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

 

Kindness is everywhere

The very things that many people think make the world go round, actually make the world go wrong for anyone associated with autism. Hustle and bustle, chin-wagging, dropping everything to do nothing, spontaneity, chilling, trusting instinct, nous, crackling atmospheres, surprises, adventure. Society is bred and nurtured on wholesome truths like variety is the spice of life. When for so many touched by autism, variety is the spectre of life. A world where the primers of improvisation and intuition make it a world wrought with bafflement and, quite, frankly, danger. Off script, on high alert – us and Isaac.

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

Battening down the hatches has its appeal, believe me. Burying our heads in quicksand, getting lost to a limited life of fierce logic, linear living and uniformity. Scripts, structure, rigidity, predictability. Repetition, repetition, over and over.

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

And revealed to me in these positive and proactive moments – when brightness seeps in and there’s buoyancy and a bouncy spring in all our steps – is that Isaac’s existence can be one to really revel in. That despite how ill-fitting the world can be for his autism and dyspraxia (from sensory overload to the ubiquity of physical and visual disorder) right now, permeating this 8 year old boy’s climate is an extraordinary kindness. We are discovering microclimates of care and love orchestrated by friends, family, even strangers. At this very particular moment in time.

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

Out and about, his turn of phrase, turns heads. Bringing joy more often than not. Who can’t fail to warm to a young boy earnestly commenting that he is “so happy when I’m on a bus; having such a lovely time. Can we watch a little bit of buses and trains please daddy when we leave this bus for the street near the station at Highgate? Highgate has a capital H. Capital letters are for restaurants, people, names and places.”

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

Thoughtfulness can be found in the least expected places. Some recent repair work to our house meant a cavalcade of builders disbanding in his space – and disrupting. The noise and mess could easily have accelerated in Isaac’s troubled mind to a torpedoed home landscape. Step in builder Jim and his innate appreciation of autism, and perception of Isaac.

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

Fanciful maybe, but it even felt he allowed for Isaac’s visual perception and motor skills challenges, showing him where work would happen, bricks moved, tools left, mess cleared. Unifying for him this tapestry of disturbance to his world into a digestible, comprehendible whole.

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

But what if he arrives there and it’s not yet open? A kink to the flow of the punctiliously prepared day exposed already. Like a cumbersome computer ever expanding its ram capacity, Isaac’s ability to store information increases by the day; the flip side being a crash when the storage malfunctions will be ever more dramatic.

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

Talking of trains (which Isaac rarely doesn’t do) Isaac’s monologues of multiple station names and their adjacent roads are – at the times when he’s open to communicating this extraordinarily processed and recalled information – received with relish by friends. In awe of his photographic memory and encyclopaedic knowledge, blessed by his idiosyncrasies, these fleeting episodes affirm the value of his ‘difference’ and how it can instil optimism in all. 

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

When things are good, it’s an extended family micro climate where his exuberance, eccentricity and infectious hysterics, just makes them smile and laugh. It’s so gloriously spirited.

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

They clash, of course. My wife mediating magically. But there is a kind of beautiful complementary nature to their interactions. Her typically evolving play is imaginative, implying the fine spatial and visual skills that he is so bravely battling with. Compering her mini tea parties can become quite chaotic – she creates, he crash, bang wallops. But Tabitha loves his rebellion somehow.

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

As she was, as if seated breathlessly in an atmospheric auditorium, by his extraordinary delivery, word perfect and completely from memory, of the entire Gruffalo story; most amazingly, in the exact tone and tenor of the film they’d both been rapt by. This sublime skill of his – entertaining and enthralling Tabitha (and us) in equal measure.  

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

All these events and relationships emphasize just how safe and comforting the many man made microclimates of kindness, openness and awareness are, when we are lucky enough to find ourselves in them. Sometimes in public, usually not. Where awareness has been impressed upon people with vigour.

Who knows the longevity of this not impossible to locate kindness? I feel tears when recollecting the tantrums that people interpreted abjectly in the early years, when kindness was at best evasive. I block out the din of inner dread when contemplating him getting older. Where the world is one of dipping in and out of things; with intuitive filters and edits life-saving tools for folk – anathemas to how Isaac sees the world, pursuing excessively, fixating, immersing, obsessing. When his quirks may be not as refreshingly received. A crushingly conformist world at odds with those deemed odd.

