His answer was simple, and it stunned me. “People with autism have trouble reading the unspoken signals of others. The conventional wisdom says they don’t have the wiring in their brains to do it. Some researchers think autistic people have too many brain connections and they’re all jumbled up. Others think they have the wrong connections, and that the wiring isn’t there. We think the wiring is in there, but it’s not working. I’m hoping we can use TMS to activate the paths for emotion and bring that sense to life. We think those networks are in your frontal lobe, and we’ve got several parts of it targeted for study.”
If I understood him correctly, Alvaro was suggesting that I might have the ability to experience what I’d only dreamed of—that it had been there all along in my mind, waiting to be unblocked. I couldn’t wait to find out for myself.
“You won’t have long to wait,” Lindsay told me. “We’ll be starting in the next few weeks.”
They had invited me to dinner in the hope that I might tell a few people about their research, which could help them find volunteers for the study. I’d agreed to talk because my curiosity was piqued. By the time we’d finished our dessert I had not only decided that theirs was a story that had to be shared, I had resolved to take part in their experiments myself.
Why Change?
“WHAT’S WRONG with how you are now?” That’s what Martha and Cubby asked me as I immersed myself in reading about TMS research. “You’re fine the way you are.” I realized there was a large gap between the image I had of myself—an oblivious, insensitive, unwittingly arrogant social failure—and the image others had of me as a successful business owner, auto enthusiast, family man, and author.
There were even people who saw me as a photographer, a creative artist of sorts. I’d taken up image making as a hobby when my son was little, and I seemed to have a knack for it. Performers held a particular fascination for me, and in a sense, photography became a second chance for me in music and entertainment. By the time my son was a teenager, musicians, circus performers, and even some of the big state fairs used my images. Cubby even worked as my assistant at times. With all that apparent success, I can understand why people found it hard to believe that I considered myself a failure, but there it was.
I got my first glimpse of that difference in perception when my book came out and people who knew me read it. Bob Jeffway is one of my oldest friends. We met back in the late 1970s, when we designed electronic games together at Milton Bradley, and thanks to our shared interests and eccentricities we’ve stayed close all these years. Bob’s wife, Celeste, had a particularly memorable reaction. “Jeez, John,” she said. “We’ve known you thirty years and we had no idea you felt like you said in that book. You always seem so confident and secure. . . .” Then Bob told me that he’d also been bullied as a kid, and just the memory of that time was almost enough to make him cry. Yet you’d never have guessed that, to look at him today. I was beginning to realize that none of us knows what another’s life is like.
“What if their machine changes you and you don’t like us anymore?” That was Martha’s fear. My second wife lived with chronic depression, and she was always able to see the downside of things. I’d gotten used to that and had often wondered whether depressed people might see things more as they are rather than how we might wish they would be. I asked myself if what she feared might come true, but I didn’t see how a brain stimulation could make me fond of someone I formerly despised or cause me to turn without warning on my friends.
Like many teens, Cubby seemed mostly indifferent. At eighteen, he was wrapped up in his girlfriend and his chemistry studies and cared far more about the latest organic compounds than anything I might do or say. Martha and I were mostly a source of money, rides, and cellphone service. But there had been many times in my own life when other people had looked at me and said, “You don’t care,” or “You’re just totally indifferent,” when in fact I cared very much. One of the things I’d learned about autism was that it caused me to appear indifferent even when I had very strong feelings about something, and I had to wonder if Cubby was the same as me in that regard. Maybe he really was indifferent, or maybe I just couldn’t tell.
Then there was my ex-wife, Little Bear. Cubby had told her about the research when he saw her—which told me he had been listening after all! She was still dubious about my autism diagnosis, saying it was just my excuse for bad behaviour. The fact that I’d been tested didn’t mean much to her, and the theories of Alvaro and his team meant even less. Whenever I talked to her about autism, she became angry or dismissive. A more emotionally intuitive person might have seen that as a clue that my words were hitting a little too close to home for her, but all I knew was that she yelled at me, so I backed away. Five years later—in a strange twist of fate—she would learn that she too was on the autism spectrum, but that insight and her acceptance of it were still some way in the future.
Cubby’s mom and I had been divorced some years at this point, and we had a contentious relationship. That was partly because I’d started dating Martha while Little Bear and I were still together and it didn’t help that we’d subsequently gotten married and built a house in Amherst, where Cubby eventually chose to live full-time. We’d moved to Amherst for the schools, but Cubby ended up dropping out in eleventh grade, just as I had done thirty years before. He still stayed with Martha and me almost every night, and his mom didn’t like that one little bit.
When I was Cubby’s age, my all-consuming passion had been electronics. For my son, it was organic chemistry. When he was six, I was afraid he’d never learn to read. When he was ten, school psychologists talked of his major learning challenges. Now, on the cusp of adulthood, our son had surmounted many of those challenges and developed an obsession with science.
His interest was so strong that it had caused a rift in our family. Kids who love organic chemistry invariably explore one of two things—drugs or explosives. Cubby chose explosives. His mom had gotten him started with her own interest in model rockets. By the time he turned seventeen, Cubby had taken over our garage with his test tubes and chemicals.
