Autistic child awake from midnight to 5 am

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My three year old autistic son is having real difficulties sleeping at the moment. We started Melatonin 3mls which worked brilliantly for around a month as long as he didn't nap in the day. Now he nods off with the medication around 8.30pm but wakes again around midnight. He is then awake until around 5 am despite being tired and agitated. We have to wake him by 8 am for the school run/work/nursery. It's as if he wants to sleep but he is too fidgety, singing and moving around which disturbs our other children. He then falls asleep for a couple of hours in the afternoon when it is impossible to keep him awake. His behaviour in the day has gone into meltdown overdrive due to lack of sleep and grumpiness which isn't helped by him being non verbal. Every few nights he manages to sleep until around 3 am at which point he is totally hyperactive when he wakes, waking up the whole family.

We are waiting to find out if we can increase the dose of Melatonin but any suggestions would be brilliant. We're both totally knackered as is our son and as he is starting at specialist autism unit in September, we need him sleeping better as he will be picked up in a minibus at 8.30 am every day. Thank you in advance.

Forgot to say that on the days he manages to sleep until 3am, he is then up for the day when he wakes. He can't be left in his room due to shouting, screaming, throwing things etc so we have to take him downstairs. He still makes enough noise to wake our other children and prevents the other parent sleeping.

Porr you. That sounds horrendous! When is your med review?

We have a paediatric appt in towards the end of June but have left a message with the secretary regarding possibly increasing his dose. I'm wondering if he may be able to get a sedative type medication instead to keep him asleep.

You poor thing. DS2 was exactly the same when he was the same age as your DS.

DS2s Paed told us at that age that DS2 could have a max of 10mg melatonin. What dosage are the tablets you're giving?

I assume you are keeping a sleep diary, have a set routine in place (can you follow it agin at 3am?), visual schedule, done a social story on sleep and why he needs it, tried relaxation techniques etc? Failing all that, have you tried the wake to sleep method? I know I am just throwing stuff out there, but just don't want to suggest things you have already tried!

You way need slow release melatonin if he isn't in it already, which will help keep him asleep rather than make him go to sleep. A sedative won't really help as that's just to get him to sleep.

Ooh thank you. I've been keeping a diary. Haven't tried a visual schedule but sounds like a good idea, what would I put on it? His understanding of language is severely delayed, he is just about understanding his name plus one word, eg, "yikes, shoes". New words eg 'garden' have to be taught alongside the object/photo. He's never sat and listened to a story but does like certain book illustrations eg gruffalo. I must admit his bedtime routine isn't as consistent as it could be due to us being so tired and the demands of our other children so this is something I need to get sorted. I'll write out a set timetabled bedtime routine and follow it rigidly. What is the wake to sleep technique?

I was wondering about the slow release melatonin. Problem is he won't swallow tablets and I don't think you can crush them though I may be wrong. The consultant said they rarely prescribe slow release for under fives.

Oh and we are on 3 mgs on melatonin syrup which were told is a low starting dose. Think it is 1 mg per 1 ml.

Ah well the syrup is just to get them to sleep, you really need slow release, which sadly can only be given tablet form.

DS2 was roughly 3/4 when he started on tablets, took a few goes for him to swallow them, luckily he is like a sponge with any liquids, milkshakes especially, and we bought Nesquick Magic straws. We put the tablets in his mouth, made him take a few big mouthfuls of milk and did it that way. He is now 9 and a pro at taking tablets.

We had identical problems with our ds. In the end we increased melatonin and doctor prescribed small dose of a medication called Alimemazine. The melatonin got him off to sleep and the Alimemazine kept him asleep until about 5.30, sixish. You only need v small dose of Alimemazine - ds who is 14, has 1ml.

I know lots of people dislike using medication, but we were on our knees with the sleeplessness. It was also having a massive effect on ds too.

No more advice re sleep than given.

As an aside have you ever looked a to pace space rooms? They are safe for children who are up at night and may allow you to leave him when awake as long as he isn't a danger to himself.
Charities such as new life are usually very helpful in financial support towards the cost.

Ok so a visual schedule is one like this....

Argh! This...

You can add a social story in on how we need to stay in bed cos we need sleep etc so once he is in bed he needs to stay there.

