Always feeling autism’s presence

There’s an invisibility shrouding autism that I see vividly, as if in neon lights, so evident is it.

People will themselves to perceive anything but autism. Whether through well meaning, a fear of difference, or simple (and maybe most often) unawareness. I will myself to always use my autism viewfinder, and usually spot a symptom, reason or peculiarity that forms a line, bold or dotted, back to the condition – so embedded in its world am I.

What I am witnessing now in my 21 month old daughter, Tabitha, seemingly on a typical developmental trajectory, emphasizes the functioning of a toddler without autism versus one with. She points at things, babbles back and forth with me. She waves and plays appropriately, with imagination, impetus and meaning. Tea parties, pottering around, blowing kisses, feeding dolls. She seeks interaction and play with other children. My, she gains my attention – and in a confident, communicative manner (some would say diva-ish). She shows a powerful instinct and intuition for moving around, responding, creating, learning.

There’s a loud and clear, forever hovering, question mark around her speech, or lack of it though. She’s sort of making out words, sounds and syllables. But probably not whole words. The nagging concerns around this single developmental drag remain just that. Just. I’m sure people in our situation seek out questions where answers aren’t needed or don’t even exist. And the reality I’m anchored to is that so, so much of what she does do, Isaac didn’t at a similar age.

In those early years then, whilst I saw all what was atypical and was silently alarmed, autism awareness wasn’t there to provide me with any sort of solution. Not till his diagnosis just after his third birthday. More telling, I believe others – friends, family, professionals – perhaps saw very little in the little he was doing; unrelated ‘delays’, toddler tantrums, maybe indiscipline, rogue parenting.

Because what was the most potent display of this alternative, different, disturbing (to me) behaviour? Simple upset. Tabitha’s tears don’t tear through me like Isaac’s always did (and on occasion, still do. Not being prepared for a haircut. A disruption to routine. Autism’s sting always lurks). And therein lies the subtlety. People don’t analyse tears and anger. After all, they just appear to be, well, tears and anger.

When Tabitha cries not wanting to get off a train, or let go of a toy, the toddler tears subside rapidly. In similar occasions Isaac wept and wept and screeched and shouted. His despair was dogged.

Fast forward to now and of course the intense intervention – speech and language, the one on one at school, life skills and more – Isaac has been subjected to, coordinated with comprehensive home parental ‘work’ (my wife the unsung, utter hero here), has set him on a journey where his behaviour and interactions bear little resemblance to those early deficiencies. However it’s not that he’s simply caught up or performs tasks typically – not when you delve and decipher, peering behind the person, assessing the actions.

What has come naturally to Tabitha, took, and can still take, painstaking endeavour and laborious learning for Isaac. Even now her holding of a pen or cutlery, physical gestures, reciprocal cues and more come easier and more fluidly for this little girl. Compared to Isaac’s heavy, laden, elaborate approach – remembering to share, comprehending the definition of it, why it’s a good, nice thing to do; moving his hand back and forth as it signals hello or goodbye. The defaults for Isaac are so unspontaneous, everything needs accurate recall, industry, an all-encompassing literal-ness that can be construed as one dimensional. That’s before accounting for the myriad sensory processing challenges and absolute engrained commitment to memorising, parrot fashion learning of every speck of detail, important or not, and of course, repetitive (not productive) play. It’s all so burdensome.

Someone with autism (and by proxy, family members) experiences life to the extreme, its daily ups and downs. Autism quite often feels like life on the edge. Mundane and maddening often, but on the edge nevertheless. Outside the norm. Marginalised. Unregulated, uncomfortable, unstuck. Envious and enraged on the bad days.

Maybe people are uncomfortable, or more probably, unaware of this and seek to smooth out. Making invisibility of the condition as glaringly visible to me as it’s always been:

Isaac’s acute anxiety means hearing a firework can trigger impossible-to-sedate fear at bedtime. But all kids get a bit frightened at night, right? Perhaps not to the extent that obsessing over Firework night runs well into March and beyond. Regularly enforcing that next ‘November I’ll sleep with mummy and daddy’’ and that each night imploring me to say, identically to yesterday that ‘no, there won’t be fireworks’, and ‘if there are, I won’t see them?’. Over and over and over again.

