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

Description

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.

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 –This text refers to an out of print or unavailable edition of this title. Excerpt. © Reprinted by permission. All rights reserved. 9780307985675|excerpt Donvan / IN A DIFFERENT KEY 1 Donald In 1935, five Canadian baby girls, all sisters, edged out Niagara Falls on the list of Canada’s most popular tourist draws. That year, up to six thousand visitors each day took Route 11 into far northern Ontario for the sole purpose of gawking at the babies. By order of the provincial government, they had recently been removed from the care of their farmer parents, to be raised instead in a hurriedly built “hospital” situated not far from the family farmhouse. There they would have indoor plumbing, electricity, and a “scientific” upbringing overseen by a full-­time doctor and two full-­time nurses. Three times a day, on cue, the girls were carried out to a grass-­covered “play area” just a few yards from where a crowd waited for them. The audience was packed into a specially designed viewing arcade, tented and fitted with one-­way screens so that the girls could never see who was making all the noise. Invariably, the moment they came into view, a warm sigh would float aloft, followed by coos, squeals, and scattered applause at the sight of history’s first surviving identical quintuplets, who had been given only hours to live the night they were born, in May of the previous year. Exotic by virtue of their genetic rarity, the Dionne quintuplets imprinted themselves indelibly on their generation. They were a matched set, yet unmatched in the example they set of human resilience, the most famous children on earth. The future queen of England would visit them. Mae West, Clark Gable, and Bette Davis all made the trip north. So did Amelia Earhart, six weeks before her final flight, not to mention thousands of ordinary families on vacation. All were transfixed, but never, apparently, troubled by the bizarreness, even cruelty, of the arrangement—­the girls’ separation from their parents and from other children, their confinement in a setting they were allowed to leave only three times over the course of nine years, their government’s exploitation of a random biological novelty to bring tourist dollars into a depressed province. It was estimated that the public exhibition of the girls, known as Quintland, increased revenues for Ontario by $110 million over those nine years. The family shared in some of the riches as well. By the time the girls’ father sued successfully to reunite the family, well into World War II, he was driving a Cadillac. Money had also poured in from movie deals, contracts for exclusive interviews, and a series of endorsements that put the girls’ faces in almost every kitchen in America—­on calendars, bottles of Karo syrup, and boxes of Quaker Oats. For years to come, no seasonal ritual came or went—­not Christmas Eve, not Halloween night, not Mother’s Day—­without glowing newspaper and magazine stories catching readers up with the Dionne quints. It was no surprise that the girls would also mean something to a little boy named Donald, who was growing up in Forest, Mississippi, a small town nearly as rural as theirs. Though only eight months older than them, Donald was already able to recite their names: Emilie, Cecile, Marie, Yvonne, and Annette. Except that, for Donald, these were not the names of girls. They were colors inside bottles. “Annette and Cecile make purple,” he would declare as he sketched, handling his set of paint bottles. In a sense, he had it right, insofar as his “Annette” bottle contained blue paint, and “Cecile” held red. But while his color theory was sound, his reaction to the girls was peculiar. Unlike everyone else, Donald was captivated not by the girls’ humanity or the astonishing fact of their survival but by the raw geometry of their sameness. They came in an identical set of five. Just like his bottles. But they were also different, like the paint inside his bottles. It seems to have been this paradox that caught and held his attention. If it had only been a game he was playing—­some deliberate silli­ness or make-­believe—­then what Donald called his paint bottles would never have mattered much to anyone but himself. Certainly it would not be a story worth telling so many decades later. But he was serious. Blue was Annette and red was Cecile, relentlessly and earnestly, whether Donald was drawing with crayons or talking about a candy cane. He was inflexible about this, and much else besides. The word “yes,” for example, always had to mean one thing and one thing only: that he wanted to be hoisted up onto his dad’s shoulders. “You” was his fixed way of saying “I,” and vice versa. Some words, like “chrysanthemum,” “business,” and “trumpet vine,” he repeated endlessly, with no decipherable intention. He was once observed staring into empty space, writing letters with his fingers in the air, commenting as he went along, “Semicolon, capital, twelve, twelve, slain slain; I could put a little comma.” The way he thought about numbers was also unique. When he was seven, an examiner asked him a question from the Binet-­Simon IQ test, as it was then called: “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,” he said in reply. Internally the gears were obviously meshing, but they seemed to slip, critically, when the task was to communicate clearly with others. His