Unravelling The History Of Autism - Steve Silberman, Author of NeuroTribes | The Neurodivergent...

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our listeners to get an Autism and ADHD [Music] Introduction assessment hello and welcome to the neurod diverent experience I'm Jordan James also known as the autistic photographer and I'm joined by my co-host and very good friend Simon Scott and for this episode of the neurod Divergent experience we are talking to Steve Silberman he is an award-winning science writer and is the author of neurotribes the legacy of autism and the future of [Music] neurodiversity thank you so much guys I'm so honored to be here I I really appreciate the invitation oh we are honored um to have you here Steve um i a huge fan I'll go into that into just a minute I just wanted to say thank you because I was very very surprised to uh get your email in return to as an offer for this podcast so I wanted to say thank you thank you for for being here it it means a lot to both of us yeah it really does thank you so much thank you and and I especially um I mean one reason why I uh you know offered to do it was that uh I especially like encouraging neurod Divergent podcasters to do their thing and I've also you sent me a copy of uh your book is it out yet in is it available yeah yeah yeah it came out last year um I'm just I'm just going to quickly plug it the autistic experience please do the autistic experience it's a wonderful uh chorus of neurodivergent voices attesting to their own experience and to the challenges that they faced in the world World built for neurotypical people and you did a really good job of covering lots of diversity within the neurodivergent community and uh it's a beautiful and Powerful book so thank you for writing The Impact of Steve Silberman's Book, NeuroTribes, on the Neurodivergent Community it um uh that um there's a lot of people that have said a lot of lovely things about this book and that is the absolute best thing I've ever heard and let me tell let me tell the listeners why and now I get to tell you why I'm so why I wanted you hear why I'm such a big fan in 2018 I was diagnosed with depression my depression was due to the fact that in work I made a mistake the people at my work blamed me being autistic I therefore decided that because I was already diagnosed that I really hated being autistic because it meant that I was really Terri at things and I Only Could See the negative in 2019 you know I started sharing my photography I found photography and it really showed me that being autistic is actually a really positive thing you know being autistic being ADHD really helped me with my hyperfocus with my photography and I got very good very quickly but then I was thinking you know I I want to learn more about this positive feeling and I went straight to your book because I loveed great I loved the title because I'm a big fan I'm a huge fan of evolution evolution is actually my my actual special interest and the evolution of like autistic people and and why we exist the the neurod Divergent mind why it's important and I thought neurotribes because obviously tribes being a very evolutionary thing within the human species within the ape species we are tribes and I loved the neurotribe idea of like oh we're all going to come together with this and I listened to your book and it set a fire in me that will never go out and that fire was these are my people I'm going to fight for my people and it is what I did and it is what I continue to do every day on online um in real life my entire family is neurod Divergent my wife both my kids all my friends we are a tribe we're a family we're a neuro family and it's it was your words and the history as well I'm a huge fan of History myself as well the history aspects of the book are just incredible incredible thank you and that is why I really felt like oh I want to Advocate and I want to make change and it was your book that Lit that fire so I want to thank you for that because everything I do is is because of that fire that you Steve Silverman you set that fire thank you so much I'm I'm so grateful and so honored and that's in my wildest dreams that's what I hoped would happen uh just so you know I I'll give you the author's perspective I'm writing a book that you know has sparked a fire in lots of people's lives the whole time I was writing I thought I was a failure I thought that I knew that it was not like any other autism book that had ever been written before but I thought maybe that was bad um and I was actually afraid to show it to my editor for years I I I uh because I kept thinking like no I have to add another chapter and then she'll see that it's really special and uh uh so the whole time uh you know I was broke I was um stressed out um my mom was diagnosed with dementia eventually and it was sort of uh a very stressful period where I did not know that the book would ever reach an audience and um I'll tell you the first sign that I had that it might be okay actually which was a do you guys know who Oliver sax was neurologist author of uh the man who M took his life aware of the name yeah yeah yeah he's he's a very brilliant he was a very brilliant neurologist uh and my friend and he uh wrote a book called an anthropologist on Mars about Temple grandon that for its time was a very very uh Progressive and compassionate view of autistic people and um I've been talking to him about the book because we were friends the whole time I was writing it but he died uh eventually but then I sent the first copy of the book that anybody had ever seen my H my husband hadn't even seen it I sent it to his editor and assistant Kate Edgar uh because I since she had edited his books I knew that you know she was a good editor and that she would tell me the truth and so when I woke up the next morning there were a series of text messages on my phone she had stayed up all night reading it and you know some of the text messages were like you know I'm on page 147 I'm weeping you know so I I actually like cried for gratitude because um you know she liked it and I figured well if Kate Edgar likes it then maybe other people will like it too but that was the first uh redeeming you know sign of hope that I had for almost five years of writing well I must say the book actually does have many moments of hope I think for a lot of people Steve I think that's why it resonates with so many people um as somebody who's only just been diagnosed I suppose within the last it's 18 months now um your book was so affirming for somebody who did feel like there was something wrong with them for such a very long time it does very much humanize my own experiences so I can understand why you're edit found it that way because I find it that way I've yet to read the entirety of the book Steve because I keep having to go back and catching up on chapters because I find I read something and reflect and then want to go back and reflect on it more and feel like I've whether I've missed something so again thank you for that but there are some there are some topics within the book that I found absolutely fascinating and especially when you were talking about Dr asger um which is something that I know that Jordan and I The History of Autism and the Progress of Neurodiversity would really love to