Sunday, 6 July 2014
Aspergers and the change that diagnosis brought
Came across an old diary the other night. An excerpt:
One hour Ethan can be lovely - playing with the kids, cheerful with me, a pleasant human being. But all it takes is something to frustrate him, annoy him, not go the way he wants or even just take his attention and he'll turn into this miserable, irritable, snappy, aggressive presence who puts everyone on edge and spreads an atmosphere of gloom.
I wrote that in 2008. I remember mentally battling with the same concerns in the year 2000 when I married him. And still today the doubts I had all through the years we were dating and engaged about whether I'm really meant to have pledged my life to this man, rise to the surface.
The fact that all the same things that bother me now about Ethan bothered me then is both depressing and encouraging. Depressing because in the sixteen years I've known Ethan, the same issues remain (although I would say, on the whole, he's improved). But also encouraging in that I know, today, I'm handling the frustrations, disappointments and anger I sometimes feel so much better. The difference, I think, has been the diagnosis. Today when Ethan overreacts, shuts down, lets me down, has mood swings - I see it as a product of his Aspergers rather than a product of his just being a shi**y person or him not loving me very much. And that perspective helps me not to take it (too) personally, not to hold a grudge and, most importantly, to react to his outbursts or retreats inside himself in a way that will help him and hopefully encourage him out of that state rather than sink him further into it.
Yesterday was a case in point. It was the kids' school summer fair. Ethan was supposed to be helping on the inflatable slide (I'd signed him up, obviously!) but, a few minutes after telling him it was time for his slot and sending him off, I noticed he was standing on the outskirts of the activity looking very awkward whilst two very competent women were counting kids onto the ride and taking their money. After, hissing surreptitiously to Ethan I could sense he was already feeling stressed and completely out of his depth. 'I don't know what I'm supposed to be doing,' he snapped loudly at me. And, when I asked whether he'd spoken to the women in charge he responded forthrightly 'Yes,' then, a little less forthrightly 'I've told them I'm here.' To cut to the chase, it was clear that communication between these women and Ethan had not been very clear and, just as I would with a well-meaning but overwhelmed child, I needed to wade in and speak to these women myself.
A conversation later, Ethan was given the role of ensuring each child in a group of seven only had five goes on the slide. Things got rapidly worse. Imagine the context: a loud primary school summer fair, music blaring, kids everywhere, noise on every side, the sun glaring and Ethan, with no facial recognition skills, trying to work out how many times each kid had thrown themselves down an inflatable slide. It became pretty clear pretty quickly that I was going to have to take over, despite the fact I'd just finished a lengthy stint on the bric-a-brac stall! In the past I'd have been irritated, annoyed, exasperated and sorry for myself with the 'hopeless' husband I'd lumbered myself with and no doubt have written it all down in my diary.
These days not only do I not have the time to write a diary (although I guess this is one, of sorts) but I understand. I know that (most of the time) Ethan does his best and I know that (most of the time) it's not his fault. I can recognise that, if he had a broken leg, I wouldn't be expecting him to run a marathon - and I try not to put more on him socially than he can bear.
I also see that we are each in the unique position of being able to compensate for the other's weaknesses. This is something I'm still - slowly and painfully - learning: that, where he falls down, rather than berate him for it, I'm in the privileged position of being able to help him up. And vice versa. We're still learning to do it. But maybe that's the reason we were meant to pledge our lives to each other.