« En difficulté depuis des années » : une enquête internationale sur les expériences de la ménopause chez les personnes autistes

Titre original en anglais : “Struggling for Years”: An international survey on Autistic experiences of menopause

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Jenkins, C. A., Moseley, R., Matthews, R., Rensburg, M. J. v., Gamble-Turner, J., & Brady, M. J. (2024). “Struggling for Years”: An international survey on Autistic experiences of menopause. Neurodiversity, 2. https://doi.org/10.1177/27546330241299366

Date de publication: 01/02/2024 Ajout dans AutiHub: 06/07/2026 Type: Article Langue de l’article: Anglais
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Auteurs

Auteur·ices des publications
6
Auteur·ices de la publication identifié·es comme autistes
3 / 6 (50,0 %)
  1. Christine A. Jenkins *
  2. Rachel Moseley *
  3. Rose Matthews *
  1. Margaret Janse van Rensburg
  2. Julie Gamble-Turner
  3. Miranda J. Brady

Résumé

Des recherches émergentes suggèrent que la ménopause peut constituer une transition difficile pour certaines personnes autistes. Cette enquête internationale coproduite a exploré les facteurs susceptibles de rendre la ménopause plus difficile pour les personnes autistes, tels que le manque de sensibilisation à la ménopause et à l’autisme ; en outre, nous avons cherché à explorer le soutien dont les personnes autistes avaient besoin et ce qui pouvait les aider à faire face et même à s’épanouir pendant cette période. Nous avons utilisé une approche mixte pour analyser les réponses quantitatives et qualitatives de 508 participants autistes. Les données quantitatives et qualitatives ont toutes deux étayé des relations entre le manque de sensibilisation à la ménopause et à l’autisme et les difficultés globales pendant la ménopause. Les participants autistes souhaitaient davantage d’informations appropriées et spécifiques aux personnes autistes sur la ménopause, et percevaient le manque de sensibilisation des cliniciens à la fois à la ménopause et à l’autisme comme des obstacles aux soins et au soutien. Enfin, les participants ont rapporté avoir découvert des moyens de faire face et même de s’épanouir pendant la ménopause grâce à la connaissance de soi et à l’acceptation de soi. Une meilleure sensibilisation à l’autisme et l’accès à des informations sur la ménopause spécifiques aux personnes autistes sont importants pour aider les personnes autistes à traverser la transition de la ménopause. Résumé grand public Nous pensons que de nombreuses personnes autistes peuvent rencontrer des difficultés avec la ménopause. Cependant, nous savons très peu de choses sur les facteurs susceptibles de rendre la ménopause plus difficile pour les personnes autistes, et sur les éléments qui pourraient les aider pendant cette transition. Notre enquête en ligne, coproduite avec des personnes autistes, a exploré si un manque de sensibilisation à la ménopause et à l’autisme pouvait conduire à une expérience de la ménopause plus difficile. Nous avons également cherché à comprendre le type de soutien et d’informations dont les personnes autistes ont besoin pendant la ménopause, et ce qui, le cas échéant, a aidé les personnes autistes pendant la ménopause à faire face et même à s’épanouir au cours de cette transition de vie. Nous avons reçu 508 réponses exploitables de participants autistes dans 24 pays différents. Dans l’ensemble, l’étude a mis en évidence une relation entre le manque de sensibilisation à la ménopause et la difficulté de la ménopause : c’est-à-dire que les personnes qui avaient moins de connaissances sur la ménopause avaient tendance à vivre une période plus difficile. L’étude a également montré que le manque de connaissance de son propre autisme au début de la ménopause était associé à une expérience de la ménopause plus difficile. Les participants ont rapporté qu’ils auraient souhaité avoir davantage d’informations appropriées et spécifiques aux personnes autistes sur la ménopause avant son début. Ils ont également indiqué qu’un manque d’informations et de formation parmi les cliniciens concernant à la fois la ménopause et l’autisme constituait des obstacles au soutien. Enfin, une plus grande connaissance de soi et acceptation de soi, parmi d’autres mécanismes d’adaptation, ont aidé les participants. Nos résultats mettent en évidence les lacunes en matière de connaissances et de soutien pour les personnes autistes pendant la ménopause. Ils soulignent que les connaissances sur la ménopause, et sur son propre autisme, sont extrêmement importantes. Ils mettent également en évidence des stratégies d’adaptation que certaines personnes autistes ont trouvées utiles.

Emerging research suggests that menopause can be a difficult transition for some Autistic people. This international co-produced survey explored factors that might make menopause harder for Autistic people, such as lack of menopause and autism awareness; moreover, we aimed to explore what support Autistic people needed and what could help them cope and even flourish during this time. We employed a mixed-methods approach to analyze quantitative and qualitative responses from 508 Autistic participants. Both the quantitative and qualitative data supported relationships between lack of menopause and autism awareness and overall difficulties during menopause. Autistic participants wanted more appropriate and Autistic-specific information about menopause, and perceived lack of clinician awareness about both menopause and autism as barriers to care and support. Finally, participants reported discovery of ways to cope and even flourish during menopause through self-awareness and self-acceptance. Better awareness of autism and access to Autistic-specific menopause information is important in helping Autistic people transition through menopause. Lay abstract We believe that many Autistic people may struggle with menopause. However, we know very little about factors that might make menopause more difficult for Autistic people, and things that might help them through this transition. Our online survey, co-produced with Autistic people, explored whether a lack of awareness about menopause and autism might lead to a more difficult menopause experience. We also aimed to understand what kind of support and information Autistic people need in menopause, and what, if anything, helped Autistic people in menopause cope and even flourish through this life transition. We received 508 usable responses from Autistic participants in 24 different countries. Overall, the study found a relationship between lack of menopause awareness and difficulty of menopause: i.e., that those who had less knowledge about menopause tended to have a harder time. The study also found that lack of awareness of one’s autism at the start of menopause was associated with a more difficult menopause experience. Participants reported that they wished they had had more appropriate and autistic-specific information about menopause before it started. They also indicated that a lack of information and training amongst clinicians about both menopause and autism were barriers to support. Finally, greater self-awareness and self-acceptance amongst other coping mechanisms helped participants. Our findings highlight where there are gaps in knowledge and support for Autistic people during menopause. They highlight that knowledge about menopause, and about one’s autism, are extremely important. They also highlight coping strategies that some Autistic people have found helpful.

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
59
Nombre total de références citées intégrées pour cette publication.
Références citées avec un·e auteur·ice identifié·e comme autiste
11 / 59 (18,6 %)
Occurrences d’auteur·ices cité·es identifié·es comme autistes
26 / 345 (7,5 %)
Parmi les occurrences rattachées à des auteurices intégré·es à la base de données AutiHub : 26 / 107 (24,3 %). Auteurices cité·es distinct·es identifié·es comme autistes : 18 / 317 (5,7 %).
Occurrences citées rattachées à la base AutiHub
107 / 345 (31,0 %)
Auteurices cité·es distinct·es rattaché·es : 80 / 317 (25,2 %)
Occurrences rattachées, non identifiées comme autistes
81 / 107 (75,7 %)
Parmi les seules occurrences rattachées. Sur l’ensemble des occurrences d’auteurices cité·es : 81 / 345 (23,5 %). Auteurices cité·es distinct·es rattaché·es, non identifié·es comme autistes : 62 / 80 (77,5 %).
2 entrées de bibliographie citée n’ont pas pu être entièrement enrichies à partir des métadonnées DOI.
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