The treatment of sleep problems in autistic adults in the United Kingdom

Halstead, Elizabeth, Sullivan, Emma, Zambelli, Zoe, Ellis, Jason and Dimitriou, Dagmara (2021) The treatment of sleep problems in autistic adults in the United Kingdom. Autism, 25 (8). pp. 2412-2417. ISSN 1362-3613

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Abstract

Sleep problems are one of the most common complaints in autistic adults. This study aimed to report the perspectives of autistic adults in the United Kingdom on treatment of their sleep problems. A total of 288 autistic adults living in the United Kingdom completed an online survey including assessments of their sleep quality using the Pittsburgh Sleep Quality Index, reporting their experiences and preferences of sleep treatment with UK healthcare professionals and, their experiences of self-management of their sleep. Self-report data revealed 58% of participants had not attended a consultation with a healthcare professional regarding their sleep problem despite 90% meeting the criteria for poor sleep quality (based on the Pittsburgh Sleep Quality Index). Of the participants who attended a consultation for their sleep, 72% were prescribed medication and 60% were not satisfied with the outcome. Self-management of sleep problems was not effective for 80% of participants; 41% reported a preference for non-medication options such as education, advice and talking therapies for sleep treatment. This report highlights the need for a fundamental shift in the consideration of sleep problems in autistic adults given the high levels of co-morbidity. The development of successful management strategies in adulthood that importantly considering autistic adults’ preferences could reduce sleep problems and overall improve quality of life for autistic adults. Long term this could also reduce the need for prescribed medication in this population. Lay abstract Sleep problems are one of the most common complaints by autistic adults. This study aimed to report the perspectives of autistic adults on treatment of their sleep problems; 288 autistic adults living in the United Kingdom completed an online survey which assessed their sleep quality. We also gathered data on experiences and preferences of sleep treatment with UK healthcare professionals and their experiences of self-management of their sleep; 58% of autistic adults never had a visit with a healthcare professional regarding their sleep problem, despite 90% meeting the criteria for poor sleep quality. Some of those who attended a consultation for their sleep were prescribed medication (72%), but 60% were not satisfied with the outcome. The participants also reported that sleep self-management was not effective (80%); 41% reported a preference for non-medication including education, advice and talking therapies for sleep treatment. This report highlights the need for a fundamental shift in treatment of sleep problems in autistic adults. The current treatments are not resolving sleep issues; hence, it is imperative to develop management strategies that considers autistic adults’ preferences, reduces sleep problems and thus improves quality of life for autistic adults.

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