by John Donvan
PART VIII
HOW AUTISM BECAME FAMOUS
1980s–1990s
38
PUTTING AUTISM ON THE MAP
Heads turned when Temple Grandin walked into the restaurant. She is a tall woman with a large face, and a voice that’s almost always a little louder than necessary. In this case, she didn’t have to say a word to get everyone’s attention—her outfit did the job just fine: a brightly embroidered rodeo-style shirt, a western belt with a huge metal shield of a buckle, and, tied around her throat, a red kerchief straight out of an Old West film.
To Emily Gerson Saines, who was watching Grandin pound toward her table, it was like gazing upon a vision. By this time, in 2001, Gerson Saines had been an autism activist for eight years, long enough to know what everyone inside the closed world of autism knew—that Grandin was, if not a miracle, the greatest celebrity that world had known.
Even while pursuing her activism for autism, Gerson Saines had continued working as a manager for movie stars, and now she had a project in mind that would bring those two worlds together. She wanted to produce a movie about autism, and she wanted to base it on a book Grandin had written years earlier called Thinking in Pictures.
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GRANDIN’S BOOK HAD special meaning for Gerson Saines. When it first came out, she had just become a member of the autism family herself. She was, at the time, in utter despair over her own son Dashiell’s diagnosis. In those first months after getting the news, she had briefly held a copy of the book in her hands, sent to her by her mother. Still in shock over the diagnosis and rendered almost immobile by depression, Gerson Saines had tossed it aside.
In her Manhattan office, where she was a high-powered media executive, Gerson Saines always wore a poker face. But at home, in the suburban village of Larchmont, New York, she often felt like she was falling apart. Dashiell was a classic “runner”—a behavior that can bring even the strongest, most resilient parent to his or her knees. Given any opportunity, Dashiell would sprint outside and into the street, and the only way to avoid this, short of putting inside locks on all the doors, was to keep him constantly under watch.
There were other issues. Dashiell did not talk. He hardly slept. He did not like to eat. And, on one particularly bad day in 1996, he made an awful mess with his own feces, smearing it all over the walls and floor of the bathroom. When Gerson Saines saw this, she went down on her knees to clean it up, digging with a toothbrush to get at the grout, to scrub out the brown stain and the smell. It’s shit, everything is shit, I’m covered in shit, my life is shit, she thought at that moment, and she began to cry. This was the side of her life that those in her office could never see.
Pulling herself together, she finished the cleanup, threw out the brush, and went upstairs to shower. On the way, she plunked Dashiell down in front of a video—something to distract him for the two minutes it would take her to step in and step out of the shower.
It was in the second minute that she heard the cars honking on the street outside. No, not that fast—it can’t be him, she thought. Trailing water, she raced to an upstairs window and looked down. It was him. Dashiell had bolted, and there he was out in the middle of the road, dancing on the blacktop as cars from both directions stopped just short of him.
Gerson Saines ran to her closet to grab some clothes so she could go and rescue her child. She was reaching for the nearest shirt when a vicious stink hit her in the face. It was coming from the shirt, she realized in an instant. It was coming from her entire wardrobe of clothes. Somehow, Dashiell had been in there too, with his feces, and had smeared it on virtually every garment she owned.
In that same instant, she accepted the single option she had available. With the honking still going on outside, and voices starting to shout as well, she tore the shirt from its hanger and slipped it on, then ripped some soiled pants from another hanger and stepped into them. Seconds later, she rushed out into the street, strands of wet hair stuck to her forehead and shoulders, her clothes streaked brown, apologies to strangers bubbling up through her lips from a still remarkably coherent place inside her. Taking Dashiell by the hand, she marched him back into the house and closed the front door behind them, shutting out everything dangerous out there, out where everyone else got to live normally.
As she heard the cars drive away, and the softer suburban hush was restored, she leaned up against the door, let go of Dashiell’s hand, and took stock. She knew it then. Of all the low points she had endured so far, this was the lowest.
But it was also in that moment, with her back to the door, that she made up her mind: Things are going to change around here. The first thing she did was to find some clean clothes. Then she called a locksmith, and, in short order, new locks were installed on the inside of every door in the house.
