Vers la compréhension et le renforcement de l'autodétermination : une exploration qualitative auprès d'adultes autistes sans déficience intellectuelle concomitante

Titre original en anglais : Toward understanding and enhancing self-determination: a qualitative exploration with autistic adults without co-occurring intellectual disability

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Thompson-Hodgetts, S., Ryan, J. G., Coombs, E. C., Brown, H. M., Xavier, A., Devlin, C., Lee, A., Kedmy, A., & Borden, A. (2023). Toward understanding and enhancing self-determination: a qualitative exploration with autistic adults without co-occurring intellectual disability. Frontiers in Psychiatry, 14, 1250391-1250391. https://doi.org/10.3389/fpsyt.2023.1250391

Date de publication: 08/09/2023 Ajout dans AutiHub: 05/07/2026 Type: Article Langue de l’article: Anglais
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Auteurs

Auteur·ices des publications
9
Auteur·ices de la publication identifié·es comme autistes
3 / 9 (33,3 %)
  1. Sandy Thompson-Hodgetts
  2. Jacalyn G. Ryan *
  3. Emily C. Coombs *
  4. Heather M. Brown *
  5. Adrian Xavier
  1. Christina Devlin
  2. Austin Lee
  3. Adam Kedmy
  4. Anne Borden

Résumé

Introduction : L'autodétermination est un droit humain fondamental positivement associé à la qualité de vie. Cependant, il est rapporté que les personnes autistes sont moins autodéterminées que les personnes non autistes. Nous visions à (1) comprendre ce que l'autodétermination signifie pour les personnes autistes de leur point de vue, (2) explorer leurs perceptions des obstacles actuels à l'autodétermination, et (3) apprendre des personnes autistes comment elles souhaiteraient être soutenues pour être autodéterminées. Méthodes : Des entretiens semi-structurés ont été menés auprès de 19 adultes autistes sans déficience intellectuelle concomitante. Les données ont été analysées par trois chercheurs autistes et deux chercheurs non autistes au moyen d'un processus itératif de familiarisation avec les données, de codage et d'élaboration de thèmes, éclairé par l'analyse thématique réflexive. Des Autistic Community Partners (ACP) ont également participé tout au long de l'étude et ont fourni des retours substantiels sur l'ensemble des méthodes et des résultats. Résultats : L'autodétermination avait la même signification pour les personnes autistes que pour les personnes non autistes. Plus précisément, les participants ont évoqué le fait d'avoir la possibilité et le soutien de faire des choix et de prendre des décisions dans la vie sans contrôle inutile de la part d'autrui. Les expériences d'autodétermination étaient centrées sur : (1) le manque de possibilités, influencé par les attentes capacitistes et la discrimination, et (2) les différences de traitement exécutif qui interféraient avec les choix et la prise de décision. Les domaines de soutien souhaités concernaient l'offre de possibilités de (1) faire des choix et exercer son autonomie, (2) être soutenu pour ne plus masquer ses traits et être valorisé en tant que soi autiste authentique, et (3) l'offre d'un soutien pragmatique pour les différences de traitement exécutif. Conclusion : Les adultes autistes désirent être autodéterminés et peuvent s'épanouir avec un soutien, tel qu'ils le déterminent comme étant approprié, ce qui peut différer du soutien couramment offert ou recherché par les personnes non autistes. Bien qu'un soutien individualisé ait été évoqué, le soutien idéal souhaité consistait en une société inclusive qui valorise et respecte leur neurodivergence, plutôt que d'imposer des attentes capacitistes. Une société inclusive n'est réalisable que par la réduction, ou l'élimination, de la stigmatisation et des préjugés envers les personnes autistes.

Introduction: Self-determination is a fundamental human right positively related to quality of life. However, Autistic people are reported to be less self-determined than non-autistic people. We aimed to (1) understand what self-determination means to Autistic people from their perspective, (2) explore their perceptions of current barriers to being self-determined, and (3) learn from Autistic people about how they would like to be supported to be self-determined. Methods: Semi-structured interviews were done with 19 Autistic adults without co-occurring intellectual disability. Data were analyzed by three Autistic and two non-autistic researchers through an iterative process of data familiarization, coding, and theme development, informed by reflexive thematic analysis. Autistic Community Partners (ACP) were also engaged throughout the study, and provided substantive feedback on all methods and results. Results: Self-determination held the same meaning for Autistic people as non-autistic people. More specifically, participants discussed having the opportunity and support to make choices and decisions in life without unnecessary control from others. Experiences of self-determination were centered around: (1) lack of opportunity, influenced by ableist expectations and discrimination, and (2) executive processing differences that interfered with choice and decision-making. Desired areas of support related to providing opportunities to (1) make choices and exert autonomy, (2) be supported to unmask and be valued as one's authentic Autistic self, and (3) offering pragmatic support for executive processing differences. Conclusion: Autistic adults desire to be self-determined and can flourish with support, as they determine to be appropriate, which might look different from support commonly offered or sought by non-autistic people. Although individualized support was discussed, the ideal desired support was for an inclusive society that values and respects their neurodivergence, rather than imposing ableist expectations. An inclusive society is only achievable through reduced (or eliminated) stigma and prejudice against Autistic people.

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 11:30.

Références citées
55
Nombre total de références citées intégrées pour cette publication.
Références citées avec un·e auteur·ice identifié·e comme autiste
6 / 55 (10,9 %)
Occurrences d’auteur·ices cité·es identifié·es comme autistes
14 / 170 (8,2 %)
Parmi les occurrences rattachées à des auteurices intégré·es à la base de données AutiHub : 14 / 54 (25,9 %). Auteurices cité·es distinct·es identifié·es comme autistes : 14 / 150 (9,3 %).
Occurrences citées rattachées à la base AutiHub
54 / 170 (31,8 %)
Auteurices cité·es distinct·es rattaché·es : 49 / 150 (32,7 %)
Occurrences rattachées, non identifiées comme autistes
40 / 54 (74,1 %)
Parmi les seules occurrences rattachées. Sur l’ensemble des occurrences d’auteurices cité·es : 40 / 170 (23,5 %). Auteurices cité·es distinct·es rattaché·es, non identifié·es comme autistes : 35 / 49 (71,4 %).
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