The weight of the world on tiny shoulders

Being in possession of a single care in the world should be one concern too many for any seven year old. Let alone a seven year old buttressed by physical health, familial security, stability and comfort. But part and parcel of autism’s package is some wayward brain wiring that seems to spark major anxiety not to mention a very real possibility of mental health issues. From an incredibly unfair, early age.

Isaac loads his days, and quite possibly nights, with an assortment of cares, frets and stresses - too many to numerate – that take counter intuition and patience to even begin to quell. Many of them, of course, centre on his desperate, pathological need to manage and compose his days with strict, sequential events he’s familiar with. And he will prowl after my wife and me seeking clarification and confirmation and minute by minute commentary. Over and over and over again.
“Mummy, who’s looking after Tabitha after her sleep number one?”

“Is daddy going to work now or very soon?”

“Can we go to Costa Coffee on Finchley Road before the clock clicks to PM?”
“Daddy, where are your friends? Are they at home or going to work?”
The harrying begins before breakfast. With many questions and answers compiled – out of necessity – during the previous 24 hours. Scripted, by him, without ambiguity, tonally specific, not a word out of place. With all the information needing regular reinforcement in the form of repetition. To not conform, to answer without precision or attempt to divert, is to risk agitation at best, most likely meltdown. To therefore execute any plan is a highwire act, the more mundane the more menacing; such is his need to control, dictate and deliver, the tiniest deviation will trigger upset. We are hostage to who goes where, when and how. Popping to the papershop on the way to the station when it hasn’t been planned and discussed and repeated? Forget it.

There’s no let up. No respite from a need to balance his ever computing mind, the oxygen of literal information his survival. Survival, not satisfaction. Or contentment really. Answers provide transient reassurance, ephemeral composure, as opposed to any overt happiness on his part. These cares of his, these things he really, really, really worries about with their terrifying capacity to dominate him and therefore us.
There’s an overriding need to control everything that means the routine obsession has mutated into other forms of repetition, detail and description. He mines me for minutiae, mainly things I’ve told him time and time again. (Offering up new information, even in the factual, dry way he desires so desperately is hit and miss. The discoveries of detail need to be initiated by him in the main). People’s addresses, their whereabouts, train stations, street names, bus routes, places we’ve been. Things people have said, announcements train drivers have made, announcements train drivers should have said but didn’t. And dates. Of all events. All unerringly accurate. And all of this, this avalanche, delivered at pace from the moment he awakes, identically, forcefully.

“Daddy when you go to your office near Oxford Street, will you touch Oyster at Dollis hill and Piccadilly? Why?”
“Why has Tabitha got no clothes on?”

“On the Jubilee line, why does the man say stand clear of the doors? Why ,Why?”
“Can I tell you something…The light bulb on the street post in Chestnut Road doesn’t work? When will it work? Now or very soon?”

He knows the answers, they’re facts burned into his brain. But it’s not as simple as information over imagination. Everything seems in visual, photographic form, a moving tapestry he seeks to maintain. Like when he listed (off the cuff and unprompted) all the stations on the Jubilee Line that have a letter ‘p’ in them. This info had come to him effortlessly but pressingly; and of course, correctly. So as ever, a small light is shined into his big brain, that when I’m being positive and embracing enjoy and marvel at. Which is not always. Too often his attempts to make us answer everything, try our patience - and we come up short.

Despite all this, I can’t make as bold a statement as Isaac is not a happy child. He implores happiness in us after any distress. Or even randomly. He will flood with delight at unexpected moments, demanding ‘cuddles’. But authentic joy has a manic, frenzied edge; a kind of chemically induced hysteria if we comply consistently with his commands. And within seconds, he could be grasping his ears, full of tears, punching or pushing, screaming.
(The closest he comes to a relaxed joy, when the tempo of his thinking slackens and settles a little, is, as I’ve said before, when journeying anywhere on the London Underground. He exhaustedly reads all signs, memorises announcements and is energised by intersections. The whole tube map seems to appear in his mind’s eye, each station, line and colour, a kaleidoscope he lives and breathes.)

It’s as if he has a different setting or temperature to us. Swinging in seconds from radiating elation to reaching boiling point. Acclimatising to his meandering mental state can be unachievable.
During the long, drawn out, empty summer break (his baby sister a permanent, chaotic presence too) this perpetual state of botheredness my son has been in has persecuted the whole family. Knowing his despair and demands - but having blunt tools at best to deal with them is a numbing, powerless state of mind to be habiting. Bogging my mind down with Isaac’s fragile and frazzled mindset has been like brutal combat.

But mercifully hope is revealing itself from this dark, deranged place.

It comes in the form of his new school that he has just started. A rather beautiful, inspiring place that battles for around 40 children with high functioning autism and Asperger's Syndrome. After the mainstream struggles – despite admirable intentions – I have faith that Isaac will flourish here. Focus will be on his unique strengths and interests. Strategies tailored to overcome difficulties will be at the fore. Academic achievement will sit side by side with social, emotional and personal development.

Here, perhaps happiness for Isaac can be attained. A place made up of people who will discover him - and him, himself - in a way no one has before. Because a condition as perplexing and otherworldly as autism needs professionals and carers to lay the groundwork for others to tread carefully.
I hear of a holistic approach, where he is solely in the hands of experts. A joined up support where he’ll benefit from occupational and speech therapy, yoga, sensory integration and more. Where there’s a necessary and welcome very low ratio between pupil and teacher. Plus a pastoral care that sits above everything. Knowledge of autism unparalleled. The condition respected so the child can be pushed appropriately. A balance that only the most skilled and informed professionals can perhaps keep.

There’s psychotherapy too – a potentially unsettling idea for a parent. However, when aligned with strategies emanating from the school, the thought becomes bracing.
Some preliminary sessions with the psychotherapist have told us what we expected. That the battle between autistic and non-autistic traits is being lost. Obeying his orders means living in a regime that’s doing none of us favours. That the relentless repetition leads to mindlessness. That we are accommodating not addressing this mindlessness. That, above all, he’s anxious, worried, on edge primarily because the world and its vagaries simply doesn’t work for him.

