In a Different Key

by John Donvan

  Schopler’s eminence in the field increased to the point where he took over as editor of the Journal of Autism and Childhood Schizophrenia in 1974, the year Leo Kanner stepped down. He held that post for the next twenty-four years. At UNC, among the parents, he continued to be loved, held up as the model of what an autism professional should be. Among his colleagues, his opinion carried enormous weight. His conviction that the children were educable, and that parents were part of that process, became conventional wisdom, across the field. Thus, it was hardly surprising when, in Los Angeles, Lovaas also started using parents as therapists.

  The two men did not, as it turned out, ever agree on much else. Schopler in the mid-1980s, was known and liked everywhere. Lovaas, however, had a talent for making enemies, and was not so well-known. But that changed dramatically for Lovaas in 1987, when he published an article updating the autism world on what he had been up to.

  The results were stunning, and they made him famous. They also made him a new, and lifelong, enemy: Eric Schopler.

  22

  47 PERCENT

  On March 10, 1987, Ivar Lovaas made national news for the first time since his appearance in LIFE more than two decades earlier. That morning, the front page of the New York Times science section ran a piece entitled “Researcher Reports Progress Against Autism.” The headline was small, but the news was huge.

  Lovaas, according to the Times, had figured out a way “to transform a large proportion of autistic children into apparently normal children”—with a success rate of 47 percent. Lovaas described what the kids were like after he worked with them to Times reporter Daniel Goleman: “If you met them now that they are teenagers, you would never know there was anything wrong with them.”

  The 1987 study stands as a landmark. It covered work that began at UCLA in 1970, when Lovaas had launched what he called the “Young Autism Project.” It was a program delivering Lovaas-style ABA to children at radically young ages, in extremely high doses. Lovaas had taken nineteen children between two and three years old and exposed them to at least forty hours per week of the kind of chair-bound, knee-to-knee-with-an-adult therapy that was one of the hallmarks of his approach. The kids were put through hundreds of different exercises tens of thousands of times. Rewards, a cookie or a cracker, came when they performed as commanded: Raise arms! Touch cup! Give doll! Take book!

  Unwanted behavior, when it didn’t yield to the persuasion of one of those rewards, brought punishment. Hitting oneself, for example, or letting one’s gaze lock onto the spinning fan in the corner of the room, could provoke a loud, sharp No! Other times, Lovaas told the Times genially, “We give the kids an occasional smack on the butt if they get too far out of hand.”

  Lovaas was winding down his use of punishment in these years—there were no electric shocks, no slaps in the face. Still, it was a relentless regimen, during which, according to Lovaas’s own report on the research, the process persisted through “almost all the subjects’ waking hours, 365 days a year.” Two full years of each child’s life were devoted to this; some went even longer.

  For nine of them—47 percent of the group of nineteen—it was well worth it, according to Lovaas. All nine achieved “normal functioning,” by a variety of measures, including a battery of tests of their social skills and intellectual levels. Indeed, their IQs spiked upward, by as much as 25 to 30 points in some cases. All had been accepted at and survived regular first-grade classes, rather than special-education classes.

  Lovaas reported that one of the children had achieved a new IQ of 130 and now, as a teenager, aspired to a career in meteorology. This young man, and the other kids who succeeded, did so by learning how to learn, according to Lovaas. ABA had forced them to pay attention, to imitate, to engage.

  Lovaas avoided the term “cured,” which would have implied he had repaired whatever might be autism’s underlying organic cause. Instead, he said that the kids were “recovered,” meaning that their autistic behaviors had been eliminated. For all practical purposes, it sounded like nearly the same thing as a cure, which was the very outcome he had warned parents not even to hope for six years earlier when he came out with The ME Book.

  The key, Lovaas hypothesized, had been the intensity of the treatment in the Young Autism Project—its long duration and the high number of hours of therapy per week. To be sure, the ten children who did not achieve “normal functioning” had been exposed to the same intensity, but without “recovery.” Yet they had made progress nevertheless, certainly more than a control group of children who had been given only ten hours per week of ABA.

