Longitudinal Studies of Autism Spectrum Disorders
This longitudinal study on people with autism spectrum disorder (ASD) or other developmental delays began in the early 1990s and has followed participants for over 30 years. The study was conducted in two parts. Study 1 recruited over 200 families referred to clinics for potential ASD or non-ASD developmental delays when their children were under 3 years old in North Carolina and Chicago, United States of America. This sample is called the Autism Early Diagnosis Cohort (EDX), and families were followed at ages 2, 3, 5, and 9 years. In Study 2, 40 families from Michigan, United States of America, with ASD or non-ASD developmental delays, subsequently joined the study when their children were 9 years old. All families from the EDX cohort and Michigan cohort have been followed at years 9, 15, 18, 20, 23, 25, and 29.
Study design
Cohort, Cohort - clinical, Cohort - primary caregiver and child
Number of participants at first data collection
213 (study 1 families)
40 (study 2 families)
Age at first data collection
< 3 years (study 1 children)
Varied (study 1 family members)
9 years (study 2 children)
Varied (study 2 family members)
Participant year of birth
Varied (study 1 children)
Varied (study 1 family members)
Varied (study 2 children)
Varied (study 2 family members)
Participant sex
All
Representative sample at baseline?
No
Sample features
Country
Year of first data collection
No information available
Primary Institutions
University of Michigan
Links
nda.nih.gov/edit_collection.html
reporter.nih.gov/project-details/7526642
Profile paper DOI
Funders
Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD)
National Institute of Mental Health (NIMH)
Ongoing?
Yes
Data types collected
- Audio or visual recordings (e.g. of child behaviour, facial expressions)
- Computer, paper or task testing (e.g. cognitive testing, theory of mind doll task, attention computer tasks)
- Interview – face-to-face
- Interview – phone
- Self-report questionnaire – online
- Self-report questionnaire – paper or computer assisted
- Interviews or focus groups
- None
- None
Engagement
Keywords
