AIBU to ask what you think of Tourettes and what you know about it?

[Tourettes123]

Its like 2 hours off awareness month, so thought I'd kick off the month with a simple post first off.

During the month I hope to educate as many of you as I can.

So, what do you think of Tourettes, and what do you know about it?

Honest opinions welcome.

Those types of therapy teach you to suppress the tics, mainly for the benefit of others. It’s comparable to aba therapy for autistic children. That sort of therapy makes me squirm.

why should we suppress our tics, at great personal expense, just to please others. You wouldn’t ask someone who could walk a few steps, to walk a 20 miles just because it’s convenient for the others.

My niece and my DDs best friend both have Tourette’s. My niece whistles mostly (although it’s not her only tick). My DDs best friend predominantly doesn’t an all body shrug. In both cases it goes hand in hand with ASD and ADHD. To be honeSt the ticking is generally the least of their worries! It goes ignored in school and within their friendship group. They are 11 and 10. Tics are not controllable and trying to hold them under control makes them worse. Stress makes them worse.

It’s a neurological disorder. It’s not caused my mental health issues. Basically the brains wired a bit wrong.

I do t know anything about it. I looked after a teenager with it, once. She didn't swear but her tics were very sexualised. That was interesting on a children's ward. I don't understand how teenagers would even have that vocabulary in the first place!

My DS now 10. doesn't have Tourette's but did have issues with tics and a stutter. A friend whose son had tics recommended magnesium supplements. After 2 months of taking it the tics subsided and within 6 months the stutter had mostly also gone as well. Could be that he grew out of them but I think the magnesium helped.

I do understand what you're saying and I am not saying people should be ashamed of their tics or anything like that but I still think there are certain types of behaviour which are not acceptable in society and encouraging teens to embrace their tics rather than learn how to control them surely destines them to be defined by their tics rather than all the other characteristics they have. For example my daughter is brilliant with little kids and wants to work in early years. If she allowed herself to swear constantly due to tics there is no way she could hold down a job working with small children. Therefore it is in her interests to learn the control her tics otherwise they could prevent her working in her chosen field which would really be a vocation for her.

She would rather be defined by being a brilliant child carer than a person with tics.

My older DS (aged 12) has displayed tics forcoming up 4 years. My understanding is that this meets the clinical criteria for tourettes but his paediatrician just says that he will 'probably' grow out of them and so is not diagnosing tourettes. His tics are dramatic facial, upper body and vocal tics. Not swearing but screeching sounds that sound like a monkey. His tics can be exceptionally 'violent' in that they can toss him around and somethimes he says that they physically hur him as his body jerks.

We chat about his tics and overall we take a fairly laid back approach to it. It is just something he does. He does not try and suppress them in any way because it does make it worse. He is in Year 8 and his classmates and friends are completely unbothered by it. He does experience some bullying for other things but oddly enough not for his tics. When he was in Year 7 a new student imitated him mockingly and was told very firmly by the other kids in the class; 'He can't help it so stop it'.

We watch some things online. Tourettes Action has some brilliant resources. We do talk about it (they are fairly obvious to anyone!) and just shrug and say he has tics if people ask.

Thanks OP for raising awareness.

My DS7 has had tics since he was around 2/3. He has physical tics which range from huge sniffs to a full jump.

I went to GP several times due to these and behavioural issues/trouble regulating. DS was put on the waiting list for CAHMS over a 1 year ago, other than that we have had no input.

DS says they feel like he needs to sneeze x1000 before the tic occurs. They happen at any time, could be at the beach eating ice cream. His tics cause him pain in his neck at times and he's also bitten his check so that took a while to heal and kept bleeding.

It's a bizarre neurological disorder which causes strange tics, outbursts and movements.

A lady at a shop where I live has a vocal tic, where you know she's around - little barks, shouts and outbursts tell you she's on duty.

I've seen a spokeswoman for a Tourette's charity interviewed on television, she has a compulsion to hit herself repeatedly. She wears protection on her knuckles and pads on the most hit parts.

Swearing is relatively rare, it tends to be odd, sometimes socially unacceptable tics - spitting food and drink, shouting in quiet areas, hitting themselves or others that tend to get noticed in public.

Throat clearing, tongue clicking, hand flapping and head jerking are the most common.

my DS describes it also like how you feel when you need to sneeze. You know it's coming and it's entirely involuntary.

We watched this video the other day- we were directed to it via the Tourettes action website. DS was really pleased to see it - he sometimes thinks he is the only kid in the world and it gets him down.

Thanks for the thread OP. :)

I've never met anyone with Tourette's (that I know of). Previously my knowledge had been pretty stereotypical, based around the more sensational tv shows.

I knew that people swear excessively and loudly. I'll be honest, I thought that it was 'one of those' illnesses 'like ADHD' where no doubt some people had it but others were just badly behaved and using it as an excuse.

Sorry that sounds pretty awful, but you asked. Anyway, I will redeem myself a bit now, I hope.

A couple of years ago my small child was diagnosed with autism. We had no history of neurodiversity in our families. Again, my knowledge of autism was very stereotypical and limited. It was a shock and I soon found myself going on courses, reading books etc so that I could help my child.

