Autism and Sleeping Problems -
Patterns and Disorders Explained
By Mark Mattei
Disclaimer – Nothing on this website is intended to be a substitute for professional medical advice, diagnosis, or treatment… Read More Here.
You don’t understand how strong a 3-year-old is until it is your job to stop them from slamming their head into their hardwood headboard. A 180-pound adult male against a 30-pound little girl sounds like an easy matchup, but somehow they manage to beat their head against the pillow you placed between them and their target 2 or 3 times before you successfully calm them down.
Why did this all happen? Because you told them it was time for bed.
To help pay for college, I worked directly with toddlers and young children with autism for nearly 6 years. While going to sleep may not be quite this difficult for all autistic people or their caregivers, it is a time of night that is troubling to so many people on the spectrum.
Before taking the job, I was already quite familiar with autistic people, especially children. My younger brother Thomas was diagnosed with Asperger’s Syndrome when he was a toddler, a condition that now falls under the umbrella diagnosis of autism spectrum disorder (ASD). His behaviors were pretty typical for his diagnosis at the time, he had delayed speech, social quirks, and obsessive tendencies.
His, in particular, was a maddening infatuation with Thomas the Tank Engine, to which the show’s theme song remains stuck in my head to this day.
Those unfamiliar with autism might think that these children are “unteachable” or “lack intelligence” but that could not be further from the truth. On the contrary, they are typically quite gifted, their minds are just wired differently than most people, so the way they acquire, process, and understand information is different to what many people would call “normal”.
This guide takes a researched journey to inform readers about what autism is, how it affects sleep, as well as some useful tools that autistic individuals and their parents can use to find better rest.
What is Autism and How Is It Diagnosed?
Autism Spectrum Disorder (ASD) is a neurodiverse developmental condition that influences both cognition and behavior. Like all people, those with ASD are unique, but there are some characteristics uniquely common to autistic people.
Diagnosis is often difficult for physicians as there is currently no physical test to obtain results, like a urine or blood sample. Rather, doctors have to look at both behavior and development to reach a diagnosis.
Autistic individuals often have
- atypical responses to sensory information,
- difficulty participating in social interaction,
- alternative ways of learning and processing,
- difficulty expressing and understanding language,
- and repeated fidgeting of flapping, among many others features.
Autistics are considered to be neurodiverse because their condition falls on the “spectrum”, with some needing more assistance than others. The challenges and strengths these individuals have will vary from person to person.
Asperger’s syndrome is a common type of autism and is considered by many professionals to be a higher functioning form of autism but has been considered part of the spectrum since 2013…
The causes of autism are not completely clear, though there are common considerations that most experts agree can factor into the causality, including, biology, environmental factors, and genetics. [1]
Sleep-Related Problems in the Autistic Community
“Sleep problems in ASD, are a prominent feature that have an impact on social interaction, day to day life, academic achievement, and have been correlated with increased maternal stress and parental sleep disruption.” Preeti A. Devnani, M.D. & Anaita U. Hegde, M.D. [2]
Many reports indicate that anywhere between 40% to 80% of children with autism are affected by sleep disturbances. [3][4] Two separate and smaller studies done by professionals at Vanderbilt University [5] and the University of Bergen [6] in Norway had similar findings in autistic adolescents and adults.
Compare this to the 20% to 40% of typically developing children who report experiencing some form of sleep disturbance. [3] This indicates that children with ASD are up to 60% more likely to have trouble sleeping.
These disturbances present themselves in a myriad of ways, including insomnia, sleep onset delays, shorter sleep duration, and many more.
Common Autistic Sleep Disorders
Insomnia
Insomnia, especially sleep onset insomnia, is quite common with people who are autistic. This is defined as the inability to stay or fall asleep.
“Thirty-nine children with ASD (66%) were identified with an insomnia…” — Sleep Research Society [3]
Parasomnia
These atypical occurrences that happen during rest are often caused by the nervous system. Examples of parasomnias include sleep paralysis, nightmares, and sleepwalking.