His mom was furious, saying I had lured him away from her, but that wasn’t true. In fact, Cubby and I fought so much about his mad-scientist experiments that he was talking about moving his lab to his mom’s after virtually abandoning her house a few years before. We argued about that a lot, and the TMS study was a welcome distraction from our nonstop bickering.
Little Bear—I still called her that—was sceptical of most things I did, TMS included. “I don’t see the point of it,” she said.
The distinct lack of enthusiasm from my family made me reconsider the wisdom of my intended actions, but only for a moment. My desire for self-improvement was incredibly strong. I’d heard a lifetime of “This is how you are.” Then I learned I was autistic, and the talk changed to “There is no cure for autism.” I’d made the best of things because it was all I could do. I’d even come to see that I had great gifts by virtue of my differences and that my social disability was just one facet of who I was.
Martha said I had a kind of “sad acceptance” of the reality of autism in my life. Just as I lived with my autism, she lived with depression. Everything in her world was sad, so in that sense we seemed to go together. She had tried a dozen drugs to get out from under her depression, but they only lifted the veil partway. In my writing and speaking I had said that my autism was a way of being, that it was part of who I was. That it wasn’t a disease and there was no need for a cure. I still believed that, but I also believed in being the best I could be, particularly by addressing the social blindness that had caused me the most pain throughout my life.
So as I prepared to undergo the treatment, Martha was fearful, Cubby appeared indifferent, and Little Bear was openly dubious about the whole endeavour. But once I’d seen the possibility of change and improvement, my drive to try it was unstoppable.
Horsepower
AS I WAITED for the actual TMS study
to begin, I became obsessed with trying to piece together an understanding of how the machinery worked based on my knowledge of electronics and the things Alvaro and Lindsay had explained. I’d left our dinner with a long list of recommended reading and the invitation to email or call them with any questions. Free tech support for the brain—it was a smart offer on their part, making the whole prospect more appealing to me.
My electronics background had the benefit of making TMS feel familiar and less threatening than it might have been to someone else. Still, I tend to be an anxious person, and so I tried to distract myself from potential downsides by ruminating on the technical aspects and on how I might make a truly meaningful contribution to their work. Never mind whether the researchers actually wanted my assistance—in my autistic way I didn’t give that a moment’s thought.
My friend Dave Rifken, a radiologist at our local hospital, was very interested in the study. The two of us—a pillar of the community and a social outlaw—were an unlikely pair, but we’d bonded over a shared love of Land Rovers and the outdoors. We had been friends for nearly ten years, and now, for the first time, we had a medical topic to talk about, in contrast to our usual banter about Land Rovers, Jeeps, and off-road driving.
My incipient involvement in medical research was right up Dave’s alley. “It’s just fascinating what those guys want to do,” he told me. “Did they tell you what areas they want to stimulate?”
Alvaro had said they had several possible targets in the frontal lobe, one or all of which might contribute to unlocking emotional insight in me. And there was a chance that none of them would do anything. That was the nature of research, he had explained. But the main reason for my ignorance was intentional. As Alvaro told me, “I don’t want to evade your questions about the exact areas we target, but I’m afraid to tell you too much because I don’t want to risk that your responses to TMS will be affected by knowledge of what we are doing. We have to do our best to ensure that your responses are the result of the TMS and not affected by the power of suggestion. The human brain has a remarkable ability to change itself, and I don’t want to tell you things that might set your mind on a path that would alter the results in our study.”
When we’d spoken at dinner he’d given me an example of how this could happen. One group of students in a research study was told they were exceptionally smart and gifted. Another group of students was told they were just average. Even though the two groups started out matched, the “smart” students outperformed the “average” ones.
That difference was all in their minds, but the better test scores were real. Hearing that, I agreed that Alvaro’s decision to keep me in the dark about the specifics made sense, and I’d also agreed that I wouldn’t ask about the exact areas that were stimulated until we were done, or reveal anything I learned about those areas to anyone else. “We’re happy to explain it all to you afterward,” he assured me, and I began looking forward to that moment.
When I repeated that to Dave, he said, “You’d better start studying the brain, so you can make sense of the explanation when you get it.” I agreed with him, but I was also captivated by the other side of TMS—the electronic technology. Dave was dubious of my intensive interest there. “What’s a schematic diagram of the machine going to tell you about the treatment?” he asked me. “Figuring out how the stimulator works isn’t going to tell you any more about what it does in your head than taking apart an X-ray machine will tell you about setting a broken leg.”
With some chagrin, I realized he was right, but it didn’t stop my pondering. I wanted to be useful to the project as more than a guinea pig, and the technology seemed a promising pathway.
In search of a more receptive ear, I turned to my friend Bob Jeffway. As an engineer, he had a totally opposite view, one that was considerably more adventurous. “Of course the technology is important. Let’s figure out how it works. Maybe we can design a home version and try it ourselves. Who needs doctors?”
