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Thursday, 5 March 2015

Aspergers and spending a night in their shoes



“Can I be really honest with you? I absolutely hated every minute of that party. I hated the awkward mingling in that room when we arrived with so many people crammed in. I didn’t recognise anyone and everyone was talking at once so I couldn’t hear what anyone was saying. I hated being squashed onto that table and having to think of things to talk about with the same few people for two hours. And I hated when the music started. That was the end of the night for me. I couldn’t hear what anyone was saying, I got fed up of saying pardon, I didn’t want to dance. I just hated it.”
These were Ethan’s words the morning after a 40th birthday party last weekend. I know such things aren’t his cup of tea. I knew he was unlikely to enjoy himself (although every now and then there are social engagements that he enjoys - but he has to be in the mood and ideally there should only be one or two other people that he is speaking to at any one time, no interruptions between speakers and minimal background noise). I felt slightly nervous in the run up to this 40th birthday party. It was going to be full of friends from school whom I hadn’t seen for years and I really wanted to enjoy it. I was worried that he’d be rude, disengaged, a miserable presence or that, even if he wasn’t any of these things, I’d be on edge all night waiting for one of these behaviours to manifest itself.
The fact is, he was none of these things. He chatted to people, he smiled, he even danced briefly when backed into a corner. He didn’t even moan privately to me (not even when I took too long to say goodbye to everyone and we missed our taxi home!). No-one, not even me, would have guessed how much he was hating it.
Amidst my demands for him to tow the party line, come along to events he hates and to SMILE and converse his way through them (mostly for my sake but also for his – when he’s made the effort, it does boost his self-esteem, he does feel more a part of things and it does lift his spirits, as long as he knows he can sit down by himself in a dark room afterwards!) – but amidst all this effort from him, I wonder if I would – if I do – do the same for him. Would I give up one of my precious evenings to play computer games with him if it would make him happy? I switch off if he starts talking camera-angles and lighting effects in films and I’ve never been to a technology show with him.
To be honest with myself, I suspect that, rather than meeting him in the middle, we meet ¾ of the way along, in my favour. Maybe immersing myself in something he likes and I hate for an evening would give me a valuable glimpse into his world. After all, it’s us who are meant to be good at adapting isn’t it?!

Thursday, 26 February 2015

Aspergers money and the little irritations



Some days and weeks I am quite tolerant of Ethan’s eccentricities and self-absorbed ways. This week I’m not.

When Ethan greeted the news that he’d had a pay-rise of an extra £60 per month with the words ‘So no more arguments about me buying a car’ I was irritated. An extra £60 a month is not going to cover the £10,000 car that he’s decided he absolutely must have. More to the point, perhaps that extra £60 a month should go towards paying off our overdrafts or credit card bill or being able to go on a family holiday in the summer. His view is that he’s got the money by working hard so it’s his to do with what he likes. The implication then surely being that I don’t work hard (although I would say being at home with the kids the bulk of the time plus working part-time is equally as hard a role as his is). Even if he acknowledges that I do work hard (which he does, to be fair) that doesn’t seem to earn me £10,000 to spend on myself.  The difference between us in terms of money seems to be that I think of us as a family unit and he thinks of him. Fume. 

Secondly, what sometimes (OK, very occasionally) seem like unique, funny, harmless little ways he has, are really annoying me this week. Things like him having to have his own towels (God forbid he should have to use a towel that has touched the body of another member of his family!) and having to have certain pillow cases (that therefore need to be washed, dried and put back on his pillows in the same day) and removing clothes from radiators the moment I’ve put them on there and stamping his foot or banging the table when he sneezes. Grrrr.

But the most I can do (until Easter Sunday anyway) is calmly point out these things, or take a deep breath and walk away...I’ve given up arguing with him for lent.
If you’re interested in talking to others about how issues of money play out in your AS/NT relationship, head to http://www.different-together.co.uk/lets-talk-forum/ and join the Money Matters thread. You’ll need to become a member of Different Together (if you haven’t already) to join in the chat, but it’s very easy to do – you just need to click on Join on the forum page and follow the quick and simple instructions. See you there!

Sunday, 15 February 2015

Living with Aspergers - two years after diagnosis

Had a rare time of Ethan opening up to me this weekend.

