Nov 12, 2015

DIY

Two stories of humans DIY-ing answers to seemingly unsolvable problems. First, a homemade brain-stimulator that may unlock hidden potential. In the last couple years, tDCS has been all over the news. Researchers claim that juicing the brain with just 2 milliamps (think 9-volt battery) can help with everything from learning languages, to quitting smoking, to overcoming depression. Sally Adee, an editor at New Scientist, was at a conference for DARPA - The Defense Advanced Research Projects Agency - when she heard about a way to speed up learning with something called trans-cranial direct current stimulation (tDCS). A couple years later, Sally found herself wielding an M4 assault rifle, picking off enemy combatants with a battery wired to her temple. Of course, it was a simulation, but Sally's sniper skills made producer Soren Wheeler wonder what we should think of the world of brain stimulation. 

Then, the story of a family that finds an unlikely way to access their silent son's world. Ron and Cornelia Suskind had two healthy young sons, promising careers, and a brand new home when their youngest son Owen started to disappear. 3 months later a specialist sat Ron and Cornelia down and said the word that changed everything for them: Autism. We set off to figure out what their story can tell us about Autism, a disorder with a wide spectrum of symptoms and severity. Along the way, we speak to specialists, therapists, and advocates including Simon Baron-Cohen, Barry and Raun Kaufmann, Dave Royko, Geraldine Dawson, Temple Grandin, and Gil Tippy.

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Jad: Okay. What do we do in this hour, this late hour?

Robert: I'll say it in one word we can just make this very crisp.

Jad: Do it.

Robert: Juice.

Jad: Juice?

Robert: Juice. The word juice, it means-- "Well, what does it mean?" It means that plugging in something into a wall socket out comes--

Jad: Juice.

Robert: Yes.

Jad: There's also, of course, the--

Robert: Well, you don't like the sound of it, but that's how people sound when they drink [crosstalk]-

Jad: Gives me chills.

Robert: -drinking juice.

Jad: All right. Two different kinds of juice is what you're saying.

Robert: Two different stories.

Jad: All right. This is Radiolab. I'm Jad Abumrad.

Robert: I'm Robert Krulwich.

Soren: I'm Soren Wheeler and this--

Robert: All right. If you want to sit there. I don't know, can you hear anyone?

Sally: Can I hear anyone?

Soren: I don't know. Can you hear anyone?

Sally: Oh my God. Soren, Hi. [chukles]

Robert: You know this person?

Sally: Thank you. Yes I do.

Soren: This is Sally Adee.

Sally: How are you?

Soren: We went to school together a long time ago but these days, she's an editor.

Sally: At New Scientist in London.

Soren: The reason I called her into the studio is because of something that happened to her when she was working on a story for them.

Sally: Yes, this was a story that I'd been chasing for years and years.

Soren: Again, for her.

Sally: In 2007, at DARPA tech--

Soren: Which is a big gathering of weapons developers and researchers.

Sally: It's like 5,000 guys all looking like Agent Smith from the matrix looking at the latest war toys--

Soren: Drones, bazookas. Anyway, at some point, she starts talking to this woman.

Sally: She was telling me about her program which was, that they had figured out how to apply electrical current to the brain in order to accelerate the learning process. I was like, "No--"

Soren: What Sally had stumbled into was something called TDCS stands for Transcranial Direct Current Stimulation. The idea is you take a couple of little electrodes, you place them on your scalp, connected with wires to a battery. You send a little bit of electricity into your brain and then all kinds of things happen if you believe the claims. For Sally, it started with a casual afternoon of--

Sally: Sniper training.

Soren: After that conversation at the conference, she tracked down a group in Carlsbad, California.

Sally: It's about an hour and a half south of LA.

Soren: Who were using this brain zapping stuff to train snipers.

Sally: And--

Soren: After a late-night international flight and some LA traffic--

Sally: I haven't slept. I'm sleep-deprived.

Soren: Sally found herself at a place called Advanced Brain Monitoring where they have a little room.

Sally: This little room where they've set up a little 360-degree training simulation. It's like a video game, but it's like the full room in front of you.

Soren: Like the whole wall is a screen?

Sally: Yes.

Soren: "Not only that," she says but all around you in this room are these props.

Sally: You're behind real sandbags in proper position. They teach you how to hold the rifle properly.

Soren: The rifle, except for the fact that it shoots blanks, it's basically the real deal.

Sally: Yes. Then it's got a laser sight.

Soren: They tell her, "Okay, before we do this brain stimulation thing, we're actually going to have you do some training without it," so they get her all set up they put her behind the sandbags and they hit go.

Sally: At first, it starts out with really easy stuff like you're shooting virtual targets that aren't people. It's realistic, you get the kickback from the CO2 Cartridge and then you get this ding sound from when you hit the virtual metal target.

Soren: Then it starts getting harder so there's people instead of targets and then more and more people--

Sally: Until the highest level is you are at a checkpoint, like an Iraqi checkpoint, and everything's fine and then all of a sudden, the Humvee in front of you blows up. Then from all over the place dozens of people in suicide bomb vests start running at you with their rifles shooting you. I'm just being blown up. I can't make the decisions fast enough.

Soren: She said, "There were just too many of them." She couldn't figure out who to shoot first.

Sally: Oh, God, and I was so tired and I was so jet-lagged. I was so bad at it. It's funny because you think like, "Oh, whatever, that's a video game." It's amazing how stressful that gets.

Soren: At a certain point, the stress started getting to her.

Sally: Like, "Oh my God this isn't going to be a story and really you just flew out to California for this."

Mike: She was not very good at it, and it stressed her out.

Soren: Then this guy walked into the room.

Sally: Mike Weissen-

Soren: He's a neuroscientist.

Sally: -has put together this contraption.

