Well, I’m not sure whether to keep up this blog or not, since it was intended as a writer’s blog and then I completely stopped writing. Anyway, a friend suggested I write another post on aspergers/autism while I figure out what I’m doing, so here it is. My topic for today is… drum roll… the changes to how you are treated after disclosing your autism spectrum condition.
I’m going to try and keep this pretty short, to avoid it turning into a rant, and because I’m ill with the flu (or similar) and really ought to be in bed. There’s no reason why it should be a rant, really, because on the whole I’ve had nothing to complain about in the way I’ve been treated post-diagnosis. Actually let me stress that: my experience has generally been positive.
The reason for this post then is more about supporting those autists who fear the reaction to disclosure, or who’ve had bad experiences – and hopefully to open the eyes of those intolerant folks who create this situation by their lack of understanding and consideration.
So, here are some of the negative reactions we can and do receive, once people are aware we’re on the spectrum:
No – wait – we need a foreword. I imagine there may be readers for whom the realities of AS which have been ground into our souls may not, in fact, be at all obvious. So…. in essence, the issue is that we spectrumites tend not to come across as being particularly warm and likeable people. In writing we might be OK, but in person and in speech we (typically) don’t present a good impression. Hence, we are always at a disadvantage compared to others in social situations. Always. Bearing that in mind, let’s proceed to negative reaction no. 1:
Invalidation of our opinions
Because we don’t express them at the right time, or in the right way, or to the right person.
The classic (and devastating) example is when there’s a major project on at work, with flaws in its implementation. Guess who, with the best of intentions, will stand up in the group meeting and point out all the ways in which the project cannot succeed? Guess who then finds themselves kicked out of the team, or even out of their job? (No matter that 6 months down the track, they may be proven right by failure of the project – or the quiet implementation of their recommendations to save it).
But there’s a less spectacular, more insidious type of invalidation that happens as well. There’ll be someone who just doesn’t like us, or feels threatened by us (why?!?). Once your diagnosis is out, it’s easier for them to discredit anything you say. Behind your back, friends and colleagues are being told: “Ignore what Kay said, she doesn’t understand. She has Aspergers; she doesn’t get it.” And suddenly you have no voice, no opinion deserving of consideration.
So tell me: Is it really the autist who lacks understanding here?
Discounting our emotions
Because our inner feelings are judged by our outward behaviour.
I can’t speak for others on this, but personally my biggest emotions are on a time delay – I can be told of someone’s misfortune, and two days later feel completely devastated. Yet society imposes on us the requirement to respond appropriately in the moment. Argh. Heaven forbid one should be caught smiling at such news. People see us going through the motions – trying to fake the right reaction – and assume we have no feelings, hence the “lack of empathy” thing.
In fact, my emotions are extreme – they go from zero to ten with nothing in between. It’s overwhelming, to be honest. In an emotive situation I may freeze or run away to prevent a freak-out. So I’m standing there frozen and displaying no emotion whatsoever, and people may assume I feel nothing. Or maybe two days later I can finally recognise and voice my emotion, and need to talk it through, only to be told I should be over it and to stop making a fuss?
Who is it that really lacks empathy here?
Because we say or do the wrong thing.
Social skills training is the treatment of the moment for youngsters with Aspergers, which is understandable. I got the opportunity to learn social skills, too, in a way (it’s called life). And yes, you can improve a little, with practice, but it’s a bit like trying to install software on the wrong operating system. AS is not a social condition, or even behavioural (even if that’s how it’s diagnosed), it’s neurological; we’re just wired differently.
The problem comes when people make assumptions and judgement. When we forget to greet someone we might be considered rude, when we don’t join the conversation we’re unfriendly, when we join the conversation at the wrong moment we’re disrespectful, when we say something inappropriate we’re thoughtless… I could go on, but you get the picture. You’d think it would be easier with a diagnosis, but I’m not sure it is. Without a diagnosis, we’re weird; with a diagnosis, we’re not trying hard enough.
What happens is that our friends and colleagues stop talking to us, or their manner towards us changes, becoming distant or cold. They don’t tell us why. If we press them to find out what we did to so deeply offend them we might be told “you ought to know”. Which, if you think about it, is a bit like telling the blind person who trod on your foot to watch where they’re going.
Tell me, is it the autist who has the communication problem here?
I don’t believe the above behaviours towards people with AS are uncommon, I think they’re happening every day, all around the world. Maybe they seem like small, inconsequential things taken individually, but for those on the receiving end, they can add up to serious problems.
There’s a word which used to have the innocuous meaning: “the ability to recognise the difference between two or more things, especially the difference in their quality”. Yes, I’m talking about discrimination. Unfortunately for those of us on the spectrum, our behavioural and communication differences mark us out.
We are the books with bad covers.