Feeling so rubbish right now - Aspergers dx and poss Tourettes

[JillMLD]

Hi
I am a lurker and occasional poster on here.
Nearly 2 weeks ago my DS aged 6 1/2 was diagnosed with Aspergers.

Although we were expecting it because the specialist had mentioned it at a previous assessment, my husband and I are still both in complete shock. I was totally 100% convinced they would say he had ADHD and that the Apergers things was a mistake.

He also has terrible tics that have been going on for the best part of a year now, and the paediatrician has referred us to a psychiatrist (CAMHS I presume ???). The tics are motor and vocal and happen every day pretty much all the time except when he is very engrossed in something, but with the Aspergers he finds it hard to concentrate and background noises (ie his 2 younger sisters) distract him so he doesnt get engrossed in much! So what I mean to say is he tics all the time.

I am barely dealing with the Aspergers diagnosis. I am absolutely petrified that they will also diagnose Tourettes, because what else could it be ? It dominates his speech at the moment, he can hardly get a sentence out. Tonight doing his school reading he was able to tell me for every sentence how many times he ticced that time. Obviously at 6 they do some loud reading at school, and he says he holds his breath before his turn and then says his bit really quickly. I am so proud of him for trying to develop his own ways of dealing with it.

When we first suspected Tourettes I cried for 6 hours solid that evening. I was a mess the next day. It feels socially much harder to deal with than Aspergers. There is a lot of knowledge about and exposure in the general population about Aspergers nowadays, I know several Aspergers kids, but Tourettes seems much more of a stigma. I dont know how we will get through it. Can anyone help ?

Feel I need to answer thoug no personal experience but you are so Could your ds be stimming...repetive actions/sounds or words?

Can ds be redirected and it stops? ie give language to say instead of verbal noise...ds does 'eeeee' when excited or runs...I say to ds, say 'I'm running' etc it does stop it for a minute or two.

Does he do these 'tics' all the time or only at certain times i.e ds ony does 'eee' when running or excited so not a tick as it would be all the time...ds also does weird head movements when concentrating for long periods....but not other times.

Watch your ds to see what he does and when (see if trigger/situation) as defo would just do it all the time if TS. Keep a diary ..this will help the assessment for ds with psychiatrist of behaviours.

Could it be sensory problems is another question?

You could get cognitive behavioural therapy for ds to teach him to manage tics better I oce saw a man on utube I tink it was he had tourettes and drumming used to put his body and mind back into sinc.

Hope you have news soon.

My son has Aspergers and vocal tics which came on really badly when he was in Yr 4, brought about largely, we felt, by stress at school.
I too was worried that it might be Tourettes but our Community Paed said "Tics come and go" and didn't seem to think he needed another diagnosis.
He is now 15 and he still makes all sorts of noises when he stressed. He does some amazing ambulance noises as well as squeaks, lip sucking raspberries etc, and the Paed was right, they come and go.
We have learnt to live with them, and the school hae given him the option to leave the room if he has to make too many vocal noises. The school he was at when he started ticcing though dismissed it as "making silly noises".
Our feeling was "Is there anything to be gained by having him assessed for Tourettes?"
It could quite easily be that your son's noises are a by-product of his Aspergers. If he is going to receive sympathetic treatment without another diagnosis will it help?
We did find that telling D/S to stop just makes it worse.
Don't know if this helps but at least you know you are not alone.

Hi
You have have tics with Aspergers - it doesn't mean he also has Tourette's.

The problem is differntial diagnosis - i.e. differentiating which of the 2 possible conditions may be responsible for the tics. TBVH it's not worth worrying about. It's just as much a symptom of Aspergers as Tourette's and any differentiation is purely academic (and very subjective)

Thanks for your replies.

colabottles - I hadnt heard of stimming until recently but it's definitely tics, he does it all the time and there is not trigger as such. They have been happening on and off since last summer, although my Mum (who lives overseas and harldy sees him) remembers him doing then earlier. Its worse if he is tired/stresed/bored. But there is never an hour goes by that he doesnt do it, and its pretty much constant when he's awake.

