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

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Abstract

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.

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Acknowledgments

The authors would like to acknowledge the grandparents who participated in this research, Bonnie Gillman of the Grandparent Autism Network who helped to develop the survey, and Autism Speaks and The Association for the Advancement of Retired People (AARP) for their assistance with recruitment.

Author Contributions

JLH performed qualitative and quantitative analysis of the data, and drafted and helped to revise the manuscript. MCW performed qualitative analysis of the data, and helped to draft and revise the manuscript. CMA conceived and designed the study, coordinated data acquisition, performed qualitative analyses, and helped to draft and revise the manuscript. All authors read and approved the final manuscript.

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Authors and Affiliations

  1. Berks College, The Pennsylvania State University, Penn State Berks, Franco 119, Tulpehocken Road, Reading, PA, 19610, USA

    Jennifer L. Hillman & Michele C. Wentzel

  2. College of Health Professions, Towson University, 8000 York Road, Towson, MD, 21252, USA

    Connie M. Anderson

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  1. Jennifer L. Hillman
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  2. Michele C. Wentzel
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  3. Connie M. Anderson
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Correspondence to Jennifer L. Hillman.

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Hillman, J.L., Wentzel, M.C. & Anderson, C.M. Grandparents’ Experience of Autism Spectrum Disorder: Identifying Primary Themes and Needs. J Autism Dev Disord 47, 2957–2968 (2017). https://doi.org/10.1007/s10803-017-3211-4

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