by Ron Suskind
This is the way it is in our house, after all. What Owen sees in, say, Beauty and the Beast, might be different from what we see. But we share the story, itself; one of the few things we do share.
If it only were that easy elsewhere. There is little he was sharing with teachers or other students at Lab School.
The first year has been a struggle. Though both the LD kids and autistic spectrum kids wrestle—as Smith often says—with a “disorder of the way the brain organizes itself and its inputs” in regard to words, the struggle for dyslexics—the school’s predominant LD issue—is largely with the reading of words. Autism, as a pervasive developmental disorder, is well, more pervasive, especially in the way it disrupts the auditory processing of speech. For spectrum kids, basic instructions like “now let’s collect our markers,” “time to line up for recess,” or “everyone find a partner” often pass swiftly, like chocolates on the conveyor belt in that famous scene with Lucille Ball. You’ve got to box them in the proper part of the brain so they’re understood and the appropriate action is fired—begin collecting markers! When these processes are on a delay switch, the chocolates don’t hit their boxes, new ones on the belt pass through unprocessed and you end up like Lucy, with a mouthful of chocolates and boxes everywhere. And the chocolates keep coming! That’s when the teacher says, “Owen, Owen?!” He’s not the only one, but the stress builds.
And it does through Owen’s first year, until we get a call in late May that there’s a problem. He’s throwing poop.
This is unacceptable, the head of the lower school tells us the next day in a meeting. Yes, we know. But why is he doing it—we need to get to the “why.” He’s been potty trained for two years. For some reason he either isn’t asking to be excused to go to the boy’s bathroom or is so stressed, or distracted, that the issue catches him by surprise. He has always been clean conscious, not comfortable being messy, like some boys are. He has to rid himself of the accident. Hence, finding an inconspicuous corner and, well, throwing.
They say we need to do something. We say we will. And then the school year ends.
Which is why we’re sitting on the couch with him one evening in early September 1998, a few weeks into his second year at the school. We’re terrified of flying poop. One or two incidents to start this year, and he’ll be out.
But we have a hook. Each year, the classes shape their curriculum and activities around an idea—a brainstorm by Smith to help them integrate knowledge around an interest or affinity—and this year Owen’s class is called “Cave Club,” where there will be some talk of dinosaurs.
And he likes the Land Before Time movies, an animated series started by Steven Spielberg. So we try to build on that, saying that Littlefoot—the main character—always had time to go to the bathroom. He would tell the other dinosaurs to wait, that he’d only be a minute, and still everyone made it to the Great Valley. We work this for a bit.
“Do you understand about the poop problem at school, how that won’t work in Cave Club?” Cornelia asks. He nods.
We haven’t had another moment like that night with Iago—a year ago, now—where I address him as a character and he responds in his own voice. Maybe the key to that moment was the element of surprise: of the character addressing him directly as Owen. After a few moments, Owen did begin to respond as Jafar. Character to character seems more comfortable to him, as does discussing some rudimentary meanings of various scenes to help shape his behavior.
By mid-October, we’re feeling guardedly optimistic—no more poop incidents—but still trouble in class. He’s talking under his breath, often in the voices of his characters, when he should be listening or participating. On a particular day near Halloween, we get a report he’s been reprimanded for this, and had a “time-out.”
I see him sitting, glumly, on the rug in his room and think of The Sword in the Stone, just about the richest terrain of any of the movies. Like The Jungle Book, Aladdin, and The Lion King, there’s a male hero—a bit more to work with. But the affectionate guidance Merlin offers the orphaned Arthur is right out of any parenting playbook. There’s a particularly good scene in the movie where Arthur is reprimanded by the feudal lord he works for and loses out on a trip to London.
I duck my head in the door. “‘I know that trip to London meant a great deal to you,’” I say in the gentle, reedy tone of Karl Swenson, the actor, long dead, who voiced Merlin. It’s easy—basic British.
Owen looks up and smiles. “‘Oh, it’s not your fault. I shouldn’t have popped off. Now I’m really done for,’” he says as Arthur.
And off we go:
“‘No, you’re in a great spot, boy. You can’t go down. You can only go up from here.’”
