“I Just Gritted My Teeth to Get Through It All”: An Online Survey of Autistic People’s Experiences of Maternity Care in the United Kingdom

Authors

Abstract

Background: Difficult birth experiences are known to have long-lasting implications for physical and mental health. Autistic people are more likely to experience obstetric complications. To date, Autistic people’s experiences of maternity care have been underexplored. We aimed to explore experiences of antenatal and birth care to identify needs and factors associated with birth trauma. Methods: We used social media and snowball sampling to recruit for our online survey. Participants were required to be: Autistic, aged >18 years, living in the United Kingdom, and to have experienced pregnancy. Analysis included descriptive statistics and reflexive thematic analysis. Results: We received 193 usable responses. Quantitative results showed that the majority (86.4%) of participants reported masking when receiving care. Participants reported that they were not listened to (51.7%), misunderstood (47.8%), and unsupported (43.8%) during their maternity care. Over a third (35.4%) did not understand the way things were explained to them, and nearly half (48.9%) reported not being given the option to decline physical examinations. Our qualitative analysis resulted in three overarching themes that are interrelated. First, “health professionals’ knowledge of Autism” highlighted that maternity staff did not understand Autistic communication and pain presentations. Second, “systemic issues impacting on providing Autism-friendly care” focused on time and the ward environment as barriers to accessible maternity care. Third, “impacts of inaccessible care on Autistic people” described the way in which these two themes came together, resulting in lack of consent, safety issues, breached trust, and unmet needs for Autistic people. Conclusions: There is an urgent need for improvements in the health care given to Autistic birthing people. Increased knowledge of Autism, particularly focused on communication and pain expressions, is essential. Continuity of care, longer appointment times, and improvements to the sensory environment would also benefit Autistic maternity service users.

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