What the future holds

I can’t overstate how overdue it is. At last, at long, long last, autism is pulling up a chair at the diversity top table; the world has woken up to the woeful statistics of autistic adults in work.

Slotting in between standard bearers of equality, such as gender, ethnicity, social mobility and wider disability is a definite squeeze. The hope being a pluralistic stance will jolt any jostling or pecking order. Inclusion is the rallying call and requirement for all ‘others’ after all.

Interestingly autism or autistic spectrum disorder isn’t the terminology gaining traction. Someone, somewhere has soldered social exclusion, neurological condition, difference, historical guilt and human rights and come up with the not entirely instructive ‘neurodiversity’. What it lacks in clarity, it makes up for in context. The context being a lateral, more sensitive look at the brain, the mind, the diverse.

The heavy gravitational pull is towards autism, the condition, effects, challenges and more. The forum for a fairer world is poised. Employers are equipped to talk to people on the spectrum thanks to pioneering programmes and charity partnerships. From banking to retail to tech, industries are offering the right opportunities to those who roam leftfield. The aim has to be a gamut of roles for wherever people are on the spectrum.

And as a father to a ten year old boy with autism, I feel a contained kind of fortunate. Isolation and survival was the reality for anyone associated with autism for generations, surrounded as they were by wave upon wave of prejudice and discrimination.

We’re hardly the blessed, blinking new-borns lucky to be alive in enlightened times. Awareness and indeed rights – adults’ especially – are at baby steps stage at best. The world of work is no longer swept under the carpet, but sweeping changes aren’t afoot either.

Nevertheless a ‘War and Peace’ thank you letter to historical figures and campaigners and teachers and parents is definitely due. Where they persevered, I’ve found progress. The idea of neurodiversity, with its head now above water, may not drip transparency, but it is awash with optimism.

Which has contributed to a profound development in me with the way I see Isaac. For so long, my focus was short term, day to day. A subtle splinter into daydreaming is now occurring. Daydreaming about the future. His future. A consideration of his life beyond childhood without the shudder. A peep through my fingers. More a squint than a gaze into tomorrow. But hope is crawling out of hibernation.

That’s not to say I don’t and won’t carry on to view the world as a disobliging place. This emergence of neurodiversity is not the divining rod to an autism-friendly, potential-maxing world for Isaac. So many social situations involve taken for granted chucked-in-the-air changes (people present, layout of a house, what’s on the agenda) or intuitive etiquettes. Like the weary boxing coach with a rag bag or winners and losers I must accept that from time to time throwing in the towel is par for the autism (assault) course.

Yet endeavour by employers and even policy makers has enabled me to pull focus a little. See his many abilities and sharpen them into, if not ambitions, then definitely something you could articulate as a skill set.

And speech and language is a great place to start. A distillation of his school’s recent report in this specific area does the necessary diagnosing of the work required. His attention and listening demands work as does his receptive language – any busy, disjointed environment means a dizzying vicious circle with obvious consequences. Equally, his expressive language can rapidly expire, impacting interaction further. The narrative therapy he has at school, including visual aids and the ingenious one-on-one den building with school mates, is surgically helping.

A brief awareness of this by anyone interacting with Isaac means adjusting is no hardship. Shorter sentences, pauses, prompts, a side order of common sense can be the cajole into communication magic. Cue a phalanx of possibilities. A CV of sorts. I imagine in years to come him thriving in situations where a smoother collaboration, room to breathe, respect and simplicity are valued.

Right now, close family provide this apparatus for Isaac and relish the rewards. Like at a recent sleep over (without us) he’d had where his beautiful cousins, who fit themselves cashmere glove-like around him, joshed and jumped around till the firm bed time; that the law-abiding Isaac insisted upon, with no talking apart from him “doing train, but I promise not too loudly”, his night time routine, reciting the entire Jubilee line, embraced by all.

It was a triumphant occasion, something unimaginable not so long ago. He wrote the rulebook for the night and we didn’t deviate: as we departed he requested that I give his sister the “best hugs and kisses” when I put her to bed at home. He assured us his auntie would “have appropriate clothes on when she wakes me in the morning”. There would be “no pictures on social media because it is all personal information, daddy” but we would be able to see them and “please, I’d like to airdrop them in the morning just to my iPad and no one else’s.” There were more soundbites, each as charming, sincere and idiosyncratic as the other. All very much, “brand” Isaac.

There is in fact so much to savour with his speech and language. Isaac’s unreconstructed language is part of a bigger, brighter picture; the arrow through all of his actions. It’s unique; under developed in some ways; overly imaginative and intriguing in others. Funny, unpredictable, pronounced, formal, crazily literal. The detailed deliverer of his jaw-dropping feats of memory magic.

I’m reminded of the words of the late AA Gill, the exceptional writer, with his own reading and writing challenges in the form of dyslexia, who gave this advice to people with any atypical communication abilities:
“I told them this was their language, this English, this most marvellous and expressive cloak of meaning and imagination. There is no wrong way to say it, or write it, the language couldn’t be compelled or herded. There are no rules and nobody speaks incorrectly, because there is no correctly: no high court of syntax.”

And Isaac’s expressive cloak lies in his blend of description, memory, recital, honesty, humour, emotion and more. A merge of the written and spoken word – whether in an instant message, recorded, dictated or with self-enforced eye contact. It’s spellbinding and we all want to join in. It’s the fulcrum of Isaac’s future in a more understanding universe.

Especially with Isaac’s new declaration that he wants to be a train driver when he grows up. A concept too abstract for him to date. And certainly not a typical kid’s fantasy. This is real, thought through and serious.

Understandable, too, because the train trips trundle on. Where he’s at his most awe-struck with an appetite to share and faculty to evoke. Where once we had a distraction, a uniform and repetitious pill to still (or so we thought) now we have a passion, a hobby; a platform to learn, discuss, elucidate and more.

