Two very different social events with my AuDHD husband = Two very different experiences

On Wednesday, Ethan and I met two friends for a pub quiz.

When I say friends, I mean the wife is my friend and the husband just about manages to fill an evening finding things to chat to Ethan about. 

It's pretty much replicated across all of the people we're 'friends' with.

These days, Ethan has come a long way from the silent, overwhelmed and internally angry man he once was on nights out - the revellery and easy-going nature of everyone else heightening the sense of frustration and disappointment in himself, which showed itself as sullenness and standoffishness. 

But what Wednesday confirmed to me, that I'd kind of forgotten, is that pub quizzes are never going to make successful nights out for Ethan. 

For a start, it was a warm night, and we were in a noisy, sticky pub huddled around a table among lots of other groups also huddled around tables. 

That's never a good start.

To make matters worse, we'd ordered tapas. Whoever came up with the idea of turning the basic human - and largely independent - activity of eating into a shared 'experience', did not have autistics in mind. 

That old feeling of slight panic mixed with embarrassment that used to be a regular fixture on a night out with Ethan in tow, returned as he, literally, made a meal of digging into the pancetta fries, one large forkful after another, giving no-one else a chance.     

Pub quizzes for dummies

Ethan hadn't contributed much to conversation - it's hard for his autistic brain to focus on two things at once and obviously eating won out. So when the question paper appeared, I breathed a sigh of relief thinking that now, at least, there'd be a focal point to conversation that Ethan could join in on. 

I was wrong. 

It was impossible for Ethan's brain to dip in and out of discussing the question paper and normal conversation, something everyone else was doing with ease. With that demand, on top of the noise, the people and the heat, his brain and body were on sensory overload.  

"On top of that, as the questions built, he felt increasingly stupid."

On top of that, as the questions built, he felt increasingly stupid. Not because he is, but because he can't ever remember anyone's names or the names of songs/bands and has no interest in popular culture. Also, however much he might like, say, a film or an artist, his ADHD brain cannot store and recall information (something, I've discovered through the pain of GCSEs, he's passed on to both our boys).

Towards the end of the evening, he'd pretty much given up. And that old silent, simmering separation returned. I stepped into the breach, socialising for both of us, but we both had a pretty miserable evening and walked home silently a few paces out of step with each other.

I was left feeling the way I haven't felt for years - that I'm married to someone I'm unable to have a normal social life with and that I'm just going to have to do everything without him in future, feeding the ever-increasing rift between us.

Image is AI generated

Thank f*** it's Friday

Fast forward to Friday night, and we'd been invited to a friend's for dinner - one of only a couple of friends that we actually know through Ethan.

Key differences to Wednesday night were that:

• There were just four of us, and we were in a quiet house - no competing ambient noise, other conversations going on around us, or multiple people in our conversation to try to navigate around. 

• We started the evening outside in the garden - peaceful, plenty of air and space, and a cool breeze.

• There were no demands - from a quiz or otherwise - that made Ethan feel inferior, different or 'not enough'.

• We all had our own dinner, on our own plates, for only ourselves to eat!

We had a fantastic evening. Conversation was balanced - covering topics Ethan felt able to contribute to (films featured quite a bit, as well as the superiority of IMAX). And we walked home laughing, still chatting and holding hands.

"We walked home laughing, still chatting and holding hands"

 

What, when, who and how

It's reminded me that, while Ethan's made huge progress socially and huge adaptations and efforts to fit into my world, there are adaptions and compromises that I have to make for him too. 

Certain events are always going to remain impenetrable for him - and trying to break through them is only going to break him, and us.

Just like I could never rewire a house or build a computer, Ethan is never going to thrive at a pub quiz. 

That doesn't mean we can never be sociable together with others, just that we need to choose what we do - when and how. 

And there might be times when it's better for everyone that I just go along to something on my own. 

And that's OK.     

Yay! It’s the holidays… (with a family of neurodivergents)

My middle child, Sam (ADHD and autism) summed it up best when he disparagingly described a holiday as, ‘…still being with your family, but without any of your stuff’!

