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Steve Silberman, author of “NeuroTribes: The Legacy of Autism and the Future of Neurodiversity”- December 2015

“I wanted to try to change the global conversation about autism”

Steve Silberman with Leo Rosa, an adolescent with autism who features in his book “Neurotribes”. Photo by Carlos Chaverria for Autism-Europe.

 

Steve Silberman is an American writer based in San Francisco, where he is best known for his work with Wired magazine, a publication reporting on science and technology. His 2015 publication NeuroTribes, an investigation into autism, autistic people and the history of autism, has become the first popular science book to win the Samuel Johnson prize, praised by judges of the prestigious non-fiction award for “inject[ing] a hopeful note into a conversation that’s normally dominated by despair”.

NeuroTribes goes back to explore the earliest days of autism research. It chronicles the brave and lonely journey of autistic people and their families throughout recent history. Silberman’s work, exploring the way society’s approach towards autism has evolved over the decades and centuries, maps out a path for our society toward a more humane world in which people with disabilities and those who love them have access to the resources they need to live happier, healthier, more secure, and more meaningful lives.

In December 2015 Autism-Europe spoke to Steve Silberman to ask him some questions on his hugely successful publication, and about his thoughts on some of the issues at the heart of Autism-Europe and its members’ work.

Autism-Europe: You explain in the first chapter of NeuroTribes where your particular interest in autism stems from, but why do you feel it is so important to understand the history of autism?

Steve Silberman: I wrote an article in 2001 for Wired called the Geek syndrome, which was one of the first mainstream articles about autism and high-tech communities. For the next 10 years I got emails from people about it: from clinicians, from autistic people themselves. It’s very unusual to get emails about a magazine article 10 years later, usually that happens for about two weeks. These emails were extremely touching and tragic often, because they described autistic people and their families facing problems getting access to diagnostic services, to support services and to employment. I had many autistic people write to me to say that they had been considered very bright when they were young, but that they couldn’t find jobs because they could never make a good impression in an interview. The emails from parents often presented very dire predictions for their children’s futures. As we know, people on the spectrum often develop a lot in unexpected ways over the course of their lifespan.

At the same time the media was having loud, fervent conversations about autism, but it was always about autism and vaccines, and whether vaccines cause autism. And even if it wasn’t about vaccines, the comments sections would be dominated by arguments about vaccines.

Even really reputable publications like the New York Times, when writing about autism, would say that the profound increase in diagnosis and estimates of prevalence that began in the 1990s, was a “mystery”. So I decided that the only way to figure out the answers to this mystery was to go back to even before the official beginning of autism history and try to figure out what was going on.

AE: Did you want to change the insight people could have on the issue and try to steer the debate in another direction?

Steve Silberman: Exactly. It was almost an impossible hope, but I wanted to try to change the global conversation about autism, which, even if it wasn’t always about vaccines, was very focused on potential causes of autism. So if it wasn’t vaccines it was pesticides, if it wasn’t pesticides it was antidepressants in the water supply, if it wasn’t that it was Wifi. There was even a woman in England who said “I pointed video games and I pointed autism”. It was like every week there were new theories about what causes autism, and yet when scientists went back to follow up those theories were shown to be untrue, or at best only true about a very small number of cases. And so I felt that the media, which then influenced the research agenda, particularly in the United States, was so entirely focused on discovering the cause of autism that we were ignoring the problems of autistic people and their families, which were completely dire and tragic. You know, parents would have to quit jobs that they loved to try to access therapies that they couldn’t afford because they weren’t covered by their insurance. Autistic people were living in poverty without access to either a job or healthcare.
Basically autistic people and their families were not benefiting from millions of dollars of research into the potential causes of autism.

AE: And the title NeuroTribes. Where does this come from and what is the concept?

Steve Silberman: I invented the term NeuroTribes because I wanted to come up with a word for not just autistic people, but people with other conditions, that considered people with these conditions primarily as people: people with different traits, different strengths, as well as characteristic challenges. One of the seeds of that word was that the founder of Hans Asperger’s clinic at the University of Vienna was a guy named Irwin Lazar, and his staff said, in a tribute to him, that he saw humanity as being divided into clans. So in other words, the children in Asperger’s clinic each had characteristic learning styles, strengths and challenges. Irwin Lazar saw the job of the people working in what would later become Asperger’s clinic, as determining which “tribe” a child was in, so they could in turn recommended courses of education and even possible employment paths in the future that would take advantage of the strengths of each child.
In the title at least I wanted to take autism out of the medical context and put it into the context of humanity.

