Inside Out: Steve Silberman | Event – Oct 27, 2015


Okay hi everyone my name is Daniel
Murphy, no it’s not It’s not really. You can tell there’s a science crowd cuz nobody knows you
Daniel Murphy is. I’m Dan Fagin and I’m the director of the science health and
environmental reporting program here at NYU and we are very glad to have you
here it’s wonderful to see this many people here people I know and alumni
from sharp and also folks I don’t know friends of our guests friends from the
science writing community in New York and that is really a great tribute to
what our guest today is up to and that’s Steve Silverman and I will wait and have
Lee as usually hopes give give as usual is a very erudite introduction to our
wonderful guests but I will just say that I personally am really excited that
Steve is here I’m excited about his book which is a really important book and
we’re thrilled to have him here on such a timely basis and when the book is
fresh and new and is very much the talk of the science writing world I’m also
very glad that he’s here well let’s just say I was I was disturbed at the timing
this being for New York Mets fans we’ve waited a very very very very long time
for this but there’s a rain delay in Kansas City and so that means that we
can take our sweet time and have a great discussion with Steve so with that Steve
I’ll just say thank you very much for coming all the way from California and
at this time I will turn the mic over as always to Robert Lee hotz jr.
distinguished writer in residence here at the Carter Institute of journalism
and science writer for The Wall Street Journal take it away leak
thank you and Dan thank you thank you very much for arranging the rain delay I
have powers yeah and I understand that’s the subject of your next book so well
thank you everybody welcome we’re here this evening to turn science journalism
inside out we’re engaged in an exercise here in forensic journalism it’s our aim
with your help to dissect the best work of our profession we want to see clues
to state of mind reporting technique motive writing
practice and the idea is to better understand our craft and maybe improve
our own work so for those of you who’ve been here before this is our third of
four sessions this fall in a way what we’ve been doing is tracking the story
of story this fall we began in September with
science editor Tim Evans our who helped us understand a bit of just what strange
ideas work in the minds of editors and what they’re looking for in terms of the
story and how they structure things and then earlier this month we stay in a
while with Christie ishiwan Dhin who helped us a better understand the
secrets of nailing down an assignment and the joys of heritage poultry and on
November 17th we’ll conclude by talking with globe-trotting science and
environment reporter Hilary Rosner to explore the lengths to which good
science journalists will must go in pursuit of a good story in this case to
the ends of the earth and back but this evening and I want to emphasize this for
those of you who are new this is a conversation not a lecture so as we get
rolling interrupt please help us digress in creative ways
but if I may ask please get the microphone first our batboy there has
got it and he’ll he’ll willingly yield it to a good question so we begin
tonight where so many of all science stories seem to end which is with the
publication the successful publication of an in-depth article in a national
magazine the story was called the geek syndrome it appeared in Wired magazine
attracted a lot of attention the writer our guest this evening
Steve Silverman who I may say has very kindly flown all the way from San
Francisco to be with us now Steve is a reporter who for a decade or so was
stalked by this story because it wouldn’t let go and the result is the
book that you see before us neuro tribe’s the legacy of autism and the
future of neuro diversity now you should understand that Steve intersects many
circles if you love the literature of The Beat Generation you’ll know him
because as a young man he was Allen Ginsberg’s teaching assistant at Naropa
University in Boulder Colorado at the Jack Kerouac school of disembodied
poetics if you’re a rock music fan you’ll know him as a Deadhead of serious
proportions because he in fact won a gold record from the American from the
Recording Industry of America for co-producing The Grateful Dead’s career
spanning box set so many roads which covered their music from 1965 to 1995
and that was I should say Rolling Stones Bach said of the year but he’s also
written liner notes for CDs and DVDs for Crosby Stills and Nash the Jerry Garcia
Band many other groups and he’s in fact co-author of the 1994 skeleton key a
dictionary for dead heads if you were really serious about this as some of us
are and I will say if you ever ate at the Hay Street Grill in San Francisco
you may recognize him because he probably served you seafood he was there
as a waiter for eleven years but if you’re a science journalist you know
Steve because he’s an award-winning writer whose articles have appeared in
Wired The New Yorker the MIT Technology Review Nature salon
many other publications that we swear by and his article the placebo problem won
the 2010 science journalism award for magazine writing from the American
Association for the Advancement of science and I will say featured
prominently on The Colbert Report now his writing on science and culture and
literature has been collected in a number of major anthologies including
the best science best American science writing of the year and best business
stories of the year an unusual combination and he is a social media
maven his Twitter account was dubbed by Time magazine one of the best Twitter
feeds of the year he has 45,000 171 followers and if you’re wondering why
this room is crowded 3,000 friends on Facebook his TED talk this past March on
the forgotten history of autism which arises from his research on this book
has been viewed so far by a million viewers and it’s been translated into 22
languages but here he is before us is the author of neuro tribes which delayed
Oliver Sacks called a quote sweeping and penetrating history presented presented
with a rare sympathy and sensitivity and I hope to take advantage of both during
our conversation this evening now I started by talking about your many
circles and and of course circles have no real beginning or end but your career
has been taken a particularly circuitous route if I may let’s start when you were
five okay you got a poetry assignment what happened oh my god such deep
reporting I’m really impressed yes I won a Fordham University poetry contest with
a poem called the math battle about how I could not deal with numbers and that
was my first experience of being a published author so there was a very
serious picture of me taken this when I was in like fifth grade and that that
poem ended up getting translate sent to Expo 67 which happened in the
previous century for the young people in the room and yeah so that was my first
experience of being a writer um I actually do remember I didn’t tell you
about this in our pre-interview but I do remember the first moment that I ever
thought I might I might be a writer which was I was walking around Fresh
Meadows in Queens because I grew up in New York and I was walking down block
away from our apartment and I realized that there was a sentence that was
continuously unfolding in my head that my thoughts were were words it was like
a river of words and I thought oh I wonder if I’m a writer and so I was like
the first you know other people think in pictures or you know but I thought in
one continuous unspooling sentence and it’s still unspooling do you remember
this beginning of the snow I don’t know I mean it was probably oh maybe I’m a
writer but ya know that was the first moment that I realized that was a word
person yeah we we discovered that mirror in the mind yeah and though I mean the
one thing I will say is that my my late father Donald I used to carry me around
on his shoulders reading James Joyce’s Ulysses aloud so that the sound of those
phonemes must have penetrated at some level so you won your prize you wrote
your poem I mean it wasn’t kind of the way it kind of the science writing
assignment I guess the way you handled it just kind of infected you with the
idea of becoming a poet or did that become later no it it did I mean it
infected me with the idea of becoming a writer and so then when I was in I mean
this seems like really interesting I mean you know if you’re worried about
being boring I promise you I’ll start making things up okay good
yes well when I started reading probably the poetry of Allen Ginsberg in junior
high school I not only liked it I had I felt like I really related to it as if
he was Amy who had gotten into the world earlier and could tip me off to stuff
and you know I look back now and that’s completely
it’s like the Beatles music was you know speaking directly to me you know or
something but everybody felt that way about Alan at least the people around
him but you know eventually I ended up seeing Alan in person giving a poet
writing right and he was the most embodied happy alert awake middle-aged
man you know probably my age at the time now that I had ever seen in my life
and I thought to my eye it was like a big moment like it you know if I was a
Tibetan Buddhist it would be like that’s the moment I recognized my guru you know
and so I saw him on stage at Queens College and I said wherever that guy’s
gonna be next summer I’m gonna like rent an apartment across the street and you
know buy cat litter if that’s what he needs or you know do do whatever that
guy needs that guy is cool like I somehow had this feeling that he
was going to be important in my life and I trusted that feeling and I actually
was that guy it turned out that he he taught at Naropa Institute and I sold
everything I had actually and went to went to Naropa I had written him a
letter to try to get an apprenticeship with him at Naropa he never replied so I
really had to go on a wing and a prayer waited in line because of course he was
surrounded by groupies more or less and that’s why we waited and he said hi Alan
I’m Steve Silverman and he said oh you wrote me that very nice letter so I
thought oh that’s good and so then when I got back to the dorm room I was
staying and there was a note on the door that said mr. Ginsberg would like to
offer you an apprenticeship please go see him at varsity apartments or
whatever so that was the beginning of that and that was really a valuable
experience because it was the first time I saw what writers were like in their
everyday lives like not just a picture on a book jacket or even a mythical
figure from The Beat Generation but the guy eating corn flakes and his t-shirt
you know at the table and he had you know I was like the phone was really
would be Bob Dylan or whatever you know like I saw that like yet you know
literally Bob Dylan like I saw I saw not only what a writer’s life was
like but what it was like to be at the center of a sort of global network of
fascinating thinkers before there was an Internet
so Alan’s rolodex was like the killer internet kind of of smart people in many
different fields and if you just hung out at that table in his apartment
fascinating people would walk in like I remember one day this musicologist who
was figuring out how to play ancient Greek scores of music was there started
talking and then this dancer decided she would do dance to those scores and so to
music that hadn’t been heard in centuries so I got to see like what a
really hooked in guy was like with this fascinating global network of thinkers
it was like I wanted to be that kind of and you’re not sitting here thinking
like you know I should copy numbers out of his rolodex cuz it’s gonna be really
helpful for me know when I’m when I’m a science journalist you know I wasn’t but
the science thing actually I must admit I’ve never said this aloud I have to say
the science thing came out of science fiction it came out of my youthful I was
fascinated by science fiction would you like Robert Heinlein yeah and
