Autism and sleep

[CookiezndCream]

Hi there

I'm just reaching out to hear from other people's experiences with children with autism and their sleep.

My little girl hasn't been diagnosed yet, she's awaiting a referral for an assessment and she may not have it either way.

She is nearly 3. She wakes for on average 4 hours solidly every night, say 6/7 nights in a row then will oddly have one night where she sleeps through, then straight back to waking again.
The nights can be very distressing. She headbangs, we have a padded headboard , but still sometimes the force at which she bangs with can result in her screaming. She's frustrated, thrashes about, throws head back, stims / hand flaps, giggles then screams. This goes on for hours if it's a particularly stressful night. Sometimes she may not be as distressed,but she will still wake for the solid period and sit up in bed, banging her head and hand flapping ( that is a good night). It seems that she is in a trancelike state when she is doing this. Is this normal??

She was prescribed melatonin about 4 months ago. I have found it doesn't seem to make any difference. She will still as a general rule, wake for 4 hours, sometimes more.

Last night was a bad night. I don't normally lay with her the whole time as a rule, but I did last night and ended up coming away 4 am as was so tired and just needed to try get sleep.

We have an older daughter who sleeps well,but will occasionally wake if my youngest starts banging against the door.

It's all very stressful and I guess I feel very alone. I haven't heard from the paediatrician at all since medicine prescribed. We don't use it anymore. I'm going to ring her for advice.

Is this just something I have to accept, will it get worse? She's started preschool now and I just want to help her sleep better before actual school as I know it impacts her day to day life.

Would be really interested to hear other people's experiences and thoughts.

Many thanks in advance!!!!

Have you tried increasing the melatonin? If that doesn’t work there are other medications you can try. You could also ask for a referral to a sleep clinic and/or look in to a SafeSpace bed or similar.

Hi @Thatsnotmycar , no I haven't. I'm going to ask the paediatrician ( if I can get hold of them) this week about this.
I'm not really aware of other medications. / hopefully the paediatrician will help me!
Thank you
Xx

Usually the next one to try is Promethazine or Alimemazine. Often used in addition to melatonin.

Hi

My ds pretty similar sleeps max through the night 3 nights in a row if we're lucky. We give him 2 out of the 3 melatonin tablets that he's allowed, leaves the other one if he wakes up before 2 am to give to him. Unfortunately he always wakes up 3/4am. I tried to get a review of his meds but sleep sister told me it was max he could get. I've also referred him to sleep scotland (not sure where you are there maybe something similiar) that's an 18 week wait list at least.
Have you also tried a weighted blanket?

My ds was same 2 years ago. He had sleep issues and used to stay awake for hours. We tried melatonin, recommended by our paediatrician, but it didn't work. It made him aggressive, hyper and more awake.

He is now 5 and sleeps much better. The things that worked for us were: Omega 3, good dinner (nourshing food) and cutting down sugar. We also made sure his bedroom is not too warm.

watching with interest - sounds so similar to our DD (3yo)

I have no idea what the 'right' thing is to do when she's up. Take her into our bed / downstairs / leave her / give her a screen if it soothes her... feel like I'm probably making it worse by doing a combination of these but it's just so rough. Feel your pain.. also with DD she looks exhausted all the time, feel like the lack of sleep is the worst thing with her (signficant) difficulties in other areas,lack of communication etc.

Melatonin at the bginning of night didn't help us, currently trying to get advice on giving it in the middle of the night

@Ahna65 i agree. On the nights my son gets a more decent rest he fares much better in so many ways, like most people when they have rest. Trying to work out the magic formula to the sleep puzzle I’m convinced it exists just haven’t found it yet.

can concur with @coffeeNpie thst a decent meal helps need to try the omega but he’s 3 so don’t know how to get him to have that

Hi there @Ahna65 , I'm so sorry I didn't reply sooner.
I hope you're OK and surviving!!

So yes, melatonin didn't really help my little girl either, when given at the beginning of the night.
The paediatrian said to give it when she wakes up , as long as not after 4 am. She said was absolutely fine to do it. We got liquid melatonin prescribed as well as it was such a faff crushing up the tablets and trying to hide them in a yoghurt, just before bed and half the time she would spit it out!

I'm not saying it's been a miracle worker, bit overall, things have definitely improved. Some nights she is now sleeping through. I try not give her a nap in the day. And bed is roughly 7.30-8 ish.

When she does wake, I usually give her the melatonin and to be honest she can still be awake for 2-3 hours , but it's never been longer whereas it used to be 5-6 hours on a bad night.
I think it definitely helps, just not dramatically for us.
Also it's 2mg we give her. I don't really want to up the dose ( I'd have to ask the paediatrian). But she is improving as a general rule.

It's so hard!!
I went through that phase of do.i leave her to cry? Didn't work. Or do I take her in with me, again didn't work.

We've always stayed upstairs with her just to enforce that bed time is upstairs.
In the end, I usually go calm her, give her a bottle either with medicine or not. Then I go back to my bed and wait 🙈
If she settles, brilliant, but she doesn't usually and starts banging the door or headboard, so that's when I usually go back in and lay with her for a while ( couple hours usually ) until she goes off.

