Having friends whose neurotypical kids are meeting all their milestones – as a parent of neurodivergent kids, is it really possible not to compare?

Last night I spent the evening with two very close and very lovely friends. They are kind, down-to-earth, inclusive and know of the diagnoses – and the struggles – that my kids have had and are still having. And they’ve not always had easy rides themselves with their kids.

Also, I wouldn’t ever want them to edit themselves or hold back from being able to talk freely about what’s going on in their lives and the lives of their kids. We’re good friends and we share in each other’s highs and lows – that’s what friends do.

And, for the most part, I have learnt not to let myself go down the comparison road with other people’s kids. But still, every once in a while (probably more often than I’d care to admit) I find myself uncomfortable, unhappy, unhinged and every other ‘un’ it’s possible to be when in the presence of other people talking about all the great things their kids are up to.

It’s got easier since I’m not at the school gates any more, with happy, confident, sociable, ‘successful’ children on every side while mine clings to me, trembling and begging not to have to go into the classroom.

These days, all of our kids are upper secondary school onwards, we’re (most of us) not so embroiled in their lives anymore as they make their own way in the world and we, at last, have more time for ourselves.

But last night, amid the talk of A-level results this Thursday, what unis they’ve all applied to, what back-up uni they’ll go to if they don’t quite get the grades (A,A,B) they need for their first choice, and tales from their inter-railing over the summer, new boyfriends, festivals and holidays with mates, I got that old flat feeling at the chasm that exists between other people's kids – and mine.

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This autistic life

My youngest has spent the last two years ‘learning’ from worksheets and text books in a room with just one other pupil and a Learning Support Assistant – too triggered, overwhelmed and dysregulated to be able to enter a classroom. As a result, he has no friends as all of his classmates have, quite rightly, progressed and developed and built friendship groups without him, as he has stagnated in a room. So, this summer, while they’ve all been at festivals and parties and proms, he’s been on his Xbox, reading comics and watching TV, alone.

I celebrated last week that he’d bought a walking pad so that he could get some steps in while he watched TV – it felt like progress!

Meanwhile, his elder brother has two friends – although it’s one main friend really that keeps the three-way friendship going. While this linchpin has been away for the past three weeks, my eldest son has seen absolutely nobody – the two that are left at home unable to fill the space and time without the third, lively, friend to bring them all together.

He did have a girlfriend – for the last four years – until she ended it six months ago. At the time, I thought it was a good thing. Sam was too dependent on her. He relied on her to organise him and get him out of the house. Saw her because it was comfortable, and he didn’t feel out of his depth socially. But it meant that he never pushed himself, didn’t step out of his comfort zones, and didn’t need to make the effort to build other friendships. I thought that the two of them splitting up would be good for them both.

 

It’s not you, it’s me

And it has been good for her. 

I imagine that being responsible for Sam took its toll. That it was annoying always being the one jollying things along, coming up with the ideas of things to do, trying to whip up enthusiasm to embrace life and seize the day with a partner who preferred sleeping in, staying in and looking in. I don’t have to imagine hard because that’s exactly how it is for me and, if I had my time again, the truth is I would steer clear of building a life with someone who is autistic.

That feels like an awful thing to say, because I’m basically saying that I’d advice girls not to ‘get stuck’ with my son. Perhaps if he was with someone who was similar to him – and happy to stay in, keep their borders small and live a safe, quiet life – I’d feel differently. But this girlfriend wasn’t like that and – although she was good for Sam in lots of ways – being with Sam, I don’t think, in the long run, was good for her. And so I feel proud of her for breaking away while she still could, before she got too entangled. Before they moved in together or had a child together or had a joint mortgage or any of the other things that could have happened to keep her with him. Or to cause her to finish it much later when there was far more for Sam to lose.

But seeing just now, on her Insta account, her camping out all night on a mountain with what looks suspiciously like a new boyfriend, going away with friends, smiling out among other happy faces painted with the England flag at a watch party during the World Cup… and compare that to Sam, who has spent his summer, mostly, on his Xbox or washing pots at the pub he works at amid the odd quiet night out with the two friends he has, it makes my heart hurt.

Other young people move on, build new experiences, meet new people, make new friends. 

Mine don't.

 

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Autistic genes

And I know this is how my boys are. The way they are, they wouldn’t want to be at parties or travelling around Europe. But another part of me thinks, how do they know if they never get the chance to try? And they never will because they don’t have the friendship group – or the outlook – that doing these things requires.

