Please help I’ve lost all perspective - ASD teenager

This is a difficult one to navigate. As many PP have pointed out, this is not just her being irrationally difficult. At the same time, as others have pointed out, the more she can learn to find solutions that work and don't require putting everyone else out, the better for all.

re melotonin - very difficult and I feel your pain. DS almost always refuses to take his. I can sometimes convince him if, for example, he has an extra early start by reminding him it's not "medicine" as such but rather a supplement and that in fact, in many countries, you can just buy it over the counter. I also remind him that it doesn't make him pass out like a sleeping pill will. It's just an aid. I would also suggest taking a slightly more relaxed view on bedtimes - perhaps a bit later to start with or agree that if she's struggling to sleep, she can sit back up and read for 20 minutes or similar.

I would also be suggesting that you look at white noise or other sounds that would drown out any external sounds - we are past this now but for a while, DS went to sleep with rain sounds on his Alexa and as a baby relied heavily on the music from his monitor. A friend's dd slept for years with audio books playing very loudly - my friend would turn them off remotely before she went to bed hours later. her.

Depending on how she is and what support you have in place, you do need to be having conversations about the fact that while you are very sympathetic to the challenge, it's simply not practical for the solution to be everyone else goign to bed in silence at the same time she does. I think that teenagers' natural refusal to believe that everything they think is 100% true is often x100 with ND children, but nonetheless, it's a lesson that has to be consistently reinforced.

I hope you can persuade her to try melatonin and possibly Sertraline by talking about them being supplements rather than medication as others have suggested.

One thing that might help is getting her outside each day as sunlight does have a positive affect on sleep, for all ages.

Will she read when she's in bed? I've had trouble getting to sleep for years and reading is the one thing that's almost guaranteed to help.

It's a shame that she thinks the diagnosis is wrong. Do you know why she thinks that? Just before and during the assessment process we talked about people we knew and famous people who had ADHD or ASD.

A MNer might be able to recommend some age appropriate books for her where the main character has ASD

I was coming back to say something similar. There are lots of very able people with autism who are not able to find a workplace that is tolerable for them due to their sensory sensitivities.

This is one of those situations where people who don't have the disability in question (or don't have a disability involving very pronounced sensory sensitivity) really just need to accept the experience of people who do have it even if they can't imagine how it would feel for themselves.

Also, if I could suggest that you ask her ‘what is the problem with the earplugs’ and you might be surprised with the answer you get and come up with an alternative based on her answer.

There’s a lot going on here and, but deep down I believe that the special needs of one, does not outrank the needs of everyone else in the house.

There is always a solution.

My feeling is that she is like a person not wanting to let you call her an ambulance, she is not well enough to make that decision so you have to make it for her.

Could you try the melatonin gummy sweets and say they are like vitamins that her body is not making ?

Keep trying keep posting keep asking for help. You will find a solution x

Actually employment rates for autistic individuals are quite low. The ONS puts employment rates of autistic adults at 22%. This is the lowest of most disabled groups.

I would like to think this particular issue is solvable with care and patience, but there are plenty of aspects of autusm that you just can't learn to deal with.

Ha, this is me! I have had insomnia all my life, even as a very small child. I focus in any noise however small and it stops me from sleeping. (I am also autistic)
Last year i bought a white noise machine from Amazon- it's like a miracle cure!. I sleep with it on my pillow and if my neighbours are being noisy I have slept with it on my head. The white noise prevents me from focusing on any other noise.
And the rain setting helps me relax enough to fall asleep

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.

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.

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.

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.

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?

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.

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?)

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’.

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.

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.

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?)

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’.

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

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.

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.

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

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).

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.