In the past decade, autism has gotten more and more attention from the media and the wider culture. You probably know someone with autism or who has a child with autism. Yet despite the spotlight autism has gotten in recent years, several myths and misconceptions about it persist. Understanding the history of autism, and how its current understanding developed, can go a long way in shedding light on these myths.
My guest has written what is probably the most extensive history of the development of autism. His name is Steve Silberman and his book is NeuroTribes: The Legacy of Autism and The Future of Neurodiversity. Today on the show, Steve and I discuss the forgotten history of autism research, how the popular myths we have about autism got their start, theories as to why autism even exists, how parents should approach raising a child on the spectrum, and advice on how to connect with your autistic friends or colleagues.
- How it is that Steve came to write about and research autism
- Why it’s important to know the history and development of how we understand autism
- How is the autism spectrum defined today?
- How folks with autism-like symptoms were treated and labeled before autism was given a name
- The dangers of applying the autism label too broadly
- The early science of autism, and how it was affected by Hitler and the Holocaust
- The problems with some of those earliest autism studies and conclusions
- How the early research of autism affected (and continues to affect) how autism is seen today
- Early theories as to what caused autism
- The good intentions of autism researchers and advocates that often went wayward
- Why autism diagnoses soared in the late ’80s and early ’90s
- Andrew Wakefield and his bogus research connecting vaccines to autism
- Should autism be “cured”?
- Do geneticists have any idea why autism exists?
- What neurodiversity is, and how it helps us understand not only autism, but other neuro-differences as well
- Advice for parents who have found out their child has autism
- The mindset that parents of autistic children should strive to have
- What the Average Joe can do to have better interactions with autistic people
Resources/Studies/People Mentioned in Podcast
- The Geek Syndrome
- The Curious Incident of the Dog in the Night-Time
- Lorna Wing
- Leo Kanner
- Hans Asperger
- Bruno Bettelheim
- The “Refrigerator Mother” Hypothesis
- Andrew Wakefield
- Leashing the Black Dog: A Series on Male Depression
- The Social Model of Disability
- Life Animated
- Uniquely Human by Barry Prizant
- The Real Experts
If you’ve been wanting to understand more about autism, definitely pick up a copy of NeuroTribes. Steve does a great job digging into the nitty gritty of the history of autism research while providing folks — autistic and non-autistic alike — with insights on how to accommodate and support individuals on the spectrum.
Connect With Steve Silberman
Listen to the Podcast! (And don’t forget to leave us a review!)
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And thanks to Creative Audio Lab in Tulsa, OK for editing our podcast!
Read the Transcript
Brett McKay: Welcome to another edition of The Art of Manliness Podcast. Well, in the past decade, autism has gotten more attention by the media and the wider culture, and you probably know someone with autism or has a child with autism. Some of you listening probably have a child with autism. Yet despite the spotlight autism has gotten in recent years, several myths and misconceptions about it pervade the popular culture. Understanding the history of how our conception of autism that we have today developed can go a long way in shedding light on these myths.
Well, my guest today has written what is probably the most extensive history of autism research out there. His name is Steve Silberman, and his book is NeuroTribes: The Legacy of Autism and the Future of Neurodiversity. Today on the show, Steve and I discuss the forgotten history of autism research and some of the popular myths that we have about autism out there, such as it being caused by cold refrigerator moms, certain foods, vaccines, et cetera. Theories as to why autism even exists, how parents should approach raising a child on the spectrum, and advice on how to connect with your autistic friends and colleagues. Really fascinating show that highlights a lot of things that I didn’t know about. After the show is over, make sure to check out the show notes at AoM.is/NeuroTribes, where you can find links to research where you can delve deeper into this topic.
Steve Silberman, welcome to the show.
Steve Silberman: Thank you so much. It’s great to be here.
Brett McKay: Your book is called NeuroTribes. It’s a history of autism research, and we’ll talk later about what this idea of neurodiversity, and what you mean by neurotribes. I’m curious, why did you feel like this book had to be written? A history of the development of the autism spectrum as we know it today? I mean, why is it important for people to understand that, if they really want to understand how we really want to understand autism?
Steve Silberman: Well, here’s the thing. There were so many sort of bad things happening in the world because people did not know the history, and that had been bothering me for years. I’m sure we’ll talk about how I first wrote about autism back in 2001 for Wired. After that article came out, I saw that families were struggling with lack of support and resources for their kids, autistic people were struggling with lack of employment, and yet almost the entire social conversation around autism was whether or not vaccines cause autism. What that comes from is the fact that no one had ever explained the undeniably steep rise in diagnoses that began in the early 1990s. If you read a New York Times story about autism, and The New York Times is the paper of record and very serious, they would always say that the reason for that spike in diagnoses was a mystery, an enigma, a puzzle.
That went on for years and years, and meanwhile I’m tracking all these news items about autism. I’m going, “Really? Why is it still a puzzle? Why don’t we know this?” That was really what convinced me that I needed to start digging back into autism history and sort of see where things went awry, in a way.
Brett McKay: What kickstarted your interest in autism research? You mentioned that Wired article you wrote back in 2001. Why did you start going down this path of researching autism?
Steve Silberman: Well, I’d been writing about science for Wired for a while by then, and I actually came into the autism world in a very unusual way. Pretty much the first question that almost everybody asked me when they hear that I wrote this book is, “Do you have an autistic kid?” The answer is no. If they’re really hip, they say, like, “Are you on the spectrum yourself?” Actually I’m not. I’m neurotypical.
What happened was, back in 2000, I was on a boat in Alaska with more than 100 computer programmers, and the occasion for that unusual gathering was something called a “geek cruise.” It was some guy’s idea to have, like, tech conferences in more interesting places than Holiday Inns in Pittsburgh. We were on this big cruise ship going up the Alaskan panhandle and I noticed that my fellow shipmates on the cruise who were mostly really high level programmers were very industrious, you could say. Like as we were pulling out of Vancouver, they started unpacking routers and stuff from their luggage to upgrade the ship’s communication systems, and they eventually asked the captain to give them a tour of the engine room. They were people who liked to understand how things worked and make them work better.
