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John Robison — Neurodiversity in the Real World

John RobisonLooking at John, you might not peg him for someone who built flaming guitars for the rock group, KISS. The buttoned up shirt and bowtie are more in line with Bill Nye the Science Guy. John Elder Robison is certainly someone with multiple layers who will never fit into one box. The opening Keynote speaker at the Neurodiversity in the Workplace Conference presented by the Kennedy Krieger Institute, Robison energized the whole room. Currently Neurodiversity Scholar in Residence at The College of William & Mary, he has written numerous books on his experience growing up with undiagnosed Asperger’s syndrome. He says that “Neurodiversity is the idea that humanity is by nature neurologically diverse – we have different ways of thinking that are founded in structural brain differences – and that diversity is essential to our success as a species.”

As an advocate for Neurodiversity, Robison has helped shape policy on autism by working with the National Institutes of Health, Centers for Disease Control, Autism Speaks, World Health Organization, U.S. Department of Health and Human Services and the Institute for Autism Research. Even though his list of credits is long, Robison didn’t learn of his Asperger’s syndrome until he was 40. At age 62, he shows no sign of slowing down— his writings have been translated into 18 languages and sold in over 70 countries. The ABILITY team sat down with Robison in Baltimore to discuss everything from advocacy to guitars to cars.

John Elder Robison: I just was observing that you’re a full-spectrum disability magazine and group, and most of what I have worked in is advocacy for neurological differences that contain components of disability. So the neurological things in my family are autism, ADHD, anxiety, depression, epilepsy. I have lifelong personal familiarity with that but like a lot of families with neurological differences, we also have physical disabilities and challenges, things like—well, epileptic seizures are a leading cause of death for autistic people. We can die in our sleep from undiagnosed seizures. Many of us live with chronic intestinal pain. Many of us, like me, have joint problems and mobility problems. Actually, I didn’t even know that those things would rightly be called disabilities until I learned about my own autism and learned that medical complications like that accompany autism. Because when you hear about autism, you hear that a person with an autism diagnosis has a communication disability. But you don’t really think that such a person might live with chronic gut pain. How would you think that? I guess I’m continuing to see that.

Chet Cooper: How did you get involved with NIH?

Robison: Well, I started speaking in public after I began writing about life with autism. A scientist from NIH asked if I would like to serve on a community advisory board to advise NIH on the direction of autism research. That was back during President Obama’s tenure. He had pushed NIH to involve more members of the affected communities in guiding research for those communities. In other words, to have folks who lived with a stroke to advise on stroke research, folks who lived with autism to advise autism research, folks who live with anything else that we’re researching to help advise researchers not on which piece of science seemed better, but which proposed pieces of research were potentially meaningful to the community. And also about whether the research was constructed in such a way as to be accessible and respectful and so forth with the community. Those concepts were just evolving.

Cooper: So, a little bit of a nothing-about-us-without-us concept?

Robison: Well, no, it wasn’t that at first. At first, the idea was for affected people to guide doctors and scientists who would figure out how to help us. And from that, I was asked to join other committees and eventually we got to a point of myself and other autistic people writing our recommendations for what we believed the government should be researching into a strategic plan for autism for our country which in turn guides our public health agencies and other researchers. So at that point it became nothing-about-us-without-us, with autistic people not saying, “I agree with this proposed thing that you want to do for us,” but autistic people saying, “This is what I think our country should be doing to support autistic people.” That’s nothing-about-us-without-us.

Cooper: Because it’s such a spectrum, how do you engage those people on one part of that spectrum who have a very difficult time communicating and difficult times with their own bodies and how autism is affecting their person?

Robison: Well, over the last 20 years, I’ve gotten involved with a number of groups, autism schools, programs, workplaces. I’ve spoken at many, many schools, universities, and other organizations, and I meet autistic people of all stripes wherever I go. So sometimes I’ll see an autistic person who might not speak in words, but that person might raise their hand or smile at me in solidarity with the words I say. Sometimes a person who doesn’t speak in words might type a message to me on an iPad and the iPad will say it to me, or they will type it on a screen and I will read it. And then of course people say, “Well, I’m here with my brother, and both of us have autism, and my brother doesn’t talk so much, but I do.” And then of course I talk to parents and I talk to teachers, clinicians, all kinds of people. The autism community is all sorts of folks, and I do my best to discern the general concerns in the community from what I hear and what I see.

