Autism sleeping issues
If you have a child or loved one on the autism spectrum, you’ll most likely be familiar with some of the autism sleeping issues that can rear their heads when it comes to bedtime routines.
For us, our son was a pretty good sleeper in his first few months, and like most newborns, would sleep a good portion of the day as well as nights. From what we can recall, Andre first started having some problems with getting off to sleep at nights around the 1.5-2year mark.
At that stage he was still in a cot at nights, usually just happy being handed a bottle of milk once down, drinking it himself then rolling over to sleep.
Once he started getting older, he did start taking notice of things around his room a bit more once in his cot, and eventually, formed a bad habit of taking a couple of his toy cars to bed-since his cars go everywhere with him, as discussed in previous posts.
Over time these items have changed almost daily, but we’ve learned to limit it to 2 items, as one common cause for Andre to wake, was dropping a toy on the floor under his bed in his sleep, then waking up freaking out because he couldn’t see it.
Time keeps on ticking..ticking…
By the age of 24 months, our son was taking an average of 1 to 1.5 hours to get to sleep once in bed.
It wasn’t that he was going to bed ‘too early’ for his age, as was usually around the 6:45-7pm mark, he just simply seemed to have a lot of trouble completely relaxing himself enough to induce sleep.
He could look dead tired lying on his bed, drinking his milk, meanwhile his legs would be quietly kicking up and down, his hands would fidget constantly too, so it was usually pretty easy to predict that he wouldn’t likely be asleep anytime quickly.
Once he did eventually sleep, he would then usually wake up anywhere between 2 to 5 times over the course of the night, before then rising to start all over again by 5am at the latest.
Naturally, we initially thought he must simply not be burning up enough energy during the day, so we would, and still do, take him to playgrounds, parks, beaches (when we could get to the coast), anywhere, anything, just trying to actively engage with our son, keep him active and burn up his energy.
We’d then always ensure he toned it down for the last 1.5 hours before bedtime, try to limit any screen time, then read him stories in bed whilst he drank his milk. Yet the issues continued!
Andre had regular visits to doctors (especially in his 1st year when he picked up almost every illness out there!), all his developmental checks, immunisations etc, and although some delays were being noticed with speech in particular, we were under the impression that our son was just a bit of a late bloomer.
A glimmer of hope
Since we’d initially been told that issues such as ASD weren’t able to be diagnosed until usually over the age of 3, we figured we’d cross that bridge if and when we came to it.
After continuing on with his average of 1 to 1.5 hours to get sleep each night for around 6 months, Andre seemed to suddenly find a sweet spot with it, and somehow miraculously just started sleeping through the night.
Sadly, this didn’t really reduce the amount of time spent awake before he drifted off, but my wife and I were finally, after over 2.5 years, able to sleep more than 2 hours consecutively.
The relief of that, is hard to describe in words.
Unfortunately this newfound bliss was rather short-lived, as just as we were getting over the worst bushfire season in Australia’s history, (Got as close to us as 2 suburbs away!), we were told the face masks we’d become accustomed to wearing everywhere (due to the thick smoke in the air), were now going to have to be continued, due to this new ‘Covid-19′ virus going around everywhere.
Along came the Raver
It was of course at this time, in early March of the crazy year that has been 2020, that we welcomed our second child into the world, our gorgeous daughter Ava.
The old saying of something “Throwing a spanner in the works” doesn’t come close to describing the effect the arrival of our sweet little Ava had on our son.
Our daughter quickly earned the nickname of ‘Ava the raver’ due to her flat out refusal a lot of the time, to go to sleep. She just seemed to want to party all night.
Nights became very long once again, with the added pressure that once one child woke up and started crying, the other would likely hear it and also be awake in no time at all-doubling the ‘workload’ so to speak.
Those with a loved one on the spectrum might be familiar with one of our son’s slight obsessions, which are his routines.
Andre likes practically everything done in a certain way, at the same time, every day. The slightest adjustment away from his routines can and often is cause for major meltdowns and aggressive tantrums.
With the arrival of his sister, Andre was suddenly forced to share mum, dad, the pets, and just his life in general with this new little person who he didn’t know, which practically turned all routines completely upside down.
Back to square one
Within even the first few days of our daughter arriving on the scene in our home, our son was instantly back to waking up multiple times per night, wanting milk, crying until we went in to him and so on. As I write this, Andre is just on 3.5 years old, and Ava is now just on 9 months.
My wife and I have been consistently getting up at least 2, sometimes up to 4 times, per night, as although Ava does not appear to be affected by Autism thus far, she has been a horrible sleeper since her first day home.
Not a lot had changed until a few months back, when we got the official diagnosis of “Level 3-severely autistic.” for our son.
During our appointment with the paediatrician, she did ask about sleep issues and when we described our typical nightly routines, she recommended trying some medication at night to help bring his levels down a bit.
