Intervention and Support for Parents and Carers of Children and Young People on the Autism Spectrum
by the same authors How to Live with Autism and Asperger Syndrome Practical Strategies for Parents and Professionals Chris Williams and Barry Wright Illustrated by Olive Young ISBN 978 1 84310 184 0
of related interest The Complete Guide to Asperger’s Syndrome Tony Attwood ISBN 978 1 84310 495 7
All Cats Have Asperger Syndrome Kathy Hoopmann ISBN 978 1 84310 481 0
Access and Inclusion for Children with Autistic Spectrum Disorders ‘Let Me In’ Matthew Hesmondhalgh and Christine Breakey ISBN 978 1 85302 986 8
1001 Great Ideas For Teaching and Raising Children with Autism Spectrum Disorders Ellen Notbohm and Veronica Zysk ISBN 978 1 93256 519 5
Helping Children to Build Self-Esteem A Photocopiable Activities Book 2nd edition Deborah Plummer Illustrated by Alice Harper ISBN 978 1 84310 488 9
The Social Play Record A Toolkit for Assessing and Developing Social Play from Infancy to Adolescence Chris White ISBN 978 1 84310 400 1
Voices from the Spectrum Parents, Grandparents, Siblings, People with Autism, and Professionals Share Their Wisdom Edited by Cindy N. Ariel and Robert A. Naseef ISBN 978 1 84310 786 6
Intervention and Support for Parents and Carers of Children and Young People on the Autism Spectrum A Resource for Trainers Barry Wright and Chris Williams
Jessica Kingsley Publishers London and Philadelphia
First published in 2007 by Jessica Kingsley Publishers 116 Pentonville Road London N1 9JB, UK and 400 Market Street, Suite 400 Philadelphia, PA 19106, USA www.jkp.com Copyright © Barry Wright and Chris Williams 2007 Illustrations on pp.26, 44 and 52 Copyright © Olive Young 2007
All rights reserved. No part of this publication may be reproduced in any material form (including photocopying or storing it in any medium by electronic means and whether or not transiently or incidentally to some other use of this publication) without the written permission of the copyright owner except in accordance with the provisions of the Copyright, Designs and Patents Act 1988 or under the terms of a licence issued by the Copyright Licensing Agency Ltd, 90 Tottenham Court Road, London, England W1T 4LP. Applications for the copyright owner’s written permission to reproduce any part of this publication should be addressed to the publisher. Warning: The doing of an unauthorised act in relation to a copyright work may result in both a civil claim for damages and criminal prosecution.
Library of Congress Cataloging in Publication Data Wright, Barry. Intervention and support for parents and carers of children and young people on the autism spectrum : a resource for trainers / Barry Wright and Chris Williams. p. cm. ISBN-13: 978-1-84310-548-0 (pb : alk. paper) 1. Autism in children--Handbooks, manuals, etc. 2. Asperger's syndrome--Handbooks, manuals, etc. I. Williams, Chris, 1955- II. Title. RJ506.A9W75 2007 618.92'85882--dc22 2007014662 British Library Cataloguing in Publication Data A CIP catalogue record for this book is available from the British Library ISBN 978 1 84310 548 0 ISBN pdf eBook 978 1 84642 669 8 Printed and bound in Great Britain by Printwise (Haverhill) Ltd, Suffolk
Nurturing and development is a life-long process. We dedicate this to Kath and Peter Gladwin, and Maureen and John Wright, who were so instrumental in our early nurturing and development, and to Paul Williams and Julia Wright, whose continued nurturing (and tolerance!) we couldn’t do without.
Acknowledgements We would like to thank the following people for their help and support: Heather Bagley for her very helpful comments on our first draft; Chris Kavanagh for her ideas on the sensory interests exercise; Lucy Playford and Julia Wright for proofreading and for a series of helpful presentational ideas; and the child mental health team who work alongside us. As always, thanks to the parents who have encouraged us and generated lots of helpful ideas over the years. This course takes place in Yorkshire under the name ASCEND (Autism Spectrum Conditions – Enhancing Nurture and Development).
Contents Participants
9
Background to this Resource
11
An Introduction to Autism and Mindblindness
17
Session 2
Getting the Gist
55
Session 3
Language and Communication
69
Session 4
Preoccupations, Sensory Interests and Repetitive Behaviours
91
Imagination, Time Perception, Planning and Memory
110
Session 6
Managing Behaviour
133
Session 7
Exploring Individual Problems and Developing Strategies for Managing Behaviour (1)
176
Session 8
Strategies for Managing Behaviour (1)
182
Session 9
Visual Guides/Social Stories™ Workshop 212
Session 1
Session 5
Session 10
Session 11
Exploring Individual Problems and Developing Strategies (2) and Strategies for Managing Behaviour (2)
220
Consolidation, Questions and Party
228
Appendix 1A: Sample Leaflet for Professionals, to Encourage Parent/Carer Participation
235
Appendix 1B: Sample Leaflet for Parents/Carers, to Encourage Participation
237
Appendix 2: Sample Formal Letter Inviting Parents to Attend
239
Appendix 3: Pre-course Evaluation Questionnaire
241
Appendix 4: Sample Course Completion Certificates
244
Appendix 5: Course Evaluation Results
247
List of figures, handouts and OHPs
251
Participants Parents and carers This manual was originally written for facilitators wishing to run a course for parents and carers of children with autism spectrum conditions (ASCs). The course outlined in this manual is particularly aimed at parents of school-aged children. It can also be useful to include anyone involved in the care of the child, such as grandparents and the children’s teaching assistants if the parents/carers wish to invite them.
Siblings A much shorter version of the course may help siblings to understand ASCs. We would suggest, in particular, using the exercises in Sessions 1–5 and including time for them to share their own experiences and ask questions.
Professionals Additionally, with small adaptations, it can be a useful course for teaching professionals about ASCs and practical strategies for dealing with a variety of behaviours. This manual contains all the information that facilitators experienced in ASCs require to run this course. However, you may also wish to buy the book How to Live with Autism and Asperger Syndrome: Practical Strategies for Parents and Professionals (by Chris Williams and Barry Wright, 2004, Jessica Kingsley Publishers, London), which supplements the material in the course, including more detail and many more examples. Reference is made to the book throughout this manual in terms of suggested chapters for additional reading for facilitators. The course itself and the handouts at the end of each session should contain sufficient information to enable participants to complete the course with a good understanding of ASCs and management strategies; however, participants may value the additional material the aforementioned book offers. The homework sections make reference to additional optional reading from the book.
Background to this Resource
Introduction Welcome to the Intervention and Support for Parents and Carers of Children and Young 1 People on the Autism Spectrum. The course is aimed at parents and carers with children of school age who have received a diagnosis of autism or Asperger Syndrome. This manual gives a detailed description of a course based on a programme that the authors have been running in the National Health Service in York since 1999. It is written in session format, with exercises and handouts describing strategies for dealing with various behaviours and children with autism spectrum conditions (ASCs). (The handouts can be photocopied and/or copied onto acetates for use with an overhead projector.) Facilitators intending to use this programme should have a good understanding of ASCs and behavioural techniques, and experience of working with children and their families. Although each session is carefully laid out and has a clear structure, the course should be run with some flexibility in order to allow for the different needs of each group of participants. We believe that the most effective way of helping parents is to work in partnership with them, listening carefully to their needs and building on their expertise. As mentioned in the section on ‘Participants’ (page 9), the course draws on a book by the same authors entitled How to Live with Autism and Asperger Syndrome: Practical Strategies for Parents and Professionals (Jessica Kingsley Publishers, London, 2004). There is no requirement to buy the book as part of this course, although it does offer useful supplementary reading to those interested in going into the issues covered in this course in a little more depth. We started running this course in York in 1999 following a rapid growth in the numbers of children and young people on the autism spectrum we were seeing in our clinics. Often, parents were struggling to understand their children as they sought to find ways of managing a range of difficult behaviours. Many very competent parents were puzzled and confused by the fact that strategies they had 1
Whenever the text refers to parents of children with autism or Asperger Syndrome, it is intended that this also includes carers.
11
SUPPORT FOR PARENTS AND CARERS
used with their typically developing children were not effective with their children on the autism spectrum. Some were also feeling isolated, deskilled and disempowered. Many of the children, particularly those with Asperger Syndrome, had been diagnosed after the age of five. In 1999, there were no intervention and support programmes in the UK for parents of older children on the autism spectrum. Since our first course, we have developed and improved the material, in incorporating parents’ views and suggestions, and continue to evaluate each course. A copy of the evaluation questionnaire is included in the appendices to allow facilitators to feed back to the authors (see Appendix 3). We have also included the results of our evaluation, including comments from parents.
Overview Course aims By the end of the course, participants will be able to: ·
describe how children on the autism spectrum perceive the world
·
identify why children on the autism spectrum have some of the symptoms they display
·
apply this knowledge and understanding in addressing specific behaviours with their own child
·
use a systematic approach to think through the reasons for any behaviour, and be able to formulate plans to support the child to develop behaviours that are healthy for his or her development.
Using the manual Each session involves some teaching. The text also clearly indicates which sections require the use of handouts or specific exercises. Copies of all handouts, useful figures and OHPs are provided in copiable form at the end of the relevant session.
Principles The course should be delivered in a supportive environment in which participants can share their experiences and ideas. There will be flexibility to include participants’ preferences about course content and a focus on working in partnership with participants. They will be encouraged to reflect on the positive aspects of their children, as well as discuss the more challenging aspects of their children’s behaviour. If you plan to address the needs of children and young people with ASCs who also have severe developmental delay and/or severe verbal communication difficulties, we have found that the course is more successful if run separately for each group. One of the reasons for this is that the needs of the two groups are very 12
BACKGROUND TO THIS RESOURCE
different. For example, parents of children who have very little verbal ability find that the issues they are facing are very different from parents of children who are able to use language. We usually run two courses a year – one for parents of children with autism and one for parents of children with Asperger Syndrome or high-functioning autism (there is flexibility, depending on the child’s ability).
The course COURSE LENGTH
The course comprises 11 sessions. Each lasts for two hours with a break for refreshments in the middle. The sessions usually run in consecutive weeks where possible. NUMBER OF PARTICIPANTS
Courses can be run for both small and large groups of participants: we have run courses for between 5 and 20 participants successfully, but the course is most successful when run for the parents of around eight to ten children, which usually translates to around 12–15 people – a reasonable group size that allows people to feel comfortable about joining in discussions. Both parents are invited and grandparents are welcome too, should they wish to attend. This means that, in general, around 10 to 20 people attend the course. Professionals who work with the children can also be integrated into the group and it can also be run for professional groups. WHO C AN RUN THIS COURSE?
This course is designed to be run by qualified therapists, including child psychiatrists, clinical psychologists, community psychiatric nurses or any other therapist with experience of working with families of children with autism spectrum conditions. NUMBER OF FACILITATORS
The number of facilitators per session depends upon the group size. We recommend two facilitators for a group size of up to 10 or three to four for a group size of more than 10. For Sessions 7, 10 and 11 parents will undoubtedly get much more out of the experience with one individual facilitator per child represented. If you have access to a multi-disciplinary team, this can be a helpful source of additional facilitators, and also enhances the experience of both the family and the facilitators, who can use the experience of the programme in their own work. If this is not possible then parents can share a facilitator when discussing a similar behavioural issue. The number of facilitators recommended at the start of each session assumes a group size of 12–15. Any additional facilitators will also need a good understanding of behavioural techniques and ASCs. 13
SUPPORT FOR PARENTS AND CARERS
A step-by-step guide to organizing the course RECRUITING PARENTS ONTO THE COURSE
Clinicians who are involved in diagnosis should discuss the course with parents soon after the diagnosis, and these clinicians can be sent an explanatory leaflet about the course so that they can encourage parents to attend (see Appendix 1A). A similar leaflet could be made available to parents, explaining the course’s aims and structure (see Appendix 1B). A more formal letter, with course dates and additional information, can be sent out directly to prospective parents inviting them to attend the course (see Appendix 2). In the authors’ experience of using these recruitment methods, around half of those invited are usually able to attend. Some parents may bring the child’s grandparent(s) with them, which can prove very helpful, as when grandparents choose to attend, they are usually very supportive of the child’s parents, both emotionally and practically. Those unable to attend can defer to the next suitable group should they so wish and those who reply saying that they would like to attend are sent a confirmation letter. In advance of the course starting, parents should be asked to complete the evaluation sheets noted below. ·
Developmental Behaviour Checklist (DBC-P) – this is used as an outcome measure of changes in the child’s behaviour (see the section below on course materials (page 16)).
·
An evaluation scale (see Appendix 3) – this is a simple Likert scale, which is used to give a baseline measure of participants’ understanding of ASCs.
SESSION PLANNING
14
·
Location – it is recommended that a large comfortable room with a flip chart is used. If possible, the room should be set out with chairs in a semicircle facing the flip chart at the front to aid communication and so that everyone can see one another. Ideally, a table stacked with relevant books and resources will be positioned in the room for parents to browse or borrow.
·
Refreshments should be available in the room 15 minutes before the session starts.
·
Parents often prefer meetings in the middle of the day, as this gives them time to take children to school and collect them (e.g. 12.30 to 2.30 pm).
·
There is a further refreshment break. Participants can take the opportunity to browse through the books on the table.
·
Parents will be given materials throughout the sessions, and they may be given a folder to keep these in. Attention can be drawn to various books currently available. (For example, the aforementioned book written by the
BACKGROUND TO THIS RESOURCE
authors: How to Live with Autism and Asperger Syndrome: Practical Strategies for Parents and Professionals. As mentioned earlier, there is no requirement to buy this book in order to participate in the course, but it will offer participants opportunities for further reading and a deeper understanding. Other books favoured by the facilitators should also be mentioned.) SESSION STRUCTURE
The course comprises 11, two-hourly sessions. Each follows the broad format described below. ·
Recap of the themes introduced in the previous week and discussion of any issues related to the theme or reading (15 minutes).
·
Introduction: each week, facilitators introduce a new topic related to autism and Asperger Syndrome, with demonstrations and case examples (30 minutes).
·
Break (15 minutes).
·
Exercises: each session includes one or two group exercises for participants, which are fun and serve to reinforce the key messages of the week’s theme (45 minutes).
·
Group discussion: in this part of the session participants are invited to consider the ways in which the topic relates to their children, give examples and ask questions (15 minutes).
SESSION GROUND RULES
In addition to providing health and safety guidance, the facilitator will need to establish ground rules along the following lines. ·
It is important that participants feel safe to express themselves and reassurances about confidentiality should be made.
·
It is also important that participants respect the thoughts and feelings of others in the group.
·
Participants should be advised that they are under no pressure to participate in exercises if they choose not to.
·
The group should be informed that the names used in the course’s exercises and case studies are fictitious.
·
Mobile phones should be switched to mute.
·
Participants should know where the toilets and fire exits are.
15
SUPPORT FOR PARENTS AND CARERS
·
Each participant is asked to wear a name badge showing their first name (this can be sticky-back white squares, written on with a felt-tip pen or something more sophisticated if available).
The group may wish to add further ground rules. HOMEWORK/READING GUIDELINES
Each week a small amount of reading is recommended and homework handouts are provided for this. COURSE EVALUATION
The Developmental Behaviour Checklist (DBC-P) and the evaluation scale are each used at the beginning and end of the course to evaluate the course’s impact on parents’ understanding and knowledge of course topics. Participants can also be asked to complete a brief qualitative questionnaire at the end of the course (see the course satisfaction questionnaire, Handout 10.2). COURSE MATERIALS (NOT INCLUDED IN THIS MANUAL)
16
·
Research the various books currently available for helpful supplementary reading – for example, the book written by the authors (How to Live with Autism and Asperger Syndrome) or other books favoured by the facilitators.
·
Purchase the Developmental Behaviour Checklist (DBC-P) from www.med.monash.edu.au/spppm/research/devpsych/dbc.html or from Centre for Developmental Psychiatry, Monash Medical Centre, 246 Clayton Road, Clayton, Victoria 3168, Australia,
[email protected].
·
For Session 9, you will need a copy of Carol Gray’s video, Writing Social Stories with Carol Gray (VHS) (2000, Future Horizons). This can be purchased directly from the Gray Center, www.thegraycenter.org.
·
Paper and pens are needed for the sessions, as are labels so that parents can have a first-name badge. A selection of accessible, authoritative books on autism and Asperger Syndrome are recommended as a resource for parents. A flip chart is also required.
·
Specific resources are also required for each session. These are listed at the start of each session.
SESSION 1
An Introduction to Autism and Mindblindness
Learning outcomes This session is in part about getting to know other members of the group and the facilitators. In addition there are several participant learning outcomes. At the end of this session the participants will be able to: ·
identify the broad course structure
·
have a better understanding of autism spectrum conditions
·
describe what is meant by ‘mindblindness’
·
outline the range of mindblindness difficulties that children with autism spectrum conditions can experience
·
discuss the potential consequences of mindblindness.
Session aims ·
To start to get to know each other
·
To introduce the course
·
To introduce the theme of autism and mindblindness
Number of facilitators/therapists needed for this session ·
Two to three
17
SUPPORT FOR PARENTS AND CARERS
Materials and handouts required for Session 1 Training materials required ·
Paper and pens
·
Labels for participants to have a first-name badge
·
Books on autism and Asperger Syndrome
·
Flip chart
·
Toys to demonstrate the Sally–Anne test (two soft toys, two different containers with lids, and a small object that will fit inside both containers)
·
A Pringles tube or biscuit box with objects inside (e.g. crayons)
·
Overhead projector (or PowerPoint projector) to show OHPs
·
Copies of any current books that support learning around the course theme
·
A folder for handouts (if you choose to provide one)
Handouts ·
1.1 Breakdown of sessions
·
1.2 A brief explanation: what is autism?
·
1.3 Session 1 summary: mindblindness
·
1.4 Sally–Anne test of theory of mind
·
1.5 Gorilla exercise
·
1.6 Homework (Session 1)
·
Participants may also find it useful to have copies of OHPs 1.1, 1.2, 1.3 and 1.4
OHPs
18
·
OHP 1.1 The four domains of autism
·
OHP 1.2 Autism correlates
·
OHP 1.3 Symptoms
·
OHP 1.4 The autism spectrum: an example
·
OHP 1.5 The Sally–Anne test
·
OHP 1.6 The differences in the range of understanding of theory of mind in children with and without autism
·
OHP 1.7 The different rates of the development of theory of mind for four different young people
AN INTRODUCTION TO AUTISM AND MINDBLINDNESS
Suggested facilitator revision ·
You should have a sound understanding of this topic area before running the session; recommended reading is listed below.
DIAGNOSIS Diagnostic Statistical Manual of Mental Disorders (DSM-IV)
American Psychiatric Association (1994) Diagnostic and Statistical Manual of Mental Disorders, 4th edn. Washington, DC: APA.
Classification of Mental and Behavioural Disorders
World Health Organization (1992) Classification of Mental and Behavioural Disorders, 10th revision. Geneva: WHO.
MINDBLINDNESS
Baron-Cohen, S. (1995) Mindblindness: An Essay on Autism and Theory of Mind. Cambridge, MA: MIT Press. Baron-Cohen, S., Leslie, A. and Frith, U. (1985) ‘Does the autistic child have a “theory of mind”?’ Cognition 21, 37–46. Bogdashina, O. (2005) The Theory of Mind and the Triad of Perspective on Autism and Asperger Syndrome: A View from the Bridge. London: Jessica Kingsley Publishers. Happé, F.G.E. (1994) ‘An advanced test of theory of mind: understanding of story characters, thoughts and feelings by able autistic, mentally handicapped, and normal children and adults.’ Journal of Autism and Developmental Disorders 24, 129–154. Hobson, P. (1993) Autism and the Development of the Mind. Mahwah, NJ: Lawrence Erlbaum Publishers. Hobson, P. (2002) The Cradle of Thought. Basingstoke: Macmillan. Wimmer, H. and Perner, J. (1983) ‘Beliefs about beliefs: representation and constraining function of wrong beliefs in young children’s understanding of deception.’ Cognition 13, 103–128.
Introduction Group introductions ·
Welcome the participants as they arrive and invite them to write a first-name label for themselves, and help themselves to refreshments.
·
At an appropriate time invite the participants to sit in a semicircle.
·
Introduce yourselves to the participants.
·
The participants introduce themselves and, if they wish to, say a little about their children.
Course introduction ·
Explain some of the practical points regarding the course. For example, point out that each session is in two parts with a half-hour refreshment break in between.
19
SUPPORT FOR PARENTS AND CARERS
·
Describe the overall aims of the course, and emphasize the informality and flexibility of the sessions.
·
Alongside any fire and safety regulations you should agree the course ground rules with the participants (see page 15). Explain that all the participants have a great deal of expertise and that one of the aims of the group is that they will learn from each other. Confidentiality should be respected.
·
Outline the importance of being able to understand how children on the autism spectrum view the world before being able to understand their behaviour and know the best ways of helping them.
·
Introduce the idea that current theories (e.g. mindblindness and ‘getting the gist’) will be explained without technical language and using several practical exercises. These theories form the structure of the course and will inform the participants about ways of helping the child’s development and managing behaviours.
Give participants a breakdown of the sessions, as follows (Handout 1.1): 1. An Introduction to Autism and Mindblindness 2. Getting the Gist 3. Language and Communication 4. Preoccupations, Sensory Interests and Repetitive Behaviours 5. Imagination, Time Perception, Planning and Memory 6. Managing Behaviour 7. Exploring Individual Problems and Developing Strategies for Managing Behaviour (1) 8. Strategies for Managing Behaviour (1) 9. Visual Guides/Social Stories™ Workshop 10. Exploring Individual Problems and Developing Strategies (2) and Strategies for Managing Behaviour (2) 11. Consolidation, Questions and Party Highlight that topics discussed in the second half of the course (Sessions 6–10) can include:
20
·
developing social skills
·
developing communication skills
·
tantrums, aggression and frustration
·
feeding
·
toileting
AN INTRODUCTION TO AUTISM AND MINDBLINDNESS
·
soiling
·
sleeping
·
preoccupations
·
compulsions, routines and rituals
·
mannerisms and repetitive movements
·
fears about the future.
Discussion surrounding the above will vary from group to group. It is important to facilitate discussions by keeping the sessions informal and encouraging participants to offer their views and experiences, as this will set the tone for future groups. Successful groups are those in which participants feel comfortable enough to talk. Although there will be times when the facilitator(s) will be offering information to the group, this should always be supported through discussion. The facilitator(s) should have a good understanding of pertinent issues for families of children with a diagnosis on the autism spectrum.
What is autism? Explain to participants that they will all receive a handout (Handout 1.2) explaining autism and Asperger Syndrome. Use Figures 1.1 and 1.2, either as PowerPoint slides or on an overhead projector, to explain briefly what autism spectrum conditions (ASCs) are. Full-size photocopiable versions of these figures are featured as OHPs at the end of this session. Start with the circle in the centre of Figure 1.1 showing that medical research believes ASCs to be caused by something that goes wrong at the level of the brain. It is not 100 per cent clear exactly what this is as yet, although lots of research is going on. Certain parts of the brain do not work as well and this leads to symptoms/problems or behaviours in four main areas: the ‘four domains’ of autism. These are: ·
social problems
·
imagination delay
·
language and communication problems
·
repetitive or unusual behaviours, movements or preoccupations.
21
SUPPORT FOR PARENTS AND CARERS Social problems
Imagination delay
Repetitive or unusual behaviours, movements or preoccupations
Brain
Language and communication problems
Figure 1.1 The four domains of autism
What is it that goes wrong with the brain in each of these areas? Show the next picture (Figure 1.2) to demonstrate the functions of the brain that are affected leading to each of these areas of problem: ·
social problems (mindblindness)
·
imagination delay (imagination)
·
language and communication problems (language)
·
repetitive or unusual behaviours, movements or preoccupations (‘getting the gist’).
Mindblindness
Imagination
Delay in imagination
Problems with social understanding
Brain Language and communication problems
Language
Figure 1.2 Autism correlates
22
Repetitive or unusual behaviours, movements or preoccupations
Problems 'getting the gist' Anxiety Imagination problems
AN INTRODUCTION TO AUTISM AND MINDBLINDNESS
Explain that you will be covering each of these areas in depth as the course progresses. Next, show Figure 1.3, listing some of the symptoms seen in each of these areas (and the things that clinicians look for in assessment). Again, explain that you will have more time to discuss these as the group goes on. Poor understanding of social rules
Eye contact
Difficulty problem solving
Use of gestures Understanding emotions of others
Social smiling
Time perception difficulties
Little sharing of pleasure with others
Social problems
Little understanding of the abstract
Poor at turn-taking/ compassion
Little conversational give and take
Imagination delay
Literal thinking
Brain Language and communication problems
Repetitive or unusual behaviours, movements or preoccupations
Unusual preoccupations Sensory interests Sensory fears
Echo words and phrases
Intense preoccupations
Unusual accents, tone, pitch or way of speaking
Mannerisms or odd movements
Figure 1.3 Symptoms
Finally, explain that other things apart from autism can affect how a child behaves. Children may have very different temperaments, ranging from placid to very strong-willed. In terms of intelligence, they may range from lots of learning difficulties to very bright. They may be well able to concentrate or may have major problems attending and concentrating. Figure 1.4 shows the four domains of autism and how some of these things can range on the autism spectrum. All children are different and so may be at different points on each of these scales (as shown by arrows in the example in the figure). This is why all children on the autism spectrum are so different. In our experience, we have found it useful to return to these figures throughout the course as they offer a visual structure on which participants can hang the issues being discussed.
23
SUPPORT FOR PARENTS AND CARERS Cognitive ability
Attention, concentration and activity levels
Temperament
Social abilities
Freedom from repetitive behaviours, movements or preoccupations
Language and communication skills Imagination skills
Figure 1.4 The autism spectrum: an example
Frequently asked questions Many issues are raised at this initial session and throughout the course. Some of the topics covered may include: ·
the impact of the diagnosis
·
the role of grandparents
·
effects on siblings
·
embarrassment about the children’s anti-social behaviour
·
coping with comments from people who don’t understand.
Common questions include:
24
·
What is the difference between autism, Asperger Syndrome, atypical autism, pervasive developmental disorder not otherwise specified, and autism spectrum conditions?
·
Are there any cures?
·
Should we change his diet…give him vitamins…take her swimming with dolphins…?
AN INTRODUCTION TO AUTISM AND MINDBLINDNESS
·
Does the MMR vaccine cause autism?
·
Did we do something to cause it?
While some of these questions can be answered relatively quickly, others open up large topics in themselves. In such cases, it is often more constructive to note these and allow time where possible in subsequent sessions for further discussion if the group would like to do this. Finally, and most importantly, it is essential that while there will inevitably be a focus on the difficulties of the children and young people with ASCs, their strengths and abilities should also be celebrated. Children with ASCs can be very skilled in many different ways, have lots of fun and bring a great deal of joy to their families.
Break About 15 minutes.
Introducing the theme: mindblindness, or theory of mind On reassembling, introduce the concept of mindblindness and tell the participants that you will be giving them a handout on this (Handout 1.3). ‘Mindblindness’ refers to being blind to the minds of other people. It means that people on the autism spectrum have great difficulty understanding the point of view or the thoughts and feelings of someone else. Some researchers have called this poor ‘theory of mind’, as shorthand for saying that children on the autism spectrum have poor understanding of what other people are thinking or feeling: a poor understanding of the minds of others. Theory of mind (TOM) refers to our ability to make accurate guesses about what people might be thinking or feeling, or to predict what they are going to do, and it is a crucial skill for being able to get on socially. Where we have problems with this it is called ‘mindblindness’. A child with severe autism may have a totally impaired TOM but, more often, TOM is developmentally delayed. In other words, children on the autism spectrum develop these skills later and to a lesser degree than others. The concept of mindblindness is further described using the ‘Sally–Anne test’ (tell participants that this is covered in Handout 1.4). In reference to the demonstration outlined in the box on the following page, explain to the group that many young children with autism will answer ‘In the basket’, probably because that is where the child last saw it. They fail to recognize that Winnie has a different perspective – that is, they cannot put themselves into the mind of Winnie. They have poor theory of mind, or mindblindness. In the same way, children with mindblindness will not understand that Sally does not know that the marble has been moved from the basket to the box. They tend to say that Sally will look in the box, relying on their own experience or 25
SUPPORT FOR PARENTS AND CARERS
The Sally–Anne test Simon Baron-Cohen was the first person to use the term ‘mindblindness’ as a way of explaining some of the problems experienced by people on the autism spectrum. There is also a very simple test that is sometimes used in part of the assessment of younger children: the Sally–Anne test (Figure 1.5).
1. Sally has a basket. Anne has a box. Sally puts her marble in the basket.
2. Sally leaves the room.
3. While Sally is not there, Anne takes the marble and puts it in the box.
4. Sally comes back. Where does Sally look to get her marble?
Figure 1.5 The Sally–Anne test (after Wimmer and Perner 1983)
This is a straightforward way of explaining theory of mind.
Sally–Anne demonstration It can help to bring this test to life more for participants if facilitators do a live demonstration in much the same way as they might when testing young children. Take any two soft toys (e.g. Winnie the Pooh and Tigger), two containers (e.g. box with a lid and a basket with a cover), and an object (e.g. small ball). Make up a short story, with demonstrations (e.g. ‘Look, Tigger and Winnie are playing ball!’). After a few seconds say, ‘Winnie needs to stop playing now. He has to go to the shops so they have to put the ball away in the box.’ Ensure that the child knows that both characters are aware that the ball is in the box and see the lid going on the box. Say ‘Winnie is going to the shops now’ and take Winnie away, out of sight of Tigger and the child. Say, ‘When Winnie is shopping, Tigger takes the ball out of the box, closes the box, puts the ball into the basket and covers it up.’ (Make Tigger do this whilst you are speaking.) Then bring Winnie back from the shops and say to the child, ‘Winnie is back from the shops now. Where do you think he is going to look for the ball?’ 26
AN INTRODUCTION TO AUTISM AND MINDBLINDNESS
knowledge of where the marble is without considering the knowledge or experience of the other person. They don’t see things from Sally’s point of view, only their own. Around 80 per cent of typically developing four year olds realize that Sally will think the marble is where she left it – in the basket. Only about 20 per cent of four-year-old children on the autism spectrum will say that Sally will look in the basket. Considering the world from another person’s point of view seems to be very difficult for the majority of people on the autism spectrum. If we try to imagine being unable to understand how someone else is thinking or feeling or consider their point of view, we realize how confusing and frightening the world must seem and how difficult social interactions must be. It is not surprising, therefore, that young people on the autism spectrum appear to be very self-centred and behave differently from other children. This is not the same as selfishness: it is a problem they have in understanding other people.
Pringles false belief test Explain that this is a typical TOM test used as part of the diagnostic process. The clinician carrying out the test asks one of the child’s parents to wait outside the door for a moment. He shows the child a Pringles tube and asks the child what she thinks is inside. She will usually say ‘Pringles!’ The clinician then reveals that it is full of crayons – not Pringles. He then invites the child’s parent back into the room and says to the child, ‘What will daddy say if I ask him what is inside the tube?’ The child who has poor theory of mind will say ‘Crayons!’ as she does not appreciate the fact that the parent does not hold the same information about the contents of the Pringles tube as herself. She sees the tube from her point of view and has difficulty viewing it from her father’s point of view.
Explaining different degrees of mindblindness Mindblindness, or TOM, is not an ‘all or nothing’ concept. There are different degrees. The range of this skill varies in people on the autism spectrum as well as those who are not. Children are born with little or no real understanding that other people are separate from them, with different minds, ideas or emotions. They scream when they are hungry and they get fed, but have little conscious awareness that they are asking someone else (e.g. mum for food and a cuddle). Gradually, with time, they develop an awareness of others as separate through, for example, mirrored smiles and facial expressions. They learn who can meet their needs and how to ask others for things. When they begin to play they learn who will roll the ball to them and who will pick it up and run off. They become selective in their responses to others, based on their predictions about what others will do. When 27
SUPPORT FOR PARENTS AND CARERS
they get older still they choose their friends based on their interests and personalities. All such skills are to do with developing empathy – what researchers call theory of mind. However, in children with autism, the level of understanding of TOM is likely to be within a lower range or band, as shown in Figure 1.6.
Development of theory of mind
Sophisticated
Range of understanding of theory of mind for children without ASCs
Good Range of understanding of theory of mind for children with ASCs
Some
Poor Birth
6 yrs
12 yrs
18 yrs
Figure 1.6 The differences in the range of understanding of theory of mind in children with and without autism
Figure 1.6 shows the differences in the range of understanding of TOM in children with and without autism. It also demonstrates that the level of TOM skills of some children who are not on the autism spectrum can overlap with that of more able children on the autism spectrum. Some children with autism will struggle at a very basic level, while others will develop more understanding. Children and young people with a diagnosis of Asperger Syndrome or high-functioning autism will usually be more likely to develop a greater understanding of TOM. Figure 1.7 shows the development of TOM in four young people. In this figure, Neil and Rosie are not on the autism spectrum but develop TOM at different rates and to different levels of ability. Simon has Asperger Syndrome and develops TOM more slowly, but he achieves a good understanding as he approaches adulthood. Moses, who is more severely affected by his autism, makes progress as he gets older but does not achieve the same level of understanding. Mindblindness, or TOM, is a core difficulty for children and young people on the autism spectrum and very few will achieve a sophisticated level of understanding. TOM develops with age. However, the understanding of young people on the autism spectrum develops at a much slower pace and in a different way from that of more typical children. For example, George, a 13-year-old boy with Asperger Syndrome, has a similar level of understanding of TOM to that of his eightyear-old brother.
28
AN INTRODUCTION TO AUTISM AND MINDBLINDNESS Neil (no ASC)
Development of theory of mind
Sophisticated
Rosie (no ASC) Good Simon (Asperger) Moses (autism)
Some
Poor Birth
6 yrs
12 yrs
18 yrs
Figure 1.7 The different rates of the development of theory of mind for four different young people
Can we help children on the autism spectrum to learn theory of mind (TOM)? There is a great deal that parents and carers can do to help their children improve their understanding of TOM. This will be covered later in the course. Chapter 10 (‘Developing Social Skills’) of Williams and Wright, How to Live with Autism and Asperger Syndrome, gives an overview of numerous strategies that have been successful.
Understanding mindblindness This exercise should take between 15 and 20 minutes. ·
The participants are given the Gorilla handout for this exercise (Handout 1.5).
·
Read out the following text, which appears on the handout. ‘Along the sea front in San Francisco, just outside a row of shops, a young man famously makes his living by hiding behind a few branches broken from nearby trees. Dressed in a gorilla costume he watches and waits, unseen by most visitors, who are busy chatting, shopping or just enjoying the seaside atmosphere. Then he jumps out from behind his branches directly in front of someone passing by and shouts “Boo!” Most people are startled and might jump or scream before laughing and joining in with the joke. Small crowds often watch from the other side of the road and then give him small change in appreciation of the street entertainment. ‘In order to make some money out of this, he requires good TOM. He needs to be able to predict the reactions of other people. He needs to think carefully about his chosen “victim”. Try to put yourself in his place for a moment.’
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SUPPORT FOR PARENTS AND CARERS
Inform the participants that they are now the person waiting, hidden behind a few branches trying to make some money in the same way. They have to make decisions about which people they will choose to jump out on and which they will not. Ask them to allocate the numbers corresponding to the four decisions listed below to the descriptions of the people seen approaching, to indicate their decision. Advise them that there are no right or wrong answers. This is not a test! When they have finished, invite them to compare notes with the person sitting next to them.
The four decisions 1.
I definitely will jump out on this person or these people. I don’t have any worries about it.
2.
It will be fun to jump out on them. There is a small chance of some trouble but I will take the risk.
3.
I am very uncertain. There might be trouble if I jump out on them.
4.
I definitely will not jump out on them.
The ‘victims’ The potential victims approaching are:
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·
two teenage girls
·
a teenage boy
·
a middle-aged couple
·
an eight-year-old girl with a bleeding nose
·
a boy with a small dog
·
an elderly woman in a wheelchair
·
a security guard who is protecting someone famous
·
the local traffic warden
·
a woman with a baby in a pram
·
a mum with two children aged around eight and ten
·
a blind man
·
your best friend
·
two men and a Rottweiler dog
·
an elderly nun
AN INTRODUCTION TO AUTISM AND MINDBLINDNESS
·
your older brother
·
a ten-year-old boy whom you saw taking his sister’s ice cream
·
a policeman
·
a four-year-old child who is crying for her mum
·
your mum
·
your dad
·
the President of the USA with his security guards.
This exercise is usually very popular and people enjoy chatting to each other about their different answers. After about five minutes, you should open up a whole-group discussion by asking people to volunteer their scores for the two teenage girls and why they answered as they did. You can choose to go through the list in order or maybe pick out a few examples. The aim is to help the participants to understand how easily and readily they make very complex decisions based on their understanding about how different people may react and what the consequences may be. For example, they may have thought that there was no risk in jumping out on the teenage girls because the girls might scream and then laugh about the incident, causing people in the small watching crowd to find the event amusing. This might then put them in a good mood and make them more likely to give some money. They might have decided not to jump out at the blind man. They perhaps thought that he wouldn’t get the joke because he wouldn’t know that they had been hiding or that they were wearing a gorilla outfit, or they might have worried that the crowd might turn against them if they thought this was unkind. They are seeing things from his point of view but, more than this, they are guessing what the crowd will think about the reactions and feelings of the person they jump out on. Similarly, they might not choose to jump out on the US President for fear that his security guards might overreact. They are considering not just the thoughts and feelings of the President, but also those of the security guards and the people watching. They are holding several different people’s points of view in their mind as they make their decision about whether or not to jump out. Most of us make these kind of decisions immediately, intuitively and without reflection, but where do these skills come from? What must life be like if we can’t do this easily? These are important social skills that we take for granted but with which people on the autism spectrum struggle; it is no wonder that the social world may be a challenge for them. In order to make these decisions, we have to consider the thoughts and feelings of other people, and try to work out the likely effects of our actions on their behaviour. We have to think not only about the ‘victims’ but also about the effect on the crowd.