Managed to negotiate the myriad of obstacles that needed to be surmounted in order for Ethan and I to have a whole day and evening together in Manchester. We had afternoon tea, we looked round an art gallery, we drank cocktails - and it was during this part of the day that Ethan, relaxed, contemplative and, crucially, given the space and time to really talk, told me how it's feeling, at the moment, to be living with Aspergers. It changes, depending on what kind of mood he's in, how well he feels he's been coping with life, how tired he is. But one of the tensions between us recently has been how much he drinks - bottles of rum are disappearing fast, and none of it is down to me.
He told me that the only times he feels relaxed and comfortable in his own home is when he's had a drink - it helps relax him. Otherwise, he says, the mess and clutter and noise and kids, make him feel really stressed out. He can physically feel the stress, he says, building up inside him, and he either has to let it out by getting angry and irritated, shouting at the kids and being grumpy with me, or by drinking or watching TV on his computer (or preferably both) to dispel the stress. I'd been thinking lately, how well he's been coping with all the mess in the house brought about by lack of time, three kids and, to be honest, lack of inclination. Obviously not - he's just given up mentioning it, finding the solution instead in a tumbler full of rum. It's not good.

He also says that, although initially knowing that he'd got Aspergers had made things easier - since he now understood why he did the things he did, recently knowing has made things harder because he's so much more conscious of the way he is. Whereas before he might make a faux-pas or act insensitively, he'd be blissfully unaware of it. Now he's analysing everything he says and does - and knows when he's, in his words, 'been a bit weird'. Being constantly and publicly aware of your shortcomings every day and not really being able to do much about them, must be hard. And to top that off, he has a wife who, rather than offering comfort, points out how he's messed up and nags him about not caring. Seems he cares a lot more than I've given him credit for.

I do know, frequently and vocally, that it is hard for me to be married to someone with Aspergers, but it's equally as hard for Ethan - and so we need to help each other.


We've agreed that Ethan will only drink one of the days that he's off a week - I'm hoping he'll honour the agreement. I would write that I'll seriously undertake to do some tidying up but I know I won't. I barely have time to pee at the moment. The best I can promise is that, amid the mess and busyness of life, I'll make sure Ethan has his time to escape - with a cup of tea, not a glass of rum. 

Monday, 9 February 2015

Aspergers, kids and the bigger picture



I worry slightly, as the kids grow older, what kind of relationship they’ll have with their dad by the time they’re teenagers.

The kids really do push Ethan’s buttons – and the speed of his transformation can be frightening.  Often it’s over the smallest, most ‘normal’ of things – they don’t do what he says straight away, they shout too loud, they answer back: all annoying tendencies that go along with living life with three young children by your side. Ethan though, depending on the kind of day he’s had or how he’s feeling, will snap like an overstretched piece of elastic over these things – metaphorically then smacking us all around the face with his frayed ends. 

Yesterday, Oliver pushed Sam down the stairs. I accept that warrants a stern reaction and an appropriate punishment under the controlled judgment of a calm and rational parent...

Ethan lost it. 

He grabbed Oliver’s arm and yanked him upstairs, bellowing at full volume as he did so. As Oliver crept back down to see if his brother was OK, Ethan dug the full force of his elbow into Oliver’s ribs, shouting at him to “Get away from us, NOW.” Ethan was almost shaking with rage. I told him to go away and calm down and I led Sam into the living room to give him a cuddle and assess his injuries: bit of a bump on the head and a bruise forming on his cheek. Meanwhile, Oliver had been pushed up the stairs by his fuming father, smacked twice on the bum and sent to bed. I abandoned the injured party (who must have been feeling very put out that the perpetrator of the crime was getting all the attention) and went upstairs where Oliver was crying into his pillow. 

“I’ve told him about messing around on the stairs,” Ethan was still shouting and was now really out of breath, through a mixture of exertion and adrenaline, “he has to learn.” What Ethan didn’t know because he has no insight, had never thought to ask and doesn’t plug into what’s going on around him is that, minutes before the tumble down the stairs, Sam was telling Oliver to hit him - to make him melt (they were playing Minecraft and Sam was the zombie). They had been happily chasing each other, Oliver whacking Sam and Sam dramatically ‘melting’ in a heap. So when Sam started descending the stairs four-year-old Oliver, caught up in the game, hit him. He hadn’t, as Ethan’s reaction suggested, thought ‘ha, he’s on the stairs, here’s my chance to really do some damage.’ 

