I have severe Tourettes (swearing etc) AMA

[wombatsandaplant]

I have severe tourettes, mainly swearing, with lots of random noises and words and phrases. Plenty of motor tics too.

@CrazyHorse

I did suppress spouting the one interview I’ve had and then after I got the job I never told them but they also never cared about the tics (I was a Postie). I do t take trains or buses so can’t comment there. But I don’t apologise unless I offend someone, I usually just say I have Tourette’s, rather than sorry I have Tourette’s. I’ve come to believe I shouldn’t have to apologise for something I have no control over. I apologise to people I offend purely out of politeness rather than me feeling I should have too.

@GNCQ

My employment opportunities haven’t personally been affected but I took a job where I’d be outside most of the time so it wouldn’t matter so much. I imagine depending on the job it will affect me but as I can’t currently work due to mental health issues it doesn’t affect me at the moment.

I think with the swearing and inappropriate tics it would be difficult but I think it just depends on the job you take. But I was watching a tourettes documentary from New Zealand and the woman had all sorts of tics similar to mine and the person interviewing was cool with it and gave her the job. I guess it really just depends on the person interviewing too. I think people in the uk are scared of things like tourettes.

There was a show called employable me and it had a few people on it with Tourette’s. I know one guy ended up being a photographer as he couldn’t get a normal job.

I think people in the uk are scared of things like tourettes.

This is so true. There has been a few TV programs over the years about people with Tourettes, which has been good at highlighting that the condition exists, but I think there's still a lot of misunderstanding. Again, thank you for this AMA

@CrazyHorse

Yes there is a lot of misunderstanding. I hear so many jokes about it, like I’ve developed tourettes (when they’re swearing a little bit cos something has annoyed them). It’s so annoying. I just want more people to know about tourettes and how it presents and be more understanding.

I love the documentaries, John Davidson is very good at raising awareness around tourettes. I just wish they showed different sides of tourettes and showed more women, and how it’s not just swearing but can be as simple as noises and movements and also can be inappropriate words and phrases as well as swearing.

Hi op I've just found this post when I searched. My 7 year old has been grunting for over a year, and this year has started twitching his nose, then more recently flinging his head back. He does say inappropriate things but I have literally only just thought that it might all be related! Do I take him to the gp? It doesn't seem like any point really if there is no cure?

@TheVolturi

There is point in taking to him to the gp as it could get worse, or people might start noticing the tics, also it would allow him support in school if he has a diagnosis.

There’s no cure but there is medication to help (doesn’t work for everyone though) and it would allow support for him. You could wait and just monitor for now. It really depends on how he feels about the tics, he might not have really noticed them. You could wait and see and if they get worse go, or be preemptive and try for support now.

If it were me I’d take him, but I wish I could have had a diagnosis at a younger age.

Thanks so much for your reply, I think I will book him a gp appointment, no harm I suppose, I'm guessing they will want to monitor it for a while anyway so the sooner we go the better. I am going to keep a log of how regularly the tics happen for now.

Great thread

My daughter also has Tourette’s so it’s great to see more and more understanding.

I follow a few Tourette’s pages on Instagram and it always seems to be fun flinging eggs around and having a laugh, I don’t think people really understand what a truly awful condition it can be.

Yes, we do have a laugh, we very much encourage her to try and have a bit of a sense of humour about it, for the sake of her own mental health as much as anything, but it can also be debilitating, painful, frustrating and downright embarrassing.

@TheVolturi. My DD started with “simple” tics like this which then escalated to the more complex verbal and motor tics. We saw our GP who referred us to a paediatrician who then referred us on to a Paediatric Neurologist. She had to have had the tics for a year. It has been quite helpful to have the diagnosis, DD isn’t medicated as the Neurologist felt the side affects would outweigh any benefits but we’ve had a series of nasty, self-injurious tics lately and tics which have left her unable to walk so they are now considering it. The diagnosis does give her an ECHP at school, she has access arrangements for things like exams (her tics prevent her from writing sometimes so she has a scribe)

Hi, OP, thanks for the AMA.

