I interview Steve Silberman about his bestselling book, NeuroTribes
In this incredibly interesting and extremely lengthy interview, I speak with Steve Silberman, the author of NeuroTribes, a fascinating book about the history of autism. If you have any interest in autism, I urge you to buy his book and read the whole thing because it will not only change the way you think about autism but will change your views on society itself and the role society plays in defining disability. NeuroTribes also debunks many of the previously held beliefs about the history of autism, including who discovered the disorder. It also provides examples of how autistics have always existed in society and underlines the importance of neurodiversity. We also filmed an interview with Steve five years ago when he was just beginning the research for NeuroTribes.
Alex Plank: How’s it going?
Steve Silberman: Oh, it’s pretty good. People seem to be responding to the book as I kind of hoped in my wildest dreams, so that’s good. I’m getting so many emails and messages from autistic people , from parents, from clinicians, from people who don’t have any connection personally to autism. So thus far, it’s pretty good and there are the haters out there, but they’re going to hate but there’s not so much I can do about that.
Right now I’m actually thrilled because Dan Harmon asked me to be on his podcast, so I’m pretty psyched about that, actually.
SS: Harmontown, man.
AP: Did you see the film–the documentary about it?
SS: I haven’t seen that. Is it good?
AP: Yeah. I think he’s on the spectrum himself.
SS: Yeah, I know. That’s what’s exciting in a way.
I remember very clearly the moment that I met you actually. It turned out to have a big effect on the book, if you’d be interested in talking about that.
AP: Actually it’s funny that you say that because I was literally just about to bring up the fact that we first spoke in 2010. You granted me the first interview in public about your book 5 years ago.
SS: Yeah that’s true. And we were at Autreat, an autistic retreat organized by and for autistic people. Or we were at least out in front of Autreat. And Autreat was a really profound experience for me because it was the first time that I was able to be around autistic people who were simply enjoying themselves and having fun and it’s not about a kid getting evaluated at a clinic or something or even a kid with their parents. There were kind of no parents around in a way or only parents who had brought their autistic kids and who believed in autistic community.
AP: Also keep in mind that some parents are autistic themselves.
SS: Yes that’s true. I was very very glad that I attended Autreat early on in my research process because it ended up kind of relieving many illusions I had or sort of listing for my eyes these illusions that I had about how autistic people are that had been 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.
So it was such a relief to go to Autreat and simply be around autistic people who were enjoying themselves in an environment that was 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. It was actually one of the most completely liberating environments that I had ever been in and one of the interesting things about it–there were so many interesting things about it, I could talk forever– but for one thing, it was the first time I had ever been in the neurological minority and so that raised all kinds of issues for me.
I remember riding in the van from Buffalo surrounded by autistic people [who were] talking to each other and [I was] sitting there thinking “Well I’m neurotypical. . . When should I come out? Will it be bad if I come out? Will people not like me if I come out?” These were all questions that used to be bubbling in my brain when I was in high school and I was the only gay kid I knew. So it was funny. In a way it was like suddenly being in the minority in a different way. But this was kind of a cool way.
And I also remembered thinking that some of the staff at the college where Autreat was being held would talk to me in [a] kind of slow baby talk and I thought, “god, autistic people must get sick of this.” It was this kind but slightly condescending way of talking as if I couldn’t really catch what they were saying. So I was thinking “Jesus, do autistic adults have to deal with this all the time?” It was illuminating in so many different ways. When I think about the truly crude stereotypes of autistic people that I still had like “oh autistic people don’t get humor,” well, that was completely ridiculous.
Autreat was one of the funniest groups of people that I’ve ever been in.
SS: Yeah and there was a lot of dry wit being exchanged. I remember one hilarious moment was when Ari Ne’eman was just introduced and he had just been appointed by Obama to the NCD or had just been approved for it. And from the back of the room this young woman called out ” we love you Ari, if we were capable of feeling such an emotion.” So there was all this subversive humor going on.
And there were also very profound illuminating things happening like when I first got there I saw a kid who was sort of dragging his mother down the hall, and he was screaming and flapping his hands, and I had this kind of pity reaction from years of ableist programming and was sort of like “oh know, the kids having a meltdown. it’s a tragedy.” Then later on I figured out that the kid was incredibly happy because he was with his autistic buddies again at Autreat which was a thing that he loved. So he was actually in ecstasy. And because I didn’t know what autistic ecstasy looked like yet I confused it with autistic suffering. So that was really instructive.
