by John Donvan
“Explain this one,” Mayerson demanded, holding up a copy of the “law alert” memo as he read aloud the sentence Kaplan had written about the county limiting ABA to ten hours a week.
The answer Kaplan gave would never satisfy Mayerson, but she would maintain, from that moment and ever afterward, that it was the truth. The ten hours, she said, were not an upper limit on ABA. They were just a starting point, a baseline. “We look at it as a way of beginning,” she said. This was the number they started out with for very young children, to see whether they could handle the intensity of the therapy before considering an increase in hours.
As a guideline, it sounded reasonable. But Mayerson quickly reminded Kaplan of her memo’s telltale sentence—we have been following a policy that limits. That said nothing about starting low and going higher.
“It doesn’t say that here on the memo,” Mayerson pressed. “You are telling me it means something different than what it says on the paper, right?”
What mattered wasn’t the memo language, Kaplan tried to explain, but that her staff was trying to balance concerns about overstressing the twelve- and eighteen-month-old children who might get ABA.
“This is our way of beginning,” she repeated.
And yet again, and for the last time, Mayerson said what was obvious—not just to him, but now also to the judge, to the county attorney, and to Kaplan herself.
“It doesn’t say that on the memo, does it?” he asked.
“No,” Kaplan finally responded, realizing that continuing to argue the point was futile. “It does not.”
Mayerson spent the rest of that morning painting Kaplan as one of the bad guys, in every way he could—by asking her directly, again and again, if she was trying to mislead everyone, and by rattling her with questions she had already answered at least once already. Weary, wounded, and flustered, Kaplan, in the middle of an exchange concerning what factors went into the design of Mayerson’s son’s program, finally blurted out, “I don’t know what you’re searching for.”
Mayerson took the moment for what it was—the perfect setup for the perfect courtroom line.
“I am searching for the truth,” he intoned. “That’s all I am searching for.”
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THE MAYERSONS’ DUE-PROCESS hearing took up nine full days of testimony, spread over two months. In April 1997, Judge Liepshutz found that the county’s program for the Mayersons’ son had been inadequate, and that the family was owed $20,287.50 for the ABA they had already paid for themselves. He then ordered the county to continue funding their home program through August of 1997 for “32 to 40 hours per week.” As for ABA, he concluded that “ABA therapy is appropriate for autistic children and is extremely effective with these children.” It was everything Gary Mayerson had set out to get for his son.
Gary Mayerson had seen the lack of adequate funding for ABA as an emergency requiring urgent attention. He knew that to get anywhere, he would need to create an emergency for the county, which he did, by pummeling a midlevel executive who only had the best intentions. The feeling among Susanne Kaplan’s colleagues was that she was a good woman who had not deserved to be demonized. Her professional record supported that. But it was highly likely that if Gary Mayerson had not played so rough, he would not have made much headway in getting the ABA money. Even absent the conspiracy he seemed to think was in place, plain bureaucratic inertia and the shortage of qualified ABA therapists would likely have kept his son from getting more hours than the county was prepared to give.
His performance may have seemed harsh to those in the school district, but to the autism community, Mayerson’s win in Westchester made him a hero. Autism parents all over the United States wanted Mayerson to be their lawyer too. Not long after, he resigned from his big New York firm to become a specialist attorney, representing families in special-education battles. Nearly two decades later, his son, who once could not speak, vindicated his father’s fight by starting college.
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MUCH AS CATHERINE MAURICE had almost single-handedly made Ivar Lovaas’s name famous among autism parents, these “Lovaas cases,” brought to court by parents, pushed ABA into the consciousness of the government entities that ran education and health policy. Although they were resistant at first, the policymakers ultimately did a turnabout on the therapy.
In 1999, the New York Department of Health published its first-ever set of “Clinical Practice Guidelines” for early intervention, in which it endorsed ABA as “an important element in any intervention program for young children with autism.” A few months later, the first-ever US Surgeon General’s Report on Mental Health, a mammoth review of the mental health landscape, declared that “thirty years of research demonstrated the efficacy of applied behavioral methods.” It even called Lovaas’s 1987 study a “well-designed” piece of research. As the new millennium began, more schools than ever were agreeing to offer ABA.
But not all schools had waved the white flag. After losing so often in the mid-1990s, education authorities had wised up about how to start winning again. Paradoxically, saying yes to ABA became part of a strategy counseled by legal consultants such as Melinda Baird. Formerly an in-house attorney for Tennessee’s Office of Special Education Programs, Baird went out on her own in 1996, on the gamble that a business existed around advising individual school districts and representing them in hearings. By 2001, she had handled cases all over Tennessee, Alabama, and Florida, and run hundreds of workshops for school personnel on how to avoid litigation. In 2000, she composed a paper called “Building a Blueprint for an Appropriate and Defensible Autism Program.” Among measures for avoiding seeing autism parents in litigation, she encouraged schools to strive to use an “eclectic approach,” using a variety of methods, including ABA, based on the needs of the individual child.
