A note on language: I wrote these posts in 2016, when I was still uneducated about problematic language and functioning labels. I’ve chosen to republish these posts exactly as I first wrote them, unedited, and therefore you will notice that I use vocabulary I no longer choose to use, including ‘Asperger’s’ and ‘ASD’. I prefer the term ‘autism’ these days, and that is the term you’ll see in more recent posts. You may also spot some person-first language; these days I’m more likely to say ‘autistic person’ than ‘person with autism’.
I’ve been thinking about what I can tell you about Asperger’s. Quite a few of you have said you really don’t know all that much about it (thank you for saying so, and for being curious!). Asperger’s is a neurodevelopmental condition, which the National Autistic Society describes as “a form of autism, which is a lifelong disability that affects how a person makes sense of the world, processes information and relates to other people”. It can be tricky (and long!) to explain exactly what this means, because Asperger’s is a spectrum disorder that can affect people differently (it’s been said that if you’ve met one person with Asperger’s, you’ve met… one person with Asperger’s).
According to all the reading I’ve done, it’s increasingly being recognised that the condition presents differently in females than in males, too (which probably partly explains why it took me so long to work out that I had it). So I’m going to start by telling you the bit I really know about: what Asperger’s means for me.
What Asperger’s means for me
Some social effects of my Asperger’s…
It feels as if everyone else has a script, but I’m adlibbing. I have to admit that this isn’t my description of what it feels like to have a conversation as a person with Asperger’s, but I identified with it immediately, so I’ve borrowed it to use here. Basically, it means that all the social stuff that is apparently obvious to everyone else – from a very young age – is far from obvious to us. Personally, I’ve always felt as if everyone else was born understanding how conversation and social interaction works, while I had to pick it up like a foreign language.
As a child I had no idea how to start a conversation; I didn’t automatically know that it was acceptable (or even normal) to ask people questions. If another little girl at school was crying it wouldn’t occur to me to go over and find out what was wrong; I would watch the other girls in wonder, thinking to myself How come they knew to do that but I didn’t? I didn’t have any natural interest in what anyone else thought or did. I thought that conversation was just telling people things. It took me years to work out that if you ask people questions, conversation will start to flow.
This has all become easier for me over time (or at least, I’ve learned to be more successful socially through watching and imitating), as I’ve encountered a wider range of social situations, and had a chance to practise lots of the more common ones over and over. It’s definitely something I’ve had to consciously learn. But I still struggle with conversation topics. If you pick the topic, chances are I can converse just fine about it. Leave it to me and unless I know you either a) extremely well or b) not at all, we could be in for an awkward time. (In case you’re wondering, not knowing someone at all means that there are several acceptable conversation topics I could pick, because I know how to ‘do’ the one that goes So, what do you do? Once we’ve got through all the basics I can get a bit stuck (though not always; it depends a bit on who I’m speaking to).
I’m face blind. This just means that if I see someone I’ve only met once or twice, or see someone who I’ve only ever seen in one place in a different context, there is a strong chance that I won’t remember them. I’m also prone to mixing people up when I don’t know them well (which was great fun as a teacher, trying to get to know classes of up to 32 students!). I once had an excruciating experience with a hairdresser who had cut my hair for years; when I met her out of context after not seeing her for a year I didn’t recognise her (and yes, to answer your question, she was quite offended…).
I get exhausted by social situations. Don’t think for a minute that I don’t like spending time with you. I just find it physically, mentally and emotionally tiring to be around other people, and the bigger the group, and the longer the event, the worse it is. It’s probably the most difficult thing about my Asperger’s, because I often want to take part in a social activity, but invariably it will go on far longer than I can cope with, which means that I either get increasingly monosyllabic and grumpy, or have to leave early. Weddings are the worst. Don’t misunderstand me: I love celebrating my friends’ happiness. But doing it for twelve hours straight, surrounded by a hundred other guests (many of whom will be strangers), exhausts me so badly that I end up with a ‘social hangover’ far worse than the one from all that wine.
…and some that affect me in a more physical way
I have very poor spacial awareness and peripheral vision. This is the bit of having Asperger’s that made games at school a complete nightmare. If you throw a netball at me, the chances of me aiming it towards my own team’s net (or throwing it to someone on the opposing team… that’ll be the faceblindness again, which gets worse in stressful situations) are about 50:50. That’s if I actually saw the ball coming towards me in the first place, which is unlikely. (And as a teacher, if you’re a kid in my class flicking paper balls across the room, it’s your lucky day. I will almost certainly never be able to work out where they’re coming from.)
I have a strong physiological reaction to light, texture and noise. Basically, this amounts to a vampire-like aversion to strong sunlight (and please don’t put me in a room with fluorescent lighting or strong spotlights), an inability to wear clothes that are ‘scratchy’ (just ask my wife about her grey wool jumper) – or contain too many man made fabrics – and a tendency to cringe at certain loud noises (just ask my dad about using an electric drill near me when I was a kid. For that matter, ask my wife about her using an electric drill near me now…).
I’m not talking about finding these things irritating – it’s more like a weird combination of near-pain and a sort of shivery, distressed panic. As a child I had a gorgeous pure wool jumper (I must have been about five or six). It may have been beautiful, but for me that jumper was pure torture. Whenever I put it on I just wanted to keep very, very still, preferably with my arms stretched out on either side (Getitoffgetitoffgetitoffgetitoff!), to avoid having to feel that scratchy wool moving like sandpaper against my neck and wrists. I felt as if I was being squeezed in an itchy vice. As an adult, I’m obsessed with feeling the texture of clothes in shops before buying; no online clothes shopping for me (yes, I know, that’s real hardship, right there!).
These are just a very few of the ways that Asperger’s has affected me: the ones that happened to pop into my head first when I sat down to write this post. I’m planning to share more over the coming weeks and months, if people continue to read and be interested in this blog. What would be lovely would be if some of you emailed me any questions you have. If you do, I’ll do my best to answer them in a future post.