Thursday, April 17, 2008

Standing on the brink

On more than one occasion, I’ve had people ask me, “If you could take a pill and get rid of your Asperger’s, would you do it?” I’ve always said, “No! I’m proud to be Aspergian and I wouldn’t change it for anything.”

Asperger’s is an essential part of who I am. In fact, its how my brain is wired. My brain’s unusual wiring manifests itself in many ways. I say unexpected things. I have weird mannerisms. I come to surprising conclusions when solving problems. To most people, my mind just works in strange ways. When I was younger, that troubled me to no end.

I always knew I could take pills to change the way I act. But my Aspergian impulses are pretty powerful, so I’d need a powerful pill to hammer them into submission. And I shudder to think of the side effects. I still remember seeing my parents in the state hospital, slowly wandering, mindless, and tranquilized into submission. The orderlies even had a name for it. They called it, “doing the Thorazine shuffle.”

Today’s brain pills may not have such dramatic side effects, but the complaints of sexual dysfunction, dry mouth, weight gain, or insomnia are well documented. Pills go in our mouths, dissolve, and affect the whole body. Pills aren’t intelligent. They can’t pick the one part of the brain that’s troubled and fix it. Body-wide dispersion is okay for fighting infection, or lowering fever. But it’s not okay for a pill that affects the working of the mind, at least, not for me.

But I’ve always wondered, What if there was an alternative to pills? If I could pick a part of my mind and change it and make it better, would I do it?

Until now, such questions were merely fantasies. No more. Right now, neuroscientists are working to make that dream a reality. In fact, one of the leading teams is right near me, at Beth Israel Deaconess Medical Center – a part of Harvard Medical School.

A group of researchers led by Dr. Alvaro Pascual-Leone is using focused magnetic fields to deliver energy to small parts of the brain without surgery. This energy can enhance or inhibit the functioning of specific areas of our brains, allowing treatment of small parts of the brain without affecting the whole. This technique is so precise that regions as small as 1 percent of the brain’s total volume can be treated. The process is called Transcranial Magnetic Stimulation, or TMS.

The TMS energy is delivered by electromagnets held alongside the head. It’s clean, noninvasive and painless. The TMS energy causes the brain to form new connections and pathways. It provides the “push” to make the brain change. The brain changes in subtle ways throughout life, but TMS can accelerate and shape that change in a beneficial way.

I was immediately attracted to and comfortable with the idea of TMS, because it uses processes I knew from my time in electronics. When I worked at Candela Laser, we designed high-energy power supplies that were essentially the same as those used in TMS. And I used powerful electromagnets in both audio and laser work. When I began talking about this, some of my friends said, “Aren’t you scared having those magnets by your head?” I’m not scared, because the systems I used before were far more powerful than these. Admittedly, they were not focused into my head, but we engineers have a long history of co-existing with magnetic fields without ill effect.

In addition to my own experimentation, Dr. Pascual-Leone and others have done extensive research to validate the safety of magnetic therapy. It’s also been extensively researched in the context of MRI machines, which generate even more powerful magnetic fields.

All my life, I have worked hard to train and develop my brain. I’ve had good success teaching my strong parts, like logical reasoning, to take the place of weak parts, like social empathy. That has made my life far better, but it has limits. Now, TMS offers the possibility of removing some of those limits by targeting specific roadblocks within my mind, and enhancing or removing them.

The possibilities of TMS are staggering. Right now, the technology is helping restore brain function in stroke survivors. It’s helping chronically depressed people return to happy lives. A Google search reveals many articles and papers on the successful use of TMS in these areas.

The process has been fine tuned over the past twenty years, and it’s now a mainstream therapy for certain conditions in Europe. Based upon that success, Dr. Pascual-Leone’s team has set their sights on using TMS to help the autistic mind here in Boston.

I have decided to join Dr. Pascual-Leone’s team to assist in conducting and shaping this research. We both hope my Aspergian mind will provide insights to move the work ahead. I’ll be in an unusual position, since I’ll be an experimental subject who is at the same time involved in formulating the experiments. And throughout the process, I’ll be writing and telling the story to the wider world.

And so far, my own results look very promising. TMS did not effect any permanent change in me, but it opened my mind and gave a glimpse of what's inside. Remarkable, to say the least.

The prospect is both exciting and scary. It’s exciting because TMS may help my mind develop new abilities, and it may allow me to accomplish things I could not even have dreamt of before. But it’s scary for the same reason . . . I may change in unexpected and even unwanted ways. What if I don’t like the result?