camper/august - I know what you're saying, a diagnosis wont actually change anything in terms of his tics and ability to suppress them, but school arent convinced that he cant help it and arent being overly sympathetic. When we got the Aspergers diagnosis they did a complete about face - prior to it they just thought I was an over worrisome parent and that he was just a distractible wee boy but now they are all full of support - which is great, dont get me wrong. So I think the same applies for the ticcing - they needa professional to say "he cant help it". The community paed wouldnt diagnose a tic disorder and wouldnt justify it as part of the aspergers. Presumably because its so bad in its own right ? It definitley helps to know I'm not alone, I do feel a bit like the only parent in the world with a child who constantly makes random crazy noises.

Its horrible for his when he holds his head still to read the neck jerking makes him lose his place, and when he cant get the words out for aking noises, my heart goes out to him, poor wee boy.

What about some OT with sensory intergration. My daughter does it and they give her pysical things to do instead when she is stressed ie pushing and pulling various objects. Skipping throwing a ball. Sounds odd but it really does work and it helps them to calm down when they are over stimulated especially in a busy classroom. I'm a big fan of it for ASD children as it helps in so many ways. Good luck and I'm no expert but it does sound like tic rather than Tourettes.

daisysue - how do I go about getting OT ? Also, I'm interested to know why you think it sounds like tics rather than Tourette's ? Tourette's is diagnosed by motor and vocal tics occurring for more than a year with no consecutive 3 months tic free, with tics waxing and waning and as one tic goes away another comes and cannot be attributed to any other condition. He has all of this. He doesnt just do it when stressed, he does it all the time. aarrgghhh I just dont know!

Hi Jill - you might be able to access OT through your GP or paed. It could be a very useful service for you to link in with, particularly with Daisysue's suggestions - the music idea is good as well for some reason it can stop tics during the time the instrument is being played.

It all sounds very overwhelming and coming to terms with it all and doing the best thing possible all adds to the stress of it all!

My ds (hfa/adhd) tics and twitches and they have come and gone, we are back to snorting again, although facial tics are much less atm x

You can just call up your local OT service and ask them to come and visit you DS at school. Say the school recommended it. It has worked with me although I do use a private OT who has been invaluable. ARe you close to Surrey if you are I can recommend the OT we use. She has a sensory room with swings, balance balls etc, if not I'm sure you would be able to find one local to you. It's fab and my dd loves it. She is also brilliant at explaining why certain things have to be relearnt so they can move on to the next learning level. So for instance if they haven't learnt to balance on one leg they will never learn to run effectively (don't know if that's true just using it as an example). google sensory intergration therapy. It may help.

thx again (sorry dont get a chance to come on much). Will definitely think about it all, gosh so much to take on board, its like speaking a whole new language. I am currently in the throes of applying for DLA and am losing the will to live .........

Thx again for you ideas
xxx

Hi

When a childwith ASD has frequent tics it's called a comorbid tic disorder - comorbid meaning that it coexists with the other condition (ASD). It's well known that ASD/Aspergers children also have tics or stims (similar to tics in that they can't control these either).

if it makes you feel any better ds1 has Tourette's and Asperger's - the TS was diagnosed first and the ASD dx cam afterwards - when ds1 was your ds's age the tics were terrible - loud, constant, really in-your-face, however they've diminished remarkably over the years and now (he's 13) they're barely noticeable - I can see them but I don't think many other people would realise he's ticcing and most of the time he suppresses them until he's in private

he's in mainstream, academically selective secondary, doing incredibly well - top sets for everything - good at sport, popular, and yet when he was your ds's age all I could see in his future was despair

hang on in there

ps we had DLA at the higher rate for years as he was so difficult to live with, however the last lot ran out a year ago and I couldn't fill in the renewal forms as he just didn't need it anymore

Hi
my 6 year old son has just had the same diagnosis and i share your worries and concerns. I dont know anyone else in the same position as us, so if you would like to stay in contact that would be great. We are finding a lot of supportive from the medical field and OT useful to a degree but the schooling side worries me the most. Currently things are ok but they are very fearful and negative about the future, which is not what we need! i have found the tourettes action website very useful.