In a Different Key: The Story of Autism (37 page)

Rimland gave Lovaas space to respond. “We believe that Dr. Schopler is mistaken in his analysis of the study,” Lovaas wrote. Then he refuted everything Schopler had said was wrong with his paper, point by point. He dwelled especially on the suggestion that he had cherry-picked high-functioning kids to tilt the outcome. Rather, he said, children were chosen for his study depending on whether he had therapists free to work with them at the point where they entered his program.

The battle between the two men, instead of dying down, would only ramp up from here. Over the next seven to eight years, their feud went through round after round of attack and counterattack, with personal smears, threats of lawsuits, and attempts to build alliances with other researchers against one another. Just as remarkable was both men’s preferred setting for their sniping: the pages of various academic journals. These publications had lead times of several months, which was one reason the battle dragged on for so long. It could take half a year to take a punch, and then just as long to jab back again.

Lovaas’s side was sometimes represented by people who appeared to be proxies, handling the attack on Schopler on his behalf. Schopler, for his part, made a concerted but unsuccessful effort to forge a coalition of well-known autism figures who would condemn Lovaas openly. Lovaas, on his side, dug deep into Schopler’s early writing, looking for dirt. He unearthed an early Schopler paper reporting his one-on-one work with a five-year-old girl, lifting quotes from it in a way that unfairly hinted at an improper sexual relationship. Schopler was happy to frequently remind people that Lovaas had used a cattle prod on five-year-olds.

None of this was doing much to serve science. Unquestionably, Schopler was the main instigator, keeping the feud alive when Lovaas seemed willing to let it die. His personal disapproval of Lovaas and their professional competition for both the affection of the parents and the scientific limelight drove a good deal of the feud. But associates of Schopler’s also thought his fundamental grievance was a sincere belief that Lovaas had played fast and loose with the scientific truth and that people would get hurt as a result.

A book chapter in which Schopler and his deputy, Gary Mesibov, chastised researchers who “foster unrealistic expectations and promises for
improvement,” was so clearly aimed at Lovaas that, once again, Lovaas
threatened a libel suit. Lovaas also tried to turn the “unrealistic expectation” argument back on Schopler, bemoaning “the consensus of researchers that little can be done to help autistic children.”

In fact, however, it was not just Schopler who questioned Lovaas’s results. UCLA psychiatrist Edward Ritvo, another respected authority on autism, was heard complaining that a “lot of that stuff comes out under the label of UCLA is unfortunately disseminated
widely and untrue.” Michael Rutter, the UK’s first professor of child psychiatry, as unimpeachable a voice as there was in autism, also expressed doubts about “claims of a cure [that] run counter to both clinical experience and what might be expected on a basis
from prevailing theories.” For Lovaas, too, a main problem was that no one else, anywhere, was going to be able to replicate his results quickly—if at all.

Lovaas’s love of the limelight was catching up to him. He had never used the word “cure,” nor would he; that term had no relevance in the ABA universe. But the media kept the talk of “cure” alive, their preferred translation for “recovered”—a word that Lovaas did use. As critics piled on, Lovaas stopped using even that term, substituting a more precise but less dramatic formulation: the kids had achieved “normal levels of intellectual
and educational functioning.”

To an ordinary person, that represented a big difference. The word “recovery” painted an image of previously silent and isolated kids becoming ordinary, trading baseball cards, and horsing around on the playground. “Normal levels” instead only suggested kids getting better at doing math and standing in line to pick up their own lunch. In truth, such achievements would be life-changing for any child previously incapable of them, but they were not the same thing as not having autism anymore.

When Lovaas published a follow-up study on the same group of kids in 1993 with colleagues John McEachin and Tristram Smith, he was a great deal more cautious in the tone he took. This time, there was no boasting to the
New York Times
. Yet his results were as impressive as
the first time around—better, even. All but one of the children he had called “normal” in 1987 had held on to their gains in intellectual and educational functioning, and they continued to do better intellectually and socially than the nineteen kids in his original control group. Even Eric Schopler’s trusted deputy Gary Mesibov tipped his hat upon hearing the update, conceding that Lovaas had confirmed “that behavioral interventions are effective in the long run.”

