By Zoey Giesberg
Autism may be one of the most misunderstood disorders in the world. As a developmental disorder affecting social and life skills development, it has been long been subject to misinformation as to why it occurs, how it affects people, and especially why diagnoses are on the rise. Even though diagnostic criteria for autism has changed two times in the last twenty years, panic has set in since the Center for Disease Control and Prevention (CDC) reported that 1 in 68 people are diagnosed with autism as of 2014 (opposed to 1 in 150 in 2000). Everything from vaccines to genetics has been scrutinized to try to explain why autism occurs and has prompted a push to find a way to “prevent” or “cure” the disorder. And this quest to “fix” or “cure” autism has pushed autistic people to face a world at best not accessible to them and at worst outright hostile.
Science reporter Steve Silberman argues that there might not be anything to panic over. Expanding on his 2001 Wired article “The Geek Syndrome”, his new book NeuroTribes: The Legacy of Autism and the Future of Neurodiversity explores the history of autism—from simultaneous “discoveries” in Austria and Maryland, to “refrigerator mothers,” to the modern autism advocacy movement. And through all of this, Silberman shows how autism has been plagued by narrow interpretations and how the modern era is changing them. The New York Times Bestselling book is being touted as changing how we see autism from a “disease” to a different way of life. PopFront’s Zoey Giesberg interviewed Silberman to discuss his book in detail.
PopFront: Can you explain what neurotribes are?
Silberman: I invented that word based on an idea by Irwin Lazar, the founder of the Children’s Hospital in Vienna where Hans Asperger worked. Lazar tended to think of humanity as “clans” or “tribes,” based on inborn skills and aptitudes that each person had. So instead of seeing the children in his clinic as patients, Lazar saw them as future engineers or future farmers or future bakers. What he saw the job of the people working in the clinic as determining each “tribe” each child was in, and helping them express their maximum potential by developing methods of teaching them that would suit their particular learning style. Hans Asperger developed this idea and ended up discovering the autism spectrum because he was prepared to look for natural groups of people within the population of children at the clinic.
PopFront: What inspired you to write the book?
Silberman: In the introduction I explain how I was on a boat with about 100 computer programmers in 2000, a so-called “geek cruise” for Perl programmers. The star of the cruise was the inventor of Perl, Larry Wall, a well-known programmer. After the cruise, I asked Larry if I could interview him at home and he said “Sure. I should tell you I have an autistic daughter.” At that point, I didn’t know anything about autism beyond the movie Rain Man. When I went to his house his daughter was not there, but I noticed he had customized his living environment. For instance, he had changed the buzzer of his dryer to a light bulb.
A few months later, I was writing about another successful Silicon Valley family and learned they also had an autistic daughter. I was later sitting in a cafe in San Francisco telling my friend about this odd coincidence and at the next table a woman suddenly blurted out, “My God! Do you realize what’s going on? I’m a special education teacher in Silicon Valley, and there’s an epidemic of autism in Silicon Valley. Something terrible is happening to our children.” I wrote an article about it for Wired a year later and I got all these emails about it for about ten years, which is unusual in the world of magazine journalism. What I noticed was that many of the parents who were initially obsessed with what was causing their children’s autism and believed there was a cure over the course of years mostly became less interested in the causes and more interested in how their children would age out of services and were completely screwed—there were no transition programs from going from school to the workplace, housing options were very limited to group homes or institutions. It began to occur to me that the entire world was having a heated and rancorous conversation about autism, but it was all about the wrong things. I started to feel like it was no longer okay for journalists to keep saying “the reason for the rising diagnoses is a mystery.” To put it bluntly, I felt like I had blown it in “The Geek Syndrome” by focusing so narrowly in high-tech communities while ignoring the fact that the rates of diagnosis for autism were rising all over the world.
PopFront: What is the focus of NeuroTribes?
Silberman: My book looks at more than 80 years of autism history to show how the decisions made by the famous clinicians who “discovered” autism affected autistic people themselves and their families and how it affected the scope of the diagnosis. I show how in the course of 70 years that what we call autism has become a much broader and more inclusive category, and how it’s a good thing to allow more people to access services while having the downside of triggering a worldwide panic because of a lack of explanation for the expansion by clinicians and journalists.
