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?

The author, Steve Silberman, is a reporter who has written a meticulous history of autism, from earliest clinical observations in the 1930's to the present. His writing style, even though he presents a vast collection of material, keeps a reader engaged and entertained. He has documented efforts to search for possible causes or cures, personal case histories of families and autistic children, the groups founded to advance the study of autism, and the present state of accomodations availabe to help autistic individuals adjust to a "normal" lifestyle. To a person with autism, "normal" people are the abnormal ones, because they often act in a manner that they find unpredictable or unreasonable. Silberman shows that autism is not a modern phenomenon, and is not a disease or even a deficit, but a result of differences in the "wiring," or neurodiversity, of human brains that has appeared in human cultures throughout history. Fascinating examples show individuals who were accepted as "eccentrics" or managed to work in isolation, and resulted in discoveries that dynamically advanced the progress of civilization. Hans Asberger was the first to conduct scientific studies of autistic individuals, in the Germany of the 1930's. If his conclusions had been universally adopted then, they could have saved half a century of wasted efforts (documented here) to combat autism. At the time Asberger stated, "Our therapeutic goal must be to teach the person how to bear their difficulties. Not to eliminate them for him, but to train the person to cope with special challenges with special strategies; to make the person aware not that they are ill, but that they are responsible for their lives." Asberger's theories, based on logic and experience, were tragically ignored and forgotten, casualties of presumed association with Hitler, Naziism and policies of eugenics. Only within the recent past has the validity of Asberger's conclusions been recognized and applied. Powerful groups persist in searching for causes of, or cures for, autism, but in this book neurodiversity is shown to be a valuable element that has advanced civilization. There is much fascinating material here, including applications of what has been learned, but it is interesting to note that the special gifts of many autistic individuals give them an advantage in the web-connected world of today. This is finally a civilization in which they can excel: they can communicate, share knowledge, and enjoy learning with their peers through machines, avoiding the discomforts of personal contact. Anyone who wants to better understand autism will find the most current and complete understanding of all its aspects in this book.

I thought this book was very educational. I also think it was written with great empathy and understanding of the many types/levels of autism. This book gives a great historical perspective to when humans began to discover and categorize the beginnings of autism in children. I found many chapters to be so sad regarding the history. Then as time progressed and the perspective grew wider in our culture, I found much hope and promise for the many people diagnosed with autism. This is a very good read. I recommend anyone interested in the spectrum of autism and/or psychology and social behavior to read this book now.

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 recently found out at age 31 that I am on the autism spectrum. I say "found out," but really, it was more like putting a word to something I'd known all my life: My neurological layout differs from that of almost everyone around me. I sense differently, and more intensely. Sound is louder, and I can hear higher pitches. Light is brighter. Smells are more intense. Due (I think) to their increased intensity, I process audio and visual stimuli more slowly, and it takes me longer to react. As a result, my short term, or "working," memory is terrible, but my long term memory seems to be better than average. I can sense the feelings of those around me, but not always understand why they feel they way they do. I do not usually know what others are thinking, nor do they know what I'm thinking. Others usually cannot sense my feelings, nor read my facial expressions. The same goes for body language. It's very rare that I meet someone broadcasting (and receiving) on the same wavelength. I am (and have always been) a huge bookworm, so my diagnostician suggested I look into some books on the subject of autism. I picked up NeuroTribes as a starting point. It was quite the page-turner! I tore through it in about three days. What this book is: - A history of autism, the clinical standards used to diagnose it, and its classification(s) - A qualitative look at the lives of individual autistic people and parents of autistic children - An overview of autistic contributions to science, technology, and culture throughout history (but especially in the Information Age) - Insight into the general neurotypical point-of-view regarding autistic people and autism - A roadmap to guide neurotypical understanding of autistic thought processes What this book is *not*: - A how-to guide on making autistic people more neurotypical, or even making us *appear* more neurotypical - A pity party for those neurotypicals who imagine it worse to live and work alongside autistic people than to actually deal with the effects of being autistic in a world not made for us - Eugenics propaganda If you want advice on making autistic people more "normal," or on reducing/removing our presence in the population, then this book is not for you. I should note here that the author of this book is *not* autistic, just very open-minded. If, however, you seek to understand the growing population of autistic people (much as we must seek constantly to understand neurotypicals), then I think you will find this an engaging and enlightening read. I know I did.

I’ve just finished reading “Neurotribes.” I’m a retired English professor known for analyzing poetry and reading it well aloud. I’ve published twenty-one books, ranging from literary criticism to poetry to photography to theology to sexology to instruction on playing jazz guitar, mandolin, and advanced baritone ukulele. I make music with people and have acquaintances there but almost no close friends. When I was 65 I was diagnosed with Autism (very high functioning). This diagnosis wouldn’t have been possible a few years earlier. When I was diagnosed, many quirks or eccentricities or annoying things about me fell into place, including why my wife found me disappointing or trying and left after twenty-five years. Registering my disability with my university let me force my college dean to stop bullying me for not being among the top rated teachers in the department—it seems I was too abrupt, enthusiastic, and sometimes intimidating to those not interested in learning. It explained why loud restaurants and cocktail parties would grow increasingly difficult as the minutes passed. Lots of my family for several generations show or showed symptoms. Lots of us have graduate degrees despite or because of our peculiarities, which have led to delight in arcane things and learning. I found this book fascinating and very helpful. However, I still don’t understand why it is called “NeuroTribes.”

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 is a page turning, edge of your seat history of the gradual "ah-ha!" moments (and gut wrenching setbacks) of the last 90 years struggle to recognize that not all brains work the same way. As a person with a decidedly "different" brain (I'm a 57 year old college professor who has wondered for years if some of my very odd learning deficits/abilities might somehow be related to Autism) I've been wanting to learn more on this topic for a while, and been rather put off by a lot of the online information and books I've previewed. Too often the other sources of information either assume a lot of familiarity with the topic, are "cure" fantasizing, or simply dull. In contrast this book weaves together stories of hundreds of interesting people from the inspiring, to comic to deplorable. Some of these "characters" from recent history manage, like real humans, to be a bit of all these things, in ways that show not only the author's humanistic understanding of the struggles of the autistic persons profiled, but of the various doctors and parents, who even when doing things now known to be "wrong" for their patients, are usually clearly, in their time, trying to do what they imagine to be right for their patients or children. Silberman gathers all these hundreds of stories together in a gripping style that pulls you into each individual story, while blending the experiences of each together in both the way it happens in life (a researcher you read about in one section, shows up years later, in another person's story) or in making connections of experience from a patient in 1930s Austria, to a patient in 1960s America. He takes all the threads of these sometimes harrowing stories and pulls them together, while meanwhile luring you onward towards the present understanding of these issues, and a hopeful hint of future improvements in embracing and understanding neurodiversity. I'm only half way through this book, and I'm already finding it useful in grasping things about many of my students, and most certainly about my self. I'm so hooked by this book, I didn't even wait to finish before writing this. I want to encourage anyone and everyone to read this book.