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SUPPORT FOR PARENTS AND CARERS
Intuitively we make a number of complex connections and decisions in a few seconds without even realizing it at the time. People on the autism spectrum find this very difficult. They have mindblindness, which means they have great difficulty in understanding how other people might think or feel, or how they might react. During this session, try to bring out the various different aspects of mindblindness. For example, when we try to understand what it might be like for a nun when a person in a gorilla suit jumps out on her, we can consider: ·
what she sees and what her sensory experiences are (e.g. she sees something different from us)
·
what she is anticipating or expecting in any given situation or environment, and how that differs from what we anticipate or expect
·
what her feelings are (e.g. fear)
·
what her thoughts are (e.g. ‘I am in danger’ or ‘This is funny’)
·
how she brings all this together in an interpretation of events (e.g. ‘A gorilla has escaped from the zoo’ or ‘Another student rag week!’)
·
what her plans are – what she might be wanting to do next or in the future (e.g. laugh and give money, run away or go to the police).
Most typical nine-year-olds understand that the different people listed as potential ‘victims’ in this exercise would react differently, and they would change their behaviour accordingly. Many nine-year-old children on the autism spectrum may not. They might: ·
treat all people in the same way, without making any variation to account for their age or authority (e.g. jump out on all people indiscriminately or jump out on no one); they may apply one rule for all
·
focus on their own needs only (e.g. their own enjoyment)
·
have difficulty understanding that their behaviour affects how others think or feel, and seem unaware of other people’s reactions (e.g. being upset).
However, as they grow older, they may develop more understanding. The difficulty seems to be that, for children on the autism spectrum, an understanding of other people’s thoughts and feelings does not occur intuitively. It has, more often than not, to be taught.
Group discussion Ask participants to consider ways in which mindblindness might affect their children’s behaviour. List examples on a flip chart and discuss why mindblindness affects that behaviour. Typical answers might include:
32
AN INTRODUCTION TO AUTISM AND MINDBLINDNESS
·
making poor eye contact with people
·
not readily using gestures such as pointing, beckoning and waving or making a ‘shhh’ gesture with their finger to mean ‘be quiet’; gestures usually communicate something to the mind of another person (e.g. pointing shows someone where to look)
·
having no or very few close friends of the same age; friendships are built around some understanding of the other person’s interests, feelings and attitudes
·
not showing their teacher or parents their drawings or work unless asked to; children generally show things for praise, encouragement or approval, but this behaviour relies on an understanding that the other person might give these things
·
finding it much harder to share than other children; sharing skills develop as a child tunes in to the needs of other people
·
not being good at taking turns, and wanting to be first all the time; turn-taking skills develop as a child tunes in to the needs of other people
·
showing apparent unconcern about other children’s feelings
·
not pursuing or enjoying pretend play with other children
·
talking ‘at’ people, and not really being concerned whether they are interested or bored with the topic being talked about
·
not understanding other people’s thoughts and feelings
·
not understanding that they are expected to change the way they behave depending on where they are or whom they are with
·
difficulties predicting what people might do next
·
failing to interpret different facial expressions or gestures
·
not understanding how their behaviour might upset other people
·
not understanding social rules
·
inability to express their own emotions appropriately.
Ask participants to consider ways in which mindblindness might affect some of the behaviour strategies that adults commonly use. Write their responses on a flip chart. Some typical answers might include: ·
strategies that use praise on its own as a motivator
·
strategies that encourage the child to seek adult approval
·
strategies that require a complex understanding of the emotions of others (e.g. ‘Don’t embarrass me in front of all these people’). 33
SUPPORT FOR PARENTS AND CARERS
Questions and answers Allow a few minutes at the end of the session for participants to put any questions they may have about mindblindness, or about anything else you have covered in the session.
Homework Distribute Handout 1.6 to participants, which includes details of their homework: ·
Read Chapter 4, ‘Mindblindness’, in How to Live with Autism and Asperger Syndrome: Practical Strategies for Parents and Professionals, by Chris Williams and Barry Wright (Jessica Kingsley Publishers, London).
·
Think of/watch out for some examples for the next session of the ways in which mindblindness affects your child.
Close the session.
Reference Wimmer, H. and Perner, J. (1983) ‘Beliefs about beliefs: representation and constraining function of wrong beliefs in young children’s understanding of deception.’ Cognition 13, 103–128.
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Handout 1.1
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Handout 1.1 Breakdown of sessions
Session 1: An Introduction to Autism and Mindblindness Session 2: Getting the Gist Session 3: Language and Communication Session 4: Preoccupations, Sensory Interests and Repetitive Behaviours Session 5: Imagination, Time Perception, Planning and Memory Session 6: Managing Behaviour Session 7: Exploring Individual Problems and Developing Strategies for Managing Behaviour (1) Session 8: Strategies for Managing Behaviour (1) Session 9: Visual Guides/Social Stories™ Workshop Session 10: Exploring Individual Problems and Developing Strategies (2) and Strategies for Managing Behaviour (2) Session 11: Consolidation, Questions and Party
Copyright © Barry Wright and Chris Williams 2007
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Handout 1.2
Handout 1.2 A brief explanation: what is autism? Everyone with autism or Asperger Syndrome is different. During this course you will meet other parents and professionals who know children with autism or Asperger Syndrome, and while there will be some things they have in common, there will also be lots of differences. Common questions posed by people attending this course are: ·
What is autism?
·
What is Asperger Syndrome?
The answer to these questions is that autism spectrum conditions (ASCs) are complex disorders that affect the development of the child in several ways. They occur because of problems within the brain. These are not fully understood as yet, and there is research going on all over the world to be clearer about this. There are four core areas of impairment in children with ASCs.For a diagnosis to be made, there will be significant problems in all four areas: ·
social
·
communication
·
repetitive and unusual behaviour
·
imagination.
Each of these areas warrants detailed assessment. Some symptoms in the social area are associated with something called mindblindness. This is something we will be covering in the course, but a brief explanation follows. As we grow we develop an understanding that other people have different thoughts, different emotions and a different point of view to our own. This healthy development is delayed or very delayed for children with Asperger Syndrome and ASCs. If you have this ‘mindblindness’, you are likely to have problems with: ·
eye contact
·
use of gestures and facial expressions in communication
·
playing with others and forming friendships
·
sharing and turn-taking
·
understanding the emotions of others and being compassionate (for example, when people are upset)
·
sharing excitement and pleasure with others.
Another core area is language and communication difficulties, which include:
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Copyright © Barry Wright and Chris Williams 2007
Handout 1.2 A brief explanation: what is autism?
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·
delay in language development with few attempts to compensate by using gesture (NB this is a problem for children with autism rather than Asperger Syndrome)
·
problems starting a conversation or carrying it on with give and take between the two people talking
·
problems with abstract language and a tendency to take things literally – for example, saying ‘Just get down to it Tom’ may lead to the child lying on the floor with his book; ‘Take your seats’ may lead to the child picking his seat up
·
unusual or odd speech
·
repeating language either in words, or using phrases from videos or somewhere else over and over again.
Children with autism or Asperger Syndrome have problems with repetitive and unusual behaviours or preoccupations with things. These include: ·
preoccupations of an intense nature
·
preoccupations with very unusual things
·
preoccupations of a sensory nature, or preoccupations with patterns, detail or the movement of objects
·
mannerisms and repetitive odd movements
·
intense routines or compulsions, and problems dealing with changes in routine.
Finally, another area of difficulty is imagination delay. This is: ·
delay in the acquisition of flexible imagination skills (e.g. it may take a long time to understand the concept of pretend and to be able to extend pretend play).
We will discuss this in more depth during the course. Many of these problems are part of the standard diagnostic criteria that specialists look for as part of the assessment. These usually take the form of either: ·
criteria from the American Medical Association – DSM-IV (Diagnostic and Statistical Manual of Mental Disorders), or
·
criteria from the World Health Organization – ICD-10 (International Statistical Classification of Diseases and Related Health Problems).
If the specialists find that there are significant problems with language or repetitive behaviours but not with social functioning, a diagnosis of ASC may not be Copyright © Barry Wright and Chris Williams 2007
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Handout 1.2 A brief explanation: what is autism?
appropriate. This does not mean to say that your child does not have needs that require attention, just that a different diagnosis or explanation is appropriate and that your child should be treated accordingly. For example, if he or she has lots of repetitive behaviours such as lining up toys in a particular way, insisting that they will drink only out of a certain-coloured cup or have to count up to ten before they can enter a room, but has good social, language and communication skills, then the possibility of obsessive compulsive disorder (OCD) may be explored. OCD is a condition that involves powerful obsessions (repetitive thoughts and ruminations) and compulsions (actions that the person feels compelled to complete) that impact on their daily functioning. Other children have problems with language but have healthy social development and no repetitive behaviours – this may be a specific language impairment (SLI).
Core problems in all settings If your child has an ASC,the behaviours are clear in all settings. A child’s ASC is not something that happens just at school or just at home,for example.The behaviours may be worse in some settings than in others, but careful assessment will help to make this clear.
Severity The specialists will pay particular attention to the severity of each of the symptoms. A diagnosis of ASC is likely to be made if there are several symptoms in the group of symptoms (i.e. social, language and communication, repetitive or stereotyped behaviours) that are judged to be severe. Less severe symptoms can make diagnosis more difficult and it may take a longer period of time. A specialist will assess this by comparing the behaviour of normally developing children of the same age or ability.
Other explanations Assessing professionals will want to make sure that some behaviours that look like ASCs are not caused by other factors like hearing problems,behavioural problems, developmental delay, speech and language impairment or certain types of brain damage. Conditions like dyspraxia (when the nerves and muscles work normally but coordinating complex movements is difficult) and dyslexia (where there are specific reading and spelling problems) are not on the autism spectrum although they may be found alongside ASCs in some people. Children with ASCs may of course also have some or all of the above difficulties. And some children may have some of these difficulties but not ASCs! For example, some children with speech 38
Copyright © Barry Wright and Chris Williams 2007
Handout 1.2 A brief explanation: what is autism?
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delay are also delayed in their social development and show some repetitive behaviours. However,as their language skills improve,their social skills develop and their behaviour becomes less repetitive,and ASC is no longer considered.The job of the specialist is to ensure that a correct diagnosis is made. If there are any uncertainties, they will discuss these with you and possibly delay making a diagnosis.
Diagnosis What are the differences between autism, Asperger Syndrome, atypical autism and high-functioning autism? There is a lot of confusion about the labels used to describe ASCs. Although a set of behaviours is described, these behaviours vary from person to person in terms of the severity of symptoms and the combination of symptoms. While children with autism may be more likely to have a low IQ,some can have a very high IQ. As with all children, temperament may be very different in different children with ASCs. Some are very placid while others may be very strong-willed. For this reason, it’s not unsurprising that two children with the same diagnosis can behave very differently. Another common confusion arises when doctors use one of the two internationally recognized diagnostic classifications and different words to describe the same diagnoses. The table below shows the different words that the two diagnostic classifications use for the same broad symptoms. DSM-IV and ICD-10 diagnostic classifications used to describe the same broad symptoms DSM-IV
ICD-10
Autistic Disorder
Childhood Autism
Asperger Disorder
Asperger Syndrome
Pervasive Developmental Disorder Not Otherwise Specified (PDD-NOS)
Atypical Autism
The term autism spectrum condition is not a single diagnosis.It refers to any one of the above diagnoses.A very brief description of diagnostic terms is included below. AUTISM (CHILDHOOD AUTISM OR AUTISTIC DISORDER)
Children and young people given this diagnosis will have shown impairments in social interaction, communication and imaginative play before the age of three years, as well as stereotyped behaviours, interests and activities. Copyright © Barry Wright and Chris Williams 2007
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Handout 1.2 A brief explanation: what is autism? ASPERGER SYNDROME OR ASPERGER DISORDER
Children and young people given this diagnosis will have shown impairments in social interactions, and restricted interests and activities, with no significant general delay in language, and will have average or above average range of intelligence. ATYPICAL AUTISM OR PERVASIVE DEVELOPMENTAL DISORDER NOT OTHERWISE SPECIFIED (PDD-NOS)
This diagnosis may be made when a child does not meet the full criteria for a diagnosis of autism or Asperger Syndrome but there is a severe and pervasive impairment in the areas affected by ASCs. HIGH-FUNCTIONING AUTISM
This diagnosis is sometimes given to indicate that the young person has the same difficulties as those described as having autism, but that they have an average or above average level of intelligence. Most specialists will be pleased to explain the process of assessment and diagnosis with you. If you are uncertain about anything don’t be afraid to ask or tell them if you disagree.The aim is always to complete an assessment that will provide information to help you to help your child.
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Copyright © Barry Wright and Chris Williams 2007
Handout 1.3
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Handout 1.3 Session 1 summary: mindblindness Theory of mind (mindblindness) This refers to being ‘blind’ to the minds of other people. It means that people with ASCs have great difficulty understanding the point of view or the thoughts and feelings of somebody else.Some researchers have called this poor ‘theory of mind’. Theory of mind (TOM) refers to our ability to make accurate guesses that help us to predict what people might be thinking or what they are going to do. If we try to imagine not being able to understand how someone else is thinking or feeling, or consider their point of view, we realize how confusing and frightening the world must seem and how difficult social situations must be. How does this show in the behaviour of our children? Some examples include: ·
initially no interest in other children
·
a preference for activities that do not depend on other people
·
focus on own needs only
·
frustration at not getting own way
·
being unable to understand others’ emotions and so a lack of empathy
·
need to be in control
·
lack of flexibility in interactions
·
use rigid rules
·
more take than give in give-and-take relationships
·
problems with turn-taking
·
treat all people the same – no variation according to age or authority
·
easily led by others due to failure to understand their motives
·
relate better to adults (who are more predictable)
·
difficulty understanding that his or her behaviour affects how others think or feel
·
not understanding about sharing pleasure or belongings
·
talking excessively about topic of own interest with no regard for the listener’s boredom.
Copyright © Barry Wright and Chris Williams 2007
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Handout 1.3 Session 1 summary: mindblindness
An exercise to help understand this Just imagine for a moment taking your biscuit and dunking it in someone else’s cup of tea. What would the different responses be if they were: ·
your mother at home
·
your best friend at their house
·
your local vicar after church
·
a man you don’t know in a service station
·
the invigilator during an exam that you are sitting.
In each of these examples you can guess how the other person might react and how they might feel.How might this help you choose whether or not to dunk your biscuit? Can you imagine what it would be like if you couldn’t guess what the other person would do, or what they would feel or think? Children on the autism spectrum exhibit different degrees of mindblindness. Some will struggle at a very basic level, while others will develop a more sophisticated understanding. However, their understanding develops at a much slower pace and in a different way to that of more typical children.
Development of theory of mind
Sophisticated
Range of understanding of theory of mind for children without ASCs
Good Range of understanding of theory of mind for children with ASCs
Some
Poor Birth
6 yrs
12 yrs
18 yrs
The differences in the range of understanding of theory of mind in children with and without autism
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Copyright © Barry Wright and Chris Williams 2007
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Handout 1.3 Session 1 summary: mindblindness
Neil (no ASC)
Development of theory of mind
Sophisticated
Rosie (no ASC) Good Simon (Asperger) Moses (autism)
Some
Poor Birth
6 yrs
12 yrs
18 yrs
The different rates of the development of theory of mind for four different young people
Copyright © Barry Wright and Chris Williams 2007
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Handout 1.4
Handout 1.4 Sally–Anne test of theory of mind
1. Sally has a basket. Anne has a box. Sally puts her marble in the basket.
2. Sally leaves the room.
3. While Sally is not there, Anne takes the marble and puts it in the box.
4. Sally comes back. Where does Sally look to get her marble?
After Wimmer, H. and Perner, J. (1983) ‘Beliefs about beliefs: representation and constraining function of wrong beliefs in young children’s understanding of deception.’ Cognition 13, 103–128.
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Copyright © Barry Wright and Chris Williams 2007
Handout 1.5
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Handout 1.5 Gorilla exercise Along the sea front in San Francisco, just outside a row of shops, a young man famously makes his living by hiding behind a few branches broken from nearby trees. Dressed in a gorilla costume he watches and waits, unseen by most visitors, who are busy chatting, shopping or just enjoying the seaside atmosphere. Then he jumps out from behind his branches directly in front of someone passing by and shouts ‘Boo!’ Most people are startled and might jump or scream before laughing and joining in with the joke. Small crowds often watch from the other side of the road and then give him small change in appreciation of the street entertainment. In order to make some money out of this, he requires good TOM.He needs to be able to predict the reactions of other people. He needs to think carefully about his chosen ‘victim’. Try to put yourself in his place for a moment. You are now the person waiting, hidden behind a few branches trying to make some money in the same way. You have to make decisions about which people you will choose to jump out on and which you will not. Write the numbers corresponding to the four decisions listed below next to the descriptions of the people you see approaching, to indicate your decision. There are no right or wrong answers. This is not a test! When you have finished,compare notes with the person sitting next to you.
The four decisions 1.
I definitely will jump out on this person or these people. I don’t have any worries about it.
2.
It will be fun to jump out on them. There is a small chance of some trouble but I will take the risk.
3.
I am very uncertain. There might be trouble if I jump out on them.
4.
I definitely will not jump out on them.
Copyright © Barry Wright and Chris Williams 2007
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Handout 1.5 Gorilla exercise
The ‘victims’ The potential victims approaching you are: c
two teenage girls
c
a teenage boy
c
a middle-aged couple
c
an eight-year-old girl with a bleeding nose
c
a boy with a small dog
c
an elderly woman in a wheelchair
c
a security guard who is protecting someone famous
c
the local traffic warden
c
a woman with a baby in a pram
c
a mum with two children aged around eight and ten
c
a blind man
c
your best friend
c
two men and a Rottweiler dog
c
an elderly nun
c
your older brother
c
a ten-year-old boy whom you saw taking his sister’s ice cream
c
a policeman
c
a four-year-old child who is crying for her mum
c
your mum
c
your dad
c
the President of the USA with his security guards.
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Copyright © Barry Wright and Chris Williams 2007
Handout 1.6
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Handout 1.6 Homework (Session 1) ·
Read Chapter 4, ‘Mindblindness’, in How to Live with Autism and Asperger Syndrome: Practical Strategies for Parents and Professionals, by Chris Williams and Barry Wright (Jessica Kingsley Publishers, London).
·
Think of/watch out for some examples for the next session of the ways in which mindblindness affects your child.
Copyright © Barry Wright and Chris Williams 2007
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OHP 1.1
OHP 1.1 The four domains of autism
Social problems
Imagination delay Brain
Language and communication problems
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Copyright © Barry Wright and Chris Williams 2007
Repetitive or unusual behaviours, movements or preoccupations
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OHP 1.2
OHP 1.2 Autism correlates
Mindblindness
Imagination
Delay in imagination
Problems with social understanding Brain Language and communication problems
Language
Repetitive or unusual behaviours, movements or preoccupations
Problems 'getting the gist' Anxiety Imagination problems
Copyright © Barry Wright and Chris Williams 2007
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OHP 1.3
OHP 1.3 Symptoms
Poor understanding of social rules Use of gestures
Difficulty problem solving
Eye contact
Time perception difficulties
Social smiling
Understanding emotions of others Little sharing of pleasure with others
Little understanding of the abstract Social problems
Poor at turn-taking/ compassion
Little conversational give and take
Imagination delay
Literal thinking
Brain Brain Language and communication problems
Repetitive or unusual behaviours, movements or preoccupations
Unusual preoccupations Sensory interests Sensory fears
Echo words and phrases
Intense preoccupations
Unusual accents, tone, pitch or way of speaking
Mannerisms or odd movements
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Copyright © Barry Wright and Chris Williams 2007
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OHP 1.4
OHP 1.4 The autism spectrum: an example
Cognitive ability Attention, concentration and activity levels Temperament
Social abilities
Freedom from repetitive behaviours, movements or preoccupations
Language and communication skills Imagination skills
Copyright © Barry Wright and Chris Williams 2007
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OHP 1.5
OHP 1.5 The Sally–Anne test
1. Sally has a basket. Anne has a box. Sally puts her marble in the basket.
2. Sally leaves the room.
3. While Sally is not there, Anne takes the marble and puts it in the box.
4. Sally comes back. Where does Sally look to get her marble?
After Wimmer, H. and Perner, J. (1983) ‘Beliefs about beliefs: representation and constraining function of wrong beliefs in young children’s understanding of deception.’ Cognition 13, 103–128.
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Copyright © Barry Wright and Chris Williams 2007
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OHP 1.6
OHP 1.6 The differences in the range of understanding of theory of mind in children with and without autism
Development of theory of mind
Sophisticated
Range of understanding of theory of mind for children without ASCs
Good Range of understanding of theory of mind for children with ASCs
Some
Poor Birth
6 yrs
12 yrs
18 yrs
Copyright © Barry Wright and Chris Williams 2007
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OHP 1.7
OHP 1.7 The different rates of the development of theory of mind for four different young people
Neil (no ASC)
Development of theory of mind
Sophisticated
Rosie (no ASC) Good
Simon (Asperger) Moses(autism)
Some
Poor Birth
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6 yrs
12 yrs
18 yrs
Copyright © Barry Wright and Chris Williams 2007
SESSION 2
Getting the Gist
Learning outcomes At the end of this session the participants will be able to: ·
explain the terms ‘getting the gist’ and ‘drive for central coherence’ in relation to autism
·
provide examples of how more typically developing children are able to derive the meaning of a situation using, for example, sensory experiences and memories
·
use examples to illustrate the challenges a child with an autism spectrum condition faces in ‘getting the gist’.
Session aims ·
To recap on the theme of mindblindness
·
To introduce the concept of getting the gist
·
To develop understanding about mindblindness
Number of facilitators/therapists needed for this session ·
Two
Materials and handouts required for Session 2 Training materials required ·
Paper and pens 55
SUPPORT FOR PARENTS AND CARERS
·
Labels for any new participants to have a first-name badge
·
Books on autism and Asperger Syndrome
·
Flip chart
·
Pictures of, for example, busy party, park
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Visual illusion diagrams and embedded figures (freely available on the Internet – try visiting www.michaelbach.de.ot/ or www.illusion-optical.com/Optical-Illusions/)
·
Overhead projector (or PowerPoint projector) to show the above-mentioned diagrams and figures
Handouts ·
2.1 Session 2 summary: getting the gist
·
2.2 Homework (Session 2)
Suggested facilitator revision ·
You should have a sound understanding of this topic area before running the session; for example, read Chapter 5 of How to Live with Autism and Asperger Syndrome: Practical Strategies for Parents and Professionals, by Chris Williams and Barry Wright (Jessica Kingsley Publishers, London); further recommended reading is listed below.
Frith, U. and Happé, F. (1994) ‘Autism: beyond “theory of mind”.’ Cognition 50, 115–132. Frith, U. and Snowling, M. (1983) ‘Reading for meaning and reading for sound in autistic and dyslexic children’ British Journal of Developmental Psychology 1, 329–342. Godwin Emmons, P. and McKendry Anderson, E. (2000) ‘Understanding sensory dysfunction learning, development and sensory dysfunction in autism spectrum disorders, ADHD, learning disabilities and bipolar disorder.’ Autism 4, 4, 406–425. Happé, F. (1994) Autism: An Introduction to Psychological Theory. London: UCL Press. Happé, F. (1996) ‘Studying weak central coherence at low levels: children with autism do not succumb to visual illusions. A research note.’ Journal of Child Psychology and Psychiatry 37, 873–877. Happé, F. (1997) ‘Central coherence and theory of mind in autism: reading homographs in context.’ British Journal of Developmental Psychology 15, 1–12.
Recap ·
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If any participants have missed the previous session it is important to have some mechanism for providing them with the relevant information. This may be done by, for example, having a ‘sweeper’ system where a team member meets with that family separately, or immediately before or at the end of this session. At the recap stage it is important to make sure that everyone is on board and understands what has been discussed so far.
GETTING THE GIST
·
Give participants a brief reminder of the main subject of the previous session: mindblindness. The essential messages to get across are that mindblindness is:
difficulty understanding other people difficulty guessing how other people might think, feel and behave (an ability that improves with age, although the improvement will be greater and quicker in those children with Asperger Syndrome than in those with autism).
·
Lead a discussion about mindblindness, referring to the relevant chapter of Williams and Wright or Handout 1.3.
·
Ask participants if they have had time to think about mindblindness in the course of the previous week, and whether they have come up with any further examples of where mindblindness may have impacted upon something their child has said or done.
Note to facilitators At some point in the course, participants may bring up the issue of the emotional impact of diagnosis on the family. Rather than allocating a part of a particular session to this, you may find that you need to be flexible and facilitate a discussion as it arises. More on this can be found in Chapter 3, ‘The Emotional Impact on the Family’, in How to Live with Autism and Asperger Syndrome. Such a discussion will allow participants to air their feelings about: ·
when they first noticed any differences in their child
·
how they felt when they became aware of these differences
·
what support they have had
·
how the diagnosis was made
·
what their experiences of services have been and how they have felt about this
·
how other family members have responded and their feelings about this.
The discussion will differ depending on the participants. For example, grandparents, teaching assistants or other professionals will all bring differing perspectives. The facilitator will need to guide the discussion, keeping it positive, but allowing people to share their experiences.
Introducing the theme: ‘getting the gist’ Introduce the theme of ‘getting the gist’. Introduce the term ‘drive for central coherence’ as a technical or professional term that is sometimes used for something
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that we prefer to call ‘getting the gist’. Tell participants that you will be giving them a handout (Handout 2.1) at the end of the session, which summarizes the topics covered in this session. As we get older we begin to try to give meaning to the events around us. Our brains are constantly bombarded with sensory experiences (the group will be asked to give examples of sensory experiences in the different modalities, such as sight, hearing, smell, taste, touch, and so on). We take these sensory experiences and use them to try to give meaning to events. We also use memories and other experiences to build this meaning. For example, if we are walking through a town and hear bells chiming we might wonder if the church bells are striking the hour and we may imagine a church nearby. If we then see several people dressed in fine clothes and a woman wearing a white dress and confetti being thrown we might assume that a wedding had just taken place. Intuitively, we seem to pull information together in order to understand a situation. Children and young people on the autism spectrum find this much more difficult and may focus on small details of the way something sounds, looks, feels or smells. Provide one or two demonstrations to explain ‘getting the gist’. The verbal and written explanations are usually omitted for non-verbal children.
Verbal explanation Explore with participants how we know that a chair is a chair. Ask the group to define what a chair is, what it looks like, how we would explain to someone else how to identify a chair. The reality is that there are thousands of different types of chair. They come in different colours, sizes, textures and shapes, and may not even have four legs. So how do we know that a chair is a chair? Over time, children usually learn to apply a series of rules and hierarchies that help them to recognize that a chair is a chair. A great deal of this appears to be intuitive to typically developing children. Nobody teaches them chair recognition rules, or rules for recognizing anything else for that matter. However, if they see a chair that is very different to any chair they may have seen in the past, they still recognize it as a chair. They are using skills to understand the ‘chairness’ of something. Some children with autism may struggle with this, or with categorizing things without using rules or the details of things to guide them. Lead a discussion about how children on the autism spectrum learn to develop these skills later than typically developing children, and apply rules and hierarchies about meaning in a much less flexible way. One boy on the autism spectrum, for example, had to learn about fruit and categorization by repeatedly asking questions such as ‘Dad…is a banana a fruit?’ However, he also asked whether a shoe, a book, bread, peas, and so on, were fruits. 58
GETTING THE GIST
Similarly, children and young people on the autism spectrum can appear to be very literal in their understanding of verbal requests. Often this is related to their failure to ‘get the gist’. For example, if we were in a classroom and our teacher said ‘Take out your pencils and paper’, we might assume that we should put our pencils and paper on the desk in front of us, in preparation for writing something. Some children on the autism spectrum, however, may fail to use context in order to help them make sense of the request and may simply walk out of the room with their pencils and paper. Participants may have other examples that you can discuss briefly.
Visual example
Circulate pictures of busy places or situations that children and young people may be familiar with (e.g. a park or a party). Ask the participants to say what they think is going on in the picture. Most people will say things like ‘park’ and ‘party’ for the examples given here. Discuss the fact that when children on the autism spectrum are asked to do this they will often focus in on a particular detail. For example, they may see a ‘feather’ on the picture of a party and want to talk about it; they may see a ‘ladder’ on the picture of a park and, when asked what is happening on this ladder, they may say ‘The boy is climbing up the ladder’; when asked why, they may say ‘He is waving.’ It may take some time to get to the fact that the ladder is part of a slide. The child has not naturally found the overall meaning of the picture (e.g. park) and has not even found the overall meaning of the ladder as part of a slide, but has focused in on a detail.
This demonstrates visual problems with ‘getting the gist’.
Embedded figures and visual illusions Using an overhead projector, show participants embedded figures tests and visual illusions (these are freely available on the Internet – some helpful web addresses are provided in the ‘Training materials required’ section at the start of this session). Make the point that children on the autism spectrum can be better at these than other, typically developing children of the same age. Similarly, participants who tend to ‘get the gist’ may find it difficult to disentangle patterns or shapes from a picture where an overall meaning tends to dominate; if children and young people cannot ‘get the gist’ then this domination does not take place for them, so finding the embedded figure might be easier.
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Continue the discussion, exploring whether the participants can think of any examples to demonstrate where their children are good at this. Encourage participants to consider whether this exercise has any resonance with their experiences of their children.
Written example Write one of the following sentences on the flip chart: ‘The girl had a tear in her eye’ ‘The shop assistant gave the woman a belt’
Ask participants what they think the sentence implies is going on. Most people immediately discuss crying for the first example and a shop assistant handing a woman a belt for the second. Next, ask the group how they know that the word ‘tear’ means a tear in the eye as opposed to something that is torn. Would the sentence have been read differently if it said ‘There was a tear on the leaflet the girl was reading’? Similarly, ask them how they know that the word ‘belt’ does not refer to the shop assistant hitting the woman. Discuss this with the group. It will become apparent that they have all immediately jumped to a conclusion (the right one!) about the meaning of these words; this is because they have looked at the context of the sentence and understood the meaning by referring the detail in a specific way to the context and back again. They have done this immediately, without having to consciously think about it. Their brains are ‘getting the gist’ automatically. Ask participants to give examples of how their children have had difficulties ‘getting the gist’ of what is going on in everyday situations. Discuss these. Finally, ask the participants to imagine that they have been beamed down from the USS Enterprise into a room. Ask them to consider where they might be. Explain that the room has a bare wooden floor and pictures on all the walls. There is a man in a blue suit, wearing a hat. People are milling about looking at the pictures. Ask them where they are. Most participants will quickly realize that they are in an art gallery. Ask them to imagine being there. How long after being beamed in would they realize they were in an art gallery? Half a second? One second? How do they do this? They don’t need to list things systematically or work it out logically – they just know intuitively and very quickly that it is an art gallery. This is intuitive and it is a ‘getting the gist’ skill. Children and young people on the autism spectrum have much more difficulty doing this.
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Break About 15 minutes. On reassembling, recap that the group has spent some time discussing how children on the autism spectrum may focus in on detail rather than being able to consider the whole. Tell participants that you will now work through an exercise to illustrate this in more detail.
Ten-pin bowling Lead a discussion about what a child on the autism spectrum who goes ten-pin bowling might enjoy and what he/she might be interested in, compared to what adults in the same situation would be interested in. Mark a sheet of paper on the flip chart so that it is divided in two. Ask participants to give examples of things the child on the autism spectrum might enjoy, and note these on one half of the page; ask them for examples of things that adults might enjoy, and note these on the other half. You should end up with two lists rather like those reproduced below. Things adults might enjoy: ·
company
·
competition
·
social interaction
·
relaxation
·
enjoyment
·
watching others enjoy themselves
·
skill
·
strike
·
winning
·
having a laugh
·
meal afterwards
·
trip away from the children
·
chatting with friends
·
socializing
·
sense of occasion
·
improving.
Things children on the autism spectrum might enjoy: ·
lights
·
signs
·
computer
·
balls (colour, size, movement)
·
watching the ball coming out
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watching the skittles falling over
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looking at the slot machines
·
sounds
·
tapping the floor
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looking at the holes in the balls
·
scoring system
·
sliding along the floor
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·
winning
·
mechanisms.
·
ramp
Ask the participants about the differences between the two – for example, the child’s enjoyment is: ·
related to objects
·
related to sensory interests
·
related to pattern and detail
·
very specific and easy to define
·
not much to do with people
·
predictable
·
concrete.
Whereas the adults’ enjoyment is: ·
related to the whole event
·
related to the social experience
·
related to fun, having a laugh
·
interrelated
·
abstract.
The social event was the main focus of attention for the adults, who had no difficulty pulling together ideas about the whole situation to do with bowling. For the child, however, the focus of attention was around the detail rather than an appreciation of the whole event. The child failed to ‘get the gist’.
Group discussion Lead a discussion about how children on the autism spectrum have much more difficulty ‘getting the gist’. Ask the participants whether they have any examples of their own of how their children have misunderstood the meaning of a sentence because they have not ‘got the gist’. Give some examples. Here is one that you might use: a group of children were asked to write an essay entitled ‘Was the Victorian era a golden era?’. One child, who had Asperger Syndrome, just wrote ‘No’, and got into trouble for it. He had not ‘got the gist’ that it was not a simple answer that was being sought, but an essay. This is a useful example of how some children have difficulty understanding intuitive meaning and ‘getting the gist’ of meaning by referring the context of what is going on to the detail of the question they have been asked. This is one of the reasons why literal thinking is common in autism: for example, when asked ‘Joshua, take your seat please’, Joshua picks up his seat and says ‘Take it where, sir?’ Ask the participants to give some examples of the difficulties associated with not being able to get the gist in areas such as:
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·
social gatherings
·
relationships
·
distractions
·
not understanding social games.
You might like to write these up on the flip chart. Note how many of them occur in social situations. Next, ask participants to consider ways in which getting the gist might affect some of the behaviour strategies that adults commonly use. Some typical answers, which can be written up on the flip chart, might include: ·
strategies that expect a child to have a complex understanding of
·
social rules expectations of differing behaviours in different situations social meaning (e.g. camaraderie, banter)
strategies that stray away from the clear and the concrete, and into abstract ideas.
Further discussion: skills and strengths This is often a good point to talk about the more positive traits the participants’ children have and it is helpful for them to share these with the group. It is important to refer to these regularly, as appropriate, throughout all sessions. Examples may include: ·
drawing
·
good memory (for scripts, conversations, routes, timetables, and so on)
·
building with Lego
·
spatial awareness
·
statistical information
·
in tune with animals
·
computers and technology.
Questions and answers Allow a few minutes at the end of the session for participants to put any questions they may have about ‘getting the gist’, or such as topics discussed in the previous session, such as mindblindness.
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Homework Distribute Handouts 2.1 and 2.2 to participants, explaining that the latter includes details of their homework: ·
Read Handout 2.1, ‘Session 2 summary: getting the gist’.
·
During the next week, look out for examples of a child not ‘getting the gist’.
Close the session.
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Handout 2.1
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Handout 2.1 Session 2 summary: getting the gist Central coherence (getting the gist) When we see something – whether it is a picture or sentence in a book, or something in the real world – it is full of detail.Present in a picture there are lots of colours, shapes and sizes, and things. Many of us have the ability to draw together lots of information from a situation in order to make sense of it. This is called the ‘drive for central coherence’ (we call it ‘getting the gist’). For example, if we heard church bells and saw a large group of people dressed in fine clothes and hats, throwing confetti at a couple outside a church, we might guess that a wedding was taking place. Or if we were sitting in a classroom and the teacher said ‘Take your pencils out’, we might understand that a lesson was about to begin and we would be expected to write something down. Children with autism appear to experience great difficulty in drawing together information in this way to understand the gist of what is expected from them. This is especially so in social situations. In the first example, the child with autism might focus on the church bells or the pieces of paper floating around, but fail to recognize the event as a wedding. In the second example, he might quite literally take his pencil out of the room. In other words, children with autism have difficulty getting the gist. They may not understand the overall meaning of something when presented with the details. They may become preoccupied with the detail. For instance,they may become fascinated by a particular word or,in a picture,they may count the stripes on the wallpaper or be fascinated by the spinning top on the floor, and pay no attention to other things in the picture. Children with autism have difficulty getting the gist in a way that other, typically developing children do not. This may make the social and educational world very difficult for them indeed.
Practical problems associated with not getting the gist These might include: ·
the child may focus on some particular aspect of an object, such as the wheel or door of a toy car, rather than use it as a miniature car with which to play pretend games
·
he may focus on some tiny detail in a picture or photograph, and hence see a feather rather than a picture of his grandmother wearing a hat with a feather in it
Copyright © Barry Wright and Chris Williams 2007
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Handout 2.1 Session 2 summary: getting the gist
·
as the child with autism will not quickly ‘get the gist’ of the actions or words of others, she may feel more comfortable with familiar routines; going to a birthday party may be so unfamiliar and unpredictable that it creates enormous anxiety and distress for the child
·
difficulty organizing – without the concept of an overall plan it is difficult for the child to organize himself
·
the child may misinterpret the situation/picture/sentence
·
he may be slower in processing information
·
she may have difficulty thinking about abstract concepts
·
he may learn by rote rather than intuition (e.g. if he sees a sign that says ‘No swimming’, he may literally stop swimming)
·
he may focus on tiny detail rather than the whole picture
·
she may show more interest in patterns/sensations/music.
Example: ten-pin bowling To help illustrate some of the difficulties with poor central coherence you made a list of the types of things you would enjoy if you were to go ten-pin bowling. You then listed the types of things that a child with an autism spectrum condition might enjoy if he or she were to go bowling.Some of the things you might have mentioned are listed below. Things you might enjoy:
Things a child with an ASC might enjoy:
·
company
·
lights
·
competition
·
signs
·
skill
·
computers
·
strike
·
balls
·
winning
·
skittles
·
having a laugh
·
sounds
·
meal afterwards
·
tapping the floor
·
trip away from the children.
