Autism and the Somali Community — Report of Study
In 2008, Somali parents and others in the Twin Cities raised concerns about disproportionally high participation rates of Somali children in a preschool program for children receiving Autism Spectrum Disorder (ASD) special education services as compared to the overall percentage of Somali children in the city’s public schools. The program, the Early Childhood Special Education (ECSE) Citywide ASD Classroom Program, is operated by the Minneapolis Public Schools (MPS). The Minnesota Department of Health (MDH) shared the community’s concerns about a possible elevation in ASD rates in Somali children and agreed to study the occurrence of ASD among preschool–age Somali children in Minneapolis. This study did not attempt to identify possible causes or risk factors for ASD.
Minnesota does not have a public health surveillance system that will inform us about the actual occurrence – the population prevalence – of ASD in Minnesota, including in the Somali population. Therefore, the study involved analyzing special education data, known as administrative prevalence, about the number of children who are eligible to receive ASD services and are participating in ECSE programs. Administrative prevalence only tells us about who in the population is participating in the MPS ASD programs. It does not tell us about who in the population has ASD (population prevalence).
What the Study Found
There were a number of significant scientific challenges in using administrative data to try to analyze this situation. Nonetheless, the study found that:
- Administrative prevalence of Somali children, ages 3 and 4, who participated in the MPS ECSE ASD programs was significantly higher than for children of other races or ethnic backgrounds. This is consistent with what families and others observed. Because of the study’s limitations, it is not proof that more Somali children have autism than other children; however, it does raise an important question of why Somali children are participating in this program more than other children. In addition, it is not known whether this is because: 1) there is truly a higher rate of autism among Somali children, 2) there is better outreach to Somali families compared to other children, 3) whether non-Somali children that are identified as having ASD use services outside of the school system, or 4) due to other reasons.
- Differences in administrative prevalence rates between preschool Somali children and preschool children of other races and ethnic backgrounds decreased markedly over the three year period. It is unclear if this is: 1) an identification issue, 2) a change in parental awareness for the need for developmental screening, 3) whether Somali children improved over time and therefore no longer needed services, 4) whether more non–Somali children were being identified as needing services, or 5) there were other reasons.
- The proportion of preschool Asian and Native American children, ages 3 and 4 participating in the ECSE ASD programs was strikingly low compared to other children. It is not known whether this is because: 1) there are fewer Asian and Native American children who have ASD, 2) there is less effective outreach to these children, 3) they are using services outside of the school system, or 4) due to other reasons. This seemingly low prevalence rate among Asian and Native American children may artificially boost the comparative rate among Somali children, distorting a true understanding of all groups involved.