In a Different Key

by John Donvan

  Soon after the bill signing, the Lapins dropped their lawsuit. The new law Reagan had just signed off on, which had been pushed through by parents, meant that Shawn and other kids like him in California would finally be going to public school.

  —

  ONE LATE SEPTEMBER afternoon in 1975, at the end of Shawn’s first full day in public school under the new law, Connie strolled out to the end of the driveway to meet the school bus. But the child who clambered down the bus stairs, holding the hand of an adult aide, was a boy Connie had never seen before.

  “This isn’t my son,” Connie said to the aide, scanning the bus windows for Shawn’s face.

  “Yes, this is Shawn,” said the aide, smiling down at the boy, offering his hand out for Connie to take.

  “No, this isn’t Shawn,” said Connie, looking hard at the aide.

  “Yes, it is,” hollered a voice from inside the bus. It was the driver. He was peering at the clipboard in his hand.

  “Seriously,” Connie hollered back, “I know my own child. This is not my son!”

  “Seriously?” the aide asked.

  “Yes, seriously!”

  It was quickly established that at one of the preceding stops, Shawn had been handed off to some other family—who, inexplicably, had taken him in—while the boy who lived at that house had been delivered to Connie.

  As the bus sped back to the earlier stop, Connie called Harvey, and told him what was going on.

  “The driver kept insisting this kid off the bus was Shawn,” she told Harvey on the phone, starting to laugh. “So I finally said to both of them: ‘Okay, you know what? Fine. I’ll take this kid—but somewhere else out there, there’s a family that’s in for a really bad night.’ ”

  Harvey laughed.

  “Okay,” he said. “But I just need to know—this new kid—he could talk, right?”

  “Yup, this one talked, and he was pretty cute too,” Connie said.

  “Great,” Harvey said. “Let’s keep him.”

  The next day, things went more smoothly. The following morning, Shawn went off to public school for the second day. The boy who got four photos in Newsweek would not be “sent away.” Because the world had changed—to make room for him in it—just in time.

  17

  SEEING THE OCEAN FOR THE FIRST TIME

  Archie Casto was sixty years old when Shawn Lapin started public school. At that point, Archie was still in residence at Spencer State Hospital, in Roane County, West Virginia. He would spend another fourteen years there. Then, finally, one day in 1988, he got out.

  The population of America’s institutions began to plunge in the 1970s, but not because older residents were getting out in large numbers. Rather, it was the relative cessation in the flow of children and younger people entering in the first place. In 1965, people under twenty-one made up 48.9 percent of the nation’s institutionalized population, which was the peak for that age group. By 1977, that number had dropped to 35.8 percent, and in 1987, it was down to 12.7 percent.

  In great measure, this trend resulted from the laws that gave kids somewhere else to go all day, namely school. The 1975 federal Education for All Handicapped Children Act, which was later renamed the Individuals with Disabilities Education Act (IDEA), delivered a new mandate to any public school that accepted federal funds. If they wanted to keep getting that money, they would have to provide equal access to education to any child with physical or mental disabilities. There was a list of which disabilities qualified. After 1990, autism was on it.

  In 1972, Tom Gilhool had accepted a three-year position teaching law school at the University of Southern California. While there, he began work on another landmark lawsuit, Halderman v. Pennhurst State School. This time, he made the institution’s record of abuse and neglect the core issue. The case resulted in the state of Pennsylvania agreeing in 1977 to offer services to the mentally disabled in community settings, near where they lived, rather than in some large compound out in the country. It was the beginning of the end for Pennhurst. The institution saw its population implode, as admissions of children and teenagers came to a virtual halt.

  For older residents, however, including all the “lifers” like Archie Casto, deinstitutionalization would crawl forward in fits and starts, unevenly, and against some resistance, across the country. Part of the problem was the lack of better alternative arrangements for adults. “Better” was now being redefined, mostly, to mean small “group homes” inside real neighborhoods, where the residents were “clients.” In these settings, ideally, they could live much more “normal” lives. Size was critical to the vision. Group homes needed to be scaled to human proportions.

