To beg for tips with getting my autistic son to sleep?!

[CoughyGoLightly]

Hoping for some tips and ideas of what to try next as my DS (6) is getting worse with not being able to wind down to sleep. He's never been a great sleeper (since birth 😴) but it's been manageable until recently.

In the last few months he's been getting really wired before bedtime and struggling to focus, stay in bed, and wind his brain down. He articulates himself his brain doesn't let him sleep. The tiredness is causing issues at school but the relentless bedtime routine is removing any down time we have as parents (his 3 y/o little brother still wakes in the night so we're on our knees tbh)

Has anyone tried anything with their autistic children they can recommend please? I've seen online things like massage recommended, alongside special sleep aids and other stuff. I don't mind investing the time or money in something so long as it has a chance of working and not being a marketing gimmick

Thanks in advance for any suggestions!

This is a good list. Definitely try them alongside getting that Paediatrician appt as soon as you can. We did try every single one (amazing to look at them in one place!) and that helped us get medication quickly because they believed we had really explored all the other options (and boy had we tried, I used to be very judgemental about any kind of child medication….. had to eat humble pie!)

Melatonin and a weighted blanket have made a massive difference to mine. We get it on prescription as my daughter is diagnosed but I know people have bought it easily from Europe.

My friends child has found audiobooks helpful. He doesn't really sleep any earlier but it does keep him in his bed and helps him relax.

I agree with melatonin, weighted blanket, magnesium but also want to add, something protein to eat before bed seems to help with staying asleep. Protein keeps us fuller for longer and unconscious hunger can wake us in the night. So a protein snack last thing is worth trying too.

Can you contact the pediatrician that diagnosed him? My GP wouldn't when take over the repeats so our pediatrician still prescribes ds melatonin

Put their bed in your bedroom. Worked well for my asd ds.

Melatonin was a game changer for our family.
Weighted blanket too.
Paediatrician told me that it either works or it doesn't and if it does, it works straight away.
Kids dose is up to 6mg, start low and increase if no response.

I found melatonin was the only thing that worked. Prescribed by a developmental paediatrician in our case. Was brilliant stuff. There are two different forms they look at depending on what the child needs, immediate release if a child has issues getting to sleep but can stay asleep once asleep, or slow release for ones that keep waking. It needs to be professionally ascertained.

@CoughyGoLightly my son is 5 and also awaiting an autism assessment. His sleep goes in cycles - we're in a good patch atm but at it's worst it's awful - think Up until 11pm or awake for the day at 2am, powers through until 9pm kind of awful.

But things that do help - no telly after about 6pm give or take half an hour or so. We have a solid evening routine which isn't always "exact times" but always the same rituals. So dinner, active play or a walk straight after, then chill out with drawing or Lego or something. Then supper. This is his big cue that it's wind down time. With supper, dad reads a few shorter books then I take him up to bed.

If all goes to plan, I read until he goes to sleep. Long stories or none fiction books work well as they flow better and don't get him too excited. If he wakes in the night I go straight in because the longer he's awake the less chance he has of going back off.

If he's finding it really hard to settle I'll bring him down for 30 mins or so, he'll do a set up with figures or draw then we go up again.

We got a trial of melatonin this year. Paediatrition prescribed it after a few meetings and sleep diaries etc but was very reluctant. Instructions included not giving it with food or two hours before or after food. I thought that was ott but research online I found a few parents saying it effected their kids stomach etc so I stuck to it. But it means I can't mix it with yogurt or anything and makes it awkward with his supper ritual. He refuses to take it. On the two occasions I've got it anywhere near him, he spat it out (all 1ml of it 🤣) Just saying this to balance out the "just get melatonin" comments as we really thought it was our golden ticket and we're a bit gutted with the reality.

Also, don't be afraid to go outside the box. For 6 months when he was 4 we read to him on the sofa until he fell asleep then carried him to bed because he was more relaxed there than "going to bed".

Good luck @CoughyGoLightly I hope you get some sleep soon!

Our liquid melatonin was initially issued privately. It works to get him to sleep, without fail.

Staying asleep is a completely different matter. Some nights he’s awake as soon as it wears off, others he sleeps though until 5ish.

Too much outdoor exercise late in the day actually doesn’t work for us, and we find that after a busy day he’s not exhausted, he’s overstimulated.

Try and keep the bedtime routine rock solid. We’ve got ours so ingrained now (finally) that he asks for dinner, bath and bed. We also do some rough play/sensory interaction before bath, and then bedtime routine immediately after. There is no gap between bath, and settling down for bed.

