(AP/Mark J. Terrill)

An autism expert on what Trump gets wrong about the so-called epidemic: "I see more blatantly misdiagnosed children than I’ve ever seen before"

Salon talks to Barry Prizant, author of "Uniquely Human," on vaccines, autism panic and paranoia


Scott Timberg
September 18, 2015 2:59AM (UTC)

The supposed connection between vaccination and autism has been an issue across the political spectrum in recent years, no matter how many times it's debunked. At last night’s Republican debate at the Reagan library, Donald Trump revived the issue the usual way, with an anecdote based on hearsay. He was corrected by Dr. Ben Carson, but it’s hard to know how many viewers were persuaded by an actual medical opinion.

Dr. Barry Prizant has been an authority on autism for four decades, working as a researcher, scholar and consultant. His new book, “Uniquely Human: A Different Way of Seeing Autism,” argues that we have misread autism in general.

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We spoke to Prizant from Providence, Rhode Island, where he is in private practice and teaches as an adjunct at Brown University. The interview has been lightly edited for clarity.

Were you surprised with Donald Trump bringing autism back into the public square in last night’s GOP debate?

I was very surprised. Here Donald Trump used one anecdote – from his general folk-knowledge about what he hears about autism and vaccines. So it’s basically an impression from an uninformed person who, for whatever reason, really has chosen to represent that position – that there’s a strong relationship between childhood vaccinations and autism. And that the so-called autism epidemic, which I do not believe is an epidemic, can be accounted for because of childhood vaccinations.

So much of the conversation about autism doesn’t seem to revolve around medical research. What does the science tell us here?

If I might: I’m not as black and white as some people are on this issue. As a caveat, I’m not a physician: I’m a speech/language pathologist but have been following these issues for decades.

One of the real complications is that in very rare cases, vaccines end up affecting children in very negative ways. There’s a whole literature on what’s called vaccine-injured children. But those are extremely rare cases, and in studies looking at autism – tens of thousands of cases -- no relationship has been found.

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So to say that because a child in very rare cases might be “injured” and then to take that and say, “See, that’s why we have autism,” makes absolutely no sense at all.

What was misleading, then, about Trump’s statement last night?

When he went from his one anecdote, from what he’s heard through the media – Jenny McCarthy, probably, and other people who’ve popularized this notion – and coming to this frightening conclusion: that autism and childhood vaccinations are clearly linked. The fear that it engenders in parents has already resulted in so many parents avoiding childhood vaccinations, which has resulted in measles and potentially harmful diseases.

That’s the problem – he has a bully pulpit, and he has to be very careful about the implications of what he says.

It’s not unique to the paranoid right, though – there has been panic about vaccinations on the upper-middle-class progressive left as well. Where does it come from?

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What you have to come back to, when it comes to autism: For decades, when autism was first described in 1943, the question is, Why do children have autism? One thing conveniently put aside by the vaccine theorists is that you’re talking about 25 and 30 percent of children who develop normally and then supposedly regress between 1 and 2 years of age. So just at the get-go, even if vaccines caused autism – which I don’t believe is true – you’re talking about a quarter of the population that gets that diagnosis [actually having it].

There are all kinds of theories about government conspiracy, of the government being connected to Big Pharma, in a conspiracy to cover up any “evidence.”

The one case from 2008 that people held up as conclusive regarding the relationship between autism and vaccines was a situation in which the child had a preexisting condition known as mitochondrial disease.

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A lot of the anti-vaccine theorists said, There it is! And the government actually did settle a court case and paid the family, due to their beliefs. There are lots of behaviors that people associate with autism [that are not connected].

In my book, "Uniquely Human," I argue that a lot of the behaviors we associate with autism are human behaviors. And they’re seen in other children, and in all of us. So right away, when you hear “autistic-like behavior,” these are things we see in people when they are extremely stressed in some cases, or sick in some cases. But just saying “autistic-like symptoms” does not mean autism. That’s a very important point.

So the fear engendered by someone like Trump …

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I do believe that there are some very well-meaning parents, who latch onto that because they’re so desperate for an answer. We’ve been doing a parent-retreat weekend for 20 years, and have about 60 parents we fund to go to this setting to support each other and learn together. And there are some very balanced, intelligent parents who sincerely believe that vaccination has caused their child’s autism.

But the problem is that research has demonstrated that what’s called regressive autism takes place between 12 and 24 months of age – that’s the period in which vaccinations are given. And research indicates that it’s human to look back at a time period and try to figure out what events could be the cause. So there could be a correlation, but it doesn’t mean there’s causation.

To be fair, there are some parents who say, a day or two after the vaccination, my child developed a high fever, but that’s different.

Of all the conditions that we could be talking about, autism is the one that’s caught fire politically. Why is there so much public heat around autism and vaccines?

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Primarily because of the media portrayal of the increase of autism as an epidemic. Some people are saying this is a public health crisis, an epidemic the likes of which we’ve never seen before.

I have seen an increase in the number of kids with autism. However, those numbers are incredibly inflated. I see more blatantly misdiagnosed children than I’ve ever seen before. These are children who might have some language delays, some sensory issues … But they don’t meet the diagnosis for autism and people are slapping the autism label right and left.

If the numbers of diagnoses had remained stable, I don’t think we’d be having this debate at all. There probably is an increase, but not at the inflated rates people have been reporting.

There also has ben an increase in childhood allergies, learning disabilities and other conditions, not just autism. Only in autism is the word “epidemic” used ... It's this passion around the term “epidemic” that is frightening and gets people up in arms.

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For me, far more of the money that goes into biomedical research looking for causes and cures should go into programs for people with autism now…. You have millions of people living with autism now.

You argue in your book that we misunderstand autism in general. Can you give us a sense of how we get it wrong?

The major argument is that in the media, for the general population, autism is portrayed as a tragedy. Robert Kennedy Jr., a few months ago, was talking about the tragedy of autism, and said autism was a “holocaust.” When people protested that word, he apologized and said it was the only word he could use to describe the millions of children who’ve been destroyed and the millions of families who’ve been devastated.

The point of my book is, Where are these millions of children who’ve been destroyed and the millions of families who’ve been totally devastated?

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I’ve worked with hundreds or even thousands of children and families over the years, and, yes, these are people who live with the challenges of autism. But they go on in their lives. Some parents say, We live life more deeply, we’ve met the most amazing people. Just portraying it as a tragedy doesn’t make any sense.

As long as there’s this notion that people with autism are empty shells, and cannot develop relationships, are tragic, impaired figures, that’s not going to lead society to embrace people with autism in jobs, in the mainstream.

Does the panic around autism and vaccination seem ready to go away? Is it likely to show up again in the presidential race?

I’m not sure. To the extent that it’s perpetuated in the media, it may remain a hot issue.

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People in the know – and you can say this about so much of what Trump says – when they heard him say that, they said, “That asshole, again, is just shooting with his loose lips.”

Certainly some anti-vaccine folks will say, “Trump is our hero for keeping the issue alive!” But a lot of people feel the issue’s passed. If the media don’t pick up on it, it probably won’t remain a hot-button issue anymore.

[Editor’s note: Dr. Prizant wants to make clear that he is attributing this statement to others’ reactions to Trump’s comment, and is not saying it himself. However, he has serious concerns that Trump’s inaccurate statements are inflammatory and potentially harmful to children and families.]


Scott Timberg

Scott Timberg is a former staff writer for Salon, focusing on culture. A longtime arts reporter in Los Angeles who has contributed to the New York Times, he runs the blog Culture Crash. He's the author of the book, "Culture Crash: The Killing of the Creative Class."

MORE FROM Scott Timberg

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