For a long time, it was thought that people with autism spectrum disorder lacked emotion, that even the higher-functioning among them navigated the world like logical robots oblivious to “real” feelings. More recently, research has shown their social issues are more likely to stem from difficulty expressing emotion or reading the emotions of others.
Though he wasn’t diagnosed with autism until he was 40, John Elder Robison felt isolated and disconnected throughout his entire youth and early adulthood. But in 2008, at 50, he took part in what became a three-year research project looking at brain function in individuals with autism spectrum disorders and exploring the use of transcranial magnetic stimulation (TMS) to help them.
TMS is a noninvasive procedure that uses magnetic pulses to stimulate nerve cells in the brain. During treatment, a coil is placed against the patient’s scalp and the TMS energy passes through the skull into the outermost layer of the brain. While the idea of electrical brain stimulation has been around for centuries, early techniques involved inserting actual wires — a dangerous and risky procedure. Noninvasive stimulation via electromagnetic energy is much newer — the first successful experimental use took place in the ‘80s. Since then, it’s evolved into a powerful tool for neuroscientists. It’s also a therapeutic tool for stroke recovery, depression, and anxiety relief.
This particular study aimed to use the technique to re-tune the way brain cells communicate, allowing people with autism to better connect to the world and deepen their emotional intelligence — shedding their social blindness. The treatment left Robison momentarily crippled by the weight of other people’s feelings, and he spoke with Science of Us about his experience, which he also discusses in his recently released book, Switched On: A Memoir of Brain Change and Emotional Awakening.
How did you come to take part in this therapy?
A grad student from Beth Israel [a hospital in New York City] approached me and said they were doing a study where they were trying to improve the ability of autistic people to see emotions in others.
The idea of using high-powered magnetic fields to develop emotional insight was intriguing to me, maybe because I work in engineering. But also, I’d felt like an outsider for so long. I’d been excluded from connection with the rest of the world. Here was this woman who came with a technology that I was comfortable with, and the possibility of improving something that had caused me considerable pain.
Talk me through the treatment …
The researchers had theories for where this mechanism that might suppress the ability to read emotion could be located in human brains, but they hadn’t actually tried to target those areas in people. They had already marked these areas for stimulation on their theoretical map of the brain, and they had to determine where those points in my brain were, looking at me from the outside. During my first visit, they did the brain imaging, and they used that to make a 3-D representation of my brain, referenced to the tips of my ears and nose. They would use those images to locate the TMS coil in the actual sessions, a few weeks later.
The next session was another form of calibration. In it, they used a TMS machine to fire single pulses into my motor cortex, which is the part of the brain that operates the muscles that move our arms and legs. By slowly raising the energy level until my finger started to twitch, they could see how sensitive my brain was to TMS.
Then, they did an IQ test and other tests of my ability to recognize faces and eyes, things like that. During those first visits we were just “establishing a baseline.” It was during my fourth or fifth visit to the lab that I actually started to do the TMS that would “change” me.
What happened?
The first thing that was transformative — and nobody expected this — was the stimulation which turned on a dormant ability to “see” music.
Is there any way you can put that into language?
I left the hospital figuring nothing had happened: I was thinking to myself, What kind of crazy fool was I to think that I was gonna do this TMS and suddenly the world was gonna change? But then I got in the car to go home, and I turned on my iPod and it just hit me that the music was real and alive. It had a power and clarity I hadn’t experienced before, and I started thinking about who the song was written for and what it was about. After that, I just saw this brilliant clarity of the music. And I realized that was probably what had made me so successful as a sound engineer.
Do you understand now what was happening?
