Please help I’ve lost all perspective - ASD teenager

[MyBrainHurts1]

My DD is 13 and is late diagnosed ASD

I like to feel I’m a good parent and cater to pretty much all of her needs but the one I’m really struggling with is her intense need for complete silence when she wants to go to bed

She doesn’t fall asleep easily so some nights its 8 and others nearly 12 so it is really hard to then have any sort of evening as she refuses to wear any sort of ear loops and any noise at all such as me and her dad talking downstairs or her sister ( 17 ) going to get a drink will send her into a complete rage followed by a lot of upset 😢

We have rearranged the house so that she’s in the bedroom furthest away from the other bedrooms and she has an en suite as sharing a bathroom was something she she struggled with

I am starting to feel very low and isolated basically going to my room when she goes to bed, waiting an hour or so before attempting to creep downstairs with boot her hearing to have a chat or get things done that I haven’t got round to but literally any noise and all hell breaks loose

What would you do?

Insist on ear plugs. Even if that means trying out a few types, there are headband ones with build in speakers if she doesn’t like the sensation of in ear ones.

if she ever wants to cope in university halls/a shared house/an apartment building/a city centre etc she’ll have to learn to tolerate others - unless she can live like alone in the middle of nowhere

She needs to make a choice of soundproofing of some kind to assist the sensitivity. You'll be castigated here for daring to find this difficult and told it is up to you to accept everything she demands or you're a horrible ableist NT parent, but it isn't.

First thing I want to say is please get this moved from AIBU. Lots of people will probably jump in, most of whom are unlikely to have any experience of ASD. There is a dedicated SN Teenagers Board if you want to ask @MNHQ to move it over there?

Well done too for rearranging the house, that took effort and shows her that you're taking this seriously.

Some things that have helped here are listening to a guided meditation to do with sleep abc hard physical exercise like running, Hockey, Skateboarding.

The thing that's dramatically changed things though is Melatonin. It's not a magic cure and doesn't suit everyone but for us it's been transformative.

She sounds very anxious about the possibility of not sleeping. If she's lying there working herself up about insomnia, waiting for the first noise to come and feeling that any slight noise will determine whether it's going to be a good night or not, she's likely to be flooded with adrenaline. I don't have any answers, sorry, but would suggest that black-and-white thinking may be the issue here. If what I suspect is true, then she will be more comfortable if she realises that sleep is still possible after interruption, and then she will be more physically relaxed and able to sleep (that's not very helpful of me - overcoming those patterns of thought isn't as easy as realising it needs to be done). But if she is tightly wound up, storing up all the energy she needs for an emotional flare up the moment someone makes a noise, then how can she physically get into that sleepy mode?

Sympathies to you - sounds really unpleasant for everyone.

I would give her some loops and some melatonin.
She's 13 and not 7.
She will have to adapt and survive a bit.
I say this as someone diagnosed autistic at 17.
You are not to be kept a prisoner in your own home by her tantrums. Not saying buy a drum kit and practice but you know... general household noise is acceptable.

Mine wears Noise Cancelling headphones. They are expensive and bulky though, but you can't live like that.

Asd 14 dd here and sleep did use to be tricky. She also has the bedroom away from all the noisy areas . Which also happens to be the biggest room .
But a few years ago we put an alexa in her room and brought lots of audio books . So long as its on when she goes to bed she falls asleep.
I agree with others that being completely silent isn't practical and she does need to adjust to some noise . Otherwise as an adult she won't cope at all .

Also, does she realise that while she is asleep there will be lots of noises going on - coming from outside, or the normal house creaks etc? That might help psychologically. The presence of noise doesn't equal the impossibility of sleep.

As mum of Child with similar needs, you cannot live like this

When parenting a young adult/teen with SN, it is very important you do not constantly override your OWN boundaries to try and help her

So you can accommodate to a certain level but you have gone way way too far already

Be kind about helping find head phones or ear plugs

But do not stop living your own life

You cannot fix the world for your child, you have to instead help your child to live in the world how it is. A world that has noises and other people in it

Mine is 15 and it gets better but you do have to push through the demands. Galaxy projector was a good buy as it makes an ambient noise which got her used to noise but covered up other house noises.

My autistic teen is prescribed melatonin. Can you ask for a referral to paediatrician?

Is she still under an peadiatric care? If so I would talk to them about trialing melatonin and a referal to a sleep specialist if available in your area.

This.

I have a son aged 12 with asd and I have asd myself. We are both exactly the same. I have to go to bed an hour before my dh to get into a deep enough sleep so that he doesn’t wake me up when he comes to bed. I’ve always been like your dd and cannot stand any kind of noise / light when I go to bed. This meant I stayed up very late as a teen as I waited until the house was quiet before I could sleep.