Sort of the star of the cruise was this guy Larry Wall, who invented a programming language called Perl that is so useful that Perl programmers call it the duct tape of the internet. Stuff like Amazon, and Craigslist, and even Microsoft software would not have been possible to build without Perl. As we were coming back into port, I asked Larry if I could interview him at home, and he said, “Yeah, sure. I should tell you, we have an autistic daughter.” At that point, like almost everyone including most clinicians, I thought that autism was a very, very rare condition. In fact, teachers back then, if they got an autistic kid in their special ed class, would be told, “Really observe this kid closely, because you’ll never see another one. It’s so rare.”
When he said that, it registered, but I didn’t make much of it, until a couple months later I was writing another story for Wired about another technologically very adept family in Silicon Valley. The patriarch of the family had built the first computer in the Middle East way back in the 1940s, and I asked the sister-in-law of the woman I was profiling if I could interview her at home. She said, “Yeah, sure. By the way, we have an autistic daughter.” I thought, “God. What a funny coincidence. I thought autism was rare.”
I was telling that exact story to a friend of mine in my neighborhood café here in San Francisco, and a woman at the next table suddenly interrupted and said, “Oh my god. Do you realize what’s going on?” I said, “What’s going on?” She said, “I’m a special education teacher in Silicon Valley. There’s an epidemic of autism in Silicon Valley. Something terrible is happening to our children.” I got the chills. It was like a really heavy moment, but because I was a science writer, I thought, well, I not only will get the chills, but I can actually look into this and see if it’s true.
I ended up writing an article for Wired called “The Geek Syndrome,” and it was about genetics, actually, and how geneticists had noted that people who have autistic kids often have autistic traits themselves and are often rather gifted in certain fields of science and technology. I pursued that in 2001 with The Geek Syndrome, but it was really the emails that I got for almost, well, 10 years after that article came out, which is very, very unusual for a magazine article, where I became aware of the really serious problems that autistic people and their families were facing in day to day life, while meanwhile the whole world was talking about Jenny McCarthy, and vaccines, and Dr. Andrew Wakefield, and, “Do vaccines cause autism?”
I’d written about Big Pharma, so I knew that the pharma industry is not necessarily our friend, and they’re perfectly capable of doing a huge cover-up of terrible things. But as I dug into autism history, I came to believe that that was not at all the case.
Brett McKay: I think I got this idea, your Geek Syndrome, that kind of goes back to the neurodiversity thing. We’ll get back to that later on, but let’s start with this question. How do we define the autism spectrum today? Then we can take from there, then we can work forward to look back to see how we got to this point.
Steve Silberman Sure. Well, remember that the autism spectrum is incredibly broad. It encompasses people who may never learn to speak, may require almost continuous, 24-7 assistance to get through their daily lives. That’s one part of autism. Another part of autism is, say, the CTO of a well-known Silicon Valley company, who I’ve actually met, who is quite autistic, and yet very successful in his job, his corporate job. It is an incredibly broad range of people. In fact, an autistic person once said to me that autistic people are more unlike each other than neurotypical or non-autistic people are. In a way, that’s really true. There’s a wider range of behavior.
There is a certain sort of core constellation of challenges that people on the autism spectrum face, no matter if they’re CTOs or people who can’t live without daily assistance. That is they struggle with reciprocal social interactions. They have a hard time reading the body language of particularly people who are not autistic. They also tend to have very, very consuming interests. In psychological terms, it’s often called obsessions. They’re sort of very deep and narrow interests. Like if somebody’s really into trains, they’ll find out everything about the local train service. In fact, I have an autistic friend who was absolutely thrilled to go to the opening of the new 2nd Avenue subway in New York the other day. He took Facebook Live videos. People with autism tend to get very, very deeply interested in the things they’re interested in, whether it’s Disney movies or physics. They also struggle to do reciprocal social interactions, like they have a hard time making sense of the little signals that non-autistic people constantly send each other with body language, and facial expressions, and tone of voice.
Many autistic people, I mean, this is not necessarily part of the official diagnosis, but many autistic people also struggle with chronic anxiety, and several other things as well, but really the core constellation is trouble with reciprocal social interactions, and very deep and consuming interests.
Brett McKay: Let’s talk about autism before autism was autism. Because it really wasn’t until the 1930s that there was a name put to it, or that psychologists started recognizing it. Before that time, I mean, how were individuals who showed these traits, these constellations of traits you just mentioned, how were they labeled or treated?
Steve Silberman: Well, you know, they were labeled lots of many different things, because nobody knew exactly what it was, and nobody had sort of described autism as a distinct condition. There was a psychologist in Moscow in the very early 20th century who wrote about a bunch of teenagers who we would now say have Asperger’s syndrome. They were quite intelligent, but they had trouble in social interactions. They were often doing badly in school because they needed kinds of support that hadn’t been invented yet. This woman speculated that they might have some kind of schizophrenia, but she noticed that unlike people with schizophrenia, if you gave them certain forms of support, they would do really, really well, whereas sometimes, particularly before the invention of medication, people with schizophrenia would not do so well.
There was speculation in the early 20th century that maybe there was this kind of schizophrenia, and one of the labels that were slapped on particularly autistic people of color quite often, and probably it still is applied to them, is what used to be called “mental retardation” and is now called intellectual disability. There was sort of a class dynamic going on between who got an autism diagnosis and who got a diagnosis of intellectual disability, which was considered a sort of poor people diagnosis.
There were many, many different labels that autistic people were hidden behind before not only the formulation of the autism diagnosis, but the popularization of the diagnosis, which didn’t really happen until the 80s and 90s, as we’ll talk about later.
