Abstract
We know little about custodial grandparents of children with autism spectrum disorder (ASD) who offer a vital social safety net. 117 custodial grandparents of children with ASD from 37 states completed an online survey with open-ended questions about their “greatest challenges and joys” as grandparent. Grounded theory analysis revealed four categories of experience (Issues with Adult Children, Caregiving Burden, Coping, & Wisdom) explained by 15 themes. Grandparents’ stressors encompassed custody issues, ASD problem behaviors like tantrums and eloping, insufficient ASD services, financial burden, 24/7 caregiving demands, social isolation, and fears for the future. Grandparents’ coping included celebrations of progress, unconditional love, faith, and a positive focus. Grandparents’ wisdom included patience and insight. Recommendations to support these caregivers are provided.
| Original language | English (US) |
|---|---|
| Pages (from-to) | 260-269 |
| Number of pages | 10 |
| Journal | Journal of Autism and Developmental Disorders |
| Volume | 49 |
| Issue number | 1 |
| DOIs | |
| State | Published - Jan 15 2019 |
All Science Journal Classification (ASJC) codes
- Developmental and Educational Psychology
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