Wednesday, February 10, 2010

New from the TMS lab and autism research


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.

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

24 comments:

Yogi said...

I wish I lived closer to where this is being done, as I would love to be a "guinea pig" for studies that could help future generations. (Perhaps even my great-grandkids...)

EquiisSavant said...

What makes you surmise that if they fix the emotional circuits in Autism, they can fix the speech ?

What about the reading and writing ?

How about the working memory deficits ?

Curious what you think and why.

Thx for the informative post !

Terramuggus said...

John,

I'm glad you've had positive responses to the therapy, and wish you much more. I'm just curious as to whether or not you've also been taking any medications, vitamins, minerals or herbs during this same time? Just wondering if any additional interventions would enhance or negatively affect potential TMS outcomes...

Kim Rossi Stagliano said...

15 in December John.... I love this. And thank you so much for putting a voice to the treatment.

jonathan said...

If I write Lindsay Oberman will she tell me just about studies that her lab is doing or studies on the east coast or will she be able to refer me to studies on the west coast? I called the person at UCLA who heads up the TMS lab there and he never answered me back

John Elder Robison said...

Jonathan, I would encourage you to talk to Lindsay, either by email or by phone. I do not know how much help she'd be with sutdies at other universities though, simply because she has no way to know what they are doing. There is a 2-year lag between doing research and seeing your results in the scientific journals, so stuff happens everywhere and unless you are in the thick of it, you don't know. Lindsay is obviously focused on the work here in Boston because that's where she's been these past years.

Let me know what happens

John

fullsoulahead.com said...

You are a brave pioneer John. I appreciate you.

Sandra Mahan said...
This comment has been removed by the author.
cath c said...

john, i'm wondering if there is a way i could get my 11 year old to particpate. willing to travel. i'm sure he would be into the idea from a purely sci-fi turned reality way. as his mother, i see he is so close, but just misses a lot of basics of engagement. i know he really wants that skip in him to be resolved. very interesting watching him develop in the past year or so. like i said, so close, but the wiring is just off.

vsheehan said...

Hi
Sorry to put this comment here. I sent out the link to you Blog post you put up about TMS . The one on FB. I tried to comment there but the comment section gets an error. The thing is I did not send the whole post but the link as I did not want to be rude. Unfortantly the link is not working for a lot of people.
As I sent out the link as a way to get people to donate to the TMS Lab 's studies I was wondering if it was OK if I could cut and paste your whole post into an email for my contact list. As I said before there is something wrong with the link. I assume it has to do with not having a blogger account as the link works fine for me.
Is it OK if I send out the whole post to my email list to drum up Donations?
vsheehan

John Elder Robison said...

vsheehan . . . you are welcome to copy the post but if you just give the http://jerobison.blogspot.com link I have made TMS one of the static pages. Look at the top, right below the title bar of the blog, and you will see TMS as one of the fixed choices.

Thanks for your support and efforts.

woof

John Elder Robison said...

EquisSavant . . . I think that about speech because Alvaro's team did a study (the results of which are now being submitted for publication) that suggests that may be the case. I don't want to pre-empt his journal article but he and I have talked about the results from a study last year, and where we might go in terms of new language studies.

Did you read any of my stories on brain plasticity? Plasticity (and abnormal differences in such) may well be implicated as a causative agent in many of the facets of autism

John Elder Robison said...

Tarremuggus, I take organic vitamins but not as any kind of autism therapy; I just take vitamins

nmh-nmb said...

John - Thanks for sharing insight on TMS. My child may be participating in a pediatric study using TMS for hemiparesis (stroke).
I appreciate you sharing your experiences.

vsheehan said...

Hi
I have received a bunch of emails saying the link for Kris Laping is not working. Could you put her full email up and or a phone number. I have people who are interested in donating money for the study but can't find contact info for Kris Laping online
Thanks
vsheehan

John Elder Robison said...

Try Kris at klaping@bidmc.harvard.edu or her colleague Kelly Wallace at kwallace@bidmc.harvard.edu

newnoz said...

I'm curious to see if this allows you to keep the positive parts of Aspergers and have a more neurologically typical relationship to the world. Also , is there a down side to this? I mean other than realizing how odd you used to seem to other people more directly. I know i can seem odd and i don't like feeling rejected or left out anymore than anyone else but it might seem like reviewing ones life in a whole different context to become suddenly NT !!

jmg said...

I read your blog and Paul Levys so it was funny to see you both together and i'm very interested in the plastic brain research. My husband and my daughter have a lot of aspergian characteristics and she gave me your book to read which has helped our family understand on our good days at least. I've often thought that they didnt care when in fact they feel things very deeply. Also my husbands mother seems to be different also. Thanks for the book and the blog its very interesting.

Queenbuv3 said...

Stop by my blog and get your award!

K said...

John
are you going to come to Johnson City on April 14th ?
What are you going to talk about it ?
I would love to see you

kyra said...

john! i LOVE this post and i'm so excited about the work you're doing, about this TMS.

i watched both videos and it's really true. there is a startling difference in you from one to the other. wow.

any word on your most recent project? i've been thinking of it and you.

(p.s. let me know when fluffy could be a candidate!!!!)

woof.

Alexander said...

Hello all,

I have been administering TMS treatment over the past few years and recently opened a new TMS treatment center (The Brain Treatment Center, www.braintreatmentcenter.com ) where we administer TMS to individuals with, among other disorders, autism. We are located on the west coast and very excited about the results that we have seen in individuals we have treated with TMS! Feel free to contact me for any questions you might have about TMS treatment, as well.

AWTM said...

John, I have been following you for a while now, and use videos of you to help and inspire my son age 9, who is a profoundly gifted Aspergian. I also work at an office where we just got a TMS neurostar....

I do so hope this hold some hope for us

Kay Hyde said...

Thanks for sharing this very informative article. TMS is widely used now a days for the treatment of depression. They said that this treatment has no side effects and can greatly alleviate the symptoms of depression.