In a Different Key: The Story of Autism (34 page)

Foxx seemed particularly peeved by Anne Donnellan. He questioned her claims to have successfully treated “severe” problem behaviors using nothing but positive reinforcements. When he got his hands on a book she coauthored—
Progress Without Punishment: Effective Approaches for Learners with Behavior Problems
, which had become something of a manifesto for the antiaversive cause—he charged that the majority of the cases she reported on there and elsewhere were actually examples of minor behavior problems: among them spitting,
sticking out a tongue, hitting a teacher once or twice a week, and telling too many knock-knock jokes. Beyond that, many of Donnellan’s cases were small children. Foxx implied that Donnellan may never even have laid eyes on a person with truly severe behaviors—such as a strong and difficult-to-handle adult, relentlessly battering himself, or others—people who, back in the 1970s, would likely have been in restraints and in an institution. In such settings, Foxx sniffed, antiaversive activists
“would not deign to provide treatment.”

—

I
N FACT, THE
program in
The ME Book
did rely overwhelmingly on positive reinforcement, rewarding appropriate behavior with toys, ice cream, and hugs. But behaviorism was viewed with such suspicion in some quarters that it was difficult for the Lovaas Method to gain traction. As one child psychiatrist told a curious mother, who asked his opinion of Lovaas-style operant conditioning for her son: “If you want to turn your child into a terrified trained seal, go ahead.”

Cost was another obstacle to the wide adoption of the program. Keeping as many as eight college students on the payroll was an enormously expensive undertaking for the typical American family. In the 1980s, the price of a full-fledged home-based ABA program could be as much as $50,000 a year—more than half the median price of an American home in that period. The time commitment too seemed overwhelming.

And with all that, Lovaas was not promising that his method would cure autism. He discouraged “hoping and struggling for often unattainable and absolute ideal [s] of normalcy or overall excellence.” Because his method would take each child only so far, Lovaas offered this piece of advice to the parents:
“Often the happiest people are those that curb their ambitions a bit.”

Still, in the 1980s, there were parents, mostly in the Los Angeles area, who took out a second mortgage in order to turn their homes into ABA schools, each serving one child—the parents’ own. They brought in teams of college students and followed
The ME Book
religiously, consulting with staff at UCLA to make sure they were on the right track. But other than a few centers in New Jersey and Indiana,
Lovaas’s work had still not traveled much beyond L.A. It did not help that there was little framework for exporting training in the proper use of his method. Aspiring therapists needed to get into the UCLA program to get exposure to it.

Neither was Lovaas well known yet outside of ABA circles. It had been twenty years since he made a splash in
LIFE
magazine, and public memory was short. The academic journals in which he published had a minute number of readers, sometimes in the low hundreds, though most were well informed. He was not a top name in autism education nationally, not even close. That position happened to belong, instead, to a psychologist and professor in North Carolina by the name of Eric Schopler, who had been researching autism almost as long as Lovaas. Already hailed as a giant in the field of autism, he would soon find himself unable to ignore Lovaas, and vice versa, as the two men launched a years-long feud—watched by everyone else in autism—over science, ideals, and which of them was right.

21

THE “ANTI-BETTELHEIM”

M
any mornings, Eric Schopler stomped into his offices at the University of North Carolina straight from the barnyard of his farm, with the mud still on his boots. To his staff, that was part of their boss’s maverick charm—that he was as unpretentious as he was smart. Schopler was a psychologist who had started working on autism at UNC in 1964, arriving there after a stint working with children in Illinois. Soon after he reached North Carolina, in his late thirties, he adopted the look that became his trademark: a lumberjack shirt and work pants, sometimes topped off with a bow tie and sports coat. And boots with mud on them. He and his second wife, Miggie—also a psychologist—
kept bees, chickens, rabbits, a horse, and a cow.

Schopler’s signature contribution, among many others, was his early insistence that autism was organic and that
mothers, far from being blamed, should be seen as allies in the treatment of children. Of course, Bernard Rimland had made the point first, but he was a parent. Schopler, on the other hand, was a psychologist with no conflict of interest in standing up to the teachings of Bruno Bettelheim, with whom he crossed paths more than once. “There were a good many times,” one parent told author Richard Pollak, the Bettelheim critic,
“when Eric Schopler was our main defense against Bettelheim.”

