“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✰

This publication is included in the Autistic Autism Scholarship Project. two authors of this publication are identified as autistic in the project.

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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
Publisher source (DOI) Full text OpenAlex source

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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.

Bibliography cited by this reference

Cited references are imported from external metadata sources when they are available. The list may be partial.

Cited bibliography overview

These indicators describe the bibliography cited by this publication. An author name is counted each time it appears in one cited reference, so the same person can be counted more than once. Names not yet linked to an author already present in AutiHub are treated as unknown, not as non-autistic. Last computed: 2 Oct 2026 07:50.

Cited references
54
With a DOI
45
Without a DOI, from raw bibliography text
9
14 / 54 (25.9%) cited references include at least one author identified as autistic.
References with data to complete
4 / 54 (7.4%)
References with detected author names
50 / 54 (92.6%)
Without detected author names
4
Without a structured title
4
Without a stable identifier
8
References with raw author names still to review
4
References with external metadata lookup issues
0
These indicators apply to cited references displayed on this page, after technical duplicates have been merged. A reference without a DOI can still support author statistics when a title and author names are available.
Author names detected in the cited bibliography
201
From DOI or external metadata
201
From validated raw bibliography text
0
Raw names already validated
0
Raw names still to review
4
100 / 201 (49.8%) names are linked to an author already present in AutiHub. 101 / 201 (50.2%) names are not yet linked.
Names linked to a person identified as autistic
40 / 201 (19.9%)
Calculated across all author names detected in the cited bibliography. Among names linked to an author already present in AutiHub: 40 / 100 (40.0%). Distinct people identified as autistic: 26 / 175 (14.9%).
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