David Gerfast and his family are fighting cancer with an old-fashioned ship captain's bell and high-tech proton beam radiation.
When acclaimed journalist Ron Suskind’s son Owen was two and a half, he suddenly stopped communicating: his vocabulary dropped to a single word, “juice,” he would cry inconsolably and had trouble both eating and sleeping.
Owen was eventually diagnosed with autism, and over the next few years, Ron, his wife Cornelia and older son Walt struggled to communicate with him.
The vehicle they eventually found: the Disney films that Owen loved. Through characters in “Aladdin,” “The Lion King” and “The Jungle Book,” Owen could express himself and his feelings.
Ron Suskind writes about the journey the entire family took in his new book “Life, Animated: A Story of Sidekicks, Heroes, and Autism” (excerpt below). He and his son Walt speak to Here & Now’s Jeremy Hobson.
Ron on the moment his family realized the impact of Disney movies on Owen
“After the autism’s onset, Owen watched these movies with peculiar intensity, it seemed. I mean, he was joyful. His eyes lit up and he seemed to be calm there in ways he was calm nowhere else. After a couple months of that — he’s silent at this point, he really can’t speak — you hear him murmuring gibberish. He said ‘juicervose, juicervose’ — you know, it’s baby-talk. We’re like, ‘At least he’s making sounds, that’s good.’ And at that point, we’re watching ‘The Little Mermaid,’ all of us up in the bedroom in Georgetown, and all four of us are together. This is kind of the only thing we can do as a family at this point. And Owen’s rewinding the part where Ursula … Ariel’s the heroine, remember, and Ariel wants to become human. She has to pay a price for that. Ursula, the sea witch, says ‘It won’t cost much, just a trifle really — just your voice. And Owen’s rewinding that part … And after the third rewind, Cornelia says ‘It’s not “juice,” it’s “just.” He’s saying “just your voice.”‘”
Ron on the sidekick characters Owen identified with
“Owen becomes, you know, after he gets gets whacked a few times with schools and things like that — he feels like he’s a sidekick himself. And among sidekicks — there are hundreds in Disney, some are goofy, some are resourceful, some are wise — the only guy who is designated as a hero is Walter. So Walter would often have to play Simba, Aladdin, the folks who become heroes, to Owen’s sidekick — Rafiki, Merlin, Jiminy Cricket — and it was a fascinating dynamic.”
Walt on how he used Disney to communicate with Owen
“Like my parents, it was and, you know, a lot of times, still is the best way I can communicate with Owen, and it’s still, a lot of times, is what brings out the glow in him — I mean, a lot more things now, but it has been the one, you know, consistent all through the years, and you embrace it. And it’s interesting, because a lot of times when I tell someone I have an autistic brother, their first thing is a reaction of saying ‘I’m sorry,’ which is weird, because the way I always think about it is you can’t cry over spilled milk and you can’t think about what could be or what isn’t, and for us, Disney is what is. So just kind of embracing it and running with it as fast as you can, and to, you know — if that’s what’s gonna draw my brother closer to me and closer to my family and closer to people around him, then you pull your head down and you go in full bore.”
Walt on knowing he may one day have to care for Owen
“It’s something my parents and I have definitely talked about at different points. It’s, you know — I think it’s something that all siblings, all autistic siblings have to face at some point, that, you know, your parents will do whatever they can, but at the end of the day, it’s gonna be you and them, and it’s, you know, it’s your duty as a brother and as a sibling. I wouldn’t think of anything else. Of course I’ll be there.”