But it’s irresistible too, because the process of shaping and delivering powerful pulses has always fascinated me. In fact, it was one of the things I specialized in when I worked in electronics. The similarities between the equipment in their lab and devices I’d worked with were immediately obvious to me.

As a child, I read a book called Flowers for Algernon. It’s the story of a team of scientists who find a way to make people smarter. As a test subject, they choose a mildly retarded janitor. And he becomes a genius, but it doesn’t last. After a little while, his intelligence fades before his eyes.

Will I suffer the same fate? I sure hope not, and my logical mind tells me such a possibility is extremely small. As always, I prefer to focus on the opportunities life offers. And I’ve got an ace in the hole . . . TMS is not permanent unless it’s reinforced by repeated treatment. Otherwise, the effects of TMS fade with time. That means we pay close attention to our results, and reinforce the beneficial ones while abandoning those that don’t work out.

All my life, I’ve been blind to social cues, facial expressions, and body language that others read instinctively. I can’t look someone in the eyes and know how they feel. Those parts of my brain just don’t work. You might say, those circuits aren’t hooked up.

What if TMS could help my brain make those connections? What would it mean to me, at age fifty? How could I know? It’s like asking a blind person what it might be like to see. Wiring differences like that create big problems for thousands, even millions, of people. What if we could address those problems without changing the essence of who we are?

What if we could remove the anger from a person who suffers from uncontrollable rages? We can do it today, with heavy tranquilizers. Can you imagine using TMS to do it without medication, leaving the essential person unchanged? Existing tools – heavy medication, electroconvulsive therapy, or lobotomy, are like sledgehammers in the mind. Suddenly, there’s the prospect of tiny tweezers to pick out microscopic slivers instead.

The most exciting possibility is that of extending this therapy to more profoundly autistic people. What if we could offer a non verbal person the power of speech? Today that’s a dream, but it may become a reality through techniques pioneered in the Beth Israel Deaconess labs.

Some people read about TMS and the phrase “a cure for autism” comes to mind. I’m aware such talk generates tremendous controversy. Dr. Pascual-Leone is quick to say TMS does not “cure” autism, but that does not stop the gut reaction many people feel. On the one side, we have parents desperate to “fix” their kids. On the other, we have grownups on the spectrum, who say, “We don't want to be fixed, and we have the right to live our lives in peace.” That’s what I’ve always said too, while faced with existing sledgehammer treatment options. Now, with the possibility of gradual growth and change through a process that’s the mental equivalent of physical therapy, I have to rethink that position.

The idea that I can change and hopefully improve my brain in a gentle, progressive, and reversible way is just fascinating, and irresistible. TMS could offer the ability to make our brains work better. I invite you to accompany me on this journey, as we learn some of the implications of fine-tuning the mind. I look forward to sharing the story of our research as we move ahead.


For additional reading:

The lab’s official site
http://www.tmslab.org/

Old brain, new tricks New research on the blind is revealing the brain's ability to adapt - and may lead to new therapies for everything from strokes to chronic pain
Published in the Boston Globe, January 15, 2006

Zap!
Published in the Boston Globe, January 14, 2003

Magnetic Pulse Seen as Boon for Brain Research
Morning Edition, NPR, January 25, 2007
http://www.npr.org/templates/story/story.php?storyId=7015109

Stroke Treatments
New Scientist, June 22, 2002
http://www.newscientist.com/article.ns?id=dn2423

And here are some videos from the Ted site:

http://www.ted.com/index.php/talks/view/id/184 brain segmentations and control

http://www.ted.com/index.php/talks/view/id/229 a doctor studies her stroke

http://www.ted.com/index.php/talks/view/id/236 brain control

17 comments:

momof3feistykids said...

I applaud your courage in participating in this study! It sounds fascinating and promising, and I look forward to reading more.

Kim Stagliano said...

John, you bring a unique perspective to this debate on "cure" versus "drug yourself away" versus "leave me alone." I always appreciate your respect for the great chasm between "your" autism and the autism of so many others. Your family's history must greatly color your thoughts on the drugs so freely given even to toddlers today. Last week on HuffPo a 32 year old blogger wrote that she's been on meds since age 14 - and has NO idea who she is without them. I find that tragic. Although for many the meds allow them to live and function - I'm not anti-med per se.

