by Ron Suskind
We had been introduced to her by a friend with an autistic son, who may join our prospective transition program. And she’s been the find of the year.
Maureen, as eccentric as her studio, views Owen as a creative colleague. She calls him an artist. She’s one, too. So are the girls, who look up from paint-splattered tables, downstairs and down from the second-floor loft, and call out his name. It’s an artists’ den, with an ancient chandelier, a fireplace, artwork hanging from any surface that’ll support a nail, sliced fruit and cookies, and a prized, comfy chair in the corner tucked beneath strung beads and small papier-mâché figures hanging from the underside of the stairs. That’s his chair. Beside it is a small low table where Maureen sets out art supplies that seem to have shaped themselves to Owen’s hands in the past three months.
On Owen’s first Sunday visit, back in September, Maureen looked at his sketchbooks of Disney characters—declared them fine art—and literally walked into his head. She had him bring his thick Disney animation books the next week.
Disney animation techniques emerge from a variety of artistic traditions, different styles in different eras, that she could instantly deconstruct. She saw patterns between which characters he was drawing, and how they made him feel
After a few Sundays of this, she didn’t need to draw him out. He came to her, ready to go. They’d flip through books he brought, select figures he’d redraw. She’d have him take artistic ownership, pressing him to render the figures on wild backdrops with an array of materials—charcoal, watercolors, oils—in colors he would select to accentuate mood and emotion. In other words, art. After years of working alone in the basement—compulsively perfecting his technique—Owen found a coach.
Owen shakes off the snow, hangs his coat, and settles into his desk, and starts drawing. It’s like he’s hungry for it. My phone rings; it’s a story source I’ve been chasing pulling me outside for a few minutes. When I duck back in to say I’ll be back in ninety minutes, Maureen has some of Owen’s latest works in her arms to show me. I start to look, and then something surprises me. It’s not one of the canvases, startling as they are. Owen, engrossed a few feet away in his sketch of King Triton, is talking calmly, assuredly, to a girl at a nearby desk. She’s a pretty, blond girl.
This doesn’t happen. When an attractive girl addresses him, or just walks by, he literally has to turn his head. This has been going on for a few years. We’ve talked to Lance and Dan Griffin about it. Their explanations are fuzzy, a grab bag. Sex is a complex transaction along the autism spectrum. For typical teenage boys, when an attractive girl walks by, they get flushed, their heartbeat ticks up. For autistic teens, this is often too jarring, too eruptive and jangling to their nervous systems. They turn away or tamp down the reaction.
Others move along the steps of sexual awakening very slowly, with measured steps, and may not have a first sexual experience until they’re thirty. It’s hard to know where Owen fits, a mystery. But, in this warm and safe place, it seems the art is acting as a thermostat, directing certain senses in one direction—toward the emotive expressions on the page—and freeing them in another. His head down, he tells her he’s drawing Triton, the father of Ariel—the beautiful heroine, whom the girl says she was raised on, just like he was. And then he asks her what she’s drawing.
Now, across the room, another girl joins in—another attractive, artsy girl, in a flowing, peasant blouse—and he tells her his feelings about Ariel, about her motivations and fears, never lifting his head, his eyes finding the line for his pencil.
Maureen, beside me holding up one of his canvases, sees my attention has been drawn away, listening to the exchanges; to the way, in her lair, Owen is learning to manage his unruly senses, to harness them. She watches me watching it all, which I notice as I turn back.
“They like him,” she says.
“I think he likes being liked.”
She nods. “I think he likes being an artist. It’s who he is. That’s what the girls see.”
Owen will have to do it on his own.
When neuroscientists talk of their fascination with autism, they’re referring to how alterations in the way the autistic brain works—what’s different about it—gives them insights into what it varies from: namely, the typical brain. There’s a subtext to that interest. In the past ten years, understanding about the brain’s famous functional map—frontal lobe for this, left hemisphere for that—has given way to a view that the brain is much more dynamic, adaptable, and inscrutable than we’d ever imagined, with various regions and billions of cells instantaneously connecting and carving “neural” pathways.
The humility this is inducing among some very smart people notwithstanding, there’s palpable excitement about one area of powerful and growing consensus: when challenged, the brain finds a way.
In the early days, when Cornelia talked of re-birthing Owen every day, she—like countless other parents, trying anything that they could to reach their child—was experimenting with the brain’s ability to improvise, what would later be called its “neuroplasticity.”
Science caught up with the moms, which is actually not all that uncommon, and now has its hottest lights on autism. Because autism is pervasive, it covers almost all of the brain, putting everything on display. There is clearly a connection between the way deficits in processing language may be caused by, or create, heightened capacities for pattern recognition and certain types of memory. Those three core functions—language processing, pattern recognition, and memory—can be difficult to probe and assess in the typical brain.
But you can see the neuronal gears turn in the way those functions are heightened or diminished by autism, and the way the brain—challenged in this way—is busy discovering itself. Watching that teaches scientists what the brain is inherently capable of. Call it the discovery principle.
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 uninte
resting? 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 remember 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’ emotionally expressive faces—these, in and of themselves, provided much of the full meaning of each of these issues. These cartoons were on the bulletin 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 pla
ce—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.