I feel that as a representative of the autism community before the government, I was appointed by the Secretary of Health and Human Services to represent autistic people. I wasn’t appointed to represent people like me or people with certain values. It’s not like an election where the public choose you based on your views. I was chosen because I am autistic to represent autistic people, so I take that seriously. And I do my very best to allow all voices and points of view to be heard before the government, whether I agree with them or not.

Cooper: It’s always a challenge in my mind to try to truly give a voice to such a broad spectrum of stripes, as you say.

Robison: The thing that’s challenging about autism is that you have a very broad spectrum which extends from difference in eccentricity to profound, total disability, and you have a range of accompanying effects where some people with autism diagnoses do not seem to have other medical complications. Then there are people like me who have an autism diagnosis and are not aware that something like chronic intestinal trouble is a common co-occurrence of autism. And finally, there are people who are profoundly physically disabled by conditions that accompany autism. So it stands to reason that those folks, with such a great range, are going to have very different wants and needs. They might all say, “I want support and acceptance,” but “support and acceptance” might mean something very different. “Support” for one person might be counseling about relationships or executive function, where “support” for another person is protection against life-threatening seizures.

And of course, the first person might not be affected by seizures at all. If you said, “What do you need?” to one or the other, they could say something totally different. And yet they all need support. That means that our obligation as a society is very, very broad.

Cooper: Prior to your starting to speak and write about autism, what were you doing? What’s your trajectory? Where have you been?

Robison: I grew up with autism before it was recognized in folks like me, who were articulate and verbal. In school, I was put in language lab to repeat phrases endlessly. to improve my speech. I was put in counseling for emotionally disturbed kids because “emotionally disturbed” was the word for autism, OCD, and such back in the ’60s. But I attended the same social studies or math or English or whatever classes as everyone else in my school.

Now, instead of putting kids in programs like I was in, people are put into this whole “special ed” track. Special ed can mean that you are with a bunch of kids for whom collectively the teachers have very low expectations, and you’re ridiculed by the other kids who aren’t in special ed. And the last thing you want is to be in special ed, you don’t want anything to do with it. That’s an example of how we are singled out and treated worse than in my day in school. And that’s, I believe, a mistake that we make in the conduct of special ed in America. I don’t think we should have special ed. I think we should have accommodations as people need them. But I think that to the extent possible, everyone should be together.

I ultimately couldn’t complete school, so I left and went out on my own. First, I worked in music and engineering, and I worked a bit in industry, and then I started a business repairing and restoring cars. It was at the business where I learned the social skills such that a person who came in once, I could talk to them and be pleasant enough that they would come back twice.

I got to know some of the clients who came to our business, and one of them was a therapist who, after talking with me over a number of years, said, “I wonder if I should even say anything to you because you’re a successful guy, but you’ve told me so many times how you feel like you’re outside, in the dark, in the rain, looking in at all the people in society and you don’t know how to be inside. There’s a name for that. They’re just starting to talk about it.” This was in the 1990s. He said, “It’s called Asperger syndrome, it’s a kind of autism.” And I was frankly stunned at that. I had no idea. But then I read the descriptions in a book on Asperger syndrome, I realized that it absolutely fit me. Not looking at people when I talk to them, not understanding body language, standing too close, standing too far, walking away when someone was talking. Even my fixations with trains and boats and machines, all those things turn out to be characteristic of people like me. And people like me, I read, are a large group. There are a lot of us.