Fast forward a few years, hours of reading, research, living with the condition, going through the process of getting an EHCP etc and becoming very involved in the SEND world ... and lightbulbs went off for me. An ASD and ADHD diagnosis for me followed. Y'know, one of 'those' conditions. Eyeroll and facepalm at myself.

So, to Tourette's. I am still by no means and expert. I know a little more than I did because it's a co-morbidly for the other conditions that I've learned about including my own. I now understand that it's a neurodevelopmental disorder, that is also a spectrum. I understand that tics take various forms, verbal and physical. I understand that people can't help having it or control it. I understand that anxiety is a factor in worsening of symptoms. I wouldn't judge someone who was tic'ing, I'd see if there was anything I could do to make them more comfortable if possible and appropriate.

Oh and OP I'm of the same view as you RE ABA and other 'therapies' to 'cure' neurodivergent people of their dreadful afflictions. Foul.

Someone I know who’s a primary teacher has vocal Tourette’s. I’ve never heard him swear but he shouts random words and noises out. I assume hes explained it to his class, kids are normal quite accepting of such stuff.

Can I ask what the benefits are to having a diagnosis are?

Can't see any advantage right now, any time we discuss it she gets upset because we set them off.

The poster who's child went on a camp with other sufferers and came back worse - that's how I see it.

I worry about not acknowledging it's happening but acknowledging make it worse!!

I don't know. Lots of people say you're 'more autistic' after being diagnosed. You're not. You just start to feel more comfortable in yourself, able to be your real self and able to not mask constantly, and as masking constantly is utterly terrible for your MH that can only be a good thing.

My ds is undiagnosed but clearly has Tourette’s, his uncle has it too. I’d only go down the diagnosis route if he actually needed help with it, there’s very little they can do really with mild/moderate Tourette’s. In very severe cases where the sufferer may be harming themselves/other people etc there are drugs that can help, but they’re a pretty heavy duty type of anti psychotic. My bil did seek help once as anxiety can make tourettes worse, which in turn makes the anxiety worse because you’re worrying about ticcing, so it’s a vicious circle. He had some counselling to help keep his anxiety under control which helped his Tourette’s.

@sickofthisnonsense if they are still suffering as they get older, a diagnosis means they get extra considerations for things like exams. For example, they can be in a private room, get extra time or may get a scribe if their tics would cause them to rip up their paper.

It also means that schools have to be considerate of their disability. If they suffer anxiety from presenting to the whole class then they get the opportunity to present one on one or to a smaller group. If they say inappropriate things or make inappropriate gestures then they cannot be in trouble for it.

@Ihatethenewlook there are actually many different drugs that can help with tics now. Many sufferers can be helped with a basic anxiety drug like propranolol or an anti depressant like citalopram

tourette.org/research-medical/medical-marijuana/

in my family member uses her tics to paint
art work is beautiful

Two of my kids have Tourette's and supposedly my third son has a 50% chance of getting it.

I had no idea there as a Tourette's day though.

There was a series on C4 years ago, I think called The Street.
There was a man on there who had tourettes. He was early 20's and practically a recluse due to his tics.

At the end of the last installment, they said he had taken his own life because he couldn't see a future with the way he was.

Heartbreaking. He was very articulate and gave a very good insight to his condition.

I saw that too. Was awful seeing him try to do just everyday things like shaving, and ticking all over the place. Poor guy struggled to sleep at times.
The common misconception about Tourette's is that it is just swearing.. because that is what makes interesting television.

I have a friend who's teen daughter has Tourette's. She has physical tics and seizures. Her legs just sometimes give out. She also swears and does throw out some awful things about strangers. Despite that, she does hold down a job with an understanding boss.

I do understand that tics are not a choice and there is no control, but it is not fair to say that they must be tolerated. My friend and her family went to a Tourette's conference thing held in a hotel recently, and one attendee smashed all the TVs in the conference room.
Also, if you tic at someone calling them a "fat bitch", you have to realise that it may cause upset too, and some people have their own issues that means they can't just suck that up.

My DD clearly has tourettes, we're going through diagnosis. She's 9 and has had vocal and physical tics since she was 4 or 5. She tells me she also has 'thought tics' but I don't know if this is something others experience?

I don't honestly think much about it - should I?

My understanding is that it's much like that feeling you get before you jerk at night - you can suppress it, but it gets more and more uncomfortable until it has to happen or you go insane.

I briefly had a tic when a child (very common I believe) and it was certainly very similar.

But... I don't entirely understand why it needs awareness. Isn't it something you just get on with, like diabetes, or asthma? I wouldn't see any reason to treat anyone with Tourettes differently, beyond maybe standing out of the way if they had particularly dramatic tics.

I assume it's fairly tiring if you have a lot of tics, but that's certainly something I would expect them to self manage, like any other cause of fatigue. I get full body jerks when I'm sleep deprived, and they're absolutely knackering, so I would assume it's something like that... maybe worse? But again, not sure how that impacts on me.