 1988, as cited in Ingram 2000) ·
Family histories and family studies show that some of the autism-like symptoms, such as delays in language development, occur more often in parents and adult brothers and sisters of people with autism, than in families who have no autistic members or relatives. Because members of the same family have similar gene sequences, these studies suggest that something about gene sequences is linked to autism. Autism is a spectrum disorder, meaning people with autism can have a range of symptoms. A certain change in the gene sequence may make the condition very mild, so that a person doesn’t have autism, but has one of its symptoms instead. A different change in that sequence could make the symptoms of autism more serious. (Landa et al 1991; Landa et al 1992; Volkmar et al 1998; MacLean et al 1999 as cited in Ingram 2000)
Based on these findings, doctors have long felt that a link between genes and autism was a strong possibility. But researchers don’t expect to find that just one gene causes autism. Because of differences in peoples’ symptoms, researchers believe that autism is the result of many genes interacting with each other. At this point, it seems that some children are born with a genetic susceptibility to autism. What makes some susceptible individuals develop autism and others not is an important research question.
What Have CPEA Researchers Found by Studying Genes and Autism? Genetic studies of autism conducted by the CPEA Network highlight some of the ways genes may be involved in autism.
Chromosomes Where Defective Genes Are Likely to Be Found CPEA investigators, working with researchers from around the world, are using a process called linkage analysis to identify genetic “hotspots,” or chromosome areas where defective genes related to autism may be found. So far the most promising leads seem to be on Chromosome 7, where genes for other language disorders are known to exist, and Chromosome 15 where genes for other developmental disorders have already been identified.
300 Autism
A Missing Piece of a Chromosome Could Be Tied to Autism A group of researchers at the University of California, Irvine, found that one of their seven-year-old patients with autism was missing a certain section of Chromosome 15 (Smith 2000). Why is this such a great discovery? It’s important because this is one of the first times that a specific genetic problem has actually been found in a person with autism. In the past, studies looked at groups of people with autism and some of the more general features of their genes, like which chromosomes might have problem genes, and whether they had one, two, or three copies of a chromosome. But in this study, researchers looked at one person at a time, to carefully focus on that person’s genes. This slow and complex process allowed researchers to create a detailed catalog of all 46 chromosomes for each autistic person, to find any missing blocks of these chromosomes. After taking a close look at the autistic boy’s chromosomes, the scientists found that he was missing nearly 1,000 pieces of the genetic sequence on Chromosome 15. Missing pieces of chromosomes mean that some of the instructions for building the body or mind are missing. Without these instructions, the body or mind may not be built correctly. Using this discovery, scientists will try to match the missing chromosome piece to some of the genes they think play a role in autism. If they can match a gene to the missing section of the chromosome, they may be able to uncover how the gene changes the body to cause autism. These findings may also lead to treatments that correct the changes caused by the missing chromosome piece. A Genetic Change Found in Many Patients with Autism Researchers at the University of Rochester School of Medicine and Dentistry in Rochester, New York, found that nearly 40 percent of people with autism in their study had a change in their gene linkage that could be a factor in causing their autism (Ingram 2000). The sequence or pattern of your genes controls how your body builds its parts. An alteration in that sequence changes how your body and mind are built, which may lead to autism. Specifically, 39 percent of the people with autism in the study had a change in one of the two copies of the HOXA1 gene, which is located on Chromosome 7. (Remember that chromosomes come in pairs, which means your cells have two copies of every gene.) The percentage of people who had
More on Autism and Genes 301
the change in one of their genes, but did not have autism and were not related to anyone with autism, was much lower (only 22 percent). Because twice as many people with autism had the gene change when compared with people who did not have autism but had the gene change, the HOXA1 gene could play a role in causing autism. In addition, 33 percent of people in the study, who did not have autism, but were related to someone with autism, also had the change in their gene, which supports the idea that the HOXA1 gene plays a role in causing autism. These findings suggest that the genetic sequence of these families is linked to autism and autism-like symptoms in some way. Scientists need to do more studies to find out just what that link is. But scientists don’t think that the change in the HOXA1 gene by itself causes autism. If the gene change was the only cause, then everyone who had that change would be diagnosed with autism. Because this is not the case, scientists think that the HOXA1 gene is only one of many genes that may contribute to the autism.
What Does the Future Hold for Studies of Genes and Autism? The CPEA Network is looking at other genetic mechanisms that may account for why different genetic defects related to autism seem to be found across different studies. Researchers in the Network will share their information and their methods to see if other researchers get the same results in other people with autism. Having several scientists get the same results “confirms” that discovery. They will see if these and other new genetic findings can be “replicated” or confirmed in other persons with autism. Once confirmed, a discovery becomes the stepping stone to other discoveries. Researchers in the Network hope that the latest findings on genes and autism are just the beginning. By understanding both genetic and environmental causes of autism, scientists may be able to understand how to treat it and maybe even how to prevent it. While some researchers focus on confirming the findings reported here, other researchers are doing their own studies on different features of autism and genes. Doctors and scientists will keep looking at genes and environment and how they interact with each other until they solve the mysteries of autism.
302 Autism
Where Can I Go for More Information about Autism? The NICHD Clearinghouse provides information on autism and autism research, and on other topics related to the health of children, adults, and families. The information specialists at the NICHD Clearinghouse are available at: Mail: PO Box 3006, Rockville, MD 20847 Phone: 1-800-370-2943 Fax: 301-984-1473 Email:
[email protected] The NICHD Autism Web Page, www.nichd.nih.gov/autism, offers information on NICHD autism research, including the CPEA Network, current grants and funding mechanisms, ongoing clinical trials, and the NIH Autism Coordinating Committee. With a variety of information on topics related to autism, the NICHD Autism Web site is a good place to start your search for information. You can also comment on the Autism Research at the NICHD fact sheets through the Autism Web site.
More on the MMR Vaccine and Autism 303
APPENDIX G. MORE ON THE MMR VACCINE AND AUTISM Overview66 Autism is a complex biological disorder of development that lasts throughout a person’s life. People with autism have problems with social interaction and communication, so they may have trouble having a conversation with you, or they may not look you in the eye. They sometimes have behaviors that they have to do or that they do over and over, like not being able to listen until their pencils are lined up or saying the same sentence again and again. They may flap their arms to tell you they are happy, or they might hurt themselves to tell you they are not. One person with autism may have different symptoms, show different behaviors, and come from different environments than others with autism. Because of these differences, doctors now think of autism as a “spectrum” disorder, or a group of disorders with a range of similar features. Doctors classify people with autism spectrum disorder (ASD) based on their autistic symptoms. A person with mild autistic symptoms is at one end of the spectrum. A person with more serious symptoms of autism is at the other end of the spectrum. But they both have a form of ASD. The National Institute of Child Health and Human Development (NICHD), part of the National Institutes of Health (NIH), is one of the NIH Institutes doing research into various aspects of autism, including its causes, how many people have it, and its treatments.
Adapted from The National Institute of Child Health and Human Development (NICHD): http://www.nichd.nih.gov/publications/pubs/autism/mmr/index.htm.
