Autism and sleep across development: Advancing research and treatment through co-production

Abstract

Sleep difficulties are highly prevalent in autistic individuals throughout their lifespan and are a substantial concern for these individuals, as well as parents/caregivers. These difficulties have been exacerbated by the COVID-19 pandemic, and the long-term effects are unclear and should be monitored. Despite considerable progress, sleep disorders continue to be underdiagnosed and left untreated in autistic youth. The sleep issues faced by autistic youth often differ from those experienced by neurotypical groups in presentation and treatment approaches, underscoring the urgent need for autism-specific validated diagnostic pathways as well as personalized treatments tailored to their age group. A step towards progress entails incorporating sleep screenings as a routine part of healthcare for autistic individuals at various developmental stages as sleep issues during childhood may differ from those in adolescence and adulthood. Future research in this area should aim to engage in community-based research partnerships with autistic individuals and parent-caregivers to maximize the benefits of future research for the community. A collaborative effort is necessary to address their distinct sleep hygiene practices and unique needs, which appear to differ from the general population. Through this co-produced commentary, we aim to contribute to the ongoing dialogue surrounding sleep difficulties in autistic youth, fostering a collaborative approach to improve understanding of these disturbances, their diagnosis, and how tailored treatments may be available.

Lay Abstract

Autistic individuals often face sleep difficulties that persist across their lives, causing concern for those experiencing them and their families/caregivers. The COVID-19 pandemic has heightened these challenges, with unclear long-term effects. Despite progress, sleep disorders in autistic youth are still underdiagnosed and untreated. Their sleep problems may differ from neurotypical peers, emphasizing the need for tailored solutions. Regular sleep screenings and collaborative research partnerships are essential steps in understanding and addressing their unique sleep needs.

Recently, there has been an increase in calls for progress toward the treatment of sleep disorders among the autistic population, as there is a growing recognition that these difficulties are highly prevalent and could have developmental impacts (Lord et al., 2022). This change in perspective has arisen, in part, from research demonstrating significant correlations between sleep disturbances and cognition, behavior, mental health and family function within this population (Cohen et al., 2014; Deliens & Peigneux, 2019; Henderson et al., 2023; Lord et al., 2022; Luongo et al., 2021; Schreck & Richdale, 2020; Shaw et al., 2022). Specifically, sleep disturbances have an impact on cognition, relating to variation in memory formation and verbal skills (Calhoun et al., 2020; Shaw et al., 2022). Evidence suggests that sleep difficulties may be related to brain development (MacDuffie et al., 2020; Shen, 2018). Moreover, sleep disturbances may be linked to the increased manifestation of core and co-occurring autism features, including repetitive behaviors, anxiety, and aggression (Deliens & Peigneux, 2019). Sleep is also intertwined with physical health and family functioning, as poor sleepers often report lower health-related quality of life and increased parental stress (Delahaye et al., 2014; Krakowiak et al., 2008). Recent investigations have shown robust longitudinal relationships between sleep and quality of life in autistic individuals across their lifespan (Deserno et al., 2019; Lawson et al., 2020; McLean et al., 2021). Furthermore, sleep problems consistently rank highest among parental concerns when identifying crucial intervention targets (McConachie et al., 2018). Given the profound influence of sleep on numerous aspects of the daily lives of autistic individuals, the autism research community must move forward to facilitate regular sleep screenings — clinical assessments aimed at evaluating sleep patterns and quality — and increase attention toward sleep as a therapeutic target across the lifespan in autism.