AE: We see from the bibliography of NeuroTribes that it constitutes a work of extensive research. Was there anything to come out of your studies that you were not expecting at all?

Steve Silberman: Yes it took my five years to do the research. I didn’t expect to find a living connection between Hans Asperger (the Austrian paediatrician, medical theorist, and medical professor whose work later fed our understanding of autism as a spectrum) and Leo Kanner (the Austrian-American psychiatrist and physician known for first identifying autism in children), because every history of autism has maintained that the two discoveries were made independently. So that really surprised me.
Basically what happened was I was reading an early tribute to Irwin Lazar (founder of the clinic in Vienna where Asperger worked), and I saw the name Georg Frankl. Then I was reading Leo Kanner’s unpublished autobiography and I saw the name Georg Frankl again. I thought “where have I seen that name before?” And I realised it was the name in Leo Kanner’s landmark 1943 paper that was considered the discovery of autism. At first I thought it couldn’t possibly be the same person, but it turned out to be true. I looked at the biographical file of Geogr Frankl, located at the John Hopkins medical library, and I looked down his work history and it said “kinderklinik” Vienna, and I thought “Oh my God it’s the same guy”. Through this link I managed to find a paper Georg Frankl wrote after coming America, on autistic people and their families. It was a very perceptive and compassionate paper. And he talked about the “autistic continuum”, at a time when there was no concept of the autism spectrum (he wrote this in the 1950s at the University of Kansas).

AE: We see many heart-breaking, but also heart-warming tales in your book. Is there one story that stuck with you in particular?

Steve Silberman: Yes, I was very touched by the journey of Craig and Shannon Rosa, the family in the chapter called “The Boy who Loves Green Straws”, because they are very smart people, and when their son Leo was diagnosed with autism they got the usual predictions of disaster both from clinicians and from the media, particularly because Leo was born at the height of the vaccines media hysteria. They were told his future was over. They became convinced that Leo had been made autistic by vaccines, and so initially went through a journey that many parents went through. They initially tried to cure Leo of autism using dietary interventions, it didn’t work. Leo faces many challenges.
Eventually Shannon and Craig decided that this is their son, and they must love and support him as he is. They stopped thinking in terms of cures and vaccines, and started thinking “what can we do to help him live up to his maximum potential, whatever that may be?”
Another related thing that impressed me was that I write about Mark Rimland, whose father Berny Rimland launched the Autism Parenting Movement in the US, and really launched the autism cure movement in the US. He essentially dedicated his life to curing mark, and he never did. Mark is still very autistic, but he is very happy because he has a community that supports him and accepts him for who he is. I interviewed Mark’s mother Gloria and when I asked her if there was one thing she wished she had known when Mark was very young and his behaviour was difficult, she said “yes, how well he would turn out”. By that she did not mean he is not autistic, because he’s still very autistic, but he’s a beautiful person. I found that very moving.

Another related thing that impressed me was that I write about Mark Rimland, whose father Berny Rimland launched the Autism Parenting Movement in the US, and really launched the autism cure movement in the US. He essentially dedicated his life to curing mark, and he never did. Mark is still very autistic, but he is very happy because he has a community that supports him and accepts him for who he is. I interviewed Mark’s mother Gloria and when I asked her if there was one thing she wished she had known when Mark was very young and his behaviour was difficult, she said “yes, how well he would turn out”. By that she did not mean he is not autistic, because he’s still very autistic, but he’s a beautiful person. I found that very moving.

AE: How significant do you think the autistic community has been in shaping our world?

Steve Silberman: Very much so. I want to be careful, because I think a lot of the people that shaped the digital technology that we use today might not have had diagnosable autism, but they had autistic traits. And I kept coming across that as I went through history. For instance, this guy Hugo Gernsback who was an entrepreneur who launched both the amateur radio movement and Pulp Science Fiction magazine, certainly had autistic traits. I don’t know if he was autistic but his biographer certainly believed so.

Many of the programmers at the Massachusetts Institute of Technology (MIT) who helped develop prototypes of the early internet clearly had autistic traits. There was a book written in the 1980s about early Silicon Valley, called “Silicon Syndrome”. It was about relationship problems women had with their husbands who seemed to have very few friends and very narrow focus. In other words, silicon syndrome was a very good description of Asperger syndrome before the term was even invented. I saw traces of people with clusters of autistic traits, working on these technologies that have now benefited all of us because they allow us to communicate remotely.