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

 

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

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

Mandie Adams McGuire ·

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

Matthew Davis

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

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

Matthew Davis

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

Jessica Lerche ·

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

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

Matthew Davis

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

Alison Bowyer ·

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

Matthew Davis

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

Zoe Smith ·

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

Matthew Davis

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

Zoe Smith ·

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

Peter Mishcon

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

Matthew Davis

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

Peggy Maki ·

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

Matthew Davis

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

Peggy Maki ·

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

Peggy Maki ·

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

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

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

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

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

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

Dec 10, 2015 5:57am

 

Adopting autistic traits

Is it too severe to say autism serves up a degree of daily dread on parents? Perhaps not. There’s certainly a never ending sense of uncertainty.

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

He can sway between extremes alarmingly swiftly; middle ground is rarely inhabited by Isaac. Hence our every day, every waking hour default is ‘on edge’. Always prepared for some heavy lifting.

Our nervousness will vary vastly in terms of intensity. Weekends and holidays, where a lack of routine can take Isaac hostage in horrible ways, could mean it’s heightened. A precisely prepared school day with plans aplenty and a sense of cautious calm could even kickstart the day – although my stoic wife may have to suppress post school potential fallout.

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

Very likely compounding the need to confirm the day’s itinerary, something will be mentally fidgeting him which he will attempt to articulate through his repetition or recollection of facts:

Like a train journey he recently did that stopped at an unannounced station: “daddy, why did the train stop at Basingtoke on the way to St. Ives on the national rail services? Why didn’t the driver say so? Because he did say the train stops at Reading and… (lists them all)?”

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

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

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

My wife possesses a particular patience with connected tenacity to confidently locate his real worry about the day ahead: maybe he knows nothing’s on in the afternoon and that’s scary, perhaps he’s going somewhere there may be a dog (he hates and is scared and repelled by them and their, I imagine, erraticism: “dogs are rubbish…,” he’ll say, “they have to go away…stupid dogs”). Or is it a day when I might be home late from work (because I was on the same day last week). Whatever he’s recalling – however long ago – will mean he’s experiencing the same stress levels as if it’s happening there and then, in the moment. His mind can appear a minefield where treading carefully guarantees little in the way of protection from unexpected explosions.

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

Because at vulnerable times the inventory of knowledge and experience I’ve harnessed about Isaac emits mental tremors in me before I attempt to do pretty much anything. I can catastrophize to the point of crippling anxiety. Indeed I’m certainly not the first person to comment that parents behave in autistic ways so absorbed are they in their child’s autism and its attributes. And so keen are they for an antidote to the chaotic autism-unfriendly, spontaneous society we live in. It’s common sense damage limitation. But it can also be damaging. I know that.

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

A recent holiday triggered that survival tactic which then overstayed its welcome so suffocating was its nature. The first half of the holiday was as care free and conventional a holiday I believe we’ve had. With extended family nearby, we stayed in a cottage on a cute little farm; it was symmetrical, organised with well-behaved animals. Which family members visited us and when could be plotted and itemised by him. Every day the chickens and sheep and ducks, safe behind fences, could be fed with Farmer Tim at the same time. His previous blanket wariness of the animals became an accepted awareness. No feeding of course, and a demand that the animals ‘stay away please’ but it was an (somewhat edited) idyllic few days.

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

 

 

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

Making Isaac authentically happy (as opposed the faux happiness of transport talk or being boisterous) is hard to come by. When I offered an early return from the holiday he visibly loosened like a tight knot magically undoing itself. He played nicely with his sister, ate a sandwich and even went outside. But was that happiness or so-big-it’s-impossible-to-quantify relief?

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

A process of marginal losses happens. Isaac’s limited eating, limits further. His propensity to do anything lessens. We all follow a strict routine. Meltdowns aplenty. Ipads are a relief. Life contracts to very little when all these compromises are made.

And liberating us from this not so long ago were the objective Custodians of Isaac’s potential and welfare and hope. His therapists and teachers at his sanctuary, his school. Who eased us in from the autism waste ground we were scrabbling about in. They spoke of his timetables, how he’s loving laughing and socialising at school. Their pride in him. His hilarity, imagination. Mostly though, they implored us to own our lives. Leave him with grandparents. Indulge but know when not to. We innately know what he can and can’t do, when to or to not push him.

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

Importantly, the next time I’m caught in an autism rut, where I lose myself to its supposed traits, I’ll try to tell myself it’s too complex a condition for such, well, crass simplification.

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

We really can lighten his mood with a slightly more muscular approach. I barter with him – eat, play, see certain folk; and you can then tell me whatever fascinating encyclopaedic bit of travel trivia you absolutely have to tell me (like that there are three Streathams on the national rail services which he’ll list, before naming linking bus numbers and more.) We can dampen that daily dread – it’s possible on occasions.