In time, Dashiell would grow into a handsome young adult who, after a great deal of work, acquired life skills sufficient to cope far better with the world around him. He even helped raise funds by taking part in autism walks. But that came much later. First, Temple Grandin entered his mother’s life—not long after that discouraging day—when she finally picked up Grandin’s book. She immediately became wrapped up in the message it conveyed: that autism was not an ending, nor was it a prison. Grandin and her story had served as a kind of lifeline. The book cracked her out of her inertia and launched her into activism. Indeed, one of the more energetic new autism organizations of the 1990s, the Autism Coalition for Research and Education, had Gerson Saines as a cofounder.
So, there she was, more than five years later, pitching Grandin on a movie about her life. She knew Grandin would make a great movie character in every way, her struggle and her triumph, not to mention the whole cowboy look she had worn to lunch that day. She was an authentically inspiring figure. Gerson Saines also knew, from Thinking in Pictures, that this was how Grandin had been dressing every day for at least thirty years. It was part of the legend, part of her celebrity.
As of 2001, the notion that autism had a “celebrity” made sense within the autism family, but outside of it, Grandin was not famous. In the language activists used, autism “awareness” was low, and the specific challenges faced by people who had autism—and their families—remained unknown to the public at large.
That, in fact, was part of Gerson Saines’s reason for wanting to take Grandin’s story to Hollywood. She hoped to inspire the autism community, but she also wanted to explain the condition to a wider public that was not paying any attention to autism. Because she understood that most people had much less incentive to think or feel much about the topic, one way or the other, she resolved to give them a good story so they had a reason to care. Temple Grandin’s life didn’t make for a good story; it made for a great one. Beyond that, she simply wanted to make a good film. A good film, about autism.
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IN 1969, IN his last feature film, called Change of Habit, Elvis Presley played a doctor who falls in love with a nun while both are working with underprivileged children. When a young girl named Amanda, abandoned by her mother, arrives at the clinic refusing to speak, it is the nun, played by Mary Tyler Moore, who says, “I think she is autistic.” Instantly, Presley confirms the diagnosis and goes right to the cure. Explaining to Moore that he was about to purge the girl’s “autistic frustration,” he wraps his arms around the child. Her frustration, it was implied, was the result of being deprived of her mother’s love. Now Presley administered the antidote. Hugging the abandoned little girl tighter, he began murmuring to her in that famous Elvis voice. “You’ve got to start learning how to love people,” he said. And then he began repeating, gently, the words that needed to be said: “I love you, Amanda. I love you. I love you.”
Amanda had been wrestling against Presley’s grasp, but suddenly, she stopped and found her voice. She uttered the word “mad.” Then she said, “love.” And with that, she was cured.
That was how the movies usually treated autism in the twentieth century, in the rare in
stances when it did: autism was a problem only solvable by love. It was the fundamental message of 1979’s Son-Rise, whose subtitle was “A Miracle of Love.” It told the story of real-life parents Suzy and Barry Kaufman, who claimed to have rescued their son from autism—which they traced to a lack of parental bonding—by showering their boy with attention, respecting his impulses, and mimicking his behaviors.
Back in the purely fictional category, 1993’s House of Cards portrayed a young girl who, in response to her father’s death, went silent, cold to human interaction. At the same time, she became adept at building elaborate towers out of playing cards and balancing in high places. Tommy Lee Jones, as a psychologist, diagnoses autism, but the mother, played by Kathleen Turner, refuses to accept the diagnosis, arguing defiantly that “all she needs is a little more attention from her mother.” Working from some maternal instinct, the mother constructs her own tower out of plywood, higher than a house, mimicking her daughter’s playing-card construction but on a much larger scale. The woman and the girl climb the tower together, and at that point, the child is cured.
Love was the answer, one way or the other, in each of these films, which did not veer far from the well-ingrained message, rooted in the era of mother blaming, that autism flourished where proper love was lacking.
