Children and adolescents need a healthy sleep pattern to fully develop and to perform their best during the day, but – as many reading this know all to well- sleep difficulties plague as many as 50%-80% of children with autism spectrum disorder (ASD)- and by default, their parents! And the consequences overflow to nearly every aspect of waking life.
Research has shown that children and adolescents with ASD who sleep poorly are more likely to engage in problematic daytime behaviors than children who get enough sleep, and that sleep disturbance is connected to anxiety, heightened sensory responses, aggression and poorer health outcomes in kids with ASD.
CAR researcher and developmental pediatrician Amanda Bennet, MD, MPH, empathized with the parents she’d see in her office, whose children’s sleep troubles were taking a difficult toll on the family over extended periods of time. With support from the Autism Speaks Autism Treatment Network, Dr. Bennett and her team set out to conduct the first large-scale study to look at the prevalence of sleep problems and patterns of sleep medication use in children with ASD patients and their families.
The team collected data from more than 1500 children and their parents, and it revealed a significant “disconnect” between parents and clinicians. Parents reported sleep problems in 71% of the children, but clinicians only diagnosed 30% of the children with a sleep disorder, indicating that parents’ concerns about sleep may not be reflected in the information gathered during a clinical visit.
Of the 30% of children who were diagnosed with a sleep disorder by a doctor, a little less than half (46%) were prescribed at least one medication to support better sleep; but these children who took sleep medications had more troublesome behaviors during the day and poorer quality of life overall.
“Given this evidence that sleep concerns are both common and associated with problematic daytime symptoms, it is important that primary care providers be vigilant to sleep concerns voiced by parents,” the researchers wrote in the study. However, there are barriers to this discussion on both sides of the exam table. Parents may think that sleep problems are “just a part of autism” or might be focused on other “daytime” behavioral concerns that could be the result of poor sleep. On the other side, health care providers may not have received training to implement behavioral sleep interventions for children with ASD, and given a lack of other options, turn to recommending medication when faced with parent’s concerns over a challenging sleep problem.
The causes of sleep difficulties in children with ASD are often complex. They may be related to health conditions like epilepsy or gastroesophageal reflux, which are fairly common in children with ASD; or it may be that challenges unique to autism, like difficulty with transitions or with understanding parent expectations regarding sleep, exacerbate problems with sleep hygiene or pediatric insomnia. Although some children require medications for treatment, a behavioral intervention might be more appropriate for others.
While the study findings will come as no surprise to families living through this first-hand, Bennett and her colleagues see this study as a starting point for improving support for families and improving screening tools and training for clinicians.
In the meantime, some factors that have been shown to improve quality of sleep include calming bedtime routines and relaxing bedtime environments. Sleep medications can have their benefits, but establishing a nightly routine can ease the anxiety and stress of sleep disturbances. Parents learning sleep education can also help their child develop nighttime routines that ease the difficulties of sleep. Visit the CAR Autism Roadmap ™ for more information and tips on improving sleep for children with ASD.