Invisibilia: An Experiment Helps One Woman See The World In A New Way

Jul 7, 2016
Originally published on July 7, 2016 6:33 pm
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ARI SHAPIRO, HOST:

Now a story from the new season of our program Invisibilia. It's about a woman who participated in an experiment. It gave her a whole new frame of reference, and that let her see the world in a completely different way. Here's NPR's Alix Spiegel.

ALIX SPIEGEL, BYLINE: Until she was 54 years old, Kim (ph) was totally unaware that there were things in the world that she could not see.

KIM: This was the whole problem. It was like I had no clue what the problem was.

SPIEGEL: All Kim knew was that people were always responding in ways that she would never expect. It happened all the time.

KIM: I was at summer camp, and there were two girls trying to put up the sail on the sailboat. And I'm always really good at doing those kind of stuff, and I could see what their problem was. So I remember walking up to them, and I wanted to help them, said something like, oh, I can show you how to do that. And they were mad at me. Why would they be mad when I'm trying to help them?

SPIEGEL: 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. It's just that much of the emotion is subtracted. Though for most of her life, she didn't realize that, and so her interactions with other kids could be difficult.

KIM: You know, taunting and name calling, and then it would progress to, you know, physical acts.

SPIEGEL: Quick warning here - if you're triggered by stories about bullying, you might want to stop listening for a minute.

What was your darkest moment?

KIM: The worst thing that ever happened was, I was at summer camp, 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 put me outside, and it was just awful.

SPIEGEL: I'm so sorry.

KIM: Yeah, I mean, you know, it's so hard when you have no idea why people treat you like this.

SPIEGEL: This kind of bullying took place for years, but after high school, things did ease. There were still issues, but Kim had a good job and good friends. And then in 2008, someone close to her was diagnosed with what used to be called Asperger's syndrome, now known as autism spectrum disorder, so Kim decided to do some reading about it.

KIM: Oh, my God. This is the way I think.

SPIEGEL: She went online, found a test which measured Asperger's and clicked through the items.

KIM: I'm good at social chit chat - disagree.

SPIEGEL: Staring into the screen, it suddenly dawned on Kim that she could have Asperger's. She grew up in the '60s, so no one had ever suggested that before. Now, Kim has kept her Asperger's private in her professional life, which is why we're not using her full name. But eventually she did go to an Asperger's support group, and it was there that she heard about the experiment.

KIM: They were saying there are some research studies being done, and there's one currently at Beth Israel Deaconess. So I thought, well, this might be interesting.

SPIEGEL: That's when Kim met Dr. Lindsay Oberman. Oberman is a professor at Brown now, but when Kim met her, she was at Harvard, researching how a procedure called TMS affects people with Asperger's.

LINDSAY OBERMAN: So TMS stands for transcranial magnetic stimulation.

SPIEGEL: Basically in TMS you take this very fancy magnet, hold it to the scalp and send pulses through the skull to get brain cells to activate in a different way. They typically change for a very short period of time - between 15 and 40 minutes. And Dr. Oberman wanted to see if TMS could change the way that people like Kim process language.

And so before and after the experiment, Kim was given language assessments. In one, she was asked to watch video vignettes of people talking. She vividly remembers watching the first.

KIM: There was a guy sitting at a computer, and a woman walked up and said hi to him. And then he said, oh, John (ph) returned your DVDs. And then he said, do you want to check them? And she said, oh, OK. So she picks up the first DVD and opens it, 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 then the guy says, are they OK? And she goes, yeah, they're OK; I would lend them again. So I'm looking at this, and I'm thinking, oh, my gosh, I can't believe she'd actually be willing to lend the DVDs again after they were returned empty. Wow, she's really a generous person.

SPIEGEL: And then came the magnet - a small device maybe 10 inches long shooting an invisible magnetic field in rhythmic bursts through her skull.

KIM: OK, now we watch the same video again. So she walks up. They say hi. She opens the first video. It's empty. She's angry. She slams it down. She opens the second one. She's angry. She slams it down. He says to her, are they OK? And she says in a very sarcastic tone of voice, yes, they're OK. I would lend them again, clearly meaning, no way would I lend this guy any videos again.

SPIEGEL: Wow.

KIM: Everything that was intended in this went completely over my head, and now I saw it - completely missed the meaning of the whole thing until after the TMS. And then I saw the whole thing clearly.

(SOUNDBITE OF MUSIC)

SPIEGEL: Because TMS is so short-lived, Kim's ability to see this way only lasted for a very little while. By the time she drove home, it was gone. And I want to be very clear here and underline - TMS is not currently approved for autism spectrum disorders, and Dr. Oberman says people, particularly children, should steer clear of it at this point because as treatment, it is totally unproven.

But even though TMS has not changed Kim's ability to see long-term, she says she's still happy she got it. She says she thinks a lot about one of the videos she was shown. In it, two employees were saying mean things to a fellow employee named Frank (ph). And Kim says the first time she watched it before the TMS, she couldn't answer any of the questions the researchers were asking about it. But afterwards, she understood not only the video but also one of the big mysteries that had dominated much of her life.

KIM: It never made any sense to me as to why people would be mean to somebody else. Why would you be mean to somebody? And what I saw is that when the two employees were there and were talking together and then were giving Frank a hard time, the primary thing was not that they were trying to be mean to Frank.

The primary thing is that they were bonding, building a bond between the two of them. And it was simply the means to do it was to be nasty to Frank. And then I was like, oh, maybe that's what these kids were doing when they were bullying me.

SPIEGEL: It's much easier to live in a world which makes sense, where people are mean not just for fun but because they, like everyone else, want to belong and feel safe. Now that's the world that Kim lives in. Alix Spiegel, NPR News. Transcript provided by NPR, Copyright NPR.