In a Different Key

by John Donvan

  That said, his study—and even the criticisms of it—underscored an inescapable conclusion: no epidemic could be proven or disproven with the available numbers. The data was simply too much of a mess for anyone to be making either claim with even a hint of certainty. No credible scientist who looked at the numbers would disagree.

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  FOR A TIME in the mid-2000s, Australian TV viewers could see an emotional public service announcement in which a series of people spoke directly into the camera to describe the challenge of autism as it affected kids in Australia. At one point, a woman declares: “One out of every one hundred and sixty-six children born will have autism.”

  There was no place in that presentation to identify the 1 in 166 number for what it was—an American statistic, one that was often attributed to the CDC beginning in early 2004. As Scientific American put it three years later, the number had by then acquired a “familiar ring,” a result of its ceaseless repetition by advocacy groups and media reports on autism. From India to Ireland to Argentina to South Africa, the 1 in 166 figure became the numerical expression of the epidemic story.

  But the CDC never intended to make 1 in 166 the measure of the world’s autism rate. The statistic burst into the spotlight only because of a skillful intervention by autism parent Peter Bell. The president of Cure Autism Now, Bell was one of several leaders seated around a table in Washington, DC, in 2003, at a meeting the CDC called to share information with the nation’s various autism organizations. During the discussion, someone brought up the awkward fact that each group present, in discussing the prevalence of autism, was using a different number. This was confusing to the public and threatened to undermine the credibility of all of them. Despite the sometimes rancorous relations among the players, they agreed that consistency was of paramount importance when discussing the scale of the epidemic.

  That day, the group heard a presentation by a CDC official named Marshalyn Yeargin-Allsopp. Together with the American Academy of Pediatrics, the CDC had been reviewing recent epidemiological studies in order to come up with a more accurate estimate of prevalence for pediatricians. But as Yeargin-Allsopp told Bell and the others, the numbers were all over the map. One study she had led looked at the population of metropolitan Atlanta and found autism in approximately 1 in 300 of the children. Yet another undertaken in Utah found a far lower rate: 1 in 500. Three other studies—one covering a single New Jersey town, one an English county, and the third, the state of Illinois—yielded much higher rates: approximately 1 in 166. The prevalence question still had no simple answer, no single unifying statistic.

  When the presentation ended, Peter Bell, who had worked in corporate marketing for a dozen years, turned to Yeargin-Allsopp with a question. Was she telling them that this broad range represented “the CDC’s best estimate” of the prevalence of autism in the United States right then? Yeargin-Allsopp paused, looked around the room, and nodded. Yes, she confirmed, as of that date, the CDC had no better estimate. Now it was Bell who looked around the room, asking each person in turn whether his or her organization would agree to stick solely to one number, citing the CDC as their authority, in all future public discussion of the prevalence of autism. All agreed, and all rallied around the most alarming number in the range: 1 in 166. This became the number advertised by advocacy groups, and repeated by the news media. Soon it was widely accepted as hard fact.

  Anyone visiting the CDC’s website would discover that the agency did not endorse this. In fact, they made it clear that there was no single number, and that all of the studies employed were relatively small-scale. It stated clearly what few wanted to be told: “There is not a full population count of all individuals” with autism.

  The American Academy of Pediatrics, on the other hand, dispensed with such nuance. The “Autism Alert” the AAP issued to pediatricians in the summer of 2004 delivered what most people were probably looking for anyway: a single number that made an immensely complicated story appear simple—and also, very frightening.

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  WITHIN A FEW YEARS, the 1 in 166 figure became obsolete. By 2007, the CDC was operating what had long been lacking—a government-funded system for tracking the prevalence rates of autism over time. At regular intervals—roughly two years apart—the agency would be reporting new rates based on its own monitoring. That year, the agency announced that the measured rate of prevalence was now 1 in 150. It was a marked increase and a major headline in a world now primed to find evidence of an autism epidemic. In all subsequent reports, the CDC number kept climbing, to the point where the rate it represented was more than double the old 1 in 166.

  The CDC’s new number was still not a “full population count” of people with autism. Such an effort would have been extraordinarily expensive and beyond any possibility of true quality control. The CDC’s autism rate never had been, nor ever would be, an actual “autism census.” Instead, the monitoring program relied, as does most epidemiology, on population sampling. Specifically, to get a “national” figure, the CDC picked approximately 60 counties out of the nation’s 3,144, located in just ten states, plus all the counties in Arkansas. Rather than establish a scientifically representative sample of the nation as a whole, these sites were chosen because roughly 10 percent of the nation’s population of eight-year-olds at any point in time lived in these communities. A panel of clinicians in Atlanta—all trained for the role by the CDC—got to know each of the eight-year-olds in these communities only on paper.

  The obvious disadvantages inherent in long-distance diagnosis were somewhat balanced by the advantages of having all the evaluators applying a single, consistent set of criteria to the records of all the children from all eleven states. That way, local variations in how people viewed or diagnosed autism were less likely to skew the results. The CDC evaluators accessed school and health records and began searching through them for signs of autistic behaviors. In fact, they found themselves “diagnosing” autism, from their offices in Atlanta, in hundreds of eight-year-olds spread across the eleven states who had never been given an autism label in their lives.

  And yet, in survey after survey, the CDC results still revealed major geographical inconsistencies in prevalence rates around the country. Its data for 2008 produced a higher-than-ever “national” rate of 1 in 88—the most alarming statistic ever used by autism advocates. But this ratio disguised a huge spread in state-by-state rates, because it was merely the average of all the local results. That year, for example, the number reported for New Jersey was 1 in 49, more than four times higher than Alabama’s, which was 1 in 210. Moreover, Alabama seemed to be bucking the trend. Its reported prevalence in 2008 was 20 percent lower than in 2006—a fact few brought up amid all the talk of a worsening epidemic of autism.

  Some saw the geographical disparities as a reflection of some sort of environmental contaminant in play, more active in some localities than in others. That could explain why a New Jersey address appeared to be a higher risk than one in Alabama. This could be considered a rough road map for investigating a possible environmental driver for autism—something that no scientist, even the “epidemic skeptics,” would rule out: what is in New Jersey’s air or water that is not in Alabama’s?

  Still, this approach would have to account for the role human behavior may have played in inflating the “epidemic” numbers. New Jersey, for example, had long been a magnet for autism families, who relocated there from surrounding states, adding to its prevalence rate moving van by moving van. The families were drawn by New Jersey’s superior offerings in state-funded special education for autism, which were among the best in the nation. The same could not be said of Alabama.

  A competing explanation held that the rising numbers throughout the 2000s, rather than marking an epidemic, were a case of epidemiology catching up with reality. In this view, autism, regardless of the specific criteria, was probably always a part of the human condition, but one that it took Leo Kanner to bring into focus, followed by several decad
es of fine-tuning the definition. It was not that autism was spreading to a larger percentage of the human race than in the past, but that society, prior to 1999, had made no intensive effort to go find the people who were already living with autism among them.

  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.

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  IN AUGUST 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

  If 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 tha
t 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.

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  THE 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.