Other People's Words

AWN interview with John Elder Robison

Posted in Uncategorized by Tera on June 22, 2010

This a transcript of Autism Women’s Network’s interview with John Elder Robison, author of Look Me in the Eye and a member of Autism Speaks’s Scientific Advisory Board.

[Music]

Sharon daVanport: Good evening, everyone, and welcome to AWN radio. This is the Autism Women’s Network on Blogtalk. I’m your host, Sharon daVanport; today is Thursday, June 10, 2010. With me tonight is co-host Tricia Kenney. How are you doing this evening, Trish?

Tricia Kenney: Hi, Sharon. How are you? I’m doing fine.

Sharon daVanport: Doing pretty good myself; doing well.

Tricia Kenney: I almost sang along with our intro song, but I caught myself. [Laughter]

Sharon daVanport: You have to remember that everybody can hear that, right? [Laughter]

Tricia Kenney: I know. [Laughter]

Sharon daVanport: They’ll hear you singing away. That’s okay. Oh, gosh. Wow. We have s really great show planned for you this evening. We have New York Times bestselling author of Look Me in the Eye, John Elder Robison. Before we get started, we do have a couple of announcements. I just wanted to give everyone a quick reminder that last week our guest, Lou Giuffre, president of LifePROTEKT, started a two-week contest on AWN radio for a lucky listener who will be receiving a GPS device and one year of service from LifePROTEKT.

The contest is still open; all you need to do to be eligible is to e-mail us your personal story as to why your family member will benefit from a GPS locator, and we’ll enter your name into the contest. The e-mail to send your story is info AT autismwomensnetwork DOT org. Just send us your story. We’re forwarding these stories on to Lou and your name will be entered in. We’re just going to be drawing a name, because these stories have just been so touching that I don’t wanna be the one to have to choose. We just decided we would do that.

Tricia Kenney: Yeah. We didn’t wanna make it look like we were choosing any one situation over another. These are all crucial situations; every loved one is worth just as much as the next. We wanted to make sure it was done blindly. It’s such an amazing gift that they’re doing for us and for these families, to give that free service and that device. We just see so many stories every day of children that go missing, and this is just one thing that you can do to help protect your family.

Sharon daVanport: Right. A lot of people have been saying: “Are they affiliated with Project Lifesaver?. Lou explained that LifePROTEKT is that company that can come in and fill in the gaps, where Project Lifesaver [may not be] in your community. Project Lifesaver is awesome. Lou has nothing but great things to say about them. But if there’s not a Project Lifesaver in your community, then you can have a location device like this, and it can fill in that gap where that’s needed for the special needs population. We will be announcing it next week.

Our show next weeks is gonna be at a little bit of a different time. It’s on Thursday, June 17. It’s gonna be at 10:00 AM Central, 11:00 AM Eastern. It’s with Dr. Shana Nichols. She’s just opened up a new clinic called ASPIRE, and that’s in New York. We’re looking forward to hearing about that. Dr. Shana Nichols is on our advisory board at the Autism Women’s Network, so we’re really proud to have her on next week and talk about that.

Tricia Kenney: It should be good.

Sharon daVanport: Yeah. I don’t wanna keep our guest waiting any longer. We’re gonna bring John on now. Are you with us, John?

John Elder Robison: I’m here. Yep.

Sharon daVanport: All right. Welcome to the show.

John Elder Robison: Woof.

Sharon daVanport: Woof. [Laughter] I forgot, that’s what you say: “Woof.”

Tricia Kenney: Hi, John.

Sharon daVanport: We have a lot of questions for you tonight, John. A lot going on. You’ve been very busy the last few months. I know that you’ve actually been talking recently about the book that you’re best known for. I know you have one coming out in the Spring of next year, but the one that you’re known for is Look Me in the Eye. Did I read correctly that it’s in its 24th US printing?

John Elder Robison: That is true; yes. 24 US printings.

Sharon daVanport: Wow, that’s amazing.

John Elder Robison: There are 24 editions now sold all over the world.

Sharon daVanport: Oh, wow. That’s really good, John.

Tricia Kenney: Yeah, it is. What an accomplishment.

Sharon daVanport: Look Me n the Eye, how would you explain that book if you were telling someone about it and why they might benefit from it?

John Elder Robison: Look Me in the Eye ia a collection of stories about my life growing up with this Asperger difference in a time when nobody knew about Asperger’s. I grew up in a free-range state, and I had to make my way in the world. With all of the memoirs that are, frankly, rather depressing about growing up with autism and Asperger’s, I think it’s a celebration of being different that can actually make you feel good about being non-standard.

