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

References

• Anderson-Chavarria, Melissa. 2022. “The Autism Predicament: Models of Autism and Their Impact on Autistic Identity.” Disability & Society 37 (8): 1321–1341. https://doi.org/10.1080/09687599.2021.1877117
   Web of Science ®Google Scholar
• Berghs, Maria. 2017. “Practices and Discourses of Ubuntu: Implications for an African Model of Disability?” African Journal of Disability 6 (1): 1–8. https://doi.org/10.4102/ajod.v6i0.292
   Google Scholar
• Brede, Janina, Anna Remington, Lorcan Kenny, Katy Warren, and Elizabeth Pellicano. 2017. “Excluded from School: Autistic Students’ Experiences of School Exclusion and Subsequent Re-Integration into School.” Autism & Developmental Language Impairments 2 (January): 239694151773751. https://doi.org/10.1177/2396941517737511
   Google Scholar
• Carey, Allison C., Pamela Block, and Richard K. Scotch. 2019. “Sometimes Allies: Parent-Led Disability Organizations and Social Movements.” Disability Studies Quarterly 39 (1). https://doi.org/10.18061/dsq.v39i1.6281
   Google Scholar
• Chen, F., G. Liu, and C. A. Mair. 2011. “Intergenerational Ties in Context: Grandparents Caring for Grandchildren in China.” Social Forces; A Scientific Medium of Social Study and Interpretation 90 (2): 571–594. https://doi.org/10.1093/sf/sor012
   PubMed Web of Science ®Google Scholar
• Cidav, Zuleyha, Steven C. Marcus, and David S. Mandell. 2012. “Implications of Childhood Autism for Parental Employment and Earnings.” Pediatrics 129 (4): 617–623. https://doi.org/10.1542/peds.2011-2700
   PubMed Web of Science ®Google Scholar
• Clandinin, D. Jean. 2016. Engaging in Narrative Inquiry. New York: Routledge.
   Google Scholar
• Clandinin, D. Jean, and Vera Caine. 2013. “Narrative Inquiry.” In Reviewing Qualitative Research in the Social Sciences, edited by Audrey A. Trainor, Elizabeth Graue, 178–191. New York: Routledge.
   Google Scholar
• Clandinin, D. Jean, and F. Michael Connelly. 2004. Narrative Inquiry: Experience and Story in Qualitative Research. New Jersey: John Wiley & Sons.
   Google Scholar
• Creswell, John W., and Cheryl N. Poth. 2016. Qualitative Inquiry and Research Design: Choosing among Five Approaches. London: Sage Publications.
   Google Scholar
• Esin, Cigdem. 2011. “Narrative Analysis Approaches.” In Qualitative Research Methods in Psychology: Combining Core Approaches, edit by Frost, Nollaig, 92–117. Berkshire: Open University Press.
   Google Scholar
• Fairthorne, Jenny, Nick de Klerk, and Helen Leonard. 2016. “Brief Report: Burden of Care in Mothers of Children with Autism Spectrum Disorder or Intellectual Disability.” Journal of Autism and Developmental Disorders 46 (3): 1103–1109. https://doi.org/10.1007/s10803-015-2629-9
   PubMed Web of Science ®Google Scholar
• Frederick, Angela. 2017. “Risky Mothers and the Normalcy Project.” Gender & Society 31 (1): 74–95. https://doi.org/10.1177/0891243216683914
   Web of Science ®Google Scholar
• Garland-Thomson, Rosemarie. 2005. “Feminist Disability Studies.” Signs: Journal of Women in Culture and Society 30 (2): 1557–1587. https://doi.org/10.1086/423352
   Web of Science ®Google Scholar
• Gray, David E. 1993. “Perceptions of Stigma: The Parents of Autistic Children.” Sociology of Health and Illness 15 (1): 102–120. https://doi.org/10.1111/1467-9566.ep11343802
   Web of Science ®Google Scholar
• Gray, David E. 2002. “Everybody Just Freezes. Everybody is Just Embarrassed’: Felt and Enacted Stigma among Parents of Children with High Functioning Autism.” Sociology of Health & Illness 24 (6): 734–749. https://doi.org/10.1111/1467-9566.00316
   Web of Science ®Google Scholar
• Grech, Shaun. 2009. “Disability, Poverty and Development: Critical Reflections on the Majority World Debate.” Disability & Society 24 (6): 771–784. https://doi.org/10.1080/09687590903160266
   Web of Science ®Google Scholar
• Green, Sara Eleanor. 2007. “We’re Tired, Not Sad’: Benefits and Burdens of Mothering a Child with a Disability.” Social Science & Medicine 64 (1): 150–163. https://doi.org/10.1016/j.socscimed.2006.08.025
   PubMed Web of Science ®Google Scholar
• Hays, Sharon. 1996. The Cultural Contradictions of Motherhood. New Haven: Yale University Press.
