Sleep Issues among Autistic Adults: A Review of Selected Literature

(1) Faculty of Social Work, University of Calgary
(2) Department of Psychology and Neuroscience, Dalhousie University

 

Contents

Introduction
What Happens When You Sleep?
Types of Sleep Issues
Sleep Disturbance Causes
Impacts
What Can Help Improve Sleep for Autistic People?
Strategies
A Caution
Research in Moving Forward…
Resources
References

 

Introduction

Sleep is a necessity of life. Some Autistic individuals experience sleep problems and/or sleep disorders which can have a negative impact on health and well-being^1-6. Sleep problems and sleep disorders are separate constructs; problems with sleeping can happen from time to time, but frequent and chronic problems may suggest a disorder. 

 

Meet Joel…

Joel is a 32-year-old Autistic man. He has had sleep challenges for many years. Most nights of the week, he has difficulty falling asleep and wakes up periodically. He also experiences depression and extreme anxiety. He is prescribed multiple medications for his mental health challenges, which he believes has added to his sleep difficulties. Joel often feels exhausted at times in the day, which he says has made it difficult to maintain a job. He has reached out to his doctor for help with sleeping, as this is impacting his quality of life, livelihood, and relationships in his family. Joel lives with his mother, who often wakes in the night due to Joel walking around the apartment. Joel isn’t sure how to address his sleep challenges.

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What Happens When You Sleep?

Let’s briefly look into the science of sleep. There are two types of sleep: rapid eye movement (REM) sleep (called this because there are bursts of eye movements under the eyelids) and non-REM sleep, both of which are linked to brain waves and neuronal activity⁷. During REM sleep, there is a lot of brain activity, but most body movements are shut down⁸, and learning and memory consolidation is believed to happen during REM sleep when eye movement and brain activity are highest⁹. Most dreams occur in REM sleep, which is thought to help filter and consolidate information from experiences during the day⁹. Of importance, it has been shown that, during REM sleep, certain brain regions differ for Autistic individuals compared to non-autistic individuals¹⁰.

During non-REM sleep, body movements are preserved so when people sleepwalk, they are generally in non-REM sleep. Non-REM sleep is divided into 3 stages that progress from light to deep sleep, with it becoming increasingly more difficult to wake someone or be woken by events in the environment (e.g., noise) as the person goes into deeper sleep⁸. It is still possible to dream during non-REM sleep¹¹. During non-REM sleep, body restoration is thought to take place. Given that REM and non-REM sleep are thought to have specific functions, it is important to get both types of sleep.

The way these stages of sleep alternate throughout the night is called a “ultradian cycle”. A person typically starts with non-REM sleep and then goes into REM sleep about 70-100 minutes after falling asleep, which then is often followed by a brief arousal, and then the cycle happens again. Most deep non-REM sleep happens during the first half of the sleep cycle, while most REM happens in the second half of the sleep cycle.

There are two broad systems that regulate sleep and being awake – circadian rhythm and homeostasis⁷. Circadian rhythm comprises the physical, mental, and behavioural changes that occur over a 24-hour cycle. This includes changes in hormones, body temperature, and rest/activity cycles¹². This rhythm helps to control timing and depth of sleep, including readiness for sleep, and waking in the morning even without an alarm. A person’s biological clock typically controls their circadian rhythm, and affects body temperature and the release of melatonin, which in turn heightens one’s sense of sleepiness. Early research has suggested that genes thought to be associated with circadian rhythm (or sleep-wake cycles) may be connected with melatonin production. Some studies have found that Autistic individuals have lower levels of melatonin and different melatonin secretion patterns than their non-autistic peers, but additional research is needed in this area¹³. Melatonin supplementation has been increasingly utilized in autism, but further research regarding melatonin and autism is needed to understand its effectiveness and potential risks¹⁴.

The second system that regulates sleep and wake is called homeostasis, which basically is an increasing drive for sleep the longer one is awake⁷. This system regulates the length and depth of sleep. There is some preliminary evidence that Autistic individuals may have differences in their homeostatic system¹⁵.

Examining how both the circadian and homeostatic systems may be uniquely experienced by an Autistic person is important. Consulting a healthcare provider who provides sleep intervention is important for those struggling to fall and stay asleep.

