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 released by CEHD’s Institute on Community Integration. While Somali and white children were about equally likely to be identified with ASD, both groups 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 autism spectrum disorder. Overall, the research estimates that 1 in 48 children reviewed in Minneapolis was identified as having ASD.
This is the largest research project to date to look at the number and characteristics of Somali children with autism spectrum disorder in any U.S. community.
“We do not know why more Somali and white children were identified as having ASD than black and Hispanic children in Minneapolis,” said principal investigator Amy Hewitt, director of the Research and Training Center on Community Living in the institute. “This project was not designed to answer these questions, and future research is warranted.
“What we know for sure is that children and families living with ASD in Minneapolis continue to need support,” said Hewitt.
“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.”
Researchers included members of the Somali community and community facilitators who worked directly with the Somali community to make sure that families and community leaders were involved and informed.
Late diagnoses and co-occurring intellectual disabilities
In reviewing more than 5,000 clinical and educational records, researchers found that the age at first ASD diagnosis for Minneapolis children was around five years. Somali children with ASD were more likely to also have an intellectual disability (e.g., IQ lower than 70) than children with ASD in all other racial and ethnic groups in Minneapolis.
“Children with ASD can be reliably diagnosed around two years of age,” said Hewitt. “Further research must be done to understand why Minneapolis children with ASD, especially those who also have intellectual disability, are not getting diagnosed earlier.
“Future research can and should build upon these findings to better understand how ASD affects Somali and non-Somali children differently,” said Hewitt, who is pursuing funding for new projects.
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. CEHD’s current research, funded by the CDC, the National Institutes of Health, and the nonprofit organization Autism Speaks, was a next step to the MDH study.
What is a prevalence study, and why do one?
Prevalence is a scientific term describing the number of individuals with a disease or condition among a defined group of people at a specific period in time. In this case, determining the prevalence of ASD helps communities develop realistic plans to support children and their families. Understanding the number and characteristics of children who have ASD is key to promoting awareness of the condition and identifying important clues for further research.
This project, which began in July 2011, looked at information on Minneapolis children who were between the ages of 7 and 9 during 2010. Data collected on children included a review of school and medical records and application of a surveillance definition of ASD by expert clinicians. Specifically, the Autism and Developmental Disabilities and Monitoring (ADDM) Network method, developed by the CDC, was used to track the number and characteristics of children with ASD. This method helps explain if certain groups are more likely to be identified with ASD than others and is ideal for a project such as this one, in which data come from multiple sources in the community.
Adapted from a story by Steve Baker | iStock photo | Spring/summer 2014