My husband’s ‘glass half empty (so protect what’s left)’ branch of autism

It’s been happening for a while now, and I’m not sure whether it’s that I’m more perceptive to it or that more people are aware of it or just that the ‘one in 120’ estimate of autistic people in the world’s population is a vast underestimate.

Probably all of the above.

Whatever the reasons, everywhere I go, I meet people who are autistic, or in the process of being assessed for autism, or seriously questioning whether they might be autistic. And, without me pushing it at all, neurodiversity in some shape or form always comes up in conversation.

I’ve just spent a couple of days in London for work and, without me mentioning it at all, two of the volunteers I ended up sitting with in the pub began speaking to me about their experiences of being autistic. This was followed, as I walked to the train station with a work colleague, by her telling me about her husband whom she suspects to be autistic, followed by me reaching my school-friend’s house and spending the evening talking – among other things – about her daughter who was waiting for an autism and ADHD assessment (and, over the course of my time staying with her, it seemed very likely to me that her son and husband were autistic too).

None of this matters, of course, and I’m glad that I come across as the kind of person who is sympathetic, accepting and open to these conversations. But it brings home to me the huge prevalence of neurodiversity within humanity – to the extent that I question whether it can continue to be termed divergence if – when all the different ‘neurodivergences’ are accounted for – the conservative estimate is that 20% of the population is neurodivergent in some way. Compared to say, the number of people in the world with blue eyes, this is twice as many – and we don’t call people with blue eyes optidivergent. I would argue that neurodivergences aren’t divergences at all, but simply a variation – and a very common one at that – of what it means to be human.

The microcosm of neurodivergent life

Meanwhile, back in my microcosm of neurodivergent life, living with the more challenging aspects of my husband’s autism continues to drive me mad and frequently zap life’s joy.

I’ve been going through some difficult health and family stuff recently and, this week, a friend sent me some flowers out of the blue. When I opened them and the card in front of Ethan, he asked how this friend knew about the stuff I had going on, so I told him I’d mentionied it earlier in the week when she’d messaged me about some concerts nearby that her orchestra was performing in.

Ethan’s reply?

‘Ah right. So she’s obviously trying to manipulate you then.’

WTF?!

Only Ethan could have such an immediately cynical and negative reaction to such a kind, thoughtful gesture.

Later that same evening, I mentioned us all maybe going out for a family walk on Sunday when I returned from my work trip. His reaction to that?

‘It’s going to be torrential rain all day Sunday.’

Again, a lovely, cheery reaction which lifted everyone’s spirits.

My issue wasn’t with the fact rain may well have been forecast to fall (although, when I checked, following Elliot’s gloomy prediction, the forecast said there was only a 50% chance of light rain and not until 2 pm. Ethan’s response to that, ‘50% basically means it’s definitely happening’. What?! That doesn’t even make sense. Also, has there ever been a better example of ‘glass half empty’ psychology? I also know Ethan well enough to know that part of this defiance of logic was his incredibly strong impulse to not ever be able to admit to being wrong). But no, my bigger issue to all of this was that this is what Ethan chose to lead with as his response to us all doing something nice together. I wouldn’t have minded him mentioning the rain, but the day I hear something from him like, ‘I think it might rain on Sunday. If we can’t do the walk, let’s think of something else nice to do instead’ will be the day I crack open the champagne.

As it happens, I’m writing this on Sunday – when we’ve all just got back from a walk – and when not a single drop of rain has fallen on us. But will he learn from that not to always take the most pessimistic, negative view? Sadly, 26 years of marriage has taught me that he won’t. 

Is it an autistic nervous response to do what you like and look after your own?

The other trait in Ethan that drives me mad is his natural propensity to only see himself and his needs (and, as an extension of himself, his family).

Being in the car with Ethan when he’s driving is incredibly stressful. He will not be held up for a moment, frequently cutting people up and beeping at people if he thinks they’re going too slow or if their reaction time to, say, traffic lights changing or another car pulling in to let someone out, takes too long. But any time anyone does anything vaguely similar to him, he’ll be furious – calling the driver an idiot and giving them a death stare.