there was a an anthology called dangerous visions and ended by Harlan
Ellison and so it was like cutting edge like I mean Carroll here is actually
much more qualified to talk about our levels and though I am but you know he
was he was sort of a it’s almost like proto cyberpunk in a way like you know
edgy really edgy science fiction and I loved that there was a dangerous visions
anthology and again dangerous visions I love that stuff they they were
innovative with form and with content and I just loved science fiction there
was a movie that I became obsessed with by a young director that no one had ever
heard of this movie played at the theater in Fresh Meadows I saw it maybe
10 times when it was there it was only playing a 10 theaters across the country
by an unknown young director named George Lucas
Oh heh x1 138 and still the first 7 minutes or so of thx 1-1 3-8 which of
course you can see on YouTube it’s still one of the most completely mind-blowing
bits of science fiction ever done like give you if you’re into science fiction
and you haven’t seen that movie go look at that first 7 minutes because it’s a
montage of sounds that puts you directly into a very believable palpable world of
the future without any exposition you’re just there like this is a long time ago
in a galaxy far from you know it’s you’re there and it’s completely
fascinating although interestingly enough it’s an analog future it’s not a
digital future but anyway that’s a point that’s the point so in the bay area in
the galaxy a long long time I guess so how did you get from the ropa to the bay
area how did you actually get started I mean you you had no interest in that I
can detect at this particular point in being anything except a poet whose work
like people that you had sort of seen in rubber wood actually had a profound
effect on people actually had a shot at changing the world well that was the
thing yes I wrote poetry for years I would get poetry readings in the mission
at anarchist bookstores and you know my 15 friends would dutifully come and tell
me it was cool you know and I totally didn’t trust that you know like it was
like wait a minute like of course my friends are telling me the poetry is
cool but who cares really you know and I never had the sense that I was making
anything happen with poetry like I was just writing more poems for people who
read poems and I don’t want a dis poetry because I still read it I think it’s
amazing I’m still interested in it but what poetry wasn’t by this point which
was the early 80s in San Francisco it wasn’t the the world shaking thing that
had been when Allen read howl in the late 50s and so Allen Ginsberg had
changed the world really changed the world with the poem and I just felt like
it wasn’t gonna happen for me like I wasn’t good enough or poetry
wasn’t in that position anymore or something well certainly the culture had
moved on right and it had in some respects probably for that kind of
effect it moved on to rock yeah but we’re telling you by the way
yeah but I have to ask you so many people would be satisfied with poetry
simply as a form of self-expression yeah but if I’m hearing you correctly
self-expression for Steve Silverman’s not enough that’s actually a very
insightful thing thank you yes we’re cares you know that’s great
self-expression who cares I mean we all have selves you know they’re here for a
while they go away you know but you know I the one one of the things that I
inherited from my parents who were by the way communists I know it’s right
right I’m quite a red diaper baby but no pretty much new left red and so you know
the I files yes taking down license-plate number yes yeah my parents
felt that our phone was bugged which it probably was so and my father actually
went to jail for organizing a protest against the Vietnam War he was fired
from several jobs because of his radical politics so I grew up my mother ran for
Congress as an independent candidate so I grew up knowing that the established
order of things the mainstream world was not looking out for my interests you
know I grew up I don’t want to say paranoid but you know I felt that like
the police were not our friends exactly you know and I remember being dragged
through clouds of tear gas with my mother holding her knit hat over my nose
and mouth in Washington DC and seeing billy club wielding policemen coming
down the steps of the Department of Justice novel novelistic Lee enough so
you know I grew up a feeling like we were Outsiders okay yeah so you’re an
outsider yeah and you’re an outsider though at a time when the outside I mean
I say in your own youth young adulthood where the outside had like a pretty
healthy culture going for it so exactly so there was a place to go to be
outside that’s true that’s what I want to take you back so there you are in the
anarchist bookshop reading poetry to fit any of your friends and it’s just not
cutting it for you right right so I wanted I wanted my writing to do
something I wanted it to effect change and I wanted it to somehow make the
world better for people who are suffering I mean it sounds all exalted
down but you know that that’s what I wanted you know and so I started doing
journalism and you know I was writing for the San Francisco Chronicle on paper
are you writing music essays culture yeah but I find culture for it because a
lot of us here at science journalists we haven’t got a clue so well frankly ever
about really you know I was writing like sunday supplement features personal
reflections with blah blah okay but it’s funny I got my first taste of the
ephemerality of Fame one day when I had something on the cover there was a
picture of me and Alan Ginsberg actually on the cover of the sunday magazine and
one day I saw that the cover blowing up the street in the wind but anyway so yes
so I started doing journalism and then what the way that I got into science
journalism was through poetry believe it or not was that I was the personal
assistant at Alan’s request of a relatively obscure but excellent beat
poet named Philip Whalen who appears in Jack Kerouac books and by then he was an
old blind Zen master and so he needed someone to do his correspondence and so
I did that and I and every day he would say stuff about Kerouac or Ginsberg or
whoever that I knew was not in history books because I’d read them all so I
thought like I can’t just let this stuff disappear into the air something had
come along right then that made it very easy to preserve those remarks the
Internet so this was the early 1990s I was in an
online community called the well which many of you know
and so I started a topic about basically stuff that Philip Whalen would say to me
and one of the people who read that topic was a guy named Gary wolf who was
working at he was helping to plan the launch of hot-wired which was wired
magazines website you know websites at that point were so new that I had to
tell my mom no you can’t go to the store and buy a copy I’m sorry you need a
computer you know and so one day Gary invited me down the hot-wired for lunch
I assumed we were gonna have lunch suddenly I’m meeting everybody there and
I said Gary this is really nice but why am i meeting everyone here he said I
want you to be the senior editor of hot-wired just on the basis of my stuff
about Philip Whalen on the well so I did it
and you know I was like the old guy in the office basically almost everybody
there was it was their first job out of college and they were like sleeping
under the desks you know for a second though backed-up give us sickness the
culture for us at this point I mean wired was an incredible publishing
phenomenon when it it word on the scene and there was a whole zeitgeist of the
zeitgeist of the of the web aborning and the idea that journalism could even be
committed in an ethereal form that’s true
inside wired we used to joke wired the magazine for people cooler than you’ll
ever be so you know we in Wired had like this
fierce like almost punk you know but high-gloss panel but you know attitude
people would constantly complain I can’t read those funds right now those colors
you know and we thought it was great you know and so hot-wired was the first
commercial web magazine whatever that is we invented ad banners sorry but here
was the thing for the first time in my life I felt like I was on the leading
edge of something instead of the trailing edge of something like for
people my age I’m very old I’m 57 so for people my age
we grew up through the whole 60s stuff who’s like we’d get to the party just as
everyone had vomited and was leaving and so oh god you know like we were
constantly cleaning up after our slightly older brothers messes you know
and so to be working on the web in 1995 I started working full-time on the web
in August 1995 which I remember because the first piece I ever wrote for Howard
was an obituary for Jerry Garcia actually and it was the first time I
ever felt like I am right at the moment of Inception of something really major
anew like I remember the four you know just a couple years earlier I’d seen my
first hyperlink and clicked it hyperlinks like you know we’re so tired
of them now it’s like we don’t even see them anymore they’re invisible hyperlink
was a magical thing the first time that you ever saw it if you grew up without
that and so and the web was unbelievable and plus I was with people who were so
cool and I don’t mean cool like snobby or hipsters I mean like they were so
creative that they would do stuff put it on the web and within two weeks
everybody would be imitating it so it’s like they came up with like when I first
started working at Howard gray background web pages were the standard
and if anybody remembers that but these kids had figured out how to make colored
backgrounds and you know images in the background and they were hacking stuff
and really it was wonderful right and I’m sitting here with my mouth
open because I have no idea how you fit in oh I was paym you again yeah I mean
you have no discernible technical skills right oh right you have I mean I realize
we’ll get to this later but you have no science background so you’re not like no
you’re not coming out of Stanford with a yeah after that you know degree don’t
know what to do with it but I was fanatically interested in science the
whole time you were I was we’ve missed that yeah okay all right so science
fiction and science you know I was fascinated by science fiction so Islay
know I didn’t have any formal train that’s sorry I was I was always very
interested in anything in particular I mean how does one be science you know
well I mean AIDS was happening I was well okay you know yeah I mean I was
always interested in the space it was was there a particular entry point I
can’t remember yeah some people got jazz because you landed on the moon some
people yeah because their friends were dying I mean it could be both yeah yeah
I mean so in other words I had a healthy lay interest and I don’t want to elevate
it into something it wasn’t I had a healthy lay interest in science at the
same time so wired basically what I started doing was doing Daily News we
launched a web native news service called wired news and there was a what
was news for a wired native well give you an example
Alicia the the first story that I ever wrote that was published for Wired news
was about how a disgruntled gay programmer had inserted gay characters
in a very popular video game at the higher levels so it was like if you got
to the high level it was it was one of the sin games oh okay
so if you got it if you got to a high level suddenly you’d see guys in bikinis
– and it was too late to start to take them out before the games shipped for
Christmas so the company was completely freaking out yes yes yeah exactly
yes exactly are you him you’re not him are you
yeah right all right right so I wrote this story for Wired News and the New
York Times stole it basically like what happened was this reporter called me up
and he said oh great story about you know zoom game you know would you mind
giving me your contact list because we want to write a follow-up well the next
day the story did run on the front page New York Times but there was no somehow
