Experiences of social exclusion in public settings among parents and primary caregivers of autistic children: a phenomenological study

This study aimed to explore in depth the experiences of social exclusion in public settings among parents and primary caregivers of autistic children. In this descriptive phenomenological study, semi-structured in-depth interviews were conducted with 17 participants caring for 16 children (14 individual-parent interviews, one joint mother-father interview, and one interview with a primary caregiver/grandmother). Data were analysed using steps 1–6 of Colaizzi’s phenomenological analysis procedure; participant validation (step 7) was not undertaken in view of the sample’s high caregiving burden and emotionally demanding circumstances reported by participants. Reporting followed the COREQ guidelines. Seven main themes were identified: (1) Invisible Difference and a Crisis of Credibility, (2) Moral Judgement of the Parent, (3) The Exclusionary and Protective Roles of Institutions, (4) Invisible Care Work, Self-Sacrifice, and the Narrowing/Dissolution of Identity Within the Caregiving Role, (5) Coping Strategies Between Avoidance and Deliberate Exposure, (6) The Protective Role of Material Resources, Social Capital, and Social Embeddedness, and (7) Persistent Future Anxiety: “What Will Happen After I Am Gone?” Two additional findings were also identified: effects on siblings, and a temporary easing of exclusion in seaside settings. The findings reveal a multidimensional experience of exclusion in which parents and primary caregivers of autistic children are repeatedly required to explain their child’s invisible difference in public settings, face the risk of moral judgement, and cope with unpredictable institutional responses. The intensity of this experience varies according to the resources available to the family and is lived under the shadow of persistent anxiety about the child’s future. These findings provide a context-specific, empirical basis that can inform public awareness and institutionally inclusive policies.