Steve Silberman is the author of NeuroTribes: The Legacy of Autism and the Future of Neurodiversity, which seeks to provide a cultural and historical context for understanding autism. A New York Times bestseller, NeuroTribes was awarded the 2015 Samuel Johnson Prize for Non-Fiction and has also been shortlisted for the 2016 Wellcome Book Prize. Reading NeuroTribes was an intense experience for me—not just because the book digs deep into mistreatment and injustice, but also because of my personal connections to the autism world. NeuroTribes reawakened my sense of commitment and my determination to take action against ableism. In our conversation for The Toast, Steve Silberman and I discussed the shifting conceptions of autism; the intersectionality of race, gender identity, sexuality, and autism; the violence perpetuated against autistic people; and many other issues that he explores in greater detail in his book.

Emily Brooks: From when you first wrote “The Geek Syndrome” in 2001 to when you finished NeuroTribes, you’ve immersed yourself in the autism community and autistic culture, forged personal relationships, and created a masterful work that has made an indelible mark on our present knowledge of autism. How has your personal understanding of autism evolved?

Back in 2001, like most people — including clinicians — I believed that autism was a rare condition. I thought that the chances of ever interacting with an autistic person in real life were slim. As I explain in the introduction to NeuroTribes, the seed of “The Geek Syndrome” was planted by a woman telling me in a neighborhood café that she believed an “autism epidemic” was underway in Silicon Valley. As a science writer, I wanted to find out if this was true. So my initial exposure to the subject was within what neurodiversity activists now call the pathology paradigm — viewing autism as a disorder, wondering if it was becoming an “epidemic,” and so on. That was definitely the mainstream view in that era, when the panic about vaccines was rising to a peak.

Jumping ahead ten years, one of the crucial things that changed my way of thinking was spending several days at a conference called Autreat, a retreat organized by autistic people for autistic people. There were about 70 folks there of all ages and levels of support needs — from people who didn’t speak at all, to those who use keyboards to communicate, to very chatty folks. The whole environment was set up to suit the social and sensory needs and preferences of people on the spectrum, and the schedule was designed around the principle of “opportunity, not pressure.” Instead of loud bursts of applause after each presentation, people flapped their hands in the air (“flappause”), which transformed a heavily stigmatized behavior — autistic kids used to be literally tortured with electric shocks to eliminate it — into a sign of celebration. It was one of the most relaxed and non-judgmental environments I’ve ever been in.

The most important question is not “What causes autism?” The most important question is, “When are we going to start giving autistic people and their families the kinds of support and services they need?”

My stereotypes of autistic people and autistic behavior were quickly worn down by the complex, nuanced reality of actual autistic lives. I discovered that widely held ideas — like that autistic people don’t “get” humor, or care about making friends — were wrong; in fact, people on the spectrum could be hilarious and social in their own ways. When I first got to Autreat, I saw people rocking, fidgeting, and stimming, which I expected; what I didn’t expect was how soon I would get used to it in an environment that didn’t insist on framing those behaviors as manifestations of pathology. One day I saw a teenage boy who seemed to be having a classic meltdown, wailing and flapping his hands while running down a hallway. Later on, his mother told me that in fact he was doing that because he was so happy to be back with his pals at Autreat.

I found that I acculturated to the environment. Similarly, when I got back into the “real” (neurotypical) world, everyone seemed so loud, rude, and frantic to impress one another. When I returned to my desk in San Francisco to start writing NeuroTribes, I found that the usual ways of writing about autistics — as obsessive, humorless, gaze-avoidant, empathy-deficient people — rang completely hollow. That was the beginning of my trying to write about people on the spectrum in my book in a new way.

The history of autism is both violent and oppressive, so as an autistic person constantly immersed in disability politics, I found reading NeuroTribes extremely emotional. How intense was the research and writing process for you?

Some parts of the book — notably, the first part of the first chapter, about the 18th-century scientist Henry Cavendish — were really fun to research and write. But the third chapter, about Hans Asperger and his colleagues doing their work at the University of Vienna as the Nazis rose to power and began secretly exterminating disabled children, was traumatic for me. I’m a Jew, a gay man, and a son of Communist parents — Hitler and his minions would have killed me three times over. The research for that chapter was all-consuming. So little had been written about Asperger and his colleagues, despite the thousands of books written about Asperger syndrome, that I was in virtually uncharted territory. Crucially, I was able to uncover several papers written by his colleagues that had been totally forgotten, and a very detailed description of his clinic written before the war by a visiting American psychiatrist, that explored the practices of Asperger’s team in depth, and made clear what a progressive place it was before the Nazis took over in 1938. The modern “spectrum” model of autism was really invented there.

