Tech talks

People. Isaac so often relishes them, yet so rarely relates to them. It’s one of the crueller features ascribed his autism. A skills shortage in handling that pesky, unpredictable species we call typical human beings – that belies a deep desire to communicate, be part of, socialise and interact.

He pines for a person’s presence and playfulness; yet is left startled by their byzantine body language; facial expressions and subtle emotions are a foreign dialect. Who smiles when they’re sad? When someone is wide eyed, are they joyous or on the verge? How can a stare be amused or angry? The face fibs.

Human behaviour has unwritten rules set in stone by the exacting standards of instinct and intuition.  Things unsaid, reciprocation and interpretation. Sarcasm, shades of friendship and physical space. To touch or not to touch. How, when and whom to hug. So much human interaction is horribly vague for Isaac. The irony being that the nuance and specificity particular to the unwritten rule evades so many rule-aficionado autistic people like my son. If Isaac’s mental rulebook is indelible with logic, the chapter on reading people is in invisible ink.

The dissonance between intent and inability plays out most sharply at playtime, or any unstructured kid zone. Where free play and frolics jar with the unbending Isaac. Coldly articulated as emotional and social delay (two traits he’d perhaps over index on in a less constrained, less judgemental universe) Isaac’s behaviour means he is swift to flat-line even in the confines of his specialist school environment (and especially not in, for example, a raucous ten year olds’ party, should, on the rare occasions, I nudge with all my hoard of strength, caution to the wind). He knows he wants to befriend and have friends, he’s not entirely sure how. He’s forever seeking connections, picking people out, willing a love in.

But once he makes that tentative step from solitary to sociable play, he can hit the wall. Isaac’s blunt negotiating can be an incursion into that loose but intricate web of a social setting. His thunderous approach tramples over chit chat, codes, school japes, the benign jostle, the impossible-to-describe mood and ambience (the old – Woody Allen? – quote about analysing humour is like dissecting a frog can be applied to analysing how people mix, gel, have chemistry; you lose the frog).

He’ll pull and push too much. Squeeze instead of share. Misread rapid wordplay between pals. Not take turns. My 4 year old has a comparative fluency in this untaught but universal suite of physical language and everyday expressions. These faculties flowed into her barely noticeably. Yet whenever I see her make an effortless gesture, comprehension, reaction, whatever, my heart races towards a dead heat of relief and regret.

Back to playtime, his self-control goes into exile. He becomes crotchety quickly. Sensory and physical problems sour things further, his need for stimulation making the squeezing that bit tighter. His low body awareness dulling his physical space-nous even more. Noise and brightness, as pointed for him as shards of freshly snapped glass. Tears, discipline, angst. Daily I’d imagine. But things rectify quickly. Supervision smooths things out, in and out of school.

Indeed, these types of experience suggest just a snapshot of his wider existence. They’re poignant but transient. Time spent with his ragbag of autism-very-friendly cousins witnesses a magnetic social presence; won over as they seem to be by his charm and unconventional collegiate approach. They adapt, allow, absorb his controlling ways; enamoured by his honest and heartfelt love for them. Perhaps this is that less constrained and judgemental parallel universe.

Not being in possession of the innate encyclopaedia of unspoken language and behaviours weighs heavily though. Somewhat selfishly on me too. When glum, I wonder why a chunk of this human skill we take for granted has somewhat evaded Isaac. After all, accessible academic text of the moment, Sapiens, by Yuval Noah Harari, suggests our abilities to cooperate and to understand social structures, to interpret interpersonal relations, started tens of thousands of years ago. Really? Not for everyone I’d fathom.

Yet, yet, yet. Progress is being made. Phenomenal progress. Social skills are high on his school curriculum. He’ll proudly, breathlessly, deliver a gold star day – chapter and verse:

“I didn’t pinch my friends today at playtime, I got over excited but I was able to control myself, it was hard but I reached my target. I helped another pupil not be angry in the classroom before assembly. Then we had lessons, in English we were happy and told stories…”

The method of slotting something not so natural, like socialising, into a something ingrained, like his routine, reaps benefits.

Of course, the role of language here cannot be understated – there’s an over dependence on it but it’s a blessing.

It was not always thus, what with his tardy and atypical language acquisition. The word by word, sentence by sentence, need to learn-it-all and say-it-all approach. There will always be something of the revision obsessed GCSE language student about him, labouring over translations, the walking, talking textbook. Announcing, scripting, regurgitating.

And I adore his formality of speech, his eloquence of elaborate over explaining. It’s the cornerstone of his memory. Facts wholly logged into his database, processed, then ready to be spat out at any time.

Yet this tendency to be literal; to use learnt phrases. Does it also represent a struggle with the spontaneity of language? Is it, in fact, a compensation for his lack of those linguistic gymnastics that ease sociability and act in a similarly illogical and contradictory way to facial, bodily language and the like.

Very, very likely.

