« Aidez-moi à franchir les étapes dont j'ai besoin, pour vivre la vie que je veux, de façons qui fonctionnent pour moi » : perspectives d'adolescents autistes sur ce qui est important pour leur qualité de vie

Titre original en anglais : “Support Me to Take the Steps I Need, to Live the Life I Want, in Ways That Work for Me”: Perspectives of Autistic Adolescents on What is Important for Their Quality of Life

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Ambrose, K., Simpson, K., Pellicano, E., Heyworth, M., Houting, J. d., Roth, J., & Adams, D. (2026). “Support Me to Take the Steps I Need, to Live the Life I Want, in Ways That Work for Me”: Perspectives of Autistic Adolescents on What is Important for Their Quality of Life. Journal of Autism and Developmental Disorders. https://doi.org/10.1007/s10803-026-07464-4

Date de publication: 30/07/2026 Ajout dans AutiHub: 05/08/2026 Type: Article Langue de l’article: Anglais
Source OpenAlex Source éditeur (DOI) Texte intégral

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Auteurs

Auteur·ices des publications
7
Auteur·ices de la publication identifié·es comme autistes
2 / 7 (28,6 %)
  1. Kathryn Ambrose
  2. Kate Simpson
  3. Elizabeth Pellicano
  4. Melanie Heyworth *
  1. Jacquiline den Houting *
  2. Janneke Roth
  3. Dawn Adams

Résumé

Résumé Objectif La qualité de vie (QdV) est un construit subjectif, influencé par les valeurs, les priorités et les objectifs d'un individu, mais peu de recherches prennent en compte les points de vue des personnes autistes concernant ce qui est important pour mener une « bonne vie ». Cette étude aborde la question suivante : « Que décrivent les adolescents autistes comme étant important pour eux afin de mener une “bonne vie” ? ». Méthodes Quarante-deux adolescents autistes âgés de 10 à 17 ans (52,4 % de filles, 45,2 % de garçons, 2,4 % de genre non binaire) ont fait part de leurs points de vue sur ce qui est important pour leur QdV au moyen de réponses écrites ou orales, dans le cadre d'une enquête ou d'un entretien. Les adolescents autistes ont été recrutés par le biais de publicités sur les réseaux sociaux destinées aux parents. Résultats Nous avons identifié cinq thèmes reflétant les priorités des adolescents autistes : être compris et accepté, établir des liens profonds avec les autres, s'engager dans ses forces et ses passions afin d'éprouver un sentiment d'accomplissement et de développer l'estime de soi, avoir le pouvoir d'agir pour gérer ses propres besoins, et être consulté et écouté. Ces thèmes mettent en évidence des aspects spécifiques, au sein du vaste concept de QdV, qui sont les plus importants pour les adolescents autistes. Conclusion Cette étude contribue à la conceptualisation de la QdV des enfants et adolescents autistes en recueillant directement les points de vue d'adolescents autistes. Les résultats peuvent éclairer le développement de soutiens individuels et accroître la compréhension des perspectives autistes dans la recherche et la communauté, ce qui permet mieux aux adolescents autistes de mener une « bonne vie ». Les recherches futures devraient étendre ce travail afin d'inclure les enfants autistes plus jeunes et ceux ayant des besoins de soutien plus importants.

Abstract Purpose Quality of life (QoL) is a subjective construct, influenced by an individual’s values, priorities and goals, yet little research considers the views of Autistic people regarding what is important for living a ‘good life’. This study addresses the question: “What do Autistic adolescents describe is important for them to live a ‘good life’?”. Methods 42 Autistic adolescents aged 10–17 years (52.4% girls, 45.2% boys, 2.4% non-binary gender) shared their views about what is important for their QoL through written or spoken responses in either a survey or interview. Autistic adolescents were recruited via social media advertisements directed towards parents. Results We identified five themes reflecting the priorities of Autistic adolescents: being understood and accepted, connecting deeply with others, engaging in strengths and passions to experience achievement and develop self-worth, having agency to manage their own needs, and being consulted and listened to. These themes highlight specific aspects within the broad concept of QoL that are most important for Autistic adolescents. Conclusion This study adds to the conceptualisation of QoL for Autistic children and adolescents by eliciting directly the views of Autistic adolescents. The findings can inform the development of individual supports and increase understanding of Autistic perspectives in research and the community, which better enable Autistic adolescents to live a ‘good life’. Further research should extend this work to include younger Autistic children and those with higher support needs.

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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
81
Nombre total de références citées intégrées pour cette publication.
Références citées avec un·e auteur·ice identifié·e comme autiste
11 / 81 (13,6 %)
Occurrences d’auteur·ices cité·es identifié·es comme autistes
18 / 367 (4,9 %)
Parmi les occurrences rattachées à des auteurices intégré·es à la base de données AutiHub : 18 / 144 (12,5 %). Auteurices cité·es distinct·es identifié·es comme autistes : 12 / 323 (3,7 %).
Occurrences citées rattachées à la base AutiHub
144 / 367 (39,2 %)
Auteurices cité·es distinct·es rattaché·es : 104 / 323 (32,2 %)
Occurrences rattachées, non identifiées comme autistes
126 / 144 (87,5 %)
Parmi les seules occurrences rattachées. Sur l’ensemble des occurrences d’auteurices cité·es : 126 / 367 (34,3 %). Auteurices cité·es distinct·es rattaché·es, non identifié·es comme autistes : 92 / 104 (88,5 %).
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