In a Different Key: The Story of Autism (18 page)

But when she asked what she was supposed to do for Joe, she found the Kanner-trained specialists frustratingly silent. At the last consultation, with the psychiatrist who urged her to attend the mothers’ group, Ruth asked for recommendations for a book or two that would tell her more about autism. The woman astonished Ruth, and earned her instant dislike, by advising against doing any reading about autism on her own. She warned Ruth that this would only confuse her. Rattled, Ruth finished the appointment and headed for the exit, dragging a writhing, screaming Joe behind her. On the way, a burly psychologist belonging to the practice saw them and offered to help, hoisting Joe into his arms. For a full minute, until they reached the sidewalk, the big man was nearly overwhelmed by the little boy, but in the end, he managed to get Joe inside the car.

The unexpected kindness touched something in Ruth. For a brief second, with Joe in the backseat and the car doors locked, she let down her guard. She had started the engine, but now she leaned across to the passenger side and rolled down the window. “I hope you can help my little boy,” she called out. The man she had just privately ordained
a Good Samaritan turned and looked at Ruth for a long moment, in a way that made her feel studied, evaluated. “You’re just an overanxious mother,” he said. Ruth stepped on the gas, knowing that she was through listening to this group of experts.

—

R
UTH WENT TO
the library at the State University of New York at Albany and read through all the books and medical journals she could find that listed “autism” in the index. At the end of it, she was no longer confused. She was furious. Were they serious, these writers? That Joe had autism because
she
was cold, rejecting, and overanxious? Where was the science, she asked herself, and where was the research on how actually to
help
her son? So many mothers before her had heard this same account of autism and been crushed by it. Even those bold enough to question it usually questioned themselves even more, because expert opinion weighed against them, and because parents of disabled children so often feel a twinge of guilt deep inside—the unbearable suspicion that their children are paying the price for something they have done.

But Ruth did not succumb to those thoughts and feelings. She knew what the theory said. But reality—the reality of her own kitchen table and the nine chairs around it—told her something much more persuasive. Ruth and her husband were full participants in the baby boom, as well as being Irish Catholics. The oldest of eight children herself, she was now the mother of seven. Seven children, all loved and mothered the same way, but only one had autism. It was an experiment with a ready-made control group. Six to one? Evidence like that was all Ruth needed. It was the shield of common sense, and common sense was how Ruth approached everything in life. Not for a moment did she entertain the thought that she had made Joe autistic—not then, or ever.

Still, she was appalled by the implications of everyone else buying into the refrigerator-mother scenario. It caused harm in so many ways. It rendered the psychiatric profession useless as a resource. It stifled any impulse to conduct research on other plausible causes of autism. It brought pain and confusion to parents, especially the mothers, who
were already overwhelmed by the sheer amount of work required to raise a child with autism at home—or by the sorrow of putting that child in an institution. Above all, it wrote off the children, because the prescribed therapy, aimed at the mother, was doomed to fail from the outset.

Realizing all this awakened the doer in Ruth. It was time to lead a charge against the status quo and to do it as a mother, even if being one robbed her of credibility in the eyes of professionals. She intended to reverse that dynamic, to ensure that mothers’ insights were taken seriously, and that their actual needs were addressed. She believed in the power of large numbers, the potential for a group of women to force change. She set out to put such a group together from the small universe of mothers whose children had this uncommon condition.

The problem was finding them. Autism existed almost in secret. Parents tended not to talk about it, or even to circulate much. They dropped out of activities, quit clubs, stopped going to parties, and spent less time with relatives outside their immediate families. Most mothers in this situation had no idea how many other women like them were out there, and part of their anguish sprang from the idea that they were in it on their own. Short of putting an ad in the newspaper, or stapling flyers to telephone poles, Ruth had no way to reach them.

And then, like a gift, came the invitation to join the new group being organized by the psychiatrist she disliked so much. Ruth called the woman’s office and accepted. She was going back there, but for the last time.

—

T
HAT NIGHT, AS
the group settled into a circle of chairs and the mothers started to talk, Ruth gave every appearance of playing along. But at a certain point she casually slipped a small piece of paper and a pen to the woman seated to her right and nodded down at it. The woman understood. She jotted down her name, address, and phone number, then passed it on. Quietly, as the paper moved around the circle, the other twelve women did the same. Ruth pocketed the paper when it came back her way. She went home that night with the seeds of a movement in her hands.

The next morning, Ruth started making calls. She saw right away that she had won this early round. Every single mother she contacted responded enthusiastically to her suggestion that they form an organization of their own. A nun of Ruth’s acquaintance, on the faculty of the College of Saint Rose, found them a room in the campus library. They would meet there regularly for the next few years, not so much for emotional support but to pursue solutions to the problems they shared. They tracked down researchers working on ways to help their children communicate, strategized on changing education laws, and notified the press that they, and their children, made for a great human-interest story. Ruth turned out to be good at wooing reporters, unabashedly playing to the media’s appetite for the strange and the wondrous, like stories of kids doing puzzles upside down, and for the chance to champion valiant-seeming underdogs, like parents fighting to give their children a place in the world.

For the next two decades, national media would still mention autism only rarely, but in the mid-1960s, in upstate New York, readers of several small-town newspapers became well acquainted with this mysterious condition, thanks to frequent coverage of Ruth, her group, and their children. Every now and then, the stories pushed the right button. In February 1966, a reporter named John Machacek, then with the
Albany Knickerbocker News
, wrote a piece about a boy who was
“ready for school,” although “school is not ready for him.” Joe was the featured child. In fact, he was the only child named, as Ruth had given Machacek what he needed to make her boy’s story compelling—autism’s mysterious mix of skills and deficits. Machacek made Joe sound like a kid who could go far if he were only given a chance. “The six-year-old is superior to most children his age in reading, writing and other language skills,” Machacek wrote, but “for autistic cases like Joseph to attend regular schools, an extra teacher or assistant would have to be in the classroom in case they became uncontrollable.” Ruth had been pressing her local school district for just that remedy before the article came out. Within months of Machacek’s article, she won this round also.

