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?

A Listers picking on a disabled man on social media. Not a good look.

My DB was diagnosed in 1986 when he was 9. He was in GOSH childrens psychiatric ward for 6 months as they were trialling medication on him as no one really knew about tourette syndrome back then. It's pretty unbelievable that in this day and age with so many new neuro diverse disorders being diagnosed and many many children having them that tourettes is still very much not understood and people are still so ignorant about it and what it actually is.

This is ridiculous my NINE year old has tourettes, he is also autistic, pda and adhd they actually are common comorbid conditions. Yes he swears. One of his current tics is "shut the fuck up bitch, no one loves you". Is it very nice.. no. But if you say anything or draw any awareness to it then the tics increase as they get worse with anxiety or stress.

He has another one about oompa loompas and several motor tics that can actually put him at risk of harm ie one where his head twitches and he closes his eyes so he can fall over or fall off his bike etc.

Sometimes the tucs are incessant. I gave videos of him ticcing constantly ie for 45 mins to an hour or more. They are exhausting.

Is it ideal he swears? No of course not a feature of pda is also shock language, again commenting, trying to correct it or drawing attention to it in any way makes it worse.

He KNOWS none of it is ok but he cant control it. Anything that draws attention to it just makes it worse AND also harms him, and his self esteem snd self worth.

Honestly its such a co plex condition. Do you really think he shouldn't go out or be around other children? Should he not be allowed to go to the park, or go to soft play What are your suggestions?

As it is he does these things rarely because he worries what others will think snd complex nature of his autism snd profound sensory issues means he cant cope in busy places. But when he is out he tics, he stims etc and he cant help that.

No it isn’t an impossible situation at all. It just requires better education and understanding of Tourette’s so that people understand it isn’t meant. And no one regardless of how big a Hollywood star they are has any right to say what someone with Tourette’s did or didn’t mean to say. Jamie Foxx needs to back off.

I agree with this. It’s so sad all round. I watched the movie & feel so much for John & Tourette's sufferers but equally how is it fair that people on one of the biggest night of their lives have to hear such awful abuse aimed at them?

Even though they knew (hopefully) that it wasn’t deliberate, how upsetting for them to hear? The impact on those individuals shouldn’t be diminished.

I am so sorry for all those who suffer from this horrendous condition - just terrible all round, with no one at fault.

That sounds terrible, and very difficult to live with. I can only imagine how absolutely exhausting it is.

But if he's saying "shut the fuck up bitch, no one loves you" repeatedly to another child at school...some children might not be bothered, but others could actually be distressed by that, especially children who may have autism etc themselves. Someone's behaviour can affect others negatively even if they don't intend it to, and mean no harm.

For instance, when I was 8, I was frequently accosted by another child with Down's Syndrome over the year they were at my school - hugged against my will, had my hair touched and grabbed, had them press their (snotty) face against mine, had them follow me around constantly, etc. And the adults around me brushed it off as 'oh, they have DS, they can't help it, be nice!' But it was incredibly distressing for me, and terrified me. So I think needs have to be balanced.

I think that's why the condition is so sad - it is very antisocial when it presents that way, and understandably unpleasant for others, and yet it can't be helped by the sufferer and isn't fun for them either!

But how do you balance it? I will absolutely not let him physically hurt others and we educate others te tourettes snd how he sats he doesnt mean.

So with other children my friends will prep their children. His siblings are learning. Tourettes Action fo very good training which I linked to earlier in this thread.

So I will talk to a child privately and apologise. But my childs needs mean he will struggle to apologise himself because of his autism, pda. So I do it on his behalf if necessary.

As it is he cant go to school as there is no school that can meet his needs. He hasnt had proper peer interactions since 2024 other than siblings snd close friends. He did have some online but the school stopped them because of the swearing. Actually what they need to do is teach the children. You can also explsin its ok if they feel upset and let them know it isnt meant in that.

But ultimately we do choose to be offended by swearing, they are just words and ironically my child learnt the swearing which became tics, at school.

You keep saying it isnt ok for people who swear etc to be around other children but you arent offering a solution?

Ime and everything i am learning is the key is to educate on how they are involuntary. Teach that there is no meaning or malice to them. Randomly my child often sings some of his tics, so they sound quite cheerful snd nice in tone even if the words themselves are not polite or socially acceptable.

Interestingly we haven't met many kids who are bothered by the tics, most children ignore them, especially once its explained to thrm. Its the adults that get offended and start saying that he should control them, go away etc.

Well, that's what's so difficult isn't it? It's not fair at all to exclude your son, and yet other people need to be thought of too when it comes to targeted insults (not just shouted swear words).

All I can do is speak for myself, which is that as someone with autism and suspected (not diagnosed) ADHD, as both an adult and particularly as a child, I would find that kind of tic to be very upsetting.

It's hard for me to grasp that it truly isn't meant to some small degree - even a subconscious one. Perhaps that's thanks to the fact that I'm autistic. But regardless, I know were I a child who had another child saying those things to me fairly frequently, I would've found it upsetting, impossible to believe they didn't mean it, and would've ended up very distressed.

