by Ron Suskind
As soon as we get home, we call Dr. Michaels at Harvard to tell him of this extraordinary coincidence and—not incidentally—elucidate what we’ve been seeing with Owen since leaving Massachusetts. He puts us on hold and gets Owen’s charts. He scans them but hardly needs to. “I just examined him in the summer. He was completely fine. I don’t see how this could be.”
Neither do we. Yes, something went haywire, but something that is confusing even to the doctors. He is “atypical”—Rosenblatt’s word—and his problems are assorted delays. They can be corrected. We sleep that night in a wash of relief. We will save this boy, rebuild him—rebirth him!—every waking hour of every day. Fools.
The next morning, Cornelia takes Owen by the hand and walks Walt the seven blocks to Hyde Elementary, down the street from our house in Georgetown. Walt is thriving there. Other than a slight disciplinary issue—for playing the harmonica to announce his presence at a morning meeting on the first day—he’s enjoying school, making friends; playing, learning, growing. That day, after dropoffs, Cornelia, Owen in tow, meets with a small group of parents. Hyde isn’t quite measuring up to some of the elementary schools in other Northwest DC neighborhoods, but it’s aspiring to—an effort discussed in that morning’s coffee klatch about the upcoming Hyde Spring Fair. It can, and should, raise plenty of money for the school, and Cornelia—as the fair’s co-chair—has been busy lining up sponsors, donated goods, and the like.
All of which makes the day—a Saturday in early May, two weeks hence—a big one for a new family in a new community. The large fenced-in playground alongside the school is starting to fill up by late morning as the ride managers hustle to get the moon bounce pumped. It feels like what we hoped to find in DC—what anyone would want, really—the company of happy warriors, building a little bordered world of fun and food, where equal, matching armies of parents and children gather and cheer for a good cause.
We’ve taken great care, of course, in planning the day for Owen so he can attend with us. There’s only one gate to the playground, managed by parent volunteers who know him and are on guard against him slipping out; and that isn’t even an issue, considering that either Cornelia or I will be with him every minute. And we are, over hours, as the frenzy of running a fair like this ebbs and flows: more ice; does anyone know where the power switch is; are we out of hot dogs!
It’s hard to pinpoint the exact moment. Generally, Father Error is to blame. Mothers probably have hard-wired neurological equipment, dating back to roughly the Big Bang, for instantly knowing the coordinates of offspring. It’s well along into the afternoon when I let go of his hand to shove the remainder of a hot dog—Owen’s lunch was the other half—into my mouth and then grab a Coke can I’d rested on the ground. When I turn, the patch of swing-set gravel a foot to my left, where he just stood, is empty.
Fathers have equipment in these situations, too. But the circuits fire differently. First rule: don’t panic. Scan the perimeter, steady and swift: 90 degrees, 180, 270, 360.
Then panic. I start to run, first a slow trot, toward the gate and ask one of the dads at the gate: “Did you see him—did Owen slip by?” It’s astonishing how much attention a running man can draw. I turn to see a small crowd of parents already behind me…led by Cornelia.
I don’t have to say he’s gone; that, she can see, so I jump to pertinent facts. “I was with him at the swing set thirty seconds ago. He didn’t get out of the gate!”
It helps that the fair is winding down—there are fewer people to block our lines of sight. After five minutes, he’s still nowhere to be found. Cornelia and I, running and panting, are tamping down the same, shared memory: a year before at a school fair in Wellesley, near our home in Massachusetts, he was briefly lost. We filed it away: two-year-olds get lost. It happens. Actually, it doesn’t happen all that often. They tend to have at least a remnant of separation anxiety—a match of the mother’s radar—and a dawning awareness that no parent is nearby. That’s the moment they realize they’re lost and start crying. Whether or not Owen once had that equipment, it is now shut off…and this isn’t verdant Wellesley. It’s a patch of fenced concrete in Georgetown, with cars weaving down cobblestoned O Street and, half a block away, speeding down Wisconsin Avenue—one of Washington’s main thoroughfares.
