We are closing out Autism Acceptance Month with a conversation between Pivot Neurodiversity Founder John Marble and NeuroTribes author Steve Silberman on the history of autism, what we understand now, and where we go from here. This event was hosted and presented by Neurodiversity @ Square, in San Francisco,
and includes an enthusiastic Q & A.
Hello. My name is Chris Williams, and I’m autistic. Nice to meet you. I work for equity at a company called Square, and three years ago I started an organization for our workers there.
The Neurodiversity Community at Square is an Employee Resource Group founded on fault lines, on our mental and physical disorders and disabilities. We are building a house on these rocks to illuminate our differences and build a network of accommodation, support, and self-advocacy for our neurodivergent workers and their family members.
Ten years ago, I became a father to children with intellectual disabilities and high support needs. Children who took my hand and led me over the bridge of recognition, acceptance and love for our autistic identity. Love for the people we share it with. On this road I found giants: A pantheon of community elders the world over, fueled by dreams of justice, equality, and equity for people with all kinds of minds and bodies.
“Autism: A Vision of a More Equitable Future” is a tribute and platform for two of these heroes in our community: Steve Silberman and John Marble. This event is a love letter to the past and future of autistic people. I’m so thrilled we have this opportunity to share this night of joy and celebration with anyone who needs to receive it. I see you, and I love you. Thank you.
Hi, everyone. Thank you for coming tonight. My name is Mary, and I’m one of the co-leads of Neurodiversity at Square, Square’s second newest Employee Resource Group.
Our mission is to build an inclusive community for people who are neurodivergent, that is, with different cognition, who think differently, to empower them and help them make a difference at Square and in the world.
It is my immense honor to be introducing you to our two speakers tonight. We have award-winning and New York Times best-selling author Steve Silberman, most known for his book, NeuroTribes: The Legacy of Autism and the Future of Neurodiversity, which he’s going to be sharing a little bit about tonight.
We’ll also e-mail out a link to the book so those of you who haven’t had the pleasure of reading it can explore it.
I also have the honor of introducing you to John Marble, who is an incredible neurodiversity advocate, as well as a communications strategist, most notably of his seven years spent with the Obama administration.
Thank you so much for being here tonight. This is Neurodiversity at Square’s first event, and we couldn’t be more pleased to share this experience with all of you.
Please join me in welcoming our two speakers.
Hi everyone. I wanted to give you just kind of a little overview of what we’re going to do tonight.
I also mentioned to Mary and to Steve that I think I’m more nervous about this event than I’ve done any other event before.
But if you can’t be awkward at an event about autism where there’s autistic people in the audience, then where can you be awkward?
We’ve got kind of a wide variety of people here in the audience, that range from autistic people themselves to parents, to friends and colleagues who may not know anything about autism, so we’re going to try to give you a lot in a little bit of time.
So I thought that one of the things that we could do is start with Steve, who if you haven’t read NeuroTribes—you know if you’ve read NeuroTribes, because it’s one of those books that changes your life, and you tell other people that its changed your life, so hopefully if you haven’t read it, coming out of this event, you’ll be able to read it.
But Steve is probably the best person I know to kind of give an overview of our current understanding of autism, and where we’ve come from in our thinking, and where we are today.
So we’ll talk a little bit about the history of autism. Steve might talk a bit before we get into questions and answers between the two of us, to give you kind of a context of where we are.
Then we’ll talk about where we are today, and things that are happening in places like Square, and then we’ll talk about kind of what a vision for the future is for autistic people and their families.
So with that, I will sit down. Hopefully you can see me on this screen, let me know if anybody has difficulty seeing us on the screen.
And I’ll kind of just start with a basic question for Steve. You were a science technology writer, yet you ended up writing what is, people refer to (as) the Bible of our modern understanding of autism. How on earth did you decide to write about autism and go there from your previous career?
Well, I was—can everybody hear me? Is that okay in the back and all that?
I was a senior science writer for WIRED Magazine. Back in—well, starting in the mid 90’s—and in the year 2000, I was on a boat in Alaska with about more than a hundred computer programmers. The occasion was called a “Geek Cruise.”
It was somebody’s startup idea to have technology conferences in more interesting places than the Holiday Inn in Pittsburgh.
There were mostly PERL programmers on the boat. The star of the cruise was a guy named Larry Wall, who really invented PERL. If anybody remembers—I mean, I think PERL is still used—but it is a very eccentric language, in that it allowed for different individual interpretations of how best to do things.
In fact, sort of the motto of the PERL community, is: “There is more than one way to do it.” Which would be a good neurodiversity motto as well.
And so we’re going up through the Alaskan panhandle on this boat, and I asked Larry if I could interview him at his home in Silicon Valley, and he said, “Yeah, sure. I should tell you, we have a profoundly autistic daughter.”
And at that point, this was back in the year 2000. Autism was still considered rare. People talk now about the social model of disability versus the medical model.
There wasn’t much social model of autism back then, it was strictly a medical model. It was considered a medical condition. It was still considered very rare. People didn’t know much about it.
The vaccine stuff—which is all wrong—was just starting to get people really anxious at that point.
And so I didn’t really think much about Larry telling me that. I went to interview him. His daughter wasn’t there that day, but I did notice he had made these interesting sensory modifications to the environment of his house.
Like, he had swapped out the loud buzzer on his clothes dryer for a tiny lightbulb, but I didn’t know that much about autism yet, so I didn’t relate that to his daughter’s condition.
So that was that, I wrote a story about the Geek Cruise for WIRED. A few months later I’m doing a different story. I talk to the sister-in-law of the woman I was profiling, and I said, “Could I come and interview you at home?”
She said, “Yeah, sure. We have a profoundly autistic daughter.” And I thought, that’s odd. I thought autism was rare.
And I was telling that story to a friend of mine at my favorite cafe in San Francisco, and a woman at the next table said:
“I’m a special education teacher in Silicon Valley. There’s an epidemic of autism in Silicon Valley.” And so I thought, wow, really? Like I didn’t know nothing. You know? I didn’t know anything.
I was a science writer for WIRED. So I thought, well, I better look into that. Well, as I looked into that, I discovered that, even though everyone was telling me:
“Yes there is an epidemic of autism in Silicon Valley and it’s caused by wi-fi! Or too much screen time! Or—they didn’t have wi-fi yet, but you know—it was caused by electro-magnetic fields, or silicon in the water, or something like that.”
So the more that I looked at it, the more I’d seen that what was going on, was that people with autistic traits were finding a kind of safe haven in the technology industry, and they were also finding social opportunities that hadn’t existed before for people with autistic traits, and if people with autistic traits had kids, they might turn out to be diagnosably autistic.
So that’s what I wrote about in an article called “The Geek Syndrome”, which was the first mainstream press article to talk about people with autistic traits in high tech communities.
And then 9/11 happened. So I thought that the article would be completely forgotten. And instead what happened, was I got e-mail about it almost every week for about ten years.
And these e-mails were very, very intense and heart-wrenching. They were about very basic problems in accessing services. They were about, like, we’ve been waiting six months to get my son a diagnosis.
Or, if it was an autistic person writing me, they would say, “I was told I was a genius when I was young, but I’ve never been able to have a job because I can’t make it through a face-to-face interview.” Or, people didn’t have health care. Or, you know, just really, like, bread-and-butter, basic, intense, heartbreaking human problems.
Meanwhile, in that ten year period, the whole world was becoming obsessed with autism. But it was becoming obsessed with the question of whether or not vaccines cause autism.
And so, if there was an article in the paper, about autism, even if it had nothing to do with vaccines, the comments section online would be dominated by angry arguments about vaccines.
And I started to think: “Why is it, that the concerns of the people who think they’re concerned about autism—the mainstream media and whatnot, which seems all about vaccines—why is it that those concerns are so divorced from the real problems that the people on the front lines of autism—autistic people and their families—were facing day to day?”
I just had this intuition, kind of like a journalist’s intuition, that something had gone wrong in autism history so that the current conditions of an apparent drastic increase in diagnoses (that began in the early 90s), that there was something wrong with the way that was framed.
I just had, like, an intuition about it. And so, eventually, I decided to take a year off from WIRED to write a book about autism. That turned into five years... It became a complete obsession. And in fact, I never thought I would stop writing the book and neither did my publisher.
I’ll tell you an embarrassing thing. Here’s a really embarrassing thing.
I’m not really a tech guy, even though I write—wrote for WIRED and all that. So it was one long Word document. It was not until I saw the printed book itself that I realized how bloody long it is. It had just been a continuous column of text.
