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

My review of In A Different Key – The Story of Autism

I was delighted to be asked to review In A Different Key for the publisher, Pelican Books. Here’s what I wrote:

There’s a brief but reflective detour in this hugely ambitious, perhaps definitive, telling of the autism story, some hundred or so pages in. Steering from the text’s omnipresent objectivity and exhaustively researched facts, the authors make a personal observation that, I believe, has universal resonance. Whilst discussing a depressingly common occurrence, where parents were battling for inclusion and rights for their child (this time in the 1970s, but it could be any time before or after then), they muse:

“It almost never occurs to people raising kids of “normal” health and abilities to ask where all of the other children are.”

I’m not sure the authors totally meant it, but there’s a subtext here that distils the entire purpose of the book for me. Only when people question where the people with autism are can we live in a society that fully embraces the condition. And only a book like this can help to achieve that world; a book that doesn’t cease in tackling a history as complicated as it can be thanks to an ever changing diagnosis, heroes and villains, trends, science, supposed science, misplaced research, the list mounts.



At times it reads like a human rights tome with sensitivity stamped on every page. It becomes heartrendingly personal; an ode to the generations of pioneering parents who fought for people like me. I’d always had more than a hunch that a semblance of fortune was dispensed on my family that my son was born in the 21st century. Trawling through the at times barbaric environment (from Kanner’s refrigerator mothers to vaccine and mercury controversies) my hunch took hold and became a conviction.
The story is bookended with the account of Donald, the first person to be diagnosed in the 1930s and who’s still alive now. It means there’s an emphasis on humanity that offsets the often harsh truths of the book. Indeed a human filter covers most of the rigorously backed up prose. Turns of phrase – from the off – nicely fatten facts that could be starved of comprehension. For example, we are told that the very thing that rattles Donald most, is the ‘raucous rush of unpredictability’, something that chimes with my son, some 75 years and a world of discovery later. 
Taking a linear approach must have been the only option open to telling the authentic autism history. And the sense of a comprehension of this complex condition mutating and morphing over time is clear.


We discover the cruel and psychoanalytical interpretations of the 1950s and 60s that were so damaging and devastating for parents. Reading about Bruno Bettelheim, whose book The Empty Fortress likened children with autism to the prisoners’ gaze he’d seen in concentration camps, thus likening mothers to vessels of neglect, is particularly upsetting. It makes my awe at the fortitude shown by people like Ruth Sullivan whose determination to better the world (and succeed in doing so) even greater.

The book forensically dismantles these and later pernicious theories and falsified treatments that lacked any science. And we move deliberately and diligently to the modern world of autism advocates, adults as part of the debate and a true understanding of the condition as organically distinctive. The positive positioning as the book ends is in many ways thanks to the generations of parents and professionals who fought the battle.

The one troublesome theme is as a result of that linear approach. Yes, there’s a loose curve which strengthens the story. But by not being able to land on Lorna Wing’s inspired ‘triad of impairments’ and first articulation of ‘autistic spectrum disorder’ till two thirds of the way through, it’s difficult to grasp autism’s symptoms ‘infinite shades of intensity’. It’s a journey of discovery I guess, and the reader can make no conclusions till the end. Perhaps not a problem.
Revisiting Donald as he reaches his 80th birthday is the most poignant and beautiful end to this important book. Learning that he’s grown up in a town that seeks him out, celebrates him and honours him, is life affirming stuff. A microcosm of a perfect world where it does occur to people to ask where the other children and adults are.

(I always try to respond)

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

 

New label, more to learn

How Isaac’s autism plays out physically never used to weigh too heavily on me. Mainly because it was as a mental condition that I’d feel its full force.

With diagnosis and subsequent treatments clustering around social interaction, speech delay, obsession and routine that’s no surprise. It’s not that there haven’t been noticeable physical manifestations. There absolutely have – from simple coordination issues, to how he holds objects for everyday tasks, to sport and more. It’s just that the more domineering psychological and social effects have tended to force physicality onto the periphery. The toil demanded to study the workings of Isaac’s wildly complicated mind took precedence.

Sensory processing difficulties similarly perched on the sidelines; grouped in one amorphous, mysterious whole. The challenges have shouted much louder and clearer than explicitly physical ones. But there’s been little in the way of genuine understanding and treatment.

