Thus far very little research has focused on siblings in early adolescent years growing up with an autistic sibling. Adopting a community-based participatory research (CBPR) approach, 11 typically developing sisters actively collaborated in the study to collect and analyse data as well as disseminate their experiences, needs and perspectives in their local communities. This is the first study to use a modified Photovoice methodology which provided typically developing sisters an active participatory role. The results highlighted the feelings, needs and thoughts the sisters expressed in their role as siblings, friends, but also as students and citizens with a passion for advocacy, and limited support in the community due to unhelpful attitudes of members of their community towards autism. The findings indicated that the current method used can successfully cogenerate research findings with family members by ensuring pathways for engaging local community. This is crucial in shifting the balance between vulnerability and resilience in families raising an autistic child. Furthermore, when knowledge about the lived experience is drawn directly from the perspective of the actual people (siblings) involved in the phenomenon (siblinghood and autism), a more appropriate, responsive and need-fulfilling strategy of supportive and proactive support systems can be initiated.

The experiences of siblings in early adolescent years who grow up with an autistic brother or sister have received very little research interest, especially in terms of sisters' experiences.Hence our understanding of wellbeing opportunities and challenges in siblings' everyday life is inadequate and not reflected in the current clinical practices.Semi-structured interviews utilising an active, non-judgemental and curious stance to explore how sisters make sense of their everyday experiences (inspired by the notion of mentalizing) were conducted to capture important experiences of nine typically developing female siblings.Interpretative Phenomenological Analysis (IPA) was employed. The master themes included:(i) sisters' interactions with their siblings-'I don't live with autism, I live with my sister' (ii) sisters' interactions with their parents-'Always there for us, but often asking too much', (iii) practical struggles of caring-'Like a lonely fighter, tired but always on duty', (iv) perceived sisters' needs-'I care about my brother and I want society to care about us'. As experts of their own lived experience, sisters shed light on their day-to-day experiences. The themes derived from their experiences may help to draw attention to an appreciation of everyday life including planning for the parts that remain a struggle. This latter point is discussed in terms of implications and adoption of an existential view of wellbeing for future research and practice.

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.

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