So anyway, that’s how I got interested in autism. And, as we’re gonna talk about…
Actually, you’ve mentioned in NeuroTribes that there was an early book I think called “The Silicon Valley Syndrome”?
Yeah, it was called [The] Silicon Syndrome.
I was wondering if you could, I always love to tell that story. I get it wrong, but I find it hilarious. I was wondering if you could tell a little bit about what you discovered with that book?
Sure. It turns out that there was a marriage and family therapist whose name was—her last name was Holland I believe—who wrote a book in the eighties called [The] Silicon Syndrome. Keep in mind, this was before the Asperger’s syndrome diagnosis had been formulated.
And in fact, something that most people don’t know—that’s very, very relevant to tonight—is that, you know, we might ask:
“Why hasn’t stuff about autism and employment, like, why isn’t that already taken care of? Why wasn’t that taken care of decades ago?”
What most people don’t know is that it was impossible for an adult to get an autism diagnosis until really, the early 90’s.
And in fact, I spoke to a guy named Ed Ritvo at UCLA, who came out with a paper in ‘86, I think, about autistic adults who got married and had kids and had jobs. And he told me that he was roundly mocked by his colleagues for even suggesting that autistic people—kids, then, always—could grow up to become adults who would want relationships and have jobs.
So “Silicon Syndrome” was about a bunch of guys in these early companies like HP and whatnot in Silicon Valley, who...
You know, this woman was a marriage and family therapist. These guys would—they tended to be very intensely focused on subjects of their personal interest. If problems came up in their relationships, as this therapist put it, they would seek knowledge like data, and it was literally like she was describing Asperger’s syndrome before there was a word for it.
I ended up calling her, while I was writing NeuroTribes. I said: “Do you realize you basically wrote a book about Asperger’s syndrome? That you could practically change the title, and not change another word in the book, really?”
My point is that people with autistic traits have been building the tech industry in and around Silicon Valley for decades, not just lately, and inclusion was already accomplished—if not intentionally and not with good accommodations—by people who found a place where their talents would be appreciated and that was here. And I think that’s really interesting.
I’m curious, how did you come to autism, how did you discover it in yourself?
Well, I was born.
So, I’m 42, and I’m of an age that most people my age were not diagnosed as kids. They were either misdiagnosed with other conditions, or institutionalized with other conditions.
Or in my case, I was fortunate that I went to a small school. The same fifteen kids I went to kindergarten with, I graduated with, and I was segregated into gifted classes. I came from a small community. So, my entire life, my family and I worked with doctors to figure out—I wouldn’t describe myself this way now—but “what was wrong with me.”
But we couldn’t quite figure out “what was wrong with me.” We just knew something was a little bit “wrong with me.”
I’ll tell you two quick stories. On Friday, I had coffee with a friend that I’ve known for 20 years, who used to be head of the White House Personnel Office.
(I used to work in the Obama Administration.) And it was probably about six years ago, I went to him, and I said, “Mark, I feel like I’m spinning out at work. I have been working with my doctors for the last three years to really dive into what’s wrong with me. I feel just like I’m doing good stuff but I feel like I’m drowning.”
And at the time, I had gone to my doctor, complaining, that, “Sometimes I just go deaf.” And he said, “Uh, that’s not a thing...”.
And I’m like, “Yeah… but sometimes I just can’t hear anything”.
And I didn’t know what that was, that it was actually sensory issues, and that everything was becoming a white noise, so for about two years I was going to a lot of hearing specialists.
And I actually talk to a lot of autistic people who grew up undiagnosed who have similar experiences with hearing tests at school. Where people say, “Well, you’re technically getting this right, but in the wrong way. Like, you would hear the sound ten seconds afterwards, or you wouldn’t respond to it.”
So I went to Mark, and I said, “You know, I need help.” At that time, working with my doctors, I had kind of seen the diagnosis on the horizon, and I was resisting it.
I was like, no, no, no, no, no. No, no, no, no. That is not me. No, no, no, no. But I kind of knew, right?
So Mark said, “You know what, I have this friend, Ari Ne’eman, who you should meet for coffee.”
Who at the time—Ari is autistic, he was serving on a government body for the White House, running the Autistic Self Advocacy Network. He had me connect with him. We had coffee, and looking back, I realize that Ari was totally setting me up.
Instead of meeting him in his office, he had me meet him at the Starbucks across the street from his office, which was near the GW—George Washington University campus in DC—which is probably one of the busiest Starbucks in DC, and very, very noisy.
So after about ten minutes of me just not being able to think and me not being able to process anything, Ari just very calmly said:
“You know John, I see you’re having a little bit of difficulty...”
“Why don’t we go back to my office, it’s much quieter there.”
[Nodding] I know just how he would say that, yeah.
And so we went back to his office. I asked him questions... And one of my greatest frustrations at the time, was—autistic people tend to like certainty in things. I kinda knew this diagnosis was coming, but resisting it, but I had to know one way or the other.
However, today it is still extremely difficult to be diagnosed as an adult. If you do find doctors who diagnose adults, most of them don’t take insurance.
So at a minimum, it costs about $5,000 dollars, depending on where you are, and even a lot of them don’t really know a lot about autism. They kind of think they do, or they think they know what they think they know about kids, so it was just like another year of trying to find this diagnosis.
And Ari said, “John, I understand that you probably want certainty, so I totally get if you need a piece of paper,” and I’m like:
“Yes, just one way or the other, let me know.” But he said, “You know, we also have this thing, that autistics tend to diagnose each other.”
He said, “There’s a monthly meetup at this coffee shop—after the coffee shop was closed, quiet, at night.” He said, “Why don’t you just go and see what you see?” So I went.
I sat down, and I remember seeing this really cute boy. Sat down next to him, and he just looks at me and says:
“Wouldn’t you agree that Benjamin Franklin was the greatest of our founding fathers? And wouldn’t you agree that his discovery of lightning and the lightning rod was one of the greatest achievements in American history? And wouldn’t you agree that Blade Runner was one of the best movies of the 20th century?”
I said, “I remember I liked Blade Runner. I can’t remember. I think I saw it in the theater, I’m getting the date wrong.”
But he’s like, “Well if you saw it in the theater, it would be between June 1984 and September of 1984,” so I was a little bit taken aback.
But during this meeting I started to see, you know, people who kind of look liked me. There were lawyers at the Department of Justice. There was a guy who was a marine.
And afterwards, one of them pulled me aside, and said, “Oh, I see you met James. I can see if maybe you were a little flustered the first time you met James.” I’m like, “He seems nice, but a little bit.”
She introduced me to James, and then for about an hour after this official meeting we just stood on the sidewalk where I got to ask questions for an hour.
I’m like, “So like, I do this—that’s not an autistic thing, is it?
They were like, “John, non-autistic people don’t do that.
And it was just like, one thing after the other. And during that period, before I got my diagnosis, they invited me to a retreat that was autistics only.
And it was the first time I had been in a space that was just autistic people. There were parents, there were autistic parents with their kids. There were non-verbal people. There were people with Down syndrome. There were people who looked a lot like me. And people who looked nothing like me, and communicated nothing like me.
And I just remember crying the first time I talked to a non-verbal autistic person who used an iPad, and realizing that the world may see us differently, but there was a shared connection between us.
And that was one of the most powerful moments of my life. And that blossomed into meeting autistic people with other intellectual disabilities, autistic people with down syndrome, and kind of just seeing that thread extend.
And seeing that autistic people might be different. I always liken it to the French. I say:
“There’s about 60 million people in France. No two French people are alike. You know, a gay fashion designer in Paris is going to be a lot different than a Catholic nun in Bordeaux, but they still understand each other as French. There’s a shared experience that they get that an American will never get.” So that’s how I kind of found myself in this world of autism.
It’s funny looking back. I have a friend who has three kids, including a 13 year old non-verbal autistic son with pretty high support needs. And we just laugh, looking back at kindergarten, and looking from kindergarten to when we graduated high school, just all the classical autistic traits that they’re like, “Oh, if we only knew then.”
Absolutely. I was going to say, Ari Ne’eman had a profound effect on my life too. He’s sort of the puppet master arranging all these things.
The best thing that I did for the book—well after I’d started writing it—was to go to Autreat. Was that the event that you went to, that was just autistics only?
It wasn’t. It was just, there’s a coffee shop called Teaism, and it was just a Sunday night after Teaism closed. But I remember, actually. You wrote in NeuroTribes—I think I’m remembering this right—about Autreat, and you kind of being surprised by the humor that you find there.
