Steve Silberman ASAN Ally of the Year talks about the making of Neurotribes, now out in paperback, and the future of the autism community.
By Debra Muzikar
- What was your impetus for writing NeuroTribes?
Since I answer that question at great length in the introduction, I’ll keep it simple here. The original seed of the book was an article I wrote for Wired magazine in 2001 called “The Geek Syndrome.” It was one of the first articles in the mainstream press to talk about autism in high-tech communities like Silicon Valley. I stayed in touch with the families I wrote about and also got email about that article nearly every week for ten years, which is very, very unusual for a magazine article. These emails were heart-wrenching, describing the challenges that autistic people and their families face daily in finding employment, housing options, health care, classroom placements, and so on. Meanwhile, as the years went by, the whole world was becoming obsessed with autism. But it was having an entirely different conversation, focused on one issue only: Do vaccines cause autism? This question entirely dominated the social discourse on autism, wiping virtually every other issue off the table, particularly in online comments sections. I started to wonder when the needs and concerns of autistic people and their loved ones diverged so radically from that of the media, which was perseverating on vaccines. That led me to research autism history in depth to write NeuroTribes, and much of what I discovered surprised me.
- How long did it take for you to write the book?
I was accumulating data and news stories for about nine years after writing “The Geek Syndrome.” Then the book proposal (which was ridiculously long in retrospect, 108 pages!) took six months to write. Then the book itself took five years of writing full-time, 80 hours a week, from before dawn till late at night, with only a few scattered days off — never two in a row — all that time. It was the hardest thing I’ve ever done, and had a significant impact on my health, because I was so sedentary and prone to panic attacks because I had to keep asking my editor for extensions, and I was a journalist who took pride in meeting deadlines. My husband and friends eventually got pretty concerned for me. They were right to be concerned.
- How do you write? Is there a specific place you write, time of day? etc?
I broke all my own rules to write NeuroTribes. I was writing all the time, when I wasn’t reading for research purposes. My house turned into a library of autism history. I was obsessed. I hardly saw anyone outside of my husband all that time. I lost touch with dear friends. To maintain some sense that I still existed in the social world, I tweeted a lot. So much that people asked me if my tweets were automatic and pre-scheduled! But that was me, looking up through my little Twitter periscope at the human world from many fathoms deep every few minutes. At some point, my watch kept stopping. I tried unsuccessfully to buy a new battery for it, until an honest salesman finally told me, “I can’t sell you a battery because that’s a solar watch! You’re not getting enough sunlight.” So I started putting the watch on the windowsill and kept writing.
- Do you ever have writer’s block and if so how do you get through that?
I couldn’t afford to wait for the Muse to arrive; I didn’t have enough time. I would just start writing every morning, and if it turned out to be crap, I’d throw it away or radically revise it. Thinking in terms like “writer’s block” or “inspiration” were luxuries I didn’t have. The hardest thing was coming up with a tone that would hopefully appeal to three communities that I hoped would be interested in my book: autistic people, their families, and professionals, including educators and researchers. That was very, very, very hard to do. That’s another reason I was having panic attacks. I also thought my publisher would think I had gone too far down the rabbit hole, with everything from Nazis, to Henry Cavendish gauging the mass of the Earth in his backyard, to the roots of science-fiction fandom, to the dawn of the modern neurodiversity movement. At some point, I knew that NeuroTribes was not like any other autism book that had ever been written — but I wasn’t at all sure that was a good thing until the book was so well received by so many different kinds of people.
- What is the most important one item you want people who read Neurotribes to understand?
There are many points I hope to get across, but I suppose the main one is that autistic people are people: they’re not puzzle pieces or baffling enigmas or medical mysteries to be solved or “normal” people “trapped” in the bodies of autistics or any of that crap that infects so many portrayals of autistic people in both the clinical literature and the popular media. At the same time, I think it’s equally important to celebrate the differences between autistic people and typical people, and to recognize the need for accommodating autism as a significant disability in the same way that society has learned to accommodate people in wheelchairs, prompted by the brave leaders of the disability-rights movement.
- Because the history of autism is so dense many people have suggested a sequel to Neurotribes. Will that happen?
