Introduction Hello everyone, my name is Aakanksh Gurnani
and welcome to my YouTube channel "Neuro Chat with AG". On this channel I plan to cover
topics that are closest to my heart and support the neurodiverse community topics related to
neurodiversity autism spectrum disorder and more on the channel I will interview leaders
esteemed researchers scientists professors doctors and psychologists seeking their views
and updates on their latest work research etc. I will also chat with parents of neurodiverse
kids and adults and talk about the experiences of neurodiverse individuals my guest today Mr.
Steve Silverman is an accomplished writer and journalist known for his work on neurodiversity
and autism. He gained widespread recognition with his book "Neuro Tribes - The Legacy of Autism and
the Future of Neurodiversity". This book explores the history and future of autism through a
comprehensive and empathetic lens Silberman delves into how society's understanding of
autism has evolved and advocates for a more inclusive approach to neurodiversity investigative
journalism and storytelling skills have earned him several Awards including the Samuel Johnson
prize for non-fiction his writings cover a range of topics from technology to culture Mr. Silberman
welcome and thank you very much for the time today thank you a contra I'm very um honored to be here
thank you for reaching out to me and asking me to Journey to Journalism and Writing do this could you tell us about your journey to
be a journalist and a writer yeah sure um well my journey as a writer started out in a funny way
which is uh in fifth grade a teacher encouraged me to enter a poetry contest uh for all of New York
City and so I wrote a poem which was a pretty uh poem it was called the math battle it was about
my problems with math and it ended up winning the contest and going to a world fair called Expo 67
and um that was really exciting I like got to New York I didn't go to Expo 67 but I got to go to New
York and they took my picture and I remember when I was writing the poem uh I was always very
bad at stuff like sports which is you know pretty much all you're allowed to do or whatever
if you're a fifth grade boy in a public school in New York and so I was always you know a clutz and
terribly uh awkward and um so I had this feeling about myself that I was like embarrassed you know
I was people called me fat which I was all this but when I was writing the York I felt like wow I
can do this like it was almost like I mean video games didn't exist yet but it was almost like
wow this is like a video game I can really play and uh so I had a a really good feeling of being
creative in that way and then later on a couple of things happened that more directly led to neuro
tribes one of them was that um this very famous reporter he's now awful unfortunately but Heraldo
Rivera um he ended up becoming a right-winger but uh he came to my school he was very young
and he had just written this groundbreaking story about the terrible treatment of people
with intellectual disability and autism uh at places like institutions like Willowbrook and
so it was this big expose about how uh autistic people they didn't you know necessarily have that
terminology then but uh people who were certainly autistic and people with intellectual disability
other conditions were treated as subhuman in these statun institutions and so he was really um he did
a really important thing and he gave this talk at my high school and I thought wow journalism is a
way that people can defend people who don't have a voice in mainstream culture and that was really
inspiring um and then connected to that later on uh I read a book by a poet named Alan Ginsburg
uh who was a very famous poet he was a member of what's called The Beat Generation of writers
In America which also included Jack caroak and Allen's poem was called CSH which is the name
for the Hebrew prayer for the dead and uh it was about his mother who had schizophrenia and um
she eventually died uh after having a la omy which was a a brutal uh brain operation um and Allan
had to sign the permission form even though he was in high school so he felt very uh guilty you
know about that and cadish is a a book length poem that was about not just people with schizophrenia
but um it was about liberating people from a from mental asylums basically and institutions and
so in that sense it was kind of similar to what carala Rivera had done uh in willbrook and I ended
up getting really into Alan ginsburg's work and eventually becoming his teaching assistant uh at
a school called naropa in Boulder and the thing about Allen was that he was a poet but he was
also a very diligent researcher and so he had these huge file cabinets of information about the
CIA and um he really kept track of news events and what W wo them into his poetry and I saw Allan he
was the most famous poet in the world when he was alive and I saw Allan sort of acting in this very
effective way to challenge uh existing stereotypes about people with conditions like schizophrenia
and he also he was gay and I figured out I was gay sometime in high school and so he became a big
role model for me and I became a journalist and um you know eventually ended up writing for Wired
