How can we innovate and co-create in autism research?
Reflections of a visit to the Changing the Face of Autism Research Together exhibition at the Science Gallery in London
At the entrance I was given the choice of two stickers, green (happy to be approached for chat) or red (leave me alone or do not disturb). I took both and kept the red sticker hidden under my coat in case I needed it. I was shown a small dark corner with dim light and comfy looking floor cushions and invited to go there whenever I needed. What a great start!
Then I heard and watched stories in parallel. Audio consisted of stories and opinions of researchers, autistic people and family members of autistic people. Visual stories consisted of timed recreations of steps taken to create digital portraits of those narrating their stories. A delight for the senses and a satisfaction for the mind to be able to identify with real stories. There were also banners but I enjoyed more the interactive display.
This is what I experienced at the preview of the “Changing the Face of Autism Research Together”, an initiative that saw Kinga Bercsenyi, Jon Adams, Mario Ruiz Sorube and Monica Arevalo (and many others that I am sure I do not know) curate information and art during more than 6 months, into a one day only event to coincide with the 2nd of April The World Autism Awareness Day Observance. But this would not have been possible without researchers, artists and autistic people and their allies.
They are showing us that it is possible to overcome the double empathy problem and achieve beautiful work together. We have so much to learn from them. Thus, one of the key messages that this initiative has echoed (CRAE, Fletcher-Watson, PARC ) is the value of participatory research and shaping research to be inclusive.
However, I think we can do better and be bigger. We need to do more. Lower and middle income countries need help. We need to invest research funding broadly, so I hope that one day the Global Disability Innovation Hub has an awesome list of projects and initiatives helping to make the world more accepting of neurodiversity.
World Autism Awareness Day will be in the calendar for as long as it carries stigma, discrimination and lack of support and it is very important to reflect on this. So I invite you (researcher, autistic person, family and friend of autistic person, person that has no idea what autism is and knows no autistic person) to have a look at this U.N. website and will also encourage you to take a free online course on understanding autism or read this book.
Finally, be gentle with researchers because now more than ever, there are more autistic researchers out there and we are 100% committed to help and learn. Please do not stigmatize researchers we want to co-lead the change and co-create for better outcomes for all.
If you were not able to go to the gallery, the content of the gallery is now in this website.