I worry a lot about going on public transport. Sometimes I can't. Sometimes, I can. That can I/can't I thing is what causes a lot of confusion amongst non-autistic people. Some get very angry with us, in fact. "If you could take a train last week, WHY can't you take a train today? You're just lying to us for attention!" I even got followed by an angry person once, determined to prove that I really could use trains sometimes. Which is odd, because we already know I can sometimes use trains. Some people are very strange...
Pretty much 100% of autistic people will tell you that it is totally correct that sometimes we can do something, and sometimes we can't.
Let's talk about why that is, and why that is a known and standard feature of autism.
Firstly, if this is new to you, you need to read up on Spoon Theory.
http://annsautism.blogspot.com/2018/02/autism-and-spoon-theory.html may be helpful, with the link to the original author of this.
Second, let's have a look at a train journey I made this week. I had to go to Manchester for an academic course. Luckily, one where I wasn't the speaker, so I didn't have to plan for being able to speak, at all. Er, quite literally - I could have gone through all three days without saying any words and it wouldn't have mattered. I had ways round it with technology. So, I didn't have to factor that in, and could save the 'spoons' from trying to talk, if I needed to.
On the way there, I knew I had the whole day to cope with that one journey, and I had planned and planned it.
On the way back home, I knew I would be tired after the course. I had to factor in everything that could happen. So....
I'd spent a lot of time thinking about station layouts, restaurant menus and pictures of the restaurant we would use. Planning how to get home from the train. Lots and lots of preparation and text communication.
Here are the other steps I had to take. This is a personal list, and of course every autistic person will have their own best ways of coping. Find out what they are. Here we go...
Firstly, travelling most of the way with a safe, known friend. I was tired, (I had experienced an autistic shutdown earlier in the day) so this was a huge bonus to me, as the friend is jolly good at having ideas when I'm stuck.
We'd started with a taxi journey to minimise exposure to noise and traffic on the way to the station.
We got into the restaurant at the station when it was a quiet time to eat.
I'd taken painkillers to take down some of the sensory pain. [I don't mean that I recommend this, by the way - always consult a GP about what's safe to do and what is not].
I had a medium glass of red wine with the very-familiar-choice-of-meal. A glass of wine, for me, also takes down some of the sensory pain. [Note that I am not suggesting that drinking alcohol is a good strategy. Staying firmly within very safe limits for people is very important, so this is an emergency and very occasional thing for me on a long train/plane journey, not a standard thing to rely on. Never ever drink and drive. And of course some people cannot or do not drink alcohol anyway].
I knew which platform we were going from, because my phone was giving me updates on the train and timings. Technology is great!
We could see the departures list from the restaurant within the station, so could double-check that there was no change of time.
We knew which seats we were going to be sitting in, because we'd pre-booked them.
We were able to get on the train in good time.
First eek...the train seating technology was broken. My seat had someone sitting at it, and the display said my seat hadn't been booked by me.
So...we improvised. Hurrah for the autistic pair! We sat at another pair of seats, which had a table as well. Bonus.
I had a window seat, so I could see the beautiful countryside.
Second potential eek - a passenger joined us and wanted to talk. But, strangely enough, it wasn't eek. She was lovely. And, by this time, we had another glass of wine. See above for the warning re Not Drinking Too Much. At two glasses of wine, I am nicely relaxed. I stop at two. I was relaxed enough to do a bit of chatting with the lovely passenger, and of course my travel-friend. On subjects I know about. Luckily, at my age, I have practised short conversation about all sorts of subjects. And, being a person of more extravert sort (as many autistic people are), I like meeting people. Honest, I do. I just don't speak non-autistic language well enough to do it for long without confusing people (and vice versa). It's a bit like you going to a foreign country and having a go at speaking to a person who only speaks a different language. Can be great fun, but you're never quite sure whether you've accidentally insulted them...
Taking my glasses off is a good way to pretend eye contact, as well. Or, if they're still on, unfocusing my eyes so I can't actually see the eyes of the other person. Eye contact is like an electric shock, for me (and for many other autistic people).
It was a long train journey, but I knew that my partner was waiting to collect me, and was going to be on the platform when I got off the train. He was texting me regularly, so that I was reassured on that.
I had use of my smartphone and tablet, both of which connect me to online friends and information. I was able to check and recheck that the train was going the right direction, and was more or less on time. And indeed be helpful to the fellow passenger about that, which is nice. I like helping people.
I had headphones with me which I could have used to cancel out some noise.
Squished comfortably into the seat corner and window, I had lots of sensory feedback from my body on where I was. And no chance of falling over. Standing up on a train is very disorientating - lots of moving scenery and wobbly train bits and people jostling up against me, so if I'd had to stand for long, that would have been a 'can't'. On busy commuter trains, sometimes you have to stand all the way. As I have arthritis and sensory damage from chemotherapy as well, sometimes I really really can't.
Outside, glorious scenery. Fields, streams, farm animals, horses, trees, sky. Those are all favourite things to look at on journeys, for me. When we get into the cities, I look for churches and JCBs. [And why not indeed...] I learned categories of things one at a time, as a child, by getting myself books with the pictures of the different animals/items/machinery, and memorising them all. I keep that database of pictures in my mind 'up to date'.
My friend got off the train an hour before I did, but I was now in very familiar bits of the country, where I knew that if something went wrong and I had to get off the train, it was an easy drive for my partner to fetch me home. I knew I didn't have to speak when home unless I wanted to, and I had no responsibilities.
So, the train journeys there and back were successful, for me.
But...the proverbial wheels could have come off that, at any point. [Not literal wheels. Well, I hope not, anyway... ]
If the train had been cancelled. If I had to stand for long. If we'd had a loud or unpleasant person round us. If the train had squeaked, screeched and rattled all the way (which some do). If I had been feeling in any way unwell or in extra pain. Well, then I would have been plunged into an autistic shutdown. And that's not something any autistic person wants to experience.
So, sometimes, with huge forward planning, support, technology, expense and luck, I can use public transport safely and well. Hurrah!
And sometimes, autistic people really can't risk it. Which is why I advocate for autistic people to be enabled correctly for the situation they face that day.
If we say we can't, there's good reasons. Well worth learning about this, so that you can be part of enabling us to get to places.
Thank you for listening.