It’s essentially a set of feelings – relief, fear, bewilderment, hope – that douse my memory of Isaac’s diagnosis, such is the power of emotion to burn with an everlasting flame.

But there’s also a set of words that, ten years on, retain their own particular flicker. Long after the paediatrician’s discussions about observations, plans and milestones morphed, moved on and wiggled this way and that, the specific theme of one sentence, “Not displaying the innate and intuitive social skills to play with peer group” is something that has hung unreconstructed around my head; haunting me less and less whilst helping me more and more, like a well-meaning ghost.

Because this is what initially ignited my understanding of Isaac and his autism and will always reverberate. I’d seen the delays, repetition, lack of speech, distress and confoundment but the component that crystallized his social communication difference was this – making sense of the daily image of him at nursery babbling and busying himself alone, impulse and interaction free when it came to the other children; 3 year olds already versed in the instinctive, non-verbal and verbal social mores of the neurotypical.

My mind used to speed into a tailspin with the words’ implications for friendship; whereas in recent years they’ve idled along in a gentler manner, less intrusive but as instructive as ever for social situations; if not more so. There is no doubt that the limited negotiating, deficit in decoding of expression, and minimal intuition for mixing with peer group were a bullseye for Isaac’s diagnosis. But seeking a silver bullet to rustle up some sort of “normal” instinct was never a stance, even in the darkest times, when his torment was most difficult to translate. The older he gets, the more absurd that has felt anyway.

Of course, Isaac has had, and continues to have, effective intervention in the form of speech, language and occupational therapy, friendship groups, one-on-one focused learning and more – the list is bountiful and the application of them all has helped transform him into an exceptional social animal. Plus, on a broader level, a plethora of ever more evidenced based treatments from tech-enabled social skills programmes to anxiety managing apps are appearing and enhancing lives. All championed and pioneered by organisations like Autistica, and all with the aim of meaningful and positive outcomes for autistic people and their families.

But that set of words hones in on a most nuanced of traits that, as many autistic adults agree, is steady and lifelong – in particular “the innate and intuitive social skills” bit.

And it’s one trait within a wide ranging condition. A stubborn strand in the most layered of human tapestries. Indeed, autistic spectrum disorder, I’ve touched on before, is at tiny risk of having too-many-to-tie-together traits. There’s a creeping sense of trying to please all the people all of the time (purely) description wise; should we steer clear of sticking jelly to the wall?

A consensus that autism lives on a continuum is universal. As is the definitiveness and critical nature of getting a diagnosis. I am wedded to the binary belief that someone is on or off the spectrum. However, echo chambers as to autism’s many challenges or strengths or both, inevitably exist – each populated by any permutation of autistic people, parents and professionals – which, on a bad day, become more repelling magnets than Venn diagrams. Individuals with different abilities and identities, dot around and all have their own truths– as Stephen Shore said, and I’ve repeated a thousand times, “when you’ve met one person with autism, you’ve met one person with autism.”

Which is not to say the autistic spectrum doesn’t remain the most relevant and invaluable articulation. Lorna Wing, who pioneered the concept, did acknowledge its limitations late in her life.  But, as I discovered recently, actually enforced its clarity (and her legacy) by saying that “the one thing that is consistent among people on the autistic spectrum is problems with the social instinct.”

This ladders ever so neatly back to that formative set of words – “not displaying the innate and intuitive social skills to play with peer group” – that will always have a role within Isaac’s multi-faceted character. Whatever changes in my – and increasingly Isaac’s – autism instructional manual, however many volumes get written and re-written, Isaac’s social instinct issue has a “page one” feel.

Well-thumbed and well-refreshed, the manual is dense with chapters on repetition, routine, co-morbidity with ADHD and dyspraxia, anxiety, mental health as well as transport, music, tech, humour, infinitesimal fact learning, photographic memory, dog phobia, abstract and comprehension troubles, potential, paradoxes, sensory processing. Endless. And in many ways Isaac’s autism has an elasticity that is a microcosm of the medical definition’s. Tricky to pin down. Yet forever tethered to that set of words – that set in my brain’s stone all those years ago– and are so tight to Wing’s words too.

But, but, but. A bit like one of those optical illusion works of art, where if you tilt your head, adjust your eyeline accordingly, and then – ping! – you see something in a blazing new light, “problems with social instinct” may say as much about neurotypicals (non-autistic people) as it does about autistic people. I believe Lorna Wing was very much leaning into this territory.

