In a Different Key: The Story of Autism (58 page)

This was not a process that moved quickly. It took three years to
get the first 150 families through it, at which point another 250 were already in the pipeline. The cost of sustaining the program eventually exceeded more than $1 million annually. But significant support arrived in the form of a multimillion-dollar grant from the National Institutes of Health, which was a major boost to Cure Autism Now. Getting outside money steered to autism had always been one of its goals, and getting that level of financial commitment also proved that it had conquered the quality-control challenge.

Certainly, the scientific community was convinced. As the collection slowly climbed, passing 540 samples collected in the 2005 edition of its online publication,
ADVANCES
, researchers from all over the world were calling on the library’s resources regularly and had begun publishing papers crediting Cure Autism Now for their work on autism’s genetics. By then, at least
sixty-three authors had cited the database in their publications.

To be sure, these initial rounds of deeper research into the genomes of diagnosed individuals only confirmed that the “code” everyone wanted to crack was going to be even more complex than anticipated. But even that recognition represented a significant advance.

—

O
N THE
E
AST
C
OAST
, as Karen and Eric London had hoped, getting real scientific results from the first round of NAAR-funded studies made it easier to raise funds for the next. Having more funds yielded still more quality research. The virtuous cycle continued. In 1998, the second year of its grant program, NAAR underwrote ten studies in the amount of half a million dollars. In 1999, when proposals came from as far away as Italy and Russia, sixteen recipients received $800,000 in grants and fellowships. The fellowships fulfilled a specific ambition of the Londons. Awarded in chunks of $100,000, split over two years, they were available to young researchers and MDs who were committed to making the biomedical dimension of autism the full-time focus of their developing careers. There was no shortage of applicants. Thanks to the Londons, a new kind of career path was being born as the new millennium began.

Then the Londons set out to build a library of biological material
too. In NAAR’s case, the goal was to create a bank of brain tissue, to permit anatomical research. In most cases, children with autism die unexpectedly—overwhelmingly
by drowning or by seizures. NAAR created protocols for making sensitive yet timely approaches to grieving families, suggesting organ donation for the sake of future
generations of kids. Over time, word of the tissue bank’s existence spread among America’s autism community and donations increased. Physically stored at the Harvard Brain Tissue Resource Center, the autism brain bank quickly caught the attention of researchers, launching many studies that might never have been undertaken otherwise.

—

T
O BE SURE
, differences in style would continue to distinguish CAN and NAAR, along with nuances in philosophy. But in reality, as time passed, “Hollywood” and “Princeton” cooperated more than they competed. The two groups coordinated their calendars, so that they were not soliciting research proposals from the scientific community at the same time. They mentioned each other favorably in their respective newsletters and referred prospective researchers to each other when it seemed to be a better match. They scrupulously avoided criticizing each other’s scientific choices in public.

The autism community had by this time grown accustomed to the idea that there were two organizations taking the lead in biomedical research, bringing about profound and enduring changes in the ways autism was investigated, perceived, and funded for research purposes. Working with nearly identical goals, these two groups inspired scientists from disparate and rarefied branches of research to embrace the mystery of autism as worthy of their time, their energy, and their own big ideas.

In 2001, NAAR and CAN jointly cosponsored the first International Meeting for Autism Research as an add-on to that year’s conference of the Society of Neuroscience. Nicknamed IMFAR, it was a sign of how successfully the two groups had legitimized autism research that some two hundred scientists from the United States and Canada, who came for the main neuroscience conference, also made time for the autism meeting. This was the same pool of researchers among
whom Eric London had strolled only a few years earlier, scanning their posters in vain for any sign of interest in autism and encountering impatience when he tried to bring it up. Now they were interested.

Those first two hundred scientists were only the start. Over the next few years, as IMFAR became a stand-alone event, researcher attendance doubled, then doubled again, as scientists traveled from six continents to be there. Even news organizations began sending representatives, looking for stories among the hundreds and hundreds of papers, posters, and presentations that scientists had now become eager to publicize.

For getting all this started—for creating this new scientific attention paid to autism, for getting money to move in that direction, for getting young researchers to make understanding autism the focus of their careers—the credit would always belong to the founders of CAN and NAAR. They pushed the boundaries—which had always existed, and always would, at the point where what was known for certain about autism collided with its persistent mystery. They were forever confounding, these boundaries—to where the experts could never decide for sure where autism’s very outlines were to be found, and such that parents would continue to dream of leaping the mystery’s own frontiers in one jump, as some once thought they could do, with fingers on a keyboard. But those four parents settled instead for the hard work of science. Largely because of what they started in the 1990s, the boundaries of knowledge would continue advancing while the mystery yielded, only little by little, but year by year, to inroads made by solid science.

But during these same years, and even as early as that first IMFAR conference the parents pulled together in 2001, there was another force in play, which trained a brighter spotlight on the subject of autism than ever before. It wasn’t just scientists paying attention to the condition anymore. For the first time, a much larger public was learning what autism was about, but in ways that moved their response, in remarkably short order, from curiosity to fear.

PART VIII

HOW AUTISM BECAME FAMOUS

1980s–1990s

38

PUTTING AUTISM ON THE MAP

H
eads 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
.

—

G
RANDIN
’
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.

—

I
N
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.”