In a Different Key: The Story of Autism (36 page)

Knowing nothing about how politics worked, the two men, in their naïveté, wrote a bill that asked for everything they could possibly think of. They conceived of a broad, school-based, statewide program that would extend the services available in Trailer 18 to children and their families all across North Carolina. It would be run out of three large regional centers, which would be located in regular public schools. It would deliver a curriculum of structured activities in structured spaces but with a student-teacher ratio of nearly one-to-one. And it would allow for tailoring of the program to the strengths of each child—who would, henceforth, be considered a student, not a patient. Parents and home instruction would of course remain vital to the program. They even came up with a catchy acronym: TEACCH. It would stand for “Treatment and Education of Autistic and Related Communication Handicapped Children.”

Larkins, after reading the nonlawyers’ draft, was still in. The bill’s language was burnished to make it more legislatively appropriate, and the parents started to organize a lobbying campaign. Bobo Warren raised funds, while Betty Camp and David’s mother, Mardy, rallied fellow parents to unleash a flood of mail on the state legislature. They came up with talking points, which they circulated via a newsletter
conceived by Bobo and put together by her husband, Frank, a newspaper reporter. Parents were urged to ask all their friends, and their friends’ friends, to contact their representatives.

Schopler and Reichler, meanwhile, learned that North Carolina’s commissioner of mental health was furious that two upstarts from UNC were writing legislation and encroaching on his territory. They were summoned to a meeting with him, where he warned them to back off. Rattled, the pair headed over to see Larkins, who immediately placed a call to the commissioner to talk him out of trying to sabotage the bill.

Passage of the bill was far from certain. Then Betty Camp and some other mothers came up with the idea of cooking breakfast for the entire membership of the legislature—bacon, ham, eggs, grits, coffee, and juice—in order to lure as many lawmakers as possible to a talk by Schopler and Reichler. They secured a church basement near the statehouse. The politicians were told that a lot of reporters would be present; the reporters were told that a lot of lawmakers would be present.

On the morning of the breakfast, the basement was filled with parents, their kids, lawmakers, and press. As each elected official entered the basement, he or she was guided to one of the seats next to one or another of the kids. A half dozen tables filled up with legislators, parents, and a bunch of boys and girls with autism.

Reichler led off the presentation, pointing out that the TEACCH idea was viewed favorably by the biggest name in autism—Dr. Leo Kanner of Johns Hopkins. He spoke a little about the condition, and about education. Mostly, he laid out an economic argument, pointing out that helping kids become more independent now could make them less dependent on the state later in life.

Suddenly, in mid-sentence, Reichler stopped speaking and stared, mouth agape, at the table where Bobo Warren’s son George was sitting. At that very moment, George had just attempted to feed grits to the second-highest-ranking elected official in the state. Lt. Gov. Hoyt Taylor Jr. had arrived a little late to the breakfast and slipped quietly into the empty seat next to George. While his attention was focused up front, George had hit him just below the chin with a spoonful of
grits. Bobo rushed to pull George back and started apologizing. Taylor smiled, insisting he was fine. He motioned for Reichler to carry on. When Reichler resumed, Taylor smoothly, unobtrusively, unknotted his tie and slipped it into his pocket.

It turned out to be a good omen. When Mary Lou bumped into her friend Senator Larkins the next day, he excitedly told her that the lieutenant governor had received the message: these kids and their families needed help. Taylor had promised Larkins
“not to rest until something was done.”

—

T
HE BILL AUTHORIZING
and funding the program known as TEACCH was passed by the North Carolina state legislature on Wednesday, January 13, 1971. Signed into law by the governor, the act immediately turned North Carolina into an oasis of compassion, offering generous support services for families dealing with autism, in stark contrast to the rest of the United States. Over the next several years, the program expanded steadily. The number of classrooms would rise from ten at the start to approximately three hundred. UNC began offering TEACCH-centered internships and postdoctoral programs, and the program hosted visitors from all over the United States and around the world. As changes in legislation increasingly began to require US school districts to offer programs appropriate for children with autism, the TEACCH curriculum was among the most often adopted. TEACCH-based programs also became prominent in the UK, Israel, Singapore, and elsewhere around the world.

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

O
n 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.

—

B
ERNARD
R
IMLAND 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.

—

S
CHOPLER AND
L
OVAAS
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.