Littsburgh is thrilled to be able to share with you this excerpt from Switched On: A Memoir of Brain Change and Emotional Awakening by John Elder Robison, the New York Times bestselling author of Look Me in the Eye (and, as noted in the excerpt below, Augusten Burroughs’ brother!).
Robison will be visiting Pittsburgh Arts and Lectures on March 23rd – be sure to catch him while he’s in town!
“A fascinating companion to the previous memoirs by this masterful storyteller.”—Kirkus Reviews
“A mind-blowing book that will force you to ask deep questions about what is important in life. Would normalizing the brains of those who think differently reduce their motivation for great achievement?”—Temple Grandin, author of The Autistic Brain
My adventure had started rather inauspiciously a few months earlier. I was standing by a table covered with cookies, at the entrance to the auditorium at the Elms College library in Chicopee, Massachusetts. The cookies were just standard school cafeteria fare, but someone had to eat them, so there I was.
I’d been invited to Elms to talk to students, faculty, and anyone else who might wander in on a cold January night. Elms had billed the evening’s program as an “autism workshop,” and I was its ostensible leader. That in itself was an extraordinary thing—me leading a college workshop. Until quite recently, the only workshop I’d ever run was the one at Robison Service, where we restored Mercedes, Jaguars, and Land Rovers. I wasn’t a college professor—I hadn’t even gone to college. I’d begun as a self-taught engineer who created sound and light effects for rock and roll shows. Twenty years ago I’d left that world behind and started a small business. Now I was a car mechanic with a side interest in freelance photography. However, I’d just written a book about living with Asperger’s syndrome. (That was what clinicians called the type of autism I’d been diagnosed with. Today they call all forms of autism the “autism spectrum.”)
I was already getting invitations to come talk about it in some pretty surprising places.
I’d grown up knowing I was different but having no idea why. The less obvious forms of autism—like Asperger’s syndrome—were not widely recognized until the 1990s, and I wasn’t diagnosed until age forty, in 1997. My discovery of how and why I was different was so empowering and liberating that I felt compelled to share the story with the world. The guys at the car shop thought I was crazy to take time off to write a book, but my brother, Augusten Burroughs, had written his own story, Running with Scissors, a few years before and I’d felt sure I could do it. Now my book was a reality, and its publication had connected me to more people than I’d ever imagined, all fascinated by autism.
First were the adults I’d met through my local autism society, a part of the Asperger’s Association of New England (now called the Asperger/ Autism Network, or AANE). They’d been great—a welcoming and supportive community that gathered twice a month to talk about the tribulations of everyday life. I was surprised by the extent to which autism tied us together, different as we seemed as individuals. And wherever I spoke I also met parents, many of whom seemed to take encouragement from the fact that I’d matured into an independent and self-supporting adult. Their reaction to my success made me think I’d dodged a bullet, living in ignorance of my diagnosis for so long. When I was growing up, I never for a moment doubted that I would be able to make a living. What other choice was there? Starvation? Yet many of the parents I was meeting seemed to doubt that their kids could do much more than get dressed in the morning and play videogames.
Their low level of expectation was shocking to me, and I began to wonder if it was an unintended downside to the new diagnostic awareness. Maybe today’s autistic kids were like wise and wily pets who had trained their parents to feed them, house them, and provide entertainment and healthcare for a lifetime, all for free. When I offered this insight to a few of the mothers they did not find it amusing or enlightening.
I had done some speaking about autism before Look Me in the Eye was published—for schoolkids and even in jails—and I initially thought of the book as an extension of my in-person storytelling. After it was published I expected to reach a wider audience, but I never imagined the sort of response I encountered. I’d never gotten so many emails, calls, and messages, all from people with a stake in autism. I’d imagined creating a book as a cerebral, literary process, but no one seemed to be interested in the technical or creative aspects of my writing. It was all about autism. Everywhere I went, readers questioned me about the ideas I expressed and the things I believed. One of the first to make contact was Jim Mullen, then the president of Elms College. He’d gotten a prepublication copy, read it, and invited me to tour their campus and their new autism program. Jim introduced me to the faculty and asked if I wanted to get involved. They were developing a graduate program in autism therapy, and I was flattered to think that my ideas might make a useful addition to their curriculum. And I imagined it might be fun to surprise the faculty members who brought their Subarus and Volvos to my car complex for service. I’d always joked with them, saying, “You never know what a car mechanic will do next!”
