Grandparents’ Experience of Autism Spectrum Disorder: Identifying Primary Themes and Needs

Jennifer L. Hillman, Michele C. Wentzel, Connie M. Anderson

Research output: Contribution to journalArticlepeer-review

24 Scopus citations


Limited information is available regarding the first person perspective of grandparents of children with Autism Spectrum Disorders (ASD). In the present study, 1870 grandparents of a child with ASD participated in a nationwide, online, anonymous, 30-minute survey and responded to open-ended questions including their “greatest challenges and greatest joys” as the grandparent of a child on the autism spectrum. A grounded theory approach to qualitative analysis revealed four overarching categories: a Desire for Connection, Barriers to Care, Celebration of Progress, and Personal Reactions. Despite the presence of significant challenges grandparents often experienced positivity in their role, and engaged in radical acceptance of their grandchild as well as transformative insight and advocacy. Specific recommendations are offered to help address grandparents’ needs and capitalize upon their resilience.

Original languageEnglish (US)
Pages (from-to)2957-2968
Number of pages12
JournalJournal of Autism and Developmental Disorders
Issue number10
StatePublished - Oct 1 2017

All Science Journal Classification (ASJC) codes

  • Developmental and Educational Psychology


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