I love my kids dearly and this feels like something we’re not allowed to say, but I wish, for their sake as well as my own (but, mostly, for theirs) that they hadn’t been born with the genetics they have. 

I wish my kids weren’t autistic and didn’t have ADHD. Because yes, it might be that they never want to do those things that other people’s kids do (although I suspect that a part of them wants to want them) – but I think that if they had the genetics that made them a) want to and b) be able to do these things – go to parties, make new friends, have fun nights out, connect with people – they'd be happier. I think their self-esteem and confidence would be better. I think they'd feel more like they belonged in the world and that they were truly living.

However safe and comfortable it is, that's something you don’t get from hours of watching TV alone or playing solo-player computer games.

From walking home holding hands to feeling I would happily divorce him on the spot - welcome to the emotionally exhausting world of neurodiverse partnernerships

Hard to believe that, just a week ago, all was well with the world and my relationship, and I was walking along the road holding hands with my autistic but loveable husband. Even his irritating foibles weren't that irritating and, anyway, it could all be explained by his uniquely wonderful differently wired mind.

Yet, less than a week later, that same differently-wired mind is making me want to kill him.

Over tea (our evening meal, for those of you not in the north of England), he was stressing to our eldest son about what time he was going to get the car to the garage after work. Saying that Sam absolutely had to have it there by 5 pm and he better not be any later, etc. The impression being – and I think I'm right in saying that anyone would surmise the same – that the earlier Sam could get the car to the garage on the Friday afternoon, the better.

So I said, aiming to be helpful, 'Why don't I just drop Sam at work and then I can drop the car at the garage and they can start work on it whenever they like?'

The response to which was unexpected, to say the least. 

 

Confusion, anger and aggression – a winning combination

Ethan started aggressively asking why I would say that. Why that would make any difference. Whether I thought the garage could just drop everything and fit us in, etc.

He also, bafflingly, started talking about what time we would get the car on Saturday.

I was confused.

I wondered out loud what difference the time we collected the car on Saturday made to anything. Wasn’t this conversation about what time we could get the car to the garage on Friday?

Ethan continued (still aggressively) to make no sense, talking about why I would say I’d take the car earlier on Friday. Why was I interfering?

I was still just as confused. And, by now, angry. 

Why was he being such an idiot? Plus what the hell was he on about? He'd been stressing about Sam getting the car to the garage by 5 pm, I'd just offered to solve the problem by dropping Sam at work myself and then dropping the car at the garage earlier so he didn't need to stress about whether Sam would get the car there by 5 pm. I presumed I was being helpful. 

And I was getting blasted for it. 

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The ‘afterwards’ problem

After Ethan had ranted and got aggressive and been generally unpleasant (and this is the problem, it's always afterwards) he revealed the key piece of information that the garage was only going to loosen the bolts on the car last thing on Friday, ready to do the work first thing Saturday morning. So, in his head, Ethan shouting at me about whether I thought 'the garage would just fit us in whenever we wanted' made complete sense, because the guy wasn't going to work on the car until Saturday morning, but needed it last thing Friday. Therefore, why was I getting involved and why was I making ‘stupid’ suggestions?

The problem was, Ethan hadn't communicated this key information to me (or, in fact, to any of us) and was then angry that we didn't instantly understand the situation and that I was 'interfering when he'd already made the arrangements'. One of his lines, when I suggested I could drop the car, was 'I've made the plans, why are you interfering? Sam's dropping the car by 5 pm. That's what's going to happen.' 

“Ethan hadn’t communicated this key information and was then angry when     we didn’t understand”

And that’s the problem. The rigid, inflexible (I know, the mean the same thing!), obstinate thinking that won’t flex to what anyone else is saying – not even enough to make room for a slightly different angle.

In one sense, this was a simple case of miscommunication. But it's the same thing that happens again and again. Ethan only shares half the information but, in his head, thinks he's explained fully. Then, when other people ask or say something that doesn't fit with what he thinks he's told you but hasn't, he gets mad. 

I know it’s because his ADHD brain has missed out on communicating a chunk of essential information. I know it’s because his autistic brain can’t bend and flex to fit in another perspective. And I suspect a part of it is rejection sensitive dysphoria at feeling his authority and decision-making is being questioned.

But none of this understanding makes him easier to live with in the moment he’s behaving like a narcissistic knobhead.

As a side note, he’s also always sorry afterwards but, again, a mumbled sorry afterwards and then the same situation repeated ad infinitum, wears a bit thin.

