Interview: Steve Silberman

A man in a suit smiling. Photo from Steve Silberman

Today, Neurodiversity News has had the honor to speak with Steve Silberman, who is the author of NeuroTribes, and is one of the Neurodiversity Movement’s greatest allies.


Neurodiversity News: Tell me about yourself and what you do.

Steve Silberman: I am a writer. I wrote for Wired Magazine for a very long time as a science reporter. About five years ago, I published a very in-depth history of autism and neurodiversity called NeuroTribes. Unexpectedly, it became a bestseller and is now out in 20 different languages.

NN: What impact do you think the book had on the autistic community as a whole?

SS: Well, when I was writing the book, I realized that I was not writing a science book about autism or certainly not a medical book, but that it was the history of a tribe of people. A “NeuroTribe,” if you will, coming into awareness of themselves, coming into awareness of how many autistic people are out there. They’re taking steps to ensure their civil liberties, their right to self-determination, respect, and self-expression. I’m very grateful that a large part of the autistic community has really celebrated the book and really helped spread the word about it. I’m incredibly thankful about that.

When I was writing the book, I did not have the confidence that anyone would like it. In fact, I thought clinicians wouldn’t like it, I thought parents wouldn’t like it, and I thought maybe there was a chance that autistic people wouldn’t like it. There’s also the complex question that I’m not autistic myself, so what gave me the right to write this book? However, no one else had written anything like it, and I tried to do so much original research that it would be useful in making the argument that autistic people deserve respect.

Basically, what I did was frame the Autistic Rights Movement as an extension of the Disability Rights Movement, as the founders of the Autistic Rights Movement were doing already. When I started writing the book, autism was still considered this weird diagnosis, where people were arguing that it was caused by vaccines, which it most certainly was not. I feel that the book came out at just the right time when the world was ready to accept the possibility that autistic rights are human rights and disability rights; that’s the direction that we should go in as a society, instead of pouring millions and millions of dollars a year into research on how to prevent autism in the future.

NN: I agree with that. On the flipside, do you know how the book has impacted the autism community? (martyr parents, anti-vaxxers, the ABA industry, etc.)

SS: A lot of parents, like those who run the Thinking Person’s Guide to Autism, are progressive parents who have already been through the anti-vaccine movement and recognized that instead of trying to cure their children and change them into people they’d never be, the way to ensure their happiness would be to give them all the support, communication technology and understanding that they needed in order to thrive exactly the way they are. So among parents like that, I’m very happy to say it had an extremely positive impact.

The anti-vaxx movement did not embrace my book. What I’m very happy to say is that a lot of parents who were on the fence about the anti-vaxx movement, because they did not know the true history of autism that I provided in NeuroTribes, were convinced by my book that the direction they needed to go in was to support neurodiversity, and to honor neurodiversity in their children. I think a lot of parents who were unsure of where to go finally had another direction to go in. The reason that the vaccine myth took off was because it explained something that had been previously unexplained. I do understand that, and I do understand that some parents who end up in that community have really good intentions. But now that I have done the research and many autistic people have done the research themselves, we know that there’s another direction to go in. You no longer have to fall back on that BS really.

As for clinicians, I would say they have mostly embraced my book, and I’m very happy about that. People like Judith Gould, Lorna Wing’s assistant, who invented the concept of the autism spectrum, liked it. People like that really embrace the book and reviewed it in scientific journals, so that was good. Obviously when it comes to autism, there will always be some people who are not happy. There’s a small group of anti-neurodiversity autistic people in Europe who don’t like the book. But enough people like the book that I got to feel like I pushed the world in a good direction at the right time. There will always be critics. But overall, I’m happy about the impact the book had.

NN: Is there anything you wish you explored further in the book?

SS: Believe it or not, the book was originally just supposed to be 250 pages. It was also supposed to take a year and a half to research and write. It took five years and I handed in an 800-page draft. My publisher said, “well, we can’t really publish an 800-page book because no one will read it, so you have to cut it by 350 pages.” What my publisher felt was that the most important research of the book was around the early history of autism with Leo Kanner, Hans Asperger, the history of the holocaust. But what that meant was that the research from the more contemporary era had to be cut.

One of the unfortunate things about that was that because people of color could not get an autism diagnosis for decades, they ended up being somewhat underrepresented in the final text of the book, so I do regret that. I do wish that more stories of women diagnosed as autistic, particularly as adults, had been available to me. I do look for them, but they were hard to find. I used the ones I could. Other than that, I feel like I covered enough.

NN: That’s good. I also loved how you closed the book with Mark Rimland. Have you heard from him?

