A long-awaited study has confirmed the fears of Somali residents in Minneapolis that their children suffer from higher rates of a disabling form of autism compared with other children there.
The study — by the University of Minnesota, the Centers for Disease Control and Prevention, and the research and advocacy group Autism Speaks — found high rates of autism in two populations: About 1 Somali child in 32 and 1 white child in 36 in Minneapolis were on the autism spectrum.
The national average is 1 child in 88, according to Coleen Boyle, who directs the CDC’s Center on Birth Defects and Developmental Disabilities.
But the Somali children were less likely than the whites to be “high-functioning” and more likely to have IQs below 70. (The average IQ score is 100.)
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The study offered no explanation of the statistics.
“We do not know why more Somali and white children were identified,” said Amy Hewitt, the project’s primary investigator and director of the University of Minnesota’s Research and Training Center on Community Living. “This project was not designed to answer these questions.”
The results echoed those of a Swedish study published last year finding that children from immigrant families in Stockholm — many of them Somali — were more likely to have autism with intellectual disabilities.
The Minneapolis study also found that Somali children with autism received their diagnoses late. Age 5 was the average, while autism and learning disabilities can be diagnosed as early as age 2, and children get the most benefit from behavioral treatment when it is started early.
Black U.S.-born children and Hispanic children in Minneapolis had much lower autism rates: 1 in 62 for the former and 1 in 80 for the latter.
The study had limitations. The authors did not examine children directly, but reviewed the 2010 clinical and educational records of about 5,000 children ages 7-9 and made estimates.
All the autistic Somali children in the study had IQ deficits, Hewitt said.
Even though the city has Asian and Native-American communities, records for so few of those children were studied that they were not included in the analysis, she added, “but it’s reasonable to extrapolate that autism rates among them are lower.”
Autism rates vary widely across the 14 communities the CDC follows, Boyle said. Alabama has low rates, while Utah’s and New Jersey’s are high.
Generally, said Michael Rosanoff, a director of public-health research for Autism Speaks, white children are the most likely to have an autism diagnosis, but that may be because they are more often sent to diagnostic specialists.
Somali parents in Minneapolis have complained for years that many of their children had autism symptoms — failure to speak, reluctance to look others in the face, screaming and repetitive behaviors. At one time, 25 percent of the children in local special-education classes were Somali, while Somalis represented only 6 percent of the student body.
While some children back home had the same problems children everywhere do, parents said, autism was so unfamiliar that there was no Somali word for it until “otismo” was coined in Minnesota.
“I feel good, actually,” Idil Abdull, a Somali mother of an autistic child who was one of the first to demand an official investigation, said when she heard the results. “I was afraid they were going to say, ‘We don’t see anything.’ And we know that our kids can’t talk.
“Autism is silencing the kids of a nation of poets,” continued Abdull, who has spoken about the issue at the United Nations. “Whether it’s something in our genes and you add it to Minnesota snow or what, I don’t know, but something’s triggering autism. My dad taught me to recite poetry at age 4, and my kid is 11 and he can’t say two sentences. It’s heartbreaking.”
Hewitt and Rosanoff said they want to see more research comparing Somali children with autism to those without, including intelligence testing and genetic workups.