Transcript

[RADIOLAB INTRO]

RON SUSKIND: The word hit us. Like you're hit with a -- with a bullet. And we're like, "That cannot be our -- that cannot be our son."

JAD ABUMRAD: I'm Jad Abumrad.

ROBERT KRULWICH: I'm Robert Krulwich.

JAD: This is Radiolab. And our story today begins with a boy.

ROBERT: And that boy is going to vanish. Not into thin air, but to a place that we know very, very little about.

JAD: And 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: So part of this tale we got from Ron Suskind's new wonderful book Life Animated. And some of you may have heard it, some not.

JAD: Let's start where -- where Ron started. For him, it began around 1993.

RON SUSKIND: And -- and it was an exciting time.

CORNELIA SUSKIND: Well, we're going into Owen's room for what is his last night in the crib.

OWEN SUSKIND: I still can't -- I still can't watch.

CORNELIA SUSKIND: You still can't watch it? Can you tell us about your crib, Owen? Do you like your crib?

OWEN SUSKIND: Yeah.

CORNELIA SUSKIND: Yeah.

RON SUSKIND: Do you know where you're sleeping tomorrow? What kind of bed are you and Walter going to sleep in?

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

CORNELIA SUSKIND: Cornelia Suskind.

ROBERT: And their two sons, Walt and Owen.

CORNELIA SUSKIND: Walter is about five, and Owen is about two-and-a-half.

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

RON SUSKIND: You know, I had this senior National Affairs job at the Journal.

CORNELIA SUSKIND: Good night.

RON SUSKIND: Say nighty-night.

OWEN SUSKIND: Night-night.

RON SUSKIND: Kind of a dream job.

CORNELIA SUSKIND: I love you.

RON SUSKIND: Lots of excitement.

CORNELIA SUSKIND: Have a nice last night in your cribby.

ROBERT: So they make the move. And as soon as they arrived in Washington ...

RON SUSKIND: We start sort of noticing something's amiss.

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

RON SUSKIND: He's hitting all of his markers.

JAD: Suddenly goes sideways.

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

ROBERT: Initially, they figured well, it's got to be the move.

CORNELIA SUSKIND: And 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, and he was sort of looked like a drunken sailor walking around the house. And then he stopped speaking bit by bit by bit.

JAD: And this is all compressed into ...

CORNELIA SUSKIND: A few months.

JAD: A few months. Really?

CORNELIA SUSKIND: Yeah.

RON SUSKIND: What could have occurred? Could he have banged his head? Ingested something toxic? You know, first you hit the regular pediatrician, and he's going, "Um." And he sent us to a center. And there was a woman there.

JAD: Who sits them down.

RON SUSKIND: And she says the word autism.

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

CORNELIA SUSKIND: It meant Rain Man.

RON SUSKIND: Dustin Hoffman. "I'm a very good driver." Until we saw. And we're like, "That cannot be our -- that cannot be our son."

CORNELIA SUSKIND: You know, it was just terrifying.

ROBERT: Now, in reporting the story we ended up going off in a variety of different directions. But we did visit one place where we got a glimpse, just a hint of -- of what parents like Ron and Cornelia must have felt back then. We visited a school here in Manhattan called the Rebecca School. It's a really unique school for children with autism, other developmental delays. There's little kids in there 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. But the overwhelming sense you get walking the halls there is that each of these kids is kind of locked away a little bit. Just -- they don't know how to be with. Like Kelsey Padgett and I, we got there during lunch and in one of the rooms -- I don't know. Maybe you should describe this.

KELSEY PADGETT: Yeah, there was this -- 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 -- this big mop of black hair. And he was just standing there at the table holding an apple. And just sobbing.

TINA MCCOURT: You don't want to eat the apple?

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

TINA MCCOURT: There goes the apple! You don't want to sing with him? No?

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

GIL TIPPY: So that's the challenge, right? There's a kid who actually can't tell you what's upsetting to him, right?

ROBERT: That's Gil Tippy, the school's Clinical Director.

GIL TIPPY: Could be that he physically -- he actually doesn't know where he is in space, maybe. It's as if we were being thrown out of an airplane, right? You're just tumbling, you don't know where your body is. It's a thunderstorm, so you only see things in flashes, right? So now the world is totally frightening. It's totally overwhelming.

