Most people think of autism as a disease, a major impediment of which an increasing number of children are "victims." But over the past two decades, a growing number of adults on the autism spectrum, myself included, have rejected this frame and called for non-autistic "neurotypicals" to respect and accommodate "neurodiversity." We believe that autism is a natural and in many ways desirable variation in how people think, not a great evil to be stamped out.
To neurotypical people, this may seem like a shocking reversal. But as science journalist Steve Silberman writes in his new book NeuroTribes: The Legacy of Autism and the Future of Neurodiversity, the man who discovered autism, Austrian psychiatrist Hans Asperger, conceived of it similarly, as a way of thinking that brings blessings as well as hardships. But then psychiatrist Leo Kanner claimed credit for Asperger's discovery and introduced a much harsher view of autism, paving the way for decades of brutal and abusive treatment.
Silberman and I spoke about the book, the history of autism, and the growth of the autism rights movement on Friday. An edited transcript follows.
People have a image of autistic people as these completely nonverbal children banging their heads against the wall. How did that stereotype emerge? Why is the public image of us so far off?
What society thought of as the natural course of autism was actually a very skewed view of what happened to autistic people when they were put in institutions. For decades, the recommended course of treatment for autism was institutionalization.
Parents were routinely told they should put their child in an institution, quietly remove their photographs from the family albums, never speak of them again, and enlist in decades-long courses of psychoanalysis to think about why they were motivated to wound the developing psyches of their children.
When children were put in institutions for the rest of their lives, it wasn't like they were put in specialized autism wards. There was no such thing, with very few exceptions. They were mostly put on psych wards for adult psychotics. Oliver Sacks worked on such a ward, Ward 23 at Bronx psychiatric, in the 1960s. He told me that some of the children and young adults would be put in straight jackets and isolation rooms to sit in their own waste for weeks on end. The children and young adults became self-injurious, which is not a surprise at all. If you treat people brutally, they'll react in extreme fashion.
Then Ivar Lovaas came along at UCLA. He was giving the kids electric shocks to suppress stimming [repetitive movements used by autistic people to reduce stress]. At one point Lovaas and Bernard Rimland recommended mothers buy cattle prods to use on their children at home to suppress relatively harmless autistic behaviors, like echolalia, which turns out to be a distinctively autistic way of learning language, not some problem that needs to be extinguished.
The reason they were willing to do that is because they earnestly felt that if the children were left alone they were end up chewing through their own fingers, as children in institutions did. The notion that autism was a fate worse than death was inextricably intertwined with institutionalization.
It's really only in the 1980s that people like Temple Grandin and the guys who were the real models for Rain Man, like Peter Guthrie and Mark Rimland, who had not been institutionalized came on the scene, that people saw that the natural course of autism did not have to be so hopeless.
The idea of autism as a "fate worse than death" is especially interesting given that autism was discovered by Hans Asperger while he was working in Nazi-controlled Austria, where the murder of disabled people was official policy. How was he able to conduct that research in such a hostile political context?
What was going on in the background was the Nazi annexing of Austria in 1938 and the beginning of the Holocaust. Action T4, which was the secret extermination program of disabled people, was used as a practice run for the Holocaust. Asperger was surrounded by Gestapo dragging away disabled children and leaving them outside the hospitals to die of pneumonia.
Asperger himself must have been walking to work in the morning past Jewish storefronts that were on fire. His university, the University of Vienna, had been one of the intellectual leading lights of Europe primarily because of the Jewish faculty. The Jewish faculty were purged — many were taken to concentration camps, others killed themselves — and they were replaced by these bumbling Nazi fanatics. It became this farce of a university.
Asperger was in a very complicated position. He must have signed a loyalty oath to Hitler, because all the faculty were required to do so, yet he was a member of a Christian young group known as the Wandering Scholars, which was very anti-Nazi and had been banned. He himself was certainly not a Nazi, but everyone around him was a Nazi, including his supervisor Franz Hamburger, who saved him from the Gestapo when they came three times to his clinic to arrest him and take his children away to the camps.