was a language of hexagons and chrysanthemums, whether it made sense to others or not. Indeed, Donald 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, and when Santa showed up one Christmas, in what seems to have been a calculated effort to break through to the little boy, Donald paid him no heed whatsoever. Seemingly oblivious to the people around him, he would turn violent the instant his activities were interrupted, whether he was sketching words in the air or spinning pot lids on the floor. Over time, it became clear that he was protecting something: sameness. Pure, unadulterated routine. He could not tolerate even the slightest changes to his physical surroundings. Furniture could not be moved, walks outdoors had to retrace exactly steps already taken, and toys had to be arranged precisely as he had left them. Anything out of place would set off wild tantrums. Of course, this meant Donald had to be able to remember the arrangements of things, and for this he relied on his astounding capacity for recall. He could watch his father put different-­colored beads on a string and then reproduce the pattern without a single glance at the original. He could rebuild a tower of blocks that had been knocked over exactly as it had been, each side of each block facing in its original direction. At the age of two, having easily mastered the alphabet, he immediately learned to recite the letters in reverse. Neither was much of a challenge, since the order never changed, backward or forward. Odder than each of these behaviors on its own was the fact that they were locked together in a distinct combination of deficits and talents. And yet this constellation of behaviors, which shaped Donald’s personality so comprehensively and dramatically, had no name. For that reason, Donald’s mother drew the only conclusion that made sense to her, relying on the only words she could think of. With regret and sorrow, she wrote a letter in which she confessed that her little boy was “hopelessly insane.” The diagnosis of “autism” had not yet been invented. Mary Triplett, Donald’s mother, was the one who would change that. She and Donald’s father intended only to get help for their son, but in doing so, they set in motion a chain of events that would culminate in the discovery of autism in Donald, and the publication of the first internationally recognized description of the condition in a medical journal. But before any of that could happen, Donald’s parents would first have to undo a mistake they had made early and regretted almost immediately. They had to get him back home. The last time the three of them had been together as a family had been just over a year earlier. They had been driving south out of Forest, a journey of about an hour ahead of them—­two at most. But Donald, not quite four years old in that late summer of 1937, could not have been expected to understand what an hour feels like, much less guess that when the ride ended, his mother and father would disappear from his life altogether. He was a boy who dreaded riding on or in moving objects. Tricycles provoked in him a mortal terror. He fled from swings. But ensconced between his parents in the front seat of the Buick, Donald could lean against his mother if he wanted to. True, he had never really cried for her, never fixed his gaze on her and shared a moment of tenderness. Not once during this ride would he look up at her and smile, and she knew that. That was the hardest thing for Mary—­Donald’s utter emotional indifference to her presence. The boy beside her did not seem to care in the slightest whether she caressed or kissed or hugged him. If she were to turn away and face the open window, lost in her own thoughts, he would never cling or whimper to win back her attention. One of the most basic pleasures a parent feels—­that of being loved—­was completely unknown to her, even though the other young mothers in her circle took it for granted. Surely a child’s love for his mother was instinctive, the conventional order of things. And if Mary knew one thing about herself, it was that she’d always been most at home within the boundaries of the conventional, and had done surpassingly well there. That was not to say that she was average. She had been raised to get the best out of life, with the superb advantage of being born to one of Forest’s leading families, with more money and education than most of those around her. Not that there was much competition. Forest called itself a city, but really it had always been a small rural town. Even after knocking on every door in the community in 1930, census takers hadn’t been able to count more than 3,000 souls. True, there was a lively enough downtown—­a barbershop, a beauty salon, grocery and furniture stores, several churches, a courthouse, a railroad depot, and a public high school that served white children from Forest and surrounding towns. The dropout rate at the school, however, was always a problem, as it would remain far into the future throughout Mississippi, where poverty, illiteracy, and a shorter-­than-­average life expectancy were the state’s enduring triple curse. Despite the presence of two strong universities in Ole Miss and archrival Mississippi State, as well as a broad talent pool of doctors, lawyers, engineers, newspapermen, and some extraordinary artists and writers, there was a cultural and political inertia—­a resistance to progress, a preference for the traditional ways. Even when the civil rights movement finally reached Mississippi in the