The mantra, “Nothing about us without us” has often been invoked to demand the inclusion of people with disabilities in research and policy-making. Such an approach to Autism research is best achieved through Participatory Action Research (PAR), involving quantitative (e.g. surveys asking for numerical ratings of statements), qualitative (e.g. interviews), and/or mixed methods (e.g. a combination of qualitative and quantitative approaches). However, PAR is often limited to engaging participants during project design and data collection.
At The Autism Academy UK, we believe PAR can and should go further, and ensure the autistic community are included in all aspects of research - from conceptualization to dissemination. Only by doing so can we move toward a research process that is empowering and addresses issues of real-world value.