In episode 8 of The Autism Podcast, Chris and Kiran speak with Dr Georgia Pavlopoulou, an academic working with sleep experts and the autistic community in order to understand sleeping issues among people, autistic sibling well-being, mental health, participatory research approaches and more. Georgia works at University College London in particular at the LiLAS Laboratory which is a lifespan learning and sleep laboratory run jointly by UCL and the Institute of Education.
The interview focuses upon the challenges that poor sleep pose to autistic people and their families, including the nature of these challenges, their consequences, what increases the risk of poor sleep, and advice on how to approach these issues.
0 - 5:28 - Introduction
5:29 - 11:40 - The importance of theory and participatory approaches when designing research studies, and how this helped Georgia initially identify some of the issues related to sleep
11:41 - 20:25 - What is 'good' sleep, 'deep sleep', the autistic sleep profile and differences between typically developing people, and improving 'sleep hygiene' among autistic people specifically
20:26 - 25:17 - Risk factors of sleep problems including poor mental health, social environments and lifestyle. What are the causal relationships - does poor sleep cause poor mental health or does poor mental health cause poor sleep? Also the consequences of poor sleep including unemployment
25:18 - 28:09 - The links between sensory issues, anxiety, daytime routines and sleeping profiles
28:10 - one size does not fit all, the importance of understanding the individual, using screens/social media before sleep, feelings of self-blame
33:10 - 42:20 - Professionals stigmatising autistic people and perceiving sleeping issues among autistic people as a consequence of behavioural deficit and being rule-breakers. Sleep is a lifespan issue and therefore we need more research on sleep among autistic people across different age groups. This lack of research is in part due to not listening and valuing the autistic voice until now (reinforcing the importance of participatory approaches), as well as the 'deficit narrative' and autism stigma.
42:21 - 49.34 - The impact of poor sleep on families and parents/carers, blame towards parents/carers which increases the risk of self-stigma and self blame among parents/carers, removing the blame
49:35 - 51:27 - There are many more questions still to explore: do autistic people have different circadian rhythms? how does epilepsy, gender issues, co-existing conditions such as adhd, side effects of medications, other medical problems (such as constipation) all play a role? We need more research! Without the evidence, people are guessing their way forwards which may not work and may result in further anxiety and self-blame
51:28 - 55:08 - General, reasonable advice to parents/carers who are struggling with sleeping issues in the families.
55:09 - 57:08 - General, reasonable advice to autistic people who are struggling with sleeping issues,
57:09 - 58:27, 1:02:56 - 1:03:44 - How to contact Georgia including how to get involved in her research
58:28 - 1:02:55 - Does sleep naturally improve over time without intervention/additional support? Brief discussion about melatonin
1:03:44 - 1:08:00 - Some final advice from observations during Georgia's observations including not to fear embracing unusual but safe and reasonable solutions, trust your child and be guided by them as to what to safely try
Georgia's twitter: https://twitter.com/jopavlopoulou
LiLAS lab twitter: https://twitter.com/LILAS_Lab
Georgia's profile page: www.lilaslab.com/georgia-pavlopoulou
For Georgia's latest research papers go to: https://www.ncbi.nlm.nih.gov/pubmed/30802802 and https://network.autism.org.uk/good-practice/evidence-base/autistic-adults-and-sleep-problems
Upcoming sleep event for parents to hear more about the results of our latest work: https://www.eventbrite.co.uk/e/ucl-open-sleep-day-tickets-57617630885
Sample of sleep papers from LiLAS Lab team; The Role of Environmental Factors on Sleep Patterns and School Performance in Adolescents: https://www.researchgate.net/publication/285573305_The_Role_of_Environmental_Factors_on_Sleep_Patterns_and_School_Performance_in_Adolescents