Isaac is the pushy street seller – desperate to hawk lovingly curated titbits of knowledge (music, people’s birthdays, trains) whether you want them or not. Sheer semantic force elicits an approval, a logical response that’s as reassuring as it is uncomplicated.

He now knows and remembers everyone in his universe’s date of birth and age. Many, many people, much detail. And it’s always an urgent process to ask, confirm and remind.

“Papa Paul was born in 1933. He is 84 years old. Is he old or can he still run?” Or someone else, may be younger but not as sprightly, his device for managing the ambiguity of whether people seem their age or not, being whether they can run “or have a stick and therefore are old but not dead”.

Whether reported to me or the actual recipient, this one way alley of information is controlled by him and, whether answering a question for the first time or confirming for the umpteenth time, has a clarity he can comprehend. He can read if we are impressed by his knowledge, or engaged by answering a closed question.

While these parameters serve a purpose, proving his resourcefulness and abilities, and are his glue for social interaction, they have their limits; they become too self-serving. We seek an alternative, a way of improvising away from his script.

The long winded specific language and the miss – or non – read of human communication, over feed off each other. What Isaac seems to be demonstrating is how hard just being instantaneous is, living in the now, that everyday ephemeralness.

Which is why I am therefore thankful, hugely, hugely, thankful for the role that tech has started to play in his life. It’s filled the awkward chasm of confusion around communication. Genuinely, sensitively, intuitively. By humanising him in so many ways.

Smartphones and tablets aren’t screens that shut him out of sociability, they are the windows into a sociable world. Sometimes in the most unorthodox of ways:

Take Uber, that great, detested disruptor, the necessary evil. For Isaac, it’s so much more than a utility, it’s a loved enabler.

When we get what Isaac labels “the Uber taxi”, his world widens from the moment the time starts to tick on the app, the map appears, the driver details make themselves known. Driver’s name clocked, registration noted, countdown for arrival commenced. And then, in we jump.

“Hello Dervis, very nice to meet you, are you having a nice day? Mmm, your car smells lovely. I will put my seatbelt on then we can leave. Thank you very much.”

Greeting an Uber driver by his name never fails to elicit a wildly surprised but utterly genuine – utterly interpretable for Isaac – smile and appreciation. A connection is made. The atmosphere is warm, Isaac knows it. He has initiated this unexpected interaction. It’s kind of beautiful, calling an Uber driver by his name – try it.

Naturally, every Uber journey he’s been on, when, where to and from, and the driver’s name, get packaged up and parked up securely in his brain.

My Son Isaac tech talk

Then there are the filters, face swapping apps, emojis: in yer face – literally – exaggerated but truthful and funny visual languages. These form his daily diet of sumptuous silliness that simplifies his world, his take on people and things. Tools that far from swallowing him up, make him sweat with laughter. A catalyst for chat with us the shared screen, lowering the boundaries of opaque human speak, and streamlining his use of language to be more relevant, contextual and concise. Win, win.

For the first time recently, I saw him sit with a child his own age, who he’d just met, and bond through the apps. They take the sting out of over stimulation, free him from being too physical, and he eases up on the verbiage. Before, when a relationship may have ground to a halt, the power of tech now means it steps up a gear.

Such sessions, when successful, end in his talk of the day being “a laughing day, it was so funny. My eyes are wet. Can you wipe my glasses?”

Finally, onto messaging, texting, WhatsApp, whatever you want to call it. On an almost preternatural plain, we, as ‘neurotypicals’ – myself and my wife – have become more measured, sympathetic and considered ourselves, whilst Isaac articulates and communicates so much more openly. My wife messages with him, one on one, via devices, when not together, or even when in the same location. Freed from the congested roundabout of conversation, distractions flying, obstacles everywhere, he can pause, think and opine, in his time, in his space. With emojis to affirm his feelings he can nuance, “I’m a feeling a little happy today mummy, now I’d like to be quiet.” He’ll ask, “How are you? Can you tell me who your pupils are? Have you loved your day teaching today?” He’ll, at times, tell me, “We don’t need to talk any more. I’m playing with Tabitha now.”

He can manage processing and responding, liberating his emotional intelligence and expressions. By her own admission, my wife is having conversations with him, the like and gravity of which, she’s never had before.

Tech adds and complements. There’s no tweaking of the autistic traits that make him him. Indeed, tech in the form of the IPad has deepened, made even more immersive his singular train love. Making films and categorising. Time lapses, slo-mos, titling. Epics or documentaries. He arrives at the Jubilee line ready to shoot, and his greeting to it is anything but typical:

Unabashed, in raptures, he’ll broadcast:

“Ah yes, hello Jubilee line. It’s my lucky day. I love you and can smell it’s the new refurbished trains. Oh yes, I’m so happy. I won’t film people I promise.”

The technology key to his hobby, the happiness visceral.

Technology in all its guises is a major thing. Just not everything. However critical and crucial it is, it will never be a crux, only a catalyst. As he says:

“I’m legal to watch my iPad. Not the whole time though.”

