« Lorsque mon autisme a craqué » : une étude qualitative mettant en lumière les voix de personnes autistes sur la ménopause

Titre original en anglais : ‘When my autism broke’: A qualitative study spotlighting autistic voices on menopause

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Moseley, R., Druce, T., & Gamble-Turner, J. (2020). ‘When my autism broke’: A qualitative study spotlighting autistic voices on menopause. Autism, 24(6), 1423-1437. https://doi.org/10.1177/1362361319901184

Date de publication: 31/01/2020 Ajout dans AutiHub: 06/07/2026 Type: Article Langue de l’article: Anglais
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Auteurs

Auteur·ices des publications
3
Auteur·ices de la publication identifié·es comme autistes
1 / 3 (33,3 %)
  1. Rachel Moseley *
  2. Tanya Druce
  3. Julie Gamble-Turner

Résumé

Les femmes autistes rencontrent souvent des difficultés lors de l'apparition des menstruations, un point de transition clé dans la vie reproductive féminine. À ce jour, aucune recherche n'a examiné comment les personnes autistes traversent la transition ménopausique, ni si celle-ci pose des difficultés supplémentaires à celles déjà rencontrées par les femmes neurotypiques. Dans le cadre d'une étude participative préliminaire dans ce domaine, nous avons mené un groupe de discussion en ligne avec sept personnes autistes, âgées de 49 à 63 ans (médiane = 64,5 ans) et assignées au sexe féminin à la naissance, afin d'explorer l'état des connaissances sur la ménopause dans l'autisme, les difficultés que la ménopause pourrait entraîner, le soutien qui pourrait être nécessaire et les questions nécessitant une investigation scientifique. L'analyse thématique de la discussion a généré trois thèmes : (a) manque de connaissances et de compréhension ; (b) fissuration du masque et fonctionnement adaptatif ; et (c) trouver du soutien. Les thèmes suggéraient un manque de connaissances, de compréhension et de communication professionnelles au sujet de la ménopause chez les personnes autistes, ainsi qu'une absence de soutien. La ménopause a été décrite comme exacerbant des difficultés cognitives, sociales, émotionnelles et sensorielles préexistantes, et en générant de nouvelles. Cette étude illustre la nécessité d'accorder davantage d'attention à la manière dont les personnes autistes font face à la transition majeure de la ménopause. Résumé grand public Il est connu que les filles autistes rencontrent des difficultés lors de l'apparition des menstruations, signalant que, pendant leurs règles, leurs sensibilités sensorielles sont exacerbées, qu'il devient plus difficile de penser clairement et de contrôler leurs émotions, et qu'elles éprouvent davantage de difficultés dans la vie quotidienne et les soins personnels. Pourtant, étonnamment, on ne sait rien de la manière dont les femmes autistes vivent la transition ménopausique au milieu de la vie. Chez les femmes non autistes, la ménopause entraîne de nombreux changements physiques et des symptômes difficiles, allant des bouffées de chaleur à une augmentation de l'anxiété et de la dépression. Parce que les femmes autistes sont déjà vulnérables au suicide, à une mauvaise santé physique et mentale, et parce qu'elles peuvent déjà éprouver des difficultés à planifier, à contrôler leurs émotions et à faire face au changement, la ménopause peut constituer une période particulièrement difficile. Pourtant, pas une seule étude n'existe sur la ménopause dans l'autisme ; nous avons donc mené une discussion en ligne (groupe de discussion) avec sept femmes autistes. Elles ont confirmé que l'on sait très peu de choses sur la ménopause chez les personnes autistes, que très peu de soutien est disponible et que la ménopause pourrait être particulièrement difficile pour les personnes autistes. Des difficultés liées à l'autisme, notamment la sensibilité sensorielle, les relations sociales avec les autres et la communication des besoins, auraient empiré pendant la ménopause, souvent de façon si spectaculaire que certaines participantes ont suggéré qu'elles trouvaient impossible de continuer à masquer leurs difficultés. Les participantes ont également signalé avoir eu des crises extrêmes, ressenti de l'anxiété et de la dépression, et eu des pensées suicidaires. Cette étude souligne l'importance que les professionnels accordent une attention à la ménopause dans l'autisme et examine de futures orientations de recherche.

Autistic women often struggle with the onset of menstruation, a key transition point in the female reproductive lifespan. Presently, there is no research investigating how autistic people navigate the menopausal transition, and whether it poses additional challenges in addition to those already faced by neurotypical women. As a preliminary participatory study in this area, we conducted an online focus group with seven autistic individuals, aged 49–63 years (median = 64.5 years) and assigned female at birth, to explore the state of knowledge about the menopause in autism, difficulties the menopause might bring, support that might be needed, and what questions require scientific investigation. Thematic analysis of the discussion generated three themes: (a) lack of knowledge and understanding; (b) cracking the mask and adaptive functioning; and (c) finding support. Themes suggested a lack of professional knowledge, understanding and communication about menopause for autistic people, and an absence of support. Menopause was discussed as heightening pre-existing and generating new cognitive, social, emotional and sensory difficulties. This study illustrates the need for greater focus of attention towards how autistic people cope with the major life transition of menopause. Lay abstract Autistic girls are known to struggle with the onset of menstruation, reporting that during their period, sensory sensitivities are heightened, it becomes more difficult to think clearly and control their emotions and they struggle more with everyday life and self-care. Yet surprisingly, nothing is known about how autistic women handle the menopausal transition in midlife. In non-autistic women, the menopause brings many physical changes and challenging symptoms from hot flushes to feeling more anxious and depressed. Because autistic women are already vulnerable to suicide, poor physical and mental health, and because they may already struggle with planning, controlling their emotions and coping with change, the menopause may be an especially challenging time. Yet, not one single study exists on the menopause in autism, so we conducted an online discussion (focus group) with seven autistic women. They confirmed that very little is known about menopause in autistic people, very little support is available and that menopause might be especially difficult for autistic people. Autism-related difficulties (including sensory sensitivity, socializing with others and communicating needs) were reported to worsen during the menopause, often so dramatically that some participants suggested they found it impossible to continue to mask their struggles. Participants also reported having extreme meltdowns, experiencing anxiety and depression, and feeling suicidal. This study highlights how important it is that professionals pay attention to menopause in autism, and discusses future research directions.

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 11:31.

Références citées
118
Nombre total de références citées intégrées pour cette publication.
Références citées avec un·e auteur·ice identifié·e comme autiste
4 / 118 (3,4 %)
Occurrences d’auteur·ices cité·es identifié·es comme autistes
7 / 471 (1,5 %)
Parmi les occurrences rattachées à des auteurices intégré·es à la base de données AutiHub : 7 / 125 (5,6 %). Auteurices cité·es distinct·es identifié·es comme autistes : 6 / 407 (1,5 %).
Occurrences citées rattachées à la base AutiHub
125 / 471 (26,5 %)
Auteurices cité·es distinct·es rattaché·es : 86 / 407 (21,1 %)
Occurrences rattachées, non identifiées comme autistes
118 / 125 (94,4 %)
Parmi les seules occurrences rattachées. Sur l’ensemble des occurrences d’auteurices cité·es : 118 / 471 (25,1 %). Auteurices cité·es distinct·es rattaché·es, non identifié·es comme autistes : 80 / 86 (93,0 %).
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