Autism & Asperger's Center

We're joined today by John Elder Robison author of "Be Different: Adventures of a Free-Range Aspergian" and previously, "Look Me in the Eye." John is an accomplished Aspergian having worked in the rock music industry, creating some wonderful guitar, pyro-technic, and other musical effects as well as building his own very successful car repair company based up in Massachusetts. John, we are pleased to talk with you today. Talk a little bit about who you wrote the book for? What was the audience you were looking to reach?

When I wrote "Look Me in the Eye" it was a story of my life that illustrated how Asperger's had maybe shaped me, how I was influenced by this autism thing… but mostly it was just a story of me and the things I did. After I wrote that book, so many people came up to me and they would say things like, "I wish you could tell us how you did this or you did that in your book. You just say in one paragraph, "I taught myself to do this and there it was." And I'm trying to do that, but I can't do it myself. And then people would say things to me like, "my son can't tolerate flashing lights and I don't understand how you could work with rock and roll bands with all those lights." And I didn't know the answers right off but I thought real hard about all those questions and I decided that I should write a new book that showed through stories all of the ways in which autism has affected me, and showed how all of the facets of autism, as described in the DSM manual, manifest themselves in me, and what I did about it, and in some cases I built upon strengths and other cases I minimized a disability. Some things were good for me, some things were bad, and some were like a mix. And I think that's probably how it is for everyone, so I wrote the book for people who want more insight than "Look Me in the Eye" gave them.

People talk about how I was always a smart kid and I'm supposed to be a smart grownup and as smart as I'm supposed to be, look at how long it took me to figure that out. So if I can share that knowledge with young people today, I feel that they can have a tremendous advantage in life if they can hear that a person who's different, like they are, could benefit from that, then they think, "maybe I should try it," and maybe they'd get ahead faster.

I'm pleased to be joined here today by John Elder Robison, author of "Be Different" and "Look Me in the Eye." As you think back on the different stages you went through in your life and some of the different nypical rituals that you've learned and adapted your own thinking about things, what was the hardest kind of behavioral ritual to learn?

The hardest thing for me to learn in general was the need to be considerate of other people and that a tricky thing to understand for a nypical person, because one of the traits of autism is that we have a really hard time seeing the other person's point of view and we are often perceived as aloof or arrogant or indifferent and the truth is we're not generally being any of those things, what we are is we're oblivious to other people. So I would have problems where I would like walk into a room and change a TV channel, when I wrote about that in one of my stories in "Be Different" and it's not that I'm trying to be rude it's that I didn't notice the other people, even though they were plain to see and they were right in front of me. Somehow I just didn't perceive it. And I have had to really work to teach myself to be mindful of other people and how things I do might affect them. And I believe, although I have never been one so I can't know, that nypical people sense these things instinctively and when that behavior is lacking in me, it's a serious impediment to social success with folks. So that's been really the hardest thing to learn and it's just affected so much of my life. The better I've gotten at that; the better I'm accepted.

Well, my grandparents were the ones that taught me manners and when they were raising me, they would tell me to mind my manners. A lot of those things didn't make any sense to me and it was very hard for me to comply with their requests when it seemed like total nonsense. But, as I learned more about the function of manners, I learned that even though they don't make any sense, if I adopt some resemblance of what nypical people call good manners I get along better in the world, because it's what people expect and it's what makes them accept me. And by following some of these manners, I find myself welcomed into society and it's transformed the way I've been accepted in the world, and that's one of the messages in "Be Different." That somebody who's young as I once was, may welcome you the same as me, and they may look at some of those requests… that they behave in a certain way even though they think it is crazy and doesn't make any sense. Why should I do that? And I'm here to tell you as a grown up that if you do that, you'll have more friends and you're going to get jobs and you're going to have opportunities that will be denied you if society judges you to be a rude boor.

Did that realization come to you over time or were there specific events that sort of came to you?

