The Role of Grandparents in the Identification of a Grandchild's Autism Spectrum Disorder and the Information Sources They Utilize

Background: Early diagnosis and intervention is essential for children with Autism Spectrum Disorder (ASD).  Although previous research suggests that grandparents often play a role in helping families cope with having a child with ASD, little is known about the role that grandparents may play in recognizing the condition itself.  It also remains unclear what informational resources grandparents use to learn about ASD.    

Objectives: The goal of the study was to examine the extent to which grandparents played a role in the recognition of a grandchild’s ASD, and to ascertain factors associated with such recognition.  A secondary goal was to identify what resources grandparents turned to for ASD information.  Such knowledge may help foster early diagnosis and guide professionals in the development of educational materials. 

Methods: Grandparents were recruited through web or email-based announcements from the Kennedy Krieger Institute's Interactive Autism Network (IAN) Research project, the Autism Speaks Foundation, the Grandparent Autism Network, and the American Association of Retired People (AARP).  Participants participated anonymously in an online survey designed to be completed in approximately 30 minutes. Participants were required to live in the U.S. or 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.

Results: A total of 1881 participants completed the online survey, including 1534 grandmothers (81.6%) and 347 grandfathers (18.4%), who also identified as maternal (63.4%) or paternal (35.6%) grandparents.  

More than 75% of grandparents indicated that they had played a role in identifying their grandchild’s ASD, with 27.5% “independently raised concerns about [their grandchild’s] development” and 48.2% “supporting others who raised concerns.”  A binomial regression analysis (X²=207.76, p<.001, Nagelkerke R²=.18) revealed that middle-aged, working grandmothers who lived within 25 miles of their grandchild were significantly more likely to play a role in ASD identification; grandparental lineage (maternal vs. paternal), education level, and urbanicity were unrelated.   The younger the age that grandparents reported that they first worried about their grandchild’s development (x=2.08 years, sd=1.95), the younger the age that their grandchild first received an ASD diagnosis, (x=3.10 years, sd=2.12), r=.43, p<.001. 

Grandparents turned to their son or daughter (80.7%), their son- or daughter-in-law (30.9%), autism therapy providers (e.g., speech, OT, ABA; 35.3%), school personnel (28.5%), medical professionals (20.7%), mental health providers (e.g., psychologists; 12.2%), and advocacy or government organizations such as Autism Speaks (72.5%), the Autism Society of America (24.2%), the Centers for Disease Control or National Institutes of Health (8.9%) for ASD information. 

Conclusions: The majority of grandparents played a role in identifying their grandchild’s ASD.  More than one quarter were the first to raise concerns about a grandchild’s development.  Encouraging professionals to include grandparents in the diagnostic process, particularly middle-aged grandmothers who live within 25 miles of their grandchild, may offer benefits for the early detection of ASD.  Professionals and organizations can also be encouraged to target materials specifically for grandparents.