Steve Silberman | |
|---|---|
 Silberman in 2016 | |
| Born | December 23, 1957 Ithaca, New York, U.S. |
| Died | August 29, 2024 (aged 66) San Francisco, California, U.S. |
| Alma mater | Oberlin College, University of California, Berkeley |
| Genre | Non-fiction |
| Notable work | Neurotribes |
| Notable awards | Kavli Science Journalism Award for Magazine Writing Samuel Johnson Prize |
| Spouse | Keith Karraker (m. 2003) |
| Website | |
| www | |
Stephen Louis Silberman (December 23, 1957 – August 29, 2024) was an American writer for Wired magazine and was an editor and contributor there for more than two decades. In 2010, Silberman was awarded the AAAS “Kavli Science Journalism Award for Magazine Writing.” His featured article, known as “The Placebo Problem”,[1] discussed the impact of placebos on the pharmaceutical industry.[2]
Silberman’s 2015 book Neurotribes, which discusses the autism rights and neurodiversity movements, was awarded the Samuel Johnson Prize. Additionally, Silberman’s Wired article “The Geek Syndrome”,[6] which focused on autism in Silicon Valley, has been referenced by many sources and has been described as a culturally significant article for the autism community.[7]
Silberman’s Twitter account made Time magazine’s list of the best Twitter feeds for the year 2011.
In 2016, he gave the keynote address at the United Nations on World Autism Awareness Day.
Biography
Silberman was born on December 23, 1957 in Ithaca, New York, the son of Donald and Leslie (née Hantman) Silberman, both English professors at Jersey City State College. He grew up in a Jewish family and described the Passover haggadah as being a “major influence” on his writing style. Silberman said that his parents were communists.
He studied psychology at Oberlin College in Oberlin, Ohio, then received a master’s degree in English literature from Berkeley, where his thesis advisor was Thom Gunn.
Silberman would later write about the Grateful Dead. He attended his first concert Grateful Dead concert in 1973 at Summer Jam at Watkins Glen. Silberman moved to San Francisco in 1979, drawn by three factors: so that he could live “a gay life without fear, because of the music of Crosby, Stills and Nash, the Grateful Dead, and others; and so he could be near the San Francisco Zen Center. He was friends with the musician David Crosby, with whom he hosted a podcast.
Silberman studied with Allen Ginsberg at Naropa University in 1977. After Silberman interviewed Ginsberg for Whole Earth Review in 1987 the two became friends and Ginsberg invited Silberman to be his teaching assistant the next term at Naropa University. The Beat Generation was a regular subject in Silberman’s writings and he considered poet Philip Whalen to be a hero. Silberman lived with his husband Keith Karraker, a high-school science teacher, to whom he had been married since 2003.
In 2019, Silberman started working on a new book, titled The Taste of Salt. According to Silberman the book was going to detail “the human stories behind one of the most impressive, but little-known, medical successes of our time: the transformation of cystic fibrosis from an inevitably fatal childhood disease to a chronic and manageable condition of adulthood.
Silberman died on August 29, 2024 at his home in San Francisco, from a suspected heart attack. He was 66.
NeuroTribes
Silberman’s 2015 book NeuroTribes documents the origins and history of autism from a neurodiversity viewpoint. The book has received mostly positive reviews from both scientific and popular media. In a review published in Science-Based Medicine, Harriet Hall describes Neurotribes as “the most complete history of autism I have seen” and recommends it as “a welcome ray of clarity, sanity, and optimism”. In The New York Times Book Review, Jennifer Senior wrote that the book was “beautifully told, humanizing, important”; the Boston Globe called it “as emotionally resonant as any [book] this year”; and in Science, the cognitive neuroscientist Francesca Happé wrote, “It is a beautifully written and thoughtfully crafted book, a historical tour of autism, richly populated with fascinating and engaging characters, and a rallying call to respect difference.” It was named one of the best books of 2015 by The New York Times, The Economist, Financial Times, The Guardian, and many other outlets. Anil Ananthaswamy described Silberman’s book in Literary Review as a “comprehensive, thoroughly researched and eminently readable” book about autism, which showcases Silberman’s strengths as a journalist: “the writing is crisp, clear and engaging.”
