To post this about Tourette’s

[wombatsandaplant]

After an incident on a plane the other day, I thought I’d do a post about Tourette’s in the hope that people will learn a bit more about it.

I was on a plane the other day and was ticcing as I do, (tics are what the involuntary movements and vocalisations are called). Some woman was less than impressed, she was sitting in the row in front of me, I explained why I was ticcing, she was not having any of it and kept telling me to be quiet. I was trying my hardest to be quiet, which I thought I was doing quite successfully. She complained to the air hostess, I explained to the air hostess and she was very sympathetic and told the woman there was nothing she could do as it was Tourette’s and it’s not voluntary. The woman eventually was quiet after this. I get it’s annoying to others but it’s even more annoying to me. I try to embrace though as I can’t do much else.

I have to deal with various incidents like this on a weekly basis. So I am hoping to educate you a bit so you can understand a bit more about Tourette’s.

So, Tourette’s is a neurological disorder that is inherited usually. There are rover 300,000 people in the uk living with Tourette’s. Tourette’s is characterised by involuntary movements and noises called tics. This can be anything from a shoulder shrug, to an arm flail, to a sniff or a shout. It can also mean swearing (this is called coprolalia, but only 10% of those with Tourette’s will swear (I am one of the 10%). Tics can occur in nearly every muscle in the body. Tics usually start in childhood and vary with severity, sometimes they can be worse and other times they will be better.

Vocal and motor tics (the two types of tic) can cause pain and discomfort. This is both through the premonitory urge and through doing the tic. A pre monitory urge occurs frequently but not always. This is an urge that occurs before a tic. It can be a feeling of pressure build up to a tingling sensation. Sometimes there is no premonitory urge and the tics just happen with no warning.

Tics can sometimes be suppressed for a short time, not everyone can suppress though and it can be very difficult to suppress. Think of like blinking, you can stop blinking for a short time but soon you will have to blink.

Tics can be anything. Motor tics can be anything From arm shrugging to jumping, from finger waggling to head jerks. Vocal tics can be anything from whistling to shouting, from phrases to to a hum. Some tics can be amusing. One of my favourite tics is ‘donkeys are the new unicorns’. Tics can be in context to completely out there.

If you have any questions please feel free to ask them and I’ll do my best to answer them.

Thank you for posting op

My husband and son have Tourette's. My sons is very young and it's very disabling for him. He gets stared at a lot and worries about going places.

It's put our family through hell and is more than just the butt of a joke or something you see in mad people on TV. We're learning to live with it but if people could stop pointing at an 8 year old boy shaking his head and yelping and his mum trying to keep him upright, that'd be great.

Thanks for sharing. My son has tics. I knew very little about it until his diagnosis.

This is a great post!
My 7 Yr old ds has had tics since a baby, I didn't realise that's what they were but the hv noticed at 2yr check. His initial one was a sort of flappy arm flailing thing but has evolved into a shoulder shrugging body popping type thing and he sometimes flicks his ear. He now has a facial tic and a vocal tic. He hasn't been diagnosed with Tourettes, he had a multitude of tests including autism assessment and mri brain scan and the tic side of it was diagnosed as stereotypical movement disorder? Nothing more said on it. He's currently awaiting another full assessment for autism so it may be pinpointed through that. My ds is embarrassed about his tics and he's only 7.

I'm glad I posted, it has made me a bit more confident about ticcing.

as a parent of a 15 y old with physical Tourettes and 6 separete diagnoses and a 9 y old with 6 ive had a many a run ins with people as well

its always the older generation that dont under stand

he is a big boy hes 6ft 2 and his whole body and head goes,he used to make vocal ticks but dont as much any more

hes mentally 4-5 years behind due to asd as well,hes never alone so always a adult with him

we have had hes drunk or drugs,hes not normal

im very very mouthy and ballsy and dont give a shit(hence my user name)so they get both barrels off me

Sorry to hear that Takenoshit. Not sure I agree about it being 'always the older generation' though. That hasn't been our experience.

Thank you for sharing, my 9 year DD is currently going through diagnosis, I believe she is autistic but she does tic, more vocal than movements.

If I was on the plane I’d of stood up for you I can’t stand people being arseholes towards others, you shouldn’t have to explain yourself to anyone, makes me feel sad that people are such judgemental twats at times with such lack of compassion, I think if me and @TAKESNOSHITSHIRLEY had been on the plane we’d of been arrested on arrival because I couldn’t have kept my mouth shut

With regards to the swearing, I've often wondered ... do children with Tourette's have verbal tics that are normal words (e.g. tic'ing with 'Baby Shark!') and then, as they learn swear words, progress onto verbal tics that are swearing? If you completely isolated the child, would they never start using swear words in tics?

[I don't mean to offend anybody with this question, the OP did say to ask!]

