In a Different Key

by John Donvan

  Mary Ellen Nava, on the other hand, understood what Alec had been up against and why he had snapped. That’s how she saw it: her friend’s husband had, indeed, done a terrible thing, something that could never be justified. But she doubted he did it out of selfishness. Other autism parents, when they heard about the murder, reacted the same way. They were horrified by it, but at the same time, they recognized something familiar in the despair Alec surrendered to. At times, they too had felt chipped down almost to nothing by their inability to find a safe place for their kids—whether in a school now, or out in the world after they were gone. Nava was speaking for many of them when she tried to explain this world without options to readers of the Santa Barbara Press.

  “This…boy was home on a Monday afternoon,” she wrote, “because the doors of public education were closed to him. Why?

  “Probably,” she wrote, Alec looked at his son, “his own flesh and blood,” and asked, “what future does my boy have?” Then, to a world who still had little notion of autism, she appealed for understanding—not just of Alec, but of all of them: “Won’t you PLEASE help before our small group of children gets smaller? Ask—WHY?—WHO?—WHAT?—of your Special Education Department, your Mental Health Center, your doctor, wherever your voice will be heard. The next autistic baby could be yours.”

  —

  THOUGH FORGOTTEN OVER time, Dougie’s death did shake something loose in the edifice of official indifference that the Santa Barbara families had been facing. Mary Ellen Nava may have been the first to get the phone call, because she had written that letter to the editor, but soon, it was all the parents in her group. Within days of Alec’s trial starting, people in the state capital, officials from the California Department of Education, were asking to meet with them, the sooner the better, to discuss urgently the needs of Santa Barbara families dealing with autism. Soon a delegation from Sacramento had arrived in the city, shuttling from family to family in a small somber convoy of black cars, sitting down in living rooms and at kitchen tables, pulling out notepads to write down the answers to the questions they had brought. They had a lot of questions: about autism, about what these kids could learn, about what had already been tried, about what the parents would want to see if the school system committed to coming up with something better.

  The sudden spotlight on their struggles was startling for Mary Ellen and the others. They had no doubt that it was because of what had happened to their friends, the Gibsons. At the trial, Alec’s lawyer had laid out the long, dreary story of Dougie’s rejection by one school after another. It must have tweaked somebody’s conscience up in Sacramento, or embarrassed somebody in charge, because all of a sudden, instead of turning sprinklers on the parents, these state people were sipping coffee with them, leafing through their photo albums, and smiling appreciatively when it was pointed out how glowingly beautiful the kids had been as babies. The officials left vowing that something would be done in response to the absence of support that had driven Alec Gibson over the edge.

  It was not an empty promise. A year later, the Los Angeles Times could report: “Partly because of what happened,” the University of California at Santa Barbara and the County of Santa Barbara school system “are cooperating on a model program for autistic children financed by a $200,000 federal grant.” Overseen by a young UCLA-trained psychologist named Robert Koegel, who showed up with a willingness to experiment, it was a model that persisted, evolved, and expanded. Today the UCSB Koegel Autism Center dominates the West Coast of the United States in autism treatment, assessment, and research, and sees children by the thousands, from all around the world.

  In that first year, it took in twenty children, mostly Santa Barbara kids, Mary Ellen’s Eddie among them. The year after that, a Los Angeles TV station reported in a documentary that more than half of those children (not including Eddie) had progressed to where they were able to attend regular public school classes. “But for the tragic circumstances,” explained the documentary’s narrator—autism parent and Hollywood actor Lloyd Nolan—the program “probably would not have been.”

  It was the last time the Dougie story would be broached in public, and then the world moved on. But the wheels had been set in motion; the battle for education reform had begun.

  PART III

  THE END OF INSTITUTIONS

  1970s–1990s

  14

  “BEHIND THE WALLS OF THE WORLD’S INDIFFERENCE”

  In 1919, when five-year-old Archie Casto’s parents moved him into an institution in West Virginia, the number of words in his vocabulary matched his age. Fifty years later, as the 1970s were just starting to unfold, he was still inside institutional walls, living at Spencer State Hospital in Roane County, West Virginia. Change was overtaking the United States, upending traditional thinking about identity and power in so many areas of American life: race, religion, gender—and disability, where the ideas behind the practice of institutionalization were starting to be questioned.

  But this wave of change had not reached Spencer State yet, or Archie. He was middle-aged by then, and his parents were long gone. As no one had ever tried to teach Archie anything, or even talked to him much, language had abandoned him. His five words had dwindled to zero. He had never grown much past the height of a typical third-grader. Chronologically an adult, he had a small head, small hands and feet, and not a single tooth in his mouth. It was a known response by some state institutions to yank out the teeth of children who could not help biting—either other people or themselves. Archie might have gotten himself into that kind of trouble; compulsive self-biting sometimes goes together with severe autism.