His senses, we’ve always known, are skew whiff, so navigating him through sights, smells and spaces has been tough. But the tactics have had to be a bit one-dimensional and blunt. Helping him a hundred percent in tasks, totally avoiding somewhere, blocking out, not attempting, escaping.

Our unreconstructed knowledge of Isaac means always front of mind is: obtaining order in a chaotic world, heightened senses, stimulation seeking, and discomfort distinguishing noise and sound, food phobias and maddeningly narrow diet. However, true tangibility has been difficult to track somehow.

Confirming this enforced enigmatic approach we have previously pursued for all of his physical and sensory needs was the woeful lack of occupational therapy from the genesis of interventions (diagnosis onwards).

But that changed when he entered his specialist school some 3-4 years later. The primary goal of occupational therapy is to enable people to participate in the activities of everyday life, so it encompasses the whole gamut of physical skills. Balance, touch, vision, coordination, strength. Programming in people with disabilities what is so instinctive in people without.

With occupational therapy elevated to one of his main sources of treatment, some discomforting truths have only recently started to emerge. Because such has been the inscrutability of Isaac’s physical and sensory symptoms, it’s taken a year of intense occupational therapy to really interrogate them. Yet the diligent, drawn out approach didn’t stop the shock and degree of sadness I felt from what the Occupational Therapist sensitively told us at the conclusion of his assessments.

Which is that Isaac has a diagnosis of dyspraxia. A developmental disorder of the brain (in childhood) that causes difficulty in activities requiring coordination and movement. Profoundly physical symptoms then.
Saying his autism, in my mind at least, has parlayed into a more complex mental and physical condition is purposefully dramatic. The physical and sensory struggles Isaac has have a tangibility now. I can’t help but feel the unlevel playing field he’s on anyway has got that bit more wonky.

But whilst my brain could short-circuit with the news, I’ve opted for a shortcut to pragmatism. Perhaps I’ve only been able to resist the urge to ruminate and rummage for meaning and emotions, because the school have set such an optimistic and labour intensive programme of interventions that are world class in calibre and authority.

Fortunately this new discovery of dyspraxia, this new label to process and live with, comes with a confidence that it’s awash with the sea of knowledge we need to get by and get on. It all slots in to his autism too.

The facts are fierce though, focussing as they do around sensory over-responsiveness, weak balance, lack of body awareness, visual and auditory struggles.

During the last school year, it became clear that structured motor movements in PE such as balancing, running from cone to cone, passing and catching a ball, throwing with one hand were arduous for him. Progress has been made but problems like these together with fine motor skills difficulties will perhaps always be part of him. Part of his autism. Handwriting, holding implements, a cup, a plate. Running, sport, any type of physical interaction with the world around him. Leaps of improvement happen, but it’s not always linear. A fluid approach is best.

Highlighting all these physical and sensory problems is instructive. However, viewing them in isolation is a misleading and miserable process. What has actually happened with the detailed, expert reporting of dyspraxia is a crystallisation of my confusion with sensory processing difficulties and nagging physical concerns into a more complete, coherent understanding of his autism. Into an interlinked mental, physical and sensory condition.

Because at the heart of what’s been discovered is that Isaac’s difficulties are due to sensory processing and integration difficulties which are impacting on his ability to conceive, plan and actually execute movements. A direct link between sensory processing and physicality in other words. With myriad psychological and social implications – that we’ve always known, but now have added context.

A microcosm of this is the poor body awareness he has of himself and others. It means he requires much tactile input to feel sensory information and process it. He seeks to hug people and squeeze them as a way of understanding his body in relation to someone else’s. He can’t just be naturally spatially aware. It’s like he needs to lay physical markers.

He’s also learnt that hugging has a social element, but its intricacies are still maybe alien. So his desire to touch and squeeze is to align his physical sense of gravity. But the social reward he’s had from parents and grandparents cannot be transferred to teachers, which he has had trouble learning. One step forward, one back. How complicated, how cruel.

My thoughtless ‘don’t squeeze’ dismissals, and blanket talk to of not being overly physical shame me. He can’t just switch of this innate, life surviving mechanism he has. Intense therapy, squeezing implements, exercises, all one on one, over months and years are needed. As are social stories and aids to help read emotions.

