Do you have difficulty travelling if you are an adult with autism?

[Physalisosewater77]

Please can anyone help? I am very embarrassed about this situation and for allowing it to go on so long.

To be clear, I am not diagnosed at sixty years old. To all intents and purposes I think I appear as though I function like other people. But I lead a double life. One public and one private. One supposedly competent. The other deeply dependent on my dh.

My teen daughter is going through assessment. I have had sensory issues since childhood and have been a recluse by preference pretty much all of my life. I did hold down a job in a busy organisation at one point when I was younger but it was a job which required being shut quietly in an office quietly on my own so it suited me! My husband drives me everywhere, when I go somewhere which isn’t often. I live in a remote area and am pretty much self sufficient and I am content except when I have to travel which we all do for funerals, family, work sometimes.

Three things that I find particularly difficult:

Large supermarkets which I find too loud, too bright, too many smells, too much visual stimulus. On good days I can manage if I don’t have to queue. Very often though it’s too much for me so I grow my own or have things delivered or rely on farm shops.

Travelling outside of my 10 mile driving zone on my own on public transport and in taxis. I get violently sick on boats, coaches and sometimes in the back of cars. The swaying stays with me all night and sometimes for a few days afterwards and doesn’t wear off. Trains I can just about manage but I very often have panic attacks. Aeroplanes are out of the question although I used to fly occasionally when was young and had more energy to fight the panic.

That’s not giving you the whole picture though because alongside the physical sickness I have deep intense fear of any type of travel. I have no rational explanation for it. Its difficult to describe but I don’t in my core feel safe when doing so. The physical fast movement of being in a fast car or plane disturbs me. And I have a deep fear of the transitions from train to train for example or from motorway service station to the next stop. Basically being temporarily “homeless” and having nowhere as a retreat in case of difficulty.

The fear I feel is equivalent to that faced by someone about to be run down by an enormous ten ton truck. I feel beyond panicky in airports and train stations to the point where I faint or throw up. I can’t seem to follow the signs and get lost and panic. I miss the big overhead signs and misread the small ones. I can’t edit out my route ifyswim or prioritise what I have to do next.

I have no innate sense of direction and despite having a phD in an arts subject I sometimes have difficulty telling the time from a clock face with numbers and can’t do simple mental arithmetic to tell me that the next train will be arriving in 40 minutes for example. All of this makes me sweat and gives me an awful stomach upset which is difficult to manage when travelling from place to place.

I feel deeply embarrassed about all of this because I am otherwise a reasonably intelligent person. I know in order to achieve hard things I need to master my emotions and apply rational thought but in practice I can’t do it. I don’t seem to be able to apply rational sense to any of it.

Third thing is cinemas. Too loud. Too much visual stimulus (to the point of nausea). Too claustrophobic.

The reason I am posting is that I have to attend an important family event in France this summer by Eurostar and then two trains beyond that. I have to and want to go for the sake of my family. But I don’t know how I am going to manage it as my dh can’t come with me on this occasion and I am aware of the need to become more independent of him anyway.

What I want to know is, because I think it will help, is travelling often difficult for adults with autism or am I just truly incompetent and weak?

And if it is a trait of ASD ; btw I know autistic traits are as individual as autistic people themselves, are there any strategies you use to help yourself travel independently?

Sorry this post is so long. Thank you very much.

To be clear I do drive myself locally within about a 10 mile radius although that’s not much help in this situation.

And I very sorry if I have offended anyone for posting when I haven’t been officially diagnosed. I just thought people on this board might have more of an understanding of my difficulties because my close family don’t understand at all whenever I have alluded to it, which isn’t very often.

Ah well, obviously just me then. I suppose that answers my question in a way.

Hi OP, I'm not diagnosed either but am pretty sure I have autistic and ADHD traits. I don't have difficulties as severe as yours, but do find I'm even more sensitive to noise now (I'm mid-50s) than I was when younger. I think that's a common thing as it's often more difficult to separate out the sounds we need to attend to from the rest as we age.

Cinemas.... forget it (don't enjoy crowded places anyway and they're far noisier nowadays), supermarkets I find bearable but I never linger and fortunately my local one doesn't belt out music or too many announcements.

On to travel: I'm a real worrier so endlessly fret about possible cancellations etc. As a trip nears I feel as if I'm facing a firing squad, rather than doing something I chose to do. For over a decade when younger I went nowhere further than a 20 mile bus ride as the whole idea of travel just filled me with panic. I'm not like that now and often go places alone and always holiday alone, though infrequently, but I do still worry and over-plan things. I never worry about being somewhere alone, it's the travel component and the difficulty with the transitions between parts of the journey involved that bother me.

