In 1938, an Austrian pediatrician named Hans Asperger gave the first public talk on autism in history. Asperger was speaking to an audience of Nazis, and he feared that his patients — children who fell onto what we now call the autism spectrum — were in danger of being sent to Nazi extermination camps.
As Asperger spoke, he highlighted his "most promising" patients, a notion that would stick with the autistic spectrum for decades to come.
"That is where the idea of so-called high-functioning versus low-functioning autistic people comes from really — it comes from Asperger's attempt to save the lives of the children in his clinic," science writer Steve Silberman tells Fresh Air's Terry Gross.
Silberman chronicles the history of autism and examines some of the myths surrounding our current understanding of the condition in his new book, NeuroTribes. Along the way, he revisits Asperger's calculated efforts to save his patients.
Silberman shies away from using the terms high-functioning and low-functioning, because "both of those terms can be off base," he says. But he praises Asperger's courage in speaking to the Nazis. "I would literally weep while I was writing that chapter," he says.
NeuroTribes also explores how a 1987 expansion of the medical definition of autism (which was previously much narrower and led to less frequent diagnoses) contributed to the perception that there was an autism epidemic.
Looking ahead, Silberman says that while much of today's autism research focuses on finding a cause for the condition, society might be better served if some of the research funds were directed instead toward helping people live with autism. "I think that society really needs to do a bit of soul-searching about how we're dealing with autism," he says. "We need to get over our obsession with causes, because we've been researching the cause of schizophrenia for decades and we still don't know what causes schizophrenia exactly."
On his problem with classifying people on the autism spectrum as high-functioning and low-functioning
I personally avoid using terms like high-functioning and low-functioning, which are used almost universally. The reason why I avoid it is because I've talked to a lot of autistic people over the years and I have autistic friends by now after working on this book for five years and what they've told me, which I earnestly believe is true, is that people who are classified as high-functioning are often struggling in ways that are not obvious whereas science has shown that people who are classified as low-functioning often have talents and skills that are not obvious.
On Hans Asperger's discovery
What [Hans] Asperger discovered was not what he is usually given credit for, which is this condition called Asperger syndrome — what Asperger and his colleagues at the University of Vienna in the 1930s really discovered is what we now call the autism spectrum and they called it the "autistic continuum." And what that is, is they discovered that autism was a lifelong condition lasting from birth to death that embraced a very wide variety of clinical presentations. So Asperger saw children, who for instance, could not speak and would probably never be able to live independently without constant care and might end up in institutions in Viennese society at the time. He also discovered chatty people who became professors of astronomy and who would talk at length about their special passions for numbers or chemistry, etc. So what he discovered was not just this so-called high-functioning end of the spectrum — he discovered the entire spectrum.
On Asperger's clinic after the Nazis invaded Vienna
The children in Asperger's clinic immediately became targets of the Nazi eugenic programs and, in fact, one of Asperger's former colleagues was actually the leader of a secret extermination program against disabled children that became the dry run for the Holocaust. So the Nazis actually developed methods of mass killing by practicing on disabled children and children with hereditary conditions like autism (even though it didn't have a name yet), epilepsy, schizophrenia. So immediately Asperger had to figure out ways of protecting the children in his clinic. ... One of the ways he did that was to present to the Nazis in the very first public talk on autism in history his "most promising cases" and that is where the idea of so-called high functioning versus low-functioning autistic people comes from really — it comes from Asperger's attempt to save the lives of the children in his clinic. ...
In fact, the Gestapo came to his clinic three times to arrest Asperger and to ship the children in his clinic off to concentration camps or kill them at a so-called children's killing ward. But [the Gestapo officer] had affection for Asperger, he thought he was very good at what he did, so he saved Asperger's life and so that's how Asperger survived the war.
On role the movie Rain Man played in increasing cultural awareness of autism
In 1988, most people in the world who had never seen an autistic adult saw one for the first time, and that person was Dustin Hoffman's character of Raymond Babbitt in the Academy Award-winning film Rain Man. It was an incredible success and for parents of autistic children it meant the end of having to explain to their neighbors, "No, no, no, our child isn't artistic, they're autistic." Virtually no one outside of the community of families and clinicians had heard of autism before Rain Man, and Rain Man introduced this incredibly beguiling, eccentric, instantly recognizable character. ...
