Thirty years ago I’d stood on similar stages as a sound engineer. Today I was a photographer, and another sound engineer stood in my former place by the monitor console. He was up there where I used to be, waiting for the show to begin.
There was a stirring behind me and I realized it was showtime. Charley stepped up to the microphone and announced the band in his trademark drawl. He was barely clear of the spotlight when the first guitar notes rang out. This is gonna be a loud one, I realized, as the bass hit me hard enough to rustle the hairs on my arms. I raised my camera and began to shoot.
They call the area I was in “the pit” because it stands like a moat between the swarming crowd and the musicians onstage. To my right, the stage stood six feet high, and I had to stretch up to see the floor. To my left, a picket fence was all that kept the audience at bay. It was already bulging inward as fans pressed up against the rails and held cellphone cameras at arm’s length like offerings for the band.
I shared the five-foot-wide space with Don and Mark, three more photographers, two video camera operators, and half a dozen solidly built security men. If it weren’t for them we’d surely have been trampled. As it was, we stepped over one another’s gear and cables carefully as we moved from one side of the stage to the other in our quest for that front-page shot.
When I had a moment to pause and reflect, I recalled those long-ago nights in Boston when I built electronic systems and helped produce the shows my equipment played in. Back then I had been an isolated geek building electronic devices with little connection to the people who used them. Now I was part of a community. There was no way I’d have ventured into the pit in the seventies. The people outside the fence seemed like wild animals, waiting to tear me apart. It could be suicidal to go near them, and I didn’t. Why was I different now? Partly, I’m older. But the biggest change—the thing that set me free to go shoulder to shoulder with a mad crowd and shoot the best images of my life—came to me after TMS. That’s what gave me the understanding and confidence to go among people, secure in the knowledge that I was part of a community, and I was safe.
As I moved smoothly between the security guys and camera crew around the stage, I realized that TMS had helped me join the community of man in a way I never had before. A few hours earlier I’d been walking the fairgrounds with my old friend Gene Cassidy, talking to people we passed. “You’re like a politician,” I said to him after his tenth or twentieth handshake, and he laughed and agreed. But I was right there beside him, something no one would have predicted from my behaviour thirty years ago.
When we met, Gene was a young accountant and I was starting my car business. Now we were middle-aged, and he was the president of the fair and I was, well, whatever I became. We’d shared many confidences over the years, including the time I’d learned about my own Asperger’s, fifteen years before. Gene reminded me of that recently.
“I still remember the call,” he told me. “I picked up the phone and said hello. You didn’t even greet me. You just said, ‘Do you think I’m weird?’
“I didn’t know what to say, and you repeated your question. All I could say was ‘No—I think you’re John.’ What kind of a question is that? Then you told me that some psychiatrist or something of the sort had just suggested that you showed traits of this disorder called Asperger’s. You said it was some kind of autism.
“You said you wished you had known that when you were seventeen, and I could tell you were really affected by what you were talking to me about. Very affected, and sort of sad. Hearing you that way made me feel bad. It also made me mad, because I thought whoever the shrink was, he had some nerve saying that to you. I didn’t understand it, so it seemed hurtful.”
I’ve gone from being a machine person who interfaced with humans when he had to to a people person who understands technology. And that’s just one part of my life that’s come full circle. I left music because I wanted the stability of a “real job.” Now I was back on the stage, shooting photos because I had a drive to be creative that overpowered my sense of duty to the “real job.”
The band started its second song with all of us down below shooting away. As the notes rang out, my concentration sharpened, and my sense of who and what was around me disappeared. I was purely in the moment, living the scene in my viewfinder and pressing the shutter when the feeling seemed right.
I tried to recall all the performers I had photographed over the years, and with a start, I realized I’d photographed and interacted with more musicians since doing TMS than I had in the decades since I’d left the music profession.
Not only did I interact with more people, I made more successful connections. That was obvious, walking around earlier with Gene. With the clarity of hindsight, I can understand what happened. My technical achievements and commercial success had made me respectable before TMS. But respect and friendship are two different things. While many people may have respected me, comparatively few wanted to be my friend. Now everywhere I went I felt welcome, walking round the fairgrounds.
Years before, being respected had been my defence against being dismissed, criticized, or even bullied. Now, seeing the alternative, I realize that being a friend is immeasurably better.
The lights onstage changed colour, and the spotlights swung to Peter Keys, hidden way in the back on stage right. With his leather jacket and tattoos, he could have been mistaken for an outlaw biker working backstage security. Then he sat down at the keyboard and hammered out the opening chords of “Free Bird.” The audience roared and I looked around with a start, realizing the concert was almost over. I’d been concentrating so hard I’d spent the last hour on autopilot, and the frame counters on my two cameras showed I’d taken 625 images. A few would turn out to be some of my best shots ever.
I’d started out in the pit in front of the stage, but the band only allowed photography up there for the first three songs. Afterward, I’d spent the show walking the grounds, looking for interesting compositions with the audience and the stage in the distance. Now I stood one hundred yards out in the crowd, surrounded by a massive sea of people—a place I would not have been caught dead in twenty years ago. Yet I was at peace.
