'Dyscluded': Women's experiences of mothering autistic children as described in their stories

Abstract

My research, grounded in feminist research practices, uses an auto/biographical approach to explore the experiential knowledge of women mothering autistic children. It arose from a yearning for discovery. I use women’s stories to increase understanding of this experience to disrupt deeply embedded discourses and to benefit others with shared experiences.

There is a substantial body of knowledge on the experience of parent’s raising autistic children, however this tends to focus on a specific aspect of their autism journey. It is often presented in a gender-blind way. Much of it fails to acknowledge the implications of sociocultural expectations on mothers and the emotional care work expected of them.

Thirty mothers of autistic children participated in lightly structured, research conversations to share stories of their everyday experiences. Using an auto/biographical approach enabled me to use my own experience as a valuable resource to provide a connection with participants experientially and emotionally. Unlike most other research on mothering experiences, the women were invited to participate if they identified their child as autistic and were free to share stories on any part of their autism experience.

I used a voice-centred relational approach and creative methods, including biographical poetry and collages, to make sense of the stories the women contributed. Creativity allowed me to make sense of the large amount of material collected, enabling me to hear the nuances of each individual story. This provided me with a way to make sense re-present the women’s words with authenticity.

The women describe how they experience mothering as it becomes disrupted because of cultural discourses that permeate society. Three overarching themes emerged from the stories they contributed: ‘emotional disorganisation; ‘an unknown reality’; and ‘dysclusion’. Mothers experience a complex and disorganised emotional response. This is compounded by the love they have for their child and the emotional work they feel obligated to perform. Their lives become shrouded in uncertainty as they are forced to adopt a different kind of mothering as the parameters of their expectations become shifted. Whilst mothers try to join, or create new communities, they become dyscluded. Isolated by the social discourse associated with autism, they lose their sense of belonging. They experience discrimination, stigmatisation, and marginalisation from professionals, friends, and family.

The richness of women’s stories in this research contributes to the literature on mothering autistic children and the influence of the inequalities inherent in society that undermine and devalue motherhood. I introduce the concepts of emotional disorganisation and dysclusion. Emotional disorganisation offers an alternative to models of grief to understand the complex emotional response these women go through. Dysclusion provides insight into the middle space, where the boundaries of inclusion and exclusion become blurred. My research provides a unique perspective on the experiences of women that are mothering autistic children.

Date of Award	2025
Original language	English
Supervisor	Julie Parsons (Director of Studies (First Supervisor)), Jonathan Clark (Other Supervisor) & Mike Sheaff (Other Supervisor)