I don’t often bother talking to people about my sensory issues and my intolerance for daily living,
After all, everybody at some point feels too hot, or too cold. Everybody feels pain. Most people have a food they don’t like, or a smell, or a texture. And most people at one point have been failed by their senses and wished that they were more or less sensitive. But what nobody can really ever know, is how someone else experiences their environment, how someone else responds to and is affected by exactly the same stimulus.
Sometimes I need to explain, but I bite my tongue and proceed with caution. I’ve learned the hard way that some people will just hear ‘flaky’, or ‘overreacting’, or ‘awkward’, despite my best efforts to describe things.
Ok, so nobody likes it when the train is late. And nobody likes being shoved into the armpit of another passenger. Well imagine if disruption to your expected routine would ruin your whole day, and possibly your week? Or if having to talk to strangers (or the possibility of having to talk to strangers, or even being in the same space as strangers) made you so stressed you might not accomplish anything else that day?
I really do want to see you, but I really can’t take the train, not today.
© Catastraspie, 2014.
You see Thomas…
catastraspie 
I am rather used to trains by now – but also, most of my friends never mind a phone call “Sorry, this train was too full, I got nauseous thinking of getting on it, will be late”. Or I plan for the trains that won’t be full – Ian is a genius when it comes to that, knowing which trains will likely be full and in which we’ll have space, so we can plan accordingly.
I had to take way to full a train yesterday, however, and I get nauseous when I sit backwards.
I have acupressure-bracelets that help, but I had forgotten them.
So I had to change seats, and the only available seats were across from a lovely old Gentleman, who, however, questioned why I had not stayed in the other seat.
He had never heard of this kind of motion sickness, and asked some interested questions, and any other day I would have been delighted to answer, but this time it just felt like he kept questioning the validity of me changing seats.
Back to the topic at hand – “Why can’t you just?” … is a question I hate with a passion, as well. Especially because it’s usually like this depression-metaphor:
You are trying to peel a potato with another potato, which doesn’t work and is frustrating, and then someone says “Why don’t you just use a peeler?” … and hands you another potato.
Thanks for your comment! I’m glad you have good friends, it makes such a difference when people understand. Mostly my friends do too, it’s just one or two who think they are helping by encouraging me to do things I’ve said I can’t manage at that time. I use accupressure bands (Sea bands I think) and find them useful for cars, I don’t have motion sickness on trains luckily or I would never go on them at all. I love your potato analogy – very visual! 🙂
Miss Catastraspie, you do write beautifully. 🙂
🙂 xx
I’m married to an aspie who just found out he had it. He ran away from home he has been gone 2 days we both read allot about it and now he seems very upset. All I need to know is what is expected of me for him to function. All the negative things said on the internet is not the answer.
Hi, thanks for your comment. Sorry to hear that you and your husband are having a hard time, it sounds like the diagnosis has been a bit of a shock for you both. Ideally the person who provided the diagnosis should also give follow-up support and signposting, but this is sadly not the norm for adults. The internet is a mised blessing – it can contain too much information, scary information, but it can also be a good resource and a way of linking in with support and people who understand. I don’t know where you are based, but in the UK the National Autistic Society (http://www.autism.co.uk) provides accurate info and support from people who understand. Your husband will be the best source of info regarding his experience and difficulties, although like many adults with AS he may need help identifying what would make a positive difference. It will take time to process and adjust to this new identity, for both of you. There are some good support groups on Facebook, for adults with AS, and partners of adults with AS. I suggest you joim different groups so that you can both be honest! There also a lot of blogs written by adults who have Asperger’s/Autism, and in my opinion these are often more positive or helpful than some of the stuff written by neurotypical professionals, or even by partners, parents and carers. I wish you both all the best.