Autism spectrum disorder (ASD) is one of the fastest growing developmental disabilities in the United States and is no longer a low incidence disability. Support needs of children with ASD range considerably, and disparities in identification and service receipt persist. High-quality, timely surveillance can inform policies to address current and future needs for individuals with ASD.
MNADDM has successfully completed ADDM Network surveillance activities for the past 8 years. We have contributed unique prevalence data on MN cultural communities, including Somali children, and we have established close partnerships with data partners and community stakeholders. The proposed MNADDM prevalence project will maintain and expand upon trends identified in MNADDM 2019-2022. MNADDM has support from major state agencies to explore linkages to statewide data systems within both education and health. The purpose of this application is to estimate prevalence of ASD in a defined geographic region containing a culturally diverse population. We will 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 and geographic areas; 3) explore opportunities to link MNADDM data to larger statewide data systems and; 4) 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, 8, and 16-year-olds, this project will review records from both education and health source records. Collaboration with the Minnesota Department of Health (MDH), Minnesota Department of Education (MDE), Minnesota Department of Human Services (DHS), school districts, and clinic sources are confirmed (see letters of commitment). The MDH Commissioner has provided a letter of commitment delegating sentinel surveillance authority to the University of Minnesota (UMN) team to gain access to health source records including personally identifiable information (PII). We have a signed data agreement from one school district, with letters of commitment agreeing to participate in Study Years 2022 and 2024 from six additional districts and charter schools, including four of the five largest districts in Minnesota. We have letters of support with all three state agencies to begin discussions on access to large statewide datasets of education and Medicaid records. Further we have an eager and supportive community advisory committee that will guide outreach and dissemination efforts and assist us with formative review to ensure our work plan and evaluation plans are effectively implemented.
The University of Minnesota offers substantial infrastructure and support to enable this project to be completed in a timely and successful manner. Project staff have vast experience in ADDM methodology, ASD and other neurodevelopmental disabilities, in conducting projects to estimate population--based prevalence, in specific community outreach and dissemination activities, including a longstanding partnership with the CDC Act Early Ambassador to Minnesota.