touch on um so if you could for our listeners that maybe haven't read the book would you be able to paint a picture of the man because from my understanding of looking at him there is a lot of misconception and misunderstanding as to who he was and what his motives with understanding autistic people were well sure um you know that's probably the the naughtiest question that we could begin with but I will I I'll go right to it um Hans asper worked at a clinic uh in uh in Vienna uh before World War II that was a very Progressive and inclusive uh place for neurode Divergent people it was basically a place of Last Resort where parents would send kids who had been kicked out of schools or uh arrested you know for crimes or whatever and so they would send them to Asperger's Clinic where they had a very compassionate um group of clinicians including a woman named victorine Zach who was apparently very um good with working with non-speaking uh children and uh they had art on the walls and furniture that had been purpose-built for the clinic that was like nice so it wasn't like Hospital furniture or something like that they would have um plays that the that the uh uh kids in the would put on on Sunday mornings they had walks in the garden so that all sounds really nice and an American psychiatrist who visited the clinic uh in the years before the war said that the conception of what was normal or abnormal in the clinic was unusually loose in that behavior was only considered problematic if the behavior was problematic for the child and created problems for the child so in other words in a lot of Psychiatry really for most of the 20th century if you did weird things or you know stemmed or whatever like that was um proof that you had a disease or a syndrome and that you know that behavior should be literally electric shocked out of you uh in America but so uh Asperger's Clinic was much more Progressive than that but there was a big problem which was uh in the late 30s the Nazis took took over Austria and uh many of Asperger's bosses were Nazis already the ones that weren't either committed suicide or um fled and uh some of them died in concentration camps um but uh so the Nazis took over and Eugenics laws were issued from Berlin and there was a killing Center uh established by the Nazis um that someone from from Asperger's Clinic ended up running I talk about this in detail uh in the book um and so Asperger referred as far as I know two children to that clinic which is bad like there's there's no way that that's good except the one thing to understand is that working as a as a medical doctor and and particularly a psychologist under the Nazis was was really difficult uh and in fact um some medical students who protested the Eugenics laws in Berlin were beheaded publicly they were known as the white rose so asger elected to stay in his position which the authors of a competing book to mine in a different key frame as you know asger support of the Nazis if you read his writing um it's clear that he didn't and in fact he makes a very powerful plea for society to consider uh autism and other forms of neurod Divergence as um qualities that require support and guidance from the community for across the whole lifespan meanwhile in America you know shortly thereafter autism was considered a childhood uh disease that was caused by bad parenting at Etc um so Asperger's Clinic was a core of anti-nazi resistance and I'm not saying that myself I am quoting the words of a Jewish boy who was uh concealed by one of Asperger's colleagues through the war and they even like went to the Opera and stuff like that needless to say if that uh colleague of Asbergers had been discovered and everyone in the clinic knew it was happening um they would have all gone to the gestapo and and you know been killed or at least imprisoned probably killed um and so they protected him through the war the problem is that the authors of this competing book um in a different key um had access to a scholar named herwick cheze who was the source of all the uh asber or most of the Asperger was a Nazi stuff um Herrick Che had been talking to me because I got in touch with him for like seven years but never telling me anything even though he always promised me that he would he would always say oh I'm busy right now I'll talk to you in six months what I didn't know was that he had made an exclusive agreement with the authors of the other book to not give me that information and to give it to them and so I did not have access to that information while I was writing that writing the book once their book came out and I saw what that guy had given to them and I talked to one of the authors and he told me I said I said you know I'm a journalist I don't think this is ethical for you to you know sort of make some private agreement scholar you know and he said he said you're a print guy we're television people you can believe the amount of times I've heard that Steve after working in broadcasting myself it drives me insane you're right I couldn't I almost couldn't believe it um but so now you know unfortun and there's another uh there's a woman named ed the Sheffer who wrote a book called Asperger's children uh as if you read if you actually read Asperger's children which I don't think many people have done you see that her son had been recently diagnosed and she says he hates the label autistic you know so she's basically a lot of parents you know start out that position where they hate the label but eventually neurod Divergent people many of them embrac the label because it explains why they were bullied why they were you know uh struggling in school Etc so she what she does is she talks about how nerd virgin people were treated in Germany during the war it was terrible there was an extermination program against them that's all true I write about neurot tribes too it's very difficult to hear right but what she doesn't do is talk about what was happening in America at the same time which was we were sterilizing neurod dierent people we were giving them lobotomies and electric shock putting them in institutions um so Edith's Edith's book weirdly suggests that you know yes Germany was evil but it was incredibly evil you know yes it was and so were we and she doesn't say that so anyway that's my that's my uh take on what's happened someday I will write more about this because there's much more to say I did go back and make a couple of revisions to the paperback of neurotribes to incorporate information that that guy still wouldn't give me even after the other book was was you know I had to basically uh recapitulate his research um to figure out what he had figured out but you know now I see stuff like Asperger sent hundreds of children to the death camp it no it's not it just didn't happen it didn't happen and I don't think we have to lie to make Eugenics look bad you know my my whole my whole book you know uh is very much an argument against Eugenics as Asperger was making himself at the time actually but um so anyway so that's I don't want to get you know that's a deep rabbit hole but that's uh that's my opinion I mean utterly fascinating and um I remember because when I was um when I was first diagnosed it said um which is not a term I particularly like Anyway is autistic Spectrum Disorder it's not a