Brett McKay: I thought it was interesting, too, people talk about there’s been this uptick of autism, but you know, I know people don’t like doing the historical psychological analysis on people, but you mentioned a few examples from history where people look at the diaries and sort of the interactions people had, or the record of these individuals, and they can be like, “Yeah, that person probably had Asperger’s, maybe.”
Steve Silberman: Right. I try to be a little bit careful about that, because pop culture has gone a little bit wild with that, you know? It’s like, Jerry Seinfeld goes to see Curious Incident of the Dog in the Night-Time on Broadway, and he comes out saying, like, “Hmm. I think I’m on the spectrum.” Well, the problem with that is … I mean, he may have autistic traits. Autistic traits turn out to be extremely common, you know? The thing is, I mean, let’s face it. Jerry Seinfeld is a multi-millionaire and he’s been incredibly successful, and Jerry Seinfeld and Mark Zuckerberg for that matter should not define what autism is. Most people who are on the spectrum have significant, more serious challenges in their daily lives than that.
The whole key to why where you draw the line on the spectrum between autism and non-autism is so tricky is because the spectrum shades imperceptibly into eccentric normality, as the woman who came up with the word, the phrase “autism spectrum,” Lorna Wing, told me. In other words, there’s no bright line between autism and non-autism. There are people who should not get a diagnosis of autism who have autistic traits. Really, the bottom line is, “Is the person struggling in their daily life?” If they are, which can take subtle forms, they should probably get a diagnosis. I’m not into, like, slapping … I mean, I admit Bill Gates, he did have a lot of autistic traits when he was younger. He’s obviously doing very well. People say that Steve Jobs had autism. I met Steve Jobs. I would say he did not have autism. He was an unusual and sometimes disagreeable man, I would say. Also absolutely brilliant. I’m looking at an Apple Macintosh right now, but I don’t think he had autism.
I think it’s possible for people to go a little bit too far in saying, “Oh, everybody’s kind of on the spectrum.” Well, if everybody’s on the spectrum, then nobody needs help, and that’s wrong.
Brett McKay: We have this spectrum idea of autism now, but it wasn’t always that way. In the early 1940s, this is where the history really picks up. Two Austrian researchers, Austria is like the motherland of psychology and psychiatry, they were working independently from each other. They both published papers describing autism. One was Hans Asperger, and the other was Leo Kanner. Is that how you pronounce his last name? “Canner”?
Steve Silberman: It’s “Conner,” actually.
Brett McKay: Kanner. Okay. Kanner.
Steve Silberman: In fact what’s kind of amusing is that even though he was Jewish and from Eastern Europe, for a while when he worked in the psychiatric hospital, the patients would call him, “Father O’Connor.” But actually his name is Leo Kanner.
Brett McKay: Let’s talk about Kanner first, and his conception of autism, because that really set the tone for autism research in the 20th century.
Steve Silberman: Yeah, it sure did.
Brett McKay: What was Kanner’s background, and how did that background influence his description of autism?
Steve Silberman: Here’s the deal. Leo Kanner sort of went down in history, at least until my book was published, as the discoverer of autism. That’s that it said in Wikipedia. That’s what it said in thousands of textbooks. That’s because in 1943, Leo Kanner published a paper where he described 11 of his young patients who had trouble with reciprocal social interactions, didn’t even seem to want to know their own parents, could play on the floor with a pot lid for hours, didn’t seem to want to be interrupted, didn’t even seem to care about their parents. Leo Kanner’s descriptions of autism were very, very vivid, and one of the reasons why they were so vivid was because when he was a young man growing up in Eastern Europe, he was a poet, and so he was an excellent writer. He eventually came to the US and he worked in psychiatric hospitals, and ended up getting a job at Johns Hopkins.
There, he published his paper on autism. Here’s the problem, though. Even though he sort of took credit for discovering autism, what I found out was that he had a connection to a guy who had been virtually forgotten except for his last name, Hans Asperger. Hans Asperger was working in Vienna in the 1930s, in a clinic that was a very unusually progressive place. For instance, the patients would do art together. They would put on plays together. The clinic was not what we normally think of as, like, a place where a kid gets dropped off for a couple of hours for a round of diagnostic tests. It was a place where the kids would live. These kids were sort of at the end of their rope in a way. They were often put there after being expelled from many schools. Their parents considered them very, very difficult. Some of them would end up there sort of at the behest of the juvenile courts.
The kids would stay there for a month or more, and while they were there, they not only were observed continuously while they took tests, while they slept, while they played with each other or not, but they also had, like, phys ed classes set to music in the morning. Asperger would read poetry to the kids. It was a very humane environment, and the idea was that the kids would sort of relearn how to become functioning members of society by creating sort of a model humane, compassionate society in the clinic.
What Asperger knew was that kids with even pretty profound autism could succeed in life if they were given the right kinds of support. I’ll give you an example. One of Asperger’s patients was a young kid who when he was about two years old, started to draw triangles and circles in the sand, and eventually became obsessed with astronomy. Instead of his mother treating that as just this kind of annoying obsession, she supported his interests in … Sorry, in geometry, actually. She supported his interest in geometry. He then went on the middle school, where his teachers thought that he was too intellectually disabled to get advanced tutoring in math. He badgered them into it. They did it, and he eventually went on to become an assistant professor of astronomy at a university by detecting an error in one of Isaac Newton’s proofs in his first year at university. He was a very gifted guy, but he was also very autistic. Like, if people he knew would walk past him on the street, he wouldn’t recognize them, because often autistic people have trouble recognizing faces. Something called prosopagnosia.
Asperger knew that autistic people were capable of great success, but only if they got tons of support from parents, from teachers, from the local community. Asperger also believed that autism was very common, that it was a very old thing, that autistic traits were widespread. He said once you learn to recognize the distinctive traits of autism, you see them everywhere. What happened to this guy? Why did his very broad model of autism, which indeed anticipates what we now call the autism spectrum, why did that become lost knowledge for most of the 20th century?
