Inkwell: Authors and Artists

    
Inkwell welcomes Steve Silberman, a longtime member of the WELL
community and author of NeuroTribes: The Legacy of Autism and the
Future of Neurodiversity (Avery 2015), which Oliver Sacks called a
“sweeping and penetrating history ... presented with a rare sympathy
and sensitivity.” Steve is an award-winning science writer whose
articles have appeared in Wired, the New Yorker, the MIT Technology
Review, Nature, Salon, Shambhala Sun, and many other publications. 
His TED talk, “The Forgotten History of Autism,” has been viewed
more than 800,000 times and translated into 13 languages. His
article “The Placebo Problem” won the 2010 Science Journalism Award
for Magazine Writing from the American Association for the
Advancement of Science and the Kavli Foundation, and was featured on
The Colbert Report. His writing on science, culture, and literature
has been collected in a number of major anthologies including The
Best American Science Writing of the Year and The Best Business
Stories of the Year. Silberman’s Twitter account @stevesilberman
made Time magazine’s list of the best Twitter feeds for the year
2011.

Silberman also won a gold record from the Recording Industry
Association of America for co-producing the Grateful Dead’s
career-spanning box set So Many Roads (1965-1995), which was Rolling
Stone’s box set of the year. His liner notes have been featured in
CDs and DVDs by Crosby, Stills, and Nash, the Jerry Garcia Band, and
many other groups. As a young man, he was Allen Ginsberg’s teaching
assistant at Naropa University. He lives with his husband Keith in
San Francisco.

Leading this conversation about Steve's book Neurotribes is Scott
Underwood. Scott has always been grateful that his mother refused to
listen to the teacher who said he get some medication because was
"hyperactive." That was in 4th grade in 1971, and perhaps sparked a
long interest in the brain and how people use it. By day Scott leads
workshops in design thinking, an approach to creative
problem-solving to industry and academic organizations.

Administrative note: if you're not a member of the WELL, and have a
comment or question, please send via email to inkwell at well.com,
and we'll post it here.
  

    
Thanks, Jon! I'm very honored to be here, though it also feels like
a humble homecoming, because I used to spend much of my free time
talking on the WELL, and that was one of the things I had to give up
to write this book. It was supposed to take me a year and a half to
write, but then one year turned into two, then three -- and
eventually five. As a journalist who was proud of always making my
deadlines, I felt like a miserable failure nearly the whole time I
was writing the book. Meanwhile, my approach to the subject was
becoming so personal and idiosyncratic, I honestly thought my editor
would take one look at the manuscript and say, "You're starting the
narrative with some wacky scientist who lived in the 18th Century?
Are you *out of your mind*? You've gotta start with a mom. Who do
you think is going to be reading this book?"

But she didn't say that. It took me years to show ANYBODY any part
of the book (my husband <normal> didn't read it until it was done.)
So pretty much all that time, I felt like I was making my way
through a very long, and very dark, tunnel, on intuition alone. It's
been gratifying, but also surprising, that the book has been so
enthusiastically reviewed. The book feels very personal to me, which
is to say, WEIRD. But it seems to be touching people in the right
place.
  

    

such congrats on the good reception for the book --- i -hope- that positive
reception translates into all sorts of wonderful things -for you-.

a question: how has your thinking evolved since the -publication- of the
book? and what are the kinds of questions you get most often?
  

    
It seems funny to talk about how my thinking has evolved since the
book before talking about the book, but I'll say that one of the
things that's been gratifying is finding out how many people were
waiting for a reframing of autism that takes into consideration the
thinking and writing and perspectives of autistic people, rather
than just the perspectives of parents, researchers, and clinicians.

In part, this is a product of historical dynamics. Through the 1970s
or so, the only people who could be identified as autistic adults
were people who had been diagnosed as children in the 1940s and grew
up -- and many of them were in institutions or did not have access
to technology that allowed them to communicate. Almost everyone
forgets that the diagnosis *was basically not available* to adults
until the early 1990s, when Lorna Wing introduced the concept of
Asperger Syndrome in the DSM and the ICD. Even Temple Grandin
presented herself at first as a "recovered" autistic child --
because who else but a "recovered" person could have gotten a PhD
and a post at a prestigious university?  So, voices of autistic
adults were basically silenced until then, and the 1990s were not
that long ago.