Just ask, his (non-train loving) grandfather whose seven (7!!) hour train trip threw up such linguistic gems as:
“I’m getting over excited, I may need to calm down. Have I ever seen a train being held behind on the stable sidings like that? Wait a minute! And on the northern line!”
And, after an encounter with a guard at somewhere as “wonderful and full of heart” as Greenford, he sent me a picture whilst enthusiastically scribing:
“This is the train driver’s key. He gave it to me. It is precious. You can drive a train with that. Now he has a spare key. It was a special present.”

Or listen to his aunt, who, wintery, wet and wondering what she’d let herself in for, loved his logging of trips, careful camera work, and flabbergasting memory – “Look Isaac, that train has twins on it,” “ah yes, Auntie Lauren, like the twin cousins who I visited on April 16th 2016.”

And take a peek at his YouTube channel of train trips made. The descriptions of journeys and stations – accurate and immaculately spelt – talk of terminating, departing, arriving and more. Embroidering the granular with a whole layer of language that lights these prosaic – but beautifully personal – clips.
Whether he comments on A Very Rare Thing Happening on the Northern Line (the display had pixelated) or that Everywhere You Look Is Pink On The GWR part one of two (a garish advertising takeover), the unexpected detail and phraseology is a pleasure. The shortest but quirkiest description of just the platform will also raise a smile: A Little Curve at Leicester Square.

Train stations have even become destinations for burgeoning, independent and authentic friendships. “Hey little fella, my name’s Billy,” greeted a boy not much older than Isaac, at a dusty North London train station, “do you like trains too?” A formal 1950s introduction and name swap between the two followed. “Billy, what’s your favourite line, can you tell me please?” enquired Isaac. “Have you seen Geoff Marshall’s films about the London Underground?”

Time with trains is Isaac’s internship. What they conjure in him in terms of communication and creativity is so special. A neurodiverse world will nourish this. Driverless trains and algorithms feel a bigger threat to Isaac’s future working life than him being understood or celebrated. And knowing how he takes to tech, that’s fine by me.

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Tech talks

People. Isaac so often relishes them, yet so rarely relates to them. It’s one of the crueller features ascribed his autism. A skills shortage in handling that pesky, unpredictable species we call typical human beings – that belies a deep desire to communicate, be part of, socialise and interact.

He pines for a person’s presence and playfulness; yet is left startled by their byzantine body language; facial expressions and subtle emotions are a foreign dialect. Who smiles when they’re sad? When someone is wide eyed, are they joyous or on the verge? How can a stare be amused or angry? The face fibs.

Human behaviour has unwritten rules set in stone by the exacting standards of instinct and intuition.  Things unsaid, reciprocation and interpretation. Sarcasm, shades of friendship and physical space. To touch or not to touch. How, when and whom to hug. So much human interaction is horribly vague for Isaac. The irony being that the nuance and specificity particular to the unwritten rule evades so many rule-aficionado autistic people like my son. If Isaac’s mental rulebook is indelible with logic, the chapter on reading people is in invisible ink.

The dissonance between intent and inability plays out most sharply at playtime, or any unstructured kid zone. Where free play and frolics jar with the unbending Isaac. Coldly articulated as emotional and social delay (two traits he’d perhaps over index on in a less constrained, less judgemental universe) Isaac’s behaviour means he is swift to flat-line even in the confines of his specialist school environment (and especially not in, for example, a raucous ten year olds’ party, should, on the rare occasions, I nudge with all my hoard of strength, caution to the wind). He knows he wants to befriend and have friends, he’s not entirely sure how. He’s forever seeking connections, picking people out, willing a love in.

But once he makes that tentative step from solitary to sociable play, he can hit the wall. Isaac’s blunt negotiating can be an incursion into that loose but intricate web of a social setting. His thunderous approach tramples over chit chat, codes, school japes, the benign jostle, the impossible-to-describe mood and ambience (the old – Woody Allen? – quote about analysing humour is like dissecting a frog can be applied to analysing how people mix, gel, have chemistry; you lose the frog).

He’ll pull and push too much. Squeeze instead of share. Misread rapid wordplay between pals. Not take turns. My 4 year old has a comparative fluency in this untaught but universal suite of physical language and everyday expressions. These faculties flowed into her barely noticeably. Yet whenever I see her make an effortless gesture, comprehension, reaction, whatever, my heart races towards a dead heat of relief and regret.

Back to playtime, his self-control goes into exile. He becomes crotchety quickly. Sensory and physical problems sour things further, his need for stimulation making the squeezing that bit tighter. His low body awareness dulling his physical space-nous even more. Noise and brightness, as pointed for him as shards of freshly snapped glass. Tears, discipline, angst. Daily I’d imagine. But things rectify quickly. Supervision smooths things out, in and out of school.

Indeed, these types of experience suggest just a snapshot of his wider existence. They’re poignant but transient. Time spent with his ragbag of autism-very-friendly cousins witnesses a magnetic social presence; won over as they seem to be by his charm and unconventional collegiate approach. They adapt, allow, absorb his controlling ways; enamoured by his honest and heartfelt love for them. Perhaps this is that less constrained and judgemental parallel universe.

Not being in possession of the innate encyclopaedia of unspoken language and behaviours weighs heavily though. Somewhat selfishly on me too. When glum, I wonder why a chunk of this human skill we take for granted has somewhat evaded Isaac. After all, accessible academic text of the moment, Sapiens, by Yuval Noah Harari, suggests our abilities to cooperate and to understand social structures, to interpret interpersonal relations, started tens of thousands of years ago. Really? Not for everyone I’d fathom.

