Very low weight and sleep

[Verbena17]

Hi,
So DS 17 is currently 8 st. He is 5ft 11. He should be about 2st 4 lbs heavier.
He is autistic and has always found getting to sleep difficult.

Over past weeks - months, he has been laying in bed awake until the early hours, more recently until 6:30am/7am he says before falling asleep.

DH doesn’t think it’s true and that he’s falling asleep earlier then waking up and just not knowing he has been asleep.

With his low weight, he feels weak most of the time.
This week, the 3 of us decided to try a new routine, where by DS is in bed lying down listening to his relaxing music by 12:30 but is woken up at 8:15am every day without fail, having to get up out of bed by 8:30.
DH says it’s going to be like jet lag for a week or so until his body clock turns round and then he reckons he’ll be falling asleep much earlier. Last night DS says he fell to sleep about 3:30am and the night before it was 4:30am.

Does this seem safe to do this whilst he’s very underweight and feeling so weak? We are hoping having a better circadian rhythm will help with his eating too.

so he is saying he’s not falling asleep until 6.30/7?

what time is he getting up? And what is he doing during the day?

Hey my daughter had issues with her sleep I consulted a Dr while specialised in sleep..he suggested letting her stay up until her body naturally wanted to sleep then she was to wake up I think 10 hours from then and go outside and get some sun for at least half an hour fairly soon after waking…once the “fall asleep” time is established move the time they go to bed to be15 mins earlier than this every few days…I bought a fit bit for her so I could see how/when she slept

Thanks. We had a sleep charity really help when he was younger but now he’s nearly 18, it’s harder for us to be stating when he goes to bed. However, he said he wants to get it back to a decent time with our help. We basically did the same thing you said you did - where we start off with the current bedtime then work backwards to a decent time. That was when he was about 9.

The problem is, he is a routine of having to do wordle when it renews at midnight. Our new rule is that he does wordle then is in bed by 12:30. We don’t feel that’s too bad for an almost 18 yr old.

Im just worried about the current lack of sleep and no energy/muscle aches due to his low weight.

So he is saying he hasn’t been falling asleep until 6:30/7, yes. That was only for a few a few nights before we started this new routine. Before that, it was more like 5am.
He was then not getting up until 1pm/2pm in the afternoon. He is currently not in school - only for an hour a week so there’s not a lot to get up for.

During the day, he’s gaming mostly. We take a drive out most days to get him the food he will eat - MacDonalds. That gets him out the house and eating some protein. He can’t do loads during the day because his weight is so low and he’s not well enough to exercise more than a bit of walking and to be honest, he’s not really doing that .

Then I’m with your husband.

He is going to sleep so late largely because he’s doing nothing all day and just gaming. And then waking up so later that breakfast and snack time has passed.

you need him up more hours in order to have more opportunity to get food in him

And that’s the new routine. However it’s not as simple as making him have food during the hours he’s awake….he has ARFID.

He has GAD and is currently only managing one hour in school a week for one lesson, due to extreme anxiety. He’s gaming all day because other than an online course he’s doing, he has very little else to do. He is unable to exercise because of his very low weight 🙁.

He doesn’t have any friends in real life, except for 2 lads he was at school with but who’ve now gone to mainstream college and so his life is very lonely.

We first need him to eat, then once he’s put weight on he can exercise safely.

I'm autistic with lifelong insomnia and ARFID. I'm always 'slightly' underweight according to BMI but I don't believe BMI is particularly accurate. According to my doctor my health is good. The only things that make me sleep are intense exercise, long busy days and mirtazpine, and even so I've been awake since 3am today. I don't think its going to get any better whilst he's just sitting around gaming. Does he understand that the sooner he gains some weight the sooner he can get active? I'm assuming he has no body image issues or anything? Can you just increase the quantity of safe foods until he starts gaining? Also, is he on a daily multivitamin with iron? I have found that B vitamins decrease my anxiety. By the way, mirtazipine increases appetite in some people. It doesn't in me, but part of my autism is that I don't really have hunger signals like a neurotypical. It might be worth a shot for him.

Thanks for your reply @iloveeverykindofcat .
He’s currently below the 2nd centile and so he cannot safely do intense exercise as he would simply be reducing the small amount of calories he does have.

