Authors: Ron Suskind
All this becomes important for parents in surprising ways, allowing for the notion that the autistic person isn’t less, but different, carrying both thorny challenges and concomitant strengths. But knowing these whys—why a person is the way they are—is of only modest value in a daily struggle that rests on
what
and
how
; what will work to help them live better lives, and how to manage it; a parent’s hour-to-hour campaign to build in our their obsolescence.
In terms of the oft-cited Heisenberg Uncertainty Principle—the energy generated by the observation of a particle in motion changes its path—there are few instances where observation alters outcomes to match that of a parent and a child. Now, multiply that constant by the special circumstances of our intense, round-the-clock observation of Owen, where—like so many ASD parents—we soon became the unmatched experts in ways to prompt him and press him, on what references worked and when, and on how to redirect him and when to let him blow off steam.
Across a decade and a half, we tried to edify professionals—teachers, psychiatrists, therapists—with what we were learning so that they could match our knowledge with their expertise. The point was that they
weren’t us
. If things worked as we hoped, the need for this constant exchange of information would diminish, as Owen’s ability grew, to deal productively and happily with people who may not know much about Disney movies; mixed results, there.
But there was no real choice. If he was to live in some realm beyond our home, even one with boundaries and careful controls, he’d need to be able to engage competently with people who knew little about him and were not experts in directing his path or helping him discover himself.
Owen will have to do it on his own.
Of course, the use of his affinity for Disney from his earliest days, and in recent years ever more so, is something of a proof of neuroplasticity. His brain was using Disney to get around the blockages of autism, to
find a way
. It was using Disney to discover, itself; just as he was using Disney to discover himself.
Could he develop or discover ways to carry that focus, that energy and acuity to areas—subjects, people, venues of all varieties—that were unfamiliar or uninteresting? Hence, the great struggle with trying to teach autistic kids. How do you get them off their island—of whatever affinity—and into the main.
But a bridge is being built on Sunday mornings with Maureen in her artist’s den. Part of it is being constructed on the sketch pads and canvases. She is helping him loosen the reins that had tightened around his drawings as his skill level rose—an almost fierce precision. Each session, she has him start with a character sketch as a warm-up. She says, “Yes, perfect, but now let’s pick another character and take him somewhere new, mess him up, have him wear some new colors and texture. Draw some things around him.”
The Disney characters, his alter egos, are traveling to new places. So is their draftsman. And that’s where the girls come in.
For twenty-five years, Maureen has been mixing and matching teenage artists in this studio, including a wide pallet of kids who live more vividly on their pads than anywhere else. During the two-hour Sunday session, she makes sure the kids get up to look at each other’s work, say how it makes them feel.
That’s what happens, as each girl stops by Owen’s cozy corner and looks over his shoulder. He continues to look down, as, one after another, they place a many-ringed hand on his desk’s edge and lean over him, hair falling, and tell him how his drawing makes her feel, how this character or that may have scared her as a kid, or made her sing, and what an amazing artist he is.
After a few weeks, Maureen whispers in his ear, “If you want them to come look at your work, you have go look at theirs.” And he does, looking at the still lifes of fruits and flowers, charcoal sketches of bucking horses, and the muted paintings of homeless ladies and forlorn children, and then tells the girls how each picture makes him feel. He doesn’t say much. But each word is one word more than he’s spoken to pretty, typical girls since puberty hit.
At the same time the girls are stopping by his desk—in early 2010—he is working hard in history, a yearlong class, and a focus for his senior year. In an assessment sent home by the teacher, we see the usual mix: his conscientiousness in completing homework and preparing for tests, but also how he requires “frequent reminders to stay focused.”
Other notes point out Owen “often requires encouragement to answer questions more thoroughly” and how graphic organizers were helpful in “his developing more organized and perceptive responses.” The class covered all of U.S. history, the basic fare that citizens should have at least a passing familiarity with: birth of the nation, slavery, the Civil War, robber barons, the Great Depression, both World Wars, President Kennedy, right up to Vietnam.
Owen has never been a big fan of any of this. Each one of these historic passages is either a trial or a tragedy. Save some connection Cornelia or I could find to hook them to a Disney movie, he didn’t see the point of any of it; it happened a long time ago and has nothing to do with his life. The ugliness of each chapter affronts him; he turns away, offering the minimum.
But at the bottom of the teacher’s assessment, there’s something odd.
“Owen uses his artistic talent to help him understand and remem
ber historic events. At one point, he drew cartoons showing poor farmers
and slaves, and others about factory workers. The details of the cartoons
were accurate. However, of greater note were the cartoon characters’ emo
tionally expressive faces—these, in and of themselves, provided much of
the full meaning of each of these issues. These cartoons were on the bulle
tin board in the classroom for a period of time. Everyone who saw them
commented on how moving these facial expressions were.”
Everything in the preceding paragraph represents a first. It shows the way the bridge from Maureen’s art class leads to the school. There, he begins to use his art, nourished by Maureen and encouraged by those girls in her “hut,” to help him make sense of the hard-to-fathom traumas and triumphs of history, even ones he finds repugnant. His brain found a way, and the rest of him followed.
And we didn’t have one damn thing to do with it.
“You should grab a few chairs from the dining room,” Cornelia calls from the kitchen. She’s getting the coffee and desert items pulled together. I move the dining room chairs into the living room.
She slips by me carrying the cheesecake. “This is going to be one expensive party,” she quips.
“Hmm. How expensive?”
“You don’t want to know.”
“Yup. You’re right.”
