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?

I don’t necessarily have a solution, but just wanted to offer solidarity from a mum who also has an autistic 13 year old daughter (and AuDHD 16 year old daughter!) The addition of hormones into the mix has made things feel quite unbearable at times, and I know how hard it is when you’re constantly dealing with the stress of trying to predict the next blow up moment, and figure out what the boundaries are for behaviours you never imagined having to deal with. Constant adrenaline/ high cortisol levels are tough on our bodies and minds. Hope things get better for you. You sound like a committed, compassionate parent.

I would get DD to work through the issue with your guidance.

You don't like it when you hear noises when trying to sleep, you find it frustrating, we can't / won't stop talking/ going to toilet etc. So what could you (dd) do to help herself. Get her to think of solutions she could do not what you will do! Expecting silence isn't an option, as can't be done. Work through every rage with this, what can they do to make it easier for them to fall asleep/ stay asleep.

My dd and dp are both autistic though different needs to your dd- dp uses a sports headband earphones and listens to something in the background to help him fall to sleep.

Headphones/loops could make it worse.

Definitely try white noise instead or music that she likes or any noise she enjoys to help remove the focus on house noises.

She's refusing sleep help, you need to ask her what she thinks is the solution. If she's in denial about her diagnosis, why does she think she has problems sleeping and with noise? Finding out what she feels is happening to her might be the best way to come up with a solution to it.

Would she take a melatonin gummy, op? My daughter isn’t keen on tablets but we’ve been able, in the past, to access the gummies either online or from relatives living in Europe where you can buy them over the counter. They have the same amount of melatonin as the tablets prescribed by the doctor and they’re made by reputable pharmaceutical companies.

Autistic individual here and I’ve been in your daughter’s shoes. My husband still remarks about the fixed sleep routine I had when we met and how that’s completely changed now.

The root of my issues were unhappiness. When I’m unhappy I put strategies in place that make me feel calmer and I cling to those as I desperately need that respite in my day. Since meeting my husband, I’ve been diagnosed with ADHD and as a result of this I’ve been prescribed medication to regulate my emotions. I’ve also seen an Irlens specalist (not an optometrist) and now have coloured glasses which filter out waves of light that send my brain in to overdrive. I now WFH so don’t have the sensory stresssors from work. I’m also in a loving relation and have an amazing daughter I’m incredibly grateful for. Your daughters at an age where she has little control and school is often like a war zone as it’s sensory hell so it’s unsurprising she is craving calm and stability when she’s at home

Do you have children with autism? It’s not ‘pandering’, it’s recognising that her daughter has sensory issues and triggering this causes meltdowns. No, it’s not fair on everyone else, but ‘consequences’ will not have the effect on an ND child in the same way. It will be a perpetual emotional war.

@MyBrainHurts1 is your daughter under a consultant? My children are primary age but they have melatonin to help them go to sleep. I think there’s some natural remedies available as well, like sleep patches but obviously research such things thoroughly before considering. It’s very difficult for some people with autism (and certainly ADHD) to switch off naturally, it’s not something they can help due to lacking self regulation of the nervous system.

Other things to consider - no screens in bedrooms if possible, but maybe a basic Alexa to play music quietly. I’m nearly 40 and have a radio programme on a timer to help my brain focus on noise outside my own mind to get to sleep. Also (it may sound silly) but is her bed comfortable enough? I put a thick duvet under the bedsheet for my children, and the bedding itself can’t be scratchy. Thick pillow used as well. No ‘big light’, something like sensory or low fairy lights if possible.

Is it all noise? Does she like any white noise? Some people like headphones because of the noise they create(like when you cup your hand over your ear) rather than because they block noise. Not that I could sleep in headphones. I find extractor fans unbearable but having a blowing fan in my room at night sends me straight off to sleep and blocks out other sounds. Sounds tough on you. I hope you find a solution.