Yet, yet, yet. Progress is being made. Phenomenal progress. Social skills are high on his school curriculum. He’ll proudly, breathlessly, deliver a gold star day – chapter and verse:

“I didn’t pinch my friends today at playtime, I got over excited but I was able to control myself, it was hard but I reached my target. I helped another pupil not be angry in the classroom before assembly. Then we had lessons, in English we were happy and told stories…”

The method of slotting something not so natural, like socialising, into a something ingrained, like his routine, reaps benefits.

Of course, the role of language here cannot be understated – there’s an over dependence on it but it’s a blessing.

It was not always thus, what with his tardy and atypical language acquisition. The word by word, sentence by sentence, need to learn-it-all and say-it-all approach. There will always be something of the revision obsessed GCSE language student about him, labouring over translations, the walking, talking textbook. Announcing, scripting, regurgitating.

And I adore his formality of speech, his eloquence of elaborate over explaining. It’s the cornerstone of his memory. Facts wholly logged into his database, processed, then ready to be spat out at any time.

Yet this tendency to be literal; to use learnt phrases. Does it also represent a struggle with the spontaneity of language? Is it, in fact, a compensation for his lack of those linguistic gymnastics that ease sociability and act in a similarly illogical and contradictory way to facial, bodily language and the like.

Very, very likely.

Isaac is the pushy street seller – desperate to hawk lovingly curated titbits of knowledge (music, people’s birthdays, trains) whether you want them or not. Sheer semantic force elicits an approval, a logical response that’s as reassuring as it is uncomplicated.

He now knows and remembers everyone in his universe’s date of birth and age. Many, many people, much detail. And it’s always an urgent process to ask, confirm and remind.

“Papa Paul was born in 1933. He is 84 years old. Is he old or can he still run?” Or someone else, may be younger but not as sprightly, his device for managing the ambiguity of whether people seem their age or not, being whether they can run “or have a stick and therefore are old but not dead”.

Whether reported to me or the actual recipient, this one way alley of information is controlled by him and, whether answering a question for the first time or confirming for the umpteenth time, has a clarity he can comprehend. He can read if we are impressed by his knowledge, or engaged by answering a closed question.

While these parameters serve a purpose, proving his resourcefulness and abilities, and are his glue for social interaction, they have their limits; they become too self-serving. We seek an alternative, a way of improvising away from his script.

The long winded specific language and the miss – or non – read of human communication, over feed off each other. What Isaac seems to be demonstrating is how hard just being instantaneous is, living in the now, that everyday ephemeralness.

Which is why I am therefore thankful, hugely, hugely, thankful for the role that tech has started to play in his life. It’s filled the awkward chasm of confusion around communication. Genuinely, sensitively, intuitively. By humanising him in so many ways.

Smartphones and tablets aren’t screens that shut him out of sociability, they are the windows into a sociable world. Sometimes in the most unorthodox of ways:

Take Uber, that great, detested disruptor, the necessary evil. For Isaac, it’s so much more than a utility, it’s a loved enabler.

When we get what Isaac labels “the Uber taxi”, his world widens from the moment the time starts to tick on the app, the map appears, the driver details make themselves known. Driver’s name clocked, registration noted, countdown for arrival commenced. And then, in we jump.

“Hello Dervis, very nice to meet you, are you having a nice day? Mmm, your car smells lovely. I will put my seatbelt on then we can leave. Thank you very much.”

Greeting an Uber driver by his name never fails to elicit a wildly surprised but utterly genuine – utterly interpretable for Isaac – smile and appreciation. A connection is made. The atmosphere is warm, Isaac knows it. He has initiated this unexpected interaction. It’s kind of beautiful, calling an Uber driver by his name – try it.

Naturally, every Uber journey he’s been on, when, where to and from, and the driver’s name, get packaged up and parked up securely in his brain.

My Son Isaac tech talk

Then there are the filters, face swapping apps, emojis: in yer face – literally – exaggerated but truthful and funny visual languages. These form his daily diet of sumptuous silliness that simplifies his world, his take on people and things. Tools that far from swallowing him up, make him sweat with laughter. A catalyst for chat with us the shared screen, lowering the boundaries of opaque human speak, and streamlining his use of language to be more relevant, contextual and concise. Win, win.

For the first time recently, I saw him sit with a child his own age, who he’d just met, and bond through the apps. They take the sting out of over stimulation, free him from being too physical, and he eases up on the verbiage. Before, when a relationship may have ground to a halt, the power of tech now means it steps up a gear.

Such sessions, when successful, end in his talk of the day being “a laughing day, it was so funny. My eyes are wet. Can you wipe my glasses?”

Finally, onto messaging, texting, WhatsApp, whatever you want to call it. On an almost preternatural plain, we, as ‘neurotypicals’ – myself and my wife – have become more measured, sympathetic and considered ourselves, whilst Isaac articulates and communicates so much more openly. My wife messages with him, one on one, via devices, when not together, or even when in the same location. Freed from the congested roundabout of conversation, distractions flying, obstacles everywhere, he can pause, think and opine, in his time, in his space. With emojis to affirm his feelings he can nuance, “I’m a feeling a little happy today mummy, now I’d like to be quiet.” He’ll ask, “How are you? Can you tell me who your pupils are? Have you loved your day teaching today?” He’ll, at times, tell me, “We don’t need to talk any more. I’m playing with Tabitha now.”

He can manage processing and responding, liberating his emotional intelligence and expressions. By her own admission, my wife is having conversations with him, the like and gravity of which, she’s never had before.

Tech adds and complements. There’s no tweaking of the autistic traits that make him him. Indeed, tech in the form of the IPad has deepened, made even more immersive his singular train love. Making films and categorising. Time lapses, slo-mos, titling. Epics or documentaries. He arrives at the Jubilee line ready to shoot, and his greeting to it is anything but typical:

Unabashed, in raptures, he’ll broadcast:

“Ah yes, hello Jubilee line. It’s my lucky day. I love you and can smell it’s the new refurbished trains. Oh yes, I’m so happy. I won’t film people I promise.”

