Why I keep talking about Isaac’s autism

Will I feel comfortable with Isaac being aware of this blog as and when he acquires the ability to?

That I’m actually penning this pontification suggests futility writ large. It’s too late for any lamentations on my part. Fortunately I’m far from beating myself up for publicly tussling with his autism and its many manifestations. For his, and our, sake, sensitivities that shouldn’t be shared are silenced by a thorough filtering process. My instinct for appropriateness remains impact.

The question (nuanced rather than in unreconstructed form) has therefore acted as a gentle leaver on the moral compass if you like. Not that it was needed at all in his early days. Chronicling them demanded a frank, exposing honesty such was our raggedness – with raging against society’s stares going hand in hand with amplifying autism’s awareness a matter of Isaac’s human rights. Intensity informed everything and I felt compelled to communicate all we learned. I wouldn’t change a smidgen.

Indeed, Isaac’s physical and mental being is full to the brim of ever changing behaviours and abilities. That will continue to be themes of his autism and dyspraxia throughout his life. His impairments, sensory challenges, obsessions and anxieties; his charm, magnetism and magical memory; the logic and literal, the deliberate language delivery and fabulous turns of phrase. To understand his wiring is to (metaphorically) untangle it. Neurological, social and physical truths I’ll forever feel the need to talk about, however tough and testing.

As he approaches nine however, the question devolves from what I singularly (as a father) say about him to something more pluralistic. Maybe not a question, more a constant consideration that whatever I say needs a degree of respect and parity with his own opinions, profile and personality. How, if at all, will he feel, be aware of, love, hate, tolerate, tame, embrace, enforce, his autism. It’s his journey, my part must, as much as possible, be curated by – at least be in conjunction with – him.

The trigger for treading this, if not new, then perhaps more tentative, path was a peculiar phrase Isaac brought home from school recently. Delivered in a learnt silly voice, with scripted accompanying laugh, he announced (over and over):

“Willy Wonka’s got autism.”

Bizarre sayings besiege Isaac (a modicum of meaning is barely called for; there’s a compulsion and repetition that satisfies an urge). Hearing him say one with (the word) autism in it gave it uncommon clout; the decibels dealt quite a blow. Engaging him in what he thought autism meant led to a dead-end however. Conversations often call for Isaac’s control; the to and fro-ing of fluent dialogue disorientate him – especially when it’s all a little abstract and unattainable. With no natural start or finish, the flow of chat must seem like a whirlpool. This would be one of those occasions where he won’t dip his toe. Effortless for me, endeavour for him.

Such is our real time – forever on and forever fruitful – relationship with school, they are always alert to little aberrations like this.  Isaac probably didn’t have a knowledge of autism, some boys in his class may have. There was certainly no Charlie and the Chocolate Factory revelatory autism story though.  A semblance of self-awareness was seeping into him. A healthy, in hand, observable occurrence that always happened to boys at Isaac’s school.

Isaac’s school. If, as from his bewildered, tiny face seconds after birth, through the distress, social challenges, seeking for patterns, rigidity and more, it can sometimes feel like Isaac is the boy that fell to earth, then his school is the gift from heaven. They’ve assiduously assembled an apparatus around him that’s robust, inspired and ingenious. Cementing their second to none autism knowledge is a pastoral care, appreciation of the condition’s mystery, as well as a dose of resolve and reality.

So much so that on the occasions I pick him up, I find myself in a jubilant state – flushed with the endorphins of expanded expectations; his jolly, sociable, developing self being clear to see. In fact the narrative right now is Isaac is nowhere near his glass ceiling and deserving of lofty ambitions.

And it is in the context of Isaac’s school that I return defiant to the question of my confidence in Isaac being aware of my public utterances about him and indeed openly discussing autism full stop. It appears part of the school’s wider strategy to confront the comfort zone of autism without compromising it. That, whilst appearing paradoxical, to push him is to protect him.

 

 

Seemingly the standard bearers of autism’s place in the world, the school’s stance offers me a tonal road map. As I say, I don’t believe I’ve strolled off it too much these last few years. It’s just that for now, in this moment, everything I say feels like it deserved to be through the prism of potential.

 

“I love trains. They make me happy. Do men drive trains or are there machines inside that do it? Do the engineers build the track? I want to be the engineer. Knock, knock, who’s there? Morden. Morden who? Modern via Bank”.

Isaac is often in possession of a one rail-track mind. To stem it is to leave him ferociously frustrated, unfairly so. Equally, as championed by school, to dwell on the obsessions, means they fester, he gets entrapped in them.

He’s taken to – “as a way to relax after school, daddy, I need to write about transport” – typing the entire tube map completely from memory; effortlessly, at break neck speed. All the stops, their intersections listed, in perfect order; of all the lines; north, south, east and westbound. It’s a preposterous skill really. Mindboggling in its depth and dimensions. His photographic memory transposing the visual into perfect verbal form.

Cognisant of his obsessive need to create such pieces of unconventional prose, I don’t compliment him too much, despite an inability for my pride in his talents to not reach preening levels. Besides, he desires no congratulations and would deflect then to the point of disobedience. “No, no, it’s not clever. It’s transport, I want to put the piece of printed paper I’ve typed the information on in my room, so no-one can touch it,” he’ll hurl with typical histrionics.

So how to harness this passion that can be on the precipice of pointlessness?

