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NeuroTribes: The Legacy of Autism and the Future of Neurodiversity Hardcover – August 25, 2015
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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."
“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-turner, Steve 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
About the Author
Steve Silberman has covered science and cultural affairs for WIRED and other national magazines for more than twenty years. His writing has appeared in The New Yorker, TIME, Nature, and Salon. He lives in San Francisco.
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Silberman’s book is rich in both human and scientific detail and shines in three aspects. Firstly, he meticulously traces the history of autism and the lives of the neurologists, psychologists and doctors who chased its elusive identity. He focuses especially on two psychologists, Leo Kanner in the United States and Hans Asperger in Nazi-controlled Vienna who identified the syndrome and pioneered its study through observations on hundreds of cases. Asperger was the first one to identify a variety of signs and symptoms that contribute to what we now call autism spectrum disorder, and his studies were expansive and nuanced. Silberman’s account of both the foibles and the triumphs of these two individuals is fascinating: while Kanner’s fault was in assigning the blame for autism to parents (he coined the phrase "refrigerator mother") and focusing on children, Asperger identified mostly high-functioning autistic savants in his publications for a chilling reason – so that the lower functioning cases could avoid the ghastly fate met by victims of the Nazis’ euthanasia program which aimed at eliminating “mentally feeble” individuals. Both Kenner and Asperger meant well, and in Asperger’s case his withholding of the identities of autistic people literally meant the difference between life and death.
And yet as Silberman so adeptly demonstrates, this was one of those cases where the intentions of humane and well-meaning researchers actually caused harm to public perceptions of the syndrome. Kanner and Asperger’s story is an instructive lesson in both the vagaries of scientific discovery and human nature and the sometimes unfortunate intersection of science with politics. The selective reporting of high-functioning patients in case of Asperger and children in case of Kanner led to a massive underreporting of autistic cases and the creation of a guilt complex among parents. It also led to a delay in the recognition of autism as a spectrum of disorders (Autism Spectrum Disorders) rather than a narrowly defined condition. It wasn't until 1981 that English researcher Lorna Wing finally publicized Asperger's wide ranging observations; and it wasn't until 1991 before German researcher Uta Frith finally translated his work.
Encouraged by Wing's work, when the diagnostic manual DSM-III-R finally classified autism as a widespread and bonafide syndrome with a textured and wide-ranging spread of symptoms and issues, Kanner and Asperger’s inadvertent underreporting of cases led everyone to believe that there was a sudden ‘epidemic’ of autism, a belief that triggered even more soul-searching and the assignment of cause and effect to all kinds of environmental variables including vaccines. Much of the media with its emphasis on sensationalism and simplistic explanations at the expense of subtlety and complexity did not help matters, although ironically as Silberman tells us, it was a movie - "Rainman" - that brought a lot of public attention to autism. It is in the second half of the book that Silberman sternly clamps down on fraudulent claims of connections between autism and vaccination, including the retracted work published by Andrew Wakefield.
Finally, Silberman’s detailed account draws up wonderful and sometimes very moving portraits of families and individuals affected by autism. Also included are capsule portraits of famous people with autism and Asperger's syndrome like Nikola Tesla and Temple Grandin. Silberman makes it clear that such people defy easy classification, and we do them and ourselves a disservice when we stereotype and bin them into discrete categories. He interviews hundreds of people who are stricken by the syndrome and tells us the stories of both adults and children who first struggled to cope with the disease and then found solace in meeting similar people and connecting with support networks. He also profiles families from a remarkably wide cross-section of society – from people living below the poverty line to wealthy California families - who are convinced by unverified connections between the environment and autism. Silberman does not agree with them, but he empathizes with their concerns and tries to understand them. Fortunately the stigma associated with autism spectrum disorders is gradually giving way to a more subtle understanding, but as Silberman indicates there is still a long way to go. As the title puts it, his plea is for a world that appreciates neurodiversity; the fact that even people regarded as psychologically different can have very important and valuable perspectives to offer.
If I had some minor gripes with the book, they were with the sometimes long-winded digressions on the lives of autism researchers and patients and the relative lack of discussion of cutting-edge biomedical and neurological research on the topic, including work from genomics and drug discovery. But these are minor gripes. Silberman has painted a rich, empathetic portrait of a devastating, baffling but ultimately comprehensible disorder and its history which we all owe ourselves to appreciate. Because ultimately, as the central message of this book reveals, the cure for autism is in understanding and empathy. The cure lies in human nature itself.
The story of autism is a long one. Autistic people have always been with us. I particularly enjoyed the stories of Cavendish, the Wizard of Clapham, and Paul Dirac. Both men exhibited autistic tendencies, but made significant contributions to science. High functioning people with autistic tendencies in the past were considered eccentric. Low functioning autistic people ended up in asylums.
The book covers Asperger's work with his “little professors” before the second world war, and the work of Kanner, a child psychiatrist, who suppressed the knowledge of the autism spectrum proposed by Asperger.
The frightening controversy over whether the MMR (measles, mumps and rubella) vaccine was responsible for pushing susceptible children into autism is covered in detail, as is the current “neurodiversity” movement. It also explains how the change in the Diagnostic and Statistical Manual's criteria for autism led to an expanded diagnosis that had the appearance of an epidemic.
If you have an interest in autism, or are working with an autistic child or adult, this is a must read book. It puts the history of autism in perspective and with the “neurodiversity” movement gives hope that with improved teaching and behavioral management skills autistic people may be able to recognize and use their talents.
I reviewed this book for Net Galley.