AP: What were your first impressions of me and Jack Robison?
SS: Here’s the thing I’ll tell you. I’m going to be really honest here. I had been following both you and Jack in the press for years actually because I first wrote about autism in 2001 and then I wrote an article for Wired Magazine about how home chemistry was being criminalized by the federal government.
So I remember coming across a picture of Jack in court and reading about his case in the newspaper and thinking oh my god this kid is exactly the realization of the prophecy that I made in this article. He was like a chemical criminal or whatever.
And you I had also been following because you launched Wrong Planet with Dan Grover. Basically I though you guys were cool. But what happened when I met you at Autreat was that you guys were even cooler than I could have possibly expected. And what I thought–this is going to sound really crude–but, what I thought was “oh my god, these guys are the first autistic hipsters I’ve ever met.” It’s like you guys were so cool. You were exactly who I would have wanted to be hanging out with when I was younger, autism or not.
So we ended up having that interview and we ended up going out to dinner. It was a very easygoing conversation. What was great was that a lot of the people at Autreat were either older, closer to middle age (like my age), or they were younger like kids who had been brought there. So you guys were sort of in the middle and you seemed like a new free generation of autsitcs who had grown up in the age when a diagnosis was relatively easy to get, unlike people older than you when it was very difficult to get. [You guys] were informed by pop culture; and the same pop culture that informed your neurotypical peers in a sense, or a specialized geeky pop culture that particularly appealed to autistic minds, perhaps. And certainly Jack’s interest in chemistry informed what he talked about then. But anyway, I just had a really good time with you guys. You were sort of ambassadors from this generation of new free autistics and I really enjoyed meeting you.
And plus, you guys arrived in this really cool vehicle, I think a Range Rover. You just had it going on.
AP: Yes. A Range Rover Sport.
SS: Another thing that planted a seed of understanding in me, was there was a guy I met on the first day of Autreat who seemed cool. So the following day when I saw him in the cafeteria at breakfast I said, “Hey man, how did you sleep?” and he looked at me and said, “Why?” and it was actually a really good question because the only reason why I asked him how he had slept was because I’m neurotypical and I thought he was cool and I was just trying to make conversation; And it was completely ridiculous. Why am I asking how he slept?
But I realized that I did not have to invest so much energy in what neurotypicals do all the time, which is what I would call reputation management. You walk into a room, you figure out who the powerful, cute, or cool people are and then you try to impress them; and neurotypicals put a lot of energy into that, including me. I realized I didn’t have to impress anybody because nobody was trying to impress anybody. People were just being themselves. And it taught me a really profound lesson and that was something [which] really struck me about Autreat.
AP: I think part of the reason is we’re just so innately cool anyway; we don’t need to try. Coolness sort of just exudes from us.
SS: Another thing was that, as anyone who has seen pictures of me can attest, I’m fat. I walk through the neurotypical world and I’m constantly aware of how fat I am, in part because people say stuff (guys on the street will yell at me.) At Autreat no one cared. There were fat people [and] there were skinny people, but nobody was primping themselves up to impress everyone with how hot they were. You could get used to behavior that would be eccentric in a neurotypical context–like people flapping their hands. Anything was cool. And if someone just wanted to sit in the corner and rock, that was cool.
The other thing that really blew my mind at Autreat was that there was one young man, a teenager who did not say a word the first four days. I assumed he was nonverbal. At the very end of Autreat, he [stood] up and [said] “I just want to tell you all that this was one of the most beautiful weeks of my life” and then he sat down.
AP: It must have taken a lot of research [to write NeuroTribes.] I skimmed through the notes section, and you have quite a lot of notes and sources.
SS: Yeah, I basically lived in an autism library for five years. And many of the sources were not just lying around. I had to hire translators to translate documents from German. There were a lot of documents I had to get from remote libraries. So I had to write letters and send checks and do all of that archaic pre-Internet stuff to get these rare documents.
