Rob Zaleski, The Capital Times
Let me confess at the outset that before the 1988 film “Rain Man” – about an autistic savant named Raymond Babbitt – I knew virtually nothing about autism.
Like most people, I’d never known anyone with the disorder or even heard anyone talk about it. Which is hardly surprising, says Maureen Durkin, a University of Wisconsin-Madison epidemiologist, because before the 1990s, autism was considered an extremely rare developmental disorder, affecting about 1 in every 2,500 children in this country.
So how does one explain that, little more than a decade later, the Centers for Disease Control and Prevention says that between 1 in 500 and 1 in every 166 children in the United States has autism?
That’s the question that Durkin and a team of researchers from the UW’s Waisman Center are attempting to answer. And it’s a question that tens of thousands of parents of autistic children have been asking ever since the startling increase became public in the mid-1990s.
One of the most outspoken parents here in Madison has been Mike Wagnitz, a senior state chemist whose daughter Josie was diagnosed with the disorder in 2001.
Wagnitz, who was featured in this space last December, is convinced that thimerosal, the mercury-based preservative found in flu vaccines, is responsible for the increase. The government and many in the medical community say that’s bunk and claim the increase is largely due to the fact that we’re doing a better job of noticing children with the disorder.
Wagnitz finds that laughable and points out that Robert Kennedy Jr. has publicly stated that missing a kid with autism is like missing a train wreck.
“So when they say they’re doing a better job of finding them,” Wagnitz told me, “I say, then where are all the 30-year-olds and 40-year-olds with autism?”
Durkin says there are a lot of people these days who believe that thimerosal is to blame and notes that veteran journalist David Kirby makes the same charge in his controversial book, “Evidence of Harm.”
But she says she doesn’t necessarily agree with Kennedy’s train wreck analogy.
“There are two things that are happening,” she says. “One is that we’re identifying a wider range of severity with the disorder. And two, it used to be that if a child was categorized as mentally retarded, you wouldn’t notice the autism.
“Now there’s a tremendous amount of what’s call co-morbidity – a co-occurrence of autism with other conditions. So those two processes are going on.”
Still, there’s no denying that there’s been a dramatic increase in autism cases or that it’s making a lot of people – and not just parents – nervous, Durkin says.
To cite another example, in 1991 fewer than a dozen children in Wisconsin’s public schools were categorized as having autism, she says. In the 2002-2003 school year, the number was 3,083.
“It’s very troubling,” she says. “And clearly it wasn’t given the attention earlier that it should have gotten. It was under-recognized and under-funded and all kinds of things. And parents’ concerns were not given adequate attention.”
Since 2004, Durkin and eight of her UW colleagues have been participating in a project funded by the Centers for Disease Control and Prevention whose aim is to establish for the first time an accurate count of the number of Wisconsin children and families affected by autism spectrum disorders, mental retardation or both.
Another goal is to help families and their doctors recognize early signs of autism spectrum disorders, she says.
Durkin is the principal investigator for the project, which just received a CDC grant to continue for another four years. (Similar projects are being conducted in nine other states.) The researchers are focusing on 10 southeastern Wisconsin counties, in which about 33,000 babies are born each year: Kenosha, Racine, Milwaukee, Ozaukee, Waukesha, Walworth, Jefferson, Rock, Green and Dane.
Durkin, who grew up in southern Wisconsin and got her undergraduate degree at UW-Madison, says she went into this with an open mind and notes that there are a lot of unusual theories about what’s causing the increase – such as the just-released study by Cornell University business professors that suggests too much time in front of the TV may be a chief factor.
“There’s no scientific evidence of that,” she says, but the study has gotten a lot of attention.
In any event, Durkin says she and other researchers feel a project like this is long overdue and says it’s unfortunate that Wagnitz and others who have had the courage to speak out have been called alarmists.
“That certainly doesn’t help the debate,” she says. “People should be talking about what’s been happening and asking questions about it.
“Parents do need to get an answer.”