Guest Interviews — 42 Minutes

INSAR 2019: John Elder Robison

Guest Interviews — 42 Minutes

INSAR 2019: John Elder Robison

John Elder Robison joins us from the INSAR conference in Montreal.

John Elder Robison is the Neurodiversity Scholar in Residence at the College of William and Mary in Williamsburg, VA, and one of the founders of the Neurodiversity Program at the school—one of the first of its kind at a major American university. He teaches neurodiversity at the Williamsburg campus and at the Washington DC continuing ed facility. He is an active participant in the ongoing discussion of ethical and legal issues relating to autism therapy, services, and intervention. He is particularly interested in improving quality of life for those people living with autism today—both autistic people and family members. He’s been a member of the Interagency Autism Coordinating Committee of the US Department of Health and Human Services, and he serves on other boards for the US National Institutes of Health, the Centers for Disease Control, and private organizations. He is also a Professor of Practice in the Department of Education at Bay Path University in Longmeadow, MA, and the co-founder of the TCS Auto Program, a special ed high school program for teens with developmental challenges in Springfield, MA.

Frampton Gwynette: I’m Frampton Gwynette with the Autism News NetWORK here with John Elder Robison from Montreal, Quebec, Canada. John, thanks for being here.

John Elder Robison: Yes, thanks for inviting me to speak with you here at a conference. Yeah.

Frampton Gwynette: Absolutely. For those of you who aren’t familiar, John is a bestselling author. He’s also an international leader in autism advocacy and he sits on multiple national and international organizations.

Frampton Gwynette: He also has his own business, which I definitely want to talk to him about during the course of our discussion. But John, one of the things I saw just in reading in preparation for the interview is that, as one of the leading voices in advocacy for autism, you, and correct me if I’m wrong, but you believe that autism shouldn’t be viewed as a ‘problem’. Can you expand on that?

John Elder Robison: I think that people use language around autism, like the autism crisis or the autism problem, the autism epidemic to present autism as a defect in us. By presenting it in that light, we are made to appear less than other humans.

John Elder Robison: There’s no doubt that autism confers challenges. For some of us, it also confers exceptionality. You could say that disabilities are problems, but that doesn’t mean that autism is a problem or autistic people are a problem. I think that’s the thing that I am careful to point out.

Frampton Gwynette: Yeah, absolutely. More of a focus on what someone can do, not what they cannot do. I work with a lot of patients who have had such a hard time with acceptance in groups, and I think also they have trouble accepting themselves because they’re told from the outside that, “Hey, X, Y and Z or wrong about you, it needs to be fixed.

John Elder Robison: Well, that is really a fundamental problem in our society. An autistic person like me, we all grew up with kids on the playground telling us what they imagined was wrong with us. We were stupid or defective.

John Elder Robison: Autistic kids who had more visible challenges were in some cases tormented even more. We heard that right from the very beginning. Then we had problems in school, problems making friends and at some point someone evaluated us and said, “Well, you have this autism thing.”

John Elder Robison: On one hand it can be an enlightenment and a relief to have a nonjudgmental description for why you’re different. If that comes after a lifetime of being told you’re less than other people, you still suffer a considerable amount of harm beforehand. I think that is a real big societal problem.

Frampton Gwynette: Mm-hmm (affirmative). Absolutely. In our Autism News Network program, our content has migrated into almost exclusively firsthand accounts of topics that are interesting to our participants. One of the big topics that always comes up is bullying and its impact throughout their life.

Frampton Gwynette: I don’t think that people really understand how deeply that can affect someone’s life course and self esteem. I think you’ve tapped into something very important there.

John Elder Robison: I also think that when you talk about bullying, kids telling other kids like me that we’re stupid or retarded or mental or any number of other names that kids had for me when I was five years old, I think if you asked them, they would say, “I wasn’t bullying him, I wasn’t beating him up, I wasn’t doing this or that.”

John Elder Robison: I think that even now sometimes doctors and clinicians will talk about us in the third person as suffering from autism. Reporters often describe us that way, suffering from disability.

John Elder Robison: I think that those are all things that diminish us even if the person means no harm by saying and I’m sure that a doctor report or doesn’t mean a sale.

Frampton Gwynette: Yeah.

John Elder Robison: But that’s still the harmful effect.

Frampton Gwynette: Yeah. You’ve done something that I wish I could do, which is you’ve written a book, you actually written multiple books and one of the things I was hoping our audience will take away is just the sense that if you can do it they can do it, but what are the sacrifices needed to be an author and to finish a book and how do you… you’re so busy, how do you… What’s your workflow like to get that book out the door?

John Elder Robison: Well, like a lot of autistic people. I have these ADHD traits also. In a kid you might say they were bouncing off the wall and couldn’t sit still. In me I will open up the computer and I’ll write a few paragraphs of an idea for my book and then I’ll walk out the shop and talk about jobs they have in process and I’ll talk to somebody on the phone and then I’ll open up the computer and I’ll write a few paragraphs about an article about cars and I’ll just constantly do one thing after another and eventually the work product’s finished and there are articles written and there are books and I’ve talked to people and I just keep doing all of the things. I don’t see it as a sacrifice.

Frampton Gwynette: Yeah. You’re moving around from activity activity, but you are persistent in the longterm over the months and the years to make sure that these various projects get done

John Elder Robison: Well, I think they traits that are involved are common to autistic people. I think the ADHD trait of bouncing from one thing to another is common, although some autistic people are the opposite.

John Elder Robison: They can’t do that. But a lot of them are like me and they have that. I have that really deep concentration. In a child they called that a restricted… an intense interest.

Frampton Gwynette: Mm-hmm (affirmative). Sure.

John Elder Robison: But in an adult like me, I study and research things more intensely and in an adult, the word for it would be he does a better job.

Frampton Gwynette: Yeah.

John Elder Robison: I think a good number of autistic people share that characteristic also. But I think it’s note worthy that a lot of autistic people who have those characteristics have only heard them described in the context of disability, not exceptionality and yet they’re really both.

Frampton Gwynette: Yeah. As you’re talking, I’ve just thought of the word creative or artist because a lot of artists may move from project to project but you’re creating a book here. I want to talk about your automotive work that you’re doing. You’re really have skills in so many areas and you’re about creating things. Would you ever go as far as to say sometimes those ADHD moments could be also bursts of creativity?

John Elder Robison: Yeah, there probably are. I think what I do is I do have ideas and I have a gift for expressing them, whether I express them through my written words or through photography or through automotive art that we create in our restoration shop.

John Elder Robison: Those are all bursts of creativity, I suppose. Yeah.

Frampton Gwynette: Yeah.

John Elder Robison: I think that that’s what I do. I’m not a researcher. But my place here in INSAR is to connect researchers.

Frampton Gwynette: Yeah.

John Elder Robison: Because I am not a researcher. I’m not a competitive threat to any scientist here. They’ll all talk to me. As an autistic person, I have a different perspective on what they’re doing that may be valuable to them.

John Elder Robison: When they say things to me, I can say, “Hey, there’s another person doing something that’s complimentary to you.” Then I can make those connections where perhaps other scientists wouldn’t feel that freedom to do it.

Frampton Gwynette: Exactly.

John Elder Robison: I guess that’s a valuable thing.

Frampton Gwynette: It really is. It’s a great contribution. Almost as an accelerant or a facilitator.

John Elder Robison: I’m able to connect autistic people to our scientists and that makes science better and it makes life better for the autistic folks. I think that that’s a good use of those traits.

Frampton Gwynette: Yeah. As you were talking, I was… I had an image of like a point guard in basketball because we can’t all be shooters and three points specialists and people who slam dunk, we need point guards too who can distribute, facilitate. And so everyone has a role.

