Sleep (or lack of) in my son. Help!

[PinkHairbrushClub]

I have an 11 year old son who cannot get to sleep on his own. Often cannot get to sleep unless one of his parents sleeps with him. We are at the point where my DH and I alternate sharing with our son so we all get rest but obviously it’s impacting us a fair bit.

We have tried everything. He has a consistent routine, has done for years, no screens for over an hour before sleep time, plenty of books, dim lighting, comfy bed etc. We have tried gradual retreat both when younger and now he’s older, we tried just letting him read to sleep last summer when lateness mattered less, we’ve tried adding sleep gummies into the routine. Nothing. No budging. We even tried just leaving him (with love and reassurance) but he just came in at midnight tired and ratty. He hated meditation with a passion when I tried that! Hated having audio books / quiet calm music to sleep to. I spoke to our GP and his attitude was he’d just grow out of it.

This is just background really as it feels like we’ve tried everything with no support. However, yesterday we finally got verbal confirmation of an autism diagnosis for him. He is very bright, very academic, but his social / emotional skills are where his autism impacts most strongly. I have read online that autism can impact sleep. As parents it seems like he cannot just switch his brain off at night without one of us.

Guess my questions for the experienced parents among you are:

1. What have I missed trying? I feel like I can’t see the wood for the trees.

2. Does a diagnosis potentially open any avenues of support I don’t know about?

3. Reassurance I’m not alone would be lovely.

When you say sleep gummies, do you mean melatonin? If so, at what dose and was it immediate release or prolonged released?

Has DS tried any other medication to aid sleep?

Has DS had a referral to a sleep clinic?

No. They’re just Bach herbal remedies. The GP has dismissed us so far so no medicine and no referral.

as I’m typing I realise I should probably try the doctor again, but it was so demoralising last time.

You aren't alone.

My DD has been in with me since Covid, we did get her back in her bed for a few months but then my DM got frail and DD relapsed. She is on melatonin and promethazine hydrochloride. We haven't had a 'calm' period in the last 2 years to try again. She's an adult now.

That sounds tough on all of you @TeenToTwenties

Well, it's not ideal certainly. My DPs are in their 90s and I am away 2-3 nights a fortnight or more. She finds the coming and going disrupting, plus of course worrying about her grandparents. Then settling to different college courses, work placements etc on top of that too. It keeps falling to the bottom of the priority list.

I would request to try melatonin. Who diagnosed ASD? If that was a local service, ask if they will start it. If they won’t or it was RTC or private, ask for a referral to paeds or CAMHS (which depends on who would prescribe in your area) or a sleep clinic.

If melatonin doesn’t help, there are other medications that can be tried.

Although some DC still need to sleep with parents or have parents there while they fall asleep. DS1 is a teen. He needs someone with him while he falls asleep and needs someone with him every time he wakes in the night. We often get in bed with him and he has overnight carers 2 nights a week. He takes a couple of medications to aid sleep and has tried many more. We have also tried many non-pharmacological methods too.

@TeenToTwenties that sounds incredibly tough. Juggling caring for DC and DPs adds a another layer of complexity.

Thanks @scoopofmintchocchipicecream it was a right to choose referral and just got the verbal confirmation of diagnosis this week, report to follow. I’ll try the GP again and ask the question and ask for the GP I think most highly of. He at least a listens!

Just so you are aware, most GPs won’t start melatonin.

Great. Our psychology service who did the assessment are non prescribing. I’ll see what happens!