What about love for train leaflets and maps (identical, similar, functional, whatever); the need to possess and pore over. Surely lots of boys collect and catalogue stuff, don’t they? Maybe, but not when that hunger for hoarding cannot, will not, be sated, masking a deeper, more traumatic struggle with the world. Pinpointing Oyster contactless payment leaflets at stations and demanding I take 20 – that he already has – can lead to calm and a transient contentment. But the paraphernalia rapidly turns to a crutch, joining the untouchable hundreds that populate his room. Inanimate but perilous, should they vanish from his watch.

To say haircuts were my least preferred of enforced chores as a 7 year old would be an understatement. To say I hated them wouldn’t. But that’s absolutely not to say they were harrowing like they clearly are for Isaac. The feeling of circus knives scraping his scalp and bright lights blinding his eyes. Gaudy mirrors, nightmares from the last horrific haircut swirling. A scraped neck because of the hairdresser’s inability to control his angry, enraged body contortions. And worse of all, afterwards; hairs, swarming and crawling into every nook and cranny of the poor boy’s body. Only changing clothes there and then into new soft fresh ones would suffice.

Food phobias, at times an inability to eat, only eating specific foods in specific locations at specific times. Well, we all know fussy eaters. Not to the extent where hunger can be pretty much bridled thanks to the maelstrom of other irritating, infuriating issues clawing away at him. Hunger almost becomes a controlling comfort for Isaac – I guess.
Indeed, food ensures we have a daily taste of the complexities and conundrums of Isaac’s autism. When he wakes up and even before his usual, daily reciting to me of ‘today’s timetable at school daddy’ is a strangely forlorn ‘my tummy is full, I don’t need breakfast’, what’s imminent is an unleashing of emotion verging – or hurtling into – a breakdown.

His wonky food narrative that distorts and disrupts mainly my wife’s days is increasingly difficult to follow. There are the textural, colour and sensual challenges. There’s also the need to not talk about his lunchtime, odd counterintuitive games, where we mustn’t mention what he’s ate at school. Even if praising for eating something healthy.

In fact, the lunchbox rules are oddly simple, just very tricky to adhere to. We can’t make his lunchbox in front of him and there must be no mention of its contents. At all. It needs to magic itself into his school bag, out of sight, out of mind. If that happens he eats the contents at school, every last bite. If he sees any of it being made and/or any of what’s inside, he refuses to eat it.

The old adage ‘They’ll eat when they’re hungry’ is riddled with falsities. As my wife very cleverly deduced – nerves and anxiety suppress the appetite. However hungry one should be.

There is a flip side to all these behaviours that seem similar to typical children but are so different. The reigned-in ups. Rare but as not as rare as they used to be. His liberated joy when all goes to plan. Like a Sunday session at my spacious workplace. A warming, server-whirring silence. The environment as he expects, calm and sensitive, with people accepting his questioning of names and addresses and nearest stations, adoringly enjoying his descriptions of them as ‘handsome men’ or ‘lovely ladies’. The sometimes bizarre conversation starters, minutiae infused comments, squeezing and infectious physicality can be seen as the eccentric behaviour of a young child (he looks young for 7). For example, his phrasing (‘my eyes are wet’ when he laughs and laughs, ‘will my head come off’ when someone tries to explain ‘open mind’) can make people enchanted by him. But I wonder, is his age a big factor in this generosity of spirit?

There’s an all or nothingness about invisibility and autism. That’s probably to do with age. I imagine a point when he’s older that the invisibility I’ve talked about morphs into something visible, exaggeratedly so. Where all that people see is autism – and in epic proportions.

This is a hunch, I admit. But I suspect a reality thanks to the stats around bullying, exclusion, lack of provision, low educational achievement, poorly trained teachers, homelessness, unemployment, depression and more. Not to mention pure labelling and stereotyping.