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

 

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

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

 

Matthew Davis

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

 

Walkin’ on the Edge

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

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

Jun 11, 2015 7:22pm

 

John Murray

Dear Matt,

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

 

Matthew Davis

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

 

Lindsey Barry

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

 

Matthew Davis

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

 

Pamela Buller

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

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)

Family dynamics

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

Crawling with intent, reaching and grabbing, interrogating for a micro second, disrupting, waving, waving back, indiscriminately squishing fresh vegetable, fruits, pasta bakes – you name it – and making great ceremony by sticking them firmly and forcibly in her mouth, and the surrounding areas of cheeks, eyes and hair. Wanting to use a spoon for goodness sake. And, diametrically opposed to a sizeable smattering of responsible and committed dads, a mini-behaviour that comforts me considerably: the pointing of the remote to commence an episode of Peppa Pig. Cause and effect – tick.
Tabitha’s interactions, instinctive learning and determination for independence, contrast harshly with Isaac at one. Viewing this behaviour is as soothing as witnessing Isaac’s atypical behaviour was agitating. So when we paused to briefly take stock and analyse Tabitha at one, we allowed ourselves to take some much deserved pleasure in our little girl’s developments. A brief pit stop in sentimentality-soaked mummy and daddy land if you like.

Hesitancy holds us back most of the time though. If only because I’m not quite sure what emotion to access when pondering her typicality. Joy? Relief? Guilt at being joyful or relieved? Sad for Isaac? Happy for her?

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

Our experiences with wider family have been instructive here. Ours is a big, boisterous, effortlessly loving brood. Idealistic and inclusive, with kids of similar ages sparring, socialising, discovering. For typical young families who thrive in a spontaneous, soulful and healthy environment, one couldn’t wish for anything more.

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

 

So I’ve come to terms with being absentees at get togethers. Why would we put Isaac through it? Him desperately trying to block out the sensory hell of noise and conversation he can’t decipher. And despite his cousins knowing the reasons behind his removal and supposed special treatment, there must be thoughts that this is some sort of mutinous behaviour by him.  How can they not ogle at his oddness – of, for example, his current coping mechanism doing ‘train’, where he relives, exactly and exuberantly, a plethora of train journeys loudly to himself; sounds, announcements, the lot; the accuracy, as ever, extraordinary. Normal, urgent behaviour to extrapolate himself from the surrounding madness. Where he sees madness, others see normality. And vice versa. A chasm.

But over recent weeks and months our immediate family has become a microcosm of the wider one. With all the hullabaloo of free flowing family life that our slightly solitary existence had managed to avoid, having entered our four walls. At a time when many areas of Isaac’s life are similarly anxiety inducing, calling for a flexibility he cannot fathom.

His shear physical force around Tabitha is one manifestation. Hugging, hysterics, squeezing of her. He’ll show perfect ‘baby’ behaviour, no allowances made for his bigger age and height, aping quite brilliantly her movements and gestures, so collapse is tantalisingly close. Perhaps like twins? Double trouble, an ebullient double act. Our fear for her littleness is massive of course. There’s risk everywhere. And yet, we can count on one hand the number of times he’s made her cry. Her resilience to his repetitive teasing, snatching of toys and overzealous tickling is uncanny. Maybe she knows malice is non-existent. But he’s a force around her that needs containing. And what’s around the corner?

Belongings are in peril always. Hers of course. He’s adopted an obsession with peppa pig, books, DVDs, magazines – hoarding, cataloguing. As always with the capricious nature of autism, he’ll sink into silence and the security of his phone, tube maps, leaflets, and an almost eerie calm at any moment – which fails to never put me on edge a little.

I don’t doubt a strand of jealousy. And I appreciate the keenness by so many to stress that Isaac must be showing jealousy; how normal it is and, indeed, isn’t it rather reassuring it must be the reason for his wayward, difficult to control behaviour. Well, yes. But it is a whole lot more complex than that.

As is so often, explanation, survival strategies and lateral solutions have emanated from the people of BOAT (Brent Outreach Autism Team) who doubted the jealousy argument choosing instead to discuss the arrival of a knockabout, crawling, messy, clumsy, unpredictable, presence, that test all parents and siblings alike – but who have the tools to manage. He doesn’t.

And then there is all the other parts of his life contributing to the melee. Tabitha is one cog of a complicated wheel that risks running him over if we don’t navigate it competently and coherently.

