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.

Implications for Rehabilitation

• The diagnosis of a child with autism spectrum disorder (ASD) is a difficult and stressful experience for the parents of the child and the whole family.

• This study highlights the mismatch between parent/family needs, and the resources in different environmental systems of rural southwest China, which may have a limiting effect on the rehabilitation of children with ASD.

• Emphasis on effective collaboration between social systems to help families with ASD children develop more supportive social conditions should be included in the discussion of rehabilitation projects.

• The educational and psychological interventions for parents of ASD children should be included in the rehabilitation, which enhance their scientific understanding of self-identity, family and social environment and parenting style.

Keywords:

• Autism spectrum disorder
• parents
• parenting experience
• rural areas
• southwest China
• social-environment system

Acknowledgments

The authors gratefully acknowledge the participants for their time and engagement. They also thank Yuhua community and Panlong special education school for their ongoing assistance in the study.

Disclosure statement

No potential conflict of interest was reported by the author(s).

Correction Statement

This article has been republished with minor changes. These changes do not impact the academic content of the article.

Additional information

Funding

This work was financially supported by the Yunnan Provincial Office of Philosophy and Social Sciences under Grant QN202117.