TMS modified my emotional response to what you might call ordinary situations. I often put it this way: You might be crossing the street and you fall and you skin your knee. I’d say, “Come on, get up!” The very best advice I could give is come on, get going, this car could run you over. People would see my practical response as cold and emotionless. After TMS, I’d look at you and wince at your skinned knee. I never did that before. And I now realize that wincing at your skinned knee is the response most people have. I still have the autistic response, but I’m also aware of what you might now call the “empathetic response from personal experience.” People can tell you about something a million times, and it won’t mean anything to you until you experience it. That said, it’s important to understand that I always had the ability to feel your pain. Like, if you were my girlfriend and you got sick I’d be more worried about you than your own mother. I was always that way. But no matter how much I cared about you, if we were crossing the street, you fell down and skinned your knee, I would see your skinned knee and I would say “Come on, we gotta get going,” or I would say, “Here, I’ll get you a Band-Aid.” I would have a practical response. The way I responded is no reflection on how much I cared for you. I could care for you with all the love in the world and still I’d respond practically.
So you don’t feel you’d really lacked empathy before?
No. In fact, studies have shown that autistic people feel things more deeply, not less at all. It’s true that autism is described as a condition with communication impairment. And so, to be diagnosed with autism, you must have an impaired ability to speak, to understand speech, or to understand or convey unspoken cues.
So what exactly happened when you first stated noticing emotional cues?
It hit me all at once with an intensity that was absolutely scary. As I lay in bed, trying to fall asleep, the world started revolving. I became afraid I was having a stroke. I’d close my eyes and the world would spin like I was drunk, about to throw up. I don’t drink or do drugs. So for me to have the world spinning like that made me think there was something terribly wrong. And not only was the world spinning, I would close my eyes and I would have these really vivid, half-awake, half-asleep dreams that were a collage of things from the past and things that had just happened that day and they were just so real. The experience was so unsettling that I woke up and wrote a 1,500-word missive to the scientists describing what had happened. Then, finally, I was able to fall asleep.
The next day at work I looked at one of my colleagues and I thought to myself: He has the most beautiful brown eyes. That’s the type of thought I simply do not have. I don’t usually have any comment on your eyes because I don’t look in anyone’s eyes. For me to look in your eyes and say that they are beautiful is totally out of character. When I got to work I walked into the waiting room, as I usually do, and I looked at everyone and there was this flood of emotion. I could see it all: They were scared and anxious and eager, and never in my life had I seen something like that. I had to step out of the room because I didn’t know how to cope. It felt like ESP. Maybe in the past I used the logical part of my brain to look at people around me and carefully analyze. I figured out situations using logic. So I had that powerful ability but now the screen of emotion was turned on, too.
So it wasn’t the positive outcome you had hoped for?
I’d fantasized about really understanding other people’s emotional world. I imagined a world of sweetness and light — emotions I’d been missing all my life. But when it happened, the reality showed me what a fool I’d been. Now, I could look at a person and sense all their emotions. And most were downers. Maybe they were upset about whether they could afford to fix their car. Maybe they had kids in college and tuition was choking them. Maybe they were jealous or angry. It was enough to make me burst into tears over ordinary auto service-department conversations. I couldn’t talk and I had to go outside. I must have come across as so very weird.
Could you give another example?
I could always discern when people were hostile towards me if they used verbal cues. They’d say, “I’m angry, you’re a piece of shit, you’re a liar.” There is no mistaking these bad messages. But at the same time, the message that you’re really sweet, I really like you a lot, or something positive like that never really had any effect on me. So, I had always assumed that my problem was that I could not pick up those positive messages. I figured I was as good as anyone else at picking up bad messages. So I thought, well, the world must be full of all these kinds of messages, and if they can switch this on inside me, I’m gonna see all these good messages that are gonna make me happy and joyful, because I can’t get them now! But instead I became aware of all this anger and fear and worry. And it was devastating. I asked myself: What kind of fool was I to imagine that there would be this beautiful world out there, when in fact the newspapers are full of bad news? I realized that I’d deluded myself all this time. The world is not a wonderful, happy place.
Wow.
