In a Different Key: The Story of Autism by John Donvan (Epub)

Description

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.

User’s Reviews

Review A Wall Street Journal Top Ten Best Nonfiction Book of 2016 Washington Post Notable Nonfiction List for 2016 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“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

Reviews from Amazon users, collected at the time the book is getting published on UniedVRG. It can be related to shiping or paper quality instead of the book content:

⭐ I first checked this book out at my local library out of curiosity, since some of my family members, including me are autistic. I was hesitant that it might be a hard read or a boring read. What a surprise! This book is riveting! I immediately ordered myself a copy and am still reading it. Since that time, I have purchased another copy to pass around my family so I can keep my own copy at home. Great book. Well researched. This is a book that I will value for a long, long time.

⭐ No genes have been identified with autism, a neurodevelopmental condition that is characterized primarily by a “difficulty processing language and a lack of social connection.” A diagnosis is established through clinical observation of recognized traits as well as cognitive/behavioral testing. There are no biomarkers that tell a person, “You have autism.”Donovan and Zucker introduce and anchor their comprehensive narrative around the story of Donald Triplett, the first person diagnosed with autism in 1943 at age 10. They weave in stories of families struggling to understand their child’s neurodivergent behaviors, and the hard-won work to secure them services, resources and research into a condition that resists a medical diagnosis generally required to unlock access, attention and funding.Though a lively read, it’s not an inspiring one, as many of the profiled children maintain their insular worlds despite years of interventions and accommodations to sensitize them to their surroundings. “In A Different Key” presents compelling examples of societal change and opportunity – mostly in education – but the change is driven and facilitated by the neurotypical community and not the neurodivergent one, which, due their deficits in communication, struggles to hit the right notes.The story closes as it opens – with Triplett, now in his eighties, continuing to live, with lots of support, in his rural Mississippi town. Throughout the book, the authors offer his life as an example of successful integration, but I read their rosy and prejudicial tale as ironically highlighting the challenge for people with autism to embrace the wider world.

⭐ I couldn’t get through it. There is some interesting history included, but way too much propaganda to sift through. When I started seeing that there was a complete disregard for all of the medical research developments in biomarker identification…no discussion of immune disorder, gut dysbiosis, mitochondrial dysfunction…I gave up. I ran through the index to make sure I wasn’t missing anything useful, and it became even more obvious that this revisionist history has its own anti-science agenda. Waste of paper…disappointed this poorly researched book almost received a Pulitzer!The myths perpetuated in this book are at the root of the medical discrimination that those with ASD suffer daily. This normalization of chronic medical issues needs to stop.

