The very things that many people think make the world go round, actually make the world go wrong for anyone associated with autism. Hustle and bustle, chin-wagging, dropping everything to do nothing, spontaneity, chilling, trusting instinct, nous, crackling atmospheres, surprises, adventure. Society is bred and nurtured on wholesome truths like variety is the spice of life. When for so many touched by autism, variety is the spectre of life. A world where the primers of improvisation and intuition make it a world wrought with bafflement and, quite, frankly, danger. Off script, on high alert – us and Isaac.
Battening down the hatches has its appeal, believe me. Burying our heads in quicksand, getting lost to a limited life of fierce logic, linear living and uniformity. Scripts, structure, rigidity, predictability. Repetition, repetition, over and over.
And revealed to me in these positive and proactive moments – when brightness seeps in and there’s buoyancy and a bouncy spring in all our steps – is that Isaac’s existence can be one to really revel in. That despite how ill-fitting the world can be for his autism and dyspraxia (from sensory overload to the ubiquity of physical and visual disorder) right now, permeating this 8 year old boy’s climate is an extraordinary kindness. We are discovering microclimates of care and love orchestrated by friends, family, even strangers. At this very particular moment in time.
Out and about, his turn of phrase, turns heads. Bringing joy more often than not. Who can’t fail to warm to a young boy earnestly commenting that he is “so happy when I’m on a bus; having such a lovely time. Can we watch a little bit of buses and trains please daddy when we leave this bus for the street near the station at Highgate? Highgate has a capital H. Capital letters are for restaurants, people, names and places.”
Thoughtfulness can be found in the least expected places. Some recent repair work to our house meant a cavalcade of builders disbanding in his space – and disrupting. The noise and mess could easily have accelerated in Isaac’s troubled mind to a torpedoed home landscape. Step in builder Jim and his innate appreciation of autism, and perception of Isaac.
Fanciful maybe, but it even felt he allowed for Isaac’s visual perception and motor skills challenges, showing him where work would happen, bricks moved, tools left, mess cleared. Unifying for him this tapestry of disturbance to his world into a digestible, comprehendible whole.
But what if he arrives there and it’s not yet open? A kink to the flow of the punctiliously prepared day exposed already. Like a cumbersome computer ever expanding its ram capacity, Isaac’s ability to store information increases by the day; the flip side being a crash when the storage malfunctions will be ever more dramatic.
Talking of trains (which Isaac rarely doesn’t do) Isaac’s monologues of multiple station names and their adjacent roads are – at the times when he’s open to communicating this extraordinarily processed and recalled information – received with relish by friends. In awe of his photographic memory and encyclopaedic knowledge, blessed by his idiosyncrasies, these fleeting episodes affirm the value of his ‘difference’ and how it can instil optimism in all.
When things are good, it’s an extended family micro climate where his exuberance, eccentricity and infectious hysterics, just makes them smile and laugh. It’s so gloriously spirited.
They clash, of course. My wife mediating magically. But there is a kind of beautiful complementary nature to their interactions. Her typically evolving play is imaginative, implying the fine spatial and visual skills that he is so bravely battling with. Compering her mini tea parties can become quite chaotic – she creates, he crash, bang wallops. But Tabitha loves his rebellion somehow.
As she was, as if seated breathlessly in an atmospheric auditorium, by his extraordinary delivery, word perfect and completely from memory, of the entire Gruffalo story; most amazingly, in the exact tone and tenor of the film they’d both been rapt by. This sublime skill of his – entertaining and enthralling Tabitha (and us) in equal measure.
All these events and relationships emphasize just how safe and comforting the many man made microclimates of kindness, openness and awareness are, when we are lucky enough to find ourselves in them. Sometimes in public, usually not. Where awareness has been impressed upon people with vigour.
Who knows the longevity of this not impossible to locate kindness? I feel tears when recollecting the tantrums that people interpreted abjectly in the early years, when kindness was at best evasive. I block out the din of inner dread when contemplating him getting older. Where the world is one of dipping in and out of things; with intuitive filters and edits life-saving tools for folk – anathemas to how Isaac sees the world, pursuing excessively, fixating, immersing, obsessing. When his quirks may be not as refreshingly received. A crushingly conformist world at odds with those deemed odd.
(I always try to reply)
Today I saw a post from Jess over at Diary of a Mom and she mentioned having heard this.” This isn’t what I signed up for!”I remember saying those words once. I remember being so angry I couldn’t breath and moments when I could breath, I just…Read more
Is it too severe to say autism serves up a degree of daily dread on parents? Perhaps not. There’s certainly a never ending sense of uncertainty.