It was one child, one teacher, one classroom—a onetime concession, rather than a sweeping reform. But it was a valuable win for Joe,
one that helped Ruth figure out where the pressure points were. And it was an early win for the model of advocacy that she was inventing as she went along. Years later,
she would write up a set of guidelines for younger parents based on what she had learned during this early period. From the start, she recognized the need to get across a clear story line, so that people would “feel the heat of the autism drama.” At the same time, she urged that they try to ensure that the
“poignant beauty” of the kids came through as well, to make the public care.

Ruth also discovered the value of getting through to the powerful by finding shared connections to the experience of disability. She wrote about a state representative whose readiness to help stemmed from his own childhood, when he struggled because of a clubfoot. Another legislative ally’s mother had been disabled by a stroke. Ruth saw him develop into
“one of the most sensitive and helpful legislators in our state,” while simultaneously caring for his mother. “He recognizes her,” Ruth wrote, “in some of the descriptions we give him of our autistic children.”

She learned to make friends with the secretaries of powerful people, who knew the best times to ask for meetings. She immersed herself in the technical details of the systems and bureaucracies that she wanted to change. “It means
reading reports, budgets, studies, plans, laws, regulations, briefs, court decisions, journals, newsletters [and] going, going and going to meetings…seemingly unending hours on the phone, night and day…to persuade, dissuade, encourage, cajole,” she wrote.

Ruth did not know it at first, but there were other clusters of parents in the United States fashioning their own activist responses. Jacques and Marie May, originally from France and the parents of twin boys with autism, founded a school tailored to their sons’ needs on Cape Cod in 1955. Six years later,
families in Suffolk County, New York, similarly started their own school, working out of the basements of their homes. They, in turn, modeled their efforts on a program next door in Nassau County, where parents restored a farmhouse and turned it into a schoolhouse. Each of these efforts was highly localized, however—not a basis for launching a national school-building movement. Most everywhere else, children with autism who were rejected
by state education systems as “uneducable” remained, in a self-fulfilling way, uneducated.

—

I
T WOULD BE
this way for decades to come: again and again, when something changed for the better, it was because parents had stepped up, overturning a status quo that argued against doing much to help their kids. Each generation of parents would stand on the achievements of the preceding one, but it was only this pioneering group—Ruth Sullivan and her Albany mothers, and the other organizers, scattered, isolated, and with few resources—who had to face the stubborn perception that they were part of the problem. The refrigerator-mother theory painted them as the central cause of their children’s autism, thus making their voices seem not worth hearing.

Passion and organization, therefore, would not be enough. More than anything, Ruth and the others needed a counterargument to the refrigerator-mother theory, and they needed someone with unassailable credentials and credibility to stand behind it, so that the profession of psychiatry would be forced to admit the hollowness of the refrigerator-mother myth and lay it to rest.

In 1964, that person emerged. He was a onetime locksmith from San Diego who set out to learn more about autism than anyone alive, and succeeded.

12

THE AGITATOR

T
o the world he changed, he was Bernard Rimland, PhD. To his friends, he was “Bernie.” Bernie’s doctorate was in the right field for someone with something to say about autism: psychology. He also had a son with autism, and, like Ruth Sullivan, his future partner-in-arms, he had a passion for organizing. Without a doubt, if the community of autism parents had been a church, they would have made Rimland their first saint.

Except that he was Jewish, so sainthood might not have sat very well on his shoulders. Then again, later in life, when he had grown a big, Santa Claus–sized beard,
he was famously happy to put on the red suit at Christmastime and hand out toys at the office party, where parents were welcome to bring in their autistic kids.

Bernie’s own parents were immigrants from Russia who met in Cleveland and tried to make a go of it there. Neither of them could read or write—not even in their native Russian—but his father had learned metalworking, and as World War II broke out, he moved the family to San Diego, California, where he got work in the warplane factories. Bernie, even as a young teenager, was contributing to the family finances. Starting at age fourteen, Bernie could be seen streaking by bicycle downtown into San Diego’s Gaslight District every afternoon after school, where he started to work as a locksmith’s assistant. Within a few years, still a teenager, he was a locksmith in his own right. He had a mind for systems and a curiosity about how their parts worked together.

He enrolled at San Diego State University, ignoring his parents’ view of college as an unnecessary frill. This was where he discovered
psychology, which seemed to fascinate that same part of his mind that liked taking locks apart. The internal workings of personality and the tools that had been designed to test and measure it—it was just like locks and keys, but on a higher plane. He went on to earn the school’s first-ever master’s degree in psychology.

Three years later, at Penn State, Rimland collected his PhD in experimental psychology; then he returned to San Diego to begin the job he would keep for the next thirty-two years. The Defense Department had just opened the Naval Personnel Research and Development Center, whose team of largely civilian social scientists was tasked with exploiting psychology to identify and address problematic military behaviors, with a heavy emphasis on psychological testing and data analysis.

Rimland was a prolific producer of data in the program, as he traveled to military bases all over the country to conduct research and published dozens of papers. It was a good period in his life, with all its parts in balance. He had married a woman, Gloria, whom he had known since they were children living in the same San Diego neighborhood. Bernie’s job with the navy was secure, his income was steady, and his marriage was happy. As he turned twenty-eight, the only piece missing was fatherhood. Then, in 1956, when Gloria gave birth to their son Mark, that piece fell into place as well.