Jad: What is that big box that's sitting in your lap there?

Mike: This is a big red toolbox that we got literally from Sears.

Jad: Mike was actually passing through New York City so we invited him into the studio.

Mike: We have electrodes that allow us to deliver current.

Jad: Yes, a bunch of wires I saw.

Mike: Yes and a whole bunch of batteries.

Jad: We take a set of electrodes.

Sally: One electrode is attached to my right temple. The other electrode is attached by a different wire to my left arm.

Mike: We turn on the juice.

Soren: Did it hurt?

Sally: It wasn't so much that. I suddenly tasted metal in my mouth. It tasted like I had licked the inside of an aluminum can. Then he's like, "All right, try it again." I'm like, "Urgh." I'm not exactly expecting different results. They start me out again right at the really hard checkpoint one. The thing blows up and then people start coming from all over the place. I feel like they must've put it on an easy setting. Everything's just a little more straightforward. It's more obvious who I should pick off first. I'm thinking to myself a little bit, "When is this going to get really hard again?"

Then the intern, or whoever comes in and turns on the lights. She's like, "Okay, you're done." I'm like, "Well, wait I've only been here for like three minutes." She's like, "No, no, no, no, that was 20 minutes." I'm like, "No, that's not true." I look up and the clocks have all shifted by 20 minutes. I swear to God it was three minutes.

Mike: Almost every person that we put this on says they get into what they call a state of flow, where they don't recognize that the time is going by, they're just boom, boom, boom, boom.

Sally: I was like, "Did you guys make it easier?" They're like, "No, same level." I'm like, "I think you guys made it easy."

Mike: When Sally did it with brain stimulation, she performed at 100% accuracy.

Sally: 100%. I didn't leave anyone alive.

Soren: What was she before?

Mike: I don't know, but she wasn't very good.

Soren: Roughly 3/20 the first time and 20/20 the second?

Mike: Yes.

Soren: Wait, so you're saying with just a little electricity, she went from being totally inept to like a trained killer?

Mike: Well, it's an N of one so we can't go too far.

Soren: This was just Sally's experience during this one demo so it's not like a controlled study. Mike has now used this device in a bunch of studies for the military. For example, he had one study with people, looking at those--

Mike: Grainy black and white radar images.

Soren: Trying to pick out what's an enemy vehicle and what isn't. If he puts this device on their head while they're trying to learn how to do that--

Mike: We can double the rate of learning.

Soren: Really? How? What is it doing?

Mike: Okay, so what I think is that early on when you are learning something--

Soren: Mike says that when you're trying to learn how to do something that's tough, what's happening is that you're trying a bunch of different things. You try all kinds of different ways to solve the problem. Occasionally your brain is stumbling across an ideal sequence of neurons. Every so often as you're practicing, all of a sudden, your brain is like, "Oh, this then this, then this and this. Okay, that's it." Then it struggles to find that again, and it keeps messing up and whatever. If you look at an expert brain, you'll actually see that preferred circuit dialed in. They just do that over and over and over again, no more stumbling around.

What Mike does is he figures out where that circuit is and he gives it a little extra juice to--

Mike: In essence, prime the pump.

Soren: So that expert circuit is more likely to fire and you're more likely to stumble into it. When you do stumble into it, you're more likely to stick with it.

Mike: That's right. That's how we think it works.

Jad: Are you sure of what you're hitting? You're putting electricity on the outside of people's heads. Are you able to target just a small cluster of brain cells? Or is it a region that you're hitting or like 1,000 cells?

Mike: What I'm talking about is millions of cells.

Jad: That's a lot.

Mike: Yes.

Robert: Is that precise enough to target the place where a task is being done in a brain if it's a million?

Mike: In our work, yes.

Soren: Mike claims that even though it's a blunt tool.

Mike: Yes, this is not a scalpel. This is a sledgehammer.

Soren: If you know the right group of neurons or region of the brain to target, this can work with almost any task.

Mike: If you want to target visual-spatial learning, for example, searching an image, you'd put this on the right side of your head, roughly near the temple. If you want it to learn textual material, you can put this on the left side of your head and it will have a similar effect.

Jad: If you want to learn textual material

Robert: Can't be true. You mean if I want to learn irregular verbs in French, I get one of your things, I stick it in the part of my head that is going over grammar?

Mike: We haven't tested him with learning foreign languages. But if a native English speaker is learning a long English sentence, they can recall it with greater fidelity if they have this on their head while they study those sentences. If you go right parietal back over just behind your ear and up above your ear, you can learn math better.

[chuckling]

Soren: No matter what, it just seems like the next flavor of new age thing so I started calling around.

[phone rings]

Soner: Hello?

Peter: My name is Peter Reiner. I'm a professor at the University of British Columbia.

Soner: Cool. Peter Reiner actually studies this whole field. He looks at public perception and the quality of the research and I just basically asked him, "Is this for real?" If you have a healthy brain, you put a little electricity into it, has it been proven that that will enhance learning or whatever else they claim?

Peter: Well, maybe the best way to answer that is that part of the reason that there's all this interest at TDCS appears to be relatively effective.

Soner: He says, "This is based on a lot of different studies and a lot of different areas."

Peter: The key to what I just said is relatively. The caveat that I have to add is that pretty much all of the studies that have been done to date are relatively small.

Soner: He says it's in early days. The studies that have been done have only been done with a few subjects.

Peter: Maybe 20 people, larger studies, 40 or 50.

Soner: Now, a lot of these studies do find a positive effect but if you're hard-nosed scientists, those small sample sizes aren't enough to make a very big claim. Even so--

Man: I'm turning it on. Moment of truth.

Soner: The cat's already out of the bag because if you go on YouTube--

Man: White flash, really brief, really quick. That's cool.