John Elder Robison: I don’t actually know what a point guard does. I watch basketball, but I don’t actually know any of the position.

Frampton Gwynette: I guess like a distributor captain and automotive world. Sends the energy around.

John Elder Robison: All right.

Frampton Gwynette: Yeah.

John Elder Robison: Whoa.

Frampton Gwynette: Yeah. But in speaking of autism research and shaping that, I know that you feel strongly that the direction where autism research goes should be influenced by people who have autism themselves. Is that correct? And can you clarify on that?

John Elder Robison: I actually think that the direction of autism research should be determined by autistic people. I think that there is a… you would be very hard pressed to find somebody who should say policy towards first nations people in Canada should be determined by white people. Policy towards Jewish people in our city should be determined by the Catholic bishop.

John Elder Robison: Do you think you would find anyone who would take those positions seriously?

Frampton Gwynette: Highly unlikely.

John Elder Robison: Why would you think that there would be any other answer that research policy about autistic people should be guided by autistic people. What other answer is there if you believe in other such tenants?

Frampton Gwynette: Yeah. I think you make a great point. That’s led to a growing role for you nationally, internationally on committees that have influence over the direction of research. I believe one of your committees, is it the IAAC that reports to the secretary of health?

John Elder Robison: Yeah.

Frampton Gwynette: Right. Yeah. What’s it like being in that world, that DC world? Has that been hard to learn your way around those channels?

John Elder Robison: No, I just fly to Washington and I go to the committee meetings and I talk to the people. I just go there and talk to people like I do talking to you or talking to people anywhere else.

Frampton Gwynette: Yeah, I think it’s a great thing that you’re engaging with that and leading that discussion. Because it’s very important because there are examples and as a physician I was educated on things like Tuskegee, which involved a vulnerable population of African Americans in Alabama who were subjects of research being conducted mostly by white doctors. You can see extreme examples of how dangerous it can be when stakeholders don’t have a voice.

John Elder Robison: I think that’s true and I think that for quite a long time parents appeared before government committees speaking on behalf of autistic children, just as parents have spoken on behalf of their children in many contexts for a long time.

John Elder Robison: Originally autism was thought of as a childhood disability, so that was the expected action. But now that we understand that autism is a lifelong developmental difference it stands to reason that the autistic community should be significantly represented by actually autistic adults.

John Elder Robison: That doesn’t mean that parents don’t have a place in something to add. They absolutely do. Of course, many older autistic adults like me are also parents of children so many of whom are autistic. But I absolutely think that the community should determine the priorities for the community.

Frampton Gwynette: Absolutely.

John Elder Robison: That is not up to other people to impose on us. That’s a basic human rights issue. It’s not an autism issue.

Frampton Gwynette: Yeah. I feel like you’re speaking, I have goosebumps and I… because I feel like you’re speaking not only to our audience, but also our Autism News Network participants, because we really tried to focus our work on what’s important to them, not what’s important to me, what’s important to them. I think that’s why we’re making great progress.

John Elder Robison: I think that’s absolutely true. I think that what all of your viewers should consider is when you see a news story and they characterize an autistic person as doing something, you ask yourself what would happen if you substituted black or Jewish for autistic in that story, when that story of run on the news?

John Elder Robison: In most cases the answer’s no. The reason that that story wouldn’t have run is that those communities have powerful, passionate advocates who won’t stand for it. They will inspire other members of the community to rise up.

John Elder Robison: They will overwhelm television stations and newspapers with complaints. They will overwhelm government with complaints. In doing so, they enforce their civil rights.

Frampton Gwynette: Absolutely.

John Elder Robison: I think that we, autistic people have to do the same thing because we are just as large a minority as any other group in America. We should have the same standing.

Frampton Gwynette: Absolutely.

John Elder Robison: Absolutely. I think that to bring this into focus, you really have to bear in mind that this isn’t about childhood disability. It’s about lifelong difference.

Frampton Gwynette: Right. Right on point.

John Elder Robison: Sure.

Frampton Gwynette: Autism does not end in childhood is a lifelong condition, lifelong path. Yeah, absolutely. Yeah. I mean that’s just absolutely great. I wanted to switch gears now to talk about one of your passions. You have a lot, but one of them is cars and you mentioned the restoration shop. Can you tell our audience a little bit about what kind of cars you like to work on?

John Elder Robison: Well, we… 30 some years ago I felt that I needed a career that I could pursue from my home in Western Massachusetts and I wanted to do something where no one would question where I came from.

John Elder Robison: There would be no issue of was I a real engineer or realness or that because a lot of us autistic folks wrestle with that legitimacy. I decided that I would fix cars and that soon morphed into thinking I wanted to work on cars for people who cared about them because I soon saw that many people don’t really care about fixing their car other than making it drive again at minimum cost.

John Elder Robison: I didn’t fit that. I moved from fixing cars to restoring cars. I moved quickly into restoring high end cars where there was a lot of detail and craft work. Then I progressed into creating what you might call automotive art.

John Elder Robison: Most of what we do is, we do Rolls-Royce, Bentley, Jaguar, Land Rover, we do some American, we do some Italian. We have some German cars. But we build them for clients all over that show them and drive them, run them in expeditions and vintage race and all kinds of different stuff.

Frampton Gwynette: Yeah. Wow. They’ll come in and say, “Hey, this car is 50 years old. It’s in pretty good shape, but it needs good bit of work to get up to the top condition.” You guys do develop… almost like a care plan. “This is what I’ve proposed and this is the cost and this is where we get the parts.” Is that want you to do?

John Elder Robison: Yeah, it’s a lot like restoring an old house. Someone says, “Well, I want to fix this car up.” Usually the car has some kind of significance. Maybe it’s the car you took your wife on a first date or it’s the car that you drove in a race or something somewhere, or it’s the car that your dad gave you when you graduated from college.

John Elder Robison: Now it’s all these years later, it’s all run down and you want to make it new again. Or maybe it’s a car that’s like that, you bought it because the original car is gone. We’ll inspect it and make a list of what we need to do and we’ll make a plan and then we start down the road and every week we work on it, we send you a summary of what we did, we send you pictures.

John Elder Robison: It’s just like you’re there looking at it with us. Many of the people we restore the cars for, we never even meet them until the end.

Frampton Gwynette: Wow.

John Elder Robison: We do these huge jobs and cars come and go and it’s all done now by email and phone.

Frampton Gwynette: It has to be a lot of fun.

John Elder Robison: It’s cool to do. Yeah. I like doing it.

Frampton Gwynette: Yeah. Do you have any particular vintage or type of car that you’d like to drive yourself?

John Elder Robison: Well I’ve had all those high end cars we work on because when I was first starting out, if you wanted somebody to believe you could fix their Rolls-Royce, you needed to drive one to a Rolls-Royce club event, be seen in them. Of course now in the Rolls-Royce and Bentley world, I’m the technical editor for the national clubs and I-

Frampton Gwynette: Is that right?

John Elder Robison: … write the articles for the magazines and I write stuff for the factory. I don’t really need to demonstrate that. I am knowledgeable by driving one to an event, but I still have the cars.

Frampton Gwynette: You started out, you wanted to start a career where you didn’t have to be an expert and here you are 30 years later you are the expert.

John Elder Robison: Yeah. It’s funny that I… I think that I’ve qualified myself in a variety of fields on a public stage. I’ve qualified myself by writing about autism, both in peer reviewed journals and in books for the public. I qualify myself through my service and formulating autism policy in government.

