Autism and the facts of life

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

Then there’s the genetics research and studies around that swirl about in people’s peripheries and remain there until they become relevant. Like the likelihood of a younger sibling being diagnosed with autism.

The dilemma of a second child had weighed heavy on me and my wife. Not so much setting the weather of our well-being, but certainly unbalancing it somewhat. Pretty much from the day Isaac was born.

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

I’m not aware of any conclusive research linking traumatic births with autism. Anyway, it’s not somewhere I can psychologically afford to go.

My wife talks of numbness and delayed shock. Of horrific memories. That, in some sort of perfect storm of parental crisis, surfaced violently and vividly at exactly the time Isaac started missing developmental cues. Whilst other mothers talked of amazing times, emerging from the first year with a fabulously alert and exploring child, Isaac seemed stuck. As well as being beaten by his behaviour and full of anxiety, my wife somewhat cruelly was given the added burden of terrible birth memories.

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

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


Yet I don’t actually recall us dwelling on this in the days, weeks, and months after diagnosis. Perhaps autism had liberated us from the corrosive second child obsessing. It certainly ceased the questioning of our parenting abilities. What we were unified on was a steadfast focus on Isaac’s welfare. To embrace the condition; to fight for him; to make up for his troubled first years. And in doing so, we’d become a confident ‘one child’ family. Proud to say it to people. Solely concentrating on Isaac was the sensible thing to do. It sapped all our energy and time. It was best for us, and best for him.

That was the case for the best part of 18 months. It started to dawn on me though that I’d perhaps mis-read – or not read – my wife on the issue. Yes, I believed autism allowed her to dial down the intensity of desiring a second child. Yes, I witnessed her brilliance with Isaac and love for him, making a mockery of any mothering doubts she’d possessed. Yes, she had confronted Isaac’s birth and was dealing with the demons.

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

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

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

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

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

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

Seemingly swiftly, but actually deliberately and methodically, she had confronted the second child issues, the probabilities and problems, and emerged confident and content.

I was flummoxed. If she could accept the risk, I surely could too. What was stopping us?

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

The baby’s called Paul Isaac tells us, even though it’s a girl. A girl is statistically less likely to have autism, but more likely to be underdiagnosed. More information that is baffling and not enormously helpful.

I worry that when the baby cries Isaac will be upset because that’s how his mind works. I don’t fear jealousy or vying for attention though because that’s not really in his nature.  

What I do know is that as a unit we are prepared as well as we can be. Which means, above and beyond, sticking to the rigid routine for Isaac and not swaying from it. Now, when the baby’s born, and beyond. To always appreciate his autism, so he and we can cope.

Maybe that’s what enabled us to eventually entertain the possibility of a second child. An awareness of Isaac’s autism not a fear of a sibling having it.

Am I smothering Isaac with love?

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

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

So my now hard-wired autism-informed thinking obsesses that his daily schedules strictly follow the routine, learned phrases (with their set tones) embedded in his mind – and, most importantly, that they are stress free. I am adamant his activities are micro-managed to the point of mollycoddling.

The first threads of this deeply woven, impenetrable security blanket that I shamelessly smother him in were sown in the Paediatrician’s surgery moments after diagnosis (two years ago). Ground Zero. When as much as the ground falling from beneath us, there was an uplifting, almost spiritual release of so many anxieties that could be now attributed to autism. And therefore laid to rest.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Isaac has only flourished as a result of this little but continual pushing from my wife, this considered  and careful challenging of him, this loosening of the protective grip.
For Isaac’s sake, I need to also let go. Just a little.


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Connecting trains

Puzzling over Isaac’s future is a hazardous pursuit. It’s not just envisioning him in a socialised yet unforgiving world, a contradictory place of competition and compassion, which can set me off course for a day. Keeping a grip on reality has also meant putting any hopes and dreams on hold.

Actually, those abstract – seemingly starting in utero – educational aspirations, and their accompanying agonies of catchment areas and private schools, never became more than that: abstract. Before abating to absolute non-existence as autism and its challenges took over (schooling becomes an obsession of course but for very different reasons). 

