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?

Bloody well said. A voice of reason! Thank you 😊

OP, @DestinedToBeOutlivedcan I please ask, without wanting to highjack the purpose of your post, how you went about a diagnosis? My DS is 11, and has been ticing since around 18 months (i filmed him eating ice cream after a day at the beach because he was ticing). He has a diagnosis of ADHD and ASD. He described the tics to me when he was 7 as "wanting to sneeze times a thousand". I know people with ASD can stim, but these seem more like compulsions. They are facial grimacing, eye and mouth movements and clearing his throat mostly, he has had whole body tics but not for a few years. They then die down and turn into tiny movements, and then repeat.

I appreciate you posting to try and raise some awareness.

You’re getting repetitive now. Be careful- that’s how my son’s Tourette’s started.

right op ( that’s not you howarewealldoing btw - just for clarity) I’m signing off before I allow blatant fools to lure me further into derailing your thread.

You said people should apologise every time they cause offence.

Youve caused massive offence to multiple posters- are you going to apologise?

You’d be ok with your 5 year old hearing language like that at a place which is supposed to be a family friendly space? Seriously? No I wouldn’t want my dd being exposed to bad language at that sort of age, we don’t use it at home and I don’t think it’s appropriate for young children to be hearing it.

Of course.

I'm so sorry you and your son are going through this.

I kept a diary as much as I could for a few months, as evidence, as well as a few videos.

For a diagnosis of tourettes your son would need to have a few motor tics and at least one vocal tic for a year. If there are long periods, I think it's about 2 months, without any tics at all he wouldn't get a diagnosis.

Dd was referred to a neurologist, due to her epilepsy as well, and they diagnosed her, but I believe a paediatrician can diagnose as well.

For the diagnosis she went through tests to rule out other conditions, and when they came back fine, she got the diagnosis as there isn't a test for tourettes as such, it's more gathering evidence.

Its a long process tbh, but I started by asking my gp for a referral after I had a month or so of written evidence and they referred her immediatly. All in all the time from gp to diagnosis was almost 2 years.

why because the truth hurts not my fault your so narrow minded and think someone being called the N word doesn’t deserve an apology. Regardless if it was not said with intent . He apologised so clearly agreed that’s all that matters 😀 I’m good goodbye 👍

My younger dc have been brought up with dd saying all sorts, as do their friends who come to play, kids are far more accepting than adults, they fully accept a simple explanation and move on with their lives ime.

I have Tourettisms as part of my movement disorder called tardive dyskinesia. The sensations i get before I get some involuntary movements and tic-type symptoms are very much like a build up to a sneeze, or (sorry for this comparison!) an orgasm.

Some of my involuntary movements include facial grimacing too. I hope you and your son are OK, and i send empathy and hugs ❤️

DD has a biting tic at the moment. If a hand goes near her face she will try and bite, so we don't put our hands near her face. Thats on us if we do. The dentist had fun with her today.

My Dd is always around her younger cousins. None of them swear. It's been explained to them that it's not OK for them to say those words but that my DD can't help it. Also helps that she tics an absolute ton of random words too. It's just backround noise to them. Seems like the kids have a better understanding than some adults on here.

My child started ticcing aged 5, to begin with facial tics, growling, which progessed by time he was 7 there were phrases, swearing, complex motor tics. He got his tourettes diagnosis recently almost 10 now.

But he was still in school until age 8 and yes children heard him swear. He went to beavers for a little bit. I take him out to cinema, park etc. His own needs mean we have to go when it is quiet but yes people hear and see his tics. He himself is hugely aware of them. We visited a local castle recently and the tics were quite extreme.

Unless I dont take my child out in public other children will hear them, he us a child himself and needs to be in family friendly, child centred places.

What do you suggest we do? Or are you suggesting he shouldn't go out for a meal or to soft play, or trampolining or the park or swimming? To do any of those things takes a HUGE amount of planning and additional support anyway as he is also autistic and has profound sensory needs.

He is still a funny, sweet, loving ,caring little boy. He still is allowed to exist and take up space in the world. Or are you suggesting we go back to the days where children with disabilities were hidden away.

@Sheldonslovechild this is my experience too other children once they have it explained to them are actually generally fine. Its adults who arent.

Op, thank you. That’s so good of you to take the time to do this thread. Sent with an understanding nod. I’ve also been upset for poor JD. I can’t imagine this mess could happen in 2026. My DD has TS and coprolalia also and I’ve already posted on other threads so I won’t again. But to sum up I’m disgusted that people said JD should have stayed at home & another said, should’ve been in a spectator box away from the rest. Segregated. Does that mean then that children with TS can’t go to a school assembly then incase they offend any children (thats if they can even get to school!) I’m really pleased that this thread is trying to educate people. The road is long and hard and a battle every single day for someone with TS.
So I’m posting an interesting article from USA on slate.com. Please see info below…
She is a black woman with TS and really helps with our debate! There’s so many that comment but have no idea about what it is like for someone to live with TS. It makes me very sad about the ignorance we face.

I hope it helps. I know some didn’t want to discuss the BAFTA aspect here but it’s an important part of recent discussions. Read what Ms Bean has to say - very positive.

Hi we just got the diagnosis my little boy is also autistic, pda, adhd and at first we were dismissed because he is 'autistic thats just what they do'. But he also has absence seizures and we saw a private specialist re the PDA they saw his tics and wrote a letter saying he needed to be seen by a neurologist because of how severe they were.

Previously my GP had tried ro refer to paediatric Neurology and they had said no because of the autism. This is diagnostic overshadowing and you can challenge it if it happens. We pleaded the case of how severe the tics were, and the impact they were having ie shared videos etc and with the letter from specialist we then got a referal.

