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Salon
Salon
Science
Matthew Rozsa

Autism ally Steve Silberman dead at 66

Steve Silberman was one of the greatest writers to ever put pen to paper about the subject of neurodiversity. Yet Silberman was not autistic; I learned this because, on the one occasion we had a conversation that made it to print, I accidentally claimed he was.

I erroneously believed that to be the case because, when Silberman wrote about neurodiversity for Wired, he wrote with a passion and authority that could not be denied. When Silberman explored the concerns of people who are neurologically different, he had the detailed knowledge of an expert — and the empathy of someone who has also walked the walk. This is why he is perhaps best known for authoring "NeuroTribes: The Legacy of Autism and the Future of Neurodiversity," a 500-page classic that is part detailed historical narrative, part scathing sociological critique. With "NeuroTribes," Silberman traced how society has attempted to diagnose and treat autism, as well as by extension other neurodivergent conditions. Yet instead of centering the doctors, parents and other "normal" people, Silberman kept the neurodivergent people themselves as the focus of his work.

In short, one can be forgiven for thinking he was autistic himself. He wrote like someone who literally lived as an autistic person.

At the time of this writing, all that is known for sure about Silberman's passing is that he died on Wednesday, August 29th, and that his surviving husband Keith hopes people will "remember his kindness, humor, wisdom and love." Silberman will also be remembered as one of hell of a writer. He studied under the legendary Beat poet Allen Ginsburg, who later became his good friend. After carving out a substantial career for himself as a journalist — for twenty years he was an editor and regular contributor at Wired — Silberman took an interest in the autistic community. He decided to use his platform to advocate for us, and when he did, he made it clear that we are a special interest group worthy of attention.

Take his analysis on how autistic people are able to unify to be proactive as a community — and why that is such an important development for humanity.

Most researchers now believe that autism is not a single unified entity but a cluster of underlying conditions. These conditions produce a distinctive constellation of behavior and needs that manifests in different ways at various stages of an individual’s development. Adequately addressing these needs requires a lifetime of support from parents, educators, and the community, as Asperger predicted back in 1938. He was equally prescient in insisting that the traits of autism are “not at all rare.” In fact, given current estimates of prevalence, autistic people constitute one of the largest minorities in the world. There are roughly as many people on the spectrum in America as there are Jews.

This is the right way to advocate for the disenfranchised. It stands in stark contrast to the supposed activism of Robert F. Kennedy, Jr., notorious anti-vaxxer and former third-party presidential candidate, whose career was the subject of my single published conversation with Silberman.

RFK Jr. "presents himself as an advocate for the disenfranchised following in the footsteps of his late father, but his lies about vaccines have the effect of reinforcing the oldest and most damaging stereotypes of the people that he claims to be defending," Silberman told me at the time. He particularly objected to RFK Jr. description of autistic people as "vaccine-injured," which is not only scientifically inaccurate but deeply insulting. In his mind, this was analogous to when RFK Jr. told talk show host Bill Maher that when he spoke to autistic people, "their brain is gone."

"Grotesque statements like this present people on the spectrum as entirely lacking in humanity, agency and the potential for development — as if they were zombies," Silberman explained. "He compares autistic people to Holocaust victims, which does a grave injustice to both autistic people and Jews. And even in apologizing for that comparison, he described autism as 'shattering' families, when some of the most loving and supportive families I know are the families of autistic people."

Characteristically, Silberman pivoted from talking about the powerful to thinking about the plight of the disempowered. "The main problem that autistic people and their families face is the lack of support and resources across the life span, but Kennedy condemns the 'crippling' cost of providing disabled students with access to education, using an ableist slur to complain about resources that were fought-for by generations of disabled people and their families," Silberman told Salon. He compared the popular myths about autistic people to the widely-debunked myths from history that led to "generations of autistic people who were often misdiagnosed with conditions like childhood schizophrenia, and subjected to cruel 'treatments' including lobotomies and brutal punishments for autistic behavior that included electric shocks."

This is the "kindness, humor, wisdom and love" described by Keith. It is why it is particularly fitting to close a tribute to Silberman by describing his writing with the same words he used to characterize the work of another great science writer, Dr. Oliver Sacks.

"In his writings about patients' sometimes bizarre case studies — which he would call 'neurological novels' — Sacks was able to draw out the humanity in pathology," Silberman wrote about Sacks. While Sacks specialized in actual diseases and other pathologies, Silberman also spoke for the wrongly pathologized... but with the same compassion and humanity that he admired in Sacks.

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