Table of Contents

Overview

The Minneapolis Somali Autism Spectrum Disorder Prevalence Project was developed to answer the question, “Is there a higher prevalence of ASD in Somali children who live in Minneapolis versus non-Somali children?” The project looked at information on children who were between the ages of 7 to 9 during the year 2010. At least one parent was required to have been a resident of Minneapolis in 2010.

Project activities included —

Review of school and medical records.

Review of the child's records by a clinician reviewer (such as a clinical psychologist) to determine if the child meets the ASD definition used in this project.

Community collaboration regarding the project and its importance.

This project was funded by the Centers forDisease Control and Prevention (CDC), the National Institutes of Health (NIH), and Autism Speaks, and it was managed through the Association of University Centers on Disability (AUCD). The project began in July 2011, and was completed in December 2013. The findings are presented in the Community Report which you can view by clicking on the link provided on this page.

Project documents

Somali Translated Learn the Signs Act Early Materials Somali Milestone Brochure Somali Milestone Booklet

Videos/Podcasts About ASD in the Somali Community Aragtida Waalidka (“Parents’ Views.”) A Somali parent shares her experiences and knowledge to help connect other parents with resources on autism. Waa Maxey Autism (“What is Autism or Autism Spectrum Disorder?”) This video covers facts about ASD, including signs and symptoms and behavior challenges. Helitaanka Xanaada (“Current treatments for Autism Spectrum Disorder.”) A Somali parent discusses current treatments and interventions for individual with ASD.



In the news

Q&A About Minneapolis Somali Autism Spectrum Disorder Prevalence Project

Overview:

The University of Minnesota was funded to answer questions about the number of Somali and non-Somali children with autism spectrum disorder (ASD) in Minneapolis. Below are key findings from this project.

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 many challenges in identifying autism spectrum disorder in small, ethnically diverse groups.

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 today is that children and families living with autism spectrum disorder 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 make improvements so that all children in Minneapolis are identified and connected to appropriate services and supports as soon as possible.

The most important thing for parents to do is to act quickly whenever there is a concern about a child’s development:

Talk to your child’s doctor about your concerns as soon as possible.

Call your local early intervention program or school system for an assessment.

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? No. 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. What are possible next research steps? We do not know why Somali and White children had more autism spectrum disorder than Black and Hispanic children in Minneapolis. More research is needed to understand how and why autism spectrum disorder affects Somali and non-Somali children and families differently. We also do not know why Somali children with autism spectrum disorder were more likely to also have intellectual disability than other children with ASD. Further research can build upon this finding to better understand this difference using different types of studies.

General questions:

What is autism spectrum disorder? Autism spectrum disorder (ASD) is a developmental disability that can cause significant social, communication, and behavioral challenges. Symptoms of ASD appear in early childhood. It is usually a lifelong disorder, although symptoms change over time and with development. People with ASD have a different way of understanding and reacting to people and events in their world. These differences are caused by the way their brains process information. Why do we need to know how many children have ASD? Knowing how many children have autism can help communities develop realistic plans to support these children and their families. Resources required include therapies, specially trained teachers, diagnosticians, health care providers, and related service professionals. 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. What was the project goal? Overall, the project goal was to answer this question: Is there a higher prevalence of autism in Somali vs. non-Somali children who live in Minneapolis? Several related research questions were also developed. These are presented in the project’s Community Report. Why focus on the Somali community? This project was focused on autism among Somali children because of community questions around the number and characteristics of Somali children compared with non-Somali children. In 2008, community concerns arose in Minneapolis about an unexpectedly high number of Somali children in an autism pre-school program. The Minnesota Department of Health confirmed that 2 to 7 times more Somali children were enrolled in the program than non-Somali children, although this study had several limitations.

In October 2010, the Interagency Autism Coordinating Committee requested that federal agencies support additional autism activities in Minneapolis.

In 2011, CDC, NIH, and Autism Speaks funded the University of Minnesota to examine whether autism spectrum disorder is more common among children of Somali descent compared to children of other racial and ethnic groups using CDC’s method for tracking autism spectrum disorder. What data were used to determine the results? This project adopted CDC’s method for estimating the prevalence of autism spectrum disorder among children in a community. Project staff looked at information on children who were between the ages of 7 and 9 during 2010. At least one parent had to be a resident of Minneapolis in 2010. We collected information from children’s records at community sources that educate, diagnose, treat, and provide services to children with developmental disabilities. Specifically, we reviewed records for documented signs and symptoms related to autism and abstract relevant information from these records. A panel of expert clinicians then reviews all information for a given child to determine if that child meets our tracking system’s autism classification, which is currently based on DSM-IV-TR criteria. The information from all children’s records was collected and reviewed the same way using the same criteria. How have quality and accuracy of results been ensured? Established protocols have been followed in the planning, gathering, and analysis of all data. Specifically, the standard criteria used as part of the ADDM Network method ensures that all records are evaluated and reviewed the same way and all children are defined as having ASD using the same definition. CDC, NIH, and Autism Speaks have monitored the project throughout its duration to ensure adherence to CDC methods. What role has the Somali community had in the project? The U of M has involved the Somali community since the beginning of the project through use of a community advisory group. It included Somali parents, advocates, health care professionals, and others who care deeply about the community and results of this project. The advisory board assisted the project staff in understanding how to best reach the Somali community, learning what is important to the community and in better understanding how ASD is affecting individuals and families in the community. In addition, Somali community facilitators were hired to be part of the project and work directly with the Somali community. The project was introduced at community meetings, mosques, Somali run television and radio shows, Somali newspapers, and websites, as well as through informal community gatherings. In addition, the research team included a Somali community leadership liaison who served as a bridge between the community advisory group, the community facilitators, and the research team. This person attended research team meetings and shadowed some of the data collection process.

Early Intervention Services

Diagnosis and Assessment

Intensive Intervention Providers

ABA providers in greater Minnesota

Advocacy and Information

Contact autism@umn.edu