In a Different Key: The Story of Autism (21 page)

It was after midnight when the women finally turned to emptying the ashtrays and busing drinking glasses back into the kitchen while their husbands hunted down hats and overcoats. Then they dispersed, stepping outside the Kahn home, and crossing the darkness to their cars.

Looking back at that night, Ruth Sullivan would always say the parents felt that something had changed as they drove away from Essex Road. Now they had one another, and now their kids’ future suddenly looked different.

“For the first time,” she would say later, “we had hope.”

13

HOME ON A MONDAY AFTERNOON

S
he only knew he was blind. That’s what the ad in the back of the newspaper had said.
“Blind Child Slow Learner.” The word “autism” wasn’t mentioned. Not that it would have meant anything to Alice Barton, who also had no notion at all of adopting a child when she’d picked up the paper that morning to peruse over coffee. But the boy’s photo on the back page caught her eye.

“Blind Child Slow Learner.” On Alice, the headline worked like an incantation. Partly, it was the fluky fact that Alice knew Braille. In the late 1960s, for no reason other than the challenge of it, she’d set out to become a fluent reader of Braille. She took classes, acquired a Braille-imprinting machine, and joined a group of volunteers who translated whole chapters of schoolbooks into pages readable by fingertip.

Though her skills were only rudimentary, she could suddenly see herself teaching this young boy to read, opening his life to books and much more. But of course, when she phoned the number in the paper, she had some questions.

“So just how slow is this little boy?”

There was a pause. “Actually,” the agency woman finally puffed out, “he’s kind of retarded.”

Actually, it was more complicated than that, but the woman likely didn’t know that herself. Frankie was six years old already, with dark features that hinted at a Mexican heritage. He was, according to anyone who laid eyes on him, a gorgeous little boy. The orphanage he lived in was located in Santa Maria, California, some sixty miles away from the Bartons’ home in Santa Barbara. He was in school there, placed in
a class with other “slow learners,” and given the label “TMR.” It stood for “trainable mentally retarded.”

Alice listened to all of this, uncertain what she was feeling. The social-services woman took that as a cue to push. “Just come up and meet him,” she urged, “and then we can talk about it.”

“I don’t think I can tackle a retarded child,” her husband, George, said when Alice had hung up.

“Well, we made the appointment,” she replied.

She and George drove up California 101 to Santa Maria on a June morning in 1970. While Alice went inside to meet Frankie’s caseworker, George, not wanting to encourage this process at all, remained outside, killing time by wandering around on the porch, then down the side of the building to the fenced-in play area out back. There, rocking on a swing, sat Frankie, all alone.

Inside, Alice was getting the full picture of Frankie’s situation. He was not blind, it turned out, but he had serious vision problems, though not so serious that he’d ever have to turn to reading with his fingertips. Then the caseworker began discussing the mental difficulties he faced, using over and over this unfamiliar term—
autism
. Alice, as she’d say later, “didn’t have the foggiest” when it came to understanding what the word meant. So the caseworker put it in terms of how much Frankie was unable to do:
he doesn’t talk, he doesn’t learn, he’s violent at times
. What’s more—
it may never get better
.

Alice was shaken. This didn’t sound like mental retardation as she understood it. It just sounded strange and a little scary. She was invited outside and around the back to see for herself what autism looked like, and then it hit her fully.
George was right
. They couldn’t tackle this. A graceful escape—that’s all she wanted now, to get George and get back to Santa Barbara as quickly as possible.

But George didn’t want to escape. To this day he can’t really explain it, but sitting out there that afternoon with Frankie, just the two of them—one a former marine, strong and able; the other a boy with autism, fragile and vulnerable—George just fell for the kid. And when Alice pulled her husband aside, the voice of pragmatism trying to talk her husband back to reality and back to their car parked out front, she could
see it in his eyes, in how he kept looking back at the boy on the swing. They were about to become a family of three. “Let’s do it,” he said.

