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 think she simply meant that all people involved need to be aware . As in be told oh stay on my left side as I have tics and may accidentally hit or hurt you .

The twitter mob piling onto him.

If you mean by piling on people saying he should apologise .
seems they were right as he has issued an apology

You do realise that someone with that kind of tourettes could well be A CHILD. Are you saying they shouldn't be around children, thats riddiculous. My son has tourettes he is 9 his are complex motor and verbal tics, and like others in thread you have to be aware where you are in relation to him.

He is never without an adult, as he gets older however this may be different. He has complex additional needs and a spiky cognitive profile so its hard to predict his future in terms of independence. But he is part of a family and we have friends so he is and will be around other children. Is it now he shouldn't be aroynd children or once he is an adult? What if they are cousins, neices or nephews which he is likely to end up with or even his OWN children.

He also has siblings with additional needs, and my friends has an adult son with complex needs including learning difficulties he spends time with them. Is that ok now but not ok once he is an adult?

Absolutely nonsense statement to say people with that type of tourettes shouldn't be around children or adults with learning difficulties.

Does it take a lot of work to support all their needs, Absolutely but making stupid statements like that is absurd and ableist.

I have a disabled son both physically and mentally and I can honestly say that he and other disabled people are at the bottom of the pile. It's incomprehensible that wheelchair users in this day and age face such limitations in public places. It's not exactly rocket science to make places accesible. He's not in a wheelchair but uses a crutch and some places are difficult to negotiate. So seeing the outbursts of the DEI people is an eye opener.

He's been assured by the BBC/Baftas that his tics wouldn't be picked up and that the recording would be edited (screened with a two hour delay) so he did take sensible steps. He - as well as the men on stage - were then badly let down.
When he then realised that his tic had been audible on stage (he saw the men pause), he left the room.

What other "certain situations" would you have him exlude himself from? Because he tics, he shouts offensive things - the only way to prevent others from ever hearing them would be if he never left the house.

You say Someone with that type of Tourettes would not be safe around young children or adults with learning disabilities, yet John has helped and mentored children suffering from the condition. What a loss to them if he was kept away as you suggest.

Here's actually footage of Jon and other sufferers in a group session including a young boy:

Of course I don’t mean children shouldn’t be around other children🙄 I’m not an idiot.

I’m saying that an adult sufferer wouldn’t be safe with a young child at a roadside, so a Nursery worker etc. but you knew that and just wanted to be a dick.
Just like it wouldn’t be appropriate for someone afflicted to be a Samaritans volunteer or work for a rape survivor group / with very vulnerable people.
You simply can’t be fully inclusive of everyone, all the time, the world doesn’t work like that.

People just like to jump on and twist your words . Seems as they don’t what people with Tourette’s to be judged they sure do like to judge others .

I'm judging you, hard, for what you've done on a thread started by parents of children with crippling disabilities. What on earth is wrong with you, why would you be so unkind?

But actually you dont know that, people with tourettes can and do do all sorts of jobs so making a blanket statement like that is ableist snd riddiculous.

I’m sure you can think of certain situations where the responsible thing to do is to self exclude.
Just in case you are hard of thinking :
A situation that includes someone anorexic - calling her a ‘fat cow’ might be uncontrollable but it could lead to her death.
A situation with someone who has a far more serious mental impairment that means they don’t understand that the vile comment directed at them wasn’t intentional, I’m thinking of my adult Nephew with Down’s syndrome, he would be devasted at someone calling him a horrible name but wouldn’t be able to understand that the person didn’t mean it.
What about a gathering including recently bereaved parents/ partner etc.
Someone who KNOWS they will make a hideous comment is responsible for making sure they aren’t putting themself in that position to start with.

Please state and show facts where I have been mean . Oh you can’t because I haven’t.
stating that two things can be right at the same time . Is not being mean all I said was an apology
should be made which has now been given .
yet you proved my point

But how is that even practical? What if someone with tourettes and copralalia passes someone with severe anorexia in the street on the way to the shop, for instance?
If you watch that link I posted, the wee boy just tics uncontrollably. He's unsulting everyone, all the time. What would you do - have him not go to school?