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Types of Sleep Issues

Researchers have increasingly found that Autistic adults indicate poorer sleep quality, compared to non-autistic adults^4,16. Across all sleep problems and sleep disorders, insomnia is reported to be the most common sleep challenge for Autistic individuals, including challenges going to sleep and night-time waking¹⁷. The American Academy of Sleep Medicine¹⁸ classifies sleep disorders, as follows.

Sleep Issue Classifications (as indicated in the International Classification of Sleep Disorders [ICSD-3-TR])18,19	Reported sleep problems, experiences or symptoms
Insomnia disorders	Difficulties going to sleep, duration or reduced total sleep, night waking, early waking, poorer quality of sleep, daytime sleepiness
Parasomnias	Nightmares, waking up screaming, enuresis (i.e. bedwetting, although minimally investigated relative to sleep issues in autism)
Central disorders of hypersomnolence	Kleine-Levin syndrome, hypersomnia, daytime sleepiness
Sleep-related breathing disorders	OSA (obstructive sleep apnea*), sleep disordered breathing
Sleep-related movement disorders	Restless leg syndrome, teeth grinding, leg cramps, rhythmic movement disorder
Circadian rhythm sleep-wake disorders	Difficulty going to sleep, long sleep latency, waking up early, irregular patterns of sleeping and waking, free-running sleep-wake rhythms (not linked to a 24-hour cycle/routine)
Other sleep disorders	Abnormal sleep patterns or events that do not meet other criteria listed above

*Obstructive sleep apnea (OSA) reflects instances of either partial or complete airway collapse with a decrease in oxygen saturation or arousal from sleep.²⁰

Researchers emphasize the need for more information about sleep and the diversities of autism.²¹ A study by Ballester and colleagues, for instance, focused on sleep problems in Autistic adults with intellectual disability⁴. Similar to studies of Autistic adults without intellectual disability, they found a similar trend of sleep differences in some Autistic individuals with intellectual disability, compared to non-autistic peers. However, they offer caution in drawing conclusions because of the lack of confirming studies to date.

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Sleep Disturbance Causes

Reasons for sleep problems among Autistic individuals are unclear. Perspectives about the causes of sleep disruption are diverse, and include the following:

 

Biological Causes:

Various issues or mechanisms may impact sleep. There may be biological or genetic differences in the brain or biochemistry¹⁷. Examples identified in the literature are: abnormalities in nerve-signalling chemicals called neurotransmitters that are meant to dampen cell activity in signalling relaxation or arousal^7,21, thus influencing circadian rhythm such as sleep-wake cycles and core body temperature rhythms¹⁷. Early research has suggested that genes thought to be associated with circadian rhythm (or sleep-wake cycles) may be connected with melatonin production. Circadian rhythm comprises physiologic or behavioural cycles on an approximately 24-hour cycle, with daily oscillations of hormones (melatonin, cortisol), core body temperature, rest-activity cycles, etc.¹². While these physiologic and biologic issues may influence sleep among Autistic individuals, there is limited research on circadian sleep-wake cycles in autism⁴.

Psychological, Mental Health and Functional Causes: Sleep issues such as insomnia have been linked with higher levels of anxiety^22,23. A study in children found an association of reduced sleep and increased autism-related traits in areas such as social communication, restrictive and repetitive behaviors, and mental health issues²⁴. It is unclear how these traits may be influenced by, or influence, sleep in Autistic adults due to limited studies in this area. A reviewer of this report noted the importance of more research on targeted topics such as rumination and sleep.

A link between poor sleep and mental health-related challenges suggests that sleep issues may impact, and be impacted by, psychologically-related issues (e.g., avoidance, increased attention on stresses) and/or sleep-related issues (e.g., insomnia, sleep beliefs, sleep control). Sleep-related anxiety may have a bearing on sleep²⁵. These areas of experience and challenge call for more support and again, increased research in this area².

 

Medical Causes:

Medical issues can affect sleep. For instance, gastrointestinal issues and seizures can contribute to waking and insomnia (https://adult-autism.health.harvard.edu/resources/sleep-problems/)²⁶ , as can mental health challenges, as described above. Medications to address depression, anxiety, ADHD, seizures, etc., can contribute to insomnia or daytime sleepiness. Sleep disorders, apart from insomnia, include apnea (which is relatively common in 2-6% of non-neurodivergent children)²⁷. A study reported more obstructive sleep apnea symptoms in Autistic children, compared with non-autistic controls.²⁸

 

An Interactional Approach:

Richdale and Schreck¹⁷ and other researchers suggest that an interaction of factors may influence sleep. The range of factors, as summarized above, need to be examined to better understand what is impeding one’s sleep, and then determine supports to address difficulties. Towards that end, care needs to be taken to ensure that supports and strategies fit for the individual.