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Seeing into the future

An empty day fills Isaac with the fidgets. A long weekend on the horizon, and his internal mind map mutates into a desolate landscape; where boredom billows and unknowns pounce. Anxiety begets a whole heap more anxiety.

It’s because struggles with social imagination (imagining anything outside one’s immediate daily routine) are an autism reality. Where a lack of concrete plans crumbles a layer of inner calm. It’s a diagnostic feature; the neurology backs it up; observations offer proof.

Be it in the near – or not so near – future, Isaac’s ability to visualise any abstract situations appears so blurry for him it agitates. Too vast the vacuum of plans and he’ll spin and spiral into a vicious circle of fretfulness. Where his need to unpick the unknown triggers a restless trawl of his planet sized memory. If the coming free Saturday in May is a villain, robbing his mind of a yearned for certainty, he will seize the identical day and date from last year (or the year before). Before in his town crier tones, he’ll pronounce the urgent news from the isle of Isaac:

“In May two thousand and sixteen, when it was my cousin’s birthday, the cat was in their house and I was too. I don’t like silly pets.”

And:

“The Bakerloo line screeches with a noise that’s not nice. It hurts my feelings. May the 16th in the year before this one was not a brilliant day.”

His heightened state will have sent the synapses searching and clamping on emotional memories like these – emotional memories being enhanced in the autistic brain, aligned as they can be with sensory issues and confusion.

This memory of Isaac’s. Sometimes the supercharge, the magic power, the zoom, to his dynamic mind. Sometimes just a mass of excess baggage, the old banger he tentatively tows behind him wherever he goes, spluttering, slowing him down.

Though maybe not as much as it once did. And maybe his internal imaging of what’s round the corner is less foggy. Isaac’s intensive education includes a focus on social imagination, with social skills and narrative therapy critical components. Further affirmation that Isaac’s own future is populated with potential.

The malleability of his mind is forever massaged. Meaning mechanisms to cope for situations devoid of detailed planning are proliferating. We, and him, challenge ourselves to not have everything in lockdown; loosening the levers we have to appease and assuage his anxiety. My wife will navigate him through his visceral despair that the diary has gaps he can’t plug, to a calm but unexpected place; concurring he may say, “yes, ok, we’ll just be at home, and have a relax”. It’s a slow, deliberate process. It works sometimes, it spectacularly fails at others. But there is momentum. We plod on.

The calendar is catnip for Isaac of course. Its symmetry, spaces to fill, order, all fodder for his voracious mind map. How it plays out in his mind is both mysterious and marvellous. I can ask him a question –with no calendar from any year in sight – what day a date in the future might be. For example, I’ll speculate a date, say, September the 15th?

“That’s a Friday. I know because I have brilliant technique.”

How I ask him is crucial. Simple, quick questions that call for simple, quick responses can be knotty for him. Such are his processing, and responsive language challenges (forever being developed at school naturally). A meandering approach to eking out answers, beckoning him in, and the magic of his mind will sparkle in this way. If he’s in the mood.

Yet there has remained an entrenched fuzziness to how Isaac sees – or doesn’t see – one unavoidable aspect of the future. Creating a year round buzzing wasp in our periphery that may sting at any time. And that is the expanse of school holidays that will always be hovering on the horizon. What will happen in them? What to do? Whenever he ponders them, it’s as if the rest of the year we are in a holding pen for them, and the uncertainty and (potentially catastrophic) concern that they’ll inevitably import – and perhaps wreak.

Over the past five years, the finality of the school year – how it’s executed, how it exists – has in the main been brutal. One day to the next, the sense of stepping off a ledge.

Now, there does seem to have been a slight softening; the edge is evaporating. In fact, this last holiday seemed to spell the emotional alphabet of Isaac’s well and not-so-wellbeing – previously there would have been a skew to the latter. The fallout from full days followed by less full ones actually coincided with a rise in resolve by him. Resolve to manage himself and regulate the psychological upheaval. Resolve to validate the voids. And it came most notably in the form of his enhanced love, and unrivalled knowledge of, the London Underground.

So you could say there has been a double-edged sword to this slicing of holiday anxiety; what with the tube being tinged for him, and us, with a degree of regression. The London Underground network has provided a protective pathway for Isaac for years, from the rhythmic repetition of journeys, to the sensory cues of stopping and starting, doors closing, gaps minded, maps memorised and so much more. The fear being further immersion in it can be further self-alienation from real life.

However, what has been novel, is Isaac’s utilising his tube train and station expertise as a panacea for times of stress like holidays – that’s felt purposeful and productive. There’s a sense to his scholarship. Transitioning from term to holiday witnessed Isaac turn to the tube for quick fixes to quash apprehension. The language and meter of the London Underground soothing him like perfectly fit Tupperware lids. His mental beeline making for the closed questioning tube map mindset; the mindset he hooked into in high octane fashion as day one of the holiday hit.

