Article written by Samuel Hurley, Social Responsibility and Public Engagement Intern

Historically, when studying disorders such as autism, psychosis or dementia, those with the disorders were treated as study subjects rather than collaborators. However, people with disorders are increasingly becoming ‘experts by experience’, playing key roles in the research process themselves. These academic/patient co-productions are increasingly being shown to provide all kinds of benefits to psychological research and researchers from The University of Manchester are leading the way forward.

Experts by experience can be academics themselves, providing vital insights into gaps in the literature. Karen Leneh Buckle, an autistic person and student at the University, chose to investigate autistic inertia, an overlooked aspect of living with autism. Karen’s 2021 paper in Frontiers in Psychology was the first to describe this difficulty with stopping, starting and changing tasks. The team concluded ‘Inertia had pervasive effects on participants’ day-to-day activities and wellbeing. This overdue research opens the door to many areas of further investigation to better understand autistic inertia and effective support strategies.

Dr Ellen Poliakoff and Dr Emma Gowen of FBMH’s neuroscience and experimental psychology division are supervising Karen’s research. With autistic collaborator Peter Baimbridge, they have created practical guidelines for autism researchers to consider, increasing involvement, collaboration and trust between academics and the autism community who may have previously felt they were being experimented ‘on’ rather than with.

Despite clear advantages, one obstacle with co-productive research is that they take longer to run. Emma calls for funders and research institutions to value co-production research and factor in the extra time and money it takes to produce a study, otherwise researchers may be discouraged from this type of collaboration in order to meet pressures to publish high numbers of articles.

To find out more about PPIE: watch our short film, sign up to the monthly Public Engagement Digest, visit the PPIE blog, follow @FBMH_SR, visit our PPIE Toolkit or contact srbmh@manchester.ac.uk.  

Related