Distrust of vaccines and the mystery behind autism's causes have created a public health problem in Minnesota.
Somali parents of children with autism and the Minnesota Department of Health are at a standoff over vaccines. The parents suspect vaccines have caused autism in their children, while the Health Department says there's no evidence of a link.
This dispute comes as fewer people overall are getting their children vaccinated and diseases once controlled by vaccines are making a comeback. Measles was once almost wiped out in Minnesota, but so far this year 23 cases have been reported -- a third of them among Somalis.
Somali parents say they understand that the Health Department wants to prevent the spread of dangerous diseases like measles. But they argue that it's not enough for them to be told that vaccines don't cause autism.
Idil Abdull, a mother of an autistic son, isn't sure if she can trust the studies that exonerate vaccines. And she said she wouldn't want to take any chances, if she had more children.
"We're frustrated," she said. "We're afraid of autism."
The despair in her community is so great that Abdull said it's hard to imagine that many Somalis will change their minds about vaccines. But she thinks some would be more open to the agency's advice if the Health Department put as much energy into figuring out the cause of autism as it has invested in preventing measles.
"Don't just come and say, 'We don't know what the cause of autism is, but we know it's not [vaccines].' But come and say, 'Here's what we're going to do.'"
But Health Commissioner Ed Ehlinger said autism research is the kind of work that's best-suited for university scientists and federal researchers.
"When we look at the causation of autism, that's not something that the Minnesota Department of Health is going to be able to do," he said. "We don't have the skills to do that."
While that reasoning may be valid, it hasn't satisfied Abdull who thinks there are other types of autism research the agency could be doing.
Abdull, who's co-founder of the Somali American Autism Foundation, is frustrated that the Health Department didn't apply for a federal grant that could have helped the agency study the prevalence of autism in the Somali community.
"What more do you want? You've got this community that really would have given them edge to get [the grant]. CDC was aware. I was calling them constantly letting them know that there is a problem here. But [the Health Department] didn't even apply."
“They all talk, talk, talk. But they're not doing anything.”Kaltun, mother of two autistic children
Ehlinger said the Health Department didn't apply for the grant because Minnesota didn't meet the government's selection criteria and the agency didn't want to waste money applying for a grant it wouldn't get.
Undeterred, Abdull contacted federal agencies on her own and eventually secured more than $400,000 to study autism prevalence in her community. That study is expected to start later this year.
Last month Abdull found an ally in New Jersey-based risk communicator Peter Sandman. He argued that the Minnesota Health Department should have made more of an effort to address the Somali community's autism concerns. Sandman even urged the agency to apologize to Somalis for what he sees as major communication missteps.
Health Department spokesman Buddy Ferguson said the agency cannot apologize for telling people the truth about vaccines. But he said the department is aware that it hasn't been able to offer much help on the problem of autism among Somalis.
"So if we're to offer an apology, it's for the fact that we can't move any faster on this," Ferguson said. "We absolutely wish that we could. But that's reality."
At the moment, the gulf between the Health Department and some Somalis seems insurmountable.
Kaltun is a Somali-born mother of two autistic boys. MPR News has agreed not to use her last name because she fears she will be ostracized by members of her community who still view autism as a shameful condition.
Recently Kaltun, who lives in Savage, made her first trip to the state Capitol to meet privately with a representative from the Health Department and the Department of Human Services.
She was hoping to convince them to do more research on autism. She left the meeting feeling deflated.
"I just see them not doing nothing," Kaltun said. "They all talk, talk, talk. But they're not doing anything."
Kaltun has no idea what caused autism in her oldest son. He's 9 now and has never talked. But she said her younger son developed normally for more than a year. Then he got his measles, mumps and rubella vaccination and stopped talking. As a consequence,
Kaltun has not immunized her daughter, who's now 6. And she said it's unlikely that the Health Department will be able to convince her to change her mind.
"The only thing that can convince me is once they find out why, what's causing it. Do some research. I mean find out something."