Autism, ADHD, OCD… and why no-one can say the word ‘squirrel’

My youngest child, Oliver, characteristically catapulted towards his diagnosis of ADHD and autism with an intense, dramatic and drawn-out mental health breakdown, aged 9.

The polar opposite of his elder brother, Sam, from the moment he was born, as a toddler Oliver rarely stopped smiling, was very sociable and was always in the thick of the action, throwing himself headlong into everything.

He was the child in A&E (ER) more than the other two combined, the child who would come home from school covered in paint, mud and whatever else he’d found to throw himself into, and who shouted rather than spoke — so much so that school recommended a hearing test.

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Photo by Amit Gaur on Unsplash

By year 5 though, school was breaking Oliver. He was behind in maths and English, seemed unable to listen or follow instructions, didn’t seem to understand what was required of him in tasks and was often, according to his teacher, ‘silly’. Also, other pupils found him ‘too much’ and ‘annoying’. All of this was thrown at me during a parent’s evening while Oliver, in the corridor outside, heard every word of the entire character assassination.

I found it hard not to cry as I was hit with all these ways my wonderful, creative, happy child was malfunctioning and unacceptable, so how it felt for Oliver, aged 9, to be hearing all of this, I can’t imagine. All I know is that, before I went in to see the teacher, he was full of cheeriness and chatter and wanting to show me his project book. When I came out of the classroom, he was a very different child.

What followed was two years of Oliver unravelling.

School went from being somewhere he was happy to go to being somewhere that took every bit of his strength and courage to face. He became anxious that he didn’t understand the work, that he didn’t know what to do, and that he wasn’t like the other children. Knowing that they all found him annoying probably didn’t help either.

Before long, Oliver’s anxiety had grown into crippling OCD. He couldn’t walk because he couldn’t choose which foot should ‘go first’. He couldn’t eat in case the food was poisoned. He couldn’t use a fork in case it hurt the (poisoned) food, he couldn’t say certain words in case saying the word made it happen or he turned into it (even words like ‘bread’ and ‘squirrel’ were outlawed. In the end, he just stopped speaking altogether). He also went through phases of hair pulling, clawing at his neck until it bled and washing his hands and face repeatedly until his skin was sore.

Somehow, we stumbled through to March of Year 5 — on top of everything else, we were all utterly sleep-deprived as, unable to be alone with his thoughts, Oliver spent every night on a mattress on our floor, carrying out compulsions through the night that were never right.

But then… Covid!

And while most children struggled with homeschooling and isolation, Oliver thrived. Given that Oliver was, by now, being assessed for ADHD and had obvious mental health challenges, he was one of the children allowed into school. One of only a few other children, and with the time, space and staff for more personalised teaching and a day punctuated by freedom and movement (and the run of the trim trail!) Oliver thrived.

His learning came on, his OCD symptoms lessened, and we saw glimpses of the original, smiling Oliver. But, as soon as June hit and normal life resumed, Oliver’s anxiety ramped up once more, his ability to learn shrank back, and his OCD returned with a vengeance.

High school was worse, with multiple suspensions, a near expulsion, fights, drug and alcohol misuse, exploitation and, eventually, Oliver confined to one room, worksheets and a precious few wonderful Learning Support Assistants as he withdrew completely from mainstream learning but was denied specialist provision by the council.

Within all of this though, key turning points came with Oliver’s diagnoses of ADHD and, later, autism. As well as enabling more support (those ‘special privileges’ of twenty more minutes anguish in an exam or an LSA sitting in lessons with you drawing even more attention to the fact you’re ‘special’, just what you want when you’re 14), Oliver’s diagnoses gave insight and an alternative narrative into his ‘behaviours’, ‘inability to focus’ and ‘refusal to follow instruction’ which may just have saved his — and our — sanity.

But while Oliver’s battles were loud, dramatic and impossible to ignore. Ava’s were the opposite. While Oliver unravelled in front of us, Ava quietly hit a wall. Looking back, the signs were always there, just hidden beneath years of masking and perfection. More about Ava’s diagnosis of ADHD and autism — in her own words — next time.

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…