Steve Silberman, who is wearing a blue shirt with suspenders, sitting next to Mark Rimland, who is wearing an orange shirt

SS: I have not. When I was writing about Mark, I was fairly certain that his dad’s former colleague, Stephen Edelson, would not like some of the things I was saying about [Bernard] Rimland. Bernard was, in his own way, one of the founders of the cure autism, anti-vaccine movement. Mark was certainly not involved in that, and the point I was trying to make in NeuroTribes was that Mark’s life proved that what autistic people really need is acceptance and creative outlets. His mother, Gloria, discovered that he was an artist and encouraged him to draw.

When I met Mark, we went to a gallery opening of his work, and he was one of the happiest guys I ever met. When he was a kid, his father predicted a very bleak future for him. However, his mother and father also did give him the support that he needed to thrive as Mark Rimland. I started to feel like Mark’s life proved the thesis of the book, even if his father, Bernard, died wishing that Mark was not autistic. It was an interesting paradox, and as a writer, I do love paradoxes and exploring them. I don’t like simple answers. I enjoy complexity. So that’s what I did with Mark Rimland’s story: I embraced its complexity.

Everybody in town also knew him. He could walk into a local restaurant and the waitress would get his iced tea going without him even ordering it. Mark’s life is like a microcosm of a neurodiversity utopia, even though his father was one of the people who launched the movement to cure autism.

One of the best things to come out of the reception of the book was me making a lot of autistic friends. A lot of my friends are autistic, and I love them. Of course, they’re all different from each other, but they’ve been a very nice addition to my life.

NN: Yeah, and your time at Autreat really opened your eyes, from what I saw in the book.

SS: I was actually urged to go to Autreat by Ari Ne’eman.  Ari is one of the main people who I’m so happy about meeting in the course of NeuroTribes, and he insisted that I go to Autreat. It was like a mental shower that washed away a lot of the myths I had about autistic people. I literally remember coming back from Autreat after about a week, sitting on my desk and writing the book, and I’m typing this clinical description of autism, and I had to stop myself. I said to myself, “stop, Steve. You were just with these people and they are not like that.”

Autreat is probably one of the most important early experiences that I had during the research of NeuroTribes because it shaped everything that followed.

NN: Who are your greatest inspirations?

SS: Oliver Sacks, the neurologist and author who wrote Anthropologist on Mars, as well as a profile of Temple Grandin when she was the first autistic adult to “come out” in public. Allen Ginsberg is another one, who was a poet in the 1950’s. His mother was schizophrenic and died in an institution after a botched lobotomy, which inspired Allen to write his greatest poem, which is called “Kaddish,” meaning the Hebrew prayer of the dead. In the poem, he describes how brutal the conditions were for people living in institutions. Even though autism in adulthood was not part of Allen’s worldview due to the time that he lived in, his compassion, energy, and identification with people who were normally cast out of society really helped me. I was Allen’s teaching assistant when I was in my early 20’s.

Other influences were the Mad Pride Movement, as well as the Gay Liberation Movement and Civil Rights Movement. My parents were radicalized by participating in civil rights marches in the early 1960’s. I still remember going on those marches when I was a child. All of those movements that affirmed every human life certainly influenced me.

NN: I know you got an upcoming book about a rare disease. Would you be able to tell me a little more about that?

SS: Sure. My next book is about the history of cystic fibrosis. Cystic fibrosis is one of the most exciting medical stories of the 20th and 21st centuries. 40 or 50 years ago, if you were born with cystic fibrosis, you would’ve died before you were even old enough to go to school. It was an inevitably fatal childhood condition. But over time, researchers found ways of keeping those with cystic fibrosis alive into their teens, 20’s and 30’s. One of my best friends, who’s in his 30’s, has cystic fibrosis and is doing quite well, which would’ve been unimaginable 50 years ago. The reason why most people don’t know that story is because cystic fibrosis is kind of gross. It’s a disease involving mucus and the lungs, so there’s a lot of stigma attached to many of the symptoms of cystic fibrosis, and many people don’t like to talk about it.

As with autism, I’m kind of fascinated by issues of how societal stigma affects the way that a certain condition is talked about. What’s happened in the last couple of years, which is tremendously exciting, is that a medication was developed for 90% of the people with cystic fibrosis. This medicine, which is called Trikafta, is incredibly promising for cystic fibrosis. It may succeed in changing cystic fibrosis from an inevitably fatal disease to a chronic but manageable condition similar to diabetes. So it’s no longer a death sentence and people with cystic fibrosis are having their own families. Since NeuroTribes, I wanted to cast light on a condition that simply doesn’t get enough attention.

The book will be called The Taste of Salt and should be out in maybe three years or so.

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