Dr Georgia Pavlopoulou is an autism researcher and a teaching lecturer at UCL, IOE Department of Psychology and Human Development. Here Dr Pavlopoulou discusses research that explores young autistic people’s own sleep experiences.

Research has shown that most autistic people experience sleep problems throughout their life (Richdale and Schreck, 2009). The most common sleep problems include (Malow et al., 2006, Miano et al., 2007, Giannotti et al., 2008)

• sleep onset delay
• frequent night-time waking
• shorter total sleep time. 

Sleep is a strong predictor of quality of life (Deserno et al., 2019) and is related to cognitive and behavioural functioning. Despite the importance of sleep on many domains, it is still unclear from first-hand accounts what helps autistic people to sleep.

The purpose of this study was to explore, together with autistic adolescents, their sleep-related practices during the day and before bedtime that contributed to a good night’s sleep.

Paediatric sleep complaints are often problem-driven and developmentally focused, as they based on parental reports of their children’s sleep. However this study focussed on autistic adolescents own experiences of sleep and what constitutes a ’good night’ of sleep.

The first line of treatment for many autistic young people who struggle to fall asleep, or to stay asleep during the night, is introducing sleep hygiene rules. These are a set of sleep-related and lifestyle habits thought to aide better sleep, for example not viewing screens before bed and making sure a bedroom is dark. For some autistic people this might feel like one more pressure to comply with mainstream rules written by, and for, non-autistic people. 

The study

I wanted to explore participants’ sleep experiences and what they perceive as helpful. This study adopts an experience sensitive approach that could, and should, complement other much-needed biomedical approaches to sleep research and practice. 

I asked 54 autistic adolescents, aged 12 to 17 years, to generate their own photos and use objects and words to introduce subjects and ideas that are meaningful and important to them, around the following themes: 

• the place they sleep and its surroundings
• activities or objects that are related to their sleep habits
• activities, objects or people that show situations that are related to daytime and night-time activities that help them to fall or stay asleep
• objects, people or drawings that show or are related to the bedtime thoughts and activities that help them to fall asleep 
• objects, drawings or actions that show how they feel or think about their sleep.

This qualitative approach meant the autistic adolescents were active participants across key stages of data collection and data analysis. This research shares interesting ideas for improving sleep routines that come directly from autistic teenagers. 

What did the research tell us 

The results identified four key factors that may play a role in the sleep experiences of autistic young people:

• focused interests
• physical activity
• sensory autonomy during bedtime
• having more control and choice in their daily lives.

Focused interests

Spending time on their focussed hobbies and interests before bedtime helps distract the teenagers from the stresses of the outside world, even in cases when traditional sleep hygiene rules were not followed (e.g., avoiding screen time or games before bed). Such activities feel familiar, comforting and predictable.

“It [drumming] helps me to release all energy, I am only allowed to have a short session before bed, like 15 min or so (…) It feels relaxing after”

“I am all smiley and happy, like some time ago when I constructed my own castle and a house for my dog in Minecraft (…) it is not real life, and that is the best thing about it”

Physical activity

Opportunities to exercise in their own time, doing activities they choose, was helpful and cultivated positive feelings.

"I love playing with my basketball … not in a team, alone, shooting. I am very good at shooting. I love my ball. (…) because I relax and when I relax I get tired and get to sleep faster.“

“Swimming (…) I think I sleep faster on days I had a swim”

Exercise has been shown to reduce and stabilize cortisol levels over time (McDonnell et al., 2015, pp. 311–322) which can have a positive effect on sleep.

Sensory autonomy during bedtime

This study highlights the importance of sensory issues in relation to sleep, such as touch, feel and smell of nightwear and bedding, for example. Autistic adolescents explained that they had personalised the sleep hygiene rules to fit their need to achieve the right level of sensory stimulation.

“I am sensitive during sleep time. Having a specific set of clothes helps me focus less on my skin sensations."

“If I hold this [pointing to the photo of her holding a soft bunny toy] then I know where my hand is (…) My body is more comfortable.”

Additionally, sharing intimate and predictable time with family members provides essential emotional warmth and safety which is valued by autistic young people as a facilitating factor when they try to have a good night’s sleep. 

Sense of agency during day time

The research highlighted the importance of the daytime ‘feel good’ factor on quality of sleep. The feel good factor includes activities, interests, learning and social experiences, within and outside of school, that meet their needs. Being able to have more control and choice on how to spend time at school and home may cultivate positive feelings that promote better sleep.

“Happy thinking in bed (…) knowing that I will speak to people I like at school helps me fall asleep (…) it is all about happy thinking sometimes”.

It is important for sleep therapists to empower young people and their families, to evaluate the impact of daily activities and develop a balance between essential activities and those the young person chooses to do. 

Conclusion

The study provides evidence that healthcare practitioners should go beyond providing mainstream sleep hygiene rules, and instead work with autistic adolescents 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. 

Further information

Pavlopoulou, G., (2020). A Good Night’s Sleep: Learning About Sleep From Autistic Adolescents’ Personal Accounts. Frontiers in Psychology, 22 December. Open access