What we created: The Inclusive Autism Research Participation Framework to recruit culturally and ethnically diverse participants.
Inclusive Autism Research Participation Framework Background We have developed an inclusive autism research participation framework based on our insights from the research process, the ELPART, and focus group interviews. Please note that this framework was primarily created with input from parents and carers of autistic young people. The next step is to further develop the framework by co-creating it with culturally and ethnically diverse autistic individuals. This is not a checklist to follow rigidly but a set of considerations to keep in mind. Please utilise the website and other relevant resources to support the points outlined below. The framework aims to encourage inclusive recruitment for your projects. Community focused recruitment is vital and involves working collaboratively with various community groups. It assists researchers in thoughtfully addressing cultural context, empathy, and reflective practice. Some terminology Experts by Experience (EbEs) are individuals who have lived through a particular situation or condition and uses that use their personal experience to inform research, policy, or practice. A collaborative partner is an individual or organisation that actively works together with others on a shared project or goal. In research or community work, this means co designing, co-delivering, and co-evaluating activities or studies.
Collaborative partners, these may include community faith-based organisations, voluntary charity organisations, councils or the NHS.
Community-Centred Recruitment
☐ Partner with collaborative partners, these may include community leaders and faith-based organisations, but recognise that not everyone accesses these or may not engage in these spaces. Therefore, also explore other avenues such as voluntary charity organisations and the NHS.
☐ Involve Experts by Experience (EbEs) from similar cultural backgrounds who also have experience with autism throughout the project.
☐ Agree on a shared philosophy and approach to co-production (e.g., the ELPART). Safe and Culturally Sensitive Spaces
☐ Where possible, use EbEs and/or researchers that reflect the community’s cultural and/or religious background or are empathetic to their experiences around autism.
☐ The research team should understand how autism is spoken about in a community and how this may differ from the academic or other contexts.
☐ Collectively, the research team and individually, researchers should authentically engage in their biases and make space and time to explore these throughout the research project through reflective practice.
☐ When discussing the cultural background of participants and/or EbEs, take an active listening approach with a non-judgmental mindset.
☐ Have clear boundaries on roles, which are clearly articulated in ethics applications and to the research team.
☐ Build in time to support EbEs and research teams to debrief and develop their skills. Flexible and Accessible Communication
☐ If needed, build funding for translation of research materials into community languages.
☐ Use plain language and provide culturally relevant examples of outward-facing communication. ☐ Provide multiple formats/options for communication (written, verbal, visual).
☐ Anticipate differences in language and/or approaches used to describe work with EbEs, research methodologies, and project outcomes when collaborating with multi disciplinary teams from various sectors (e.g., NHS, Voluntary Charity Organisations and Universities). Clarify and agree on differences and common ground (e.g., vision, aims, terminology)
☐ Understand and put in place an approach to support different working styles which are common in neurodiverse teams.
Plan sustainable project outcomes and impact.
☐ Understand which research methods work better for the communities you are working with.
☐ Encourage diverse ways of presenting outcomes (e.g. storytelling via creative methods and/or use of different technologies and spaces).
☐ Create possibilities for ongoing connections within researched community participants, EbEs and/or project team (e.g., community-led events, further projects) and avoid helicopter research.
☐ Show how to link to policy, practice, services, or future research.
☐ Provide updates and opportunities for continued involvement.
☐ Share outcomes in accessible and engaging formats.
Empowerment Through Participation
☐ Allowing space for participants, EbEs and the research team to share and reflect on their learning journey during the research process.
☐ Acknowledge participants and EbEs as co-creators, not just data sources.
☐ Understand that sharing stories is emotional and/or joyous; support may be needed. Be clear who will do this and how. Inclusive
Design and Ethics
☐ Use co-design and participatory action research approaches.
☐ Respect confidentiality, especially in tight-knit communities.
☐ Ensure ethical sensitivity and informed consent.
☐ Ensure payment is appropriate and that universities have a system set up. Expect the unexpected
☐ Participatory approaches are not always linear. Be adaptable, resilient, and flexible within ethical guidelines.
☐ Build in time for the unexpected.
☐ Identify who can help with unexpected challenges and share these challenges so other researchers know they are not alone!
☐ Understand that different organisations have different operational structures, which may not align with your own.
☐ Expect participatory research to be a fantastic opportunity to gain experience, deepen your own reflective practices (we are lifelong learners), and be inspired!
