This is point of inquiry for Tuesday, November 17, 2015.
Hello and welcome to Point of Inquiry. A production of the Center for Inquiry. I’m your host, Lindsay Beyerstein. And my guest today is science journalist Steve Silberman. He’s the author of the new book Neuro Tribes The Legacy of Autism and the Future of Neurodiversity. People have probably been exhibiting autistic traits like social awkwardness and repetitive behaviors for the entire history of our species. But autism didn’t become an official diagnosis until the 1930s. This fascinating book, Steve, explores how our concepts of autism have evolved in step with society’s attitudes towards nonconformity in general. Autism was once defined as an extremely rare disease caused by deviant mothering, but it’s now understood as a set of traits that are found to varying degrees in most people, including those of us deemed neurotypical or non autistic. We’ve also come to understand that paradigm radically. Autistic habits of mind, like systematic thinking and passionate unusual interests, can be great assets. In fact, Steve argues, people with autistic traits have played an outsized role in shaping our modern digital world.
The age of the Geek might equally be called the age of the spectrum. Steve, welcome to the program.
Thank you. It’s great to be here.
The book is about how our understanding of autism has changed, and you make it really clear that we’ve known for a long time that isn’t this hereditary. So presumably people on the autism spectrum. Always been with us. But it wasn’t until really recently that two semi independent investigators characterize this condition. What was it about us? Were we not ready to see it until that particular historical moment?
Well, one of the things that I learned by writing this book is how young and in many ways still primitive a science, psychiatry and psychology are. And so, in a sense, autism emerged out of this very fuzzy and heavily stigmatized category of what we’re called feeble minded people. And so in the 19th century and even the 18th century, there were, you know, these huge institutions, say in Britain and there were many feeB, quote unquote, feeble minded people put there. And one of the things that’s very clear is that some of the first descriptions of autism were written in really, I believe, the 19th century or perhaps late 18th century by John Langdon down, who was one of the founding fathers of British psychology. And he made beautiful and very accurate descriptions of autistic children in a place called Earles with asylum in Surrey. But, you know, he didn’t invent a term for it. He simply described their behavior.
He even described what parents now called regressive autism, where a child would appear to dramatically lose skills at some point in early childhood. But because he didn’t come up with a term for it and because, in a sense, psychology wasn’t ready to make those distinctions. It wasn’t singled out as a diagnostic category until, as you mentioned, in the early 1940s, two clinicians who described autism very differently, by the way, came up with both came up with the term autism. And it’s long been believed that these two clinicians, Hans Asperger in Vienna and Leo O’Connor in Baltimore, were working completely independently. But one of the biggest scoops in my book, actually, is that when Leo kind of quote unquote, discovered autism in 1938, which he he ended up getting most of the credit, he was actually working with Asperger’s, former chief diagnostician, a guy named George Frankl. So Connor actually had the accumulated expertize of Asperger and his team at the point when he, quote unquote, discovered autism. So it was really Leo O’Connor who made the diagnosis famous in a sense in America while also suppressing knowledge of Asperger’s work. So it’s that is a very deep and and somewhat convoluted and complex history that I explore neuro tribes.
So you take a sort of 30000 foot view. The autism spectrum. We now know is incredibly diverse. What are the cardinal features that all autism has in common? Are there any.
Yes, I would say so. I mean, the sort of main diagnostic points that get expressed in a million different ways in people’s lives are that autistic people seem to have trouble reading social signals. So reading body language and tone of voice and facial expressions.
And at the same time, autistic people tend to have what you know, what are described as repetitive interests or repetitive behavior. Another way to look at some of those interests is to see them as passions or fascinations. That’s a way to look at them without automatically sort of pathology izing them. But some combination of repetitive behavior and difficulty reading social signals and real time seems to distinguish the spectrum.
Can you talk a bit about the differences in the vision that Asperger brought to understanding autism as opposed to Connor?
Yes, well, Asperger was working in a very special place in the mid 1930s when he discovered autism. His clinic, which was called the Children’s Clinic at the University of Vienna, was a sort of a combination clinic and school. So it wasn’t just a place where parents would drop their kids off for, you know, a two hour evaluation or whatever. It was a place where kids who were having serious challenges at school or at home came to live for weeks. And that gave the clinicians as the Asperger’s clinic the chance to observe them in very close quarters, not just in sort of evaluation sessions, but at play, at rest. In classes because they had classes in a wide variety of subjects there, they had music classes, they had physical education. And so the clinicians and as for his clinic were really observing the kids in all aspects of their lives and their motivation. The clinicians motivation was to help find ways for these kids to succeed because many of them had come there, because they’d been sent there after being expelled from schools or they were sent there by the juvenile court like they were considered juvenile delinquents or rebels, troublemakers. So in many ways, Asperger’s Clinic was a place of last resort for parents. So these kids were not, you know, just mildly impaired or whatever. They had run into serious problems with authority.