But it paid off because I ended up discovering something really profound and in fact, I ended up discovering things that rewrite autism history as we’ve understood it for decades. The traditional timeline of autism’s discovery, as it’s presented in dozens of textbooks and Wikipedia, is that autism was discovered in 1943 by this child psychiatrist at John’s Hopkins Hospital named Leo Kanner. And then this other guy named Hans Asperger, who was working in Vienna, published a paper a year later that is usually considered to be a footnote to Kanner’s discovery.
The two discoveries at virtually the same time are considered this miraculous coincidence of 20th century medicine. I discovered that’s all wrong. The true discoverer of autism was Hans Asperger in Vienna, who in the 1930s discovered what we now call the autism spectrum, a condition that [is] lifelong and includes a very wide variety of clinical presentations, from kids who can’t talk to chatty adults who become astronomy professors. So Asperger had an extremely prescient appreciation of autism that very much resembles the modern day view. Kanner did not; Kanner framed autism much more narrowly as this very very rare form of childhood psychosis. He would eventually say that it was caused by bad parenting–so-called “refrigerator mothers.”
But one of the biggest things I discovered from the autism history perspective is that the two discoveries in Baltimore and Vienna were not at all independent. What happened was, in 1938, George Frankel, Asperger’s chief diagnostician who was Jewish, had to flee Austria because the Nazis had marched in and taken over the country. He was helped to escape by an American clinician named Leo Kanner in Baltimore who brought him over to Johns Hopkins with the promise of a job.
And in fact, when Kanner’s first autistic patient, Donald Tripplet came to Johns Hopkins to be examined in 1938, Leo Kanner did not know what to make of his condition at first. He sent him to George Frankel to be assessed and evaluated and Frankel certainly knew what he was seeing because at that point he had seen dozens of autistic children and also young adults probably. So the two discoveries were not only not independent, they were both based on the expertise of Asperger and his team. But the problem was that Kanner framed autism much more narrowly than Asperger had done.
AP: That’s interesting because one thing that I thought was pretty cool was the way you did the chronology of the book and showed how Lorna Wing came in decades later and re-discovered Asperger’s paper and had it translated and eventually ended up getting the DSM to broaden the criteria and she even said it would cause a lot more diagnoses; it would make the number of diagnoses go up. And you show how all these people thought that [rise in diagnoses] was because of vaccines.
SS: The real failing, I thought, which is one of the reasons I wanted to write the book, was with science writers and science experts in part, in that no one had really explained to parents in a way that was comprehensible by lay-people, how the diagnosis had changed. What happened was you would get these dry experts saying “well we suspect that the rise in diagnoses may be caused by broadened diagnostic criteria and better case finding–” this dry jargon. Meanwhile, these parents are terrified that their little girl is not making eye contact or not talking or not hitting her milestones. So I think it’s very understandable why, for years, mainstream media played up the notion that mommy warriors like Jenny McCarthy were fighting for the safety of their children’s minds.
However, at some point, once it became clear that vaccines were not responsible because of studies and meta-analyses, the problem was that journalists still continuously referred to the mystery that it’s a puzzle why the numbers have been going up. Yes it could be that there is some tiny percentage of mystery in the rise in diagnoses but the fact is, if you talk to old-school autism experts, they understand that the scope of the diagnosis has completely changed in the last 30 years or so.
AP: That brings us to another point. I loved how you started the book with [the Perl Cruise].
SS: Well, I was aware that I had gotten interested in autism in a very unusual way because, think about it, almost every autism book is written either by a parent, a clinician, or an autistic person themselves, like John Elder Robison.
AP: Or Temple Grandin.
SS: Or Temple Grandin. And I knew that I was coming at autism from a completely different perspective. I’m a science writer; I’ve been writing about science for more than 20 years; and it’s not like I was glomming onto autism in some kind of opportunistic way.
I actually just became incredibly frustrated with the fact that all the public conversation about autism for like ten years in America basically devolved into argument in Internet comment sections between people who were against vaccines and the people they were calling “shills” for big pharma which included me. I’ve written articles that are very critical of big pharma. I wrote an article on the placebo effect that was very embarrassing to big pharma. I tweet exposes of big pharma all the time. Believe me, I don’t have any connection to big pharma. But big pharma is horrible. They’re completely capable of sinister conspiracies. But in this case, that’s not what’s happening.