   Google Scholar
• Houser, Linda, Megan McCarthy, Lindsay Lawer, and David Mandell. 2014. “A Challenging Fit: Employment, Childcare, and Therapeutic Support in Families of Children with Autism Spectrum Disorders.” Journal of Social Service Research 40 (5): 681–698. https://doi.org/10.1080/01488376.2014.930944
   Web of Science ®Google Scholar
• Huang, Shixin. 2019. “Ten Years of the CRPD’s Adoption in China: Challenges and Opportunities.” https://doi.org/10.1080/09687599.2019.1604384
   Google Scholar
• Huang, Shixin. 2022. “Activating Disability Care: The Formation of Collective Disability Care Networks in China’s COVID-19 Outbreak.” Disability & Society 0 : 1–22. https://doi.org/10.1080/09687599.2022.2045188
   Google Scholar
• Ingstad, Benedicte, and Susan Reynolds Whyte. 1995. Disability and Culture. California: University of California Press Berkeley.
   Google Scholar
• Johansson, Shruti Taneja. 2016. “Parents Negotiating Change: A Middle-Class Lens on Schooling of Children with Autism in Urban India.” Contemporary Education Dialogue 13 (1): 93–120. https://doi.org/10.1177/0973184915603175
   Google Scholar
• Kaplan, Rachel L. 2010. “Caregiving Mothers of Children with Impairments: Coping and Support in Russia.” Disability & Society 25 (6): 715–729. https://doi.org/10.1080/09687599.2010.505747
   Web of Science ®Google Scholar
• Kittay, Eva Feder. 2013. Love’s Labor: Essays on Women, Equality and Dependency. Love’s Labor: Essays on Women, Equality and Dependency. New York: Routledge. https://doi.org/10.4324/9781315021218
   Google Scholar
• Knight, Kathryn. 2013. “The Changing Face of the ‘Good Mother’: Trends in Research into Families with a Child with Intellectual Disability, and Some Concerns.” Disability & Society 28 (5): 660–673. https://doi.org/10.1080/09687599.2012.732540
   Web of Science ®Google Scholar
• Kröger, Teppo. 2009. “Care Research and Disability Studies: Nothing in Common?” Critical Social Policy 29 (3): 398–420. https://doi.org/10.1177/0261018309105177
   Web of Science ®Google Scholar
• Liao, Xiaoli, Xianyang Lei, and Yamin Li. 2019. “Stigma among Parents of Children with Autism: A Literature Review.” Asian Journal of Psychiatry 45 (October): 88–94. https://doi.org/10.1016/j.ajp.2019.09.007
   PubMedGoogle Scholar
• Lilley, Rozanna. 2013. “It’s an Absolute Nightmare: Maternal Experiences of Enrolling Children Diagnosed with Autism in Primary School in Sydney, Australia.” Disability & Society 28 (4): 514–526. https://doi.org/10.1080/09687599.2012.717882
   Web of Science ®Google Scholar
• Marsack, Christina N., and Tam E. Perry. 2018. “Aging in Place in Every Community: Social Exclusion Experiences of Parents of Adult Children with Autism Spectrum Disorder.” Research on Aging 40 (6): 535–557. https://doi.org/10.1177/0164027517717044
   PubMed Web of Science ®Google Scholar
• Mbamba, Crispin R., and Ignatus K. Ndemole. 2021. “I Paused My Life’: Experiences of Single Mothers Caring for Their Autistic Children in Ghana.” Journal of Social Service Research 47 (5): 659–669. https://doi.org/10.1080/01488376.2021.1875966
   Web of Science ®Google Scholar
• McCabe, Helen. 2008. “Two Decades of Serving Children with Autism in the People’s Republic of China: Achievements and Challenges of a State-Run Mental Health Center.” Disability & Society 23 (3): 271–282. https://doi.org/10.1080/09687590801954059
   Web of Science ®Google Scholar
• McCabe, Helen. 2013. “Bamboo Shoots after the Rain: Development and Challenges of Autism Intervention in China.” Autism: The International Journal of Research and Practice 17 (5): 510–526. https://doi.org/10.1177/1362361312436849
   PubMed Web of Science ®Google Scholar
• McLaughlin, Janice. 2006. “Conceptualising Intensive Caring Activities: The Changing Lives of Families with Young Disabled Children.” Sociological Research Online 11 (1): 51–61. https://doi.org/10.5153/sro.1219
   Web of Science ®Google Scholar
• McLaughlin, Janice, Dan Goodley, Emma Clavering, Pamela Fisher, Dan Goodley, and Janice McLaughlin. 2008. “Theorising Parents, Professionals and Disabled Babies.” Families Raising Disabled Children: Enabling Care and Social Justice, 1–20. New York: Springer.