PopFront: The book starts with a profile of the discoverer of hydrogen Henry Cavendish, implying he had autistic traits. How does this profile relate to the rest of the book?
Silberman: I want to make the point that I didn’t retro-diagnose Cavendish – the guy who made the retro-diagnosis of him was neurologist and writer Oliver Sacks, who was very conservative about who’d he retro-diagnose. I’m not a diagnostician. But the reason why I began with Henry Cavendish was because I wanted to present a life of an autistic person without all the clinical clichés and overlays of pathologized stereotyping when clinicians write about autism. I thought that writing about someone who existed before all those clichés developed could make people see with fresh eyes.
Silberman: Hans Asperger saw autism as a very broad spectrum that lasted from birth to death that included a wide variety of people—from children who would never speak nor live independently to chatty adults who became astronomy professors. Leo Kanner framed autism as a childhood psychosis and adopted the position that bad parenting triggered autism. Where Asperger had seen certain kinds of genius in some of his patients that he called “autistic intelligence,” Kanner tended to portray those same traits as expressive of family pathology. Asperger saw autism as common and its positive traits as socially valuable where Kanner saw it as very rare and a shadow of family pathology.
PopFront: Kanner’s theories ended up prevailing over Asperger’s over the years. Why do you think that is?
Silberman: Asperger was working in Vienna during the era when Nazis marched into the country and took over the hospital where he worked. Essentially, Asperger was working for the Nazis after 1938. I believe he tried to protect the lives of the children in his clinic from a secret extermination program in which over 200,000 disabled people were exterminated to enforce what the Nazis called “racial hygiene”. Asperger was essentially arguing that these children could be of use to society rather than burdens in order to save them. Kanner was working in America at Johns Hopkins University and “discovered” autism with the help of Asperger’s former diagnostician George Frankel (whom Kanner rescued as a fellow Jew) in 1943, and never gave Asperger credit. He never admitted to reading Asperger’s paper until the 1970s. The only time Kanner ever mentioned Asperger was in a dismissive book review, where he said that what Asperger saw was a “42nd cousin of my syndrome” and was “under investigation”. Asperger’s 1944 paper hadn’t even been translated from German at that point and Kanner perhaps didn’t want to give Asperger credit because he was associated with Nazis.
PopFront: A big theme of NeuroTribes is the expertise autistic people have that Asperger saw and how Kanner and his colleagues deemed them problematic. Why did each of them take their relative stances?
Silberman: Kanner believed, especially when he faced pressure from his psychoanalytic colleagues, that parenting played a crucial role in the onset of autism. He thought the parents of his patients were overbearing Jewish “tiger moms” and cold-hearted careerist fathers, and saw these children making a desperate plea for attention by memorizing symphonies and reading the encyclopedia. Kanner interpreted what Hans Asperger saw as a uniquely “autistic” intelligence as symptoms of pathology.
PopFront: Kanner’s theory of cold parenting of autism is often called the “refrigerator mother” theory. Why was that so pervasive in the 1940s and 1950s?
Silberman: When women were enlisted for work during World War Two, they were encouraged to take over jobs previously performed by men serving on the front lines. Women became empowered and much more independent because of this. I think Kanner was responding to some society-wide male anxieties and backlash at these newly independent women. We went from Rosie the Riveter to tranquilized mothers a là “Leave it to Beaver.”
PopFront: People really reacted negatively to the “refrigerator mother” theory. Do you think current autism research is a response or extension of that?
Silberman: Yes and no. A lot of the research carried out now is genetic, and we know that autism isn’t entirely conferred by genes because you can have identical twins where one is autistic and one is not. But I think the bad thing about the current state of autism research is that it’s an extension of the panic of vaccines spurred by Andrew Wakefield in 1998. So much research now is finding the factors creating this “alarming rise” and it renders previous generations of autistic people invisible in the current world.
PopFront: Interestingly, both Asperger and Kanner primarily saw upper middle-class families. Do you think this contributed to their perceptions of autism as a whole?
