Boy With Autism Draws Disney
Reaching My Autistic Son Through Disney
In our first year in Washington, our son disappeared.
Just shy of his 3rd birthday, an engaged, chatty child, full of typical speech — "I love you," "Where are my Ninja Turtles?" "Let's get ice cream!" — fell silent. He cried, inconsolably. Didn't sleep. Wouldn't make eye contact. His only word was "juice."
I had just started a job as The Wall Street Journal's national affairs reporter. My wife, Cornelia, a former journalist, was home with him — a new story every day, a new horror. He could barely use a sippy cup, though he'd long ago graduated to a big-boy cup. He wove about like someone walking with his eyes shut. "It doesn't make sense," I'd say at night. "You don't grow backward." Had he been injured somehow when he was out of our sight, banged his head, swallowed something poisonous? It was like searching for clues to a kidnapping.
After visits to several doctors, we first heard the word "autism." Later, it would be fine-tuned to "regressive autism," now affecting roughly a third of children with the disorder. Unlike the kids born with it, this group seems typical until somewhere between 18 and 36 months — then they vanish. Some never get their speech back. Families stop watching those early videos, their child waving to the camera. Too painful. That child's gone.
In the year since his diagnosis, Owen's only activity with his brother, Walt, is something they did before the autism struck: watching Disney movies. "The Little Mermaid," "Beauty and the Beast," "Aladdin" — it was a boom time for Disney — and also the old classics: "Dumbo," "Fantasia," "Pinocchio," "Bambi." They watch on a television bracketed to the wall in a high corner of our smallish bedroom in Georgetown. It is hard to know all the things going through the mind of our 6-year-old, Walt, about how his little brother, now nearly 4, is changing. They pile up pillows on our bed and sit close, Walt often with his arm around Owen's shoulders, trying to hold him — and the shifting world — in place.
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Then Walt slips out to play with friends, and Owen keeps watching. Movie after movie. Certain parts he rewinds and rewatches. Lots of rewinding. But he seems content, focused.
We ask our growing team of developmental specialists, doctors and therapists about it. We were never big fans of plopping our kids in front of Disney videos, but now the question seemed more urgent: Is this good for him? They shrug. Is he relaxed? Yes. Does it seem joyful? Definitely. Keep it limited, they say. But if it does all that for him, there's no reason to stop it.
So we join him upstairs, all of us, on a cold and rainy Saturday afternoon in November 1994. Owen is already on the bed, oblivious to our arrival, murmuring gibberish. . . . "Juicervose, juicervose." It is something we've been hearing for the past few weeks. Cornelia thinks maybe he wants more juice; but no, he refuses the sippy cup. "The Little Mermaid" is playing as we settle in, propping up pillows. We've all seen it at least a dozen times, but it's at one of the best parts: where Ursula the sea witch, an acerbic diva, sings her song of villainy, "Poor Unfortunate Souls," to the selfish mermaid, Ariel, setting up the part in which Ursula will turn Ariel into a human, allowing her to seek out the handsome prince, in exchange for her voice.
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When the song is over, Owen lifts the remote. Hits rewind.
"Come on, Owen, just let it play!" Walt moans. But Owen goes back just 20 seconds or so, to the song's next-to-last stanza, with Ursula shouting:
Go ahead — make your choice!
I'm a very busy woman, and I haven't got all day.
It won't cost much, just your voice!
He does it again. Stop. Rewind. Play. And one more time. On the fourth pass, Cornelia whispers, "It's not 'juice.' " I barely hear her. "What?" "It's not 'juice.' It's 'just' . . . 'just your voice'!"
I grab Owen by the shoulders. "Just your voice! Is that what you're saying?!"
He looks right at me, our first real eye contact in a year. "Juicervose! Juicervose! Juicervose!"
Walt starts to shout, "Owen's talking again!" A mermaid lost her voice in a moment of transformation. So did this silent boy. "Juicervose! Juicervose! Juicervose!" Owen keeps saying it, watching us shout and cheer. And then we're up, all of us, bouncing on the bed. Owen, too, singing it over and over — "Juicervose!" — as Cornelia, tears beginning to fall, whispers softly, "Thank God, he's in there."
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We told his various therapists about what happened. Cornelia and I could think of little else. Owen reached out, if only for a moment, from his shut-in world. We spoke to our child.
The speech therapist tamped down our enthusiasm. Dr. Alan Rosenblatt, our trusted developmental pediatrician, did, too. He explained that echolalia is a common feature in kids like Owen. It's something babies sometimes do between 6 and 9 months, repeating consonants and vowels as they learn to turn babble into words. It's also something seen in people with developmental disabilities who can't speak. Just like what the term suggests, they echo, usually the last word or two of a sentence. "You're a very smart and pretty girl," a mother might say to her daughter. "Pretty girl," the child will respond, an echo. Do those kids know what the words mean, we pressed Rosenblatt. "Usually not," he said. "They may want to make a connection, which is hopeful," he added.
"They just repeat the last sound," I croaked. He nodded. Why, I persisted, in a last stab, would he be rewinding that one part for weeks, maybe longer, and choose that phrase from so many in an 83-minute movie? Rosenblatt shrugged. No way of knowing.
