In a Different Key: The Story of Autism (27 page)

Rieger showed them the cottage Shawn would live in. It was reserved for children with autism. Researchers from nearby UCLA and elsewhere were drawn to Camarillo because of its population of children who could be used as study subjects. As a result, Camarillo had picked up a reputation for running the best autism program of any state hospital in the nation, and a good part of the academic literature published on autism in the late 1960s and early 1970s mentioned Camarillo as a primary research site. The Lapins understood that was not necessarily saying much, as there was not much competition in this area. Still, Rieger was perhaps the most empathetic authority figure the two of them had yet encountered, and he was showing them genuine concern and respect. Maybe this
was
the right place for Shawn.

Shawn acted up throughout the visit. He screamed, tried to run
away, and grabbed at whatever fell within his field of vision. Connie, for once, didn’t feel pressured to make him behave. Part of the purpose of this visit was to let Rieger take his measure of Shawn’s disability.

Harvey and Connie didn’t realize it at the time, but Rieger had come to the conclusion that institutionalization set children up for failure.
“All the children who come to us at a state hospital have one thing in common—the difficulty in relating with other people,” he told a reporter in 1971. “They do not learn to do this in state hospitals.” Instead, many children would enter Camarillo and never go home again. Once the patients “aged out” of the children’s program, like the one he ran, they often simply transferred to the adult wards, where stories of abuse and neglect continued to surface. Rieger saw very little rationale for placing a boy like Shawn at an institution like Camarillo.

At the end of the Lapins’ tour, back in Rieger’s office, he took the lead in the conversation.

“You’ve looked around,” he said. “You’ve seen the whole setup.”

They nodded and waited. Rieger took another moment, looking from one parent to the other.

“Harvey, Connie,” he finally said quietly, “go home and figure it out. This is the
last
place you want your son,” he said. “Take him home.”

The two parents looked at each other, shocked and confused. Rieger had just spent half a day observing Shawn. He had to have seen how severe his symptoms were.

In fact, Rieger had been paying attention, and not just to Shawn. He had also watched Connie and Harvey and how they handled him. He had listened to Connie’s war stories about her dealings with the school district and taken measure of Harvey’s unusually winning personality. Maybe because of some gut instinct, and based on what he had just seen and heard, he repeated the phrase that still puzzled the two of them.

“You’ll figure it out,” he said.

—

D
RIVING AWAY FROM
Camarillo, Harvey felt an overwhelming sense of relief. The option neither of them truly wanted to see
through—sending Shawn away—had just been taken off the table. At the same time, Harvey felt Rieger had handed him a mission: to find a better solution for Shawn, or to create one if none could be found. Connie had heard it the same way.

That day changed both parents’ perspective permanently. From then on, they refused to feel helpless in the face of Shawn’s autism. Instead, they would emerge, within two or three years, as two of the most adamant and persistent autism parent activists of their generation. They worked, first, for the good of Shawn, but always with the additional purpose of improving the odds for all people with autism. It sounds like altruism, but there was a clear, pragmatic logic to their approach: whatever project or program they launched or contributed to—if they made it last for everybody, that meant it would last for Shawn.

Harvey soon approached the Los Angeles chapter of the National Society for Autistic Children (NSAC), told them he was interested in volunteering, and within a year, he was the LA chapter president. Two years later, he became the chief of publicity for the national organization. Three years after that, he was elected national president—the position once held by Ruth Sullivan.

Harvey would be instrumental in moving the organization’s national office from Albany, New York, to Washington, DC, with office space rented on Massachusetts Avenue a short cab ride from the halls of Congress. Harvey believed it critical to have access to power, and the right address for that was one close to where political power actually lived. He was also a believer in star power, and as he lacked inhibition about asking for favors, he pressed even his dental patients who might know somebody to help him get in touch with Hollywood’s big names. Once introduced to the famous, he wouldn’t let go until he’d wrangled a commitment to help the cause.