term that I like right I always do you know when people use the word disorder I always say I don't claim to know what the order of the universe is supposed to be love that disorder no it's definitely not it's definitely for for me I mean I I think it's pretty much like for most of us it's a neurotype it's just a difference of evolution by the synaptic pruning process and and I'm not going to get into synaptic pruning because I'm I'm I I know so much about it I'll be a a week it it's just Evolution it's so obvious to me that this is supposed to exist and I think history proves that and and I think that people like Asbergers could see that at the time like this is supposed to exist and I think what I liked when when um it when you quoted him saying that um something about like science wouldn't exist without a Sprinkle of autism right science and art art exactly because I mean that's what I am I'm an artist and and I love science so I look at those two things which are like two of my favorite things in the world is Art and Science and I'm like for me being autistic is is integral to that you know it's integral to change yeah yeah absolutely I I look at at the positives so much and um yeah so I I completely lost my way there no problem no problem well you know here's the thing when I started writing about autism it was uh a long time ago it was uh 2001 um I wrote an article uh for Wired Magazine where I was an uh a reporter in editor called the geek syndrome about um basically Asperger syndrome in Silicon Valley um and when I started writing that article you know I was a science writer for Wired Magazine and I had the framing in my mind that was Universal at the time among clinicians anyway um that autism was a disorder it was a syndrome you know so uh I went into it you know writing about people with a disorder the so-called medical model as Nur Divergent self- Advocates say now yeah yeah and what what sort of helped dislodge the medical model from my mind were a couple of experiences for one thing um I had read in many many you know sort of autism textbooks that autistic people lack the ability to do pretend play or imaginative play um and one of the kids I interviewed for that article was this adorable you know little geek uh who was building a world on his computer uh on another planet that had like three gender the PE you know the the beings who lived there had three genders and uh he was making up all these words and I thought boy that one thing this kid doesn't lack is the ability to do pretend play he's a genius at it um yeah now Lorna Wing who came up with that concept the British cognitive uh psychologist who came up or psychiatrist came up with that concept told me later no no I meant using pretend play as a social thing which it's true he was building that world in his room but another sort of moment when I questioned the prevailing view of autism was when I sat behind a one-way mirror at a at a major uh University where kids were brought to get diagnosed and um so I'm sitting behind a oneway mirror with a very well-known uh autism expert whose name I will not mention but um so this this kid comes into the room and he's um very energetic and sweet and uh he sees a a replica of the Star Trek uh ship Enterprise on a table he rushes over to it because he loves Star Trek and he's So Into You know all the things that he's doing and um I said to the woman are you telling me that this kid will never have friends or any relationships and she said it's very unlikely and I thought really like this kid seems great you know and so even back in 2001 I was starting to question the medical model but then you know later on I went to a conference called autre that was run by autistic people for autistic people and not only were they wonderful to each other not only did I see that the usual bullet pointed list of deficits and dysfunctions did not you know uh describe them but also it was even a more pleasant environment for me in some ways than the typical neurotypical uh environment in that but you know I'm a I'm a fat guy like you know here it is um I never felt any as they say shade uh for being fat uh at a treat it was like by opening themselves up to the diversity of human minds they also open themselves up to the diversity of human forms and um it was lovely and in fact when I got out of uh autre after spending four days there it was very unpleasant to come back into the neurotypical world where everybody seemed like little Donald Trumps like running around you know promoting themselves and being narcissists um anyway so when I came back to my desk where I'm sitting now to continue writing neurot tribes after going to utre you know I start typing out the list of deficits and dysfunctions I'm like Steve this is BS like you were just with these people they're not like that and so that was really the big shift I think it's incredible that I mean you're a journalist you know you're not um a psychiatrist or or a so-called and I always say soal so-called professional you're just a journalist who's observing but you have such an a skill of of observation um and I wish more people would do this that they would look at neur Divergence from a completely unique perspective of just observation so ra I see a lot of this um a autism ADHD research and it always it always comes from the deficit so it always comes from the oh autism is a disorder let's look at what causes it it's never oh by the way this this neurotype this this difference is integral to the development of the human species as we know it but unfortunately a lot of these people uh struggle to live in the world that we have currently because there's not enough accommodation for this very very unique mindset this very unique way of thinking that has literally literally changed the world as we know it you know like you said like we were saying sorry science and art and music being a type of art but but we have we have changed the world as we know it and the thing is is as an observer you went in there from a very neutral perspective of I want to learn and you immediately saw the benefits of this neurotype and yet these professionals because they of their cognitive dissonance because of their one track mindedness of this is a bad thing we have to fix this thing they they and still now still now they can't see it and it drives me mad how so many of us can see it so obviously especially those of us who are who are actually neurod Divergent and we can see the huge benefit that we are as a people and yet I'm still hearing treatment cures therapies and and causes and I'm like well I mean the the cause is sex sex is the cause right exactly of neur Divergence like there's nothing else right or is somebody as some as some wit put it online um autism causes vaccines because there have been so many gifted scientists so many gifted scientists you know and and uh the thing is like to to finish a thought I had earlier when I started looking at autism initially as a neurotypical journalist you know I saw people with a condition or a syndrome or or a set of deficits and dysfunctions or whatever but I very quickly you know saw that that in fact there were was other ways of Being Human and now I don't even think of uh neurod Divergent people as having a a common condition I think of them as type just a type of