In a Different Key: The Story of Autism (63 page)

Beyond all that, all sorts of factors impeded the counting process: geographical biases in diagnosis, shifting definitions, racial and socioeconomic influences, and the sheer logistics of counting. The social scientists who argued this view took the rising CDC numbers as a positive sign that the epidemiology was missing fewer and fewer of the people who met autism’s ever-expanding definition. This point of view further implied that, someday, the world would finally get the statistic that accurately captured all of the autism there was out there. Predictions varied as to what that figure might be, especially as it was always possible that the working definition of autism could be amended yet again.

The most extreme number proposed by credible investigators emerged from a 2011 study undertaken in South Korea, where the researchers looked at a population of more than 55,000 children and
conducted face-to-face evaluations, including children who were not attending special-education classes. By going into regular classrooms, examining children who had never been given a diagnosis before, and using broad, inclusive criteria, the researchers came up with a
prevalence rate of 1 in 38.

Time
called it “likely…the most accurate estimate of autism prevalence in school-aged children to date.” It was also the highest number ever produced by peer-reviewed researchers. The head researcher, Young-Shim Kim, disputed the idea that 1 in 38 was proof of an epidemic. “These children didn’t just show up overnight. They have been there all along,” she told
Time
.
“We just didn’t count them.”

But that too was only a theory. At bottom, the case against a modern epidemic of autism—just like the case for one—was stopped by that same stream of statistical quicksand that ran through all the many, inconsistent, distortion-prone data sets produced over the years, whose inherent problems made comparison between past and present exercises in guesswork. Even when scientists were fairly convinced that diagnostic substitution and other extraneous factors could explain some, or even most, of the perceived increase, they did not deny that some portion of it remained inexplicable.

Furthermore, the lack of evidence of an epidemic was not evidence of
no
epidemic. Therefore, most refused to rule out that a true increase in incidence had occurred in their lifetimes. That’s what it felt like, to autism families all over the world—that despite evidence for or against, there were more kids with autism around than ever before.

—

I
N
A
UGUST
2010, a few months before the South Korean study would be published in
Time
, Emily Gerson Saines got dressed up to go to an awards program in Los Angeles with Temple Grandin. She wore a gown, while Grandin wore a black cowboy outfit. In the nine years since their lunch in Manhattan, Emily’s film project about Grandin’s life had churned forward, but slowly. This was not due to the usual money problems that get in the way of Hollywood dreams. In fact, HBO had bought into the idea early, and their support had never
flagged. Emily had also met the single condition Grandin had requested before allowing the film to be made: that the producer get approval for it from
her mother, Eustacia Cutler.

The real obstacle to a quick turnaround proved to be Gerson Saines herself. She was adamant that the movie get autism right, and she was particular about what she wanted the script to accomplish. She wanted audiences to learn some basic truths about the condition, to understand how the world looked to Temple Grandin, and how Grandin had faced numerous challenges but was simultaneously rewarded with insights that escape most people. Gerson Saines also wanted to get across how autism could affect a family, including the times when autism allowed for moments of joy and laughter. Getting all that into a good script, however, proved difficult. More than one screenwriter tried, and a series of directors also failed to hit the mark Gerson Saines was aiming for.

That changed when HBO brought British director Mick Jackson onto the project in the spring of 2008. Jackson took a new pass at the script. He and Gerson Saines were often at odds during the rewriting, but in the end, a version appeared that both were happy with. Filming began in 2008 in Texas. Actress Claire Danes was hired to play Grandin as a young woman. She spent an afternoon with Grandin in New York, which was the only time they met until filming was nearly complete, when Grandin flew to Texas to spend a couple of days watching herself be played by Danes.

Gerson Saines had one misgiving about this visit. She did not want the real Temple Grandin, at this late date in the production, to begin offering notes on Danes’s performance or challenging any of the movie’s other artistic choices. That, she thought, would be disastrous.

As she and Grandin sat down for dinner that night, it occurred to her that showing her guest some of the footage already shot would help Grandin get used to the experience of seeing someone else pretend to be her. She announced that they would skip dessert and would instead head back early to the hotel room to watch some of the movie.

A short time later, the pair sat perched on the edge of Gerson Saines’s bed as scenes from the movie rolled. Grandin was delighted and amazed by what she saw.

“Claire Danes—she’s me! I can’t believe it!” she said.

But after a few more scenes had rolled, Gerson Saines heard an odd sound coming from her friend. Puzzled, she turned to look. Grandin was still staring at the screen, but this time she was crying. Gerson Saines assumed it was because of the scene they were watching, in which a horse had just died.

Instead, Grandin told Gerson Saines that she had been moved by one of the other characters in the film—her old teacher, Dr. Carlock, who was being played by David Strathairn. The real Carlock was deceased, and Grandin confessed that she had not thought of him in a while. The next day, the sadness had passed, and Grandin had a wonderful time on the set of the movie
Temple Grandin
. To Gerson Saines’s relief, Grandin raised no objections to the way it told her story.

The critical reception was spectacularly good when the film premiered in early 2010 on HBO. Everything its producer had aspired to had been achieved. Reviewers hailed the movie as “brilliant,” “triumphant,” “daring,” and “incredibly joyous and often humorous.” Naturally, comparisons were drawn with the release of
Rain Man
more than two decades earlier—not just because of its quality, but also because of the power of the spotlight it cast on autism.

The difference in 2010, however, was that by then, there were not many people left in America—or many other places—who had not at least heard about autism. The many movie reviews did not have to waste words explaining that part of the story. Autism was now famous. If anything, the uplifting story of Temple Grandin’s life served as an antidote to the general bleakness that tended to surround discussion of the condition—which was part of what Gerson Saines had set out to do.

