Neurodiversity and Participatory Research in Autism
The idea of neurodiversity is not new but has been gaining more attention recently. The essence of the term ‘neurodiversity’ is that “there is no single way for a brain to be normal,” as explained in a recently-published editorial by Simon Baron-Cohen, head of the Autism Research Centre in Cambridge (see here & here). Looking at autism from a neurodiversity perspective can help promote inclusion and reduce stigma. It means broadening our understanding to see how social systems can change to be more autism friendly, rather than focusing narrowly on the individual. Supermarket ‘quiet hours’ are a nice example of an environmental change that can have a positive impact for people on the autism spectrum.
How has autistic activism contributed? The neurodiversity movement is a social justice movement promoted by autistic autism rights advocates (see den Houting, 2019). Increasing use of words like Neurodiversity, Neurdivergent, Neurotype; hashtags such as #ActuallyAutistic, and a social media profile followed by Âû are indicators of some of the activism linked to the neurodiversity movement. People who are #ActuallyAutistic are finding more channels through which their voices can be heard, which contributes to changes in how we view and understand autism. By sharing their experiences, they give us the opportunity to learn more about what autism is like from the inside.
What is “participatory research” and why is it important? In a recent editorial, Liz Pellicano and her colleagues (2018) explained the importance of ‘participatory research’, which means including autistic individuals in each stage of the research process. Some different methods of participatory research include using advisory boards, co-developing projects, and removing barriers so autistic researchers can access opportunities to contribute. Using these methods makes it more likely that research will reflect the needs of the community, and that interpretations of research data are consistent with how the autism community would view the data. Want to know more? See here.
By Dr Bec Flower and Dr Rachel Jellett, OTARC Postdoctoral Research Fellows