In a Different Key: The Story of Autism (38 page)

For the next few years, while working toward her master’s in education at Columbia University, Taylor continued working with families on a private basis. She had become a complete convert to applied behavior analysis, though she still found that few people she knew had even heard of ABA. Fewer still were familiar with anyone named Lovaas.

—

T
HE JOB NOTICE
had been posted at Columbia and a few other locations by a New York mother who lived in one of Manhattan’s poshest neighborhoods. Affluent and well educated—with a PhD in French literature and literary criticism—Catherine Maurice (a pseudonym) would later describe herself as feeling lost and frightened that early winter of 1988. Weeks earlier, just before Christmas, she had given birth to a boy, Michel. That made three children at home now, all under the age of four years old. But it was not the burden of managing all three at once that weighed on her. A child specialist had recently informed her and her husband, Marc, that their middle child, their only girl, Anne-Marie, had autism.

Maurice had already sensed something was not right with Anne-Marie. Not quite two years old, the girl had given her parents the impression of slipping away with each month that followed her first birthday. At one point, she had built up to a vocabulary of about ten words, including “Hi, Daddy,” but then she stopped using all of them. She was ignoring the sound of her mother’s voice and not even looking up when her name was called. She did not play with toys in any normal way. Given a Big Bird doll, she used its beak to touch points on the wall. Most recently, she had begun banging her head on the floor during long stretches when she did nothing but cry inconsolably.

When Anne-Marie was diagnosed with autism, Maurice was terrified for her.

Everything she read told her that autism was a lifelong condition and that there was no such thing as recovery. She was offered play therapy for Anne-Marie, which was much in vogue at the time, though it had little track record as being successful for autism. She also tried something called “holding therapy,” which involved the two of them keeping a close embrace for long periods of time.

Then, one morning, her sister called from Chicago, where a day earlier, her husband happened to glance at a slightly dated copy of
Psychology Today
in the waiting room of his dentist’s office. Flipping through it, he had come across an article called “Saving Grace,” which told the story of an astounding breakthrough in autism treatment documented at UCLA, where children were actually recovering from autism.
Recovered
—that’s how the magazine put it. It was the very thing Maurice had read was impossible. But her sister was telling her that the impossible was being done by someone named Ivar Lovaas.

Maurice immediately called Lovaas’s clinic in California for an appointment. An empathetic staffer named Joanne broke it to Maurice gently that, at the present time, the clinic had no open slots. Ever since the
Psychology Today
story, they had been overwhelmed with inquiries and were fully booked for months to come. But Joanne mentioned that Maurice could order
The ME Book
, and that the accompanying videotapes would guide her in setting up a home-based ABA program, while using clinic staff as long-distance consultants.

When the package arrived, Maurice and her husband sat down
together to watch the tapes. They both found them disturbing, with their scenes of kids forced into repetitions of meaningless-seeming actions, like raising their arms over their heads. The book unsettled Maurice too. It referred to using spanking and sharp reprimands to keep the kids focused. Never, she thought to herself, would she subject Anne-Marie to a regimen of such punishment. Still, she and Marc talked it over, and they decided to run an ABA program out of their apartment.

Then Bridget Taylor walked into their lives. She phoned the very day she found the job listing. When she arrived for the interview, she struck Maurice as perhaps too young to know much about teaching a child with autism. Taylor sold herself, however, the moment Maurice mentioned the name Lovaas and produced her brand-new copy of
The ME Book
. Taylor broke in to explain that she knew all about the UCLA work and told Maurice that she had been using the methods Lovaas developed for several years already, though with some modifications. She did not, for example, use aversives. Maurice hired Taylor on the spot.

