Mothering Stories: A feminist occupational justice exploration of lived experiences of mothering autistic children attending mainstream schools

Abstract

Mothering is a learned and meaningful occupation (Bar & Jarus, 2015; Horne et al., 2005; Larson, 2000), grounded in individual contexts (Maher, 2005; Nurse et al., 2023), and shaped by societal and cultural definitions (Sethi, 2020). Mothering autistic children creates additional complexity to what is already considered a multilayered and nuanced role (Nurse, 2023) and moves the practice into a non-normative occupational experience (Chiaraluce, 2018). In recent years, Ireland has witnessed increases in numbers of autistic children attending mainstream schools and additional pressure on autism supports (Cremin, 2018). Mothers of autistic children are subject to high intensity and frequency of interactions with external bodies (Byrne et al., 2018). Further shaping mothering experiences are neoliberal principles such as self-responsibilisation and prevalent mothering ideologies prescribing what it means to be a good mother (Dash et al., 2023; Hays, 1996; Schmidt et al., 2023). Structural and sociocultural factors that compound the challenges of mothering autistic children create an impetus to explore mothers’ lived experiences, and their agency in addressing issues, from an occupational justice perspective. Drawing on feminism as a diverse epistemology, this study aimed to contribute to the growing literature on occupational justice theory by exploring its relevance to this population. Situated within narrative inquiry, this study investigated the lived experiences of mothers of autistic children attending mainstream school. It explored the relevance of occupational justice in these mothers’ lives, mothers’ micro-macro level supports, and their use of mothering as a mechanism for agency, belonging, becoming, and occupational identity construction. The self-biographising narrative accounts of 17 mothers were elicited using the biographical narrative interpretive method (BNIM) (Wengraf, 2001) which allowed for open consideration of the topic, free from imposed categories (O’Flynn, 2018). Reflexive thematic analysis (Braun & Clarke, 2022) was used to provide an overview of findings while, consistent with the conventions of BNIM, a smaller sample of four cases were chosen for more in-depth BNIM analysis. Findings revealed that mothers took primary responsibility for understanding their child and services, adapting practices and advocating for needs. This was related to their absorption of societal gender role expectations and influenced by prevalent mothering ideologies. The reliance of society and fathers on mothers to care and cope placed constraints and obligations on their occupational engagement. Career, social, and leisure activities were found to be compromised. Mothers were over-engaged in care work leading to occupational imbalance. Many mothers were excluded from the routine and expected activities of normative mothering and childhood, due to a lack of societal understanding or appropriate supports, resulting in experiences of occupational marginalisation. Adapting to alternative mothering practices disrupted and reconstructed mothers’ occupational identities (OI) and placed new demands on their mothering competence. Insufficient micro-macro supports restricted choices for subjectivity and increased obligated engagement. However, through the active practice of non-normative mothering, mothers strengthened their OI and claimed their own subjectivities. The mother-advocate forged a new role in society with associated purposeful activities that brought mothers meaning, opportunities to develop a sense of belonging and enabled them to become through mothering. The study demonstrated that prevalent mothering ideologies and singular normative mothering conceptualisations are problematic for mothers of autistic children. In the context of neoliberal and gender role expectations and a devaluation of caring occupations, in Ireland mothers are expected to take responsibility for care and advocacy without provision of adequate supports, reinforcing perceptions of mothering autistic children as a site of loss and sacrifice, and compounding experiences of occupational injustice. The study bridges a knowledge gap related to mothering autistic children and their experiences of occupational justice interpreted using feminism. Society can better support these mothers to enhance their everyday experiences of mothering by reconceptualising care and mothering, sharing the burden, and valorising alternative forms of intensive-inventive good mothering. The study has implications for occupational science, mother-centred feminist scholarship, and service delivery.