The technology key to his hobby, the happiness visceral.

Technology in all its guises is a major thing. Just not everything. However critical and crucial it is, it will never be a crux, only a catalyst. As he says:

“I’m legal to watch my iPad. Not the whole time though.”

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Seeing into the future

An empty day fills Isaac with the fidgets. A long weekend on the horizon, and his internal mind map mutates into a desolate landscape; where boredom billows and unknowns pounce. Anxiety begets a whole heap more anxiety.

It’s because struggles with social imagination (imagining anything outside one’s immediate daily routine) are an autism reality. Where a lack of concrete plans crumbles a layer of inner calm. It’s a diagnostic feature; the neurology backs it up; observations offer proof.

Be it in the near – or not so near – future, Isaac’s ability to visualise any abstract situations appears so blurry for him it agitates. Too vast the vacuum of plans and he’ll spin and spiral into a vicious circle of fretfulness. Where his need to unpick the unknown triggers a restless trawl of his planet sized memory. If the coming free Saturday in May is a villain, robbing his mind of a yearned for certainty, he will seize the identical day and date from last year (or the year before). Before in his town crier tones, he’ll pronounce the urgent news from the isle of Isaac:

“In May two thousand and sixteen, when it was my cousin’s birthday, the cat was in their house and I was too. I don’t like silly pets.”


“The Bakerloo line screeches with a noise that’s not nice. It hurts my feelings. May the 16th in the year before this one was not a brilliant day.”

His heightened state will have sent the synapses searching and clamping on emotional memories like these – emotional memories being enhanced in the autistic brain, aligned as they can be with sensory issues and confusion.

This memory of Isaac’s. Sometimes the supercharge, the magic power, the zoom, to his dynamic mind. Sometimes just a mass of excess baggage, the old banger he tentatively tows behind him wherever he goes, spluttering, slowing him down.

Though maybe not as much as it once did. And maybe his internal imaging of what’s round the corner is less foggy. Isaac’s intensive education includes a focus on social imagination, with social skills and narrative therapy critical components. Further affirmation that Isaac’s own future is populated with potential.

The malleability of his mind is forever massaged. Meaning mechanisms to cope for situations devoid of detailed planning are proliferating. We, and him, challenge ourselves to not have everything in lockdown; loosening the levers we have to appease and assuage his anxiety. My wife will navigate him through his visceral despair that the diary has gaps he can’t plug, to a calm but unexpected place; concurring he may say, “yes, ok, we’ll just be at home, and have a relax”. It’s a slow, deliberate process. It works sometimes, it spectacularly fails at others. But there is momentum. We plod on.

The calendar is catnip for Isaac of course. Its symmetry, spaces to fill, order, all fodder for his voracious mind map. How it plays out in his mind is both mysterious and marvellous. I can ask him a question –with no calendar from any year in sight – what day a date in the future might be. For example, I’ll speculate a date, say, September the 15th?

“That’s a Friday. I know because I have brilliant technique.”

How I ask him is crucial. Simple, quick questions that call for simple, quick responses can be knotty for him. Such are his processing, and responsive language challenges (forever being developed at school naturally). A meandering approach to eking out answers, beckoning him in, and the magic of his mind will sparkle in this way. If he’s in the mood.

Yet there has remained an entrenched fuzziness to how Isaac sees – or doesn’t see – one unavoidable aspect of the future. Creating a year round buzzing wasp in our periphery that may sting at any time. And that is the expanse of school holidays that will always be hovering on the horizon. What will happen in them? What to do? Whenever he ponders them, it’s as if the rest of the year we are in a holding pen for them, and the uncertainty and (potentially catastrophic) concern that they’ll inevitably import – and perhaps wreak.

Over the past five years, the finality of the school year – how it’s executed, how it exists – has in the main been brutal. One day to the next, the sense of stepping off a ledge.

Now, there does seem to have been a slight softening; the edge is evaporating. In fact, this last holiday seemed to spell the emotional alphabet of Isaac’s well and not-so-wellbeing – previously there would have been a skew to the latter. The fallout from full days followed by less full ones actually coincided with a rise in resolve by him. Resolve to manage himself and regulate the psychological upheaval. Resolve to validate the voids. And it came most notably in the form of his enhanced love, and unrivalled knowledge of, the London Underground.

So you could say there has been a double-edged sword to this slicing of holiday anxiety; what with the tube being tinged for him, and us, with a degree of regression. The London Underground network has provided a protective pathway for Isaac for years, from the rhythmic repetition of journeys, to the sensory cues of stopping and starting, doors closing, gaps minded, maps memorised and so much more. The fear being further immersion in it can be further self-alienation from real life.

However, what has been novel, is Isaac’s utilising his tube train and station expertise as a panacea for times of stress like holidays – that’s felt purposeful and productive. There’s a sense to his scholarship. Transitioning from term to holiday witnessed Isaac turn to the tube for quick fixes to quash apprehension. The language and meter of the London Underground soothing him like perfectly fit Tupperware lids. His mental beeline making for the closed questioning tube map mindset; the mindset he hooked into in high octane fashion as day one of the holiday hit.

Indeed, on a daily basis, minutes turned to hours as he (solitarily) vocally reproduced the Jubilee Line. Making its unique sounding rolling stock beats, pitches and sways, muted his need to verbalise his distress at holiday nothingness, to complain, to control to not compromise and more. Aurally and temporally accurate, he virtually voyaged from Stanmore to Canary Wharf.

Other free time was snapped up perusing arcane train manuals, watching, rapt, homemade YouTube clips of tube journeys by like-minded hobbyists, and steering all chat in the direction of – as he articulates adoringly – “Frank Beck’s 1974 tube map – a design classic based on an electrical circuit diagram.”