Well, it’s because in 1938 the Nazis marched in from Germany over the mountains to annex Austria for the fatherland, and they immediately passed eugenics laws to purge forms of hereditary disability from the human gene pool in accordance with Nazi eugenics theory. The kids in Asperger’s clinic became a target of a secret extermination program that the Nazis were running that became the practice run for the Holocaust. The Nazis actually developed methods of mass killing and disposal of bodies by practicing on disabled children. This was a horrible thing, and at the same time, of course they were targeting the Jews. What happened was, two of Asperger’s closest colleagues were George Frankl and Annie Weiss. They were both wonderfully progressive people working in Asperger’s clinic. They had to leave the country or die in the Holocaust. What happened was this guy Leo Kanner, being Eastern European himself, now safely installed at Johns Hopkins, Kanner and his wife decided to rescue Jewish clinicians from the Holocaust. Two of the people that he rescued were George Frankl and Annie Weiss.
Asperger’s work sort of wound down at the height of World War II. He was actually sent away from the clinic to become an ambulance driver in Croatia. The clinic was bombed by us, because the University of Vienna had been turned into a Nazi propaganda machine instead of the great, highly Jewish university that it had been in the early 30s. Kanner saved the lives of Frankl and Weiss, and they were both in his social circle, and Frankl was working with him directly when Kanner quote-unquote “discovered” autism. By the time that Frankl was working for Kanner, he had already seen dozens of autistic people at all levels of ability, from people who could not survive outside of institutions to that kid who became an astronomy professor. Frankl knew very well that what autism looked like, and in 1938, Kanner’s first autistic patient, a guy named Donald Triplet, showed up at Johns Hopkins. Kanner didn’t know what to make of him. In his notes he wrote, “Schizophrenia?” Which is exactly what a clinician would have thought who didn’t know about autism.
The problem was that Kanner developed a model of autism after Frankl and Weiss left, because Kanner was unfortunately unable to get a job for Frankl and Weiss at Johns Hopkins, so they sort of disappear over the horizon, and then Kanner wrote this famous paper in 1943 that described autism, but Kanner, in a truly unfortunate turn of events, proposed that autism was very, very rare. When I was researching his past, I noticed that he had done that in his very first paper as well, which was about syphilis among Native Americans. He insisted that syphilis was very, very rare among Native Americans. Well, it turns out, not so. It turns out that Native Americans did not get very good health care and they distrusted white doctors. In fact, Kanner has sort of hyped his discovery of this Native American with syphilis, and using exactly the same language that he would later hype autism as this exceptionally rare condition.
Brett McKay: Yeah, so Kanner, he just said it was very rare, where Asperger says it was actually very common, and the other difference, too, I noted too in your book was that Kanner had very narrow-defined traits that someone had to show in order to him to be able to say, “You’re autistic.” Whereas Asperger had the more broader range spectrum.
Steve Silberman: Yes, that’s exactly true. You know, it’s not like Leo Kanner was a terribly evil man or anything. He was probably a very good man, but this was the distinction between the mission of Asperger and Kanner that proved to be so fateful. Kanner was trying to establish child psychiatry as a viable field in America. He was one of the first child psychiatrists in America. For him to discover a condition that was, as he called it, a form of psychosis, which it isn’t. For him to discover a form of psychosis that was endemic to childhood, that would be sort of a big scoop for child psychiatry in America. He tried to draw the diagnosis very sort of selectively and specifically, and he ended up in fact focusing on sort of super ambitious academic families. Well, who was in Kanner’s social network? Super ambitious academic families. Several of the parents in Kanner’s first paper were psychologists or psychiatrists themselves.
It turns out that what was rare was having access to Leo Kanner’s office at Johns Hopkins, and he once said in the 50s, I believe, that he had only seen 150 true cases of autism in his lifetime. That was because, as he bragged to another clinician, he turned nine out of 10 kids referred to him worldwide for a diagnosis of autism by other clinicians, away without giving them an autism diagnosis. He would rule out kids who had seizures. Now we know that seizures are very common in autism. He had this mistaken belief that autistic kids are exceptionally beautiful. Well, some of them are, but some of them look more like me. He would not give an autism diagnosis to a kid who had profound intellectual disability. Now we know that intellectual disability and autism can overlap a lot. He tended to only write about white people. Now we know that in fact, people of color also get autism at equal rates.
Kanner had a way of ruling out so many people that is was like a self-fulfilling prophecy that autism was rare. The problem was that for whatever reason he had, Kanner pretty much buried autism research by Asperger in history. He never mentioned Asperger’s name, until I did find one place where he mentioned it. It was in the 1970s. Pretty much decades of damage had been done, and what he said was, “Oh yes, Asperger. What that person discovered was at best a 42nd cousin of my syndrome, and has already received serious attention from investigators.” That’s wrong. In fact, Asperger’s paper had not even been translated into English by that point. Asperger was virtually unknown.
Now, I ask myself, and it’s certainly the first thing I would ask Leo Kanner if he were to appear to me in a dream or something. I would say, “Why did you not mention Asperger’s work? It was like the one other paper that was published virtually at the same time as yours.” People say, like, “Well, it was published in German.” That was Kanner’s native language. People say, “Well, it was published in this obscure German medical journal.” One that Leo Kanner cited all the time in his papers. The notion that, like, Kanner somehow overlooked Asperger’s paper is ridiculous. What I think happened probably is that, let’s not forget that certainly after 1938 and even before that, Asperger was working for Nazis. The Nazis took over the University of Vienna. I suspect that Kanner probably associated Asperger with Nazis even though he refused to join the party, was a member of a Christian youth group that opposed the Nazis, and was eventually banned.