Yeah. That was, well—Ari was right to send me to Autreat first, before I really had even gotten that into the subject. I had been collecting data about autism ever since “Geek Syndrome” came out, so at the time that it came out people asked me if I wanted to write a book, but I felt like it was too early, sort of.
So I had been collecting a lot of data, but most of it was from medical journals, and within the medical model. And so Ari said:
“Why don’t you just go to Autreat and see autistic people on their own turf, on their own terms, with each other?” And it occurred to me, I had only seen autistic people in relatively artificial and stressful situations. I had seen them in clinics. I had seen them with their parents. Getting diagnosed.
And so, I remember being in the Buffalo, New York bus station, where I was supposed to look for the vans that were leaving for Autreat. So I thought, “Okay. I’m supposed to look for a group of autistic people. What does that look like?”
Well, it turned out, they were the people having the absolutely best time in the Buffalo bus station. They were like laughing, and so happy to see each other and all this.
We went up to this campus, where Autreat was going to be. I had a very odd feeling that I hadn’t had since high school, which was:
“Okay. I’m not like the people around me. I’m neurotypical, but I’m scared to ‘come out’ as neurotypical, because then they won’t like me.” And so I had these anxieties that I hadn’t had since...
FRANCIE (From Audience):
I like you!
Well, thank you. Thank you...
So, I get to Autreat and the best thing about it was that it was like a mental shower that washed away all the stigma and stereotypes that I had inherited from the medical world.
So, like, I had been told: “Well, autistic people don’t get humor. They do not understand satire.” And one of the first things that happened was Ari, that guy, had just been appointed to the national council on disability by Obama, and he was able to take his seat.
And so when he came to Autreat, he was sort of welcomed as a homecoming hero, in a way. And so he walks into the room, and a woman at the back of the room said, “We love you Ari! If we were capable of feeling such an emotion!”
So, you know, it was really a very good training in un-making assumptions about autistic people.
And when I got back to my desk in San Francisco, I literally remember the moment where I’m like, writing the usual B.S., you know: “Difficulty making eye contact…” What the f--k?”
They’re not like that. I was just with them. In fact, the funny thing about being at Autreat was, for one thing, everybody was just encouraged to just do whatever they wanted to do to make them feel comfortable. So if they wanted to stim, why not?
One of the most beautiful things I saw was a couple, who had gotten married at Autreat the year before, stimming together, holding hands, which was so beautiful.
It gave me a sense of freedom that I had not had, even as a neurotypical. And when I came out of Autreat it was actually kind of hard to re-acculturate to neurotypical society. It was like everybody was these loud, egotistical, toxically masculine people.
That was the best thing for the whole book, I would say.
There’s two things about the medical model and stimming I want to tease out.
But first, it always frustrates me that Ari was the first openly autistic Presidential appointee. I like to make the point to Ari that I was technically a presidential appointee before him, I just wasn’t open, so I wish I would have been, but he’ll forever have beat me to that.
You mention humor and autistic people, which is so a misnomer, that autistic people don’t have humor.
Meanwhile, Hannah Gadsby, who had the “Nanette” special on Netflix, is autistic. She’s got five sold out shows at the Palace of Fine Arts in San Francisco coming up, that I was not able to get a ticket to. And most autistic people were not able to get a ticket to. Probably on Stubhub. We’ll be okay. Because it sold out, because she’s so well known for her humor.
I can tell you, my friends and I, produce a comedy festival in DC every year. And I don’t know if comedians are autistic. I’ve come to believe comedians are their own sub-neurotype, if they are not autistic. But there’s a lot of autistic people in comedy.
Steve, I had mentioned “the medical model”. I know we have kind of a mixed group here, so we might be saying things like “medical model” that you’re unfamiliar with.
The medical model of disabilities—correct me if I’m wrong, but—(is) the assumption that disabled people / autistic people are deficient versions of what a human should be.
Whereas the social model of disability says that autistic people / disabled people are perfectly normal as they are, they might just be different.
And most of the disabilities, although we might have medical issues, come from the disconnect between us and the society that we live in that is radically designed for one group of people but not for other groups of people.
And Steve also mentioned stimming. For those who are unfamiliar, stimming is something that autistic people tend to need to do, to regulate our bodies, our emotions.
That can be anything from flapping your hands as a kid, to rocking your body back and forth, to using fidget toys. (We do have some fidget toys outside if anybody needs them.) To playing with a bracelet...
But the truth is that all humans stim. Self stimulation as a way to regulate ourselves.
If you’ve ever sat in a meeting—if you’re not autistic, and have ever sat in a meeting, and kind of doodled, or tapped your knee, or twirled with your hair... That’s stimming.
I love to say that everybody stims at a Beyoncé show. And what I mean by that is that, if you’re ever at a concert, just look around. If people are up and dancing, or putting their hands in the air, that’s stimming. That is people reacting to either sensory input—or in Beyoncé’s case, emotional input—that you’re receiving.
Our previous thinking about autistic kids is, through a lot of therapies autistic kids were told not to stim. Trained not to stim.
And I always say, imagine being at your favorite concert and everybody’s dancing, but you have to stand perfectly still and aren’t allowed to move. That’s what it feels like when people aren’t able to stim.
Just one thing… to kind of… Please, cut me off when you need to...
By the way, autistic people, a lot of times, tend to be curt. Maybe they’ll give you a one word answer. Or we can tend to be verbose. (I tend to be verbose.) So always feel free to cut me off.
But one thing I wanted to mention about: That story about Autreat that’s always stuck with me is just the way that autistic people are around each other are not necessarily the way that autistic people are around other people. I’ll give you an example if that’s okay.
There’s a wonderful organization in San Francisco called AASCEND, which is a group of autistic adults, as well as parents that get together for a variety of things. One of those things is that they have a monthly television show.
I remember going for a taping of the television show, and autistic people having a bit more difficulty in speech and communication and different things, like we always do. And then, once the perfectly lovely non-autistic people left, it was like a complete switch.
Like our communication changed. The way we acted around each other changed. And it’s hard for me to kind of explain that to people, unless they’re friends who happen to be people of color, who have to code switch in society a lot.
Also, dare I say: Gay people.
Oh and gay people, certainly gay people.
John and I are both gay, and one of the things... It’s a coincidence, but, one of the things I want to point out is that I think that, at least in my life, that that really impacted the way that I looked at autism.
Because when I was in high school, homosexuality was still within the medical model. It was considered a mental disorder in the bible of psychiatry, the Diagnostic and Statistical Manual of Mental Disorders.
I could have been put in an institution for the feelings I was having for my best friend in high school.
So I already knew what it was like, to have an identity that was trapped behind enemy lines, you could say. By a vision of my identity as pathological.
So when I started looking at autism, and particularly once I saw autistic culture, which I did see a very early glimpse of when I was writing “Geek Syndrome.” Because here I am writing about this disorder, and I suddenly come across a website called the “Institute for the Study of the Neurologically Typical,” which was designed by an autistic person.
And it turned the medicalizing lens around on the doctors and so it described neurotypicality—i.e., being not-autistic—as “unfortunately there’s no cure for this.” you know? So I thought, wow, that’s kind of cheeky, you now?
I think that one of the things that allowed me to be an early adopter of the concept of neurodiversity was that I was gay, even though gayness is—should gayness be a form of neurodiversity? It’s actually a really heavy question.
How did—Did coming out as gay to yourself help you come out as autistic to yourself?
Oh, very much so. It’s so funny that the same arc that I traveled in coming out as autistic I traveled as coming out as gay.
Going from deep shame to resistance to thinking, “Well, I’m not like those autistics.”
You know, “I’m not like those gay people. Maybe I’m a little, you know, autistic-curious, but not like…”
But traveling that same road, to, finally, acceptance of who I was—even to the point that when I finally accepted myself, I’ve gotta hit my hand to say:
“John, remember you don’t have to get so excited. Remember when you came out as gay? And you were so excited that you joined a militant lesbian group? And protested? And you were the token gay boy in the group?”
My initial reaction to seeing the disparity in funding and the misuse of funds by autism organizations was to protest, march. So I did have that experience kind of shadow me to say:
“You know, you have a bigger perspective. Strategize about this. Think about how you can change the system.”
But I’m so thankful that I went through the arc of coming out as gay before I came out as autistic, because it just served as a template to helping me accept who I was.
