« Une tempête parfaite » : expériences de la ménopause et du milieu de la vie chez les personnes autistes

Titre original en anglais : “A perfect storm”: Autistic experiences of menopause and midlife

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Brady, M. J., Jenkins, C. A., Gamble-Turner, J., Moseley, R., Rensburg, M. J. v., & Matthews, R. (2024). “A perfect storm”: Autistic experiences of menopause and midlife. Autism, 28(6), 1405-1418. https://doi.org/10.1177/13623613241244548

Date de publication: 15/04/2024 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. Miranda J. Brady
  2. Christine A. Jenkins *
  3. Julie Gamble-Turner
  1. Rachel Moseley *
  2. Margaret Janse van Rensburg
  3. Rose Matthews *

Résumé

Des recherches antérieures indiquent que la ménopause peut constituer une transition extrêmement difficile pour certaines personnes autistes. Cette étude examine comment les personnes autistes vivent la ménopause et comment elles peuvent mieux accéder aux services, au soutien et à l'information ; des Community Research Associates autistes ont joué un rôle important à chaque étape de la recherche. Des groupes de discussion en ligne et des entretiens ont été menés auprès de 24 participants autistes vivant au Canada ( n = 13) ou au Royaume-Uni ( n = 11) et ayant vécu la transition ménopausique. Les transcriptions ont été codées et analysées par quatre membres de l'équipe au moyen d'une analyse thématique réflexive. Quatre thèmes et huit sous-thèmes ont été identifiés : (1) Complexité, multiplicité et intensité des symptômes (0 sous-thème) ; (2) Expérience de vie et adversité convergeant au milieu de la vie (trois sous-thèmes) ; (3) L'importance des connaissances et du lien (deux sous-thèmes) ; et (4) Obstacles au soutien et aux soins (trois sous-thèmes). Les limites comprennent un biais potentiel de l'échantillon en faveur d'expériences difficiles de la ménopause. La majorité de notre échantillon avait reçu un diagnostic tardif d'autisme ou avait découvert son autisme tardivement, et leurs expériences pourraient ne pas être généralisables à des populations autistes plus larges. Cette recherche peut aider les personnes autistes à se préparer à la ménopause et à reconnaître les symptômes plus tôt. Entendre parler des expériences d'autres personnes peut permettre aux personnes autistes qui éprouvent des difficultés avec la ménopause de savoir qu'elles ne sont pas seules. Résumé vulgarisé Les études antérieures rapportent que la ménopause peut être une transition très difficile pour certaines personnes autistes. Cette étude porte sur la manière dont les personnes autistes vivent la ménopause et sur le soutien et les informations qui pourraient les aider. Des Community Research Associates autistes ont joué un rôle important dans la recherche et ont cosigné cet article. Nous avons organisé en ligne quatre groupes de discussion et huit entretiens avec 24 participants autistes vivant au Canada ( n = 13) ou au Royaume-Uni ( n = 11). Nous avons analysé les conversations des participants à l'aide d'une méthode appelée analyse thématique réflexive. Les participants ont décrit de nombreux défis intenses durant la ménopause. Quatre thèmes et huit sous-thèmes ont été identifiés dans l'ensemble des groupes de participants : (1) Complexité, multiplicité et intensité des symptômes (0 sous-thème) ; (2) Expérience de vie et adversité convergeant au milieu de la vie (trois sous-thèmes) ; (3) L'importance des connaissances et du lien (deux sous-thèmes) ; et (4) Obstacles au soutien et aux soins (trois sous-thèmes). Les expériences de nos participants pourraient ne pas être les mêmes que celles d'autres personnes autistes, et l'étude aurait pu inclure davantage de groupes autistes diversifiés. Toutefois, entendre parler des expériences d'autres personnes peut rassurer les personnes autistes qui éprouvent des difficultés avec la ménopause et leur faire savoir qu'elles ne sont pas seules.

Previous research indicates that menopause can be an extremely difficult transition for some autistic people. This study asks how autistic people experience menopause and how they can better access services, support and information; autistic Community Research Associates played an important role in each stage of the research. Online focus groups and interviews were conducted with 24 autistic participants who lived in Canada ( n = 13) or the United Kingdom ( n = 11) and had experience with the menopausal transition. Transcripts were coded and analysed by four team members using reflexive thematic analysis. Four themes and eight subthemes were identified: (1) Complexity, multiplicity and intensity of symptoms (0 subthemes); (2) Life experience and adversity converging at midlife (three subthemes); (3) The importance of knowledge and connection (two subthemes); and (4) Barriers to support and care (three subthemes). Limitations include a potential sample bias towards difficult experiences of menopause. The majority of our sample had a late diagnosis or discovery of autism, and their experiences might not generalize to wider autistic populations. This research may help autistic people prepare for menopause and recognize symptoms earlier. Hearing about the experiences of others may let autistic people who struggle with menopause know they are not alone. Lay abstract Previous studies report that menopause can be a very difficult transition for some autistic people. This study focuses on how autistic people experience menopause and what support and information might help them. Autistic Community Research Associates played an important role in the research and co-authored this article. We held four focus groups and eight interviews online with 24 autistic participants who lived in either Canada ( n = 13) or the United Kingdom ( n = 11). We analysed participant conversations using a method called reflexive thematic analysis. Participants described many intense challenges during menopause. Four themes and eight subthemes were identified across participant groups: (1) Complexity, multiplicity and intensity of symptoms (0 subthemes); (2) Life experience and adversity converging at midlife (three subthemes); (3) The importance of knowledge and connection (two subthemes); and (4) Barriers to support and care (three subthemes). The experiences of our participants may not be the same as other autistic people, and the study could have been more inclusive of diverse autistic groups. However, hearing about the experiences of others may provide reassurance to autistic people who struggle with menopause and let them know they are not alone.

Bibliographie citée par cette référence

Les références citées sont importées depuis des sources externes de métadonnées lorsqu’elles sont disponibles. La liste peut être partielle.

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
70
Nombre total de références citées intégrées pour cette publication.
Références citées avec un·e auteur·ice identifié·e comme autiste
17 / 70 (24,3 %)
Occurrences d’auteur·ices cité·es identifié·es comme autistes
34 / 317 (10,7 %)
Parmi les occurrences rattachées à des auteurices intégré·es à la base de données AutiHub : 34 / 180 (18,9 %). Auteurices cité·es distinct·es identifié·es comme autistes : 26 / 264 (9,8 %).
Occurrences citées rattachées à la base AutiHub
180 / 317 (56,8 %)
Auteurices cité·es distinct·es rattaché·es : 130 / 264 (49,2 %)
Occurrences rattachées, non identifiées comme autistes
146 / 180 (81,1 %)
Parmi les seules occurrences rattachées. Sur l’ensemble des occurrences d’auteurices cité·es : 146 / 317 (46,1 %). Auteurices cité·es distinct·es rattaché·es, non identifié·es comme autistes : 104 / 130 (80,0 %).
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