Transcript - The Network

Full Transcript of AANE’s Zachary Michaels interview with NeuroTribes author
Steve Silberman
ZM: What initially sparked your interest in autism and the research surrounding
SS: In 2001 I wrote an article about autism in Silicon Valley called The Geek
Syndrome that focused on the idea that focused on the theory that people who
carried the genes for autism, and had autistic traits, had social opportunities in
high tech communities in places like Silicon Valley that they never had in the past,
in part because of things like screen-based communication, and it’s been known
for a long time that a lot of programmers have autistic traits in communities like
Silicon valley, so the theory that was the basis of The Geek Syndrome is known as
assortative mating, it’s a theory proposed by researchers like Simon Baron Cohen
in England, and Dan Geschwind in the United States, he’s a geneticist, Simon
Baron-Cohen is a cognitive psychologist. And so I focused very narrowly on what
might be causing the rise of autism in Silicon Valley, in that article. But I noticed a
few things that happened after that article came out. The first is that I kept
getting emails about it, after the article came out, for 10 years, which is very
unusual in the world of magazine publishing. Everybody forgets an article 2 days
after it’s published basically. So I kept getting emails, and also I noticed the emails
were not really about what causes autism, which is this huge national obsession,
particularly since Andrew Wakefield proposed his discredited vaccine theory. The
media is with “what causes autism?” with every week some new environmental
risk factor discovered or whatever. Well the people writing me were not
obsessing about that, what they cared about was, if they were autistic adults,
even if they wanted to work very much, there were very few programs available
to help them transition into the workforce, and very few companies willing to hire
them due to the messed up priorities of these companies, valuing people skills
over skills-skills, even if the job in question has nothing to do with having people
skills, and then for parents they weren’t writing me with obsessed with the notion
like, “it’s been 10 years since my daughter was diagnosed I’m still obsessed with
the notion that something caused her autism,” no it was they were instead
worried about what would become of their daughter, once she aged out of
services once she graduated high school. So what I discovered was that the
national agenda was centered around potential causes and cures for autism, but
what families were really struggling with had nothing to do with causes and cures.
They were struggling with a lack of services and supports. And autistic people
themselves were dealing with bullying, being excluded from the job market,
generally feeling like they were stigmatized in society, and feeling like they were
further stigmatized by organizations that kept insisting that autism was an
epidemic. Autism Speaks used the term epidemic in its press materials over and
over, up until fairly recently, and one of the problems with the word epidemicautism organizations love that word because it attracts attention “Oh my God it’s
an epidemic!” you know, but one of the problems is that it renders previous
generations of autistic adults invisible, because if it’s an epidemic now that means
it was not very common before… anyways that’s a lie. So I started to think,
someone’s got to figure out what the main dynamics feeding into the rise of
diagnosis is. And so I realized pretty quickly that it would take years of research to
do that. So that’s what I did.
ZM: So your initial goal was to find the reason for the cause in diagnosis?
SS: Yes, and also to look at autism outside the medical context, to look at it in a
social and historical context because, as we all know, there are thousands of
books about autism out there, but they usually fall into three categories, first
there are autobiographies by autistic adults, which are great because at least
they’re accurate, generally. There are sort of critical books looking at autism as a
medical problem, and there kind of self-help books for parents. So I was amazed
that nobody had ever done -- actually that’s a misstatement, there was one book,
called A History of Autism written by Adam Feinstein, and it’s a really excellent
book, but alas it costs like 70 dollars. So many of the people who would most
need to read a book like that, might not read Adam’s book because it’s expensive
and it was positioned as an academic book. So I wanted to write a book that
would be as compelling as a medical mystery or a page turner, so people literally
wouldn’t put it down, but would be scientifically accurate and historically
accurate. So that’s what I tried to do.
ZM: So did you have a target audience in mind when you were writing this book?
Because it’s not really an academic book, and it’s not really a self-help book for
parents, so what target audience, if you had one, were you thinking of when you
were writing it?