·
atmosphere.
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Copyright © Barry Wright and Chris Williams 2007
Handout 2.1 Session 2 summary: getting the gist
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The differences between the two are clear in that the child’s enjoyment was: ·
related to objects
·
related to sensory interests
·
related to pattern and detail
·
very specific and easy to define
·
not much to do with people
·
predictable
·
concrete.
whereas the adult’s enjoyment was: ·
related to social aspects of the experience
·
more general
·
inclusive of more abstract ideas
·
related to the whole event
·
related to fun, having a laugh
·
interrelated.
Copyright © Barry Wright and Chris Williams 2007
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Handout 2.2
Handout 2.2 Homework (Session 2) ·
Read Handout 2.1, ‘Session 2 summary: getting the gist’.
·
During the next week, look out for examples of a child not ‘getting the gist’.
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Copyright © Barry Wright and Chris Williams 2007
SESSION 3
Language and Communication
Learning outcomes At the end of this session the participants will be able to: ·
describe the problems with communication experienced by children on the autism spectrum
·
identify how these problems with communications might make a child on the autism spectrum feel
·
outline the types of behaviours that might result from problems with communicating.
Session aims ·
To recap on the themes of mindblindness and ‘getting the gist’
·
To introduce the issues associated with language and communication difficulties
Number of facilitators/therapists needed for this session ·
Two
Materials and handouts required for Session 3 Training materials required ·
Paper and pens
·
Labels for any new participants to have a first-name badge 69
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·
Books on autism and Asperger Syndrome
·
Flip chart
Handouts ·
3.1 Session 3 summary: language and communication
·
3.2 Twins
·
3.3 Twins analysis sheet
·
3.4 Idioms
·
3.5 Homework (Session 3)
Suggested facilitator revision ·
You should have a sound understanding of this topic before running the session; for example, read Chapters 8 and 11 of How to Live with Autism and Asperger Syndrome: Practical Strategies for Parents and Professionals, by Chris Williams and Barry Wright (Jessica Kingsley Publishers, London); further recommended reading is listed below.
Bogdashina, O. (2004) Communication Issues in Autism and Asperger Syndrome: Do We Speak the Same Language? London: Jessica Kingsley Publishers. Happé, F. (1994) Autism: An Introduction to Psychological Theory. Philadelphia, PA: Psychology Press.
Recap ·
If any participants have missed one or both of the previous sessions, it will be necessary for a member of the team to bring them up to speed on the topics covered so far. This could be done between sessions, or immediately before or at the end of this session.
·
Give participants a brief reminder of the main subjects of the previous sessions: mindblindness and ‘getting the gist’.
·
Lead a discussion about getting the gist, referring to the relevant chapter of Williams and Wright or Handout 2.1.
·
Ask participants if they have any examples to share from their recent experiences of their children’s mindblindness or difficulty in getting the gist.
To reinforce the concepts of getting the gist and mindblindness a ‘recap exercise’ should be run at this point.
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Recap exercise: the party ·
Read out the example below of twins who go to a birthday party. Explain that the children are aged between four and five. One facilitator can read out the experiences of the child with an ASC while the other reads out the experiences of the typically developing twin.
·
Provide participants with a copy of Handout 3.2.
·
Ask participants to decide:
which twin has an ASC which descriptions are to do with mindblindness or theory of mind (TOM) which relate to (not) getting the gist.
The twins story 1. Ben: The car stops. There is a screeching noise. That must be the brakes. They are noisy. Tony: The car stops. There is a screeching noise. It is noisy. It is not nice. 2. Ben: My mum gets out of the car. There is a smell of smoke. That comes from the back of the car. I think my dad calls it the exhaust. Tony: My mum gets out of the car. There is a smell of smoke. There are stones on the floor. I pick one up. It feels hard and gritty. There is a stripy fence. One, two, three, four… I like the patterns I see when I walk by. I hear screeching noises. I put my hands on my ears. I don’t like it. I see a puddle. Splash, splash, splash. Nice noise. Mum says, ‘No, Tony.’ 3. Ben: I see balloons hanging on the side of the house. A mix of different colours of balloons. Hey, I wonder if there is something fun going on here? Tony: I see a window and a door. I see balloons hanging on the side of the wall. A mix of different colours of balloons. Blue and red and green and pink balloons. There are 11: two blue, two red, two green and five pink. I’ll count that again. Two blue, two red, two green… 4. Ben: Mum takes my hand. That makes me feel safe because I might be meeting some new people and that might be scary. Tony: Mum takes my hand. It feels rough. We walk towards the wall. I want to count the balloons again.
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5. Ben: We walk towards the house. I hear some shouting. It is children’s voices. There is also some music playing. It sounds like nursery rhymes. Hey, this must be a place for kids. That’s good. This is exciting. I wonder what will happen next. I’ll hold on to my mum’s hand for a while. She will make sure I’m OK. Tony: We walk towards the wall. I hear lots of different noises. I don’t like this at all. What is this? I don’t know this. This is scary. I don’t like my hand in that hand. I need to go now. 6. Ben: We get to the door. My mum presses a button. That must be the bell. I didn’t hear anything ring, but a lady is opening the door. She is smiling and she says ‘Hello’ to my mum, and then ‘Hello’ to me. She looks happy and kind. I like her. She offers me her hand. She has a nice perfume. I look at my mum. Is it OK to go with her? My mum smiles and nods. She looks relaxed and happy for me to go. I let go of my mum’s hand and take the lady’s hand. Tony: We get to the door. Mum presses a button. A big gold button. It shines a lot. The door is opening. A grown-up is there. I hear ‘Hello’ twice. The lady’s hand comes towards me. What is it for? I don’t want it. The hand takes my hand. It is warm. There is a very strong sweet smell. This is scary. I know that hand but not this new one. 7. Ben: ‘Shall I take him to meet the others, Barbara?’ she says to my mum. My mum smiles again. ‘Thank you, Joanne.’ My mum knows this lady and they seem to like each other. I wonder who she is. Maybe she is the mum of one of my friends. Tony: I hear some sounds and the word ‘meat’. I don’t like meat. This is all strange. I don’t like it at all. 8. Ben: She leads me towards a door. I hear more noise. I hear a voice I have heard before. It sounds like my friend. The door opens. There are lots of colours in this room. There are toys on the table. I see a cake on the table and it has candles on it, and there are lots of presents wrapped up in coloured paper. Hey, this must be a party. Tony: I hear more noise. I hear a voice I have heard before. The door opens. There are lots of colours in the room. The wallpaper is yellow with blue stripes. One, two, three, four, five, six, seven… The hand pulls me into the room. There is a TV. I see videos on the shelf. I see a ‘Thomas the Tank Engine’ video. I see a yellow car. The wheels spin round and round. I like that. There is paper on the floor and books and coloured things on the table. I see a cake on the table and it has candles on it. Five. Four are blue and one is red.
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9. Ben: ‘Hi, Ben,’ says my friend, Alistair. That reminds me who that lady is. It is Alistair’s mum. He is nice, so she might be too. This must be his house and it must be his party. Tony: ‘Hi, Tony,’ I hear. I know this voice. I see him during the day sometimes. He takes my trains from me. 10. Ben: There is lots of smoke coming from those candles. I hope the wax doesn’t get on that nice cake. It looks yummy. I wonder when I get to eat some. I suppose I’ll have to wait until Alistair blows out the candles. Tony: There is lots of smoke coming from those candles. It swirls in the air in spinning, spinning patterns. That is nice. I like that. I will watch that. The cake looks yummy. I shall eat some now. It feels soft and sticky. ‘No, Tony.’ I put my hands on my ears. 11. Ben: Alistair likes to play and he likes me.‘Hey Alistair, let’s go and play!’ Tony: ‘Aa Aa Aaaa Aa!!’ Acknowledge that we cannot fully understand what is going on in a child’s life, and so these are guesses, then ask who the participants think is the child with an ASC. ·
Tony is the twin who has an ASC.
Distribute Handout 3.3 to participants. Some of the following points may be useful in the ensuing discussion. The aim is to help participants to recognize that some of the types of difficulties children experience are related to mindblindness (M) and not getting the gist (G). 1. (G) Tony focuses in on the sensory experiences (the noise of the car). Ben works out from the context that the screeching sound is to do with the brakes. 2. (G) Tony focuses in on the sensory experiences (the smell of the smoke, the feel of the stones, the pattern of the stripy fence). Ben works out from the context that the smell is to do with the exhaust. (M) Ben remembers what his dad has said in the past: ‘I think my dad calls it an exhaust.’ He is possibly thinking, ‘That’s what my dad would think or say.’ He is able to think about what his dad thinks. Ben is showing he can use TOM. 3. (G) Tony sees windows, walls, doors and balloons. He sees things in parts. Ben recognizes that this is a house. He is able to put all the parts together to see them as a whole. Ben also recognizes that the balloons mean that there is a ‘fun’ situation here. He is making a good guess about what might be happening, whereas Tony is mostly interested in focusing on counting the balloons he sees. 4. (G) Tony focuses on the sensory experience of his mother’s rough hand. Ben takes comfort in holding his mum’s hand. He knows that this situation is out of the ordinary and might be scary. 73
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5. (G) Tony is focusing on the noise. He has not been able to bring together all the clues about the situation to make a guess that it might be fun. Ben hears music and adds this information to all the other clues he has that this could be exciting. (M) Ben hears children’s voices; he is able to make some guesses about how they might be feeling by the excited tone of their voices. To Tony this is more unpredictable noise. 6. (G) Ben can work out from the context that the button his mum presses is the door bell. Even though he doesn’t hear anything, he knows what this situation means. Tony concentrates on the shiny button and then suddenly sees a grown-up and a hand. He also focuses on the smell. (M) Ben seems reassured by the lady’s smile and kind voice. He is able to guess from her facial expression that she is happy. He also knows from his mother’s facial expression what she thinks about the lady. His mum’s smiles and nods mean that this is a safe person and that it’s OK to go with her. He is displaying TOM; he is not mindblind. Tony is unaware of his mum’s facial expression and concentrates only on the scary new hand. 7. (G) Tony focuses on the word ‘meat’. He does not use the word in the context of the sentence. (M) Ben knows from his mother’s expression that she knows and likes the lady. He can also guess who she might be. 8. (G) Tony sees individual objects: TV, video, stripes, the wheels of a car, paper, cake and candles. Ben sees the whole picture; he quickly puts together all the aspects of this situation and realizes that it’s a party. 9. (M) Ben recognizes Alistair as his friend. He talks about his personality and knows that he is a nice person. He is also able to think about what sort of a person Alistair’s mum might be. Tony knows what Alistair does (‘he takes my trains’); he does not think about his personality. 10. (G) Ben knows intuitively that this is a birthday cake and that the social rules in this context say that everyone has to wait for Alistair to blow out the candles before they can eat the cake. Tony isn’t aware of these social rules. Instead he focuses on the sensory experiences of the smoke and the feel of the cake. (M) Tony is not able to consider what Alistair’s mum might think if he plays with the icing on the birthday cake. So he cannot predict the outcome and is upset by Alistair’s mum shouting. 11. (M) Ben is able to understand what Alistair might be thinking or feeling. He knows he likes to play and he knows Alistair likes him. This is all very confusing for Tony, who prefers to be left alone.
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Introducing the theme: language and communication Introduce the concept of language and communication. Language is usually delayed in autism. In Asperger Syndrome the development of language itself is not delayed but there are usually problems with the way language is used or the social use of language. You can tailor your presentation to the needs of the participants (whether they are parents of children with autism, Asperger Syndrome, or a mixed group). Tell participants that you will be giving them a handout (Handout 3.1) at the end of the session, which summarizes the topics covered in this session.
Children with autism Children and young people with autism will have delayed language. First words and phrases may not appear until after the age of two or three years. Some children with autism may have been able to use a few words earlier than this, although some may have stopped using these for several months. Some children with autism may have little or no language when they are older. There is a lot of variation between children on the autism spectrum. Children with autism may have difficulty with: ·
learning to use language and how to communicate
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learning to understand other people’s language
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using gesture to communicate
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understanding other people’s gestures
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repetition of phrases from videos or films
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the use of adults’ hands as if they were tools, to get an adult to do something for them (e.g. putting an adult’s hand on a packet of biscuits to indicate that the child would like them to open it for them).
Children with Asperger Syndrome Children with Asperger Syndrome may have difficulty with: ·
understanding abstract language
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understanding or using language socially
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unusual intonations, rhythms of speech, volume
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understanding gesture and facial expressions
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using language to have needs met
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use of pronouns (I/you confusion or he/she confusion)
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starting, continuing and/or stopping conversations (e.g. conversational turn-taking)
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the give and take, or interplay, of conversation (they may talk a lot and not listen much)
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being literal in comprehension
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unusual use of accents (often borrowed from television)
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repetition of words or phrases from other people
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repetition of words or phrases from television or everyday life (e.g. teachers).
Some of the things that go along with language are part of ‘communication’. Communication is not synonymous with language. Introduce a short exercise to demonstrate this.
Miming exercise Ask for some participants to volunteer to do a mime for the group (they are not allowed to use language). Give each volunteer a piece of paper with a phrase on it. These may be things like: ·
I am hungry
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I need to go to the toilet
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I want to play on the computer
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I want to go in the car.
Now ask them to take it in turns to do their mimes for the group, and see if those participants watching can guess what it is that they are trying to communicate. Ask the participants who volunteered to mime to discuss how they communicated these ideas. Explore the fact that children with autism may be much less likely to use and understand mime, gesture and body language in communication. What must this be like?
Children with autism spectrum conditions (ASCs) may also have difficulties with:
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understanding body language in communication
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using body language in communication
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using gesture in communication
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using eye contact in communication
LANGUAGE AND COMMUNICATION
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understanding the need to listen in a conversation
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knowing how to build a conversation with another person
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understanding what things like laughter or clapping mean in social situations.
Some of these difficulties have been mentioned before and are related to getting the gist and mindblindness. The important point to get across to participants is that they all hamper communication.
Children with Asperger Syndrome: taking things literally and idioms Distribute Handout 3.4 to participants, which presents a list of idioms. Ask them to tick each one that they have heard before. For those examples that they have not heard before, ask them to guess and write down what they think they might mean. Some examples of the use of idioms are: ·
Diana lit up the lives of many people
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Mary: ‘Would you like some more pudding, Granny?’ Granny: ‘No thanks, my back teeth are awash.’
Ask participants to volunteer some of their answers. Ask them how they knew these answers. How did they guess? Was this related to theory of mind, getting the gist, imagination? Ask them to give examples of times when their children may have taken things literally.
Break About 15 minutes. On reassembling, begin a discussion carrying on the theme from before, asking if anyone else has any other examples of literal thinking in their children.
Exercise in understanding difficulties with communication (using body language and eye contact) When this discussion has been going for a short while, ask the participants to turn their chairs outwards, keeping them in a circle. This should mean that they can no longer make eye contact with each other. Allow the discussion to carry on for about three to five minutes. Judge the time to let things get a little awkward but not too uncomfortable.
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After this, ask participants to relate how the experience made them feel. What is it like having a conversation when you can’t see anyone else? Record participants’ comments on the flip chart. When the discussion tails off, ask participants to face their chairs the right way round again and to continue the discussion about their feelings. Some of the things expressed might include: ·
feeling isolated
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not knowing when to speak
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being uncomfortable
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not being able to know when to talk
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being less likely to initiate a conversation
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feeling more easily distracted
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having a mind that wandered.
Write these up on the flip chart as they are offered. When this list has been generated, ask participants why they think they felt as they did. Another list may be generated that includes: ·
not being able to make eye contact
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not being able to see people’s body language
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not being able to see others’ facial expressions.
Point out to participants that, while this is simply an exercise, it is known that children with ASCs have problems understanding all these things (e.g. eye contact, body language and facial expressions). It may be that, because they can’t make use of this information effectively in social situations, they feel the same types of emotions identified by the group (e.g. isolated – refer back to the participants’ first list on the flip chart). Of course what the participants have experienced will not be exactly what it is like for children with autism or Asperger Syndrome, but it may give them some insights.
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Asperger Syndrome exercise: how do you know what to say next? Conversation building Split the participants into small groups and ask them to discuss what they find difficult about going to a party. Ask them in particular to think about communicating in social situations. Bring the discussion round to conversations. Ask the participants, in their groups, to consider the following questions (or some similar ones of your own). ·
At a party, when we are meeting old friends or people we haven’t seen for a while, how do we choose who to talk to and how do we know what to say to them?
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If you do talk to someone you don’t know, how do you decide what to ask them and what to talk about?
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What do you say after you have said ‘Hello’?
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How do you continue once you have started a conversation?
After five minutes’ discussion, reassemble the whole group and invite feedback. Most people recognize that it can be difficult to decide what to talk about when they see someone at a party, especially if they don’t know them very well. They might make decisions about who to approach first based on whether someone looks friendly or smiles at them. It might depend on the way in which someone makes eye contact, and they have to make judgements about the meaning of that eye contact. Some people may stand on the edge of a group of people hoping that they may be included in the discussion. Others may find someone else who is on their own to talk to. We choose who to talk to based on who we get on with and who gets on with us. We will tend to approach people we like and people who we know like us – for example, people with common interests or similar personalities. We will have an idea about different people’s attitudes and feelings towards certain things (e.g. feelings about school, the teachers, important issues, and so on). Choosing what to say is also hard. We tend to rack our brains for information about the other person’s family, or try to remember what their interests are. What hobbies do they have? We might start a conversation based on things we remember about them. We need to make judgements about what is socially appropriate in particular situations. In continuing a conversation we try to monitor ourselves and the other person’s responses. We want to make sure that we are not boring the other person by talking too much about our own interests and we look for signs of this (e.g. if they look away, don’t make eye contact, don’t make appropriate verbal or non-verbal responses). We might avoid certain people because we know they don’t like us. We also might know who gets on with who at the party. Some of the people we like might not like each other and so we may have to be careful what we say. This could make things more complicated.
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Make the point that we find such situations difficult as competent adults. How much more difficult must they be for children with autism spectrum conditions? We use lots of information about other people in communication with them. We know things about their feelings, attitudes, experiences and circumstances that we use in communication. We are careful to discuss the positive and steer away from things that we know are sensitive issues. Children with ASCs, who have mindblindness and problems getting the gist, struggle with all this. This means they make mistakes in communication in settings like this. Such situations understandably then make them very anxious.
Group discussion Ask the participants to consider ways in which problems with communication and language impact upon their children. List examples on the flip chart. Typical answers for children and young people with Asperger Syndrome might include: ·
not understanding what is said
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easily confused
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take words out of context
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change the subject to something they are interested in
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interrupt conversations
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not knowing when to stop talking
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talking about their own interests excessively
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no concern for the listener’s needs
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not knowing how to start a conversation
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making odd noises
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not understanding sarcasm
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making loud, embarrassing comments about others.
Typical answers for children and young people with autism might include:
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not understanding what is said
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not knowing how to communicate needs
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not understanding that they need to communicate in order to have some needs met
LANGUAGE AND COMMUNICATION
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seemingly ‘expecting’ their needs will be met (e.g. sitting at the kitchen table and simply waiting for food or drink to arrive)
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focus on a key word without understanding positive or negative (e.g. ‘we’re not going in the car now’ may be heard as ‘car now’)
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tantrums because they cannot communicate
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frustration because they do not understand what is expected of them or what they are doing wrong.
Ask participants to consider ways in which language and communication issues might impact on the learning of children with ASCs, or how they might affect how we give instructions to children (e.g. on how to behave). Some typical answers, which you can write up on the flip chart, might include: ·
complex language will not be understood
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abstract language may make things more difficult to understand
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simple language, used clearly, is more effective
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breaking tasks up may help
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giving the child time to process information will help
Sum these points up by confirming that simple, clear language is required in giving instructions to and communicating with children with ASCs.
Questions and answers Allow a few minutes at the end of the session for participants to put any questions they may have about problems with language and communication, or about topics discussed in the previous sessions.
Homework Distribute Handouts 3.1 and 3.5 to participants, explaining that the latter includes details of their homework: ·
Read Handout 3.1, ‘Session 3 summary: language and communication’, or, for more detail, read Chapters 8 and 11 in How to Live with Autism and Asperger Syndrome: Practical Strategies for Parents and Professionals, by Chris Williams and Barry Wright (Jessica Kingsley Publishers, London).
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Think of some examples for the next session to do with the ways in which language and communication difficulties affect your child.
Close the session.
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Handout 3.1
Handout 3.1 Session 3 summary: language and communication Communication Most infants are born with the built-in ability to develop communication. In children with autism this system often does not function well. This varies from person to person and may be shown in a number of ways: ·
some children fail to learn to speak or make gestures
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some learn words early but then stop talking, and future language development occurs at a slower rate
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some use words or gestures but not in a communicative way
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some use words or gestures only to have their needs met and not to chat or problem solve (e.g. ‘I want…’)
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some learn communication skills at a much slower rate
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the child or young person may have a problem, know what it is, be unable to sort it out for herself but be unable to communicate this; she becomes frustrated, loses her temper and does something that grabs an adult’s attention, which leads them to sort out the problem.
Not being able to understand what is said makes the world a very unpredictable place. It is not surprising, then, that the child or young person with autism or Asperger Syndrome may rely on routine and dislike disruption. When language and communication develop there are often subtle differences in their use. ·
Some people with autism are aware of their needs and how to get what they want. However, they may lack the understanding that other people can also help them, and so may not be able to sort out their own problems and remain uncomfortable or find ways of sorting out the problems in a way that is not acceptable to others (e.g. climbing onto a kitchen surface to reach the cereal).
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They may get the pronouns ‘I’ and ‘you’ mixed up (e.g. ‘You want a drink’ meaning ‘I want a drink’). Although this happens for most children, those with autism may struggle with this concept for a great deal longer.
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Conversations may be about factual information rather than related to thoughts, feelings and opinions.
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Handout 3.1 Session 3 summary: language and communication
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·
There may be some difficulty understanding what other people mean when they try to talk about their feelings.
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Language may be repetitive.
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The child might find less subtle ways of attracting the adult’s attention, such as moving the head of the person they are trying to talk to or using the adult’s hand as if it was a tool.
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They may borrow phrases they have heard elsewhere, such as from a video, TV programme, at school or from adults. These phrases are often used appropriately but have a slightly odd quality to them (e.g. ‘I’m hungry mother’, from 101 Dalmatians, or ‘They think it’s all over. It is now!’ or ‘Oh no! It’s hit the bar’ from football commentaries).
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The child may ask a lot of questions.
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Building on conversation that doesn’t centre around the child’s topic of interest may be difficult.
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The child may take many things literally. For example, when out walking the dog and being asked to ‘Go up and down’, the child might literally jump up and down herself. Similarly she may be very distressed when hearing the phrase ‘crying your eyes out’ thinking that her eyes might literally fall out.
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The child may misread what is said (e.g. ‘We’re not going to the park’ as ‘We’re going to the park’).
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Slow processing speed is likely to make the child or young person feel uncomfortable and want to stop the interaction.
Copyright © Barry Wright and Chris Williams 2007
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Handout 3.2
Handout 3.2 Twins 1.
Which twin has an ASC?
2.
Which descriptions are to do with mindblindness or theory of mind (TOM)?
3.
Which relate to (not) getting the gist?
1. Ben: The car stops. There is a screeching noise. That must be the brakes. They are noisy. Tony: The car stops. There is a screeching noise. It is noisy. It is not nice. 2. Ben: My mum gets out of the car. There is a smell of smoke. That comes from the back of the car. I think my dad calls it the exhaust. Tony: My mum gets out of the car. There is a smell of smoke. There are stones on the floor. I pick one up. It feels hard and gritty. There is a stripy fence. One, two, three, four… I like the patterns I see when I walk by. I hear screeching noises. I put my hands on my ears. I don’t like it. I see a puddle. Splash, splash, splash. Nice noise. Mum says, ‘No, Tony.’ 3. Ben: I see balloons hanging on the side of the house. A mix of different colours of balloons. Hey, I wonder if there is something fun going on here? Tony: I see a window and a door. I see balloons hanging on the side of the wall. A mix of different colours of balloons. Blue and red and green and pink balloons. There are 11: two blue, two red, two green and five pink. I’ll count that again. Two blue, two red, two green… 4. Ben: Mum takes my hand. That makes me feel safe because I might be meeting some new people and that might be scary. Tony: Mum takes my hand. It feels rough. We walk towards the wall. I want to count the balloons again. 5. Ben: We walk towards the house. I hear some shouting. It is children’s voices. There is also some music playing. It sounds like nursery rhymes. Hey, this must be a place for kids. That’s good. This is exciting. I wonder what will happen next. I’ll hold on to my mum’s hand for a while. She will make sure I’m OK.
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Handout 3.2 Twins
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Tony: We walk towards the wall. I hear lots of different noises. I don’t like this at all. What is this? I don’t know this. This is scary. I don’t like my hand in that hand. I need to go now. 6. Ben: We get to the door. My mum presses a button. That must be the bell. I didn’t hear anything ring, but a lady is opening the door. She is smiling and she says ‘Hello’ to my mum, and then ‘Hello’ to me. She looks happy and kind. I like her. She offers me her hand. She has a nice perfume. I look at my mum. Is it OK to go with her? My mum smiles and nods. She looks relaxed and happy for me to go. I let go of my mum’s hand and take the lady’s hand. Tony: We get to the door. Mum presses a button. A big gold button. It shines a lot. The door is opening. A grown-up is there. I hear ‘Hello’ twice. The lady’s hand comes towards me. What is it for? I don’t want it. The hand takes my hand. It is warm. There is a very strong sweet smell. This is scary. I know that hand but not this new one. 7. Ben: ‘Shall I take him to meet the others, Barbara?’ she says to my mum. My mum smiles again. ‘Thank you, Joanne.’ My mum knows this lady and they seem to like each other. I wonder who she is. Maybe she is the mum of one of my friends. Tony: I hear some sounds and the word ‘meat’. I don’t like meat. This is all strange. I don’t like it at all. 8. Ben: She leads me towards a door. I hear more noise. I hear a voice I have heard before. It sounds like my friend. The door opens. There are lots of colours in this room. There are toys on the table. I see a cake on the table and it has candles on it, and there are lots of presents wrapped up in coloured paper. Hey, this must be a party. Tony: I hear more noise. I hear a voice I have heard before. The door opens. There are lots of colours in the room. The wallpaper is yellow with blue stripes. One, two, three, four, five, six, seven… The hand pulls me into the room. There is a TV. I see videos on the shelf. I see a ‘Thomas the Tank Engine’ video. I see a yellow car. The wheels spin round and round. I like that. There is paper on the floor and books and coloured things on the table. I see a cake on the table and it has candles on it. Five. Four are blue and one is red. 9. Ben: ‘Hi, Ben,’ says my friend, Alistair. That reminds me who that lady is. It is Alistair’s mum. He is nice, so she might be too. This must be his house and it must be his party. Copyright © Barry Wright and Chris Williams 2007
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Handout 3.2 Twins
Tony: ‘Hi, Tony,’ I hear. I know this. I see him during the day sometimes. He takes my trains from me. 10. Ben: There is lots of smoke coming from those candles. I hope the wax doesn’t get on that nice cake. It looks yummy. I wonder when I get to eat some. I suppose I’ll have to wait until Alistair blows out the candles. Tony: There is lots of smoke coming from those candles. It swirls in the air in spinning, spinning patterns. That is nice. I like that. I will watch that. The cake looks yummy. I shall eat some now. It feels soft and sticky. ‘No, Tony.’ I put my hands on my ears. 11. Ben: Alistair likes to play and he likes me. ‘Hey Alistair, let’s go and play!’ Tony: ‘Aa Aa Aaaa Aa!!’
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Handout 3.3
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Handout 3.3 Twins analysis sheet Tony is the twin who has an ASC. Some of the types of difficulties children experience are related to mindblindness (M) and not getting the gist (G). 1. G Tony focuses in on the sensory experiences (the noise of the car). Ben works out from the context that the screeching sound is to do with the brakes. 2. G Tony focuses in on the sensory experiences (the smell of the smoke, the feel of the stones, the pattern of the stripy fence). Ben works out from the context that the smell is to do with the exhaust. M Ben remembers what his dad has said in the past: ‘I think my dad calls it an exhaust.’ He is possibly thinking, ‘That’s what my dad would think or say.’ He is able to think about what his dad thinks. Ben is showing he can use TOM. 3. G Tony sees windows, walls, doors and balloons. He sees things in parts. Ben recognizes that this is a house. He is able to put all the parts together to see them as a whole. Ben also recognizes that the balloons mean that there is a ‘fun’ situation here. He is making a good guess about what might be happening, whereas Tony is mostly interested in focusing on counting the balloons he sees. 4. G Tony focuses on the sensory experience of his mother’s rough hand. Ben takes comfort in holding his mum’s hand. He knows that this situation is out of the ordinary and might be scary. 5. G Tony is focusing on the noise. He has not been able to bring together all the clues about the situation to make a guess that it might be fun. Ben hears music and adds this information to all the other clues he has that this could be exciting. M Ben hears children’s voices; he is able to make some guesses about how they might be feeling by the excited tone of their voices. To Tony this is more unpredictable noise. 6. G Ben can work out from the context that the button his mum presses is the door bell. Even though he doesn’t hear anything, he knows what this situation means. Tony concentrates on the shiny button and then suddenly sees a grown-up and a hand. He also focuses on the smell. M Ben seems reassured by the lady’s smile and kind voice. He is able to guess from her facial expression that she is happy. He also knows from his mother’s facial expression what she thinks about the lady. His mum’s smiles Copyright © Barry Wright and Chris Williams 2007
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Handout 3.3 Twins analysis sheet
and nods mean that this is a safe person and that it’s OK to go with her. He is displaying TOM; he is not mindblind. Tony is unaware of his mum’s facial expression and concentrates only on the scary new hand. 7. G Tony focuses on the word ‘meat’. He does not use the word in the context of the sentence. M Ben knows from his mother’s expression that she knows and likes the lady. He can also guess who she might be. 8. G Tony sees individual objects: TV, video, stripes, the wheels of a car, paper, cake and candles. Ben sees the whole picture; he quickly puts together all the aspects of this situation and realizes that it’s a party. 9. M Ben recognizes Alistair as his friend. He talks about his personality and knows that he is a nice person. He is also able to think about what sort of a person Alistair’s mum might be. Tony knows what Alistair does (‘he takes my trains’); he does not think about his personality. 10. G Ben knows intuitively that this is a birthday cake and that the social rules in this context say that everyone has to wait for Alistair to blow out the candles before they can eat the cake. Tony isn’t aware of these social rules. Instead he focuses on the sensory experiences of the smoke and the feel of the cake. M Tony is not able to consider what Alistair’s mum might think if he plays with the icing on the birthday cake. So he cannot predict the outcome and is upset by Alistair’s mum shouting. 11. M Ben is able to understand what Alistair might be thinking or feeling. He knows he likes to play and he knows Alistair likes him. This is all very confusing for Tony, who prefers to be left alone.
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Handout 3.4
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Handout 3.4 Idioms Call it a day Do you want to change your mind? Cut it out now Write on every other line Get your head down and get on with it Get going, step on it Do you get it? It’s a piece of cake He will be here before long Turn it upside down/inside out What do you need me for? You don’t say Are your wires crossed? The noise is getting out of hand Give him a hand/Do you need a hand? Make up your mind I’m pulling your leg Question 3 is a tough one Take your seats
Copyright © Barry Wright and Chris Williams 2007
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Handout 3.5
Handout 3.5 Homework (Session 3) ·
Read Handout 3.1, ‘Session 3 summary: language and communication’, or, for more detail, read Chapters 8 and 11 in How to Live with Autism and Asperger Syndrome: Practical Strategies for Parents and Professionals, by Chris Williams and Barry Wright (Jessica Kingsley Publishers, London).
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Think of some examples for the next session to do with the ways in which language and communication difficulties affect your child.
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SESSION 4
Preoccupations, Sensory Interests and Repetitive Behaviours
Learning outcomes At the end of this session the participants will be able to: ·
describe the difference between a hobby, a preoccupation and an obsession
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identify five areas of preoccupation
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outline the potential impact of problems with mindblindness and getting the gist in terms of a tendency to develop preoccupations.
Session aims ·
To recap on the theme of language and communication
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To introduce the themes of preoccupations, sensory interests/sensitivities and routine
Number of facilitators/therapists needed for this session ·
Two to three
Materials and handouts required for Session 4 Training materials required ·
Paper and pens
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Books on autism and Asperger Syndrome
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Flip chart
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Toys (e.g. plasticine, playing cards, board games such as snakes and ladders, draughts, a box of dinosaurs)
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Six sets of cards (each comprising five cards) with one of the following headings on each – Mindblindness, Anxiety, Getting the gist, Imagination, Communication (see Handout 4.3)
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Strong sweets, bubbles, radio or tape recorder, noisy toys like drums, feathers, air freshener, fans
Handouts ·
Handout 4.1 Session 4 summary: preoccupations, sensory interests and repetitive behaviours
·
Handout 4.2 Exercise: sensory preoccupation
·
Handout 4.3 Cards to photocopy and cut out for use in the exercise on understanding preoccupations (you will need only one copy of this as it is for use by the facilitator rather than the participants)
·
Handout 4.4 Homework (Session 4)
Suggested facilitator revision ·
You should have a sound understanding of the topic area before running the session; for example, read Chapters 6, 17 and 18 of How to Live with Autism and Asperger Syndrome: Practical Strategies for Parents and Professionals, by Chris Williams and Barry Wright (Jessica Kingsley Publishers, London); further recommended reading is listed below.
Attwood, T. (1993) Why Does Chris Do That? Some Suggestions Regarding the Cause and Management of the Unusual Behaviour of Children and Adults with Autism and Asperger Syndrome. London: National Autistic Society. Williams, D. (1998) Nobody Nowhere. London: Jessica Kingsley Publishers, first published 1992. Williams, D. (1998) Somebody Somewhere. London: Jessica Kingsley Publishers, first published 1994.
Recap
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·
If any participants have missed any of the previous sessions, it will be necessary for a member of the team to bring them up to speed on the topics covered so far. This could be done between sessions, or immediately before or at the end of this session.
·
Give participants a brief reminder of the subject of the previous session: the difficulties associated with language and communication.
PREOCCUPATIONS, SENSORY INTERESTS AND REPETITIVE BEHAVIOURS
·
Lead a discussion about language and communication skills, referring to the relevant chapters of Williams and Wright or Handout 3.1.
·
Ask the participants if they have been able to come up with any examples of the ways in which language and communication difficulties affect their children.
Introducing the theme: preoccupations, sensory interests and repetitive behaviours Introduce the concept of preoccupations. Tell participants that you will be giving them a handout (Handout 4.1) at the end of the session, which summarizes the topics covered in this session. Explain that preoccupations are things that an individual thinks about a great deal. They may take up a lot of time in terms of thoughts or actions – certainly more time than they take up for the average person. Many people have hobbies and interests, and sometimes the dividing line between a hobby and a preoccupation can be a fine one, but most people with hobbies and interests are happy to engage in a range of other activities too, and can take or leave their hobbies depending on when they have time available. Strictly speaking, most preoccupations are not obsessions: people often try to resist obsessions, and feel trapped by the fact that they have to deal with them; while preoccupations are usually things that the person involved enjoys. Preoccupations can occur in children with autism spectrum conditions (ASCs) in five main ways. Lead a discussion about each of these in turn.
Healthy preoccupations of great intensity Preoccupations can revolve around typical interests but be extremely intense. Ask the participants if they can think of anything their child is interested in that is a healthy interest but very intensely held. Note any responses on the flip chart. These might include: ·
Thomas the Tank Engine
·
Thunderbirds
·
Teletubbies
·
Disney films
·
Toy Story
·
cars
·
trains
·
collecting things
·
Pokémon cards (but rarely play)
·
PlayStation
·
TV programmes
·
animals
·
dinosaurs
·
Wallace & Gromit.
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Explain that some of these things have been designed to be of interest to children so it is not surprising that they are much loved by them. For this reason, just because a child likes videos of Thomas the Tank Engine, this does not mean that he or she has autism. However, what makes the preoccupations of a child with autism different from most children’s preoccupations is their intensity. How do we know if something is very intense? Some signs that a child holds a preoccupation very intensely are that they: ·
insist on repeatedly engaging in activities with high frequency and intensity (for example, watching the same piece of a video 20 times per day)
·
will not change to other healthy activities without excessive distress
·
insist on holding certain objects related to the preoccupation all the time (e.g. walking around with a Thomas the Tank Engine model in each hand) and sleep with them; they may become very distressed if they cannot do this; it is of course healthy for children to develop an affection for a toy (often a cuddly toy) that they are very fond of and take to bed with them
·
play with objects related to the preoccupation in a very different way to more typical play (e.g. in the case of Pokémon cards there is a great fascination with the detail on the cards rather than wanting to share their play with them with other children).
Unusual preoccupations The second type of preoccupation is an unusual preoccupation (what some people call a stereotyped interest). This is something that children of that age would not normally be preoccupied with. Ask participants if they can think of anything like this that their child is preoccupied with. Note any responses on the flip chart. These are likely to be wideranging and varied, such as:
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·
Blu-tack™
·
stones
·
bottle tops
·
hairdryers
·
fluff
·
traffic signs
·
traffic lights
·
logos
·
film credits
·
batteries
·
paper clips
·
plastic
PREOCCUPATIONS, SENSORY INTERESTS AND REPETITIVE BEHAVIOURS
·
certain colours
·
pylons
·
water hydrants
·
spray cans
·
car washes
·
door-opening mechanisms
·
almost anything else, but usually with an interesting pattern or mechanism.
Sensory preoccupation Introduce the following brief exercise, which is designed to show how difficult it can be to stay on task and attend when surrounded by a lot of different types of sensory information. While we may be good at blocking out sensory information around us when we need to, many children with ASCs find this difficult. Ask participants to get into pairs and label themselves A and B. Distribute copies of Handout 4.2 to all the As.
Exercise: sensory preoccupation Instructions 1.
A should read aloud these instructions and the passage below to B.
