Findings from the Minneapolis Somali Autism Prevalence Project

Background:   The Minneapolis Autism Spectrum Disorder Prevalence Project is the largest project to date that has looked at the number and characteristics of Somali children with autism spectrum disorder (ASD) in any U.S. community. The project focused on comparing Somali and non-Somali children in Minneapolis to respond to community concerns about ASD in the Somali community.

Objectives: The 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?”  Expanded research questions included investigating where children with ASD were more likely to be identified, at what age were children with ASD more likely to be classified, and determining if children with ASD had a co-occurring intellectual disability. Comparisons were made between Somali children and children not of Somali descent.

Methods:  The project adopted methodology from the Centers for Disease Control and Prevention’s Autism and Developmental Disabilities Monitoring Network (ADDM).  There were two phases to the research.  In the initial phase, health and special education records were systematically reviewed to identify children with ASD behaviors.  The abstracted information was then reviewed by trained clinicians to determine if the child meets the definition of ASD using the DSM-IV-TR criteria.

Results:  Results indicate that Somali (1 in 32) and White (1 in 36) children were about equally likely to be identified with ASD.  Somali and White children were more likely to be identified with ASD than Black and Hispanic children.  In addition to information on autism prevalence, data on intellectual disability was collected.  Among those children confirmed with autism spectrum disorder, all Somali children on whom intellectual data were available were found to have co-occurring intellectual disability (ID).  The age at first ASD diagnosis was around 5 years for Somali, White, Black, and Hispanic children. In confirming cases, a panel of experts reviewed records and determined case status based on information contained in records, including narrative descriptions of behaviors.  These behaviors are categorized in ADDM methodology as associated features and discriminators.  Associated features are those behaviors that are not part of DSM-IV-TR criteria but that commonly occur with ASD.  Over 80% of children with confirmed ASD were identified with having abnormal mood/affect, argumentative/oppositional, hyperactivity/attention problems, and odd response to sensory stimuli. The most frequent discriminators identified included impaired social skills, previous ASD diagnosis, the need for sameness or routine, and unusual sensory reactions. 

Conclusions:  This study found similar prevalence rates for Somali and White children and lower rates for Hispanic and Black non-Somali children. Rates were unable to be calculated for Asian and Native American groups due to low numbers of children identified with ASD among these groups. Results of this study highlight the need for improved outreach to culturally diverse families to improve identification of ASD. Further work is needed in understanding why Somali children with ASD had such high rates of co-occurring ID.