New from the TMS Lab and Autism Research

John Elder Robison Community Member April 28, 2011
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    Last night I attended Brain Health / Body Wealth at Harvard Medical School. Dr. Alvaro Pascual Leone told a rapt audience about new discoveries in brain plasticity and what it may mean to us, especially as we age. Then Dr. Dan Press talked about practical neurology, and what's on the immediate horizon for conditions like Alzheimer's.

     

    After they spoke Paul Levy came to the podium. He's the head of the Beth Israel hospital, and he spoke of the need for more funding to support the cutting edge research that doctors like Alvaro and Dan are pursuing. To my surprise, the event finished with this video of me:

     

    www.youtube.com/johnelderrobison

     

    I knew they were going to show it, but I'd never seen the thing projected on a big screen and I almost felt embarrassed being up there like that. But I believe in all I said, and I believe most of all in the promise of the work Alvaro and his team is doing at Beth Israel neuroscience.

     

    There's a lot of talk about genetics in the autism world. And genetic research may lead to discoveries that help my grandchildren. However, genetics study is not likely to help you, me, or our kids, friends and family. Research like Alvaro's - using TMS to remediate disability in people like me - has tremendous promise for all of us, in the very near future.

     

    Looking at that video, I was really struck by how far I've come in the past two years. If you watched that earlier video of me, watch this one now, from two summers past. Look at the differences in me. In this earlier video, I am robotic and mechanical. My voice is different. I am stiff and rigid. It's almost a different person.

     

    http://www.youtube.com/watch?v=BIZsYGxXHis

     

    Compare the animation in my face, my hands, the range and prosody of my voice . . .

     

    TMS has played a big role in the transformation you see between those two films. If we could do what's been done for me for anyone else who asked for help on the spectrum . . . it would be a parent or clinician's dream come true. And I believe we will. But not quite today. We are so close, yet also so far . . .

     

    People write me and ask, "How can I sign my child up for this?" I am always sorry to say that clinical trials are still some years in the future, even though you can join our scientific studies now. If you'd like to talk about joining a study you can write Lindsay Oberman, Phd at loberman@bidmc.harvard.edu

     

    Do join us; but keep in mind that we are engaged in scientific discovery. It's too early to promise or even expect any specific result. We're still experimenting - stimulating different area of the brain to see which ones are involved in what I call emotional intelligence. There's no way to find that out, other than by doing experiments with autistic people like me. Or you - if you join me.

     

    If you join us, the experiments may change you, or they may not. The scientists can't make any promises. Not yet. We certainly can't set false expectations, yet what I have seen gives me great hope. I know what's in there now. Whatever happens, we are advancing science and we are on the fast track to solving this particular set of problems.

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    As I say in the video, some of my TMS experiences have been totally life changing. Turning on the ability to see into other people overnight is, as I describe in the video, one of the most powerful emotional experiences of my life and the effects of that are still reverberating today.

     

    But other TMS experiences did nothing. A few may have even made me a bit worse. That's what science is all about. You try different things, pick the winners, and sharpen your focus for the next round of research.

     

    I talk in the video about how one stimulation turned on the ability to see into others. We all agree that's a wonderful, incredible result. But it was also unexpected. The scientists were prepared to measure a subtle temporary change in me. Instead, we got a major permanent shift.

     

    While that's great, it also gives us pause for thought. How will we measure such changes in others? And if that stimulation produces a permanent change, we have to be very careful, because other stimulations could produce permanent changes we don't want.

     

    That's why we have to move slowly, despite everyone wish for speed!!!! The last thing we want to do is damage someone in the quest for insight.

    So I've talked of the caution and worry and where we are . . . what about the promise?

     

    TMS has shown me a world of emotional response that I never knew existed. I have always had deep feelings, both for myself and for others, but I lacked the immediate connection. When the TMS turned on "seeing," I was able to look at another person's smile and immediately smile back. I look at people and I just sense what they are feeling. To someone like me, it's almost magical. If you're not autistic, you might say, so what? If you're like me, it's hard to even imagine such a power of perception.

     

    TMS has shown me what I've missed all these years, and I want to make up for all that lost time. But it's also turned my life upside down, as the balance of wants and needs changed for me overnight, and I see many of the people in my life in a different light.

     

    I wish this work were as easy as it seems when we hit it right. We stimulate an area, and get a powerful result like I describe. But then we stimulate it again, and nothing much happens. Why? We don't know. We stimulate an area in me with great effect, and it does nothing for someone else in the study. We get a result on someone else, and it does something opposite for me. How? Right now, it's an extremely complex puzzle, probably the most complex puzzle I've ever known in my life.

     

    I believe Alvaro and the scientists will unravel it, and I will be proud to make whatever contribution I can. Alvaro and his team at Harvard Medical School and Beth Israel Deaconess Medical Center are truly the best in the world, and they are defining the cutting edge of autism research.

     

    We are going to find the answer to this puzzle. I feel very confident that we will learn how to "turn on" emotional intelligence in other people like me. In doing so, we can take away a huge component of disability from high functioning autism.

  • And it does not stop there. What if the mechanism that holds down emotional insight also holds down speech? What else may be affected? The possibilities for that are staggering for the more seriously impaired population.

     

    I'm proud to be part of it, that's for sure. And I welcome any of you, if you want to join me on this journey.

    Here are some of my other TMS autism stories:

    Look Me In The Eye: Brain Plasticity and TMS
    Look Me In The Eye: A return to the TMS lab
    Look Me In The Eye: Brain Plasticity and how it affects us
    Look Me In The Eye: A summary of my TMS posts

     

    For more of John's insights check out his blog Look Me in The Eye

     

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