A “did you really just say that” moment

I had intended to write a post about an entirely different aspect of this whole thing today. But, having just finished a conversation with my mother, I really just need a rant.

So the “did you really just say that” moment was that apparently Aspergers is a good thing… BECAUSE LOTS OF FAMOUS PEOPLE HAVE IT. I normally don’t swear in writing, but what the actual fuck?

All she seems to be able to see is that I have something in common with celebrities (allegedly – because at least half the people who she mentioned have never been formally diagnosed). Never mind that I have zero interest in most famous people. Never mind that she hasn’t even asked me what it’s like living with this. She has found a way not to be ashamed and that seems to be what matters to her above all.

It’s something I’ve noticed more widely, as well, since I started – through necessity – looking at this condition. There is a subset of people who seem to think it is a ‘cool’ thing to have. My theory is it’s because there are certain traits that COULD be attributed to Aspergers that have been publicised in the media. And once something is publicised some people will either genuinely identify, or want to be part of a ‘club’. But just because someone is an introvert with somewhat geeky interests it doesn’t necessarily follow that they’re on the spectrum.

What the media doesn’t show is how hard it can be living with this condition day to day. If they showed the reality I don’t think many people would want to join this particular club. I certainly don’t want to be a member. But unfortunately, I can’t resign my membership.

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A few words about meltdowns (Part 1)

Well, probably quite a lot of words about meltdowns. Because they are one of the most horrible things about being on the autistic spectrum. And it’s been really hard for me to accept that they will happen, that I don’t have control over my own actions once it properly starts, and that there are times when I will need to ask for help.

And I had one of these horrible things today. The thing I’ve most been dreading; a full-on meltdown at work.

To be fair, it’s been on the cards all week. I have so much going on in my head at the moment that it doesn’t take much to push me over the edge a bit. There are two analogies that I tend to use about this; one is a computer with too many screens open and the other is a coffee filter with water constantly being poured through and the holes being slightly clogged. If I detect that the computer is running slowly / the filter is full, I can normally deal with it by taking myself off to a quiet place. But if I can’t get to a quiet place, or things happen too quickly for me to retreat, or something happens that is just too big then that’s when a meltdown occurs.

This one was particularly bad because I could feel as it started. At that stage, it could have been stopped but not without help. Although I wasn’t on my own when it started, the person I was with didn’t pick up on what would be helpful and as I was pretty much non-verbal by then, I couldn’t tell them.

All meltdowns feel slightly different, but there are similarities. They start with a rising sense of panic and an almost irresistible urge to run; to get away. This is where I become non-verbal, normally for the duration. The image in my mind when I think about this is a rollercoaster, and at this stage it’s the slow climb up to the top. At this stage, it is possible to stop the meltdown if I have help. Otherwise, there is one last moment of clarity – the rollercoaster stopping at the top of the climb – when I realise what is going to happen but can do nothing to stop it.

Then the rollercoaster starts and all I feel is fear, panic, uncertainty. And I never remember much of what happens. I know I sometimes scream and invariably cry hysterically. I know I often manage to hurt myself – in fact, I still have scratches on my arms from today. (I never mean to hurt myself, and am not even aware at the time that I am doing so. I’m just trying to get off the rollercoaster.) This is where I need someone with me, if possible, almost to act as a safety harness for the ride. I manage at home, if there’s time, by wrapping myself tightly in about 5 blankets. But that’s not as effective as someone to help.

Eventually the rollercoaster ends and I am left completely drained, mind darting everywhere in a kaleidoscope of thoughts and colours and pictures and emotions. This isn’t so different from when I become overwhelmed, except I am already exhausted and it is very difficult for me to focus the kaleidoscope without some help. Again, at home I stay wrapped in the blankets until finally exhaustion wins and I am overtaken by sleep.

A few random musings from a Brighton coffee shop

It can be quite difficult to find places that work for me to just sit. I enjoy people watching, although admittedly don’t understand the interactions I’m observing. But the sensory aspects of coffee shops can be overwhelming for me. But the one I’m in at the moment is quite good. The music is the type I can cope with and not too loud. There aren’t big groups of people, and normally no young children. (I don’t dislike children, but I find them unpredictable and they tend to shout.)

