Autism Prevelence and Immigrent groups

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The autism diagnosis that followed left Gboro feeling surprised and uncertain.

“My first reaction was that I didn’t get it,” says Gboro. He had been a physician in the Congo and knew about autism, but had seen few children with the condition before his son was diagnosed. “In our culture, kids are different; some are active, some are quiet … I really didn’t see that coming.

Some teams are trying to develop or assess screening tools tailored for certain ethnic groups in the U.S. and elsewhere—for example, a picture-based tool for use in Sri Lanka—and these efforts may lead to more accurate numbers among different populations. If the figures reveal true differences in prevalence among these communities, they might offer clues about the potential causes of autism. The vast majority of research on autism today, after all, is limited to mostly white and middle-class families. At the very least, getting a better handle on prevalence may help identify populations with the greatest needs for culturally adapted services.

When the autism diagnosis came, Gboro knew what it meant in his community. Some Congolese people, even those who have been in the U.S. for years, refer to autism as a ‘curse.’ Some are even more fatalistic. “They say, ‘It’s just a disease that God gives you and you cannot do anything about it,’” Gboro says. Social ostracism often follows, isolating families with a child on the spectrum. As a result, he says, many Congolese children on the spectrum are never screened or diagnosed and miss out on early intervention—the only thing known to help. The families also miss out on social support—an outcome Gboro says his family has been able to avoid by being selective about where they go and with whom they spend their time.

Those kinds of problems play out well beyond the Congolese community in the U.S. About one in four children in the U.S. has parents who are immigrants. The official estimate for autism prevalence nationwide, based on educational and medical records, is 1 in 68. But it’s still not clear how accurate those numbers are for any groups. And individual states report wide-ranging numbers — from 1 in 93 in Wisconsin to 1 in 58 in Utah.

Some of the most high-profile research in any immigrant group has focused on the Somali community in Minnesota, where concerns first cropped up about a potential ‘autism cluster’ around 2008. At that time, the Minnesota Department of Health began looking into what seemed like a disproportionately large number of Somali-American children being flagged for special-education programs in city-funded preschools.

Based on data from 2010, the department estimated that 1 in 32 Somali children in Minneapolis had autism. This number is not much different than the estimated 1 in 36 white children with autism in the city. But both rates are considerably higher than those in non-Somali black children (1 in 62) or Hispanic children (1 in 80) in Minneapolis. The findings were widely covered by local and national media. After that, many Somali-American parents stopped vaccinating their children, which then contributed to a measles outbreak in the city this past April through July.

But the study had major limitations, says lead researcher Amy Hewitt, a disability researcher at the University of Minnesota’s Institute on Community Integration in Minneapolis. For one, the sample size in the study was small, with data on just 255 children with autism out of more than 12,000 children in the schools overall. (Of the total population, about 1,000 children are Somali and 31 of those children have autism.) “The study often gets cited as an international fact or a national fact, and it’s not,” Hewitt says. “It also gets reported as if it were about all Somalis.”