In a Different Key: The Story of Autism (33 page)

That insight would prove true, again and again, in the years ahead. But in May of 1965, when the
LIFE
story appeared, it was already to Lovaas’s advantage that Bernie Rimland personally was so enthusiastic about his work on ABA. Lovaas forwarded the contact information of all the parents clamoring to get into the UCLA program to Rimland, and Rimland, as he always would, reached out to every single one of them, writing long, personal, thoughtful letters.

The timing was perfect for Rimland as well; he was just then starting to recruit members for the national autism organization he was forming. In the coming months, he would be on the road often, meeting with parents in living rooms and church basements. He wanted to give them hope, so he talked often about the work in Lovaas’s lab. Not every parent was convinced. Some had seen the pictures in
LIFE
and
would ask, “But isn’t that the place where they beat up the children?” Rimland was ready for that one. He told them that punishment was minimally used, and that positive reinforcement was the backbone of the method. He also vouched, again, for how well it worked, and he vouched for the man—the UCLA researcher—himself.

Lovaas, Rimland told all, was “one of the only professionals who really cares about these kids.”

At the time, that was mostly true.

And in 1965, Lovaas was still just getting started.

20

THE AVERSION TO AVERSIVES

I
n 1981,
Lovaas had squeezed everything he had figured out about teaching children with autism into thirty-eight short, simple chapters, put them between a set of soft covers, and published them. He had spent a decade and a half refining his method, and his book represented the culmination of that work. It was called
Teaching Developmentally Disabled Children
, but would always be better known by its quirky subtitle,
The ME Book
—a nod to the child who stood to become more fully himself, more fully “me,” through correct application of the contents. It was a do-it-yourself handbook for parents who wanted to practice ABA on their own, and it was the first of its kind. In his preface, Lovaas told readers they would be practicing the very same techniques he used in his lab: breaking complex skills into small components, reinforced by frequent rewards and occasional punishments.

With
The ME Book
, Lovaas followed through on his insight that parents would make good allies by making them a vital part of their children’s therapy. Doing so solved a number of problems at the same time. He had discovered, for example, that in order to make progress, children needed to be in a full-time teaching environment—as in, every waking hour. In other words, the adults in their lives needed to construct every moment so as to reinforce the lessons being taught. Lovaas had always regretted that this wasn’t possible with the first groups of children he had studied in the 1960s—children like Linda, Gregg, and John, all of whom likely relapsed when they
returned to the institutions where they lived. Parents, however, could reinforce lessons daily.

Additionally, Lovaas’s data told him that most children needed ABA instruction on the order of twenty to sixty hours per week. Even if the state hospital had permitted him to start an ABA program on its premises, it is unlikely that the administration would have provided enough staff to work intensively with even one child for anything close to that amount of time. But a motivated mother, he reasoned, would spend all day working with her child, if that was what it took.

Lovaas had also found that location mattered. While children could master certain skills when sitting in one of his small, bare experimental rooms at UCLA, some of them proved unable to reproduce the performance in any other setting. They could point to all the chairs in the room when asked to “point at chair,” as long as they were in the same lab, with the same chairs, where they had learned the lesson. But when asked to do the same in another building, with different chairs, they failed to grasp the task. In behavioral terms, they had not “generalized” the chair-recognizing skill sufficiently to use it in changed circumstances.

The ME Book
program was designed to address these problems. It called for teaching the kids at home, with their mothers and fathers taking the lead, guided by the book and by a set of videotapes Lovaas had produced, which showed his students running ABA sessions. He warned parents that it was probably too much to take on the job alone, so he recommended they recruit high school and college students in order to put together a team of four to eight teachers, who would work with the child in shifts. The recommended program required twenty to sixty hours per week for two to three years early in the child’s life. That, in essence, is what came to be called the “Lovaas Model” of applied behavior analysis.

—

T
HE
L
OVAAS
M
ODEL
faced strong headwinds when
The ME Book
arrived in 1981. The problem could be found in a single sentence on page 16: “A swat on the behind is almost always effective, if it is hard enough so that it smarts.” In short, Lovaas was still advocating the use of “aversive therapy,” what behaviorists also called “punishment.” To be sure,
The ME Book
regarded this as a tool to be used sparingly. On
an early page, a warning to readers appears inside a black box: “the authors and publishers wish to emphasize that the training programs related to aversive therapy contained herein should
not
be undertaken without professional guidance.”

The book was also adamant that punishment be used in as calculated and scientific a way as possible: “You have to keep a record when you use strong discipline to make sure that the behavior you punish is decreasing. That is the only
justification for using aversives.” Lovaas pointed out that punishment did not necessarily have to be physical to be effective. A sharp “no” counted too.

These recommended measures seemed a good deal less harsh than the slaps across the face Lovaas had sanctioned in the 1960s—but that did not rescue his method from facing harsh criticism. As it happened,
The ME Book
arrived just as the opening salvos were being fired in the coming war over aversives.
The year of its publication, 1981, was the same year that the Association for the Severely Handicapped (TASH) became the first national group to adopt an official position against the use of behavioral punishment in the education of children or adults. Other groups followed suit, in a campaign that increasingly made pain-for-progress a losing argument.

On this score, ABA had a serious image problem. It was the hangover effect of Lovaas’s Hot-Shot—the cattle prod he had used on those first kids—and everything it stood for. Even Bruno Bettelheim had once attacked Lovaas by name, saying that his methods turned children into “pliable robots…reduced to the level of Pavlovian dogs.” Throughout the 1980s, the so-called aversives issue, which centered on ABA’s willingness to use punishment to change behavior, was the most controversial aspect of the practice. It nudged aside the refrigerator-mother argument—which lost steam throughout the 1970s—to become autism’s next great defining conflict. In
Science
, Louisiana State University psychologist Johnny Matson would call it
“perhaps the single most frequently discussed issue in the field of developmental disabilities.”