I did attempt to deal with that in my chapter called "Princes of the
Air," which talks about adults who were likely autistic, using
technology like amateur radio to communicate at a distance, before
they became visible to psychiatry with the expansion of the
diagnosis. 

But the writing of autistic adults like Jim Sinclair, Julia Bascom,
Ari Ne'eman, Rachel Cohen-Rottenberg, Lynne Soraya, Lydia Brown,
Nick Walker and many others was crucial in informing the framing of
autism in this book. I'm grateful to them for helping me shed some
of the stereotypes I had and for offering insight into autistic
experience.
  

    

the question wasnt meant as a trivialization of the book in any way! just,
there is such heart and brain and depth of research that went into it --- so
i would have suspected that you would have continued to keep -thinking-
about the issues between when the mss was turned in --- and now.

and i am sure all kinds of ppl, whether neurotypical [whatever that means]
or not, have sought you out/shared their experiences and insights --- post
publication.
  

    
Steve, welcome to the talk, and welcome home to the Well! 

There's so much to talk about with this book, which may be unique in
connecting strands from the Royal Society, Nazi Germany, and Silicon
Valley. We can discuss the spectrum itself, the doctors and researchers
groping along in the dark (sometimes with motivations that are not
strictly clinical), and all those people on the spectrum and those next
to it, sometimes helpful and other times less so.

There's also your journey in researching and writing it. As you say,
you spent five years on on the book, but your original Wired article on
the subject, "The Geek Syndrome," appeared in 2001, so the first ripples
of this story began to reach you fifteen years ago.

So, in addition to hearing about the book and your world since its
publication, I wonder if we can hear the process of discovery that led
from a cover article focusing on a disorder to a viewpoint that suggests
we reconsider our presumptions about mental health.

When did you begin to realize the story warranted a deeper look?
  

    
Scott, here's the thing. Most magazine articles are like snowflakes:
people forget about them two weeks later. But I kept getting email
about "The Geek Syndrome" regularly for about TEN YEARS. I got email
from parents, from clinicians and researchers, and from autistic
people themselves. Most of this email was about the truly scandalous
lack of services for autistic people and their families,
particularly once kids "aged out" of services.

That's what autistic people and their parents are worried about and
grappling with every day. You have people who are very smart and
excellent at what they do, but because autism presents some very
specific challenges in dealing with social and sensory environments,
special forms of support and accommodations are needed, even if the
autistic person doesn't APPEAR to be visibly disabled. That's why I
avoid terms like "high functioning" and "low functioning," though
they're used almost universally by clinicians and parents. Behind
those labels, so-called high functioning people are often struggling
much more than is apparent to the casual observer; while at the same
time, allegedly low-functioning people often have talents and
abilities that could be brought out with, say, better communication
technology or elimination of sources of sensory distress. Autistic
teenagers desperately need training programs (including mentoring
from autistic elders) to help them transition into the workforce,
but very few of these exist.

Meanwhile, however, in the ten years after my article was published,
the whole world was having a very different conversation: a very
loud and rancorous argument about whether vaccines or mercury cause
autism. These issues dominated virtually every single conversation
about autism in the media, particularly in comment threads. The
commenters would quickly sort themselves into people citing studies
that showed that vaccines and/or mercury do not cause autism, and
other people angrily calling those people "shills for Big Pharma."

Do I understand why parents are worried about Big Pharma? Do I
understand why smart, informed people think that Big Pharma, or
corporations like Monsanto, are capable of mounting a world-wide
conspiracy to cover-up a global epidemic of vaccine injury or brain
injury from pesticides or any other toxic factor in the environment?
Yes, absolutely. These industries are fully capable of lying about
the harms created by their products. Meanwhile, virtually every
story about the dramatic spike in estimates of autism prevalence
that began in the 1990s referred to the factors behind the rise as a
"mystery." That's not very comforting to parents.

So I began to ask myself, why is it such a mystery? Why don't we
know? It began to seem to me like a failure of science journalism to
simply shrug and say "it's a mystery" or "the factors behind the
rise are unknown" when the consequences of both the rise itself
(because of the lack of services) and the spreading fear of vaccines
are so dire. So I became resolved to get to the bottom of these
issues.

