Tuning in to autism

  

Lynne Malcolm: Hello, you're with All in the Mind on RN, I'm Lynne Malcolm. Today a candid and moving conversation with autism activist John Elder Robison about his life as the weird guy who's into machinery.

John Elder Robison: I could stand back there with my sound equipment and I could feel proud that I made those amplifiers sing from the audience, but I couldn't feel the emotions that the musicians were trying to impart. That night I felt it, and it was just so overwhelming, it was just like magic. And I got home and I wrote them an email and I said, boy, that's some powerful mojo you've got in that machine.

Lynne Malcolm: We'll hear later how John Elder Robison's emotions were unlocked by brain stimulation therapy, which he writes about in his recent book called Switched On.

John is a world recognised authority on living with autism and particularly the different way in which people on the autism spectrum read emotions and interact socially.

We begin our conversation with some of his childhood memories.

John Elder Robison: I was the unwanted child, I was the one they didn't want to play with and the one they didn't want to be friends with. And that was something that was very, very painful, being isolated.

Lynne Malcolm: What were some of the ways in which you felt that you didn't fit in and how perhaps you missed the mark socially?

John Elder Robison: One thing that's really difficult for people of my generation is that there was no recognition of this thing we now call autism in the 1960s for people who could speak. So when I didn't say or do the right things or I didn't respond appropriately, people just thought I was a bad kid, I was selfish, I was self-centred, I was in my own world, I was lazy, I was stupid, and they kind of discarded me. It's only with knowledge of autism that I gained in midlife that I understand the mechanism by which that happened. When I was little boy I really didn't know any of that, I just knew that kids didn't want to be my friend. I had no idea why.

Lynne Malcolm: So despite your difficulties your expertise was in electronics and music.

John Elder Robison: Well, actually I went on to be commercially successful but not by graduating. I was not able to do the things people asked of me in school. I could, for example, sometimes see the solution to problems in class, but I could not show my work and I could not do it in the way the teachers wanted me to, so they would give me failing grades even as I thought I could do the work and it made me very angry, and eventually I stopped going to school. The last grade that I passed was the ninth, and I left home and I joined a rock 'n' roll band and that was my ticket to independence, and that came about because I had this fascination with music and electronics and I learned how to fix and then build sound equipment for musicians.

Lynne Malcolm: And you had a very fine appreciation of music too, didn't you.

John Elder Robison: As an adult I don't know how much I appreciated what you or other music aficionados might think of…I didn't, for example, have an appreciation of the beauty of someone's playing or singing. What I appreciated was the beauty of delivering whatever the musicians gave me true to form. So you might think he sings so wonderfully as a tenor or alto or soprano and he sings these passages with such nuance and emotion, I would never say anything like that, I would think that I was very successful if I delivered his voice to you clearly and crisply and without any distortion. To me that was the beauty of it.

Lynne Malcolm: And you worked with bands like Kiss and Pink Floyd. That must have been an amazing scene to work in.

John Elder Robison: Well, the thing that was neat is that I wasn't actually working for Pink Floyd, I was working for their sound company, Britannia Row. Pink Floyd didn't tour a whole lot in the '70s and when they weren't on tour they leased out this mountain of sound equipment that they had, and I had the great fortune to put together sound systems for many British bands that came and played in North America and ultimately came here to Australia in the '70s. And I had equipment out with soul bands, disco bands, progressive rock, all kinds of different music. And again, it wasn't that I liked one kind of music or another, I just thought it was really cool if I could build a sound system that could deliver country music and then do heavy metal with the same stuff and do both well.

Lynne Malcolm: John Elder Robison. The American hard rock band Kiss performed during the mid to late '70s and they were renowned for their wild live performances in crazy get-ups, using stage tricks like blood spitting, shooting rockets, levitating drum kits and smoking guitars. Well, I learnt later that John Robison was the so-called 'weird guy' who made band member Ace Frehely's guitar smoke, something he's very proud of it as a bit of electronic mastery. You can check it out via a link on the All in the Mind site.

But the scene, the music scene was a real culture, wasn't it, and a band like Kiss…it must have been all pretty crazy. How did you respond to the scene itself?

John Elder Robison: Well, it was a world of wildness, drugs, liquor, guns, all stuff like that that you don't see so much in music, at least openly, today. I really stayed clear of a lot of that stuff because by the time I was 19 or 20 years old and I was doing big rock 'n' roll, I didn't understand why I was the way I was but I understood that I had trouble reading people and I had trouble figuring out what they really meant when they said something. And being drunk or high on coke just made me a drunk or a high fool, and so I wanted to stay clear of that because I had enough challenge without it.

Lynne Malcolm: And you talk about some of your difficulty in social interaction as failed interactions. Can you give me an example of how failed interactions would occur?