Magazine and wrote a story in uh 2001 called the geek syndrome which was about uh Asperger
syndrome what was what used to be called Asperger syndrome and Silicon Valley and other
high-tech communities was that I handed it into the magazine and then 911 happened and so it was
originally supposed to be the cover of wired but 11 happened it was thrown into the back of the
magazine I thought nobody would ever see it um but then much to my surprise for the next 10 years
I got email almost every week from autistic people in their families and um they were saying like
now I recognize what was going on with my uncle who was always talking about World War II or uh
people's uh autistic people saying that they'd been told that they were Geniuses when they were
young but now they could couldn't even get a job or they couldn't get health care Etc uh and so
for years after that article I was thinking well there's more to this story and you know I wish
I had time to write about it and then eventually uh I did so I wrote neurotribes and so that's how
that was sort of a pathway to writing neurotribes Inspiration Behind NeuroTribes what inspired you to focus on neurodiversity and
write neurotribes which is now a New York Times bestseller yeah well the the more direct I suppose
chain of events was that um I in 2000 I went on a cruise ship the only time I've ever been on a
cruise ship I have to say probably the last but and so we went to Alaska and it was a it was a so
called geek Cruise uh it was an entrepreneurs uh effort to replace boring Tech conferences in you
know cities like Philadelphia or whatever with uh with uh exciting cruises but have you know these
really high-powered Tech entrepreneurs on on the boat and uh and mostly programmers attending and
so to cover the cruise for Wired uh I went on the boat and the sort of the star of the cruise
was this guy named Larry wall who invented a programming language called Pearl which was very
very widely used uh and is still widely used and has been incorporated into Microsoft software and
was very much uh one of the foundations of the early web Etc so anyway so I asked him if I could
come interview him at his house and he was this wild you know kind of eccentric guy um every night
to dinner he wore a different fluorescent colored tuxedo and I found out that that was because
a tuxedo shop had been going out of business so was selling off its tuxedos really cheap so he
he bought a bunch of like neon green and you know yellow tuxedos and um so I asked him if I could
interview him at his house and he in Silicon Valley after the cruise was over and he said
yeah sure I should tell you we have a profoundly autistic daughter and I didn't know anything about
autism when he said that uh except for the fact that like everyone including autism clinicians at
the time I thought autism was very rare so I went to his house I did the interview his daughter
wasn't there even uh I did notice that he had made some unusual adjustments to the sensory
environment of his house like he had replaced the Bell on the clothes dryer with a little silent
light bulb that light up but I didn't know enough about autism yet to associate those changes with
his daughter's condition so then a few months later I was writing another uh story about another
family in Silicon Valley uh the patriarch of the family had built the first computer in the Middle
East in the 1940s and I said to the sister-in-law of the woman I was profiling can I come interview
you at at your house and she saide sure by the way we have a profoundly autistic daughter and
I thought God that's funny you know I thought it was I thought autism was very rare and so um
that got me into looking at autism uh you know when I started writing a lot of people sort of
share these theories with me which did not pan out as true like uh oh it's too much screen time
that the kids are you know looking at screens or it's the silicon and the water supply or it's
the you know they didn't have 5G yet but you know it's it's the it's the wireless Sigma you
know none of that turned out to be true but what did suggest itself as true was genetics uh and
uh there was a guy named Simon Baron Cohen who um he's done some not great things but he's also
done some good things and one of the things that he did was uh to look at high-tech communities and
notice that there were a lot of people in high in high-tech communities seem to have artistic traits
or artistic kids and later on after I'd written neurot tribes and went to Google London um it
seemed like about half the people in the room had an autistic kit actually and there were there
were a lot of um people the room so anyway so uh I ended up uh writing that story about autism
and Hightech communities and that's what led to neurotribes and your book highlights lesser known
figures in the history of autism research who do Overlooked Contributor in Autism Research you think has been the most overlooked contributor
to the field that's a that's an excellent question thank you for asking it nobody's ever asked me
that before and um yes I have a big suggestion in that regard uh there was a guy there's a guy
in my book and in autism history named Bernard rimland and he was the guy who subverted uh or
disproved really the theory that autism is caused by bad parenting but it's not him I'm gonna focus