Yes, of course, he needed to be told off, perhaps punished, of course he needed it reiterated firmly that he never plays, pushes, hits etc on the stairs but, along with that, his motives, the context and Sam’s part in the proceedings also needed to be considered. It is this wider picture that seems to evade Ethan so much of the time. 

Afterwards, Ethan was sorry and gutted and disappointed with himself. But what use are these emotions after the event? I suspect the next time something angers Ethan disproportionately we’ll be travelling down the same road. 

That said, the article that’s linked to from the Different-Together Facebook page today (https://www.facebook.com/different.together) made me stop and think. Not so much about vaccinations (which is the topic of the piece) but about the way I approach Ethan’s Aspergers:

‘Having an autism spectrum disorder in an ableist world means that you’re constantly exposed to cruel irony. Most frequently, this comes in the form of neurotypical (i.e. non-autistic) people who tell you, incorrectly, that you can’t or don’t feel empathy like them, and then stubbornly refuse to care about your feelings when they claim that you’re lost, that you’re a burden, and that your life is a constant source of misery for you and everyone who loves you.’ Sarah Kurchak

I know I’m totally guilty of this – in this very incident with Oliver I told Ethan how miserable he makes me, how hard it is to bring up children with him, how the kids will grow up to hate him if he didn’t change his ways. I frequently talk to him as the person with the issues who needs to change, driven by the desire of me and our kids (mostly me) to want a husband and dad who fits our mould. I rarely think about his feelings or attempt to adapt myself to fit his way of working. Of course, he needs to tone down his over-reaction to the kids’ bad behaviour and learn to manage his anger – he knows that. But in what ways do I need to try and understand him better and adapt my expectations or even habits, to accommodate some of his ways which aren’t better or worse than mine – just different?

Monday, 2 February 2015

AS and NT living: the volcano erupts


A toxic series of events conspired this week to result in a huge explosion (mine). I shouted, cried, told Ethan I didn’t love him and didn’t want to be married to him anymore, and made him sleep on the sofa. Today, with the benefit of time, my period having started (hormones were partly to blame) and Ethan having been honest with me for the first time in months and having tried really hard since then to be a better husband, things feel calm – even hopeful – again. I know that it won’t last, that Ethan’s goodwill and extra effort will wane, that my intolerance will build up again, that we’ll both slip back into taking each other for granted and pleasing ourselves. But I’m encouraged by the fact that Ethan does care enough to keep on trying to give me what I need, that bust-ups for us don’t mean break-ups and that he, actually, is tolerant of me with my all my intensity, dramatic claims, hurtful words and emotional outbursts. I think Ethan finds me as hard to live with at times as I find him – we’re just so different.

Last week started badly when I went to collect the old dear that I take to a coffee morning on a Monday only for her to tell me bluntly,“I saw Ethan walking home with the kids last week. He looked miserable. What was wrong with him? Oooh, he had a face like thunder.” I replied, resignedly,“That’s just how he looks. That’s how his face is in relaxed mode, when he’s not forcing himself to smile.”
It’s true. Ethan’s natural look is one of irritation. The fact has bothered me ever since my dad observed, a little pointedly, that some people’s natural facial expressions are pleasant and content and happy-looking, even if they’re not smiling; whereas other poor souls seem blighted with a face that constantly looks angry and at odds with the world. Ethan has this second kind of face. I know it. But it’s not nice to have people notice and comment on it first thing on a Monday morning. 

On Tuesday (day one of two days off that he had) he said, surprising and delighting me in equal measure that he was going to go and help a friend to fix his floor. I hung around for the first hour or so after the kids had gone to school – no sign of Ethan leaving the house. He got sidetracked by the burglar alarm playing up and got snappy if I suggested that he should maybe leave that for later and get to his friend’s house. When I left for work, he assured me that he was about to leave to go and help his friend. Twenty minutes later when I had to pop back unexpectedly I opened the front door to the sound of the TV blasting out and the front room shutters down. I was more sad and frustrated than anything else – that he’d lied to me to get me off his back and that he’d chosen to watch (yet more) TV rather than be with a real person in real life building up a friendship. I tried to let it go but couldn’t stop myself – I phoned him up to tell him what I thought about his decision. He said sorry, and I hoped that might mean he’d re-thought his decision. But, an hour later when I drove past the house again, the car was still in the drive and the front room shutters still firmly closed.