So back to the waiting room at the car company. Just seeing everyone come in there, and they’re anxious or there’s some worried emotion and it was like the economy was going bad then, and people were afraid they were going broke, they were gonna lose their jobs, or whatever. And there was all this fear, and I realize now, when I look back on that time, that I was able to sail through several economic recessions in my business and be essentially unscathed, because people could come in and they could tell me any horrible shit at all and it didn’t really affect me. I would just listen to them and go about my business. They would, say, be trying to figure out how to afford to send their kid to Yale next year, and I’d listen to it. But I would also know that I was there to put a water pump in their car. I would just listen and we would go about our business and I wouldn’t be bothered by their emotions at all. But after the treatment, people came in with this emotional baggage and it overwhelmed me. I was so confused. My ability to do my job, to fix their car, had nothing to do with what was going on with their kids or their house or their jobs. But now, I was absolutely devastated hearing these things.
So, in a way, you feel your autism had protected you from the pain in the world?
Yes. And now, I realized, that protective shield was suddenly lost. My customers are telling me about crises in their lives and it’s making me unable to oversee the basic repair of their car, because I’m so devastated by emotion. A customer complained about the cost of sending his kid to college and it devastated me. Thirty years earlier, I was completely unaffected by a biker telling me he knocked all the teeth out of a man’s mouth. I was overcome by what you would probably call trivial matters. But that kind of stuff is everywhere. People are worried about sending their kids to school, paying their rent, losing their jobs? It’s everything all the time and I was overwhelmed. There was nothing I could do.
How long did it take to fade away?
Well, that’s the thing — it hasn’t completely faded away. Like right now, you and I could cross the street, and even though we do not know each other that well, if you tripped and fell and skinned your knee, I would look at you and wince. And if you were my wife or my sister or something and that happened, I would be even more distressed. So that change remains in me. These days, you could tell me that you’re afraid that your readers will not like this article or that if your editor doesn’t like it you won’t get paid and I would say, “I hope it works out okay for you, and all.” It would no longer make me really worried for the rest of the evening.
That’s how it used to be?
Right after the TMS I would have been sick with worry. I would not have been able to concentrate on anything, because I’d be worried that you weren’t going to be able to work this out. I’d worry that you would be in big trouble. But I would still be sensitive to you skinning your knee in the street. And of course, in both cases, I understand that it sucks to skin your knee. And in both cases, I gave what I think is the right response: Get out of the street before the car comes. But now I would feel it, too, whereas in the past I wouldn’t have.
Now I know what’s expected. I might say, “Boy, your knee is bleeding, we better get out of the street before a car comes.” I would have at least added that sentence, so it wouldn’t have seemed so totally cold or indifferent.
Can you tell me a bit about your childhood? Where did you grow up?
I was born in a tiny town in Georgia — my father was a preacher. Then he got his doctorate and we moved around a lot. We lived in Pittsburgh, Amherst, and Seattle. I was autistic but I didn’t know it; I just knew that I had problems connecting with people.
Did you have any friends?
My friends were the grad students who would visit my parents. I didn’t play with too many kids. Now that I know autistic kids have focused and unusual interests it makes sense. I probably outpaced the knowledge of my peers. But the hardest part was that I just didn’t have the ability to connect with other kids. I wanted friends, but I didn’t know how to make them. So, I spent a lot of time alone. The teachers assumed I liked to be isolated. I didn’t. I had no idea what to say to the other children.
What sort of stuff did you do?
I would build things with Lincoln Logs and Tinkertoys and then, later on, I got an Erector set. When I got older, I built plastic models. I didn’t do group activities. I did have one friend in nursery school. But he left town when his father took a job on an Indian reservation in Montana. Not long after he left he drowned in an irrigation ditch. He was only 4.
That’s rather heavy for a 4-year-old. Can you remember what you felt about it at the time?
I didn’t know what to make of it and my mother told me not to talk about it. Decades later, I wrote about him in my first book; my mother found that very insensitive. What would his mother think? That little boy died. I didn’t think there was anything wrong with it. He was a child, yes, but he was also my first and only friend. She thought I was very rude. But after the book was published, his mother called me and told me that she really appreciated my sweet story. She wasn’t upset at all.
Other than that boy, I didn’t really have too many friends. In junior high, I did find a few people who I had something in common with, including a girl. We got married in our 20s. Later, we found out that she was autistic. You know, several of my other friends have grown up and realized that they are on the “spectrum.” I guess I saw my likeness in them.