on um he was in a sense the first um one of the two first autism parent activists um unfortunately
Bernard Rin went from from doing very good things like that to doing very bad things like uh he was
a he practically invented the antivaccine movement he was one of the people who uh blamed a falsely
blamed autism on vaccines but his collaborator for uh the first autism parents organization in
America was a woman named Ruth Christ Sullivan and Ruth Chris Sullivan who only passed away
a few years A A couple of years ago really um had a different approach to Bernard rin's for
the autism parents movement and unfortunately partly because he was a man rin's Vision prevailed
and so now you have people like RFK Jr who haven't learned anything about autism in 25 years um still
trashing vaccines and and as you know measles and Ms are rising all over the world much less Co um
but Ruth Chris Sullivan's Direction was to think in terms of accommodations support and um new
laws and she really uh laid the groundwork for what eventually became the Americans disability
Americans with Disabilities Act so his approach was what can we do to cure autistic kids and that
eventually rimland eventually hooked up with this uh sadistic actually autism researcher named
uh Ivar lovas who used brutal punishments like electric shocks and everything to try to cure
autistic kids but in the meantime she was what she was doing was trying to change the world
in a comprehensive way so that kids like her son and autistic all autistic people could
have better lives and uh uh health care and employment and all that and I sort of feel
like um Ruth Chris Sullivan who started out as a nurse and she was a an early feminist even
before the word long before the word feminist was invented and she was also an early civil rights
activist so she um helped to integrate the nurse Association in uh Louisiana where she was and
so she was very she was very Progressive and I often feel like Ruth Chris Sullivan was the
path not taken by autism parent activists really particularly in the 90s when you know Jenny
McCarthy was considered a an expert um and really if it wasn't if we paid more attention to Ruth
Chris Sullivan and less attention into Bernard rin's uh fear-mongering about vaccines we would be
in a lot better place and not just with autism but with communicable disease in general I mean you
know RFK Jr has suggested putting all research into communicable diseases on hold for I think he
said eight years or something like that it would be catastrophic we'd be going back to Medieval
Times when you know uh a significant portion of the population of Europe died of Bubonic plague
um but if we had gone with Ruth Chris Sullivan's uh direction we would have more of what we now
call the neurodiversity movement which looks for uh ways of changing the world so that people
who are neurod Divergent uh can live happier and healthier and more creative and engaged lives
can I ask do you mind if I ask you how did you Interest in Neurodiversity get interested in neurodiversity there it kind
of started because so my cousin is autistic and I used to go to his house like you know and and
when I'd go to his house um and he' like stem this is when I was pretty young so like you know
Elementary School like I I didn't know what was going on right um when I got older um my uncle
brought it up in like a conversation he was like you should understand what he's going through you
should like read a little bit on the topic and so I I didn't read that much I watched like a movie
or to but I um I started volunteering at like a local community service Organization for kids with
autism and like other other a lot of neurodiverse kids at first it was kind of like a oh you know
why am I doing this I I'd rather like you know be playing video games or something after a few
months I like you know started to see that what I was doing was actually like making people feel
better because like some of them you know they don't and this is like a big problem but I guess
still and you probably know about this like in that you know they don't get out right like yeah
that that like four hours that they spend with me on Sunday is probably like the first time they're
going out the week right right so I I really felt like making an impact I was you know it made
me feel like good about like you know how I'm spending my time that's wonderful yeah um so how
do you see the neod diversity movement you were Future of the Neurodiversity Movement talking about earlier evolving in the next decade
what are like some big Milestones you're hoping well um this may get to a u a a later question
but um one thing that is good is that even though the last uh 10 years or so in American
Life have been really disturbing and horrible um uh politically um there's there have been
quite a few advances in terms of representation of autistic people in pop culture and media so
um I could mention any number of things there's a hilarious uh comedian named Hannah gadsby who
uh identifies as a neurod Divergent and um she's made some comedy specials including one called
Douglas that has one of the most um powerful uh advocacy uh sections on Nur diversity I've ever
heard but it's also really funny because she's a hilarious comedian and says things like uh you
