“I don’t think there’s anything typical about it.” Exploring sleep in families with a child with autism spectrum disorder

Abstract

Purpose: Sleep is an important mechanism for everyday functioning and childhood development. Children with autism spectrum disorder (ASD) tend to have high rates of sleep problems. This interpretive phenomenology-informed study aims to fill the gaps on the experiences of family sleep with a child with ASD. Methods: Purposive sampling was used to recruit parents of at least one child with ASD. Fifteen in-depth, semi-structured interviews were conducted with parents. Findings: Themes included (1) environmental factors contributing to sleep, (2) individual and family consequences of sleep loss, (3) parental internalization of emotions and conflicts surrounding sleep, (4) mitigation strategies used to improve sleep; and (5) the knowledge and beliefs that parents have about sleep. Discussion: Findings suggest that parents understand what it takes to achieve sleep in their homes and carry mental and emotional burdens related to sleep, focused on making sure their child(ren) get enough sleep.