Autistic DD tics driving me insane. So worried.

[SaunteringDownwards]

Dd is nearly ten and autistic. Since January she has had so much anxiety/ school refusal etc. She’s now going back after Easter on a reduced timetable.

She has had some vocal tics before, but they have always been minor but she now has a new one (I think it’s a tic) that is just driving me insane and I’m so worried about it.

She constantly tilts her head back makes a gasp/sigh “hmm” sort of sound followed by two coughs. It’s severe right now and she does it hundreds of times a day. I can’t get a GP appointment until later in the week but I’m starting to worry it could be a heart problem or lung problem and because she has had tics before I’m just assuming it’s a tic? She has no other signs of illness at the moment and is otherwise her normal self. DH is being very calm about it all but I literally feel like I’m going out of my mind, it looks like she is gasping for air.

I just don’t know what to do. It is constant and it feels like we’re setting each other off because she knows it’s making me worry which seems to make it happen more.

Any advice or guidance on what to do would be so appreciated. I don’t want to waste time in A&E but I’m so bloody worried.

It's entirely possible it Tourette's Syndrome, as this starts with tics, physical and noises. It can be a diagnosis on its own, but it's not uncommon for someone with Autism to have a higher risk of Tourette's. A friend of mine has a son who is Autistic and was diagnosed with Tourette's when he was around 10-11 years old. He's 18/19 years old now, and I know his Mum has found it challenging. Try and get your daughter to see a GP as soon as possible. Of course it may not be Tourette's but it sounds more of an anxiety issue rather than a heart/lungs problem. Regardless, it needs checking out.

My son does this too - he is 15 and autistic. Started with tics about age 8 or 9. He has 3 or 4 different tics and seems to rotate them every few months. I have never been to GP about it though just put up with them knowing its part of autism

Yes quite reluctant to take her to the Dr unless 100% necessary as she finds it so difficult but I think with the breathing I don’t have a choice but to rule out anything else. She shares a bedroom with her 16yo DD who says she never has loud breathing or gasping when she’s sleeping and almost never wakes in the night.

I should say my 16yo DD.

I knew a boy with tourettes who had quite a few vocal tics and he used to do exactly what your DD does

I understand what you're saying about avoiding unnecessary GP appointments if they are difficult for her, but at the same time if you are worried about it and that's causing a cycle of you worrying > DD's tics increasing > you worrying more because they're more frequent > DD picking up on your anxiety and the tics increasing further...maybe a GP visit would help to just alleviate some of the anxiety and calm things down in the household. At least you will know what you're dealing with.

DS used to have a kind of throat-clearing/cough tic when he was in his teens. He convinced himself he had lung cancer for a while, so even though I was sure it was just a tic, he went to the GP to be reassured. He stopped doing it eventually.

He is definitely neurodivergent in some way but not officially diagnosed, and doesn't have any very obvious tics now (in his 20s) so it doesn't necessarily mean it is the start of Tourettes.

@Fargo79 that’s a really good point. It could be as simple as him just listening to her heart/lungs to make sure there’s no emergency. It’s also highly unlikely she wouldn’t tic at the appointment so he’d be able to see it for himself. No idea wtaf I will do if he wants bloods taken though or anything else invasive as she just wouldn’t comply.

Yes I’ve read they’ll only consider it Tourette’s if you have consistently had tics for a year. Hers have come and gone before but she had been tic free quite a while before this new bout started. Her dad and elder sister both have facial tics also, her dad has had a facial tic as long as I’ve been with him (20 years).

I think see the GP and get an opinion. If it is something of urgent concern and bloods absolutely have to be taken, it'll be a case of either prescribing her a sedative to relax her beforehand or just plain holding her down.

I've had to do it before when my DC3 had to have bloods taken. He was 8 and has autism. You could hear him screaming down the hall. It was horrible but necessary.

I had to do this to her for an eye exam and it traumatised us both. I don’t think I could ever hold her down for a medical procedure again it still makes me cry when I think about it now.
She had surgery last year but coped with that fine as they just put her under. Anything short of that is becoming almost impossible as she’s almost as strong as I am.

It certainly sounds like a tic, physical exercise helped my DD get over hers, similar age to your DD. Doesn’t hurt to get checked but I wouldn’t be too worried. Sleep, exercise and a multivitamin wity enough magnesium can all help.