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

• Published in: Disability and rehabilitation 2024, Vol.ahead-of-print (ahead-of-print), p.1-12
• Main Authors: Wang, Linlin, Xie, Zhengli, Zhao, Dehu
• Format: Article
• Language: English
• Subjects: Autism Spectrum Disorder; Child; China; Humans; Parenting; parenting experience; Parents; rural areas; social-environment system; southwest China; Stress, Psychological
• ISSN: 0963-8288; 1464-5165
• DOI: 10.1080/09638288.2022.2161642

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. 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. 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. 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. 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.