He can sway between extremes alarmingly swiftly; middle ground is rarely inhabited by Isaac. Hence our every day, every waking hour default is ‘on edge’. Always prepared for some heavy lifting.
Our nervousness will vary vastly in terms of intensity. Weekends and holidays, where a lack of routine can take Isaac hostage in horrible ways, could mean it’s heightened. A precisely prepared school day with plans aplenty and a sense of cautious calm could even kickstart the day – although my stoic wife may have to suppress post school potential fallout.
Very likely compounding the need to confirm the day’s itinerary, something will be mentally fidgeting him which he will attempt to articulate through his repetition or recollection of facts:
Like a train journey he recently did that stopped at an unannounced station: “daddy, why did the train stop at Basingtoke on the way to St. Ives on the national rail services? Why didn’t the driver say so? Because he did say the train stops at Reading and… (lists them all)?”
Maybe it’s his grandmother’s new journey to work. Something someone said at school. Events, dates, buses, trains.
My wife possesses a particular patience with connected tenacity to confidently locate his real worry about the day ahead: maybe he knows nothing’s on in the afternoon and that’s scary, perhaps he’s going somewhere there may be a dog (he hates and is scared and repelled by them and their, I imagine, erraticism: “dogs are rubbish…,” he’ll say, “they have to go away…stupid dogs”). Or is it a day when I might be home late from work (because I was on the same day last week). Whatever he’s recalling – however long ago – will mean he’s experiencing the same stress levels as if it’s happening there and then, in the moment. His mind can appear a minefield where treading carefully guarantees little in the way of protection from unexpected explosions.
Because at vulnerable times the inventory of knowledge and experience I’ve harnessed about Isaac emits mental tremors in me before I attempt to do pretty much anything. I can catastrophize to the point of crippling anxiety. Indeed I’m certainly not the first person to comment that parents behave in autistic ways so absorbed are they in their child’s autism and its attributes. And so keen are they for an antidote to the chaotic autism-unfriendly, spontaneous society we live in. It’s common sense damage limitation. But it can also be damaging. I know that.
A recent holiday triggered that survival tactic which then overstayed its welcome so suffocating was its nature. The first half of the holiday was as care free and conventional a holiday I believe we’ve had. With extended family nearby, we stayed in a cottage on a cute little farm; it was symmetrical, organised with well-behaved animals. Which family members visited us and when could be plotted and itemised by him. Every day the chickens and sheep and ducks, safe behind fences, could be fed with Farmer Tim at the same time. His previous blanket wariness of the animals became an accepted awareness. No feeding of course, and a demand that the animals ‘stay away please’ but it was an (somewhat edited) idyllic few days.
Making Isaac authentically happy (as opposed the faux happiness of transport talk or being boisterous) is hard to come by. When I offered an early return from the holiday he visibly loosened like a tight knot magically undoing itself. He played nicely with his sister, ate a sandwich and even went outside. But was that happiness or so-big-it’s-impossible-to-quantify relief?
A process of marginal losses happens. Isaac’s limited eating, limits further. His propensity to do anything lessens. We all follow a strict routine. Meltdowns aplenty. Ipads are a relief. Life contracts to very little when all these compromises are made.
And liberating us from this not so long ago were the objective Custodians of Isaac’s potential and welfare and hope. His therapists and teachers at his sanctuary, his school. Who eased us in from the autism waste ground we were scrabbling about in. They spoke of his timetables, how he’s loving laughing and socialising at school. Their pride in him. His hilarity, imagination. Mostly though, they implored us to own our lives. Leave him with grandparents. Indulge but know when not to. We innately know what he can and can’t do, when to or to not push him.
Importantly, the next time I’m caught in an autism rut, where I lose myself to its supposed traits, I’ll try to tell myself it’s too complex a condition for such, well, crass simplification.
We really can lighten his mood with a slightly more muscular approach. I barter with him – eat, play, see certain folk; and you can then tell me whatever fascinating encyclopaedic bit of travel trivia you absolutely have to tell me (like that there are three Streathams on the national rail services which he’ll list, before naming linking bus numbers and more.) We can dampen that daily dread – it’s possible on occasions.
There’s an invisibility shrouding autism that I see vividly, as if in neon lights, so evident is it.
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.
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.
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.
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.
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.
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.
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.
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?
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.
(I always try to reply)
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.
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.
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.
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.
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.”
Yet at times he can struggle to answer a simple question. He can be caught in a self-imposed routine and repetition rut.
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.
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.
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?”
A pertinent comment his teacher made to us when discussing his substantial handwriting training said it all really:
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