by Ron Suskind
But, immediately, this behavior-modification machine starts running on the high-octane fuel of desire. Owen’s desire. Through many years, and the many efforts to reduce stim and heighten social engagement, Owen’s stated goal was always “to be popular.” It was often heartbreaking to hear. He’d say it when he, literally, hadn’t a single friend. Most of his interactions were with extended family—that didn’t count. He had two friends at school, an insular trio with little social clout. But he was starting to understand how popular felt; like that warm wash of applause at graduation; like the girls from art class hugging him at the Halloween party, or him introducing the guests, many of whom were acquaintances or friends of friends, to his Disney mentor, Jonathan Freeman. Making those introductions felt just fine.
The operative word, now, is volition. In Webster’s definition of “an act of making a choice or decision,” it lists this example: Tourette’s syndrome is a neurological disorder marked by recurrent tics and vocalizations that are beyond the sufferer’s volition or control.
That would apply to many people with autism, especially those who are—in the therapeutic term of art—heavily “involved” with little or no speech. Many behaviors are beyond being controlled. And maybe they shouldn’t be. For Owen, too. But his mix of capacities and dawning aspirations have hit a point where, in more and more areas, he can be volitional.
The word Owen decides will work is bingo. Not a word you hear every day, but not one that draws special notice. It’s a code word. As Dan tells Lance in his e-mailed progress report, when Owen hears the word, he has recently learned to assume a “volitional calm facial and body posture that replaces a class 5 stim.”
This explains why, in the weeks leading up to Thanksgiving, shoppers at the Giant Foods Supermarket near Chevy Chase Circle (in nearby Maryland) feel like they’ve wandered into a bingo parlor. Owen is trying out for a part-time job there. He’s in uniform—the Giant Foods yellow shirt, black apron, and cap—helping in the checkout lines. Ten paces away, Tyler fingers magazines on the rack or fumbles with change in front of the coke machine, muttering “bingo.” Owen’s heightened hearing capacity for certain sounds—any word used by Disney, Cornelia and I whispering—now includes bingo. He knows he needs to get stim under control. How you feel…is who you are. But how you behave…gets you what you want. He’s beginning to make choices. His own choices. Not ours.
Cornelia hears from a friend about a documentary she’s got to see that aired briefly on Showtime during the summer. In a coincidence, another friend knows the filmmaker, has his contact information, and, by mid-November, she’s opening an envelope with a disc and slipping the film, Dad’s in Heaven with Nixon, into our DVD player. It’s a late-night viewing—Owen’s asleep. This is for us. The main character is an adult autistic man, just a year younger than the two of us.
Respect denial? It asserts itself at every stage. For years, we wouldn’t use the word autism. We came around. But, even now we had never gazed upon a fully grown and mature man with autism. Ever. Couldn’t bear to.
It’s not as though I hadn’t seen Owen as an adult. I had…in my sleep. It’s painful to admit, even to myself, but starting a year or two after the autism’s onset, I started to have dreams of meeting Owen at some later age, as though nothing had changed. He was typical. In the first dream, I picked Owen up from soccer practice. He jumps in the car, ruddy from exertion and a little sweaty. He was a few years older than his real age—right about Walt’s age—but it’s him. Curly hair, same face, slim, there in the jersey and cleats, telling me how he scored a goal and asking me what Mom’s making for dinner, all very nonchalant. We chat as I drive, just like I talk to Walt.
In another dream—one I had a few times when the boys were both teens—Owen had just driven home from a dance. He flips me the keys, says it was a great night, and smiles a rosy-cheeked grin, hinting at some unmentioned teenage discoveries. Each time I’d wake up feeling guilt, like I’ve betrayed him, the real Owen. But that doesn’t stop the dreams.
