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Shaping Participatory Autism Research

Joseph Long, Research Manager, Scottish Autism

Between 2015 and 2017 the Economic and Social Research Council funded a UK-wide series of seminars aimed at improving meaningful autistic participation in autism research. The seminars followed the publication of A Future Made Together in 2013, a report that highlighted a need for better involvement of autistic people and their families in setting the priorities of autism research. In response, the Shaping Autism Research seminars brought together autistic people, parents and families, practitioners and researchers in order to discuss how autism research could be made more collaborative and inclusive.

Seminar themes included Adult and Children’s services, autism practice, participatory research, and wellbeing. Scottish Autism’s research team took part in three of the series seminars. We shared our work on practice-focused research at the Edinburgh seminar, which focused on autism practice. At the London seminar on wellbeing the team presented on inclusive survey methods for autistic people. We also took part in final seminar dedicated to pulling together the findings from the series.

The seminars marked an important shift towards collaborative and participatory approaches to research in the field of autism. Outputs from the seminars will be disseminated over the coming months. So far participants have produced a guide to participatory research for early career researchers and are collating examples of best practice to share on the series website. You can read about the series, view video and slides from presentations, and comment on discussions on the Shaping Autism Research website. 

The collaborative approach promoted by the seminars is central to the work of the Participatory Autism Research Collective (PARC), a community seeking to share knowledge and good practice relating to the meaningful involvement of autistic people in research. More information can be found on the Participatory Autism Research website.  

Initially based in London, PARC is now hosting events around the UK and hope to begin activities in Scotland in the very near future, watch the PARC website for more details.