 

Dr. Beth Ann Malow, MD, Professor of Neurology and Director of Vanderbilt University’s Sleep Division, offered a presentation on the topic of sleep in autism at ACT: Autism Community Training, entitled, “Solving Sleep Problems in Children with Autism” on June 20, 2014. Dr. Malow identified co-existing conditions that may have a bearing on sleep²⁷. According to Dr. Malow²⁷, we don’t yet know why there is such a high prevalence of sleep disturbance linked with autism; perhaps, she noted, there is overstimulation of the brain among Autistic individuals. Hyperarousal disorder may drive responses such as insomnia. Different theories are being tested.

 

Impacts

Poor sleep quantity and/or quality can decrease quality of life among Autistic adults^1,2,16. Examples of the impacts of poor sleep quality include lower mood, cognitive challenges, decreased ability to work or lower productivity at work, and relationship challenges ^4,16. While research exists, the influence of sleep problems on the daily life for Autistic adults has not been extensively studied¹⁷. But because sleep is important for everyday functioning^1,2,16, insufficient sleep may negatively affect daily life, including performance in school or employment.

In the above-noted presentation, Dr. Malow identified a key question: “Is sleep disturbance intrinsic to autism, or rather a result of co-existing issues?” This question is important because it may inform other questions such as, “Could we ease other challenging issues (e.g., seizures, medication use) by better managing sleep?”²⁷.

A toolkit on sleep by the National Institute of Health⁷ concludes, “A key focus of research is to understand the risks involved with being chronically sleep deprived and the relationship between sleep and disease. People who are chronically sleep deprived are more likely to be overweight, have strokes and cardiovascular disease, infections, and certain types of cancer than those who get enough sleep. Sleep disturbances are common among people with age-related neurological disorders such as Alzheimer’s disease and Parkinson’s disease. Many mysteries remain about the association between sleep and these health problems.” 

More focus on sleep may help quality of life and assist in addressing co-existing issues (e.g., seizures, anxiety, executive function). In other words, better sleep may help other challenges, particularly given the importance of sleep for day-to-day functioning.

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What Can Help Improve Sleep for Autistic People?

A review on care for sleep problems in Autistic individuals by Bellato and colleagues suggests that non-pharmacological approaches such as behavioral and environmental considerations should be the initial approach tried in addressing sleep issues²⁹. Examples of these strategies could include sleep education (teaching about healthy sleep practices—daily practices that contribute to a good night’s sleep), and therapeutic support (e.g., counselling or support to better understand and address the issues that may contribute to sleep challenges).

For someone experiencing sleep challenges, assessment by a health care professional with knowledge about sleep and autism, is important. Screening and monitoring should address what the sleep issue is about and how to incorporate what may be helpful. For instance, questions could include ‘what are the characteristics of one’s sleep challenges (e.g., longer time to go to sleep, night wakings, etc.)?’, and ‘What may be contributing to sleep challenges?’.

 

Subjective or objective measures and tools can be used to assess sleep. Researchers^4,17 identify the following:

Subjective Measures: Personal Observation Tools

1. Sleep Diaries: A sleep diary is a log to track when one falls asleep and wakes (including during the night), the quality of sleep, and whether one feels rested in the morning. Examples of sleep diaries are:
   • NSF-Sleep-Diary-Rev-2-2021.pdf (thensf.org)
   • Consensus Sleep Diary
2. Questionnaires: A questionnaire may be used to determine areas of sleep challenge or other related issues. An example of a sleep questionnaire is the Pittsburgh Sleep Quality Index (PSQ)³⁰. It addresses the following areas: subjective sleep quality, sleep latency, sleep duration, habitual sleep efficiency, sleep disturbances, use of sleep medication, and daytime dysfunction.

Objective Measures: External Observation Tools

1. Actigraphy: This involves monitoring during sleep by using a medical-grade commercially available wearable device about the size of a watch³¹.
2. Polysomnography: A polysomnogram or other related testing can help determine a sleep issue. A polysomnogram typically requires staying overnight in a sleep lab. It records multiple aspects of sleep such as brain waves, oxygen level in a person’s blood, heart rate and breathing during sleep, and eye and leg movement. It is considered the optimal approach to sleep measurement for sleep disorders such as sleep apnea²¹, but not for insomnia³².