66
304 Autism
Why Do People Think That Vaccines Can Cause Autism? Some parents and families of children with autism believe that the Measles/Mumps/ Rubella (MMR) vaccine caused their children’s autism. These parents report that their children were “normal” until they received the MMR vaccine. Then, after getting the vaccine, their children started showing symptoms of autism. Because the symptoms of autism begin to occur around the same time as the child’s MMR vaccination, parents and families see the vaccine as the cause of the autism. However, just because the events happen around the same time does not mean that one caused the other. Although children receive many other vaccines in addition to the MMR vaccine, these other vaccines have not been identified as possible causes of autism. These parents’ beliefs and observations were reinforced by a small study of bowel disease and autism, published by Wakefield and his colleagues in 1998 (Wakefield et al 1998). The study’s authors suggested that there was a link between the MMR vaccine and autism. This study did not include scientific testing to find out if there was a link. The authors relied on the reports of parents and families of the 12 children with autism involved in the study to make their suggestion. The study did not provide scientific proof that there was any link. Since this study was published in 1998, a number of other studies have also been published that suggested a link between the MMR vaccine and autism (Singh et al 1998; Horvath et al 1999; O’Leary et al 2000; Wakefield et al 2000; Kawashima et al 2000), but none of these provide scientific proof of such a link. To date there is no definite, scientific proof that any vaccine or combination of vaccines can cause autism. It’s important to know that vaccines actually help the immune system to defend the body.
How Do Vaccines Help the Immune System Defend the Body? The immune system has cells, sometimes called memory cells, that remember diseases. If these cells meet a disease, they keep track of what it looks like so they can recognize it later. When the memory cells meet up with the disease again, they recognize it and know they need to get rid of it. They call in the other parts of the immune system to get rid of the disease. In some cases, memory cells can recognize a disease without ever having to meet up with it,
More on the MMR Vaccine and Autism 305
which is called “natural” immunity. In other cases, the cells need some help to become familiar with a disease. That help comes in the form of a vaccine. The vaccine takes a form of the disease that doesn’t make you sick and introduces it to the memory cells so they know what to look for later. If the memory cells ever bump into the disease again, they know to call in other cells in the immune system to protect the body and get rid of the disease. The memory cells of a child keep track of diseases well into adulthood, preventing such diseases by getting rid of them quickly. In this way, vaccines help the immune system by making it easier to remember diseases.
Why Do Many Doctors and Scientists Believe That the MMR Vaccine Does Not Cause Autism? In 2000, the Institute of Medicine (IOM) at the National Academy of Sciences, at the request of the Centers for Disease Control and Prevention (CDC) and the NIH, conducted a review of all the evidence related to the MMR vaccine and autism. This independent panel examined completed studies, on-going studies, published medical and scientific papers, and expert testimony to assess whether or not there was a link between autism and the MMR vaccine. The IOM concluded that the evidence reviewed did not support an association between autism and the MMR vaccine. This and other conclusions from the IOM review were released in April 2001 (Immunization Safety Review Committee 2001). Also in 2000, The American Academy of Pediatrics (AAP), a professional organization for pediatricians with over 55,000 members, held a conference on the MMR vaccine and autism. Parents, scientists, and practitioners presented information on this topic to a multidisciplinary panel of experts. Based on its review, the AAP also found that the available evidence did not support the theory that the MMR vaccine caused autism or related disorders. The AAP policy statement appeared in the May issue of Pediatrics (Halsey et al 2001). In 1999, Taylor and colleagues published a study (Taylor et al 1999) that argued against the suggested link between autism and the MMR vaccine suggested in the Wakefield study. Taylor’s study looked at all the known cases of ASD in children living in certain districts of London who were born in 1979, or later. Researchers then matched the ASD patients with an independent registry of vaccinations. The results of this study showed that:
306 Autism
·
The number of ASD cases had increased steadily since 1979, but there was no sharp increase in the number of cases after doctors started using the MMR vaccine in 1988.
·
Children showed symptoms of ASD and were diagnosed with ASD at the same ages, regardless of whether they were vaccinated before or after 18 months of age. This finding is important because if the MMR vaccine caused ASD, the children who were vaccinated earlier would show symptoms earlier.
·
By age two, vaccination coverage (the number of children who received vaccines) among children with ASD was nearly the same as vaccination coverage for children the same age who did not have ASD throughout the region. If the MMR vaccine and ASD autism were linked, then a greater number of children who had been vaccinated throughout the region would have ASD.
·
The first signs of autistic behavior or first diagnosis of ASD was not more likely to occur in time periods following the MMR vaccine than in other time periods.
Also in 1999, the United Kingdom’s Committee on Safety of Medicine examined hundreds of reports collected by lawyers of patients with autism and similar disorders that families said they developed after receiving the MMR or MR vaccine. After a systematic, standardized review of the case information, the Committee found that the information did not support any link between vaccines and autism. Based on the evidence, the Committee concluded that there was no cause for concern about the safety of MMR or MR vaccines (Medicines Commission Agency 1999). A study, done in Sweden in 1998, also showed no evidence of association between the MMR vaccine and autism. The study compared the number of autism cases in children from two Swedish towns before 1982, when local doctors first started using the MMR vaccine, and after 1982. The results showed no difference in the rate of autism between the two groups of children in either town (Gillberg & Heijbel 1998). Another study, done in England in 1997, looked at any possible link between the measles-specific vaccine (one part of the MMR vaccine) and different problems that result from damage to the nervous system, such as learning disabilities and behavior problems. These researchers found no proof that the measles vaccine was in any way linked to long-term damage to the nervous system (Miller et al 1997).
More on the MMR Vaccine and Autism 307
Current Research on the Possible Link Between the MMR Vaccine and Autism The NIH is doing a number of things to look into the claims about MMR vaccines and autism: ·
The Network on the Neurobiology and Genetics of Autism: Collaborative Programs of Excellence in Autism (CPEA), funded by the NICHD and the National Institute on Deafness and Other Communication Disorders (NIDCD), with additional funding from the CDC, are working together to study autism and the MMR vaccine. This research will examine people diagnosed with autism who seemed to develop normally, but then started to show autistic symptoms. This type of situation is called “regression.” To learn as much as possible about these patients, researchers will compare them to people who do not have autism, and to people who showed autistic symptoms since birth, called classic autism. CPEA researchers will compare vaccination records to see if the onset of autism was associated with receipt of MMR and other vaccines. Lab tests will then look for any evidence of persistent infections that could be related to the MMR vaccine.
·
The NICHD is also working with other NIH Institutes, the CDC, the Environmental Protection Agency (EPA), and other federal agencies to conduct a large, long-term study of the effects of the environment on children’s health. This study will follow 100,000 children from before birth to age 20, to track their growth and development, as well as their genetic blueprints and environmental factors that they encounter. Researchers hope to establish or rule out links between a variety of environmental events and normal and abnormal development, such as autism, asthma, and other childhood disorders that have shown dramatic increase. The study is currently under design.
·
Another NIH Institute, the National Institute of Neurological Disorders and Stroke (NINDS) is also conducting a retrospective case-control study to identify any molecular markers in neonatal blood of children with autism, with support from the California Department of Health Services and the Division of Bioengineering and Physical Science (DBEPS) at the NIH.
·
In 1998, the NIH, led by the NICHD and the NINDS, sponsored a conference on ASDs. These and other NIH Institutes formed an expert panel, which also included 15 professional organizations and three parents’ groups, and began a review of over 2,500 scientific articles to develop a system for diagnosing ASDs. The panel published its findings in the Journal of Autism and Developmental Disorders in 1999 (Filipek et
308 Autism
al 1999). In 2000, the panel’s report was adopted as a practice parameter by the American Academy of Neurology and the Child Neurology Society (Filipek et al 2000). Practice parameter: screening and diagnosis of autism gives doctors and other health professionals the first, standardized method for diagnosing autism and ASDs based on scientific evidence. In addition, the NIH is in the process of implementing the autism aspects of the Children’s Health Act of 2000. This Act, which was signed into law in October 2000, charges the NIH with the, “Expansion, intensification, and coordination of activities of the NIH with respect to research on autism.” All of the NIH Institutes that fund autism research are working together to establish “Centers of Excellence” to focus on autism research. In addition, the NIH will form a committee with representatives from parents’ groups and other federal agencies to coordinate autism research activities throughout the federal government and to enhance efforts to educate doctors and other health care professionals, and parents, and other child caretakers, about autism.
