A Week in the Life of Community Programs: Describing Barriers Experienced by Three Transition Age Youth with Autism Spectrum Disorder and their Caregivers

Abstract

Various barriers for participating in physical activity for people with Autism Spectrum Disorder (ASD) have been identified; specifically, the insufficient availability of programs and knowledgeable personnel to run them (Taub & Greer, 2000; WHO, 2015). Ironically, there are a magnitude of proven benefits specific to ASD that accrue from being physically active, including a decrease in stereotypic behaviours (hand flapping, object spinning) and sleep deprivation (Taud & Greer, 2002; Todd & Reid, 2006; Gaskin, Anderson & Morris, 2009; Connolly, 2008). Previous research has focused on investigating barriers for individuals experiencing disability in relation to environment, economic and political components (McDermott & Turk, 2011). However, minimal research involves the perspective of the individuals experiencing ASD who do not use verbal communication and require greater supports. The purpose of this phenomenological study was twofold. Firstly, to unearth barriers experienced by three transition aged youth with Autism who require 1:1 support or greater and their caregivers in a ‘typical week’. Secondly, to examine whether Priestley’s (1997) 6 principles of emancipatory research could be applied to this research process. In the process of engaging with the three youth participants and their caregivers in this study, I completed multiple observations of the youth participants in community programs and activities, then conducted semi-structured interviews with their caregivers, and non-traditional, alternative communication interviews with the youth participants. Analysis revealed that implementing Priestley’s 6 principles of emancipatory research could not be applied to this research process because of controversies with the ethics board. As well, barriers to participation in community programs included lack of staff training and inability to adapt to individual needs. The findings of this study imply a greater need for rapport based and embedded research with individuals experiencing complex ASD. Similarly, Research Ethics Boards need a greater understanding of individuals who do not use words to communicate to enable researchers to pursue authentic emancipatory research with complex and typically, under-represented participants.