Visual perception and visual motor skills are equally major challenges for him. Copying simple physical actions (in PE for example) – something so instinctive to typical people – is fraught for him.

The impacts on everyday tasks are huge. Picking up cutlery on a laid, full table and eating a meal is terrifically tortuous for him such are the fine spatial and visual skills needed. He sees everything, all seemingly separate unconnected objects; this photographic memory – it’s a handicap as well as something incredible.

Then there’s the implications for food we need to digest. Why he needs it uniform and ideally beige for visual soothing. Touch, taste and smell of course. That’s without venturing into battles we have always known about; the phobias, anxiety, routine and more.Finding one item in a bag when he can’t see all the items laid out in front of him is next to impossible. I can’t assuage the guilt I feel when pondering the times I’ve casually and impatiently asked him to pick something up, told him to ‘look, it’s straight in front of you’.

The school year ahead will have a heavy focus on the physical and sensory. It will be exercising my mind like never before, knowing we need to adapt a lot to support him properly. Sensory integration and action skills that are so critical to life and come so laboriously unnaturally to him. Life skills – dressing, eating, basic participation in activities. These will be painstakingly practiced by him. There will be frustration and anger. Impatience will trump patience most of the time.

Isaac’s sensory and physical realities – their toughness, their realities – have knocked me a little. Life was far from easy for Isaac. Now the burden has got that bit bigger.

Leave a reply
(I always try to respond)

 

James Carson ·

Hi,
Your blog is fantastic and your honesty is so refreshing and I imagine this blog is helping so many people who are feeling the same worries that you feel. I just wanted to share with you a very edited story of my brother’s life, he has just celebrated his 53rd birthday which he very nearly didn’t make, as he suffered major heart failure last year which needed an 8 hour operation. Going into the operation weighing less than 6 stone we were gently warned the odds were extremely low that he would survive. My brother was born weighing 1lb 8 oz which 50 years ago was a challenge for the doctors to keep him alive. What has this got to do with your blog well if I think of some of the predictions and comments made by doctors and specialists over the years as to some of the challenges which he may have to face it would have been easy to become overwhelmed and given up. What growing up with my brother has taught me is that anything is possible, don t just accept one view there is always an alternative view. He has a resilience that is unbelievable and he has certainly challenged predictions not just for his own health but with his lifes achievements. He has worked for 28 years for a supermarket, certainly not predicted, he has married and lives independantly with his now wife whom he met at the special college he went to when he was 17 and he has travelled to over 15 different holiday destinations ranging from New York to Greece. None of this was ever imagined possible all those years ago, in fact he is more well travelled than myself!
He does not have Autism but has learning difficulties and physical difficulties, however his resilience and attitude to life is amazing. He has certainly challenged the so called experts opinions! So did we his family. I m sure you will find that Isaac will also lead you down this path too
Sep 22, 2015 11:15pm

Matthew Davis

Wow, what an inspring post to read. Thank you so much. Hearing about adults who were diagnosed as children and have gon on the lead rewarding lives, excelling themselves and proving doubters wrong is very valuable to me. The love and respect you show your brother is amazing. Equally buoyed by your work with children with autism. Isaac has some incredible teachers, truly incredible. They know when and how to push him.
Thank you for making my outlook today unusually positive.
Matt
Sep 25, 2015 10:37am

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)

Always feeling autism’s presence

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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Discovering problems, creating potential

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

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

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

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

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

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

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

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

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

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

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

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

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

 

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

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

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

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

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

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

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

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

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

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

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

(I always try to respond)

The weight of the world on tiny shoulders

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

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

“Mummy, who’s looking after Tabitha after her sleep number one?”

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

“Can we go to Costa Coffee on Finchley Road before the clock clicks to PM?”
“Daddy, where are your friends? Are they at home or going to work?”

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

There’s no let up. No respite from a need to balance his ever computing mind, the oxygen of literal information his survival. Survival, not satisfaction. Or contentment really. Answers provide transient reassurance, ephemeral composure, as opposed to any overt happiness on his part. These cares of his, these things he really, really, really worries about with their terrifying capacity to dominate him and therefore us.