Tricia Kenney: Time and time again, I see comments about your book stating how much people relate to how you grew up and the experiences that you had. To me, that’s just amazing. I would think that the things that you went through and the things that you got to experience are so unique. I’m really shocked when I hear how people relate to it so easily.

John Elder Robison: You’d think that, but then when you talk to people at length about it, like I have, they might relate to an experience like seeing music or something. Maybe they were gonna [unknown] a band, but they worked in a radio station. Or maybe they related to my experiences being a child in the playground at the Mulberry Tree School and they were at a similar school in Detroit. So people can relate to the stories I tell, even if they didn’t live out the very same stories themselves. They just relate to pieces of it.

Actually, it’s amazing to me that so many people have connected to the book in that way. You hear these stories about how every person with Asperger’s is different, and yet there are parts of that book where thousands of people can express that they felt the same way about parts of the story. That’s kind of fascinating, and what it shows is how there are maybe more similarities in Asperger people than we ever realized, and it’s just that nobody ever set forth a narrative of what they were like for other people to compare to. Now that there are these narratives out there, people read them and they say: “Hey, I’m like that, too.” All the sudden, we have that awareness that didn’t exist before.

Sharon daVanport: Right. I think that’s an important point. I think that the more that you tell your story, John, the more that those of us on the spectrum are sharing our personal experiences, I think that we find the more that we do that, the more feedback we get from others, saying: “Wow. I can relate to that.” Or: “I have a similar experience in my life.” I think that that’s bridging some of those gaps and those holes that we’ve seen for so long in the autism community. I see it coming together in a different way, the more that we’re out there doing that.

John Elder Robison: I think another important thing that happens when a story like mine becomes popular with the general public is that other people thinking about telling their stories can look at how stories like mine are discussed or received online and elsewhere. People can see that generally positive responsive response, and [theirs are?] just like mine, that liberates other people to tell their own stories and share them.

Sharon daVanport: Right.

Tricia Kenney: Yeah.

Sharon daVanport: For those who don’t know, John, I think this is a fascinating part of your life history. Tell our listeners what band you used to work for. You actually had a few significant inventions when you were with this band.

John Elder Robison: I started out with local bands in the Northeast, and then I worked with regional bands. Then I was hired by Sound Company here in the United States and I built sound equipment that was used on many, many tours—people like The Kinks or Roxy Music, Phoebe Snow, Black Sabbath, Talking Heads and so forth. And then after doing that for a while, I was hired by Kiss to create the guitars Ace Frehley played in the years they were really big that blew smoke and exploded and shot fire and rockets lights and stuff like that. So I’d made those guitars, and that’s probably what I’m best known for today in the music world.

Tricia Kenney: Yeah, that’s pretty cool.

Sharon daVanport: I know. So all that smoke and all that stuff exploding—it looked like the guitars were just smoking and catching on fire and all that cool stuff, that was John Elder Robison’s doing, huh? [Laughter] That’s pretty cool.

John Elder Robison: There’s some pictures of me with those guitars back in the ’70s and ’80s on my website.

Sharon daVanport: John, I’d like for you to talk a little bit about your upcoming book. Is it slated for release next year, 2011, in the spring? Did I read correctly?

John Elder Robison: Yes. My next book’s called Be Different. The people who read Look Me in the Eye, so many of them came back to me and they said: “I really liked how you said that you taught yourself to do this, or you taught yourself to do that, or solved this or that problem. But could you tell us exactly how you did it?” I realized that in Look Me in the Eye, I went quickly over those sorts of things.

In Be Different, I have stories that go into greater depth, that explain how I learned to look people in the eye; how I learned to hold conversations. I talk about how I solved my problems with bullies and how I dealt with “underwear with teeth” and other sensory issues. I try and expand on the insights in Look Me in the Eye, and I think that Be Different will be a significant book for people who want to start down that road—teenagers and young adults. I think it’ll be a fairly powerful follow-up to Look Me in the Eye. I hope that it’s still entertaining; it’s got more of my strange life stories in it.

Sharon daVanport: Well, you are a good storyteller, John. That’s good; I think that Look Me in the Eye was an entertaining book, the way you were able to paint a picture for people, the way you tell your story. So that’s good to know that Be Different will be that way. I guess you’re saying it’s told in the same way, then?