But at the same time, the clinicians were primed to look for strengths and things that could be rehabilitated rather than just characterizing pathology.
Yes, that’s exactly right. And in fact, Asperger and his team were very, very motivated to find ways for these kids to express the best aspects of their particular interests and their passions. And so they really listened to the children in shaping their methods of pedagogy so that they were appropriate for the kids and and the way that their minds work. That’s one of the most radical things that Asperger said, was that he said that he had learned a lot by listening to his patients, which is something that you would not really find American, you know, psychologists at the time saying. And so, in a way, it was a very, very progressive setting, particularly considering what happened to it, which is that in 1938, the Nazis marched in from Germany, annexed Austria for the German fatherland and Asperger’s bosses and colleagues, many of whom had been Jewish before. The Jews were, of course, forced to flee the country or were taken to concentration camps or committed suicide.
And after his bosses became Nazis. So, you know, it was a horrible situation for Asperger and his children and the children in his clinic. Connor, on the other hand, was had a very different mission. He was one of the first child psychiatrist or child psychologists in America. He was really trying to prove that child psychiatry was an empirical science with with scientific validity. His clinic was in many ways more traditional, although he did actually, interestingly enough, set up a clinic that was very much like Asperger’s. And that was where George Frankl, who had been asked for his chief diagnostician, evaluated Conner’s first autistic patients. And so in 1938, Leo O’Connor saw a guy named Donald Triplett. He didn’t know quite what to make of him. Connor had already written the leading textbook on child psychiatry. And there were many, many descriptions of conditions that were somewhat like autism and something like Donald’s behavior, but kind of couldn’t quite figure out what to do with Donald and sent him to George Runkel. And George Truncal by then had seen probably more than 100 autistic children and had also watched autistic children grow up into young autistic adults.
So Asperger, you know, knew that autism was a a lifelong condition that required support from teachers and parents and the whole community. Whereas Connor framed it much more narrowly as a very, very rare form of what he called childhood psychosis.
Tell us about the little professors that Asperger sign his clinic and connected with and who went on to become the foundation of some of his most famous writings?
Well, that’s the thing. This is another thing that I uncovered in my research that requires a rewriting of history. If you if you look at the basic timeline of autism’s discovery, as it’s been reiterated in hundreds of textbooks and Wikipedia, it’s that, ah, someone may have directed Wikipedia by now. But anyway, they basically say that, you know, Conner discovered autism in 1943. And then a year later, this guy, Hans Asperger, came out with a paper describing four, quote unquote, high functioning children. Well, it turns out that Asperger actually saw a much broader variety of children and children at all points on the spectrum, some who would never probably be able to live on their own without an almost continuous care and were unable to speak others. You know, one of his former patients became an astronomy professor at the same time, was still blatantly autistic, as Asperger described him. So Asperger understood that autism and, you know, genius could coexist in the same person. And so basically the reason why Asperger only described children who appear to be high functioning. And by the way, I hate that label because I think both labels high functioning and low functioning, obscure the truth in some way. Actually, what was going on, I discovered, was that Asperger was telling the Nazis, who remember were his bosses by that point only about his, quote unquote, most promising cases. And that’s because by 1938, when he started describing those cases, the Nazis had launched a secret extermination program against disabled children and adults. That was actually used as kind of a practice run for the Holocaust.
So, in effect, he was advocating for these kids. Yeah. And by trying to sell them as incredibly promising little geniuses that could be useful to Hitler.
Yes, exactly. And in fact, one of the great historical ironies, I don’t think I spell it out exactly in my book. Maybe I did. But one of the great historical ironies is that Asperger suggested to the Nazis that the kids in his clinic would make good codebreakers for the Reich. And, you know, they didn’t take that advice because they were busy exterminating them as to create a master race. However, no one notices that at Bletchley Park, the great code breaking the center of, you know, in Britain where the allies cracked the Enigma code. Well, Alan Turing, you know, they say had many autistic traits. So in a sense, I believe the allies got the best of neurodiversity. You could say, in using it against the Germans.
It’s a really interesting chapter in the book where you talk about ham radio and sci fi as kind of incubators for developments of tech culture, a forward thinking culture and also autistic culture. Can you talk a bit about that?
