Steve Silberman on the Legacy of Autism and the Future of Neurodiversity
My guest this week is Steve Silberman, an award-winning science writer who authored the 2015 book NeuroTribes: The Legacy of Autism and the Future of Neurodiversity, a brilliant book that upends conventional thinking about autism and suggests a broader model for acceptance, understanding, and full participation in society for people who think differently. Steve’s articles have appeared in Wired, the New York Times, the New Yorker, the Financial Times, the Boston Globe, the MIT Technology Review, and more.
In our conversation, Steve and I talk about neurodivergence, autism, acceptance, tolerance, changing cultures, systemic change, and so much more. As a science writer who researched the history of autism in writing his book for more than five years, Steve brings an incredible breadth of knowledge, as well as passion for the neurodiversity movement, to the show. By the end of this interview I was inspired and motivated for the changes to come, and grateful there are thought leaders like Steve doing this important work in the world. I hope you enjoy our conversation!
>>Click here to watch my After the Show video about this episode!<<
About Steve Silberman
Steve Silberman is an award-winning science writer whose articles have appeared in Wired, the New York Times, the New Yorker, the Financial Times, the Boston Globe, the MIT Technology Review, Nature, Salon, and many other publications. He is the author of NeuroTribes: The Legacy of Autism and the Future of Neurodiversity (Avery 2015), which Oliver Sacks called a “sweeping and penetrating history…presented with a rare sympathy and sensitivity.” The book became a widely-praised bestseller in the United States and the United Kingdom, and won the 2015 Samuel Johnson prize for non-fiction, a California Book Award, and a Books for a Better Life award. It was chosen as one of the Best Books of 2015 by The New York Times, The Economist, The Financial Times, The Boston Globe, The Independent, and many other publications, and is being translated into 13 languages.
In April 2016, Silberman gave the keynote speech at the United Nations for World Autism Awareness Day. He has given talks on the history of autism at Yale, Harvard, MIT, Oxford, the National Academy of Sciences, Queen Mary University, Apple, Microsoft, Google, the 92nd Street Y, Imperial College London, the MIND Institute at UC Davis, and many other major institutions. His TED talk, “The Forgotten History of Autism,” has been viewed more than a million times and translated into 25 languages.
Things you’ll learn from this episode
- The impetus for Steve’s book NeuroTribes
- How and why the anti-vaccine movement has negatively affected the autistic community
- The real impact of language like “epidemic” in relation to neurodifferences like autism
- How Steve’s book NeuroTribes has been received by members of the autistic community
- Steve’s thoughts on how parents raising neurodiverse kids can best support the neurodiversity movement
- The importance of autistic peer mentoring
Resources mentioned for Steve Silberman, autism, and neurodiversity
- NeuroTribes: The Legacy of Autism and the Future of Neurodiversity by Steve Silberman
- The Geek Syndrome (Steve’s article in Wired Magazine, 12/01/01)
- Uniquely Human: A Different Way of Seeing Autism by Barry Prizant
Steve Silberman 0:00
I no longer think of neurodiversity is like a political stance or, or even a movement. I think if it is a living fact, like biodiversity, and we can pathologize it endlessly and say, you know that all these variations or diseases or syndromes or whatever, which was the approach for most of the 20th century, or we can celebrate that diversity as a gift to our society that requires us to be responsible, and to provide people with whatever they need to achieve success in whatever form their success would be.