“The most significant finding is high prevalence (48%-60%) of parasomnia in ASD children, especially the Disorders of Partial Arousal…” — Clinical Medicine: Pediatrics [7]
Obstructive Sleep Apnea (OSA)
This is a respiratory condition that refers to disrupted breathing while sleeping. It can pull the sleeper out of a restful state, causing multiple mini awakenings during the night.
“In the study population of 6794 children with ASD ages 2 to 18 years, 543 children were identified with a diagnosis of OSA representing a point-prevalence of approximately 8% in the population.” — Sleep Research Society [8]
What Causes the Correlation Between Sleep and ASD?
The answer is not straightforward and the science is still ongoing. But the following is one theory that has shown up in multiple observations.
Evidence suggests that there is a link between melatonin production and sleep disturbances in autistics. A study performed by the Sleep Disorders Clinic indicates that “any impairment in the production of these neurotransmitters (melatonin) may disrupt sleep… In melatonin synthesis, the final enzyme encoded by the N-acetylserotonin O-methyltransferase gene demonstrated less activity in ASD children; therefore, implying lower levels of melatonin.“ [2] To put it in layman's terms, this suggests that melatonin production may be irregular in ASD individuals due to genetic activity.
Sleep Medication for Autistic People
“Our finding that 46% of children aged 4 to 10 years with sleep diagnoses were taking at least 1 medication for sleep suggests that medication use for sleep is common in the ASD population.” — American Academy of Pediatrics [4]
If autistic individuals have melatonin deficiency, one might think the answer is to simply supplement this with over the counter melatonin, but the issue is far more complex. As far helping autistic people to fall asleep, studies have shown that melatonin among other drugs has the potential to be effective in reducing sleep disturbances in up to 85% of users [9] , but newer research performed by the American Academy of Pediatrics suggests there are potential drawbacks to this treatment. It found that ASD participants taking melatonin as well as other medications “had worse daytime behavior and pediatric quality of life than children not taking sleep medications.” [4]
The authors of the study acknowledge to not fully understanding the causality between this data, that either increased behavior causes a higher sleep intolerance or if sleep deprivation causes heightened behaviors. More research is needed for a conclusive understanding of the relationship between melatonin production and supplementation for ASD individuals. This research does indicate, however, that there may be a more effective solution that benefits both rest and behavior.
The research performed by the American Academy of Pediatrics suggests “treatments that emphasize parent sleep education either alone or in combination with medications appear to be warranted.” [4]
This is exactly the type of approach that was performed in a Vanderbilt University study that found the 85% success rate with melatonin that was mentioned before. This observation paired parent training with melatonin supplementation, finding that 25% of participants had no more sleep problems and that 60% found measured improvements in their child's quality of rest.[9]
The outcomes of both of these separate studies suggest a greater emphasis on parent sleep education over medicines and supplementation but do indicate melatonin and other drugs could be useful.
There are other medications that can be used to help with sleep onset, like Mirtazapine which helps with ASD related anxiety. Drugs such as clonidine, quetiapine, and clonazepam could also be a bedtime benefit, but it advised to bring your questions to a doctor for any form of prescription or over the counter drugs.
How to Get an Autistic Child to Sleep
Getting any child go to sleep can be a struggle, but this struggle is often exacerbated when the person fighting against their rest doesn’t have the tools to accurately communicate with their caregivers about what they’re experiencing, feeling, or worried about. Meltdowns are common, especially close to bedtime when children are tired and worn down.
Routine and Hygiene for Autistic Sleepers
“Behavioral treatments, including those emphasizing a calming bedtime routine and soothing sleep environment, are also effective for other forms of insomnia, including those related to core deficits of ASD” — American Academy of Pediatrics [4]
Research shows that sleep hygiene plays a huge part in helping, not just someone with autism, but just about any anybody to fall asleep quicker and rest more soundly.