Schopler graduated from the University of Chicago with a degree in psychology in 1949. Following a stint as a social worker for the Cook County Welfare Department in Chicago, he re-enrolled at Chicago to pursue a master’s degree in social service administration, which he completed. By 1955, he was at the Emma P. Bradley hospital for
troubled children, in Providence, Rhode Island, where he held the position of acting
chief psychiatric social worker.

When the hospital started planning a symposium on childhood psychosis, Schopler saw the
perfect opening to bring about a face-to-face meeting with Bruno Bettelheim, by nominating Bettelheim as a speaker. The hospital director rejected the idea on the grounds that Bettelheim’s “offensive manner of teaching” might be bad for staff morale.

Schopler then took it upon himself to inform Bettelheim, who had probably never even heard of the Emma P. Bradley hospital, that he had been rejected by the symposium planning committee. In the letter, he even mischievously told Bettelheim that he personally regretted that the famous man’s “effectiveness as a teacher was so curtailed” by his personality, because it was denying Schopler the chance to learn from him.

A few days later, Schopler received a written reply from Bettelheim inviting him to visit his Orthogenic School in Chicago for two weeks, so that he could see for himself what he “had to teach,” and not “go by what other people said” about him.

This would actually be Schopler’s second interaction with Bettelheim. As an undergraduate at Chicago in the late 1940s, he had attended a talk Bettelheim gave to a group of Jewish students in the university’s Hillel House. Like Bettelheim himself, Schopler was a European-born Jew who had escaped the Holocaust when his family fled Germany for the United States during his early childhood. But that night, as he often did, Bettelheim chided Jews in general for not trying hard enough to submerge their Jewishness, which he blamed for anti-Semitism. In the silence that followed, according to Schopler’s own account, he was the only student present who challenged Bettelheim, when he asked what difference there was, if any, between Bettelheim’s views on Jews and those of any ordinary anti-Semite. Supposedly, Bettelheim became angry and sputtered,
“I am only the doctor prescribing the cure!” Schopler persisted: “You mean by
identifying with the disease?” Bettelheim shouted again: “Yes, by identifying with the disease!”

Apparently, Bettelheim did not make the connection when Schopler wrote him from Rhode Island, though Schopler already knew that
he did not like Bettelheim when he arrived in Chicago for his two-week visit. Still, there was an allure to being offered such access to the Orthogenic School, since Bettelheim was notoriously choosy about whom he permitted past the front entrance. Parents, for example, were forever banished. Beyond that, Schopler had been forming plans to return to the University of Chicago for a PhD, and he thought there could be some advantage to knowing a recognized leader in the field, even one he did not particularly like.

Schopler found the Orthogenic School fascinating and disturbing at the same time. He took in the calculated cheeriness of the place—the gorgeous color scheme Bettelheim picked for every room, the oversized stuffed animals placed here and there, and the candy closet children could get into at almost any time. This was the physical manifestation of Bettelheim’s conviction that the “psychotic” children needed to be spoiled with sweetness, as a counterbalance to the coldness of their mothers.

Schopler did not witness Bettelheim slapping children,
as he was later accused of doing. But he saw him bully and badger the young women who made up his teaching staff, who struck Schopler as being in awe of the man, more acolytes than assistants. At daily staff meetings, he heard Bettelheim opine expansively on the progress of each of the forty or so children there, where he reliably spun out Freudian explanations for their autistic behaviors. Schopler found these interpretations unsatisfying; he couldn’t see that anything Bettelheim was doing within the school walls was working. Sometime that second week, or after, the thought crossed his mind:
Well, shit, I can do better than that
.

