As Autistics, we have always had a very fragile relationship with sleeping - going to bed, falling asleep, staying asleep and getting up. It is a constant struggle that we have to manage every day.
According to The Sleep Foundation, many autistic people experience sleep problems, ranging from difficulty falling and staying asleep to insomnia. Sleep problems affect between 50% and 80% of autistic children and about half of autistic adolescents, which is higher than rates for typically developing youth. Nearly 80% of autistic adults experience sleep disturbances. This includes:
- Resisting bedtime: Autistic children may resist bedtime by refusing to get ready for bed or to stay in bed.
- Trouble falling asleep: Autistic adolescents and adults may find it takes longer to fall asleep when they first go to bed.
- Difficulty staying asleep: Waking up during the night and having trouble getting back to sleep on their own is common in autistic children. In some cases, children may remain awake for hours—talking, playing, or even screaming. Adults may also experience frequent wake-ups that compromise their sleep.
- Restless sleep: Some autistic children may move more than usual during sleep, which can disrupt sleep.
- Waking up very early: People with autism may wake up early in the morning and be unable to get back to sleep.
- Parasomnias: Unusual and unpleasant nighttime experiences—such as nightmares, night terrors, sleepwalking, and bedwetting—may occur in autistic children.
- Sleep disorders: People with autism may experience sleep disorders, including insomnia, obstructive sleep apnea, restless legs syndrome, and periodic limb movement disorder.
Why?
Dr Megan Anna Neff of Neurodivergent Insights created this concise infographic explaining the relationship between Autism and sleep:
- Autistics are more likely to have a circadian rhythm sleep-wake disorder (CRSWDs). Many Autistics have a mutation within the CLOCK gene, which impacts circadian rhythm.
- Autistic people are more likely to have a mutation in genes regulating melatonin resulting in a “flat melatonin curve.” Thus our bodies often do not feel tired or send the same level of tired cues at night, and we may feel sleepier during portions of the day/upon waking.
- On average, it takes autistics 11 minutes longer to fall asleep.
- Autistic people are more likely to experience insomnia which includes everything from difficulty falling asleep to night waking and early morning rising.
- Autistics are more likely to experience parasomnias, including sleep paralysis (waking but not being able to move), sleepwalking, and night terrors/sleep terrors.
- On average, Autistic people spend roughly 15% of their time asleep in REM (while neurotypicals, on average, get 25%). REM sleep is where we consolidate learning and memory and is important for a host of physical and mental health things.
- Repetitive behaviors & hyperactivity increase w/ poor sleep (which can make sleep more difficult).
(If you are interested, Neurodivergent Insights also sells their guide, The Neurodivergent Sleep Workbook as a digital download here.)
Ways to address the problem
The UK's National Autistic Society suggests an integrated approach to address potential sleep problems.
Explain sleep
Children can have difficulty understanding the need for sleep. A social story could be used to explain this. They can also be used to reassure your child that they are safe when sleeping/alone.
Visual supports such as flow charts could also be used to explain sleep or children’s books that provide the biological explanation for sleep.
Some children may find the transition from sleeping in their parent’s room to their own room by themselves difficult. This can be related to difficulty with change but also the need for reassurance around bedtime and sleeping. Coping with waking problems may require consistent reassurance on your part and a creative approach to your child’s needs.
Keep a sleep diary
Sleep diaries can be used to establish any unusual patterns of sleep and identify factors which may be influencing your child’s ability to sleep. If you are using other strategies to aid sleep, you will be able to track how effective they are. Sleep diaries are also useful because you can show them to professionals such as teachers, GPs or social workers, to give them a clearer idea of the impact sleep issues are having on your lives. For older children, a sleep diary could be useful to show them what their sleep patterns are like. They can then be used to establish incentives for staying in bed and trying to sleep.
Establish a reassuring routine
Establish a basic, ordered routine for the evening, which can be followed anywhere. Use visual timetables to make it easier to follow. There is some research to suggest exposure to bright lights from screens (TVs, computer, tablet, smart phone etc.) can inhibit the production of the sleep hormone Melatonin. You might, therefore want to reduce your child’s screen time before bed.
Make the bedroom more comfortable
Autistic people can have sensory differences, which make it harder to relax and go to sleep, as well as stay asleep. Their environment and surroundings can also play a role. It may help to:
- block out light using dark curtains or black-out blinds
- reduce noise using thick carpet, shutting doors fully, turning off appliances, and moving your child’s bed away from a wall with activity going on on the other side
- block out noises by letting your child use ear plugs or listen to music through headphones
- remove labels from bedding and night clothes, or try bedding and nightclothes made from other materials
- reduce smells coming into the room by closing the door fully, or by using scented oils that your child finds relaxing
- remove distractions, such as electronic devices near the bed and pictures on the wall (unless the person finds these relaxing), and consider a different colour on the walls
- use relaxation techniques such as having a bath, massage, quiet time or gentle exercise such as yoga, to help your child wind down before bedtime.
Diet
If food sensitivity/stomach discomfort is a problem, visit your GP or a dietitian for advice. We also suggest that you visit a dietitian before introducing any major dietary changes to check that your child still has a balanced diet. Limit sugary foods and fizzy drinks and other stimulants, especially near bedtime.