By Ron Suskind
Animated movies, especially the Disney ones, tend to finish with a reprise of the theme song in some pop version—sung by a star vocalist, like Michael Bolton or Elton John—that plays while the credits run. That’s when, after some umpteenth viewing, Cornelia or I tend to hustle out of the basement for all the things that’d been left waiting for the past ninety minutes: a simmering pot for pasta, a story in need of editing, calls to friends, relatives, news sources, housework of every possible variety, grocery shopping, a dog to feed, walk, bathe, unmade beds, untended gardens, or just a few minutes in the sunlight above ground. For Walt, usually homework. Owen invariably stays behind. We figure it’s for the music. He seems to like the reprise and always wants to stay to the bitter end. The movie isn’t complete for him until it fades to black. Anxious to get on with neglected tasks, no one did the math: the credits take between two and four minutes, but he’s down there for a half hour.
It isn’t until the spring of 1999 that we notice this after burn and double back to see he was rewinding that final song, halfway back, all the way, a third of the way. Doing it a few times over. Like so much else, why he did it was a mystery. Maybe he just loved the theme songs.
We don’t think of the credits because, well, he doesn’t read. Not really. And not for lack of trying. Just turned eight, he knows the alphabet, the sounds of consonants and vowels, and is trudging through very basic phonetics—dog, cat, run—with a once-a-week after-school educational tutor. Lab School marshals a host of techniques for students with reading problems, which was the one thing both the LD kids, many of whom were dyslexic, and the autistic or developmentally delayed kids all shared.
But then his tutor says something must be working. His decoding of words, creeping at a snail’s pace for two years, is picking up speed and precision. She wonders if they’re trying something new at Lab.
So we checked. No, it isn’t the school.
Disney Club seems to have added a class to its curriculum: movie credit reading and comprehension.
It’s actually independent study—Owen is self-directed, which we are fast realizing, seems . . . to be the only way he can learn. The basic model of early education—sit, listen, memorize, discuss, then measure progress (a test)—isn’t really working. Of those five steps, four are nonstarters for him. And memorization can’t be willed; it only works if he’s interested.
But he has become intensely interested in who is behind these screens of color and motion that give him such joy, such sustenance. few minutes in the sunlight above ground. We’re not sure when the light went on. Only that it did. A third plane, a grid, joined the first two—the real world and parallel Disney world. Both are connected by a third grid: all the people—artists, voice actors, script consultants, directors, character animators, and on and on—who craft the shifting landscape where Owen walks in his imagination for so many of his waking hours. It isn’t searching for God. But it’s close. He’s seeking out the creators.
Play, stop, rewind, play, stop, rewind, frame by frame. The methodology is logical and deliberate. He doesn’t seem to want to do it while we are in the room, so we start eavesdropping from the kitchen, just up the stairs. Here’s what we hear one night that winter: First he decodes the name of the character. Pick one. Urrrr . . . Urrsss . . . Ursssaaa . . . Urrrssooo. Considering it’s The Little Mermaid, he can, and does, finish up by quickly deducing “Ursula.” That’s a warm-up for the tougher, fresher terrain of the actor who voices the sea witch. He hits play for a minute, then stop, to get it frozen just right on the screen: P-p-p . . . P-paaaa . . .
After a few minutes of struggle, he pulls it all together: Pat Carroll. We hear him say the name softly, almost reverently, repeating it a few times. And then other words, like assistant and associate, lighting, director, and producer. He seemed happy and focused, scrolling frames, calm and intensely engaged, with so many movies to choose from. Our only job is not to disturb him.
Excerpted from the book LIFE, ANIMATED by Ron Suskind. Copyright © 2014 by Ron Suskind. Reprinted with permission of Kingswell.
JEREMY HOBSON, HOST:
This is HERE AND NOW. Writer Ron Suskind has reported on presidents. He's won the Pulitzer Prize, and he's published best-selling books including "Hope In The Unseen" and "The Price Of Loyalty." He's also got an autistic son named Owen who stopped communicating when he was about 2. Ron and his wife, Cornelia, tried everything until they found the one thing that allowed them to get through to Owen - Disney movies.
Ron Suskind writes about that journey in the new book "Life, Animated: A Story Of Sidekicks, Heroes, And Autism." He's with us in the studio. Ron Suskind, welcome.