I had always been against wanting to give my children any kind of medications too young, as was worried about things like dependency as he got older, and the associated side effects.
However, after what we’d been going through every single night without fail, whilst still maintaining our full time jobs, and all the other usual life stuff, we were absolutely exhausted and ready to try almost anything that could provide some relief to not only Andre, but us as well.
Which medications are better?
As I write this, we are on to our second medication to aid our son with his sleep issues.
The first one we were prescribed was Clonidine which certainly did the trick well and truly in terms of getting Andre to sleep, we would give it to him around 6.30pm, and by 6:45pm he was pretty much out cold.
Of course there’s two sides to every story, and with medications, the downsides can be some of the side effects these drugs can include.
This particular one, we were told could cause things like nightmares or ‘night terrors’ in some cases, to which are thinking was pretty much along the lines of “well, many things say they’ll give you nightmares but don’t-i.e. eating chocolate before bedtime, I’m sure he’ll be okay.”
At the time, we were so exhausted that we were more than willing to try anything that could help us all get some well needed rest.
Unfortunately these side effects did manifest for our son, and after having no troubles on his first night on it, on his second, after passing out completely by 7pm, he awoke again at 8, 9, 10pm and then 2am.
Each time he woke up screaming, half the times he was awake, so had awoken from a scary dream judging by his reaction and body language (being non-verbal he of course can’t simply tell us it was a bad dream unfortunately).
The other half of the times he woke us screaming, it was more the ‘night terror’ stuff, which basically meant for us that it was like he was screaming as if awake, but when we went in, he’d be sitting upright, eyes still closed, so seemed a bit more like being trapped in that bad dream.
Aside from that, the Clonidine also just made Andre a little drowsy in mornings when he got up too.
Sometimes he would just sit upright in bed and scream for about 30 seconds straight, no matter what we did, then would just as quickly lie down and go back to sleep.
As it quickly became a nightly occurrence, it only took us about 4 nights to take him off it. We just couldn’t justify putting him through all that, just to get him to sleep a bit ‘better.’
When our next appointment with our paediatrician came up, we told her of our experiences on the clonidine, she reassured us that there were still plenty of other avenues in the medication department.
Because just helping our son initially get to sleep was the first issue we were trying to resolve, our Dr recommended trying Melatonin, as it can aid in getting them off to sleep, but doesn’t keep them asleep, doesn’t have the nasty side effects, or drowsiness next day we’d seen our son experience with the first one.
Our Dr advised us that this is something usually given once they’re a little older, but could see how much the situation was affecting the whole family.
She recommended we start with a relatively small dose, 30 minutes prior to bedtime, and only increase slightly if needed, if it stopped being effective at lower levels.
To this day, he is still only having 0.3mls and that is enough to do the trick each night so far.
I am very pleased to say that Melatonin was a HUGE success for us on the getting our son to sleep front.
From the very first time on it, right up until last night, and until the bottle runs out, it has put our son to sleep within around 45 mins.
Sometimes the time will be less, but very rarely more-I think an hour after having the medicine is the longest he’s lasted awake thus far.
He hasn’t woken up screaming since being on the Melatonin, and doesn’t seem to have any issues with drowsiness the next morning.
To that end, I have to say, out of the 2 medications we’ve tried, I cannot recommend Melatonin enough to anyone struggling with similar issues.
I of course have to point out that every child, and every person with ASD is different, so there’s no guarantee that your loved one will have the same experiences as our son did on the Clonidine, or the Melatonin.
There are loads of people out there who have found medications such as Clonidine very successful, and others who have not had any luck with melatonin, it’s just a matter of working through with your family and any extended networks or professionals you may be working with, what is the best fit for your loved ones and family.
What else has worked?
Because Autism covers side a wide range of various disorders or developmental issues, like anything, there won’t unfortunately be a “one size fits all” solution.
Aside from finding the right medication to assist with bringing our son’s state down to a level where he could sleep more easily, the other things we try to do is keep his room the ideal temperature-not too warm, a little cooler, but not freezing.
This is an easier one for us, with the air con unit in his room, we keep 1 nightlight on at all times for him in a corner of his room, that glows different colours all night, in subtle tones.
We have also always had a sound machine in his room at night (usually around $20 or so from most major retailers or toy stores), playing the white noise all night, which helps drown out other background noise from the rest of us in other rooms.
I highly recommend looking into sound machines if you haven’t already.
Andre also has an extra blanket on one side of his bed, because one of his rituals that he MUST have anytime he’s in bed, is holding on to the label of that extra blanket all night.
We absolutely must give him this tag when we put him to bed, or he will not settle, and a major outburst/breakdown will definitely be on the cards.
We read him 1 to 2 books every night once he’s in bed, then he’s good.