CORNELIA SUSKIND: I mean, I do remember the drive home from that -- from that terrible day.

RON SUSKIND: I don't -- I've blocked that out. What did ...?

CORNELIA SUSKIND: Well, just -- I mean, I just remember, you know, you and I driving home in silence with Owen in the back. And I just felt like, you know, there was no -- there's no hope.

JAD: Like, 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. But 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 neurodiversity movement. Like, actually right around the moment when autism was becoming a spectrum for the first time.

RON SUSKIND: That's just happening in 1994. Just starting.

CORNELIA SUSKIND: Barely starting.

RON SUSKIND: Yeah, at that point ...

JAD: Owen was about four.

JAD: Was he active or was he ...?

CORNELIA SUSKIND: Yeah, he was very -- he was hyperactive. A lot of self-stimulatory behavior, you know, hand flapping, running around.

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

RON SUSKIND: We're hoping he's hearing, you know? But he's not really responding.

ROBERT: Well, when you needed him to come to the table or -- would he come ...?

CORNELIA SUSKIND: You would basically have to go and lead him by the hand and -- or pick him up and bring him over.

JAD: Huh.

CORNELIA SUSKIND: And he was down to one word, which was juice. So the only thing he was doing was drinking juice for about a year.

RON SUSKIND: And also, you know, there was the Disney movies.

ROBERT: So he would sit for -- he would sit for -- for television entertainment of some ...

CORNELIA SUSKIND: He wouldn't sit for the whole movie for sure, but he would -- that would be the one thing that he would sit for quietly for periods.

[CLIP DISNEY MOVIE]

CORNELIA SUSKIND: Because he didn't sleep. So at night, I was usually up with him all night thrashing around.

ROBERT: And 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 SUSKIND: Juicervose, juicervose, juicervose.

JAD: Wait, what was he saying? Juicervose?

RON SUSKIND: Juicevose.

JAD: Juicervose.

ROBERT: But you don't know at first what that is.

RON SUSKIND: No.

CORNELIA SUSKIND: No.

RON SUSKIND: No, we think it's juice. Cornelia's like -- I said, "Does he seem to want more juice?" And she's like, "No. I gave him more juice, he didn't seem to want it.

ROBERT: And Ron says he would say that word over and over for weeks, and they had no idea what it meant. Until ...

RON SUSKIND: 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 SUSKIND: And we're watching The Little Mermaid.

[CLIP LITTLE MERMAID]

JAD: And a certain point, Owen who's got the remote, he starts rewinding the movie back a little bit to re-watch a scene.

RON SUSKIND: It's typical. So Owen knows how to work the remote. Walt kind of showed him how to do it and he took to that. And he's rewinding the part where Ariel ...

[CLIP ARIEL: "I've become human."]

RON SUSKIND: Our protagonist.

[CLIP ARIEL: "I'll never be with my father or sisters again."]

RON SUSKIND: Wants to become human to get her man, Eric.

[CLIP SEA WITCH: "That's right!"]

RON SUSKIND: And the Sea Witch, Ursula says, "It will -- it will cost you."

[CLIP SEA WITCH: "Life's full of tough choices."]

RON SUSKIND: And the price is ...

[CLIP SEA WITCH: "Your voice."]

RON SUSKIND: Your voice.

[CLIP ARIEL: "My voice?"]

[CLIP SEA WITCH: "You've got it sweetcakes."]

RON SUSKIND: And all of a sudden, Ariel and Ursula are having it out.

[CLIP SEA WITCH: "Come on, you poor unfortunate soul."]

RON SUSKIND: And this part gets rewound again.

[CLIP SEA WITCH: "It won't cost much. Just your voice."]

RON SUSKIND: Again.

[CLIP SEA WITCH: "It won't cost much. Just your voice."]

RON SUSKIND: And Walt's like, "Owen, stop rewinding. Just play the movie."

[CLIP SEA WITCH: "It won't cost much. Just your voice."]

RON SUSKIND: But after the third rewind ...

[CLIP SEA WITCH: "Just your voice."]