R. SUSKIND: Great to be here.
HOBSON: And we've also got with us your son Walt Suskind who's with us from NPR in Washington - the person who the book is dedicated to. Walt, welcome to you as well.
W. SUSKIND: Great to be here. Thanks for having me.
HOBSON: Well, Ron Suskind, I want to start where this story starts. And that is the moment that you noticed that something was wrong with Owen. Can you tell us about what happened?
R. SUSKIND: We had just moved to Washington, D.C. from Boston. I was - I had a job at The Wall Street Journal as a reporter, and Owen just vanished on us. He just stopped talking. He stopped sleeping. He was very unhappy. He was crying a lot.
And we weren't sure what we were looking at. He was just shy of 3 at this point. Walt's 5, two years older. And we thought maybe it was moving. Some kids don't respond well to a move. But after a few months, he had gone from normal two and a half-year-old speech - a few hundred words - down to a single word, juice - one word. And at that point we knew something had to happen.
HOBSON: Walt, do you remember that at all?
W. SUSKIND: Not the specifics as much, but the general time frame and that, you know, something was up with Owen and something wasn't quite right. You know, as it progressed - and I remember him going in for tests and things like that - mom and dad began to, you know, cut me in little by little and kind of tried explain as best you can to a 5-year-old that something's not quite right with Owen, and we're trying to find out what it is.
HOBSON: Well, how do you explain that to a 5-year-old?
R. SUSKIND: You know, Owen is - I think it was around 7 - 6 or 7, Cornelia and I sort of sat Walt down and said your brother's a little different. He still is who he was. But this is going to mean that kids look at him maybe. Or, you know, it's going to be a little different for you as his brother. He's not going to want to do things like he did when he was two and a half 'cause, you know, at that point, they used to play and run around and do all the typical things.
HOBSON: And what you do as a parent because there's not a book on this to tell you exactly what you're supposed to do when you find out that your son autism?
R. SUSKIND: In fact, Cornelia searched for books. You know, it's like, isn't there a sibling book here that really helps us here? There wasn't one. So you just are improvising.
And in some ways - you know, this is 1993, '94. Autism is not, you know, on everyone's tongue at that point. And so there's a quite a bit of search-and-find an improvisation that goes on. So you feel your way every day.
HOBSON: And at a certain point, you figure out that there is something about Disney movies that allows you to get through to Owen. Tell us when you figured that out.
R. SUSKIND: Well, Owen loved the Disney animated movies as any two and a half-year-old did at that point. And that was a big era for Disney - "Little Mermaid," "Beauty And The Beast," "Aladdin" - all were coming out at that point. Biggest movies of the year of any...
HOBSON: Great movies, by the way.
R. SUSKIND: They were. You know, it was a big - Disney had a couple tough decades and came roaring back. After the autism's onset, Owen watched these movies with peculiar intensity it seemed. I mean, he was joyful. His eyes lit up, and he seemed to be calm there in ways he was calm almost nowhere else.
After a couple months of that - he's silent at this point. He really can't speak. We hear a murmuring gibberish. He said juicervas (ph) juicervas. You know, it's baby talk. We're like at least he's making sounds. That's good.
And at one point we're watching "The Little Mermaid," all of us up in the bedroom in Georgetown, and all four of us are together. This is the one thing we can kind of all do as a family at this point. And Owen's rewinding the part where Ursula, who is this - Ursula, to be clear, OK. She's the - the part where...
HOBSON: For the three people, who have not seen this movie, yes.
R. SUSKIND: OK. Ariel's the heroine, remember.
R. SUSKIND: Ariel wants to become human. She has to pay a price for that. Ursula, the sea witch, says, it won't cost much, just a trifle really - just your voice. And Owen's rewinding that part.
HOBSON: So he wasn't saying juicervas. He was saying, just your voice.
