(Kristen Uroda for NPR)
Editor’s note: This is an excerpt from the latest episode of the Invisibilia podcast and program, which is broadcast on participating public radio stations.
Until she was 54 years old, Kim was totally unaware that there were things in the world she couldn’t see.
“This was the whole problem,” Kim says. “I had no clue what the problem was.”
All Kim knew was that over and over and over again the world didn’t respond the way she expected. People would say things and do things that seemed completely unrelated to what was actually going on. It happened all the time.
Once, as a kid at summer camp, she saw two girls trying to put up a sail on a sailboat. “And I’m always really good at doing that kind of stuff, and I looked at them and I could see what their problem was,” she says. And so she walked up to them, explained that she could help, could show them how to do it.
“And they were mad at me,” she says. The girls started screaming, telling her to go away.
“It was so strange,” she remembers. “It was like … why would they be mad when I’m trying to help them? That makes absolutely no sense. I don’t understand that.”
That was in 1966, when Kim was 12. More than 40 years later, after a researcher spent 30 minutes pressing a fancy magnet to the top of her head, Kim would finally experience firsthand the critical element of the sailing scene that she had missed in 1966: the subtle emotions swirling around.
“I didn’t realize that the overall context was that these people are having a relationship,” Kim says. “I didn’t see things that way. What I would see is the physical aspect of it: There are two people here; they’re on a boat. The boat needs to have the sail go up before it they can sail; therefore, they need help with the sail.”
Now she realizes there was much more happening. It wasn’t just that “those two people are talking.” They were friends, enjoying each other’s company. That was the primary event, not getting ready to sail.
We all carry in our heads invisible frames of reference that filter our experience and shape the way we see the world around us. Those frames are the product of many things — our cultural experience, our assumptions, but also our biology and the way the biology of our particular mind focuses our attention in the world.
Kim’s brain is not great at seeing emotion. When she looks out at the world she physically sees all the things that most people see, but with much of the emotion subtracted. She sees the same tables, the planes, the trees … the people moving back and forth. But the feelings — particularly the subtle ones — are invisible. Though for most of her life she didn’t realize that.
“This is the interesting thing,” Kim says. “We believe our senses, so I didn’t know I was missing anything. If I’m seeing people talking and it simply looks like people are talking, why should I think that they might be feeling angry or sad or anything, if I’m not sensing that?”
This is the story of how Kim was given a window into the world she couldn’t see and how that changed her frame of reference. It was a small window — it only lasted 90 minutes. But it turns out that 90 minutes is more than enough time to unsettle a life. Because all you need to do to unsettle a life is expose it to a new frame of reference.
Before the magnet experiment
Kim grew up in Pennsylvania Dutch Country with middle-class parents and four younger brothers. Talking to her, you get the sense that growing up she could see some emotions in other people, but her read of feelings was pretty basic. She knew that smiling meant someone was happy, that crying meant they were sad, and that people who spoke in loud voices were angry. And she could usually tell if someone was puzzled by something, but emotions more subtle than those were difficult.
Basically, although internally Kim experienced the exact same things any of us do — the anger and love and frustration — she had no way to interpret her emotions, in part because her understanding of emotion in the world around her was so limited.
Of course, the world we live in demands a high amount of emotional dexterity. Emotionally, you need to be fluent and flexible, able to read the world around you and manage how you feel. And if you’re not that way, things can get painful quickly. So it’s no surprise that things got painful for Kim. There was taunting and name calling when she was a kid that progressed to pushing and kicking, and then to more harmful physical acts.
“The worst thing that ever happened was [when] I was at summer camp,” she says. “It was one of those summer camps where there were maybe upper-middle-class kids that were cliquish. And I don’t know what I did — I have no idea — but they actually bound and gagged me and took me out of the cabin at night in the rain and, you know, put me outside. And it was just awful.”
Kim is crying as she explains what happened, still totally mystified. What had she done that caused them to behave this way? “I had no idea,” she says. “I thought they were my friends. I had no idea they weren’t my friends. I didn’t know I was doing something they didn’t like.”
For a long time, this kind of bullying was part of Kim’s day-to-day life. “I would shut myself in my room and just cry and kick the wall and be totally distressed and not know what to do.”