That’s great. And I’m very, very happy that we are talking to a neurodiversity group at Square. It is so wonderful that groups like this are starting to sprout up both at companies and at colleges.
And as I say, “Why didn’t they, why haven’t they existed for eighty years now?” Well, it’s because the concept of autistic adults is still relatively new.
But I wanted to ask you, because you’re really sort of on the ground with companies as they try to work out ways of making the appropriate accommodations for neurodivergent people. What are the biggest challenges, do you think, for companies that want to do the right thing and hire neurodivergent employees?
I would say: Understanding and acceptance. I remember when Square—I could be getting this wrong—but when Square said, “Hey, we’re thinking about doing this Neurodiversity Employee Resource Group. What companies do this really well?”
And I had to say: “Ummm, you’re kind of the first to do it this way.” Which is a very exciting thing.
Every time I go to speak at a company, you know I do trainings on autism at work, on neurodiversity…
Every time I go to speak to a company, I always have a manager who pulls me aside. And they just say the same thing.
They just say, “So….”
They always say, “So….”
And I can fill in what they’re going to say.
They say, “So…”
And I say, “You think you have employees who might be autistic or otherwise neurodiverse. You don’t know if they know. You don’t know if they know you know. But there’s some problems there and you’re fearful about losing them.
And they’re like, “Yes. How do we keep them? We want to keep these people.”
And what it really is, is that not just companies, but society in general, doesn’t really understand what autism is or who autistic people are.
And they don’t realize that autistic people are everywhere. The current statistic is 1 in 59. The American Society in Pediatrics argues it’s 1 in 33 people are autistic, that we’re everywhere. And so that employees are drowning at work, or they’re succeeding at work with great effort.
So the more that we can, not only educate. There’s a certain burnout that autistic people have in “awareness”, when Autism Awareness month comes around.
But if we can accept autistic people, if we can understand them, and really if we can understand autistic people as normal, but a different type of normal than what they’re used to, is really what will move the needle.
The problem that I see is that for too long autistic children have been just taught what they should do to fit in a neurotypical mold, instead of being taught who they are as autistic people, and who neurotypical people are as a neurotypical people, and how to appreciate both and build translations between the two.
Well, one of the things that I think is so important about people like you appearing in public and addressing different kinds of groups is that young autistic people need role models of successful autistic lives.
And one of the things that I talk about, you know, people who don’t know that much about autism think: “Well aren’t we spending millions of dollars a year researching autism anyway? Like really? Does it need more attention than that?”
Check this out. In 2014–2015, thirty two percent of the research on autism was on genetics. So basically, you know I mean, some of that is useful. It’s not all designed to prevent future autistic people from being born.
But, two percent of the research spending was on how to improve the lives of autistic adults. So-called life-span issues. There’s something really wrong with that. And that has been how things have been. We’ve spent billions of dollars, actually, on autism research. And it’s been, like, a full employment plan for academic geneticists, basically.
And we still don’t know, this is really shocking, we still don’t know how many autistic adults are out there in America struggling to get by with no support because a major national survey has never been done.
And check this out. Even though you hear constantly—particularly this month, sadly—about “autism tsunami,” you know, if they don’t use the word—“epidemic,” has kind of become passé, but you know—“autism tsunami...”, the “waves of autism…”
Well, a survey of adults was done in England several years ago by a guy named Terry Brugha. And what he found by going out into the community (and it is a smaller country, so it was more easy to do), but what he found was that:
The incidence of autism among adults was exactly the same as it was among kids. If there’s a “tsunami,” that wouldn’t be true. There would be many more autistic kids than there are autistic adults.
What there were a lot of was undiagnosed autistic adults. So what we have is a society full of people who don’t even know they’re autistic. Who don’t know why they’re having problems at work, or why loud spaces are so oppressive to them. They’ve been struggling all their lives.
Until we even find out, we shouldn’t be talking about “Autism tsunamis” until we even find out how many undiagnosed autistic adults are out there, struggling to get by.
One of the things that has become true after writing my book is that, now I have, you were talking about how autistic people diagnose each other. I now, also, have a bit of “aut-dar” you might say.
And so occasionally, I meet people and it’s like, I think to myself, I know why you’re struggling. But it’s a little too heavy for me to… I have actually said to a couple people, “Well, you might consider that you have autistic traits. You know?”
But society is still profoundly ignorant about how many autistic people are already living with us, all around us. Participating in society. Pushing forward science, art, and culture.
And by the way: autistic people are not all tech geeks. There are some autistic people who don’t even want to work here. (I’m sure this is a really great place to work…) But we have to broaden our conception of what autistic people are good at and are interested in and are capable of.
There’s a wonderful YouTuber named Rian Phin, who’s a fashion YouTuber. Mill—I don’t even know if she’s millennial. Very young woman, black woman. I watched her coming out video on her YouTube page.
And I couldn’t understand it. Just because it was just in young-person speak, that I couldn’t…
She’s like: “So… I’m hella autistic. And you probably don’t know what that means. And people always say, ‘Well you don’t look autistic.’” And she says, “How many people like me, a young black woman, have you seen in the media?”
Our perception of autism is kind of one demographic, and kind of one sub-type. I was working on a web page yesterday where I was pulling quotes from autistic people about autism, and I got about twenty people, and I was proud of myself, I saved it, and after I saved it I thought, “Oh. I forgot to include any white men on it.”
But at that point, I’m like, eh. We’ve been over-represented a lot. But the diversity in people who are autistic is as diverse as the rest of the population. And a lot of times, people don’t realize that.
The shrinking from the 1-in-69 number to the 1-in-59 people are autistic number had a lot to do with reducing the diagnostic disparity among people of color, in women, in girls.
Unfortunately, people of color and women and girls still face barriers to being diagnosed, and doctors still don’t know how to recognize traits in people who are beyond what their template before them is.
Yeah, and in fact, you know those numbers that quickly attain iconic status, in part because organizations like Autism Speaks use them to create fear: “Now it’s 1 in 59! Had enough?”
Those numbers are complete kluges. One of the data sources, I once looked to see: “Okay, where is the incidence of autism like, the lowest?”
Well it was lowest among poor Hispanic families in Florida. Why? Because there’s some genetic, protective factor? No. They don’t have health care. They don’t have access to diagnosis.
Really it’s only under the lens of neurodiversity that stuff like diagnostic disparity for people of color becomes visible.
One of the things that I write about in NeuroTribes, is that the guy who really became the world’s leading authority on autism for most of the 20th century, a guy named Leo Kanner, he believed that autism was more prevalent in upper middle class, white, academic, yuppie aspiring families.
Well, what was more prevalent among upper middle class, white, aspiring families was having access to Leo Kanner’s office. Basically.
So there’s been a lot of social distortion, you could say, of how many autistic people are out there. What autistic people are like. And it’s really good that we’re now starting to use those lenses.
I want to ask you. If you could reinvent the world, really, in the next six months, so that it was a better place for autistic people to live, what would you do?
I would center autistic people at the conversations about autism. Most autism organizations in the United States do not have autistic people on their board. They do not have autistic staff members. Most services and for-profit agencies do not have autistic people designing their services, or autistic owners. Most curriculum is not designed with the input of autistic people.
Most—thank you to Apple for putting out a list of helpful autism apps. Because they reached out to the autistic community. Because most tech solutions for autistic people are pure junk. And the reason is, is because nobody asked the damn autistic people what’s going on.
I go through this fluctuation of, you know, I will work with autism organizations. And I will be nice and supportive. But at some point, I’m like, it’s 2019. Where are the autistic people?
I’m kind of done with supporting autism organizations that don’t represent us. And that’s not an egotistical thing. Although it is an ethical thing: That all communities deserve to speak for themselves and to center themselves.
But I’m also a design geek that believes in effective outcomes. So when you have the people who control the money, who control the science research, who control the services... Designing solutions without us is always going to be wrong.
And autistic people tend to be economically disadvantaged. We don’t have the resources. We don’t have the power to actually have these solutions.
And as much as it frustrates me to see that as an autistic person, I am in Facebook groups of parents of autistic kids. And I have friends who are not autistic who have autistic kids.
And I am heartbroken because they are so frustrated at the lack of solutions. By hundreds of millions of dollars being spent in our name.
But nobody helps a parent when their kid is diagnosed, right? Like, your kid’s diagnosed, you’ve got—it’s this mountain of conflicting scientific research. Nobody’s really there to hold your hand. To say, “This is what it means.”
Except for like, “Well this is maybe how we can fix your kid.”
