In a Different Key: The Story of Autism (35 page)

Schopler and Reichler got lucky. Soon after they were assigned to the Psychotic Child Group, funding for the program expired and was not renewed. But parents kept calling UNC. One of these calls, which came in the second half of 1965, was passed through to Schopler. Like Reichler, he was looking for something to do, and so, a few days later, the two of them met
a mother named Mardy, who had a three-year-old who had been diagnosed with autism.

Mardy’s son, David, was on a drug called Stelazine, which had been prescribed by the last psychiatrist they had consulted. Reichler felt like he was meeting a zombie. But without the Stelazine, Mardy explained, David was uncontrollable. He was a screamer and a runner and a head banger. He could say only one thing—
ka-ga-ka
—which he repeated ceaselessly. Mardy confided her belief that Stelazine was the only thing keeping her son out of an institution. But she also hated seeing what the drug turned her son into—he was constantly in a trance, lifeless and lost. She wanted him off of it.

Reichler, as the MD, stopped the Stelazine immediately, and he and Schopler set a date to begin working with the boy in the space abandoned by the discontinued study. Off the drug, David quickly returned to his wild self. On the first day, he filled the room with the strange, blunt sound of his sobbing, and kept breaking for the corridor. Reichler, not knowing what else to do, scooped him up, caging him loosely with his arms, and dropped to a seated position on the floor. He was improvising, trying to keep David in one place long enough to get and hold his attention, while he danced anything within reach in front of the boy’s eyes—a toy car, blocks, his own eyeglasses. He was also watching closely. When he saw David’s glance lock even briefly onto whatever he was holding, Reichler gave out a cheer and a hug, then tried to get David to do it again.

Schopler stood behind the one-way mirror, noting everything that was happening. The next several sessions were much like the first: Reichler fumbled for a connection, and David, fleetingly, showed that he might be making one. At night, the two men sat up for hours,
discussing how to enhance this intensive one-on-one interaction. Eventually, they discovered that David had a sweet tooth, and they began using this to reinforce any sort of imitative behavior he demonstrated. Every time he stacked two blocks into a tower, Reichler placed a piece of candy on his tongue. When Reichler started asking him to name things—and make sounds other than his
ka-ga-ka
sound—they rewarded him again. David began to grasp this and soon was also naming objects appearing in pictures: dog, boy, tree, house. Unaware of it, Reichler, by instinct, was practicing a sort of behavior analysis.

Six months into it, they began to record the sessions on videotape. From then on, when the camera was on, Reichler had to work at keeping David within the frame. By this point, David appeared to like playing the games this grown-up doctor kept coming up with. In one videotaped session, Reichler, puffing on a thin cigar, crawled around on the floor pushing a toy car, making a low
vrooooom
sound. It was yet another small breakthrough when David did the same thing.

On another day, when David pointed directly at Reichler’s cigar, Reichler treated the gesture like a question. “Yes,” he said quickly, “that’s my cigar,” and took it out of his mouth to let David take a closer look. David, pointing again, echoed Reichler’s last spoken syllable, posing it like a question:
“Gaaarr?”
This was new: David was inquiring. Reichler jumped on the moment. He took a hard drag on the cigar, and as they sat there cross-legged on the floor, face-to-face, he started letting out small puffs into the air between them.

David was entranced, watching the smoke curl in front of his eyes. When the wisps had melted away to nothing, a smile began to play on his face. Then, ever so quietly, he giggled.

“Give me your hands,” Reichler commanded. Now this boy, who had rarely heeded the human voice, stuck his arms out. Reichler used his own big hands to guide David’s fingers into the shape of a bowl. Bending over, he put his face down into the bowl and filled it with another, puffier cloud of smoke. David, surprised, snapped upright, snatched his hands back, and then broke out laughing. It had happened. For those few minutes in that small room, the boy with autism was locked onto his grown-up playmate, enjoying being engaged with a person.