John Elder Robison: Yeah, I would think so. It’s the same me. It’ll be on sale in time for Autism Awareness Month in 2011. I actually plan to do something different for the release of this book. For most traditional books, authors’ll go out and do book tours where they do book signings in bookstores and that’s kind of it. When I release Be Different, I want to work with the various advocacy groups—Asperger groups, autism groups and even general human service groups like United Way and Easter Seals—walk to fundraisers around the country for them, where I would partner with them and a local bookstore. The bookstore would donate a percentage of its sales to that charity for the day, and they would try and [create?] a larger event than simply a book reading. And that’s been very well-received by the people at all of the charities that I’ve talked to, and I think that that’ll be a good thing.

Sharon daVanport: Wow, John. Oh, absolutely. That is just really nice. That is so good to know, John. That’ll be good to get the word out.

Tricia Kenney: I wanted to ask: When you talk about the avoidance of looking somebody in the eye and how you’ve overcome that, can you explain a little bit about that? To me, it’s just a little creepy when somebody is staring you in the eye. [Laughter] To get past that without it feeling unnatural and looking forced or out of the norm. People don’t go around just staring each other in the eye. How do you make it look like a natural thing, like a comfortable thing? Is it comfortable for you?

John Elder Robison: [unknown] it is, but you have to be able to do it naturally and comfortably. You can’t make it look like a natural thing; it has to become a natural thing. First of all, I don’t just stare into people’s eyes because I agree with you: that that does look creepy. What I’ve learned is that when somebody says: “Look at me when I’m talking to you,” first of all, that signifies that there has been a breakdown in trust in the conversation. So it’s not so much a comment on your immediate gaze as it is a comment that the conversation that you’re having has gone in an undesirable direction. That, I think, is a significant realization.

The way that you can head that off is by remaining engaged or not sending a signal of disengagement. So for example, when I was talking to somebody when I was younger, I might look up into the school or I might look off at the floor. I now know that if I am talking to you about something difficult—like you’re asking me why I’ve shown up late for work three days in a row—and I am looking off into the distance, I now know that you might interpret that as me being dismissive of you and I don’t even care about work, and you’d get mad. And you would say: “Look at me when I talk to you!” That’s an example of how there was a breakdown in the conversation that made you say that. It wasn’t necessarily just the one thing.

Now, if I were in that same situation with you, I know that I could look at your chin. I could look at your forehead; I could look at some neutral part of you that would not distract me so that even if I was uncomfortable looking at your eyes, I could generally look in your direction so that when you looked at me when you were talking to me, you would realize that I was paying attention to you. I don’t have to be staring at your eyes to make you feel like I’m paying attention to you. I just have to be looking generally at you and not at the wall or something else. So that’s not an all-purpose answer, but that’s an example of how you can teach yourself to behave naturally in a way that’ll be successful for you and more successful for the other person, and it still accommodates your own discomfort, say, looking people in the eye.

Tricia Kenney: Right. It’s more of a social etiquette thing. Speakhing of trust in a conversation, I know police and teachers, parents, they tend to associate looking away when you’re talking to them to being dishonest: you’re not telling the truth about who broke that vase.

John Elder Robison: That’s right, and it’s interesting that studies have shown that failure to look people in the eye is not predictive of dishonesty in a meaningful way, and yet, it’s perceived that way by people.

Tricia Kenney: Um-hm. Yeah.

Sharon daVanport: Right. John, I wanted to ask a little bit about some of the more recent blogs that you’ve been doing. I actually had a few people write in and ask if I could pass on a couple questions during this show to you about the one in Psychology Today that you wrote. I believe it was Of Mice and Men about genetic research. Someone asked: “Are you saying that autism can be acquired or do you believe it is an actual neurology someone is born with?”

John Elder Robison: I guess I didn’t explain that clearly. I never meant to say that you could catch autism like you could catch a cold. What I meant to say is that scientists are beginning to unravel genetic differences that are present in people with autism. There are many of these differences—thousands of them—not just one or two. So what’s interesting is that they are finding some of these differences will run in families.

You might have a situation where there’s a 15 year old, a 10 year old and a 6 year old, and if you test those kids, all three of them have a certain genetic difference, but only the 10 year old actually is autistic. So you ask yourself: “Why would that be? That difference is present in all three children. Why aren’t they all autistic?” Increasingly, scientists are recognizing that genetic differences work together with the environment in which we develop, and sometimes they activate and do something, and other times they don’t. So my statement was that genetic difference combined with the environment in which you develop may result in you being or not being autistic. You have to have the predisposition and the environmental circumstance.