Aren’t the Diseases Prevented by the MMR Vaccine Mild, When Compared to the Life-Long Symptoms of Autism? The diseases that the MMR vaccine prevents, measles, mumps, and rubella (also called German measles), are actually very serious. Many times, the symptoms and effects of these diseases are just as serious and life-long as the symptoms of autism. In some cases, these diseases result in death. If people stop getting vaccines, the number of cases of these diseases will increase, and with it, the number of deaths and serious health problems. Measles is a life-threatening disease that spreads quickly and easily. Before the vaccine was available in the U.S., nearly everyone who was exposed to measles got the measles, with nearly three-to-four million cases each year. The symptoms of measles include a rash, high fever, cough, runny nose, and watery eyes. But, if not treated, these seemingly mild symptoms can lead to conditions such as pneumonia, seizures, and water and swelling around the brain. For one-in-500 to one-in-1,000 people, measles causes death. High levels of immunization in the U.S. have led to a 99 percent decrease in measles cases since doctors first started using the vaccine. But in poorer countries of the world, where vaccines aren’t as common, nearly 900,000 people died from causes related to measles in 1998.
More on the MMR Vaccine and Autism 309
Mumps, which the MMR vaccine also protects against, was a major cause of deafness in children before doctors started using vaccines to prevent it. Even though it tends to be mild in children, mumps is dangerous for adults, with side effects that can include paralysis, seizures, and fluid in the brain. Before the vaccine for mumps was available, there were about 212,000 cases of mumps each year in the U.S. In 1998, there were only 606 cases of mumps in the U.S. The last disease prevented by the MMR vaccine, rubella, is harmful to pregnant women and their growing babies. If a pregnant woman gets rubella, her baby may develop a life-long condition that includes heart defects, mental retardation, and deafness. In some cases, the baby’s condition is so severe that the baby dies. In 1964-65, before the vaccine for rubella was available, 20,000 babies were born to mothers who had rubella. Of those 20,000 born, 11,600 were deaf, 3,580 were blind, and 1,800 were mentally retarded.67
Should My Child Have the MMR Vaccine? Both the CDC and the AAP recommend that children receive two doses of the MMR vaccine, as long as they have no known health problems that prevent the vaccine from being effective. The CDC and AAP immunization schedules recommend that the first dose be given at age 12-to-15 months, while the second dose should be given at either four-to-six years of age or 11to-12 years of age. Allergies, immune system diseases like HIV, or other sicknesses can interact with a vaccine to make it less effective. These interactions can sometimes cause other health problems. If your child is sick, your doctor may delay the vaccination until your child is healthy. For example, a child with a fever should not have a vaccination until the fever is gone. Make sure you give a complete description of your child’s current health and health history to your child’s doctor at every visit, so he or she can help you make an informed choice about the timing of your child’s vaccinations.
Note: Disease statistics cited in this document came from the National Institute of Allergy and Infectious Diseases at the NIH and the National Immunization Program at the CDC.
67
310 Autism
For More Information on Autism For more information on autism and autism research, including studies involving vaccines and autism, contact the NICHD Clearinghouse, at: Mail: PO Box 3006, Rockville, MD 20847 Phone: 1-800-370-2943 Fax: 301-984-1473 Email:
[email protected] Internet: www.nichd.nih.gov/autism You can also comment on this or other Autism Research at the NICHD fact sheets through the Web site. For more information on vaccines and vaccine safety, contact the National Immunization Program (NIP) at the CDC, at 1-800-232-2522 (English) or 1800-232-0233 (Spanish), or visit the NIP web site at www.cdc.gov/nip.
Online Glossaries 311
ONLINE GLOSSARIES The Internet provides access to a number of free-to-use medical dictionaries and glossaries. The National Library of Medicine has compiled the following list of online dictionaries: ·
ADAM Medical Encyclopedia (A.D.A.M., Inc.), comprehensive medical reference: http://www.nlm.nih.gov/medlineplus/encyclopedia.html
·
MedicineNet.com Medical Dictionary (MedicineNet, Inc.): http://www.medterms.com/Script/Main/hp.asp
·
Merriam-Webster Medical Dictionary (Inteli-Health, Inc.): http://www.intelihealth.com/IH/
·
Multilingual Glossary of Technical and Popular Medical Terms in Eight European Languages (European Commission) - Danish, Dutch, English, French, German, Italian, Portuguese, and Spanish: http://allserv.rug.ac.be/~rvdstich/eugloss/welcome.html
·
On-line Medical Dictionary (CancerWEB): http://www.graylab.ac.uk/omd/
·
Technology Glossary (National Library of Medicine) - Health Care Technology: http://www.nlm.nih.gov/nichsr/ta101/ta10108.htm
·
Terms and Definitions (Office of Rare Diseases): http://rarediseases.info.nih.gov/ord/glossary_a-e.html
Beyond these, MEDLINEplus contains a very user-friendly encyclopedia covering every aspect of medicine (licensed from A.D.A.M., Inc.). The ADAM Medical Encyclopedia Web site address is http://www.nlm.nih.gov/medlineplus/encyclopedia.html. ADAM is also available on commercial Web sites such as drkoop.com (http://www.drkoop.com/) and Web MD (http://my.webmd.com/adam/asset/adam_disease_articles/a_to_z/a). Topics of interest can be researched by using keywords before continuing elsewhere, as these basic definitions and concepts will be useful in more advanced areas of research. You may choose to print various pages specifically relating to autism and keep them on file. The NIH, in particular, suggests that parents of children with autism visit the following Web sites in the ADAM Medical Encyclopedia:
312 Autism
·
Basic Guidelines for Autism Autism Web site: http://www.nlm.nih.gov/medlineplus/ency/article/001526.htm Autism - resources Web site: http://www.nlm.nih.gov/medlineplus/ency/article/002163.htm
·
Diagnostics and Tests for Autism ADH Web site: http://www.nlm.nih.gov/medlineplus/ency/article/003702.htm ALT Web site: http://www.nlm.nih.gov/medlineplus/ency/article/003473.htm
·
Background Topics for Autism Autism - resources Web site: http://www.nlm.nih.gov/medlineplus/ency/article/002163.htm
Online Dictionary Directories The following are additional online directories compiled by the National Library of Medicine, including a number of specialized medical dictionaries and glossaries: ·
Medical Dictionaries: Medical & Biological (World Health Organization): http://www.who.int/hlt/virtuallibrary/English/diction.htm#Medical
·
MEL-Michigan Electronic Library List of Online Health and Medical Dictionaries (Michigan Electronic Library): http://mel.lib.mi.us/health/health-dictionaries.html
·
Patient Education: Glossaries (DMOZ Open Directory Project): http://dmoz.org/Health/Education/Patient_Education/Glossaries/
·
Web of Online Dictionaries (Bucknell University): http://www.yourdictionary.com/diction5.html#medicine
Glossary 313
AUTISM GLOSSARY The following is a complete glossary of terms used in this sourcebook. The definitions are derived from official public sources including the National Institutes of Health [NIH] and the European Union [EU]. After this glossary, we list a number of additional hardbound and electronic glossaries and dictionaries that you may wish to consult. Aberrant: Wandering or deviating from the usual or normal course. [EU] Abortion: 1. the premature expulsion from the uterus of the products of conception - of the embryo, or of a nonviable fetus. The four classic symptoms, usually present in each type of abortion, are uterine contractions, uterine haemorrhage, softening and dilatation of the cervix, and presentation or expulsion of all or part of the products of conception. 2. premature stoppage of a natural or a pathological process. [EU] Accommodation: distances. [EU]
Adjustment, especially that of the eye for various
