Hating my life right now

[ChangedName1236]

My DD is 9 and a half. Has never ever ever slept through the night. Not once. Always needs me there and it can take forever.
She lacks confidence which I've tried so hard to help her improve but I can't even go to the bin store in our block of flats (would take a max of 2mins it's so close) without her needing to come with me.
She wants me to sit in the bathroom while she has a shower....the list goes on.

We've been through the health visitor which started when she was 2, onto the school nurse when she was 4, we've been to CAHMS and had 9 sessions there of CBT when she was 6/7.
Had an ADHD screening which upon the results was decided she didn't score high enough for the full assessment.

Finally got to see a paediatrician just before she turned 8 and was prescribed melatonin and phenergan for sleep.
Sort of works but I still have to sit outside her bedroom for at least an hour every night if not longer.
We follow the advice of the paediatrician to the letter - no screens for at least an hour before bed. Decent diet, plenty of exercise. Had dosage tweaked along the way.

Nine and a half years. All I want is to put her to bed and go and sit on the sofa.

Tonight I had her in bed about 8:15 and sat outside till 8:40. Thought it was safe to move. Nope.
Moved at 9:30 once she finally stopped wriggling about - I walked into the kitchen turned around and she was there. I'm so fed up I ended up telling her to F off and leave me alone. Not proud of myself at all but she went.
Tried to go to bed at 10:30 and she bloody woke again as I went into my room (past hers).
I'm at my wits end. She is constantly up my arse at home, constantly moaning about friends at school not letting her join in etc (she chooses to hang out with the ones who don't let her join in rather than the others who do)

I'm a single parent and work full time and just feel like running away. All I want is to have evenings to myself so I could call a friend for a chat, have a cup of tea or watch something on TV.

Sat in tears writing this so if you're gonna chew me up and spit me back out please scroll on

So the bits at the end about not playing up for others is telling me this is more of a discipline thing. I'd start giving more tough love - I'm putting you to bed now you cannot leave your room it's sleep time now. If you do then you'll have to start spending more time at your dad's. Rinse repeat til she stays in bed. This doesn't sound like ASD to me (the sleep thing) but more playing you up to be honest!

I agree with this. Your dd sounds exactly like my autistic dd - she was diagnosed aged 5. Tbh things only got easier when I gave up on trying to make her sleep in her own bed. It’s not ideal but at least we all get a decent nights sleep now. The normal rules don’t apply and when I tried to implement them I had a deeply anxious child who wasn’t functioning on any kind of reasonable level. Since I stopped trying to “discipline” her and applying the usual rules and sanctions, she has completely blossomed and self regulates far more efficiently. I understand that isn’t for everyone but it worked for us.

You sound just like my abusive ex husband. Really quite extraordinary how much so…

Yes I'm wondering if this is the route she needs to weed out exactly what the issue is x

This is terrible advice. Please don’t do this.

For your information I ended things as we just made each other miserable.

A child is better in a home with one happy parent than two who can't get along.
We're so much better apart and co parent fairly well I think. First few years were tough but from age 3 onwards has been fairly plain sailing and kept him at arms length for me, I keep an eye but nothing worries me about DD being with him.

Also no where in my original post did I say he left me as I'm a terrible person - so kindly learn to read and keep your nasty opinions to yourself - as I asked in my first post.

Have a lovely day ✌️

OP I think you are probably referring to the AQ50 test which I mentioned, and if so it is only a screening tool. Her score does seem lower than cut-off BUT it can be hard to answer accurately, let alone for someone else....

A lot of what you have referred to certainly do very much seem like autistic traits..... one autistic trait is spotting patterns, including behavioural, and that is probably why so many people have picked up on things here immediately.

So you have:

Friendship/social struggles
Sleep issues
Anxiety

Plus all of these sounds very autistic to me:

"Things she has traits for is - clothing - just this morning changed her school T-shirt for another as it was 'itchy'.
Takes her at least 5mins sometimes 10 to put shoes on as she pulls them so bloody tight 🙈
Loves to draw but it's usually the same thing over and over
Likes to watch certain TV shows over and over too - I've managed to get her to watch something different over Xmas on iPlayer.