People listened to that explanation and they thought that by “environmental circumstance” I meant a specific thing. Like I meant that they were ingesting mercury or being exposed to loud noise. I didn’t mean something as simple as that. The environment is just unbelievably complex. It’s the behaviors that your mother engages in, and it’s the world around you: everything you eat, you hear, you see, you smell. We don’t know which of those combinations may activate certain genetic differences. But that’s very different from saying that you would catch autism like you would catch a disease, and these differences are very likely activated in the developing fetus, before he or she is even born.

Sharon daVanport: I see. With your recent role over at Autism Speaks, I’d like for you to talk a little bit about what it is that you do there. But first of all, I’d really like for you to speak to our listeners about why you felt it was important for you to accept Autism Speaks’s invitation to sit on their scientific review board?

John Elder Robison: The reason I thought that was important is that, like many people, I’ve been aware of Autism Speaks becoming a powerhouse in fundraising in the autism world. At this point, I believe Autism Speaks raises more money than all the other autism charities in the United States put together. Autism Speaks has come under criticism, first of all, for spending more money, for example, on scientific research instead of community outreach. Then they’ve been criticised for spending money on things that don’t benefit autistic people or things that critics don’t like.

I guess I felt like so much stuff that they seemed to be spending money on was stuff I didn’t really agree with, and I felt like I had two choices; I could either just become a critic on my blog and in my public talks and say: “Well, I don’t like what Autism Speaks is dong.” Or I could offer my services to them to provide my perspective as a person with autism about how that money might better be spent, and how they might better conduct their affairs so as not to alienate people like me. I’ve found some stuff in the past to have that effect.

I felt that I could make a constructive contribution, and I recognized that any organization that’s gone out and raised over 100 million dollars, they’ve got the power to do some really wonderful things in our community with that money. I felt like to try and destroy that would be absolutely counter-productive, so what could I best do? The best thing I could do is ensure that the money that’s raised in the future is spent in ways that benefit autistic people living today. That’s what I wanna do.

Sharon daVanport: What is one thing that you can let everyone know right now that you want to see Autism Speaks really focus on? Can you give something specific that you’ve already shared with them?

John Elder Robison: Sure. I’ve written about some of these things on the blog already. One of the things I said back in the winter was that I wanted to see Autism Speaks directing more research to discover and then find ways to address the needs of grown-up autistic people: people like you and me. People like us, are we more likely to get diabetes? Are we more likely to die of any particular thing? Are we likely to develop Alzheimer’s? Are we likely to develop other neurological problems? Nobody knows.

Look about more practical, everyday issues. We talk about therapy like ABA and RDI and things like that for children. There’s tremendous argument about what’s effective for children, but nobody ever talks about what works for adults. Think of all the people who are alienated and angry. There are adults with autism who can’t employment and they can’t find themselves a satisfying place in the world. I think that we have a duty to try and find things that will help those people, just as we’re trying to find ways to help children who are struggling with autistic disability.

Tricia Kenney: You grew up not even knowing you were autistic, right?

John Elder Robison: I absolutely knew I was different, but I didn’t know “autistic” would be the word for it.

Tricia Kenney: Now that you’ve seen what ABA is and what RDI is and all of those methods out there right now, do you think that it would’ve benefited you? Do you think it would’ve changed the course of your life and how you became the adult that you are significantly? Do you think it would’ve benefited you, getting those treatments?

John Elder Robison: Are you asking specifically if I think ABA would have benefited me?

Tricia Kenney: Right.

John Elder Robison: No, I don’t think ABA would’ve benefited me much, but that doesn’t mean that I believe ABA should be thrown out the window. I’ve spent a good bit of time meeting a lot of different kinds of people on the autism spectrum in the last three years, and I have formed the impression that people who have substantial verbal challenges as a result of autism, whether that means they have difficulty understanding the logical component of spoken language or they have difficulty expressing it or both, those people are a very different kettle of fish from a person like me who has unusually good logical language skills, but substantial impairment in social intelligence.

Because I don’t have that language impairment, ABA is not something that would be terribly beneficial to me. But I have seen fairly compelling evidence from schools who work in my area with children who have these major verbal impairments. I’ve seen how ABA is visibly effective in the time that I have been involved with them helping those kids communicate and become more able to integrate and talk with their peers and interact and stuff.

So I guess what I would say is, ABA is one of those things that works for some people on the autism spectrum. It doesn’t work for everyone, and I think ABA’s most vocal critics are actually the people who probably are not the potential beneficiaries of it anyway. When I look at the people who are critical of it, many of those people are people like me—people with good language skills but social intelligence challenges.