And in one, around the time of the bullying, I finally met him as a man. I was my current age, but he was in his early thirties, flying into Washington after a business trip. He looked great—in a suit, dapper, wry, quick smile, the curls trimmed close and his face starting to look a bit like my father’s. He alluded to a wife, a baby on the way, and asked about how my mother—his grandmother—was doing. I told him she was a few years along with the dementia and we planned to move her up from Florida—which is what was actually happening at the time of the dream—and he said that that would be good, and he’d be able to see her more often. I woke up from that one, the last of these dreams, feeling pathetic, remorseful. I blamed it on my mother (I could find a way to blame her for just about anything) and how I was raised under her motivational methodology: that I’d be loved more if I were successful, with her withholding praise and setting up one specter after another of future perfectibility, ever beyond my reach. Part of me resented that, even if I knew it had always quickened my step out of the starting blocks. And, here, I was doing the same thing, conjuring unattainable avatars for Owen, despite being fully aware, and at least consciously accepting, that he would never be anything like that curly-haired man, filling me in on his busy life.
But what would he be like?
A few minutes into the film we’re looking at someone who seems to be a reasonable extension of Owen’s line, cast forward thirty years. Cornelia and I are on the sofa in the basement, and she grabs my hand when we hear fifty-year-old Chris Murray say, “I’m a very great artist and I’m very talented,” in a man’s voice a touch more routinized than Owen’s, but close. It’s like a wave crashes over us; we struggle to get upright before the next one hits.
The filmmaker, Tom Murray, the subject Chris’s older brother, narrates a montage of passing photos, home movies, and recollections from his mother and six siblings about Chris. They basically describe our life with Owen—as though Walt is the guide. In the film, the two Murray brothers, both now in middle age, meet in New Haven, Connecticut, where Chris lives in a small apartment there, works at a health food market, and creates intricate urban landscapes, every window on every building and always on sunny days. It was an artistic affinity he suddenly embraced after a heavy blow: the death of the family’s angry, bipolar father in middle age. Chris’s paintings sell in galleries; they carry the same expressive—and relentless—precision as Owen’s sketches.
The connections are eerie, from the way Chris took up art after a setback, like Owen, to Chapel Haven, a school Chris went to that Cornelia and I are due to visit next month. We’re not only glimpsing what may be Owen’s future, but our own. This is really the portrait of how Chris’s autism affected each member of a large, wealthy Irish Catholic family who ran in the same circles as Cornelia’s family, led by a mother “who never stopped believing” in Chris. The eighty-two-year-old woman even bears a unmistakable resemblance to Cornelia’s mother, creating a wrenching video mash-up, as though Cornelia’s mom—a woman who always believed in Owen with unflinching fervency—is the one raising the autistic child, speaking directly to the woman now holding my hand on the sofa.
By the movie’s finish, the white-haired Janice Murray—after a half-century caring for Chris—is trying to prepare him for the day when she won’t be there. “Don’t…don’t die Mom, please,” Chris says, his voice cracking, as Cornelia is overcome. I am, too. Does love die? It’s a question Owen might ask. No, often not, I’d tell him. But everything else does. And you miss them terribly when they go. You turn, though, to other loves that hopefully you’ve found, and friends, and the call of life, however you’ve filled it. But I know what Cornelia’s thinking, her face wet beside mine. Who will care for him? Who will know that he’s not angry, just confused? Who will be there, to remember which voice he’s doing and then offer the next line?
Then we hear what the film’s title means. The father hated Nixon, among his many wrenching animosities. “He’s in heaven with Nix
on,” Chris says, near the film’s end. “They’re hanging out. Playing poker and eating up meals and watching TV.” Improbable wisdom—or maybe not so improbable—so much like Owen and his sidekicks.
Cornelia and I don’t sleep much that night—we just talk. At a very late hour, we’ve worked our way across the many characters, to the filmmaker’s final insight about how, in terms of happiness, his autistic brother “has much of that stuff all figured out;” and “is guiding me,” Tom Murray concludes, “by just being who he is and living his life the way he does.”
