Book review: “Neurotribes” recovers lost history of autism
Steve Silberman’s new book, “Neurotribes,” recounts his 15-year quest to understand “the legacy of autism.”
Fifteen years ago, Steve Silberman was hot on the investigative trail of a âmysterious riseâ in autism diagnoses in Californiaâs Silicon Valley. While writing for Wired magazine, he learned that one of Silicon Valleyâs most famous coders has an autistic child. Months later, he learned that the sister of one of Silicon Valleyâs most famous entrepreneurs also has an autistic child. Assuming the prevalence of autism was low, Silberman thought he had stumbled onto cause and effect.
Silbermanâs new book, âNeurotribes,â recounts his quest to understand, as the bookâs subtitle states, âthe legacy of autism and the future of neurodiversity.âUnraveling the legacy consumes the lionâs share of the bookâs 500 pages.
Writing in the style of historian Doris Kearns Goodwin, Silberman paints beautiful biographical portraits through prose. Henry Cavendish, Hugo Gernsback (nĂ©e: Gernsbacher), Hans Asperger, Leo Kanner, Bruno Bettelheim, Bernard Rimland and Lorna Wing each receive chapter-length portraits. Contemporary characters, including Temple Grandin, Jim Sinclair and Leo Rosa, are painted on smaller canvases. But the narrative strokes are just as detailed, reminiscent of the writing of Oliver Sacks, who penned the bookâs foreword.
Through his 15-year investigation, the fundamental principle Silberman learns is that autism is best viewed âas a lifelong disability that deserves support, rather than as a disease of children that can be cured.â Although this perspective seems like âa new and radical idea,â Silberman discovers that âit was the oldest idea in autism research. But it had been forgotten.â
Silberman also discovers that the Feminine Boy Project, led by O. Ivar Lovaas and George Rekers with the aim of making transgender children indistinguishable from their cisgender peers using Applied Behavioral Analysis, was funded by the Playboy Foundation, as well as the National Institutes of Health. Silberman learns that the original ending for the movie âRain Manâ had Raymond Babbitt leaving the institution to go live happily ever after with his brother.
Perhaps most profoundly, Silberman discovers that the intended conception of the autism spectrum by its founder, autism researcher Lorna Wing, was a bona fide spectrum, not a continuum.
Over time, Lorna lost her taste for the word continuum because it suggested an incremental gradient of severity, from least to most severe, while she was suggesting something more individualized, nuanced, and multidimensional. ⊠Ultimately she adopted the term autism spectrum. She liked the sound of it, which evoked pleasing images of rainbows.
It is unfortunate that the autism spectrum has come to mean precisely the opposite of what its founder intended. Common vernacular speaks of the autism spectrum as a linear continuum, with a high end thatâs desirable and a low end thatâs undesirable. Silberman himself tries to sidestep the stigmatizing terms, âhigh functioningâ and âlow functioningâ (not to mention the equally offensive ânot as high functioningâ). Such terms of gradation harken back to the eugenics era, during which, as Silberman notes, disabled personsâ disposability was also graded with terms such as âhigh-gradeâ and âlow-gradeâ imbecile.
It is ironic that when Lorna Wingâs concept of the autism spectrum finally made its way into the âDiagnostic and Statistical Manual of Mental Disordersâ (DSM-5), it did so in exactly the opposite way from how its founder intended. As Silbermanâs painstaking research and fascinating interviews tell us, Wing wanted to avoid an incremental gradient of severity. Unfortunately, the DSM-5 does just that.
As the example of the origin of the autism spectrum illustrates, Silbermanâs âNeurotribesâ is a historical tour-de-force that anyone interested in unraveling the legacy of autism is sure to enjoy.
Morton Ann GernsbacherisVilas Research Professor and the Sir Frederic C. Bartlett Professor of Psychology at the University of Wisconsin–Madison.
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