« J'ai simplement serré les dents pour tout surmonter » : une enquête en ligne sur les expériences des personnes autistes en matière de soins de maternité au Royaume-Uni

Titre original en anglais : “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

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Grant, A., Griffiths, C., Williams, K., & Brown, A. (2025). “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. Autism in Adulthood. https://doi.org/10.1089/aut.2024.0275

Date de publication: 12/02/2025 Ajout dans AutiHub: 05/07/2026 Type: Article Langue de l’article: Anglais
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Auteurs

Auteur·ices des publications
4
Auteur·ices de la publication identifié·es comme autistes
2 / 4 (50,0 %)
  1. Aimee Grant *
  2. Catrin Griffiths
  3. Kathryn Williams *
  4. Amy Brown

Résumé

Contexte : Il est connu que les expériences d'accouchement difficiles ont des conséquences durables sur la santé physique et mentale. Les personnes autistes sont plus susceptibles de connaître des complications obstétricales. À ce jour, les expériences des personnes autistes en matière de soins de maternité ont été peu étudiées. Nous avons cherché à explorer les expériences de soins prénatals et d'accouchement afin d'identifier les besoins et les facteurs associés au traumatisme lié à l'accouchement. Méthodes : Nous avons utilisé les médias sociaux et l'échantillonnage boule de neige pour recruter des participants à notre enquête en ligne. Les participants devaient être : autistes, âgés de plus de 18 ans, vivre au Royaume-Uni et avoir vécu une grossesse. L'analyse comprenait des statistiques descriptives et une analyse thématique réflexive. Résultats : Nous avons reçu 193 réponses utilisables. Les résultats quantitatifs ont montré que la majorité (86,4 %) des participants ont déclaré masquer leurs caractéristiques lors de la réception de soins. Les participants ont indiqué qu'ils n'étaient pas écoutés (51,7 %), étaient incompris (47,8 %) et non soutenus (43,8 %) pendant leurs soins de maternité. Plus d'un tiers (35,4 %) ne comprenaient pas la manière dont les choses leur étaient expliquées, et près de la moitié (48,9 %) ont déclaré ne pas avoir eu la possibilité de refuser les examens physiques. Notre analyse qualitative a abouti à trois thèmes généraux interdépendants. Premièrement, « les connaissances des professionnels de santé sur l'autisme » a mis en évidence que le personnel de maternité ne comprenait pas la communication et les manifestations de la douleur des personnes autistes. Deuxièmement, « les problèmes systémiques ayant une incidence sur la fourniture de soins adaptés à l'autisme » s'est concentré sur le temps et l'environnement du service comme obstacles à des soins de maternité accessibles. Troisièmement, « les répercussions des soins inaccessibles sur les personnes autistes » a décrit la manière dont ces deux thèmes se combinaient, entraînant un manque de consentement, des problèmes de sécurité, une atteinte à la confiance et des besoins non satisfaits chez les personnes autistes. Conclusions : Il est urgent d'améliorer les soins de santé dispensés aux personnes autistes qui accouchent. Une connaissance accrue de l'autisme, particulièrement axée sur la communication et les expressions de la douleur, est essentielle. La continuité des soins, des rendez-vous plus longs et des améliorations de l'environnement sensoriel bénéficieraient également aux personnes autistes utilisatrices des services de maternité.

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.

Bibliographie citée par cette référence

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Vue d’ensemble de l’inclusion dans la bibliographie

Ces indicateurs décrivent la bibliographie citée importée pour cette publication. Les métriques de références citées utilisent le total des références citées comme dénominateur. Les métriques d’auteurices cité·es indiquent si elles utilisent toutes les occurrences d’auteurices cité·es ou seulement les occurrences rattachées à des auteurices déjà intégré·es à la base de données AutiHub. Ils utilisent les rattachements mis en cache entre les auteurices cité·es et les auteurices intégré·es à la base de données AutiHub. Dernier calcul : 16/08/2026 11:30.

Références citées
55
Nombre total de références citées intégrées pour cette publication.
Références citées avec un·e auteur·ice identifié·e comme autiste
9 / 55 (16,4 %)
Occurrences d’auteur·ices cité·es identifié·es comme autistes
25 / 203 (12,3 %)
Parmi les occurrences rattachées à des auteurices intégré·es à la base de données AutiHub : 25 / 69 (36,2 %). Auteurices cité·es distinct·es identifié·es comme autistes : 11 / 171 (6,4 %).
Occurrences citées rattachées à la base AutiHub
69 / 203 (34,0 %)
Auteurices cité·es distinct·es rattaché·es : 39 / 171 (22,8 %)
Occurrences rattachées, non identifiées comme autistes
44 / 69 (63,8 %)
Parmi les seules occurrences rattachées. Sur l’ensemble des occurrences d’auteurices cité·es : 44 / 203 (21,7 %). Auteurices cité·es distinct·es rattaché·es, non identifié·es comme autistes : 28 / 39 (71,8 %).
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