Neurotribes: The Legacy of Autism and the Future of Neurodiversity

An absolute treasure for anyone touched by Autism or neurodivergence. While it was very emotionally hard to read at times, (reading the history of how children with autism or other differences were treated) it was illuminating and encouraging. Steve Silberman truly advocates for people on the spectrum. This is a must read!

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.

Admittedly, I'm not very far into this book yet. I've made it to section V of chapter four. So far, the book has covered the author's experiences with autism that led him toward his reasearch into the subject. He briefly profiles some examples of autism as it exists in the 21st century, in particular following the story of one family's experience. He details their experience with various autism treatments, both traditional and alternative, and how their views on autism have changed as a result. He then delves into the history of autism, beginning with a profile of Henry Cavendish, A scientific pioneer known for his discovery of hydrogen, and for being the first to measure the density of the earth. This biography illustrates how Cavendish exhibited many traits that are now associated with high functioning autism. The author asserts that these traits are what drove him to achieve such success in his scientific career. Silberman goes on to cover Hans Asperger, his collegues, and their therapeutical work with children in the years leading up to the second world war. It describes the tragic events that occured in Nazi Germany, and how Nazi eugenics set back the study of mental illness. Next, the book covers Leo Kanner, another doctor who was doing his own work with mental patients. Both Kanner and Asperger observed patients who exhibited autistic behaviors, and though they were unaware of each other's work, they each coined phrase "autism" to describe the disorder. While Silberman accurately details this history, it's important to note that his personal bias colors his portrayal of these historical figures. He portrays Asperger as a tragic, almost heroic figure. While the author does desceibe Asperger's involvment in the Nazi regime, he does so with an apologetic tone. Asperger is framed as a Schindler-esque figure, using his position in Nazi society to try to help as many victims as possible. Conversely, Kanner is portrayed as an arrogant, error-prone fame seeker who would leave negative impacts on the practice of psychiatry. However, Silberman does not attempt to diminish the good that Kanner did for the field. He imported many revolutionary psychiatric practices from Europe, and while he had no formal training in the field, he was still more skilled than his American collegues. He clearly cared about his patients, and worked to better the conditions they faced in the asylums. Ultimately, Silberman is advocating for a decidedly pro-autism view - the views of the neurodiversity movement. NeuroTribes seeks to raise awareness for autism, but it also preaches tolerance for it, and acceptance of it. It frames autism as a civil rights issue as much as a medical one. Silberman's stance is clear, and while this bias is reflected in his writing, he effectively substantiates his reasoning and makes clear efforts to remain even handed in his represention of the issues. While he's critical of alternative treatments, he aknowledges that the shortcomings in medical science that leave desperate families to try to figure things out on their own. Although he praises Asperger for being the first to advocate for neurodiversity, he admits that he had to tacitly, and at times actively, condone Hitler's regime in order to continue his medical practice. Many of Kanner's shortcomings are also explained as consequences of that turbulent point in history. All in all, I'm finding NeuroTribes to be educational, emotional, and empowering. I was diagnosed with Asperger's Syndrome at the age of ten, and in the 15 years since, I've found it easy to lose hope. It's hard not to retreat into myself and avoid society. It's hard to accept my differences. I've learned to repress my emotions in order to appear more "normal." This book is a much needed reminder that Autistic people can thrive in this world. In the past, I've read books and heard lectures from Temple Grandin, John Elder Robison, and others that have sent this message. But unlike the personal accounts of these autistic icons who have found success in a confusing world, NeuroTribes tries to show autism's place in the world on a larger, more universal scale. Everything I've read in the past has shown that we can fit in, but Silberman is helping us find out how, and where.

