'Neurotribes' author Steve Silberman dead at 66

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Steve Silberman, a journalist who championed autism rights and wrote for the Grateful Dead, died Wednesday night. He was 66.

Silberman’s husband, Keith Karraker, announced the death Thursday in a post on Bluesky. The couple lived in San Francisco.

“It’s my very sad duty to inform you all that @stevesilberman.bsky.social, my wonderful husband and best friend, passed away last night,” Keith wrote. “I’ll have more info later. For now, please take a moment to remember his kindness, humor, wisdom, and love.”

Silberman was a longtime science journalist and author of the 2015 book “NeuroTribes: The Legacy of Autism and the Future of Neurodiversity.” His work appeared in many publications, including Wired, The New York Times, the New Yorker, and Scientific American. His TED Talk “The Forgotten History of Autism” has been viewed nearly 2 million times on the nonprofit’s website.

Silberman was also a diehard Grateful Dead fan who wrote liner notes for the Bay Area-born band’s albums, as well as the 1994 book “Skeleton Key: A Dictionary for Deadheads,” with fellow Deadhead David Shenk. Silberman went on to produce the Grateful Dead five-disc box set “So Many Roads (1965-1995)” and worked on liner notes for other box sets as recently as this year.

“My name is Steve Silberman, and I confess I lead a double life,” the author said in an interview on the “Dead Air Radio” program. Silberman described this “double life” as “interestingly weird,” saying his science writing “pays the rent,” while his Grateful Dead writing “certainly does not pay the rent but is fun and allows me to listen to a lot of music that I loved seeing when I was a kid.”

David Lemieux, the band’s official archivist and legacy manager, said in a statement posted to X that he met Silberman in 1999.

“He was so kind, warm, and welcoming to me every time we saw each other,” Lemieux said. “He was genuinely respectful. One of the brightest lights I’ve met over the past 25 years. His intelligence and generosity were unmatched. Steve, you will be missed by so many. Everyone who met you or corresponded with you loves you.”

Other journalists, authors, and Deadheads mourned Silberman on social media, remembering him as a mentor, a great journalist, and a “true mensch.”

Sara Kurchak "Steve Silberman was a writer for whom autistic people were never just a subject. We were his peers and his friends. Many autistic writers-including me-owe a great deal to his support. He will be missed so much"

Silberman’s book “The Taste of Salt,” a history of cystic fibrosis, is due to come out in 2025, according to his X profile.

In a Facebook post last August, Silberman left a message befitting this moment.

“When I die, please don’t say that I’ve crossed over into the spirit realm, gone to the Other Side, moved on to a better place, rejoined my ancestors, or any other of those comforting fables,” he wrote. “Just selfishly or selflessly use my own impermanence to WAKE UP to your own.”

I cant say i agreed with his book or what he was suggesting about the autism identity, i suspect his book was heavily influenced from his time in Silicon Valley & those with autistic traits he came across.

Critics would argue he never put things in perspective of a spectrum of disability in that he presented autism as a single condition of intelligent independent people with just social deficits, which of course it isn't for everyone.

However it would be churlish to not recognise that he was a big figure in the ND movement and he will be missed by his followers

RIP

While many people write about a community from the vantage point of an outsider, few can be credited with making the world a better place for that community. Silberman, whose death has left many of us truly devastated, was one of those few.

The science writer was also an expert on the Grateful Dead, the subject of his first (co-authored) book, and once worked as a teaching assistant for Allen Ginsberg.

“What connected his many interests was his affinity for underdogs and the misrepresented, whether it was the neurodivergent community, the gay community to which he proudly belonged, and, in a way, Deadheads,” Rolling Stone wrote in their eulogy.

‘A human community’
Silberman first became interested in autistic people when writing for Wired Magazine in 2001. “I came to it thinking I was going to study a disorder,” he told the Guardian. “But what I ended up finding was a civil-rights movement being born.”


His identity as a gay man influenced his approach to writing about autism as a “human community” rather than a “disorder”. He said: “My very being was defined as a form of mental illness in the diagnostic manual of disorders until 1974.”

That interest ballooned into NeuroTribes (2015), a 534-page book called “ambitious, meticulous and largehearted” by the New York Times and “sparklingly humane” by the Guardian and was translated into 15 languages. In 2015, it became the first popular science book to win the prestigious Samuel Johnson Prize for Nonfiction.

‘He treated us as humans’
I have admired Silberman since I heard him interviewed about NeuroTribes on ABC Radio National’s Life Matters in 2016. From the beginning, he impressed me by quoting autistic people in his answers.

While discussing the eugenic propaganda of the early 20th century that portrayed disabled people as economic burdens, he made a statement I will never forget, which sadly remains just as relevant today. He pointed out that people still use this language, particularly in relation to the NDIS, then continued:

You still hear about autism as this tremendous economic burden on society, and why should able-bodied people make these sacrifices so that these people whose lives are less worth living, allegedly, can continue to exist. This is a horrible thing!

