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

 

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 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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Am I smothering Isaac with love?

I would predict that the universal desire to protect one’s child is particularly pronounced in parents in (or circling) the autism universe. My inner voice certainly announces with cut through clarity instructions to guard my little boy’s hard earned happiness with my life.

Isaac is the unabashed star of his own show, and his star needs some major pampering. As his head hits the pillow every night, the next day’s lines and events (an always rehearsed, fascinating mix of the familiar and the new) are finalising themselves into a detailed script that will be engraved in his mind by the morning. The script calls for a diligent director (at times hands-off, at times hands-on) who knows him inside out and can respond accurately to the many, many cues. From ‘I need to shake my flannel for a little bit’, to inquisitively but continuously confirming between 8 and 830am that ‘daddy, you’re having breakfast at work!’ to recounting in forensic detail the contents of his lunchbox down to the last piece of mango or sausage. Any improvisation is highly sensitive and has to be handled as such.


So my now hard-wired autism-informed thinking obsesses that his daily schedules strictly follow the routine, learned phrases (with their set tones) embedded in his mind – and, most importantly, that they are stress free. I am adamant his activities are micro-managed to the point of mollycoddling.
The first threads of this deeply woven, impenetrable security blanket that I shamelessly smother him in were sown in the Paediatrician’s surgery moments after diagnosis (two years ago). Ground Zero. When as much as the ground falling from beneath us, there was an uplifting, almost spiritual release of so many anxieties that could be now attributed to autism. And therefore laid to rest.

Fussy eating redefined itself as a need for identikit dinners, uniform shapes and colours. No longer would I fret about his narrow, ‘tut-tutting’ diet, now that I understood a mish mash of sloppy, multi-coloured and multi-textured food could be a physical assault on someone with his taste (and other sensory) processing limitations. With his only option to shut down.


The socially unacceptable ipad accompaniment to food we could accept with alacrity, realising this was a coping device for him to shut out the lights, sounds and colours of everyday life that we can so seamlessly bed into our environment but would be such an uncomfortable clash of aural and visual misery for him.


Pushing a scooter incessantly (for what would seem like hours at a time) the wrong way was the right and logical way for someone who learns bottom up; someone who’s creating his own self-contained patterns; someone who’s establishing how to make his own peculiar way in the world. This pushing of the scooter, one of an arsenal of repetitive behaviours, and the difficulty to remove himself from it, I could gladly, calmly and confidently cope with. Getting to lateral – for others, natural and effortless – solutions like riding a scooter meant an exhaustion of all the other workings of said scooter first. Now he rides it seamlessly and gloriously; I never thought that would happen.


Transition is tremendously testing for him. If we never got to leave the park before dusk, so be it. If getting out the house and away from what he happened to be doing, got to him too much, we’d stay put and miss parties, school, appointments, whatever.


Whilst the explanation of these eccentricities gave me the resolve and permission to adapt myself to Isaac’s behaviours and needs, it was one specific autistic trait that raised by determination to shield Isaac from this harsh, harsh world; the one that cemented the diagnosis and that I’d not seen: the non-playing with peer group trait.


Playing with peer groups is perhaps the first and fiercest test of imagination, improvisation and intuition a child can face. And a child with autism will often flounder. This knowledge, vividly clear in the following weeks and months by Isaac’s lack of social impulse and disinterest of kids at nursery, brought to the surface the deeply held anxiety that he may struggle with friendships. This observation contributes to my cosseting of Isaac to the current day.


Hearing his propensity to play solo at school saddens me. Seeing kids his age roam together at family functions, heady with the thrill of burgeoning bonds, causes me a degree of upset I have to admit.  It can still take enormous endeavour for me to not to envy. And I am a little ashamed to say that this, too, has contributed to my approach as an over protective parent.

That it’s an approach that’s been absolutely and totally instructed and informed by autism I have no doubt. But it’s debateable that it’s a wholly brave approach. Unlike the approach of my wife.  My wife, who’s not just a colossal force for good in Isaac’s life. But in recent months, a colossal force for change in it too.

There’s not been a singular, resonant event where she’s forsaken protection for pro-action. But a succession of tiny ones, very often barely noticeable by a dad blinkered to cushion his boy from anything resembling a challenge. Somewhat regrettably I may not have noticed that the little, regular challenges my wife puts Isaac through, are the fuel behind the bigger steps:

Somewhat splendidly, Isaac eats a mouthful of food, finishes, and then says with aplomb ‘I’ve finished, I can speak now!’. Table manners, something I would be happy to shield him from, are with us, uniquely Isaac type table manners, but table manners nevertheless.  Which, combined with his plethora of pleases, thank yous and you’re welcomes, make him sound and behave like a charming little robot.

