To ask what you think of Tourettes?

[SchrodingersMeowth]

And what you think when/if you notice adults with tics? Do you laugh behind their backs? If you think they don't notice you?

Also - if you have tourettes or a tic disorder, what medication you take?

I had never heard of EDS before - just had a google - that all sounds like a lot of work OP, and you (and your lovely children) sound like you are coping admirably. My ex stepfather had a very prominent facial tick that after a short amount of time I simply didn’t notice anymore. In fact a tic is far less annoying than bad habits that people CAN help - eg cracking knuckles every 5 minutes. My XSF used to find his tic worse the more worried or nervous he was, so focusing on it doesn’t help (not that me saying that helps!)

I know movies play tourettes for laughs but I don't find it funny at all.

I've come across one person with it before when I was out shopping years ago. I'll never forget how embarrassed and ashamed he looked.

I have an (adult, 24) ds with ASC, EDS and Tourettes. He has full body tics. He uses valium when desperate but tries not to. Like you, holding them in results in problems. He too has had arseholes laugh at him on the street. On the other hand he has also had some very kind people help him when he's fallen and take him to hospital when he's needed stitching.
Hope your meds help you.

I went to school with the guy who was featured on Desmond Wilcox's show about Tourettes. He was a couple of years behind me in school and it was incredibly difficult for him. He has bravely, over the years, gone to talk about his problems in schools etc and now has a therapy dog, which helps him. I am horrified that people laughed - how could they do that? The lack of empathy towards disabilities is quite staggering and I really feel for people who have suffered with this and wish that there was something I could do.

Can I ask those of you with tourettes, what age did you start to show symptoms? When were you diagnosed etc. Is ADHD and OCD always combined with it?

As for opinion - I don't have a lot of personal experience with tourettes, most of what I know is from books/web/tv. I wouldn't judge someone who displayed tics, I may not behave as normal as trying to not show I notice. I think I'd be more focussed on me than someone with tics.

Not ignoring, will be back shortly. Gilead I feel sorry for your Son, the tics on top of the EDS are exhausting. Valium hasn't worked for me yet so I've just dropped it for the new med. It's so humiliating when people laugh and it actually makes the tics worse because you're so anxious
Will answer everyone shortly!

loopy, DS is Autistic, but doesn't have ADHD. He had minor facial tics and a few vocal (but not verbal) tics and developed the gross motor tics at about 17.
It's also important to know that the seemingly accepted picture of tourettes as someone with swearing/vocal tics is actually quite rare, coprolalia is only seen in around 10% of people with Tourettes.

I have sympathy.

It must horrendous and must have a negative impact upon people who could otherwise be and do anything. They must feel terribly anxious about it.

I would judge people who do laugh and snigger behind people's backs. I would always judge people who lack empathy.

A (previous) neighbour of ours had tourettes. When he found out I had German heritage he used to say "Nazi" a lot when talking to me. Although I knew he couldn't help it I found it upsetting and it upset him too, so we ended up trying to avoid one another. That sort of vocal tic is quite rare though I think.

When he found out I had German heritage he used to say "Nazi" a lot when talking to me.

I was going to post my own AIBU about this but your point seems ideal to follow on from. I appreciate the swearing variant of Tourette’s is uncommon but it feels like when they say the person “doesn’t really mean what they’re saying”
that it’s a load of rubbish and a cop out.

If they didn’t genuinely have that thought and it’s just “random words” then why do various relevant slurs come out when they see certain types of people? Fat, other races, other nationalities, etc. They clearly are thinking those words even if they can’t control whether they say them or not?

My DS 8 has ASD/ADHD and has a variety of ticks/stims we often don't know which it is. The biggest problem one at the moment is a throat clearing cough... this goes down REALLY well out and about in covid times

I would never laugh at them, from the documentaries I've watched it looks exhausting and I have every sympathy. I'd love to learn more about it though, what causes it, what improves the issue etc etc so as to make people at ease

BubblyBarbara that's an interesting point....however I've always thought of it as the brain thinking "what's the worst thing I could say to this person (fat/thin/black/gay etc) that I mustn't say?" And because of their Tourettes they're hyper vigilant to not offending whereas you or I might notice a person for being idk large of chest, for example but have the capacity to not say something disrespectful. I may well be wrong and would love to hear some feedback.

@BubblyBarbara
Complex vocal tics (words) are not any more controllable than the simple vocal tics. Attempting to suppress or control the tics makes them worse. It's more comparable to hiccups or sneezing than it is to an emotional outburst.

Imagine if you knew you were prone to saying words, any words, without being able to control how our what or when. You'd always be worried about what you might say, and might easily come to dwell on the worst thing you might say in any given situation. On meeting your German neighbour your mind might jump straight to the worst thing you could say to them, the thing you know you mustn't say, and hope that you won't say it, and then there it is and you've said it and every time you see them the stress and embarrassment comes out and so does the word. Offensive word tics are not representative of the speaker's secret shittiness.

*not indicative of a speaker's secret shittiness.

Also, context for those not au fait with the statistics, only one in ten of people with Tourette's has any form of offensive word tic, and that makes up only part of the tics from which they suffer.

My DD and her friend both have tics (neither have Tourette's though as far as I know). I've heard them joking about their own tics before but was very clear with DD that it's not ok to joke about anyone else's, which she understood. I have noticed that a lot of kids do mimic it, the best explanation I have to offer is that they didn't grow up around it like my other DD did, although obviously that's not an excuse.