Neurotribes The legacy of autism and the future of neurodiversity

Steve Silberman

Book - 2015

"A groundbreaking book that upends conventional thinking about autism and suggests a broader model for acceptance, understanding, and full participation in society for people who think differently. What is autism: a devastating developmental disorder, a lifelong disability, or a naturally occurring form of cognitive difference akin to certain forms of genius? In truth, it is all of these things and more--and the future of our society depends on our understanding it. WIRED reporter Steve Silberman unearths the secret history of autism, long suppressed by the same clinicians who became famous for discovering it, and finds surprising answers to the crucial question of why the number of diagnoses has soared in recent years. Going back to... the earliest days of autism research and chronicling the brave and lonely journey of autistic people and their families through the decades, Silberman provides long-sought solutions to the autism puzzle, while mapping out a path for our society toward a more humane world in which people with learning differences and those who love them have access to the resources they need to live happier, healthier, more secure, and more meaningful lives. Along the way, he reveals the untold story of Hans Asperger, the father of Asperger's syndrome, whose "little professors" were targeted by the darkest social-engineering experiment in human history; exposes the covert campaign by child psychiatrist Leo Kanner to suppress knowledge of the autism spectrum for fifty years; and casts light on the growing movement of "neurodiversity" activists seeking respect, support, technological innovation, accommodations in the workplace and in education, and the right to self-determination for those with cognitive differences"--

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Subjects
Published
New York : Avery, an imprint of Penguin Random House [2015]
Language
English
Main Author
Steve Silberman (author)
Physical Description
534 pages ; 24 cm
Bibliography
Includes bibliographical references (pages 481-515) and index.
ISBN
9780399185618
9781583334676
  • Foreword
  • Introduction: Beyond the Geek Syndrome
  • 1. The Wizard of Clapham Common
  • 2. The Boy Who Loves Green Straws
  • 3. What Sister Viktorine Knew
  • 4. Fascinating Peculiarities
  • 5. The Invention of Toxic Parenting
  • 6. Princes of the Air
  • 7. Fighting the Monster
  • 8. Nature's Smudged Lines
  • 9. The Rain Man Effect
  • 10. Pandora's Box
  • 11. In Autistic Space
  • 12. Building the Enterprise: Designs for a Neurodiverse World
  • Epilogue: The Mayor of Kensington
  • Afterword
  • Acknowledgments
  • Notes
  • Index
Review by Choice Review

A respected freelance writer, Silberman provides a detailed, compassionate history of the research, politics, and culture surrounding autism. He begins with the stories of two researchers, Leo Kanner (1894-1981) and Hans Asperger (1906-80), independently working toward understanding a confusing childhood disorder under the shadow of the then-popular eugenics movement. He then puts autism in historical context starting in WW I and continuing into the present. Though written in readable, engaging, story-like prose, the book is not short on facts. Silberman describes the genesis of the variety of opinions on autism and autism treatments, and the diverging social movements that stem from them--prevention and cures versus acceptance and even celebration. The book is sympathetic to all views but does not fall into the trap of giving equal credence to unsubstantiated claims. This is a book for those new to the topic, those who work with people on the autism spectrum or are themselves on the spectrum, and those who want to make sense of the storm and strife surrounding the diagnosis. Summing Up: Essential. Lower- and upper-division undergraduates; professionals; general readers. --Kerry C. Michael, University of Minnesota - Morris

Copyright American Library Association, used with permission.
Review by New York Times Review

NEUROTRIBES: The Legacy of Autism and the Future of Neurodiversity, by Steve Silberman. (Avery, $19.) Two scientists - Leo Kanner in America and Hans Asperger in Vienna - independently identified autism. But while Asperger celebrated his subjects' differences, Kanner's placing of blame for the syndrome onto parents made his discovery "a source of shame and stigma for families worldwide." Had Asperger's attitude prevailed, autism may have had radically different connotations today, Silberman argues. THE AUTOMOBILE CLUB OF EGYPT, by Alaa AI Aswany. Translated by Russell Harris. (Vintage, $17.) In post-World War II Cairo, with Egypt headed toward revolution, Abd el-Aziz, newly bankrupt, has taken a menial job at a club for wealthy Europeans. After a confrontational episode at work, Abd el-Aziz is killed, leaving his children in desperate financial straits. The author, one of the Middle East's most popular, offers keen insight into midcentury Egypt's colonial tensions. PRIMATES OF PARK AVENUE: A Memoir, by Wednesday Martin. (Simon & Schuster, $16.) Martin, who has a background in cultural anthropology, details her bewildering and opulent journey to the culturally remote enclave of mothers on the Upper East Side of Manhattan. She is soon inducted into these women's ranks, but still sees reflections of Jane Good all's researches in this "honeyed and moneyed" environment. SWEET CARESS: The Many Lives of Amory Clay, by William Boyd. (Bloomsbury, $17.) The plucky, if improbable, heroine of Boyd's novel brushes off the societal norms that might have constrained her. Her birth announcement in 1908 mistakenly identified her as a boy, and her unhappy father tried to kill them both, yet she succeeds in building a life as a roving photographer. The novel is interspersed with photos meant to be Clay's work. INFESTED: How the Bed Bug Infiltrated Our Bedrooms and Took Over the World, by Brooke Borel. (University of Chicago, $16.) Human life has long been intertwined with these bloodsucking arthropods, which have survived centuries of attempts to stamp them out. After personal exposure to the resurgent pests, Borel, a science journalist, developed a grudging appreciation. MAKE YOUR HOME AMONG STRANGERS, by Jennine Capó Crucet. (Picador, $16.) This novel, a fictionalized account of the story of Elián González, follows a Cuban-American family in Miami. "With history onboard, Crucet shows us how journeys between cultures are almost impossible to navigate and family relationships are bound to dump us in choppy waters," Kathryn Ma wrote here. DAYS OF RAGE: America's Radical Underground, the FBI, and the Forgotten Age of Revolutionary Violence, by Bryan Burrough. (Penguin, $18.) An overview of insurgent groups active in the United States from the late 1960s into the 1980s, including the Black Liberation Army, the Weathermen and the Symbionese Liberation Army.