At ten minutes, panic spreads. Parents start fanning out into the streets. Cornelia and I run into the school—off limits for the fair, but a door, through which some of the power cords run, is open. It’s a turn-of-the-century brick box, huge and empty, with crumbling cornices and two hallways we run down—I, down one hall; she, the other. There’s honking outside—sounds like a wreck on Wisconsin. My heart stops beating—Please, God, let that not be him. Cornelia is now moving like a spirit—silent and swift, breathless—her feet skimming the ground. Not really in her body. She’s in his head, looking around and then out through his eyes, the two of them meeting in there, talking softly: “Where would you go, honey…where would you want to go?” Most classrooms are locked. A door is ajar.
And there, next to a wide window, partially open onto the playground where everyone had been shouting “Owen, Owen!” he’s standing, quietly, next to a sand table. Outside, parents move in fearful unison while Owen intently watches grains of sand run through his fingers.
Seats in the jammed ballroom just north of Washington are already scarce by eight A.M. on a very hot June morning. The air inside the Crowne Plaza Hotel in Rockville, Maryland, is electric, all clipped conversations and eager looks, this way and that.
Cornelia spots a lone seat at a crowded table as Dr. O. Ivar Lovaas—gray-haired and energetic at sixty-seven, with a wide smile, blue eyes, and only the slight trace of a Norwegian accent—takes the stage to raucous applause.
He’s come east from his offices at UCLA and his growing California operation, to encourage the faithful, but also to win converts. He’ll do that by putting on a show. Soon the stage is alive with a kind of psychodrama—therapists working with the Lovaas Model of Applied Behavioral Analysis, or ABA, on autistic children, and Ivar, himself, presiding.
His technique is, at its core, bracing, whereby an ABA-trained therapist sits across from a small child and, with rewards and verbal “aversives”—stern language and sometimes shouts—forces changes in the child’s behavior. It’s pure behavior modification. Lovaas is a disciple of B. F. Skinner and his use of rewards and penalties to condition responses: in this case, how to reduce interfering behaviors, how to build the child’s attention span, how to use succinct instructions, how to use effective consequences for behavior, how to sequence the teaching materials to shape more complex behaviors, and so forth. It looks to the untrained eye like animal training. To build eye contact, for instance, the ABA therapist will put the reward (M&M’s being a favorite) on the bridge of the child’s nose to make them look up toward the therapist’s face. If, after succinct instruction—“Look at me”—eye contact is made, the M&M is popped into the little mouth. Crisp instructions, like “Quiet hands” (autistic kids often flap their hands) or “Mouth quiet” (no self-talking), are backed up with some grabbing and manipulating, moving the child’s hands into their proper place. Lovaas’s selection criteria for an early quartet of autistic kids he worked on in the 1970s included the request that they have a healthy appetite so the withholding of food would have maximal effect.
A master of one-liners, Lovass implores the audience to get children into one of his intensive, forty-hour-a-week programs before they turn four for optimal outcomes.
“Once they reach four, it becomes more difficult—so please don’t wait,” he says before offering inspirational stories of how lives have been turned around through the use of his method.
Lovaas presented startling results in a 1987 research paper regarding nineteen children. His finding—that nine of the severely affected autistic children were “cured” by his technique and went on to successful lives in mainstream settings—has not yet been replicated by early 1994.
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p; But there was no shortage of those willing to try.
We’ve furiously run up a learning curve since meeting with Rosenblatt. There’s a lot more to know than Rain Man, of course, a history going back to the late 1930s, when Leo Kanner, a child psychologist at Johns Hopkins, first tested eleven kids and wrote up his findings: of a particular boy “drawing into a shell and living within himself” and being “oblivious to everything around him.” The kids generally had difficulty with expressive language, treated objects with a care typically reserved for people, threw tantrums when routines were changed, but often had strong yet narrow memory capabilities and, Kanner wrote, “could not be regarded as feebleminded in any ordinary sense.”
Around that time, half a world away, Hans Asperger, an Austrian researcher, was doing original research on four boys whose behavior and capabilities showed “a lack of empathy, little ability to form friendships, one-sided conversations, intense absorption in a special interest, and clumsy movements.” Asperger, who never met Kanner, dubbed these children “little professors,” hyper-verbal at a young age, deeply focused on their particular affinities, but still “autistic” in that they lived lonely, socially isolated lives—much, in fact, like Asperger himself.