This so-called eclectic approach was adopted in many parts of the United States, resulting in individualized programs in which ABA is offered in small doses—only one or two hours a week in some places—but in concert with other services, such as speech or occupational therapy, sensory integration, playtime, music therapy, or time in a TEACCH classroom. The argument used here was that a combination of therapies was better than just one—a claim that remained debatable. However, the eclectic approach did clearly benefit school administrators, because it offered a shield against the charge that they were denying children some vital therapy.
Some communities, however, made a greater commitment to ABA. Indiana, New Jersey, New York, Massachusetts, and to some degree California became known as places where the programs were relatively generous with the hours the schools would fund. These local differences were in part due to aggressive parent activism—the Gary Mayerson effect—and in part due to sympathetic local judiciaries that backed the parents in litigation. Some families relocated to these states for that reason alone, just as earlier autism parents once moved to North Carolina to get access to TEACCH.
At the same time, the term ABA began to have different meanings in different places. Even as the “Lovaas cases” opened the schoolhouse door, competing versions of applied behavior analysis slipped through it and gained a foothold. They had acronyms of their own—PRT and SCERTS and DRI and RDI and VBA and PBS and ESDM—yet all legitimately claimed to be based on applied behavior analysis. Many tried to be more “naturalistic” than the Lovaas approach, less rigid and more open to taking cues from the students. Today, even the Lovaas Institute—which owns rights to the original method—strives to make its exercises more child-centered and more fun.
In the end, ABA, once regarded as a fringe, faddish, overhyped approach to autism, had become mainstream. It was taken as a given—backed up by numerous studies—that some ABA was far better than none, and that some children made enormous progress because of it. Their IQ scores went up and their language skills improved. As for the controversial finding that had set off the huge demand for ABA in the first place—the 47 percent recovery rate Lovaas claimed in 1987—nearly two decad
es would pass before it was credibly replicated. In 2005, Glen Sallows and Tamlynn Graupner, founders of the Wisconsin Early Autism Project, published the results of a four-year controlled study of the efficacy of a treatment that was a close variant of Lovaas’s ABA. They reported that 48 percent of the children achieved higher IQs and fluent speech, and were, by the age of seven, performing well and making friends in regular classrooms. The treatment was not a letter-perfect reproduction of Lovaas’s techniques. For example, Sallows and Graupner used no aversives, and other therapies were added to the mix. Nevertheless, the study received high marks for its methodology, even from skeptics, and it was seen as bolstering Lovaas’s original claim.
In a practical sense, however, the new proof was superfluous. ABA had already won the war for acceptance. And few doubted that Lovaas had discovered something important while at UCLA. That said, his work did not shed much light on what autism was at its core—a question that Lovaas did not even try to tackle, and that behavior analysts considered largely irrelevant to the effectiveness of their treatment.
But they were not the only scientists to focus their energies on children with autism. Another group of investigators, on the other side of the Atlantic, took the study of autism in a new direction. To them, understanding the essential nature of autism was not beside the point. It was the point.
PART V
THE QUESTIONS ASKED IN LONDON
1960s–1990s
25
THE QUESTIONS ASKED
For years, only policemen ever slept inside the brick house that sat halfway down Florence Road, a short street of mostly single-family homes located in the London neighborhood of Ealing. Crammed full of beds, it served as a dormitory for employees of Britain’s National Railway—specifically, for its uniformed police force. That ended, however, in 1965, when the train cops moved out, and children with autism moved in.
After that, the place was used to make autism history.
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IN THE 1960s AND 1970s, Britain was as short on autism researchers as the United States. The few who did study the topic were concentrated around London, and most knew one another well. They were also in fruitful contact with their colleagues in the States. Indeed, after World War II, British and American scientists had come to dominate the investigation of the human mind, unseating their German-speaking colleagues as the leading influences in the field.
Not surprisingly, the scant literature on autism that existed focused almost exclusively on American or British children. Mention of other nationalities in the autism literature was so rare for so long that the mere fact of speaking English could almost have been mistaken for a risk factor for autism.
Yet despite their common language, American and British researchers had noticeably different priorities. Americans sought to treat—and even cure—autism. Among researchers in the United States, there was a sense of emergency, a drive to find solutions as soon as possible. In Britain, the approach was calmer, aimed more at finding an explanation for autism. Driven more by curiosity, British researchers sought to map the contours of autism and understand the autistic mind.
The British approach—which they stuck with for the next five decades—produced a distinctive set of outcomes. A small group of British-trained experimental psychologists and research psychiatrists came up with insights that permanently altered how autism was perceived and understood around the world.
The British, too, always kept one eye on a larger question: What does autism reveal about the workings of the human mind in general? That is not to suggest that these scientists were not motivated by the wish to bring relief to the children and their families. But at the same time, the children were considered rare and fascinating subjects, fortuitously available in one place—that house on Florence Road.