I had mothers tell me that when they were out in public with their kids, if their kids started having a difficult moment, that they would often get sour looks from other parents, but literally, within days of Rain Man's release, other parents would inquire, "Oh, is your child autistic? Like Rain Man?" So Rain Man created this wave of cultural awareness of autism more than any of the autism organizations had been able to accomplish in decades before that.
On the connection between vaccines and autism
I completely understand why parents would believe that their child had been rendered autistic by a vaccine for several reasons: one is that autism often doesn't become obvious to both clinicians and parents and teachers and everybody until a child is 2 or 3, which is exactly the age when many children are receiving their vaccinations. Also, the Internet was a new thing at the time, and so the word that there was a theory that vaccines cause autism was spreading rapidly through the same communities in which autism parents were finally able to talk to each other online. So while people tend to stereotype what are now call "anti-vaxxers" [as] these kind of low information people, et cetera, in fact, the people who believed that were often highly informed and read papers obsessively.
But the problem is that nobody had explained to them what had happened with the diagnosis.
On how society deals with autism
Autism is a highly complex and heterogeneous condition that is probably caused by a highly complex and heterogeneous series of interactions between genes and the environment. But one of the arguments that my book makes is that we think that our society is taking autism seriously and dealing with the challenges that it presents by pouring millions of dollars into it. [They'll say,] "Let's find more candidate genes." Well, we already have 1,000. "Let's find more potential environmental triggers." Well, everything from antidepressants in the water supply to air pollution has been identified as possibly contributing to autism. What I say is that at least some of that money should be redirected to things like helping autistic adults live more satisfying, healthier and safer lives, or helping families get the services they need or helping families get a quicker diagnosis for their kids.
TERRY GROSS, HOST:
This is FRESH AIR. I'm Terry Gross. Our understanding of autism has changed over the decades, and that's the subject of a new book by my guest, science writer Steve Silberman. He writes about how autism was first diagnosed in Vienna - research that was ended because of the Nazis. He explains the shifts in medical and social attitudes toward autism and reports on how people who are cognitively atypical are starting their own movement to demand accommodations to some of those differences. Silberman also examines what he considers some of the myths surrounding autism, like that vaccines have created an epidemic. The book is called "NeuroTribes: The Legacy Of Autism And The Future Of Neurodiversity." The introduction was written by famed neurologist and author Oliver Sacks, who died Sunday. Sacks wrote that this book will change how you think of autism. Silberman's articles have been published in Wired, the New Yorker, Nature and Salon. He won the 2010 Science Journalism Award for magazine writing from the American Association for the Advancement of Science.
Steve Silberman, welcome to FRESH AIR. Before we talk about the history of how autism was diagnosed and how our understanding of it has changed, would you just describe some of the constellation of symptoms on the autism spectrum?
STEVE SILBERMAN: Sure. People with autism often have trouble making sense of social signals in real time. And so that's things like parsing facial expressions, interpreting body language, interpreting tone of voice, so they may come across as disconnected from the people around them. For instance, if you're talking to an autistic person, they may be looking off to the side or something. But it's important to remember that at same time that they're doing that, they may be listening very intensely. And, in fact, the words that you're saying may be going deep inside them and having, you know, a big effect, but they may look like they're not paying attention to you. So they're sort of generally having difficulty making sense of the social signals that non-autistic people use to keep each other comfortable and to sort of, you know, radiate liking or disliking. So some autistic people might have trouble making sense of irony or sarcasm, although autistic people are also often capable of extremely dry wit, so it's not like they're humorless or something.
They may also do things repetitively. There is a very typical autistic behavior called stimming or self-stimulation, which is things like a flapping of the hands or fidgeting with a favorite object or whatever. And autistic people do that to regulate their own energy and their own anxiety. And they find it very soothing, actually, to do it. So even though, in the past, psychiatrists might punish them for doing something like stimming, it's actually a relatively harmless thing, as fidgeting is considered relatively harmless for non-autistic people.
