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.

Do you take a small amount? Does it stop working at times?

It’s my DH who insists he still needs to go to school - even though it causes him 100% more anxiety.

DS is very academic but his special school were only able to offer 2 GCSEs and after pushing them them, allowed him to do an IT tech award gcse equivalent. So he got GCSE level 8 for maths and English language and distinction for the IT. He also has bronze and silver award Arts Award for music, which is equivalent to level 2 I think.

This year school said they weren’t able to offer any formal quals and said he was too ‘able’. But we pushed to keep him there as socially, he needed it. So he’s supposed to be doing life skills/preparation for adulthood/work experience etc.

However, he’s in a class of children who have much more obvious needs than him whereas he masks all of his difficulties. The sensory overload for him being in a class of children who try to touch him, who scream, who spit etc is totally overwhelming but DH still believes it’s his best option.

DS refuses to go to a mainstream college which is why school are paying for him to do a level 3/A level equivalent at home for 2 days….which is great and he really enjoys it.

He isn’t currently in school though because of his anxiety, he wasn’t eating or drinking from the previous night to 15:30 the next day…..not even sips of water. His BP was very low, he was dizzy, and he lost weight. His ARFID at home also got much worse. So the ED team signed him off for a while and he is now just doing the one lesson a week.

@iloveeverykindofcat ds refuses to take antidepressants as he wants to be able to feel his stress. Also, due to his ARFID, there is nothing to ensure he will take them every day as you’re supposed to. He currently won’t even take his vitamin D every day if he’s stressed.

It looks like a lot of people are forgetting autism when they give suggestions for sleep.

It sounds like he might have a circadian rhythm disorder called delayed sleep phase syndrome (DSPS) and needs the help of a specialised sleep medicine clinic. The treatments include light therapy and melatonin to bring his sleep back. Some Drs suggest the complete opposite and to make bedtime later each night until it goes to a normal time i.e. if he sleeps at 6am then you would go to 7 am then 8am.

A lot of people with DSPS (including myself) decide to free run with sleep. After years of fighting it I decided during lockdown to just sleep when my body wants to and have adapted my life around my sleep instead of exhausting myself by trying to keep normal sleep hours.

DSPS info

Good facebook group for support with DSPS.

That’s very interesting @Gingerkittykat . I will check out the link you gave.

I don’t mind any suggestions at all - I’ve been trying to work it all out for him for almost 18 years and I’m shattered and welcoming of any and all ideas! 😊.

For DS, everything is linked….autism, ARFID, sleep, mood, anxiety. It’s just a shame that so many GP’s and health professionals often don’t treat holistically….although to be fair, the ED team are pretty up to speed on everything and are very understanding of his autism and how he specifically presents.

We are very lucky to live in a county where the ED clinic have been trained by GOSH to understand, diagnose and treat ARFID. So many people sadly don’t have that level of input in their county.

My son has just been diagnosed with DSPS, after years of chronic sleep difficulties. We are awaiting advice from a specialist sleep clinic.
I'm just about to drop him in to school, because he couldn't wake up this morning. It's so hard to know what's best. We'd let him free run, but he would hate that.

With regards to the melatonin/anti depressants, is he better with liquid? Ds sensory issues means they have prescribed his melatonin as a liquid and we can pass him the syringe at the right time and he takes it without thinking. Also you can miss melatonin and it doesn't matter. So it would be easier to try that than an antidepressant to start with.

With regards to the school, if your son can't cope sensory wise with the other pupils, you might need to be his advocate and show your oh why it isn't suitable. Our council tried to allocate a special needs school for ds due to his extreme sensory needs/anxiety and disregulation. We had to fight for him to have EOTAS until he was well enough for mainstream because we knew he wouldn't cope with the behaviour of the other pupils in a special school.

He could have a totally online education package, which it sounds like he is more than ready for, academically, with a from home social package, built up very slowly as his health improves.

That's good that at least you have some well-informed input. You'd be surprised how many professionals don't know what ARFID is. I was misdiagnosed with anorexia when I was a teen which completely ignored my autism and the 'treatment' made me 200% worse. I'm quite a lot better these days though, as long as I'm not unduly stressed. I manage my life very carefully to ensure stress does not become too much.

@EnglishRose1320 I’ve just told DS about DSPS and he sounded quite interested to know about it.

DH just thinks his lack of sleep at the normal time is down to late get-ups; saying the effects he has is like jet lag.

But we have been doing this early morning get-ups for over a week now and he still isn’t sleeping until the early hours and so once we wake him at 8:30, he’s literally only had about 5 hrs sleep.
Thats good you have now got a diagnosis for your son.

Melatonin-wise, ds would be better able to manage tablets I think. He’s not good with liquids and flavours/flavourless liquids.

We are waiting to see what adult services say about a package at home once he leaves school. But I just think it will be less stressful for him if he wants to do further studying, to just get him an online qual. The trouble with many online courses is that they have strict deadlines. The course he’s doing now, has 12 assignments and you get a year so much more laid back as to how fast/slow he does it. He’s actually ahead and only has 2.5 to finish before May.