Should neurotypicals take a good hard look at ourselves?

Social instinct can be a shonky, untrustworthy, and rather deceptive thing. Full of its own “problems”. Half-truths, words hanging. Human error. Misleading expressions. Whirring conversations. Pretending and interruptions:

It’s the natural sensibility of the majority but that certainly doesn’t mean it’s correct.

Indeed, it’s emblematic of everything that Isaac isn’t. He cannot lie, eye contact is a real discomfort; chit chat, and incomplete sentences (“Dad, stop pausing your words!”) all things he hates. His way is outright honesty, being straightforward and straight up. A loveable, literal logician. Facial expressions freak him out. Conversation without rules and order grate and chafe. He’s the Sergeant Major in a social situation, following suit can be fun and it can frustrate too. It’s why peer on peer at 3 was hard, and it’s why at 13 it’s far from a walk in the park too.

This alternative way of being is Isaac’s social instinct – part learnt and regularly tweaked, but, importantly, part of his innate soul too. It can mean his utter candour and charm are often pitted against a difficult-to-integrate-into-our-lives need to dominate proceedings and oft be on repeat – and there’s this well-defined diagnostic underlay for sure. Whether sensory processing, speech and language, or working memory – they all crisscross in some ways with social instinct problems.

Yet taking a look at Isaac on any given day says much about his very particular social instinct and why it bangs a drum for autism acceptance and that a balance must be constantly struck between what should be treasured and what should be treated. His autism, his positive lived in experience, increasingly shines through brightly and powerfully – and should be allowed to.

Because how he (instinctively, intuitively – both) interacts and views the world never ceases to make me stop, think and embrace. Within family life, he’s full on or he backs off. Formal and polite (“may we commence our father and son stroll, please”). Then forever eccentric, funny, slapstick, lover of silly sounds, wonderful and wacky. Impressions – incredible. We enter his world, he ours. Time together, as close as imaginable; time apart too; no family dinner, no problem.

The first lockdown’s stifling nature hit him perhaps hardest, yet, as his school said, he showed maturity during the latter two with the bedding in of an online structure and coupled with going back into school early – special treatment for SEN students, one of the few government successes – he adapted amazingly. As technology tests us all, his more learnt type of social skills attuned as they are to cyber, are ones he’s passed with flying colours.

Stuck at home, or not, Isaac is still this kind of half in, half out, solid citizen in so many situations. Despite rarely acquiescing he always attracts, his tone may appear haughty or hilarious, and with his passions he has an earnestness that’s part preachy, part thrillingly heart melting, part informative, but always well intentioned:

“Dad, as I complete breakfast, may I talk about the Crossrail project delivery plans from 2022 until – oh dear apologies – the 2042 extension down to Hayes and, gosh, I must say you’ll be old by then. But I mustn’t, you know, refer to the end of your life. So let me talk about this, well, rather exciting first development of operational testing also known as Trial Running…”

Before word for word recounting a five minute film, peppered with some personal and kind asides such as that one about my mortality. “Isaac has a big hippocampus,” says his younger sister, Tabitha. (Any date mentioned always triggering a precise memory from the same date from any previous year.)

After which, his conclusion of, “it’s 8.31 now, time to brush my teeth.”, will lead her to chuckle collusively but adoringly his “love of ACTUAL times!”.

Utilising his particular social instinct, he shows an assertiveness that’s so often sensitive too (and unintentionally, brilliantly, funny).

Setting off for a train spot in my new, very old, car, I announced only I was insured, so “mum can never drive this, it will only ever be me.”

Horror and concern:

“What, dad? Is this car from Saudi Arabia? I don’t believe it is a good car to drive. How can women not drive cars. This is awful. Poor mum.”

And I’m often reminded too that it’s my social instinct that can be just as problematic, with Isaac having to fit into our world.

For example, I’m not known for my megawatt smile. And quite often, like a doctor shining a torch to see some barely swollen tonsils, I catch Isaac examining my resting face millimetres from me; desperately looking for sign, any sign, of my mood.

“Are you OK dad? This frown of yours. What’s wrong? Maybe you should smile if you’re happy, dad.”