Writing about what the Nazis did to the children was so horrifying that I had to listen to music that somehow honored the memory of these lost lives. One of the pieces I turned to most was Steve Reich’s “The Daniel Variations,” written in memory of Daniel Pearl, the Wall Street Journal reporter who was beheaded on video after being forced to say, “My name is Daniel Pearl and I’m a Jewish-American from Encino, California.” Reich, who is one of my favorite contemporary composers, turned that horrible forced statement into an angelic chorus, transmuting the horror into an ecstatic affirmation of humanity. For months on end, I would write about this secret holocaust committed against autistic people while listening to “The Daniel Variations” and weeping. I was not surprised when readers started telling me they would cry when reading those passages.

You write a lot about unintended consequences for autistic people, families, and society –the consequences of Kanner exclusively promoting his restrictive version of autism, the consequences of medical professionals believing that toxic parenting causes autism, the consequences of Lorna Wing advocating for psychiatry to recognize autism as a spectrum again. Is there a lesson here for the current autism community?

Yes. The lesson is that the people we call “autistic” have been here for a long time, quietly making contributions to society when they were given the support and resources to do so, and rotting away in institutions when they weren’t. So much of the anger of the anti-vaccine movement is predicated on the notion that autism is a new thing under the sun, or that there’s been this huge mysterious rise in autism in recent years — whether caused by vaccines, industrial pollutants, or whatever. But John Langdon Down, one of the founders of British psychiatry, wrote beautiful, heartbreakingly precise descriptions of what anti-vaccine parents call “regressive autism” in the mid-19th century, a hundred years before the MMR vaccine was introduced. Similarly, a psychologist in Moscow named Grunia Sukhareva wrote a sharply observed case series of a group of teenagers who clearly had Asperger syndrome in the 1920s.

The most important question facing society is not, “What causes autism?” That’s the question that’s consumed hundreds of millions of dollars in scarce research funding in the past decade. The most important question is, “When are we going to start giving autistic people and their families the kinds of support and services they need?”

What if Hans Asperger’s conception of autism — a spectrum comprised of people of all ages, a source of intelligence and creativity as well as impairment — had dominated the 20th century instead of becoming barely a footnote? How do you think society would be different right now?

In addition to anticipating the spectrum, Asperger believed that autistic traits are common, and that once you learned to recognize them, you saw them everywhere. Imagine if that broad and inclusive framing had prevailed, instead of Leo Kanner’s early view that autism was both monolithic and rare. Eventually, even Kanner would admit that autism could present in a diverse range of forms, but he didn’t do that until 1971, when the clinical conception of what nearly everyone called Kanner’s syndrome was already well established. It was considered strictly a childhood disorder — possibly the prodromal phase of adult schizophrenia — triggered by cold and unloving parents, and was so narrowly defined that very few people who would get a diagnosis of “Autism Spectrum Disorder” now would have qualified.

That’s the big lie behind those hockey-stick graphs spread all over the Internet by fundraising organizations and anti-vaccine groups to terrify parents: the notion that this once “rare” condition has suddenly exploded. And crucially, it’s not just that allegedly high-functioning individuals have been added to the diagnosed population. A study in Utah found that the revised DSM criteria were also better at picking up folks with profound intellectual disabilities who would have slipped through the net before.

Imagine if autism had been recognized as a lifelong condition that encompassed a broad, inclusive spectrum from the 1940s onwards. Imagine if all those years had been spent figuring out ways to help autistic children learn — which was what Asperger and his colleagues were working on before the war — instead of hiding them in brutal institutions and theorizing that they’re incapable of learning. Imagine if decades had been spent building support systems for autistic people and their families, instead of blaming parents for causing their children’s autism. The whole thing is a tragedy of epic dimensions.

Fighting against the monolithic ideal of autism is not just about the spectrum and age, but also about race, class, gender, and sexuality. How different are autism stories at the intersections of other marginalized identities?

That’s a very good question, but as a white, neurotypical, cisgender male, I’m not the best person to answer it. I’d like to refer your readers to a superb anthology coming out in April called All the Weight of Our Dreams (through the combined efforts of Lydia X.Z. Brown, Senior Editor; E. Ashkenazy, Project Manager and Editor; and Morénike Giwa Onaiwu, Assistant Project Manager and Editor), about the intersections between autism and race. The authors talk about the complex pain of feeling excluded for being autistic from the same communities where they find support for being people of color. I hope this book finds a wide audience.