Exuberance is Isaac’s chosen form of expression. Squeezing, joyful slapping, physicality, screaming. I have thoughtlessly tended towards revelling in this slapstick and got physical with him. Showing him few boundaries. This behaviour isn’t best placed in the company of unimpressed teachers and non-complicit children. When hearing Isaac jokily repeat ‘don’t do that!’  at home, clearly not understanding the call of frustration from a fellow child, I feel tormented love for Isaac and do little to rectify it.


However, my wife’s dedication to giving our son alternatives and solutions has softened the exuberance, made it acceptable, socialised it. So she’s taught Isaac to claps effusively when he’s overwhelmed and overexcited. Which he’s managing to do a lot. And takes bows. Not necessarily prompted. It’s rather heart melting and his antidote to physical, inappropriate expression.  But it’s not always forthcoming and it’s often hard work.


Another example is the power cut that recently put at risk Isaac’s breakfast diet of train clips on YouTube. Fiddling with my phone, fearful for Isaac (and for me given the consequences), I couldn’t entertain anything but a desperate attempt to salvage some train footage from somewhere, anywhere. My wife, aware how stories are now impacting on Isaac, referred to the power cut on the kids’ programme Peppa Pig which he loves, feeding his imagination, whilst contextualising something. She consoled him, knowing he’s responding strongly to emotional language. After a tough, tearful few minutes, the situation made sense in his mind. Proudly he compared the power cut to the Peppa story and he had a coping strategy in place.  

One last thought: My wife listens out for Isaac’s new sayings and uses them as tools to push him to do more, go on bigger outings, permeate some elasticity into the routine. ‘Can we tell daddy?’ is something Isaac says a lot right now. The danger of constant repetition for a child with autism is that it can rapidly become a meaningless habit. But she grasps his sayings and uses the tiny window between learning it and then habitually repeating it, hence giving it a real meaning. More than a meaning, she’ll use it as a device, a punctuation to help navigate the day and therefore fit more in, widening his and our horizons. In other words, ‘can we tell daddy?’ has become seriously useful for Isaac’s movement and appetite for moving on during a day:
“Let’s go to the dry cleaner, then we see trains.” “Can we tell daddy?” “Of course. Then we’ll go to the butcher’s and play in the park.” “Can we tell daddy?” “Absolutely!”

And that is how the day pans out. A simple saying has become an invaluable transition tool, enriching and enhancing the day’s activities.


Isaac has only flourished as a result of this little but continual pushing from my wife, this considered  and careful challenging of him, this loosening of the protective grip.

For Isaac’s sake, I need to also let go. Just a little.

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A Grand Day Out

This article originally appeared on Enable Magazine

Family days out should be dreamy affairs, not the stuff of nightmares. But with the autism-unfriendly attributes of spontaneity, crowds, noise and the unexpected staples of any trip or mission, going anywhere can be a high wire act.

Which means when venturing out, seeking sameness becomes a priority. With Isaac’s default setting being the solace of repetition, uniformity and no surprises, train trips are a regular outing. Tube trains to be specific.
Positive side
The structured map, identical carriages and sounds, and general order and logic play to his linear mind. I don’t quell his exuberance for the arrival of a train because it’s a genuine expression of joy. I do feel a sense of tedium during journeys that can be for hours at a time, but this is balanced by a positivity.
The whole tube map seems to appear in his mind’s eye, each station, line and colour, a kaleidoscope he lives and breathes. And as a platform for dealing with change – however minor – trains provide a useful tool. He can  manage delays and lines temporarily suspended as they make sense in his safe and completely comprehensible world. Just about.
However, forever catching trains means missing out on other, perhaps more constructive, days out. Which is why I’m grateful for two recent conventional days out that managed to align the often mutually exclusive child-friendly and autism-friendly features.
Sense of ease
Our first successful foray was to The Science Museum for a special morning for children on the autistic spectrum. It was a wondrous few hours. Roaming free in the sensitively lit crucible to discovery, Isaac could interact or  detract at his will.
It meant he could expend energy riding in the lift, loudly read stories and displays, and not queue to play with exhibits. The sense of ease, lack of crowds and noise, plus having the space to be, all contributed to a stimulating morning.
Then a few weeks ago was the annual day for children with autism supported by our borough. It’s as much the peace of mind knowing boundaries are minimal, people are understanding and sensory overload is less likely. In the fluid environment of a modern well-equipped children’s centre, there was a healthy mix of organised fun, relaxation areas, and, critically, autism professionals to diffuse or cajole. Managing to cover me in paints and liquids and goodness knows what, Isaac received hoots of laughter as opposed to disagreeable tut-tutting.
Sadly, specially designed days out like these are few and far between. With fear of the unknown fuelling my cautiousness perhaps too much, most of our days out remain predictable and prosaic. Perhaps environments that lend themselves to autism together with a little bravery on my side would let us have a healthier diet of the all-important days out.

A New Kind Of Holiday

This article originally appeared on www.enablemagazine.com  

 
This year we took a holiday from holidays, so to speak. It was at times arduous (mainly for my wife Eliza), relentless and repetitive. But it was also as relaxing as it could be and reassuringly routine for our son Isaac, who has autism. And that was all that mattered. 
 