I may not have recognized anyone around me in the dark, but everything was all right. Even with the roar of the crowd and the music, I felt secure knowing my wife, John, Gene, and all the others were out there somewhere. I smiled to myself and headed for the gate.
Postscript: The Future
AFTER THE RELEASE of Look Me in the Eye, I received invitations to a number of colleges, schools, and even elementary and pre-school programmes. One place I visited was the Ivymount School in Rockville, Maryland. I was invited there by Lisa Greenman, the mother of one of their students. She introduced me to Monica Adler Werner, who heads Ivymount’s Model Asperger Program, and that spawned a series of collaborations that lasts to this day. Monica showed me a curriculum they were developing—called Unstuck and On Target—that was aimed at helping autistic kids get organized and moving. I was so impressed by it that I wrote a foreword for their workbook, and I became an informal adviser to the programme. As much as I believe in the power of TMS, I also see the value of talk therapies that help people get their lives together.
Monica in turn introduced me to Karin Wulf, the mother of another Ivymount student and a professor of history at the College of William & Mary. Karin invited me to come to their campus, saying, “I want to make our college a friendly place for students on the spectrum.” We talked about the new neurodiversity and autism rights movement that was beginning to gain traction, and Karin was ultimately instrumental in my appointment as William & Mary’s Neurodiversity Scholar in Residence. Together we are developing the first neurodiversity programme at a major American university, and it’s a very cool thing to be part of that process.
As I’ve mentioned, when it comes to science and autism research strategy, I’m still not an expert, but I’m learning as fast as I can. At age fifty-eight, I’m not likely to become a researcher mysel
f, but I’m proud to be part of advisory boards that shape research that’s going on right now. I’ve just started to advise a group at Yale that’s part of an NIH biomarkers consortium. A few years ago, the secretary of Health and Human Services appointed me to the Interagency Autism Coordinating Committee, the top-level autism strategy group for the U.S. government. It’s been a great honour to help develop our government’s strategic plan for autism research. I also serve on the steering committee for the International Classification of Functioning, Disability and Health (ICF) Core Sets for Autism initiative for the World Health Organization. Just reciting that list is enough to make my head spin. How did I ever make the leap from being a car mechanic in New England to doing those jobs on an international stage? If I knew the answer to that, I could package it and sell it for millions of dollars. There are probably many factors, but the one I think of first is TMS, for the insights it gave me, and for the confidence it gave me in myself. In that sense, TMS was like a teacher. And the scientists who answered my questions were teachers too. For me, the combination was very powerful. I look forward to the day when many others will find a similar benefit.
Meanwhile, as exciting and challenging as all that is, I still come home to my cars and to the business I founded to service them. Toy cars were my best comfort as a boy, when I used to put my fire truck up on blocks for service. Later, working on real cars gave me a way to make a living and achieve independence. Whenever I failed to connect with people, my machines were always there. Whatever else I do, they will always be there, waiting. And now there’s an exciting new chapter to that part of my life. We’re doing more high-end restoration work, and we’re turning out some very fine pieces of automotive art. I wonder where that will lead us, and what we will work on next.
Today I split my time between the car company and autism advocacy and teaching. I speak out for the rights of autistic people and our need for community. I speak out for science, because it represents the path to new knowledge, and that’s something we need desperately in the autism world. We have so many challenges, and so few answers.
One tool that can provide those answers is TMS. I know that because I’ve felt its power firsthand. Everyone dreams about greener grass on the other side of that fence; TMS helped me go there and taste it. And though there were some downsides to the TMS—mostly related to the bad feelings I was unexpectedly sensitized to and the collapse of my marriage—I now see that’s the reality of the world. Yet we still have a long way to go toward understanding its potential. As Lindsay has told me repeatedly, “The last thing I want to read is that someone decided to make a home brain stimulator and fried himself because he read scientists were using one-milliamp currents and he decided ten would be better. People have to understand it’s not that simple.” I promised her that I would do my best in this book to share both the promise and the risk and complexity of these new technologies.
And I hope that I have.
Throughout history medicine has strived to fix what was broken and cure what was diseased and by doing so restore us to health. In recent decades that focus has begun to change. We’ve learned how to develop our bodies from merely functional to exceptional. Now, neuroscientists are showing us a similar path for our minds. Researchers like Dr. Just are creating tools that can reveal and explain brain function with remarkable specificity. At the same time, scientists like Dr. Pascual-Leone are developing new ways to reach inside the mind and effect change. When those technologies converge we will see a revolution in treatment of the mind, perhaps even the emergence of a whole new discipline: cognitive exercise and mental fitness.
Autism researchers are hard at work searching for biomarkers—biological parameters that predict or diagnose autism, particularly in infants. Dr. Just, Dr. Pascual-Leone, and Dr. Oberman have each published studies describing their achievements in this area. Dr. Just measured the brain’s response to imagining emotions like humiliation. Drs. Pascual-Leone and Oberman measured the way the brain changed in response to bursts of TMS energy. Both techniques separated autistic from typical subjects with a high degree of accuracy.