people like a natural type like you'd look in a garden and you'd see like oh those are those flowers that are purple and that you know uh grow really you know and those are those which prefer shade you know and and you know have yellow flowers and um that's how I see and it's funny there's I don't know which edition of my book you've read but um there was a uh there was a cover in America let me get it actually my British publisher and God bless them because they they you know treated me very well but my British publisher said too cheerful so the British the sounds about right the British oh not only that too cheerful right so uh the uh not only that they wouldn't use the word neurodiversity in the subtitle why because they had a meeting of the marketing people and the marketing people said we've never heard of this word and I said trust me you're GNA hear it a lot really really soon you know and when I started writing neurotribes neurodiversity the word neurodiversity was never in the news so I so I started a Google you know news search uh about it um now I get about 50 citations a day of the of the word neurodiversity in in global news so it was funny I mean I'm very grateful to uh Allan and Unwin in England for publishing my book there and I ended up winning the Samuel Johnson prize which was really a right now called the biley gford prize congratulations on that thank you yeah it was the first science book in the history of the prize to ever win which uh believe me I was shot myself well that's a testament to to your skill as a journalist and the book that you've written Steve well thank you I think in for when when I think about that it it it actually annoys me and let let let me tell you why is because it's it's such a great achievement and it deserves it and you would think okay this book is amazing this book is great groundbreaking this this book is gamechanging and it definitely changed the game for a lot of us especially the way that I think I think there is an entire wave of of of Advocates out there that are there because of your book it's like that pay it forward so what you created has then gone on to create and I created my book which did the same thing it it affirmed so many people and made so many other people and and and you know that because they told you they literally they literally tell me they message me they email me you know they tell me in person they they write reviews and you so you know it's true and and I think the reason why it annoys me is because we're listening we we heard you Steve why did these so-called professionals not hear you why do you think that that they're not listening to us here's the thing I may have a more optimistic view which is that a lot of professionals have gotten in touch with me I just I just got I can't I can't say who it is uh because it's still confidential but um a representative of the French government uh just got in touch with me recently who really wants to talk about neur neurod diversity accommodations in the workplace for the French government so people are listen fantastic yeah it's really good yeah that just happened actually we're gonna talk later on the month but um uh lots and lots and lots of professionals have gotten in touch with me and said that uh I changed their my book changed their view of autism um so there is a a gradual you know you can't just wave a hand and or write a book for five years and expect things to change overnight like you know a lot of times uh nerd virgin people come to me and say oh my God it's so frustrating I'm so depressed because it takes so long for societal change to happen and this is what I say when I was in high school I you know I'm not officially neurod Divergent but I think it's an interesting question is homosexuality uh a form of neurodivergence I think there are many arguments uh to be made for that when I was in high school I had crushes on all my you know straight best friends I thought my life would be hopeless uh I entertained thoughts of self harm and suicide I was bullied you know one part of your book that I related to a lot was was getting bullied there were two kids who would wait for me every morning as I walked to um Junior High I think junior high school and and beat me up uh ninth grade actually beat me up like every morning and spit on me and call me a [ __ ] and you know all that and uh so where and not only that if you know I'd gone to the school nurse and said well I was actually you know lusting after my best friend she could have had me arrested for you know uh well if I ever been so lucky enough to do anything um but look this is my wedding ring I'm married I'm incredibly happily married to a wonderful science teacher uh who whose family by the way has ner Divergent traits yeah and so that amount of social change has happened in my lifetime going from you should be in jail or a mental Asylum to even my Republican relatives came to our wedding so that's a lot of social change and it happened in relatively short time so that's encouraging it is it is and and and I have to say like um you know I I've had the same thing with with professionals who have have contacted me saying that they've actually changed their language language being an incredibly important thing for n Divergent people hu way more important than people give it a lot of credit for it's true because I think a lot of it is it's it's the difference between feeling terrible about yourself and feeling great about yourself could be literally a single word um words are so important and and they've changed their language within clinics doctors and professionals have done that so I suppose what what what what I I I I meant to say typical in the very neurod Divergent way what I was meant to say is is why do people still approach um you know autism and ADHD they they always approach it from the negative so even even when it comes down to uh the assessments the assessments are all deficit-based and it really upsets me because I'll tell you a really quick story um I was doing one of those online assessments with a friend of mine because I was convinced he was neurod Divergent so we did one of those online assessments none of it's official it's all like a bit fun whatever buzz feed sort of yeah yeah I mean it's a bit better than that but you know what I'm saying but essentially we we both answered it we both did the same questions we we both hit those neurod Divergent markers that I would consider to be very neurod Divergent you know like monologuing being very interested hyper Focus um those sort of things but the the the difference between the two of us um which wasn't a difference for me when I first got diagnosed was I have loads of friends like I have so many friends I am really social I'm really Embracing Neurodiversity great you know in around people as long as everybody knows who I am I'm fine um it's when people don't know who I am it it it it makes me very nervous um that unpredictability um but essentially I'm a very gregarious person um he is not he is very antisocial he doesn't really have any friends he doesn't really like people I was not autistic anymore he was highly likely to be autistic and I went we answered all the same questions exactly the same yeah except he said he liked he didn't like people and I said I did and I was like that's