Three weeks after the "juicervose" dance, we are at Walt Disney World. Walt grabs Owen's hand, and off they go down Main Street, U.S.A. There are attractions in Fantasyland — the Mad Tea Party, Snow White's Scary Adventures, Mr. Toad's Wild Ride — that echo movies they both love. The boys sit in the flying galleon on Peter Pan's Flight as it swirls and dips over landscapes and figures from Never Land, the Lost Boys frolicking in their lair, Wendy walking the plank, Peter Pan crossing swords with Captain Hook. They look like any other pair of brothers, and in the trick of this light, they are.
Each time Cornelia and I feel that, we catch ourselves. After the "juicervose" euphoria and then the cold water poured on us by doctors, we try to make sure we aren't just seeing what we want to see.
But by midafternoon, it's clear that Owen isn't self-talking in the streams of gibberish or flapping his hands as he usually does. Some, but not much. He seems calm and focused — following the group, making eye contact — and oddly settled, with a slight smile, eyes alight, just as he is while watching the movies on our bed. Owen seems at home here, as though his identity, or however much of it has formed, is somehow tied to this place.
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On the way out of Magic Kingdom, when Walt spots the Sword in the Stone near the carousel, we can't help indulging in fantasy. A Disney actor dressed as Merlin is there, reciting dialogue — "Let the boy try." As we approach the anvil, someone flips a hidden switch that loosens the sword. Walt pulls it out as Merlin cries, "You, my boy, are our king!"
Then both of them turn to Owen. "You can do it, Owie," Walt whispers. "I know you can." Owen looks evenly at his brother and Merlin, and then steps to the anvil and lifts the sword true. Did he understand what Walt was saying? Did he just imitate what he saw his brother do? What the hell difference did it make? Today, in the sunlight, he's the hero of his imagination.
It's Walt's 9th birthday, September 1997, in our new house near Chevy Chase Circle. Owen is 6½. After roughhousing with buddies in the backyard at the end of his party, Walt gets a little weepy. He's already a tough, independent kid, often the case with siblings of disabled kids. But he can get a little sad on his birthdays. As Cornelia and I return to the kitchen, Owen walks in right behind us.
He looks intently at us, one, then the other. "Walter doesn't want to grow up," he says evenly, "like Mowgli or Peter Pan."
We nod, dumbly, looking down at him. He nods back and then vanishes into some private reverie.
It's as if a thunderbolt just passed through the kitchen. A full sentence, and not just an "I want this" or "Give me that." No, a complex sentence, the likes of which he'd not uttered in four years. Actually, ever.
We don't say anything at first and then don't stop talking for the next four hours, peeling apart, layer by layer, what just happened. Beyond the language, it's interpretive thinking that he's not supposed to be able to do: that someone crying on his birthday may not want to grow up. Not only would such an insight be improbable for a typical 6-year-old; it was an elegant connection that Cornelia and I overlooked.
It's as if Owen had let us in, just for an instant, to glimpse a mysterious grid growing inside him, a matrix on which he affixed items he saw each day that we might not even notice. And then he carefully aligned it to another one, standing parallel: The world of Disney.
After dinner is over and the boys retreat upstairs to their attic lair, Cornelia starts to think about what to do now. It's like he peeked out from some vast underground and then vanished. He's done this before, but never quite like this. "How on earth," she says almost to herself, "do you get back in there?"
I feel she's asking me. She has been the one lifting the burden each day, driving him to therapists and schools, rocking him to sleep as he thrashes at 3 a.m. I'm the one who tells stories, does voices, wears a propeller hat. Her look says, "Find a way."
Soon I'm tiptoeing up the carpeted stairs. Owen's sitting on his bed, flipping through a Disney book; he can't read, of course, but he likes to look at the pictures. The mission is to reach around the banister into his closet and grab his puppet of Iago, the parrot from "Aladdin" and one of his favorite characters. He has been doing lots of Iago echolalia, easy to identify because the character is voiced by Gilbert Gottfried, who talks like a busted Cuisinart. Once Iago's in hand, I gently pull the bedspread from the foot of Owen's bed onto the floor. He doesn't look up. It takes four minutes for Iago and me to make it safely under the bedspread.
Now crawl, snail-slow, along the side of the bed to its midpoint. Fine.
I freeze here for a minute, trying to figure out my opening line; four or five sentences dance about, auditioning.
Then, a thought: Be Iago. What would Iago say? I push the puppet up from the covers. "So, Owen, how ya doin'?" I say, doing my best Gilbert Gottfried. "I mean, how does it feel to be you?!" I can see him turn toward Iago. It's as if he is bumping into an old friend. "I'm not happy. I don't have friends. I can't understand what people say." I have not heard this voice, natural and easy, with the traditional rhythm of common speech, since he was 2. I'm talking to my son for the first time in five years. Or Iago is. Stay in character. "So, Owen, when did yoooou and I become such good friends?"
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"When I started watching 'Aladdin' all the time. You made me laugh so much. You're so funny."
My mind is racing — find a snatch of dialogue, anything. One scene I've seen him watch and rewind is when Iago tells the villainous vizier Jafar how he should become sultan.
Back as Iago: "Funny? O.K., Owen, like when I say . . . um. . . . So, so, you marry the princess and you become the chump husband." Owen makes a gravelly sound, like someone trying to clear his throat or find a lower tone: "I loooove the way your fowl little mind works." It's a Jafar line, in Jafar's voice — a bit higher-pitched, of course, but all there, the faintly British accent, the sinister tone.
