In a Different Key: The Story of Autism (39 page)

There had always been education-based lawsuits. Parents had sued the schools to change how their kids were disciplined or to start a girls’ basketball squad. Only rarely had autism education been at issue up until now.
But in the 1990s, schools were hit with a wave of “Lovaas cases,” as legal scholars tagged them. ABA funding had become “a
legally hot topic” and “a high stakes issue for both parents and schools,” in the words of legal and medical writers. One analysis showed the proportion of all special-education litigation centering on autism was now
ten times the actual proportion of special-ed students with autism. In other words, autism parents had begun disproportionately seeking legal recourse to get more ABA for their kids.

No one relished these battles. They were corrosive to the school-parent relationship, and there was something demoralizing about the prospect of seeing a school system’s budget drained to pay legal fees, with both sides putting so much effort into defeating the other. One family
employed an expert witness for their lawsuit who ended up billing taxpayers $135,832.67 for his expertise. On the other side, a mother and father in Oswego County, New York, showed up for a hearing
to get ABA funding, only to find that the school district had lined up seventeen witnesses to testify against spending the money. That schools would go to such extraordinary lengths to fight against parents—parents of children with disabilities, at that—showed them in a most unflattering light. Parents who bought in early to Lovaas’s ABA—who went online and read the stories of a 47 percent “recovery” rate—could conceive of no legitimate reason for schools not to fund it. When their requests for the therapy met official resistance—as they almost always did—it was a short leap from stunned disbelief to the suspicion that something rotten was happening inside the system. Gary Mayerson actually used an even more extreme word later when he talked about “the banality of evil” he saw himself fighting when he took on Westchester County.

Plenty of parents felt the same way. A parental movement as much as a therapy, ABA now had its own mantra, which showed up in online forums, in speeches at ABA conferences, and in brochures: “ABA is the only scientifically-based, medically-backed treatment that
is proven effective.” To frantic parents, for whom time was critical, the truth of the statement was self-evident: their children needed lots of ABA immediately. Parents could see no valid argument to the contrary.

But quite a few counterarguments existed, left over from both the antiaversive debate and the doubts about Lovaas’s methodology that had been raised by a wide array of his colleagues over the years. In
professional circles, as of the early 1990s, what Lovaas had been doing in his UCLA lab for the previous three decades still appeared, to many, to be extreme, unproven, and slightly fanatical. This alone gave school districts reason to question it.

There were other arguments as well. American education relies on professional credentialing—degrees in social work, teaching licenses, and so forth—but Lovaas’s program called for the therapy to be carried out by teams of high school and college students who would work in an autistic child’s home. This raised the major issue of quality control. To many in the special-education bureaucracy, it seemed irresponsible, possibly even dangerous, to fund thinly supervised, unprofessional first-time therapists working offsite with vulnerable children.

Indeed, in the first few years after Maurice’s book appeared, more experienced ABA practitioners had become concerned about the sudden flood of novice, lightly trained therapists entering the field. Slowly they started to establish stricter standards and certifications, but by the time the Mayersons asked for ABA, these were in place in only a handful of states. New York was not one of them.

School administrators also knew what ABA would cost: up to
$50,000 per child, to fund a team of teachers devoted just to that one child. That could only come at the cost of cutting back somewhere else in their budget, probably in some program—art, music, physical education—that served the entire student body. On top of misgivings about Lovaas’s approach in the first place, this seemed a high price to pay for what might be just another fad treatment. Besides, many districts across the country were already running autism programs that came with certified personnel who worked inside school walls and did not threaten to bust the education budget. Some of these were based on North Carolina’s TEACCH program or other variations that the schools knew and, more important, trusted.

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A
ND SO, ACROSS
the country, the battle increased in fury. At first, it seemed certain that the parents were the disadvantaged side. As litigants, they were taking on an opponent—school districts—that came with attorneys already on their payrolls and contingency funds to
cover legal costs. Under the terms of a 1986 amendment to the IDEA law, parents, on the other hand, could only expect state reimbursement if they won their cases. If they lost, they would have to live with those legal bills forever.