But Mesibov also raised the perennial question:
Compared to what?
Lovaas’s inability to answer that question mattered. ABA already faced serious obstacles to its acceptance. Its use of punishment remained controversial, as did the money it cost and the time it demanded. The reality was that Lovaas’s method was still purely experimental. In terms of clinical trials, the intense effort represented by the Young Autism Project was something one scientist had tried one time in one lab. That was not good enough for science, which always demands that experimental results be replicable. Some other researcher—at best several of them at several sites—had to run the Lovaas experiment all over again to see if they came up with similar results.

Even one of Lovaas’s most ardent supporters, fellow behaviorist Richard Foxx, chided Lovaas about this, writing that unless he successfully replicated his findings, Lovaas would be denied the full-throated standing ovation that was quite possibly his due. Foxx urged Lovaas and his partners to do everything possible to facilitate an independent research group to run his experiment again. Absent such replication, Foxx predicted, Lovaas’s work would remain stuck in
“a kind of scientific limbo.”

Without question, Schopler’s attack on the Lovaas ABA “story” succeeded for a time in raising doubts, lowering the excitement that Lovaas had aroused, and drawing parents’ attention away from what he dismissed as another “mindless fad.” To be sure, Lovaas still had disciples, parents and graduate students, mostly concentrated around Los Angeles, but acceptance of the Lovaas Model did not suddenly take off after his landmark study of 1987.

TEACCH, on the other hand, did. Even a close Lovaas collaborator acknowledged this. In a review of what methodologies were in
use in the autism universe in the 1990s, Tristram Smith wrote that Schopler’s program, “
implemented throughout the United States and Europe, has been the most influential special education program for children with autism.”

Richard Foxx was right. As the 1990s began, Lovaas’s answer to autism, his version of ABA, was in limbo. Then a mother named Catherine Maurice wrote a book called
Let Me Hear Your Voice
.

23

LOOK AT ME

O
n a midwinter afternoon in 1988, while taking the elevator down to the first floor in Whittier Hall at Columbia University, a master’s degree candidate named Bridget Taylor overheard two other students mentioning a name she recognized.
“It’s hanging in the job placement office,” one of them was saying. “They’re looking for somebody Lovaas-trained.” When the elevator doors opened, Taylor took the turn toward Room 120, where Columbia’s Teachers College posted employment opportunities for current students. She found the notice quickly, tacked up on a bulletin board: “Seeking a practitioner of Lovaas-based intervention.” She kept reading. The work would be with a child in Manhattan, and the family was ready to pay $60 per hour. That was
six
times what she had been getting working with kids with autism the past few years. Taylor ripped the notice off the board, pocketed it, and went looking for a phone booth.

—

B
RIDGET
T
AYLOR GREW
up with disability in her own family. Her brother John, younger by two years, was born in 1966 and diagnosed with Down syndrome. When his parents brought him home—resisting the pressure to have him institutionalized—he was the fourth child in the household. He and Bridget, now the second youngest, shared a bedroom and quickly became inseparable.

Only two when John joined the family, Taylor did not see her baby brother as different. In a fundamental way, that never really changed, even as they grew older together. She adapted readily to the duty that
falls to every older sibling to “show the ropes” to a younger kid—the essentials like how to climb a tree, or keep out of sight in hide-and-seek. It became second nature for Bridget to slow down when John had trouble following, or to figure out some other way to spell things out for him. In this manner, unimpressed with her brother’s diagnosis of Down syndrome, she actually taught him to read when he was five and she was seven.