Bleary-eyed, we slip into a conversation about how all the studies show that happiness is a comparative issue, at least once the basics of food, shelter, and clothing are handled; a calculus of identifying one’s peer group, and one’s rank within it (often an equation of more negatives than positives), or finding a place within a community, people you connect with. We agree that Owen has done that for us. Or we’ve done it for ourselves. And then agree it doesn’t matter, even if we could draw that line—a welcomed respite of the incalculable that ushers in sleep.
A week later, Walt trundles up to our bedroom for a forced viewing of the movie.
Cornelia’s extended family has crowded into our house for Thanksgiving and she’s decided they should see it. Her two sisters and their spouses settle in, along with Walt and a few cousins. They’re all attentive, though Walt is the only one who, like us, can step into the shoes of the characters; in his case, the main character, Tom, the filmmaker. What’s on-screen is an unfolding nightmare. He looks over at us, trying to gauge our reaction.
He’s a college senior, just turned twenty-two, home for turkey during a tough semester. He worries plenty that, someday, it’ll be him taking care of Owen and a pair of aging parents. He doesn’t need this movie to paint a picture for him. After twenty minutes, he looks for an opening to slip out.
The one person who’s not been asked to attend the bedroom screening is Owen, who’s in the basement. He’s watching Pocahontas—part of his annual Thanksgiving viewing. He has a lineup of movies for each holiday: Halloween (The Nightmare Before Christmas, Tim Burton’s Sleepy Hollow), Christmas (“Charlie Brown’s Christmas,” “How the Grinch Stole Christmas,” It’s a Wonderful Life, Home Alone). Wouldn’t be a holiday without them. It’s not just the themes. He once explained to Walt that it connects him to each holiday across the years—all their Thanksgivings, since he was little—where he was, what he felt.
“Hey, Ow.”
“Hi Walter. Want to watch Pocahontas with me?”
“Sure, but pause it for a minute.” Owen sometimes likes to talk when one of his movies is running, but only about the movie.
Walt came home from Penn State for the weekend a month ago, and picked Owen up from Sunday art class. Something dawned on him on the drive back to State College, Penn State’s home.
“So, Owen—you know those girls from art, that pretty blond one that’s always talking to you.”
Owen nods.
“She’s at Sidwell. I know who she is. And here’s the thing—she drives.”
Owen looks at him. Nothing registers.
“So here’s what you do. Once you get to art next Sunday, tell her you may need a ride home. And ask her if she’d give you a lift. And if she says yes, slip outside for a minute, call Dad, and tell him one of the girls is driving you home. Dad’ll get it immediately—he’ll love that.”
Owen’s excited to see Walt excited, but he’s not sure why.
He’s running through the arithmetic—ask the girl for something he doesn’t need, and Dad will be happy?
“Does Dad not want to pick me up?”
“No, no—Dad’s happy to drive. This is about getting what you want.”
Owen looks at him quizzically. “What?”
Walt pauses, regroups.
“Wouldn’t it be fun if that really pretty girl, who seems to like you, drove you home. Just the two of you in her car. Wouldn’t that be fun?”
Now, he sees. “Yes, it would be!”
Walt feels a surge of victory. Owen is not going to be that lonely fifty-year-old man in the movie, hanging out with his mother.
“And, listen. You and her in the car. Who knows where it’ll lead?”
Owen smiles—he knows this answer.
“Home!”
Owen told us long ago, that the sidekicks’ role is to “help the hero fulfill his destiny.” As he works at defining destiny, we settle ever more into the role of sidekicks.
Cornelia takes easily to it, still holding onto a bit of the shy kid she once was, never comfortable being the center of attention. I was raised thinking the role of hero was the only role you’d ever want; spoon fed it from the start, with mother as coach: hero isn’t everything; it’s the only thing.
But I’ve been taught otherwise, by parenthood and our special circumstances, with the lessons ramping up when Owen was three. But that period—nearly two decades, stretching back to our days as young marrieds, raising two small boys—is coming to an end.
It’s early April 2011, and Owen has been accepted into Riverview School, an innovative secondary school/college program on Cape Cod with two hundred kids, a campus near the beach, a full run of facilities and activities. He’ll be in a program called G.R.O.W. (Getting Ready for the Outside World), which goes all the way up to age twenty-two. The usual college calendar of holidays and breaks will apply. Roommates. Dining hall. Requirements and electives. A real college experience.
