FIRST WORDS Project: Implementing Surveillance to Determine the Prevalence of ASD at 18 and 30 Months of Age

Amy Wetherby and FIRST WORDS to conduct regional study on autism for the CDC

Accurately determining the prevalence of autism spectrum disorders (ASD) in early childhood is particularly challenging because most children are not diagnosed until late preschool or school-age. Principal Investigator, Amy Wetherby, and Co-investigator, Lindee Morgan, and the FIRST WORDS Project have received funding from the Centers for Disease Control and Prevention to implement a developmental surveillance system to determine the prevalence of ASD in early childhood using a community-based screening and diagnostic protocol. Children will be recruited from a representative population-based sample of over 16,000 children born between April 2006 and March 2010 in 12 contiguous counties in the panhandle of Florida, who will be screened with a broadband parent-report surveillance checklist between 9 and 18 months of age. All children who fail and randomly selected children who pass the broadband screen will be invited to complete an autism-specific screen between 10 and 18 months. Two autism-specific screening tools will be used, one based on parent report and one based on an interactive videotaped systematic observation. Case ascertainment will be based a diagnostic evaluation to confirm or rule out ASD at 18 and 30 months of age with children who fail the autism-specific screen. So far, in preliminary studies using this developmental surveillance system in Leon County, 67 children have been identified to date from a prospective sample of over 6,410 children screened between 6 and 24 months who have received a diagnosis of ASD at 30 months of age or older; 64 received a positive broadband screen and 66 a positive autism-specific screen.

Consultants from the University of Miami and the University of Michigan will support FSU’s efforts to determine the prevalence of ASD at 18 and 30 months and to describe the demographic and developmental characteristics of the sample. Valuable information on the validity of different measures and barriers that may impede use of them in rural, urban and suburban settings will be gained from this study. Finally, strategies to improve the screening and referral process for parents and professionals will be ascertained. Focus groups will be conducted with parents and professionals to seek input on how to improve the screening process and offer better ways to share information about initial diagnosis and access to services.

Dr. Wetherby shares her enthusiasm for the project, “The study will provide important clues about the unfolding of the features of ASD at these very young ages. The findings will have important implications not only for informing biomedical research about the prevalence of ASD but also for better understanding possible risk and protective factors associated with ASD in early childhood.”

FSU gets grant to study autism
Article published Oct 15, 2007

in the Tallahassee Democrat