So, for the first time I had a non-judgmental explanation of why I was different, and that made me start to think that there must be thousands of young people growing up just like me. I never knew why I was different, and it would be valuable, I thought, if somebody who was my age could speak out and say, “Hey, you might feel like you’re a failure in school, as I did when I was 16, but you can grow up and you can be OK. You can build a business, and maybe you won’t feel like you fit in in a regular workplace, but I built my own workplace, and I fit in fine.” And I think that was a valuable thing, and that’s what started me on the road to advocacy. I felt that with me, the stuff I was doing, fixing cars in a small city in America, anyone can fix a car. You might think, “Well, I’m not going to grow up and go to school and do this fancy thing,” but no matter where you live in America, you can fix a car. So, I thought that that was a relatable thing.

Cooper: What about the Amish country?

Robison: What about it?

Cooper: They don’t have cars.

Robison: Well—

Cooper: (laughs) You’d be fixing buggies, probably! You’d tinker with something.

Robison: I guess if you ask in seriousness what about an area where they don’t have cars, I was always interested in machines. Cars are of course a really visible machine. Everyone in most parts of America is around those machines. If I was in an Amish community as a boy, I expect the machines that would have fascinated me would have been the wooden and metal workings of wagons, the mechanisms of water wheels, the mechanisms of plows and harrows. My great-grandfather was the county agent in Gwinnett County, Georgia in the Depression. Before he taught me about cars, he taught me about farm machinery.

Cooper: Nice!

Robison: And the Amish absolutely know farm machinery. I would say that my early gifts were understanding machines. So yes, I said “cars,” because every city has cars. But it’s also true that every city has machines, and a person who has an affinity for machines can find a place anywhere.

Cooper: Right, right. Have you heard of the institute Exceptional Minds in LA?

Robison: No.

Cooper: All of the students who come in to train are on the spectrum. They train animation and video production—

Robison: Oh, yes, I’ve read about that, yeah.

Cooper: They’ve found that there’s an affinity to a large group of people with autism and Asperger’s who like that kind of thing. You’re saying your affinity is mechanical machines. These folks—and I’ve seen some of their work, and it’s—

Robison: Yeah, there are folks who do computer graphics and design and stuff. That’s another area where a lot of us can excel. That’s definitely true.

Cooper: Was the auto business you created a one-man shop? Did you have a place where there were multiple mechanics under you?

Robison: It was a one-man operation in the garage next to my house 35 years ago. Today it’s five buildings on two and a half acres, and there’s a bunch of people doing all kinds of different things. I’m here talking to you in Maryland, and the car company is back home running.

Cooper: What do you look at right now in your future? What do you see yourself doing from now through the next five years?

Robison: I hope that I can retain good health and continue to be able to go and speak because I think that the message of neurodiversity and inclusion, as you said, the idea of nothing-about-us-without-us, is really important. And I think it’s important that older people stand up and speak for that as well as young people. I’ll do my best to continue doing that.

Cooper: Did you look at our emoji quiz?

Robison: I did, yeah.

Cooper: Did you try it?

Robison: Yes, and I saw somebody wrote “Burger King” and I thought “cheeseburger,” and I wondered how “burger” related to the crown, but I do see how that would be. What’s this emoji?

Cooper: That one turns out to be “popcorn.”

Robison: Oh, What’s this? Sun ___?

Cooper: Close. “Solar power.”

Robison: And—

Cooper: “Coffee break.”

Robison: Oh, yeah. I guess I look at these things and people send messages with these emojis on phones, and my own phone has a screen with a hundred of them, and you know, I kind of don’t use them. It’s one of those things I think being autistic that I think of this kind of stuff literally—

Cooper: Exactly.

Robison: So I look at what this is and it was not clear to me what that is intended to depict, and therefore I don’t know that I’d have thought “popcorn,” but I imagine if I learned the meaning of the emojis and I started to learn the pattern, I would be able to solve a problem like that. But right out of the box, since I don’t use them, I think I interpret what I see literally in the context of my own life, and I guess I don’t do it right.

Cooper: The emoji phenomenon, it’s kind of a form of language. They’re using emojis for people who are non-communicative, who have dementia. They’re realizing that they’re able to create these emoji sequences to communicate with people who have become nonverbal.

Robison: You have to hope that what you read as the communication is the same thing that they intended.

Chet Cooper: This one is “No time for bullshit.” What about this? “Drink, drink, drink, eat”?