The plus side of the long school holidays, when you have neurodivergent (or any) kids, is not having to navigate drop-offs and pick-ups, checking and rechecking school bags, battling over homework or facing the daily crushing comparison (I know I shouldn’t) with all the other happy, well-adjusted, confident, sociable little darlings in the school playground.

The pay-off for all of that, is endless empty days that need to be filled with enforced fun.

Image AI generated

 

Picture the scene…

We’re away for a few days in Llandudno and enthusiasm is waning.

I suggest a game of Kubb on the promenade. Just getting them to agree is quite the undertaking (Sam: ‘people will look at us’, Oliver: ‘effort’) but, ignoring their protests, I set up and the game gets underway.

I’d read and inwardly digested the rules ahead of time – knowing the impossible amounts of patience and processing it would require for us to decipher the rules together. So I begin by explaining that Sam and Oliver start with all six batons.

Ethan (autism and ADHD) picks up three of the batons and walks over to his side of the game.

I take the batons off Ethan and repeat that the boys start with all six batons.

Sam and Oliver take their turn. Oliver throws his baton with (way too much) gusto. It flies down the promenade. Ethan shouts.

To give Sam his due for his reason for not wanting to play the game, he’s right – people are looking at us.

On Sam and Oliver’s next turn, to soften the blow for Ethan, I pick up the batons as Oliver throws – knowing Oliver won’t be able to help hurling them (he has no fine motor skills), and Ethan won’t be able to help overreacting (he has no fine tolerance skills).

A few yards away, a woman has begun to film our happy family game on her phone.

 

Knock yourself out

Just as I bend down to pick up the most recent baton Oliver has lobbed, he throws another. It whacks me, full force, straight in the jaw.

Ethan shouts (louder this time). People have moved beyond ‘looking’ to staring. The woman stops filming.

Oliver repeats and repeats and repeats and repeats his thought process as to why he chucked the baton even though he knew my head was there. If any of us try to interject or even move during any of these four retellings, he has to start again, from the beginning. I don’t know whether the need to repeatedly repeat, with no interruptions and all of our undivided attention, is part of Oliver’s OCD, autism, ADHD or all three but, part way through the third retelling as my jaw throbs, my patience snaps.

“For god’s sake Oliver, shut up and just say sorry,” I yell. “From now on you’re taking a bloody ADHD tablet every day and I don’t care about the side effects.” I instantly feel evil.

More stares. Some smirks.

We play on. We’re on ‘holiday’. The boys have been forcibly removed from their screens and I’m determined we will make memories (and, to be fair, we did).

The boys are winning. Ethan is getting irritated. Not being able to cope with losing is a trait often linked with autism and, just because you’re 52 doesn’t mean you grow out of it.

 

Whose rule is it anyway?

He starts arguing with me about the rules: stating it’s impossible for us to win (it isn’t). I try to calmly explain why it isn’t impossible. Ethan isn’t hearing what I’m saying because he has his own thought process which cannot flex to what I am saying. I know this. But I’m human: I’ve read the rules, he hasn’t and, while he’s arguing and stating, as fact, observations that are incorrect, the boys are fast losing interest and the dog (who has been tied to a bench a couple of metres away) is starting to howl – so I’m frustrated. I shout (I’m now shouting almost as much as Ethan). And use the F word.

At which point, Sam (bless him) with all the patience and wisdom of a world-weary 15 year old (and also possibly because people are staring again), steps in and calmly explains to Ethan how he and I could still, theoretically, knock all our blocks down and win (which we all know isn’t going to happen).

But Ethan’s mind set will not shift (or, at least, he won’t admit to being wrong, which is quite another thing). I tell him to move on and stop spoiling it for everyone (who am I kidding – this game is spoilt beyond redemption). The dog continues with his incessant howling and we all play on. We are now all playing Kubb with a huge ‘Kubb on’ (sorry) and collectively just want the ordeal to end.