They took Frankie home on July 3, 1970, a date that, along with his birthday, they would celebrate with a cake and candles every year after that. But the first few months were an ordeal. “An endurance contest” was George’s judgment on it, as they learned for themselves what severe autism looks like up close.

Alice had the days alone with Frankie, so George wasn’t there the first time he put his head through the wall. When he came home and saw the damaged wall, and Alice told him how it got there, all he could say was: “You’re kidding!” But the implications were beginning to dawn on him. A six-year-old boy had mustered enough raw strength—along with a startling indifference to pain—to break an eight-inch opening in a plaster wall, using only his skull.

At the same time, Frankie had started wandering the house at night, scared to be left alone in his bedroom. But because he spoke not a word, there was no way they knew to reassure him with words. George announced that a line had to be drawn, otherwise the household would be at the mercy of an unspeaking child who, a few years on, could actually hurt them, even if only by accident. Starting that night, the ex-marine posted himself outside Frankie’s bedroom, seated on the carpet, to play sentry to a six-year-old.

“No, Frank, you can’t get up,” he’d repeat each time Frankie arose, gently leading him back to bed, settling him again under the blankets. Inevitably, as George turned his back to leave, Frankie would already be on his tail. “No, Frank, not during the night,” he’d whisper, “back you go.” This went on for weeks, exhausting all three of them, but in the end, Frankie finally learned to stay in bed.

George also won the battle of the nail clippers. The first time George brought them out, Frankie spiraled into a tantrum of pure fear. But George held that Frankie both had to be and could be taught to tolerate having his fingernails clipped. Little by little, George trained Frankie out of this particular phobia. At first, he’d just show Frankie the clippers, then put them away. After a while, he started using them only on himself. Next, he made brief passes at the little boy’s fingernails, making only the most minuscule clips. Finally, Frankie relaxed
enough to have his nails clipped whenever necessary and without resistance. The process took eight months.

George, of course, had no idea that he was accomplishing the impossible. The overwhelming professional opinion of the time defined Frankie as a lost cause, not worth trying to educate. But unaware that he wasn’t supposed to try, he and Alice continued to operate on the principle that “kids will get away with whatever they want to get away with as long as you let them.”

George was improvising, more than anything else, falling back on the instincts that all parents in his situation had to work with. But he was trusting those instincts, and Alice could see that Frankie was making progress—painstakingly, but also unmistakably. Now it was both of them in love with Frankie—a kid who still never had spoken, nor ever would speak, a recognizable word. That was one of the hardest parts—the silence in between all the otherwise incomprehensible sounds that came out of Frankie’s mouth. Figuring out Frankie’s wants, his fears, his moods—it was like trying to read messages in a passing cloud. They could find it frustrating, exhausting, and all-consuming, feelings that would have been all too recognizable to Mary Triplett, Rita Tepper, or Audrey Flack.

Of course, as they were foster parents and he was a foster child, they had an escape available—an open path back to their old lives.
They could send him back
. “It’s not working out,” they could say. Or, “He needs more than we can give him.” That option dangled in the air they breathed every day. Yet they chose not to use it and did the opposite instead. They filed to adopt Frankie, and he became their son for good, loved and legal, and with a new last name—Barton.

In all of this, crucially, George and Alice were
not
alone—not in the all-encompassing way the preceding generation of parents had been. To be sure, in 1970, parents like them were still standing in a cold rain when it came to society understanding their children and what they needed. But in Santa Barbara, the Bartons knew they had company in the small circle of other parents living nearby who were also dealing with autism in their families.

These families had found one another and, by banding together and offering support, gave one another reasons to believe that something
could change for their kids—and that maybe they could make the change happen. There were not many of them in the circle, a couple dozen parents at most. But for George and Alice, and many of the others, knowing they were part of a community gave them the energy to hang on and to fight. And that, in the story of autism, was something new.

