"I felt belittled and ridiculed for being in pain": An online survey of Autistic people's experience of care for pregnancy loss (perinatal loss) in the United Kingdom

Grant, Aimee, Griffiths, Catrin, Williams, Kathryn and Brown, Amy E 2024. "I felt belittled and ridiculed for being in pain": An online survey of Autistic people's experience of care for pregnancy loss (perinatal loss) in the United Kingdom. Midwifery 141 , 104266. 10.1016/j.midw.2024.104266

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Abstract

Around 3 % of people are Autistic; women may be under-diagnosed. Autistic people report lack of staff understanding, stigma and environmental barriers to using midwifery services. It is not known if these issues are present in perinatal loss services. To understand Autistic people's experiences of care for perinatal loss. An online survey for Autistic adults in the United Kingdom who had been pregnant, using closed and open questions. Data were analysed descriptively, using Kruskal-Wallis tests and thematically. The majority of losses appeared to be early in pregnancy. Among 67 participants, over half (58.2 %, n = 39) always sought healthcare during a perinatal loss, but 28.4 % (n = 19) never accessed care. Of those who received healthcare (n = 48; 71.6 %), over half (n = 27; 56.3 %) did not know they were Autistic at the time, and just one person told health professionals that they were Autistic. Four participants identified instances where staff were supportive or kind, but the majority of experiences were negative, with reported issues focused on communication, the way support was provided, inadequate pain relief and the hospital environment. We generated one overarching theme: "trauma". Autistic people from the UK identified significant Disability-related access issues with perinatal loss care in addition to issues reported by a general population. UK Perinatal loss services need urgent investment to be able to provide person-centred care to all. Staff supporting perinatal loss should receive neurodiversity-affirming Autism training and be aware that many Autistic people experiencing perinatal loss may not have or share a diagnosis. [Abstract copyright: Copyright © 2024 The Author(s). Published by Elsevier Ltd.. All rights reserved.]

Item Type:	Article
Date Type:	Published Online
Status:	Published
Schools:	Social Sciences (Includes Criminology and Education)
Publisher:	Elsevier
ISSN:	0266-6138
Date of First Compliant Deposit:	6 January 2025
Date of Acceptance:	12 December 2024
Last Modified:	06 Jan 2025 15:30
URI:	https://orca.cardiff.ac.uk/id/eprint/175039

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