And making the world work for him will be painstaking and harsh and challenging. Just assessing the sensory processing hell he clearly experiences (beyond the straightforward autistic ones of routine, order, self-stimulation) makes me realise the urgent intervention needed. Streaking through his body and mind are sensitivities that need dealing with. Wanting to be squeezed, demanding pressure. Aversion to so much clothing and all labels. Needing to smell people. His many food phobias. Freaked by dirt. Terrorised by the irrational movements of animals. Pigeons in particular and therefore anywhere associated with them. His clumsy and poor motor skills and lack of body awareness work against him in ways I can only imagine. The torment he gets from certain noise and smells. All unpredictable, all potentially everywhere.
Now, at last, I know a team is in place. One week in, I sense an ever so subtle aura of delight is emerging from him. Replacing the mainstream school scrabbling about, are the people who will know what’s best and truly deliver for him. Now he’s somewhere that possesses the tools to make my boy happy. Which is the least he deserves.
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Family dynamics

Tabitha, Isaac’s sister, recently turned one – to a cringey chorus of proudly cooing parents. A mother and father whose propensity for a more phlegmatic parenting profile had shrivelled ever so slightly. Overly emotional and overwhelmed as we were by what thousands of other babies up and down the land would be doing identically.

Crawling with intent, reaching and grabbing, interrogating for a micro second, disrupting, waving, waving back, indiscriminately squishing fresh vegetable, fruits, pasta bakes – you name it – and making great ceremony by sticking them firmly and forcibly in her mouth, and the surrounding areas of cheeks, eyes and hair. Wanting to use a spoon for goodness sake. And, diametrically opposed to a sizeable smattering of responsible and committed dads, a mini-behaviour that comforts me considerably: the pointing of the remote to commence an episode of Peppa Pig. Cause and effect – tick.
Tabitha’s interactions, instinctive learning and determination for independence, contrast harshly with Isaac at one. Viewing this behaviour is as soothing as witnessing Isaac’s atypical behaviour was agitating. So when we paused to briefly take stock and analyse Tabitha at one, we allowed ourselves to take some much deserved pleasure in our little girl’s developments. A brief pit stop in sentimentality-soaked mummy and daddy land if you like.
Hesitancy holds us back most of the time though. If only because I’m not quite sure what emotion to access when pondering her typicality. Joy? Relief? Guilt at being joyful or relieved? Sad for Isaac? Happy for her?

None of the above in unreconstructed form. Isaac is Isaac. Unimaginable in anything other than his irresistible, incandescent, intriguing form. Autism is part of him. Seeped into his whole being, his psyche, his sensibility. Tabitha seems to be jolly and moving in a healthy and straightforward manner. A kind of contentment is about as close as I can get to emotional quantification.
Anyway, there’s not a great deal of headspace for pointlessly monitoring a sibling of a child with autism. Not when occupying us, testing us and at times defeating us, is Isaac’s role in all this. His place within this small, nuclear family. Made all the more vivid for him since Tabitha has started roaming unpredictably around the house. How we behave and interact as a family has become a quandary that I fear will never expire. Despite a great, enduring love between Isaac and Tabitha.
It's not that 'family time' is something I imagine conjures up sepia images of blissful harmony for most people. It’s just that with autism, the concept of quality family time is an odd one. Pulled as so many of us are by convention to deliver memories that demonstrate a beautiful unity – when in reality the accomplishment of such magic is hopelessly unobtainable.
Our experiences with wider family have been instructive here. Ours is a big, boisterous, effortlessly loving brood. Idealistic and inclusive, with kids of similar ages sparring, socialising, discovering. For typical young families who thrive in a spontaneous, soulful and healthy environment, one couldn’t wish for anything more.

A thread of unambiguous visceral love runs through the amorphous ensemble. Bonds, mutual, respect and instinct – traits not associated with autism at all - the spine that solidifies any hiccups, misunderstandings or mischief. Which has made Isaac’s position all the more precarious for him and, equally, me. The social challenges of Isaac’s autism are often the ones that marginalise him the most. And amplify over time, confounding us all. Despite both the kids and adults being (incredibly) well-versed in autism, the natural social forums of family life are a bafflement for Isaac no matter the extent of endeavour by all to integrate him.

So I’ve come to terms with being absentees at get togethers. Why would we put Isaac through it? Him desperately trying to block out the sensory hell of noise and conversation he can’t decipher. And despite his cousins knowing the reasons behind his removal and supposed special treatment, there must be thoughts that this is some sort of mutinous behaviour by him.  How can they not ogle at his oddness – of, for example, his current coping mechanism doing ‘train’, where he relives, exactly and exuberantly, a plethora of train journeys loudly to himself; sounds, announcements, the lot; the accuracy, as ever, extraordinary. Normal, urgent behaviour to extrapolate himself from the surrounding madness. Where he sees madness, others see normality. And vice versa. A chasm.
But over recent weeks and months our immediate family has become a microcosm of the wider one. With all the hullabaloo of free flowing family life that our slightly solitary existence had managed to avoid, having entered our four walls. At a time when many areas of Isaac’s life are similarly anxiety inducing, calling for a flexibility he cannot fathom.

His shear physical force around Tabitha is one manifestation. Hugging, hysterics, squeezing of her. He’ll show perfect ‘baby’ behaviour, no allowances made for his bigger age and height, aping quite brilliantly her movements and gestures, so collapse is tantalisingly close. Perhaps like twins? Double trouble, an ebullient double act. Our fear for her littleness is massive of course. There’s risk everywhere. And yet, we can count on one hand the number of times he’s made her cry. Her resilience to his repetitive teasing, snatching of toys and overzealous tickling is uncanny. Maybe she knows malice is non-existent. But he’s a force around her that needs containing. And what’s around the corner?
Belongings are in peril always. Hers of course. He’s adopted an obsession with peppa pig, books, DVDs, magazines – hoarding, cataloguing. As always with the capricious nature of autism, he’ll sink into silence and the security of his phone, tube maps, leaflets, and an almost eerie calm at any moment – which fails to never put me on edge a little.

I don’t doubt a strand of jealousy. And I appreciate the keenness by so many to stress that Isaac must be showing jealousy; how normal it is and, indeed, isn’t it rather reassuring it must be the reason for his wayward, difficult to control behaviour. Well, yes. But it is a whole lot more complex than that.
As is so often, explanation, survival strategies and lateral solutions have emanated from the people of BOAT (Brent Outreach Autism Team) who doubted the jealousy argument choosing instead to discuss the arrival of a knockabout, crawling, messy, clumsy, unpredictable, presence, that test all parents and siblings alike – but who have the tools to manage. He doesn’t.

And then there is all the other parts of his life contributing to the melee. Tabitha is one cog of a complicated wheel that risks running him over if we don’t navigate it competently and coherently.
As such, BOAT looked for problems elsewhere. Like his experiences at daily school lunch; a break from the nicely regimented school day. An echoey, cluttered bundle. When his teaching assistant is stretched. Kids run amok. He stims, flaps and seeks solace. But it’s a fa├žade that crumbles on his return home, my wife left to pick up the pieces.