I'm an evil parrot talking to a Disney villain, and he's talking back. Then, I hear a laugh, a joyful little laugh that I have not heard in many years.
A week after the Iago breakthrough, we decide to try an experiment. Owen usually picks the animated movie whenever we gather in front of the 26-inch Magnavox in the basement. On this night, we pick it for him: "The Jungle Book." It's a movie that the boys have long loved and one that Cornelia and I remember from our childhood: Disney's 1967 rendition of Rudyard Kipling's tales of Mowgli, a boy raised by wolves in the jungles of India, schooled by Baloo, the obstreperous bear, and Bagheera, the protective black panther.
We watch the movie until, a few minutes along, we get to its signature song, "The Bare Necessities." We turn down the sound, and in my best attempt at the voice and inflection of Phil Harris, who voices the bear, I say: " 'Look, now, it's like this, little britches. All you've got to do is. . . . ' "
Then we all sing, trying to get the words right:
Look for the bare necessities,
The simple bare necessities. . . .
When you look under the rocks and plants
And take a glance at the fancy ants, and maybe
try a few.
Just as Baloo looks at Mowgli, I look at Owen; he looks squarely back at me, and then it happens. Right on cue, he says, " 'You eat ants?' " That's Mowgli's line; he speaks it as Mowgli, almost like a tape recording.
I'm poised with Baloo's next line: " 'Ha-ha, you better believe it! And you're gonna love the way they tickle.' "
A few minutes later, when King Louie, the crazy orangutan, voiced by the jazz trumpeter and singer Louis Prima, sings to Mowgli about becoming a man, Walt's ready. " 'Teach me the secret of man's red fire,' " he says, pulling on his ear, waiting for the whispered secret from the boy. Owen recoils, just as Mowgli does in the movie, and says, " 'I don't know how to make fire.' " Cornelia catches my eye; I shake my head. The inflection and ease of speech are things he can't otherwise muster. It's almost as though there's no autism. Mimicry is one thing. This isn't that. The movements, the tone, the emotions seem utterly authentic, like method acting.
When Owen was 3, his comprehension of spoken words collapsed. That's clear from every test. But now it seems that as he watched each Disney movie again and again, he was collecting and logging sounds and rhythms, multitrack. Speech, of course, has its own subtle musicality; most of us, focusing on the words and their meanings, don't hear it. But that's all he heard for years, words as intonation and cadence, their meanings inscrutable. It was like someone memorizing an Akira Kurosawa movie without knowing Japanese. Then it seems he was slowly learning Japanese — or, rather, spoken English — by using the exaggerated facial expressions of the animated characters, the situations they were in, the way they interacted to help define all those mysterious sounds. That's what we start to assume; after all, that's the way babies learn to speak. But this is slightly different because of the way he committed these vast swaths of source material, dozens of Disney movies, to memory. These are stored sounds we can now help him contextualize, with jumping, twirling, sweating, joyous expression, as we just managed with "The Jungle Book."
So begin the basement sessions. During daylight, we go about our lives. Walt rides his bike to school each morning, back home each afternoon. Cornelia manages the house, the bills, the overloaded schedules of the kids. I am editing and writing for The Journal, putting on my suit and subwaying to the bureau.
No one knows we're all living double lives. At night, we become animated characters.
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By the fall of 1999, the start of Owen's third year at the Lab School of Washington, a private school for kids with learning disabilities, we see his skills improving, his rudimentary reading, his new ability to do simple math. But the progress is uneven and unsteady, as is the building of social connections with potential friends. It's a struggle for him to keep up, the school warns us darkly, because his mind so often races through the parallel universe of movies.
We tell them what we've found: The key is to harness it. We discovered that he learned to read using the slowly scrolling credits at the end of movies. He'd hit pause and decode — animators, art directors, best boys, long-dead voice actors — desperate to know who was behind the flickering screen of light. The school rose to the challenge, up to a point, letting him cast and star in a play of "Br'er Rabbit and the Tar Baby" — with Owen reciting every line from our bootleg copy of "Song of the South."
But by his fifth year at Lab, we sense trouble has arrived. Owen is making progress, but the other kids, with lighter burdens, are moving faster. Sally Smith, the school's director, says it just isn't working out for Owen at Lab. What we both know is that the school has changed. Each year, I help Smith with a gala for Learning-Disabled Achievers, a glittering night in Washington honoring people like Tom Cruise and David Boies, most of them with more manageable issues like dyslexia. The students now bend more toward younger versions of those glittering awardees rather than the disabled son whom Smith founded her school in 1967 to help.
I make my case: Owen is making progress in his own fashion, improving by the day. "He's turning these movies into tools that, more and more, he's using to make sense of the wider world," I tell her.
She looks at me sympathetically but doesn't budge. "Many of these kids are just too hard to teach," she says, then pauses. "Look, not picking up social cues is just too great a burden. They can't engage with teachers or peers with enough ease, enough capacity, to push themselves forward."
I rise from my chair. "You started this school so your son, who'd been discarded, would have a place to go," I say, putting on my coat. Her son, Gary, now well into adulthood, has significant challenges, much like Owen. "Do you think he'd be accepted here today?"