During his time as publicity chairman for NSAC, he managed to put together the first autism walks and telethons in the mid-1970s, with participation from film stars like Paul Newman and Joanne Woodward, singers like Johnny Cash and Frankie Avalon, and television actors like Joe Campanella. One day in 1973, Harvey showed
up at a Northridge, California, post office with eight hundred large envelopes addressed to TV and radio stations and newspapers across the United Sates. Each contained a press release about autism and an upcoming national conference, a recorded announcement by legendary character actor Lloyd Nolan, and a poster featuring a photograph of that year’s honorary national NSAC chairperson, Jean Peters—the actress and former wife of billionaire Howard Hughes. Peters was shown sitting with a child on her lap—a young boy in sneakers and a turtleneck sweater. The boy was Shawn Lapin.

Once again, Shawn’s visibility was calculated. For so long, the reality of autism had been kept out of sight by parents’ shame, with institutionalization as the response of choice. Now leading activists were seeing how counterproductive that reflex was. In 1972, NSAC’s president at the time, Clarence Griffith, implored parents, “Let your child be photographed.” Activist Clara Park, who wrote about her daughter in
The Siege
, made a similar appeal in a letter to parents. “The public can’t care about our children unless they know they’re there,” she wrote. “Hiding their faces is not the way to help.” During the photo shoot with Jean Peters, Shawn urinated while sitting on her lap. The Lapins, while embarrassed, were also amused, as well as impressed with how unfazed and forgiving the actress was. There was no evidence of the mishap in the final photo. Shawn, sitting on the lap of a smiling Peters, looked handsome and appealing. And that was the point.

—

F
OR
H
ARVEY AND
C
ONNIE
, committing to work for Shawn’s future helped to peel away the layers of sorrow they had felt on his behalf, letting them appreciate more of the odd and unexpected moments that come with parenthood in an autism family. They could laugh more easily, roll their eyes at Shawn’s foibles, and sometimes actually enjoy them. Harvey began building up a repertoire of “unbelievable true tales” of adventures with Shawn, which he could launch into at a moment’s notice.

“Now, this is a good one,” he’d say, and a grin would dance into his eyes. “Twice,” he would announce, holding up two fingers, “two
years running,” the IRS had audited his tax returns. Both times the agency had come to him with challenges about the amounts of medical deductions he was claiming, which must have looked excessive. “Sure, I take lots for medical,” he would protest.
“I have a kid with autism.”
Both years, after sitting down with an auditor sent from the local IRS office, and painstakingly presenting him with all the supporting paperwork—which took hours—Harvey passed his audits and was granted the deductions.

Then he got another audit notice:
“Third year in a row!”
His eyebrows would lift with disbelief, then the grin would resurface.

On the day of the audit, Harvey “happened” to bring Shawn along with him to the meeting. “I hope you don’t mind,” he said to the IRS agent, who was already opening his briefcase on the table, pulling out forms and documents from the hefty stack of papers inside it.

“He’ll just sit over on the side here and be quiet, won’t you, Shawn?” At that moment, Shawn was, in fact, quiet, as Harvey led him to a seat at the far end of the table, where, remarkably, he cooperated and sat down. The IRS man nodded, smiled, and turned back to his briefcase.

Harvey made to pull out a chair for himself so they could get started, but just as he was lowering himself into the seat, he stopped, stood upright again, and slapped himself on the forehead.

“Oh, man,” he said, “I forgot some papers we’re gonna need downstairs in the car. Would you mind keeping an eye on Shawn for a minute?”

“Sure,” the IRS man replied, with a quick glance down the table at Shawn, who was still sitting quietly, looking lost in his thoughts. “No problem. Happy to do it.”

“Great, appreciate it,” Harvey said. “I’ll be right back.” With that, Harvey stepped out, closed the door gently behind him and leaned against the wall. He tilted one ear toward the room he had just left, lit up a cigarette, and listened.

For the first few seconds, he heard only the sounds of the street traffic outside and the shuffling of papers from the other side of the door.

Then, a voice.

“Now, just what are you doing there?” The tone was friendly, but a little forced, and mildly disapproving.

“No, little boy, those are mine….”

Harvey, in the hallway, blew out a plume of smoke, watching it fold and float in front of his eyes.

“I think I just said those are mine….”

By Harvey’s estimate, less than a minute had gone by.

“Young man, didn’t you hear me?”

Harvey was enjoying this smoke. He wasn’t going to rush it.

“Stop it! Where’s your father?! Stop!”

