Flying with Tourette’s - can anyone reassure us?

[alloalloallo]

DD (16) has Tourette’s

We’ve booked our first holiday abroad for this summer since she developed her complex verbal and motor tics.

She’s has Tourette’s with coprolalia (swearing/inappropriate verbal tics) so is quite nervous about her verbal tics while at the airport/going through security/on the plane.

I’ve spoken to the airline who have told us there weren’t procedures for Tourette’s so to try to speak to staff at check in when we get there.

She’s excited about going away, but is just so worried that she’s going to announce to security that there’s a bomb in her bag or something and will end up getting arrested.

We’ve got her diagnosis letter and she has an ID card from Tourette’s Action (that you have to have proof of diagnosis to get) so there’s not much else I can do - I was kind of hoping they’d put a flag on her name or something.

I’m sure it will be fine in the end, but as it’s the first time she’s understandably apprehensive

No idea but just sending you support, dd age 15 had a tic of saying "there's a bomb" for a while which would be extremely tricky on a flight or in an airport. I'm sure having proof of her diagnosis will help in case of any problems.

Can u do any familiarisation with her first so it's a less stressful process ..
Going to the airport/getting the tube if necessary etc

Does she have anything she can have to hand that reduces her stress levels..pack her hand luggage etc ear defenders/sweets for the Plane..for take off/landing
I know pressure change and stressful situations can not help some people who have tourettes ..

Most airlines have special assistance support which maybe helpful..can be early/late boarding etc should be on their website...if you think that could help...
Some airports did as well (lisbon for sure) so it maybe worth a look for quicker ques etc..
Hope you have a lovely trip!

No advice but hope you have a lovely holiday. You'd have thought the airline would have a procedure for tourettes, in this day and age.

Is there a way of calming her so they are less likely eg listening to music through headphones or chewing gum even? unfortunately whatever letter or card you are carrying they would have to react to anything said about bombs.

One idea is to book special assistance so you are fast tracked through security. Does talking to her about something she likes avoids tics? Not Tourette's but we talk about going to the cafe for cake and what kinds of cake to dsd to calm her down, she's cake obsessed.

Thanks all

She has ways of calming her tics - listens to music, she carries squashy things, fiddle toys, wears an anxiety ring, etc, but unfortunately anxiety and stress always make her tics worse and it’s always stuff she knows she can’t say/totally inappropriate

It’s one of those things that no matter how much you prepare her for, or practice in advance, the verbal tics are totally uncontrollable - she can suppress her motor tics to a certain extent, but the verbal ones just pop out.

I’ve spoken to the airline and they’ve said there’s nothing they can offer her - I was hoping they could at least put a flag on her name in advance or something but they said no. I have to try and speak to someone at check in

It’s the first time she’s flown since she was diagnosed, hopefully once she’s done it a couple of times she’ll be less apprehensive

It's difficult because I imagine if someone says certain words/phrases then the airport staff have to follow specific procedures. Can you imagine if they didn't and it turned out to have distastrous consequences. Very challenging for all concerned. I hope it all goes well.

www.disabledtraveladvice.co.uk/air-travel-people-tourettes-syndrome.html

I'd also look to book in Passenger Assistance to help you get through security etc. www.caa.co.uk/passengers/prm/passengers-with-disabilities-and-reduced-mobility/

@savehannah

No idea but just sending you support, dd age 15 had a tic of saying "there's a bomb" for a while which would be extremely tricky on a flight or in an airport. I'm sure having proof of her diagnosis will help in case of any problems.

If it helps — my cousin worked in airport security for a long while. They had significant training to cover people saying things like this. And it was treated with kindness and decency in situations like yours. She said it actually came up more often than most people realise. It was other passengers who would sometimes be dicks about it.

Try speaking to the airport instead.

Thank you!

I’ll give the airport a call tomorrow and see what procedures they have in place.

The airline (Ryan Air) say there’s nothing they can do.

We’ve pre-booked our seats and she’s got a window seat with me and DH next to her so she’s tucked away - there’s quite a lot of us so the rows directly in front of and behind her are all our group so the flight bit isn’t causing too much concern. It’s security and boarding. Also, when we get to the other end.

It’s not just stuff about bombs - her tics can be wildly inappropriate in other ways and the more people pay attention to them, the worse they get.

Thanks!!

I like to watch airport programmes and have actually seen a young lad with Tourette's on the show shouting about bombs etc. The staff all seemed to know about his tics and shouting about bombs and they all seemed to take it in their stride. No one seemed to be worried that it was true and even when he was on the plane shouting everyone including the passengers were calm. I'm sure there were probably one or two that felt nervous hearing it despite there being no actual risk.

Just let the staff and crew know and as pop's have said ask for special assistance. I hope you all have a lovely holiday!

I've found this article - sorry for Daily Mail link but this is the lad I was talking about...

www.dailymail.co.uk/health/article-3388474/Footage-teenager-Tourette-s-shouting-BOMB-plane-goes-viral-17-year-old-s-tics-going-airport-security-claiming-m-terrorist.html

No advice re tourettes but dc has a medical condition which means we need to organise things both for the journey and at the hotel.
At point of booking we were given a contact number for hotel and also one for the assistance team for the airline, they document everything, told us what letters we need from medical team and also sent us an email confirming what we told them and asked us to print it off and present it as required while in airport /on plane.

