Enhancing Public Health Surveillance of Autism Spectrum Disorder through the Autism and Developmental Disabilities Monitoring (ADDM) Network

Since the early 1990s, the number of children identified with autism spectrum disorder (ASD) has risen markedly. The uncertainty regarding the cause of this increase and the pressing need for medical and educational services among this growing number of children has created a substantial level of concern among researchers, educators, policy makers, advocacy groups and the general public. The Autism CARES Act of 2019 authorized CDC to continue conducting epidemiological studies of ASD among children and the federal budget includes money for CDC to conduct ASD surveillance and research. Accurate and current data continue to be urgently needed, and CDC and its public health partners continue to provide the best available community-level estimates of ASD prevalence, progress in early ASD detection, along with other critical information regarding the characteristics, co-occurring conditions, and functional level of children with ASD. Previous data have suggested that current ASD identification varies by sex, race/ethnicity, socioeconomic status, and geographic location. Therefore, data from these subgroups and from diverse communities provide valuable information about whether previously observed disparities in ASD identification continue to persist. These findings can be used to develop policies, measure progress in timely ASD detection and service provision, and inform programs--such as Learn the Signs. Act Early. -- to improve health equity. There has been substantial interest among ASD stakeholders in obtaining more information on the characteristics of ASD among adolescents, including services related to the transition to adulthood. In response, the ADDM Network began monitoring ASD among 16-year-old children that were previously ascertained by ADDM at age 8 in some sites. Data collected by the ADDM Network can provide unique population-based information on transition planning, the planned trajectory (e.g., employment, independent living, education) for the immediate post-high school years, as well as detailed data on the changing situation (diagnostic practices, child characteristics, services available) of persons with ASD as children grow. This will be the 6th funding cycle for ADDM Network activities. During the previous cycle, the ADDM Network underwent several extensive changes and modernization efforts to improve the program's timeliness, efficiency, and focus on public health practice. Notably, it resulted in the expanded data collection of early ASD identification among 4-year-olds to all ADDM sites, monitoring 16-year-olds with ASD at some sites, and expanded the types of data sources that can be integrated into the ADDM Network (such as Medicaid and/or early childhood data systems).