Exploring the Birth Stories of Women on the Autism Spectrum

Abstract

Objective: To explore birth stories of autistic women to understand how they make sense of the experience of childbirth.

Design: Narrative analysis.

Setting: Online interviews.

Participants: Sixteen women on the autism spectrum shared 19 birth stories.

Methods: Participants were recruited from online autism forums and were invited to share their birth stories via online asynchronous interviews. Using Burke's approach to narrative analysis, we identified five elements within each story, including Scene (when/where), Agents (who), Act (what), Agency (how), and Purpose (why). We explored parts of the narratives where two or more elements were out of balance with each other.

Results: Tension most often occurred when actions taken by the health care team (Act) were out of balance with their approach to care (Agency), which left participants feeling that their concerns were minimized, their wishes were ignored, and they were left out of critical communication and education. Participants also struggled when their own autistic traits (Agent), such as sensory sensitivities, were out of balance with the birth environment (Scene), which impaired their ability to communicate with providers and participate in the birth.

Conclusion: Poor communication, untreated pain, and sensory overload dominated the birth narratives of participants. Nurses should trust women's reports of pain and anxiety because autistic women may appear calm even when in severe distress. Environmental adjustments, such as dimming the lights, can help minimize sensory overload. Nurses need to provide thorough and nonjudgmental education about the birth process to ensure that autistic women feel safe and in control and do not withdraw from care.

Keywords: autism spectrum disorder; birth; childbirth; narrative analysis; obstetric; parturition; pregnancy; qualitative research.