Soren: You can find a surprisingly large number of videos of people experimenting with these devices.

Woman: I instantly feel very good, very calm, very safe, not really worried about anything.

Soren: A lot of the videos show you how to make your own.

Man 2: First, we'll start with the circuit diagram.

Soren: You can just go to RadioShack and buy a few simple parts.

Man 2: There's the battery. That's going to be your nine-volt.

Man 3: Here's a few alligator clips since they don't have any solder with me, although--

Man 2: I have a switch in the circuit.

Soren: YouTube just seems to be filled with people who are trying to hotwire their own brain.

Man 3: For the past year, I've been wanting to increase my brainpower since I have probably below average brainpower compared to normal people.

Man 4: I want to study neurosciences but--

Man 2: All right, I want to give you an update on using tDCS to learn a foreign language.

Nick: People are using this for a whole range of things given how flexible the technique is.

Soren: That's Nick Fitz. He works with Peter Reiner, the guy we talked to earlier. He says not only can you do a lot of different kinds of things with this device, on top of that, it's dirt cheap.

Nick: Let's say, in the time that it takes me to listen to one of your episodes, I could probably go to the store, come back and build a tDCS device for around $20.

Soren: For $20?

Nick: Right. As I said, I'm--

Soren: Is that something that makes you nervous?

Nick: I'll say first, I think the DIY community is quite thoughtful. It does make me nervous that some people that report loss of consciousness after using it. There are people that are reporting feeling burns.

Soren: There's actually one report of somebody going temporarily blind, which brings up the larger point that this device is impossibly hard to regulate because a kid like this can put it anywhere he wants in his head and if he moves it just a couple of inches, it could have a drastically different effect.

Peter: That's really what is a concern.

Soren: Because according to Peter Reiner, while we might like to think of the brain as being a bunch of separate circuits that do separate tasks, really, it's an ecosystem. Every part affects every other part in some way.

Peter: When you put your electrodes on the head, you affect, in theory, a small area of the brain right under the electrodes but it's already been shown that that effect can then multiply and spread throughout the nervous system even down to your spinal cord.

Soren: There's a theory out there. It's called the zero-sum theory of the brain that some people use as a framework for thinking about all this which is one part goes up and other part goes-- There's only so much juice in the brain. If you send juice one direction, there's less juice somewhere else.

Jad: Then, if you were enhancing one part, you're, by definition, diminishing another.

Soren: Maybe. To be honest--

Sally: There was definitely an after effect.

Soren: This is why I got so interested in this piece in the first place is because of what happened to her after the sniper training.

Sally: Driving down from LA to Carlsbad to go do this was an absolute nightmare. I hadn't driven in like a year because I've been living in London where I just do public transportation but on the way up, it's like, I hate to compare it to Mario Kart, but it's just this extremely pleasant experience. I feel I drove better that day than I ever drove before. It was very obvious where I could pass people without irritating them. I don't know. It's a weird memory, but I think I had more fun driving that day than I ever did since.

Soren: At some point, she realized it wasn't just about her driving ability.

Sally: I don't know how much I want to get in public on the radio, about being a bit anxious, [laughs] I guess that's not particularly controversial, probably all writers are riddled with anxiety but I have this constant struggle with all the little angry gnomes in my head. Populating my head and telling me all the things that I don't do right, and all the things that I've done wrong that day, they just keep this incredibly comprehensive tally of them [laughs] and then the ones who worry about the future, the ones who tell me, I'm going to be living in a cardboard box in a year, it's just like an amazing cacophony.

Soren: She says, "Sitting in that car"?

Sally: They were just completely turned off, I think, for a couple of days and it was really--

Soren: Really, for a couple of days?

Sally: For a couple of days and to tell you the truth, I was just this person that I hadn't experienced before and I thought, "Maybe this is the actual core person, who I am when all my baggage isn't just weighing on me," it was like somebody had wiped a really steamy window and I was just able to look at the world for what it was.

Soren: I was curious whether there's a connection there, to be a good performer of some task goes along with shutting down the parts of yourself that say, "I don't know, I don't think, maybe I can't, maybe I shouldn't," and there's actually a real connection between amping up one and tamping down the other.

Jad: It makes sense because if you're giving one circuit more power you might be taking away from other places, yes, it's funny, since you and I are just been on stage floor, one of the things I struggle with most during the performances is I'm sitting there, we're both sitting there, we've got our scripts, and I have this box of buttons.

I have to remember which buttons do what things and there's like the musicians, let's figure out where they come in and out and all of these things, they become competing voices, they become these little chattering gnomes that Sally puts it in my head and I'm like, wait, when does that come in? Where are we? It's not a good feeling.

Then there are other times where something happens, it's almost like a mode and suddenly, it's like, right there, I'm right with you, it's the easiest thing in the world to listen to what you're saying and respond instinctively and in the moment. They literally feel like different chemical modes, or maybe electrical modes, you know what I mean?

Robert: That's very interesting to me, because going back to the performance stuff, you can't really make it happen, I guess you could, I suppose, but it doesn't feel that way, it feels like it somehow--

Jad: It feels like it's a gift.

Soren: What happens when it's an expectation?

Sally: To tell you the truth, one of the really worrying things to me was afterward how much I craved doing it again, it felt like a drug with no side effects, I don't know if I'm going to get addicted to electricity [laughs] it seems unlikely but--

Robert: Got to get some man.

Sally: Shoplifting batteries. [laughs]

Soren: Someone licking them. In the supermarket corner and licking [unintelligible 00:18:39] batteries.

Jad: Thank you, Soren.

Soren: No problem. Thanks a lot to Sally Adee.

Robert: Okay, so time to go to a break, I'm Robert Krulwich.

