In a Different Key: The Story of Autism (40 page)

But Kaplan, in a confidential memo, had used language that could easily be read that way.
A policy that limits
. These words, in their most straightforward interpretation, suggested that in the early intervention program she ran for Westchester County, any child seeking ABA would be handed the same predetermined package of hours, one that came with a set ceiling. This, to Gary Mayerson, did not sound individualized at all.

—

B
Y A TOTAL FLUKE
, the law-alert memo fell into Mayerson’s hands in the late summer of 1996. The hearing on his son’s ABA was set for October, and Mayerson, a trial lawyer, had been preparing. He read more deeply on IDEA, studied similar cases fought by parents in New York State, and met personally with Ivar Lovaas to deepen his understanding of the method. He had found an expert witness he liked, Dr. Ira Cohen, a psychologist who appeared in Catherine Maurice’s
Let Me Hear Your Voice
. Dr. Cohen was ready to testify that the Mayersons’ son needed forty hours of ABA per week.

One weekend afternoon, Mayerson broke open a box of documents he had requested from the county. It contained a copy of his son’s file, which, under New York State’s Freedom of Information law, he was
entitled to see. Most of it was familiar to him already, but when he picked up two documents that were stuck together, he found himself reading something he had never seen before: Susanne Kaplan’s memo—the law alert. Or, as Mayerson always liked to call it afterward, the “smoking gun.”

Mayerson quickly understood that someone in Kaplan’s office had made a big mistake; this was not a document he was ever meant to see. It was most likely protected by client-attorney privilege and should not have been included in the papers sent to his house. But now it was too late; they had handed it to him, so the privilege was moot.

On the second page, Mayerson found the words that he would build his case around: “Currently we have a policy that limits…”

He could not quite believe that Susanne Kaplan had actually put that in writing. It made him both furiously indignant and fiercely exultant at the prospects of using it to prove what he believed: that the County of Westchester was screwing every child with autism out of what they all desperately needed: as many hours of ABA as possible.

He could hardly wait to get Susanne Kaplan in a witness chair, get her under oath, and confront her.

—

A
LL MORNING LONG
, Mayerson had made his disdain for the soft-spoken woman in the witness chair so obvious that even the judge thought it was too much. It was clear that even the lawyer’s looks and shrugs were rattling her.

“I am
trying
to answer,” Kaplan protested, “to the best of my ability.”

“Your body language is editorializing,” Judge Gerald Liepshutz scolded Mayerson. “I would ask you not to do that.”

It was, without doubt, the most acrimonious bout of questioning ever seen at 136 Prospect Avenue, in Mamaroneck, New York, which was not a courthouse but a public library whose conference room happened to be available for the day.

Kaplan was stunned. She had testified at due-process hearings before, but nothing remotely like this had ever happened. Her testimony had been going on for over an hour. “I am here to facilitate,” she had said early in the questioning. She had arrived hoping to be helpful, but
suddenly, she was being pilloried in front of people she didn’t know, by a parent, a lawyer, who was casting doubt on both her character and her ethics.

When Mayerson had started raising his voice at Kaplan again, Judge Liepshutz, reading the situation, counseled Mayerson to be careful.

“You are playing two roles, and I know it is hard to separate them,” Liepshutz broke in. “But that doesn’t change the fact,” Leipshutz continued, “that you are going to have to separate the parent’s role from the lawyer role.”

Mayerson apologized and resumed his line of questioning.

“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.”

—

T
HE
M
AYERSONS
’
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.

—

M
UCH AS
C
ATHERINE
M
AURICE
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 decades 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

F
or 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.