Research Updates: Bringing Sleep and Autism into Community Settings

Beth Malow, MD, shares current research updates on sleep and autism. She highlights the multifactorial nature of sleep patterns and how they affect daily functioning and core autism traits like emotion regulation. The speaker provides helpful sleep questionnaires and tips for minimizing sleep resistance and night waking. Malow outlines preliminary work from ongoing sleep education trials for parents and therapists and emphasizes the efficacy of behavior-based interventions. She provides contact information for potential study participants and notes the lack of research surrounding common medications before the Q&A. 

• Handouts are online HERE
• Articles on melatonin are HERE
• Interested in participating in research at locations described i Save n the webinar? Email the research team at [email protected]

In this webinar:

1:00 – Introduction and case study
6:45 – Multifactorial sleep problems
12:13 – Emotion regulation and sleep
17:20 – Parent trainings for insomnia
23:00 – Sleep resistance and night waking
29:30 – Sleep education multicenter trials
36:30 – Medications
37:45 – Summary
39:00 – Q&A

Sleep in Autism

Dr. Malow notes the high prevalence of sleep problems in autistic children and how they impact both nighttime rest and daytime functioning (1:00). Various factors contribute to sleep issues in autism, which can generally be divided into biological, medical, and behavioral categories (7:45). 

Case Study

To illustrate the multifactorial nature of sleep issues, Malow presents a case study of Alex, a 10-year-old boy with autism, epilepsy, and anxiety. It takes him hours to fall asleep because he “cannot shut his brain down,” and he takes methylphenidate (Ritalin) in the morning and afternoon and lamotrigine (Lamictal) at night. Alex enjoys a soda and video games after dinner. He has restless sleep, snores loudly, and wakes multiple times at night. It’s also nearly impossible to wake Alex up in the morning for school. His teacher describes him as being sleepy as well as hyperactive in class. All of this leaves his parents exhausted and very overwhelmed (2:40). 

Due to his snoring, practitioners treated him for sleep apnea by removing his adenoids and tonsils. This helped his seizures and snoring, but the restlessness and night wakings continued (6:45). The speaker emphasizes a comprehensive approach to sleep issues that identifies co-occurring conditions, prioritizes behavioral strategies wherever possible, and uses medications sparingly. She reiterates the benefits of routines for people with autism (10:15)

Sleep, emotional regulation, behavior, and core symptoms

All daily functioning is improved when we sleep better; it’s like “hitting the reset button,” especially for emotion regulation. Malow outlines fMRI studies that show increased amygdala activation (fear and anxiety) and decreased connectivity between different parts of the brain after sleep deprivation (12:13). Similarly, in a study with more than 2,500 kids, those getting less than seven hours of sleep per night had higher severity scores for social communication and emotion regulation (15:15). The presenter asserts the significant relationship between sleep and behavior and suggests that if we improve sleep, daytime behaviors will also improve (16:35). 

Parent training for insomnia supports

In 2009, Malow published the Sleep Habits Questionnaire for Children With Autism Spectrum Disorders to help parents and caregivers manage sleep issues in autistic children (17:20). The questionnaire assesses components of successful sleep and daytime habits including exercise, abundant light, limited caffeine, limited naps, and selective bedroom use (using the bedroom only for sleeping) (19:18). The speaker describes the interaction of homeostatic and circadian rhythms throughout the day and emphasizes the importance of having the proper bedtime. For example, in Alex’s case study, 8 pm may be too early for his body to enter sleep mode, so she suggests pushing it back half an hour (21:00). 

Sleep resistance and night waking

For many autistic children, the “crying it out” method doesn’t work because the child doesn’t understand what is going on. If a child needs company to fall asleep, Malow suggests the rocking chair method, where you sit in the rocking chair with your back to the child, moving closer to the door each night until you have left the room (23:00). 

The first step in minimizing night waking is to help the child fall asleep on their own – “A child who can fall asleep on their own can go back to sleep on their own.’. It’s essential to respond quickly to distress and comfort and reassure but avoid over responding – be “brief and boring” (25:00). “Bedtime passes” can also be used as a ticket for a hug or class of water during the night. In this case, the child can use the pass or turn it in in the morning for a reward. This gives the child control over the situation and comfort, knowing they can have help if needed (26:30).

Malow notes that all of these learning materials are available for free at https://www.autismspeaks.org/tool-kit/strategies-improve-sleep-children-autism

Sleep education multicenter trials

Malow outlines a two-phased study in parents of autistic children with sleep onset delay at least 3 nights/week. In phase 1, parents were given sleep education, a pamphlet, or no intervention. In phase 2, parents were randomized into either group or individualized classes with a trained community therapist (29:30). The therapist training portion includes a manual, videos, and weekly Zoom meetings for practice and support. Following training, therapists identify families who could benefit from the program, and after consent is given, baseline assessments are completed. Therapists meet virtually to discuss challenging cases and billing issues (34:44). 

Preliminary results show that therapists achieved fidelity goals during training sessions and that parents achieved high scores in understanding, comfort, and implementation. Sleep patterns and core symptoms improved, and parents were delighted with the training overall (32:55). 

This training is now available in TN, NH, VT, GA, and CO. For more information, email the research team at [email protected]

Medications

Malow expresses her reservations about medications due to the many side effects and unknown long-term implications. However, sometimes they are necessary. They can help manage parental overwhelm initially, but it’s good to wean off slowly as behavioral habits are adopted. Gabapentin, alpha-adrenergic agonists (clonidine), and mirtazapine are common medications that have been studied, but most others have not (36:30).

 The presenter summarizes her talk, reiterating the prevalence of sleep problems in autism and their impact on daily functioning. She emphasizes that once the root cause is identified, sleep problems are highly treatable, especially with behavioral strategies. Personalized, family-centered interventions are the most effective  (37:45). Malow touches on future research directions before the Q&A (39:00). 

Originally published March 18, 2025