So it’s not as if you didn’t have “feelings”…
My feelings weren’t triggered by the same things that other people considered ordinary. And I think that people who are not autistic think that the therapy I had turned on an autistic person who was a robot with no feelings. And that’s really not accurate.
Were you happy as a child?
There were happy moments. I liked creating circuits, technology, and building things. But I don’t think things “make me happy.” I have an absence of discomfort at times. I was probably even more like that in my childhood.
Had you been diagnosed at that point?
No. I had no idea until I was in my 40s. As a child, I was told I was stupid and lazy and that I refused to apply myself. They thought I was willfully disobedient. As I got older, teachers really antagonized me. They thought they had some power over me, but they didn’t because I didn’t give a fuck. Things went downhill fast — I was getting straight Fs. So I left school when I was 15. It was against the law but they made an exception because their desire to get rid of me was so great.
I had started working on cars and learning about electronics when I was about 13. Then, my first job was on the crew for a rock-and-roll tour. I worked in music and sound engineering into the early ‘80s. I started working at Milton Bradley at the end of the ‘70s. I started my car business as a part-time thing in the early ‘80s, but I quit my job in electronics in 1988 because I had built the car business up into something that would sustain me. I’d always liked cars, but in this role I had to have interaction with customers. I had to deal with people who had broken cars and I had to deal with different faces each day. When I had a regular job I had co-workers who were there each day; the public is a different matter. I had to interact with strangers. That is very hard for me. You only have a minute or two when you meet somebody to decide if you want to get to know him better or if he’s a jerk. People tended to write me off. Many of my encounters failed at the outset. I would have done anything to change that.
How did you know that you were missing these cues?
I knew that people rejected me because I was rude or obnoxious or whatever, and I wanted to not be seen that way.
What was your family like? Did they support your learning or worry about your social development?
My father was a vicious drunk and my mother had psychosis and schizophrenia. She saw demons and monsters hiding on the ceiling, in the closets or bathtubs. She’d regularly get taken to the state hospital. They’d wrap her up in a straitjacket and I’d see it all. That was very disturbing. But, because I’m autistic, I was logical. I just thought, Shit, mom went crazy. It’s hard to explain. I know I was distressed. I was. But I really didn’t think about it that literally. Shit, mom went crazy. She was living in a totally different world. When she had psychotic breaks she’d chain-smoke so fast, all bleary-eyed and weird, talking crazy shit: People were coming over to kill us. “My father or aliens were going to arrive any moment and try to murder us,” she’d whisper. I believed her until I left home.
So you were a hyper-logical kid living in a very unstable, illogical environment. Did something prompt your father’s drinking or was it always that way?
He drank his whole life. His brothers drank. His father drank. It ran in the family. He’d come home from work and just drink all night. If you attempted to disturb him he’d get violent. He would whip us with belts. By the time I was 15 or so he stopped trying to hurt me because I could physically overpower him. My brother tells a story about how I had held my father at bay with a rifle in order to protect him from getting hit, but it was really just a BB gun. After he left he was in the gutter for a while — drunk every night passed out on the floor of his apartment, and then he met a woman who didn’t want to have anything to do with him when he was a drunk. He stopped drinking and quit being violent.
Your childhood sounds dark and terrifying — the people who were there to look after you were obviously very troubled. Do you think your autism protected you when you were younger?
I do. It protected me from really hearing hurtful things that people said. I think they rolled right off and passed into oblivion. I think being autistic allows you to be blind to that and in some ways that is a good thing. Denial was self-preservation, many victims of bullying will tell you that.
Where did you go when you left home?
I moved in with a local rock-and-roll band. I altered the date on my ID to say I was born in 1952, so everyone thought I was in my 20s. I was a big guy, so I passed. My brother ended up going to live with my mother’s psychiatrist and he wrote the book Running With Scissors. By that time, I was on the road with KISS, before that I worked for Pink Floyd’s sound company in New York.
Wait, that’s a lot of social interaction … Was that difficult?
