Tourette Syndrome - a little education.

[DestinedToBeOutlived]

There has been a lot of misinformation on here due to recent events, so I thought I would share what life is like for my dd, who has been living with tourettes and seizures for almost a decade.

I hope other parents, and those who live with tourettes can also share whatever they feel comfortable with.

syndrome - NHS [[https://www.nhs.uk/conditions/tourette-syndrome/ share.google/mxz8qKuhru11KtzQH

My dd also has epilepsy, often the two go hand in hand. Her tics are as involuntary as her seizures.

She absolutely cannot help what she shouts or when. It's not just shouting either, it's things like head jerking, whistling, blinking really hard, hand movements. These are often painful for her, and as such her school is at about 40% attendance.

Because of the narrative around tourettes, as displayed on many threads, kids stay away from her, so she has no friends, the only other kids that talk to her are other kids who have tics and they can't really be in the same room as they all set each other off a lot of the time and it all ends up very painful for all of them.

We have tried endless medications, most made her worse, some made her tics a little better, but came with side effects that just weren't worth the trade off.

Because of the attitudes of others she suffers from anxiety, which make things worse for her.

She can be walking along quite happily and the shout that I'm a slag, or she can be in the middle of school and start shouting things like "jam and toast" as well as many, many other things.

Sometimes she will have a seizure and people rally round and understand that, but there is no understanding for her tourettes, because people seem to think those are voluntary, or she can suppress them, or she can walk away and calm down and she will be fine.

Tourettes simply doesn't work like that, the tics are as random and involuntary as her seizures.

It could come on at any place and any time at all.

She has tics in her sleep so wakes up in pain every morning, which also effects her schooling.

You may see a 20 second snapshot of someone and think it's funny or offensive, but unless you have to live with it you really don't have a clue.

It's not a case of "well you must be thinking that, that's why you said it", it can't be prevented any more than you can prevent a hiccup.

To anyone who has formed an opinion due to the recent news story, please educate yourself about tourettes first. It's a scary syndrome and you're not in control of your own body. Can you imagine living with that day in, day out.

You wouldn't tell someone in a wheelchair to walk because their wheelchair is in your way, or someone who has asthma to stop having it because their coughing is pissing you off, or someone having a seizure to snap out of it because you need past them, so why are we telling those with tourettes to make their world smaller to accommodate people?

I both empathise with the difficulties of Tourette’s, but also see why it is uncomfortable for racial
slurs to be shouted in such a public, visible way.

There are lots of threads about this particular tic at the BAFTAs, there aren't any threads about the reality of living with tourettes 24/7 with no break at all.

There has also been a lot of ill informed people, and people simply making stuff up, so I was hoping for a thread for people to learn the reality, rather than discuss the BAFTAs

Thank you for your really helpful thread @DestinedToBeOutlived . I have limited experience of Tourette’s so reading your post is really helpful.

Personally, I think what happened at the BAFTAs has been handled badly. It should have been downplayed instead of sensationalised. At the same time it should have been used to educate us all further about Tourette’s.

I think the physical aspect is really interesting and not talked about much - that it's actually painful to be ticing

I think your link is broken op.

I can't imagine how difficult that is to live with.

Some of the commentary I have seen today made me sad at the lack of understanding or compassion. People are very quick to cancel each other these days.

Although people do unfortunately do and say some pretty nasty and stupid things to wheelchair users and people with other types of disabilities. Doesn't make any of it ok.

I think the issue at the BAFTAs was the BBC could have edited out the N word and they didn’t.

https://www.nhs.uk/conditions/tourette-syndrome/

I watch a programme called Baylen out loud on discovery and she also has tourettes. She has tics that involve her whole body at times as well as swearing. Also has OCD and anxiety

There is a difference between someone saying it because they can not help it, and a broadcaster broadcasting it.

That is not abelist, if I had an epileptic fit during the awards ceremony they would not have shown it. That is not hiding my disability, it just wouldn't be appropriate to broadcast.

Thank you for explaining. It must be so hard. Your poor dd.

syndrome - NHS [[https://www.nhs.uk/conditions/tourette-syndrome/ share.google/mxz8qKuhru11KtzQH]]]]

Sorry here is the link, think I deleted a bit of it.

Its incredibly painful for sufferers, people mainly seem to concentrate on the vocal tics because that's the part that affects them the most. Even the vocal ones can be really debilitating, but dd has been in hospital multiple times due to injuries caused by her tics.

Tbh anyone who can watch someone badly ticcing for more then a few minutes and not realise that it's both real and incredibly difficult to live with has zero empathy.

I thought we had moved passed this regarding torettes in particular after a few years of some great role models on reality TV. Pete was it? On big brother for example, there was a lovely man on the undatables TV show with torettes too, I can only think that there hasn't been much recently so it's slipped out of the public consciousness.

I hope the incident at the baftas educates us again.

Agree the BBC didn't handle it well.

https://www.nhs.uk/conditions/tourette-syndrome/

Thank you for sharing this, it is so important that the good work that John has been doing his whole life by advocating for people with tourettes and raising awareness, isn't outweighed by the recent press.

My son doesn't have tourettes, but he has struggled on and off with horrible physical and vocal tics (although not specific words) since he was about 7, and that has been hard enough. There is SUCH a huge lack of understanding and tolerance, so I cannot imagine how much harder it is if a person has tourettes. He was out of education entirely for almost a year largely because of it. He had a teacher tell his class that it was okay to laugh at him and tell me that I have to expect it because the things he does are funny. I also had another parent repeatedly encourage her son to punch mine in the face because she viewed him as disruptive. I have a family member who's daughter was out of education for years and barely able to leave the house due to the debilitating effect of tourettes.

