The Experience, Accommodations, and Resilience of Grandparents of Grandchildren with Autism Spectrum Disorders
With increased prevalence of childhood ASD, greater numbers of adults are likely to find themselves a grandparent to a child with ASD. Although previous research has typically examined the impact of grandparents upon the adult parents of children with ASD, little is known about the experience of those grandparents themselves.
A primary goal of this study was to fill a gap in the literature regarding the unique experience of grandparents of grandchildren with ASD, from their first person perspective. In accord with resilience theory, it is essential to examine grandparents' accommodations (e.g., the extent to which they make contributions toward their ASD grandchild's general, special, and instrumental needs, and make life choices to support their grandchild) as well as perceptions of familial conflict and concern. Such knowledge will help guide the development of more effective interventions for family members affected by ASD.
Participants were asked to complete anonymously an online survey designed to be completed in approximately 30 minutes and deployed by SurveyMonkey. Participants were recruited via the Kennedy Krieger Institute's Interactive Autism Network's (IAN) Research e-newsletters and the IAN Community website, along with the assistance of the Autism Speaks Foundation, the Grandparent Autism Network, and the American Association of Retired People (AARP).
Criteria for inclusion required participants to live in the U.S. and its territories, and to have at least one grandchild with an ASD. The grandchild had to be the biological, adoptive, or stepchild of the respondent's biological or adopted son, stepson, daughter, or stepdaughter.
A total of 1881 participants completed the on-line survey, including 1534 grandmothers (81.6%) and 347 grandfathers (18.4%), who also identified as maternal (63.4%) and paternal (35.6%) grandparents. In terms of grandparental status, more than half of the respondents were maternal grandmothers (52.3%) followed by paternal grandmothers (29.2%), maternal grandfathers (11.9%), and paternal grandfathers (6.5%).
Results indicated that grandparents made significant accommodations and provided support toward their grandchild's general, special (e.g., Applied Behavioral Analysis; OT; educational programming), and instrumental needs (e.g., babysitting and transportation). Nearly half of the grandparents reported making personal sacrifices to help support their ASD grandchild including putting off their own retirement, becoming their grandchild's primary babysitter, and combining households. Maternal grandparents were more likely to provide instrumental care and make personal sacrifices than paternal grandparents, whereas grandfathers were more likely to provide financial support for their grandchild's special needs than grandmothers. In accord with resilience theory, the majority of grandparents reported that they were coping fairly or very well in relation to their grandchild's ASD, despite expressing significant worry for their adult son or daughter raising their grandchild. Grandparents also reported, on average, experiencing little family conflict in relation to their grandchild's ASD. Approximately 10% of the grandparents did, however, report that they were not coping well with their grandchild's ASD.
Grandparents of grandchildren with ASD appear, on average, to be resilient and make significant accommodations on behalf of their family. Addressing the needs and experience of those grandparents would likely benefit all family members.