Qu'est-ce qui compte le plus ? Une exploration de la qualité de vie à travers les expériences quotidiennes de jeunes et d'adultes autistes

Titre original en anglais : What Matters Most? An Exploration of Quality of Life Through the Everyday Experiences of Autistic Young People and Adults

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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Merrington, H., gibbs, v., Haas, K., Clark, T., Robinson, A., AlAnsari, M., & Pellicano, E. (2024). What Matters Most? An Exploration of Quality of Life Through the Everyday Experiences of Autistic Young People and Adults. Autism in Adulthood, 7(3), 312-323. https://doi.org/10.1089/aut.2023.0127

Date de publication: 12/04/2024 Ajout dans AutiHub: 23/09/2026 Type: Article Langue de l’article: Anglais
Source éditeur (DOI) Texte intégral Source OpenAlex

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Auteurs

Auteur·ices des publications
7
Auteur·ices de la publication identifié·es comme autistes
1 / 7 (14,3 %)
  1. Heidi Merrington
  2. vicki gibbs
  3. Kaaren Haas
  4. Trevor Clark
  1. Ainslie Robinson *
  2. Mustafa AlAnsari
  3. Elizabeth Pellicano

Résumé

Contexte : La qualité de vie (QdV) des personnes autistes est systématiquement rapportée comme étant faible par rapport à celle de la population générale. On sait toutefois peu de choses sur la manière dont les personnes autistes vivent la QdV selon leur propre perspective et sur les façons dont elles souhaiteraient qu'elle soit améliorée. Cette étude qualitative, menée en collaboration avec des personnes autistes, visait à comprendre comment les jeunes et les adultes autistes définissent une bonne vie et ce qui les aide ou les empêche d'atteindre une bonne QdV. Méthodes : Nous avons mené des entretiens approfondis semi-structurés avec 34 adultes autistes et 14 adolescents autistes sur leurs expériences de la vie quotidienne concernant différents aspects de la QdV, notamment la santé physique, les besoins sensoriels, la santé mentale, l'argent, le domicile, les transports, les loisirs, les liens sociaux, l'acceptation et l'inclusion, le fait de décider de sa propre vie et les perceptions de l'avenir. Nous avons codé les transcriptions dans NVivo et les avons analysées au moyen d'une analyse thématique réflexive. Résultats : Nous avons identifié quatre thèmes : deux thèmes décrivant ce qu'une bonne QdV signifiait pour nos participants, ainsi que les aspects de leur vie qui favorisaient une bonne QdV : « se sentir bien » et « être moi-même dans le monde » ; et deux thèmes décrivant les obstacles à l'atteinte d'une bonne QdV : « épuisement et accablement » et « les expériences négatives façonnent les perceptions ». Discussion : Ces résultats soulignent la nécessité de considérer la QdV des personnes autistes dans le contexte de leurs réalités quotidiennes. L'amélioration de la QdV ne pourra être obtenue qu'en se concentrant sur ces réalités et en fournissant des adaptations et des soutiens afin de créer des environnements plus inclusifs.

Background: The quality of life (QoL) of Autistic people is consistently reported to be poor compared with the general population. Little is known, however, about how Autistic people experience QoL from their perspectives and the ways they would like it to be enhanced. This qualitative study, conducted in collaboration with Autistic people, sought to understand how Autistic young people and adults define a good life and what helps and hinders them from achieving a good QoL. Methods: We conducted semi-structured in-depth interviews with 34 Autistic adults and 14 Autistic adolescents about their everyday life experiences of different aspects of QoL, including physical health, sensory needs, mental health, money, home, transport, leisure, social connections, acceptance, and inclusion, being in charge of one's life and perceptions of the future. We coded transcripts in NVivo and analyzed them using reflexive thematic analysis. Results: We identified four themes: two themes that described what a good QoL meant for our participants along with aspects of their lives that facilitated a good QoL: “feeling good” and “being myself in the world”; and two themes that described barriers to achieving a good QoL: “exhaustion and overwhelm” and “negative experiences shape perceptions.” Discussion: These findings highlight the need to consider Autistic people's QoL within the context of their everyday realities. Enhancing QoL will only be achieved through focusing on these realities and through the provision of adaptations and supports to create more inclusive environments.

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 : 02/10/2026 07:50.

Références citées
98
Avec un DOI
96
Sans DOI, à partir du texte brut de la bibliographie
2
23 / 98 (23,5 %) références citées comprennent au moins une personne identifiée comme autiste.
Références avec données à compléter
0 / 98 (0,0 %)
Références avec noms d’auteurices détectés
98 / 98 (100,0 %)
Sans nom d’auteurice détecté
0
Sans titre structuré
0
Sans identifiant stable
2
Références avec noms bruts d’auteurices restant à vérifier
0
Références avec problème de récupération des métadonnées externes
0
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
424
À partir du DOI ou de métadonnées externes
424
À partir du texte brut validé de la bibliographie
0
Noms bruts déjà validés
0
Noms bruts restant à vérifier
0
273 / 424 (64,4 %) noms sont associés à un·e auteurice déjà présent·e dans AutiHub. 151 / 424 (35,6 %) noms ne sont pas encore associés.
Noms associés à une personne identifiée comme autiste
85 / 424 (20,0 %)
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 : 85 / 273 (31,1 %). Personnes distinctes identifiées comme autistes : 63 / 346 (18,2 %).
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