ASD and sleep - what worked for your kid?

[Eieiom]

Hi

I've a five year old, recently diagnosed with ASD.
He takes hours to put to bed every night and wakes most nights as well. Always has done.
I'm completely exhausted tbh, he's currently sleeping with me because we are so desperate.
I feel like I've tried everything and have had great structured sleep routines since he was a baby and sleep hygiene is good.
I have an appointment with a paediatrician soon and am thinking of asking for a trial of melatonin.
I'm keen to hear from other parents with kids with ASD who have recommendations/ideas.

Mine had ADHD rather than ASD, but sleep has always been an issue.

We just stopped having bedtime at all when she was around 2. It wasn't worth the fights and I was much happier when we stopped.

So bedtime routine... bath, pjs, story etc and then she could do whatever she wanted except have parental input after 9pm.

So she would colour, look at books, play with toys and generally take herself off to bed around midnight or whenever I went (we co-slept for a very long time).

She's never really needed sleep so it worked very well and massively reduced fights and stress (she's very PDA so I pick battles).

We had no real issues until teen years when she was really struggling with anxiety and ADHD. Started on melatonin and that works 99% of the time.

Thanks so much, really helpful to hear that. I've just abandoned trying to get him to sleep in his room, it was turning into a nightmare. It takes a long time for him to settle so maybe I just need to lean into it like you.
I'll ask about melatonin too I think, it might help.

Melatonin works well for DS3 (ASD). Lots and lots of exercise works for DS2 (ADHD and awaiting an ASD assessment). DS1 has other complex needs and while medications help at nighttime, nights are still difficult.

Interested in hearing from you both @Headfirstintothewild @OhCrumbsWhereNow about screens. Little guy loves to rest in front of tv and I waver between thinking it soothes him versus making it worse. How have you negotiated this?

Mine didn’t sleep in his own room until way older than five, can’t remember when. Maybe 8 or 9. It was just easier. Until he started school he went to bed when we went to bed, but did also have a lengthy afternoon nap.

If he’s not getting much sleep anyway would just leaving him up until the whole house goes to bed and then cuddling up with him work? Then once that is very settled transition to him going up slightly earlier, but still in your bed and with someone whilst he falls asleep. Then once that is settled transition him into his own room with someone there, and once that works you’d probably want him to sleep alone. I’m thinking this may take years though. Do what you need to do though to get everyone sleep. Things will change over time. The “you’re making a rod for your own back” stuff is only relevant if it is possible to exist currently whilst doing or not doing whatever it is that is viewed as less than ideal. You have to do what you have to do and to hell with conventions. Giving yourself permission to do what works for your family and to consider this the right way is sometimes half the battle. Giving a child a tablet at bedtime so that the rest of the house sleeps is not the wrong answer in some cases!

Cerebra do courses about sleep and have loads of info on it if you want to try the more conventional, research based approach.

Other things to try if you haven’t already: weighted blanket or a flat sheet turned the wrong way round and tucked well under the mattress to help with sensory issues,, children’s stories, noises (heart beat, white noise etc) or music playing in the background whilst he drifts off, a light that does a sunset like a Lumie one, a back or full body massage with almond oil before bed and melatonin. We leave our (much older) child to play for 30-60mins on his own in the bath as being with other people is quite stimulating and this seems to calm him. Then we do a story together before lights out.

My child also will read in the night if he’s awake now. It’s not perfect but he’s resting and the rest of the house can sleep. I doubt his sleep is ever going to be great but not panicking about it yourself so that they don’t panic about it is more likely to result in better sleep all round.

It doesn’t work for all, but we limit screen time because that is what works for teen DSs. Weekdays outside of using screens (other than phones) for school work, whilst travelling or during treatments for a medical condition/physio DSs can have 1 hour a day. Weekends are more relaxed as long as it’s not at the expense of other things.

DS1&3 aren’t interest in their phones. DS2 would be surgically attached if allowed - we don’t allow him to have his phone overnight (it amazes me that he gets messages at all times of the night) or 30 mins before bed.