Tricia Kenney: You may have needed some therapy of some sort, and ABA obviously would’ve have been the road for you to go down. But you may have needed some sort of therapy—sensory integration…

John Elder Robison: There’s no question that if I could’ve gotten those kinds of therapies, I think that I would’ve been spared a lot of pain and suffering in my early years. I probably would’ve graduated from high school; I probably would’ve been able to go on to college, and I’d be very different today. Whether I’d be a better person, I don’t know, but I would be different.

Tricia Kenney: Right. That’s why when I see these autism insurance reforms going on, all they’re really covering is ABA, which obviously is not going to meet the needs for so many on the spectrum. If you wanna include ABA, that’s fine, but there should be other things that get put with it, so kids can become better at functioning and doing whatever they need to do to succeed in the world.

John Elder Robison: I absolutely agree with you about that. But I’m not really a political person, and I don’t have a lot of political insight or knowledge. I guess I feel like my contribution is to try and help steer the science in a productive direction and I’m gonna have to leave it to other people to work the political angle and get the support for all of the full range of therapies and interventions that we can benefit from.

There’s such a wide range of therapies that autistic people can need. Some people need speech therapy; some people need social skills therapy; some people need both. There’s just all kinds of interventions that people can benefit from. One thing that concerns me is that a lot of times, the people who are critical of one intervention or another, they look at something and they say: “Well, I don’t have that problem” or “It’s not relevant to me, and therefore it’s worthless,” when in fact it could be life-changing for another autistic person who does have exactly that problem.

Tricia Kenney: We don’t want blanket science for every person, because every person is their own individual and they have their own specific needs and problems and challenges and whatnot. Yeah, we should not be doing blanket treatments for people.

John Elder Robison: That makes this a really hard problem to solve, because there is no single therapy that we could even give to half the people. There’s just too much diversity in the needs of our community.

Sharon daVanport: Would you like to see Autism Speaks do more in the way of augmentative communication, providing devices for people so that they can have a voice? Those are some supports that we don’t see as prevalent, that’s really readily available for a lot of people. It would make a world of difference for a lot of autistics.

John Elder Robison: I actually am working now on defining the rules for what’s going to be a technology initiative next year, and we’re gonna be able to announce it pretty soon.

Sharon daVanport: Is that at Autism Speaks?

John Elder Robison: Yes. And that is exactly one of the things that I’m thinking about. So I can’t tell you about it yet—not because it’s a secret, but because it is not fully formulated yet. However, it’s gonna get announced as soon as it’s formulated, and that’s gonna be pretty soon.

Sharon daVanport: That would be awesome, John. I would like to see something like that. Those are the kinds of supports I know that our community, especially adults, and even children….but I’m saying it’s really needed.

John Elder Robison: When we were at IMFAR, the autism science conference in Philadelphia, a few weeks ago, I met a number of people talking about that very thing. They have asked me to make a write-up that defines communication challenges that we want to address with technology, and I am working on that now. So that’s the first step in this process. That’s a good example of the way that we would use Autism Speaks’s resources to develop technologies that would have a powerful impact on a certain group of autistic people living today.

Another example is the 25 year study that I wrote about on my blog last month. Did you see that?

Sharon daVanport: Can you remind me? I don’t know; I’ve read a couple of your blogs, but…

John Elder Robison: The 25 year study is one where a professor at the University of Utah when he was starting out as a psychiatrist back in the 1980s, he did a study that looked at almost 500 autistic people, most of whom were diagnosed under the old DSM-III criteria. A lot of them were people with more severe impairments than you or I, and also a group of what would be Asperger people that would fall under the DSM-IV criteria.

He did fairly extensive workups and interviews with those people back in the ’80s. Autism Speaks just gave him a half million dollar grant to go out over the next three years and find those people, and find out how life has treated them. Are they integrated into their communities? Are they more disabled? Are they less disabled? Are they not disabled at all? Do they have wives, children, families? Are they in jail?

I can show you tell you that the big grant that Autism Speaks just gave was based upon a follow-up study that was done by a doctoral student who you can meet on my blog if you go back there to it. She went out and she found 40-some people from that original study and reported on them. The results of her pilot work for her doctorate were, frankly, very encouraging.

