Experience and identity of Chinese parents with Autism: Findings from a qualitative study

Abstract

Background: Though there has been rising concern on families of children with autism, the parenting experience and identity of parents in Mainland China remain understudied. This study adopts social constructionism paradigm as the framework to explore the subjective experience and identity of parents of children with autism in China and to uncover how the specific social cultural context of China shape parents’ experience and constitute their identity.

Main body: Qualitative research method was employed. 27 parents (18 mothers and 9 fathers) of children with autism in Beijing were recruited through purposeful sampling method. In-depth interview was conducted with each participant and thematic analysis was employed for data analysis. Parents revealed experiences of being defeated, being excluded, and role conflicts. For some parents, finally they went through a process of making meaning out from their parenting and finding ways out. The label of being perceived as losers triggered their confusion on self-identity; they internalized and accepted this stigma and felt humiliated, while at the same time they tried to resist to maintain their proud. Data reflected a process of struggling and their manners to resist the mainstream culture and discourses. The study share their journey on accepting their autistic children and developing an identity of “I am an endeavor parent”.

Discussion: This study reveals the identity politics of parents of children with autism in Mainland China and looks into how the interplay of culture and dominant discourses co-construct parents’ identity politics. Findings of this study also provide implications for child and parenting service at different levels.