Recently, I was on a plane talking to a young black woman who worked in D.C. When I told her that I’d written a book about autism, she said, “Autism is a white-people thing, isn’t it?” I told her that there was a long history of minority communities not having access to the kinds of services that provide a diagnosis. I’ve heard those kinds of statements before. In a way, they’re an echo of the time when Kanner considered autism a psychological issue that disproportionately affected upper-middle-class families, rather than a developmental disability.

In All the Weight of Our Dreams, E. Ashkenazy writes, “Let’s say that an autistic person of color is being raised in a community and culture that generally tends to view disability as a weakness and embarrassment. This situation is very different from that of an autistic person growing up in a community where seeking a diagnosis and related services are viewed as necessary and proactive. Let’s say than another autistic person of color is a part of a culture that upholds strict expectations of how community members should behave both at home and in the community. This person will likely face more than just autism-related challenges. They might be expected to interpret, understand, and adhere to community roles and expectations that are usually subliminally picked up on in infancy and childhood. This situation can prove difficult for a number of autistic persons regardless of race or ethnicity.”

I loved your detailed portraits of autistic people, and would have appreciated more in-depth stories of autistic women. In your research, did you run across accounts of undiagnosed autistic women from the 18th century, the fandom era, or other time periods that you can share?

I would have appreciated more in-depth stories of female historical figures, too, but I faced an interesting problem. I’ve been criticized in a couple of Amazon reviews for speculating about the autism of people from the periods you mention — like Henry Cavendish, Paul Dirac, and Hugo Gernsback.

But one of the rules that I set for myself at the beginning was that I wouldn’t go throwing around amateur diagnoses, though it’s popular to do so these days with geeky celebrities like Mark Zuckerberg and Marissa Mayer. I’m not qualified to diagnose anyone, including figures from history. So all of the people that I wrote about had been diagnosed by higher authorities, as it were. Neurologist/author Oliver Sacks retro-diagnosed Cavendish in an article in the journal Neurology, and autism pioneer Uta Frith and Cavendish’s biographer Russell McCormmach concurred. Dirac was judged to have been autistic by his biographer, Graham Farmelo, author of The Strangest Man, after a lengthy process of interviewing his friends and family members. And Gernsback’s biographer, a scholar of the golden age of science fiction named Gary Westfahl — who is autistic himself — made that call. In each of these cases, I did a tremendous amount of background research to support the diagnoses. So I was actually quite conservative about that.

But that created a new issue: I was unable to find any women from before the 20th century who had been retro-diagnosed with any level of credibility. People talk about Emily Dickinson and Jane Austen — or, later, the great British chemist Rosalind Franklin, who helped discover the structure of DNA — but in each case, the evidence base for these speculations was thin. So what I tried to do as a kind of corrective measure was to focus on the women in case series like Kanner’s, exploring the characters and fates of Kanner’s female patients much more than the men.

People forget how hard it was for a woman to get a diagnosis well into the 1990s. I write about that in the book. And in the later chapters, which cover modern times, I write about Temple Grandin (one of the first autistic adults to “come out”), quote from female autistic writers, and profile Carol Greenburg, an autistic mother of an autistic son. In the future, I hope to write a bit more about a woman who Kanner retro-diagnosed later in his career from old files and followed into adulthood. She didn’t do well, because autism was considered a childhood disorder, so there was no context to understand what she was going through, and no support systems available. She ended up being institutionalized as psychotic.

In NeuroTribes, there’s a lot going on about gender, from blaming educated mothers for autism to Lovaas’ leadership in the Feminine Boys Project. Could you speak to the gender politics surrounding autism?

That’s such a broad question that I’ll just focus on this: people ask me all the time if I think autism is being overdiagnosed — if I think it’s become this trendy label that’s just slapped on nerdy, socially awkward kids. What I generally say is that I think autism is still terribly underdiagnosed among women and also people of color.

This is partly because of history. In his original paper, Asperger said he had never seen a “fully fledged” case of autism in girls, though he described autistic traits in the mother of one of his male patients, and presciently suggested that mother and son were capable of understanding each other because of their shared traits. Kanner did write insightfully about female patients, but for decades, autism was diagnosed at a much higher rate in boys — typically at least four to one. This has led some geneticists to start looking for what they call a “female protective factor.” But I think it’s more important to launch a whole new wave of research into what autism looks like in girls, because I think most clinicians barely understand that yet.