no reference to my story and when I wrote it you know I like I was so
intimidated like I did No if I should even write him and be
pissed off you know but I like wrote him and I was like really
you could intentionally written the story you said my editor took it out so
um so anyway but that was good you know like stealing is the good form of
flattery in journalism sort of so okay yeah you are at Wired you’re writing
you’re out the crest of the wave and you were a feature writer yeah at Wired for
gosh 15 years yeah I got poached by the magazine you got poached by the magazine
yeah so I guess from from my standpoint you’ve like raced up like the ladder of
like interesting journalism jobs I mean critic for the social critic for
the for the San Francisco Chronicle a restaurant reviewer for San Francisco
magazine I’m here I start up editor at hot-wired and then the next thing you
know you’re at Wired and all of us would like to kill you well here’s the thing I
had a lot of ambition like building up in me that I could never express like I
had originally tried to get a job at The Chronicle as a coffee boy like literally
and you know I I couldn’t get that job like every job seemed to be clogged with
baby boomers seriously and so I wanted to do stuff and you know suddenly like
getting on the web somehow enabled me to to do stuff and
engage and to exercise my faculties at large as a poet Charles Olson said I
wanted to have an effect on the world interact with the world I’m kind of
prolific ie I will not bloody shut up you know and so I write a lot and people
seem to like it mostly some people will hate it but yeah
so I’m curious as a working environment yeah you’re talking about a moment when
people are kind of inventing what will now call online journalism oh yes and
wired at a very high order this is not the kind of is a blogger really a
journalist argument or whatever so what I’m curious about is how self-conscious
you all were about what you were doing not us all I was very
very the other the kids who were working in hot-wired who were adorable and you
know like if you know he’s a fine kid here for a moment people so I can tell
just tool in the audience you’re offending okay yes people who just got
out of college you know as I say they were sleeping under desks the really hot
engineers would have hickeys all over their necks in the morning if one person
got a cold everyone got a cold there was like dub reggae you know play
blasting on big speakers you could totally get high on the roof and people
did and including I believe the editor-in-chief at some point of the
website but here’s the thing the thing one thing I forgot to mention which is
very important was that the new journalism of like the Tom Wolfe era
like the electric kool-aid acid test had a huge effect on me like I love that
stuff I thought it was amazing like it was almost like I got a thrill from it
that probably some people get from video games like see seeing words use that way
it felt like very live language and very live reporting now I look back it’s a
little tacky in certain ways but you know but at the time it was like wow
like this is amazing you know and so with the invention of the web and the
launch of hot-wired I felt like oh this is somehow new new journalism which
actually was a phrase that was used and was instantly nauseating but yes it felt
like a new wave in journalism so I was very happy to to be part of that so tell
us a little bit about your work habits I work a lot but you know alright well I
mean the work habits for the book we’re very different we’re going to get into
that I need to kind of do a little groundwork I’ll tell you what let’s use
an example okay let’s talk about the work habits and we’ll use the geek
syndrome over the wired feature that eventually kind of led directly to this
but kind of lit the fuse okay so it’s a classic what 7,000 word yeah
lead feature I guess yeah it was supposed to be the cover but then
well know a little bit about how this came to be so it’s a story about the
apparent rise of wanted story I feel like I’ve told it like 50 interviews no
they’re much too young okay all right all right all right I was on a boat in
Alaska with more than a hundred computer programmers and we were cruising towards
the Arctic Circle the occasion was something called the geek cruise which
was an entrepreneur’s attempt to have tech conferences outside of boring
hotels in Pittsburgh and that was the story you were covering us at first well
right no instant right you weren’t sent there to do a story about autism in
Silicon Valley no I was sent there to do a story about
the geek crew about which is out that story is out there too yeah so so I go
on the geek cruise I know it like it was the first time that I was ever with a
lot of hardcore programmers all at once who were sort of in their own space and
making their own culture and they definitely seemed like I tribe to me
like you know if the word tribe you know they seem like they they got each other
in some way and some of them were very socially awkward some of them were
self-medicating every night in the bar you know they’d have to be carried back
to their stateroom literally but they were fascinating they were brilliant you
know I got to sit at the Wizards table because I was a reporter the wizards who
were these very high-level programmers would have these fascinating
conversations like what do the gliding – I forget was something about the gliding
tones and Cantonese opera why are so many programmers also musicians like it
was a completely fascinating conversation every night Larry wall who
invented one of the most widely used programming languages in the world
something called pearl pearl isn’t everything
it’s an Amazon that’s a Microsoft software it’s in Craigslist the duct
tape of the internet hat pearl hackers call it so larry wall the inventor of
pearl was this very eccentric but very wonderful guy he put like tokine quotes
in the source code you know in all this and so towards the end of the cruise
I asked Larry if I could interview him at home in Silicon Valley and he said
yeah sure by the way we have an autistic daughter and at that point it was the
year 2000 I didn’t know much about autism beyond Rain Man like most people
by the way like it’s it’s actually I really want to make the point that it’s
hard to remember now when autism was not almost a daily topic of conversation in
the year 2000 it was not yet it was becoming one but because those cliches
about autism in Silicon Valley we’re just starting to be minted back then but
I thought autism was that you were doing the minting yeah right I did some
dementing but I thought autism was a very very rare neurological condition
that the chance of me meeting an autistic adult in real life and by the
way I welcome my autistic friends right here tonight who were in this room thank
you yes thank you that the chances of my meeting an autistic person in real life
were very slim you know so he said that I thought okay so I went to his home in
Silicon Valley she was not there I did notice things that would become
significant later which was that he had swapped the buzzer on his clothes dryer
out for a tiny light bulb so instead of going when the cycle is done this little
light would would light up and it was only later that I connected that sensory
sensitivity with his daughter’s autism but he was wonderful guy told me great
stories very essentially rebellious person which I’ve come to actually
believe is interwoven with autism in interesting ways
but anyway so that happened a few months later I was writing another
story it was a profile of an entrepreneur couple in Silicon Valley I
asked the sister-in-law of the woman I was profiling if I could come visit her
in Silicon Valley that family I was writing about the the patriarch of the
family had built the first computer in Israel way back in the 40s or 50s or
whatever so can I come to visit your house and the sister-in-law said yeah
sure I should tell you we have an autistic daughter
and I thought god that’s odd you know two families in Silicon Valley with this
rare neurological condition and so I was telling that exact story in the cafe in
San Francisco and this woman that the next table said oh my god do you realize
what’s going on and I said what’s going on and she said I’m a special education
teacher in Silicon Valley there’s an epidemic of autism in Silicon Valley
something terrible is happening to our children
yeah it’s endemic word right the epidemic word the hairs on the back of
my neck stood I’m in they just did like the power of that remark like still you
know is it really and so my immediate impulse was like I
have to find out if this is bullshit like really like is there is there so
you had gone ahead don’t written these other stories I mean you wrote the night
right I wrote the story I invented Perl you did a story about the person is
right yeah so right you’re you’re these are just kind of the outtakes if you
like yeah they’re just in the back you mind I mean I’m just curious now as you
work do you you like take copious notes do you file stuff for you yeah yeah left
over Yeah right I’m a digital pack rat yeah good and so so I wrote the geek
syndrome looking back like I don’t remember exactly how long I had to write
it one thing I do remember was I used to walk up the hill to UCSF which has one
of the best medical libraries in the country so there were all these journals
and so I was researching epidemiology genetics you know environmental toxins
people were already very much talking about vaccines because Andrew Wakefield
had already had his you know infamous press conference it’s a journalist
you’re coming to this new you’re not like right no I’m well schooled in
epidemiology no no you’re not going to fool me with the cancer cluster right
exactly right here’s the thing if I have a method it’s to over-prepare I read so
much more like I do really I must say I read really a lot because I don’t want
to look like a fool I hate reading news stories where you
say like well really like you know if you really know about the subject the
story isn’t you know lame or whatever like I hate that feeling and I never
want it attached to my byline you know I want people to say hmm you know like
like even people in the field I want them to learn from what I write so so I
over prepared for geek syndrome and there was an idea that was being
introduced simultaneously by Simon baron-cohen in England and the guy who
told me a geneticist who’s now at UCLA named an Geschwind but what was
happening in Silicon Valley was called assorted of mating sort of mating is
when two people who are carrying genes based I mean I’m oversimplifying but two
people are carrying genes for a certain set of traits if they get together and
have a kid those traits will be concentrated and so the theory was that
high tech communities were creating social opportunities for people on the
spectrum you know who maybe not were diagnoseable that had autistic traits
and one thing I picked up on back then was that a lot of parents were figuring
out that they were autistic once their kids were diagnosed like that was that
was kind of a new thing because actually the diagnosis had I didn’t realize until
I wrote gig syndrome I didn’t realize how recently the diagnosis had become
available to adults like the net like here’s the thing we look back at Rain
Man and like young autism advocates to look back at Raymond and they say such a
cliche you know the the autistic savant it was not a cliche at the time to see
an autistic adult on screen was huge at that point it was completely
revolutionary and it was the first autistic adult that almost anyone had
ever seen including even people in the autism community actually they still
thought of autism as a childhood disorder so so basically I forget where
I was going I know I’m gonna play back so you’re you’re you’re working on this
story and alright okay sorta part you’ve got you’ve got
two cases where and of course everybody knows a journalist needs three well I
make more them to make a trend right you know alright well I talk to a lot of
kids and a lot of family but so that’s what I want to know so like you’re about