He isn’t currently on medication and I know of the drug you’re on - but I read the side effects and contradictions and because of his current sinus tachycardia, I think it’s risky.

He doesn’t have any body image issues, no. Although I do realise ARFID can sometimes turn into anorexia if the person does become focused on their body image. For him, there is a definite link to his anxiety level and ARFID, as well as his sensory difficulties. So he will reduce his food intake if he’s anxious to the point where he’ll only be eating around 800-900 cals a day. At the moment (since the weekend) he’s on about 1400-1600 and yesterday he managed 2200 cals.

It’s all very tricky to balance and I just wondered about the exercise thing. The Marsipan guidelines are kind of helpful but not explicitly for ARFID.

Seems like its a bit of a vicious circle. If I was just sitting around all day I'd be so anxious I couldn't bear it. What about something like Ensure? They have both shake textures and a clear juice. I drink protein drinks myself that are blended to be very smooth because I can't tolerate anything that is 'bumps' in a sauce. Once of my earliest memories is not being allowed out to play after lunch unless I ate the rice pudding. Well I couldn't eat the rice pudding. So I sat there across from a dinner lady for the entire hour, without moving or talking. At the age of 5. You'd think that would've clued someone into the autism. But I digress. What tastes and textures can he tolerate? The trick is to get the most amount of calories in that form.

There are other drugs for sleep, but they're all addictive, so not really a path you want to go down unless its an emergency.

Might there be anything else that brings joy and purpose into his life? Bird/train spotting, painting, model making? Has any rough talents he could share as a volunteer somewhere? Help others? Just thinking of distraction from his problems.

What support does he currently have in place, OP?

It is a vicious cycle up to the point that he is very underweight and everything that comes with it.

I guess my main concern was if it’s doing more harm than good making him get up after only 5 hours sleep when he’s so underweight?

He is brilliant at piano and currently has a music at his special school once a week. He isn’t currently in school for more time as he’s been so anxious and had virtually stopped eating. However, he wouldn’t volunteer anywhere as he doesn’t like performing in public and finds talking to anyone impossible, other than a few teaching staff and close relatives.

We have support - he’s under the ED team at the other end of the county and he is currently being weighed and checked health-wise every 2 weeks due to his weight/height ratio.

The ED nurse implied a few months back that he should be getting lots of sleep as his weight is so low. That’s what I’m asking about really I suppose. If not enough sleep is going to be harming him?

As far as I know, there is no particular reason why being underweight makes lacking sleep any worse for than for anyone else. Obviously lack of sleep long term is not great for anyone, but I can't think of any reason being underweight would make it worse. No-one can actually go without sleep until we die. We will sleep at some point. The longest I've ever stayed awake is just over 48 hours.

One thing I've found is that doctors and nurses themselves often have some very odd ideas about food and weight. Whenever they say (or worse, imply) something that doesn't make sense to me, I ask for the reason. I only accept science-based reccomendations. But its taken me a long time and a lot of practice at advocating for myself to get to this point.

Thanks @iloveeverykindofcat - yes you’re right ….health professionals often do have odd thoughts about things.

I guess as long as he’s resting for those awake hours, it’s good. It’s not like he’s up gaming until 3:30am. He lays down after listening to soothing music at about 1am and just lies there, waiting to fall asleep.

But really, undereating and being so sedentary would give anyone insomnia. Does he understand his situation? Does he himself a plan for weight gain and improving his lifestyle? I completely understand that anxiety makes it difficult to eat food. What about build up shakes?

Has he tried Melatonin?

Is he under a specialist for his weight? My ds is autistic with a diagnosed sleep disorder and weight issues due to restrictive eating. School wise, he is in a good place now, but a few years back his anxiety meant he wasn't able to engage at all. We had to tackle the anxiety, and the sleep and eating have both improved a little as a result. It's still a massive battle but it's one he wants to engage in now, he wants to get better.

Things that we put in place when he was at his worse

1. Antidepressants for his anxiety
2. Cbt for his anxiety
3. A mixed EOTAS package for his education, so he wasn't doing nothing all the time.

This included, going out with a support worker once a week (a lot of mcdonalds were consumed), a tutor coming to the house and going to a 1:1 computer lesson, plus a therapy farm.

