Recruiting culturally and ethnically diverse groups in autism research

Why is it important to recruit culturally and ethnically diverse groups in autism research

Written By Rohan Dasgupta

(Research Assistant)

Background to the project.

Even though PR aims to address underrepresentation in research, some communities within autism research are still underrepresented (e.g., ethnic minority autistic people and/or their families, Maye et al., 2022). We co-developed a framework to help researchers recruit cultural and ethnically diverse EbE groups and participants into PR in autism. We ran four focus groups with autistic people and families of autistic people from the Black African and Caribbean (Christian) and South Asian (Sikh, Hindu and Muslim). These groups are underepresented in autism research.

What is Participatory research (PR)?

PR is a methodological framework emphasising collaborative engagement between researchers and the populations being studied, and has been widely proposed as a mechanism to bridge this divide. However, autistic voices remain significantly underrepresented in PR compared to other communities, such as those in the fields of learning disability and broader healthcare research (Den Houting et al., 2021; Pellicano et al., 2022).

The underrepresentation of autistic individuals in PR is not incidental, but rooted in structural, cultural, and epistemic barriers. Den Houting et al. (2021) and Pellicano et al. (2022) both identify that although PR is gaining momentum as a valuable research method, its implementation in autism research is impeded by limitations in researcher training, institutional norms and prevailing attitudes towards autistic collaborators. These systemic barriers are compounded by the lack of formal training for early-career researchers (ECRs), many of whom express a desire for more comprehensive education in participatory methods specific to autism contexts (Houting et al., 2020; Pickard et al., 2021). This gap in training perpetuates the exclusion of autistic stakeholders from shaping research that directly affects them.

Qualitative research by Hollin and Pearce (2019) identified some challenges of implementing participatory approaches in AR. Through interviews with autism researchers, three key tensions were identified: (1) difficulties in generalising across diverse autistic experiences, (2) socio-communicative mismatches between researchers and autistic communities, and (3) a recognition that certain autistic traits, such as detail orientation and commitment to ethical integrity, can positively contribute to research quality, especially in areas such as research ethics and dissemination practices (Hollin & Pearce, 2019; Milton, 2012; Pellicano & Stears, 2011). These findings underscore the dual nature of the challenges and opportunities in incorporating autistic voices more meaningfully into the research process.

To move beyond tokenistic involvement, researchers must adopt inclusive frameworks that view autistic individuals not merely as subjects of inquiry but as co-creators and stakeholders in knowledge production. Research stresses the necessity of structural and cultural transformation in AR to enable genuine participatory engagement (Raymaker & Nicolaidis, 2013). Fletcher-Watson et al. (2018) echo this perspective, advocating for a reconceptualisation of autistic participation within research, where power is shared and outcomes are co-produced. However, achieving such transformation is not straightforward. It requires clear guidance, appropriate tools, and targeted training to enable researchers to embed PR principles within their practices effectively (Jivraj et al., 2021).

Critically, while PR seeks to elevate the voices of autistic individuals, equity within PR itself remains a significant concern. Evidence suggests that ethnic minorities, people from low socio-economic status (SES) backgrounds, autistic individuals with higher support needs, those with co-occurring learning disabilities, and LGBTQIA+ individuals are disproportionately absent from participatory research groups (Fletcher-Watson et al., 2021; Roche et al., 2020). This underrepresentation may limit the appropriateness of research findings to these communities, but also reproduces systemic biases within the field. Moreover, NHS trusts such as Coventry and Warwickshire have also reported a lack of diversity within their own “Experts by Experience” (EbE) groups, highlighting the need for more representative stakeholder engagement at all levels.

The recruitment of diverse EbE group members is hindered by the volunteer-based nature of participation and the absence of a national strategy for stakeholder engagement in research (Bombard et al., 2018). This often results in a self-selection bias, where those with the time, resources, and confidence to engage with researchers disproportionately shape the research agenda. Concerns about the representativeness of these voices have been echoed by autism researchers, who fear the dominance of a narrow demographic within participatory groups (Hollin & Pearce, 2019). To counteract this, NHS England (2023) recommends that research teams strive for diversity “consistent with the broader population” and make proactive efforts to reach out to underrepresented groups (McNally et al., 2015, cited in NHS England, 2023, p. 23).

The Present Study

Responding to the above concerns, a key aim of the current project is to develop inclusive guidance for recruiting diverse EbE stakeholders and participants, with a specific focus on individuals from ethnic minority backgrounds. This will be achieved by partnering with Voluntary, Community, Social enterprise and Faith (VCSEF) organisations to facilitate recruitment and engagement. Notably, the project includes the involvement of lead EbEs from culturally and ethnically diverse communities who are underrepresented in autism diagnosis and accessing services in the Coventry and Warwickshire area. We targeted South Asian groups, namely, split on faith (e.g., Hindu, Sikh, Muslim), and Black African Caribbean individuals (Christian). Their insights will inform the design of participatory focus group discussions aimed at identifying barriers to engagement and co-creating solutions.

The participatory methodology of the study is itself an embodiment of PR values. Co-designed focus group questions will explore key issues, including:

(a) How to improve PR engagement among underrepresented autistic groups,

(b) How do we talk about autism in culturally and ethnically diverse communities?

To ensure accessibility, data collection methods will include both group and individual meetings, as well as asynchronous email correspondence. This inclusive approach acknowledges the diversity of communication needs within the autistic community and is designed to foster comfort, autonomy, and authentic participation. The findings from these activities informed the development of new guidance and training materials, but also fed directly into dissemination activities, including a webinar and a project website. The outputs will serve as practical resources for researchers looking to embed PR into their autism-related work and will be reviewed by both academic and community partners.