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Strategies

Strategies for sleep challenges are not the focus of this brief and introductory review. To determine an approach for moving forward, consultation with a health care professional who has knowledge about sleep and autism is recommended.

Various resources suggest sleep-promoting habits and practices. As an example, in a resource entitled, “Taking Action” (https://sleep.hms.harvard.edu/education-training/public-education/sleep-and-health-education-program/sleep-health-education-68) , the Division of Sleep Medicine at Harvard University³³ offers the following practical tips (slightly adapted based on toolkit reviewer input): 

• “Identify and get rid of barriers to restful sleep such as caffeine, long naps, use of electronics at bedtime.
• Reduce time in bed awake to increase sleepiness. Do not use electronics while laying in bed.
• Stick to a sleep schedule, even on the weekends. Even if you get to bed late, waking up at the same time will keep you from getting off track.
• Keep your bedroom for sleeping and intimacy, do not work, watch TV, or eat in bed.
• Do not watch the clock to prevent anxiety or pressure to fall asleep.
• Avoid caffeine and alcohol close to bedtime.
• Avoid smoking, especially in the evening since nicotine often disturbs sleep.
• Avoid greasy or "heavy" foods close to bedtime, but ensure your eating habits are regulated so hunger does not disturb your sleep.
• Limit excessive fluid consumption close to bedtime to limit the need for nighttime bathroom trips.
• Get regular exercise to improve sleep quality and increase sleepiness.
• Limit noise distractions by sleeping in a well-insulated room or using earplugs or a white noise source.
• Keep your room dark and cool at night. Use light-blocking curtains or eye covers, if needed. Ideal temperature for sleep is between 15 - 19 degrees Celsius³⁴. (Note: A reviewer stated, “My experience is once an Autistic individual gets window blockers [e.g., blocking curtains, outdoor roller blinds], they leave them shut during the day, causing further issues. During the day, window dressings should be open to permit access to natural sunlight.”)
• Restrict your time in bed to only the amount of sleep you need to feel refreshed the next day and limit fragmented, shallow sleep. On average, adults require 7.5-8 hours of sleep each night. (Note: A reviewer indicated that sleep restriction can affect seizures. They strongly urged that sleep restriction should be considered only if recommended and monitored by a health care provider.)
• Reserve an hour before bedtime to wind down. Put away electronic devices and engage in relaxing, restful activities like reading or meditation.
• Do not take problems to bed. If you need time to process your thoughts or plan the next day, reserve [time well] beforehand to make a "worry list" or "To Do list" to address after a restful slumber. Keep a journal next to your bed so if you wake up with a worry or idea, you can write it down and tell yourself that you will focus on it in the morning. (Note: A reviewer indicated that telling oneself to focus on a worry or idea the next day must be recognized as a particular challenge for Autistic adults who may tend to ruminate on past social injuries or opportunities missed, or worry about future situations.)
• If you are having difficulty falling asleep, get out of bed. When you try harder to fall asleep, it often makes it more frustrating and difficult to do so. Leave the bedroom, and do something relaxing like reading in dim light. Return to bed only once you feel sleepy and wake up at your usual wake time.”

Note that the above list of sleep suggestions was developed for the general population. There is need for greater understanding about challenges and strategies specifically for Autistic individuals. Also, professional support may be helpful; for instance, therapy may be helpful in the case of excessive worry or rumination.

Dr. Penny Corkum at Dalhousie University has developed an app called the ABCs of SLEEPING^TM that is based on the following mnemonic (ABC-SLEEPING) for improved sleep amongst children (potentially with varying relevance to other age cohorts): Age-appropriate Bedtimes and waketimes with Consistency, Schedules, Location, Electronics (i.e., less use of electronics before sleep times), Exercise & diet, Positivity, Independence when falling asleep, Needs met during the day, all equals Great sleep.³⁵  This team is working on a modification of this app for adults with sleep problems. See details in https://betternightsbetterdays.ca/abc%E2%80%99s-sleeping.

 

A Brief Note about Treatment

Pharmacological Approaches: It is noted that pharmacological approaches should not be implemented before first trying behavioral approaches. Melatonin supplementation has been advocated for improving sleep for some (as noted earlier), but potential risks and cautions also have been identified³⁶. While some research suggests benefits of melatonin use for some sleep problems, more knowledge is needed about the interactional effects of melatonin or other sleep aids with brain development, functioning, and other health issues or medications. For instance, more research is required to examine the longer-term impacts of melatonin and to inform guidelines for its use³⁷.

