Choix autodéclarés et rapportés par les aidants chez les adultes autistes : développement et validation de l’échelle AASPIRE–Choices and Decisions

Titre original en anglais : Self- and Caregiver-Reported Choice-Making in Autistic Adults: Development and Validation of the AASPIRE–Choices and Decisions Scale

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Kim, S. Y., Gillespie-Lynch, K., Kapp, S. K., Yang, L. Q., Wallington, A., Raymaker, D. M., Moura, I., McDonald, K., Maslak, J., Kripke-Ludwig, R., Joyce, A., Horner-Johnson, W., Frowner, E., Baker-Ericzén, M., & Nicolaidis, C. (2026). Self- and Caregiver-Reported Choice-Making in Autistic Adults: Development and Validation of the AASPIRE–Choices and Decisions Scale [Preprint]. openRxiv. https://doi.org/10.64898/2026.05.07.26352693

Date de publication: 10/05/2026 Ajout dans AutiHub: 06/07/2026 Type: Prépublication Langue de l’article: Anglais
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Auteurs

Auteur·ices des publications
15
Auteur·ices de la publication identifié·es comme autistes
3 / 15 (20,0 %)
  1. So Yoon Kim
  2. Kristen Gillespie-Lynch
  3. Steven K. Kapp *
  4. Liu-Qin Yang
  5. Anna Wallington
  1. Dora M Raymaker *
  2. Ian Moura
  3. Katherine McDonald
  4. Joelle Maslak *
  5. Rachel Kripke-Ludwig
  1. Andrea Joyce
  2. Willi Horner-Johnson
  3. Emanuel Frowner
  4. Mary Baker-Ericzén
  5. Christina Nicolaidis

Résumé

L’autodétermination a été évaluée comme un construit psychologique interne. Des facteurs externes peuvent également affecter l’autodétermination, mais les possibilités de faire des choix et de prendre des décisions restent sous-étudiées. Nous avons élaboré et évalué l’échelle AASPIRE-Choices and Decisions (AASPIRE-CDS), une nouvelle mesure des possibilités qu’ont les adultes autistes de faire des choix et de prendre des décisions, en utilisant une approche participative communautaire. Nous avons créé et affiné l’AASPIRE-CDS au moyen d’un processus itératif. Les données, issues du projet AASPIRE Outcomes, comprenaient 839 adultes autistes participant par auto-évaluation directe, auto-évaluation directe avec soutien et rapport des aidants (CR). Des analyses exploratoires et confirmatoires ont étayé une structure unidimensionnelle. Les analyses d’invariance de mesure ont étayé l’invariance configurale, métrique et scalaire partielle selon le type de rapport sans CR, et selon le statut de vie, avec et sans CR. L’AASPIRE-CDS a montré une forte cohérence interne, une fiabilité test-retest et une sensibilité au changement au fil du temps. Les analyses de validité convergente ont montré que des scores AASPIRE-CDS plus élevés étaient associés à une plus grande autodétermination et fluidité de communication, à une vie plus indépendante et à moins de besoins de soutien. L’AASPIRE-CDS a montré des associations plus faibles, bien que significatives, avec la qualité de vie, la santé globale et la satisfaction professionnelle que celles montrées par la mesure de l’autodétermination avec ces variables. Ce schéma suggère que les possibilités de faire des choix sont liées aux mesures couramment utilisées de l’autodétermination, mais distinctes de celles-ci. Les résultats étayent l’AASPIRE-CDS comme mesure valide et fiable des possibilités de faire des choix chez les adultes autistes, quels que soient leurs besoins de soutien, mais suggèrent la prudence dans l’interprétation des CR. Ils soulignent l’importance de soutenir la capacité des adultes autistes à faire des choix et d’évaluer les possibilités de choix parallèlement à l’autodétermination interne. Les recherches futures devraient utiliser des échantillons de CR plus importants afin d’examiner la validité des possibilités de faire des choix rapportées par les aidants.

Self-determination has been assessed as an internal psychological construct. External factors may also affect self-determination, but opportunities to make choices and decisions remain understudied. We developed and evaluated the AASPIRE-Choices and Decisions Scale (AASPIRE-CDS), a new measure of autistic adults' opportunities to make choices and decisions, using a community-based participatory approach. We created and refined the AASPIRE-CDS through an iterative process. Data, from the AASPIRE Outcomes Project, included 839 autistic adults participating through direct report, supported direct report, and caregiver report (CR). Exploratory and confirmatory analyses supported a unidimensional structure. Measurement invariance analyses supported configural, metric, and partial scalar invariance across report type without CR, and across living status, with and without CR. The AASPIRE-CDS showed high internal consistency, test-retest reliability, and responsiveness to change over time. Convergent validity analyses showed that higher AASPIRE-CDS scores were associated with greater self-determination and communication fluency, more independent living, and fewer support needs. The AASPIRE-CDS showed weaker (albeit significant) associations with quality of life, overall health, and employment satisfaction than the self-determination measure showed with these variables. This pattern suggests that opportunities for choice-making are related to, but distinct from, commonly used measures of self-determination. Findings support the AASPIRE-CDS as a valid and reliable measure of choice-making opportunities in autistic adults across support needs but suggest caution interpreting CR. They underscore the importance of supporting autistic adults' choice-making and evaluating opportunities for choice alongside internal self-determination. Future research should use larger CR samples to examine the validity of caregiver-reported choice-making opportunities.

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Références citées
61
Nombre total de références citées intégrées pour cette publication.
Références citées avec un·e auteur·ice identifié·e comme autiste
11 / 61 (18,0 %)
Occurrences d’auteur·ices cité·es identifié·es comme autistes
26 / 231 (11,3 %)
Parmi les occurrences rattachées à des auteurices intégré·es à la base de données AutiHub : 26 / 120 (21,7 %). Auteurices cité·es distinct·es identifié·es comme autistes : 14 / 178 (7,9 %).
Occurrences citées rattachées à la base AutiHub
120 / 231 (51,9 %)
Auteurices cité·es distinct·es rattaché·es : 79 / 178 (44,4 %)
Occurrences rattachées, non identifiées comme autistes
94 / 120 (78,3 %)
Parmi les seules occurrences rattachées. Sur l’ensemble des occurrences d’auteurices cité·es : 94 / 231 (40,7 %). Auteurices cité·es distinct·es rattaché·es, non identifié·es comme autistes : 65 / 79 (82,3 %).
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