mid-­1960s, upending the status quo, the ferment came more slowly to Scott County, where Forest was located, and where “Negroes” generally had no opportunity to vote. As late as 1957, town elders pressed the Forest High School marching band to open a football game with “Dixie” instead of “The Star Spangled Banner,” which they described as the anthem of an oppressive new order. The school administration complied. Mary was born a McCravey, granddaughter to J. R. McCravey, a founder of the Bank of Forest, which still operates today. Conservative Presbyterians, the McCraveys had little incentive to upset the social order, but her parents did have more sophisticated aspirations than raising yet another mildly educated Southern belle. They pulled Mary out of public school to send her to a private Presbyterian girls’ school fifty miles away in Jackson. A few years later, still in Jackson, she enrolled in Belhaven College, a school for Christian women. She did well at Belhaven, where she was named business manager for the yearbook, elected senior class president, and awarded a bachelor’s degree in English. Graduate school was an option, but Mary chose to move directly into teaching, one of the careers most welcoming to the nation’s relatively few college-­educated women. She joined the English department of a public high school that prepared teenagers primarily for the farming life. The next stage for her, it was clear, would be marriage, followed by motherhood. For the time being, she would keep working, but as with any single woman her age in Forest, her proper ambition during this phase in her life—­which ideally should not run for too long—­was to be courted. She didn’t have long to wait. Though not beautiful, she had an appealing confidence; her wavy bobbed hair, modest jewelry, and simple dresses signaled that she felt comfortable in her skin. And then, of course, her family owned that bank. She had more than one suitor but settled finally for a local young man named Oliver Triplett. Known to everyone by his middle name, Beamon, he was the former mayor’s son. He was active with Boy Scouts and regularly taught Sunday school at the Presbyterian church, where his sister was the organist. The unusual thing about Beamon was that he had left home to go north to complete his law studies at Yale, then come home again to open a one-­man practice in a corner office above a storefront facing the county courthouse. Mary and Beamon exchanged vows on June 19, 1930. She was twenty-­five, and he was twenty-­seven. Donald was born a little more than three years later, on September 8, 1933. They sensed nothing amiss in the beginning, but then, they had no previous experience to go by. Physically, Donald was perfectly normal; he learned to sit up and walk according to the usual timetable, and even talked a little early. A weathered family album shows a small baby and then a toddler, who does, on occasion, look directly into the camera. In one shot, taken when he was probably not yet one, his gaze appears as intently focused forward as that of his grandfather, on whose right arm he perches. In another, in which he appears to be about two, Donald stands alone in the family garden, his body turned away from the camera, his hands occupied with some sort of toy vehicle. But his face and eyes are turned toward the camera, with a smile that seems aimed at the photographer, as though an instant earlier he had heard his name called, and was now glancing back over his shoulder to see who was there. The album shows the moments of connection becoming less frequent as Donald gets older. He smiles less, and a discomfort creeps in—­a discomfort in being held, or made to sit still, or compelled to look “natural” with the parents and aunts and grandparents who stand near him in billowing blouses, bow ties, straw hats, and suspenders. In nearly every frame, everyone grins big and focuses their attention on the camera—­everyone but Donald, who peers off in random directions, his bare arms and legs limp. Mary had to admit to herself that Donald was not “normal,” whatever normal meant. Neither, any longer, was Mary’s life as his mother. All her hours now belonged to Donald, even as he reached an age when children start to become more self-­sufficient. Well into his third year he still could not feed himself, so she was at his side at every meal, handing him the cup, raising the spoon to his mouth, cajoling him to eat. He had no common sense about danger, yet he grew ever more competent at putting himself into dangerous situations. He could figure out the latch on a second-­floor window, for example, or find his way outside and to the middle of the street, yet he was oblivious to the possibility that he might fall out the window or be mowed down by a car. He needed a guardian angel, and his mother filled the position, following him on his mysterious rounds from room to room during all his waking hours. This required an inexhaustible supply of energy, yet somehow Mary found new ways to keep trying to reverse whatever was wrong with him. She talked to him, although it was always a one-­way conversation. Yet she knew Donald must be hearing her, because he demonstrated an astounding gift for recalling what he had heard. She saw this in 1934 when, around Christmas, she started singing carols in the house. Suddenly Donald, only fifteen months old, began singing them too, word for word. Soon after, he memorized the twenty-­five questions and answers of the Presbyterian catechism. Mary also dedicated herself to learning her son’s many elaborate rituals. His extreme need for sameness made him violently inflexible about a series of routines of his own invention. Many of these were verbal, such as an incantation at breakfast every morning that went like this: “Say ‘Eat it or I won’t give you tomatoes, but if I don’t eat it I will give you tomatoes.’ ” It made no obvious sense, but that wasn’t important. If Mary didn’t say the words, exactly as instructed, Donald would scream, every muscle visibly strained in agony. Thus, Mary became his partner in this strange performance, taking on a series of roles that kept her perpetually by his side. In a world teeming with variables, she was the one constant in his life, reliably and relentlessly there. And so, as the three of them motored south that day on Mississippi 35, perhaps Mary let herself think that her presence next to Donald helped him relax. Perhaps, on a certain level, she was right. Inside the car, she represented the familiar. Everything outside would have hurtled at Donald in a raucous rush of unpredictability—­the very thing that rattled him most. The passing sights and sounds that would go unremarked upon by most of us—­the ugly belch of a tractor churning smoke in a field; a flapping mass of laundry on a clothesline; the unexpected sound of a car radio crackling from the window of an oncoming car; not to mention the rocking and rumble of the car he was in—­would have unfolded in a startling, spontaneous riot, faster than Donald’s mind could make sense of it. It’s easy to imagine him leaning into his mother’s side in the face of this onslaught, not necessarily to get her attention, but because she served as a constant in his life. She was the same as always, exactly how he needed things to be. But Donald was leaving her, and his father too. The three of them were headed to a little town called Sanatorium, Mississippi, to a facility known as the Preventorium, established in 1930. Located on a small rise, it was a curious statement of a building, unexpectedly handsome and bold among the pines. On its driveway side, six huge white columns supported a high roof, throwing shade over the steps and veranda. Inside, the Preventorium’s rooms and corridors were arranged to replicate the shape of a double crucifix. The Preventorium housed exclusively white children between the ages of four and eleven, up to fifty at any one time, each committed to the care of the state of Mississippi to reside, parents were promised, “under constant expert medical supervision.” In the most literal sense of the word, these kids were “institutionalized.” Their number would soon increase by one. Since Donald was still only three, the state would be making an exception in taking him, but that had been worked out in advance. Goodbyes at the Preventorium were managed briskly, with little time for clinging or tears. One child resident of that era, Cecile Snider, recalls that even her mother did not explain why she had been brought to this elegant dormitory that looked vaguely like a red-­walled Greek temple. Cecile was six and had followed her mother trustingly between the two huge white pillars that framed the entrance. Two hours later, when her mother left without her, Cecile did not quite comprehend that she was now on her own and would not see her mother for months. One of the nurses took possession of her prized Shirley Temple doll—­which she would never see again—­and directed her instead to the shelves of communal toys, games, and books. Another nurse took away the clothes and shoes she had worn from home. From then on, she would dress in short white bloomers and a white sleeveless top and go barefoot, like all the children at the Preventorium. This separation would haunt her well into adulthood. Donald, however, already appeared emotionally separated from his family and anyone else who happened to be around. He had a habit, any time he entered a new setting, of ignoring any people present and making straight for whatever inanimate objects might catch his eye: paper clips or seat cushions or an ashtray—­especially anything that could be set spinning. Wholly engaged by these new objects, Donald would have missed the mood of the moment, not seen the tension in his parents’ eyes as they knelt down for their final goodbye. If anything, he might have been slightly irritated by the interruption. Mary and Beamon watched the nurse take Donald by the hand and lead him down the hall, where there was a uniform waiting for him, still crisp from the laundry. Then they turned away, passing once again through the pillars out front, and headed for the car. There could not have been much to say on the long ride home. –This text refers to an out of print or unavailable edition of this title.

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.

⭐ 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.

⭐ 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.

⭐ 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.

⭐ Having an autistic son who is diagnosed as an Asperger’s I was very interested in this book and what it had to say of the spectrum. Many of the people talked about in the book I had read about or had read what they had written but it was good to read the comparisons of the different groups. It would be very helpful to all parents if there was one place where all of the information could be found instead being so disjointed.

⭐ 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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