Thankfully, a couple more rounds and the boys have won.

The stress of the game has almost been worth it for the relief of it being over. Until Sam discovers that he’s lost his ear pods somewhere along the promenade, and the next drama begins…

Minor but irritating Asperger traits #1: Magic tricks

For the last few weeks we’ve taken to having ‘Sunday night family time’ watching Britain’s Next Great Magician on TV. Everyone’s a winner. The kids love it, it’s actually, for the most part, quite entertaining and it requires far less effort at the end of a busy week than reading a bedtime story.

However, I do have one complaint: Ethan.

He either has to smugly claim that he knows how each trick is done (and thus take the magic out of magic trick for us all) or, if there’s a trick he can’t explain, he’ll rewind the programme, slow it right down (the wonders of modern technology for a person with Asperger’s) and carry out a detailed study. Needless to say, this is really annoying for everyone else watching the programme. I also find it sad (and infuriating) that he needs to know how everything works – fiercely practical always. Where’s the space for dreaming, wonder, make-believe? But anything he can’t explain, pin down to science and reason, seems to bother him. It’s part of him feeling in control of his world, I guess.

I think that being able to explain a magic trick, if only to himself, makes him feel good, self-assured, right. And being right boosts his self-esteem when so often in life and social situations, he is wrong.

The rest of us, weirdly, watch a magic show for the magic. So, this week, I’m keeping tight hold of the remote control!

Aspergers and the imbalance of responsibility

Sometimes I wish I’d listened to those persistent (sometimes raging) doubts that had told me I was making a huge mistake by marrying Ethan.

He is so difficult to live with at times, totally dysfunctional to have a grown-up relationship with and almost impossible to bring up kids with. It leaves me wondering what was left to draw me to him. But I know really – it was the security, the stability and the flattery of being utterly the centre of his world. I was his special interest for as long as it took to get that ring on my finger.

It’s not that he’s stopped trying now, or turned into a tyrant. I know he does his best – most of the time. It’s just that his best is woefully inadequate and it’s so frustrating that his best never gets any better.

I’ve learnt that, when I’m working and he’s in charge of the kids, telling him over the phone what he needs to do doesn’t cut it. He’s forgotten what I’ve said by the time I get off the phone. So these days I text him the information. Today, in the midst of a really hectic schedule, I took the time to text him the information for this afternoon (‘I’ll bring dinner home, could you peel some potatoes, Sam needs to practice his spellings, Oliver’s going to his friend’s house so don’t worry about him and Ava needs picking up from church at 5pm’). I also emailed him Sam’s spellings to practice.

5pm as I leave work I phone Ethan. This is our conversation:

Me: “Could you put the oven on so it’s warming up?’

Ethan: “Oven? Why am I putting the oven…er (I can hear him scrabbling about in his conscious mind trying desperately to remember what he realises he’s supposed to know)…What’s going in the oven?”

Me (exasperated): “It doesn’t matter what’s going in the oven, just that you turn it on please so it’s warming up….(silence)…for the tea…that I’m bringing home.”

Ethan: Right…erm. OK…

Me: “What’s the problem? Just put it on. And then go and get Ava. You do know it’s after 5pm?”

Ethan: “OK (pause)…Where’s Ava?”

By the time I got home, I was already wound up. So the half-cooked pasta, chopped courgette and pepper and cold oven when I got home was enough to break me. I couldn’t even appreciate the fact that he’d made a start on dinner BECAUSE IT WAS THE WRONG DINNER. I HAD THE B*****Y DINNER IN MY BAG!

Me: “You did at least practice Sam’s spellings with him, did you?”

Ethan (pleased with himself) “Yes, I did.”

I felt slightly calmed. It was only when I was putting Sam to bed later that night and he told me that Ethan had grabbed his head to make him look at the spellings that my heart lurched.  Up to that time Ethan had just been annoying and unreliable. But the frequency with which he loses his temper with the kids over normal childhood behaviour (“he wasn’t doing what I said”) genuinely bothers me. As long as I don’t ask Ethan to do anything in the house or with the kids while he’s in charge, there’s no harm done. But there’s also no jobs done, meaning they’re all waiting for me when I get home. And who wants that?