I think Kanner basically said, “Forget that guy. He was working for Nazis. I’m going to be the sole discoverer of autism.” The problem was his model was so narrow that people didn’t even research autism because they thought it was not a promising career, because it was such a rare syndrome, and Kanner already has it covered. In fact, people called it “Kanner’s syndrome.” We see the problem that happened between Kanner’s burial of Asperger and Frankl and everybody else who was associated with Asperger in history. The burial of, you know, really what was an early recognition of the autism spectrum, as meanwhile Kanner goes for decades insisting that it’s rare.
Brett McKay: How did that idea of autism being rare, how did that influence how we as a society think about and approach autism today?
Steve Silberman: Well, it still has a huge effect. In fact, if you think about what I already mentioned is the first question that almost everybody asks me about my book, “Why did you write it? Do you have a kid on the spectrum?” It’s like, I’m a science writer. It’s as if they’re saying no one would write about autism unless they were forced to by circumstances, in a sense. I think that’s an unconscious echo of the belief that autism is rare. If autism is common, as it indeed is, and we now recognize that, then why wouldn’t a science writer write about autism?
I think it tends to segregate people who are interested in autism into this sort of ghetto, you know, where only people who are personally affected by autism would be interested in it. That’s not true. Everybody should be interested in it. It’s a very common condition. We have tended to under-invest in research designed to improve the lives and happiness and security of autistic people and their families, mainly because of the terrible and mistaken idea that vaccines cause autism. We’ve invested millions and millions of dollars in searching for the cause of autism. Is that interesting science? Yes, but we’re doing that at the same time that we’re basically leaving autistic people and their families to twist in the wind without things like programs to help autistic high school students transition into the workplace. They’re basically non-existent.
People ask me, “Where can I find a program for my kid? He’s very bright. He’s very motivated, but I don’t know where he could learn the skills that would enable him to get a good job.” Thus as a result, many, many autistic people who would love to be working, who are very capable of brilliant work, are unemployed and living on disability, and really poor. They struggle to buy groceries every day. This is a terrible situation, and it’s specifically because autism was mistakenly believed to be so rare for decades.
Brett McKay: Kanner also, he put out ideas for, like, what caused autism, and researchers that followed in Kanner’s path kind of tried to come up with cures for autism. I remember you mentioned the frigid mother cause of autism.
Steve Silberman: Yeah, that was Kanner’s idea.
Brett McKay: Yeah. I think it’s funny, because I collect vintage magazines, and that was a common article in the 1950s, was a “refrigerator mom.”
Steve Silberman: Yeah, absolutely. In fact, Kanner and his disciple Leon Eisenberg did not only single out mothers. It’s somewhat of kind of a sexist dynamic that made it about only mothers. Eisenberg in particular was equally down on the fathers of autistic kids, but yeah, basically it was a really interesting situation. When Kanner initially came out with his paper, he speculated that autism was probably inborn, thus genetic. If you think about it, that would tend to limit the role of the child psychiatrist, because what can a child psychiatrist do about a condition that’s genetic? Well, virtually nothing. If it’s psychological instead of genetic, or genetic and psychological, then the child psychiatrist can sweep in and say, “Actually, we know what to do with your child.”
What was often done with autistic children for decades, for most of the 20th century, was that they were put in institutions because of this mistaken idea, initially developed by Kanner, and then sort of popularized, turned into almost a pop culture craze, by this guy named Bruno Bettelheim, who wrote a bestseller called The Empty Fortress, that said that refrigerator mothers … In fact, he compared the mothers of autistic kids to concentration camp commandants. Because he was a concentration camp survivor himself, nobody challenged him. Who would say that a Holocaust survivor was lying? But he was lying. His entire career was a hoax, more or less. He invented degrees that he didn’t have. He got tons of money from the Rockefeller Foundation for allegedly curing autistic kids. Bettelheim was totally bogus, but he blew Kanner’s notion of the refrigerator mother up into this enormous thing.
What was terrible about that was that, you know, there are significant challenges associated with raising an autistic kid. It’s hard enough. What if you were also being blamed not just by your therapist and your pediatrician, but by your neighbors for making your kid autistic? That’s what happened to the parents of autistic kids for decades. Really through the 60s, actually. In fact, I spoke with the parent of one of the first kids to get the diagnosis, this woman Gloria Rimland, whose husband Bernard ended up helping to launch the autism parents movement and to demolish the notion of refrigerator mothers.
She told me that she and Bernard had basically been trapped at home for years trying to raise their son who was very self-injurious. They couldn’t find a babysitter. One night, they go out for dinner with another couple for the first time in years, and they’re having a glass of wine, and they’re having a good time, and suddenly the wife of the other couple turns to Gloria and says, “You know, you just don’t seem like that kind of person.” Gloria says, “What kind of person?” The woman says, “Who would do that to your child.” You can imagine the burden of grief, and guilt, and shame that was piled on to the parents of autistic kids, and it also kept them from talking to each other, because to admit that you had an autistic kid was tantamount to admitting that you were mentally ill, that you didn’t love your child, that you didn’t show your child affection. So much so that they withdrew intentionally into what used to be called the autistic shell, you know?
It was a terrible thing to do to parents. It interfered with science. It was a terrible thing to do to autistic people, because in the institutions, they weren’t going to luxurious autism wards. They were going to psych wards. Locked down wards with adult psychotics, where they were subjected to every wacky treatment from lobotomy to … There was a woman at Bellevue, she was the head of psychiatry at Bellevue, so she had no oversight. You know, it’s not like she even had to submit her experiments to an ethics board. It didn’t happen. She gave a bunch of autistic kids LSD every day for up to nine months in some cases, until she discovered that it was making them more anxious. Well, if I took LSD every day for nine months, I’d be out of my mind, basically.
Anyway, it was really a blot on the history of psychiatry and psychology that autistic people were not only so misunderstood, that their families were misunderstood and demonized, and that autistic people were subjected to these horrible experimental treatments.