Which ended up taking much more time than I thought. But the truth
is, even parents who are absolutely convinced that vaccines made
their child autistic need to know the information in my book,
because you can't skip over it and pretend that you're still serious
about knowing what's been going on with autism in the past couple of
decades. You may not come to the same conclusions that I have, but
you need to know the information I discovered, which challenges the
basic timeline of events in autism history that has been assumed to
be true for 70 years.
  

    
A tremendous book.  The best non-fiction I have read in several
years.  Maybe the best survey of a subject that I have ever read.  

I am self-diagnosed (with later confirmation from an M.D. friend)
Asperger's.  This book lit me up over and over.  I had to stop
reading it a couple of times when I got overwhelmed with
identification.  I don't know how much I will participate in this
discussion but I will be reading it closely.
  

    
I have thought for years that half of the "mysterious rise" in
autism diagnoses is that it is no longer acceptable to decide people
are "retarded" and remove them from society. I'm only halfway
through the book and am beyond shocked and horrified to read the
extent of how widespread and brutal this practice really was. As
frustrating as the modern state of understanding around autism is, I
have a new gratitude for where we are now vs just a few decades ago.
  

    

Thank you, Steve, for this book and your exhaustive research and thinking
about the issues. It's a page-turner, so exciting I can barely put it down
even when I want to sit and think about what I've just read. I'm in the
midst of travel and deadlines, but I'll be back in a few days.

Meanwhile, thank you and bravo!
  

    
It is a great book, I found it so hard to get through the parts
about what the Germans did and the part about punishment, it must
have been hard to write that and be alone with it.
  

    
Thank you so much, <pjm>, <pixie>, <debbie>, and <wickett>! Yep, I
cried often during the Asperger chapter.

Yes, "mentally retarded" was a diagnosis dispensed liberally,
particularly to autistic people of color whose families couldn't
afford to take them to ten specialists (according to Stine Levy, an
autism clinician who started in the 1940s) to get the more upscale
diagnosis. One of many factors that kept estimates of autism
prevalence artificially low for most of the 20th Century.
  

    
Hello, darling.  I am so happy for you, and happy too for your mom
who's bursting her buttons with pride.  Just wanted you to know I'm
reading along here -- and again here on The Well am just dazzled by
the way you write.  
  

    
Steve, you do a terrific job of laying out the facts, and it's hard
to believe someone could read the book and come away believing that
their energies are best spent looking for an elusive cause than
giving these people the support and environment that will help them
thrive in many wonderful and surprising ways. (Of course, there's a
lot of things I believe that about, but people will hold on to their
beliefs tightly.)

I can believe you were crying while writing about Asperger, the risk
email of the Nazis, and the connections between the killing of these
innocents and the killings of so many more only a short time later.

And yet Asperger seems so prescient and generous, especially
compared to other doctors working in roughly the same arena but
seemingly less aware of what they were looking at. 

That was just as disheartening to me, knowing that it represents
only one small story in the history of science and how it sometimes
progresses according to ego and ignorance rather than otherwise, and
hurts and destroys so many lives, in this case not only of the
affected children but their parents, especially the mothers.
  

    
Congratulations on the publication, Steve, and nice to see you back
on The Well.

I look forward to reading NeuroTribes, just placed the order. It
looks to be opening up a subject that has been poorly understood for
far too long.
  

    
("risk email" should be "rise" of the Nazis, above.)
  

    
Thanks for this book Steve. My 18 year old has recently been
diagnosed with autism. She's doing well and is brilliant but it was
hard to have doctors take her seriously about it. She was really
good at hiding anything that made her different until it became too
much in high school. 
  

    
This may not be the place, but Steve I am interested to hear your
take on Malcolm Gladwell's piece on the psychology of school
shooters in the New Yorker this week. I am still trying to process
it, myself.

Spoiler alert: uh, well, you've probably guessed it.
  

    
Steve, your interview on Fresh Air was the best explanatory talk I'd
heard in years. Thank you.

Do you know of any statistical studies that put the rise in autism
diagnoses into detailed historical perspective? Your synthesis makes
perfect sense to me. It would be good if it were nailed down as the
consensus explanation.
  