The strategy for success, which my wife has in abundance, was making these daily domestic tube sessions finite. Come up for breath from stifling underground sessions, and he can be open to spontaneity, variety, sociability. He’ll be obstreperous on (many) occasions of course. But there was a definite freedom and liberation to the holiday. Bits and bobs done, people seen, places visited, relaxation achieved in the face of non-specificity.

Nothing beats leaving the house and turning his virtual tube world into a physical one. Beholden to too regular a train trip is unfavourable though. And locating an end to the means is important, not just a means itself. Journeys will always be wonderful for the patterns accomplished, connections made, signs read, senses satisfied. But during the holidays and beyond they can be a more positive experience by adding texture. Alighting for sightseeing, finding places to eat, whatever. Also there is his drinking in of the more obscure features that reside underground – tentacles of track, engine numbers, engineer updates. And on and on.

Moreover, the London Underground spawned a new enthusiasm for Isaac. Photography and the subsequent cataloguing, recalling, showing, memorising. Of logos, seat patterns, signs and selfies. “These escalators are wonderful, can I take a picture of them daddy.” Cue close up of, well, you know what. “The roundel is a logo to me, perhaps a photo of it will be a nice thing before the train arrives on platform 3 southbound.” Capturing such sights signals a new pictorial journey taking shape upon a well-treaded tube journey one. There’s a degree of beauty in the whole experience.

This discovery is not the most far reaching, but his passion remains undimmed. Sameness and predictability always rules on his missions. He’d forever favour groundhog over Phileas Fogg – 80 days round the London Underground would be a winner though.

Something conspicuous by its non-appearance in this article is that more bracing dimension of school holidays: actually going on holiday. This is primarily because filling time at home during holidays is not just the first hurdle but the whole host of hurdles that pepper the autism turf of empty days and all they elicit.

We did have an aborted week in Cornwall in the last school holidays however. It didn’t make the edit of our lives though; erasure triumphed. Whatever the parametrically-opposite paragon to symbiosis is, occurred: our downbeat demeanours at basic accommodation, rain and tedium ravenously feeding his distress at stray animals and dogs off leads, gulls flapping. Experimenting with a farm stay where cramped feeding trips in tractors, chaotic smells and sounds and raucous kids, a sensation of closed and impending claustrophobia and scruff. We all jumped on and off vicious circles of disappoint and downheartedness.

Real, planned breaks away will earn a place in the diary, alongside the scarier empty, stretchy days. Starting this summer with a resort booked abroad that already means pictures to look at, facts on the destination to study, an airline and airport we can contact, departure and arrival dates to be logged. All in all, it may have a less challenging effect than the days at home. Maybe. (Best ask me at the end of summer though.)

Right now, we are currently absorbed in the residue of his photography hobby and as summer holidays beckon, it hopefully will stay. It keeps him busy (beyond tube journeys) and is a weapon that withstands the rigmarole of life. He extends encounters with people, fills time, taps into creativity. Most brilliantly, perhaps it acts as a magical filter through which he can paint a clearer less obtuse vision of what’s in the future. A narrative aid, a self-authored picture book of his life. Helping make his world make a little more sense.

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Isaac’s new hobby is music to our ears

“Daddy, Eric Clapton is not a great man.”

It was one of Isaac’s straight-faced sirens-to-attention. Sincere and serious. Thrust out of thin air and declared in his testing, testing 1-2 1-2 cadence.

Before the resolve to this big sweeping statement:

“He sings a song called cocaine that also has the word cocaine in it. It’s only for grown-ups. It’s not a nice word. It’s not appropriate. He’s not a bad man. But he’s not a great man.”

A spraying of logic, staccato style. Stunning me into conversational barbed wire, with nowhere to turn. As is often the case after something unexpected like this, Isaac then commandeered an arbitrary way out (on his terms). Controlling the dialogue with quick-fire cause and effect questions:

“Does he live in London? What’s your favourite song that’s not for grownups? Leila? Is that sad or is it soft music? Is Eric Clapton still alive?”

My predictable responses give him his dollop of dopamine. Truths he knows, facts borne out of repetition that offer reassurance. The same questions he asks over and over; his solace from anything unforeseeable.

(How do we wean him off this incessant (irritating if I’m honest – sorry) and recurring behaviour. Can we? Should we? That’s a question for another (every) day.)

But what of that humdinger of a sentence that posited the greatest guitarist of his generation may not be great after all. Unambiguous facts constructed over time in Isaac’s head – about rude words, children and adults, song titles, fame – have concluded with this delicious super-rational statement. One that could stick with the saliency of bullet tested advertising line. Off kilter whilst veering not a jot from veracity. At once bafflingly lateral yet undeniably logical. His neutral, perfunctory delivery spicing it up with sublime humour. Let’s hear it again: “Eric Clapton is not a great man.”

Isaac’s not short of these gems that don’t so much punctuate his predictable prose as pierce it. But short of shadowing him at all times, ready to scribble at a second’s notice, I can’t hope to capture each one. In fact if I attempted to, I’d mirror him in his obsession to log events in his daily journal. Where he perfectly articulates and executes hundreds and hundreds of words of small, highly accurate details about his day (as opposed to précising a big picture). Another day, another chapter of exact dialogue at numerous times of the day, what he’s heard, what he’s seen, everywhere he’s been. We’re on chapter 63 now and, quite literally, counting.

Half perched on a chair, head cocked and squinting at the computer screen, rapidly typing with one hand, Isaac coheres physically and visually the disconnected components of his space with the delicacy of a torn up newspaper that’s been hastily sellotaped back together again. His dyspraxic compensation.

And there, as he concentrates and crafts, he resembles a court reporter tap-tap-tapping the minutiae of a case. The minutiae of the day being the major feature of his testimony that’s for sure. And my how I adore him reciting his new chapter from his journal every evening.