John Elder Robison: Somebody might approach me and she might be looking really anxious and upset and fearful and start saying, you know, 'I'm worried about my mother and stuff,' and I would say, 'Well, you're going to have to tell me later because we are late to get to this interview.' And you look at me and you think, well, what a heartless, mean son of a bitch, my mother's got cancer and she is dying in the hospital and he doesn't even care. And the thing is, you are reading all that into my actions and it wasn't there. It's not that I didn't care about you or your mother, I could care very much about you, you could be the great love of my life but I still couldn't tell just by your words that you were worried or scared. And I only responded with what was on my mind, which was that we're late.

And so all too often autistic people fall into that trap and we are vilified for it, where we say what's on our mind, and we are not saying something to be mean to you or dismissive or because we don't care, we are saying it because we don't receive the message of fear and anxiety and worry that you are projecting because you are not saying it in words and we can't get it. If you had come to me instead and you had said, 'I'm so worried about my mother and she is in the hospital and I think she is going to die,' I would get that. But all too often people imply it with their bodies and their faces and I don't see it.

Lynne Malcolm: You went on to establish a successful automobile repair place, but you describe yourself as the weird guy that is into machinery. But that served you quite well in that business.

John Elder Robison: It served me well in rock 'n' roll too, I was the weird guy that built the amplifiers when I was on the road with Kiss back in the '70s. We all had photo IDs and mine said 'Ampy', I was the guy that built the amplifiers, and I was the guy that talked to the machines. I didn't talk to the humans but I could talk to the machines.

Lynne Malcolm: It was during that time that you ran the automobile repair business that you first found out about Asperger's. Tell me about that.

John Elder Robison: Well, that was kind of a remarkable thing. I had got to where I was 40 years old, I had been running a car business by then about 10 years and it was commercially successful because I had this ability to see into machines and focus on them, and people brought me collectable cars. And one of the fellows who came in over a period of years was a therapist and he watched me I guess and talked to me for a number of years. And one day he comes in with this blue book, actually it was from an Australian doctor, Tony Attwood, and he hands me Dr Attwood's book and he says, 'There's this thing that they're talking about in the mental health community called Asperger's syndrome and you could be the poster boy for it. I thought a long time about whether I should say anything to you about this because you are successful, you've got a wife and a kid and business, but I think that knowing why are you are like you are could really change your life.' And boy, it really did. It was stunning for me to hear that. I'd never heard of Asperger's syndrome before that day.

Lynne Malcolm: So it really helped to have a reason and an explanation for the difficulties that you'd had.

John Elder Robison: It absolutely does and it's not have an explanation, it is really important that anyone who listens to this with a young person with autism understands that we've got an explanation for why we are. The explanation is we are less than other people, we are stupid, we're dumb, we're less valuable. And so when you are told you've got autism, you've got Asperger's, for the first time in your life you have a non-judgemental, non-negative explanation. No, you're not stupid, you're not retarded, you're not defective, you are an ordinary fellow with this thing called Asperger's. And that is really liberating. It's a big, big deal.

Lynne Malcolm: Along the way though you have been able to train yourself to a certain extent, observe social interaction, observe emotional interaction and teach yourself.

John Elder Robison: I did. You know, I took Dr Attwood's book and I thought to myself, well, I'm going to, by God, make myself act like everyone else. And today, autistic rights advocates would say you shouldn't have to do that, the world should accommodate you. But you know, we can only go so far in asking the world to accommodate us. The fact is if our inability to read your body language or your facial expressions causes you to think I'm a callous jerk in the first 10 seconds you meet me, you are never going to know me long enough to decide I'm a nice guy. So it's incumbent upon me to know how to act when I meet you. And knowing the ways in which autistic people like me were different, I was able to change my behaviour, and it was really a magical transformation. I began to have friends for the first time in my life.

Lynne Malcolm: You're with All in the Mind on ABC RN, I'm Lynne Malcolm and I'm speaking with John Elder Robison, author and world authority on living with autism.

Once John Robison realised, at the age of 40, that he was on the autism spectrum, he took on the mission of raising awareness by writing and speaking about his experience. One of his books Look Me in the Eye was a New York Times best seller.

He then heard about a revolutionary new brain therapy called transcranial magnetic stimulation. Researchers have been studying TMS for 20 years as a potential therapy for a number of neurological and psychiatric conditions, and it's now an approved treatment for depression in countries including Australia and the United States. But research into its benefits for autism is still in its infancy. However, when researchers from Harvard approached John to participate in a TMS experiment, he was keen.

John Elder Robison: When I heard that these scientists had this new therapy that might turn on the ability to read emotions in other people, I thought, could that really be true? And if it was true, what would it mean for me? And somebody who didn't live a lifetime of isolation because of not being able to read emotions, you might dismiss it, it's crazy to meddle with your brain. But for someone who has had a lifetime of pain from that, I was very, very quick to want to learn more and try it.

