Struggling With Sleep 🥱


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Jade is a mother of 2 from the UK and has been kind enough to share her experiences with us. We asked Jade about how she helps her autistic son (and herself!) sleep better at night. We hope you enjoy reading about Jade’s experiences as much as we do. The following blog is not advice and is for educational purposes only. Please contact your local health professional if you think you or your child are feeling unwell.

At 18mths old my son only slept about 6 hours a night, had only two words and would rarely interact with me.  I was also pregnant with my second son and really struggling with the lack of sleep. I didn’t know that my son was autistic (he was diagnosed at 2 and a half) and I didn’t know how best to support him.

I read lots of parenting advice on how to improve speech and language, how to get your children to sleep but none of it seemed to work. Everyone seemed to have different advice on how to get kids to sleep but I needed to find what worked for us.

It is very hard to be objective and consistent when you are sleep deprived. At age 2 my son had slept through the night (and by this I mean 10 pm-5 am) only a couple of times.  We had a long period when my son would wake at about 2 am and stay awake until 5 am.

Sleep when the baby sleeps is very good advice (not that I ever took it the first time around). Then when I had my second child they never slept at the same time!  Having sleep deprivation will affect you- your ability to be a good parent, friend or partner. Try to remember this, at least recognize you are exhausted and you can then at least explain your snappiness and forgetfulness.

My son would often have lots of energy at bedtime and want to be running around, but would be exhausted mid-afternoon. Therefore our biggest issue was getting him to sleep at the right time. Establishing a bedtime routine for my son was extremely difficult.

I had many nights sitting at the edge of his bed for hours just getting him to stay in bed as every two seconds he would want to jump out of bed to play. I didn’t understand that he was unable to switch off or understand what I expected of him.

Now 6 he is non-verbal and still struggles to understand verbal communication.  He also requires lots of processing time and consistency to understand something.  My husband and I would take turns to put him to bed but this made it harder for my son as he was having different routines every night as we were not being consistent.

As my son gets older sleep has become better, going to school and having more routine and structure has really helped.  He still goes to sleep late in comparison to most (9-10 pm) but he will now lay in bed from 8 pm calmly and rarely gets up in the night anymore.

I have found both my children very different.  My second child has generally slept well or at least consistently (except when teething or ill) whilst my eldest had terrible sleep for the first 3 years, made worse by a lack of predictability.

Sleep Issues & Autism

Sleep issues are common for people on the autistic spectrum, especially in young children.  Some common sleep issues include:

  • Difficulty falling asleep, this can take several hours.  It can be down to not being tired, having a heightened state of arousal, anxiety and/or excess energy.
  • Irregular sleep patterns, the natural sleep-wake cycle may be off-balance.
  • Not staying asleep and waking in the night.
  • Shorter sleep in total for example 6-8 hours a night rather than 11-12 for a toddler.

Melatonin is a hormone that is released by the brain to control your daily sleep and wake cycle. It is thought that patterns of melatonin secretion may be irregular in children on the autistic spectrum and it can be produced at the wrong time of day. Sometimes melatonin is prescribed by a doctor to help with sleep issues.

How To Get An Autistic Child To Sleep 

Every child is different so finding what works best for them will be some part trial and error. Some things will be individual for example my eldest is a very active child so we need to have an active day in order for him to sleep well at night. Other things are helpful for most children such as establishing a routine.  

Routine and structure are often important for children on the autistic spectrum.  Knowing and understanding a routine and what is expected of them creates a calmer environment.  Consistency is also really important because unexpected change can have a big impact on an anxious child. 

This is where my husband and I needed to work together as a team creating a set structure for the bedtime routine that we both stuck to. Yes, we had a few arguments and struggled at first (we were both very stressed and sleep-deprived which doesn’t help). Over time we found the routine that works and now it’s just part of our everyday.

I have had to learn to be patient and my husband has had to learn to be consistent but it has made a big difference for us all.

Tips to help children wind down before bedtime.

  • The smell of lavender is calming and is often found in bubble bath products.
  • Some autistic children may find a weighted blanket helpful to sleep with. Others will prefer a duvet and some prefer light blankets
  • Children with sensory processing issues may need certain materials/bedding to feel comfortable. Even the color of the wall and how busy the room is can impact a child’s ability to sleep.
  • Limit screen time especially in the hour before bed.