Much tougher to shake off have been the softer dreams that smooth the childhood journey. Like the first best friend, sleepovers, magic shows, dressing up, leaps of imagination, signs of independence. And overwhelmingly, that bastion of father son bonding, football.

Pre-Isaac I’d been pretty sure that I’d have a little boy who, like me, loved the game, and specifically, Crystal Palace Football Club. It’s good old-fashioned dad fodder. Taking a son to watch his (and your) heroes is a wonderful part of our country’s DNA. Surely it would be in my DNA too?

For now though I have to live with the truth that football and Isaac are not ideally suited. Playing will play havoc with his hypo sensitivity and permanent off balance sensibility; not to mention his currently clumsy coordination. Rules that are frequently flounced and fairly flexible will collide horribly with his rigid system – however developed it becomes. Teamwork as a concept for his age group is in its infancy, but still he would miss its rudiments of complex social cues, reciprocity, instinct and competitiveness risking him being a misfit.

Watching football demands fluid sensory capabilities, a stark contrast to his see-and-hear-all take on the world. Successfully spectating involves real time visual editing of looking this way and that, from periphery to centre stage, in and out of focus, blurring, ignoring, focusing again. In the full and frenzied nature of a football match, the difficulty he’ll have deciphering means his coping mechanism of singular repetitive behaviour would be the only remedy. All this explains why the presence of any football in his vicinity has been a little bewildering and pretty much blocked out.

And although individually surmountable, he could well crumble under the combined effects of a live game such as the crowds, lights, noise, stewards shepherding us about, unpredictability, flowing narrative, oscillating moods, partisanship, nuanced comment. Why do patterns of play always change; why aren’t outcomes identical? Altogether an avalanche of autism un-friendly attributes. So the heralded visit to first game with my son is perhaps the last thing I’d contemplate.

Which means I have to currently live with this clipped dream. Contentedly it has to be said when compared to the distress I’d put him in by seeking some sort of paternal utopia. The dream is indeed on hold. But I’m not too bereft.

Anyway, we have trains. Our very own father, son pastime.

Isaac would happily live his entire life on a train. At times he’ll go through days and weeks as if permanently on the Jubilee line with a twin recital of pitch perfect engine sounds and station names, and it can be difficult getting him to alight. Except to an ipad for some blasts of YouTube clips of filmed tube journeys.

It’s not too difficult to see why tube trains satisfy the not-very-enquiring mind. Identical length journeys. Predictable destinations. Regularity. For the sensory seeker, they also provide the manna of moving lights, same sounds and perpetual motion; things Isaac replicates when not on a tube train by deftly but ferociously flapping his blue flannel inches from his eyes.

Travelling on and watching tube trains have therefore always featured in Isaac’s life. Starting as some sort of sedative, the only location that would still his troubled soul, they have evolved to be something much more. Because whilst Isaac may not have been ready for my ritual of watching football, I made myself readily available for his ritual of train journeys. 

They have become a fully-fledged, regular joint activity that has facilitated conversation and learning, allowed new experiences to be introduced, offered me a glimmer of his considerable memory (with the side-effect of me glowing with delight). They have also enabled him to be downright, deliriously happy.

Our almost weekly trips around the London Underground have cultivated a cause-and-effect dependency and neatly developed it into a something deeper and more meaningful. Our bond was born on the Bakerloo line and has blossomed throughout the entire London Underground network and its multiple journeys and destinations. It’s highly possible that with every train connection we experience together, we connect more.

Somewhat unsurprisingly, once we accomplished our first 3 hour round trip from Kensal Green, his expectation was to do it identically the next time.  From watching three red trains heading for Elephant and Castle and at least one orange train for Euston, before urgently and enthusiastically boarding the next one. As well as cracking into crackers at Euston, waiting for Harrow and Wealdstone for milk, and then hovering at Kensal Green to witness one last southbound train. The minute detail and order he recalls is fundamental to the experience and fascinating to behold.  And not only do I need to follow him as I invariably forget facts, I must treat it with respect too as he rapidly gets concerned if it wavers in any way.