As such, BOAT looked for problems elsewhere. Like his experiences at daily school lunch; a break from the nicely regimented school day. An echoey, cluttered bundle. When his teaching assistant is stretched. Kids run amok. He stims, flaps and seeks solace. But it’s a façade that crumbles on his return home, my wife left to pick up the pieces.

It is clear his shifts in defiant, dictating behaviour, ferocity of frustration, anger and not knowing his own strength, come from a simple place that Tabitha can trigger, or school lunch, or family outings, or unexpected visitors, or pretty much anything when the day’s minute-by-minute planning has not been executed meticulously. Which is chaos, disorder, noise – any deviation from the absolute known. Any coping he has done in public is camouflaging internal insecurities and agonies brought on by sensory-processing difficulties, his non-grasping of social language, or, mainly, a lack of order. A need for pure reason and logic perhaps – his lifeblood in scant supply.

And after any event – at which the stress for him could have been imperceptible for anyone else – when he sets about recharging his battered batteries, carnage can ensue. A state of autism-induced frenzy. Rage, sadness, insecurity. His autistic traits reaching a fever pitch that we cannot douse. Rituals are rife. His routine having taken such a bashing, he’ll fixate on a memory, something specific, so desperate he is to control his environment. 

Perhaps on the journey home from a supposed innocuous park visit. Roads are a latest obsession. He is showing a black taxi like knowledge of journeys. Each, though, once completed needs to be completedidentically. Road works, a shortcut, diversions – can be critical. Scripted responses firmly and dogmatically directed by him are demanded.

 “We’ll travel on Minster Road – looks like Westminster on the jubilee like train. What does it look like daddy? Say Westminster. Then after Minster Road, Cricklewood Broadway. What line is it, is it the Over ground. Say yes, of course…”

Monologues delivered in a heightened state, where if you don’t play your part or follow the instructions he may scream, become agitated, freak out and become impossible to do anything with other than restrain and hug. If I get the specific reason a bus is not in service (“because the driver has gone home for his tea, daddy – say it”) wrong, then there’s thunder.

(He can rattle off 10, 20, 30 road names in perfect sequence to describe a journey. Together with the name of the borough that, I hadn’t even noticed, appears on all road signs. Likewise he knows from memory the entire tube map, which line each station is on. Yet, when asked he may not answer if he doesn’t feel like it. Even, or especially, to parents wanting to show off his skills. The sense of reward that we may feel imparting knowledge, a foreign concept to him).

Rituals proliferate just to relax him; having the opposite effect on us. Cooking with my wife thrice daily at least, making mini trilogies of videos of preparing specific items at specific times. Then watching them back repeatedly, memorizing and collating. Needing textures of all the foods to be the same, consistencies for stirring identical. Then there’s the journeys to the same shopping centre, set of escalators, coffee shop visited, stuff ordered, books bought, conversations had. All tightly, forcibly adhered to; an iron grip on us. Repeated behaviours that become magnified to epic, end-of-tether for us, end-of-the-world for him, proportions.

One small step that’s yielding, for now, some small gains in coping mechanisms is him doing half days at school as suggested by BOAT. The effect on my wife in terms of childcare is clearly arduous as is the exhaustion she experiences tending to his ever need, focusing on him solely – help from our part-time nanny taking Tabitha but rarely both kids such are his demands. The good news is he’s fortified confidence wise. Less likely to be knocked sideways by his inability make it through the day unscathed and not too discombobulated from proceedings. The acuteness of his autism doesn’t abate though. And of course Tabitha is around anyway.

Weeks on and he’s still confirming “Not lunch today at school?” And only recently did he tell us that at lunchtime there are “too many children in the playground. I didn’t like the noise.”

Many days, my wife has to simply claw her way through catastrophe to get to even keel.

Real life like can be real agony for him, and us, with its irregularity, impossible-to-tune-out noise and lack of structure. It’s that stark, simple and unfair. A hatred of the haphazard. “Give me some space please!!” he can plead. He has an inbred inflexibility that so, so limits what he can do.

And the upshot? A segregated, slightly sad family life. Where my wife and I split duties of a weekend and during holidays. Like ships, with one child on board, passing in the night. That way, Isaac has a 100% focus, him calling the shots. Rituals and repetition running the show, but with slightly less intensity. A tiny bit easier to manage.

