In a Different Key

by John Donvan

  Bernie Rimland also brought his son Mark to a meeting with Hoffman and some of the producers. Mark, then in his early twenties, had grown up to get along at a relatively high level. He painted, and he helped his father out, running errands and sweeping up at the ARI office. It seems that he had also paid close attention to an autographed photo of Hoffman his dad hung up in the office after an earlier visit to Los Angeles, because that day, at lunch, it struck Mark that the movie star’s hair had a lot more gray in it in real life. When he blurted this out in a loud monotone, his father cringed. Hoffman chuckled. He had officially seen autism in action.

  It was Ruth Sullivan who steered Dustin Hoffman to a young man living independently in Princeton, New Jersey. Peter Guthrie, in his twenties, had a range of savant skills—calendar calculation, a phenomenal mind for statistics, and the ability to draw objects with near-perfect perspective and in minute detail. He also had autism. He read books with no sense of their meaning and was terrified of rain. He also had great difficulty conducting a conversation; he seemed better at collecting statistics about someone he was going to meet, and then talking about those when face-to-face with that person. Yet, of everyone Hoffman met in his research phase, Peter was the one he connected with best.

  Peter had a caring and protective older brother, Kevin, who drove him into New York the first time Peter was invited to meet with the production team. It was Kevin’s idea that Peter and Hoffman go bowling together, along with Tom Cruise. A real friendship got started that day. Over the coming months, Hoffman kept up with the Guthrie brothers, inviting them to his home, watching TV with them, and watching how they interacted. The posture, the voice, and the facial expression that Hoffman would wear throughout most of Rain Man were, to anyone who knew Peter Guthrie, more than familiar.

  The plot of Rain Man was ultimately shaped, Levinson later said, by the characters of the two brothers. Charlie, a born manipulator, finds it impossible to manipulate Raymond. Instead, he has to figure out who Raymond is, and in doing so, enlarge his capacity for human connection. Raymond, for his part, does not reveal his inner self easily, not because he is deliberately evasive, but because of his autism. Little by little, more action-oriented plot points from the original script were dropped from the story, and Rain Man became a fresh, different kind of “relationship” movie.

  But it was the film’s sensitive and faithful depiction of autism that gave audiences something new to consider. One critical scene became known as the “toothpick moment.” At a diner with Charlie, Raymond asks for toothpicks, so that he can use them to eat his pancakes. The waitress accidentally drops the box, spilling the toothpicks at Raymond’s feet. Raymond glances down briefly, then softly mutters, “Eighty-two, eighty-two, eighty-two.” He is counting, in increments of eighty-two, the number of toothpicks on the floor: 246. Charlie asks the waitress how many toothpicks come in the box. She checks, and responds, “250.” Charlie scoffs, telling Raymond he was “pretty close.” But then she looks inside the box and pauses. “There’s four left,” she tells Charlie quietly. The scene was breathtaking in how quickly and quietly it revealed the extraordinary gifts that Raymond possessed.

  Hoffman, of course, was not just playing a savant. He was playing a man with autism, and the portrayal was flawless. Outside the walls of an institution for the first time, Raymond wears an expression that never changes: a slightly quizzical downward squint. His need for sameness—including a constant supply of toothpicks and underwear from Kmart—defined his journey. He has sensory issues and finds loud noises excruciating. He is naïve and literal-minded. He has a stiff gait and an obsession with sports statistics. When he is asked what it was like to be kissed for the first time, all he can say is “wet.” Usually, being touched makes him wildly upset, and when he is anxious, he runs and reruns the dialogue from an old comedy bit, the Abbott and Costello “Who’s on First?” routine. He has memorized it verbatim, without realizing that it is meant to be funny.

  In the standard Hollywood ending, Raymond might have been cured of autism. Or he might have seen enough of the world to know he wanted to live outside those institution walls forever. Or perhaps he and his brother might have grown so close during their week of adventures and misadventures that they decide to move in together. But the ending of Rain Man does not follow the expected paths. Although younger brother Charlie is profoundly transformed, destined to be a nicer guy, Raymond’s growth is less obvious. It takes some understanding of autism to appreciate how he has changed. Late in the film, for example, he gets a joke, for the first time. Two brief scenes later, he makes his first joke, which he has learned from being with Charlie. And in the movie’s final minutes—just for a moment—Raymond leans over and rests his forehead on Charlie’s, newly at ease with the physical connection to a man he recognizes as family, a concept whose meaning seems to have deepened for him. It is a small gesture that represents a giant leap.

  Yet there are no miracles. Raymond still has autism, to a debilitating degree. And because of that, he returns to the place where he feels safest. That happens to be an expensive institution that provides humane, round-the-clock care. It was an ending that spoke a real truth about autism, one that resonated for parents and people with autism: that autism is for always.

  Rain Man had its official opening in New York City on December 12, 1988. Three months later, it won the Oscar for Best Picture, Best Director, and Best Original Screenplay, and Hoffman won for Best Actor.