The lack of compassion and tolerance is truly shocking 😔

I know you don't want this to be about the baftas but I did find these two quotes helpful for making sense of what had happened when I read about it:

"Speaking to BBC News, Robert Aramayo, who won best actor for playing Davidson in I Swear, said: "They're tics, he [Davidson] is ticking, and we have to understand that the way we perceive Tourette's is a joint responsibility.

"It's not shouting obscenities, it's not being abusive, it's Tourette's and they're tics.

"If it can lead to a deeper understanding of Tourette's syndrome and what tics actually are, if our movie is a part of that conversation, then that's a really incredible thing."

Pippa McClounan, communications manager of Tourette's Action, told BBC News: "As much as these words do cause hurt and shock in people, it's really vital that the public understands a fundamental truth about Tourette's syndrome, that the tics are involuntary, and they are in no way reflection of what that person is thinking and their beliefs."

www.bbc.co.uk/news/articles/cz6edwg06n1o

Thank you for sharing.

It must be really hard to live with, and to watch. Something I’ve found hard in this current situation, though I have no skin in the game, is the lack of recognition of how distinctive tics are. I may be mistaken, but whenever I’ve seen someone ticcing, it’s been visibly difficult- compulsive, explosive, almost. So very obviously uncontrollable. My son had some physical tics for a while, he’s ND, he grew out of them. It was very evident that they were not deliberate, chosen actions.

I think it’s important we advocate for all concerned.

It's so hard.

Lots of children go through phases of having tics, that's what the doctors and I thought it was with dd for a while, but everything got worse, and she got a diagnosis a few years back.

The difference between childhood tics and tourettes is the different amounts of them. To start dd had just one, that lasted about 8 or 9 months, that was considered as childhood tics. She developed 4 or 5 more different tics quite rapidly, including verbal, and was diagnosed when they had been going on for 18 months. You need multiple tics, and have, I believe, at least one verbal tic to be diagnosed with tourettes after a year.

I can't see how anyone could be offended if they understood tourettes and how tics display themselves in certain people with this condition. Your daughter and family must have an uphill struggle daily dealing with people's ignorance and organisations like the bbc should be more vigilant. But then again we have idiots like susanna ried spouting her ignorance and using it to rally the British public into a misinformed frenzy to raise viewing figures . It upset me to see what happened last night being used as a tool to sensationalise a condition that the film and brilliant actor had tried to inform us about , what a shame

Dd and I went to see the film, and had someone complain about her

Fortunately the cinema staff know us well and it was all good.

The irony wasn't lost on me though.

Thats just beyond words !

I’m very sorry to hear what your dd has suffered. I have a child whose behaviour is impacted by neurological differences and have some experience of how distressing this can be. It must be devastating for you both.

Unfortunately from looking at the other thread, the ‘understanding Tourettes’s’ movement (I’m calling it that despite knowing it is not a formal movement) seems to pushing the line that Tourette’s sufferers can shout anything at all at strangers, any racial or sexual epithet, any obscenity, any threat, and no one can be allowed to be upset by it, or hurt by it, or angered by it. This is completely unrealistic and will just infuriate people. (I have to say also that I think there is a strong element on that thread of belittling the race discrimination black people have suffered.)

The reality is though that if a stranger were to start shouting at me in the street, calling me a c**t, say, or shouting something about my disability (I use walking aids), I would be terrified and upset. I might well feel anxious about leaving my house subsequently. If I subsequently found out that person had Tourette’s, I don’t think that fact would much affect my feelings of public humiliation and fear of leaving the home. The impact would be the same. The vile words, said, could not be unheard - and to pretend otherwise is over simplistic and will not build sympathy and understanding.

This has not happened to me and I sincerely hope it never will! It is just a theoretical example. But I think we do need to recognise that words have immense power to cause terrible distress - and that the attempt on the other thread to minimise this is very unlikely to be making people feel more kindly about Tourette’s. I don’t think it is at all a positive way forward.

@DestinedToBeOutlived thank your for this thread. My DD has a tourettes diagnosis and I have been so upset with what I have seen in the media and on social media today.

Like your DC the constant pain she is in and the huge amounts of anxiety her vocal tics cause are not seen by people. She is tiny for her age but will scream swear words at people, come out with completely inappropriate tics. She doesn't go anywhere by herself as we can't risk something happening to her if she tics the wrong thing infront of the wrong person. She's even supervised in school to keep her safe.

People see the funny clips on the Internet with zero understanding that it's a 100% full time battle to just do normal things. Sometimes she can't even eat as her tics don't allow her to get food to her mouth. She doesn't trust her tics to allow her to use cutlery incase she stabs herself, to make a hot drink incase she hurts herself. It's endless how much it restricts her life.

I'm glad the the film has raised more awareness and owe John Davidson as massive thank you for all his work.

I'm not sure what you mean by tourettes suffered can shout whatever they want.

They can't help it. They have no desire to do this.

I've never known someone with tourettes shout at someone in the street with no context at all, and not apologise and explain afterwards.

They don't just scream "Cunt" at you and walk away.

I said on another thread, it's like the difference between your husband accidently elbowing you in the nose when opening a cupboard, and him deliberately punching you in the face.

Although both hurt, one you would absolutely understand, and the other is abuse, and your reaction in both scenarios would be different.

Perfectly said x