(sorry long post) Is this ASD shutdown or do I need to get it checked asap?

[moosemama]

Sorry, this is yet another long one from me, but I think you would need the progression of events to understand my concern/s.

So, ds1's teacher came to see me the other week and said he seems to drift off and not hear what she is saying on a fairly regular basis. This means that he is always a few steps behind the rest of the class. I know from experience that he can be spacey and drift off sometimes and assumed this was a comfort/self-protection type thing, in the form of a sort of ASD shut-down when things get too much for him.

I then spoke to ds about it in a very careful way and he told me that he does daydream sometimes, especially when the lessons are boring , but that recently he has been going off into what he called a 'blank space' and when he, as he put it 'wakes up' he is usually in the middle of getting told off for not listening. He said this has always happened but is happening a lot more recently.

I think I then witnessed it for myself a couple of days letter. I went to fetch ds2 from the infants playground and hadn't realised that ds1's new classroom overlooked where I usually stand. He was sitting near the window and saw me straight away, so I smiled and waved, then indicated for him to turn round and concentrate. Just at that moment the whole class stood up and faced the front of the class - including ds1. I decided to move a bit further away and not look again so he wasn't distracted, but when I did take a peek, the rest of the class was still standing facing forward, but ds1 was about 4 feet away from his seat with his forehead leaning on the window, slack jawed, just staring. It didn't last long and all of a sudden he looked up, looked shocked and dashed back to his seat.

I asked him about it when we got home and he said he didn't know how he got to be standing by the window and his teacher was very cross with him, so he got told off.

Alarm bells started ringing quietly at this point and dh and I decided to keep a close eye on him to see if happened at home and book a gp appointment if we witnessed anything similar.

Fast forward to Wednesday this week. Ds1 had been off since the previous Friday with a vomiting bug and went back that morning. He was absolutely fine, fully recovered, but stressed about going to school and we had tears and repeated refusals to get in the queue in the morning.

He had numeracy second lesson and when he came home he said "Mummy, I fell asleep in numeracy today." I thought he was exaggerating or that he'd been messing around with his friends, but he was so matter of fact about it, that I asked him a few questions about it. The conversation went as follows:

Me: "Did you? How strange. How did that happen then?"

Ds1: "I don't know, I was just sitting there, Mr X was handing out the homework and then I woke up and I was in X's (the girl he sits next to's) lap. D (his best friend) said I had been properly asleep and all the children on the table thought it was really funny."

Me: "Didn't Mr X notice?"

DS1: "No, he was giving out worksheets on the other side of the room and facing the other way and anyway he might have thought I had just bent down to pick something up because my head was below the table."

me: "Didn't X push you off her lap or shake you to wake you up?"

Ds1: "No she was too shocked and afterwards she said I was too heavy to move."

me: "Oh dear, it sounds like you are still a bit under the weather from your bug, you'd better have an early night."

Me again: "Oh, by the way, what woke you up?"

Ds1: "Nothing, I just woke up suddenly and everyone was leaving the classroom for break time."

Soooo, is it me or is that pretty worrying. He was apparently heavily 'asleep' for a short period of time in a lesson at school - (and on top of all the other worries, his teacher didn't even notice!). It just doesn't seem like ds, he takes hours to fall asleep and can even manage to keep himself awake on a 12 hour journey in the campervan, so it seems unlikely that he would just fall asleep in class.

Now - scarily, we do have family history of epilepsy, firstly my dnephew (DH's brother's son) who is also ASD - although his parents declined assessment, was found to be having absence seizures after he started wetting himself several times a day at about the same age. By the time they diagnosed and treated him his seizures had progressed and were much worse. Also, MIL has been under investigation, as she has been having odd 'turns' where she just turns into a statue and is totally non-responsive - the longest one of these lasted for over 20 minutes! The professionals were baffled to start with as she didn't seem to fit any of the dxs and her EEG didn't show anything up. Twelve months down the line, after lots more tests and appointments, she has now been told she has epilepsy, but is in denial and refuses to take her medication.

We spoke to BIL about it and he said the 'blank spaces' don't sound like absences, as ds1 appears to be aware that he's had them. He wasn't sure about the 'window episode' though as his ds has never moved during his absences. The last 'episode' has happened since we last spoke to BIL.

I think we need to speak to the GP about it, but dh wants to watch and wait. I hear what he's saying, we have been pushing everyone on ds2's behalf recently and there is a lot happening both at school, medically (stomach and digestive related) and psychologically (anxiety). I don't want them to dismiss me as a paranoid Mum who is just overreacting, based on the fact that it has had to be me that raised all his other problems for investigation.