Acidosis: A pathologic condition resulting from accumulation of acid or depletion of the alkaline reserve (bicarbonate content) in the blood and body tissues, and characterized by an increase in hydrogen ion concentration. [EU] ACTH: Adrenocorticotropic hormone. [EU] Adenosine: A nucleoside that is composed of adenine and d-ribose. Adenosine or adenosine derivatives play many important biological roles in addition to being components of DNA and RNA. Adenosine itself is a neurotransmitter. [NIH] Adolescence: The period of life beginning with the appearance of secondary sex characteristics and terminating with the cessation of somatic growth. The years usually referred to as adolescence lie between 13 and 18 years of age. [NIH]
Aerosol: A solution of a drug which can be atomized into a fine mist for inhalation therapy. [EU] Amygdala: Almond-shaped group of basal nuclei anterior to the inferior horn of the lateral ventricle of the brain, within the temporal lobe. The amygdala is part of the limbic system. [NIH] Anatomical: Pertaining to anatomy, or to the structure of the organism. [EU] Anemia: A reduction in the number of circulating erythrocytes or in the quantity of hemoglobin. [NIH] Antibiotic: A chemical substance produced by a microorganism which has the capacity, in dilute solutions, to inhibit the growth of or to kill other
314 Autism
microorganisms. Antibiotics that are sufficiently nontoxic to the host are used as chemotherapeutic agents in the treatment of infectious diseases of man, animals and plants. [EU] Anticonvulsant: An agent that prevents or relieves convulsions. [EU] Antifungal: Destructive to fungi, or suppressing their reproduction or growth; effective against fungal infections. [EU] Anxiety: The unpleasant emotional state consisting of psychophysiological responses to anticipation of unreal or imagined danger, ostensibly resulting from unrecognized intrapsychic conflict. Physiological concomitants include increased heart rate, altered respiration rate, sweating, trembling, weakness, and fatigue; psychological concomitants include feelings of impending danger, powerlessness, apprehension, and tension. [EU] Aphasia: Defect or loss of the power of expression by speech, writing, or signs, or of comprehending spoken or written language, due to injury or disease of the brain centres. [EU] Arrhythmia: Any variation from the normal rhythm of the heart beat, including sinus arrhythmia, premature beat, heart block, atrial fibrillation, atrial flutter, pulsus alternans, and paroxysmal tachycardia. [EU] Assay: Determination of the amount of a particular constituent of a mixture, or of the biological or pharmacological potency of a drug. [EU] Ataxia: Failure of muscular coordination; irregularity of muscular action. [EU]
Atypical: Irregular; not conformable to the type; in microbiology, applied specifically to strains of unusual type. [EU] Auditory: Pertaining to the sense of hearing. [EU] Autopsy: Postmortem examination of the body. [NIH] Bacteria: Unicellular prokaryotic microorganisms which generally possess rigid cell walls, multiply by cell division, and exhibit three principal forms: round or coccal, rodlike or bacillary, and spiral or spirochetal. [NIH] Bereavement: Refers to the whole process of grieving and mourning and is associated with a deep sense of loss and sadness. [NIH] Biochemical: Relating to biochemistry; characterized by, produced by, or involving chemical reactions in living organisms. [EU] Bromocriptine: A semisynthetic ergot alkaloid that is a dopamine D2 agonist. It suppresses prolactin secretion and is used to treat amenorrhea, galactorrhea, and female infertility, and has been proposed for Parkinson disease. [NIH] Buccal: Pertaining to or directed toward the cheek. In dental anatomy, used to refer to the buccal surface of a tooth. [EU]
Glossary 315
Capsules: Hard or soft soluble containers used for the oral administration of medicine. [NIH] Carbohydrate: An aldehyde or ketone derivative of a polyhydric alcohol, particularly of the pentahydric and hexahydric alcohols. They are so named because the hydrogen and oxygen are usually in the proportion to form water, (CH2O)n. The most important carbohydrates are the starches, sugars, celluloses, and gums. They are classified into mono-, di-, tri-, poly- and heterosaccharides. [EU] Causality: The relating of causes to the effects they produce. Causes are termed necessary when they must always precede an effect and sufficient when they initiate or produce an effect. Any of several factors may be associated with the potential disease causation or outcome, including predisposing factors, enabling factors, precipitating factors, reinforcing factors, and risk factors. [NIH] Cerebellum: Part of the metencephalon that lies in the posterior cranial fossa behind the brain stem. It is concerned with the coordination of movement. [NIH] Cerebral: Of or pertaining of the cerebrum or the brain. [EU] Cerebrospinal: Pertaining to the brain and spinal cord. [EU] Cholesterol: The principal sterol of all higher animals, distributed in body tissues, especially the brain and spinal cord, and in animal fats and oils. [NIH] Chorea: The ceaseless occurrence of a wide variety of rapid, highly complex, jerky movements that appear to be well coordinated but are performed involuntarily. [EU] Chromosomal: Pertaining to chromosomes. [EU] Chronic: Persisting over a long period of time. [EU] Cochlear: Of or pertaining to the cochlea. [EU] Conception: The onset of pregnancy, marked by implantation of the blastocyst; the formation of a viable zygote. [EU] Conduction: The transfer of sound waves, heat, nervous impulses, or electricity. [EU] Constipation: Infrequent or difficult evacuation of the faeces. [EU] Contraception: The prevention of conception or impregnation. [EU] Contraceptive: conception. [EU]
An agent that diminishes the likelihood of or prevents
Cortex: The outer layer of an organ or other body structure, as distinguished from the internal substance. [EU] Cranial: Pertaining to the cranium, or to the anterior (in animals) or superior
316 Autism
(in humans) end of the body. [EU] Cues: Signals for an action; that specific portion of a perceptual field or pattern of stimuli to which a subject has learned to respond. [NIH] Degenerative: Undergoing degeneration : tending to degenerate; having the character of or involving degeneration; causing or tending to cause degeneration. [EU] Delusions: A false belief regarding the self or persons or objects outside the self that persists despite the facts, and is not considered tenable by one's associates. [NIH] Diarrhea: Passage of excessively liquid or excessively frequent stools. [NIH] Dietetics: The study and regulation of the diet. [NIH] Disaccharides: Sugars composed of two monosaccharides linked by glycoside bonds. [NIH] Dizziness: An imprecise term which may refer to a sense of spatial disorientation, motion of the environment, or lightheadedness. [NIH] Dystonia: Disordered tonicity of muscle. [EU] Dystrophy: Any disorder arising from defective or faulty nutrition, especially the muscular dystrophies. [EU] Endogenous: Developing or originating within the organisms or arising from causes within the organism. [EU] Enzyme: A protein molecule that catalyses chemical reactions of other substances without itself being destroyed or altered upon completion of the reactions. Enzymes are classified according to the recommendations of the Nomenclature Committee of the International Union of Biochemistry. Each enzyme is assigned a recommended name and an Enzyme Commission (EC) number. They are divided into six main groups; oxidoreductases, transferases, hydrolases, lyases, isomerases, and ligases. [EU] Excitation: An act of irritation or stimulation or of responding to a stimulus; the addition of energy, as the excitation of a molecule by absorption of photons. [EU] Extracellular: Outside a cell or cells. [EU] Extraction: The process or act of pulling or drawing out. [EU] Facial: Of or pertaining to the face. [EU] Fluoxetine: The first highly specific serotonin uptake inhibitor. It is used as an antidepressant and often has a more acceptable side-effects profile than traditional antidepressants. [NIH] Ganglia: Clusters of multipolar neurons surrounded by a capsule of loosely organized connective tissue located outside the central nervous system. [NIH]