On the other hand, an episode of the television medical drama Marcus Welby, M.D. showed its grandfatherly yet iconoclastic doctor practicing an early version of Lovaas-style applied behavioral analysis on a little boy named Paulie. Trying to get Paulie to look him in the eye, Welby rewards the boy with gumballs and a warm smile whenever he complies. When the boy resists, Welby shrieks at him, chasing the small child around the room, and finally slapping him hard across his cheek. When Paulie’s mother objects, Welby turns to her with a stern reprimand: “You will see Paulie spanked,” Welby lectures her. “You will learn to spank him yourself—or you’ll see him in an institution for the rest of his life!”
In 1969, when this episode aired, autism parents viewed the broadcast of this episode as a positive—not so much because of the ABA message but because at this time, autism still barely registered in the public consciousness. Perhaps television’s most beloved doctor would cause the public to finally pay attention. But it did not. Just as Welby, a week later, had moved on to some other malady, so too did viewers. That tended to be the pattern when Hollywood made forays into autism: it would create a blip of interest, but then most people stopped thinking about it.
Documentaries and the occasional print story also had little influence. Many of them depicted autism as exotic or as an intriguing puzzle. Magazine stories had headlines like: “The Trance Children,” “The Strangers in Our Midst,” “The Children of the Fairies,” and “The Kids with the Faraway Eyes.” Autistic children were cast as curiosities of nature, strange, mystical, and unreal. Another brand of story acknowledged the severity of autism and the strains it put on families by adopting a tone that was callously bleak. There was, for example, that notorious 1965 LIFE magazine headline that called the children “Far Gone Mental Cripples.” Rather than describe autistic children as odd, such articles described children as too broken to be fully human.
It is true that around this time, narratives about real people with autism were becoming easier to find. As a rule, these were books written by parents about their children, a model that harkened back to the original mother’s memoir of autism, The Siege, which had landed on shelves in 1967. Its author, Clara Claiborne Park, was an early autism activist who taught literature and writing at a New England college. Her story of the first eight years of raising her daughter Jessie—to whom she gave the name “Ellie” in the book—became assigned reading for young people training in special education during the 1970s, and inspired more than one student to specialize in autism. The Siege was also a persuasive counterweight to Bruno Bettelheim’s Empty Fortress, which had appeared at about the same time and was positioned as the authoritative book about autism.
While a trickle of similar memoirs appeared in the 1970s and 1980s—notably 1973’s For the Love of Ann, based on a father’s diary, and 1989’s A Child Called Noah, which inspired a story on 60 Minutes, the readership for these books was always limited. Mostly, they were read by people who were already in the autism “family.” The shared stories offered a sense of community, which softened the loneliness the families experienced, but they rarely told their readers anything about autism that they did not already know from firsthand experience.
Whether they were dramatic shows on television, or loving stories written by parents, or bleak articles published in magazines, the perceived rarity of autism gave the general public an excuse to keep thoughts of it at a comfortable distance. People could feel safe knowing autism had nothing to do with them and never would. It was a psychological novelty item, pushed out of mind when the channel was changed or the page was turned.
Then Rain Man was released, the first good movie about autism.
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IN DECEMBER 1988, when Rain Man arrived in theaters, the effect was immediate. All over the United States and Britain, anyone with an intimate connection to autism suddenly began getting questions. They came from friends and family, and, in many cases, from reporters, all of whom were newly curious about this fascinating condition they had never given much thought to, or even heard of, before seeing the movie. Bernie Rimland himself took dozens of calls. He told the readers of his newsletter that “Rain Man has stimulated every newspaper and magazine in the country to run an article on autism.” Ruth Sullivan, still the doyenne of autism activists, sat on the set of The Oprah Winfrey Show and declared, “Rain Man has advanced the field of autism by twenty-five years!” A headline in the Orlando Sentinel, appearing eight days after the movie’s premiere, nailed what had just happened: “Rain Man Puts Autism on the Map.”
Most people in the autism community agreed and were delighted by the film. Their sentiment was captured by the British autism researcher Uta Frith, who praised the movie for rendering “an outstanding portrayal” that “helped to lessen any feelings of fear and dread about autism.”
