Autistic son wont sleep

[WhatAMum01]

We are on month three of my son waking at 2am and despite trying everything we can think of ,we cannot get him to go to sleep again until the next night.!hes severely autistic and aged 5,completely non verbal.,no understanding of instruction or of anything we say.its destroying everyones sleep in our home and is truly awful.he runs around screaming laughing and jumping on everything and anyone .has anyone any advice on getting him back to sleep?he takes melatonin x2 before bed to get him to sleep ,takes an hour to work but then he still awakens.

I’m sorry, that sounds awful. My own ds often wakes ridiculously early for the day (earliest has been 1:30 but typically it’s 3/4:15) and when it started, nearly two years ago, he would wake up, turn all the upstairs lights on and mess around until we took him downstairs. Thankfully after about 3 months that behaviour settled down though he continues to wake at stupid o’clock fairly regularly despite melatonin. He is not so severely affected as your ds and will watch the iPad or TV until a more reasonable hour. Dh and I just take turns getting up with him so the other can get some sleep and we go to bed earlier.

What do the paed or GP say? Have you tried Piriton to see if that makes him sleepy (the GP mentioned this to me but we’ve not yet tried it).

@openupmyeagereyes hi thanks for replying. I've not got back to gp as I've thought they have gave him melatonin what else can they do.funnnily enough I bought some piriton and also phengran again they help with getting to sleep but nothing for the waking .arghhh I didn't think it would be this hard,all of the time.

Have you tried the piriton when he wakes?

I would go back to the GP and say the melatonin isn’t cutting it.

You have my sympathies, I hope it gets easier for you.

You need to get some liquid melatonin. Is your ds under a paediatrician? Melatonin is usually prescribed if children have problems falling asleep and then again if they wake. We have had some success with it for my son with ASD. He has always fallen asleep well but wakes several times and up anytime from 4am. The melatonin has reduced night wakings and pushed back waking to 5/6ish. You have my sympathies, lack of sleep is the pits.

Sorry just saw he’s on melatonin. Could you not try another dose when he first wakes up?

@Jemimapuddleduk @openupmyeagereyes I try giving him melatonin or piriton but he just seems unable to wind down again.pead said theres a slow release melatonin but its tablet and he cant swallow. I separate and pour it in juice just now.i cant function with the lack of slepp

Have you heard of Bright Light Therapy, which is exposing child to sunshine in morning 8am onwards, playing outside in daylight in the morning? It is meant to have a knock on effect regulating sleep patterns increasing body's natural melatonin.
Weighted Blanket?
Change in diet - could he have a food intolerance
Counterintuitive - a nightlight so he isn't frightened when he wakes and less likely to seek company
sleeping in the day so he isn't so exhausted/wired...the less sleep he has the more impossible it will be for him to self regulate

sorry if you have tried all of these. My son did wake frequently at that age, but always went back to sleep, he co-slept till he was 8 when he woke but went to bed in his own room at bedtime with a story/cuddle. His sleep did settle. He napped in the day till he was nearly five if he got the chance. Apples and apple juice/orange juice made his sleep worse.

Other things i have heard people do is shift the sleep cycle forward, so putting child to bed later and later so they wake at 5am instead of 2am, over a period of time - as if you are in a different time zone. I'm not sure when he goes to sleep in the evening or if it is already really late when he drops off. would he sleep in the car in the day if you drove him around - just to give him the sleep he needs so you can reset things?

I'm not sure if it's in all areas, but we've just done a scope sleep programme, aimed at families with a disabled child. You do a general intro session, then you have a 1 to 1 worker who does a plan with you, and makes contact once a week.

Yikes123 started a really useful thread in 2015 about autism and sleep if you do a search on it in SN Children (sorry I'm no good at linking)
In fact there are quite a few threads on autism and sleep if you google Mumsnet autism and sleep. there is lots more info about melatonin

OP we have the slow release melatonin (Circadin 2mg) and we still have days where he’s up from 2/3am onwards. Of course it may work better for your ds, it seems to for some but not all.

This is the thread mentioned above

www.mumsnet.com/Talk/special_needs/2385685-Autistic-child-awake-from-midnight-to-5-am?pg=1&order=

I should add that my ds does not do this every day. This last week we have had 2 or 3 days where he’s been awake from 3 or 3:30am. Typically he’s awake between 4-5 at the moment. Definitely not (currently) as bad as your ds but still rubbish.