John Elder Robison: I qualify myself with cars. Winning on big show feels like the Concours of America or Greenwich or Newport and I… yeah, I guess that’s true. It’s a harder road to do that than it is to go to college, I think.

Frampton Gwynette: Yeah. Really is because you have to be in the trenches doing it and all that expertise, just doing it yourself.

John Elder Robison: Yeah, sure. But yeah, that’s true I guess so.

Frampton Gwynette: Yeah. You and I had a funny exchange a couple of nights ago talking about Bluetooth technology and half a million dollar cars or really expensive cars compared to other cheaper cars, maybe that have Bluetooth connectivity that might be a little bit better. Can you just, without naming any names, can you just give the gist of what that conversation was about?

John Elder Robison: Well, yeah, I had a $300,000 sedan to drive to an event in New York and I discovered that it didn’t have the current plugs to connect to my generation of iPhone. When it did get connected with an adapter, it didn’t work very well and the navigation, it wasn’t able to run like the mapping app in the phone. It ran a map app that happened to be out of date and didn’t have traffic on it.

Frampton Gwynette: Oh, boy.

John Elder Robison: Yet the parent company, sells $30,000 cars that have all those features. I said to the marketing rep, I said, “It’s a serious problem.” He said, “Well, people who buy cars at that price point, don’t care about those kinds of things.” I thought, “That’s crazy. Of course they care about those things. They buy those cars for their kids and for themselves and you sell them their big brother and it doesn’t have any of that. What do they think?”

John Elder Robison: Yeah, sometimes I see funny things but it’s true that cars today are so dependent on technology. The choice, when I came to INSAR my choice of what vehicle I drove here of all the cars I have back there was a 2017 Chevy truck because the Chevy has absolutely first-class Bluetooth and in-car entertainment navigation and all the services work… when I drive over the Canadian border switches to metric instrumentation-

Frampton Gwynette: That was cool. That was cool.

John Elder Robison: That and it’s really nice and convenient.

Frampton Gwynette: And has the app.

John Elder Robison: Yeah, it has the app, I can find it. But at the same time, I recognize that that car in 10 years will be dated and all that stuff will be obsolete, whereas a 1970 Rolls-Royce convertible has none of any of those features, and it will always be timeless. 50 years from now it’ll still be an elegant vintage Rolls-Royce. Nobody looks at a car like that for navigation or satellite radio.

Frampton Gwynette: That’s right.

John Elder Robison: But I think that that’s an old one, not a new one. People absolutely look at a new Rolls-Royce and expect new car features.

Frampton Gwynette: Yeah, for sure. I wanted to go back and you had… I just picked up on something you had talked about your son, I know you wrote a book about… is it… it’s about Raising Cubby.

John Elder Robison: Yeah.

Frampton Gwynette: Yeah. For those of us who haven’t read the book, can you just describe why did you write it?

John Elder Robison: Well, a lot of the books about parenting autistic children are either really horrific in terms of descriptions of this really disabled, wild, crazy child or they are portrayals of martyr parents are heroic parents that overcome these tremendous obstacles of the disabled child and the uncooperative school and everyone is arrayed against you.

John Elder Robison: I thought, what a bleak picture. I thought that there were some fundamental truths that parents needed to read. For example, in Raising Cubby, I explain how to get your child access to nuclear power plants and freight yards and trains. I reveal the truth about Santa. I reveal the dark secrets behind the Easter Bunny.

John Elder Robison: These are things that parents and kids need to know and they don’t appear in any of those books. Raising Cubby is a fundamentally different tale of parenting. It is also one of the only… and it’s certainly the first tale of an artistic parent and an autistic son. It’s unique in that respect.

Frampton Gwynette: Yeah, yeah, absolutely. Just looking back at all your achievements, and I’m sitting here in awe of all that you’ve done, how do you… you have so many things going, how do you keep from getting overwhelmed? I easily get overwhelmed just pumping emails, for instance, or this or that. But how do you do it all?

John Elder Robison: Well, I do rely on other people to do a lot of stuff for me. That may be an autistic thing, but in my government service for example there’s a support staff at the interagency autism coordinating committee and they make all my plane reservations and hotel reservations and all I have to do is follow the route they give me.

John Elder Robison: My speaking agents do the same thing when I go speak places. When I do things like here at INSAR, people always will support me. They’ll help make sure I get to things and I don’t miss them. I think that it’s invisible.

John Elder Robison: Maybe some people don’t need that help, but people help me and it’s good. It works. I guess I feel like there’s a lot of people that I’m fortunate to have their goodwill and their desire that I succeed and I think it’s thanks to those efforts that I do.

Frampton Gwynette: Yeah, absolutely. I think you do so much work helping others that it just makes sense that other people want to help you progress and be at your full strength for these big moments like here at INSAR.

John Elder Robison: I mean, I guess you could say that they certainly do. I feel that people look out for me and I couldn’t do it if I was just entirely on my own.

Frampton Gwynette: Likewise. Yeah. Cool. Well, had a couple more just questions for you. As you know, our Autism News Network is based out of Charleston, South Carolina, and I understand that you spent some time there in the recent past. Were there any highlights to your trip to Charleston that are memorable for you?

John Elder Robison: Yeah, Charleston is the city where I discovered those feather bow ties. Do you remember the name of the company that makes those?

Frampton Gwynette: No, but I can find it. They’re really slick, aren’t they?

John Elder Robison: Yeah, it was feathered bow ties. Really cool. I got four or five of them-

Frampton Gwynette: You did? Yeah.

John Elder Robison: … and I wear them to a lot of events now.

Frampton Gwynette: Thyre a unique piece.

John Elder Robison: Yeah. That was a cool thing in Charleston.

Frampton Gwynette: I bet I could guess where you got there. I bet you got them at Dumas is on King street.

John Elder Robison: I might’ve, I don’t remember where I got them, but I… yeah, those were really good and I would say that’s a good memory of Charleston.

Frampton Gwynette: Yeah. Awesome. Well, we’d love to have you come down if you’re in the area again and visit our studio and see what we’re all about.

John Elder Robison: Yeah.

Frampton Gwynette: Yeah. Um, on that note, are there any particular topics or advice that you’d have for our participants in terms of stories they might pursue?

John Elder Robison: I think that if you look at my life where when I left home and I joined a rock ’n’ roll band and I taught myself engineering and I became an engineer and then I started doing cars, then I took up photography and then I decided to write books and then I took up autism advocacy after that, that seems like a lot of things, but to me, it’s not necessarily a lot of things because I taught myself what I needed to know in every case.

John Elder Robison: I would contrast that with a fellow who goes through conventional education and you go to the high school, then college and grad school and you get a doctorate and you’ve invested.

Frampton Gwynette: All the time and money. Yeah.

John Elder Robison: Yeah. You’re almost 30 years old. You got this huge investment and money and potentially hundreds of thousands of dollars of student loan debt and you’re absolutely committed to be this thing you got trained to be, even if you by that time are sick of it.

John Elder Robison: Whereas I have always taught myself on the role what I needed to know and I have never been burdened by that. I’ve never been held back since I was never educated as a medical doctor. There was nothing to stop me being a car mechanic.

John Elder Robison: Since I was never educated as a car mechanic, nothing stopped me from being a photographer. Yet people see themselves hemmed in by these educational qualifications. Today, someone like me is unusual today, but people like me with a rule, not the exception among educated people 200 years ago, most people of that time were self educated and if they were self educated, they were educated generally in a wide array of fields.

Frampton Gwynette: Absolutely.

John Elder Robison: I suspect that even as you look at me and you say, “Well, that’s a really unusual life trajectory.” That’s true in today’s context, that doesn’t mean that many autistic people couldn’t do the same thing.

