DS making unconscious noises out loud -- how to handle?

[mancmum]

Would appreciate some advice on this ... my DS (5.6) has recently started making some odd noises that he is really not aware of... when he is watching TV, reading or playing on computer, he tends to make a kind of "uh uh uh uh" -- not exactly but can not explain it... it sounds very odd and i have asked him to stop but he really is no aware that he is doing it and so gets cross when I ask him to stop..

I am very concerned about it as it does make him seem a bit odd -- should I take him to the doctors or could it be something transient? He is a bright happy NT boy who has never exhibited any weird behaviours before...

[101StressPuppy]

I used to do that for a bit when I was a kid. but mine was more of a 'hmm' kinda throaty noise. It stopped after a bit, just a weird habit

[101StressPuppy]

sorry not much help to you though is it

[mancmum]

no that helps... you grew out of it!! Thanks!!

[Miaou]

Mancmum, I grew up with a girl who had Tourettes syndrome - she started making noises at around this age. She didn't realise she was doing it and was completely unable to stop. However if placed under stress it did get worse. She is NT in every other way though.

Sorry may not be what you want to hear but I would have thought this was a possibility. How long has it been going on?

[mancmum]

been going on for about 1 month but is increasing... OK I had considered tourettes so will get to the doctors.. thanks for being so honest!

[Miaou]

mancmum I knew her quite well from the age of 5 to to about 20 or so - I was good friends with her younger sister and she was the year above me - so I can tell you a bit more about it from an "observer" pov if that helps, just ask.

[womba1]

mancmum.. i used to do this for a bit too when i was much younger. It used to drive my Mum mad and although i kind of knew i was doing it, i used to get really embarrassed when asked to stop. On reading your thread, i asked my Mum about it and she said i did it more when concentrating on something or if i was overly tired.

[Jimjams]

you won't get a tourette's dx yet- the tics have to be present for something like a year (may be 6 months- can't remember but much longer than a month). My son has many tics (he's autistic- probably tourettes as well although I've never nother getting him dxed as there's not much they can do) and they do change all the time. Some are more odd than others but they never seem to hang around too long.

i remember doing some weird thing with my nose when I was about 6- used to drive my mother to distraction.

[Miaou]

Just had a look at the tourettes website and yes, tics have to be present for at least a year (along with other symptoms they look at) before they will diagnose.

However I would still go to see doc, mancmum (even without ds?), just to get their take on it and to find out if there is anything you could/should be doing. I'm a great believer in more info = less anxiety!

[lolliepops]

my db used to do it when we were kids he would drive me and my mother up the wall. it was always when we were watching tv someitmes he would shout some words, sometimes it would just be noises. he to used to say hee wasnt awear of it he must of grew out of it, i dont think he does it now!

[mancmum]

thank you so much for all this advice I think I will go to the doc's without DS just to get some advice... I have just had a very long chat with him about it and he is just so unaware he is doing it, I need to reduce my anxiety about it Miaou you are spot on there... I did check out the tourettes sites and he is not showing anything else on the list... so I am hoping it could just be one of those things that kids do to drive us mad... but there is something niggling me that I need to get it checked out...

I have noticed he does do it most when he is on his own and a lot in bed so could be like Womba... oh am going in circles here... am making doctors appt now!!

[Davros]

My DS does tick just about everything on the TS checklist !! I expect to be getting this extra dx on 22 June when we next see the Paediatrician.
Mancmum, if you see your GP (I agree more info = less anxiety), I doubt s/he will be able to do anything other than refer you to someone else. So I would suggest you ask for a Clinical Psychologist. They should be able to come up with ways for you to manage/redirect/substitute the behaviours or for your DS to learn to self manage. Or it really is just one of those short-lived annoying behaviours that will go away given time.....???

[Miaou]

mancmum and davros, if it is of any help to know, my friend's sister has learnt how to suppress many of the tics that she suffers from over the years. I last saw her about 8 years ago (she would have been about 26 then) and tbh it's only after being with her for a while that you would notice that she "twitches" a lot - and given how severe her Tourettes was when she was younger it's a remarkable move forward that she has made.