2.
B is not allowed to see the text.
3.
A should then ask B four questions about the passage.
Passage The Eiffel Tower is a large structure built in Paris. Gustave Eiffel was an engineer who owned a metalworks company. This company constructed the Eiffel Tower. Work began on the pillars in the summer of 1887 and when finished it was originally 312 metres tall. The metal framework weighs 7300 tons, but its total weight is 10,000 tons. The wind can make the tower sway by up to 7 cm. With the antenna now on top it is 324 metres high. On 31 March 1889 it was completed and Gustave Eiffel received the Legion of Honour medal at the top of the tower. It has been used as a radio mast, as a research resource, for exhibitions and as an attraction in its own right for millions of people. The tower is visited mostly by French people, followed by the Spanish, Americans and then the British. In its life more than 200 million people have visited, and 6 million currently visit each year. It currently costs 11 euros for adults and 6 euros for children to go to the top, although it is cheaper to go to lower sites. There is an elevator to take you to the top. The public cannot get to the top by stairs but it is possible to use stairs to get to the lower levels, and many people do this for fun or because it is cheaper than going up by lift.
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There are restaurants on the two main levels. One, on the first floor, is called Altitude 95 because it is 95 metres above sea level. The other, on level two, is called Le Jules Verne. Professional tour guides are also available. The tower has been repainted 17 times since it was built. This means it is painted on average every seven years. It is painted with special paint in several different layers. The tower’s illuminations are spectacular and have been revised many times over the years. Today 500 employees run the Eiffel Tower and the operating company is 60 per cent owned by the people of Paris.
Questions 1.
What date was the building of the Eiffel Tower finished?
2.
What does the metal framework weigh?
3.
What medal did Gustave Eiffel receive when the tower was completed?
4.
What is the name of the restaurant on level two?
Distracting the participants While participants follow the written instructions on Handout 4.2, you should try to put them off with sensory distractions like those suggested below: ·
give out strong-tasting sweets
·
blow bubbles with a bubble gun
·
turn the lights on and off
·
play a tape of environmental noise
·
tickle them with a feather
·
blast them with cold air from an electric fan
·
spray air freshener.
The third type of preoccupation is a sensory preoccupation. This can happen in any sensory modality. Write these up on the flip chart, with a space under each so that participants’ comments can be added:
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·
smell
·
touch and texture
·
taste
·
vision
·
vibration
·
temperature
·
sound
·
movement.
PREOCCUPATIONS, SENSORY INTERESTS AND REPETITIVE BEHAVIOURS
Ask participants to suggest things that their child is interested in and note these on the flip chart under the appropriate heading. Some examples might include: ·
Smell – food, people, air fresheners
·
Touch – hair, sand, water, feeling corners of fabric, stroking different fabrics, surfaces, labels
·
Taste – food, texture, metal objects
·
Vision – disco lights, flashing lights, moving text, hands, fences, bars
·
Vibration – washing machine, vibrating toys
·
Sound – chimes, roadworks, laughter, water
·
Movement – pouring things, chimes, marble runs, washing machine, string, things that spin.
As you are discussing sensory preoccupations, introduce the concept of sensitivity. Children on the autism spectrum seem to be keenly aware of their senses. They have more difficulty screening out noises that are ever present but that most of us don’t notice (e.g. clanking water pipes in the night, car traffic outside the house, perfumes of family members, background noise in a supermarket or restaurant). Many of us will not even notice these things when we have been around them for a while: our brains choose to ignore them. They do this without any conscious effort on our part, but children with autism seem to have great difficulty with this. They also have more difficulty understanding the social meaning of some noises (e.g. background laughter in a restaurant) and are more tuned into sensory changes (e.g. a change in the smell or taste of something). Sometimes we see phobic responses, where children hate certain things and try to avoid them because of such sensory sensitivity. SENSORY FEARS
Ask participants to give examples of fears or phobias that their children might have that fit this description. Write their ideas on the flip chart. Examples might include: ·
glitter
·
clapping
·
laughter
·
balloons
·
loud noises
·
certain colours
·
dogs
·
medication
·
germs
·
food (packaging, taste, smell)
·
noise (e.g. screeching)
·
grass cutters
·
hand driers.
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Encourage the group to consider and discuss why our children on the autism spectrum might be frightened by such things. Explore the concepts of mindblindness (e.g. not understanding the social meaning of laughter) and getting the gist (what is clapping for?) introduced in previous sessions.
Preoccupation of routine The fourth type of preoccupation to be considered is the preoccupation of routine (a ritual, habit or liking for sameness, or a compulsion to do certain things). Ask participants for examples of what their children do that fit this category. Note their responses on the flip chart. Examples might include: ·
always going the same way to the shops
·
going to the same shops every time they go to town
·
doing fixed routines in the morning
·
walking a certain way around things
·
touching certain things in a certain order
·
sticking to the clock
·
wearing certain clothes regardless of the weather
·
wanting certain-shaped sandwiches
·
sorting things into piles
·
always ordering the same food in the same restaurant
·
always eating from the same plate.
There are many more such examples that might be suggested by the participants. Lead a discussion about how problems with the following areas might increase the likelihood of such preoccupations occurring in children with ASCs: ·
theory of mind (TOM)
·
getting the gist
·
anxiety
·
social skills
·
communication
·
imagination.
Mannerisms or odd movements (stereotypies) Finally, introduce the concept of other repetitive behaviours, such as mannerisms or odd movements (stereotypies). These are not, strictly speaking, preoccupations, but they are things that children do repeatedly in their lives; movements that have no practical function as opposed to mannerisms that are odd movements in the course of doing something and hence have a function. Hand flapping might be one example. 98
PREOCCUPATIONS, SENSORY INTERESTS AND REPETITIVE BEHAVIOURS
Ask participants to offer examples and list these on the flip chart. Examples given might include: ·
body rocking
·
hand wringing
·
hand flapping
·
head banging
·
spinning on the spot
·
running up and down between two points.
Ask the participants to consider what comfort these behaviours may give children on the autism spectrum. They may have noticed that some preoccupations, sensory interests or movements may happen when the child is under stress. Ask participants what these behaviours might offer the child in such situations. They may suggest pleasure, comfort, calm and shutting out other things as possible explanations.
Break About 15 minutes. On reassembling, tell participants that they are now going to tackle an exercise in understanding preoccupations.
Exercise in understanding preoccupations You will need a selection of games and toys for this exercise, e.g. plasticine, playing cards, board games such as snakes and ladders, draughts, a box of dinosaurs. You will also need to make six sets of cards (each comprising five cards) with one word on each card (see Handout 4.3). The words on the cards in each set are: ·
Mindblindness
·
Anxiety
·
Getting the gist
·
Imagination
·
Communication
The purpose of this exercise is to enable the participants to better understand the potential impact of difficulties associated with ASCs. 1. Ask the participants to work in pairs. 2. Ask each pair to play with a particular game/toy, in any way they would like. 3. After three or four minutes ask them to stop. 4. Ask each of the pairs in turn what they are doing.
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5. Then give each pair of participants two or three of the pre-prepared cards (Mindblindness, Anxiety, Getting the gist, Imagination, Communication). 6. Ask the participants if they will be able to continue with their proposed activity now that they have these difficulties. If not, why not? Encourage them to consider what impact each difficulty might have on their thinking and whether these problems would alter or affect a child on the autism spectrum in terms of being able to play appropriately with the toy or game. 7. If they are able to continue the game with those particular difficulties, ask them to do so. If not, ask them to play with the toys/game in a way that these particular difficulties – as stated on the cards – would allow. 8. Ask each pair of participants in turn the same questions. 9. When each pair has had the chance to feed back about their first games, encourage them all to play again as if they had the difficulties on the cards you have given them. 10. Allow brief feedback after a few minutes about the new, with-difficulties games.
Examples to accompany the exercise in understanding preoccupations If the participants want to play the game of poker as a possible activity, you could give them the cards Mindblindness, Getting the gist and Anxiety. The participants can then be asked if they would be able to continue this game if they had difficulty with such things. The answer could be that problems socializing, mindblindness (being able to understand someone else’s role in the game), getting the gist (understanding the rules) and anxiety might prevent this happening. They would probably have difficulty bluffing and duping; so they cannot do this and must just carry on lining the cards up. If, when considering Asperger Syndrome, the participants start a game of imaginative play with the toy dinosaurs, you could give them the Imagination card and then ask if they can continue in their play in the same way with this difficulty. The answer would be that children with Asperger Syndrome might not have the imaginative desire or skill to participate in such an activity. They keep the Imagination card and try to think of a way that a person without imagination might play with the dinosaurs. If they choose a game such as building a house with Lego, you could give them the Imagination and Communication cards. The participants can be asked if they could continue the game if they had difficulty with these things. You can encourage them to speculate as to whether they could build the house if they had no imagination. If a participant chooses to make patterns with the playing cards, you may give them the Mindblindness card and the Anxiety card. When asked if they could 100
PREOCCUPATIONS, SENSORY INTERESTS AND REPETITIVE BEHAVIOURS
continue the activity if they had these difficulties the answer will probably be ‘Yes’. The participant is then allowed to continue with that activity. What should happen is that each participant will end up doing an activity that is something that their child with autism or Asperger Syndrome might do. They do not do other types of activity as each participant will have in their hands a series of cards with reasons for this (e.g. Mindblindness). The purpose of this exercise is to facilitate discussion. Reinforce the fact that every child is different and so not every answer fits every child. There will also be different degrees of these problems in every child. Don’t forget to mention the positives of the children’s play too.
Group discussion The exercise facilitates discussion about reasons for preoccupations. Make the point that we don’t ever really know what causes preoccupations, but that thinking about possible reasons may help us better understand the experience and behaviour of a child with an ASC. Using this exercise, we can see that many simple games are not possible for young people with an ASC. Instead they may revert to more comforting activities where they do not rely on theory of mind, getting the gist, communication skills, and so on. They might prefer solitary play, and games where there are clear rules and a strong sense of logic. Explain to the group that future sessions will explore behaviour management. Ask the participants to suggest preoccupations that are helpful to children and to say why, and then to suggest those that are not helpful and why. Write their answers on the flip chart. Some helpful reasons might be that they: ·
reduce anxiety
·
give children time out so they can calm down and re-engage (e.g. educationally) later
·
may be educational (e.g. an interest in archaeology)
·
give children a break from anxiety-provoking social interactions
·
are enjoyable
·
allow parent and child to do something together.
Some unhelpful reasons might be that they may: ·
lead to isolation when they go on for too long
·
be socially unacceptable (e.g. stroking fabric or a stranger’s clothing)
·
be dangerous (e.g. following white lines on the road)
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·
be acceptable now but will not be in the future (e.g. kissing all the people they meet)
·
get in the way of education (e.g. insisting on drawing the same picture over and over, constantly walking round the walls of the classroom)
·
make it very difficult to get out of the house or perform typical daily living activities (e.g. long routines or rituals in the house).
This discussion will help the participants to think about things they might try to address in parenting or behaviour management and what is not worth pursuing.
Questions and answers Allow a few minutes at the end of the session for participants to put any questions they have about problems with preoccupations, sensory interests and repetitive behaviours or about topics discussed in the previous sessions.
Reminder to facilitators Although you will not be running Session 7 for a few weeks, this is a brief reminder that, prior to that session: ·
you will need to recruit additional therapists (one for each child represented)
·
you will need to try to match individual therapists to each child represented in the group in advance of the session
·
you might like to invite them to sit in on Session 6, so that they are fully briefed as to what will be required of them
·
ask the therapists to prepare by reading Chapter 9 of Williams and Wright
·
tell them that they are also welcome to join Session 6 as preparation
·
provide therapists with the following materials in advance:
blank behaviour management template (see Handout 6.4 in Session 6) blank FIRE wheel (see Handout 6.2 in Session 6).
Homework Distribute Handouts 4.1 and 4.4 to participants, explaining that the latter includes details of their homework: ·
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Read Handout 4.1, ‘Session 4 summary: preoccupation, sensory interests and repetitive behaviours’, or, for more detail, read Chapters 6, 17, 18 in How to Live with Autism and Asperger Syndrome: Practical Strategies for Parents
PREOCCUPATIONS, SENSORY INTERESTS AND REPETITIVE BEHAVIOURS
and Professionals, by Chris Williams and Barry Wright (Jessica Kingsley Publishers, London). ·
Think about your child’s preoccupations and identify any possible reasons for them participating in the preoccupations when they do; think about which of the difficulties explored in previous sessions (e.g. mindblindness) might be preventing him or her from playing or learning appropriately.
Close the session.
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Handout 4.1
Handout 4.1 Session 4 summary: preoccupations, sensory interests and repetitive behaviours Sensory interests Children with autism seem to have a fascination for sensory experiences. Some children with autism have very acute senses of hearing, smell, touch, taste, sight or sensation. This can result in many different reactions, from fascination to distress. Visual sensory experiences enjoyed could be a love of visual patterns or an interest in spinning or swirling objects,or the way things move.The child may be interested in smell or taste,and want to smell or taste things.They may like certain feelings or textures, so they may like to touch faces or stroke textiles. Vibration may interest them, so they might hold their hands on vibrating pipes, cars or whirling machines. They may be fascinated by sand or water and their movement. Because they don’t have overall meaning, such interests may affect their play: for example, if they pick up a car they may wish to spin the wheels or line it up with other cars rather than playing with the car by pushing it along.
Sounds Although many parents of children with autism have at times questioned whether their child has a hearing impairment, they are also very much aware that loud or unexpected noises can be a great source of discomfort for the child. Noisy lorries, lawn mowers, aircraft, alarm bells and shouting often result in the child crying and putting his hands over his ears and/or becoming very frightened. On the other hand, children with autism often really enjoy certain sounds. For example: ·
shoes on hard floors
·
echoes
·
clapping
·
running water
·
music.
Smells Some children with autism can become distressed by smells that other people might find pleasant – perfumes, for example. Others like to smell their food before eating it or their clothes before wearing them.Some like to smell people (especially their feet) and appear to find this very comforting. 104
Copyright © Barry Wright and Chris Williams 2007
Handout 4.1 preoccupations, sensory interests and repetitive behaviours
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Touch Many children with autism refuse to wear various clothes made from different types of materials. Some complain that wool is too scratchy. Others don’t like clothes with zip fastenings or high necks. Many derive a great deal of pleasure from playing in water or feeling rough surfaces such as sandpaper or stubble.
Taste It is common for children with autism to be very faddy about foods. They are sometimes very specific about the make of beef burger or fish finger they would like to eat, being able to detect any slight variation between Tesco and Sainsbury’s brands, for example.
Sight Many children with autism appear to like looking at the symmetrical patterns they see in the environment. These might include the pattern created by walking past a wooden slatted fence, the smoke from candles or lines of any object.
Sensation Some children with autism really enjoy the sensation of being close to a vibrating object such as a washing machine or vacuum cleaner.
Movement Movement often holds a particular fascination for children with autism.They might like the feel of a balancing chair or dangling something heavy.
Unusual preoccupations A child with an ASC may be preoccupied with things that are unusual but not as simple as a sensory preoccupation. The following are some examples: ·
Blu-tack™
·
bottle tops
·
traffic signs
·
traffic lights
·
logos
·
film credits
·
pylons
·
water hydrants
·
car washes
·
spray cans
·
door-opening mechanisms
·
engineering projects.
Copyright © Barry Wright and Chris Williams 2007
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Handout 4.1 preoccupations, sensory interests and repetitive behaviours
Preoccupations or hobbies of unusual intensity Many children with autism have a favourite activity, interest or hobby. The child might talk at length about trains, animals, football facts, historical facts, time zones and such like.He may spend hours reading about or asking questions related to his favourite topic. Often he will become very upset if he is asked to stop play centred on the topic in order to go to school or out shopping, for example. Due to difficulties in interpreting the thoughts and feelings of others he may fail to appreciate that they do not share the same degree of interest or that they are tired of listening to him. Some reasons for this behaviour might be that it is fun and pleasurable, and may be a way of avoiding the less pleasurable (to the child with autism) activity of social interaction. The child is more likely to engage in these activities when he is left alone or in unstructured times, hence providing alternative activities and more of a structure might help. As the activity provides a great source of pleasure to the child it is very important to allow time for it, perhaps helping him to share his interest with others. However, he may need help with boundaries so that the activity doesn’t become too intrusive on others or prevent him from doing other things.
Preoccupations of routine Rituals These are often comforting in themselves but also serve the function of making the world a safer and more predictable place for the child with autism. Rituals usually occur more often when the child is feeling anxious or worried. However, they can take up very long periods of time and intrude considerably on daily life. In order to help the child it is important to try to make her day as predictable as possible in order to reduce anxiety. Putting some boundaries around the rituals may also help (e.g. restricting the number of times a ritual is performed).
Compulsions These are behaviours that people feel that they must do.They fear that,if they don’t do them,something dreadful might happen.Although they provide the person with a sense of control and reduce discomfort in the short term, the uncomfortable feelings soon return and the person feels she has to repeat the action and that she is unable to stop herself from doing so. Such behaviours might be associated with other factors, such as low self-esteem or well-being, anxiety about forthcoming or past events, or a feeling of lack of control. It is important for other people to recognize how difficult it is for the person to stop these behaviours, and to support them in appropriate ways. 106
Copyright © Barry Wright and Chris Williams 2007
Handout 4.2
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Handout 4.2 Exercise: sensory preoccupation Instructions 1.
A should read aloud these instructions and the passage below to B.
2.
B is not allowed to see the text.
3.
A should then ask B four questions about the passage.
The Eiffel Tower is a large structure built in Paris. Gustave Eiffel was an engineer who owned a metalworks company. This company constructed the Eiffel Tower. Work began on the pillars in the summer of 1887 and when finished it was originally 312 metres tall.The metal framework weighs 7300 tons,but its total weight is 10,000 tons. The wind can make the tower sway by up to 7 cm. With the antenna now on top it is 324 metres high.On 31 March 1889 it was completed and Gustave Eiffel received the Legion of Honour medal at the top of the tower.It has been used as a radio mast, as a research resource, for exhibitions and as an attraction in its own right for millions of people. The tower is visited mostly by French people, followed by the Spanish, Americans and then the British. In its life more than 200 million people have visited, and 6 million currently visit each year. It currently costs 11 euros for adults and 6 euros for children to go to the top, although it is cheaper to go to lower sites. There is an elevator to take you to the top. The public cannot get to the top by stairs but it is possible to use stairs to get to the lower levels, and many people do this for fun or because it is cheaper than going up by lift. There are restaurants on the two main levels. One, on the first floor, is called Altitude 95 because it is 95 metres above sea level. The other, on level two, is called Le Jules Verne.Professional tour guides are also available.The tower has been repainted 17 times since it was built. This means it is painted on average every seven years. It is painted with special paint in several different layers. The tower’s illuminations are spectacular and have been revised many times over the years. Today 500 employees run the Eiffel Tower and the operating company is 60 per cent owned by the people of Paris.
Questions 1.
What date was the building of the Eiffel Tower finished?
2.
What does the metal framework weigh?
3.
What medal did Gustave Eiffel receive when the tower was completed?
4.
What is the name of the restaurant on level two?
Copyright © Barry Wright and Chris Williams 2007
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Handout 4.3
Handout 4.3 Cards to photocopy and cut out for use in the exercise on understanding preoccupations " Mindblindness
Anxiety
Getting the gist
Imagination
Communication
Mindblindness
Anxiety
Getting the gist
Imagination
Communication
Mindblindness
Anxiety
Getting the gist
Imagination
Communication
Mindblindness
Anxiety
Getting the gist
Imagination
Communication
Mindblindness
Anxiety
Getting the gist
Imagination
Communication
Mindblindness
Anxiety
Getting the gist
Imagination
Communication
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Copyright © Barry Wright and Chris Williams 2007
Handout 4.4
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Handout 4.4 Homework (Session 4) ·
Read Handout 4.1, ‘Session 4 summary: preoccupations, sensory interests and repetitive behaviours’, or, for more detail, read Chapters 6, 17 and 18 in How to Live with Autism and Asperger Syndrome: Practical Strategies for Parents and Professionals, by Chris Williams and Barry Wright (Jessica Kingsley Publishers, London).
·
Think about your child’s preoccupations and identify any possible reasons for them participating in the preoccupations when they do; think about which of the difficulties explored in previous sessions (e.g. mindblindness) might be preventing him or her from playing or learning appropriately.
Copyright © Barry Wright and Chris Williams 2007
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SESSION 5
Imagination, Time Perception, Planning and Memory
Learning outcomes At the end of this session the participants will be able to: ·
describe the typical development of imagination
·
identify how a limited imagination can impact on time planning
·
outline the potential impact of limited imagination skills on everyday living for children with an autism spectrum condition.
Session aims ·
To recap on the themes of preoccupations, sensory interests and repetitive behaviours
·
To introduce the themes of imagination, time perception, planning and memory
Number of facilitators/therapists needed for this session ·
Two to three
Materials and handouts required for Session 5 Training materials required ·
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Paper and coloured pens (including large sheets of paper for the group exercise)
IMAGINATION, TIME PERCEPTION, PLANNING AND MEMORY
·
Labels for any new participants to have a first-name badge
·
Books on autism and Asperger Syndrome
·
Flip chart
Handouts ·
Handout 5.1 Session 5 summary: imagination, time perception, planning and memory
·
Handout 5.2 Rules for group 1 for use in exercise
·
Handout 5.3 Rules for group 2 for use in exercise
·
Handout 5.4 Homework (Session 5)
OHPs ·
OHP 5.1 The development of imagination
·
OHP 5.2 The differences in the development of imaginative abilities in children with autism and children without autism
·
OHP 5.3 The different rates of development of imaginative skills for four different young people
Suggested facilitator revision ·
You should have a sound understanding of this topic area before running the session; for example, read Chapter 7 of How to Live with Autism and Asperger Syndrome: Practical Strategies for Parents and Professionals, by Chris Williams and Barry Wright (Jessica Kingsley Publishers, London); further recommended reading is listed below.
Craig, J. and Baron-Cohen, S. (1999) ‘Creativity and imagination in autism and Asperger Syndrome.’ Journal of Autism and Developmental Disorders 29, 319–326. Currie, G. (2002) Recreative Imagination. Oxford: Oxford University Press.
Recap ·
If any participants have missed any of the previous sessions, it will be necessary for a member of the team to bring them up to speed on the topics covered so far. This could be done between sessions, or immediately before or at the end of this session.
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Give participants a brief reminder of the subject of the previous session: the difficulties associated with preoccupations, sensory interests and repetitive behaviours. 111
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Lead a discussion about sensory interests, preoccupations, and routines and compulsions, referring to the relevant chapters of Williams and Wright or Handout 4.1.
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Ask the participants if they have any examples of the preoccupations of their children and any potential triggers.
Introducing the theme: imagination Tell participants that you will be giving them a handout (Handout 5.1) at the end of the session, which summarizes the topics covered in this session. Begin a discussion of imagination and its development. Explain to participants that imaginative abilities are impaired in children and young people with autism and Asperger Syndrome. Ask them the question ‘What is imagination?’ Write their answers on the flip chart. Reponses may include the ability to: ·
have new ideas
·
think of things that aren’t present
·
role play
·
use make-believe
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pretend that one thing is something else (e.g. a pencil is an aeroplane)
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build new things with toy bricks or Lego
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make up stories.
Ask the participants to describe imaginative activities performed by more typically developing children that they know (e.g. their child with autism’s siblings, or their nephews or nieces). List their responses on the flip chart. Discuss how imagination develops, saying that imagination affects many different things. It has an influence over how we think. It affects time perception, planning and problem solving. Discuss the following ideas with the participants.
Imagination from memories We all have memories: things that we recognize that we have seen before or things that have happened in the past that we recall. We can conjure them up in our minds. This relies on memory but involves bringing into our minds something that is not present. All animals, including humans, can do this to a greater or lesser extent. Cats may know that when their owner is in the kitchen in the morning around a certain cupboard there is a good chance of food. Their bodies give them cues such as hunger or smell, but they also remember previous feeding events. We all have memories conjured by our perceptions (e.g. what we see, what we smell); this is the same for more typically developing children and children with autism.
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Weaving memories into imagination As imagination skills develop we may branch out from memories and create new possibilities. These may be based on things we have heard or seen on TV, which are memories, but we may weave them together in new ways. We are beginning to disentangle memories and knowledge and reconstruct them in our minds. We rebuild the memory and knowledge that we have, putting them together in new ways. For example, a child may have seen on television that you can take a plastic sledge and slide down a snow-covered hill. Knowledge tells the child that a bin liner has some of the properties of a plastic sledge, and so a bin liner may work too. The child tries the bin liner and is successful. Children may draw pictures of superheroes by borrowing from other pictures they have seen (e.g. taking the big muscles of one hero and blending them with the rubbery neck of another).
Imagination for planning Imagination may involve us planning. We consider options for the future and we plan out our day. We conjure these options and possibilities in our minds before accepting or discarding them. We imagine them.
Imagination for problem solving Imagination may involve us solving problems. If we have a problem that faces us, we may run through various solutions in our minds. These require imagination. How many of us have been insulted by someone and made a certain response, only to think later ‘I wish I had said something different’ and come up with witty alternatives. Our imagination works hard here.
Imagination for fantasizing We may fantasize in some situations about our ideal summer holiday or house, or about interaction. This requires imagination.
Imagination for social skills Imagination involves social skills: imagination and theory of mind interweave. When we are with new friends we try to guess what they are interested in. We ask them questions. We are trying to see if their interests line up with ours. We want to know if we have things in common and so will enjoy each other’s company. We also imagine what things we could do together and we make suggestions. Our imagination works to make guesses about what the other person is like. Imagination and theory of mind skills overlap. Children with autism have delayed imagination skills. These may develop, but usually do so more slowly. Using memory, knowledge, rules and facts is not usually
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a problem for children with an autism spectrum condition, but using imagination may be. Show the participants Figure 5.1 (see OHP 5.1 at the end of this session), which provides a visual explanation of the development of imagination.
PERCEPTION
USING MEMORY IN PLAY (copying, playing back observed events) e.g. copying mum baking using the same equipment
WEAVING MEMORIES (weaving together different memories into a new whole) e.g. making a picture of a superhero with SpiderMan’s web powers and Superman’s ability to fly
SYMBOLIZING (one thing represents another) e.g. pretending that the arm of the sofa is a horse
FANTASY (things that aren’t within our direct experience) e.g. pretending that we can predict the future
ABSTRACT (things that are not concrete or experienced, e.g. heaven) e.g. imagining what a soul is and what happens to it after we have died Figure 5.1 The development of imagination
Ask the participants whether they can think of examples that involve their child using imagination. Explain that it is important to recognize that delay in the development of imagination does not necessarily mean lack of creativity. People with an autism spectrum condition are often very creative, but they may use other skills to be so. Don’t forget throughout the course to celebrate the good things about children with ASCs. Avoid focusing too much discussion on the negatives. You can facilitate the discussion on imagination using the following examples. 114
IMAGINATION, TIME PERCEPTION, PLANNING AND MEMORY EXAMPLE 1
Tom acts out scenes from Thunderbirds every day. He knows whole episodes by heart. He does this by himself with Thunderbirds figures. Is this imagination? In fact Tom only ever repeats exact scenes. He becomes angry if his parents try to introduce new material and cannot cope when his father tries to change the plot. Tom is using memory to play. This is real play and is healthy for Tom, but he is not using much imagination in this play. To a casual observer seeing Tom play like this for the first time, it may look as though he is using a lot of imagination, but not to his parents who know him well. EXAMPLE 2
Ashley likes to play with her father. He winds up a toy car and gives it to her. She lets it go on a plastic runway and watches intently, getting very excited. When it comes to a stop she brings it back to him and he winds it up again. This is enjoyed by both of them but does not use imagination. Ashley is repeating something she knows because she enjoys it.
Explaining different degrees of imagination deficit Having a problem with imagination is not an ‘all or nothing’ concept. Imagination develops as we grow. There are different degrees of difficulty or developmental delay. The range of this skill varies in people on the autism spectrum as well those who are not. However, in children with autism, the level of imaginative ability is likely to be within a lower range or band. Show participants Figure 5.2 (see OHP 5.2 at the end of this session). Explain that Figure 5.2 shows the differences in the development of imaginative abilities in children with autism and in more typically developing children. It also demonstrates that the level of imaginative skills of some children with autism will struggle at a very basic level, while others will develop more skills. Children and young people with a diagnosis of Asperger Syndrome or high-functioning autism will usually be more likely to develop a greater level of imaginative ability. Show participants Figure 5.3 (see OHP 5.3 at the end of this session). Explain that Figure 5.3 illustrates the different rates of development of imaginative skills for four different young people: ·
John and Anthea are not on the autism spectrum but develop imaginative skills at different rates and to different levels of ability.
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James has Asperger Syndrome and develops imagination more slowly, but he achieves a good understanding as he approaches adulthood.
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Alice, who is more severely affected by autism, makes progress as she gets older but does not achieve the same level of imaginative ability. 115
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Imagination is a core difficulty for children and young people on the autism spectrum and very few will become flexible imaginative thinkers. They are more likely to go into jobs that require less imagination – those that are predictable and have logic and knowledge as key aspects. This therefore represents them playing to their strengths.
Development of imagination
Sophisticated
Range of imagination for children not on the autism spectrum (AS)
Good Range of imagination for children on the autism spectrum (AS)
Some
Poor Birth
6 yrs
12 yrs
18 yrs
Figure 5.2 The differences in the development of imaginative abilities in children with autism and children without autism
Anthea (not AS)
Development of imagination
Sophisticated
John (not AS) Good
James (Asperger) Alice (autism)
Some
Poor Birth
6 yrs
12 yrs
18 yrs
Figure 5.3 The different rates of development of imaginative skills for four different young people
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A few children with an ASC will develop small areas where they become very expert, and will use their skills and in-depth knowledge to be creative by drawing on their memory and experiences. For example, one child with Asperger Syndrome could draw very detailed pictures by calling on his knowledge of and expertise with regard to flowers. The pictures tended to be very similar but never quite the same. He sometimes used his knowledge to merge ideas from different aspects of the plant kingdom in very creative ways.
Break About 15 minutes. On reassembling, tell participants that they are now going to undertake an exercise in understanding imagination.
Exercise in understanding imagination Split the participants into two groups (e.g. two groups of five people). Give each group a large piece of paper and some pens of various colours. Explain that each group is going to design a board game together in 20 minutes. The group members are encouraged to work together collaboratively within their group to do this. One facilitator accompanies each group. The two groups are given slightly different rules (Handouts 5.2 and 5.3). It helps if one group does not know the rules given to the other group, though this is not essential.
Rules for group 1 Game players will be allowed to use only certain skills: memory, logic, rules, and knowledge or facts. Game players cannot use imagination. The game should be designed in whatever way the group chooses but must ensure that the aforementioned rules are abided by.
Rules for group 2 Design a game in whatever way the group wants – be as imaginative and innovative as you wish.
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Facilitator intsructions ·
Allocate at least one facilitator to each group. Support the groups but question them about what skills they are using (e.g. memory, imagination). Group 1 must not pursue any ideas that use imagination. This is much harder than the group might at first think. Encourage the group to think carefully about this.
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Five minutes before reassembling, ask the groups to consider what they might have done differently if the rules had been different (i.e. in group 1 if they had been allowed to use imagination and in group 2 if they had not been permitted to use imagination). This should provoke interesting discussion.
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Ask a spokesperson from each group to present their game to the other group.
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Encourage discussion of the challenge and the final game designs.
Example One group who were not allowed to use imagination came up with the following idea. The objective of the game is to fill a six-space disc with six different colours (a bit like the ‘Trivial Pursuit pie’). A six-colour die is thrown. The board has six large coloured squares. Each of the six coloured squares has an activity associated with it. When a particular colour is thrown on the dice, the person has to perform the activity or task (e.g. yellow might be to sing a song). The group where imagination is allowed usually comes up with games that are more flexible and creative, often using abstract ideas and imaginative ways of doing things. The exercise highlights how difficult it is to create and play games that do not call for the use of imagination. The rules need to be simple, clear, visual and rigid. Refer this back to children on the autism spectrum and how they cope with classroom tasks requiring imagination.
Next, ask the group to think of other ways in which a lack of imagination might affect tasks their children have been asked to do (e.g. at school or at home). Write their ideas on the flip chart and discuss them. If the following suggestions have not emerged from the discussion then you should introduce them.
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Understanding a joke/predicting a punchline Ask the group what they think when someone starts the joke ‘What is yellow and dangerous.’ (If they already know it they have to be quiet.) Ask for feedback on what was running through their minds. Most people will try and think of something that could fit the answer. They start by searching their memory and knowledge. However, they know it is a joke and so they then search for something that might be funny; they use their imagination to do this. Ask them if they have any suggestions. The punchline may be ‘shark-infested custard’ or ‘a banana with a machine gun’. It doesn’t matter – it conjures up an amusing image. Some children with autism will say ‘Don’t be silly, a banana couldn’t hold a machine gun’, and they may not find it funny.
Time perception Ask the participants what they believe their child thinks when they are told: ‘We are going into town later on.’ Write their responses on the flip chart. Concentrate on two aspects of the statement. ‘Later on’ may have little meaning for the child. They may hear the word ‘town’ and go and get their coat, then become cross that they don’t leave the house for another two hours while you wash up and get ready. Time perception requires imagination. You have to be able to project yourself into the future in your imagination. You have to imagine the period of time itself, how long it will be and what it is possible to fill the time with. Many children on the autism spectrum live firmly in the here and now. An ability to imagine what ‘later on’ means is also necessary, or for that matter any number of other phrases to do with time. Ask the participants to think of some examples. Write them on the flip chart. Examples might include: ·
tomorrow
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in a minute
·
later
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just a sec
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give me a moment
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this afternoon
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next week.
Many of these phrases are abstract. They are not concrete and clear. Children on the autism spectrum struggle with such usage. What does ‘next week’ mean? When does a week start and finish? What is ‘next’? What does it actually mean? We can imagine ourselves across time by using ‘getting the gist’ skills, but if we struggle with imagination and getting the gist, then time perception becomes a real problem for us.
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Planning and sequencing If we return to the earlier phrase ‘We are going into town later on’, what do children on the autism spectrum think of when we say ‘town’? Ask participants what their children want to do in town and why. Make a list of their ideas on the flip chart. Many participants will say that their child always wants to go into the same shops and do the same things. This is because they fall back on memory not imagination. They remember what ‘town’ meant last time (going to the toy shop, getting a sausage roll from the baker and then going to the supermarket). They want to do that again. They use their memory of what happened before to plan what will happen this time. When we go to town, we use our imagination to run through possibilities. We become excited about going to a new clothes shop to buy new clothes (children on the autism spectrum like to keep to the ones they know). We plan to try new places to eat. Children on the autism spectrum want the same things. Our imaginations play an important role in planning and ordering our lives. Memory plays an important role for the child with an autism spectrum condition. This difficulty understandably makes many classroom tasks very hard for such children.
Liking for ‘sameness’ There may be many reasons why children with autism like ‘sameness’ and repetition. Ask the participants for their suggestions and list these on the flip chart. Examples may include: ·
predictability makes them feel safe
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preoccupation with certain things may lead to repetition
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preoccupation with sensory interests may make them want to routinely experience certain things
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social difficulty and social anxiety may make new experiences frightening.
Imagination may also be a reason. A child may never imagine a new way of playing in the park and so may always go on the same apparatus and play in the same way that they have done before. They use their memory to plan their routines. Children need help to try new things otherwise their experiences become very restricted.
Taking things literally There may be language-based reasons why children with autism take things literally, as was discussed in a previous session, but imagination is also important. If a teacher says ‘Take your seats’ we may consider that this has a literal meaning but if we imagine the consequences of this then everyone would stand up and take their seats elsewhere. Why would the teacher want us to do this? Some children might consider this and not have a reason they can imagine. There must be an alternative explanation. What is this? This leads to problem solving, thinking of an alternative: ‘Perhaps it is a phrase I have not heard, like an idiom. It must mean “sit down”.’ 120
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Social problem solving In this way, if a child is faced with a difficult social situation, they may try to think their way out of it. This is called social problem solving. An example would be what you do when you discover that the child who has come to tea has no interest in the PlayStation games that you love and want to play. Many children with autism will prioritize the game and carry on. Social problem solving means trying alternatives – imagining other possibilities and suggesting them. What else might they be interested in? An ability to imagine allows various possibilities to be considered. Theory of mind (TOM) allows us to make guesses about what the other child might be interested in. Imagination allows us to consider our environment and consider the 20 different alternative things we could do. These two aspects work hand in hand to help us develop social relationships.
Group discussion Ask participants to consider ways in which imagination might affect their children’s behaviour. List examples on the flip chart and discuss why problems with imagination skills might impact on behaviour. (This consolidates previous discussions.) Ask participants to consider ways in which a delay in the development of imaginative skills might affect some of the behaviour strategies that adults commonly use. Note any ideas they have on the flip chart. Some typical answers might include: ·
problem solving in social situations may be difficult if imaginative skills are behind
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imagining the advantages and disadvantages of different situations may be difficult
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weighing up what is going on socially may call for imagination and flexibility of thought.
Questions and answers Allow a few minutes at the end of the session for participants to put any questions they may have about problems with imagination, time perception, planning and memory, or about topics discussed in the previous sessions.
Homework Distribute Handouts 5.1 and 5.4 to participants, explaining that the latter includes details of their homework: ·
Read Handout 5.1, ‘Session 5 summary: imagination, time perception, planning and memory’, or, for more detail, Chapter 7 in How to Live with 121
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Autism and Asperger Syndrome: Practical Strategies for Parents and Professionals, by Chris Williams and Barry Wright (Jessica Kingsley Publishers, London). ·
Think of some examples for the next session of ways in which problems with imagination affect your child.
Close the session.
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Handout 5.1
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Handout 5.1 Session 5 summary: imagination, time perception, planning and memory Imagination is a core difficulty for children and young people with an ASC. This is likely to have an impact on the way in which they play and also on other important factors such as understanding time, planning and being rather literal.