1. No gaming during school hours, apart from when it would be break and lunch at school
2. A list of activities to try and achieve each day, which included the EOTAS things plus things like playing a board game with me.

I did have to give up work and still haven't been able to go back, his care needs are high. However I now have a happy child, who engages with life and wants to become independent. I totally sympathise though, because at is worse, I thought we would lose him and it was so hard to fit for the care he needed.

@iloveeverykindofcat he does know how it’s important for him to gain weight - he really wants to.
But like you, I think he just has natural insomnia.
@PritiPatelsMaker - we haven’t yet tried melatonin but I’m edging closer to it. Is there something gentle we can get that’s not prescribed or does it have to be prescribed?

@EnglishRose1320 so his anxiety is too high to engage with a tutor at the moment and he’s in his last year of 6th form and not working towards an actual qualification this year. So he’s doing a Level 3 photography course here at home on the days he’s not in school (even though he isn’t currently in school for more than an hour per week).

Once he finishes school in July, we would like him to learn to drive and he ‘passed’ the official theory practice test over and over, as school did it with them for a whole year. He has been so anxious since starting school all those years ago, we think it will be good for him to have some time away from anything formal, and so I will help him for a few months- going on buses with him, looking at train timetables, cooking, teaching him to do chores for himself.

Currently, his thought processing is very rigid and I don’t think that will ever change but I’m hoping it will reduce. So if I ask him to make me a cup of tea, he #imply says no - I know how to but I don’t want to. He’s not being lazy or rude. He just doesn’t understand why he would need to. I tell him i think it would be lovely if he made me one - he doesn’t get it. He says why would it be lovely? How strange.

I actually think his sleep will improve once he stops school. He absolutely hates it - interacting with people he can’t trust or who really challenge him sensory-wise etc. It’s just extremely overwhelming for him. I know we have to help him little by little but it’s going to be a very slow process.

I worry for his future - when we aren’t here. But I know all parents of children with SEND must have that same fear. I spend evenings sat on my own crying - feeling so helpless because one day, we won’t be here and he will be left to fend for himself.

we haven’t yet tried melatonin but I’m edging closer to it. Is there something gentle we can get that’s not prescribed or does it have to be prescribed

This one has to be prescribed but it does sound as if he's really struggling.

We haven't used it but a DF's DS has ADHD and ASD and has it prescribed from time to time and I know that it really helps him.

According to this information it has to be taken with food so maybe you could request the slow release version. Have a drink and a protein rich snack, do Wordle, take the tablet and then try to settle down.

Sorry its so tough, I completely get the crying on your own in the evening.

Ds couldn't engage with anything until he had been on the medication for anxiety for several months and even then it was a very slow return to things- over a year.

Does he need to go to school? Does he have an ehcp? If so, his education has to be legally funded by your county until 25. Would it be better to take a year now, to really focus on his mental health and then work out what's best for him education wise. I know he isn't in school much atm, but just completely removing it for a while, was a significant step for our ds.

You can buy melatonin from abroad but its the same as what you would get prescribed here and it's best to go the offical route. You can start on a very low dose, take it half an hour before you want to go to sleep. Ds takes his before his last activity, so your ds could take it before he did Wordle.

This sounds like a great idea. If the new sleep pattern doesn’t work out in a week or so (I think it’s strange it hasn’t yet), I think I might see about it.

Thank you so much 😊.
It’s very hard but comforting to know others know how I’m feeling.
If it wasn’t for the ARFID, things like getting meds prescribed would also be a lot easier. As well as being too low weight and so the side effects can be worse, it’s the fact he might refuse to take antidepressants regularly and the consequences of missing doses and all that brings with it.

The ED service he’s under did agree that he would have to ensure he took anti-d’s same time every day. It’s another thing we’ve put off due to the added stress of another thing that isn’t straight forward.

Can he not go to the dr and get melatonin? I've been prescribed it since I was 16 and been on it since, I'm nearly 40.

I am also on citalopram which improves my anxiety and OCD. The tablets are tiny so he might find them easier to swallow.
(I should say though I've never actually suffered from depression.)
Must he go to school at 17? If he's set on A-Levels, there's no time limit. He could take some time out to get healthier and then do them later.