Autism Spectrum Disorder (ASD) is a neurodevelopmental disorder that impacts approximately 2.5% of children in the United States. Individuals with ASD experience deficits in social communication, as well as restricted interests and repetitive behavior; but the severity and patterns of differences vary greatly across individuals and result in significant lifelong impairment for some. We are still learning how the presentation of ASD changes from early childhood into adolescence or adulthood. Causal mechanisms of ASD are an active area of investigation, though substantial evidence supports the contribution of both genes and environmental factors.
The Study to Explore Early Development (SEED), funded by the Centers for Disease Control and Prevention (CDC), was a large case-control study of children ages 2-5 years and their families implemented across eight states over three phases. SEED investigators collected detailed data on children’s core ASD symptoms, cognitive status, and presence of co-occurring conditions in early childhood, along with risk factors related to maternal health and the perinatal environment. Blood and/or saliva samples were also collected for genomic data . The SEED sample includes 2044 children with ASD, 1950 children with non-ASD developmental disabilities (DD), and 2285 population control children (POP), making this the largest etiologic study of ASD in the US.
In 2018 Washington University in St. Louis, in collaboration with colleagues at the University of Missouri Thompson Center and Children’s Mercy Hospital in Kansas City joined the SEED Network (MO SEED) for the third wave of data collection and the COVID-19 Impact Study.
SEED Follow-Up Studies is maximizing the impact of extant SEED data through analyses that characterize ASD phenotypes and assess the potential interplay between genetic and modifiable risk factors. SEED Follow-Up Studies is also facilitating new data collection from SEED participants in middle childhood (SEED 3), adolescence (SEED 2) and early adulthood (SEED 1) to characterize changes in ASD phenotypes across developmental stages and the associated health, educational, and service needs across the early life course.
The MO SEED Team, at Washington University and Children’s Mercy Hospital in Kansas City, is participating in SEED Follow-Up Studies. The knowledge gained by SEED Follow-Up Studies will enhance our ability to support individuals with ASD and their families to promote optimal wellbeing through early adulthood.
