Open Society

But disabled friends still feel safer to be around. I think they always will. There’s something about knowing what it’s like to have an unpredictable body that often allows you to feel deeper levels of empathy for others with unpredictable or disabled bodies. I know my disabled friends won’t tell me not to let my disability define me just because I’m talking a lot about it. I don’t need to censor myself. I don’t need to hide anything. I don’t need to pretend. I can be me – a creative, funny disabled person who is struggling with health issues while dealing with grief over the things I’ve lost since my injury and fighting ableism in a world that expects me to be something I can no longer be. They like that person. In all her abilities, limitations, and complexity.    What my disabled friends essentially show me is the beauty of being disabled – which for me is most evident in the deep and fierce connections disability fosters.

that attention as a scarce psychic resource is impacted by material conditions and not necessarily the other way around; that poverty and hardship is a cause of inattention and a lack of cognitive resources, not an effect.

The personal accounts of autistic adolescents in our study verify the importance of sensory comfort and lowering anxiety before and during bedtime and are in line with the work of Mazurek and Petroski (2015, pp. 270–279) who found strong links among sleep problems, sensory responsivity and anxiety. Furthermore, our results show that adolescents have a wide range of personalized sleep habits which help them to accommodate a good night’s sleep. For example, they feel that predictable interactions with family members may facilitate a relaxing routine before bedtime while daytime factors such as physical activity, positive school experiences and sufficient time for hobbies will also result in good nocturnal sleep. The results emphasize the humanistic value and holistic contextuality of lived experience in sleep research. Our results suggest that it is imperative to facilitate sleep autonomy during bedtime and shift from generalized sleep hygiene practices created and used by non-autistic people to personalized sleep practices for the autistic population.

Sleep 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.

Several 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.

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.

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.

In this study, based on the autistic adolescents’ personal accounts shared in the results section we have identified 4 key domains who interact with each other and together they have a positive impact on sleep which is discussed below. Focused Interests Activities such as focusing on special interest objects may help autistic people to achieve a flow state (Csikszentmihalyi and Csikzentmihaly, 1991). This type of activity might be interpreted as a meaningless or repetitive behavior by parents and can be interrupted to redirect the autistic person to comply with a sleep hygiene rule. Thus, parents and professionals should consider that focused interest activities, objects, and thoughts might help the autistic person to be in a flow state which is beneficial for reducing stress. Promoting and planning daily activities that incorporate focused interests can be an important area in future sleep management practice. Identifying flow states for autistic people and trying to develop a flow plan during daytime and before bedtime might have a positive impact on sleep. Physical Activity For autistic adolescents, it is important to have opportunities to exercise in their own time and space to avoid experiences which can interfere with their personal space, sensory issues, anxiety-provoking group interactions or body confidence. 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. Sense of Agency During Daytime We found potential evidence on the importance of the daytime ‘feel good’ factor as defined by autistic adolescents on sleep. 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. Based on the current findings, autistic adolescents are most likely to have a good night’s sleep when they interact with people who meet their needs. The subjective experience and the concept of autistic adolescents’ locus of evaluation should be prioritized if we aim to understand the social determinants of wellbeing. It is thus important for sleep therapists to empower adolescents and their families to evaluate the impact of daily activities and develop a balance between obligatory and desirable activities. Sensory Autonomy During Bedtime It has been well established that autistic people experience unique experiences and a sense of control over sensory stimuli may have an impact (Robertson and David, 2015, pp. 569–586). The autistic adolescent should be seen as the expert of his/her sensory profile and allowed to modify his/her environment. Hence, practitioners need to consider that the parental as well as their own perspective may promote or hinder sleep activity. Sleep should be treated at an individual level in relation to the environmental factors: flexibility, agency and personalization may prove more helpful than manualized approaches that do not consider the autistic perspective. More comprehensive sensory-based assessment through focused conversations with adolescents and their family members may advance the development of sleep management by identifying factors that influence the levels of sensory stress experienced by autistic people before and during bedtime.