John Elder Robison: But sometimes I feel like it’s harder because you don’t have the support, you don’t have a safety net of an educational qualification in a certain area. I think that can be harder, but it’s also liberating.

Frampton Gwynette: Yeah. Sometimes that safety net can be not a noose, but almost like walking the plank because, “Hey, I’m $300,000 in debt. I have to keep going to this type of school so I can earn money to pay my loans off.”

John Elder Robison: Yeah. I think that’s a really a really unfortunate state of affairs.

Frampton Gwynette: Yeah. It really is. Great. Well, I’m going to ask you one more question. I almost didn’t even want to ask this on camera, but as you were talking, I was just thinking about somebody I care a lot about and he’s an adult with autism and he’s been struggling with obesity for a long time, he is going to have weight loss surgery on May 20th.

Frampton Gwynette: I’ve been thinking about him well I’ve been up here because I know he’s anxious about that, but do you have any… for this young man with autism, do you have any advice for him as he’s anticipating the surgery a couple of weeks from now? Just thoughts off the top of your head.

John Elder Robison: I think that we, autistic people are less aware of our bodies and we’re more vulnerable to poor health outcomes because of it. I have same problem of eating too much, but to a lesser extent.

John Elder Robison: I find myself at risk for diabetes and heart trouble and stuff over it. I feel that a non-autistic person would likely be more aware and might be therefore less vulnerable.

John Elder Robison: I guess all I can say is that if you can internalize the idea that we are more vulnerable in that way and you can pay more attention, that doesn’t of course eliminate your limited awareness, but if you are aware you have limited awareness, you at least can act on it rather than just proceed ahead until you crash.

John Elder Robison: I guess I think that while operation like that might make you thinner in the short term, I think that it speaks to a need to recognize what’s going on in our bodies and regulate ourselves.

John Elder Robison: I think for autistic people, for a lot of us that is really hard to do. Yet when I look at the statistics that suggest that autistic adults have significantly more health problems in this area, it is an obvious area of concern for autistic people as a whole.

Frampton Gwynette: Exactly.

John Elder Robison: I don’t know what to say other than if the science says we should be mindful of that.

Frampton Gwynette: Yeah. I think that’s a great point because really in the end, this international meeting for autism research is in the end about health.

John Elder Robison: That’s what it is. Yeah. It’s about learning these kinds of things that we would not otherwise know. Like in my case, the title of my first book Look Me In The Eye was because people always would say, “Look at me when I’m talking to you.” I would look up and I would look away and how could I ever know that people could just gaze into each other’s eyes because their neurology was different from me.

Frampton Gwynette: Right.

John Elder Robison: No matter how smart I am, I could never deduce that from things people said to me. Learning that from a mental health professional was just transformative. Yeah. I think INSAR is all about making those discoveries that we can communicate to the community and make other differences a similar magnitude in people’s lives.

Frampton Gwynette: Absolutely. Well said. John, I wanted to tell you that I am scratching an item off my bucket list, this August, 2019, I’m dragging my wife to a KISS concert and this supposedly is the end of the line tour, the final, final tour for these guys who are 70 years old, they don’t have any hip transplants they’ve had or whatnot. But apparently there’s going to be lots of pyrotechnics and also music. I am a KISS fan musically, but I understand you go back in terms of technology and sound and help develop some of the music technology that they’ve put into use. Can you tell us about that?

John Elder Robison: In the 1970s I worked first for local bands and then I worked for bigger and bigger bands and started working for sound companies who lease sound equipment to rock ‘n’ roll tours. I was hired by Britannia Row, who was the sound company formed by Pink Floyd to lease out their equipment when the Floyd wasn’t on tour.

John Elder Robison: Actually that was what first brought me to Montreal. As an adult I had my a 21st birthday ride, the ferry to corner Brook, Newfoundland-

Frampton Gwynette: Wow.

John Elder Robison: … play in the first glance tour with April Wine, their big band in Canada and we came back up here with Gino Vannelli with Rush Dunhill and Phoebe snow. We had bunch of Canadian acts. In the United States, the thing I’m best known for is we put together a monitor system for KISS for one of their tours in seventies.

John Elder Robison: I got talking to Ace Frehley, the lead guitar player, and he asked if I could make his guitar blow fire. I said, “Well, yeah, sure.” We hollered out Les Paul guitar, we put a stainless steel box in it, we insulated it and we put in smoke bombs and high powered lights and the thing burned so hot that it would pop the strings right off the guitar-

Frampton Gwynette: Oh my God.

John Elder Robison: … and it would cover the stage and smoke and we went on and we made a whole bunch of special effects guitars, all the ones you saw KISS play and like you see them now in the videos from the 70s-

Frampton Gwynette: Wow, I had no idea.

John Elder Robison: … that light up and shoot rockets and explode and stuff. That was one of the better known things I did in music.

Frampton Gwynette: That’s amazing.

John Elder Robison: What was really cool is one of the more famous of those guitars was a light guitar that we built for a song New York groove. It was a disco era KISS hit. Ace stopped playing the guitar when it broke in the early eighties.

John Elder Robison: About eight years ago he called me up and he asked me if we could resurrect the guitar.

Frampton Gwynette: Whoa.

John Elder Robison: I went down to Jersey and got it from his manager and it was just a wreck. It’s all beat up and stuff and gutted. But I thought, well my ex wife who built it with me was interested in doing it and our son was… at that point he was like a grown up and he could solder and we thought he could do it because I couldn’t see up close anymore to do the soldering.

John Elder Robison: They took on the guitar task, which stored it with all the old parts. Then my son’s mom, she got sick with cancer and she died. We were at a loss a little bit, but I turned to one of my other old friends in engineering, Bob Jeff White, and he and my son finished putting the guitar together. Ace played that thing before 10,000 people back in 2015. I never thought I would see that guitar play again. It was the coolest thing.

Frampton Gwynette: Unbelievable.

John Elder Robison: The audience just roared for it just like they did back in the 70s.

Frampton Gwynette: I cannot believe that you-

John Elder Robison: That was just a cool thing to see.

Frampton Gwynette: Oh. You were that guy because I read Ace Frehley’s autobiography recently called No Regrets and he was talking about how he works so hard because it’s…

John Elder Robison: I did those… Yeah. It was all me making those things.

Frampton Gwynette: Unbelievable.

John Elder Robison: Yeah.

Frampton Gwynette: You must have been having a great time. Yeah.

John Elder Robison: Yeah, so that was a really cool thing.

Frampton Gwynette: When he would play, would you be behind stage watching it to make sure everything was going… or you’d be in-

John Elder Robison: A lot of them, I would run with radio control.

Frampton Gwynette: Okay.

John Elder Robison: Smoking stuff. I would… he would play it and I would do the radio control operation off to the side.

Frampton Gwynette: It’s kinda of like a… almost like a RC car. We had those-

John Elder Robison: Yeah, that’s right, chip.

Frampton Gwynette: Wow. I’ll tell you what, I don’t think people… young kids these days, these young kids in the music, I don’t think they can fully appreciate the complete domination that KISS had over major parts of the 70s in terms of record sales and the amount of tickets they sold-

John Elder Robison: We… Those shows were a really intense experience because the pyrotechnics… you went to one of those concerts and the pyro that we set off, it would just rock you back on your heels.

John Elder Robison: It was a powerful show.

Frampton Gwynette: Wow.

John Elder Robison: It was a cool thing to have done back then.

Frampton Gwynette: Yeah. Yeah, it’s never been duplicated.

