Providing Practical Support for People With Autism Spectrum Disorders: Supported Living in the Community

196 Pages·2008·3.4 MB·English

PROVIDING
PRACTICAL SUPPORT
FOR PEOPLE
WITH AUTISM SPECTRUM
DISORDER
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PROVIDING
PRACTICAL SUPPORT
FOR PEOPLE
WITH AUTISM SPECTRUM
DISORDER
Supported Living in the Community
DENISE EDWARDS
Foreword by E. Veronica Bliss
Jessica Kingsley Publishers
London and Philadelphia
First published in 2008
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 © Denise Edwards 2008
Foreword copyright © E. Veronica Bliss 2008
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, Saffron House, 6–10 Kirby Street, London EC1N 8TS. 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
Edwards, Denise.
Providing practical support for people with autism spectrum disorder : supported living in
the community / Denise Edwards ; foreword by E. Veronica Bliss.
p. cm.
ISBN 978-1-84310-577-0 (pb : alk. paper) 1. Autism--Patients--Care. 2.
Autism--Patients--Services for. I. Title.
RC553.A88E38 2008
362.196'85882--dc22
2007044319
British Library Cataloguing in Publication Data
A CIP catalogue record for this book is available from the British Library
ISBN 978 1 84310 577 0
ISBN pdf eBook 978 1 84642 787 9
Printed and bound in Great Britain by
Athenaeum Press, Gateshead, Tyne and Wear
Contents
ACKNOWLEDGEMENTS . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 8
FOREWORD by E. Veronica Bliss . . . . . . . . . . . . . . . . . . . . . . . . . 9
INTRODUCTION . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 11
Notes regarding definitions and language . . . . . . . . . . . . 14
Note regarding case studies . . . . . . . . . . . . . . . . . . . . . . 14
Part One – The Need for Support
Chapter 1 Philosophy and Principles . . . . . . . . . . . . . . . . . . . . . 17
Chapter 2 Understanding the Nature of Autism Spectrum
Disorder . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 22
Case study 2.1: Matt . . . . . . . . . . . . . . . . . . . . . . . . . . . . 26
Part Two – The Nuts and Bolts of Support
Chapter 3 Key Areas for Support . . . . . . . . . . . . . . . . . . . . . . . . 31
Chapter 4 Organization . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 35
Instilling order . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 35
Managing change . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 39
Forward planning . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 42
Chapter 5 Interpretation . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 47
Establishing connections . . . . . . . . . . . . . . . . . . . . . . . . 47
Maintaining the connections . . . . . . . . . . . . . . . . . . . . . 50
Chapter 6 Communication . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 52
Difficulties . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 52
Clear communication . . . . . . . . . . . . . . . . . . . . . . . . . . 54
Listening . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 56
Case study 6.1: Harry . . . . . . . . . . . . . . . . . . . . . . . . . . . . 61
More than words . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 63
In all its complexity . . . . . . . . . . . . . . . . . . . . . . . . . . . 65
Chapter 7 Social Interaction . . . . . . . . . . . . . . . . . . . . . . . . . . . . 67
Difference . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 67
Coping strategies . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 70
Sex . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 74
Anti-social behaviour . . . . . . . . . . . . . . . . . . . . . . . . . . 78
Chapter 8 Health Matters . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 84
Physical . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 84
Case study 8.1: Mark . . . . . . . . . . . . . . . . . . . . . . . . . . . . 86
Psychological stress . . . . . . . . . . . . . . . . . . . . . . . . . . . 90
Psychological obsessions . . . . . . . . . . . . . . . . . . . . . . . . 95
Part Three – Implementation and Management of Support
Chapter 9 Managing Support . . . . . . . . . . . . . . . . . . . . . . . . . . . 101
Planning . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 101
The specialist . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 103
Chapter 10 Care Plan . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 105
Design . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 105
Implementation . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 114
Chapter 11 Ethics . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 119
Chapter 12 Family Support . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 122
Caring for the family/carers . . . . . . . . . . . . . . . . . . . . . 122
Working together . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 125
Case study 12.1: Darren . . . . . . . . . . . . . . . . . . . . . . . . . . 129
Part Four – Support Within Society
Chapter 13 Networks . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 135
Chapter 14 Disclosure . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 137
Chapter 15 Education . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 140
An integrated society . . . . . . . . . . . . . . . . . . . . . . . . . . 140
Opportunities in further and higher education . . . . . . . . 143
Chapter 16 Employment . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 146
Finding work . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 146
Keeping work . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 148
Case study 16.1: Emma . . . . . . . . . . . . . . . . . . . . . . . . . . . 150
Chapter 17 The Criminal Justice System . . . . . . . . . . . . . . . . . . . 153
Victims of crime . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 153
Arrest . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 155
Case study 17.1: John . . . . . . . . . . . . . . . . . . . . . . . . . . . . 160
Chapter 18 Accessing Services and Benefits . . . . . . . . . . . . . . . . . 164
Part Five – The Future
Chapter 19 A Vision for Effective Support . . . . . . . . . . . . . . . . . . 171
Surgery . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 171
Outreach services . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 172
Emergency support . . . . . . . . . . . . . . . . . . . . . . . . . . . . 172
Support in the home . . . . . . . . . . . . . . . . . . . . . . . . . . . 172
Residential support . . . . . . . . . . . . . . . . . . . . . . . . . . . . 173
High-level support . . . . . . . . . . . . . . . . . . . . . . . . . . . . 174
Support groups . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 175
Chapter 20 Conclusion . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 177
APPENDIX 1 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 180
APPENDIX 2 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 185
REFERENCES . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 186
FURTHER READING . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 187
USEFUL ORGANIZATIONS . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 189
INDEX . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 190
Acknowledgements
Together with many people I know who have ASD and their families, I
would like to thank the psychologist E. Veronica (Vicky) Bliss. She has
worked for many years on a professional and voluntary basis building a high
level of expertise in this field. I speak for many when I say I do not know
how I would have come through this without her.