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Saturday, September 19, 2015

Autism and the Presidential Campaign

This morning, The Hill ran the piece below, which deals with some of the topics I cover in The Politics ofAutism.

During the recent GOP debate, Donald Trump suggested that kids are developing autism because they are getting too many shots too soon. “Just the other day, two years old, two and a half years old, a child, a beautiful child went to have the vaccine, and came back, and a week later got a tremendous fever, got very, very sick, now is autistic.”

Curiously, Trump used almost the same words three years ago. “It happened to somebody that worked for me recently,” he said on Fox News in 2012. “I mean, they had this beautiful child, not a problem in the world, and all of the sudden they go in and they get this monster shot…then all of the sudden the child is different a month later.”

Wherever this mysterious anecdote came from, Trump was talking nonsense. Multiple scientific studies have shown that there is no connection between autism and the vaccine schedule, or any individual vaccine. The idea of such a linkage has been circulating for years because of a 1998 study that turned out to be fraudulent. The British medical journal that ran the piece later retracted it, and its lead author lost his medical license.

Trump is hardly the first politician to spout misinformation – but in this case, it is downright dangerous. If parents take him seriously and delay vaccinations, their children could catch the diseases that the vaccines prevent. And some of these diseases can be deadly.

Trump also erred on the broader issue of autism. “Autism has become an epidemic,” he said. “Twenty-five years ago, 35 years ago, you look at the statistics, not even close. It has gotten totally out of control.” Trump unintentionally fingered a reason why we have to be cautious about declaring an “epidemic.” Thirty-five years ago was when the American Psychiatric Association’s manual first listed autism as a distinct category. And twenty-five years ago was when federal law first required the Education Department to gather national data on the number of students with autism.

When you start counting something, you usually find more of it. In this case, much of the apparent increase in autism involves better identification of people who previously would have gotten a different label. Scientists at Penn State University found no overall increase in the number of students in special education. As the number of students with an autism label has gone up, the number with an intellectual disability label has gone down.

Aside from improvements in reporting, has there also been any true increase in the prevalence of autism? Nobody knows for sure, in part because we lack good data from the past. Indeed, the most important thing for presidential candidates to know about autism is how much we don’t know.

Vaccines are one of the few purported causes that scientists have ruled out. Autism tends to run in families, so genetics probably has something to do with it. Beyond that, the possibilities include such disparate things as paternal age, maternal age, pollution, and immune responses to viruses. And until scientists know what causes autism, when and how it starts in the developing body, and how it expresses itself over time, they will have difficulty in devising medical responses. Studies show that certain behavioral and educational programs can help with symptoms, but there is little research showing how much these interventions can improve quality of life in the long run.

Information on the workings of autism policy is just as sparse. In a recent article, autism experts Paul T. Shattuck and Anne M. Roux asked us to picture a big company that tried to do business without financial statements, that is, without data on sales, spending, customer experience, or assets. Such a firm would fail. “Yet, this state of affairs is commonplace in many autism services. At a population level, we are almost completely unable to clearly describe the resources expended on services or measurable indicators of the population outcomes we hope to influence -- including the employment rate.”

So the major lesson is that we need more research – not just on biology, but on effective ways in which policy can help autistic people in the here and now. Presidential candidates should address this issue. Above all, they need to tell the truth.

Pitney, professor of government at Claremont McKenna College, is the author of The Politics of Autism: Navigating the Contested Spectrum (Rowman and Littlefield).