John Elder Robison: I used it against the law. Now, they won’t let you carry all those explosives across borders on planes and stuff. We used to set off more explosives than most towns do on the 4th of July, and we’d do it every single show.

Frampton Gwynette: Routinely. Oh man. That is something else. Well, I’m glad that we talked about that.

John Elder Robison: Yeah.

Frampton Gwynette: Yeah. Cool. I’ll tell you how the concert goes.

John Elder Robison: All right. We’ll see, yeah. All right.

Frampton Gwynette: Yeah. Thanks John. This is John Elder Robison, you’re watching the Autism News Network from Montreal, Canada. Thank you.

Frampton Gwynette: I’m Frampton Gwynette with the Autism News NetWORK here with John Elder Robison from Montreal, Quebec, Canada. John, thanks for being here.

John Elder Robison: Yes, thanks for inviting me to speak with you here at a conference. Yeah.

Frampton Gwynette: Absolutely. For those of you who aren’t familiar, John is a bestselling author. He’s also an international leader in autism advocacy and he sits on multiple national and international organizations.

Frampton Gwynette: He also has his own business, which I definitely want to talk to him about during the course of our discussion. But John, one of the things I saw just in reading in preparation for the interview is that, as one of the leading voices in advocacy for autism, you, and correct me if I’m wrong, but you believe that autism shouldn’t be viewed as a ‘problem’. Can you expand on that?

John Elder Robison: I think that people use language around autism, like the autism crisis or the autism problem, the autism epidemic to present autism as a defect in us. By presenting it in that light, we are made to appear less than other humans.

John Elder Robison: There’s no doubt that autism confers challenges. For some of us, it also confers exceptionality. You could say that disabilities are problems, but that doesn’t mean that autism is a problem or autistic people are a problem. I think that’s the thing that I am careful to point out.

Frampton Gwynette: Yeah, absolutely. More of a focus on what someone can do, not what they cannot do. I work with a lot of patients who have had such a hard time with acceptance in groups, and I think also they have trouble accepting themselves because they’re told from the outside that, “Hey, X, Y and Z or wrong about you, it needs to be fixed.

John Elder Robison: Well, that is really a fundamental problem in our society. An autistic person like me, we all grew up with kids on the playground telling us what they imagined was wrong with us. We were stupid or defective.

John Elder Robison: Autistic kids who had more visible challenges were in some cases tormented even more. We heard that right from the very beginning. Then we had problems in school, problems making friends and at some point someone evaluated us and said, “Well, you have this autism thing.”

John Elder Robison: On one hand it can be an enlightenment and a relief to have a nonjudgmental description for why you’re different. If that comes after a lifetime of being told you’re less than other people, you still suffer a considerable amount of harm beforehand. I think that is a real big societal problem.

Frampton Gwynette: Mm-hmm (affirmative). Absolutely. In our Autism News Network program, our content has migrated into almost exclusively firsthand accounts of topics that are interesting to our participants. One of the big topics that always comes up is bullying and its impact throughout their life.

Frampton Gwynette: I don’t think that people really understand how deeply that can affect someone’s life course and self esteem. I think you’ve tapped into something very important there.

John Elder Robison: I also think that when you talk about bullying, kids telling other kids like me that we’re stupid or retarded or mental or any number of other names that kids had for me when I was five years old, I think if you asked them, they would say, “I wasn’t bullying him, I wasn’t beating him up, I wasn’t doing this or that.”

John Elder Robison: I think that even now sometimes doctors and clinicians will talk about us in the third person as suffering from autism. Reporters often describe us that way, suffering from disability.

John Elder Robison: I think that those are all things that diminish us even if the person means no harm by saying and I’m sure that a doctor report or doesn’t mean a sale.

Frampton Gwynette: Yeah.

John Elder Robison: But that’s still the harmful effect.

Frampton Gwynette: Yeah. You’ve done something that I wish I could do, which is you’ve written a book, you actually written multiple books and one of the things I was hoping our audience will take away is just the sense that if you can do it they can do it, but what are the sacrifices needed to be an author and to finish a book and how do you… you’re so busy, how do you… What’s your workflow like to get that book out the door?

John Elder Robison: Well, like a lot of autistic people. I have these ADHD traits also. In a kid you might say they were bouncing off the wall and couldn’t sit still. In me I will open up the computer and I’ll write a few paragraphs of an idea for my book and then I’ll walk out the shop and talk about jobs they have in process and I’ll talk to somebody on the phone and then I’ll open up the computer and I’ll write a few paragraphs about an article about cars and I’ll just constantly do one thing after another and eventually the work product’s finished and there are articles written and there are books and I’ve talked to people and I just keep doing all of the things. I don’t see it as a sacrifice.

Frampton Gwynette: Yeah. You’re moving around from activity activity, but you are persistent in the longterm over the months and the years to make sure that these various projects get done

John Elder Robison: Well, I think they traits that are involved are common to autistic people. I think the ADHD trait of bouncing from one thing to another is common, although some autistic people are the opposite.

John Elder Robison: They can’t do that. But a lot of them are like me and they have that. I have that really deep concentration. In a child they called that a restricted… an intense interest.

Frampton Gwynette: Mm-hmm (affirmative). Sure.

John Elder Robison: But in an adult like me, I study and research things more intensely and in an adult, the word for it would be he does a better job.

Frampton Gwynette: Yeah.

John Elder Robison: I think a good number of autistic people share that characteristic also. But I think it’s note worthy that a lot of autistic people who have those characteristics have only heard them described in the context of disability, not exceptionality and yet they’re really both.

Frampton Gwynette: Yeah. As you’re talking, I’ve just thought of the word creative or artist because a lot of artists may move from project to project but you’re creating a book here. I want to talk about your automotive work that you’re doing. You’re really have skills in so many areas and you’re about creating things. Would you ever go as far as to say sometimes those ADHD moments could be also bursts of creativity?

John Elder Robison: Yeah, there probably are. I think what I do is I do have ideas and I have a gift for expressing them, whether I express them through my written words or through photography or through automotive art that we create in our restoration shop.

John Elder Robison: Those are all bursts of creativity, I suppose. Yeah.

Frampton Gwynette: Yeah.

John Elder Robison: I think that that’s what I do. I’m not a researcher. But my place here in INSAR is to connect researchers.

Frampton Gwynette: Yeah.

John Elder Robison: Because I am not a researcher. I’m not a competitive threat to any scientist here. They’ll all talk to me. As an autistic person, I have a different perspective on what they’re doing that may be valuable to them.

John Elder Robison: When they say things to me, I can say, “Hey, there’s another person doing something that’s complimentary to you.” Then I can make those connections where perhaps other scientists wouldn’t feel that freedom to do it.

Frampton Gwynette: Exactly.

John Elder Robison: I guess that’s a valuable thing.

Frampton Gwynette: It really is. It’s a great contribution. Almost as an accelerant or a facilitator.

John Elder Robison: I’m able to connect autistic people to our scientists and that makes science better and it makes life better for the autistic folks. I think that that’s a good use of those traits.

Frampton Gwynette: Yeah. As you were talking, I was… I had an image of like a point guard in basketball because we can’t all be shooters and three points specialists and people who slam dunk, we need point guards too who can distribute, facilitate. And so everyone has a role.

John Elder Robison: I don’t actually know what a point guard does. I watch basketball, but I don’t actually know any of the position.

Frampton Gwynette: I guess like a distributor captain and automotive world. Sends the energy around.

John Elder Robison: All right.

Frampton Gwynette: Yeah.

John Elder Robison: Whoa.

Frampton Gwynette: Yeah. But in speaking of autism research and shaping that, I know that you feel strongly that the direction where autism research goes should be influenced by people who have autism themselves. Is that correct? And can you clarify on that?

