Neurotribes by Steve Silberman, published by Avery, is available now.
A review of Steve Silberman’s ‘Neurotribes’
Roderick C •
Roderick C reviews Steve Silberman’s Neurotribes: the Legacy of Autism and How to Think Smarter About People Who Think Differently, finding a work rich in historical insight, but unfortunately lacking in political understanding.
Autism is not a very common subject for political discussion among the left. However, for a number of years there has been an ‘autistic rights movement’ led by autistic people (many of whom insist on calling themselves this rather than ‘people with autism’). In some ways more cultural than political, many in the movement seek to argue for their perspectives, their ways of thinking, feeling and living, to be seen as valid and to be accomodated by ‘neurotypical’ society. This movement is among the many facets of autism dealt with in Neurotribes, a new book by the American writer Steve Silberman.
Silberman already has a reputation among ‘the autism community’ as the author of ‘The Geek Syndrome‘, a 2001 article which analysed what seemed to be a surge of autism diagnoses in Silicon Valley. Silberman posited that the world of computer programming is a particularly friendly work environment for so-called ‘high functioning’ autistic people, and this is an idea that has since become increasingly popular.
His background is an interesting one in itself: the author is a gay man who studied with Allan Ginsberg at Naropa University, a Buddhist-inspired private university in Boulder, Colorado. He has written extensively for Wired magazine, where he has been an editor and contributor for 14 years. Neurotribes is his most significant work to date, and was awarded the Samuel Johnson Prize in 2015.
The book is designed to be a history of autism and as such is a first class introduction to the subject. It gives a comprehensive overview of how autism was discovered and how views of autism within the medical and psychological professions have changed over time, as well as looking at activism by parents’ groups and latterly by autistic individuals themselves. The book has a strong focus on America, although this is not exclusive, and is in itself inevitable considering the author’s nationality.
Silberman highlights how autism was discovered separately by two Austrian psychologists – Hans Asperger, after whom Aspergers’ Syndrome was named, and Gustav Kanner, who lived and worked in the US. Aspergers’ work was lost in allied bombing raids during World War Two, and Silberman demonstrates what a disaster this was. Asperger, who nicknamed the more able of the children he worked with ‘the little professors’, was very clear that autism was a wide spectrum and contained wide variations in impairment and ability, often bringing strengths as well as deficits.
Kanner, by contrast, saw autism as very specific, affecting only a small number of children, and as always devastating in its effects. It is this view of autism that became dominant in the literature, only recently facing any significant challenge. Kanner is portrayed by Silberman as a deeply dishonest figure. He is shown facilitating the popularisation of Bruno Bettelheim’s ‘refrigerator mothers’ theory, which blamed autism on cold and unloving parents, and later, after that theory was discredited, as implying that he had never had anything to do with it.
Silberman spends substantial parts of the book charting the development of various campaigns by parents of autistic children. These include the National Society for Autistic Children (NSAC), set up by one parent, Ruth Sullivan, which sought to fight for better services for autistic children, and which later became the Autism Society of America.
It also looks at the work of those who believed in medical treatment and cure, rather than services, as being the best way to help autistic children. Bernie Rimland, who was initially a member of the NSAC, turned towards biomedical interventions and ended up championing the idea that there was an autism ‘epidemic’ due to vaccines. The behaviourist Ole Lovaas, meanwhile, looked to behaviour-based ‘training’ of children from a young age. His Applied Behavioural Analysis broke down the process of building ‘normal’ skills in autistic children, seeking to teach them step by step how to behave in ‘appropriate’ ways.
Silberman shows how fraudulent the former was, and how prone to abuse the latter was. Such efforts were all based on deeply disablist ideas of autistic children being incapable people who need to be made normal, but Silberman shows how both were also born as a reaction and in opposition to Kanner’s view that autistic children were incurable and ineducable and should be institutionalised for life.
A substantial section of the book is given over to the above mentioned autistic rights movement. Silberman describes how this movement was born out of autistic people meeting on the fringes of autism conferences and creating ‘autistic spaces’ together. Silberman describes the development of the movement, leading ultimately to the Autistic Self-Advocacy Network (ASAN) in the US, whose founder and director, Ari Ne’eman, now sits on Obama’s National Council on Disability. Focusing on the viewpoints of autistic activists is hugely welcome, although there are weaknesses in the uncritical praise given to ASAN, an essentially liberal lobbying group.
Another weak area is a long diversion into what looks like an attempt to prove, via potted biographies of a number of historical individuals, that much of modern technology and culture is down to autistic people. This is highly tendentious. Although the individuals talked about, such as Henry Cavendish, a famously reclusive scientific pioneer, or Hugo Gernsback, who popularised wireless radio and launched the first ever science fiction magazine, had personalities that could have fitted the autistic mould, none were ever diagnosed, and identifying them as such is inevitably speculative. Silberman’s focus on this is an attempt to prove the idea that autistic traits are beneficial to society, a premise that is impossible to prove either way.
However, the politics of the book are its single biggest weakness. Silberman is clearly no leftist, never mind a revolutionary. So, for instance, at no point does he seek to make any connection between the oppressive treatment autistic people have faced and the wider context of capitalist society. Nor does he relate autism to wider disability politics, for instance by seeking to apply the social model of disability to autism. Anyone looking for a manifesto for autistic rights and how autistic people can fight back will be disappointed. Such a radical perspective still remains to be developed.
