In a Different Key: The Story of Autism (20 page)

In his foreword, Kanner shared that he and Rimland had been in touch for four years already, and that Kanner himself believed the book’s contents deserved a fair hearing. His tone made it obvious to readers that, on top of professional respect, Kanner also
liked
Rimland. The “father of autism” was anointing Rimland a member of the family.

—

W
HEN AN OBSCURE
specialist house prints a small run of a technical book with a subtitle offering a “Neural Theory of Behavior,” it can’t be considered a publishing event. At the time Rimland’s work appeared, in 1964, there was no splash made—no talk-show bookings, no newspaper reviews. There were some brief notices in an academic journal or two, which came across as cordial and mildly interested, but those took months to reach print.

Despite the lack of fanfare, it was clear that there was an audience out there who knew about Rimland’s book. It was parents who were snapping it up—mothers like Audrey Flack who saw, in Rimland’s book, the possibility of deliverance from the story of the ice-cold mother, which had caused them so much guilt and invited so much disapproval from outsiders. Flack and others read Rimland and could see at least the beginning of the end of that damaging stereotype.

Rimland later heard that
parents were actually stealing his book off the shelves of libraries, and not just to read it. They were ripping out the final pages and mailing them to Rimland. Years before the concept became popular, he had accidentally made his book interactive.

He had included a seventeen-page questionnaire, bound between his last full chapter and the start of the bibliography. It comprised seventy-six questions,
a “diagnostic checklist”: “Is the child destructive?” “Will the child readily accept new sweaters, pajamas, etc.?” “Does he consistently use the word ‘you’ when he should say ‘I’?”

He called it Form E-1—the “E” standing for “experimental.” This was, of course, his area of true expertise—test design and experimental psychology. It was intended as a draft, to show his fellow psychologists a prototype version of the kind of survey he believed could pinpoint autism in children and distinguish it from, say, schizophrenia. Naturally, he wrote, such investigators would recognize that “the form is designed for completion by the children’s parents.” Parents read that as an instruction that they were to fill out the form, and they took Rimland’s closing line—“correspondence with the author is invited”—to mean he personally wanted to see the results.

It was only a week after the book was published that the first letters started arriving. Not everybody out there was pulling the library trick. Those who happened to learn of the book’s existence early had ordered it outright from Appleton-Century-Crofts, but they too were scissoring out the questionnaire and sending it, completed, to San Diego. Some chose to type out the whole questionnaire instead; others sent carbon copies around to other families they happened to know with a child like theirs. Sometimes Rimland opened an envelope to find a single sheet, with a name, an address, and the answers to his seventy-six questions.

Autism had no central gathering place, and the book had only word of mouth to drive its marketing, so it was hit or miss as to whom Rimland heard from. In upstate New York, for example, Ruth Sullivan, as active as she was, would hear nothing of the book for quite some time.

Along with each letter Rimland received came a story. Mothers and fathers unburdened themselves to him, the only person they’d ever known carrying the title “Dr.” who also knew which questions really applied to their kids’ unusual natures. Not all of them realized they were writing to a fellow parent, because Rimland never mentioned the autism in his own family in his book. He’d done that so as not to undermine his credibility among scientific and professional readers.

The parents only knew that they’d found a sympathetic expert, who then turned out to be one of them. Rimland, for his part, treated each one of these letters as the beginning of a relationship; there was not a single family who did not receive a long letter in Rimland’s handwriting in response, and most ended up getting a phone call as well,
long distance from San Diego. Some would come to know Rimland as a dear friend.

Right from the start, Rimland recognized what these parents represented—the beginning of a movement. In the same way that Ruth Sullivan, in the smaller orbit of Albany, New York, began emerging as a force by organizing mothers, Rimland now had a connection to all these families, whose numbers climbed into the several hundreds as the months passed and their letters continued to arrive in his mailbox. Soon Rimland began organizing his navy travel schedule, which took him to bases all around the United States, to squeeze in visits to the homes of these parents. Sometimes he would pull together several families at once, giving them the comfort of knowing they were far less alone with autism than they had thought.

These families were giving Rimland something else vital as well: data. As their answers to his Form E-1 continued piling up on his desk at home, Rimland found himself, unexpectedly, the holder of more raw information on more cases of autism in children than anyone anywhere—far more even than Kanner, who was in the habit of
calling his Baltimore clinic autism’s “clearinghouse.”

This allowed Rimland to start working on studies of his own, particularly in the area of possible treatments. In 1965, he completed a special one-year program at Stanford University’s Center for Advanced Behavioral Research. Largely on the strength of his book and the publisher’s prize, he’d been awarded a one-year fellowship there, which came with no obligations other than to think and write on whatever interested him—with free secretarial support as part of the package. Naturally, he upped his reading and writing on autism.

His stature in the field of autism was growing exponentially, to the point where, in a few years, the
Salt Lake City Tribune
would refer to him as
“one of the nation’s leading authorities on autism,” and the
Oxnard Press Courier
would call him
“a recognized authority on communication and behavioral disorders.”

More important, his argument about the nature of autism as the result of something organic was making headway. When
Washington Post
writer Ellen Hoffman put together a short piece about autism in July 1969, she wrote about the conflict of views between the
“two major
schools of thought on the causes and treatment of autism”—essentially Rimland versus Bettelheim. Hoffman didn’t take sides. For the first time, the two men—one a parent, the other a blamer of parents—were being presented as public equals.

—

B
ERNARD
R
IMLAND HAD
the standing and credibility, and Ruth Sullivan had the drive and skills to organize. But in 1964, he was in San Diego, she was in Albany, and neither knew the other existed. It took a TV show, and an autism dad neither of them knew personally, to help them find each other.

