Multiple Autisms: Spectrums of Advocacy and Genomic Science

302 Pages·2016·2.25 MB·English

by  Jennifer S Singh

MULTIPLE AUTISMS
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Multiple Autisms
Spectrums of Advocacy and Genomic Science
Jennifer S. Singh
University of Minnesota Press
Minneapolis • London
The University of Minnesota Press gratefully acknowledges financial
assistance for the publication of this book from the Ivan Allen College of
Liberal Arts at Georgia Tech.
An earlier version of chapter 4 was published as “Narratives of
Participation in Autism Genetics Research,” Science, Technology, and
Human Values 40, no. 2 (2015): 222– 49. doi: 10.1177/0162243914542162.
Portions of chapter 5 were published as “The Vanishing Diagnosis of
Asperger’s Disorder,” in Sociology of Diagnosis, Advances in Medical
Sociology, vol. 12, edited by PJ McGann and David J. Hutson, 235–5 7.
Bingley, U.K.: Emerald Group Publishing, 2011. Copyright Emerald
Group Publishing Limited. All rights reserved.
Poetry by Emily Perl Kingsley is reprinted in chapter 4. “Welcome to
Holland” copyright 1987 by Emily Perl Kingsley. All rights reserved.
Reprinted by permission of the author.
Copyright 2016 by the Regents of the University of Minnesota
All rights reserved. No part of this publication may be reproduced,
stored in a retrieval system, or transmitted, in any form or by any means,
electronic, mechanical, photocopying, recording, or otherwise, without
the prior written permission of the publisher.
Published by the University of Minnesota Press
111 Third Avenue South, Suite 290
Minneapolis, MN 55401- 2520
http://www.upress.umn.edu
Library of Congress Cataloging-in-Publication Data
Singh, Jennifer S.
Multiple autisms : spectrums of advocacy and genomic science /
Jennifer S. Singh.
Includes bibliographical references and index.
ISBN 978-0-8166-9830-1 (hc)—ISBN 978-0-8166-9831-8 (pb)
1. Autism. 2. Genetics—Research. 3. Autism—Research. I. Title.
RC553.A88S553 2016
616.85'882—dc23 2015008731
Printed in the United States of America on acid- free paper
The University of Minnesota is an equal- opportunity educator and
employer.
21 20 19 18 17 16 10 9 8 7 6 5 4 3 2 1
Dedicated to my loving parents,
Alfonso and Sally Singh
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Contents
Abbreviations ix
Preface xi
Introduction: Multiple Ways of Viewing Autism 1
1 Defining, Counting, Contesting: Changes in 21
Diagnosis, Prevalence, and Advocacy
2 Parent Advocacy and the Rise of Autism 37
Genetics Research
3 No Single Gene for Autism: The Emergence of 83
Genomic Styles of Thought
4 Simplex Families, Complex Exchanges: 123
Why Parents Participate in an Autism
Genomic Database
5 Living with Autism: Perspectives of Adults 153
on the Spectrum
Conclusion: A Spectrum of Knowledge Production 175
Acknowledgments 193
Appendix: Methods 195
Notes 203
Bibliography 245
Index 271
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Abbreviations
ADI– R Autism Diagnostic Interview– Revised
ADOS Autism Diagnostic Observation Scale
AGC Autism Genetic Cooperative
AGP Autism Genome Project
AGRE Autism Genetic Resource Exchange
ANI Autistic Network International
ASAN Autistic Self Advocacy Network
ASD autism spectrum disorder
CAA Combating Autism Act of 2006
CAN Cure Autism Now
CDC Center for Disease Control and Prevention
CNV copy- number variant
DAN! Defeat Autism Now!
DNA deoxyribonucleic acid
DSM Diagnostic and Statistical Manual of Mental
Disorders
GWAS genome- wide association studies
HGP Human Genome Project
IDEA Individuals with Disabilities Education Act
IACC Interagency Autism Coordinating Committee
IAN Interactive Autism Network
IMFAR International Meeting for Autism Research
INSAR International Society for Autism Research
ISAAC Internet System for Assessing Autistic Children
NAAR National Alliance for Autism Research
NDAR National Database for Autism Research
NIH National Institutes of Health
NIMH National Institute of Mental Health
NSAC National Society for Autistic Children
OSCR Online System for Clinical Research
PDD pervasive developmental disorders
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