—

L
OOK AT ME
. Those were the words Bridget Taylor used to kick off the first of hundreds of hours of discrete trial sessions for Anne-Marie. In
The ME Book
, “look at me” is lesson one, based on the premise that eye contact with the teacher assured attention, and that attention was a prerequisite to learning. That first day, Taylor sat with a weeping, struggling Anne-Marie, who appeared deeply unhappy about this stranger making her sit back down whenever she tried to stand up to leave. Taylor sat in front of her repeating the same phrase—“Look at me”—over and over again. If Anne-Marie looked at her, she got a Goldfish cracker and a smile from Taylor, who called out delightedly, “Good looking, Anne-Marie!”

Maurice, watching, was torn. Her motherly instinct was to intervene, to rescue Anne-Marie from a situation that was obviously making her miserable, day after day. In the first few weeks of it, she seriously considered pulling the plug and telling Taylor not to come back.

But week by week, slowly at first, Maurice could see that Anne-Marie
was beginning to connect in new ways to the world around her. First, Anne-Marie began looking at Taylor. Then, she was looking at her mother. She was learning to point, and to hug, and to use words again. A turning point was reached when Anne-Marie’s steady advances started to accelerate. More words came, more eye contact, and then, one day, when her mother was in the kitchen fixing a bottle for her baby brother, Anne-Marie wandered in, calling out “Mommy, Mommy”—truly seeking out her mother.

A short time after that, once the ABA had been proceeding for several months, her parents took Anne-Marie to one of the specialists who had confirmed her autism diagnosis at the start of this journey. The doctor was astonished at the progress the little girl had made and offered his opinion that in all the basic measurable skill levels—“in communication, in social behavior, in motor skills, in daily living skills”—Anne-Marie “has moved into the clearly normal range.”

In essence, after approximately half a year of intensive ABA, plus other therapies including speech and occupational therapy, Anne-Marie’s autistic behaviors were in retreat. Evaluations conducted roughly another six months later confirmed this, while allowing for the persistence of a few quite minor trace elements of autistic personality, referred to as “residua”—essentially, leftovers. But in the important ways—in her connection to people, and her ability to reason, to learn, and to grow independently—Anne-Marie was one of the “recovered.” Thanks to Bridget Taylor and the team of therapists she led—and the methods in
The ME Book
—Anne-Marie had joined Lovaas’s 47 percent.

And then, amazingly, Taylor and the team did it a second time—a second child, and a second recovery, in the same family. Just as Anne-Marie was shedding her autism diagnosis, her baby brother, Michel, was given one. Like his sister before him, Michel had first acquired words as a toddler and then quickly lost them while appearing to detach from the people around him. After a series of evaluations, doctors told Maurice it was definite: Michel’s behaviors added up to autism.

While devastated by this, Maurice was anything but defeated. Taylor started all over again. More therapists were brought in and trained to perform ABA with Michel. As before, Maurice also employed a speech therapist. Michel proved, in some ways, more difficult than his
sister, as he was given to sudden and intense tantrums. Yet, once again, the program produced spectacular results. Michel, evaluated again after more than a year of treatment, joined his sister in the ranks of the “recovered.”

—

I
N
1991, C
ATHERINE
M
AURICE
began writing an account of what her family had gone through, and what ABA had achieved for her children. To be sure, other individual writers before her had managed to reshape the narrative of autism completely, for better or for worse.
Bruno Bettelheim had told the bestselling story of mother blaming.
Bernard Rimland’s book took down Bettelheim and his theories.
Clara Park’s 1966
The Siege
, the first mother’s memoir, had inspired many young people, including Bridget Taylor, to enter the field, and also helped build a parent community.
The ME Book
, of course, launched many a would-be ABA therapist onto the scene.

But the book Maurice produced, in terms of its impact on the autism world, was in a class by itself. Maurice, it turned out, was a superbly good writer, and more important, she knew how to inspire hope. Published in 1993, it was called
Let Me Hear Your Voice
. Its influence would be felt in homes, in schools, in research laboratories, and ultimately, in courtrooms across the country.