  But in 1919, when Archie was first institutionalized, that diagnosis did not exist. By the time the label was invented midcentury, Archie was still locked away, in the prime of his life, and no one thought to reassess him to see if autism explained his behaviors. As far as the bureaucracy that controlled his life was concerned, he already had a label adequate for its purposes. He was a clinical “idiot”—although, by the 1970s, a more enlightened culture had switched to the shorthand “MR,” for “mentally retarded.” As far as the existing staff at Spencer knew, many of whom were not even born when he first entered the system, Archie had just always been there, one of the fixtures of the place—one among hundreds of residents who were there for life, many destined to be buried in the hospital’s own hillside cemetery.

  Through the first two-thirds of the twentieth century, the impulse to institutionalize dominated the response to real or apparent impairment of the faculties of intelligence. A broad range of conditions were represented by the people who were “put away” as children during these years. Epilepsy, cerebral palsy, and intellectual disability were among these. Autism too—once the diagnosis was coined—became grounds for commitment. This impulse arose from shame, and from the perception that such children were burdens that no decent hardworking family should be expected to shoulder at home. States stepped in with a taxpayer-funded solution: massive fenced-in compounds that herded huge numbers of such people together, out where they could not gum up the works of normal daily existence for everyone else.

  The states referred to these places as schools and hospitals, but in effect they became human warehouses. These institutions packed in hundreds of thousands of people across the country. The residents without an actual treatable mental illness became more or less lifetime detainees, because they never showed improvement and tended only to get worse. Nearly every state ran such institutions, and many had more than one.

  Without question, the institutions swept up many of the people who today would be diagnosed with autism, at least up into the 1970s. This happened to most of the first eleven children Kanner wrote about in 1943. When he tracked down ten of them nearly three decades later, he discovered that five had passed their entire lives up until then at state mental hospitals, and most of the others—excluding Donald Triplett and a boy named Henry, who lived on a farm—had also spent years in institutions, som
etimes several different ones, before other arrangements were finally found.

  Bernard Rimland, meanwhile, wrote that those who were not at home were passing their years “in empty hopelessness” inside institutions. A 1967 British study put a number on the hopelessness, reporting that three-fourths of the several dozen individuals with autism it tracked from adolescence into adulthood ended up that way. As late as 1982, another British study of a single “mental handicap hospital” found that 9 percent of the permanent residents under age thirty-five had classic autism, while many others showed autistic traits.

  This offers part of the answer to the oft-asked question: Where were all the people with autism before? For a good part of the twentieth century, they were institutionalized—if not kept hidden at home. Some were swept up into “training schools” for the mentally retarded on the assumption that they were feebleminded. Others went to a separate class of institution, the residential mental hospital, to be grouped with those said to be insane. At one time, many of these nineteenth-century institutions legitimately claimed for themselves the aspirational name of “asylum”—a place of refuge and protection. But that founding generosity of spirit withered over many decades under the pressures of overcrowding, limited budgets, and a growing despair that anything much could be done to treat, cure, or educate the clientele. Instead, institutions shifted to a custodial function, merely keeping watch over their charges, keeping them fed, but not necessarily occupied, and not always even clothed.

  The year after World War I ended, an institution became five-year-old Archie Casto’s whole world.

  —

  ARCHIBALD CASTO WAS born in Huntington, West Virginia, on February 17, 1913. He was Herman and Clara Louise Casto’s fourth child, and also, they could tell immediately, their healthiest, most robust baby. He was also particularly beautiful. A mischief-maker as soon as he could walk, he was in motion all the time, poking into everything, wandering off the moment no grown-up was watching him. As a toddler, he started putting himself into dangerous situations, running toward fires, into the path of trotting horses, out into thunderstorms. His mother’s voice had no effect—he’d neither slow down nor come back when she called out to him.

  By the age of three, when he still wasn’t speaking, it began to seem plausible that Archie might be deaf—a devastating thought to his parents, as it meant a childhood of special schools and limited horizons later on, in terms of the jobs he could get and the families whose daughters would agree to let him court them. It was not a diagnosis Clara wanted to hear, but she was exhausted from trying to keep up with Archie and needed guidance on what to do. Clara set an appointment with the family doctor sometime after Archie’s fifth birthday.

  When they returned from the appointment a few hours later, school was out, and their daughter Harriet was home. Harriet, who was thirteen years old, had never seen a look on anyone’s face like the one on her mother’s that afternoon. And she had never heard her mother cry so uncontrollably. Clara was shaking with grief, sobbing. Then Harriet learned why. The doctor had just pronounced Archie insane.

  The next few days were difficult in the Casto home. Harriet, not fully understanding what was happening, became frightened when her distraught mother confided in her that “some things are worse than death, and this is one of them.” Her parents made a somber, silent trip to the courthouse, and upon their return, Clara told Harriet that Archie would be leaving the family to go live in another part of town. Harriet had seen the place, which had opened some years earlier on the eastern edge of town. Originally known as the Home for Incurables, it was now the Huntington State Hospital. Surrounded by a high wire fence, with iron gates and a guardhouse controlling access, it resembled a prison, but it was officially designated an insane asylum by the state legislature. Commitment to the place required a judge’s approval, which explained the trip to the courthouse. The doctor had urged the Castos not to delay. The state agreed to commit Archie, a move that, in some of its practical implications, was like an adoption in reverse. Archie was broken off from the family, taken off his parents’ hands, and legally joined to the state. The Castos would follow the doctor’s advice—they would move on with their lives without a five-year-old insane boy in the family. The papers were signed, a bag was packed, and then Archie was gone, never to return again to a household that now had to figure out how to forget him.