to kind of diagnose a community oh so I’m let me know on what basis do you do
that well I was not diagnosing it I wouldn’t go so far
yeah maybe diagnosing them as having traits I mean I’m still pretty much of a
stickler about that like people problem like Temple Grandin says you know
everybody I meet in Silicon Valley has autism you know not really yeah but
we’re still back in right right wall right right terminology is evolved
correctness is evolved right since the neuro diversity has dissolved exactly
but at this point one of the reasons that your story made the splash that it
did was because you were kind of writing the scarlet a on a on a hole oh I don’t
think it came across as a condemnation no no but people take it up and they
they run with it right and it is true I have to say that one of the interesting
negative reactions to my work from the anti-vaccine community is that people
say that because I say that autism is primarily genetic which is mainstream
science at this point they say I’m blaming parents which is really
interesting psychological trip that comes out of the long and torturous
history of being autism parents which I wrote about but no I’m gonna pull you
back again they want to keep you on unworking okay so our limit so alright
so the story comes out it’s great it makes a splash it spawns a lot of
follow-ups by other people other people copy it in their own way it sets a kind
of new Silicon Valley cliche I mean that right good way
cliche cliche was also coming out in micro serves yeah widely shared half
truth right you know right right exactly right so for you okay the work is done
the stories run but what happened to something next and
I went on to something next but what happened was you know I kept getting
email about that article for years and years and years and the email was very
heartfelt and it was like you know I recognized that I was autistic from
reading that article I mean like many many many people I mean I was getting
email about that article for at least 10 years and I mean like still like at
least every month often every week and so and at the time a lot of people told
me you should write a book about autism but I just I didn’t feel like it was
right like I I felt like it was too early and in fact I have to say when I
started when I wrote the cot when I wrote the proposal which was endless for
it was 108 page proposal right it’s true yeah when I wrote the proposal for this
I still wondered if it was too early yet you opened a file oh yes I did very
important and you called it neuro diversity
yes new diversity book yeah that’s true anyways right it’s my hand a little bit
actually started putting things in the file I did know I I did that you know
what the article came out I get this email people are telling me I should
write a book so I said ok maybe I will eventually
write a book so I started salting away news stories about autism basically no
matter what they were about like if I thought unless I thought it was total BS
of which there was a lot you know I would put interesting articles about
autism or artistic people into this file and by the time I wrote the proposal it
was an enormous file I haven’t looked at it lately but you know gigs like really
a lot of information and and I also hit yes I said like file cabinets of stuff
so I’m curious though many people are fair number of people are are lucky
enough to write a story that generates some interest get some buzz whatever but
you know the idea was enough for the assignment and that’s right sometimes
and this is why I’m curious about you in your file in this long ten years we’re
doing other things right this idea seemed to I don’t know
stick to your trouser leg I mean kind of like yeah there’s seeds what what is it
about it at that point that’s resonating for you I mean you seem to kind of not
let it go right well here is the thing I was getting emails from autistic people
in their families that were describing basically the challenges that they face
in day-to-day life we have to sue sue our local school board I can’t find a
job like these were really real day-to-day struggles and in part because
of my parents communism uh you know I’m always like
listening for the voice of the underdog or maybe that’s also just the journalist
in me or whatever I was like wow these people are really suffering meanwhile
the whole world was talking about autism kind of what they were doing was arguing
about vaccines so it was like whenever there was a
story in the news about autism no matter what it was about if you looked in the
comment thread it was you know either you know vaccines cause autism or you’re
a shill for big pharma or you know basically every internet common thread
about autism for years would devolve into an argument about vaccines and I
thought there’s something wrong here like it was just a sense that autistic
people and their families were dealing with a daily reality that was not being
addressed by this arguing about vaccines like went like what do people do about
autism before there was this big argument about vaccines and that’s one
of the things that I found out for this book and answer and what they were doing
was they were trying to change the world to make it a better place for autistic
people by changing laws and improving access to education that’s what the
autism parenting movement used to be about when it started and somehow once
the vaccine thing came along a lot of the energy of the autism parenting
movement went into fighting this conspiracy about vaccines and that’s
actually one of the you know sort of the great tragedies that I
in the book because you know it’s sort of proves to be a day there and I
actually saw a sorry I’m gonna go for one more time okay I actually saw a
column on an infamous anti vaccine website that was arguing against making
quiet rooms and libraries for autistic kids because it normalized autism
instead of fighting the vaccine conspiracy and I felt like really you’re
against quiet rooms you know and plus they’re also against autistic Muppets
because that’s also you know normalizing autism is like really so I felt that
there was this huge disconnect not only that but from from writing geek syndrome
I had a feeling that there was something wrong with the standard version of
autism history and it was no more specific than that I just felt like
there’s something not right about this it was like a gut feeling and it really
was like I had no basis for it I just felt like there’s something funny about
this story like it’s not and so this book actually discovers what was wrong
with the least bit embarrassed about I know I should be so this business of the
of the disconnect I totally agree with you Stephen that is always a rich area
for journalism the disconnection between what the world perceives and what you
with your special knowledge about what’s really happening see that totally
resonates for me it’s consistent with my own book writing experience so are
really long proposals which we shouldn’t talk about the problem is is is that
it’s it’s really hard not to feel captured you know not to feel sort of so
not not to sort of adopt the community that you know so well yeah and and it’s
really really difficult to sort of walk that difficult
of sort of sharing your deep understanding of what’s really going on
without losing your ability to do independent analysis and I’ve got to
believe that that’s been really difficult for you so how how tell us I
can’t come to you with a success story of staying fully objective yeah
objective is a silly word okay I don’t think that’s the right approach but but
independent is a good word is a good word yeah so how have you managed that
tell us some stories about that yeah and how has that manifested itself and how
have you dealt with it well you know one of the problems with autism is that
there are various constituencies within the world of autism that are all
basically at each other’s throats practically and I’m not someone who
thrives on discord you know I mean I’m interested in discord but when people
are being angry at each other all the time
it wears on me and so there’s so much anger among autism parents among
autistic people and you know everybody feels like they’ve been lied to at some
level and the truth is they have actually I mean I hope I figured out
some of the lies and set them straight but there is anyone who is any personal
connection on autism can attest it is tough out there man it’s really like you
get so much fire it’s like you know you get fired from here like you expect the
fire from this direction and then you get fire from the you know people you
thought were your allies or whatever and so basically everybody on the front
lines of autism is burned-out no matter who they are you know and if you you
know if you speak it it really is true it’s like I’m it’s a major issue it’s
horrible and it’s draining so much energy like I have seen so many really
good people who had really excellent blogs like about
autism science a river they can’t take it anymore
they can’t take being hated so much anymore you know and it’s really
difficult yes sorry microphone sorry one of the other things it’s really
interesting to consider is that when you when you take into account the
percentage of the autistic population that has executive dysfunction so people
who require a phone to remember what time it is and whether they should dress
in a t-shirt or a jacket today or is it Tuesday and is this New York and yet
because it’s on us to to advocate for ourselves we’re having to to deal with
that quagmire on top of the fact that everybody wants to pathologize well not
everybody but many people want to pathologize us right and and furthermore
there’s there’s infighting in the community itself
yeah parents don’t want to hear from us yeah III admire the self-advocate
community so much because somehow through all of that through the chronic
illness through everything else they somehow managed to keep pushing the
envelope yep absolutely let me just broaden that for a second
and then we’ll come to you I I wonder there are a number of areas now that
science journalists medical writers confront as matters of coverage
you’ve describing the very choppy waters of the autism conversation and I want to
get back to the science communication issues for a minute but certainly you
know if you stick your head up one way or the other and coverage of genetically
modified organisms or climate and climate change yeah you what you will
lose body parts right and so I wonder in your case if I can just kind of bring
it up a bit how do you persist how do you armored yourself I’m still figuring
that out because it’s still happening you know it’s like some of the email I
get this pretty intense I have to say but I’ll be blunt while I was writing
this book I was waking up at 3:00 in the morning with panic attacks on a regular
basis I never got panic attacks before I would wake up like I thought of myself
as a pretty mellow guy I meditate you know you know I was waking up like every
night in a cold sweat like you know my husband had to wash the pillowcase more
because I would have so you know I was terrified that no matter what I did
everyone would hate this book no matter what I did the parents would hate it the
autistic people would hate it you know that everyone I was talking to and was
earning the trust of would hate it you know like everybody would feel betrayed
I was absolutely certain of that practically and so it was like it was
almost like driving into a brick wall in fact I used to think of that there’s a
brick wall about 50 miles up the road I’m driving right towards it you know
and as the as the writing process went on and on as my editor you know I felt
like I was hit headed off a cliff for a certain disaster and when and when it
was she was the first person to read it i yeah like I’m supposed to say my
husband read every chapter no he didn’t you know he doesn’t care I mean he reads
the stuff later but when she read the few chapters in liked it was like she
was the first person to a read it and be like it I was like so I cried when I got
a text message yeah yeah hi my name is Dena Kasner and I’m an autistic and I am
