7 hours and 400 miles of Hell.

Ok, perhaps not hell but it certainly will not be fun. On Friday I’m off up to Scotland to see my parents. I don’t drive so taking the train (or at least trains plural), a cross London multi-hop stage, then a long stage from Euston to Carlisle before the last train to Dumfries (the biggest town/train station to my parents) after than it’s a good hour and a half by bus home.

My idea of ..well.. I’ve already said it.. Hell !

Don’t get me wrong, I’m looking forward to seeing my parents but I’m dreading the journey. It’s Monday now and my journey doesn’t start until early Friday morning but already I’m fretting. There’s rail construction going on which is causing disruption. It “shouldn’t” affect me but I’m already worrying that it will. I panic constantly about being late. I’m not as bad as I was before I moved to London/got married but I would set off an hour early… then add an hour more for safe measures… then take the train/bus etc BEFORE the one I calculated I’d need to get just on the OFF CHANCE I missed it. So the end result I’d usually be at least 2hrs early for everything.

My wife on the other hand, ambles through life and is usually late which sets me off on one of my “fun” meltdowns. Just as she’s have a positive effect on me, I’ve had one on her and now I’ll leave later than I feel is adequate and she’ll leave earlier than she feels adequate and now we arrive slightly early/on time which is a blessing.

However, back to Friday. So I’m checking the tickets in my wallet every hour or so. Like they’re just suddenly going to jump out and wander off by themselves? But I have to keep checking they’re in there. Of course, a sensible idea would be to leave them in an envelope at home, but then I’d worry about them when I’m at work. What if they’re moved? What if I can’t find them on Friday before I need to depart?

I’ve got my headphones and reading materials. And a phone charger, and a battery pack, and another battery pack just in case the battery pack and charger don’t work. (I have a drawer in my desk with AT LEAST 10 or 11 battery packs I’ve bought over the years)  “if My phone dies I’ll have no music, I’ll have to listen to all the voices on the train, I’ll have a meltdown…” (this is my thought process btw) .. “best take a third battery pack just in case!”

Ok I’m going for the weekend. Off on Friday and back following Monday. I’d best pack a weeks worth of clothes. Well you never know what might happen! But I don’t know what I’ll be doing!! ok so I’d best pack jeans AND a pair of smart trousers, oh and a couple of smarter shirts, and a jumper. Is it going to be hot or cold? Best pack another jumper and a few light summer shirts. Wet or dry? Best pack my waterproof AND my light summer jacket.

Oh dear! My rucksack is getting full and heavy now. Should I take a suitcase instead? but if I take a suitcase I’ll need to stow it in the racks away from my seat. I’ll need to keep watching it to ensure it’s still there. And if I take a suitcase how will I access my chargers etc? I’d best take a suitcase AND my rucksack for stuff I need with me.

Oh dear! how am I going to get across London carrying all this? It’s going to take me longer than I planned… I’d best plan to leave a bit earlier on Friday.

This is me fretting about everything that could go wrong about the journey. Lets not forget about the parental visit itself. No safe quiet space for me. None of my own belongings around me, parents constantly wanting to chat (they don’t yet know about my DX. I’ve never found the right moment to tell them) so it’s going to be emotional overload all weekend.

And then, of course, Next Monday.. I have to do the journey in reverse. Getting back to my London home late Monday night nice and refreshed for work the next morning.. erm?

Aspie without a Spoon!

I only realised that I was on the spectrum late last year but I have friends who have had various debilitating conditions both mental and physical and, as such, was introduced to the “Spoon Theory”. Gradually phrases entered my lexicon “out of spoons” “Me and my fellow spoonies” etc and I never really questioned it. I never really understood it either but it wasn’t for me to question someone else’s world view.

Then I got diagnosed autistic. Ok, no biggie. I’m still me! I’ve not changed overnight! I’m still the same old weird nerdy guy with his encyclopaedic knowledge of movies, an interest in word play and a penchant for math puzzles and Rubik cubes. I hadn’t been swapped for a shape shifting replicant from the planet Autismia! However, suddenly friends and colleagues who knew suddenly kept “giving me spoons” (not LITERALLY you understand) I’d have a bad day and a friend would say to me “Aw you out of spoons?” .. I’d have a meltdown and I’d be offered a break to “Regather my spoons” Spoons, spoons, spoons – they followed me everywhere.

Now, don’t get me wrong, I’m not “dissing” spoon theory. I understand where it comes from. From Wikipedia

The spoon theory is a disability metaphor used to explain the reduced amount of energy available for activities of daily living and productive tasks that may result from disability or chronic illness. Spoons are a tangible unit of measurement used to track how much energy a person has throughout a given day.

