I was going to do a post about how having a cup of coffee with a couple of mums I don’t really know made me feel weird today, but then I realised that I haven’t yet talked about the Asperger’s thing so it probably wouldn’t make an awful lot of sense. So here’s some talking about the Asperger’s thing.
2014 has been quite the year of self-discovery for me. At the beginning of January I found out that I have Asperger’s (or a generic autistic spectrum “disorder” as it’s so unhelpfully called these days) following a gentle suggestion by my mum after she witnessed me having what can only be described as a complete meltdown over the baby’s first Christmas not being exactly everything
society told it me it should be I thought it should be. She’d seen that kind of meltdown before, many times, when I was growing up and as a stroppy teenager, but admitted she’d always just put it down to my general temperament. Ex-boyfriends and one or two of my very closest friends have also seen it over the years they’ve spent with me, probably putting it down to me sometimes being a “challenging” person to be with. And I am only too aware of the horrible darkness that gathers, uninvited, at the edge of my cognisance from time to time, engulfing me and dragging me to a place I don’t want to be and can’t seem to fight my way out of. I suppose I always thought it was some kind of embarrassing involuntary temper tantrum. Or a tendency towards spontaneous depression. God knows what everyone else thought. But seeing how I overreacted to the point of refusing to open my presents or even talk to anyone until about 9pm on Christmas Day – as someone who is now supposed to be a reasonably responsible adult in charge of a small child – made something click for my mum and, having managed to coax me half way out of the black cloud, she gingerly posed the question of whether I might want to look up Asperger’s Syndrome on the Internet.
As soon as I Googled it I knew. Life as I’d come to know it essentially imploded in front of my eyes as I sped through page after page of information. I found this wonderful reassuring website that made more sense to me than anything had ever made. And yet I’d never been more confused in my life.
I can’t really put into words how it felt to suddenly realise that the way you perceive yourself, all the experiences you’ve ever had, and the world around you, is essentially wrong. It was as if everything I thought I knew about myself and my life shifted just slightly to the right. In the weeks after this lightening bolt of realisation I spent evening after evening sitting on my bed devouring websites and blogs, alternating between excitedly shouting “YES! YES THAT’S ME!” at the screen and just sobbing. Huge racking sobs. At how I’d spent so many years struggling to fit in and be “normal” and wondering why, time and time again, I never quite managed to pull it off. Beating myself up over those quirks in my personality that made me awkward and disagreeable for no logical reason. Desperate to be able to handle a social situation like a “normal” person. Just feeling so bloody weird and different all the time and never being able to explain it to anyone. No wonder I was exhausted. I’d spent my whole life convinced I could fit my square peg into that round hole if only I tried hard enough. I have been so hard on myself. So unsupportive of my own foibles. And so difficult to be around! No wonder friends and boyfriends drifted away. My poor family! I was grieving, in a way, for the kind of life that maybe I could have had if I’d known more about myself and embraced it all rather than battling – fruitlessly – against it. Anger at how it turned out that none of it had needed to be that much of a struggle. And then relief, that finally I had some understanding of why, and that so many of my struggles were not actually my fault and maybe things would be easier from now on
Things didn’t turn out quite as I’d hoped, in the end. It felt like every single person I told doubted what I was saying in one way or another. I found myself anxiously justifying why this was a thing to my very closest friends. The next couple of friends I told expressed an initial scepticism along the lines of “I’ve never noticed any of that in you” and I basically left it at that. My dad and step-mum essentially told me not to be so silly, like it was just an attention-seeking fad. Not one of these people know how deeply deeply hurt I still am by their reactions. And I didn’t tell anyone else. Even the people who do know about it don’t ever mention it. My mum is the only person who brings it up in conversation like it’s a normal established part of my life. I don’t know why it has to be like that. It shouldn’t be a secret. I am not ashamed of it. I thought I would be able to tell everyone and they would instantly write off any of the occasions where I had been “weird” in the past and accept me for who I am in a way they hadn’t before. I thought all the problems I’d had at work would be fixed and people would like me more once they knew that certain things about myself I just can’t help. I thought I’d have more confidence overall just to be myself without trying so hard to be like everyone else. But none of that happened. Nothing much changed, other than my own self-awareness. It still makes me sad that other people have made me feel like I have to keep this to myself. But then there’s always the possibility that my perception of all of this is just the Asperger’s talking…
I’m not going to do a master-post on what it feels like to have Asperger’s. This website, and the one I mentioned before, explain the basics better and more comprehensively than I ever could. There is also this article about being “less annoying” at work, which is worth a read if you’re interested. I don’t know where I pulled this from, but somewhere along the way I made a note of this line of text, which I feel sums up a lot of my life so far:
Many people with high-functioning autism or Asperger’s Syndrome are spending most of their time in your presence doing difficult and tiring things to accommodate you.
Yeah. And we’re exhausted doing it.
To be honest I don’t really know what it feels like to have Asperger’s. For me, at least, it’s a bit like an optical illusion – if you look at it straight on you can’t see it properly. I’m aware that it’s there, and but having found out about it so late, when I’ve spent so long trying to work around it and developed so many coping strategies in a bid to be ordinary, it’s not clear where my actual personality and character ends and the Asperger’s begins. To look it in the eye would be to attempt to unpick the majority of my muddled 29 years of life. For now it’s enough just to be able to reassure myself that I’m none of the negative things I’ve spent so long thinking I was.