It is clear his shifts in defiant, dictating behaviour, ferocity of frustration, anger and not knowing his own strength, come from a simple place that Tabitha can trigger, or school lunch, or family outings, or unexpected visitors, or pretty much anything when the day’s minute-by-minute planning has not been executed meticulously. Which is chaos, disorder, noise – any deviation from the absolute known. Any coping he has done in public is camouflaging internal insecurities and agonies brought on by sensory-processing difficulties, his non-grasping of social language, or, mainly, a lack of order. A need for pure reason and logic perhaps – his lifeblood in scant supply.
And after any event - at which the stress for him could have been imperceptible for anyone else - when he sets about recharging his battered batteries, carnage can ensue. A state of autism-induced frenzy. Rage, sadness, insecurity. His autistic traits reaching a fever pitch that we cannot douse. Rituals are rife. His routine having taken such a bashing, he’ll fixate on a memory, something specific, so desperate he is to control his environment. 

Perhaps on the journey home from a supposed innocuous park visit. Roads are a latest obsession. He is showing a black taxi like knowledge of journeys. Each, though, once completed needs to be completedidentically. Road works, a shortcut, diversions – can be critical. Scripted responses firmly and dogmatically directed by him are demanded.
 “We’ll travel on Minster Road – looks like Westminster on the jubilee like train. What does it look like daddy? Say Westminster. Then after Minster Road, Cricklewood Broadway. What line is it, is it the Over ground. Say yes, of course…”

Monologues delivered in a heightened state, where if you don’t play your part or follow the instructions he may scream, become agitated, freak out and become impossible to do anything with other than restrain and hug. If I get the specific reason a bus is not in service (“because the driver has gone home for his tea, daddy – say it”) wrong, then there’s thunder.
(He can rattle off 10, 20, 30 road names in perfect sequence to describe a journey. Together with the name of the borough that, I hadn’t even noticed, appears on all road signs. Likewise he knows from memory the entire tube map, which line each station is on. Yet, when asked he may not answer if he doesn’t feel like it. Even, or especially, to parents wanting to show off his skills. The sense of reward that we may feel imparting knowledge, a foreign concept to him).

Rituals proliferate just to relax him; having the opposite effect on us. Cooking with my wife thrice daily at least, making mini trilogies of videos of preparing specific items at specific times. Then watching them back repeatedly, memorizing and collating. Needing textures of all the foods to be the same, consistencies for stirring identical. Then there’s the journeys to the same shopping centre, set of escalators, coffee shop visited, stuff ordered, books bought, conversations had. All tightly, forcibly adhered to; an iron grip on us. Repeated behaviours that become magnified to epic, end-of-tether for us, end-of-the-world for him, proportions.
One small step that’s yielding, for now, some small gains in coping mechanisms is him doing half days at school as suggested by BOAT. The effect on my wife in terms of childcare is clearly arduous as is the exhaustion she experiences tending to his ever need, focusing on him solely - help from our part-time nanny taking Tabitha but rarely both kids such are his demands. The good news is he’s fortified confidence wise. Less likely to be knocked sideways by his inability make it through the day unscathed and not too discombobulated from proceedings. The acuteness of his autism doesn’t abate though. And of course Tabitha is around anyway.

Weeks on and he’s still confirming “Not lunch today at school?” And only recently did he tell us that at lunchtime there are “too many children in the playground. I didn’t like the noise.”
Many days, my wife has to simply claw her way through catastrophe to get to even keel.

Real life like can be real agony for him, and us, with its irregularity, impossible-to-tune-out noise and lack of structure. It’s that stark, simple and unfair. A hatred of the haphazard. “Give me some space please!!” he can plead. He has an inbred inflexibility that so, so limits what he can do.
And the upshot? A segregated, slightly sad family life. Where my wife and I split duties of a weekend and during holidays. Like ships, with one child on board, passing in the night. That way, Isaac has a 100% focus, him calling the shots. Rituals and repetition running the show, but with slightly less intensity. A tiny bit easier to manage.

It’s where we’re stuck, albeit consciously. Our family we cherish, living a limited to stop it becoming an impossible chore. Now, as we tread water between him attending the new school where we're confident he’ll have the intervention needed. Where we anticipate a new dimension to his life - where less distractions mean his feats of memories, his humour, his extraordinary capacity to learn, communicate and more are coaxed and cajoled, not compromised.
We cower for insularity for self-preservation’s sake not selfishness. I personally get tangled taming the sorrow of solitude with the desire to grasp the nettle of sociability - knowing the stings can be more than skin deep.

It needs a doggedness that I’ve not developed. It can feel like we are two islands within an island some weekends. That’s fine for now. We’re still the proud parents of two children going about our business – just slightly apart. For now.


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.

Blog of the day on Mumsnet - 2nd April 2014



Today is World Autism Awareness Day. In this guest post, MN blogger Matt Davis shares what his son's autism has meant for his family, and argues that there's still much to do to ensure that people with an autistic spectrum disorder are treated with understanding and respect.

A year-long, punishing process of tests finally came to its conclusion with the words “autism spectrum disorder”, delivered in a paediatrician’s room. It was a tongue-twister that deliberately acted as a soft landing for the harsher truth: “your child has autism”.


The diagnosis assuaged the regular bouts of heartbreak I felt at Isaac’s regular bouts of distress. It was the alibi for his perceived anti-social behaviour. But I came to realise quite swiftly that a chasm existed between what some people knew about autism and what most people didn't. If the condition hadn't touched someone, it just wasn't on their radar; autism awareness was minimal at best. On the other hand, professionals, experts and parents who had accepted their child’s diagnosis were awash with facts and immersed in the world of autism.


I joined Ambitious about Autism’s online community 'Talk about Autism' and quickly benefited; questions were posed and answered, discussions launched and new people nurtured with the help of its Community Champions. It became a safe haven from the everyday assault course of discrimination, generalisations, judgements, ignorance, exhaustion and difficulties that parents of children with autism battle.


So what is autism? An impossible question to answer with any semblance of brevity. For last year’s World Autism Awareness Day, Ambitious about Autism ran a Twitter campaign called ‘Autism is…’ asking everyone to share their thoughts, feelings and perspectives on what autism is to them. The answers tweeted invoked honesty, warmth, sadness and happiness – a pretty accurate flavour of what autism really is.


The campaign was such a success that the charity is repeating it this World Autism Awareness Day. I'm supporting it again because awareness is a big deal for me. Things have improved drastically over the last 20 years, but there’s still a long way to go. People just don’t know enough about autism. It affects 1 in 100 children, yet the condition is often misunderstood.