Kim understood from the other kids that there was something wrong with her, but she had no idea what it was. She continued to believe that she was seeing what everyone else saw, and so couldn’t fathom that her responses weren’t the most appropriate and logical. So, on a certain level, she began to dismiss the people around her.
“I thought, ‘Well, these people are crazy,’ ” she says. “What I do makes a whole lot more sense, you know, so I must be better than them in some ways. I’m smarter. I can figure things out. They don’t know how to put up a sail on a sailboat; I can do that.”
And, since Kim is a very bright person, she started using her intellect to make her life easier. It started at summer camp. She decided to be one of the cool kids at camp, and her strategy was to pretend to be bad. So Kim started swearing, and put snakes in the counselor’s sleeping bag. The strategy worked beautifully.
“I didn’t get bullied!” she says. “I didn’t like being bad, ‘cause that’s not who I am. But it felt so good to feel like I could actually have some kind of communication with these other kids and get along with them on some level. And that was actually a really important experience, because it gave me hope that, well, maybe if I do something differently, there might be a different result.”
After ninth grade, Kim moved to a new school, and she used the opportunity to develop new strategies, which also worked out well. Then there was college — also good — and medical school.
In much of her life Kim was able to pass — to function more or less as people who could see emotions did. She had friends and meaningful work, though there were areas of her life she couldn’t fully master, like romance.
“Just that whole kind of give and take — what’s going on with me, what’s bothering me or what isn’t bothering me, or what do I like or what do I not like, what do I want or not want, and what do you want and not want” — was very hard, she says. “It’s so much easier when you call your friend and you say, ‘Do you want to play racquetball?’ And they say ‘yes’ or ‘no.’ ”
So, Kim mostly stayed away from romance. And things were more or less fine. In fact it wasn’t until later, after she graduated from medical school and had established her practice as a doctor, that her inability to see emotions became a big issue again. It surfaced in the place she least expected: in her office, working with her medical assistant.
“I would go through medical assistants left and right,” she says. “It was awful. One year I went through seven medical assistants.”
Again, Kim decided to think her way out of the problem. One day, while talking to her brother on the phone, she happened on a promising new approach.
“I called him at work,” Kim remembers. “And he said, ‘Oh, I was just talking to my secretary about her weekend.’ And I said, ‘You were what? Why would you do that?’ And he said, “I always do that; I just spend some time socializing with her and getting to know her and making her feel like part of the business. I probably talk to her, like, 10 minutes a day.’ ”
Kim was surprised, but intrigued.
“I said, ‘Really! I would never have considered that as an option.’ ”
So off Kim set to incorporate small talk into her daily routine. But that didn’t fix the problem. Her practice was suffering. The constant upheaval was a huge drain.
Then, one day in 2008, someone close to her was diagnosed with what was at the time called Asperger’s syndrome — it’s now described as a “high functioning” form of autism spectrum disorder. So Kim decided to learn more about the topic.
She picked up a book and started reading.
“Oh my God,” she remembers thinking after just a few sentences. “This is the way I think! This is scary.”
She went online, found a test that measured Asperger’s, and clicked through the checklist of items: She was not good at social chitchat, but did like to collect information about different categories of things. She found it difficult to work out people’s intentions and was often told that she kept going on and on about the same thing.
Staring into the screen, it suddenly dawned on Kim that she could have Asperger’s — something no one before had suggested.
“The diagnosis wasn’t even available when I was going to school,” she says.
The idea that she might have Asperger’s terrified Kim. She was a successful person. A working doctor. A woman with friends. She didn’t want to stir the pot.
So she decided to keep her likely diagnosis a secret, at least professionally, which is why NPR has agreed to use only Kim’s first name in this story.
Still, because she was still struggling so much with her employee at work, Kim wanted to find out more about Asperger’s. So she started attending an Asperger’s support group near her home. And it was during one of these sessions that she heard about the thing that would change her life.
Someone in the group told her about research studies on Asperger’s that were starting at Beth Israel Deaconess Medical Center in Boston.
“I thought, ‘Well, this might be interesting,’ ” she says. ” ‘Maybe I’ll learn something.’ ”
A magnet that acted like a switch
Lindsay Oberman is an experimental psychologist and assistant professor at Brown University now, but back in 2008 she was a postdoc at Harvard and part of the team conducting research on the brains of people with Asperger’s. The idea was to investigate how a procedure called TMS affected this population.