Sure. One of the kind of delightful discoveries that I made was that there was a guy named Hugo Gern Spock, who was a very early tech entrepreneur. And in many ways he was kind of one of the first sort of 20th, 21st century, even style tech entrepreneurs in that he was all about empowering amateurs to have the same equipment and the same knowledge as specialists and scientists. So starting really in the 19 teens like so early, he started a mail order electronics catalog and he popularized ham radio, which was, you know, relatively inexpensive. You could you could make these little crystal detectors that would pick up ham radio signals, which were, by the way, Morse code at first. And, you know, you could sell them for four inexpensively. And so basically kids or adults who wanted to communicate with other people over long distances could create these little kids. And and, you know, start talking to people enjoying this kind of global conversation at the same time. Hugo Burns back was inventing pulp science fiction as a mass medium. So his his two great business ventures really were ham radio and pulp science fiction. And so he made many of those magazines like, you know, thrilling stories or whatever that you could buy at the drugstore for a dime. And his his genius touch was to have the readers of all those magazines be able to get in touch with each other directly, like they didn’t have to go through the magazine to get in touch with each other. So part of what Gurney’s back was. Going was was a community, but it was a community that did not require face to face interaction. You could do it through the mail or if you had a ham radio kit, you could do it through radio. And, in fact, do it through Morse code. Well, not surprisingly, those methods of communication proved very agreeable for the kinds of people who would find face to face communication difficult or taxing. And so I spoke to several older people on the spectrum who, of course, did not get their diagnoses until usually the 90s because that’s when the diagnosis of autism and Asperger’s syndrome became available to adults really in America. Not before that. So these these guys have been and they were mostly guys, but they had been through, you know, decades of not knowing why they were struggling so much in daily life and why they felt alienated from everyone around them.
Anyway, so Guernsey back laid the groundwork for networks of remote communication. And then out of that emerged the early Internet, because most of the guys who who guys and women who built the early Internet were both ham radio freaks and science fiction fanatics. And so basically networks of remote communication that Hugo Garns back popularized in the early part of the 20th century, became the foundation of the modern digital world. So, you know, I started writing about autism for Wired. And, you know, there was kind of a broad sense that geeks, you know, had somehow participated in the creation of the Internet, as it are. Well, I really traced it back much earlier than I thought I would to this guy, Hugo. Hugo Burns back, who himself had many, many eccentricities and kind of ritualized aspects of his behavior.
His friends tended not to be close personal friends of his own person, but sort of experts in subjects that he was interested in, who he would write to through the mail. He was a big champion of the work of Nikola Tesla, who is, you know, an unbelievably visionary inventor. Sure.
Yeah, I know. I can’t say that Tesla himself is on the spectrum because I don’t know. But he was not neurotypical. He had many traits. And, you know, he had many eccentricities that look like the spectrum. However, in Hugo Garns backs case, his biographer, a guy named Gary Westfall, told me who studied girds back, you know, in great detail, told me that he believes that Garns back was definitely on the spectrum.
It’s interesting, you know, every generation sort of thinks that they invented the things that they’re into, like sex or fan culture, but it’s so much older. I was fascinated to learn that there were people who were into sci fi and futurism who were founding alternative lifestyles in Greenspan’s day.
Oh, I know. No, that’s Tom Ewan’s and stuff. Yeah. No, I love that stuff, actually.
And it’s also, you know, frankly, in my book, it’s kind of a relief to to read about that stuff. You know, after reading about the Holocaust, etc., you know, but yeah, they had there was sort of a network of communes that they called Flanders Shacks slams. Were these characters in a in a story that really resonated with early science fiction fans about a race of genetically engineered mutants, basically, who were especially adapted to living in modern technological society.
But the genius twist in the story’s plan was that they were the who, the quote unquote normal humans were not the heroes, but the villains. And they they began, you know, exterminating this lands just as the Germans were exterminating cognitively disabled people. And so the science early science fiction fans organized themselves into networks, mostly through the mail. They would also have conventions and visit each other. But they had, you know, like this was one household that, you know, would have a library. They could do their art. And it’s because they felt that they couldn’t really relate to non science fiction fans who they who they called mundanes, which I thought was hilarious.
And so you really see the beginnings of geek culture and then the beginnings of artistic culture in early science fiction fandom and ham radio.
