Changing the face of autism research
An initiative to bring autistic people together with scientists to share ideas and influence the research agenda culminated in an exhibition of thought-provoking portraits at the Science Gallery London.
Changing the Face of Autism Research Together was led by Dr Kinga Bercsenyi, Champion for Translational Neuroscience at the National Institute for Health Research (NIHR) Maudsley Biomedical Research Centre (BRC). Its aim was to establish a dialogue between the autistic community and researchers, so that future studies are influenced by the views, priorities and input of autistic people. The project was funded by the Wellcome Trust and the NIHR Maudsley BRC.
The initiative saw researchers and autistic people work with artist Mario Ruiz Sorube to create a unique self-portrait. Each person added images, colour and text to a digital portrait to express their personality and illustrate the things most important to them. This creative process was captured in a two-minute animation for each participant. In addition, autistic podcaster Jon Adams recorded conversations with those taking part throughout the process.
The portraits and a selection of the animations and podcasts were showcased during a series of engagement events hosted at the Science Gallery London at London Bridge, and were on display for the public to view for one day only on World Autism Awareness Day (Tuesday 2 April).
Commenting on the project, Dr Kinga Bercsenyi, who is also Sir Henry Wellcome Fellow at the Centre for Developmental Neurobiology at King’s College London, said:
I am a firm believer that the only way modern science can serve society is if it involves and communicates with communities. I was compelled to make this project happen to bring together the autistic community and researchers like myself, to find ways for us all to influence autism research together.
By encouraging people to be creative, honest and open, and to have fun expressing themselves, we’ve been able to dismantle some of the barriers we unwittingly create every day. Some really valuable conversations have come out of it all, such as: what does ‘participatory research’ mean and what we could do to make it work better? The portraits, podcasts and discussions show that we’re really all just individuals trying to make sense of ourselves and the world.
I hope the portraits and podcasts challenge people’s preconceptions about autism and help us all to appreciate and embrace neurodiversity. In particular, I hope that more researchers like myself will feel inspired to reach out to the autistic community, ask their views, and make sure their priorities shape the future of research on autism.
The portraits, time-lapse animations, and podcasts are now available online on the NIHR Maudsley BRC website.
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