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.

My eldest DD has tics when nervous or not quite settled. She has no idea she is doing stuff like whistling or making strange movements or noises. No diagnosis of anything though.

I think she is probably on the autistic spectrum but high functioning and I have never attempted to get her referred for diagnosis because I thought it may set her back. But she is now looking into this herself, maybe I was wrong.

My nephew also went through similar in his early teens. He is very insular but fairly content!

Sometimes that can be stimming due to autism rather than Tourette’s.

There are medications available that help although not stop tics completely. Having a diagnosis gives access to these.

I have never seen such relief on my son’s face when he was diagnosed and had an actual concrete explanation as to what was happening to him. Just being able to tell others what it was empowered him.

It is rare for Tourette’s to be on its own, there are usually other Co-morbid conditions so diagnosis can help get a full assessment and identify other things that may need support. ADHD is more common with Tourette’s. Medication for ADHD can make tics worse so being diagnosed can ensure you are treated correctly for both conditions.

The paediatrician is wrong and it isn’t usually paediatrics that treat Tourettes it is usually CAMHS or neurologists. Even if he does have reduced tics when he is older there is no reason he should suffer until then. There are lots of medications available now that would help, particularly with physical tics that are causing pain or injury.

I was told by NELFT that medication was a last resort only if they tried other therapies first.

I've seen videos of kids doing the habit reversal training and it doesn't seem cruel at all to me. They teach them how to deliberately do a different action from the one the tic is trying to do. So if the tic is to look up you deliberately look down and hold it until the urge subsides. The kids I saw found it took a couple of minutes of hard concentration at first but the more they did it the easier and quicker it worked.

My daughter gets special measures in her GCSEs due to her tics, she has a separate room so she doesn't worry about disturbing others, and can take breaks (and the timer be stopped) if she needs to eg if she is going to have a big tic attack which will prevent her writing or concentrating.

I know that DS fars exceeds the diagnostic criteria. We had to push to see a paed in the first place. We went back to the GP twice requesting a referral and when she wrote it she literally sighed and rolled her eyes even though she could see for herself right in front of her that he was ticcing.

we were told medicating was a last resort too. For those of you that took that route, how was it?

Yes thought tics are definitely a thing. Very common among the touretters I know and the wider community.

We were offered medication from the start. The criteria for offering it was that the tics are having a severe impact on them or causing pain / injury. My son was being sent home covered in blood where his tics made his face bleed so we fit the criteria. He was 7.

There was a lot of trial and error and changing meds as he got older always trying to balance the ADHD and tics. We have found the medication helps with the physical tics but not really vocal ones. It doesn’t stop them but helps with the intensity of them so there isn’t as much pain.

I'm afraid I've had bad experiences. One of the children I look after has a limb difference, and he was once verbally abused on the bus by a woman who had Tourette's. It devastated him, and he didn't leave the house for months after. I'm not sure what the answer is really. Therapy to suppress tics is an option. It's not fair on other vulnerable people to be subjected to foul and offensive language.

@veronicagoldberg I'm assuming you mean that the abuse was involuntary from the person with tourettes.

If the person who had abused him was suffering from autism for example, would you be saying that all autistic persons should be given therapy to never speak in public in case they say something hurtful or inappropriate? If not, can you explain why not, what is the difference.

Thank you @Tourettes123 , I've been gently exploring this with DD and obviously only have her description of it. It's reassuring to hear it's 'a thing' and I'm quite pleased DD can explain it to me.

Unlike the physical and vocal tics I have no concept of how frequent or intense the thought tics are for her. Maybe it tips into the OCD arwa as I've read that is a common comorbidity.

The Tourettes Action website has been very useful as a resource for me and DD.

Obviously for the child you look after it is awful, but, and I’m assuming it was involuntary here, it’s not the person with tourettes fault. I bet they felt fucking atrocious about what they were ticcing.

tics to suppress is an option for some people, but it’s basically the equivalent of aba for autistic children. Which is abuse.

and why should someone with tourettes go through abuse for something they can’t control. It’s not the child you look after fault but equally it’s not the person with tourettes fault either.

suppressing tics hurts a lot and just makes the tics worse later. Which is just not helpful for any one. Why should someone suffer just to avoid the possible potential affect on other people. For the greater good, I guess, but look where that got grindelwald.