GROSS: And there's also a range of how well an autistic person can function in the larger society.
SILBERMAN: That is true, although I personally avoid using terms like high-functioning and low-functioning, which are - they're used almost universally. But the reason why I avoid it is because I've talked to a lot of autistic people over the years, and I have autistic friends by now after working on this book for five years. And what they've told me, which I earnestly believe is true, is that people who are classified as high-functioning are often struggling in ways that are not obvious, whereas science has shown that people who are classified as low-functioning often have talents and skills that are not obvious. So both of those terms can be off-base in a certain way.
GROSS: Most of us are familiar with the term Asperger's syndrome, although that term is officially not used anymore. But the term, which was used to describe people on the so-called high-functioning end of autism, especially people who had a special gift or skill - that was named after Hans Asperger, an Austrian child psychologist who did a lot of research in the 1930s. And that research was ended by the Nazis in World War II. His research was overlooked until the 1970s, but you've done quite a job of bringing new attention to it in your book. What was he finding in his research with his patients in the 1930s before autism had a name because he gives it the name?
SILBERMAN: What Asperger discovered was not what he's usually given credit for, which is this condition called Asperger syndrome. What Asperger and his colleagues at the University of Vienna in the 1930s really discovered is what we now call the autism spectrum, and they called it the autistic continuum. And what that is is they discovered that autism was a lifelong condition lasting from birth to death that embraced a very wide variety of clinical presentations. So Asperger saw children who, for instance, could not speak and would probably never be able to live independently without constant care and might end up in institutions in Viennese society at the time. He also discovered chatty people who became professors of astronomy and who would talk at length about sort of their special passions for numbers or chemistry or et cetera. So what he discovered was not just this, you know, so-called high-functioning end of the spectrum. He discovered the entire spectrum. And he was working with a very dedicated group of clinicians in a situation that was very unusual. It was, like, a combination clinic and school. And one of the things that I found for my book, which is an amazing stroke of luck, was I found the daily schedule in use in Asperger's clinic.
GROSS: Was Hans Asperger recommending any treatment for the children under his care?
SILBERMAN: Well, that's the thing. The whole clinic was, in a sense, set up to be a kind of humane version of society in which the children in his care would learn to relate to each other and in which they would be treated with respect by the clinicians who were observing them constantly. One of Asperger's closest associates was a nun named Sister Viktorine Zak, and she said it was crucial to observe the children, quote, unquote, "down to their very toes." And many of the teaching methods that were employed at the clinic were actually developed in collaboration with the children themselves
GROSS: In 1938, the Nazis invaded Austria, and that changes everything at Asperger's clinic. Many of the people he works with flee. Some of them commit suicide. And he is still trying to do his work. How did the Nazi regime affect his ability to work with the autistic children?
SILBERMAN: The children in Asperger's clinic immediately became targets of the Nazi eugenic programs. And, in fact, one of Asperger's former colleagues was actually the leader of a secret extermination program against disabled children that became the dry run for the Holocaust. So the Nazis actually developed methods of mass killing by practicing on disabled children and children with hereditary conditions like autism, even though it didn't have a name yet - epilepsy, schizophrenia. And so, immediately, Asperger had to figure out ways of protecting the children in his clinic. So one of the ways that he did that was to present to the Nazis, in the very first public talk on autism in history, his, quote, unquote, "most promising cases." And that is where the idea of so-called high-functioning versus low-functioning autistic people comes from. Really, it comes from Asperger's attempt to save the lives of the children in his clinic.
GROSS: So what did Dr. Asperger try to emphasize during the era of the Nazi regime when presenting his research in the hopes that the way he presented it would help save the children - save them from the eugenics movement?