LOSING BATTLE 
 
Since Isaac was born, my relationship with holidays has been fractious. A trip to a peaceful Mediterranean resort a few months before his diagnosis reached the pinnacle of distress for him and despair for us. What we know now – that routine is his oxygen, his thinking rigid, and he’s never a second away from sensory overload – means we were fighting a losing battle daily. 
 
It rips my heart out how we were (unknowingly) letting him down. From forceful shepherding through maddening airports, to inconsistent mealtimes, to improvising the day’s events, to a need for armbands in the pool. 
 
But out of the chaos came the calm of successive UK-based holidays. Where mapping out the journey right down to the service station visited, meant Isaac knew what, where and when, and was a delight and delighted as a result. Photos of the cottage before we got there, his favourite books, specific foods. We’ve had an all-out autism-friendly couple of holidays. 
 
BREAKTHROUGH 
 
And then, last year – a big bold breakthrough. Engineered and orchestrated by my wife, we ventured on to a plane to a little house we knew in a cosy complex with a swimming pool. Despite Isaac being able to learn and speak in his own way and express himself better all the time, he and we are very much governed by autism. So meticulous planning was absolutely critical with visual cards navigating us through the hardest bit: the airport with all its twists and turns. 
 
He knew we were going “in an aeroplane, in the sky, to somewhere hot”. He could “splash about with pants and a jacket” (an inflatable one). He’d have all his books and DVDs and food with us. 
 
NO SURPRISE 
 
My wife’s preparation meant minimal surprise and small but consistent rewards led to a successful experience. A half hour – allowed for in the schedule – going up and down the escalators, provided sensory relief for him. On the plane, he actually enjoyed the turbulence which confirmed how topsy-turvy his balance and physical being is. It was a liberating and lovely holiday. 
 
We stayed put this year. Isaac was fine with it – he doesn’t seek adventure, escape from the norm. His holiday was blissful as he went on the tube every day, printed pictures, and was thrilled that days were panning out as planned. He also got to kiss his new baby sister Tabitha every day, which was enough change for him to deal with for one summer.

A Problem Shared


This article originally appeared on www.senmagazine.co.uk

Long before Isaac was diagnosed with autism at the age of three, I saw how the world, with all its peculiarities and obstacles, was that little bit more hostile for him – that little bit harsher. Seeing him struggle – often articulated as screams, anger and crying – seemed so unfair to me. I didn’t subscribe to the terrible twos or naughty toddlers view; there was something about Isaac’s tears that was different. Then the year-long punishing process of tests finally came to a conclusion in a paediatrician’s room with the words “autism spectrum disorder”, a tongue-twister that deliberately acts as a soft landing for the harsher truth: “your child has autism”. 


Autism now affirmed my regular bouts of heartbreak that accompanied Isaac’s regular bouts of distress. It was the alibi for his perceived anti-social behaviour. The subsequent learning curve was steep and rapid but was aided considerably by Brent, where I live in London. Its support structures involved workshops, relevant therapy, advice on education, and bodies to assist Isaac through mainstream or specialist school. My wife and I felt reassured that, as long as we fought Isaac’s corner, there was a team of people who would fight it too.

However, what I came to realise quite swiftly was that a chasm existed between what some people knew about autism and what most people didn’t. If the condition hadn’t touched them, it seemed not even to be on their radar; autism awareness was minimal at best. Professionals, experts, and parents who had accepted their child’s diagnosis, on the other hand, were awash with facts and immersed in the world of autism. 

I quickly benefited by joining an online community about autism where questions were posed and answered, discussions launched and new people nurtured with the help of its community champions. I also became aware of its presence as a safe haven from the everyday assault course of discrimination, generalisations, judgements, ignorance, exhaustion and difficulties that parents of children with autism battle with – to varying degrees – day in, day out. Things like the postcode lottery for support services only compounded the ignorance around autism. 

Crucially, it kick-started a need in me to write about autism as a cathartic personal response, coupled with a commitment to help spread awareness. I began writing in the emotional stories section of the site and became an autism campaigner by accident. 

I was able to express how I felt being at the beginning of my journey and it seemed to be well received. Getting regularly involved in discussion forums compelled me to do more and this is what inspired me to start blogging about life with Isaac. 

Simply writing as honestly as I can, about the plethora of issues one faces as a parent of a child with autism, has provoked an overwhelmingly positive response – one I couldn’t have predicted. People in a similar predicament seem emboldened and appreciative that I’m writing on their behalf too. Family, friends and now strangers who may not be directly affected by autism are grateful to be educated. Even professionals have circulated my blog among their staff, which is humbling. 

Recalling those early tormented years fuels my campaigning as much as fighting for Isaac in the present does. I know parents whose children haven’t got a diagnosis yet or are in environments impervious to the effects of autism. If sharing our family’s story helps them in any way, then our experiences will be serving the best purpose they can.

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