  Nationally, thousands upon thousands of these establishments would be needed, but few existed in the 1970s. This lack of somewhere else for their residents to go, which took roughly a quarter of a century to resolve, was a key reason that the big institutions, though mortally wounded, took so long to disappear. A good many residents died of old age waiting to leave; others only grew older, logging more years in a system whose end was now in sight.

  —

  RUTH SULLIVAN, WHO had helped start NSAC when she lived in upstate New York, had moved in 1969 to Huntington, West Virginia, where her husband had joined the faculty of Marshall University. In late 1979, she began a full-time autism information and referral service from her home, serving families around the country by phone, by mail, and now by fax machine. More and more, she was hearing from parents whose children were reaching their adult years—like her son Joe, who was in his twenties now, still living under the same roof as his mother and father. Like Ruth, the parents of these rising adults had recently been looking beyond the school issue, to the day when their children, too old for school, might be living at some different address.

  Ruth decided to build a solution that would protect her own son. In her fifties, at the same time that she began pursuing a doctorate degree in psychology, speech, and special education, she set out to create the first group homes for adults with autism in the state of West Virginia. Between driving several times a week to take courses at Ohio University, she founded a new organization—the Autism Services Center—to handle the purchase of properties and offer support to adults, with herself as executive director. The organization put its first home into operation in 1979. Some years later, Joe moved into one of the ASC residences.

  One day in 1988, Ruth was contacted by a local woman with an unusual request. The woman, who was in her late eighties, explained that she had recently been looking through a popular magazine and had come across an article written by Ruth, which talked about autism. She said Ruth’s description of autistic traits reminded her of her brother. Though her brother had never been given an autism diagnosis, the woman had begun to think it might fit. She asked whether Ruth would be willing to meet her brother, to confirm her hunch. But Ruth would have to drive over to Roane County to pay a visit to Spencer State Hospital, where the man had been living since the early 1950s.

  Harriet Casto had finally, well into middle age, reconnected with her little brother Archie—by learning to drive. She did not like being behind the wheel, but she had forced herself to get a license so that she could get to his faraway institution. It wasn’t until she was in her fifties that she finally rebelled against the shame and embarrassment about Archie that she had nursed for so many years, and now regretted. She wanted to make up for those years by trying to build a new relationship with her aging brother.

  Still, once she figured out the route and started visiting the state hospital regularly, it wasn’t easy. Harriet found it painful at times to see him, doomed to the confines of Spencer State. And Archie, who did not speak, did not make it any easier. Harriet wanted to believe that her visits mattered to him, but at the end of each, when she bent down to hug her brother goodbye, and brought her cheek close to his, he remained frozen, that old hard look in his eyes, seemingly unmoved by his big sister’s affection.

  But Harriet persisted, v
isiting month after month, and year after year. And, ever so slowly, Archie began to pay attention when his sister was there. One day, a ward nurse told Harriet that whenever their visits ended and Harriet left the building, Archie would run to the window and watch her climb into her car, staring after it as it drove away. When Harriet heard that, she cried.

  On subsequent visits, Harriet began to believe that, wordless or not, Archie had started to understand that the two of them belonged to each other. She was given permission to take him out for car rides around the nearby countryside. Later, the rides grew longer, so that she could bring him home to her house for dinner, and then back again to Spencer before lights-out. In the course of these later visits, she had already begun to question the long-standing assessment of Archie’s supposed rock-bottom intelligence.

