MN ICI (UCEDD/LEND) Collaborates on Study of Autism in Minneapolis Somali Community

March 13, 2013

Advocates in the Somali community have reported that children of Somali descent living in Minneapolis have, in the past few years, been classified as having Autism Spectrum Disorders (ASD) at a higher-than-usual rate. A preliminary study conducted by the Minnesota Department of Health identified higher rates of Somali children with labels of ASD in Minneapolis early intervention programs. Somali advocates have pressed for answers about what's going on with their children. As one effort to provide answers, the Institute on Community Integration (ICI), the University's Department of Pediatrics and Department of Educational Psychology, and the Minnesota Department of Health are collaborating on a project called, "Do Children of Somali Descent Have Higher ASD Prevalence?"

The goal of the year-long study is to determine whether there are true differences in the prevalence of ASD between Somali and non-Somali children. If there is a higher prevalence, then it may be possible to conduct further research to try to determine why this increased prevalence exists, which may also improve understanding of possible causes of ASD. Additionally, this research could lead to advocacy and policy changes that ensure services and supports are targeted to the needs of the Somali community.

The project is currently in its first phase, which is review of Minneapolis Public School and medical records for all children (Somali and non-Somali) ages 7-9 who have a definite or possible ASD diagnosis, or who have symptoms of ASD. Summaries of their records will be created, and those flagged for further study will be used in a clinical review to confirm that they have met the Centers for Disease Control's criteria for "confirmed ASD surveillance cases." In the final phase, comprehensive clinical evaluations will be conducted of all Somali children identified in phase two, a random sample of non-Somali children from phase two, and a sample of typically-developing Somali children. This will help clarify the differences that may exist between the three groups in relation to performance on ASD measures.

"The University of Minnesota is committed to doing this research because we know the community wants an answer about whether or not there is a higher prevalence of autism among Somali children," says ICI's Amy Hewitt, one of the study's co-Principal Investigators. "The research is being conducted in close collaboration with leaders in the Somali community, and they are providing ongoing guidance about how to best engage community members throughout this important process."

Principal Investigators for the study are Amy Hewitt, Institute on Community Integration, Joe Reichle, Department of Educational Psychology, and Amy Esler, Department of Pediatrics. Judy Punkyo, Minnesota Department of Health, is consulting on the study. The one-year, $400,000 study is funded by the Centers for Disease Control and Prevention, the National Institutes of Health, and Autism Speaks, and is managed through the Association of University Centers on Disability.