Letter from the North

Away day and more masking – 09-Feb-2019

Thank you Rosie – one of a set of three lovely earrings for my Birthday back in January

Sat 09-Feb-2019

I have no idea what happened today! Clearly, I made no notes, we would have packed for tomorrow, but beyond that it was research for the next assignment.

Sun 10-Feb-2019

Up to Sheffield for my autism MA “away day” on Monday. Up at 5:30am, left at 7am. Stops for loo and drinks at Cornwall Services, Exeter and Gloucester where Teresa stocked up on all sorts of goodies. We arrived at the hotel outside Chesterfield 5pm ‘ish. It wasn’t a great hotel, I was fine but Teresa – well it was just too shabby (not chic enough!)

We ate Ok in the bar and by 9pm I was crashed out, an Ok night’s sleep but the dreaded diarrhoea still struck at some point during the night.

Mon 11-Feb-2019

Left 7:30am in the morning (no breakfast) and with some wandering around trying to find the building where the car park is in a warren of streets, half of which are no entry and/or one way. We managed, got the buggy out, the building the day was in was next door so not a challenge to find!

The Away Day Experience

Not the most flattering picture of me having breakfast!

Breakfast in the students lounge area for both of us and then off went Teresa shopping and off I went in the lift to the class room.

I wrote some notes on my experience for our cohorts private FB group, but they don’t seem to be a group who likes to discuss autism, not even really the study process, so I thought I’d move it here and change any names for privacy. So, if it reads a tad odd, it wasn’t intended to be part of this blog.

This is a course on autism, and I think most of the people on the course are not autistic. I thought this would be appropriate to share with the course, but I suspect it would feel like a “passive aggressive” criticism, so it’s here as just my opinion of my experience. There will be some repetition from what you’ve seen me write before, well, repetition is good and some people from the course may read this and not have read me before (really, there are people who don’t hang on my every word, I can’t believe it 🙂 )

So, to get started, whilst there is a posh term for it, in simple terms, I have no facial recognition at all (actually I have minimal visual memory of anything, that really means at all, I can see your face 100 times and it will still not be familiar – ask my wife!

I do recognise body language which is how I recognise Teresa (my wife), my children, …, I am sufficiently familiar with them that it is easy to do. Nevertheless, I have been on a training course with Teresa who was sitting on the other side of the room, nice and still and calm, no active body language and I had to think twice as to whether I knew the person because Teresa has the same sort of wild hair and glasses!

I also don’t remember names without a lot of effort, no matter how many times I hear them repeated.

So, how did I cope?

I was in a room full of strangers who I didn’t recognise from sharing the same room with for three days on our course in London. I didn’t recognise any of them outside of the room or if they moved from where they were sitting in the room. I had no idea who they were or what they were called.

I felt VERY alone. One person had arranged to sit next to me, which was wonderful and because they then came and sat next to me, I was pretty sure they were the person who I had been talking (via messenger) to.

One other person came over and introduced themselves with their name, thank you Fred (not their real name!). I think the same person unlocked the disabled loo for me downstairs in the café area, but it could have been a total stranger, so I am sorry if I knew them and/or it was you Fred, …

It is very hard to connect to people when you cannot remember who they are if there is the slightest break in the conversation. So, a classroom where communication is intermittent is impossible. I cannot remember who I’ve spoken to or about what. It is paralysing. I tend to focus on those I’m pretty sure I know and ignore everyone else because it’s just too difficult.

Do I want it to be like that, no, I don’t, I want to get to know my fellow students, but they feel distant and unapproachable. Maybe some of them are, maybe all of them are, I have no way to know. Maybe they think I am unapproachable, that’s why I am writing this blog to try and explain.

Have you heard of masking, shy people do it to try to cover up their shyness, autistics do it 24*7 unless we are in a familiar space with people we trust to be ourselves with. The self-confidence you may see in me is me making a superhuman effort to try to communicate in a socially acceptable way – that is incredibly exhausting.