    
Steve, a tangential note, since you were involved in the early
days of Naropa, you probably knew Bataan Faigao, but you may
not have heard of his passing, about three years ago, while on
a pilgrimage to China's Wudang Mountains.

Facebook memorial at https://www.facebook.com/bataan.faigao
  

    
<pixie>, I'll put a post together about the Gladwell piece later
today.

<karish>, there's an excellent book by a sociologist named Gil Eyal
called "The Autism Matrix" about the expansion of the autism
diagnosis, and diagnostic substitution issues (people previously
diagnosed as "mentally retarded" who would now be diagnosed as
autistic, and so forth). It's a tad dry and academic for most lay
readers, but if you're interested in this stuff, it's a must-read.
  

    
<satyr>, I'm sorry to hear that about Bataan. I did not know him,
but I certainly heard wonderful things about him.
  

    
Steve, I bought the book since I heard such good things about it,
and I was not disappointed at all. I was diagnosed as a child with
autism, so the subject matter is all too familiar.
    I agree with the others who appreciate the clear thinking and
the resulting clear writing of the book, as well as the clarity of
the Fresh Air interview, among other things.
    Hopefully, your efforts will help dispel the myths and
misunderstandings of those who are sure that vaccines and such are
the cause of our situation. Those who cling to such beliefs are a
stubborn lot, that is for sure.   
  

    
Wow, that's so interesting, <dmsml>. Can you please tell me when you
were diagnosed (both year and age) and what you were doing at the
time? If you want to talk privately instead, we can do that.

About the Gladwell piece that <pixie> mentioned. It's here:

How School Shootings Spread
http://www.newyorker.com/magazine/2015/10/19/thresholds-of-violence

Gladwell is very good at what he does. I am not at all familiar with
Mark Granovetter's theories of riots and thresholds. Like all of the
theories that Gladwell bases his work on, it sounds plausible, and
he knows how to craft a narrative that draws you in, informs you in
an almost casual way at first about this confusing welter of
seemingly contradictory events, introduces the theory you've barely
heard of that happens to have amazing relevance to the issues at
hand, weaves in a few more real world examples, and by the end of
the piece, you're cornered: "OMG, the theory is true!"

The problem is that here,  when you're backed into Gladwell's
corner, he blows the big dog-whistle about boys who play with
chemistry sets, the socially awkward kind, the kind who obsess about
types of explosions, you know, <cough> GEEK SYNDROME. So he manages
to suggest that somehow, now normally harmless dorks have been drawn
into the "riot" -- the teenage fad of killing your family and
blowing up your school. Notice that the autism of his central
character, LaDue, sort of RADIATES to the other characters in the
piece, even if they're not autistic. By the end of the piece, you
feel like every suburban basement is crammed with spectrumy loners
who, instead of ordering a telescope from Edmund Scientific, are now
downloading recipes for pressure-cooker bombs from the Internet.

Is there any research about alleged connections between autism and
violent crime? Yes, in fact there is -- and it suggests that
autistic people are much more apt to be the victims of violent crime
than perpetrators (a useful roundup of studies:
https://iancommunity.org/ssc/autism-crime). Hans Asperger's
successor at the University of Vienna, Kathrin Hippler, did a
followup of Asperger's original patients, and found that they were
no more likely to be convicted of a crime than controls
(http://www.ncbi.nlm.nih.gov/pubmed/20024608). In short, the notion
that autistic people are one threshold away from committing violent
crimes (or two, or five) is contradicted by the evidence. But
Gladwell is too smart to just say it. Instead, he lets the notion
that autistic geeks are prone to being sucked in by the
Harris/Klebold template sort of hang in the air -- and considering
the bullying and violence that autistic people are subjected to
daily (including by their "caretakers" in institutional settings),
that's not good.

There's nothing inherently wrong with investigating possible
connections between autism and violence. But Gladwell didn't look
deeply at that research; instead, he used this LaDue kid to juice up
his story about Granovetter and his threshold theory with a trendy
meme, without really doing the work to support it.
  

    
I'll send you an e-mail message Steve. Well mail ok?
  

    
I love your summary of Malcom Gladwell's vexing writing ...thing
that he does.  

Not as much as I like the book.