terrible that's so bad and that's that's like within the last year yeah and I just think and and that that is the issue for me it is it is always is deficit based so when a child or an adult goes through The Autism Spectrum an assessment it's what can't you do what can't you do where how do you suffer how do you struggle and it shouldn't be about that it should be it should be about that but it should also be about what are you good at what what are your talents what what what can you do what turns you on yeah to be fair I see we'll talk later so I'm on Old fans I'm just kidding I'm not but well hello there in any case me me I I might do some of that [Music] yeah so um you know on the frontier of changing language one you know I don't like to be um a stickler uh about stuff like this but one thing that amuses me like if people use the word neurodiversity in the wrong way I tend not to bust them hard um as some neurod diers people do because I feel like well they're trying you know that that's better but one thing that I that I think but one thing that I think is funny is there's there's a little sort of genre of trying articles these days that say like my daughter has neurodiversity well no it's actually the human species that has neurodiversity yes I'm so glad you bought this up Steve because we have an episode we have an early episode called the you know myths you know like busting episode and my first one that I always hit is the difference between neurodiversity and neurod Divergence and neurodiversity is everyone including neurotypicals and neurod diverence is everyone except neuro uh typicals but then I add another one I've got my own one which is called uh tan which is it's just that's how it's ended up it's the alternative neurotype which is those of us who are neurodivergent who are born neurod Divergent because obviously neurod Divergent can be PTSD and Trauma and OCD and things that you pick up um through childhood but those of us who are born those of us who go through that different synaptic pruning process and I don't like to say lack because I think that it actually ends up we we end up with more synaptic Pathways especially those of um infants which is why we can be all ages at all times It just fits into place it's it's fascinating to me the the brain is fascinating yeah but essentially that that's what I I came up with this tan which is the alternative neurotype which has to exist so I I'm really glad you brought that up because like from the man himself um who who essentially sort of brought neurodiversity the world you are actually saying neurodiversity is everyone and neurodivergence is everyone but neurotypicals yes and um yeah now now I can go and tell everyone I got what Steve Silman told me so you know well you know prob probably the worst formulation of that of that trying uh model is living with neurodiversity you know it's like oh God does that mean you have a does that mean you have a cat named neur diversity you know yeah yes I I did this thing Steve where I I I go and do talks in schools so and I and I always take my my Winnie the Pooh Bear he's my original Winnie the Poo and I take him with me to to do the school talks because I I use him for stemming and and and self comforting and I take him there and I and I make a joke and I say oh his name is autism and I live with him and I live with autism just exactly just so I can show you how silly it sounds it's like it's not a best friend that visits over Christmas it's it's we are autistic and yeah the the amount of strange phrases that I come across Ross that I'm just like are you hearing and one of them and I want to hear your thoughts on this because I think I'm pretty much the first person that's ever thought of this um I don't know if I am but I think I am is everybody says on the Spectrum would you agree everyone says on the spectrum they do yes it's but the the idea of the spectrum is not a linear it is a encompassing uh almost like an atom so I'm I'm a big fan of science here's here's my atom and my de Oxi Bono claic acid cuz I'm fancy like that yeah right my husband knits hats with DNA in the pattern my husband does oh that's that is beautiful very cool I want one now you for your birthday J could be a r probably oh I love that I I love I love Deo no now messing up well you you'll have to edit that out otherwise de oyono cleric acid um anyway so it's all-encompassing thing the the the Spectrum as it were is all-encompassing um we can be in any place there's no high there's no low there's no uh severe there's no mild uh we're all a bit spicy so I said well we're not on it we're in it in the Spectrum so that's what I've started saying and other people started saying it as well I say it a lot now yeah and now we are we are not on the Spectrum we're in the Spectrum that's great son I Unpacking the History of Autism Diagnosis am about to give you a very important blessing because because um I did one of the last interviews with Lura Wing who is the British cognitive psychiatrist who invented the Spectrum the concept of the spectrum based on the ideas of Asperger and his colleagues um one of the things that we talked about was that I asked her what was frustrating about the way that that idea had been received by society and she said people always talk about the Spectrum as as if it's linear you know like it runs from low to high or extreme to mild or I never meant the Spectrum to be linear I meant it to be more like three-dimensional where everybody occupies their individual point in a space that was the Spectrum but it was not a line so you're not only not the first person to think of that Lorna Wing who was the first person to think of the spectrum thought of that too so that's actually one of the most important things that I tell people and I'm very against since we're talking about language I'm very against the low functioning high functioning dichotomy or binary indeed because it's simply inaccurate like it's not like oh it's not nice it's inaccurate uh and as a young autistic woman said if they tell From Deficits to Strengths tell you that you're low functioning they deny your skills and potential and if they tell you you're high functioning they deny your challenges and struggles and so when I I do not use low low functioning versus high functioning and I also think there's it's problematic to talk about severe autism um not that and what I am not doing is I am not denying that some people are extremely challenged by their autism um one of the people I write about at Great length in the book is this H kid Leo Rosa the in the chapter called the boy who loves green straws and uh he's basically non-verbal when I met him it took him about three days to even notice I was in the room it seemed but that was actually wrong that was a wrong perception of mine because he did a really cool thing uh the first two days he would just kind of walked past me without even seeming to see me and then the third day he walked into the room and he just bumped his head into my shoulder and then walked so he you know he'd been seeing me which was so sweet you know and he's still you know basically non-verbal and so you know he still has a lot of challenges um but the and his his parents as I talk about in the book uh started out as like antivaxers and we going to cure Leo and