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Thursday, 26 November 2015

Why on earth would anyone marry a man with Aspergers?!

I suppose I got into a relationship with Ethan for two main reasons 1) he grounded me and looked after me and was reliable and strong at a time when I didn't otherwise have those things in my life and 2) I felt I could help him in the areas where he obviously struggled.

It was clear to me quite early on that Ethan had trouble connecting with other people, engaging socially and understanding social situations and cues. But I wasn’t aware of Ethan’s Aspergers until much, much later by which time we were married and had children. The relationship was difficult. We were so different. He frustrated and embarrassed me frequently. I remember being  almost as struck with anxiety as he was before a night out, nervously hoping that this night he would make the effort , that he’d speak to people, that he wouldn’t behave like a miserable git that no-one wanted to be around! I think that was one of the biggest issues early on: that his behaviour and the lack of effort he made with people just made him appear miserable and rude. And why would I want to be with someone like that? We spent a lot of time arguing about how he came across at social occasions and how I’d feel let down by him. Looking back, it must have been hugely frustrating and lonely for him – seeing me breezing about easily chatting to everyone on a night out and knowing that the fact he couldn’t do this – that he could barely hear people and didn’t know how to talk to them – would result in me being angry and upset with him later and there was nothing he could do about it. But at the time, it was inconceivable to me that someone couldn’t learn how to speak to other people and when my efforts at tutoring him in the art of sociability didn’t work, I just saw it as him choosing to be inherently rude and unsociable. A few times we nearly split up – I called off our first engagement. But somehow we stayed together. I think I saw myself as being the person who could change him, who could transform his life and outlook. I’ve always been a sucker for people that ‘need’ me! The other, more positive, factor though is that his unique blend of traits bought with it some characteristics that I found really attractive. In one sense he was hard work but in another, he was really easy. He didn’t want to go out all the time, he wasn’t out with his mates neglecting me in the evenings, he didn’t go to football all day on Saturdays (since then, I’ve realised that he has simply replaced football/sport with his computer!), he was content with me – just me. And being with him was easy – he didn’t talk a lot, I didn’t have to make the effort with him all the time, I could be grumpy and monosyllabic and he didn’t mind. He was always there, always faithful and loyal, always on my side and very rarely complained about any aspect of me – the fact that he was so quiet and simple and stable anchored my flitting, emotional, busy, complicated life. Still today, I am grateful for his simplistic outlook, his unswerving support of me and his plodding faithfulness.

I suppose I thought the big things – his loyalty, his dedication, his hard work, his love for me, his commitment – were worth more than him being able to socialise or being positive. I grew to need him, however much he infuriated me. 

Our relationship and subsequent marriage has never been easy. In the early years I often fantasised about divorce. I felt lonely often, despite being surrounded by friends, and was regularly frustrated, hurt, angry and disappointed by him and his reactions to situations. I spent years trying to artificially carve out friendships for him which never amounted to anything. I suppose I felt I needed my decision to be with Ethan endorsed by the fact that other people wanted to be with him too. The fact he had no real friends was a constant reminder to me that he was just not a likeable person, which just reinforced my doubts as to why I was with him.
Since Ethan has been diagnosed with Aspergers though and I’ve learnt about and understood the syndrome, life together has got better; good even. I no longer try to turn him into something he can’t be which means we’re both less frustrated. We’ve, almost without realising it, made concessions and compromises in our lives that make space for the other person and their needs and, I must credit Ethan here, he has changed. I couldn’t see it while it was happening – it wasn’t happening quickly enough or in the right direction but, looking back to our first years of marriage, he is so much more sociable. He’s learnt tactics for monitoring his behaviour and, although it’ll never come naturally, he’s learning to adapt to circumstances and other people’s needs. He’s even made some friends!

It’s been a rocky, sometimes painful road. But I’ve learnt so much about myself and discovered that I’m married to a unique, complex, incredibly loyal and faithful man who never gives up on us despite the fact that life and relationships are so hard for him. I guess any marriage – any joining together of two totally separate individuals with different hopes, dreams and personalities – is going to be hard. In the end I think it boils down to whether the two of you are prepared to make it work, however much that demands of you. We both needed to be willing to change – not the essence of who we were but how we behaved and reacted, and we both needed to be willing to have our views, perceptions and expectations of life fine-tuned by the other. 

As I write this, Ethan is making me a bacon sandwich before heading off to work for ten hours in the gloom and rain of the day. And he knows, as he does that, that I’m writing this blog post about how flipin’ difficult he is! He is, at heart, a kind and loving man. I’m a lucky woman.

Wednesday, 11 November 2015

Gaining his perspective

I’m currently writing, with Ethan, a chapter for an e-book on what it’s like (for both people) to live within an AS/NT partnership. Our topic is family occasions and the idea is that I’ll write about some family occasions that I’ve experienced with Ethan and then Ethan will give his take on the same situations. 
The process of comparing our different views to the same events is enlightening!
Without giving too much away, I talk about a family Christmas at my sister’s house when about thirty people were having a jolly old time: and two weren't. Ethan spent the evening switching between looking vacant and detached or disapproving and contemptuous. Sometimes he managed to roll out all four looks simultaneously. I was miserable because it was yet another social gathering in which Ethan was being rude, disengaged and downright unpleasant. And I felt embarrassed, frustrated, upset and angry at him. I just wanted us both to be able to relax and have a nice time. I distinctly remember looking past the faces of a roomful of laughing, happy, sociable people during a game of chubby bunnies and seeing Ethan glaring at the scene unfolding before him with a look somewhere between confusion and disgust, and my heart genuinely sinking into the pit of my stomach. In my head (as it had been many times before and has been since) that was the end for us.
When Ethan showed me yesterday what he’d written about the same occasion, I realised that I’d never actually asked him before to explain to me what was going on inside his head at the time. Ethan talks about the noise, about trying his hardest to engage and be sociable but having to almost instantly give up on conversation with people as the surrounding noise of people, music, kids shouting and other conversations, made it impossible for him to hear what a person was saying to him. He talks about how he was noticing the dog and cats and seeing little fingers touching food on the buffet table – wondering about the cleanliness of the house and whether, prior to us arriving, the dog and cats had been sniffing around the food too. He was thinking about how bright the room was and the poor quality of the lightbulbs. Then, during the playing of Chubby Bunnies (a custom he’d never heard of, let alone encountered) he was genuinely confused. To him, this wasn’t a game. It was gluttony. There was no point to it, nothing fun about it, no challenge to it; just another opportunity for people – even children – to stuff their faces with more unhealthy food. Thus began an internal scrutiny of the parents in the room for letting their children gorge themselves on so much sugar. I don’t know what he must have thought when I had a go – who did he have to blame for that?!
I realise that all of this doesn’t make for a very fun person spec. But it does explain where he was coming from. His brain simply could not by-pass the practical aspects of what he was seeing: how is stuffing yourself with marshmallows until they drop out of your mouth fun? Sensually, he was over-stimulated, anxious and completely out of his comfort zone: he was drowning.
My reaction was to glare at him, to mutter quietly to him about what a miserable, awful person he was, to tell him how he had ruined the evening for me and probably for everyone else. Psychologically, instead of throwing him a rope, I pushed him further under.
Things are a lot better these days. We’ve had a diagnosis for one – so a whole new level of understanding has opened up to us both. And we’ve learnt to cope better with social situations. It’s required us both to adapt – Ethan more than me – and to make some changes to what might be our default settings. And we’ve adopted some techniques and compromises to make life easier.
We’re still together so we must be getting better at understanding each other’s worlds. Writing the chapter for this e-book is just another part of the journey.