Anyway, on to your upcoming trip. Eurostar have info online specifically for customers with autism (just Google "Eurostar autism" which may help. I believe you can also contact them in advance to request help on the day too, such as priority boarding. I haven't had to ask for help myself but when I've travelled with them a few times I've found it a pleasant experience. Even in standard class the seats are quite roomy and you can keep your luggage with you (another worry of mine) in the rack above you, as long as it's not too big. Luckily I wasn't near noisy passengers and so on. People often swear by using noise-cancelling headphones so you could consider that. WiFi on board is fairly unpredictable so bear that in mind.

Quite a few other French rail routes now come under the Eurostar umbrella, since their merger with Thalys. I don't know if you've already booked your full trip but, depending on your destination, you may be able to book a through ticket, which could be reassuring. For their trains to Belgium and the Netherlands, you can add on an "Any Belgian/Dutch station" ticket at the time of booking, so I assume the same applies to France. Apologies if you already know all this.

I'm not sure if anything I've said is of any help. I appreciate your difficulties in this regard are worse than mine (I don't get travel sick for example) so I hope I haven't sounded too flippant. I just didn't want to ignore your message as so much of it rang a bell with me.

I really hope your trip goes well.

Oh OP, just seen your last post, which made me smile. I'd been typing a long time 🙂 Rest assured there are many people with similar problems... This board can be very quiet, as you may know, but sometimes messages get a bit more traffic after a few days.

Me again. It might be worth seeing your GP with regard to the anxiety and sickness you experience with travel, even if you only seek help for this particular journey.

Also, do you find that writing down each stage, even very minute ones, helps to reduce the extent to which you feel overwhelmed? That's helped me before: if I force myself to just focus on each stage of a task, or in this case a journey, it can reduce the anxiety and catastrophising that I'm prone to.

I can't help with travel because I don't share that difficulty, but I have problems in supermarkets too. Some have "quiet time" where they stop the music and dim the lights. My local Lidl doesn't play music ever, don't know whether that's a chain-wide thing but I find shopping there much easier than anywhere else. Sunglasses help me. You can get "overglasses" types that go over your prescription glasses online.

Loads of older women are being diagnosed later in life. I was one of them. If you show autistic traits and you find that coping techniques used by autistic people help you, then use them whether you are diagnosed or not.

As for posting here, the forum header says Others are welcome to post but please be respectful.

Thank you for helping me to feel less of an outlier VitoCorleoneOfMNMafia! I will try my local Lidl.

Treesatsea thank you very much indeed for taking the trouble to post in such detail! You sound the very opposite of flippant. And I very much appreciate your very helpful advice! I didn’t know that this board can be quiet, so I will be patient! My trip isn’t until August! 😀

First, I am like you in that I actively like being alone in general life. I just find travelling itself very difficult and scary alone. I have no idea why when I have faced quite a few situations isolated in the countryside which could arguably be described as more scary than sitting on a train. There is no rhyme or reason to it. That firing squad feeling definitely resonates! 😄

Second, I think you are right about seeking medication especially for this trip. And focusing on each stage is good advice! I do use compartmentalisation strategies to help me with other aspects of life. It’s just when I am travelling that the physical symptoms upset me to the point where my emotions take over my rational thought.

I’m mind blown that Eurostar provide advice for passengers with autism! This fact alone gives me hope! I will
look in to it. Thank you!

All of this this makes me wonder if there still is some point in getting a formal diagnosis even at my age.

I have OCD, ADHD and I’m having an autism assessment. I have never had an issue with supermarkets, but cinemas used to give me panic attacks, and I get pretty bad motion sickness in cars, buses and coaches and definitely can’t travel backwards. I’m fairly scared of flying (and I watch too much Air Crash Investigation) plus it is way too loud and exhausting in every way. Plane travel definitely gives me the firing squad feeling. These days I really avoid it. I know what you mean about not liking travel transitions as well. I hate it when the car stops and it’s time to get out for example. Driving is pretty impossible for me. Travel has positive associations for me though so overall I would say I like it but I just need to plan quite carefully for it to be enjoyable! Therefore we are fairly different so I’m not sure if my thoughts will be much use to you, but here they are…

