“It’s a totally cloudy day, thank you, thank you!!” boomed Isaac, reborn in the middle of the road, arms aloft, awakened by the angels of the gloomy skies. Preaching, wailing positivity, religious, joyful, altered.  

“I’m so happy in this moment. At last, I can help my mental health and so forth. With this large cloud that I can see everywhere, I’d like to assume it’s a day for rain today too. The information on your app, dad, is not always correct but at 11am light rain may appear. Regardless of whether this is a fact or not, I will be wearing my hood.”

Whether the heavens open or not, cooling weather is heaven sent for this boy in the always-on hood. 

For Isaac, summertime and the living isn’t easy. This minor but massive lyrical shunt summing up his sound of summer. Like the tiniest of flies, terrifying and taunting him to despair.

It may be a super-human skill of observation, but it’s more his skin crawl of hypersensitivity that means Isaac will detect the motion and buzz of any size of fly in a split second anywhere in his vicinity. Hands clamped on ears like a vexed dad whose Spotify’s been teen-hijacked; eyes on the chase, darting this way and that; his whole head sent haywire with this one indisputable staple of warm weather and sunshine.  

Come the (evenly milder) hotter days, I get the Chief Inspector Isaac’s command to stake out a joint, with jumpiness only quelled if it’s fly-free and the window’s shut. 

Even then, at times, a random recollection of a fly can break into Isaac’s mind, set up home and gain squatter’s rights – way beyond what the poor fly’s life cycle would have been. A lamp shade where it once hovered, named George by us not so much to humanise as to de-petrify, will fix itself in his sights. With the stillness of a sniper, his focus pinpointed there and only there, Isaac will bemoan that “George from June the 13^th, 9.45 am, who irritated me when I ate scrambled eggs for breakfast – that were delicious, mum – was there, and how do I know if you helped it outside. How can I trust you, dad?”

The volume levels of wobbliness and irritation racked up in an instant, as he focuses in and in on an empty target. It’s why any room with the slightest chink of outdoors comes loaded with swats, sprays, glowing zappers and very closable windows. And it’s why cool weather is met with clamorous elation; when these enemies of my son cease to multiply at a rate that makes them ubiquitous, nor seek out the moisture of a home to hang in. 

In a botched version of writer Bill Bryson’s quote about the Australian fly, I attempt affinity with Isaac by acknowledging that “flies are of course always irksome,” but for him every single one of the 7,000 flies in the UK, “distinguishes itself with its very particular persistence.” 

It’s one of many symptoms of summer that, whilst neurotypicals may find tolerable, can be so, so troublesome for Isaac and his autism. Indeed, in what could be the season to savour, he must negotiate a series of booby traps, each specific and scary, with the whole even greater than the sum of them.

The pandemic’s pluses for Isaac include the withdrawal of our annual weighing-up-whether-to-holiday-near-or-far. The longer we don’t fly, the higher his mood. Going through passport control and security are phrases that threaten. A too invasive border guard having left its psychological handprint, forever recalled. Echoey departure lounges rattle long after we’ve left them. Sea and sand are scratchy, sun cream sticky, strange food as jarring as surreal art at real life exhibition. I’ve gently pulled the door to (for now) on the broadening of the mind travel theory. (Family dynamics and a sister who yearns for the sun are made complex; answers on a postcard please – from somewhere easy to get to, mild, quiet and squawking-seagull free).

Adventure or relaxation, Isaac seeks out neither in that conventional on or off the beaten track dream holiday cliche. On previous holidays, the offer, on a sizzling hot day in the Mediterranean, of delirious splashing in azure waters or a shade-less train station platform, is of the vegetables versus limitless chocolate variety. Sun beating down, expanse of concrete, filming an Isaac directed double-decker train film franchise is his plunge-in-the-pool sensory nirvana. 

Roaring trains batting away flies also, the lion’s share of his mind thus occupied with train delight. 

Anyway, with Isaac having made palpable his relative joy of staying grounded in the UK, it’s a second summer in a row that would always have a slim chance of suiting him. In fact, our UK mini-breaks that majorly break up the lengthy weeks offer new trains; proving to be “really the best time of my life, guys”. And regards holidaying abroad as life education, its ebbing possibilities worry me little; especially knowing that with each passing year how effective his school is at developing and stimulating his mind way beyond all (my) imagination. 

Talking of which, school, or lack of, could be the frontline of his summer sadness. We’ll always be fighting a losing battle, when he is “counting the days down to this last sad day of term, where I have no routine. School’s important for me!!”

