SEED Follow-Up

Our healthcare system does not have enough information about how people with ASD develop over time from childhood to adolescence and adulthood. This makes it hard to provide the services and supports they need to thrive. To address this gap, in 2021 CDC funded SEED Follow-Up. The goal of SEED Follow-Up is to better understand ASD as children become adolescents and young adults. CDC hopes to use this information to improve the health and functioning of individuals with ASD as they mature.

To accomplish this goal, SEED Follow-Up is surveying families of children who were previously in SEED 1, 2, and 3 (when they were 2–5 years of age) when they are 8-21 years of age to learn more about them through adolescence and young adulthood. CDC hopes to enroll more than 4,500 families and their children, including more than 1,500 with ASD, into the SEED Follow-Up.

The SEED Follow-Up includes the following topics:

  • Healthcare needs and utilization
  • Community and social supports
  • Bullying and discrimination
  • Safety and risk of suicide
  • Everyday living skills
  • Transition from high school
  • Employment and vocational training
  • Quality of life and interpersonal relationships
  • Family and financial support needs

SEED Follow-Up Sites

Data will be collected across eight sites. CDC has funded five research universities/partners to collect data at sites in six states.

States covered:

Study sites:

  • University of Colorado Denver (SEED 1-3)
  • Johns Hopkins University (SEED 1-3)
  • University of North Carolina at Chapel Hill (SEED 1-3) — also collecting data from participants in Pennsylvania
  • Washington University at St. Louis (SEED 3)
  • University of Wisconsin System, Board of Regents (SEED 3)

CDC serves as an intramural study site – collecting data from participants in Georgia and California.

SEED Follow-Up Research Method

SEED Follow-Up uses a longitudinal method. This means that SEED Follow-Up is enrolling participants who previously completed SEED 1, 2, or 3 so we can look at changes over time. The SEED Follow-up Study will also provide information on how people with ASD differ from those with other developmental delays or disabilities and from the general population at key points in life—childhood, adolescence, and young adulthood. Data collection is occurring from 2023 to 2026.

Some children who participated in SEED 1-3 may also be eligible for in an in-person evaluation of learning abilities in Colorado and Maryland. This evaluation is similar to the one given when children were 2-5 years of age and will help us learn how abilities change over time. Like the first evaluation, we will measure verbal and non-verbal abilities compared to other people the same age.

2023 Community Report on Autism. The latest ADDM Network Data