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.

Autism, the Holy Grail of education and chocolate-covered custard creams

After eight years of epic struggle (his first four years of school, before learning got less playful and required more sitting still and listening, were OK, good, even…), today marks the end of the first week of specialist autism college for 16-year-old Oliver.

It’s not just a relief for him. After eight years of defending him in meetings, representing him in meetings, advocating for him (and AuDHD in general) in meetings and battling for some level of provision and adjustment for him in meeting – and this is just one of my neurodivergent kids! – I we are done trying to fit into a one-size-fits-all education system. And I am, I realise, absolutely knackered. Thank god we didn’t have a fourth!

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A funny kind of thankful

And I’m grateful. I really am. Grateful to the council for funding his place (although, given that it was clear to everyone that Oliver needed specialist provision three years ago and they said no – leading to a cataclysmic breakdown and Oliver learning alone in a classroom from worksheets for the last two years – I think they were left with little choice). I’m grateful to the college for existing for people like Oliver. But, at the same time, I’m grieving for the life that 16-year-old him is not accessing.

At his college, there are literally six other students – in the entire college. (Just one of them is doing Sports Studies – one! Makes me wonder what possible sport he can be partaking in – athletics? Yoga? Walley?!)

Whilst Oliver couldn’t be dealing with large groups of people, busy corridors and sensory overwhelm, having so few students in the college allows for a very small friendship pool. And as everyone travels long distances to be there, even if he did make some good friends, he wouldn’t be able to freewheel off with them somewhere after college, as they all get picked up I taxis and whisked home as soon as the college day finishes.

I remember my 16 year old self and all the (mis)adventures and memories I made. It was probably the best time of my life. It’s sad that, for many autistic children, the choice is either overwhelm and autistic shutdown at a mainstream college, or shut off from the world and any chance of having those adventures and making those memories at a specialist setting.

Education's unobtainable Holy Grail 

I feel like the sentiments of this year’s SEND white paper, that calls for better integration of SEND students into mainstream school is, actually, the Holy Grail in all of this – if only it was possible.

·         Because teachers aren’t properly SEND trained and, even if they were, the extent of the curriculum, pressure to reach targets and reduction in classroom support would mean they don’t have the time or space in their teaching to accommodate different learning styles and needs.

·         Because secondary schools will still be huge, sprawling buildings that smell of cabbage and mashed potato, filled with echoing corridors and hundreds/thousands of other people.

·         Because learning will still, mainly, happen from the front of the class, through spoken word, written word and memorisation, because that’s the only way to teach en-masse when there’s one teacher and 30+ students – but these approaches don’t work for so many neurodivergent, visual learners.

·         And because, by trying to circumnavigate some of these challenges by having bigger SEND bases within mainstream schools you are, effectively, just creating mini specialist settings within mainstream schools. Turning the neurodivergent students into the ‘other’.

Honestly, I don’t know what the answer is, but surely there must be one? In the meantime, I’m just so relieved that I won’t have to be having any more battles with teaching staff and systems that don’t understand reasonable adjustments, and that Oliver can finally start learning about things that interest him and in a way that makes his brain come alive.

 

‘Not just’ any custard creams; Not just any family

Meanwhile, the eldest autistic in our family continues to drive me mad with his exasperating behaviour.

I mean, I absolutely advocate for autistic people and always will but, at the same time, living with their foibles – or at least my husband’s – can be infuriating.

Just yesterday, he admonished Oliver for eating two out of the packet of six chocolate-coated custard creams he’d bought from Marks and Spencer (for those who don’t know – it’s the Ritz of grocery shopping).

It’s a loss of control thing – he struggles with anything that takes control away from him and how he thinks things should play out…

Which, it seems, was him eating them all as, later that night, he took the (unopened) second packet of white chocolate-covered custard creams – arguably even better than the plain chocolate version – and ate not just two, but the lot (the evidence there for all to see in the bin the next morning)!

The hypocrisy is incredible! As is the complete lack of moderation or impulse control.

His reaction, on being discovered, was to go out and buy three more packs which he swears he won’t be eating any of. This is always what he does (this happens a lot) and, invariably what happens is that, they stay in the cupboard unopened (or opened with just one or two eaten) until, one night – normally when he’s a glass of wine down – his impulse control will go and he’ll eat them all again!

A is for ADHD and autism, B is for backburner, C is for clarity (and Canada!)

This week I waved my daughter, aged 21, off to Canada for eight months on an optional year abroad tagged on to the end of her degree.

For a while there, I thought she wouldn’t make it.

Three weeks ago, she had nowhere to live, no flight booked and, each time I suggested we look together at getting things sorted, she was ‘too stressed to think about it’.

She’s also got herself loved up since she first signed up for her Canadian adventure and, for two and a half weeks before she was due to go, rather than sorting out her sh*t and/or earning money to fund her sh*t, was out with her. She coped with the impending separation by ‘not thinking about it’, which, seemingly, was the same tactic she used regarding everything that needed to be sorted to enable her to not just arrive in Canada but have somewhere to live when she got there.

 

The alarm-snooze cycle

Ava gets overloaded when she has stuff to do – so much so that, rather than do those things, or at least some of those things, to help clear the decks, she will instead set ten different alarms on her phone, write a list covering every detail of what she has to do – and then retreat into task paralysis. Staying up late watching comfort TV and scrolling through her phone, only pausing to snooze the constant alarms buzzing on her phone, then feel even more overwhelmed the next day as her list grows and her achievements wither.

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It’s been the same with every assignment she has had to do while at university – she’ll do everything but make a start on it until the deadline is almost crushing her, then stay up all night to get it done.

This approach recently bit her on the bum when her dissertation and two of her final assignments were all due in the same fortnight – a result of her having been given extensions and still leaving everything to the last minute where they collided spectacularly.

This time, instead of doing her usual staying up for two or three nights to get them done, she got septic tonsillitis as a result of being so run down and stressed, resulting in me driving up and down the motorway keeping her fed and medicated while she worked through the pain and turned in her work – then slept for a week.

She does generally manage to pull it out the bag – and still achieve firsts – but exhausts herself and everyone around her in the process.

 

Deliberating, delaying and dreaming

So it was great to wave her off to Canada on Tuesday, knowing that, once again at the 11^th hour, she’d organised somewhere to live, four other people to live with, her flight and her visa. But we were both up most of the night the night before (during which I made a total of four trips from the hotel room to the car and back to collect things we’d forgotten while Ava sat stranded and soaking in the shower because we’d forgotten to bring shampoo). And we had to do an emergency repack literally as we were leaving for the airport as we couldn’t fit everything in!

But, in the rush of the moment as Ava was heading to check-in, I also managed to buy her the wrong SIM card (UK only) and put my car keys in her rucksack side pocket for somewhere to put them – the fact that it – and therefore they – would be going to Canada with her momentarily escaping my attention. It was actually Ava this time that alerted me to the fact.

So maybe we’re not so different. I too find that I can spend most of my working day deliberating, delaying and dreaming, only to be struck with motivational panic at 4.30 pm when I realise it’s almost the end of the day and I’ve not got anything done.

And I too write endless lists on little post-its stuck all over our house, then hyperfocus on the lists and how much there is to do, rather than just making a start and crossing things off.  

More and more, I’m realising that the autistic and ADHD traits that I see in my diagnosed children are also traits that I myself have – but which, growing up in the 80s, I never had the language, knowledge or self-perception to understand and which, since marrying a partner with AuDHD and then going on to have three children with the same diagnoses plus OCD chucked in for good measure, I haven’t had the time or energy to process.

Perhaps now, that time is here.