In a Different Key: The Story of Autism

In a Different Key: The Story of Autism

John Donvan & Caren Zucker

Crown (2016)

Rating: ★★★★★

Tags: Psychology, History, Psychopathology, Autism Spectrum Disorders

Psychologyttt Historyttt Psychopathologyttt Autism Spectrum Disordersttt

An extraordinary narrative history of autism: the riveting story of parents fighting for their children ’s civil rights; of doctors struggling to define autism; of ingenuity, self-advocacy, and profound social change

Nearly seventy-five years ago, Donald Triplett of Forest, Mississippi, became the first child diagnosed with autism. Beginning with his family’s odyssey,
In a Different Key
tells the extraordinary story of this often misunderstood condition, and of the civil rights battles waged by the families of those who have it. Unfolding over decades, it is a beautifully rendered history of ordinary people determined to secure a place in the world for those with autism—by liberating children from dank institutions, campaigning for their right to go to school, challenging expert opinion on what it means to have autism, and persuading society to accept those who are different. 

It is the story of women like Ruth Sullivan, who rebelled against a medical establishment that blamed cold and rejecting “refrigerator mothers” for causing autism; and of fathers who pushed scientists to dig harder for treatments. Many others played starring roles too: doctors like Leo Kanner, who pioneered our understanding of autism; lawyers like Tom Gilhool, who took the families’ battle for education to the courtroom; scientists who sparred over how to treat autism; and those with autism, like Temple Grandin, Alex Plank, and Ari Ne’eman, who explained their inner worlds and championed the philosophy of neurodiversity.

This is also a story of fierce controversies—from the question of whether there is truly an autism “epidemic,” and whether vaccines played a part in it; to scandals involving “facilitated communication,” one of many treatments that have proved to be blind alleys; to stark disagreements about whether scientists should pursue a cure for autism. There are dark turns too: we learn about experimenters feeding LSD to children with autism, or shocking them with electricity to change their behavior; and the authors reveal compelling evidence that Hans Asperger, discoverer of the syndrome named after him, participated in the Nazi program that consigned disabled children to death.

By turns intimate and panoramic, 
In a Different Key
 takes us on a journey from an era when families were shamed and children were condemned to institutions to one in which a cadre of people with autism push not simply for inclusion, but for a new understanding of autism: as difference rather than disability.

**

Review

A
New York Times
Bestseller
A
New York Times
Editors' Choice

“Magnificent...Spellbinding—a fable about greed, power and betrayal told through the lens of autism...Chock-full of suspense and hairpin turns...This book does what no other on autism has done: capture all the slippery, bewildering and deceptive aspects...I have been the mother of an autistic son since 1988...I wept and laughed and raged while reading
In a Different Key
, all the while thinking, Yes! This is my experience, including the raw and dirty parts, but also the wonder and joy.”
–ANN BAUER, *WASHINGTON POST
*

“Remarkable…
In a Different Key: The Story of Autism
tells a riveting tale about how a seemingly rare childhood disorder became a salient fixture in our cultural landscape. It features vivid portraits of people with autism and their devoted parents and recounts dramatic controversies among well-intentioned and occasionally misguided advocates and doctors who have tried to help those with the condition. These gripping personal stories give the book tremendous narrative drive.”
–***WALL STREET JOURNAL

"The prose is vivid, the tempo rapid and the perspective intimate, as if each character has been filmed with a hand-held camera."
–
JEROME GROOPMAN, *NEW YORK TIMES BOOK REVIEW
*

“
In a Different Key
is a story about autism as it has passed through largely American institutions, shaped not only by psychiatrists and psychologists but by parents, schools, politicians, and lawyers. It shows how, in turn, the condition acquired a powerful capacity both to change those institutions and to challenge our notions of what is pathological and what is normal.”
—
STEVEN SHAPIN,
 
NEW YORKER

“This is not a how-to guide or a polemic on neurodiversity. The book probes a difficult subject with intelligence and compassion—and makes you think. The complete absence of hysteria will make it essential reading for many... its insights and quiet wisdom demand our attention, and gratitude.”
—*
AMY BLOOM;
O, THE OPRAH MAGAZINE

“
In a Different Key
is nothing if not judicious and fair-minded in its approach to a field harried by controversies and enmities from the very start… [the book] is grounded and sensible, which in the contentious world of autism activism constitutes a kind of grace.”
—LAURA MILLER
*
,
SLATE

