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.

 

SEN or not, we're not testing our young people on what matters

So, GCSE results day rolls around once more.

A day when, whether you’re on board with the system or not, every 16 year old gets judged. By how much they’ve revised, by how much they’ve applied themselves, but also, for factors completely beyond their control.

By the kind of brain they were born with that, unless it fits the narrow, western curriculum's definition of intelligence, will be rated poorly – however creative, original, intuitive or kind is may be. By how well supported and stable their life is and by how well they performed in a particular two-hour-period on a particular day, no matter what else might have been going on in their lives at the time.

AI generated image

SEND and (the current state of) mainstream education don’t mix

As I wrote on social media on results day about my son, Oliver, who is autistic and has ADHD and OCD and for whom school has been a struggle every step of the way – not because he’s stupid, but because school – western style – overwhelms him. Because lessons aren’t taught in a way that his brain can access. Because 1,800 other young people in one place – with all their associated sounds, smells and sensations – causes sensory overload to such an extent that he can’t think about anything else…

As a result, he wasn’t able to make it through a single full school lesson during his GCSE years, so even just taking four GCSEs – which still involved him having to sit ten exams – was something of an achievement.

This is what my social media post said on results day:

“So proud of this kid – and all the kids like him – for whom GCSE results are a dim reflection of who they are and all they’ve achieved.

So proud of him for keeping on going, for doing his best and for refusing to be beaten by an education system that not only wasn't designed for him, but which very nearly broke him. Others aren’t so lucky.

The biggest of thank yous to the wonderful people who made school bearable – and even fun sometimes! And who ensured Oliver left mainstream education with his self-esteem intact. The British education system needs more like you.

So, whatever your exam results, to all those neurodivergent kids out there battling through systems that allow others to excel while they give it everything they’ve got and still can’t hope to reach the standards the world holds up as ‘success’, you’re amazing. Keep being you.

And to all the kids who have achieved great exam results, you’re amazing too. The world needs us all.”

Are we testing – and learning – the wrong things?

And, in a world where we have an ever-increasing army of machines to remember, regurgitate, analyse and calculate, thank god for minds that create, diverge, entertain and inspire – whatever their exam results say.

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…