Well, I thought they were weird and they thought I was mechanical and robotic, but we got along okay. They appreciated what I could do. I was accepted by musicians and I always felt welcome there. A lot of musicians looked and acted strange and I was strange, too. They appreciated that. We played a lot of rough venues where there were fights every night. These guys would tell me all these horrible stories: You know, this guy, they knocked all his teeth out or they broke his knees, or whatever they did to him, and then someone else would chime in, Yeah well, you did five years of prison for it, you dumb son of a bitch. I was a big guy and I dressed up as a biker myself, but I never got into fights. Because I’m autistic, I didn’t have any facial expressions and I didn’t have any reactions. I listened to all their horror stories without showing any emotion. These guys probably thought, he’s one mean son of a bitch. They’d tell me these horrible things and I’d just nod and sip my beer. I realize now that if I had said, “It’s horrible! You guys deserve to be in prison!” I surely would have gotten beat up. Who knows what would have happened? But the thing is, I said nothing. And it was because all the stuff they said had no effect on me. And that was my protective autism shield.
Is there any way that you can describe your difficulty reading emotional cues? Is it that you want to read emotions but you can’t? Do you misread? Or are you totally oblivious?
I’m completely oblivious. There’s no way to know. How can you know? You can’t know you’re missing something if you can’t see it. I was governed by logic and rationality. While I did well at my work, I had problems because I was unable to read what people around me were thinking. I said things that offended or antagonized people, even though it was the truth. I’d tell someone I could have done a better job [than they could], and they wouldn’t necessarily like that. But I was always right. History has shown that my circuits were superior. The designs they were showing me were junk and I told them that.
Did you have a romantic life?
I had a girlfriend. We were like best friends in school until I dropped out, but we weren’t sexually involved because I didn’t actually know how to do anything. We got together at 21 and married at 25. Losing my virginity was difficult. I didn’t know what to expect or what to do. It was more stressful than it was pleasant. I was too shy to say anything so we didn’t talk about it. We had a son together and then we got divorced. I started seeing a new woman while I was still with my first wife and we later got married.
Did you see cheating as a logical solution to a problem?
Yeah. I saw myself as so miserable with my first wife, so miserable I felt like my desire to be happy trumped whatever obligations I might have had. I was just so, so miserable. She gave me comfort, it was a much better life.
Did you stay with your son’s mother?
She was strong-willed and combative and we wanted very different things. As she got older, the house became extremely messy. She’d leave food everywhere. It all fell apart. I thought she had let go because she wanted to get rid of me. I thought, As soon as I leave everything will be clean and organized for her and my son. I thought it was just a ploy to get rid of me. But she got worse after I left. We later learned that she’s autistic, too. She has pretty major challenges with executive functioning and her ability to organize and do stuff in life. Her problems were autistic organization and our son also has those problems today.
What prompted you to get diagnosed?
It happened purely by chance. In the ‘90s, a therapist happened to come to get her car fixed. She told me that there was this condition they are talking about in the mental-health community and I could be the poster boy for it. She told me about it, and so that was my initial introduction to Asperger’s and autism.
I was shocked and stunned and my feelings were hurt, but after I thought about it a little I figured it would be better to have a diagnosis like autism rather than be told that I am stupid or lazy. I realized that was a powerful piece of knowledge.
A few years later, I got an official diagnosis.
There’s a kind of paradox at the heart of diagnosis right? Once you have a name for an illness you know what you are and you can seek community and there’s comfort in identity, but then there’s the risk that you get trapped by your diagnosis …
Right. But I think diagnosis certainly helped me. I immediately started reading and I taught myself how to act in ways that were more expected and that had a powerful, positive influence on my life. Simple things, like how close do you stand to a person? How do you show someone that you are paying attention when you have a conversation? Should you look at people? Do you look at their eyes or do you look at their boots? I learned what was expected and, to the extent I could, I taught myself how to behave in more expected ways.
Why did your wife get tested so late in life, too?