We use weighted blankets, white noise (Ewan the sheep still) and star projectors, with the lights off as soon as pjs are on.

It works to the extent that some nights we get 9-4/5am, and others.. we don’t. But we were getting none, so every cloud!

Hi OP.

I am sending best wishes.
We are on the other side. DS is 14 and ASD and started sleeping in his own bed, all night, aged 12.

He was a dream until he was one, then never slept properly for 11yrs. I spent every night up and down and in and out with him.

I hope you don't have to wait until yours is 12, but reassurance, it will come and now my battle has moved onto clothes, he's worn the same clothes without washing for 8 days including pants and refuses to let me wash them until school starts.

💐

A tv/laptop with oddly satisfying (it’s a genre) on YouTube helps my daughter sleep.

Just to add to what others have said.. my ASD son didn't sleep until he was 9 and we started melatonin. Was absolutely transformational. We do get it prescribed but we now give it my daughter who is NT (but hadn't slept properly for a year) and we get friends and family to bring it back from USA and Europe.

Melatonin did absolutely nothing for us so it’s not the be all :(

Short of spending years falling asleep on the floor to comfort the kid, it did get better with age and now she’s a great sleeper. We just had to keep a SOLID routine that didn’t change.

However you mention the use of screens, is there a way to dim the screen or get rid of the “blue” light like a night mode? Might be something to add to the list.

Definitely melatonin! As someone else mentioned, we get Slenyto prescribed from our DS's paediatrician and re order from GP each month. Still means lying in bed with him for half an hour but 30 mins is better than the 90 mins we endured before.

We have also accepted he needs less sleep than most kids even with the medication, so bedtime is never before 10pm. 4 nights out of 7 he still wakes at 4am, but 3 he will sleep until 7/8am.

White noise and / or classical music is good.

@CoughyGoLightly Cherries are a natural source of melatonin. You could see if your son would eat some before bed or drink a glass of tart cherry juice. Also arnica Montana tablets are effective for sleep.

Please consider the possibility of silent reflux. My boys have had it from Birth and peak times are 3am - 5am. The feeling might be so subtle that they don't register it's causing discomfort and waking them up. Then it can be difficult to get back to sleep if they have other issues going on

I found this with my 5yo who was prescribed 2mg. We dropped the dose to 1mg and it seems to have stopped the nightmares. We give it about an hour before bed as it takes longer to get him relaxed

My GP was resistant and made me believe they couldn't do it.. so I got the school involved (early years team and the health visitor too) who spoke to cahms for me and they came back saying to ask the GP to prescribe it as they would not accept a referral until he was 7 years old. They'd rejected it once mainly because their waiting list is so long and it wasn't seen as urgent enough.

I went back to the GP and got a different one.. The GP listened to the above and said he would drop cahms an email (as per their protocol). An hour later I had a text to say prescription was ready.

A few other things that have helped us are
•stories on Tonie, the same short story on repeat so that it becomes background noise. Familiarity was key.
•Before the Tonie, music by Ludovico Einaudi or Apple Music sleep playlist ( but this changes and the songs in a different order didn't work for us). Some of it was quite loud, quiet and calming wasn't always what was needed.
•A compression sheet, which is basically a really stretchy, tight sheet that they lie under.
•total blackout blind.
•one parent staying with them until they are asleep (that parents gets a small lie in).
•Double bed (easier for the parent to stay)
•Indoor trampoline for those days when it's harder to entertain them.
•Temperature. My son used to like it really cold to sleep.
Melatonin helps but not always. Some children are prescribed an antihistamine.

We really had to have the attitude that he will sleep when ready but that can be 20:00 or midnight. At 10 we are still having regular night waking as well. It's really tough, but it's not naughty behaviour, our son just doesn't recognise tiredness. We find bed times are impacted by the sunset as well.

I think melatonin is your best bet. I think you need to go to a paediatrician to get it though. I'm going to try and get a referral next week to get it, as my 2 year old has just gone down.
Never had a full night's sleep with him

Try this. I just recommended it to someone else also.
9 hours long and so soothing.
mindfulnessexercises.com/417-hz-wipes-negative-energy/#t-1712682623057

One DD plays classic fm on her Alexa to sleep, the other plays sleep on Spotify.

It's annoying as it's sold cheaply in Europe not even behind the counter

Your son sounds like my daughter. I've found success with audible ( she drifts off listening to sleep to it... Eventually) and a herbal sleep gummie