SS: It was a very, very broad audience that I had in mind. It was everyone from
autistic people themselves, because I know how tired they are reading books
designed to tell them how many deficits and impairments they have, it’s
depressing. I also wanted parents to read it, because parents are so terrified by
the notion that vaccines cause autism, so I thought it was very, very important, as
real childhood epidemics like measles and mumps are coming back because of
parent’s refusing to vaccinate their children, I thought it was important for
parents to read it. I thought it was important for clinicians to read it. Believe it or
not even people that have been in the field for 30 years don’t know the stuff
that’s in my book, because I discovered a lot of things that people had ever talked
about before. There have been suspicions, people have suspected maybe there
was some connection between Kanner and Asperger, but nobody knew what it
was until I found it. I also wanted people with absolutely no personal connection
to autism to read it, because autism is in the news all the time, and people are
constantly coming up to me and saying “So it’s the vaccines right?” “No it’s not
the vaccines.” And these are not necessarily people with autistic kids or autistic
relatives necessarily, they just read the news. So I also wanted to reach a general
science readership. And it was very ambitious, but it seems to have worked.
Zachary, do you know that the book just became a New York Times best seller?
ZM: No, how long has it been out? I thought it just came outSS: A week!
ZM: Yeah. So, congratulations!
SS: Thank you buddy.
ZM: So you’ve talked a bit about vaccines already, but I think your book touches
on a lot of possible misconceptions and stereotypes, so I was wondering what
misconceptions you think NeuroTribes might alleviate or challenge in some way.
SS: One of the main… well there’s so many misconceptions about autistic people,
and the way that I sort of got beyond the misconceptions is, one of the first things
I did, was go to Autreat, which is an autistic retreat designed for autistic people by
autistic people, so as an NT I was very much in the minority at Autreat, and that
was great. For one thing I got to see autistic people just hanging out, instead of
seeing some kid in a clinic with his parent’s or whatever, I got to see autistic
people just kind of being themselves with each other, and that was great. And the
other thing is that I got to see what it was like to be a neurological minority for
the first time in my life, and that was also great, it was very instructive. I
remember when I went there my head was filled with all these misconceptions.
Like autistic people suffer from problems with empathy. Well it was pretty
obvious that most autistic people are in fact intensely empathic but that they
might have problems taking another person’s perspective, figuring out where
another person is coming from, but it’s not that they lack empathy or something
like that. They are obviously very concerned about how other people feel about
them, and often suffer from other people’s bad opinions. It’s not that they don’t
care or can’t feel what the other person thinks about them. Slightly less
dangerous, but equally prevalent, is this misconception that autistic people don’t
get humor. Autistic people are hilarious, they have very dry wit, and they
appreciate certain forms of sarcasm and irony almost better than NTs. It’s almost
like when I first went to Finland, I first thought, “Oh my God, these people are
completely humorless, they never laugh.” But I figured out after a couple days
that they were actually hilarious, and making witty comments all the time, they
just didn’t do it in this really blatant American way. And the same thing was true
of the autistic community in Autreat, which is that they were constantly making
jokes. For instance, when Ari Ne’eman was introduced, he had just been
appointed to the National Council On Disabilities by Obama, he was introduced
with a big round of flappause, which is people flapping their hands instead of
clapping, and then a girl in the back yelled out “We’d love you Ari, if we were
capable of feeling such an emotion!” (laughs) which was hilarious. So autistic
people not only have a keen sense of irony, they have a keen sense of irony as it
applies to misconceptions about them. Another thing I saw at Autreat was, when I
first got there, I saw a kid who appeared to be having a meltdown, he was
primarily non-verbal, he was screaming, he was running up and down the halls,
dragging his mother down the hall, and I thought “Oh my God, this is really heavy,
this is severe autism.” And I later found out that he was doing it because he was
extremely happy, because he was going to be seeing his autistic buddies again
and Autreat. So when NTs look at Autistic people they often see their own
prejudices instead of the people in front of their eyes. I learned that by going to
Autreat. So the most dangerous misconception about autism is that there were
no autistic adults in the past, or that autism used to rare in the past and now it’s
common, the dangerous thing about that is it renders previous generations of
autistic people invisible and that creates a bad federal research agenda,
inadequate allocation of resources for families and autistic people, and one of the
reasons that autistic people in the past are invisible, is because if they were
profoundly impaired they were institutionalized, which is one of the great
injustices of the 20th century that I tried to bring to light in my book. So now when
people like Age of Autism say it used to be rare, they’re actually committing a
double injustice against autistic people.