Autism’s myths are myriad. People assume Isaac won’t have eye contact, that he’ll be quiet and introverted, or that he must have mind-boggling talents. None of these statements are correct. Isaac is a boy you remember when you meet him. He is funny, inquisitive, determined - at moments tender and full of wonderment, but also unable to know his own strength at times. He loves to learn (if allowed to in his own way) and he never forgets anything.


For my family, autism has been a game-changer - but certainly not in a bad way. We don’t only have a bright, funny little boy - we have a heightened understanding of disability and other people’s needs too. For me #AutismIs heightened everything – love, sadness, stress, happiness.


My wife and I wanted to do something else to mark the day - the more people know about autism the easier life can be made for everyone affected by it, and of course we wanted to raise money for Ambitious about Autism, too. 


The Happy video above came about because my wife, a musician, received a video from her friend Abigail of her son Reuben who also has autism. In the video Reuben was singing Pharrell’s ‘Happy’, on his own, so perfectly, and you could see the joy he experienced as he sang. My wife decided to make a short film set to the song with Isaac and Reuben doing things that made them happy. Simple and honest, just like any other children. We wanted to celebrate the boys. Autism is something to be respected and acknowledged, but we wanted it to be about the boys having a ball.

Long before my son Isaac was diagnosed with autism at the age of three, I saw how the world, with all its peculiarities and obstacles, was that little bit more hostile for him. Seeing him struggle – often articulated as screams, anger and crying – seemed so unfair to me. I didn't subscribe to the ‘terrible twos’ or ‘naughty toddlers view’; there was something about Isaac’s tears that was different. 

What's normal?

Ruthless logic, repetition and rigidity may pervade Isaac’s behaviour, but interwoven is an element of mystery. Flowing in, out and around the factual chunks that constitute the bulk of his thinking, is an indescribable, impregnable strand of his personality that we can’t hope to get a handle of. This otherworldly trait - this outlier of a feature in his brain - can at times cast a spell on Isaac, making him rarely readable, obstructive and ever so slightly out of reach.

Often, on close inspection, when there is a mysterious onset of distress, discomfort, defiance or aggressive avoidance that can so baffle us, so weary us, it can actually be attributed to autism. Albeit in its most extreme and fascinating form. Like when he witnesses a barely noticeable change to a thing or things that we haven’t accounted for or think we can dodge.
For example, he has close to a hundred small video clips he’s made on an iphone of his train trips. Handing him the phone, his after school treat he’d spent the day fantasizing about, I realised I may have deleted or discarded one. But it was too late to reason with him as he swiped and mentally scanned the swoosh of barely distinguishable mini-still images of clips in one fell swoop of his skinny finger. Noticing in a split second one wasn’t there. Cue tears, frustration and collapse. Kicking with rage. A demonstration, not particularly appreciated by us at the time, of his extraordinary visual, photographic memory – particular to autism of course. An eye for this type of detail is practically incomprehensible to me.

Talking of his visual capabilities, any tampering with his visual mind map (which connects him to the world) places his world out of kilter - eliciting rash behaviour that can appear mysterious without a forensic done on its causes. (He sees the world the way an unfocused camera does, taking it all in, painting a picture in his mind, so everyone and everything he sees for a second time or more is in context; it’s one of the reasons he yearns repetition and feels safe and sound with it).
So when a rushing tube train was missing a tiny yellow sticker warning of objects being trapped in between doors – something I had been blissfully unaware in all my decades travelling the tube - on a stationery train let alone a moving one – he was uncontrollable with sadness and insecurity. Now, he’s learnt to put a positive spin on anomalies like this, becoming uncontrollable with glee and giggles, when he sees it ‘Look, daddy! No sticker! Train’s got no sticker!!’ Progress.

Equally, he can appear summoned by strange - invisible to me – similarities, like the time he became agitated at dinner because there was ‘a monster, with big starey eyes’. Things settled when we realised two innocent bagels and a bread knife sitting in close proximity to one another, were the culprits.
The triggers therefore for what can appear mysterious behaviour can be located in a semblance of logic. But only with exhaustive analysis. And often, when he throws himself into a prolonged bout of stimming (self-stimulating behaviour) of train sounds, flapping hands, seeking reflections and sensory fulfilment, one can but be mesmerised by his whole, daunting world. Autism is a sensory processing disorder, and often the chaos and colours of our world simply bamboozle him. He needs to retreat and reboot for whatever reason he cannot articulate. In his time, in his way. “Don’t talk to me, daddy. I’m a little bit busy” will be his delivery to us, in earnest.

Maybe all this mystery is what led Autism expert, Uta Frith, to evocatively refer to children with autism as having a ‘fairy tale like quality’. There’s certainly a perceived magic to autism, a wondrous quality. So much so that some people honourably celebrate it above all else.

It would be dishonest however of me to make the same claims. To talk endearingly and exclusively about the magic of Isaac’s autism would be a sleight of hand. I would be deceiving myself. The truth being that in the early days, if I could have waved a wand and made ‘the magic of autism’ go away, I may have done.
Too much pain has occurred, too much worry lies ahead for such sentiment. Too much pining for little pleasures like play dates, parties, and knock about care free fun that I’m too feeble to supress successfully; the consolation that he’s content to miss out, tepid comfort at best. Too many experiences where we just can't brook the dam-breaking tears. Too much time selfishly feeling stultified by the shackles of routine, the hours spent on trains (a treat for Isaac, at times a tedium chamber for me) weekends at home spend wondering, What if?

No, autism, for me, is about reality, not magic.
Our obsessing of Tabitha, Isaac’s sister, lands a heavy blow to any beautifying of autism anyway. At six months old, assessing any signs of the condition is perhaps futile. Still, we struggle to not put an autism filter over every tiny thing she does or doesn’t do. Eye contact, eating, initiating gestures. Poring over pictures of Isaac at the same age, looking for clues, doing detective work like some sort of a crank doctor. It’s driven by an oppressive fear that if not tamed, could override everything we do, feel or think. So far, so controlled. But when I can’t halt my darker trains of thought of imagined missed developmental cues and subsequent similarities with Isaac, I hurtle to a precipice.

Which all bears out the truth that autism is not something I wish for. However, wishing autism away from Isaac? That’s something different entirely.

Autism is a condition to respect if not revere; restricting it would be doing Isaac a great disservice. And yet, I find myself in a place where it’s felt Isaac’s autism should be managed somewhat. At worse, this feels like a normalisation process, where fitting him into our world is the ambition. At best, it may push him comfortably, towards that oft-repeated but vitally important position of ‘reaching his potential’.