John Elder Robison: This is three-martini lunch.

Cooper: Perfect! Do you know how many people do not get that? And this one, you know what that is?

Robison: Is that a panda bear?

Cooper: Yeah. So the movie is “Kung Fu Panda.” Do you remember that movie?

Robison: No, I never heard of that.

Cooper: It was a cartoon. This is a Stevie Wonder song.

Robison: Uh— (pause) I don’t know.Emoji Quiz

Cooper: “I just called to say I love you.” Which is tough. Myself, I wouldn’t know that that meant “I.” They say it’s universal, but it’s also female, so that word throws me. I don’t get that. I get the phone would be “call,” and then “to,” and then that would be “speak” or “say,” and then back to “I” and then “love.”

Robison: My wife says that I don’t have much of a sense of popular culture. I guess I don’t know that I associate things with any movie names, I don’t really watch movies.

Shelly Rohe: Is there a difference for songs since you were involved with music?

Robison: Music and movies. Music is a thing that if I was working, putting equipment together, running sound equipment for a show, I had a job I focused on to deliver clear sound for the audience. I wasn’t out there, I wasn’t trying to meet people or dancing or things like that. I had a job to do. I was very focused, and that’s what I did.

Rohe: In your talk, you said you engineered equipment like guitars based on how an artist wanted it to sound. You could visualize the sound?

Robison: Yes, like when people told me about wanting a certain kind of sound effect, I imagined what would be an electrical circuit that would make the effect that they wanted, and I would build those things, and then I would have people try the prototypes out and see how it sounded, and we would modify them until we had what we wanted. And that might have been a sound effect in a box or something that was built into an instrument. It might have also been an attribute of a big concert sound system. But when I was at a show when something like that was being tested, I would be really concentrating and listening to the thing at hand and seeing if it did what I expected it would do. And also, of course, that it didn’t just blow up in the middle of a show.

Rohe: Did that ever happen?

Robison: Yeah, sometimes it happened, yeah.

Cooper: But it was a good sound, though?

John Robison and Kiss lead guitarist Ace Frehley
John Robison and Kiss lead guitarist Ace Frehley

Robison: Sometimes the equipment would break. With our main sound systems, we would have enough amplifiers, enough speakers, that you could lose one or two or even 10 or 20 in a big system and the audience would never know. And yeah, that would happen. We would blow equipment during shows. You would always have to either be prepared to run without it or change it out at an instant’s notice, and that’s why you were always—even if you seemed to be just standing at the side of the stage, you were ready to jump up there in a second if it stops working. And you never know when that will be. It’s like a guitar, if you break a string, you’ve got to jump up and hand the guitarist another guitar.

Cooper: When you were doing prototypes, did you use equipment you knew and modify it, or did you literally write the mathematical formulas of sound waves?

Robison: At first, I modified equipment that existed, but then I began building things from scratch. Later stuff I did was equipment I just made out of parts, out of nothing.

Cooper: How did you know what was going to come out? Was it a mathematical formula? Parts you knew had certain sound connections to them?

Robison: I knew that various components had certain attributes, and I imagined that if I strung them together in a particular way, they would do the thing that I wanted. And I would build them and see if that was true.

Cooper: Did you build guitars, too?John Robison Kiss Pass

Robison: I didn’t craft the structure of the guitar to play, but I built electronics that went in the guitar that shaped its sound. In other words, I was an electrical engineer and not a luthier. A luthier would be a person who would make a guitar or ukulele or whatever. I didn’t do that. I put electronic guts in them.

Cooper: So you had existing guitars, whether Fenders or whatever.

Robison: Or Les Pauls or Stratocasters or Telecasters or Gibson EB-3s or Fender Precision Basses or whatever it might be.

Cooper: Did you ever go to any of the factories, like the Fender location?

Robison: No, I never went to Fender or Gibson, no.

Cooper: We did an article on Fender’s life, which is in Fullerton, California.

Robison: Yup, I remember that. Fender Electric Instrument Company, Fullerton, California, yup. It was Leo Fender, right?

Cooper: Yes. He had a disability.