Debbie Reber 0:42
Welcome to the Tilt Parenting podcast, a podcast featuring interviews and conversations aimed at inspiring, informing and supporting parents raising differently wired kids. I’m your host Debbie Reber and today’s conversation is one I am so excited to share with you. My guest is Steve Silverman, a science writer who authored the 2015 book, NeuroTribes: The Legacy of Autism and the Future of Neurodiversity, a brilliant book that upends conventional thinking about autism and suggests a broader model for acceptance, understanding and full participation in society for people who think differently. Steve’s articles have appeared in Wired, The New York Times, The New Yorker, the Financial Times, The Boston Globe, the MIT Technology Review, Nature, Salon, Shambala Sun and many other publications. In April 2016, Steve gave the keynote speech at the United Nations for World Autism Awareness Day. He’s also given talks on the history of autism at Yale, Harvard, MIT, Oxford, the National Academy of Sciences Queen Mary University, Apple, Microsoft, Google, the 92nd Street Y and more. His TED talk, The Forgotten History of Autism has been viewed more than a million times and translated into 25 languages. having this conversation with Steve about neuro difference acceptance, tolerance, changing cultures, systemic change, and much more with such a thrill and honor Asher and my husband Derin can attest to the fact that I got off our interview feeling motivated and inspired about where we are going in this revolution to change the way difference is perceived and experienced in the world. I can’t wait to share it with you. If you want to help me amplify these messages and spread our conversation far and wide. I invite you to share this episode with your communities online and offline. And if you aren’t already signed up for my Tilt Parenting newsletter, I would love for you to join me. Every Thursday, I send out a short email including a quick note for me a link to that week’s podcast and bonus after the show video. And links to five must read articles from the news that week that are relevant to parents like us. Just visit Tilt Parenting that calm and sign up where it says join the Tilt revolution. And now without further ado, here’s my conversation with Steve. Hey, Steve, welcome to the podcast.
Steve Silberman 3:06
Hey, Debbie. I’m really honored to be here. Thank you for asking me to be on the show.
Debbie Reber 3:10
Oh, my goodness. Well, the honor is mine. I’m super excited to be bringing you to the Tilt Parenting audience. And I really wanted to introduce your work NeuroTribes, I’m sure many people in my audience have read the book or are familiar with it. And there are probably a lot of people who aren’t who are new to this journey. So maybe we could just start if you could tell us a little bit about NeuroTribes the book, what your big goal was in writing it and who it’s aimed at?
Steve Silberman 3:38
Sure. Well, the inspiration to write it was the fact that in 2001, I wrote an article about autism in high tech communities like Silicon Valley, it was an article called The Geek syndrome that appeared in Wired. And the article came out right after 9/11. So I figured that, you know, hardly anyone would have time to read it or care about it. But instead, what happened was, I got an email about the article for 10 years. And that’s very, very unusual for a magazine article. Usually they’re forgotten overnight. And the emails, many of which were from parents actually, were about very basic problems in accessing services for their kids on the spectrum. I also got lots of emails from people who are on the spectrum themselves, who were unable to, you know, ever find a job, even if they had been told they were prodigies when they were young, because they couldn’t make it through a face-to-face interview. And so these emails were very heart wrenching, and really had to do with very basic failure of society to provide reasonable support and accommodations for people on the spectrum. their families. And it was causing a tremendous amount of, you know, just the sheer volume of human suffering that I read about practically every week, for 10 years after my article came out. Meanwhile, a funny thing was happening, which was that the entire world was becoming obsessed with autism. But they weren’t what they were becoming obsessed with was the question as to whether or not vaccines cause autism. And this, too, was also causing a tremendous amount of human suffering, because in fact, I remember reading on an anti-vaccine website, this woman’s saying that, you know, basically, the day that she ruined her life and her daughter’s life was the day that she brought her daughter for a measles, mumps and rubella vaccine. And so people were really suffering from these ideas that were constantly being argued about online. While meanwhile, no one was talking about what families and autistic people, i.e., the people really on the frontlines of autism, were having to deal with, which didn’t really have to do with vaccines are what causes autism or whatever. But it had to do with a failure of society to support them. You know, it’s like every article you read for, for that whole decade, practically, even in very deeply reported newspapers, like the New York Times, would always say, we don’t really know why the number of autism diagnoses, you know, keeps going up. And I thought, really 10 years have passed, we don’t really know like, why don’t we know this. And so as a science writer, I took it upon myself to start going back through autism history, to try to figure out where the concerns of the mainstream media, which seemed to be all about vaccines, and the concerns of parents and autistic people, which seemed to be all about accessing services, where those two interests diverged. And what I discovered in the course of my research was that the history of autism as it had been sort of repeated over and over again, and 1000s of textbooks and wikipedia was incorrect. And that if you understood the correct timeline of autism’s discovery, that it was a lot easier to understand why the estimates of prevalence and number of diagnoses started to soar in the 1990s. And so my book is basically the story of how societal attitudes and medical models and Disability Rights politics changed around autism over the course of 80 years, in order to try to answer questions that were literally keeping parents up at night, and preventing autistic people from having, you know, as productive and safe and secure lives as they possibly could.