That was my answer whenever a client of my car company encountered me moonlighting as a photographer on the edge of a concert stage, up on an acrobat’s high wire, or in the circus ring with a lion. With my photographer’s vest, ID lanyard, and three big cameras hanging off my shoulders, I sure looked different from the way I appeared in our service department. And being six foot four, I guess I’m a hard guy to miss. The funny thing was, I was perfectly in my element among performers and musicians, and they would have thought it just as strange to see me in the shop at Robison Service, surrounded by broken Jaguars and BMWs. Now publishing a book had led me to a new place—one where no one from my past would have expected to find me. The night of the workshop at Elms College, I’d had just four months to adapt to my new role as “autism expert.”
Nowhere in my book had I claimed to be knowledgeable about anything but cars, electronics, and my own life. Nonetheless, readers said my lived autism insights made me an expert on that, and I was doing my best to meet their expectations.
The only worry that would sometimes creep into my mind was that I wasn’t an accredited autism professional. My expertise was limited to my own experience of growing up different. The prospect of giving wrong advice by example worried me a lot, so I resolved to learn as much as I could about autism. I couldn’t change the way people saw me, but I could change my foundation of knowledge, and I set out to do that as quickly as possible.
I never knew who would be in the audience at my talks. Some of the folks who came to hear me speak were established autism clinicians and therapists. I met teachers, counselors, psychologists, psychiatrists, and physicians. They often expressed fascination with my stories, and I wondered how to interpret that. Did they identify with my experiences? Or were they thinking something like, This lab specimen can talk! There was probably a bit of both.
Whenever a professional approached me, I listened very intently because I never knew when I might learn something vital. The problem was distinguishing genuine experts from trolls, opinionated laypeople, and the occasional crank. When Lindsay Oberman walked up to me that night at Elms College, I didn’t know who she was or where she fit into the puzzle. She seemed the right age to be attending the school, and that’s what I first assumed. She looked like a typical grad student—young, enthusiastic, and conservatively dressed in jeans and a sweater. Some of the people at the Elms event wore fancy jewelry or sported exotic tattoos or piercings, but Lindsay’s only adornment was a handbag and a book.
Despite the simplicity of her appearance, she managed to stand out. Even now, I can’t say what it was about her that made such an impression on me. Maybe someone who reads people better than I do could answer that, but it was enough for me that I sensed she was smart and different.
“I’m a postdoctoral researcher from Beth Israel Hospital,” she said as she introduced herself with a business card that read “Dr. Lindsay Oberman, Ph.D.” “We’re doing some autism studies and I’m hoping you’ll let me leave some flyers about our research. We need adult volunteers for a project we’re starting in the area of improving emotional intelligence for people with autism.”
Now that was a new one.
I pictured the audience for my talk as fish in a pond, and Lindsay on the bank with a fishing pole and a net, scooping the ones she could catch into a bucket and carrying them away to some unknown fate. I wondered what she intended to do with these adult volunteers, imagining psychological tests followed by stew pots for the losers.
That unsettling vision left me unsure how to respond. Was she asking me to endorse her research and encourage people to volunteer? I didn’t even know what her study was about. So I asked her.
She began to describe her interest in autism and her desire to remediate some of its disabling symptoms. “We’re experimenting with a new technique called TMS, which stands for transcranial magnetic stimulation. We use an electromagnetic field to induce signals in the outer layer of the brain. We’re hoping to develop a therapy that helps autistic people read emotion in other people.”
That last line got my attention. I almost said, “That’s exactly my problem,” but I kept my mouth shut. My grandfather had taught me never to show interest in something that was offered for sale. It only makes the price go up. Even though she hadn’t said a word about money yet, for all I knew, she was going to end her presentation with the news that I could sign up—today only—for a special introductory price of $1,999.
But she didn’t mention money at all. Instead, she launched into a five- minute explanation of mirror neurons, electromagnets, and pulse energy. I wasn’t sure if Lindsay had read my book or knew about my background as an electrical engineer. What she described sounded very similar to the lasers and sound systems I’d worked with eighteen years earlier. The difference was, our electromagnets were part of loudspeaker arrays that filled arenas with sound, and our pulse lasers scattered pinpoints of light over crowded dance floors or bounced signals off the moon.
She proposed using similar technologies on people, by pulsing electromagnets to fire microscopic shots of energy into the brain. I’d never considered such a possibility, but I was intrigued.