The development of imagination We believe that imagination develops in stages. Some of these stages are more difficult than others for children with an ASC. The first stage in which imagination develops is through memory. We remember things that have happened to us and things that we have seen.We can recall these incidents;we have a picture of them in our minds.Children with autism and Asperger Syndrome are often very able in this area. A child with autism may recall that, when she sits down at the table, food and drink arrives. She waits expectantly for this to happen because it did last time and the time before. The next stage is building on these memories, creating scenarios that have not actually occurred before. For example, a child may have seen on television that you can take a plastic sledge and slide down a snow-covered hill. Knowledge tells the child that a bin liner has some of the properties of a plastic sledge, and so a bin liner may work too. It is at this stage that the child with an ASC is often limited. She relies heavily on what she has actually experienced. To her, a sledge is only a sledge if it looks just like the sledge she used before.The third stage, which involves building on creating new scenarios, is one where we learn to plan ahead. We consider options of how we might spend the day, for example. Young people with an ASC are likely to find it difficult to plan ahead in this way and need visual prompts to assist them. This difficulty also has a huge impact on the child’s ability to engage in imaginative play, understand time, and to plan, and helps us to understand why they like things to be the same, are literal in their understanding and have difficulty with social problem solving.
Imaginative play EXAMPLE
Tom acts out scenes from Thunderbirds every day. He knows whole episodes by heart. He does this by himself with Thunderbirds figures. Is this imagination? In fact Tom only ever repeats exact scenes. He becomes angry if his parents try to introduce new material and cannot cope when his father tries to change the plot. Tom is using memory to play. This is real play and is healthy for Tom, but he is not
Copyright © Barry Wright and Chris Williams 2007
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Handout 5.1 Session 5 summary: imagination, time perception, planning and memory
using much imagination in this play. This may develop later, but meanwhile he is developing a good foundation on which to build his skills.
The development of imagination PERCEPTION USING MEMORY IN PLAY (copying, playing back observed events) e.g. copying mum baking using the same equipment WEAVING MEMORIES (weaving together different memories into a new whole) e.g. making a picture of a superhero with SpiderMan’s web powers and Superman’s ability to fly
SYMBOLIZING (one thing represents another) e.g. pretending that the arm of the sofa is a horse FANTASY (things that aren’t within our direct experience) e.g. pretending that we can predict the future ABSTRACT (things that are not concrete or experienced, e.g. heaven) e.g. imagining what a soul is and what happens to it after we have died Time perception Time perception requires imagination. You have to be able to project yourself into the future in your imagination. Many children on the autism spectrum live firmly in the here and now. You also have to be able to imagine what ‘later on’ means or for
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Handout 5.1 Session 5 summary: imagination, time perception, planning and memory
that matter any number of other phrases to do with time. These might include tomorrow, in a minute, later, just a sec, this afternoon, next week. ·
Many people with autism have difficulty understanding time indicators such as ‘in five minutes’ or ‘in a week’.
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The person with autism may become very agitated if information is given too far in advance because she is then focused on the event, which she thinks is about to occur.
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Sequencing problems mean that it is hard for the person to predict what is going to happen next. He may keep worrying about it and asking others repeatedly.
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The child may be dominated by the ‘here and now’, not being able to understand the concept of a few minutes, just a sec, later, this afternoon, tomorrow or next week.
Planning If we say to our child with autism ‘We are going into town later on’, what do they think of when we say ‘town’? Many children always want to go into the same shops and do the same things. This is because they fall back on memory not imagination. They remember what ‘town’ meant last time and want to do that again. When we go to town, we use our imagination to run through possibilities. Our imaginations play an important role in planning. Memory plays an important role for the child with an autism spectrum condition.
Liking for ‘sameness’ There may be many reasons why children with autism like ‘sameness’ and repetition (e.g. predictability makes them feel safe). However, imagination may be one of these: a child may not ever imagine themselves trying a new way of playing in the park and so may always go on the same apparatus.They need help to try new things otherwise their experiences become very restricted.
Taking things literally There may be language-based reasons why children with autism take things literally, as was discussed in a previous session, but imagination is also important. If a teacher says ‘Take your seats’ we may consider that this has a literal meaning but if we imagine the consequences of this then everyone would stand up and take their seats elsewhere. Why would the teacher want us to do this? Some children might consider this and not have a reason they can imagine. There must be an alternative Copyright © Barry Wright and Chris Williams 2007
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Handout 5.1 Session 5 summary: imagination, time perception, planning and memory
explanation. What is this? This leads to problem solving, thinking of an alternative: ‘Perhaps it is a phrase I have not heard, like an idiom. It must mean “sit down”.’
Social problem solving In this way, if a child is faced with a difficult social situation, they may try to think their way out of it. This is called social problem solving. Social problem solving means trying alternatives: imagining other possibilities and suggesting them.
Memory A particular strength for many children with an autism spectrum condition is their memory. They might remember the detailed facts around their topics of interests (e.g. the capacity of all the football grounds in the country or the exact livery of all steam engines). They often spot very small changes in their environment (e.g. the position of a particular ornament, the fact that paving flags have been washed or a tea towel has been moved).
Sense of humour Many children with autism really enjoy slapstick humour. They often have difficulty understanding verbal jokes. As they develop they sometimes become aware of the fact that other people laugh at jokes, and may join in with the laughter without any appreciation of the meaning of the joke.
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Handout 5.2
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Handout 5.2 Rules for group 1 for use in exercise 1.
Game players will be allowed to use only certain skills: memory, logic, rules, and knowledge or facts.
2.
Game players cannot use imagination.
3.
The game should be designed in whatever way you choose but must ensure that the aforementioned rules are abided by.
Copyright © Barry Wright and Chris Williams 2007
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Handout 5.3
Handout 5.3 Rules for group 2 for use in exercise Design a game in whatever way the group wants – be as imaginative and innovative as you wish.
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Handout 5.4
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Handout 5.4 Homework (Session 5) ·
Read Handout 5.1, ‘Session 5 summary: imagination, time perception, planning and memory’, or, for more detail, Chapter 7 in How to Live with Autism and Asperger Syndrome: Practical Strategies for Parents and Professionals, by Chris Williams and Barry Wright (Jessica Kingsley Publishers, London).
·
Think of some examples for the next session of ways in which problems with imagination affect your child.
Copyright © Barry Wright and Chris Williams 2007
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OHP 5.1
OHP 5.1 The development of imagination
PERCEPTION USING MEMORY IN PLAY (copying, playing back observed events) e.g. copying mum baking using the same equipment WEAVING MEMORIES (weaving together different memories into a new whole) e.g. making a picture of a superhero with SpiderMan’s web powers and Superman’s ability to fly SYMBOLIZING (one thing represents another) e.g. pretending that the arm of the sofa is a horse FANTASY (things that aren’t within our direct experience) e.g. pretending that we can predict the future ABSTRACT (things that are not concrete or experienced, e.g. heaven) e.g. imagining what a soul is and what happens to it after we have died
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OHP 5.2
OHP 5.2 The differences in the development of imaginative abilities in children with autism and children without autism
Development of imagination
Sophisticated
Range of imagination for children not on the autism spectrum (AS)
Good Range of imagination for children on the autism spectrum (AS)
Some
Poor Birth
6 yrs
12 yrs
18 yrs
Copyright © Barry Wright and Chris Williams 2007
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OHP 5.3
OHP 5.3 The different rates of development of imaginative skills for four different young people
Anthea (not AS)
Development of imagination
Sophisticated
John (not AS) Good James (Asperger) Alice (autism)
Some
Poor Birth
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6 yrs
12 yrs
18 yrs
Copyright © Barry Wright and Chris Williams 2007
SESSION 6
Managing Behaviour
Note More facilitators are required for the next session, ideally one per child represented. Before Session 7 begins, the facilitators need to have read this section of the book or sat in on Session 6, to help them guide participants in Sessions 7, 10 and 11.
Learning outcomes At the end of this session the participants will be able to: ·
describe how things that happen before, during and after a behaviour affect the behaviour itself and future behaviour
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identify the behaviours of their child that they would like to change
·
summarize how to use the template introduced in this session to address tackling a behaviour problem.
Session aims ·
To reinforce the knowledge that things that happen before, during and after a behaviour affect the behaviour itself and, more importantly, future behaviour
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To help participants to make decisions about which behaviours it will benefit children to change
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To explore ways in which the behaviour of children with an autism spectrum condition (ASC) may be different from that of typically developing children 133
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To discuss why some strategies for the management of behaviour are more or less effective in children with an ASC
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To give participants a template that will help them to make sense of their child’s particular behaviours and understand how to change them
Number of facilitators needed for this session ·
Two to three
Materials and handouts required for Session 6 Training materials required ·
Paper and pens
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Labels for participants to have a first-name badge (if these are still needed)
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Books on autism and Asperger Syndrome
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Flip chart
Handouts
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Handout 6.1 The influence of context on behaviour: Tom and his mum
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Handout 6.2 The FIRE wheel
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Handout 6.3 FIRE wheel example for Tom, a typically developing child
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Handout 6.4 Behaviour management template
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Handout 6.5 Jamie, aged seven, who has autism
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Handout 6.6 Completed template for Jamie
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Handout 6.7 Completed FIRE wheel for Jamie
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Handout 6.8 Ideas for strategies for Jamie
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Handout 6.9 Sonia, aged 13, who has Asperger Syndrome
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Handout 6.10 Completed template for Sonia
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Handout 6.11 Completed FIRE wheel for Sonia
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Handout 6.12 Ideas for strategies for Sonia
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Handout 6.13 Homework (Session 6)
MANAGING BEHAVIOUR
OHPs ·
OHP 6.1 The FIRE wheel
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OHP 6.2 FIRE wheel example for Tom, a typically developing child
Suggested facilitator revision ·
You should have a sound understanding of this topic area before running the session; for example, read Chapter 9 of How to Live with Autism and Asperger Syndrome: Practical Strategies for Parents and Professionals, by Chris Williams and Barry Wright (Jessica Kingsley Publishers, London); further recommended reading is listed below.
Aarons, M. and Gittens, T. (1999) The Handbook of Autism: A Guide for Parents and Professionals. London: Routledge. Davis, H., Day, C. and Bidmead, C. (2002) Working in Partnership with Parents. Oxford: Psychological Corporation. Fouse, B. and Wheeler, M.A. (1997) Treasure Chest of Behavioural Strategies for Individuals with Autism. Arlington, TX: Future Horizons. Ives, M. and Munro, N. (2002) Caring for a Child with Autism. London: Jessica Kingsley Publishers. Kaufer, F.H. and Saslow, G. (1969) ‘Behavioural Diagnosis.’ In C.M. Franks (ed.) Behaviour Therapy: Appraisal and Status. New York: McGraw-Hill, pp.417–444. Keenan, M., Kerr, K.P. and Dillenburger, K. (2000) Parents’ Education as Autism Therapists: Applied Behaviour Analysis in Context. London: Jessica Kingsley Publishers. Schopler, E. (1995) Parent Survival Manual: A Guide to Crisis Resolution in Autism and Related Disorders. New York and London: Plenum Press. Zarkowska, E. and Clements, J. (1994) Problem Behaviour and People with Severe Learning Disabilities: The STAR Approach. London: Chapman and Hall. Zarkowska, E. and Clements, J. (2000) Behavioural Concerns and Autistic Spectrum Disorders: Explanations and Strategies for Change. London: Jessica Kingsley Publishers.
Recap ·
If any participants have missed any of the previous sessions, it will be necessary for a member of the team to bring them up to speed on the topics covered so far. This could be done between sessions, or immediately before or at the end of this session.
·
Give participants a brief reminder of the subject of the previous session: imagination, time perception, planning and memory.
·
Lead a discussion about imagination, time perception, planning and memory, referring to the relevant chapter of Williams and Wright or Handout 5.1.
·
Ask the participants if they have come up with any examples of the ways in which these affect their own children’s behaviour.
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Introducing the theme: managing behaviour Remind participants that, over the previous five sessions, the main theories and difficulties associated with autism have been covered: ·
mindblindness
·
emotions
·
getting the gist
·
sameness
·
imagination
·
routine
·
preoccupations
·
time perception
·
sensory interests
·
planning
·
social interaction
·
memory
·
communication.
Linking these difficulties with behaviours All the aforementioned difficulties help us to understand the behaviour of children within the context of their autism spectrum condition (ASC). For this and the following sessions these difficulties will be linked with strategies for managing behaviours. The following questions will be considered. 1.
What is the behaviour we want to change?
2.
Why might it be happening?
3.
How might we deal with it?
The influence of context on behaviour Very importantly, in addition to the theories discussed, there is a need to understand that all behaviour occurs within a context. Things that happen before, during and after a particular behaviour will have an impact on whether or not the behaviour is likely to happen again. We are all probably familiar with the scenario of a small child having a temper tantrum in a supermarket when he has been told he can’t have a toy or sweets. It sometimes helps to make sense of the context of the tantrum by separating it into three parts: 1.
what happened before the tantrum started
2.
what happened during the tantrum
3.
what happened to bring the tantrum to an end.
Lead a discussion of this, presenting examples to the group (see below). (It is easier to start with simple examples of more typically developing children before presenting examples of children with an ASC.) Distribute Handout 6.1, and then read the following example to the group.
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MANAGING BEHAVIOUR EXAMPLE: TOM, AGED THREE, A TYPIC ALLY DEVELOPING CHILD IN A TYPIC AL SITUATION
Tom sees some sweets at the checkout in the supermarket. He decides that he wants them and picks them up. His mum, who is tired and in a hurry, says, ‘No sweets today, Tom.’ Tom starts crying and shouting louder and louder: ‘I want sweets!!’ He throws himself on the floor, kicking and screaming. Mum says ‘No’ again and Tom’s tantrum grows louder. Other shoppers are watching disapprovingly. Ending 1: Mum says ‘OK, just this time’ and buys him the sweets. Tom stops crying. Ending 2: Mum repeats ‘No sweets today, Tom’, leaves him to his tantrum, and ignores his behaviour and the disapproving looks. When she has paid the bill, Tom is still crying but his tantrum starts to subside. Explain that, in this scenario, something happened to start the behaviour, keep it going and end it: ·
before
·
during
·
end.
What did the child learn? Using the flip chart to note their answers ask the participants to say: ·
what happened before, during and after the event
·
what they think about each of the two endings; what the short-term and long-term effects of each are
·
what the child has learnt.
This is a simple and straightforward way of thinking about behaviour.
Other ways of thinking about the way context influences behaviour ABC
Some people use a system called ABC to describe this. ABC stands for Antecedents, Behaviour and Consequences. STAR
Some people (e.g. Zarkowska and Clements 1994) use the word STAR, where the letters stand for Settings, Triggers, Actions and Reinforcers.
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Another metaphor we sometimes use is that of behaviour as an unwanted fire that you have to extinguish. Show OHP 6.1 and ask participants to think of what the fuel for the fire is by considering where it happens and why (give them a copy of Handout 6.2 for reference). The Fuel in the example above may be Tom’s liking for sweets, his lack of understanding about payment and perhaps the fact that he has had them in the shop before (his memory and expectation). He may be hungry because his mum is shopping before lunch. Then consider what Ignites the fire: what is the spark or trigger? Tom sees the sweets and he craves them. His mum says no and lights the blue touchpaper to his tantrum. What can Regulate the fire? If mum walks away this may initially stoke the fire but lead to it dying down later. Mum negotiating with him but not saying yes or no may fan the flames. Finally, what can Extinguish the fire (or End the behaviour)? Giving Tom the sweets may stop the tantrum but may lead to a similar or worse problem next time. It becomes future fuel. Walking away may also extinguish the fire but have the advantage of making it less likely to happen next time. Distribute Handout 6.3 (FIRE wheel example for Tom, a typically developing child). Show OHP 6.2. Explain that it has been found that the FIRE metaphor is the best model to work with as it recognizes the importance of past experience and the circular nature of some behaviours. However, some facilitators may have a strong preference for other models mentioned above and may wish to use these in place of the FIRE model. Ask the participants the following question and record their answers on the flip chart. ·
Given all the theories discussed about children with an ASC, does the behaviour of a child with an ASC require different management?
Managing the behaviour of a child with difficulties on the autism spectrum requires a slightly different approach and will involve different strategies. Some strategies used with children without autism spectrum conditions will also work with children who have autism, but others may not. Ask participants to suggest possible reasons for this. In the discussion of the different management needs of children with an ASC that follows, you should ensure that the following points are discussed.
Behaviour as communication Although the behaviour of a child with autism communicates something to parents, it does so in a slightly different way to that for a more typically developing child. Typically developing children often intend to communicate something to us through their behaviour. For example, you may notice that a typical child having a tantrum might look at you to check and make sure that you are still watching them,
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so that he knows that you know he is upset! This is theory of mind. A young child with autism will not appreciate the importance of intentionally communicating because he has mindblindness; he cannot fully understand that he has to tell you what he wants. Instead, he might sit at the table, for example, or scream loudly until some food or a drink arrives. He has learnt that something usually happens following this behaviour, but he does not do it consciously to communicate to you. Parents often have to guess what such a child wants. In this way the child with autism having a tantrum is expressing their distress at not getting what they want. If given what they want when they have a tantrum, they may learn to associate the tantrum with getting what they want, but they will not understand the reactions and thoughts and feelings of the adult involved very well. A further example of this point is discussed next.
Praise and approval These concepts are less likely to be helpful in younger children with autism. The mindblindness of such children prevents them from deliberately wanting to please. Saying ‘Mummy will be very happy if you put your coat on nicely’ will be irrelevant to them. As mindblindness improves with age and understanding, however, praise may become more effective. This does not mean that children with autism should not be praised, because otherwise they will never learn to receive praise and understand it, but it does mean that when they are younger they are unlikely to change their behaviour in search of your praise and approval.
Inducing guilt It is hard for children and young people with an ASC to appreciate the impact their behaviour has on others. Saying ‘You have made me late for work because you weren’t ready on time’ will be meaningless because of their difficulties with understanding others’ emotions and their mindblindness.
Abstract or complex language Saying to a child who is misbehaving in class before lunch ‘So you don’t want any lunch then?’ may signal to a child without autism that they need to improve their behaviour before being released for lunch. This abstract and wordy phrase would not be understood by a child with autism. They would have problems ‘getting the gist’. Ask participants the following question and record their answers on the flip chart: Why do some parents of children with an ASC feel ‘stuck’ and find it difficult to change their child’s behaviour?
Several typical answers about why some parents feel ‘stuck’ are offered below.
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·
They may think that, because the child has an ASC, he doesn’t understand what is expected of him, so they allow him to do as he wants. (Children with an ASC can still learn to behave appropriately, even though they may not understand)
·
They have tried everything and nothing works, so why bother trying any more? (It is much harder and it takes much longer to help some children with an ASC but there are many strategies that work well with most behaviours)
·
Parents and/or grandparents feel sorry for the child and so give her what she wants most of the time. (All children need to know that they cannot have everything they want all of the time; they will find it very difficult when they go to school if they have not learnt this earlier)
·
Parents may become exhausted or depressed, feeling that they cannot cope. (Most parents of children with an ASC will feel like this at times, and will benefit from support and respite)
·
Parents may let their child dictate to them when they are younger, leading them to expect to continue to do so as they get older. (Children with an ASC need to be taught that they cannot dictate)
·
The child becomes increasingly aggressive, leading parents to become afraid that he may hurt himself or others. (Parents often benefit from help from professionals to change their child’s aggressive behaviour)
·
There are just too many behaviours to tackle. Parents wouldn’t know where to start. (Parents often find this overwhelming)
Copy out the table below on the flip chart, then ask participants the question that follows. My child now
My child in the future
Is the problem behaviour likely to impair my child’s social or intellectual development?
How do we decide if we should change a behaviour?
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Say that the table you have drawn on the flip chart offers a really simple and useful way to help them make this decision. Ask participants for examples of problem behaviours and write their ideas in the appropriate boxes on the flip chart. Now, ask participants the following question: Why is it important to try to tackle problem behaviours early rather than leave them?
Note their responses on a new flip chart sheet. Try to draw out some of the following answers in response to this question. ·
Children with an ASC develop strong patterns of behaviour and expectations, and are more likely to want to stick rigidly to those patterns. The longer unhelpful or unhealthy patterns are established, the harder they may be to break.
·
Children with an ASC often don’t realize the impact their behaviours have on others and so won’t have this as a motivation to change them for themselves.
·
Children with an ASC tend to want their own way. This isn’t selfishness, it is to do with mindblindness. Many people say things like ‘Poor things, let them have their own way.’ The trouble with this way of thinking is that if they always get their own way they get used to it and as they get older it can make socializing much harder and can lead to aggression when things do not go the way they want.
·
They can learn to cope if they don’t get what they want, and this is an important skill for them.
Break About 15 minutes. On reassembling, tell participants that they are now going to undertake an exercise that focuses on behaviour and children with an ASC.
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Exercise: behaviour and children with an ASC Explain that understanding behaviour is often much more complicated with a child on the autism spectrum. We have to think about all the reasons to do with the way the child’s autism affects him, as well as the context. Encourage the participants to bear in mind that the object of the exercise is to try to find out why the child is behaving in a particular way in order to help them, and to try to find ways of reducing the likelihood of the behaviour happening again. Present the appropriate scenario, or role-play it (there are two different scenarios, one related to a child with autism and the other about a child with Asperger Syndrome; the best one to use will be dependent on whether the group is for parents of children with autism or Asperger Syndrome).
Exercise focusing on a child with autism, using the template and FIRE wheel Note: if you are running a group for parents of children with Asperger Syndrome, use the exercise on page 145. Give each participant a copy of the blank behaviour management template (Handout 6.4) to use as they go along. This is structured and clear, and guides participants through the process.
Scenario 1: Jamie, aged seven, who has autism Give participants Handout 6.5, which presents text about Jamie. Jamie was out in town with his grandma. She needed to use the toilet and thought Jamie did too. Jamie was becoming very anxious. Jamie’s mum had explained that if they needed the toilet while they were out, grandma should take Jamie into the disabled toilet and not use the hand drier because he hated the noise of them. There was no disabled toilet nearby so his grandma tried to explain to him that they would be very quick and said they wouldn’t switch the drier on. They managed to use the toilet despite Jamie’s anxiety and were washing their hands when another person switched on the drier. Jamie became hysterical with fear and ran out of the public toilets screaming. Grandma ran after him and when she eventually caught up with him tried to reassure him. Since then he has refused to go into public toilets. Prior to this, his parents had always planned their trips out around places they knew had disabled toilets, and always allowed plenty of time to ensure that the toilets were quiet. At school, he was allowed to use the staff toilet rather than the boys’ toilet with a drier. Ask the participants to think about any behaviours in this scenario that might be to do with the following: ·
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situations
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·
triggers
·
mindblindness
·
getting the gist
·
imagination
·
preoccupations and sensory experiences
·
social interaction
·
communication
·
emotions
·
‘sameness’
·
responses of others.
Make a note of participants’ responses on the flip chart. Ask the group what happened that made Jamie’s behaviour worse or that may affect his behaviour in the future. The participants may suggest some of the following ideas; you should also offer suggestions. ·
Situations: public toilets. OK in private disabled toilets with a parent who tells him they won’t switch on the hand drier.
·
Triggers: hand driers being switched on. OK in toilets without hand driers.
·
Mindblindness: he doesn’t understand that other people may switch on the drier.
·
Getting the gist: he doesn’t get the gist about hand driers (that people need to dry their hands or the purpose of the noise).
·
Imagination: he can’t imagine not feeling anxious about toilets and driers.
·
Preoccupations and sensory experiences: Jamie is very sensitive to noise. He particularly dislikes sudden, loud noises.
·
Social interaction: he is OK if there is no one else in the public toilet but extremely anxious if the toilet is busy. It is possible that he does not feel in control.
·
Communication: he may be very literal in his understanding. Grandma said they wouldn’t switch the drier on.
·
Emotions: he was anxious about going into the toilets, and possibly angry and upset that the drier was switched on unexpectedly.
·
‘Sameness’: Jamie had become used to disabled toilets and didn’t like the other toilets.
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·
Responses: due to Jamie’s extreme reactions in the past, his parents tried very hard to avoid public toilets without disabled facilities, so he had very little experience of other toilets and hence not much chance to get used to them in a safe way.
Tell participants these comments are all covered in the completed template for Jamie (Handout 6.6). Distribute copies of this handout to participants. Now, ask the group to underline the factors on Handout 6.6 they think are most important and transfer these to the blank FIRE wheel (Handout 6.2). You should have a blank FIRE wheel drawn up on the flip chart (or use OHP 6.1) and transfer the important information from the template to the wheel in the appropriate sections as shown in Handout 6.7, which shows a completed FIRE wheel for Jamie. Give out copies of Handout 6.7.
Strategies Ask participants to think about and suggest any possible ideas or ways of tackling Jamie’s problems. Make a note of their ideas on the flip chart. Point out that this is simply an example of the process that they will be using in forthcoming sessions with individual facilitators: there are no right or wrong answers. Intervention plans are based on individual families’ situations. Parents know their children best. They are in the best position to decide whether an idea is likely to be successful or not for them. Tell participants that, when they are working on their children’s problem in the next session with the individual facilitators, any planned interventions will be carefully discussed and based firmly on parental knowledge and expertise.
Planning strategies: what is the goal? Refer participants back to Handout 6.6 and highlight that, at the beginning of the template, Jamie’s parents broke down their goals for Jamie as follows: 1.
to tolerate going into disabled toilets again
2.
to tolerate the noise of driers in public toilets without using them
3.
to use driers in public toilets.
Ask the participants to suggest possible strategies that Jamie’s parents might find useful in helping him. Write them up on the flip chart and try to ensure that some of the following are included. Mindblindness and getting the gist: Jamie’s parents wrote a Social Story™ to help him understand about toilets and hand driers. This also helped him to imagine a different scenario and outcome. (Social Stories™ are covered in Session 9; you may want to give participants a very brief explanation of what these are at this point.)
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Jamie’s parents’ first goal was to help him to tolerate disabled toilets again. Their first Social Story™ was very simple and factual: My name is Jamie. I like going to town with my mum. Sometimes we go to the shop to buy stickers. Sometimes I need to use the toilet when we are in town. This is OK. My mum will take me to the special disabled toilet. It is very quiet there. When I have done a wee, I will wash my hands and dry them on a paper towel. Then we will walk out of the disabled toilet and go shopping. Shopping is fun!
The plan was to familiarize Jamie with these toilets before moving on to subsequent stories. Once his parents had worked on the other strategies described below, they added other scenarios, such as ‘Sometimes other people like to dry their hands using the hand drier. The noise is like my hairdryer at home. This is OK.’ Preoccupations and sensory experiences: to help him to get used to the noise of the hand drier, they decided to use a ‘desensitization’ approach. First they tape-recorded the noise of a hand drier. They also recorded other household noises and decided to make the desensitization into a guessing game. They kept the volume down very low at first, and gradually turned it up to full volume over the period of a few weeks. They also took some photographs of different driers in town and incorporated these into Social Stories™. Later, they planned to help him tolerate the noise in the actual situation by having one parent standing with him at the door of the public toilets and the other going in to switch on the drier. Social interaction and control: Jamie did not feel in control of the noise. His parents helped him to establish control of another noise by letting him switch a hairdryer on and off (under supervision). Eventually he was able to dry his own hair happily and was comfortable watching his mum dry her hair. Give out Handout 6.8 (Ideas for strategies for Jamie).
Exercise focusing on a child with Asperger Syndrome, using the template and FIRE wheel Give each participant a copy of the blank behaviour management template (Handout 6.4) to use as they go along. This is structured and clear, and guides participants through the process.
Scenario 2: Sonia, aged 13, who has Asperger Syndrome Give participants Handout 6.9, which presents text about Sonia. Sonia, aged 13, has Asperger Syndrome. Her parents are struggling with her sudden angry outbursts. She is very argumentative and persistently asks her mother if she can do something despite being told repeatedly that she can’t (asking if she can stay up to watch 145
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a TV programme, for example). Her mother typically becomes more and more cross with her and eventually loses her temper. Sonia usually flies into a rage at this point, throwing things around the room. Her mum ends up sending her to her room and both of them feel angry and exhausted. Sonia’s temper was also affecting her sister. Yesterday Sonia was carefully sorting through her DVD collection. She was putting them in a special order according to production dates. Her younger sister, Jenny, who was sitting nearby, saw The Lion King and picked it up excitedly saying, ‘Let’s watch this now. We could ask Jo and Harry over to watch it with us.’ Sonia became annoyed with Jenny, shouting, ‘It’s mine!’ Jenny held on to it saying, ‘No. I want to watch it.’ In her rage Sonia bit Jenny hard on the arm. She pulled the DVD off her and went back to sorting out the DVDs. When their mother came in to find out what all the commotion was about she was appalled to see that Jenny’s arm was bruised and bleeding from a bite mark. Jenny cried, ‘Sonia bit me!’ Sonia screamed angrily, ‘She took my DVD!’ When her mother asked Sonia why she had done such a dreadful thing, she swore at her mother and started throwing the DVDs around the room. Her mother shouted to her to stop, and sent her to her room. She was told that as punishment she was not allowed to go to the cinema as planned that evening. Later when her mum went to talk to her about the incident she found Sonia watching TV. Sonia still blamed Jenny, insisting that if Jenny hadn’t taken the DVD she wouldn’t have bitten her. When her mother asked her what she could have done differently Sonia didn’t know. This was fairly typical of Sonia’s behaviour. She had great difficulty taking responsibility for her actions and seemed not to know how to deal with conflict situations. Ask the participants to think about any behaviours in this scenario that might be to do with the following: ·
mindblindness
·
getting the gist
·
imagination
·
preoccupations and sensory interests
·
social interaction
·
communication
·
emotions
·
‘sameness’
·
routine.
Make a note of participants’ responses on the flip chart. Encourage the group to consider what happened that made Sonia’s behaviour worse or that may affect her behaviour in the future. The participants may suggest some of the following ideas; you should also offer suggestions. ·
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Mindblindness: Sonia doesn’t appreciate others’ points of view. She is engrossed in her own activity of sorting DVDs and isn’t aware of her sister’s needs. She also probably has difficulty understanding others’ facial expressions. When her mother is getting cross about her persistent questioning, Sonia may
MANAGING BEHAVIOUR
not notice the more subtle changes in her face or voice, which other young people might. It is only when her mother is very angry that she sees this. She isn’t concerned about her sister’s hurt arm or her distress because she cannot put herself in her sister’s place. ·
Getting the gist: Sonia doesn’t appreciate the social implications of watching a DVD with friends and is more interested in sorting her DVDs.
·
Imagination: she likes to sort her DVDs. Her play is rarely imaginative or social.
·
Preoccupations: her preoccupation with sorting and ordering the DVDs interferes with her ability to engage in other things.
·
Sensory interests: Sonia likes to line things up and order them. She is using production dates.
·
Social interaction: Sonia doesn’t pick up the usual cues about social interactions. She doesn’t appreciate that there are alternative ways of interacting, and acts impulsively. Even when she has calmed down she struggles to think what she might have done differently. She doesn’t realize the impact her behaviour has on her relationships.
·
Communication: Sonia is not good at communicating her needs, or negotiating with her sister.
·
Emotions: Sonia finds it hard to recognize her own emotions as well as those of others. She doesn’t recognize her angry feelings easily and tends to fly into a rage quickly.
·
‘Sameness’: Sonia likes to have her DVDs ordered in a certain way.
·
Routine: Sonia likes to stick to certain routine ways of doing things. She likes order in her life.
·
Time perception: Sonia has difficulty waiting for things, but she understands time.
·
Planning: she doesn’t plan or think about the consequences of her actions.
·
Memory: she has a good memory (for example, knows lots about all her DVDs).
·
Before, during and after:
before: Sonia has a clear idea in her head as to what she wants to happen; her sister is near her and is more interested in social activity; the girls both want to use the DVDs for different things during: Sonia does anything she can to stop her sister having the DVD after: the consequences of the incident in which Sonia bit her sister were not of much concern to Sonia; being sent to her room took her out of a stressful situation to the calm of watching TV. 147
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Tell participants these comments are all covered in the completed template for Sonia (Handout 6.10). Distribute copies of this handout to participants. Now, ask the group to underline the factors on Handout 6.10 they think are most important and transfer these to the blank FIRE wheel (Handout 6.2). You should have a blank FIRE wheel drawn up on the flip chart (or use OHP 6.1) and transfer the important information from the template to the wheel in the appropriate sections as shown in Handout 6.11, which shows a completed FIRE wheel for Sonia. Give out copies of Handout 6.11.
Strategies Ask the group to think about and suggest any possible ideas or ways of tackling Sonia’s problem. Make a note of their ideas on the flip chart. Point out that this is simply an example of the process that will be used in forthcoming sessions with individual facilitators: there are no right or wrong answers. Intervention plans are based on individual families’ situations. Parents know their children best. They are in the best position to decide whether an idea is likely to be successful or not for them. Tell participants that, when they are working on their children’s problem in the next session with the individual facilitators, any planned interventions will be carefully discussed and based firmly on parental knowledge and expertise. Ask the participants to suggest possible strategies that Sonia’s mum might find useful in helping her. Write them up on the flip chart and try to ensure that some of the following are included.
Planning strategies Mindblindness and understanding emotions: Sonia and her mother agreed that part of the problem was that Sonia could not recognize anger in herself or in others very easily. In order to help her to understand when her mother was becoming angry, her mum agreed that she would tell Sonia how she was feeling and use a yellow and red card system. For example, when Sonia was repeatedly asking questions her mum would say something like ‘You have already asked me if you can play your computer game. I said not today. I said you can play with it after school tomorrow. I will get angry.’ If Sonia persisted, her mum would say, ‘Stop. You are making me angry. If you ask once more you will get a yellow card.’ If Sonia persists she is shown a yellow card. The yellow card is used as a warning. Sonia knows that if she asks again she will be shown a red card, which means that she is sent to her room. The plan was that this would help Sonia to recognize that both of them would probably be feeling very angry by this stage and to teach her that walking away (to her room) from such situations would help her not to fly into a rage. In order to help Sonia to understand emotions better, her mum also decided that they would watch their favourite TV programmes together and that she would comment on situations and the emotions of the characters. 148
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Preoccupations: on realizing that DVDs were beginning to take over a great deal of Sonia’s time and hence restrict her from developing other interests, her mother decided to help her limit the time she spent watching and sorting out her collection. Social interaction and social problem solving: Sonia’s mother wanted to help Sonia to consider different ways of interacting with her sister and other people. She decided to use the social problem-solving sheet below. 1. What happened (describe situation that was bad)
2. What I did 3. What and why I did other people it did
Jenny took my DVD
I wanted my DVD back. She wouldn’t give it to me so I bit her
4. What happened next
5. What good things came out of it
6. What bad things came out of it
Jenny cried. Mum sent Mum told me me to bed off
Nothing
I got sent to bed. I wasn’t allowed to go to the cinema. I was angry. Mum was angry
7. Alternative things I could have done
8. Good things that would have come from this
8. Bad things that would have come from this
A Not bitten her. Told mum
I wouldn’t have been told off
None
B Ask Jenny nicely instead of shouting at her
I wouldn’t have been sent to bed and I would have been able to go to the cinema
None
C D E F
First they filled it in regarding the incident described above, and later filled in other incidents that occurred. Give out Handout 6.12 (Ideas for strategies for Sonia).
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Preparation for the next session ·
For participants: at the end of this session, explain that in the next one the group will be working on their children’s individual problems and that there will be a number of additional facilitators to help. Ideally there should be one facilitator for each child represented at the group. It is important that the parents have a good idea of the behaviour they would like to work on. They may find it helpful to go back to the question ‘How do we decide if we should change a behaviour?’ discussed in this session (page 142).
It is wise, before the end of this session, to check with the participants that they have a particular problem they would like to work on with a facilitator. Occasionally participants can find this very difficult. If this is the case they may prefer to use the next session to hear more about general strategies for children with autism spectrum conditions. You may need to be flexible. ·
For facilitators: ensure that the facilitators for the following week are well briefed. Match them to appropriate families and list them on a flip chart sheet ready to show at the beginning of the next session.
Questions and answers Allow a few minutes at the end of the session for participants to put any questions they may have about problems with managing behaviour, or about topics discussed in the previous sessions.
Homework Distribute Handout 6.13 to participants, explaining that it includes details of their homework: ·
Read Chapter 9 in How to Live with Autism and Asperger Syndrome: Practical Strategies for Parents and Professionals, by Chris Williams and Barry Wright (Jessica Kingsley Publishers, London).
·
Think about some of the things that your child does or doesn’t do that you would like to be different; try to narrow them down to one or two in particular that you would like to work on over the next few weeks; and make them as specific as possible.
Close the session.
Reference Zarkowska, E. and Clements, J. (1994) Problem Behaviour and People with Severe Learning Disabilities: The STAR Approach. London: Chapman and Hall.
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Handout 6.1
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Handout 6.1 The influence of context on behaviour: Tom and his mum Example: Tom, aged three, a typically developing child in a typical situation Tom sees some sweets at the checkout in the supermarket. He decides that he wants them and picks them up. His mum, who is tired and in a hurry, says, ‘No sweets today, Tom.’ Tom starts crying and shouting louder and louder: ‘I want sweets!!’ He throws himself on the floor,kicking and screaming.Mum says ‘No’ again and Tom’s tantrum grows louder. Other shoppers are watching disapprovingly. Ending 1:Mum says ‘OK,just this time’ and buys him the sweets.Tom stops crying. Ending 2:Mum repeats ‘No sweets today,Tom’,leaves him to his tantrum, ignores his behaviour and the disapproving looks. When she has paid the bill, Tom is still crying but his tantrum starts to subside. In this scenario, something happened to start the behaviour, keep it going and end it: ·
before
·
during
·
end.
What did the child learn?