Debbie Reber 8:07
That’s a fascinating story. And as you’re saying that my son Asher, who’s 13 now was, you know, born in 2004. So I very much remember the Andrew Wakefield study, and you know, reading all about that. And that was a discussion among many parents in my peer group about the vaccination connection. And so it’s really just interesting, you know, in those 13 years, we’ve come a long way, in terms of understanding the science better. And I know your TED talk specifically talks about that study. When did you do your TED talk about autism?
Steve Silberman 8:41
I did the TED talk about, I guess, about three years ago, it was several months before the book came out. It was sort of a lucky break, in a sense that I got asked to do a TED talk, because I had done a presentation for a sort of a live performance group in San Francisco on the woman who invented the icons for the Macintosh, Susan Kerr, and the people who saw that liked the presentation. And then they were invited to give a series of talks at TED three years ago. And so they said, Well, you can talk about anything you want. And I said, well, I have this book coming out in a few months, you know, do you want me to talk about that. And the reason why I talked specifically about a very basic, very simplified explanation of what’s explained in much more detail in my book is that I felt like parents had been bombarded by misinformation and controversy and arguments and just so much anger on every side. You know, the anti-vaccine people were angry at Big Pharma. And I had written about Big Pharma for wired. I was a senior science writer for Wired for like 15 years. I knew that big pharma was very capable of doing terrible things. But were they doing a terrible thing about vaccines? means and the more that I looked into that, you know, Andrew Wakefield is a liar. Let me just say that upfront. But when I started my book, I did not take that approach. I thought that Andrew Wakefield might be a very sincere and earnest scientist who tended to be sloppy, because everyone knew that his study was badly run, and that there were ethical concerns. And that, you know, it came out that he had a patent for an alternative vaccine formulation that he hoped would be adopted after the MMR was, you know, made the object of fear and terror. But the more that I studied the history of autism, which Andrew Wakefield continually misrepresented, it was very obvious to me after several years of research, that what Andrew had done was, I had, I had him on tape saying, I didn’t know anything about autism before I did my study, you know, his famous study. And so what he did was he really, he read this book called The Age of Autism that was put together by the biggest anti vaxxers on the web, and he just appropriated their history, which was wrong. And how do I know that? Because I read the same papers that they did. And they continuously misrepresented them. So after a while, I stopped thinking of Andrew Wakefield as a true believer and just started to think of him as a fraud. But the problem is that the anti-vaccine movement and Andrew Wakefield did something that was very useful for parents in a way, in that everyone knew that for some set of unknown reasons, until my book came out, the number of diagnoses started to soar in the early 90s. Everyone knew that, but no one knew why. And so there was sort of a vacuum of innocence, storytelling, about what had happened to produce that startling spike and diagnoses. And so what Wakefield in the anti vaxxers did was provide parents with a story. And it was a story about the evils of Big Pharma and, you know, corrupt journalists and all this. And it was a very emotionally compelling story. If you are a parent, who was searching your three-year-old daughter’s eyes for signs of eye contact, you very well, my believe the story, there was only one problem with the story. It was false. But somebody had to figure out why it was false. And what really happened. And so that’s what I spent five years of my life doing.