Parents faced another built-in disadvantage. Courts had a tendency, in education litigation, to defer to professional educators. When the issue was the actual content of the curriculum, judges, as a rule, did not want to be in the position of telling schools what or how to teach children. Given all this, when the “Lovaas cases” started to hit the system, the die seemed cast for the schools to win and for the parents to lose.

But something surprising began to happen starting around 1994. The schools started losing. Parents did not
always
win, and even if they did, they did not get everything they wanted. But it was a clear trend: families were starting to win.
Before 1996, they were winning more than half the cases brought to court. By 1996, it was 75 percent. Each win emboldened more parents to take the risk, especially as they saw the result. More kids like theirs were getting ABA services funded as schools complied with judges’ orders.
In Monroe County, New York, for example, one parents group, which in 1996 had reported only four families’ kids getting ABA, was able to boast that more than thirty families were getting it just a year later. Indeed, due to the same group’s pressure, every single school district in the 1,300 square miles surrounding Rochester, New York, was funding ABA for at least one child in 1997.

Suddenly, schools and county health departments were in a defensive crouch, sometimes spending more to fight parents than if they had just funded an ABA program in the first place. It was a bad position to be in. And it ensured that when Gary Mayerson made that phone call to his son’s caseworker, SueAnn Galante, in June of 1996, there was some muscle behind his threat. He was a lawyer, and he was not bluffing.

—

M
AYERSON
’
S CALL THAT
morning had created quite a stir. Galante,
who was furiously taking notes while Mayerson yelled in her ear, had
hung up and immediately hurried down the hall to the office of her boss, Susanne Kaplan, who held the post of Director of Services for Children with Disabilities. Kaplan was not especially familiar with the Mayerson case, as she generally left individual program details to her caseworkers, trusting their expertise to create appropriate plans for the children under their purview.

But after hearing what Mayerson had said to Galante,
Kaplan decided to contact her department’s attorney to ask how she and her staff should talk to the Mayersons from now on. They were still responsible for getting services for this child, but if this furious father was serious about suing, then anything her staff said could become ammunition to be used against them.

Kaplan, Galante, and two other staffers worked together on a memo to the county attorney, laying out their concerns. Galante would later describe it as
“a law alert.” They outlined the program the Mayersons’ boy had been offered versus what the parents wanted for him. They made sure to mention that Mayerson himself was “savvy legally” and repeated his remark about parents successfully suing school districts all over the United States to get ABA.

Having to worry about lawyers and lawsuits was not what any of these women had in mind when they went into special ed. Certainly not Susanne Kaplan, who had been in the field longer than any of them—and who had no clue, the moment she put her name on that memo, that she was stepping into a storm.

—

D
ESPITE HOW SHE
would soon be depicted, Susanne Kaplan was not known to be an enemy to parents, or in any way derelict in her duty to deliver services to children with disabilities. Her attainment of a middle-management position in Westchester, overseeing early intervention program delivery, was more a testament to her long tenure in the field than to any sort of politicking personality. Kaplan was, if anything, a mild-mannered, taciturn person, who had entered the disabilities field twenty-seven years earlier as a kindergarten teacher. She later earned a master’s degree in special ed and moved over into administration, the previous ten years of which she’d spent with Westchester
County. She was studious in affect, nonconfrontational in manner, and utterly lacking, by her own admission, a thick skin.

Neither was Kaplan an enemy of applied behavior analysis. In 1994, she had started
talking to Professor Janet Twyman, director of the Fred S. Keller School in Yonkers, New York, where the special-ed curriculum was designed around behavior analysis. At a time when other administrators around the country were mounting legal defenses against parent pressure for ABA, Kaplan was reaching out to Twyman as a potential partner for providing additional ABA services to families in Westchester.