In practice, many people with Tourettes do self-exclude a great deal, and have poor mental health outcomes and a higher suicide rate.

Are you aware the JD works in many youth groups and is a youth leader?

I’m not talking about randoms passing by in the street, it’s patently obvious what I’m saying.

Surely part of the point of the thread (but not the film) is also about how much other people are expected to tolerate, and how much responsibility an individual has to protect other people when they can't learn their way out of it?

I'm fine with "apologise and move on" for a one-off bit of verbal but it's only fair to recognise that it does affect other people and not only because of ignorance.

I’m assuming that JD isn’t in a position where he’s helping toddlers cross the road, if he is then he definitely shouldn’t be because it’s FUCKING DANGEROUS.
He shouts at his Dog to go into moving traffic for fuck’s sake.

But he does work with vulnerable children/people and you have posted that he shouldn't.

He's not an idiot, I'm sure he's aware of this and hence isn't a lollipop man.

It's entirely appropriate that he works with young people with Tourettes though.

I'm not sure how you think someone with tourettes can protect others without locking themselves away.

Of course I acknowledge it effects others as well. Part of living in society is dealing with other people, and some other people have disabilities. That's a fact of life.

@DestinedToBeOutlived I'm sorry your thread has been derailed. Your intention - to help people understand what it's like to live with Tourettes - has achieved what you set out to do for some of us at least. Thank you for everyone who has shared your and your children's stories. I really hope that new treatments become available and that the awareness raised by John Davidson and those telling their stories on this thread will mean people with Tourettes are treated more kindly when out and about.

What I don’t understand, and I’m hoping someone can explain, is why the tics are often so offensive? I do know of a female comedian with TS who doesn’t tic offensive things generally, so it’s not universal. Can people do anything to redirect tics to less offensive?

There’s a man near me who tic’s really offensive things and it is very uncomfortable passing near him especially at night if I’m on my own, he also physically grabs you if you get close enough, I’ll walk the long way around if I see him between my house and my group. I do not reply to him, is this the correct approach? Or should you say don’t call me that?

It's a condition called copralalia, that around 10% of Tourette's sufferers also have.

It causes people to shout out the most socially offensive, taboo or inappropriate words or phrases for any given situation. So John Davidson eg shouted out "fuck the Queen" when he was presented with his MBE (to her face), or someone might shout "I've got a bomb" at an airport, or "I'm a paedo" when walking past a primary school.

I can appreciate it's scary someone trying to put hands on you. If it is tourettes with copralalia he suffers from, admonishing him is pointless - he doesn't want to call you that either, and stress makes people tic harder.

Here's the wiki link to copralalia:
https://en.wikipedia.org/wiki/Coprolalia

Here's quite an interesting link of John from four years ago, plus fellow sufferers including a young boy, at a police station. It gives you a feel for just how uncontrollable the condition is:

Also the film of John's life, I swear, which has just won the Best Actor award, will be on Netflix from next month so that would answer a lot of people's questions as well.

There are different types of Tourette’s . The type of Tourette’s that John Davidson has is Coprolalia which involves swearing, inappropriate words, slurs, etc - my daughter also has this type. Not all people with Tourette’s will have Coprolalia, I think it’s estimated to be around 10-30% of people with Tourette’s have Tourette’s with Coprolalia.

My daughter has had CBIT which is a type of behaviour therapy which is supposed to work by redirecting a tic, so instead of punching someone, you click your fingers. Unfortunately for her, it doesn’t work that well - sometimes in the case of verbal tics, she’ll have ticced before she’s even aware she’s about to tic, she’ll have no idea what’s about to come out of her mouth until she’s ticced it.

I ignore it. The worst thing I can do with her is to draw any attention to it. The more attention she gets, the more anxious and stressed she gets, the worse the tics are, the more anxious and stressed she gets, and then we’re stuck in a circle which will invariably end with a tic attack.