Of course, this craving of repetition and routine could compromise his learning. Subsequent trips playing out exactly the same with no discoveries or new dialogue between us. But whilst any visit to Kensal Green is pretty much limited to the journey described, there’s nothing to stop us starting at different destinations and stretching his seeming limitless capacity to remember, absorb and repeat back.

We have five or six trips now. Each mutually exclusive from one another.

The gospel at Gospel Oak? “Sandwich with yellow cheese please. Let’s get off and go to Barking, daddy.”

What to do at Dollis Hill? “Quick, quick, we must get on and go to Westminster. I love the Jubilee line daddy.  Daddy, can we cross the train bridge and see the big wheel? ...Lift me up, lift me up! This is such fun!”

Then there’s Brondsbury Park, Golders Green…you get the picture. The scripts for each journey unique, thorough and painstakingly thought through.

There is room to embrace new things. Once he has the solid foundations in place, windows of opportunity for adding a detour to the trip are rare but do exist. This became clear on the amble from Westminster to Waterloo, where passing a café I suggested we could sit in and eat some chocolate buttons. He was open to it, sat down, shared some bread with me and that became a fixed part of that trip. Bringing Isaac to a café, to sit and have a meal is difficult and challenging. On the rehearsed journey from Dollis Hill to Waterloo via Westminster and the train bridge, it’s become a doddle; in fact it absolutely has to happen.

It’s all part of a (self-explanatory) process called bar coding; which is how he processes and recalls events. It sheds more light on his mind, which in turn empowers us.

There is a parallel with the father son football bond just witnessing his wide eyed elation and sharing it with me. I feel he’ll never tire of appearing to discover seeing a "train, train….Daddy, the train for Elephant and Castle is coming. We’re not getting on!" Or observing happenings during the trip with the poise and particularity of, well, a train announcer. "The driver’s speaking. Tell mummy, we heard the driver speaking…let’s tell mummy!" (Of course different drivers speaking at different times could be incendiary. But admirably he’s started to accept minor deviations in his life like this; something I’m extraordinarily impressed by him achieving and my wife for teaching).

Also, the tube map has become our football stickers; pouring over it, recognising points, querying each other about what’s where. An affirmation of his burgeoning photographic memory.

I abhor the autism-for-all, we’re all on the spectrum, school of (lazy) thought. But appreciating his way of thinking has accessed a systemised sense to my cognition that, delightfully, provides quite a substitute to the paraphernalia, information based adoration football allows.

I’m proud of Isaac for his proficiency for what some would deem prosaic but I see as full of purpose. Often on a train he’ll stop me in his tracks with his exhaustive delivery of all the stations, in order, on a whole line. And when one of those stations is Crystal Palace, I do let myself dream - one day, maybe one day. Not for now though. There are trains to catch.

Could Christmas get Isaac’s vote?

I rarely reminisce about Isaac’s pre-school years. In fact, in my more subdued moments I feel robbed of having fond memories, a victim of autism’s indiscriminate nature. Where there are few landmarks to joyously recall; just some shaky ground of part relief, part fear when Isaac’s words trickled then tumbled awkwardly and interaction was intermittent at best.  There are no magical times conjured by a curious crawler and chatty toddler. Comparisons with proud parents as wide eyed as their experimenting offspring sent me into mild torment. They grow up so quickly, people would preach. Cherish it. Really?

Any traces of what could well be warm collections are clouded by what I know now but didn’t then. I shudder at the sheer vulnerability of my family battling with Isaac’s behaviour, blind to what was going on. Holidays and birthday parties in my mind are the stuff of nightmares.

Christmas could so easily fall into this camp; the one before last probably does. When, unlike his peer group, presents were too abstract for any kind of appreciation. Sparkly trees and decorations were invisible or irritating to him. And the XMAS dinner, where sitting with all the extended family, pulling crackers and cracking up at simple and silly word play was as alien to him as the gravy-drenched turkey and trimmings that didn’t pass his lips.

