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.

The involvement matrix as a framework for involving youth with severe communication disabilities in developing health education materials

“…[11][12][13] Moreover, when they are consulted about their opinions, they are usually recruited as research participants on whom research is conducted. 12,14 Rarely are they brought to the centre of the research process where they are valued for their expertise and their involvement in health research. [15][16][17] Three factors may contribute to their exclusion in health research involvement: First, severe disabilities manifest during the developmental years, and may be expressed as permanent, life-long intellectual disability with associated physical impairment (e.g., quadriplegia), sensory impairment (e.g., loss of vision) or other chronic health conditions (e.g., epilepsy).…”

“…This development is of importance for a variety of stakeholders. However, it is of utmost pertinence for youth with severe disabilities, including youth who use augmentative and alternative communication (AAC) to overcome severe communication disabilities 11,12 . Youth with severe communication disabilities are a vulnerable group of the population, whose opinions have generally been excluded from research 11–13 .…”

“…However, it is of utmost pertinence for youth with severe disabilities, including youth who use augmentative and alternative communication (AAC) to overcome severe communication disabilities 11,12 . Youth with severe communication disabilities are a vulnerable group of the population, whose opinions have generally been excluded from research 11–13 . Moreover, when they are consulted about their opinions, they are usually recruited as research participants on whom research is conducted 12,14 .…”

“… 11 , 12 Youth with severe communication disabilities are a vulnerable group of the population, whose opinions have generally been excluded from research. 11 , 12 , 13 Moreover, when they are consulted about their opinions, they are usually recruited as research participants on whom research is conducted. 12 , 14 Rarely are they brought to the centre of the research process where they are valued for their expertise and their involvement in health research.…”

“… 11 , 12 , 13 Moreover, when they are consulted about their opinions, they are usually recruited as research participants on whom research is conducted. 12 , 14 Rarely are they brought to the centre of the research process where they are valued for their expertise and their involvement in health research. 15 , 16 , 17 Three factors may contribute to their exclusion in health research involvement:…”