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Friday, 15 February 2013

Aspergers and friends: no man is an island

I got a Valentines card from Ethan yesterday. Even though we'd (rather lazily) said we wouldn't bother.13 years of marriage, 3 kids and Aspergers have pretty much killed any romance, sex-life or passion that might ever have been there. Not the love though. That still hangs on by a thread.
Anyway, this card contained the most emotion and tenderness that I've got from Ethan for a long time. In it, probably for the first time, he told me that he was finding life really difficult knowing that he has Aspergers. And that he needs to share his struggles with me more.
When I have time to analyse it, I know that life, of course, must be particularly difficult for Ethan. It's just hard to keep that knowledge at the forefront of my mind when he comes in from work and slumps on the sofa on his Iphone (exhausted from the effort of being sociable all day), while I make tea, interact with the kids' incessant chatter, set the table and oversee homework. Ethan seems to be able to zone in on what he's doing and shut the rest of us out. I know it's his Aspergers. I know he needs to switch off, amidst the chaos, for his own sanity. But it feels bloody annoying and isolating and unfair when you're left keeping everything together on your own.
Anyway, the point is, Ethan shared his struggle with me. He admitted that he's finding things really hard (and showing he's struggling is in itself a struggle for Ethan).
I probed a bit, about which aspect of Aspergers he was finding partiuclarly hard. The answer came instantly: Not having friends.
Having friends is such a big deal in our society and our generation of 30-40's. It defines us, communicates to the world whether we're a nice likeable person...or not, gives us self-worth. I know that, before the Aspergers diagnosis when I would spend excrutiating hours thinking about whether I'd made the biggest mistake of my life marrying Ethan, I judged his personality, in part, by the fact he had no friends. I saw this as one of the biggest indicators that he must indeed be the irritable, rude, insensitive, difficult, self-absorbed person he portrayed so often. And therefore, WHAT ON EARTH WAS I DOING MARRIED TO HIM?!
In my world friends, and what people think of me, is so, so important. Too important. I am lovely and funny and chatty and kind to everyone - except my family who get the rough end of me far too often. But that's normal. At least, to the outside world, I am a nice, friendly person with great social skills and, most crucially, I make lots of effort with lots of people - and that's proved by the amount of friends I have.
So I can't offer Ethan the comfort of saying that having friends doesn't matter. Because for us as individuals and for how society views us, it does.
It may be that, without the pressure from society to have friends and be sociable, Ethan would be quite content with me, his kids, films, a computer, lights (I'll talk about the light obsession another time!) and the odd book on Aspergers. But he can't escape the society he's in. He wants what other people have got. He wants to fit in and feel that he's liked.
All this is admirable and I want to help him build friendships (he can be very sociable when he tries hard, and he's quite nice to chat to when the conversation is about something he's interested in). But making friends requires effort that Ethan either isn't willing or isn't able to make.
For example, within a couple of hours of him sharing his desire for friends, we were in a toy shop with our two sons and our older son's friend. Our boys were allowed to chose a treat for earning all their smiles this week (where would we be without a bit of bribery?!). Sam's friend started looking at the little animal display with Sam. And Ethan, noticing this, stated brusquely, 'You're not getting anything Joel.' Imagine, 4-years-old, in a toy shop where your two friends are choosing a toy, being told roughly that you're not having anything. I know I said in my post on Tuesday that I was going to try to see past the bad to the good in Ethan. And to encourage rather than criticise. But you can't let that go...(I did buy Joel a £3 racoon, if anyone's worried). Ethan followed this rudness by looking miserable all the way home (the natural state of his face is a frown) and the only time he bothered to talk was to tell one of the boys off (for going on the grass - too muddy).
I sympathise with Ethan and his difficulty in making and keeping friends. But, really, if he wants friends he's got to work at it, just like the rest of us. Being nice, making the effort and interacting with other people isn't always easy. But that's the recipe for building friendships. Aspergers or not.

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