Tourettes - is a formal diagnosis important?

[PragmaticWench]

DD is coming up to 9 and very clearly has tourettes. I've read a fair bit about the diagnostic criteria and she more than meets it.

She's had multiple tics at any one time since the age of 5, both physical and verbal, plus echolalia. The tics ebb and flow in their intensity, usually very frequent when a new tic develops (say every 20-30 seconds) and she has multiple tics that can run in a sequence, say a shoulder lift then a head twist then an eye roll.

School have now asked about it, plus a number of family and friends and we've just said that everything we've read says not to mention it to DD as that can increase the tic frequency. For me, it's just part of who DD is and so far, she's not seemed bothered by it and her friends haven't mentioned it or picked on her for it.

I'm aware tics can hugely reduce in teenage years, and aside from medication if they're very, very bad then CBT is the only thing you can do if you want to reduce them.

Am I unreasonable to not bother with a formal diagnosis for DD considering it doesn't seem to bother her? She already has allergies, asthma and coeliac disease so has plenty of labels in her life.

Not sure why this is turning in to a touchy debate, it's not 100% black and white.

Probably personal experience of doing over 40 years undiagnosed has made me a bit touchy about the subject. Choosing not to have a child assessed when they have 'something' is a crazy way of exercising some control; only there is no control, the child still has Tourette's. Going through life without solid base knowledge of oneself is damaging. I don't think people seem to realise how important it is to know and understand yourself. A 'chat' about how a child has tics just isn't enough. So while posters may think it doesn't matter, I'm the flip side of the coin saying actually, it really does matter. That's ok.

always said 'you might have it, you might not, it makes no difference at all to the people in your life who are important to you'.

It might make a difference to her though. And no one should ever be more important to you, than you. It doesn't matter that mum/dad/grandparents etc think it makes no difference- they are not the ones living with it internally. They are not the ones who need to understand.

He is oblivious to them so I’m keeping an eye on them at the moment.

No, he isn't.

It might make a difference to her though.

Then it's simple.
Ask the DD if she wants to go through the long stretch for a diagnoses.

@ReginaSpaghetti99

Your 13 year old isn't oblivious to his own tics. He may not have mentioned them but that doesn't mean he isn't aware. Inside he could be really struggling with this. It's damaging. Please talk to him - not raising the subject isn't going to help

@ItsAllAboutTheLighting

It might make a difference to her though.

Then it's simple.
Ask the DD if she wants to go through the long stretch for a diagnoses.

I don't really think it's up to children to make this decision.

She shouldn't need a diagnoses for teachers to support her/understand

Of course you're right, but unless your school has an outstanding SEN team and is 100% on board with assessing every child's additional needs, then you can be facing an uphill battle. Sadly as pp have written, even with a formal diagnosis some schools can be utterly shite at dealing with any additional needs.

@Eltonsglasses

always said 'you might have it, you might not, it makes no difference at all to the people in your life who are important to you'.

It might make a difference to her though. And no one should ever be more important to you, than you. It doesn't matter that mum/dad/grandparents etc think it makes no difference- they are not the ones living with it internally. They are not the ones who need to understand.

Huh? You seem to be misunderstanding: we have discussed every step of this with DD. Every step. We haven't made decisions on her behalf without her knowledge, we made the decision as a family.

At the moment, she has a stammer. That's it. Knowing what pressure CAHMS is under, what support do you think she might get? None.

In fact, not none. The SALT saw her a few times.

If she need additional support for school - you won't get much without a formal diagnosis....

FWIW I am firmly of the belief that diagnoses help because why not know for sure? Not having a diagnosis isn't going to mean no-one notices the tics.

Ds1 has ASD (diagnosed); dyspraxia (diagnosed) possibly tourettes (undergoing assessment); anaphylactic allergies (diagnosed); ADHD (on waiting list for assessment). we talk about those things as being part of his normal life. if we don't talk about it he will think that a fundamental part of him ought to be shameful or hidden. These things are as much a part of him as his gorgeous olive skin and brown eyes.

Huh? You seem to be misunderstanding: we have discussed every step of this with DD. Every step. We haven't made decisions on her behalf without her knowledge, we made the decision as a family.

But she is 12? Discussing it with her is great but I don't think a 12 year old has the ability to fully understanding the implications of having a diagnosis v not having a diagnosis.

At the moment, she has a stammer. That's it.