Brett McKay: I also think the idea that you can cure it, right? I’m sure like these parents would just, like, they would spend tons of money, do anything, go to enormous lengths to, like, “I want to cure my child of this.” It was probably just frustrating because they’re thinking, “I’m to blame for this, so I gotta go whatever I can to fix it.” I’m sure it was just like kicking against the pricks, and that just devastated them even more.
Steve Silberman: Right. Well, you know, the cure thing really in a sense took off I would say more in the 1990s, and that was when unfortunately Bernard Rimland actually got very into the idea that autistic kids could be cured with dietary interventions or experimental drugs like secretin. Rimland was so turned off to mainstream medicine, really, by the refrigerator mother stuff that he sort of became rogue and went off on his own to do his own autism research. I think he had very, very good intentions. Like, kind of a theme running through my book is people with good intentions who try to do good things and then end up making bad decisions that then cast a shadow over autistic people and their families. Rimland popularized the notion that kids could be quote-unquote “recovered” from autism through dietary interventions.
It is true that if an autistic kid is having some kind of digestive upset that if you change their diet, maybe they’re gluten sensitive or have celiac disease. If you remove gluten from the diet of a kid who has celiac disease, yes, they will very definitely improve their digestive symptoms, and then their behavior will improve, but the problem is that this was all confused with curing autism, which it isn’t. Some kids do lose their diagnoses over time. In that sense they grow out of the diagnosis, but there was actually just a major article the other day that many of those kids who lose the autism diagnosis are then diagnosed with ADHD, or chronic anxiety, or chronic depression. What’s clear is that people who are autistic are born with different wiring, and if they meet the diagnostic criteria for autism when they’re young, they’ll get diagnosed with autism. They may lose that diagnosis eventually, but they still need help and support their whole lives.
Brett McKay: Asperger was ignored for most of the 20th century.
Steve Silberman: Yup.
Brett McKay: Kanner’s idea of autism was sort of a descendant. How did that transition go from autism being rare and having these very specific traits you had to meet in order to be diagnosed as being autistic, how did that go from there to this spectrum that we know today?
Steve Silberman: Well, sort of the avatar of this change was a wonderful cognitive psychiatrist in London named Lorna Wing. Unfortunately, Lorna is no longer with us. I had the really great honor of doing one of the last in-depth interviews with her at her office before she died. What happened was, Lorna herself was the mother of a profoundly disabled autistic girl named Susie. Lorna didn’t have any problems with Susie meeting the criteria for what was then called Kanner’s syndrome. She was a classic Kanner kid in a way. At some point, she was asked by a public health official, because Britain has nationalized health care, which tends to get called “socialist” here in America. This public health official asked her to estimate how many autistic kids were in a London suburb called Camberwell, so that they could allocate the appropriate amount of resources for them.
Instead of waiting for autistic kids to come to her office like Leo Kanner had done, she and a colleague named Judith Gould went out into the streets of Camberwell and looked everywhere. They looked in school records. They looked in hospital records. They looked in clinic records, trying to find kids with autism everywhere they could. What they found was that there were many, many more autistic kids than Leo Kanner’s model would have predicted, but not all of them would have met Kanner’s very strict and narrow criteria. For instance, Kanner wrote about kids who didn’t even seem to want to know their own parents, whereas Lorna and Judith would see like a kid who clearly loved their mom, helped her do the dishes, and then would retire into their rooms to listen to their favorite record 25 times over.
It was as if these kids had bits and pieces of Kanner’s syndrome, but perhaps not enough to meet the full criteria, but boy, were there ever a lot of them. You know, like, more than Kanner’s model would have predicted. Lorna did not know what to make of this data. Like she originally thought, “Maybe Kanner’s completely wrong, you know, his conception of autism is wrong.” Then she came across a reference to this paper by this guy who no one had heard of named Hans Asperger, and it was in German. Luckily, her husband John who was a schizophrenia researcher spoke German. He translated it for her, and when she read Asperger’s paper, and this was now more than 30 years after it was written and forgotten, she said, “This is it. This is exactly what we’re seeing in Camberwell.”
Then Lorna sort of went behind the scenes with the editors of the so-called bibles of psychiatry, the Diagnostic and Statistical Manual of Mental Disorders and the International Classification of Diseases, and said, like, “Hey, the criteria for autism are too narrow and restrictive. It’s a spectrum. It’s not just this monolithic syndrome where all the people are basically the same. In fact, people with autism are really different from one another.” Her changes to the DSM and the International Classification of Diseases went to print in the late 80s and early 1990s. Almost immediately, the number of diagnoses started to soar, just as Lorna not only intended but indeed hoped would happen, because she knew how hard it was to either be autistic and have the wrong diagnosis, or to raise an autistic kid without help, without special education. It was exactly what she wanted to happen, but then this bogus guy named Andrew Wakefield came along and blamed the rise in diagnoses on vaccines.
Brett McKay: Yeah. That’s where that came from. They found out, they later proved that his studies were bogus somehow, right?
Steve Silberman: Oh yeah. Absolutely. No, they haven’t been replicated. You know, the problem is … All right. Here’s the thing. When I started researching NeuroTribes, I thought, “Well, maybe Andrew Wakefield is a true believer.” You know, he was on to something. He ran a study. The study was no good. There were a lot of ethical problems with it, like in his press conferences he would really sound the alarm about vaccines. Vaccine uptake rates started falling all over the world. Diseases like measles and mumps started coming back strong after being kept down for years by vaccination programs. I thought, “Maybe he thought he was onto something, and he had good intentions.” No. The more research I did, the more I realized that he was just a liar who lies about autism history. He insists that autism never existed before Leo Kanner wrote about it. Well, one of the people who would have disagreed with him was Leo Kanner.