In this case, success has been achieved by introducing some social skills. His octogenarian grandfather, Papa Paul, is an enthusiastic, kindly man, whose interests and generosity are varied. One of which, trains of all shapes and sizes and vintage, is something I, in a previous less informed, less responsible life, gently ribbed him about. Now I strongly reinforce it, aware as I am its vital purpose as a social tool.

Isaac and Papa Paul watch train DVDs quizzing each other on stations, chewing the cud over stable sidings, musing signal systems. It’s liberated Isaac from a tight school pick up schedule, Papa Paul collecting him a day a week now with the promise of train talk. “I want to be like Papa Paul,” he’ll say with vivifying sincerity and honesty.

This marshalling of an obsession into something positive and social, is one of many small but significant steps Isaac is making. Repetition is different from routine. He’ll always thrive from and need routine. So a regular collection from school incentivised with train stimulation is a wholly positive development.

Social learning can be laborious and counterintuitive for Isaac. But his place in the world depends on reaching a certain level. Being importunate with social learning is therefore of the utmost importance. Whilst noting the differences of course:

Reward of friendship is wayward with Isaac – the innate skills of reading body language are invisible, regulating himself from cavorting, physical play is a fierce challenge, reciprocation is not part of his natural make-up. Perhaps all this goes hand in hand with the esoteric concept of social currency; something so yearned for in typical children, appearing of limited value to his self-confidence. Yet we do have some foundations in place that could start to paint the broad brushstrokes of potential. Music, he loves; cataloguing and remembering in the main. Any playlist on popular radio he knows in full, “this song we’ve heard already, sometimes you hear things more than once,” I hear a lot on a long journey, DJs’ propensities to play songs over and over, a lack of imagination irritating Isaac slightly. His knowledge, I know, could stand him in prime social pecking order, in time, “this is Hair by Little Mix featuring Sean Paul – I’ve seen it on music television and am listening now to Capital Radio Extra.”

Just being a minor part of the conversation about autism – with Isaac implicit naturally – feels current. In a world where adults with autism are becoming advocates, employers are being encouraged and the Lancet talks of neurodiversity, the public consciousness is rightly being prized open by a previously marginalised autism world. Equally, awareness remains too low, rights are abused, integration can be pitiful, appropriate education denied. A degree of postcode lottery and council inconsistencies mean Isaac has the fortune of a deserved education. It’s devastating to think of the swathes of children with autism who sit inappropriately in a mainstream, unfocused world. For that alone, speaking openly, loudly, disruptively, about autism and Isaac feels crucial.

 
(I always try to respond)

Peter Mishcon

Dearest Matty… Another chapter in your log of Isaac’s struggles and achievements is out there. With so many good reasons you praise his remarkable school and highlight the unfairness of the inconsistency in local provision, but, as usual, you underplay (and not just in your public utterances!) your and Eliza’s consistent, strong guidance through the enormously challenging labyrinth that is Isaac’s autism.We know first-hand of the exhaustion, frustration and worry for the future, yet increasingly (and often magnificently) we get a glimpse of Isaac’s extraordinary – and developing – qualities and abilities.Today Isaac, through your hand and voice, lit up the page as never before. For him – and for so many others – keep talking. ‘Crucial’!
Aug 24, 2016 6:45pm

 

Matthew Davis

Bless you, Peter. I so appreciate this thoughtful, elegantly written message. x 
Aug 25, 2016 4:51pm

 

Can Judaism play a role in Isaac’s life?

As a fairly steadfast secular Jew, religion in its singular, most fundamental form was never going to be an (al)mighty force in Isaac’s upbringing. Secular Judaism serves up head-scratchers of, well, biblical proportions though. Anyone well versed in it knows that psalms, texts and liturgy form but a slither in Judaism’s complex cultural kaleidoscope.

Even though I’ve always dwelled in the ‘barely-believer’ camp, like so many others an arcane Jewishness has run through my family’s veins. From child to adult, I gorged on the rich pickings of a decisively pick and mix approach. Where a wholesome embrace of certain traditions over others appears arbitrary yet is utterly expected and rather effortless.

If this fluid yet full-of-foibles approach to religion is round holed, then autism is, of course, resolutely square-pegged – meaning Isaac’s Judaism has never really taken shape. Random festivals, sing-songs, all-join-in stories and surprises, full on Friday night dinners, the synagogue as social hub and more, ours is a brand of Judaism that’s more party than preachy. What it isn’t is logical, descriptive, sensible, straightforward.

As such, the cornerstone of the (secular, religious, whatever) Jewish calendar, Passover, passes us by. As the extended family sit down to celebrate, we’re seated elsewhere. It’s a giddy and glorious affair. Children the heart and soul. Colourful stories of Jewish emancipation are read by everybody, symbolic foods – bitter, sweet and worst – are eaten, dares are made. Wine is tasted, the youngest child sings, presents are hidden. 

We tried a fair few years ago, ever so slightly. But raised the white flag early on when the hurricane of noise and food and frolics blew Isaac into major over stimulation. The spartan surroundings of a spare room the only solace. Since when we’ve retreated into risk averse avoiders.

