Sleep problems in children with autism spectrum disorder are prevalent and persistent but also treatable. Little is known about how and why parents of such children seek help for sleep disturbance. Via an online survey ( n = 244 respondents), we gathered information about parents’ attributions about children’s sleep problems and beliefs about causes and on sources of information about, and their decisions regarding, help-seeking. Eighty-two percent of parents reported seeking some kind of help for their child’s sleep disturbance, and the average parent had tried six different treatment strategies, most commonly medical. Alignment of parents’ treatment choices with empirical evidence about treatment efficacy was poor, but belief in effectiveness was closely related to frequency of use of a treatment. In a Principal Components Analysis, parental attributions loaded on two factors: one which suggests the sleep problems are viewed as intrinsic to autism and stable (factor one) and the other as located within the child, stable, and treatment resistant (factor two). These findings have important implications for parental education and clinical practice in the treatment of sleep problems in children with autism spectrum disorder. Lay abstract Sleep problems are commonly reported among parents of children with autism spectrum disorder (ASD). Without effective treatment, such problems are unlikely to resolve. To date, we know very little about how and why parents of children with ASD seek help for sleep disturbance. Via an online survey, we gathered information about how parents make sense of their children’s sleep problems, beliefs about their causes, sources of information, and help-seeking behavior. The analysis of responses from 244 parents revealed that parents commonly view sleep problems (a) as a consequence of their child’s ASD, and unlikely to change over time (stable), and (b) as located within the child (intrinsic), stable over time, and difficult to treat. Despite this, parents also rated sleep problems as being important to treat. Eighty-two percent of parents surveyed reported seeking some kind of help for their child’s sleep disturbance, and the average parent had tried six different treatment strategies, most commonly medical approaches (e.g. melatonin). The alignment between parents’ treatment choices and those strategies that are supported by research was poor, but belief in the effectiveness of treatments was closely related to how often the treatment was used. These findings have important implications for parental education and clinical practice in the treatment of sleep problems in children with ASD.
Needs and challenges facing parents/caregivers of children with autism spectrum disorder