Autistic people urge scientists to work alongside them

An initiative to bring autistic people together with scientists to share ideas and influence the research agenda has culminated in an exhibition of thought-provoking portraits at Science Gallery London.  

Changing the Face of Autism Research Together is led by Dr Kinga Bercsenyi, Sir Henry Wellcome Fellow at the Centre for Developmental Neurobiology at King’s College London. Its aim is 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 is funded by the Wellcome Trust and the National Institute for Health Research (NIHR) Maudsley Biomedical Research Centre.

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, culminating in a public viewing on World Autism Awareness Day (Tuesday 2 April). More than 50 researchers and autistic people were invited to come together to share perspectives and learn from each other. One session encouraged 30 schoolchildren to explore what is meant by the term ‘neurodiversity’, and invited them to redesign their classroom to make it more welcoming for all.  

The portraits and podcasts were the foundation for a round table discussion involving all participants on the topic of how science can best serve the community, and how people can work together to create an open and inclusive environment. A podcast of this discussion was played at a special event in the exhibition space, where attendees from the autistic and scientific communities were encouraged to think about the future of autism research in the UK.

Commenting on the project, Dr Kinga Bercsenyi, who is also Champion for Translational Neuroscience at the NIHR Maudsley Biomedical Research Centre, 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.”

Jon Adams, podcaster for the project, said: “I really believe it’s important to involve autistic people at every level of autism research - just like in the arts, we should be involved, not only through participating, but also informing the direction and ideas for autism research. I’d like to see research initiated by autistic people’s needs rather than what is assumed we may need. Researchers need to meet and sit with autistic people, to see us as fellow human beings, not people with a condition or somehow broken by being different.

“I hope people will listen to these conversations and look at the portraits and be inspired to bring autistic people and researchers together in a way that is mutually beneficial. We have a lot to learn from each other and research has to reflect the wishes of people to live fulfilled and healthy lives, not impose treatments, cures or preventions upon us. Involvement in autism research ensures equity, preventing research from excluding our views and needs.”

Tags: Public engagement - Patient and Carer Involvement and Engagement - Events -

By NIHR Maudsley BRC at 2 Apr 2019, 15:33 PM

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