9YO can’t sleep, potential ASD. Feeling desperate

[AMistakePlusKeleven]

Our 9yo DD cannot sleep. We read for an hour before bedtime, then lights out and I sit with her for between an hour and a half and three hours for her to fall asleep. She can’t be left to read alone in bed or she will go and wake up her siblings. She can be aggressive and hits out/throws things when frustrated/dysregulated so we have to be physically present upstairs.

It is absolutely breaking me. Bedtime is a constant battle, we have tried so many different approaches through the years and have realised she is almost certainly ND despite being told otherwise for years by her previous school. We have moved schools and they have submitted an ASD assessment referral but we have been waiting for 44 weeks so far and don’t have an initial appointment yet. I am absolutely happy to be there for her and reassure her anxieties but my DH and I don’t have a relationship in the evenings anymore because we have 0 downtime. When I am sat with her, sometimes she will go to sleep very slowly but nicely but 80% of the time she is shouting insults at me or slapping my arms.

I’ve spoken to a school nurse and she confirmed that we are already following all the advice she would be able to give and that she would only be able to suggest waiting for the consultant to maybe prescribe melatonin but it is incredibly hard. I’ve looked at seeking a private consultant to prescribe melatonin but the only ones I came across were not local to us and we are only just keeping our heads above water emotionally/admin wise as it is without adding more to the mental tick list. I’m not sure what I am looking for with this post but I feel really lonely in this. DD is an incredible masker so no one really sees or understands what it is like at home, even her very involved grandparents only see a snippet.

The inability to sleep alone now seems to be anxiety rooted as well as she cannot relax until she has someone lying next to her and she sobs and begs us not to go if we try to leave or do a “I’ll come back up in 5 minutes approach”. Sometimes she will allow the 5/10/15 minute increments but she will time us to the second and is often out of bed before we can go back up after five minutes.

She sounds very like my daughter who has ADHD/ASD. She was exactly the same with sleep and in the evenings and it nearly broke me into a million pieces. We had a lengthy drawn out saga with getting diagnosed as well, as she is a super masker and people kept telling me that she was “fine”. It was honestly just so horrendous (but you know this, as you’re living it).

Melatonin actually did save us, it made such an incredible difference from the first night of using it. Once you get some downtime/sleep, managing the rest of it feels more possible.
You may not feel comfortable to do this, BUT you can buy melatonin gummies online from a company called Biovea. Each gummy is 5mg, so you should cut it in half to make 2.5mg, which is the equivalent to the prescribed tablet dose (generally 2mg each for a child). Each bottle costs around £25 so relatively expensive BUT they work and if it saves your sanity then it’s definitely worth it. I wasn’t sure about this initially, a friend recommended me the website but it’s all perfectly ok, and worth remembering that in the US and other countries you can buy melatonin freely in every pharmacy. In your situation this could be worth a try, the sleep deprivation and evening torture is just awful, it really is. Sending you big hugs.

OP would she sleep on a camp bed in your room knowing that you will be coming up there to sleep later? Or alternatively would she fall sleep in your bed and then be carried back into her room when you go to bed? I agree this is about anxiety and feeling safe and she doesn't feel safe alone in her bed. She may feel safer in your room/bed and it could be a way to possibly get your evening back.

Please don't listen to anyone who says you need to punish this out of her, people here are really big on punishing. You can't punish anxiety out of a child.

Completely agree with advice from PP. we co-slept with DD for about a year while we got through this awful phase. Then she decided she wanted her own room again and went back there. Sometimes the anxiety at night is just too much and I agree that what she needs is huge amounts of support and comfort (even though she’s driving you nuts).

You could look at a referral to a sleep clinic. There would still be a waiting list, but in some areas it is a shorter waiting list.

I have a teen DS who struggles with nighttime. For many years, he slept with us. He does now start the night in his own bed.

If you want to persevere with DD in her own room, leaving for 5 mins is too long to start with. Can you try literally popping outside to put something just outside the room? Then 30secs, 45secs, 1min.

Can DD discuss what she finds difficult about nighttime during the day? DS1 has poor insight and can't put the ideas we discuss into practice, so talking during the day about nighttime didn’t help. He can't 'do' visualisation either, but if DD can, some find that helpful.

Other things we tried with DS1 included various lighting, dream pad pillow, ear plugs, a 2 way monitor, brushing, worry book, tents, doodle book/pillowcase, music, white noise, various apps, weighted blanket, audiobooks, life size teddy, relaxation. Going against all sleep hygiene advice as a last resort, I tried letting him watch the Lego Movie in bed, but it didn't work. An adapted version of gradual retreat. They didn’t work for us, but something might work for you.

For us, medication helps. He takes melatonin but on its own it isn’t so helpful, but he takes other medication to aid sleep as well.

Some people use antihistamines, most commonly, Promethazine. You can buy it OTC. Although don’t tell them you are using it for sleep.

Is DD receiving any support for her anxiety?

Double posted sorry.

@AMistakePlusKeleven if you’re still reading go to dr Kinali she’s private neurologist and will help with melatonin (we got them in first appointment )

you might have to see her for 1st appointment but the rest can be remote

also likely she has adhd and her circadian rhythm is interrupted but you can start with melatonin for now before moving on to adhd drugs etc x