The next sounds were, clearly, that of paper being thrown around and furniture hitting the floor.

“Give me that! Give me that!”

All right, enough, Harvey decided, and put out his cigarette.

“Oh my goodness! What’s
happened
in here?” Harvey had flung open the door to the office to discover the IRS man holding Shawn by the wrist, trying to loosen his grip on a clutch of government forms. Papers were scattered across the table and on the floor, and two chairs were knocked over on their backs. And then there was a new sound: Shawn had started screeching.

“Suffice it to say,” Harvey would always wrap up, “the guy was suddenly in a huge hurry to get the hell out of there.” The point had been made. Harvey did indeed have a son whose condition justified all those medical bills. This third audit took less than an hour. It was also the final audit Harvey would face over Shawn’s medical bills.

—

H
ARVEY
’
S STORIES
, thoroughly amusing to Harvey himself, were also something he used to entertain, charm, and lure support to their cause. The IRS tale was a perfect vehicle for explaining the depth of Shawn’s disability and the challenges his family faced because of it, but in a way that invited the listener to laugh, like an insider, or an ally. And finding and nurturing allies was a key part of the strategy. He and Connie were always working on the next connection to be made, the next string to pull, keeping an eye out for anyone who could make a difference for Shawn—and, by extension, every kid with autism.

A good many of the people who were making a mark on autism activism and understanding in the 1970s—Bernie Rimland, UCLA
psychologist Edward Ritvo, Anne Donnellan of the University of Wisconsin, documentary filmmaker Mike Gavin, disability rights activist Dr. Bill Bronsten, and many others—could attest to long, wine-filled evenings over good food and spirited storytelling at the Lapins’ dining room table in Northridge, because they had become friends. And outside of that intimate circle, it was still true that anyone else who “mattered,” whether in science, education, law, and disability activism in general, could also count on hearing from Connie and Harvey eventually. They got to know everyone, and everyone got to know them.

Naturally, therefore, they soon established a relationship with Tom Gilhool, who became such a good friend that, once, when Gilhool landed in Los Angeles with his two children for a California vacation, only to find his hotel had botched his booking, the three of them ended up staying with the Lapins instead. Connie and Harvey, for their part, looked to their lawyer friend to counsel them through the battle they now considered unavoidable.

It was a battle they shared with other autism parents, and an unexpected result of the growing deinstitutionalization campaign. This was the dilemma they faced: while the assault on institutions was slowly forcing school districts to concede a broader obligation to educate children with disabilities, no school district regarded this obligation as encompassing every single child. Districts could, and did, continue to exclude children considered too challenging for their programs. Children with autism, in other words, though less likely to be sent to institutions, still had no right to go to school.

Shawn Lapin turned four in 1972, and though he had begun attending a pilot autism program at the county’s expense, its mandate would expire in less than three years, when he would turn seven. Unless the Lapins could manage to squeeze open the door for autism in California, Shawn would be shut out of school once more.

And so, with Gilhool offering legal expertise,
the Lapins sued, in parallel with autism parents elsewhere, who stood up to litigate and lobby in courtrooms and statehouses across the United States. They were all demanding the same thing: mandates for education that would explicitly spell out the word “autism.” The lawsuit the Lapins filed to
get their son into public school was titled, naturally,
Shawn Lapin v. State of California
.

—

W
HILE THE
L
APINS
prepared their case for the courts, encouraging things were starting to happen in the chambers of another branch of government—the state legislatures. The lobbying efforts of NSAC and its local chapters around the country were starting to pay off. Around the country, lawmakers had begun to pay more attention to the autism story, and laws supporting education for kids with autism were getting passed.
The NSAC June 1974 newsletter read like a celebration of parent power. Under Maryland: “The Maryland state chapters…were able to effect the passage and signing into law of legislation which provides for comprehensive education services.” Under Oklahoma: “The Oklahoma chapter’s time spent in…negotiation with the Tulsa Public Schools was fulfilled by establishment of the first public school class for autistic children in Oklahoma on August 27, 1973.” And on it went: four new “autistic programs” in Toledo schools, seven new classes for “autistic and autistic-like” children in Northern Virginia schools, two new classes for autistic children in Lubbock, Texas, schools, and so on.