“It was all tied into being a disabled person... It was another reason to feel inadequate”. Autistic Women and Birthing People’s Experiences of Baby Loss: An Interpretative Phenomenological Analysis

Background: Research shows the unique challenges that being autistic can pose to the perinatal period, including sensory sensitivities. Healthcare systems designed for non-autistic people, and lack of practitioner awareness may contribute to this. Literature exploring autistic people assigned female at birth’s (AFAB) experiences of baby loss is more limited, but this can be traumatic, as reported in key literature. Methods: This qualitative study used Interpretative Phenomenological Analysis (IPA) to understand how six autistic people AFAB made sense of their experiences of baby loss through miscarriage, stillbirth and neonatal death. Results: Participants described the unpredictability, trauma and absence of care from practitioners throughout baby loss, which left them feeling unsafe, neglected, and not believed. Participants shared how baby loss heightened their autistic experiences and were perceived to intensify their distress. They reported shame, guilt, and blame, in relation to their autistic and gender identity, perpetuated by the silencing and stigmatising societal discourses surrounding baby loss. A sense of continuous embodied physical and emotional pain of being without their babies was described, and that autistic grief felt different to non-autistic grief. Reconnecting with their babies through continuing bonds in more practical ways were important. Discussion: Many clinical implications arose which strengthen existing research, including the necessity for improved practitioner awareness and knowledge in perinatal settings, along with the unique experiences of baby loss and grief for autistic people AFAB, which this research adds. Trauma-informed care provided in line with needs and preferences are imperative.