Those are fighting words. I can't help it. I am thinking how difficult this is going to be for Owen. To her credit, Smith doesn't rise to battle.
"Look, I'm sorry," she says quietly. "Times change. We're serving a need and serving it well. Just not anymore for someone like Owen."
We call the school he was at six years before, Ivymount, which is for needier and more disabled kids, and tell the administrators that Owen will not be moving up with his class to the middle school at Lab. They're sympathetic and say they will gladly take him back. We're worried that he'll lose some of the gains he has made being in class with kids who have milder challenges, but we don't have much of a choice.
We tell Owen in early May 2002, a month before he will leave his school. We go out to dinner and say he'll be going back to Ivymount. He has made a few friends at Lab. They do things together, are starting to form little rituals. Quite a lot about friendship, after all, is ritual. "It'll be great, Owie," Walt says, putting his arm around Owen's shoulder. "I'm sure some of your old friends at Ivymount will still be there."
Owen gets this look where he raises his eyebrows and presses his face into the widest of smiles. He calls it "happy face." He does it when he's worried he might cry.
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Back at Ivymount in the fall, Owen, now 11, is not being challenged academically or socially. Cornelia's response is to crank up his programming. She starts him in piano lessons with an Ivymount instructor who specializes in teaching special-needs kids. There are still the rounds of therapist visits and any after-school activity we can find. Not many playdates, though.
Owen doesn't seem to mind. All he wants are sketch pads and pencils. Markers, too. He goes through a pad in a few days and wants another. O.K., back to the CVS. A few more days, he needs another one. I look around for what are now two missing pads. They're nowhere. Could he have hidden them?
We've been observing him closely since the ouster from Lab. We know he was bruised, but he doesn't have enough expressive speech to explain his feelings. So we watch, collecting clues, like spies in our own home. He's distracted. He's watching lots of videos. The school reports that he's doing lots of "silly," the word we use for self-stimulatory behavior like flapping hands.
One Saturday afternoon, while Cornelia and Walt are running errands, I see Owen padding across the kitchen's Mexican tile floor on his way to the basement with pad, pencils and one of his large animation books in hand. I wait a minute before I tiptoe behind him, stopping at the bottom of the stairs. He's on the rug, kneeling but hunched forward, flipping furiously through the book; as I edge closer, I see it contains artwork from "Learn to Draw Disney's The Little Mermaid."
Standing silently over him, I can see he's stopping at pictures of Sebastian, the wise crab who watches over the heroine, Ariel. There are lots of Sebastians: pencil sketches from when the animators were developing the character, full-color renderings of key scenes from the movie. That is where he stops, at a slide of Sebastian with a fearful look, mouth open and eyes wide.
The sketchbook flies open, the black pencil in hand. He looks from the picture to his pad, picture, pad, picture, pad. And then the tightly gripped pencil begins to move, a lead-lined crawl. Most kids, most anyone, would begin with the face — where we all tend to look first — but he starts on the edge, with the crab leg, then the claw, which take shape in a single line. I think of those old-style drafting machines with two pencils poised above two pads, the pencils connected to a mechanical apparatus, a crosshatch, so that moving one would create the same motion, the same precise line, with the other. At the end, you'd have two identical drawings, side by side.
But here's the crazy part: Every part of him starts moving except that rock-steady hand. His whole body begins twisting and flinching, moving as much as you can move while kneeling, with his free arm bending in the angle of Sebastian's left claw. Five minutes later, when he gets to the face, I look up and see a reflection of Owen's face, me behind him, in the darkened screen of the TV in front of us. The look on the crab's face in the book is replicated in my son's reflection on the TV, where, of course, we've watched this scene — of Sebastian watching Ariel lose her voice — so many times.
And then it's over, like a passing storm. He drops the pencil, rears back, turns his head, leaps up and bounds off.
It freaks me out.
He can't write his name legibly. But here is a rendering of a Disney character that might have easily appeared in any one of 20 animation books in his room.
I squat down and begin flipping. It's one character after another — the Mad Hatter next to Rafiki, and then Lumiere, the candelabra from "Beauty and the Beast," and then Jiminy Cricket. The expressions are all so vivid, mostly fearful. Dozens of them, page after page.
I settle in cross-legged on the carpet to examine the pages. What do the drawings mean? Are the faces of these characters a reflection of hidden, repressed feelings? Does he race through the books looking for an expression that matches the way he feels and then literally draw that emotion to the surface?
Could be a half-hour I'm sitting, maybe longer. I'm inside him, or so I imagine, running my fingers along the slight indentations of carbon — a smiling mouth of Baloo, a weeping dwarf, a soaring crow from "Dumbo" — to try to touch him, his tears and smiles and moments of sudden flight. This is the crushing pain of autism. Of not being able to know your own child, to share love and laughter with him, to comfort him, to answer his questions. Cornelia spends time in here, in his head — this child she carried — whispering to him. Now I'm in here, too.
Time passes, pages turn. And then I see writing. On the next to last page of the sketchbook, there's something. It's his usual scrawl, the letters barely legible: "I Am the Protekter of Sidekicks."
I flip to the last page. In the chicken scratch of a kindergartner is a single sentence: "No Sidekick Gets Left Behind."