AP: What’s interesting to me is the fact that a lot of Perl programmers were autistic themselves. In fact, the Perl conference has adopted Jim Sinclair’s badges–the red, green, and yellow that you use to say if you’re welcoming social approaches. It’s interesting because when I was younger and I was programming, Perl was my favorite programming language. In fact, I’m sitting in my childhood bedroom right now (because I’m visiting my parents) and there’s tons of books on Perl. Because there’re so many different ways of writing the code in Perl, it seems like it’s something that was written by someone who is open to the idea that there are different ways of getting to a solution, which is sort of the same notion of neurodiversity.
SS: I was just going to say, Perl has neurodiversity baked into it. The one thing I would be careful about though is I wouldn’t say “oh yeah all those programmers were autistic.”
AP: Well, not all of them.
SS: Right, what I did see is that many of programmers seemed to have autistic traits. But I only realized that in retrospect, in a sense. There were a lot of people told me they didn’t have much of a social life, that all weekend they would stay up all night coding, working on their own projects. They were very smart and in fact delightful to be around but I did feel like there was some kind of tribal identity that was manifesting itself in front of my eyes and it wasn’t until I discovered that, in high tech communities a lot of people have autistic kids, that I really made the connection.
AP: Well, yeah. That’s [The Geek Syndrome], your article in Wired Magazine, one of those magazine articles that stands out as being timeless. Usually I read an article and forget about it the next day. But this was an article that people still talk about today which is pretty impressive considering that was written in 2002.
SS: 2001 actually. In fact it came out two weeks after 9/11 so one historical irony is that it was supposed to be the cover, but then 9/11 happened and it got bumped to the back. But it still got tons and tons of email and six months later, Time magazine published a cover article with the headline “the geek syndrome” and they interviewed many of the same sources that I did.
AP: So they stole your article.
SS: Well . . . it’s the highest form of flattery. To me I flinch rereading certain things in that article now. I flinch a little bit because I engage in a little scare-mongering about the numbers myself. And that was partly why I felt like I needed to go back and get the story right, with NeuroTribes.
AP: How do you feel? Do you feel like a success? Do you feel like a failure? You’re number eight on the New York Times bestseller list.
SS: Well, I never thought that I would be on the bestseller list in my wildest dreams, particularly a week after coming out. So that’s good. I don’t know exactly what it means yet. It’s like people have all these fantasies about what writing a bestseller means. I don’t know if I’m going to be living in the Bahamas; I don’t think so. Plus, if it’s on the bestseller list for more than a week, I’ll be even more shocked.
I’ll tell you what makes me feel like the book was a success. Many of the reviews in the mainstream press and many of the emails that I’ve gotten have been making the point that I really wanted to make, which was that we should listen to autistic people when they’re talking about their lives, that they are in a sense the real experts on autism, or on navigating a neurotypical world with autism.
And also there’s a message in the book (I hope) about people having faith in their own potential in their own potential and in their kids’ potential (if they’re parents) because so many children, who were very difficult in the first years of their lives, like Temple Grandin and like Mark Rimland, turned out to be wonderful beautiful shining examples of humanity in middle age, and they’re still very autistic.
What I really tried to do was widen the sense of human beauty and excellence to include autistic people after decades of them being stigmatized and shamed and excluded and mocked and bullied. My book is not exactly a beach book. There’s stuff about the holocaust, there’s stuff about the brutal early days of Ivar Lovaas’ work at UCLA on behavior modification. I saw somebody applying trigger warnings.
AP: A “poet with a cattle prod” is how one journalist described Lovass.
SS: Yes, exactly. I can totally understand why some people on the spectrum would want heavy trigger warnings before reading the book. There are parts that not only make people cry while they’re reading; I was crying when I wrote them. Like the [sections] about the holocaust.
AP: I was as well. I was crying about it. Interestingly enough, I was actually at the beach when I read much of your book. I actually think it’s a good thing to read while you’re at the beach because you can concentrate more on something that’s very interesting. And yeah it’s sad, but at the end of the day I think that the message you give is pretty uplifting.
SS: Yeah, people seem to be taking it that way. One of the ways that I put it is that the cure for most disabling aspects of autism are supportive teachers, a community that appreciates and includes people with eccentricities and parents who believe in their children’s potential, and that’s what Mark Rimland ended up having, even though his father Bernard [Rimland] tried for decades to find a cure for autism and was unable to do so.