BUT of course it may be nothing to worry about, just a "phase" that he is going through.

[Jimjams]

sorry to hijack...

davros- do you think there's an advantage to a tourette's dx- i know I've asked you this before an ended up thinking there wasn't. I keep meaning to mention it everytime I see the paed and then keep forgetting. Ds1 fits the criteria as well, but I kind of thought as there won't be anything they can do I may as well forget about it.

Also when does a tic become a stim? (or vice versa) I have trouble separating out the 2- is a tic involuntary whereas a stim is done for pleasure? I think a lot of things I've thought of as stims are actually tics. For example I can hear him youwing upstairs at the moment which means he's kneeling down arching his back- I've always thought of it as a stim, but actually he doesn;t seem to enjoy it (not like throwing things and watching out of the corner of his eye iykwim) and seems to have very little control over it. SO perhaps its a tic....

sorry for hijacking again.

[Davros]

I know what you mean about differentiating stims from tics and repetitive behaviour, oy! The tics we've seen develop in the last 1-2 years are different in that you can't see any "enjoyment" or even feedback iyswim. We've had shrugging, twitching, touching, very repetitive and regular vocalisations. Its is very hard to tell one from another and I do think they can overlap but the tics are definitely totally involuntary and very odd looking, not classic ASD, i.e. not like the other kids with ASD I know. The benefits of dx for us are

• Why not if its the truth?
  
• Helps others, school etc, understand and accept changes and developments in behaviours, all of which really fit the tourette profile
  
• Decisions about medications, esp as all the wonderful behavioural input we've had is not making an impact on these behaviours and this sort of explains it
  
• Decisions about seeing new/other professionals
  
• Useful when DLA comes up again or for other support (AND it is genuine)
  
  HTH

[mancmum]

no worries about hijacking... it is all useful information for me... so far DS has no physical tics.. it could just be something he is going thru but then some kids do go onto to develop TS and there is no reason why it can not be my DS so I realy want to check it out... this has been really helpful making me see I do need to do that with my GP -- will discuss the clinical psyhcologist on Tuesday

[Davros]

Gp definitely first port of call but they are unlikely to be able to do much other than listen and refer, that's what they do I suppose! Keep us posted... Bet the little sod will stop doing it out of the blue

[Jimjams]

thanks davros- I'll mention it next time we see the paed. I think a lot of the thngs I've been thinking of as stims are tics- definitely worse when anxious or overloaded, althugh I think more common at home than school- so must be able to supress to some extent (not the yelping etc, does that everywhere- I'm thinking about the arching back thing he does).

Actually I want some of his dx rewritten as his dx includes "megacephaly" and he doesn't have that! His head is large, but normal range and it's just familial, of no relevant to autism (he's been tested for frag X). I'll try and remember to bring it up next time.

Keep us posted with how you get on....

[mancmum]

will do -- have appointment on Tuesday PM with paediatric GP at local practice... not taking DS but was thinking I might try to tape the noises to take with me?

[Davros]

I think that's a good idea although it will be a bit weird to do! Also good to go to appts without the little darlings sometimes. If GP wants to see him then that can still be done but you can describe what's going on without being distracted.

[happymerryberries]

We have children with Tourettes as a Dx statemented. Many of them ase also ASD or ADHD.

That said even a 'stand alone' dx can be helpful in getting the school to be realistic about the tics etc. In the cases I have seen the children tend to fall into the small percentage who use 'challenging' language in an involentary way. So it is essential that the staff understand the issues.

[Davros]

Did you go mancmum? What happened?

[Davros]

BUMP

[Jimjams]

how did it go?

[mancmum]

knew I would forget to update this!! thanks for remembering -- DH went to see the GP without DS and GP was excellent - he asked DH 1000s of questions about DS generally and very specific questions about his behaviour... he thinks it is a "Habit Spasm" that is apparently quite common in kids DSs age (I have never heard of them..) He reckons it is something that DS will grow out of but we need to check it every week to make sure it is not increasing...

Habit spasms are something in between conscious and unconcious behaviour so that child is not totally aware they are doing it and so can not stop it but are at some level under their control and so will eventually stop it or move it on to another habit...

Thanks for your support in this...