Switched On

by John Elder Robison

  In the years since I had done TMS they had refined the technique considerably. When I did the study, the scientists stimulated me with one pulse a second for half an hour. Nick would receive a much faster series of pulses, called a “theta burst,” and the session would be over in a minute. Lindsay and others had found the bursts of TMS to be more effective in other studies. The target for Nick was Broca’s area behind the right front temple, the same location that had produced such dramatic results in me four years earlier.

  The problem with theta burst TMS is how it feels, as the rapid bap-bap-bap gives the distinct impression that something is drilling into your head. I’d experienced that in a 2009 study and described it as “kind of nasty.” There was no sense of the meditative calm I’d experienced before; the rapid pulses just slammed into me one after another, ten times a second. “You’d have to really believe in the promise of this to sit through something like that repeatedly,” I’d told Lindsay at the time.

  Nick’s stimulation was supposed to consist of six hundred pulses over forty seconds, but he asked them to stop three-quarters of the way through. Lindsay didn’t know if they’d done enough to make a difference, but she hoped to find out with before and after exercises, much like the ones I had done. She asked Nick to look at pictures of eyes and choose the word that matched the emotion the eyes were expressing.

  His numerical score showed a small but statistically significant improvement, his mom told me. “But the real change was in how he did the test. Before stimulation, he wrestled with what he was seeing, and it took him half an hour to answer the questions. After TMS, he breezed through the test in just eight minutes. Then he looked the researchers in the eye, thanked them, and said goodbye. On the way out, he walked beside me all the way to the elevator, which was a big departure for him. He didn’t feel any different, but I saw a change in his behaviour right away.

  “He was actually walking differently when we got to the airport to go home,” Kimberley marvelled. For the first time his mom observed him matching her pace, and that of other travellers. He stayed beside her and kept out of other people’s way. His mom believed he was sensing the people around him, for the first time in her memory. “None of the drugs or therapies we tried over the years ever accomplished that,” she would tell me later.

  When they got home his family saw even more changes. “We went to a big indoor water park, where his younger sister ran up to him, excited to show him some of the water slides. As they walked away and she talked and gestured, I noticed him walking right beside her. He also turned his torso, shoulders, and head toward her, paying attention to what she was saying. Subtle as that was, it was a totally new sign of connection to someone else.”

  His parents observed other new connections to the people around him, and they talked with Nick about them. Nick described the change himself as going from “looking at the world through a static-filled TV screen, and after TMS the static is gone and things are just clearer.” If only it had lasted! Lindsay had warned them that the main effects would be temporary, which I’d seen for myself. Seeing those changes fade over the next few days and weeks was surely very hard for Nick and his family. They looked for someone who could do more TMS for Nick out in the Midwest, but there was nothing available. A year later they returned to Boston for a follow-up stimulation, but like my own follow-up in the summer of 2008, the results from the second session were a lot more subtle. Kimberley and her husband had asked Lindsay what more could be tried, and her answer was to invite them back to Boston in the spring of 2013 for ten weeks of twice-weekly TMS.

  I first met Kimberley that spring, just a week before they were scheduled to fly to Boston. I was speaking at the public library in their hometown, and she came to the event. Kimberley walked up to me after I spoke and described their family’s journey, which paralleled mine in so many ways. I said my own TMS experience had been one of the most important things to happen in my life, and I wished them luck in their travels. I resolved to stay in touch to find out what happened.

  After the ten weeks of biweekly stimulation in Boston, Nick’s parents still hadn’t seen any sudden or dramatic shifts in their son, the way they had after that first session. Nick said he felt about the same, but over the summer that followed, all of them saw real but subtle changes. For example, Kimberley told me that Nick took the next year’s English requirement as a summer online class to make the following year easier. “The course covered a year’s worth of material in eight weeks, so the pace was roughly equal to doing a week’s worth of English assignments each day. He did that successfully at home with minimal supervision, and he couldn’t have done that before.”

  The pattern of Nick’s second series of stimulations felt familiar to me. My own experience with restimulating an area had been much the same. The second time around, the effect was more subtle, but more and more changes became visible as time passed.

  Kimberley reported that Nick’s “ability to choose,” which he’d shown after the first session, was back. Where before he got stuck on tests or puzzles, he now made choices easily and moved through the work quickly. He was more open to going places and doing new things. That made him better able to negotiate daily life. That summer, during a family trip to Montana, he said, “It’s like there is more of me here now.”

  My own son had said something very similar when he described a sharper, clearer world around him, and I’d experienced the same thing myself. Kimberley said, “Nick used to have a one-track mind, but now he participates in conversations about things outside his usual interests. He also has more insight into his own reactions. For the first time he recognizes his feelings and discusses them.”

  When Nick returned to school that fall he seemed transformed. He was much more attuned to those around him, both teachers and students. His mom gave me an example: when Nick’s teacher told him she had to add more material on economics to her classes because the curriculum had changed, and that she found this a bit challenging, Nick turned to his mom and said, “We should give her Dad’s economics book. That might be helpful.”

