Negotiating work and care in Chinese families of children with autism: reframing mothers’ narratives through a social-relational lens

Abstract

Moving away from an individual and pathological framework and instead drawing on a social-relational model of disability, this article examines the experiences of mothers with autistic children in navigating between caregiving and working life in China. Conducting narrative analysis of 14 in-depth interviews with mothers of autistic children, we argue that their decisions to make adjustments to work are situated in social and relational dynamics of disabled and gendered cultural ideologies, inaccessibility to healthcare, education, and social services, as well as filial familial relationship. As a result, they have to adjust their careers and personal life, such as resigning from previous work and becoming full-time mothers. Although these women constantly experienced a strong sense of loss in terms of their personal and social identity, some developed new perspectives seeing disability, normality, and the meaning of ‘good mother’ in the process of negotiating their work life and motherhood role.

POINTS OF INTERESTS

• Mothers of autistic children in China experience social and relational barriers in caregiving and working life.

• Mothers adjust to their careers and personal life by quitting their previous jobs and becoming full-time mothers, changing positions, or switching to part-time employment.

• The unavailability of healthcare and social service, as well as the discrimination of the education system against children with autism, significantly affect their mothers’ work and family life.

• Autistic children encounter exclusion in the filial family in China. Grandparents and fathers of autistic children often refuse to participate in childcare arrangements. As a result, mothers had to bear the care responsibility alone.

• Some mothers described their personal journey of ‘walking out’. They rejected the idea that autism is a form of abnormality needed to be cured. They also organized to advocate for social inclusion and policy changes.

Keywords:

• Work and family life
• social-relation model
• care
• interdependency

Acknowledgments

We are deeply indebted to all women who generously shared their stories with us. We are also grateful to the parent organizations that supported this study. Special thanks are extended to the faculty and students of the University of Washington’s Seminar on Writing Disability Studies for providing care-full feedback on our writing, as they always do.

Disclosure statement

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

Additional information

Funding

This work was supported by the National Social Science Foundation of China (Grant No. 21&ZD182) and Yifang Foundation (YFJE-20200410).