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A UCL researcher has engaged with autistic young people, their families, and clinicians to develop better strategies to tackle a major challenge: how to sleep well.
Using participatory research to improve support for autistic young people
The project involved working collaboratively with 54 autistic adolescents to co-produce a study using a novel photo elicitation methodology, showing images in interviews to stimulate discussion and help capture participants' thoughts and feelings. The participants reflected on their experiences with healthcare practitioners, who often try to impose mainstream sleep hygiene rules (like no screen use before bed). These can be experienced as one more pressure to comply with mainstream rules written by, and for, non-autistic people. Instead, the young people wanted to have the chance to co-create a personalised set of sleep habits. These may include daytime activities that increase predictability, flexibility to achieve sensory comfort, and activities, relationships and objects that promote a sense of worth.
Creative synergies and knowledge exchange led by autistic young people
To increase the impact of these findings, Dr Pavlopoulou brought together NHS clinical staff, autistic pupils, and school staff to understand their responses to the research, and to create resources to share the findings more widely. This resulted in a range of evidence-based support materials on the topic of sleep, including a YouTube video, a printed leaflet, novel self-reporting forms on sleep habits and a Sleep!!! music video created by autistic young people for TikTok and Instagram.
The research has directly informed several guidance documents for parents and clinicians through Sleep Charity conferences, the National Autism Society’s professional networks’ blog and as a core part of the NHS’s National Autism Trainer Programme delivered to 4,800 professionals in NHS mental health settings, youth justice settings and special residential schools and colleges.
“Be kind to your senses”
The material has successfully sparked conversation between autistic young people and their support networks about how to plan and maintain healthy sleeping patterns. Dr Virginia Lumsden, Consultant Clinical Psychologist in Kent and Medway Mental Health Support Teams, worked with Dr Pavlopoulou on the project:
Dr Pavlopoulou’s paper, and the voices of the young people in the original research, provided us with the evidence to prioritise an individualised approach to supporting autistic young people to get a better night’s sleep. It affirms the value of learning from neurodivergent young people and their families to ensure a personalised approach to supporting them in all areas of their lives.”
About the academic
Dr Georgia Pavlopoulou is an Associate Professor at UCL, a developmental and educational scientist and a registered integrative psychotherapist using a collaborative, integrative perspective, deeply rooted in humanistic and person-centred values. She is committed to creative and participatory research to improve access and involvement of neurodivergent people to educational, healthcare, and mental health services. She has experience working with autistic people and their families and has felt the benefits of involving them with clinical and educational decision-making. [2021–22 cohort]
Images
Patrick Daxenbichler via Dreamstime. Gabrielle Fadullon for UCL IOE.