RON SUSKIND: Cornelia says, "Ah! It's not juice. It's not 'juice,' it's 'just.'"

JAD: Oh!

RON SUSKIND: I said, "What?" "Just your voice."

[CLIP SEA WITCH: "Just your voice."]

RON SUSKIND: At which point I'm, like -- I grab Owen by the shoulders and I'm like, "Just your voice! Just your voice!" And he starts going, "Juicervose! Juicervose! Juicervose!" And Walter starts jumping in the bed, crying and laughing and jumping.

JAD: Did you feel like he chose that phrase for a reason?

RON SUSKIND: Oh, that's what we -- that's of course immediately what we thought.

CORNELIA SUSKIND: He's trying to tell us something.

JAD: That, like, he has things to say, but he -- he just can't say it. It's his voice. In other words ...

RON SUSKIND: He's in there.

CORNELIA SUSKIND: He's in there, because he's trying to talk to us.

RON SUSKIND: So we run to the doctor, a very trusted guy, and he's like, you know, "Sit down. Let's talk." And he says it's something called echolalia. It's echoing sounds. That their auditory processing, their ability to process sound, speech ...

CORNELIA SUSKIND: Language.

RON SUSKIND: ... goes haywire. And so they just repeat the sound. And we're saying, "So he doesn't know what it means?" And he's like, "Probably not. Echolalia. It's what it sounds like: 'echo' -- what it sounds like 'echo.'" I said, "Like a parrot." They're like, "Yeah. Yeah, a parrot." So we go from Helen Keller to the pet store parrot.

JAD: Life goes on, and years go by ...

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

ROBERT: Ron's working around the clock.

RON SUSKIND: In a kind of 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 SUSKIND: Owen's about six-and-a-half and Walt is 9. And Walter gets a little emotional on his ninth birthday.

WALTER SUSKIND: I'm not sure. Maybe the anxiety of the moment, of the attention of it.

JAD: This is Walt Suskind.

ROBERT: And how old are you now?

WALTER SUSKIND: I'm 25.

JAD: Your voice is so much deeper than I imagined it would be.

WALTER SUSKIND: People usually, after like 10 minutes, if it's their first time meeting me, ask if I'm faking my voice. And I have to assure them this is not an affect. This is how I sound.

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

CORNELIA SUSKIND: And then after the party, he's out in the hammock in the yard, and he's kind of crying a little bit. And ...

WALTER SUSKIND: Birthdays was -- I don't know, they were just kind of strange days for me. Like, sensory overload in a way.

RON SUSKIND: Well, Owen walks in after Walter is emotional. And we're in the kitchen, and he seems to kind of look back and forth between the two of us in, 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 SUSKIND: He looks at us and says, "Walter doesn't want to grow up, like Mowgli or a Peter Pan."

ROBERT: He said full sentences.

RON SUSKIND: Full thing. Whole thing.

JAD: Wow!

RON SUSKIND: I mean, literally it was like a thunderbolt, a lightning bolt went through the kitchen. And Owen goes -- runs off in some, you know, reverie, whatever. And we look at each other, and, like, the -- what was that? You know, 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. So Ron is like, "I gotta follow this." So he goes up to Owen's room ...

RON SUSKIND: And I see Owen on the bed looking at a Disney book. And I see on the carpet are some of his puppets, and -- and one of them is Iago from -- from Aladdin. The plush toy, you know, which is the $98 one that goes up to your elbow. And I grab it and I put it on -- on my arm right up to the elbow, and I crawl along on the rug and I throw the bedspread kind of 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. And so now they're face-to-face, Owen and Iago. And I'm looking up through the crease, sort of up my arm, and I talk to him as Iago. Now, this was an easy voice. It's Gilbert Gottfried's voice. I mean, anyone can do this. I say, "So, Owen, Owen, Owen, how -- how does it feel to be you?" And he turns to the puppet like he's bumping into an old friend.

JAD: Hmm.

RON SUSKIND: And he says, "Not good. I'm lonely." And it was his voice.

JAD: Wow!