Nonetheless, the book has to be seen overwhelmingly in positive terms for what it sets out to be – a straightforward history of the subject which takes a broadly optimistic view of the potential for autistic people to thrive in society, with the right mix of services, accommodation, and measures to ameliorate the more negative aspects. On that basis, this book is essential background reading for campaigners and anyone interested in finding out more about the subject.
2 comments
Thanks for this thoughtful review, rs21. Your points are well taken. I’m a bit confused by this, however:
“Silberman is clearly no leftist, never mind a revolutionary. So, for instance, at no point does he seek to make any connection between the oppressive treatment autistic people have faced and the wider context of capitalist society. Nor does he relate autism to wider disability politics, for instance by seeking to apply the social model of disability to autism.”
For the record, I am a leftist; but more importantly, I portray the autism rights movement very clearly as an outrgrowth of the social model of disability. In fact, it’s one of my main points, to wit, my anecdote on the coining of the term “neurodiversity” by Judy Singer:
“The turning point in Singer’s understanding was reading a book called ‘Disability: Whose Handicap?’ by Ann Shearer, a Jungian analyst in London who probed the ways that people with physical and cognitive differences are systematically disabled, excluded, and demonized by society. Singer wept as she read accounts of disabled people being brutalized over the centuries while acknowledging her own participation in such marginaliza- tion, even in her own family. Shearer observed, ‘Just how handicapping the limitations of disability become depends either on how well the environ- ment is adapted to the range of people who use it, or on the opportunities they have had to learn to cope with it, or both.'”
and on Ari Ne’eman’s radicalization:
“Struggling to make sense of what was happening to him, he got online, where he read Sinclair’s ‘Don’t Mourn for Us’ and other writings by the first wave of neurodiversity activists. He also began researching the history of the disability rights movement, because it struck him that many of his difficulties were not “symptoms” of his autism, but problems built into the ways that society treats people who don’t meet the standard expectations of “normal.”
He read about disability rights pioneers like Ed Roberts, who contracted polio as a teenager in 1953. Paralyzed from the neck down, he had to sleep in an iron lung. He was accepted into UC Berkeley over the objections of a dean who told him, “We’ve tried cripples before and it doesn’t work.” The school administrators eventually consented to allowing Roberts to move his iron lung into a wing of Cowell Hospital, where a dozen other quadri- plegics eventually took up residence, christening themselves “the Rolling Quads”—the first on-campus self-advocacy group for disabled students. The advocacy work of Roberts and the Rolling Quads became the founda- tion of the independent living movement, based on the principles that the real disability experts are people with disabilities, because they can offer practical guidance to their peers.
Ne’eman was also inspired by the story of another polio survivor, Judy Heumann, who successfully sued the New York City Board of Education after it denied her a teaching certificate by claiming that she would not be able to shepherd her students out of a building in case of fire. She founded a self-advocacy group called Disabled in Action, one of the key organiza- tions that mounted public protests to pressure President Nixon into signing the Rehabilitation Act of 1973, the seminal law that banned discrimination on the basis of disability in programs conducted by federal agencies or re- ceiving federal funding, and in employment by federal contractors. The act became the model for dozens of civil rights laws worldwide, including the Americans with Disabilities Act passed by Congress in 1990. Under Presi- dent Obama, Heumann serves as the State Department’s special envoy for disability rights.
To Ne’eman, people like Roberts and Heumann were clearly national heroes of the stature of Martin Luther King Jr., but he felt that there was a strange disconnect between the autistic community and the broader dis- ability rights movement. Outside of a few references to Deaf culture in the early ANI literature, autism was still discussed almost exclusively in medi- cal rather than social terms. This was particularly true at the height of the Autism Wars, when virtually all the media coverage revolved around the vaccine controversy.
“I reached out to find writing about the neurodiversity movement in large part because I felt what was happening to me was wrong, but I didn’t have a framework for understanding why, or what ‘right’ might be,” Ne’eman recalls. “I always felt that these things were wrong—not just for me, but for a lot of people. And I didn’t just want to get out, I wanted to end the fact that there was an ‘in.’”
So, as you can say, I was quite keen on framing the autism rights movement in light of the larger disability rights movement. In any case, thanks again for the review.
Hi Rodney,
You may be interested in my original thesis which I have now republished on Kindle. I believe I laid out the first outline of a feminist, social constructionist model for the rise of the new neurological disorders especially autism. This was a category that the Disabilty Rights movement had no idea about at that time. The word “neurodiversity” was just one idea in my work. Being an Australian, I was closer to British theorists with their more Socialist angle, but I made a synthesis of the ideas of British and American theorists. In the end I was critical of a tendancy to social constructionist fundamentalism, which IMO did not prove adequate to describing this new category of disability. You can find my thesis at Kindle as “NeuroDiversity: The Birth of an Idea”. The reason I am publishing it commercially is that I am being quoted in Europe, North and South America, and it felt like to time to speak for myself. Steve Silberman has done a great job, but as I suggested in my thesis, Americans don’t fully get the British-based “social model.