Thirdly, on Thursday evening, we were all set to have a cosy evening together in front of the fire, me still feeling pretty deflated by him, when he lost it - suddenly, totally and utterly - over me putting Sam’s shoes on top of the log burner to dry out. “What do you think you’re doing?” he bawled at me. “Don’t ever do that again. Are you stupid?” etc, etc. Even omitting the fact that I was only going to put them on there for a few minutes and was going to be around to make sure nothing untoward happened, it was a horrible way to speak to me. Really, really aggressive (I can’t accurately reflect the volume and disdainful way the words were hurled out here). He finished his tirade, which had taken place in front of the children, by saying “And I’m not going to apologise. You deserved that.” As if I’d just been giving a good thrashing that would, in the long-term, do me good. I was crushed. And angry. And just utterly fed up with putting up with him. I helped get the kids to bed then kept out of his way. Then decided I couldn’t not respond so stormed into the living room and told him, frankly, what an ass he was and never, ever to talk to me like that again. I told him he made me miserable and ended my tirade in tears. I went up to the bedroom to cry, imagining that what I’d said was enough for him to follow and apologise. He stayed downstairs, ate his tea and watched a programme about traffic police. 

I was totally gutted – lonely, sorry for myself, angry, disappointed. And slightly crazy with hormones. I couldn’t leave it. I went downstairs and had another huge go at him. I really didn’t hold back and said some awful things about the kind of person he was and how I should never have married him, etc, etc. In his defence, he genuinely didn’t realise I was that upset or that I’d been crying (impossible for a NT to believe, but I’ve been with him long enough and read enough books to know this is true). Things were only made worse when I went to the freezer for ice-cream only to discover that he’d eaten the entire tub of in one sitting before I’d even got a look in. I know it doesn’t seem like an earth-shattering discovery but it’s the selfishness behind the action – that he didn’t give a single thought to me and that I might want some, whilst he was scoffing the lot. Or, worse, that he did but scoffed it anyway. It didn’t help that he had done exactly the same, with exactly the same ice-cream (Ben and Jerry’s peanut butter cup for anyone that’s interested) a few weeks before and I’d had a go at him about it then. 

He spent the night on the sofa and I spent the night thinking about leaving him. 

The thing is that the almighty row, the awful things I said and the fact he actually got how miserable he was making me – resulted in things changing. First of all, he apologised – not just for that night but for the last few weeks when he’s been far from easy to live with. Secondly, he was honest with me about how down and lonely he’s been feeling and how hard it’s been for him to force himself to do anything other than work (which in itself, is a hugely social, hugely exhausting thing for Ethan). And thirdly, he’s tried so hard since – to do more at home, to talk to me about how I am and about how he is, and he spent the whole weekend with other people: out on Friday night prompted by me, and helping the guy he should have helped earlier in the week all day on Saturday. For my part, I’ve gone back to reading more about AS, which really helped me see Ethan’s actions from an AS, rather than my NT perspective. And which helped me to separate his AS-induced actions from the person he is underneath the frustrations of his AS. The interview with Tony Attwood (http://www.different-together.co.uk/frequently-asked-questions) is a great place to start...

And so we’re still together – and in a far better place than we were last week. Perhaps we needed a huge fall-out like that to clear the clutter and start again. What gives me strength is that, whatever his shortfalls, Ethan will keep trying. He stays committed and loyal to me however vicious I get in my attacks (because I do), he always says sorry (although it sometimes takes a while) and he keeps trying to do better.
I know not everyone with an AS spouse is so fortunate.

Thursday, 29 January 2015

Aspergers, miscommunication and being Different Together

Unbelievable! After a week of stressing and hours spent looking for my car/house keys and not wanting to tell Ethan because of how he would react - I finally 'fessed up on Tuesday night. Only to discover that he'd had them all along.

Apparently he told me that he was taking one set away to avoid the chance of them being lost. Really don't remember that. He says I was walking in the opposite direction at the time and doing something with the kids....well there you go then. It didn't occur to him to wait until a calmer time when I might actually be able to take in what he was telling me! Anyway, all's well that ends well I suppose, although could have done without the week of stress. It did give the opportunity to have a discussion though about why I'd held back from mentioning it for so long - for fear of how he'd react. I told him that it's very lonely feeling  I can't be open with him about life's little hiccups and frustrations, like lost keys, because of how stressed and annoyed he'll get. Told him that, when things go wrong, as they inevitably will, I need to know he's not going to make things worse by obsessing over it and spreading an air of tension and gloom over us all. He promised to try harder not to over-react and get angry the next time something annoying happens. We'll see...