Whilst not in possession of these transcription and memory skills, I do subconsciously stockpile the particularly sparkly verbal festoons in the aforementioned Clapton mould. Another:

“Is heaven a planet?”

Parental platitudes about going up to heaven together with some embryonic astronomy have led to this? Possibly.

And a different take on the thorny theme of mortality:

“George Michael had a fragile heart as it has broken. Did he not eat vegetables? It’s a bit of a shame he died.”

Sayings absorbed, interpretations made, heartfelt emotion accessed. Resulting in vocabulary that feels both coldly constructed and warmly caressed. And uniquely Isaac.

Eric Clapton, George Michael, many a musician make up Isaac’s lyrical maxims. Which isn’t that surprising, what with the background (mid and foreground) music to Isaac’s life being just that right now. His need to nourish his musical nous can never be tempered.

Of course, his autistic mind has to march to a militaristic beat, so what he listens to where and when is bar coded. Before bed it’s MTV Rocks; in the car it’s the contradictory seductive and grating sounds of Smooth FM; out and about, wireless permitting, Spotify, the never ending virtual songbook.

Music is his all senses-satisfied playground. He’ll settle gently on a genre before hopscotching to an alternative. Then back and forth and sideways. Data gathering all the way. Song learning. Band members, their details, all failing to fill up his unassuageable appetite. Everything meticulously memorised. From the Stone Roses to Rolling Stones, Elton John to Elbow, Bobby Gillespie to Bob Marley, Luther Vandross to John Legend, The Pogues to The Prodigy – that’s just some alliterations I’ve plucked amid the A to Z.

One question that Isaac always asks during musical musings is whether Paul has worked with said artist; Paul being a music producer and song writer friend of ours. I often don’t know the answer, but knowing Paul as I do, err on the side of “yes, probably. But write to him to find out.”

The subsequent long letters from Isaac that only really seek monosyllabic yes or no responses are diligently replied with interesting – indeed iridescent – information. For example, despite not having worked with Oasis, Paul reports that as a very young man he was making tea when Oasis penned Wonderwall. And Isaac also learnt that Primal Scream were getting some production panache from Paul whilst Isaac’s mummy was in hospital giving birth to…Isaac.

Harbouring this human link to music has helped Isaac’s social skills for absolute sure. A friendship with Paul as well as the adoption to his musical mind armoury of less concrete, more conversational, narrative ‘stuff’ that pampers and personalises his explicitly factual knowledge.

And all the time, Isaac’s unconditional need to tell us back everything he’s absorbed from all musical sources mentioned (often via those closed questions once he knows we are in possession of the answers). Softening the rile of the regurgitation, for me, is the possibility of the dexterous linguistic detours that I’ve been talking about – Isaac semantic smashers that stop and squeeze you with a benign but bear like hug. Another: “David Furnish is married to Elton John so that must not be his name, he must be called David John.”

This Isaac. With his musical interests and diction-to-die-for in gale force flow is something to go with. Our journey has, is, and will be, anything but plain sailing. Coasting on castors, laid back parenting it isn’t. Nothing is linear. But when (for an hour, a day, a week, a month, time’s fluid at best) the handbrake turns an unexpected corner like this, there’s a free-wheeling, wind in the hair, rapture to the parenting ride.

Further embroidering this experience has been Isaac’s ever flourishing singing voice, melodic and beautifully choral, thus ramping up my dad jubilation to 11. Yes, it’s his sleep companion and handy stress release mechanism. It’s also his talent he’s started to share, that expresses, emotes, and spreads delight.

But with this parenting rush racing headily, always comes the risk of a pivot, a pot hole, a jolt. The auguries to any event around the corner always possess a degree of dread when autism is involved. How one handles them can best be quantified on an inner-self continuum of calm to catastrophe.

my son isaac singing

I was relatively calm contemplating Isaac’s recent school show, coming as it did during this magically musical time. Such is Isaac’s school’s celebration of, and tenacious sticking to, the concepts of difference and inclusivity and individuality, his music teacher had helped him create and rehearse an extraordinary piece. A performance, to accompanied bongos and light-techno backing track, of the 1990s Swedish Euro Dance aficionado Bass Hunter, ‘Now you’re gone’. It being from the dance, electronic genre, I imagine Isaac’s Spotify sessions had sourced it; the school obliged, encouraged.

Behind his bedroom door I heard him sing and practice. School sung his praises about his rehearsals during music class. Engaging Isaac on it would lead to evasiveness on his part as ever. But with such a foundation in place, with the time and date set, I erred towards calm over catastrophe.

And on the day of the show, from nowhere, a blanket refusal. An empty stage bar from the intro to the song on loop and a large projection of Bass Hunter. Lights, camera, no action. The ambience possessing the sorrow of a Pinteresque pause to proceedings. Any discomforting whispers in the audience barely muffing Isaac’s off stage screeching and shrieking of “I’m not doing the stupid Bass Hunter. It’s rubbish!!”

Nothing, no teacher, no parent, no persuasive elder pupil, would get him up there. No one had a clue why, or has since.

A little discombobulated, we all departed after the show. However sensitive, any mention was met with silence, or responded to with a different subject. Isaac showed no signs of regret, sorrow or ‘missed out’ syndrome.

Sympathetic teachers reassured us, emphasizing that the elaborate as-if-for-real dress rehearsal had been superb. And when I saw the clip they’d filmed of it, I was so bowled over I bawled my eyes out. Sung beautifully, funnily, extravagantly. Dancing, comic dancing. In the mic, pumping out the vocals, playing the crowd. Truly, honestly, beyond my wildest dreams.

My wife tentatively showed Isaac the clip. He smiled and enjoyed it; in a low key, ephemeral, don’t-need-to-revisit kind of way.