That is not to say they never had their battles. John, as he grew older, became obsessive about certain things, like music. He would lie on the floor beside the radio, listening for hours. He also had a habit, once Taylor moved into a bedroom of her own, of standing outside her door and echoing one word over and over again relentlessly. She couldn’t stand this, but screaming at him—her first response—only seemed to encourage the behavior. One day, though, in a stroke of early behaviorist instinct—or just sisterly pique—she pulled the knob off the radio he loved listening to. She refused to put it back until the echoing stopped. She had figured it out: rather than reward him with her attention, she would keep quiet and use an aversive experience to shut him up. Gradually, John seemed to forget about how much he had once enjoyed repeating himself, and the behavior stopped for good.

In the fourth grade, she already knew that she wanted to be “a psychologist that helps families,” as she wrote in a school essay, though she wasn’t entirely sure what psychology entailed beyond that. As a teenager, when her friends were taking summer jobs in restaurants and clothing stores, she always looked for opportunities to work with kids, especially those with challenges like learning problems. Her high school offered her the chance to take advanced placement courses in psychology, and she paid for college by working two related jobs—at a preschool for mentally challenged children and as a substitute support aide taking shifts in group homes.

In 1983, as a nineteen-year-old psychology major, she was recruited for a new program starting up in Ridgewood, New Jersey, a short ride over the George Washington Bridge from Manhattan. It was an autism program—Appropriate Living for the Autistic—that was designed to give parents an occasional two- or three-hour “respite” from their kids, while the children were placed with a trustworthy person capable of
handling them. This would mark the first time Bridget would encounter the condition.

Before starting, she and a group of other young hires were given a day of training, led by a young PhD candidate at Rutgers University named Carolyn Bruey—later the author of several books on autism—who showed up for the session with
The ME Book
under her arm. Over the next several hours, Bruey walked the group through the concepts of shaping, reinforcement, prompting, and extinction, giving examples of how to break complex skills into small component parts. They were taught that rewards for correct performance had to be delivered within a split second to have any impact. They also practiced honing the language they would use during sessions with the kids, to an unnatural-sounding bare minimum. “Please hand me that ball,” for example, would be pared back to “Give ball.”

It was a lot to take in for one day, but to Taylor, it was energizing. She had not realized there was such a specific and well-researched set of tools to use with children with autism, whom she had heard were extremely difficult to reach. She got her own copy of
The ME Book
and wore out its pages learning its contents.

The first child she encountered in the program was a three-year-old named Jeffrey, who was unspeaking, uncooperative, and easily upset. He hated the feeling of clothing on his skin and would strip himself bare whenever given the chance, no matter where he was, regardless of the weather.

Jeffrey had been attending the Douglass Developmental Disabilities Center at Rutgers for some time. But now, after school, Taylor extended his day with outings to the park, where, with no one looking over her shoulder, she began trying out some of what she had learned from Bruey and
The ME Book
. That first day, she broke up a cookie into small pieces and, using the techniques she had just learned, taught Jeffrey to sit when asked. Taylor knew this was something he had never done before, so she was both astonished and delighted to discover that he liked cookies and was, apparently, willing to sit when told in order to get a piece of one.

From there, she got Jeffrey to sit on a swing—also something brand-new—and then to use his legs to get himself moving, and, finally, to
experience the full first-time pleasure of riding up to the sky all by himself. Soon she had him working puzzles and playing simple games. When she led him home after every session out together, she would throw him onto his bed over and over, which he loved. All this, they accomplished without the use of any punishment whatsoever.

Jeffrey’s mother’s reaction was similar to Taylor’s, with gratitude layered on top of delight and astonishment. It was the first time she could recall seeing a “professional”—someone from outside the family—pay real attention to her son. Soon other parents in the program were booking Taylor for private sessions with their children outside of the established program hours.

Then she was fired.

It seems her popularity had led to some organizational strife, beginning when the agency was besieged by parents demanding that “this Bridget girl” be reassigned to their child. Taylor was called in and ordered to drop the private work, or else. She refused. And then she was out. In her view, she quit.