I know of people, who, although it is a faff, repeat the routine at whatever time their child wakes to get them back to sleep. Ultimately it is less time than the child would be awake and running around anyway.

But since you already have a diary, the first thing I would do is I would nail down the routine, difficult I know with other children but you can put them all on it! Or stagger bedtimes.

Then use the wake to sleep method. Basically, he will have a sleep cycle. It is during the end of this sleep cycle that he will wake. If from your diary, you can see he will always wakes at midnight, go in half an hour earlier and rouse him lightly. Not completely awake, but enough to 'reset' the sleep cycle and see if this makes a difference. It will take a few nights, but hopefully it will get later and later each night.

Do ball this whilst waiting for the med review and hopefully that will help on top of your new routine. Also work on relaxation techniques during the days. You can then add them in to the routine.

Anyway these are just some idea!

Re the schedule as well, leave off the written part and just use pictures. If possible, even take a picture of him doing each stage. Then just say 'max, teeth now' point to the picture and walk him to the bathroom (for example). Have the schedule in a central easily accessible spot on the landing. Then each time walk back to the schedule, and do the next step. Eventually, slowly slowly! He will get into the habit of checking for himself what is next and hopefully go and do it. Maybe have two velcros trips and as each one is done move them across so he can keep track of where he is up to.

I've had success with weighted blankets for night time waking, always combined with slow release melatonin however.

I was having very similar waking times with ds. Ds was unable to swallow the slow release melatonin and I found giving it to him at bed time was making him go into a very deep sleep early then he was ready to start the day at 3am.

The paed told me to give him the melatonin when he woke instead, providing it was before 1am, which it mostly was if he hadn't had it at bedtime.

I was not happy to do this long term as it made him yawn a lot in the morning and a bit groggy in the day (even though the docs insist there would be no effects the next day). But it absolutely got us out of a real rut and we did that for 2-3 months.

He's still up at 4.45 ish most days and wakes in the night but will go back to sleep with a weighted blanket and me there.

Bloody hell, you poor thing. I have no advice sadly but just wanted to say hats off to you - it sounds like you are doing a sterling job.

This is so awful for all of you! have you tried white noise you can get this kind of thing on tube:
I tried it the other night for me (I have ASD) and I realised that when a very small noise woke me up, my brain would "hook up" onto the white noise (which I find relaxing) instead of waking up I drifted back to sleep. I don't think it would work when I am highly stressed though.
Also earplugs might help.

Thank you everyone for the sympathetic comments. We put back his bath until 9.30 last night, (after getting the older children to tire him out in the garden with his water table and climbing frame) and after 4 ml Melatonin at 10 pm he slept until 7 am!!! I'll also be making the bedtime schedule using photographs of him in the bath, having supper, lying in bed etc. Have also ordered him a star projector for his ceiling which apparently looks like the Milky Way so hopefully that should relax him at bedtime. Along with the white noise app.
Thank you so much, amazing how different you feel after a good sleep.x

Spoke to soon. Did everything the same but awake from 2 am. Now headbanging the floor in exhaustion (Ds not me although I feel like joining him).

Oh I'm so sorry. As I said above I've never been through this and I just can't imagine how hard this must be for you. That level of exhaustion must be absolutely debilitating.

If it's any consolation at all I remember reading "George and Sam" by Charlotte Moore and her two autistic sons were exactly the same but did grow out of it and are both now excellent sleepers. Not much help now I know.

Thinking of you and have my fingers crossed for you for tonight.

We went through a year of awful night waking. A weighted blanket and reward chart seem to have worked wonders. He still wakes at night but is comfortable enough/motivated to get his reward and stays put. Our problem now is that we have no idea how much sleep he's getting and consequently we're unprepared for these unexpected periods of exhaustion.

We give ds (he's 5) his melatonin at 9.30-any earlier and he's wide awake through the middle part of the night. He gets into bed at 8pm with his iPad and plays with it until 10pm when we take it off him and he will usually fall asleep soon after.

I know that good practice is to help children wind down to sleep but my ds needs to keep his brain buzzing until he's frankly exhausted (then the melatonin does the rest!).

Good luck-I hope you find what works for your ds and get a good night's rest soon.