Indeed, on a daily basis, minutes turned to hours as he (solitarily) vocally reproduced the Jubilee Line. Making its unique sounding rolling stock beats, pitches and sways, muted his need to verbalise his distress at holiday nothingness, to complain, to control to not compromise and more. Aurally and temporally accurate, he virtually voyaged from Stanmore to Canary Wharf.

Other free time was snapped up perusing arcane train manuals, watching, rapt, homemade YouTube clips of tube journeys by like-minded hobbyists, and steering all chat in the direction of – as he articulates adoringly – “Frank Beck’s 1974 tube map – a design classic based on an electrical circuit diagram.”

The strategy for success, which my wife has in abundance, was making these daily domestic tube sessions finite. Come up for breath from stifling underground sessions, and he can be open to spontaneity, variety, sociability. He’ll be obstreperous on (many) occasions of course. But there was a definite freedom and liberation to the holiday. Bits and bobs done, people seen, places visited, relaxation achieved in the face of non-specificity.

Nothing beats leaving the house and turning his virtual tube world into a physical one. Beholden to too regular a train trip is unfavourable though. And locating an end to the means is important, not just a means itself. Journeys will always be wonderful for the patterns accomplished, connections made, signs read, senses satisfied. But during the holidays and beyond they can be a more positive experience by adding texture. Alighting for sightseeing, finding places to eat, whatever. Also there is his drinking in of the more obscure features that reside underground – tentacles of track, engine numbers, engineer updates. And on and on.

Moreover, the London Underground spawned a new enthusiasm for Isaac. Photography and the subsequent cataloguing, recalling, showing, memorising. Of logos, seat patterns, signs and selfies. “These escalators are wonderful, can I take a picture of them daddy.” Cue close up of, well, you know what. “The roundel is a logo to me, perhaps a photo of it will be a nice thing before the train arrives on platform 3 southbound.” Capturing such sights signals a new pictorial journey taking shape upon a well-treaded tube journey one. There’s a degree of beauty in the whole experience.

This discovery is not the most far reaching, but his passion remains undimmed. Sameness and predictability always rules on his missions. He’d forever favour groundhog over Phileas Fogg – 80 days round the London Underground would be a winner though.

Something conspicuous by its non-appearance in this article is that more bracing dimension of school holidays: actually going on holiday. This is primarily because filling time at home during holidays is not just the first hurdle but the whole host of hurdles that pepper the autism turf of empty days and all they elicit.

We did have an aborted week in Cornwall in the last school holidays however. It didn’t make the edit of our lives though; erasure triumphed. Whatever the parametrically-opposite paragon to symbiosis is, occurred: our downbeat demeanours at basic accommodation, rain and tedium ravenously feeding his distress at stray animals and dogs off leads, gulls flapping. Experimenting with a farm stay where cramped feeding trips in tractors, chaotic smells and sounds and raucous kids, a sensation of closed and impending claustrophobia and scruff. We all jumped on and off vicious circles of disappoint and downheartedness.

Real, planned breaks away will earn a place in the diary, alongside the scarier empty, stretchy days. Starting this summer with a resort booked abroad that already means pictures to look at, facts on the destination to study, an airline and airport we can contact, departure and arrival dates to be logged. All in all, it may have a less challenging effect than the days at home. Maybe. (Best ask me at the end of summer though.)

Right now, we are currently absorbed in the residue of his photography hobby and as summer holidays beckon, it hopefully will stay. It keeps him busy (beyond tube journeys) and is a weapon that withstands the rigmarole of life. He extends encounters with people, fills time, taps into creativity. Most brilliantly, perhaps it acts as a magical filter through which he can paint a clearer less obtuse vision of what’s in the future. A narrative aid, a self-authored picture book of his life. Helping make his world make a little more sense.

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Isaac’s new hobby is music to our ears

“Daddy, Eric Clapton is not a great man.”

It was one of Isaac’s straight-faced sirens-to-attention. Sincere and serious. Thrust out of thin air and declared in his testing, testing 1-2 1-2 cadence.

Before the resolve to this big sweeping statement:

“He sings a song called cocaine that also has the word cocaine in it. It’s only for grown-ups. It’s not a nice word. It’s not appropriate. He’s not a bad man. But he’s not a great man.”

A spraying of logic, staccato style. Stunning me into conversational barbed wire, with nowhere to turn. As is often the case after something unexpected like this, Isaac then commandeered an arbitrary way out (on his terms). Controlling the dialogue with quick-fire cause and effect questions:

“Does he live in London? What’s your favourite song that’s not for grownups? Leila? Is that sad or is it soft music? Is Eric Clapton still alive?”

My predictable responses give him his dollop of dopamine. Truths he knows, facts borne out of repetition that offer reassurance. The same questions he asks over and over; his solace from anything unforeseeable.

(How do we wean him off this incessant (irritating if I’m honest – sorry) and recurring behaviour. Can we? Should we? That’s a question for another (every) day.)