“‘I’d like to know how.”
“‘Use your head. An education, lad.’”
“‘What good will that do?’”
“‘Get it first. Then, who knows? Are you willing to try?’”
“‘Well…what have I got to lose?’”
“‘That’s the spirit! We’ll start tomorrow. We’ll show ’em. Won’t we, boy?’”
“‘We sure will.’”
Owen and I have never had a conversation like this. But as Merlin and Arthur we do. It has a knowing, sentient quality. The grammar is perfect, as is the word choice. Is this just a more complex, interactive version of echolalia, or are we really talking? Can’t say for sure where to draw that line.
But I’m certain about one thing: the warmth passing between the characters in the movie—one Owen has watched a hundred times—now passes between us. I can feel it.
Walt’s team has just batted and now he’s putting on his catcher’s gear, getting ready to warm up a new pitcher. It’s springtime, 1999.
Cornelia hops off the lower bleacher to check on Owen, running to and fro in a playground area next to the field. She was constantly shifting her gaze between the two boys. A few minutes before, she’d caught a glimpse of a man—a father from the opposing team—looking at him, clearly wondering what was up. She tried to ignore him—she wanted to see Walt bat, to focus on that. But now the guy’s staring again.
“Hey, honey, what are you playing?” she calls to Owen, as she approaches the sandbox and swing set. He ignores her until she gently takes his hands and, squatting, looks at him intently. Do it right, he can look back with equal intensity.
“Gargoyles.”
She knows that means The Hunchback of Notre Dame, the Disney movie he is enamored of that spring. “Which one?”
“Victor.”
“Which part?”
“When they dance with Quasimodo.”
There were two other gargoyles: Hugo (to complete the homage to the writer of the famous novel) and Laverne.
“Can I do Laverne?” she asks.
“No, I’m okay.”
“All right, I’m going back to Walt’s game. I’ll be right over there.”
Owen looks over toward the bleachers, nods, then spins back into a song and dance routine about an outcast in fifteenth-century Paris.
At this point, the value of the Disney role-playing—now eighteen months along since that night with Iago—is indisputable. It’s a hidden kingdom, and it’s important to tread through it carefully. We’re interested in his world, but not in a clumsy and disruptive way—stumbling in and knocking over furniture. We’re curious and respectful. When we ask him questions, about what characters do and feel, it prompts him to talk. The result is that his pragmatic speech is improving, along with islands of more complex expression.
Owen, running about, reciting scenes in a public park, is as oblivious to what he looks like as he’s always been. It’s our view that’s changed—our view of him. There was reason to his rhyme.
Cornelia walks across the grass on her way back to the bleachers. But not our bleachers. She was walks directly toward the gawker, who turns as she approaches, like someone spinning away from a blast.
“Can I help you with something?!” she says, hands on her
hips, glaring.
“Huh. What?”
“It’s impolite to stare.”
“I wasn’t, I mean I’m not…umm…staring.”
“He’s different, okay. And that’s the way he plays. Do you always stare at special-needs kids?”
He pauses and starts to mumble something but she doesn’t listen. She’s already turned on her heel. It was the first time she ever confronted anyone and she’s shaking from the exchange.
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. 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.
Walt is with Owen on a Saturday in early June 1999. They’re milling about, fingering books at the DC Public Library about a mile from our house. Or they were a minute ago, when I last looked.
I hear a man raise his voice—a constrained attempt at volume—and turn in time to see a scene unfolding. Actually, the first thing I see is how wide Walt’s eyes are.
The sotto voce shouter is the librarian, who is speed walking over from the checkout desk: “What are you doing?!”
I have a good span of carpeting to cross from Contemporary History to get to them, about five seconds in a slow trot, and I watch the librarian, a youngish, bespectacled man, looking—in urgent need of explanation—at Walt, then at something low, which is out of my line of sight, then he looks back at Walt, whose eyes grow even wider. As I get there, Walt turns and runs out of the library.
I see what they’re looking at: Owen’s butt and kicking feet, sticking out from a low shelf. He’s parted the books and wedged nearly his whole body in the dark space between the bookcases.
