Huff Post Article: A Review of BBC1’s ‘The A Word’ From a Father’s Perspective

This article originally appeared on the Huffington Post
An abundance of autism signposts pings off the screen in the opening 10 minutes of this broadly realistic drama. Our five year old Joe, earphones clamped on, sternly but perfectly sings the lyrics to songs. He closes a door and opens it before entering somewhere. Hovering on the periphery of his own birthday party, he twiddles and repetitively plays. Musical statues is used as a neat device for the viewer to decipher Joe’s difference: to his own beat (literally) he jogs on the spot, back to the room, never freezing with the game proceeding anyway. He doesn’t blow his candles out or respond to Happy Birthday.
It’s a clever start. We don’t know Joe or his personality, his back story or future. But by efficiently creating some scenes to be super-designed for autism amplification, the audience has been given a kind of ‘diagnosis for dummies’.
So far, so relatable. My son at five (he’s now eight) had echoes of all these traits, and seeing them clustered together strikes a sad chord pitch perfectly. Though as the story progresses, it’s clear the boys are a million miles apart, which is a boon for autism awareness; people with autism differ wildly from each other, but the spectrum encompasses some spottable similarities.
Joe’s mum wills him to be centre stage, but he’s barely a bit part. The parents appear to take it in good grace, a gruff grandpa bemoans the idle boy a little. A picture of a boy with autism integrating as best he can with tolerant parents appears to be painted.
And then a jolt, as we realise what we’re seeing loud and clearly, the parents aren’t (there’s definitely a reality in that). It appears there’s been no diagnosis, not a conscious denial, just an acceptance of Joe being a wee bit odd. Others who have witnessed his behaviour ask questions, tread carefully, are met with defensiveness and incredulity – and so begins their autism journey so to speak.
Joe not having a diagnosis but the parents’ effortless adaption around him was quite a rug pull for someone like me, so immersed am I in autism, and so exhausting was my experience pre-diagnosis. At the equivalent time in my life, I doubted, difference shouted at me, Isaac yelled in distress day in day out.
But that’s not a complaint with the drama. Theirs is an authentic human response, sprinkled with the complications of human beings treading on egg shells, or stepping too far.
At the point Isaac displayed these social impairments, obsessive behaviours and delayed communication, we were ragged with worry, whereas Joe’s parents seem equable and contained. Sure Isaac had eye contact and interacted and emoted – and the drama at several point successfully quashes these generalised autistic stereotypes – but he flapped and wailed and roared.
So sinking in despair, we ferried a heartbreakingly unhappy child to doctors and therapists and specialists searching for something – anything – that would appease our son, make him content, calm, conventional even. Whilst around us, well-meaning family and friends questioned our concerns, pointed to repetition of phrases as language development, normalised his tantrums, embraced his eccentricity, even the mechanical repetitive play was sugar-coated as ‘exploring the world in his own way’.
I must stress, now we have a practical autism support network around us so fluent are friends and family in the condition and so focused on learning about it, integrating him, driving awareness, celebrating difference.
There’s a surge in similarity when Joe is eventually diagnosed. Shock and sadness spread through my wife and me when the paediatrician uttered the word autism. The label was something of a lifeboat so at sea were we with how to manage our son, but autism is a dramatic and loaded word for the uninitiated.
Unlike Joe’s parents we knew Isaac was struggling desperately and life was wonky at best; like them, we knew next to nothing about autism.
As the paediatrician delivered the news to Joe’s parents, I was back in the room, as vividly as I’ve ever been in the last five years. The baffling assessment that despite being affectionate, polite and having eye contact, the little boy had communication problems and atypical emotional responses. That all that twiddling was self-soothing was largely to do with sensory processing struggles. How being able to hear didn’t stop severe auditory processing challenges. The clarity of observation clashed with the realisation that I’d just leapt on the most daunting, never ending learning curve. Joe’s parents elicited identical emotions.
Then the episode’s final event as the family commenced life with autism was a painful, heart wrenching watch. Joe’s lack of interaction at a birthday party, solitarily not even parallel playing, just appearing in pain pondering, planted me back to a nadir. Joe’s dad, beckoning him, is meant by a violent response by the confused, sad, unable to articulate boy. Whilst judgmental parents stared appalled. Just like the time I left Isaac at nursery, post being hit and scratched, his routine battered, marooned from the other kids, a mum visibly scalding the egregious dad and naughty child. After which I broke down, unable to brook my own tears.
I just wish I could have stepped in and reassured Joe’s dad that things will get better. Obsessions will come and go, your life will change for ever, and there will always be an autistic sting in the tail. But with the right intervention, support and understanding, things will get better.
(I always try to respond)

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

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

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

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

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



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


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

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

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

(I always try to respond)

Kindness is everywhere

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

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

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

Mandie Adams McGuire ·

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

Matthew Davis

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

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

Matthew Davis

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

Jessica Lerche ·

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

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

Matthew Davis

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

Alison Bowyer ·

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

Matthew Davis

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

Zoe Smith ·

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

Matthew Davis

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

Zoe Smith ·

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

Peter Mishcon

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

Matthew Davis

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

Peggy Maki ·

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

Matthew Davis

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

Peggy Maki ·

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

Peggy Maki ·

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

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

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

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

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

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

Dec 10, 2015 5:57am

 

Adopting autistic traits

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

 

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

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

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

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

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

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

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

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

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

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

 

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

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

 

Matthew Davis

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

 

Walkin’ on the Edge

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

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

Jun 11, 2015 7:22pm

 

John Murray

Dear Matt,

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

 

Matthew Davis

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

 

Lindsey Barry

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

 

Matthew Davis

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

 

Pamela Buller

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

Father’s Day 2015

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

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

His mother.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

(I always try to respond)

Always feeling autism’s presence

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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(I always try to respond)

The weight of the world on tiny shoulders

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

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

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

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

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

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

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

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

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

“Why has Tabitha got no clothes on?”

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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(I always try to respond)

Leaps in development, bound by autism

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

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

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

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

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

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

 

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

 

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

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

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

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

 

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

 

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

 

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

 

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

 

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

 

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

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

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

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

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

Blog of the day on Mumsnet – 2nd April 2014

 

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

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


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


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


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


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


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


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


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


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

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

 

What’s normal?

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

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

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

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

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

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

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

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

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

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

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

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

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

 

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

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

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

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

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

 

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

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

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

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

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