  “That comment might not seem like a big deal,” she told me. “But for Nick to understand something outside of himself, to make the mental connection between her need and a resource his dad had, and to suggest helping in a way that fit with the flow of the conversation—that was a remarkable thing. Nick had always been empathetic if his attention was focused on a certain person, or on the characters in a book or movie, but this was different. He was reacting to an ordinary person in a conversation outside his usual set of topics with a productive suggestion. And he made the comment only once, in a way that fit in with the rhythm of the conversation, with apparently no need to repeat it over and over.”

  Later that fall his teacher wrote a note to Kimberley about how well she thought Nick was doing. “He spends less time balancing on his tippy toes and seems to stutter and repeat himself less. He also carries himself better.” And when he left to look for a new classroom, he was able to connect with another student who showed him the way.

  As the school year progressed Nick’s gains continued. He was getting his homework done by six, and he solved ten math problems in an hour. Prior to the TMS he’d averaged two. At home he described conversations he’d had at school and even remembered the other kids’ names. Best of all, a group of four girls asked him to attend the homecoming dance.

  Sometimes he found the changes overwhelming. “People I have never seen before and have no way of knowing me suddenly say hello.” He suspected that his mother had somehow persuaded strangers in his large public high school to be nice to him, and this made him angry. His mom said, “Honey, if I had that kind of power I wouldn’t have waited until this year to use it!” One day, he said in frustration, “I have ADD and it’s really distracting to have people talking to me all the time and to have to see all these faces all the time.”*

  But then his gains started to fall off. He became gradually slower in getting homework done, needing
more prompts and reminders. The OCD symptoms returned, further slowing his schoolwork and making it tough for him to throw things away, or fill in bubbles on tests, or even write things down without erasing and rewriting. At one point he told his mother, “Yeah, those girls who asked me to the dance have figured out that I’m different and now they don’t want to have anything to do with me.”

  “Our family has been living our own version of the sad parts of Awakenings,” Kimberley told me recently, referring to the 1990 movie based on the book by Oliver Sacks, which tells the real-life story of finding a drug that awakened patients from catatonia—but the effects of the drug then faded.

  As his family watched Nick regress, his “stuckness” returned in full force, and the normal wing-spreading recalcitrance of adolescence made things even worse. “Today, Nick says he can’t remember anything being better after the TMS, he doesn’t acknowledge ever making any positive gains, and he professes himself unwilling to try it again. The school assignments he’d started breezing through are once again an insurmountable challenge. His ability to participate in conversations with others has slipped away, and he’s back to being interested in little besides Minecraft and YouTube videos.”

  As Kimberley says, “Outside of gaming and a few other interests, he doesn’t participate much in conversations unless we drag him in. He doesn’t ask us how we are, and at mealtimes, he sits with his face and body twisted away from us. The lovely parts of his personality that appeared after TMS are hidden once again.”

  One part of me hears that and thinks, Nick’s doing what he wants, and who are we to suggest that he change? Yet I’ve been there myself, and I know the balance between wanting to pursue my own interests and wanting to be part of society. For most people, gaming and withdrawal are not paths to independent living. Teens like Nick have to make some hard decisions, decisions that might be easier for older people like me, with a greater foundation of life experience.

  Nick’s mom described something else that really echoed my experience: “We could have taken Nick to social skills classes for the rest of his life and he wouldn’t have learned what was unlocked inside him with forty seconds of brain stimulation.” It all made such an impression on her that she founded a nonprofit organization called Clearly Present to promote the development of TMS as a therapy for autism. Last year she held her first conference, just before the annual International Meeting for Autism Research (IMFAR). I hope she is successful at raising awareness among the folks who fund medical research because I fully agree that TMS has tremendous potential.

  When we talked, she reminded me of Atul Gawande’s thought-provoking New Yorker piece called “Slow Ideas.” In it, Gawande says that we all want useful medical innovations to spread virally, and in a few cases they do. But for the most part, for large numbers of people to benefit from a new medical discovery, it takes twenty to forty years between the original inspiration and widespread deployment. Gawande’s article spoke to both of us. If others could share our experiences, there would be a lot more interest in supporting this work.

  Nick’s mom expressed her hopes again in a recent note to me. Both of us have seen how TMS has opened up a bright new world for some people with depression. “In the future,” she wrote, “TMS for autism may do something similar, allowing people to be who they are meant to be; expressing the full fragrance of their personality; being fully employed and engaged contributors in the workforce and the community; and forming warm and meaningful connections with other people.”

  * This chapter is based on my correspondence with Nick’s mother, and most of the dialogue is quoted directly. I’ve changed Nick’s name. His mom, Kimberley Hollingsworth Taylor, and the Clearly Present Foundation are identified by their proper names. Her foundation continues to support TMS research.

  * Studies have shown that some 40 percent of people diagnosed with autism also have ADD, ADHD, or OCD.