In the decades to follow, there were battles over causation, including Kanner and later the celebrated Bruno Bettelheim attributing it, falsely, to so-called “refrigerator mothers”—a theory that finally collapsed when genetic testing in the early 1980s showed a high prevalence of autism in twins and siblings who had been separated at birth.
But the numbers kept growing. By the early 1990s, children with a wide array of profiles, from those who spun, self-stimulated, and never spoke to the hyper-verbal and hyper-focused, were finding a diagnostic home somewhere along the shoreline originally mapped by Kanner—defining what eventually would be called “classic autism”—and Asperger, whose “Asperger’ syndrome” wasn’t even discovered until his lost papers were translated by German child researcher Uta Frith in 1991. Somewhere in the middle was PDD and PDD-NOS, for kids who didn’t fit neatly into either category.
In the latest Diagnostic and Statistical Manual of Mental Disorders, or DSM, published in early 1994, all of them are listed, and a few doctors, including our Dr. Rosenblatt, are already calling it a spectrum of related disorders. Why the numbers seem to be growing is a mystery, as are effective treatments. The two that seem most promising are Lovaas’s behaviorism and a technique developed by a George Washington University professor named Stanley Greenspan called “Floortime,” a system of basically following the kids—driven by their intense self-directed urges—wherever they go, and in whatever they utter, and try, with various methods, to draw them out. Very different therapies—almost polar opposites—that share a one-on-one model of intense engagement and a goal of bringing these kids into the world.
Because Owen is “atypical” in some of his features and, at that point, ABA is more the destination of “classic autism,” presenting at birth or soon thereafter, Rosenblatt suggests we go with Floortime. Owen has already been to a few sessions with one of Greenspan’s longtime adherents, a middle-aged woman who doesn’t seem to have much of a knack for getting on the floor. Mostly, she gets Cornelia on the floor and coaches her about how to follow Owen around to pick up motions she could imitate, sounds she might repeat, or looks—at whatever object might be in his path—that she can mirror. Exhausting, but no discernible progress. Cornelia figures she should at least see what Lovaas had to offer, which is what brings her to the hotel this morning. At the lunch break, she chats with a dozen or so other attendees sitting at her round table, loaded with piles of ABA materials, and realizes they are almost all teachers and therapists from Montgomery County, looking to get certified as ABA trainers. This session is a first step. Once certified, they’ll be ripe for hire as, in essence, a member of a family with a burdened child. The protocol is to spend forty hours a week in someone’s house, to stay on top of the child all day, and then train the parents to carry forward conditioning on evenings and weekends. The key is to totally shape the environment. It is expensive, but desperate families are willing to try anything.
Cornelia listens, quietly, to the excited chatter, not saying much. After a moment, she realizes she’s a rarity in this ballroom: a parent.
She lets on…and their faces flush with sympathy. Tell us about your child, how old? Three. Does he have any speech? No, not really. One asks if the ABA training is difficult to watch. She nods and forces herself to smile. If she’s looking to hire someone, a therapist mentions, she’d be happy to travel each morning to DC. Cornelia doesn’t let on that we’re drifting toward the opposing camp.
It isn’t until late afternoon after picking up Walt from school, putting Owen in his car seat, and racing north from DC to Rockville, Maryland, that I meet up with Cornelia. She’s already waiting outside the hotel and slips silently into our Volvo station wagon—our only car—looking shell-shocked. “It was like spending a whole day, eight hours straight, with the Ice Queen,” which is what we now called that first autism doctor. She describes the day and then offers her summation: “We don’t have to do this monkey training, because Owen isn’t like those kids.”
I nod. We both nod. It’s just a matter of reaching him, of figuring out what caused this storm to envelop him, so we can clear away the clouds and let the light back in. It also costs about forty thousand dollars a year for Lovaas. I figure that’s a lot of cash, well over half of my after-tax income, that we just saved. To celebrate, we decide on dinner out on the Rockville Pike—a repeating Hanna-Barbera landscape of every franchise created by the wit of man. We end up at the Silver Diner, one of a chain of restaurants crafted with admirable precision to look like genuine, home-grown neighborhood diners—a favorite of our kids and their beleaguered parents: a perfect place to vanish, where they serve ice cream sundaes all day.
