Spring is not yet here: raising a child with ASD in rural southwest China

Abstract

Purpose This study aims to reveal the parenting experiences of parents of children with autism spectrum disorder (ASD) in rural southwest China under the framework of ecological systems theory. Materials and methods Semi-structured interviews were conducted with 21 parents of children with ASD from rural southwest China and the interview data were analyzed using the three coding steps of the grounded theory method, namely open, axial, and selective coding. Results The results showed four themes: challenges from within the family; relationships between parents, the school, and the community; scarcity and low accessibility of available resources and services; the culture of discriminating against people with disabilities and the loss of eligibility for welfare. The mismatch between the needs of families of children with ASD and the resources available in social-environmental systems is the major issue faced by parents. Conclusions Raising a child with ASD in rural southwest China is affected by the interactions between the families and the internal structures in different environmental systems. The culture of discriminating against people with disabilities formed in the macrosystem could be the essential factor that affects the smoothness of the parenting process of children with ASD.