SILBERMAN: In his first public talk about autism, which was the first public talk about autism in history in 1938, Asperger presented the descriptions of his children as a description of what he called whole, harmonious personalities. In other words, he saw the children's gifts as inextricable from the challenges that they were facing in life because they were autistic. And so what Asperger said was that these children could develop in ways that no one could predict, as long as they were given adequate forms of support and education that he was developing in his clinic. And he even suggested, at one point later, that autistic children, when they grew up, could make good code-breakers for the Third Reich. It could be that, you know, the Nazis obviously did not take Hans Asperger's advice and instead set about to killing children that had those characteristics. It could be that the Allies benefited most from the qualities of what Asperger called autistic intelligence in code breaking during World War II.
GROSS: What happened to Dr. Asperger and his clinic during World War II? I mean, he was drafted. What happened to him?
SILBERMAN: Well, he went off to the war in Croatia. And he kept a diary, and he said in his diary once that he was very glad that he never had to kill anyone. He also stayed in touch with all of the people in his clinic and stayed in touch with the progress of the kids there because he was still very interested in how they were doing. What happened to Asperger's clinic is that we bombed it into the ground. And, in fact, the University of Vienna was targeted because it had become the leading intellectual center for what the Germans called racial hygiene. So the former center of learning that Asperger had worked in with many Jewish colleagues had been turned into, you know, a collection of bumbling fanatics and people who thought that Hitler was going to save - you know, save the Fatherland, et cetera. So we bombed not just Asperger's clinic, but the University of Vienna hospital.
GROSS: It's just really amazing that the discovery of autism, the diagnosis of autism coincides with the Nazi eugenics program of wanting to kill people who weren't either racially pure or mentally pure in their eyes. And so just as, you know, Hans Asperger is discovering all these beautiful things in his autistic children, they become targets. It's so sad. It's so tragic.
SILBERMAN: It is so tragic. And, I mean, I have to confess that I would literally weep while I was writing that chapter. And I came across some lines that have just stayed in my head forever, like in the very first public talk on autism ever given in history, which was in 1938, Hans Asperger told an audience of Nazis, including his supervisor, who was a huge fan of Hitler, quote, "not everything that steps out of line or is unusual is inferior." And, you know, in the Nazi context, that was an incredibly dangerous thing to say. And, in fact, the Gestapo came to his clinic three times to arrest Asperger and to ship the children in his clinic off to concentration camps or kill them at a so-called children's killing ward. But that guy had affection for Asperger. He thought he was very good at what he did, so he saved Asperger's life. And so that's how Asperger survived the war.
GROSS: So one of Hans Asperger's former colleagues at the children's clinic at the University of Vienna, Erwin Jekelius, rose through the ranks of the Nazis and became the director of what had been a rehab facility for alcoholics, but under his leadership, became a center for collecting and euthanizing disabled children. And you write that more than 200,000 disabled children and adults were murdered during the child and adult euthanasia programs.
SILBERMAN: Absolutely. And the German government was constantly pumping out streams of propaganda that framed disabled people in general - both children and adults - as burdens on society. And, you know, they had pictures of so-called normal German citizens with, you know, the - literally, disabled people sitting on their shoulders, or they would say, you know, 200 Reichsmarks a week, or whatever, you know, was the cost of taking care of disabled people. And so disabled people were demonized as one of the forces that was acting to corrupt the human gene pool. And so that was how Germans made it, really, a matter of medical efficiency to flush these people out of the gene pool and commit mass murder.
GROSS: If you're just joining us, my guest is Steve Silberman. He's the author of the new book "NeuroTribes: The Legacy Of Autism And The Future Of Neurodiversity." Let's take a short break here, then we'll talk some more. This is FRESH AIR.
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GROSS: This is FRESH AIR, and if you're just joining us, my guest is Steve Silberman. He's the author of the new book "NeuroTribes: The Legacy of Autism and the Future of Neurodiversity." So we've been talking about Hans Asperger, who in the 1930s conducted research on autism by having a child psychology clinic and seeing patients there. This was in Vienna in the 1930s. That research was ended when, you know, after the Nazis invaded Austria. And in the meantime, some of his colleagues fled, his Jewish colleagues in particular. And two of Dr. Asperger's associates who were Jewish - George Frankl and Anni Weiss - fled to the U.S. with the help of a child psychiatrist named Dr. Leo Kanner who was helping other Jewish doctors and researchers come to America. And he got these two people positions at his clinic at Johns Hopkins University.