This quandary hit me like a rocket in a whirlwind 24 hours very recently. We had a meeting with his teacher at his mainstream school, where the talk and feedback was overwhelmingly positive. Our hearts melted as his teacher told us how Isaac had ‘pressed a soft button in his heart’. Small steps to socialising were taking place. His learning was improving speedily and convincingly. Discipline wise, things were looking up. He ‘didn’t have a naughty bone in his body’. Tantrums happened but diffused with minimal fuss. Misunderstandings were being ironed out.

But then, the talk teetered on pushing Isaac that little bit harder, challenging that little bit more. I can’t stress the goodwill, application and drive of his teacher and the school in general. But my sensitivities arose, my ‘normalising’ autism antennae were on high alert. Isaac was coping in the playground on his own better; less and quieter stimming, was seen as a major positive.
Underneath this steely resolve Isaac was showing, is there, however, a fragility that ferments until set free at home? After school he has become tremendously trying. Mysterious bouts of negativity ooze from him, desperately hanging on to the minutiae of routine, hoarding his magazines, eating even less than normal. His lunchbox often remains untouched despite his now ‘integration’ into the dinner hall. The noise he may be managing, but to the detriment of his diet. These are the fine details of autism not everyone grasps.

His playing with other kids was seen as another positive but was in a context of obsessive dependency on certain children that they were ‘dealing with’ by separating him. Isaac’s gambolling when I drop him off clearly grates the other kids. How much do they know about autism? Where are we going with all this?

A kind of conclusion to our meeting was a nod to how you couldn’t spot some of the kids with autism in the school. This assimilation as a kind of badge of honour. This attitude was indeed honourable if not misplaced. I felt some concern. 

The antidote to this was the next day and a visit to one of a very few schools specifically for kids with high functioning autism and Asperger’s – kids like Isaac.
As we were shown around by one of those people whose affinity with autism is astounding, I struggled to stem the tears of hope. Expressive and reacting to the teaching, full of questions, these pupils’ autism was being handled exquisitely as they were able to break free when need be, talk in their own way, receive occupational therapy; at all times they were cajoled by professionals correctly and compassionately.

Highly, highly emotional, I could see they were happy, focused, cared for and celebrated. In fact, I could actually see Isaac in them. This was something I hadn’t experienced before. Usually, when I’m peering in from the periphery at family functions, disconnected from the dads-and-lads larks and japes, the boys I witness seem a different species to Isaac at times, so made-for-the-world they are, so conventionally developed with their dialogue.
In short, when I entered the school I felt like I’d discovered an autism-friendly, safe and very special whole world of learning and love. Normalising, the pressure to conform had no place. Yet life skills and the curriculum were at the core. Somewhere full of potential, free from the burden of fitting in.
Isaac has a lifelong condition that, for all its peculiarities - some predictable, some mysterious - means he will always be different to a degree. My job is not to smooth out those differences, however hard they frustrate me and him. Isaac is an effervescent boy – to crudely normalise him to fit into our world, would be to flatten that sparkle in him. And that would be unforgiveable.

Schools of thought

The autism journey is anything but straightforward, perhaps the sole certainty being a succession of learning curves lurking at every juncture. The ones that kicked off concurrently from diagnosis we’ve conquered competently. Like a basic understanding of the traits, and a persuasive narrative for friends, family, and teachers at the time. Whether they’d been previously disturbed by his development (or lack of it) or in denial about it, or indeed, both.

Other learning curves linger longer and there’s no correct way to climb them. Like how to campaign for awareness appropriately; a political and sensitive issue, with something bordering on a consensus to acknowledge. Similarly, the (ironically complex) curve of dealing positively with the very unlearned concept of prejudice and its many forms is a tough one. Multiple, mini mountains of misinformation abound.

But, for me, attempting to understand autism’s effect on learning itself – and specifically Isaac’s - is the one learning curve that dominates, overriding most others. Informing and instructing them. A learning curve we’re lumped with for life it would seem.  It’s resilient and recurring. Stubborn, steep and something we slip down, just when we think we’ve mastered it.

Isaac’s learning abilities are riddled with contradictions. He has a fascinating facility to absorb information, process it and repeat it back. That seems to be multiplying by the day. His latest skill being a walking-talking calendar describing the dates and days ahead in substantial, miniscule detail. Delivered earnestly by rote with formal verbal flourishes like ‘hmm, that will be a very good idea’ and ‘now, daddy, please listen, on October 4 you’ll collect me from school with Daddy’s phone in your pocket. Please say yes’.

Idiosyncrasies are arising of course, like his incredulity at inconsistencies, impossible to explain, such as the number of days in the month: ‘but 31 has to happen’ was his opening gambit on October 1. And any event in the past whether 10 minutes ago or 10 months previously has to be referred to as 'yesterday'. That I’m going to give him a bath on December 25, after Father Christmas has been, is not so much pencilled in as tattooed into his mind.

The benefits of his brain’s linear and logical leaps of learning are felt enormously for my family. With our collective abilities to successfully plan and keep to a routine now comprehensive. Without a doubt day to day living is calmer and more joyful as a result.

Yet other, more opaque areas of his learning appear to not be keeping up. He can count rapidly to way beyond 100 in groups of 3s, 5, 7s, but unless he’s literally and visually learnt the simplest of sums, he will struggle to answer them. Similarly he can read and read back pieces of text, thanks to his vast visual memory. Phonics are his strength so his sight reading is improving. But he cannot write or create words. And plots of stories however simple seems to pass him by.

Inquiry and imagination are in their infancy. As is improvisation in dialogue. Responses are phrases learnt – sometimes charmingly jumbled. Anything demanding coordination and motor skills from riding a bike, to tying shoelaces, to handwriting, are beyond his ability and interest. However when it comes to naming things like tube trains, their lines, and being able to recognise them, he’s a scholar.

I can only compare him to a hardworking, functional computer whose operating system is about words, numbers and storage. Vast amounts of it. Its capacity for inputting and processing data considerable. But lateral, abstract, hard-to-pin down human dissection and discussion not apparent features. Indeed, try to programme intuition and sociability, and his operating system slows to a halt.

Complicating things further is his unpredictable propensity to apply himself. Head first, focused, obsessive if he wants to, and the environment is sensitive to his sensory inconsistencies, enabling him to utilise his visceral desire to document and memorise. (Making films on an iPhone of him watching trains or in fact doing anything mundane and then watching back many, many times is his current passion. And is the most effective incentive when we want him to so something – anything!)

But equally he can be distracted and perhaps perceived as disobedient, if he’s not 100% absorbed in the task at hand. Extremes.