Home again, home again jiggity-jig

Just back from holiday with Ethan and the kids and need another holiday to recover!

Eleven days in a (very small) self-catering caravan on a Spanish tourist site with an Aspergic husband and son (along with our neuro-typical kids) was rather like an endurance test - with a few idyllic moments and amazing views thrown in to keep us all going!

The stress started the moment our sandalled feet hit the tarmac of the airport. Airports seem to hold a special terror for Ethan. Even with two hours to go until boarding, Ethan got jittery with anxiety – eyes wide and intense, voice raised, fingers twitching. He marched us through check-in and security, leading from the front at a rate of knots, dragged children and bags banging in to other passengers on the way. No time for Ava and I to indulge in airport perks such as trying on perfume samples at duty free…except that we did, because I refuse to (and refuse to let my kids be) ruled by Aspergers, and we were on holiday for goodness sake.

Our frivolous waste of precious minutes was met with silent building pressure in Ethan leading to an angry look and an even faster pace to the boarding gate, where we sat and waited for fifteen minutes for the shuttle bus to take us to our plane. I couldn’t help pointing out that ‘I’d told him so.’

His reconciliatory comment on the plane that my perfume ‘smelt nice’ did little to appease my resentment. I was already bracing myself for the journey home….

That said, Ethan’s intensive focus, his planning and ordering of documents into carefully-labelled envelopes, his pre-booking of the taxi to take us home from the airport, does get us all efficiently and easily from A to B. It just somehow also saps all the joy out of the adventure. 

Are you receiving me?!

Anyone else out there in neuro-diverse partnerships experience their NT partner only giving half the information required?! My husband does it all the time! Frustratingly (or perhaps as a sub-conscious means of survival!) my brain never retains the incidents, except for this morning's which is still fresh in my memory...
So, Ethan came into our room, out of no-where while I was getting dressed on holiday and said, 'Do you want to go for a walk by yourself today? I'll look after the kids, I don't mind."
Seemed a bit of a random suggestion for a family holiday so I replied, "erm, no thanks. I'll stay with all of you..."
To which, Ethan, seeming a bit put out, replied, "oh right, ok."
It wasn't until later when I realised the date & mentioned to Ethan that it was the seventh anniversary of my mum dying that he said, genuinely confused, "yeah, I know. I've already spoken to you about it when I offered for you to go for a walk."
The penny dropped...but when I mentioned that he hadn't mentioned the context of it being the anniversary of mum dying he was convinced he had communicated that information. What goes on in his head and what he thinks he's said compared to what he does say seem to be poles apart sometimes!

Managing the unmanageable

Going on holiday in the morning.

Packing has been an interesting meeting of the minds.

Ethan started preparing small 30 ml-sized plastic bottles a couple of weeks ago, along with sticky labels for shampoo, shower gel and conditioner. He also ordered two new suitcases and a weight checker.

Ava texted me when I was out last night pleading with me to come home because Ethan wouldn’t let her take her cleanser (not even in cargo luggage) ‘because it was too big’. He is excelling himself in anal retentiveness and old-woman fussing. Initially it drove me mad. But, as time has gone on, I’ve realised there’s no point fighting it. He is who he is. So I’ve let him do his little labelled bottles, his master packing list and his bag weighing and I’ve sneaked in Ava’s cleanser along with some other non-conforming moisturisers and face-washes. Because I’ve realised that, for Ethan, regimenting the packing, making everything neat and uniform, is his way of controlling the uncontrollable. Because, although the holiday is something he’s looking forward to, it’s also something unfamiliar, out of the ordinary, unchartered. And he needs to be able to compartmentalise it into manageable chunks – quite literally.

And, actually, he was right to buy the extra suitcases. We’d never have got everything into the one big and one small one we had.