I actually adore trains and find them interesting, beautiful and find their motion calming. Liking them at that level helps! I have a Eurostar trip booked too. I’ve done quite a big European train trip in the past around 5 countries. The ADHD side of me really benefits from the novelty of seeing new places, but I also want predictability. I planned the route etc. myself and and I would say making it all pleasant involved very careful planning around schedules, my luggage, my money, my clothes and so on. I had essentially 7 versions of the exact same outfit to wear, which was well considered so that I would never be too hot or too cold because that’s an issue for me. I studied everything on the map and I put together a beautiful grid of the train times, including all changes and everything, plus a load of other information, like the ticket prices (though I booked all tickets individually in advance), where we would stay and what we would do. You can learn so much in advance about what your trip will be like - you can often look up the trains you will be on and where your seat is within the train, and you can watch youtube videos of people making the same trip which often include lots of useful examples of how things will go with ticketing etc. So I had a really full picture of everything at every level - from the satellite view of the trip across Europe, to the internal experience of the trains and so on. Full disclosure though half way through the trip the swaying motion was stuck with me 24/7 and I did start to panic that I had developed some kind of neurological condition, which my DH had to really talk me down from, so planning doesn’t solve everything. Just once in the trip we faced a train cancellation and had to change our travel plans very slightly and I was happily able to treat this as “an adventure” because my background stress levels were fairly low! Also we did book advance first class tickets where affordable and the extra space and calm was worth it for sure.

So I would recommend extreme planning and preparation. Learn the map, learn the schedule, have it all on paper or carefully organised in your phone, preferably both! For me, I turn this kind of thing into a project/ hyperfixation.

I'm pleased my reply was of use. As you say, there is no rhyme or reason to such problems. My rational mind can easily deal with potentially large travel issues, like a crash, as I know it's vanishingly unlikely to happen, so why would I worry... Besides, I'm too busy using all my energy fretting about whether my ticket will open the barriers at the station.

That Eurostar page is great help for anyone anxious about travelling as the videos guide you through the process step by step. Agree with PP that getting station info beforehand can be good, such as internal layout, location of toilets etc. Most of this should be available online.

If you don't fancy headphones, foam earplugs may help as they just lessen noise rather than block it (don't want to miss important announcements). Also guard against fatigue as much as possible, again easier said than done, as that should reduce the chance of getting "stuck" in the moment and unable, literally or figuratively, to move onwards.

You may find some other MN threads useful too, even though they're not related to autism specifically. I'm thinking of ones by women anxious about travelling alone or about any travel at all. There have been quite a few.

Lastly, Aldi (at least my local one) doesn't have music either. It's only when I occasionally pop into other supermarkets that I remember how awful it is to be subjected to that while shopping.

Good luck!

Thank you again Treesatsea!

That’s interesting you saying about being able to cope in a crash or a real emergency! When there is an accident I am the calmest person in the room strangely! My neighbour cut in to himself with a chainsaw last year and arrived at my house with blood dripping down his arm and I dealt with it quickly and efficiently and then drove him to the ER. He still talks about how calm I was in a crisis! Little does he know as he hasn’t seen me on a train or a plane 😀😀. Nor can he see inside my fretting anxious head!

Thank you for further tips. I will study the Eurostar website and other Mumsnet threads and I’ll try foam ear plugs although have difficulty equalising pressure in my ears when we go down in to the tunnel usually. I will also try and sleep the night before but sometimes that’s a tall order as you can imagine! 😃.

Thank you also Floorwipes again it is very good to know I am not alone though I am sorry you find some forms of travelling difficult too. It’s so exhausting isn’t it and very few people understand. I am particularly glad I am not the only one who finds transitions difficult as my dh finds that particularly different to comprehend as he assumed I would enjoy a break in the circumstances! 😃.

Thank you for your tips and hints about detailed planning. I am definitely going to follow your good advice!

I was thinking about the whole transition thing again, after posting earlier. It really is an unusual experience. When I've tried to explain it to people, they think I'm just referring to worrying about missing a transport connection, which is something very different.

For me it's as if I'm stuck in treacle and worry that I won't be able to stand up and get off the train etc, whereas you'd think I'd be glad to have arrived safely and be eager to get up and leave. And it's nothing to do with not wanting to leave a comfy, warm seat. Just an odd experience all round.

As your daughter is undergoing assessment, I expect you know a lot about autism. Did you know a lot has been written about "autism transition difficulties"? For me it echoes the difficulty of starting/changing tasks that people with inattentive ADHD have.

I don’t really know a lot about autism as it was my dd’s psychologist who she was seeing for anxiety who suggested she may be autistic and this is all very new to us tbh. But I can definitely relate to the “stuck in treacle” feeling during transitions so I will do some research on transitions in general for those with autism.

For me it’s like my legs are very heavy and my feet are stuck on the floor. It’s a very physical feeling and I can’t work out what causes it either. Obviously fear of some sort!

I think might be something to do with not being able to relax during the journey at all so I am in a heightened state of anxiety all the way, so when it comes to changing trains or whatever, it’s another step up in anxiety ifyswim.

In a crisis, I either deal like a pro at the time and meltdown later after the danger has gone, or else freeze. I think it depends on whether I can see a way out in the first split-second.

I've started having lots of problems travelling. I used to like travelling by train but it got more and more unpredictable over the years. For the last few years I haven't even been able to say with confidence that I shall be travelling on the day I want - lockdowns at first and now strikes. It causes me so much fear and sickness and I find it hard to cope.