I can't wait to learn more about this new, non-invasive treatment for neuro conditions. Anything that could help my girls communicate and thrive is A-OK in my book.

K

John Elder Robison said...

Kim, you commented on the difference between "my" autism and that of others - like your kids - who seem more affected.

I seem to be that rare combination where I have the thought processes yet I am able to describe them. That self-reflection is necessary to fine tune approaches like TMS. There's no question that they hope to extend this sort of study to a wider and wider group within the autism spectrum, based upon what's learned in the current studies.

Drama Mama said...

Wow, John. Kudos to you for participating.

Waiting to see how all of this unfolds.

Melanie Avila said...

Wow, this sounds really amazing. Good luck, John. You seem to know what you're getting involved with and have really researched what to expect.

I look forward to reading more about your experiences.

The Anti-Wife said...

John, I'm so proud of you for participating in this study. You can and will make a difference in the lives of many people.

Kanani said...

There are a lot of what if's that are worth knowing about, and hopefully they all lead to an understanding of brain function, and effective treatments.

Though you might not want to change anything, keep in mind that there are people with Unipolar and Bipolar depression, Obsessive Compulsive Disorder, Schizophrenia and any number of things that people do want to change. In addition, I'd ask you to remember that many people who are diagnosed with high functioning autism also have depressive and anxious tendencies that can be greatly alleviated with a combination of both therapy and medication.

While we all await what's being researched and developed for the future, it does not preclude using the medications and tools we have now.

Holly Kennedy said...

John, I think your participation in this is fantastic :)

I agree with Kim, there are those who do require meds to function & live normal lives, but I think there are many others who are overly medicated, often unnecessarily so.

ChristineEldin said...

This is an amazing post. Your description of your parents' reaction to certain drugs is chilling.
But what you are doing is wonderful and noble. You're going to help many people, not just those with autism. THe applications of this science are far and wide.

Katie Alender said...

John, it sounds fascinating. My first thought on the question of whether the effects will fade is that someone with your analytical abilities will probably be paying attention to the information behind much of what changes in your perception--not just perceiving the changes and taking them at face value, but teaching yourself new cues and gathering information that (should the effects be diminished) would still be with you as evidence that you could still consider.

Does that make sense? I'm having a hard time articulating it.

Karina said...

John, this is fascinating stuff.

You are very brave- this will be a true adventure, an exploration into unknown territory. I'm glad you'll be taking notes. [smile]

Lisa said...

This is incredible. You are about to make history and we will be able to go along on the journey with you. I hope these experiences will form the basis for your next book.

You are a brave man and I am proud to "know" you.

Polly Kahl said...

Very interesting, John. I think Kanani brings up some good points about not everyone wanting to change, and many people benefit to their satisfaction with current medications. I also worry about the Big Brother potential with tools such as this. It's all very cutting edge, exciting and science-fictiony. Congrats for being part of such important work.

Jill Elaine Hughes said...

John, this sounds like a fascinating opportunity. And as someone who grew up in a family ravaged by psychoactive drugs, I am always excited about any potential treatment that is reversible, non-addictive, and does not involve the sledgehammer chokehold of toxic pharmaceuticals and the mostly amoral companies that manufacture them. Do keep us posted on how this study progresses. I hope the US follows Europe's and other countries' example and learns that there are other, better ways to treat psychological issues than heavy drugs.

And I also sympathize with your belief that many people who society has labeled "ill" do not want to be "cured", nor do they need to be.

Sixdegrees said...

The TMS is very interesting, with a great deal of potential. I am particularly interested in the possibility of gaining the ability to "see" social cues that are currently invisible.

Like you say, this is like operations that result in eyesight to some one who is blind or hearing to some one who is deaf. The conscious brain suddenly receives a flood of information which it is unable to interpret. Because the neuronal wiring that interprets a particular wavelength of light as the color "red" has never developed.

How will the brain/mind respond when presented with new information about non-verbal information that it had previously been unaware of? We don't know, but this is a very important question and worthy of investigation.

Sminthia said...

I think a lot about FLOWERS FOR ALGERNON when I think about my Aspergian son. He has his good and bad days (weeks, months). Sometimes he's really connected, and sometimes it's so hard for him. Just as Charlie grieves when he knows what he had and feels it slipping away, it breaks my heart to see him struggle when I've seen his potential.

Happily, the good days are now outnumbering the bad. His bad days make me appreciate his good ones all the more. As Arlo Guthrie said, "You can't have a light without a dark to stick it in."

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