I don’t think so. I think autistic people should be leading the societal conversation on autism now. In a way, my whole book is the story of how we reached that point. I’ll continue to give talks and interviews for a while, in part because I make my living as a writer and I wrote a book that people are interested in, and in part so I can make that point in mainstream media, which autistic people often don’t have access to. That’s one reason I always tell reporters who call me for a quote to talk to autistic adults too — and then I provide them with contact information, because reporters are always working really hard, on tight deadlines. But, as I say in the new afterword for the paperback edition, one of the most promising developments since my book was published is the number of autistic people working in media, like Dylan Matthews, Emily Brooks, and Eric Michael Garcia. They all did really thoughtful pieces on my book, and I’m very thankful.
- What do you think are the main challenges in the autism community right now?
There are too many to mention, so I’ll just focus on one: the level of rancor and backstabbing in the entire autism community is emotionally devastating to everyone. It comes from all directions: from parents, from clinicians, and from people on the spectrum themselves. No one is spared. The toll this takes on the community as a whole is absolutely tragic. Many of the autistic bloggers who inspired me when I started writing NeuroTribes have “gone dark,” silenced because they couldn’t take the sheer level of personal attacks that were aimed at them daily.
A researcher has written blogs referring to “Silberman’s tribe of Nazi sympathizers” — can you imagine how it feels reading that, being a gay Jew and a son of Communists to boot? Hitler would have killed me three times over. It also ignores the fact that my book contains one of the most detailed and horrifying exposés of the Nazi holocaust against autistic people to date. Virtually everyone who comments on autism publicly in any way is dragged over the coals. One of the things that blows my mind is when anti-vaccine websites trash things like quiet rooms in schools and “autism-friendly” showings of movies, because they feel that these modest efforts to improve the lives of autistic people and their families “normalizes” autism and detracts from their dire message that autism is a modern epidemic, which it isn’t. Really? You’re going to argue that autistic people and their families should suffer more so you can keep defending Andrew Wakefield’s bogus, multiply debunked, and retracted paper? It seems like there should be some common ground, even between two extremes: autistic self-advocates and parents who claim to love their “vaccine-injured” children. But there isn’t. Don’t we all want happier, healthier, safer lives — with better options for housing and employment — for autistic people and their loved ones? But somehow that common goal gets lost in all the smoke and fury.
- People describe the neurodiversity movement as a civil rights movement. Can you discuss what this means?
Again, this is one of the primary subjects of my book, so I’ll keep it brief here. A graduate student in Australia named Judy Singer coined the word “neurodiversity” in the late ’90s in part because she had a mentor who had survived polio, and educated her on what’s called the social model of disability, which says basically that a condition is only as disabling as society fails to meet your needs. In other words, if you live in a town with no wheelchair ramps, accessible bathrooms and classrooms, and curb cuts, being in a wheelchair is extremely disabling. But if — because of the hard-won victories of previous generations of disabled activists! — you live in a community that offers these accommodations, you can rock that wheelchair. You can go to school and to work, you can shop and vote, and you can go to concerts in accessible venues. The neurodiversity movement is the logical extension of the disability-rights movement and the civil-rights movement, which was about taking pride in who you are and fighting like hell for what you deserve.
- Some Autistic people have been critical about a person not being autistic writing a book about autism. Can you comment on that?
Sure. I get it. As a gay man, I would initially be skeptical about a book about the history of homosexuality written by a straight man. But the proof would be in the pudding: Did the book contribute to the bigotry and prejudice against LGBT people, or was it a sustained, well-constructed, and thoroughly documented attack on bigotry and prejudice that helped move the world a millionth of an inch toward compassion and equality? I’ve had so many autistic people tell me they felt more pride in themselves, and more righteous rage against the systemic oppression of people on the spectrum, after learning the details of the history that I reveal in my book. I’ve had an equal number of parents tell me they now understand the importance of believing in their children’s potential, and in the importance of helping their children find mentors in the autistic community. I’ve also had clinicians tell me they had life-changing insights into the humanity of their “research subjects” by reading NeuroTribes.
I never claim to be “speaking for” autistic people, and I fight very hard against media framing that attempts to put me in that pigeonhole. The BBC recently interviewed me and described me on their website as a “spokesman” for autistic people. I immediately called them up and demanded that they change the description to “ally.” In fact, what I said was this: “Can you imagine calling a white man a ‘spokesman’ for black women? Would you ever do that?” They got it and changed it immediately. The Autistic Self-Advocacy Network, which is one of the most radical and effective autistic-run organizations, gave me an “Ally of the Year” award last year, and I strive daily to be worthy of that word by using my visibility to redirect the spotlight onto autistic people themselves.