⭐ This is an extraordinary book. John Donvan is a television correspondent for ABC, and Caren Zucker is a journalist and producer. Together, they have dug deep into the history of autism – from an unknown psychiatric disorder to a diagnosis climbing from 4 to 5 cases per 10,000 people in 1966 to approximately 1 per 100 today. Donvan and Zucker tell the story of autism in 46 fast-paced chapters, presenting detailed accounts of the biographies of the characters: parents, children, psychologists, physicians, advocates and more — each viewed as if seen through a hand held camera. When a child in a family is not right, the whole family suffers.Such was the case when Donald who was born in 1933 to affluent parents in Forest, Mississippi.Donald was an odd child:When he was seven, an examiner asked him a question for the Binet-Simon IQ test. If I were to buy four cents’ worth of candy and give the storekeeper ten cents, how much would I get back? I’ll draw a hexagon, Donald replied….He showed scant interest in the inhabitants of the outside world, and that included his parents. Of all his peculiarities, this was the most difficult for them to accept – that he never ran to his father when he came home from work, and that he almost never cried for his mother. Relatives were unable to engage him…Oblivious to those around him, he would turn violent the instant his activities were interrupted…it became clear he was protecting sameness. Mary Triplett, Donald’s mother concluded that he was hopelessly insane, before the diagnosis of autism was invented. Her husband, Oliver, a lawyer, was known as Beamon to everyone, and was the former mayor’s son. Their doctor advised them that they had overstimulated Donald and he should be placed in an institution.During the first half of the twentieth century, children like Donald were called a string of derogatory labels:Cretin, ignoramus, simpleton, maniac, lunatic, dullard, dunce, demented, derange, schizoid, spastic, feebleminded, and psychotic. Even in Dr. Benjamin Spock’s (1903 – 1998), “The Common Sense Book of Baby and Child Care,” first published in 1946, he recommended that parents immediately place a Mongolian baby in an institution.For families like Donald’s, sending their child to an institution far from their home created shame, guilt, sorrow, confusion and loss:They sent away their children in secret, and in time, the children themselves became secrets, never to be spoken of again. Mr. and Mrs. Triplett brought Donald back home from the institution and took him to be evaluated by the eminent child psychiatrist Leo Kanner (pronounced “Kahner”; 1894 – 1981) at Johns Hopkins hospital in Maryland.Donald was case number 1 in Kanner’s major work published in 1943, “Autistic Disturbances of Affective Contact.” Dr. Kanner studied eleven cases, 3 girls and 8 boys, he later called autism. ”It was Kanner who identified the two defining traits common to all of them: the extreme preference for aloneness and the extreme need for sameness.” Donald is now 82 years old. The first time I evaluated an autistic child in the 1970s, I met two warm, loving, guilt-ridden parents telling me through their tears about their unresponsive, odd five year old child who didn’t talk and was obsessed with playing with door knobs and hinges. When this child entered my office, he walked past me as if I wasn’t there and went straight to the curtain and began sucking the on the cloth. I was aware that blaming mothers for causing autism — and other psychiatric disorders — was the theory many clinicians studied to diagnose and treat autistic children. Bruno Bettelheim (1903 – 1990), a prominent child psychologist, who had a Ph.D. in art history, was a famous clinician who promoted that theory. He wrote and lectured that “refrigerator mothers” raised their children in a climate of emotional frigidity causing autism. Bettelheim recommended a “parentectomy”, taking these autistic children away from their parents and putting them in a therapeutic milieu. Bettelheim founded the Orthogenic School at the University of Chicago as a residential treatment program. I couldn’t square my subsequent many encounters with autistic kids and their parents with the refrigerator mother theory expressed in Bettelheim’s famous book The Empty Fortress. My doubts about this blame the mother theory of autism were reinforced in a yearlong seminar taught by Fritz Redl, a contemporary of Bettelheim, and a brilliant teacher and writer. In this seminar of 8 students, 3 of the students had worked for Bettelheim, whose nickname they said was Bruno Brutalheim — because of how he treated staff, children and parents. In 1990 Bettelheim committed suicide, his method placing a plastic bag over his head. My thought was he recognized the monstrous damage he inflicted on children and their families with his cockamamie theory and treatment approach to autism. But who can know for sure. Donvan and Zucker uncover the stories of courageous characters who fought against the blame theory of autism. Scientists, sometimes with an autistic child of their own, and parents of autistic kids worked tirelessly to get kids out of institutions, band together to make the education establishment teach autistic kids in public schools, find behavioral treatments that worked, and more.The media did much to broadcast and humanize the life of autistic people For example, the brilliant movie “Rain Main’ told the sensitive story about an autistic man starring Dustin Hoffman (1937 – ); Temple Grandin (1947 – ), the first celebrity autistic adult with a Ph.D. in biological sciences and a professor of animal sciences at Colorado State University wrote best-selling books about growing up with autism and lectures around the world.. A movie about the life of Temple Grandin garnered rave reviews, starring Claire Danes (1979 – ). Oliver Sacks (1933 – 2015), the brilliant neurologist, wrote a book of essays called, “Anthropologist on Mars,” with the title referring to his chapter on Temple Grandin. Along the way there were many missteps among autistic advocacy groups and scientific findings:It was an early harbinger of the tragic tendency of autism advocacy groups, or individuals in them, all supposedly dedicated to the same cause, to turn against one another. It had been there at the beginning, and it would flare up, again and again, to the detriment of the greater cause, in every decade to follow. In 1998, a British physician published a shocking paper in the well-respected Lancet journal claiming that the MMR (measles-mumps-rubella) vaccine may cause autism. The study was eventually discredited, the physician lost his license, but not without significant panic in the community about the safety of giving children vaccines. Many educated people stopped giving their children the MMR vaccines and “measles was becoming active again the United States, with reported infections reaching a twenty –year high in 2014.” Whether we are witnessing a true increase in the autistic population, or whether the definition of autism on a spectrum makes the difference in numbers remains controversial. Because we know so little about the complex etiology of autism, crank, expensive treatments masquerading as science promising quick cures lurk at the doors of progress, waiting to lure parents down the road of danger psychiatric misadventures. Advocacy for autistic children and adults is essential and must be driven by scientists.

