AIBU to ask what you think of Tourettes and what you know about it?

[Tourettes123]

Its like 2 hours off awareness month, so thought I'd kick off the month with a simple post first off.

During the month I hope to educate as many of you as I can.

So, what do you think of Tourettes, and what do you know about it?

Honest opinions welcome.

Sorry to miss the point, I remember another of your very informative and interesting threads, but aren’t we about halfway through a month right now?

Awareness month is 15th may to 15th of june. No clue why it starts half way through a month but there we are.

sorry name change fail lol

Plenty. I have two children who suffered it.
Its very very complex and often misunderstood- appreciate you trying to educate people.

I know they have tics, not just verbal but physical too. That's about all I know. I know not everyone has the same tic, though I guess I've only ever seen swearing tics on TV.

My understanding of it is that only a small amount of people with Tourette’s actually swear.

it can start at any point in your life.

you can get tics that are really difficult to control

nerves and feeling anxious make tics worse

I think it's a form of obsessive compulsive disorder which is related to anxiety but happy to be corrected.

Plenty, my son has it.

I find the recent tik tok fake TS or "tic tok incited" TS very hard to bear. My son has been truly suffering with this condition since less than 5 years old and has physical and emotional damage from it.

But that's ok, school knows that it's all because of tik tok and he just needs to go off social media.

He's 10, he's never been on tik tok. He has a neurological condition and I don't know about you but I've spent thousands on private neurologists and CBiT practitioners (because NHS has no idea what to do with this condition) who actually treat it like a real condition and not a viral craze.

And no, he doesn't swear. Man, tired of that question.

I'd love more info.
My eldest has always had a couple of tics. They come and go and change. If attention is draw to them they worsen.

We first 'saw' them when she was around 9. She was flapping her arms, she said it was because her armpits were sticky but it was a consonant thing.
Over the years this disappeared but others came to the front.
Head tilts, mouth movements, squashing her nose with a hand, wrist movements, rhythmic breathing.

Quiet times when we're watching a movie they are most obvious but we can use distractions like sewing or macramé help stop them.

We're not sure if this is Tourette's and whether we need to get a diagnosis or not.

Given that talking or making her aware we have noticed the tics makes them worse we currently feel that going for a diagnosis could make them so much worse.

Right now the tics are not affecting her life that much, no one at school has noticed.

Few yrs ago I had a colleague with Tourettes. I learnt a lot then. His was a lot more disabling than I knew, at times like epilepsy. It could be hard not to turn his outbursts into banter, better to bite my tongue & let his brain settle down. I got a sense after a while what could kick him off.

What I think of it? I wonder how much support people have and how much anxiety and stress it must cause people.
What I know of it? Not enough. What causes it? What can help?

I know it's not always verbal tics and they can't be controlled. I think they can be made worse in times of anxiety. I have heard of "tic attacks" where the tics keep on coming without a break for quite a while and can be exhausting and possibly dangerous?

I watched big brother the year Pete was in it. Thats all the information I have.

I don’t know anyone with Tourette’s (although I know not all tics are obvious so maybe I do). I remember a bit on a documentary about trying to hold back tics making it worse. Also that for some people the urge is to the most inappropriate thing.

only enough from being around the SEN board to know that experience will vary widely in the way all conditions affect people and whether they regard things. Also the resources vary that the person with Tourette’s, their families and friends have both emotional physical and financial and area (area not necessarily a rich/poor area but whether there happens to be a hospital specialist or a teacher interested in that condition in a local school.)

Yeah, only around 10% of people with tourettes have coprolalia (swearing and inappropriate phrases and words).

It’s a neurological disorder so not a type of ocd but you can get tourettic ocd, though I don’t really know anything about that.

Honestly? I don't really think anything about it, other than that it must be quite hard for people to manage because I think the condition is often misunderstood.

I don't know much about it, I'm afraid. I know that people with Tourettes often (always?) have involuntary tics. I know that it isn't just about the stereotypical swearing. I don't know a great deal more than that, though. Happy to be educated.

It reminds me of something that happened to my mother years ago, she was standing next to a woman in a shop who kept muttering ‘cunt, cunt’. My mother was wondering if she had done anything to upset the woman but then she told my mum that she has Tourette. Although honestly speaking, we had a bit of a laugh about the situation when she got home, we both really felt for this lady as it must be hard for her to constantly have to explain what’s going on and no doubt some people will react with fear or anger towards her.

It sounds like it has potential to be tourettes, but obviously I can’t say she does or not. The diagnostic criteria is two or more motor tics and one or more vocal tics (which includes breathing tics) for longer than a year.

not sure whether this fits for your child.

as for getting diagnosed, that’s something only you can decide. I only wish my parents had noticed when I was younger, I had mild tics as well as tics that could easily be passed off as just being disruptive. But I wasn’t diagnosed till 25 when they got much worse when was about 20/21, I think it was second year of university. It’s hard to decide, especially if they aren’t too obvious,

That people with Tourette's have tics, which are involuntary. Some are physical, some are verbal. You can have both. I know not that many people have the type of TS that makes you swear, although this is what a lot of people think TS is.

It seems to me, from an outsider's perspective, that a few people that have Tourette's also have another thing (can't think of the term!), like anxiety, ASD, ADHD etc. Not sure if that's the majority of people with TS or just lots who are on SM or interviewed on TV.

I am lucky enough to have been at conferences, discussions and seminars with the fantastic Jess Thom and seen some of her theatre work.
www.thealbany.org.uk/people/artists/jess-thom-touretteshero/

She has a great way of establishing how Tourette’s is part of her, her life, and the way she communicates, and has done loads to raise awareness in theatre.

Good luck with Awareness Week!

My daughter has it. Something people probably don't know is that it's"catching", not in the sense that you can get it from people if you've never suffered from tics before but if you are prone to tics at all, seeing or being around people with tics will make it worse. My daughter went to a residential event run by a charity for teens with Tourettes and when I picked her up, one of the kids would shout out something and all the others would echo it. She was ticcing much more than normal for the next couple of days and then it subsided.

Re online presence, I think there's a very fine line between normalising tics and reassuring kids that others are going through the same thing, and glamorising and encouraging them.

I don't blame my daughter for her tics but I don't think pretending it's acceptable to not attempt to suppress them is helpful for anyone who wants to hold down a job, and have normal relationships with people. There are types of therapy to help learn how to teach your body to bypass the urge to tic but the person has to actually want to want to work at it. Some of the rhetoric out there about just being yourself and everyone else should accept it is unhelpful. Realistically it is going to restrict your opportunities in life if you go around constantly swearing.

DD developed it around 2 years ago as a result of PTSD. Currently trying different medications to see which if any help but its very hit and miss with the NHS. She is lucky that the prescribing nurse at her practice has a personal interest in tourettes so is always happy to talk to her and review how things are going.

Biggest worry at the minute is getting a job. Just looking for something as a student for either summer or part-time and ongoing but no one is interested as soon as she tells them she has tourettes.

I saw The Mum who got Tourette's on C4 ages ago, learnt a lot and have done some reading since so I know a bit. DD has some tics but they're not massively noticeable so we haven't sought diagnosis as yet, just keeping an eye on it for now. I remember your last thread too OP, I learnt lots from that too so thank you for continuing to raise awareness.