But quite gloriously I have wonderful memories of last Christmas – that stand toe to toe with my maudlin memories of Isaac’s early years. It glows like a diamond in my mind and I am all the more grateful for it.

Christmas 2011 came just shy of a year after diagnosis. A time when the recalibration of our lives was taking shape, if not complete. Crucial to his development and learning was actually our learning. Of him and his mind. And it was this which enabled the Christmas I wasn’t sure we’d ever have. At a time when all the Christmas mores of countdowns and anticipation and present giving still made little sense to him (they do now in an endearingly methodical manner –using them as an information gathering and processing exercise.)

My wife would prove to have the most liberating of revelations at the most relevant of times. Planning for the unknown can be as paralysing for us as experiencing the unknown can be for Isaac. We catastrophise what may happen to such an extent that we end up stuck mentally and stuck indoors.

The elation of being invited to a once-in-a-lifetime Christmas party at Downing Street was swiftly replaced a swirling, spiralling avalanche of anxieties - Isaac not wanting to go in, then not wanting to leave, being in a place seething with protocol, rooms that were strictly no entry, realms of other children roaming, hailing a  taxi in a busy street. Our catastrophising left us on the cusp of not going all together. But we did. My wife had the revelation. We allowed ourselves to not be overwhelmed. To think of how great it could be. How much Isaac’s come on. How we would be denying ourselves and him. How we’d have strategies in place for all eventualities. Maybe what also pushed us in the end was the fact that we were invited as guests of the Special Yoga centre that was soothing and nurturing Isaac so well. Which meant Isaac was invited as he was a child with autism. Not going to ‘number ten’ would have been criminal.

We prepared meticulously of course. Isaac was ‘going to Samantha’s house, which has a black door that says 10, in a black car’. There would be ‘balloons and chocolates and cakes and singing and no bed and no bath’. Father Christmas would be there too, but we didn’t dwell on that – Isaac wasn’t a fan.

It’s a strange sensation, doing something personally historic whilst fretting about Isaac. I only half took in the imposing portraits of Prime Ministers. I breezed through number ten to keep up with Isaac, instead of slowly, deferentially shuffling in. But this day was not about deference, it was a free for all in the best sense of the phrase. A democratic and dreamy event where all the kids could be free and just be.

Isaac loves to scamper around which, despite the grandiose chandeliers and ornate sofas, this slightly creaking, ludicrously vast space practically encouraged. We let him bound around confident that nowhere was ‘out of bounds’ – with no despairing glances from other parents saying Isaac had no boundaries.

The whole party was fantastically autism friendly. Christmas oozed, but only if you seeked it. Bright balloon trees, tinsel, treats were in abundance. Equally there was space, quiet, a floor to lie on, air to breath. A sensitive natural light in side rooms.  There was none of the claustrophobia and sensory intensities of parties that are so punishing for children like Isaac.

In places he’s never been to before, Isaac seeks familiarity. It’s his oxygen for staying serene and composed. Hence the presence of delightful kid-loving adults who he knows so well with their smiley and cuddly personas – from Mr.Tumble, Fireman Sam, to TV presenters - was fortuitous. Samantha Cameron actually played a back seat role, engaging with the children more than the adults. No pomp or greeting.

Many children, with myriad needs, milled about calm but excited. You could practically sense the relief of parents that here, in this monument to law, rules and etiquette, no-one was judging anyone. For parents whose lives must be more exhausting and challenging and upsetting than ours, there was a joy and, perhaps, contentment. 

Isaac wanted to know that Father Christmas was there, but didn’t want to see him. Instead we played games in the side rooms with giant, multi-coloured balloons which he adored -  him letting them float up to the chandeliers; me jumping up to grab them. Chandeliers in peril? Samantha Cameron smiled, willing us to carry on playing. By the end, Isaac defaulted to ‘self-stimulating’ behaviour, running up and down the oak walls, intently staring. His version of downtime. And handled sensitively, our time to take him home. Which he understood would be in ‘another black car’, with the promise of ‘trains on the computer’ when we got home.

