TMS and Autism
Transcranial Magnetic Stimulation
The essay below was originally posted here in early 2010. In the spring of 2016, my book SWITCHED ON told the fuller story of my life-changing experiences with TMS.
Here is the original essay:
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.
The essay below was originally posted here in early 2010. In the spring of 2016, my book SWITCHED ON told the fuller story of my life-changing experiences with TMS.
Here is the original essay:
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/
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.
(2016 Note) I'm aware that not every autistic person shares my sense of social disability. Many do; others don't. If you don't feel disconnected from the wider world you probably have no interest in seeing a therapy like this developed. (end note)
(2016 Note) I'm aware that not every autistic person shares my sense of social disability. Many do; others don't. If you don't feel disconnected from the wider world you probably have no interest in seeing a therapy like this developed. (end note)
TMS temporarily 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
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?
(2016 note) Since my 2010 note Lindsay and Alvaro have both published on TMS and plasticity. Plasticity does seem to be a biomarker for autism, and the plasticity studies suggest that emotional triggers may affect autistic people more deeply, and for longer periods of time, than non-autistics. Alvaro and Lindsay are both continuing this research, at Harvard/Beth Israel and at Brown. (end note)
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 . . .
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
The photo below shows me, Beth Israel development VP Kris Laping, and Dr. Alvaro Pascual Leone in his office at Beth Israel Deaconess Medical Center in 2009.
Some of you who have read Look Me in the Eye 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 . . .
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 "cure." None of the scientists talk of TMS as a cure for autism. 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.
John Elder Robison
(2016 note) At this time TMS is still in the study phase to treat deficits of autism. It's also under study for anxiety, addiction, epilepsy, and other formerly intractable psychiatric conditions. TMS is currently approved to treat drug resistant depression in the USA, and depression in general elsewhere in the world.
Comments
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....
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).
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@hotmail.com
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
John
email.ricci(at) gmail(dot)come
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,
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...
http://www.lenoxhilltms.com
I want to roll this back a bit. Starting a garage is a huge undertaking. Who helped you with the nuts and bolts of starting the business, and then establishing the operating protocols? Did you have that yourself, or were you able to ask for help? I'm guessing that with your previous work, it was easier to relate with others as long as it was task oriented around work.
I think a lot of people on the spectrum who excel at their work are probably just like that, and work is a very very important thing because not only for the sense of accomplishment, the ability to support oneself, but the social opportunities it affords.
As for TMS --pros and cons, and no doubt a varying degree of success with each individual. I will be interested to see how this is integrated into the mainstream society. If it will be something that only those with the financial resources will be able to afford, or if it will become one of many options available for treatment. Also, I think what's important is that one doesn't embark upon any change without the ancillary support services that are needed for not only the person on the spectrum, but for the family too.
As always, keep up the good work, John, stay the course on the journey.
Hal keneau
I heard a recent interview with you on NPR, and I bought a copy of your book Switched On. I'm reading it now. Thank you for writing the book and getting the information out there about TMS. I've passed a copy to my son's psychiatrist. My son has autism. I hope some day he can benefit from TMS. Thanks again!