Perhaps we do make a good team after all. 

Aspergers, relationships and Mental Health Awareness Week

Am particularly conscious, during this Mental Health Awareness week which focuses on relationships, of how mental health affects not just the person with Asperger’s but the whole family around him or her.

This weekend was the perfect example of how Asperger’s affects our family. A toy wooden boat fell on Ethan’s head as he was getting something out of Sam’s wardrobe on Saturday (a toy wooden boat that Ethan himself had put there, I hasten to add). Ethan’s anger immediately took hold. He stormed downstairs with the wooden boat where he proceeded to smash it into pieces. Sam cried, I shouted, Ethan fumed.

The fallout lasted all day. I was so angry with my husband. I was disappointed for my son. I had to spend the whole day with Ethan and go to a party with him that night feeling rubbish and hurt and worn out with him. Having spent the first ten years of our marriage sulking over events like this, I have now learnt it’s a reaction that is completely counter-productive. I tried to talk with Ethan about what had happened. But his refusal to accept any blame (it’s the boat’s fault, it’s the wardrobe’s fault, he never played with it anyway, it had some parts missing (it didn’t)) made me even more depressed and frustrated.

Eventually, through my perseverance and refusal to let him walk away from what he’d done – he admitted liability. He accepted that he’d lost his temper, that he’d acted badly, that he needed to say sorry to Sam. But it took all day to get to that point and I was still left feeling resentful that I’d had to work hard on him all day for him to reach that point, and angry and disillusioned that it had happened at all.

I’m reminded of the importance of the NT partners of AS individuals to look after their own fragile mental health. To ensure they have time for them and, crucially, time with other NT friends. So much of my life with AS is hidden as Ethan doesn’t want people to know about his condition. I understand that, and respect it, but it makes being able to off-load difficult - if not impossible. Having one or two close friends that your partner agrees can know about his/her AS and be your sanity (although often, unless they have experienced living with someone with AS themselves, it can be hard for them to really get it) can be a lifeline, as can forums like those on Different Together. And, of course, writing a blog can help too :).

So, this Mental Health Awareness Week, thanks for being my sounding board, my confidante, my listening ear! And do protect your own mental health however you need to – we’ve got a lot we need to be strong for.

Blame the Aspergers

There are times when I hope my husband’s more frustrating traits are down to Asperger’s Syndrome and not anything else.

…like when I came downstairs this morning to find that our new puppy had pooed all over her bed, and both her blankets. The poo had gone inside the grooves of her cage and smeared onto the wall behind. I was alerted to this fact by my daughter, Ava, proclaiming that Maggie had ‘pooed everywhere’ whilst letting her out of her cage to run her pooey paws all over the house.

What has any of this to do with Ethan and his Asperger’s, you may ask?

It was Ethan that put the puppy to bed last night: without the waterproof mat that I’d placed on top of the cage ready to cover her bed. Instead he’d shoved both her newly-washed blankets inside her bed ready to be smeared with excrement so that we wouldn’t be able to use them the next day.

The kids ended up being late for school, I had to deal with far more poo before breakfast than anyone should have to face and Ethan whizzed himself off to work.

But it’s not just the dog’s bed missing its most important component, it’s the many other omissions, forgettings and just plain vacant moments that make me wonder whether anything at all is going on inside Ethan’s head. And that’s when I hope that it is Asperger’s to blame – rather than my husband just being thick.

The same day (yesterday), I was at work and took the time to text him an itinerary of what our various kids needed to be doing when. By the time I got home at 6.30pm, Ava and her friend should have been at youth club (itinerary instruction #1 ‘Ava and Jessie need to set off at 5.45pm for youth group to be there for 6pm’) and Sam and Ethan should have had their tea and be ready for the Cubs bike ride that was starting at 7pm. Instead what I was greeted with when I got home was Ava and her friend happily playing with the dog half an hour after their youth group had started and Sam and Oliver only just sitting down to their tea. I managed to get the girls out (late) to their club and Ethan and Sam to the bike ride – but they only had a drink and snack because I remembered the water bottles and biscuits that Ethan had forgotten and left by the front door. And Ethan came home freezing because he just walked out of the house in what he was wearing (which wasn’t much).

