‘Our Stories...’: Co-Constructing Digital Storytelling Methodologies for Supporting the Transitions of Autistic Children - Study Protocol

Abstract

The voices of autistic children and their families are routinely underestimated and overlooked in research and practice. Research is challenged methodologically in accessing the views of autistic people who, by definition, are characterised by social and communication difficulties. Consequently, many voices remain unheard and experiences undocumented. This has important implications for the validity of research that is interested in improving the life experiences of marginalised groups since the representation of those experiences is partial and dominated by research perspectives that prioritise particular kinds of evidence. This situation matters because there remains a substantial gap between research and practice such that the longer-term outcomes for autistic people across social, educational and economic indices remain poor. We argue that research can only make an impact on practice if there is a genuine commitment to gathering and understanding these different sources of evidence in ways that connect research and practice from the start. This protocol describes a methodological project funded by the Economic and Social Research Council in the UK. The ‘Our Stories’ project applies and extends a participatory Digital Stories methodology to explore the research challenge of gathering a range of views from autistic children, families, and practice in authentic ways and at points of transition. Digital Stories is an accessible and inclusive methodology that supports the sharing of views and experiences in visual, video form. We describe the rationale for, and design, of the project across four pilot studies in different contexts as well as our approach to analysis and ethics. While our project focuses on autism, the knowledge we gain is applicable to research and practice much more widely and to any voices or groups who are marginalised from the traditional ways of doing research and to any contexts of practice.