Schopler began work on a doctoral degree in clinical child development in 1962, simultaneously putting in hours as a therapist at Chicago’s Treatment and Research Center for Childhood Schizophrenia, which was affiliated with the Jewish Children’s Bureau. At the center, Schopler saw lots of autism, because childhood schizophrenia was then a diagnostic label generally considered synonymous with autism. At the same time, after seeing Bettelheim so miss the mark with his Freudian approach, Schopler resolved to construct a study for his dissertation that would rely on empirical research, not loose theory.

Schopler had become interested in how the children at the center
used their mouths and noses to examine the world—tasting dolls, smelling pencils, and so forth. He theorized that the children were taking in information using their “near” senses, which might be more meaningful for them than relying on the “distance” senses of vision and hearing. He approached Bettelheim for access to the children at the Orthogenic School in order to test his theory. Bettelheim flatly refused.
“Why is it you scientists always try to prove what we knew clinically all along?” he asked Schopler.

Bettelheim probably saw that Schopler’s study assumed a neurological basis to autism, which Bettelheim, with his psychoanalytic bias, considered absurd. “Of course I will not lend my children to silliness like that,” he told Schopler.

Schopler did his study anyway, with a different set of boys and girls. His results clearly showed that children with autism do exhibit certain preferences for information-gathering via these “near” senses, a curious insight in its own right and one that also demonstrated a neurological idiosyncrasy at play in autism. And yet, this research, which he published as his PhD dissertation in 1964, had little to do with Schopler’s later reputation as one of autism’s most influential personalities. It was not in neurology that he would make his mark. It was in education, where he built the first statewide network of schools for kids with autism. In his schools, parents were always welcome.

—

S
CHOPLER ARRIVED IN
North Carolina shortly after getting his PhD, attracted to the Southern US campus in part because his younger brother, John, was already a psychologist on the faculty there. Schopler’s first position was as a consulting psychologist to a UNC experiment known as the
“Psychotic Children’s Group.” As it turned out, taking part in this “experiment” would become one of the most bizarre experiences of his life.

Strictly speaking, it was not an autism investigation. The purpose of the experiment was to test a Freudian-inspired theory of group therapy on a set of “psychotic” three- and four-year-olds. Its designer, a psychiatrist named Rex Speers, had become intrigued by the idea that a single “group ego” could be reconstructed out of the kids’ “damaged”
and fragmented egos, by having them interact several hours a week in a 14-by-20-foot laboratory space. For a child to participate, the mother had to submit to group therapy as well, “to integrate her own infantile impulses and to deal with them at a conscious level.” Desperate families readily volunteered. One family drove 170 miles each way twice a week.

It did not take long for Schopler to understand exactly what he was seeing, because he had seen plenty of it already: these children had autism. He doubted that group psychotherapy for them or their mothers was going to do anybody much good.

Another young consultant, soon to become Schopler’s chief collaborator, reached the same conclusion. Robert Reichler, a twenty-six-year-old graduate of the Albert Einstein College of Medicine in New York City, came to North Carolina to continue his training in psychiatry. Reichler was also sent to work with the Psychotic Child Group. On his first day, standing behind the one-way mirror that ran the length of the laboratory, he watched a scene he found reminiscent of a medieval hell. The children had been given free run of the room. They were darting, spinning, throwing things, all in a din of wordless squeals, hoots, and screams that Reichler could hear through the glass. Absolute permissiveness was part of the therapy, on the premise that it would repair the damage inflicted by lack of love. As Reichler watched, a child urinated on the floor, with no one intervening. When she also defecated on the same spot, some of the boys began handling her feces, smearing them onto their own bodies. Others were banging their heads or each other. Clothing came off as the kids pleased, with genitals displayed and mutually explored. An adult therapist was in the room with the children, observing from a raised platform. From time to time, he threw in comments over the din, along the lines of “Jimmy, I can see you’re really angry with Tommy today.” Given the children’s obvious language deficits, Reichler could see no point in this haphazard attempt to communicate.

One four-year-old girl had a single comprehensible utterance, which she used over and over: “Goddamn. Goddamn.” Throughout all this, a record player in the corner was booming out the sound of a marching band. When, as the brass blared, one boy stood naked on a table
and urinated in a high arc directly at the mirror, Reichler knew he had seen enough. He decided that there was no way he would work in that room.