This study aims to better understand the experiences of parents and caregivers raising adolescents with intellectual and developmental disabilities (IDD), including autistic adolescents with profound autism, during the transition from adolescence to adulthood. Researchers are interested in learning more about patience, stress, support, caregiver well-being, and parent-child relationships over time as families navigate educational, healthcare, behavioral, and community support systems. Participants will complete an online survey once each year for four years. Each survey will take approximately 45 minutes to complete. A smaller group of participants may also be invited to complete brief daily surveys over a 7-day period and/or participate in a virtual interview about their experiences parenting an adolescent with IDD or autism. No medical procedures or biological specimen collection are involved in this study.
We are recruiting parents and primary caregivers of adolescents ages 11–17 years with intellectual and developmental disabilities (IDD), including profound autism, who live in the United States. Participants may include caregivers of individuals with co-occurring genetic conditions (e.g., Down syndrome, Fragile X syndrome, or other developmental disabilities), although a specific genetic diagnosis is not required for participation. Participants of all genders, racial backgrounds, ethnic backgrounds, family structures, and support needs are encouraged to participate.
03/02/2026 - 06/30/2026
Baylor University's Center for Disability and Flourishing