Debbie Reber 12:38
Wow, I was gonna ask how long it took you to write the book. I mean, it’s so comprehensive. It’s an incredible history of autism, you know, and how it was understood in different ways. And the people who were the first to bring it into the forefront. So yeah, five years. So
Steve Silberman 12:54
I’ll tell you a funny story. You know, now I can laugh about it, because it’s over. But basically, what happened was, you know, I wrote a book proposal, and my agent sold it to a publisher. And the publisher expected that the book would take a year and a half to write, which was my original deadline, and would be maybe 200 pages. Well, a year and a half in, I had written maybe three quarters of the introduction and half of the first chapter. And because I was a journalist who was used to, you know, really having to be very, very diligent about meeting deadlines. I felt like a total failure. And eventually what happened was, the book took five years to write. In the end, I ended up handing in an 800 page manuscript. And my publisher was very nice, but she was like, hasty, you know, I mean, it’s like if we publish this at 800 pages, the people who most need to read it will never read it. And they were so right. I, you know, I mean, this is embarrassing to admit, but I didn’t use any high tech, you know, software or anything to write the book. It was a Word file for five years, it was a single word file. And so I didn’t even really like this is a secret. I haven’t even really said this in public. But I didn’t even really know how long it was until I got an advance reading copy. And I was like, Oh, my God, it looks like a phone book. I’ve been sitting here for five years.
Debbie Reber 14:24
Oh, my goodness. Well, it is I mean, and I’m an author as well, and I slave over my books. And you know, each one feels like giving birth to a child. I can’t even imagine five years on the same project and the level, you know, just the depth that you go into. It’s really incredible work. So I guess congratulations three years after it came out, but it’s really a phenomenal book.
Steve Silberman 14:48
Well, thank you. I wanted to ask you a question. When you started to notice that Asher was different. Did you ever feel like you were kind of bombarded with negative messaging about what could be happening to him and what his potential was?
Debbie Reber 15:04
That’s such a good question. I’ve never been asked that. I was so much in kind of damage control and focused on the behavioral issues. And it was that he is a very complicated person, he has multiple diagnoses as many differently wired people do. And there was such a lack of clarity about what might be going on. So I think I was just so caught up in, you know, making sure that things on the playground went okay, or managing damage control with the big meltdowns and things that were happening. So I would say no, and as soon as I got that diagnosis, you know, at first it was PDDNOS, when he was, I think, six or five, and then Autism Spectrum Disorder, right before he turned nine, I was already in kind of immersed in the research and feeling, I guess, inspired and motivated about his potential. So yeah, I
Steve Silberman 15:59
I mean, there was, you know, one of the things I wrote about in the book, is that there were really a couple of generations of parents that heard nothing but bad news, you know, about their kids potential, like doctors would say, I mean, I literally, I think I have a quote in the book. This is a fate worse than death, but you must learn to bear it. And it came along with all kinds of parent blaming, because the prevailing theory among psychoanalysis analysts, for most of the 20th century, was that autism was caused by, you know, so-called refrigerator parenting. And so for a couple of generations, not only did you have to deal with your child’s difficult behavior, but you had to deal with scorn and guilt from the rest of society, because the leading authorities in psychiatry were saying that you caused your child’s condition. So I have to say that, as I’ve, you know, gone on book tour and stuff. There, there were times when I get to meet these really older parents whose kids were diagnosed in the, you know, even in the 50s. And I am so in awe of their ability to not only take care of their kids, but to fight to change laws, so that all disabled kids, not even just kids with autism, but so that all disabled kids would have x equal access to education. It’s really like, one of the things that I became really sad about in the course of writing the book was that by the time I started writing neuro tribes, the parents movement had really sort of crystallized around the anti-vaccine thing. And if you were not anti-vaccine, you were anti parent, you know, I would read a lot in online forums and common threads. But that was not how the parent movement started, the parent movement was originally very motivated to change the world, so that their kids would have a better life in the future. And the kids like theirs would have a better life in the future. Right? I sort of feel like one virtue of I mean, this is a whole other subject. But one virtue of the neurodiversity movement, which we can explain and talk about in a minute, but is that it’s moved parents more towards the original mission of the parents movement in autism, which was to change the world. So it was a better place for the kids.