John Elder Robison: I actually think that the direction of autism research should be determined by autistic people. I think that there is a… you would be very hard pressed to find somebody who should say policy towards first nations people in Canada should be determined by white people. Policy towards Jewish people in our city should be determined by the Catholic bishop.

John Elder Robison: Do you think you would find anyone who would take those positions seriously?

Frampton Gwynette: Highly unlikely.

John Elder Robison: Why would you think that there would be any other answer that research policy about autistic people should be guided by autistic people. What other answer is there if you believe in other such tenants?

Frampton Gwynette: Yeah. I think you make a great point. That’s led to a growing role for you nationally, internationally on committees that have influence over the direction of research. I believe one of your committees, is it the IAAC that reports to the secretary of health?

John Elder Robison: Yeah.

Frampton Gwynette: Right. Yeah. What’s it like being in that world, that DC world? Has that been hard to learn your way around those channels?

John Elder Robison: No, I just fly to Washington and I go to the committee meetings and I talk to the people. I just go there and talk to people like I do talking to you or talking to people anywhere else.

Frampton Gwynette: Yeah, I think it’s a great thing that you’re engaging with that and leading that discussion. Because it’s very important because there are examples and as a physician I was educated on things like Tuskegee, which involved a vulnerable population of African Americans in Alabama who were subjects of research being conducted mostly by white doctors. You can see extreme examples of how dangerous it can be when stakeholders don’t have a voice.

John Elder Robison: I think that’s true and I think that for quite a long time parents appeared before government committees speaking on behalf of autistic children, just as parents have spoken on behalf of their children in many contexts for a long time.

John Elder Robison: Originally autism was thought of as a childhood disability, so that was the expected action. But now that we understand that autism is a lifelong developmental difference it stands to reason that the autistic community should be significantly represented by actually autistic adults.

John Elder Robison: That doesn’t mean that parents don’t have a place in something to add. They absolutely do. Of course, many older autistic adults like me are also parents of children so many of whom are autistic. But I absolutely think that the community should determine the priorities for the community.

Frampton Gwynette: Absolutely.

John Elder Robison: That is not up to other people to impose on us. That’s a basic human rights issue. It’s not an autism issue.

Frampton Gwynette: Yeah. I feel like you’re speaking, I have goosebumps and I… because I feel like you’re speaking not only to our audience, but also our Autism News Network participants, because we really tried to focus our work on what’s important to them, not what’s important to me, what’s important to them. I think that’s why we’re making great progress.

John Elder Robison: I think that’s absolutely true. I think that what all of your viewers should consider is when you see a news story and they characterize an autistic person as doing something, you ask yourself what would happen if you substituted black or Jewish for autistic in that story, when that story of run on the news?

John Elder Robison: In most cases the answer’s no. The reason that that story wouldn’t have run is that those communities have powerful, passionate advocates who won’t stand for it. They will inspire other members of the community to rise up.

John Elder Robison: They will overwhelm television stations and newspapers with complaints. They will overwhelm government with complaints. In doing so, they enforce their civil rights.

Frampton Gwynette: Absolutely.

John Elder Robison: I think that we, autistic people have to do the same thing because we are just as large a minority as any other group in America. We should have the same standing.

Frampton Gwynette: Absolutely.

John Elder Robison: Absolutely. I think that to bring this into focus, you really have to bear in mind that this isn’t about childhood disability. It’s about lifelong difference.

Frampton Gwynette: Right. Right on point.

John Elder Robison: Sure.

Frampton Gwynette: Autism does not end in childhood is a lifelong condition, lifelong path. Yeah, absolutely. Yeah. I mean that’s just absolutely great. I wanted to switch gears now to talk about one of your passions. You have a lot, but one of them is cars and you mentioned the restoration shop. Can you tell our audience a little bit about what kind of cars you like to work on?

John Elder Robison: Well, we… 30 some years ago I felt that I needed a career that I could pursue from my home in Western Massachusetts and I wanted to do something where no one would question where I came from.

John Elder Robison: There would be no issue of was I a real engineer or realness or that because a lot of us autistic folks wrestle with that legitimacy. I decided that I would fix cars and that soon morphed into thinking I wanted to work on cars for people who cared about them because I soon saw that many people don’t really care about fixing their car other than making it drive again at minimum cost.

John Elder Robison: I didn’t fit that. I moved from fixing cars to restoring cars. I moved quickly into restoring high end cars where there was a lot of detail and craft work. Then I progressed into creating what you might call automotive art.

John Elder Robison: Most of what we do is, we do Rolls-Royce, Bentley, Jaguar, Land Rover, we do some American, we do some Italian. We have some German cars. But we build them for clients all over that show them and drive them, run them in expeditions and vintage race and all kinds of different stuff.

Frampton Gwynette: Yeah. Wow. They’ll come in and say, “Hey, this car is 50 years old. It’s in pretty good shape, but it needs good bit of work to get up to the top condition.” You guys do develop… almost like a care plan. “This is what I’ve proposed and this is the cost and this is where we get the parts.” Is that want you to do?

John Elder Robison: Yeah, it’s a lot like restoring an old house. Someone says, “Well, I want to fix this car up.” Usually the car has some kind of significance. Maybe it’s the car you took your wife on a first date or it’s the car that you drove in a race or something somewhere, or it’s the car that your dad gave you when you graduated from college.

John Elder Robison: Now it’s all these years later, it’s all run down and you want to make it new again. Or maybe it’s a car that’s like that, you bought it because the original car is gone. We’ll inspect it and make a list of what we need to do and we’ll make a plan and then we start down the road and every week we work on it, we send you a summary of what we did, we send you pictures.

John Elder Robison: It’s just like you’re there looking at it with us. Many of the people we restore the cars for, we never even meet them until the end.

Frampton Gwynette: Wow.

John Elder Robison: We do these huge jobs and cars come and go and it’s all done now by email and phone.

Frampton Gwynette: It has to be a lot of fun.

John Elder Robison: It’s cool to do. Yeah. I like doing it.

Frampton Gwynette: Yeah. Do you have any particular vintage or type of car that you’d like to drive yourself?

John Elder Robison: Well I’ve had all those high end cars we work on because when I was first starting out, if you wanted somebody to believe you could fix their Rolls-Royce, you needed to drive one to a Rolls-Royce club event, be seen in them. Of course now in the Rolls-Royce and Bentley world, I’m the technical editor for the national clubs and I-

Frampton Gwynette: Is that right?

John Elder Robison: … write the articles for the magazines and I write stuff for the factory. I don’t really need to demonstrate that. I am knowledgeable by driving one to an event, but I still have the cars.

Frampton Gwynette: You started out, you wanted to start a career where you didn’t have to be an expert and here you are 30 years later you are the expert.

John Elder Robison: Yeah. It’s funny that I… I think that I’ve qualified myself in a variety of fields on a public stage. I’ve qualified myself by writing about autism, both in peer reviewed journals and in books for the public. I qualify myself through my service and formulating autism policy in government.

John Elder Robison: I qualify myself with cars. Winning on big show feels like the Concours of America or Greenwich or Newport and I… yeah, I guess that’s true. It’s a harder road to do that than it is to go to college, I think.

Frampton Gwynette: Yeah. Really is because you have to be in the trenches doing it and all that expertise, just doing it yourself.

John Elder Robison: Yeah, sure. But yeah, that’s true I guess so.

Frampton Gwynette: Yeah. You and I had a funny exchange a couple of nights ago talking about Bluetooth technology and half a million dollar cars or really expensive cars compared to other cheaper cars, maybe that have Bluetooth connectivity that might be a little bit better. Can you just, without naming any names, can you just give the gist of what that conversation was about?

