Transcripts For CSPAN2 Book Discussion On Switched On 201606

CSPAN2 Book Discussion On Switched On June 4, 2016

John robinson is an authority on life with autism and the best selling author of look me in the eye, seeing different and raising cubby. He is a scholar and resident at the college of william and mary. His book details johns experiment with a dr. Led using transcranial magnetic stimulation a new experimental brain study. The hope was they could understand and address the issues at the heart of autism and aspergers. This is a truly unusual memoir. Join me in welcoming John Robinson and dr. Leon. Hello, thank you for joining us all tonight. I would like to point out that looking at us here, cant tell who is the harvard professor and who is the inmate. In fact, that is in part, one of the changes from this expansion of emotional sensitivity and range that i have experienced through this. This book of mine, this switched on, book is really a remarkable story. But one thing it is not. It is not a story of curing autism. Some people have jumped to the conclusion that is what this is about. And it is not. What this is about is a therapy, that in my opinion, is one of the most powerful tools available to neuro scientist today that no one knows about and the reason know one knows about it is because it draws electricity from the wall and sends it to your brain where it can make changes. There is no pill, no pharmaceutical company, or multimillion ad campaign. But the effects of these tms experime experiments on me, they were not treatments, they were experim t experiments and they were lifechanging. I think, although i am an autistic guy, and i talk about how the tms experiments turned on the ability to see emotions in folks like you, which for me was a magical thing. I mean it was magical and wonderful but at the same time it was devastating and overwhelming so it was both. But think of that as kind of a metaphor for what it can do elsewhere. Tms isnt just an autism therapy. They are looking at it with epil epil epilepsy and being used to treat anxiety and depression and partly remediate symptoms of intellectual disability. You might wonder how i got involved in this. It is kind of funny. I was starting to speak in public after the publication of look me in the eye. I was at a college in western massachusetts, and what looked like a grad student approached me, and she asked me if she could hand out fliers for a study she was doing. There she is. She is right there. Stand up so they can see you. There she is. This is lindsey alberman who got it all going. [applause] so lindsey announced she was a postdoc at this place world beth israel medical center. I didnt even know thought that was. By the time she told me about this i was convinced i wanted to hand out fliers but also try it myself. I had so many questions. She suggested i could come meet here boss and she told me her boss name. I didnt know who he was but i went home and looked him up and found he was a professor at harvard medical, a dean in neuro science, and heads a place at beth israel hospital, one of the top hospitals in the world. I thought shit, i hope i didnt chase them away with my rudeness. But luckily they were dealing with autistic people and were prepared for that. I guess what i will do is i will have the fellow who thought this whole thing up tell you how he described it to me when we met. Okay. Good afternoon. He were running a study and we wanted to get people to understand the goal of this study and decide whether they want to participate or not. It is a process. It is not handing out a little written thing. It involves talking with the subjects, explaining what you are doing, and when John Robinson said he wants to talk more, we thought that is part of what we are supposed to do. We met with him and told him with tms is. And briefly for you to know, tms stands for transcranial magnetic stimulation and it is a misnomer. A discovery turned into medical technology. We pass through a copper wire coil on the subjects head, a very strong current, very, very brief. 50 micro seconds. There is a rapidly changing current in the Magnetic Field that is very strong, but very brief goes through the skin, skull and into the brain and induces another current. It is electric stimulation without having to open up the skull. We settled on tms which is a name we can handle. It is essentially using electricity to modify our organs. If we know where the modify the electricity, big challenge, and how much to modify the electricity, another big challenge, we might be able to use it for therapy. But before that we can use it to understand now brain activity relates to a concern pattern. That is the study we were interested in. We were doing this at the time and lindsey was spear heading. They had to do fundamentally with the question is the mechanisms of learning, the mechanisms of brain plasticity, in Autism Spectrum Disorders normal . Abnormal . If they are abnormal, are they too low . Or too strong . How do those relate to things like ability to relate to other people, empathy, learning to speak, finding the right words, controlling their impulses how they relate to behavior were the questions. What we tried to do was modify activity for a little bit of time, a few minutes, use those minutes as a window to test him, or other subjects, and they would say the effect is gone and it is a transient disruption. We know that is the case in some subjects and we were applying it to autism. We told him what it will look like. You will come into the lab and we will do tasks on the computer. We will use this tms on different parts of the brain. We will not tell you where. But we have specific reasons to target those different areas. And afterwards, we expect some multi areas will have some effects and others have other effects. We want to capture those effects. We make sure by the time we are done in the lab the effect is gone and we will follow enough to make sure that is the case. So, we had this kind of dry, emotion emotionalless description of what would happen. They had me look at stick faces, eyes and different patterns. Before doing the stimulation i would see the figures flash by on a computer monitor and push a button if it was happy, sad or angry. I looked at those things and i had no idea what i was seeing. I said to the scientist who was testing me, it was really upsetting to me because i could