How are stakeholders with autism spectrum disorder included in the social validation of augmentative and alternative communication research? A scoping review

Abstract

INTRODUCTION : Social validation or the inclusion of stakeholders in the research process is beneficial, as it may decrease bias, increases efficacy, and prevents harm. For direct stakeholders such as individuals with autism spectrum disorder (ASD), social validation has mostly included participants who do not experience significant speech, language, and communication limitations while frequently omitting individuals with ASD who have complex communication needs (CCN). The presence of CCN indicates that augmentative and alternative communication (AAC) strategies are needed for individuals to express themselves. Social validation should not be limited to being participants in an intervention but should include involvement in the research process. This requires an understanding of the current trends, levels, and mechanisms of involvement in AAC research. PURPOSE : This review aimed to identify and describe the inclusion of direct stakeholders with ASD in the social validation of AAC research. METHOD : A scoping review was conducted following the PRISMA-ScR (Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for scoping reviews) methodology to identify AAC research that included stakeholders with ASD (direct and indirect) for social validation and to evaluate their level of involvement using the Typology of Youth Participation and Empowerment pyramid framework. RESULTS : Twenty-four studies were identified. Studies primarily included indirect stakeholders (e.g., caregivers) giving in-depth perspectives, while direct stakeholders were limited to being intervention participants. CONCLUSIONS : Voices of direct stakeholders with ASD and CCN remain limited or excluded in research. Reasons for the exclusion of individuals with ASD and CCN from research and strategies for future inclusion are raised and discussed.