And the mirror neuron thing was fascinating too. I’d recently read up on mirror neurons—brain cells that cause us to act out what we see or hear. We see our mother smile at us, and our mirror neurons make us smile in response, sort of a monkey see, monkey do effect (literally so, because it was first observed in monkeys).
The idea of stimulating mirror neurons with electricity sounded more than cool to a techno geek like me. I had a brief vision of Frankenstein’s monster with lightning sizzling between his ears, but I understood that this would be something far subtler. Years ago, we’d fired thousands of watts into lasers and loudspeakers, but the brain operated at power levels a million times smaller. Delivering tiny pulses of energy to alter the process of thought sounded like a fascinating challenge. I’d have jumped at the chance to design their equipment if I still worked as an engineer.
Lindsay had captured my attention right away with her talk of medical magnets. Maybe it was the use of familiar technologies in a completely unexpected way, or perhaps it was the hope of unraveling my social disability through applied electrical engineering—either way I was hooked just as surely as a guy in the funnies who sees a pretty girl and gets hit by a thunderbolt.
Was it possible to use energy to change the brain? It sounded like science fiction. “It’s definitely science fact,” Lindsay assured me. “When TMS adds electromagnetic energy to the neural networks inside your head, it helps them build new connections, and it reinforces the connections we want to strengthen.
“I’ve worked with it in the lab,” she told me, “and I’ve even had it done to me, so I know it’s safe.” Until she said that I hadn’t even stopped to consider whether jolting the brain with energy might be dangerous.
I fired questions at her as fast as I could think them up, and she was eager to answer, tossing out terms like “cerebral cortex” and “brain plas- ticity.” But when I asked about power levels, polarity, and patterns of elec- trical waves, I discovered that her knowledge of the physics of TMS was limited. Lindsay was a user of electromagnetic technology, not a maker of it. Her training was in neuroscience as opposed to electronic circuit design. She was quite fluent in the language of the brain, but from my perspective, as a newcomer to neuroscience, hearing which cerebral areas she might stimulate didn’t mean much because I didn’t know one from the other. And Lindsay wasn’t familiar with any of my electronic engineering terms; all she could tell me was that different patterns produced different effects. I asked what the effects were and she mentioned two terms—“potentiation” and “depression.” When I asked what those terms meant she explained that they referred to energizing or turning down particular areas. “If we depress your speech center, you’ll have a hard time talking,” she offered as a quick illustration.
When I asked her exactly how that happened, she couldn’t answer me. I wasn’t sure if she didn’t know herself or if the answer was unknown to science. Either way, I wanted to learn more.
“My boss can explain how it works better than I can,” she said. She wrote down his name, Dr. Alvaro Pascual-Leone, on the back of her business card and invited me to meet him the following week.
The idea of using pulsed magnets to change the brain was fascinating to me for another reason as well. My family had a history of mental illness, and I’d always hoped for some kind of breakthrough. My mother had experienced semiannual psychotic breaks throughout most of my teen and adult life—I’d seen her sent to the state hospital and tranquilized into a zombie-like stupor—until her brain was reconfigured by a stroke when I was thirty-three. Her doctor made a remarkable observation two years later, when she was in a rehab hospital, paralyzed on one side and having lost much of her speech. “The stroke seems to have killed the part of your mom’s brain that made her become psychotic. As hard as this is for all of you, that is an unexpected silver lining.”
To make matters worse, one of her brothers was schizophrenic, and her father suffered all his life from serious depression. Given my family history, I always wondered when the other shoe was going to drop for me. Was there a way to fix the broken things inside our heads while leaving the remainder untouched? Could we alter speech, coordination, or vision while leaving personality intact? Might we even adjust personality?
Lindsay’s description of TMS hinted at an answer. But she didn’t promise any benefit at all, particularly for me. “This is a research study,” she told me. “It’s not a treatment trial. That would come later, if we find something that seems to work.” But even without any guarantees, I was ready to sign up. I’d had a lifetime of feeling I was less than everyone else. After fifty years I’d come to accept my lot in life, but now that I saw a chance to leave second-class citizenship behind I was going to grab it.
Then I had a crazy thought: What if her boss was an engineer? Nothing could be finer! We would solve the problems of autism as fellow engineers and use medical magnets to create autistic supermen! We’d win fame and glory! Alas, my hopes were immediately dashed. “He’s a neuroscientist,” she told me.