ZM: So in your recent interview in NPR you talked about how you refrain from
using the terms “high functioning” or “low functioning.” It was interesting
because I didn’t really notice it while reading the book, but after I heard that it
was really obvious in it’s absence. So I was wondering if you could elaborate on
your logic behind abstaining from those terms.
SS: Well I know the terms high functioning and low functioning are very widely
used, and that some parents and clinicians find them useful, but I avoid using
them because I think they’re misleading. I think so called “high functioning”
people are often struggling more than is obvious from their outward appearance,
like they may be able to strive hard to fit into a neurotypical setting, but it may be
taking a toll in anxiety and depression that the NTs often won’t notice. And I think
that “low functioning” people often have talents and aptitudes and abilities that
are not obvious, because they can’t talk, or maybe they are stimming a lot or
something. So I think people underestimate “low functioning” people, and
underestimate the struggles of “high functioning people.” I also just think it’s
insulting. I mean, who wants to be called “low functioning?” I have friends who
are non-verbal, some of them are functioning very well, they’re just non-verbal.
Those terms are just so loaded with social assumptions. So even though I would
admit under duress, that some autistic people can meet the challenges of daily
life more easily than others, or some may require more support, that’s obvious,
but those terms are used, unquestioningly, way too much.
ZM: You mentioned Autism Speaks earlier, and you recently had an op-ed in the
LA Times criticizing it, and generally talking about organizations and funding
issues. What do you think autism related organizations might be focusing too
much on or not enough on? What kind of change would you like to see?
SS: Well Autism Speaks is spending way too much on research for discovering the
cause of autism. I’m not saying we shouldn’t be doing research to relieve the
suffering of autistic people, for instance a lot of autistic people have seizures,
seizures can be deadly, we should definitely be putting money into- I’m not
against science, I’m a science writer, I’m pro-science. Many of my friends are in
autism science, so I’m not against genetic research, it’s just that, why aren’t we
doing more to help autistic people not have potentially fatal seizures, while we’re
spending 50 million dollars to the Beijing Genomics Institute to discover more
candidate genes for autism when we’ve already found 600 to a thousand, and
we’re still no closer to “preventing” autism. And I also think that the idea that we
could prevent autism, through prenatal testing and selective abortion, has
potentially very grave consequences for our society, because one thing that is
clear is that autism is sort of a fellow traveler in the human gene pool, with
certain forms of intelligence and aptitude. Temple Grandin has warned for a long
time what could happen to the human race if we attempt to remove autism from
the gene pool, as the Nazis did, and I agree with her. Here are three things I think
autism organizations should be focusing on. Firstly, improving quality of life for
autistic people. Another is research into women on the spectrum. We still know
so little, this assumption is repeated so often, “4 times as many cases of autism in
boys as among girls” that’s not a good fact, we don’t know really. Autism presents
so differently in women, so it may be true, there may be some interesting thing
going on with hormones or a protective effect in the genes or something, but we
don’t know really. We’re still at the preliminary stages of research on autistic
women. Another is autism in minority communities, and in impoverished
communities, who have been ignored for decades. In fact one of the things I
regret about my book actually, is that I didn’t have more time to cover in minority
communities, and that’s in part because most of my book is about history, and so
few people with autism of color were diagnosed in previous generations that
there wasn’t really that much for me to work with. What used to happen, and I do
talk about this in the book, is that people of color would be diagnosed with
“mental retardation” instead of autism. So someday I would like to write more
about autism in minority communities. So those are three areas of research that
are starving for attention while we’re sifting through the human genome for
another hundred candidate genes. Yes it’s interesting that we’ve found all these
candidate genes, but does it really help people in their daily lives? I just want us to
ask that question as a society. We’re so busy patting ourselves on the back “we’ve
spent more than a billion dollars on autism research in the last 10 years!” Yeah,
but on what? We still don’t know what the prevalence of autism among adults in
America is. That famous 1 in 68 CDC figure is for school children. Why don’t we
know what the prevalence of autism in America is? And in England someone
asked that question and found lo and behold, the prevalence among adults was
the same as among kids which suggests that the prevalence has not gone up at
all, yet as a society we’ve been pretending that they are.
