Récits de construction de sens de femmes autistes diagnostiquées à l'âge adulte : une revue systématique de la recherche qualitative

Titre original en anglais : Sense-making narratives of autistic women diagnosed in adulthood: a systematic review of the qualitative research

Cette publication est incluse dans le projet « Contributions académiques de personnes autistes sur l’autisme ». un auteur·ice de cette publication est identifié·e comme autiste dans le projet.

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Kelly, C., Sharma, S., Jieman, A. T., & Ramon, S. (2022). Sense-making narratives of autistic women diagnosed in adulthood: a systematic review of the qualitative research. Disability & Society, 39(3), 663-695. https://doi.org/10.1080/09687599.2022.2076582

Date de publication: 20/05/2022 Ajout dans AutiHub: 07/10/2026 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
1 / 4 (25,0 %)
  1. Caroline Kelly *
  2. Shivani Sharma
  3. Anna-Theresa Jieman
  4. Shulamit Ramon

Résumé

Peu d'études qualitatives ont exploré la vie de femmes autistes diagnostiquées à l'âge adulte, bien que ces connaissances soient essentielles pour éclairer la compréhension de l'intersection entre l'autisme et le genre. Cette revue systématique a été entreprise afin de synthétiser les données qualitatives disponibles sur l'expérience vécue de femmes autistes diagnostiquées à l'âge adulte. Les récits de 50 femmes issus de neuf études qualitatives ont été synthétisés à l'aide d'une analyse thématique, et quatre thèmes de niveau supérieur ont été identifiés : vouloir « s'intégrer » ; donner un sens aux expériences passées ; développer une nouvelle « identité autiste » ; et les obstacles au soutien. Les femmes autistes ont passé de nombreuses années sans diagnostic ni soutien spécifique à l'autisme, se sont senties incomprises et ont connu l'exclusion sociale. Après leur diagnostic, elles ont reconfiguré ces expériences en nouveaux « récits de construction de sens », ont utilisé les médias sociaux pour entrer en contact avec d'autres personnes autistes et ont développé des identités autistes affirmant la neurodiversité. Les études suggéraient que les professionnels de la santé et des services sociaux n'étaient pas toujours en mesure de reconnaître, d'orienter, de diagnostiquer et de soutenir efficacement les femmes autistes. Points d'intérêt Dans l'enfance, les femmes autistes ayant participé aux neuf études examinées se souvenaient de s'être senties « bizarres » ou « extraterrestres » et d'avoir été victimes de harcèlement en raison de leurs difficultés à socialiser. Ces participantes imitaient leurs amies plus « faciles à vivre » dans les situations sociales afin de sauver les apparences et de donner l'impression qu'elles maîtrisaient la situation. Après leur diagnostic, les femmes autistes se sentaient davantage capables d'être elles-mêmes, plutôt que d'essayer d'être la personne « idéale » que les autres attendaient d'elles. Les femmes ayant participé aux études estimaient que, si elles avaient été diagnostiquées pendant l'enfance, elles auraient mieux fait face aux situations dangereuses qu'elles avaient rencontrées au cours de leur vie. La plupart des femmes des études se sentaient fières de leur identité autiste et de la réussite qu'elles avaient obtenue, malgré le nombre de difficultés auxquelles elles avaient été confrontées.

Few qualitative studies have explored the lives of autistic women diagnosed in adulthood, despite this knowledge being essential to inform awareness of the intersection of autism and gender. This systematic review was undertaken to synthesise available qualitative evidence on the lived experience of autistic women diagnosed in adulthood. The accounts of 50 women from nine qualitative studies were synthesised using thematic analysis and four super-ordinate themes were identified: wanting to ‘fit in’; making sense of past experiences; developing a new ‘autistic identity’; and barriers to support. The autistic women spent many years without a diagnosis or autism-specific support, felt misunderstood, and experienced social exclusion. Following their diagnosis, they reframed these experiences into new ‘sense-making narratives’, used social media to contact other autistic people, and developed neurodiverse-affirming autistic identities. The studies suggested that health and social care professionals were not always able to recognise, refer, diagnose, and support autistic women effectively. Points of interestIn childhood, the autistic women who participated in the nine reviewed studies remembered feeling that they were ‘weird’ or ‘alien’ and being bullied due to their difficulties with socialisingThese participants imitated their more ‘easy-going’ friends in social situations to keep up appearances and look as if they were in controlAfter their diagnosis, the autistic women felt more able to be themselves, rather than trying to be the ‘ideal’ person that others expected them to beThe women who participated in the studies believed that, if they had been diagnosed in childhood, they would have coped better with dangerous situations they had encountered during their livesMost of the women in the studies felt proud of their autistic identity and the success they had achieved, despite the number of challenges they had faced

Bibliographie citée par cette référence

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Vue d’ensemble de la bibliographie citée

Ces indicateurs décrivent la bibliographie citée par cette publication. Un nom d’auteurice est compté chaque fois qu’il apparaît dans une référence citée : une même personne peut donc être comptée plusieurs fois. Les noms qui ne sont pas encore associés à un·e auteurice déjà présent·e dans AutiHub sont traités comme inconnus, pas comme non autistes. Dernier calcul : 17/10/2026 01:28.

Références citées
191
Avec un DOI
142
Sans DOI, à partir du texte brut de la bibliographie
45
32 / 191 (16,8 %) références citées comprennent au moins une personne identifiée comme autiste.
Références avec données à compléter
6 / 191 (3,1 %)
Références avec noms d’auteurices détectés
185 / 191 (96,9 %)
Sans nom d’auteurice détecté
6
Sans titre structuré
4
Sans identifiant stable
37
Références avec noms bruts d’auteurices restant à vérifier
2
Références avec problème de récupération des métadonnées externes
2
Ces indicateurs portent sur les références citées affichées sur cette page, après fusion des doublons techniques. Une référence sans DOI peut quand même soutenir les statistiques d’auteurices lorsqu’un titre et des noms d’auteurices sont disponibles.
Noms d’auteurices détectés dans la bibliographie citée
383
À partir du DOI ou de métadonnées externes
383
À partir du texte brut validé de la bibliographie
0
Noms bruts déjà validés
0
Noms bruts restant à vérifier
2
136 / 383 (35,5 %) noms sont associés à un·e auteurice déjà présent·e dans AutiHub. 247 / 383 (64,5 %) noms ne sont pas encore associés.
Noms associés à une personne identifiée comme autiste
49 / 383 (12,8 %)
Calculé sur l’ensemble des noms d’auteurices détectés dans la bibliographie citée. Parmi les noms associés à un·e auteurice déjà présent·e dans AutiHub : 49 / 136 (36,0 %). Personnes distinctes identifiées comme autistes : 34 / 336 (10,1 %).
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