RON SUSKIND: And so I say, "So when did -- when did you and I become such good friends?" And he says, "When I watched Aladdin and you made me laugh." And we go back and forth like this for four or five more exchanges. And then I hear Owen clear his throat. Like [CLEARS THROAT], like that. And then all of a sudden I hear him say back, "I love the way your foul little mind works."

JAD: He said what?

[CLIP ALADDIN: "I love the way your foul little mind works."]

RON SUSKIND: That's Jafar, the villain. Iago's the villainous sidekick to Jafar, the villain of Aladdin.

JAD: Oh!

RON SUSKIND: That's the next line from Jafar.

JAD: But you'd slipped into a script.

ROBERT: You're in the movie.

JAD: You're -- you're inside.

RON SUSKIND: Yeah, he's asking for me to respond as Iago.

ROBERT: Did you know the next line?

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

JAD: So now they felt like okay, he -- he is -- he is in there. I mean, despite everything that they had been told about autism, Owen was in there, and somehow these Disney characters were in there with him.

RON SUSKIND: It doesn't take us long that, you know, we start what we called the basement sessions, where we'd say, "Well, let's see how far this can go."

JAD: A couple times a week ...

RON SUSKIND: We'd go down in the basement and start playing out scenes. And we'd do it. The first time we do it with the Jungle Book, which is a movie he was into at that point.

JAD: And then ...

RON SUSKIND: 101 Dalmatians.

WALTER SUSKIND: Beauty and The Beast.

RON SUSKIND: Peter Pan. Sword in the Stone.

WALTER SUSKIND: We -- we kind of ran the gamut. I mean, pretty much we'd watch any and every Disney movie there was.

RON SUSKIND: What -- describe to these guys, what was it like when Mom and I started doing voices and Walter?

OWEN SUSKIND: Felt amazed. Felt amazed.

ROBERT: Who was amazed? You were amazed, or they were amazed?

OWEN SUSKIND: I was amazed.

ROBERT: This is Owen Suskind. He's 23 now.

RON SUSKIND: Why were you amazed?

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

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

OWEN SUSKIND: Right.

ROBERT: Huh.

JAD: So when people would talk to you not in the Disney movies, do you -- what do you remember about how they sounded?

OWEN SUSKIND: A little weird.

JAD: Yeah?

OWEN SUSKIND: Gibberish and rubbish.

JAD: Huh. Do you remember how you felt?

OWEN SUSKIND: A little worried.

RON SUSKIND: You told Mom once that you were scared.

OWEN SUSKIND: I was scared.

RON SUSKIND: 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 SUSKIND: It felt comforting.

RON SUSKIND: Comforting?

OWEN SUSKIND: It felt comforting.

RON SUSKIND: Why?

OWEN SUSKIND: Because it would help me with reducing my autism.

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

CANDICE: This is Candice, currently calling from her bicycle. Radiolab is supported in part by the National Science Foundation, and by Alfred P. Sloan Foundation, enhancing public understanding of science and technology in the modern world. More information about Sloan at www.sloan.org. Thank you.

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JAD: Hey, I'm Jad Abumrad.

ROBERT: I'm Robert Krulwich.

JAD: This is Radiolab. And today, a story about a kid named Owen and a condition that no one can quite pin down. Now we just heard that Owen, when he watches Disney movies, he feels comforted, and that somehow the movie seems to dial down his autism. We were like, why would that be? How could a Disney movie -- or any movie, really -- make that much difference?

SIMON BARON-COHEN: Can you hear me okay?

ROBERT: I can hear you pretty well. I'm just ...

ROBERT: We ended up taking the question to this guy.

SIMON BARON-COHEN: Simon Baron-Cohen.

ROBERT: He's a leading researcher in autism.

JAD: And yes, he is the cousin of this guy.

[CLIP SACHA BARON COHEN: "This is my wife."]

SIMON BARON-COHEN: And I'm the director of the Autism Research Centre at Cambridge University.

ROBERT: And 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 BARON-COHEN: 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. I mean, 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 BARON-COHEN: I think often people with autism feel very lost and confused. There's so little predictability in the social world. You know, people come and go. They -- no 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 GRANDIN: When I was a little kid, I wanted to feel the nice feeling of being held, but there was just too much overwhelming stimulation. You know, loud sounds hurt my ears, like the volume control on touch and hearing was way, way, way turned on. And one of the reasons why I withdrew into things like dribbling sand through my hands is I could then shut out the hurtful sound.

