Switched On

by John Elder Robison

  When we’d spoken on the phone, Kim told me she was a physician, about my age, from the other end of the state. When I heard she was a doctor I wondered if she knew something I didn’t. But when I met her she turned out to be an orthopaedist, specializing in bones, not brains, and she didn’t understand any more about the workings of the mind than I did. Kim said she’d learned about her own Asperger’s after her nephew was diagnosed with autism. Then she read my book and my writings online. “As I was reading, a lot of things you wrote about felt familiar to me,” she said. “Then I learned about the Beth Israel TMS study from the Asperger’s Association in Boston, where I’d gone to find out more about Asperger’s in me.” She’d signed up for the study with the hope that she could learn more about herself.

  It felt a bit funny talking to her, because she knew a lot about me from my book, whereas I knew nothing about her. All I could do was pay close attention. And I wondered: How many of the other volunteers had been inspired by my example? Flattering as that notion seemed, it was tempered by a real component of worry. Should I feel responsible for my readers if they’ve followed me down this road? That question alone was evidence of a building change within me; I’d never have asked myself such a thing in the past, but I wondered about other people more and more now.

  Before I began the study, I’d written a blog post I called “Standing on the Brink,” expressing my thoughts on the hope and promise of TMS. In it, I wrote, “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.’” But I acknowledged that my challenges are as real as my gifts, as much as I wish otherwise. I recognized that some people take medication for anxiety, depression, and the other conditions that often accompany autism. I’ve never felt they were right for me. “But I’ve always wondered,” I continued, “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?”

  I reread that blog post as I waited to meet Kim. I still believed everything I had written about the hope that TMS offered. If anything, I believed in TMS more, not less, than when I began. But I was also getting a glimpse of the incredible difficulty neurologists would face in deciding how to use the tool.

  Since Kim and I hadn’t met before that night, I had no idea what she looked like, or where she would be, but we found each other right away. When I speculated on whether that was autistic radar in action, she reminded me there was a photo on my book jacket, and I quieted down in embarrassment.

  We discussed her experiences with the stimulations and the exercises before and after. Both of us had received our stimulations in random order, and the ones she’d done first hadn’t had much impact. But the most recent one was a beauty. As she described it: “Following the stimulation, I looked at people and was able to accurately read their expressions—something I’d had trouble with before. I heard someone talking and I knew they were being sarcastic; I looked at people and I could read how they were feeling.”

  My emotions had been running high ever since that first night I saw the music, and hearing Kim validate my own experience was almost too much for me to bear. I had to close my eyes and compose myself.

  The same thing had happened to me!

  She thought the direct effects had faded, just as they had for me. But she was still reeling from the aftershock. Like me, she had gotten a glimpse of the emotional world in full colour, and after that, life is never the same. But for some reason, our interpretations were—at least initially—virtually opposite. Which of us was right? Did it have to be one or the other?

  Australian philosopher Frank Jackson devised a much debated thought experiment that seems to describe our experiences. It’s called the Mary’s Room analogy.* Lindsay had told me about it one afternoon at the lab. In it, Mary is a scientist specializing in how the brain processes visual data who is forced to investigate the world from a black-and-white room via a monochrome television monitor. She acquires all the technical information there is to obtain about the real world outside—what ripe tomatoes are like, or that the sky is blue. But what will happen when Mary is released from her black-and-white room or is given a colour television monitor? Will she learn anything new or not? Philosophers used the analogy to debate whether experience is about more than simply having the knowledge of what creates that experience. When Jackson described the Mary’s Room analogy in 1982, it was thoughtful speculation. Now Kim and I were living it and discovering the answers firsthand.

  I learned that Kim too had grown up feeling like a social failure. But in spite of that shared background, the way we’d each internalized the TMS experience was strikingly different. Where I saw hope for the future, she saw an explanation for her former failure, and it was devastating. “Suddenly I understood why I have trouble with my friends, and why I don’t get along with my co-workers. TMS showed me everything I’d done wrong in my life, and it overwhelmed me.”

  All of her observations made perfect sense, yet my interpretation of their meaning was different, and I tried to offer that as some comfort. I’m not sure if it helped, but it was the best I could do. Where I saw promise in my new understanding, she saw sadness in lost opportunities. Those are both real perspectives. Neither of us could ever go back and correct our failures. She was crushed, and for a moment, absorbing her feelings with my newfound sensitivity, I felt exactly the same. Maybe she’s right, I thought. Maybe this TMS has just shown us why we fail; maybe it’s nothing more than a cruel joke with patients and researchers as unwitting participants.

  “What am I going to do now?” she asked. “It’s like I’m haunted. I got a glimpse of those emotions but now it’s gone. So now I know what life is like for other people but it’s not that way for me.” Her words made me question my own upbeat attitude. Had I only gotten a glimpse too? Maybe she was the one with a realistic viewpoint. I’d felt I’d acquired a superpower, but I had to wonder—was I just a smiling fool?

