Assuming Ability: Synthesis of Methods Capturing First Person Perspectives of Children and Youth with Disabilities

Background: The United Nations Convention for the Rights of the Child states children have the right to express their own views in all matters that affect them. A large majority of research regarding children with autism has not focused on their first person perspectives. The appropriate capture of first person perspectives of youth with disabilities improves research quality and informs practice, while empowering youth participants themselves. Due to the diversity of communication and cognitive abilities in autism, different methods need to be employed to ensure inclusion. However, existing studies provide limited insight into what methods and approaches are best suited to eliciting their voices. Methods already applied with other disability groups may be suitable for youth with autism.

Objectives: Our main objective was to conduct a synthesis of research methodologies previously used to obtain the first person perspective of youth with various disabilities. Another objective was to present the synthesis results to a group of parents who have children with ASD. This stakeholder validation was used to build on the methods identified in literature. Insights from this review will be used to inform a new study entitled ASD Voices, which aims to capture the lived experiences of youth as they transition from adolescents to adulthood.

Methods: Searches for our scoping review were conducted on the PubMed, Academic Search Complete, and Web of Science databases (Aug 2017) for relevant articles within the past 15 years. Empirical articles meeting the inclusion criteria: 1) communicating the lived experience of youth with disabilities, from a first person perspective 2) at least one child 18 years of age or under; 3) no single case studies, were included. Thematic analysis was used to extract themes from our stakeholder validation comprised of a group of four parents.

Results: 284 articles met the inclusion criteria. We identified six distinct primary methods (questionnaires, interviews, group discussion, narratives, diaries and art) expressed through four communication modalities (language, writing, images, and augmentative and alternative communication(AAC)). The most common method of communication was a verbal semi-structured interview. 63 studies included some youth with communication/language impairments. Six themes, including eleven sub-themes, were identified from our stakeholder validation.

Conclusions: Based on our findings, we present a novel methodological framework to capture the perspectives of youth with various communication and cognitive abilities, while highlighting family, youth and expert contributions. Our synthesis is line with previous research, underlining the underrepresentation of youth with cognitive and communication impairments. The authors conclude that existing methods applied with various disability groups can be adapted for a range of youth with ASD. A stakeholder consultation with parents confirmed barriers that may be encountered during this type of participant engagement and also provided concrete recommendations on how to best conduct first person research with youth with autism. Future research should consider increasing transparency with methodological struggles to inform other studies. Using these findings, we will now tailor methodologies and implement them for feedback with stakeholder youth in our next pilot phase of ASD Voices, to test the efficacy of our results.