And, when I’m masked up, as is always the case in these covid times, he has an ease about himself. No need to translate the subtleties of “these difficult facial expressions of yours dad” and differentiate between my content, straight, sad, or stressed expression, just a “calm look, I am hoping dad. With this global pandemic we must socially distance. And you are being safe dad. So yes, I’m thinking under that mask you are a calm man. And happy, on this open air train platform as I film. You’re ok? I love you.”

Learning about the importance of facial expressions and transparent communication for both of us encapsulated there and then.

Then there’s that honesty, with its punch-in-the-face politeness, “Grandma, you do understand, I know now you are in our garden because of, you know, this next stage of the pandemic. But I will be wearing these headphones, so please speak up, and I may go inside because of those horrible buzzing flies and things. Please be positive. Bye!”

And off he goes, upstairs, into his jollily curated world that encompasses digital connection and satisfied solitude.

I should say, Isaac’s school is his familiar, family-like world, where the legends in his life know how to finesse, celebrate and integrate. They have that earlier referred to balancing skill of which instinctive traits to treasure and which to treat, in beautiful abundance.

Their ethos of “think differently”, applied daily – hourly – with the skill of the most exacting craftsperson. A glance at any element of his holistic education demonstrates this – such as his behaviour support plan which covers everything from when to let him go big on his special interest, to taking time to breathe and let others in. Strategies for reining himself in, to plotting personal space, to how to focus.

With the school’s unique pastoral care, and singular academic support that’s keeping him within his key stage, it’s no wonder Isaac is forlorn during holidays nowadays, “these days are terrible, dad. I must be at school. Where I can work. Not in this house. Please!”

But he finds ways to cope. Via compiling, editing and delightfully commenting on his train films. Plus, playing the pivotal-to-his-life, train simulation game, Train Sim World 2; in which, by night, he learns route tasks, buzzes at the identical-to-the-real-thing CGI, designs liveries, studies complex controls, vigilance pedals, automatic warning systems – you name; preparing for the day he lands his dream job of train driver.

As well as, crucially, thriving socially thanks to his emerging friendships. Friendships that are neither peer to peer nor based on innate social skills. Young people of varying ages on their own wavelengths sailing different seas on this diverse planet.

Which leads me back to the beginning. The reinforcement of the reverberating paediatrician’s words, and reinterpretation of Lorna Wing’s. Both will always be potent. But as I’ve come to confirm, reminders to me of his difference; not what he didn’t display, but what he now does. This particular social instinct and its halo effect on all he does. The page one.

Because as he immerses himself in “this teenage life” as he calls it, and “being autistic like my new friends who I’ve known since October the 17^th and people I like very much at this point in my life”, I find my instinct is to frequently step aside and make way for his instinct.

Safeguards in place obviously (as they would for any thirteen year old).

Thanks to the glorious Transport Sparks Facebook group, Isaac has autistic friends who have the same interests, and communicate in similar ways. Exactly the “type of humans” he firmly demanded.

Made over the last six months or so, with intermittent meet ups, when the world briefly opens up, in the open air of a platform. Myself and an accompanying adult very much “in the gods” of the platform whilst two YouTubers take turns to talk minutiae, film, spot, and talk again.

Bite sized conversations with beginnings and ends. An ingrained etiquette akin to walkie talkie type speaking, I imagine “overs” and “over and outs”. Respectfully referring to each other by their YouTube names, with train information the currency but not in a competitive way.

I grab nuggets that I can barely discern – about enable overriders and dead man handles. Lines, platforms, destinations. Southern class 377s and freight engines excitedly coming into view. A class 350 here a ton of timetable titbits there.

All of these interactions and so much more replicated online. Shared and nicely commentated on in films. Premiers, shout-outs and live streams. An authentic community. Isaac the stickler for rules and regulations, stamping on spam and any inappropriate comments.

And then, of course, facetime and phone calls. Daily at the same times, part of routines. The rigidity in Isaac’s life that puts wind in his sails. To animatedly discuss, be himself and have an independence. Plenty of gobbledegook and giggles too from what I can ascertain.

Isaac asked, not so long ago, who my autistic friends were when I was growing up. That stumped me. In my socially siloed world, I had none. It may be to do with the time, place and society I was in. But not completely. It will always gnaw, knowing that. What I now know makes amends a little, seeing Isaac accepted and appreciated as the young man he is, will be, and has always been.

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