Autism Spectrum Disorder (ASD) is a common disorder associated with enormous societal costs, both in terms of dollars as well as human experience. Rigorous epidemiological and surveillance methodologies have elucidated several factors contributing to dramatic increases in ASD over the past three decades. However, significant scientific uncertainty remains. Due to the lifespan medical, educational, service and support needs of this population, accurate prevalence estimates across not only populations but also subgroups are essential to better understand this critical public health issue and meaningfully address concerns of individuals, families, communities, and systems of care affected by ASD. Further, given evidence that early intervention contributes to short- and long-term gains in functioning, identifying children as early as possible is a priority for ensuring that they receive appropriate services. Understanding prevalence from childhood through adulthood enables service stems to plan and allocate resources, supporting our ability to track community and national goals aimed at reducing the age of detection and promoting lifelong well-being of individuals with ASD. This proposal will support a Centers for Disease Control and Prevention (CDC) Autism and Developmental Disabilities Monitoring (ADDM) network site in Tennessee (TN) within the Treatment and Research Institute for Autism Spectrum Disorders (TRIAD) at Vanderbilt University Medical Center (VUMC) aimed at accurate, efficient surveillance of ASD among 8-year-olds and 4-year-olds. The TN ADDM site will continue ongoing work (i.e., this would represent the third funding cycle for ADDM activities in TN; granted authority for 8-year-old surveillance in 2015; granted authority for expanded surveillance of 4-year-olds in 2019) to conduct rapid, rigorous ADDM-defined surveillance of a target area in the Middle TN region to better understand ASD prevalence among 4- and 8-year-olds. The targe
ted surveillance area will enhance our understanding of prevalence of early identification, provide large enough numbers to better understand traditionally under-represented and under-ascertained groups, and afford complete geographical continuity with our previous ADDM surveillance by maintaining the same contiguous geography from earlier ADDM cycles. The application also embeds a site Community Data for Action plan that engages state health, education, service, and policy leaders in order to conduct surveillance capacity monitoring and tailor meaningful education and outreach activities for our community partners. Education and outreach activities will leverage a powerful existing training and communication infrastructure at TRIAD and VUMC in order to design activities aimed at increasing access to services for individuals with ASD across lifespan with a specific emphasis on better reaching traditionally underserved populations in our state. The current TN ADDM site application will contribute to specific short-term outcomes related to increased knowledge of ASD prevalence, ascertainment methodology, and stakeholder engagement. Ultimately, this will enhance our scientific understanding of ASD, decrease disparities in service delivery, decrease the age of accurate identification, and help improve policies and plans that address ASD research agendas and services. Our proposed TN ADDM site team possesses all the requisite content, methodological, and administrative expertise necessary for conducting all components of the multi-source surveillance of ASD utilizing a record review methodology. Further, our organizational resources, health and educational source record access infrastructure, access to Part C and Medicaid data structures, and powerful longstanding relationships with the primary stakeholders in this work uniquely position our site to make an outstanding contribution to the ADDM network.