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.”

And:

“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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3 thoughts on “Seeing into the future”

  1. Just more illuminating each time! Wonderful writing Matt. Thanks as always for sharing your unique insight into your and Eliza’s nurturing relationship to a mind that never ceases to amaze….may it be ever thus xxxx

  2. I have now found all your posts and have begun reading through them. Your observations and style of writing is so enjoyable as well as informative.

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