Robison: He did? When I was doing that I didn’t know anything about disability. I was just making my way the best I could. My awareness of disability is relatively new. I always just did the best I could. I always assumed that other people could do stuff better than me. And I believed that I was like a second-rate person, because other people could do stuff better than me. I understand today that that’s an unhealthy way to see yourself, but that’s how I and probably a lot of people saw ourselves if we grew up and weren’t able to do what other people could do and we didn’t have friends and we didn’t have academic success. That’s how I imagined myself. But if you had called it a disability understanding, I don’t know that I’d have known what you were talking about. I didn’t make that association until much later in my life.

Cooper: Where do you live?

Robison: Amherst, Massachusetts.

Cooper: So you have to deal with the seasons changing?

Robison: Yes.

Cooper: You said you have five buildings now? Each building has separate bays?

Robison: Well, the buildings do different things. We have general service and repair for Mercedes, BMW, Jaguar, Land Rover. We service Mercedes Sprinter commercial vehicles and Ford Transit commercial vehicles. Then we have another business with us that does state inspections, another business that does front-end alignments. We also have part of the backup 911 ambulance response capability for our city. We have our room in our complex for—at this moment it doesn’t, but we have held up to about 20 ambulances, so we respond to emergency calls out of there. With all those things, because we’re an emergency response center for our city, we never close. So if we have blizzards and the roads are closed for snow, we are not closed, because you always have to be able to get the ambulances out. We have plows and snow removal and folks who take care of the buildings. We do a much wider variety of things than just the fixing of cars that I started with. But it’s all related to motor vehicles.John Robison

Cooper: Have you thought of hiring people with disabilities when you look for new employees?

Robison: We do. For five years we had a state-supported program to teach the automotive skills to folks with developmental disabilities. We’ve employed people with cognitive disabilities and autism and ADHD pretty consistently over the years. Not because we have gone, say, to the state and said, “We want help bringing people like that in,” but because I’m a neurodivergent person, my son, who’s worked there some, is. It’s just how we think. We gravitate towards people like us, I suppose.

I think that if you identify in a certain way, you’re going to probably have more of those folks. If Judaism’s a big thing in your life, perhaps you employ Jewish people because you think, “I’m going to give them opportunity in my community.” For myself, as a fellow with autism, ADHD, dyslexia, and such in the family, I’m comfortable with people who are like me. For somebody else, we may be different, but for us, we are us, you know? And so that’s how I see employment like that.

And I think that it’s important to note that other people who come to work there who either don’t have disabilities or don’t have the same disabilities, ultimately everyone has disabilities at various points in their lives. And I think for them to come there and see somebody like me who runs it and is not just a—is not working there with somebody accommodating me, if you want to be there, it’s my establishment, and it’s my rules. And that’s very different from asking employers for accommodation. And I guess I feel like many people who are different, whether you call it disability or they’re different for some other reason, we do well in the trades. Because frankly, you do not care about a person’s conversational skills or how they look or how they walk if your toilet is clogged up and that person can unclog it and that is the job you want done. If your car is broken by the roadside, you want your car to drive again. And if you want cabinets made for your kitchen, and guy you might describe as weird or strange or whatever, if that fellow can make beautiful cabinetry, beautiful cabinetry is the thing you’ll remember for the next 20 years. When we make our own place, we’re not asking for accommodation. We’re just being like everyone else. And to me, that’s what inclusion’s all about. It’s about, like, in marriage, right? If you marry somebody and you’re in good health and you have a stroke or an injury and all of a sudden you’re disabled, you don’t expect your wife will leave you.

I feel like it ought to be like that in the workplace. If someone has a disability in a workplace, there shouldn’t be any question that they still have a home in that workplace. And of course, that’s not true in a lot of America, but if you’re a person who lives that yourself, if you’re the owner of the business, you probably would understand that with people who work for you. I guess I just wish, recognizing that everyone is disabled at some point, that that was a broader thing. I look at companies that measure employees by how many steps you take an hour. You might think all these people can do this when they’re 20 years old, but what are they going to do when they’re 60? Will you just toss them out? Because everybody ultimately won’t do those kinds of things. And I feel like that is an area of social policy where we have a long way to go.

