Worlds of autism : across the spectrum of neurological difference

357 Pages·2013·3 MB·English

by  Davidson

WORLDS OF AUTISM
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Worlds of Autism
Across the Spectrum of Neurological Difference
Joyce Davidson and Michael Orsini EDITORS
University of Minnesota Press
Minneapolis • London
Copyright 2013 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, mechani-
cal, 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
Worlds of autism : across the spectrum of neurological difference /
Joyce Davidson and Michael Orsini, editors.
Includes bibliographical references and index.
ISBN 978-0-8166-8888-3 (hc)
ISBN 978-0-8166-8889-0 (pb)
1. Autism. 2. Autism spectrum disorders. I. Davidson, Joyce, editor.
II. Orsini, Michael, 1967–, editor.
RC553.A88W67 2013
616.85'882—dc23
2013030442
Printed in the United States of America on acid- free paper
The University of Minnesota is an equal- opportunity educator and employer.
20 19 18 17 16 15 14 13 10 9 8 7 6 5 4 3 2 1
Contents
ACKNOWLEDGMENTS vii
INTRODUCTION. Critical Autism Studies:
Notes on an Emerging Field 1
Michael Orsini and Joyce Davidson
PART I. Approaching Autism
1. Autism in an Age of Empathy: A Cautionary Critique 31
Patrick McDonagh
2. Autism and the Posthuman 53
Stuart Murray
3. Cerebralizing Autism within the Neurodiversity Movement 73
Francisco Ortega
4. Autism as a Form of Biological Citizenship 97
Charlotte Brownlow and Lindsay O’Dell
PART II. Researching the Politics and
Practice of Care
5. Autism and Genetics: Profit, Risk, and Bare Life 117
Majia Holmer Nadesan
6. Caring for Autism: Toward a More Responsive State 143
Kristin Bumiller
7. P articipatory Research with Autistic Communities:
Shifting the System 169
Dora Raymaker and Christina Nicolaidis
PART III. Diagnosis and Difference in Autism
8. Capturing Diagnostic Journeys of Life on
the Autism Spectrum 191
Sara Ryan
9. Divided or Opposed? The Level- of- Functioning
Arguments in Autism- Related Political Discourse
in Canada 213
Dana Lee Baker and Lila Walsh
10. Autism and Social Movements in France:
A Comparative Perspective 239
Brigitte Chamak and Beatrice Bonniau
PART IV. Cultural Productions
and Representations of Autism
11. Narrating Autism 261
Mark Osteen
12. The Shifting Horizons of Autism Online 285
Joyce Davidson and Michael Orsini
13. Autism and the Task of the Translator 305
Kristina Chew
14. “All the Things I Have Ever Been”: Autoethnographic
Reflections on Academic Writing and Autism 319
Dawn Eddings Prince
CONTRIBUTORS 331
INDEX 335
Acknowledgments
We would like to acknowledge the generous financial support of the
Social Sciences and Humanities Research Council of Canada. Many of
the contributors to this volume presented drafts of their chapters at the
2010 Critical Autism Studies workshop at the University of Ottawa, and
this event could not have taken place without the substantial funding pro-
vided through the SSHRC Aid to Research Workshop and Conferences
Program. Thanks are also due Queen’s University (Office of Research
Services) and the University of Ottawa (Faculty of Social Sciences) for
financial support.
We thank those workshop attendees whose work we could not in-
clude in this collection. Each contributed to our own understanding
of critical autism studies, and we hope there are further opportuni-
ties to continue the important conversations that began at the Ottawa
workshop.
At the University of Ottawa, Jenna Martinuzzi was an excellent con-
ference organizer and Sarah Wiebe was a superb editorial assistant in the
preparation of this book. Victoria Henderson from Queen’s University
provided invaluable assistance in the preparation of the grant application
for funding the workshop.
Our sincere thanks to Danielle Kasprzak and Jason Weidemann, our
editors at the University of Minnesota Press, for shepherding this proj-
ect to the finishing line and for believing in a critical, interdisciplinary
collection such as this. The University of Minnesota Press is a beacon for
scholars at the intersections of disciplines and consistently produces re-
markable publications. Thanks, too, to two anonymous reviewers of the
manuscript; their thoughtful commentary was very much appreciated.
Joyce thanks Mick Smith, Katie Hemsworth, Sophie Edwards, and
Victoria Henderson (again!). She dedicates this book to Emily Rain (our
youngest workshop participant), her Gran and Grandad, and all her
furred and feathered friends of the Hundred Acre Wood.
Michael acknowledges the support of friends, family, and colleagues
who listened to his endless bellyaching, including Mary and Robert
vii
viii ACKNOWLEDGMENTS
Gordon, Dave and Carrie Longbottom, Shoshana Magnet, Francesca
Scala, Miriam Smith, and Luc Turgeon. Most of all, he thanks Victoria,
Emma, and Lucca for their consistent love and support, and his parents
and Aunt Mary for “being there.” Empathetic scholarship begins with
the people who nourish us intellectually as well as emotionally.
Critical Autism Studies
INTRODUCTION.
Notes on an Emerging Field
Michael Orsini and Joyce Davidson
It is difficult to think, much less write, about autism today without
some reference to the statistics. Talk of “exploding” prevalence rates
and a public health crisis of “epidemic proportions” dominates the
landscape (see Nash 2002). The onward march of statistical knowledge
about autism—f rom a prevalence rate of 1 in 150 in 2000, to 1 in 110 in
2006, and 1 in 88 in 2008 (Centers for Disease Control and Prevention
2012)— communicates a sense of undeniable urgency (Rice et al. 2007).
Autism is depicted as unstoppable and difficult to contain. Failing to
intervene early, parents are warned, can be disastrous. Although autism
varies significantly in its effects on individuals, statistics aggregate the
rich, qualitative experiences of life with autism into a language that is
(too) easy to understand. The “objective” data about this complex condi-
tion homogenize the diversity of autistic experience and gloss over the
situated knowledge of those most intimately affected by autism: autistic
people themselves.
As the last few decades have shown, autistic people are increasingly
determined to shape broader public discourses about this condition,
either through artistic or cultural interventions or through direct engage-
ment in political or social activities that communicate beyond autistic
worlds the many varieties of being autistic. The Internet, for instance,
provides an increasingly rich source of trenchant commentary about
firsthand experience of what has come to be known as the autism spec-
trum, as well as interventions from parents and caregivers committed
to sharing their own perspectives, insights, and challenges. One of the
goals of this collection is to emphasize just how much everyone, what-
ever their relation to autism, still has to learn about— and from— autistic
worlds. Although the insights that our variously positioned contribu-
tors provide here are not always of direct practical relevance— the book
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