know my brain takes me places where other people don't go so uh so that was a good one another good
one which is a little harder to find is called a uh it's a documentary called this is not about me
which is about a uh neurod Divergent young woman named Jordan Zimmerman who was uh not verbal um
and was completely or non-speaking sorry I use the wrong term non-speaking and um her teachers
just wrote her off as unteachable Etc predicted that she would have to spend her life in an
institution uh she was very angry which is understood or understandable when you think about
how it must be to not be able to express yourself uh in speech finally somebody gave her a um access
to what's called alternative and augmentative communication AAC with an iPad and she was
finally able to express her wishes and desires and preferences and agenda for herself and she got
she ended up getting a master's degree in special education so this this woman who would have been
normally thrown away discarded uh you know and and living out her life on the back ward of some State
institution uh is uh now an educator and is doing very very well so this is not about me you can
find it on the web another great one Pixar made a short called Loop where a non-speaking um uh young
woman was played by an autistic uh young woman and the character was also black which is huge because
you the typical media representation of autistic people is a nerdy white guy um and uh so that was
a groundbreaking uh bit of representation it was also very honest it wasn't like it didn't um soft
pedal the challenges of being uh non-speaking in a speaking world and so that Pixar's Loop was
great there was another fil recent film called um the reason I jump based on a uh bestseller by
a j Japanese autistic teenager it's a great book but an even better movie because it looks at uh
autistic people cross-culturally in many different cultures like uh you know ranging from cultures
where they get quite a bit of support to cultures where they're chained up in backyard as if they're
possessed by the devil and uh so that was a very Illuminating um uh film and it also I have to
say I'm not usually a big fan of um technological simulations of autism because I feel like they're
often just stereotypical and Goofy but um the camera techniques to represent sensory overwhelm
and stuff like that in uh the reason I jump are great it's a it's a very very effective film
and another thing that's great is that autistic writers like there's a reporter um for the hill
and uh many the guardian many other Publications named Eric Michael Garcia he wrote a book called
we're not broken um uh and it was really a history of autism from an autistic perspective and that
was something that I um could have only dreamed about when I was writing neurotribes when I
was writing neurotribes if you had an article about autism in the newspaper um they would have
interviews with parents researchers and clinicians never an autistic person as if you were having
an article about feminism that only interviewed men you know so that is changing so that's all
that's all good news on the other hand we have had in the last couple of years a real Resurgence of
antivaxx um BS if I may say so and you know Trump uh very much amplifies those messages RFK Jr who
is running as a spoiler in this election so Trump will win um and has admitted that he's running as
a spoiler um uh you know as a nightmare um he went to Samoa and gave a presentation and then uh more
than 80 people died most of the kids because he told uh people in Samoa that were having a measles
outbreak not to get vaccinated and so there is a real chance that the rise of um right-wing
antivaccine stuff is going to mess things up even worse than they were before so I do feel like
I'm encouraged by the strength and resilience of the um neurod Divergent Community but I think
we're also facing some serious challenges in the years to come particularly if Trump wins
this election and I think that that Spike of awareness you were talking about um it's like in
the media as well right like the media's portrayal of autism and neurodiversity has changed a lot
over the years so def what what are like the I Media Portrayal of Autism Changes guess the big changes you've seen and what changes
would you still like like to see well one of the best things is that now if you have a story about
autism in in the media autistic people are often quoted it's no it's no longer presented as a you
know an unbearable tragedy for parents um you know it's it's presented autistic people have more
representation as a minority with a very large minority I might add with uh you know an agenda of
their own and and needs and uh preferences and how they like to talk about themselves Etc so that is
one situation that has changed for the better in recent years for sure what changes would I'd like
to see I'd like to see more representation of non white male computer geek autistic people because
it still is that way particularly you know in in you know series like the The Big Bang Theory and
all that it's um that's the most familiar image of an autistic person in media and you know um it
would be nice to see more characters like the the black young female character in Pixar's Loop um