While there is now greater community awareness of the sleep difficulties faced by autistic individuals and their impacts, sleep disorders are still often underrecognized and left untreated in this population, as general pediatricians may not uniformly query the status of sleep health. Pilot work has suggested that many pediatricians are aware of the importance of sleep, but barriers to consistent screening include access to validated short screening assessments (Edwards, 2018). The absence of regular sleep screenings is particularly significant since these sleep disturbances not only diverge from the experiences of their non-autistic peers (Richdale & Schreck, 2009) but also, show a trend for increasing difficulty across age (Goldman et al., 2012). Despite the presence of sleep issues across the lifespan in this population, there has been a significant lack of focus on both diagnosis and intervention in autistic youth. This scarcity of comprehensive research amplifies the importance of shedding light on the specific sleep challenges faced by autistic youth and underscores the urgency of prioritizing the co-creation of diagnostic tools and treatments, involving autism community members, including autistic individuals and their families, at each step in the process. While the profile of deficits seems to suggest significant sleep problems and parent concerns, we in the field will only best understand where to focus their efforts toward diagnosis and intervention when the lived experience of autistic individuals, and their level of concern, is taken into account.

Autism and sleep in a developmental context

The majority (50–80%) of autistic people display sleep difficulties at some point in their lifespan (Schreck & Richdale, 2020), compared to neurotypical comparison groups where the range is 9% to 50% (Allik et al., 2006; Couturier et al., 2005; Malow et al., 2006; Polimeni et al., 2005). These challenges can emerge quite early, even before a formal diagnosis is made (Sacrey et al., 2015), and are particularly prevalent among autistic children (Hirata et al., 2016). These issues include difficulties with sleep initiation, maintenance, duration, and quality (Cohen et al., 2014; Malow et al., 2006). About 60% of autistic children meet the criteria for insomnia, which is the most commonly reported parental sleep concern for this group (Couturier et al., 2005; Richdale & Schreck, 2009; Singer et al., 2022; Souders et al., 2009). Additionally, autistic individuals show difficulty with circadian rhythmicity and often show circadian misalignment with sleep states, meaning that the regularity in their day-to-day sleep is not as strong, a facet of sleep often under hormonal control, including melatonin levels (Carmassi et al., 2019; Martínez-Cayuelas et al., 2022; Souders et al., 2017). Alongside these symptoms, autistic children also have a higher incidence of parasomnias — disruptive sleep disorders encompassing activities like sleepwalking and night terrors (Doo & Wing, 2006; Schreck & Mulick, 2000).

These sleep-related difficulties persist beyond childhood and can even intensify as individuals transition into adolescence and adulthood (Allik et al., 2008; Baker et al., 2013; Goldman et al., 2017; Mazurek et al., 2019; Montazeri et al., 2020). In fact, research suggests that around 80% of adolescents and young autistic adults may experience sleep problems (Godbout et al., 2000; Mannion et al., 2013; Øyane & Bjørvatn, 2005; Richdale et al., 2014), making them one of the most frequent comorbidities consistently highlighted by both families and healthcare practitioners within this age group (Powell et al., 2021; Richdale & Schreck, 2009). However, while sleep problems persist, autistic adolescents exhibit distinct patterns of difficulties, including more pronounced issues with delayed sleep onset, shorter sleep duration, and daytime sleepiness compared to younger autistic children (Goldman et al., 2012). Furthermore, research indicates that the symptoms of insomnia can become more pronounced during this period, accentuating the sleep challenges that autistic adolescents experience (Baker & Richdale, 2017; Goldman et al., 2017; Montazeri et al., 2020; Øyane & Bjørvatn, 2005). Lastly, adolescents exhibit heightened challenges related to delayed sleep phase, impacting both sleep onset and morning awakening, when compared to their younger autistic counterparts (Liu et al., 2006; Richdale & Prior, 1995).