the parent of a 26 year old and I’m also a PhD student at Adelphi and so speaking
out of the school of social work I wanted to just express that there is a
movement in academia for to bring down that wall of proposed
objectivity that we going back to standpoint theory and feminist theory
that the person who has the voice is the privileged voice and I think the reason
the book worked and the reason we’re seeing a shift in the whole research
community and autism is because we’re finally seeing autistic researchers and
we are using our voices to inform our research as compared to trying to
maintain this objectivity that denies that in intense need to connect with
this misunderstood community and that’s what Steve has done by engaging with us
instead of studying us and that’s why I think people are respecting his work but
I also think that we’re going to see a wave of autistic researchers there’s a
team of four of us that are going to be presenting at M far this year to say we
need the qualitative experience to inform this research because there’s too
big of a void between the research bench and the people who are living this life
every day that’s true and I recently was in England and met the head of autistic
ax which is a major research organization I talked to him for half an
hour oh yeah cool and I’ll confess when I was talking to him I thought oh it’s
some neurotypical guy he’s you know heading up this he’s autistic his
parents were told that you should be in an institution when he was young and yes
that is changing she said something very interesting yet I want to linger on for
yes she said engaged yeah other than study yeah now as journalists yeah you
know engaged rather than study you know it can maybe pose a dilemma you know
over yeah I’m gonna lose herself a little bit cloud our bit I mean how do
you how do you first of all just how do you feel about that I mean engaged
rather than study well and his study for us than a form of self-deception well a
form of distancing I’ll tell you the moment that I
started engaging you could say one of the first things that I did to research
the book was to go to an autistic retreat called outreach which was about
70 people on the spectrum of all ages and at all points on the spectrum except
it’s the spectrum is not linear I don’t like to say points but you know all
different kinds of people really different from each other some people
couldn’t talk some people only said one thing the whole week so there I was I
was one of the very few neurotypical people there I had to come out as
neurotypical at some moment it was a trip I hadn’t felt so anxious like since
I was in high school coming out as gay it was like oh are they gonna figure it
out you know I also had a very interesting moment when I got to the
desk to register which was the young you know the student behind the desk
handling the registration was talking to me in baby voice like oh hi you go over
there and you get your room is like God like you know like is she talking to
everybody this way she probably was you know so so anyway so there I was at
Autry and a number of marvelous things happen like there was a guy I talked to
the night before the following morning I saw him in the cafeteria I said hey man
how’d you sleep and he said why I realized like oh my god I put so much
energy into trying to be charming like you know it was like by the end of
archery I practically have never been more relaxed another thing is that I
don’t know if you’ve noticed but I’m overweight and you know nobody cared at
Audrey or maybe they care I don’t know but it was like every but you know
people are flapping their hands over their you know they’re rocking back and
forth over there it’s like people are not like walking around like okay is
everybody like hip enough to be here like you know it wasn’t like that it was
that one of the most right exactly right excellent excellent
social nudists can yeah that’s excellent so it was one of the most liberating
environments ever but here’s sorry I’ll get back to the work yeah here’s the
deal when I went back to work on my proposal after that there I am writing
about you know autistic people are like this and they’re like that and they’re
you know have trouble parsing humor what like you know at some point I realized
like all of this inherited language and my head was full of inherited language
like when I spoke it was all this propaganda actually clinical
descriptions from him you know case histories or whatever coming out of my
mouth it’s like wait a minute stop that I was just with those people they’re not
like that you know and I mean they are like something but they’re not like that
you know and so that was the moment when I said I have got to find fresh language
to describe autistic people and here’s the thing the editorial decision that I
made that I most feared my editor would say are you out of your bloody mind was
opening the book with a description of henry cavendish in the 18th century
because i what I thought my Italy yeah and I thought my editor would say you’ve
got to start with a mom who do you think is gonna be reading this book you know
okay so we need a reality check so nobody’s here I would like to just and
then we’ll get back like I promised okay reality check vegan right hey Joe Egan
Newman so the 108 page proposal Oh God lands on your desk
wait and I’m just curious you deal with a lot of different kinds of writers I’ve
talked to you a little bit you’re a patient person 108 pages oh my god I
don’t even remember that quite frankly because it’s not like I never see a
hundred and eight age proposals and Steve first I mean the
information is interesting I’ve always been interested as is it on with second
yeah yeah one of the commenter people you know the pathologizing of human
behavior is something that has always interested me and you know what Steve
touched on in his proposal was about that
you know very topic in addition to what is autism but quite frankly between the
delivery of the proposal to my first reading of the manuscript years had
passed share with us how many years five yes yeah yeah he had promised to
actually promised I say this kind of the contractual meaning he had promised to
deliver this I’m guessing eighteen months eighteen yes and which I
thought was bird which I thought was very generous at the time and let me let
me cop to this I’m a journalist I’m used to deadlines I used to be really good at
making deadlines so when the deadline was coming up for Meighan I wanted to
kill myself I’m halfway through the first chapter in my first deadline is
coming you know really I felt ashamed so so five years I think five years is
pretty short just remind some of us how long you worked on Toms River I don’t
have enough fingers yeah how long did you work on it actually I’m really
curious I think it’s evidence that what takes
time is worthwhile so but I’d like to thank you for your patience and come
back to your question thank you hi my name is Brian Kinghorn I’m a grad
student at Columbia University I am on the spectrum myself getting interested
in advocating for neurodiversity if I had to start all pilot group
they’re homies grad school of education looking at from learning perspective I
have a lot of friends colleagues are clinical psychologists and like they’re
really getting into it so special out in the you know getting tired of seeing how
things are pathologized so it’s interesting perspective I did a TEDx
talk myself and read stuff I Steve is very much an influence on me one thing
that keeps coming back to my mind though is this a lot of the panic about calling
it an epidemic and how some of the figures like no Connor started with like
was afford a thousand or something that low we didn’t even come up with that
number do you just kind of well no well no Connor yeah what Leo Connor was the
guy who took the credit for discovering autism in 1943 the the 4.5 and 10,000
estimate of autism prevalence which is the bottom of the hockey stick graph and
all the fear-mongering memes on Facebook that was extrapolated from Conners
criteria by the first autism prevalence studies which by the way we’re not done
until the late 1960s early 1970s so three decades had gone by before
anybody did a basic study of autism prevalence guess what nobody’s done a
study of prevalence among adults in the United States
somebody did in the United Kingdom however guess what the proportion of
autistic adults both diagnosed and undiagnosed in the community is exactly
the same as the proportion of estimated among children which would seem to
suggest that there is no tsunami of autism but I’d like to add a note to
that because of my field of statistics and I have looked at the numbers from
the CDC did a linear regression analysis on it just popped it in thought I could
put it like I was one in two hundred and one in 100 one in 88 and you know it
sounds big you know when you look at those numbers but just plop into your
calendar because a calculator sorry and we’re looking at numbers that are
slightly less than one percent due to the current figures like one point forty
seven percent and when I just ran it through if you actually the dots it’s a
very slow very not so steep linear line it’s at 0.08 percent as a refraction
percent per year meaning we’ll be out like one point 55% 1.63 it is very small
is very slow I mean that’s smaller than most of minorities pay based off of race
ethnicity sexual orientation I mean the way they put it until you actually look
at the numbers it’s you know very slight thing but I don’t know anyone who you
know I was really bothered to do anything like that there was someone MIT
I forget the name who try to make the scare article that like oh like 50% of
our children don’t be autistic well Kourt my calculations that’ll take
600 years one of the strong threads that I’m hearing it from you this evening
yeah because you you you actually emotionally you keep going back to this
you sort of approached this it seems to me very much as a reformer and a
reformer in the sense of I want to set the record straight yes there’s one of
the things I think is interesting about this book there are a lot of books about
autism there are a lot of books generally it’s a kind of thing that we
do books about people who are afflicted with something and the search to fix it
you know often usually figures not the person who was afflicted with something
but features the brave smart articulate quotable scientist who was going to you
know cure this is right you made a decision here to decide if this is a
book as much as anything about history that’s true and that’s because I came to
feel that the people who were really afflicted were everyone like parents
were afflicted with fear of vaccines because they did not understand that
what had happened the real story I mean I felt like I was
really trying to lift this or relieve this fear and the problem is that
particularly in America in England they don’t do this autism parenting
organisations glommed on to the word epidemic like autism Speaks glommed on
to the word epidemic because autism parenting organizations were so used to
being ignored and overlooked because autism was mistakenly believed to be so
rare so it’s like epidemic gets everyone’s attention
so like they went for it but they don’t realize that when they use the word
epidemic it’s not just some neutral word or it’s not some word that says there
are many more artistic people out there than you thought in fact it says what it
quietly says is there are no autistic adults
actually because it’s a tsunami of children you know it renders autistic
adults invisible and once I figured out that many people who were adults in the
40s 50s and 60s either had no diagnosis at all and were struggling to get by and
couldn’t figure out why they couldn’t make jobs work and whatever or they were
in institutions because they had spent their lives there because they were put
there as children now when I hear like tsunami of children what about the
adults who you’re rendering invisible twice you know really anyway yes hi I’m
Carol greenberg I’m an autistic mother of an autistic child and also former
editor of both newspapers and over a hundred science fiction books and I just
