Suspected autism and flying

[Fly3344]

I have a holiday booked and it will be my 5 year olds first time flying. I think my child has high functioning autism, I set up a meeting with school and they agreed they have noticed a few traits but they want to wait a see if there’s enough evidence to warrant a referral. Child is very well behaved at school so I believe they are masking , child currently displays extreme anger amongst other issues. I’m very nervous about the flight I’m not sure if they’ll even get on the plane. I’m guessing a can’t access any additional support at the airport as we have no diagnosis as of yet?

What sort of support do you think your child might need? Would he have problems standing in a queue, for example, or is the noise of engines etc likely to be a problem once on board?

Is he excited to be going on holiday, or is he picking up on your nerves, and expressing concerns?

It would be worth contacting the airports you will be flying from, and asking what adjustments they can make, and what evidence they need to see if so.

I would phone the airline customer service you’re going to be using to explain your concerns and see what they suggest. Your DS probably will not be entitled to free passenger assistance without a diagnosis.

You can request additional support for your child’s needs, you aren’t going to be asked to produce a diagnostic letter to prove it. But you need to establish what the needs are and what assistance will mitigate them. You can make an advance request for special lanyards, queuing priority, and you can pre-book e.g. an aisle seat if you feel that being penned in might be stressful for them.

If you’re worried they may not even get in a plane or will have a meltdown once on board then have you considered paying for something like a fear of flying course, so that it won’t be a strange new experience and DC will already know what to expect? I’d be cautious of taking a child with extreme anger issues on a passenger flight without advance practice, it’s going to be incredibly unpleasant for all concerned, not least because air stewards need to act to keep everyone safe rather than simply respond sensitively to your child.

Contact the airline.

what do you think would help? I would look at social stories to help prepare and maybe look at some videos of the inside of the plane and similar.

plan to have plenty of mess free activites and safe foods (check restrictions) for the flight.

What do you think might trigger a problem?

The ques and large crowds cause overwhelm which can turn into anger and may run away. I’ve been positive whilst talking about the airport and said they’ll be lots of sweets and ipad/toys to play with on the plane. I’m really trying not to show my nerves, I think they’re partly excited but also worried as it’s all new and unknown. Loud noises can trigger so I’m bringing ear defenders.

Sunflower lanyard.. the cabin crew will be great with him.
You can book assisted passage. You get the option to board first or last.. plus first entry through security..
My Grandson (ASD)is now nine.. been flying since he was two every year ..
Honestly hand on heart I'm sure he will be fine.. and probably excited.

Another vote for a sunflower lanyard. My older DC doesn’t have an official diagnosis yet but is definitely autistic. They find comfort from the lanyard because they know if they feel they can’t talk or are panicking people will give them time and space without them having to explain.

Sorry just to add when I say anger it will be directed at me not to members of the public i obviously wouldn’t put people through that.

Thanks all the lanyard sounds like a great idea if I can get them to wear it!

You can always wear the lanyard if he won’t. I’m not a fan of the lanyards in general but they do seem to work well in airports and similar

Have you considered paying for an airport lounge? It would be quieter and not so crowded whilst waiting for boarding.

It may also be worth looking if you can pick up a SN buggy second hand. Will be helpful in the airport and probably when away

My DD wears ear defenders for the noise of the crowd in the airport and, prior to travel, we watch a social story on YouTube or a CBeebies type episode where the character gets a bus/train/airplane (whatever relates to what we'll be doing). Other than that, I think the lanyard will be useful as she gets older (for now, I don't think she'd like the feel of it around her neck).

My DD is 17 now .. high functioning autism.

Distraction is good - headphones and tablet, let them choose & pack a bag for the flight.. books, drawing etc.. and snacks. Walking down the plane, when you are onboard (so they don’t feel trapped).. a list of things to spot at the airport.

Oh I also bring a packed lunch/snack so that she can see we'll have at least 1 familiar food item with us as well (she gets very anxious not knowing what she'll eat/drink)

When we go on holiday I always prepare by showing DS videos of the airport and plane so they can see what it will be like, explain the process for security etc and generally prepare them in advance for what to expect so they have an idea before they get to airport. I also usually do the same for any hotels or places we are staying. You could also do a printed booklet with pictures as a visual guide

Last one (sorry, I'm typing as it all occurs to me), I try and prep myself- if I'm a bag of nerves then it'll just feed DD's anxiety. I try not to be too excited either (that pumped up energy can be a bit much for her as well). I do say to her "I think it will feel very fast when the plane takes off" "the pilot will keep us very safe" I find that she then parrots these phrases back, it helps her put words to her experiences.

