Life, Animated (32 page)

When the movie came out, I was a sophomore in high school. I rediscovered it with Owen, who was drawn to it, initially, because John Cleese (who plays Sir Lancelot) and Eric Idle (who plays Sir Robin) had both done lots of voice work for the animated movies he liked.

We watched it together and swapped dialogue. One scene that he couldn’t get enough of involved a father, a medieval lord, talking to his fey and feckless son from the tower of the family’s castle.

F
ATHER:
O
NE DAY, LAD, ALL THIS WILL BE YOURS
!

H
ERBERT:
W
HAT, THE CUTAINS
?

F
ATHER:
N
O, NOT THE CURTAINS, LAD
. A
LL THAT YOU CAN SEE
! S
TRETCHED OUT OVER THE HILLS AND VALLEYS OF THIS LAND
! T
HIS’LL BE YOUR KINGDOM, LAD
!

H
ERBERT:
B
UT
, M
OTHER
—

F
ATHER:
F
ATHER
, I
’M
F
ATHER
.

H
ERBERT:
B
UT
F
ATHER
, I
DON’T WANT ANY OF THAT
.

F
ATHER:
L
ISTEN, LAD
. I
’VE BUILT THIS KINGDOM UP FROM NOTHING
. W
HEN
I
STARTED HERE, ALL THERE WAS WAS SWAMP
. A
LL THE KINGS SAID
I
WAS DAFT TO BUILD A CASTLE IN A SWAMP, BUT
I
BUILT IT ALL THE SAME, JUST TO SHOW ’EM
. I
T SANK INTO THE SWAMP
.

S
O
, I
BUILT A SECOND ONE
.

T
HAT SANK INTO THE SWAMP
.

S
O
I
BUILT A THIRD ONE
.

T
HAT BURNED DOWN, FELL OVER, THEN SANK INTO THE SWAMP
.

B
UT THE FOURTH ONE STAYED UP
.

A
N’ THAT’S WHAT YOU’RE GONNA GET, LAD—THE STRONGEST CASTLE IN THESE ISLANDS
.

Owen would do the scene, often wanting to do the father. And then laugh uproariously. Could barely make it to the end.

And, after one such bout, with Cornelia and I present, he said, matter-of-factly, “That’s my life.”

We leaned in, and he explained:

The first castle I built at the Lab School and it fell into
the swamp when I had to leave. The second castle I built
at my next place, at Ivymount, which I liked, but that
fell into the swamp when I had to get homeschooled.
The third castle I built when I made it to high school.
That burned down, fell over into the swamp when I met
those bullies. The fourth castle, I started building when
I got that call from Jonathan Freeman. And my life as
a great Disney animator and expert began. And that
castle stood, the strongest in these islands. That’s because
it’s built on all the fallen castles.

It was humbling and hard to hear that—to hear how he placed our efforts, both in victory and defeat, as part of a sunken foundation. The homeschooling, which we saw as such a triumph, didn’t register that way for him. He wanted to be with other kids, not in some room with his mother.

And, of course, it all ranks behind the moment Jonathan called. Why should we be surprised? It’s hard to remember that Owen—like all kids, and all of us—is…
different yet the same
. His differences are so striking, that when you hit that sameness—that we are all essentially identical in our urges and needs and joys—it’s still a surprise.

When he was a tiny kid, fallen silent, I wrote that scene in the
Wall Street Journal
article where Cedric gets the acceptance letter from M.I.T., a letter directly to him, affirming his worth and capacity, and—pressing to his chest—says, “This is it. My life’s about to begin.” When he gets the letter, his ticket out of the ghetto, his mother reaches out to touch him—it’s her triumph, too—but he turns away, already gone, looking to the horizon.

Loving and letting go. It happened with Walt, and now it’s happening with his brother. His crafting of the four castles into a life metaphor, with Jonathan at the center, throws both Cornelia and I backward, to see that first phone call for what it truly was.

When Jonathan asked from the speakerphone what Owen thought
Aladdin
was about, he said, “It’s about finally accepting who you really are. And being okay with that.”

That was really Owen talking about himself, though he was using Aladdin as his surrogate.

That was the moment he saw it. Now, we could see it, too.

It was his inner hero, beginning to emerge.

A few days after the Halloween party, Owen is sitting in the kitchen with Cornelia. I’m off working. She makes dinner for the two of them. It’s been the two of them for so long, so many hours and days. She can talk to him more frankly nowadays. And she does, about ideas she has for Newfound Academy, about how well he’s done and will, she’s sure, in the days ahead.

