The Minnesota Department of Health and the Somali community began in a dialogue in 2008 related to concerns expressed by the community about the number of preschool Somali children with a classification of autism in the Minneapolis Public Schools. During this process, a need for more information was identified. Information below includes resources and information on autism for Somali families.
- University of Minnesota Minneapolis Somali Autism Spectrum Disorder Prevalence Project
"The University of Minnesota estimates autism spectrum disorder (ASD) in Somali and non-Somali children in Minneapolis."
Largest project to date looks at the number and characteristics of Somali children with ASD in any U.S. community.
This report presents new data released in December 2013 by the University of Minnesota. 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. Somali and White children were more likely to be identified with ASD than non–Somali Black and Hispanic children. For more information go to University of Minnesota Minneapolis Somali Autism Spectrum Disorder Prevalence
Questions about the results:
- How does the prevalence of autism spectrum disorders among Somali children in Minneapolis compare to other groups of children in Minneapolis?
- Somali and White children in Minneapolis were about equally likely to be identified with autism spectrum disorder. Somali and White children were more likely to be identified with autism spectrum disorder than Black and Hispanic children.
The Somali estimate of 1 in 32 compares to 1 in 36 White children, 1 in 62 Black children and 1 in 80 Hispanic children.
Overall, about 1 in 48 children aged 7-9 years in 2010 were identified as having autism spectrum disorder in Minneapolis.
- What other differences appear in the findings for Minneapolis Somali children with autism spectrum disorder?
- Somali children with autism spectrum disorder were more likely to also have intellectual disability than children with autism spectrum disorder in all other racial and ethnic groups in Minneapolis. We don’t know why. Future research could look at whether Somali children with ASD in other communities are also more likely to have intellectual disability, and if so, what might put them at higher risk for having both conditions.
- How does the Minneapolis prevalence data compare to prevalence studies for children in other communities?
- These prevalence estimates are higher than most other communities where CDC has tracked autism spectrum disorder, especially the prevalence estimates for Somali and White children. However, it is difficult to compare the estimates in Minneapolis with the estimates from CDC’s tracking system because they come from different points in time. Also, CDC’s estimate is an average based on 14 diverse communities across the United States, whereas these estimates are based on only one urban community.
More information as needed: In March 2012, CDC reported that about 1 in 49 children in Newark, New Jersey (20.5 per 1,000) and about 1 in 47 children in northern Utah (21.2 per 1,000) were identified as having autism in 2008. These estimates are similar to the overall prevalence estimate from Minneapolis.
CDC does not report estimates for Somali children. The highest estimate reported by CDC based on race/ethnicity is 1 in 25 White children in northern Utah (40.0 per 1,000) in 2008.
- How do these results compare to results of autism prevalence studies in other immigrant communities?
- A study published last year found that children of mothers who migrated to Sweden from Sub-Saharan African were more likely to have autism spectrum disorder and intellectual disability than other children. Our findings are in line with those results and highlight the need for additional research in this area.
- Do we have data to compare prevalence of ASD among children in Somalia to this Minneapolis data?
- How do these estimates relate to the national average?
- These prevalence estimates are higher than most other communities where CDC has tracked autism spectrum disorder, especially the prevalence estimates for Somali and White children. However, it is difficult to compare the estimates in Minneapolis with the estimates from CDC’s tracking system because they come from different points in time. Also, CDC’s estimate is an average based 14 diverse communities across the United States whereas these estimates are based on only one urban community.
What we know for sure is that these children and families living with autism in Minneapolis continue to need support.
The overall prevalence of autism among children in Minneapolis is fairly similar to the parent-reported prevalence of 1 in 50 that was reported in March 2013 by CDC (NSCH). Does that mean this is the true prevalence? We cannot make a direct comparison between these two prevalence estimates. They use different methods, are from different timeframes, cover different age ranges, and cover different geographic areas.
CDC’s estimate of 1 in 50 is based on parent reports representing children aged 6-17 years across the United States from 2011 to 2012. The University of Minnesota’s estimate is based on CDC’s gold standard method for tracking autism and includes only children aged 7-9 from Minneapolis. No matter what, we know that many children and families living with autism in Minneapolis continue to need services and supports.
- What do the project findings tell us about when ASD is being diagnosed for Minneapolis children?
- The age at first ASD diagnosis was around 5 years for Somali, White, Black, and Hispanic children. This means that many children in Minneapolis are not being diagnosed as early as they could be. The average age of first autism spectrum diagnosis was 5 years 3 months for Somali children, 5 years 1 month for Black children, 4 years 8 months for White children, and 4 years 5 months for Hispanic children.
Children with ASD can be reliably diagnosed around 2 years of age. More needs to be done to understand why children with ASD, especially those who also have intellectual disability, are not getting diagnosed earlier in Minneapolis.
- Do these results tell us anything about the reasons for a higher prevalence of ASD for children in Minneapolis?
- These findings tell us that there are differences in the number and characteristics of children with autism spectrum disorder across certain racial and ethnic groups in Minneapolis. The findings do not tell us why these differences exist. These findings support the need for additional research on why and how autism spectrum disorder affects Somali and non-Somali children and families differently. What we know for sure is that children and families living with ASD in Minneapolis continue to need support and that they are not being identified as early as they could be. These new findings can be used to understand where improvements can be made so that all children in Minneapolis are identified and connected to appropriate services as soon as possible.
- A Qualitative Study of Families of Children with Autism in the Somali Community: Comparing the Experiences of Immigrant Groups (PDF)
University of Minnesota, School of Public Health; the Somali, Latino, and Hmong Partnership for Health and Wellness (SoLaHmo), West Side Community Health Services; and the Confederation of Somali Community in Minnesota (CSCM).
- Autism and the Somali Community – MDH Report of Study, 2009
Anyone interested in obtaining the full 2009 MDH report may contact us at 651–201–3650.
- Baaxadda Cudurrada Autismka (ASD's) (PDFs)
- Help Me Grow – 6 Months Somali (YouTube: 5 minutes and 38 seconds)
- Minnesota Department of Health Interpreter Roster
- Parent Education for Somali Americans: Autism. (YouTube: 12 minutes and 31 seconds)