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.

Sam is screaming. Sam is growling. Sam is banging his head on the metal undercarriage of a caravan. Sam is autistic.

At this stage of my journey charting the ups and downs of neurodivergent family life, I felt it might be useful to share our journey of discovery into each of our childrens’ (and my husband’s) autism and ADHD in the first place.

First up (and first to be diagnosed in our family) — middle-child, Sam.

Sam spent most of his early life screaming and clawing at my face whenever I held him. He never crawled. Rather, he bum-shuffled his way around the world until he decided to walk at around eighteen months.

And if anyone bent down to Sam’s pram to say hello to this little bundle of joy, he would growl.

On one holiday, at around a year old, Sam bum-shuffled under our caravan where he stayed put for a good half hour happily (and intentionally) bashing his head against the metal undercarriage, blissfully unreachable by any of us.

Autism, schoolfriends, clubs and playdates

As he got older, Sam made friends; but it took concerted effort on my part to develop and maintain these friendships — getting to know mums at the school gate, inviting children back to play, signing Sam up to Beavers and after-school clubs and, basically, ensuring his life included socialisation. Often, I played more of a part in his playdates than he did, with ‘organised fun’ ready for when his social battery ran out. Happily, at that age, his little friends, mostly indifferent to Sam zoning out and watching dinosaur documentaries by himself, would happily carry on entertaining themselves.

At school, his big sister reported he would often ‘play’ by himself in the mud — the mud and stones acting as the characters, while he muttered the lines they said to each other as he reenacted scenes in his head. At home, he did the same with lego figures for hours in his room — seemingly needing to act out what he saw or thought as a way of processing.

In those days, I was often called on to stay behind and talk to Sam’s teacher — about the loud and distracting animal noises he made during carpet time, or the occasion when he was ‘being a dinosaur’ and ripped a classmate’s expensive new coat while ‘eating him’. It wasn’t bad behaviour. In that moment, Sam was a dinosaur. Most likely what went through his head in that moment was, ‘I’ve caught this stegosaurus. I better rip him up before he gets away’. Alternatively, there might have been nothing running through his head — just the adrenaline of having caught his prey. What definitely didn’t go through his head was, ‘hmmm, biting this kid’s coat might actually rip it. Never mind, I’ll do it anyway’, as both the teacher and the mum of the other boy seemed to suggest.

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Autistic realisation

For Sam, the gradual dawning that perhaps his mind worked a little differently and that banter — a vital skill to master in Year 6 — was a mystery to him, coincided with I’m a Celebrity fever gripping his school and, in particular that year, Anne’s frolics and foibles as an openly autistic contestant. Sam’s classmates, like most of the nation, liked Anne but, as the children around him discussed what Anne had said and done, Sam recognised something of himself.

Unfortunately for Sam, the realisation hit just as the class lined up for registration, and all I had time for was a quick reassurance that he might be (he was undergoing assessment at the time), that was fine and that we’d talk about it after school. I spent all day worrying but, when we spoke that evening, Sam took it all in his characteristic stride and seemed relieved to know why he saw the world differently — as was confirmed with his positive diagnosis a couple of weeks later.

Today, after a tricky but, unlike his brother, not quite soul-destroying, time at secondary school, Sam is now training to be an electrician — the practical element of the learning suiting him much better. And, while he still definitely needs ‘alone time’ and only really has one close friend, at the age of 18, he’s recently discovered alcohol as the great leveller in social situations (more on that in another post) — and is actually enjoying the experience of going to the pub sometimes.

But if Sam’s difference was visible from the beginning, his younger brother, Oliver, was the opposite. Where Sam was steady and inward, Oliver was excitable and loud. His challenges didn’t arrive all at once; they crept in through the cracks, only becoming visible when the world began asking more of him than he could give…

More on that in my next post.

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.

 

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.