It’s a Battle and a Blessing

The Experience and Needs of Custodial Grandparents of Children with Autism Spectrum Disorder

Jennifer L. Hillman, Connie M. Anderson

Research output: Contribution to journalArticle

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 languageEnglish (US)
Pages (from-to)260-269
Number of pages10
JournalJournal of Autism and Developmental Disorders
Volume49
Issue number1
DOIs
StatePublished - Jan 15 2019

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Social Isolation
Love
Caregivers
Fear
Autism Spectrum Disorder
Grandparents
Safety
Surveys and Questionnaires
Grounded Theory
Problem Behavior

All Science Journal Classification (ASJC) codes

  • Developmental and Educational Psychology

Cite this

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