   Google Scholar
• Meekosha, Helen. 2011. “Decolonising Disability: Thinking and Acting Globally.” Disability & Society 26 (6): 667–682. https://doi.org/10.1080/09687599.2011.602860
   Web of Science ®Google Scholar
• Morris, Jenny. 1997. “Care or Empowerment? A Disability Rights Perspective.” Social Policy & Administration 31 (1): 54–60. https://doi.org/10.1111/1467-9515.00037
   Web of Science ®Google Scholar
• Nishida, Akemi. 2022. Just Care: Messy Entanglements of Disability, Dependency, and Desire. Vol. 9. Philadelphia, PA: Temple University Press.
   Google Scholar
• Oliver, Mike, and Colin Barnes. 2010. “Disability Studies, Disabled People and the Struggle for Inclusion.” British Journal of Sociology of Education 31 (5): 547–560. https://doi.org/10.1080/01425692.2010.500088
   Web of Science ®Google Scholar
• Pan, Lu., and Jingzhong Ye. 2015. “Family Care of People with Intellectual Disability in Rural China: A Magnified Responsibility.” Journal of Applied Research in Intellectual Disabilities : JARID 28 (4): 352–366. https://doi.org/10.1111/jar.12167
   PubMed Web of Science ®Google Scholar
• Piepzna-Samarasinha, Leah Lakshmi. 2018. Care Work: Dreaming Disability Justice. Vancouver: Arsenal Pulp Press.
   Google Scholar
• Reindal, SOLVEIG MAGNUS. 1999. “Independence, Dependence, Interdependence: Some Reflections on the Subject and Personal Autonomy.” Disability & Society 14 (3): 353–367. https://doi.org/10.1080/09687599926190
   Web of Science ®Google Scholar
• Riessman, Catherine Kohler. 2008. Narrative Methods for the Human Sciences. London: Sage.
   Google Scholar
• Rock, Patricia. 1988. “Food for Thought, the Carers’ Movement: DANGERS AHEAD?” The Problem of Emotion in Care 133: 1–4.
   Google Scholar
• Ryan, Sara, and Katherine Runswick-Cole. 2008. “Repositioning Mothers: Mothers, Disabled Children and Disability Studies.” Disability & Society 23 (3): 199–210. https://doi.org/10.1080/09687590801953937
   Web of Science ®Google Scholar
• Safe, Anneleise, Annette Joosten, and Matthew Molineux. 2012. “The Experiences of Mothers of Children with Autism: Managing Multiple Roles.” Journal of Intellectual & Developmental Disability 37 (4): 294–302. https://doi.org/10.3109/13668250.2012.736614
   PubMed Web of Science ®Google Scholar
• Sanchez, Laura, and Elizabeth Thomson. 1997. “Becoming Mothers and Fathers: Parenthood, Gender, and the Division of Labor.” Gender & Society 11 (6): 747–772. https://doi.org/10.1177/089124397011006003
   Web of Science ®Google Scholar
• Shakespeare, Tom. 2013. Disability Rights and Wrongs Revisited. 2nd ed. New York: Routledge. https://doi.org/10.4324/9781315887456
   Google Scholar
• Shang, Xiaoyuan, and Karen R. Fisher. 2014. “Social Support for Mothers of Children with Disabilities in China.” Journal of Social Service Research 40 (4): 573–586. https://doi.org/10.1080/01488376.2014.896849
   Web of Science ®Google Scholar
• Sinclair, Jim. 2012. “Don’t Mourn for Us.” Autonomy, The Critical Journal of Interdisciplinary Autism Studies 1 (1): 1–4. Demonstration Issue, October. http://www.larry-arnold.net/Autonomy/index.php/autonomy/article/view/AR1.