I asked what was happening (or not happening) in Ethan’s brain when he put the dog to bed and got ready to leave for the bike-ride last night and this is what I discovered:

<what I would be thinking>: ‘Right, I need to put Maggie to bed so she needs her bed in her cage. I’ll take the blanket out so it doesn’t get wee or poo on. And I need to put a mat in to soak up any wee or catch any poo. There we go, ah – isn’t she cute? Here, have a stroke.’

<what Ethan thought> ‘Right, I need to put Maggie to bed. So, grab the bed, put it in the cage, put her in cage.’

<what I would be thinking> ‘Right, I need to get to this bike ride. What do I need? I’ve got bikes and helmets, I need the drink and a snack. Do I need keys – no Laura will be in. Money? No. Jacket? It’s going to get colder, I’ll grab a hoodie.’

<what Ethan thought> ‘Right, I need to go.’

Maybe it’s just a man thing – but it can’t be a man-with-kids thing. With three kids in tow he just needs to think things through a bit more.

I’m going away this weekend and Ethan is responsible not only for looking after our kids for the weekend but also for getting Oliver to football, Ava to dancing, Oliver (later) to a party and Sam to his gym class! Maybe, with me totally out of the picture, he’ll rise to the challenge. And I need to keep giving him the opportunities (or, rather, forcing him to engage his brain) because the alternative is that I do everything all the time, which just leads to me getting resentful and bitter (even if it does mean everything gets done properly)!

Although I can’t rant too much – Ethan’s just whizzed the swimming kit down to school for Sam that I forgot to hand in this morning!

Asperger's and making the most of our differences

I’m reading The Rosie Project at the moment (only on chapter 3 so far but I highly recommend it – it’s brilliant if you want to see the world (and the rest of us) from the perspective of someone with Asperger’s and be able to laugh about our differences – sometimes that’s our best weapon!) As I say, I’m only on chapter 3 but already it’s done a lot in my mind to redress the balance between us (NTs) being right and those with AS being wrong – we’re different: we see things differently, we react to things differently (if we react at all) and therein lies the challenge. We want our AS partners to connect with us, to see things our way. But, actually, by embracing our differences and working as a team to each other’s strengths and weaknesses, could we be the perfect partnership?

I don’t know. It’s a question I’m asking myself too. And I know there are all kinds of hurdles and misunderstandings and frustrations to work through. I also know that, sometimes, like when your AS partner ignores a question or someone’s greeting because he’s zoned out, that Asperger’s is at odds with the world and that, if an aspie wants to build relationships and function well in society, they need to adapt – even change, to a certain extent.

But, at least sometimes, can we combine our very different traits to get the best out of a situation? Take The Rosie Project.

It’s such a breath of fresh air after serious, factual, self-help books that I read some of it out to Ethan – the best part of a chapter. And somewhere, in the middle of the chapter, was a reference to a hot January evening.

I recall briefly (we’re talking a split second) wondering about this as I read that line and surmising that the author must be being sarcastic (as evenings clearly are not hot in January). I, even more briefly, recognised that the sarcasm didn’t really work and was out of character for the narrator of the book but didn’t dwell on it and was onto the next sentence without a second’s hesitation. I had to stop a couple of times during my reading to inform Ethan that ‘this was a funny bit and did he ‘get it’?’ since his face showed no understanding, connection or hint of a smile. He, somewhat exasperatedly, confirmed that ‘yes he did get it and yes it was funny and he was enjoying it, could I please carry on.’ When I reached the end of the section Ethan’s response was: 

‘Is it set in Australia?’

‘Yes,’ I replied, bemused. ‘How do you know that?’ (‘and why is that insignificant fact the one thing you’ve decided to pick up on?’ I thought but didn’t say)

‘Because he says about it being hot in January.’

