Autism rates have exploded. Could the definition be partly to blame?
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Dr. Wakefield, would you like to start this panel? Yes, thank you, Mr. Chairman, members of the committee. It's a great privilege to be here. 25 years ago, Dr. Andrew Wakefield, then a researcher and physician, testified in front of Congress. The purpose of my testimony is to report the results of the clinical and scientific investigation of a series of children with autism.

At this hearing, Wakefield presented research he published in 1998, which suggested that the measles, mumps, and rubella vaccine could be linked to the development of autism in children. For which he had no evidence. That's Dr. Paul Offit, director of the Vaccine Education Center at the Children's Hospital of Philadelphia, who was also at the hearing. I was subpoenaed to testify.

about whether I thought it made biological sense that vaccines could cause autism, and I didn't. In an interview with NPR's Throughline podcast, Offit says that Wakefield's theory didn't hold up. And so study after study after study, more than a dozen studies done in seven countries on three continents involving thousands and thousands of children. ♪

The connection between vaccines and autism has been debunked repeatedly, and Dr. Wakefield had his license stripped from him. Nevertheless, the theory has persisted for decades. And part of the reason why may be that autism diagnoses have soared over the last 30 years or so.

President Trump noted the rising numbers when he addressed a joint session of Congress earlier this year. And you can't even believe these numbers. And he promised his administration would get to the bottom of the rapid rise in autism. So we're going to find out what it is and there's nobody better than Bobby. Bobby is Robert F. Kennedy Jr., Trump's Secretary of Health and Human Services. We know it's an environmental exposure.

It has to be. Genes do not cause epidemics. Kennedy has spent years questioning the safety of vaccines and linking them to autism. And now he's using the power of his office to reopen settled science. Consider this. Rates of autism have exploded in recent decades. Could the clinical definition of autism itself be partly to blame? From NPR, I'm Juana Summers.

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It's Consider This from NPR. There was a New York Times headline that caught our eye this week. Quote, autism rates have increased 60-fold. I played a role in that.

It's an opinion piece written by Dr. Alan Francis. Dr. Francis, a psychiatrist, led the task force that created the fourth edition of the Diagnostic and Statistical Manual of Mental Disorders. The DSM is something of a bible for mental health professionals looking to diagnose and treat a wide variety of mental illnesses and neurological disorders.

Dr. Allen joined me to explain how he thought the changes in clinical criteria are related to autism increases. I'm curious about the timing in your piece in The Times. You wrote that the explosion in autism rates has become fodder, as you called it, for Robert F. Kennedy Jr., the health secretary's conspiracy theories. Is that why you've decided to speak out now?

Exactly. I think he researched the worldwide, you could not find a less suitable person to be leading healthcare efforts in the United States or the world. And when he began redirecting resources vitally needed for research into the causes of autism and the best way of treating it, back to trying to figure out a way, a ploy, a deceptive method of proving the vaccine theory.

I felt it was necessary to speak. And it became even worse when he fired the people on the vaccine advisory committee for the CDC and hired hacks to try to pursue the vaccine conspiracy theory that has been the passion of his life for the last 20 years. I'll just note that Kennedy's assertion that vaccines cause autism has been debunked repeatedly. There has been a host of studies that prove that they do not. But

The fact does remain that there is still no clear answer on what causes autism. Can you say that the single biggest factor driving the explosion in autism rates is driven by ways in which the definition was changed?

What happened was in 1994, we added a condition that was called Asperger's disorder. That was a very mild form of some of the same symptoms that occur in classic autism. Classic autism is absolutely unmistakable. The onset is before the age three. Severity and disabilities are tragic and lifelong. And you cannot mistake classic autism for anything else.

Asperger's is a very mild version of classic autism and therefore much more common and much more easily mistaken for other mental disorders or for normal eccentricity and social withdrawal. So the 60-fold increase was largely started by the change in definition in DSM-IV, and then it was promoted by several factors. First and foremost,

Originally, it was the fact that educational services were geared to getting the diagnosis. And any time there's a benefit related to a psychiatric diagnosis, rates jump enormously. Secondly, the Internet spread the idea of autism like wildfire. And many people incorrectly self-diagnosed themselves as autism. In some places, it became almost a badge of brilliance.

And so differences in the definition and differences in the application of the definition and the fact that educational benefits have been associated with it, that's what caused the 60-fold increase, not vaccines. We know from very conclusive studies that vaccines do not cause autism. As we're talking, I can't help thinking about

Some of the countless people out there who have struggled their entire lives, who get a diagnosis of autism as an adult, and that's like a lightning bolt moment for them. Everything suddenly makes sense. How can that be a bad thing? I think it's definitely true that human distress looks for an explanation.

And different periods of time come up with different explanations that are suddenly very popular. Everyone jumps on the bandwagon. It helps to explain to the individual the problems they're having. So I'm sympathetic to people who feel that autism is an explanation for their problems.

And sometimes it is, and then it's very worthwhile. So some people have been identified who would have been missed, and for them it can be very useful. But for the vast majority of people who carry the diagnosis now, it's questionable, and second and third opinions would be useful. Dr. Francis, to your mind, what is the best way forward for people who, as you described them, are perhaps socially awkward, who believe they might have autism spectrum disorder? Don't over-diagnose yourself.

and don't accept what may be an overdiagnosis from others. Very often, the diagnosis of autism made early in life does not remain stable throughout life. And meeting a good friend, falling in love, many life experiences help social awkwardness, and it disappears and gets better with age. So I wouldn't

be limited by the fact that I have an autistic diagnosis into thinking that I can't have a brighter future. That's Dr. Alan Francis, a psychiatrist who led the task force that created the fourth edition of the Diagnostic and Statistical Manual of Mental Disorders. Dr. Francis, thank you. Thank you very much. And always a pleasure listening to you.

You heard reporting at the start of this episode from NPR's ThruLine podcast. This episode was produced by Michael Levitt and Connor Donovan with audio engineering by Tiffany Vericastro. It was edited by Courtney Dorney. Our executive producer is Sammy Yenigan. It's Consider This from NPR. I'm Juana Summers.

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