I know immediately it’s The Pagemaster, a 20th Century Fox movie Owen’s been fixated on. Along with Disney favorites, he’s folded in a few movies—including this one and Space Jam—that mirror the growing oddity of his life and that of the whole family: combinations of animation and live action. First released in 1994, The Pagemaster was all but designed for him and his fast-shifting reality. Its main character, a cautious boy named Richard Tyler—played by Macaulay Culkin—gets trapped in a library on a stormy night, only to meet a mythical character played by Christopher Lloyd. That’d be the Pagemaster, a wizardly type who shepherds the boy into the stacks and a world—hidden between the bookshelves—where the great stories, like Dr. Jekyll and Mr. Hyde and Moby Dick, come to life. The boy’s guides are three talking books, each representing genres—fantasy, adventure, and horror—who lead him on a journey to face his fears.
The movie is one of the reasons we’re at the library today. Looking for an activity for both boys on a Saturday afternoon, Owen jumped at the suggestion of a visit to the library.
This is the flip side of our role-playing. It has no natural boundaries. The world now is Owen’s stage. I pull him from between the shelves and sheepishly apologize to the stunned librarian. “It’s just this movie he’s really into about a library…I’m sure you’d love it.”
Outside, I track down Walt. He’s sitting on a bench, shaking his head.
“Dad, does he have to be this way?” he says, in a kind of plea.
I’m not sure what to say. I talk a bit about this being the way Owen was born. “He didn’t do anything to be like this, and I’m sure if he could choose, he’d choose not to. But he has no choice, and we don’t either. We just have to be there for him.”
Walt knows all this, but it doesn’t help. He’s really upset. This has clearly been building for a while. “He has no idea how you’re supposed to behave. None!”
I agree with him. We both know he’s right. I just sit with him for a moment, while he begins to calm down. He was angry when Owen and I got outside. Owen begins to dance nearby on a patch of grass; I put my arm around his older brother’s shoulder. “You know him better than anyone, Walt. It’s just the way he is. I know it’s hard, but we have to find a way to embrace him, to celebrate him, just like people embrace you. He’s lucky to have you as a brother.”
As we drive off a few minutes later, I feel dots connecting around the words “supposed to.”
That phrase Walt just used, I’m using a lot lately. Since A Hope in the Unseen came out a year ago, I’ve been giving speeches where people invariably ask how Cedric defied both the low expectations and
destructive codes of behavior that so defined his school and neighborhood. There are various reasons, having to do with his upbringing, his mother, his faith, and the way his pariah’s status divorced him from social norms. But he’s a rarity. Recent research on something called the “stereotype threats and boosts” shows the astonishing power of expectations carried in cultural stereotypes—African Americans are athletic and spiritual; Asian Americans are math whizzes—in determining how a hundred babies, all identical in basic human capacities, end up looking so different as adults. From the earliest age, these expectations shape how others see us, how we see ourselves, and the capabilities we develop as we’re encouraged, or discouraged, by the eyes of others.
These “supposed tos” arise, of course, from the fundamental human capacity to swiftly size up the surrounding context and our place within it.
It’s the quality that most distinguishes Walt from Owen.
It’s hard-wired and instinctual in Walt, as it is in most people, and already well along in shaping his behavior and identity.
Owen’s specialists say his inability to do this is his most basic, and defining, disability. In autism circles, it’s called “context blindness.”
He has no sense of the “supposed tos” because he can’t read all those looks, expressions of favor or disfavor, the ripple in the crowd, borne within each passing moment that builds into a life. That means he doesn’t know what you’re supposed to do in a library—as opposed to a playground—or what movies most eight-year-olds are watching. The questions researchers are busy asking are whether this deficit is a matter of will or capability; can it be developed in a person; and if so, how? But day-to-day facts are clear: like a growing number of autistic spectrum kids and adults, Owen is driven, shaped, and guided by what bubbles up, often quite mysteriously, from within. There are plenty of self-directed urges in everyone. It’s just that our impulse instantly slams against our lightning-fast assessment of context. The atmospheric zone created by that collision is behavior.
