Autism Prevalence Is Higher For Somali Preschoolers

Ruzanna Harutyunyan's picture
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Somali children in Minneapolis have been receiving preschool special education services for Autism Spectrum Disorder (ASD) from the city’s public schools at higher rates than other children, according to a new study by the Minnesota Department of Health (MDH).

MDH officials emphasized that the study only measured “administrative prevalence” – the rate at which all children aged 3 and 4 in Minneapolis were taking part in school-based preschool programs for ASD. The scope of the study did not include calculations of the “true” population prevalence of ASD – the percentage of all Somali or non-Somali children who have ASD.

The study also found that the relative difference between Somali and non-Somali administrative prevalence decreased markedly over the three years covered by the study. The study cites a number of possible explanations, but concludes that the reason for the decline is not clear.

In addition to Somali and non-Somali children, the study also looked at black, white, Asian, Hispanic and Native American children. The study report notes that administrative prevalence rates for the Asian and Native American groups were strikingly low, but again the reasons are unknown. The report notes that the reason for these low rates may be important in determining whether administrative ASD prevalence is truly higher in Somali children, or underestimated in other groups of children.

The study used birth certificate data to determine the total number of children in Minneapolis aged three and four during each of three consecutive school years – 2005-06, 2006-07 and 2007-08. MPS administrative data was used to determine the number of children in that age group who were receiving services for ASD in each of those three years.

That information was then used to estimate the administrative prevalence – that is, the prevalence based on eligibility to receive ASD services for all groups of children included in the study. Several administrative prevalence estimates were calculated using different sets of assumptions. Estimates ranged from 0.27% to 0.78% for all children, 0.21% to 0.72% for non-Somali children, and 0.93% to 1.54% for Somali children.

MDH initiated the study in response to concerns raised last summer that a disproportionate number of the students participating in MPS preschool programs for ASD were Somali. Results of the new study are consistent with those earlier reports, but the new data provide a much more complete picture of the issues involved, according to Dr. Sanne Magnan, Minnesota Commissioner of Health.

“Members of the Somali community and others observed a higher percentage of Somali children in special education programs for ASD, and they quite appropriately were concerned,” Commissioner Magnan said. “With that information in mind, we began our study to understand the situation. Children may or may not be in a particular ASD program for a variety of reasons, and what’s happening in a particular program may or may not accurately reflect what’s happening in the larger community. There are many unknowns about autism, and this study is helping to shine a light on a very complicated but very real issue for affected children and parents.”

Commissioner Magnan emphasized that the scope of the new study was directed at understanding prevalence. It did not attempt to identify potential causes of autism, and it focused exclusively on children in Minneapolis. Children from elsewhere in Minnesota or the U.S. were not included.

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Judy Punyko, state maternal and child health epidemiologist, and lead author of the study, emphasized that the study should be seen for what it is: a first step in understanding and responding to the questions about the prevalence of ASD in the Somali community.

“Like most states, we do not have the kind of surveillance system that would allow us to identify all children with ASD,” Punyko said. “Without that information, we cannot calculate the overall autism rate – or population prevalence – based on an accurate count of how many children in the entire population have ASD.”

“The new study doesn’t come close to answering all of the questions people have about autism,” Dr. Magnan said. “This effort should help to provide a firm scientific foundation for work that remains to be done.”

The study included a number of recommended “next steps” for MDH, the Somali community, researchers, health and education professionals, and others. Those recommendations include the need to explore:

* The feasibility of establishing an ASD surveillance system in Minnesota.

* The possibility of estimating the administrative prevalence of ASD for other parts of Minnesota and the U.S. with large Somali populations.

* Prospects for conducting follow-up analyses of issues raised in the course of doing the administrative prevalence study.

* Efforts to learn more about how children come into the system and whether there are cultural differences in how behavioral and developmental problems are addressed.

The study report also recommends that MDH continue working with the Somali community to improve access to culturally competent, coordinated care, and working with physicians and health care providers to ensure that they have appropriate tools and resources for diagnosing and referring children with ASD. The report calls for efforts by MDH and its partners to provide all families in Minnesota with access to information about child development and available resources for children with special health care needs.

ASD is a group of developmental conditions characterized by impaired social skills and communication, and unusual repetitive or stereotyped behaviors. There is no physical or laboratory test – the condition is diagnosed by observing behavior. Symptoms can be subtle and vary widely in severity.

Common symptoms can include lack of eye contact, lack of response to hearing one’s name, lack of communicative gestures, repetition of the speech of others (echolalia), repetitive motions with hands, arms, or other body parts, strong adherence to routine, and interest restricted to particular objects or topics. At 15-18 month of age, about 25 to 30 percent of children with ASD may lose previously attained social and communication skills, either suddenly or gradually.

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