Jad: I'm Jad Abumrad.

Robert: Stay tuned.

Ron: The world hit us, like you're hit with a bullet and we're like that can't be our son.

Jad: I'm Jad Abumrad

Robert: I'm Robert Krulwich.

Jad: This is Radiolab and our story today begins with a boy.

Robert: That boy is going to vanish not into thin air but to a place that we know very, very little about.

Jad: If you're the parent of that boy, what do you do if your child is falling away from everything, you know.

Robert: How do you find him?

Jad: How do you get him back?

Robert: Part of this tale we got from Ron Suskind, new wonderful book Life Animated and some of you may have heard it, some not.

Jad: Let's start where Ron started, for him it began around 1993.

Robert: It was an exciting time.

Cornelia: Well, we're going into ontro, for what is his last night in the crib.

Owen: I still can walk.

Robert: In 1993, the Suskind family decided to make a big move. Ron and his wife, Cornelia.

Cornelia: Cornelia Suskind.

Robert: And their two sons Walt and Owen.

Cornelia: Walter is about five and Owen is about two and a half.

Robert: They decide to relocate from Boston to Washington, DC.

Ron: I had the senior national affairs job at the journal.

Cornelia: Good night.

Ron: Say nighty night.

Owen: Night night.

Ron: A dream job.

Cornelia: I love you.

Ron: Lots of excitement.

Cornelia: Have a nice last night near Criby.

Robert: They make the move. As soon as they arrive in Washington.

Ron: We start noticing something's amiss.

Jad: Their youngest son, Owen, who to that point had been a totally normal chatty, almost three-year-old.

Ron: Sitting all over his markers.

Jad: Suddenly goes sideways.

Cornelia: Maybe the very first thing that happened was he stopped sleeping. He stopped eating. He was very fussy.

Robert: Initially, they figured, "Well, it's got to be the move."

Cornelia: Then we start losing eye contact, then he starts losing motor skills. He can't hold his cup, it's slipping out of his hand. His gait became very odd. He looked like a drunken sailor walking around the house. Then he stopped speaking bit by bit by bit.

Jad: This is all compressed into--

Cornelia: A few months.

Jad: A few months, really?

Cornelia: Yes.

Ron: What could have occurred? Could he have banged his head, ingested something toxic. First, he hit the regular pediatrician and he's gone. He sent us to a center. There was a woman there.

Jad: Who sits them down.

Ron: She says the word autism.

Jad: What did the word mean to you at that moment?

Cornelia: It meant Rain Man.

Ron: Dustin Hoffman. I'm a very good driver until we saw. We're like, "That can't be our son."

Cornelia: It was just terrifying.

Robert: Now, in reporting this story, we visited a school here in Manhattan called the Rebecca School. It's a really unique school for children with autism, other developmental delay. There's little kids in their age four all the way up to I think, even 21. Every kid that you meet in the school is different. Autism is a many, many flavored thing. The overwhelming sense you get walking the halls there is that, each of these kids is locked away a little bit. Just they don't know how to be with.

Kelsey Padgett and I, we got there during lunch. In one of the rooms. I don't know, maybe you should describe this.

Kelsey: Yes. We went to this one classroom where there was this one boy who really stood out. He was about six years old, and he had this big mop of black hair. He was just standing there at the table holding an apple--

Boy: I want to eat the apple.

Tina: You want to eat the apple?

Kelsey: Just sobbing.

Tina: Do you want to eat your apple?

Boy: No eat.

Tina: You don't want to eat the apple.

Kelsey: The director of the school, Tina McCourt, she was there. She just stayed with the boy and really tried to be there with him but there was nothing she could do.

Tina: There goes the apple.

Kelsey: It was hard to watch because you don't know how to help him.

Gil: That's a challenge. There's a kid who actually can't tell you what's upsetting to him.

Robert: That's Gil Tippy, the school's clinical director.

Gil: Could be that he actually doesn't know where he is in space, maybe. It's as if we were being thrown out of an airplane. You're just tumbling. You don't know where your body is. It's a thunderstorm. You only see things in flashes. Now, the world is totally frightening. It's totally overwhelming.

Cornelia: I do remember the drive home from that terrible day.

Ron: I blocked that out.

Cornelia: I just remember, you and I driving home in silence without Owen in the back. I just felt like, "There was no hope."

Jad: They had no idea if the Owen they knew was in there. Or, if he was just kind of lost to them, like gone. Now keep in mind, this was 1994. We knew even less about autism than we know now. We still have no idea what causes autism. Then the prevailing wisdom seemed to be that kids with autism, they couldn't feel emotion. They had no capacity to empathize with other people. This was way before the neuro diversity movement, actually right around the moment when autism was becoming a spectrum for the first time.

Ron: That's just happening in 1994, just starting.

Cornelia: Barely starting.

Ron: Yes, at that point--

Jad: Owen was about four, was he active or was he--

Cornelia: Yes, he was hyperactive, a lot of self-stimulatory behavior, hand flapping, running around.

Jad: Cornelia and Ron say that when they would call him, it was as if he didn't even hear them.

Ron: We're hoping he's hearing but he's not really responding so--

Robert: When you needed him to come to the table, would he come--

Cornelia: You would basically have to go and lead him by the hand or pick him up and bring him over and he was down to one word, which was juice, so the only thing he was doing was drinking juice for about a year.

Robert: Also, you know, there was the Disney movies.

Ron: He would sit for television entertainment or something.

Cornelia: He wouldn't sit for the whole movie for sure, but that would be the one thing that he would sit for quietly for periods because he didn't sleep, so at night, I was usually up with him all night thrashing around.

Robert: As Owen watched one Disney movie after another, after another, not sleeping at all that word juice, it seemed to expand just a little bit, he began to repeat the word.