But what of that humdinger of a sentence that posited the greatest guitarist of his generation may not be great after all. Unambiguous facts constructed over time in Isaac’s head – about rude words, children and adults, song titles, fame – have concluded with this delicious super-rational statement. One that could stick with the saliency of bullet tested advertising line. Off kilter whilst veering not a jot from veracity. At once bafflingly lateral yet undeniably logical. His neutral, perfunctory delivery spicing it up with sublime humour. Let’s hear it again: “Eric Clapton is not a great man.”

Isaac’s not short of these gems that don’t so much punctuate his predictable prose as pierce it. But short of shadowing him at all times, ready to scribble at a second’s notice, I can’t hope to capture each one. In fact if I attempted to, I’d mirror him in his obsession to log events in his daily journal. Where he perfectly articulates and executes hundreds and hundreds of words of small, highly accurate details about his day (as opposed to précising a big picture). Another day, another chapter of exact dialogue at numerous times of the day, what he’s heard, what he’s seen, everywhere he’s been. We’re on chapter 63 now and, quite literally, counting.

Half perched on a chair, head cocked and squinting at the computer screen, rapidly typing with one hand, Isaac coheres physically and visually the disconnected components of his space with the delicacy of a torn up newspaper that’s been hastily sellotaped back together again. His dyspraxic compensation.

And there, as he concentrates and crafts, he resembles a court reporter tap-tap-tapping the minutiae of a case. The minutiae of the day being the major feature of his testimony that’s for sure. And my how I adore him reciting his new chapter from his journal every evening.

Whilst not in possession of these transcription and memory skills, I do subconsciously stockpile the particularly sparkly verbal festoons in the aforementioned Clapton mould. Another:

“Is heaven a planet?”

Parental platitudes about going up to heaven together with some embryonic astronomy have led to this? Possibly.

And a different take on the thorny theme of mortality:

“George Michael had a fragile heart as it has broken. Did he not eat vegetables? It’s a bit of a shame he died.”

Sayings absorbed, interpretations made, heartfelt emotion accessed. Resulting in vocabulary that feels both coldly constructed and warmly caressed. And uniquely Isaac.

Eric Clapton, George Michael, many a musician make up Isaac’s lyrical maxims. Which isn’t that surprising, what with the background (mid and foreground) music to Isaac’s life being just that right now. His need to nourish his musical nous can never be tempered.

Of course, his autistic mind has to march to a militaristic beat, so what he listens to where and when is bar coded. Before bed it’s MTV Rocks; in the car it’s the contradictory seductive and grating sounds of Smooth FM; out and about, wireless permitting, Spotify, the never ending virtual songbook.

Music is his all senses-satisfied playground. He’ll settle gently on a genre before hopscotching to an alternative. Then back and forth and sideways. Data gathering all the way. Song learning. Band members, their details, all failing to fill up his unassuageable appetite. Everything meticulously memorised. From the Stone Roses to Rolling Stones, Elton John to Elbow, Bobby Gillespie to Bob Marley, Luther Vandross to John Legend, The Pogues to The Prodigy – that’s just some alliterations I’ve plucked amid the A to Z.

One question that Isaac always asks during musical musings is whether Paul has worked with said artist; Paul being a music producer and song writer friend of ours. I often don’t know the answer, but knowing Paul as I do, err on the side of “yes, probably. But write to him to find out.”

The subsequent long letters from Isaac that only really seek monosyllabic yes or no responses are diligently replied with interesting – indeed iridescent – information. For example, despite not having worked with Oasis, Paul reports that as a very young man he was making tea when Oasis penned Wonderwall. And Isaac also learnt that Primal Scream were getting some production panache from Paul whilst Isaac’s mummy was in hospital giving birth to…Isaac.

Harbouring this human link to music has helped Isaac’s social skills for absolute sure. A friendship with Paul as well as the adoption to his musical mind armoury of less concrete, more conversational, narrative ‘stuff’ that pampers and personalises his explicitly factual knowledge.

And all the time, Isaac’s unconditional need to tell us back everything he’s absorbed from all musical sources mentioned (often via those closed questions once he knows we are in possession of the answers). Softening the rile of the regurgitation, for me, is the possibility of the dexterous linguistic detours that I’ve been talking about – Isaac semantic smashers that stop and squeeze you with a benign but bear like hug. Another: “David Furnish is married to Elton John so that must not be his name, he must be called David John.”

This Isaac. With his musical interests and diction-to-die-for in gale force flow is something to go with. Our journey has, is, and will be, anything but plain sailing. Coasting on castors, laid back parenting it isn’t. Nothing is linear. But when (for an hour, a day, a week, a month, time’s fluid at best) the handbrake turns an unexpected corner like this, there’s a free-wheeling, wind in the hair, rapture to the parenting ride.

Further embroidering this experience has been Isaac’s ever flourishing singing voice, melodic and beautifully choral, thus ramping up my dad jubilation to 11. Yes, it’s his sleep companion and handy stress release mechanism. It’s also his talent he’s started to share, that expresses, emotes, and spreads delight.

