A Good Night’s Sleep: Learning About Sleep From Autistic Adolescents’ Personal Accounts

Abstract

BackgroundSleep is a strong predictor of quality of life and has been related to cognitive and behavioral functioning. However, research has shown that most autistic people experience sleep problems throughout their life. The most common sleep problems include sleep onset delay, frequent night-time wakings and shorter total sleep time. 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 is to explore together with autistic adolescents their sleep-related practices before bedtime and during the day which contribute to a good night’s sleep.MethodsFifty-four autistic adolescents collaborated with an academic researcher in a novel adapted photo-elicitation methodology, rooted in a Lifeworld framework. The adolescents were invited to collect and analyze their data. The data were also presented in a community knowledge exchange event.ResultsSeveral self-reported practices that facilitate better nocturnal sleep were identified. Those were organized into two thematics: Evening/bedtime factors and Day time factors. These included practices such as personalized sensory and relaxation tools before bed and during night-time, engaging in a range of physical activities during daytime and accommodating personal time to engage with highly preferred and intense focus activities and hobbies. It also included spending time in predictable and fun ways with family members before bedtime.ConclusionThis is the first time that a study uses a novel methodological approach based on personal accounts elicited by photos rooted in a Lifeworld framework to describe personal sleep-related practices before bedtime and during the day to identify a “good night of sleep” in autistic adolescents. The outcomes from the current study showed that sleep facilitating factors are in a direct contrast to the sleep hygiene recommendations. Therefore, it is thus important for the sleep practitioners and healthcare providers to move beyond providing standardized sleep hygiene interventions. A Lifeworld led care model that pays attention to personal experiences, promotes sense of agency, evaluates both autism-specific strengths and struggles could and should complement biomedical approaches.Lay SummaryThis is the first study to examine autistic adolescents’ self-reported sleep habits and factors which facilitate autistic adolescents’ sleep by employing adapted photo-elicitation interviews. This study is innovative in at least three ways. First, it examines the factors that may facilitate a good night’s sleep through personal accounts of autistic adolescents. Second, this is the first sleep study to adopt a collaborative, flexible approach to understanding positive sleep factors in the lives of autistic adolescents. This study employed a personalized approach into collecting, categorizing, coding, and analyzing qualitative data allowing autistic adolescents and the researcher to work together across key stages of data collection and data analysis. Third, we adopted a theoretical framework that allows us to consider autistic adolescents in both agency and vulnerability positions when it comes to their sleep difficulties. Our results highlight that sleep should be treated individually and in relation to the environmental and personal factors that affect each autistic person. Hence, researchers and professionals may benefit from working collaboratively with autistic adolescents with the aim to identify individual strengths and adopt a positive narrative around sleep. Furthermore, it is important to further examine both the daytime and evening factors that may affect bedtime and the quality and quantity of sleep as well as the role of intense focused interests and physical activities that cultivate positive feelings and help autistic people to relax before bedtime.

What I Wish You Knew: Insights on Burnout, Inertia, Meltdown, and Shutdown From Autistic Youth

“…Some of the strategies they have found helpful, such as supportive interactions and engaging in fun activities, are outside conventional clinical approaches. This is similar to findings from Pavlopoulou (2020) who elicited personalized accounts of effective sleep strategies from 54 autistic adolescents. Like the strategies described by the youth in our study, the successful sleep strategies identified sometimes aligned with conventional wisdom pertaining to sleep (e.g., relaxation before going to sleep), but sometimes diverged (e.g., control over sensory stimuli at bedtime).…”

‘I can actually do it without any help or someone watching over me all the time and giving me constant instruction’: Autistic adolescent boys' perspectives on engagement in online video gaming

“…Thus, there has been very little focus on enjoyment for enjoyment's sake, and what kinds of intrinsic motivation that autistic people (particularly CYP) may get from their hobbies and interests. One approach to understanding the impact of gaming on well-being in CYP from their own perspective is through the Lifeworld Framework (Pavlopoulou, 2020;Pavlopoulou & Dimitriou, 2019). The lifeworld framework is an epistemological framework which emphasizes the importance of a collaborative approach to understanding a young person's personal strengths, challenges and aspirations.…”

Participatory Autism Research: How Consultation Benefits Everyone

“…Fortunately, more recently there has been increasing recognition that it is time for change, with autistic advocates, academics and activists insisting that participatory research is the way forward (e.g., Pellicano and Stears, 2011;Milton and Bracher, 2013;Fletcher-Watson et al, 2019;Gowen et al, 2019). Indeed, there are some great examples emerging of collaborations that have involved the autism community in priority-setting and research (e.g., Nicolaidis et al, 2011Nicolaidis et al, , 2013Bertilsdotter Rosqvist, 2019;Crane et al, 2019;Fletcher-Watson et al, 2019;Vincent, 2019;Young et al, 2019;Pavlopoulou, 2020;Pellicano et al, 2020). One gold-standard example of how researchers, autistic people and their allies can effectively collaborate is the "Shaping Autism Research" seminar series (Fletcher-Watson et al, 2019).…”

“…Following this, the consultation group created visual aids that were then used for dissemination at a community exhibition alongside panel discussions and workshops involving various members of the autism community (parents, psychologists, autistic people, etc.). By adopting an experience-sensitive participatory approach grounded within the lifeworld framework (see Hemingway et al, 2015 andPavlopoulou, 2020), the authors acknowledged the autistic participants as active agents in research, recognized their autonomy of thought, perspectives and ideas, and facilitated the translation of findings into practice (see Pavlopoulou, 2020).…”

“…Although there is increasing community involvement in research, autistic individuals with communication differences, such as those who are non-speaking or minimally-speaking (Lebenhagen, 2020) and those with a learning disability (Long and Clarkson, 2017) are less well-represented in this movement (e.g., in Fletcher-Watson et al, 2019;Pavlopoulou, 2020 andCassidy et al, 2021b, the authors noted that their projects were not fully inclusive of these individuals). Importantly, people with communication differences may require personalized support, unique modes of communication, and well-planned engagement for their voices to be heard (Long and Clarkson, 2017;Lebenhagen, 2020).…”