Well it was sort of a trial and error process. I had a period where I was just probably rude as hell. Like, my grandfather would tell me… and of course people still say that about me now… but it's really all a matter of degree… I'm a whole lot better than when they said it about me when I was sixteen. And so sometimes I would be rude or ill mannered and I might see a consequence to it and sometimes I didn't' see a consequence to it and gradually as I got older and I became somewhat more wise from age, I was able to look back and see how I could have achieved things faster had I fit in with other people. I mean the real key to manners is that manners are this superficial but important set of behaviors that cause other people to welcome you into their circle. And I now realize that being welcomed into other people's circles is essential for my own success. I didn't really grasp that as a teenager.

I'm pleased to be joined here today by John Elder Robison author of "Be Different" and "Look Me in the Eye." How does a young Aspergian or somebody who's on the spectrum who's fifteen or sixteen and not sure about what their strengths are, find their strengths?

The way I found my strengths was again just really a strike of luck. My parents taught in a big state university – University of Massachusetts – and I had the run of the campus from when I was a small child. So I was able to study dinosaurs and the history of Greece and read literature in the library and study electronics and computers –whatever I wanted was there at U Mass. I think that if you accept the premise that every child has some unique strength and nobody knows how big of a gift they might have, every kid's got to have areas where they are better then others. And our job as grownups in these kids lives is to expose our kids to the maximum number of opportunities to learn new things in the hope that they're going to latch on to one thing or another and that could lead them to a good life. And that kind of stuff may not be obvious, a kid can be 12 years old and he can get interested in cockroaches and all he wants to study is roaches and people laugh at him in school, but a kid like that can grow up to be a scientist at a company like Ortho and he'll be a star and it's a great thing. So really the interest in something like cockroaches is a disabling trait in a little kid, but it's a great gift if that's your interest once you become a grownup.

I'm pleased to be joined here today by John Elder Robison, author of "Be Different" and "Look Me in the Eye." In "Be Different" you relate some of your experiences in school, particularly around bullying and it's an unfortunate situation that some kids bully other kids. We're here at Ivymount School today, you also mention the Monarch school in "Be Different." What should schools do to help kids who are being bullied and what should kids do to help themselves who are being bullied?

One real concern that I have is that kids today are often isolated from other children, and their parents bring them to school and their parents whisk them home and they don't have group play at recess in a lot of schools. One of the things that I learned very early on is how to not make enemies. In my first book, "Look Me in the Eye," I talk about how lonely I was because I didn't have any friends. When I wrote that passage, I didn't understand that I didn't have friends and that I didn't have the friend making skill. What I did have was the 'how-to-not-make-enemies skill'. Because what you don't read about in any of my books is how I got beat up day after day, because that didn't happen. And I think the reason that didn't happen is I developed the skills early on to not antagonize other children. I might have been a weirdo and I might have been a freak, but I was able to be my own freak, and I didn't attract unfavorable attention. So I think that's a really important thing that kids have to learn to co-exist peacefully and I think the challenge that we see in some of these schools, like here at Ivymount, is that some of the kids just really can't learn that and that's a really hard problem that concerns me and I wish I had an answer for it.

I'm pleased to be joined here today by John Elder Robison, author of "Be Different" and "Look Me in the Eye." You're the parent of an Aspergian as well as being an Aspergian. How did that change your perspective on Asperger's and what you needed to do as a parent?

Well, when I saw my kid have the same sort of social failures that I had when I was little, I would pick him up and I would tell him what he could do different. I would say, well, if you did this instead of that he would share the truck with you instead of hit you with it. And at first I was shocked by the belligerence and the stubbornness of that kid of mine. And he was really difficult to train. You didn't just pick him up and say something and he would say "yes wondrous dada" and sit back down and do it, he would like hit me with the truck. And eventually I would have to like pick him up and dangle him by one foot at a safe distance and tell him stuff. And it took me thousands and thousands of repetitions but it eventually took. And by the time he was sixteen, Cubby had so many more friends than I ever had. Cubby as a tenth grader would have five and six friends come over and they'd watch movies and eat popcorn and stuff on Saturday nights. And I couldn't even have dreamed of that! And I think a significant part of that was how I would sort of show him stuff and of course he's a kid so he wouldn't give me any sort of credit at all for that, but I think I can take pride in having done that even though he probably wouldn't say so.