It’s kind of interesting in the book. I feel like there’s there’s sort of a parallel between living openly and happily as autistic in ways that are congenial to people with autism and other kinds of alternative lifestyles. And I don’t want to trivialize it. I mean, people choose to be autistic, but at the same time, there is it feels like there’s a theme in the book about people just choosing to live differently in society. Can support that a.
Right. Well, you know, I don’t think it’s any accident that. The guys who was really very deeply involved in using electric shocks to modify the behavior of autistic children at UCLA in the 70s turned out to be this guy, George Rekers, who went on to become one of the founders of the, whatever it’s called, the American family, something or other. But, you know, this right wing anti-gay marriage group. That guy ended up becoming one of the biggest sort of expert witnesses testifying against gay marriage and gay adoption until he was, by the way, found in an airport with a, you know, a guy he’d met on some hustler’s side, you know, who he claimed was lifting his luggage or whatever. But, you know, basically the idea behind the really brutal behavioral modification techniques that were used against autistic children in the 70s and against, quote unquote, effeminate boys, because that guy was involved in both projects at UCLA. The idea was that it’s easier to change the individual’s behavior than it is to change society. And then, you know, once you start thinking in that direction, then you sort of stop at nothing. You know, so it’s like if a kid is flapping his hands, even though it’s a relatively harmless way of, in fact, modulating anxiety, you know, you give the kid electric shocks and eventually they’ll stop flapping their hands. But at what cost?
And so, you know, obviously, there are many, many, many parallels between the journey of the gay community towards autonomy and self-determination, because, after all, homosexuality was listed in the so-called Bible of psychiatry, the DSM, until 1974. So, you know, me and my husband and I were defined as mentally ill, you know, by the Bible of psychiatry until 1974. And there is a crucial difference, though, which is that autism can really be profoundly disabling in ways that homosexuality it’s more contextual, like obviously if you’re being bullied every day. It can be terrible to be gay or terrible to be autistic. But there are certain things autistic people struggle with that aren’t part of homosexual rights that, you know, people of all sexual orientations, if you just leave them alone, they’ll be fine.
They don’t need additional support to just be normally sexual as they are, whereas autistic people often do need a lot of support. That’s an interesting that’s actually an issue that I wanted to get into was the idea of expanding the diagnosis of autism so that more people qualified for services. When did that happen and how did it play out?
Well, what happened was in the really in the 1970s, a woman named Lorna Wing, who was a psychiatrist in England.
She was also the mother of a profoundly disabled autistic daughter named Susie. She was asked by a public health official to find the families that needed help in a suburb of London called Camberwell. So she started looking for autistic children and their families. And at the time, the definition of autism that was prevailing was Leo O’Connor. So it was Leo O’Connor. So it is very, very narrow. It was so specific that, you know, most people could not get the diagnosis really. And her daughter would have been able to, interestingly enough. But she saw all these kids who had traits of autism that were unmistakably, you know, like autism in some way. But these kids did not meet Leo O’Connors criteria. And so with a research assistant named Judith Gould, she basically came up with the idea of the spectrum. And what helped her do it was that when she first started seeing all these kids who didn’t fit Connor’s narrow model, she was like, what’s going on, Mike? How come no one’s noticed these children before? And then she came across a reference by coincidence, actually, she came across a reference to Hans Asperger’s paper written in 1944. It hadn’t even been translated into English yet. And so she asked her husband, John Wing, who spoke German, to translate it for her. And when he did, it was a revelation. It was like, yes, this is exactly it.
This is as Berger saw the spectrum, too.
Yes, exactly. George Franco, his assistant, used the word continuum rather than spectrum. And what’s interesting is so did Lorna Wing, where Lorna Wing started out talking about the autistic continuum. But I think it sounded too like Durai to her something. So she she ended up adopting the word spectrum because she like that it sounded like more like a natural phenomenon in a sense, like rainbows or, you know, it sounded more alive. But in any case. Basically, Judith Gould and Lorna Wing, quietly behind the scenes, worked with the editors of diagnostic guides like the DSM and also something called the International Classification of Diseases to swap out conures narrow model of autism for Asperger’s, much more inclusive one.
They also created a diagnosis called Asperger’s Syndrome to cover adults and kids who are very highly verbal. You know who their parents would have been incredulous if he had said, well, I think your kid has autism because autism was so associated with kind of non-verbal kids. By that point in history, she thought that if she called it something else, basically, that parents would be ready to accept the diagnosis.
And it is kind of a nice nod to Dr. Asperger, who had been kind of written out of history. Right, exactly. But then Asperger’s got kicked out again in 2012. What happened?