That’s the way our life goes. I stick with revenues. She handles expenditures. Both jobs have their particular stresses, though it’s fair to say the cost-side analysis drives the equation. Since Owen turned three, 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, where he spends hours doing high-speed computer tests while different noises ring in his ears. Lots of families run themselves into bankruptcy. Though divorce rates are no higher than the norm, families tend to either break apart or pull more tightly together. But every family knows the crush of constant pressure. Cornelia has a joke that vacations should be covered by insurance under mental health. If only. Seven trips, thus far, to Walt Disney World. Now, when we call, we get switched to some sort of telephonic concierge—I imagine in some plush office at the call center—who gushes, like someone handling high rollers in Las Vegas, “When will you be coming back!”
The vacations, though, are a rounding error when compared to about $90,000 a year we’ve spent on Owen. Actually, that’s just a bit higher than the norm—autism organizations estimate it costs about $60,000 a year to provide adequate educational and therapeutic services to an autistic child; about half of which, in terms of school tuitions, often comes these days from public funding.
We didn’t have public public funding for much of Owen’s schooling and Cornelia’s round-the-clock efforts, the key ingredient, are only measurable in opportunity costs. But the seventeen-year totals of both time and money are not something we think about. We just push forward, knowing this is just the way it is—and probably will be for quite a while.
But that’s what we’re hoping to get our arms around tonight: some sense of what the future—the long future—might look like.
There’s a knock on the door and Team Owen begins to arrive. Fifteen minutes later all six are comfortable, chatting. Dr. Dan Griffin, the psychologist, is excited to see Dr. Lance Clawson, the psychiatrist; they’ve never met, though they’ve exchanged reports for Owen and other patients they share. Most everyone else knows each other, as leading specialists in the area. And all of them are linked through Owen. Suzie Blattner, the education specialist, has been tutoring Owen since he was three, right around the time Bill Stixrud first tested him. That’s fifteen years. And for this six, there is another six that everyone knows—and periodically mentions—that have cycled in and out over the years.
These people, and those not present, 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 colleague and friend. That’s why Cornelia’s line about how much a two-hour meeting with all six will cost—in fact, about $1,500—is spoken at least half in jest. These relationships seem anything but transactional; we pay them all without a second thought, and—as opposed to the parents of Owen’s friends—see some of them socially. After all, there are things we share, as members in good standing of the neuro-typical world, who carry significant knowledge of autism.
The immediate issue is what comes next—how the autistic world and neuro-typical world might be fitted together for Owen—with only five months until graduation. The discussion moves swiftly, between possible plans to set up a group house to college programs we’ve seen, and some we should. There’s a school Cornelia has heard about called Riverview on Cape Cod up in Massachusetts that has a program for high school- and college-age kids on the spectrum. Lance is down on the place—he’s known kids who’ve gone there. It’s $65,000 a year, he says, “And three years later they’re back in the basement—nothing’s changed.”
Cornelia’s becomes impassioned. “What kind of life is he going to have? If he lives in the basement, he lives in the basement. We’ll always be there, in every way for him, until the day we die, and pray God, we live a long time. We just have no sense of how this looks twenty years from now.”
But no one knows. The breadth of the autism spectrum is matched by a spectrum of outcomes. Some of them get married. Most don’t. Some have jobs, and live a quiet, regimented life with routines they come to rely on. Some live in group houses and do odd jobs. Many yearn for love, and are unrequited. Relationships are hard, for anyone.
“A lot of young adults—and even not so young—live at home,” Lance says, “with parents—and sometimes aging parents—and they give them independence, like the separate entrance to an apartment 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 fifty is a waking nightmare. I’m with her on that.
But everyone agrees that there’s been strong progress, especially since Patch of Heaven and high school.
“He’ll always test badly,” says Bill. “And that’ll…hold him back. People will look at his scores and make assumptions that are wrong but hard to disprove. In terms of square pegs and round holes, kids like Owen aren’t even pegs. They’re spheres. They roll, often brilliantly, but on their own path and own accord. Try to test for that.”
But over the hour, and into the next, Dan talks more and more about the Disney therapy, as we’ve come to call it. Of course everyone knows of his affinity for these movies—it’s been a factor in the work of every one of them; Suzie helped Cornelia develop Patch of Heaven lesson plans, using Disney; many have sidekick drawings from Owen framed in their offices. For the first time, though, we can hear them discuss, professional to professional, what’s been going on in Dan’s office.
It’s almost as though Cornelia and I are not there. The pointed questions fly fast; some responses are in professional jargon. You can almost hear the whir of collected consciousness—six diverse experts, with one hundred years of experience with autism spectrum disorder patients between them.
“It’s not so much how he’s used the movies to help with academics,” Suzie 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.
Dan cites some surprising recent insights Owen has channeled, of course, through various voices: Rafiki on why change is so hard and how we manage it, Jiminy Cricket on the meaning of conscience, and how to converse with that “voice in your head.”
Last week, Dan recalls, he had asked Merlin how would he advise a boy like Owen who was concerned with high school 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.’”
At that point, they all seem to notice that Cornelia and I are in the room.
Bill Stixrud turns to me, and says, “Have you ever thought about writing a book,
The Wisdom of Disney, as Told by Owen Suskind to
His Father
.”
I’m about to respond in full, but I don’t. I just say in a polite way. “Yes, well, we’ve thought about it.”
That phrase stopped me:
the wisdom of Disney.
Then I look around the room, face to face, take in everyone’s gaze, and murmur, “I’m not sure if the wisdom is with Disney, though.”
Of course, we’d thought about a book from time to time, but not until Owen was old enough, and able enough, to fully participate. And certainly not about Disney being a repository of wisdom.