Making Sense of Autism: Parents' Experiences in the People's Republic of China

Date of Award

May 2014

Degree Type

Dissertation

Degree Name

Doctor of Philosophy (PhD)

Department

Teaching and Leadership

Advisor(s)

Douglas Biklen

Keywords

autism, China, constructionist, disability studies, parents, qualitative

Subject Categories

Education

Abstract

In this qualitative study, I explore the experiences of parents of children with autism in China. I investigate how the parents negotiate their day-to-day life of raising a child with autism in contemporary urban Chinese society. I also examine the socially constructed nature of autism within this specific social and cultural context and how the constructed meaning of autism is reflected in the way that parents perceive, treat, and educate their children with the autism label.

Participants were volunteers recruited from a group of parents of children with autism who attended an educational program offered by Sunshine Autism Institute (SAI), which is located in a small village on the eastern outskirts of a metropolitan city of China. In-depth interviews and participant observations were used to collect rich, detailed, descriptive data in naturalistic settings.

The findings suggest that in a society where the medical-model discourse of disability is the conventional and dominant form of thinking, autism is perceived as a disease that needs to be "cured." Moreover, children with the autism label generally do not have the opportunity to attend public schools and are usually rejected by mainstream society. However, some parents came to see their children with autism beyond the confinement of medical description. They recognized their children as having their own characteristics, strengths, interests, and needs. They valued their children's individuality, affirmed their competence. In these families, autistic ways of being were respected and embraced. Findings also show how when acknowledged as complete and full persons, children with the autism label can be: included as full participants in family life; enabled by being presumed competent; and, mainstreamed into classrooms with other children when appropriate accommodations are provided.

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