« Vivre dans un monde qui ne nous concerne pas » : l’impact de la vie quotidienne sur la santé et le bien-être des femmes autistes et des personnes de genre divers

Titre original en anglais : ‘Living in a world that’s not about us’: The impact of everyday life on the health and wellbeing of autistic women and gender diverse people

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Grove, R., Clapham, H., Moodie, T., Gurrin, S., & Hall, G. (2023). ‘Living in a world that’s not about us’: The impact of everyday life on the health and wellbeing of autistic women and gender diverse people. Women's Health, 19, 17455057231189542-17455057231189542. https://doi.org/10.1177/17455057231189542

Date de publication: 01/01/2023 Ajout dans AutiHub: 05/07/2026 Type: Article Langue de l’article: Anglais
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Auteurs

Auteur·ices des publications
5
Auteur·ices de la publication identifié·es comme autistes
4 / 5 (80,0 %)
  1. Rachel Grove
  2. Hayley Clapham *
  3. Tess Moodie *
  4. Sarah Gurrin *
  5. Gabrielle Hall *

Résumé

CONTEXTE : Les femmes autistes et les personnes de genre divers ont des besoins spécifiques liés à leur santé physique et mentale. Elles rencontrent également davantage d’obstacles pour accéder aux services. Bien qu’il existe des récits autobiographiques des difficultés « invisibles » auxquelles les femmes autistes et les personnes de genre divers font face au quotidien, peu de recherches ont exploré la manière dont ces expériences affectent la santé et le bien-être. OBJECTIFS : Cette étude visait à comprendre les expériences quotidiennes des femmes autistes et des personnes de genre divers, ainsi que leur impact sur la santé et le bien-être. PLAN D’ÉTUDE : Des méthodes qualitatives ont été utilisées afin de recueillir des informations riches sur les expériences uniques des femmes autistes et des personnes de genre divers. MÉTHODES : Nous avons mené des entretiens semi-structurés avec 31 adultes autistes. Les données ont été analysées au moyen d’une analyse thématique réflexive. RÉSULTATS : Nous avons identifié 3 thèmes et 10 sous-thèmes. Notre premier thème décrivait « tout ce que vous devez faire pour traverser la vie », notamment la gestion des tâches domestiques, la parentalité, les besoins de santé spécifiques et les affections physiques concomitantes. Le deuxième thème présentait l’impact de « vivre dans un monde qui ne nous concerne pas », en décrivant comment le fait de naviguer dans le monde neurotypique, de gérer les attentes liées aux rôles de genre et d’essayer de s’intégrer affecte la santé mentale. Notre troisième thème présentait les effets positifs de « se défaire de toutes les couches et être moi-même », notamment l’importance de l’identification formelle, de l’exploration de l’identité et de la communauté autistes, ainsi que de l’inclusion des personnes autistes dans la recherche afin de les aider à « avoir une bonne vie selon leurs propres termes ». CONCLUSION : Cette étude a souligné l’importance de déplacer la responsabilité de la santé et du bien-être de l’individu, ainsi que l’importance des facteurs interpersonnels, communautaires, culturels, politiques et sociétaux pour assurer des résultats de santé positifs pour les femmes autistes et les personnes de genre divers. Elle a également mis en évidence des domaines permettant aux femmes autistes et aux personnes de genre divers de s’épanouir, notamment les liens avec la communauté autiste, les relations positives et le soutien affirmant l’autisme de la part des professionnels de santé.

BACKGROUND: Autistic women and gender diverse people have specific needs related to their physical and mental health. They also experience more barriers to accessing services. While there are autobiographical accounts of the 'invisible' challenges that autistic women and gender diverse people face day-to-day, there has been limited research that explores how these experiences impact health and wellbeing. OBJECTIVES: This study aimed to understand the everyday experiences of autistic women and gender diverse people, and their impact on health and wellbeing. DESIGN: Qualitative methods were used to elicit rich information about the unique experiences of autistic women and gender diverse people. METHODS: We conducted semi-structured interviews with 31 autistic adults. The data were analysed using reflexive thematic analysis. RESULTS: We identified 3 themes and 10 subthemes. Our first theme described 'all the stuff that you have to do to get through life', including managing domestic tasks, parenting, unique health needs and co-occurring physical conditions. The second theme outlined the impact of 'living in a world that's not about us', describing how navigating the neurotypical world, managing gender role expectations and trying to fit impacts on mental health. Our third theme outlined the positive impacts of 'shedding all the layers and being myself', including the importance of formal identification, exploring autistic identity and community, and including autistic people in research to support them to 'have a good life on their own terms'. CONCLUSION: This study emphasized the importance of shifting the responsibility of health and wellbeing from the individual, and the importance of interpersonal, community, cultural, policy and societal factors in ensuring positive health outcomes for autistic women and gender diverse people. It also highlighted areas that enable autistic women and gender diverse people to flourish, including autistic community connectedness, positive relationships and autistic-affirming support from health professionals.

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
93
Nombre total de références citées intégrées pour cette publication.
Références citées avec un·e auteur·ice identifié·e comme autiste
18 / 93 (19,4 %)
Occurrences d’auteur·ices cité·es identifié·es comme autistes
27 / 330 (8,2 %)
Parmi les occurrences rattachées à des auteurices intégré·es à la base de données AutiHub : 27 / 158 (17,1 %). Auteurices cité·es distinct·es identifié·es comme autistes : 18 / 274 (6,6 %).
Occurrences citées rattachées à la base AutiHub
158 / 330 (47,9 %)
Auteurices cité·es distinct·es rattaché·es : 108 / 274 (39,4 %)
Occurrences rattachées, non identifiées comme autistes
131 / 158 (82,9 %)
Parmi les seules occurrences rattachées. Sur l’ensemble des occurrences d’auteurices cité·es : 131 / 330 (39,7 %). Auteurices cité·es distinct·es rattaché·es, non identifié·es comme autistes : 90 / 108 (83,3 %).
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