And in the black car, as we ventured home through a Christmas lit-up London, our faces lit up with euphoria at a party to remember for ever.

I was on the verge of tears from start to finish at this Christmas party that considered its guests exquisitely. For probably the first time since diagnosis, we genuinely felt that nothing could go wrong. We witnessed Isaac have a little bit of the heady thrill of a kid’s party for the first time.

At the last party we’d braved, I was on the verge of breaking down from start to finish – it was cluttered, chaotic and therefore cataclysmic for me and Isaac. And it’s the fear of those cataclysmic episodes that makes us catastrophise forthcoming events. But our lesson – thanks to my wife’s revelation – was to plan for the unplanned, not be scared of it to the point of inertia. That was liberating.

Equally as liberating is knowing that sometimes it’s ok to not go out. We do a risk assessment; too many imponderables mean we can make an informed choice to stay at home, safe in the knowledge it’s the right thing to do.

The upshot?  Leaving the house, for however tiny a trip, will leave us with the memories we’ve so yearned for and will reminisce about for years to come. Whatever’s round the corner.

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Not knowing which way to turn

What are we doing wrong? It’s a common cry from parents like us about our screaming children. Particularly around the time of diagnosis. A blurry, murky time that seems a world away from where we as a family are now. When computing and comprehending the facts is what I needed to do; but in actual fact I was doing anything but. Getting Isaac to do the simplest of tasks was too taxing for us and too demanding for him. Questioning our parenting skills was the obvious, but ultimately futile, place to look for an answer.

Compounding our parenting crisis at this harrowing junction in our lives were people’s misconceptions that Isaac was misbehaving. Isaac may have been at a hot house of a nursery, but they struggled when he was in a boiling rage. One of these rages was often triggered by something as small as whether he would be starting the day upstairs or in the garden (you’d be told on arrival every day). And so it was on this particular day in early 2011, in the narrow corridors of a neat townhouse, with the steady stream of over achieving three year olds orderly walking in, Isaac collapsed, back arched, yelling, with arms flailing, desperate to let me know he didn’t want to go upstairs. Which was where his class was starting that day.

My hold of him rapidly turned into restraint, especially as he was adding hitting and scratching to his repertoire. Meaning other parents disapproving glances were now not just towards Isaac, and implicitly me, but now explicitly me as well; I can’t control my child, and when I do, I do it forcefully. On this fairly horrific occasion, when Isaac’s tear-fuelled plea to explain his despair didn’t work, he forcefully threw himself at me like a wild wrestler, in the cross fire knocking over a little girl. The stare a mother gave me that day will stay with me forever; a look of confused shock that a little boy could be so repulsive and his father so wretched.

When I eventually managed to calm him and deposit his disorientated little self with his teacher, he commenced laps of the classroom chanting train sounds and seeking stimulation for his eyes. Marginalised from the other children sitting well behaved on the floor. Marooned in his own world of repetitive behaviour; his only way of coping and de-stressing from the hell he’d clearly been through.

I walked out of the nursery. Before, completely out of character, breaking down.

It was days after diagnosis. When, as I’ve said, we were still hesitant of the label, trying to come to terms with our new life, learning a little, scrabbling round in the dark a lot. Yet the nursery (who had no experience of autism) were looking to us to lead the way. As I wiped away my tears, I was jolted into action. I had to confront the tutting parents and reticent nursery staff: Isaac has autism, these transitions, this behaviour, he struggles with it, please understand. Starting with a determined effort to solve this morning problem. How can such a trivial thing like whether he’s upstairs or outside cause so much uproar. Neither I nor Isaac knew which way to turn. But we both needed to find out.  