Bites her nails to death!

I noticed one trait was hair twiddling - I do this occasionally when bored lol!"

So there you also have sensory issues and also evidence of "restricted and repetitive behaviours", in addition to the social struggles a school and all of your other (significant) concerns around sleep etc.

Worth having a look at the actual diagnostic criteria, which are based around social and communication struggles and restricted and repetitive behaviours. As all of the screening tools etc. are really only looking at traits of these, which obviously can vary from person to person. A lot of what you have said does sound in keeping with the diagnostic criteria, although obviously only a professional can assess this through a combination of parent interviews, ADOS test etc.

I really think it is at least worth having a chat about this with her paediatrician..... as an autistic mum of at least one autistic child, everything you are saying fits. I'm not saying there is no other possible explanation, just that I really feel based on direct personal experience that it is worth exploring further.....

"Mild autism" isn't really a thing...someone is autistic or not, but some autistic people are higher masking than others and so other people may notice their autistic traits to a greater or lesser extent..... unfortunately though, high masking can often be devastating for mental health and wellbeing, leading in the long run to coping much less well, burnout etc.....people can often appear to cope well until they really don't...... the reason that "levels" of autism are not really given in the UK now is that how someone is affected is so dependent on the particular circumstances, sensory inputs, stresses they are under etc.... it isn't as simple as someone being slightly autistic or more autistic, and the degree to which it is expressed can very much depend on all manner of other factors.... hope I am explaining this ok!

What direct experience of autism do you have, either direct personal or professional? Because I'm autistic, with an autistic child and multiple autistic relatives and it all sounds VERY autistic to me, and to others on this thread, including at least one experienced professional.

It also sounds like you are unfamiliar with autistic masking. Issues like this at home (i.e. in a child's safe place) and not with others are absolutely classic masking/coke bottle effect, and masking in autistic girls especially is an absolutely massive thing).

Cracking down with discipline here could absolutely make this worse....OP please seek professional advice again from her paediatrician on how to handle this and ask about autism - explain the social struggles, the repetitive behaviours, the sensory issues etc. too! Have you told her paediatrician about these before?

Would she go to sleep if you put her in your bed but didn't stay with her?

Or is she saying she's not tired?

Totally agree - really terrible advice, and I hadn't even seen the part about telling her she will have to spend more time at her dad's if she won't stay in bed! This child is clearly MASSIVELY struggling, clearly relies on her mum to feel safe...... threatening her with being sent away, even to another parent's house, is absolutely fucking appalling!

I'm not saying all the people talking about ASD are wrong, and I will freely admit your daughter would drive me insane, and I would probably have said everything you have said to her and more (despite knowing it wasn't going to help anything).

But what does strike me is that if you have a naturally anxious clingy only child and a single mother who is desperate for space and air and sleep and can't help saying things like "Why don't you leave me alone" and threatening to send her to her dad's house, or begging her to please fuck off and go away, then you could get a vicious cycle going where the child is increasingly desperate for reassurance, seeks it in problematic ways, and the parent is increasingly desperate for freedom and expresses that in equally problematic ways.

I think it would be worth really thinking about that at the same time as looking into assessment for ASD.

No real advice but I totally get this and it’s bloody hard.

Also a single mum, working full time and have used the phrase ‘always up my arse’ about my youngest who is 7. Sleep has always been a nightmare, constantly needing to be near me, touching me, right behind me when I’m cooking, trying to do jobs etc. Fine at dads, grandparents etc so it’s just an attachment thing with me which I think actually makes it harder.

Probably a bit crap but I’ve put a tv in their room. Won’t fall asleep watching but gives me an hour or so in the evening to be downstairs by myself and then normally gets into bed with me.

Oh and I meant to add, my son is 9 and if he was in bed at 8:15 he would not go to sleep for at least an hour. He doesn't need to be asleep until after 9, and sending him to bed earlier than that is totally counterproductive, so I don't do it. He starts getting ready for bed at 9 and has no trouble falling asleep at 9:30. I suspect 8:15 is just too early.