  For example, whenever they set out on their road trips, he always picked out her blue car instantly from the fifty or so that might be parked in the institution’s lot. Their first few times out, she had needed to walk him through the steps of putting on a seat belt, but after that, he did it automatically. One time, when the two of them arrived at her house, she asked him to help unload some tomato plants she’d picked up that day, and to leave them in the garage while she stepped into the main house to take care of something else. When it suddenly occurred to her that he probably had no idea what the word “garage” meant, she rushed outside. But she saw that he had carried all the plants in from the car and lined them up in even rows on the cement floor. On yet another occasion, she saw Archie, unprompted, wander into her front yard, pick up some odd pieces of litter that had strayed across it, and carry them out to the trash. Obviously, there was more of a mind behind Archie’s stolid silence than he had ever been given credit for.

  He continued, when she went to hug him, to freeze. He still didn’t like to be touched. And yet, as brother and sister, they were concocting their own unique version of friendship. For a flickering instant, when he spotted her at the start of each of their visits, Harriet could see the dead look on his face lift away—replaced, momentarily, by the briefest smile. Gone again in a blink, it was never much, but for Harriet it was enough.

  The day she and Ruth Sullivan drove out together to Spencer State, it took almost no time for Ruth to see that Harriet was right. Archie’s autism was indisputable. Ruth was sure of it, and her opinion mattered. Her stature now, since she had completed her PhD and become Dr. Sullivan, was such that her verdict on Archie’s diagnosis faced no challenge from the authorities at Spencer State.

  But it was a different reaction when she and Harriet set about trying to get Archie transferred out of Spencer and into one of the group homes Ruth’s organization was just then getting ready to open. Spencer’s superintendent put up a fight, insisting that, precisely because Archie had spent his entire life within the bosom of the state hospital system, he would be lost anywhere else. It would be overwhelming for Archie, the superintendent argued. It would kill him.

  As it turned out, it didn’t. At the age of seventy-four, thanks to the persistence of his sister and the reputation of Ruth Sullivan, Archie was granted leave to move to a house in Huntington, West Virginia, where, instead of sharing an address with three thousand people, he would be living with five. For the first time since 1919, he had a room to himself. Rather than die as predicted, it was as though he embarked on the childhood he had missed at the century’s start. A teddy bear became his first toy in seventy years. He clung to it constantly. He learned to ride a tricycle. He jumped up and down on his bed with such a passion that the staff immediately set to work to discourage it, because they were afraid he would hit his head on the ceiling and get hurt. He was in his seventies, after all. Their success at this was limited.

  For the next several years, Archie continued to grow within the community the Autism Services Center had provided. He learned, as an old man, to dress himself, to bathe himself, and to keep his room in order—all skills he was missing when he left Spencer State. He began to paint and to color. Once, a kind handyman taught him how to hammer nails into boards, and this became one of his favorite activities. In 1995, he was taken, with everyone else in the house, to the Outer Banks of North Carolina. He was eighty-one, seeing the ocean for the first time.

  And he finally learned to accept his sister’s touch. A frequent visitor to his new home, Harriet had watched the hard-faced Archie turn into a man who smiled all the time. She saw too how he sometimes pulled himself up close to the staff members’ faces, fascinated by their teeth, which of course he lacked. He would tap on their incisors with his fingers, then brush his palms over their cheeks. One day, as Harriet leaned over him to say goodbye, he did the same thing to her. He brought his hand up and touched her cheek. Then she touched his. After that, this became the way they always said goodbye to each other.

  Harriet died a few weeks after turning ninety. That was in 1993. By chance, that was the year the institution that had held her brother for half his life, Spencer State Hospital, saw its last patients leave. After that, an auction was held, in which everything inside the place was put up for sale and carried off, including furniture, kitchen utensils, trees from the lawns, and patient X-rays. The buildings, used for a time by a rubber company, went under the wrecking ball some years later. Since 2000, the site has been home to a Walmart superstore.

  Archie lived in the group home until his death at age eighty-three, in 1997. At the time, someone referred to him as being the oldest-known person with autism. More than one hundred people attended his funeral, and the house he lived in was named for him posthumously: Casto House.

  Rescued near the end, Archie managed to get in nine years of an excellent life, and he got to leave his mark, in the house that still has his name, with cracks in the ceiling above his old bed.

