FYI, the Institute on Community Integration Staff Newsletter

December 2013

ICI Project Estimates ASD in Somali and non-Somali Children in Minneapolis

About 1 in 32 Somali children, ages 7-9 in 2010, was identified as having autism spectrum disorder (ASD) in Minneapolis, according to new data just released by the Minneapolis Somali ASD Prevalence Project at the Institute on Community Integration (ICI). Somali and White children were about equally likely to be identified with ASD in Minneapolis (there is no statistically meaningful difference between the two estimates), and Somali and White children were more likely to be identified with ASD than non-Somali Black and Hispanic children.

The Somali and White estimates from Minneapolis were higher than most other communities where the Centers for Disease Control and Prevention (CDC) tracks ASD. The project estimates that overall 1 in 48 children reviewed were identified as having ASD, with the following prevalence by racial/ethnic group:

Somali: 1 in 32
Black (non-Somali): 1 in 62
White: 1 in 36
Hispanic: 1 in 80

(The project was unable to report on Asian/Pacific Islanders and Native Americans due to their low numbers.) Somali children with ASD were more likely to also have an intellectual disability than children with ASD in all other racial and ethnic groups in Minneapolis, according to the findings.

“We do not know why more Somali and White children were identified as having ASD than Black and Hispanic children in Minneapolis,” said Amy Hewitt, director of ICI’s Research and Training Center on Community Living and primary investigator on the project. “This project was not designed to tell us why these differences exist, but its findings support the need for more research on why and how ASD affects Somali and non-Somali children and families differently.”

This project also found that the age at first ASD diagnosis was around 5 years for Somali, White, Black, and Hispanic children. “Children with ASD can be reliably diagnosed around 2 years of age,” said Amy. “Further research must be done to understand why Minneapolis children with ASD, especially those who also have intellectual disability, are not getting diagnosed earlier.”

To date, this is the largest project to look at the number and characteristics of Somali children with ASD in any U.S. community. However, these findings are limited to Minneapolis, and there are challenges in identifying ASD in small, ethnically diverse groups.

In 2008, the Minnesota Department of Health (MDH) – responding to the concerns of Somali parents – conducted a study to find out if Somali children were participating in special education programs for autism in Minneapolis Public Schools at a higher rate. The ICI project was a next step to the MDH study. Funded by the CDC, the NIH, and Autism Speaks, the project reviewed more than 5,000 clinical and educational records of children ages 7-9 in Minneapolis, during the 2010 calendar year. Analysts from the CDC and MDH have verified these findings. The Association of University Centers on Disability also managed this project.

“These new findings can be used to make improvements so that all children in Minneapolis are identified and connected to appropriate services and supports as soon as possible,” said Amy. “We are grateful for the support and participation of the Minneapolis Somali community in making this project possible.”