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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