not get any of them right. I said if i get any of these right it is random chance because i have no idea what i am seeing. They tried to reassure we saying there is no right and wrong answers and i thought that is crazy, of course there is right answers, no one makes a test without right answers. It made me feel broken in a sense to see that. I sat down and they started firing the tms into the my head. What does feel like getting zapped by tms . They have a coil that is the size maybe smaller than a baseball and they hold it up to your head and have cameras looking at me after they shot a birch of mri images of my brain so they had a precise map and they could locate the coil exactly where they wanted to stimulate. They turned the coil on and it started firing energy into me one pulse a second. Every time there was a pulse i would feel a little tap on the top of my head. It wasnt painful, it wasnt pleasurable but it put my mind in neutral. They assured me i would not feel anything in my head from this because it wasnt so. What happened was i was thinking about what i was going to do when the left and the thoughts wouldnt stay in my mind. I would try to count, one, two, three, four and lose my train of thought. So then i kept sitting there and all of a sudden the fan went off, it stopped, and half an hour had passed. They rushed me over and had me do the looking at the faces and stuff again. I didnt really think i did any better. Then it is time to hand me to the neurologist to ask questions. And he asks he what day is it and i said it is tuesday. And he looks at me and he said it is thursday. I said i am selfemployed so i dont Pay Attention to that. I could see me screwing it up and head to a locked cage in beth israel. But i answered the rest of the questions good enough and he let me go. I started out driving home and i had been at the hospital for four hours. I thought what kind of crazy fool was i to think they would zap me like that and i was going to walk out different or anything. I thought, well, you know, i said i was going to do this because it was going to advance science and i believe in advancing science to help autistic people. But nothing happened. I turned on my ipod and was playing music from right here. Back in the 70s, as a sound engineer i used to play all clubs up and down here, i had a recording of a soul broadband known for singing part of the sound track for saturday night fever back then. I listened to them sing and it was alive again and like i heard when i was 18 years old. It was so overpowering it made me cry. I listened to that music all the way home and i could see the performances, it was so vivid, i could see the musicians on the stage and listen to each individual instrument and singer. I havent had that ability in 30 years. But that was what made me a star in producing music back then. You know, i wrote and said that is perful mojo you have in that thing and i asked him why he thought that happened and nobody knew. We did more these experiments. Some didnt change me at all. Some made me happy, some fear fearful, some anxious. And he said we should be happy when a good thing happens because it could be bad. And i said will i see monsters . He said no, you could be unsettled. Over a period of four years when he did this, there were pour stimulations where i saw into people just like seeing into the their souls. Those experiences were temporary but they changed me forever. You know, something that people find hard to believe is they think how can a momentary experience in a Scientist Lab change you forever. Let me give you an example. Imagine you are somebody who is colorblind and all of your life you get to be my age and hear about the beautiful blue sky and pretty green grass and you see shades of gray. After a while you get what they called maladaptive behavior. You start to think this is making me mad. This is bull shit. I dont know what the evidence of my eyes say and you go into a lab like his and they switch on colors. And all of a sudden you realize they were not bullshitting you. You walk out of the lab and a few days later the color fades away but you will never be the same because you will conduct the rest of your life with the full knowledge of what color was and you will know what color means to everyone else and when people talk about color to you you will not be bad because you will know about the thing they were talking about and you will be different forever. How could seeing emotions change me in the same way . You know i wrestled for years with the answer to that question. I asked myself, i like to emphasize, i thought did i imagine i saw emotions . But, no, the changes in my life are too striking to be my imagination and other people have had the same affect now. How is it i came out changed and i will ask alvero to explain that even though we dont know for sure. Why interrupt with me . You are the guy with the answers. I wish. I realized in doing this we were pushing the limits of known science in this. You are closer than me. I am the guy with the question. We put a lot of time into trying to figure out what accounts for what affects. I am in neurology and i take care of the patients. If my patient is better because of me, or despite me, it doesnt matter. If you walk out of there and go what a jerk, but i feel great, i did my job. It is leveraging anything you can bring to the table from biology to the medicine and the art of medicine to the art of interacting with somebody. If i am the medicine and you get better that is right. When i am a scientist, it is a different role. If you walked out of my lab and said it changed me and what changed is the tapping senati sensation, or the fear of doing an ex experiment, or the twitching of my face, that is interesting but not what i am after. What we are after is are the mechanisms of plasticity normal, different or how are they . Is it this part of the brain . That is part of the study. We spent a lot of time blinding him so we didnt know where we were stimulating or what we were predicting. Reading the story gives you a very different perspective because he is all of a sudden in a very articulate way from someone who is the participant and telling you things you would not think of asking. I know what i want to find and it is given time in the lab but for the most part we forget that that moment in time in the lab may have effects that we can capture that