With World Autism Awareness Week fast approaching I’m going to be writing a bunch of articles intended to hopefully help other autistic children and their parents. I also hope it might help people who do not have knowledge or direct experience of people on the autism spectrum understand the condition and experience a little better. The first of these is a subject that we know really well. Trying to get our son to go to sleep and, hopefully, stay asleep.
Sleep is a common topic for all parents, especially those who still have young babies struggling to settle. Whether it takes weeks or months, we all go through those first stages when children are still getting into a routine and keeping us up all hours. The big difference for parents of autistic children is that those sleep problems can last for years, sometimes into adulthood.
This can also become very stressful for parents of an autistic child with sleep issues. If your child isn’t sleeping then not only does their daytime behaviour become even more challenging, you’re attempting to help them having been awake much of the night yourself.
There are many reasons people with autism struggle with sleep but the most common one is hormonal. Everyone naturally produces a hormone called melatonin. This hormone is produced by the brain’s pineal gland and is integral to maintaining the body’s circadian rhythm; the 24 hr clock that dictates when we should fall asleep and wake up. When a person is tired and about to sleep, a surge of melatonin is sent to the brain to send the person off to sleep. Melatonin levels remain higher while the person is asleep and these levels then drop when the person wakes up in the morning. The hormone helps us to maintain healthy sleep patterns.
Autistic people still produce melatonin in their bodies but commonly are unable to naturally regulate it as a non-autistic person would. This means that despite being very tired, they may still struggle to drop off to sleep and are much more likely to re-awaken once they do drop off.
One way to combat this is by taking synthetic melatonin tablets at bedtime. This can replicate the effects of natural melatonin and help the person drop off to sleep. There are a few different sorts of melatonin medication and doctors will prescribe the one (or a combination) that they feel best fits the situation. It’s important to note that melatonin is not a ‘sleeping tablet’ or ‘sedative’. It’s a synthetic hormone.
In our experience, melatonin has been essential in helping Morgan function properly during the day. Before he was taking it his sleep was wildly erratic and this impacted his waking hours quite severely. His dose is regularly adjusted but there’s one thing that you can’t do much about and that’s ‘tolerance’.
Tolerance is the body’s diminished response to any drug that is used repeatedly because the body adapts to the continued presence of that drug. Melatonin is no different and after a while, the dose is not sufficient to have the desired effect anymore. Continuing to increase the dose is both ineffective and can be dangerous which is why regular users of melatonin have to spend periods of time without the drug so that their body can lose its tolerance. I would describe these times as ‘not very fun’.
Darkness and Seclusion
With such a sensitive sleep situation, children with ASD can easily be disturbed by external stimuli such as stray sounds, movement and light. Once this happens it is very unlikely that they will be unable to drop back off again and so begins another sleepless night.
One way to help avoid this situation is to minimise the potential for those disruptions to happen. One way to achieve this is with a decent blackout curtain or blinds. Both are decent options with their own drawbacks. If you get the right curtains, they can be hung just like any other curtains but often with the downside of being free-moving enough to potentially allow more light in through the sides.
Blinds are often a bit trickier to install but tend to be more snug and let less light in at the side. Premium options can also have side runners to cut extraneous light down to absolutely zero.
But what if the visual disturbances are coming from inside the room? We had the issue of the fact that Morgan shared a room with his older brother who liked to read using a torch once the light was off. The torch was visible from Morgan’s bed (on the bunk below) and this would sometimes risk waking him up.
The solution we found worked best for us was a bed tent. A bed tent is a fold-out capsule that totally encapsulates the mattress and anything on top to create a cosy, closed-off environment for total exclusion of all other light in the room. It sounds a little claustrophobic but I’ve dropped off in there a few times and it’s surprisingly cosy.
Being of quite thin material, the bed tent doesn’t keep out any sound but it’s very good at keeping Morgan in a dark, cosy environment that is unlikely to be disturbed. It also folds down to a small package that can be taken on holiday or used while camping. We got ours (like the one below) from Privacy Pop.
Playtime and Wind Down
Often when taking Morgan to bed he would still be in a state of excitement or not really seem ready to sleep. This is partially due to having a brother and sister who are quite bouncy and who would keep him excited up until the point he went to bed. Obviously, it then took time to wind him down to a point where he could settle himself off to sleep. If this period of excitement continued beyond the usual point at which the melatonin usually kicked in it often had the effect of negating the melatonin altogether.
The way we remedied this was to introduce a period of calm play before the point at which he would have his melatonin and start trying to sleep. This would start an hour before sleep-time and comprise a quiet activity that Morgan could do without the hustle and noise of his brother and sister. Sometimes this was a quiet crafty exercise like Aquabeads or colouring. Sometime we would play a boardgame. Our favourites are the games produced by Orchard as they are simple and can be completed in a short amount of time.
We found this left Morgan in a much better state to then approach bedtime. He often ended play sessions earlier than required to voluntarily curl up in bed ready for a bedtime story.
For a lot reading this, this will be obvious but it’s worth mentioning anyway. Children on the autism spectrum rely on familiarity and routine in order to feel calm and safe. Through recognisable patterns of activity and regularly recurring schedules, autistic children are able to ground themselves on something familiar. This sense of calm is essential for getting an ASD child to sleep.
One of the biggest upheavals we’ve had to Morgan’s sleep is if anything interferes with that schedule. There’s slightly more flexibility now than perhaps there used to be but small things can really upset the whole bedtime applecart and lead to aggression and anxiety. A good example is the time we thought it would be nice to read the bedtime story downstairs so that the other children could listen at the same time. This was fine until Morgan realised this meant there would be no story upstairs as usual. The story was missing, the pattern was ruined and the calm feeling was gone and this triggered a meltdown. The trigger can often be something that seems unimportant but to the autistic child it all forms part of a routine that is essential.
Avoiding Blue Light
This one was initially having quite a big effect on Morgan’s ability to sleep. Most modern devices that have a screen (televisions, phones, tablets, etc), are also emitting light on a specific frequency that can be particularly disruptive to feeling sleepy and dropping off to sleep. This is known as ‘blue light’. Blue light can affect anyone irrespective of their neurology but as a child who makes frequent use of his iPad (something that is reasonably common in ASD circles) this was really relevant to Morgan. Some research has shown that blue light can actually interfere with the natural production of melatonin.
The change was simple. We began stopping any and all device usage after dinner for all the children. This gave them ample opportunity in the post-school period to use their tablets, etc but as soon as dinner was ready they went away for the evening. Combined with the pre-bed wind down this has had a very positive effect on Morgan getting to sleep without upset.
Many areas have services dedicated to helping people with ASD and other spectrum conditions that can affect sleep. These often provide courses and guidance on further techniques that might be used. Our local one is the Nansa Sleep Service.
So that’s it generally. I’m sure there may be other remedies but these are the ones we’ve tried. Sleep is still a very challenging situation. Although Morgan now goes to sleep very well, keeping him asleep until morning remains quite challenging but it’s something we’ll keep working on together. Thanks for reading this, I admit it’s quite long but hopefully there’s some useful insights in there for people to use as a springboard.