Glossary 317
Gastrointestinal: Pertaining to or communicating with the stomach and intestine, as a gastrointestinal fistula. [EU] Gels: Colloids with a solid continuous phase and liquid as the dispersed phase; gels may be unstable when, due to temperature or other cause, the solid phase liquifies; the resulting colloid is called a sol. [NIH] Genotype: The genetic constitution of the individual; the characterization of the genes. [NIH] Gestures: Movement of a part of the body for the purpose of communication. [NIH] Glucans: Polysaccharides composed of repeating glucose units. They can consist of branched or unbranched chains in any linkages. [NIH] Glutamine: A non-essential amino acid present abundantly throught the body and is involved in many metabolic processes. It is synthesized from glutamic acid and ammonia. It is the principal carrier of nitrogen in the body and is an important energy source for many cells. [NIH] Glycine: A non-essential amino acid. It is found primarily in gelatin and silk fibroin and used therapeutically as a nutrient. It is also a fast inhibitory neurotransmitter. [NIH] Gout: Hereditary metabolic disorder characterized by recurrent acute arthritis, hyperuricemia and deposition of sodium urate in and around the joints, sometimes with formation of uric acid calculi. [NIH] Guanfacine: A centrally acting antihypertensive agent. The drug lowers both systolic and diastolic blood pressure by activating the central nervous system alpha-2 adrenoreceptors, which results in reduced sympathetic outflow leading to reduced vascular tone. Its adverse reactions include dry mouth, sedation, and constipation. [NIH] Heredity: 1. the genetic transmission of a particular quality or trait from parent to offspring. 2. the genetic constitution of an individual. [EU] Heterozygote: An individual having different alleles at one or more loci in homologous chromosome segments. [NIH] Histamine: 1H-Imidazole-4-ethanamine. A depressor amine derived by enzymatic decarboxylation of histidine. It is a powerful stimulant of gastric secretion, a constrictor of bronchial smooth muscle, a vasodilator, and also a centrally acting neurotransmitter. [NIH] Homeostasis: A tendency to stability in the normal body states (internal environment) of the organism. It is achieved by a system of control mechanisms activated by negative feedback; e.g. a high level of carbon dioxide in extracellular fluid triggers increased pulmonary ventilation, which in turn causes a decrease in carbon dioxide concentration. [EU]
318 Autism
Hybridization: The genetic process of crossbreeding to produce a hybrid. Hybrid nucleic acids can be formed by nucleic acid hybridization of DNA and RNA molecules. Protein hybridization allows for hybrid proteins to be formed from polypeptide chains. [NIH] Hyperbilirubinemia: Pathologic process consisting of an abnormal increase in the amount of bilirubin in the circulating blood, which may result in jaundice. [NIH] Hyperplasia: The abnormal multiplication or increase in the number of normal cells in normal arrangement in a tissue. [EU] Idiopathic: Of the nature of an idiopathy; self-originated; of unknown causation. [EU] Imagination: A new pattern of perceptual or ideational material derived from past experience. [NIH] Immunity: The condition of being immune; the protection against infectious disease conferred either by the immune response generated by immunization or previous infection or by other nonimmunologic factors (innate i.). [EU] Immunization: The induction of immunity. [EU] Inflammation: A pathological process characterized by injury or destruction of tissues caused by a variety of cytologic and chemical reactions. It is usually manifested by typical signs of pain, heat, redness, swelling, and loss of function. [NIH] Infusion: The therapeutic introduction of a fluid other than blood, as saline solution, solution, into a vein. [EU] Inhalation: The drawing of air or other substances into the lungs. [EU] Insomnia: Inability to sleep; abnormal wakefulness. [EU] Institutionalization: The caring for individuals in institutions and their adaptation to routines characteristic of the institutional environment, and/or their loss of adaptation to life outside the institution. [NIH] Interstitial: Pertaining to or situated between parts or in the interspaces of a tissue. [EU] Iodine: A nonmetallic element of the halogen group that is represented by the atomic symbol I, atomic number 53, and atomic weight of 126.90. It is a nutritionally essential element, especially important in thyroid hormone synthesis. In solution, it has anti-infective properties and is used topically. [NIH]
Laryngectomy: Total or partial excision of the larynx. [NIH] Lesion: Any pathological or traumatic discontinuity of tissue or loss of function of a part. [EU]
Glossary 319
Leukotrienes: A family of biologically active compounds derived from arachidonic acid by oxidative metabolism through the 5-lipoxygenase pathway. They participate in host defense reactions and pathophysiological conditions such as immediate hypersensitivity and inflammation. They have potent actions on many essential organs and systems, including the cardiovascular, pulmonary, and central nervous system as well as the gastrointestinal tract and the immune system. [NIH] Limbic: Pertaining to a limbus, or margin; forming a border around. [EU] Lip: Either of the two fleshy, full-blooded margins of the mouth. [NIH] Malabsorption: Impaired intestinal absorption of nutrients. [EU] Malformation: A morphologic defect resulting from an intrinsically abnormal developmental process. [EU] Manic: Affected with mania. [EU] Manifest: Being the part or aspect of a phenomenon that is directly observable : concretely expressed in behaviour. [EU] Membrane: A thin layer of tissue which covers a surface, lines a cavity or divides a space or organ. [EU] Methylphenidate: A central nervous system stimulant used most commonly in the treatment of attention-deficit disorders in children and for narcolepsy. Its mechanisms appear to be similar to those of dextroamphetamine. [NIH] Mobility: Capability of movement, of being moved, or of flowing freely. [EU] Molecular: Of, pertaining to, or composed of molecules : a very small mass of matter. [EU] Mutism: Inability or refusal to speak. [EU] Naltrexone: Derivative of noroxymorphone that is the N-cyclopropylmethyl congener of naloxone. It is a narcotic antagonist that is effective orally, longer lasting and more potent than naloxone, and has been proposed for the treatment of heroin addiction. The FDA has approved naltrexone for the treatment of alcohol dependence. [NIH] Nausea: An unpleasant sensation, vaguely referred to the epigastrium and abdomen, and often culminating in vomiting. [EU] Neonatal: Pertaining to the first four weeks after birth. [EU] Neural: 1. pertaining to a nerve or to the nerves. 2. situated in the region of the spinal axis, as the neutral arch. [EU] Neuroanatomy: Study of the anatomy of the nervous system as a specialty or discipline. [NIH] Neuroleptic:
A term coined to refer to the effects on cognition and
320 Autism
