Autism spectrum disorder and the applied collaborative approach: a review of community based participatory research and participatory action research

The quest to understand ASD is monumental, dramatic and paradigmatically shifting. Research advances in ASD challenge the traditional understanding of autism and call for a “reconceptualization” of autism given the revolutionary impact of recent discoveries. Related to this reconceptualization of autism, are the countervailing forces signaling a shift in the research “agenda” where individuals with ASD are part of the research process–and offer an understanding of autism beyond bench science and traditional scholarship. Although many interpretations of autism remain grounded in the biomedical paradigm, individuals with autism, through narrative self-representations and activities are changing the perspective of autism transforming it from “cure to community.” The involvement of individuals with ASD, along with their families, and school and workplace representatives moves research closer to a “communityengaged” endeavor and helps to build a stronger science that is translational and sustainable. This paper examines the role of both community-based participatory research (CBPR) and participatory action research (PAR) in the study of autism issues via the trends analyzed by Scopus in journal publications within an established time-frame of publication dates and specific search analytics. An example of using an ecological model to explore the use of CBPR and PAR in autism research is presented. The goal of this review is to determine trends in publications in these domains and to assist scholars and future researchers to consider identified publications as a part of their plans to use CBPR or PAR designs and ecological models when designing their community engaged research methodology.