Today, on the walk, I told our boys to keep the dogs on their leads until we got to the end of the path as there were a couple of dogs often in the back gardens of the houses backing onto that path whom our dog would whip into a frenzy barking and jumping up at them through their fence and, I’d noticed, their dogs had actually broken the fence trying to retaliate.

To which Ethan’s response was, ‘that’s their problem’. The fact it’s a problem that our dog is contributing to and that we can easily rectify that by not allowing our dog to jump up at their fence, seems irrelevant to Ethan. And I know, if things were the other way around, he’d be moaning about the dog owners who let their dogs jump up and bark on his fence rather than keep them on a lead.

It’s such a shame that these, seemingly instinctive responses in Ethan dominate so many of his lovely traits – because, deep down, he is quite a kind, caring person. It’s just very hard to get through the protective, defensive, negative layers above that – layers that seem to have formed from years of self-protection which, in turn, I suspect, formed as a result of too often not being able to keep up with the world and feeling left behind, misunderstood and simply less.

The double edged sword of autistic single-mindedness

A few years ago, in my last job, I worked closely with a woman who made projects difficult.

At the time I worked as a content creator. I wrote the words and came up with the messaging, packaging and direction of campaigns and someone else (this woman) took care of the design – tasked with turning the words into something tangible and visible.

Every single time I worked on a project with this person, there would be stress, accusations that I had miscommunicated and dissatisfied clients.

This never happened with anyone else.

 
Getting to the nub

Quite quickly, I picked up that:

1.   This person found any deviation from or adaption of the product from early discussions incredibly unsettling and would act aggressively and defensively to any suggestion of developing, building on or altering an initial idea. To me, an initial idea being shaped and honed into a final product is the creative process. Ideas develop, take shape and form as you go. To this person, you decide what you’re doing, then you do it, exactly that way, no matter what else happens along the way.

2.   This person missed vital parts of conversation. They would swear blind you’d never told them things that you knew you had. Even when other people had been present to witness that you’d said something, she’d swear she’d never heard you. This didn’t just happen with me – in team meetings where, for instance, one of our team would state where a project tracking spreadsheet was stored and how it should be used, a week later, everyone would be using it except this person who would say no-one had told her anything about it.

3.   People avoided challenging this person, or even gently questioning her, as it would result in disproportionate confrontation and aggression. This meant that I often found myself stuck in the middle of this person and others – who wouldn’t want to confront her directly and would instead give me their feedback to give to her.

During the couple of years I worked with this person, I’d often offload onto Ethan at the end of a stressful day – about all of the above behaviours, which caused real stress for me. And he would sympathise, often tell me what to do about it (of course!) and be angry on my behalf.

But what I realised – also quite quickly – is that Ethan does exactly the same!

The perfect trio of aggression, confrontation and selective hearing

Tonight, we were having a discussion about mobile phones.

Ethan suggested we buy Oliver a new (second-hand) phone for Christmas. I mentioned, just as another possible option, that a friend of ours had taken out a plan for his son where he paid about £18 a month for a phone and SIM and that, after two years, they could either keep the phone or trade it in for a better model and keep paying the £18 a month.

Ethan reacted exactly like my old colleague would have done – aggressive, confrontational and missing key details of what I‘d said.

It’s like he didn’t have the bandwidth in his head for any interpretation other than his own.

That kind of rigid thinking, in both the workplace and in a relationship, can be both a strength and a source of destruction. Which is why, I guess autistic colleagues – and autistic husbands – can be both absolute gems and complete pains in the arse!

But it’s also this kind of single-mindedness that makes Ethan utterly devoted, completely on my side, endlessly loyal and my greatest advocate – he simply doesn’t have the bandwidth to see me any other way.

Thankfully for me, I can talk to Ethan about issues like the aggression over me having a different point of view, and he will see it, apologise and we’ll try again (not that it always runs that smoothly, sometimes I’m too tired and pissed off to explain – again – and will sulk or blow up instead).

Unfortunately for me, that same kind of self-awareness and drive to find solutions wasn’t there with my colleague.

I don’t work in that job anymore.

Being Reminded You’re Autistic by a Neurotypical World

There’s a saying, isn’t there? Something along the lines of, ‘an autistic person is only autistic when surrounded by neurotypical people’.

And yet being around neurotypical people is a requirement for life – at least for most of us.

I find, for my family, it creates a fine line on which we have to balance as we navigate our way through life.