We need the right moment to respond. Every second we're with Owen in the coming days, Cornelia and I look for our opening — a moment when he's alone, or settled, or upbeat or a bit more talkative than usual.
Then the stars align. He's watching "Beauty and the Beast" and wants us all to join him. Soon we're together in the basement, watching the familiar opening, when the handsome prince spurns an old, ugly woman on a forbidding night, only to have her transform into a beautiful enchantress, who turns him into a hideous beast; a spell that can be broken only if he can "learn to love another and earn her love in return."
As the credits roll, we do a few voices — I say, "Sacre bleu, invaders!" as Lumiere (Jerry Orbach, doing a stagy French accent). Cornelia throws in Mrs. Potts (Angela Lansbury, upper-crust British): "He's finally learned to love." Owen rises to each with a burst of follow-up lines. We respond in character. Nothing special. Just your average American family speaking in Disney dialogue.
Both characters are vividly drawn in his sketchbook. "They're a great pair of . . . sidekicks," Cornelia says. We've never used the word with him in conversation. Owen snaps to. "I love Mrs. Potts and Lumiere," he says.
"What is a sidekick?" Cornelia asks him.
"A sidekick helps the hero fulfill his destiny," he chirps. Rolls right off his tongue. A classical, elegant definition.
"Do you feel like a sidekick, Owie?" Cornelia asks him softly. Their eyes are aligned, just the two of them now, looking into each other, until he suddenly breaks into "happy face."
"I am one!" he says. His voice is high and cheery, no sign of a quaver. "I am a sidekick." The words come out flat, without affectation. But he compensates, giving them expression by nodding after every two syllables.
"And no . . . sidekick . . . gets left . . . behind."
There's no doubt, now, that he sees what we see: that kids of all kinds, including his classmates at Lab School, are moving on, while he's left behind. The sidekicks have emerged, sketch by sketch, in the difficult months since his ejection from Lab. His response has been to embrace it, the pain of it, and be a protector of the discarded. He starts giving sidekick identities to his classmates at Ivymount, so many of whom are heavily burdened — some with physical infirmities, and plenty of autistic kids with little speech. But they have qualities that he's identifying — this one was loyal, that one gentle, another one silly in some lighthearted way that makes him laugh.
It's often the supporting players in Disney fables who are more varied and vivid. Even in the earliest Disney movies, the first sidekicks — Goofy, Pluto and then Donald Duck — often carried confusions, frailties, foolishness, pride, vanity and hard-won, often reluctantly learned, insights. The spectrum of complex human emotions is housed with the sidekicks.
Owen and I walk gingerly down the icy steps of a side entrance to Dan Griffin's basement office in Takoma Park, Md. It's a particularly cold and stormy afternoon in December 2005, the week before Christmas. Griffin welcomes us with hugs, as always, and we settle into our usual chairs.
Owen started seeing the psychologist last year, when he was 13. More than any other therapist, Griffin took to the "Disney therapy," or more broadly, what might be called "affinity therapy," that Cornelia and I, with Walt's assistance, have been conducting for years in our home, and even more so recently. After Owen spent two years at Ivymount, Cornelia started home-schooling him last year, using Disney scripts as a bridge to teach him the basics of reading and math that he'll need to get into a high school for special-needs kids in Maryland. She regularly guides Griffin, who each week tries to use the scripts to teach Owen social and life skills as well.
Like many other therapists we'd seen, Griffin was initially a little concerned about Owen's intense affinity for Disney movies — but unlike the others, he became intrigued. In fact, he had come up with an ingenious plan for Owen to protect and advise a sidekick. We had settled on Zazu, the proud but naïve hornbill charged with protecting a young Simba in "The Lion King." Owen said, "Zazu has a lot to learn."
Hence:
Educating Zazu
I, Owen Harry Suskind, agree to undertake the challenging but critical task of providing stimulating educational experiences for my good friend Zazu. This project will take a good deal of work and preparation, but should be a lot of fun and also immensely beneficial to Zazu. I agree to do this for the academic year of 2005–6.
Areas of Zazu's learning program shall include but will not be limited to:
1. Life in the world
2. How to concentrate
3. Following directions
4. Health
5. Asking questions
6. Making friends
7. Fun
8. Loving people
9. Science
10. Helping others
Signed,
Owen Suskind
We start today's therapy session in December with talk of Zazu and his progress. The focus is on contract item No. 6: Making friends.
Owen doesn't have friends, other than kids he encounters through carefully structured activities. He sees the boy next door, Nathan, the "typical" child of our close friends, one evening a week at our house for an art class. Their meetings are facilitated by a 20-something media-arts guy from the Lab School, a large, happy Wisconsinite who helps the boys make a short animated flip book. In a social-skills group run by his psychiatrist, C. T. Gordon, Owen also sees Brian and Robert, two autism-spectrum boys who are also really into movies.
But when advising Zazu, Owen suddenly seems full of advice about how to make friends.
"To make a friend, you have to be a friend," he says, picking up a line that is used at Walt's summer camp; it's something Cornelia has said to him a few times but has never heard him repeat.
"And you need to be interested in what they're interested in," Owen adds. "And then they can be interested in what you're interested in."