Lynne Malcolm: And so what was your understanding of what it is and how it works?

John Elder Robison: My understanding is that the brain is basically an electrical organ. We can change the brain by adding psychiatric medications into our bloodstream and they make their way into the brain. But ultimately all those medications do is change electrical properties of junctions between our brain cells. And there might be an area in one part of your brain that is dysfunctional and you take a drug hoping to help with that thing, but the drug, even as it may bring that one area of your brain into better balance imbalances other areas of your brain because it goes throughout your brain. And that's why so many psychiatric medications have really undesirable side effects. So the idea of using electromagnetic energy fired directly into a targeted region of the brain, I thought that sounded like a fundamentally better idea. And it's not painful, it's using pulses of electromagnetic energy. For a technical geek like me it was very enticing.

Lynne Malcolm: So tell me about the effect. When did you first notice the effect?

John Elder Robison: The first time I noticed the effect I had gone to the hospital, and I had been to the hospital half a dozen times to prepare. I thought when is it going to start? Finally it did start, and I went in and I looked at stick figures on a computer screen and I was supposed to push buttons for whether the face was happy, sad, angry, jealous. And the pictures went by and I had no idea what I was seeing. And it made me sad because I thought maybe I'm just too dumb and I'm going to flunk out of a test before I start.

And they sat me down and they did this stimulation and they said we're going to test you before stimulation and after, we're going to see if there's a result. They said we've got to do this quick because the effect of the stimulation will only last about 15 minutes. And so they stimulated me and they had me do the questions again and I didn't feel like it was any different. And I thought what kind of crazy fool was I to think that they were just going to do something to me and I was going to be a different person?

And so they had me stay there for about half an hour to make sure they thought I was okay and I left. And I drove on out and I turned on my iPod because I would play old recordings of concerts that I had worked with back in the '70s and the early '80s, and I turned on the music, and even now just to remember it is just so overwhelming. I turned it on and it wasn't like I was listening to a stereo in a car, it's like I was back there in a nightclub in Boston and it was 1977 or 1982, and I was standing there at the edge of the stage and I was watching the musicians and listening and it was just so alive. It was just unbelievable, the intensity of it.

And the thing that was most remarkable was that I felt all the emotion of the music [tearful] that I never could before. And you know, before I could…even now it affects me to recall it for you…but I could stand back there with my sound equipment and I could feel proud that I made those amplifiers sing for the audience, but I couldn't feel the emotions that the musicians were trying to impart, and that night I felt it. And it was just so overwhelming, it was just like magic. And I got home and I wrote them an email and I said, boy, that's some powerful mojo you've got in that machine.

Lynne Malcolm: So I guess it made you realise too that perhaps you had been missing out on a whole lot of other things in your life apart from enhanced musical experience.

John Elder Robison: Well, that's kind of a sad side to it, because when they first proposed this to me they said we hoped that this could help autistic people see emotional cues in other people and I thought, well, maybe that's why I'm sad and I'm isolated and alone because I can't see all these messages. I thought immediately of good messages. I thought there must be people who think you're really sweet and I really like you and that's really nice, because I never had any problem receiving bad messages, people said you're a piece of shit all my life, and I heard that and I understood it, but I never, ever got those good messages. And I thought, well, maybe if I do this I'll get those good messages and it's going to be really great for me.

And of course over the next series of stimulations I did acquire the ability to read these messages from people, and they weren't happy and sweet and beautiful and lovely, they were fearful and jealous and anxious and worried and scared and angry. And I thought again to myself, well, what kind of a fool was I because I should know, I pick up the newspaper, and if the world is full of happiness and joy that would be the theme of the news, and it's not. It's trickery and cheating and conspiracy and war and pain and suffering, and that's what I saw in other people. And you know, the pain that I had…I realised that my autism was a protective shield. I hadn't seen that all those years, and it just about killed me, receiving that pain from others.

Lynne Malcolm: And it affected your marriage too, didn't it.

John Elder Robison: My marriage collapsed, my business almost collapsed. And the thing that's really sad is that it was because suddenly I saw the world and all the people around me differently, and I rejected things that I had accepted all those years. And now I can look back on that, now it's been six years. I'm married again, I have a good wife and family life, my business is better than it was before, my ability to engage folks like you…I could never have come to you and had a conversation like this 10 years ago. And you know, if you look back at when I did music, I couldn't even talk to you. You think about all the pretty girls that I must have had pass in front of me when I toured doing rock 'n' roll, and how many did I talk to on the road? None, because I couldn't do it. And today I could engage you or most anyone else, and that's a wonderful, wonderful gift. But boy, it was a really rough ride to get there.

Lynne Malcolm: So the effects of TMS are ephemeral, but you think that you've really changed permanently because of the experience?