I’m denying him something precious I know. But Passover is so bound up with trip wires. Familiar family houses lose their familiarity; people jovially jostling for space and sound. Dinner tables become sinisterly ceremonial with plates and dishes, colour and spice, and much mystique. Groaning – literally for Isaac – with foreign foods that fizz and froth at him. Cutlery, crockery, glass, china – clinking, smells overriding, people shouting, picture books of cartoonish death and destruction howling at him. Not just a sensory sickness. The scalding blur of all this clutter, audibly and visibly also blighting any order, any uniformity he yearns. Comprehension can collapse like a house of cards.

Unreconstructed, this type of boisterous Jewish cultural onslaught is not on for Isaac. The collateral damage too much. For now. Denying can actually be a decent thing to do also. Even the most basic tenets of Judaism have seemed to favour isolation over congregation for us as a family. Synagogues are bustling, busy places with singing and chanting that can become exuberant and painfully loud to many ears, sensitive or not. The protocols are potty. There’s a haphazard nature of services that can mean a swift swing from loud informality to hushed seriousness.

Our one religious-ish experience five or so years ago, around diagnosis time, had been torrid. It was at an informal service in a synagogue for parents and their little ones. Jollily conducted by an expressive teacher, wide-eyed, miming motions that enriched and complemented tales of adventure and imagination. Restless, Isaac was disengaged. The tut tut brigade were on tenterhooks. Unaware as I was of his visual struggles to decode gesticulations (how my daughter instinctively, understandingly, unlike Isaac, apes hand movements and body moves with glee is so instructive). I attempted and failed to inspire him. Leaving in collective anguish meant no return.

Maybe the sorrow of this occasion has amplified in my mind. It happened during the epoch in our familial narrative of unknowledgeable nursery stuff, nasty stares and nerves fraying. There’s an element of self-infliction with all this avoidance, knowing how many, many Jewish communities boast an inclusivity – full of intention and with a degree of success. Welcoming is ubiquitous I know that. But instinct, sociability and illogical rituals are the dominant currencies in so many synagogue environments, making the battle for someone with autism appear demanding. My stance on Judaism therefore remains devoutly in stasis.

Nevertheless, I have a daughter to add to the complicated equation now. Who will nimbly fit into our faith’s idiosyncratic offerings that are full of warmth, love and family dynamics. Issues around identity that I could put off start to surface too – I have a responsibility to at least inform and open opportunities for both my children. And quite frankly, I am laden with a sadness about the absence of Judaism in my house; the silence haunting me a little like a lingering and lost Hebrew melody. So I am beyond grateful to two recent events that forced me out of this spiritual vacuum. And have proposed potential aplenty.

The first being the invitation to Ellie’s Bat Mitzvah (coming of age ceremony for girls). Ellie being a 12 year old first cousin Isaac adores with all his heart. And she loves him back just as much with a quite startling tenderness and understanding. Seizing on the solemnity of the day with brilliant simplicity, Isaac would announce with gusto for days and weeks before that “on Saturday November the 28th, Ellie will become a grown up”. Religion and sermons, ceremony and celebration, heritage, family, culture, discussion, children, a spirited and spiritual unique flavour – Bat Mitzvahs encapsulate that brand of Judaism I’ve talked about with its dynamism, dialogue and general richness. However, just this once, any amount of dwelling on the fissures that a visit could very possibly force failed to begin to chip away at Isaac’s absolute need to be there.

We arrived to witness men and women sitting  separately in the synagogue. An irrational concept to most people, let alone purveyors of logic like Isaac. He grasped this potential hurdle neatly however, leaping between my wife and me; utilising it as an opportunity to orientate himself in a new setting as opposed to processing any peculiarity. The mechanism of manically moving about a new location is one he often sets in motion on first visits. It is a method of focussing and stabilising – sometimes with success, sometimes not. My wife, admirably, courageously, unexpectedly, remained composed in the face of his energy. The physicality and enthusiasm was in the main treated with a compassion by most of the congregants.

Indeed, Isaac’s reactions and conversation, sparkling with honesty, spoke mischievously to some of them. “This singing is silly. It doesn’t work”.

His usual candidness induced humour: “Daddy, why are you kissing everybody, stop kissing the women.” “You don’t kiss grown-ups, you only kiss adult cousins and you mustn’t hug teachers,” checking himself before deciding who best to hug.

Regularly he enquired, “where’s Ellie, I need to see her, she’s becoming an adult.” A bit predictably and not a little pathetically, I was displaying a very detectable (by Isaac as well) anxiety. His mini mood shifts and irritations were manageable but always felt on the urge. A few rotten reprimanding voices in the congregation agitated me.

But there were a few moments to really cherish – which were when there was most jeopardy: when Ellie took to the stage to talk to everybody and share her learnings, and the subsequent address by the Rabbi. After some excited cries of “it’s Ellie”, he settled into a calm reverie as she spoke. Bewitched almost by her oratory.

And then the Rabbi spoke, and Isaac, with (as usual) not a trace of timidity, felt the urge to copy him a little as he spoke to the congregation. Isaac announced the Rabbi’s presence with aplomb and sincerity. The kind rabbi asked if he had “a sidekick somewhere”, an “echo perhaps”. To a now warmed up audience there was much merriment as Isaac repeated “echo” a few times and then hushed. Borrowing his school learning, he must have internally compared being at synagogue to being in an assembly, which, the two events now aligned in his head, made himself be quiet and disciplined. A real feat. We were proud and humbled.