There will be a ground services agent at the airport, Servisair or similar. Airlines rarely manage ground services themselves except at major hubs. Contact them and book assistance through the airport if that would help. Alternatively, will she wear a lanyard? The sunflower lanyard alerts people to the fact your daughter has an unseen disability, and they'll make accommodations accordingly.

Thank you!

I’ll contact their airport in the morning - we were originally told to speak to the airline as they’re the only ones who can make amendments to our flight booking.

Yes, she wears a lanyard, she has a Tourette’s Action one as well

I do remember seeing that documentary I think, I’ll see if I can find it, she may feel a bit more reassured.

She belongs to a TS group and a fair amount of people on there have had negative experiences flying - to be fair, mostly from members of the public rather than security/airline staff

Thanks!

I’m not normally one for medicating for Tourette’s, but would some diazepam help as a one off?

Unfortunately if she says there's a bomb in her bag then no amount of diagnosis letters is going to prevent an arrest. Terrorism prevention measures are there for a reason and is taken INCREDIBLY seriously, as you'd expect.

It sounds like she's going to find this experience extremely distressing. Why are you putting her through it?

@BlondeWidow

Unfortunately if she says there's a bomb in her bag then no amount of diagnosis letters is going to prevent an arrest. Terrorism prevention measures are there for a reason and is taken INCREDIBLY seriously, as you'd expect.

It sounds like she's going to find this experience extremely distressing. Why are you putting her through it?

This isn’t true. Like the previous poster I saw the tv show with the lad with Tourette’s who shouted about having a bomb all the way through airport security. He wasn’t arrested, he was allowed on the flight.

Hope it goes ok OP. A friend of mine has Tourette’s , he’s quite laid back about it. Doesn’t bother him if people look. He’s had to yell out once on public transport that he had Tourette’s as he thought he was about to get lynched due to what he’d shouted at someone. And then they were fine about it. Inthink people are generally understanding.

So glad to have discovered this thread - my DD (13) suffers in very similar ways - her current tics involve shouting ‘Nazis’ and ‘dickheads’ and then ‘Mary Poppins’ and whistling, coughing, and heaving so hard she nearly vomits - poor kid, as if being a teenager isn’t hard enough! Helpful posters like @BlondeWidow come along and point out the 100% chance of arrest upon flying - we won’t have a holiday abroad, ever then?

@alloalloallo

Thank you!

I’ll give the airport a call tomorrow and see what procedures they have in place.

The airline (Ryan Air) say there’s nothing they can do.

We’ve pre-booked our seats and she’s got a window seat with me and DH next to her so she’s tucked away - there’s quite a lot of us so the rows directly in front of and behind her are all our group so the flight bit isn’t causing too much concern. It’s security and boarding. Also, when we get to the other end.

It’s not just stuff about bombs - her tics can be wildly inappropriate in other ways and the more people pay attention to them, the worse they get.

Thanks!!

I work in airport Ground Services and there are no procedures unfortunately. A lanyard will help the staff be aware of a hidden disability but sadly, despite specific training, the Pandemic has made most people associate the Sunflower Lanyard with Mask Exemption. Your best option would be to book Passenger Assistance. However this won't prevent an arrest if those kinds of words are said in front of Border/Transport Police or Airport Security. Regardless of disability I'm afraid. I would just try to do whatever you can to make her feel as relaxed & calm as possible.

@NellyDElephant

So glad to have discovered this thread - my DD (13) suffers in very similar ways - her current tics involve shouting ‘Nazis’ and ‘dickheads’ and then ‘Mary Poppins’ and whistling, coughing, and heaving so hard she nearly vomits - poor kid, as if being a teenager isn’t hard enough! Helpful posters like *@BlondeWidow* come along and point out the 100% chance of arrest upon flying - we won’t have a holiday abroad, ever then?

I'm not responsible for Counter Terrorism Measures love. Would you rather we all lie to OP?

Because my 13 yr old DD is a huge terrorist risk?! I’d like to hope that the very important Counter Terrorist Measures Team have some more legitimate, actual terrorists, to deter at the airport, ‘love’

I’m fairly sure the police and airport security can use their brains, common sense and judgement.

@NellyDElephant

Because my 13 yr old DD is a huge terrorist risk?! I’d like to hope that the very important Counter Terrorist Measures Team have some more legitimate, actual terrorists, to deter at the airport, ‘love’

🤦🏼‍♀️ Nice twisting of words there, well done!

Not how Aviation Security works. It's a blanket rule. Everybody who works beyond the security point in an airport has to have a week's Security training. We were told in this training by Transport Police that even if a 95yr old with a cane says they have a weapon/bomb or even jokes about being any kind of threat, then it is to be treated just as seriously as a young adult male for example. If a young child says it then the parent is taken with the child to the security office and the parent questioned intensely. If necessary then the parent/s is placed in custody and the child collected by a social worker and looked after until the parent is released - I witnessed exactly this scenario unfold once. The parent found the entire situation hilarious and just dug himself deeper. No idea how it resolved itself but the plane was delayed whilst their bags were removed (no baggage can legally travel without it's owner onboard since Lockerbie unless lost baggage).

All I'm trying to do is give my professional take on what would happen. Worst case scenario I suppose.

Hopefully it's all irrelevant!

He won’t get arrested for saying bomb believe me, I work for an airline and we’ve had it countless times. She will most likely be asked to repeat it again and if she does then they’ll be questioning. Just explain about the Tourette’s and it will be fine. I’ve had people without it saying they’ve got a bomb and even some one saying they had a gun in the bags. We expect the worst so do not worry.