Examining the Engagement of Community Partners in Autism Research within the Autism CRC

Background: Participatory approaches to research are gaining increased popularity as efficacious methods for conducting health research and research with minority populations. Recently, there has been growing recognition within the research community of the need to engage with the autistic community and other stakeholders not only as research participants, but as active and equal partners in the research process. In Australia, the Cooperative Research Centre for Living with Autism (Autism CRC) has been at the forefront of this movement with their commitment to investing in inclusive and participatory autism research, and have implemented strategies to encourage research co-production. However, to date it has been unclear whether the Autism CRC’s goal of inclusive research practice has translated into genuine engagement with community partners throughout the process of Autism CRC funded research projects.

Objectives: This study aimed to examine the nature and extent of community partner engagement within research projects funded by the Autism CRC, by gathering perspectives from both academic and community partners involved in Autism CRC research. We investigated questions such as: are Autism CRC researchers engaging with community partners? If so, how often, and with which community stakeholders? How effective do they perceive this engagement to be? In addition, we aimed to examine whether community and academic partners hold similar or differing perspectives of the nature and extent of community engagement within Autism CRC research.

Methods: Autism CRC Project Leaders (n = 31) were asked to nominate all academic partners (research professionals and research students) and community partners (autistic people, family members, service providers etc.) involved in their Autism CRC-invested research projects. All nominated partners were then invited, via email, to participate in an anonymous online survey. The online survey was designed to measure key elements of participatory research, and was adapted from a measure designed by Oetzel et al. (2018).

Results: Nineteen Autism CRC Project Leaders nominated a total of 163 potential participants, including an estimated 35 community partners and 128 academic partners. Data collection is ongoing, with a total of 21 survey responses (17 academic partners and 4 community partners) gathered to date. Preliminary data indicate that Autism CRC research partners are generally supportive of community engagement in autism research (M = 4.05, SD = 0.67, where 1 = preference for no community engagement and 5 = preference for extensive community engagement). Community engagement was perceived by participants as generating outputs that were more relevant to the autistic community, however efforts to engage with community partners were felt to be hampered by short timeframes, limited resources, and lack of cohesion within the autism community.

Conclusions: Based on preliminary findings, it appears that Autism CRC community and academic partners endorse the organisation’s commitment to produce inclusive autism research. Despite the Autism CRC’s efforts to implement participatory research approaches, however, there may well be substantial barriers limiting genuine and meaningful community engagement.