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NeuroTribes: The Legacy of Autism and the Future of Neurodiversity (Anglais) Relié – 25 août 2015

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I STARTED READING every news story about autism I could find and downloading journal articles by the score. It soon became clear that the mysterious rise in diagnoses was not restricted to Silicon Valley. The same thing was happening all over the world.

To put the rising numbers in context, I familiarized myself with the basic time line of autism history, learning the story of how this baffling condition was first discovered in 1943 by a child psychiatrist named Leo Kanner, who noticed that eleven of his young patients seemed to inhabit private worlds, ignoring the people around them. They could amuse themselves for hours with little rituals like spinning pot lids on the floor, but they were panicked by the smallest changes in their environments, such as a chair or favorite toy being moved from its usual place without their knowledge. Some of these children were unable to speak, while others only repeated things they heard said around them or spoke of themselves detachedly in the third person. Claiming that their condition differed “markedly and uniquely” from anything previously reported in the clinical literature, Kanner named their condition autism—from the Greek word for self, autos—because they seemed happiest in isolation.

Then a year later, in an apparent synchronicity, a Viennese clinician named Hans Asperger discovered four young patients of his own who seemed strangely out of touch with other people, including their own parents. Unlike Kanner’s young patients in Baltimore, these children spoke in elaborate flowery sentences while displaying precocious abilities in science and math. Asperger affectionately dubbed them his “little professors.” He also called their condition autism, though it’s still a matter of dispute if what he saw in his clinic was the same syndrome that Kanner described.

For decades, estimates of the prevalence of autism had remained stable at just four or five children in ten thousand. But that number had started to snowball in the 1980s and 1990s, raising the frightening possibility that a generation of children was in the grips of an epidemic of unknown origin. After telling my editor about the frightening thing that the teacher in the café said about what was happening in Silicon Valley—the heart of Wired’s tech-savvy readership—I got permission to pursue this intriguing lead.

My research was facilitated by the fact that our apartment in San Francisco is located just down the hill from the University of California, which boasts one of the best medical libraries in the country. I became a regular browser in the stacks, poring through articles on epidemiology, pediatrics, psychology, genetics, toxicology, and other relevant subjects. Meanwhile, my shelves at home filled up with books like Clara Claiborne Park’s The Siege, Oliver Sacks’s An Anthropologist on Mars, and Temple Grandin’s Thinking in Pictures. Each offered a view of the diverse world of autism from a unique vantage point.

The Siege, published in 1967, was the first book-length account of raising an autistic child by a loving and devoted parent. In a dark age when psychiatrists falsely blamed “refrigerator mothers” for causing their children’s autism by providing them with inadequate nurturing, Park offered a candid portrait of life with her young daughter Jessy (called Elly in the book), who would sit by herself for hours, sifting sand through her fingers. With the meticulous eye of an explorer mapping uncharted territory, Park chronicled each small thing that Jessy learned to do in her first years, usually with great effort—only to apparently unlearn it shortly thereafter.

Lying in bed in the leisurely mornings the summer she was two, I listened to her pronounce her name. “El-ly,” she said. “El-ly”—laughing, chuckling, over and over again. The sounds, even the consonants, were exquisitely clear. I’m glad I got the chance to hear her. For a month or so she said it. Then she ceased completely. It was two years at least until she spoke her name again.

Sacks’s books examined autism from the point of view of a compassionate clinician, embodying the tradition of astute observers like Jean-Martin Charcot, the founder of modern neurology, and Alexander Luria, who wrote case histories of his patients so full of insight into the human condition that they read like novels. In nuanced portraits of autistic people like artist Stephen Wiltshire and industrial designer Temple Grandin, Sacks cast light on the challenges that they face in their day-to-day lives while paying tribute to the ways they bring the strengths of their atypical minds to their work. “No two people with autism are the same: its precise form or expression is different in every case,” he wrote. “Moreover, there may be a most intricate (and potentially creative) interaction between the autistic traits and the other qualities of the individual. So, while a single glance may suffice for clinical diagnosis, if we hope to understand the autistic individual, nothing less than a total biography will do.”