When I first started giving talks about autism, I had encountered some unusual theories about my condition. “Don’t you realize that your autism is caused by mercury poisoning?” I was asked more than once. One determined mom insisted that dangerous chelation therapy was the key to a healthy, autism-free life, just as surely as Brother Love’s Traveling Salvation Show offered the road to redemption. Another well-meaning parent professed the wonders of hyperbaric chambers. If chelation didn’t fix me, that surely would. Prior to meeting these parents, I’d never thought of myself as being in need of a cure. The idea that my autism was a disease or a vaccine byproduct had always felt somewhat insulting. I did not know why I was different, but I knew in my bones that I was not the twisted spawn of some pharma-government vaccine conspiracy. Nor was I a different kind of human, escaped from the Alien Containment Unit in Area 51. To my great relief, Lindsay didn’t suggest any of those things. She didn’t suggest much at all about how I came to be autistic. She just proposed a possible way to help my brain rewire itself to work a little better. With the good bit I knew about electromagnetics and the nothing I knew about brain science, that put her suggestion a thousand miles ahead of anything I had heard before.
And when she was done—after my earlier worries about cost—Lindsay told me I’d receive the princely sum of fifty dollars for every session. What a deal!
TMS was the first therapy I’d heard about that made sense to my engineer mind. The idea that electromagnetic coupling could deliver controlled energy to small parts of the brain appealed to me because I knew it was possible and I had always been dubious of psychiatric drugs. How many billions of unaffected cells did they touch and change? To me, taking a psychiatric drug was like pouring oil all over a car when the low oil warning light came on. Doing that might get some oil into the engine, but it mostly just makes a mess. Drugs in the bloodstream work the same way, diffusing through the whole body. TMS, on the other hand, targets a tiny focused area. It didn’t take a medical degree to appreciate that difference.
Later that night I looked up Lindsay and her boss online. That was when I learned that Beth Israel is a teaching hospital of Harvard Medical School, and that Pascual-Leone, MD, PhD, was both a medical doctor and a neuroscientist, a full professor at those august institutions. Lindsay had introduced herself by her first name, but reading about her I now wondered if I should have called her Dr. Oberman and whether I’d addressed her with enough respect back at the auditorium. She’d hardly looked older than my son, Cubby, who was just out of high school. But there she was on the website, with a doctorate from the University of California, San Diego, and a faculty appointment at one of the most prestigious universities in the world. I reminded myself that I was not a great judge of age and that appearances could be deceptive.
Lindsay had told me she had done her doctoral work with V. S. Ramachandran. As it happened, I’d just finished reading about Rama and his groundbreaking work with phantom limbs in a book called The Brain That Changes Itself, by Dr. Norman Doidge. Lindsay’s former professor was a legend in the field of cognitive neuroscience, and I was duly impressed.
Rama had a fascination with autism too, and Lindsay had said she discovered her own interest while studying in his lab. When I considered her lack of electrical engineering knowledge, I reminded myself that you don’t have to know how the hardware in a computer works to be a star programmer. The next time I saw her, I made a point to ask her what she thought of the comparison. “I’m not sure anyone in the field truly knows how brain circuits work,” she said, “at least not at the level of a computer chip.” I would soon discover how incredibly complex the brain is, orders of magnitude more intricate than any circuit.
Yet I couldn’t help trying to relate what she had said to my own experience with electronics. When I worked as an engineer in rock and roll, I created custom instruments but I never learned how to play them except in the most rudimentary way. The fact that I could create a custom guitar without much musical knowledge and then a musician could pick it up and make beautiful melodies with no idea how it worked inside had always fascinated me. Perhaps Lindsay was like a musician of the mind.
That reflection led me to an unsettling thought: if she was the musician and I signed up for her study, that would make me the instrument! I remembered all those nights at concerts watching rock and rollers hammer their guitars till the strings came off, and I hoped that wasn’t what was in store for me. When a musician gets a hit record, his guitar doesn’t generally jump for joy.
Still, the conversation had gotten my hopes up. TMS sounded like a doorway to a fascinating new world, one I very much wanted to enter. I just hoped my natural rudeness hadn’t chased Lindsay away.
Excerpted from SWITCHED ON: A MEMOIR OF BRAIN CHANGES AND EMOTIONAL AWAKENING by John Elder Robison. Copyright © 2016 by John Elder Robison. Excerpted by permission of Spiegel & Grau, a division of Random House, Inc. All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.
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