I was wondering if your verbal tics necessarily are said, or if you're online, you ever get the urge to type them? Or maybe, you're in a Zoom meeting, your mic is off and you get the urge to tic. Do you say it when no one can hear it, or do you turn your mic on?

You're so right @alloalloallo

One of the women in my group has a daughter who can't use knives as she starts trying to stab things, has started repeatedly punching herself in the face, and has to be held back from jumping off if they're anywhere high. It's so much more than having a giggle because a 10 year old said 'fuck' in the classroom.

@alloalloallo thanks for your response, how old is your dd now?

When you say something, is it always what you have been thinking ?

@InTropicalTrumpsLand

Yes I frequently get typing tics. Only ever on instant messaging platforms like discord. But they can get out of control quickly. I would just tic it, I wouldn’t turn the mic on, the tic would happen regardless of whether the tic would be heard or not.

@DinosaurDiana

It’s never what I’ve been thinking. I have tics relating to Hitler and supporting him like heil Hitler but obviously I do not support him at all. It’s often completely random or triggered by someone talking about Germany or vaguely related things. This obsviosuly changes depending on the tic with the things that trigger it.

[quote TheVolturi]@alloalloallo thanks for your response, how old is your dd now? [/quote]
She’s 15.

The simple tics started to appear around age 10. Looking back, with hindsight, maybe earlier.

Can anyone tell me how it possible to tell if a child is in control of what they say, I mean how to tell if it's a verbal tic?

@TheVolturi a few things stood out for my DD.

1. She wasn't aware she was audibly saying swear words until I pointed it out after a young kid at her school overheard her and told on her
2. It's very repetitious and doesn't sound like natural speech, it comes out like rapid gunfire!
3. It often explodes out of her when she gets home as she's been trying to hold it in all day. Similarly if she's sort of semi-engaged in something (bloody Roblox!) and her mind is drifting it'll increase. Much better if she's actively doing something.

I don't know if that's helpful but that's just what I've seen in my own DD.

My DD has a tiny little head jerk before she verbally tics and her voice is slightly different - kind of flat and toneless

She has no control over what she says - doesn’t know what she’s going to say until she says it and it’s almost always the most inappropriate thing she could ever say.

She also gets stuck in a loop and will constantly repeat the same word, not always a swear word

With the physical ones she often feels it coming and, for example, will have time to put a cup of tea down

@alloalloallo - It's exactly the same for my DD

The last paediatrician I spoke to told me she was just saying what was in her head. DD got quite cross about this because she say her tics aren't what she's thinking, and she doesn't know what is going to come out, only that she is going to tic. Many medical professionals know very little about Tourettes it seems.

Thanks both! I am going to watch him closer, he does come out with very random things and usually in a shout, for a long time we have just thought this was him being silly/naughty, and it may well be, but along with the motor tics and the throat clearing, it may not.
I don't want to directly ask him if he has control of what comes out of his mouth, in case it gives him ideas!

My username gives you an idea of what my DD says. She had no idea she was saying it out loud, she cried her heart out when I had to sort of break the news to her.

Do people with tourettes sometimes not recognise them happening at all? Do they think someone else is saying them? Or is it more similar to a "blackout" where you just don't remember? Maybe there are different experiences for each individual
Sorry for so many Q's it's just interesting.

@GNCQ

Usually in younger children it’s more common that they don’t realise they are ticcing, as I think it’s because something hasn’t quite developed fully. Whereas once you’re older the thing has developed so you do realise. But I think sometimes it’s also so normal to you after a while so you don’t realise so much.

I suppose so long as your close friends and family understand tourettes it doesn't really matter what anyone else thinks of the tics.
I hope you feel loved and accepted

@GNCQ - I think it's really important that there is more public awareness about tics and Tourettes, because it does matter if people don't understand, and think negatively of someone if they tic.

My DD is about to take a practical music exam. If she walks into exam the room and says "Hello you fucking bitch" it won't go down well. Obviously we'll have explained beforehand she has Tourettes, but I have no idea what the examiners understanding of Tourette's is. The paediatrician's understanding was poor, so my guess is the general public understand very little.