100 Years from Now: Advocacy and Concerns of Parents of Adults with Autism in China and the United States

Background: While the experience of aging for individuals with autism – including caregiver perspectives and concerns – has been studied in the United States (US) (e.g., Roberts, 2010; Shogren & Plotner, 2012; Taylor & Seltzer, 2011), much of it focuses on the years immediately surrounding the school to adulthood transition, with fewer studies investigating the experiences of middle-aged and older adults (e.g., Perkins & Berkman, 2012). In China, where autism was diagnosed four decades later than in the United States (Tao, 1987), autism services are still emerging and research focuses on services for and experiences of young children and their families (e.g., McCabe, 2007; Qian, Reichle, & Bogenschutz, 2012). Like in the US, adult services in China are limited, and parents face significant uncertainty as their children with autism age.

Objectives: The purpose of this cross-cultural qualitative study was to examine the experiences of American and Chinese parents of adult sons and daughters with autism, and specifically to understand: In what ways are the experiences of these families similar and different in US and Chinese contexts? and What relationships exist between the nature and availability of adult services and the experiences of families as their children age? Analyzing the experiences of American and Chinese parents of adults with autism brings into focus not only similarities and differences across the two countries but also reveals themes that might be absent from analysis of a single cultural context.

Methods: Eighteen families participated in the study—seven in the US and eleven in China. Data were collected using a semi-structured interview protocol with seven open-ended prompts. Once all of the interviews were completed, the researchers independently coded one interview from each country using a combination of a priori and emerging codes (Weston et al., 2001). The researchers met multiple times during the pilot coding process to reconcile any coding differences (Saldaña, 2015) and to update the code list.

Results: Regarding issues of growing up and aging, three overarching themes emerged from the data: (1) transition to adult services plays out differently in the two nations, (2) parent advocacy and efforts in supporting and securing services for their children are similar in the two countries but also defined by the nature of available services, and (3) due to the scarcity of adult services in their country, Chinese parents express significantly more worries about their own aging and mortality as compared with US parents.

Conclusions: The results of this study indicate that while parents across both countries strive to act in their children’s best interests, the availability of resources informs the nature of their advocacy as well as how they view aging and the future. The results of this study make visible, in both countries, practices that are useful and should be expanded, as well as gaps and areas where more services are needed.