STEVE SILBERMAN’s Journey - From Math Battles to Neurotribes

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]