Journal of applied research in intellectual disabilities : JARID · 2026
A Comprehensive Toolkit to Support Self-Report Questionnaires for Autistic Adults With Cognitive Disability.
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Caron Vicky, Courcy Isabelle, Soulières Isabelle
Аннотация
OBJECTIVES: Autistic individuals with cognitive disability are underrepresented in research using self-report measures. This study aimed to develop a toolkit of customizable accommodations to facilitate self-report and to explore its usability through implementation with quality of life (QoL) questionnaires.
METHODS: A consultation process in three rounds was conducted with 10 experts in autism and/or cognitive disability to identify accommodations. The resulting accommodations were implemented with QoL questionnaires (WHOQoL-BREF-ID, WHOQoL-DIS-ID, ASQoL). Twenty-two autistic participants with cognitive disability, accompanied by a parent, completed the questionnaires. Feedback interviews explored participants' experiences with the accommodations.
RESULTS: Sixty-four accommodations and a cross-cutting concern: the need for a flexible protocol were retained in the toolkit. Feedback supported the usefulness of several accommodations while highlighting areas for improvement.
CONCLUSIONS: This toolkit facilitates self-report among autistic individuals with cognitive disabilities, which is crucial for valid QoL assessments and development of relevant services.
METHODS: A consultation process in three rounds was conducted with 10 experts in autism and/or cognitive disability to identify accommodations. The resulting accommodations were implemented with QoL questionnaires (WHOQoL-BREF-ID, WHOQoL-DIS-ID, ASQoL). Twenty-two autistic participants with cognitive disability, accompanied by a parent, completed the questionnaires. Feedback interviews explored participants' experiences with the accommodations.
RESULTS: Sixty-four accommodations and a cross-cutting concern: the need for a flexible protocol were retained in the toolkit. Feedback supported the usefulness of several accommodations while highlighting areas for improvement.
CONCLUSIONS: This toolkit facilitates self-report among autistic individuals with cognitive disabilities, which is crucial for valid QoL assessments and development of relevant services.