Abstract
Background:
Pregnancy is associated with a multitude of physiological and emotional changes that can be challenging for physical and mental health. Emerging pregnancy research suggests that additional challenges for autistic women exist, including heightened sensory sensitivity, barriers to communication, and overwhelming birth experiences.
Methods:
This study provides an in-depth investigation of autistic women’s experiences of pregnancy and birth using interpretative phenomenological analysis. Eight autistic cisgender women, seven of whom received their autism diagnosis after birthing, participated in semi-structured interviews.
Results:
Three group experiential themes were identified: (1) Reinterpretation of perinatal experiences after diagnosis (disconnection from reality during birth; grief for expected journey; battle with sensory experiences), (2) the ups and downs of connecting to their maternal identity (feelings of instant affection and love; sense of not belonging), and (3) seeking support: need versus reality (feeling uncared for, unsupported, and powerless; containing, consistent, warm support).
Conclusion:
Autistic people have similar pregnancy experiences to non-autistic people but experience additional challenges. Most participants experienced disconnection from reality during birth, leading to confusion and distress. Societal stigma and perceived judgment negatively impacted maternal identities. Heightened sensory sensitivity was common and could interfere with daily life. Consistent support was valued but rarely experienced; all participants struggled to communicate their needs to professionals and felt uncared for and misunderstood.
Community Brief
Why is this an important issue?
Pregnancy is a time of multiple physical and emotional changes that can be challenging for many people. Autistic women have been found to experience increased stress, depression, and anxiety during pregnancy. However, autistic women are often diagnosed later and experience delayed access to support. There is limited research exploring autistic women’s experiences of pregnancy to inform future support needs.
What was the purpose of this study?
To explore and understand the experiences of pregnancy and birth in autistic people.
What did the researchers do?
The researchers advertised their qualitative study on a database and social media asking for autistic women, who were pregnant within the last 16 years. The researchers interviewed eight participants online to ask about their pregnancy and birth experiences. The researchers transcribed, analyzed the interviews, and developed themes.
What were the results of the study?
Autistic women reported increased sensory sensitivity, particularly smell, that negatively impacted daily life during pregnancy. Feeling disconnected from reality and confused during birth was a common experience. Participants felt communication with professionals was difficult and care was inconsistent. Stigma and expectations of motherhood led to reported feelings of inadequacy. Participants discussed examples of compassionate care. They felt that consistency in care would be important in future.
What do these findings add to what was already known?
Autistic women can experience disconnection or shutting down during birth, which is different to non-autistic women. This can result in a distressing and confusing birth experience. Sensory sensitivity, particularly smell, is all-consuming and leads to aversions years later. Participants struggled with self-doubt about their competence as a mother, due to fear of judgment and external pressures to conform. Participants felt misunderstood and misinformed by professionals and struggled to communicate their pain and needs.
What are potential weaknesses in the study?
There is potential memory bias as time since pregnancy varied from 1 to 15 years. However, mothers who gave birth up to 16 years previously were included as research shows autistic women are often diagnosed at school with their children. There is also variability within participants with several not receiving a diagnosis pre-birth.
How will these findings help autistic adults now or in the future?
Participants highlighted the limited provisions and awareness of autistic women’s needs in maternity health care services. Participants suggested the value in specialist autism-trained midwives as well as experts by experience in maternity health care roles. These findings show the importance of training health care professionals in autistic women’s needs during birth, as well as effective communication and use of language. This would support professionals to provide support even when pregnant women are undiagnosed, as they can recognize specific needs during birth.
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