OARacle Newsletter

In November, OAR’s Board of Directors authorized funding for seven applied autism research studies in 2023. These new grants, totaling $276,212, bring OAR’s total research funding to more than $4.7 million since 2002. This article is the last of the seven previews to be featured in The OARacle this year.   

Sleep concerns affect up to 86% of autistic children. Poor sleep has been shown to increase the chances of child anxiety, depression, affective issues, aggression, and disruptive behavior. A child’s inability to sleep has also been shown to be one of the biggest causes of everyday stress for parents. If not dealt with, sleep problems can persist into adulthood.

Behavioral sleep interventions are an effective way to reduce sleep problems in children; however, few studies have examined the efficacy of these interventions for autistic children. In addition, prior research studies, including this 2009 study, have found that high levels of parental stress are associated with reduced or no response to some parent-mediated behavioral interventions.

In this OAR-funded research study, Investigating a Behavioral Sleep Intervention for Youth with Autism: The Role of Parenting Stress, investigators Cameron Neece, Ph.D., and Tori Van Dyk, Ph.D., will evaluate an existing intervention for autistic children. The intervention has been used in autistic children ages 2 to 10 years and has shown effectiveness in improving subjective and objective measures of sleep, such as insomnia, sleep habits, and the time it takes to fall asleep.

The goals of the two-year study are to:

• Determine the effectiveness of the sleep education manual intervention in improving sleep problems in an ethnically, socioeconomically, and linguistically diverse sample of autistic children.
• Investigate the impact of parental consistency in implementing the intervention techniques.
• Examine how parenting stress impacts the effectiveness of the intervention in reducing the child’s sleep problems.

Cameron Neece, Ph.D., is a professor of psychology at Loma Linda University, California, and a licensed clinical psychologist. She has conducted several NIH-funded randomized clinical trials investigating interventions to reduce parenting stress and subsequent child behavior problems in autistic youth.

Tori Van Dyk, Ph.D., is an associate professor at Loma Linda University and a licensed clinical psychologist, certified pediatric behavioral sleep medicine provider, and supervising psychologist in the University’s pediatric sleep clinic. Her research evaluates the impact of sleep on daytime functioning in both clinical and nonclinical pediatric samples, including collaborations with Dr. Neece to better understand and improve sleep in autistic youth.

Methodology

The research study will consist of two phases. In Phase 1, the researchers will put together two stakeholder focus groups with eight participants drawn from the group of parents who participated in a pilot study of the intervention and seven behavioral sleep interventionists, three of whom will be drawn from pilot study participants.

Based on their feedback, the research team will adjust the intervention to meet the needs of the children, parents, and interventionists who will participate in the study, with a particular focus on refining the study to meet the needs of low-income, culturally and linguistically diverse families.

In Phase 2, trained clinical psychology doctoral students will deliver the intervention and the control intervention in three biweekly, one-hour online sessions. The sleep intervention covers topics like sleep hygiene; sleep duration, timing, and regularity; bedtime routines; and minimizing bedtime resistance, night awakenings, and co-sleeping.

The intervention’s first session is dedicated to providing structured parent education and identifying an intervention plan individualized to each family. Every family receives specific guidance and resources on sleep timing and developing a bedtime routine with a visual schedule. In the second and third sessions, the intervention providers will give more tailored guidance on addressing problems specific to the family, such as sleep resistance, for example, in addition to helping parents resolve barriers to implementing the recommended strategies.

The control intervention will be an adaptation of an online health education program, designed as a control condition for mind-body interventions. The research team will use three sessions from the control intervention focusing on child exercise, child nutrition, and managing the child’s healthcare.

Researchers will recruit 40 autistic children, ages 3 to 10, and their primary caregivers. To ensure that participants include a diverse group of parents and children, the researchers will recruit from three organizations, including the Loma Linda Youth and Family Center, the Inland Empire Regional Center, and the University’s pediatric sleep clinic. All of the children will have sleep problems, such as difficulty falling asleep, maintaining sleep, early morning awakenings, or insufficient sleep, that are not caused by a condition known to affect sleep or the risk of organic sleep disorder.

Evaluation

A series of well-established measurement tools will be administered at baseline, after each intervention session, immediately after the completion of the intervention, and at 10-week follow-up. These measures will assess child sleep, parent treatment fidelity, and parental stress.

Practical Relevance

Outcomes from the study will improve the lives of children with autism and their families by:

• Refining and testing an intervention with the potential to improve sleep in autistic children. Beyond sleep’s effect on health, it also affects children’s ability to function academically, physically, and emotionally; core symptoms of autism, such as stereotyped, restricted, and repetitive behavior; and parents’ wellbeing.
• Making the intervention applicable and accessible to diverse, underserved families. Most studies of behavioral sleep interventions for autistic children have been with primarily white, English-speaking, moderate- to high-income families. Yet research shows that low-income and single-parent families are more likely to have autistic children. When treatments like this sleep intervention are made easily available to parents, they reduce barriers to care, giving children and their parents access to potentially improved outcomes.
• Supporting parents as the critical agents of change in providing the intervention to their children so that it is effective. The researchers believe that the intervention will be more trustworthy for parents if they know that parents involved in the study and pilot study provided feedback to aid in the revision of the final intervention. In addition, by investigating the role of parental stress, the study will highlight the need for clinical attention to reducing parental stress in order to positively affect autistic children’s sleep.

This study has the potential to make available a behavioral sleep intervention that is easily accessible to parents and has been revised based on diverse parent feedback and tested in English and Spanish. If it improves autistic children’s sleep, it can improve the lives of autistic children and their parents from a wide range of backgrounds.

Sherri Alms is the freelance editor of The OARacle, a role she took on in 2007. She has been a freelance writer and editor for more than 20 years.