Sleep disturbances during this critical period are common among neurotypical adolescents, often attributed to a combination of factors including pubertal maturation, irregular sleep schedules, early school start times, heavy extracurricular commitments, and increased technology use (Richardson et al., 2021; Sadeh et al., 2009; Short et al., 2019). However, these sleep difficulties tend to be more prevalent in autistic adolescents compared to their neurotypically developing peers. For instance, Baker et al. (2013) found that autistic adolescents were three times more likely to experience sleep problems in comparison to their neurotypical counterparts. This group also demonstrated decreased sleep efficiency and a higher likelihood of experiencing symptoms of insomnia. These differences persist even when autistic individuals do not spontaneously complain of sleep problems (Limoges et al., 2005, 2013; Øyane & Bjørvatn, 2005). In fact, using polysomnography, Limoges et al. (2005) showed that the sleep architecture in young autistic adults (mean age = 21 years) without histories of sleep disorder diagnoses was distinct from neurotypically developing young adults. This profile includes longer sleep latency, more frequent nocturnal awakenings, lower sleep efficiency, increased duration of stage 1 sleep, reduced non-REM and slow-wave sleep. Additionally, this group exhibited fewer stage 2 EEG sleep spindles and a lower number of rapid eye movements during REM sleep, when compared to control participants. A subsequent study (Limoges et al., 2013) revealed a similar pattern of sleep among non-complaining adults aged 16 to 27 years. Furthermore, autistic adolescents tend to experience more severe circadian sleep desynchronization, such as delayed sleep phase, leading to later bedtimes and wake times, when compared to their peers. For instance, in a study employing wristwatch monitoring to measure wrist skin temperature among other variables (i.e., Kronowise), Martínez-Cayuelas et al. (2022) revealed that, in contrast to neurotypically developing adolescents, autistic adolescents demonstrated a lower amplitude—signifying reduced consolidation of daytime activity and nighttime sleep. More comprehensive research is needed to fully understand the impacts of these increased sleep changes on adolescents and their families, highlighting the importance or partnerships and co-production in sleep research.

In this context of sleep disturbances among autistic adolescents, it is important to consider that recent reports suggest that this population experienced even greater sleep difficulties during the COVID lockdown on average, exacerbating the frequency and negative effects of phase delays, anxiety, and night terrors (Bruni et al., 2022; Dal Pai et al., 2022). As we enter a new stage of the pandemic, it is crucial to continue to monitor increased sleep disturbances (e.g., decreased sleep duration and increased latency to sleep, increased bedtime resistance and night waking), along with disruptions in behavioral patterns (e.g., depressive/anxiety symptoms), as ongoing and unresolved sleep problems are possible (Dal Pai et al., 2022). In fact, COVID-19 survivors may face a higher risk of experiencing long-term sleep symptoms (Fernández-de-las-Peñas et al., 2021), and future research should address the additional impact of COVID infection and long-COVID on the sleep of autistic individuals longitudinally.

Next steps for autism and sleep research

The specific sleep problems experienced by autistic youth differ from those experienced by neurotypical groups, suggesting that population-specific comprehensive studies are required for sleep disturbance diagnosis and treatment (Banaschewski et al., 2022; Malow et al., 2012; Shui et al., 2021). Further, it is important for continued efforts to acknowledge that sleep problems can occur across the lifespan, and therefore, a developmental approach to treatment and research is needed (Lord et al., 2022). For instance, strategies that prove effective for toddlers might not be as effective later on during youth due to the presence of different sleep issues (Goldman et al., 2012). While clinicians commonly use subjective sleep questionnaires (Bruni et al., 1996; Owens et al., 2000) for initial and follow-up assessments in autistic children, relying solely on these tools may result in an incomplete understanding of the sleep experiences of autistic individuals. It is crucial to incorporate objective measures because autistic individuals might not be aware of their sleep difficulties, even when these issues are evident in objective sleep assessments (Limoges et al., 2005, 2013; Øyane & Bjørvatn, 2005). Furthermore, sleep questionnaires have limitations because they are tailored for the general population and utilize pre-established classification criteria when examining sleep habits and patterns. Thus, the unique sleep experiences of autistic individuals may not neatly fit into these predefined categories.