Ok. I get that! It’s an arbitrary unit of measurement. Could be spoons, buttons, paper clips or bananas! I’m a mathematician. I’m used to arbitrary symbols representing numbers.

th0GONSJ36

Euler’s identity anyone?

 

But to me, spoons made no sense. As a single home owner 15 years ago I had to buy all the mod cons for my new apartment. I bought cutlery. Never once did I feel depressed or worn down because all my knives, forks or spoons were in the dishwasher! If I ran out of spoons I washed some up.

I couldn’t get my head around the spoon analogy.

Then, a couple of days ago someone mentioned on twitter that they couldn’t get the spoons thing either. To them it was Jenga blocks. You have a tall stable tower of Jenga blocks. Everything takes a block away. Dentist visit? Remove a block! Meeting at work? Remove a block! Problem with the plumbing? Remove 3 blocks!! Over the course of a day the tower gets more and more precarious, full of holes and unstable. Eventually you have something that removes that last crucial block. It might be something mundane, like the sandwich shop running out of Tuna and sweetcorn mayo filling. Suddenly your entire tower comes crashing down.

Capture

Link to the original tweet that inspired this post.

I’ve never crashed into a heap over running out of spoons, but a tower of bricks falling into a chaotic heap because of a small thing happening is a much more appropriate analogy for me.

By all means, keep your spoons, forks, paper clips, pencils, umbrellas, coins, batteries, unicorn dust or Midi-chlorians. Whatever works for you! It’s all good.

For me, I’m all about the Jenga!

Now if you excuse me, I’ve got a tower to rebuild.

Jenga_distorted

 

Of Meltdowns and Men

(My apologies to John Steinbeck)

Well, what can I say? I’m an aspie and I have pronounced aspie traits. I’m 47 years old and tend not to throw tantrums these days when things get a bit out of hand, however that doesn’t mean I’m 100% immune from the looming spectre of the dreaded aspie meltdown.

At the weekend my wife and I drove from London to the Guilford area for a friend’s 50th birthday bash. Although I was hesitant and somewhat dubious about going to a party I decided to attend because (a) I like the friend in question (one of my Wife’s oldest friends I’ve ‘adopted’) and (b) I thought I could handle it.. After all how bad could it be?

Oh dear!

We arrived at the venue and it was quite small with benches round the outside and a couple of tables with buffet foods laid out. They were playing 80’s pop hits on the sound system and it was all very cosy and friendly – initially! Not everyone had arrived yet and we were some of the first people to turn up. More and more people started to arrive and floor space began to get eaten up. I found myself being unintentionally ushered up against the wall between a bench and the buffet while people split off into groups and chatted noisily around me. My wife is off chatting to some old friends and I’m standing there, trapped with no route out.. no, that’s incorrect, I had a route out. I just needed to say “Excuse me” and move. Of course, 20/20 hindsight is a wondrous thing. No instead I stood there feeling increasingly more and more anxious while being bombarded by music too loud for the size of the venue and the oppressive mix of multiple conversations battering my senses.

My wife looked over and her face dropped. I didn’t realise it at the time but according to her “post mortem” of the situation I’d started rocking and fidgeting with my fingers and cuffs. My “tell” is when I start constantly wringing my fingers over and over while keeping my arms tight up against my chest. When I’m really stressed I rock back and forth slightly, the faster I rock , the more stressed I’m getting.

I was at the brink of screaming when my wife grabbed me by the arm and guided me out to a quieter back area of the café/bar where the party was being held. But alas the damage was done. I was shaking, I became non vocal, was rocking violently and was chewing on my fingers.

People kept coming over to see if I was ok, unfortunately sitting down next to me and putting their arm around me didn’t help my feeling of being trapped. My tactile defensiveness was cranked up to 11. In the end, the proprietor of the establishment let me out the back of the bar – there was NO way I’d be able to walk through the crowd again. Luckily My wife and I were staying in a hotel across the road for the night so I had a bolt hole. I dread to think what would have happened if we were driving home or were staying miles from the party venue.

I felt awful. Not only had I ruined my night, I’d (perceived) to have ruined my wife’s night, my wife’s friend’s night and the night of her guests. As it transpires my wife informed them of my problem and they were all quite understanding.

I hate letting myself down like this. I’m 47, I feel I should be able to cope. I was supposed to be going to the MCM comic con this month but that’s a no go now. I can’t even begin to face several thousand people in a loud crammed exhibition centre.

As I get older I find myself getting increasingly isolationary. I seem to be losing the ability to cope with crowds. It’s a worrying trend and one I need to keep an eye on. Perhaps it’s not just me though? Perhaps other aspies have the same problem. Or perhaps.. going back to John Steinbeck..

“Maybe ever’body in the whole damn world is scared of each other.”

John Steinbeck, Of Mice and Men