  PART IV

  BEHAVIOR, ANALYZED

  1950s–1990s

  18

  THE BEHAVIORIST

  Before it fell from grace with the authorities—back when no one called it “acid,” when possessing it was not yet a crime, and its short, mad era of being chic was still in front of it—LSD actually enjoyed a good long run of respectability.

  Lysergic acid diethylamide, which was derived from a fungus, was first developed in 1938, but its mind-altering properties were unknown until 1943, when a Swiss chemist named Albert Hoffman got high on it completely by accident. Hoffman had developed the compound known as LSD-25 five years earlier as a possible respiratory stimulant for the pharmaceutical firm Sandoz. For the next few years, he kept busy with other projects, but on April 16, 1943, he synthesized it again to take another look. Suddenly, he began to feel strangely restless and dizzy. Unsettled, he went home, where he lay down on the bed and shut his eyes against the daylight, which suddenly seemed irritatingly bright. For the next two hours, he was dazzled by visions of extraordinary shapes and colors dancing before his covered eyes—a stunning imaginary show that seemed utterly real. And then it ended.

  That night, thinking it over, Hoffman hypothesized that he had somehow ingested the compound he’d been working on, perhaps through the skin of his fingertips, and that this had caused the reaction. Three days later, to test this theory, he put another 250 milligrams of LSD-25 into his body—this time swallowing it. Then he went for a bike ride. The era of LSD experimentation had begun.

  For the next fifteen to twenty years, it was not ordinary people testing out the drug. It was scientists. “A favorite tool of psychiatric research,” Time magazine said of LSD in 1955. In total, some 10,000 research papers would be produced on LSD by the early 1960s, the majority of them studying its effects on human subjects—who “dropped acid” under laboratory conditions, then let their reactions be measured. Researchers were captivated by the similarity of some of LSD’s effects—most obviously, hallucinations—to major symptoms of mental illness. They were excited at the possibility of using LSD to study the impact of brain chemistry on mood, cognition, and mental health in general.

  It w
as in this spirit that, in 1959, a New York psychiatrist stirred a little LSD into the chocolate milk of an eight-year-old nonspeaking boy with autism in hopes of getting him to talk. Inspired by recent breakthroughs reported among adults, Dr. Alfred Freedman had gone to the League School in Brooklyn—a pioneer in autism education—and arranged for twelve students to take part. Five spoke mostly incomprehensibly and seven not at all.

  At the time, LSD’s power to crack the silence of the silent had already been well documented. There was the “catatonic woman who had been mute for some years,” who, according to one write-up, began to speak again when given LSD. There was also a sixty-year-old man, identified only as Mr. G., who “responded with wild bursts of laughter, which was most unusual for him since Mr. G. never spoke.” Neither of these adults had autism, but the reported vocalization effect made LSD seem worth trying on children with autism.

  And so, beginning with “slender, delicate-looking” Ralph, the twelve children dropped acid, one by one, each on a different day. The LSD was administered in cups of whatever they liked best to drink. Then Freedman and two other researchers watched, waited, and wrote down what happened next.

  Ralph had the classic response of someone on an LSD trip. His eyes dilated, his skin flushed, and he began acting weirdly, at least for him. He was briefly observed making eye contact with one of the adults nearby, which was unusual, but then his eyes started following something no one else in the room could see. He was hallucinating. He was definitely more perked-up than usual, even elated, until, after an hour or so, his mood turned dark, and he lost interest in everything around him, including objects placed directly in front of him. For a long time, he sat practically motionless, stroking his lips over and over, as though only just discovering them. At the four-hour mark, his alertness began to return; at five hours, he was extremely irritable until given another cup of chocolate milk. After that, “he rocked on his cot, somewhat depressed, but relaxed,” while the last vestiges of his high evaporated. Observations of the remaining children showed a wide range of responses, but none of them magically began to speak.