Serendipitously we had a parents’ session with nurses who specialise with autism that very day.  The first of many with extraordinary professionals who would educate and cajole, strengthening our resolve. Little step by little step. Having wept and then wondered, I was in a heightened state. Searching for sympathy, empathy and answers. I actually got all those, it feeling like a momentous first foray into living with autism. And what illustrates this best, is that I was given a simple, quick solution to the problem that had made me so upset. When the nurse told me it, I wanted to hug him and not let go. He’d found what I’d been blindly seeking for. It was an answer that was like the ABC of autism. A brilliant preface to our own new story that was just beginning.

Isaac needed to know whether he went upstairs in the morning, or in the garden. It was that simple. If we didn’t plan his day for him, he would. And it wasn’t just speech difficulties that meant this structuring, this absolute desire to stave of change would be internalised. Isaac’s default is to forever lay down his own temporal foundations. Piece together his roadmap. His routine. So every morning, Isaac would be formulating his day. With every little episode being set in cognitive stone the minute he conceived it. It perfectly explained why whether he would be going upstairs or in the garden felt like a game of roulette for me – it genuinely was.

Nearly two years down the line, preparation is his and our lifeblood. The pulse that keeps our lives beating to some sort of rhythm. His progress with speech helps, but without consistent commentary from him (about what the day entails) and confirmation from us, things become hopeless.

The nurse’s conclusion was a seminal moment for me. A moment when I understood that sometimes the world has to adapt for autism. The Nursery needed to make allowances and let Isaac always do one or the other. So there was no ambiguity; he’d know where he’d be starting the day. Emboldened, I spoke to the nursery who maybe a little anxiously agreed that we’d tell Isaac he could go outside every day. Which he did, and there was never a highly visible, tortuous breakdown in the glare of other parents again. By taking one unknown from Isaac away, we’d erased the unimpressed and uncomfortable looks of parents for this one very public part of the day. We’d not educated the parents really, just not given them a reason to judge. One step as a time, I felt.

It was ever so small, barely a microcosm of one aspect of autism, but by dealing with it effectively, as parents just starting on this life long, daunting journey, we'd absolutely done the right thing.

Does Isaac need to be flexible for yoga?

In the year before diagnosis, appointments with a plethora of professionals came thick and fast. But any revealing results were slow in coming and thin on the ground. The only real discovery we made was that one of us taking Isaac was better than both. A distraught child can elicit antagonism between the most harmonious of couples. With screaming and scratching focused on whoever was closest, the other parent becomes as helpless as the advice they are trying to give. A negative vortex of emotions ensue.

My wife did the lion’s share of these trips that were always met with a roar of disapproval from Isaac. Each one a nightmare with everything stacked up clumsily against him. His specific traits that we knew little of then were being completely compromised and this contaminated his mood and sensibility severely. His strict, systemised mind had to deal with variable waiting times, confined spaces, no entry zones, toys he wasn’t used to, toys he was, and toys he had to stop playing with. And his intense sensory seeking was bombarded with bright lights, beeping sounds, buttons, flashes, people milling about and more. (All this was probably even more disorientating to him than the actual therapy, blood tests, occasional scans, lights shone in his eyes, and people testing – or simply misreading - him.)

Isaac would surface from these gruelling sessions puffy eyed, exhausted and sad. This disgruntlement with the world left him out of sync and out of action for the rest of the day. The same can be said for my wife, and on the occasions I took him, me too. At least one of us had been spared, knowing that our presence would have made things worse.

My perceived clarity of these events benefits from hindsight of course. Was it that bad? Most probably. Knowing now what I didn’t then makes it all crystal clear. It also provides something very instructive – that the contrast to the visits to professionals where the environments accommodate him as opposed to alienate him is stark.

We still split activities between the two of us, as much for reasons of time efficiency as damage limitation. And Yoga is an activity my wife has been taking Isaac to that he simply adores. Now it was my turn. I would be taking him to this appointment with a professional on my own.