When he transferred to his first proper, single sized bed, we also got him a guard rail, that runs the majority of the length of the bed on one side, and basically was just put there to help him feel a bit more secure, and to assist him in not rolling out of bed onto the floor by accident.
Just that guard rail has actually been more helpful than we often think about, as it seems to have an affect on Andre that almost seems to make him think he’s all enclosed in there, like he was previously in a cot, because he’s only ever left his bed during nighttime about 4 or 5 times to date!
If this is something you are concerned about, I highly recommend these as a pretty inexpensive solution.
We do have a baby gate at his bedroom entrance, just to prevent him from walking around the house, getting himself into trouble/ waking his sister etc in the middle of the night and that seems to do the trick on keeping in his room.
We’re still at the point with both children where 5:30am is literally a sleep-in for us. It is very rare that it gets to 6am or even 5:30 and we’re not all already up.
That elusive ‘You’ time
Because on weekends these rising times can mean some long days for us as parents, my wife and I try to find time during the day, for instance when both children are happily playing with their toys in the lounge room, to give the other a break.
This will generally just consist of 30 minutes to an hour, depending on how the kids go, where one person will go to another part of the house, relax for a bit, watch some TV, check emails etc, whilst the other supervises the kids.
We then of course switch then the next opportunity comes up, just to create some time for ourselves amongst the relentlessness of 2 little ones who can both be quite a handful when they want to be.
I mention this part as I feel it is important to take any little slices of time you can for yourself, and if you are struggling with similar issues, and have this option available, I would certainly recommend it.
They’re always saying “Just make sure you take some time out to just be YOU” But many parents out there, like us, can’t help but scoff at that line, as it makes you kinda want to say something in response along the lines of “Really? ME time? Never heard of it, you obviously haven’t met my children.”
This is why I say I understand that the concept of taking time to yourself can seem silly when you’re so busy just trying to what’s best for your family, and keep up with the never ending demands and pressures.
But I do recommend just using those times when they are available to try to cut each other a little slack.
All I can say is that for us, just 30 minutes time out to ourselves can be like a godsend on the days when Andre is really full on.
We used to both sit around and supervise, play with the kids, feed the kids, etc, all day and night, then just started realising more and more that sometimes kids just don’t need both parents around all of the time.
Obviously we both still interact and play with our children, spend that quality time, but when it gets too much sometimes, as it often can with ASD, better management of those pockets of time can make quite a difference on one’s frustration and mental state.
Try and try again
So whatever sleep related issues may be present in your household, when dealing with someone on the autism spectrum, we can only recommend what has worked for us, and try to give our honest opinions to hopefully help guide anyone out there struggling with similar situations.
It’s just about finding that good balance that works, which for us has relied heavily on routine and preparation.
Having milk bottles ready to go for any wake ups throughout the night saves us some time when one of our kids does wake up-which helps because if left too long, they simply get louder and usually wake the other child.
Setting up the sleeping environment in a way that works for your loved one is important, as you want to make them as comfortable as possible, some like cooler, some like warmer temperatures.
We also invested in a weighted blanket, as well as a large weighted teddy, as had read many great things about how much they can help for those on the spectrum.
Unfortunately for us, that was another fail for our son, he hasn’t used the blanket for longer than about 10 seconds yet, and held the teddy once and didn’t like it-has been sitting in a corner ever since.
These types of products can vary greatly in price, ours was on a deal through an online retailer here in Australia, so we got both items, plus a carry bag for the blanket, for $125 (Australian).
Again I’ve read hundreds of reviews from people who love their weighted items, which can also be in the form of clothing items such as vests and shirts.
. The guys over at sensacalm.com have a great range of weighted items, including some awesome weighted blankets that you can have custom made how you want them-with over 50 various fabrics to choose from, as well as monogramming options to go with it.
When Autism related sleeping issues are a reality for your household, like many things with autism, for us it was certainly a matter of try, try, and try again, until we found a good mixture of things that worked well for our son, and everyone else in the family.
So It once again comes down to trying different things until you can find what will work well for your loved one, and for giving you and your family your well needed, and no doubt well-deserved, rest.
A few points to consider
Just a few take away points from this post we’d recommend considering for your autistic child:
- If your child (like ours) likes to take toys/items to bed, try to limit it to just 1 or 2 for less interruptions.
- Limit screen time-if possible I recommend no screens within the last hour before bed time.
- As ASD children can be very rigid with their daily routines, try to stick to the same routine that works for your child as much as you can-with our son, having some predictability about the day helps.
- Consider all side effects & talk to a professional about whether any medications could help your child.
- Try different approaches with the light, temperature and sounds in your child’s bedroom.
- Consider using baby gates and bed side rails to keep your child in one place and provide some safety.
- If possible, work with your partner to allow each other to take even ‘mini breaks’ to yourselves-even a few minutes to yourself can have a dramatic, positive effect on your own mental health.