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, and service 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 systems 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 at Vanderbilt University Medical Center (VUMC) aimed at accurate, efficient surveillance of ASD and ID among 8-year-olds and 4-year-olds. The VUMC ADDM site will continue (i.e., currently have ongoing authorization for 8-year-old surveillance in targeted regions as part of site initiation in 2015) and adapt (i.e., modify authorization to include 4-year-olds not originally a part of site initiation in 2015) ongoing work to conduct rapid, rigorous ADDM-defined surveillance of a target area in the Middle Tennessee (TN) region to better understand ASD prevalence among 4- and 8-year-olds. The targeted 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 within site-analytic plan designed to (a) estimate prevalence of children with ASD from 3-21 years via examination of, and linkage to, large medical and state-level administrative databases, and (b) conduct population-level analyses of service-related outcomes (e.g., diagnostic age, eligibility, interventions received) to investigate potential disparities.
The current VUMC 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 Vanderbilt 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, and powerful longstanding relationships with the primary stakeholders in this work uniquely position our site to make an outstanding contribution to the ADDM network.