But with this parenting rush racing headily, always comes the risk of a pivot, a pot hole, a jolt. The auguries to any event around the corner always possess a degree of dread when autism is involved. How one handles them can best be quantified on an inner-self continuum of calm to catastrophe.

my son isaac singing

I was relatively calm contemplating Isaac’s recent school show, coming as it did during this magically musical time. Such is Isaac’s school’s celebration of, and tenacious sticking to, the concepts of difference and inclusivity and individuality, his music teacher had helped him create and rehearse an extraordinary piece. A performance, to accompanied bongos and light-techno backing track, of the 1990s Swedish Euro Dance aficionado Bass Hunter, ‘Now you’re gone’. It being from the dance, electronic genre, I imagine Isaac’s Spotify sessions had sourced it; the school obliged, encouraged.

Behind his bedroom door I heard him sing and practice. School sung his praises about his rehearsals during music class. Engaging Isaac on it would lead to evasiveness on his part as ever. But with such a foundation in place, with the time and date set, I erred towards calm over catastrophe.

And on the day of the show, from nowhere, a blanket refusal. An empty stage bar from the intro to the song on loop and a large projection of Bass Hunter. Lights, camera, no action. The ambience possessing the sorrow of a Pinteresque pause to proceedings. Any discomforting whispers in the audience barely muffing Isaac’s off stage screeching and shrieking of “I’m not doing the stupid Bass Hunter. It’s rubbish!!”

Nothing, no teacher, no parent, no persuasive elder pupil, would get him up there. No one had a clue why, or has since.

A little discombobulated, we all departed after the show. However sensitive, any mention was met with silence, or responded to with a different subject. Isaac showed no signs of regret, sorrow or ‘missed out’ syndrome.

Sympathetic teachers reassured us, emphasizing that the elaborate as-if-for-real dress rehearsal had been superb. And when I saw the clip they’d filmed of it, I was so bowled over I bawled my eyes out. Sung beautifully, funnily, extravagantly. Dancing, comic dancing. In the mic, pumping out the vocals, playing the crowd. Truly, honestly, beyond my wildest dreams.

My wife tentatively showed Isaac the clip. He smiled and enjoyed it; in a low key, ephemeral, don’t-need-to-revisit kind of way.

And that was that. The music plays on in our house. Isaac propels, reverses, stays still, propels. Sometimes all in a day. The speech is as eloquent and unexpected as ever.

So at this point, things get selfish. (Limiting my complete despair, the show had started with Isaac performing the narrator role in a wacky interpretation of The Hare and the Sloth with aplomb – except for distrust of the audience’s genuinely loving laughter, and not wanting us to look at him, so he’d hiss “stop staring” at us in between his lines).)

I can’t deny upset at his rejection. The chorus of empathy from parents of typical children connected with me for sure. All children rebel, show stage fright, are defiant.

Still, I’m sad. Still, the outright, impossible to remedy refusal seems as much autistic as not.

I’m not seeking to cauterise any confusion around Isaac. There’s just an acknowledgement of befuddlement. Where, sometimes, does his behaviour, feelings, expression come from? Will we forever feel the farrago of what are and what are not autistic behaviours?

The out of the blue nature affirms the complicated colour to our lives. Both in his impossible to predict actions like at the school show; but also with the wondrous Eric Clapton type phrases and blessed way of interacting with us and the world.

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The little sister who’s teaching us lots

The everyday lexicon of parenting has seldom spoken to me. Rather than chiming, the toddler-and-beyond truisms would detonate my brittle mind. “They grow up so quickly”, “she changes all the time”, “such a little chatterbox”, “blink and you miss it”. Being utterly unable to relate riled me and filled me with fear. Resentment would latterly rear its head, through the nursery and early primary years. Maybe it will always ripple ever so softly.

I imagine as Isaac progresses, the conventional parent chit chat will continue to gain little purchase; it will always sound more other tongue than mother tongue. Sleepovers and shenanigans, peer pressure, moody pre-teen; the offstead opining and turbulent sports trials; holiday camps, the haranguing and the hanging out. I might take the odd gulp, attune as I am to how different the sound track to our life with Isaac can seem. I may well be prone to ponder that put crudely, but kind of correctly, autism could amplify the more harrowing dimension of all this dialogue – puberty, adulthood, independence, the big, wide world. Another gulp.

In the main however, I believe in Isaac and his autism with my every fibre of being. Which means never ceasing to symbolise his difference, his otherness, his uniqueness, in the most dynamic, shining manner. What this does – and will always – mean is a mental resilience to refract fleeting temptations to relate (or not) to other people’s normality.

In reality, I can’t retain this resilience all of the time. Sometimes this mindset I’ve cultivated of a dedication to difference gets turned on its head. When I can’t help but listen to everyday stuff and compare to our journey with Isaac. It can leave me somewhat bereft, weighed down with what-ifs. Witnessing care-free kid activities close at hand can upset me. A picture, a social media post. Holidays packed with adventure and spontaneity and exploration. Typical, run of the mill stuff, effortlessly, chaotically experienced by so many. A world we don’t reside in.