So it has always been seen as something of a crazy coincidence that Hans Asperger and Leo Kanner basically discover autism at more or less the same time. I think your book shows it's maybe not such a big coincidence - that Dr. Kanner, who is now - who has since been credited for discovering autism and being the first person to write an English text about it - he had a lot of input from the two associates from Dr. Asperger's clinic. So how did Kanner's concept of autism compare with Asperger's concept of autism?
SILBERMAN: Well, this turns out to be very crucial. Kanner framed autism much more narrowly than Asperger. Asperger, you know was running a combination clinic and school, so he was very invested in finding ways for his children to learn and succeed and make their way in life. Kanner was involved in a very different project at a very different kind of institution. Kanner was really launching child psychiatry in America. He was one of the first child psychiatrists in America. So what Kanner did was he framed autism as a very, very rare and strictly defined form of childhood psychosis and he would eventually decide that it was under pressure from his colleagues, actually. He would decide that it was triggered by bad parenting and what, you know, eventually became known in pop-culture as refrigerator mothers although he also blamed fathers.
GROSS: Because they were cold and didn't show any kind of emotion.
SILBERMAN: Yes, they were cold, they were super ambitious, you know. Kanner would say witheringly that several of these mothers have college degrees, you know, as if that alone was enough to indict them in their, you know, alleged role in triggering autism in their children. And so Kanner's blaming of parents had catastrophic effects on families, as you might imagine in that parents who were already dealing with the daily challenges of raising an autistic child - which can be very considerable - had the burden of shame and stigma piled on them on top of that and, you know, parents would be subjected to psychoanalysis for 10 years with a psychoanalyst trying to get to the root of why they hate their child etc. Meanwhile, the children would be put in institutions to remove them from the allegedly toxic parental environment.
GROSS: Kanner was not into the - what we now describe as, like, the spectrum of autism. He defined autism very narrowly. So what was his definition of autism, and what effect did that have in the long-run on how autism was treated and how children with autism were perceived?
SILBERMAN: Kanner framed autism as a - strictly a condition of the first years of life. So he saw it as a form of childhood psychosis. So basically, the diagnosis was not available to adults until the '80s, really. The children who were diagnosed as autistic, which happened very, very rarely because in order to get a diagnosis of autism in the '40s and '50s, you pretty much had to see either Kanner himself or a colleague of Kanner's. And Kanner was extremely parsimonious about dispensing the diagnosis of what eventually became known as Kanner's Syndrome. For instance, he once bragged to another clinician that he turned 9 out of 10 children referred to his office for a diagnosis of autism by other clinicians away without giving them that diagnosis. So what Kanner did was he artificially deflated the numbers.
GROSS: Do you know why his criteria were so narrowly defined?
SILBERMAN: Yes, Kanner actually had, you know, sort of a good reason within his context for defining autism so narrowly. He was proposing the very first form of psychosis that was endemic to infancy. So in order to get it accepted, he had to frame it as something that was unique and rare and newly discovered, and he described it in his landmark paper as heretofore unreported in the literature. Well, that turns out not to be true.
GROSS: My guest is science journalist Steve Silberman, author of the new book "NeuroTribes: The Legacy of Autism and the Future of Neurodiversity." After we take a short break, we'll consider the question is there really an autism epidemic? I'm Terry Gross, and this is FRESH AIR.
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GROSS: This is FRESH AIR, I'm Terry Gross. Back with science writer Steve Silberman, author of a new book about autism called "NeuroTribes: The Legacy of Autism and the Future of Neurodiversity." It tells the history of how autism was first diagnosed, and how the diagnostic criteria shaped our perceptions of autism. The condition was given its name in the 1930s by Dr. Hans Asperger, who's research in Vienna was ended after the Nazi invasion. One of his associates who fled Vienna worked with Dr. Leo Kanner at Johns Hopkins University. Kanner was often credited as being the first person to diagnose autism, credited by people who were unaware of Asperger's earlier work. Dr. Kanner had a much narrower definition of autism than Dr. Asperger did.