Debbie Reber 18:31
That’s great to hear. I mean, that’s why I started Tilt Parenting. That’s what I’m all about. Because I don’t believe anybody’s broken here. I believe this is a modern evolution, and that our kids shouldn’t have to try to fit into any sort of box that wasn’t designed for them.
Steve Silberman 18:48
Yeah, sure. And those boxes, you know, you mentioned that Asher got, you know, multiple diagnoses, and that the diagnoses perhaps even changed over time, or whatever. It’s like, all these diagnostic boxes, I feel like they’re just these very narrow and sort of contingent lenses through which we’re looking at a living thing, which is the diversity of human minds. And that’s just a biological fact. People say to me, you know, well, do you support neurodiversity? I don’t exist, whether I support it or not. It’s I don’t I no longer think of neurodiversity is like a political stance or, or even a movement, I think if it is a living fact, like biodiversity, and we can pathologize it endlessly and say, you know, that all these variations or diseases or syndromes or whatever, which was the approach for most of the 20th century, or we can celebrate that diversity as a gift to our society that requires us to be responsible, and to provide people with whatever they need to achieve success in whatever form their success would be.
Debbie Reber 20:06
Absolutely you Yes. I’m just, I’m just loving hearing this all from you, you’re totally echoing, you know, my belief system. And I know that of so many of our listeners here, as you were sharing that I was reminded of a conversation I had with Asher, we were having a picnic in Vondelpark, which is just down the street from us. It’s a great little spot. But I was telling Asher and my husband about this article I had read, and I think I even pulled it up on my phone, and the headline was something associating the risks of being autistic with I think it was maybe Pitocin. I don’t know, it was something in childbirth. And he cut me off. And he’s like, the risks. What do you mean, the risks? What do they think it is a disease and right, yeah, good point, Ash. Good. You know, and all that language. You know, as soon as I see that word epidemic, or any of that kind of language, I’m instantly they’ve lost me. I think that’s harmful.
Steve Silberman 21:10
Oh, I know. And I, this is something that I think I left out of the book. But it was very interesting. There’s a group in America called Autism Speaks. And they were basically the biggest game in town for autism, fundraising, and, you know, charity walks and all that for a long time, because their founders were very, very well connected in both Hollywood and media, and government. And I remember that when the CDC revised its estimate of autism prevalence several years ago, while I was writing the book, they had a teleconference. And the head of the CDC, this guy Thomas Frieden, you know, said, Well, you know, we’re up-revising our estimate. But it doesn’t mean that there’s been a true increase in the incidence of autism. You know, we’re thinking that it’s probably because of better community awareness. And the President of Autism Speaks at that time, came out to the microphone, and read from a Merriam Webster dictionary, the definition of the word epidemic. And he said, autism is now officially an epidemic in the United States. Nobody else on the panel had said anything like that, in fact, they had said the opposite. And so finally, I found out that the person who told them to go out there was the former chief science officer of Autism Speaks, and I will say her name because I’m not here to humiliate anyone. But I ended up interviewing her. And I said, Why did you use the word epidemic? It’s such an inflammatory word. And she said, well, that wasn’t for parents to hear. That was for policymakers to hear. If you say something like, well, there seems to be an increase in prevalence, but that may be because of the community and when nobody listens. But if you say the word epidemic that gets their attention, you know, and so she had said that word on every major national news show that night, and who’s listening? You know, is it congressmen? Sure, couple, probably. But millions of parents are listening, and they’re terrified.
Debbie Reber 23:26
Oh, my goodness. Yeah. I mean, it’s the parents who are terrified that that might happen to their child. It’s the parents of neurotypical kids who are so grateful it didn’t happen to their child, and it perpetuates this idea that it’s a negative thing. And, and then it’s autistic people themselves who feel marginalized every time it’s used. That’s really upsetting to hear and not surprising at the same time. Yeah. So I’m curious, actually, about the response among the autism community. I told you, and when I first invited you on the podcast that when the book arrived, my son, I opened the Amazon package, and he stole it from me before I had a chance to start reading it. And he loved the book. And you know, it was really insightful. It was super inspiring. And parts of it were really difficult for him to kind of grapple with as he learned more about his tribe and the history of autistic people and how they’ve been treated. But how, as the autism community as a whole, responded to both your book and then you as an advocate for the community?
