Minnesota Somalis worried about autism rates among their children recently invited controversial British researcher Andrew Wakefield to Minneapolis to talk to their community.
At a Somali community meeting in Minneapolis, Wakefield asked his audience to participate in a study. He told about a hundred people gathered at a Somali-owned restaurant that they could help find the cause of autism.
"It is solvable, it has a cause, it had a beginning and it must have an end," Wakefield said. "We cannot accept the damage that is being done to all of these children. It is completely unacceptable and the suffering you're going through."
Wakefield published a paper in the late 1990s theorizing a link between autism and the measles, mumps and rubella vaccinations. Kids with autism often have trouble with communication, interaction, and touch and doctors don't know what causes the condition.
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Wakefield was stripped of his medical license in England and doesn't have one in the United States. His research showing a link between autism and vaccines has been discredited by other studies and there are questions about funding Wakefield received for his research. But Wakefield stands behind his work.
Wakefield said that there are no known cases of autism in Somalia, an anecdotal observation many Somalis confirm. But there's some evidence Somali children in Minnesota might have a higher rate of autism than the general population.
A Minnesota Health Department study published last year looked at school records for 3 to 4 year olds, and found that over a three-year period from 2005 to 2008, the proportion of Somali kids receiving autism services was as much as seven times higher than non-Somali children.
But that may be because Somalis seek help from schools more often than the general population. Wakefield said answers are important.
"That's something that needs to be looked at," he said. "It's something that the authorities are very scared to look at and it's why this community has not been investigated in the past."
Wakefield proposes a study that would gather genetic information from local Somalis. Results would be collected in a database that could reveal patterns in the incidence of autism. Wakefield told his Minneapolis audience his only role would be to raise money for the project.
Many Somalis pledged to participate at that recent event, including Shukri Osman. Osman is a single mother whose 12-year-old son has autism. She said she's read about Wakefield's past.
"I know he's either some kind of controversial -- there [are] a lot of people are saying bad things about him," Osman said. "At least he's trying to give us answers and he's listening to us. We need doctors to listen to us. We live with autism, and to see a doctor who's out there, giving his time and effort and money to help us, that's a big thing for me. I am thankful that he's here and he's helping us."
Osman said her perception is that health officials haven't done enough.
But Minnesota Department of Health spokesman Buddy Ferguson said the work on autism is just taking time because there are so many basic questions to answer.
"We obviously wish we could go in and investigate this situation the same way we would investigate an infectious disease outbreak, for example, and find out what caused it and address the issue and resolve things quickly," Ferguson said. "But given the state of knowledge about autism it just really isn't that simple."
Ferguson said the state is expanding its research of autism in school records. The department of health is also in the very early stages of a project with the Centers for Disease Control and the National Institutes of Health. That study would try to find the real rate of autism among Somalis, compared to the rate in the general population.
Steven Miles, a professor of medicine and bioethics at the University of Minnesota, said the Somali community deserves careful research on autism. He calls Andrew Wakefield a researcher with a track record of fraud. Miles said Wakefield isn't the way to address the Somali community's needs.
"He's just not trustworthy," Miles said. "And it does not surprise me that he would seek out a population which is unsophisticated and desperate."
Somali parents say they don't agree with everything Wakefield says, but they'll listen to anyone who might be able to help.
One Somali man -- the father of an autistic son -- said that in his religion, Islam, God doesn't send an illness without a cure. He said he must keep looking.