behaviour of antipsychotic drugs, which produce a state of apathy, lack of initiative, and limited range of emotion and in psychotic patients cause a reduction in confusion and agitation and normalization of psychomotor activity. [EU] Neurology: A medical specialty concerned with the study of the structures, functions, and diseases of the nervous system. [NIH] Neuromuscular: Pertaining to muscles and nerves. [EU] Neuronal: Pertaining to a neuron or neurons (= conducting cells of the nervous system). [EU] Neurons: The basic cellular units of nervous tissue. Each neuron consists of a body, an axon, and dendrites. Their purpose is to receive, conduct, and transmit impulses in the nervous system. [NIH] Neuropeptides: Peptides released by neurons as intercellular messengers. Many neuropeptides are also hormones released by non-neuronal cells. [NIH] Neurophysiology: The scientific discipline concerned with the physiology of the nervous system. [NIH] Neuropsychology: A branch of psychology which investigates the correlation between experience or behavior and the basic neurophysiological processes. The term neuropsychology stresses the dominant role of the nervous system. It is a more narrowly defined field than physiological psychology or psychophysiology. [NIH] Neurosciences: The scientific disciplines concerned with the embryology, anatomy, physiology, biochemistry, pharmacology, etc., of the nervous sytem. [NIH] Neurotransmitter: Any of a group of substances that are released on excitation from the axon terminal of a presynaptic neuron of the central or peripheral nervous system and travel across the synaptic cleft to either excite or inhibit the target cell. Among the many substances that have the properties of a neurotransmitter are acetylcholine, norepinephrine, epinephrine, dopamine, glycine, y-aminobutyrate, glutamic acid, substance P, enkephalins, endorphins, and serotonin. [EU] Niacin: Water-soluble vitamin of the B complex occurring in various animal and plant tissues. Required by the body for the formation of coenzymes NAD and NADP. Has pellagra-curative, vasodilating, and antilipemic properties. [NIH] Norepinephrine: Precursor of epinephrine that is secreted by the adrenal medulla and is a widespread central and autonomic neurotransmitter. Norepinephrine is the principal transmitter of most postganglionic sympathetic fibers and of the diffuse projection system in the brain arising from the locus ceruleus. It is also found in plants and is used
Glossary 321
pharmacologically as a sympathomimetic. [NIH] Oligoelement: A chemical substance, minute amounts of which can be found in living organisms. [EU] Otolaryngology: A surgical specialty concerned with the study and treatment of disorders of the ear, nose, and throat. [NIH] Overdose: 1. to administer an excessive dose. 2. an excessive dose. [EU] Paralysis: Loss or impairment of motor function in a part due to lesion of the neural or muscular mechanism; also by analogy, impairment of sensory function (sensory paralysis). In addition to the types named below, paralysis is further distinguished as traumatic, syphilitic, toxic, etc., according to its cause; or as obturator, ulnar, etc., according to the nerve part, or muscle specially affected. [EU] Parity: The number of offspring a female has borne. It is contrasted with gravidity, which refers to the number of pregnancies, regardless of outcome. [NIH]
Paroxysmal: Recurring in paroxysms (= spasms or seizures). [EU] Pediatrics: A medical specialty concerned with maintaining health and providing medical care to children from birth to adolescence. [NIH] Perinatal: Pertaining to or occurring in the period shortly before and after birth; variously defined as beginning with completion of the twentieth to twenty-eighth week of gestation and ending 7 to 28 days after birth. [EU] Phenotype: The outward appearance of the individual. It is the product of interactions between genes and between the genotype and the environment. This includes the killer phenotype, characteristic of YEASTS. [NIH] Pneumonia: Inflammation of the lungs with consolidation. [EU] Polymorphic: Occurring in several or many forms; appearing in different forms at different stages of development. [EU] Polypeptide: A peptide which on hydrolysis yields more than two amino acids; called tripeptides, tetrapeptides, etc. according to the number of amino acids contained. [EU] Potassium: An element that is in the alkali group of metals. It has an atomic symbol K, atomic number 19, and atomic weight 39.10. It is the chief cation in the intracellular fluid of muscle and other cells. Potassium ion is a strong electrolyte and it plays a significant role in the regulation of fluid volume and maintenance of the water-electrolyte balance. [NIH] Precursor: Something that precedes. In biological processes, a substance from which another, usually more active or mature substance is formed. In clinical medicine, a sign or symptom that heralds another. [EU] Predisposition: A latent susceptibility to disease which may be activated
322 Autism
under certain conditions, as by stress. [EU] Preeclampsia: A toxaemia of late pregnancy characterized by hypertension, edema, and proteinuria, when convulsions and coma are associated, it is called eclampsia. [EU] Prenatal: Existing or occurring before birth, with reference to the fetus. [EU] Prolapse: 1. the falling down, or sinking, of a part or viscus; procidentia. 2. to undergo such displacement. [EU] Prophylaxis: The prevention of disease; preventive treatment. [EU] Prostaglandins: A group of compounds derived from unsaturated 20carbon fatty acids, primarily arachidonic acid, via the cyclooxygenase pathway. They are extremely potent mediators of a diverse group of physiological processes. [NIH] Protease: Proteinase (= any enzyme that catalyses the splitting of interior peptide bonds in a protein). [EU] Proteins: Polymers of amino acids linked by peptide bonds. The specific sequence of amino acids determines the shape and function of the protein. [NIH]
Psychiatric: Pertaining to or within the purview of psychiatry. [EU] Psychiatry: The medical science that deals with the origin, diagnosis, prevention, and treatment of mental disorders. [NIH] Psychology: The science dealing with the study of mental processes and behavior in man and animals. [NIH] Psychopathology: The study of significant causes and processes in the development of mental illness. [NIH] Psychopharmacology: The study of the effects of drugs on mental and behavioral activity. [NIH] Psychotropic: Exerting an effect upon the mind; capable of modifying mental activity; usually applied to drugs that effect the mental state. [EU] Purines: A series of heterocyclic compounds that are variously substituted in nature and are known also as purine bases. They include adenine and guanine, constituents of nucleic acids, as well as many alkaloids such as caffeine and theophylline. Uric acid is the metabolic end product of purine metabolism. [NIH] Receptor: 1. a molecular structure within a cell or on the surface characterized by (1) selective binding of a specific substance and (2) a specific physiologic effect that accompanies the binding, e.g., cell-surface receptors for peptide hormones, neurotransmitters, antigens, complement fragments, and immunoglobulins and cytoplasmic receptors for steroid hormones. 2. a sensory nerve terminal that responds to stimuli of various
Glossary 323
kinds. [EU] Recurrence: The return of a sign, symptom, or disease after a remission. [NIH] Registries: The systems and processes involved in the establishment, support, management, and operation of registers, e.g., disease registers. [NIH] Remission: A diminution or abatement of the symptoms of a disease; also the period during which such diminution occurs. [EU] Ribavirin: 1-beta-D-Ribofuranosyl-1H-1,2,4-triazole-3-carboxamide. A nucleoside antimetabolite antiviral agent that blocks nucleic acid synthesis and is used against both RNA and DNA viruses. [NIH] Riboflavin: Nutritional factor found in milk, eggs, malted barley, liver, kidney, heart, and leafy vegetables. The richest natural source is yeast. It occurs in the free form only in the retina of the eye, in whey, and in urine; its principal forms in tissues and cells are as FMN and FAD. [NIH] Risperidone: A selective blocker of dopamine D2 and serotonin-5-HT-2 receptors that acts as an atypical antipsychotic agent. It has been shown to improve both positive and negative symptoms in the treatment of schizophrenia. [NIH] Rubella: An acute, usually benign, infectious disease caused by a togavirus and most often affecting children and nonimmune young adults, in which the virus enters the respiratory tract via droplet nuclei and spreads to the lymphatic system. It is characterized by a slight cold, sore throat, and fever, followed by enlargement of the postauricular, suboccipital, and cervical lymph nodes, and the appearances of a fine pink rash that begins on the head and spreads to become generalized. Called also German measles, roetln, röteln, and three-day measles, and rubeola in French and Spanish. [EU] Schizophrenia: A severe emotional disorder of psychotic depth characteristically marked by a retreat from reality with delusion formation, hallucinations, emotional disharmony, and regressive behavior. [NIH] Sclerosis: A induration, or hardening; especially hardening of a part from inflammation and in diseases of the interstitial substance. The term is used chiefly for such a hardening of the nervous system due to hyperplasia of the connective tissue or to designate hardening of the blood vessels. [EU] Seizures: Clinical or subclinical disturbances of cortical function due to a sudden, abnormal, excessive, and disorganized discharge of brain cells. Clinical manifestations include abnormal motor, sensory and psychic phenomena. Recurrent seizures are usually referred to as epilepsy or "seizure disorder." [NIH] Selenium: An element with the atomic symbol Se, atomic number 34, and atomic weight 78.96. It is an essential micronutrient for mammals and other animals but is toxic in large amounts. Selenium protects intracellular
