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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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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