TMS stands for transcranial magnetic stimulation. Basically, TMS uses an electromagnetic coil placed next to the scalp to send repeated magnetic pulses painlessly through the skull to stimulate certain brain cells. After a very short period of time (typically 30 minutes of rhythmic pulsing) the magnetic field is thought to activate a targeted region of the brain — just an inch or so beneath the coil.
TMS is very much in the beginning stages of research as far as autism goes, according to scientists studying the technique. It’s not ready for prime time as a treatment for autism, though the FDA has approved it as a treatment for major depression that doesn’t respond to other therapies. Mostly, autism researchers like Oberman are still using the procedure to do small studies aimed at figuring out how best to point the magnet and where in the brain to point it. The experiment Kim heard about at the meeting of her Asperger’s group was precisely that kind of preliminary experiment.
“The goal was not to treat Asperger’s or autism syndrome,” Oberman says of these studies.
In fact the goal of the study Kim showed up for in May 2008 was very modest. Oberman and her colleagues wanted to see if shooting the focused magnetic pulses through the skull at a certain part of the brain could change the way that people who have been diagnosed with Asperger’s process language — their ability to pick up subtle shifts in inflection and tone of voice, for example, and how quickly they are able to read words and how they pronounce the words out loud.
As part of that research, before Kim was placed under the magnet she was given a battery of assessment tests. In one task the scientists displayed sentences on a computer and asked her to read the sentences out loud. The sentences were simple:
“Is this a holdup?”
“I don’t drive a car; I drive a pickup truck.”
“Did they make up?”
“This box is too heavy to pick up.”
Kim read the sentences just as she had read so many sentences before. Then came the magnet. A small, flat device — maybe 10 inches long — was pushed gently against her scalp. With repeated clicks, it shot an invisible magnetic field in rhythmic bursts through her skull.
Kim remembers sitting under the magnet, wondering about the arm of the person whose job it was to physically press the magnet to her head. Were they tired? Shouldn’t they be allowed to rest? She sat there for 30 minutes, the muscles in her face jumping with each click of the magnetic pulse.
Then Kim was given the exact same sentences to read aloud.
Is this a holdup?
This time, she says, that sentence seemed completely different.
The first time, she says, she’d read it pretty much flat, “with a question mark at the end, so you raise your voice at the end of the sentence.”
But after the magnet treatment she says, she felt the terror in those words. “It’s like, ‘Is this a hold up??!!’ There was this sense of, oh my gosh, this would really be fearful, if someone was thinking they were really being held up!”
For the first time, with that sentence and others, Kim felt the emotion of words on a page. She was amazed: “What’s happening?! Oh! This is really wild! I actually understand what’s happening; I can feel it! I can hear it in my voice! Is this what I’ve been missing?”
Kim couldn’t believe the transformation. The words meant so much more than ever before.
“They were conveying meaning and they were conveying emotion,” she says. “And I saw that! I felt that! That was so remarkable! It was, ‘Oh my gosh, this is so much more alive! It’s so much more real, deeper, more meaningful!’ ”
“It’s like black and white to color,” Kim says. “It was a huge difference, and I saw it right away.”
The effects were short-lived; Kim’s ability to see words this way lasted less than an hour. By the time she drove home, it was gone — back to “black and white.” But, in a certain way, that didn’t matter, she says. Her life was changed. Kim had been given a completely new perspective.
Life with a new frame of reference
When Kim left the offices of Beth Israel Deaconess Medical Center that day she was physiologically the same person she’d been four hours earlier, when she went in. But she was different, too.
She went home that afternoon and sat on the couch in the same living room she’d left in the morning. Then it hit her: Her whole life, she’d not been the person she thought she was.
“One of the things that came up was that I realized I had been compensating for everything that I had done when I was young by telling myself that I was better than other people,” she says. “That I was smarter, and the stuff they were doing was really stupid.”
But that day on the couch, “that whole thing kind of came crashing down,” Kim says. “Because, what was really clear here is that, in the ways that I thought I was better, I was not necessarily better. I was definitely different than most people. And I definitely had some issues with the way I processed things that were significantly impacting my life that I didn’t really know about.