324 Autism
structures against oxidative damage. It is an essential component of glutathione peroxidase. [NIH] Septum: A dividing wall or partition; a general term for such a structure. The term is often used alone to refer to the septal area or to the septum pellucidum. [EU] Sertraline: A selective serotonin uptake inhibitor that is used in the treatment of depression. [NIH] Smiling: A facial expression which may denote feelings of pleasure, affection, amusement, etc. [NIH] Socialization: The training or molding of an individual through various relationships, educational agencies, and social controls, which enables him to become a member of a particular society. [NIH] Somatic: 1. pertaining to or characteristic of the soma or body. 2. pertaining to the body wall in contrast to the viscera. [EU] Spasmodic: Of the nature of a spasm. [EU] Spectrum: A charted band of wavelengths of electromagnetic vibrations obtained by refraction and diffraction. By extension, a measurable range of activity, such as the range of bacteria affected by an antibiotic (antibacterial s.) or the complete range of manifestations of a disease. [EU] Stimulant: 1. producing stimulation; especially producing stimulation by causing tension on muscle fibre through the nervous tissue. 2. an agent or remedy that produces stimulation. [EU] Suppository: A medicated mass adapted for introduction into the rectal, vaginal, or urethral orifice of the body, suppository bases are solid at room temperature but melt or dissolve at body temperature. Commonly used bases are cocoa butter, glycerinated gelatin, hydrogenated vegetable oils, polyethylene glycols of various molecular weights, and fatty acid esters of polyethylene glycol. [EU] Symbiosis: The living together of organisms of different species. [NIH] Systemic: Pertaining to or affecting the body as a whole. [EU] Taurine: 2-Aminoethanesulfonic acid. A conditionally essential nutrient, important during mammalian development. It is present in milk but is isolated mostly from ox bile and strongly conjugates bile acids. [NIH] Telemedicine: Delivery of health services via remote telecommunications. This includes interactive consultative and diagnostic services. [NIH] Teratogens: An agent that causes the production of physical defects in the developing embryo. [NIH] Thyroxine: An amino acid of the thyroid gland which exerts a stimulating effect on thyroid metabolism. [NIH]
Glossary 325
Tinnitus: A noise in the ears, as ringing, buzzing, roaring, clicking, etc. Such sounds may at times be heard by others than the patient. [EU] Tone: 1. the normal degree of vigour and tension; in muscle, the resistance to passive elongation or stretch; tonus. 2. a particular quality of sound or of voice. 3. to make permanent, or to change, the colour of silver stain by chemical treatment, usually with a heavy metal. [EU] Trichotillomania: Compulsion to pull out one's hair. [NIH] Vaccination: The introduction of vaccine into the body for the purpose of inducing immunity. Coined originally to apply to the injection of smallpox vaccine, the term has come to mean any immunizing procedure in which vaccine is injected. [EU] Vaccine: A suspension of attenuated or killed microorganisms (bacteria, viruses, or rickettsiae), administered for the prevention, amelioration or treatment of infectious diseases. [EU] Vaginal: 1. of the nature of a sheath; ensheathing. 2. pertaining to the vagina. 3. pertaining to the tunica vaginalis testis. [EU] Vestibular: Pertaining to or toward a vestibule. In dental anatomy, used to refer to the tooth surface directed toward the vestibule of the mouth. [EU] Withdrawal: 1. a pathological retreat from interpersonal contact and social involvement, as may occur in schizophrenia, depression, or schizoid avoidant and schizotypal personality disorders. 2. (DSM III-R) a substancespecific organic brain syndrome that follows the cessation of use or reduction in intake of a psychoactive substance that had been regularly used to induce a state of intoxication. [EU]
General Dictionaries and Glossaries While the above glossary is essentially complete, the dictionaries listed here cover virtually all aspects of medicine, from basic words and phrases to more advanced terms (sorted alphabetically by title; hyperlinks provide rankings, information and reviews at Amazon.com): ·
Dictionary of Medical Acronymns & Abbreviations by Stanley Jablonski (Editor), Paperback, 4th edition (2001), Lippincott Williams & Wilkins Publishers, ISBN: 1560534605, http://www.amazon.com/exec/obidos/ASIN/1560534605/icongroupinterna
·
Dictionary of Medical Terms : For the Nonmedical Person (Dictionary of Medical Terms for the Nonmedical Person, Ed 4) by Mikel A. Rothenberg, M.D, et al, Paperback - 544 pages, 4th edition (2000), Barrons Educational
326 Autism
Series, ISBN: 0764112015, http://www.amazon.com/exec/obidos/ASIN/0764112015/icongroupinterna ·
A Dictionary of the History of Medicine by A. Sebastian, CD-Rom edition (2001), CRC Press-Parthenon Publishers, ISBN: 185070368X, http://www.amazon.com/exec/obidos/ASIN/185070368X/icongroupinterna
·
Dorland’s Illustrated Medical Dictionary (Standard Version) by Dorland, et al, Hardcover - 2088 pages, 29th edition (2000), W B Saunders Co, ISBN: 0721662544, http://www.amazon.com/exec/obidos/ASIN/0721662544/icongroupinterna
·
Dorland’s Electronic Medical Dictionary by Dorland, et al, Software, 29th Book & CD-Rom edition (2000), Harcourt Health Sciences, ISBN: 0721694934, http://www.amazon.com/exec/obidos/ASIN/0721694934/icongroupinterna
·
Dorland’s Pocket Medical Dictionary (Dorland’s Pocket Medical Dictionary, 26th Ed) Hardcover - 912 pages, 26th edition (2001), W B Saunders Co, ISBN: 0721682812, http://www.amazon.com/exec/obidos/ASIN/0721682812/icongroupinterna /103-4193558-7304618
·
Melloni’s Illustrated Medical Dictionary (Melloni’s Illustrated Medical Dictionary, 4th Ed) by Melloni, Hardcover, 4th edition (2001), CRC PressParthenon Publishers, ISBN: 85070094X, http://www.amazon.com/exec/obidos/ASIN/85070094X/icongroupinterna
·
Stedman’s Electronic Medical Dictionary Version 5.0 (CD-ROM for Windows and Macintosh, Individual) by Stedmans, CD-ROM edition (2000), Lippincott Williams & Wilkins Publishers, ISBN: 0781726328, http://www.amazon.com/exec/obidos/ASIN/0781726328/icongroupinterna
·
Stedman’s Medical Dictionary by Thomas Lathrop Stedman, Hardcover 2098 pages, 27th edition (2000), Lippincott, Williams & Wilkins, ISBN: 068340007X, http://www.amazon.com/exec/obidos/ASIN/068340007X/icongroupinterna
·
Tabers Cyclopedic Medical Dictionary (Thumb Index) by Donald Venes (Editor), et al, Hardcover - 2439 pages, 19th edition (2001), F A Davis Co, ISBN: 0803606540, http://www.amazon.com/exec/obidos/ASIN/0803606540/icongroupinterna
Index 327