Robert Crean was a playwright and a television scriptwriter during the last years of TV’s first Golden Age, when networks staged live, intelligent, challenging dramas that tended to set the bar high for everything else—for science-fiction shows like
The Twilight Zone
and courtroom dramas like
The Defenders
, each of which Crean wrote several scripts for.

Shortly after one p.m. on Sunday, February 7, 1965, a show called
Directions 65
aired on ABC.
The episode was called “Conall,” and it was about an eight-year-old boy of that name who, according to the television listing, was “severely retarded.” Actually, Conall had autism, and he was not an actor. Robert Crean, who had written the script, was his father.

The program aired, telling the story, through still photographs and tape-recorded interviews with Conall’s many brothers and sisters, of how the entire family was affected by their younger sibling’s autism. Little noticed at the time was how truly groundbreaking the program was: this was the first instance of network television broadcasting an extended profile of a person with autism. Once again, it was a parent who was behind the precedent-setting effort, motivated, one of his sons would say later, by the passion to have his family’s situation understood, both the good and the bad of it.

There was no television in the Sullivan house. Ruth had banned it, having decided TV was bad for the kids. But that afternoon, an excited relative called to let her know that she had just seen a show about autism, and that the boy in it had reminded her a great deal of Ruth’s
son Joe. Disappointed that she had missed something so monumental, Ruth decided to track down Crean himself. When she finally got him on the phone, it was a long, spirited conversation—the kind autism parents had on those rare instances when they first found one another. Crean kept
referring to the “Rimland book,” which he had just finished reading. When Sullivan confessed to having never heard of it, Crean explained to her that this book was very important, that it was the first thing he’d ever read on autism that wasn’t the same old nonsense about mothers being to blame.

Ruth wrote down the name. Bernard Rimland. San Diego. A long-distance call would cost too much. But when she and Crean hung up, she sat down and wrote Rimland a long letter.

Ruth and Rimland would click instantly. Right away, the two saw each other as natural allies. Sullivan knew how to work legislators and the media; Rimland was masterful at digesting research and could talk to doctors and scientists in their own language. Both wanted to force major change in how their children were perceived, treated, and educated. And both had been piecing together a network of parents as best they could.

In late summer of 1965, after much correspondence back and forth between them, it occurred to Sullivan, the natural organizer, that it was past time to rally these many isolated families into a single nationwide society of some sort. She pushed these ideas around on paper for a while, and then shaped them into another letter for Rimland. But it crossed in the mail with a letter from him to her, in which he informed her that he had decided, on his own, to launch a national organization, and that he would like her help.

—

T
HE
N
ATIONAL
S
OCIETY
for Autistic Children was born on the evening of November 14, 1965, in a private home in Teaneck, New Jersey, just over the George Washington Bridge from Manhattan. Over the previous weeks, calls had been made and letters sent to parents in several states, giving the time and date, and the address of a couple named Herbert and Rosalyn Kahn. The Kahns’ five-year-old son, Jerry, had been diagnosed with autism by Leo Kanner himself. Ever since, the
couple, who had two daughters as well, had not done much entertaining, so they were a little out of practice at hosting more than a few visitors at a time. On the other hand, given that this evening event fell on a Tuesday, not during school vacation, it was probably optimistic to expect many parents to turn up in Teaneck at all.

But a little after seven p.m., the first cars—some bearing license plates from as far away as Maryland and Massachusetts—began turning onto Essex Road, heading for the white-brick house standing next to where the woods stopped, across from the church, and down the street from the public school. Coincidentally, that school signified something important the Kahns had in common with all the parents arriving that night from all over. Even in Teaneck, which that year became the first school system in the United States to desegregate its all-white schools voluntarily, children with autism had no legal right to go to public school.

As eight o’clock approached, somewhere between thirty and sixty people—accounts vary—had already assembled in the Kahns’ living room. If standing up all night was going to be an inconvenience, nobody cared. Instead, in the moment when the guests finally laid eyes on one another and grasped that they had actually filled an entire house with people who knew what autism was, and what it was like to be raising a child who had the condition, the feeling in the room changed to something electric. After all those years of loneliness and blame, the parents leaned on one another, letting go in a way they never could, or ever had, even among their extended families or closest friends.

It would be this way ever after whenever and wherever autism parents got together: insiders sharing stories, swapping advice, and taking pleasure in actually getting to laugh, for a change, about autism—about those few but real moments when they find the stuff their kids do more uproariously funny than sad. On that Tuesday night in 1965, that’s what they were, for the first time—a whole house full of insiders.

At the center of the energy was the pair who had pulled the group together: Bernie Rimland, who had flown in from California, and Ruth Sullivan, who had driven down from Albany. The agenda for the evening included a talk by Mary Goodwin, a pediatrician who had been experimenting with a communication device called the “talking
typewriter,” and a presentation by Rimland on new advances in behavioral work being done with kids with autism. But the main event was the decision, by acclamation, to create the nationwide organization Rimland and Sullivan had in mind:
the National Society for Autistic Children—or NSAC—which was almost immediately referred to as “n-sack” for colloquial purposes. Their logo would be a puzzle piece, as from a jigsaw puzzle.

A few initial bylaws were discussed and officers were appointed. A mother of autistic twin girls from the Washington, DC, area, Mooza Grant, was named NSAC’s first president. Everyone there resolved to establish local chapters back home, looping in local parents and reaching out to already established groups, such as Ruth’s in Albany, encouraging them to join.

Finally, there was a discussion of launching an NSAC newsletter. Other than paying dues of two dollars a year and carrying an official NSAC membership card, that mailer would be the parents’ principal means of keeping in touch on a nationwide scale. That was key to the whole enterprise—to create a sense that, from now on, they had one another, and that they were all part of something bigger.