Other approaches such as improved sleep-related practices are prioritized by multiple sources²⁹. One study indicates, “interventions that teach generalizable skills to assist Autistic adults in lowering their stress and sleeping better may help to improve their quality of life. Sleep quality interventions might involve behavioural interventions, educational programming, or pharmacological treatment” ^16(p.10). In another study, researchers conclude: “Given that sleep challenges (e.g., insomnia) are related to mental health, an intervention addressing both insomnia and mental health may be most useful in helping Autistic individuals improve their quality of life” ^2(p.954).

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A Caution

In a review of sleep and autism, researchers caution against only applying knowledge related to sleep in non-autistic populations, to Autistic individuals¹⁷. To that end, a thorough assessment of sleep by a health care professional with knowledge about sleep and autism is strongly recommended. One study, “highlights the important role of clinicians in evaluating individual characteristics (e.g., co-occurring symptoms), family dynamics, and the sleep environment when addressing sleep problems in autism” ^29(p.9).

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Research in Moving Forward…

Research is underway to advance knowledge about sleep and means to improve sleep. As an example, the Canadian Sleep Research Consortium is a national group of sleep researchers and clinicians who focus on sleep, with the aim of improved sleep. An important initiative in neurodevelopmental disability is being led by Dr. Penny Corkum at Dalhousie University, which is funded through the Kids Brain Health Network. This work aims to increase knowledge about sleep problems and their impacts, as well as develop evidence-informed sleep care and training. Resources are located on the Better Nights, Better Days portal: https://betternightsbetterdays.ca/sleep-across-lifespan .

 

Some Key Take Aways

• Sleep is a common challenge in autism across the lifespan.
• Less is known about sleep challenges among Autistic adults compared to Autistic children; however, sleep problems among Autistic children are noted to persist into adulthood.
• Health, mental health and sensory issues may be related to quantity and quality of sleep.
• Support from a health care professional with knowledge about sleep and autism is important.

 

Steps for Moving Forward

• Recognize the importance of sleep in supporting well-being.
• Recognize the bi-directional impacts of health, mental health, sensory issues and sleep.
• Consider sleep-improving practices.
• If you’re experiencing sleep challenges, seek an assessment from a health care professional with knowledge about sleep and autism.
• In addressing sleep challenges, ensure an evidence-informed approach that is tailored to one’s specific needs.
• Within the research community, increase the amount of research specifically addressing sleep and autism.

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Resources

Please Note: Not all these resources are autism-focused

Better Nights, Better Days, Dalhousie University : https://betternightsbetterdays.ca/sleep-across-lifespan

Canadian Sleep Research Consortium: https://www.researchsleep.ca/

Canadian Sleep Society

Brochure and eBook: https://css-scs.ca/resources/brochures

Insomnia Rounds: https://css-scs.ca/resources/insomnia

Healthcare Provider Map: https://css-scs.ca/research-training/researcher-map

Harvard University Resources:

Healthy Sleep Tips : Harvard Division of Sleep Medicine

Adult Autism Sleep Problems : https://adult-autism.health.harvard.edu/resources/sleep-problems/

National Sleep Foundation : https://www.sleepfoundation.org/

Sleep On It Canada: https://sleeponitcanada.ca/

Sleep Strategies for Teens with Autism Spectrum Disorder: A Parent’s Guide . May also be useful for adults. NB. This toolkit was developed by members of the Autism Speaks Autism Treatment Network / Autism Intervention Research Network on Physical Health. It was developed by Kelly Byars, Laura Gray, Whitney Loring, and Beth Malow, with input from the AS ATN Sleep Workgroup: https://vkc.vumc.org/assets/files/resources/sleepasdteens.pdf

Solving Sleep Problems in Children with ASD: A Series Presentation by Dr. Beth A. Malow Autism Community Training, June, 2014 : https://www.actcommunity.ca/education/videos/solving-sleep-problems-in-children-with-asd/

Spectrum News on Sleep Research: Cracking Autism’s Sleep Conundrum. By Chloe Williams, in The Transmitter, 25 Feb 2022 ; https://doi.org/10.53053/BUFH9768; accessed at https://www.thetransmitter.org/spectrum/cracking-autisms-sleep-conundrum/?fspec=1

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References

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