Are there things that kids just have to learn for themselves in their experiences in growing up? And how did you draw some of those lines in terms of things where you said "ok he's just got to learn this himself?"

Well, I think you've got to learn how to not be a complete fool of yourself and you've got to learn those things by experiencing some consequence from doing the wrong thing. And the thing about Cubby and the thing with many of us with Asperger's is he would do the wrong thing and he would just be stuck. He wouldn't have a path to go from doing the wrong thing to having any inkling of what the right thing might be to do. And that was where picking him up and dangling him and telling him the right thing could have an effect because you might pick him up and tell him what the right thing to do is and for the first hundred times he might just argue with you then on the hundred and first time try it and then if it worked it would become self- reinforcing. And that's kind of how it was.

Let's talk for a few minutes about relationships, which are often a difficult subject. You have some wonderful lines in the book and in one line from the book you said… "I may seem robotic and mechanical sometimes but there is nothing mechanical or cold about my internal feelings. I'm just as sensitive as anyone. I cried fifty years ago and I still do today." It's a wonderful line. Do you feel frustrated sometimes that people can't see what you are feeling inside in the same way that they do with other people who emote in a more nypical kind of way?

It makes me sad and it makes me realize that no matter how far I come and no matter how well accepted I am in nypical society, in some ways I am always going to be that kid sort of looking through the window at the party on the inside. I'm never really going to make it all the way in and that does make me kind of sad sometimes but most of the time I don't really think about that and I try and just look at what I've been successful at. I write about, for example, how people like me may be weak in our ability to go out and actively choose other people as it were, but we can learn to act in ways just to make ourselves choose able and the people that tend to choose us are more likely to be true friends for us and I've written stories about them and the power of that and I believe that to be true and I guess that's the best path to getting on the inside that I know.

How do you feel you made yourself more choose able? What were some of the things that you did?

I taught myself these rules of behavior, as irrational as some of them are, and I taught myself not to talk too much at people and to not be rude to them in certain ways, and I taught myself to dress the way the other people are dressing at things. Like see here today, see I knew that you were going to come here with a button-up shirt and I have a button-up shirt instead of having a t-shirt on, so that's an example of how I have taught myself to fit in. Because ten years ago I probably would have come here with some other kind of shirt on and I wouldn't have fit in. And so those are all little things and no one thing makes the difference, but collectively they mean a lot.

Let's talk a little bit about "Be Different" and the process of writing the book. What was different in the way you wrote the book compared to how you wrote "Look Me in the Eye"?

Well "Be Different" has more what you might call "intimate stories" in it, because people asked me for more insight. And that required delving more deeply into how I might have thought or what I thought and what I felt and it was frankly stuff I just wouldn't have said in "Look Me in the Eye." I never represented "Look Me in the Eye" as a comprehensive guide to autism for example. So people would come up to me and would say, "Well, my son can't really wear clothes because it scratches on him, he just can't do it, and I don't understand why you didn't talk about it." Well it's like when you go on a first date with a girl, you don't tell her what troubles you have with your underwear. You tell her about the cool job you had with a rock-and-roll band, and that's how it was in my book. So having heard those requests about wearing clothes and all that, I felt if they asked for that then I'll write those stories, and I have a story in "Be Different" called "Underwear with Teeth." I think that the meaning of that is probably self evident from the title. So I guess I felt that that's what people wanted and that's a fundamental difference between the two.

One thing I noticed between "Look Me in the Eye" and "Be Different" is "Be Different" has an incredibly uplifting, positive message about how people can find their strengths and have great successes in life. I found "Look Me in the Eye" was a little bit starker particularly when you were talking about growing up and some of the challenges in growing up that you've talked about here. Did you feel differently looking back on your life writing "Be Different" then in fact it turned out when you were writing "Look Me in the Eye"?