That’s not good that they misdiagnosed you with anorexia - I think it happens quite a lot. But it’s good that you are able to pretty much manage your stress levels ok yourself now.

@Verbena17 I started off on 3mg and now on 10mg, sometimes I take more, sometimes I take less.

It really helps me get to sleep, I struggle with that. They tell kids who are on it to take regular breaks but no one's ever told me to do that.

My ds is on 6mg, like your ds he prefers tablets. But because he doesn't struggle to fall asleep/just to stay asleep, his Dr wanted him to crush it to make it fast acting, he couldn't tolerate the texture of the crushed tablets- so he went for the liquid instead, which thankfully he can tolerate.

Online definitely sounds right for your son and I hope you manage to find more options that aren't too time restrictive.

With regards to the social package, ds refused to engage with the support workers for a long time, months of them just sitting in the hall outside his room! But now he goes to McDonald's drive thrus with them, looks around shops etc... they are building up to getting him to do the ordering.

Thanks, that’s good to know. 🙂

ooh yes - crushed tablets would be a bit 😬!

Thats great your ds is getting good support and moving forward at his own pace socially. So can I ask, who are the support workers? How would access help for DS like that?

Would that come as part of the package? For my DS though, he will 18 and out of school by July. I’m still not sure if he’ll be able to/want to access anything through a package with strangers.

He just wants to have some time out once he leaves school then hopes to get a job from home. We worry it’ll isolate him even more but we know that if we don’t encourage him to work from home, he probably won’t work at all.

Package comes from social care, my ds is 17 and will transferring to adult care soon. Your ds would need a RAS assessment to assess need, can self refer or be referred by a professional involved in his care. Then the package should be specific to your child and meet his needs, so for my ds it's an Enabler, but it can be all sorts of things.

Our ds at his worse, didn't want to socialise with anyone/engage with the world at all. Unfortunately his mental health spiralled as a result and he became suicidal. So whilst he didn't want the support, we felt we had to continue with it, for his best interests and for his safety. I couldn't watch him the whole time, so it was respite for me as much as anything.

And I'm so glad we did persevere, he now engages with the support worker once a week and has a small group of friends his is engaging with again. In fact he is doing incredibly well atm. I spent years thinking we would never get to this point (he was under section at one point) and I honestly couldn't see a future for him.

Don't get me wrong, sleep, weight and sensory issues are still huge, but taking the edge off the anxiety with a mix of medication/therapy and support has made all the things associated with his autism mostly manageable.

Do you have a parent support group in your local area? We have one for parents who support children with additional needs ands mental health difficulties. They are great for emotional support and also for knowing what's available support wise in your area.

So even though your son is almost 18 like mine, he still has an EOTAS package in place too?
So we had an annual EHCP review at school with a woman from the Transition team I think (not EHCP team). I can’t actually remember much of what she said but the head was asking her about a package and said things like online courses, therapies, cookery lessons etc. I guess that’s the type of thing you mean? And that your DS has?

I think there was an online one but I knew many of the people in it and my DS doesn’t want me to talk about him to anyone we know…and that’s a large majority of people in our little town. He left his mainstream school and all his old friends and has never seen them all since. It’s very sad and I feel bad but he was refusing school and mainstream just wasn’t right for him…we thought.

Sorry - I’ve totally veered away from ARFID and the topic is ED’s. Apologies.

When your child is neurodiverse all the issues overlap don't they, I don't think anyone will mind you going off topic.

Our son had EOTAS for just over a year, but managed to successfully go back to a mainstream when he was 15- it was a totally different mainstream to the failed attempt in year 7. However his EOTAS was available for as long as he needed it and we could have requested it permanently, but he actually chose to go back to school.

Don't forget with an EHCP, you can push for an EOTAS right up to 25 if that's what's best for your son.

It's sound like the ideal package for your son would be a mixed funded package, part education and part social. They do exist but they normally need a bit of a fight to get. It's what our son had for years 9 and 10, and now education is back at school but th3 social funding carries on alongside that.

In terms of support for you, I'd be more than happy to send you a private message of a support group I use, I use the face to face group, but they have on online group which I believe is open to out of county parents as well. Sorry don't want to post it on here, otherwise it gives away where I live.

Thanks for all the info - yes, sadly everything overlaps!
I will make a note of the ELTAS/social support you mentioned and then start next week looking at options. Not sure his school are going to be letting him go for just one music lesson a week until July are they? But when I mentioned tagging on the next lesson about careers after music next week, he just slumped into a mess on the desk, head in arms and telling me to leave as he’s too stressed now.

I really don’t think school is the right place for him anymore and I think we would be better placed getting him support at home and in the community when he’s able.

Thanks for the link of the online group - I could keep it if you message me it, in case I feel I do need something in the future.
thanks again - lots of helpful info on this thread 😊