But imagine if we centered autistic people in designing solutions for us. That would be designing solutions for parents.
I am incredibly passionate about connecting autistic adults with parents of autistic kids. I always say, one of the most wonderful things in life is being friends with parents who have autistic kids.
First of all, it helps me understand what my parents went through. It makes me want to buy y’all big boxes of wine and passes to the day spa, because we know if you’re not us we can be a lot.
But I feel so privileged that with a lot of my friends, I feel like a translator between the two. A couple of my friends think I’m some secret autism whisperer, and I’m like:
No, I just relate to you as an adult, as my friend, and I relate to your kid as an autistic person. I will probably pick up things. Even if your kid is non-verbal and has high support needs, I’m like, “Whew, I get you, kid!”
Like help me, I’ll translate this for your parent.
Yeah, I saw that actually, courtesy of Shannon. Where are you Shannon? Hi! One of the most beautiful days of research for NeuroTribes.
I went to see a music lesson by a teacher named Steven Shore. And Shannon’s son Leo does not have many expressive words. But they got each other, and it was a really beautiful afternoon seeing them work together.
Because Steven understood stuff about Leo that didn’t have to be said. He just like, felt it. And he was able to adapt his teaching to what Leo could handle. Am I right?
SHANNON (From Audience):
Yeah, you are right. And John, if you don’t mind me saying, when John and Leo first met. My son Leo’s a teenager, he’s eighteen years old. High support, one-to-one dude, he’s awesome. He’s not here. This is not his thing.
But Leo was doing some behaviors, some autistic behaviors, and John looked at him and he’s like: “I do that!”
Like, he’d never seen another autistic person doing that before. And I was like, “Well, yeah!”
It’s funny. Not only do my friends learn things about their kids from hanging out with me. But I constantly learn that things I’ve done my whole life, I’m like—Oh, I didn’t realize that was autistic until I saw it in their kid.
And Shannon—do you remember when or something. I thought that was really awesome…
SHANNON (From Audience):
So yeah. John is absolutely right about needing autistic interpreters. Because I don’t have an autism diagnosis. So a lot of the times, as a parent, you look at the things your kids are doing and you’re like:
“I have no idea what you’re doing. Why are you doing that?” And if you consult with somebody who is an autism professional, a lot of times they’ll try and come up with a non-autistic reason or rationale for that.
So I had put a video up of my son, who was a young kid at the time, and he was running around the inside of a merry-go-round like structure, and I was like, he sounds like, he looks like he’s having a great time but I don’t know why he’s doing this.
And my friend Zoe commented, she said, “Oh that is the best, because if you get running around, you get the centrifugal force in your head and it’s just the most amazing sensation!”
That totally makes sense and there’s no way I would’ve guessed that if you hadn’t told me, so thank you.
I was telling Shannon, that Leo and I look nothing—well we actually do look a little bit alike. Oh, thank you. But for non-autistic people, we don’t act the same, and they would look at the two us and think that we’re totally two different types of autistic people.
But I told Shannon, that, you know, that there’s lots of types of autistic people, but like, I love meeting people who are kind of my type of autistic person. And even though Leo and I appear completely different, we are like really, really similar.
My friend Dustin is here as well. Who is autistic, and who is a music teacher, and who works with autistic kids. If you want to stand up, you can stand up, but I don’t want to put you on the spot. (Sometimes we have trouble with the spotlight.) But like, why aren’t we funding that?
Francie, who’s here. So I’ve been working with autistic people to launch a new business, but we’ve also been talking about an associated non-profit. And we were thinking about the things we could do with the non-profit, and Francie said this, and one other person said this, her immediate reaction was:
“Oh! Could you imagine what we could do for parents?” It wasn’t even about us. It was about helping parents.
I always say, that becoming, accepting yourself as autistic, isn’t about saying: “Oh my life is wonderful and there’s not challenges.”
It’s accepting and loving yourself for who you are. And once you do that, you start to see disparities all over the place, and it not only makes you passionate about fixing them for yourself, but fixing them for parents as well.
And I know we have about, in the formal discussion, we have about ten more minutes, and then we’ll do some questions and answers.
But I was wondering if we could talk about employment a little bit, since we are here at Square. I’m realizing I did not formulate a question, but I do want to talk about that. I don’t know where to start with that.
Well, I feel like you’re the expert.
That was not a set up. I really blanked out right now.
Well, I think that one of the most important things for young autistic people to know is that they can have a viable future. And that they will be able to support themselves. Not all autistic people will ever be able to support themselves. But some will. That’s why I think mentoring is so important. And mentoring within companies is so important too.
I spoke to a bunch of people who worked in Silicon Valley before the adult autism diagnosis was formulated. Who said that there was kind of an understanding between senior engineers and junior engineers, that they would put up with each other’s eccentricities which now seem autistic in some ways.
In fact, I had a hilarious conversation with a guy at the United Nations on World Autism Day a couple years ago. He told me, he had just gotten a diagnosis, and he was seventy. And I said:
“What did people think you were, before you got a diagnosis?” And he said, “An engineer.”
So within engineering—and within ham radio, by the way, which I have a whole chapter on ham radio. Ham radio was another natural haven for autistic people before the invention—it was like the internet before the internet.
Two years ago, Anthony Hopkins disclosed that he was autistic, and that he was diagnosed in his seventies. And he made the remark of, “The things he would have done differently, and how he would have handled his life differently, had he known before.”
I had a follow up to that, sorry, I’m re-forming my thought. I’m always very careful when I talk to parents, because I want to show them examples of autistic people who are successful, but I also have to clarify that not all autistic people are the same.
I’ve felt very fortunate in my career, that I’ve always kind of, I’ve felt like I’ve been on a tightwire, and one little misstep, and you know, everything would have crashed.
And most autistic people, I don’t think are that fortunate. But I firmly believe that, whoever autistic people are, their lives could be in a better state today than what they currently are.
And that includes people who are high support needs, and who may never live on their own, or people who can be integrated into the workplace and have families on their own. No matter who you are, if you’re autistic, if we had better priorities, our lives would be a lot better.
I had one event happen in my career, that really kind of led me to why I’m here today. I mentioned getting coffee with that first White House official, who set me up with Ari Ne’eman.
A few years later after I was diagnosed, I had gotten to the point at work that I needed an accommodation. I had always made my own accommodations at work, but it got to the point that I couldn’t quite figure this out, and I needed to ask my manager for an accommodation.
So, the head of White House personnel at the time invited me to lunch in the White House mess. Which is a great honor, it’s for the senior staff, who gets to eat there right next to the Situation Room. So if you’re not one of those staffers, it usually means that if the head of White House personnel invites you to lunch at the White House mess, you’re either getting a promotion or you’re getting fired. It’s a nice way of seeing you out the door.
It turned out I was not getting fired, I wasn’t getting a promotion either, but he just wanted to catch up. And we’re talking and I said:
“Dave, I’ve gotta tell you something that up until this point, I’ve only—only my parents know, and I’ve told my—and my doctor knows, and I’ve told my best friend. But, I am autistic, and I just need a little bit of help navigating and accommodation.”
And it grew dead silent. And it was probably like a quarter of a second, but it felt like ten minutes for me. I thought I was going to lose my security clearance. I thought I was going to lose my job. And you have to remember, as a presidential appointee, especially if you have a sensitive job, you’re kind of under the microscope.
There were times that I would get asked out on dates, and I would have to go to the ethics office to see if I could go on that date, in case there was a conflict of interest. I couldn’t put things on Facebook, or I might get fired. Your life is under the microscope, and I thought, certainly this is going to disqualify me from government service.
And his answer changed my life and really led me to why I’m here. He said, “John, that’s fantastic.” And I gave him what I assume is the most confused look I ever had, I said, “Dave, what do you mean?”
He said, “John, I’ve known you for what, fifteen years? We’ve worked together before. You look at things differently. You’re definitely an odd guy.” We knew each other well enough that he could say, “You’re a little weird.” And I’m like, “Yeah, I am.”
He said, “But did you ever think that your autism was a benefit to you and your career?” And I said, “No.” Cause I hadn’t.
He said, “John, think about it. My job...” (He was deputy director of White House personnel) “...is to go out in America and find people to build the teams for the White House to accomplish big things.”
“So I’m looking for people who are different than the norm. Whether that’s, you know, from a different ethnic background, or geographic background, or educational or work background, or disability background… I need people looking at things from different perspectives.”
And from that moment on, it changed my career. I started leaning into being autistic.