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Handout 6.2
Handout 6.2 The FIRE Wheel One metaphor sometimes used is that of behaviour as an unwanted fire that has to be extinguished.It helps to think what is the Fuel of the fire by considering where it happens and why,such as what has gone before and how the personalities involved affect the build-up of the behaviour.The fuel in the example in Handout 6.1 may be Tom’s liking for sweets, his lack of understanding about payment and perhaps the fact that he has had them in the shop before.He may be hungry because his mum is shopping before lunch. Next, consider what Ignites the fire: what is the spark or trigger? Tom sees the sweets and he craves them. What can Regulate the fire? If mum walks away this may initially stoke the fire but lead to it dying down fairly quickly. Mum negotiating with him but not saying yes or no may fan the flames. Finally,what can Extinguish the fire (or End the behaviour)? Giving Tom the sweets may stop the tantrum but may lead to a similar or worse problem next time. Walking away may also extinguish the fire but have the advantage of making it less likely to happen next time. A blank FIRE wheel is shown below. Handout 6.3 shows a FIRE wheel that has been filled in using Tom’s behaviour as an example.
FIRE: A metaphor for thinking about behaviour 4. What EXTINGUISHES the behaviour? What finally brings the behaviour to an end?
What happens in 2, 3 and 4 of this cycle that is Fuel for the Future?
1. What is the FUEL for the behaviour? What are the factors in the child, the adults around or the environment that make the behaviour more likely to happen? (Include the way the child views the world, personality)
Child
3. What REGULATES the behaviour? What responses or reinforcers make the behaviour go on for longer? What shortens the behaviour or makes it go away?
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Parents and other people
Copyright © Barry Wright and Chris Williams 2007
2. What IGNITES the behaviour? What lights up, triggers or ignites the behaviour?
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Handout 6.3
Handout 6.3 FIRE wheel example for Tom, a typically developing child
1. What is the FUEL for the behaviour? What are the factors in the child, the adults around or the environment that make the behaviour more likely to happen? (Include the way the child views the world, personality)
FIRE: A metaphor for thinking about behaviour 4. What EXTINGUISHES the behaviour? What finally brings the behaviour to an end?
What happens in 2, 3 and 4 of this cycle that is Fuel for the Future?
Child becomes more powerful next time
Tired, stressed and in a hurry
Child Makes behaviour more likely next time
3. What REGULATES the behaviour? What responses or reinforcers make the behaviour go on for longer? What shortens the behaviour or makes it go away?
Tantrum stops
Sees sweets, hungry. Takes sweets
Child happy
Angry
Mum says “No”
Gives sweets Parents and other people
Copyright © Barry Wright and Chris Williams 2007
2. What IGNITES the behaviour? What lights up, triggers or ignites the behaviour?
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Handout 6.4
Handout 6.4 Behaviour management template A template for helping make sense of a child’s behaviour and planning ways to help. 1.
What is the problem? ______________________________________
What does she do (or not do) that you would like to be different? Be specific and not general (e.g. refuses to put shoes on rather than problems getting dressed). 2.
Why does the child behave in this way at present?
Situations and settings Where does it happen? Where does it not happen? Who is around when it happens?
Triggers and timings When does it happen? What are the timings in relation to other things? When does it not happen? What is the trigger?
Mindblindness Does the child realize they need to communicate their needs to someone? Can the child see others’ points of view, or understand the feelings and needs of others in this situation? Getting the gist Do they understand the meaning of events and the context?
Imagination Does the child think imaginatively? Does this affect behaviour?
Preoccupations and sensory experiences Is the problem associated with sensory experiences or preoccupations?
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Handout 6.4 Behaviour management template
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Social interaction Does the child do this on their own or with others? How does this affect the behaviour?
Communication Is the problem associated with communication difficulties?
Emotions Is it related to anxiety or the child’s temperament? Is there anything that might be upsetting the child (e.g. memories, illness, tiredness, boredom)? ‘Sameness’ Is it to do with a need for routine or habits? Is there a need to be in control? Has there been a change of routine at home or at school?
Responses How have others responded? Does something happen after the behaviour that is important? How does it affect the behaviour in the future?
Benefits What benefits happen for you? What benefits happen for your child? (Rack your brains – there usually are some)
Now underline (or mark with a highlighter pen) all those factors above that you think are important in your child’s behaviour.Put the key points into the blank FIRE wheel below. The inner ring is for things to do with the child; the outer ring is for things to do with parents or other people. Each quadrant deals with a different aspect of what has happened. The first one,in the upper-right corner,is what Fuels the behaviour;for example,what situations or settings the behaviour is more likely to happen in,and what has led up to the behaviour.What are the problems the child has to do with autism (like mindblindness or preoccupations) that make the behaviour more likely? The bottom-right corner is for the things that Ignite the behaviour: the triggers that happened just before. The bottom-left quadrant is for Copyright © Barry Wright and Chris Williams 2007
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Handout 6.4 Behaviour management template
those things that Regulate the behaviour: things that the child or parent did at the time that made the behaviour get better or worse.The upper-left quadrant is what Extinguished (Ended) the behaviour. Finally, consider anything that has happened that adds Fuel for the future. What has happened that may make the behaviour more or less likely to happen again? Highlight or underline this.
FIRE: A metaphor for thinking about behaviour
4. What EXTINGUISHES the behaviour? What finally brings the behaviour to an end?
What happens in 2, 3 and 4 of this cycle that is Fuel for the Future?
1. What is the FUEL for the behaviour? What are the factors in the child, the adults around or the environment that make the behaviour more likely to happen? (Include the way the child views the world, personality)
Child
3. What REGULATES What responses or reinforcers make the behaviour go on for longer? What shortens the behaviour or makes it go away?
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Parents and other people
Copyright © Barry Wright and Chris Williams 2007
2. What IGNITES the behaviour? What lights up, triggers or ignites the behaviour?
Handout 6.5
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Handout 6.5 Jamie, aged seven, who has autism Jamie was out in town with his grandma. She needed to use the toilet and thought Jamie did too. Jamie was becoming very anxious. Jamie’s mum had explained that if they needed the toilet while they were out, grandma should take Jamie into the disabled toilet and not use the hand drier because he hated the noise of them. There was no disabled toilet nearby so his grandma tried to explain to him that they would be very quick and said they wouldn’t switch the drier on.They managed to use the toilet despite Jamie’s anxiety and were washing their hands when another person switched on the drier. Jamie became hysterical with fear and ran out of the public toilets screaming.Grandma ran after him and when she eventually caught up with him tried to reassure him. Since then he has refused to go into public toilets. Prior to this, his parents had always planned their trips out around places they knew had disabled toilets, and always allowed plenty of time to ensure that the toilets were quiet. At school, he was allowed to use the staff toilet rather than the boys’ toilet with a drier.
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Handout 6.6
Handout 6.6 Completed template for Jamie 1.
What is the problem? Screams, goes rigid with fear and panic when he hears noise of hand driers.
2.
Why does the child behave in this way at present?
Situations and settings Where does it happen? Where does it not happen? Who is around when it happens?
Public toilets. Doesn’t happen in disabled loo when with adult who promises not to switch hand drier on. Can tolerate hairdryer at home.
Triggers and timings When does it happen? What are the timings in relation to other things? When does it not happen? What is the trigger?
If hand drier goes on unexpectedly. Noise.
Mindblindness Does the child realize they need to communicate their needs to someone? Can the child see others’ points of view, or understand the feelings and needs of others in this situation?
Not at all.
Getting the gist Do they understand the meaning of events and the context?
No. Doesn’t know why people wash and dry hands after toilet.
Imagination Does the child think imaginatively? Does this affect behaviour?
He can’t imagine not feeling frightened.
Preoccupations and sensory experiences Is the problem associated with sensory experiences or preoccupations?
Noise sensitivity. Sight and sound together trigger fear. Hates the sensation of hot air on face – too close.
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Handout 6.6 Completed template for Jamie
Social interaction Does the child do this on their own or with others? How does this affect the behaviour?
Other people’s presence in the toilet makes it worse – unpredictable. Jamie unable to control hand drier noise.
Communication Is the problem associated with communication difficulties?
Doesn’t understand that the drier will switch itself off.
Emotions Is it related to anxiety or the child’s temperament? Is there anything that might be upsetting the child (e.g. memories, illness, tiredness, boredom)?
Worse after incidents when driers in unfamiliar places have been particularly noisy. Much worse in noisy motorway toilets. Strong aversive memories.
‘Sameness’ Is it to do with a need for routine or habits? Is there a need to be in control? Has there been a change of routine at home or at school?
Prefers familiar and routine of ‘safer’ toilets. Much better since allowed to use quiet (no hand drier) staff toilet at school.
Responses How have others responded? Does something happen after the behaviour that is important? How does it affect the behaviour in the future?
Due to Jamie’s extreme reactions in the past, his parents tried very hard to avoid public toilets without disabled facilities, so he had very little experience of other toilets and hence not much chance to get used to them in a safe way. Parents have found that keeping calm themselves, offering reassurance and lightening the situation helps (e.g. saying in a funny voice ‘That wasn’t so bad!’).
Benefits What benefits happen for you? What benefits happen for your child? (Rack your brains – there usually are some)
Can’t think of any.
Now underline (or mark with a highlighter pen) all those factors above that you think are important in your child’s behaviour.Put the key points into the blank FIRE wheel below. The inner ring is for things to do with the child; the outer ring is for things to do with parents or other people. Each quadrant deals with a different aspect of what has happened. The first one,in the upper-right corner,is what Fuels the behaviour;for example,what situations or settings the behaviour is more likely to happen in,and what has led up to the behaviour.What are the problems the child has to do with autism (like mindblindness or preoccupations) that make the Copyright © Barry Wright and Chris Williams 2007
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Handout 6.6 Completed template for Jamie
behaviour more likely? The bottom-right corner is for the things that Ignite the behaviour: the triggers that happened just before. The bottom-left quadrant is for those things that Regulate the behaviour: things that the child or parent did at the time that made the behaviour get better or worse.The upper-left quadrant is what Extinguished (Ended) the behaviour. Finally, consider anything that has happened that adds Fuel for the future. What has happened that may make the behaviour more or less likely to happen again? Highlight or underline this.
FIRE: A metaphor for thinking about behaviour
4. What EXTINGUISHES the behaviour? What finally brings the behaviour to an end?
What happens in 2, 3 and 4 of this cycle that is Fuel for the Future?
1. What is the FUEL for the behaviour? What are the factors in the child, the adults around or the environment that make the behaviour more likely to happen? (Include the way the child views the world, personality)
Child
3. What REGULATES What responses or reinforcers make the behaviour go on for longer? What shortens the behaviour or makes it go away?
Parents and other people
2. What IGNITES the behaviour? What lights up, triggers or ignites the behaviour?
You will find a completed FIRE wheel for Jamie in Handout 6.7. It isn’t always necessary to complete the FIRE wheel but we have found that it often helps to develop a clearer understanding of the child’s behaviour and the impact of other people’s behaviour. It can also often help to narrow down the goal; that is, what exactly you would like the child to be able to do.
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Handout 6.6 Completed template for Jamie
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3. What is the goal? In Jamie’s case his parents wanted to help him to: ·
tolerate going into disabled toilets again
·
tolerate the noise of hand driers in public toilets without using them
·
use driers in public toilets.
Remember to ask the question, ‘Will you or the child benefit, or both of you?’ You are preparing your child for the future as well as dealing with the present. Also check that the goal meets the SMART criteria: ·
Specific
·
Measurable
·
Achievable
·
Realistic
·
Time limited.
4. Plan strategies List ideas about how you might deal with the problem – no matter how silly they may seem. Be creative! The following can be applied to Jamie’s case: ·
Writing a Social Story™ might help him to imagine a different outcome particularly if the character uses the disabled toilet.
·
Use a desensitization approach to help him get used to the noise of driers.
·
Help him to feel more in control of other noises, e.g. switch the hand drier on and off under supervision.
See Handout 6.8 for more detail about these strategies. Choose a strategy (or combination of strategies) you think will most likely work. 5. Checking When you have a plan, write it down. Check the SMART criteria again and then check: ·
the benefits for everybody concerned
·
the costs – emotionally, in time and in resources.
Think about what might get in the way to stop it working.Find ways of dealing with these if possible before you begin.
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Handout 6.6 Completed template for Jamie
6. Put the plan into action! 7. Monitor progress If or when problems occur, don’t be disheartened; go through this process again, thinking about when, where and why it’s not working, and plan additional strategies.
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Handout 6.7
Handout 6.7 Completed FIRE wheel for Jamie
FIRE: A metaphor for thinking about behaviour
4. What EXTINGUISHES the behaviour? What finally brings the behaviour to an end?
What happens in 2, 3 and 4 of this cycle that is Fuel for the Future?
Behaviour set up by taking him to public toilet or place where there are diners
Better when taken from room
Child
Behaviour stops when out of situation
1. What is the FUEL for the behaviour? What are the factors in the child, the adults around or the environment that make the behaviour more likely to happen? (Include the way the child views the world, personality)
Difficulty communicating worries and needs (mindblindness) Can’t predict others’ behaviours Doesn’t get gist – e.g. of driers
Adults in a rush
Sensitive to noise – no control over it Can’t imagine any different Avoids toilets – scary places
Reduction in behaviour in disabled toilet Remove quickly if drier starts 3. What REGULATES the behaviour? What responses or reinforcers make the behaviour go on for longer? What shortens the behaviour or makes it go away?
No preparation Behaviour worse if toilet busy Used to quickly being in and out. Worse if can't
Sudden unpredictable noise of drier
Parents and other people
Copyright © Barry Wright and Chris Williams 2007
2. What IGNITES the behaviour? What lights up, triggers or ignites the behaviour?
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Handout 6.8
Handout 6.8 Ideas for strategies for Jamie Mindblindness and getting the gist: Jamie’s parents wrote a Social Story™ to help him understand about toilets and hand driers. This also helped him to imagine a different scenario and outcome. (Social Stories™ are covered in Session 9; you may want to give participants a very brief explanation of what these are at this point.) Jamie’s parents’ first goal was to help him to tolerate disabled toilets again. Their first Social Story™ was very simple and factual: My name is Jamie.I like going to town with my mum.Sometimes we go to the shop to buy stickers. Sometimes I need to use the toilet when we are in town. This is OK. My mum will take me to the special disabled toilet. It is very quiet there. When I have done a wee, I will wash my hands and dry them on a paper towel. Then we will walk out of the disabled toilet and go shopping. Shopping is fun!
The plan was to familiarize Jamie with these toilets before moving on to subsequent stories. Once his parents had worked on the other strategies described below, they added other scenarios, such as ‘Sometimes other people like to dry their hands using the hand drier.The noise is like my hairdryer at home.This is OK.’ Preoccupations and sensory experiences: to help him to get used to the noise of the hand drier, they decided to use a ‘desensitization’ approach. First they tape-recorded the noise of a hand drier. They also recorded other household noises and decided to make the desensitization into a guessing game.They kept the volume down very low at first, and gradually turned it up to full volume over the period of a few weeks. They also took some photographs of different driers in town and incorporated these into Social Stories™. Later,they planned to help him tolerate the noise in the actual situation by having one parent standing with him at the door of the public toilets and the other going in to switch on the drier. Social interaction and control: Jamie did not feel in control of the noise. His parents helped him to establish control of another noise by letting him switch a hairdryer on and off (under supervision).Eventually he was able to dry his own hair happily and was comfortable watching his mum dry her hair.
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Handout 6.9
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Handout 6.9 Sonia, aged 13, who has Asperger Syndrome Sonia,aged 13,has Asperger Syndrome.Her parents are struggling with her sudden angry outbursts. She is very argumentative and persistently asks her mother if she can do something despite being told repeatedly that she can’t (asking if she can stay up to watch a TV programme, for example). Her mother typically becomes more and more cross with her and eventually loses her temper. Sonia usually flies into a rage at this point, throwing things around the room. Her mum ends up sending her to her room and both of them feel angry and exhausted. Sonia’s temper was also affecting her sister. Yesterday Sonia was carefully sorting through her DVD collection. She was putting them in a special order according to production dates. Her younger sister, Jenny, who was sitting nearby, saw The Lion King and picked it up excitedly saying, ‘Let’s watch this now. We could ask Jo and Harry over to watch it with us.’ Sonia became annoyed with Jenny, shouting, ‘It’s mine!’ Jenny held on to it saying, ‘No. I want to watch it.’ In her rage Sonia bit Jenny hard on the arm. She pulled the DVD off her and went back to sorting out the DVDs. When their mother came in to find out what all the commotion was about she was appalled to see that Jenny’s arm was bruised and bleeding from a bite mark. Jenny cried, ‘Sonia bit me!’ Sonia screamed angrily, ‘She took my DVD!’ When her mother asked Sonia why she had done such a dreadful thing, she swore at her mother and started throwing the DVDs around the room. Her mother shouted to her to stop,and sent her to her room. She was told that as punishment she was not allowed to go to the cinema as planned that evening.Later when her mum went to talk to her about the incident she found Sonia watching TV. Sonia still blamed Jenny, insisting that if Jenny hadn’t taken the DVD she wouldn’t have bitten her. When her mother asked her what she could have done differently Sonia didn’t know. This was fairly typical of Sonia’s behaviour. She had great difficulty taking responsibility for her actions and seemed not to know how to deal with conflict situations.
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Handout 6.10
Handout 6.10 Completed template for Sonia 1.
What is the problem? Serious aggression (e.g. biting).
2.
Why does the child behave in this way at present?
Situations and settings Where does it happen? Where does it not happen? Who is around when it happens?
Someone interfering with what she is wanting to do. In unstructured time for sisters. Can be conflicts with sister when together. Mum tired and at end of tether. Sister may like to wind her up.
Triggers and timings When does it happen? What are the timings in relation to other things? When does it not happen? What is the trigger?
Conflict of need between sisters. Interrupted and prevented doing what she wanted.
Mindblindness Does the child realize they need to communicate their needs to someone? Can the child see others’ points of view, or understand the feelings and needs of others in this situation?
Doesn’t understand why mum gets cross, sister’s distress. Doesn’t realize asking for help will improve situation. Doesn’t understand sister’s needs. Younger sister may not understand Sonia’s needs/differences.
Getting the gist Do they understand the meaning of events and the context?
Doesn’t get the gist of sister’s activities with friends.
Imagination Does the child think imaginatively? Does this affect behaviour?
Doesn’t think imaginatively to find solution or compromise.
Preoccupations and sensory experiences Is the problem associated with sensory experiences or preoccupations?
Very preoccupied with DVDs.
Social interaction Does the child do this on their own or with others? How does this affect the behaviour?
Does things in isolation.
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Handout 6.10 Completed template for Sonia
Communication Is the problem associated with communication difficulties?
Does not effectively communicate needs. Does not explain to sister what she is doing.
Emotions Is it related to anxiety or the child’s temperament? Is there anything that might be upsetting the child (e.g. memories, illness, tiredness, boredom)?
Annoyance escalates quickly.
‘Sameness’ Is it to do with a need for routine or habits? Is there a need to be in control? Has there been a change of routine at home or at school?
Lacks flexibility of play. Liking for sameness (e.g. DVDs).
Responses How have others responded? Does something happen after the behaviour that is important? How does it affect the behaviour in the future?
Mum gives little explanation. Room may be associated with punishment.
Benefits What benefits happen for you? What benefits happen for your child? (Rack your brains – there usually are some)
TV in her room no deterrent. Sister may keep away in future.
Now underline (or mark with a highlighter pen) all those factors above that you think are important in your child’s behaviour.Put the key points into the blank FIRE wheel below. The inner ring is for things to do with the child; the outer ring is for things to do with parents or other people. Each quadrant deals with a different aspect of what has happened. The first one,in the upper-right corner,is what Fuels the behaviour;for example,what situations or settings the behaviour is more likely to happen in,and what has led up to the behaviour.What are the problems the child has to do with autism (like mindblindness or preoccupations) that make the behaviour more likely? The bottom-right corner is for the things that Ignite the behaviour: the triggers that happened just before. The bottom-left quadrant is for those things that Regulate the behaviour: things that the child or parent did at the time that made the behaviour get better or worse.The upper-left quadrant is what Extinguished (Ended) the behaviour. Finally, consider anything that has happened that adds Fuel for the future. What has happened that may make the behaviour more or less likely to happen again? Highlight or underline this. Copyright © Barry Wright and Chris Williams 2007
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Handout 6.10 Completed template for Sonia
FIRE: A metaphor for thinking about behaviour
4. What EXTINGUISHES the behaviour? What finally brings the behaviour to an end?
What happens in 2, 3 and 4 of this cycle that is Fuel for the Future?
1. What is the FUEL for the behaviour? What are the factors in the child, the adults around or the environment that make the behaviour more likely to happen? (Include the way the child views the world, personality)
Child
3. What REGULATES What responses or reinforcers make the behaviour go on for longer? What shortens the behaviour or makes it go away?
Parents and other people
2. What IGNITES the behaviour? What lights up, triggers or ignites the behaviour?
You will find a completed FIRE wheel for Sonia in Handout 6.11. It isn’t always necessary to complete the FIRE wheel but we have found that it often helps to develop a clearer understanding of the child’s behaviour and the impact of other people’s behaviour. It can also often help to narrow down the goal; that is, what exactly you would like the child to be able to do. 3. What is the goal? In Sonia’s case her parents wanted to help her to: ·
recognize when her mum was getting angry
·
develop other interests in addition to her DVDs.
Remember to ask the question, ‘Will you or the child benefit, or both of you?’ You are preparing your child for the future as well as dealing with the present.
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Handout 6.10 Completed template for Sonia
Also check that the goal meets the SMART criteria: ·
Specific
·
Measurable
·
Achievable
·
Realistic
·
Time limited.
4. Plan strategies List ideas about how you might deal with the problem – no matter how silly they may seem. Be creative! The following can be applied to Sonia’s case: ·
Use a yellow and red card system to help her to understand visually that her mum was getting cross.
·
Restrict the time she spends on her DVDs.
·
Take her to the cinema and theatre to help her develop other interests.
See Handout 6.12 for more detail about these strategies. Choose a strategy (or combination of strategies) you think will most likely work. 5. Checking When you have a plan, write it down. Check the SMART criteria again and then check: ·
the benefits for everybody concerned
·
the costs – emotionally, in time and in resources.
Think about what might get in the way to stop it working.Find ways of dealing with these if possible before you begin. 6. Put the plan into action! 7. Monitor progress If or when problems occur, don’t be disheartened; go through this process again, thinking about when, where and why it’s not working, and plan additional strategies.
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Handout 6.11
Handout 6.11 Completed FIRE wheel for Sonia
Fire: A metaphor for thinking about behaviour
4. What EXTINGUISHES the behaviour? What finally brings the behaviour to an end?
What happens in 2, 3 and 4 of this cycle that is Fuel for the Future?
Unstructured time. Mum tired. Activities with sister.
Mum gives little explanation. Room associated with punishment. Room has TV. Sister may keep away next time.
Child
Enjoys TV in room. Learns little from experience.
Likes sameness and routine. Preoccupations with DVDs. Lack of flexibility in play. Poor understanding of social needs of others
Sister doesn’t back off.
Doesn’t explain to sister. Does not understand sister’s needs or distress, or why mum getting cross. Sister may Finds compromise difficult. enjoy Doesn’t ask for help. Disproportionate response. the Poor reading of wind up. social clues. Can’t find imaginative solution.
3. What REGULATES the behaviour? What respones or reinforces make the behaviour go on for longer? What shortens the behaviour or makes it go away?
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1. What is the FUEL for the behaviour? What are the factors in the child, the adults around or the environment that make the behaviour more likely to happen? (Include the way the child views the world, personality)
Stopped from doing what she wants.
Parents and other people
Copyright © Barry Wright and Chris Williams 2007
Sister takes her things.
2. What IGNITES the behaviour? What lights up, triggers or ignites the behaviour?
Handout 6.12
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Handout 6.12 Ideas for strategies for Sonia Mindblindness and understanding emotions: Sonia and her mother agreed that part of the problem was that Sonia could not recognize anger in herself or in others very easily. In order to help her to understand when her mother was becoming angry,her mum agreed that she would tell Sonia how she was feeling and use a yellow and red card system. For example, when Sonia was repeatedly asking questions her mum would say something like ‘You have already asked me if you can play your computer game. I said not today. I said you can play with it after school tomorrow. I will get angry.’ If Sonia persisted, her mum would say, ‘Stop. You are making me angry. If you ask once more you will get a yellow card.’ If Sonia persists she is shown a yellow card.The yellow card is used as a warning.Sonia knows that if she asks again she will be shown a red card, which means that she is sent to her room. The plan was that this would help Sonia to recognize that both of them would probably be feeling very angry by this stage and to teach her that walking away (to her room) from such situations would help her not to fly into a rage. In order to help Sonia to understand emotions better, her mum also decided that they would watch their favourite TV programmes together and that she would comment on situations and the emotions of the characters. Preoccupations:on realizing that DVDs were beginning to take over a great deal of Sonia’s time and hence restrict her from developing other interests, her mother decided to help her limit the time she spent watching and sorting out her collection. Social interaction and social problem solving: Sonia’s mother wanted to help Sonia to consider different ways of interacting with her sister and other people. She decided to use the social problem-solving sheet below.
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Handout 6.12 Ideas for strategies for Sonia
1. What happened (describe situation that was bad)
2. What I did and why I did it
3. What other 4. What people did happened next
5. What good things came out of it
6. What bad things came out of it
Jenny took my I wanted my DVD DVD back. She wouldn’t give it to me so I bit her
Jenny cried. Mum told me off
Nothing
I got sent to bed. I wasn’t allowed to go to the cinema. I was angry. Mum was angry.
7. Alternative things I could have done
8. Good things that would have come from this
8. Bad things that would have come from this
A Not bitten her. Told mum
I wouldn’t have been told off
None
B Ask Jenny nicely instead of shouting at her
I wouldn’t have been sent to bed and I would have been able to go to the cinema
None
Mum sent me to bed
C D E F
First they filled it in regarding the incident described above, and later filled in other incidents that occurred.
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Handout 6.13
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Handout 6.13 Homework (Session 6) ·
Read Chapter 9 in How to Live with Autism and Asperger Syndrome: Practical Strategies for Parents and Professionals, by Chris Williams and Barry Wright (Jessica Kingsley Publishers, London).
·
Think about some of the things that your child does or doesn’t do that you would like to be different; try to narrow them down to one or two in particular that you would like to work on over the next few weeks; and make them as specific as possible.
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OHP 6.1
OHP 6.1 The FIRE wheel
FIRE: A metaphor for thinking about behaviour
4. What EXTINGUISHES the behaviour? What finally brings the behaviour to an end?
What happens in 2, 3 and 4 of this cycle that is Fuel for the Future?
1. What is the FUEL for the behaviour? What are the factors in the child, the adults around or the environment that make the behaviour more likely to happen? (Include the way the child views the world, personality)
Child
3. What REGULATES What responses or reinforcers make the behaviour go on for longer? What shortens the behaviour or makes it go away?
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Parents and other people
Copyright © Barry Wright and Chris Williams 2007
2. What IGNITES the behaviour? What lights up, triggers or ignites the behaviour?
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OHP 6.2
OHP 6.2 FIRE wheel example for Tom, a typically developing child
1. What is the FUEL for the behaviour? What are the factors in the child, the adults around or the environment that make the behaviour more likely to happen? (Include the way the child views the world, personality)
FIRE: A metaphor for thinking about behaviour 4. What EXTINGUISHES the behaviour? What finally brings the behaviour to an end?
What happens in 2, 3 and 4 of this cycle that is Fuel for the Future?
Tired, stressed and in a hurry
More powerful next time Child Makes behaviour more likely next time
3. What REGULATES the behaviour? What responses or reinforcers make the behaviour go on for longer? What shortens the behaviour or makes it go away?
Tantrum stops
Sees sweets, hungry. Takes sweets
Child happy
Angry
Mum says “No”
Gives sweets Parents and other people
Copyright © Barry Wright and Chris Williams 2007
2. What IGNITES the behaviour? What lights up, triggers or ignites the behaviour?
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SESSION 7
Exploring Individual Problems and Developing Strategies for Managing Behaviour (1)
Learning outcomes At the end of this session the participants will be able to: ·
identify one of their child’s behaviours that is challenging and that they would like to target with the support of the facilitators and additional therapists
·
demonstrate an ability to complete a behaviour management template and FIRE wheel in relation to the behaviour identified
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prepare a plan to implement in respect of the behaviour identified.
Session aims
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·
To help participants to link the theories discussed in previous sessions in order to help them make sense of their children’s behaviour
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To use this information to help them to change specific behaviours
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To introduce the therapists who will assist the facilitators in Sessions 7, 10 and 11
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For participants to leave the session with a clear plan to put into action
EXPLORING INDIVIDUAL PROBLEMS AND DEVELOPING STRATEGIES (1)
Facilitator preparation ·
Before this session, try to match individual facilitators to each child represented in the group
·
Provide facilitators with the following in advance:
blank behaviour management template (Handout 6.4)
Number of facilitators/therapists needed for this session: ·
Two to three facilitators, plus one therapist per child represented (appropriately qualified facilitators can fulfil the role of both facilitator and therapist); see page 13 for guidance on suitable professionals
Materials and handouts required for Session 7 Training materials required ·
Paper and pens
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Labels for the new facilitators/therapists to have a first-name badge
·
Labels for participants to have a first-name badge (if these are still needed)
·
Books on autism and Asperger Syndrome
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Flip chart
·
List of therapists matched with families, already prepared on a flip chart sheet
Handouts ·
Handout 7.1 Homework (Session 7)
Also provide each participant/therapist team with: ·
Handout 6.4 Behaviour management template (see page 154)
Suggested facilitator revision ·
All facilitators and therapists should have a sound understanding of this topic area before running or taking part in the session; for example, read Chapters 1–4 of How to Live with Autism and Asperger Syndrome: Practical Strategies for Parents and Professionals, by Chris Williams and Barry Wright (Jessica Kingsley Publishers, London); further recommended reading is listed below.
Davis, H., Day, C. and Bidmead, C. (2002) Working in Partnership with Parents. Oxford: Psychological Corporation.
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Notes to facilitator ·
Provide a list of therapists’ names and matched families on a flip chart sheet and encourage the participants to look at this soon after their arrival
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There is a lot to pack into this session; facilitators will need to ensure that participants keep to time and on task!
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If any participants have missed the previous session, it will be helpful for a member of the team to bring them up to speed.
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Give participants a brief reminder of the subject of the previous session: deciding which behaviour(s) to change; using behaviour management templates and the FIRE wheel; the FIRE metaphor.
Recap
Introducing the task Explain that, today, the session is to focus on identifying a behaviour that each participant wants to work on and then to complete a behaviour management template and FIRE wheel with their therapist, ideally by break time. Reassure participants that the therapists are very happy to provide feedback. Reaffirm the ground rules (see page 15), particularly in relation to confidentiality and respecting the views of others. Remind participants that they were asked at the end of the previous session to identify which behaviours they would like to tackle. Ask them to tell you what areas they would like to deal with and note these on the flip chart. They might include things such as: ·
sleep problems
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eating problems
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aggression
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tantrums
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problems with turn-taking
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social problems of various kinds
·
problems communicating with others
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problems communicating their needs.
Ask therapists and participants to pair up in different parts of the room, or in different rooms depending on the facilities, and begin the task. Before doing so, you may wish to have a short break to discuss with the therapists which areas they
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EXPLORING INDIVIDUAL PROBLEMS AND DEVELOPING STRATEGIES (1)
would like to work on with which families. Some families may choose to work together on a similar problem. Tell everyone that, at the break, therapists will be asked to leave for a short briefing session, and that, after the break, the families will be planning strategies to deal with the specific behaviour they have identified, and will, it is hoped, leave with a clear plan. Say that, ten minutes before the end of the session, you will request group feedback from either the family member or therapist for each child.
Therapists’ tasks The therapist should be asked to: ·
work in partnership with the participants, respecting their expertise as parents/carers, encouraging their ideas and, appropriately and sensitively, offering their own ideas
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ensure that participants do not feel threatened by this process, and are supported and empowered
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help the participants to work through the process, guiding them and supporting them as they use both the behaviour management template and the FIRE wheel
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support and encourage participants to generate ideas and the confidence to explore them
·
keep to time
·
feed back to the group should the participants prefer not to feed back themselves.
Having divided participants and therapists as appropriate, tell them how much time they have to complete the task and ask them to start work.
Break About 15 minutes. At the break, ask therapists to leave for a debrief. This offers a brief opportunity for them to seek the advice and support of each other about specific issues relating to the problem of the family they are working with. The participants take a break for refreshments.
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Continuation of task Ask participants and therapists to continue working with the behaviour management template (e.g. think about specific goal: planning strategies; checking). In the last 10–15 minutes ask the group to reconvene in order to provide feedback.
Group feedback Ask for very brief individual feedback. Remind participants that such plans often do not work out perfectly first time! Provide reassurance that they should not despair if the plan does not work as this is often part of the process. It is important to recognize that we always learn a great deal from thinking about where and why things went wrong. Advise the participants that the next session will concentrate on readjusting their plans if necessary.
Questions and answers Allow a few minutes at the end of the session for participants to put any questions they may have about problems with this topic or about topics discussed in the previous sessions.
Homework Distribute Handout 7.1, explaining that it includes details of their homework: put your plan into action and prepare to come back in two to three weeks’ time to give feedback. Also give out a spare copy of Handout 6.4 (Behaviour management template).
Debrief Offer around 30 minutes after this session to debrief therapists, as required. Close the session.
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Handout 7.1
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Handout 7.1 Homework (Session 7) ·
Put your plan into action and prepare to come back in two to three weeks’ time to give feedback.
Copyright © Barry Wright and Chris Williams 2007
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SESSION 8
Strategies for Managing Behaviour (1)
Learning outcome At the end of this session the participants will be able to: ·
list some useful strategies for addressing common behaviour problems in children with autism spectrum conditions (ASCs) or Asperger Syndrome.
Session aim ·
To help participants learn about different strategies for managing the behaviour of their children with an ASC
Number of facilitators needed for this session ·
Two to three
Materials and handouts required for Session 8 Training materials required
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·
Paper and pens
·
Labels for participants to have a first-name badge (if these are still needed)
·
Books on autism and Asperger Syndrome
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Flip chart
STRATEGIES FOR MANAGING BEHAVIOUR (1)
Handouts You will need to choose from the following handouts, depending on the specific strategies appropriate to the group: ·
Handout 8.1 Desensitization
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Handout 8.2 Taking control (problem solving)
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Handout 8.3 Positive reinforcement
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Handout 8.4 Balancing reinforcement
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Handout 8.5 Externalizing
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Handout 8.6 Distraction
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Handout 8.7 Making sure everybody is working together
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Handout 8.8 Time out
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Handout 8.9 Traffic lights
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Handout 8.10 Visual timetables
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Handout 8.11 First–then (or now–next)
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Handout 8.12 Diaries
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Handout 8.13 Social and emotional development
Suggested facilitator revision ·
Review the strategies represented on Handouts 8.1–8.13.
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You should have a sound understanding of this topic area before running the session; for example, read Chapters 10–19 of How to Live with Autism and Asperger Syndrome: Practical Strategies for Parents and Professionals, by Chris Williams and Barry Wright (Jessica Kingsley Publishers, London); further recommended reading and information is listed below.
SOCIAL SKILLS
Aarons, M. and Gittens, T. (1999) The Handbook of Autism: A Guide for Parents and Professionals, 2nd edn. London: Routledge. Csóti, M. (1999) People Skills for Young Adults. London: Jessica Kingsley Publishers. Csóti, M. (2001) Social Awareness Skills for Children. London: Jessica Kingsley Publishers. Davis, H., Day, C. and Bidmead, C. (2002) Working in Partnership with Parents. Oxford: Psychological Corporation. Gutstein, S. and Sheely, K. (2002) Relationship Development Intervention with Young Children: Social and Emotional Development Activities for Asperger Syndrome, Autism, PDD and NLD. London: Jessica Kingsley Publishers. Holliday Willey, L. (1999) Pretending to be Normal. London: Jessica Kingsley Publishers.
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SUPPORT FOR PARENTS AND CARERS Howlin, P., Baron-Cohen, S. and Hadwin, J. (1999) Teaching Children with Autism to Mind Read: A Practical Guide. Chichester: John Wiley & Sons. Johnson, M. (1998) Functional Language in the Classroom. Clinical Communication Materials, Manchester Metropolitan University (available from the MMU Commercial Office, tel: 0161 247 2535). Kiker Painter, K. (2006) Social Skills Groups for Children and Adolescents with Asperger’s Syndrome: A Step-by-step Program. London: Jessica Kingsley Publishers. Rubin, K. (2002) The Friendship Factor: Helping our Children Navigate their Social World – and Why it Matters for their Success and Happiness. New York: Viking. Spence, S.H. (1995) Skills Training: Enhancing Social Competence with Children and Adolescents. Windsor: NFER-Nelson.
CIRCLE OF FRIENDS
Broomfield, C. and Curry, M. (1998) NASEN, In-service Circle Time Manual for Teachers, Lichfield; see www.nasen.org.uk. Newton, C., Wilson, D. and Taylor, G. (1996) ‘Circle of friends: an inclusive approach to meeting emotional and behavioural needs.’ Educational Psychology in Practice 11, 41–48. Whitaker, P., Barratt, P., Joy, H., Potter, M. and Thomas, G. (1998) ‘Children with autism and peer group support: using circle of friends.’ British Journal of Special Education 25, 6–65.
SOCIAL USE OF LANGUAGE PROGRAMMES
Hanen programme – it takes two to talk: this programme provides training to groups of parents who have young children with delayed language development to help them play a key part in improving their children’s language development. Available from: Winslow Publishers Telford Road Bicester Oxon OX6 0TS Tel: 0845 921 1777 www.hanen.org Picture Exchange Communication System: see www.pecs.com. SULP (Social Use of Language Programme): SULP was devised by Wendy Rinaldi for children and adolescents (most recent edition revised in 2001). This is for professionals and takes them through an initial one-to-one assessment of the child, taking approximately 90 minutes, followed by individual teaching sessions lasting 45–60 minutes. Marketing and information from: NFER-Nelson Education Customer Services Unit 28 Bramble Road Techno Trading Centre Swindon Wiltshire SN2 8HB www.nfer-nelson.co.uk
SLEEPING
Douglas, J. and Richman, N. (1988) My Child Won’t Sleep. Harmondsworth: Penguin. Durrand, M.V. (1998) Sleep Better! A Guide to Improving Sleep for Children with Special Needs. Baltimore, MD: Brooks Publishing Company.