Two women basically rediscovered Hans Asperger's research, and they wanted to widen the definition of autism. They thought it was too narrow. How did they end up discovering Aspergers research and what were the results of that discovery?
SILBERMAN: In the 1970s, a cognitive psychologist in London named Lorna Wing who had an autistic daughter and was very aware of the challenges that were faced by families with autistic children in search of services - she and a research assistant did a survey in a London suburb called Camberwell to look for autistic children in the community. And what they found was that there were many, many more of them than Kanner's narrow model of autism would have predicted. So they said, you know, what's going on - I wonder why Kanner drew his model so narrowly. And they figured out what was going on when Lorna stumbled across a reference to Asperger's paper which had still not been translated into English because Kanner had never mentioned it. And her - Lorna's husband John translated it for her, and she immediately saw that what Asperger had seen in Vienna was what she was seeing in London in the 1970s.
And so Lorna quietly worked with the people who were designing the next edition of the DSM to broaden the scope of the diagnosis. And so in a sense, she swapped out Kanner's criteria for Asperger's criteria. And almost immediately, as not only she predicted, but she hoped the number of diagnoses started soaring because what she wanted was for families to have access to the services that a diagnosis would produce. So that was basically how the so-called autism epidemic began - when Kanner's criteria were swapped out of the DSM for Asperger's criteria.
GROSS: So when you say epidemic, you're putting quotation marks around it because you don't think that there was suddenly an epidemic. It's rather that the definition was broadened, therefore more people were diagnosed with having autism.
GROSS: So you mentioned the DSM - that's the Diagnostic and Statistical Manual that the psychiatric profession uses to officially list the diagnoses and what their symptoms are.
SILBERMAN: So to Lorna, the increase in diagnoses was excellent news because it meant that more families were getting the services they needed. But...
GROSS: Right, more people were qualified for those services.
SILBERMAN: Right, but because no one really explained to parents exactly what had happened - that the diagnosis had been completely rewritten - that, you know, autism by the end of the 1980s and the early 1990s was not your grandfather's autism, you could say. It was much more broadly defined because no one ever explained to the lay public what had happened with the diagnosis. When the numbers started going up, parents very understandably became very alarmed, and the media was sort of blindsided by the sudden spike in diagnoses. And, you know, no one thought to interview Lorna Wing about, you know, the diagnostic criteria because at that point, autism was still considered very rare. But we would soon discover that in fact, it was very common, as Asperger knew.
GROSS: So we've been talking about how at some point, people perceive that there's an autism epidemic. Part of that is a result of having the definition of autism broadened, so suddenly more people were being diagnosed as autistic. Were there other things happening that made people think that there was this new autism epidemic and that we need to find out what was causing it?
SILBERMAN: Absolutely. There was an incredible convergence of events towards the end of the 1980s that produced a vast increase in autism awareness. One of them is that in 1988, most people in the world who had never seen an autistic adult, saw one for the first time. And that person was Dustin Hoffman's character of Raymond Babbitt in the Academy Award-winning film "Rain Man." It was an incredible success. And for parents of autistic children, it meant the end of having to explain to their neighbors no, no, no our child is not artistic, they're autistic. No one - virtually no one outside of the community of families and clinicians had heard of autism before "Rain Man." And "Rain Man" introduced this incredibly beguiling, eccentric, you know, instantly recognizable character. Everybody loved Raymond Babbitt, and I had mothers tell me that when they were out in public with their kids, if their kids would, you know, start having a difficult moment, that they would often get sour looks from other parents. But literally within days of "Rain Man's" release, other parents would inquire oh, is your child autistic, like "Rain Man?" So "Rain Man" created this wave of cultural awareness of autism more than any of the autism organizations had been able to accomplish in - you know, in decades before that.