Ron: Juice servers, juice servers, juicer servers--

Jad: Wait, what is he saying? Juice servers?

Ron: Juice servers.

Jad: Juice servers.

Robert: But you don't know first what that is?

Cornelia: No.

Ron: No, we think it's juice, I said, "Does he seem to want more juice?" She's like, "No, I gave him more juice he didn't seem to want it."

Robert: Ron says he would say that word over and over for weeks, and they had no idea what it meant until--

Ron: It's about a year and a month after the symptoms have started.

Jad: One night, all four of them are together in the living room.

Ron: We're watching the Little Mermaid.

Jad: At a certain point Owen, who's got the remote, he starts rewinding the movie back a little bit, to rewatch a scene.

Ron: It's typical, so Owen knows how to work the remote, well showed him how to do it and he took to that and he's rewinding the part where Ariel-

Ariel: I become human.

Ron: -our protagonist-

Ariel: I'll never be with my father and sisters again.

Ron: -wants to become human to get her man, Eric-

Ursula: That's right.

Ron: and the sea witch, Ursula, says, "It will cost you-

Ursula: Tough choices.

Ron: -and the price is-

Ursula: Your voice.

Ron: -your voice."

Ariel: My voice?

Ursula: You've got it sweet cakes.

Ron: All of a sudden Ariel and Ursula are having it out, and this part is rewind again, again, and Walt is like, "Oh and stop rewinding, just play the movie." After the third rewind, Cornelia says, "Oh, it's not juice, it's not juice, it's just," I said "What?" Just your voice. At which point I'm like a grab him [unintelligible 00:28:10] and I'm like "Just your voice, just your voice." He starts going "Just your voice, just your voice, just your voice" [laughs] Walter is jumping in the bed, crying and laughing and jumping--

Jad: Did you feel he choose that phrase for a reason?

Ron: That's of course, immediately what we thought.

Cornelia: He's trying to tell us something.

Jad: That he has things to say but he just can't say it, it's his voice, in other words--

Ron: He's in there.

Cornelia: He's in there because he's trying to talk to us.

Ron: We run to the doctor, a very trusted guy and he's like, "Sit down, let's talk." There's something called echolalia, it's echoing sounds, that their auditory processing, their ability to process sound, speech goes haywire and so they just repeat the sound. We're saying, "So he doesn't know what it means?" He's like, "Probably not."

Jad: Life goes on and years go by.

Ron: Where he's murmuring a lot of gibberish, we might be able to decipher from some movie, maybe. By six he's got three-word sentences, "I want juice," just one and a half-year-old speech, Corn is there full time 24/7.

Robert: Ron is working around the clock.

Ron: In a frenzy to pay for all the therapists and we're fighting it out basically.

Jad: They see tiny, tiny bits of progress, but no more breakthroughs.

Robert: Until.

Ron: Owen is about six and a half and Walt is nine, and Walter gets a little emotional on his ninth birthday.

Walt: I'm not sure maybe the anxiety of the moment, of the attention of it.

Jad: This is Walt Suskind.

Robert: How old are you now?

Walt: I'm 25.

Robert: In any case, Walt has his ninth birthday and his friends come over.

Cornelia: Then after the party, he's out in the hammock in the yard and he's crying a little bit and--

Ron: Owen walks in after Walter is emotional, and we're in the kitchen and he seems to look back and forth between the two of us like there's something he wants to say.

Robert: To this point Owen had only said three word sentences, but in this moment, according to Ron--

Ron: He looks at us and says, "Walter doesn't want to grow up like Mowgli, or a Peter Pan."

Robert: He says full sentences?

Ron: Full thing, whole thing.

Jad: Wow.

Ron: Literally, it was like a thunderbolt, a lightning bolt went through the kitchen. Owen runs off in some reverie, whatever and we look at each other like, "What was that?" This is his first complex sentence or thought that's been expressed and it's a subtle one, actually.

Jad: Because he's taking three different characters, two from a movie, one from real life, and he's putting them together. Ron is like, "I got to follow this." He goes up to Owen's room.

Ron: I see Owen on the bed, looking at a Disney book, and I see on the carpet are some of his puppets. In one of them is Iago from Aladdin. The plush toy which is the $98 one, that goes up to your elbow. I grab it and I put it on my arm right up to the elbow, and I crawl along in the rug, and I throw the bedspread over my head and just edge up to the edge of the bed and I push the puppet up through the crease in the bedspread.

Now they're face-to-face, Owen and Iago. I'm looking up through the crease, up my arm and I talked to him as Iago. Now this is an easy voice, it's Gilbert Gottfried's voice. Anyone can do this. I say, "Owen, Owen, Owen, how does it feel to be you?" He turns to the puppet like he's bumping into an old friend and he says, "Not good. I'm lonely." It was his voice.

Jad: Wow.

Ron: I say, "When did you and I become such good friends?" He says, "When I watched Aladdin and you made me laugh." We go back and forth like this for four or five more exchanges and then I hear Owen clears throat like [growls]. Like that. Then all of a sudden I hear him say back, "I love the way you foul little mind works."

Jad: He said what?

Jafar: I love the way your foul little mind work.

Ron: That's Jafar, the villain. Iago is the villainous sidekick to Jafar, the villain of Aladdin. That's the next line from Jafar. [crosstalk] He thinks we're in the movie.

Jad: You're inside.

Ron: Yes, he's asking for me to respond as Iago.

Robert: Did you know the next line?

Ron: I didn't know the next line. At that point I just jumped out from under the bedspreads and said, "Owen, what's going on?"

[music]

Jad: Now they felt like, "Okay, he is in there." Despite everything that they have been told about autism, Owen was in there and somehow these Disney characters were in there with him.

