Switched On

by John Elder Robison

  I’d read a lot of science fiction, and I’d always been amazed by how prescient some of my favourite writers could be. Now I found myself playing a role in one of the stories, and I was chilled by the notion that it might predict my future. The parallels became more and more apparent as the study and its aftermath unfolded.

  Before TMS I was a car mechanic in a small New England town. After TMS I emerged on an international stage, sought out for my thoughts on autism and neurodiversity. It felt like I’d learned more about autism and brain science in the last few months than I had learned about other things over the past fifty years. And I was soaking up new knowledge as fast as I could gather it, by reading books and articles and absorbing every bit of wisdom I could from the doctors and scientists around me. Some would say my first book had precipitated these changes, and indeed its publication opened many doors. But I believe the insights I gained from TMS—and some new abilities—were what allowed me to walk through the doors and seize the opportunities.

  Friends and even acquaintances had started to say I seemed different, though they weren’t sure exactly how. They’d said that to Charlie too, when he’d started to change. But how long would it last? If Flowers for Algernon was any guide, it was time to start worrying. I’d seen TMS turn on latent abilities in me, only to watch them fade away hours or days later. I was never sure what essence remained, or what had been lost, and I wondered if I would end up like Charlie.

  There were moments when I felt I’d gained so much . . . and that convinced me there had to be a price to pay. There were times I’d wish that I’d never started this TMS, because I’d been functional the way I was, even if my sense of other people was weak. Before I began, it had never occurred to me that I could lose what sensitivity I’d started with. Thinking of Flowers for Algernon had me worried that TMS was like a poker game, and that these brain experiments could end up cleaning me out.

  That thought became harder to ignore as some of my newfound powers slipped away just as I was getting to know them. When I learned I was autistic, in the late 1990s, the therapist who’d first told me said, “You were born this way,” and indeed I’d never known anything else. Nor had I ever questioned it. I’d always made the best of things, and after learning my diagnosis I taught myself how to act in the ways others expected, in order to fit into social settings. It didn’t always go smoothly, but it helped me find some stability and some professional success. But inside, I was the same as I’d always been—or so I thought. It was Alvaro and the other scientists who showed me how limited that viewpoint was.

  Psychiatrists, psychologists, and neurologists have evaluated me on several occasions since that first diagnosis. Each time, before they began, I’d feel that old fear of being exposed as a fraud. You might be surprised I’d feel that way about something that was called a disability diagnosis. But it was true. After a lifetime of feeling defective, it was far better to learn that I was a typical autistic person and not a defective human. The prospect that the diagnosis was wrong always scared me, because that would mean I was just defective. It didn’t matter how much money or success I attained—that worry never left me.

  It was the same feeling I’d get in grade school, when the answer to a math problem popped into my head and my teacher said it didn’t count because I couldn’t show my work. Or much later, when I lied about my credentials to gain employment as an engineer. But every time, the diagnosis remained the same. I start every evaluation fearful that I won’t measure up to some imaginary standard, and then I’m disappointed that I’m not instantly better, even though I’ve always been told that autism will never leave me. Yet Alvaro, Lindsay, and their team gave me hope. “Our brains are changing all the time, rewiring themselves through the process we call plasticity,” Alvaro said. “You practise math and get better at it, right? So it should make sense that you’d practise social interactions and get better at them too. Both involve fine-tuning the brain to do things more efficiently.”

  “We think TMS may help and accelerate this fine-tuning process,” Lindsay said.

  There was a time when I would have preferred to do my fine-tuning in private, but that moment was long past. Sharing my stories with the world in Look Me in the Eye showed me how much interest there was in autism and in emerging from disability. Consequently, I felt a sense of duty to my readers to keep writing about my journey. That first night at dinner with Alvaro and Lindsay, I’d become so excited about the possibilities of TMS that I’d asked them whether it was okay to share the news on my blog. “Sure,” Lindsay told me. “Describe what we are doing and let’s see if anyone volunteers for the study.” Lindsay pointed me to the description she’d put on a flyer. “We have to be careful what we say,” she explained, “because the hospital’s review board keeps a close eye on what we tell potential research subjects. It’s important not to mislead research subjects or promise things we can’t deliver.”

  When I originally posted my description I did my best to make the limited goals of the study clear, but a surprising number of readers still took my words to mean that TMS was a ready-to-go therapy for autism, even though I expressly said it wasn’t. When I looked at the traffic statistics for my blog a few days after that first post, I was shocked to discover the story had been downloaded several thousand times. Beyond that, Lindsay was swamped with a hundred-plus phone calls and messages to answer. When the scientists had first reached out to me they were having a hard time finding adults with autism for their study. But after I’d written a few blog essays on TMS, volunteers were coming out of the woodwork.