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 Owen's case, he had these Disney movies that he could play over and over and over and over.

SIMON BARON-COHEN: And then the fact that it's, you know, it's -- it's not just repetition, but it's repetition about human action.

[CLIP ALADDIN: "Jasmine. Where are you?" "Out in the menagerie. Hurry!"]

SIMON BARON-COHEN: You know, that creates a kind of structure to be able to look at human behavior. You know, 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 a hundred times or a thousand 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 -- that's what caused him to do what he did.

JAD: Add to that ...

GERALDINE DAWSON: The element of music.

JAD: We spoke with a 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 DAWSON: 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 DAWSON: That during kind of 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, the -- those areas of the brain did become activated in a way that was very much like a typical person.

JAD: So it might be that, while Owen was sort of forensically examining these moments of Disney movies, it was the Disney music that was binding those moments to feelings so we 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 it's at least plausible.

SIMON BARON-COHEN: That he's using the movie as a scaffold to make sense of the much greater complexity of natural life.

ROBERT: And that's what got to Ron Suskind.

RON SUSKIND: Like wow, this is a whole new planet here!

ROBERT: That maybe this Disney-ish therapy that they use with Owen might be a whole new approach to treating kids with autism.

RON SUSKIND: Instead of the one-size-fits-all model of sit in the class and hear 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 -- it's a pathway. The brain finding a way to get to what people need, which is interaction and emotional wholeness.

RON SUSKIND: Here. I want you to sing the song for them.

OWEN SUSKIND: [singing]

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 -- he'd go off script and use the characters he knew so well to explain how he was feeling.

OWEN SUSKIND: [singing] Under the sea!

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

DAVID ROYKO: The story is great. It's a wonderful story. But the fact is most -- I mean, the 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. You know, it's kind of like ...

ROBERT: That's psychologist and journalist David Royko. And he warned us that, like ...

DAVID ROYKO: ... with autism ...

ROBERT: We still don't really know much, and we don't have yet a body of established science. And all the anecdotes you're hearing? They're just anecdotes.

DAVID ROYKO: 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. And to take one person's experience and generalize on it? It's a mistake. A case in point, his son Ben.

DAVID ROYKO: Ben is turning 21 years old today.

JAD: Oh, my God! Happy birthday to him.

DAVID ROYKO: Thanks. And you know, Ben is never going to be able to live independently. He's never going to have what anyone considered -- 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.

DAVID ROYKO: Lack of eye contact.

JAD: Sudden loss of speech.

DAVID ROYKO: Fascination with spinning wheels, with ceiling fans, the whole -- the whole package.

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

DAVID ROYKO: He would hit and he would scratch and he would bite and he would punch and he would kick. Honestly, I was always afraid when Karen and I would end up having to go to the emergency room for some reason that, you know, if they saw her arms that they would arrest me, because they would think I was some horribly abusive person. Because her arms were nothing -- they were covered with -- with scabs and scars and scars on scars, and on top of that, you know, there'd be the crap.

JAD: Like -- like [expletive]?

DAVID ROYKO: Like [expletive] in his pants. Yeah I mean, he's -- he was not -- well, you know, I hate to say it, but here we are on his 21st birthday and he's still not 100% reliable when it comes to toileting.

JAD: And 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. And that is not the norm.

DAVID ROYKO: For many, many people who experience autism, you don't have happy endings. I mean, that's -- that's the sad facts for many of these families. And we're not expecting in our life a happy ending for Ben.

RAUN KAUFMAN: People seem to believe that -- 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.

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

[CLIP OPRAH SHOW]

ROBERT: And here's why he says that. In 1981, Raun's dad Barry Kaufman, he sits down on a local TV show with a very young Oprah Winfrey, and he describes his experience.

BARRY KAUFMAN: Okay, 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. And then one day, he his wife decided, "You know what? We're going to just sit down on the bathroom floor right next to him, and we're going to rock back and forth just like him." And he explains that they did this over and over and over, hour after hour, until one day his son turned his head ...