Thinking in Pictures was such a biography written from the inside. Grandin, who didn’t learn to speak until she was four, was initially misdiagnosed with brain damage—a common occurrence in the days when autism was still widely unknown even among medical professionals. Encouraged by her mother, Eustacia Cutler, and a supportive high school science teacher named Bill Carlock, Grandin developed her instinctive kinship with animals into a set of practical skills that enabled her to succeed in the demanding job of designing facilities for the livestock industry. Instead of the usual inspirational fable about an extraordinary person “triumphing” over a tragic medical condition, Thinking in Pictures was the story of how Grandin had come to regard her autism as both a disability and a gift—as “different, not less.”

Then my real reporting began. I interviewed an eleven-year-old boy named Nick who told me that he was building an imaginary universe on his computer. Chubby, rosy-cheeked, and precociously articulate, he informed me that he had already mapped out his first planet: an anvil-shaped world called Denthaim that was home to gnomes, gods, and a three-gendered race called the kiman. As he told me about the civilization he was creating on his desktop, he gazed up at the ceiling, humming fragments of a melody over and over. The music of his speech was pitched high, alternately poetic and pedantic, as if the soul of an Oxford don had been awkwardly reincarnated in the body of a boy. “I’m thinking of making magic a form of quantum physics, but I haven’t decided yet, actually,” he said. I liked him immediately.

But Nick’s mother broke down in tears as she told me that he didn’t have a single friend his own age. She recalled one terrible day when his classmates bribed him to wear a ridiculous outfit to school. Because autistic people struggle to make sense of social signals in real time, Nick didn’t realize that his schoolmates were setting him up for humiliation. I wondered what would become of this bright, imaginative, trusting boy as he got older and his peers became obsessed with social status and dating.

Other parents shared the ingenious strategies they developed to help their children learn to cope with a world full of unavoidable changes and surprises. A family event like a first trip on an airplane required months of careful planning and preparation. Marnin told me about the steps that he and his wife, Margo, an internist in the Bay Area, took to help their daughter Leah feel comfortable on her first visit to a new dentist. “We took pictures of the dentist’s office and the staff, and drove her past the office several times,” he said. “Our dentist scheduled us for the end of the day, when there were no other patients, and set goals with us. The goal of the first session was to have my daughter sit in the chair. The second session was so she could rehearse the steps involved in treatment without actually doing them. The dentist gave all of his equipment special names for her. Throughout this process, we used a large mirror so she could see exactly what was being done, and to ensure that there were no surprises.”

Like many parents, Marnin and Margo had become amateur autism researchers themselves, devoting hours of their precious alone time each week to poring through the latest studies and evaluating therapies that might be of help to Leah. I learned that it was not unusual for parents whose finances were already strained by the cost of behavioral interventions to have to walk away from careers they loved to effectively become case managers for their children, fielding teams of behavioral therapists while going into battle with school boards, regional centers, and insurance companies to ensure that their children got the education and services they deserve.

One of the hardest things about having a child with autism, parents told me, was struggling to maintain hope in the face of dire predictions from doctors, school administrators, and other professionals who were supposed to be on their side. When Leah was diagnosed, an autism specialist told Marnin, “There is very little difference between your daughter and an animal. We have no idea what she will be able to do in the future.” (At twenty-five, Leah is a bright, engaging, and affectionate young woman who remembers the names of every teacher and fellow student in her classes—going all the way back to preschool—and sings along with her favorite songs in perfect pitch.) In some ways, things hadn’t changed much since the era when Clara Claiborne Park and Eustacia Cutler were told to put their daughters in institutions and move on with their lives.

