TMS - Transcranial Magnetic Stimulation as therapy for Asperger's and autism

Transcranial Magnetic Stimulation
TMS for autism
TMS for Asperger's

< My son Cubby in the TMS lab, February 2010 with Ilaria Minio Paluello, one of the scientist's at Harvard - Beth Israel Deaconess Medical Center

I’ve been writing about TMS and its promise for the past two years on my blogs.  TMS – for those of you who are new to my stories – stands for Transcranial Magnetic Stimulation.  It’s a process by which scientists focus powerful magnetic fields on specific area of the brain to enhance or inhibit them.  By doing so, our very cognitive processes can be altered. 

For the past two years, I have been working with Dr. Alvaro Pascual Leone and a team of scientists at Harvard Medical School and Beth Israel Deaconess Medical Center.  Their website is http://www.tmslab.org/  Alvaro asked me to join his team after reading an early edition of Look Me in the Eye.

I'd like to share some of my experiences here . . .

In the beginning, I was reluctant to describe the full impact of TMS for several reasons.  First of all, I doubted myself.  Some of the changes were so powerful I wondered if they were real or if I imagined them.  I even doubted if anyone would believe me.  And once I began to see similar changes in other study participants, I became fearful of coloring the results of ongoing experiments, or setting unrealistic expectations in people.  However, enough time has passed that it’s time to share some of what I’ve experienced.   

I can sum up what’s it’s done for me very succinctly.  TMS has been the lever that allowed me to roll the boulder of autistic social disability out of my path.  Today, thanks to Alvaro and his team, my world is brighter, more colorful, and more alive than anything I knew before.  And best of all, I am fully engaged.  I’m no longer an outsider.  I have gone from feeling like a social outcast to feeling like I can talk to anyone, most any time.  It’s a magical thing.

What happened?

The answer is simple.

TMS turned on the ability to look into another person’s eyes and read their inner thoughts.  But what does that mean?  If you are not autistic, you were born with more or less of that ability, and you take it for granted.  If you are autistic, you cannot know what having this power means.  I say that because that’s how I was for the first 50 years of my life. I too had no idea until TMS shined a light for me.

Watch me talk about what happened here, in this four minute video

Now, for contrast, watch me in this video shot by my brother, shortly before the life-changing TMS experiments.  The difference is striking.  The range in my voice, the life in my face, my animation and engagement . . . it's remarkable.

I’m not suggesting that TMS gave me ESP.  After all, this is real life, not science fiction.  What TMS gave me is the same ability the other 99% of humanity takes for granted – the ability to read ordinary nonverbal cues from people.  That’s the grease that makes social interaction work.  Now that I've experienced it, I can safely say that knowing such abilities exist intellectually is totally different from actually feeling and living with those same powers. One is imaginary; the other is real.

What I learned from TMS is that you can’t have any idea how important this nonverbal stuff is for social success unless you experience it firsthand.  Some people are like I was, social misfits and outcasts.  Others are the life of the party.  I’m one of the few people who has experienced both those states of being, thanks to the power of TMS.

TMS has had other effects on me too, but the "social functionality" is by far the biggest.

Having said that, I should tell you about one more revelation TMS has brought us.  Lindsay Oberman, one of the scientists who came here to work with Alvaro, has developed a way to measure brain plasticity using TMS pulses.  Emerging studies are suggesting that excess plasticity is a key factor in autism in general, and Lindsay's work has delivered us a tool for measuring that plasticity in anyone.  What does that mean?  It could lead to a lab test for autistic brain traits.  Can you imagine what a big deal that would be, to replace "asking questions and rendering opinions" with a hard scientific test for autism?

Here's a link to a story I wrote on brain plasticity

We have really just scratched the surface with the potential of TMS in autism.  And I have not even mentioned what the lab is doing in other areas, like depression, epilepsy, stroke recovery, and other disorders . . .

I've written a number of stories about my experiences, and in fact the whole thing will end up as a book in a few years.  For now, here are links to some of my TMS autism blogs:

My Feb 15, 2010 TMS story from Psychology Today

Brain Health, Body Wealth TMS

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

Standing on the brink - thoughts on changing one's brain, from Goodreads, spring 2008

Here's another perspective from my friend Michael Wilcox:

My Experience with rTMS (repetitive Transcranial Magnetic Stimulation) | Michael Forbes Wilcox

And this perspective is from a female Aspergian in our study

Seeing with a different eye

The photo below shows me, Development VP Kris Laping, and Dr. Alvaro Pascual Leone in his office at Beth Israel Deaconess Medical Center last year.













Some of you who have read my book will recall my statement that I do not need a cure; just understanding.  You may wonder how I might reconcile that widely disseminated opinion with the way I've embraced these TMS-driven changes in me.  I'd like to address that, if I may . . .