  “We’ve had four new people join the study this week,” Lindsay told me excitedly, and the project had barely begun. The realization that I’d played a small part in that made me proud. As people continued to sign up I just hoped I’d made a good choice by talking publicly about the research and that the people who followed me into the depths of TMS would be helped and not harmed by the experience.

  That had sounded great when I’d acquired new insights at every visit to the lab, but what was I supposed to say when the gifts I celebrated slipped quietly away? Alvaro and Lindsay both reassured me on that score. “First of all,” Lindsay told me, “there is no reason to think you will lose the intellect you had before TMS just because you can’t look deeply into someone’s eyes anymore. We told you at the outset that any gains from the study would be temporary. What you have described is still remarkable, wherever it goes from here.”

  Perhaps my own sense of inferiority—which I attributed to my autism—had made me overexuberant when I initially described its potential. After all, I wasn’t a neurologist. “It’s great to get volunteers,” Lindsay had said, “but I’m worried that callers are expecting too much. They are looking for treatment, and this isn’t a treatment study. This is just basic research. Quite a few of the people who call me don’t understand that.”

  Her words told me that there were a lot of people out there like me who have muddled along with some level of disability but were ready to jump at a fix the moment it was available. Then there were the mothers who called Lindsay looking for help for their children. Hearing about them made me sad, because I knew how lonely I had been as a kid, but I also realized that autism had contributed to my success in other areas as an adult. Any mother looking at me as a boy would have been in a desperate panic for sure.

  “Being lonely as a kid might well have been necessary for me,” I told audiences in my talks. “If I’d had the friends I dreamt of, I’d never have spent the time to become the machine aficionado I am today. Now that I’m grown I can put that in perspective. The world is full of friendly people with no technical skills. The few of us who see into machines like others see into humans are singularly uncommon, and we’re valued for that. If we use a technology like TMS to help a lonely teen today, will we be taking that exceptional ability away from him tomorrow? Should we trade friends in seventh grade for designing a working spaceship at age twenty-five?”

  Those were hypo
thetical questions in 2008, but I believed they would be real issues soon, and I wanted to start a dialogue. Unfortunately, many of the parents who called Lindsay weren’t interested in talk. They wanted a fix, and they wanted it now. Neither of us knew how to respond, except to tell them this was basic science and not the miracle cure they were hoping for.

  The thing I never revealed was that I had as much hope as the most enthusiastic of her callers. Attitude means a great deal when you are sick; studies have shown that patients who believe they are getting better recover at higher rates than those who give in to their illnesses. Autism isn’t a sickness, but I hoped the analogy would hold and my positive outlook would translate into real success. In those moments when I questioned myself, it was encouraging to recall that I’d been in a similar position thirty years earlier when I told the guys in KISS that I could definitely make a guitar blow fire. “No problem,” I assured them, even though I’d never done anything remotely like that before. With my foolish promise and their blind faith and hope, we made it work, and every guitar I did for them was a success.

  Yet my online postings about the programme also drew lots of questions and a wide range of commentary. Many readers were dubious, sceptical, or both.

  One of the hardest questions to answer was “Why are you doing this?” After writing about all that I’d done to make a good life, people found it hard to understand why I would be so quick to embrace change. That was tough, because I didn’t really understand it myself.

  Then there were the technical questions: What area are they stimulating? What protocols are they using? It was intimidating, and I resolved to acquire the knowledge I needed to get it right. I had succeeded till now with this method, often starting with nothing. After all, by the time that series of smoking, burning, and illuminated musical instruments for KISS was done, I was surely the top expert anywhere on the construction of fire-breathing guitars, even though I had started from nothing. Who else was even dreaming about such a thing in the 1970s?

  This situation seemed simpler, at first. All I had to do was learn how to explain the TMS process. Unfortunately, explaining TMS turned out to be like peeling an onion. Each layer of explanation revealed another question, and I soon found myself at the limits of medical knowledge.

  Whenever I thought I was ready, I wasn’t. The questions came pouring in, and though I’ve sometimes said that I learn by explaining, when I started explaining TMS I realized that my knowledge of electricity, engineering, and physics was not enough. The simplest of questions proved devilishly complex.

  What does it do?

  How do you know it’s safe?

  Or take the most basic question: How does it work?

  The answer begins with the transference of electromagnetic energy from the TMS coil into the microscopic threads inside the brain. But as I write that sentence I can already see the questions forming. Why? How does it do that? What are threads of the brain? My first answer was enough for some people, but others wanted to know more. Including me. The only solution was to follow the energy down the TMS rabbit hole in the hope of emerging with more solid knowledge. As I kept learning, I kept writing, and the questions kept coming.

  What does the energy do when it gets into the neurons?

  To answer that I turned first to the neuroscience texts Alvaro had recommended, and when I wasn’t fully satisfied, I turned to the maestro himself. I’d come to believe he could answer anything, and I was somewhat startled to find that his knowledge had limits too. Still, between his insight, the discussions with his postdocs, and a lot of reading I began piecing things together. The further I ventured into the brain cells, the more complex things got.