The conflict began, and persisted, primarily as a battle among professionals, although parents were dragged into it too. Insults were hurled and friendships destroyed, as well-intentioned people on both sides went to war over one of the most fundamental ethical dilemmas:
When do the ends justify the means?
This was reframed, in the autism argument, as an urgent and inseparable pair of questions: Was it wrong to use punishment to treat severely disabled people who are hurting themselves? Or was it wrong
not
to?

Bernie Rimland weighed in on the topic in 1988: “While the use of electric shock on an autistic person is repugnant to me also, it is not nearly so repugnant as some of the things self-injurious people do to themselves, such as causing blindness, fracturing skulls, and in one case,
chewing off both thumbs.” If his own son Mark had been self-injurious, he said, he would certainly have considered using aversives to stop it.

For Mooza Grant, the original president of the National Society for Autistic Children, the debate was not theoretical. She had two teenage girls with autism—the younger of whom, Linda, had mauled her own ears into permanent scar tissue by constantly slamming her head onto hard surfaces. Both parents were determined to keep their girls at home. “I
couldn’t envision sitting with roses growing outside my house and my child being in an institution,” Mooza once said.

But Linda was violent every minute of every hour. Considering it cruel to keep her in restraints full-time or sunk inside a drug-induced fog, Mooza’s husband Leslie Grant went down into the basement of their home in Chevy Chase, Maryland, and built a prototype shock-dealing device of his own design. He built a helmet with sensors inside, so that whenever Linda hit something hard with her head, the sensors would activate an electrode strapped to the girl’s arm or leg, giving her a shock powered by a nine-volt battery, the intensity of which he compared to being smacked with a hard-hit tennis ball. In the 1970s, the Grants reported that their daughter, who had been hurting herself for fifteen years, stopped doing so
within days of the helmet being fixed into place on her head.

Seeking to refine the device, they recruited a team at the Johns Hopkins Applied Physics Labs. Over four years, the team managed to build a more compact version with a remote-control and a counter to keep track of the number of shocks during any given time period. The resulting product, which went into small-scale commercial production at a plant in Florida, was called the SIBIS—the Self-Injurious Behavior
Inhibiting System. As of 1988, some twenty-five children were reported to have worn the SIBIS—all with positive results. Rimland told parents that self-injury was so successfully suppressed in six of these early SIBIS wearers that they no longer needed to wear the device.

But that’s what made the SIBIS so dangerous, in the eyes of its opponents. It showed how seductive the employment of shock could be. Users might conclude that if
some
shock produced improved behavior, then more shock would produce additional improved behavior. Punishment could easily become a self-justifying instrument, employed indefinitely.

At the same time, the SIBIS was a superb propaganda target. A black-strapped head harness giving children shocks—it looked sinister and sounded wrong. And while there were never more than a few in use at any one time, anywhere in the country, the horror they inspired served a purpose for those who campaigned against any kind of aversive—from slaps and pinches and foul-tasting sprays aimed into people’s mouths at the harsher end, to time-outs and a technique called “overcorrection.” With overcorrection, a person who spilled his juice on the floor in a dining hall would be made to refill his own cup, and then to refill the cups of everyone else at the table. Even this, to critics of aversives, was inappropriate, undeserved, and an assault on dignity.

By the mid-1980s, the antiaversive backlash had been joined by disability-rights groups, parent organizations, and several prominent education specialists. This opposition would not win—not exactly—but it would greatly influence the conversation. The movement’s emotional appeal was strong, and its logic was consistent with one of the more persuasive arguments then being made for shutting down large mental institutions. That argument was, simply, that the disabled have rights, just like everyone else. And that just as locking them away in big buildings merely for being different was wrong, so was forcing them into unpleasant, aversive experiences merely for being difficult to teach.

The argument caught fire among many constituencies. In 1988, the Autism Society of America adopted
a position against “aversive techniques.” Many parents also voiced opposition, even some who were struggling at home with children who were hurting themselves.
Unflattering comparisons were made to child abusers, Nazi doctors, and police states. “Permitting punishment is like living in Berlin,” declared one activist at an open meeting of the neutral Developmental Disabilities Planning Council,
“and ignoring a nuclear holocaust.” Protesters threatened to picket events featuring speakers known to support aversives as a conditioning tool. The Spanish Inquisition was invoked by one influential antiaversives activist, Anne Donnellan, who coauthored an attack on Lovaas and some other behavior analysts. Their sin was to have laid out, in a paper, a set of protocols for the appropriate use of aversives.
Donnellan likened this paper to a legendary treatise called the
Malleus Maleficarum
, published in Latin in 1486. The obscure reference sent all the social scientists rushing for their encyclopedias, where they learned that the
Malleus Maleficarum
—or
The Witches’ Hammer
—was a witch-hunters manual, written by two German priests for the Spanish Inquisition, offering guidance on the use of torture to get their questions answered. This did not go over well with those Donnellan was criticizing.

But the mud flew in the opposite direction as well, hurled back at the antiaversive campaigners by mainstream behaviorists. Drawing comparisons with harsh but beneficial medical treatments like radical surgery or chemotherapy, this group considered it immoral not to employ pain, minimally and with strict controls, for the relief it would bring in the long run. For the most part, however, they didn’t bother to disparage the morals of those who disagreed with them. Instead, they mocked their lack of scientific seriousness. Psychologist Richard Foxx would speak of the “fanaticism” of the antiaversive movement, of their reliance on ideology rather than data. He scorned their
“political correctness” and their penchant for “playing fast and loose with citations.”