AE: You have expressed the fact that, personally, you dislike the terms “high-functioning” and “low-functioning”, because you find them to be “off-base”. Could you explain a little more why you think this is?

Steve Silberman: I think these terms obscure more than they illuminate. I think “high-functioning” people often struggle in their daily lives to adapt themselves to the neurotypical people around them, and I think those struggles are very difficult. At the same time, research has shown that things like savant abilities are just as present, if not even more present, in people who are non-verbal or struggle with language. People described as “low-functioning” often have more abilities than people give them credit for, which could be brought out if they were given the appropriate support and accommodations, and tools for communication. And I think people who are routinely described as “high-functioning”, as if they have very little problem getting through daily life, are really struggling behind the scenes. So I avoid these terms because I think they’re inaccurate.

AE: In chapter 11 you go in to the self-advocate movement, and talk about some examples of those who are the most well known in America. Here at Autism-Europe self-advocates are key to the way we operate. In your opinion, what do self-advocates bring to the movement for the rights of autistic people that those without autism cannot?

Steve Silberman: They provide us with an insider’s view of autism. They can tell you what it’s like to experience the world with an autistic brain. This is something that was not available in previous generations because, particularly in America, adults could not get an autism diagnosis until the 1990s. So autistic children and their families never had models of successful autistic lives that they could look at to guide their choice of therapy or education. So autistic people are experts at leading autistic lives. I am not saying that clinicians are not experts. Clinicians are experts at clinical descriptions of autism, but autistic people can provide us with an insider’s view of not only what autistic lives are like, but also what autistic people and their families really need. For instance, autistic self-advocates have been crucial in focusing the attention of the media more on the need for support and services, because parents quite naturally often wish that their children did not have autism so that they would suffer less. So that has contributed to the narrow focus on cure. But autistic people, in groups like the Autistic Self-Advocacy Network in America have been more focused on what we can do to help autistic people and their families now.
One of the things I think is great about the National Autistic Society is that when I go there, their events have autistic people there, and not just “high-functioning” people, but non-verbal autistic people too. They also have parents in the audience, clinicians and researchers, so it’s a very mixed group, in spaces that are designed to be autism-friendly.

AE: What do you think would be needed to develop further acceptance in society?

Steve Silberman: Well I think it’s really important to include the voices of self-advocates in the media coverage on autism. For decades the conversation about autism in the news was basically behind the backs of autistic people, as if they had no opinion and, you know, couldn’t even speak. For a long time the definition was so narrow that it was only limited to children who couldn’t speak. Now, since the 80s and 90s, we realise the world is full of autistic adults. Imagine stories about people of colour that never quoted people of colour, you know, that would be terrible! And so I think that having autistic voices in the media will help destigmatise the condition. 
Another thing I think will help is there’s a very popular TV show for children in America called Sesame Street, and they recently introduced an autistic character, a little girl, and her character was designed with input from autistic adults, to be an accurate representation of autism. I think that’s wonderful!
I also think another thing that would help autism acceptance is if we stopped using the word “epidemic” to describe the rise in prevalence. When you hear “epidemic” you think of plague, contagion, germs, disease… “epidemic” is a very stigmatising word. By using the word “epidemic” what you are actually promoting is autism stigma. And so I think it would be very helpful if parent organisations, which have become very addicted to the term because it creates a sense of urgency, could create urgency on some other basis, like the fact that there are all these people and families who are desperate for support services and access to diagnosis. That is a public health crisis, but it’s not an epidemic.

AE: How was Neurotribes received by the autistic community?

Steve Silberman: I got the book of the year award from the Autistic Self-Advocacy Network, which is probably probably the most prominent organisation of self-advocates in America, so they liked it very much.

I have heard from some autistic people on blogs that they wish an autistic person had written it, and I completely understand that. What I think helped in a way is that I am gay and married so basically my condition was considered a mental illness by the American Psychiatric Association until the early 1970s, and so I sympathise with people who have been classified as mentally ill and who are just trying to live their own lives. So I think that probably helped a bit.

AE: Are you planning on coming to Europe for any events in the near future?

Steve Silberman: I don’t have any scheduled but if any organisations want to host me, feel free (Steve laughs). But I don’t have anything planned right now. I mean I love coming. I’ve been to two National Autistic Society events. I went to the Professional Conference in Harrogate, and that was actually the first public event I did for the book. What was especially touching was that there were some people who are in the book that were actually there, like Judith Gould. It was a very emotional experience for me.