  The bottom line did not need much spelling out: ABA worked, the more of it the better, and a whole lot of it held out a nearly 50/50 possibility of achieving the previously impossible.

  —

  BERNARD RIMLAND COULD barely get off the phone the day the Times story broke. Parents were calling from all over the country. A second wave hit when CBS News reported the findings. Everyone was asking him the same two questions: “Is it true?” and “Should we get our child to UCLA?”

  Rimland was just then launching a quarterly newsletter, The Autism Research Review International (ARRI), to track relevant research from around the world. Rimland reported the 47 percent breakthrough on page 2 without commentary. On page 3, however, he published an editorial that offered his own verdict. “The Lovaas study,” he declared, “is credible.”

  But as Rimland knew, Lovaas and his claim were already under attack. Skeptics were speaking up all over the autism world, and the criticism was aggressive. “One prominent professional,” Rimland reported, “went so far as to call Lovaas another Bruno Bettelheim.” This, of course, was the ultimate slur, “implying that what Lovaas had done is destructive to autistic children and their families.”

  Rimland did not identify the expert in question, but it was not hard to guess. Eric Schopler had never much liked Ivar Lovaas. Now it was war.

  —

  SCHOPLER AND LOVAAS had first bumped into each other years earlier, at a small autism symposium held at the University of Indiana. That year, 1968, autism was still a research backwater. The twenty-six people in attendance, including three from Britain, comprised almost everybody working in the field. The TEACCH program did not yet exist, and Lovaas was still using electric shock therapy.

  Schopler gave a presentation that harkened back to his dissertation work on sensory patterns. Lovaas updated the group on what he was doing with applied behavior analysis. After Lovaas concluded his points, he said something that Schopler took as a swipe at his presentation. “Why do we have to talk about these children as having neurological problems?” he recalled Lovaas as saying. Lovaas then argued that any normal child locked up in a bare room, with no one to talk to, would soon be exhibiting self-stimulating behaviors—just like any child with autism. “Even my own son,” Lovaas supposedly went on to say. “So let’s not talk about autistics, but just about autistic behavior.”

  To Schopler, this was preposterous, to posit no meaningful difference between a normal boy deprived of his toys for a while and children like those he was now treating in North Carolina, who were disabled for life. His opinion of Lovaas plummeted.

  Over the years, at other conferences, Schopler hardened his disapproving view of Lovaas’s character, watching him give talks and then skip out when other people got their time onstage. He often observed that Lovaas showed up “with a different woman at each conference” and spent no time with the parents. “He would just stay for his presentation and leave.”

  In the second issue of his ARRI newsletter, Rimland published a letter in which Schopler expressed that he was “dismayed to read [Rimland’s] uncritical reporting” of the new Lovaas claim. He charged Rimland with repeating the same mistake the news media were making with their “exaggerated and misleading…coverage” of Lovaas’s assertion of “recovery.”

  In the letter, Schopler claimed that Lovaas’s study should not be trusted and laid out a catalog of problems with
it. The measurements Lovaas used to gauge the children’s progress were invalid. His control groups were not soundly constructed. Most critically, the group that included all those supposedly “recovered” kids was packed with “high-functioning” children to start with.

  In no other arena did the phrase “high-functioning” constitute fighting words. But every autism expert knew what Schopler was implying: that Lovaas had stacked the deck to produce the results he wanted. First, such kids were already closer to “normal” to begin with. Second, it was accepted that high-functioning kids with autism, especially kids with language, nearly always made better net progress than those who were lower functioning and unspeaking. According to Schopler, Lovaas’s kids were anything but a random sample, representative of the full range of autism.

  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

  On 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, Taylo
r 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.

  —

  BRIDGET TAYLOR 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.