Autism might not be any more prevalent among Somali-heritage children in Minneapolis than it is among white children in the city, but the severity of the developmental disorder appears harsher in this minority group.
In a much-anticipated report released Monday, University of Minnesota researchers found statistically similar rates of autism symptoms among 7- to 9-year-olds in Minneapolis, regardless of whether they were Somali or white. But all of the Somali-heritage children with autism also had related intellectual disorders — defined as scoring 70 or less on IQ tests — compared with a third of autistic children in the study overall.
“Somali children are much more likely to also have an intellectual disability, which means their symptoms, their characteristics, the ways in which autism presents itself in these children are very different,” said Amy Hewitt, the lead author of the study and a senior research associate in the university’s Institute on Community Integration.
Concerns about the prevalence of autism among Somali children surfaced among parents in 2008, and were validated in 2009 when a report from the Minnesota Department of Health found that Somali preschoolers were two to seven times more likely to receive autism services from the Minneapolis public school system.
The U study, released Monday, was an outgrowth of that Health Department report, and is the largest examination ever in the United States of autism prevalence among Somali immigrants’ children.
Rather than counting the number of children signed up for autism services, or even who have received a diagnosis of the developmental disorder, the researchers examined medical records from thousands of participating families and evaluated whether children met the medical criteria for autism — regardless of whether it had been diagnosed.
The net result was that one in 32 Somali children in the study met the diagnostic criteria for autism, compared with one in 36 white children. The rates were notably lower at one in 62 for non-Somali black children in Minneapolis, and one in 80 for Hispanic children. The rates for the Somali and white children were higher than national averages as well.
Somali autism advocate Idil Abdull said she felt emotionally overwhelmed when she learned of the study results, because they officially recognize a public health problem in her immigrant community that Somalis have long confronted on their own.
Autism is marked by difficulties in communicating and forming relationships, as well as struggles with language and abstract concepts, which Abdull said is noticeable in a culturally verbose Somali community.
“Somalis are very talkative,” said Abdull, whose 11-year-old son is autistic, “and our children are not talking. That’s why we’ve advocated and cried and protested from every corner” that the disorder is more common among Somali children.
Doesn’t address ‘why’
While the study established a high rate of autism in Somali children, Hewitt said, it was not designed to address some of the pressing “why” questions — such as why autism rates vary so sharply among racial and ethnic groups. Nor did it address some of the persistent fears in Minneapolis’ growing Somali immigrant community about the origins of autism in their children.
Some in the community believed that autism was only a problem among children born in the United States, and not among Somali children who moved here with their parents. Hewitt said that wasn’t addressed by this study, but that researchers have birth record data to address that question next. The report also didn’t address fears among some in the community that pediatric vaccines were somehow to blame.
The study did find that children of all races and ethnicities in Minnesota aren’t assessed for an autism diagnosis, on average, until they are 5. That is late considering that the disorder can reliably be detected by age 2.
A call for more research
Minnesota now needs to do more to research the causes of the disorder and to spread awareness so conditions are diagnosed and treated earlier, said Dr. Ed Ehlinger, state health commissioner.
“We know that they can develop coping mechanisms and they can develop skills,” he said. “Even though it won’t lessen the severity of their autism, they’ll find ways to deal with it much better” if treatment starts earlier.
Abdull, who serves on a federal autism advisory panel, said it is easy to spot the nonverbal Somali children who are at risk for autism. But for years, Somali families have felt ashamed by a disorder that is poorly understood. The Somali language doesn’t even have a word for autism, or really describe the nuances of mental disorders.
As one anonymous parent said in the U study, “In our culture, you are either sane or you are crazy; there is no gray area. So there is a fear that someone will call your child a name behind your back.”
Abdull speaks openly about her son’s autism and about the educational software on an iPad that helps him learn and cope with the nonverbal nature of his disorder. She said she hopes that the U study will validate the problem for others and make them feel more comfortable about seeking screening and treatment services for their children.
“With our kind of autism, you can’t miss it with a 10-foot pole. Anyone can diagnosis it” in Somali children, she said. “A lot of these kids are smart. We just have to figure out a way to communicate with them and teach them by other means.”