*
*“The authors have captured the art of storytelling and the book therefore has a broad appeal, beyond those directly involved or affected by autism… Comprehensive and illuminating… From cover to cover this book stirs up a combination of emotions. Admiration for the parents that took a stand; incredulity at treatments and assumptions; and gratitude to scientists and activists that dedicate their expertise and devote their energy to making people with autism spectrum disorder feel part of a world that appears to fear nonconformity to what is considered normal… You must read this book.”
*
*—THE LANCET

*
*"A fascinating history of science, treatment, and civil rights."
—
*NEWSDAY
“A fascinating history of this confounding condition.”
—
PEOPLE

“A fascinating and comprehensive history told from a personal perspective…
In a Different Key* shares the often debilitating aspects of autism yet shows how those with autism can and do flourish with the right supports and environments, and how their lives, and the lives of their families, are filled with joys and triumphs and fun and irreverence, too.”
*
—CHICAGO TRIBUNE

“Fascinating… A 560-page history of autism sounds intimidating, but fear not.
In a Different Key*… takes an accessible approach that sheds much light on this human condition... through the human stories of those raising autistic children, of those trying to treat, study and research it and those who are autistic.”
*
*—SEATTLE TIMES
“In this compelling, well-researched book, the authors weave together the heroic search by parents for treatment and services for their children with the personal stories of a fascinating cast of characters. An invaluable guide for those dealing with autism and an inspiring affirmation of every individual’s contribution to 'the fabric of humanity.'”
—
KIRKUS
(starred)

“Donvan and Zucker’s tremendous study keeps autism at its center while telling an extraordinary tale of social change... Viewed as a whole, the narrative ultimately reveals a transition from an emphasis on treating individual cases to a more society-wide effort for advocacy and inclusion—an effort that this book will do much to advance.”
—***PUBLISHERS WEEKLY

*“In a Different Key
 is almost as much a history of coping with ignorance and uncertainty as it is a voyage of discovery... It is the great achievement of this book to show how this happened in an exciting and poignant way.”
—
SUNDAY TIMES
**

"Sweeping in scope but with intimate personal stories, this is a deeply moving book about the history, science, and human drama of autism. It's also something larger: a fascinating exploration of a social movement that grappled with the mysteries of mind, behavior, and the relationship between parents and children."
—
WALTER ISAACSON
, author of 
The Innovators
 and *Steve Jobs

“Donvan and Zucker’s generous yet sharp-eyed portraits of men, women, and children—most of them unknown until now—make it stunningly clear that we all have a stake in the story of autism. We come to understand that we are all wired differently, and that how we treat those who are different than most is a telling measure of who we truly are. This is the kind of history that not only informs but enlarges the spirit.”
—
SUSAN CAIN
, author of 
Quiet: The Power of Introverts in a World That Can't Stop Talking*

“In this long-awaited work, Donvan and Zucker sensitively and accurately portray the emergence of understanding of this thing we now call autism, a story that goes back hundreds of years. They make a compelling case for autistic traits—gift and disability alike—being part of the human condition. In the words of child psychiatry pioneer Leo Kanner, autism was ‘always there,’ even before the diagnosis was invented. 
In a Different Key
also provides a fresh take on the issue of neurodiversity in all its complexity.” 
—
JOHN ELDER ROBISON
, author of 
Look Me in the Eye
 and 
Switched On

“In this absorbing book, John Donvan and Caren Zucker provide a comprehensive history of autism: identifying records that point toward the existence of the condition long before it was named; unpacking the evolution of the diagnosis; chronicling the history of blame attached to it; and narrating its explosion as one of the most common syndromes among children today. Fast-paced and far-reaching, this book contextualizes the arguments that autism is a horrifying epidemic with those that say it is a valuable aspect of human diversity. This is an important missing piece to the conversation about autism; no one trying to make sense of the spectrum should do so without reading this book.”
—ANDREW SOLOMON
, author of
Far from the Tree 

“
In a Different Key
 transports the reader back to the earlier days of autism. It is essential reading for anyone who is interested in how society treats those who are different.” 
—
TEMPLE GRANDIN
, author of 
Thinking in Pictures
 and 
The Autistic Brain

"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 colourful personalities and conflicting ideas that deepen the fascination of autism.”
—
UTA FRITH
, Emeritus Professor of Cognitive Development at 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 co-founder of
PBS NewsHour