North Carolina Child Development Survey Cohort 2 (FYI 3.1)

Autism Spectrum Disorder (ASD) is not formally diagnosed before a child is 2-3 years old, but research has identified a wide array of atypical behaviors that can be seen in infants who will eventually receive a diagnosis. We developed a parent-report survey called the First Year Inventory to identify these pre-diagnostic behaviors in 1-year-olds, collected a large sample of normative data, and conducted a longitudinal follow up study. Results indicated that the questionnaire does indeed identify infants who are at-risk for an eventual diagnosis of ASD. The current project updates the screening tool, now called the First Years Inventory (FYI) with modified versions of the original questions plus new questions based on recent research, and it extends the age range to 9-16 months. We have collected normative FYI data from 7,000 families in NC with an infant born in 2013, and followed these families longitudinally to collect additional data at 2 years. The current wave of data collection is to determine diagnostic outcomes for ASD at 3 years.