Neurotribes: The Legacy of Autism and the Future of Neurodiversity

This book made me cry, and deeply. It may be impossible to describe adequately why this book is so good, even as it is so to describe why people with autism are, without knowing us. Still, of all the books I've read on this topic, this is the best.Even though it is reasonably impossible to do so with any level of appropriateness to the depth of his accomplishment in the writing of this book, I must thank Steve Silberman for this highly compassionate and comprehensive account of the history of what in many ways could be said to be my own 'race'; a race even more invisible than Ralph Ellison's Invisible Man, since my race is not divided by any simplistic or obvious trait.In a world preoccupied with surfaces and mirrors, the race of people I belong to must be known only in compassion, by way of un-intrusive study, reflection and observation; indeed, we can only be known by the very qualities which we ourselves possess; to a degree scarcely known by the violence of various idealisms, divisive thinking and ever-quickening societal change.It is a history that is PROFOUNDLY moving in the way that a thing can only be once it is known that it exists at all, as if for the first time. It is as if centuries of human progress and profound insight has been revealed before me, by my own extended hands, and by my own extended consciousness, across time and space. Indeed, it is so moving because it is as if Silberman was allowing me to understand that I was Dirac and Cavendish reincarnated, having never heard of either before, and in his words and descriptions discovering a long lost family to which I belong; never having belonged before...Indeed, I also cried because it is astounding to hear stories of compassion and understanding extended to and revealed by my long-lost tribe members in the patient understandings of their teachers, doctors and parents; none of which I have experienced myself, since my family are entirely unaware of their own inherited Autism (and thus their lack of understanding both for themselves or me). I brought these facts up to them, only to have it largely denied.One particular scene described in the book about the caring of a family to show their child an advance preview of the experience of visiting the dentist will remain permanently etched in my mind, such is the gulf between the experience of compassion and caring described in this book and between this scene and my own personal experience.Throughout the book, the sheer beauty of what it is like to experience life in the ways I do is expressed in a way that validates the lives of all inward-focused people everywhere. Some, like Henry Cavendish, lived lives in profoundly positive circumstances (being wealthy and having a father who appropriately focused the mind of his son, to the lasting benefit of all), such that in Cavendish, one can see an example of what I think nearly all the Asperger's (this is certainly true of myself) tribe would (and do) strive for, given the chance. I am shocked to learn about examples of my fellow brothers-in-mind, and feel as though the hidden and mysterious history of the modern world has been shown to me in a map of my own heart, written in the hands of Steve Silberman, a proxy for my long-dead brethren, and for myself.The service provided by such a history will ever be with me, now. I would hope that anyone with autism would read this deeply wonderful book, and I would hope anyone who is taking an idealistic stance against autism or regards people with autistic in such a violent way would read this book and know that you have to spend time getting to know us. We know you better than you can imagine, and we experience things more deeply than you can know.Nature abhors a vacuum, it is said, and by removing ourselves into quiet, consistent lives, we are able to reveal larger truths about the nature of the world around us. This is both a history of the traits of people doing this, and I believe could be an insight and a history into how truth itself is revealed to human beings in general.

I can’t remember the last time a book made me both scream with rage and sob happy tears. This is an amazing and comprehensive history of the neurodivergent community, both the people who hurt us and the people who helped us, and how we learned to advocate for ourselves. It was definitely an emotional read, and there were parts that were really hard to get through, but it was all worth it by the end. This is an easy read, it doesn’t use a lot of technical or medical terminology and it seems like it’s directed towards a general audience. It also does a really good job debunking some common myths about autism. I’m trying to get everyone I know to read this book.

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.

Um livro que todas as pessoas neurodivergentes ou não deveriam ler! Uma aula de história e um conforto para pais e para pessoas neurodivergentes que derruba mitos e esclarece potencialidades que infelizmente até hoje são subestimadas por pessoas que não conseguem enxergar além do preconceito. Super recomendo.

Felt like this a such an important book! Fascinating, insightful and well written.

A thorough and enlightening account of autism which busts jargon and rebuts conspiracy theories, although there is still progress to be made

This brilliant book brings to you stories of hope, cure and advancement of people with disabilities who were once just removed from societies because they were different. If there wasn't autism in the world, it would be full of accountants. Oh thank heavens that's not the case and we're reaping the benefits of arts, science and technology.

Cet auteur est le héros de la communauté autiste Asperger (dont je fais partie). Une approche d'avant-garde à saluer: l'autisme comme neurotype différent et non comme dysfonctionnement. Il serait temps que cette approche imprègne les soi-disants experts en France. Le livre est truffé d'exemples vivants de tous âges, l'auteur ne juge pas, ne projette pas ses préjugés neurotypiques, et le résultat est que son immersion dans notre culture l'a profondément changé.