I guess a healthy awareness, acceptance and an appreciation of difference is what we can strive for. A young teen at Isaac’s school, when Isaac was bombarding him with odd questions said strangely joyfully ‘this place is weird… it’s probably why I belong here’. It made me smile – a self-aware comment on difference, and why it’s ok.

For now just giving Isaac the tools to balance his behaviour can feel like ploughing through treacle. The effort and endeavour by us and him to display effortless behaviours is monumental. Maybe that’s why what we see clearly, others can’t at all. It’s why only if you’re living with autism 24/7 can you really be exposed to the peculiarities, torment and turbulence. To its shear relentlessness.

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Discovering problems, creating potential

Isaac’s immersion into his specialist school (for children with high functioning autism) has shown some of the marks of a fairly bruising process. And the onerous work has only just begun. We’re seeing a sensitive but substantial stripping back of some seriously stubborn layers of entrenched behaviours, habits, limitations, fears. I have no doubt that so many areas of his development have until now been neglected, denting his constitution. Physically and mentally. A shudder is sent down my spine, contemplating what would happen if he were to remain saddled with certain, what are rightly classified as, deficits.

These deficits, in areas such as strength and touch, have selfishly taken away a realm of positivity I may have always possessed. Dissecting them dispels any romanticism of autism, or ‘he’ll catch up’ that may have roamed, well-intentioned and benignly, in mainstream. They provide a reality check that until now the day to day handling of Isaac’s lifelong condition has been lackadaisical.

He blended as well as he could at his old (mainstream) school considering the pastoral approach that was necessitated by class size, desired integration, and non-qualified staff. Such were the goodwill and intentions and support, I hesitate to cite his considerable developments were in spite of the imposed ethos not because of it. However, his current school’s classroom assessments jettison any ambiguity about a need for intense and individually tailored programmes.

He has what occupational therapists report as ‘definite dysfunctions’ in social participation, hearing, touch, body awareness and balance. At his previous (mainstream) school, both Isaac and his teachers must have needed to adopt crude compensation mechanisms to integrate with the workings of a curriculum that couldn’t adapt appropriately.

I’m imagining that he was sensitively placed in the periphery for physical exercise and any ball sports so his underdeveloped body awareness and balance stayed that way. His stretched teachers must have tolerated rare scribbles when he attempted handwriting because there was no one to provide the one on one labour intensity required.

Through no fault of anyone, Isaac would have been drifting in activities, seemingly content and being involved ever so slightly. But this drift, this surface deep thinly veiled non-developmental behaviour, easy to repeat for him, easier to accept for teachers, would have been insidiously stunting and indeed marginalising. There was daily fall out in terms of his moods that I’ve talked about before. Knowing that long term damage was clearly happening too has unsettled me somewhat.

Social participation and playtimes expose brightest the folly of the non-specific, wholly inclusive approach. Galloping around making train sounds was his self-stimulating behaviour for surviving the furious environment that is the school playground. The soothing repetition went way beyond its initial positive effects, explaining precisely his deficits in play and social areas.

Indeed, in one of our more heart crushing sessions with Isaac’s psychotherapist, she made the knocked-me-for-six observation that Isaac doesn’t know how to play. He simply hasn’t ever done it. Play, a natural, sought after, intuitive, life affirming activity for typical children. An alien, complicated, bamboozling concept for Isaac.

(And how’s this for a topsy turvy thought: Isaac taking his sister’s toys and studiously playing with them alone is a good thing. Sublimating what appears to be jealousy into a desire to ape and learn.)

Heart breaking by the psychotherapist. But, as with so much emanating from his new school, enlightening too – offering up glimmers of hope. Specialist school is bruising for its pinpointing of challenges, healing for how it deals with them.

Like a slow turning tanker, sent ever so slightly off course, I’ve discovered riding waves of positivity and potential, knowing real, honest insight can reap so much.