There is burgeoning therapeutic progress; however, and a few evidence-based sleep treatments are becoming available for youth, spanning approaches beyond the scope of this commentary (Cuomo et al., 2017; Esposito et al., 2020; Malow et al., 2012; McCrae et al., 2021; Schroder et al., 2021). Notably, among the sleep treatments tailored to adolescence in autism, the approaches predominantly used as the initial step include parent education, psychoeducation/sleep hygiene, and other behavioral interventions (Georén et al., 2022; Loring et al., 2018; Malow et al., 2012; McLay et al., 2021; Moss et al., 2014). Moreover, alternative treatments, such as exercise, water-based interventions, weighted blankets, or a pillow that plays soothing sounds, appear promising in assisting parents in addressing their children's sleep difficulties during their youth (Ansari et al., 2021; Bolic Baric et al., 2023; Schoen et al., 2017; Tse et al., 2022). Additionally, remote sleep toolkits and treatment resources are now available from the Autism Treatment Network/AIR-P, which may allow parents to develop the necessary skills to support their child's sleep needs (Autism Speaks, n.d.).

Recent research has suggested that autistic adolescents may require different treatment approaches for sleep disturbances, which emphasize individualized needs for anxiety reduction (e.g., engaging in stimulating activities before bedtime in order to attain the appropriate level of sensory stimulation) but may oppose neurotypical sleep hygiene recommendations (Pavlopoulou, 2020). Future research should continue to identify autism-specific sleep problems and needs, separate from comorbid difficulties (e.g., IDD, ADHD, or cognitive delay) (Díaz-Román et al., 2018). Given these considerations, it becomes of paramount importance to engage autistic individuals in their intervention process through participatory approaches at various tiers—consultation, involvement, participation, and co-production (Stark et al., 2021). These approaches leverage the unique insights, preferences, and needs of the target group, ensuring that the resulting treatments are more relevant, effective, and tailored to their specific requirements (Brownlow et al., 2023; Fletcher-Watson et al., 2019; Zhu et al., 2022). Participatory strategies align with the concept of tailoring treatments for sleep-related issues to individual characteristics within the framework of personalized sleep medicine (Grunstein, 2010). In line with this, emerging digital technologies offer avenues to promote sleep health, streamline the identification of sleep disorders, facilitate effortless sleep tracking, and enable the personalized customization of sleep environments and interventions (Perez-Pozuelo et al., 2020).

Notably, participatory approaches must involve autistic individuals, their caregivers, researchers (autistic and non-autistic), healthcare professionals, and community members working collaboratively, with equal footing in the decision-making process related to setting goals, shaping processes, and determining outcomes (Fletcher-Watson et al., 2019; Stark et al., 2021). As optimal sleep is influenced by a multitude of interacting factors — spanning the individual, family, peers, school, community, and public policy (Short et al., 2019) — the engagement of a broader array of stakeholders in the co-production process could potentially result in improved outcome variables, including factors such as sleep quality and duration as well as broader impacts on physical and mental well-being (Batalden et al., 2016; Dunston et al., 2009; Filipe et al., 2017). For instance, it becomes pivotal to involve family members of autistic individuals, including siblings, when identifying effective sleep interventions (Pavlopoulou & Dimitriou, 2019). Furthermore, to enhance the utility of research outcomes, it is crucial to actively involve the autistic researchers in autism research. Recognizing that the non-autistic researchers may face challenges in fully comprehending the autistic perspective, scientific decisions should be shaped by direct engagement and input from both autistic and non-autistic researchers (Dwyer et al., 2021).