Sounds like you've made lots of adjustments to family life already. It's just not realistic or fair that the rest of the family cannot talk or get a drink.
I'd tell her complete silence is not doable and are needs to compromise. So give her options :

• ear plugs (the silicon ones are comfy)
• ear muffling soft headband
• white noise machine- if she doesn't want it in her room you could set it in the fall outside her room. This will muffle lots of noise.

Have you tried giving her magnesium supplements. Can be great for sleep and anxiety. You can buy ones that are like jelly's so easy to eat.

Adding to the sympathy for 13 yr old daughters with autism. We don't have this exact problem but many other similar ones.

We have found "curating" a moment to talk about this sort of issue - saying we need to talk about it, when shall we talk about it, put it in the calendar - quite helpful and if we approach it as a puzzle for us all to solve it works best, i.e how can you get to sleep and we get to make normal evening noise? That seems to help too. If she helps suggest the answer that's always good (though I would expect to get through a few 'I'll just put up with it and never sleep AGAIN' type of things before we came to a solution).

Both my ASD children sleep with white noise on (running water/rain type noises). This enables their brains to stop paying attention to other noises and really helps.
Maybe try and have a problem solving conversation when she’s in a good mood and suggest this as an option

Don't take advice from people who are not living in this situation first of all.

Find support from other families with autistic children who udnerstand how autism and anxiety play out together

Most autistic children struggle to fall asleep - we have been giving our 10 year old melatonin (prescribed) - for about a year and it has transformed bedtime.

GP was not helpful but once we had autism diagnosis - we went via school nurse service, local sleep clinic - we were put on waiting list had to complete sleep diary and then have a rolling melatonin prescription.

I know all people with ASD are different (like all people) but my son will have the irrational reaction but when I hold firm (calmly and rationally) he’ll eventually come to me and we can find a solution.

In your instance I would not agree to have a silent household at all, offer the compromises and let them rage. Eventually reasoning will be the option.

BUT this is my son so I don’t know if that approach would work for your daughter.

There are reasonable adjustments eg giving her the quietest room, keeping noise to a minimum etc. But all sitting silently in your rooms for entire evenings is beyond that and not equipping her to live in the real world (detached house for one person for ever?). Have a conversation this weekend, there are various options such as white noise, melatonin, headphone earplugs, meditation etc and it's not fair of her to refuse to consider anything but expect you all to make huge efforts

This chimes with my experience (17yo boy with autism).
Communication works better when we let him have input into the timing of the conversation.
‘We need to discuss your bedtime routine and how we can make it work for the whole family, when would be a good time?’
This makes sense in terms of the ‘monotropism’ theory of autism, that it’s to do with how attention is focused and the difficulty switching it from one thing to another. If you try to have the conversation to your timetable it BEGINS with stress from their perspective, as their attention is wrenched from whatever it was on to something else they don’t necessarily want to think about. Then the problem solving approach makes them feel less attacked and like they are ‘wrong’.

Given that she has refused the ear plugs, I would be completely ignoring her. She has zero right to rule the roost. She is 13 years old and is not in charge. She has already had you rearrange the entire house to suit her (did you get a thank you or just sulks?)

I would give her the tools to manage as best she can and expect her to get on with it. DD wears noise cancelling headphones 90% of the time. I wouldn't be pandering as other people won't do that in the real world. There are grey/white noise options on iPhones or you could use it from a different source

Other things to help with sleep that we've had success with is a weighted blanket from kudd.ly and a large pregnancy type pillow (or a cheap duvet folded longways into a sausage and stitched) which can be used to 'nest' her.

The way some speak about autistic children on here is awful. If you don’t live with autistic children I’d really keep opinions to yourself. They’re not sulky, bossy kids - their emotional regulation ability is a notable part of ASD as a disability. Having to rearrange living arrangements or manage the household in an untypical way is a common adjustment, people living with disabilities shouldn’t have to bend over in gratitude to their carers for meeting their needs.