Ellie concluded proceedings by announcing that to celebrate her Bat Mitzvah, she was making a donation to the charity, Ambitious about Autism, in honour of her cousin Isaac. “It was an easy decision,” she said, “as he’d taught me so much.” The hullabaloo at the end was a little hellish, what with people rushing around, snacks and wine, the crowd. Leaving via a playground and a neat finish as internally articulated by him, didn’t occur. The distress was transient, as we managed to manoeuvre out of the hectic synagogue, kind of in one piece give or take a lost skullcap or two. All in all it was quite a moment in ours and Isaac’s lives.

Which was built upon considerably a month or so later when my wife and I had the privilege of attending the Bar Mitzvah (coming of age ceremony for boys) of the wonderful Reuben – very similar yet very different to Isaac – who attends the same school. Electing not to take Isaac made sense to him; Reuben is a friend he sees at school, why would he see him not at school? He is a ‘School. Friend.’

A judgement-free, relaxed and open community, in a space dripping with inclusive spirituality, Reuben was honoured and seemed comfortable and comforted in his family’s unique synagogue. Reuben’s year’s preparation of chanting a significant Hebrew portion of the bible came to fruition fabulously. A beautiful voice resounding round the synagogue, a community delighted, heritage honoured, joy everywhere.

The Rabbi’s sermon sent me into emotional raptures. Veering between absorption and a little distraction, Reuben looked on whilst being celebrated completely: “We love you,” said the Rabbi. “You’re kind. Your personality so special. The room lights up when you enter.” “You’ve taught me what the scariest film in the world is!” At which point, unabashed Reuben climbed the pulpit and exchanged hugs with the Rabbi. Afterwards, a lambent Reuben told me, “I did my Bar Mitzvah. Everyone is very proud of me; I made no mistakes.”

This perhaps more than anything has created a path in my mind I can follow to drip a bit of Judaism in my family’s life. This could be Isaac. Yes, we have to show the devotion and immersion of Reuben’s family. Yes that me be unobtainable, unsuitable and a million miles off. Do I have the strength?

But with all the complications and randomness and individuality that comes with both, autism and Judaism can be joined. They can be bedfellows. And that is rather astonishing.

(I always try to respond)

Paul Davis ·

Wonderful and so moving. So proud xxxx
Apr 12, 2016 9:09am

Paul Davis ·

Superb, son. A most impressive analysis, and quite optimistic too – a stunning story. Dad xxx
Apr 12, 2016 9:35am

Matthew Davis

Bless you. V grateful for comments. X
Apr 14, 2016 10:23pm

Debbie Cantor ·

A very moving story. We take our ASD 13 yo son to synagogue most weeks. He now loves the routine of the service and manages really well, shaking hands with all his ‘friends’ the men who always sit in their regular seats. He hated the children’s services and we soon gave up on those – too much noise and unexpected behaviour. His Bar Mitzvah last year was special for us and the whole community.
Apr 12, 2016 11:26am

Matthew Davis

Thank you. That’s lovely and inspiring to hear. So glad he likes it and had a Bar Mitzvah too. Thanks for sharing..
Apr 12, 2016 10:18pm

Sam Matthews ·

Matt, you need to write a book (maybe you already have?). I haven’t come across a blogger who writes so beautifully.
Apr 13, 2016 9:22am

Matthew Davis

Hi Sam, thanks for that. Means a lot. Not written a book, no. Idea of one day writing about Isaac does appeal.
Apr 14, 2016 10:22pm

Ben Carlish ·

This truly was a beautiful and moving piece of writing, Matty, thank you! It had me crying all over my keyboard reading it at lunchtime at work to the bemusement of some of my colleagues! I think you so eloquently captured the rich joy to be had in peering through Judaism’s “complex cultural kaleidoscope” and conveyed the heartfelt sadness that you have felt in feeling being denied of passing that legacy on to Isaac. However, there is so much optimism too – making it a very Jewish piece of writing! My probably naive and ill-informed thought for what it’s worth, is that given Isaac’s accute awareness of his surrounding environment and given both of your strong Jewish identies, he will absorb much of that via psychological and spiritual osmosis – if that makes sense. While some of the ritualism of Judaism in a formal religious setting remains out of reach for now, you will continue to imbue him with the basic loving, embracing and compassionate values we hold so dear. For me Judaism is in the soul, not just in the mind and not just in subscription to the rituals…and this lad, I believe, has a profoundly Jewish soul.
Apr 14, 2016 6:20am

Matthew Davis

Love you brother (in law). Precious words, thank you x
Apr 29, 2016 5:07pm

Penny Madden ·

You write with such clarity, empathy and love, Matt. I have been reading some of your past posts and they are extraordinary. An amazing insight into Isaac’s world.
Apr 28, 2016 8:08am

Matthew Davis

Hi Penny
Thanks so much for your message. So nicely put – so appreciated.
Matt
Apr 29, 2016 5:06pm

Kiwi and Spoon

So very moving, thank you for sharing.
Apr 29, 2016 1:01pm

Sarah Driver ·

Beautiful and eloquent as ever Matty. Offering insight and understanding in to the world of raising children outside of society’s narrow norms and expectations. A wonderful boy with a wonderful and very lo Ioving family around him. X
Aug 23, 2016 3:58pm

Kindness is everywhere

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.

And that’s just the uncontrollable base climate we inhabit. Before we’ve even considered the bolts of prejudice, cuts and an antagonising system that regularly blow up in our faces. Or indeed the ill winds and choppy waters of Isaac’s future – education, employment, relationships.