Once he saw the neurologist they were suprised at how complex his needs were and so they did an mri, lumbar puncture, bloods for genetics all under general. They dont always do this but because my child's needs are complex they wanted to rule out a few things given the severity of the tics.

Then they looked at evidence, diary, videos etc and decided yes he does meet criteria of toyrettes as its motor and verbal tucs. We get a lot of facial grimmacing, excessive blinking that you describe plus head jerking, twitching arm movements, offensive gestures. And all sorts of phrases, some he even sings. Its so random. The neurologist after documenting it all and how long its gone on for gave him the diagnosis.

I found the free ttaining/awareness by tourettes action really helpful in understanding the tics.

Hi Op, thank you for educating us on you did and I hope she gets all the support she needs.
Just to once clarity, the issue is mainly with how the bbc handled
this incident, in my opinion is resulting in two things- more conversation and hopefully awareness of Tourette’s and a painful reminder that black people do not matter.

We can absolutely educate people about Tourette’s while also making it clear that racism — including the use of racial slurs — should not be normalised on television. These two things are not mutually exclusive. However, it feels as though it is more comfortable to centre the “right” victim, rather than hold space for the harm caused to Black communities.

No one is suggesting that he needed to apologise for having a disability. However, his statement did not meaningfully acknowledge the lived experiences of Black people or the harm caused by the use of a racial slur I was extremely uncomfortable and cannot imagine how the people who heard the slur live, must have felt. Black people are once again told just to make concessions and understand.
Some white people in their attempts to defend this have weaponised Johns disability which to me just looks like an attempt to shut down any concerns raised.
Quite predictable, really.
Also, and I have noticed a double standard, because John is white, he is afforded understanding but Kanye west said horrible things to other communities as a consequence of his disability but no one told that community to just take it on the chin and understand that his mental health as a reason for him saying what he said.

Also the BBC very conveniently managed to blur any mentions of Sudan, Convo and Palestine but I guess insults to black people are acceptable. There was no accountability form bbc and no safeguarding put in place to protect all parties involved.
Their statement which states something on the lines of “if you were offended “ is very lacklustre.

This thread isnt for discussing the baftas and the BBC awful handling of it. There have been and still are several other threads around that issue.

Please read the room.

I can agree the handling by baftas was awful they let down all 3 men and the live audiences. We can acknowledge the hurt caused by that. And many do. I am aware it has also been used as a fuel for racism by some and some have failed to understand or have ig ored, the weight of the slur because of the historical context and social meaning of the word.

There is a new statement by tourettes ceo actually today.

But this thread is not about that. Its about the daily impact of life with tourettes. Parents are sharing very vulnerable lived experiences.

So please go debate this on one of the many other threads about the bbc/baftas of which there are many.

Yes, this has been my experience with my daughter too.

Other children at school, family members, her friends, etc all just accepted it and on the whole ignored it - I mean, some of the stuff is so random and sometimes funny, that sometimes they would laugh, she drove us all completely insane with “washing machines live longer with Calgon” on a loop, but none of them started swearing or anything. It was explained that she had Tourette’s, that she couldn’t help it and it was accepted. She also tics a whole load of other utter nonsense so I guess the swearing, etc, all just blurred in to general tic noise.

It’s also pretty obvious when she’s ticcing, she tics in a kind of flat robotic voice which is different from her normal voice so most people/other kids were pretty aware when it was a tic

Everyone attending the ceremony should have been advised in advance that someone with Tourette’s syndrome would be attending and that there might be very offensive language, information on Tourette’s and the involuntary nature of the tics. No one should have been surprised that there was bad language even if they did not know exactly what it would be. The BBC should have bleeped out offensive language.

Anyone with Tourette’s attending should maybe have been offered a place they could could hear see everything but not be heard (and maybe seen if they preferred.) This could be used or not at any stage. Could have had a full table so not alone and served food/drink in the same way as everyone else (I didn’t watch so not sure what it is like).

Yes, yes I most definitely would be ok.

I'd rather have a child exposed to some inappropriate language than have a family who suffers with this awful, debilitating illness be excluded.

What do you have to say to the many posters who bring up the point its their children who cannot help but swear due to this condition? Should they kept away from other children?

That would be monstrous, surely?

You sound unhinged. Like at least one other previous poster, I won't be engaging with you anymore on this thread.

Absolutely because I would use it as a learning opportunity to explain in appropriate understandable terms what Tourette’s is and how it was not the child or adults fault and how it was important to be kind and inclusive and tolerant. I mean those in the true sense of the words and not the one sided hypocritical terms that some so called liberals means some of whom have shown themselves up spectacularly here.

This thread has been a total eye opener on the cruel, ignorant and selfish people you must have to deal with regularly as the parent of a child with tourrette's op.
As if you arent dealing with enough.

Im so sorry.

Hoping that this film and discussions like these may perhaps improve things somewhat.

Absolutely agree, you're completely right.

The fact I've spent a decade trying to educate people about my so-called rare movement disorder called tardive dyskinesia, and there's still a lack of understanding and compassion from doctors and the medical professionals makes me not very surprised about similarities with Tourette's.

It's hard work trying to educate people who don't (or won't) understand. They're not apologising for their ignorance too, they just expect people with the conditions to carry on apologising for something they can't help.

Can I ask a question please of other tourette parents? Have you let your Dc watch I Swear and did it massively kick of their tics?
I'm debating watching it with DD this weekend but she is having to travel next week and I don't want to throw her tics into overdrive as they will be increased anyway with the anxiety and stress of going away.

Any feedback would be appreciated. Thanks