BARRY KAUFMAN: ... and 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. 'Cause 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. It took us 900 friggin' hours, but he just looked at us for three seconds. My God!

[CLIP NARRATOR: "And 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: And that little boy is Raun.

RAUN KAUFMAN: 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 KAUFMAN: I -- 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 his heroic story Raun and his dad Barry now run an autism treatment program that they call Sonrise. S-O-N-rise.

RAUN KAUFMAN: People come here from all around the world and they'll say, "My child is severely autistic." And 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. And I'll say, "Why are you crying?" "No one ever said that to me."

JAD: You really say that to parents with a severely, like -- severely autistic kids? Severely.

RAUN KAUFMAN: I say it all over the world.

DAVID ROYKO: [laughs] You know, last year there was a woman named Kelly Stapleton who was a fairly prominent autism blogger. And I got to know Kelly a bit.

JAD: She has a daughter with autism. And one day when her daughter was 14 ...

DAVID ROYKO: She locked herself in a van with a couple charcoal burners and -- 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. But 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.

DAVID ROYKO: It's depressing. You know, a new bumper sticker, you know, that's shown up that autism is awesome. And awesome's spelled like a-u-s-ome, like similar to autism. No, autism, it destroys lives, is what it does in our definition of it.

JAD: And 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 this situation where obviously autism is a spectrum, and so you have all of these different kids described by the same word. Making things even more confusing ...

TEMPLE GRANDIN: Do you take a child one when they're two or three ...

JAD: That's Temple Grandin again.

TEMPLE GRANDIN: You can have two kids that look real severe. And I looked real severe when I was -- when I was three. Real, real severe. And then you work on these kids. Lots of one-on-one therapy. And one kid, you kind of 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: So 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 SUSKIND: 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: And that's next.

NATHAN SANCHEZ: Hey guys, this is Nathan Sanchez calling from Santa Clara, California. Radiolab is supported in part by the National Science Foundation, and by the Alfred P. Sloan Foundation, enhancing public understanding of science and technology in the modern world. More information about Sloan at www.sloan.org. Thanks, guys.

JAD: I'm Jad Abumrad.

ROBERT: I'm Robert Krulwich.

JAD: This is Radiolab. And to continue with the story. 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 -- and not for the good.

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

CORNELIA SUSKIND: 14?

JAD: 14, okay.

CORNELIA SUSKIND: 15?

RON SUSKIND: 14, yeah.

CORNELIA SUSKIND: Ninth grade. It was 10th grade.

RON SUSKIND: Oh, right.

CORNELIA SUSKIND: 10th grade.

RON SUSKIND: Oh, was it?

CORNELIA SUSKIND: Yeah.

RON SUSKIND: That's right. That's right.

JAD: And what -- what happened?

RON SUSKIND: We didn't know what was happening. You know, we just saw over the months that Owen was really out of sorts.

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

RON SUSKIND: He's not sleeping.

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

WALTER SUSKIND: Oh, yeah. I still think about that whole scenario all the time. 'Cause 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'd pick up Owen from school ...

WALTER SUSKIND: He was just a shell of himself. You'd talk to him -- I'd pick him up and he would talk to himself in the car, and he'd be, "No!" Or, you know, "It's not true!" Or something under his breath.

ROBERT: And then ...

RON SUSKIND: At one point I overhear him in a kind of conversation with Phil, the sidekick of Hercules in that movie Hercules. Danny DeVito does the voice. And Phil is you know, "Listen kid, you can take him. You know, you gotta stand up for yourself!" That kind of thing that Owen was saying. And I didn't -- I didn't know where to fit it in.

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

CORNELIA SUSKIND: There are two kids in this class who are ED kids, emotionally disturbed kids, so they're not -- they're not on the autistic spectrum, and socially they're very on target. And 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 SUSKIND: They sat on either side of him and basically said, you know, "We're gonna kill you. We're gonna kill your parents."

OWEN SUSKIND: And those two bullies lied and bullied me badly.

RON SUSKIND: I mean, right then you were in a very bad spot, and you couldn't tell me or mom or anyone.