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.

But doing that is such a disservice. This deference to Isaac’s controlled calendar of specificity; where he calls the shots of what to do, when and with whom from the comfort of his ever decreasing comfort zone of categorising, lists and scheduling. Instead we try ever so tentatively to tread beyond the timetable. As, indeed, does he. One step forward, two back, as I’ve often said. Challenge him with too much change and it all gets too quarrelsome. Pre-empt his shrill tones of rage and remorse with just a thimble full of new stuff and there can be progress some of the time.

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.

His slightly professorial persona makes loving people’s eyes stream. Our loquacious little boy disarmingly (unknowingly) charming others with his scripted announcements and super logic – on arrival at our house, people are greeted with “You’re alive! Welcome back. Are you staying for a long, medium or short time? Did you drive or walk?” (And on and on). Saying a hundred words of detail and minutiae when he can say one. Very literal, very long-winded.

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.”

In public, Isaac has also started to wear ear defenders to manage clatter and chatter. Just witnessing people’s smiles and warm recognition means for those moments a microclimate is robust and a great place to be. For everyone somehow.

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.

After answering Isaac’s barrage of questions – some very intrusive like, “Who were you on the phone to?” he replied “Neil, he paints walls. You’ll meet him soon.” Not being phased with “does Neil have a mummy and a daddy?” Not flinching at his repeating of questions, sensing how relaxed it made Isaac. Before long Isaac was helping him lay carpet protector down. “It’s like a sport’s obstacle course at my school,” a typically bizarre Isaac-ism inspired by a subtle visual connection no doubt, and Jim agreed wholeheartedly. In those few moments, the groundwork was completed that eased so much of the subsequent house work.

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.

And recently, where there’s been jeopardy there’s been a real kindness too. The London Transport museum in Isaac’s mechanical but full-of-meaning words is “a wonderful place, my favourite in the world, a short distance from Leicester Square, where I can get books and toys and watch trains and stay for a really, really long time”.

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.

Like all crashes, however, if people act quickly, the impact is softened. The staff we tweeted as his day’s solidity slipped from him with this unpredicted barrier of a closed door responded with alacrity. Just as his stricken self was bemoaning with real distress that “this place is rubbish”, a saintly individual opened the door and allowed him early, exclusive access. The aware and considerate staff made for a micro climate of autism appreciation where Isaac could freely frolic around in train bliss.

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. 

In fact he possesses an ever increasing, loyal and more than understanding band of buddies. Cousins mainly, who understand the need for one on one so will selflessly come round alone for a playdate with Isaac. Where he may squeeze parts of their bodies for sensory input and happy social expression; and to compensate his struggling body awareness. He may need more treats, dictate when he immerses himself in his iPad, watching something he’ll learn by parrot fashion and regurgitate in times of stress. These few cousins more than tolerate – they get and feel taught too. The lack of abstract chit chat is made up by admiration of his humour and personality. Even the impossible to manage despair and sadness he (very audibly) feels in his marrow at home time, when transition tests the inflexibility autism to the max, is met with no judgement or irritation

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.

And, no one finds him funnier than that big, at times immovable, fixture in his life, his sister, Tabitha. Someone who needs to be kind and caring forever; perhaps when he’s not being. Her resilience to his (actually in the main, benign) physicality defies her little-ness.

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.

Both types of play have merit – they simply must do in our universe. And I’m convinced Isaac picks up the pros of reciprocity in transient times. A light goes on, for a spilt second, as he witnesses the reward of sharing; and they both beam. He calculates cause and effect using her as some sort of giant abacus. He still demonstrates a propensity to repetitively play with inanimate objects. Most recently absorbing himself one dimensionally in a piece of pizza dough – he spoke and cared for it quite lovingly; it was moving; Tabitha seemed captivated too.  

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.  

Finally, and so fortunately, we have family who just rally round where necessary. When I was struck down by a 24 hour debilitating migraine, a loving grandfather picked up the pieces with immense thoughtfulness. Isaac’s schedule had been torn to shreds; me and my wife were no longer going away for the night; his grandparents would no longer be staying the night. He wailed at bed time that “my papa has to be here in the morning,” because that’s what had been planned, a nugget of fact he was grasping on to in a frenzy. Quite beautifully, papa (having not stayed the night, because I was bed ridden) returned in the early morning to stabilise his grandson. He went out of his way because he perceived that was the only way.

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.

Yet, for now, the 8 year old Isaac dwells in certain places and climates where kindness abounds. And for that, I’m incredibly grateful.
Leave a reply
(I always try to respond)

 

As always a beautiful piece. Thank you Matt.
Dec 2, 2015 8:05am

Thanks so much for reading and responding so nicely, Kate x
Dec 11, 2015 8:21pm

Mandie Adams McGuire ·

Amazing writing and description of Isaac’s world. He is one very very lucky boy to live with such beautiful caring people. Tears well with joy not sadness for he is safe and much loved. Somehow the future will be good for him. Xxxxx
Dec 2, 2015 8:37am

Matthew Davis

Hi Mandie, this is such a nice message to receive – thank you. Heartwarming x
Dec 11, 2015 8:27pm

Such a heartwarming piece and all so true.
Dec 2, 2015 9:41am

Matthew Davis

Thanks – Isaac loves his loving grandparents x
Dec 11, 2015 8:24pm

Jessica Lerche ·

I really really enjoy reading your posts. As the mother of a seventeen year old girl with ASD I struggle to enter her world and articulate it to myself and others. The way people around her are kind (or not): family, her friends, builders and shoe repair men (in our case) is profoundly instructive. Her difficulties are subtle and easily misinterpreted as not being so.

