A good night’s sleep: Learning about sleep from autistic adolescents’ personal accounts
Sleep is a strong predictor of quality of life. Most autistic people struggle to fall asleep or to stay asleep during the night. Despite the importance of sleep on many domains, we don’t know what helps autistic people to sleep from first-hand accounts.
54 autistic adolescents collaborated with me in a novel adapted photo elicitation methodology, rooted in a Lifeworld framework. The adolescents were invited to collect and analyse their own data as well as discussing and presenting results in knowledge exchange events along with family and community members. We found a number of self-reported practices related to a good night's sleep. These included personalised sensory and relaxation tools during bedtime, physical activities during day time, spending time in predictable and fun ways with family members before bedtime, following personalised schedules at home and school which allow autistic adolescents to engage with highly preferred and focused interest activities.
This study provides evidence that healthcare providers should go beyond providing a standardised sleep hygiene handout and instead collaborate with autistic adolescents to co-create a personalised sleep set of habits. Emphasis is also placed on understanding the impact of day time factors as experienced by autistic adolescents on sleep.
The study has been funded by The John and Lorna Wing Foundation.
Georgia has completed her PhD in Developmental Psychology and Mental Health and is currently leading PG and Master Modules across UCL and Anna Freud National Centre of Excellence for Children and their Families. She collaborates with the CYP-IAPT team at Kings College London, Institute of Psychiatry, Psychology and Neuroscience delivering "Supervision for Supervisors" training in Autism/Learning Disabilities.
Georgia has been invited as a guest lecturer /external speaker to several workshops, conferences and seminars around Europe and in the US. She has more than 18 years of working experience in educational and health settings.
Georgia's training and research aims to promote a participatory framework working with rather than on autistic people across their lifespan and their families. Her research is focusing on family mental health, siblings' experiences and needs, ethics of care, sleep, anxiety, relationships and loneliness.