Thanks everyone. Tried weighted blankets night light co sleeping tiring him out all day,nothing works.from that thread however I have learned there is a medicine which you can ask the dr for it's a mild sedative
Will be speaking to pead about this at next appointment in two weeks.i am so tired it's not even possible that I'm functioning

I've also read a Stanford study that sleep apnea can cause autistic children to wake, and this can sometimes be related to tonsils or adenoids - basically the child isn't getting enough oxygen and then this will trigger waking. The less "quality" sleep the child gets the more hyperactive and out of control they get and the more dysregulated their sleep cycle.Treatments for the obstructed breathing (if that is an issue)will help the child to sleep more deeply. Could you mention this to the paed?

if you google mumsnet "obstructive apnoea" or "adenoids" there are lots of threads about the difference it made to sleep in very young childrenand unfortunately the time taken in some cases for the problem to be recognised or referred for surgery.

@Nettleskeins will definitely give it a mention to pead. Hes very vocal with noise and when asleep seems in a deep sleep without any breathing problems. such a guessing game. Currently awake while hes pulling my hair.what a life

Does he ever go back to sleep once awake OP, even just passed out on the sofa?

Ds has been awake since 3:20 today. We seem to alternate bad days with slightly better days at the moment.

I came across this today, probably not helpful for you but it may be for someone. I think we’ll try the sleep pass idea to try and keep him in bed longer and try to do some yoga stretches before bed.

www.autismspeaks.org/sites/default/files/2018-09/Sleep%20Quick%20Tips.pdf

Melatonin was horrible for my child. It made him sleep within the hour as well but would wake up middle of the night and hard to get back to sleep or he wakes dog awful early in the day. It was 4 for us. My theory is that maybe he gets in TOO deep of a sleep and then waking up early from being so well rested. We lowered the dose and if still happened. I just don’t think it works well for him. What we do instead is zero screen time, and zero sugars and processed foods. 12 hour wake time sometimes 13. Chamomile tea during bath time, bath includes lavender Epsom salts, and clay sometimes charcoal. LOTS of outside play and sunshine. If no sunshine, (it’s rainy like half the year here it feels like) we make sure we give vitamin d! Works well for us.

Melatonin only helps your body to lower its temp and become drowsy, to fall asleep. It doesn't effect the quality of sleep. All of us release melatonin in the evening as a signal to our brains to sleep.

@openupmyeagereyes @Aunaturalmama no my son never goes back to sleep once awake.i agree a unatural that he sleeps so deeply with the melatonin for those few hours that he feels subsequently well rested.i live in therainest city ever so outdoor play is limited, what vitamin d do you use pls? @openupmyeagereyes so sorry you're also going through this rough sleeping, its torture

Does he get outside in the mornings for an hour to play in the daylight?Even if it is raining/cold? (and did he over the summer months which is when Vitamin D production from sunlight happens in Northern Latitudes - ie UK and Ireland and Northern Europe/USA/Canada)

Vitamin D for children should be 10mcg a day (or 400iu) - the government advises supplementing all children from September to March - you can google - diet alone won't provide necessary Vit D unless your child lived on seal liver. Most fortified cereals still won't provide enough daily. You can buy Vitamin D supplements from most chemists and supermarkets but if he doesn't take tablets, perhaps the spray form? Formula milk contains it but if your child is not just consuming milk then levels can drop. Vitamin D deficiency in children is a growing problem with use of sunscreen and less outdoor play/exposure to outdoors. Sun through a window doesn't count btw. Children with olive or dark skins need more exposure to sunlight than fairer skins to get the vitamin d naturally in the summer months in northern latitudes.

NHS website has advice on Vitamin D for children. It explains it all. It doesn't mention sleep related issues, but Vitamin D or lack of it has been associated with many health problems. It sounds a small thing but it made such a difference to our children's health/sleep, sunshine or lack of it, (they got a lot of sunshine/outdoors as children) which we never realised was Vitamin D related until the older one had severe sleeping issues as a late teen, which we then found were related to Vitamin D deficiency, amongst other things.

HTH

I use Garden of Life My Kind Organic Vitamin D3 Spray for my son :) world of difference for us!