—

I
N THE MIDDLE
of a California morning in 1971, the idle lawn sprinklers out front of the Santa Barbara County Education Building suddenly spit and gurgled and spun into action. Within seconds, they had soaked a couple of people who, up until that moment, had posted themselves near the front entrance, waving hand-drawn signs and grousing about school policy. When the water hit them, they scooped up their leaflets and wet cardboard and retreated down toward the street, beyond the spray’s reach, pausing there to pull themselves together.

Inside, the superintendent of schools, watching from his office window, turned back to his desk, satisfied. He had ordered the sprinklers switched on, just as a prank, of course. The two parents down there would never know that getting sprayed was no accident. Then too, perhaps this annoyingly relentless pair, George and Alice Barton, would finally get the message:
Back off and stop wasting the school system’s time
.
Wouldn’t that be a relief?

It almost never occurs to people raising kids of “normal” health and abilities to ask where all the
other
children are. Unseen, they are not likely to be missed. It was true when George and Alice Barton were attending elementary school themselves in the 1930s: kids at their desks had no reason to wonder about the absence of children who were too far off the mark to be there—like the boy they would adopt decades later. It therefore came as a shock in the early 1970s when, as parents, they went to enroll Frankie in the Santa Barbara schools, only to learn that by law and long-standing practice, the schools could and would bar him. That realization instantly turned them into activists.

That, and a night listening to Bernard Rimland talk. These were the years when Rimland was going from town to town, spreading the gospel of autism parent power. By 1970, when he scheduled a meeting to talk
with parents in Ventura, about thirty-five miles from Santa Barbara, the autism advocacy movement was on solid footing. But before that, for a time, he’d had to work at keeping the movement from foundering off course and possibly collapsing. During NSAC’s first year of existence, tensions had developed within the leadership over style as much as substance. Some of the founding members had come to see NSAC’s president, Mooza Grant, as overly bossy, disorganized, and of questionable accountability in her handling of the organization’s money.

Grant had grievances of her own, born of the belief that she alone was shouldering most of the day-to-day workload of the movement, without sufficient support from other parents. Plus, it was her husband, Leslie, who was doing the lion’s share of the fund-raising, which took him away from home more than she liked. She was, after all, also raising twin girls with autism, one of whom was severely self-injurious—a chronic head banger, constantly at risk of cracking open her own skull. After two years, with Grant’s term expiring, an
election was held to replace her. The National Society for Autistic Children began 1968 with a new president—Ruth Sullivan.

But the schism was lasting. Even before the election, Mooza Grant had secretly been laying the groundwork to launch a competing organization, a rival for NSAC even in the name she chose for it—the American Foundation for Autistic Children, which she incorporated in Maryland. When NSAC learned of this, it threatened
legal action to prevent Grant from taking the group’s mailing list with her. It was an early harbinger of the tragic tendency of autism advocacy groups, or the individuals in them, all supposedly dedicated to the same cause, to turn against one another. It had been there at the beginning, and it would flare up, again and again, to the detriment of the greater cause, in every decade to follow.

Rimland himself would also be drawn into this unfortunate sport as years passed, but on that night in Ventura, with the Bartons and a handful of other area families gathered to hear him speak, Rimland was still living up to his saintly reputation, a defender of mothers and the lead architect of a better future for their kids. He urged parents there to organize, to agitate, to learn how to make demands. He talked them through the steps of organizing their own chapter of NSAC and
urged them not to take no for an answer. When they started to deal with the important issues—getting their children both treated and educated, which NSAC argued were usually one and the same thing—they needed to push back against the authorities. He encouraged them to bring pressure to bear on the schools and on state legislatures, not to mention on public opinion.

These were not born revolutionaries Rimland was addressing. They were middle-class Californians in their thirties or forties—people who had grown up trusting authority and its representatives—presidents, priests, school superintendents, bankers, doctors, and policemen—and decent, ordinary people usually did not put themselves in the position of challenging that authority.