“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✰

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Grant, A., Griffiths, C., Williams, K., & Brown, A. (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. https://doi.org/10.1016/j.midw.2024.104266

Publication date: 13 Dec 2024 Added to AutiHub: 5 Jul 2026 Type: Article Article language: English
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Authors

Publication authors
4
Publication authors identified as autistic
2 / 4 (50.0%)
  1. Aimee Grant *
  2. Catrin Griffiths
  3. Kathryn Williams *
  4. Amy Brown

Abstract

BACKGROUND: 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. AIM: To understand Autistic people's experiences of care for perinatal loss. METHODS: 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. RESULTS: 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". CONCLUSION: 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.

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These indicators describe the cited bibliography imported for this publication. Cited-reference metrics use the cited-reference total as denominator. Cited-author metrics state whether they use all cited-author occurrences or only occurrences linked to authors already integrated in the AutiHub database. They use cached links between cited authors and authors integrated in the AutiHub database. Last computed: 16 Aug 2026 11:30.

Cited references
54
Total cited references integrated for this publication.
Cited references with an identified autistic author
12 / 54 (22.2%)
Cited author occurrences identified as autistic
35 / 201 (17.4%)
Among occurrences linked to AutiHub author records: 35 / 95 (36.8%). Distinct cited authors identified as autistic: 21 / 175 (12.0%).
Cited author occurrences linked to AutiHub author records
95 / 201 (47.3%)
Distinct linked cited authors: 72 / 175 (41.1%)
Linked cited-author occurrences not identified as autistic
60 / 95 (63.2%)
Among linked cited-author occurrences only. Across all cited-author occurrences: 60 / 201 (29.9%). Distinct linked cited authors not identified as autistic: 51 / 72 (70.8%).
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