We all know that a good night’s sleep keeps us from feeling grumpy the next day. The same is true for people on the autism spectrum: whether or not they can communicate how they're feeling, they need their rest as much as anyone. The trouble is, it can be hard for them to get it; research has estimated that between 40% to 80% of children and young adults with autism have trouble sleeping.
This can turn into a serious problem. Not only is an underslept child likely to be more hyperactive, inattentive or aggressive, children need a healthy sleep pattern to let their brains develop fully. Without enough rest, it's simply hard to learn and remember things. And since most sleep problems happen during infancy, they can be a real worry for parents concerned for their child's development - not to mention the fact that parents suffer without sleep too!
What are the common sleeping problems?
Your son or daughter may experience any of the following:
- Difficulty falling asleep
- Inconsistent/erratic sleep patterns
- Restlessness or poor sleep quality
- Getting less sleep than is normal for his/her age
- Waking early
- Waking frequently during the night
- Waking up screaming
- Day time sleepiness
- Trouble waking in the morning
- Sleeping in places other than his/her bed
- Meltdowns at bedtime
In other words, there's no one 'typical' sleep pattern for a child with autism - but what is fairly typical is a sleep pattern that leaves everyone feeling ragged.
How much sleep should my son or daughter be getting?
Children vary a bit, but as a rough guideline, they tend to need:
- Ages 1-3: 12-14 hours of sleep a night
- Ages 3-6: 10-12 hours of sleep a night
- Ages 7-12: 10-11 hours of sleep a night
Why do people with autism have such trouble sleeping?
The short answer is 'We're not sure yet, but scientists are working on it' - which is unfortunate, because if we had an easy explanation there might be some easier solutions. However, there is research going on, and there are some theories that look promising:
There's a hormone called melatonin which helps the body to regulate its sleep cycles. (Not to be confused with melanin, which is the one that causes skin tanning.) Typically melatonin levels rise when it's dark and dip in the daylight - ie., when your body is producing melatonin it knows it needs to sleep.
Some studies suggest that children with autism don't release melatonin at the right times of day. Instead, their melatonin levels are higher during the day and lower at night - which means, in effect, that their body's sleep cycle is nocturnal.
If your son or daughter is highly sensitive to certain things, it could be that it's just hard for him or her to relax. No one sleeps well in a bright, noisy room, and if your child is super-responsive to, say, light coming from the hallway or ordinary background sounds, then a bright, noisy room may be what he or she is experiencing.
Social communication difficulties
Being unable to communicate clearly makes everything in life more difficult. It could just be that there's something bothering your son or daughter - the bed's uncomfortable, the radiator's clicking - but they don't know how to tell you. There's also the fundamental problem that children with autism really don't get convention: you know that we sleep at night and wake during the daytime, but they may not have fully grasped that concept - or even if they have, they might not be able to spot the social cues that bedtime's on its way. For them, it might just be confusing: one minute everyone's up and doing, and the next (as far as they can understand), they're suddenly in bed. Making transitions from one thing to another is often difficult for children with autism, and that can include the transition from 'up' to 'bedtime'.
Rigid thoughts and behaviour patterns
A lot of children with autism feel they need a particular ritual or object every time they get into bed. If it's not possible to tell the same story or the one-and-only-beloved set of pyjamas are in the wash, your son or daughter may just feel that it's not proper bedtime.
Some children with autism have other medical conditions, and these can also affect sleep. High anxiety, ADHD and depression can make it hard to relax. Epilepsy can cause seizures in the night that wake a child up or, alternatively, seizures in the day that lead to sleepiness, a nap, and a disrupted bedtime. Gastroeosophageal reflex is very uncomfortable; it's rough trying to sleep through a burning sensation. If your son or daughter is on any medications, they might have side effects that can disrupt sleep as well.
If any of these sound likely, keep an eye on your son or daughter for a few nights - you might want to take notes to make sure you don't have to rely on your (probably sleep-deprived) memory. None of them may be the full explanation, but they're certainly a place to start.
How can I help my son or daughter sleep?
So, you've done your best to pinpoint the source of the problem; you may or may not feel like you've got a full explanation, but at least you're thinking about it. What do you do now?
Planning in advance
Sometimes you need to approach bedtime as a strategist, spying out the lay of the land and preparing from early on. Try these:
- Make sure the bedroom is as quiet and dark as possible. Put thick blackout curtains over the windows; put down carpets on floorboards that get regular use, oil the door hinges, and take out any toys that your son or daughter will stay up to play with. Make the layout of the room as simple as possible - no easily climbable furniture, for instance. Check all pyjamas, nighties and blankets for scratchy or uncomfortable bits, and make sure your detergent doesn't set off any skin sensitivities. You might also look into weighted blankets, which some children with autism find comforting. In general: get the bedroom as close as you can manage to an absolute chill-out zone.
- During the day, give your son or daughter plenty of exercise. Children with autism can be non-stop dynamos: run off as much of that energy as you can.
- If you can, try to cut out daytime naps. You're probably exhausted and it can be a strain on your energy (and sometimes your working capacity) to do without them, but if it buys you a decent night's sleep, you may just have to bite the bullet.
