“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

Abstract

Background:

Research shows the unique challenges that being autistic can pose in the perinatal period, including sensory sensitivities. Further challenges may relate to health care systems designed for non-autistic people and a lack of practitioner awareness. 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 was 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. Participants described a sense of continuous embodied physical and emotional pain of being without their babies. They felt that autistic grief may be different from non-autistic grief. Reconnecting with their babies through continuing bonds in more practical ways was important.

Discussion:

Many clinical implications arose that add to 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 is imperative.

Community Brief

Why is this an important issue?

Baby loss is an often-devastating experience across neurotypes. However, there have not been many studies exploring autistic people assigned female at birth’s (AFAB) experience, and completed research has mostly utilized surveys to help understand this experience.

What was the purpose of this study?

We wanted to speak to autistic people AFAB about what it is like to experience baby loss. We hoped to build on the previous, but limited, research to inform how we better support autistic people AFAB who may go on to lose a baby.

What did the researchers do?

Six autistic participants talked to one of the researchers about their experience of baby loss in an online research interview. We used a research method focused on understanding the meaning and experience of baby loss called Interpretative Phenomenological Analysis. We looked for similarities and differences across their experiences and wrote about them in this research.

What were the results and conclusions of the study?

We constructed five main themes to capture participants’ experiences of baby loss as shared in the interviews:

Participants described the unpredictability of the loss of a baby and predictability. The need for information was crucial in trying to feel safe, which they often accessed themselves, as practitioners failed to share the information they needed.

Baby loss was a traumatic and frightening experience for participants. They described the distress of heightened sensory experiences during baby loss, which could intensify their distress, and belittling and infantilising interactions with practitioners.

Baby loss was often experienced as unrecognised, stigmatised, and silenced by others, like family, friends, and practitioners. This could lead participants to hide their grief. They experienced strong feelings of shame and guilt, often blaming themselves for their babies’ deaths, connected to gender and disability.

The death of a baby was an unbearable pain, reflecting the physical absence of their babies. They said that their grief changed over time but was always there. They talked about their grief feeling different, connected to being autistic.

Reconnecting and experiencing bonds with baby were important, with participants finding personal, uniquely practical ways to remember their babies.

What is new or controversial about these findings?

We found similar things to previous research. The new things we found were the impact of unpredictability and not receiving enough information. We also found that autistic people AFAB blamed themselves as disabled people for the deaths of their babies.

What are potential weaknesses in the study?

The participants were mostly white, western, cis-gendered, speaking women aged between 35 and 45 years old. We asked participants about a range of different types of baby loss experiences. This means there may be differences among their experiences.

How will these findings help autistic adults now or in the future?

These findings suggest that while baby loss is distressing for everyone who might experience this, there are unique challenges for autistic people. These findings are important to consider in health care to improve the experiences of autistic people AFAB who may lose a baby.