  Mind Readers

  IN THE SUMMER OF 2012 I witnessed firsthand a technology that begs to be combined with TMS and other emerging stimulation techniques. Scientists are taking tentative steps toward realizing this combined power right now, and when that happens, I believe it will turn neuroscience on its ear.

  We’re all familiar with medical imaging. You may have gotten an MRI to look inside your lungs or to find out what’s wrong with your knee. I saw the results when Alvaro’s researchers did an MRI to make a 3-D model of my brain, with no hair, skin, or skull in the way. And they assured me it was accurate, right down to the whirls and folds of my cortex, where they’d placed blue and red TMS targets. What I never suspected at the time was that the state of the art in brain imaging is a quantum leap beyond that, as Dr. Marcel Just would show me a few years later at his lab at Carnegie Mellon University in Pittsburgh. He’s not just creating images. He is looking at patterns of activation as we see and hear things, and by recognizing those patterns, he is reading minds. And that’s just the beginning.

  I was initially invited to CMU—and its neighbour the University of Pittsburgh—by Dr. Nancy Minshew, Marcel’s partner in research. We had originally met at IMFAR, where she’d asked me if I’d be willing to join a study they were starting. We took a break from the conference to talk about their work and what my role might be.

  The two of them had developed a theory about how different brain areas are interconnected and how those connections differ in people with autism. They hypothesized that the connectivity between the frontal cortex and other parts of the brain was different in autistic people. More specifically, they believe the bandwidth of the data paths in and out of the frontal cortex is lower in folks like me. That’s sort of like saying that autistic people have dial-up modems to connect the frontal cortex and the rear of the brain, while non-autistic people are on high-speed cable. That does not make us dumber, but it sure impairs our ability to process some things. At the same time, though, it may help some of us do other things better.

  Many types of thinking, particularly social processing, depend on coordination between the front of the brain and other areas, and in autistic people, the patterns of thought we develop are altered by virtue of this poorer coordination.

  “We call that ‘frontal-posterior underconnectivity,’” Marcel explained.

  Who wouldn’t volunteer to have his head examined by someone who could utter an explanation like that? And I had another incentive to visit them. Their offices were just a few blocks from the Cathedral of Learning, the tower where my dad taught philosophy when I was five years old. That’s where I learned to ride a bicycle, and I still remembered climbing the endless flights of stairs inside.

  Unfortunately, I didn’t have time to climb those stairs when I got to town, because the researchers popped me right into a scanner. I lay inside for half an hour—far longer than I’d had to lie still back at Harvard—as their machine shot thousands of images of my brain. What they then did with that data was fascinating.

  The individual images looked like slices of my brain, as if I’d been dissected and sectioned as I lay in the machine. They used a supercomputer to analyze each frame and to map the flow of water molecules along the pathways of my brain. When an MRI scanner is used this way—Marcel called the technique “diffusion weighted imaging”—the flow pattern reveals the location of the white matter tracts in the brain. They are the brain’s cabling system, a complex tangle of biological wires connecting all of its different regions. As he said, “It’s a little like unscrambling the connections among a bunch of water hoses in a pitch-black room by being able to see exactly where the liquid is flowing.”

  Later on I got to see the map of white matter tracts of my own brain—it looked like an incredibly complex and strangely coloured wire-frame sculpture displayed on a computer monitor. It didn’t look anything like my head, but Dr. Just assured me that the maps of other research subjects looked the same. My brain data was added to his collection, as I did my small part to help him make what will eventually become a 3-D atlas of the pathways in
side the brain. One day, that atlas may become an important diagnostic tool, but today we gaze at it like medieval mariners reading a map that says, “There be dragons.” We see an immensely complex three-dimensional network of connectivity in the brain, with precious little idea what the waypoints on its roads may be.

  Connectivity is best imagined as the road map of your mind. You know that different parts of the brain do different things. Your visual cortex processes the data from the eyes. The motor cortex operates our arms and legs. The frontal lobes are the seat of abstract thought. All those disparate areas are tied together with a network of biological fibres, like wires between servers in a giant data centre.

  Brain scientists have long known of the corpus callosum—the bundle of fibres that links the left and right hemispheres of the brain. That’s the network that keeps the two sides of the brain in balance, and important as that is, it’s just the tip of the iceberg when it comes to brain pathways. Marcel and his researchers are analyzing scan data to render other less-known bundles of wire visible on a computer screen, to help visualize them and understand how they work. As I saw, they are getting some striking results. To explain them to me, Marcel suggested thinking of brain pathways as our highway system. He’s identified a few big trunks—bundles of nerve fibres—that function like interstate highways: I-80 crossing the country and I-95 going north to south. He’s also identified smaller pathways that serve as the state highways of the mind and a network of local highways, in addition to countless streets, lanes, and drives.

  Our interstates make it possible to transport goods and services rapidly to wherever they are needed, and we appreciate the benefits an efficient highway system brings our economy. The highways in our brains have to be able to move information, as opposed to goods and services, very efficiently. Dr. Just’s current model reveals some two hundred thousand different paths connecting the regions of the brain, and that’s far from a complete picture.