But small businesses speak to that. A guy who runs a hardware store is not going to change somebody out because the guy’s been with him 20 years, and when he came in, he was young and spry and now he’s old and slow. A company that doesn’t have a person who’s—it’s just like a big faceless corporation, you do see people pushed out for that, and I think that’s wrong. So I guess I just try to speak about all these ideas, but my understanding of these things as disability advocacy as opposed to just doing what I thought is the right thing, that is new to me.

Cooper: You were saying that you were first board member of INSAR to have autism. Can you talk about that?

Robison: Today I’m involved in autism science, both in my roles advising government organizations on autism and neurodiversity and policy and directions of constructive research. I’m also a member of the board of INSAR, the International Society for Autism Research, which is the professional society for autism researchers.

Cooper: What does it do?

Robison: INSAR publishes a journal, Autism Research, a professional, scientific journal. We put on a conference where scientists present research and discuss it and we disseminate scientific knowledge about autism. We promote scientific standards and best practices in the conduct of research. We try to create an organization that people will want to join. We hope that grad students will see the promise or reward of a career in autism research and they’ll join as student members, and then they’ll become early career members, and then they can become older members and ultimately fellows of INSAR. We try to be an advocacy organization for people who are committed to autism science.

Cooper: I’m sure you’re asked this often, that it comes up in some form, about what your thoughts are or what science is saying on vaccination.

Robison: We haven’t really found a connection between autism and vaccines in the ways that people have alleged. However, it’s my experience in public advocacy that you can’t change a person’s belief. You can’t take it away from them, but you can give them something they think is better to believe. Maybe they think it’s better because they think it’s more accurate, maybe it fits their understanding better. When a person who says to me, “I believe my child was injured by vaccine,” I’ve learned that for me to say, “Well, science says you’re wrong,” isn’t particularly constructive. It doesn’t change their mind. It leads to an argument. It doesn’t accomplish much. If I say that, they say, “OK, why is my child autistic? Why did this happen?” And while I could say, “Your child’s autistic because some of us are born this way, and there’s good evidence for that,” that’s true. But we also have scientific papers talking about how the incidence of autism is greater if you live within one mile of a California freeway, if the father is over 40 at the time of conception, if the mother contracts certain strains of flu during pregnancy. Autistic behaviors can be mimicked by lead poisoning, by mercury poisoning.

A parent hears all these things, and you can’t blame them for saying, “That doesn’t sound like inheritance to me.” Unless we have answers, it is very hard to combat supplication or belief. We need facts to do that. Frankly, we’re not there in understanding the tremendous complexity of how neurological divergence emerges. There’s no question that some of us are born different, but there’s also no question that some of us are different through injury, through trauma, through all sorts of factors. And I guess what I say to somebody who says, “I believe my child was injured by vaccine,” if I say, “I don’t believe that I am injured by vaccine. I’m an autistic person. I don’t think it’s my place to tell you what you said believe about your child, but what I do hope is that you will join me in agreeing that we want to work together for the best quality of life for all autistic people, for your child, for me, for my autistic child. We should absolutely be together and in solidarity that we want the best services and supports and the best opportunities for all autistic people to live their best lives.” How we came to be how we are should not matter. That’s not part of the discussion about a best life.

Cooper: That’s a nice response. My only issues with vaccine is that it does affect others. Measles is an example. If people are not vaccinated—

Robison: You know, that’s true, but many things that we do affect other people, and I feel that for a lot of people, belief in vaccine as an agent of injury is like an article of religious faith. Unless you can give a concrete, acceptable answer for why a person should believe different, I don’t think you can change that person’s belief.

Cooper: There are consequences for those beliefs.

Robison: I do understand that, but I feel that I have to look at—as a public advocate, where can I build consensus and achieve the best result?

Cooper: I think you’re right on.

Robison: And I believe that I’m on a good track, that working together for the best outcome is a thing we can be a team on. We don’t have to agree on where we believe it came from, on where it’s going except insofar as we want it to go to a better place for those of us today.

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