ZM: So I had this question more towards the end, but I think you were talking
about a related point, all, or almost all of NeuroTribes is kind of focused on autism
as we understand it in the western world, and from that kind of perspective. I was
wondering if you knew of any kind of research maybe medical anthropology, or
any other field of academia that would broaden that perspective.
SS: Yeah, absolutely. One of the books that was a model for mine was Roy
Richard Grinker’s Unstrange Minds, that looked at how autism is thought about in
other cultures and third world countries even, and I thought that was a fantastic
book, in a sense I thought they didn’t have to write that book because he did such
a great job, he’s an anthropologist, so Unstrange Minds is a brilliant book, very
ahead of its time, and a must read for people interested in how autism is framed
in different cultures.
ZM: Okay. Yeah, your book is so definitive in a lot of ways, so I was wondering
where someone could go from there…
SS: Yeah, it’s a great book. Another-sorry I know you’re not asking me for my
recommended books- but another book that just came out this month that I think
is fantastic and ground breaking is called Uniquely Human by Barry Prizant. A lot
of parents ask me “what books should I read?” and Uniquely Human is like the
lessons of history that I wrote about in NeuroTribes but applied to raising autistic
kids. So that’s another fantastic book that sort of completes the picture of viewing
autistic people with respect, rather than as people with a medical problem that
need to solved.
ZM: So I have a few questions related to pop culture, because I really like how
your book puts autism in a sociological context, I was a sociology major in college,
so it was really interesting to me, and it’s not something that really comes up very
much with autism. So you talked about the effects of the movie Rain Man on
perceptions of autism, what would you say were some of the positives and
negatives that film had, and maybe how has pop culture evolved or failed to
evolve since…I guess that’s almost like a three part question…
SS: No, it’s a great question, Rain Man was absolutely groundbreaking for it’s time
because the diagnosis of autism had only recently been made available to adults
in the United States, so what many people did not realize, looking back at that
film, was seeing an autistic adult on the screen was a completely new experience,
even for people who had been in the autism community for decades by that
point. Very, very few people had seen any representation of autism in adulthood.
So it was amazing, and it turned autism virtually overnight, from an obscure,
allegedly rare, condition of childhood, into a subject that everyone was talking
about. The number of magazine and newspaper articles on autism soared
immediately after Rain Man. And on his tours to promote the film Dustin Hoffman
would relate autism to everyone, he made it a universal concern, rather than this
weird syndrome. So all respect to Rain Man. There are two problems with it. One
is that one person cannot stand for an entire, invisible population. As we know
autism is an incredibly broad spectrum. People with autism are more different
from each other than neurotypical people are. So how could one man stand in for
such broad and diverse population? The answer is he can’t. He’s an old white guy,
that’s all he’s ever going to be, so he can’t stand in for a black autistic woman.
There’s a limitation of Dustin Hoffman being a single person standing in for a
whole diverse population. Another problem is that at the end of the film he goes
back into the institution, and he is depicted as being unable to live on his own. As
I talk about in NeuroTribes the great irony of that the real life model upon which
the character od Raymond Babbit was based-people like Peter Guthrie and Mark
Rimland- were not living in institutions because their parents refused to take the
advice of the psychiatric establishment and put them there. So they were living
on their own with their parents help. Peter Guthrie has worked at the Princeton
University Library for decades now, Mark Rimland has never lived in an
institution. In a sense Raymond Babbitt was doing worse than the real life
autistics that inspired him, and that was something that the screenwriter Barry
Marrow did not agree with. In Barry Marrow’s original script Raymond lived with
his brother Charlie Babbitt at the end of the film. They lived happily ever after sort
of. But Hollywood, and some of the autism experts who weighed in, said it would
be better if he went back the institution. So that’s another problem. In a way it’s
like the last gasp of the autistic people should live in institutions meme.