In the meantime, I need to tell you, dear readers who have stuck with me on this journey we all travel, that this blog will be changing.

I'm linking in with the absolutely fantastic website and support network - Different Together. For any of you who haven't discovered it yet, visit www.different-together.co.uk  The website is filled with information on living with an AS partner as well as a forum where you can chat to other people living the same reality. There's also an excellent interview with Tony Attwood on the home page.


In future, I'll still be writing this blog, it'll still chart the everyday challenges and mini triumphs of living as an NT partner of an AS spouse, but I'll also be pulling in news and content from the Different Together website and Facebook page and keeping people up-to-date with developments for the Different Together conference that looks likely to take place in May 2016. And the blog will look a bit different too and will probably change its name. But rest assured - it'll still be Ethan and I muddling through!

Monday, 26 January 2015

Lost car keys and aspergerisation

I’ve lost my car keys. I keep hoping they’ll turn up – when I’m not actively looking for them (because I’ve already looked everywhere I can think of) - but it’s been two weeks and they haven’t appeared yet.

It’s a relief to be able to write it down – to tell you. Keeping niggling worries to yourself makes them worse. But I can’t tell Ethan. He’ll hit the roof. And we’ve only just recovered from horrible rows and resentment last week over an £18,000 BMW Ethan wanted to buy (yes – really, never mind that we’re overdrawn and getting more so each month, in debt on our credit card and have all our kids birthdays and my 40th in the next few months...oh, and that we can’t afford to go on holiday this year. Ethan couldn’t seem to link any of this to the fact that he wanted a BMW. He seemed reluctant, or unable, to let his desire for a BMW be influenced by the money we have (or don’t have) as a family). Anyway, we’ve just about managed to find a compromise and the tension and hopelessness that has hung over us for the last week has gone. I really don’t want to start a whole new thing with the loss of my car keys (my house keys are on the same key ring).

It’s at times like these that I mourn the fact I don’t have a husband that I can share the whole of life with. I’d love to be married to someone who I could feel confident telling I’ve lost my car/house keys, knowing that he would rib me a bit but that, overall, he’d roll with it as one of the little yet constant annoyances in life, we’d take appropriate  action and get over it. But with Ethan, I know it will lead to him being totally stressed, aggressive and frustrated with me for not putting the key in the ‘key place’ that he’s created and that the frustration and irritation will linger for days, possibly weeks.

Keeping things from him (we’ve got one of Sam’s seven-year-old friends coming for a sleepover on Friday and I’ve not plucked up the courage to tell him that yet) is one of the ways that I feel I’ve been aspergerised through living with Ethan for so long. My habits, tendencies, outlook even have been tempered by how he reacts to things. Take a couple of weeks ago when we had friends over. They’d arrived at 2pm to go for a walk and then we’d invited them back for drinks and nibbles. Both of us expected that our guests would leave by about tea-time. When at 10pm that evening they still hadn’t left, I could sense Ethan getting stressed, drying up, extracting himself from conversation (fair enough – he’d been making the effort for the last 8 hours. He had pretty much run a social marathon and needed to rest). He started conspicuously looking at the clock, he’d already put our youngest child to bed as a kind of almighty hint (unfortunately our guests had drank too much and failed to pick up on it!), he’d tidied up around us all and sighed a few times. I felt myself getting more and more stressed too – because I was worried about what he might do/say next, because I knew how desperately he needed them to leave now and partly, although it’s hard to admit it, because although I used to love drinking and chatting into the wee hours, a combination of young kids and being married to Ethan has changed me. I find that, almost by proxy, I too want my social exchanges these days to fit into a specific time-scale with a start and end point and to not go on too long. I like impulsive meet-ups or long conversations or parties that run on less and less. And then I feel frustrated with myself for feeling this way instead of just relaxing and enjoying myself. Perhaps this would have happened to me anyway as I got older and had more responsibilities and life got busier – but I think being married to Ethan and always conscious of how long he can keep going until he hits burn-out or says something rude and we need to get him out of there, has made me far less relaxed and more intolerant too.

Well, no-one’s broken into our house or stolen our car yet – perhaps I should just keep quiet about the keys and hope Ethan never notices...