A Georgetown video store has a life-size cardboard standup of Walt’s new favorite movie, The Sandlot, 20th Century Fox’s recent hit about a group of neighborhood kids who forge friendships as a ragtag baseball team. As September 1994 arrives, our months of pleas and cajoling pay off: the manager, ready to swap it out for another movie studio giveaway, hands it to us. So, for his sixth birthday party at a park near our house, Walt’s buddies crowd around their cardboard Sandlot doppelgangers—Bertram Grover Weeks, Mike “Squints” Palledorous, Benny “the Jet” Rodriguez—with Walt front and center, making for a thin line between the imaginary and the real. We snap pictures—lots of them.
A year before, this fairly conventional scene would’ve barely elicited a shrug. So, he’s got lots of friends, is at ease in the world—of course, and why not…to be expected. That’s the way it was back in Dedham. We didn’t make a fuss over what was expected. Now it fills us with a sense of the exceptional.
And a wash of relief that Walt, smiling away, doesn’t seem to notice that the rest of us are barely keeping our heads above water.
A few days after the birthday party, we put Owen in the car for the forty-five-minute drive to Rockville, Maryland, and the Ivymount School, which, with two hundred students, from kindergarten through high school, is the largest and best school for kids with disabilities in the area. When the school was started in a church basement in 1961, there was no place for children with serious disabilities like Down syndrome or those with most developmental disabilities to go. Before Eunice Kennedy Shriver started Special Olympics in 1968, and public awareness began to grow, most were either kept at home or institutionalized.
It is a long way from there to this large Eisenhower-era school building, once a public elementary school, with its painted cinder blocks, blond wood, a library, gymnasium, and student artwork taped to the walls of long hallways. There are two children waiting in Owen’s classroom—a Down syndrome boy named Eric and another boy, Julian, very much like Owen, with a PDD-NOS diagnosis and no speech. Owen makes three. The teacher, Lucy Cohen, explains that the school recently had more kids, but in the
past year many decamped to receive Lovaas-style ABA training at home. It will just be the trio, with Lucy, a speech therapist, and an aide. We’re asked to sit on floor mats against the wall to observe. And we do, as Lucy attempts to get the children to do simple tasks. Owen and Julian spin, murmur to themselves, and look about as Eric draws a figure on a page, per the teachers’ instruction.
Sitting on a mat, my back to the wall, I find myself thinking, in a kind of rueful amazement, how many wild-eyed expectations you carry around about your kids, especially when they’re young. Presidents? Nobel Prize winners? Global celebrities? Super Bowl quarterbacks and prima ballerinas? It could happen. Or, more soberly, millionaire philanthropists or, at the very least, graduates of the finest colleges, Harvard or Yale, then graduate school stars, most-recognized professionals in their field. More likely, certainly than the Nobels…and, thereby, certainly likely. Their enrollment in school—where they meet other children and start slotting into lines, receive test scores, make teams or get cut—starts the process of wrestling those unspoken fantasies toward abiding reality. And even then, those fanciful notions are surprisingly resilient. After all, as long as that kid’s on the field of play, in the tournament’s main draw, it could happen.
How many of these breathless expectations—also called dreams—constitute the traditional allotment? Best way to figure that is to extract them, one by one, and smash them in the corner. The pile is quite high. And that’s what we do, minute by minute, sitting on the floor mats, backs pressed against the cinder blocks. Owen spins and murmurs next to the sweet blond boy. We haven’t seen other kids like Owen before. Here is one who could be his twin. But Eric? Someone my age, growing up, knew those Down syndrome kids—spotted, peering from the window of the “short bus.” No, they weren’t in the game. Damaged goods. Ripe to be mercilessly ridiculed. Why? They wouldn’t even know they were the butt of the joke. It was a free kick. That was the reality of it—just as ugly as it gets.