Leo Kanner didn’t think he was discovering something new under the sun. He just thought it had never been adequately described in the clinical literature, and in fact, one of the founding fathers of British psychiatry, this guy J. Langdon Down, who named Down Syndrome, wrote about kids who would lose speech suddenly and dramatically and disturbingly in their early childhood. Andrew Wakefield said, “Losing speech is caused by vaccines. That’s a new form of autism that has never been seen before, called regressive autism.” Of course, parents would believe such a thing, because it’s actually not that uncommon for a kid to seem to be developing normally for a couple of years and then suddenly they seem to lose skills. Well, J. Langdon Down had noticed that more than 100 years before, but Andrew Wakefield insisted that regressive autism didn’t exist before the MMR. He’s a liar, but unfortunately a lot of parents still believe him because he told a very simple, very emotionally resonant story about what caused the dramatic increase in autism and no one else had ever provided parents with a true version of history, and so that’s why I wrote my book to try to show what actually happened.
Brett McKay: This brings us to this idea of neurodiversity. I mean, autism exists. It’s probably inborn. You showed in your article The Geek Syndrome that parents who are computer programmers, engineers, often have children with autism. Not all of them, but many do. Do geneticists, do they understand why autism exists? I think this goes to your neurodiversity idea, because I remember reading a book about depression, and they think that, well, the reason why depression exists, there is sort of an adaptive quality to it. It provides these … It allows you to have depressive realism. There’s sort of some benefits to it as well, or otherwise it wouldn’t exist. Is there any theories like that about autism as well?
Steve Silberman: Yeah, sure. Absolutely. I mean, think about it. It’s like we know in a rainforest that there are many different kinds of trees, right? And that actually the diversity in a biological community like a rainforest in fact adds to the resilience of that community in the face of changing climate, for instance. Why do we think that there’s only one type of quote-unquote “normal” human brain? You know, if you think about it, just in very basic terms, it’s kind of a naïve idea. It came from sort of the ascendance of psychiatry in the 20th century, where there’s this normal kind of brain, and this guy, a psychiatrist, is going to help you get there if you’re not quite there.
Brett McKay: “Well-adjusted.”
Steve Silberman: What’s that?
Brett McKay: You want to be well-adjusted. That’s what they were trying to …
Steve Silberman: Right. You want to be well-adjusted. Eventually, they came along with psycho-pharmaceuticals. You know, if you have a serotonin uptake problem in your brain, which by the way has never been proven scientifically, you’ll take antidepressants. The truth is, antidepressants do work for a lot of people, but we still don’t know why, you know? The notion that if you have depression or if you have anxiety there’s something wrong with your brain, because there’s really only one kind of well-adjusted human brain, it’s a very naïve idea.
Autism is another sort of avenue towards that understanding. The word neurodiversity came from a sociology student named Judy Singer, in Australia, who was part of one of the very first online communities for autistic adults in the 1990s. The internet came along right when the diagnoses started going up, and one of the things that Lorna did by changing the criteria was that she made the diagnosis available to adults for the first time. I went back and looked at some of the very first online conversations had by autistic people, and one of the questions that kept coming up is, “Can Kanner’s syndrome,” which was considered a form of childhood psychosis, “can it persist into adulthood? Because I was diagnosed with Kanner’s syndrome when I was young, and now I’m an adult, and I still think I’m kind of weird somehow.”
The people who were in these early online communities literally had to figure out that they were autistic adults, because the mainstream textbooks didn’t support that idea. Anyway, Judy was learning about something called the social model of disability. There are a couple of different ways of looking at disability. One is that, “You’re disabled. There’s something wrong with you. It should be fixed.” The other way to look at disability is to say, “Well, maybe if you say you’re really disabled, maybe there are things that society could do to help you lead a satisfying life.” It’s like, if you’re in a wheelchair, and there are no wheelchair ramps or no accessible classrooms, or there’s just stairs, you’re really disabled. But if you live in a town with good disability access and accessible movie theaters, and accessible public transit, you can get around.
Judy started to think about autism in a disability context, and particularly in the context of the social model of disability. Autism had been defined as just sort of a checklist of deficits and impairments for decades. “You can’t do this. You can’t do that. You’re not good at this. You’re not good at that.” Well, it turns out that a lot of autistic people are good at something. They’re not all geniuses. They can’t all count “Two, six, fall under the floor,” like Rain Man. They’re not all savants, but a lot of autistic people are good at something. Particularly in their area of special interest.
Judy started asking herself, “Why do we only talk about ourselves in terms of deficits and impairments?” She came up with this word neurodiversity, based on the word biodiversity, which we all know is a good thing, so that autistic people and people with other conditions like ADHD and dyslexia could talk about themselves without sort of automatically putting themselves down in a medical way. She hoped that the word neurodiversity would spread through the online community in the same way that slogans like “black is beautiful” or “gay is good” had spread through other marginalized and stigmatized communities in the 60s. She hoped that the word neurodiversity would do the same thing for people with autism and these other forms of cognitive disability, and it worked. It went viral.
Brett McKay: With that in mind, I’m sure there’s people who are listening to this, they’re parents. Maybe they found out their child has autism, or is on the autism spectrum. For many parents, finding that out can be devastating, because it doesn’t fit the plan, right, that they have for their kids. I mean, any advice for parents out there who are listening, you know, just found out their child is on the spectrum? What’s the mindset they should approach? With what you just said, this history of autism you’ve just given us, what is the best mindset to go about in raising a child on the spectrum?
Steve Silberman: Sure. That’s a very important question. The first thing I would say is, many of the messages that parents get when their kid is diagnosed, even sometimes from their friends, they’re very dire. Like, they tend to go, “Your kid will never get married. Your kid will never be able to go to college.” It’s as if people are trying to prevent them from having unreasonable hopes. The truth of the matter is, you have no idea what your kid might be capable of when they grow up, and really the arc of autistic people’s lives, particularly in the last 20 years or so, has shown that autistic people are capable of astonishing spurts of development even in middle age. You have no idea what your kid will be capable of, and I’ll give you an example from today’s news.