The sensory aspects are the main things I’m struggling with at the moment – well, that and the anxiety. But the sensory stuff seems to be less within my control and I don’t have as many techniques to deal with them. Sound is the big one, and where I find the most problems, but I have ‘definite differences’ in most senses.

But even though I know that there is a reason for finding certain environments difficult, it doesn’t stop me thinking that I should be able to cope with things and situations that I just can’t. Including agreeing to do things that, in hindsight, are a really poor fit.

Which takes me back to the reason why I’m in this coffee shop today in the first place. Have agreed to go to an event with someone that I haven’t really talked to for a while, and certainly not since I’ve started to go more public with my diagnosis. I don’t even know if she’s aware. So I don’t know quite what this evening will be like. But having a ‘safe place’ to prepare – and this is somewhere I feel safe – helps. (Now if only I could persuade more people at work to have meetings here I’d be all sorted…)

Back home

and I absolutely and completely hate airports.

set off the security scanner. Expecting someone to come and scan me with the wand thing they use (which is sort of OK; I actually don’t mind physical contact with most people – that’ll probably be the subject of another post soon). But no, wanted to look in my bag. Which was confusing and unexpected.

need to find a way of making travel easier. Don’t want to stop…

Travel panic

The one invention that has made travel more bearable for me is online check in. It means I don’t have to talk to people and I can make sure I get a seat that feels safe.

only when it doesn’t work, as it isn’t today (won’t let me check in), I don’t have a plan B. And I always need a plan B (& sometimes Plans C, D, E and F also). So very panicked now. Fear that flight will be overbooked so can’t get on. Or will have to sit in middle seat between strangers. Which I won’t be able to cope with and is likely to send me into full meltdown.

Plan B – such as it is – is to get to the airport really early. And hope. I don’t like that plan much but right now it’s the only one I have.
Continue reading “Travel panic”

The cat is out of the bag

I don’t know why I like that phrase. I basically understand what it means (although I don’t have a cat and, if I did, I’m not sure why I would want to put it in the bag in the first place). But, having the condition I have, metaphors are always going to be challenging.

So the pattern my brain makes is not a cat in a bag but a cat in a box, which makes me think of Schrödinger’s cat. And if that cat is alive then it is going to be pretty unhappy when it’s let out of the box. And it could well attack the first person it sees, regardless of whether that person is blameless or culpable.

All of which is a pretty long-winded way of saying that I was forced into a position today where I had to let my parents know what’s been going on with me. Which I hadn’t intended to do yet. Particularly not over the hotel breakfast buffet on my birthday.

My mother initially took it very badly. And said some things I don’t think I will ever forget. I should have anticipated that reaction, as it’s unfortunately not that uncommon if I say or do something that challenges her unshakeable belief in her own parenting abilities. But I had hoped it would be different. Completely opposite reaction to anyone else I’ve ever spoken to about this. Everyone else has actually been really supportive. (My father didn’t seem surprised. I think he may have suspected.)

I think it will be OK though. They seem to have discovered Google and my mother is basically justifying it as a side-effect of being intelligent (I wish it was that simple…)

So today’s been a rollercoaster, emotionally. And I know there may be more difficult conversations over the days to come. But tonight, reflecting on it, I actually feel a huge sense of relief. The cat may be out of the bag. But at least I don’t have to pretend it doesn’t exist any more.

The problem with travel (and families)

I’m writing this from a hotel in Barcelona. I enjoy travelling to different countries and being in different environments, even when I find it a little overwhelming. Over the years I’ve come up with different techniques to make the whole experience as enjoyable as possible, even before I knew that there was anything different about me.

With my sensory issues, public transport is always going to be problematic. I don’t tolerate noise well, so a station or airport environment is pretty much unbearable for me. I can mitigate it to some extent by using decent noise cancelling headphones but they don’t shut out everything. And don’t get me started on the unfathomable delays, diversions and complete lack of clarity.

but, when I’m travelling on my own, I can normally just about cope.

I wasn’t travelling on my own today. I was travelling with my parents.

Who are not the world’s most sympathetic people. And keep talking at me, and shouting when I say I don’t know the answers or can’t hear what they are saying (it’s actually can’t process rather than can’t hear). And apparently I embarrass them with my actions when I’m desperately trying to avoid a complete meltdown.