And that was that. The music plays on in our house. Isaac propels, reverses, stays still, propels. Sometimes all in a day. The speech is as eloquent and unexpected as ever.

So at this point, things get selfish. (Limiting my complete despair, the show had started with Isaac performing the narrator role in a wacky interpretation of The Hare and the Sloth with aplomb – except for distrust of the audience’s genuinely loving laughter, and not wanting us to look at him, so he’d hiss “stop staring” at us in between his lines).)

I can’t deny upset at his rejection. The chorus of empathy from parents of typical children connected with me for sure. All children rebel, show stage fright, are defiant.

Still, I’m sad. Still, the outright, impossible to remedy refusal seems as much autistic as not.

I’m not seeking to cauterise any confusion around Isaac. There’s just an acknowledgement of befuddlement. Where, sometimes, does his behaviour, feelings, expression come from? Will we forever feel the farrago of what are and what are not autistic behaviours?

The out of the blue nature affirms the complicated colour to our lives. Both in his impossible to predict actions like at the school show; but also with the wondrous Eric Clapton type phrases and blessed way of interacting with us and the world.

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The little sister who’s teaching us lots

The everyday lexicon of parenting has seldom spoken to me. Rather than chiming, the toddler-and-beyond truisms would detonate my brittle mind. “They grow up so quickly”, “she changes all the time”, “such a little chatterbox”, “blink and you miss it”. Being utterly unable to relate riled me and filled me with fear. Resentment would latterly rear its head, through the nursery and early primary years. Maybe it will always ripple ever so softly.

I imagine as Isaac progresses, the conventional parent chit chat will continue to gain little purchase; it will always sound more other tongue than mother tongue. Sleepovers and shenanigans, peer pressure, moody pre-teen; the offstead opining and turbulent sports trials; holiday camps, the haranguing and the hanging out. I might take the odd gulp, attune as I am to how different the sound track to our life with Isaac can seem. I may well be prone to ponder that put crudely, but kind of correctly, autism could amplify the more harrowing dimension of all this dialogue – puberty, adulthood, independence, the big, wide world. Another gulp.

In the main however, I believe in Isaac and his autism with my every fibre of being. Which means never ceasing to symbolise his difference, his otherness, his uniqueness, in the most dynamic, shining manner. What this does – and will always – mean is a mental resilience to refract fleeting temptations to relate (or not) to other people’s normality.

In reality, I can’t retain this resilience all of the time. Sometimes this mindset I’ve cultivated of a dedication to difference gets turned on its head. When I can’t help but listen to everyday stuff and compare to our journey with Isaac. It can leave me somewhat bereft, weighed down with what-ifs. Witnessing care-free kid activities close at hand can upset me. A picture, a social media post. Holidays packed with adventure and spontaneity and exploration. Typical, run of the mill stuff, effortlessly, chaotically experienced by so many. A world we don’t reside in.

And there’s been one such bit of ‘everyday parental experience’ recently that I’ve been forced to acknowledge in relation to Isaac. Something too close to home to ignore. Initially stark, subsequently maybe not. It’s been quite a force. A force of a filial nature:

Isaac’s sister, Tabitha, turned three and four months. Precisely the age that Isaac was diagnosed. Her typical behaviours so blanketly at odds with his at the same age; our experience as parents, the polar opposite. My vivid recollections of Isaac can’t help but vie with my current observations of Tabitha, a typically developing child.

The exhaustive year up to Isaac’s diagnosis I’ve talked extensively about. The crazed concern I felt in my marrow; the relief but realisation of something fundamental as the diagnosis was made; the daunting dawning of this new life with autism. If Isaac’s diagnosis felt like the ominous shifting of our universe’s tectonic plates, with Tabitha it’s more the universal spinning of plates associated with any young family (albeit with a time to time toppling of them). Such a contrast.

Thinking singularly about that time with Isaac will always burn like a fire. Learning the new language of autism strained and stressed: the rigours of routine, the speech therapy, the repetitive play. His limited social interaction needing unpicking and diligently putting together piece by piece, as it always will. Slow, deliberate, word by word, phrase by phrase, language acquisition was laborious and fraught. Seeing his sensory overloads in hyper real multicolour was torrid. Explanations alleviated our sadness ephemerally. Accessing the arcane services system took its toll; indeed, practically poleaxed by the process, if it wasn’t for my wife’s tenacity I may have tanked.

Versus, now, and our parental experience with Tabitha. This little, nutty, chatty, knock about girl amuses, annoys, shouts, smiles, hugs, stomps, moans. She dresses like a princess shrieking ‘Frozen’ lyrics, melting no-one’s heart but my own, waking weeping neighbours. She munches carrots and greens on the sofa, licks marmite from the jar, and yells, “No bed! It’s not fair” at ten at night. It’s exhausting and elating. In a simple, straightforward, binary way.

On the surface, as I say, two polar opposite parental experiences. Yet there’s so much more to these two parallel parenting streams. There’s a convergence occurring that’s edifying. The interplay of typical and difference.

I’ll start with something selfish, my confidence as a parent. The seething sense I had as a misunderstood parent has been soothed once and for all by the light Tabitha’s typicality has bathed on Isaac. Never have I felt so sanguine about my parenting skills. I now understand those parents (of non-autistic children) who tried, honestly but ill-informedly, to empathise with Isaac’s meltdowns and peculiar eating and slow developments. With no context, seeing solely Tabitha, I’d be the same. She can be picky about food, but confident choice giving by us and her diet expands, she’s cajoled. Like all kids, she’ll erupt, but we are able to fan the flames instead fuelling the fire. Autism in a non-autism friendly world will always be complex and challenging – and easy to mis-read if you’re not in it. I was doing the best anyone could do. I one hundred per cent know that now.

