Wisconsin Surveillance of Autism and Other Developmental Disabilities System
The purpose of this project is to enhance capacity for ongoing public health surveillance of autism spectrum disorder (ASD) in the United States by participation in surveillance years 2018 and 2020 of the Wisconsin site of the Center for Disease Control and Prevention’s Autism and Developmental Disability Monitoring (ADDM) Network. As part of the ADDM Network, our site, the Wisconsin Surveillance of Autism and Other Developmental Disabilities System (WISADDS), has monitored the prevalence of ASD among 8 year-old children in southeast Wisconsin since 2002 and among 4 year-old children since 2010. The proposed project includes two components: (A) multi-source, active ASD surveillance at ages 4 and 8 years (birth years 2014 and 2016 for 4 year-olds and 2010 and 2012 for 8 year-olds); and (B) follow-up collection of data on functioning, educational status and transition planning at age 16 years of 1,004 Wisconsin children whose records we abstracted for ASD surveillance at age 8 years in 2010 and 2012 (birth years 2002 and 2004). For both components, the target population will consist of a 4-county area within the 10-county WISADDS surveillance area with a diverse population selected to adhere to the requirements and guidelines of funding opportunity CDC-RFA-DD19-1901 (Enhancing public health surveillance of ASD through the ADDM Network). In 2017, this population included 24,212 4 year-old and 24,614 8 year-old children, of whom approximately 53% were white non-Hispanic, 22% were black non-Hispanic, 18% were Hispanic, 6% were Asian or Pacific Islanders, and 1% were American Indian. We propose to collect data from health and school sources within the surveillance area and perform ASD surveillance in accordance with the ADDM Network protocol. At ages 4 and 8 years we will apply DSM-5 diagnostic criteria to identify ASD while at age 16 years, to allow monitoring of the impact of changes in diagnostic criteria over time in a given cohort, we will apply both DSM-IV-TR and DS
M-5 diagnostic criteria. We will continue to conduct and expand our community engagement and outreach activities with the goals of strengthening existing relationships and initiating new relationships as needed with schools, pediatric and developmental service providers, state agencies and autism and developmental disabilities advocacy organizations in Wisconsin. We will also collaborate with ADDM Network scientists in analyzing and disseminating the results at local and national levels. Additional outcomes of this project will include: strengthening of public health surveillance at age 4 years to allow monitoring of progress in early identification of ASD and equitable access to interventions; improved understanding of differences in ASD characteristics by age through comparisons of children aged 4 years, 8 years, and 16 years; ongoing quality improvement to increase the reliability and efficiency of ADDM surveillance; information to support effective public health planning and policies to improve services and outcomes for individuals with ASD; and improved knowledge of trends and disparities in ASD prevalence over time and over the life course between early childhood and adolescence.