Everyday challenges: other people (part 2)

It hasn’t been a good evening.

I am always exhausted after a day at work. All I want to do is get home and relax. I am normally so overwhelmed that even the thought of having to engage with someone I don’t know can tip me over the edge into near-meltdown.

And normally that’s fine.

But today, someone was parked in my parking space (the space actually belongs to me, it’s not just one I like to use). And I didn’t know what to do. There were no visitor spaces available, and nowhere else to park. I had no script. Luckily, one of my neighbours was coming in and I checked that they were OK with me blocking them in, but I still couldn’t cope with the situation. I couldn’t cope with not knowing when I might have to go and move my car, with not knowing when the entry phone was going to ring.

I was shaking when I got up to the flat after leaving my car. I knew a full-blown meltdown was on the way, and had to do something. So I scribbled a note, went back downstairs to leave the note on the car but couldn’t go back up to the flat. I ended up screaming in the car park to try and get someone’s attention. That worked, but the person who had parked there wasn’t happy. He kept trying to justify himself, but I couldn’t engage with him in a positive way. (And, unfortunately, when I am that close to a full-blown meltdown, my language gets, um, interesting and I am not in control of what I am saying.) He kept talking, saying it was “only a parking space”. That was like a red rag to a bull.

I don’t really know what I could have done differently. I couldn’t cope with the fact someone was in my space. I couldn’t cope with the uncertainty of not knowing when I would get my space back.

But it was not a good time for me to have to talk to people. I couldn’t deal with conversation, especially with someone who had broken the rules. Under normal circumstances, I would have just retreated. Tonight, that wasn’t an option – I was blocking people and spaces in, so would have had to move my car at some point, and I know I would have just become increasingly wound up to the extent where I may not have physically been able to drive. So I needed to get the car moved, but to do that I had to have a conversation I was not really in a position to have.

And, yes, a full meltdown happened afterwards, when I was back in my flat.

I am so angry that other people’s actions can have this much impact on me. I don’t understand why people can’t just stick to the rules. I don’t know why the man today had to take over my space, and I don’t know what to do if it happens again. (I can’t even find a new script with an alternative temporary parking space if mine is taken, because there is literally nowhere else to park when the visitor spaces are full.) I don’t understand why people have so little consideration for others; why they assume that what they want should have priority.

After the meltdown, I tried to reach out to someone I thought could help, but I think I got it wrong and now I’m scared that they’re angry with me.

I wish people came with an instruction manual…


Autism and comedy: target of ridicule or fair game?

I had a free day yesterday, so decided to go into London and try to see The Book of Mormon.

It was an interesting day, and an interesting experience. I’d seen the show a few years ago, and thought that I’d go and try for the ticket lottery (£20 for front row tickets!). Of course, I had a plan B if I didn’t get tickets through the lottery… one thing I have come to terms with is my need to plan for uncertainty; to contain as much uncertainty as possible within defined boundaries. So I knew that I was definitely going to see something at the theatre, I just didn’t know what.

But the lottery worked out, as I suspected it might on an off-peak Wednesday afternoon.

The show was great, I really enjoyed it – although if you’re religious or offended by swearing, you should probably go and see something else. But the experience was not without its challenges (including the heat – the Trafalgar Square fountains looked very inviting…)

Even getting the tickets threw up a challenge when the box office asked for my phone number. I don’t use the phone, never answer it if I’m not expecting a call, and don’t like giving out my number when I don’t know how it’s going to be used. I was trying to explain that, but they insisted on having a phone number before they would sell me a ticket “for security purposes”. Which is… fine, I guess, I don’t have issues with security, but it made me anxious that someone was going to call me; that I was going to have to deal with something that I’m not competent to deal with. Not sure what they’d have done if I didn’t have a phone number – probably not sold me the tickets (I wonder how that fits with the theatre’s accessibility policy?).

And the show itself affected me in ways I didn’t expect.

The last time I saw it was shortly after it opened in London, so well before my diagnosis. I hadn’t realised how difficult I would find watching some of the early numbers.