Silberman said he “always” flinched to see media stories about autism presented primarily in terms of their cost to society, for example “an estimated fifty million dollars a year”. He asked: “what is the cost of a human life? It’s inestimable and no one knows what someone’s potential is going to be, particularly when that someone is a child.”

Silberman had respect for autistic people. He did not treat us as inert material for a book upon which to build his reputation and career. He treated us as humans he could learn from. He understood the gravity of his position as translator between a minority community and the society that often dehumanises and excludes them.

A masterclass in writing about a community
NeuroTribes is a masterclass in how to write about a community when you are an outsider.
First, Silberman began spending time with autistic people early in his research process rather than doing it at the end, or not at all. He told autistic website Wrong Planet he was “very very glad” he had attended Autreat, a conference run by autistic people for them and their friends, early in his research process.

It revealed many “illusions” he’d had about autism: “implanted by simply reading hundreds of medical case studies and medicalized books about autism and fear-mongering articles about autism and seeing autism through the lens of tragedy, horror, and fear”.

He described benefiting from being around autistic people “enjoying themselves in an environment customized for their sensory needs that had a lot of space in it so that people could engage other people at whatever level they felt comfortable with, including not engaging at all”. He said it was “one of the most completely liberating environments that I had ever been in”.

Taking time to understand
Secondly, Silberman took the time to understand the history of autism, rather than assuming medical definitions were static. He was able to show that autistic people had existed long before the medical diagnosis of “autism” was coined in 1938 by Hans Asperger (who actually used the term “autistic psychopaths”) and in 1943 by Leo Kanner.

He also showed that since then, autism’s causes and criteria have frequently fluctuated to suit the agenda of the medical professional discussing it. For example, he wrote that child psychiatrist Leo Kanner changed his mind several times about whether parents were to blame for their child’s autism.

Silberman also highlighted how some researchers targeted both gay people and autistic people with damaging theories. For example, American clinical psychologist Ole Ivar Lovaas had a significant role in both the controversial autism treatment applied behaviour analysis (ABA) and the 1974 Feminine Boy Project, designed to treat homosexuality.

Both aimed to train a child out of “deviant” behaviours, such as flapping hands or limp wrists. The children would often be “trained” for hours at a time, surrounded by adults who would reward or punish every move the child made. The child was not allowed to eat, except for the tiny pieces of food that rewarded correct behaviour. Punishment included adults slapping them or screaming at them, blasts of sound at over 100 decibels, and electric shocks.

Finally, Silberman popularised the concept of neurodiversity, which was created by the autistic community throughout the late nineties. Australian autistic sociologist Judy Singer also wrote an honours thesis on it in 1998.

The catalyst for the idea was biodiversity – the idea that nature’s strength comes from many different species, which each have their place in an ecosystem. Similarly, autistic people proposed, humanity advances together when it draws on the strength of many varieties of minds.

Wrong about Asperger, but admitted it
NeuroTribes is not without its faults. It frequently praises Hans Asperger for protecting autistic children from being murdered during the Third Reich, but this was untrue.

Hans Asperger’s active role in the murders of autistic and other disabled children was proved by Herwig Czech and then Edith Sheffer in 2018. Once their work was public, Silberman admitted he knew of suspicions regarding Asperger in 2011.

It is difficult to understand why he ignored these suspicions about Asperger. There might not have been much evidence against Asperger at that time, but there was not much evidence in his favour either.

As Silberman points out, Asperger’s 1938 public speech on autism did suggest: “Not everything that steps out of the line, and is thus ‘abnormal,’ must necessarily be ‘inferior’”. However, in the same speech he also said “autistic originality can be nonsensical, eccentric, and useless”.

Asperger also said autistic people “don’t have personal relationships with anyone”. In an atmosphere where everyone was expected to work together for the benefit of the Third Reich, and where being anti-social was a crime, these words alone made autistic children candidates for euthanasia.

Importantly, though, when Silberman’s characterisation of Asperger was disproved, he did not deny or defend it, or accuse the autistic community of being ungrateful. He acknowledged his mistake – and continued on with his significant support for the autistic community.

“Steve Silberman was a writer for whom autistic people were never just a subject. We were his peers and his friends,” wrote autistic author Sara Kurchak. “Many autistic writers – including me – owe a great deal to his support.”

Steve Silberman’s passing was a tectonic blow to the neurodiversity community in general, as well as to our community here at TPGA. Our editor Shannon Rosa recently spoke with Noncompliant podcast host Anne Borden King about Steve’s legacy. The transcript of the conversation follows; you can also listen to the audio version on streaming sites like Spotify or ApplePodcasts.