Autism spectrum disorder (ASD) remains one of the fastest growing developmental disabilities in the United States (Centers for Disease Control and Prevention [CDC, 2018]), with approximately one in 59 children is identified with ASD (Baio et al., 2018). The concern over increased ASD prevalence, combined with growing public awareness, has highlighted the need for a better understanding of the prevalence, characteristics, and age of identification of children with ASD in U.S. communities. The University of Minnesota (MN) has a strong track record of studying ASD prevalence, specifically addressing concerns that Somali children have a higher prevalence and severity of ASD than other groups (Hewitt et al., 2016; Esler et al., 2017). In 2015, MN joined the CDC’s ADDM Network and conducted a multi-source (education + clinic source), records-based public health surveillance project to monitor the prevalence of ASD and ID in 8-year-old children within Hennepin and Ramsey counties. The proposed MNADDM prevalence project will add Anoka to these counties, which will result in a wider variety of geographic areas and larger numbers of children from diverse cultural and socioeconomic backgrounds to validate and expand upon the trends identified in Study Years 2014-2016.
The purpose of this application is to estimate prevalence of ASD in a defined geographic region containing a culturally diverse population. We intend to employ validated, systematic surveillance methods developed by the ADDM Network to: 1) calculate population-based estimates of the prevalence and characteristics of 4 and 8-year-olds with ASD; 2) identify disparities in prevalence, characteristics, and timing of diagnosis across age, demographic groups (including Somali and Hmong), and geographic areas; and 3) continue and expand community engagement activities to disseminate information on findings to increase the use of ADDM data to inform policy, research, and resource decisions.
To identify population--based estimates for 4 and 8-year-olds, this project will review both education and clinic source records. Collaboration with the Minnesota Department of Health, Minnesota Department of Education, school systems, and clinic sources are confirmed (see letters of commitment). The Minnesota Department of Health Commissioner has committed to delegating sentinel surveillance authority to the University of Minnesota team to gain access to clinic source records (replicating the procedure that was conducted in Study Years 2014 and 2016). We have an eager and supportive community advisory committee that will guide outreach and dissemination efforts as well as assist us with formative review to ensure our work plan and evaluation plans are effectively implemented.
The University of Minnesota’s Research and Training Center on Community Living offers substantial infrastructure and support to enable this project to be completed in a timely and successful manner. Project staff has vast experience in ASD and other neurodevelopmental disabilities, in conducting projects to estimate population--based prevalence, and in specific community outreach and dissemination activities regarding minority and immigrant populations.