April is autism awareness month
Day 24: Sleep
Research has estimated that between 40% to 80% of children and young adults with autism have trouble sleeping.
The answer to this is likely to be different for every person.
As a baby Dylan willingly gave up his daytime nap at 2 years old. He didn’t seem to miss them at all, unlike us, we were gutted!
By this age Dylan was also not settling at night. We would spend hours after a very quiet and relaxing bedtime routine lying on his bedroom floor to prevent him getting out of bed and running up and down the hall. He would often still be awake at 10pm, not being naughty; just unable to switch off.
This progressed after Josh was born and then also when Grace came along. Dylan now aged 3 would still be up at midnight and would wake throughout the night. The lucky thing was we were up with Josh and Grace as babies anyway; for a long time this masked the additional needs that Dylan had throughout the night.
Sleep problems can be divided into four main categories:
1- Settling problems or difficulty going to sleep
At night-time Dylan will lie in bed singing and giggling to himself. Sometimes softly humming, sometimes shrieking and cackling to himself.
Bed is generally a happy place for him; he rarely cries or becomes upset at being on his own. In fact during the day he will take himself off to his room for a hum and a giggle, away from the bustle of daytime life. Sometimes these noises can be very loud though.
As an example, when we were away on holiday a few years ago the chatty couple in the apartment opposite approached us at breakfast one morning – they were very concerned at the local wildlife being so close to the hotel complex, telling us that they could hear a wolf howling into the early hours of the morning. They were so concerned and very surprised that we hadn’t heard it as it was so loud! It was only a few minutes later that they heard Dylan happily howling at the breakfast table that they then realised that their local ‘wolf’ was Dylan. The couple only said hello once or twice to us after that.
Mark and I were horrified and embarrassed at the time (it was quite early in our autism journey) – now we find it hilarious.
These days Dylan will settle between midnight and 2am. He is quieter than he used to be. We have to gently shush him if he becomes too noisy, if we loudly SHUSH him he will echo this loudly back to us over and over again; Almost arguing with our request for a bit of quiet. However one little sshhhush and he often will quiet down a bit.
2- Waking problems, or waking repeatedly during the night
Once asleep Dylan will often wake in the night, I don’t wake before him but hear him once he has stirred, I’m not sure if he gets up for the toilet and struggles to settle back down or if he has had enough sleep and wants to wake now. This can happen from about 5am onwards.
Thankfully with the onset of puberty Dylan is getting up a bit later with him sometimes needing a lot of coercion even to get up at 8am, but the very late bedtimes remains.
When Dylan is awake in the night he needs supervision as he does on the day. Not appearing to realise or mind that the house is asleep he will get up and play some music or when he was younger one of his favourite things to do in the night was to get up and run the taps in the bathroom, or stand silently next to us like a possessed child in a scary film – it’s not clear why but it explains why I feel like I often sleep with one eye open!
3- ‘Social cueing’ problems, not making the connection between the family going to bed and the need to sleep
Dylan has a very established bedtime routine, hot chocolate, long soak in the bath, pyjamas, bed, snuggle time, everybody sleep. He enjoys his bedtime routine but just doesn’t get the snuggle down bit
4- sensory issues
“Sleep was not a secure place. Sleep was a place where darkness ate you alive. Sleep was a place without colour or light. In the darkness you could not see your reflection. You couldn’t get ‘lost’ in sleep. Sleep just came and stole you beyond your control. Anything that robbed me of total control was no friend of mine.”
Somebody somewhere, Donna Williams
It is highly probable that sensory needs impinge on Dylan’s ability to settle and get himself back to sleep after waking in the night.
The constant noise and flicking of his beloved drinking straw fills the darkness of his room. In the past we have tried lamps, settling down music on low, white noise, windows open, windows closed, weighted blankets, wedged pillows. None of it worked. Dylan just has to burn himself out to exhaustion almost before he can sleep. As long as we can keep him safe and reasonably quiet so as not to disturb Josh and Grace he’ll get there.
Medications have been suggested by professionals to aid Dylan’s sleep, particularly when his night time shenanigans were affecting Josh and Graces sleeping patterns.
We have strongly resisted this.
Medical interventions can be habit-forming and they don’t treat the root cause of the problem.
Melatonin supplements are only available on prescription in the UK.
Some foods are rich in melatonin such as rice, sweetcorn and tomatoes, but current research is not clear whether a melatonin-rich diet could be effective in helping children to sleep.
Dylan eats a bowl full of tomatoes on our Wednesdays out at Pizza Hut; he doesn’t sleep any better those nights so don’t hold much faith in the melatonin diet!
The only time Dylan really sleeps is when he is poorly.
In fact being non-verbal the only indicator of Dylan ever being unwell is that he will sleep, it’s ironic that sleep being the one thing we crave every night, when it finally comes all we want is Dylan to feel better even though that means he’ll happily be awake all night again – Typical!