So the strands of learning that align in most minds and as a result everyday life caters for, is simply not his experience. He doesn’t have a collage of cognition in the way typical children do.

And it’s within the landscape of a muddied education system that these inconsistencies of his learning will be most severely tested. School is the lightning rod for a child’s immediate, long term and wider development, his potential, his place in the world. A balanced and responsive-to-his-needs learning environment will create a smooth a path to what we yearn for him. However, I’m aware how challenging that can be, his brain wired so differently to a typical child. My greatest fear is he doesn’t receive the extra support and care he needs if he’s at a mainstream school; or that wider learning and sociability may evade him at a specialist school. And either could leave him stranded in an education hinterland.

I abandoned dreams of him cutting a swathe through school a while ago (should I have though?). It doesn’t mean he should be cut adrift in an education system that can’t deal with the vagaries of autism.

The truth is, at this exact moment in time, as he begins Year 1, I am grateful that Isaac is receiving an appropriate education in a mainstream school that is adapted around him as much as it can possibly be – when you take into account 25 classmates, none on the spectrum. I appreciate I have barely dipped my toe into the rough, unpredictable waters of an education system that so many parents are drowning in unfairly. This is my personal experience and it could all change tomorrow, literally. I know that.

Based in Brent, where Isaac was diagnosed, professionals have mobilised around my little boy with a verve and industry that I rarely experience. Accessing these professionals, a high and daunting hurdle through no fault of themselves, was a mission singlehandedly fought by my wife. And once achieved, critical interventions like speech therapy pretty much saved Isaac and transformed him. The Brent Outreach Autism Team (BOAT), is a battalion for parents like us, its purpose representing children with autism in the mainstream education system. Lobbying for them, getting the right teachers, training them, getting support, linking with the school. Always on the end of a phone, the slightest autism unfriendly event can be reported to them and acted on with alacrity.

The yield of this is Isaac is a contented pupil at a school well versed in autism and special educational needs (SEN).  An enthusiastic, accepting yet firm approach means he is pushed but not too hard. His 26 hours designated extra support from a Teaching Assistant (TA) is always at hand but autonomy for Isaac is advised wherever possible. His teacher is confident with him, with his own strategy for what Isaac can and can’t do, one not swayed by potentially over concerned parents. Indeed little bits of independence like walking without us into class have been put in place, successfully and without distress. Our anxieties in the main have been assuaged.

It’s a critical year, of course. With this age group on the cusp of major numeracy and literacy sophistication. His teacher has faith in Isaac and I must. He’s holding a pen and ‘squiggling’ which I wasn’t confident would happen. Despite him clearly being behind his age group in these areas, he is having support in them and developing.

His professorial speech and memory are acutely autistic though. One of Isaac’s outreach workers, Jemma, whose championing of Isaac is unswerving and inspiring, observed something intriguing about how his methods defy mainstream ways of learning. She explained that there is a conventional wisdom that links handwriting with how most kids learn to read – whereby making the shapes of the letters liberates words off the page so to speak. However, she noticed that this is not the case with Isaac. He can read - not just competently but well above average for his age group - yet can barely use a pen, let alone write a word. Perhaps this is due to a mixture of taught phonics and his own self-taught marvellous mind at play.

An ambivalence towards teaching methods creeps in, rightly or wrongly. Does his autism demand alternative approaches? Is he missing things that are being taught and are the school missing things that he’s picking up? (However, teaching at his school does benefit him broadly, giving him opportunities for reading, numbers, behavioural cues - that’s for sure.)

So I have reservations. A raft of them.

Occupational Therapy is something he’s (physically) crying out for. Traces of it are hazy. Would an intensive, continual course of this complement his main learning? Actually, is this an area that must be incorporated into his curriculum, a permanent feature and even support worker?

Having one on one support in the form of a TA is vital. Especially at lunch, when he can attempt to eat in a small group away from noise and disruption. But the TA is of course not a trained autism specialist. Would that make a difference? Play too his strengths more? Or could it hold him back if he’s kept too cosseted?

In a specialist school, where they understand the autistic brain supremely, may they be better placed to furnish his mind with skills better suited for him? Make more use of his obsessional approach. Or is this fanciful?

At school, they are having a modicum of success weaning Isaac off his repetitive behaviour – rapidly waving his hand in front of his face, making train noises. This is a behaviour he needs and it relaxes him. Would another school embrace it and tolerate it more. Is there an answer? Probably not.

Hugely helpfully, the issue of Isaac’s learning has recently been best summed up by the head of Isaac’s school. Only the parents of a child with autism know exactly what’s right or wrong for their child. If they are lucky enough to have choices they are the only ones to make them. What we must do, he advised us, is try to avoid a time when we have no choices. When we must make a ‘distress’ purchase and leave a school because it’s unbearable, with nowhere to go. And with that he advised us to always seek out different learning environments, schools to his own, so we’re prepared. Which is what we do, keeping us just ahead of the learning curve.

How do you value friendship?

Calculating Isaac’s capacity to conduct conventional friendships is as head scratching as the most complex of conundrums. He possesses scant ability to adhere to the rules and formulas of sociability innate in most of us. Explaining the essence of friendship such as sharing and symbiosis is tantamount to talking in a foreign unlearned, un-contextualised language. Fruitless and thankless.

Yet so often, Isaac is a roaring and adoring, larger than life social animal. Attentive to absurd games, ball throwing and bouncing, often his creation, always on his terms. All eye contact and breathless laughter. Infecting all in his wake with his own particular brand of jumping joy. Just ask his autism-informed, well drilled army of cousins.
It’s just that he can retreat into the solitude from the social swiftly and alarmingly. His universe-falling-apart meltdowns may appear indiscriminate, immediate and scary. His is a topsy turvy world where we are not what we seem to him, and him to us. Where who he’s touched by and who he touches seems arbitrary. People are bewitched by his personality or beaten by it.
A forensic of Isaac’s behaviours throws a spotlight on how ill-equipped he is for maintaining a friendship in the way we, as typical humans, believe they need to be. And may explain a reluctance to initiate friends, rarely referencing them, appearing content in his world.

Take eating. Isaac doesn’t appreciate his appetite; he’s barely aware of it. Articulating hunger is extremely unusual, unless repeating a phrase he’s heard. As such he has a finely balanced diet – resolutely at room temperature, ordered, bland, fiercely familiar – if anything’s off balance, it’s all off limits. Profoundly, from a social perspective, the process of eating is as fussy as the food itself. If the circumstances aren’t particular, he simply won’t eat. Or engage.
And of course, eating is that most convivial of acts. An organised chaos that slots into a code of human togetherness. Right from the early years birthday parties, eating is a focus – where kids feed their friendships as much as themselves.