Nothing more to add to this other than I have your sympathies. As soon as I read your post my immediate thought was ASD. Which is honestly infuriating to me (as someone with AuADHD) that no one has picked this up until many of us on here have mentioned it. The bloody NHS, CAHMS and health system is so h fit for purpose 😡

I take it this poster knows nothing about ASD.

ASD children can also mask when they are with other adults just like they can mask in school. Outwardly they seem OK. Inwardly they are in a state of high anxiety.

My DD was such an excellent masker I had no true idea as to the extent of her struggles until she hit her teens and could no longer cope. She went into autistic burnout and has been extremely unwell. It's horrendously common in ASD girls.

If the OP's daughter is on the spectrum (and there are a lot of things on here that indicate a highly masking ASD girl) then your advice is absolutely not the way to help.

A lot of people, without experience of ASD, think the same as you and I do understand why people come to that conclusion. I would have if I wasn't living it and know from awful experience that discipline in the usual way does much more harm than good.

It's also why being a parent of a neuro divergent child is so heartbreakingly hard and lonely.

I don't know how you keep sane, it sounds awful. I agree with other posters about another assessment, it's not normal at all.

@ThisIsASeaPlane

Thank you so much for all the info it's much appreciated!
If there's anything else please let me know as I don't know much at all about Autism but hearing from someone who knows first hand is so helpful - thank you xx

I've read through the other comments as well - thank you everybody.

When we last saw the Paediatrician we spoke about her having had the ADHD screening which came back as low/ no need for the full assessment but Autism wasn't mentioned.
I've been on the NHS website to try and find an email address for the paediatrician (this one is new as her old one went off sick months ago and hasn't come back so they swapped us. I had his email address but not the new lady, who I do prefer)

I was thinking to send her an email expressing my concerns and seeing if she would refer DD to Sleep Clinic now as it can take a while and ask if we can discuss possible Autism assessment at the appointment, somehow without DD (there was a student doctor last time also in the room, or if I can pop in while the nurse does her height and weight) or over the phone to see what can be offered.

I have also wondered if she needs some sort of counselling or something like that for her anxiety, she's had CBT which started when she was 6 almost 7, had 9 sessions but made absolutely no difference (possibly too young, she just sat and drew pictures and treated it like being at school from what the nurse told me)

I feel like if she could understand she is always safe at home and it doesn't matter if I'm outside the room or in the lounge for her to sleep it would make a big difference.

She won't stay in any bed unless she can see me x

I completely agree with you. I was totally at the end of my rope last night and am ashamed of my reaction but I just couldn't take any more.
I was doing my best to hold out until she's at her dads at the weekend and take the time to relax and reset but I just couldn't 😔

I've said to a doctor before to help me you need to help her, but I know I also need to find a way to cope better. I'm a person who seems to bottle things up for months or years and eventually the lid pops off 🙈

Oh, OP, I feel your pain. I've had 14 years and 6 months of this and so it continues... have just adapted to working full time on no sleep. I would say ASD is highly likely.
💐❤

Could you try audio books to keep her "company" at night? The local library often have apps that you can download for kids with hundreds of audio books on them. Or a white nose machine? Sleep hypnosis?

This sounds brutal . I'm not surprised you snapped tbh.

Short of tranquillisers I think most people would crack under the same strain - I've certainly been heard to screech "OH MY GOD WOULD YOU JUST BACK OFF!" under much less provocation.

If it’s an attachment issue could you try introducing a ‘transitional object’ - so something that provides the safety/security that you’re currently providing. I know it’s usually something that younger children use but it might be worth a try. My daughter is 7.5yrs and has only recently started sleeping through the night in her own bed and we’re now working up to her falling asleep by herself. She has a special squishmallow toy that goes everywhere with her - back and forth between our house and her dads, and was even taken into school when she was going through a rough spell there (we’re lucky in that the school is v.understanding). It really helped her to feel safe in her bed without me being there.

And go easy on yourself. Sleep deprivation is an absolute nightmare and can push you to your limits. I’ve definitely said things I regret when faced with night after night of wake-ups.

I also recommend audio books or short audio stories at bedtime