  “I think I am still different,” I said, but I had to admit that I wasn’t sure. What I was sure of was that knowledge is power. Just knowing about the emotional brilliance that existed would forever shape how I dealt with people, even if I became oblivious to it again.

  We formed a unique bond that night, talking about our different interpretations of a shared experience. Here’s what she wrote about her experience, in a guest post on my blog, a few weeks later:

  I had an opportunity to participate in a study at Beth Israel Deaconess with Drs. Lindsay Oberman and Shirley Fecteau. They were using transcranial magnetic stimulation of certain brain areas that affect communication.

  I had a remarkable revelation during the study. I was able to see and hear what it is that ordinary people see and hear during a social interaction. I actually understood what emotions the facial expressions were conveying. I understood the tone of voice that the person was using, and what it was conveying. I also understood sarcasm, which I normally do not pick up.

  After seeing how differently my brain was working after the stimulation, it was clear that my brain usually focuses about 90% of my attention on the literal meaning of the words that are being spoken. Before this stimulation, I thought that I read people’s facial expressions and their tone of voice fairly well. However, after seeing the difference following the stimulation, I would say that I miss 50% or more of a social conversation.

  If somebody says something sarcastically, I may completely miss his or her intention. My mind tends to focus on literal meaning. If they are being blatantly sarcastic, I can understand that they don’t intend the literal meaning of their words. However, my mind still tends to focus on the words that were said, even though I understand that’s not their intention. In most cases, this feels quite uncomfortable.

  If they are not as blatantly sarcastic, I think I sometimes pick up something in the way they are talking which doesn’t sound quite right. The tone of voice do
esn’t quite match the literal meaning that my brain is interpreting. This also causes confusion and unease.

  If someone is being sarcastic, but is speaking with a very straight face, I simply hear the literal meaning of the words and don’t understand their intention at all. It seems to me that this is one of the main problems with a social interaction where someone is kidding me. I hear the literal meaning of the words, which sound as though the person does not like me, or does not wish me well. I don’t hear the intention behind it, which is being conveyed by their face or their voice.

  After seeing so clearly all of the aspects of communication that are conveyed by facial expression and tone of voice, I certainly understand why many people with Asperger’s have social anxiety. In some ways, it is as if you are in a foreign country, and aren’t completely fluent in the language. The people speaking to you don’t know that you don’t speak the language, and they expect you to understand what is being said. Your experience is one of trying to understand what is being said, and having to translate what is being said so that you can understand it. It can be anxiety provoking when people expect you to be able to react in a way that you are not able to do. There’s certainly a lot that gets missed or misunderstood. It’s also very tiring to have to constantly try to figure out what is being said, and to be wrong too much of the time.

  I have great hope now that the researchers are finding some specific brain areas that are affected in autism spectrum disorders. As they are able to refine the stimulation techniques, they may be able to influence the brain in ways that can permanently improve communication. As I have just seen, this could be a life-changing experience for millions of people.

  I like to think that our conversation that night helped Kim to see her experience in a more positive light. After getting over the initial shock of understanding her previous social failures, she too began to want that insight back. She also came to see knowledge as power, and both of us realized that seeing into people could strengthen us and change our lives.

  The only question was, how to make it last.

  * Name changed to protect her identity.

  * Mary’s Room is described in Frank Jackson’s 1982 article “Epiphenomenal Qualia.” He expanded upon that in “What Mary Didn’t Know” (1986). Other philosophers chimed in with their replies in There’s Something About Mary (2004).

  Awakening

  NEUROLOGISTS KNOW the brain’s frontal lobe as the seat of higher consciousness, but exactly how that consciousness takes flight from a tangled mass of neurons remains a mystery. The frontal lobe is where we form ideas and make decisions, gather our speech, and consider what’s right and wrong. It’s also the centre of what psychologists call executive function—in other words, organizing ourselves for daily life. Executive functions are things like getting dressed, planning out your day, predicting the consequences of something you might say or do, or deciding whether an action is appealing or not. The frontal lobe is also the region of the brain that interprets others’ behaviours and shapes our responses to them. One way to characterize all that would be to say that it’s the brain’s centre of abstract thought.

  The frontal lobe includes a mass of connections that tie other brain regions together and a calculating engine that makes sense of it all. If the brain has a computational centre, this is it. The frontal lobe also contains Broca’s area, our speech centre. Stimulating or suppressing parts of Broca’s area with TMS can alter or take away the ability to speak. The target areas for my TMS study were associated with Broca’s area too, but those stimulations had implications far beyond affecting speech.