Full confirmation came on the evening when she and Grandin, in her all-black cowboy attire, attended the Emmy Awards at the Nokia Theater in Los Angeles. As a television movie,
Temple Grandin
had been nominated for a total of fifteen Emmy Awards—only two short of the record. That night, it won seven, including the one that required Emily Gerson Saines to take the stage herself: Outstanding Made for Television Movie. In the excitement that followed the announcement,
Gerson Saines leapt to her feet and went up to collect the trophy, Temple Grandin and Claire Danes following her, along with others on the production team.

Handed the statuette, Gerson Saines began her acceptance speech. Her opening line was one that most everyone listening had heard before.

“Autism,” she began, “has
reached epidemic proportions.”

PART IX

“EPIDEMIC”

1990s–2010

40

THE VACCINE SCARE

I
f there was an autism epidemic under way in the earliest part of the twenty-first century, then it stood to reason that something had to have caused it. It would have to be something that had appeared on the landscape only a few years before the start of the new millennium, because that is when the numbers began to jump. It would also have to have been present in the lives of most children in the United States and the UK, since those were the epicenters of the phenomenon. Finally, it would have to be taking advantage of some as-yet-undetermined pathway into the bodies of these children, thus affecting their brains.

Recent. Everywhere. Invasive. Whatever the culprit, those would be its distinguishing characteristics.

In the winter of 1998, in London, a suspect was named. It was a vaccine.

—

T
HE FUROR OVER
the so-called vaccine theory of autism was fueled by a widespread panic that children could get autism from a doctor’s needle. Lasting for years,
the fear was ignited at London’s Royal Free Hospital on the morning of February 26, 1998. That day, the hospital’s media department called in reporters for a preview of a paper by one of its star researchers, a young gastroenterologist named Andrew Wakefield. His paper, written with twelve coauthors, would be appearing in a few days in
The Lancet
, Britain’s oldest medical journal, and one of its most respected. That association, and the hospital’s name,
bestowed instant credibility on Wakefield, which had a lot to do with how the world responded to what he said he had found.

Wakefield’s paper described twelve children he had seen in the previous year or two as showing autistic behaviors paired with severe intestinal inflammation. Upon further examination, Wakefield reported, he had found something else in each of the children, who were between three and ten years old: traces of measles virus in their intestinal tracts. Based on this, Wakefield and his team speculated that this three-part combination—gut issues, autism, and measles virus—comprised the basis for a single syndrome. They touched briefly on the possibility of a “causal link,” and then they named their candidate for what that causal link was: the vaccine known as MMR had been administered to eleven of the children, and not long before the stomach problems and autistic behaviors began.

MMR, a trio of vaccines delivered in a single shot, targeted three different diseases: measles, mumps, and rubella. According to the paper, eight of the twelve children had been developing normally, but then, within days of getting the injection, began to display classic symptoms of autism, including loss of speech. In one instance, the change occurred within a single day. In some cases, the authors reported, it was the parents who first suggested that the two events were linked by a “general association in time”—first the shot, followed soon after by a deterioration in behavior.

No one reading the paper could miss what its authors were getting at: that the live measles virus in the MMR vaccine might provoke inflammation in the gut, and that this inflammation might in turn cause the brain to become inflamed, resulting in autism. This was an intriguing idea, certainly, but it was still entirely speculative. The main evidence for it—the recollections of parents—was too thin to support strong scientific claims. Wakefield and his colleagues acknowledged that it was still only a hypothesis in their use of qualifiers throughout the paper: “might be,” “possibly,” “if,” and even “did not prove an association.”

The press conference was a debacle. The hospital’s PR team had placed Wakefield at a table with four other doctors, including Arie Zuckerman, the dean of the medical school, who were there to reassure
the public that the MMR vaccine was in fact safe. Wakefield, however, had
copied Zuckerman on a letter four weeks earlier in which he stated that, if asked directly, he would acknowledge his doubts about MMR’s safety. Of course the reporters egged on Wakefield to get specific about whether he saw the MMR as safe or not. As he had said he would, Wakefield replied that he had concerns about the MMR vaccine. In his view, he explained, its mixture of three kinds of live virus might be too much for some young children’s immune systems. He was not opposed to the use of a measles-only vaccine for any child—including his own. But a three-in-one shot, he said, was something that parents might want to avoid in favor of splitting the vaccination into three separate shots spaced out over time.

“I do not think the long-term safety trials on
MMR are sufficient,” he said. Then he put an ethical frame around the issue.
“One more case of this is too many,” he declared.

Zuckerman, looking shocked, jumped to his feet. The reporters who were present remember him
pounding on the lectern as he tried to erase the impact of the previous few minutes. “Hundreds of millions of doses of these vaccines have been given worldwide,” he stated. “They’ve been shown to be absolutely safe.”

For a moment, Wakefield seemed to read correctly that his boss wanted him to get back “on script.” “I just want to say a couple of things,” Wakefield broke in, “and that is to reassure you we are not at odds on our perception of the need for a measles vaccination. We are all agreed on that and that is extremely important.” But in his next sentence, he was back off again. “I don’t agree with Professor Zuckerman on the extent of the safety trials that have been conducted.”

Remarkably, another doctor on the panel then began wondering aloud if perhaps the young gastroenterologist was on to something. “It does seem,” he mused, “that this unique combination of having three viruses in the same injection may be an unnatural and unusual event.” It went on like this for more than half an hour, after which Wakefield began giving one-on-one interviews, elaborating further on why his MMR discovery merited follow-up study, and, in the meantime, avoidance of the MMR vaccine. In the next few days, his most often quoted statement—a line he used in more than one interview following the
news conference—was the one about his personal motivation for taking this stand:
“It’s a moral issue for me.”