TO GET TO THE BOTTOM of what was happening in Silicon Valley, I asked Ron Huff of the California Department of Developmental Services to isolate the data from the agency’s regional centers in Santa Clara County from the data in other areas of the state. He confirmed that there was a disproportionately high demand for autism services in the cradle of the technology industry.

By the time I wrote my article, the notion that high-tech hot spots like Silicon Valley and Route 128 outside Boston were havens for brilliant, socially awkward programmers and engineers was becoming a cliché in popular culture. It was a familiar joke in the industry that many hard-core coders in IT strongholds like Intel, Adobe, and Silicon Graphics—coming to work early, leaving late, sucking down Big Gulps in their cubicles—were residing somewhere in Asperger’s domain. Kathryn Stewart, director of the Orion Academy, a high school for autistic kids in Moraga, California, said that she called Asperger’s syndrome “the engineers’ disorder.” In his popular novel Microserfs, Douglas Coupland quipped, “I think all tech people are slightly autistic.”

One possible explanation for a surge of autism in tech-centric communities like the Valley, UCLA neurogeneticist Dan Geschwind suggested to me, was that the culture of these places had opened up social possibilities for men and women on the spectrum that had never before existed in history. A speech-language pathologist named Michelle Garcia Winner told me that many parents in her practice became aware of their own autistic traits only in the wake of their child’s diagnosis. Temple Grandin observed in Thinking in Pictures, “Marriages work out best when two people with autism marry or when a person marries a handicapped or eccentric spouse . . . They are attracted because their intellects work on a similar wavelength.”

Attraction between people with similar genetic traits is called assortative mating. In 1997, cognitive psychologist Simon Baron-Cohen found that the fathers and grandfathers of children with autism were more likely to be engineers. Could assortative mating between men and women carrying the genes for autism be responsible for the rising number of diagnoses in the Valley?

My story exploring that hypothesis, “The Geek Syndrome,” was published in the December issue of Wired in 2001. The world was still reeling from the horror of the attacks on the World Trade Center and the Pentagon on September 11, but e-mail started pouring into my inbox even before the magazine officially hit the newsstands. I heard from parents who said that the article helped them feel less isolated from other parents facing the same challenges with their own children; from clinicians who saw the same dynamic at work in their own high-tech communities; and from readers who had been struggling in social situations for most of their lives without knowing why. This flood of responses was both inspiring and humbling.

I have a twelve-year-old son. He takes accelerated math and science courses. His hobby is memorizing facts and figures about civil and military aircraft dating back to WWI. He’s always had a fascination with clocks and watches. As you may have guessed, he has Asperger’s syndrome. I’ve always asked myself, “Why is my son the way he is?” No one has been able to give me a possible answer until I read your article. You see, my husband is an engineer. After reading your article, it felt like the pieces were falling into place . . .

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Your article sheds light on my original computer mentor. He could play four games of chess simultaneously and best all four opponents. He always knows what the total cost of the grocery shopping will be, including sales tax, before he enters the checkout line. But his son has trouble making eye contact . . .

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When I was five years old, I was taking my electronic toys apart to see how they worked. (I also attempted to put them back together, with mixed results.) I have always been a voracious reader. I was reading college-level physics books bought at garage sales in the second grade. I used to annoy my father to no end wanting to build scale models of nuclear reactors, submarines, trains, anything you could think of. I have only had very small groups of close friends. I always considered that odd but never knew how to go about correcting it. Quite frankly, I find most people quite annoying and illogical—probably another common Asperger trait. :)

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It is so important that the general public and the hiring companies understand this group of people. Many will fall through the cracks due to their “odd” behaviors. Many have so much to contribute if given the chance.

Thankfully I received only a few e-mails like this one:

Like many people, I’m starting to get fed up with the multiplication of psychological disorders such as attention deficit disorder and Asperger’s syndrome. In the old days, if you didn’t pay attention in class, you got whacked, and that usually did the trick for many youngsters.