Owen seems to infuse the advice with feeling. Instead of just repeating these chestnuts about social skills, he seems to be really owning them. Griffin — whom Owen has dubbed Rafiki, after the wise baboon in "The Lion King" — keeps up the momentum by mentioning the "second-question rule" for keeping a conversation going, asking narrower questions: "When did you do that? Who else was with you? How did that feel?" We practice a few of those, all three of us.
Owen mentions how Zazu has trouble with contract item No. 8 — loving people — because he's "ashamed about how he failed Simba," who slipped away from the hornbill's watchful gaze and got into trouble — trouble that eventually led to his father's death.
Griffin takes the risk of asking Owen to elaborate about the fairly complex dynamic between Zazu and Simba; when you fail to meet your own expectations and disappoint someone you care about, what does that feel like? As Owen is thinking, I mouth "P-h-i-l" to Griffin. He knows immediately which scene I'm thinking of and asks Owen if this is what happens to Phil in "Hercules."
Owen starts to laugh. "Can I do it?"
Before we can nod, Owen's off and running, doing a scene in which Phil is trying to tell a crowd of doubters about Hercules's potential. We watch as Owen seems to access the emotions of Phil, Hercules and the three other characters in that scene. He ends with a plea from Hercules: "How am I supposed to prove myself a hero if nobody will give me a chance?"
As the session ends, Griffin pulls me aside. "Autistic kids like Owen are not supposed to do that," he says. "This is getting weird in a very good way."
Since Owen turned 3, the daunting, never-enough demands of autism have remained inelastic, bottomless. Not knowing what really works, or helps, makes identifying the inessentials all but impossible. You try everything. And we have: from changing his diet to gluten-free to auditory processing, when he spends hours doing high-speed computer tests while different noises ring in his ears. Lots of families run themselves into bankruptcy. We've spent about $90,000 a year on Owen. Actually, that's not so much higher than the norm — autism organizations estimate that it costs about $60,000 a year to provide adequate educational, medical and therapeutic services to an autistic child. About half of that can go to school tuitions, often with some of the money coming from public funding.
And we are just one family. There are an estimated two million people with autism-spectrum disorders in the United States, more than 500,000 of whom are children. Beneath the oft-cited incidence rate of one in 88 children is a more startling one. Because of the five-to-one prevalence of the disorder in boys over girls, one in every 54 boys is affected, a number with few epidemiological precedents. Down syndrome, by comparison, occurs in one of every 691 children.
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What we're hoping to get our arms around one night in 2010, just before Owen is to graduate from high school, is some sense of what the future — the long future — might look like.
There's a knock on our door, and Team Owen begins to arrive. Griffin, the psychologist, is excited to see Dr. Lance Clawson, the psychiatrist; they've never met, though they've exchanged reports on Owen and other patients they share. Suzie Blattner, an education specialist, has been tutoring Owen since he was 3, right around the time Bill Stixrud, his neuropsychological testing specialist, first tested him. That's 15 years. These people have helped Cornelia and me parent our son. It's a humbling thought, and one that prompts a blurring of lines between hired professional and friend.
The immediate issue is what comes next, how the autistic world and the "neurotypical" world might be fitted together for Owen. The discussion moves swiftly, between possible plans to set up a group house to college programs. There's a school Cornelia has heard about called Riverview on Cape Cod that has a program for high-school- and college-age kids on the autism spectrum. Everyone knows the school — it has a national reputation and costs about $65,000 a year — but, Clawson warns, sometimes kids return home from these kinds of programs and still end up "living in the basement."
I can see Cornelia's face fall any time basements are mentioned. The image of Owen watching videos in the basement at 50 is a waking nightmare. I'm with her on that.
But over the hour and into the next, Griffin talks more and more about Owen's progress with the Disney therapy, as we've come to call it. Of course everyone knows of his affinity for these movies, as it has been a factor in the work of every one of them. For the first time, though, we can hear them discuss, professional to professional, what's been going on in Griffin's office.
It's almost as though Cornelia and I are not there. The questions fly fast; some responses are in professional jargon. You can practically hear the whir of collected consciousness — a group of diverse experts, with 100 years of experience with autism-spectrum-disorder patients among them.
"It's not so much how he's used the movies to help with academics," Blattner says. "It's how he's used them to guide emotional growth, which, of course, is the bigger and more complex challenge."
Everyone nods to that.
Griffin cites some surprising recent breakthroughs. Owen has been whispering under his breath to sidekicks for years, having them guide him as he faces challenges. He is developing a version of "inner speech," something that typical people develop as children to "think through" behavior and plan actions, the core cognitive processes of executive function, which are thought to be deficient in autistic people. Lately, Owen has let us in on it. At our prompting, he tells us how various sidekicks would solve his problems, quell his fears. He does it in the characters' voices, seeming to channel insights that are otherwise inaccessible to him. Griffin tells the group how he has recently channeled Rafiki's voice on why change is so hard and how we manage it, and Jiminy Cricket's on the meaning of conscience and how to converse with that "voice in your head."
Last week, Griffin recalls, he asked Merlin how he would advise a boy like Owen who was concerned with high school's ending and what would come next. "So, as Merlin, he says: 'Listen, boy, whistle the graduation song a little bit every day. By the time the big day comes, you'll be fine.' "
Owen's chosen affinity clearly opened a window to myth, fable and legend that Disney lifted and retooled, just as the Grimm Brothers did, from a vast repository of folklore. Countless cultures have told versions of "Beauty and the Beast," which dates back 2,000 years to the Latin "Cupid and Psyche" and certainly beyond that. These are stories human beings have always told themselves to make their way in the world.