And there’s been one such bit of ‘everyday parental experience’ recently that I’ve been forced to acknowledge in relation to Isaac. Something too close to home to ignore. Initially stark, subsequently maybe not. It’s been quite a force. A force of a filial nature:

Isaac’s sister, Tabitha, turned three and four months. Precisely the age that Isaac was diagnosed. Her typical behaviours so blanketly at odds with his at the same age; our experience as parents, the polar opposite. My vivid recollections of Isaac can’t help but vie with my current observations of Tabitha, a typically developing child.

The exhaustive year up to Isaac’s diagnosis I’ve talked extensively about. The crazed concern I felt in my marrow; the relief but realisation of something fundamental as the diagnosis was made; the daunting dawning of this new life with autism. If Isaac’s diagnosis felt like the ominous shifting of our universe’s tectonic plates, with Tabitha it’s more the universal spinning of plates associated with any young family (albeit with a time to time toppling of them). Such a contrast.

Thinking singularly about that time with Isaac will always burn like a fire. Learning the new language of autism strained and stressed: the rigours of routine, the speech therapy, the repetitive play. His limited social interaction needing unpicking and diligently putting together piece by piece, as it always will. Slow, deliberate, word by word, phrase by phrase, language acquisition was laborious and fraught. Seeing his sensory overloads in hyper real multicolour was torrid. Explanations alleviated our sadness ephemerally. Accessing the arcane services system took its toll; indeed, practically poleaxed by the process, if it wasn’t for my wife’s tenacity I may have tanked.

Versus, now, and our parental experience with Tabitha. This little, nutty, chatty, knock about girl amuses, annoys, shouts, smiles, hugs, stomps, moans. She dresses like a princess shrieking ‘Frozen’ lyrics, melting no-one’s heart but my own, waking weeping neighbours. She munches carrots and greens on the sofa, licks marmite from the jar, and yells, “No bed! It’s not fair” at ten at night. It’s exhausting and elating. In a simple, straightforward, binary way.

On the surface, as I say, two polar opposite parental experiences. Yet there’s so much more to these two parallel parenting streams. There’s a convergence occurring that’s edifying. The interplay of typical and difference.

I’ll start with something selfish, my confidence as a parent. The seething sense I had as a misunderstood parent has been soothed once and for all by the light Tabitha’s typicality has bathed on Isaac. Never have I felt so sanguine about my parenting skills. I now understand those parents (of non-autistic children) who tried, honestly but ill-informedly, to empathise with Isaac’s meltdowns and peculiar eating and slow developments. With no context, seeing solely Tabitha, I’d be the same. She can be picky about food, but confident choice giving by us and her diet expands, she’s cajoled. Like all kids, she’ll erupt, but we are able to fan the flames instead fuelling the fire. Autism in a non-autism friendly world will always be complex and challenging – and easy to mis-read if you’re not in it. I was doing the best anyone could do. I one hundred per cent know that now.

And if I’m wearing my parental pride like a gloating child garlanded with a gold medal it’s not at Isaac’s expense. Far from it. My pride in him propels by the day. Firstly, there’s the stuff he thrives on, thanks to his neurological difference to his sister:

“Daddy, because your office is northbound on Goswell Street, you can get the 143 bus to Archway and then 43 bus to Finchley Central and then walk to our home,” he responded instantly (referring to nothing other than, I surmise, his mind’s eye) when I told him my new office’s address for the first time.

And secondly, there’s the progress he’s making in everything he finds tough, because of the neurological difference to his sister. Everything from being able to loosen his literal learning, to chatting off the cuff.

For example, he has been harnessing his (awesome) ability to list literally dozens of band names and songs perfectly from memory, as a way of computing very basic things:

“The song by Bastille with the lead singer Danny Smith is called Good Grief. But the words Good Grief are not actually words in the song. And the singer’s name is different to the Band’s name, which sometimes happens. Like Chris Martin and Coldplay, and REM and…”

The facts, then, a catalyst for elasticising his literalness so he can decipher the slackness and illogic of so much speak. As well as being handy head-starters for him in joining the carousel of conversation that he finds so difficult to step on or off.

Plus he’s doing some nascent treading around more pertinent life themes:

“Nirvana died but there isn’t a statue because not everyone has a statue. Some just die and sleep forever. I’m a bit sad that Michael Jackson died. Noel Gallagher lives in London but the band Oasis are from Manchester.”

What appear to be non-sequiturs are actually ventriloquists for him making sense of big life issues – where people live, mortality, and more. All wrapped up with sociable intent. Him wanting to engage.

siblings_line_artOffsetting all this of course, is Tabitha’s world. The new normal for me.