It’s where we’re stuck, albeit consciously. Our family we cherish, living a limited to stop it becoming an impossible chore. Now, as we tread water between him attending the new school where we’re confident he’ll have the intervention needed. Where we anticipate a new dimension to his life – where less distractions mean his feats of memories, his humour, his extraordinary capacity to learn, communicate and more are coaxed and cajoled, not compromised.

We cower for insularity for self-preservation’s sake not selfishness. I personally get tangled taming the sorrow of solitude with the desire to grasp the nettle of sociability – knowing the stings can be more than skin deep.

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

 

What’s normal?

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

Often, on close inspection, when there is a mysterious onset of distress, discomfort, defiance or aggressive avoidance that can so baffle us, so weary us, it can actually be attributed to autism. Albeit in its most extreme and fascinating form. Like when he witnesses a barely noticeable change to a thing or things that we haven’t accounted for or think we can dodge.

For example, he has close to a hundred small video clips he’s made on an iphone of his train trips. Handing him the phone, his after school treat he’d spent the day fantasizing about, I realised I may have deleted or discarded one. But it was too late to reason with him as he swiped and mentally scanned the swoosh of barely distinguishable mini-still images of clips in one fell swoop of his skinny finger. Noticing in a split second one wasn’t there. Cue tears, frustration and collapse. Kicking with rage. A demonstration, not particularly appreciated by us at the time, of his extraordinary visual, photographic memory – particular to autism of course. An eye for this type of detail is practically incomprehensible to me.

Talking of his visual capabilities, any tampering with his visual mind map (which connects him to the world) places his world out of kilter – eliciting rash behaviour that can appear mysterious without a forensic done on its causes. (He sees the world the way an unfocused camera does, taking it all in, painting a picture in his mind, so everyone and everything he sees for a second time or more is in context; it’s one of the reasons he yearns repetition and feels safe and sound with it).

So when a rushing tube train was missing a tiny yellow sticker warning of objects being trapped in between doors – something I had been blissfully unaware in all my decades travelling the tube – on a stationery train let alone a moving one – he was uncontrollable with sadness and insecurity. Now, he’s learnt to put a positive spin on anomalies like this, becoming uncontrollable with glee and giggles, when he sees it ‘Look, daddy! No sticker! Train’s got no sticker!!’ Progress.

Equally, he can appear summoned by strange – invisible to me – similarities, like the time he became agitated at dinner because there was ‘a monster, with big starey eyes’. Things settled when we realised two innocent bagels and a bread knife sitting in close proximity to one another, were the culprits.

The triggers therefore for what can appear mysterious behaviour can be located in a semblance of logic. But only with exhaustive analysis. And often, when he throws himself into a prolonged bout of stimming (self-stimulating behaviour) of train sounds, flapping hands, seeking reflections and sensory fulfilment, one can but be mesmerised by his whole, daunting world. Autism is a sensory processing disorder, and often the chaos and colours of our world simply bamboozle him. He needs to retreat and reboot for whatever reason he cannot articulate. In his time, in his way. “Don’t talk to me, daddy. I’m a little bit busy” will be his delivery to us, in earnest.

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

It would be dishonest however of me to make the same claims. To talk endearingly and exclusively about the magic of Isaac’s autism would be a sleight of hand. I would be deceiving myself. The truth being that in the early days, if I could have waved a wand and made ‘the magic of autism’ go away, I may have done.

Too much pain has occurred, too much worry lies ahead for such sentiment. Too much pining for little pleasures like play dates, parties, and knock about care free fun that I’m too feeble to supress successfully; the consolation that he’s content to miss out, tepid comfort at best. Too many experiences where we just can’t brook the dam-breaking tears. Too much time selfishly feeling stultified by the shackles of routine, the hours spent on trains (a treat for Isaac, at times a tedium chamber for me) weekends at home spend wondering, What if?

No, autism, for me, is about reality, not magic.

Our obsessing of Tabitha, Isaac’s sister, lands a heavy blow to any beautifying of autism anyway. At six months old, assessing any signs of the condition is perhaps futile. Still, we struggle to not put an autism filter over every tiny thing she does or doesn’t do. Eye contact, eating, initiating gestures. Poring over pictures of Isaac at the same age, looking for clues, doing detective work like some sort of a crank doctor. It’s driven by an oppressive fear that if not tamed, could override everything we do, feel or think. So far, so controlled. But when I can’t halt my darker trains of thought of imagined missed developmental cues and subsequent similarities with Isaac, I hurtle to a precipice.