ZM: It’s kind of a usual thing for a Hollywood movie to have a bleaker ending, and
that be the inaccurate…
SS: Yeah absolutely.
ZM: So that’s how pop culture has viewed and portrayed autism, but that goes
both ways, because you talk about how autistic people have contributed to
popular culture, in particular science fiction, so I was wondering if you could talk
about how popular culture has been influenced or how some aspect might be
indebted to autism or autistic people.
SS: Well the main character in the chapter of my book called Princes of the Air was
an entrepreneur called Hugo Gernsback, who really popularized both ham radio
and pulp science fiction, and his biographer, Gary Westfahl, believed that Hugo
was on the spectrum, and if you look at his behavior, Hugo’s behavior was very
eccentric, but he was very, very good at doing things that ended up benefiting
autistic people in a million ways, building communities based on remote
communication, so even if you were too shy to leave the house, or had problems
with spoken language, you could talk to other to other ham radio operators or
hams, using Morse code starting in the first decade of the 20th century. So ham
radio became a refuge for – at that point we’re 80 years away from coming up
with a diagnosis for autistic adults, so these early ham radio operators, who had
no idea that there was a label for their condition, they just felt like social recluses
or were perhaps weird to their peers, but suddenly there was this medium where
they could A) become fascinated by electronics, which is something many autistic
people seem to be interested in, taking elaborate machines apart, putting them
back together, studying the subject very in depth, and almost as a side benefit in a
way, you could communicate with other people that were like you. The first
person to notice that autistic people were attracted to science fiction was Hans
Asperger. Early on he talked about his patients’ obsession with rocket ships, and
at first he had kind of a dismissive attitude towards this, he said “one can see in
their fascination with rocket ships how divorced from daily reality autistic
people’s interests really are.” Well 20 years later when the whole world is
obsessed with rocket ships and autistic people were helping build them at NASA
he changed his tune, and actually sort of apologized for the earlier remark. So it
seems that Hugo Gernsback in the fiction that he published in his magazines, he
had a whole empire of magazines, he basically pre-imagined the modern world in
so many different ways, everything from television, which by the way, was a
technology that debuted on one of Gernsback’s radio stations, to space flight, to
the internet- Gernsback was talking about typewriting by wire back in the 1920s
or something, and that’s basically the internet, typewriting by wire. He was
imagining Skype in the 19-teens. He also worked with Nikola Tesla- a couple of
the reviews of my book have said, “Silberman says Tesla is autistic.” I don’t know.
I do say that Gernsback was probably autistic because I have it on higher authority
from his biographer that he probably was, but I’m not about retro-diagnosing
people willy-nilly, so I don’t know if Tesla was autistic. But one thing he wasn’t
was neurotypical. He had a lot of autistic traits, and he was a frickin’ genius. So
Gernsback and Tesla, neither of them neurotypical, imagined the modern world,
which eventually came into being, it’s the world we’re all living in now. And
Gersback’s magazines helped launch fandom in a big way. Science fiction fandom
was the first modern fandom. And he did it by allowing readers to get in touch
and form clubs because he thought it would be good for marketing. So there
would be science fiction clubs, and they would be havens and sanctuaries for
interesting geeks. Just like Ham radio had been. I know a lot of autistic people
who are into various fandoms, it’s turned out to be that way ever since the
beginning of fandoms which were created by someone who was probably autistic.
ZM: So this question is pretty topical, and I honestly don’t know how many people
apart from me would be interested in it, but Gernsback’s magazine Wonder
Stories, you mention in your book, took a neutral stance on Hitler by publishing
German translated stories, something along those lines, and that seems to be
something that’s persisted in a way, not obviously in being neutral towards Hitler,
but it seems to me that every part of pop culture that autistic people are
particularly attracted to there seems to be this debate about whether or not it
should be “apolitical” and there was this whole controversy with the Hugo
Awards (interviewers note: The Hugo Awards are science fiction awards held in
honor of Hugo Gernsback). So I was just wondering if you had any thoughts at all
about whether genre fiction, and things related to science fiction, if they are best
as pure escapism, or if by being apolitical it might be squandering an opportunity
that autistic people have to become more connected to a world that they might
be detached from? Does that question make sense? Do you have an interest in
SS: Well in fact you said it so well I don’t really have anything to add. (laughs) I
actually think that’s a really astute question about genre fiction, but because I’m
not really an expert on genre fiction I don’t really have anything to add, but I think
that is a fantastic… I would love to go to weekend conference on that question.