But the kindness endures – it grows even – along with her, and the years stacking up behind her now of being in this world and known and liked and loved.
I too fear how it will continue, especially as me and her dad grow older and the time comes when the social equation of care and support changes from parent -> child to one where other people matter more and more for her wellbeing.We shall see how it all pans out. I hope you keep writing –
Dec 2, 2015 10:28am

Matthew Davis

It’s great to hear such considered words from someone further along the autism journey. Knowing the ‘kindness endures’ is beautiful to hear. And can appreciate that ‘social equation’ hugely… thanks so much; getting responses like yours make me want to keep on writing, Matt
Dec 11, 2015 8:33pm

Alison Bowyer ·

“I block out the din of inner dread when contemplating him getting older.” This. The here and now is okay, but we all worry about the future. I just hope the kindness continues, when the cuteness starts to fade. Great blog.
Dec 2, 2015 12:04pm

Matthew Davis

Many thanks – what you say is so true. Matt x
Dec 11, 2015 8:25pm

Zoe Smith ·

Such a lovely article. It reminds me so much of my autistic Isaac and his younger sister Evelyn. I am thankful each and every day for the many benefits each gifts the other. Your precise exacting descriptions help me to see how our family experiences are coloured autistic and definitely rather gloriously different. Best wishes to you & your family.

Matthew Davis

Hi
It means so much when people can relate to our experiences. Makes writing the blog more than worthwhile. Thank you for reading and leaving such a resonant message. Matt x
Dec 11, 2015 8:29pm

Zoe Smith ·

Matthew Davis I admire anyone who can capture the nitty gritty essence of their experiences. Wishing your Isaac a joyful Christmas!
Dec 11, 2015 8:44pm

Peter Mishcon

Another wonderful, immersive description of those gifts Isaac shares with family, friends and (sometimes when they’re responsive) strangers. As others have often begged…please keep writing. It’s become the priceless armature upon which we see darling Isaac and his extraordinary parents growing chapter by incredible chapter. xxxx
Dec 6, 2015 6:36pm

Matthew Davis

Such a lovely and thoughtful message, Peter. Will keep writing I promise x
Dec 11, 2015 8:24pm

Peggy Maki ·

I am absolutely taken by the most wonderful account of a life with a son with autism. This is a kind loving person, family and this little boy is so lucky to have such a family coping very well. You have been given a challenge and as far as this shows you are stepping up to it in spades. You see your son is highly intelligent, kind, and trying so hard. Your glass is over half full, your son displays this kind love you show him.
Dec 9, 2015 5:00am

Matthew Davis

Hi Peggy
Thank you so much for your kind comments about the blog. In regards to GSH, it’s not something we would pursue with Isaac, but I appreciate you thinking of us.
Matt
Dec 11, 2015 8:20pm

Peggy Maki ·

I your posts Matt, I really need to communicate with you regarding your son. My email is makipeggy@hotmail.com, I am a retired RN and I have aided a lot of autistic children especially in Turkey. I cannot get ahold of you except thru this blog, I pray you will take the chance and email me. I would be honored to hear from you. Take care in the meantime.
Dec 9, 2015 5:34am

Peggy Maki ·

I replied to you yesterday after I read your blog. You might think who in the world are you? Why are you writing me, I have only one reply to that is because of what happened this Summer.

I am about information for GSH as I mentioned. I was contacted in July of this year from a Pediatric Immunologist and Allergist in Turkey, she has a 4 yr old autistic son. She has done an amazing amount of research on her own and then found me in this research she was doing. She decided to accept my information, science and aid in helping her son. Her name is Dr. Dr. ilke Topcu. She is also the head GAP doctor in Turkey heading about 40 doctors.

She decided to try as I suggested and her son has gone from nonverbal, non social, not really sleeping, slight seizure activity to a young son that is verbalizing, socializing with all his prekindergarden mates, he is sleeping very well and is also tolerating many more foods than he use to. He is on his way as his EEG this mth showed no signs of activity. His life is becoming so much easier and he is able to show his high intelligence.

This is because as he replenishes his GSH daily he is allowing his body to clear his toxic overload, his metals, pollutants etc. He has not been sick a day from the first mth he started to replenish. His Digestive system is becoming intact and so able to give his body the nutrients that should be absorbing.

I pray that you will take time to contact me, my email is makipeggy@hotmail.com I am having an excellent amount of successes in Turkey children as their parents are starting to see benefits as their children clear. Each body is unique no matter the size, the toxin overload is differant in each body and each body clears in its own time. I am about information, science, once you have that then you can make up your own mind as to if this is good for you or not. I do not bug anyone, I do not need to, this is so important, I care and am an excellent communicator, I get to know my clients and become friends as I so enjoy their roads to recovery. It makes my heart sing to hear their stories.

I know you are active in your blog, so this next step is yours to contact me. I will hope to hear from you soon, in the meantime do hope your days are good. take care.

Dec 10, 2015 5:57am

 

Adopting autistic traits

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.

