John Elder Robison wasn't diagnosed with autism until middle age.
He grew up unable to understand the emotions or body language of other people. In his bestselling memoir, "Look Me in the Eye: My Life with Asperger's," he writes of spending countless hours alone, studying electronics—which led to a successful career designing gear for rock bands, including flaming, smoking guitars for Kiss.
His new book describes an even more remarkable transformation: how, after decades with Asperger's, his emotions were "switched on."
And sure enough, when I spent an hour with Robison at his business in Amherst, I would've had no idea he was on the autism spectrum, had I not read his books. These days he actually has no trouble looking you in the eye.
"But my ability to adapt, and engage people like you—I wouldn't have been able to have this conversation with you a decade ago," he told me. "Everything I did before was solitary. I designed musical instruments by myself. I designed electronic circuits by myself. Everything was just alone, because I couldn't deal with other people."
Robison says he was transformed by a procedure known as Transcranial Magnetic Stimulation. In 2008, Robison was given an experimental treatment at Beth Israel Deaconess Medical Center. A small but powerful magnetic coil was placed on his head, and he felt "taps" as the energy went into his skull.
Afterwards, the researchers rushed to run some tests before the effects, whatever they were, could wear off. They showed him photos of various faces, and asked him to decode the expressions.
That was it.
"I did the study and I left the hospital, and I thought nothing had changed," he said. "And I got in my car—and this was now a couple of hours after the stimulation—and I turned on the stereo and I played old recordings of bands I'd worked with back in the 70s. It's funny, I was listening to music from Tavares, and I heard 'A Penny for Your Thoughts.'"
Before he realized what was happening, Robison started to cry. Suddenly, he wasn't just hearing the sound. He was feeling the music—for the first time, feeling the emotions of the singers.
It was just so real, and so alive, it was almost like have a hallucination, it was like being back there in the 70s and not even being in the car anymore. And I was just stunned at the power of that, and the realization that something they did to me turned that on.
"It was just so real, and so alive," he said. "It was almost like have a hallucination, it was like being back there in the '70s and not even being in the car anymore. And I was just stunned at the power of that, and the realization that something they did to me turned that on."
That turning on was in 2008, and it hasn't turned off.
It's important to pause and take note: This is one individual's experience, and it would be reckless to raise hope of a cure.
And even if a reliable treatment is found, Robison has some profound concerns about how, and when it would be administered.
He says that while his childhood loneliness was painful, it led him to focus his time and energy on electronics—much to the benefit of classic rock groups like Pink Floyd and Kiss. Robison goes so far as to say the loneliness was a key to his success.
"Imagine if we took away that loneliness, sure, maybe I'd've been happy, but I'd never have created the stuff for Kiss or all those other bands," he said. "And would I be the person I am today? I don't know if I'd be better or worse, but I know I'd be very, very different."
He adds that before we intervene in anyone's childhood, we need to think very carefully.
TMS: A Medical Perspective
Transcranial magnetic stimulation (TMS) is a non-invasive procedure that uses magnetic fields to stimulate nerve cells in the brain. An electromagnetic coil is placed against a person’s scalp, and sends a magnetic pulse that stimulates nerve cells in specific regions of the brain.
The biology of why and how exactly TMS works isn’t really known, but physicians have seen improvements in patients with depression—and in rare cases like that of John Elder Robison, improvement in a patient with autism that shows a glimpse at of the procedure’s potential future.
Dr. Alvaro Pascual-Leone is a professor of neurology at Harvard Medical School who has been studying how autism spectrum disorder affects the brain for many years.
Robison, who was a participant in a number of studies at the university, was both a typical patient and a unique one, Pascual-Leone says.
“The kind of results he had in those experiments are very much in line with the results that other individuals had,” he said.
The difference, according to Pascual-Leone, is the degree to which a short experiment with TMS affected Robison’s daily life.
Initially, researchers believed the effects of TMS on Robison would be short-lived. And in some ways, Pascual-Leone says, the effects themselves were—it was the consequences of those effects that were long lasting.
Imagine that you’ve never seen color before, says Pascual-Leone, and then suddenly you can for a very brief period of time before you revert back to black-and-white. From that moment on, he says, even though you can’t see color anymore, how you relate to the world has a different meaning.
That may explain how TMS had such a profound effect on Robison’s life, according to Pascual-Leone.
“A moment of insight, lasting for 30 minutes, where he was able to relate better to emotions and read the emotions of others, allowed his brain to continue to change and teach itself the meaning of emotional expression," he said.
Robison’s story raises questions about how transcranial magnetic stimulation could change the lives of others with autism.
But Pascual-Leone cautions parents seeking TMS for their children with autism spectrum disorder that it’s not a treatment yet. Robison had a positive outcome, but it’ may have a different effect on every individual.
“We need to learn more about it, and therefore the application of transcranial magnetic stimulation in autism should be done in the setting of a study and carefully monitored, rather than in any clinical application that’s probably too premature at this point.” he said.
For now, Pascual-Leone says, Robison’s story is evidence of the potential and promise of TMS.
“I’m certainly enthusiastic about the possibilities of helping patients in the future,” he said.