How do you know the lady had Tourette’s?

if it was obvious that her behaviour was out with her control - then the onus is on you to explain that to the child.

Tourettes is a neurological illness, not a behavioural choice

Sorry I meant to come back and post more about tourettes but I’ve been super busy.

so here is a bit about tourettes;

Tourettes is a neurological disorder. It is characterised by tics, these are completely involuntary and uncontrollable movements and sounds. They’re spilt into motor and vocal tics. Motor are movements which cause you do things such as jerk your head, jump, facial grimace and arm flail. Vocal tics anything from breathing tics to whistling to words and phrases.

Tourettes is a fucking awful thing to live with. It has its funny moments, of course, some tics are genuinely hilarious. But the vast majority of the time its painful, embarrassing, mortifying, annoying and infuriating.

I’m posting this as mumsnet and the world are full of Tourettes jokes. Joking that just because you swear you must have Tourettes. Im posting this because tourettes is a massively misunderstood condition. You wouldn’t joke about other neurological conditions such as stroke or MS. But because tourettes is so hilarious (read sarcasm) no one cares about how serious it is. Ive been shouted at and threatened to be punched and beaten up. I know people online in support groups that have actually been beaten up because of something they have ticced.

I’m so glad of all the awareness that the internet brings. But it’s still not enough.

There is also very little support overall, let alone for adults. There is next to nothing for adults support unfortunately, children have more support but its still not enough.

Tourette Scotland and Tourettes Action are the two UK charities. Tourette Scotland really struggles for funding and is purely volunteered based. Tourettes Action gets more funding but still not enough unfortunately.

Anyone I ask everyone to be more aware about tourettes. And if you see someone in public with tourettes just ignore the tics, thats the preferred method.

some tics come from intrusive thoughts and others are just completely and utterly random.

You know that urge to “touch wood” when you’ve said something, it’s like that but extreme and constant. The thoughts and impulses are exhausting to control.

Be careful what you wish for. Autism awareness is one of the worst things I've had to deal with. I would much rather prefer acceptance or complete ignorance (which also leads to acceptance, because then noone knows it's a "thing").

Well I’m also autistic and I think autism awareness has been overall a good thing, and now it’s starting to move into autism acceptance.

tourettes on the other hand is still way behind and still needs awareness before we can change to acceptance.

I think I have it but I’m not sure, it may just be part of my Adhd/autism. I have both vocal (strange noises) and motor (jaw clenching and neck twitching) I tic daily but can suppress them in public most of the time, when my anxiety is high I can’t suppress them. My tics get worse when anxious. Don’t know if that is Tourette’s or not? Maybe a tic disorder or just part of the Adhd? Not sure!
I don’t swear or say words or anything. its frustrating I know that!

Adhd I don’t think has tics as part of diagnosis. But around 70-90% of people with tourettes have adhd, and your symptoms do fit, so there is potential. But obsviously I can’t say one way or another.

tics can be simple (which sounds like yours) or complex where you say words or phrases or do multiple movements combined.

70-90% if people with Tourette's have ADHD?!

I had no idea there was such a strong link!

Is there a similar link between OCD and ADHD?

I ask because Tourette's and OCD are link neurologically speaking, and a family member who has OCD can pass either OCD or Tourette's down to their child

I had OCD between the ages of 7-12ish.

My sons have Tourette's, one of whom has ADHD, and I always strong suspected I have ADHD too.

I also assumed it was just shit luck that my poor son had ADHD, Tourette's (and multiple severe allergies to boot) but the first two are so strongly linked??

So presumably OCD and ADHD perhaps?

Tourette’s, ADHD, OCB, ASD are all linked, and can co exist. I also understand the Histaminergic system is involved (the little I knew, I can’t remember) - so you can get allergies too.

We also have all these diagnoses and multiple different allergies in our family - across 4 children. The one who doesn’t have allergies was the one I mostly bottle fed - always feel that’s ironic.