Neurodiversity as a social and political movement is something that's only come to my attention fairly recently, through the lens of autism. Even six months ago I thought of autism in much the way that it was popularised in Rain Man and Little Man Tate: as a specific type of giftedness. The term Asperger's and the phrase 'on the spectrum' has entered the popular lexicon, but is stil often used in a euphemistic rather than a clarifying way.
I now have a much better understanding of what is at stake thanks to two books I've been reading the last few months: "Neurotribes", by David Silberman, and "Authoring Autism", by Melanie Yergeau.
In this blog post I will kick off with "Neurotribes", a wonderfully accessible introduction to the field. In the next blog post I will look at "Authoring Autism", which is a much more theoretical take - and also where things get really interesting.
"Neurotribes" tells the story of autism from the days before psychiatry and the medical establishment entered the fray. It contrasts the careers of socially awkward scientists like Henry Cavendish and Paul Dirac, who were likely to have been high functioning autists, with the fate of children under the psychiatric supervision of later diagnosticians like Leo Kanner. In the latter case the kids usually ended up in psychiatric wards.
It is a heartbreaking story, all the more so for the sensitive progress made in Vienna before the war years, until Hitler's policies tainted everything. Hans Asperger and his colleagues, including Sister Viktorine, constitute one of very few clinical teams to emerge with an enhanced reputation by the end of the book. Asperger afforded his charges dignity by not focusing solely on their disability, but by recognising their unique characteristics and potential, realising that they required different learning methods. He called them "little professors".
The reputations of later autism pioneers like Leo Kanner, Ivor Lovaas, and Bruno Bettelheim fare considerably worse. Through a combination of parental blame (Kanner and Bettelheim) and behaviourist normalisation (Lovaas) they ensured a fraught atmosphere in which the medical establishment inevitable became at odds with the families of autistic children. American psychiatry's narrow focus on the negatives and judging parents as complicit in their becoming autistic meant that families were left alienated and feeling disempowered.
The war years complicates the picture. There is plenty to suggest that Kanner's breakthroughs may not have come without the help of colleagues who immigrated and joined him from Asperger's Viennese clinic - including Sister Viktorine herself.
However the American establishment's belief in a top-down application of medical science over an empathetic, empowering approach meant that exasperated parents eventually started taking matters into their own hands. Bernard Rimland, who founded both the Autism Society of America (ASA) and the Autism Research Institute (ARI), was instrumental in shifting the balance more in favour of parents.
Parents were starting to realise that autistic children didn't need more therapy, à la Lovaas' horrifying behaviourist methods, but instead more recognition for the learning requirements of their children. Meanwhile Lorna Wing, over in the UK, rediscovered the work of Hans Asperger and saw that autism was more of a spectrum than the restricted version Kanner had postulated. Her influence on the expansion of the DSM diagnostic criteria meant that soon more children were being diagnosed than ever before, affording them the official educational assistance they needed. In DSM-V, the most recent version, autism has been redefined to include a much wider variety of related disorders under the bracket of Autism Spectrum Disorder (ASD).
"Neurotribes" also takes a look at the contribution made by "Rain Man", a film that did so much to bring autism to public consciousness. After reading Yergeau, however, it is clear that the next revolution properly starts when autistic people are finally empowered to speak for themselves, and be themselves. The precursor to this revolution comes in the form of an unlikely autism hero, Temple Grandin. Her story is heartwarming in a completely unexpected way, and I can definitely recommend the film version of her life in which Claire Danes stars as Grandin.
What makes Grandin's contribution unique is that, with the help and belief of her mother, she uses her own creativity and ingenuity to find a way to exist in the world that is in line with her autistic nature. The story of how she became an unlikely spokesperson for autism is now legendary, and it is easy to see how her story inspired many who never had a role model to look up to.
"Neurotribes" delineates a clear arc from extreme disempowerment to relative empowerment. This is an important realisation. We start with the pre-medical establishment, when inherited wealth and status in society (Henry Cavendish's parents were Lady Anne de Grey and Lord Charles Cavendish) is practically all that could save a handicapped child from a place like the Bethlem Royal Hospital (commonly known as Bedlam).
The next stage starts with the medical establishment's evolution of psychiatry, as early as Eugen Bleuler's designation of autism as a type of schizophrenia in 1911. However it is only during World War II that psychiatry finally provides autism with a more formal and independent diagnostic, albeit still under huge clouds of confusion and misunderstanding. In the following phase we see ordinary parents increasingly demanding better lives for their autistic children, and gradually taking control from the establishment authorities by forming their own societies like the ASA. Finally, autistic people themselves - people like Temple Grandin - begin to find ways to succeed on their own terms and make their voices heard.
In the internet era, Silberman further suggests, many people living with autism began to see ways of establishing community in the online world - ways that didn't rely on the usual types of stressful socialisation prevalent in "normal" society. In this empowering and interconnected world people with autism have increasingly found ways to assert themselves and make their voices heard. Neurodiversity, both as a social movement and as a part of wider identity politics, has now become part of a global conversation.
Against the backdrop of this brave new world Melanie Yergeau brings her theory rich thesis full of fresh and radical ideas. I discuss "Authoring Autism" in the next blog post.
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