‘I’m not just a guinea pig’: Academic and community perceptions of participatory autism research

Despite calls for increased community engagement in autism research, the published evidence base suggests that participatory autism research remains rare. This study examined the extent and nature of community engagement in Australian research projects commissioned by the Autism CRC. Data were gathered using an online survey, comprising quantitative scale items and qualitative free-text responses, which was completed by 64 academic partners and 15 community partners. Quantitative findings indicated that autism research stakeholders in Australia are largely supportive of community engagement in research and have had positive experiences of participatory research. These findings were not wholly corroborated by the qualitative findings, however, which suggested that participants lacked understanding of participatory research, and held attitudes that may hinder the conduct of successful participatory research. Systemic issues within research settings were also perceived to impede community engagement in research. Both academic and community partners would benefit from better understanding of participatory research approaches, paired with practical and epistemological shifts at the systemic level, to ensure that future community engagement in autism research is respectful, equitable and beneficial to all stakeholders.