R. SUSKIND: Well, and that's what he - and then we realized. Oh, after the third rewind, Cornelia says it's not juice, it's just. He's saying just your voice. And at that point we thought - it was like a window opened and in we jumped.
Now, ultimately, we go to our therapist and our doctors and they say this is called echolalia. They mimic things. They don't understand it like a parrot. But we're thinking he may be understanding these the scripts. He seems to have memorized these movies as sound alone and is trying to make sense of the words.
HOBSON: And you write in the book, it's almost like there's no autism. He's not playing the roles as well as we are. He's playing them better than we are. Mimicry is one thing. This isn't that.
R. SUSKIND: Once we realized he had memorized these movies, you could throw him a line. He'd throw you back the next line. But what came with that line was emotion. He seemed to be emoting it as he should in the proper emotions but quite - quite intensely. And that's where we started playing out scenes, all four of us, in the basement. We called them the basement sessions where we'd play out scenes from Disney. We did that for years.
HOBSON: Let's listen to one of them. This is from the movie "Aladdin."
(SOUNDBITE OF FILM, "ALADDIN")
GILBERT GOTTFRIED: (As Iago) Wait a minute. Jafar, what if you were the chump husband.
JONATHAN FREEMAN: (As Jafar) What?
GOTTFRIED: (As Iago) OK, OK. You marry the princess, all right? And - and - then you become the sultan.
FREEMAN: (As Jafar) Marry the shrew. I become the sultan. The idea has merit.
HOBSON: Ron Suskind, when you listen to that, do you remember all of the words to that scene?
R. SUSKIND: Well, you know, you could ask Walter, you know. Walt...
HOBSON: Walt, do you remember all the words to that scene?
W. SUSKIND: Oh, yeah, absolutely. We're about two beats away from the foul little minds and all that. It's - yeah.
HOBSON: Have you both played Iago?
W. SUSKIND: I can't quite channel Gilbert Gottfried as well as Owen and Dad can. So I've usually jump in on Jafar.
R. SUSKIND: (Imitating Iago) Now, hold on now, Walter. Excuse me. Excuse me.
HOBSON: (Laughing) That's very good.
W. SUSKIND: Yeah, yeah. We all - we all...
R. SUSKIND: (Laughing) Owen does it better than all of us, which is the thing.
W. SUSKIND: But we all swap around on the different roles depending who's down in the basement.
HOBSON: And Iago is just one of many sidekicks that Owen really got into.
R. SUSKIND: Yeah, Owen becomes, after he gets whacked a few times with schools and things like that, he feels like he's a sidekick himself. The only guy who is designated as a hero is Walter. So Walter would often have to play Simba, Aladdin - the folks who become heroes to Owen's sidekick - Merlin, Rafiki, Jiminy Cricket. And it was a fascinating dynamic.
HOBSON: Walt, as you're figuring this out, what were you thinking as you're seeing that Disney is the way that, certainly, your parents are able to communicate with Walt?
W. SUSKIND: Like my parents, it was - and, you know, a lot of times still - the best way I can communicate with Owen. And it's still a lot of times is what brings out the glow in him. I mean, a lot more things now. But it has been the one, you know, consistent all through the years. And if that's what's going to draw my brother closer to me and closer to my family and closer to people around him, then you put your head down and you go in full-bore.
HOBSON: That's Walt Suskind. We're speaking with him and his father Ron about Ron's new book "Life, Animated: A Story Of Sidekicks, Heroes, And Autism." You're listening to HERE AND NOW.
It's a HERE AND NOW. And if you're just joining us, we're talking with author Ron Suskind and his son Walt. Ron Suskind's new book "Life, Animated: A Story Of Sidekicks, Heroes, And Autism" is about his son Owen who is autistic. The family figured out when Owen was little that they could communicate with him through the magical world of Disney. And, Ron Suskind, not everyone was a fan of this - that he was spending so much time watching Disney movies.