My book was very deeply informed by interviewing and quoting dozens of autistic adults, by reading autistic books and blogs, and by simply hanging out with autistic people and making autistic friends. I tweet links to autistic writers many, many times a day, as I have since long before the book came out. When the Autism Society of America asked me to do the closing keynote at their national convention this year, I specifically requested that instead, I host a diverse panel of autistic self-advocates talking about whatever they felt was important. It was fabulous, and really important for all the parents and clinicians there to see, as well as for autistic people in the audience to see. And at the recent #AllinVAC conference in Australia, when I was asked to moderate a panel of self-advocates, I felt strongly that they didn’t need me there, so after making apologies beforehand, I simply didn’t show up, so they could just talk and control the entire agenda of the session. Through ASAN, I’ve funded a prize for young autistic writers that will be awarded at the group’s annual gala this year for the first time. I do everything I can to “stay in my lane” as an ally, as they say — in part because I know how crucial allies were to the advancement of the gay rights movement, thinking of groups like PFLAG, the Parents and Friends of Lesbians and Gays. The first time I saw PFLAG marching at a gay pride march in New York City, I wept for joy. My parents — who had responded to my coming out in high school by sending me to a therapist for a cure! — marched with PFLAG one year, which made me incredibly happy. It wouldn’t have occurred to me to walk up to them and say, “You folks aren’t gay! Get out of here!” Every civil-rights movement, to be effective, needs allies, though there are also places were allies shouldn’t go and where the community can just enjoy being with itself.
That all said, there are some things I can’t do: I can’t not be neurotypical. I was born this way. So I try really hard to listen to autistic people. And I can’t unwrite my book. I was a science writer with a long track record before I wrote NeuroTribes, and I tried to use my privilege in a way that would give autistic people and those who love them useful information for the struggle ahead. I’ve heard recently that a wonderful autistic friend of mine named Leo Cappella may be writing a history of the autism rights movement from an autistic perspective. That’s crucial, and I wish him the greatest success. That’s what I would suggest: If you think NeuroTribes isn’t good enough, write a better book, or build something that makes the lives of autistic people better. The world desperately needs your work.
- Neurotribes has received critical acclaim. Can you tell me what awards have been most meaningful to you and why?
The “Ally of the Year” award from ASAN that I mentioned earlier meant a lot to me. And I was honored to be the first science writer in history to win the Samuel Johnson prize for non-fiction in England, because that opened the door for science writing to be on a level playing field with other serious forms of literature. That prize also allowed me to focus the attention of the British media on all the issues of inequality, bullying, misdirected research focusing primarily on autism causation, and failures of service provision that I address in my talks.
- How did the late Oliver Sacks influence you?
Oliver saw his patients as human beings first, rather than as labels or research subjects. In An Anthropologist on Mars, he profiled Temple Grandin in the full breadth of her humanity — her humor and subversive wit, her passion for her work, her hopes, her self-reflections — which was utterly revolutionary at a time when autistic people were invariably written about by Oliver’s peers as mere checklists of deficits and impairments. His portrayals of his patients as people struggling to creatively express themselves in the face of various forms of disability set a high bar for writers in any field, not just medical writers. He was also a lovely, profoundly learned, and very complicated man. I miss him as a friend as well as a mentor in writing.
- What will you be speaking about at the 2016 Love and Autism Conference in San Diego?
I’ll be talking about some of the lessons that I learned from autistic self-advocates while writing NeuroTribes, as well as the basic history that I uncovered for people who haven’t read the book yet. I’m also looking forward to a conversation with self-advocate Alex Plank, whose work I’ve been following since he launched wrongplanet.net with Dan Grover when they were both teenagers. I’m also excited to be on the same bill as Barry Prizant, whose wonderful book Uniquely Human: A Different Way of Seeing Autism is one of the first books that I recommend to the parents of newly-diagnosed children, when they’re being bombarded with so many negative messages and stigmatizing judgments from professionals. It’s a very hopeful, encouraging book from a guy who has been in the field for a very long time. And I look forward to seeing autistic pals like David Finch, who is the author of a hilarious and wise book called The Journal of Best Practices, and one of the coolest people I know. I’m grateful to Jenny Palmiotto for putting so much work ito making this a great conference with prominent autistic representation. I’m looking forward to it.