If your child is struggling to sleep at night it may be useful to try a sleep diary to look at naps over a couple of weeks. Are they in a routine of sleeping for long periods in the day? How long are they up in the night? What time have you started the bedtime routine and what time did they go to sleep? 

This was helpful for me to see if there were any triggers that made going to sleep worse (such as TV just before bed/daddy coming in and getting the children all excited just as they were falling asleep). It also helped me to see what the best time of day for naps was for my son (not that I had much control over this).

Our Sleep Routine

Over time we have come up with the sleep routine that works for our family.  The main thing is the consistency of routine, the boys both know what is expected and when. We use visual aids to support the boys through the routine.

The bedtime routine starts downstairs where we watch the end of CBeebies bedtime hour on TV, this is the start to winding down for bed. At the end of the bedtime story the TV goes off and it is time for the kids to go to bed.  We do have lots of bedtime stories recorded so if we want to start the bedtime routine at 6.30 rather than 7 we can do that. 

Then we go upstairs where there are no screens (iPads / TV) they are all downstairs and no longer available. Having clear rules like this is helpful as the kids know what the boundaries are.

Next, it is bath time and getting into their pajamas. Then the boys have a cup of milk and a small snack such as an oat bar, followed by brushing teeth. This works well if kids wake up hungry in the night or haven’t eaten their dinner.

My favorite bit is next, bedtime story we sit together and read two books then it’s time to get into bed.

The key is sticking to the rules. Keep the routine the same. Remember it takes a long time for some kids to catch onto a routine, but you will get there eventually.  Now the kids are very familiar with the routine it is easier to vary it when necessary but you need a long period of consistency to establish it in the first place.

Managing Change

Life doesn’t often go to plan so on those days when something isn’t working you need to adapt the routine accordingly. For about a month my son decided he had to go to sleep in his chair rather than his bed.  After some stressful nights I let it go, we started to let him go to sleep in the chair then we moved him to the bed once he was asleep, it was just a phase and he is now back to the bed.

When a child is ill your routine will likely go out the window.  Children regularly get viruses and sickness but it always tends to be worse at night. The best way to get through this is support, my husband and I try to take shifts through the night when the kids are ill to make sure we both get some sleep. 

If you are alone with the kids see if there are friends/family who can help in the day so you can get some sleep/rest. If we don’t sleep it doesn’t help our kids. Thankfully towards the end of sick children often have longer sleeps to get through it I find it best to let them sleep as long as they need and get back to the routine as soon as they are better. 

Going on holiday and sleeping in a different bed will also be a big change for your bedtime routine.  However, it is easy to follow the same routine in a different place and using visuals that you use at home will provide familiarity. 

Using Visuals

My non-verbal son is able to fully understand what we are doing or where we are going and what he needs to do thanks to visual aids.

Struggling With Sleep 🥱

Communication is often something young children on the spectrum struggle with, even a child who speaks well will find comfort in the confirmation provided by using visuals. Visual aids can be more reliable than speech and are less open to interpretation. They provide a simple way to show your child what is happening now and what is going to happen next.

The first few times I used visuals with my son I felt like it was a waste of time and he didn’t understand.  I have learned over time that just because my son doesn’t respond to something doesn’t mean he hasn’t understood it.  Also that I needed to be patient (not my strong point).  Over time I have come to realize how reliant on visual confirmation my son is.

I strongly recommend a bedtime routine visual.  We have a laminated copy I can take with us wherever we are and a poster on the wall. You will also find it easier to show a child what is next rather than telling them what they have to do.

All children are different and not all autistic children will struggle with sleep.  I would recommend trying a routine and visuals for all children as this will help most.  Keep trying until you find the right solution and when you are struggling to talk to professionals who can help such as a Health Visitor or GP. 

Struggling With Sleep 🥱

Jade writes about autism on her blog The Autism Page. Jade is a full-time mom to her two boys aged 6 & 4.  After her eldest son was diagnosed with autism she began blogging to share information and resources to help other parents.  Jade lives with her husband and boys in the West Country, UK, between Bristol and Bath.

References

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