No harm in asking for special assistance if you think it'll help. You may or may not get it. We booked it last time but didn't use it. There were a load of people waiting for it in a special area, not enough seats for them all, and DS was happier in the queue which was more predictable and made more sense to him.

We take some sort of tech with a step counter and get him interested in how many he's done. When we've been delayed in queues we have set him up doing circuits alongside the queue and updating us on his step count. Wearing a heavy rucksack is good for regulation too. Ear defenders. Lanyard as PPs have said, and your own "vibe" makes a huge difference.

I would highly recommend flying from a small airport if possible, but all in all we've found it fine. Once you've done it once it becomes part of the new holiday routine, with all the positive associations that brings.

Lots of good advice already, I Wouldn’t worry about not having a diagnosis, Ime you don’t need one, just contact the airline/airport services and explain your concerns. I flew in the summer with a teenager with suspected ASD but no diagnosis. They got very stressed at the amount of people waiting to board the plane. I explained to staff and they were more than happy to let us board before anyone else and took us to a quieter area. We found ear defenders to be invaluable. I think it may be an idea to try and start preparing your son, videos, books, maybe a visit to the airport etc? For what it’s worth my other teenager with diagnosed ASD refuses to come on holiday with us and now the one that came in the summer doesn’t want to go this year. They are happier at home.

We've never been asked for proof when booking special assistance - you can go through the fast track queue and (if necessary, though it's probably not best) board first (boarding last is better as more running around).

Beware coming back home. We have found Manchester and Liverpool were both fine but France/Spain not helpful at all - they only understand people needing wheelchairs, not people needing space, quiet and lack of queues, and made us wait ages to be escorted through security and even then wouldn't let all 4 of us go through fast track.

I also highly recommend going to a plane visit (airfield, half-a-plane, or similar) to get your DC familiar with the inside of the plane.

Take some decent noise cancelling headphones - it’ll drown out the noise of the plane and means other passenger won’t have to listen to the iPad too. Win win!

I was lucky with mine that aviation was his special interest, he couldn't get on the plane quick enough. I still have vivid recollections of him age 7 travelling to Cairo sat next to an Egyptian gentleman. He was telling him all about the type of plane we were on, and how it had been grounded in the past due to explosive decompression, and he hoped they'd changed the rivets that caused the problem on this particular plane. By the time I clocked what was going on and stopped him the poor guy was a little pale.
I'm not sure there's a huge amount you can do to prepare him, most plane programmes involve them falling out of the sky. Maybe one of the avgeek YouTubers if he's into that sort of thing (Noel Philips or Josh Cahill) would get him interested. You could get express security and book a lounge to make the airport experience a bit less stressful.

What support do you think you need? My dd has autism, was barely verbal at 5, yet she flew 3 times a year at least without issue, she could name every airline by logo by 6!

I have a similar masker. We've travelled since he was a few months old.
This was our normal till he got a bit older and could find different ways.
He would be extremely "well behaved" during the whole airport/ check-in/ flight part of the process.
We would establish a "rule" to attempt sleeping on flight, if possible. This started because of his age when he first flew but it also helped us later because it mitigated slightly the energy and stress he would go through while masking through the parts that he found difficult.
Arriving at destination and going through passport control was usually challenging, especially after the whole flight, as was waiting for luggage, but nowadays families are usually prioritised.
We would expect some sort of meltdown especially if specific unforeseen events had occurred ( think delays/ queues) as soon as we were alone in the family, out of sight of others.
We found that a clear run through of all steps in the process of flying was helpful， including possible setbacks, so he knew exactly what parts came next. We would talk about the fact that he would probably feel overwhelmed at some point and that sleeping would help with this to some extent.
This was years ago now, so we didn't have the stuff there is now, but had it been now we would have looked up everything on line beforehand to show exactly what would be happening.
I never doubted however that he wouldn't get on the plane or have a meltdown mid flight because he'd been flying since he was a couple of months old .I think that had that been a possibility I might have booked a course at the airport prior to flying. We live abroad so it was essential for us.