At some point I should probably tell them about my diagnosis. But until I am comfortable with my own feelings about this, it’s not the time.

So for now, I’m exhausted and overwhelmed, and not sure how I am going to get through the next two days without a major meltdown. We’ll see…

(Yet another) Bad day

Just that really.

Lectured at for what seemed like forever. Couldn’t process more than about a quarter of what was being said. Couldn’t make myself heard and the odd word I managed to get in seemed to make things worse.

Spent a fair proportion of today in tears. But at least I managed to not bother too many people. Because that’s what everyone seems to want from me. I’m just not sure I still have the ability to hide.

I’m angry now. Angry with myself that I didn’t, I couldn’t cope better. Angry that I was put in the position of having to cope because someone just didn’t think. Angry that people have to think about how to communicate with me rather than just communicating.

I hate being like this. So at the moment, I hate being me. Aspergers sucks 😒

(And now I feel as though I’m about 14!)

The problem with language

Until I started this journey, I didn’t realise that not everyone thinks like I do. I think in pictures and then have to translate my thoughts into words and back again. Sometimes, particularly when I’m upset, the translation process breaks down. Even when it doesn’t, I’m told I need a few seconds longer than most people to process the spoken word. And I can struggle to get my voice heard as many people can’t wait those few seconds.

On the plus side, I’m an incredibly quick reader as I read the shapes of words rather than sounding out. My normal reading speed is around 2,500 words per minute and with speed-reading I can get up to 6,500 wpm.

I also struggle to describe my emotions. It’s not that I don’t feel them – I feel them too intensely much of the time. But language fails me; how can both the spinning kaleidoscope and the cold whirlpool both be described as ‘scared’? To me, they are two distinct feelings and that’s where language falls down.

And I’ve been thinking about language a lot as I’ve started to talk to more people about this whole thing. How to describe what it is I have. I tend to compromise on referring to my ‘condition’. It’s not an illness. And I refuse to refer to a ‘disability’ as I don’t feel disabled. So ‘condition’ kind of works, as a word.

I haven’t even worked out what name to use for my condition. I have a strong preference for “I am…” statements rather than “I have…”. After all, this is part of me; I have recently acquired the label but have always had the condition. But what can I say I am? I have tried “I am autistic”, but that doesn’t quite fit. The mental picture is of someone quite different. And I really dislike the ‘cute’ shortened names for Aspergers Syndrome; if I have to refer to that then it’s an “I have…” statement. So for now, I compromise. I am on the autistic spectrum; I have Aspergers.

Or, if you want to know how I see my condition in my own language, a child’s drawing of a metal scourer.

On the road to acceptance… maybe

So I write bad poetry when I’m emotional. Think it’s when my picture to words translation matrix breaks down a bit, and I find free-form and short statements the only way to put my thoughts into words.

Jigsaw

I have spent tonight revisiting my past.

Unpacking tissue-paper wrapped memories;

viewing them through this strange new lens.

Reviewing. Reassessing.

The jigsaw starts to come together.

Not complete yet. Not even close.

But for the first time I can start to see the pattern,

and think maybe I can complete this puzzle.

There are still some pieces missing

and I will need some time to accept

and to mourn, and to grieve.

For the child I was, crying in the night,

when no-one came.

For my life now, forced to accept the help

that I do not want and refuse to need.

For the future I planned, and now will never have.

So, only partly whole, I put the pieces back.

I wrap them up carefully

and leave them there until I am strong.

Hello world

So I haven’t really had a blog before. And the last time I had a website was back in the late 1990s (happy memories of UNIX computers and HTML4).

The reason I’m starting this now is that I’m struggling to come to terms with the fact that 2.5 months ago I was told I am on the autistic spectrum. So I thought that a space where I could rant against it all, pretty much anonymously, would help me. Just somewhere where I can write things down really, for the times when I am struggling to cope.

Since my diagnosis, I’ve been reading pretty much obsessively to try and understand. But there doesn’t seem to be too much for people like me out there. It all seems to point to trying to build some sort of community amongst people with my condition. But the one thing that I am sure about is that this does not define me. I don’t want to be part of that community. And I can’t see, at the moment, that I ever will.