In 1938, Asperger gives the first public talk on autism in history and presents this amazingly prescient view, that the gifts of the children in his clinic were inextricable from the challenges that they had. Today we would call that view neurodiversity, but he was literally trying to save the lives of the kids in his clinic from the Nazis.
Asperger saw more than 200 children at all levels of ability, from nonverbal kids who would never be able to live without constant care to chatty kids who became professors of astronomy. He at one point suggested to the Nazis that these kids could make great codebreakers for the Reich. They apparently ignored that advice and set about to exterminate the children, but if you think about it, the Allies sort of employed that advice with Alan Turing at Bletchley Park.
That gets us to Leo Kanner, who took a much harsher view of autism. He got credit for discovering autism, despite Asperger's work coming first. Was he aware of Asperger's research?
It has long been believed that the virtually simultaneous discovery of autism by Leo Kanner in Baltimore and Hans Asperger in Vienna was one of the great synchronicities of 20th-century medicine, but I discovered that that was not true at all.
What happened was that Asperger discovered what we would now call the autism spectrum in the 1930s in Vienna, with the help of his chief diagnostician George Frankl, who was apparently adept at choosing which path in education kids should take so that they might flourish to the best of their potential. Like most Jews, Frankl faced a choice, where he could stay and die or he could leave. In 1938, George Frankl left Vienna with the help of an American clinician at Johns Hopkins Hospital named Leo Kanner.
Kanner was engaged in a truly heroic project, to rescue as many Jewish clinicians from the Nazis and the concentration camps as he could. He and his wife found jobs for all these great Jewish clinicians in America.
In 1938 Kanner saw his first autistic patient, Donald Triplett, or "Donald T." But he didn't know what to do with Donald T, so he sent him to Frankl at the Child Study Home. At that point, Frankl had been seeing autistic children for a decade and knew exactly what was going on with Donald.
Frankl diagnosed Kanner's first three autistic patients. The mysterious synchronicity is not so mysterious; after all, Kanner actually had two of Asperger's core team with him when he "discovered autism."
The problem is that Kanner framed autism very differently than Asperger had. Instead of seeing it as a continuum, Kanner saw it as monolithic condition. Instead of seeing it as a lifelong condition, as Asperger and Frankl did, Kanner framed it as a form of "infantile psychosis" and came to say it was caused by bad parenting.
Kanner's view prevailed unchallenged for decades because he never mentioned Asperger's work in his own voluminous writings on autism. Kanner only mentioned Asperger's name once in his entire career in a very dismissive book review in the 1970s.
By burying Asperger — and Frankl too — he buried the spectrum until it was rediscovered by Lorna Wing in London in the late 1970s, early 1980s.
How did Lorna Wing rediscover Asperger's work and the idea of the autism spectrum?
In the UK at the time, kids with autism or any number of other learning disabilities were generally sent to "training centers for the severely subnormal" where they learned such skills as basket weaving.
Lorna — along with Judith Gould, her research assistant — went to those and whatever other facilities there were: hospitals, clinics, schools, etc. She wasn't looking for kids with what she'd later term "Asperger's syndrome." She was looking for kids with IQs under 70, since those kids would face the most serious challenges and their families would be most in need of help from the National Health Service.
Kanner thought autism was a upper-middle-class disorder because he primarily saw upper-middle-class people. But who was showing up at his office? It was mostly children of psychiatrists, other academics.
In a sense, Kanner was doing a top-down method of looking for data. Lorna did a bottom-up approach by going out into the community. She noticed there were lots of other children in Camberwell, outside London, who showed just a couple of features of Kanner's syndrome but who still needed help. She saw a plethora of kids who had a wide variety of manifestations of autism.