GROSS: So what were the consequences of the perception that there was an autism epidemic and that suddenly more people had the characteristics of autism, as opposed to suddenly more people were being diagnosed with what they already had?
SILBERMAN: Well, right at the moment that the true dimensions of what you might call the autistic community were becoming apparent because the diagnostic criteria had finally been broadened enough to allow these people to become diagnosed. Right at that moment, a guy in England named Andrew Wakefield - who was a gastroenterologist - released an instantly controversial paper blaming a certain form of autism that he claimed was novel on the MMR vaccine. And the - you know, as you might imagine, that both the British tabloid press and the American press went wild, you know, child made autistic by jab, etc. And so there was a kind of worldwide panic about vaccines.
Now here's the thing, I completely understand why parents would believe that their child had been rendered autistic by a vaccine for several reasons. One is that autism often doesn't become obvious to both clinicians and parents and teachers and everybody, until a child is 2 or 3 which is exactly the age when many children are receiving their vaccinations. Also, the Internet was a new thing at the time, and so the word that there was a theory that vaccines cause autism was spreading rapidly through the same communities in which autism parents were finally able to talk to each other online. So, you know, it's - while people tend to stereotype what are now called anti-vaccers (ph) as these kind of, you know, low information people etc., in fact, the people who believed that, were often highly informed and read papers obsessively. But the problem is that nobody had explained to them what had happened with the diagnosis. And Wakefield's paper, which has since been retracted by the Lancet and called a deliberate fraud by the editors of the British Medical Journal, you know, he - instead of saying oh, I'm sorry, you know, I was wrong, he ended up portraying himself as a martyr to this conspiracy between big pharma, the media and corrupt public health officials.
GROSS: When in fact, according to what you report, Wakefield actually had a financial stake in lawyers who were planning to sue the pharmaceutical companies that produce vaccines, vaccines that would have been discredited had his paper been upheld.
SILBERMAN: That's true. And I have to say, people think that the notion that big pharma could engage in a conspiracy on a global scale to cover up, you know, a wave of vaccine injury - is that plausible? Absolutely. Look at what the pharmaceutical industry did with Vioxx where, you know, hundreds or even thousands of people died before this drug was taken off the market. So it was a very believable story, the only problem was it wasn't true.
GROSS: Let's take a short break here, and then we'll talk more about autism and the research behind it. If you're just joining us, my guest is Steve Silberman, he's the author of the new book "NeuroTribes: The Legacy of Autism and the Future of Neurodiversity." We'll be back, this is FRESH AIR.
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GROSS: This FRESH AIR. And if you're just joining us, my guest is Steve Silberman. He's a science journalist who's written a new book called "NeuroTribes: The Legacy Of Autism And The Future Of Neurodiversity."
One of your concerns about the movement to find the foods or the toxins or the vaccines causing, you know, the so-called autism epidemic was that it hijacked the movement from the goal of living with autism and demanding services for autism to the goal of preventing and curing it.
SILBERMAN: Absolutely. One of the founders of the autism parents movement in America was very much like Lorna Wing. Her name was Ruth Christ Sullivan, and she's still alive, and I had the pleasure of interviewing her. She had been active in civil rights when she was very young, and she was also the child of an early feminist, and so she knew how to organize a community. And so by working with a guy named Bernard Rimland, they launched the first organization for autism parents in America. And they did that to throw off this horrible burden of shame and stigma that psychiatrists had put on them. And they successfully fought for changes in laws so that their kids could have access to education for the first time. And not just autistic kids, but all disabled kids benefited from the efforts of organizations like what became known as the National Autistic Society. And so the original autism parents movement was not an effort to cure or prevent autism. It was an effort to build a better world for autistic children and their families. And that was the real story of the autism parents movement until the panic about vaccines began. And then the energy of that movement was diverted into spreading fear and panic about vaccines.
GROSS: That movement has been strengthened, though, recently. And the title of your book, "NeuroTribes," gets to how that movement is being strengthened - you know, the idea that autistic people within a group of other autistic people can feel normal because they create their own norms. They don't have to conform to the lighting or to the sounds or the demands of the, quote, "normal world."