wanted to go back to the comment about deadlines and everything the whole
deadlines structure in journalism in in books and magazines and newspapers it’s
quite different I know that as a book editor Steve I’m sure needed to have
negotiations a good faith with this editor about when to deliver various
things but it really isn’t like newspaper and magazine deadlines where
it’s drop dead has to be there by Tuesday is a different thing and I just
I just wanted to make that point to you that I don’t think I think there were
some negotiations going on in good faith between editor and writer that were
perfectly normal for book publishing tell you that one of the I’ve written a
book and one of the abiding regrets that I have when I look back on it is that I
actually delivered it when I was supposed to that’s interesting oh can I
say one more thing this because I think this is an interesting thing please the
other thing that was weird about writing this book was that I started writing it
right when Twitter was really take and and so the whole world was getting
fascinated with fast writing you can’t get faster writing than Twitter and you
know short form journalism and etc suddenly I was doing this thing that
felt almost medieval you know I’m like working on this manuscript for five
years like it seemed insane like I was completely swimming against the tide you
know and that’s one of the reasons why I got on Twitter like so aggressively was
to keep my name in the news because I was used to I was used to you know
writing a story that oh the placebo problem you know everybody would talk
about it for three days you know and so I got addicted to that endorphin rush of
being part of the global conversation and then suddenly I was not you know for
years and so I thought I have gotta keep my name out there somewhere or people
I’ll fall off the edge of the earth and it also had to do with being as old as I
am you know it was sort of like the kids are gonna forget about me you know it’s
really true so I’m interested because you’ve very successful as a tweeter how
however you want to calculate that yeah so did you go into that I understand the
impulse to kind of I need to keep my name yeah lives very important to a
journal that’s very important to someone for whom self expressions not enough did
you go into tweeting good you go into social media with a professional
strategy or is it just what your fingers do at the end of the day when you’re
tired and distracted and probably indiscreet you know I was lonely like
like you know I do not have the story about how I wrote this book and I was on
the treadmill every day and then I went and had a charming dinner with my
friends I was living like a miserable monk I’ll tell you a quick story my
watch kept stopping while I was writing my book and so I go out to the store
look for a battery they don’t have a a go to five watch stores on Market Street
in San Francisco nobody has better finally at the last one I say to
the guy wait a minute this is a Seiko watch it’s not obscure brand why doesn’t
anyone have a battery for this watch and he said no one has a battery for that
watch because it doesn’t use a battery the solar watch you know so I was
basically at my desk like Meegan doesn’t even really know this but I was
basically at my desk from 3 or 4 in the morning until 11:00 at night every day
Wow I did not take 2 consecutive days off for years my husband can tell you
you know I became that that ghoul in the bathroom oh you know like never left his
desk you know and it’s because I’m so picky about my sentences really it is
you know I wrote some of the sentences in that book particularly in early
chapters I’ll say 500 times you know just trying to get it right and that
probably comes my poetry background actually I just want to make sure that
everybody in the room is studying journalism listen to those last couple
of sentences because they’re really really important sentences you must
labor over your work you really must if you care about your work you have to
labor over it and even to the point of weird obsession it’s it means something
to do that it really does and it’s not necessary or help right Steve’s agent
has spoken and would like it if the manuscript was delivered a little
earlier and the checks were cut a little earlier well actually I mean it would be
interesting to have a discussion about that but but you know different authors
have different approaches I my approach is very similar to Steve’s and I know a
lot of writers whose approaches are very similar Steve and that is you just keep
staring and staring and staring at the sentence
until you just give up and but it takes a long time before if you’re stubborn
enough it takes a long time before you give up yeah do you read out loud do you
read your stuff eventually as part of the rewriting thing yeah oh yeah bring
it out on paper stuff reading it in strange places yeah oh yeah pretty
different fonts crowded cafes yeah you know like as if I have barely time to
read this what is this oh you know like to see if it catches my attention yeah
writing is rewriting yeah absolutely oh yeah which question has two
microphones there we go hi Steve Hey I mean I’ve been hearing about you
writing this book for like five years back and forth and I think one thing I
would like to hear about is the fact that it seems like the topic was so it
was like a moving target I mean like you dealt with five years of the vaccination
talks you dealt with you know growing amounts of research it felt like when we
heard about the book in 2010 what came out now which is a fantastic read is
much different than what was initially proposed and I and when you talk about
this sort of like old old form journalism where you took five years to
work on it the project management I kind of just want to hear about how you what
you started with and how you got to where you are now and how you dealt with
such you know the quick movement of the subject I actually pretty early on
figured out that I was not going to be able to keep up with the state of the
art of autism research and that proved to be like the biggest gift that I ever
gave myself so for instance during that time period the whole mirror-neuron
thing just came and went huh it’s like you know so you had you know even I mean
like people writing autobiographies I’m I lack mirror neurons you know actually
like no you know like mirror neurons was overhyped and one of the things that I
noticed was that once I got deep enough into autism history virtually every
autism story that came down the pipe was and some version of some earlier
autism’s that had come and gone so I was not
chasing the state-of-the-art of the research particularly once I figured out
that the nut of what I wanted to write about was the deep history and I’ll tell
you an interesting story I don’t think he’s here but one of the smartest
editors in in New York looked at my proposal and he said I’m very interested
in this but forget about the history I don’t want to read about autism history
I want you to write about the idea of neuro diversity and believe me I respect
this guy he’s a fantastic editor but I knew that that was wrong I knew that I
had to in order to write about neuro diversity I would have to go into the
deep history and thank God I mean that’s what the book is you know without the
history it wouldn’t be anything it would be another you know one of these thin
idea appetizer books you know maybe get a TED talk out of it but who cares you
know anyway so I have a question my name is Ryan what I wanted to know was so I
as a neurotypical person you kind of you know dived into this world that you know
was kind of foreign to you so what advice you have for other neurotypical
people on sort of how to help make the world you know a better place for
neurodiversity and you know just advice for kind of I mean the majority of
neurotypical people well yeah that’s it that is it that’s it ya know I mean
eventually I realized that the whole world was having a conversation about
autistic people behind their backs and so
Yeah right exactly s exactly and so you know I would talk to people you know
it’s the best way to listen also well well the other thing too the other thing
that I’ve tried to do secretly my secret plot to take over the world
is to when when people call me for the hot take on autism story I say you
should also talk to autistic adults and and so there are many more autistic
adults appearing in news stories now which is a very good thing and some of
them are even writing those news stories like Dylan Matthews at Fox he’s awesome
and he’s an autistic reporter Mike elk an autistic labor reporter so yeah I
mean that’s that’s really important but mostly I just tried to listen like would
you you know let’s put it this way I was in the awkward and somehow terrible
position of like okay I’m gay what if his street reporter was like trying to
write the history of gayness sure you know it’s like no he should probably
listen to the gay people so certainly the gay community has in your lifetime
in my lifetime had the experience of going from a diagnostic category to
being you know a normal member of the married human tribe so I’m curious as
you were either in your reporting broadly or as you were working on this
project how does your sensibility as a gay man inform this sense of exclusion
and diversity there are inevitable parallels even though it is a very
imperfect metaphor check it out there are basically three writers who
are pretty well known for portraying autistic people three neurotypical
writers inhumane terms one of them is Oliver Sacks
my dear departed friend one of them is Andrew Solomon one of them is me what do
we all have in common that’s why I was asking the question yeah
all gay that’s why it’s no accident and I think it’s because we all know what
it’s like to be marginalized to be hella bullied you know I was beaten up like
almost every day in like seventh grade and so we know what it’s like to be you
know on the outside it to be bullied and stuff and also to be pathologized you
know I my my wet you know my marriage was in the DSM you know until I took 74
boy you know the the condition my condition but it’s also an imperfect
metaphor because you know homosexuality you know there’s nothing like the
executive dysfunction and stuff oh I did that wasn’t that way I just meant that
sense of Arc yeah yeah definitely no I think that when I started talking to
autistic advocates that I had the same feeling that I had talking to gay
liberation as’ you know when I was like they’re refusing to be defined by other
people sure but I actually think this this might follow up on what you just
said it’s kind of the mirror image of Dan’s question which is getting avoid
avoiding being captured by a particular sort of interest group though that’s a
pejorative term okay but there’s a flipside that we as journalists often
run into especially science journalists I think which is you you’re coming with
news of that most people don’t know and you need to tell them but they have
their preconceptions and you have to fight those and that sort of you know
that’s that’s you know I think you you worry about getting captured by
particular sort of small groups but you also have to worry about when your
editor or or your readers say I want this to be like what I’ve read before
yeah so I just wonder in the course of your you know that that’s our job to is
to say this is not what you are used to reading and don’t give up reading I just
wonder how it like was that part of your thought process right in
the book and how did you kind of negotiate that so much so the in the
introduction I slaved over I rewrote it a million times and it was because when
do I introduce certain ideas without pissing almost everybody off you know
like at one point I had the vaccine stuff in the introduction you know I had
Andrew Wakefield in the introduction but I thought like it was actually really
important I still believe this is like completely
quixotic hope but I still believe that parents were absolutely convinced that
vaccines made their kids autistic should read this book because if that’s true