(I also get bad carsickness - my record for entering a car to getting the driver to stop so I could be sick is about 20 minutes)

One thing I want to mention though that helps me if I am going somewhere new is that I use that little orange person on Google Maps and drop him on the route and go for a walk - from the comfort of my own chair. Once I am a bit more familiar with the roads, I feel a bit more in control.

@Physalisosewater77 Yes, the transition problem must be just another aspect of the anxiety. For me it's probably knowing that, after a slight relaxation during the current stage of the journey, whether it is an actual travelling stage or just something like buying a ticket, the anxiety of having to embark on the next part then kicks in. Heavens, why can't these things just feel easier...

Hi OP I have a si.milar story to you.
Cinemas and eating out have been too much for decades for me.
Holidays more stressful than relaxing and I was diagnosed with General anxiety and agoraphobia which is wanting to be in my safe place...home.
I feel I may have ADHD and autism.My issues are sensory overload.
Regarding the travel sickness I would get meds and do some mental health therapy which I self referred for locally.
CBT and breathing exercise has helped me.
Good luck with it all.

Thanks for the latest replies and for the strategies and tips which are very helpful.

I will look for the orange man on Google maps 😃 and ask my doctor for some temporary anxiety meds for this trip to tide me over before starting long term therapy such as CBT and breathing exercises.

I don’t know why these things can’t be easier Treesatsea those are my thoughts exactly.

Train strikes and travel sickness definitely add to the stress staticgirl

Sorry this was a lot to try and read and I struggle so I am going to answer the question but sorry if it no right info for you

i am diagnosed autism and dyspraxia and I cannot go anywhere new by my own very easily at all

I travel the same way to the same places every single day today I am going somewhere “new” and a friend is taking me cos although I can get to the location I got no idea where I am going in the building etc

I try to walk home from town a different way yesterday and and what is normally about a 1 hr walk I got totally lost and eventually gets home after 2.5 hours after eventually finding somewhere where I know where I was. The only way I manage to find my way is cos I was outside and I am much better generally outside in nature

I get extremely disoriented when I am somewhere “different” and cannot find my way without support I never realised how bad it was until people encouraged me to apply for pip and had to have helps with that and I got awarded 10 points for mobility cos I just cannot get my own self to places outside my routine it can be quite scary for me cos I just live by my own

Money was cut for diagnosis and treatment of Autistic adults in my area of Scotland just as I started the diagnostic pathway, so I remain undiagnosed in my very late 50s... I have known for many years that I am on the spectrum.

I used to love to travel on my own and then with my children a lot, especially by train, and then by car, usually as mapreader, and have completed several house moves across the country, but as I have got older, I've found it harder and more stressful and tiring.

I did plan meticulously beforehand any long journeys so I could identify stressors where I might start to get overwhelmed.

I use my earplugs in the supermarket or shopping when possible (I use Loops quiet ones) as this helps me to alleviate panicky feelings and focus; I used to use a Walkman and play something that was soothing, maybe I should do this again! 😁

I’m really sorry that you struggle with direction and orientation and going to new places too PinkBuffalo it is very unsettling.

Thank you for the Loops recommendation LilyRed I’m sorry to hear about assessment budgetary cuts which are so unfair. I used to be able to travel by myself a lot more when I was younger too. It was never easy but I had more energy with which to fight the fear then. Meticulous planning is obviously the way to go!

I know this thread has gone a bit quiet now, but I popped on to express sympathy with the poor directional sense/spatial issues. I am absolutely place blind, though can sort of follow my nose if somewhere is familiar. I muddle up landmarks and get lost all the time. I don’t struggle with travel but then I don’t get vestibular problems (which it seems you do). Supermarkets are just about ok, though the chilled cabinet aisles cause me bother because I’m super sensitive to the cold!

I travel on my own and here are the things I do to mitigate my issues.

• I struggle with sensory issues so I wear a particular soft wrap that I can put onto any seat or over myself to mitigate the scratchiness / risk of stickiness. I carry baby wipes so I can remove sticky from surfaces and a dog poo bag to hold used wipes. I carry a heavily perfumed scarf that I can bring up to my nose to cover smells I can't cope with. I have noise cancelling headphones to reduce volume. I take my own drink / snack.
• I don't have great sense of direct so I do my homework before hand in the form of collecting routes, spare route info., photos of maps in my phone etc..
• I have no issues in asking for assistance which helps but I have a plan clearly written out showing where I am going and how as sometimes my mouth gets confused and it helps to show someone what I am asking about.

I am sure you can do this if you make some preparations for what you need to be comfortable!

These are excellent strategies- thank you so much SpringleDingle I like the idea of bringing your preferred sensory environment with you!