Abstract
Autism spectrum disorder (ASD) is a neurodevelopmental disorder characterized by impaired communication skills, repetitive behaviors, and restricted interests. Numerous studies have examined the underlying causes of ASD and have identified biological causes including genetic and environmental factors. Researchers have also explored parental perceptions regarding the etiology of ASD. These studies have demonstrated that parents endorse a wide variety of causes for ASD, including genetic factors, vaccinations, prenatal exposures, and other environmental factors. However, there are few studies addressing parental perceptions among minority or immigrant populations, who may be likely to hold beliefs that are heavily influenced by their own culture. The purpose of this study was to explore the impact of culture on perceptions of causality, treatment and family dynamics among parents of children with ASD who are of Chinese ancestry. To this end, we conducted semi-structured interviews with six Chinese-American mothers of children with ASD and analyzed the interview transcripts using ATLAS.ti software. We found that as a group the experiences and beliefs of the mothers we interviewed were similar to those of parents described in previous studies. For example, the mothers we interviewed believed in Western notions of causality (including genetics) and treatment (such as ABA therapy), and shared stories of guilt, shame and blame in their families and social networks. However, our mothers also commented on experiences that were unique to their status as immigrants, such as additional grief over the loss of opportunity in the United States for their child, and further isolation caused by language barriers and geographical distance from extended family members. Our results suggest a need for additional support for Chinese immigrant parents coping with their child’s diagnosis of ASD. Future research should focus on exploring the experiences of a broader population of immigrant parents whose children have been diagnosed with ASD.