Bed Time Strategies
Living Autism offers these 10 strategies to help autistic children sleep better. While these aren’t 100% effective all the time, practicing these habits may help improve your nighttime (and early morning) struggles.
1. Eliminate household noises:
Most typically developing (TD) kids can easily block out ambient noise, especially when they are tired. For kids on the spectrum, household noises like the TV, music, the dishwasher, etc. can be over-stimulating or otherwise disturbing, making it impossible for them to fall asleep or even feel tired. As much as possible, try to limit your child’s exposure to household noises once they have gone to bed.
2. Reduce light exposure in the bedroom:
Visual stimuli can disturb your child and make it difficult to fall asleep. Keeping their bedroom dark will help limit visual stimulation and encourage the production of melatonin, a neurohormone that promotes sleep. Switch to black-out curtains if there are streetlights, traffic lights, or other outdoor light sources near your child’s bedroom windows.
3. Keep the bedroom cool:
Your child may not be able to tell you if they feel too cool or too warm, but sleep experts indicate that a cool bedroom promotes sound sleep. Optimal bedroom temperatures range from 18° – 19° C. If your child cannot tolerate bed clothes or covers, you will want to raise the heat a bit but no higher than around 24° C.
4. Assess fabrics on pajamas and bedding:
Many children with ASD find certain fabrics and clothing features to be extremely irritating. Make sure that your child’s PJs and bed linens are made of fabrics that at least do not cause discomfort and at best are soothing to your child. Be aware that seams, zippers, and buttons can also be irritating. If your child is non-verbal, you may need to do some investigative research with them using trial and error.
5. Establish a bedtime routine and create visual cues:
Work with your child to develop a soothing bedtime routine that you can stick to every night. Keep it simple, calming, and free from electronic screens. Create visual support for your child’s bedtime routine, for example:
- Take a bath
- Put on pajamas
- Use the bathroom
- Wash hands
- Brush teeth
- Read a book
- Go to sleep
6. Use a bedtime social story:
Create a social story explaining the importance of sleep and the cues people use to know when it’s time for sleep. Be sure to include pictures to support your story.
7. Try a weighted blanket:
While weighted blankets may not necessarily increase sleep time or decrease time spent falling asleep, the deep pressure touch provided by the weighted blanket can help to soothe your child and make the bedtime routine more appealing.
8. Use relaxation training:
If you suspect anxiety is the cause of your child’s sleep difficulties, incorporate some relaxation activities into the bedtime routine. These include:
- Deep breathing
- Muscle relaxation techniques
- Warm bath
- Soft music
- Audiobooks/stories
9. Consider melatonin therapy:
Research has shown that children with ASD improved their sleep when given melatonin in combination with oral instructions for parents on strategies to promote sleep. Melatonin has been shown to decrease the time spent falling asleep as well increase total sleep time.
10. Teach your child to sleep alone:
Many parents of children with autism fall into the habit of lying down with their kids to get them to sleep. While this can be a precious time to connect with your child, it reinforces their perceived need to have you near them in order to sleep. That means you are indispensable at bedtime as well as when your child awakens in the middle of the night. And that’s not good for either of you.
Using Melatonin to fall asleep
According to the study, Sleep, Growth, and Puberty After 2 Years of Prolonged-Release Melatonin in Children With Autism Spectrum Disorder, published in The Journal of the American Academy of Child and Adolescent Psychiatry in 2020, Melatonin is safe for long-term use in autistic children who have difficulty sleeping.
The study tracked the sleep hormone’s effects in autistic children over a two-year period. Melatonin has previously been suggested as a sleep aid for children on the spectrum, but this was the first study to systematically assess its long-term safety.
Melatonin levels typically drop during puberty, a fact that has raised concerns that taking it could delay or otherwise alter sexual maturation. “There has always been concern about what are the long-term consequences of taking it, because melatonin is a hormone, and we don’t normally think of hormones as things you can take without consequences,” according to Craig Canapari, director of the Pediatric Sleep Center at Yale New Haven Hospital, who was not involved in the study.
The study set about investigating these concerns, testing Melatonin use in 119 children aged 2 to 17 years, most with autism, over a 13-week trial period. It found that Melatonin improves sleep significantly better than a placebo. Eighty of the same children took melatonin for an additional 91 weeks — for a total of two years — with an option to periodically increase the dosage as needed. The improvements in sleep and quality of life persist long term, the researchers found. Some children experienced daytime fatigue and sleepiness, mainly at times when their doses increased.
However, the participants developed as would be expected, indicating that melatonin does not interfere with puberty.
“It really suggests that this is the sort of treatment that we should be thinking about when we’re seeing this incredibly common problem in children with autism,” says Jeremy Veenstra-VanderWeele, director of child and adolescent psychiatry at Columbia University, who was not involved in the study.
(Please don't now give your child Melatonin just because I said so - talk to a doctor first and let them prescribe the correct dosage.)
What to do if nothing works
If you are concerned about your child’s health or wellbeing in regard to their sleep, then you should contact your child’s doctor. They may choose to refer you to a hospital with a specialised sleep lab. If sleep problems are impacting on their learning or development, ask a occupational therapist for calming programmes or support options.
And, remember, as most of us parents of autistic children know, it can only get better.