Rain Man was not perfect, but it was nearly so—the first movie to get autism right, and to reach so many people while doing so. To be sure, lesser films about the subject had preceded Rain Man, and lesser films would follow it. But that only underscored Rain Man’s longstanding uniqueness as what it was: a good film about autism.
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THE FIRST SCRIPT for Rain Man, in fact, had nothing about autism in it. The original big idea was a story about a man who had what is called “savant syndrome.” In 1983, screenwriter Barry Morrow bumped into such a person, thirty-two-year-old Kim Peek, at a conference of the Association of Retarded Citizens in Texas. Peek, too intellectually disabled to live on his own, lived with his father in Utah. He did not have autism. He did, however, have a phenomenal talent for ingesting and remembering information. He had memorized symphonic scores, the works of Shakespeare, and entire telephone directories. He was also a calendar calculator, able to name the day of the week for any calendar date going forward or backward for thousands of years. When he read books, he used his eyes independently, reading the left and the right page simultaneously.
Morrow was captivated. By October 1986, he had completed a draft script entitled Rain Man, about two brothers, one of whom had Peek’s prodigious mental gifts. The younger brother, Raymond, is developmentally disabled and heir to a fortune. The older brother, Charlie, a sour soul who has only recently discovered Raymond’s existence, just wants the money.
It was Dustin Hoffman who killed off that version of Rain Man, deciding that he wanted in on the project but that he did not want the part being offered—sour Charlie, the older brother. Instead, he wanted to play Raymond. He had seen a 60 Minutes program in 1983 about a musical savant by the name of Leslie Lemke. Unable to speak or see, Lemke could play complex piano pieces nearly flawlessly after hearing them only once. Hoffman was deeply touched by Lemke’s story. An
associate producer, Gail Mutrux, was dispatched to learn more about savants. Savant syndrome was rare, she learned, and more likely to be present in people who were intellectually disabled than people with autism. At the same time, the producers became aware of actor Cliff Robertson’s Academy Award–winning portrayal of an intellectually disabled adult in a 1968 movie called Charly. Nobody wanted merely to repeat that. And so it was settled: there had been no portrayal of an adult with autism. Raymond would be autistic.
Inevitably, Mutrux’s search to learn more about autism quickly led her to Bernie Rimland, who was running his Autism Research Institute out of a storefront around the corner from his house in San Diego. When Mutrux reached Rimland by phone, he told her he would be happy to take a look at the script and share some information about autism.
A few days later, Mutrux drove down to San Diego to meet Rimland in person. He had an armload of books and articles waiting for her, and he regaled her with all the ways that autism was fascinating. Rimland wanted Raymond to be autistic; he could foresee the publicity a good Hollywood film would bring to the cause.
The project, meanwhile, picked up and lost a series of directors—Marty Brest, Steven Spielberg, Sydney Pollack—each coming aboard and then begging off for different reasons. Ultimately, the job went to Barry Levinson, who was fresh off directing 1987’s Good Morning, Vietnam. Levinson and Hoffman were both attracted to the challenge of creating a character whose inner world would not be easy to identify with, and who, by the movie’s end, would not experience the usual cathartic leap of self-discovery. Hoffman could not wait to get started. “When people look back on my career, I’ll be remembered for two roles: Ratso Rizzo and Rain Man,” Hoffman said at an early meeting. “I want to do this picture, and I want to do it fast.”
Rimland was hired as a technical consultant, along with Darold Treffert, an authority on savants. Hoffman, of course, wanted to see what autism looked like, to try to get inside it. With help from Rimland, Mutrux dug out some documentaries, including two that were completed nearly twenty years apart but featured the same person—Joe Sullivan, Ruth Sullivan’s son. It had only been a year or so since the second of these films, Portrait of an Autistic Young Man, had been completed and aired on PBS, so the outtakes were still available. Hoffman watched all fifteen-plus hours of them. When Hoffman eventually met Sullivan, he was eating cheese puffs the way he always did—one at a time with a toothpick. Hoffman took note. In the movie, Raymond would spear his food with a toothpick.