That’s an example of how we’re going to go out and look at new issues that affect people like us. If we could go out and say from these 500 people that: “Here are some things that the successful people did that may well work for other people today. Here are things that led to failures,” that would be a real ground-breaking piece of work. That’s another example of what we’re doing tody to benefit the community, you and me, right now. My adult study is on my Blogspot blog, but was also on Psychology Today. I think it’s on the Autism Speaks blog, too. That one was reasonably widely distributed.

Tricia Kenney: With your work with Autism Speaks, are you getting to talk with a lot of the people there, to give them a better insight of the autistic mind maybe helping people learn to change their language a little bit?

John Elder Robison: Yes. I actually talked to almost all the people there. One thing that I see is that there’s a more human face to them than I recognized before getting involved with them. I now understand that some of the things that they said in the past that I had found offensive and that others had found offensive, they were coming from a victim mindset as parents. That’s not a place I’ve really ever been, ’cause I’m kind of in it and not [unknown] it.

But I guess I see the people as more human and I recognize that they ultimately want the same thing I do. It’s very frustrating to me when people become hung up on semantic things like this talk of a cure. I say to people that I wanna see Autism Speaks fund research that will remediate components of disability in autistic people. That means that if you’re a person who has terrible gastrointestinal trouble that’s related to autism, we could fund studies to help solve that problem for you. If you’re a person who can’t talk, we should develop tools to help you communicate. If you’re a person who can’t get a girlfriend or get a job because of your social challenges, we should develop therapies that will help make you successful. You don’t have to avail yourself of those things, but I think that’s the challenge here. That, to me, is what the mission of Autism Speaks is. I don’t think that there’s any dispute about that. People get hung up on cures and “they’re abolishing autistic people,” and I don’t think that’s where people’s heads are at.

Sharon daVanport: Right. I wanted to get over to the switchboard before we run out of time here. Is that okay if we go to the switchboard now, John?

John Elder Robison: Sure.

Professor Mormor: Yes. How are you?

Sharon daVanport: Hi, thank you. Welcome to AWN radio.

Professor Mormor: I’m Professor Mormor; you actually invited me as a friend. I also have the educational remediation programs on Blogtalk Radio. I was very interested in this topic, because I have done tremendous research in the area of autism as well. In fact, I did work with an autism student a couple of years ago, who couldn’t perform any mathematical processes at all. But in a year, he was able to perform work that was at a fifth-grade level. Also, he couldn’t read, and I was able to get him to read up to a second-grade level in about a year.

I have a tremendous amount of work invested in it. I have a book right now that talks about it. It’s called The Blinking Eye. There are many people who are subscribing to this book, who are actually getting a lot of benefit from it. John has that thing about looking in the eye. It is [unknown[ exercises that help people with any problems at all to actually be able to go into the neurological system of the brain to be able to develop confidence from within and then deal with that kind of situation.

Also, John is talking about activities to teach autistic people old or young how to be able to lead independent lives. I have developed a game in that area, as well. In fact, two years ago I actually wrote a program—a very local kind of program, not really something on a massive scale. But I used an autism student and it was able to really help him tremendously.

The process I work with I call reflective communication for a person who really has these problems. What I’m saying to John is that if he needs any help in this area, in terms of developing curriculum or anything of that nature, he can contact me and I can give him further details regarding what I do.

Tricia Kenney: Wow. Wonderful.

Sharon daVanport: And are you out of California, you said?

Professor Mormor: Yes. I’m in Long Beach, California.

John Elder Robison: Well, you certainly can write me and pass that along, yes.

Professor Mormor: Okay. Yeah, I can do that.

Tricia Kenney: You’re catering to how we’re processing things as autistic people and using that to teach methods, where people in the past maybe just said: “This person is unteachable. We’re just not gonna teach him to read; we’re not gonna teach him to write. He’s gonna be nonverbal.” Correct?

Professor Mormor: It’s all of this. All of it. I have developed different games that actually teach the autistic person how to coordinate their left and right brain to [think through?] activities. I also have different systems. In fact, one of my systems is called the Wonder Wheel. That’s what I [used to] work with this autistic 15 year old a couple of years ago. In fact, it was the aunt that gave it the name “Wonder Wheel.” I actually was calling this game “the Brain Power Game.”

I had a stroke in 1994. I was in the hospital for four days, and I refused treatment. I used the game to actually heal myself in four days. I couldn’t talk; my right hand was paralyzed. In four days, I was able to heal myself completely. So when this lady invited me to work with her nephew, she started to actually see improvements. She said: “Well, why don’t you call this game the Wonder Wheel, because it’s done wonders for you, it’s done wonders for my nephew.” So that’s what we began to call the game.