INDEX A Abdominal............................................139 Aberrant...............................................108 Abortion .......................................123, 313 Acidosis ...............................................130 Adenosine............................132, 140, 313 Adolescence ...... 39, 42, 43, 95, 153, 313, 321 Aerosol ................................................137 Amygdala.........................22, 42, 117, 313 Anatomical.............................................78 Anemia ..................................................63 Antibiotic ........................................44, 324 Antifungal.............................................130 Anxiety...........................36, 116, 217, 221 Aphasia..........................82, 136, 170, 194 Arrhythmia ...................................141, 314 Ataxia...........................................170, 225 Atypical ...15, 89, 102, 110, 133, 203, 216, 219, 323 Auditory ...37, 99, 121, 122, 251, 252, 254 Autopsy................................................108 B Bacteria .........................44, 266, 324, 325 Bereavement .......................................171 Biochemical .........................108, 181, 272 Bromocriptine ......................................273 Buccal ..................................112, 123, 314 C Capsules......................................137, 269 Carbohydrate.......................................268 Causal .................................................150 Causality..............................................150 Cerebellum ......................................22, 25 Cerebral....... 52, 60, 117, 132, 217, 218, 219, 220 Cerebrospinal ......................................117 Cholesterol ..................................266, 268 Chromosomal ........................96, 104, 218 Chronic ..........................52, 132, 171, 288 Cochlear ..............................................172 Conception ..........100, 122, 123, 313, 315 Conduction ............................................99 Constipation...........................89, 140, 317 Contraception ......................................100 Cortex ..........................................117, 252 Cranial ...................................43, 106, 315 Cues ..............................................21, 193 D Degenerative .......................................267 Delusions ...............................................23 Diarrhea...............................................266
Disaccharides ..................................... 135 Dizziness..................................... 170, 171 Dystonia ...................... 170, 171, 172, 219 Dystrophy.................................... 219, 225 E Endogenous........................................ 113 Enzyme ............... 141, 142, 273, 316, 322 Excitation ............ 132, 141, 142, 316, 320 Extracellular ........................ 132, 142, 317 Extraction ............................................ 100 F Facial ............................ 21, 143, 218, 324 Fluoxetine ....................................... 79, 80 G Ganglia................................................ 107 Gastrointestinal .... 43, 124, 187, 212, 317, 319 Gels..................................... 137, 141, 317 Genotype .................... 105, 109, 125, 321 Gestures ....................................... 35, 219 Glucans............................................... 135 Glutamine............................................ 138 Glycine ................................ 138, 142, 320 Gout ...................................................... 63 H Heredity............................................... 134 Histamine ............................................ 139 Homeostasis ....................................... 134 Hybridization ....................................... 106 Hyperbilirubinemia .............................. 100 Hyperplasia ............................. 44, 78, 323 I Idiopathic............................................. 111 Imagination ........................................... 34 Immunity ........... 43, 44, 63, 305, 318, 325 Immunization ...... 14, 71, 150, 202, 308, 309, 318 Infantile .... 4, 98, 118, 122, 134, 151, 181, 255, 257, 258, 260, 261, 273 Inflammation ......... 44, 124, 132, 319, 323 Infusion ............................................... 187 Inhalation ............................ 137, 140, 313 Insomnia ............................................. 132 Institutionalization ............................... 200 Interstitial................................. 44, 96, 323 L Laryngectomy ..................................... 172 Lesion ......................................... 118, 321 Limbic.................................... 42, 117, 313 Lip ................................................. 52, 172 M Malabsorption ..................................... 140
328 Autism
Malformation........................................186 Manic ...............................................53, 54 Manifest .................................35, 107, 131 Methylphenidate ....................................79 Mobility ..................................................62 Molecular ......78, 108, 109, 116, 125, 143, 214, 223, 224, 273, 307, 322, 324 Mutism .........................................166, 172 N Naltrexone ...........................271, 277, 319 Nausea ................................................140 Neural ..................................108, 117, 321 Neuroleptic ..........................................102 Neuromuscular ....................................219 Neuronal ..............................118, 124, 320 Neurons ...............106, 123, 124, 316, 320 Neuropeptides .....................112, 124, 320 Neurophysiology....................................97 Neuropsychology.................114, 124, 320 Neurotransmitter....... 140, 141, 142, 313, 317, 320 Niacin...................................................267 Norepinephrine ....................139, 142, 320 O Oligoelement .......................................271 Otolaryngology ......................................99 Overdose .............................................267 P Paralysis ......................................309, 321 Parity ...................................................100 Paroxysmal..........................136, 141, 314 Pediatrics.....................................100, 215 Perinatal ..............................................100 Phenotype ...109, 116, 125, 166, 203, 321 Pneumonia ..........................................308 Polymorphic...................................96, 116 Polypeptide..........................124, 129, 318 Potassium............................................268 Precursor .............................................115 Predisposition ........................23, 201, 202 Preeclampsia.......................................100 Prenatal .......................100, 112, 218, 253 Prolapse ..............................................100 Prophylaxis ..........................................133 Protease ..............................................135 Psychiatric ....51, 54, 77, 78, 82, 131, 169, 273 Psychiatry ..............................71, 171, 322
Psychology.................. 124, 151, 171, 320 Psychopharmacology ......................... 138 Psychotropic ....................................... 168 Purines............................................ 62, 63 R Receptor ..... 131, 133, 136, 138, 139, 255 Recurrence ........................................... 83 Registries ............................................ 217 Remission ............................. 89, 194, 323 Ribavirin .............................................. 133 Riboflavin .................................... 266, 271 Risperidone........................................... 82 Rubella... 14, 23, 119, 120, 150, 157, 202, 308, 309 S Schizophrenia ...... 23, 54, 60, 71, 78, 89, 132, 133, 169, 191, 258, 273, 323, 325 Sclerosis .... 23, 53, 54, 82, 116, 219, 225, 274 Seizures ...... 19, 22, 36, 44, 63, 100, 108, 132, 137, 142, 212, 271, 308, 309, 321, 323 Selenium ............................................. 268 Septum.................................... 22, 44, 324 Smiling ................................................ 134 Socialization.......................... 10, 149, 207 Somatic ................................. 42, 106, 313 Spasmodic .......................................... 170 Stimulant ................. 79, 89, 141, 317, 319 Suppository ......................... 137, 143, 324 Symbiosis............................................ 258 T Telemedicine ...................................... 106 Teratogens.......................................... 106 Thermoregulation................................ 266 Thyroxine ............................................ 268 Tone................................ 21, 89, 106, 317 V Vaccination .. 15, 119, 120, 188, 203, 205, 304, 306, 307, 309 Vaccine .... 14, 15, 44, 120, 150, 157, 187, 188, 202, 205, 304, 305, 306, 307, 308, 309, 310, 325 Vaginal ................................ 100, 143, 324 Vestibular ............................................ 170 W Withdrawal ............ 47, 48, 56, 61, 65, 271
Index 329
330 Autism
Index 331
332 Autism
