Community Engagement

Community engagement is essential to conducting meaningful research. It helps ensure that the voices and perspectives of the autism community are heard, strengthens the relevance and quality of our research, and helps us build and maintain trust.

We are committed to meaningful engagement with the autism community, guided by the following principles:

Transparency: We recognise that autistic people, their families and the wider public have a right to understand what research is being conducted, why, and what its findings are. We will provide a summary of every research project on our websites and share relevant information with our advisory panels and research participants.

Participatory research: We recognise autistic people as key stakeholders in autism research and believe they should have meaningful opportunities to contribute to the design, methodology and relevance of research, alongside their families and advocates where appropriate.

Participatory research includes co-design, consultation and other forms of engagement, ranging from surveys and focus groups to members of the autism community becoming part of the research team. Whatever the approach, engagement should be respectful, open to different perspectives, and provide the community with a meaningful opportunity to influence what research is conducted and how it is undertaken.

Valuing expertise by experience: We recognise that autistic people and other members of the autism community bring valuable expertise by experience, particularly when research relates directly to their everyday lives. This is especially relevant to research on topics such as vulnerability, employment, education and support. We consider expertise by experience to be equal in value to scientific and clinical expertise.

Alignment with our values: All community engagement will be consistent with our values. Our values statement includes a clear position opposing eugenics, prenatal screening and the prevention of autism. We will ensure that members of the autism community are aware of these values when invited to participate in engagement activities.