“I started getting really depressed.”
For months afterward Kim felt hopeless. There was all this stuff that she had been missing — was still missing — and there was absolutely nothing she could do about it.
“There was a lot of grief,” she remembers. “A lot of sadness.”
Next came the second-guessing. At night, after a long day of work, she would lie in her bed reviewing the day — her interactions with her medical assistants, her conversations with her patients — and asked herself, “Did I do the wrong thing? How did I say that? Did I do that right? Did I do that wrong?”
It was endless.
Kim felt terrible. She wrote a letter to the researchers, telling them how grateful she was to have been in their study, but also, how she was struggling with depression. She yearned to see emotion in the same way again — in fact, reached out to the researchers to let her do more TMS. She assumed that, like before, the effects would be short-term. Researchers say there seems to be a 15- and 40-minute window of a change in perception, to the extent that it happens at all. But Kim still wanted it, and even offered to pay.
But they couldn’t make that work. So, in August 2010, Kim went back to Beth Israel for another TMS experiment, and the effect of this one was even more dramatic.
Like the first study, this one was focused on language. But this time the researchers had Kim watch a series of short video vignettes, with actors playing different parts.
Kim vividly remembers watching the first one: “There was a guy sitting at a computer working,” Kim explains, “and a woman walked up and said hi to him, and they exchanged pleasantries. And he said, ‘John returned your DVDs.’ And she said, ‘OK, great.’ And he said, ‘Do you want to check them?’ and she said yes.”
Next, the woman in the video picks up the first DVD and opens it, Kim says. “And the camera shows that there’s nothing in there. And then she picks up the second one and opens it and it’s empty again. And the guy says, ‘Are they OK?’ And she says, ‘Yup, they’re OK.’ And then she picks up the third one, and it’s also empty and she puts it down. And the guy says, ‘Would you lend him your DVDs again?’ And she says, ‘Sure I would lend them again.’ ”
“So I’m looking at this,” Kim says, “and I’m thinking, ‘Oh, my gosh! I can’t believe that she’d be willing to lend him the DVDs again after they’d been returned empty! Wow! She’s really a generous person!”
When the series of videos ended, the researchers again pressed the magnet to Kim’s scalp, and for 30 minutes its sharp metal click beat in her ear. Then she watched the video about DVDs again.
“So, he walks up, they say hi, she opens the first video. It’s empty. She’s angry!” Kim suddenly realizes. “She slams it down! She opens the second one — she’s angry! She slams it down. He says to her, ‘Are they OK?’ She says to him, in a very sarcastic tone of voice, ‘Yes they’re OK. Sure, I would lend them again’ — clearly meaning, ‘No way would I lend this guy any videos again!’ ”
Kim could not believe the difference after just a few pulses from the magnet.
“Everything that was intended in this went completely over my head, and now I saw it!” Kim says. “The body expression, the facial expression, the tone of voice — I completely missed the meaning of the whole thing until after the TMS, and then I saw the whole thing clearly. This is what life could be like! I could actually understand conversation. I could understand people, rather than being completely oblivious to all the social signals that are flying around. Wouldn’t that be nice?”
Once again, less than an hour after the magnet stopped, Kim’s ability to see subtle emotions evaporated. It was gone. And realistically, in all probability, Kim will never get to live a life where she is able to see the social signals that swirl around her.
Which raises this question: Is it really good to get a window into a world you can never actually inhabit?
On this point Kim is clear: “It would be worth seeing it for one minute. It would be worth seeing one interaction. That’s how big it was. Because you see the way the world works. You see the way people interact, you understand all the subtleties of conversation that happen on a day-to-day basis, and it’s like, ‘Wow, that’s amazing!’ ”
I think what happened with Kim was that seeing this other world gave her self-understanding, and the grace that comes with self-understanding. Suddenly, she saw more clearly what she was, and what she wasn’t. And that really helped her.
But Kim is a person who relentlessly works on herself. She does meditation and therapy and is constantly searching for the best way to be, so it’s not surprising that, for her, this experience bent in a positive direction. She’s the kind of person who always finds a silver lining.
But not everyone would experience what happened that way. Kim agrees.