Take handwriting. My inclination was to wallow in reports of inabilities to develop finger separation, his frustrations at the necessary tripod grip, the clear need for major work with fine motor skills. Whereas Isaac’s tenacious teacher pushes and compliments and improves and stimulates. His writing has literally transformed. At night he deliberately and defiantly stretches his fingers, discovering a dexterity, before formally announcing to me, “Daddy, today a certificate has been awarded to Isaac Davis for holding a pen properly. Well done Isaac.”

Isaac’s weekly certificates, which he avidly collects and collates, reveal so much of the school’s (and therefore his) industry. ‘Having three bites of a carrot’, ‘dealing with change’, ‘good listening and not having to repeat’ – in short, he’s working, and being worked, very hard in those areas that appear an anathema to his autism. Non-intervention is these areas has led to the deficits and therefore habits and limitations. Everyone, myself very much included, had given up, kept a blind hope, or consciously avoided these life skills with Isaac. Now life skills form part of his week, with patient, single minded professionals giving him the tools to succeed. Which in turn gives us the confidence to carry on the work at home – knowing when he can deal with something new, or eating his dinner at the table, tasting a new food he may have tried at school, maybe parking in a different place to a previous time. It’s far from easy, we’re fine perfecting the skill of distinguishing real distress from autistic like behaviours he can learn to manage. He will always have the generic sensory processing difficulties. The meltdowns are still explosive, world ending and catastrophic –  in many ways they are amplified and more gruelling for all parties. Transition, people leaving, will always be testing. But we are learning, just like him, a little more what his capabilities are and where discipline works.

 

All this is not to say autism is not championed, celebrated and respected. Indeed, it’s the filter upon which the school appears to make and evaluate every decision. They’ve seen vividly Isaac’s visual approach to learning – playing to this strength, they use the visual timetable which he rattles off to me, the whole week, in order, at least twelve subjects a day. He enchants teachers and pupils alike with his brilliant recollection of facts. This part of his autism is nourished and cherished.

Yet at times he can struggle to answer a simple question. He can be caught in a self-imposed routine and repetition rut.

The school will slavishly break down each topic in his timetable into explicitly described and audited mini chunks that he knows and expects. But then they may introduce a ‘surprise’ activity within this tight framework. Like learning comprehension in a reading class – about a certain book and character he’s prepared for. So he’s developing thinking skills and small change in one brilliantly efficient ten minute session. Totally, utterly inspired and priceless.

Likewise, his repetition needs are an ingrained feature of Isaac’s very existence. Always will be. But gentle easing out of, not so heavy reliance on, can take place. The genius strategy here is mentoring sessions with the elder boys. Who “like to repeat; we did when we were young like Isaac, but we don’t anymore. Isaac won’t always need to.” Who better to understand a little boy with autism than a big boy with autism? Who knows the desires and impulses and defaults. And can integrate them with socially appropriate behaviour. This is life enhancing stuff of a dizzying degree.

One massive truth is Isaac’s autism has never seemed as tangible as it is now. Despite all the intervention. And that feels correct and just how it should be. His vocabulary continues to expand to significant levels with it all appearing learnt like one would learn a foreign language. He seems to rapidly search his abundance of learnt phrases when needing to express something. “I’m going to read a book, just once, because it will tire me out. Then we won’t do it for a while.” Or when he senses change: “Yes daddy, I have changed my mind, you can drive on that road, because it is like a diversion.” And when he’s happy: “I love school, I want to go there today and forever, I want to give the building kisses.” In the morning: “Is it morning time? Good morning daddy< I haven’t been asleep for a while…”

His order can always be jumbled, with tenses astray. “Where’s the 302 bus, I might have lost it.” And it’s all delivered with a clunky, metronomic rhythm. This is him. It has an almost beautiful realism and logic. When I said to him “come on mister” recently and he got agitated and countered “No! I’m Isaac. Mister is for teachers”, I could but go concur (kind of) apologise and go with him. The school seem on the same page – it feels like they write the pages. Gloriously they’re as smitten as we are by my son.