Bob was very good at imagining ways in which cool and interesting million-dollar electronic systems could be reduced to their $39.95 essentials and sold in Toys“R”Us. We’d pulled that off together when we worked at Milton Bradley, building the first toys with electronic speech, and he’d continued doing projects like that on his own ever since.
Entertaining as the prospect was, I didn’t need a do-it-yourself version. Lindsay had already offered me a free ride at the lab. “Maybe later,” I told Bob, and went back to exploring what the TMS machine would have to be like to deliver the kind of magnetic pulses that could actually change my brain.
A few calculations and a little bit of reading told me they needed some serious power to do what they proposed. There were two reasons for that. First, the wires between brain cells are tiny, and it’s very difficult to induce a big charge in a tiny object. Electromagnetic energy prefers big coils of copper wire to microscopic threads of conductive brain tissue. Another complication would be the distance between the TMS coil and the brain cells the researchers wanted to energize. Radiated energy—whether it’s light, sound, or magnetism—dissipates rapidly as you move away from the source. Shine a penlight into your eye and it’s unbearably bright. Shine the same light into a big warehouse and it barely penetrates the darkness.
Double the distance equals one-fourth the illumination; that was the rule of thumb we used in my music and theatre days, and I realized it was generally applicable to TMS as well. You can see this principle clearly with a light meter, a tool professional photographers and stage designers use daily. If the light meter reads 100 when you stand 10 feet from a light, it will read 25 when you move back 10 more feet. With magnetic fields, the energy also diffuses with distance, like ripples on a pond.
Although the distances in TMS would be much smaller—fractions of an inch—I realized that the principle would be the same and the effect even more dramatic. In music we measured the strength of a loudspeaker magnet at a distance of a millimetre from the surface. At that distance, its strength was quite impressive. But just 2 millimetres away, it was only a quarter as strong. Four millimetres back, the strength was down to one-sixteenth. Get back 25 millimetres—a mere inch—and the strongest loudspeaker’s magnetic field was reduced to almost nothing.
This is why magnets in a high-performance sound system had to be so big and why the coils in the loudspeakers had to be so close to the magnets. A big concert sound system could have a couple hundred speakers with several thousand pounds of high-performance magnets at their core. Everything fitted together very tightly to stay in the confines of the concentrated magnetic fields.
TMS would be a lot harder to execute successfully, because the magnetic field had to reach through my hair, skin, and skull. That was at least a half inch—way more distance than any loudspeaker system. If you put a speaker coil that far from its magnet it wouldn’t work at all. That made me realize that the magnets for TMS had to be orders of magnitude more powerful than anything I had used in music.
We’d packed a lot of punch into our amplifiers, but you’d have to ramp that up a hundredfold to deliver electromagnetic energy across a half-inch gap. That was some serious power—truly lightning in a bottle—which made me wonder how safe the whole proposition was. The TMS machine was certainly going to be generating thousands of volts to get the kind of power they would need. But I told myself that electrical safety is of paramount importance when designing gear for a hospital. I had to trust that the TMS machine designers had done their job and that all of us would be safe. I resolved to treat the equipment with a healthy dose of respect.
My mind wandered as I tried to imagine what the actual sessions would be like. The power levels would be high enough that the coil would make an audible pop when it fired. Might that sound affect my response? What about heat? The magnetic fields would warm my brain cells to some degree. Microwave ovens use a similar principle, only in concentrated form, but they probably didn’t plan to cook me in the TMS lab. There were all sorts of ways I cou
ld have talked myself out of going through with the study, but instead I jumped in headfirst, with hardly a moment’s hesitation. Alvaro was a professor at Harvard and the head of a brain centre at one of the top hospitals in the country. Both he and Lindsay were obviously bright and dedicated. If anyone had the resources to get and use safe, top-notch lab equipment it would surely be them. And as Alvaro had told me at dinner, he’d been doing TMS for almost twenty years.
And most of all, the goal they were pursuing was very dear to me. I resolved to believe and trust them. They would not fry me or my brain. We would go down this road together—they as the experimenters and me as the lab rat—and we would see what that energy did when it got inside my head.
Informed Consent
WHEN WE WERE at the restaurant, Alvaro and Lindsay had invited to me to visit their lab before the study began, and of course I took them up on it. I’d looked at pictures of TMS equipment online and studied how it worked. The next step was to observe the scientists in their den. Later in the week following our dinner I made the drive from Amherst to Boston. When I exited the turnpike, emerging in a valley of strip malls and car lots, I was afraid I’d taken a wrong turn. Eventually parkland opened up on both sides of the street and I saw tall buildings towering ahead of me. I drove through a very impressive hospital campus before finding the entrance for Beth Israel and turning in.
A receptionist gave me directions to the brain centre, and after walking for what seemed like half a mile I finally reached my destination—the Berenson-Allen Center for Noninvasive Brain Stimulation. The walls of the quiet waiting area were lined with framed magazine articles describing the work the scientists had done, the acclaim they had earned, and the patents they’d been awarded.
No one had noticed my entrance, so I walked down the hall and gazed into the open doorways, hoping to learn something.
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