But what draws kids like Owen to these movies is something even more elemental. Walt Disney told his early animators that the characters and the scenes should be so vivid and clear that they could be understood with the sound turned off. Inadvertently, this creates a dream portal for those who struggle with auditory processing, especially, in recent decades, when the films can be rewound and replayed many times.
The latest research that Cornelia and I came across seems to show that a feature of autism is a lack of traditional habituation, or the way we become used to things. Typically, people sort various inputs, keep or discard them and then store those they keep. Our brains thus become accustomed to the familiar. After the third viewing of a good movie, or a 10th viewing of a real favorite, you've had your fill. Many autistic people, though, can watch that favorite a hundred times and seemingly feel the same sensations as the first time. While they are soothed by the repetition, they may also be looking for new details and patterns in each viewing, so-called hypersystemizing, a theory that asserts that the repetitive urge underlies special abilities for some of those on the spectrum.
Disney provided raw material, publicly available and ubiquitous, that Owen, with our help, built into a language and a tool kit. I'm sure, with enough creativity and energy, this can be done with any number of interests and disciplines. For some kids, their affinity is for train schedules; for others, it's maps. While our household may not be typical, with a pair of writerly parents and a fixation on stories — all of which may have accentuated and amplified Owen's native inclinations — we have no doubt that he shares a basic neurological architecture with people on the autism spectrum everywhere.
The challenge is how to make our example useful to other families and other kids, whatever their burning interest. That's what Team Owen seems to be talking about. How does this work? Is there a methodology? Can it be translated from anecdote to analysis and be helpful to others in need?
Owen, now 20, is opening the microwave in the galley kitchen when we arrive at Riverview on Cape Cod one day in April 2012. "Should I put in the Orville's?" he calls to the dorm counselor out in the suite, gets the O.K. and then emerges to help us lay out cups, juice and M&Ms on a table in the TV lounge. The students trickle in.
It's the Sunday-night meeting of Disney Club. Owen decided to start the group not long after he arrived at Riverview eight months ago. It has been a fine first year so far in their college program: He's getting a mix of academic and social challenges, has made one good friend and is building independence.
Starting Disney Club has been a highlight; he has never been a member of a club, never mind the president of one. About a dozen students come to Owen's dorm each week, settle in to eat popcorn, chat a bit and watch their favorites. A few times he described club meetings to us, and we tried to suggest activities over the phone. Then a few weeks ago, he asked if we could come out as Disney Club's parent advisers.
We always knew there were other autism-spectrum kids who focused intently on Disney — we'd met several, after all, over the years. But by starting this club, Owen has drawn together a roomful of them.
Tonight's selection is "Dumbo," a fertile tale of self-recognition and emergence. After we watch a bit of the movie, we pause it and talk about how the thing that makes the little elephant a pariah, his huge ears, ultimately allows him to soar. I ask each of them about their "hidden ears," the thing "that makes them different — maybe even an outcast — that they've discovered is a great strength."
The room gets quiet. It's clear that many of these students have rarely, if ever, had their passion for Disney treated as something serious and meaningful.
One young woman talks about how her gentle nature, something that leaves her vulnerable, is a great strength in how she handles rescue dogs. Another mentions "my brain, because it can take me on adventures of imagination."
A young man, speaking in a very routinized way with speech patterns that closely match the "Rain Man" characterization of autism, asks me the date of my birth. I tell him, and his eyes flicker. "That was a Friday."
When I ask the group which Disney character they most identify with, the same student, now enlivened, says Pinocchio and eventually explains, "I feel like a wooden boy, and I've always dreamed of feeling what real boys feel." The dorm counselor, who told me ahead of time that this student has disciplinary issues and an unreachable emotional core, then compliments him — "That was beautiful," she says — and looks at me with astonishment. I shrug. He'd already bonded in a soul-searching way with his character. I just asked him which one.
It goes on this way for an hour. Like a broken dam. The students, many of whom have very modest expressive speech, summon subtle and deeply moving truths.
There's a reason — a good-enough reason — that each autistic person has embraced a particular interest. Find that reason, and you will find them, hiding in there, and maybe get a glimpse of their underlying capacities. In our experience, we found that showing authentic interest will help them feel dignity and impel them to show you more, complete with maps and navigational tools that may help to guide their development, their growth. Revealed capability, in turn, may lead to a better understanding of what's possible in the lives of many people who are challenged.
As the Disney Club members now say, it's about "finding the hidden ears."
Owen and I are driving to Griffin's office in the summer of 2012 for a rare visit. Owen hasn't seen Griffin since Christmas break. As we drive, Owen says, let's do "that love business." Lately we've been doing this at least once a day.
"O.K., you do Merlin," I say, which means I can do the young Arthur from Disney's 1962 "The Sword and the Stone." Arthur, thankfully, has only one line.
"You know, lad, this love business is a powerful thing," he says in Merlin's reedy, old man's voice.
"Greater than gravity?" I respond as Arthur.