We awake to thoughts of ‘what will we face today –anxiety, disobedience, delirium, depression?’ Equally we’ll be aware he may elicit his extraordinary bouts of compassion. Heavily physical with kisses, cuddles and unreconstructed, purely learnt and 100%-felt talk of ‘mummy you’re such a pretty princess; daddy you’re a lovely boy’. But they could be surpassed by a sadness just as swiftly. Cruelty can creep in too.

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.

Every morning on awaking, Isaac religiously stays in bed – still and silent – waiting for me to venture into his room (a behaviour so ingrained and important to him that he won’t entertain any alternative). So I always go in early, never lulled by what could be construed as contented quiet, anticipating his strange state of mind. Which then needs some diligent and delicate unpicking.

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)?”

Or something about me and my work; that “last Thursday when you left your office it was when I was having dinner not after I brushed my teeth…”

Maybe it’s his grandmother’s new journey to work. Something someone said at school. Events, dates, buses, trains.

All matters of fact. Delivered and endlessly repeated in a matter of fact way. But, paradoxically, defying a manic-ness in his head that needs dissembling. Because incubated within this solid, samey information is a fluid, frenzied pool of concern. The facts mere codes and triggers for what could be at first a whine, then a wail.

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.

The arrival of his boisterous sister in the room may see him swing into overly disruptive, tough to manage, ebullient behaviour (hysteria, silly toilet humour (I know this is typical for all children!) soon spills into being unmanageably hyper). Before a bout of train sound and station naming stimming (repetitive behaviour) to regulate his mental state and insulate himself from the world. The onset of stimming, this most autistic of trait, a welcome sedative for us all. Affording us a shelter from the slipstream of the condition’s rampant hurricanes. And therein lies a truth about the daily dread autism can unleash. You seek, and take solace in, autistic solutions. The fine line between it constructively dictating your life and destructively defining it starting to fade.

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.

Whatever, wherever, whenever, whoever, the first thing I will always do is second guess what Isaac’s autism has in store. Forever. But when the guessing overrides everything, when it becomes a survival tactic in torrid times, you retreat into a risk averse bubble of inaction and inertia for fear of the helter skelter.

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.

Then, a mini adventure to the beach, and the fun he’d been working so hard to have, turned sinister for him. Chucking pebbles crazily into the sea one minute. Throwing an almighty tantrum the next. All because a gallivanting dog brushed past him. His structured world invaded by random disorder. He screamed and screamed. We returned to the cottage, all attempts to appease failed. I strive to empathise sometimes. Feebly, I imagine his never abating sense of fear when something like this has tipped him is like I’d be if I knew a rat was in a room I was in. Permanently.

 

 

And from that point on we kind of lost him, and perhaps ourselves, to the trammelled existence that a blinkered adherence to autism can serve you. Windows shut for fear of flies. Gulls swooping outside sending shivers; even stopping the daily feeding, detected by my wife who sensed Isaac torn between routine and fear. When fear wins, you’re in a dark place. His eating pretty much ended. Stimming became the only respite, but even that would only satisfy him for so long.

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?

Home wasn’t the pure remedy. We spent a good few weeks at the mercy of autism anxiety. Behaving too under its spell. Clumsily, almost unconsciously. Its traits, or our literal interpretation of them, pervading our thoughts. Always second guessing. Always a little too on edge.

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.

I’ve tried to psychologically reframe some of my knowledge about him. Revisit the times he’s done the unexpected and brave. Like allow the dentist to pull and clean and scrape before boldly saying, “it’s a bit difficult having them cleaned. Can you clean them next time please.” Or managing the sensory discomfort of a swimming cap and noise of the pool and engage joyously in a swimming class (but my frustration then at the flat lining in lessons, his desire to repeat in the lesson and stim frustrating me. Unfairly.) Transient times where he courageously leaves his comfort zone.

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.

When I need to dig deep, because the desire to anything has disappeared, perhaps a way of positive thinking is to believe in autism’s difference. Isaac’s hard wiring means he deals in hard facts. They often belie inner stresses, as I mentioned at the beginning of this article. But sometimes they don’t.

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.

Because we can’t always unpick, always fret. Maybe there is simple joy for him in the concrete and whole. His mindboggling knowledge of the UK transport system defies belief so thorough and accurate is it. His inner eye visualises the coherence of lines and roads and tracks and numbers and sounds across the whole country. And feeling like a feat of memory he reports it all back. All the time. It can be a wonder.

 

But that doesn’t mean there’s a beauty and creativity and unpredictability to him too – and what he says that, maybe, just maybe, we can embrace and foster and ‘go with’. This was illustrated when my wife talked to him last week about where he came from. “My tummy” she said, as you would. “Why, did you eat me?” he asked back.

 
(I always try to respond)
Dear Matt, you write so beautifully! It was almost poetic to read – meaning it was so heartfelt and moving. Thank you for sharing and inspiring so many of us. Love to Isaac and your family 🙂
Jun 11, 2015 5:52pm

 

Matthew Davis

Thank youso much. Means such a lot hearing feedback like that.
Jun 14, 2015 2:25pm

 

Walkin’ on the Edge

Matt – I want to recommed a few websites that will give you additional support and insight. www.adiaryofamom.wordpress.com – is wonderful – mom of an autistic and a neurotypical daughter – supportive community and very insightful blog. Also, this site is a collection of blogs by autistic people of various ages on various subjects – their insight may help a lot in understanding how your son perceives the world – www.autistikids.com

Your son may be picking up on your fret, fear, confusion, which makes him more on edge – it’s a downward spiral. In the blogs I mention, you’ll find a lot of insight into how he’s processing the world from the AUTISTIC perspective, which may help a LOT to manage the stress all around. Your son may not be able to articulate how he perceives the world, but other autistic people are sharing their stories and they are there to help 🙂 I hope this helps you!