I would like to see artistic interests be more broadly represented so uh you know everybody knows
that autistic people are into or some autistic people people are into you know technology or
computers or Doctor Who or science fiction um in part they know that because I wrote about it
but uh I'd like to see also like well what about autistic Weavers or autistic musicians um the
most celebrated interpreter of box music in the 20th century was this guy named Glenn Gould he was
almost certainly autistic I don't like to diagnose people remotely and I'm very uh conservative
about that but if you watch videos of Glen Gould on YouTube he stms he gets up from the piano and
moves his hands um I I actually spoke to a waiter who uh worked in Glen G's favorite restaurant in
Canada uh where he ate every single night when he was not on tour he would order the same dish every
night and sit at the same table these things are suggestive of autism and yet he was considered one
of the greatest inter or the greatest interpreter of say box gold Goldberg Variations which he
recorded twice uh and they were they were both considered absolutely Milestone recordings but you
rarely hear about autistic musicians Etc and um I am also a big fan of a band called The Grateful
den and um which I saw over 300 times and uh the Grateful Dead among other things um really
Advanced the technology of sound amplification at concerts and also um really Advanced taping of
live music and what I I didn't write about this in my in the book but um the people who were involved
in those efforts uh many of them had autistic traits or were you know frankly autistic including
uh Stanley owley the man who designed their sound system in the early days of was re revolutionary
sound system and also uh well he made LSD as well and before it was uh illegal and afterwards too
and uh so he used his autistic um Precision uh to make music more beautiful uh for people so I I'd
like to see a broader representation of people using their artistic traits in various forms of
media uh to uh to do good things like see the I guess stereotype in media that you would talking
about yeah and what are some practical steps that Inclusive Schools, Workplaces, and Communities schools workplaces and communities can take to
become more inclusive of your diversity well um one thing that schools could do is there is a body
of thought called Universal Design for Learning that looks at ways of making a central curriculum
available in different forms uh according to the best way that an individual student learns so
some students are primarily visual Learners who learn from reading and images other students are
primarily auditor Learners who like listen to uh you know uh books on tape and Etc and um Universal
Design for Learning is a way to take a curriculum and personalize it for individuals individual
students with different learning styles uh it's a very good way to think about uh programming
a a curriculum for a for a neurod Divergent inclusive uh but body of students um another
thing that uh workplaces can do is that one of the as a writer for Wired one thing I noticed
when I was at wired was that if you ask young entrepreneurs and startup people what kinds of
employees they're looking for they often say well you know we we're looking for people like us
real team players that doesn't work if you want a um a neuro inclusive uh company which will
make you a stronger company because as Temple grandon who you've already had on your podcast uh
points out she as a neurod Divergent woman can see problems from angles that neurotypical people
don't see them from and so you actually become a more powerful and resilient company that can
respond to changing conditions and unexpect events by having a more inclusive group of employees but
often this process of looking for people like us boils down to an interview where the potential
employee is expected to charm the interviewer in a very neurotypical way and um you know seem hip
in the same way that the other people are hip uh whereas Temple grandon suggests that uh autistic
employees attempt to get jobs by showing the quality of their work rather than charming someone
in an interview uh so that's a way of thinking about the intake process that uh would create
a more uh neuro neurodiverse population uh in companies um obviously we still need uh laws like
the Ada the Americans with Disabilities Act um the Americans with Disabilities Act used to
be a bipartisan uh cause um you know they were very famous photographs of George Bush and Bob
Dole at the signing of the Ada it's no longer true uh now that uh you know the current GOP uh
candidate for president mocks disabled people from the lecturn at his rallies uh regularly
um so you know uh it's going to become harder to fight for laws like the Ada or extensions of
laws like the Ada with a Republican party being against them um but we still need to do more work
on that um and also just I think you know one good thing that's just happening naturally is that as
more diverse representations of autism percolate into pop culture just normal people on the street
uh uh tend to become more aware that they may in fact have autistic people in their Social Circles
already and those people just need more attention in a sense and more accommodations and you know