Steve Silberman 24:33
Well, let’s start by saying there is no such thing as the autism community as a whole.
Debbie Reber 24:42
Steve Silberman 24:45
Autistic individuals, yes. The good news is that the vast majority of artistic feedback that I’ve gotten for the book has been incredibly positive, if not sort of ecstatically thankful. So I’m incredibly touched and grateful and humble for that feedback, it’s been wonderful to see. And it’s been great because autistic people will give the book to their parents so that they, you know, feel better understood and their families. And autistic people were definitely one of the groups that I was trying to write for. I actually had three groups in mind when I was writing the book, one was autistic people themselves. One was parents, particularly parents who were sort of on the fence about vaccines, and whether or not there was an autism epidemic. And the other was clinicians and researchers, because I knew that even people who had been in the field for 40 or 50 years, did not know the details of, for instance, how Hans Asperger, you know, ran this clinic in the midst of a country that was being taken over by the Nazis. And, you know, without getting into contemporary politics too much, let’s just say that I had no idea that the Nazi passages in my book would become so relevant, virtually overnight. Again, that’s a frightening thing. But in any case, what was hard was that if you think about it, those three groups all have very different agendas. You know, the clinicians and researchers are interested in improving their medical understanding of autism, you know, but that can lead to stuff like words like risk, and, you know, causation theories and what parents want to build a better world for their children and, you know, just want their kids to be happy and have good lives. But that doesn’t always mean that they are always in line with what Autistic Self Advocates one. And Autistic Self Advocates and neurodiversity activists can sometimes be very angry at parents, because they see parents are trying to speak for them, you know, with groups like Autism Speaks. So it wasn’t just that there were three groups with three very different agendas. You know, the dark secret is that they were all kind of at each other’s throats in a way, like the, you know, the Autistic Self Advocates, really didn’t trust the researchers and clinicians, because they were aware of this long history of abuse and bogus theories, and you know, all that. So it was what took me five years really, was trying to come up with a book that would speak to all of those groups. Now, within the autistic community specifically, as I say, the vast majority of the feedback has been tremendously positive. There is a small but loud minority of autistic people. And I mean, really small, but sometimes really loud, who think I shouldn’t have written the book. Because I’m not autistic myself. I’m neurotypical. And I think they have a valid point. You know, imagine if a guy came along and said, I’m gonna write the definitive history of feminism. White guy wrote, you know, the big book on the Civil Rights Movement. And I’m gay, you know. And so if I heard Oh, there’s this new book that everyone’s reading about gayness that was written by a straight guy, I’d be like, really? I mean, I wouldn’t dismiss it, you know. But in any case, I can’t help that. I came, I was born this way. I can’t change. I came to autism, because I was a very well-established science writer of Wired. So it did not come to autism, through a personal or family connection. And one thing that I think is really interesting is that one of the most frequent reactions that I get from everyone, pretty much when I tell them I wrote a book about autism, they say, Oh, do you have a child on the spectrum? And I don’t. And what’s weird about that, is that if you think about it, I mean, autism is a huge thing. Society has been enmeshed in controversies about autism for at least 20 years, and in fact, much longer. Autism is also very common. You know, lots of people are on the spectrum. So why wouldn’t a science writer write about it? And I think the reason that people ask me that is because of a sort of hold over belief that autism is rare, and so that you wouldn’t write about it. Unless you in a sense, were forced to buy your fate. And I wrote about it by choice, because I thought that families and autistic people were suffering much more than they should. So in terms of me being neurotypical Yes, I’m sorry. But I hope that in both my books and in my talks, that I have tried to be as good an ally to the autism rights movement as I could. And I often when people ask me to do talks or whatever, I often say, Well, could we do a panel where I talked to Autistic Self Advocates? And I tried to, you know, in a sense, deflect the spotlight onto autistic voices as much as I can.