Some other reviews were less positive, for example James Harris of Johns Hopkins University criticized NeuroTribes as a book that pushes an agenda, saying that Silberman misrepresented Leo Kanner as somebody who had a negative view towards autistics and their parents, rather than, as Harris argued, an advocate for individualized treatment for every child.[32] An autistic autism researcher named Sam Fellowes has also attacked the book on the basis of a prochronism.
Silberman stated that a key point from the book is to recognize the need for accommodating autism as a significant disability in the same way that society accommodates wheelchair users.[35]
Awards
- 2015 Samuel Johnson Prize
- 2015 Books for a Better Life Psychology Award, Southern New York National Multiple Sclerosis Society[37]
- 2016 Health Book of the Year, Medical Journalists’ Association
- 2016 Silver Medal, Nonfiction, California Book Awards
- 2016 Erikson Institute Prize for Excellence in Mental Health Media[40]
- 2016 ARC Catalyst Awards Author of the Year[41]
Publications
Books
- Shenk, David; Silberman, Steve (1994). Skeleton Key: A Dictionary for Deadheads. New York: Main Street Books. ISBN 978-0-385-47402-3.
- Silberman, Steve (2015). NeuroTribes: The Legacy of Autism and the Future of Neurodiversity (1st ed.). Avery. ISBN 978-1-760-11363-6.
Selected articles
- Silberman, Steve (December 1, 2001). “The Geek Syndrome”. Wired. Condé Nast.
- Silberman, Steve (August 24, 2009). “Placebos Are Getting More Effective. Drugmakers Are Desperate to Know Why”. Wired. Condé Nast.
The Placebo Problem
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Steve Silberman, author of NeuroTribes, a groundbreaking history of autism that fundamentally changed how society understood autistic people, has died, aged 66.
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.
Autistic journalist Eric M. Garcia, a columnist for MSNBC and author of We’re Not Broken: Changing the Autism Conversation, wrote that he was “devastated” and “gutted” by Silberman’s death. “He changed my life. Without his work, I never would have come around to accepting myself.”
See Steve Silberman’s TED Talk on The forgotten history of autism was influential.
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.”
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Remembering NeuroTribes author Steve Silberman
Steve Silberman and Leo Rosa, 14, who he wrote about in his book NeuroTribes. Photo by Carlos Chavarría for this Guardian piece.
By Louise Kinross
I first corresponded with author Steve Silberman in 2013. He’d written a piece in WIRED about how the unique brain wiring of people with autism, ADHD and dyslexia has benefits. Steve, who later wrote NeuroTribes, a groundbreaking book on the history, nature and value of autism, died last week.
Back in 2013 I asked him if he thought intellectual disability fit in the neurodiversity fold and he said yes, but that he hadn’t written about it yet. Did I have any pointers? I wrote a piece about it.
Over the years, Steve and I retweeted each other’s stories. Although I was a non-disabled parent, he called me a disability activist. He always encouraged me in my writing.
I quoted him in BLOOM posts related to how we think about autism and disability.
For example, on parent blame: In a chapter of his book called The Invention of Toxic Parenting, he described how child psychiatrist Leo Kanner suggested that autistic children’s all-encompassing interests were a bid for affection from emotionally cold parents.
Steve noted there was a political agenda for blaming parents for their child’s autism. “A condition that was inborn could not be prevented—it could only be ameliorated. Implicating parenting style in the etiology of his syndrome, on the other hand, would place child psychiatrists firmly at the centre of family life, giving them a role arguably more powerful than that of parents themselves: the ability to intervene therapeutically for the sake of the child.”
And way back in 2012, he was criticizing how dollars were allocated in autism research to the hunt for a genetic or environmental cause and cure, rather than to improving the lives of people living with autism.
On his blog he wrote: “When kids on the spectrum graduate from high school, they and their families are often cut adrift—left to fend for themselves in the face of dwindling social services and even less than the meager level of accommodations available to those with other disabilities.
…What could be done to make the world a more comfortable, respectful, and nurturing place for millions of autistic kids and adults—now, starting today?”
Steve was a one-of-a-kind science writer and human being who immersed himself in the autistic community to build understanding and acceptance. He was working on his next book, The Taste of Salt, which “tells the human stories behind one of the most impressive, but little-known, medical successes of our time: the transformation of cystic fibrosis from an inevitably fatal childhood disease to a chronic and manageable condition of adulthood.”