AP: You mention that Mark Rimland sometimes would say “Are you teasing me?” but I remember when I spent quite a bit of time with Mark Rimland, he would say that a lot.
SS: I think he probably learned that he was more earnest than the NTs [who] were constantly talking to him, so it’s like a defense mechanism. It’s to protect himself from being mocked.
AP: And he was certainly loved by the community. I remember going to the coffee shop that he would always go into and everyone there just loved him so much in Kennsington, San Diego.
SS: Yeah yeah, when we were walking down the street in Kennsington almost everybody who passed said hello to him by name or they said, “hey mayor” because people call him the mayor of Kennsington and some people don’t even know he’s autistic or know that his father helped to launch the autism parent community in the US or that he’s in fact an incredibly important person in history.
AP: One thing I found interesting about him is that he’s just such a nice guy.
SS: He’s sweet.
AP: And he’s fun to hang out with. He has Simpsons characters that he carries around and he can quote Simpsons episodes.
AP: And he’s very knowledgeable.
SS: Plus he seems very at ease with himself which is not a quality that most people associate with autism. It’s like autism is associated with chronic anxiety and depression and all these comorbidities. And those are all real things and real sources of suffering but Mark seems incredibly comfortable in his own skin which is a beautiful thing to be around.
AP: He can remember the day that he was in an elevator in Beverly Hills going to meet Dustin Hoffman. You wrote a lot about Rain Man. It was a very interesting history of Rain Man. I was surprised to see that much detail.
SS: One of the reasons why I did that is, I think for your generation of autistic people, they look back at Raymond Babbit and they say “oh he’s such a stereotype. He’s a savant and plus he lives in an institution.” What people don’t realize is that even within the autism community, parents and clinicians and autistic people, the idea of an autistic adult was still new when Rain Man came out because the diagnosis had only recently been made available to adults and Asperger’s Syndrome wasn’t even in the DSM yet. So when people say “oh he’s such an Asperger stereotype,” Um no.
AP: Well [it's not] Asperger’s. [It's] autism.
SS: Well he’s not Asperger’s for one, but I’ve read that a million times and people say that he’s a stereotype, but in a sense he sort of created the stereotype. No one knew what an autistic adult looked like, except for very few people who had autistic relatives and many of them had been in institutions. And one of the things that I uncovered for the book is that the character and behavior of Raymond Babbit was based on autistic people who did not live in institutions. So it was Mark Rimland And Peter Guthrie and both of them had been kept out of institutions by their parents and in fact were either living on their own or living with support on their own or had jobs and so, in fact, Raymond Babbit the character was more impaired in daily life than the real-life autistic models on which he was based.
AP: I think they took a lot of artistic liberty, not autistic liberty.
SS: Right; exactly. And I thought that was very, very interesting. But I really respect screenwriter Barry Morrow and Dustin Hoffman for bringing autism to the attention of the world because before Rain Man. I spoke to a lot of older parents like Ruth Christ Sullivan, mother of Joe Sullivan who was another of the real life models for Rain Man, and they all told me that before Rain Man, no one understood what was going on with their kids. They would always have to explain “no no no, not artistic, autistic” and almost immediately, within a week, people on the street instead of giving them sour looks when their kids were having a meltdown, would look empathetically because they’d seen Rain Man and they understood that their children were autistic.
And Ruth Christ Sullivan, who was the co-founder with Bernie Rimland of the parents movement in the United States told me that Rain Man had done more for autism than 25 years of their work. Yes, it’s one guy so it’s a very limited portrayal of what autism is, and not only that, it’s not informed by the extension of the spectrum that the existence of Asperger syndrome and PDD-NOS to the DSM produced. It’s kind of a Kanner syndrome stereotype of one guy. It was revolutionary for its time.
AP: The reason so many people were diagnosed [with PDD-NOS] was due to the fact that it didn’t have the word autism in it and it didn’t scare parents. So diagnosticians, clinicians–they preferred giving out this term that essentially meant autism. In fact it isn’t even used anymore because the only reason it was used was to take away the word autism so parents weren’t as afraid. Right?
SS: That’s true. And in the book I talk about Lorna Wing very much inventing the term Asperger syndrome as an autism diagnosis that did not contain the scary word autism. And she did that very intentionally. It was like really smart branding.
