From ivory tower to inclusion: Stakeholders’ experiences of community engagement in Australian autism research

Abstract

Autistic people, and other community stakeholders, are gaining increasing recognition as valuable contributors to autism research, resulting in a growing corpus of participatory autism research. Yet, we know little about the ways in which stakeholders practice and experience community engagement in autism research. In this study, we interviewed 20 stakeholders (academics, autistic people, family members/careers, research students, and service providers) regarding their experiences of community engagement in Australian autism research. Through reflexive thematic analysis of interview data, we generated four themes. First, our participants perceived academia as an “ivory tower,” disconnected from community members’ lives and priorities. Second, our participants identified that different stakeholders tended to hold different roles within their research projects: academics typically retained power and control, while community members’ roles tended toward tokenism. Third, our participants spoke of the need to “bridge the gap” between academia and the community, highlighting communication, accessibility, and planning as key to conducting effective participatory research. Lastly, participants emphasized the changing nature of autism research, describing participatory research as “the way of the future.” Our findings reflect both the progress achieved to date, and the challenges that lie ahead, as the field advances toward genuine co-production of autism research.

Exploring factors for meaningful patient involvement in infectious disease clinical studies: A qualitative pilot study among key stakeholders

“…The sub-theme “Gaining insight into the ivory tower” revealed a prevailing tendency to rely on the assumptions of key opinion leaders instead of the perspectives and experiences of patients. This was also observed in literature (6, 15, 17, 28). Many stakeholders, in particular patient representatives and clinical researchers, reflected on their respective roles in clinical research.…”

‘It's really important to be collaborating’: Experiences of participatory research for Chinese and Vietnamese parents of autistic children

“…As such, we have little knowledge on the actual process of conducting participatory research, even though respecting and evaluating the impact of co-produced research is a key aspect of the participatory research process (Hickey et al, 2018). Those few existing studies that have evaluated the participatory process after the research was concluded (den Houting et al, 2021, 2022; Jose et al, 2020) have found that, while stakeholders were broadly positive about their experiences, they remained unclear about their roles/responsibilities and found power imbalances between researchers and community members challenging.…”

The INSAR Community Collaborator Request: Using community–academic partnerships to enhance outcomes of participatory autism research

“…Genuinely inclusive, participatory research tends to be more socially just, innovative, accessible, and reflective of participants' lived experiences than research undertaken without a similar degree of power‐sharing (McDonald, 2017). Although inclusive, coproduced and participatory methodologies are typically employed in only a minority of autism research studies, there is a growing demand from the autistic community to be involved in the research process (den Houting et al, 2021, 2022; Dwyer et al, 2021; Pukki et al, 2022; Stark, 2022), resulting in a shift of the direction of much research to focus on the priorities of autistic people and their allies (Fletcher‐Watson et al, 2019; Keating, 2021; Poulsen et al, 2022); family members in particular can be important allies to include in many participatory projects (Fletcher‐Watson et al, 2019). Results are similarly positive when participatory studies of autism are evaluated by participants (Pellicano et al, 2022).…”

“…To this end, the research community increasingly seeks to embrace this participatory approach but has outlined barriers enabling participatory research, including communication disparities between researchers and collaborators, systems‐level factors that disincentivize participatory methods, and limited avenues that enable involvement of the community within academic research (den Houting et al, 2021, 2022; Hollin & Pearce, 2019; Milton et al, 2019; Nicolaidis et al, 2019; Pellicano et al, 2014; Pickard et al, 2022). Considerable time commitment and increased funding requirements represent additional oft‐cited barriers that prevent researchers from adopting participatory research practices (den Houting et al, 2021; Drahota et al, 2016).…”

“…Considerable time commitment and increased funding requirements represent additional oft‐cited barriers that prevent researchers from adopting participatory research practices (den Houting et al, 2021; Drahota et al, 2016). Notably, research suggests that the absence of inclusive practices in autism research to date is at least partially due to perceived systemic, attitudinal, and practical barriers rather than a lack of willingness from academic or community partners to engage in participatory research (den Houting et al, 2021, 2022; Pickard et al, 2022). To produce autism research that is both participatory and emancipatory we must thus establish structures and processes to facilitate equitable and accessible coproduction, to interrogate the value of different inclusive practices, and to evaluate the efficacy of authentic autistic as well as family member involvement in research (Chown et al, 2017; Pukki et al, 2022).…”