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STRATEGIES FOR MANAGING BEHAVIOUR (1) TOILETING
Wheeler, M. (1999) Toilet Training for Individuals with Autism and Related Disorders: A Comprehensive Guide for Parents amd Teachers. London: Jessica Kingsley Publishers.
SEXUALITY
Hénault, I. (2005) Asperger’s Syndrome and Sexuality from Adolescence through Adulthood. London: Jessica Kingsley Publishers.
C AREERS
Lundine, V. and Smith, C. (2006) Career Training and Personal Planning for Students with Autism Spectrum Disorders: A Practical Resource for Schools. London: Jessica Kingsley Publishers.
Recap ·
If any participants have missed the previous session, it will be helpful for a member of the team to bring them up to speed.
·
You should ask each participant for any feedback about the key strategies they put into place from the previous sessions. Ask each participant in turn (unless there is good reason to have this as a more general discussion). Encourage discussion about difficulties faced and discuss adjustments that could be tried. Allow plenty of time. Information from this will be used for discussions about strategies after the break.
Break About 15 minutes. Depending on how long the recap takes, a break can be taken now or you can move to the next section and take a break at an appropriate point later.
Introducing the theme: strategies for managing behaviour The whole of this session is devoted to teaching participants about specific strategies they can use with their child with an autism spectrum condition (ASC). You can choose from any of the following strategies to use in teaching this session and Session 10. (See Handouts 8.1–8.13 at the end of this session for more detail on the strategies covered.) In order to facilitate the participants in developing further strategies to use with their child with an ASC, provide short teaching sessions on specific strategies based on the expressed needs of the participants. This will vary from group to group, depending on the participants’ needs, but the following strategies are those most often requested:
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·
desensitization
·
taking control (problem solving)
·
positive reinforcement
·
balancing reinforcement
·
externalizing
·
distraction
·
working together
·
time out
·
traffic lights
·
visual timetables
·
first–then (or now–next)
·
diaries
·
social and emotional development
·
Social Stories™ (covered in Session 9).
Exercise/group discussion In this session the exercise is the group discussion. It should be brought to life by the real scenarios shared by participants and facilitators. In the previous session the therapists will have worked together with families to put a strategy or strategies in place. The feedback from each participant at the beginning of this session will have allowed others to hear how particular strategies might have been suggested for paticular scenarios. You can now use this opportunity to develop an understanding of these strategies by contextualizing them with participants’ own scenarios. You may also use previous examples of any strategy. This allows the session to come to life, rather than being a dry teaching session. Participants should also be encouraged to describe any other strategies that they have found useful in the context of any of the scenarios being presented.
Questions and answers Allow a few minutes at the end of the session for participants to put any questions they may have about problems with the strategies for managing behaviour, or about topics discussed in the previous sessions.
Preparation for the next session Inform participants that the next session will be a workshop on making Visual Guides and writing Social Stories™. You should be familiar with concept of writing Social Stories™; refresh your knowledge of this prior to Session 9 if necessary. In addition you may find it useful to watch the video Writing Social Stories with Carol Gray: A Video Workshop (Gray 2000). You may also find the following book useful in relation to Visual Guides: Savner, J.L. and Smith Myles, B. (2000) Making visual supports work in the home and community: strategies for individuals with autism and Asperger Syndrome. Shawnee Mission, Kansas: Autism Asperger Publishing Company.
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Homework Instruct the participants to read through the strategies handouts. Close the session.
Reference Gray, C. (2000) Writing Social Stories with Carol Gray: A Video Workshop. Arlington, TX: Future Horizons. Savner, J.L. and Smith Myles, B. (2000) Making visual supports work in the home and community: strategies for individuals with autism and Asperger Syndrome. Shawnee Mission, Kansas: Autism Asperger Publishing Company.
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Handout 8.1
Handout 8.1 Desensitization Sometimes behaviour is provoked by fear. For example, fear of the dark or animals or loud noises might cause a child to scream loudly, run away or freeze in absolute terror. Fear is of course a natural response to dangerous situations and our automatic responses, like running away, usually help us protect ourselves. A problem arises, however, when we develop fears of ordinary everyday things that we believe are dangerous or threatening in some way (due to previous experience and/or heightened sensitivity) when in fact they are not harmful but still have a huge negative impact on our lives. Desensitization is a technique that helps young people to cope with fear. It aims to break the connection between the thing they are frightened of and their automatic fearful responses. It works by breaking down the feared situations into very small steps, so that the child gradually learns to tolerate a little anxiety at a time and to gradually recognize that it’s not so scary after all. It gives the child the confidence to move on in steps until, before they know it, they are coping with the feared situation. It can be used for many different fearful situations. For example: ·
fear of spiders
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separation anxiety
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loud noises
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fear of sleeping alone
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social anxiety
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food
·
animals.
The best place to start with desensitization is to draw up a list of scary things associated with the thing the child is afraid of. If you are able to do so it can be useful to involve the child in this process. If not, you can do this yourself. Once the list is made, you will need to rate the items on it in order of scariness, as in the example below.
Example: spiders ·
10% – Looking at a drawing of a spider
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15% – Watching a cartoon with spiders in it
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20% – Looking at a photograph of a small spider
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30% – Looking at a photograph of a large spider
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40% – Watching a video of spiders
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Handout 8.1 Desensitization
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·
45% – Looking at a plastic spider in a jar in the same room
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60% – Looking at a dead spider in a jar in the same room
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80% – Looking at a live spider in a jar in the same room
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90% – Holding the jar with the live spider
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95% – Putting the jar over the spider
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100% – Putting the jar over the spider, sliding a piece of card under it and taking it outside
Gradually, you work down the list, overcoming the fear at each stage. It often helps to use charts to measure success and to build in rewards for each stage where success is achieved. You will need to go at your child’s own pace. This might mean that you will have to keep working on some steps for much longer than others. It also helps to try to find different ways to achieve the same step – maybe using different people to help and encourage, or different situations. Don’t forget to keep praising and giving rewards to your child.
Example: sleeping alone If your child cannot get to sleep without you lying with him until he is asleep you will need to help him to conquer this fear. Desensitization can help enormously. Decide what your eventual aim is, and starting from your current situation, make a list to help your child achieve this. For example: ·
going to sleep in bed with Mum lying next to you
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going to sleep with Mum sitting up on the bed with you lying down
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going to sleep with Mum sitting on the edge of the bed
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…Mum sitting on a chair next to the bed
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…Mum sitting on a chair pushed a little way away from the bed
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…on a chair by the bedroom door
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…on a chair outside the bedroom
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…at the top of the stairs
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…at the bottom of the stairs
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…in the living room.
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Handout 8.1 Desensitization
Example: loud noises (e.g. hand driers, flushing toilets or aircraft) A desensitization programme might include making an audio tape or video tape of the feared noise and turning the sound down as far as possible, to a point at which the child can tolerate it. You will need to sit with the child at first while they are watching or listening. Gradually turn the volume up over a period of weeks or, better still, allow the child to be in control of the volume. Repeated gentle exposure will gradually help him or her to tolerate the noise. Some parents have made a game of this by recording lots of different noises (mostly noises the child is not afraid of) and asking her or him to identify them.
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Handout 8.2
Handout 8.2 Taking control (problem solving) This strategy can be helpful in teaching children and young people how to problem solve. It is suitable for children or young people with Asperger Syndrome or high-functioning autism. When something bad has happened (e.g.the child got into trouble at school or did something at home to make his parents angry or upset), it can be useful to help them think about the different ways in which they could have acted and why the consequences then might have been better for the child.He will probably need a lot of help with this at first. It is really important to wait until both you as parents and the child or young person have recovered emotionally from the incident: you should all be very calm before you begin this. This strategy will help you look back at what happened and see if there were different ways of doing things that would have been better. Use the table below to help you. The following section explains how to use it. First, think of a time when something didn’t go as planned or went badly – for example, a conflict or a major problem situation. 1.
In the first box, write down what the situation was (draw a picture if you prefer).
2.
Now, what did you do and why did you do it? (How did you feel?)
3.
What did other people do?
4.
What happened next?
5.
What were the good things about what happened? (How did you feel?)
6.
What were the bad things about what happened? (How did you feel?)
7.
Think of things you could have done differently. Be inventive. What six other things could you have done instead? Write them down.
8.
Next to these, write what good things and what bad things would have happened if you had done each of these.
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Handout 8.2 Taking control (problem solving)
Now look at the list. Do you think any of the other options would be worth trying in the future? If so, choose one. Try this strategy for the next few weeks and, each time you try it, write down what happens in a diary or on a piece of paper.
1. What happened (describe situation that was bad)
2. What I did and why I did it
7. Alternative things I could have done
3. What other 4. What people did happened next
5. What good things came out of it
8. Good things that would have come from this
8. Bad things that would have come from this
A B C D E F
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6. What bad things came out of it
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Handout 8.2 Taking control (problem solving)
Example: Sonia – Asperger Syndrome (this refers to the example case discussed in Session 6)
1. What happened (describe situation that was bad)
2. What I did and why I did it
3. What other 4. What people did happened next
5. What good things came out of it
6. What bad things came out of it
Jenny took my I wanted my DVD DVD back. She wouldn’t give it to me so I bit her
Jenny cried. Mum told me off
Nothing
I got sent to bed. I wasn’t allowed to go to the cinema. I was angry. Mum was angry
7. Alternative things I could have done
8. Good things that would have come from this
8. Bad things that would have come from this
A Not bitten her. Told mum
I wouldn’t have been told off
None
B Ask Jenny nicely instead of shouting at her
I wouldn’t have been sent to bed and I would have been able to go to the cinema
None
Mum sent me to bed
C D E F
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Handout 8.3
Handout 8.3 Positive reinforcement Positive reinforcement aims to increase desired behaviour by rewarding it. Star charts, trips out, comics or anything else that the child finds rewarding can be used. The desired behaviour is made clear to the child so that they know exactly what is required of them in order to achieve the reward.
Example 1: Dominic Dominic was 12. He had Asperger Syndrome and couldn’t see the point of homework. He often refused to do it. He especially hated repeating work that he had done in class. His parents helped him design a chart that had steps going towards a reward chest. For each step he could put a star on the chart. Each star was awarded for completing each piece of homework. For each star he also received the reward of a certain amount of time on the computer. The reward chest represented a computer game that he wanted. He did well with this and his parents faded (gradually reduced and stopped) the rewards. Once in the habit of doing his homework he seemed to settle well to doing it (with the exception of those pieces he was asked to repeat!).
Example 2: Richard Richard was six and had autism. He had very little language. He didn’t like going to bed at night, but he did like having his neck rubbed. Dad and mum built this into his bedtime routine so that when he got into bed they would rub his neck for a few minutes. Richard would want it to go on and on, so his parents played a quiet tune that he liked.The tune lasted five minutes and they would rub his neck when he was in bed with the tune playing. When the tune finished they would kiss and cuddle him, say goodnight and leave.
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Handout 8.4
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Handout 8.4 Balancing reinforcement Reinforcement is a word that is sometimes used to describe those things that can make any behaviour more or less likely to happen again. This works for all of us. If we do something kind for someone and they are really pleased and grateful,we may be more likely to do it again for them than for someone who just criticizes what we have done. The praise is a reinforcer. Sometimes in any situation there may be things reinforcing more than one behaviour. For example, we may have to choose between going round to our best friend’s house for an evening of chat and a curry or going to see the new Harry Potter film with our kids. What are the things reinforcing each of these choices? There may be positive and negative things about each. This creates a balance between the two.Which way the balance tips and which we choose may depend on lots of things. How can we reinforce positive behaviours and reduce reinforcers for behaviours we don’t want?
Example A little girl used to eat mud in the garden. She would wait until her mother could see her from the kitchen window. Her mother would rush out with a flannel, wipe her mouth and give her a drink of orange juice.After a while it became a game.The little girl would run away and her mother would chase her. By accident the mother had ended up making the girl more likely to eat mud,so she set up an alternative where she placed a ball near the mud patch. When the little girl went to where the mud patch was, her mother said, ‘You better not run away with my ball.’ The little girl picked up the ball and ran away.They had a chasing game and then a biscuit and a drink together afterwards. This was just as much fun. Before long the little girl had forgotten about the mud.The ball was much more fun. The balance had been tipped very cleverly by the girl’s mother. Are there any balances you can tip?
Copyright © Barry Wright and Chris Williams 2007
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Handout 8.5
Handout 8.5 Externalizing Sometimes we want children to learn to do things or think things for themselves without us having to tell them.When a child walks towards the kerb of a busy road, the parent behind shouts: ‘No.’ The child freezes and the parent comes and says ‘It is dangerous; look at the cars.’ When the child hears this message as a small child they internalize it: they take it inside themselves and learn it. As they grow older, they hear a warning in their own heads when by the roadside. A ten-year-old child with autism (with good language) called Mary would interrupt regularly. She didn’t seem to be able to wait and didn’t seem aware when other people were already talking to each other. She was reminded hundreds of times but it didn’t really work. Her parents made a plan. Stage one: when Mary interrupted they would say clearly, ‘Mary. Please don’t interrupt.’ They became repetitive and always said the same thing. Stage two: after a while her parents said ‘Mary!’ but then said,‘What am I going to say to you?’ She would then invariably say,‘I don’t know.’ They would then go back a stage and say, ‘I’m going to say, “Please don’t interrupt.”’ After a few weeks, though, she began to say (much to their surprise), ‘Please don’t interrupt.’ They then said, ‘Well done!’ Stage three: at the next stage,instead of saying ‘Mary!’ they looked her in the eye and gave a particular hand signal (raising their hand).For the first few occasions she said ‘What?’ and they would go back a stage and say,‘What am I going to say to you?’ She would then tell them and they would praise her. This approach seemed to help Mary take on board in her own head what she was being told by the adults around her. More specifically, it probably helped her lay down the information in a place in her memory where she could access it in real-life situations. This was probably because the approach took place in real-life situations and was repetitive.
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Handout 8.6
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Handout 8.6 Distraction Distraction is a useful technique for diverting unwanted behaviours in all children. A great deal depends on knowing the best distracters for the individual child.Some of the most common are: ·
music
·
soft toys
·
books
·
films
·
foods
·
rough-and-tumble play
·
painting and drawing
·
baking
·
tickling
·
making funny faces
·
pointing out something of interest.
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Handout 8.7
Handout 8.7 Making sure everybody is working together Sometimes, what a child wants is different from what the parents want and that is different from what the grandparents want and that is different from what the doctor or psychologist wants and that is different from what the teacher wants.
For example, parents may take a child to the doctor because they are worried about his future, because he always wants to do things his own way. They may give the example of how he finds it difficult to do his maths homework the way the teacher wants.His teacher is worried that he won’t get the right marks in his exam because he never shows his working out. He just writes the right answer down. The teacher also worries that he is disruptive in class because he refuses to do things when asked. The teacher is worried about losing the respect of the class. The grandparents may not be worried at all about maths,so long as he is polite,and they find it hard that he can be rude when they introduce him to their friends. The child just wants to do his homework his way and to be left alone. If everyone in the child’s life has different beliefs about what they want and what should happen it may be difficult when the child is referred to the local psychologist. Everyone will have different goals. How do we get everyone working together and supporting each other and the child, and not criticizing each other? Criticism can be very undermining. There may be several things that can be done. ·
Openly discuss what the goals are and who they are for – are they for the child?
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Think about the child’s future. What is it that everyone wants for this child in the future? If the child wants to go on to university to study computer game design, then looking on the Internet to find out about courses may give the child the motivation they need to achieve the maths grade required to get on the course. It may help the teacher and the parents help the child, and may engage the grandparents to support this positive thinking.
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Handout 8.7 Making sure everybody is working together
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Make sure everybody is supporting each other. Some people use the word ‘empower’: are the beliefs and attitudes and goals empowering the child (helping them to grow in confidence and abilities)? Are they empowering the parents? Is everyone working together to help the child and those caring for the child? It is not just what you are doing that is important, it is how you are doing it.
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Handout 8.8
Handout 8.8 Time out The purpose of time out is to stop undesirable behaviour.When psychologists talk about time out, they really mean removing the child who is misbehaving from a situation where that behaviour is being rewarded in some way. (The reward or reinforcers are not always clear, but can include other children laughing or crying, or parents or teachers shouting at the child.) The goal of time out is not to punish the child but to remove him from a reinforcer that is unhelpfully making his difficult behaviour more likely. You will need a chair or a cushion or a set place for time out away from the general hustle and bustle of the rest of the family but (certainly for young children) not out of earshot or easy reach. If he is misbehaving ask him clearly to stop by making it clear that what he is doing is wrong (e.g.‘No hitting! Time out [cushion].’ Take him to the time out area and say ‘Stay there until I come to get you.’ Leave the child there for no more than one minute for every year of his age (e.g. five minutes for a five-year-old).If he gets up,quietly and calmly take him back.After the allotted period of time bring him back and carry on as normal. This can be a very effective strategy as it helps everyone to calm down quickly and teaches the child that certain behaviours will not be tolerated. It is best to stick to using this for one or two specific undesirable behaviours. This technique can be used on its own or, often more successfully, with other strategies such as traffic lights (see Handout 8.9).
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Handout 8.9
Handout 8.9 Traffic lights This is a system for helping children to follow and comply with specific social rules. It works by giving children a clear visual clue about whether or not they are complying with the rule. You can make a simple set of traffic lights using cardboard with red, amber and green colours painted on it, and a card to cover the appropriate colours – this can be attached using velcro.When the child is following the rule or instruction, they can be told that they are behaving well or following the rule. If they digress, you can alert the child by turning the traffic light to amber. Children on the autism spectrum seem to like this system because they are often fascinated by traffic lights. So, to summarize: ·
a child is given a goal that she understands and to which she agrees
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she is also given a hierarchy of ‘response costs’; this means that if she breaks a particular set of agreed rules, there will be consequences; these might be things like missing a television programme
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she is also given a hierarchy of rewards; these are written down
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the child is told that she is on green when she is achieving her goal (e.g. sitting at the table throughout a meal); this can be reinforced regularly by the parent saying to the child, ‘Well done, you are sitting at the table very well, you are still on green. If you carry that on until the end you will get 20 minutes on the computer’
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if the child gets down from the table, she is told she is on amber and is warned that she may go to red if she doesn’t come and sit down
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when a child goes from amber back to green by sitting down, she can be praised and told that her reward is still possible if she remains on green.
Reinforcement is usually built into the traffic light system. In our experience, when it is set up well, children don’t need to have the response costs applied very often once they understand the system. They may test it a couple of times, though, and it is important to stick to the rules if they do.
Example Gerald had started hitting out at his younger sister whenever arguments started and he became frustrated with her. His parents made a traffic light from coloured board and had it standing in the house. The lights were set to green. If his parents heard a disagreement escalating they would set the lights to amber saying ‘Official warning!’ The children were reminded that,if they didn’t calm down,the traffic light would turn to red and they would be sent to ‘time out’. When they calmed down, Copyright © Barry Wright and Chris Williams 2007
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Handout 8.9 Traffic lights
the traffic light would return to green. Gerald hated the traffic light turning to amber and quickly learnt to calm down so that it could be turned back to green again. Over a two-week period, the traffic lights never had to be turned to red. In the following two weeks the traffic lights also went to granny’s house with the children.One day they were fighting about TV programmes,ignored their warnings at amber and the lights had to be turned to red. The children were very upset. Granny quietly took them to ‘time out’ for three minutes. Although Gerald was upset he complied with the rule. Although everyone found this very difficult, it was an important learning experience. The children learnt that there were consequences to breaking the rule and that these consequences would be carried through. The adults learnt that the strategy was a useful one and that Gerald was able to cope with the consequences of his behaviour.
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Handout 8.10
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Handout 8.10 Visual timetables Visual timetables show children: ·
what is going to happen, and
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in what order.
They help children with autism: ·
see visually what is planned
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sequence events
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move from one activity to another
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understand their day better
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feel less anxious about their day.
Many families have told us how helpful they find visual timetables. They can be used in many different ways, both at home and at school. The main components would be: ·
a chart of some kind, with
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a list of events.
These events can be in pictures: ·
photographs of the child doing things
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photographs of certain places (e.g. grandma’s house, school playground)
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Picture Exchange Communication System (PECS) symbols (see www.pecs.com).
or in words: ·
lists of words or phrases.
Whether pictures or words are used will depend on the level of understanding of the child and their preferences. Each item is usually placed in a row (left to right) or a column (down the chart). We have seen them used on the wall, in ring binders, in diaries, on desks or on fridges.Many classrooms in units where children have autism use these (e.g.timetables on the wall for each child). Children usually have a way of showing that they have finished something and are moving on to the next thing. This might be by ticking things off or crossing them out on a list. It may be by removing a picture from a row of pictures or taking it off and putting it in a ‘Done’ or ‘Finished’ box or envelope. It may be by covering them up with flaps of card.
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Handout 8.10 Visual timetables
Visual timetables are similar to ‘first–then’ charts (see Handout 8.11).They can be used to spread out less popular activities between popular activities. They can also be used to help children engage in some social activities, as well as one-to-one work sessions or play. They help reduce anxiety, motivate children to finish things that are helpful to them (but perhaps less interesting for them) and help independence, since children can read their own charts and move from one activity to another.
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Handout 8.11
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Handout 8.11 First–then (or now–next) This is a very simple strategy, that helps children who: ·
have problems changing from one activity to another
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hate to do certain activities that are necessary for their well-being (e.g. brushing their teeth).
Usually, it pairs activities together so that a liked activity comes after a less well-liked activity. For example, ‘First brush teeth, then book.’ It is very simple but can work surprisingly well.
What do you need? Use a piece of A4 card or paper with a dividing line down the middle. On the left side the word First is written at the top and on the right side the word Then is written at the top. Other than this the card is blank, leaving space to place symbols on each side.The card would usually be a certain colour (e.g.yellow).Changing the colour of the card may confuse some children. To make it easier to stick things on the card you can use either Blu-Tack™ or sticky-backed velcro, which you can buy in hardware stores and fabric stores or some DIY shops. The symbols you put on the ‘First–then’ chart can be Picture Exchange Communication System (PECS) symbols (see www.pecs.com) or pictures of the child doing certain activities. Activities can be paired together. Usually you would make the more popular activity the second one. This helps the child: ·
learn to delay reward
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understand that activities that are less popular (usually the first one) can still be done
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move from one activity to another.
Children seem to like the simplicity of this strategy, and because things are written down they seem to be more content to do what is shown than being asked to do it. This may be because it is a visual stimulus rather than a verbal one.
How does it work? Use clear and straightforward language, and make sure it is simple and easy to understand. The first time you use it make sure that the first activity is straightforward and does not take too long. Show the child the chart and say the words clearly:‘First brush teeth, then book.’ Tailor the level of language to your knowledge Copyright © Barry Wright and Chris Williams 2007
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Handout 8.11 First–then (or now–next)
of the child.If the child resists or pulls the symbol off the chart,put the symbol back and repeat ‘First brush teeth, then book’. Help them to prepare to brush their teeth by getting things ready for them and helping them. If they refuse, do not give in and move to the book. This will confuse them. When they have brushed their teeth give positive comments, and move to reading the book.Some children like to remove the symbol from the chart when they have finished. This can be used for children of different ages and for different activities. Some parents call this a ‘Now–next’ chart, because of their child’s preference for these words. This is fine, but the commonest words seem to be ‘First–then’.
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Handout 8.12
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Handout 8.12 Diaries Diaries can be very useful tools when supporting children with autism and Asperger Syndrome. They can be helpful to the child or young person, their family and teachers.
Collecting information Sometimes information gathering can be very important. Diaries can be used to write down certain behaviours or to record certain things that happen during the day or night. They can: ·
help us map out when things are happening (e.g. what time of day, in what lessons)
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help us work out what is really going on (what the meaning of events or behaviours might be)
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be used as a baseline so that if different strategies are tried it is possible to see how they work (it is easy to forget how things were in the past).
An example of this is a diary to map out sleep (see below).
Helping the child understand the structure of their day Some children use diaries with their parents so that they know what they are doing the next day or the next week. Children with autism and Asperger Syndrome tend to like routine and structure. They like to know what is coming up in their day. Visual timetables (see Handout 8.10) offer one way to help children feel more comfortable with routine. Some older children prefer diaries, where the information is written down. Usually this involves a diary with a list or sequence of words or phrases written on the relevant page. An example of this in use would be where some parents use a diary in the evening to explain to their child what will be happening the next day.
Home–school communication Good communication between home and school is crucial for children. Children with autism or Asperger Syndrome may not volunteer information about what they have done at home to the teacher, or what they have done at school to a parent or carer. A diary can record events and help the adults in the child’s life prompt communication that is relevant to what the child has done that day. A diary also allows teachers or parents to write about progress and shared goals, and to record all manner of things that can be useful for the development of the child. Copyright © Barry Wright and Chris Williams 2007
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Handout 8.12 Diaries
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Printed with the kind permission of Nicola Clark and Barry Wright.
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Medication used each day and time given Dose: M_____ T_____ W_____ T_____ F_____ S_____ S_____ Time given: M_____ T_____ W_____ T_____ F_____ S_____ S_____
Week beginning (date): __________
Each small box is a 15-minute time period. If your child is asleep block out the box with a black pen. Please record on the chart when the bedtime routine started with a line in blue pen. The key shows these markings. Each day please put the number of capsules used and time given.
Sleep diary for [ID code] ______________
Sleep diary
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Key
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= Bedtime routine started
= Asleep
12 am
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Handout 8.13
Handout 8.13 Social and emotional development Children on the autism spectrum have many strengths and talents to be celebrated, but we know that their social and emotional development is likely to be delayed compared with other skills. However, we also know that children with autism and Asperger Syndrome can be helped to: ·
learn to play
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understand and control emotions
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learn social rules
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learn appropriate behaviour.
Strategies for engaging with young children ·
Use the child’s skills (e.g. number games)
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Use the child’s interests (e.g. look at car magazines together)
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Chasing and tickling games
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Promote shared play
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Some things can be learnt by rote (e.g. greetings)
Strategies for helping children to understand emotions ·
Explain emotions in everyday situations
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Make scrapbooks for different emotions by cutting out pictures from magazines
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Look at some of the books1 and computer software that are designed to help children understand emotions better
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Use ways of discussing emotions that are visual (e.g. Tony Attwood’s Asperger Syndrome: A Guide for Parents and Professionals [ Jessica Kingsley Publishers, London, 1998] suggests an ‘emotion thermometer’)
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Read stories with emotions and a range of facial expressions; talk about them
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Some older children can play emotion-focused games in groups
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Children can learn idioms by rote
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For example, Howlin, P., Baron Cohen, S. and Hadwin, J. (1999) Teaching Children with Autism to Mind Read: A Practical Guide London: John Wiley & Sons.
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Handout 8.13 Social and emotional development
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Computer games like the Story Book Weaver Delux (2004) CD-ROM and Safety Scavenger Hunt (StarPress Multimedia) can be helpful to many children
Ways to help play develop ·
Use routines and interests to start play and to engage with it
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Play and interaction through music
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Give information (e.g. explain real and pretend)
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Integrated play groups – inclusive play groups where all children are welcome whether or not they have any special requirements or learning difficulties; they are run by trained staff
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Joint play
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Assess the child’s stage of play skills:
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play on their own playing alongside others watching others allowing others into play tolerating changes to play routine
Work through the stages in turn; play alongside at first – be proactive but gently change things when time allows
Learning how to interact socially ·
Learning to listen (e.g. holding the conch)
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Time limits (timers)
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Teaching pointing and gesture
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Clear boundaries
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Preventing bad habits/thinking of the future
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Teaching social conventions
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Social Stories™
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Internalizing and remembering social rules
Dealing with things that get in the way of social development ·
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Reducing time spent on interests, preoccupations and compulsive behaviours where these interfere a lot with normal life Copyright © Barry Wright and Chris Williams 2007
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Handout 8.13 Social and emotional development
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Improve personal hygiene; encourage routine self-care
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Deal swiftly with bullying; liaise with the school
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Look at ways of reducing anxiety
Minimizing anxiety ·
A quiet, calm atmosphere
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Time out
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Going to a quiet place for a short time can be helpful; this is not a punishment and should never be used as such
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Routine reduces anxiety
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Visual timetables may help (see Handout 8.10)
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Aromatherapy
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Calming music
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Some sensory interests can be comforting
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Social Stories™
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Is it something to do with the environment (e.g. light, sound, smell)?
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Give warnings before an activity has to finish
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Help children cope with turn-taking and losing by playing games like snap and Connect 4
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SESSION 9
Visual Guides/Social Stories™ Workshop
Learning outcomes At the end of this session the participants will be able to: ·
understand the concepts involved in making Visual Guides and/or writing Social Stories™
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make Visual Guides and/or write brief Social Stories™ with support from facilitators.
Session aim ·
To provide a more intensive teaching session on a topic (e.g. how to make Visual Guides and/or write Social Stories™)
Number of facilitators/therapists needed for this session ·
Two to three (the other therapists who were involved in Session 7 are welcome to join this session and any other sessions)
Materials and handouts required for Session 9 Training materials required
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Paper and pens
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Labels for participants or any new facilitators/therapists to have a first-name badge (if these are still needed)
VISUAL GUIDES/SOCIAL STORIES™ WORKSHOP
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Books on autism and Asperger Syndrome
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Flip chart
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Video and TV set up ready to use
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Social Stories video (Gray (2000) – see suggested facilitator revision)
Handouts ·
Handout 9.1 Visual Guides
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Handout 9.2 Social Stories™
Suggested facilitator revision ·
You should be experienced in writing Social Stories™ and/or have viewed the video Writing Social Stories with Carol Gray. A Video Workshop; further recommended reading is listed below.
Carol Gray’s books and video are available from: The Gray Center for Social Learning and Understanding 2020 Raybrook, SE Suite 302 Grand Rapids MI 49546, USA Tel: 616-954-9747 www.thegraycenter.org/ Gray, C. (1994) Comic Strip Conversations. Arlington, TX: Future Horizons. Gray, C. (2000) Writing Social Stories with Carol Gray. A Video Workshop. Arlington, TX: Future Horizons. Gray, C. (2000) The New Social Stories Book, illustrated edn. Arlington, TX: Future Horizons. Gray, C. and Leigh White, A. (2002) My Social Stories Book. London: Jessica Kingsley Publishers. Howley, M. and Arnold, E. (2005) Revealing the Hidden Social Code: Social Stories™ for People with Autistic Spectrum Disorders (with a Foreword by Carol Gray). London: Jessica Kingsley Publishers.
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You should be familiar with using visual supports. Recommended reading includes:
Savner, J.L. and Smith Myles, B. (2000) Making visual supports work in the home and community: strategies for individuals with autism and Asperger Syndrome. Shawnee Mission, Kansas: Autism Asperger Publishing Company.
Note to facilitators There is a focus on individual problems in the next session and additional therapists will be needed, so this will need to be organized in good time.
Recap ·
If any participants have missed the previous session, it will be helpful for a member of the team to bring them up to speed.
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SUPPORT FOR PARENTS AND CARERS
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In the previous session there was discussion about a variety of different strategies. This is a good opportunity to discuss any questions parents or carers have about the strategies outlined in the handouts they read through for homework. (If questions arise about strategies not yet discussed in detail, these should be noted and the participants reminded that these topics will be covered in the following session.)
Introducing the workshop You should consider whether to focus on Visual Guides or Social Stories™ in this session. Much will depend on the needs of the group. Where children with difficulties at the more severe end of the autism spectrum are represented, it may be more useful to focus on Visual Guides. For those who are more able, Social Stories™ should form the focus of the session. The session can be tailored to the needs of the group in this way.
Visual Guides Some children with autism can be strong visual learners. Most children with autism are not strong at verbal learning. Many teachers, educators and families have found that visual strategies can be very good for helping children to learn tasks in class or within the home or the community. Examples of this are: ·
visual timetables (as described in Handout 8.10)
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Social Stories™ (website and book references given in the suggested facilitator revision section on page 213)
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Picture Exchange Communication System (see ww.pecs.com)
We describe here an allied strategy called a Visual Guide. A Visual Guide is something more than a visual timetable, but less complex than a Social Story™. In simple terms it is a set of pictures that guides a child through a sequence that they can ‘read’ with a carer or teacher and learn to follow. It is a set of instructions, but clearly and visually laid out in sequence. It usually involves real pictures of places and people that the child knows. Like Social Stories™, Visual Guides describe social situations (but in picture format). They should be positive. They should have a beginning, a middle and an end. The focus should be on the child or young person and aimed at their developmental level.
Social Stories™ We have experienced a great deal of success with Social Stories™ and find that participants appreciate having some more time to learn about writing them. Carol Gray has produced a video, which can be used very successfully in this session (full details on page 213). It gives participants (and therapists) the opportunity to practise writing stories of their own. 214
VISUAL GUIDES/SOCIAL STORIES™ WORKSHOP
There is an excellent review on how to write Social Stories™ starting on page 57 of Carol Gray’s book. Distribute copies of Handouts 9.1 and 9.2 to participants.
Exercise for Visual Guides Present an example of a Visual Guide. If this is not available then it can be described. An example would be a child with autism who runs across the road without understanding the consequences. A Visual Guide should show a sequence of pictures of events where real pictures of the child and the road are used. The sequence can be photographed and assembled by the carer or a teacher and show the child safely approaching and crossing the road and reaching their destination (e.g. the sweet shop). It may include pictures of a Pelican Crossing (the red and green man), etc. As an exercise put the participants into small groups (for example, three or four people in each) depending on group needs. Give them the task of designing a simple Visual Guide for a bedtime routine. You should provide them with a range of related and unrelated pictures for them to assemble in a visual guide. If these are not available then the groups can design their guides on a large flip chart (much like a storyboard from a cartoon). You should monitor the groups, providing encouragement, support and advice. The Visual Guides should be simple, understandable, in sequence and positive. Usually these take the form of a small booklet (e.g. folded A4 paper), although any format is acceptable within reason. Open a discussion about how the participants feel Visual Guides might be of benefit to their child. Before taking a break, ask participants to consider how they might use a Visual Guide for a specific issue in the life of their child.
Exercise for Social Stories™ It’s useful to show extracts from Carol Gray’s video for this session, particularly the exercise section which starts about one hour into the video. Page 16 of the workbook is the beginning of the workshop exercises on writing Social Stories™. There is a workshop activity sheet on page 41 which can be photocopied. Having done this exercise, open a discussion about how the participants feel a Social Story™ might be of benefit to their child. This can lead to an open discussion about the uses of Social Stories™. Before you take a break, ask participants to consider how they might use a Social Story™ for a specific issue in the life of their child.
Break About 15 minutes.
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SUPPORT FOR PARENTS AND CARERS
After the break, encourage parents to begin to write their own individual Social Story™ or help design their Visual Guide. This should be based on a real situation, which the family would like to work on with the help of a Social Story™ or Visual Guide. This workshop will take up the whole of the session.
Discussion There should be brief feedback about each person’s Social Story™ or Visual Guide.
Preparation for next week For session 10 tell the participants they will need to: ·
read their strategy handouts
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be prepared to discuss progress on the individual problems and strategies they have been working on since Session 7.
Close the session.
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Handout 9.1
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Handout 9.1 Visual Guides What is a Visual Guide? Some children with autism can be strong visual learners.Most children with autism are not strong at verbal learning. Many teachers, educators and families have found that visual strategies can be very good for helping children to learn tasks in class or within the home or the community. Examples of this are: ·
visual timetables
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Social Stories™
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Picture Exchange Communication System.
We describe here an allied strategy called a Visual Guide. A Visual Guide is something more than a visual timetable, but less complex than a Social Story™. In simple terms it is a set of pictures that guides a child through a sequence that they can ‘read’ with a carer or teacher and learn to follow. It is a set of instructions, but clearly and visually laid out in sequence. It usually involves real pictures of places and people that the child knows. Like Social Stories™, Visual Guides describe social situations (but in picture format). They should be positive. They should have a beginning, a middle and an end. The focus should be on the child or young person and aimed at their developmental level.The Visual Guides should be simple, understandable, in sequence and positive. Usually these take the form of a small booklet (e.g.folded A4 paper),although any format is acceptable within reason. An example would be a child with autism who runs across the road without understanding the consequences. A Visual Guide should show a sequence of pictures of events where real pictures of the child and the road are used. The sequence can be photographed, photocopied or drawn, and assembled by the carer or a teacher. For example, it could show the child safely approaching and crossing the road and reaching a destination (e.g.a shop). It may include pictures of a Pelican Crossing (the red and green man) or any other key parts of the journey.
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Handout 9.2
Handout 9.2 Social Stories™ What is a Social Story™? Carol Gray started writing stories for young people with an autism spectrum condition (ASC) in order to help them to ‘read’ social situations. If a child was struggling with a situation, Gray wrote a simple short story specifically for her, explaining what would happen in that specific situation and what she was expected to do.One boy was very troublesome in his PE class.Gray went to observe him and realized that he could not make any sense of what was going on, and hence ran about on his own instead of joining in with the games. The story she wrote for him made the rules of the game very clear and told him what to do. He read the story every day until it was PE day at school again. After only one week, his behaviour changed and he successfully joined in with the game described in the story. Gray noted that some stories were more successful than others and when she studied the most successful ones carefully she noted that there was a sort of ‘recipe’ that could be used. She has written several books and hundreds of Social Stories™ to help children and young people, and also to teach parents and carers how to write their own (see the ‘References’ section at the end of this handout). The Gray Center provides a description of a Social Story™ on its own website. A Social Story™ describes a situation, skill, or concept in terms of relevant social cues, perspectives, and common responses in a specifically defined style and format. The goal of a Social Story™ is to share accurate social information in a patient and reassuring manner that is easily understood by its audience.Half of all Social Stories™ developed should affirm something that an individual does well. Although the goal of a Story™ should never be to change the individual’s behavior, that individual’s improved understanding of events and expectations may lead to more effective responses. (Copyright © Carol Gray, www.thegraycenter.org/socialstories.cfm)
How do I write a Social Story™? There are several books, a video and DVDs explaining how to write Social Stories™ and giving examples (e.g. the video workshop, Writing Social Stories with Carol Gray, listed in the ‘References’ section below).
