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Summary
Summary
Finalist for the 2017 Pulitzer Prize in General Nonfiction
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 behavi∨ 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.
Author Notes
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."
Reviews (5)
Publisher's Weekly Review
Journalists Donvan and Zucker's tremendous study keeps autism at its center while telling an extraordinary tale of social change. The authors follow evolving cultural responses to autism and autism spectrum disorders, including intolerance, a desperate quest for successful treatments, and the currently high level of awareness-which doesn't always prevent misunderstanding. The only shaky aspects of this swooping narrative are Donvan and Zucker's questionable, if not anachronistic, attempts to diagnose historical figures. Their work's strength is a careful delineation of autism's contemporary ramifications, including the sometimes disputed statistics and the vaccine scare that first made headlines in the late 1990s. The authors give thoughtful consideration to the array of treatments for autism that have been explored; the 1960s, for example, saw a now-shocking trend of LSD treatments. 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. Agent: Alia Hanna Habib, McCormick Literary. (Jan.) © Copyright PWxyz, LLC. All rights reserved.
Booklist Review
Autism is a complex, challenging condition. Its history has been smudged by confusion and controversy. Donvan, a correspondent at ABC News, and Zucker, a TV producer with ABC and PBS and the mother of an autistic son, use stories of patients, parents, researchers, activists, physicians, psychologists, educators, and courtroom battles to illustrate how ways of thinking about autism have oscillated during the past 70 years. Many influential characters in the field are portrayed. Various treatments to address autism are chronicled. Earlier theories and remedies some cruel, outlandish, and even fraudulent are discredited, including the refrigerator mother, the MMR vaccine link, treatment with LSD, and punishment therapy that included electric shocks from a livestock prod. In 1988, autism awareness got a boost from Dustin Hoffman's performance in the film Rain Man. Presently, the American Psychiatric Association recognizes an all-embracing definition of the condition known as autistic spectrum disorder. Summing up, the authors write, Having autism being autistic represents but one more wrinkle in the fabric of humanity, and no one among us is living a life unwrinkled'. --Miksanek, Tony Copyright 2015 Booklist
New York Review of Books Review
THROUGH HISTORY, THE commandment to act with empathy has been more honored in the breach than in the observance. In their new book, John Donvan and Caren Zucker chart America's path to recognizing autism as part of the human condition, making a case that the arts as well as advocacy have been central to the process. The authors come from the world of television news - Donvan is a correspondent for ABC, and Zucker is a journalist and producer - and their book is crafted like a tightly edited news special: The prose is vivid, the tempo rapid and the perspective intimate, as if each character has been filmed with a hand-held camera. They depict history through biography, recounting the stories of individuals with autism and their families, physicians and psychologists - focusing on those who challenged traditional concepts of cognitive and behavioral debility and led the way to broader acceptance of autism. "In a Different Key" posits that the condition is not a new phenomenon. In 15th-century Russia, some autistic people were believed to be "holy fools," touched by God, and this divine connection conferred protected status. In early 1900s America, society largely aimed to purge rather than protect "mentally defective" people. The eugenics movement was embraced by prominent doctors and biologists as well as social advocates like Margaret Sanger and political leaders like Theodore Roosevelt. "Defective" people were to be relegated to institutions and prevented from procreating by sterilization; mercy killing was even proposed in The American Journal of Psychiatry. In 1933, as eugenics was peaking in popularity, Donald Triplett, the first child to receive a diagnosis of autism in America, was born to an educated Mississippi couple. He had a distinctly different way of speaking, substituting "hexagon" for the number six, and using "you" to indicate "I" and vice versa. More mysterious, however, was his emotional life: "Donald showed scant interest in the inhabitants of the outside world, and that included his parents," Donvan and Zucker write. But "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. ... He would not tolerate even the slightest changes to his physical surroundings." After more than a year of institutionalization with no discernible improvement, Donald was brought to Dr. Leo Kanner at Johns Hopkins. Kanner observed Donald but did not immediately come to a diagnosis, nor would he for the next few years. In 1943, however, he published a seminal article titled "Autistic Disturbances of Affective Contact" describing 11 such children; Donald was Case 1. Kanner was the first to identify autism in America, and he believed it was present from birth - but found maternal coldness to blame, as did others, notably Bruno Bettelheim, director of the University of Chicago's Sonia Shankman Orthogenic School, a "laboratory for developing new methods in the treatment of disturbed children." The authors eviscerate Bettelheim as a "prolific embellisher of the truth," who used the appellation "doctor" without being a licensed physician (he held a doctorate in art history). He wrote of an autistic child named Marcia obsessed with the weather, and claimed he unraveled the meaning of her obsession by breaking the word into three smaller words "we/eat/her." The girl's fixation grew out of a deep fear that her mother "intended to devour her," Bettelheim explained, but with treatment, she was "well underway to complete recovery." He described the mother of another autistic child, saying, "To be nursed by her is like being poisoned." Blaming the mother for the child's difficulties became more popular after Kanner's report, not only in clinical journals but also in the lay press. Bettelheim escalated the rhetoric, comparing the children to prisoners in concentration camps, and their mothers, by analogy, to Nazi camp guards. The idea of the toxic mother did not sit well with Ruth Sullivan, a former Army nurse whose son Joe had autism. She took Joe to see specialists trained by Kanner in 1963, but rejected "the thought that she had made Joe autistic - not then, or ever." Her family could serve as "an experiment with a ready-made control group," Donvan and Zucker write. She had seven children, "all loved and mothered in the same way, but only one had autism." Sullivan would go on to become "the doyenne of autism activists" and a prominent member of the National Society for Autistic Children, which connected families nationwide. At pivotal points in the book, the prose grows overheated. "It was time to lead a charge against the status quo and to do it as a mother, even if being one robbed her of credibility in the eyes of professionals," the authors write of Sullivan. "She believed in the power of large numbers, the potential for a group of women to force change." Sullivan, of course, was not living in a vacuum. Her challenge to the conventional wisdom about autism needs to be placed in the context of the time, in the '60s, and as part of a wave of disenfranchised groups questioning authority and demanding society shift from discrimination to tolerance, if not acceptance. The civil rights movement asserted that people of color deserved a place at the table, literally and by law; feminism brought women to the fore in the workplace and in politics. Breast cancer advocates began to push surgeons to adopt the less disfiguring but equally beneficial lumpectomy instead of the radical mastectomy, and sought to influence how funding was channeled from the government for research. Two decades later, the playbook of feminist health advocacy gave a blueprint to gay activists in the wake of the AIDS epidemic as they confronted drug companies and the government. Unfortunately, such context is absent from the narrative; no direct links are drawn to feminism, gay rights or AIDS. This omission makes the story incomplete. We are shown what happened, who made it happen, but never why. However, the authors do devote much space to how film and television increased awareness of autism. The authors highlight the movie "Rain Man" (1988), which first introduced autism to the general public and made an immediate impact. "All over the United States and Britain, anyone with an intimate connection to autism suddenly began getting questions," Donvan and Zucker write. "They came from friends and family, and, in many cases, from reporters, all of whom were newly curious about this fascinating condition they had never given much thought to, or even heard of, before seeing the movie." The film was not perfect, the authors allow, but it was "the first movie to get autism right, and to reach so many people while doing so." Some two decades later, the HBO biopic about the writer and animal scientist Temple Grandin, a "real-life celebrity with autism," portrayed by Claire Danes, would "carry the message even further," depicting the unique contributions of people on what is now called the autism spectrum. AS THE BOOK approaches the present day, Donvan and Zucker address the dangerous detour taken by prominent advocacy groups about the causes of autism. A deeply reported chapter features Bob Wright, the former chief executive of NBC, who became involved in autism advocacy after his grandson received a diagnosis. Wright believed that there needed to be "a big tent" effort to ultimately understand autism. He founded a nonprofit, Autism Speaks, in 2005, which enjoyed great success until it became "entangled" in the work of Andrew Wakefield, the British gastroenterologist, who tied development of autism to the MMR vaccine in an article in The Lancet in 1998. His report was soon discredited, and the article retracted. Alas, this research, shown to be severely flawed, is still cited by opponents of childhood vaccination. Autism Speaks tried to remain neutral in the "debate" but gave a voice to anti-vaccination activists, one of whom was Wright's daughter. While championing the "proven benefits" of vaccination, it also promised to investigate whether vaccines were dangerous. "Attempting to bridge the chasm between two polarized constituencies, the organization had been forced into rhetorical somersaults," Donvan and Zucker write, and it never regained its former prominence after the controversy. The book concludes with a vignette. In 2007, an autistic teenager on a bus in New Jersey began to be harassed by two men. "What's your problem, man?" one asked, referring to the teenager's repetitive movements. Just as the atmosphere was growing more tense, a passenger confronted the bullies. "What's his problem?" he said to them. "He's got autism. So what's your problem? How about you shut up?" Understanding moves us to silence cruelty. "It happened on a bus in New Jersey," the authors write. "It can be that way anywhere." In early 1900s America, society largely aimed to purge rather than protect autistic people. JEROME GROOPMAN is the Recanati professor of medicine at Harvard and a co-author, with Pamela Hartzband, of "Your Medical Mind: How to Decide What Is Right for You."
Kirkus Review
How autism has been transformed over the past century into "a threat that stalk[s] the nation," giving pause to prospective parents. ABC correspondent Donvan and ABC TV news producer Zucker have covered autism since 2000, when they created the TV series Echoes of Autism. They begin their chronicle in the mid-1930s, when the parents of Donald Triplett consulted with Leo Kanner, head of the Child Psychiatry Department at Johns Hopkins University. They hoped to find help dealing with their 5-year-old son's strange behavior. At that time, the doctor coined the name autism to describe Donald's affliction. Kanner was fascinated by Donald's cluster of symptoms, but he considered his condition to be untreatable and recommended placement in an institution. The authors explain that until the 1960s, it was still the norm to place children with epilepsy, cerebral palsy, autism, and other intellectual disabilities in what were, in effect, "human warehouses." To make matters worse, Kanner, in an opinion seconded by renowned child psychiatrist Bruno Bettelheim, attributed the condition to rejection by "refrigerator mothers," who failed to nurture their children. Parents who sought to keep their children at home were denied community support, and their children could not attend public schools. Ultimately, Donald's parents rejected Kanner's advice, and he graduated college and became a valued member of his community. In the 1970s, as an offshoot of the civil rights struggle, the rights of the disabled to education and other community services were finally recognized. Today, the definition of autism includes children with minimal language skills and highly verbal college graduates with poor interpersonal skills. How best to serve this diverse community is still hotly debated. 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." Copyright Kirkus Reviews, used with permission.