OWEN SUSKIND: Right.

RON SUSKIND: Because what happened? The bullies said what?

OWEN SUSKIND: Burn your house down.

RON SUSKIND: If what?

OWEN SUSKIND: If you tell.

RON SUSKIND: Right.

CORNELIA SUSKIND: And Owen was so literal, as are so many autistic kids, he believed that they literally meant they were gonna come and burn his house down.

RON SUSKIND: Then there's an extraordinary moment in the middle of this where Walter picks him up, and Owen starts to think -- go through a calculus. The bullies said if you tell your parents about what we said, we'll burn your house down, but they said nothing about your brother.

JAD: Oh!

RON SUSKIND: And so he's -- he sees, like, an opening.

OWEN SUSKIND: Yeah.

JAD: And so did you tell him?

OWEN SUSKIND: No, I didn't. No, I didn't. I ...

JAD: Why -- why not?

OWEN SUSKIND: Because I'm afraid he would beat them up. I didn't want that.

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

OWEN SUSKIND: No.

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

OWEN SUSKIND: Kill. But it's wrong.

JAD: Did you ever talk to Walt about it?

OWEN SUSKIND: A little bit later, after it happened.

WALTER SUSKIND: I just remember finding out, and it was like a combination of, like, rage and helplessness. That in a -- I literally just thought of what I would have done to that kid if I'd -- if Owen had told me. I really wanted to kill that kid. I mean I'm, you know, I'm his protector.

RON SUSKIND: In a way, you're -- you were kind of -- Walter was worried about protecting you in that time.

OWEN SUSKIND: Yeah.

RON SUSKIND: In a way, it was ...

OWEN SUSKIND: Me.

RON SUSKIND: That was doing what?

OWEN SUSKIND: Protecting myself.

RON SUSKIND: And who else?

OWEN SUSKIND: And my brother.

RON SUSKIND: Right. And Walt.

OWEN SUSKIND: And Walt.

RON SUSKIND: You were protecting Walter.

OWEN SUSKIND: Yeah.

JAD: So here you had 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.

RON SUSKIND: And are you in love right now?

OWEN SUSKIND: Yes, I am. With the girl of my dreams, Emily. She and I graduated from Riverview last month.

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

RON SUSKIND: GROW. Yeah.

JAD: And so he'll be graduating from the -- from the entire program?

CORNELIA SUSKIND: Yep, yep. And off on his own.

OWEN SUSKIND: And now me her and our other two friends John and Julie who also go to school, are all going to move and live at LIFE in Hyannis.

JAD: LIFE in Hyannis.

RON SUSKIND: And what is LIFE?

OWEN SUSKIND: Living Independently Forever.

RON SUSKIND: And what is it? What kind -- describe it.

OWEN SUSKIND: 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 Suskind's now, especially Walt.

WALTER SUSKIND: I think what scares me sometimes is kind of just having to go it alone in a lot of ways, and at the same time just being there for -- sorry. There's some daunting things ahead and I'm, you know, I'll just have to be ready to take these things on, kind of.

ROBERT: No wonder you don't like birthdays.

JAD: That makes sense. Makes perfect sense.

RON SUSKIND: Well, it's a tough one. I mean, Walter's like -- you know, he said to me at one point, he's like, "Is it always gonna be Disney? I mean, forever?" And I'm like, "I don't know, Walt."

CORNELIA SUSKIND: But we talk -- we talked to him about, you know, about everything. About, you know, our will, and who will be Owen's -- you know, how he figures into everything.

WALTER SUSKIND: All the efforts of what 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's -- it's his quest with his animal sidekicks to get him to the man village. What we have 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.

WALTER SUSKIND: As hard as we might try, we -- we may not get him there. But that doesn't mean you -- you leave him on the path. You stay with him on the path. Even if it's a never-ending path.

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, Elaine Hall, Steve Silverman, Pamela Deedelvore, and Kelsey Padgett.

ROBERT: And sincere thanks also to Gil Tippy and Tina McCourt at the Rebecca School, and to the whole staff at that school. They're all heroes in my mind here. So there you go.

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

ROBERT: I'm Robert Krulwich.

JAD: Thanks for listening.