John Elder Robison: Well, yeah, I had a $300,000 sedan to drive to an event in New York and I discovered that it didn’t have the current plugs to connect to my generation of iPhone. When it did get connected with an adapter, it didn’t work very well and the navigation, it wasn’t able to run like the mapping app in the phone. It ran a map app that happened to be out of date and didn’t have traffic on it.

Frampton Gwynette: Oh, boy.

John Elder Robison: Yet the parent company, sells $30,000 cars that have all those features. I said to the marketing rep, I said, “It’s a serious problem.” He said, “Well, people who buy cars at that price point, don’t care about those kinds of things.” I thought, “That’s crazy. Of course they care about those things. They buy those cars for their kids and for themselves and you sell them their big brother and it doesn’t have any of that. What do they think?”

John Elder Robison: Yeah, sometimes I see funny things but it’s true that cars today are so dependent on technology. The choice, when I came to INSAR my choice of what vehicle I drove here of all the cars I have back there was a 2017 Chevy truck because the Chevy has absolutely first-class Bluetooth and in-car entertainment navigation and all the services work… when I drive over the Canadian border switches to metric instrumentation-

Frampton Gwynette: That was cool. That was cool.

John Elder Robison: That and it’s really nice and convenient.

Frampton Gwynette: And has the app.

John Elder Robison: Yeah, it has the app, I can find it. But at the same time, I recognize that that car in 10 years will be dated and all that stuff will be obsolete, whereas a 1970 Rolls-Royce convertible has none of any of those features, and it will always be timeless. 50 years from now it’ll still be an elegant vintage Rolls-Royce. Nobody looks at a car like that for navigation or satellite radio.

Frampton Gwynette: That’s right.

John Elder Robison: But I think that that’s an old one, not a new one. People absolutely look at a new Rolls-Royce and expect new car features.

Frampton Gwynette: Yeah, for sure. I wanted to go back and you had… I just picked up on something you had talked about your son, I know you wrote a book about… is it… it’s about Raising Cubby.

John Elder Robison: Yeah.

Frampton Gwynette: Yeah. For those of us who haven’t read the book, can you just describe why did you write it?

John Elder Robison: Well, a lot of the books about parenting autistic children are either really horrific in terms of descriptions of this really disabled, wild, crazy child or they are portrayals of martyr parents are heroic parents that overcome these tremendous obstacles of the disabled child and the uncooperative school and everyone is arrayed against you.

John Elder Robison: I thought, what a bleak picture. I thought that there were some fundamental truths that parents needed to read. For example, in Raising Cubby, I explain how to get your child access to nuclear power plants and freight yards and trains. I reveal the truth about Santa. I reveal the dark secrets behind the Easter Bunny.

John Elder Robison: These are things that parents and kids need to know and they don’t appear in any of those books. Raising Cubby is a fundamentally different tale of parenting. It is also one of the only… and it’s certainly the first tale of an artistic parent and an autistic son. It’s unique in that respect.

Frampton Gwynette: Yeah, yeah, absolutely. Just looking back at all your achievements, and I’m sitting here in awe of all that you’ve done, how do you… you have so many things going, how do you keep from getting overwhelmed? I easily get overwhelmed just pumping emails, for instance, or this or that. But how do you do it all?

John Elder Robison: Well, I do rely on other people to do a lot of stuff for me. That may be an autistic thing, but in my government service for example there’s a support staff at the interagency autism coordinating committee and they make all my plane reservations and hotel reservations and all I have to do is follow the route they give me.

John Elder Robison: My speaking agents do the same thing when I go speak places. When I do things like here at INSAR, people always will support me. They’ll help make sure I get to things and I don’t miss them. I think that it’s invisible.

John Elder Robison: Maybe some people don’t need that help, but people help me and it’s good. It works. I guess I feel like there’s a lot of people that I’m fortunate to have their goodwill and their desire that I succeed and I think it’s thanks to those efforts that I do.

Frampton Gwynette: Yeah, absolutely. I think you do so much work helping others that it just makes sense that other people want to help you progress and be at your full strength for these big moments like here at INSAR.

John Elder Robison: I mean, I guess you could say that they certainly do. I feel that people look out for me and I couldn’t do it if I was just entirely on my own.

Frampton Gwynette: Likewise. Yeah. Cool. Well, had a couple more just questions for you. As you know, our Autism News Network is based out of Charleston, South Carolina, and I understand that you spent some time there in the recent past. Were there any highlights to your trip to Charleston that are memorable for you?

John Elder Robison: Yeah, Charleston is the city where I discovered those feather bow ties. Do you remember the name of the company that makes those?

Frampton Gwynette: No, but I can find it. They’re really slick, aren’t they?

John Elder Robison: Yeah, it was feathered bow ties. Really cool. I got four or five of them-

Frampton Gwynette: You did? Yeah.

John Elder Robison: … and I wear them to a lot of events now.

Frampton Gwynette: Thyre a unique piece.

John Elder Robison: Yeah. That was a cool thing in Charleston.

Frampton Gwynette: I bet I could guess where you got there. I bet you got them at Dumas is on King street.

John Elder Robison: I might’ve, I don’t remember where I got them, but I… yeah, those were really good and I would say that’s a good memory of Charleston.

Frampton Gwynette: Yeah. Awesome. Well, we’d love to have you come down if you’re in the area again and visit our studio and see what we’re all about.

John Elder Robison: Yeah.

Frampton Gwynette: Yeah. Um, on that note, are there any particular topics or advice that you’d have for our participants in terms of stories they might pursue?

John Elder Robison: I think that if you look at my life where when I left home and I joined a rock ’n’ roll band and I taught myself engineering and I became an engineer and then I started doing cars, then I took up photography and then I decided to write books and then I took up autism advocacy after that, that seems like a lot of things, but to me, it’s not necessarily a lot of things because I taught myself what I needed to know in every case.

John Elder Robison: I would contrast that with a fellow who goes through conventional education and you go to the high school, then college and grad school and you get a doctorate and you’ve invested.

Frampton Gwynette: All the time and money. Yeah.

John Elder Robison: Yeah. You’re almost 30 years old. You got this huge investment and money and potentially hundreds of thousands of dollars of student loan debt and you’re absolutely committed to be this thing you got trained to be, even if you by that time are sick of it.

John Elder Robison: Whereas I have always taught myself on the role what I needed to know and I have never been burdened by that. I’ve never been held back since I was never educated as a medical doctor. There was nothing to stop me being a car mechanic.

John Elder Robison: Since I was never educated as a car mechanic, nothing stopped me from being a photographer. Yet people see themselves hemmed in by these educational qualifications. Today, someone like me is unusual today, but people like me with a rule, not the exception among educated people 200 years ago, most people of that time were self educated and if they were self educated, they were educated generally in a wide array of fields.

Frampton Gwynette: Absolutely.

John Elder Robison: I suspect that even as you look at me and you say, “Well, that’s a really unusual life trajectory.” That’s true in today’s context, that doesn’t mean that many autistic people couldn’t do the same thing.

John Elder Robison: But sometimes I feel like it’s harder because you don’t have the support, you don’t have a safety net of an educational qualification in a certain area. I think that can be harder, but it’s also liberating.

Frampton Gwynette: Yeah. Sometimes that safety net can be not a noose, but almost like walking the plank because, “Hey, I’m $300,000 in debt. I have to keep going to this type of school so I can earn money to pay my loans off.”

John Elder Robison: Yeah. I think that’s a really a really unfortunate state of affairs.