Before diagnosis, we’d despair of the malcontent Isaac, screaming, not eating, not still, whilst his peers ate cake, giggled, bonded, shouted and got this rite of passage totally right. Now, unless seriously stage managed, these gaudy, noisy affairs are avoided. Just hearing Happy Birthday sung differently to how he last heard (which it invariably will be) sends his strict, catalogued mind into mutiny.

His visual memory antagonises further, I would guess, so whenever he witnesses eating in groups now, he associates it with chaos and discomfort, thus explaining his unwillingness to be a part of things more often than not. Family functions see Isaac eat alone and away with only an iPad for company. Not eating together means not forming friendships, alliances and mischief.
This is magnified at school, where the dinner hall, with its clutter and shrill sounds, disturbs him too much, meaning he has a picnic with his Teaching Assistant. Quiet and separate. As a tactic, thoughtful and heart-warming. Ultimately though, him missing out eating with others is him missing out on making friendships.

The school lunches have fed his obsession for repetition. He mentions lunchtime the minute he arrives at school, needing affirmations and confirmations throughout the morning. By seeking safety and security through this lunchtime routine, friendship has perhaps been sacrificed.
Isaac’s physicality, his love of jumping and squeezing and bundling, has probably landed a blow for friendship too. It may just be over zealous hugs, but unable to channel these acts into organised physical play, the coordination, motor skills and learning perhaps too demanding, it can express itself keenly onto the other children. Despite never having an aggressive or sinister flavour, at worse he can be seen as a pugnacious presence that teachers attempt to manage through the toothless tools of explanation and discipline. He’s rather left out on a limb.

So eating, obsessions, repetition, routine as well as rough play – all critical to conventional sociability - must go some way to explain his lack of friendships. They mean he is missing important windows to learning social cues. The proof is his persona, and how he is – and isn’t - with his peers. Isaac’s propensity to play with his peer group is paltry. He appears to have no need for them.
Who knows when and if he’ll need them, and in what form. When I dare to look ahead, lying in wait are scary realities that risk a friendship desert. Isaac could well be the chief teller of tales, considering how honest he is and will remain. Not a perfect role for the playground. As sarcasm gains serious traction, Isaac could lose whatever hold he has of childhood chatter. However much he adapts to surroundings, he could well need to flap, and chant, ape and repeat. Right now there appears to be a fondness of Isaac’s foibles among his school group. Indeed, the school do say he is beginning to show the signs of forming friendships; with adult support this could happen. But will they be in place before the currency of friendship shifts from accepting to alienating?

Maybe friendships are and could remain just too onerous for him. The codes impossible to decipher. Intuitive and conflicting. It explains why he seeks the solidity of inanimate objects as opposed to the unpredictability of animate ones. Stuff over folk.

How about this though: What if reading people and all their peculiarities is only half the story to making genuine friendships and connections. Or indeed the wrong half. Perhaps how we view and define peer group friendship is narrow and niche.

Because as I’ve said, Isaac is very much a social soul. And it’s who his visceral and intense playful experiences are with that’s instructive. When friendship is distilled to a simple positive interaction with laughter as rewards and absolute attentiveness, Isaac’s connections can be electric.
Demonstrating his wonky position in the world, Isaac thrives with kids younger or older than him. And adults. Like that of his sixty-something grandfather. One of Isaac’s truly authentic, unreconstructed best friends. Someone who will be the centre of Isaac’s world when he’s with him, because that’s where he plonks himself. In Isaac’s eye line, responding, cajoling, communicating, and collaborating. Large and loud and in each other’s faces, this pure play is rewarding for both grandfather and grandson, because both give their simple, uninterrupted all.

It’s not just about getting on Isaac’s level (literally). It’s about entering and immersing himself in Isaac’s knock about, shouty, loving, learn-through-zaniness personality. Words and numbers jostle with japes and slapstick. It’s exuberant and exhausting. And give or take some flung spectacles, hugely, hugely positive.

These shows of affection and connection demonstrate how, rearticulated and redefined, friendship is obtainable and straightforward for Isaac. In fact, distil friendship further into a simple altruistic act of being tender and loving though, and Isaac’s sociability is supreme.
Because nothing demonstrates Isaac’s huge reserves of love and affection than the adoration – and little obsession – of his newly arrived younger sister, Tabitha.

Isaac was perfectly programmed for her arrival. To be tender with touch and to show love. To not be alarmed by crying. To know that mummy would always be with her. Brotherly instructions were inscribed into him. And now he behaves utterly beautifully with her. It’s as if a conscious learning to show love has brought out a dormant but vast natural ability.

“Can I kiss Tabitha?” is the question most heard in our household. Followed closely by “Can I carry Tabitha…all by myself.” Both of which he does do determinedly and intently, but, I would fathom, without an ounce of malice or revenge or attention grabbing. All emotions I imagine can play a part, but have been absent here.
(Now’s not the time to mention his insecurities that are running amok. Manifesting themselves into a heightened need for routine, defiance and more inflexibility than usual. The point is that there is a pure love for Tabitha.)

His responses to the crying are to implore us to change a nappy, or feed her. He observes a lot, and comments on what he sees.

“Can Tabitha come with us?” has become as much a request as a need for reassurance. He loves the way she smells and feels. He talks to her: “Look at the train Tabitha”. It’s ever so gentle and true to his focus and obsessions, a scream from Tabitha will have to be particularly ear-piercing to halt a train he’s playing with. He talks of nappies and cleaning. He needs to know she’s about. A permanent presence.

And whether I am seeing it or choosing to imagine it, there’s a definite and distinct way she looks at her older brother. For long periods of time. Knowingly, lovingly, protectively. What I like to believe is she’s detected his compassion, and is communicating it back. What I’m sure of is it’s the beginning of a most wholesome and genuine and transparent friendship.

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Autism and thinking differently

For the mood music in my family’s life to be jolly and upbeat, Isaac’s autism has to be acknowledged to at all times. Slip ups in routine, plans going awry or excessive elements of surprise, and the rhythm’s lost. There’s disharmony. Probably upset.

And as we increasingly attempt to take Isaac ever so slightly out of his comfort zone, a complete grasp of the condition is demanded more than ever. When to take stock of his sensory needs and rein in the physicality? To simply embrace his considerable ability to memorise vast quantities of information, or to evolve it into something more challenging? Grip a pen, knowing the limits of his motor skills? Or let the tablet be his writing tool? Our responses to these types of challenges oscillate by the day.


So Isaac’s autism informs my every move. I think about it at all times. It dictates my decision making, dominates my diary. What we’re doing, where we’re going, how we’re doing it. Food, family, fun.