‘Ohhhhhh,’ I said, the penny dropping, ‘I knew it was set in Australia and still didn’t realise that’s why it would be hot in January. I thought he was just being sarcastic.’

Ethan looked at me scathingly, ‘No. Why would he be?’

Why indeed? The bloke’s got AS for goodness sake! But maybe other details that wouldn’t have made sense to me through the course of the novel now will, thanks to Ethan and his penchant for seemingly unimportant details. We make a good team!

Aspergers Christmas spoiler #3

It's Christmas Day and he's opening the present you’ve bought him. The kids are excited because they’ve ‘helped’ wrap it. He opens it, looks at it, pauses a moment and says…

“Oh dear.”

You know he has Aspergers - that he struggles to understand even his own emotions, that present-giving with all eyes on him waiting for a reaction is particularly pressured for him. But actually, right at that moment, you’re just p****d off. Fed up with having a husband who deflates everyone around him, fed up with having to pander to him and make excuses for him, fed up with him always being miserable. So, even though it’s Christmas Day and you’re in the middle of present-opening and all the kids are there and excited and you don’t want to spoil the day for them, you find you just can’t hold it back.

“What is wrong with you?” you say. “I know you’ve got Asperger's but there’s no excuse for being just bloody rude."

He looks awkward and does a kind of smirk, because he doesn’t know what else to do, and that makes you even madder.

“It’s not funny,” you shout at him, surrounded by wrapping paper and a now crying daughter who’s begging you to stop arguing. “It’s just horrible and rude and it’s now spoiled things for everyone. Why would you say that? Even if it’s not something you want. You must surely know that’s not the right thing to say when you open a present that somebody has brought for you?”

At which point your husband tells you to stop being so sensitive and walks out of the room. And you survey the scene before you of two suddenly quiet boys who’ve developed an intense interest in the game of wildlife scrabble that, two minutes earlier they had cast aside disdainfully as it wasn’t Lego or something with a screen and your daughter who is wiping her tears on her sleeve and you realise that, for their sake as well as your own, you have to come back from this. That you can’t let it write-off Christmas Day. That, actually, for a million different reasons, including the laptop, No.7 toiletry set, pestle and mortar and mini gifts from the kids that he’s bought, wrapped and got the kids to write the labels on for you and the many Christmas social gatherings that he’s come to and forced himself to perform at, you know he loves you and doesn’t mean to mess up so badly. So you kiss the kids, tell them sorry and that it’s going to be fine and you go and find your husband. Although you’re still mad and feel he’s the one that should be apologising, you apologise for your part in the proceedings; for having a go at him on Christmas Day in front of the kids. You tell him that you understand that his Asperger’s makes it difficult for him to know what to say but, of all the things he could have picked to say “Oh dear” was probably the worst. And the steam is taken out of the situation. He apologises too. Says he knows it was a stupid thing to say but that he just couldn’t think of anything else. He admits that he already knew about the present because Ava had given it away two days ago – so he was aware he had to act surprised even though he wasn’t and, it seems, this was too much for his mind to process, along with the pressure of everyone watching him and him being aware there was a kind of protocol that he should be following. He doesn’t know why it was that ‘Oh dear’ came out but you suspect it was an expression of how he felt under the pressure of the situation. After all, Aspies find it hard to edit themselves – what they’re feeling or thinking is generally what comes out while they’re busy trying to think of what they should really be saying!

Christmas Day was saved. Ethan came back into the room, we carried on opening presents. We even kissed in front of the kids to show we weren’t mad with each other. I actually ended up feeling a bit sorry for him – that, even in the relative comfort of his own home with just his family around, he still felt panicked and stressed when he had to play a part that he wasn’t sure of. Is there anywhere, anytime, anyplace that this guy can relax?  Oh yes, that’ll be in the office in the dark playing computer games…until I come and have a go at him for shutting himself in there instead of being with his family. Hmmmm….