I became known as the guy who would get pulled into the room when they’re figuring out how to prevent Ebola from coming over. Or how to respond to a cyberattack from another government. Or how to speed up the TSA lines. Now I don’t have a background in public health, or cybersecurity, or any of those things. But what I had was a different perspective.
And I realized that I could stand in confidence of who I was, and really lean into that. And so now I see people in the workplaces who might be struggling, and their employees have no idea how valuable they are.
One of my friends is here, hopefully won’t mind me sharing this. But my friend Ian said something so profound to me one time as he was looking for work. By the way, he’s looking for work. He’s brilliant with data and communication. If you’re hiring, please talk to me because I want to connect you with this wonderful guy.
Ian said to me something so profound, he said, “John, it frustrates me because I know how to do a job. But the skills that you need to do a job successfully are not the skills you need to get a job, and that’s where I struggle.”
And I said, “Me too!” And pretty much all autistic people. The truth is, is that the hiring process is not designed for us. If you have an auditory delay on a telephone screener, if the screener asks you a question and it’s like 20 seconds of silence, they’re going to move on to the next person.
The retention systems aren’t designed for us. The culture isn’t designed for us.
So I’ve been working with this wonderful training program called Neurodiversity Pathways, to train autistic people for tech. But every time I go to a company, I realize that there’s an ecosystem there that’s not quite ready for us.
So I’ve been working with a group of autistic people to form a company. We’re calling it Pivot, Pivot Neurodiversity, to think about how do we build the engines that are needed to hire and support autistic people.
And there are some wonderful things that have been happening. Microsoft, EY, SAP have been doing these autism hiring programs, which are great, right?
But it invests a lot of time to educate a company about autism, then educate them about neurodiversity, which is all about the variations in human thinking, and to sell them on this idea, and to have them build a program, and to have them spend a lot of money.
Meanwhile all of these companies have employees that are struggling—or even if they’re not struggling, could be doing better with better support. So we’re figuring, well maybe we should just start working with these companies to help support these employees.
And it goes back to the priority—I’m trying to pull this back from a commercial—but it goes to the passion of priorities of autism organizations not focusing on things like this. And I’m like, you know what? We’re going to have to do it our damn selves.
And why not show these organizations that we can be successful? And we can help companies? And why not do it in Silicon Valley? And I tell you, I have friends who have kids who are autistic who are 5, who live in Ohio, who live in New York, and like, they’re looking at what we’re doing, because they’re like “I have to think about this in 15 years.”
And if you’re not autistic, you might not realize that only 14% of autistic people, adults, have had any sort of paid work in the community in the last year.
That number has not moved in at least 15 years, despite hundreds of millions of dollars spent.
So… we think we know what the prescription is? We’re trying to figure out how to work together and trying to figure out the business language. But, that’s just our particular lane. There’s all sorts of lanes that can be improved by centering autistic people in those conversations.
And, I, you looked like you had one more thing to say.
Well, I just wanted to, it was just a transition into Q&A… but I sort of wanted to have, wanted to ask Chris?
So I wanted to share one more thing, this slide, I don’t know if we have it, and then wanted to bring up Chris.
So I was talking about kind of the lane that I’m doing with this new company that I’m forming, but there are some other wonderful things that are happening in the Bay Area that I want to share as well.
If we can get up a slide, I’ll show you those logos. Looks like—? Yeah. I’ll show you those logos. It’s just a few things that, for whatever reason, the ecosystem here is causing these things to happen.
So just a few companies in the—not companies, organizations in the Bay Area that I wanted to mention. I don’t really see this happening in other parts of the country. So I think it’s such a unique privilege and gift that things are happening here.
The first one, my friend Dustin, who I introduced before, started a group called the Bay Area Queer Autistics. It’s a group of LGBT+ autistic people who just get together to hang out.
Surprisingly, probably half women or non-binary or trans people, probably half parents—autistic people who happen to be parents. And for the first time in my life I can actually go out to gay clubs, and kinda see autistic people, as loud as they are, just be like “Whoo, you see those lights in that other room?” It’s like, “Yeah, couldn’t handle them.” And it’s like such a wonderful thing. I think that’s wonderful.
The next thing is something called Spectrum Queer Media, which, I liked them on Facebook, cause I thought it was an autistic, maybe an LGBT autistic thing. Turns out it wasn’t. What it IS is this vibrant online and in-person community for LGBT people of color, especially LGBT black people and Hispanic people.
And I reached out to the organizer just to say, you know, “Hey, I like this, is it okay? I’m not a person of color but I love your content, can I still follow this?” And she’s like, “Yes.” And I said “I’m just curious about that name.” And she said “Oh, um, I’m autistic.” So I thought that was a nice nod.
So here is a community that’s not about autistic people, but the person—her name’s Kin Folkz—that’s organizing it, is a black autistic woman, who’s organizing among people of color here in the Bay Area.
The next one is The Neurodiversity Project, by Jenara Nerenberg, who is a journalist, who I believe identifies as autistic—and other neurodivergence, who puts on events for autistic people and non-autistic people.
I actually went to one that you [Steve] were the speaker, the introducer for Oliver Sacks’ husband, and I remember going with some autistic people thinking that it was an autistic event, and realizing that we were the only autistic people there. But we were volunteering to put it on…?
But I realized—oh, no. Like, some of these events are just autistic people putting on interesting things for other people. And that felt really nice.
The Autistic Women’s Alliance up there, is an organization that’s coming online right now to support autistic women, especially in tech. Professional autistic women.
It’s being organized by Carrie Hall of SAP, who couldn’t be here tonight, because she’s in the hospital. But doing wonderful work, also working with Cassandra, who’s here. And Paulette, who—I always forget Paulette’s name—who works at Google, and is autistic, and is an opera singer as well.
Oh yeah, she’s amazing, actually, yeah.
Yeah, and there’s a lot of amazing autistic women, that are finding each other through this budding alliance.
And then below that, is um, oh God, I’ve said this a thousand times… “Excellence 2 Infinity”...?
CASSANDRA (From Audience):
Exceptional 2 Infinity.
Exceptional 2 Infinity. Cassandra here—would you mind standing up? Cassandra here, who is not only autistic, but is a mom, and is an artist, and has started this wonderful effort, not only a business of hers to sell her art, but to encourage the autistic—wait, encourage the ARTISTIC endeavors of AUTISTIC people and other people as well.
I joke that I moved to San Francisco and joined an art collective, but that’s what she got me to do. And now I’m actually making art. And those are just some of the things. And I don’t see that really happening in a lot of other places. But for whatever reason, kind of like that “Silicon Valley syndrome”, um, the ecosystem here is creating that.
And of course, Francie, who’s here, who runs—owns Lullaby Links, which is an indestructible, gorgeous—
FRANCIE (From Audience):
I’m gonna get there, too. (Francie laughs) But she started Lullaby Links, which is kind of an indestructible, wearable, beautiful necklaces, especially for parents, who always have kids pulling at their jewelry.
She’s also started a secondary business, called Fancy Fidget, which is all about stim jewelry that you can wear to stim.
So I mentioned the company I’m starting is kind of my lane, but there’s all these other lanes that are happening too.
And one of the most wonderful things about the autistic community is we tend to kind of be diverse and intersectional and making sure that we’re supporting everybody else.
And, like, autistic people have walked off panels if it’s all white people, or all men, and been like “Let’s reposition this.” Because when you’ve kind of been marginalized your whole life, as an individual and a community, you start reaching out to support all of your community.
And Square, uh, before—creates a wonderful bridge to Chris, because, like, I’ve just been so... touched about the narrative of what happened here at Square, where it can—please tell me if I’m telling this story wrong.
I know I came to do a Lunch & Learn, and in between the month of, like, announcing when I was coming to do this Lunch & Learn for employees, so when I showed up, like, you—Mary, you had sent it out to employees, and you had, like, started to have autistic people, and other neurodiverse people, identify through Slack…?
And then start to organize on Slack, and then start to find—CJ is here, and Gabor is here. Other wonderful parents of autistic kids who work here at Square, and started to organize and now Square has an Employee Resource Group: The Neurodiversity Community at Square. December’s gonna be “Neurodiversity month” here at Square.
And so this is the model that I'm like, trying to show other companies that, you’ve got neurodivergent people here, and you can support them. And Chris, I think you wanted to say a few things…?
Yes. Thank you, John. Thank you, Steve. Thank you so much, everyone, for being here tonight.