Schopler and Reichler saw that David responded best when some sort of structure was imposed on the sessions, when it was clear that activities were for set amounts of time and in a set order. They also saw how useful it was to pay close attention to what interested David himself, as Reichler had done during the smoke game. It was obvious that David worked better with visual stimuli, as opposed to information communicated verbally. They began using picture cards increasingly as a language-building tool. Within six months, David went from having zero words to having a vocabulary of about 1,000 words.

One morning, when Mardy dropped David off for another session and asked Schopler if she could join him behind the one-way mirror, he saw no reason to refuse. That decision would be momentous.

Mardy, another mother drained by the strain of raising a child with autism, nevertheless began staying for every session. She took careful note of what Reichler was doing with David in the lab and began repeating it with him at home. More than that, she began to innovate, trying a new game, adding new pictures and words, or creating some sort of puzzle. Schopler encouraged this heartily. Without question, her direct involvement, and her constant reinforcement of the lab work, was magnifying its beneficial effects on David.

Those effects were profound. After two and a half years, David had become a five-year-old boy who could talk, relate to people, and take care of himself at an age-appropriate level. Most remarkably, he soon started attending a regular kindergarten. As far as Mardy was concerned, the two men at UNC had given her son a chance at a life that would have been impossible had he stayed on Stelazine or been put away in an institution.

David gave something to Schopler and Reichler too. In 1967, they turned the
videotapes of his sessions into a twenty-four-minute-long film and applied for a grant from the National Institute of Mental Health (NIMH) to continue finding ways to help children with autism learn. Covering twenty months in David’s life, the film concluded dramatically with David leading a group of kids at his regular kindergarten through a game of Simon Says. The grant came through, and the NIMH agreed to fund a five-year pilot study, based at UNC and overseen by Schopler.

The money gave Schopler the chance to hire a tiny staff and set up shop in a construction trailer—number 18—parked outside UNC’s medical school, whose interior was cut up into cramped offices and compressed lab spaces. It was far from well appointed, but it did, at least, have electricity and a telephone.

The modest scale of the program’s resources was counterbalanced by a decision Schopler made early and stuck to faithfully ever after: to recognize parents as a critical part of the therapeutic team. In some ways, it foreshadowed Ivar Lovaas’s recognition that teaching parents to perform ABA multiplied that therapy’s benefits, while helping to contain its dollar cost. But Schopler’s commitment to parents ran deeper than seeing them as inexpensive and trainable adjuncts. Schopler called parents co-therapists, and he argued that professionals had as much to learn from them as the other way around. At autism conferences, he was the one professional known to be the most approachable, the one who, at the end of a long day of presentations and testimonials, would stay up late to talk with the mothers and fathers.

His commitment to involving parents would remain a mainstay of his work. In a 1971 article he published in the
Journal of Contemporary Psychotherapy
, called “Parents of Psychotic Children as Scapegoats,” he publicly informed his colleagues that, in his program, parents “have been effectively engaged as co-therapists in the successful socialization of their child.” The same year, in the first-ever issue of the
Journal of Autism and Childhood Schizophrenia
, he and Reichler wrote, “It is time to recognize the autistic child’s parent as the integral agent to the solution of his child’s problems rather
than as having caused them.”

This early and public stance on the side of parents, by a professional who was not an autism parent himself, established Schopler almost as the “anti-Bettelheim.” In return, Schopler enjoyed a degree of trust and affection from the parents that became ballast for his reputation in the field. Parents would do anything to support Schopler in his work, which became especially important when his program, at one point, faced extinction. Two mothers in particular proved to be highly motivated and effective frontrunners in the efforts to save his program: Betty Camp and Mary Lou “Bobo” Warren.
Betty was a special-education teacher married to a college dean. At a time when African American
children were only rarely given an autism diagnosis—they were often labeled mentally retarded instead—their son, Norman V. Camp IV, or “Normie,” was an exception. Like Connie Lapin out west, Betty had expended a great of deal of effort cajoling schools to take Normie, only to be told, after he had been enrolled a short while, that he was not welcome back. Normie, who had been unable to talk since the age of two and had a great deal of trouble staying focused on a task or sitting still at a desk, was not a true troublemaker. Though tall for his age, he was gentle, and usually calm and compliant. Betty was certain that he was capable of learning, so she pressed hard to get him into Schopler’s program at UNC, where he was accepted in 1968.

