Dr. Malow is an associate professor of neurology at Vanderbilt University and director of the Vanderbilt Sleep Disorders Center. She is currently conducting research in this area supported in part by an OAR grant awarded in 2006. Prior to joining the faculty at Vanderbilt, Malow was a tenured associate professor of neurology at the University of Michigan and director of the Sleep Medicine Fellowship Program and the General Clinical Research Center Sleep Program.
Sleep is a basic human need—like food and water. Although we do not yet know precisely why we sleep, we do know how we feel when we haven’t had enough sleep—tired, unmotivated, irritable, and just “on edge.” Unfortunately, getting a good night’s sleep can be particularly difficult for children with autism spectrum disorders (ASD), who may resist going to bed, have trouble falling asleep or staying asleep, or wake up too early in the morning. There can be many reasons for these sleep difficulties.
Sleep difficulties in children with ASD are common reasons why parents seek medical intervention for their children. Insomnia, which is difficulty initiating or maintaining sleep, is one of the most common sleep concerns reported in these children. Insomnia contributes to sleep loss, which adversely affects daytime functioning and may exacerbate problematic daytime behaviors, including inattention and aggression. The many causes of insomnia in children with ASD include alterations in brain chemicals that promote sleep, such as serotonin and melatonin, as well as coexisting psychiatric symptoms, such as anxiety.
Poor sleep hygiene (sleep habits) is a less-emphasized contributor to insomnia in children with ASD. Due to deficits in communication skills, children with ASD may not readily understand the expectations parents convey related to going to bed and falling asleep. Because parents of children with ASD must deal with multiple priorities and stressors, conveying these expectations in an effective way may be particularly challenging. Furthermore, these parents may lack the awareness that child-friendly alternatives to the “traditional” methods of promoting sleep in children (e.g., “crying it out”) do exist and can be implemented effectively.
The benefits of a parental sleep education program may go beyond promoting sleep in children with ASD. For example, the skills parents achieve in communicating expectations to their children may translate into other daily activities.
While previous research has been consistent in demonstrating the high prevalence of sleep disorders in children with ASD, many questions remain about the contribution of sleep hygiene to sleep difficulties and the effects of behavioral sleep interventions on children and their families. Behavioral treatments for sleep problems in children with developmental disabilities appear promising in improving sleep as well as daytime functioning of the child and reducing familial stress, although to date there have been only a limited number of studies with small samples of children.
My team is currently conducting a research program in sleep and ASD at Vanderbilt Kennedy Center for Research on Human Development. Team members include Wendy Stone, Ph.D., professor of psychology and director of the Vanderbilt Treatment and Research Institute for Autism Spectrum Disorders (TRIAD), and Susan McGrew, M.D., assistant professor of pediatrics.
The goals for our ongoing study are:
In March 2007, we conducted one parental education program, with a second session planned for later this spring and two additional sessions this fall. Five families participated in the first program, which consisted of three two-hour sessions held on consecutive Saturday afternoons. We provided child care to allow families to easily attend. Dr. McGrew; Suzanne Goldman, Ph.D., a sleep researcher specializing in actigraphy; and Kim Frank, a behavioral specialist with expertise in creating visual supports for children with ASD assisted me in conducting the sessions. Kay Artibee, RN, coordinated the sessions.
Sleep concerns expressed by the families included bedtime resistance, difficulty initiating sleep, night wakings, and restless sleep. Topics covered via presentations as well as breakout sessions included increasing afternoon light and daytime activity, promoting good sleep habits, developing a bedtime routine, enhancing the sleep environment, and optimizing parental interactions.
Prior to the educational sessions, parents completed surveys related to their child’s sleep and their own level of parental stress, and kept sleep diaries while their children wore actigraphy devices (wristwatch-like meters that measure activity and rest to estimate wake-sleep patterns). One month after the last educational session, these measures will be repeated to determine if the educational sessions resulted in improved sleep patterns and decreased parental stress.
We were pleased to have 100 percent attendance at all three sessions of our first educational program, and the feedback received from the families was highly favorable. Each family noted a substantial improvement in their child’s sleep patterns as a result of the program. Some of the “pearls” that families reported learning from the sessions included the importance of regular bedtimes and wake times, “timing” bedtime to coincide with when their child was maximally sleepy, keeping interactions during night wakings “brief and boring,” and using visual supports to teach expectations about bedtime.
We expect that our work will result in specific findings that will improve the sleep of children with ASD as well as their daytime behaviors and the stress on their families. Parenting a child with ASD is challenging, and dealing with the stressor of the child’s disturbed sleep can be overwhelming for the family, especially when it contributes to sleep loss and less-than-optimal daytime functioning in caregivers. In typically developing children as well as those with autism, sleep problems have been correlated with family or parental distress as well as with problematic daytime behavior.
Behavioral treatment of sleep problems in children with intellectual disabilities and challenging daytime behavior reduces parental stress, increases parents’ satisfaction with their own sleep and their child’s sleep, and heightens their sense of control and ability to cope with their child’s sleep. We anticipate that the parental educational sessions that we provide to parents will assist them in helping their children sleep through the night, thereby reducing their own stress, increasing their own overall functioning, and allowing them to provide maximal support to their children in overcoming their disabilities.
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