His interests remain at best perfunctory. He loves lampposts; they light up his life. “But I love lampposts daddy, they make me happy.” Counting, spotting anomalies, one’s on during the day, off at night; he has a photographic recollection of locations, types, flickering ones – every single permutation of a lamppost’s life. They offer so much. And this dry information floods our airwaves as it does bus facts and general commentary and comings and goings.  

These sort of passions – their pros, their pitfalls – inform the armoury of knowledge the school possess about Isaac. They can then work with him, push buttons, reward and restrict, so accelerating to a potential. Teaching him life skills for example in a methodical, easy to digest, autism friendly manner, gives his preparation for an integrated, inclusive life. This is what I feel when I hear: “Today I did life skills. I made toast, daddy do you want toast? With honey or marmalade. In a toast rack, that’s where toast is made. Do you want toast?”

This is no political polemic about specialist schools versus mainstream. It’s about finding the best possible place for my son and his autism – with the best possible professionals and best possible environment for him to develop, and who knows, work towards a brilliant future.

A pertinent comment his teacher made to us when discussing his substantial handwriting training said it all really:

“He needs to write. He will need to write a job application form one day.”

(I always try to respond)

Leaps in development, bound by autism

From around one year old, milestones around Isaac’s development became millstones around my neck. Waving, exploring, walking, talking – the lack of – burdens that bore down on me. Isaac’s angelic looks and throaty, totally contagious cackle was countered by a thunderous and tortuous, impossible to read despair and sadness. There was little else in terms of human interaction.

Indeed, global delay was Isaac’s first diagnosis, at around two and a half, with walking, succeeded at two, the only real milestone accomplished. The flow of his development from this point officially entered muddy waters, where what he’d achieve and when was impossible to predict. The many early learning devices and contraptions for coordination and comprehension were receiving scant attention from Isaac. The concept of cause and effect evading him. He babbled, but words did come, bizarre words mainly, bit by bit.

Then the diagnosis of autism. One mammoth milestone. The confirmation of a lifelong condition that would deposit many a milestone into a morass of maybes. Yet forlornly foraging around in the mental fallout from the diagnosis – after the shock, the tears, the reassurance, the genesis of readjustment – I did discover a perhaps perverse positive in this. A relief even. That maybes and milestones are ok. I broke free from the tyrannical mindset of ‘things must happen’ or ‘things must not happen’ ‘at certain times’. The anxiety ebbed somewhat.

After all, we’d entered the autism world, to all intents and purposes, an alternative world. Where, as someone once lyrically put, as a parent you arrived in Amsterdam, thinking you were going to Paris. Your stride, pace and flavour of life shifts.

This sat very comfortably with a paradox that is bang, smack in the centre of parenting a child like Isaac. Every minute of every day is planned assiduously. You learn to leave no stone unturned. No surprises. Events, visits, meeting people – all scripted tirelessly. Respect autism and expect no rebuttal. Yet, beyond the here and now, well, you don’t think in those terms. Days can be predicted, life’s journey – with its milestones around everything from riding a bike, to first friends, to birthday parties, to swimming, to teams and clubs, to sleepovers, to school plays, to hobbies, to exams, to parties – anything but. You take each heavily itemised, meticulously audited day at a time.

Life can loom large, instead, the limbo of treading water suited me well; stopping me sinking in fear over the future or sorrow over the past.
Very recently however, Isaac arrived at a milestone that struck me as fairly profound, and one that needed wrestling with.
Isaac has had the autism diagnosis for half his life.

 

It’s at once arbitrary and hugely monumental. And it’s the latter that’s taken command of my mind. I’ve never cowered from the gravity of Isaac’s autism. But with it being a massive part of all of us for half his eventful life, I’ve sensed the need to shift my sentiments of late, seeing it in some sort of bigger context. To step back from the day to day and look backwards as well as forwards. Milestones are back on my mental menu.

