Read In a Different Key: The Story of Autism Online
Authors: John Donvan,Caren Zucker
Tags: #History, #Psychology, #Autism Spectrum Disorders, #Psychopathology
In a Different Key: The Story of Autism (2 page)
“This one volume captures the textured and sometimes turbulent story of autism in all of its facets: as a scholarly and scientific endeavor, as a political and legal enterprise, as a social movement. Most especially it embeds these developments within stories of people whose lives defined and shaped the course of autism.
In a Different Key
is authoritative and utterly absorbing.”
—
JUDITH FAVELL,
past president, Developmental Disabilities Division, American Psychological Association
About the Author
JOHN DONVAN
is a multiple Emmy Award-winning correspondent for ABC and the moderator of the Intelligence Squared U.S. debate series. Find him on Twitter at @johndonvan.
CAREN ZUCKER
is a Peabody award-winning television news producer, a twenty-five-year veteran of ABC News, and producer and co-writer of the six-part PBS series “Autism Now.”
Advance Praise for
IN A DIFFERENT KEY
“
In a Different Key
is filled with gripping personal histories that powerfully illustrate the mistakes and malpractices in the diagnosis and treatment of autism; the courage and resilience of those who fought for better treatment and deeper understanding; and the sheer variability of people who are given the autism label and too often lumped together as ‘disabled.’ A fascinating and revealing read, even for those with no personal connection to the topic.”
—
STEPHANIE COONTZ
, author of
The Way We Never Were:
American Families and the Nostalgia Trap
“Bravo to Donvan and brava to Zucker. Comically/tragically, autism’s history is as emotionally dysfunctional—and as beautiful—as it gets. Finally, we all have an exhaustive reckoning.”
—
MICHAEL JOHN CARLEY
, founder, GRASP; author of
Asperger’s from the Inside Out
“Donvan and Zucker delve deep into both the science and the politics of autism across time. They tell the story of the extreme treatments that have been tried, such as administering LSD or electric shocks in the ’60s, to ‘normalize’ these children. They uncover the tragic mercy killing of a teenager with autism by his father, and explore the MMR vaccine-causes-autism theory, named by
TIME
magazine as top of the list of ‘great science frauds.’ This book will make a remarkable contribution to the history of autism.”
—SIMON BARON-COHEN
, author of
The Essential Difference;
director, Autism Research Centre, Cambridge University
“Autism is a shape changer that has continuously resisted being pinned down. This meticulously researched book leads us deeply into the history of autism and brings to life the colorful personalities and conflicting ideas that deepen the fascination of autism.”
—UTA FRITH
, Emeritus Professor of Cognitive Development, University College London
“Autism remains one of the great medical mysteries of our time and this is the first book to fully document the decades of efforts by parents, doctors, and society to deal with it—so far. For, as the authors say, this is a story that is far from over.
In a Different Key
is a monumental piece of journalism that promises to be a classic, a comprehensive baseline for evidence only future research can reveal. It is written with clarity and grace, and with heart, because the authors have both lived with autism in their own families.”
—ROBERT MACNEIL
, former anchor and cofounder of
PBS NewsHour
“This one volume captures the textured and sometimes turbulent story of autism in all of its facets: as a scholarly and scientific endeavor, as a political and legal enterprise, as a social movement. Most especially it embeds these developments within the stories of people whose lives defined and shaped the course of autism.
In a Different Key
is authoritative and utterly absorbing.”
—
JUDITH FAVELL
, past president, Developmental Disabilities Division, American Psychological Association
Copyright © 2016 by Caren Zucker and John Donvan
All rights reserved.
Published in the United States by Crown Publishers, an imprint of the Crown Publishing Group, a division of Penguin Random House LLC, New York.
www.crownpublishing.com
CROWN is a registered trademark and the Crown colophon is a trademark of Penguin Random House LLC.
Library of Congress Cataloging-in-Publication Data
Names: Donvan, John (John Joseph) 1955– author | Zucker, Caren (Caren Brenda) 1961– author.
Title: In a different key: the story of autism / John Donvan and Caren Zucker.
Description: New York: Crown Publishers, [2016]
Identifiers: LCCN 2015024706 | ISBN 9780307985675 (hardback)
ISBN 9780307985682 (ebook)
Subjects: LCSH: Autism spectrum disorders. | Autism spectrum disorders—History. | People with disabilities. | BISAC: PSYCHOLOGY / Psychopathology / Autism Spectrum Disorders. | PSYCHOLOGY / History. | SOCIAL SCIENCE / People with Disabilities.
Classification: LCC RC553.A88 D67 2016 | DDC 616.85/882—dc23 LC record available at
http://lccn.loc.gov/2015024706
ISBN 9780307985675
eBook ISBN 9780307985682
Cover design by Christopher Brand
v4.1
a
For Helen and Frank, for the words,
and Edna, for the spark
.
—JD
For Jonah, Molly, Mickey, and John,
and Mom and Dad, for everything you taught me
.
—
CZ
CONTENTS
PART I:
A
UTISM
’
S
F
IRST
C
HILD
(
1930s–1960s
)
1 Donald
2 A Menace to Society
3 Case 1
4 Wild Children and Holy Fools
5 Doubly Loved and Protected
6 Some Kind of Genius
PART II:
T
HE
B
LAME
G
AME
(
1960s–1980s
)
7 The Refrigerator Mother
8 Prisoner 15209
9 Kanner’s Fault
10 Biting Her Tongue
11 Mothers-in-Arms
12 The Agitator
13 Home on a Monday Afternoon
PART III:
T
HE
E
ND OF
I
NSTITUTIONS
(
1970s–1990s
)
14 “Behind the Walls of the World’s Indifference”
15 The Right to Education
16 Getting on the Bus
17 Seeing the Ocean for the First Time
PART IV:
B
EHAVIOR
, A
NALYZED
(
1950s–1990s
)
18 The Behaviorist
19 “Screams, Slaps, and Love”
20 The Aversion to Aversives
21 The “Anti-Bettelheim”
22 47 Percent
23 Look at Me
24 From Courtroom to Classroom
PART V:
T
HE
Q
UESTIONS
A
SKED IN
L
ONDON
(
1960s–1990s
)
25 The Questions Asked
26 Who Counts?
27 Words Unstrung
28 The Great Twin Chase
29 Finding Their Marbles
PART VI:
R
EDEFINING A
D
IAGNOSIS
(
1970s–1990s
)
30 The Autism Spectrum
31 The Austrian
32 The Signature
PART VII:
D
REAMS AND
B
OUNDARIES
(
1980s–1990s
)
33 The Dream of Language
34 The Child Within
35 An Elusive Definition
36 Meeting of the Minds
37 The Magic Man
PART VIII:
H
OW
A
UTISM
B
ECAME
F
AMOUS
(
1980s–1990s
)
38 Putting Autism on the Map
39 Society’s Emergency
PART IX:
“E
PIDEMIC
” (
1990s–2010
)
40 The Vaccine Scare
41 Autism Speaks
42 A Story Unravels
43 The Greatest Fraud
44 Finding a Voice
45 Neurodiversity
46 A Happy Man
Epilogue