Because here’s the thing. There are standard comedy tropes that overlap uncomfortably with common characteristics of people on the autism spectrum. The outsider; the socially incompetent ‘weirdo’; the individual obsessed with minutiae.

The issue seems to be where “geeky” and “autistic” traits overlap – and of course not all people with geeky interests are autistic, and not all autistic people have geeky interests. But – as per the Venn diagram below – much of the comedy material seems to be in this area of overlap, where behaviours could be explained as either a manifestation of geekiness or an indication of autism.

venn diagram

And this was the case for the start of the musical as well. The butt of the jokes was a socially-awkward man who didn’t fit in with other people, didn’t understand social conventions, seemed obsessed with rules and had an intense interest in science fiction. Which all felt uncomfortably familiar (my special interest isn’t science fiction, but I know that particular obsession is not uncommon in our community).

I am sure that the intention of comedy is not (generally) to mock people with autism. But still… autistic traits are made fun of by non-autistic people in ways that would be completely unacceptable in relation to other disabilities.

So that was all a bit uncomfortable at first (and, yes, I do see the irony in being slightly offended at a show that sets out to offend in a completely different way).

But then one song made me cry. It’s not about autism at all, but seems to articulate the expectations placed on people with autism by the neurotypical world. Or perhaps that’s just what I’m getting from it at the moment: I am stressed and tired and was hoping that this was going to be more of an escape from reality than it actually was.

Maybe my ‘helpful’ obsession (i.e. not murder mysteries) isn’t so helpful after all…

Everyday challenges: other people

Every year I tell myself that I will use my annual leave from work at regular intervals throughout the year. Unless I’ve booked a ‘big’ holiday, every year I get to about May and realise I actually haven’t booked much / any time off. So I’m taking a week’s leave at the moment.

I hadn’t realised when I booked it that this was going to be quite this hot. I don’t handle the heat (or cold) well, and there aren’t that many places with air conditioning or proper shade. I’ve been to many countries that are far hotter than the UK and been absolutely fine – but the infrastructure is set up for heat, which it isn’t here.

In the heat, my tolerance for things that I find difficult, overwhelming or stressful is greatly reduced. Which isn’t great when I’m trying to have an enjoyable day out.

I never quite know how to describe how I interact with other people. Over the years, I’ve developed a good sense of what the appropriate social rules are in different situations. When I am able to follow those rules, interaction with other people is easy and – in most cases – enjoyable. I find new situations can be stressful, until I work out what the rules are, but that happens less frequently; my mental database in respect of appropriate social rules has become quite extensive.

But of course, I can’t control other people.

And when other people don’t abide by the appropriate social rules, I don’t know how to respond and I don’t know what to do.

That happened a bit today.

I was spending the day at Hever Castle, which is somewhere I’ve been meaning to go to for a while. I’d done my research: I know it tends to be busy weekends and school holidays, so I’d deliberately avoided those times, as I know I don’t cope well with crowds.

It almost worked. Except there were quite a few school trips there today. And one school, in particular, made the visit less enjoyable for me.

They were young children, 5 or 6 years old. I accept that young, excited children can get a bit noisy. That’s fine, and that’s one of the reasons why I always have headphones with me. But there was one child, when I was queuing to get it, that just kept screaming. The headphones didn’t block the screaming out, even with my music turned up as loudly as possible. That would have been bad enough – screaming is one of the noises I find difficult to tolerate from a sensory perspective – but the social rules also broke down. My expectation was that one of the adults would try and manage the situation more; to ask the child to stop screaming; to try and remove the child from the main group of people until they had calmed down. None of that happened. The adults seemed oblivious.

I almost couldn’t buy the ticket because I was so overwhelmed. And as soon as I got in, I had to find a quiet spot to desensitise – not exactly the start I wanted to the day.

That has all happened before – people have generally got louder and more oblivious to their auditory impact on others – and at least I have strategies to deal with that.

What happened later in the day was not so good.

