Struggle for recognition, rights, and redistribution: Understanding the identity of parents of children with autism spectrum disorder in China

Abstract

IntroductionThe number of children diagnosed with autism spectrum disorders (ASD) worldwide has increased rapidly in the past decade and China is no exception. Yet the identity development of Chinese parents of children with ASD is little understood. This study employed an ethics of care perspective to explore the identity of parents of children with ASD as shaped in their social–cultural context in mainland China.MethodsQualitatively driven mixed-method design was adopted. Qualitative data about their experiences were obtained from in-depth interviews with 20 parents from 17 families of children with ASD in Beijing and participant observation of 9 participants’ daily parenting experience.ResultsA complex and dynamic parenting identity was revealed. With limited recognition within and external to the family, parents experienced constant challenges toward their sense of self. The parents used strategies to assert their rights as carers and develop positive self-perceptions. Yet because of the unjust distribution of care work within families and with the state, the parents retained a sense of insecurity throughout the process of parenting. The parents’ sense of inferiority due to devaluing children with disabilities was accentuated by traditional Chinese cultural values about good parenting. They were intensely worried about the lack of policy for support as they and their children grew older.DiscussionThe findings reinforce the need for recognition of parents’ dignity, capacity, and efforts in caring.

Public concerns and attitudes towards autism on Chinese social media based on K-means algorithm

“…The situation is consistent with Cristiane et al’s research, which found that parents in the typical autistic family struggle to balance job and family responsibilities and that autistic families in underprivileged areas may even stop getting treatment due to the cost 46 – 48 . The essence of the status quo is that most autistic families in China are currently in the self-help stage, and only a small number of families are eligible for outpatient reimbursement of 70 percent 49 , 50 . As a result, we must improve the social support system and develop more socialized and private rehabilitation institutes to serve a larger Population.…”

“…Without a scientific explanation, parents are reluctant to admit their child has a disability and blame themselves. The concept of karma also contributes to parental guilt about their children’s misfortunes 50 . Words linked with autism, such as sociability, embarrassment, commoner, low self-esteem, and inclusion, reflect social discrimination and caregiver stigma may induce collateral stigma.…”