There’s a flexibility, connectivity and versatility to Tabitha. That allow for a fluidity of movement, speech and general life. Where improvisation, shifting, adapting, reacting, are behaviours that simply occur. It’s apparent that even in its infancy, her language acquisition is so much more nuanced, malleable and multi-layered; further highlighting Isaac’s need for continued speech therapy alone.

She can accommodate the swirl and whirl to life that makes for a very human, meaningful and telepathic existence. One, of course, I took for granted before Isaac, before autism. The human condition in its most maddeningly impossible-to-define way. The to, the fro, the flow. Tabitha is naturally absorbed in it.

We can drop in on a kiddy disco, all bright, flashing lights, noise, copying dance moves, and Tabitha will take it seamlessly in her ever enlarging stride. Similarly, at ‘little kickers’ football classes, she scampers around an echoey hall, dribbling the ball, scoring goals, balancing, bounding, obeying orders.

Spatial skills, bodily awareness, coordination, sensory processing – issues and neurological abilities Isaac toils at admirably, but progress can be painstakingly slow. A raft of complexities (from taking visual instructions to imitating physical movements to fine motor skills) around everyday actions demanding years of occupational therapy.

Conversely for her, innate skills and cognitive abilities that seem to never stop multiplying. A mysterious osmosis informing her development, absorbing all around her. An immersion in her environment. The testing nature of transition between events not even a question.

One of those parenting phrases I’d previously abhorred – “she changes by the day” – is one I apply, ironically, daily. Picking so much up. Independence, curiosity, tangents to her sentences of 7, 8, 9 words and more. She infers and will summarise a morning at nursery.

Her filtering, editing, managing of space, sights, colours, shapes. Laying out clothes, learning to use a zip, putting things in their place. She continually, intuitively unifies her world. In a way that’s so abstract, often alien, to her brother.

The contrast is so acute. Only recently Isaac was carrying his big bag with a few books in and got edgy because he wanted to take his cap off. “Put it in your bag,” I nonchalantly said. “Can I daddy? Can I do that? Can I put my hat in my bag? Tell me please.”

Not only had it not occurred to him, it then seemed an impossible task. That his small hat would fit in his bag. The ample space in no way made sense to him in relation to his small hat. So innate, it’s deemed obvious. Yet complicated to the extent of nonsensical for him that he can’t access such a figuration.

If there’s not a degree of dolorousness I feel seeing – compared to Isaac – how Tabitha follows this path of expectedness, I’d be in denial. Much more powerfully, it serves a purpose as I’ve said, regards my parenting esteem and also adorer of Isaac’s extraordinary abilities. Put simply, comparison helps comprehension – of Isaac, of autism, of Tabitha, of typicality.

All in all, looking at Isaac through Tabitha’s eyes – and vice versa – has been less soul searching and more understanding. Ultimately though it’s been life affirming – because their bond transcends everything. For example, at the end of a (good) week, he’ll write a detailed letter to the family of his day at school. Heavy on detail, a not easy to decipher literal brain dump of what he’s been reading at school, comments heard, music listened to. And Isaac will bossily get Tabitha to read bits, to join in. They’ll perform.

At times, he may fume in her face if she gets too close or encroaches in his territory. Respecting his pleas for “personal space, Tabitha!” she has an almost mystical detection as to whether this is genuine. If she perceives his frenzied stockpiling of transport books is sending out serious distressed signals for example, she’ll decode that Isaac is “not happy, needs quiet time.” And patiently leave him be. Alternatively she’ll somehow know when to show stoicism which can give way to cuddles, “I love you Tabitha… do you want to play with my train set?” Either way, truces take place very swiftly.

Right now, there is a (behavioural and social) developmental alignment between the two of them in many ways. Watching similar cartoons, playing together, being creative together. Her a catalyst for his modus operandi of unabashed affection giver. No one kisses, strokes, says I love you, quite like my son.

Seeing Tabitha’s typical behaviour in relation to Isaac has liberated and lead my soul in an enlightened direction; with harmony the acid test. Sure there are pyrotechnics. (Anxiety, surprise, change, noise will always stalk Isaac, and he could retreat suddenly or react wildly or both). But it can be quite something when the two of them blend. Something symphonic.

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(I always try to respond)

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Why I keep talking about Isaac’s autism

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

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

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

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

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

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

“Willy Wonka’s got autism.”

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

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

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

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

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

 

 

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

 

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

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

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

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

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

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

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

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

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

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

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

 
(I always try to respond)

Peter Mishcon

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

 

Matthew Davis

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

 

Can Judaism play a role in Isaac’s life?

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

(I always try to respond)

Paul Davis ·

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

Paul Davis ·

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

Matthew Davis

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

Debbie Cantor ·

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

Matthew Davis

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

Sam Matthews ·

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

Matthew Davis

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

Ben Carlish ·

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

Matthew Davis

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

Penny Madden ·

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

Matthew Davis

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

Kiwi and Spoon

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

Sarah Driver ·

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

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

 

New label, more to learn

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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(I always try to respond)

 

James Carson ·

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

Matthew Davis

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