  Most early TMS work targeted brain areas with strong direct connections to the outside world. When those areas are stimulated, the results are perceptible right away. Stimulation of the visual cortex, for example, can make you see waves or sparkles of imaginary light. Stimulation of the motor cortex will make your fingers or toes move on their own. Those things happen the moment the TMS energy hits your brain. One early use of TMS was to help surgeons identify brain functions in those regions before they operated, and they still use it for that today. If you’re going to remove a brain tumour, it’s important to know what the brain matter around it does. TMS is still used on stroke patients, stimulating the motor cortex and other regions to help patients regain fuller use of their bodies. The immediate feedback from TMS stimulation makes the therapy possible.

  Stimulation of the frontal lobe, in comparison, often has no visible effect because you’re not stimulating brain cells with simple direct connections to the outside world. It had been easy for the scientists to figure out where to fire the TMS to make my index finger twitch. But knowing how to fire TMS into my frontal lobe to make me want to twitch my finger . . . that is infinitely more complex. There’s just one set of neurons that actually moves my fingers, and their general location is well known to neurologists. There are a million sequences of thought that could set those cells into action, some of which are under my conscious control and others not.

  Yet that’s in essence what the scientists hoped to accomplish by beaming electromagnetic energy into the heart of my consciousness. The frontal lobe connections they targeted are thought to be unique to humans, and if that’s true, these higher functions are part of what sets us apart from other animals. But the complexity of the frontal lobe meant that isolating what particular connections do is difficult. Any area they might stimulate would be connected to thousands of other brain areas, with most of those connections unknown except in the most general sense. So they could hope to guess correctly about the function of an area, but what else stimulating that area might do would have to be discovered by observation. That was my job, and I took it seriously.

  After the study concluded I learned that the researchers had hoped that one of their stimulations would affect my ability to recognize words. They had theorized that autistic people might be slower to recognize certain words and that comprehension disability might contribute to emotional blindness. Even today I have no idea if that’s true. I’m not even sure if they changed my word comprehension. All I know is that the unintended side effects overshadowed by a thousandfold anything they’d set out to test and measure.

  The TMS surely had an immediate effect on the area where it was aimed. The laws of physics tell us energy was delivered there, even if we don’t know exactly what it did. But that was only part of the TMS effect. The stimulation energy might well have stunned a group of brain cells underneath the coil and knocked them out of action for a few hours. That might be the suppression Alvaro talked about. Suppressing an area would produce effects the scientists could measure right after our sessions.

  But suppressing one area might give other areas a new chance to communicate, and they might start using new pathways in my brain as a result. That process is what neurologists call brain plasticity, and it might well be encouraged by TMS. New paths, and old paths that are rendered accessible after the suppression of the target area, might do any number of things. And it might take a while for those new connections to build up enough traffic for me to notice. There would be no sign of impending mental upheaval as I sat in the lab doing the poststimulation testing. When I did notice, the effect was totally unexpected but still generally related to the original goals of the scientists. Interestingly, Lindsay later told me that I was the only participant who reported “delayed action effects,” like my night of seeing music, or the hallucinations. Yet several participants in the study described changes in themselves very much like the heightened perceptions that came to me a day or so after stimulation. Did our timeline for experiencing results differ, or did I just describe the sequence of events more carefully? That remains a question to be answered.

  Alvaro was one of the first researchers to stimulate the deeper cognitive brain regions. He’d been doing it for ten years before I came along, though most of his earlier work was with depression and other neurological problems, not autism. When we started the study, no one had really tried stimula
ting a small area in the “thoughtful” frontal lobe, or if they had, the results had not been published in a medical or scientific journal. I’d started looking at some of the journal articles and quickly learned that the number of TMS researchers in the world was quite small.

  On one hand, it was neat to realize that Alvaro was one of the leading TMS experts and that he was breaking new ground with his exceptional team. On the other hand, the absence of complementary research meant we were on our own with no precedents or comparisons to guide us. I was patient number one for these autism-emotion experiments. At times it was thrilling to be on the razor’s edge of research science, but at other times I felt like a lab mouse lost in a maze.

  In my reading up on TMS, and contemplating its potential effects, I’d explored the history of brain stimulation. I had first thought “history” referred to work done thirty years ago, and I was shocked to discover that doctors were using electricity to stimulate human brains as early as 1860. That was when Eduard Hitzig, a Prussian army doctor, began zapping soldiers whose brains were exposed by gunshot wounds. Dr. Hitzig found that an electric current applied to the brains of these unfortunate victims—still alive but gravely wounded—made their muscles move involuntarily. The English scientist Michael Faraday had discovered something similar, a few years earlier, when he connected a battery to a frog’s brain and saw it jump clean off his table. I suspect it was stories like these that inspired the fictional Frankenstein’s monster, animated by the power of lightning.

  Hitzig’s ethical justification for electrifying the brains of wounded soldiers rather than treating their injuries has been lost to time, if it ever existed. Perhaps someone thought the electrification was a treatment. No one knows if the doctor made his patients better or accelerated their demise. All that remain are the papers describing his discoveries, and they’re pretty disturbing to read today (especially while waiting for your own stimulation to begin).