Grandparents of Children with ASD

Background: Raising a child with an ASD is demanding, both emotionally and financially, and high levels of parent distress are reported. Members of the extended family, particularly grandparents, are also affected, yet little is known about the extent of grandparents’ participation in supporting families of children with ASD, or about the impact that having a grandchild with an ASD has on the grandparents themselves. Much of the scant literature that does exist on the topic focuses on grandparents’ views of the child with ASD and of that child’s impact on the parent rather than on the grandparent’s own experience, contribution, or needs.

Objectives: The current study explores the impact of having a grandchild with an ASD on the grandparent, addressing both the level of grandparent involvement in the lives of children with ASD, and the effect of having a grandchild with an ASD on these grandparents in emotional, social, and financial terms.

Methods: Information was collected from grandparents of children with ASDs via an online survey. Only grandparents who lived within the United States or its territories were eligible to participate. The survey, which was created in consultation with the Grandparent Autism Network and other volunteer grandparents, was deployed on Survey Monkey and announced via the Interactive Autism Network (IAN) Community, AARP, and Autism Speaks. Grandparents could report on up to 3 separate grandchildren with an ASD.

Results: More than 2,500 grandparents completed the survey. Of these, 83% were grandmothers and 17% were grandfathers. Two-thirds were maternal grandparents, while one-third were paternal grandparents. Fifteen percent reported having more than one grandchild with ASD. Three percent reported that they also had a child who had been diagnosed with an ASD, while an additional 8% said they suspected one of their adult children should have received such a diagnosis, but had not. Many grandparents played a vital role in early recognition of their grandchild's ASD. Fully 30% said they were the first to notice a problem with their grandchild's development. (Many of those who felt concerned hesitated expressing this, which may indicate grandparents need support and resources in order to play a role as potential early identifiers of ASD.) An additional 49% said they encouraged and supported another person who was first to suspect the disorder. Many provided support to the grandchild’s family, with 57% contributing financially to meet ASD-related needs. In addition, 34% provided child care and 18% provided transportation to school or appointments at least once a week. More than 7% had combined households with their grandchild’s family, and 14% had moved closer, to help with ASD-related issues. In addition to expressing worry for their grandchildren, 85% experienced “a moderate” or “a great deal” of worry for their adult child (the parent).

Conclusions: Researchers, advocates, and policymakers seek a more in depth understanding of the effect of ASDs on families and society. This study provides a very large set of preliminary data on the impact of ASDs beyond the nuclear family.