In short, take autism for granted - and it take you places you don’t want to go (again).

But what about my deeper thoughts and even attitudes. Beyond the day to day running (about) of family life. Autism has altered my behaviour, but has it influenced my beliefs? After all, whilst I’ve always had causes that are close to my heart, autism is something that clings to my heart.


Well, there has been a very visceral effect of that emotional connection. One that’s been forced on me by others as much as myself. Which is a heightened sense of sympathy – sometimes shamefully bordering on sorrow – for any act of defiance in a child. Tantrums, visible frustration - where some think a kid brattish, I, rightly or wrongly, imagine a child in need of comfort, comprehension and consideration.


This now entrenched opinion is of course based on early experiences. When I would be forcibly manhandling a fighting but forlorn Isaac in the days where we were both fumbling about at the condition’s fringes. When time suspended, the traffic stood still, and everyone stared our way. These events are not so often now, but the experiences wrote themselves indelibly into my consciousness.


I do feel a sadness at people’s paucity of generosity of spirit. Imagine if a supermarket meltdown was seen as a misunderstood child rather than a misbehaving one. Imagine giving the child the benefit of the doubt?


Children with autism are not often naughty; that’s an official description of a trait that can form part of a diagnosis. How unfortunate that naughtiness in a mistaken label that children with autism are so often given before any diagnosis. It’s a hard fact that’s contributed to the softening of my attitude to children, however boisterous and seemingly antisocial.


So any deviance of behaviour in a child I see as vulnerable and needs treating as such. It can weigh heavily on me. Just seeing a screaming child being dragged along by an exhausted mother can depress me for hours.


Building on this new found sympathy is a compassion for - and appreciation of - vulnerable adults too. Nutters, weirdos, loners. Odd bods talking to themselves, loons howling at the moon. Observations and language that may once have been the preserve of the comical, is for me, now cruel. Where I now see someone who could be on the spectrum I used to see someone who’s probably 'a bit mad' - whatever that meant.


Isaac has his own dialect of train sounds, counting numbers and repeating phrases coupled with his compulsive commentary of events, quizzing people for confirmation. He runs by walls, rolling his eyes to satisfy his sensory seeking. To manage stressful scenarios. To block out cacophonous noises. We see these as a coping mechanism crucial to his equanimity. That may diminish as opposed to disappear as he gets older. Benign souls may see these behaviours in a near six year old as cute quirks. The time could well come when the majority witness what they feel must be weird tics and deluded dins; the hilarious chit chat of a fruitcake.


As a person then, my moral compass has perhaps been pulled towards a more sympathetic and compassionate place by an autism force (and quite possibly other special needs as well as mental illness). But there is something more profound at play than this. Isaac’s place in society, as someone with special educational needs, has been shifted to the margins, a breeding ground for prejudice and judgement. Where, unsurprisingly underachievement is rife. I daren’t decipher the dependency, unemployment and exclusion narratives associated with children and adults on the autistic spectrum. The budget cuts, worrying lack of Special Educational Needs (SEN) provision, the need to normalise and more.


Through Isaac, I have assumed the role of the underdog in society. Which has had a significant impact on my beliefs and attitudes.


Autism doesn’t discriminate. And therefore, nor can I. Our family is now part of a society glued together by what our children are experiencing and we are battling. The apparatus we need to build and maintain our lives, an anathema to other people’s. Helping galvanise our voice, and aid us individually, are speech therapists, nurses, outreach workers and teachers. Inspiring, determined professionals. Who use their encyclopaedic knowledge to help Isaac thrive – for example through tailored and group speech therapy sessions that teach parents techniques and strategies too. And who also bravely and courageously carve out the opportunities my boy deserves. Be they one on one support, teaching assistant hours, a place in the correct school.


Because by entering the landscape of autism the asymmetry of society been so glaring to me. Perhaps for the first time, I find myself on the losing side. And the constant quest to win rights for Isaac, just to get him to a level playing field, has given my attitudes and beliefs a re-boot. To strip myself of stereotypes because I’ve had to, but also to not pre-judge in a singular, straightforward pursuit of fairness. For me and for all. Through a fairness prism is how I now view the world, what I want from it, things I commend and things I deplore. An unreconstructed sense of fairness. Which is of course subjective; my sense of fairness will be different to anybody else’s.







The best articulation of this is through my experiences with the educational system. A system that’s complex, contradictory and confused.

If I didn’t have a child with SEN, like so many others I would be entrapped by the oppressive catchment area system. But with Isaac’s diagnosis, we have a wider choice of school in the borough. That seems fair.


Not everyone would agree. In an extraordinary episode, a local mum, perplexed that we were looking at a specific school not in our catchment area, quizzed my wife. When she was told that Isaac and his special needs allowed us to look at the school without having to live in the pricey catchment area, she brazenly and boldly said 'how incredibly lucky' we were. Everything rotten and unfair about the educational system was encapsulated there and then.


The big irony though was despite our opportunity for Isaac to leapfrog his way into an exclusive but state run school we chose not to. Why? Not because this non-selective school was hostage to the well-heeled inhabitants of one neighbourhood. (Though that I did deem unfair). But because it had a weak, fairly periphery SEN provision.


Isaac is actually at a school that has a dynamic, brilliant SEN provision. It also has a high proportion of pupils who have English as a second language. That pernicious phrase used to mercilessly flog Inner London failing schools with. But something I only see as a healthy feature of multi-cultural living.


When Isaac started school, his English language was limited and weak, considerably weaker that many kids with English as their second language. The prejudice of course compounds when the talk is of parents at home not speaking English to their children. As parents, we were struggling with the modelling and other techniques therapists had taught us, to assist Isaac with his specific learning. Effectively another language. By seeking what’s best and fair for Isaac, I’ve always seek to dismantle the discriminations that clog up chatter.


My hope has not been lessened though as a result of Isaac’s autism. On the contrary. When Isaac left what was a private nursery that morphed into high achieving factory for private schools, there could have been a formal, awkward parting of ways. His time there, during and after diagnosis, had been fraught and emotional for all parties. He was going to a school less than a mile away geographically, many more miles away metaphorically – the schools had never communicated. At all.


But the head of the nursery, enlightened by her first experience of autism, reached out to the head of Isaac’s new school. A relationship started between two previous strangers. One assistant at the nursery even being invited to do a placement at his new school. This show of compassion and thoughtfulness between two very different schools would not have happened without Isaac and his autism.


More importantly, Isaac had built a bridge. A small one possibly. But a bridge nevertheless towards a fairer, more open world.


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