In a Different Key: The Story of Autism (29 page)

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, visiting 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

B
efore 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 was 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.

When Dr. Freedman and his two coauthors published the findings in 1962, he sounded a defeated note. He believed the research had value as a first-time description of children with autism subjected to the LSD experience. But after filling ten pages with text, charts, and tables, he was forced to report, in the last sentence of the final paragraph:
“The hoped-for change from muteness to speech did not occur.” Freedman was done with LSD research, at least as the answer to autism.

Others, however, were just getting started. One leading New York psychiatrist, Dr. Lauretta Bender of Bellevue Hospital, became convinced that daily dosing with LSD was the way to go. In 1961, she chose as her subjects fourteen boys and girls, ages six to fifteen, most with
symptoms that today would fit neatly into the definition of autism. The children were not volunteers; they were confined at the Creedmore State Hospital in Queens, New York, when she began injecting them with minuscule amounts of LSD—25 milligrams per week. Bender described herself and her team as “extremely cautious when first using the drug,
even obtaining parents’ consent.”

Over the next four years, she added more children to the study and worked up to more LSD, more often—eventually reaching a whopping dose of 150 milligrams, administered orally in half doses, twice daily. Some children remained on that regimen for up to twenty-four months. This yielded for Bender years of publishing opportunities; she became the most prolific article writer among all the researchers mixing LSD with autism. By 1969,
having experimented on a total of eighty-nine children, she had produced eight key articles, far more than anyone else doing experiments with kids.

Similar work was taking place at UCLA and around the country, led by both psychiatrists and psychologists, all of whom relied
on captive populations of children confined to institutions. Some researchers seemed motivated more by curiosity about LSD than by an interest in autism.

The science produced from these experiments was as murky as their ethics, as most of the trials failed to meet even the basics of procedural soundness. There were almost no control groups, no objective metrics, and the researchers relied heavily on their own subjective and biased observations. In short, they wanted to see happier children, so that’s what they looked for. Thus, in 1967, when Dr. Harold Abramson, an asthma doctor and leading LSD enthusiast, pulled together the results of most of the studies, he declared with confidence in
The Journal of Asthma Research
that LSD represented
“new hope…especially to autistic and schizophrenic children.”

But as the 1960s came to an end, the zeal for LSD as an autism treatment was fading. For one thing, it had become much harder to obtain. Sandoz, the Swiss manufacturer, had shut down production in 1965. And in 1968, with recreational use spreading, the US government outlawed possession of LSD except under limited circumstances. The National Institutes of Mental Health kept a supply for research purposes, but getting access to it was a laborious process.