Mary Lou Warren’s son George, likewise, had no language. But unlike Normie, George was always getting into trouble, because he was a runner and a climber. Mary Lou, known to all by her childhood nickname “Bobo,” was
one of those mothers who lived in a state of constant sleep deprivation, and who had been treated badly in her experiences with the psychiatric profession. One of her most vivid memories of George’s early years took place on Easter Sunday, 1965, when she and her invited guests—her husband’s parents and other family—retired after dessert to the garden to watch her two other children, Duncan and MacCrae, hunt for eggs. It was a rare moment of family relaxation, of feeling “normal.” Suddenly, her mother-in-law screamed and pointed up at the second story of the house. George, then three, was teetering high above the ground atop the narrow railing that enclosed an upstairs porch. With everyone watching in terror from below, he blithely jumped back onto the porch, just as his father arrived, breathless from running upstairs to rescue him.

Her other most vivid memory concerned the doctor at a major North Carolina teaching hospital who, on March 24, 1967—a date she could never forget—told her that
George had “a very severe, atypical emotional disorder.” He tersely explained that whatever the boy had, it was untreatable. Then he excused himself to go keep another appointment. On his way out, he told Bobo that she should send George away and “try to forget about him.”

Bobo got George an appointment in Schopler’s Trailer 18 in 1968, around the same time that Betty Camp took Normie there. George
had recently begun hurting himself, and Bobo had no idea how to stop it. But the local paper had just run a story about autism, and she saw that the symptoms closely matched George’s. The same article mentioned Schopler and his program at UNC, so she had called immediately. She was not sure what to make of Schopler when she met him and noted the caked-on mud on his boots.
Seriously? This guy is a psychologist?

Still learning and improvising themselves, Schopler and Reichler gave Betty and Bobo detailed instructions on how to work on their own with their boys. Her first week, for example, Betty went home with half a page of typewritten instructions for repeating some of the sorting and shape-discrimination activities she had seen at Trailer 18. The instructions also called for her to design her own activities based on what she thought would work best for her son. The guidelines here were deliberately vague. “Aim for enjoyment for yourself as well as his,” they said, “and keep it simple, structured and consistent once you get something that seems to be working.”

Normie and George did not have the same results as David, Mardy’s son who starred in Schopler and Reichler’s movie. Though both remained at UNC for several years, they did not learn to speak or become functionally independent as adults. But both mothers considered the boys’ time at UNC to have been the turning point in their children’s lives, the place where both boys learned how to connect to others, a skill they might never have learned otherwise. Never much fixated on “curing” autism, Schopler believed that such hard-earned achievements were, in and of themselves, reason to celebrate.

Betty and Bobo certainly thought so. Ever grateful to Schopler and Reichler, they were quick to return the favor when the UNC program needed to be rescued too.

—

T
HE
NIMH
HAD
agreed in 1966 to fund the Child Research Project for only five years, on the principle that if the work proved itself worthy, some other funder would surface. In early 1970, at their regular monthly meeting with all the parents, Schopler and Reichler
mentioned in passing that no other funder had yet been found, which put the program less than a year away from vanishing.

Normally, these meetings were about the therapy, what was working for different kids and what was not. But that night, Bobo Warren stood up and took the meeting in a different direction. The group, she insisted, had to figure out a way to keep the program going and growing. Heads nodded. Someone made a comment that they should launch a campaign to get the state of North Carolina to pay, which brought about a boisterous round of applause. The goal was set.

Over the next several months, in Trailer 18, the psychologist and the psychiatrist worked at drafting a law—a task for which neither Schopler nor Reichler had any prior experience. A friend of Bobo Warren’s journalist husband, Frank, Senator Charles Larkins, had agreed to sponsor a bill on the parents’ behalf, but only if Schopler and Reichler wrote most of it.