you know we're going to throw a lot of money at this problem you know he is a very very happy neurodivergent person and his mother is very very happy not writing editorials about how no one understands how much she sh she suffers whatever you know um and so the I do think that more attention should be paid by uh to uh the struggles of uh non-speaking autistic people uh primarily providing them with technology that helps them Express their thoughts and feelings if possible um there's a wonderful movie I can recommend I don't know if it's where it's available online in uh the UK but it's called this is not about me and it's about a young woman named Jordan Zimmerman who was considered completely unteachable when she was young uh she had meltdown she was angry uh she you know was non-speaking um and you know her parents were basically told that she would have to spend her life in institutions well she just got a master's degree in special education because she got uh hooked up with the right teachers who gave her AAC alternative and augmentative communication uh able to type to speak her thoughts and once she could express herself a lot of her anger went away it's what I've said many times is that we don't need curing we need accommodation MH we need support I've met non non-speaking autistic people or or people with limited um communication skills that have the most incredible minds and it breaks my heart knowing that so many people look straight through them like they're just a burden and it's it's heartbreaking because like if those people were given a chance and and and this is a whole thing for me is the fact that that the world we live in doesn't seem to accommodate our potential Reaching Your Potential as a neurod Divergent individual is possibly one of the hardest things for for most humans to do and that's because of the way that Society overall looks as as like this this thing to be fixed or this this broken version of a neurotypical and it still thinks that and and this is why I I love showing my photography and and and basically saying to people you know th this this picture this picture these pictures that that that I take this is because I'm neurod Divergent I can do this and I learned how to take pictures that have been on the front covers of the like the leading magazines on the planet of Photography you know CR Al acclaimed photos that I took a Steve I took them a week after I picked up my first camera a week and I have proof of that it was after my birthday I went and took a picture called Pony Heaven which won awards was on telly and on magazines and and I look at that and and that's when I go look what what being neurod Divergent can do and and and I'm not I'm not unique I am one of so many of us and it took me me 37 years to to find the thing that I'm really good at because when I was at Challenging Ableism and Cure Culture school I actually did this this is crazy when I was at school I did a photography what we call a GCSE uh when I was about 16 I did that and I was really interested but because I was so badly bullied and by the way this is the first time I've ever told this to anybody because I was so badly bullied I ended up skipping out on school and getting into lots of fights and I never actually finished my um photography um exams and I wanted to be a photographer when I was a kid and that left me because I I Associated so badly with how I was treated and how what the sort of I I became a I became a very angry person because of how I was treated and I never got a chance to reach my potential again because how I was treated and it it really upsets me because there's so many kids and I remember when I went into a school once um there was a kid that had this amazing art he must have been about eight or nine and he came and he after my talk he showed me his art and Steve it was amazing so I said to the teacher I said how often does he get to do this and he goes oh we we do art once a week and I went this kid should be doing art every day there shouldn't be a once a week I said this kid should be doing every day because why can't this kid be an artist why is it so important for you to say oh this kid should do what everyone else does why are we not just encouraging special interest to be something better yeah and that was something by the way that uh Hans asger um uh talked about a lot uh there was one of his one of the kids in his Clinic when he was like three he started drawing triangles and circles in the sand he was clearly obsessed by geometry and he was lucky because his mother who talked to Asperger and his colleagues um instead of saying will you stop that you know just uh do something normal for you know she encouraged his interest in Geometry then when he was in school he was considered uh incapable of taking Advanced uh math classes because he was you know clearly autistic um and uh he he sort of badgered his teachers into giving him Advanced tutoring and math he ended up going on to University where in his freshman year he detected an error in one of Isaac Newton's proofs and he went on to become an assistant professor of astronomy and so special interests are you know that's one of the things that neurod Divergent people are teaching society that special interests are the the Royal Road into a meaningful life for people in the Spectrum yeah yeah it makes me think of Tiger Woods and Michael Jordan if their fathers had not put a club or a basketball in their hand a thousand times a day where yeah we we have lost the goats of of their sport it makes me think of how many people in society and how much Society has lost by not allowing people to fully Embrace their um their special interest just going back to the book Steve when we're talking about the legacy of autism do you think people think smarter about people who think differently now I do uh but you know I I have a very unusual perspective because they all send me emails so you know um but I but you know as I say I'm like reading you know 50 or I'm not reading them all but you know I see like 50 news stories a day that talk about the concept of neurodiversity and and you know that seems hopeful um I do think that um the general perspective on autism uh has shifted slightly uh the the uh Beat Generation poet Gary Snyder in America once talked about moving the world a millionth of an inch and I I feel like I my book did move the world a The Power of Special Interests millionth of an inch which makes me glad I was alive and then didn't waste my life you know but but I mean there's plenty of more work to be done needless to say and in some ways there's even been a backlash I would say to some of that growth because now you have Nicole Shanahan who is the vice presidential pick for Robert Kennedy Jr who is a spoiler candidate uh backed by far-right money to enable Donald Trump to win she's talking about autism as a chronic illness caused by pollution and and all that and so and of course RFK Jr is very antix um repeating all the lies all the BS all the myths all the work and he talks about it's so harmful he talks about you know their brains are dead they're zombies like you know it it's as if I mean he might as well be in Germany but in in any case um you know so I did not P I did not anticipate that I also did not anticipate Nazis marching in the streets