Switched
On
BY JOHN ELDER ROBISON
Look Me in the Eye
Be Different
Raising Cubby
Switched On
Switched On
MY JOURNEY FROM ASPERGER’S
TO EMOTIONAL AWAKENING
John Elder Robison
A Oneworld Book
First published in Great Britain and Ireland by Oneworld Publications, 2016
This ebook edition published by Oneworld Publications, 2016
Copyright © John Elder Robison 2016
The moral right of John Elder Robison to be identified as the Author of this work has been asserted by him in accordance with the Copyright, Designs, and Patents Act 1988
All rights reserved
Copyright under Berne Convention
A CIP record for this title is available from the British Library
ISBN 978-1-78074-551-0
eISBN 978-1-78074-552-7
This is a work of non-fiction. Some names and identifying details have been changed.
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For Maripat, who brought our family together with love.
And Mary, who left us too soon.
I’m living at a peak of clarity and beauty I never knew existed. Every part of me is attuned to the work. I soak it up into my pores during the day, and at night—in the moments before I pass off into sleep—ideas explode into my head like fireworks. There is no greater joy than the burst of solution to a problem. Incredible that anything could happen to take away this bubbling energy, the zest that fills everything I do. It’s as if all the knowledge I’ve soaked in during the past months has coalesced and lifted me to a peak of light and understanding. This is beauty, love, and truth all rolled into one. This is joy.
—DANIEL KEYES, Flowers for Algernon
Contents
Author’s Note
Foreword by Alvaro Pascual-Leone, MD, PhD
Prologue
An Electrifying Proposal
The Value of Detachment, Circa 1978
Medical Magnets
Why Change?
Horsepower
Informed Consent
The History of Brain Stimulation
Mapping My Brain
The Night the Music Came Alive
Emotion
Singing for Ambulances
A Family Affair
Seeing into People
Hallucinations and Reality
Awakening
Science Fiction Becomes Real
The Zero-Sum Game
The Shimmer of Music
Aftermath
Nature’s Engineers
Speech
A More Subtle Result
Different Kinds of Success
Rewriting History
Fear
A New Beginning
Tuning Out the Static
Mind Readers
A Death in the Family
Back in the Groove
Postscript: The Future
Afterword by Marcel Adam Just, PhD
Findings and Further Reading
Acknowledgments
Author’s Note
SOME READERS of this story may ask if it’s true. It is. This is a memoir that describes my participation in a series of brain stimulation experiments and what happened next.
Events and conversations were reconstructed as accurately as possible using notes, emails, and the collective memory of others who shared this remarkable adventure with me. While I put words in the mouths of various people, notably the physicians and scientists at Beth Israel Deaconess Medical Center, I do not have recordings or detailed notes of all these conversations and do not mean to imply that those were actually their exact words. They are my best recollection, relating my own perspective.
With that in mind, I asked the key people whose conversations and actions fill this book to read what I wrote and make sure I did not inadvertently misrepresent the things they said or did.
The doctors and scientists involved are all identified, as are most other people in the story. I’ve changed the names of a few other characters to disguise their identity, and made note when that was done, but in every case events are related as accurately as my memory allows.
I’ve done my best to avoid errors when explaining complex neuroscience, and I’ve asked the key scientists to review everything I’ve written for technical accuracy. I have incorporated their many corrections and explanations, and any remaining errors—and I’m sure there are some—are mine alone.
The journey described on these pages was made possible through the hard work and insight of Dr. Alvaro Pascual-Leone, MD, PhD, and the staff of the Berenson-Allen Center for Noninvasive Brain Stimulation at Boston’s Beth Israel Deaconess Medical Center, a teaching hospital of Harvard Medical School. Without you, none of this would have happened.
JOHN ELDER ROBISON
January 2016
Foreword
Dr. Alvaro Pascual-Leone, MD, PhD
IN SWITCHED ON, John Robison has written a remarkable, engaging, and moving story that reminds me of why I first became a physician. In my practice, I try never to lose sight of this admonition attributed to Hippocrates, the Ancient Greek physician who was arguably the father of modern medicine: “If you have to choose between learning about the disease that a patient has, or about the patient who has a disease, choose always the latter.” As a cognitive and behavioural neurologist, my mission is to help patients affected by various neurological and psychiatric conditions, including autism, epilepsy, stroke, Parkinson’s disease, or drug-resistant depression. Modern medicine places immense importance on decision-making based on the most up-to-date science, and on accumulating specialized knowledge of disease, but the truth remains that clinical medical practice, at its core, should be about helping a person—a specific individual—get better. John Robison’s story brings me back to this truth. It echoes through my head every morning when I walk through the doors of the Berenson-Allen Center for Noninvasive Brain Stimulation at Beth Israel Deaconess Medical Center, which I run and where much of the action in this book takes place.