In just four months, we’ll be packing him off and having that moment at the dorm, where we make up his bed, give him the teary hug, and get in the car.
But every day now feels like drop-off day, carrying that immersive sensation of a big river, cool and strong, rushing around you.
Which is why we’re in California.
Owen wanted to come on one last trip to the dreamscape of Los Angeles. He now says, like a chant, that someday he’ll move here to be a Disney animator. We told him that what he’ll learn in college over the coming years will—if he works hard—make the possibility of a Hollywood ending that much more real. He asked if we could go one last time for “inspiration”—that’s the word he used.
Cornelia wanted to visit her best friend from childhood, who’s living out there, and who she so rarely saw. So it was set. We still controlled his schedule, without worrying about when he’d be off for Christmas vacations or spring breaks. It was a matter of volition.
Sidekicks, after all, have choices, in carrying forward their purpose.
Where Owen’s self-definition currently rests, within this construct of his own making, remains unclear. It’s something he’s been working through for years, in the deepest of the deep wells. He was clearly settled into the role of sidekick at eleven, drawing furiously in his pad and—and, as “the protekter of sidekicks”—ensuring that “no sidekick gets left behind.” At fourteen, he cleanly stated the starting point of his movie, wherein twelve sidekicks, he among them, would face obstacles that would force them to find the heroes within themselves.
I think it’s fair to say that he could have scarcely imagined the challenges that awaited him in the coming years, or how he would come to rely on certain sidekicks to advise him—to guide him, a fel-low sidekick, just as they tend to direct the hero—to get him this far.
In some ways, further than even he could have imaged. As of the morning of April 7, that distance traveled is about to include a second trip to Disney’s animation headquarters, and an office one step above where he ventured the previous year.
The “Sidekicks” write-up—basically, Owen’s life story along with a few finishing paragraphs suggesting it be made into some sort of a movie using animation mixed with live action—had made its way to the office of Don Hahn. He’s one of the most successful producers on the Disney lot—the producer of both Beauty and the Beast and The Lion King, two of the biggest movies in the company’s history. He also produced The Hunchback of Notre Dame, in 1996; was associate producer o
n Who Framed Roger Rabbit, in 1988; and, most recently, produced a series of award-winning feature films under the banner Disneynature.
We’re here for a few days and spent yesterday at Disneyland. Tomorrow, Owen will go to Universal Studios. We’ll do a few other things he prizes in the gritty mecca, like go to the Hollywood Wax Museum on Hollywood Boulevard and drive up the twisting roads to get as close as is allowable to the famous HOLLYWOOD sign in Griffith Park.
Today we meet Don Hahn, though it’s not clear what kind of meeting it is. After our visit last summer with the animators, Don Hahn read a copy of the sidekicks write-up. He agreed to meet with Owen and me on our family trip west. But is this a social call or a pitch meeting? Owen has become a curio around Disney. But since Owen told us of the “four castles”—revealing how central the first encounter with Jonathan and last summer’s lovefest with the animators was to his budding identity, his personhood—our view is that any encounter with a Disney honcho, for any reason, is a golden moment. He’ll live off of it for years. Maybe forever.
In the rental car, driving onto the Disney lot on Alameda Avenue, I’m thinking of the conversation we had after that session with Dan Griffin, the one where Owen told me how his sidekicks were doing in the dark forest, and how—in that secret story, as well as the parallel story of his life—the inner hero emerges. He said it clearly that day: the making of “a movie that saves the world.”
But describing the concept of a pitch—of selling oneself and one’s idea—is like chatting with him about quantum physics; grasped or not, it’s a transactional engagement that affronts every chromosome in his being.
I fall back on Owen’s lexicon: “You know, he makes the movies—he helps decide which ones. Maybe you could tell him more about which sidekicks are in the forest, and what they’re up to. He might be interested.”
