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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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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