 

We have also been in the eye of a tumultuous, tense time with his anguish and insecurity. His ability to slump in seconds from a blissful state to genuinely crestfallen, never fails to surprise or upset me. I don’t doubt a conscious coming together of heightened challenges from him with the acknowledgement of this latest milestone. In a series of eureka moments (with a lower case e) the need has been impressed on me to objectively evaluate Isaac’s autism.

And what I see heartens me as much as it hurts me. Because I see autism amplified whenever developments are achieved.
A tremendous truth is that Isaac has reached many a milestone with aplomb.

He is developing into a social animal (did I ever think he would?). Initiating interaction. Starting conversations. Showing warmth. At school, this social juggernaut of a boy appears catapulted into the playground. With not mere gusto but the gust of a hurricane. The mini-monologues demonstrated both his vocabulary and propensity to repetition that can restrict him. “Welcome back. What’s your name? Who’s picking you up today? Say your mum, say your mum” These are said daily, with a charm – and a compulsion for confirmation. And frankly, other kids can be riled by the repetition. Not all. But walls of silence and huffs of irritation, are more than detectable. I worry, but my powers of doing anything are impotent.

Repetition comes with the autism territory. There’s a lot of it in my house. A side effect of the developing autistic brain. This is commensurate with not just diagnostic criteria, but anecdotal and empirical evidence from self-advocates (people with autism). It’s just one example of the double edged sword of a milestone accomplished in an autistic context.
Another being Isaac’s cognitive developments. The raw facts are promising and I hold them tightly. He reads (did I ever think he would?). Quite beautifully. Swiftly. To say (as a committed Thames Estuarian) I’m proud of his regal pronunciation is an understatement in the realms of the epic. His photographic memory is the engine that’s driven such a development. He gives short shrift to the typical learning of phonics – using sounds to make a word. It’s the whole word or nothing. So when he saw the word avenue for the first time, he preferred to say adventure than try and spell it out. Words like ‘Crescent’ for him is a breeze; once a word’s been seen and been told to him it’s in his head.
What seems to be in deficit is comprehension. Even a willingness or desire to imagine, immerse himself in the storytelling bit. Anything abstract of involving a need for analysis. Attempts to engage in these discussions irks him, it seems off his radar. This out of kilter way of learning could mean him coming unstuck mainstream learning, if no major attempt to galvanise his lesser abilities to inquire.

 

As with all things autistic, though, you’re never a million miles away from a little mirth. He insists on reading the ‘written by and illustrated by’ bye-lines at all time. And will end reading a book with ‘and now it’s time for the blurb’ paying little interest in the contents of said blurb. Imagination wise, he had no time for tooth fairies with the tooth being pragmatically exchanged with either parent for a gold coin. Dressing up day at school held no sway. On arrival at school, he proudly declared, “I’ve come as Isaac”. And then there was his dismay that there was no sign that said “Try something new today”, mummy, where is it?” on a visit to a poorly branded Sainsbury’s. It’s situations like these where his observational skills and outsider status are original and need no sorrow, only joy.

 

Where his long, logical learning march can lose momentum at best, at worst come crashing to a standstill, is his need to obsessively follow order and detail. You can practically hear the hum and whirl of his programming brain as he both processes his facts and then resolutely holds on to them and repeats them, somehow needing to say and say again, to give himself a psychological balance. His way of keeping calm in a chaotic, illogical world, perhaps.

 

And the smallest of anomalies are akin to mini crashes to his computer, with the ability to reboot, cloudy. Days, weeks, months, pm or am, the expansion to his temporal learning of late is extraordinary (nothing makes him more elated than the first day of the month, hurling himself out of bed to “see the clock, see the clock, it’s the 1st. So exciting. Wow. Daddy”).

 

“Daddy, on Feb 13, pm, you collected me from school and read books”. A fact plucked at random from this mind, he said yesterday, unprompted.

 

“Look at me daddy. Tomorrow when we wake up we will talk about going to Golders Green on the northern line. We did it yesterday, do you remember?”

 

“You are giving me a bath on April 21. Say yes!”

