Asperger Syndrome, Adolescence, and Identity: Looking Beyond the Label

175 Pages·2004·0.67 MB·English

by  Latika Vasil

A S P E R G E R S Y N D R O M E ,
A D O L E S C E N C E ,
A N D I D E N T I T Y
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ISBN 1 84310 742 2
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Foreword by Lorna Wing
ISBN 1 85302 577 1
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ISBN 1 84310 201 3
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A S P E R G E R S Y N D R O M E ,
A D O L E S C E N C E ,
A N D I D E N T I T Y
Looking Beyond the Label
Harvey Molloy and Latika Vasil
Jessica Kingsley Publishers
London and Philadelphia
All rights reserved. No part ofthis 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 ofthis publication) without the written
permission ofthe copyright owner except in accordance with the provisions ofthe
Copyright, Designs and Patents Act 1988 or under the terms ofa 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 ofthis
publication should be addressed to the publisher.
Warning: The doing ofan unauthorised act in relation to a copyright work may result in
both a civil claim for damages and criminal prosecution.
The right ofHarvey Molloy and Latika Vasil to be identified as authors ofthis work has
been asserted by them in accordance with the Copyright, Designs and Patents Act 1988.
First published in the United Kingdom in 2004
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 © Harvey Molloy and Latika Vasil 2004
Library ofCongress Cataloging in Publication Data
Molloy, Harvey, 1961-
Aspergersyndrome,adolescence,andidentity:lookingbeyondthelabel/HarveyMolloy
and Latika Vasil.
p. cm.
Includes bibliographical references and index.
ISBN 1-84310-126-2 (pbk.)
1. Asperger’s syndrome—Patients—Case studies. 2. Teenagers with mental disabili-
ties—Casestudies.3. Teenagers—Mentalhealth—Casestudies. I.Vasil,Latika,1962-II.
Title.
RJ506.A9M65 2004
616.85’88—dc22
2004005034
British Library Cataloguing in Publication Data
A CIP catalogue record for this book is available from the British Library
ISBN-13: 978 1 84310 126 0
ISBN-10: 1 84310 126 2
ISBN pdfeBook: 1 84642 044 X
Printed and Bound in Great Britain by
Athenaeum Press, Gateshead, Tyne and Wear
C O N T E N T S
Introduction 7
1. Defining Asperger Syndrome 13
2. Lee’s Story 29
3. Rachel’s Story 43
4. Sarah’s Story 57
5. Chee Kiong’s Story 71
6. Luke’s Story 85
7. Simon’s Story 99
8. Themes and Issues from the Stories 113
APPENDIX A: THE NARRATIVE APPROACH IN RESEARCH 157
APPENDIX B: THE RESEARCH PROCESS 161
REFERENCES 163
SUBJECT INDEX 167
AUTHOR INDEX 173
Acknowledgements
Thegenerouscontributionsofmanypeoplehelpedustowritethis
book:
First and foremost we would like to thank all the families we
interviewed,especiallyLee,Rachel,Sarah,CheeKiong,Lukeand
Simon, for being a part of this project and for the amazing
generosity they showed in sharing their personal stories with us.
Julia Gardner for reading through drafts of the book and
offering valuable advice.
Catherine Lee for some great conversations and for com-
menting on some draft chapters.
The National University of Singapore for providing financial
assistance for our research.
Laura Cockburn for all her support and for introducing us to
some of the families in this book.
AlltheautismandAspergerSyndromeorganizationsintheUK
thatpublicizedourprojectandhelpedustolocatefamiliesinthe
UK.
Our families for all their support over the years.
Ourbeautifulandinimitablesons,RohanandTaran,forbeing
there.
Introduction
A
dolescenceisatimeoftransition.Theadolescenthasonefootstill
in childhood and one foot tentatively testing the waters of
adulthood.Itisatimeof‘findingone’sfeet’anddefiningwhoweareso
that we are able to find our place in the more complex and demanding
adultworld.Inthisbookweexplorehowthoseteenagerswhoselivesare
furthercomplicatedbyhavingAspergerSyndrome(AS)grapplewiththe
adolescent quest to find the answer to the question ‘Who am I?’ Nita
Jackson (2002), who recently wrote about her experiences as an
adolescent with Asperger’s describes this sense of confusion in the
process of attempting to define herself as someone with AS:
I’mconfusedabouttheworldanditsmainstreammajority.What
would it be like being mainstream? Would I even have these
problems if I were a mainstreamer? Is Asperger’s syndrome as
bad an affliction as I make out? And who am I anyway? Apart
from being a representative of my syndrome, who am I, and
most importantly, who will I become? (p.49)
How then do teenagers with Asperger Syndrome view themselves and
theirownlives?Todate,mostliteratureonAspergerSyndromeandado-
lescence falls into three types:
7
8 ASPERGER SYNDROME, ADOLESCENCE, AND IDENTITY
1. accounts of AS as a social learning disorder (e.g. Howlin
2003)
2. effective strategies and tips for managing the AS teen
3. autobiographical accounts.
In this book we take a different approach by conducting in-depth bio-
graphical interviews with adolescents diagnosed with Asperger
Syndrome to collaboratively create their life stories. Life stories, as
distinct from case studies, attempt to provide an inside-out view of
people’s experiences. Weaskedtheteenagers totalkabout their experi-
ences at school, their relationships with friends and peers, their home
lives, their interests, and the meaning and impact of the label ‘Asperger
Syndrome’inshapingtheiridentitiesandtheiraspirations.Todate,little
work has been published that exclusively focuses on the contemporary
experiences of teenagers diagnosed as having Asperger Syndrome. As
teenagers, they are surrounded by a growing body of literature on AS.
TheyarethefirstgenerationtogrowupwiththelabelofASandarepart
of an emerging AS subculture with its own unique jargon and identity
(‘Aspie,’ ‘neuro-typical,’ ‘mainstreamer,’ etc.).
Wearealsointerestedinexaminingthesocialrepercussionsofrepre-
sentingadolescentsashavingAspergerSyndrome.Thistypeof analysis
has largely been absent in the literature. We feel it is important to ask
whoseknowledgeanddefinitionsarebeingrepresentedintheASlitera-
tureandwhethertheserepresentationsarereflectiveofthewaytheado-
lescents in this study view themselves. How do individuals diagnosed
withAspergerSyndromefeelaboutthemselves,theirlives,andthelabel?
Do they feel stigmatized or is it a valuable framework for explaining
some of the difficulties they experience in their lives? In other words,
howdotheseadolescentsdefinethemselvesanddotheseself-definitions
correspond with the ‘official’ definitions often imposed on them? We
hopetoaddresssomeoftheseissuesinthisbook.Similarly,itisinevitable
that in the delineation of any social group, stereotypes will emerge that
shapeourcommonperceptionofindividualsbelongingtothatgroup.In
our research we hoped to challenge some of these stereotypes about
people with AS.