Let’s break it down.
Sleep Hygiene
“Due to deficits in communication skills, children with autism spectrum disorders may not readily understand the expectations of parents related to going to bed and falling asleep.”
According to an article published in Sleep Medicine Reviews, “Sleep hygiene is defined as a set of behavioral and environmental recommendations intended to promote healthy sleep.” [10]
The following list of tips and tricks is based on a Parent-Based Sleep Education Workshops in Autism Department of Neurology at Vanderbilt University. [11]
Nap Wisely
Many specialist and medical professionals disagree on exactly how long this should be, but most agree that day time snoozes should be earlier in the afternoon/morning and should be kept relatively short. Adults should snooze no longer than thirty minutes to an hour and a half, though younger children and toddlers can rest a bit longer.
“If your child isn't tired at bedtime, you might be fighting a losing battle. Try scaling back on any daytime naps.” — Mayo Clinic Staff [12]
Exercise to Help Influence Falling Asleep
Exercise is an effective tool to help get some energy out. ADHD and autism have a high correlation, so this can be especially beneficial for those who have these corresponding conditions.
“There has been more and more research in the last decade showing exercise can reduce insomnia.” — Kelly Glazer Baron, Ph.D. [13]
Avoid Stimulants Close to Bedtime
Substances like caffeine and nicotine can adversely affect the sleep/wake cycle. Scale back consumption of caffeinated beverages up to 6 hours before bedtime. The smaller the child the more adversely something like a soda may affect them.
While not targeted directly toward autism, a study performed on typically developed Australian children showed how adversely caffeine can affect both rest and behavior. It reported, “caffeine consumption is small by adult standards but has an effect on behavior and sleep in children. The effect on behavior is mediated by disrupted sleep, indicating that caffeine is a contributor to sleep problems and related behavior in children.” [14]
Have an Appropriate Bedtime Environment
This is especially important for people on the spectrum. Keeping a clean room that is both dark and cool enough is important for all people. ASD individuals need to also account for stimuli or distractions that can disrupt their rest at night, this might include toys on the ground or even sleeping with disruptive sounds nearby. Toy’s should be stored away and the bedroom should be kept orderly to help induce sleep.
“The bedroom should be dark, quiet and cool. As children with ASD might be particularly sensitive to noises and/or have sensory issues, the environment should be adapted to make sure your child is as comfortable as possible.” — Carin Lamm, M.D., Autism Speaks [15]
Sleep Routine
“Several items showed significant improvement on the Family Inventory of Sleep Habits with treatment, including those related to the (ASD)child engaging in relaxing, rather than stimulating activities before bedtime. Having a regular bedtime routine and not using electronic sleep aids (TV and videos) also showed improvement after treatment.” — Vanderbilt University, Department of Neurology [11]
This is actually part of sleep hygiene but it may be the most important part, especially for someone with autism. Many of these individuals love predictability, and using that to your advantage may help them get to bed.
According to the United Kingdom’s National Autistic Society, “routines can be a source of enjoyment for autistic people and a way of coping with everyday life.” [16] Using a visual chart/timetable, like the one illustrated above, could be of great benefit when it comes to bedtime.
When I worked with autistic children, autism, I noticed that it helped parents if they implemented a bedtime routine similar to the one listed below when putting their son or daughter to bed.
- After dinner, start the evening with a warm bath or shower
- Have them brush their teeth
- Use the potty
- Read a story
- Tell them goodnight, tucking them in before turning off the lights and leaving the room
If all goes right, they will hopefully fall right asleep. If this does not work the first few times, add one or two more steps to help them get ready.
Additional Tips and Tricks
Deep Pressure Simulation
This is a range of firm to gentle squeezing that is done with the hands or a massaging tool. This treatment helps relax the nervous system and has been used as a method of helping calm ASD individuals before bed.
Weighted Blanket
A weighted blanket provides some of the same relief as deep pressure stimulation. Added weight can act as a comforting embrace. These are typically filled with sand, glass beads, or some other finite substance that can provide extra pressure.