Library Journal Review
Donvan and Zucker begin with a review of the early isolationist approach to autism and move forward to today's heightened awareness of and strong support for cutting-edge research into new treatment options. The authors present the fascinating background to the story of the first child diagnosed with autism in 1941 and summarize the ongoing evolution of medical research into the disease. Key medical advances are highlighted, major courtroom challenges for necessary care and treatment are reviewed, and the darker side of the past shady experimentation with drugs and electric shock is explained. The authors also discuss the relatively recent controversy regarding the completely false, scientifically disproved, and dangerous claim that early childhood vaccinations "cause" autism. Kaleo Griffith's calm, comforting narration eases listeners through this comprehensive analysis. -VERDICT Recommended for all libraries and essential for university libraries supporting medical research and the helping professions. ["Parents of autistic children will recognize themselves in many of these stories but also learn more about the truth behind them. Autistic individuals will take away lessons to forgive the past and to recognize the vast spectrum of difference": LJ 3/1/16 starred review of the Crown hc.]-Dale -Farris, Groves, TX © Copyright 2016. Library Journals LLC, a wholly owned subsidiary of Media Source, Inc. No redistribution permitted.
Excerpts
Excerpts
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. Excerpted from In a Different Key: The Story of Autism by John Donvan, Caren Zucker All rights reserved by the original copyright owners. Excerpts are provided for display purposes only and may not be reproduced, reprinted or distributed without the written permission of the publisher.Table of Contents
Preface | p. xi |
Part I Autism's First Child (193Os-1960s) | |
1 Donald | p. 3 |
2 A Menace to Society | p. 13 |
3 Case 1 | p. 25 |
4 Wild Children and Holy Fools | p. 38 |
5 Doubly Loved and Protected | p. 52 |
6 Some Kind of Genius | p. 60 |
Part II The Blame Game (1960s-1980s) | |
7 The Refrigerator Mother | p. 73 |
8 Prisoner 15209 | p. 81 |
9 Kanner's Fault | p. 89 |
10 Biting Her Tongue | p. 95 |
11 Mothers-in-Arms | p. 105 |
12 The Agitator | p. 113 |
13 Home on a Monday Afternoon | p. 128 |
Part III The End of Institutions (1970s-1990s) | |
14 "Behind the Walls of the World's Indifference" | p. 147 |
15 The Right to Education | p. 158 |
16 Getting on the Bus | p. 165 |
17 Seeing the Ocean for the First Time | p. 182 |
Part IV Behavior, Analyzed (1950s-1990s) | |
18 The Behaviorist | p. 191 |
19 "Screams, Slaps, and Love" | p. 203 |
20 The Aversion to Aversives | p. 216 |
21 The "Anti-Bettelheim" | p. 224 |
22 47 Percent | p. 239 |
23 Look at Me | p. 247 |
24 From Courtroom to Classroom | p. 256 |
Part V The Questions Asked in London (1960s-1990s) | |
25 The Questions Asked | p. 273 |
26 Who Counts? | p. 281 |
27 Words Unstrung | p. 287 |
28 The Great Twin Chase | p. 292 |
29 Finding Their Marbles | p. 298 |
Part VI Redefining a Diagnosis (1970s-1990s) | |
30 The Autism Spectrum | p. 307 |
31 The Austrian | p. 316 |
32 The Signature | p. 327 |
Part VII Dreams and Boundaries (1980s-1990s) | |
33 The Dream of Language | p. 345 |
34 The Child Within | p. 353 |
35 An Elusive Definition | p. 370 |
36 Meeting of the Minds | p. 376 |
37 The Magic Man | p. 388 |
Part VIII How autism became famous (1980s-1990s) | |
38 Putting Autism on the Map | p. 403 |
39 Society's Emergency | p. 419 |
Part IX "Epidemic" (1990s-2010) | |
40 The Vaccine Scare | p. 439 |
41 Autism Speaks | p. 459 |
42 A Story Unravels | p. 471 |
43 The Greatest Fraud | p. 483 |
Part X Today | |
44 Finding a Voice | p. 497 |
45 Neurodiversity | p. 513 |
46 A Happy Man | p. 534 |
Epilogue | p. 547 |
Autism Timeline | p. 553 |
Notes | p. 563 |
Bibliography | p. 617 |
A Note from the Authors | p. 643 |
Acknowledgments | p. 645 |
Index | p. 653 |