Sharon daVanport: Very interesting. Well thank you for calling in.

Professor Mormor: Okay. Bye.

[The professor hangs up].

Caller: Good evening. I’m an adult autistic, and I have a six-year-old who’s also autistic. He has been a challenge for us because when we first had him diagnosed, doctors were not very thrilled with his diagnosis. They thought he would not amount to much and he wouldn’t have much going on for him. But up until four, he was having a lot of trouble. Nowadays he’s doing a lot better because I decided that I would take his therapy into my own hands, and approach his therapy like I approach my own.

I’m 46 and when I grew up, we were just retarded. We didn’t get any support; no one told us anything; no one told us how to manage; no one told us anything about our problems, so I resolved those problems the best way I knew how—by doing it on the fly. I made a bunch of regimens and protocols for myself, and now I’m teaching them to my son. But the question I have is: Beyond the basic behavioral therapy that gets given to most people, are there programs, are their organizations that are trying to address this issue at the behavioral, neurological level? Are we just supposed to assume that some people can’t be helped, they won’t be helped, and there’s no help for them, so we shouldn’t even try? Or are we seeing other programs that are not drug-related that approach the problem more holistically, more naturally?

I believe that what I’ve done for my son and for myself was to train myself to think in a certain way. Because I never had anyone to talk to about these things, I basically just did them. When they worked, they were great, and if they didn’t, well, then I’d do something else. Through trial and error, I came up with a regimen of things I know now work for me and I now teach them to him and they work for him.

Sharon daVanport: Well, John, you and I’ve talked about that. I’m 45; I’ll be 46 this year. That’s how we got through life. [Laughter]

John Elder Robison: I did the same thing. I would say that teaching people behavioral strategies that work is a very powerful thing. One of the studies that I recently looked at that relates to ABA therapy for children with severe challenges showed that after a few years of ABA, a group of kids at an average IQ of 70 at the [beginning] of the study, which is within the mentally retarded range, [their average IQ] had risen to 85 at the end of a couple years of this therapy, which is a substantial percentile improvement.

Caller: It is.

John Elder Robison: Yeah, absolutely. It doesn’t sound like a lot, but that’s a really big deal.

Caller: Oh, no. That’s significant. That’s a significant improvement.

John Elder Robison: What that shows is that cognitive exercise can make you smarter. There’s a lot of evidence to point to that. In people with autism, one of the problems is not so much the raw processing power in the brain as it is the brain’s ability to organize and use its abilities effectively. That’s absolutely something that we may be able to change through behavioral therapy, but it is also something that we are looking at with scientific studies that change through neuroscience. We’re looking at altering the brain’s configurability, both through therapies like TMS, which I’ve written about on my blog, and possibly through medication. Those things are still science. They’re not things you can go out and try now, but there is tremendous promise for the future that we may be able to actually remediate a lot of the underlying cause of some more severe autistic disability.

Caller: But currently there are no structures that exist anywhere that people could go and see and say: “I’d like to try some of System A and some of System B?”

Tricia Kenney: There are.

John Elder Robison: There are. If you look at clinical trials for autism, there are trials going on right now around the United States that are using TMS to remediate some autistic disability, and there are trials using drugs to remediate certain things. Whether your son would qualify for any of those trials and whether they’re close enough to you to try them, I don’t know. But that kind of research is ongoing around the United States.

Tricia Kenney: I also wanted to let you know, there’s a company called Naturally Autistic, and you can just go to their website. They have wonderful method that they use. They bring people together—autistic families, autistic adults—and they really have been doing wonderful things for the autistic society over the past 15 years. I think that’s sounding a lot more like what you’re looking for, as far as ways to help your kid process things in a way that’s best for him.

I would highly suggest checking it out. I know it was a huge life-changing event for my family when we got involved with them. I got to understand my children better, how they processed things, and use methods that were specifically for them, to help them learn math and reading and things of that nature. I think that might be worth checking out for you, and I know John is aware of that company as well.

John Elder Robison: I actually didn’t even think of that, but there are right now some alternative medicine ideas out there, some of which are indeed quite effective at altering cognitive abilities. Different things work for different people, but absolutely there could be promise for you in that.

Sharon daVanport: For the caller, what you’re describing is that you’re actually parenting your child by instinct and by nature. You get your son, so you understand him in a way that is very unique. You can really focus in on that, and do wonders. I know that I have a connection with my son who’s on the spectrum in a way that people will actually comment. They’re like: “You just get him.” I do, in a very innate, instinctual way. We speak the same language, so to speak. We do; we get each other. You can’t ever underestimate that in itself right there.

