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!

By all means try melatonin, but be aware it isn't always the silver bullet we want it to be. My autistic son, who is now 22, went through a very bad phase of sleep when he was about 4. We were prescribed melatonin, it worked like a charm for a couple of weeks. The next phase was that it carried on sending him to sleep pretty quickly, but after a couple of hours he'd wake up screaming and was then up for hours. He's non-verbal, but we think he must have been having night terrors. After a few nights of that, we just gave up with the meds.

My post seems to have been hidden - because I mentioned the brand name of the gummies we use! Hmm, begins with B, delivered from Europe, they make berry flavoured gummies that are effective, and I buy them as back up because my DD (who is prescribed melatonin on the NHS) goes through phases where she won’t swallow tablets. They are just as effective.

Melatonin worked great at getting ours off to sleep (same as you he was doing laps of house going absolutely bonkers etc) but remember it doesn’t ‘keep’ them asleep. We still have several wakings a night

My Autistic child is prescribed Melatonin called Slenyto on the NHS under shared care. So the GP does the scripts but it’s overseen by the General Community Paediatrician. I had to do a sleep course first to prove I’d tried EVERYTHING first. Which was a zoom course an hour a week with other parents for about 6 weeks I think.
We tried buying the soft chewable ones over the counter first but as they aren’t properly slow release although they helped him fall asleep, he just woke at 2/3am for the day which was even worse of course.

Another with the melatonin. DS1(14) would up and down upwards of 30 times a night before we tried it. It just helps him wind down. He's still on it now and been taking it since he was about 3-4 years old - unusual but paediatrician recommended. He wasn't diagnosed asc at the time and was on adhd pathway.

Are any friends going to the USA on holiday? Ask them to bring you melatonin home.

We don’t have any devices or use of any for him so it’s nothing like that as we never introduced them to him. Out and about most days so very psychically tired. Just the melatonin doesn’t keep him asleep, only helps the initial bit
sorry have no further advice op

We recently had a sleep consultation as my son's melatonin prescription was stopped

They recommended a consistent bedtime routine every night /hard stop on to / screens after a set time; then bath / reading / moshi etc and massage which was rolling a fitness ball up and down his back which in fact he does like.

It has improved but needed consistent effort over several weeks before we saw much progress .... and of course disintegrated completely over Christmas

He then alternates every few weeks between weighted blanket and stretchy sheet

Have you tried white noise? I’m NT but my brain will not shut off but white noise puts me to sleep and it’s highly recommended for children.

Ask them to refer you to the community Paeds specifically about sleep urgently. Complain & tell them it affects his schooling. Tell them you can’t cope like this much longer. Could you afford to go private? Have you looked at NHS right to choose for the assessment? That could speed it up a lot. They pay for a private assessment with certain private companies.

Have you spoken to the school nurse service? They talked us through our sleep routine and after it was clear we were doing everything possible, arranged a melatonin prescription through our (previously reluctant) GP. It's made a massive difference. Our son is still awaiting diagnosis but everyone's pretty sure, as it says on the tshirt. Magnesium bath salts also seem to help.

I’d definitely try melatonin from online. I didn’t try till DS was11 ish but it’s an absolute game changer. My DS takes a low dose and doesn’t even need it every night now, it has taken away that worry/stress around sleep. It just makes such a huge difference.

I would absolutely be happy with this if he didn't struggle so much due to tiredness
The only time he'll amuse himself without our input is using his tablet which I'm not willing to leave him with at nighttime unfortunately. Hopefully that might change

White noise

Relaxing/distracting in any way possible - my son used to be up til 1am getting more and more upset and I would never let him look at a screen because I believed it was bad for him. But he I let him watch tv for a bit before bed, he was relaxed enough to drift off to sleep without too much trouble.

Melatonin - we were prescribed it by paeds but he couldn't swallow the tablets so I ordered the gummies in the same strength online. Absolute game changer.

Hope you find something to help.

I've never heard of this before but will definitely look into if its available to us

One of mine needs the distraction to fall asleep, so she falls asleep with her tablet watching a programme on Netflix she's seen 100s of times and now associates with bed time.

Go and see your GP and ask if you can have melatonin. When my child was diagnosed they asked about his sleep. He is quite bad at winding down etc, but he gets enough as he sleeps well once he gets to sleep and seems to function ok. The paediatrician said I should get back in touch if it got worse as they could prescribe melatonin.

Did you use the word g u m m i e s ? That word gets auto hidden...

@Hollyandgrinch Yes, audiobooks helped my daughter too. She would never read in bed, but they helped her settle.
Also, this may be glaringly obvious, but stick to the exact same routine; no deviation from it at all if possible. My daughter (autistic) would not settle without the same routine every night. If I attempted to deviate, that would be things messed up for hours. Things like snack before bed, particular night lights on, the same audiobook over and over, etc. Melatonin a good plan also, however my GP refused to prescribe it.

I will say, mine son nearly 9 had trouble getting to sleep, once he was asleep he has always been down for the night (up at 6).

So, melatonin isn't the magic pill.

Has he got a dx OP? If so he should be on melatonin - it was a game changer for us

also:

no screens
weighted blanket
shower before bed
dinner same time every night and no sugar, decent food that he will actually eat/
probiotics - optibac

Well we are going through the thick of it with meltdowns every night and sometimes all nighters 😅

But the few things I find eases it is.
:sensory lamps. (We have the fish water one and she gets distracted by it which helps speed up the calm down) or even those night star lamps.

I don't talk, just respond to her with hugs, pats when accepted and if we chat do it all in whisper to keep the whole vibe zen. (I mimic those meditation voices 😂)

Background calm sleep sounds. Classical music is on in the background of our bedtime routine and then rain noises or sleep sounds.

We have been told to refer to cerebra for sleep help as a self referral, they take kids waiting for the diagnosis. Ours us going through the process too.

Sleep sprays on pillows also work well here, alongside melatonin, exercise till you drop.
You might also want to consider ADHD alongside the ASD

My DS used to want his tablet but hell no!! - he would play minecraft all night!! He's not even allowed audiobooks as he will listen to the full 3 hours then want to discuss it at 11pm! No screens after 6pm. No toys either!!

He listens to repetitive white noise (waves and piano chords) and when he was 6 it was mostly doodling on the whiteboard that kept him quiet and slowed his brain down.

I often take him on a 5km walk before bed too. Doesn't always help as he talks at me the whole time! But does at least help him fall asleep.

If you can access Spotify there is a good guided meditation playlist for kids by 'new horizon holistic centre' open.spotify.com/playlist/2nVAJ7bR7bruTvMfGuUmlv?si=P2ybNxNUTcaBf81eUuUlAA&pi=e-_LWl-RPLQh-D

The lady speaking has a lovely soft northern accent and they have all different sleep scenarios, my DS loves it.