Sorry, umm.... When I was hired at Square, I took a big risk that year. It was the same year I found out that I was on the autistic spectrum myself.
And Square’s mission of economic empowerment, what they were doing in the world, having them reach out to me and say “Hey, we’d like you to come work for us,” was such an astounding thing to happen to me. For all of the struggles that I’ve had all my life.
You know, all those years of feeling like a stranger in a strange land. And so in 2017, when that happened to me, I disclosed during the hiring process: Hey, this is something you need to understand about me.
This is something you need to know. Because I may have these strengths, and I may have these struggles. And you need to know, you know, when I’m wavering between the two. And to their credit, they brought me on.
And what happened is, as I was discovering more and more about myself, especially due to the extraordinary work of you, Steve, and the extraordinary group of voices that I was coming to find online, through you, John… that was just a ball rolling inside of me.
And then one day, I met a man, Chris Ereneta. And he was a stranger to me then. I just saw him across the room, in our cafeteria, and… It was just like a lightning bolt struck me.
Uh, you know, my… I saw him.... and normally I don't notice people. You know, faces and names just go right, you know, right through here and right out there, and people just kinda fade away to me. But, but, Chris, he had this wonderful shirt on, with, with my brain on it, you know.
And it was this rainbow-colored, pixelated brain, you know, it said, “Neurodiversity”, underneath it. And I looked to him, and with my heart on my sleeve, I walked over to this man, wearing my brain on his shirt.
And said, “You know, I have to introduce myself to you.” And I started talking about my family, and our struggles. And he started telling me about his son.
And... what happened in that moment, as I’m, you know, monologuing a little bit, and stumbling and stuttering over my words a little bit, and you know, I tend to—what I do, and I’ve done this all my life, is I apologize for how I communicate.
It just rolls off my tongue so easily, you know. “Hey, I’m sorry, I’m rambling. I’m sorry I’m doing this. I’m sorry I’m doing that.” And he looks at me, and he says, “Chris. You never have to apologize for how you communicate.” And in 37 years, no one had told me that.
And that moment, just along with everything else rumbling along... You know, right around that time, I think it was a little bit later, you know, you had come to see us, John.
It just struck me that at this company, with these principles of seeking divergent perspectives, with, you know, understanding someone’s struggle, with taking principled risks, and inventing and learning, that we can invent something special here for our community. For our Neurodiversity Community.
And so I, I started reaching out, and got to know Mary, through her efforts already, and then bringing folks like John here. Folks like Chris, folks like Gabor, folks like Claudia. Folks like Erinn Howard in St. Louis.
And we built this very special thing. And, I’m so, so thrilled to be doing this work. And to be realizing who I am, and finding so much pride and joy in that. And I just wanted to thank you all so much for being able to share my joy today.
So, does anybody have any questions they want to ask us? Or… say stuff?
Yes, so, uh, we, I just saw a person with his hand raised. Now I see two. Uh… anyone?
BEN (From Audience):
My name is Ben Ereneta. Chris Ereneta is my dad. And I’d be lying if I said that I wasn’t proud of him, for what he did for you, Chris.
I, too, am autistic. And the person that I look up to, is Temple Grandin. Ever since I saw the movie about her life with Claire Danes, I’ve sort of had an image for myself. And, I go to a school where there are a lot of kids with autistic traits, and… they stim a lot in class, and it somehow annoys me sometimes, but…
...this presentation really opened my eyes to why they do that, and, just... Hopefully this will make me more understanding of them.
JAKE (From Audience):
Thank you so much for these _____ words and this wonderful talk. I’m Jake, I’m a med student, I'm going into psychiatry, and I love this critique of the medical model, ’cause it's all I do all day.
And I wanted to point out an interesting corollary, in the new DSM, where homosexuality’s not there, but gender dysphoria is. Which, you know, signals that maybe our understanding of gender identity is 30 years behind sexual identity, but it’s an interesting point because it shows that it doesn’t come from a place of animus, but it comes from these very real logistical needs to have services covered, get these letters, get into, you know, things that will help, with, hopefully, doctors who don’t suck.
So I, I wonder. It sounds like you're describing a future in the DSM and in the medical world where things aren't pathologized, but I wonder, logistically, how do we make services, um, available without, you know, requiring, all this red tape. And what DSM-VI might look like, then?
I’m really… whew.
Yeah… I want to say one thing about the most recent DSM that most people don’t know. It was the first DSM that was… where the Autism diagnostic criteria had input from autistic adults.
So even though it’s still, I guess a pathology, because it says in the DSM—it says on the tin it’s talking about mental disorders…
The criteria were made better by the input of autistic adults, and, um, Ari Ne’eman and the Autistic Self Advocacy Network—which by the way I would very much recommend, like…
People say like, “Well if you don’t want me to support Autism Speaks, what groups should I support?” One good one is the Autistic Self Advocacy Network. Other good ones…
That’s a really good one. (laughs) Yeah, well—look for organizations that are run by autistic people, which aren’t… a lot. But it kinda goes back to the point of centering autistic people in the conversation. Not just for us, but for the benefit of others.
If we can connect autistic people to the people designing therapies, to psychiatrists designing their practices… If we could foster those conversations, outside of just the conversations about the DSM… it would help doctors, educators, understand autistic people better.
If somebody tells me they're a therapist that works with autistic kids, or an educator, or a service provider, I’m like: That really doesn’t tell me a lot. Because unfortunately most doctors don't understand autism. Most therapists who work with autistic kids don’t really understand autism, from the autistic perspective.
That’s not to mean that there isn’t a role for therapies and for services, but if you talk to us, if you partner with us, we can make things a lot better.
Yeah, the 2% number really struck me. I just think that’s kind of crazy, given that there’s such a big desire right now to talk about inclusivity and diversity, and to me, you know, neurodiversity is such an obvious, diffuse thing, that touches every community.
So I’m just curious, like, why isn’t there more money? And like how… what mechanisms do you think are in place, where we could just raise more awareness. There are people that have money that are donating to plenty of other, really valuable endeavors. This seems like a really underserved one.
And so I’m not sure if you have identified partners already, if you have ideas about companies—maybe Square is one of them—that can just help, and put more attention…
Well…. It’s uh… uh… [aside] oh the tweet about Autism Speaks…?
Let me just say one thing. The answer to the question “Why is it only 2%?” is what my book’s about. It’s like… Why did we only focus on kids? Why did we pathologize everything?
Like, the guy who became, you know, Leo Kanner—who became known as the world’s leading authority on autism—he had a patient who could identify the composers of eighteen symphonies before he turned two, after hearing only a few bars. That sounds amazing to me.
To Leo Kanner, it suggested that his parents were yuppies who were fascinated by classical music, and so the kid was desperate for love… and so was faking interest… B.S.!
Basically if an autistic person did it, it was pathologized. And there were only kids. And so that’s why only 2% of the national research outlay is on life-spanning issues.
That’s also why there’s so much research into genetics, because what really happened with this “Autism Tsunami” was that the true dimensions of the autistic community started to become visible.
Still not completely visible because of the problem of underdiagnosis of women and people of color. And in fact, a very famous autism researcher at the Yale Child Study Center was shocked when he realized that his own daughter was autistic.
Why didn't he know that? Because all the models of autism he had been working with for decades were based on the male brain, basically.
So we have a lot more autism awareness, if you will, you know, to do—to accomplish.
And by the way my friend Sarah Luterman, who is, lives in DC and is autistic, she mentioned the other day, “There are so many horse riding therapies for autistic kids, but for, like, non-autistic kids it's just called horse riding.” Speaking of, you know, pathologizing it.
This is something I’m like, immensely empathetic to, right? In the tweet that I was mentioning was that, for a variety of reasons, a lot of autistic adults do not like Autism Speaks.
And there’s that 2% number of spending for practical accommodations for us. Autism Speaks actually spends less than 2% of their spending on actually helping autistic people and their families.
But I tweeted out, I said, you know, so, autistic people tend to cringe at the puzzle piece. Tend to cringe at, “Light it up blue” campaigns, and what I said was, “We should absolutely stand against those types of things, but let’s give some empathy to the parents who are clinging to that as kind of the first thing that they encounter.”
Because think about it. If you have an autistic kid who’s diagnosed, you’re gonna look to whoever are the experts. And if there’s people with a lot of money controlling the narrative that say, “We’re the experts”? You’re gonna listen to them.
Unfortunately, scientific funding in the United States, what’s not controlled by the US government, is controlled by a few wealthy individuals who have their own priorities, who I’m very empathetic to, because if I was a rich person with a kid that I didn't understand, I’d probably want to fix her too.