Its subtitle captured the reason why: “A Family’s Triumph over Autism.” Triumph equals recovery—this was a recovery story. To be sure, Maurice took pains to put her family’s experience with ABA in a realistic perspective. She was careful to make clear that ABA was no cure and that recovery was not guaranteed. She portrayed ABA as costly, lengthy, exhausting, and, most important, unpredictable in its effects on any particular child. She was firm on that point: ABA was a gamble in terms of its outcome.

But to the readers of the book, Bridget Taylor and ABA couldn’t be a mere fluke—their techniques had resulted in two recoveries in one family. When
Let Me Hear Your Voice
hit the market, it was all autism families could talk about. Immediately, Maurice’s book jumped to the top of the list of books that autism parents had to read. It became
the book pediatricians recommended to parents on the day their child was diagnosed. It was a bestseller at autism conferences everywhere, making its author the great explainer of Lovaas ABA to the autism “masses.”

Lovaas himself even provided the book its afterword. Wrapped as it was inside a genuine love story, Maurice’s ABA memoir endowed Lovaas’s method with the extra layers of respectability it had always been lacking. Bernard Rimland, meanwhile, wrote the book’s foreword, where he praised the power and honesty of Maurice’s writing and made a prediction.

“Let
Me Hear Your Voice
,” he pronounced, “will send a powerful and long overdue message to parents and professionals alike.”

It was a prophecy fulfilled both immediately and enduringly, but at the cost of much strife and anguish.

24

FROM COURTROOM TO CLASSROOM

O
n June 19, 1996, Lilli Mayerson arrived at a branch office of the Westchester County Department of Health. The division for children with special needs was located on Bradhurst Avenue in the town of Hawthorne, New York. Gary, Lilli’s husband, was tied up in business meetings in Denver, but no one had wanted to risk postponing the appointment. Time suddenly mattered too much.

A few weeks earlier, Lilli’s son had been evaluated, at county expense, by a developmental psychologist who had recommended “
immediate and intense intervention” for autism. Hearing this, Lilli and Gary saw only one option. Every passing day cost their son his future. He needed ABA right away.

The county had assigned the Mayersons a case coordinator named SueAnn Galante, who would lead the session that day. The county, as mandated by law, would present a treatment plan for the year ahead, which required the parents’ signature. After pleasantries were exchanged and introductions made with other staffers consulted in her son’s case, they handed Lilli the paper on which Galante had sketched out what the county had come up with.

What she read stunned her.

She and Gary had been expecting, based on their own research into ABA, that the county would be offering upward of twenty-five, thirty, possibly forty hours of that therapy for their boy.

The numbers on the sheet didn’t even come close.

One and a half hours of speech therapy per month. Two hours
monthly of something called family therapy. Forty-five minutes of occupational therapy per week. And eight hours of ABA a week.

Lilli Mayerson refused to sign.

A few days later, Galante took a phone call from a livid Gary Mayerson. He called the department’s offer “
despicable” and told Galante that he was a lawyer, one who knew that parents all over the country were suing for ABA funding and winning. Mayerson’s message was clear: unless his son was offered at least twenty hours of ABA per week, the county would have a fight on its hands, with a motivated father who knew his way around a courtroom.

The era of ABA litigation had begun.

—

T
HE FEW YEARS
that followed Catherine Maurice’s book saw a profound shift in how parents approached the “experts” in their lives. Previously, most parents had shown deference to doctors, school principals, psychiatrists, and other professionals, not wanting to risk alienating these power-wielders whose support they needed to help their kids. It was one thing to be persistent and assertive, but being pushy and aggressive could backfire.

That changed in the 1990s, when autism parents acquired a new weapon: the law. The passage of the Individuals with Disabilities Education Act in 1990 had updated the fifteen-year-old Education for All Handicapped Children Act, which had mandated that public schools deliver an appropriate education for all children with disabilities who wanted it. The 1990 version, for the first time, named
autism
as a specific category of disability. This was pivotal. From then on, schools were required to offer programs specifically tailored to the needs of kids with autism. If parents did not agree with the offering, the law gave them the right to sue.