It contributed to Asperger getting a bad rap in a sense because people thought he discovered Asperger’s syndrome. No he did not; he discovered the whole spectrum. But Lorna knew, particularly because she was the mother of an autistic child herself, that for parents to accept a diagnosis of autism, for their children, and even for some young adults to accept a diagnosis for themselves, she knew that the term autism was so thoroughly associated with nonverbal children and Kanner’s cases and also carried a burden of shame and stigma from the refrigerator mother era.
She knew that if she could create a diagnosis that meant autism but didn’t say autism that it would catch on. And boy did it ever. As you know Asperger syndrome and PDD-NOS became incredibly popular diagnoses. So they both extended the spectrum and destigmatized [it] by leaving behind the word autism. But now it is all folded into the autism spectrum disorder umbrella, which is probably good because as a psychiatrist told me, the DSM is really not about diagnoses, it’s about reimbursement. If there’s just one check box that you have to check to get the reimbursement for services, that probably streamlines the process for families
AP: But I think that the term Asperger’s still is used quite frequently in the media.
SS: Yeah and also by autistic people themselves. It’s a cultural identity. I have often reflected on the fact that “Boy, I sure wish I could get into a TARDIS and go back and talk to Hans Asperger and say, ‘Do you realize that at some point, young adults with autism are going to start calling themselves aspies and wear it as a badge of pride?’” I’d love to see his face when he learns that because I’m sure it’s not quite what he expected.
Although, one of the most interesting things I came across was in one of his very late papers written just before he died; [it was] a speech he gave in Switzerland; he predicted that autistic people who “valued their freedom” would resist behavior modification to make them indistinguishable from their peers. I thought that was a really insightful comment and it certainly turned out to be true.
AP: Very, very true. And it’s just something that I personally have always disliked–this idea of having to conform. Of course in certain situations I think it’s cool to act different parts. Even neurotypicals act differently in different situations. It’s not just an autistic thing to adapt to your environment and play a part that might not be who you are. That’s a normal human thing that everyone does. Maybe autistic people are less prone to do it but I know for a fact that on Wrong Planet you see people who always talk about having to put on an act in society. Do you really think there’s ever going to be a future where they don’t have to do that–where society is just going to accept everything?
SS: No. I agree with you and I want to point out a crucial sub-theme in my book that no one has asked me about in interviews and is really important and has been overlooked. Asperger was working for Nazis so, in order to protect the kids in his clinic and present this broad conception of autism, he really had to resist pressure from his peers. And I’m sure he had to make very dark agreements with certain things. For instance, he took a loyalty oath to Hitler and that seems horrible now but if he hadn’t done that he would have lost his job at the university and the kids in his clinic would have been immediately taken away to a concentration camp or a “killing ward” as they were called. So Asperger really had to resist peer pressure.
When Asperger described his growing up, it’s clear that one of the reasons why he became fascinated by these outcast loner kids was that he himself was an outcast loner when he was young. In other words, he had many autistic traits as well. I’m not going to say that Asperger was on the spectrum because I’m very conservative about retro-diagnoses but it’s clear that he had some autistic traits.
AP: You did retroactively diagnose some people though. Isn’t that right?
SS: Yeah, Henry Cavendish and Paul Dirac. But I didn’t do the retro-diagnosing in either case. That’s another thing some people said about my book. “Well Silberman isn’t a clinician.” Well you know who was a clinician? Oliver Sacks. And that’s who retro-diagnosed Henry Cavendish.
Paul Dirac was retrodiagnosed by his biographer Graham Farmelo, only after much discussion with Dirac’s relatives and friends. I talked to Farmelo. It’s not like he rushed into calling Dirac autistic. It was that he could not avoid noticing that Dirac’s behavior was classically autistic.
I don’t think there’s a single person I retrodiagnosed. Even Hugo Gernsback, the HAM radio and science fiction entrepreneur, who I write about in the chapter called “Princes of the Air;” he was retrodiagnosed by his biographer Gary Westfahl who was one of the most respected authorities in science fiction history.
But Leo Kanner ends up blaming parents for autism because his peers were putting pressure on him to do that. So in a sense, many of the bad things that came out of early autism history were caused by Leo Kanner acting like a neurotypical while the good things that came out of autism history from Hans Asperger’s clinic came from Hans Asperger acting more autistic. I think that’s an interesting quiet subtext in my book that deserves some attention.