Ron: It doesn't take us long that, we start what we call the basement sessions where we say, "Let's see how far this can go."

Jad: A couple times a week--

Ron: We go down in the basement and start playing out scenes. Describe to these guys, what was the like when mom and I started doing voices and Walter.

Owen: Felt amazed.

Robert: Who was amazed? You were amazed or they were amazed?

Owen: I was amazed.

Robert: This is Owen Suskind. He's 23, now. Why were you amazed?

Owen: I was so surprised by my family. I could hear them respond better.

Jad: You're saying that when everybody was acting out the Disney movies, suddenly you could hear them better?

Owen: Right.

Jad: When people would talk to you, not in the Disney movies, what do you remember about how they sounded?

Owen: A little weird, gibberish and rubbish.

Jad: Do you remember how you felt?

Owen: A little worried.

Ron: You told mom once that you were scared.

Owen: I was scared.

Ron: Why did it feel good to watch them over and over again that you kept wanting to watch them over and over again? How did that feel to you?

Owen: It felt comforting.

Ron: Comforting.

Owen: It felt comforting.

Ron: Why?

Owen: Because it had helped me with reducing my autism.

Robert: How does a movie help a boy, in Owen's condition? Stay tuned and we'll attempt some explanations.

Jad: Hey, I'm Jad Abumrad.

Robert: I'm Robert Krulwich.

Jad: This is Radiolab.

Robert: We're going back to our story about a boy with a condition that nobody can quite pin down.

Jad: We just heard that Owen, when he watches Disney movies, he feels comforted in that somehow, the movie seems to dial down his autism. We're like, "Why would that be?" How could a Disney movie or any movie really make that much difference?

Simon: Can you hear me okay?

Robert: I can hear you pretty well. I'm just going to-- We ended up taking the question to this guy.

Simon: Simon Baron-Cohen.

Robert: He's a leading researcher in autism.

Simon: I'm the director of the Autism Research Center at Cambridge University.

Robert: Simon told us a couple of different things. First of all, he says that in the last few decades, our whole notion of what is happening in the mind of a child with autism has totally changed. We've sort of tossed out the Rain Man idea.

Simon: The idea that people with autism lack some inner life, I think that's completely false.

Jad: It's not necessarily that they can't feel emotion or empathy, he says not at all, it's often a decoding problem. Like they have trouble decoding all of the information that's coming in. Some studies have found that a lot of kids with autism literally have too many synapses in their brain so it might be that the world is just coming in too loud.

Simon: I think often people with autism will feel very lost and confused. There is little predictability in the social world. People come and go, they know two days are the same. People say things unexpectedly, they do things unexpectedly and people with autism seem to need a lot of predictability.

Jad: We spoke to Temple Grandin, the well-known author and autism advocate, and here's how she put it.

Temple: When I was a little kid I wanted to feel the nice feeling thing held but there was just too much overwhelming stimulation, loud sounds hurt my ears, like the volume control on touch and hearing was way, way, way turned on.

Jad: As Temple Grandin explained it to us, a kid with autism gravitating to something like bus schedules, or knowing every single fact about every dinosaur that ever lived, that is just a way to slow things down and make the world predictable, so that it happens the same way every time and as Simon Baron-Cohen puts it in Owens case, he had these Disney movies that he could play over and over and over and over.

Simon: Then the fact that it's not just repetition, but it's repetition about human action.

Aladdin: Jasmine, where are you?

Jasmine: Out in the Menagerie, hurry.

Simon: Now that creates a kind of structure to be able to look at human behavior. In the real world, there's no opportunity to rewind the movie whereas in the world of movies, you can watch the same Disney cartoon 100 times or 1,000 times and you could almost go frame by frame like a literary critic, or a film critic, you could really analyze the action to understand, "Okay, that's what happened and that's what caused him to do what he did."

Jad: Add to that.

Geraldine: The element of music.

[music]

Jad: We spoke with Professor Geraldine Dawson, a neuroscience professor at Duke who guessed that maybe it's not just the repetition that made the difference, but the repetition with music.

Geraldine: One of the things that we've learned from neuroscience is that music activates emotional centers in our brain and in fact, it's pretty reliable, that certain kinds of music make us feel frightened, make us feel happy, make us feel worried, and so forth.

Jad: Now, she says when scientists have done brain scans of kids with autism, they found--

Geraldine: That during normal interactions, people with autism don't necessarily activate those emotional centers of the brain, areas like the amygdala, but during the experience of music, those areas of the brain did become activated in a way that was very much like a typical person.

Jad: It might be that while Owen was forensically examining these moments of Disney movies, it was the Disney music that was binding those moments to feelings so he could know like, "Oh, when a person looks like that, that's when they're happy, when a person looks like that, that's when they're sad." However it works, Simon Baron Cohen thinks is at least plausible.

Simon: That he's using the movie as a scaffold, to make sense of the much greater complexity of natural life.

Robert: That's what got to Ron Suskind.

Ron: Like, wow, this is a whole new planet here.

Robert: That maybe this Disneyish therapy that they use with Owen, might be a whole new approach to treating kids with autism.

Ron: Instead of the one size fits all model of sit in the class and here are the things you're supposed to know, to be a working member of society. Instead, it's like go with their passion. Follow them in there. It's a pathway. The brain finding a way to get to what people need, which is interaction and emotional wholeness. I want you to sing the song for them.

Owen: You dream about going up there

But that is a big mistake.

Robert: Over the years sometimes down in the basement with the family or sometimes even in doctor's offices, Owen started to improvise. He'd go off script and use the characters he knew so well, to explain how he was feeling.

Owen: Under the sea,

[unintelligible 00:41:18]

Robert: As we were thinking about all this and asking ourselves, if this works with Disney movies, which are very emotional and clear, how do you do this with paper clips or bus schedules? As the questions kept coming, we ran into inevitably a counter reaction to Ron's story and this we didn't expect.