will change you, that will have an impact on who you are in a lasting way. So you have do an ex experiment and because of these 15 minutes of time you make somebody able to realize i can forget the meaning of intention. If you were trying to kill me but didnt that is okay. What are the consequences of that insight on the people that have it and realize i may come to terms with that and we dont ask those questions. Frankly, we didnt here them. It is all about the person. It is the person that had a stroke and cant walk. It is not autism. It the person. In an experiment, human experiments even, we try to identify what is coming across all of my participants and blur the differences and dont focus on the individual different char characteristics. This is a call to action for all of us to realize participating in a study has opportunities we dont know all about. It has consequences that may go far longer, much more transformative than what you expect. What you expect, plasticity would be abnormal and it is. In autism disorder it is actually better than normal. It last certain times and it last longer. They cannot acquire knowledge or skills they can better. But the first thing you learn and the withe next one and next one. So depending on the setting and Life Experience it can be a disruptive way of the brain junctions. William james said you want a brain with the right amount of plasticity. You want you dont want to walk out of the room permanently changed forever. We want things to impact our brain a little bit but not change us forever. We didnt expect to have that effect but the mechanisms of plasticity are better than normal in at least some people with autism spectrum disorder. So i could change more than anyone ever anticipated because i am autistic. That ablg that actually makes me think of something i owe a great debt to. When we first met, he had read by book, look me in the eye, and he told me that he was drawn to talking to me in part because of my descriptions of how i became a digital engineer, disciping sound effects at melton bradley. I was an engineer working for the pink floyd sunday company designing sound effects for rock and roll. That was analog circuits. The world was in that time going digital. Everything was micro processor based and i didnt know anything about that. I knew the Old Technology of the 50s and 60s because that is what we used on stage and amplfiers. But i had a chance to get a job at micro bradley but they wanted a micro processor familiar engineer and a digital engineer who could design digital effects. I thought they would not have anyone Better Qualified to define this than me. All i have do is be a digital designer. So i went to the University Research center and i just looked at some books on digital design, studied them for a couple weeks, and went down there to Milton Bradley and told them i was a digital designer and they hired me. All of my life, i had sort of lived with the feeling that well, i just bullshitted my way into a job and i quit Milton Bradley ultimately because i felt i was a fraud. And actually it was this fellow here who was the first person to tell me different. He said that is not a story of being a fraud but that is the kind of thing you see in descriptions of autistic savant behaviors that you learn this skill in two weeks. He said maybe you didnt know as much as some other people but you knew enough to do the job. He said if it was just luck and bullshit you would have failed. But instead you made yourself analog engineer and succeeded and then a digital engineer and then you made yourself other things and succeeded. That was the first time in my life i ever really had somebody recognize that it was a gift and not just some cheap trick to get a job. But also i realized what a remarkable gift some of us autistic people have. You know, he said to me a little later, he said we have no way of going how many other people there are with abilities like that. For all we know, they are tilling fields in india and china and we will never find out. It was a most remarkable story. If you read the medical Journal Articles these folks published about the studies i took part in and you read this book of mine, you would never know they were the same. The only points of comparison are both articles describe things like looking at faces and stick figures and all. But beyond that the experiences are totally different. I think what was alluded to was when they setup an ex experiment in medical research, it is a tightly defined thing. Smooimz sometimes there are affects that are almost magical. The thing is he wasnt an autism therapist. He wasnt a doctor treating me. He was a fellow engaged in research i believed in and the effect on me was a stunning affect side effect none of us expected. I think the lesson to take away from that is that sometimes scientist may structure studies and the outcome of the study that is meaningful may be something out of the bounds of what they expected. What would you say about that . I think it is really a human presentation and humans are an active par advertise participant. If they fail to give us insight, i think that is absolutely the case. You have the number question. You had no idea what would happen to me like that. Fair enough. That is exactly the point. I agree. I think there is another aspect. I think there is a great responsibility coming from it. The potential in consequences and they are important to be aware of. That often gets packed away in a way. Of course the things we just dont know. But we dont make sure that the person quite understands what that really means in terms of transforming peoples lives and that is important. It makes it very, very clear. So i think that is important to realize. I think there is another important take home lesson. I love the similar story of seeing the colors. The notion there are moments of insight, and they maybe brief, but you become aware of something and seeing the experiences for all of us like that in chance is one opportunity. It takes a moment of insight led your brain to function in a different way that was more adaptive and therefore quite liter literally the brain improved itself in a way it would not have been able to do without that moment of insight. So affected by this compare to other people in the study and of course i think that i am the only one who went in

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