It ain’t easy! All we can do is keep picking ourselves up and trying again. 

I wish all of you, AS or NT and despite the surface-level complications, highs and lows, tears and triumphs, a foundation of happiness, acceptance and peace this new year. 

Christmas - Asperger's style

A new theme to my (rather sporadic) blog posts for the Christmas season inspired by us decorating our tree this weekend: Christmas spoilers and blessings - as experienced when living with a partner with Asperger’s Syndrome.

So, picture the scene, the Christmas tree is up and Ethan comes down from the loft carrying two boxes of tree decorations – collected and made over many years of children’s Christmases. We (my five-year-old, seven-year-old, ten-year-old and I) tear into the boxes, excited to begin this festive family tradition. In our box of decorations we come across tinsel, of course, and baubles – and more baubles…every now and again the continual stream of baubles is made more exciting by the discovery of one of the children’s first Christmas baubles or a ceramic angel with Ava’s name on. But steadily, the box is emptying and something is still missing. The years’ and years’ worth of toilet roll Father Christmases and cardboard angels that are the inevitable and personal finishing touches to any family Christmas tree… the culmination of ten years of children’s Christmases are all gone, save for a single glittery red stocking and a cardboard manger scene that have survived Ethan’s cull.

Unbeknown to any of us, when putting the Christmas tree decorations back in the loft last year, Ethan had taken it upon himself to sort through them and had chucked out ‘the old, tatty-looking decorations’! He was utterly desensitised to the fact that these were his children’s creations, lovingly and excitedly made and tracking their creativity from toddler-hood to present-day. He was thinking purely practically; they’d seen better days so out they went!

I was gutted, obviously and astounded once again by the way his mind works. However, after my emotional reaction fuelled by mulled wine, I don’t think he’ll be doing it again! And the children have already set to work creating new festive delights to adorn our house with!

The blessing, because I feel, particularly at this time of goodwill, that I should counter any whinge with recognition of what I have to be thankful for, is that Ethan has so far risen to the occasion, made the effort, put a (sometimes slightly pained) smile on his face and has been cheerful, sociable and (mostly) upbeat during what has been even for me a sociably-exhausting couple of weeks.

Hoping he’s pacing himself cos we’ve got another three weeks to go before he can slump into the hibernation of January! 

Aspergers and not quite connecting

I heard a talk from someone with Asperger’s Syndrome lately where she mentioned the block that exists between AS and NT (neuro-typical) people: a kind of invisible wall that neither person can penetrate. For the AS person there’s a sense that, however hard they try to interact and impersonate the rules of social engagement they’ll always be just slightly off the mark, left with the sense that they’ve not quite got it right; not quite made the connection. And for the NT on the other side, the feeling that this person that they’re communicating with just isn’t quite getting it; isn’t quite tuned in, is on a different wavelength.

I witnessed this at the weekend. We threw a party on Saturday night (belated bonfire, early Christmas!). Ethan loves getting the house ready for a party – tinkering with mood lighting, organising a system for drinks, selecting a playlist…And, he starts off well – greeting people enthusiastically, offering drinks, asking people questions. But he just can’t keep it going. After a couple of hours he was starting to wilt. By the time we were down to the last few stragglers who didn’t want to leave, mentally, Ethan was gone. I was tired too but, as an NT, I could pretend I wasn’t and give the impression that I was still interested and connected with the conversation. Ethan couldn’t. I saw it as he made his point by tidying up around us and turning the music off as people were still sitting chatting. And when a guy tried to start up a conversation with Ethan by telling him about something funny that had happened that day, there was a very slight delay between him finishing his account and Ethan’s woefully inadequate response of ‘yeah’. Although Ethan was looking at the person speaking, his eyes weren’t focusing on him and even his smile somehow seemed fake. I saw, as clearly as you can see something that’s invisible, the barrier between them.

Mind you, the guy did leave quite promptly after that. Maybe I should hire Ethan out as a service to party hosts wanting to get rid of those last stubborn guests!

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.