Dave: The story is great. It's a wonderful story. Onto a danger with a book, with any book, including life animated is that it's going to give the impression to a lot of people that this is the answer.

Robert: That's psychologist and journalist Dave Royko, and he warned us to like--

Dave: With autism--

Robert: We still don't really know much. We don't have yet a body of established science and all the anecdotes you're hearing, they're just anecdotes.

Dave: If you've known one person with autism, you've known one person with autism.

Robert: That he says is really all you can say. To take one person's experience and generalize on it, it's a mistake. A case in point, his son Ben.

Dave: Ben is turning 21 years old today.

Jad: Oh, my God, happy birthday to him.

Dave: Thanks. Ben is never going to be able to live independently. He's never going to have what anyone would consider a full and normal life.

Jad: Ben has severe autism and is now living in an assisted living facility. He was diagnosed around the same age as Owen, same basic symptoms.

Dave: Lack of eye contact.

Jad: Sudden loss of speech.

Dave: Fascination with spinning wheels, with ceiling fans, the whole package.

Jad: Dave says he and his wife tried every therapy they could afford, and a whole lot they couldn't. Ben never had any of those big breakthroughs. Instead, even as a teenager.

Dave: He would hit and he would scratch and he would bite and he would punch and he would kick.

Jad: Honestly, the reason we ended up calling Dave is because he wrote a review of Ron's book where he said, "Basically, it's a great book but it's just one more story of a triumphant happy ending." That is not the norm.

Dave: For many, many people who experience autism, you don't have happy endings. That's a sad fact for many of these families. We're not expecting in our life, a happy ending for Ben.

Raun: People seem to believe that it's dangerous for parents to have too much hope because what if they really think it's possible for their child to progress a huge amount or recover and then their child doesn't? We have the other concern.

Robert: That's Raun Kaufman of the Autism Treatment Center of America.

Ron: We find that we're not afraid of so called false hope. We're more concerned about false pessimism.

Robert: Here's why he says that. In 1981, Raun's dad, Barry [crosstalk] he sits down on a local TV show with a very young Oprah Winfrey, and he describes his experience.

Barry: We had a child who was diagnosed as incurably ill or hopelessly ill, something called autism.

Robert: He tells how at a really young age, a year and a half old, his son began to regress and began to flap hands, lose eye contact, rock back and forth. Then one day, he and his wife decided, "You know what? We're going to just sit down on the bathroom floor right next to him. We're going to rock back and forth just like him." He explains that they did this, over and over and over, hour after hour, until one day his son turned his head.

Barry: He actually looked at us. It took 900 hours before he ever gave us eye contact on his own. When he looked at us, we cheered. We cried because that was really big for us and so somebody else might look at us and say, "You're crazy." But we're not. We just got this little boy, took us 900 freaking hours, but he just looked at us for three seconds, my God. He went from that to a little boy now who functions on a near-genius level who talks, is communicative, is loving, and is embracing.

Robert: That little boy is Raun.

Raun: For me, it just felt like my mother was loving me and enjoying me, and playing with me.

Robert: Nowadays, in interviews, Raun, seems to say that maybe his parents cured him of autism.

Raun: I actually have never used the word cure. I don't use that in my lectures, YouTube videos. No one's ever actually heard me say that. What I do say is full recovery, which is essentially the same thing.

Robert: Whatever you call it, armed with this heroic story, Raun and his dad Barry now run an autism treatment program that they call Son-Rise, s-o-n Rise.

Barry: People come here from all around the world and say, "My child is severely autistic." I will smile and I'll put out my hand and I'll shake their hand and I'll say, "I am so excited for you. Wow, you are so blessed," and you know what they'll start to do? They'll cry. I'll say, "Why are you crying?" "No one ever said that to me."

Jad: You really say that to parents with severely autistic kids, severely?

Barry: I say it all over the world.

Robert: [chuckles] Last year, there was a woman named Kelli Stapleton, who was a fairly prominent autism blogger, and I got to know Kelli a bit.

Jad: She has a daughter with autism. One day when her daughter was 14--

Robert: She locked herself in a van with a couple of charcoal burners and tried to commit suicide with her autistic daughter. You see that in the world of autism more than, I can't think of any other place you see it.

Jad: Dave, believes that one of the reasons you see so many suicides in this community, and by the way, there's a huge debate about this on the web. He believes that one of the reasons you see it so much is that all these success stories seem to say to parents like him that as hard as it can be and it can be really, really hard, you're not trying hard enough.

Dave: It's depressing. Autism, it destroys lives, is what it does in our definition of it.

Jad: That's one of the things that makes it very, very confusing for people outside the community to describe what's going on because you now have the situation where obviously all autism is a spectrum. You have all of these different kids described by the same word, making things even more confusing.

Temple: You take a child when they're two or three.

Jad: That's Temple Grandin, again.

Temple: You're going to have two kids that look real severe and I looked real severe when I was three, real, real severe. Then you work on these kids, lots of one-on-one therapy, and one kid you pull them out of it and the other one you're not able to pull them out of it and they both look the same at age three.

Jad: If a lot of these kids start out with the same set of symptoms but they end up in vastly different places, no one knows why, then as a parent, you really have no idea what is going to happen or how much you can dare to hope.

Cornelia: Notions of what could be up the road or what should be now if they pop into my head which is rare I dismiss them. I have absolutely no idea because we have been down so many roads that were disappointing.

Jad: After Owen's Disney basement sessions had really taken off and the Disney therapy as it were, seemed to be working and Owen was getting better and better and better.

Robert: Things took a turn and not for the good.