There was a kid named … I think Jody. Unfortunately I don’t have his name on the tip of my tongue. He was basically non-verbal when he was a kid. He was growing up in England. Many bad predictions were made about him, but he had a curious interest in birds. He loved to watch birds through the window, and it turns out that one of the reasons why he loved to watch birds was because they could quickly fly away and escape unpleasant surroundings, which is what he wished he could do.
Well, instead of saying, “Well, will you stop staring out the window at birds all the time?” They got him a bird, you know? The kid named the bird, and it was like one of the first things that he said. The kid got really into birds, and by studying the science of birds, he ended up becoming interested in science in general. Anyway, that kid is about to go to Oxford as a Rhodes scholar. He was basically non-verbal when he was young, and by supporting the kid’s special interests … Like another of the bad theories that Leo Kanner had was that autistic special interests were inherently pathological. One of Kanner’s patients was a kid who could identify 18 symphonies after hearing only a few bars, before he turned two. Like he would hear a few bars and say, “Beethoven.” Kanner thought that was very bad, because kids couldn’t possibly be interested in Beethoven. They’re obviously just trying to earn love from their unloving parents. That’s wrong. The kid was really into Beethoven, and other classical composers.
Autistic special interests, as they’re often called, are actually the basis for a future pathway into a successful life. That’s something that Asperger knew, like that kid drawing the geometric figures in the sand who went on to become an assistant professor of astronomy. Autistic minds learn, but in their own way. For many decades it was assumed that autistic kids were incapable of learning. Well, that’s because they were in institutions, where there was no education going on.
What I would say to parents is, obviously not every autistic kid is going to turn out to be some kind of a genius, and the kid will definitely need many, many different forms of support that will change over time. If you’re a parent, you need to become a very powerful advocate with your kid’s school boards and with practically everything in order to ensure that your kid leads a successful life. I would also send parents of a newly diagnosed kid to see a relatively recent film called Life Animated, which is a story of how a … It’s a real life story of how a journalist named Ron Suskind had a kid who lost speech suddenly. They thought his life was basically over, more or less. They thought he would have to live in an institution. They used the kid’s interest in Disney movies to establish communication with him again, and that kid is now living on his own in his own apartment, and he’s a very charming young man.
What I would say to parents is, don’t despair. Try to find good sources of information. My book can give you the history, but for a parent, I would suggest another book called Barry Prizant’s Uniquely Human. There’s also a book called The Real Experts, which is an anthology of writing by autistic adults, reflecting on what experiences helped them get through life. It’s really important that autistic kids get role models of autism in adulthood. They’ll see that it’s not a hopeless situation, which is the message that unfortunately many parents get when their kid is first diagnosed. Don’t lose hope.
Brett McKay: I love that. What about for those of us that might not have autistic family members, but work or interact with individuals who are autistic? I mean, you’re a non-autistic person who’s I’m sure talked to thousands of autistic people. I mean, I think a lot of people want to befriend and help these people feel comfortable, but they’re not sure about what’s the best approach. Any advice there?
Steve Silberman: Yeah. Let them lead, you know, in a sense. I remember I had a very important lesson, actually, because an autistic guy who was really hilarious online sort of got in touch with me, wanted to have coffee. I went to meet him for coffee. The whole time he was sitting there, I thought he was having the worst time. He was like, frowning at me. He seemed very tense. I thought, “Oh god. This is terrible. This isn’t working at all. I’m not coming off as charming.” You know? Then I thought it was not a good interaction, then I got home and he was like, “That was great. When can we do this again?”
It turns out that non-autistic people have as much trouble parsing the body language and facial expressions and social signals of autistic people as much as they have trouble parsing ours. Don’t assume that an autistic person will respond in non-autistic or neurotypical ways to your little jokes or whatever. They may not get them. They may have a very highly developed sense of humor and sarcasm, but they may miss an ironic comment that you make or whatever. Just sort of let the autistic person establish what level of communication they’re comfortable with, what methods of communication they’re comfortable with. If an autistic person looks away from you, it doesn’t mean that they’re bored or not listening or hostile. It could mean that they’re having trouble processing your facial expressions at the same time that they’re listening to your words, so let them look away. They may be even more interested than you can possibly imagine in what you’re saying.
I would say, you know, sort of let the autistic person lead rather than enforcing some kind of standard of normal behavior which is based on non-autistic behavior. There are organizations you can go … You know, if you’re curious, particularly for parents, there are organizations you can get in touch with, like there’s a group called AANE, the Autism and Asperger’s Association of New England. They have meetings for both autistic people and parents. You can meet autistic people, get to know them, and thus get to know not only your own child better, but what your child’s potential is.
Brett McKay: Awesome, Steve. We covered a lot.
Steve Silberman: We did.
Brett McKay: This is great.
Steve Silberman: Thank you.
Brett McKay: Well, Steve Silberman, thank you so much for your time. It’s been an absolute pleasure.
Steve Silberman: Thank you. It’s a thrill for me to be here.
Brett McKay: My guest today was Steve Silberman. He’s the author of the book NeuroTribes: The Legacy of Autism and the Future of Neurodiversity. It’s available on Amazon.com and bookstores everywhere. Also check out our show notes at AoM.is/NeuroTribes, where you can find links to resources where you can delve deeper into this topic.
Well that wraps up another edition of The Art of Manliness Podcast. For more manly tips and advice, make sure to check out the Art of Manliness website at ArtofManliness.com. Our show is edited by Creative Audio Lab here in Tulsa, Oklahoma. If you have any audio editing needs or audio production needs, check them out at CreativeAudioLab.com. We appreciate your support. Reviews on iTunes and Stitcher helps out a lot. As always, until next time, this is Brett McKay telling you to stay manly.
Last updated: November 16, 2017