of America while I was writing about Nazis marching through Vienna when I was writing neurotribes so in some ways uh American society is has faced some really serious setbacks in the last few years because of trump and the GOP but I'm gonna keep fighting very scary it's very scary but you know I do yeah yeah I do think that the mobilization of the neurod diverent community will be valuable Force for good in the battles that will be coming no I I couldn't agree more Stephen I as a student of History I often find it baffling that with a bit of research and a bit of cognitive appreciation for what's come before us we could so learn from the mistakes of what has come before and yet we choose to be stuck in this feedback loop of hell where we just ask the same questions and don't really listen to any of the quite clear answers that are in front of us I think we have we really come to a halt with that but again looking at the past and i' found I'm currently once again listening to the chapter about Cana in the book and I have to ask Steve do you think he stole the idea of autism and just turned it into whatever he would get him a paper well here's I don't think he was that bad and I I do think he was had um good intentions in in one way which is that uh you know his he and his wife Were Heroes in terms of rescuing Jewish clinicians from the from a certain death in the concentration camp undoubtedly most crucially and this was the big for autism history nerds the biggest uh scoop in my book it was this was a world changing Revelation for autism history experts was that Connor's assistant George Franco had been Asperger's assistant in Vienna and so when Connor saw his first autistic patient a guy named Donald T who by the way passed away not that long ago and had had a very happy life by the way um he uh he had breakfast with this same group of friends every weekday morning which I thought was really sweet I don't even get to do that how nice but yeah but um in any case so what I think was I I think that Connor and Asperger and it is pronounced Connor even though it looks like caner but um so in fact some of the patients used to call him father o Conor is hilarious but in any in in any case um Asperger and Connor had different jobs and that led them to treat autism differently Asperger's job was to rehabilitate kids who had been C you know cast out of schools and and uh funnel through the juvenile courts to the clinic um whereas Leo Connor was attempting to prove the child psychiatry was a valid field in America and um to do that Connor latched onto autism as a childhood disorder that could only be treated not by the parents or anything but by you know intensive psychoanalysis and institutionalization and so Connor was trying to to validate a whole field of Psychiatry whereas Asperger and his colleagues were just trying to find ways for their uh kids to fit into society in hopefully a helpful way and add their value to our society so I think you know I definitely uh think that Connor lied about never having read Asperger's paper and I thought about this a lot I mean you know aser paper came out uh you know in the early 1940s and so people say well of course Connor didn't read it it was in German Connor's native language well of course Connor didn't read it it was in a this obscure German medical journal that no you know nobody wanted to hear about uh you know because of the Nazis Connor cited that journal all the time and you know so he he did not mention Asperger's name until like 40 years later or something like that and he said something like you know the condition that that I I it's in the book I believe my book the condition that that man wrote about bears no relation to the childhood disorder that I you know blah blah blah so I I think he did self-promote in that way but I don't think it's um you know you could say well you know if Connor stole it from asger did asger steal it from grun suara a uh a Russian uh psychiatrist who wrote about um kids who were very delightfully recognizable as having Asperger syndrome back in the 20s um but she called it schizotypic so you know the word a you know so um these ideas are out there I don't think Connor stole the idea he stole the clinician in a sense but he rescued him from the you know ovens and uh so Connor definitely got the help of um you know sort of Asperger and frankl's accumulated expertise and humanistic perspective but unfortunately he was unable to find Franco a job at John's Hopkins so they went away George frl and Anie Vice uh Asperger he was Connor was working with two of Asperger's former contacts in Austria um they went away and then Connor was at Liberty to Define autism in a very narrow way uh to suggest that it was extremely rare to suggest that the only way to deal with it is to do give the parents you know Decades of psychoanalysis blaming them really why do you know I had Parents tell me that who went to psychiatrist during this period and the psychiatrist would say why do you hate your children so much you know yeah go I remember listening to that it was awful yeah it's horrible I I wonder like you know the the damage that was done with this misconception of what autism and Nur Divergence is by Connor um with you know and let's be fair he did have a lot of cognitive distance he didn't really want to listen to other people it seems he very much wanted it to be the way he said and you know he he he he needed to be right as as a lot of these the these um people have always seemed to be um which is very un scientific I've always thought the most scientific thing is admitting oh I made a mistake and I'm glad that you've corrected it thank you very much for proving me wrong now we can move on with the science because the science should always be more important than somebody's ego but but a lot of um people like con it wasn't and I and I feel like um he opened the door as it were to all this negativity that still exists today even when like like you know with with ADHD I still hear oh it's just it's just bad parenting you still hear this now got naughty children yeah and I'm going to say something that I don't think I've ever said in public before but it's really an interesting way to look at it which is that I think that some of the force driving the uh vaccine skepticism you know which is now uh has reached completely hellish Dimensions with the the uh GOP the Republicans in New Hampshire now no longer requiring polio or measles vaccines for child care they just had that vote last week like hello iron lungs like polio vaccine was one of the greatest scientific accomplishments of humankind you know so now they're going to get rid of it I think that one of the forces driving that is Parental guilt left over from the uh Connor age of blaming par for autism because parents here no it's actually vaccines that CA on and even though it's completely wrong they embrace it because at least it's not blaming them yes which is me which frustrates me because I I think anybody in the know knows that it's it's hereditary it's Evolution it's genetics it's it's supposed to exist it is passed on Through the Ages you know to like I said before to advance the human species and yes we have incredibly impaired individuals that that that are disabled more so because because of their being autistic but we