[Disclosure: I am mentioned in this book] With a deft and gentle hand Steve Silberman has reconstructed the diaspora of autism. And it is a heartbreaking account of lost souls, misunderstood, reviled, shut down and shut away lives. Silberman has effectively proved that the people we see now, up and down the spectrum, have indeed always been here, but because there was so little understanding of what to do with the “feebleminded,” as they were called, the “useless eaters,” the sick and irrevocably strange and different were sent away to institutions or languished at home or worse. Anyone with even a little autism was thought to be mentally deranged, broken. There was no cultural belief in special education, no awareness of how human minds can be taught just about anything. There had to be an evolution, centuries, millenia-long, before people understood that these beings are every bit as human as the rest of society, and thereby able to learn, grow, adjust, work, and be part of Us. Silberman says, “In an eerie preview of the autism ‘epidemic’ to come four decades later, the prevalence of childhood schizophrenia started spiking in the midtwentieth century.” Just as we had an onslaught of people with ADHD when we first discovered it — and it became the diagnosis of the 90′s — just as bipolar is right now — childhood schizophrenia was one very popular explanation for people who were actually on the autism spectrum. That accounts for the deeply-involved, most disabled autistics. And these were the people whose families were educated and well-off enough to even know to bring them to the few psychiatrists in the country at that time. Silberman finds that French physician Edouard Seguin coined the term ‘idiot savant’ as far back as 1869. Seguin wrote,“It is from this class, almost exclusively, that we have musical, mathematical, architectural, and other varieties of the idiot savant; the useless protrusion of a single faculty, accompanied by a woeful general impotence.” The real hero in the book, Hans Asperger, though practicing in the early 20th century, put this in a humane, 21st century light: “Autistic children have the ability to see things and events around them from a new point of view, which often shows surprising maturity. This ability, which remains throughout life, can in favorable cases lead to exceptional achievements which others may never attain. Abstraction ability, for instance, is a prerequisite for scientific endeavor. Indeed, we find numerous autistic individuals among distinguished scientists.” This was almost 100 years ago. This accounts for the Asperger types, the splinter skills. Think about it. A child who presented as odd, to the point of not being able to talk until he was around five, and then, after that, presented as so strange, so unaware of or unskilled around others — Temple Grandin comes to mind — with no precedent of what speech therapy, sensory integration therapy, etc., could achieve — the common thing was to give up on this child. So even the “higher-functioning” would have been put away. Yes, there were many many institutions back then. More than you realize. And what happened there? They likely became worse, thereby proving the doctors “right.” Crowded into rooms without pants on and hosed off when they defecated. Things like that. Some of these people of course ended up in jail. Some — well, it’s too horrible to contemplate what a cruel, ignorant family might have done. The Nazis exterminated the disabled first, before they got to the elderly or the Jews. No, we did not send our monsters to the gas chambers, but we did treat them abominably. They were mistakes, burdens, disgusting, useless, scary. Without education, and without understanding the potential of people with autism, it would have taken a remarkably unique person (like Hans Asperger) to feel anything but fear and shame. About Asperger, Silberman says, “He christened this distinctive cluster of aptitudes, skills, attitudes, and abilities autistic intelligence, making the bold suggestion that autistic people have played an unappreciated role in the evolution of culture: ‘It seems that for success in science and art, a dash of autism is essential. For success, the necessary ingredient may be an ability to turn away from the everyday world, from the simply practical, an ability to re-think a subject with originality so as to create in new untrodden ways.’ The autistics have always been here. We just did not see them, and if we did, God help them. Now we see them. They aren’t sent away, hidden, cast out. They are sent to school. They are trying to get work, any work, for at least minimum wage. The real Autism Tsunami? The real disaster? That we don’t have enough funding for all of these very different but very worthwhile people to live productively after high school. The real puzzle? When are we going to wake up, treasure difference, and learn from it?

My son, at the age of 31, last year was diagnosed with being on the Asperger's spectrum after a 5 hour evaluation by the Army. I was asked by the neuropsychiatrist if I had ever been told that he was on the spectrum. I said no, but he had been diagnosed with a learning disability while in school. He is very bright, but never had much in the way of friends growing up. Always social awkward. My husband and I knew he was 'different' and worked with several psychologist to get him integrated as much as possible. (Did not help that he had an abusive 4th grade teacher that we spent years trying to reverse those consequences). But through it all we let him know he was loved. As a nurse (with a nurse friend with a son who is lower on the Spectrum and not as functional) I was aware of Asperger's, but did not feel that related to my son. He works, went to college and got a degree and was in the Army (survived Iraq but with some PTSD - hence the eval). But once he got the diagnosis, I was really trying to understand the impact with him. He stated he felt relieved to understand finally why he was different. This book really opened my eyes. And made me understand why he could not get a better job. He has failed repeatedly at job interviews. I understand now, that some of those with Asperger's feel it is painful to look someone in the eye. And not know the socially acceptable response to a question asked (my son has a twisted sense of humor - but not appreciated during an interview.) However, he like many others have some unique skills when it comes to computers and being able to look for errors in code for example. He has been turned down for numerous jobs because he can't get through the front door. Not him alone, have had this issue according to the author. If HR personnel would read this book and see if the interview techniques they use are really a good way to get the right skills for the position they are looking for, you could fill a lot of the high tech jobs that are out there with qualified people. I highly recommend this book. It will change the way you think about others you meet in your day-to-day life.