  There were, to be sure, some criticisms. The New Yorker’s Pauline Kael hated the movie and called it “wet kitsch.” There was some degree of grumbling in the autism community too, from parents whose friends were suddenly curious about whether their children had memorized the phone book or were good at counting toothpicks.

  At the same time, Rain Man solved a problem that had dogged parents since autism’s earliest days, which was that autism was so hard to explain to outsiders. For so long, the parents of autistic children had felt unbearably alone, and finally the public had at least a rough understanding of the condition.

  Ruth Sullivan was right, then. Rain Man changed the autism story for good. To be sure, it was still true that, for the vast majority of moviegoers, autism’s real challenges remained exactly what they were before: someone else’s emergency. But after 1988, most people at least grasped what the condition was, in some rough fashion, and also had a generally favorable view of what a person with autism might be like.

  That was progress—even if the first celebrity produced by the autism universe, Raymond Babbitt, happened to be a fictional character. It would take a real-life celebrity with autism to carry the message even further.

  —

  TEMPLE GRANDIN’S FIRST book, published when she was thirty-nine years old, in 1986, was considered groundbreaking. It was the first time that the experience of having autism was ever described in book form and in the first person, by someone who was actually living with it. Following a difficult childhood, during which her autistic traits were often disruptive and disabling, Grandin had emerged as an adult who had taken her place in the wider world. And yet, she still had autism. Her book’s title, Emergence: Labeled Autistic, attempted to cover that sweep.

  Its story was focused mostly on the 1950s and 1960s—years during which her mother’s unwavering commitment to her daughter gave Grandin the opportunity to work with teachers and family who were invested in her success. As a young child, Grandin was incapable of speech and easily overwhelmed by sensory experiences that most people don’t even notice. Once, on the way to a session with a speech therapist, her mother, Eustacia Cutler, had placed a hat on her head for the ride. To Grandin, the hat felt excruciatingly painful. Against her mother’s instructions, she yanked it off and threw it out the driver’s-side window of the car. Her mother, who was at the wheel, reached to catch it, but in doing so, she swerved into a tractor-trailer. In the stress of the moment, Grandin spoke some of her earliest words, saying the word “ice” over and over again, as the broke
n glass from the window rained down on her.

  In Emergence, she wrote that she still saw this moment vividly, as she did with everything that had ever happened to her. She described herself as a “visual thinker,” with a mind that uses pictures to recall the past and make calculations about the present and future.

  Her mother’s determination to avoid institutionalizing Grandin led to her attending a series of mainstream schools. This went well when she was in the younger grades but became more of a challenge during adolescence. She was expelled from high school for fighting. After that, she attended a Vermont boarding school for gifted children with emotional problems, where she met a science teacher named Dr. Carlock, who was able to make sense of how she thought. His encouragement changed her life. He saw the value in Grandin’s different “fixations” and used them to help motivate her to study psychology and science.

  Grandin went on to college and then moved to Arizona for graduate school, where she studied cattle’s reaction to soothing pressure, a subject she had become fascinated by. Ultimately, her research laid the groundwork for more humane handling of livestock throughout the United States. This made Grandin, by the late 1970s, a known figure in the small universe of livestock management. Her name had appeared in its trade press many times, quoted on matters related to cattle handling, or in the bylines to her own published articles on the topic. Her autism, however, was never mentioned.

  But word of Grandin’s existence at some point began to trickle out into another small universe, the one comprised of autism parents, where her story was passed by word of mouth almost like a myth. People would hear whispers about a grown woman with a PhD who had autism, somewhere out west, working with cows. The details were always fuzzy, and the woman’s identity was so vaguely known that even Ruth Sullivan, who knew everyone involved in autism in the United States in the mid-1980s, did not recognize Grandin when she bumped into her at an airport.

  Both women had landed in Chicago on the same connecting flight from St. Louis, and then sat next to each other on the shuttle bus to the hotel, where both were attending an autism conference. Though neither was much for small talk, they chatted on the ride in, and Sullivan was impressed with how much this young woman seemed to know about autism. It was only on the conference’s second or third day that Sullivan put it together—that the woman on the shuttle was the fabled PhD-holder. At that, she approached Grandin and asked her if she would be willing to speak at the following year’s conference.

  A year later, in 1987, a shy and awkward Grandin became the surprise hit of the annual conference of the National Society for Autistic Children. During an afternoon of workshops, Sullivan had slotted Grandin into a one-hour table session on “Adults with Autism,” with ten chairs provided. The seats around the table filled immediately, and behind them, another dozen people stood leaning in to hear as Sullivan began the introduction. Soon the standing audience grew to four rows deep. Sullivan called for a time-out and quickly arranged for another room with more space and a raised stage.