then that’s happening on top of this thing this thing is the subject of this
book so the real reason for the huge surge of diagnosis in the 90s is in this
book and so if you’re really serious about vaccines or other environmental
factors you have to subtract what’s in this book and then look at that and
you’ll look at it more clearly sequencing was all about I was obsessed
with when would I introduce certain ideas or characters and here was the
great thing about starting with Henry Cavendish
was that it allowed me to I’m actually getting back to something I started
writing right yeah it allowed me to talk about an autistic person’s behavior
before all the clinical cliches had crystallized around them so I could see
them through fresh eyes as his as Henry Cavendish as peers would have seen him
which was to not understand why he was doing this weird shit at all but because
there was no structure to explain it you know but it allowed me to look in an
artistic person without any cliches because they hadn’t been invented yet so
I came to feel that that was like I was so glad vegan thank you that you were
willing to go with that because I thought it was really important mmm I
recommend a book for you to put Cavendish into some context proper
context in which I don’t think that you’re wrong about him but
I also think that the English at that period had a much greater tolerance and
a greater appreciation for ranges of behavior I think there’s a wonderful
book by Dame Edith Sitwell called English eccentrics which oh catalogs a
history Cavendish’s in it oh but in any event so to follow up on that though how
do you couch an argument as narrative well it’s like the big Zen koan that
we’re all here to solve you know let’s put it this way I’m very into that like
I’m not into just telling the reader what to think I’m into showing the
reader people’s lives and then they figure it out
basically we hope that’s one of the reasons why the book is so long like you
know I will say that there are various subspecies of criticism of the book one
of the interesting species of criticism from autistic readers is that this one
guy Tyler Cowen who hated the book or whatever he said for a book about autism
it’s sure full of neurotypical bla bla bla where’s the facts man you know and I’m a
narrative writer I love telling stories I’m a narrative guy I think in terms of
stories and so I tried to write a oh okay well this is getting back to that
notion of a disconnect I felt that what was needed to heal the world
tikkun olam of your Jewish was a story that no one had ever heard the real
story of autism before no one had ever found it and that if I could write the
right story it might heal the world like I know that sounds really exalted but
you know we all think things like that like in the you know
you know and so that’s that’s what that’s what I tried to do but it was
gonna be a story it wasn’t gonna be bullet points or a PowerPoint
presentation it was gonna be a story because I love telling stories and you
know I have there are all kinds of meta things that I have in the book and one
of them is like people keep getting obsessed with autism and you know they
just disappear down that rabbit hole and I that happened to me and I came up with
a story and halfway through I thought oh my god I have to finish this book so
that no one ever has to read these bloody papers again yeah say that I know
there are a number of people who ask questions already that have additional
questions and/or comments that’s great but before we get to those I just want
to make sure that people who haven’t asked questions yet get an opportunity
and then we’ll go on from there here’s one in the back thank you thank you
Steve so I’m a dad of a 16 year old on the autism spectrum I’m also the uncle
of two children who are also nonverbal autistics
but my son is very social very communicative and also technically I am
still in the closet on the spectrum I guess except for this room and one of
the things I have to ask you when I’ve I’m almost done reading your book and
I’m amazed by how authentic your narrative seems to be and I’d like to
know about your process in terms of how you create these stories that range from
the Nazi extermination of children that blueprint to the Holocaust which really
got to me to Bruno Bettelheim deceit counters seduction by the cult of
personality and all of the all of these anecdotes and each of them which could
make turn into a dramatic movie I would think but I’m very interested in how you
do this thing that you’ve done which is eventually leading to wrenching our guts
to see the authentic empathy for what we’re read
it’s really quite remarkable I’m almost done with the book and I almost feel
like it’s taken a lot from me but I wouldn’t mind if the book kept kept
going to be honest well thank you so much I mean I don’t know I mean I am
interested to how people become themselves
that’s my meta subject how do people triumph over there the things that
prevent them from becoming who they really are
that’s my meta theme through all my writing in a funny way and so people you
know a couple of times during this whole media circus people have said he was a
technology writer no I was never a technology writer I was always writing
about human beings and how they and how they self individuate or whatever and so
what I do is you know tell the Baxter like Connor would not have made the
decisions that he made to limit the autism diagnosis so strictly and
artificially narrowly if it wasn’t for all the experiences that he’d had that
led up to that and like check this out those the little things can have huge
effects later it’s like the butterfly effect or whatever the first paper that
leo connor ever wrote was a paper ever got published in english was a paper
about a Native American with untreated syphilis and he he framed it as this is
an incredibly rare case that calls out for explanation he uses almost exactly
the same words to describe autism you know this heretofore unreported
condition which makes the anti-vaccine people think that autism didn’t happen
in the world until the early 1930s when certain mercury-containing pesticides
etc you know so it’s like Connor learned a lesson they could really attract the
attention of his colleagues by saying this is super rare case was it so where
well you know I ended up looking at a the conference proceedings about the
syphilis conference you know about 20 before they actually you know somebody
was saying the preponderance of syphilis above my Native American patients you
know was truly you know astounding or whatever so it’s like it wasn’t that it
was such a rare case it was the Native Americans didn’t have access to health
care and Lee O’Connor did not notice that or chose to ignore it and so you
know people say the beginning of Lee O’Connor’s landmark paper is since 1938
there have come to our attention everybody thinks wow it didn’t exist
before no if you look in Connors own textbook he describes kids who were
probably autistic but he just didn’t it hadn’t crystallized the diagnosis and
that ended up having a huge effect on the world because people are still
arguing about vaccines and because they thought it was rare because of what
Connor said yeah so he told the wrong story he told me one question here yes
I’d like to kind of go back to something you touched on earlier writing as a
journalist independently but also with empathy if if that would be how you
would describe it and how you find that space of what your relationship is to
the people that you write about and how you build that to be to do your work as
a journalist but also respect the people that you come into contact with well I
try to respect the people that I’m writing it down I mean yeah I’m just I’m
kind of I’m kind of a teddy bear in some ways which is a weakness you know in
some ways but yeah I mean I don’t I don’t have anything more sophisticated
about that than that it’s just who I am sort of yeah follow up on what Ellie’s
saying is it’s it’s really tough I have the phrase that I use is not as
imperfect and it’s I I think of it as as empathetic skepticism you know yes yeah
you know yeah I don’t know but but people have a problem with skepticism
because it sort of implies that your first instinct is disbelief
I wonder how you feel about that in your hmm I don’t really know what to say
about that yes I mean I in that sense I’ve retained my my
independence from the subject in that for a while I’ll admit that you know
when I would read writings by autistic self advocates be like wow this is
amazing you know at some point I started
applying skepticism to those writings – dare I say you know sorry
oh but you know I no longer believed everything that autistic self advocates
said you know so like if they would attack Temple Grandin say you know I
would recognize that that was something coming from youth really from young
radicals who would would trash a previous generation of radicals for not
being radical enough without knowing how much they’d suffered and you know had
been victorious and getting to that point I had seen that happen within gay
movement as well you know mm-hmm Steve I loved the book and you’ve done a
great service to the autistic community and to the autism community by writing
it I’m Michael Wilcox I’m autistic I’m
probably autistic I knew nothing about autism 12 years ago and a little bit
after that I figured out that I’m autistic got it verified with a with a
clinical diagnosis when I was 60 years old that was 10 years ago
hmm so most of my life being autistic without realizing it sort of sort of
like their junk you know that play anyway my observation comes from – your
conversation about the connection not did it help you understand autistic
struggles by by your experience of being gay and the answer was of course yes and
what it called to mind for me was when I was young in a teenager and in my 20s I
was very involved in a civil rights movement and one thing that I noticed
was that all the white people who were helping out in that struggle most of
them seemed to be Jewish yeah and I thought later I later thought you know
or recently actually that makes sense now because here’s another oppressed
minority right who understood what it was like to deal with with exclusion and
segregation and all that a different experience of Morris but you can
empathize with that yeah and so I think my observation is that autistic people
have a highly developed sense of social justice very yes innate or comes from
this kind of trauma that we go through but I’m just my question from you Steve
is have you you have any other observations about generalizations you
can make about autistic people that that you have obviously become fond of us and
we’d like some praise about things that we do well or what you know you know I
have to say unfortunately that sense of social justice is really it should be in
the DSM does she have a strongly developed
observer you know it’s it’s practically diagnostic and it comes up everywhere in
in artistic culture and artistic people I would say are offended by injustice
and it really bothers them neurotypical people it’s like well he had good
intentions didn’t he you know and that’s beautiful and frightening because there
there is a slightly merciless quality to it but it’s in the service of mercy so
yeah hi I have a question back here so in a media culture where you can find
anything that agrees with your point of view why should someone in any
anti-vaxxer movement pick up this book clearly written by someone with a
history of writing about science without relying too heavily on anecdote and also
including the facts that you would want to include in a book like this why would
they be interested because what I write about actually happened and nobody you
know and and it’s stuff that no one knew about until I wrote about it and it
really affected the number of diagnosis and so if you’re really
serious about that hockey stick graph you know which on the memes is always
like is it really coincidence are you scared yet you know if you really want
to know what cause you know at least this much of this
it’s in the book and it’s like the ante like some people can’t say no that
