Life, Animated (2 page)

Back in his chair, he says, “I’m afraid that Owen has what we’re nowadays calling pervasive developmental disorder, or PDD, with the addition of NOS, for ‘not otherwise specified.’” That means Owen has some “autistic-like behaviors” but also others—like that “let’s play” look—that don’t fit the current definitions of classic autism.

He goes through a regimen for Owen that he feels we should start immediately. Intensive speech and language therapy, occupational therapy, play therapy, and the immediate hunt for an appropriate school for the coming fall, for which he has some suggestions. “Early intervention,” he says, “is crucial.” He adds, “Families who have religion or some faith community in their lives tend to do a bit better,” which chills us both—that catastrophe awaits—but is something Cornelia, raised Catholic, will soon draw strength from.

That Owen was not labeled “autistic” is a relief, as is Rosenblatt’s characterization of Owen’s problems as a “delay.” We’ll learn more later about the connotative cover these terms offer us. The important effect: it keeps us from running out of the office and driving home feeling like we’ve both just had our arms and legs cut off.

We make small talk with Rosenblatt walking toward the parking lot that day in April and get a bonus in building our defenses. We mention our wonderful pediatrician in Boston, a Harvard doctor named Bob Michaels. Rosenblatt does a double take. From Pittsburgh? Yes, we say excitedly—raised in Pittsburgh. “Do I know Bob Michaels? His father was my pediatrician. A great one. He was a major reason I became a pediatrician!”

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.

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.