I'm definitely misunderstanding as you mentioned other tics and loud swearing last night.

I don't really think it's up to children to make this decision.

So making the decision by the parent is a power trip, as you described above. (Or at least, it's a power trip if they take the decision that you don't agree with).

And involving the child isn't ok either?

I'm not sure you know how you really feel about this.
And I also feel your bitterness with, I assume your parents ignoring your tics is clouding your feelings.

Did you tic as a child and your parents ignored it/blamed you?

Did your parents support you?

He is aware of his tics.

@ItsAllAboutTheLighting

I don't really think it's up to children to make this decision.

So making the decision by the parent is a power trip, as you described above. (Or at least, it's a power trip if they take the decision that you don't agree with).

And involving the child isn't ok either?

I'm not sure you know how you really feel about this.
And I also feel your bitterness with, I assume your parents ignoring your tics is clouding your feelings.

Did you tic as a child and your parents ignored it/blamed you?

Did your parents support you?

I think I shall bow out now. Misquotes, accused of being bitter and massive assumptions about my life are just not what I need. I was trying to post from the opposite POV, that's all. Don't need ripped apart for it.

@RestingStitchFace

If she need additional support for school - you won't get much without a formal diagnosis....

In every school across the country?

Big wrong sweeping generalisation.

Our child has ASD, Learning Disabilities and Tourettes - we always felt the same as OP - diagnosis does not make any difference to the condition or the support you get.

However it is 100xs easier to get diagnosed as a child than as an adult. As our child moved into his teens we realised a diagnosis would help in post 16 education, employment and the far harsher benefits system. We now have diagnosis and it has not made a jot of difference now but it can take years to get one and it is now there if he ever needs it as an adult.

For Tourette's I would wait and see - it she still has problems in a couple of years then get a diagnosis- one of my closest friends is 51 and has never been able to work due to TS and the diagnosis has helped her navigate through benefits.

@Eltonsglasses

Huh? You seem to be misunderstanding: we have discussed every step of this with DD. Every step. We haven't made decisions on her behalf without her knowledge, we made the decision as a family.

But she is 12? Discussing it with her is great but I don't think a 12 year old has the ability to fully understanding the implications of having a diagnosis v not having a diagnosis.

At the moment, she has a stammer. That's it.

I'm definitely misunderstanding as you mentioned other tics and loud swearing last night.

Yes and at the moment all she has is a stammer.

@BlameItOnTheBlackStar

Hence why I agreed I was misunderstanding.

Ah, ok.

This thread has got weird. I'm off out now but when I'm home later I'll message those asking about cannabis oil.

Happy Sunday to all of you

It’s definitely worth getting a formal dx. Both my sons have one.

It’s good to rule out other more sinister things - DM was convinced DS2 had a brain tumour, but we could say it was just Tourette’s (just like DF!)

Dx brings a personal understanding to the young person and should stop teachers commenting on the tics at school. Both my children have benefited from reading “ Why Do You Do That?: A Book about Tourette Syndrome for Children and Young People”. It clearly explains what’s going on. It can be scary to have tics and not know why. That alone can reduce anxiety from having some understanding.

The message about ‘ignore’ is to do with not talking about the tics as they happen. Tics can be suggestible, so mentioning them as they happen can make them worse. But you don’t want to ignore the whole condition and pretend it’s not happening - it clearly IS happening.

Good luck!

Btw it can change a lot over time. DS1 essentially grew out of TS after his puberty growth spurt, and DS2s tics are much much milder than they were, but still there. Neither has experienced any issues from the condition.

Just one other quick note: when I mentioned to DD about her swearing out loud, she absolutely broke down. She knew she was doing it, but thought she was keeping it inside or whispering it.

She knew though.

@BlameItOnTheBlackStar

Just one other quick note: when I mentioned to DD about her swearing out loud, she absolutely broke down. She knew she was doing it, but thought she was keeping it inside or whispering it.

She knew though.

I've been in the same position.

As the PP above how believes her son doesn't know.
I've felt like that before. Hoped that DS didn't know.
They always know, DS also thought his were less noticeable for others.

But they always know

Tics in Tourette Syndrome are very often only the aspects you can see. There may be much more going on that if explored and formulated via diagnosis, could support understanding of herself and facilitate her learning. It also really helps others who don't understand TS at all to appreciate it's not all about tics.