Jun 11, 2015 7:22pm

 

John Murray

Dear Matt,

Thank you for sharing so much about your family. As a grandparent of a lovely boy ( age 12 .. diagnoseed at age three) who has similar traits as Isaac I have some understanding of your joys and your frustrations. Our experince is that there is help, assistance and lots of good people out there who make positive impacts on our lives…. Three steps forward and two backwards is a common experience but we do now get a few forward without any backwards! Autism is an amazing subject and has told me more about the human condition than anything else i have touched.
Keep going… & very best wishes.
John
Jun 18, 2015 11:08pm

 

Matthew Davis

Hi John, that’s an inspiring message, thank you. So great to hear your positive experiences. Isaac’s grandparents are invoolved like you – they can play such an important role. Thank you and best wishes to you too.
Jun 24, 2015 1:22pm

 

Lindsey Barry

Hi Matt,
You write beautifully and I can relate to a lot of what you’re saying. Thanks 🙂
Aug 7, 2015 10:31am

 

Matthew Davis

Thank you – so glad when people can relate to my experiences
Aug 25, 2015 2:29pm

 

Pamela Buller

I only found your story today and you explain everything how my granddaughters world is through your sons because it was like you were talking about her to which we cannot get any help for, even though the school picked up her fine and gross motor skills were very poor.
They are not interested in helping to get her assessed or give help to her.
I know her fingers and hands hurt her when writing and she is behind the other children, and she still cant dress herself after PE in school and that upsets her because shes not quick enough.
The nightmare of her using her hands to eat her food despite being coaxed to use her cutlery, and the mess all over her clothes in school and home, after eating .to the awful depression and self esteem is rock bottom on certain days, the hateful words she says when shes quarrelling in which she has to have the last word,
.From birth she was an irritable baby who hardly slept she seemed to be in pain, but the drs said she was fine, she was always sick up until age 4 when we put her on semi skimmed milk and the sickness stopped
She goes nuts over any change in her life and you cannot pacify her and its pitiful, you can see the distress in her face.
She cant bare any loud noise and panics. she gaggs with some food smells. she cannot say her L’s ,
The frustration we feel because we dont know how to help her.
We avoid telling her anything in advance as she gets into such a state and will repeat over and over are we going yet, or worry about it, so we are learning to help in ways, but not in the depression/self esteem part and it upsets us to see her like it.
She knew all the bus numbers and their destinations of our local town at 3-4 yr old.
Can you please tell me how you got your help so we can hopefully try and have the help too.
Sep 21, 2015 1:33pm

Father’s Day 2015

With Father’s Day beckoning, now could be the time to indulge in fatherhood musings. How my son, Isaac, has affected any perceptions I may have had. How he enriches the experience. And challenges it. How his autism may have sent us off course for a bit. How my role as a father in my universe sits slightly out of kilter with others’ universes.

But that feels unnecessary and unimportant right now. What feels very right and very relevant this father’s day is to celebrate something, dare I say it, more fundamental to Isaac.

His mother.

His mother, who gave birth to him in barbaric conditions. And balanced recuperation with a stressed baby from day one.

His mother, who from that day to, well, perhaps forever, bats off judgemental glares and tuts from people who should know better but know nothing at all.

His mother, who had no place to hide from what felt like hell, when her husband could escape daily.

His mother whose instinct told her something was wrong but battled on because what else could you do? Who nodded unknowingly when other’s shared their similar stories; because in reality they were different.

His mother, who ferried around her sinking and struggling son to therapists and doctors. His mother, who never flinched in her unrequited love for her unresponsive son.

His mother, who kept calm when diagnosis was delivered. Seeing a future not finality.

His mother, who learnt and listened and devoured and dissected. So she was armed to the teeth with rights and knowledge.

His mother, who made the system fear her and not vice versa. Who got Isaac the right support, his statement of needs and who never ceases in improving his life.

His mother, who found him a school that was right. And another one when it all went wrong.

His mother, who campaigned not just on his behalf but on the many like him. Spreading awareness, sharing, inspiring, strengthening, surviving.

His mother, who sensibly delayed having a second child for the sake of her first. Before finding the inner strength to create a sibling for Isaac. Mixing nature with counter-intuition and most of all courage.

His mother, who tolerates swings in behaviour of an epic scale. Experiencing outpourings of love, bundles of anxiety and no little cruelty, day in, day out.

His mother, who knows how to push not punish. Comfort not compromise. Who can temper frustrations with empathy. Whose maternal instinct never wavers.

At best I play second fiddle to my wife’s orchestration of Isaac. Managing his days, taking him places, speaking to his school, arranging his time. She is mum, mentor, therapist and teacher. His absolute anchor. Which is why I see this Father’s day more than ever for what it is. An affirmation that what I do as a father is enabled and enhanced by the miracles managed by his Mother.

(I always try to respond)

Leaps in development, bound by autism

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

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

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

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

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

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

 

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

 

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

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

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

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

 

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

 

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

 

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

 

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

 

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

 

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

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

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

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

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

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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