Tricia Kenney: Right.

Caller: I’ve put a lot of time into him, and I think that the year and a half now that I’ve been working with him pretty steadily has made a big difference for him. His academic abilities are continuing to improve, and that helps a lot. It’s really hard if you”re not even able to read and write if you want to have any shot at taking care of yourself.

My mother, she raised me, and my family basically blackballed her after I was born, because I didn’t speak till I was almost 5. This made me “the retarded kid” in the family, so they basically just ignored her and left us to work it out on our own. But I eventually got it together, and with the help of a couple of really good teachers through the years—every three or four years, I might meet one teacher who was really willing to make that extra effort, and I can still remember their names because they transformed my existence from the quiet living hell it was most of the time to someplace where I could get part of learning to read, and learning to do math.

As an adult, I’m highly functional, at least as far as my work is concerned. Not so great at the work social thing. I don’t do work politics; I don’t do work religion, and I just finished reading the article on that Theory of Mind thing, and that makes me go: “Hmm. Religion. Well, that explains why I never had any interest in it.”

Sharon daVanport: Thank you so much for calling in.

Tricia Kenney: Take care, and good luck with everything.

Caller: You guys keep up the good work.

Sharon daVanport: Thank you. Bye.

[Caller hangs up].

Well, John, we’ve only got two and a half minutes left, so we probably should be wrapping it up by telling everybody how they can contact you. For speaking engagement, you go to the Lavin Agency?.

John Elder Robison: Yeah. You go to the Lavin Agency in Cambridge. People can find me on Facebook. They can find me on Blogger If they just type “John Elder Robison” on Google, a lot of stuff pops up—there’s videos of me and links of blogs and stuff like that. So I’m pretty easy to find. I try and respond to everyone, and I do have a lot going on, but I try and respond to people who wish to engage me, anyway.

Sharon daVanport: We sure appreciate you taking the time out of your busy schedule to come on and talk to our listeners and answer a couple of questions that they had. We really appreciate that, John, and you have a safe trip back home. I know you’re traveling right now. [Laughter]

Tricia Kenney: That’s some interesting stuff that you’re working on right now, so I’m looking forward to seeing more of that.

John Elder Robison: Well, I hope I have given you some understanding of why I believed I could make a difference, and shown you some stuff that I think is gonna make a difference to folks like us. That’s what I’m gonna work towards.

Tricia Kenney: Well, we’re very hopeful for it.

Sharon daVanport: I appreciate your positive attitude, John, and I’ve always supported your willingness and your effort to go out there and be the person to do this. There’s a lot of us that would’ve been able to maybe have that right fit, that couldn’t have done it. I can definitely see how you can really benefit Autism Speaks in many ways, and I really hope the organization can really tap into your suggestions and what you have to offer. I hope it really comes to a place where we can really see some good results from all this.

John Elder Robison: Well, I feel like so far, it’s working. I guess certainly, time will tell for other people, but I feel like it’s working.

Sharon daVanport: Very good. All right, well thank you so much, John.

Tricia Kenney: That’s good news for all of us. Maybe next time we’ll have a hot seat for you.

Sharon daVanport: [Laughter]

John Elder Robison: Right. I’ll talk to you another day.

Sharon daVanport: Okay. We’ll talk to you later, John.

Tricia Kenney: Thanks, John. Bye-bye.

John Elder Robison: Bye-bye.

[John Elder Robison hangs up]

Sharon daVanport: I guess that does it for us this evening, Tricia. I think we’ve got 20 seconds left. Before we go off air, again, I wanna remind everybody to e-mail us your stories if you wanna be a part of the contest for the GPS locator and one year of service. That’s a $500 value. That’s info AT autismwomensnetwork DOT org. I wanna thank everyone in the chat room, and listeners and our callers. We will see you next Thursday.

Tricia Kenney: All right, sounds good. Thanks, Sharon.

Sharon daVanport: All right, thank you, Trish. Good night.

Tricia Kenney: Bye-bye.

[End]

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2 Responses

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  1. outoutout said, on June 22, 2010 at 11:43 pm

    What a great interview! Thanks again for transcribing it. 🙂

  2. Adelaide Dupont said, on July 3, 2010 at 1:25 am

    Like the way Robeson talks about honesty, trust and the bands he’s been in.

    And the way he will promote his second book.


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