Unfortunately, the Keller School lacked a deep enough bench of trained therapists to be able to deliver these additional services to the county with adequate monitoring and without compromising quality. Indeed, the “quality” question loomed large in Kaplan’s conversations with Twyman, who tried to impress upon her that an inflexible forty hours per week was too arbitrary a standard for framing an ABA program, and that the quality of therapists was a more meaningful benchmark than the quantity of the therapy.

Kaplan did eventually make the explicit request that Lovaas-style ABA be added to the official menu of services the state would pay for as of March 1994. Her main reason for doing so was that parents were already spending their own money to start programs, and she wanted to help.

Sure enough, the Mayersons, in July 1996, started their own ABA program. In the few weeks since Gary Mayerson’s furious phone call to county headquarters, there had been no resolution over the question of hours. The county had revised the Mayersons’ son’s proposed plan twice—first, increasing the ABA offer from eight to ten hours weekly, and later, adding ten hours weekly of “family training,” which involved a therapist instructing the parents on interacting with their son within an ABA framework. At one point, Gary Mayerson countered with an offer to pay almost half the cost of his son’s ABA if the department would go higher than thirty hours, but to no avail. The haggling dragged on, but the Mayersons felt they had no more time to waste. Their son needed therapy immediately.

In remarkably short order, Lilli Mayerson managed to pull an ABA
team together—all women with solid experience, with bachelor’s and master’s degrees. The first session began at their home in Mamaroneck on a Wednesday morning. Intensive meant intensive; by autumn, her son was getting twenty-five to thirty hours per week of ABA. And Gary was writing a lot of checks, averaging about $3,400 a month.

The work was exhausting for everyone, but it was exhilarating at the same time. Almost from the first day, the boy began to respond. Within two weeks, he started making and holding eye contact, while some of his classically autistic behaviors—such as flapping his hands—began to subside. Words began to have meaning for him, and he started to follow simple commands. After a few months, little by little, he began to mouth some words himself. It was painstaking, and primitive as communication goes, but each and every time it happened, it was a triumph. For this child, and for the argument in favor of ABA.

But during the hours when the child was not getting therapy—and was not the focus of some adult’s intense interaction—the flapping would return. Left to his own devices, he would pull back into his own world again. He would, to some degree, “regress,” in ABA terms. Not all the way to where he had started from, but still, it was a backslide.

The calculus seemed clear to the Mayersons: the more ABA their son got, the faster he would connect, and the less time he would have to lose ground. So Gary Mayerson asked for a due process hearing, which would get the argument in front of a judge. He also decided that he would act as his son’s lawyer and handle the case himself. He wanted to be the one who showed the program for what he thought it was—inadequate, unresponsive, unfair. All he needed was some ammunition.

—

W
HEN
S
USANNE
K
APLAN
wrote that “law alert” memo to the county attorney, she had specifically raised the concern that Mayerson would attempt to use her or her staff’s words against them. Her worry would prove to be justified when Gary Mayerson ended up making the memo itself the primary exhibit in his case against the county.

When she composed the alert, Kaplan had added a sentence for the edification of the county attorney. “Currently,” she had written, “we
are following
a policy that limits [early intervention] ABA therapy to ten hours a week.”

There was a problem with her use of the words “policy” and “limits.” Everyone knew what the law required, especially after several court rulings on IDEA cases in the 1980s. Schools had to offer each child with a disability an individualized program, tailored to his or her specific needs. The court required that the program be reasonably calculated to deliver a
“meaningful educational benefit.” That did not mean that it had to be the best program imaginable. Indeed, in creating what was known as the “Cadillac-Chevrolet” standard, the courts had told schools that a “Cadillac” program was unnecessary. Giving a kid a “Chevrolet” program was adequate, as long as the vehicle provided was decked out meaningfully and
adequately for each different child. The customization aspect was critical. Judges did not look fondly upon school systems falling back on one-size-fits-all offerings.