Debbie Reber 30:30
That’s great. I was curious about that. And I know there is a very active actually autistic community that I follow on Twitter. And in many ways, I think you’re exactly right. It isn’t a rare thing. You’re a science writer, you’re kind of the perfect person to write this book. And I think, you know, a parent who has a child on this spectrum, or someone on the spectrum, this would have been a different book, and not to say, a less valuable book, but a different book.
Steve Silberman 30:57
Yeah. And also, I mean, I don’t want to dwell on those negative reactions, and they have every right to them. But a couple of people have said, like, well, an autistic person should have written this book, you know, what, why did this guy do this, and it’s like, I did the historical work. It’s not like I copied stuff, you know, from the neurodiversity movement or the autism rights movement. It’s true that the last part of the book is about the autism rights movement. But it’s not like the whole book, you know, was just laying out there on people’s blogs, you know, waiting for me to come along and scoop it up, you know, I had to do unbelievable, obsessive, dare I say, even autistic, like deep dives into historical archives. And, you know, I’ve never read so many case histories in my life. And I also and in fact, I want to tell you this quick story, one of the first things that I did for the book that turned out to be one of the most important things that I ever did for the book, was that I went to a an artistic retreat called archery. So it was a retreat run by autistic people. For autistic people, I had to get an exemption actually, as a neurotypical observer, because normally, it was just for autistic people. So I spent a week with a bunch of great autistic adults, and there were some kids there, but mostly it was people in their 20s and 30s, and 40s. And it was one of the most liberating, stress free, delightful, bluntly honest, you know, environments I’ve ever been in. In other words, I was immersed in autistic culture. And when I came back from that, for one thing, the neurotypical world, the so-called real world, you know, seemed awful. It was like, you know, everyone was constantly pushing, you know, their own ego trips and lying slightly for social grease, you know. And, in fact, I remember this hilarious moment in archery when I met this guy the night before. And so I saw him the next morning, and so I did the neurotypical thing. And I went up to him, I said, Hey, buddy, how did you sleep? And he said, why? Really good question. You know, why was I making this, you know, small talk. So it was challenging in a good way. And when I got back to my desk, where I’m sitting right now, to really, you know, tackle writing NeuroTribes, I, you know, I start writing a description of what autism is. And, you know, it was sort of a distillation of 1000 textbooks I’d read, and I literally stopped myself and I said, Steve, what are you doing? These people are not like this. You were just with them for a week. You know, their full human being? You can’t say that, well, autistic people don’t get humor and irony. Are you kidding? Like, they were incredibly witty and ironic, cuttingly witty and ironic, you know, at times. So the experience of being immersed in autistic culture, just for a week was like a bath that washed away my stereotypes before writing.
Debbie Reber 34:17
That’s awesome. Thanks for sharing that story. I love it. So all right, I have one more question before we end this conversation, which I wish could just go on and on. But one of my biggest goals is to help parents like me, and you know, Tilt serves parents with differently wired kids of all kinds of neurodiversity. And I really believe that we as parents of these kids are in the best possible position to try to push the needle forward in terms of how our kids and neurodiverse people in general are treated in the educational system and society and so forth. I’m curious to know what thoughts you have on how maybe where you see the neurodiversity movement going or how we as a community of engaged parents can play a role in pushing that forward?