Choking through tears, he speaks of the empty weeks, missed pals made for school and only school, as well as, little by way of timetables, planning and routine. The carefully assembled social structures of who he’ll see when and how and where get neatly packed away to gather dust for 10 weeks and it’s painful. A hiatus from “my mature conversations with certain of my friends I now trust”, social groups and dependable teachers is hurtful. Floating friendships, chilling and hanging, are too choppy for him. Summer camps with their set socialising ways too stressful. 

Heat, having touched on, stultifies him more than me, and its dotted line-ness to so much by way of sensory overstimulation, makes it rarely missed. So, this year’s drab weather is a welcome distraction. But so much transcends our temperate climate anyway – such as the natural move to out-and-about-ness that goes with this time of year. Where parks fill with family-not-fun of noisy scampering, crowds gathering and maddening. General boundary-less bedlam. And dogs. Out more, off leads, roaming beasts. 

The Baha Men’s anthemic “who let the dogs out” is my earworm. Its catchiness long since warped into a warning signal. Like a police car’s siren for a hyper alert criminal, it’s a pre-empt on loop. But I’m a beat behind Isaac’s canine awareness senses. He’s a 360 degree High Definition lens in human form. A telephoto perceiver of barks and woofs. Parks are a no-go before entry. And a thousand and one locations a trigger for his photographic time and place Einstein like memory. Any experience of an overexuberant dog is logged GPS style. With his emotional memory going nowhere. Each spot seminal.

Because dogs detonate Isaac’s demeanour. A fully fledged phobia that, with gallant honesty and self-aware-ness, he has learnt to articulate as something embedded in him; an encumbrance, the managing of which is essential for his wellbeing. 

The slightest flick through research papers shows Isaac possesses phobia over mere fear. Newcastle University’s 2019 Blue Room study acknowledges that 25% of autistic children and young adults are scared of dogs. The way the study describes this phobia is as if they’ve done a surveillance on Isaac and annotated it in the most exacting of terms:

It speaks of the avoidance of the stimulus and negative emotional reactions, negative verbal behaviour such as “I hate!”, increased autonomic arousal including heart rate as well as physiological stress responses like increased cortisol.

It’s so real and affects any stroll in summer, any step outdoors. Truth is, it’s all year round. But parks and beaches, proper summer constants, are one of those big booby traps.

How then, with so many justifiable reasons to loathe these recent days and weeks, has Isaac, in tandem to all the toil, managed to compose some sort of summer of love for himself too? 

I’m prone to go big when it comes to my observations on Isaac’s beautiful difference, what he’s taught me, his special place in the human condition. But somehow, he seems to be coalescing his consciousness around what psychologists call self-actualisation – an utter acceptance of who he is despite his challenges; whilst having a drive to prosper with single-minded purpose. It’s quite a position to reach.

In less scientific terms, but just as aggrandising, I can go Shakesperian, and quote something innate in Isaac that comes less naturally to most of us:

“To thine own self be true”. Pompous of me perhaps, and a modern interpretation, but who handled all humanity better? 

What’s more, while it may feel fanciful, watching the Olympics has been instructive. His dyspraxia, dislike and distrust of competition and sport (a big) aside, there’s something in the spirit, singularity, determination and endeavour that really resonates. Finding your passion and progressing. This purity will be even clearer during the Paralympics (the autistic swimmer Jessica-Jane Applegate is my go-to hero).

And it’s his Olympian focus on transport that, of course, is where his destiny lies. Moreover, it’s what’s given us and him the route map to his summer of love of smiles and positivity.

With one big cause of it having been the fortuity of the shift to flexible working which has meant (many permutations of) train visits to my office where we have a vacant air-conditioned and cosy room:

“My solitary confinement (it’s a nice thing to say, I like it!) where I can concentrate dad, work on my YouTube channel. It’s good, I love being here!”

This solace needn’t stoke a solitude furnace either. The nearby café owner, won over by his politeness and phraseology, has caught the Isaac bug, “here’s the great man!” he’ll chant, offering complimentary chocolate. 

At the office or at home, his YouTube channel, tickling 1,000 subscribers, is where his creativity blossoms and communication grows (he tallies every message made on all films – who said what, verbatim, running into hundreds. A log of the language of fellow transport lovers.) The micro-influencer and rule maker – “The rule is that the questions and comments have to be train related and appropriate and if they are not I will remove those comments” – received with respect by his flock.