He meets candor with candor, looking at her intently, waiting until she meets his gaze.

“I’ve decided I want to go away to college, like Walter.”

D
efine
emergence.
From where, toward what?

The only thing we were sure of was what we’d learned long ago: it only works for our son if it’s self-directed. He’d have to lead—there was no other way. And we’d have to work off of clues to support him, just as we had been since he was a small boy speaking his invented language. Now, though, the stakes were so much higher. We’re helping him plot a path away from us.

The night of his grand pronouncement about going away to college like his brother—we begin our usual effort of deciphering: is this a lark, an uninformed notion based on what Walt, his only role model, has done? Is there some other desire tucked within, of being free to go his own way, watch as many videos as he wants, have gatherings like the Halloween party, and be liberated from the pressures of the transition program, or is it just the natural passage of a child needing to leave his parents to find himself—to
become
himself?

Is it simply wanting to be like everyone else?

Maybe all those things.

What was indisputable: in an eventful six months, from Freeman’s call to graduation to the trip to Disney Animation and the Halloween party, he is edging out into the wider world. Each instance, gives us a chance to see how others reacted to him, in a first encounter, and how he responds. Our long-held concerns, that he would be off-putting and incomprehensible to the uninitiated, the non-expert, the stranger, and then treated poorly—are easing. The bullying and his regression set him back a year; he still carries the scars. But the intervention of his own internal voices—an ongoing conversation with his wise sidekicks that, once revealed, we could gently guide—help him charge back. Though he was just beginning to master the divide between feelings and behavior, he seems to be rising, ever more, to the challenge of presenting himself to people he does not know.

The complications are still vast, with him not being able to hedge or fudge in these encounters. He can only show who he is, his essence, and hope for a favorable response. But the responses are good—better than good.

And now he wants more.

Cornelia and I begin scheduling visits to college programs in something of a frenzy. This is what Owen wants—one of the first things he’s ever really requested.
How can we help him achieve it?
That is the only question. If he’s going to get accepted into some program, and be able to successfully attend next fall, many things need to improve—and fast. His expressive speech is strong, whether giving the graduation speech or talking to Disney stalwarts. Successful social interactions—something we’d been working on for years—are a whole other game. It’s the difference between monologue and dialogue, between shooting foul shots and actually playing basketball.

The big opponent: the self-stimming Owen’s been doing since he was three. It’s been reduced dramatically, of course. But it’s still there, especially when he’s not in a one-on-one situation with an ardent interlocutor, or when he’s stressed and his mind wanders. He’s made progress; he can now attend to a task, even one of little interest, for five minutes. But then he’ll break into quickstep, doing a little hand flap or throw out his arms, a bit like Jackie Gleason in that “and away we go” move from “The Honeymooners,” or Jim Carrey in a full, cartoon-character gesticulation in
The
Mask
. Keeping his attention focused and reducing stim are clearly linked—and, beyond one-on-one interaction, there’s been some success in very structured settings, like classrooms. But most workplaces and all college dorms are free-for-alls, as are shopping malls, busy sidewalks—most anywhere.

Cornelia consults with Dan Griffin, tells him the clock is ticking. Owen will probably have to visit schools for evaluations early next year, just three or four months from now.

Dan starts visiting Newfound Academy once a week, in addition to his group session with the boys. Together, he, Cornelia, and the program manager, Tyler, begin to institute various behavior modification programs, some already tried, some new, all urgent. The first feature is a “stim meter,” which rates everybody’s stims from 1 to 5 on the degree of disturbance it might cause. This is matched with something of a stim-replacement therapy, identifying an imminent outbreak of a high-disturbance stim—like Owen jumping up and pacing, clearly a code 5—and replacing it with a still satisfying but lower-disturbance stim—a code 2—like clenching fists over and over.

The satisfaction issue is important. The reason autistic kids do the stimming is it feels good reintegrating senses or settling a jangled nervous system. But it’s also related to attention. To keep it from drifting, Cornelia and Dan create a system of prompts, using the vibrate function on Owen’s cell phone. In an e-mail asking for Dr. Lance Clawson’s assistance—especially in reviewing Owen’s mix of medications—Dan writes that, “in this little Manhattan Project,” we “would love to have someone come up with a Google app that emits vibrations at random intervals that can be tweaked from afar by a computer or smartphone.” Cornelia searches far and wide for one; there’s none to be found.

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 vocal
izations 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?