 

The problem of drinking when you’re autistic

The other problem is that, even if the other person did have the wrong end of the stick, rather than communicate calmly and reasonably like a normal person, he gets angry, attacks and belittles. 

Which makes the other person think 'sod you'. Which is probably one of the (many) reasons he has no friends. 

And yet, when he's not behaving like an idiot, he can be so lovely and thoughtful and kind. 

Those times though, do seem to be getting less frequent and the knobby times getting more so. 

They're not helped by the fact he spends half his life slightly drunk. Hiding rum in a cupboard and topping it up whenever it gets low so I won't know how much he's drunk (or so he thinks). I'm actually starting to think sod it myself, let him drink himself to death. The problem is, when he's drunk, he loses the little bit of filter he has, and the effort he makes, when he's sober, to stay calm, process information before reacting and manage his emotions, dissolves (which, clearly, is why he likes/needs to drink). 

But each time we hit an episode like tonight, those handholding moments seem more and more out of reach. 

     

           

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.

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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.

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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…

Choosing what to focus on...

Have been away a long time.

Although, actually, in terms of my life and finding positive ways forward, have been very present. Which is why I've been so absent on this blog. I've been too busy making things work to write about things not working!

And perhaps it's partly not focusing on what's wrong - in my marriage, with my husband, in our family, that's helped me to find enough of what's right to find a way forward.

I've found that moaning about my husband (on this blog or face to face) isn't always helpful. Sure, it's definitely good to vent at times, and to share experiences and to know that other people are facing the same challenges and that we're not a) alone b) crazy c) just the partner of someone with Asperger's but are so much more than that...

However, sometimes, it's also important to look past the frustration and to chose to focus not on the negatives but on what is positive about our partners (I know that my husband would never, ever cheat on me, he's amazing at sorting out practical problems, he does his best - most of the time, he criticises me far less than I criticise him...) I know that not everyone is so lucky and that some days it can be really hard to find anything positive to be thankful for or to focus on, but it's a path that I'm trying to take.

Since last writing a post on this blog, I've discovered that my ten-year-old son also has Asperger's Syndrome. In his innocent, childlike way, he's very open to telling people that he has a different kind of mind and, so far, his friends are all very accepting of it (far more than my generation of adults are of each other - my partner still hasn't told anyone about his Asperger's). At his tender age, my son seems to have found a peace within himself (he has his moments, obviously...) and has a healthy self-awareness so that, even when he's having his meltdowns or feeling overwhelmed, he recognises it for what it is and can get his perspective back pretty quickly. I'm glad, for him, that he's got an understanding early on of who he is and how his mind works and that, so far, his peers seem very accepting of the various issues amongst them (one has dyslexia, another has Asperger's and another has anxiety... it's almost become 'normal' not to be 'normal'! Plus they all get an extra 15 minutes in their SATs which has to be a bonus!)

So, I'm sorry to have been away so long. But I'm glad that, for me and my family, we're finding ways to move forward - with all of our hangups, personalities, strengths and weaknesses. And I do hope that you are too.

Negative or practical?

Argh! Why do they seem to delight in finding fault whenever possible? Why, when there's a choice between seeing/pointing out something positive and helpful or seeing/pointing out something negative and unhelpful, do they always go for the latter? Have just shouted at my Aspergergic other half, in full hearing of my 11-year-old daughter, that I feel like stabbing him....not ideal bedtime conversation for my daughter to overhear but was exasperated beyond belief. He's been saying to me for ages that we should get our very flexible 6-year-old to gymnastics classes (by 'we' he obviously means me), so I've done it-arranged a trial session for tomorrow at 4pm which he will have to take Oliver to as I'll be at work. When he discovered it's a few miles away and lasts for an hour his response was 'What are you going to do when I'm working? You can't drag Sam there for an hour. I think they can only really do clubs that are in the village' (which narrows it down to swimming and football!) Reading this back I can see he was probably just thinking out loud and genuinely wondering how it would work with an 8-year-old in tow. And maybe, after 17 years, I'm like a tightly coiled spring poised to snap at anything resembling a negative reaction from him. But, flipin heck, he's been on for ages about getting Oliver to proper gym lessons (as opposed to a school hall with a couple of benches), I've done it and he's still moaning and pointing out everything that's wrong. It does crush the spirit somewhat.  The downside to my righteous indignation, however, is that he might have a point...

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!