When I talked of a "cure" in 2007, it was in the context of deep, dark, and menacing "modifications" that had been touted elsewhere in psychiatry.  At that time, the only tools available to change someone like me were sledgehammers - heavy medication and the like.  There was no such thing as a real cure, and I knew it.  At the same time, once I knew AS was not a disease, the "cure" idea became sort of offensive.  So the idea was more a vague threat than anything else.

What I have experienced today is not any kind of generalized "cure."  In fact, many of the screening tools for autism - including Lindsay's state-of-science plasticity test - show me to be just as Aspergian as ever.  What TMS has done is this:  It has markedly reduced the severity of a behavioral aberration that was holding me back from realizing my full potential.  I wanted to join the world of men more fully, but my social disability was hampering that.  Today, I still have disability in that area, but it's markedly reduced.

 I don't see anything wrong with improving myself in that way.  You might say I've made my mind stronger, just as I've worked out to make my body fitter.  I have not partaken of any "cure;" I've just worked on minimizing my weaknesses; something I've done all my life and allude to elsewhere in Look Me in the Eye.  No one in the TMS lab talks of "cures;" rather, we talk of helping reduce specific components of disability - something that may or may not affect you.

That kind of thing may not be your cup of tea.  If so, I understand.  I'm well aware that there is a tremendous range of opinion on this in the autism community and I can accept anyone's point of view, for themselves. We should all be free to choose.

You may now wonder . . . what's next?

At this moment (February 2010) we have ongoing studies measuring brain plasticity in autistic, NT, and other people.  We have cognitive studies aimed at finding ways to improve "emotional intelligence."  And we have more studies and tests in the works . . .

Alvaro and I have discussed experiments that may improve speech and language in autistic people with severe language impairment.  Alvaro's team has already completed an initial study that suggests that TMS can improve speech in people on the spectrum, and we are getting ready to try to move from laboratory results to what I'd call "real world observable" results.  Can you imagine what it would mean if TMS could remediate certain autistic language impairments?

We are also talking about a program that would combine TMS and behavioral therapy to make real-world improvements in the lives of AS people by increasing empathy and social insight, based on the discoveries I've written about above.

So what's holding us back, you say!  Let's go!  There are three things we need more of:  Time.  Money. Research participants.

There's not much we can do about time.  But YOU can help with money, and you may be able to volunteer for our studies or recommend them to those close to you.

If you'd like to talk about helping fund Alvaro's work in the TMS lab, I encourage you to write Kris Laping who heads up fund raising for this part of Beth Israel Medical Center.  Beth Israel is a teaching hospital of Harvard Medical School, and there's no more worthy medical organization in the world, in my opinion.

If you'd like to know more about joining our studies as a participant, write Lindsay Oberman  Lindsay is a brilliant postdoctoral fellow who's taken on the job of talking to volunteers for the various TMS lab studies.

Feel free to pass this along to anyone you think might benefit, and feel free to write me if you'd like to know more

John Elder Robison

14 comments:

m said...

Dear Mr. Robison, I am the mother of a 15.75 year old boy (his comment) who has Asperger's - and who has experienced some of the same childhood issues as you have. Initially he was misdiagnosed with ADD (happens alot apparently in small towns with less educated doctors)and was correctly diagnosed at age 6. We've tried many things to help him, which has been a huge challenge - as he is on both extremes of the spectrum (highly intelligent,highly "socially challenged".....hate those words). He's an extra ordinary young man, for whom I believe, the world is just not ready for. Therefore he has such a hard time conforming to this unforgiving worlds' view. To get to the point - we are currently going to neurofeedback (my son has been under an extremely "dark cloud" this past year....worried about depression). What are your thoughts on neuro - or biofeedback? Did you ever do it?
Thank you very much for helping to make the world more aware....and that it's not a disease....it just is. Smiles, CJ's mom....

mirabee said...

Hi John,

This piece was extremely interesting to me. I try to follow your blog when I can, by the way. Anyway, I was just wondering if they have tried this treatment for people with traumatic brain injuries. Thanks!
Mira (whose book you are reading right now).

map77 said...

My 29yr old son has Early Infantile Autism. Has this therapy been tried with those who function at this lower level of autism? Mary Ann Puckett

RD said...

Dearest Mr Robison,
Can TMS be used for children? I'd sell my house to help my son - he's very bright but can't figure out social skills, and he's so very lonely.
Thank you,
RD
ps. most useful Autism/Asperger's resource: Look Me In The Eye - don't take this lightly, I read everything I could find when my son was diagnosed, and your book helped most.

basketwater said...

i also struggle with asperger's syndrome. i first heard of tms when i read about dr. allan synder using it to shut off the left side of the brain, giving people enhanced creative abilities. now that it can be used to turn on more higher functioning processes and increase social functions, i very much desire to see the world as neurotypicals do. i live in florida, are there any places you could recommend and email to me?

basketwater@hotmail.com

evey said...

ok, so i don't have aspbergers, but i have something quite opposite... i am a nurse who can't stand to work in the health care arena, because i can't shut off the social aspect of my brain ... i have to put my nose to the grindstone to comprehend the sciences, but the social/emotional part won't shut up! i generally drink alcohol and take anti anxiety agents to shut it off... has anyone ever tried to tms that part of my brain down? I'm game if they are....