She heard that I’d been tested when I was 40 and she said, Well, that’s bullshit. I think she wanted to blame me for the breakup and I think it hit close to home. I think that the symptoms of autism I identified in myself she saw in herself, too, and she didn’t like that. So my diagnosis prompted her to go and get diagnosed, too. By the time that happened she was generally accepting of it, but it really did take her seven or eight years to get to that point. I think autism was at the heart of that breakup because we had a mutual inability to communicate and understand each other. The house fell apart the way it did; I think that was largely an autistic thing, too. I interpreted it as being about getting rid of me — and that’s because I’m autistic.
What was your relationship with your second wife like?
She had clinical depression. I always knew she was depressed. She didn’t come across as an unhappy person, but she’s low-key and subdued. Some days she wouldn’t get out of bed or go to work. I could tell she was a low-energy person. I knew she wasn’t the life of the party but nor was I, so it was okay. I think we were happy for a long time. It wasn’t until after the TMS that her depression became awful and overwhelmed me.
It sounds like one of the most life-changing outcomes was the dissolution of your second marriage. You had this inability to read emotional cues and were living with someone suffering from clinical depression. Can you tell me about what that was like for you guys? Had you been diagnosed with autism before you met her?
It wasn’t as if I didn’t know about her depression; I did. It wasn’t a secret but what hadn’t bothered me before became smothering. And the other thing that happened to me that was really significant, was she had said things to me over the years like, “I don’t feel good today, I’m going to stay in bed.” And I would just leave and go to work. After the treatment, I began to see myself as a bully. I would force her to get up. With this newfound insight I started to find my behavior bullying and mean. I would have internal conversations with myself: Leave her alone. You are being cruel. She doesn’t want to come. I began to feel bad about myself and bad about her and it was a really disruptive cycle of emotions. Both me thinking I was a bully, and also her depression was suffocating me and it was just too much. I saw myself in this horrible light and I didn’t like what I saw, at all.
What’s your analysis of how you are now, so many years after the treatment?
I took part in a basic scientific study that proved unexpectedly life-changing. And it still is. I think it has the potential to be life-changing for many people in many ways. I had the treatment for emotional insight, which is the experimental treatment, but right now you can get mainstream treatments for depression and anxiety in autism that could truly change your life around. Those are major, life-changing things. When you consider that for, say, depression, the current treatment is lifetime dependence on medication. Many, many people suffer from conditions that might be helped by TMS, both now and in the future. And anxiety and depression are here now and they are very real.
I think that treatment like I had will have to come with talk therapy to help work through the tough spots I was talking about earlier. I also think that we have to be really careful to make clear that none of these therapies are a cure. We are not changing the essence of our person; we are just relieving a thing that disables us. If you are an autistic person you might feel like you are fine the way you are but you get really anxious sometimes, and maybe a therapy like this could help. Or you may think, I wish I could connect with people a bit better, and this will help with that. I think people should be able to say I am okay with how I am but I want some help in this particular area.
I think I would have been too scared to do it; what if it had done something terrible to your brain?
I really had no fear. I think my familiarity with the technology made me comfortable and the doctors left a strong impression on me. They seemed smart and caring and had put a lot of thought into how to solve something that had been a real problem. I will say that in the midst of the treatment when that emotional insight came on and then it started to fade away, I did worry that they might take something from me, give me a superpower that might then fade away and I will be left with less than I had before. I was scared at that time. But I wasn’t scared about the tests themselves, I just wasn’t. I don’t know why, but I can say that it wasn’t an issue of bravery v. cowardice; that just wasn’t part of the equation for me. I guess I just wanted to get better. Some people suggested that I must have hated myself, or felt like I had nothing. That wasn’t true. I think I just thought my inability to read people had held me back my whole life. And if there is something that could change that, I should try it.
How different do you think your life would be if you had found out that you are autistic earlier, say in your teens or in childhood?
Maybe I would never have done any of these things. I just can’t know. So much of what has shaped my life is the fact that I did unusual things and people found that interesting. What if I had been diagnosed and helped through school and college? Sure, my life would be different, but how? I really don’t know.