DS1 still co-sleeps for at least part of the night. We have tried various lighting, a 2 way monitor, walkie-talkies, doodle book/pillowcase, worry book, tents, weighted blanket, music, white noise, dream pad pillow, ear plugs, teddy, relaxation, various apps, brushing, audiobooks, meditation, adapted version of gradual retreat, elastic band method, sleep clinics, medication… Things are better than they were, but nights are still difficult.

Screens have been quite easy for us.

DD is severely dyslexic so reading is not a thing for her. I hated things like CBeebies with a passion - far too much jumping topic and inane nonsense. So I got DVDs from very early on of decent quality films - Narnia, 5 Children & It, Tom's Midnight Garden, The Secret Garden, Harry Potter etc and DD adored those.

She's very active and has always been very into music and drawing since a very early age, so I have zero limits on screen time as she self-regulates what she'd doing.

Often it will be screen-related but it's not just mindless youtube or tiktok, she'll use them for drawing apps, or music production, or a bit of gaming. I'd be more concerned about enormous amounts of time just watching rubbish rather than using a screen for multiple activities.

That’s lovely!

A different take on it here, but my child is very into his encyclopaedias and reference books and doesn’t really want to read stories…but he will watch some films and fiction on TV. So for that reason I consider fiction based screen time to be educational as it’s teaching him about emotions and friendships, as well as things that will be useful for studying English at school.

Having said that screens go off either at the start or end of dinner (which depends on whether he’d cope with a family chat or not that day) as I think they keep him still and occupied but don’t calm his brain enough for him to easily sleep afterwards.

Worth fitting a blue light app if they are using in the evening as well. We have one that comes on automatically

Melatonin.

We had tried literally everything else!

2 DCs who have ASD diagnosis each. Both needed melatonin and my DD who is 16 just never really slept until she was about 13 but with melatonin and becoming a teenager she sleeps for 10-12 hours straight. They both co-slept til they were about 7 neither of them slept through the night until they were about 4. Melatonin made a huge difference.

Can I ask those who used melatonin, how did you use it? Did you take breaks and how did that go? @YellNellBell @Phineyj
Did paediatricians prescribe it and what kind of dose/course did you try?

Agree, Melatonin is the solution here.

DS3 takes 2mg of Circadin 45 mins before bed during term time. It works well for him as long as he has had enough exercise during the day. It was originally prescribed by a paed. DS1 takes 5mg of immediate release melatonin and 2mg of prolonged release year round. Prescribed by CAMHS. It has improved nights with DS1 but hasn’t solved the issues.

DD takes it every night - no breaks - either 1mg or 2.5mg depending how she feels. Occasionally she's forgotten to bring it with her if we've been away for a weekend and it's a nightmare getting her to fall asleep without.

We've always ordered it online from the USA - costs about £30 a year. UK psychiatrist was fine with us doing that and easier than going via the GP

No breaks or she goes loopy but we stick to the lowest dose - 2mg but she's allowed up to 6mg

I'm afraid I checked for placebo effect a couple of times using a visually identical vitamin D tablet. Cue loopiness.

Both are on 2mg taken about an hour before time they should be going to sleep. No breaks. DD seems to respond better to it than DS and sometimes DS hasn’t taken it because he’s been so tired naturally. But it was an absolute game changer. I wished we’d known about it when they were younger. I wish I knew poor sleep was something to look out for children with ASD.

I trialled 1mg last night and child went to sleep without the usual 2 hours of shenanigans. He went to school today and the teacher remarked he was particularly up for learning today. Fingers crossed it continues to work!

That sounds hopeful. Fingers and toes crossed for you!

Melatonin changed our lives! Just a low dose but can't imagine life without it now.

We've tried a few nights now. Going off to sleep much easier and he's much happier during the day because he's getting enough sleep and not having two hours of meltdowns and disruption every night. Fingers crossed it keeps working.
I felt really strange about trying it, but as a family we were hanging on by a thread, and your experiences helped!
Thank you all!!!

That's great news, OP.

We are four years on from that stage and still thank our lucky stars something finally worked! It was four years of hell!!

It gets so bad. My health is really suffering and I'm trying to recover now. Something had to give, and that was me unfortunately.
If you haven't been through it, you'd never understand.