The size of this blanket should weigh no more than 5-10% of the users body weight. Many manufactures have advised that more than this can be potentially dangerous, especially for small children.
Comfort Object
This can be a blanket, stuffed animal, baby doll, or really any object that the child forms an emotional relationship with. This item is meant to provide a sense of security.
White Noise Machine
White noise can help autistic children who experience neurodiverse audio sensory stimulation. These can help cancel out or cover other noise. This can help them relax and facilitate falling asleep.
Light Therapy
A type of therapy where artificial light is used to help regulate the circadian rhythm. This has been used to treat both sleep and psychiatric disorders and has been recommended by some as an effective treatment for people on the spectrum.
Tips for ASD Adults
As an adult, my brother falls into the category of someone with ASD living many nights with sleep deprivation. Part of this has to do with his caffeine intake and playing video games until 4 in the morning. But I think there is more to it than that.
Like others his age, when he follows a strict bedtime routine (brushing his teeth, bathing, reading, etc.) and keeping good hygiene by having a clean and cool room, a made bed, and cutting out caffeine in the evenings, he finds it much easier to fall asleep. Hygiene and routine are a fundamental part to sleep health in general, and it is even more important for those on the spectrum.
Conclusion
When working with someone with autism, it is going to require a lot of work for everybody involved. Things often come slower, but most of the time, they do come. I know this from experience — bedtime was not always the easiest for my little brother, who would often meltdown in the hours leading up to bedtime.
It must have been a difficult time for him because it was hard for him to communicate his wants and needs. He didn’t speak until he was nearly 3 years old; a characteristic quite common to those on the spectrum.
After diligent work from my whole family, the bedtime routine came together and he began sleeping soundly. But the language took a little longer, but eventually, it did come.
One night after I tucked him into bed, he looked up at me and spoke his first words. “Good night,” he said as he rolled over and closed his eyes.
His first words are my wish to those both those on the spectrum as well as those who work with them. May you find quality rest and have a “good night.”
[1] Autism Information, HHS
[2] Autism and Sleep Disorders, National Center for Biotechnology Information
[3] Sleep Behaviors and Sleep Quality in Children with Autism Spectrum Disorders, National Center for Biotechnology Information
[4] Sleep Difficulties and Medications in Children With Autism Spectrum Disorders: A Registry Study, AAP News & Journals Gateway
[5] Characterizing Sleep in Adolescents and Adults with Autism Spectrum Disorders, National Center for Biotechnology Information
[6] Sleep Disturbances Inadolescents and Young Adults with Autism and Asperger Syndrome, Cite Seer X
[7] Prevalence of Parasomnia in Autistic Children with Sleep Disorders, National Center for Biotechnology Information
[8] 0787 Descriptive Epidemiology of Obstructive Sleep Apnea in Children with Autism Spectrum Disorder, Oxford Academic
[9] Melatonin for Insomnia in Children with Autism Spectrum Disorders., National Center for Biotechnology Information
[10] The Role of Sleep Hygiene in Promoting Public Health: A Review of Empirical Evidence, Sleep Medicine Reviews
[11] Parent-Based Sleep Education Workshops in Autism, National Center for Biotechnology Information
[12] Child Sleep: Put Preschool Bedtime Problems to Rest, Mayo Clinic
[13] The Healthiest Way to Improve Your Sleep: exercise, CNN Health
[14] The Relationship Between Caffeine, Sleep, and Behavior in Children., National Center for Biotechnology Information
[15] Sleep, Autism Speaks
[16] Obsessions, Repetitive Behaviour and Routines, National Autistic Society
Mark Mattei
Mark sleeps like it's his job, and we often have to remind him that it’s not. He likes to study sleep health, writing content, and producing videos on his findings. When he’s not, he’s likely writing the great American screenplay, growing out his beard, or spending time with his family.