And you should be supported with those feelings.

I am autistic adhd myself. And I'm not going to lie sometimes its hard when he swears at me, but ultimately I am an adult so I deal with it.

Its definitely hard for his siblings.

And I would expect any child he swears at/to to be supported. To have it explained to them and to be comforted for their feelings. In same way I do my tourettes child when he is upset by friends or siblings. Pretty much ALL our friends are neurodivergent so there can be a lot of hurt feelings. Adhd especially with RSD comes with a lot of feelings! But as adults we are responsible for our own and for supporting the children around us with them.

What we cant do is say the disabled person who swears, is that they cant be there. And lots of autistic children DO swear and insult, particularly pda kids who use shock language and those with highly impulsive adhd.

I have worked in mainstream and complex needs, so am used to a wide variety of behaviours that challenge. They can be difficult to manage but these children (and adults) still deserve space in the world.

Very sad to see and read about people with so little empathy they cannot put themselves into the shoes of others who are suffering with a terrible condition that they have no control over. My heart goes out to all of you who have Tourette's and who have children with Tourette's. I would never judge.

It sounds like you deal with a very difficult situation really well for everyone!

I can't imagine as an adult that I'd take offence to a child doing it, really, as somehow it's different in my mind.

I do think these things need to be managed, with everyone being supported. For instance, I should have been able to get away from the child with Down's Syndrome who was upsetting me, and children should be allowed to have space away from a child with Tourette's who might be upsetting them. But you're right, people shouldn't be excluded from taking part in society because they have Tourette's, and should be supported too of course.

Thank you for not judging.

Yes exactly you should have been supported, understanding a behaviour and with tourettes its a neurological impulse, doesnt mean we dont support it. But that often mean ignoring it and supporting the person who may be upset. So if other children are upset then yes they may need time away and in school situations this is hard to manage. But I would suggest when you have a child with tourettes in a school actually whole school education is necessary. So children and staff can understand and so staff can appropriately support all children. IME what happened was my child was punished for impulses they cant control.

Thankfully he now isnt attending that school but the damage has been done. And the lack of support and under from school made his tics worse so it becomes a vicious circle.

My child has other needs so has a lot of support needs and is never without an adult, his education is currently taking place downstairs with 2 staff educators. But he will be hopefully having some small group activities etc and in those situations he will have 1:1 adult support, very small groups no more than 4-6 children so he isnt overwhelmed but also so that the adults can manage any situation and support the other children. These groups will all be other children with needs, so managing that is going to be tricky.

I do wonder how things will be in the future ie in terms of him ever managing in public without another adult? But I cant predict that far ahead, in terms of his development etc.

Hopefully the film will continue to raise awareness.

So you want a person with Tourette’s to never leave the house? They can’t help shouting out. And they will shout out the worse thing possible.

Hi OP 👋 Solidarity and empathy to you.

I have a medication induced neurological involuntary movement disorder called tardive dyskinesia that was caused by some prescribed off label antipsychotic after a head injury and post concussion syndrome.

It is horrid and symptoms include involuntary movements of various parts of my body, and sometimes tic-like Tourettisms that aren't true tics, but similar. They can include involuntary sounds like repeating my own words.

(Michael J Fox played the lawyer in the series The Good Wife, who had tardive dyskinesia).

Anyway, life is hard with neurological conditions. I have written various references to my experiences on the other thread about the BAFTAs incident, so wont repeat them here too much. But I truly understand. And have been struggling with it for a decade now.

Advocating for others with these conditions has also been a mission of mine too, but it's hard as people really don't understand unless they have experienced it.

Hugs from me.

My daughter has Tourette’s, with coprolalia and this whole issue has always been a huge fear for both me and my daughter.

She does tic slurs but fortunately the person either hasn’t heard it, or has accepted it once she’s apologised and explained.

She always dos apologise, but at the same time, I agree that she shouldn’t have to apologise for her disability.

I’m heartened by the amount of support and understanding there does seem to be, but disheartened by the amount of ignorance, misunderstanding and hate I’ve seen online the last few days.

Thank you for this OP. So gutting to read so many harmful and dangerous misconceptions around Tourette’s and alarmingly a call for sufferers to apologise for their existence, be kept indoors and unfortunately even gagged (yes this is on MN, I won’t be forgetting the usernames in a hurry)

I agree with this.

Tourette Syndrome is incredibly difficult and painful for those who have it. The clip was easy to edit. Everyone knew the winners before the screening.

What has become more and more clear as this fallout continues, is that the people most offended haven't seen the film I Swear, and also (on the part of Hollywood, I'm looking at you Jamie Foxx) weren't even in the room. The tics could have been edited out, it wouldn't have made a blind bit of difference. They would have found their way to social media and we'd still be where we are now.