There’s no doubt that this is important work, all of it. Identifying autism through precise neurological measurement rather than behavioural observation is a great thing, because it reduces the possibility of error. And it increases the odds that we will remediate its disability successfully, because an understanding of its foundations will be key to changing its effect on us. The earlier we do this, some say, the better. Yet all the scientists who appear in this story have raised real concerns about changing brains in the absence of fuller understanding. They’ve made great progress, but much more remains to be discovered. And as exciting as those developments are, I worry that they may become steps toward a kind of neuro-homogenization. When we develop precise means of identifying neurological difference, and we pair that with targeted interventions to resolve the difference, what do we get?
In the example of Dr. Just’s dyslexia study, we got kids who can now read better, thanks to science. No one would question the benefit of that. The ethical problem appears when we begin testing people for differences and then applying corrective therapies before problems have become apparent.
The thing is, not all differences lead to disability. Some lead to exceptionality. And we don’t necessarily know enough to tell one from the other. Yet we are on the verge of acting on that incomplete knowledge right now in the area of autism.
The problem comes when we presume all difference is disability, and it’s not. There’s a growing body of evidence that some of the world’s smartest and most creative people have traits of autism or other neurological differences. Just seeing things in a unique way can help autistic people solve problems that baffle our typical peers. Most of the exceptional things I’ve done in my life were facilitated by my being autistic. What if all that had been wiped away by early intervention?
Neurostimulation offers the possibility of rewiring our brains to fix previously unfixable disabilities. In theory, early childhood treatments might allow kids who would otherwise grow up disabled the chance to grow up without disability. Some ethicists fear that early intervention could lead to treatment of people who don’t need fixing and the possible blunting of their strengths. As Alvaro showed me, treating someone unnecessarily can create problems of its own. An alternative would be to wait until kids are older and disability becomes visible, and then use treatments to remediate it. Yet some scientists fear that this approach will be too late for an optimal outcome. Children have more brain plasticity than adults, which might mean that TMS would be more effective if done earlier. But it might also mean changing things we don’t intend to, because the developing brain is so susceptible to change.
In my opinion, we need to be very careful about anticipating future disability in very young kids and then applying treatments. Paediatricians know that many developmental problems fix themselves, and normalizing differences should not be a goal in and of itself. Many of humanity’s greatest leaps have come from people who are different. And current tests that predict someone will grow up autistic can’t tell you whether the person will be crippled as an adult, an eccentric genius, or even both. Although TMS has had great benefits for me, I worry about changing kids’ brains in hopes of eliminating disability and snuffing out the fire of creative difference that moves the world forward.
Alvaro and I talked about this on several occasions. One of our questions was why the oldest people in the TMS study seemed to feel the most changed. “Maybe being older helps, because you have a bigger base of life experience to draw on when trying to integrate the effects of TMS,” he suggested. I think that’s quite possibly correct, and if so, we need to be very cautious about stimulating kids who may not be ready to seize what their minds are offered. Perhaps Nick is an example of that. While both he and I experienced temporary cognitive enhancements, only I was able to build a lasting change from them. Cognitive therapy—Dr. Minshew’s area of expertise—may have help
ed. All we can say right now is that it’s one more example of why we need to learn more.
Another thing we need to consider is the attitude young people may bring to treatment. Right now, for example, Nick says he has no interest in future TMS treatments. My inclination would be to respect that. But there are parents who feel quite strongly otherwise. Whose decision should that be? I always wanted friends and acceptance, but I never wanted my differences erased in favour of becoming some kind of smooth-talking robot. There’s also the temporary nature of the change to consider. Some people will feel like me—they can change their lives for the better based on temporary experiences. Others will see the arrival and subsequent fading of TMS’s gifts as a cruel joke, one they want no part of.
With issues like these on the table, it’s clear we need cognitive therapists in the loop, right beside the technicians and scientists. They weren’t a part of my experiences until the very end, when I connected with Dr. Minshew. That’s not to say I was unsupported—Lindsay, Alvaro, and the others were all there for me. And in all fairness, it’s been experiences like mine that have shown the need for therapist backup.
Another ethical quandary we will face is the potential for neuro-enhancement. The Osborne article in The New York Times—the 2003 story I’d read before doing TMS myself—outlined this possibility, and as brain stimulation technology develops and becomes more widely known, more people may seek out off-label brain stimulation in an effort to “improve” their brains. At some point, a line will be crossed. It’s inevitable. In sports, it’s fine to exercise and take vitamins. But swapping out your blood and ingesting steroids to bulk up muscles is forbidden, and dangerous. Yet it’s frequently done. Where will we draw those lines when it comes to the mind? We hope that brain stimulation is safe when administered by experts, but an overdose of stimulation—or stimulation of the wrong places—could be just as dangerous as an overdose of drugs. And where does it end? Will high schoolers of 2024 be given TMS to improve their SAT scores? Will we end up with a black market in brain stimulation? Or will TMS for brain enhancement be banned, like erythropoietin and steroids?
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