Walking tours, vlogs and premieres of trips. Saturday night quizzes asking everyone to name dozens of Train Operating Companies’ liveries. Set to music, filmic and vibrant. Meanwhile, his memorising of simulator game developments – and of course his immersion – machinery facts, driving on all lines, differentiating carriage numbers. Executing tutorials perfectly. Demonstrations to others and self-penned scripts that the marketing team would die for.

Learning, developing, firming up skills and friendships; despite the holiday season, not because of – obviously.

As for going on those journeys of train discovery, it’s my wife, Eliza, who’s been the chief of the virtual village of grandparents, uncles, cousins, friends, care workers and more who make it all a reality; each with a slot in the completed visual calendar that’s so crucial to filling his confidence and ambition.

“I am loving this planned holiday in this wonderful country. Thank you my family, it’s amazing,” he recently said, as we embarked on our 17th visit of 26 set by him. “Where there’ll be no pain in my ears like the flying.” 

His trusted companion of noise cancellation earphones part of an ever expanding toolkit in his resilience to withstand more and more of real world blare. 

In fact, more and more booby traps have been avoided, thanks to his blocking out, living with and managing himself; vying with positive themes in this survive and thrive time in his life:

“Why did you take me to this loud restaurant. With a fly near that piece of bread there!!

I’m an autistic person. I’ll try and slow my brain down. I’ll try,” Isaac hissed into my ear, squeezing me to regulate himself from some bustle.

“Thanks, Isaac. I’ll ditch dessert, so we can go film a level crossing,” I replied, through shamefully gritted teeth, but ultimately restoratively for both of us.

An example where we both learned and adapted; one foot in each other’s worlds.

Meanwhile, mid-summer, we received an email from school saying he’s passed Maths Functional Skills Level One – a significant step to apprenticeship and example of how they craft his curriculum with thoughts of his future at the fore. A smash in the chops for stereotyping, maths being a subject he is drained by. For its abstract language alone (his teacher, confidently patient and dedicated, tells me of a set question about “how much money the man has left if he chooses a £10 red shirt over an £8 blue shirt from £20,” Isaac’s blessed logic suggesting the silliness of the whole thing as he’d just get the blue shirt). 

His school, mindful that maths is “not nice for my brain”, nevertheless necessary, designed an environment where he barely knew a test was taking place. Elder pupils present to help regulate him, a calm approach, rich in relaxation. And hey presto.

This achievement, that usually he wouldn’t entertain discussing, arrived with the impeccable timing of a high speed train departing on the dot – giving real substance to his transport themed antidote to summer normality and struggle. 

Because then came a moment:

A conversation Isaac had with Eliza (as so many key moments is his life have tended to be). About his future working on trains. A dangle he could grasp about the Transport For London (TFL) apprenticeship for autistic adults. Starting with acknowledging the maths he doesn’t want to talk about – well, it could help him, she offered, and this now began to make some sense to him.

As did the idea of volunteering, and a first step to independence and responsibility that could be so relevant to him. Specifically at Acton Depot, where the stock for London Transport Museum resides as well as a miniature train – and hosts regular days for enthusiasts. 

There was subsequent communication with the head of volunteers who has become aware of Isaac’s YouTube channel and is impressed by his “contemporary content”. So a visit was planned, with the reassurance that Isaac’s online buddy – the friendship forged via the terrific Transport Sparks group (for transport lovers on the spectrum, the most wonderful initiative that I’ve mentioned before) – would be there.

The night before, a conversation between the two young men. How best to greet each other? A high five or hug? A nice to meet you or exuberant hello? Writing the movie for this momentous occasion. 

Which it absolutely was. Spent with others of all ages and absolutely no dogs and minimum distractions. Instead, train stock and miniature railways; a lesson on how to shunt; a sense of what working looked like; interacting with staff and the public. Development, growth. And Isaac meeting these fellow enthusiasts was enthralling for me.

It was like each had a golden ticket to a magical carriage where they could partake in particular conversations – uncluttered, care-free, friendly and pitched together perfectly. Independent, in a group, off they went on their own. A scenario that always seemed so far off in my mind. 

It was a highlight. Who knows where it could lead, but for now, it was the pinnacle of many stings taken out of summer that have allowed for Isaac’s authenticity to be himself. Indeed, a dreamy mid-summer’s day.

Leave a reply

(I always try to respond)