Frampton Gwynette: Yeah. It really is. Great. Well, I’m going to ask you one more question. I almost didn’t even want to ask this on camera, but as you were talking, I was just thinking about somebody I care a lot about and he’s an adult with autism and he’s been struggling with obesity for a long time, he is going to have weight loss surgery on May 20th.

Frampton Gwynette: I’ve been thinking about him well I’ve been up here because I know he’s anxious about that, but do you have any… for this young man with autism, do you have any advice for him as he’s anticipating the surgery a couple of weeks from now? Just thoughts off the top of your head.

John Elder Robison: I think that we, autistic people are less aware of our bodies and we’re more vulnerable to poor health outcomes because of it. I have same problem of eating too much, but to a lesser extent.

John Elder Robison: I find myself at risk for diabetes and heart trouble and stuff over it. I feel that a non-autistic person would likely be more aware and might be therefore less vulnerable.

John Elder Robison: I guess all I can say is that if you can internalize the idea that we are more vulnerable in that way and you can pay more attention, that doesn’t of course eliminate your limited awareness, but if you are aware you have limited awareness, you at least can act on it rather than just proceed ahead until you crash.

John Elder Robison: I guess I think that while operation like that might make you thinner in the short term, I think that it speaks to a need to recognize what’s going on in our bodies and regulate ourselves.

John Elder Robison: I think for autistic people, for a lot of us that is really hard to do. Yet when I look at the statistics that suggest that autistic adults have significantly more health problems in this area, it is an obvious area of concern for autistic people as a whole.

Frampton Gwynette: Exactly.

John Elder Robison: I don’t know what to say other than if the science says we should be mindful of that.

Frampton Gwynette: Yeah. I think that’s a great point because really in the end, this international meeting for autism research is in the end about health.

John Elder Robison: That’s what it is. Yeah. It’s about learning these kinds of things that we would not otherwise know. Like in my case, the title of my first book Look Me In The Eye was because people always would say, “Look at me when I’m talking to you.” I would look up and I would look away and how could I ever know that people could just gaze into each other’s eyes because their neurology was different from me.

Frampton Gwynette: Right.

John Elder Robison: No matter how smart I am, I could never deduce that from things people said to me. Learning that from a mental health professional was just transformative. Yeah. I think INSAR is all about making those discoveries that we can communicate to the community and make other differences a similar magnitude in people’s lives.

Frampton Gwynette: Absolutely. Well said. John, I wanted to tell you that I am scratching an item off my bucket list, this August, 2019, I’m dragging my wife to a KISS concert and this supposedly is the end of the line tour, the final, final tour for these guys who are 70 years old, they don’t have any hip transplants they’ve had or whatnot. But apparently there’s going to be lots of pyrotechnics and also music. I am a KISS fan musically, but I understand you go back in terms of technology and sound and help develop some of the music technology that they’ve put into use. Can you tell us about that?

John Elder Robison: In the 1970s I worked first for local bands and then I worked for bigger and bigger bands and started working for sound companies who lease sound equipment to rock ‘n’ roll tours. I was hired by Britannia Row, who was the sound company formed by Pink Floyd to lease out their equipment when the Floyd wasn’t on tour.

John Elder Robison: Actually that was what first brought me to Montreal. As an adult I had my a 21st birthday ride, the ferry to corner Brook, Newfoundland-

Frampton Gwynette: Wow.

John Elder Robison: … play in the first glance tour with April Wine, their big band in Canada and we came back up here with Gino Vannelli with Rush Dunhill and Phoebe snow. We had bunch of Canadian acts. In the United States, the thing I’m best known for is we put together a monitor system for KISS for one of their tours in seventies.

John Elder Robison: I got talking to Ace Frehley, the lead guitar player, and he asked if I could make his guitar blow fire. I said, “Well, yeah, sure.” We hollered out Les Paul guitar, we put a stainless steel box in it, we insulated it and we put in smoke bombs and high powered lights and the thing burned so hot that it would pop the strings right off the guitar-

Frampton Gwynette: Oh my God.

John Elder Robison: … and it would cover the stage and smoke and we went on and we made a whole bunch of special effects guitars, all the ones you saw KISS play and like you see them now in the videos from the 70s-

Frampton Gwynette: Wow, I had no idea.

John Elder Robison: … that light up and shoot rockets and explode and stuff. That was one of the better known things I did in music.

Frampton Gwynette: That’s amazing.

John Elder Robison: What was really cool is one of the more famous of those guitars was a light guitar that we built for a song New York groove. It was a disco era KISS hit. Ace stopped playing the guitar when it broke in the early eighties.

John Elder Robison: About eight years ago he called me up and he asked me if we could resurrect the guitar.

Frampton Gwynette: Whoa.

John Elder Robison: I went down to Jersey and got it from his manager and it was just a wreck. It’s all beat up and stuff and gutted. But I thought, well my ex wife who built it with me was interested in doing it and our son was… at that point he was like a grown up and he could solder and we thought he could do it because I couldn’t see up close anymore to do the soldering.

John Elder Robison: They took on the guitar task, which stored it with all the old parts. Then my son’s mom, she got sick with cancer and she died. We were at a loss a little bit, but I turned to one of my other old friends in engineering, Bob Jeff White, and he and my son finished putting the guitar together. Ace played that thing before 10,000 people back in 2015. I never thought I would see that guitar play again. It was the coolest thing.

Frampton Gwynette: Unbelievable.

John Elder Robison: The audience just roared for it just like they did back in the 70s.

Frampton Gwynette: I cannot believe that you-

John Elder Robison: That was just a cool thing to see.

Frampton Gwynette: Oh. You were that guy because I read Ace Frehley’s autobiography recently called No Regrets and he was talking about how he works so hard because it’s…

John Elder Robison: I did those… Yeah. It was all me making those things.

Frampton Gwynette: Unbelievable.

John Elder Robison: Yeah.

Frampton Gwynette: You must have been having a great time. Yeah.

John Elder Robison: Yeah, so that was a really cool thing.

Frampton Gwynette: When he would play, would you be behind stage watching it to make sure everything was going… or you’d be in-

John Elder Robison: A lot of them, I would run with radio control.

Frampton Gwynette: Okay.

John Elder Robison: Smoking stuff. I would… he would play it and I would do the radio control operation off to the side.

Frampton Gwynette: It’s kinda of like a… almost like a RC car. We had those-

John Elder Robison: Yeah, that’s right, chip.

Frampton Gwynette: Wow. I’ll tell you what, I don’t think people… young kids these days, these young kids in the music, I don’t think they can fully appreciate the complete domination that KISS had over major parts of the 70s in terms of record sales and the amount of tickets they sold-

John Elder Robison: We… Those shows were a really intense experience because the pyrotechnics… you went to one of those concerts and the pyro that we set off, it would just rock you back on your heels.

John Elder Robison: It was a powerful show.

Frampton Gwynette: Wow.

John Elder Robison: It was a cool thing to have done back then.

Frampton Gwynette: Yeah. Yeah, it’s never been duplicated.

John Elder Robison: I used it against the law. Now, they won’t let you carry all those explosives across borders on planes and stuff. We used to set off more explosives than most towns do on the 4th of July, and we’d do it every single show.

Frampton Gwynette: Routinely. Oh man. That is something else. Well, I’m glad that we talked about that.

John Elder Robison: Yeah.

Frampton Gwynette: Yeah. Cool. I’ll tell you how the concert goes.

John Elder Robison: All right. We’ll see, yeah. All right.

Frampton Gwynette: Yeah. Thanks John. This is John Elder Robison, you’re watching the Autism News Network from Montreal, Canada. Thank you.

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