Worried about my 10yo ds1, anyone else's child with ASD been through similar?

[Greensleeves]

I don't know what to do

Normally ds1 is happy, confident - quirky and difficult and all that comes with having AS - but happy in himself

About a week ago he started appearing in tears shortly after going to bed, saying he felt worried and "discombobulated" - that's our special word for when he's stressed about a transition or anxious etc

he says he is worried because he can't imagine "what it's like to be asleep" and he is lying there worrying anf can't sleep

I did some relaxation and visualising and breathing techniques with him (used to work when he was littler) but he was still tearful and worried. It went on for a few nights and I was concerned that he was actually losing sleep because we were ending up in long conversations about how the brain works during sleep etc, and it didn't actually seem to be helping (ds1 will talk the hind legs off a donkey). I have talked to him during the day a few times and tried to probe around the issue a bit, but not got any joy really, he insists he likes his new teacher and is getting on with his friends etc, no problems he's hiding, nobody picking on him

dh thought ds1 was 'milking it' and we needed to be tougher and tell him to go back to bed - dh isn't hard-hearted, he's worried about him too, but I could see his point as ds1 would talk all night if we let him

last night I was in the bath at about 11pm and he came in in tears, having worked himself into a real pickle, he couldn't really tell me what was wrong other than that he was "worried about feeling worried again". I was kind, reminded him of the breathing and the visualising and sent him back to bed

this morning he looks dreadful - really - and was visibly stressed out and on the verge of tears. He said he was too tired to go to school, dh said being tired wasn't enough of a reason to miss school in Y5 and I agreed. ds1 said could he go to the office and ask them to ring us if he felt too tired during school. Dh said it wasn't a good enough reason and he wasn't ill. I agreed but tried to be kind about it.

I'm really stumped here, I don't know what to do. My attempts at helping aren't working and he looks like he's had the stuffing knocked out of him . If anyone has been through similar I would be really grateful if you could share and let me know what worked for your child.

sorry it's a bit of a marathon

Hi greensleeves

Yes went through something very similiar with DS who is 9.

He said everytime he closed his eyes it felt like the room was closing in on him and he could see flashing colours. Also kept asking if this was the real world? This went on for about two weeks.

It started off straight after we turned the light on and after a few nights he was getting himself in a state before he went to bed worrying that it was going to happen again.

I took him to our GP who suggested that it had started by worrying about something subconsiously (turned out to be a boy at school) and had got himself into a cycle with it. He suggested phenegan which I think is an antihistamine to break the cycle and to give to him before he went to sleep. To be honest we chose not to use it because we didnt want him then seeing it as the answer.

I ended up laying down with him until he was asleep to break the cycle, he also stayed at his nans and the change in environment seemed to work.

I imagine that it may be the whole routine back to school thing which whilst they cope well with on the outside its a lot to deal with on the inside, especially year 5 as they are upper juniors and the stakes seem to be raised along with the homework, rules, & expectations.

Good luck x

thanks so much marymary, it's good to hear that your ds went through similar and came out the other side.

Worrying about something subconsciously sounds likely then.

thanks justabout, I don't know anything about melatonin - do you buy it over the counter?

DS1 (10) is having real problems sleeping at the moment, even his melatonin isn't working. He is worrying about school in general, but mainly the transition to secondary school next year. I am just sitting and talking it out with him, but if it goes on much longer I'm going to have to try another approach. He is currently awake until about 2 in the morning :(
Melatonin is prescribed for DS by the GP under guidance of the hospital, I don't think you can get it over the counter.

ok, I will look into melatonin. He has a dx of Aspergers but we've never had any particular medicines or medical interventions for him. It seems to have come out of nowhere. I want my happy confident lad back

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I am sure this will pass, they just get themselves into a cycle and almost talk themselves into it. You can get phenegan over the counter, it may be worth just trying calpol or something like that first.

My DS is currently worrying about the food they will give him on a school trip that takes place next July!!!! Bless him, as much as we long for him to be chilled and relaxed its just not always the case and we love him more for his quirks!

Greensleeves, My ds (9) has had the same thing. He says when he is asleep everyone can see him, but he can't see himself. He will keep himself awake until 2am talking about what he feels like (and keeping everyone else awake) and then says he is too tired for school. This seems to go in cylces and is particularly bad at the moment with the return to school. I don't really know what to suggest, but wanted you to know you are not alone!

Sounds familiar all right! The usual thing for us is DS worrying or "just knowing" that he is going to get a nightmare so wont go to bed. Most of the time he wants me to sit with him whilst he goes to sleep and my husband insists that he is just milking it for want of a better word, he is very emotionally needy still for his age but I accept its the way it is!

It does go in fits and starts usually when a change of routine has happened or times of worry and there is no magical cure, tried warm baths, relaxation techniques etc.

You are not alone :)

it's oddly a huge relief that others have boys of similar ages with exactly the same problem! I expect he'll be utterly knackered when he comes home tonight so will try warm bath and talking, then talk to dh about trying phenergan and melatonin.

melatonin is prescription only in the uk, but we have been known to, erm, give a good whack of antihistamine based whatever to simulate the same effect.

i'd say back-to-school subconscious stress, and i probably would opt for the easy route (meds) to break the cycle.

here, it's the girls that get into this cycle. ds1 is 10 with asd traits, and largely oblivious. nt dd1 and dd2 with cp will quite happily moan and wail all night about their difficulties getting to sleep. particularly with dd2, the more you discuss it, the more she frets.

ok he has gone to bed with a dose of phenergan, so fingers crossed for a peaceful night. He looked terrible this evening and just kept losing track of conversation and bursting into tears. It's very worrying seeing him like this .

DS1 also talks about feeling discombobulated. For him sleeping in the spare bed (different environment) helps. Also, when he was Yr 5 sleeping in a sleeping bag, which made him feel safe, or when he was really upset he used to wedge himself on the floor between the radiator and the spare bed. On really bad nights he would sleep in a sleeping bag on the floor in our room, although this was a last resort. Don't know if anything like that would help your DS. Also had a variety of squeezy things (balls etc) which he could take to bed with him.

I also find that my DD sleeping in the same room on really bad nights helps no end, sure its the extra comfort factor that helps (when he was a toddler he had to sleep in our room as he had severe night terrors).