It's been long journey to get to this point and maybe I've become a bit soft , I don't know!

But my partner went in the other night and put her back to bed, no bottle, just quite strict and she went back to sleep!! Was a pure fluke I'm saying as we've had 2 years of this and never worked before!!

I really hope you find a solution. The paediatrian said to me that they always nearly improve on their sleep and she hardly ever sees older children who are awake for that long. So that gave me hope.... and it has on the whole ,improved for us.

Is your little one awaiting a diagnosis?
We have been referred and will be about 1.5 years.

Hi @CookiezndCream yeah it’s awful isn’t it. Been up since 0230 and the same the night before last - luckily an ok ish one in the middle but honestly in zombie mode

i asked about giving melatonin in the night when wakes but was told not to as could make the rhythm worse or something. But interesting you had different advice

I often try leaving her and typically for an hour or two she’s happy enough just super loud, chatting , laughing etc, then it invariably descends into a meltdown and we end up bringing her into our room or living room, also to avoid waking her sister if possible. We aren’t super consistent which probably doesn’t help

@Authenticity2020 @coffeeNpie interesting re the omega 3 - I put a ton of flax seed in her breakfast which I think is high in it. Mostly bc the rest of her meals are just not balanced at all - I also grind a multivitamin in there, Brazil nuts, etc

solidarity to all of you, it feels so daunting that the sleep issues may be kinda long term

@Ahna65 it’s hard to be super consistent though when a lot of times we parents are in survival mode and just trying to do our best. I get a lot of kickback for not implementing a strict routine but I have tried several times. Within a week he falls behind with sleep and if I don’t let him sleep in and catch up or have a longer nap, which throws schedule out, then he gets rundown and falls ill. And that makes me feel worse because I can see that by day 4 or 5 that the routine is too much. Ultimately if his body can’t sleep till whenever, if whatever factors haven’t been met, he won’t just go to sleep. He will be up until he’s not. And then I either force him out of bed tired miserable and running
his immunity down and mood out the window, or I relax it… and then of course we’re back to square one.
now it doesn’t bother me and while he’s at preschool it’s not the end of the world but I don’t know how this is going to play out when he’s at actual school and needs to be there on time daily or he’ll be missing out.
in the meantime I’m just trying to get him as much sleep as I can. Goodness knows if that’s right or wrong

Getting my 4yo to sleep is so difficult. He just won’t settle. It takes ages and just takes up the whole evening. I keep thinking if he would just lie still for 10 minute he’d doze off but it’s constant wriggling, moving, light on / light off, bouncing in the bed, pulling my hair. Just got him down from climbing on the toilet cistern to play with the bathroom light pull. Then he never wants to wake up on a morning and I feel like I’m torturing him.

@SachiLars it’s so hard isn’t it. I sympathise. And then waking them when they’re so peaceful and finally at that stillness they so desperately need. Torture does feel like the right word. Does your four year old nap? How many hours sleep does he get?

SachiLars Have you thought about a safe space bed or similar to keep DS safe?

@Authenticity2020 no naps for years! He’d never sleep on a night. A good night he’d get 10 hours but it’s really erratic.

@JustKeepBuilding never looked into one of those. Thanks for the suggestion.

We are having some success with Slenyto, which is a very slow-releasing melatonin tablet developed for autistic kids.

We have never had a problem with DD going to sleep, but like OP, staying asleep was the big problem. She was just wired when she woke, singing shouting scripting from around 2.30/3am until she exhausted herself 2-3 hours later. I had to stay with her every night telling her over and over to lay down and go to sleep to get her back off or she would've happily got up for the day at 3am. Before we mastered this we were being asked to get her from nursery constantly for her being exhausted and disruptive etc.

We had tried standard melatonin tablets and then liquid melatonin up to 6ml - we also tried splitting it into two doses for wake ups, but like someone else here, she woke up after 2am so too late for another dose.

These new tablets are really tiny - we have the 5mg ones and they have to go down whole to work. We are hiding it in thick yoghurt at the moment and it's goin ok. I think she's getting wise to it - she eats it very gingerly - but only a couple of cock ups so far where she's noticed it and crunched it (that releases the melatonin straight away).

She is still waking in the night most nights I would say (I think actually she is waking needing a wee then doing it in her nappy and then is upset about it, but that's another story), but she is going back much quicker, sometimes immediately.

I don't know why it wasn't offered first - I'm assuming it's probably expensive but worth asking your paediatrician/doc about.

My daughter was and still sometimes is the same. What melatonin do you actually have? One is an instant hit when crushed / chewed. If she can swallow one whole (they’re very tiny) then it drip feeds it throughout the night. Often out DD has it and wakes up at 4.45. Other times she can be awake for hours but we definitely have more good nights now than not. She takes Slynytol. I sympathise with you as it’s the absolute worst and puts pressure on every aspect of your life. Hang in there x