Autism Awareness: Sleep (and the lack thereof)

Sleep is one topic that most people seem to be aware of, in relation to Autism Awareness. Go to any Autism parenting site, Autism Support website or Autism magazine, and you will find people talking about how to get their child to sleep. Practitioners are all too aware that children with Autism will often not sleep, and will usually give you all sorts of advice as to how to help your child sleep.

We know that lack of sleep can affect our child’s behaviour and can impair their ability to control their emotions, as well as learn and concentrate. Did you know that inadequate amounts of sleep can also affect our immune systems and possibly increase inflammation? Not to mention the increased hunger with decreased sleep, which often leads to weight gain and obesity. Which completely explains why my blog is entitled Autism with a Large Dose of Chocolate…

Sleep problems vary with each individual. Some can’t get to sleep – tossing and turning while their brains are doing mental gymnastics. Others fall asleep exhausted, only to wake a few hours later and unable to go back to sleep for hours. Then there is the issue of sleep apnea which leads to poor quality sleep regardless of how many actual hours you’ve had. Not to mention vivid dreams or nightmares which leave you feeling exhausted and sometimes too scared to go back to sleep.

When my son was younger, he would fall asleep exhausted (finally) and be in a deep sleep for five hours. Then he would wake up and be awake for twelve hours, before repeating that cycle. His body was functioning on a 17 hour cycle while ours were trying very hard to catch up (not very successfully). Once we took him off gluten, his body readjusted and he was able to sleep at night, although he was often still getting up in the middle of the night. I remember one night where we were awoken by the sounds of smashing glass, as he thought it was fun to unstack the dishwasher by throwing the glasses on the hard tile floors. We came running out to the kitchen to see him walking over the broken glass – miraculously unscathed.

Even now he does not fall asleep until midnight or 1am – 11pm is an early night for him and usually means he’s coming down with something. We’ve tried any number of supplements, bedtime routines and tricks to get him to go to sleep, but nothing has worked. Thankfully, once he’s asleep, he stays that way, until we have to wake him for school in the morning. Occasionally he will wake up in the early hours of the morning, but we can always trace this back to a food or something else that has caused him to waken that early.

My oldest daughter (19) has the same issue. She does not find it easy to go to sleep, and can often be blearily awake at 3am, still trying to get to sleep. Her sleep is not refreshing so she will doze on and off until lunchtime, at which time she will drag herself out of bed to get a cup of coffee. This makes it very difficult for her when it comes to attending daytime events, as she is not usually fully awake until mid afternoon (and you don’t want to mess with a sleepy bear, trust me).

I realise there are some who think that a person’s individual sleep cycles should be respected, and that if it is part of your Autism then society should be able to adjust to this. As a parent however, it makes it difficult for me when my son can only attend school from 9am to 3pm and he naturally wouldn’t wake up until 10:30am or even later. It is hard for my husband to drag himself out of bed every morning after far too few hours of sleep, because his employer expects him to work business hours. Personally, I get really annoyed when I try to sleep in and our super efficient Postman rings the doorbell with a parcel!

When you have more than one child, they may have different sleep patterns, so you can’t always sleep in or have a nap when your ASD child does. Think of those early baby days where you were exhausted from night feedings and nappy changes. With Autism in the house, it eventually becomes a way of life, which for many parents will never end. Your body calls on its reserves to help it cope with the strain of not being able to recharge and repair at night, but eventually you wear down. Daily activities become harder, you ‘catch’ every little thing and it takes you ages to recover, and sometimes you don’t. Your energy levels become lower and lower, leading you to be less productive at work, and less capable of looking after your children.

Lack of sleep is a big issue for ASD parents, and I really think that most people aren’t aware enough of how much it affects our lives.