Shannon Des Roches Rosa
|Steve Silberman and Leo Rosa
[image: a white man with short salt-and
pepper hair, and a white teen boy with short
curly brown hair, sitting on a green bench.]
Steve Silberman’s long-awaited book NeuroTribes: The Legacy of Autism and the Future of Neurodiversity arrives in bookstores today. Finally! If you have any interest in autism whatsoever, then trust me, you need this book. (No, really. We are so excited that NeuroTribes exists that we’re hosting a giveaway, details below.)
I’ll be upfront with my disclosure:
When Silberman described his intention to write a book that “upends
conventional thinking about autism and suggests a broader model for acceptance,
understanding, and full participation in society for people who think differently,”
my family and I agreed (and were honored) to be included in the project.
But I would recommend NeuroTribes regardless; I’ve been pining
for an autism book this information-rich, this compassionate, this beautifully written,
this revelatory, and this necessary, ever since my son was diagnosed with
autism eleven years ago. And I hope you will agree.
I spoke with Mr. Silberman earlier this month, about some of the many topics and people featured in NeuroTribes — including the concept of neurodiversity, the myth of an autism “epidemic,” the difficulty of condensing five years of research into a single book, and why autistic leadership matters. The bulk of that interview is also up today, at BlogHer. The rest of our discussion follows.
You uncovered disturbing scenarios from Ivar Lovaas’s work with autistic
children at UCLA, while he was developing Applied Behavioral
as a “treatment” for autism. How did he get away with behaving so
badly towards those children, according to your research?
Steve Silberman: The outrageous cruelty of Ivar
Lovaas to the children in his clinic in the 1960s was unforgivable, but it was
also a very complex thing. What isn’t a matter of debate is how monstrous,
barbaric, and inhumane some of his methods were. He would give pre-schoolers
painful electric shocks to encourage them to hug the experimenters, and to
punish them for exhibiting behavior like echolalia, which turns out to be a
distinctively autistic way of learning language, as Barry Prizant explains in
his fabulous new book for parents and clinicians, Uniquely Human.
We should be quite blunt: Lovaas was engaging in torture, by any standard.
But it’s also crucial to understand how he excused his own behavior, which was
that he earnestly believed he was saving these children from an even worse
fate: life-long institutionalization. He would see children who had chewed
through their own fingers in places like Camarillo State Hospital in
California. The problem was that he didn’t ask if this self-injurious behavior
was the natural course of autism, or if it was the children’s response to being
put in brutal institutions, where they were subject to isolation, restraint,
abuse by the staff and other residents, and so on.
We have to remember that Leo Kanner’s recommended course of treatment for
autistic children was institutionalization, to remove them from the family
environment that he catastrophically blamed for causing their autism. So, with
very few exceptions like Temple Grandin — who escaped that horrible fate
because her mother Eustacia refused to put her in a place like Camarillo, and
because she was diagnosed with “minimal brain damage” rather than autism — two
generations of profoundly disabled autistic kids ended up on psych wards, in
straitjackets, being beaten by the staff and drugged out of their minds.
Compared to a lifetime of that, Lovaas must have thought, what are a few
This is why it’s so important to understand the history that I tried to bring
to light in NeuroTribes — to
understand both how inhumane some of Lovaas’ techniques were, and what he was
Without giving too much away: in researching the history of the Oscar-winning
film Rain Main and how it fits into
our cultural conception of autism, what are one or two discoveries that
SS: The main thing that surprised me
when researching Rain Man was
realizing that Dustin Hoffman’s character of Raymond Babbitt was the first autistic adult that most people in the
world had ever seen. Nowadays, it’s easy to trash his character as an
autistic stereotype — the savant skills, the goofy catchphrases, and so on.
But what the people saying those things don’t realize is that there were no autistic adults in mainstream
media up to that point, with very rare exceptions.
It’s not like now, where every hip new TV series seems to have to have an “Aspie”
character. Autistic adults were virtually invisible to the culture — even to
most clinicians! — because the diagnosis was not made available to adults on a
mass scale until the 1990s. Even Temple Grandin, when she first started making
the rounds of autism conferences, billed herself as “recovered from autism” because
autism was still considered to be a disorder of the first years of life, as Leo
Kanner had originally framed it.
But another really important thing to understand about Rain Man is that it could have been better, because at the end,
Raymond has to go back to the institution, because he is clearly unable to
survive outside of it. Yet the real-life autistic people that Raymond was based
on — people like Joe Sullivan and Peter Guthrie — were living in the
community with the help of their supportive parents. They represented the real natural course of autism: autism
minus the decades of brutality and degradation of being shoved away, out of
sight, in state hospitals. And they’re both still doing fine, though obviously
they’re still very autistic. Peter continues to work in a library at Princeton
University, as he has for decades.
So I ended up having great respect for
what screenwriter Barry Morrow and Dustin Hoffman did with Rain Man, which was to make autism visible to the lay public on a
global scale for the first time in history. With the little caveat that it
could have been better.
Update: The winners are Erin, Kacy, and Mass der Dinge! Please write to us at
thinkingautism at gmail with your mailing address so we can get copies
of the book to you. Winners selected using Random.org.
The publisher of NeuroTribes is letting us give away three hard copies of the book. If you would like to be considered, please leave a comment below, describing why you want your own copy. We’ll use Random.org to select three winners on the morning of Friday, August 28th (Pacific Time).