I teach courses in disability studies at Davidson College, and I found this book amazing on several levels. First, it's just beautifully written, opening with the story of an eighteenth-century scientist and framing his story as an autism narrative. What that does, however, is suggest from the beginning the visionary and different quality of this book: it is about claiming a history for autism, and for autistic people as a community. It situates the history of autism within medical history, but also--and critically--within social history. And there is some critical history to be foregrounded, such as the idea that Hans Asperger's ideas laid an important basis for accepting autism as a kind of neurodiversity--itself an even more important notion when we remember, as Silberman reminds us, that Asperger was doing this against the tide of eugenicist thinking perpetrated by Nazism and used to justify genocide. Silberman's book interweaves stories of autistic people and their familiies throughout history, and empathetically but clearly shows why the emphasis on cure has had such damaging effects. Instead, his work encourages us to understand disability as difference, and autism as a source of creativity and neurodiversity that our modern world would be a different--and lesser--place without. It's important to note that he does not romanticize how difficult things can be for autistic people and caregivers. But as he points out, that has so much more to do with lack of social supports and resources than it does with the actual embodiments of autistic people. The emphasis on cure has cost us so much--what could an emphasis on embracing neurodiversity bring us as a society, instead? This is what we disability studies scholars call "disability gain," and this book invites us to imagine it beautifully. I found it moving, smart, engaging, sensitive, forthright, and a critical work of disability history and justice. It's refreshing to see a work that reminds us that disability is about human variation--not personal "tragedy"--and that cure is not always the ideal, despite our society's emphasis on normalcy.

This book tells the unvarnished history of autism and spectrum differences. At times, it is hard to read because of the horrible treatment of children and others with any "difference." It is absolutely eye opening to the history of this Neuro tribe community, of which I am one. I reached my sixties without knowing there were so many others who had struggled and suffered as I had. I love my mother and appreciate her more than can be imagined for how much she did for me as a child. She taught me to read before I was school age, and provided me with all the books I could devour. I was reading at adult level by age ten. I loved Sherlock Holmes and Agatha Christi, still do. She also provided me with crayons and pencils and stacks of Big Chief tablets to write and draw on to my hearts content. We were poor and had to survive with my extremely abusive dad. My mom was so brave and got us out of that situation finally when I was twelve. I was threatened with everything imaginable including being put into an institution if my mom did not go back to him. There were so many hard times with no money, no child support, but no matter how hard she worked to keep food on the table, there were always hours at the library and art supplies. My dad and others had convinced me that I was stupid and would never do anything worthwhile. School was torturous, so I quit and went to work to help my mom at fifteen. I continued my reading and artwork, and then married young to an older man that truly saw my potential. We were very much alike in a lot of ways, and I believe he was probably also on the spectrum. To sum it up, with all that he and my mom did for me, I succeeded in getting four college degrees, including a double master's. I am a bio-physical medical anthropologist, an ethnobotanist, an artist, and a writer. This book and the books by Temple Grandin have had a profound affect on me. I had a hard life, but I am haunted by those who suffered even more. I think this book should be in every library, and should be read by more than those involved with or part of the spectrum community. Much of the horror that happened to autistic persons also happened and still happens to other persons with differences or disabilities. We should all know the truth of how some view and treat those that are the tiniest bit different from the accepted norm.

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.

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.

Amazing book

Books about autism or autistic people that have been written by a non-autistic author are rarely worth being read. This book is one of the very rare exceptions to this rule. Steve Silberman explains well how many misconceptions about autism were established and how some of them have been able to persist across many decades, right into the present. However, the book does not stop there. It also introduces the concept of neurodiversity, which might well be the most important change in how we think about autism that has been introduced in the past decades, and it explains how neurodiversity is connected to and fits into the wider scheme of the disability rights movement. Most importantly, this book amplifies the voices of autistic people instead of only repeating the narratives established by so-called “autism experts”. While the perspective on the early history is inevitably dominated by citing such “experts”, the book also explores the first developments of self-advocacy and shows how these efforts have rightfully gained more traction over time. In summary, I can wholeheartedly recommend this book to everyone, whether they are autistic or allistic.

SILBERMAN, Steve, “Neurotribes - The Legacy of Autism and How to Think Smart About People Who Think Differently”, Allen & Unwin, 2015, USBN: 9781760113643, paperback, 590 pages 2015 may seem a long time ago (now 2026) but this book looks in detail at the way autism emerged, was misunderstood, understood, managed and developed. I came to it through my daughter, a specialist and increasing becoming an expert in neurodiversity and related issues. I saw the book, flicked through it at her home, dismissed it then felt guilty. I bought it the following day and have been immersed ever since. It is difficult to recall how autistic people were treated “in the beginning”, e.g. as carriers of a disease which had to be cured as its symptoms were anti-social behaviour, an inability to learn and so many other unusual traits. Now, a few decades later, much more is understood after decades of research and families dealing with their children at various points on the spectrum. Some people many still belief these children are just “naughty” but a more rational, understanding and caring approach has created ways into the thinking of autistic people. Silberman deals accessibly and comprehensively with the ways in which changes emerged and understanding began. Light bulb and milestone moments are all here. The label “autism” is still not simple to understand. Each individual has much in common with others and yet, are very different, individual and have to be understood in that way. Listing the chapter headings would be of no help, e.g. “Fascinating Peculiarities”, “Fighting the Monster”, but, in the context of the book, they make complete sense. This is a fascinating and informative text which should be on the shelf on anyone interested in this subject. Yes, many advances have been made since 2015, which may make the book a little dated but the history has not changed, the journey from a disease to a personality to be understood as part of humanities diversity.

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.