  The brain makes its electricity by breaking down enzymes that are delivered by the bloodstream along with oxygen and other essential elements. That electricity forms signals that get passed from neuron to neuron, just as electricity in a computer passes from one component to another. With a computer, you press a key and a signal is sent to the processor, which sends signals to a printer, where a document appears in the print tray. In a brain the eye sees some bacon, and the nose confirms the odour. The brain sends a signal to the arm, which grabs the morsel and puts it in the mouth. What do those things have in common? Both are sequences controlled by tiny electrical signals. How might additional energy affect those processes?

  At first glance, it seemed like TMS would scramble the circuits. “That may explain what’s happening,” Alvaro confirmed when I asked him. “TMS might be like a reset button for the part of the mind where it’s aimed.” But then he continued to explain that TMS could be “turning things up,” just as jacking up the power in a stereo makes the whole thing get louder. Another possibility is that TMS is changing the network in our heads by temporarily rearranging the wiring. The plan being followed in Alvaro’s lab was essentially: pick some possible targets, stimulate them, and see what happens.

  As I learned more, I began to see that much of research medicine operates this way. Until quite recently, we had no idea how drugs worked. We discovered them by chance and experiment and used what worked. Penicillin is a good example—it was discovered in a lab culture in 1928 and immediately put into use. Its chemical structure wasn’t unravelled until sixteen years later, and it would be decades before we’d truly understand what made it work.

  We appear to be in a similar place with TMS—we know it’s got power, and it has certain effects, but we’re far from fully grasping the fine subtleties of its operation. But that doesn’t mean we can’t use it to great benefit as we unravel the science behind it. This learning stage was a humbling experience for me. To think I’d imagined that I might have an advantage over the doctors with my grasp of physics and engineering! Now I saw that the little I knew only took me deeper into a maze where there were no certain answers.

  As I immersed myself in neuroscience tomes, more and more people were reading my book and blog, and I found myself answering fresh emails every morning. Some readers even called me on the phone. It always surprised me when the phone rang and it was an autism caller, as opposed to someone with a broken Mercedes or Land Rover.

  I had intended to write about the promise of science and how an exciting new tool could potentially help autistic people. When readers called me, though, they were not thinking research. They were thinking treatment, and where they could get it. I found myself in a strange situation—I was a car mechanic explaining cutting-edge neuroscience to strangers who listened to my words as if I were some kind of expert. The best I could do was to describe the engineering principles and leave the brain part to the doctors. I referred a lot of callers to Lindsay at the lab and studied as hard as I could.

  There were also a few calls from parents looking to apprentice their kids at my repair shop, Robison Service, in the hope that they’d learn the automobile trade. While that sounded great in theory, there was really no practical way to do it, though I wished we could. The idea of a roomful of autistic apprentices slaving away appealed to the capitalist in me, but it would have been an overwhelming task to train and supervise them all. Yet four years later, we finally did make use of those willing apprentices. A psychologist with a broken Jaguar introduced me to the folks at Tri-County Schools, a local programme that serves public school students with developmental challenges. They were looking for ways to teach their students real-world skills so they could be self-supporting on graduation, and in the summer of 2013 we joined forces with Tri-County and opened a special-ed high school programme in the Robison Service car complex. As I write this book we are in our second year of operation, doing exactly what those early callers hoped for. High school seniors learn real-life skills in our programme, and they get to work as paid apprentices, overseen by the school’s teaching staff. We’re even using some of the neuroscience insight I gained these past few years to teach them. Our school psychologist uses brain-wave monitors and neurofeedback to help students learn to regulate their behaviours, and we are testing self-regulation techniques
developed in Dr. Minshew’s lab. So far, it’s all working. The idea that I’d do something like that would have been inconceivable to me before TMS.

  As I cast my autism writing out into the world, calls also came in from other scientists and researchers. In the summer of 2008 I began getting calls from nonprofits who wanted my input on autism research directions. They invited me to work with them, to select promising autism research for funding. Then I got a call from the Office of Autism Research Coordination at the National Institutes of Health. “We’re conducting a review of proposed autism research,” the woman on the line told me, “and we wonder if you’d be willing to help us out.” My first thought was Why me? I’m not a doctor, and I have no experience evaluating research. Yet the caller ID said she was from the government, so I listened to her closely.

  “We want to bring community members into the research selection process,” she told me. “We’ve found parents to serve on the committee, but we’ve had a hard time finding adults on the autism spectrum who are willing and able to serve. We think your input would be valuable. Will you join us?”

  I decided to give it a shot. I’d be asked to read research proposals and cast my vote for how the proposed science would affect the autistic community. I was supposed to use my judgement as an autistic adult to decide which pieces of research would be most relevant and beneficial. My opinions would be weighed along with the opinions of parents and autism scientists.