Sunday's debate on NBC's "Meet the Press" over vaccines and autism gave welcome exposure to an issue that won't go away quietly.
Moderator Tim Russert asked Dr. Harvey Fineberg, president of the Institute of Medicine -- part of the National Academy of Sciences -- this question: "Do you think there's an epidemic of autism or do you think it's simply a change in defining it?"
Fineberg answered: "There's definitely a huge number of cases diagnosed with autism. ... It's also clear that the definition was broadened markedly in the 1980s and 1990s, and there were increased incentives to recognize children from increased awareness and availability of services.
"No one knows with certainty what part of the increase is genuine, a genuine increase in numbers, and what part is from increased recognition of people who were already there but not previously recognized."
As readers of this column know, we believe this is the core issue in trying to understand the disorder. If in fact autism has strikingly increased in prevalence -- not just in recognition -- the idea that autism is primarily a genetic disorder doesn't hold up. No genetic illness could rise so rapidly.
But if there have always been people with autism in reasonably similar numbers, then the idea that some new trigger -- vaccines, for example -- is behind autism begins to look implausible if not impossible.
Fineberg appeared on the show with David Kirby, author of "Evidence of Harm," a new book that looks at the debate through the eyes of parents who believe vaccines triggered their child's autism. Because of the flow of the conversation, Kirby did not have a chance to address the "epidemic" issue directly.
If he had, he could have pointed to a number of studies that suggest the increase -- to 1 in 166 children -- is real; he could have cited the Centers for Disease Control and Prevention's own statement that one in six children has some kind of neurodevelopmental disorder. He could have noted the parents and education professionals who believe something bad has happened to this generation of children -- not just autism, but learning disabilities and behavior problems, asthma and diabetes that have never occurred in such numbers.
Still, it's a complicated topic, one that is not easily resolved merely by citing statistics and diagnostic categories. That's why our approach has been slightly different: We've set out to describe the natural history of autism from the beginning.
That means we looked at where and when autism was first diagnosed as a separate disorder; what kind of families had autistic children; how that demographic broadened to include a wider swath of society; and whether autism is as prevalent in some communities -- the Amish being our prime example -- as it is in others.
What we can't get past is this: The first person to diagnose autism said he'd never seen it before, and neither had anyone else. His name was Leo Kanner, and he was not some country doctor; he was the leading psychiatrist of his day, a professor at Johns Hopkins University in Baltimore. He wrote the book "Child Psychiatry." In fact, he's been called the dean or father of modern child psychiatry.
Beginning in 1938 he saw children with a behavioral syndrome that differed "markedly and uniquely from anything reported so far." Kanner wrote the landmark 1943 paper, "Autistic Disturbances of Affective Contact," about the first 11 cases.
Kanner became the world's authority on autism and saw children referred from North America and South America and as far away as South Africa.
Yet by 1958 -- 15 years after he first created the diagnosis -- he had seen just 150 autism cases. Another doctor who became the European authority on the disorder saw only 10 cases in the decade after his first paper was published; a third "found only one true case of infantile autism in 36,500 clinical cases," according to Bernard Rimland's 1964 book, "Infantile Autism."
No matter how you slice or dice the diagnostic categories, something doesn't compute -- how can there be half a million children with Autism Spectrum Disorders living in the United States today, when the man who identified the disorder could only find 150 in the first 15 years?
What's more, the oldest child Kanner diagnosed with autism was born in 1931. We found no evidence of a child diagnosed with autism who was older than that. True, some autism cases are due to organic causes -- Fragile X Syndrome or rubella in a pregnant mother -- and Kanner acknowledged that.
Still, in 1978, looking back on his career, Kanner said the first child he saw in 1938 "made me aware of a behavior pattern not known to me or anyone else theretofore."
We don't understand how a genetic model of autism fits with that. Never mind the 1990s; what happened in the 1930s? Today's medical mainstream pretty much skips over that issue, repeating the mantra of better diagnosis.
We're not so willing to dismiss the eyewitness expertise of the man who first identified the disorder -- we think his observations cannot simply be cast aside if they become inconvenient or inconsistent with a prevailing point of view. That's not a mainstream thing to do at all.
For that reason, we've gone back again to the beginning, looking for clues to the roots and rise of autism in Kanner's first cases.
We think we may have found something, which will be the subject of the next several columns.