Lorna didn't know what to make of this until she saw a reference in an article by a Dutch psychiatrist to Asperger's paper. It had never been translated from the original German, so she asked her husband John to translate the paper. A light went on over her head: "This is what I'm seeing. What this guy saw in Vienna in the 1930s and '40s is exactly what I'm seeing in Camberwell."
From that, she and Gould developed what they initially called the "autistic continuum." She eventually got tired of the word "continuum" because it sounded too dry and nerdy, and chose the word "spectrum," thinking of a line by Winston Churchill. He said, "Nature never draws a line but smudges it," by which he meant that nothing in nature is binary or crisp. Everything blurs into each other.
By the late 1980s, autistic adults were starting to organize, and the neurodiversity movement began to take shape. Why did that happen at that particular moment in time?
One of the things that happened was Temple Grandin. She started going to autism parents' conferences. Until they met her, many of the parents had never seen an autistic adult, because most autistic adults were in institutions.
Temple started giving talks at parents' conferences, simply reporting what it was like to be inside her mind when she was growing up. To parents, it was an unbelievable revelation. It was like speaking to their children even if they could not speak.
Temple described things that are now widely known, like sensory sensitivity and what it's like to have a meltdown. Parents had never been able to reach children in this way or have their children explain what it felt like to be them. Suddenly they had this autistic person who could report what it was like to have an autistic mind.
However, at one of these conferences there was a young autistic guy named Jim Sinclair. A year later, he appeared on a panel where he was reporting what it was like to be autistic to a room full of parents peppering him with questions. He told me that he suddenly felt like "a self-narrating zoo exhibit." He didn't want to be this bug wriggling under glass for these people who had filters in their own minds that pathologized everything he said. He really just wanted to meet other autistic adults and find out what they shared in common.
Autistic adults started showing up to parent conferences and crashing them. As the clinicians and the parents would drone on and on about autism, suddenly autistic people would come up to the microphone and say, "Well actually, it's like this." They became a roving band of proud autistics who would go to conferences, and eventually they didn't want to go to parents' conferences where they would have to hide in the coat closet if they got overwhelmed by people being neurotypical really loudly. They no longer wanted to be in a neurotypical environment.
So they split off and created Autreat, which was an environment designed by autistic people for autistic people. Among the people whose minds would've been boggled by the notion of an autistic community was Leo Kanner. Can you imagine? He never would've thought there could've been such a thing.
At the same time that the early Autism Network International was starting to plan stuff like Autreat, they were forming online communities, and they originally functioned as allies of the parents' community. Like, "We're here, we will answer your questions," like they had done at parents' conferences.
But eventually they got really bummed out, as parents would either pump them for information or say things like, "Could you guys stop perseverating about that thing you did at the last conference?" Because it was so easy to create a new space in the emergent online world, they created autistic communities online that were primarily for autistic people.
In the early days of online autistics participating in conversations, one of the most frequently asked questions among psychiatrists was, "Can Kanner's syndrome persist into adulthood?" Think about that. It's really heavy. It's super profound. They were thinking, "Wait a minute, we're still autistic. We were diagnosed as kids, but we still are." Even Temple had to recognize that. Something everyone forgets is that when Temple's book Emergence was first published, it was billed as the first book by a "recovered autistic person." It was really only after a couple of years of speaking at conferences that Temple was like, "Hey, I'm not recovered. I'm still autistic."
From these online communities, synergizing with the planning of events in meatspace, this very vibrant community arose.
What's so interesting is that eventually a bridge was built between the autistic community and the larger disability rights community. Before that, autism was never considered in a disability rights context. When you had young adults who had been diagnosed in the '90s, they started to read about other disability rights groups and the fate of other disabled people. It was like, "Hey, wait a minute, this person is talking about my life, actually."
When people say "neurodiversity is just about high functioning people" — no it isn't. It's about disability rights. It's the bridge between the world of autism and the world of cross-disability activism. Disability activism is not about leaving the people in wheelchairs behind and only putting the pretty people on camera. Disability means everyone comes along, including the people who are "low-functioning."