Jad: Remind me how old he is at this point?

Cornelia: 14.

Ron: 14 yes, 9th grade [crosstalk]

Cornelia: It was 10th grade.

Ron: Oh, right. Oh, was it?

Cornelia: Yes.

Ron: That's right.

Jad: What happened?

Ron: We didn't know what was happening. We just saw over the months that Owen was really out of sorts.

Jad: He got quiet, withdrawn, basically, stopped doing Disney. Over this period he's losing a lot of weight.

Ron: He's not sleeping.

Cornelia: The three of us were scratching our heads saying, "What is going on with Owen? He is really moving into a bad place." I was actually worried that he was becoming schizophrenic.

Walt: Yes, I still think about that whole scenario all the time because we knew something was wrong with Owen, and we couldn't get it out of him.

Robert: This is Owen's older brother Walt again and he says when he pick up Owen from school--

Walt: He was just a shell of himself. I'd pick him up he'd talk to himself in the car and he'd be, "No, it's not true," or something under his breath.

Robert: Then--

Ron: At one point I overhear him in a conversation with Phil, the sidekick of Hercules. Phil is, "Listen, kid. You can take him. You got to stand up for yourself." That thing that Owen was saying. I didn't know where to fit it in.

Robert: Ron says it seemed like Owen was trying to psych himself up for something. He sat down with Owen on the couch and he grilled them for an hour until eventually, Owen told him about his music class at school.

Cornelia: There are two kids in this class who are ED kids, emotionally disturbed kids. They're not on the autistic spectrum. Socially, they're very on target. They, basically, torment and terrorize him for six months of that school year, unbeknownst to us and unbeknownst to the school.

Robert: What did they do?

Cornelia: They sat on either side of him and basically said, "We're going to kill you. We're going to kill your parents."

Owen: Those two bullies lied and bullied me badly.

Ron: Right then, you were in a very bad spot. You couldn't tell me, your mom or anyone because what happened? The bully said what?

Owen: "Burn your house down."

Ron: If what?

Owen: "If you tell."

Cornelia: Owen was so literal as are so many autistic kids. He believed that they literally meant they were going to come and burn his house down.

Ron: Then there's an extraordinary moment in the middle of this where Walter picks him up, Owen starts to think to go through a calculus. The bully said, "If you tell your parents about what we said, we'll burn your house down," but they said nothing about your brother. He sees an opening.

Owen: Yes.

Jad: Did you tell him?

Owen: No, I didn't. No, I didn't.

Jad: Why not?

Owen: I'm afraid he would beat them up. I didn't want that.

Ron: Walt, at this point, is a football player and he looks like Hercules to Owen. Owen later describes to us this thinking that if he tells Walter, that Walter will hurt the kid and maybe kill the kid. In Disney, none of the heroes actually kill any of the villains.

Owen: No.

Robert: Walter was the hero. You were afraid he was going to do what?

Owen: Kill. It's wrong.

Robert: Yes.

Walt: I just remember finding out and it was a combination of rage and helplessness. I really wanted to kill that kid. I mean, I'm his protector.

Ron: In a way, Walter was worried about protecting you in that time?

Owen: Yes.

Ron: In a way, it was--

Owen: Me.

Ron: That was doing what?

Owen: Protecting myself.

Ron: Who else?

Owen: My brother.

Ron: Right, and Walt.

Owen: Walt.

Ron: You were protecting Walter.

Jad: Here, you have this moment where it looked like Owen was sliding backwards but according to Ron, it might have actually been his greatest leap forward. His most profound moment of empathy.

Robert: These days, Owen is 23, just turned 23 a few months ago. Are you in love right now?

Owen: Yes, I am with the girl of my dreams Emily. She and I graduated from [unintelligible 00:53:38] last month.

Cornela: This has been a three-year program called "Getting Ready for the Outside World".

Ron: Grow.

Robert: Yes.

Jad: He'll be graduating from the entire program?

Cornelia: Yes and off on his own.

Owen: Now, me, her and our other two friends, John and Julie, also go to school, are all going to move and live a life in [unintelligible 00:54:00].

Ron: What is life?

Owen: Living independently forever.

Ron: What is it? What kind? Can you describe it?

Owen: An adult independent living program?

Robert: As we were talking, it was hard not to wonder how independent will Owen be because that's the question that's in front of the [unintelligible 00:54:17], especially Walt.

Walt: I think what scares me sometimes is just having to go it alone in a lot of ways. I'll just have to be ready to take these things on.

Cornelia: We talked to him about everything, about our will and who will be Owen's, how he figures into everything.

Walt: All the efforts we're trying to do and have been doing for all this time is to-- One of our favorite movies is The Jungle Book because Mowgli, it's his quest with his animal sidekicks to get him to the man village. What we've been doing all this time and what we're still doing and we do every day is to bring Owen closer and closer to that man village that we all inhabit. There's so much hope in that and as he progresses you feel so good about it, but at the same time, that's not to say he'll ever totally get there. As hard as we might try, we may not get him there, but that doesn't mean you leave him on the path, you stay with him on the path even if it's a never-ending path.

[pause 00:55:39]

Robert: Thanks to Ron Suskind, Cornelia Suskind, Walt Suskind, Owen Suskind, the whole Suskind family, and Mr. Suskind's book, Ron's book is called Life Animated.

Jad: Thanks also to Jonathan Freeman, Lane Hall, Steve Silberman, Pamela De Devore, and Kelsey Padgett.

Robert: Sincerely, thanks also to Gil Tippy and to Tina McCourt at the Rebecca School and to the whole staff at that school, they're all heroes in my mind too, so there you go.

Jad: There you go. I'm Jad Abumrad.

Robert: I'm Robert Krulwich.

Jad: Thanks for listening.

 

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