Autistic Women and Birthing People’s Experiences of Baby Loss

Background and Rationale: Research shows the unique challenges that being autistic can pose to the perinatal period, including sensory sensitivities, pain, communication differences. Systemic barriers, such as often neurotypically designed healthcare systems and lack of practitioner awareness may contribute to this. Literature exploring autistic baby loss is more limited, but the strong sense of trauma has been noted. The unique experiences of autistic baby loss are important to explore, which this research aimed to do. Methodology: This qualitative study used Interpretative Phenomenological Analysis to explore how six autistic women and birthing people made sense of their experiences of baby loss. Results: Five Group Experiential Themes and 12 subthemes were constructed from the data. Participants described the unpredictability and trauma of baby loss. They described the absence of care from healthcare professionals, which left them feeling unsafe, neglected, belittled, and not believed as autistic people. Participants described how heightened autistic experiences were perceived as intensifying distress, along with strong feelings of shame, guilt, and blame, both as women and birthing people and autistic people for their loss, perpetuated by the disenfranchised, silencing and stigmatised societal discourses of baby loss. Participants described the continuous embodied physical and emotional pain and grief of being physically without their babies, and a sense that autistic grief felt different to non-Autistic grief. Finding meaning and reconnecting through continuing bonds, in more practical and tangible ways were important to remember their babies. Discussion: The research strengthens existing research and adds unique understandings of autistic baby loss. Many clinical implications arose, including the necessity for improved staff awareness, knowledge and skills in perinatal care settings, including of the unique experiences of autistic baby loss and grief and the role of a clinical psychologist in shaping this.