Some brief guidelines 1. Write the story from your understanding of the child (and other people’s understanding if appropriate), i.e. at their developmental level, and based on their interests and current skills. 218
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Handout 9.2 Social Stories™
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2. Be clear about the goal you want to achieve. 3. If it’s a topic you are unsure about, find out more before you begin writing. 4. At least 50 per cent of the content should congratulate the child or refer to things the child already does well. 5. Write it in the first person, using the child’s name for younger children (e.g. ‘Tom is good at writing stories’); for adolescents, writing in the third person works better (i.e. not referring directly to the young person by name). 6. Keep it positive, avoid negatives. For example, write ‘Tommy will try to hold mum’s hand when they walk across the road’ rather than ‘Tommy must not run across the road’. 7. Keep it short. 8. If it’s a complex issue, divide it up into several stories. 9. Keep it literal. 10. Cover only one issue. 11. Keep it honest. 12. Use language the child or young person (and their parents) understands and feels comfortable with. 13. Use words such as ‘another’ rather than ‘new’ or ‘different’, and ‘move’ rather than ‘change’. 14. Read the story to the child or young person once or twice a day (or encourage them to read it to themselves). When the skill has developed, gradually reduce the number of times you read the story to once a week, once a month, and so on.
References Gray, C. (1994) Comic Strip Conversations. Arlington, TX: Future Horizons. Gray, C. (2000) Writing Social Stories with Carol Gray. A Video Workshop. Arlington, TX: Future Horizons. Gray, C. (2000) The New Social Stories Book, illustrated edn. Arlington, TX: Future Horizons. Gray, C. and Leigh White, A. (2002) My Social Stories Book. London: Jessica Kingsley Publishers. Howley, M. and Arnold, E. (2005) Revealing the Hidden Social Code: Social Stories™ for People with Autistic Spectrum Disorders (with a Foreword by Carol Gray). London: Jessica Kingsley Publishers. Carol Gray’s books and video are available from: The Gray Center for Social Learning and Understanding, 2020 Raybrook SE, Suite 302, Grand Rapids, MI 49546, USA, Tel: 616-954-9747, www.thegraycenter.org/carol_gray.htm Savner, J.L. and Smith Myles, B. (2000) Making visual supports work in the home and community: strategies for individuals with autism and Asperger Syndrome. Shawnee Mission, Kansas: Autism Asperger Publishing Company.
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SESSION 10
Exploring Individual Problems and Developing Strategies (2) and Strategies for Managing Behaviour (2)
Learning outcomes At the end of this session the participants will be able to: ·
describe the positive benefits of attempting to implement an action plan to tackle one of their child’s behaviours
·
demonstrate an ability to readjust strategies, based on their experience of implementing a plan to tackle one of their child’s behaviours
·
list some useful strategies for addressing common behaviour problems.
Session aims ·
To continue the task from Session 7, exploring individual problems and developing strategies
·
To help participants learn how to readjust strategies
·
To provide participants with more detailed information about some of the most useful strategies
Number of facilitators/therapists needed for this session ·
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Two to three facilitators, plus one therapist per child represented (appropriately qualified facilitators); see page for guidance on suitable professionals
INDIVIDUAL PROBLEMS AND STRATEGIES (2) / MANAGING BEHAVIOUR (2)
Materials and handouts required for Session 10 Training materials required ·
Paper and pens
·
Labels for the new facilitators/therapists to have a first-name badge
·
Labels for participants to have a first-name badge (if these are still needed)
·
Books on autism and Asperger Syndrome
·
Flip chart
Handouts ·
For this session, you will need the necessary handouts from Sessions 6 and 7, plus Handouts 8.1–8.13, copies of which can be found at the end of Session 8; you will need to select appropriate handouts from these depending on the specific strategies appropriate to the group. You may choose to add your own handouts to these if you wish
·
Handout 10.1 Post-course evaluation questionnaire
·
Handout 10.2 Course satisfaction questionnaire
Suggested facilitator revision ·
You should have a sound understanding of this topic area before running this session; for example, read Chapters 10–19 of How to Live with Autism and Asperger Syndrome: Practical Strategies for Parents and Professionals, by Chris Williams and Barry Wright (Jessica Kingsley Publishers, London).
·
Review the strategies on Handouts 8.1–8.13.
·
You may also find it helpful to carry out some background reading of the books listed at the beginning of Session 8 on page 183.
·
If any participants have missed the previous session, it will be helpful for a member of the team to bring them up to speed.
·
There should be a brief recap about Visual Guides and/or Social Stories™ from the previous session.
Recap
Introducing the task This session is a continuation of Session 7, which was devoted to helping parents use a template to make sense of any of their child’s current difficulties. This then led 221
SUPPORT FOR PARENTS AND CARERS
to them developing strategies. This session allows participants to review progress, and most importantly to recognize that even the best-laid plans will need to be adjusted.
Exercise Ask the therapists to continue working with the same families they worked with in Session 7. Advise participants that the focus for this week’s session is exploring how successful the plan they developed in Session 7 has been. They will be looking at what worked successfully and what did not work so well. The therapists are asked to help the families to back-track as necessary, and work out with them where the plan was less successful and why. The therapists should then help the participants to re-evaluate and adjust their plans. Some families may choose to extend their goals and others to work on another issue, particularly if the first plan has been successful. The therapists should be encouraged to congratulate, praise and reinforce the participants for their hard work and successes.
Group discussion After approximately 30 minutes, request group feedback. This part of the session should take about 15 minutes. You may wish to list any important points on the flip chart.
Break About 15 minutes. The break can be held here or before the group discussion if necessary.
Further teaching of strategies The remainder of this session is devoted to teaching about specific strategies (not previously covered) for parents to use with their children. These should be based around your particular skills and can usually be expected to include a range of strategies outlined in the handouts. You can choose from any of these strategies for this teaching session, but not those covered before, and will depend on the stated needs of the group. You can once again use this opportunity to develop an understanding of these strategies by contextualizing them with participants’ own scenarios. You may also use previous examples of your own. This allows the session to come to life, rather than being a dry teaching session. The following strategies are more often requested and are covered in the Session 8 handouts (and in the book): 222
INDIVIDUAL PROBLEMS AND STRATEGIES (2) / MANAGING BEHAVIOUR (2)
·
desensitization
·
taking control (problem solving)
·
positive reinforcement
·
balancing reinforcement
·
externalizing
·
distraction
·
working together
·
time out
·
traffic lights
·
visual timetables
·
first–then (or now–next)
·
diaries
·
social and emotional development
·
Visual Guides/Social Stories™ (covered in Session 9).
Encourage the participants to describe any other strategies they have found useful in the context of the scenarios being presented.
Preparation for the next session Explain to participants that the next session is the final session. It will also be an opportunity to ask any final unanswered questions. ·
Hand out the packs of evaluation questionnaires and ask the participants to complete them and bring them back to the last session (evaluation packs should include: Post-course evaluation questionnaire (Handout 10.1); Course satisfaction questionnaire (Handout 10.2); and the Developmental Behaviour Checklist (DBC-P), details of which can be found on page 16).
·
There is usually a brief celebration at the end of the group. Invite participants to contribute some food or drink to a buffet-style meal.
·
Participant certificates are prepared (see Appendix 4).
As some participants are keen to keep in touch with each other, it may be useful to facilitate this by asking those participants who would like to exchange addresses or telephone numbers to write them on a list which will be prepared for the next session. Close the session.
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Handout 10.1
Handout 10.1 Post-course evaluation questionnaire
Name of child ________________ Your name ___________________ Date _______________________ Please put a cross on the Likert scale at the point that best describes your current feelings or understanding: Not at all
E.g. I understand how my child sees the world
Very much
X
__________________________________________________________________________ Not at all
Very much
Not at all
Very much
Not at all
Very much
Not at all
Very much
Not at all
Very much
Not at all
Very much
Not at all
Very much
Not at all
Very much
Not at all
Very much
1. I understand how my child sees the world 2. I understand what mindblindness is 3. I understand why my child has problems with time perception 4. I understand why my child has difficulties with eye contact 5. I understand why my child has difficulties with facial expression 6. I understand why my child has difficulties with pointing things out to other people 7. I understand why my child has difficulties with understanding the emotions of others 8. I understand why my child has difficulties understanding what to do in difficult social situations 9. I understand why my child has difficulties with sharing and turn-taking
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Handout 10.1 Post-course evaluation questionnaire
10. I understand why my child has difficulties offering comfort when others are hurt 11. I understand why my child has difficulties using imagination in play 12. I understand why my child has difficulties having a to-and-fro conversation (e.g. listening as well as talking and building a conversation) 13. I understand why my child has difficulties with unusual preoccupations 14. I understand why my child has very intense interests 15. I understand why my child has intense repeated routines or habits 16. I understand why my child has unusual movement (e.g. hands) 17. I understand why my child has unusual sensory interests 18. I understand how to make sense of my child’s behaviour 19. I have lots of ideas about how to manage my child’s behaviour 20. I understand how to plan strategies to manage my child’s behaviour 21. I feel confident about putting my ideas and behavioural strategies into action 22. I feel competent in dealing with my child’s difficult demands
Not at all
ü Very much
Not at all
Very much
Not at all
Very much
Not at all
Very much
Not at all
Very much
Not at all
Very much
Not at all
Very much
Not at all
Very much
Not at all
Very much
Not at all
Very much
Not at all
Very much
Not at all
Very much
Not at all
Very much
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Handout 10.2
Handout 10.2 Course satisfaction questionnaire We would be grateful if you would take a few moments to complete the questionnaire. Its purpose is to help us to evaluate the course so that it can be developed and improved. 1.
2.
3.
How useful was the course? Very useful
c
Useful
c
Quite useful
c
Not useful
c
Not at all useful
c
To what extent did it increase your understanding of the autism spectrum and related disorders? A great deal
c
Moderately
c
Somewhat
c
Very little
c
Not at all
c
How satisfied are you with the course? Very satisfied
c
Satisfied
c
Quite satisfied
c
Dissatisfied
c
Very dissatisfied
c
4.
Have you any suggestions about how the course could be improved?
5.
In your opinion, what were the best aspects of the course
6.
In your opinion, what were the worst aspects of the course?
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Handout 10.2 Course satisfaction questionnaire
7.
ü
To what extent would you recommend the course to other parents? Highly recommend
c
Recommend
c
Not sure
c
Unlikely to recommend
c
Would not recommend
c
8.
What have you learned in the course that you will find useful in understanding your child and any behavioural difficulties?
9.
Do you have any comments about the course?
Thank you for completing the questionnaire!
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SESSION 11
Consolidation, Questions and Party
Learning outcomes At the end of this session the participants will be able to: ·
describe the key messages they have learnt from the course
·
identify other areas of their child’s behaviour that they might look to address in the future using methods learnt in the course
·
list some the most useful exercises undertaken during the course.
Session aims ·
To consolidate learning from the course
·
To complete and end the therapists’ intervention
·
To collect feedback forms
·
To celebrate (with the awarding of certificates and a party if desired)
Number of facilitators/therapists needed for this session ·
All facilitators and therapists who have attended the course
Materials and handouts required for Session 11 Training materials required
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·
Paper and pens
·
Labels for therapists or participants to have a first-name badge (if needed)
CONSOLIDATION, QUESTIONS AND PARTY
·
Books on autism and Asperger Syndrome
·
Flip chart (and sufficient paper to list details of the five themes covered in the course)
·
Certificates of course completion (see Appendix 4 for examples)
·
Spare evaluation forms (Handouts 10.1 and 10.2)
·
Party food!
Handouts ·
Handout 11.1 Participant contact details (a blank template that you can use to list the participants’ contact details that you collected earlier)
·
Handout 11.2 Further reading for parents and children
Suggested facilitator revision ·
Review all the course sessions
·
You may also find the books listed at the beginning of Session 8 helpful for background reading (page 183)
Introduction Collect participants’ completed evaluation forms (Handouts 10.1 and 10.2). Explain that the format of this session is different to that of the previous sessions. There will be a recap session, revisiting the themes covered on the course, and feedback will be invited from the participants on what they feel they have learnt. The participants will then have individual sessions with their therapists to discuss how their plans are working out, and to develop them further or think about tackling something new. There will then be a brief feedback session. There will not be a refreshment break this time, but a late snack/party time instead.
Recap This should take about 30 minutes in total, and should cover the following areas. Ask the participants about the main themes covered in the course they recall. Write these up on the flip chart, using one sheet for each: mindblindness; getting the gist; language and communication; preoccupations, sensory interests and repetitive behaviours; imagination, time perception, planning and memory. Ask participants about the main points covered in each session. Encourage them to recall exercises done in the sessions.
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Ask participants to identify the most useful parts of the sessions on managing behaviours. Tell them that the group will now divide up so that participants can spend time with their individual therapists.
Individual session with therapists This should take about 30 minutes in total. Ask the therapists to have a final session with the families to discuss how their plans are working out and to develop them further or to think about tackling something new. After about half an hour, ask the group to reconvene to provide group feedback from their individual sessions. This should take about 15 minutes and you may wish to write any useful points on the flip chart. After this:
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·
provide an opportunity for participants to ask any final questions
·
offer a ‘refresher session’ about three months later. These have proved very worthwhile
·
present the course completion certificates to the participants
·
facilitate the exchange of contact details using Handout 11.1
·
distribute Handout 11.2, explaining that it contains details of further reading that participants may find useful
·
thank all participants and therapists for their contribution and encourage the group to relax and enjoy the party!
Handout 11.1
ü
Handout 11.1 Participant contact details Name
Contact details
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Handout 11.2
Handout 11.2 Further reading for parents and children Parents and carers Attwood, T. (1998) Asperger Syndrome: A Guide for Parents and Professionals. London: Jessica Kingsley Publishers. Attwood, T. (2006) The Complete Guide to Asperger Syndrome. London: Jessica Kingsley Publishers. Baron-Cohen, S. and Bolton, P. (1993) Autism: The Facts. Oxford: Oxford Paperbacks. Boyd, B. (2003) Parenting a Child with Asperger Syndrome: 200 Tips and Strategies. London: Jessica Kingsley Publishers. Harris, S.L. (1994) Topics in Autism. Siblings of Children with Autism: A Guide for Families. Bethesda, MD: Woodbine House. Howlin, P. (1998) Children with Autism and Asperger Syndrome: A Guide for Practitioners and Carers. New York: Wiley. Ives, M. and Munro, N. (2002) Caring for a Child with Autism. London: Jessica Kingsley Publishers. Richman, S. (2006) Encouraging Appropriate Behavior for Children on the Autism Spectrum: Frequently Asked Questions. London: Jessica Kingsley Publishers. Sicile-Kira, C. and Grandin, T. (2003) Autism Spectrum Disorders: The Complete Guide. London: Vermilion. Williams, C. and Wright, B. (2004) How to Live with Autism and Asperger Syndrome: Practical Strategies for Parents and Professionals. London: Jessica Kingsley Publishers.
Books for young people with ASD Bleach, F. (2002) Everybody is Different. Kansas: Autism Asperger Publishing Company, PO Box 23173, Shawnee Mission, KS 66283-0173. Hall, K. (2001) Asperger Syndrome, the Universe and Everything. London: Jessica Kingsley Publishers. Hoopman, K. (2001) Of Mice and Aliens: An Asperger Adventure. London: Jessica Kingsley Publishers. Jackson, L. (2002) Freaks, Geeks and Asperger Syndrome: A User Guide to Adolescence. London: Jessica Kingsley Publishers. Mesibov, G. and Faherty, C. (2000) Asperger’s: What Does it Mean to Me? A Workbook Explaining Self Awareness and Life Lessons to the Child or Youth with High Functioning Autism or Aspergers. Arlington, TX: Future Horizons. Romanowski, B., Bashe, P.R., Kirby, B.L. and Attwood, T. (2001) The OASIS Guide to Asperger Syndrome: Advice, Support, Insight, and Inspiration. New York: Crown Publishers. Welton, J. and Telford, J. (2003) Can I Tell You About Asperger Syndrome? A Guide for Friends and Family. London: Jessica Kingsley Publishers.
Siblings: books that help siblings up to age seven to understand ASCs Amenta, C. (1993) Russell is Extra Special: A Booklet about Autism for Children. New York: Magination Press. Davies, J. (1993) Children with Autism: A Booklet for Brothers and Sisters. Nottingham: University of Nottingham, Child Development Research Unit. Edwards, B. and Armitage, D. (1999) My Brother Sammy. London: Bloomsbury. Gorrod, L. (1997) My Brother is Different. London: National Autistic Society. Lears, L. (1998) Ian’s Walk: A Story About Autism. Morton Grove, IL: Albert Whitman.
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Handout 11.2 Further reading for parents and children
ü
Siblings: books that help siblings aged 7–13 to understand ASCs Bleach, F. (2001) Everybody is Different: A Book for Young People who have Brothers or Sisters with Autism. London: National Autistic Society. Campbell, K. (2000) My Brother has Autism. Hertford: Hertfordshire County Council. Harris, S.L. (1994) Topics in Autism. Siblings of Children with Autism: A Guide for Families. Bethesda, MD: Woodbine House. Hoopman, K. (2000) Blue Bottle Mystery: An Asperger Adventure. London: Jessica Kingsley Publishers. Spilsbury, L. (2002) What Does it Mean to Have Autism? Oxford: Heinemann Educational Books.
Stories for children with emotions and a range of facial expressions Dale, P. (1999) Big Brother, Little Brother. London: Walker Books. The Mr Men and Little Miss books by Roger Hargreaves. Manchester: Mr Men World International Publishing Ltd. Hughes, S. (1983) Alfie Gives a Hand. New York: Lothrop, Lee & Shepard Books. Lewis, P. (2001) I’ll Always Love You. London: Little Tiger Press. Mckee, D. (1996) Not now Bernard. New York: Random House. Oxford Reading Tree books from Oxford University Press, www.oup.co.literacy/oxed/primary/ort Sendak, M. (1988) Where the Wild Things Are. New York: HarperCollins. Wiesner, D. (1991) Tuesday. New York: Clarion Books.
Software and websites Understanding facial expressions (software) Available from: Gaining Face Team Asperger 324 East Spring Street Appleton, WI 54991, USA www.ccoder.com/GainingFace Cambridge University/Baron-Cohen, S. (2004) Mind Reading: The Interactive Guide to Emotions. London: Jessica Kingsley Publishers. Available from: Jessica Kingsley Publishers 116 Pentonville Road London N1 9JB Tel: 0207 833 2307 Fax: 0207 833 2917 www.jkp.com Understanding facial expressions (videos) I CAN (1995) See What I Mean (VHS video). London: I CAN. Available from: ICAN 4 Dyers Building London, EC1N 2QP Tel: 0870 010 4066 Email:
[email protected] www.ican.org.uk Copyright © Barry Wright and Chris Williams 2007
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Handout 11.2 Further reading for parents and children CDs that help children learn empathy and imagination skills Why do We Have To? and Safety Scavenger Hunt are CDs for use on a PC (Alphabet Pals Series). World Books Inc. (LRDC), Chicago, Illinois, 1994. Toy Story 2 Activity Centre CD (which links with the film). Disney/Pixar, 2002. Storybook Weaver. CD Deluxe, 2004, www.riverdeep.net Websites that explain idioms The Idiom Connection: www.geocities.com/Athens/Aegean/6720/ Self-study idiom site: http://a4esl.org/q/h/idioms.html A list of idiom websites: www.utexas.edu/student/esl/links/idioms.html Other helpful websites Thinking Publications Inc. A US company supplying educational games, books, videos and software for teachers: www.thinkingpublications.com Future Horizons Inc., a US publisher of books on autism, pervasive developmental disorders (PDDs), etc.: www.futurehorizons-autism.com LD-Online (US), Follow the links via ‘LD in-depth’ then ‘social skills’. Gives information about how parents may help young people to enhance their social skills and how to tolerate annoyances: www.ldonline.org OASIS (Online Asperger Syndrome Information & Support) has a large section devoted to social skills, including Circle of Friends and Skillstreaming: www.udel.edu/bkirby/asperger Tony Attwood’s site is full of helpful advice and papers, resources and books covering Asperger Syndrome and social skills: www.tonyattwood.com.au EarlyBird, the National Autistic Society’s own training programme for parents of pre-school children with ASCs. It teaches parents skills they will need to understand and analyse their child’s autism, facilitate communication, as well as understand, pre-empt and, if necessary, modify their behaviour: www.nas.org.uk/earlybird Mind reading, www.jkp.com: www.nfer-nelson.co.uk The Hesley Group website gives details of the Hesley Group residential special schools and colleges for young people with special needs: www.hesleygroup.co.uk OAASIS (Office for Advice, Assistance, Support and Information on Special needs) can send you its prospectuses; it produces a wide range of free information sheets and other publications (for which a charge is made). Send for a list and order form or check the website: www.oaasis.co.uk The InterACT Centre is an education facility for adults and young people with autism and Asperger Syndrome. It runs many courses (including social skills and interaction techniques) at: Westcott Crescent London W7 1PD, UK Tel: 0208 575 0046 www.theinteractcentre.com Educational website www.dotolearn.com has pictures you can download free of charge. You can order a huge selection of others for a small price. http://dir.yahoo.com/business_and_economy/shopping_and_services/children/software lists some of the most popular children’s educational computer software.
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APPENDIX 1A
Sample Leaflet for Professionals, to Encourage Parent/Carer Participation
Information Leaflet for Professionals Intervention and Support for Parents and Carers of Children and Young People on the Autism Spectrum This is an 11-week course for parents and carers. It runs twice a year. One course usually starts in October and the other in March. We have separate courses depending on the child or young person’s diagnosis – one for autism and one for Asperger Syndrome or high-functioning autism. There are 11 sessions in each course. We strongly advise parents and carers to try to attend all sessions if possible as each session informs the next, and they may find the course difficult to follow if sessions are missed. Each session lasts for two hours with a break for refreshments in the middle. Coffee and tea are available in the room 15 minutes before the session starts. We usually start at 12.30 pm and finish at 2.30 pm. Parents will be given supplementary materials throughout the sessions.
Referral Any parent or carer of a child or young person with a diagnosis of autism, Asperger Syndrome or atypical autism may be referred to the group. We also welcome grandparents. It is useful to have a referral letter with details of the child’s developmental history and his or her family history, as well as diagnostic assessment. We will write to the parents/carers inviting them to the next course approximately two months before it is due to begin.
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Overview COURSE AIMS
By the end of the course, participants will be able to: ·
describe how children on the autism spectrum perceive the world
·
identify why children on the autism spectrum have some of the symptoms they display
·
apply this knowledge and understanding in addressing specific behaviours with their own child
·
use a systematic approach to think through the reasons for any behaviour, and be able to formulate plans to support the child to develop behaviours that are healthy for his or her development.
STRUCTURE OF THE COURSE
The course comprises 11 two-hourly sessions. Each follows the broad format described below. ·
Recap of the themes introduced in the previous week and discussion of any issues related to the theme or reading (15 minutes).
·
Theme introduction: each week, we introduce a new topic related to autism and Asperger Syndrome, with demonstrations and case examples (30 minutes).
·
Break (15 minutes).
·
Theme exercises: each session includes one or two group exercises for parents/carers, which are fun and serve to reinforce the key messages of the week’s theme (45 minutes).
·
Group discussion: in this part of the session, parents/carers are invited to consider the ways in which the topic relates to their children, give examples and ask questions (15 minutes).
HOMEWORK/READING GUIDELINES
Each week a small amount of reading is recommended and parents are asked to watch out at home for any examples of behaviour related to the topic discussed that week.
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APPENDIX 1B
Sample Leaflet for Parents/Carers, to Encourage Participation
Information Leaflet for Parents and Carers Intervention and Support for Parents and Carers of Children and Young People on the Autism Spectrum This is an 11-week course for parents and carers. It runs twice a year. One course usually starts in October and the other in March. We have separate courses depending on the child or young person’s diagnosis – one for autism and one for Asperger Syndrome or high-functioning autism. There are 11 sessions in each course. We strongly advise parents and carers to try to attend all sessions if possible as each session informs the next, and it may be difficult to catch up if sessions are missed. Each session lasts for two hours with a break for refreshments in the middle. Coffee and tea are available in the room 15 minutes before the session starts. We usually start at 12.30 pm and finish at 2.30 pm. You will be given supplementary materials throughout the sessions. We will let you know about the course approximately two weeks before it is due to begin, and give you a list of dates for the sessions.
Overview COURSE AIMS
By the end of the course, you will be able to: ·
describe how children on the autism spectrum perceive the world
·
identify why children on the autism spectrum have some of the symptoms they display
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SUPPORT FOR PARENTS AND CARERS
·
apply this knowledge and understanding in addressing specific behaviours with your own child
·
use a systematic approach to think through the reasons for any behaviour, and be able to formulate plans to support your child to develop behaviours that are healthy for his or her development.
STRUCTURE OF THE COURSE
The course comprises 11 two-hourly sessions. Each follows the broad format described below. ·
Recap of the themes introduced in the previous week and discussion of any issues related to the theme or reading (15 minutes).
·
Theme introduction: each week, we introduce a new topic related to autism and Asperger Syndrome, with demonstrations and case examples (30 minutes).
·
Break (15 minutes).
·
Theme exercises: each session includes one or two group exercises for parents/carers, which are fun and serve to reinforce the key messages of the week’s theme (45 minutes).
·
Group discussion: in this part of the session, you are invited to consider the ways the topic relates to your child, give examples and ask questions (15 minutes).
HOMEWORK/READING GUIDELINES
Each week a small amount of reading is recommended and you are asked to watch out at home for any examples of behaviour related to the topic discussed that week.
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APPENDIX 2
Sample Formal Letter Inviting Parents to Attend
[Address] Dear _______ Intervention and Support for Parents and Carers of Children and Young People on the Autism Spectrum We are planning to run a support group for the parents and carers of children who have a diagnosis on the autism spectrum. The aims are to discuss issues such as: ·
what autism really is
·
how to attempt to improve communication with autistic children
·
ways of managing behaviour in autistic children.
It is hoped that the group will offer a good way of meeting other parents/carers and up to six sets of parents/carers will be present.
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SUPPORT FOR PARENTS AND CARERS
The group is due to meet at ________ on the following dates (add dates and times of all 11 sessions of your own course, as applicable): At least one parent/carer from each family would be asked to try and attend all of these dates, as the group will follow a natural progression. To know whether families would be interested in this or able to attend we are asking if you could return the form below by [day, date, year] in the enclosed stamped addressed envelope. Yours sincerely _________ [Enc. Stamped Addressed Envelope]
" Re: Intervention and Support for Parents and Carers of Children and Young People on the Autism Spectrum I / we are hoping to attend the group on [insert day and time] Name/s of people attending ___________________________________________ ___________________________________________ Signed ___________________________________________ ___________________________________________ Telephone number ____________________________
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APPENDIX 3
Pre-course Evaluation Questionnaire
Name of child _________________ Your name ____________________ Date ________________________ Please put a cross on the Likert scale at the point that best describes your current feelings or understanding: E.g. I understand how my child sees the world
Not at all
Very much
X
__________________________________________________________________________ 1. I understand how my child sees the world
Not at all
Very much
2. I understand what mindblindness is
Not at all
Very much
3. I understand why my child has problems with time perception
Not at all
Very much
4. I understand why my child has difficulties with eye contact
Not at all
Very much
5. I understand why my child has difficulties with facial expression
Not at all
Very much
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SUPPORT FOR PARENTS AND CARERS 6. I understand why my child has difficulties with pointing things out to other people
Not at all
Very much
Not at all
Very much
Not at all
Very much
Not at all
Very much
Not at all
Very much
Not at all
Very much
Not at all
Very much
13. I understand why my child has difficulties with unusual preoccupations
Not at all
Very much
14. I understand why my child has very intense interests
Not at all
Very much
Not at all
Very much
16. I understand why my child has unusual movement (e.g. hands)
Not at all
Very much
17. I understand why my child has unusual sensory interests
Not at all
Very much
18. I understand how to make sense of my child’s behaviour
Not at all
Very much
19. I have lots of ideas about how to manage my child’s behaviour
Not at all
7. I understand why my child has difficulties with understanding the emotions of others 8. I understand why my child has difficulties understanding what to do in difficult social situations 9. I understand why my child has difficulties with sharing and turn-taking 10. I understand why my child has difficulties offering comfort when others are hurt 11. I understand why my child has difficulties using imagination in play 12. I understand why my child has difficulties having a to-and-fro conversation (e.g. listening as well as talking and building a conversation)
15. I understand why my child has intense repeated routines or habits
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Copyright © Barry Wright and Chris Williams 2007
Very much
PRE-COURSE EVALUATION QUESTIONNAIRE 20. I understand how to plan strategies to manage my child’s behaviour 21. I feel confident about putting my ideas and behavioural strategies into action 22. I feel competent in dealing with my child’s difficult demands
ü
Not at all
Very much
Not at all
Very much
Not at all
Very much
Copyright © Barry Wright and Chris Williams 2007
243
APPENDIX 4
Sample Course Completion Certificates
244
Copyright © Barry Wright and Chris Williams 2007
Course facilitator(s)
Date
Course title
to certify that they have completed to satisfaction
Name
is hereby granted to
Certificate of Completion
Company Name
245
ü
ü
246
Course facilitator(s)
Copyright © Barry Wright and Chris Williams 2007
Intervention and Support Programme for Parents and Carers of Children on the Autism Spectrum
Date
was successfully completed by
(Autism Spectrum Conditions – Enhancing Nurture and Development)
The ASCEND Programme
APPENDIX 5
Course Evaluation Results
Course feedback and evaluation form At the end of each course parents were asked to complete a brief evaluation form. Forty-five questionnaires (88%) were analysed over five courses out of a possible fifty-on. This is more than the number of children represented, as in some cases both parents attended, and sometimes grandparents. How useful was the course/workshop? ·
91% said either ‘very useful’ or ‘useful’
·
9% said ‘quite useful’.
To what extent did it increase your understanding of ASD? ·
93% answered either ‘a great deal’ or ‘moderately’
·
6% answered ‘somewhat’.
How satisfied were you with the course content? ·
96% said ‘very satisfied’ or ‘satisfied’
·
4% said quite ‘satisfied’.
Would you recommend the course to other parents? ·
100% said they would highly recommend or recommend the course.
247
SUPPORT FOR PARENTS AND CARERS
Parents comments and suggestions Over the last 5 years, the course has developed as a result of the very helpful suggestions made by parents. For example, a Social Stories™ workshop and other practical workshops are now included.Also,parents are encouraged to invite their children, teachers and teaching assistants to any parts of the course. The courses were split according to the children’s diagnoses at the suggestion of parents from earlier courses. A recap session after 6 months is also now available following parents’ requests. Parents’ views on the best aspects of the course Many parents commented on how much they enjoyed and learnt from the exercises used to help them understand the theories covered, such as ‘mindblindness’ and ‘getting the gist’. Almost all commented on the value of meeting and learning from other parents. The teaching of practical strategies was also highy valued. Parents’ views on the worst aspects of the course The common themes here were largely about time; many feeling that two hours per session was enough and some, (a minority), found that holding the sessions in the middle of the day made it difficult for them to attend. A frequent comment was about some parents tending to dominate discussions. An issue covering both the best aspects and worst aspects of the course was about flexibility or side tracking. Many parents enjoyed the opportunity to ask questions and consider issues they brought to the sessions (e.g. the emotional impact of having a child with ASD, the effect on siblings, grandparents etc.). Others found this a little irritating, leaving insufficient time for the designated topic of the session. What parents learnt from the course Some quotes from feedback forms: ‘I think I have more respect for the condition and am more tolerant of his behaviour now I have more insight into why it happens.’ ‘I feel very confident in understanding my child’s behaviour and putting strategies into place.’ ‘I feel as if you have chucked me a life line. Things were really bad before we started and now things are getting so much better.’ ‘Seeing the world from his point of view – not just my own.’ ‘I came away feeling very positive about the future potential of our child – the course encouraged a very up-beat view.’
248
COURSE EVALUATION RESULTS
Likert scales At the beginning of the course parents and carers were asked to complete Likert scales (visual analogue scales with lines representing whether they agreed with certain statements very much at one end or not at all at the other). They could mark any point on this 100mm line. We asked them what they currently knew about autism and how well they felt able to face the challenges facing them as parents. Thirty-eight parents or carers filled this in at the beginning and the end of the course. The following table shows the mean difference in scores. Overwhelmingly parents felt that they knew a great deal more at the end of the course than at the beginning. All of these results were very highly statistically significant (p<0.001). They had greatly improved understanding of key concepts of autism such as ‘mindblindness’.In particular,participants felt much better able to both understand and manage the behaviour of their children with autism spectrum disorders. We believe that building the confidence of families in this way is a crucial success. We are currently evaluating whether this translates into improved outcomes for the children as well.
249
0
5
10
15
25
Range –100 to +100
20
30
Figure A5.1 Participant improvements over five courses (n=38) using before and after rated visual analogue Likert scales (100mm)
–100
Competent dealing with child’s difficult demands
Understand how my child sees the world
Understand mindblindness
Understand problems with time perception
Understand difficulties with eye contact
Understand difficulties with facial expression
Understand difficulties using pointing and gesture
Understand difficulties understanding the emotions of others
Understand difficulties in social situations
Understand difficulties sharing and taking turns
Understand difficulties offering comfort to others
Understand difficulties using imagination
Understand difficulties having a conversation
Understand difficulties with unusual preoccupations
Understand why my child has intense interests
Understand why my child has intense routines
Understand why my child has unusual movements
Understand why my child has unusual sensory interests
Understand how to make sense of my child’s behaviour
Have lots of ideas about how to manage behaviour
Understand how to plan strategies to manage behaviour
Feel confident about ideas and putting strategies into action
35
40
45
100
List of figures, handouts and OHPs
Figures 1.1
The four domains of autism
22
1.2
Autism correlates
22
1.3
Symptoms
23
1.4
The autism spectrum: an example
24
1.5
The Sally–Anne test (after Wimmer and Perner 1983)
26
1.6
The differences in the range of understanding of theory of mind in children with and without autism
28
The different rates of the development of theory of mind for four different young people
29
1.7 5.1
The development of imagination
114
5.2
The differences in the development of imaginative abilities in children with autism and children without autism
116
The different rates of development of imaginative skills for four different young people
116
5.3
A5.1 Participant improvements over five courses (n=38) using before and after rated visual analogue Likert scales (100mm)
250
Handouts 1.1
Breakdown of sessions
35
1.2
A brief explanation: what is autism?
36–40
1.3
Session 1 summary: mindblindness
41–43
1.4
Sally–Anne test of theory of mind
44
1.5
Gorilla exercise
1.6
Homework (Session 1)
2.1
Session 2 summary: getting the gist
2.2
Homework (Session 2)
3.1
Session 3 summary: language and communication
82–83
3.2
Twins
84–86
3.3
Twins analysis sheet
87–88
45–46 47 65–67 68
251
SUPPORT FOR PARENTS AND CARERS
3.4
Idioms
89
3.5
Homework (Session 3)
90
4.1
Session 4 summary: preoccupations/sensory interests, and repetitive behaviours
104–106
4.2
Exercise: sensory preoccupation
107
4.3
Cards to photocopy and cut out for use in the exercise on understanding preoccupations
108
4.4
Homework (Session 4)
109
5.1
Session 5 summary: imagination, time perception, planning and memory
5.2
Rules for group 1 for use in exercise
127
5.3
Rules for group 2 for use in exercise
128
5.4
Homework (Session 5)
129
6.1
The influence of context on behaviour: Tom and his mum
151
6.2
The FIRE wheel
152
6.3
FIRE wheel example for Tom, a typically developing child
153
6.4
Behaviour management template
6.5
Jamie, aged seven, who has autism
6.6
Completed template for Jamie
6.7
Completed FIRE wheel for Jamie
163
6.8
Ideas for strategies for Jamie
164
6.9
Sonia, aged 13, who has Asperger Syndrome
165
6.10 Completed template for Sonia 6.11 Completed FIRE wheel for Sonia 6.12 Ideas for strategies for Sonia
123–126
154–156 157 158–162
166–169 170 171–172
6.13 Homework (Session 6)
173
7.1
Homework (Session 7)
181
8.1
Desensitization
188–190
8.2
Taking control (problem solving)
191–193
8.3
Positive reinforcement
194
8.4
Balancing reinforcement
195
8.5
Externalizing
196
8.6
Distraction
197
8.7
Making sure everybody is working together
8.8
Time out
8.9
Traffic lights
201–202
8.10 Visual timetables
203–204
8.11 First–then (or now–next)
205–206
8.12 Diaries
207–208
252
198–199 200
LIST OF FIGURES, HANDOUTS AND OHPS
8.13 Social and emotional development 9.1
Visual Guides
9.2
Social Stories™
209–211 217 218–220
10.1 Post-course evaluation questionnaire
224–225
10.2 Course satisfaction questionnaire
226–227
11.1 Participant contact details (a blank template that you can use to list the participants’ contact details that you collected earlier) 11.2 Further reading for parents and children
231 232–234
OHPs 1.1
The four domains of autism
48
1.2
Autism correlates
49
1.3
Symptoms
50
1.4
The autism spectrum: an example
51
1.5
The Sally–Anne test
52
1.6
The differences in the range of theory of understanding of mind in children with and without autism
53
The different rates of the development of theory of mind for four different young people
54
1.7 5.1
The development of imagination
130
5.2
The differences in the development of imaginative abilities in children with autism and children without autism
131
The different rates of development of imaginative skills for four different young people
132
6.1
The FIRE wheel
174
6.2
FIRE wheel example for Tom, a typically developing child
175
5.3
253
