JUANA SUMMERS, HOST:
There was a New York Times headline that caught our eye this week - "Autism Rates Have Increased 60-Fold. I Played A Role In That." It's an opinion piece written by Dr. Allen Frances. Dr. Frances, 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 who are looking to diagnose and treat a wide variety of mental illnesses and neurological disorders. Dr. Allen Frances joins me now.
Welcome to ALL THINGS CONSIDERED.
ALLEN FRANCES: Thank you.
SUMMERS: 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?
FRANCES: Exactly. When - I think if you searched the world wide, 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.
SUMMERS: 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?
FRANCES: You know, 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 of 3. 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 anytime there's a benefit related to a psychiatric diagnosis, it - rates jump enormously.
Secondly, the internet spread the idea of autism like wildfire. And many people incorrectly self-diagnosed themselves with autism. In some places, it became almost a badge of brilliance. And so the 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.
SUMMERS: 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 it's like a lightning-bolt moment for them. Everything suddenly makes sense. How can that be a bad thing?
FRANCES: You know, 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 the - 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.
SUMMERS: Doctor Frances, 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?
FRANCES: Don't overdiagnose yourself, and don't accept what may be an overdiagnosis from others. Very often, a 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.
SUMMERS: That's Dr. Allen Frances, a psychiatrist who led the task force that created the fourth edition of the Diagnostic and Statistical Manual of Mental Disorders. Dr. Frances, thank you.
FRANCES: Thank you very much - and always a pleasure listening to you.
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