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

 

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

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

But then, the talk teetered on pushing Isaac that little bit harder, challenging that little bit more. I can’t stress the goodwill, application and drive of his teacher and the school in general. But my sensitivities arose, my ‘normalising’ autism antennae were on high alert. Isaac was coping in the playground on his own better; less and quieter stimming, was seen as a major positive.

Underneath this steely resolve Isaac was showing, is there, however, a fragility that ferments until set free at home? After school he has become tremendously trying. Mysterious bouts of negativity ooze from him, desperately hanging on to the minutiae of routine, hoarding his magazines, eating even less than normal. His lunchbox often remains untouched despite his now ‘integration’ into the dinner hall. The noise he may be managing, but to the detriment of his diet. These are the fine details of autism not everyone grasps.

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

 

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

The antidote to this was the next day and a visit to one of a very few schools specifically for kids with high functioning autism and Asperger’s – kids like Isaac.

As we were shown around by one of those people whose affinity with autism is astounding, I struggled to stem the tears of hope. Expressive and reacting to the teaching, full of questions, these pupils’ autism was being handled exquisitely as they were able to break free when need be, talk in their own way, receive occupational therapy; at all times they were cajoled by professionals correctly and compassionately.

Highly, highly emotional, I could see they were happy, focused, cared for and celebrated. In fact, I could actually see Isaac in them. This was something I hadn’t experienced before. Usually, when I’m peering in from the periphery at family functions, disconnected from the dads-and-lads larks and japes, the boys I witness seem a different species to Isaac at times, so made-for-the-world they are, so conventionally developed with their dialogue.
In short, when I entered the school I felt like I’d discovered an autism-friendly, safe and very special whole world of learning and love. Normalising, the pressure to conform had no place. Yet life skills and the curriculum were at the core. Somewhere full of potential, free from the burden of fitting in.

Isaac has a lifelong condition that, for all its peculiarities – some predictable, some mysterious – means he will always be different to a degree. My job is not to smooth out those differences, however hard they frustrate me and him. Isaac is an effervescent boy – to crudely normalise him to fit into our world, would be to flatten that sparkle in him. And that would be unforgiveable.

Schools of thought

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

So I have reservations. A raft of them.

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

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

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

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

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

How do you value friendship?

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

Yet so often, Isaac is a roaring and adoring, larger than life social animal. Attentive to absurd games, ball throwing and bouncing, often his creation, always on his terms. All eye contact and breathless laughter. Infecting all in his wake with his own particular brand of jumping joy. Just ask his autism-informed, well drilled army of cousins.
It’s just that he can retreat into the solitude from the social swiftly and alarmingly. His universe-falling-apart meltdowns may appear indiscriminate, immediate and scary. His is a topsy turvy world where we are not what we seem to him, and him to us. Where who he’s touched by and who he touches seems arbitrary. People are bewitched by his personality or beaten by it.

A forensic of Isaac’s behaviours throws a spotlight on how ill-equipped he is for maintaining a friendship in the way we, as typical humans, believe they need to be. And may explain a reluctance to initiate friends, rarely referencing them, appearing content in his world.

Take eating. Isaac doesn’t appreciate his appetite; he’s barely aware of it. Articulating hunger is extremely unusual, unless repeating a phrase he’s heard. As such he has a finely balanced diet – resolutely at room temperature, ordered, bland, fiercely familiar – if anything’s off balance, it’s all off limits. Profoundly, from a social perspective, the process of eating is as fussy as the food itself. If the circumstances aren’t particular, he simply won’t eat. Or engage.

And of course, eating is that most convivial of acts. An organised chaos that slots into a code of human togetherness. Right from the early years birthday parties, eating is a focus – where kids feed their friendships as much as themselves.

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

His visual memory antagonises further, I would guess, so whenever he witnesses eating in groups now, he associates it with chaos and discomfort, thus explaining his unwillingness to be a part of things more often than not. Family functions see Isaac eat alone and away with only an iPad for company. Not eating together means not forming friendships, alliances and mischief.

This is magnified at school, where the dinner hall, with its clutter and shrill sounds, disturbs him too much, meaning he has a picnic with his Teaching Assistant. Quiet and separate. As a tactic, thoughtful and heart-warming. Ultimately though, him missing out eating with others is him missing out on making friendships.

The school lunches have fed his obsession for repetition. He mentions lunchtime the minute he arrives at school, needing affirmations and confirmations throughout the morning. By seeking safety and security through this lunchtime routine, friendship has perhaps been sacrificed.