Indeed, hardly an autism study took place in Britain in the 1960s that did not take the researcher to that address. First, though, the parents had to get the place up and running.
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IT DOES NOT do justice to the early organizing efforts of British autism parents to say they merely paralleled those of American parents. That is because, in many important respects, the British parents were the actual innovators. They did it first, and then the American parents consciously followed their lead. The British were the first, for example, to organize a national society in 1962. They were the first to use the newspapers to get their story told. They were the first to pick a puzzle piece for their logo—which would be copied again and again by autism groups around the world.
They did not, however, build the first autism school. A few had already been established in and around New York City around 1960. But the school they did build was the first to develop a global reputation, drawing visitors from around the world. Originally called the Society School for Autistic Children, it became renowned for proving that such children could be educated. For that, much of the credit must go to the matronly woman who lived on the top floor—a naturally gifted teacher named Sybil Elgar.
For Elgar, working with children with autism was a second chance in life. She had trained as a mortician just after World War II, but only ever worked as a government clerk, and then as a school secretary. In middle age, she was obliged to leave the paid workforce entirely to care full-time for her sick mother. In these narrowing circumstances, well into her forties, Elgar signed up for a correspondence course on how to be a teacher.
It was a slow and tedious way to enter a new profession, since her contact with professors took place entirely through the mail. It did require, however, that she get some periods of exposure to actual children in a classroom. In 1958, she fulfilled part of that requirement by spending a day at the Marlborough Day Hospital in London’s St. John’s Wood neighborhood, on the ward designated for children labeled “severely emotionally disturbed.” She did not then realize it, but many of the children she saw that day would have qualified for diagnoses of autism.
Her day at Marlborough sickened Elgar emotionally. It was a classic scene of institutional life: the children were bereft of attention or meaningful stimulation, and they certainly were not learning anything useful. Elgar confided in friends that the place was “soul-destroying.” Haunted by the memory, she made a return visit in 1960, hoping to see improvement. When she saw none, she resolved to start a school of her own for exactly these sorts of children, ones who had no champion. She was forty-six years old.
Two years later, Elgar began working with six boys in the basement of her North London home, all six of whom had been labeled “severely emotionally disturbed.” The diagnosis of autism, which would have fit at least some of them, was still not familiar to most clinicians. Elgar had never heard of it. By 1963, however, she was recognizing the relevance of the concept to her work. She approached three London-based child psychiatrists to offer spaces in her school to any of their patients with the condition. Unimpressed by her credentials, not to mention her working-class accent, none of them took her seriously.
The mother of a boy with autism did, however. Helen Green Allison was an American in London whose son Joe, born in 1957, was diagnosed with autism by the age of four. Allison had been living in Britain since World War II, when she arrived to study at Oxford, and stayed to work in military intelligence. In 1961, she went on the BBC Women’s Hour radio program to talk about her son. After that appearance, she was contacted by families from all over Britain who had similar stories. She was the mother who, along with a small group of other parents, launched the world’s first autism advocacy group, using a name they instantly regretted: the Society for Psychotic Children. Within months, they rechristened themselves the National Society for Autistic Children.
By this time, Allison had Joe in Sybil Elgar’s little school. On his first day there, he smashed every lightbulb in the basement schoolroom. Elgar was unperturbed. She replaced the bulbs, then set out to connect with this wildly behaving boy. Watching, and improvising, she soon saw that Joe learned better when he was shown how to do somet
hing—even simple-seeming tasks like sitting down in a chair—rather than having it explained to him with words. By instinct, Elgar had stumbled onto an important insight: visual processing tends to trump auditory processing in some children with autism. In itself, this was evidence of a neurological basis to the condition, but in 1963, it was a possibility that university researchers were barely beginning to consider. Elgar also experimented with imposing structure on the children’s activities. She set strict schedules and established boundaries around work and play areas. By doing so, the self-taught teacher was overruling the professional psychoanalysts, who were still recommending environments of unlimited freedom to unshackle egos boxed in by unloving mothers. When that failed to work, as it invariably did, their next suggestion was usually an institution.
But Elgar’s method got results. Joe settled down and even began using words for the first time. When Helen Allison shared this with other parents, Elgar found her teaching in much higher demand. The National Society decided to fund a bigger school, because Elgar’s basement had run out of space. Elgar’s husband, Jack, a former railway clerk, happened to hear about a policemen’s dormitory coming up for sale in 1964. The society put in a timely bid, and the Elgars ended up living on the top floor of the house at 10 Florence Road.
The Society School for Autistic Children soon expanded into the two houses on either side of number 10. Money came from government and from private donors, including celebrities, among which were three of the Beatles, who spent hours playing with the kids. Eric Schopler crossed the Atlantic for a look inside, taking home new ideas that he blended into his own program in North Carolina. This master teacher, Sybil Elgar, would eventually be honored by the queen. The parents honored her as well, when they renamed her school “The Sybil Elgar School” in gratitude for what she was doing there every single day: proving that children with autism could be taught.