I was at school with a lovely lad who had Tourettes, he was very open and upfront about it and to this day I will defend anyone with the condition, almost on his behalf. That woman sounds awful and you sound lovely, if that's any consolation. Un-Mumsnetty hugs for you

My step brother has Tourette's

We know your pain. Massive hugs. The more someone tells you not too. The worse it gets. The more under pressure you feel to stop. The worse it gets. You're between a rock and a hard place. Hugs xxx

Funny story

My stepbrother key shouting. There's a bomb on this plane. You're al going to f**ing die' over and over.

The staff were amazing!!! We couldn't of asked for more from them. He can't help it.

Wombat - I'm so sorry you had to deal with that ignorant woman. I suppose the way you could look at it positively is that she was just one person and everybody else, the airline staff included, were understanding. Imagine going through life feeling the need to be nasty to someone who clearly has an illness they cannot help, she clearly isn't a nice/happy person for whatever reason.

My close relative has Tourette's and I understand how difficult everyday life can be with this condition. He describes it as a massive sneeze which builds and builds and has to be released.

There will always be ignorant people in life unfortunately and I really hope lots of people read your post and gain a better understanding of the condition.

Thanks guys. I want to create more awareness about Tourette’s, not sure how but I want to do something.

Fucking good for you!! A well rounded, educated, thought out post.

I thank you, we are a family full of tics. My eldest has Tourette's, my middle son has tics but they aren't as severe and we aren't bothering with a 'diagnoses' because it's pointless.
And DS3 has a 50% chance of tics or Tourette's.

I've seen my sons get so self conscious, and they suffer real pain through it as well.

My middle son text me while I was settling the baby the other night "Muuuum DS1 keeps slagging off my tic, can you tell him off??"

Then this morning DS2 was having a pop at a new tic DS1 has.

You would think they were sympathetic to each other?! 🙄

I digress.

A few years ago my friend was bitching about someone constantly clearing their throat on a train journey. At the time eldest DS has an awful, violent almost, throat clearing tic. I tried to explain that it's one of the most common tics and perhaps that's what it was for them? But she insisted that she understood tics and this person was definitely 'just annoying.'

I literally know no one with Tourette's and I know absolutely nothing about it, so for me this post is great.

That woman was vile and if I ever made the mistake of asking someone to be quiet and then then telling me they have Tourette's I would be mortified... and extremely sorry.

If I was on that plane I would of told her to fuck off on your behalf

I don't know if anyone will be able to link it but I watched a fascinating video about a young woman with tics, she was trying to cook an egg.

She did it with a fantastic sense of humour so I felt able to laugh. What it did make me realise though is that this can be very disabling and this woman would struggle to cook for herself and so would need support. If not family or friend support then money to employ someone to do so.

Thank you for this post

Ds and Dd both have Tourette’s.
Would just like to point out that swearing is actually quite rare.

@ namechangedforthis1122

I think therein lies the problem. The OP spoke to the woman, explained that it was tics and she was carried on being a non ergo she was a Bit of a Cunt.

You and I, normally people would be suitable embarrassed. That's kindness and empathy.
I believe most people are like that.

Then you get The Others.

There's plenty of them on MN....

Thank you for posting. Both my sons have been dx with Tourette's and DF obviously has it but is undiagnosed, but has had it all his life - he's in his 70s now. Diagnosis has been helpful - and very easy (GP referred to paediatric neurologist after a year of ticcing) - the boys understand themselves and are confident in themselves. Everyone knows to ignore it - school included. Their tics wax and wane, and get worse at exciting times, like Christmas. DF is embarrassed of his tics and it's given him huge social anxiety.

I work in a school. Tics are VERY common indeed (not Tourettes, but other tic disorders). Most people grow out of them, but many do not.

Thank you op.
I think as our kids grow up, they will be so much more respectful about tics and other conditions.

You rock for staying calm and explaining so articulately

Yes Gilead I said something similar upthread. The misinformation around the condition is awful. But the swearing makes much better telly..... (sadly of course)

Yeah swearing is rare. Though I’d like people to be aware swearing is part of Tourette’s, I’d also like them to understand that very few with Tourette’s actually swear,

Also a couple more stories.

I was in Tesco and there was a woman using a cane and I couldn’t stop ticcing ‘you’re hitting me with blind stick’, her husband got very pissed off even when I explained.

Another I was in town and there was a young man with a guide dog and ticced ‘you’re guide dog is attacking me’. He was very understanding luckily and we both found it quite funny,

I’ve also ticced ‘you’re a paedophile’ and people do not like that, I’ve been threatened to be punched a couple times.

My son has tourette's, along with a few other conditions. Sometimes it seems like he is ticcing constantly, right up to the minute he falls asleep.

It's misunderstood a lot, I think. I had a social worker involved at one point who said it must be stress related due to bad parenting and wanted me to do a parenting course so he would stop 🤨

some days he really struggles with it and gets so angry with himself. Other days he laughs at the things he does and says because it is so random and unpredictable.

I'm glad you've written this post as it is something that needs more awareness.

I ticced as a teen and have 2 kids with asd who tic. The nearest thing to every day experience I can compare it to is a really bad itch that absolutely needs scratched.