SILBERMAN: Absolutely. One of the things that I did that really informed my book was that early on in my research process I attended an autistic retreat called Autreat that was designed by autistic people for autistic people. And so the whole environment was arranged so that autistic people would be comfortable there. So there were no fluorescent lights. People were advised not to use flash. There was absolutely no pressure to socialize. When I first got there, you know, I had never seen autistic people outside of a medical setting, really, or, you know, outside of the setting of being with their parents. So there were about 70 autistic people of all ages and all level of ability there. And pretty soon, I got used to seeing people standing over in the corner flapping their hands or people who seemed not to want to be engaged socially. One thing that made it very easy to know which people wanted to be engaged was that they were wearing what were called color-coded interaction badges. So if you simply couldn't handle any social interaction, you would wear a red badge. If you were eager for social interaction, you would wear a green badge. And you could, you know, wear different badges on different days depending on how social you felt. And what I discovered was that it was an incredibly comfortable environment. I felt, you know, really free of the need to run around impressing people or, you know, make people feel better. I had a sort of hilarious interaction with a young autistic man one day, which was I asked him how he had slept the night before. And what I was doing was just making conversation, and he looked at me and said, why?
SILBERMAN: And it was a very good (laughter) - it was a very good question. It was - I realized how much energy, you know, non-autistic people spend doing what you might call reputation management, you know, constantly. Every time you enter a room, you know, you're, like, smiling at the most powerful person or whatever. And so there was none of that at Autreat.
GROSS: So, you know, the question is, like, something causes autism, and we don't know, you know, for sure what. Is it genetic? Is it inherited? Does it have to do with something environmental? I mean, I don't think anybody could completely rule that out. So what do we know about the possible genetic link of autism and whether it is a trait that's inherited?
SILBERMAN: We have known since the 1970s that autism is primarily genetic and that it's one of the most heritable conditions in psychology. However, there are also other things going on because not every pair of identical twins is what's called concordant for autism. So one twin might be autistic, another twin might not be. Why is that? Obviously there's some kind of interaction between genes and the environment. When I say the environment, I don't necessarily mean what that word usually means, meaning, like, air pollution or something. That also includes the environment of the womb. So one promising theory is that autism is caused by high levels of testosterone in the womb. Another theory is that one reason why there may be some small true increase in autism in recent generations is that people are waiting longer to get married, and it could be that older fathers are carrying more mutations in their sperm that contribute to autism.
But here's the thing - we've already identified more than a thousand so-called candidate genes that may contribute to autism. Furthermore, each autistic person is, genetically, quite unique. So there's a very popular saying in the autistic community - if you've met one autistic person, you've met one autistic person. And that turns out to be true, even for molecular geneticists. So autism is a highly complex and heterogeneous condition that is probably caused by a highly complex and heterogeneous series of interactions between genes and the environment.
But one of the arguments that my book makes is that we think that our society is taking autism seriously and dealing with the challenges that it presents by pouring millions of dollars into, let's find more candidate genes. Well, we already have a thousand. Let's find more potential environment triggers. Well, everything from antidepressants in the water supply to air pollution has been identified as possibly contributing to autism. What I say is that some - at least some of that money should be redirected into things like helping autistic adults live more satisfying, healthier and safer lives or helping families get the services they need or helping families get a quicker diagnosis for their kids. So I think that society really needs to do a bit of soul-searching about how we're dealing with autism. And we need to get over our obsession with causes because we've been researching the cause of schizophrenia for decades, and we still don't know what causes schizophrenia exactly.
GROSS: Steve Silberman, thank you so much for talking with us.
SILBERMAN: Thank you, Terry. It was an honor.
GROSS: Steve Silberman is the author of the new book "NeuroTribes: The Legacy Of Autism And The Future Of Neurodiversity." Coming up, Maureen Corrigan reviews Jonathan Franzen's new novel, "Purity." This is FRESH AIR. Transcript provided by NPR, Copyright NPR.