I would be so grateful to anyone who's got any experience of either ASD shutdown or absence seizures that might be able to advise?

I would get it checked out - isn't falling asleep unexpectedly called narcolepsy?

It might not be that at all, but it would be sensible to talk to a professional.

Thanks. He's only done the falling asleep unexpectedly thing once though - as far as I am aware.

I am worried though that he may have done it more times without realising and without it being noticed. I think he only 'found out' this time because the other children noticed.

I know it shouldn't matter, but I am so worried that the doctors are going to stick me on some sort of 'list' for raising too many problems with ds1. He seems to have had such a lot of problems and they never seem to get to the bottom of any of them satisfactorily.

think you should make a trip to see GP, you wont stop worrying unless you do and if there is anything and you leave it, you will kick yourself for not going earlier.

I would get it checked asap - there are seizures that you are aware of but cant do anything about. Sorry, but it does sound seizure related.

Yup, get it checked out. ASC type symptoms and some sorts of epilepsy are quite closely related because the same bit of the brain is responsible.

Keeping everything crossed for you...

Thanks, I know you are all right. Don't know why I am asking really - I'm scared to go and scared not to, but I know I have to.

Just asked him a bit more about when he 'fell asleep'. obviously he's not much help as he has no idea how long it was for etc. I don't think it can have been long though, as the teacher was just giving out the homework sheets and when he woke up everyone was starting to leave. He says he didn't know he'd been asleep until he woke up and found himself leaning on the girl next to him with his head in her lap! He's a bit about that part, as I think he's always been a bit soft about the girl he landed on.

Just wanted to update and thank you all again for your concern.

Have spoken with ds's gp and he is being seen tomorrow lunchtime (first appointment they could offer us). He had two more 'odd episodes' yesterday, one at school and one at home - although we didn't witness it, his little brother came to tell us he had 'just stopped' when he was on the computer.

Apparently the one at school was when he was just walking across the playground with his best friend and suddenly stopped. He said everything went blurry and faded out and he could sort of hear, but not properly - like everything was really far away. It sounds like he was aware of what was happening, but not in control - just sort of semi-conscious? As far as I know, this is the first time it has happened when he has been relaxed and happy with his friend/s.

Not really sure what to make of it all, but hopefully the docs will get to the bottom of it.

GP says they will refer him to a neurologist to get it properly checked out.

www.shutdownsandstressinautism.com/files/StressinAutism.pdf

My DS 5, and asd, also is having some unresounsive moments although he doesn't fall asleep as such. He is to be refered for an EEG.
But someone forwarded this to me, and it is quite interesting.
Sorry if you have already read it before.

Thank you genie, no I haven't seen it before - will read it once everyone's safely tucked up for the night.

He's come home this afternoon and told me about another two weird moments, that sound very similar to the one in the playground yesterday.

Its so difficult though, asking him the right questions without leading or worrying him iyswim. Am hoping the GP will be better at it.

He was describing the visual disturbance a lot more today and he did used to suffer from abdominal migraines when he was younger, so am thinking maybe ocular/opthalmic migraines might be the answer? We have epilepsy on dh's side and migraine on both sides, so either is possible I guess. I used to have severe migraine that was treated with Topomax (an epilepsy drug) in the end.

I'm still hoping that, as he is aware that he's having these 'episodes', that will mean they are not epileptic in origin.

Migraines are a lot less scary for me to deal with, as they aren't knew and unknown territory for me.

Thanks for that link genie. I read it last night. It doesn't really sound very similar to what has been happening to ds, but made interesting reading re the whole process and why shutdowns occur.

Went to the GP today, she listened to all the different episodes and said she didn't think they sounded like absence seizures, but would check him over anyway. Did all his reflexes etc then said she doesn't think there's anything to worry about, but she will write to the community paediatrician (who ds is already under for other problems) and ask him to look into it a little further. She did say that he might come back and say that its not his area of expertise and he would rather ds was referred to a neuro though.

So we are no further along, but slightly more reassured, although she didn't really make any suggestions as to what might be going on if it isn't seizure related. The only thing she did was mention that it could possibly be anxiety related, but that if so, it was odd that a couple of the episodes had occurred when he was happy and relaxed.

The consultation was oddly amusing actually, as in the midst of asking ds to do all these strange things to test his reflexes etc, she said "right jump on my examination bench" - so he did - literally. He climbed up there and started to jump up and down! Boy did she look shocked. I had to point out that, as he has ASD, he took her words literally and thought she meant actually jump on the bench! Gotta be fair to the poor kid, she was making him do a bunch of other weird stuff, why wouldn't he think she wanted him to jump on the bench as well?