Neurotribes: The Legacy of Autism and the Future of Neurodiversity

[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?

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.

Neurotribes: The Legacy of Autism and How to Think Smarter About People Who Think Differently This book has got to be one of the most well researched and balanced explorations of autism I have ever come across. It is written more like a novel so it engages you at every turn of the page, with case study after case study. It explores the history of autism of how it was originally recognised and how it's diagnosis has changed over several decades - so it becomes obvious why far more people are diagnosed with autism now as compared to 30 years ago. It explores the different methods that have been used over the years to "treat" or approach autism as well as exploring the history of changing claims to its causes that range from bad parenting to vaccines and a whole load more. For me as a parent of 2 children on this spectrum, the exploration of a few examples of highly accomplished historic figures that displayed all the characteristics of what would be today diagnosed as being on the autistic spectrum, such as Henry Cavendish, gave a broader picture of the autistic story, especially when Cavendish lived way before the phrase autism was coined or MMR vaccines were used. There appears to be so many one-sided accounts relating to autism, that have a bias in one direction or another, but this book gives such a balanced overview and account. The exploration of the lives of parents of autistic children and the challenges that they face and the things they tried to deal with them has made me feel far less lost in my daily routines with my kids. I don't feel I need to blame vaccines or bad parenting. I feel far more awakened to the possibilities and the breadth of wonderfulness my children possess and feel armed with various levels of insight into ways in which I can support them in developing their natural talents and celebrating their differences. I am very thankful to Steve Silberman for putting so much research into a book and writing in such an accessible and engaging manner. This book is a must read for anyone interested in autism and even more so for parents or grandparent to kids that appear to be on the autistic spectrum.

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.

A Great read, which will open up realms of understanding we never knew possible, not just with regard to autists but also towards and among all human-folk in all our variant forms; and may it help us all to improve our sensibilities, attitudes & communicational skills in everyday life. Progressive thinkers, get this !

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.