Why does Minnesota have the nation's highest autism rate?

Tim Kasemodel quit his job to provide the full-time care needed to look after his autistic son, Thomas
Photo by Paula Keller. Courtesy of Arc Greater Twin Cities

In a modest, two-level home tucked into a hillside in the suburban town of Wayzata, Tim Kasemodel prepares for another day as a house dad. He has the slightly overweight build of a former high school wrestler, and hair that matches the messiness of the house.

His son, Thomas, has a severe case of autism and used to spread his shit on the walls. The daily stress Kasemodel endures erupts in curse-laden tirades about mercury and over-immunization. He's spent the last four years trying to persuade the Minnesota Department of Health that autism has already become an epidemic.

"Just take the time to go over the numbers," he says. "Why the hell doesn't it cause an alarm? It's fucking obvious this is an epidemic. And it's rising every year."

Back in 2001, the Centers for Disease Control funded a study to determine the prevalence of autism in the United States. The study examined only a handful of counties in only 12 states (Minnesota wasn't one of them). The statistic that investigators came up with—one child in every 150 births will be diagnosed with autism—still remains the most commonly cited number for autism prevalence.

"It's really just the number for those locations," says Courtney Leonard, spokesperson for the CDC. "But it is out there as the national average."

Autism-awareness folks like Kasemodel cringe when they hear the number cited in news reports or by politicians such as Hillary Clinton, who repeated it at campaign events during her failed bid for the Democratic presidential nomination. He points to another number as more accurate: the finding that gave Minnesota the not-so-great honor of having the highest percentage of autism diagnosis in all 50 states.

Daniel Hollenbeck, the director of information technology at Thoughtful House, an autism research center in Austin, Texas, is the guy who came up with the stat. "It was a simple calculation made with simple division. I took the number of cases of autism service provided by state public schools and divided it by the number of children enrolled," he says. "People call it a study. But it's not really a study. Anybody can do it, but what concerns me about it is that autism is affecting a far greater amount of kids than the CDC reports."

Hollenbeck published his report in 2007. The number he arrived at was that one in every 81 births in Minnesota is a child who will be diagnosed with autism—about twice the national average.

He's quick to proclaim that his statistics do not encompass every child within each state—excluded are kids who receive private education. And he concedes that Minnesota might not actually be the epicenter for autism in America; Maine and Oregon are both are within the same range when you factor in statistical variance.

Still, Hollenbeck defends his number by saying the elementary study is significantly ahead of the one published by the CDC.

"It covers far more children," he says. "But what worries me is that the number is only going up. All the data points to this, but the government is still using a number that is seven years old."

Judy Punyko, a maternal and child-health epidemiologist for the Minnesota Department of Health, says that it's difficult to place an accurate number on the prevalence of autism in the state. And she's leery of Hollenbeck's study.

"There is no objective test to determine autism," she says. "It's all based on classifying behaviors. And these classifications vary between states. So you have a fuzzy way of classifying. With severe cases there is no problem. But that's different when determining mild forms."

The health department is working to create a surveillance system for autism. But Punyko says that it will take time.

"The fact that we don't have a population-based system at the public health level makes it that much more difficult to address such questions like prevalence," she says. "There's no good answers right now."

There also are no good answers for why autism rates are rising in Minnesota. One camp believes it is due primarily to over-vaccination of infants and previous exposure to Thimerosal, a type of antiseptic containing mercury that was removed from regular childhood vaccines in 2001. Another camp points to increased awareness about the disease. "The more you look, the more you find," says Lisa Randall, executive director of Voices for Vaccines.

But Kasemodel also contends that it's plain to see that autism is on the rise. Downstairs, Thomas plays in a dimly lit basement room with a federally funded autistic specialist. They're trying to get him to eat vegetables. While a difficult task for any parent, it's nearly impossible with an autistic child. A plate with a few carrots on it sits undisturbed on a table at one end of the room. And Thomas, a slender and normal looking 11-year-old, walks around the room in a diaper, spinning a seatbelt in front of him while grunting.

"Those grunts are primarily the only sounds he makes," says Kasemodel. "What are we going to do when he's an adult?" 

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