R. SUSKIND: And this is a challenge with autism. These are called affinities. Every kid's got one at least - you know, "Thomas the Tank Engine," anime, Disney. It could be maps. It could be train schedules. And they've been the elephant in the room all the way back since the 1930s when autism was first identified.
What do you do with them? Do you embrace them? You try to cut them off? Most people through the last 20 years had cut them off. Wean the kid off of them. They're obsessive.
And after we tried that, we said, you know, we know what works. We're going to embrace it. And the more we did, the deeper Owen let us into this underground cavern. And once we got in there, it was like, my gosh. There's navigation equipment down here. These words actually mean these things. And he's using them and the scripts as an emotional language. That's what we learned. And he developed, essentially, his own language using dozens of hours of scripts that he had memorized.
HOBSON: Like what? What were you able to figure out through this?
R. SUSKIND: Well, you know, he would express all sorts of things. I mean, all the way up to he leaves - he's in a college program now. I'll give you an example. Before he leaves for college, he wants to watch a particular scene. And it's where, at the end of "The Little Mermaid" where Ariel, you know, moves forward in her life. And Sebastian the crab says, (imitating Sebastian) like I always say, Your Majesty, children got to be free to lead their own lives.
And Owen plays that part and turns to me and Cornelia and says are we OK? He's leaving the next morning for college. And we said, we're fine, honey. We'll miss you terribly. But that's the way it should be. And he'd say, OK, I'm good.
HOBSON: Walt, there's a moment in the book when you have a party at the house, and you want to make sure that Owen doesn't tell your parents about this. Tell us what you said to him.
W. SUSKIND: I had kind of implied with some (unintelligible) and pretty much told him I'm going to have some people over. We're going to be in the basement. Please don't tell mom and dad about this.
HOBSON: And you said you're not going to be lying to them, I just don't want you to tell them what...
W. SUSKIND: Yeah.
HOBSON: ...That there were people here.
W. SUSKIND: Yeah. I didn't tell - I didn't want him to tell them a lie. I just wanted him to omit certain facts maybe. My parents knew people were coming over. And they thought it was my four buddies that usually sat in the basement and played video games with me, and not the 70 other people from my school.
HOBSON: By you, Ron Suskind, figured out a way around this when you sat down with Owen.
R. SUSKIND: I tricked him is what I do. And he's really holding his ground not wanting to break his bond with Walter. I mean, this is really parental idiocy on my part. You know, to have Owen turn state's evidence was just an, you know, idiotic move. Here's the one bond the brothers make.
R. SUSKIND: ...What Cornelia and I had been hoping for. Instead, I isolate Owen, and I say, did Walter have a party? And he's like, you know...
HOBSON: Wouldn't say anything.
R. SUSKIND: And then I'm like, were there girls over? - change the subject. And he's like, yes. And I'm like, a lot of girls? And then I do it joyously 'cause he's looking for my face for social cues. And he's like, yes. How many? Forty-one girls.
R. SUSKIND: And, you know - but this is - the book is a lot of, you know, search-and-find by - this is a great search-and-find moment.
HOBSON: And what did that do to your relationship with Owen, Walt?
W. SUSKIND: It did nothing. I mean, I didn't want him to tell anything. But if Owen hadn't blown my cover, I think about 14 other clues that they would stumble across over the course of the next day would have. So...
HOBSON: But there were some times when you didn't want to be seen around with Owen all the time.
W. SUSKIND: Yeah, definitely. And I think it was more, you know, elementary school, middle school and some even in high school where it was tough 'cause it's hard to explain to other 13-year-olds why your little brother is running around talking to himself, and, you know, as we called him - when he stimmed, we used to call it silly. And it's hard to explain that to other kids your age when you're 8 and all you really want to do is try and, you know, fit in as best you can. And you're trying to swim in the current with everyone else, and there's your brother. And, you know, kids are pointing and laughing at him.