I was waiting to go into the castle itself, and some children from the same school trip were in the courtyard. One of them picked up a piece of gravel / small stone and, looking directly at me, threw the stone at me, hitting my arm and causing a slight cut (luckily I carry plasters; I tend to faint at the sight of blood). I said to the accompanying adult that I didn’t appreciate a stone being thrown at me, and he just said that it was only a small stone(!). Again, no attempt was made to tell the child not to throw things, or to remove the child from the situation. And no apology was given for the child’s behaviour.

It was only a small cut – but I process these things differently, so it hurt! It also forced me into engaging with other people, when I didn’t really want to – and then instead of the expected apology, I was effectively told not to make a fuss. That’s not in my social rules database!

It was one school, and perhaps the teachers / helpers are particularly oblivious or entitled (I fully appreciate that children that age may not be fully in control of what they do – which is why I would have expected the adults to intervene, as they would have done when I was that age.). But this seems to be happening more and more often. So I don’t know whether I need to recalibrate my social rules (do I really just need to accept a strange person throwing something at me?), or whether I just need to avoid people, or whether I need to find an adults-only venue (and if anyone knows one, please let me know – everything around here seems to pride themselves on being family-friendly), or whether there’s another solution entirely.

I know that sometimes my own behaviour has an impact on others. I try to minimise that where possible, and I do what I can to manage my condition; to mitigate its impact on other people. I just wish other people would show me the same consideration.

How do you damp-proof a life?

I need to get back into the habit of writing again. I’m just not sure what to write.

I am struggling at the moment.

This year has been very difficult. Just under a year ago, my father was diagnosed with cancer. As soon as that happened, everything I’d been dealing with in my own life had to be put on hold. The analogy I’ve been using is that you don’t address the damp problem in your house when the roof blows off.

Although I’ve been shielded from much of it – there is a physical reason why I can’t be of much practical help during illness – watching him go through the treatment has been painful. My family all knowing that the odds of survival with the type of cancer he had are around 40% for the first year, but none of us actually saying that out loud. Articles in the media, blogs from people with the same type of cancer who didn’t make it, despite being decades younger. Horror stories of what his life would be like after cancer treatment, after an operation which is harder on the body than open heart surgery.

We never talked about any of that. We still don’t.

And at the time of writing, we have cause for hope. The operation – at Christmas – was a success. The chemotherapy has finished for good. There are no signs of the cancer. The doctors talk of him being ‘cured’, although I suspect it’s technically still ‘in remission’. His hair is starting to grow back, and although he’s still not up to full fitness, he’s getting there. My parents have even booked a holiday.

I don’t want anything I’m writing now to take away from that. And I am so grateful that he was able to have the treatment he needed; so grateful that he is still here for a while longer.

But – once the roof of the house has been fixed, you remember about the damp problem. And during the time you were getting the roof fixed, the damp has spread.

And I’m back where I was a year ago, only worse. Because what this year has also taught me is that I have very little support in my own life.

I can count on the fingers of one hand the number of people who have asked if I was OK; if I was coping (I wasn’t).

I haven’t had the energy to keep up with people I knew before I moved here, and none of them have bothered to contact me. That’s not unexpected, but it still hurts. It hurts to realise that, once again, I have misjudged the extent of a friendship. It hurts that some people I thought would care don’t; to understand that I am not as important to them as they are to me.

I don’t make friends easily. I don’t really know how. Even if I did, I’m at the wrong age; the wrong stage of life.

I am still alone most of the time. Still isolated.

I know myself better than I did two years ago. Some would say that’s a good thing. I’m not sure. When I was pretending – when I was adopting a different persona – I didn’t mind too much if people didn’t like the persona, as it wasn’t really me. I was happy not to be around people, as keeping the persona up was tiring.

Now I don’t have that mask, I am just myself, it’s much more difficult. I care more what people think. It cuts more deeply when I am rejected. I want and need to be around people. But I am more alone than I have ever been.

My father has a renewed chance at life. I am happy for him.

But I can’t help thinking that the burden he bore should have been mine. He has people who care about him; I do not. He has fought for his life; I have tried to take mine on several occasions.

In his position, my choice would have been very different.

You can’t have a house without a roof. But damp, left untreated, can also damage the house beyond economic repair.

So how, exactly, do you damp-proof a life? I wish I knew…