didn’t happen because it did actually and I have all the source notes you know
so you can check it out yourself do do you have any sensitive of whether
you’ve reached that community I mean one of the big problems we have is is is we
just don’t talk to each other you know and I wonder whether the fact that
you’re focusing on history actually should be an entry point to the
anti-vaxxers you know you’re not you didn’t write this as an anti backs and I
didn’t write it as an anti anti back yeah I’m sorry I meant yeah that’s what
I meant you didn’t write it as an anti anti backs right no I did a couple of
things one thing that I’ve noticed is that the major anti-vaccine websites
have to lie about the book to get everyone to hate it and then everyone
goes to Amazon gives me a one-star review if you want to read a bunch of
reviews of my book by people who haven’t read it read the one-star reviews on
Amazon they’re fascinating they’re not only fascinating they borrow from each
other a lot but the other thing is that basically well here’s a good story the
other day I was interviewed by a guy named Sean Cox Croxton who runs a
podcast called underground wellness and it’s basically an alternative medical
podcast and so he was kind of shy about it but really like about halfway through
I realized oh many of his listeners are anti-vaxxers and you know they’re people
interested in alternative medicine and and by the end of the thing he told me
that he himself had thought that vaccines cause autism until he read the
book so I think people who are honest about you know respecting the facts and
stuff and I’m not I’m not famous for being a bullshit artist you know it’s
like I’m known for being pretty diligent and plus
you can check out the sources yourself there’s both not only the notes but also
an online bibliography and so I think honest anti-vaxxers could learn
something from the book have you had any interaction with them any sort of
dialogue well a little bit an email I mean some emails I don’t answer the ones
that say you know someone who I used to know I wrote a blog how I was a
dangerous and evil man yeah this is dense point is I like to just expand on
for a second and then we have a another question here which is that so you know
you’re a journalist and journalists I shall I say are kind of shy yeah you
want to stay behind the one way writer or the two-way mirror
right you’re now in play right I know you now have a terrifying you know have
a t-shirt right you’re a position right you’re in
you’re an argument and a debate is right because actually the cool thing about a
book is that it’s like launching a little boat right has a life of its own
it goes places you have no idea right but you your book your book is off doing
its thing right you Steve right now a player in a debate I don’t handle that
as a journalist going forward it’s intense
I feel overexposed actually especially if you’re doing like 50 interviews or
whatever it’s like yeah I kind of want to get behind the screen again sort of
and you know I mean what I’ve been doing with this brief spotlight even though it
seems tediously analyst of many people probably but I have been trying to
signal boost autistic voices as much as I can because I am actually in an
uncomfortable position I’m a neurotypical blabber mouth
who is speaking up for this community that has been long silenced and you know
believe me I’m totally aware that at some point artistic people are gonna be
like will you shut up already like give me the microphone you know and
they should have it you know like what I said recently was that I hope autism
activists make me obsolete very quickly basically but you know I mean the one
thing I will say is that some autism activist
a neurotypical person should not have written that book he stole our history
here’s the thing that history I found it like I did the work like I’ve tried to
bring my best stuff to the table with this and yes it’s true autistic people
should have center stage and talking about autism and I am really you know
one of the things that I want to do in events from here on out anyway is to try
to have autistic people for grounded in events that I do and I just did this
great event for the National Autistic Society in England where was interviewed
by an autistic artist named John Adams it was amazing and there were people in
the audience who couldn’t talk with headphones and making noise that’s fine
the co-discoverer of the autism spectrum Judith Gould was in the audience why
doesn’t that stuff happen in America do you know autism Speaks
the major autism fundraising organization in America has not
mentioned my book at all how many times except to trash it actually without
mentioning the title the forum soon-to-be former president or whatever
trashed it in a blog post because I critic writ assault ISM speaks in an
editorial in the LA Times how many times is a book about autism history on the
bestseller list like you’d think that Autism Speaks would you know try to like
talk to me behind the scenes or something no the National Autistic
Society in England autistic people were there it was an autistic safe space I
was interviewing interviewed by an autistic interviewer England in some
ways at least is decades ahead of us so question here hi hi buddy so you’ve
spent five years pouring your life in this book and your health of some degree
you’ve built up this huge amount of experience what’s next what are you
gonna do the this is kind of the thing that I you know I have these like grand
visions of somebody I’ll write a book but
get panicked thinking about while I invest all this time and this one thing
and then what I do after that how are you getting back into the groove is
there a groove like what is your see I have this very calculated master plan
for the rest of my life actually and it involves tweeting right yeah right
exactly yeah I’m editor soon and maybe we’ll talk about that but the truth
matter is I don’t have like 20 killer book ideas because this book was a very
special case of like the zeitgeist being like at the perfect moment you know and
I sort of feel like anything I write after this will be an anti-climax after
that really you know but I’ll come up with something you know yeah I don’t
know that this book still has a lot of life in it and I still have a lot of
stuff to do like and being you know has to talk to a million conferences and
stuff so you know I’m gonna do that for a while but eventually it’s like I’ll
stop getting asked and I’ll you know be tired of talking about it and then on
the run and you know the next book is not going to be an autism book I’ll tell
you that in part so I can get out of the way so autistic people can speak for
themselves you know I don’t want to become the most famous non-autistic
writer on autism like no well this week I Steve I Maryann’s are sure right here
hey so might I have two questions the first is do you read your reviews yeah
and this you do even the bad ones let me tell you let me tell you this though I
live next door to a guy who won the Pulitzer Prize okay his name is Adam
John he’s amazing he’s very happy guy I see
him watering his garden with his shirt off and he told me he never reads his
reviews except for the Goodreads reviews actually he said I don’t mean you know
it’s reads calm he never reads his reviews like boy you know I want to be
him when I grow up basically so the second question I have is how did you
edit out because even though this is a huge book I know there was so much more
that you mare was tied to so how did you do that what was the process like
Megan’s red pencil basically here’s the thing when I got when I got the when I
got the book back from Egan I noticed that there were there was a lot of
edited marks particularly in the latter half of the book which was written in
more haste I will say when I first saw how many edit marks there were and in
fact I saw a dialog box alright I hears it here’s a shameful secret
about this book I wrote it in Microsoft Word I did not use Scrivener you know
all the things that the really hip writers used no it was a giant word file
I got a dialog box that I have never seen before and hope to never see again
in my entire life when I was reading Meegan’s edits and I said there are so
many grammatical errors and the text from this point on that Microsoft Word
will stop checking syntax so Meighan turned out to be a surgeon like at some
point like whenever I was slightly bullshitting like she would pick up on
it get rid of it you know and now I will say that it created some problems that
even I haven’t talked to Megan about which is that you know it was very
difficult say for people of color to get a diagnosis until the modern era
and a lot of I had more people of color in it but they were all in the modern
era and Meegan and I agreed that the stuff about the modern era was going on
too long and that that was where the cut should be made and we couldn’t really
cut Connor and asperger because it was so important because it says up the
epidemic and so that’s a big problem because I have a lot you know it’s like
when you try to explain I mean I’ve already like had this blow up on Twitter
unfortunately you’re trying to explain to people like well most of the cuts
were from the modern era because that’s where they had to come from and that’s
why there are so many white people in the but it kind of is it’s not a winning
argument you know but the truth no matter is that books are made by mortals
within a set of circumstances you can’t just say wait I need another six months
you know to put more women in you know and a lot of the people that got more
diagnosed in the modern era are not in that book and that’s a problem I’m gonna
take one more and then maybe right there if you feel you can bear the heavy
burden of being the last I’m gonna hit something that’s really nuts and bolt
see stuff which is you works in this book for several years right you talk
about going at it from you know we are the nice so whilst you are doing this
what y’all do to pay ran my husband is a schoolteacher so we were wealthy here’s
the truth like the people who think you know well I was selling Grateful Dead
collector’s items at the record store to walk across the street to buy food this
is a really true thing my husband was paying the rent the buyers at amoeba
music on Haight Street if you know it got to know me all too well for selling
these Grateful Dead rarities begging them for a little more money I was so
broke that it was embarrassing you know and people you know people would take me
out to dinner I’m now all paying the bad but uh you were broke it was
unbelievable and San Francisco is not a cheap place to live you know but luckily
my husband teaches at this school where Steve Jobs sent his kids so you know
it’s a pretty good school but it was really rough and I have to say that he
was a champ but five years at the five-year mark it was sort of like
really like you know because he had thought that he was going to be
supporting us for like two years you know and by the end of it
you know every I still I have to confess my computer broke I like wore it out
like the keys were falling off I still actually haven’t bought a new computer
I’ve been working on my little travel MacBook Air for the last six months I
mean hopefully I can buy a new computer soon but yeah yeah let’s work on that
next advance so so you were broke but you have enriched us thank you and thank
you thank you very much that was absolutely great and I just
want to say two things number one is there’s a little bit more food and a
little bit more wine so maybe we can prevail on Steve to hang out for a few
minutes and do some more chatting with whoever’s interested and I also want to
say that it was wonderful to have such a interesting diverse including
neuro-diverse group here and it was just wonderful to sort of hear the
interaction between autistic people between journalists who are not artistic
folks from NYU who are interested in neuroscience I mean this is just the
kind of interaction that really makes for better journalism and makes for a
smarter society so thank you all very much

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