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Neurotribes: The Legacy of Autism and the Future of Neurodiversity, by Steve Silberman
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This New York Times–bestselling book 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 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, Silberman offers a gripping narrative of Leo Kanner and Hans Asperger, the research pioneers who defined the scope of autism in profoundly different ways; he then goes on to explore the game-changing concept of neurodiversity. NeuroTribes considers the idea that neurological differences such as autism, dyslexia, and ADHD are not errors of nature or products of the toxic modern world, but the result of natural variations in the human genome. This groundbreaking book will reshape our understanding of the history, meaning, function, and implications of neurodiversity in our world.
- Sales Rank: #6489 in Books
- Published on: 2016-08-23
- Released on: 2016-08-23
- Original language: English
- Number of items: 1
- Dimensions: 9.00" h x 1.40" w x 6.00" l, 1.46 pounds
- Binding: Paperback
- 560 pages
Most helpful customer reviews
136 of 143 people found the following review helpful.
A fascinating account; shines as both history and human-interest story
By Ash Jogalekar
Steve Silberman is a journalist and writer for WIRED magazine who has written many readable stories on medicine and human health. In this book he brings many years of reporting and training to delve upon one of the most prominent health issues of our time – autism.
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.
177 of 188 people found the following review helpful.
My Tribe
By Nellie Moore
I per-ordered this book a few months ago and last week also ordered the Kindle version. My kindle version was delivered promptly this morning and I've been reading it since. I have a paperback version that is on it's way to be delivered today so I can share a copy with my husband and my doctor. Thus far this book promises to be what I had hoped it would be, another opportunity to understand myself better, and an opportunity to help others understand those of us on the Spectrum. I was diagnosed with Asperger's last year at the age of 53. Finally, after all of these years, I continue to understand that I am not broken, or in need of repair, just simply different. Thank you Mr. Silberman for your dedication to this topic and for writing what promises to be a very helpful book for the Neurodiverse and Neurotypical world.
91 of 96 people found the following review helpful.
Re-writing the history of autism
By PMB
The narrative history of autism has been dominated by many professionals and academicians with strong biases and self-interests, often fiscally driven and promotional for particular "treatments", or by well-meaning parents whose experience is only with their child or particular treatments (important, but not wide-reaching). Finally, Neurotribes gives us a meticulously researched objective account that not only shatters many myths about "legends" in the field of autism (many of who have caused more damage than good), but one crafted with compassion and with the insights of people on the spectrum and their family members. Having been in the trenches for more than 40 years, I not only recognized but I knew or know many of the important figures profiled in this book, and Neurotribes is spot on in capturing their passion and significance. This book will re-write the history of autism, and only in the most positive ways.
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