John Elder Robison: Well, let me give you an example that I think makes that clear. Every treatment we take, short of something like cutting off an arm or leg, is temporary. You take an antianxiety medicine, an antidepressants, and its effect is temporary too. Now, imagine that you're a person who is born colour-blind and you've had a lifetime of people telling you about the beautiful blue sky and the lovely red dress, but you know the evidence of your eyes and it's black and white. And eventually those kind of words, they just make you angry because there is no such thing to you.

And then you go into a doctor's office and they hook you up to a machine and they do something to you and you walk out and you see colour, and you look out at the sky and you say, my word, that's real, they weren't tricking me, this is really beautiful, it's real and it's here and I see it. And you've get to look around at the yellow cars and the red dresses and the blue dresses and the people with blonde hair and the people with red hair and the blue eyes and the brown eyes. And then a week later it fades away. But the thing is, for the rest of your life you are going to conduct your affairs with full appreciation of the fact that that is a truth. And so it has changed your life in a positive way for the rest of your life, even if you can't see it.

Lynne Malcolm: But to some extent you would caution people, wouldn't you, about TMS, because you responded in quite a dramatic way, but not everyone is going to respond that way.

John Elder Robison: I've got a couple of comments on that. First of all, we do not know how to get striking responses like I experienced from every person, and we probably won't ever get that. Any given antidepressant, it may work for you and it may do nothing for your friend. And I think more than that, TMS is something that should not be, in my opinion, done to children or disabled people without their consent. It's one thing if you are a person like me and you can say I've been lonely and I've hurt all my life because I can't read other people and I'd do anything if I could see in your eyes and tell what you're feeling. It's entirely something else for a parent to take a nine-year-old boy and say he's having trouble making friends at school and I'm going to do this TMS on him and make him a social butterfly. That absolutely I would urge parents don't do that because for me the pain of isolation, it hurt me a lot, but being isolated is what gave me time to concentrate on music. And then my autistic focus, my other autistic traits allowed me to become a star engineer. So that pain was kind of a part of what made me a success. And you've got to really think hard about that when you consider using a treatment with a young person. I definitely think that TMS is something for adults to go into with their eyes wide open. And you should think about my experience as an autistic man as a metaphor for what might be.

Lynne Malcolm: So if the symptoms of autism and Asperger's can be mitigated by something like this, what are the implications for the pride that is beginning to develop in the neuro-diverse community?

John Elder Robison: People often say why would you do that if you're such an outspoken advocate for neuro-diversity and acceptance of autism? I am. I believe with all my heart that autistic people deserve a place…really a place in the sun, it's our time. But I also know that if I think you're sweet and I want to get to know you and I walk up to you and I try and start a conversation and I say and do the wrong thing because of my autistic disability and you don't know I'm autistic, you can decide that I'm a jerk and turn away from me and I will never, ever have a chance to start. And so I think to myself wouldn't I want to make myself the best person I can be? That to me is no different from you deciding I want to look good, I'm going to lose 20 pounds and I'm going to become a marathon runner, I'm going to be the best I can be. Well, me making my brain the best it can be is exactly like that.

Lynne Malcolm: So now you've remarried since your first marriage. How does autism and your experience of TMS play into that relationship now?

John Elder Robison: I think that I have a better understanding of emotions. I have a much better understanding of how my actions can affect other people. And I think that ultimately, whether you wanted to participate in TMS or some kind of therapy to help reduce an aspect of autistic disability, first of all I would say that TMS is not and never will be a cure for autism. Autism is a neurological difference that will always be with us. But it is a tool that may remediate things that disable us and make us suffer. I say that in recognition of the really sad fact that the suicide rate for autistic adults is nine times the suicide rate for folks who aren't autistic. And if TMS could head off some isolated person's suicide, just like an antidepressant could do, I think that's a tool that we have a duty to make available to those who wish to use it.

Lynne Malcolm: So how do you see your future?

John Elder Robison: I think that it has become really a passion of mine to go out and speak for the rights of autistic people, to show the rest of the world that we autistics, we are not smarter, we're not better, we're just different, and the rest of the world needs different people. We are a part of diversity, and we are something that's needed. And I see my mission is to go out and spread that word. I think it's an incredible honour, and I would say that we autistics are just coming into our time. We have to stand up and demand the acceptance other groups have achieved.

Lynne Malcolm: Thank you very much John, it's been really lovely to talk to you.

John Elder Robison: Thanks so much for having me with you.

Lynne Malcolm: John Elder Robison. His latest book is called Switched On and is published by Scribe.

For more details from today head to the All in the Mind website, just follow the links from the ABC RN home page.

Thanks to producer Diane Dean and sound engineer Joe Wallace.

I'm Lynne Malcolm, catch you next time.

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