It’s important to note that many of the most powerful autistic writers have been women: people like Julia Bascom, author of a classic essay about experiencing behavioral therapy called “Quiet Hands“; Lynne Soraya, author of Living Independently on the Autism Spectrum; Sarah Hendrickx, who was diagnosed in mid-life, after she had already written several books on the subject; and of course Temple Grandin — the list goes on and on. Many of the leaders of the neurodiversity movement are women.

Another thing worth noting is that one of the founders of that movement, Jim Sinclair, author of the seminal anti-cure essay “Don’t Mourn for Us,” has identified as “neuter,” as xe puts it. In my book, Jim credits xyr autism for immunizing xem against gender socialization. I think the connections between autism and non-traditional gender and sexual identities — gay, bisexual, asexual, trans, non-binary, and so on — are a huge uncharted frontier for autism research and a promising avenue of autism advocacy.

Words themselves play a large role in autism’s history, whether through communicating constantly changing disability terminology, rebranding harsh aversives, or connecting communities. How does the language we use around autism influence how society treats autistic people?

As long as autism is framed as an “epidemic,” autistic people will be seen as diseased, damaged, and lesser-than. You can see the insidious effects of this on anti-vaccine websites, where autistic children and adults are routinely described in demeaning and degrading terms by the same people claiming to be fighting a war against Big Pharma for their sake.

As long as autistic people are defined only in terms of their deficits and impairments, and not in terms of their potential, society will be missing out on the contributions that only they can make and squandering precious human lives.

Throughout history, autistic people have been framed as automatons and robots, lacking the qualities that make people human — qualities like empathy, the ability to feel emotions like love and caring, and the desire to form meaningful attachments with others. Granted, many autistic people struggle to engage in reciprocal interactions. But that doesn’t mean they lack the desire to have friends, find romantic partners, act creatively, promote justice, and make positive contributions to their communities. Often, they’re denied the resources and kinds of support they need to do these things. As long as autistic people are defined only in terms of their deficits and impairments, and not in terms of their potential, society will be missing out on the contributions that only they can make, and squandering precious human lives.

Hopefully your description of the terrifying, torturous roots of applied behavioral analysis disturbs and shocks readers. Through the lens of autism history, what is the price of making non-autistic behavior a therapeutic goal?

I love the perspective that Barry Prizant and Tom Fields-Meyer take in their superb new book, Uniquely Human: A Different Way of Seeing Autism, which is to advise against thinking in terms of “autistic behavior.” It’s just human behavior — attempts to adapt to the environment. If an autistic person is injuring themselves, they may be responding to a stressor in the environment that you can’t pick up on, like a buzzing fluorescent light, a scratchy collar, or digestive upset. It’s not very helpful to simply characterize the behavior as a “symptom” of autism that needs to be eliminated with more behavioral therapy. It’s better to ameliorate the distress by going to the source of the stress, if you can.

For decades, autistic kids were punished brutally — using methods that really were akin to torture, such as pouring hot sauce on their tongues or zapping them with electric cattle prods — for doing things like rocking and spinning in place. The now-debunked theory behind that was that autistic people couldn’t learn if they were behaving that way; there was also concern that a child acting in eccentric ways would cause other people to judge the whole family.

Now we understand that people on the spectrum regulate their energy levels and soothe their anxiety by “stimming,” and that it’s more important to eliminate stigmatization and bullying from society at large than it is to prevent a little girl from flapping her hands. But that also requires society to be aware of what autism looks like, and to have compassion and appreciation for autistic people.

In NeuroTribes, you tell the story of parents who stood up against professionals who were blaming them for their children’s disabilities and advocated for changing society instead of their children — great allies. Yet today, there’s an enormous gulf between some parents of autistic children and some autistic adults. How could we move beyond pitting parents and autistic people against each other?

I wish I could say, “It’s so simple. Autistic self-advocates and their families want the same things: happier, healthier, more secure and productive lives for people on the spectrum. Can’t we unite behind that common goal and do whatever it takes to get there?” But it’s not that simple. Some parents of kids with high support needs understandably feel confused or hostile when they hear self-advocates angrily rejecting the idea of a “cure”; likewise, some self-advocates understandably hear echoes of Nazi eugenics when they hear organizations like Autism Speaks tout investing millions of dollars into research into the causes of autism — why would they research the causes of something if they don’t intend to eliminate it? It’s easy for people on both sides of these arguments to miss the common ground, which is the shared interest in improving autistic people’s lives. In that regard, the notion that autism is a historical aberration — the unique disorder of our uniquely disordered time — is very destructive, because it renders previous generations of autistic people invisible.