AP: Speaking of Oliver Sacks, he recently passed away. You were a personal friend of his. Isn’t that right?
SS: Yeah. Oliver Sacks read The Geek Syndrome and he liked it. And his assistant called me in 2001 just as I was going through security at an airport on the way to New York City, where [Sacks] lived. She said, “Hello. I’m Oliver Sacks’ assistant and I just want to tell you, Oliver enjoyed your article, The Geek Syndrome, very much.” So that was fabulous news, and me in my over-the-top enthusiasm, said, “Oh that’s great. I’m flying to New York right now. Why don’t I come visit?” So I came down to the office [and] saw Oliver, who was wearing his bathing suit when I met him.
AP: Was he swimming?
SS: He had been swimming. He swam every day of his life. And he mentioned he was going to London. So I very naively said, “why don’t I come with you?” I didn’t actually fly over there with him but I did meet him in London several days later and ended up writing a profile on him for Wired Magazine.
One of the main reasons why we became friends was that Oliver then was a closeted gay man and I figured that out in the course of writing the profile. And I am an out gay man and, not only that, I became an out married gay man. I think as much as a role model as Oliver was for me in a million ways–and his writing was very much one of the main inspirations for my book–I think in my tiny way, I was a role model for him of being a gay person who was at ease with himself and had never had to grow up with the terrible burden of guilt that his mother had laid on him when he was a teenager because he came out to her as a teenager. And she said, “You’re an abomination. I wish you’d never been born.”
AP: That’s horrible.
SS: It’s horrible and he bore the scars of that remark for the rest of his life. And he eventually became deeply closeted. I helped him accept the fact that he was gay and I was very very happy when he eventually met a wonderful young man named Billy Hayes who is a brilliant writer and photographer (and handsome as hell) and they fell in love and traveled all over the world together. It was such a beautiful thing to see because I remember Oliver nearly weeping as he would tell me that he would never have the chance to fall in love again.
AP: Wow. Why don’t you talk about the section of the book about the neurodiversity movement, which I found really fascinating. I think you started off talking about me, if I recall.
SS: The very first sections of the chapter called, In Autistic Space, are about Temple Grandin because she was one of the first autistic adults that anyone had ever seen in real life. People had seen Rain Man but when she appeared on the scene, there weren’t that many “out” autistic adults.
Something that everyone forgets is that when she wrote her first book, Emergence, she was billed in the introduction by Bernie Rimland as one of the first “recovered” autistic people. And I found that fascinating. What that reflects is how narrow the scope of the diagnosis was. Because the notion that an autistic adult could have a PhD and be a professor of animal science at a prestigious university was impossible unless she was “recovered.” So that’s how she billed herself when she first started talking at autism conferences. She very quickly realized that she was very autistic. She was just an autistic adult who had developed in some ways and has been developing since.
I also talked about the Internet, which was in part built by autistic people. I write about how one of the very first social networks that was open to the public was built by an autistic guy in the Bay Area named Lee Felsenstein and he explained to me how it was his own feelings of being excluded from neurotypical society, which he had no idea was causing that for years and years; he only got diagnosed late in his life, like most people in his generation.
The Internet gave autistic people a place to form communities and to share their stories. And once autistic people started being able to talk to each other directly, without having to talk through clinicians or through neurotypicals, they figured out a lot of commonalities in their experience. One of the things I think has been really valuable and is a promising area of research if scientists can figure out how to get a handle on it, is that one of the first things that autistic people talk about (when they can talk to other autistic people) is sensory difficulties–how uncomfortable they can be made by things such as fluorescent lights and the wrong kind of clothes and tags. So autistic people started to be able to share their experiences.
When I looked at some of archived conversations from Autism-L, which was an early mailing list on Usenet, there were a lot of people asking, “does Kanner Syndrome persist into adulthood?” They actually had to figure out for themselves that they were still autistic, even if they’d been diagnosed with autism as a child.
Eventually what happens is the diagnosis becomes available to a wider range of people and then Alex Plank and Dan Grover build Wrong Planet because the existing sites for autistic people, suck basically. And you guys wanted to build something better because you were already such digital natives, so immersed in the Internet and so adept with its tools, and even amazingly adept at doing press releases. You knew exactly “social network built by teenagers? That’ll hook the news media.” And it did and I probably read those stories.