Melatonin does really help my son, he’s been on it since 3 - he’s got a diagnosed sleep disorder and gets melatonin prescribed via the paediatrician (his autism is quite severe and he attends a complex needs school).

I don’t really know what the answer is but a lot of the replies show a complete lack of understanding of autism.

I’m so grateful for your replies that I feel quite tearful!

I will reply properly after I’ve taken her to school but I just quickly wanted to add that she’s been discharged from CAHMS but the GP has offered sleeping help and she’s completely refused it

She won’t take any form of medication - we saw a private psychiatrist earlier this year as her anxiety in every area was becoming extreme and she refused to take the antidepressants completely and said the doctor was wrong in her diagnosis!

You could try framing it as the melatonin is something that her body should be making naturally- many people with autism just don’t make it in the right amounts, so it’s more like a supplement than a medication. Worth a try.

I think if she is refusing help then there is nothing wrong with explaining to her the impact that her actions are having on others. Sit her down and calmly discuss it and then ask her to help come up with a plan to allow everyone to relax and get the best sleep possible

Medication, is it became won't swallow pills? This is solvable if it's a capsule, cut it open and put content on food. It's how my teen takes her adhd medication

This is a tricky one because her normal teenage inability to self-regulate is compounding her legitimate sensory needs. So the problem is two-fold. Sounds like you already did everything you could to mitigate sensory needs but, perhaps, you are not doing enough in terms of teaching her to self-regulate. She needs to learn self-soothing strategies and get some help with sleep. Things like yoga, meditation, breathing exercises could help in the moments when she feels herself getting upset. And she needs to meet you halfway in terms of using earplugs - there are so many options that it could be just a matter of trying a few. But have this conversation when the moment is right, not when she is in the middle of a strop.
It's tricky and some things are very difficult to overcome. I have extreme sensitivity to light which pretty much means my house only has dimmable lights and my partner "is not allowed" to turn top lights on in a bedroom. I also have reasonable adjustments at work meaning the estate actually removed top lights over my desk. Before they did that, my colleagues very kindly didn't use top lights in the office (which, technically, why would you anyway during the day). It's not really anything I can solve even if my parents threaten to remove my phone and privileges.

She might take melatonin if she understood that its not considered medicine in lots of countries, but a supplement? And see if you can get a form that is less medicine like. I know gummies are buyable. I woukdnt recommend buying them as in the uk they are prescribed, but I dont know if GPS can prescribe gummies. You can also explain it just supplements a hormone that your own body makes. If she is comfortable with having asd you can explain a lot of people with asd need a bit extra. If she is upset by her diagnosis, avoid that.

We also had an Alexa and played an audio book. The same one every night for years. I think that it masked odd background noises buy he knew the story so wasn't listening in the true sense.

Good advice here, just because someone is nd, they don't get a free pass to make everyone else's life a misery.

As a starting point I think pushing bedtime later than 8 would help somewhat, my dd really needs less sleep, even as a newborn it stood out as a difference, and I really found exercise in the evening helped too, we had a dog so that's a good in, but also she and I did yoga one night and Zumba another, only younger person so she loved that the older ladies praised her.

Offer to try different noise devices but ultimately you may also just have to say no, discipline, asd kids can be told off for bad behaviour. I got given good advice when my dd was 2 (at diagnosis) that I needed to stick to my guns otherwise we would have a very limited life, if you start a pattern they want to stick to it ... I'm not expressing myself well, too early, but you don't have to let her ruin 3 other lives.

For context, my dd is now a young adult and it did improve post puberty rapidly

I think this is really unhelpful. As your daughter has ASD this can't be looked at simply as a child being selfish and making unfair demands. The sound may cause her physical pain. She may not be able to regulate her feelings. It may not be selfish behaviour but something she can't control and I think punishment such as taking away a phone is unreasonable. You wouldn't do that to someone with a visible issue. It's not pandering, she's not being rude, she has a medical condition and she may not be in control of her fight/flight response. Talk together, when the time is right and find a solution that can work for you all, it may take time.

Exactly this. I have ADHD not autism but I'm very noise sensitive when I'm trying to sleep. I play white noise (so do DC) and this masks other noises in the house. I also had to let go of the anxiety around noise keeping me awake and almost coach my brain into this understanding.

Your daughter will learn to manage this but she needs to understand that her own hypervigilance is contributing to the problem. Honestly, white noise might be the gamechanger! Editing to add we play it on a tablet or an Alexa device.

It WILL get easier Looking back I didn't reliably learn to fall asleep until I was 15!

There is no way I’d be able to sleep with any sort of headphones / anything on or in my head. I’ve tried lots. (Asd and sensory issues).

I’ve never lived in halls or any sort of shared accommodation, partly because of my issues with sharing with others and noise etc. It’s not an essential part of life!