  Over the next sixty minutes, with Sullivan moderating, Grandin held her audience spellbound. To the parents, hearing her talk about her experience of autism was like suddenly finding an interpreter fluent in a language that had baffled them for years. Questions came fast. Why does my son spin so much? Why does sound set him off? Why won’t he look me in the eyes? Grandin could not answer all of these questions, but she explained, with a pure firsthand perspective, what life felt like from her side of the autism experience. She talked about her own sensitivity to sound, saying that it was “like being tied up to the rail and the train’s coming.” She also explained her own extreme skin sensitivity, how some clothing felt so rough that it was actually excruciatingly painful. And she talked about her difficulties communicating what she felt and in understanding what other people felt.

  It was an intensely intimate conversation, and some of the parents cried during it. This was a turning point in Grandin’s life; that day, she became known as the most famous person with autism in the world. Soon autism groups all over the country were booking her for speaking engagements. In 1988, she was invited to join the board of the Autism Society of America (formerly NSAC), the first person with the diagnosis asked to serve. Sullivan observed that with each year, with more experience in public life, Grandin became remarkably comfortable with public speaking, even graduating to using humor effectively.

  In the 1990s, Oliver Sacks, the British neurologist, included a profile of Grandin in a book of sketches of people with varying manifestations of atypical brain wiring. He was charmed by Grandin’s remark, in a conversation with him, that she sometimes felt like “an anthropologist on Mars.” He liked the phrase so much he made it the title of a piece about her in The New Yorker, and then used it later for his book.

  In 1995, Grandin published her second book, Thinking in Pictures. Told in the first person, Thinking in Pictures was the true-life account of a girl with autism who, with a great deal of support from her mother, had grown up to become a scientist, a speaker, a writer, and an inspiration to anyone in the autism community who had ever heard of her.

  —

  WHEN EMILY GERSON SAINES broached the topic of making a film about Grandin’s story during their lunch together in 2001, Grandin did not need much convincing. She quite liked the idea of a movie about her life. She also was happy to hear that Thinking in Pictures had given Emily hope, which was something they both wanted to see spread around more. They wished to spread around something else as well—a better understanding of people with autism, along with more compassion for them. It was that kind of understanding and compassion that had made it possible for Grandin, a once-unspeaking girl, to take part in a proper business lunch in Manhattan, talking about a movie deal. That day, she and Gerson Saines came to an agreement, sealed with a handshake—together, they would make a film that would get people thinking about autism as never before, one that would have a true story at its heart.

  It would take the rest of the decade to get it made. As it turned out, autism awareness would soar to unprecedented heights during that decade, but not because of anything Hollywood did. Instead, another driving force came into play early in the new millennium that produced a fundamentally new reality for autism’s place in the public’s imagination. Autism, a once-obscure condition, treated by the media as a curiosity, by politicians as a low priority, and by most of the research community as something of a career backwater, suddenly mutated into one of the most pressing matters of the day. By the end of the decade, it had become a media obsession, a political football, and the target for hundreds of millions of dollars’ worth of scientific investigation.

  The most profound change revolved around a new perception of who needed to worry about autism. Previously, the experience of autism had been limited to the families where it had already occurred. The condition was seen as so uncommon, that for everyone else, its relevance was close to nil.

  But that complacency vanished with the introduction of a single word into the autism conversation.

  “Epidemic.”

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  SOCIETY’S EMERGENCY

  When autism finally became truly “famous” in the United States, it was because people came to fear it. In the early 2000s, autism went from being something fascinating and uncommon to a threat that stalked the nation, one that might give pause to anyone raising children or even planning to. This momentous change in perception—when autism suddenly became society’s emergency—rested on a commonsense observation. There just seemed to be more children with autism around than there used to be.

  It appeared that autism had broken out of its old boundaries and was spreading fast. That was certainly how things appeared to a state senate official in California, who was the father of a boy with autism. Rick Rollens had served for twenty-four years as Secretary to the State Senate, but he resigned that position in 1996 in order to throw himself into autism activism, to help find his six-year-old a cure.

 
; In 1997, shortly after leaving his statehouse job, Rollens sought out one of the Senate’s most powerful members—Mike Thompson, the Democrat who chaired the Senate Budget Committee. They had become close friends over the years, and Rollens had a favor to ask. He wanted Thompson to insert some language into that year’s budget bill. Thompson delivered. The language went in and was still there when the bill became law in 1998.

  As a result, that year the state’s Department of Disability Services (DDS) was required to undertake an internal study on the level of services being delivered to all people with developmental disabilities over an eleven-year span, dating back to the late 1980s. The services under review included all those offered in response to the full range of developmental disabilities, from cerebral palsy to epilepsy to autism.

  Rollens, of course, was only interested in what numbers came up for autism, because he had a point he wanted to make about the condition. He was convinced that the department’s records review would prove that, all of a sudden, in the mid-1990s, more young children had autism than ever before. It was disastrous, he thought, that this increase was being overlooked. The National Institutes of Health was expending more time and effort investigating sleep disorders than looking into anything related to autism.