The concept of “brain plasticity” refers to the ongoing capacity of the brain and the nervous system to change itself. Everything that we do, think, feel, and experience changes our brain. A stroke or a traumatic brain injury can affect brain plasticity, and plasticity may also be associated with such developmental disorders as autism. Increased brain plasticity may also potentially endow a person with unanticipated new abilities, as John appears to have experienced in this book. TMS, or transcranial magnetic stimulation, the intervention that John undergoes, provides a unique opportunity for us to learn about the mechanisms of plasticity, and to identify alterations in the brain’s networks that may be responsible for a patient’s problematic symptoms, and also for recovery.
Over the past three decades, TMS has become a valuable tool in psychiatry and neurology, and this book comes at a time when interest in brain stimulation in general, and TMS in particular, is growing. In the United States, the FDA has cleared several devices to deliver TMS for the treatment of medication-resistant depression, migraine, and presurgical brain mapping, and international approval extends to treatment of developmental disorders, pain, stroke recovery, epilepsy, and dementia. Nearly one thousand TMS clinics exist in the United States, where patients who have seen little or no response to drug treatm
ents and other more traditional interventions are being helped. However, knowledge of TMS and its potential remains limited in the medical community and among the general public, and many patients who could benefit from it are not being offered access. This is something that I hope will change in the near future, as stories like John’s come to light. At the same time, more research into the effects of TMS on the brain are needed to improve its therapeutic potential and minimize its risks.
It is important to realize that John’s story is not the experience of a patient undergoing a medical treatment. This was a research study that I led, approved by the ethics committee at Harvard Medical School and Beth Israel Deaconess Medical Center. I was not John’s physician prescribing a treatment for autism. This study aimed to examine fundamental mechanisms of brain function in individuals with autism spectrum disorders and John was one of many study participants. As a study participant, John’s experience is unique and personal. There is immeasurable value in his singularly subjective account, but the results that John experienced and that he describes in this book are his personal ones, and while they are incontrovertibly true and astonishing, they are not necessarily the objective outcomes of the study. That is important to consider. But that said, I do believe that John’s results should inspire every interested science reader out there to wonder at the fascinating inner workings of the brain, and to be encouraged by the potential hope offered by techniques like TMS.
As a research scientist and as a physician who treats patients, my mindset and attitudes are often divided. As a physician, I know that my duty ultimately is to help my patient feel better. But as a scientist, I have been trained to transcend individual experience in order to learn fundamental truths about a disease, a brain process, a condition. If a research participant in one of my studies feels better, my task is to identify and understand the reason for the improvement. Often I am torn between using averages and statistics to blur the individual experiences of patients, and focusing on the experience of each study participant. This is a balancing act. And yet, as John movingly reminds us in his book, medical research involves people, and each patient can teach us invaluable insights.
Medical journals report on objective research findings, but sometimes, as in John’s case, a participant’s subjective experiences are unanticipated and surprising, and they potentially outweigh what we are able to capture with traditional measures of patient outcome. Listening to the experiences of a patient who participates in a study can be incredibly valuable, and I believe that John Robison’s story begs a more patient-based approach to research.
The late Oliver Sacks was a masterful narrator of patient-centred medical histories, and in many ways, John’s story reminds me of some of Sacks’s most fascinating cases. But Sacks was primarily writing about others, whereas John’s book tells a deeply personal tale. His astonishing story of transformation, of overcoming disability and deriving benefit from an experimental intervention that completely changed his life, is rife with inspiring lessons for each of us. It is a strikingly moving personal narrative about the nature of emotion, and about the opportunities afforded us when we seek to understand neurological difference.
ALVARO PASCUAL-LEONE, MD, PHD
Professor of Neurology, Associated Dean for Clinical and Translational Research,
Harvard Medical School Chief, Division of Cognitive Neurology,
Director of the Berenson-Allen Center for Noninvasive
Brain Stimulation, Beth Israel Deaconess Medical Center
Prologue
THERE I WAS, doing seventy-five miles an hour in the left lane on the Massachusetts Turnpike. Suddenly, without any warning, I found myself transported back to a Boston nightclub, circa 1984. It was eight P.M. on April 15, 2008, when everything changed as I switched on my car stereo.
I was fifty years old, half deaf from hanging out with rock and roll bands in my youth, and tired from a long day working on cars. On top of that, I’d just left Boston’s Beth Israel Hospital, where a team of Harvard neuroscientists had run an experiment on me, using high-powered magnetic fields in an attempt to rewire my brain and change my emotional intelligence. I’ve always been weak in that area because I have autism. Some autistic people have trouble talking or understanding language. Others—like me—generally talk fine and listen some of the time, but we often miss the unspoken cues—body language, tone of voice, and subtleties of expression—that make up such a big part of human conversation. I’ve always had a hard time with that. Luckily, my social disability is offset somewhat by my technical skills. But many of the gifts that help me make a living and take care of myself today also left me feeling lonely and broken as a kid. Some vestige of that hurt has remained in me, and that was why I had agreed to join the scientists on what several of my friends had called a crazy quest.