There has never been as much of a spotlight on Tourette's, ever, which can only be a good thing. Anyone who suffers from this awful disease deserves everyone's sympathy. Robert Aramayo's Best Actor BAFTA was thoroughly deserved. I Swear gives everyone the chance to experience, in a very small way, the sheer exhaustion of living with it. It ought to be compulsory viewing.

Quite pleased I havent seen these comments. I have seen other stuff in media.

My own child has tourettes, as detailed on here and other needs. I also work in complex needs setting and have had to work with and support all kinds of behaviours that challenge. Sitting between 2 children on a bus where one was spitting on me and the other was pinching me was fun! As the adult my job was to manage that behaviour and keep us safe. On a moving vehicle my options were limited, I had to make sure the children didnt hurt each other. They had no concept or understanding of their behaviour, for them it is about sensory needs often.

Some behaviours cant be stopped but they can be managed but it can take a lot of work and support in getting the right strategies in place.

With tourettes the tics cant be stopped, they can sometimes be suppressed at great cost the the person suppressing them. So there needs to be understanding. I dont think that means that people cant be upset or hurt by language but it helps to understand there is no malice behind it. Children and adults can be supported to understand what tourettes is.

The impulse to say the most inappropriate thing is a common one. My 9 yr old regularly comments on appearance. He does not know the N word and I dread him learning it as he likely would say it inappropriately just like he comments on size, baldness etc. Often linked with swearing. He cant help these impulsive comments. My job is to be the mediator in this situation, I will apologise on his behalf. But I wont apologise for his existence or him being in a space. I will say I am sorry and explain there is no malice behind it. Explaining he has tourettes and what it means should be enough, is really all I can do.

There is a lot of people who arent happy with the apology.

It is very difficult because of racism and the ongoing awful racism that black do endure. And the history behind it all. Unpicking all of that is very hard.

Interestingly I saw a video by a black woman with tourettes, she had a good prespective. She also had sane sticking middle finger up tic that my son has (always makes a trip to supermarket Interesting!). I will try and find link.

That doesn't mean that the word shouted out should be dismissed. It was entirely inappropriate and hurtful.

I've worked in care homes where those with dementia can be very abusive towards people of colour, our co workers. It's distressing to see them being humiliated in such a way when delivering excellent care. We were all supportive, no one expected them to continue.

John Davidson is on a couple of documentaries available on YouTube that show him and another boy struggling with Tourette’s as a child and an adult. I feel terrible for him. He must be feeling absolutely mortified.

@placemats yes in complex needs school staff can occasionally get upset. You definitely need to be aware but thr team support each other. We can tap in/out and get someone else to take iver.Debrief afterwards etc. Support mechanisms need to be there.

This is why maybe Bafta organisers didnt prep enough, did they explain to the presenters beforehand? Did they warn them and even give them the option of saying actually I dont want to present if this may happen? Could they have arranged for them to have tourttes awareness given before or even to meet Davidson? What more support could have been given to Davidson? He chose to leave early on as he was aware his tics were distressing some there. I have seen some people say they could have sat him in a soundproof booth. Thats not very kind really, but could they have made sure there were not microphones nearby him?

I dont know what adaptations were or could be made. Ultimately people with tourettes are entitled to be in public, they can explain their behaviour. As adults we can seek out help and support for our own upset and distress and process that all. I think children and those with vulnerabilities should be able to get support for any distress.

I know my sons language around the staff that educate him (at home he has EOTIS) can be horrible. I apologise. They are lovely about it and I have requested to the Local authority that staff have tourettes training so they can deal with appropriately. I am aware they get support from the organisation they work for. I have contacted a SLT and we are all working together to find the best ways to manage it.

When it comes to being out and about in public and possibly having things shouted at you by someone with tourettes am not sure what the odds are of that happening? And I guess you just have to process that. If its a work role then your employer should let you know the risks, and support you with debrief, safe place to process that. We all it 'supervision' where you get the chance to talk over things you may have found upsetting.

Its tricky to know what else can be done.

Some of us won't forget the determination in your posts to call the other victims in this situation, the black actors presenting at the BAFTAS, 'pathetic' for experiencing any moment of hurt or confusion when they hear a terrible slur aimed at them and would not have known in that moment, who was shouting it or why. Also the accusations of 'playing the victim' and more, stereotypes of stupid Americans who don't understand. Usernames are memorable sometimes, aren't they?

OP @DestinedToBeOutlived appreciate what you intended with this thread and there's been lots of useful information shared. At the same time, if full and frank understanding of the condition is to be achieved, it won't be done by posters screaming about how hideous it is not to react in any way other than with smiles and hugs. Nor will it happen by restricting discussion or opinions in, ironically, the context of saying 'no one can ever edit, censor or censure these disabled people's speech in any way'. I'm not saying this is coming from you, but it is appearing. Tolerance and understanding as a two way street, not an exercise in shouting at people for judging and ableism, is badly needed.

Racial sensitivity versus disability. Interesting to see how it pans out. So far, not very well from the deeply offended A listers.