In the context of health interventions, participatory methods have demonstrated their effectiveness not only among neurotypical groups (Hawkins et al., 2017; Marsilio et al., 2021; Redman et al., 2021; Smith et al., 2022), but also in other populations (Armitt et al., 2022), including the autistic community (Nicolaidis et al., 2019; Taylor et al., 2023). Participatory techniques have also shown efficacy in addressing sleep difficulties within the general population (Gruber et al., 2016; Rapaport et al., 2018), including interventions specifically designed to tackle insomnia (Coteur et al., 2022; Schneider et al., 2020), which is a prevalent issue among autistic individuals. Similarly, these methods have been effectively employed to alleviate sleep-related challenges in individuals with developmental disabilities, including autistic adolescents (Sutton et al., 2020). Specifically, three studies have embraced participatory methods that consider the specific needs of autistic youth in the context of sleep treatments. In a study conducted by Pavlopoulou (2020), a photo-elicitation approach was employed to effectively illustrate how autistic adolescents evaluated and depicted their sleep habits and daily activities, with the goal of identifying factors contributing to a restful night's sleep through personal narratives. Although the study did not use a full co-production model across all aspects, including study development, implementation, and evaluation, it nevertheless stands as an initial step toward engaging in a dialogue about sleep with autistic youth. Importantly, this study emphasizes that all adolescents reported experiencing benefits when their parents supported their sleep autonomy and allowed them to engage in activities driven by their own choices and preferences. This study underscores the absence of a “one-size-fits-all” approach, as even within this sample, a variety of pre-bedtime sleep routines were observed. This concept is also echoed in studies by Van Deurs et al. (2019, 2021), which evaluated the effectiveness of personalized behavioral sleep treatments involving input from both autistic adolescents and their parents. These studies demonstrate significant progress in developing individualized treatments based on the perspectives of autistic adolescents. However, they also underscore a critical gap in the current research landscape, emphasizing the necessity for further exploration of treatments that focus on participatory methodologies. This is particularly important to address the complex interplay between autism and sleep during this critical period of development. They also highlight the pressing need for future research to employ similar participatory approaches, seeking ways to include individuals with severe learning disabilities and/or limited verbal communication within the study framework. Through these inclusive efforts, we can lay the foundation for personalized approaches that help individuals across the autism spectrum, improving their well-being and overall quality of life. In light of these factors, for more effective enhancement of sleep treatments targeted at autistic youth, it is recommended to embrace co-production as a collaborative effort to collectively address their unique sleep challenges and hygiene practices. By integrating diverse perspectives, including sensory considerations, individual routines, and caregiver roles, personalized strategies can be devised that acknowledge individual differences and values while emphasizing autonomy. By blending quantitative sleep metrics with qualitative insights from both autistic youth and their caregivers, this collaborative process seeks to enhance sleep quality while fostering community understanding and involvement. The ultimate goal is not only to improve sleep habits but also to empower autistic youth to achieve more restful and comfortable nights of sleep.

Conclusion

Based on current research, sleep may be of significant concern for autistic individuals. Given this growing field, research co-production is essential to target the aspects of sleep that could be supported. Sleep screening should become a routine medical practice for autistic individuals throughout their lifespan, based on individual needs. Sleep disorders seen in autistic individuals, such as insomnia and circadian rhythm disorders, are responsive to treatment in neurotypically developing children; however, studies of such treatments could be expanded for autistic youth. Many existing treatments are behavioral in nature and may need to be adapted to better serve autistic individuals. Treatment trials for sleep disorders designed in collaboration with autistic individuals are needed to determine both the acceptance and efficacy of these behavioral treatments to address their distinctive sleep hygiene practices and unique needs (Pavlopoulou, 2020; van Deurs et al., 2019, 2021).

In conclusion, sleep health has a broad impact on the everyday well-being of autistic individuals, as healthy sleep and its benefits are essential for their participation in social activities, academic success, and work. This physical health factor has a substantial impact on the individual and the family system, and it is natural for scientific inquiry in this area to incorporate autistic researchers, community advocates, and co-researchers to drive research agendas based on lived experience and community goals. Studies aiming to address sleep needs in autism require population-specific and individualized approaches, and this research base will be best realized when these partnerships are fully explored in the future (Fletcher-Watson et al., 2019).

Abbreviations

IDD: Intellectual and Developmental Disability; ADHD: attention-deficit hyperactivity development