by Prof Nicola Yuill
It sometimes seems there is an awareness day, week or month for every possible cause – June sees Loneliness Awareness, Men’s Health, National Candy Month and Employer Branding Awareness – so it’s unsurprising that people can become cynical about such things. June is of course also Pride Month, which has become global and celebrates, most notably with parades and the rainbow flag, LGBTQ+ lives. June also sees Autistic Pride Day on 18 June, first celebrated in 2005 by Aspies for Freedom, and now a community event run by autistic people. It’s represented by an attractive rainbow infinity sign.
There are many controversies in autism, from the language used to describe it, to the call for truly participatory research that is co-constructed – research with rather than research on, or ‘nothing about us without us’, representing the broader call for autistic people themselves to create a world in which they thrive and contribute.
One challenge to this is the very broad spectrum covered by the label ‘autism’. A significant proportion of autistic children have a learning disability, and for many, this means that they communicate through non-verbal behaviour to present their take on the world. This is very often not well understood by neurotypical people, and that’s why more participatory research is needed to gain a better understanding of the perspectives and voice of young autistic people. Joint projects at the Universities of Southampton and Sussex are doing just this, using their Autism Community Research Networks and 18 June is a good day to celebrate the progress made so far.
The Digital Stories project, instituted by Prof Sarah Parsons and her team at Southampton University, focuses on representing the experiences and viewpoints of young autistic children with little or no spoken communication, and particularly on trying to understand and smooth the transitions these children face, for example when moving from nursery to primary school, or from college to more independent living. Digital Stories are videos curated with the child or young person and their carers. They are from the child’s point of view and focus especially on their strengths and interests. Recording the videos involves extensive use of wearcams to capture the world from the child’s own visual perspective – where is their attention? what activities or objects are the focus? what movements or vocalisations show potential interest and animation? Prof Parsons explains the idea more fully on the Autism Transitions website.
At the Children & Technology Lab (ChaTLab) at the University of Sussex, Prof Nicola Yuill, Dr Samantha Holt and Devyn Glass are working with Prof Parsons, Dr Hanna Kovshoff and Dr Asha Ward on a new ESRC-funded project, Our Stories, to look at how we can use technology such as wearcams, 360-degree cameras and virtual capture of environments to represent the perspectives of children and young people on the autism spectrum. At Sussex, we’re working with two existing local projects: Time for Autism and Just Right.
Time for Autism is based on the award-winning Time for Dementia project at Brighton & Sussex Medical School, and will help medical students gain a better understanding of the experiences of autistic people and their families, leading to better-informed and empathic provision of healthcare services. Samantha will be supporting some families and students to create their own video stories, helping them to understand each other’s perspectives.
Just Right is an emotion-regulation scheme developed by Sadie Gillett and Karen Milton at Brighton and Hove Council’s school inclusion support service. Devyn Glass is combining this with Digital Stories to help children reflect on and manage their emotions and to self-regulate their moods so that they can feel ‘just right’ and ready to learn. Devyn is co-creating the stories with school teams and young autistic learners to represent their transitions between different mood states. The Southampton team are working in a range of schools and settings, co-creating stories for transition and also working with a tech company, Autek, to make online tours of settings for virtual visits.
This kind of approach is finding new ways for autistic learners with limited or no verbal communication to have their say, and to have their perspectives represented, maybe leading to an even more inclusive Autistic Pride in the future.
Nicola Yuill is professor of Developmental Psychology in the School of Psychology at Sussex. She is part of the Developmental and Clinical Psychology research group, the director of the Children and Technology Lab and one of the founders of ACoRNS.