One of the big things I learned in my research for NeuroTribes was that the parents’ movement — as it was originally conceived by people like Lorna Wing and Ruth Christ Sullivan in the 1960s — was all about fighting to create a better world for their children: changing laws so that all kids have a right to an education, preparing for their transition to adulthood, and thinking about building communities where the kids would live when they were no longer kids (like Somerset House in England). But then Andrew Wakefield popularized the notion that autism had become a worldwide epidemic caused by vaccines, and the public face of the parents’ movement became “warrior mother” Jenny McCarthy, who wasn’t battling discrimination against disabled people; instead, she was fighting to make her own son “normal” using special diets and other biomedical interventions. In other words, she was fighting autism itself.

The original autism parents’ movement was more akin to the broader disability rights movement that was unfolding in parallel than what the parents’ movement became once it got diverted into raging against the alleged vaccine/autism conspiracy. One important difference, obviously, was that the disability rights movement is predicated on people speaking for themselves and gaining their own voice in the formulation of public policy, while the original autism parents’ movement was predicated on parents speaking for their children, because many of their children couldn’t speak. That’s one reason that some parents and self-advocates are at odds; now people who communicate through keyboards and other forms of assistive technology are demanding the right to speak for themselves and to set their own priorities. The very name of a parent-run organization like Autism Speaks implies erasure of their voices.

The legacy of how society has treated autistic people is very, very dark, and the only way we’ll be able to move past it is by having an honest accounting of what happened. A reckoning.

It’s not going to be easy to reduce the tensions between the parents’ movement and the self-advocate movement, and maybe some of those tensions are necessary and good. But the amount of infighting in the broader autism community is extraordinary and a tragedy. Not a day goes by when I don’t hear somebody tearing somebody else down or trashing an organization. I’ve known some very excellent bloggers, particularly autistic bloggers, who simply had to go silent because they could no longer bear up under the constant attacks from virtually every side. It’s exhausting and destructive, and saps energy that could be devoted to fighting the real enemy, which is institutionalized ableism in every form.

The idea that NeuroTribes is a comprehensive history of autism seems to trip some readers up. My feeling from reading your book was not that it’s all there is to know about autism and autistic people; your intention was to provide a detailed and important background. If NeuroTribes is a starting point, what do you recommend readers explore next?

My book is not at all meant to be a comprehensive encyclopedia of autism, and it’s not presented that way. It’s not a good book for parents who are interested in researching treatments, and it’s not a substitute for reading about autistic experience written by the people who live it.

My hope for NeuroTribes is that it fills in huge gaps in historical information so that crucial aspects of the present situation are made comprehensible instead of opaque. To put it in very blunt language, one of my goals for the book was to answer the question, “How did things get so fucked up in autismland? Why is everyone so angry?” It turns out there are very good reasons for everyone to be angry. Parents were lied to for decades about their alleged role in causing their children’s autism, and two generations of autistic people lived and died in institutions that were worse than prisons, being subjected to “treatments” that would be considered war crimes if POWs were the victims. The legacy of how society has treated autistic people is very, very dark — and the only way we’ll be able to move past it as a society is by having an honest accounting of what happened. A reckoning. That’s what I intended NeuroTribes to be.

As far as what readers should read next, we’re in a golden age of writing about autism by autistic writers, as books like All the Weight of Our Dreams attest. There are also a number of books by parents now that no longer view autism as an enemy to be conquered with the latest diet, but as a lifelong disability that deserves support and accommodations. A book coming out in April by Susan Senator called Autism Adulthood — which is very frank about the struggles that Susan and her husband have been through to build a promising life for their son, Nat — is a good example of this.

As a society, it’s time we woke up from our collective illusion that autism is a puzzle that’s going to be solved by a medical breakthrough that’s perpetually just around the corner. Autistic people have been here for millennia, but it’s only in the last few years that we’ve been able to see them clearly. Now we have the opportunity to focus our resources on giving them what they need so that their families can finally attain some sense of peace and security about their future. I hope my book moves the world a millionth of an inch toward that goal.

---

This interview was generously sponsored by a reader. It has been minimally edited for length and clarity.