When we are all at home, each doing our own thing but in each other’s company, life is calm, easy and perfectly satisfactory – until it isn’t.

 

The inner tug of war

We all have the desire, for some of the time at least, to be out experiencing the world, to be connecting with other people, to have friends and to be truly living.

The issue for some of us (the males in the family) is that it’s hard to find and maintain friendships in order to have people to go out and experience the world with.

It’s a strange and cruel aspect of autism in my husband and boys that, even when they say similar things, do similar things and act in a similar way to the people around them, they stand out. When talking to them, you get the impression they’re trying too hard; that it’s all a bit forced. And that, in turn, puts you – and the conversation – on edge. So much so that people avoid including them in social occasions.

It’s why Sam can get along with people on a surface level – there’s nothing to actively dislike – but doesn’t get invited to parties or nights out. It’s why the only way Oliver was able to remain part of a ‘going out’ group was by getting drunk or high – or both – and forcing himself to be the life and soul of the party (always the one doing the dare, climbing the drainpipe, going that step too far, anything that meant he could avoid conversation). And it’s the reason why Ethan after his 54 years on earth has, literally, two friends (both also neurodivergent).

Having to get used to seeing them sitting at home playing on their own or with ‘randomers’ on video games for hours at a time is something I’ve had to make peace with. And, most of the time, this fragile peace remains.

The problems come when I’m the one socialising in the neurotypical world.

Autistic in a neurodivergent world (AI image)

The mixed blessings of friends

This is where the balance becomes frustrating. Socialisation is something that both myself and my daughter need.

We’re both sociable and, to some extent (and whether we like it or not) have our confidence, self-worth and self-acceptance sustained by being an accepted by the world.

As neurodivergents, this creates a tension.

We feed this ‘can’t live with them, can’t live without them’ scenario with monumental effort before seeking the complete opposite of what we’ve just sought for our survival and retreating to a quiet, alone space to recover.

But here’s the irony, while we’re doing our best to fit in as proof – mainly to ourselves – that we are a bona fide, accepted part of the world, the experience of being with neurotypical people reminds us again and again, that we’re different.

 

Comparison, the joy-stealer

Out with my friends this week, who all have children the same age as two of mine (16 and 18), the talk, understandably, centred around exam results (GCSEs and A-levels) and the universities/sixth form colleges their offspring would attend, once the revelry of summer was over.

At the time of the conversation, their children were

1. In Spain with a friend

2. At a music festival with a whole group of friends

3. In London with their girlfriend, having just come back from a ‘lads’ holiday’

Meanwhile, my two were up the road in the same position they’d been in for most of the summer – in their rooms, on their own, playing video games.

The high-achieving neurotypical offspring of my friends, while not only enjoying the benefits of easy sociability, had all also got As, A*s and Bs (there was literally just one C among all 16 collective exams). And, as chatter around universities and colleges, IKEA shopping and mattress toppers reverberated around the room, my own delight at my youngest actually passing the four GCSEs he took and my eldest making it onto Level 3 of his electrical course (with the cohort of peers he’s studied with for two years now without seeming to make a single friend) wilted like a sun-starved marigold.

 

"While we’re doing our best to fit in as proof – mainly to ourselves – that we are a bona fide, accepted part of the world, the experience of being with neurotypical people reminds us again and again, that we’re different."

In the world, not of it

I love my friends, Most of the time I’m rejuvenated and uplifted by being with them. And the fact I’m out of the neurodivergent world that so much of my life inhabits is one of the reasons why these friendships are so important to me. But part of that is accepting that the version of life they talk about is going to look very different from mine.

This is the delicate line I tread – my kids don’t seem autistic, at least not in a way that is holding them back or limiting their life – until I’m among my neurotypical friends and am forcibly reminded of how neurotypical young people are living.

I know the important thing is that my kids (and husband) are happy, not that they’re the same as everyone else. What I struggle with is that I’m not entirely sure they are happy. That is, I think they’d be happier if they were able to go out with friends and it feel natural and easy, be invited to parties and enjoy festivals.

The more you’re in the neurotypical world, the more you’re reminded of what you’ve not got. I guess that’s the crux of it. And yet that’s the world we’ve all got to be part of.

 

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…