Steve Silberman 35:06
Well, one thing I like are parents, organizations or blogs and whatnot that are open to listening to the voices of autistic adults. I think it’s really important, I think the future, well, even the present, but also the future of the neurodiversity movement, is in neuro divergent individuals joining together with parents, rather than seeing them as the enemy. You know, some parents are the enemy. And, you know, some neurodiversity activists are really rough to work with. But in general, I think if a bridge of ally ship could be built between those two communities, that it can be so powerful that it can change the world in a single generation. And I’ll give you two concrete examples. There’s a website called The Thinking Person’s Guide to Autism, I believe it’s thinkingautism.com. And it’s, you know, was started by two parents, one of whom is autistic herself, as well as having a significantly disabled autistic son. And in fact, even the neurotypical parent, Shannon Rosa, who I write about a great length in NeuroTribes, her son is significantly disabled. So when people say, Oh, this neurodiversity stuff, it’s just for the quote unquote, high functioning, chatty, or whatever. That’s wrong. The neurodiversity movement is an outgrowth of the disability rights movement, and the disability rights movement did not get started by people leaving the people in wheelchairs behind. You know, it’s a movement for for everyone in society, in a sense, and certainly for all kinds of disabled people. So thinking autism.com, I think it is pretty sure that the row is a great model of a blog, you know, that is read by a lot of parents that is staffed by parents, but that also includes the voices of autistic adults, some of whom are also parents. So I think that’s a paradigm for an institution that’s the future. Another thing that I would recommend to your audience is a different book than mine. Uniquely Human by Barry Prizant.
Debbie Reber 37:21
Yes, it is trying to get him on the show, oh, I can
Steve Silberman 37:25
I’ll put in a good word for awesome. He is wonderful. And, you know, if your child has difficult behavior, reading uniquely human will give you ways of thinking about it. You know, it’s not that there’s not much overlap with my book. But the two books came out virtually the same month, I think, and both Barry and I immediately recognized that they were like sister books, in a way. My book was the history and his book was the lessons of applied history, in a sense, and one of the reasons why Barry’s book is so good, is because he’s listened to autistic people, both his clients and other autistic people, for decades now. So it’s informed by autistic experience, but it’s a book that’s really written for parents. So you know, that’s a good book, there’s another book out there called The Real Experts that was written by autistic people. That is, has some very hopeful and inspiring messages from autistic people to young autistic people. And, you know, I think artistic peer mentoring is really important. I’ve seen the magic that can happen, when even a nonverbal kid hangs out with an autistic adult, who is verbal, you know, and there’s so many times these days, you hear well, you know, low, quote, unquote, low functioning people in high functioning people, they don’t even have the same condition. Well, if you put a nonverbal child with an autistic adult who can talk, you often see that they relate to one another. In Temple Grandin talks about this too, from personal experience, that there’s a kind of, you know, vibe that they can get on, that is good for both of them. And so I think autistic peer mentoring is going to be a really big thing in the future. And so those are the directions that I see us going.
Debbie Reber 29:22
That’s great. Thank you. And thank you for sharing those resources. And I will make sure they’re on the show notes pages. So listeners, you can check out The Thinking Person’s Guide to Autism and all the books that Steve has recommended. And Steve, I again, I wish we could go on but I am going to let you get on with your day. And I just want to say thank you so much. This has been such a fascinating conversation. And I’m grateful just for your insight and your perspective and your stories and your apparently were the first to find out a few inside scoops about your book. So that’s kind of cool, too. So thank you so much. Thanks so much.
Steve Silberman 39:57
I really appreciate it and it’s been a delight. Right.
Debbie Reber 40:02
You’ve been listening to the Tilt Parenting podcast for the show notes for this episode including links to Steve’s website, his book NeuroTribes and the other resources we discussed visit tiltparenting.com/session91. And don’t forget to check out my After the Show short video where I share my top takeaways from my conversation with Steve. You’ll find a link on the show notes page or you can go straight to tilt parenting that calm slash after the show. If you enjoy the Tilt podcast and would like to help me cover the costs of producing it, please consider signing up for my Patreon campaign. Patreon is a simple membership platform that allows people to make a small monthly contribution as little as $2 a month to fund the show. If you want to help visit patreon.com/tiltparenting Lastly, if you like what you heard on today’s episode, I would be grateful if you would take a minute and just head over to iTunes and leave us a rating or review that really helps our podcast get noticed in the crowded parenting podcast space. Thanks again for listening. For more information on Tilt Parenting, visit www.tiltparenting.com
Do you have an idea for an upcoming episode? Please share your idea in my Suggestion Box.