His days are punctuated with the need to affirm small events like this – from the past and about the future. To keep that equanimity in his consciousness. They are the tentacles of this ever more complicated calendar that inflicts his mind. With no margin for error. Again the unambiguous nature of autism diagnosis will always anchor Isaac to this behaviour that if not handled delicately with a finesse, can tip into the negative. In fact brain mapping and imaging research echoes this too and more – with evidence for overdevelopment in the regions that deal with decision making and the sorting of information.

An abundance of anxiety comes when there are inconsistencies to the detail. Which can implode in the form of a vicious circle. Hoarding, needing to locate a specific, meaningless toy he was playing with at the same time last week. Becoming agitated when it’s not there. Eschewing food. Refusing to do anything. Ignoring behaviour charts. Shamefully, I can’t help but be infuriated. The challenge, the real battle, is to see positive milestones reached, as opposed to bad, defiant behaviour. That, I think, needs a bigger picture, to view Isaac’s development – actually, it’s a critical coping mechanism. Face up to his changes, embrace milestones. Ones I once thought he’d never reach.

With all these emotional, social, and cognitive leaps he’s accomplishing then, autism has remained a tenacious presence. Even his self-awareness too with a new found ability to articulate his sensory discomforts. “It’s too strong, too strong, no thank you” referring to any clothes that aren’t super soft. Or “I banged my head” if he has, I think, a headache. Learned cues versus intuition and instinct induced expression.

Milestones in Isaac’s world come with an autistic sting in the tail. Controlling that sting will always be hard. Our levers of change restricted to simply ‘knowing it’s coming’. So sensing autism’s arrival is critical. Which means expecting him to keep on developing and reaching milestones is crucial too.

A New Kind Of Holiday

This article originally appeared on www.enablemagazine.com  

 
This year we took a holiday from holidays, so to speak. It was at times arduous (mainly for my wife Eliza), relentless and repetitive. But it was also as relaxing as it could be and reassuringly routine for our son Isaac, who has autism. And that was all that mattered. 
 
LOSING BATTLE 
 
Since Isaac was born, my relationship with holidays has been fractious. A trip to a peaceful Mediterranean resort a few months before his diagnosis reached the pinnacle of distress for him and despair for us. What we know now – that routine is his oxygen, his thinking rigid, and he’s never a second away from sensory overload – means we were fighting a losing battle daily. 
 
It rips my heart out how we were (unknowingly) letting him down. From forceful shepherding through maddening airports, to inconsistent mealtimes, to improvising the day’s events, to a need for armbands in the pool. 
 
But out of the chaos came the calm of successive UK-based holidays. Where mapping out the journey right down to the service station visited, meant Isaac knew what, where and when, and was a delight and delighted as a result. Photos of the cottage before we got there, his favourite books, specific foods. We’ve had an all-out autism-friendly couple of holidays. 
 
BREAKTHROUGH 
 
And then, last year – a big bold breakthrough. Engineered and orchestrated by my wife, we ventured on to a plane to a little house we knew in a cosy complex with a swimming pool. Despite Isaac being able to learn and speak in his own way and express himself better all the time, he and we are very much governed by autism. So meticulous planning was absolutely critical with visual cards navigating us through the hardest bit: the airport with all its twists and turns. 
 
He knew we were going “in an aeroplane, in the sky, to somewhere hot”. He could “splash about with pants and a jacket” (an inflatable one). He’d have all his books and DVDs and food with us. 
 
NO SURPRISE 
 
My wife’s preparation meant minimal surprise and small but consistent rewards led to a successful experience. A half hour – allowed for in the schedule – going up and down the escalators, provided sensory relief for him. On the plane, he actually enjoyed the turbulence which confirmed how topsy-turvy his balance and physical being is. It was a liberating and lovely holiday. 
 
We stayed put this year. Isaac was fine with it – he doesn’t seek adventure, escape from the norm. His holiday was blissful as he went on the tube every day, printed pictures, and was thrilled that days were panning out as planned. He also got to kiss his new baby sister Tabitha every day, which was enough change for him to deal with for one summer.