The Experience, Contributions, and Resilience of Grandparents of Children With Autism Spectrum Disorder

ABSTRACT: Autism Spectrum Disorder (ASD) affects 1 in 68 children in the United States and has been associated with significant stress on nuclear families. Little is known about the grandparents of these children, however, including their first-person, intergenerational experience and potential family contributions. A national, online survey of 1,870 grandparents of grandchildren with ASD revealed that they make significant monetary contributions toward therapeutic needs and frequently play an essential caregiving role. Forty-three percent of the grandparents reported making personal sacrifices such as drawing upon their retirement funds or putting off retirement, and 25% of the grandparents moved or combined households to support a grandchild on the autism spectrum. Consistent with resilience theory, the majority of grandparents reported that they were coping fairly or very well in relation to their grandchild’s ASD, although they did express significant worry for their adult son’s or daughter’s well-being. However, 12% of grandparents reported that they were coping poorly. Recommendations for future research and public health policy are provided.