"Well, yes, boy, in its way." Owen pauses, considering it all, just as the wizard does in this, one of his favorite passages. "Yes, I'd say it's the greatest force on earth."
Romantic love. It's running through him, first and fresh, which is what he tells Griffin as they sit in the office. "I've fallen in love with a wonderful, kind, beautiful, soft and gentle girl, who likes the same things I like — animated movies, mostly hand-drawn, and mostly from Disney."
Griffin is giddy. He wants to know everything about Emily, Owen's girlfriend. He lays it all out: the tale of how they met at Riverview, how she's in Disney Club, their first kiss.
For most of us, social interactions don't feel so much like work. We engage instinctively, with sensations and often satisfactions freely harvested in the search itself. For Owen, much of that remains hard work. Despite his often saying to Griffin that his aim is to be popular — a catchall for the joys of connecting with other people — that goal, largely theoretical, has been like watery fuel in his sputtering engine.
Now, it's high-octane. That's what a first kiss can do. The specific therapeutic yield of this awakening is an intense focus, at long last, on social engagement — but at its very highest peak: the mysteries of how two people can be like one.
Owen tells Griffin that Aladdin and Jasmine have been helpful. "I need to give her space," he says of Emily. "That's what Aladdin learns. Jasmine needs to make the choices for herself. She has to choose, and he needs to know what she wants."
Griffin presses forward on his chair, his face close to Owen's. "But how can you know what she wants?"
Owen nods immediately. He's on it. "I have a song." He explains it is from a movie called "Quest for Camelot," an Arthurian romance a few Disney expats worked on for Warner Brothers in 1998. "The song is called 'Looking Through Your Eyes.' " He explains that he listens to the song every morning "to make sure I don't forget to see the world through her eyes."
For nearly a decade, Owen has been coming to see Griffin in this basement office, trying to decipher the subtle patterns of how people grow close to one another. That desire to connect has always been there as, the latest research indicates, it may be in all autistic people; their neurological barriers don't kill the desire, even if it's deeply submerged. And this is the way he still is — autism isn't a spell that has been broken; it's a way of being. That means the world will continue to be inhospitable to him, walking about, as he does, uncertain, missing cues, his heart exposed. But he has desperately wanted to connect, to feel his life, fully, and — using his movies and the improvised tool kit we helped him build — he's finding his footing. For so many years, it was about us finding him, a search joined by Griffin and others. Now it was about him finding himself.
"Owen, my good friend," Griffin says, his eyes glistening, "it's fair to say, you're on your way."
Owen stands up, that little curly-haired boy now a man, almost Griffin's height, and smiles, a knowing smile of self-awareness.
"Thank you, Rafiki," Owen says to Griffin. "For everything."
"Is friendship forever?" Owen asks me.
"Yes, Owen, it often is."
"But not always."
"No, not always."
It's later that night, and we're driving down Connecticut Avenue after seeing the latest from Disney (and Pixar), "Brave." I think I understand now, from a deeper place, how Owen, and some of his Disney Club friends, use the movies and why it feels so improbable. Most of us grow from a different direction, starting as utterly experiential, sorting through the blooming and buzzing confusion to learn this feels good, that not so much, this works, that doesn't, as we gradually form a set of rules that we live by, with moral judgments at the peak.
Owen, with his reliance from an early age on myth and fable, each carrying the clarity of black and white, good and evil, inverts this pyramid. He starts with the moral — beauty lies within, be true to yourself, love conquers all — and tests them in a world colored by shades of gray. It's the sidekicks who help him navigate that eternal debate, as they often do for the heroes in their movies.
"I know love lasts forever!" Owen says after a few minutes.
We're approaching Chevy Chase Circle, five minutes from where we live. I know I need to touch, gently, upon the notion that making friends or finding love entails risk. There's no guarantee of forever. There may be heartbreak. But we do it anyway. I drop this bitter morsel into the mix, folding around it an affirmation that he took a risk when he went to an unfamiliar place on Cape Cod, far from his friends and home, and found love. The lesson, I begin, is "to never be afraid to reach out."
He cuts me off. "I know, I know," he says, and then summons a voice for support. It's Laverne, the gargoyle from "The Hunchback of Notre Dame."
"Quasi," he says. "Take it from an old spectator. Life's not a spectator sport. If watchin's all you're gonna do, then you're gonna watch your life go by without you."
He giggles under his breath, then does a little shoulder roll, something he does when a jolt of emotion runs through him. "You know, they're not like the other sidekicks."
He has jumped ahead of me again. I scramble. "No? How?"
"All the other sidekicks live within their movies as characters, walk around, do things. The gargoyles only live when Quasimodo is alone with them."
"And why's that?"
"Because he breathes life into them. They only live in his imagination."
Everything goes still. "What's that mean, buddy?"
He purses his lips and smiles, chin out, as if he got caught in a game of chess. But maybe he wanted to. "It means the answers are inside of him," he says.
"Then why did he need the gargoyles?"
"He needed to breathe life into them so he could talk to himself. It's the only way he could find out who he was."
"You know anyone else like that?"
"Me." He laughs a sweet, little laugh, soft and deep. And then there's a long pause.
"But it can get so lonely, talking to yourself," my son Owen finally says. "You have to live in the world."
Source: https://www.nytimes.com/2014/03/09/magazine/reaching-my-autistic-son-through-disney.html
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