In a Different Key: The Story of Autism (23 page)

What went through the mind of this man?

Mary Ellen phrased her response carefully. Velna had told her that Alec had convinced himself that killing Dougie was the only way to spare him. One of the police officers who made the arrest had quickly formed the same impression. After sizing up the situation at the house and taking Alec’s statement, he told a reporter that the suspect had intended a
“mercy killing.”

At the trial, a sympathetic psychiatrist corroborated this account of the defendant’s thought process, noting that it fed darkly on the strangling depression that had seized on Alec as his own health problems
worsened. Alec had become certain his heart would soon fail for good, and he had become obsessed with thoughts of the cruelty the world would visit upon his son when he was no longer there to protect him, as well as with the burden that would shift fully onto Velna. The harsh indifference of the schools toward Dougie already served to confirm these fears, but it was an incident some weeks before the shooting that may have triggered Alec’s final lunge toward despair.

It was the day Dougie, who had just turned thirteen, had suddenly dropped his pants and begun playing with his genitals, out in the open, in front of a group of children in their own backyard. It caused a momentary uproar among the kids, who reported it immediately to their mother, a friend of the Gibsons named Aggie. If anyone in the Gibsons’ world was capable of avoiding an all-out panic over this turn of events, it was Aggie. She was one of the few mothers around who was not put off by seeing Dougie walk up her front path with his parents. When the Gibsons came over, her kids always included Dougie in their games, because Aggie encouraged it. Perhaps she didn’t know much about autism, but she knew enough never to hold Alec or Velna at fault when Dougie did something that crossed the boundaries of what was considered socially acceptable.

When he started masturbating in the sunlight that day, Alec was on Dougie in an instant, jerking his pants back up to his waist, embarrassed for him, scolding him, while making apologies to Aggie, who in fact didn’t require any. She understood: Dougie, just entering puberty, was only doing what came naturally.
Coolacoolacoola
. That was all this tall, handsome young man had to say for himself, then and always. It was hard to imagine his indiscretion was a deliberate attempt to create a scandal by the sandbox—not when these physical feelings were so new to him, and “the rules” about them so far past his comprehension.

Someone like Aggie could forgive and forget the awkward episode. But Alec couldn’t let it go. It began to haunt him—the realization that sex represented a thousand new ways Dougie could find himself dangerously out of sync with the world. More of this kind of thing, and his boy could easily be branded something he wasn’t: a deviant, a threat. People like that get arrested or beaten to death.
And he was only thirteen
. Adolescence still stretched in front of Dougie, followed by
manhood. The social complexities he would need to negotiate seemed overwhelming. Alec could not conceive of Dougie ever being able to learn to observe the boundaries set by concepts like privacy or modesty. Instead, he foresaw the thicket of autism, sex, and etiquette as a wilderness that would swallow his son whole. It would only get worse, he had to assume, as Dougie got older, bolder, and stronger. The world was cruel. He was convinced of that.

Alec killed Dougie to put him out of a misery he believed to be inevitable, following a distorted logic he developed while profoundly depressed. That, at least, was his legal defense. Charged with murder in the first degree, he entered a plea of not guilty, and his lawyer argued temporary insanity. The district attorney never bought the story, and neither, in the end, did the jury. The DA’s competing story—that Alec Gibson was a father who killed his mentally disabled son because he was tired of the sacrifices required and just wanted his freedom back—appealed more to a common sense that knew nothing of raising a child with severe autism. No members of the jury had such experience. Alec was found guilty and
given a life sentence.

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.”

—

T
HOUGH 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”

I
n 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, sometimes 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.