- Avoid giving food and drinks with caffeine or sugar before going to bed; they're just too energising. If your son or daughter is prone to constipation or wind, avoid those foods too. Make sure that whatever he or she eats isn't going to leave him or her feeling either hyper or uncomfortable.
The bedtime routine
Few things relax a child with autism more than a regular ritual, and bedtime is one of those situations where you can really make that work for everyone. If you have a visual schedule for the day, include the bedtime routine so your son or daughter knows what's coming. You can start it well before actual bedtime; in a way, the more preparation the better. Not only does this tackle the problem of not understanding that it's bedtime soon - a ritual can communicate better than an explanation - but it can be comforting in itself and help your son or daughter start to calm down and get ready to rest.
- Begin by turning off and taking away any hyper-exciting things at least an hour before bedtime, such as iPads, video games and television; a brightly-lit screen can encourage the body to think it's daytime. (This may sound like a surefire recipe for meltdown, so you need to establish that it's part of a routine so your son or daughter gets used to the idea. You might have to hold fast through some meltdowns in the first days, but if you can get it accepted as part of the ritual, it'll get easier.)
- As an alternative to screen time, you might want to set up some relaxation techniques. Gentle massage (if your child enjoys it), soothing music, gradually turning down the light levels: all can start to send the message that it's time to wind down.
- If your son or daughter is out of nappies, make sure he or she uses the toilet shortly before bedtime. That reduces the chances of waking up in the night.
- Use familiar and soothing activities: bath, story (it may be the same story for years, but that's okay), tucked up and goodnight. Make these all as nice as possible so your son or daughter starts to think of bedtime as something safe and cosy.
Will it work?
How much all these ideas help a child sleep depends heavily on just how many neurological, medical, sensory and just plain personality factors you're dealing with. Some kids are simply more hyper than others. If routines and planning don't produce magic results, don't worry, that's not a judgment on you - it just means you might need more help.
A good tactic is to keep a sleep diary. None of us are at our most brilliant when it's one in the morning and we're thinking, 'Please, please just go to sleep, I cannot cope with this!' Data is your friend here: make plain, factual notes: what you did, and what your son or daughter did. When you have several weeks' worth of these, you may be able to look back and identify patterns; those patterns can be a key that starts unlocking what does and doesn't work.
The sleep diary is a good thing to take along if you have to bring in the cavalry - which in this case means a GP, occupational therapist, social worker, teacher or other professional. Show them exactly what's been happening, and they can get to grips with the problem right away rather than asking for an observation period. It's also useful if you're applying for Disability Living Allowance as you can use it as evidence if you have to apply for funding for a night time carer.
There’s a useful template for sleep diaries (PDF) on the NHS website. You’ll probably want to adapt it a bit to fit around your particular boy or girl, but it’s a good place to start.
What if nothing works?
If you're reading this at all, there’s a good chance that you're an exhausted parent who has no trouble at all believing that you'll never get a night's sleep again. Try not to despair: these techniques can work, but if they don't, your next option is to apply for more targeted support. A behavioural analyst, for instance, can look into the root causes and work towards sorting out the problem.
If your son or daughter has a condition that's being prescribed for, you need to talk to your GP or specialist consultant: medication can have side-effects when it comes to sleep. You may need to do a bit of cost-benefit thinking and decide which is the most manageable.
Finally - should you try medication to promote sleep? For instance, should you give your child melatonin? The short answer is that you should talk to your doctor, be aware of potential side effects, and proceed with both research and caution.
And what about the parents?
When we talk about autism and sleep problems, we generally focus on the person with autism. The sleep problems start with them, of course, but they're not the only sleep-deprived person in the family: if one person is crashing around at midnight, nobody's going to get much shut-eye. This can put terrible strain on you - and possibly even your relationship with your neighbours, if the noise is bad enough. With serious sleep problems, this isn't just being 'tired': it can feel almost impossible to work and earn a living, and if you're worn out all the time it can be a lot harder to give the little alarm clock you call your son or daughter the affection and patience they really need.
It's not your son or daughter's fault, of course. But there's no point pretending it isn't hard on parents, and if you're going to keep parenting as well as you want to, you may need to find ways to deal with it until things settle down. Carer's support charities can sometimes arrange respite; if you're really stumbling through the days, try calling your local authority and to see if anyone can give you a break. Any family members your child is comfortable with can be roped in to give you the odd night's catch-up sleep (or to have sleep-deprived siblings over for a couple of nights, because more underslept children in the mix is the last thing anyone in the family needs).
The rule of thumb when it comes to maintaining your own health is probably 'Don't let the perfect be the enemy of the good.' If you're not in any state to run marathons and live on salad then that’s fine - but don't let that discourage you from doing a bit of half-hearted healthy eating and exercise from time to time if you can manage it.
Some day, this will end: your son or daughter will get better at sleeping. Till that day, approach the situation like you're planning a campaign, get as much help as you can, and look after yourself. Your son or daughter needs you functional, far more than he or she realises: being good to yourself, in this situation, is being a good parent.