It’s not just in that group, it happens to me in ALL situations where I am not with people who know me REALLY well.

However, I find it interesting and worrying that in a room full of people who want to know more about autism, many of whom work with autistics, that as an autistic I felt completely isolated by the “experts” around me and, as far as I can tell they neither realised not wanted to do anything about it.

Maybe it’s my fault for being a fellow student believing I am equal but different; and not a patient, pupil, patient, …,

Ok, back to normal Bean blogging

We finished around 3pm and by 3:30pm we had loaded up the buggy and on our way. We drove straight to Gloucester services (stopping briefly for fuel only on the M1) I probably should have stopped sooner that Gloucester, but 2.5hrs was not unreasonable (same as on way up). However, this time I wasn’t very well hydrated and this just dehydrated me more.

Got to Gloucester around 6pm and did loo, ate a pie and drank a cup of tea (not the biggest) and I stood to rest my tired bottom.

I wasn’t sure if I’d sleep there or not but decided to push on, optimistic I could get us home!

After passing Taunton Dean I started to feel I was probably tied underneath feeling fine (classic hyper which I notice I do when I get over tired) and decided to sleep at Exeter Services, not just stop for a loo and drink break. Boom, my body agreed and I was suddenly very tired.

We got to Exeter around 9:30pm, quick loo then duvets out and slept. Me better than Teresa. Around 1:30am I work up too cold (lots of mini wake ups before of course), so, loo, cup of tea and we got moving. I drank the tea about 15 mins later when it had cooled down (in a lay by of course!)

We got home around 5am, quick drink of water, duvets out of car and crash.

Tue 12-Feb-2019

I woke around 9am and got moving, Teresa was a while longer 🙂 , but she had slept badly at the services (but better in the car after we left Exeter!)

Diarrhoea in buckets, nausea too, as for the fatigue … the price to be paid for such a mad exercise.

Biggest problem was that I had been too careful about drinking so I would not need the loo while sleeping and then on the last 3.5hr stretch to home (Cornwall Services closes at 11pm). Bad move, I was dehydrated and I think that hasn’t helped me. It’s also a stupid thing to do when have damaged kidneys!

Wed 013-Feb-2019

Diarrhoea and nausea and fatigue continue but much easier than yesterday

Fighting Windows 10 fighting Windows 7 on the same computer.

Thu 014-Feb-2019

Still fighting Windows 10 fighting Windows 7, but winning by separating them so they never see other!

No poo, then severe diarrhoea and needing Loperamide again.

Fri 15-Feb-2019

Head down and getting on with work. No poo all day, diarrhoea as I went to bed, however avoided the loperamide.

Postscript

When I was a very awkward (autistic) student at (Sheffield) University 45 years ago, I still remember mixing with the students from my classes, not all of them, but enough that even for me it was sociable.

Spin forward to today and everyone seems, to me at least, more wrapped up in themselves. Is that a function of getting older (but some of them are much younger than me) or is it just a sign of the times. I wish I understood. The people at work are friendly, we chat, often “small talk”, but we do talk and where relevant about work.

So, why am I finding it so difficult with this lot. Is it them or can I expect it with all the students studying for the MA.

If a were a true (stereotypical) autistic I would love having no contact, stick to my own world and be glad no one wants to be social with me. I am autistic but it takes all sorts and I do want to be social, but they seem to gather into little cliques and those groups are impossible for someone like me to get past. I would guess it is the same problem for the shy folks there too?

I found the same on the counselling and other adult courses I have been on, so maybe it is something about mature students. Still, if I wanted to understand autism better, I would want to talk to #actuallyautistic people whenever I can (and I do), I guess that’s just me.

Postscript 2

CT scan on Tuesday and scanxiety starts, a 2 week wait for results, it’s going to be tough!

The Bean, Pendeen, 17-Feb-2019

1 Comment

  • Kate Mole

    Hang in there Bean, and good luck with the scan.

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