⭐ Very informative. It brings to life the reality of Autism in a truly readable, interesting way. I learned a lot. Living with a child with autism born in the early 80’s and having to research and find someone to help me figure out how to help her, I can tell you this book has given me a lot of understanding about the struggles that I was not aware of.

⭐ As a mom to a child with autism, this was a much needed read. It didn’t teach me much about my daughter (except that her impressive indifference to cold is apparently part of her autism). But it gave me a whole lot of perspective, and filled me with gratitude – for all the people who worked so hard to get to where we are today, where a diagnosis leads to services rather than blame and institutionalization. What individual parents were able to accomplish is so inspiring, it has me reevaluating what more I could be doing. The book was well written and drew me in quickly. Somewhere after the first 300 pages it became a little slower, but there was always enough to keep me reading and I’m very glad I did.

⭐ I gave this book five stars because it not only did a great job of giving a chronological history of the disorder, but of also making it a personal story that many people can relate or empathize with. Many people I know do not fully realize what autism is, and usually have ideas about it that are not completely true. I would recommend this book to anyone who is curious about the disorder or who are directly involved with it (those who have autism, parents of autistic individuals, and therapists that work with autistic people).

⭐ A very well written story of autism. This is a very good book if you are interested in knowing more about the condition, it’s history, and current situation. I have no connection to autistic people but have always been curious about what exactly autism is. This book answers and does so with great writing, research, and depth. It reads like a novel at times and is hard to put down. The authors were able to bring together all of the key events and players in the story and weave that in beautifully into a fantastic book. They take no sides and never preach; rather they tell the tale with passion, detail, and warmth. Absolutely a wonderful book.

⭐ The world is a better place with this book in it. I am a better person for having read this book.All of my friends (and myself) question why a 20-year-old with no personal connection to autism would be so interested in this book. Autism has always fascinated me; I don’t know why. I do know that this book answered everything I could have ever wanted to know about autism.If only school textbooks were written like this book. The authors do such a wonderful job of taking so much information and turning it into beautiful and relatable stories. Very rarely did I feel like I was reading a biographical, non-fiction book like the ones I’m used to reading as a result of educational assignments. I think this was strengthened by the fact that the authors have backgrounds in television. They know how to tell a great human narrative.A few months ago, late on a Saturday night on my college campus, I ran into a group of kids handing out flyers. I was about halfway through this book at the time. I thought to myself, “oh my god who the heck is bothering people at 10pm on a Saturday night.” I quickly retracted my negative thoughts when I was handed a flyer about neurodiversity. I struck up a conversation with the girl who handed me the flyer. She revealed that she was on the spectrum. We spoke for 20 minutes about a range of topics from ABA to Asperger’s to Neurodiversity. It was enlightening and heartening to see such passion.As I read the latter half of the book, I frequently thought back to that conversation. I can only imagine the impact this book might have on readers who have much closer connections with people on the spectrum than I do.The authors do a wonderful job of remaining partial and non-bias in most situation where there’s neither a right or wrong to certain sides. I think right now, a very interesting debate that they pose later on in the book is whether or not autism is something to be cured. I don’t know if I have an opinion on it, but I do know that I am immensely fascinated in seeing how autism develops in the future. As I grow older, I hope that my financial and professional situations will provide opportunities for me to make a difference within this community.Thank you for a compelling book, and a wonderful journey.

⭐ This book was not always easy to read, as some of the history was disturbing, but I learned so much about how we have gotten to where we are now. As with many new medical conditions there is a lot of trial and error to go through before figuring out just what you’re dealing with. There were so many heroes along the way sacrificing so much to get their story told so that people would know about what life was like for the families affected by autism. I appreciated the time line at the end to help put all the characters and events into chronological order to serve as a review.

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