No, I felt like "Look Me in the Eye" came to a good ending. I just felt some of the parts in my early life totally sucked and I guess you got that same sense from reading them. And when I wrote "Be Different" one of the things I had in mind is that life probably sucks for a lot of young people today, just as it did for me. And I wanted to show them through all of these different stories, ways in which my life got better either because of or in spite of the different autistic traits that I described in each of the chapters. So it may be that in "Look Me in the Eye" it's a sad beginning and a happy ending and maybe in "Be Different" with every story where I talk about something, maybe there's a happy ending to each of those stories. Maybe that's the difference you perceive, but I'm not actually sure.

Last question, with the growth in diagnosis and the growth in population of folks and younger folks on the spectrum, obviously in the next few years, there are a lot of Aspergians and people on the spectrum who are entering the work force or taking on jobs – what should employers do to prepare? How can they invite Aspergians and make work places accommodative to people who have wonderful skills but also interact differently?

I think that employers first of all can train their staffs so that behavior, which might in the worst extreme be considered say harassment by an employee, is understood not as harassment but ignorant or foolish behavior on the part of someone on the spectrum who doesn't necessarily know any better. I think that a lot of employment issues arise when people on the spectrum don't know how to act but then the response from the nypical population is inappropriate in the sense that the malicious motives that the nypicals describe to the person who does the inappropriate thing are just not real. And so I think understanding can be tremendously beneficial for companies because it can reduce that kind of strife. I think that there are accommodations that employers can offer people, like folks with sensitivity to noise can be given quieter work places, and they can be given work places with high frequency florescent lighting that doesn't flash and cause trouble. That's a big thing! I think that people on the spectrum often want to work at strange hours or work alone and we are now evolving to the sort of work place where if your job is to write software code, for example, companies can accept that someone might want to start writing code at 6:00 PM and stop at 3:00 AM and it's not necessary for them to be in the workplace to do that. So there are many things that companies can do to accommodate people who are different. They can also award and recognize achievements from people who are different and I think you are going to see, probably in the world of technology, companies rise to the fore front where they are going to see them and set the standard for everyone else and I think the industry in general will be dragged along and I think that will be a major advance for what you might call disability acceptance in the United States, the acceptance of the geek and proto-Aspergian, Aspergian and autistic populations in the work force.

Another area of interest that I have with employers is how we might find employment for people with more severe autistic disability. There are some folks in Europe who are experimenting with having people with more severe autism, who have not been able to find good employment up until now, doing software testing. It's interesting because skills among institutionalized people with severe autism were found in a study to be one in twenty, which is shocking to me and it shows you how these skills may be hidden in people and you never even knew it. So the idea that we'd be able to take people with skills like that and have them work, say breaking software today, that's a potentially very important task and I'm hoping that we will see career opportunities like that open up. I also hope that if we do more to accept and welcome proto-Aspergian geeks and people at the lower functioning or less impaired end of the autism spectrum end of the work force, when those people are welcomed into the work force, it's going to change the general publics' understanding and recognition of autism and really disability and how we might define it. I believe that that's going to lead to career opportunities for people with greater challenges who can't find work now. I also am highly hopeful that some of this work that scientists are doing now is going to lead to the development of tools to help those people become more functional and better able to find work. So I guess I feel that the prognosis for the future for those of us with autism on all levels is very much more hopeful than it was five years ago.

John, as a parent talk a little bit about the importance of early intervention and recognizing the signs in your child as well as what you should do at that point, if you have worries?