But, there’s a difference between, kind of, going on that arc of the narrative to acceptance and understanding, and then being kind of bogged down in preconceived beliefs.
So we’re gonna have to have more engagement with the autistic community, with the scientific community, with the medical community... with people who control our services.
At this point, like, if I see an ad on Facebook for a service for autistic people, I’m like: show me your autistic staff. If you don’t have any, you’re not getting it right. You might get it “kind of” right, but you’re not gonna get it right.
Hello. As a parent, this is actually a nice segue, because navigating the waters is definitely a challenge. And thank you for acknowledging it, because one of the, one of the challenges is, you know, being involved.
Like, I love the Autistic Self Advocacy Network, I love the Thinking Person’s Guide to Autism. Steve’s book is the… was the first one to let me, help us sort of navigate the waters a little bit, but I was wondering if... and also pay homage to the parents and the individuals before us that contributed to what we know today, because a lot of people… We’re so fortunate.
Even though we’re so behind, but you’re really just— Go back a very brief amount of time and it’s a very tough history to read about.
So I wonder, like now, for example, for us, as soon as we got the diagnosis, the first thing that a insurance company does is, you know, throw like, you know, 20 hours of ABA, or you know, it’s like, the services and the framework that’s given to you is... is something that is a controversial practice, and it’s, uh...
I guess my question is, like, how would you address that for a parent that’s learning it, and that’s the first thing that their insurance company is telling them that that’s what you need to do for your… for your child?
From a parent’s perspective, it’s hard to break that frame. Because the parent’s gonna do what they think is best for their kid. And if they’re being told this is what’s best for their kid? That’s what they’re gonna do.
But, if you can have the knowledge to connect with autistic people, to learn from them? To figure out from them? Whatever you’re doing, it’s gonna make it better.
There’s a teenage girl named Chloe who just spoke at the United Nations—[aside to Steve] which, I first saw you speak at the United Nations for World Autism Day a few years ago...
A teenage girl named Chloe who is... sometimes verbal, sometimes speaks with a communication device.
But my friend Brooke, who I grew up with—from kindergarten through graduating high school—has a non-verbal 13-year-old autistic son with high support needs.
She [Chloe] has encouraged Brooke like no one else. She’s mentored Brooke. When Brooke is just, like pulling her hair out at the times of frustration that parents get. She helps Brooke understand her son, and translate things for her son.
So, it’s a hard thing, in my perspective, to unravel, but the more that you can connect with autistic adults, the more things that you’ll learn about your kids.
I also want to throw in a plug for another book, called Uniquely Human: A Different Way of Seeing Autism by Barry Prizant.
Another thing that Barry does that’s super good, is that he has a parent’s retreat every year. And apparently it’s a really healing and encouraging event for parents. And I believe he makes it possible for full scholarships, so it’s not limited to any economic stratum, but Barry Prizant does really good work.
And I have to say I’m kind of impressed by the—you know, like every author I check my Amazon numbers, you know. Barry’s numbers are still REALLY HIGH. Our books came out together, so that means a lot of people are...
They’re getting a book that helps them understand their children’s behavior without pathologizing it.
FRANCIE (From Audience):
Also, there are a lot of, there are a lot of Facebook groups that are specifically for connecting parents with autistic people. There’s one, “Ask Me I’m Autistic.”
But there are others that... there’s a feed that is put out by a mom of an autistic kid, that is Spectrum Navigational Services, and she has a lot of autistic people following her page, and we engage there. So she’ll sometimes ask questions, and like... I get her posts quickly every day, and a lot of people respond there.
By the way, I want to acknowledge Dr. Karhson, who’s in the room, who is an autism researcher at Stanford, and does a wonderful job… That’s it… (shrugs)
SHANNON (From Audience):
She just did a podcast!
DR. KAHRSON (From Audience):
You're so ridiculous, oh my God.
What’s the podcast called?
SHANNON (From Audience):
She was just interviewed at Stanford Medical about her history, and the work she’s doing on autism research [...]
DR. KAHRSON (From Audience):
I have an autistic brother. And so—I guess I’m, like, one of the oldest, uh, like, baby sibs, because he’s older than me. So I’m like, younger than him. Which is not typical, which means I’m, like, one of the first to, like, go into research, so...
What’s your podcast called?
DR. KAHRSON (From Audience):
Oh, it’s not my podcast. It was like, the “Portraits of Stanford Medicine,” did, like a, they’re like “Look at you! You’re brown, and you do medicine!”
So, like, in there I talk about my brother, and my parents, and, like, our lives. And, like, my life is SO much better with autism in it. I don’t know what people do when they don’t have it in it. But like, my house is a house that autism built.
We have padding on the walls, we, like, have weird lights... Like, neurotypical people are, like, “Whoa, what is this?” And we’re like, “Why are you being so weird? It’s not for you, it’s not for you, keep it going!”
And a lot of times, like, I straight up bully people when they don’t get it. Like, I tweeted about the fact that I was able to come up to this talk without talking to anybody, like, I did not have to verbalize a damn thing.
Which is awesome, because sometimes, like, you just don’t feel like talking. And, it’s not like, the accommodations that we make for autistic people, aren’t just for autistic people, right? Like, they’re for people who are just not feeling other people, or, whatever, right?
It’s just, like—Sometimes I wonder why don’t people understand how to interact with differently-abled people? It’s really just about… If you can do it with a baby, you can do it with other humans. You know what I mean?
So that’s, uh, so that’s kind of a wonderful thing that I’ve noticed that happens when I talk to companies, cause I do, like, introductions for neurodiversity. I also work with some other people on some deeper management training.
And I have a colleague who gets people really excited about hiring neurodiverse people. They’re, like, “Yeah! Those are the type of people we want!” Not like we’re special, we’re just different, and they didn’t realize they needed us.
And my colleague makes a point of like, “Well, great, if you want those people, your hiring systems aren’t really ready for them, your retention systems aren’t really ready for them.”
And there’s usually this point in the training, where it’s usually like a senior manager, decisionmaker, it’s usually a white male, says, “Oh, well, the approaches that you’re talking about for autistic people… I wonder if that’s why women keep leaving our company…?” Or “I wonder if that’s why, like, people of color, like, aren’t being attracted to our company…?”
And I look around the room, and any executive who is a woman or a person of color just gives me a look of, like, “This is what we’ve been talking about.”
And the truth is, is like, we experience the world differently. And so we need some accommodations. And we need some ways that we can be productive in our teams. But when you think about it, most workplaces aren’t really designed for most people. They’re designed for certain segments of people.
So that’s one of the areas—I’m so glad you said that—that I’m really passionate about. Because I kind of see that spillover effect.
So, something that you’ve talked about, John, and this is a bit of a “pivot”, if you will, is the sheer number, of, like, organizations and groups and stuff coming out of the Bay Area, and how there are a few elsewhere.
Some of the ones that I’ve seen elsewhere, like, workplace groups like this, or, you know, college groups… And they all seem to be very—there’s some overlap—they all seem to be very self-contained.
And I’m wondering what, cause like, and like you were saying a lot of us don’t have access to those resources, and I’m wondering, what some ways might be to get all of the different groups connected and working together and pooling our resources and our time and our energy and just kind of not limiting it just to the San Francisco Bay Area, or just to Washington DC, or just to one specific college campus, but instead kind of bringing us all together.
Yeah, Cassandra and I are actually speaking in San Diego in October about, uh, friendships at the Love & Autism Conference. And she’s making the point about how autistic people tend to make friendships online… connect online.
We don’t have the resources that most people have, you know. “Bootstrapping” is a nice way of saying I’m doing this company with no money, (laughs) And these other groups are doing it... with no money.
But the benefit that we have as autistic people is, like, we at least have an inclination to support each other. So as I’m doing what I’m doing, I’m constantly looking out to see, okay, like, how can I turn and make this available to another group, you know?
If I’m getting hired for something, I can’t do it all by myself, you know? Is there talent, neurodiverse talent that I can hire to do this work?
Or, you know what? Maybe I’m not the person to speak at this conference. Is there somebody that’s more fitting to speak at that conference? So I think we have an inclination to watch each other’s back. And now that we’re aware of each other, to be conscious of that. I think it’s really gonna be our power.
We should wind up…? Yeah, yeah. So thank you very, very much. Thank you, John. Thank you Chris, and thank you all in the Neurodiversity Resource Group. It’s been a pleasure to be here.