Copyright (c) The New York Times Company [September 11, 2016]

In a room on a high ridge overlooking the Santa Cruz Mountains in California, Leo Rosa is waking up. The sun breaks through a bank of coastal fog, filling his window with streaks of orange and crimson. A cherubic eleven-year-old with hazel eyes under a tuft of russet curls, he climbs out of bed to give his father a hug. Leo's father, Craig, produces science videos for KQED, a public TV station in San Francisco. Shannon Rosa is a blogger, editor, and software consultant. Each morning, they take turns helping their son get ready for school. The first thing that Leo does each day is read a list of icons taped to his door, which Shannon made for him by downloading and laminating clip art from the Internet. This list--his "visual schedule"--is written in a pictorial language that is easier for his mind to absorb than words. An image of a boy putting on his shoes prompts Leo to get dressed, followed by the likeness of a toothbrush, and then an icon of a boy making his bed. Leo's visual schedule parses the sprawling unpredictability of an eleven- year-old's life into a series of discrete and manageable events. This helps him regulate his anxiety, which is a challenge for people on the spectrum at every age.    In a cluttered room down the hall, Leo's sisters are also getting ready for the day. Zelly (short for Gisela, the name of Craig's aunt) already has the poised, self-possessed air of the thoughtful young woman she's becoming at thirteen. In a family of brazen eccentrics, she's taken on the job of being the "normal" one. India, who is five years younger, exudes her own potent brand of charisma, but it's more antic and subversive, with mischief and drama perpetually brewing in her bright green eyes behind thick glasses. While Zelly is generally reserved, India will walk right up to a stranger in a restaurant and say, "My, what a pretty dress you have!" She instinctively knows how to make herself the center of attention and work a crowd. While eating breakfast with his sisters in the kitchen, Leo suddenly jumps down from his chair as an alarming expression--between terror and exhilaration--takes possession of his face. He bolts for the door but his father doesn't flinch; instead, Craig calls after him in his softest voice, "Where ya goin', buddy?" Leo immediately sits down again and resumes eating as if nothing had happened. His first spoonful of yogurt this morning contains a crushed tablet of Risperdal, an atypical antipsychotic developed for the treatment of schizophrenia in adults. His parents don't like the idea of giving him this powerful drug, but for now, it seems to be helping him get a handle on his most distressing behavior, which is teasing and bullying India. Leo has never quite forgiven her for being an unexpected intrusion into a world that he was just getting used to himself. One of the downsides of the drug is that it amplifies Leo's already considerable appetite. His uncanny ability to snatch food from distant plates has earned him a family nickname: the Cobra. When Shannon brings bowls of oatmeal to the table, India quietly slides hers out of Cobra range and mutters under her breath, "This is mine." Suddenly Leo jumps up from the table again and says to his father, "Green straw?" It is not yet time for his first green straw of the day, but he will get one before the school bus pulls into the driveway--one of tens of thousands of wide, bright green Starbucks straws that Leo has used over the years for the purpose of stimming (self-stimulation), one of the things that autistic people do to regulate their anxiety. They also clearly enjoy it. When nonautistic people do it, it's called fidgeting and it's rarely considered pathological. A red straw from Burger King can occasionally fit the bill, or a blue one from Peet's. Clear straws from Costco just don't cut it. But a green straw from Starbucks is Leo's Platonic stim. If Shannon allowed him to do so, he would take a green straw to bed with him, or even better, a pair--one between his lips and the other in his toes. He would stim in the bath, on the toilet, and jumping on the trampoline. Leo's fascination with straws is a wonder to behold. First, he tears the coveted object free of its paper wrapper; then he wets his lips and starts nibbling along its length, palpating the stiff plastic to pliability; finally, he masticates it to a supple L-shaped curve. All the while, he's twiddling the far end in his fingers, making it dance with a finesse that would be considered virtuosic if he was performing sleight-of-hand tricks. Watching Leo's Ritual of Straws is like seeing one of W. C. Fields's vaudeville routines with a hat and cane run at hyperspeed. A few years ago, Shannon pulled the family minivan up to the entrance of Zelly's summer camp, when Leo, with his usual exquisite timing, made it known that he had to pee. There were no bathrooms in the vicinity, so Shannon escorted her son behind a convenient bush and urged him to do his business as India and her pal Katie pretended not to watch. She assured the girls that peeing on school grounds was tolerated under certain circumstances, and even kind of cool. "Sometimes, when you're a boy, it's great," she said. "You can pee in bushes all over the world!" "And sometimes, when you're a girl, you have a brother with autism," India shot back. "And then your whole world changes." Excerpted from NeuroTribes: The Legacy of Autism and the Future of Neurodiversity by Steve Silberman 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.