This is excellent advice. Start from a place of conversation if possible. Not from a place of ‘you’re being a problem and you need to stop’.

Yes and then after a year or two of consistently doing this sort of thing you find they have been coping on their own in their room by self-harming and other terrifying behaviours.

Brains that work differently need parenting differently (though what kid was ever hurt by someone engaging with them and problem solving together?)

Exactly.

If you had a child that couldn’t walk you wouldn’t expect them to run up and down the stairs and get angry when they couldn’t do it. It’s the same thing, hence the term hidden disability.

I had similar issues with my ASD 19 year old.

She has horrible issues with sleep (always has) and I think her problems with sleep were really around anxiety of not being able to sleep and not having any control around sleep, so she tried to control everything else around it if that makes sense. As well as the sensory issues from the ASD

She really had to understand that we weren’t going to creep around the house in total silence - we closed the living room door in the evenings, didn’t have the tv blaring, used the downstairs loo, reasonable stuff, but we weren’t going to sit in total silence in the dark and that she had to meet us half way.

She introduced better sleep habits - left her phone downstairs. No tv for an hour before she wanted to sleep and she got into the habit of reading books rather than watching shit on her phone.

Experimented a bit with bedding - she discovered she preferred a really lightweight duvet with thick fleecy pyjamas if it was cold

White noise helped shut out the background noise - she actually ended up finding one that “quietened her brain” if you see what I mean.

Earplugs - I recommend Loops. She hated earplugs and headphones and we worked our way through several pairs but loves her loops.

She also had to figure out some coping strategies - recognising the worst nights were usually when she’d overfilled her ‘bucket’ during the day and had become overwhelmed and over stimulated.

And melatonin - a game changer. She was only on it short term, but it helped break that cycle and anxiety around sleep so all the other techniques had a chance to help. I know your DD says she doesn’t want to take it, but has she said why? Can you get to the bottom of why she’s so anti the idea?

White noise or pink noise may help. I have a Sleep Sounds app. You can also get a kind of headband thing that puts flat speakers over your ears so that you can sleep on your side, if she would tolerate that. Or headbands that muffle noise.

Ultimately she will never get complete silence at night in any probable living situation. It's just not realistic. With the best will in the world, you cannot provide those conditions. You could be alone in the middle of nowhere and there would still be owls or something. So logically she has to try things that may help her adapt.

She needs to engage with the help the GP is offering, but it's not easy to persuade a reluctant teenager of that. Is there any trusted and respected adult who might be able to gently convince her of that - an aunt or teacher or something? Sadly parents stand much less chance of being listened to at that age. An outsider has more chance.

No, you would out measures in place for them. A stair lift, a downstairs bedroom etc. OP has done just that. She has offered earphones, moved her child’s bedroom (probably at great inconvenience to others and with no thanks), is offering medical appointments and yet ‘that’s still not good enough’. No way should she and her husband have to live like the nuns in a silent order when she js already working hard. One day this girl will be in the workplace, and while reasonable adjustments may be made for her, she won’t get things all her way and she will have to learn to deal with it.

The ultra-sensitive hearing is a sensory issue associated with ASD. Whatever the answer is, I can say from experience that it is not berating the OP for "pandering" to it. I lived with a close relative with ASD who was very sensitive to noise. I didn't know much about ASD at the time, sometimes we had massive rows about it and all it did was make him even more miserable and stressed than he already was. He would put his music on very loudly which wasn't much fun for the rest of us but did at least mean we didn't get screamed at for opening doors or cupboards. Even now, a good twenty years after he moved out, I still take a good ten seconds to close doors, very very softly.

I don't have any solutions for you as such, OP, but I really, really feel for you. It's incredibly hard for you and incredibly hard for her.

I agree with you BUT with the caveat that the OP's daughter is very young and needs some time to develop more helpful coping strategies. She'll get there OP and you've had some helpful strategies for opening the conversation from people who have been there.