Minneapolis Somali Autism Prevalence

Background:   The national prevalence rate in the United States for ASDs based on 2008 data is one in 88 (CDC 2102). The prevalence rate in Minnesota for the calendar year 2008 is not known because surveillance was not in place. In 2008, Somali advocates in Minneapolis expressed concerns to the Minnesota Department of Health about more Somali children, ages 3 through 5, enrolled in preschool special education programs for ASD as compared to the overall percentage of Somali children enrolled in the city’s public schools. That study found: the proportion of Somali children ages 3 and 4 who participated in the ECSE ASD program was higher than for children of other races or ethnic backgrounds; the proportion of preschool Asian and Native American children who participated in the ECSE ASD programs was strikingly low, and differences in participation rates between preschool Somali children and preschool children of other races and ethnic backgrounds decreased substantially over the three school years studied. This presentation will share the process and findings of a study funded by the CDC, NIH and Autism Speaks that engaged the Somali community in investigating the prevalence of autism in 7 – 9 year olds in calendar year 2010 using school and clinic records. Examples of community engagement, training and targeted dissemination strategies will be shared. Additionally the overall and Somali prevalence findings from the study will be shared. 

Objectives:

a) Present findings from a prevalence study of Autism Spectrum Disorders (ASD) in the Minneapolis, MN Somali population; b) Discuss ways to engage immigrant communities c) Share targeted dissemination strategies and d) Discuss lessons learned. Presenters will discuss the importance and benefits of community involvement, and the challenges to engagement within a prescribed research methodology.   

Methods:  

This study replicated and augmented the CDC Autism and Developmental Disabilities Monitoring Network (ADDM).While not an ADDM Network site, rising concerns about the prevalence of ASD in Minnesota, and in particular among the Somali population, were the impetus for this study. This study sought to understand the characteristics of children with ASD, and to highlight the impact of ASDs on communities and families.

While the ADDM Network provides information on ASD prevalence, the Minnesota project sought to understand prevalence with specific inquiry into the Somali population.  The community has a strong advocacy presence, and involving representatives from this community and from key provider organizations was a critical component of the project. Engagement occurred in the planning, implementation, and dissemination stages.  Direct community involvement and engagement in project activities is distinct from typical ADDM Network sites, and presenters will discuss the implications implementing the study in this way. 

Results:  

The rsults are not yet public and will be released in November of 2013 (but not in time to include in this abstract). Results will be presented that identify prevalence, case ascertainment, co-occuring conditions and severity of symptoms (for Somali, non Somali and white only).

Conclusions:  

Implications of the findings related to policy, service access and utilization, early identification and further research will be discussed.