There’s an overriding need to control everything that means the routine obsession has mutated into other forms of repetition, detail and description. He mines me for minutiae, mainly things I’ve told him time and time again. (Offering up new information, even in the factual, dry way he desires so desperately is hit and miss. The discoveries of detail need to be initiated by him in the main). People’s addresses, their whereabouts, train stations, street names, bus routes, places we’ve been. Things people have said, announcements train drivers have made, announcements train drivers should have said but didn’t. And dates. Of all events. All unerringly accurate. And all of this, this avalanche, delivered at pace from the moment he awakes, identically, forcefully.

“Daddy when you go to your office near Oxford Street, will you touch Oyster at Dollis hill and Piccadilly? Why?”

“Why has Tabitha got no clothes on?”

“On the Jubilee line, why does the man say stand clear of the doors? Why ,Why?”

“Can I tell you something…The light bulb on the street post in Chestnut Road doesn’t work? When will it work? Now or very soon?”

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

Despite all this, I can’t make as bold a statement as Isaac is not a happy child. He implores happiness in us after any distress. Or even randomly. He will flood with delight at unexpected moments, demanding ‘cuddles’. But authentic joy has a manic, frenzied edge; a kind of chemically induced hysteria if we comply consistently with his commands. And within seconds, he could be grasping his ears, full of tears, punching or pushing, screaming.

(The closest he comes to a relaxed joy, when the tempo of his thinking slackens and settles a little, is, as I’ve said before, when journeying anywhere on the London Underground. He exhaustedly reads all signs, memorises announcements and is energised by intersections. The whole tube map seems to appear in his mind’s eye, each station, line and colour, a kaleidoscope he lives and breathes.)

It’s as if he has a different setting or temperature to us. Swinging in seconds from radiating elation to reaching boiling point. Acclimatising to his meandering mental state can be unachievable.

During the long, drawn out, empty summer break (his baby sister a permanent, chaotic presence too) this perpetual state of botheredness my son has been in has persecuted the whole family. Knowing his despair and demands – but having blunt tools at best to deal with them is a numbing, powerless state of mind to be habiting. Bogging my mind down with Isaac’s fragile and frazzled mindset has been like brutal combat.

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

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

Here, perhaps happiness for Isaac can be attained. A place made up of people who will discover him – and him, himself – in a way no one has before. Because a condition as perplexing and otherworldly as autism needs professionals and carers to lay the groundwork for others to tread carefully.

I hear of a holistic approach, where he is solely in the hands of experts. A joined up support where he’ll benefit from occupational and speech therapy, yoga, sensory integration and more. Where there’s a necessary and welcome very low ratio between pupil and teacher. Plus a pastoral care that sits above everything. Knowledge of autism unparalleled. The condition respected so the child can be pushed appropriately. A balance that only the most skilled and informed professionals can perhaps keep.

There’s psychotherapy too – a potentially unsettling idea for a parent. However, when aligned with strategies emanating from the school, the thought becomes bracing.

Some preliminary sessions with the psychotherapist have told us what we expected. That the battle between autistic and non-autistic traits is being lost. Obeying his orders means living in a regime that’s doing none of us favours. That the relentless repetition leads to mindlessness. That we are accommodating not addressing this mindlessness. That, above all, he’s anxious, worried, on edge primarily because the world and its vagaries simply doesn’t work for him.

And making the world work for him will be painstaking and harsh and challenging. Just assessing the sensory processing hell he clearly experiences (beyond the straightforward autistic ones of routine, order, self-stimulation) makes me realise the urgent intervention needed. Streaking through his body and mind are sensitivities that need dealing with. Wanting to be squeezed, demanding pressure. Aversion to so much clothing and all labels. Needing to smell people. His many food phobias. Freaked by dirt. Terrorised by the irrational movements of animals. Pigeons in particular and therefore anywhere associated with them. His clumsy and poor motor skills and lack of body awareness work against him in ways I can only imagine. The torment he gets from certain noise and smells. All unpredictable, all potentially everywhere.

Now, at last, I know a team is in place. One week in, I sense an ever so subtle aura of delight is emerging from him. Replacing the mainstream school scrabbling about, are the people who will know what’s best and truly deliver for him. Now he’s somewhere that possesses the tools to make my boy happy. Which is the least he deserves.

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