I also got a call from a supervisor at Microsoft who told me, “All of my top debuggers have Asperger syndrome. They can hold hundreds of lines of code in their head as a visual image. They look for the flaws in the pattern, and that’s where the bugs are.”

At a conference a few months after my article came out, the grandmother of a young girl asked me to sign a copy of my article that had been photocopied so many times that I could barely make out the text.

Years passed, and I still got e-mail about “The Geek Syndrome” nearly every week. As time went on, though, I became convinced that by focusing on the dynamics of autism in one highly specialized community, I had missed a larger and more important story.

Revue de presse

Winner of the 2015 Samuel Johnson Prize for non-fiction

"Ambitious, meticulous and largehearted history...NeuroTribes is beautifully told, humanizing, important."
The New York Times Book Review

"Mr. Silberman has surely written the definitive book about [autism’s] past."
The Economist 

“A comprehensive history of the science and culture surrounding autism studies…an essential resource.” Nature magazine

NeuroTribes is a sweeping and penetrating history, presented with a rare sympathy and sensitivity. It is fascinating reading; it will change how you think of autism, and it belongs, alongside the works of Temple Grandin and Clara Claiborne Park, on the bookshelf of anyone interested in autism and the workings of the human brain.”
--From the foreword by Oliver Sacks, author of An Anthropologist On Mars and Awakenings

“Breathtaking… as emotionally resonant as any [book] this year." The Boston Globe

“A lively, readable book… To read NeuroTribes is to realize how much autistic people have enriched the scope of human knowledge and diversity, and how impoverished the world would be without them.” The San Francisco Chronicle

“It is a beautifully written and thoughtfully crafted book, a historical tour of autism, richly populated with fascinating and engaging characters, and a rallying call to respect difference.” – Science magazine
 
“Epic and often shocking…Everyone with an interest in the history of science and medicine — how it has failed us, surprised us and benefited us — should read this book.” –Chicago Tribune

“The best book you can read to understand autism" –Gizmodo

“Required reading for every parent, teacher, therapist, and person who wants to know more about autism” –Parents.com

"This is perhaps the most significant history of the discovery, changing conception and public reaction to autism we will see in a generation." –TASH.org

“A well-researched, readable report on the treatment of autism that explores its history and proposes significant changes for its future…In the foreword, Oliver Sacks writes that this 'sweeping and penetrating history…is fascinating reading' that 'will change how you think of autism.' No argument with that assessment." Kirkus Reviews
 
“The monks who inscribed beautiful manuscripts during the Middle Ages, Cavendish an 18th century scientist who explained electricity, and many of the geeks in Silicon Valley are all on the autism spectrum.  Silberman reviews the history of autism treatments from horrible blaming of parents to the modern positive neurodiversity movement.  Essential reading for anyone interested in psychology.”
--Temple Grandin, author of Thinking in Pictures and The Autistic Brain
 
NeuroTribes is remarkable. Silberman has done something unique: he’s taken the dense and detailed history of autism and turned the story into a genuine page-turner. The book is sure to stir considerable discussion.”
--John Elder Robison, Neurodiversity Scholar in Residence at The College of William & Mary and author of Look Me in the Eye
 
“This gripping and heroic tale is a brilliant addition to the history of autism.”
--Uta Frith, Emeritus Professor of Cognitive Development at University College London
 
“In this genuine page-turnerSteve Silberman reveals the untold history of autism: from persecution to parent-blaming, from Rain Man to vaccines, of doctors for whom professional ego trumped compassion, to forgotten heroes like Hans Asperger, unfairly tainted by Nazi links.  It ends on an optimistic note, with ‘autistics’ reclaiming the narrative and defining autism in their terms — more difference than disability and an essential part of the human condition. Highly recommended for anyone with an interest in autism or Asperger’s, or simply a fascination with what makes us tick.”
--Benison O’Reilly, co-author of The Australian Autism Handbook

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