The idea of fixing myself with a fancy new treatment had sounded great in theory, but from what I had seen so far, it hadn’t worked. The scientists had proposed using electromagnets to rearrange connections in my head. It had seemed like science fiction, and maybe that’s all it ever would be. As I got into my car that evening after four hours at the hospital, I was more exhausted and annoyed than when I’d arrived. But otherwise, as far as I could tell, nothing had changed.
The drive to Boston had taken two hours and now I was facing another two hours to get home. What was I doing there? I asked myself. But I knew the answer—I had volunteered for this research study because the scientists had issued a call for autistic adults, and I wanted to “make myself better” in some ill-defined but powerfully felt way.
Those thoughts and a thousand others were all running through my head when I plugged in my iPod and music filled the car. I’d done that same thing a thousand times before and heard nothing more than songs on a car stereo. I hadn’t seen anything at all—just the road ahead. This time the result was strikingly different. All of a sudden, I wasn’t in my car. I wasn’t even in my body. All my senses had gone back in time, and I stood backstage listening to the Tavares brothers singing soul music in a dark, smoky club.
Years ago I’d stood by those stages as the sound engineer, whose job was to make sure the machinery of the show kept running. These days I hung around the stage as a part-time photographer, following performers through my camera lens in the hope of catching that magic moment. This was something totally different. When I’d engineered rock and roll shows all I saw or heard were the little cues that told me everything was okay, or not. Now when I work as a photographer I concentrate so deeply on my subjects that I don’t even hear the sounds of the show. That night in the car, the recorded music captured me and drew me into a world of a long-ago performance in a way I’d never experienced before.
The transition was instantaneous. One moment I was navigating traffic in my Range Rover and the next I was watching five singers in a nightclub. Floodlights hung from the ceiling, illuminating the stage, and I stood just outside the lit area. To my left, on the stage, I saw the Tavares brothers in sport coats and bow ties, with a backup band on the side. A flute player stood in the background, whispering his contributions to the melody every few measures. Tavares is known to the world for singing “More Than a Woman” from the Saturday Night Fever soundtrack, but they had a long history in New England before that and a much larger repertoire of songs. Thirty years earlier I’d been a part of that world, working as a sound engineer and special effects designer. Many of the big Boston venues used my sound and lighting equipment, and I’d stood beside countless stages and watched more performances than I could remember. Was I reliving one of those now, or was this a figment of my imagination? I could not tell then, and I still don’t know today. All I can say is that the experience felt incredibly real. I could almost smell the cigarette smoke on my clothes. And through it all, some separate part of my mind kept driving the car, though I only know that because I didn’t crash.
Meanwhile, the sound of their voices was so clear that I let my mind run free. The musicians and their
gear were right in front of me onstage. Looking into the wings I saw amplifiers and road cases stacked in the darkness. Scanning the club I saw the keyboard player, with his rack of instruments. One of the singers onstage walked toward me, and I heard the swish of the cable as he carried the microphone in his hand.
My vision was crystal clear, my head was full of sound, and I felt totally alive. The sterile digitized songs on my iPod had come to life and the feeling was so magnificently overwhelming that I began to cry. Not because I was happy or sad, but because it was all so intense.
I turned up the volume and sank deeper into the melody. The brothers kept singing, my car kept driving, and tears ran down my face. I felt the beauty of the sound wash over me, and every note was brilliant, new, and alive. This was similar to the way I heard music thirty years earlier, when I had spent every waking moment listening to performances, watching audio signals on my oscilloscope screen, or visualizing the sounds of instruments in my mind. Back then, “listening” was such a detailed experience that I’d recognize individual instruments and their positions on the stage. I’d hear the voices of each background singer, distinct, as he or she stepped up for a chorus. But now the experience was richer and deeper, with an added layer of feeling.
Suddenly I had an insight: Perhaps I was hearing music pure, and true, without the distorting lens of autism. Perhaps others heard that emotion all along, and now I could too. Maybe that was why I had cried—because I could feel the music, something that autistic people do not often experience in response to things we see and hear. I’d always been able to tell when music was happy or sad, but that night the Tavares brothers’ music had hit me with a power that was new and unexpected.
A few hours earlier, back at the hospital, I had listened to two people shouting in anger as they passed in the hall. He’s mad, I said to myself, without a trace of emotion attached to the observation. I was an accurate, logical observer. Now, as I listened to Tavares sing, tears ran down my face as I felt the emotions rise up from the lyrics of “She’s Gone,” “Words and Music,” and “A Penny for Your Thoughts.”
Switched On Page 1