And there were definitely times when it could get tough. And, you know, you just kind of wanted to bury your head in the sand and wish that you could have a, quote-unquote, "normal brother." But I think as I got older and moved into, you know, later on in high school, you realize it's not going to change. It's - it is what it is. And you kind of just got to build up the courage to bring some friends in and bring some more in and kind of explain this is Owen, and this is who he is.
And, you know, once people came to understand that and kind of saw it in a closer light when they would come down to the basement and see Owen there watching his movies, it kind of eased it and kind of made me feel more comfortable in my skin - you know, walking around and being able to explain Owen and not kind of fearing what was going to come out of other people's mouths.
HOBSON: Do you see yourself someday becoming Owen's primary caregiver?
W. SUSKIND: Yeah, absolutely. I've - this is something my parents and I have definitely talked about at different points. It's - you know, I think it's something that all siblings - autistic siblings have to face at some point that your parents will do whatever they can. But at the end of the day, it's going to be you and them. And it's your duty as a brother and as a sibling. I wouldn't think of - I wouldn't think of anything else. Of course I'll be there.
HOBSON: Ron Suskind, what was it like interviewing your son Walt for this book?
R. SUSKIND: That was the toughest interview I did. There were moments where, you know, he's saying stuff to me and really to Cornelia that, you know, a son, even an adult son, might not say to a parent about, you know, how sometimes we missed opportunities. Sometimes we were not seeing things as they were. In some ways, this book is really about everybody. It's about the stories we tell ourselves to make our way in the world. Owen finds these narratives in Disney. All of us find the stories that we embrace here in this book.
HOBSON: How is Owen doing now?
W. SUSKIND: Great.
R. SUSKIND: Yeah.
W. SUSKIND: Kicking butt and taking names. He's graduating from Riverview in two weeks.
R. SUSKIND: That's a college program in Cape Cod.
W. SUSKIND: Sorry, yeah. Owen is becoming a fully-formed, strapping 23-year-old guy now. It's incredible to see.
R. SUSKIND: He's got a girlfriend.
W. SUSKIND: Yeah.
R. SUSKIND: Yeah, Walt's been his advisor on romantic issues. And so he's very proud of Owen's two-year relationship.
HOBSON: That's great.
W. SUSKIND: And the Disney source here - I don't know if you know the part from "Sword And The Stone" when Merlin and Arthur are talking about the power of love. That was definitely a handy one to use - to give Owen a blueprint on starting out with a girlfriend, so.
R. SUSKIND: And Walter, you know - Walt of course has his PhD in Disney at this point. And recently, we were talking at a bookstore. And Walt - Walt, tell them - what did you - the thing about the man village. That was beautiful.
W. SUSKIND: Oh, yeah. Sure. Well, you know, in - somehow "The Jungle Book" came up. And the idea of "The Jungle Book" is all these sidekick characters are helping this boy Mowgli find the man village 'cause that's where he needs to be.
And part of, I feel, our family's journey and all these people that are in the book, all these characters, that have helped Owen along the way is - we're kind of bringing him along to this man village. And he's come so far. There is a lot more road to go.
But he's, you know, every step forward that's - he's getting closer and closer to, you know, him and all these other kids with autism are getting closer and closer to arriving at this man village and being there and standing next to all of us - though, they've been there all along - but to be recognized for, you know, being there with us.
HOBSON: The book is called "Life, Animated: A Story Of Sidekicks, Heroes, And Autism." It's a great book. Ron Suskind and Walt Suskind, thank you so much for joining us.
R. SUSKIND: Hey, thank you.
W. SUSKIND: Thank you.
(SOUNDBITE OF SONG, "BARE NECESSITIES")
HOBSON: What a story. And we've got an excerpt from the book at our website hereandnow.org. HERE AND NOW is a production of NPR and WBUR Boston in association with the BBC World Service. I'm Jeremy Hobson.
ROBIN YOUNG, HOST:
I'm Robin Young. This is HERE AND NOW. Transcript provided by NPR, Copyright NPR.
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