“It could be that you would get a glimpse of this and you couldn’t have it, and it would be completely heartbreaking,” she says, “and you couldn’t get over it. But that’s not what happened to me. It could happen. I’m not saying it couldn’t. But that’s not what happened to me.”
Where the research stands now
The brevity of the effect Kim experienced isn’t the only aspect that concerns Oberman and other researchers about using TMS as a treatment for autism right now. Kim might be an outlier — she’s one of only a handful of people on the autism spectrum who have reported responding to TMS this way.
Though another participant in the study, John Elder Robison, recently published a book about his own dramatic experience with TMS, there is at this point no predicting from the evidence who might be affected this way or why.
Oberman says that in the second study that Kim took part in — the one with the videos — so few participants had reactions similar to Kim’s that it didn’t amount to a statistically significant finding, and the researchers didn’t publish it.
Peter Enticott, another neuroscientist studying autism at Deakin University in Australia, says, “I’ve done TMS in hundreds of people with autism spectrum disorders, [and] I’ve never seen pronounced, acute effects like Kim’s.” Enticott says he has seen modest improvements in other physical symptoms, such as hand waving, in some of the people he has studied. But many people in the experiments — perhaps most — experience no effects at all.
Even when it comes to treating treatment-resistant depression — a use approved by the FDA — researchers still aren’t sure why TMS works. And they certainly don’t yet know why it might help with autism.
Though the procedure is painless, and seems mostly benign, there are already certain known risks: People who have epilepsy, for example, have a slightly increased risk of seizure during TMS.
At this point, none of the studies using TMS on people with autism have included more than a couple of dozen participants. It’s quite possible that what look like promising results in some of these little studies would disappear in larger clinical trials, Oberman and Enticott agree.
Even the experimental work is “at its very early stages,” Enticott says. “With that comes managing people’s expectations, and not providing unrealistic or false hope.” Every brain and every case of autism is different.
“Maybe we’re on to something,” Oberman says, but the next questions are already pressing: “Why, and how do we make it for everybody? I don’t know yet.”
Oberman is planning more studies. She would like to use the technique in conjunction with MRI, to try to understand more about the workings of each individual’s brain before trying TMS as a treatment.
“We’re doing smarter studies,” Oberman says, but even some fundamental questions “are not going to be answered overnight, or simply.”
As for Kim, she says the pain and self-doubt she felt right after the first experiment have receded, and she now feels more at ease than she did before she glimpsed emotion. She not only understands herself better, she says, but also sees the world differently than she did before participating in the experiments: Maybe partly because it’s more understandable, it seems a kinder place.
She says she still thinks a lot about one of the videos she was shown during the second experiment. In the video two employees were saying mean things to a fellow employee named Frank. Kim says the first time she watched it — before the TMS — she couldn’t answer any of the questions the researchers asked her about it. Afterward though, she understood not only the video, but also, one of the big mysteries that has dominated much of her life.
“It never made any sense to me as to why people would be mean to somebody else. Why would you be mean to somebody?” she asks.
“And what I saw, is that when the two employees were there and talking together, and then were giving Frank a hard time, the primary thing was not that they were trying to be mean to Frank,” Kim says. “The primary thing was that they were bonding. Those two people were actually building a bond between the two of them.”
There means of doing that, she now realizes, “was to be nasty to Frank.”
It made her think back to her own childhood. “Oh! Maybe that’s what these kids were doing when they were bullying me. The primary thing was that they were bonding. The secondary thing was that I was being bullied.”
It’s much easier to live in a world that makes sense and follows a sensible logic — where people are mean, not just for fun, but because they want to belong and feel safe. That’s the world Kim lives in now.
But the point of this story is not that Kim “can’t see” and we can. The truth is we can’t see what we can’t see either. As Kim said, we believe our senses, but our senses often lie. Or, maybe, not lie exactly — it’s just that, like Kim, we have things outside the focus of our attention, and so we often live out our lives inside frames we don’t realize we have.
The nice thing about a frame of reference is that if you can just figure out which one you’re using, you can work to shift it. That’s what happened to Kim. When she was 54 years old, a couple of researchers pressed a magnet to her head, shot a magnetic field through her skull, and now Kim knows a lot more about the life she’s living.
Angus Chen contributed additional reporting to this story.
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