AP: It was amazing how many news stories we were able to get in. All I had to do was email reporters and they were like “alright, I’ll write a story on you.” And repeatedly, it just kept happening.
SS: What year did Wrong Planet launch again?
SS: I was probably like “I’ve gotta right about this.” I guess I didn’t or maybe I did. I don’t remember. It would be in Wired news, most of which the archives are lost. You guys were really good at what you did. It was in part because the environment of the Internet was built by people with autistic traits. I’m not surprised that you guys were very comfortable in that environment.
Out of that, eventually came groups like ASAN that used that platform that was created by the first generation autism advocates like Jim Sinclair in order to actually exert an impact on the making of public policy and the formulation of the diagnosis.
AP: One thing you didn’t mention was the fact that ASAN used Wrong Planet and they would write stuff on the front page. And I ended up going to IACC meetings with ASAN when it was really not many people. It was just Ari, my girlfriend at the time, and a couple other people and we would just go to the IACC meetings and that was during the same time as the Yale Child Study center controversy.
SS: For me, the arrival of autistic self-advocates at the end of the book is like the natural climax because, for the previous 400 pages, autistic people had been defined by others and finally, in part because the diagnosis is finally applicable to adults, autistic people get to define themselves. So there’s a whole generation of activists coming of age now, who have been empowered by not just the previous generation of neurodiversty activists but also by previous generations of disability rights activists. That is the huge million-dollar-point about neurodiversity that often gets overlooked.
The neurodiversity paradigm builds a bridge between autism and the disability rights movement and sees autism through the lens of the social model of disability. Disabilities are not absolute states. Something can be more disabling depending on how much accommodations society makes for it. Being in a wheelchair used to be completely disabling but now we have wheelchair accessible buildings and curb cuts and ramps. It’s still hard but people can go to class in college because they can get into the building.
The next generation of autism activism, I believe will in part focus on how can we make the world a better place for autistic people and their families.
AP: That also brings up one last issue. None of the money seems to be going to that. You wrote that article in the LA Times about Autism Speaks not really speaking for people with autism. What do you think is going to happen (because there doesn’t seem to be much changing there)?
SS: I actually think things are changing. Although Autism Speaks president Liz Feld reacted very defensively once a neurotypical writer appeared in the LA Times. But I actually think that it is inevitable that Autism Speaks eventually re-frames its agenda away from endlessly looking for a cure or causes of autism. We’ve been looking for causes of schizophrenia for decades. It turns out to be very complex genetic condition and autism turns out to be a very complex genetic condition with environmental factors.
I really think it’s a hangover of the anti-vaccine hysteria that all this money is being poured into looking for causes and cures. The Government Accountability Office, in June, reported that investment in research that improves the lives of autistic adults has actually fallen in recent years, which should be a national scandal.
We don’t even know how many autistic adults are out there, which should be a national scandal. There was a study in England to try to find undiagnosed autistic adults in the community and low-and-behold, they discovered that there were as many autistic adults as there are autistic kids. What does that suggest? That suggests that, in fact, this whole autism epidemic [idea] is completely wrong. And we haven’t done a study of autism prevalence among adults in America. The science hasn’t even started yet in many ways.
One of the things that I hope to do [with] my book is to inform people that if they think they’re taking the challenges of autism seriously by investing in endless searches for causes and potential cures, they’re not. We will only be taking autism seriously once we treat autistic people better and give them tools to live happier healthier more creative more engaged and productive lives.
AP: It’s kind of ironic that the only people creating those tools right now are people with autism themselves.
SS: Yeah. Well, there are some neurotypicals who are trying but the problem is that services and resources for autistic adults are always either nonexistent or completely scarce. And yet organizations like Autism Speaks think nothing of sending millions of dollars to the Beijing Genomics Institute to find more candidate genes. I love science. I think autism science is great. I think autism science may eventually produce some really important discoveries. Seizures are a really difficult and potentially fatal problem for autistic people. I’m certainly not against researching and even medical research but we have to as a society re-frame our agenda so we’re taking care of autistic people who are already here instead of focusing so much on trying to prevent them from being born.
AP: That’s another thing that’s scary considering all the great people in the book who made important changes to the world.