Isaac’s physicality, his love of jumping and squeezing and bundling, has probably landed a blow for friendship too. It may just be over zealous hugs, but unable to channel these acts into organised physical play, the coordination, motor skills and learning perhaps too demanding, it can express itself keenly onto the other children. Despite never having an aggressive or sinister flavour, at worse he can be seen as a pugnacious presence that teachers attempt to manage through the toothless tools of explanation and discipline. He’s rather left out on a limb.

So eating, obsessions, repetition, routine as well as rough play – all critical to conventional sociability – must go some way to explain his lack of friendships. They mean he is missing important windows to learning social cues. The proof is his persona, and how he is – and isn’t – with his peers. Isaac’s propensity to play with his peer group is paltry. He appears to have no need for them.

Who knows when and if he’ll need them, and in what form. When I dare to look ahead, lying in wait are scary realities that risk a friendship desert. Isaac could well be the chief teller of tales, considering how honest he is and will remain. Not a perfect role for the playground. As sarcasm gains serious traction, Isaac could lose whatever hold he has of childhood chatter. However much he adapts to surroundings, he could well need to flap, and chant, ape and repeat. Right now there appears to be a fondness of Isaac’s foibles among his school group. Indeed, the school do say he is beginning to show the signs of forming friendships; with adult support this could happen. But will they be in place before the currency of friendship shifts from accepting to alienating?

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

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

Because as I’ve said, Isaac is very much a social soul. And it’s who his visceral and intense playful experiences are with that’s instructive. When friendship is distilled to a simple positive interaction with laughter as rewards and absolute attentiveness, Isaac’s connections can be electric.

Demonstrating his wonky position in the world, Isaac thrives with kids younger or older than him. And adults. Like that of his sixty-something grandfather. One of Isaac’s truly authentic, unreconstructed best friends. Someone who will be the centre of Isaac’s world when he’s with him, because that’s where he plonks himself. In Isaac’s eye line, responding, cajoling, communicating, and collaborating. Large and loud and in each other’s faces, this pure play is rewarding for both grandfather and grandson, because both give their simple, uninterrupted all.

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

 

These shows of affection and connection demonstrate how, rearticulated and redefined, friendship is obtainable and straightforward for Isaac. In fact, distil friendship further into a simple altruistic act of being tender and loving though, and Isaac’s sociability is supreme.

Because nothing demonstrates Isaac’s huge reserves of love and affection than the adoration – and little obsession – of his newly arrived younger sister, Tabitha.

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

“Can I kiss Tabitha?” is the question most heard in our household. Followed closely by “Can I carry Tabitha…all by myself.” Both of which he does do determinedly and intently, but, I would fathom, without an ounce of malice or revenge or attention grabbing. All emotions I imagine can play a part, but have been absent here.

(Now’s not the time to mention his insecurities that are running amok. Manifesting themselves into a heightened need for routine, defiance and more inflexibility than usual. The point is that there is a pure love for Tabitha.)

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

 

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

 

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

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Autism and thinking differently

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

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


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


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

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


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


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


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


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


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


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


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


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


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


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


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


 



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


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


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


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


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


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


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


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


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


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Autism and the facts of life

I sometimes feel I’m forever stuck in a storm of autism statistics. Raining down are brutal truths that affect all about bullying, exclusion, lack of provision, low educational achievement, poorly trained teachers, homelessness, unemployment, depression and more. Facts and figures that seem designed to floor people at worst or fuel their fight at best.

Then there’s the genetics research and studies around that swirl about in people’s peripheries and remain there until they become relevant. Like the likelihood of a younger sibling being diagnosed with autism.
The dilemma of a second child had weighed heavy on me and my wife. Not so much setting the weather of our well-being, but certainly unbalancing it somewhat. Pretty much from the day Isaac was born.

Isaac’s birth was barbaric. After a lifetime in labour, the doctors, brandishing ghoulish looking implements, set about extrapolating our distressed boy. Prodding, plunging, pulling. At one stage, the doctor was yanking at an instrument suctioned to my boy’s head in the manner of dislodging a particularly stubborn cork from a bottle of wine. With such force that his temples were throbbing, arms’ shaking, and veins pumping. Eventually, Isaac was dragged out of my poor, poor wife, resembling a bewildered creature washed up from sea.


I’m not aware of any conclusive research linking traumatic births with autism. Anyway, it’s not somewhere I can psychologically afford to go.
My wife talks of numbness and delayed shock. Of horrific memories. That, in some sort of perfect storm of parental crisis, surfaced violently and vividly at exactly the time Isaac started missing developmental cues. Whilst other mothers talked of amazing times, emerging from the first year with a fabulously alert and exploring child, Isaac seemed stuck. As well as being beaten by his behaviour and full of anxiety, my wife somewhat cruelly was given the added burden of terrible birth memories.

