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Tuesday, 25 February 2014

Lessons in Aspergers for a neuro-typical partner: Lesson 1

Lesson one in my journey to enlightenment regarding life with an Aspergers spouse: to accept that Ethan has Aspergers.
One and a half years on from diagnosis, a year after starting this blog and sixteen years into our relationship, you'd think I might have cracked this one.
And I have, in theory. Ethan has Aspergers. I get it. There are certain traits and behaviours he has that make socialising hard, that mean emotional connection in our relationship is often absent, that mean he has a short fuse with the kids when he feels he's not in control, that mean he may not hear a single world I say when I'm speaking about something that really matters to me. I get it. Really. In my head.
In practise though, I still act as though Ethan is neuro-typical. Despite experience saying otherwise, I still cajole him into coming to noisy parties in pubs full of people and background noise, and hope that this time he will be bright and bubbly and sociable, or at least, engaged with proceedings. I feel let down (and make sure he knows it) when he retreats into himself at rowdy family gatherings - filling the role of spectator rather than participant. And, this being my latest mistake, I arrange family days out during half-term in busy, chaotic, noisy city centres - travelling on over-crowded public transport (because our boys like the train) and visiting loud, over-stimulating tourist attractions followed by bright, busy restaurants with our three young children (aged 3,5 and 8). It was stressful for me. Only now, after the event when I bother to stop and think, can I appreciate how excruciatingly stressful it must have been for Ethan.
The problem is that I don't stop to think very often. I revert instead to my impulsive reaction which is to have a go Ethan for being irritable, to feel disappointed and bitter, to mutter criticisms and put-downs about Ethan's failings and to go on making my plans the same way I always have.
I'm not saying that, as a family, we shouldn't ever do anything that Ethan finds uncomfortable (all we'd ever do would be to watch TV and play computer games!), but that, in our plans and arrangements, we should find space and make allowances for Ethan's Aspergers.
So maybe, on our family day out, we should have driven into Manchester so that Ethan would have had a sanctuary at the beginning and end of the day. At future family gatherings, perhaps Ethan and I should agree beforehand that he'll be sociable for a couple of hours before taking himself away somewhere for a bit of downtime to recharge.
In short, I need to let the fact that Ethan has Aspergers spill out from theory and knowledge into affecting how we do life: the places we go, the places we don't go, the choices we make. Sometimes it may mean doing something on my own. I went to a 40th birthday party by myself at the weekend - and it was fine: I didn't spend the night worrying about what kind of an impression Ethan was making. Sometimes it will mean adapting our plans to include some downtime for Ethan, or choosing to go for a family walk in the countryside rather than a family whizz about town. Other times it will be making the conscious decision not to nag Ethan when he gets home from work in the middle of a glorious, sunny spring day and chooses to sit in the dark, shutters down (metaphorically as well as literally) and watch a film!
Ethan needs to accept that he'll have to do some things that he'd rather not do. And that, for the sake of the family, he'll do these things as cheerfully and sociably as he can. And, for the most part, he does try really hard to do that. But I need to accept that there needs to be give and take. That it's not just Ethan that needs to adapt and that, sometimes, Ethan just needs to opt-out for a while. Or that it's our turn, as a family, to do something that suits Ethan rather than always trying to make him fit our world.

3 comments:

  1. Well said Laura, I agree that sometimes you just have to do things on your own, rather than stress your partner out and then have to deal with the consequences. My husband can't cope with big social gatherings, I used to get upset when he disappeared but now I just feel grateful that he is out of the way and one less thing for me to worry about! I have sometimes found it hard to explain to people why he isn't there, but now I either say he has had to go and see his mum, or that he is working away.
    It's not easy is it, but please keep writing, your positivity is inspiring
    X

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  2. Hi Laura, Thank you for your honesty! I am in a 15 year marriage to my husband who was only just a few months ago diagnosed with Aspbergers. I googled it on a break at work this evening just to find something that makes sense and helps with the pain of this process. I found you. THANK YOU! I am sorry life is a struggle for you as well. I am going to learn with and from you!

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    1. Hi Julie, Thanks for your message. It's really encouraging to know that my blog is helping other people who are muddling through similar issues. Somehow just knowing that it's not just you really helps, doesn't it?!
      When my husband was first diagnosed I found a real lack of British sites/blogs to support neurotypical partners (who are as much if not more in need of support as their Aspergers spouses). That was partly the reason I started the blog. There's also a new, UK website coming soon called Different Together - I think it should be live by next week. Check it out - it offers lots of support and advice and the opportunity to hook up (either virtually or physically) with others who have partners on the autistic spectrum.
      Thanks again for your encouragement - it really does help spur me on to keep writing!

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