In a Different Key: The Story of Autism (28 page)

In the summer of 1974, it began to appear that California might be getting its turn next. That year, lawmakers in Sacramento encountered a campaign propelled by a group of autism mothers who were famously relentless in their efforts in pushing to get an autism education bill through both houses. Once, on the night of a crucial procedural vote, when their side looked like it might lose, they fanned out into the streets surrounding the statehouse and pulled lawmakers out of bars to get them back into the chamber before the roll was called.

Their leader was a woman named Kimberly Gund. Like the other mothers, she was a constant presence that year in lawmakers’ offices but was also actively going into their constituencies, driving all over the state and giving talks at any women’s club luncheon, church group, or Rotary Club meeting that would have her. She traveled with a slide projector and audio equipment, for a presentation on autism that
featured her own daughter, Sherry—and a recorded narration by the stadium announcer for the San Francisco 49ers football team, who was a friend of a friend. It certainly got people’s attention, as did Gund and the other mothers. By late summer of 1974, their
bill had passed both houses of the California legislature.

It only needed the governor’s signature. From the day it landed on his desk, a countdown started. The governor had twelve days to act—to veto the bill, or to sign it, or to do nothing, in which case it became law automatically. Several days went by and the governor had not indicated his intention. To Gund, and the whole autism community, this grew worrying. In 1974, Ronald Reagan was just completing his second and final term as governor. He had run for office determined to put the brakes on state spending, and he had made it clear that one of the sectors he suspected of budgetary extravagance was education. This did not bode well for an autism education bill that would cost the state $3,000 more
each
year for
each
child admitted to school with autism.

Gund, a Republican herself, had been selling the bill as a long-term money saver, explaining that a child who could achieve greater independence through education when young would require less state support over the course of his or her life. But she had spent so many months focused on the legislature that she had not forged any sort of relationship with the governor. And now, she had no strings left to pull. If Reagan was thinking of vetoing, the autism community needed to find a way to get him to sign instead.

Then Harvey Lapin found a string to pull.

—

D
OWN IN
L
OS
Angeles, the Lapins had not been nearly as involved with the education bill as Gund in Sacramento. But like her, they were fretting about the governor’s intentions. Harvey, a lifelong Democrat, and no fan of Reagan’s, feared the worst—a last-minute veto by an outgoing governor who was moving on to bigger things. Each day of inaction on the bill made that outcome seem more likely.

And so, Harvey called up one of his celebrity friends and asked for a favor.

Lloyd Nolan was one of the most successful character actors in Hollywood history. An Emmy winner, he was an onscreen fixture in scores of films, where he took on the role of gangster, soldier, cop, or doctor. In one ten-year period, he appeared in fifty-five movies. He was also a good friend of Reagan’s, ever since they worked on films together for the War Department during World War II. Nolan, like Reagan, also leaned to the right politically. During Reagan’s first run for president, Nolan made fund-raising appearances with the candidate.

Most important in this instance was that Nolan had a son, Jay, about whom he had said little to nothing publicly through most of his career. Jay had been institutionalized with a diagnosis of autism in 1956, when he was thirteen. He saw his family only occasionally for the next thirteen years, when they made visits to the privately run facility, which was located in Philadelphia. In 1969, Jay died at the age of twenty-six. He had choked while eating and could not be revived. His death was again something that Nolan did not comment upon in public at the time.

Four years later, however, in 1973, the bereaved underwent an apparent change of heart, when he
told his son’s story to Ursula Vils of the
Los Angeles Times
. He also testified before Congress to argue for recognizing autism as a developmental disability for the purposes of legislation. Later that year,
he narrated a televised documentary on autism called
A Minority of One
, and became involved with the National Society for Autistic Children. All this happened because Harvey talked him into it. After an uncle of Connie’s heard Nolan mention his son during a talk at his local school, Harvey asked the uncle to get Nolan’s number. After that, the die was cast. Harvey and Connie made the movie star a good friend, and an autism activist.

In September 1974, therefore, with the education bill still unsigned, Harvey and Connie invited themselves to drop by Nolan’s house, to beg him to ask his friend the governor to sign the bill into law. What happened that day became a classic in the repertoire of Harvey Lapin autism adventure stories.

After some small talk, Harvey walked Nolan over to the telephone on the bar and gestured for the famous man to pick it up. Nolan nodded. He picked up the receiver, dialed a number, and after a few
moments, as Harvey and Connie looked on, asked someone on the other end to “speak to the governor, please.”

“Lloyd Nolan,” he said, after a moment.

A minute more passed, and then Nolan said, “Hello Ron.”

Pleasantries were exchanged, then Nolan got right to it: “I know you knew that I had a son with autism, who died.”

Harvey and Connie could not hear what Reagan was saying, but whatever it was, Nolan was listening for a while.

Finally, Nolan spoke again.

“I’ve never asked anyone for anything,” he told his old friend. “But you have an education bill on your desk. Education for kids who have what my son had.”

A pause.

“I would really appreciate it if you signed it.”

As Harvey liked to say afterward, “And that was it. He asked. He hung up. We waited.”

On September 30, 1974, the last day he could act, Reagan signed the bill into law. A photograph taken that day shows Reagan seated at his desk. Over his shoulder, beside some legislators, stands his good friend Lloyd Nolan. Bernard Rimland was there too, along with Kimberly Gund. Harvey was in his dentistry office that day, seeing patients. Connie was home, as usual, looking after their three boys.

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.

—

O
NE LATE
S
EPTEMBER
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

A
rchie 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.

—

R
UTH
S
ULLIVAN, 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.