As an educator, Anne Harrington had her suspicions.
As a pediatrician, Dr. Dan McLellan also had his.
Both noticed an unusual number of Somali children turning up in their autism programs in Minneapolis and began to wonder why.
Now that question has captured the attention of state and federal health officials, as fears about a possible surge in autism have swept Minnesota's Somali community.
Autism, a brain disorder that can cause disruptive and withdrawn behavior, has been rising rapidly throughout the country. The discovery of a cluster among Somalis, experts say, could help scientists shed light on why. Or, it could just be a statistical fluke.
Recent news reports have prompted speculation about all kinds of potential culprits, from vitamin D deficiency to genetics to vaccines.
In Minneapolis, fears have been fueled by some puzzling statistics. Last year, Somali children made up just under 6 percent of the school population, but 17 percent of those in the early childhood autism programs (14 of 81 children). The numbers have been creeping up for several years, especially among young children.
"People are worried," said Saeed Fahia, who heads a Somali community group. "Nobody remembers any autistic children in Somalia. I'm sure there must have been some, but there were not that many."
Autistic children often have trouble speaking, adapting to change or controlling outbursts, and tend to avoid eye contact and prefer to be alone.
Somali children appear to have a more severe form of the condition, said McLellan, a developmental pediatrician and autism specialist at Children's Hospital. He estimates that 10 percent of his patients are Somali. "I do think there's something up with this," he said. "I don't know what it is."
For now, state and federal officials say they're not sure whether Somalis in Minnesota are getting autism at an unusual rate or whether there's another explanation. But they're taking it seriously enough to look closer.
"We want to understand the numbers. That's my goal," said Judy Punyko, who is heading a study group for the Minnesota Department of Health.
One of the concerns, she said, is that Somali parents may stop vaccinating their children because of widespread fears -- never proven -- that the shots might trigger autism. Just last week, federal officials warned of growing measles outbreaks among the unvaccinated.
The autism scare is "increasing a level of concern and panic," Punyko said. "We have a condition that has no known cause and there is no cure. And people are looking to us to provide them with answers."
A cultural stigma
One Somali-born woman was so alarmed by the number of Somali children in her son's autism class that she started calling politicians, news organizations and state officials to call attention to the issue. Yet because of cultural stigmas, she has kept her son's autism a secret from relatives.
"Not only is it high among us here, but we Somalis don't accept this disorder," said the woman, who asked not to be identified.
Harrington, a special education coordinator in the Minneapolis schools, has watched the number of Somali students in autism programs climb from zero in 1999 to 43 last year. The number of Somali-speaking students in the district grew as well, from 1,773 to 2,029 during that time, statistics show.
When it comes to autism, Harrington said, "the statistics will kind of leap out at you." As of July, 3.6 percent of Somali students were in autism-related programs -- about twice the district average.
The problem appears starkest in the youngest age groups. Last year, she said, 25 percent of the class for the most severely autistic preschool children was Somali. "The [parents] feel like it is something that has happened to their children here," she said. "What we're trying to do is find out ... if it is true that there's this alarming incidence."
Do numbers reveal a trend?
At the Health Department, Punyko has assembled a team of scientists to try to answer that question. She cautions against jumping to conclusions and notes that numbers can be misleading -- especially when it comes to autism.
"We don't have a blood test or a lab test to say you have autism, so it's somewhat subjective," she said. "The bottom line is that we don't have enough information."
One problem is just getting an accurate count. In Minnesota, children don't need a medical diagnosis to qualify for autism programs. Schools make their own assessments, which can vary by district.
The bigger problem, experts say, is that autism itself is a moving target. Before 1991, it wasn't even an official category in schools. Since then, the definition has expanded, and more people have been trained to identify it. Since 1997, the number of Minnesota children in autism special-ed programs has jumped tenfold, from 648 to 6,662 in grades six and under, according to the state Department of Education.
Some researchers argue that only the label has changed, not kids. In the past, many with those symptoms were called something else, such as mentally handicapped, mentally ill or simply odd.
"We know that more children are diagnosed today [than] in the past," said Catherine Rice, who heads the autism monitoring program for the U.S. Centers for Disease Control and Prevention, and is working with the Minnesota study group. "A lot of it is the change in what we call autism. But we can't say that explains all of it."
It's especially tricky to find out whether autism is increasing in a group like Somali immigrants, she said. Was it really less common in Africa, or is it simply better identified here? "We certainly get indications that autism exists in other communities of the world," Rice said, "but whether it exists to the same degree, as common, it's not quite as clear."
Intriguing hints have turned up elsewhere. Swedish researchers reported this summer that Somali children in Stockholm appeared to have three to four times the rate of autism as other children -- though the study was based on only 17 children. Another Swedish study found high autism rates among African immigrants from Uganda.
For now, there are plenty of questions, but no answers, Punyko said. "What do we tell the people in the meantime?" she said. "Just get [the children] into early intervention. And trust us, we're trying to get an answer."
Maura Lerner • 612-673-7384