ZM: Yeah, I have opinions but I didn’t want to editorialize…
SS: No no, it’s great, I just don’t like to talk about stuff where it’s just me kind of
manufacturing an opinion so I would say that I don’t know enough to answer it
intelligently, but boy did you ever ask it intelligently.
ZM: (Laughs) That’s very fair…
SS: Could I suggest a question that might be good?
ZM: Sure.
SS: Steve you are gay, do youZM: Actually that was kind of going to be the next question, I was just going down
the list, and because we’ve touched on questions I was going to ask… so (now) I
was going to ask do you think there is a movement that the neurodiversity
movement has parallels to, or could learn from? And I was kind of thinking about
the queer rights or LGBT rights movement.
SS: Yeah, I don’t think it’s any accident that one of the founders of the autism
rights movement Jim Sinclair, considers… I don’t know the right pronoun to use…
it’s an invented pronoun, so I don’t want to say himself… gender neutral.
ZM: I think you can say themselves and that will probably be politically correct.
SS: Sure, I also don’t think it’s an accident that three of the best known writers on
the subject of neurodiversity, me, Oliver Sacks-who didn’t really call it
neurodiversity but was expressing a neurodiverse perspective-, and Andrew
Solomon, author of Far From the Tree, are all gay. Or were gay, in the case of
Sacks. I think we know what it’s like to be outside of society, and to be
stigmatized by the medical profession, and to have our perceptions dismissed as
expressions of pathology, and so I don’t want to overwork the gay=autistic
metaphor, because it’s wrong and off-base in many ways. But I do think that gay
people like myself, may have a perspective on being bullied, being stigmatized,
being outside of society, that may be useful when looking at the evolution of the
diagnosis of autism, and the emergence of the autism rights movement. And I find
it very interesting, in fact fascinating, that so many young people on the spectrum
identify themselves as either gender non-binary, or gender queer. I have an
autistic nephew who is either trans or gender non-binary. Boy that is a really
fruitful area of discourse and collective consideration. Is it that autistic people are
immune to socialization thus free to experience their gender non-binaryness, or
their gender-queerness, or is there something about autism that encourages
people to be that way? I think that’s really interesting. That’s another area that
we’re just at the beginning. But I’m really excited, I hear there’s an anthology of
gender-queer autistic writing. I can’t wait to read it.
ZM: So for my last question, you’ve just completed this book, it’s really extensive I
believe it took 5 years to write…
SS: Yes.
ZM: Do you plan to continue to do work relating to autism? Or now that you’ve
finally finished this book are you more interested in branching out and working on
a different topic?
SS: Well I am interested in continuing to write about autism for two reasons.
There are many stories that were very generously offered to me by autistic
people that I was not able to use in the book because of space consideration. The
book had to be cut by 300 pages because who’s going to read an 800 page book?
Already people are complaining “It’s a lengthy tome!” Yes, it’s a lengthy tome, I’m
sorry, I tried to make it exciting. I think my editor was right when she said, “We
could include these 300 pages, but then no one would read the book and it’s
really important that they do.” So I have a lot of autism stories and I would like to
tell them in some form. I don’t think I’m going to be writing another autism book
though, because A) I think I should not be speaking about autism so much. I think
autistic people should be speaking. I never lose sight of the fact that I’m an NT,
with NT privilege, and furthermore white male NT privilege. At least (it is) not
white male heterosexual NT privilege! (laughs). But I’m in a position of privilege,
and I’m trying to use that privilege now to signal boost autistic voices, as I’ve been
doing for some years now. But my time in the spotlight should, necessarily, be
limited so autistic people and non-white males can have the spotlight. So I’m not
planning on writing another book about autism. You never know, but I think
autistic people need more platforms to be listened to.