« Je ne suis ni folle, ni mauvaise, ni dangereuse... simplement câblée différemment » : exploration des facteurs contribuant à une bonne qualité de vie chez les femmes autistes

Titre original en anglais : “I’m not mad, bad, and dangerous … simply wired differently”: Exploring factors contributing to good quality of life with autistic women

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Paricos, A., Sturrock, A., Twomey, K. E., & Leadbitter, K. (2024). “I’m not mad, bad, and dangerous … simply wired differently”: Exploring factors contributing to good quality of life with autistic women. Research in Autism Spectrum Disorders, 112, 102338. https://doi.org/10.1016/j.rasd.2024.102338

Date de publication: 11/02/2024 Ajout dans AutiHub: 06/07/2026 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. Arianna Paricos
  2. Alexandra Sturrock
  3. Katherine E. Twomey *
  4. Kathy Leadbitter

Résumé

La sous-représentation des femmes autistes dans la littérature académique et son incidence sur la compréhension, le diagnostic et le soutien sont de plus en plus reconnus. Des recherches antérieures ont suggéré que les femmes autistes ont une qualité de vie (QdV) inférieure à celle de la population générale. Cependant, ces résultats ont été établis à l’aide de mesures de la QdV fondées sur des normes et des priorités non autistes. Cette étude qualitative a utilisé des méthodes d’analyse thématique réflexive ascendante pour explorer la manière dont dix femmes autistes définissaient une bonne QdV, ainsi que les facteurs identifiés comme essentiels pour y parvenir, au moyen d’entretiens individuels semi-structurés. Les résultats indiquent quatre thèmes principaux représentant des voies vers une bonne QdV : un sentiment positif de soi ; le fait de se sentir soutenue ; l’autonomie ; l’inclusion. Les participantes ont noté que le fait d’être autiste n’était pas en soi un déterminant d’une QdV réduite. Au contraire, la QdV des participantes reposait sur la mesure dans laquelle elles se comprenaient elles-mêmes, les autres comprenaient leurs besoins et s’y adaptaient, ainsi que sur l’adéquation entre la personne et l’environnement. Les résultats de cette étude s’alignent sur une approche positive de la différence neurologique et ont des implications pour le diagnostic, le soutien post-diagnostique et les applications des mesures actuelles de la QdV chez les femmes autistes.

There is increasing recognition of under-representation of autistic women in the academic literature and the impact of this on understanding, diagnosis, and support. Previous research has suggested that autistic women have poorer quality of life (QoL) than the general population. However, these findings have been established through use of QoL measures based on non-autistic norms and priorities. This qualitative study used bottom-up, reflexive thematic analysis methods to explore how ten autistic women defined good QoL, and the factors identified as key to achieving this, using individual semi-structured interviews. Findings indicate four main themes that represent routes to good QoL: positive sense of self; feeling supported; autonomy; inclusion. Participants noted that being autistic itself was not a determinant of reduced QoL. Instead, participants’ QoL was underpinned by the extent to which participants understood themselves, others understood and accommodated their needs, and the person-environment fit. The findings of this study align with a positive approach to neurological difference and have implications for diagnosis, post-diagnostic support and applications of current QoL measures for autistic women.

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
59
Nombre total de références citées intégrées pour cette publication.
Références citées avec un·e auteur·ice identifié·e comme autiste
8 / 59 (13,6 %)
Occurrences d’auteur·ices cité·es identifié·es comme autistes
15 / 223 (6,7 %)
Parmi les occurrences rattachées à des auteurices intégré·es à la base de données AutiHub : 15 / 97 (15,5 %). Auteurices cité·es distinct·es identifié·es comme autistes : 13 / 192 (6,8 %).
Occurrences citées rattachées à la base AutiHub
97 / 223 (43,5 %)
Auteurices cité·es distinct·es rattaché·es : 71 / 192 (37,0 %)
Occurrences rattachées, non identifiées comme autistes
82 / 97 (84,5 %)
Parmi les seules occurrences rattachées. Sur l’ensemble des occurrences d’auteurices cité·es : 82 / 223 (36,8 %). Auteurices cité·es distinct·es rattaché·es, non identifié·es comme autistes : 58 / 71 (81,7 %).
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