  Harriet was given the new rules of the Casto household where they concerned Archie. She was never to mention him again to anyone beyond the family; she was to act as if she had no brother. Harriet was obedient. She learned to keep the secret.

  Once Archie stepped through the hospital gates, he ceased to have a history. There would be no letters home, and he would make no friends to tell stories about his childhood later. No one would ever take his picture. The local school district never even opened a file in his name.

  The thin evidence of his continuing presence under the institution’s roof appeared only once every ten years, when a federal census taker appeared at the hospital gate, and Archie’s name and age were recorded by law. The 1920 census tables listed seven-year-old Archie as the youngest resident in a sex-segregated ward where nearly all the others were men in middle or old age. Now and then, at intervals spaced years apart, the local courts checked in on him, requiring that he be brought in for a personal appearance before a judge. These several minutes per decade were the only time an outside authority checked in on his well-being. One year, he was brought in wearing a woman’s coat, as if that were the easiest thing to grab for whoever escorted him that day.

  At Huntington, each resident’s universe amounted mostly to the same two or three ward rooms: an area for sleeping, another for eating, another perhaps for pacing from corner to corner, behind windows screened with wire mesh. Archie shared these spaces, at all times, with dozens of other people. The doors, of course, were always latched—from the outside. These three rooms would be their universe, forever.

  —

  PARENTS WHO SENT their children to institutions, who were usually following doctors’ orders, could only pray that the place chosen was not one of the “snake pits.” With sickening regularity, stories of the extreme neglect and outright abuse at many of these institutions broke out into daylight. Yet the outrage and indignation these stories stirred up almost always, with the same regularity, faded away fast, with little or nothing done to improve conditions. It was a scandal when the New York Times reported that attendants at the Western Pennsylvania Hospital for the Insane were “kicking and beating patients until they were unconscious,” denying them food, and controlling them by squeezing wet towels around their necks, “pulling at it until the breath is choked out of the victim and he sinks to the floor.” The dateline on this particular story was March 30, 1890. It was a scandal again, thirteen years later, when the papers in Los Angeles gave coverage to nurses blowing the whistle on abusive practices at the Patton Institution, a mental hospital where women patients were allegedly disciplined for transgressions as minor as making faces or talking back to the staff by being tied under a heavy canvas sheet for up to three weeks at a time. Some, it was also alleged, were given injections of a compound that induced severe cramps and vomiting.

  Another four decades after that, the nation was shocked anew when conscientious objectors, who had been forced to work in mental hospitals in lieu of fighting in World War II, came forward with photographic evidence of the wide range of atrocities they had witnessed inside the institutions. They saw men chained to beds, residents sitting naked in rows in their own excrement, and the use of beatings to keep order or simply to let off steam. They also reported that the wet-towel chokehold was still in use, half a century later. Some of the pictures became the subject of a 1946 photo essay in LIFE magazine, with accompanying text by Albert Maisel. Titled “Bedlam,” Maisel’s essay raged against these “relics of the dark ages…concentration camps that masquerade as hospitals.” He lifted direct quotes from the conscientious objectors’ eyewi
tness reports that painted scene after horrifying scene. This one took place in New York State:

  These four attendants slapped patients in the face as hard as they could, pummeled them in their ribs with fists, some being knocked to the floor and kicked. One 230-pound bully had the habit of bumping patients on the back of the head with the heel of his hand—and on one occasion had the patient put his hands on a chair, then [struck] his fingers with a heavy passkey.

  Maisel took care to point out that not every asylum in America deserved his “concentration camp” label, though he insisted that most were implicated. He also thought that the true bullies on staff were probably few in number, but that cruelty was inherent in the conditions that both residents and staff had to share together. “We jam-pack men, women and sometimes even children into hundred-year-old firetraps in wards so crowded that the floors cannot be seen between the rickety cots, while thousands more sleep on ticks, on blankets or on the bare floors.” Maisel reported that the decision to tie up patients or put them in solitary confinement was unwisely left up to badly trained and completely outnumbered staff members, who used last-resort methods too early and too often.

  Each time stories like this emerged, it was as if the people on the outside were hearing it for the first time. After the 1946 LIFE report, the needle twitched slightly on the meter of public outrage. Congress called hearings, and Maisel testified. Hollywood made a movie called The Snake Pit, which was nominated for nine Oscars, about a woman confined to a state mental hospital and the indignities she suffers there. In 1948, Time put The Snake Pit on its cover. “The large, hidden population of the mentally ill lives amid squalor, dirt and creeping fear,” Time roared, “behind the walls of the world’s indifference.”