What You Need To Know About The Hidden History Of Autism

Whether we're talking about vaccines or GMOs, there seems to be no end to the bad information out there about autism. Which is why Steve Silberman, author of NeuroTribes: The Legacy of Autism and the Future of Neurodiversity (officially out tomorrow), wanted to get to the truth about autism, its murky past, and how we should be talking about it. "I’m hoping that my book opens a social dialogue beyond what causes autism and how we can cure it," says Silberman. "We’ve been obsessed with that for 25 years, and it’s time to start helping autistic people who are already here — and their families — live happier, healthier, and more secure lives." So, in that spirit, we talked to Silberman about what he found while researching the book — and the discussions our society really needs to be having about autism. Why are autism rates rising?
"What’s definitely happening is that, since the 1990s, estimates of the prevalence of autism have been soaring. That triggered a lot of fears among parents that some hidden factor in the toxic, modern world was responsible for these rising rates — like vaccines (even though that hypothesis has been thoroughly studied and discredited), GMOs, WiFi, or air pollution. "In the early 1990s, when the diagnostic criteria for autism were radically broadened and made more inclusive, the experts never communicated to the lay public because they were so used to laboring away on [what was, until then] an obscure condition. Nobody really explained to parents that these criteria were being radically changed.

"[I went] back into history, to the very roots of autism research, to figure out why the criteria had to be changed. This is what I discovered: The guy who took credit for discovering autism in 1943, Leo Kanner, speculated that autism was very rare based on the patients he saw. However, he was not truly the guy who discovered autism — that was Hans Asperger. In Vienna, [Asperger] had a clinic where kids would live for weeks. And what Asperger discovered in the late 1930s is what we would now call the autism spectrum. He discovered that autism had a very broad, diverse, and colorful range of manifestations. Some kids were non-verbal and institutionalized. But others were very chatty, and those he called his 'little professors.' "He also saw autistic adults, and he recognized that the kids in his clinic grew up to be adults who still faced many of the same challenges that the kids did. So he recognized that autism was a lifelong condition that required support from the community, teachers, and parents. Kanner saw autism in a much narrower view; he saw it as an exceptionally rare form of childhood psychosis...He wildly underestimated how common autism is. Asperger knew that autistic people had been around forever and very much respected the fact that, with their intense focus and out-of-the-box thinking, they had been contributing to the evolution of science and culture for a very long time. "The concept of the autism spectrum was invented by a cognitive psychologist in England named Lorna Wing. At first, she trusted Kanner's very narrow model of what autism was, but then she did one of the first basic studies of autism’s prevalence in the general population in a suburb of London. When she went out to all the clinics, hospitals, and the few special education facilities...she saw that Kanner's model didn’t work. There were all these kids that showed some, but not all, of the specified behaviors Kanner identified. And they, too, needed support, and their families needed support, and she knew this because her own daughter, Susie, was autistic...so she knew intimately what the challenges of raising an autistic child were.

"She suggested expanding the concept of autism into a spectrum, and her model for that was a paper written by Hans Asperger... So, in order to create the autism spectrum, Lorna Wing resurrected Asperger's paper and [in 1981] created an additional diagnosis of Asperger’s syndrome." Women have a lower rate of autism than men. Does that have to do with diagnostic criteria?
"It's an issue of great controversy in the field of autism research. Asperger didn’t describe any autistic women, though he did apologize for that and said [it] may be because we don't know what to look for...because their descriptions were so skewed toward men...autistic women were virtually invisible to medicine for most of the 20th century. "Autism presents differently in women — women are trained to fade into the background in social situations, imitate other people, and sort of script their remarks to fit in. Whereas if guys are aggressive or stand out...they are encouraged to do so. It could be that some of the differences we see are the interaction between autism and culture. But we don’t know, because there’s been so little research done on autistic girls and women. Even 70 years into autism research, that's still a very new field." What does "neurodiversity" mean?
"The diagnosis first became available to adults in the 1980s. And many, many, many adults were diagnosed by the late '90s. And not only that — adults started diagnosing themselves by reading about Asperger's on the internet. So they were identifying with autism as a cultural identity; they saw reflections of their own lives in stories other people were telling in communities for autistic people on the internet. And out of one of those communities, a woman in Australia whose mother was autistic, a sociologist named Judy Singer, coined the term 'neurodiversity.' "All the words used to describe autism up until that point were medical, pathologized, or stigmatized. So autism was just a checklist of deficits and dysfunctions, even though autistic people are better at certain things than so-called 'neurotypical' people. 'Neurotypical' was also invented by autistic communities...and it snatched the cultural leverage away from neurotypicals and gave it to the autistic. So, instead of being seen as passive patients in the stigmatizing medical machine, they took agency and control over their own lives and perspectives and defined their lives in terms that made sense to them.

"What Judy Singer noticed is that there are all these different styles of thinking and learning, different textures of cognition. Maybe it’s like biodiversity in a forest. Maybe it’s a good thing, instead of a list of diseases or...disabilities. Maybe this cognitive diversity is actually a hidden strength in our culture... It could be that — as we face some really serious challenges in the coming years, like climate change — we will need different types of minds working together to solve these enormous-scale, global problems." Where does a controversial organization like Autism Speaks come into this?
"Autism Speaks was created in 2005 by Bob Wright, the former chairman of NBC Universal and GE, and his wife, Suzanne. They have a grandson named Christian [who has autism]. Autism Speaks was founded at the height of anti-vaccine hysteria. What Bob and Suzanne Wright often say is that their grandson’s life was 'stolen away from him' as if he was kidnapped, not living the life he was 'supposed to lead.' "Many of the people who work for Autism Speaks have excellent intentions and are trying their best to make a contribution to the lives of autistic people. [But] very little of the money that Autism Speaks funds for research actually goes to making the lives of autistic people better. Almost all of the money that Autism Speaks invests in research goes towards things like very expensive genomic studies or looking for environmental triggers for autism. In other words, most of the research is designed to prevent more autistic people from being born rather than improving the lives of the autistic people and their families who are already here. "Contrast that approach to the approach of the National Autistic Society (NAS) in England, founded by Lorna Wing, inventor of the autism spectrum. She didn't think that autism was some sort of plague that appeared out of nowhere because of some mysterious factor in the toxic, modern world. She knew that autistic kids were going to grow up to be autistic adults, and that society better start planning for their future. The NAS devotes two-thirds of funding to services that benefit autistic adults."

How do the media's representations shape our ideas of autism?
"The first exposure I had — and I think many people had — to autism was Rain Man. It’s become sort of fashionable to diss Rain Man as a stereotypical representation of autism. But what people don't realize is that it was the very first representation of an autistic adult that almost anyone (who didn't have a personal connection to autism) had ever seen. "There are certain things that are unfortunate about Dustin Hoffman's’ representation — for one, by the end of the movie, he has to go back and live in an institution, unlike the real-life models for his character. But Rain Man was a bigger breakthrough than most people now think. It immediately created a worldwide phenomenon of interest in autism. The number of newspaper stories on autism went up, like, 500%. One mother told me that, before Rain Man, she would always have to explain to people who met her and her son, 'No, no, I didn't say artistic, my son is autistic.' But, a week after Rain Man, everyone knew that word. "Rain Man contributed to the societal recognition of autism like nothing else had ever done. So, in that sense, it was very progressive. Now, Hollywood is practically obsessed with characters who are autistic; they're on shows like Community and Big Bang. They have become familiar figures in the cultural landscape. And that's appropriate...but there are some kinds of autistic people who are still really underrepresented [in the media], like women or people of color."