Nicole said...

HI John, I saw you on Ingenious Minds this evening...what an awesome discovery this TMS seems to be!! I, too, would like to know if you are familiar with TMS being used on children with ASD? I have a 6 year old with "PDD NOS"--we are in San Francisco, any and all insight would be considered a true gift.
Thank you so much for coming forward and sharing your miracle with all of us who love you "color blind" people and want, with all of our hearts, to share the "vibrant colors" of life with our loved ones.
Nicole Hitchcock

rebn said...

I too live in San Farncisco, with a 4 year old that is at the functional end of ASD/PDD_NOS. Would be very interested in finding out whether this is available in this area for kids
John
email.ricci(at) gmail(dot)come

Mike said...

Hey, I was just reading:

http://www.newscientist.com/article/mg21328524.600-prune-bad-brain-wiring-with-magnetic-pulses.html

and wondered what "state of the art" in TMS for Autism is. I found this post of yours from a couple of years ago, have you continued your interest in TMS? Can you point me at some of the latest research / results?

Thanks,

Chuck Small said...

I was labeled manic depressive in September 1984 after a thrilling but otherwise unfortunate bout amounting to a psychotic break with reality during freshman week at Harvard.

No, after lithium conked out (and tried to kill me), medication roulette, and other fun stuff, my current therapist thinks I'm more asperger than bipolar. I happened upon your memoirs and began reading. Not sure if the shrink's right, but I enjoy your stories.

One of my psychiatrists asked if I had any good bipolar stories. I guess I'm lucky that I do not. Never gambled away a fortune, maxed out my credit cards on things I didn't need, or woke up between two prostitutes in Amsterdam, but it has been rough, especially for my wife.

And genetics, a you know, sucks big time. I was adopted so I didn't know much until I found birth mom a few years ago. She thought her side of my family was "clean" but her brother hung himself last year...

And did i mention genetics suck, both ways, a you also know. My older son is ADD with hints of bipolar while my younger son was PDD-NOS, though very high functioning (unless the world doesn't do as he expects it to), plus a side order of ADHD.

Anyway, I look forward to parsing through your life and works, scrounging for hints of insight...

Kim HT said...

My son received the same treatment as John, administered by Lindsay Oberman and Alexander Rotenberg (peds. neurologist), this spring -- 2013. We believe he is the first child in the U.S. so treated. While the changes are subtle, he can do many things he couldn't before the treatment: join a conversation and stand the 'right' distance, contribute jokes at the right time in the middle of an ongoing conversation, recognize more people and use their names, stutter less, walk next to someone and stay the usual distance, not three feet in front or ten feet behind. But most importantly when he disagrees, which is not all that infrequent at age 15, he can actually take in the other person's point of view and think of something that might meet both our goals. He used to just get stuck and repeat his point of view over and over. He's still himself, with his full human share of quirks, and these changes are subtle, but his teachers from last year have commented that they can see an improvement. I know Lindsay Oberman is still enrolling kids in the clinical study, typically boys between the ages of 8 and 18 with aspergers. Her link is above in John's blog. Seeing John's experience through his before and after videos convinced us to approach the TMS lab and correspond with Lindsay Oberman.

Kurc & Carolyn Buzdegan said...

So interesting to read this posting. I've only recently heard of TMS, in the context that my 25 year old son, who has Down syndrome, also has amblyopia - or "lazy eye". We were made aware of his eye condition at toddler age, but either it wasn't pointed out to us at that time, how uncorrected, this would eventually lead to eventual blindness in this eye. In the last 2 years, he has been diagnosed with a cataract in that eye, has had the surgery and now wears glasses. Still, as it has been in this condition for a number of years, although there is improved vision, unchecked amblyopia leads to the brain not interpreting the signals from the optic nerve - so he does not understand the images that the eye "sees" - hopefully this is an effective explanation of this condition. But a recent study at McGill University [published this last summer] has shown that rTMS [the 'r' stands for repetitive] therapy provides improved vision in adults with amblyopia. The study also refers to this treatment used for patients with Parkinson's disease, depression, migraines and stroke recovery. Hopefully there will be continued research leading to greater availability of this therapy. In the case of my son, we are looking into accessing this procedure.

Napoleon Online said...

Hi John! What a pleasure to hear that the treatment helped you! I wonder which clinic that did the treatment, I myself have autism and would more than love to undergo a TMS treatment!

Paul Herman said...

I would like to know what one of my friends thinks about transcranial magnetic stimulation. He has Asperger's and Type 2 Bipolar Disorder. I would like to find out if he's every had TMS therapy before and what he thinks about it's effectiveness in treating Asperger's and autism.
http://www.lenoxhilltms.com