Silberman: Absolutely—Kanner actually theorized that autism was a disorder that was particular to upper-middle class families. The entire in-patient population of Johns Hopkins included many people of color, but almost all of Kanner’s autistic patients were white whose parents were psychiatrists, academics or in higher-level professions. These parents were in the “who’s who” or American men of science, and word spread throughout this social network that Kanner found kids with this constellation behaviors that were previously inexplicable and frustrating. The parents would have brought their kids to many specialists before meeting Kanner where the kids would be previously diagnosed as “feeble-minded” or “mentally retarded”—largely considered a lower-class diagnosis associated with immigrants and people of color at the time—and these parents didn’t want their kids to be diagnosed with either of these things. It wasn’t until the 1970s when Michael Rutter and Susan Folstein, a pair of British and American scientists, established the idea that autism was largely genetic and others found autism doesn’t discriminate across racial socioeconomic level across the world.
PopFront: Another theme of NeuroTribes is the pathology of autism and the overwhelming need to “fix” it. Why is this deficit-based model so pervasive?
Silberman: I’d say it’s because autism is so fucking hard for people. Autistic people have to grow up in a world that doesn’t have a lot of accommodations and resources for them. Autism also creates certain difficulties “neurotypicals” [people who aren’t autistic] do not have and do not relate to. It’s hard for people to look at autistic people and see anything but a list of deficits. It’s really only by listening to autistic people describing their own lives for people to see the beauty and the unique gifts of autism. I think if it weren’t for autistic people taking the stage of their own stories and the narration of their own lives, then autism would still be seen as just a series of deficits.
PopFront: You dedicate a chapter to the 1988 film “Rain Man” and argue that it changed the public perception of autism. Do you think this was good or bad?
Silberman: I’d say it was very good but in a way that’s been completely forgotten. I’ve heard younger self-advocates say, “Oh my gosh, Rain Man? What a stereotype – it’s horrible!” But before “Rain Man,” hardly anyone (including people in the autism parent and clinician communities) had never seen an autistic adult. Kanner had framed autism as an infantile form of psychosis and that theory is still insidiously prevalent as the current image of autism is largely of kids gazing out longing through mazes of puzzle pieces. “Rain Man” introduced the concept to a lot of people recognizing their relatives or themselves in the character of Raymond Babbit, even though it was just one guy. And yes, not all autistic people are like him.
PopFront: NeuroTribes ends with the rise of autism advocacy with self-advocates like Jim Sinclair, Judy Singer, Temple Grandin, and Ari Ne’eman. How do you think they are changing the public perception of autism?
Silberman: They’re putting autistic adults in the spotlight and they’re demonstrating when autistic people put the gifts of their atypical lives in the service of changing the world to make it a better place for autistic people, they kick ass. They’re showing that autistic people, including non-verbal autistic people, deserve a place at the table when policy decisions are made that will affect their lives and they don’t need to rely on parent-run organizations to speak for them.
PopFront: What do you think are the obstacles these advocates face right now?
Silberman: I think there are two enormous obstacles: the limited stereotypes of what autistic people are capable of in the world and infighting within the autism and autistic communities. One of the divisions in the autism community is between people who are allegedly “high-functioning” and people who are “low-functioning” (I don’t like those phrases because people who are “high functioning” are often struggling more than is obvious and “low-functioning” people often have more gifts than is obvious to the outside observer), and often times parents play the two groups against each other.
PopFront: In a world where autism is referred to as a “disease” and an “epidemic”, NeuroTribes gives a very positive and hopeful look at autism. How is this perspective important?
Silberman: It’s important because you can’t predict how an autistic person is going to come out. Some autistic people will never be able to live independently and will need constant support for the rest of their lives. However, you cannot predict which autistic people will be able to experience growth spurts even later in life. It’s all about hope—parents and autistic people themselves should never give up hope even if they’re struggling, and should always have faith in a child’s potential even if they’re non-verbal or self-injurious. Everybody on the spectrum has a vast beautiful world inside them—whether or not society gives them the chance to express that is the question.
PopFront: How do you think your book will contribute to the discussion of autism and what do you hope it will accomplish?
Silberman: I hope it will get us past the global argument about vaccines that has sucked all the oxygen out of the autism world for the past twenty years. And I hope it create a paradigm shift away from blame and curing and put the focus on the need for more services and support for autistic people and their families.