Being selfish and ashamedly self-pitying, I felt practically punished by being around family and friends jollily procreating at a rate of knots. Defensive and depressed, comments like ‘Isaac would benefit from a sibling’ cut through me. I felt sorry for myself, my wife and Isaac. My wife had more humility. But perhaps felt it more personally. A sense of failure swamped her. We were in a rotten place if truth be told. We had a distressed, delayed child who was disrupting our lives, if not to breaking point, then not far off. Did not having a second highlight our pragmatism or shine a harsh light on our inability to cope with parenthood?


And then at diagnosis, the second child issue got a little more complex. As sensitively handled as possible, the paediatrician’s parting shot was to tell us that if we had another child he or she would be 5% more likely to have autism. Unlikely, but still (kind of) significantly more likely than the standard one in 100 that Isaac had become. Now there was a whole new imponderable – another child might have autism.

Yet I don’t actually recall us dwelling on this in the days, weeks, and months after diagnosis. Perhaps autism had liberated us from the corrosive second child obsessing. It certainly ceased the questioning of our parenting abilities. What we were unified on was a steadfast focus on Isaac’s welfare. To embrace the condition; to fight for him; to make up for his troubled first years. And in doing so, we’d become a confident ‘one child’ family. Proud to say it to people. Solely concentrating on Isaac was the sensible thing to do. It sapped all our energy and time. It was best for us, and best for him.
That was the case for the best part of 18 months. It started to dawn on me though that I’d perhaps mis-read – or not read – my wife on the issue. Yes, I believed autism allowed her to dial down the intensity of desiring a second child. Yes, I witnessed her brilliance with Isaac and love for him, making a mockery of any mothering doubts she’d possessed. Yes, she had confronted Isaac’s birth and was dealing with the demons.

But behind our professing peace with having one child, had she really let go? Somehow I had assumed that, like me, she had. The risk of another child with autism was too great. Surely she agreed?


Confronting it not out of the blue, but certainly unexpectedly, I think I’d got things a little wrong. She welcomed the conversation. All conversation in fact.  Indeed, back to that torrent of autism truths, one that’s particularly torrid is how many parents of children with autism split up. 7 out of ten. I by no means feel threatened by that, but it’s a useful tool to remind myself that where autism is concerned, transparent and honest discussion is encouraged at all times.


My concerns were now all centred on the not so solid stat (some say higher, others lower) of likelihood of autism in a sibling. She countered me at every turn.

Autism is a spectrum. Children with autism are as individual from each other as children without it are. So if a sibling does have autism, he or she will be different from Isaac.

Indeed, Isaac, as my wife puts it, now comes with his own instruction manual. We know how to handle him, what pushes his buttons, makes him happy, sad, calm, whatever. That manual won’t be applicable if we were to have another child with autism; it definitely won’t if we have a child without.

What about the stress of seeking signs that a sibling would have autism? Yes, she agreed, that would be something to watch for. But it’s totally and utterly out of our control and the likelihood is incredibly low. Remain strong. If something is out of sorts, seek help. So much strain with Isaac was because we didn’t know. Should these challenges repeat themselves with another, we will be equipped to a certain degree.  

Seemingly swiftly, but actually deliberately and methodically, she had confronted the second child issues, the probabilities and problems, and emerged confident and content.
I was flummoxed. If she could accept the risk, I surely could too. What was stopping us?

Isaac knows there’s a baby in mummy’s tummy. He processed the information early on. Processed as opposed to comprehended. Even with the baby weeks away, what he really understands I’m not sure. However, his loving, caring behaviour with a baby nephew is reassuring.


The baby’s called Paul Isaac tells us, even though it’s a girl. A girl is statistically less likely to have autism, but more likely to be underdiagnosed. More information that is baffling and not enormously helpful.
I worry that when the baby cries Isaac will be upset because that’s how his mind works. I don’t fear jealousy or vying for attention though because that’s not really in his nature.  

What I do know is that as a unit we are prepared as well as we can be. Which means, above and beyond, sticking to the rigid routine for Isaac and not swaying from it. Now, when the baby’s born, and beyond. To always appreciate his autism, so he and we can cope.
Maybe that’s what enabled us to eventually entertain the possibility of a second child. An awareness of Isaac’s autism not a fear of a sibling having it.

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