And if I’m wearing my parental pride like a gloating child garlanded with a gold medal it’s not at Isaac’s expense. Far from it. My pride in him propels by the day. Firstly, there’s the stuff he thrives on, thanks to his neurological difference to his sister:

“Daddy, because your office is northbound on Goswell Street, you can get the 143 bus to Archway and then 43 bus to Finchley Central and then walk to our home,” he responded instantly (referring to nothing other than, I surmise, his mind’s eye) when I told him my new office’s address for the first time.

And secondly, there’s the progress he’s making in everything he finds tough, because of the neurological difference to his sister. Everything from being able to loosen his literal learning, to chatting off the cuff.

For example, he has been harnessing his (awesome) ability to list literally dozens of band names and songs perfectly from memory, as a way of computing very basic things:

“The song by Bastille with the lead singer Danny Smith is called Good Grief. But the words Good Grief are not actually words in the song. And the singer’s name is different to the Band’s name, which sometimes happens. Like Chris Martin and Coldplay, and REM and…”

The facts, then, a catalyst for elasticising his literalness so he can decipher the slackness and illogic of so much speak. As well as being handy head-starters for him in joining the carousel of conversation that he finds so difficult to step on or off.

Plus he’s doing some nascent treading around more pertinent life themes:

“Nirvana died but there isn’t a statue because not everyone has a statue. Some just die and sleep forever. I’m a bit sad that Michael Jackson died. Noel Gallagher lives in London but the band Oasis are from Manchester.”

What appear to be non-sequiturs are actually ventriloquists for him making sense of big life issues – where people live, mortality, and more. All wrapped up with sociable intent. Him wanting to engage.

siblings_line_artOffsetting all this of course, is Tabitha’s world. The new normal for me.

There’s a flexibility, connectivity and versatility to Tabitha. That allow for a fluidity of movement, speech and general life. Where improvisation, shifting, adapting, reacting, are behaviours that simply occur. It’s apparent that even in its infancy, her language acquisition is so much more nuanced, malleable and multi-layered; further highlighting Isaac’s need for continued speech therapy alone.

She can accommodate the swirl and whirl to life that makes for a very human, meaningful and telepathic existence. One, of course, I took for granted before Isaac, before autism. The human condition in its most maddeningly impossible-to-define way. The to, the fro, the flow. Tabitha is naturally absorbed in it.

We can drop in on a kiddy disco, all bright, flashing lights, noise, copying dance moves, and Tabitha will take it seamlessly in her ever enlarging stride. Similarly, at ‘little kickers’ football classes, she scampers around an echoey hall, dribbling the ball, scoring goals, balancing, bounding, obeying orders.

Spatial skills, bodily awareness, coordination, sensory processing – issues and neurological abilities Isaac toils at admirably, but progress can be painstakingly slow. A raft of complexities (from taking visual instructions to imitating physical movements to fine motor skills) around everyday actions demanding years of occupational therapy.

Conversely for her, innate skills and cognitive abilities that seem to never stop multiplying. A mysterious osmosis informing her development, absorbing all around her. An immersion in her environment. The testing nature of transition between events not even a question.

One of those parenting phrases I’d previously abhorred – “she changes by the day” – is one I apply, ironically, daily. Picking so much up. Independence, curiosity, tangents to her sentences of 7, 8, 9 words and more. She infers and will summarise a morning at nursery.

Her filtering, editing, managing of space, sights, colours, shapes. Laying out clothes, learning to use a zip, putting things in their place. She continually, intuitively unifies her world. In a way that’s so abstract, often alien, to her brother.

The contrast is so acute. Only recently Isaac was carrying his big bag with a few books in and got edgy because he wanted to take his cap off. “Put it in your bag,” I nonchalantly said. “Can I daddy? Can I do that? Can I put my hat in my bag? Tell me please.”

Not only had it not occurred to him, it then seemed an impossible task. That his small hat would fit in his bag. The ample space in no way made sense to him in relation to his small hat. So innate, it’s deemed obvious. Yet complicated to the extent of nonsensical for him that he can’t access such a figuration.

If there’s not a degree of dolorousness I feel seeing – compared to Isaac – how Tabitha follows this path of expectedness, I’d be in denial. Much more powerfully, it serves a purpose as I’ve said, regards my parenting esteem and also adorer of Isaac’s extraordinary abilities. Put simply, comparison helps comprehension – of Isaac, of autism, of Tabitha, of typicality.

All in all, looking at Isaac through Tabitha’s eyes – and vice versa – has been less soul searching and more understanding. Ultimately though it’s been life affirming – because their bond transcends everything. For example, at the end of a (good) week, he’ll write a detailed letter to the family of his day at school. Heavy on detail, a not easy to decipher literal brain dump of what he’s been reading at school, comments heard, music listened to. And Isaac will bossily get Tabitha to read bits, to join in. They’ll perform.

At times, he may fume in her face if she gets too close or encroaches in his territory. Respecting his pleas for “personal space, Tabitha!” she has an almost mystical detection as to whether this is genuine. If she perceives his frenzied stockpiling of transport books is sending out serious distressed signals for example, she’ll decode that Isaac is “not happy, needs quiet time.” And patiently leave him be. Alternatively she’ll somehow know when to show stoicism which can give way to cuddles, “I love you Tabitha… do you want to play with my train set?” Either way, truces take place very swiftly.

Right now, there is a (behavioural and social) developmental alignment between the two of them in many ways. Watching similar cartoons, playing together, being creative together. Her a catalyst for his modus operandi of unabashed affection giver. No one kisses, strokes, says I love you, quite like my son.

Seeing Tabitha’s typical behaviour in relation to Isaac has liberated and lead my soul in an enlightened direction; with harmony the acid test. Sure there are pyrotechnics. (Anxiety, surprise, change, noise will always stalk Isaac, and he could retreat suddenly or react wildly or both). But it can be quite something when the two of them blend. Something symphonic.

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