One of the things that I have been privileged to see through my work on the science review boards for the federal government and for Autism Speaks is the overwhelming body of evidence in support of the power of early intervention. Time and again, I see studies that show how children who are not verbal when they're four and five years of age grow up to have substantially normal speech when they are in their twenties, but only if we intervene aggressively and early. What that speaks to is the tremendous importance of the early detection of autistic differences in children though screening tools, like for example M Chat and through tools that are being developed now. And that's got to be followed up with different kinds of therapies, mostly we're talking about behavior therapies here, speech and language pathology; speech therapies. There's this window of opportunity when children are little and it's the same window of opportunity that allows some kids to learn five languages when they grow up around the world but when they're in their thirties they could never do that. So we have this chance to take kids who have substantial challenges and work them out of that, but we've got to work hard at it. We're talking twenty, thirty, forty, fifty hours a week of intensive intervention. And that is a tremendous challenge that our school systems face today getting the budgeting and the man power to deliver those services but it's just so vitally important because when you look at studies that have followed children now over ten, fifteen years, you can see that providing those studies at an early age is one of the primary factors in helping those children emerge from disability. Clearly when you look at the need for services in our schools to provide these kinds of things, you can see that there are a lot of career opportunities for college students right now who want to go into speech and language pathology, special education, and occupational therapy. There's a tremendous and growing need for all of that and it's obviously not going away with all of the kids moving into school now with different diagnosis. So I think that is very important. Another thing that I think is important to remember is that not all of this therapy needs to be administered by a professional, like I talk about how I taught my son to behave differently so he could be more successful, and I did that on the basis of my own social failures as a child with Asperger's forty years before. If you're a parent who didn't grow up with Asperger's, you might not have those memories, but you certainly can yourself get training in how to help your kid. And parents are in the best position to render these kinds of therapies continuously and I just can't over state the importance of that for the children. It's a really, really big deal.

When you were first diagnosed and introduced to the notion of Asperger's, the doctor or friend who spoke with you talked about your diagnosis, and you mentioned in your book that you had some thoughts comparing it to a sickness, cancer, and those kinds of things. Being that Asperger's is about how your brain works, do we need a different kind of language that we talk to people about when we get diagnosed, that isn't about sickness or those kinds of things?

Well, when you tell somebody that they have something, whether it's autism, it's depression, or it's pneumonia… mostly when a medical professional tells you that you have something, you either have to cure yourself of that something or you are going to die of that something. So Asperger's and autism are one of those relatively rare things that you'll hear from your medical professional where it isn't really cured and it isn't going to kill you. But at the same time that doesn't mean that aspects of it can be disabling… more so for some people than others. So I think some of us, like me, need compassion and understanding, but there are other people that are touched by different forms of autism and those people need some serious help remediating their disabilities. So I think there is a very broad mix in the autism spectrum.

One of the very profound lines in "Be Different" that you have talking about conversations and interacting in social settings, is that most of the conversation isn't auditory and I think that's something that a nypical person would find surprising. What did you mean by that?

What I mean by that is conversations consist of you know, people are closer or farther, they lean in or they make gestures or they have facial expressions… so there is this exchange of messages between people and like a typed transcript of the words doesn't convey a lot of the sense of the conversation. So, I never really knew that. I didn't know there was this non-verbal undercurrent to one-on-one human exchanges between humans. That's a disability component of autism. And not knowing that, I made so many blunders as a young person and it's like being color blind, you know? If you can't see it, how can you possibly imagine it's there? And all my life I grew up an ignorant serf of autism and how it affected me, and I was never able to surmount that problem but when I learned about my own Asperger's and how autism makes us different. That's when I made these tremendous strides that I share in the stories.

Tell me about relationships with girls and women. You've talked about making yourself more choose able and so on, talk a little bit about some of the ups and downs particularly the ups and some of your relationships with women and how you were able to have more intimate kinds of relationships.

Well, I don't know that I can answer that in just thirty seconds but I will say that I have stories about a girlfriend acquisition and then ultimately a wife acquisition and sort of relationship management in both "Look Me in the Eye" and "Be Different." Of course some people say, "Well, what do you know? you just ended up getting divorced," and that's true. But I at least got there first and I have knowledge from the experience and so I think again it's being choose able it's learning how to act in ways that will attract other people. Because I think if we do that, a lot of us that are different, whether it's autism or whatever it is that makes us different, I think that's potentially charming and interesting to girls and I don't fully fathom why that is but I've observed it to be true. And so if we can take that as a strong positive and we can get rid of the negatives like never changing our socks and stuff like that, then we can have a winning combination.