Well, you know, a very honest psychiatrist once said to me, well, the DSM is not really about diagnosis, it’s about reimbursement.
And so by folding all of the, you know, Asperger’s syndrome, by folding all by folding these categories into the one umbrella category of quote unquote, autism spectrum disorder, I think it made it easier for service providers to get reimbursed by insurance companies for kids to get access to services. I think it is really just kind of streamlining of the bureaucracy. I don’t think it was meant to be a, you know, some major decision that Asperger’s syndrome doesn’t exist or something.
So essentially, everybody who qualified for an Asperger’s diagnosis in DSM four ended up qualifying for some other autism spectrum diagnosis. India said five.
Well, in an ideal world, yes, that’s it. We’re still figuring out if that actually is what’s happening. They complicated the issue because they invented a new category called Social Communication Disorder. And in many ways, it looks a lot like autism. And I hear it’s not a very popular diagnosis, probably because there are no services developed for social communication disorder yet. So, you know, this is what I’m about to say is pure speculation, I have to say. But I wonder if one of the reasons why they sort of peeled off social communication disorder was because the rising autism numbers are so startling to people who don’t understand the historical process that I describe in neuro times, too.
It’s kind of an untold story. I, I knew that there had been diagnostic changes to widen the category, but it was a revelation to me when I read your book that, you know, that there’d been this this floodgate, this actual traceable historical floodgate in the 70s whereby autism suddenly became a huge and common thing rather than a rare and streamline.
Right, exactly. And, you know, the important thing to remember is that Asperger’s said back in the 30s and 40s. He said autism and autistic traits are common. Once you learn to recognize them, you see them everywhere. And that’s certainly true. I mean, I don’t you know, I have a lot of autistic friends by now, but. Well, you know, I went to Google London a couple of weeks ago. And, you know, I have to say, there are quite a few people there who at least have autistic traits. But Connor framed autism is very, very rare disorder. And that became a sort of self-fulfilling prophecy. In fact, he once bragged that he turned nine out of 10 kids away who had been referred to his office for an autism diagnosis, specifically by other clinicians.
I mean, he may have been wrong, but I feel like that’s actually kind of a cool thing to brag about, because so often when clinicians get attached to a diagnosis, they see everything that comes along as a diagnosis. And at least he was being rigorous about applying his own standards, even if they were too narrow.
That is true. However, it’s important to note that Conner also believed that autism was a disorder that was particular to upper middle class academic families. Well, it could be the was particular to upper middle class academic families with access to Connor’s office, basically.
So there was a big cognitive bias at play there that he was totally unexamined by Connor. Yeah, exactly.
And then and then after he had his own problems and that he did not describe female fully fledged cases of autism, as he said. So, you know, between the two influences, ads for her not really seeing women, although he did recognize women with autistic traits because he described the mothers of some of his patients as having them. But, you know, Anderson, we’re not seeing women. Connor was not seeing people of color and people of lesser means, basically. And so by the end of even the 80s, you would have to see a specialist who knew what autism was enough to give your child the diagnosis. And old school autism clinician told me she’d been working in the field since the 40s. So she must’ve started working was immediately after Connor. She told me that even through the 80s, for a parent to get a diagnosis, they would have to doctor shop their way through 10 specialists. How many working class families do you think could afford to see 10 specialists to get, you know, before getting there, get a diagnosis?
So it’s not surprising that there has been such bias in in dispensing the diagnosis away from women and away from people of color.
Do you have any idea if there’s any correlation between the sex ratio of people diagnosed with autism and gender roles in society? I was sort of wonder if we had a more gender equal society, whether the number of male and female people with autism would be more even because it seems like the patriarchy is applied behavior analysis, that it’s constantly identifying and correcting all kinds of behaviors in all women that also seem to have kinship with autistic traits like don’t fidget.
Well, I actually think that don’t yammer on about your obscure interests.
Yeah. Not only that, but consider that, you know, for instance, in Asperger’s Clinic, most of the kids came to the attention of the authorities because they were aggressively rebellious. And women are so heavily socialized, particularly in 1930s Vienna, not to be like aggressive and physical and assertive in that way. I think that, you know, that’s a huge confounding factor. Now, it’s become very almost fashionable for geneticists to talk about something that a relatively recent idea called the female protective factor in the genome. But as usual, I think those ideas suffer from a lack of seeing things in historical and social context.
And so I do think that we have a long way to go before really appreciating the different ways that autism expresses itself in women.
Steve, that’s all the time we have. Thank you so much for coming on the program.
Thank you. It was an honor. I really appreciate it.