learn how to um uh you know not pressure autistic people into social participation if they want it
but uh make sure that they feel invited Etc uh um so I do think things are generally moving in
a good direction um with just a few things on the horizon that are threatening what advice
would you give to families and caregivers of Advice for Families and Caregivers neurodiverse individuals particularly those who
may be struggling to find support resources well um there's another book that I would recommend
um particularly for parents who are struggling with ult behaviors that their children are doing
it's a book called uniquely human a different way of seeing autism by Barry presentant and it
reframes what's often called autistic Behavior as human behavior just a rational human response
to stresses in the environment and then he tells you basically how to communicate with your child
so that you're more aware of what you can do to reduce their stress and overwhelm so that's a
book that came out a month after mine we me and Barry instantly recognized that they were sort of
sister books I very much recommend that book um I can't recommend uh local support organizations
because that's not what I do I'm a historian um but there is an organization called a.org
I believe uh used to be called the Asbergers and uh autism Association of New England I think
they took the name asger out but they're very good um very very good organization that can offer
referrals uh to families and so uh that those are a couple of my recommendations and um what
advice would you give to aspiring writers and Tips for Aspiring Writers and Journalists journalists who want to take tackle complex and
impactful topics like neurod divers read a lot um when if a young person comes to me and says
oh it's so cool that you're a writer I want to be a writer too and then I say cool who are your
favorite writers there's only one wrong answer to that question the only wrong answer to that
question is oh I don't read that much I don't want to be influenced that's a very wrong answer
you should want to be influenced if if you're if you're a young writer and reading great books and
it doesn't have to be in any particular subject area um you know as I say Alan Ginsburg was a
big uh um inspiration to me but also you know Herman Melville um science fiction um just read
widely and your brain will sort of soak up tools that you can then use in your own writing uh and
you can kind of tell when you read writing um how much reading a person has done um I'm reading a
fantastic book or I have been reading a fantastic book called becoming Earth by an author named
Ferris jabber it just came out I'm sure it's going to become a New York Times bestseller in the next
couple weeks probably I hope so anyway and you can tell that he's read really a lot and not just on
the science of uh geology and how the Earth became a living planet but he's also read like Virginia
wolf and stuff so you know read widely and in different genres not just your favorite genre
try you know wouldn't kill you to wouldn't kill a young writer to read some poetry too or I know
that a lot of things outside of online writing or Importance of Reading Widely sort have sort of fallen out of fashion and um
you know I must say I I'm almost glad that as a writer I grew up in the days before the internet
because I had to read a lot and I could even be bored without being able to look at my phone um
and uh so just read widely I would say that's my biggest advice and are there any upcoming projects
or topics you're currently working on that you'd Upcoming Projects like to share yes I am my next book is going to
be on cystic fibrosis which has traditionally been a fatal diagnosis um up in until 20 years
ago most people with cystic fibrosis would die when they were teenagers or young adults um and
I'm writing it because one of my best friends has cystic fibrosis and when he sort of came out to
me as having it um I realized that I would never have known him if it wasn't for these advances in
uh Medical Science and societal support um and so in neurotribes I wrote about how changing
definitions of autism um created a community of autistic adults who could speak for themselves and
relate to each other and cystic fibrosis a similar situation is happening although for very different
reasons but a whole Community has emerged among people with cystic fibrosis who would have been
dead in previous eras um and now they're having to face things they thought they would never face
like marriage and having kids and planning for retirement and having a career so um I'm focusing
on the societal changes that the survivability and transformation of cystic fibrosis into a
chronic and manageable disease because of uh series of breakthroughs um I'm focusing on on that
community and that book is going to be called The Taste of salt and it should be out in a couple
of years from uh my same publisher as neurotribes penguin random house so I'm looking forward to
it thank you thank you so much for having me Outro on I really appreciate it and uh yeah I wish you
let growing your audience and all that thank you it was a really nice interview good good thank
you very much buddy take care [Music] oh [Music]