A Comprehensive Toolkit to Support Self-Report Questionnaires for Autistic Adults With Cognitive Disability.

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.