also I think a lot of people look at people like that and just assume that they can't do anything assume that they are incapable of of amazing things and I think that's the worst thing isn't that you know there there's a lot of impaired autistic people that that that require a lot of um support I think it's the fact that nobody appreciates that those people are also have Incredible Minds and are capable of incredible things yeah exactly and imagine I mean you know we have accommodations for physical disability imagine if people said who cares about Wheelchairs and accessible restrooms someday with the help of science everyone will walk you know that's basically been the that's basically been the uh the the approach of science to to cognitive disabilities how do we make these people normal not like how do we make their lives better how do we make them normal I did have one one more really important question I really wanted just just I just wanted to ask you about this is the the idea and I mentioned this in my book is snake oil salesman and it was the first time that I'd ever heard about all these people doing cures and and and basically conning conning parents into thinking that they could cure their kid and the only way they could cure them was to buy the stuff that they were selling or to do the treatments that they were selling SAS yeah exactly yeah yeah exactly why do you think that still exists people are much more well okay I completely understand that that parents feel like there are very few resources for their children and so um it's getting better but uh you know it's still still really difficult and so you know somebody comes along and says well you have to flush the lead out of their systems because the heavy metals are causing you know and then they have a whole industry an elaborate multiple Industries set up to reinforce these um concepts of autism as a disease that can be cured so there are Labs as I write about in neurotribes there are Labs where you send your you know clippings of your children's hair and then the the clippings come back and they say oh yes your you know your child has two much selenium but luckily this company which is also by the way owned by the owner of the lab um sells anti- selenium you know flushing pills what a coincidence yes what a coincidence imag and so there you know through the 80s and 90s it was a vast uh uh industry because because stuff that is not considered an official pharmaceutical is barely regulated in the US and so they could sell all kinds of things and they can I mean you had people prescribing if you were I mean there were people who were doing castration to to cure autism um it's a horrific y we've been we as a people have been through horrific treatment at the hands of neurotypicals trying to make us like them and it continues today with ABA therapy so my my last question Ste I really appreciate you being here I really do you it's been an honor yeah thank you my last question to you Steve is to all the people listening to all the parents listening who who worry about their autistic children what advice would you give them to to help them Reach their potential well this is this is the advice that I would give one of the lessons that I felt I learned from looking deeply into you know more than half a century of autism history was that the most dire predictions that are made about children by uh medical authorities by teachers Etc they the Support and Accommodation children often find ways to grow up and become autistic adults and Thrive that give the lie to those dire predictions and so you know one of the parents that I wrote about in the book uh when his daughter was born uh and then diagnosed he was told uh you know your daughter's artistic we have very little idea of what she'll be capable of she's really no different than an animal well she also just got her master's degree in special education so don't believe the most dire predictions uh ensure that your child if you're a parent um uh gets support from within the Spectrum Community from other neurod Divergent people you if if you don't know any or know where to find them um in America you can uh there's a uh a um an organization called a I think they've taken Asperger's name out of it but uh it's a it's a good organization I'm about to talk to uh next week I'm going to have a a zoom with a Angels which a angel which is a group of older most of the late diagnosed autistic women in London find your people you know if you're an autistic adult and you can find them in books as well as you know in meetings um and for parents don't believe the worst things that everyone is telling you about your child have hope have faith and um yes it's true not every autistic person will learn to speak verbally but maybe they could learn to type on on a keyboard uh and just help them find their way to their own way of being the best person they can possibly be Steve that was incredible I I would like to add also to every parent out there read neurot tribes oh and and my and my book yes the autistic exp which is which is officially Now supported by Steve Silberman um amendments to get the quote in which is which has made my made my life actually like there is no day week or month you you reading my book and and saying what you said has has made me like honestly Steve I have nothing but absolute pure love in my heart for you um thank you thank you for existing thank you for for those five years thank you for everything since then thank you for being you and thank you for coming on the neurod Divergent experience it has been the most incredible one of the most incredible moments in my life and definitely the most incredible moment I've I've had since been since I've been doing this oh great thank you so much guys I really appreciate it um and I've been very honored to be here and Simon thanks for the for everything you did as well no no thank you so much it's it's been an absolute pleasure for me and the what you've brought to our community Steve cannot be understated it's uh you've you've been a gift So for anybody that is please go and read this book you can find neurot tribes the legacy of autism at most bookstores across the UK and the US it's been translated into 15 languages so no excuse Steve 25 oh I to update my notes that's absolutely incredible even more people the see our neuro tribe gets bigger every single day and it's in audible which is great wow what an incredible interview that was Jord and I'm so looking forward to going back and listening to that over and over again and I'm sure you guys as well will have found some inspiration some knowledge or some a moment of reassurance from that conversation because I'm absolutely full of those things right now I could have listened to Steve talk for hours and hours so if you've enjoyed what you've heard please subscribe to hear more from us on other episodes like this cuz some of the guests we've got coming up guys I can't wait to share with you please rate and leave a review on this podcast it does really help it's absolutely invaluable as always Jordan say goodbye to the lovely listeners Steve so man read my book Steve Silverman read your book he liked it he said it was really good and now I'm really happy goodbye to the people Jordan I'm going to go and stem myself to sleep [Music]