   Google Scholar
• Sitimin, Shirley Angie, Amily Fikry, Zulhabri Ismail, and Norashikin Hussein. 2017. “Work-Family Conflict among Working Parents of Children with Autism in Malaysia.” Procedia Computer Science 105(December 2016): 345–352. https://doi.org/10.1016/j.procs.2017.01.232
   Google Scholar
• Smith-Chandler, Natalie, and Estelle Swart. 2014. “In Their Own Voices: Methodological Considerations in Narrative Disability Research.” Qualitative Health Research 24 (3): 420–430. https://doi.org/10.1177/1049732314523841
   PubMed Web of Science ®Google Scholar
• Snoddon, Kristin, and Kathryn Underwood. 2014. “Toward a Social Relational Model of Deaf Childhood.” Disability & Society 29 (4): 530–542. https://doi.org/10.1080/09687599.2013.823081
   Web of Science ®Google Scholar
• Sousa, Amy C. 2011. “From Refrigerator Mothers to Warrior-Heroes: The Cultural Identity Transformation of Mothers Raising Children with Intellectual Disabilities.” Symbolic Interaction 34 (2): 220–243. https://doi.org/10.1525/si.2011.34.2.220
   Web of Science ®Google Scholar
• Stahmer, Aubyn C., Sarah Vejnoska, Suzannah Iadarola, Diondra Straiton, Francisco Reinosa Segovia, Paul Luelmo, Elizabeth H. Morgan, et al. 2019. “Caregiver Voices: Cross-Cultural Input on Improving Access to Autism Services.” Journal of Racial and Ethnic Health Disparities 6 (4): 752–773. https://doi.org/10.1007/s40615-019-00575-y
   PubMed Web of Science ®Google Scholar
• Thomas, Carol. 2007. Sociologies of Disability and Illness : Contested Ideas in Disability Studies and Medical Sociology. New York: Palgrave Macmillan.
   Google Scholar
• Tracy, Sarah J. 2019. Qualitative Research Methods: Collecting Evidence, Crafting Analysis, Communicating Impact. New Jersey: John Wiley & Sons.
   Google Scholar
• Vaidya, Shubhangi. 2016. “Autism and the Family in Urban India: Looking Back, Looking Forward. Autism and the Family in Urban India: Looking Back, Looking Forward.” https://doi.org/10.1007/978-81-322-3607-8
   Google Scholar
• van der Mark, Elise J., Ina Conradie, Christine W. M. Dedding, and Jacqueline E. W. Broerse. 2019. “We Create Our Own Small World’: Daily Realities of Mothers of Disabled Children in a South African Urban Settlement.” Disability & Society 34 (1): 95–120. Routledge https://doi.org/10.1080/09687599.2018.1511415
   Web of Science ®Google Scholar
• Watson, Nick, Linda McKie, Bill Hughes, Debra Hopkins, and Sue Gregory. 2004. “(Inter)Dependence, Needs and Care: The Potential for Disability and Feminist Theorists to Develop an Emancipatory Model.” Sociology 38 (2): 331–350. https://doi.org/10.1177/0038038504040867
   Google Scholar
• Wu, Jinting. 2020. “Mothering Special Children: Negotiating Gender, Disability, and Special Education in Contemporary China.” Harvard Educational Review 90 (1): 26–48. https://doi.org/10.17763/1943-5045-90.1.26
   Web of Science ®Google Scholar
• Yan, Yunxiang. 2016. “Intergenerational Intimacy and Descending Familism in Rural North China.” American Anthropologist 118 (2): 244–257. https://doi.org/10.1111/aman.12527
   Web of Science ®Google Scholar
• Zhao, Meiju, and Wangqian Fu. 2022. “The Resilience of Parents Who Have Children with Autism Spectrum Disorder in China: A Social Culture Perspective.” International Journal of Developmental Disabilities 68 (2): 207–218. https://doi.org/10.1080/20473869.2020.1747761
   PubMed Web of Science ®Google Scholar