The instructions from my wife were, as always, deep and detailed. Isaac’s daily schedules need to be carried out to the letter - surprises spell disaster more often than not. That much we know. I absorbed the instructions, fully preparing to apply them consciously. But then I had a thought. And it came from the comparable anxiety and dread I used to experience - when I would at some point physically drag this boy into and out of meetings; him screeching, disapproving people everywhere. What’s the polar opposite of deliberately and forcefully having to navigate Isaac around when he least expects it? Letting him lead the way is.

Something he does with mummy, he knows daddy is taking him this week - why not let him apply his exacting daily schedule to this event he so enjoys. Put him in a position of control. I’d be the flexible one for the yoga trip. Ambitious and daring maybe. But, as I say, the contrast to where we were brings things into focus.

From the moment we pulled up at the yoga centre – that I’d never been to before – Isaac started to orchestrate proceedings in his (currently) clipped tones and precise manner. “Daddy, stop the car please! This is Charlotte’s house! We are going to do yoga now. Daddy can you stay outside, please. Isaac kisses knee. Now we are going up in lift. Okay??” His commentary style of speaking means that right now he resembles a 1950s TV football reporter. With a slightly higher voice. There’s a purpose and momentum to all his discourse. “Isaac, where are we going?” I asked, genuinely baffled by the different doors, stairs and alley ways. “This way, please. Through the door, daddy. To Charlotte, OK”, he said skipping adeptly through a door and up some stairs.

Inside this predictably tranquil and composed centre, Isaac ran into the arms of Charlotte. There was a shared happiness and appreciation that something extraordinarily brilliant and fun was about to happen between them. He took his shoes off in a swift way that I’d barely seen, and slotted them neatly in a box in a way I’d never seen. And then together, Charlotte and Isaac skipped into a room and closed the door. The smoothness and speed of everything left me surprised but as serene as the surroundings.

When, pre-diagnosis, Isaac was being examined or having therapy - or whatever –waiting to hear the next scream was heart in the mouth stuff. Conversely, there’s nothing more heart warming than hearing the giggles and elation of your at-peace son emanating from a room where he’s being stimulated, developed and understood.

After twenty minutes, the door opened and Isaac, with a sublime smile, eyes wide, delighted and fixed on mine, sprinted into my arms. We hugged and I held him tightly, overcome. A five year old running into a parents arms may be an everyday occurrence; probably not when the child has autism though. And whilst Isaac is hugely affectionate (with ‘learned’ cuddles the latest addition to his evolving physical language) this run and hug had a more profound feel – and felt amazing. He ran because he was desperate to tell me about what happened and I sensed that gorgeous anticipation, the connection which was so constrained in his early years. I saw it in his eyes. Charlotte read the situation immaculately, teasing out little questions for Isaac to answer and sow together a little narrative from his session: “What did you kiss Isaac?” “I kissed my knee” “What did you say?” “I said Isaac om..” “How do you feel Isaac?” “I feel fantastic!”

Isaac took me to the big, clunky lift (I remembered that going up in the stairs and down in the lift was the routine) and we waved goodbye to Charlotte. Then barely keeping up with him, we went to the car. And as we drove off, I reminded myself of the disgruntled, out of sorts, sad boy of pre-diagnosis, and then looked at this now calm and collected boy. He was content, I imagine, as much from the yoga as from knowing that his specific plans had been executed with the precision he yearns.

But as with all things autism, I made a note to appreciate the moment and not look too far ahead. A trip to the opticians with all its discomfort, unpredictability and need for Isaac to be flexible is on the horizon.

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Welcome. I'm going to Talk about Autism.

This blog will try to be truthful. There will be painful episodes. That are tinged with regret and envy, frustration and the need to forget. Equally posts will talk of promise and potential. My wonder at the workings of my son's brain. The many triumphs that autism brings. The positive tears.

Because what I want to share is the everyday role autism plays in my life. When it takes centre stage, like the end of term school play with all its associated anxieties. Or when the parts played by a supporting cast of family, friends and professionals inspire, impact or irritate.

And as if to demonstrate the non-linear, ever changing nature of autism, I may flit from the current to any time since diagnosis, in January 2011, and back again. Themes may be revisited. In the colourful world of autism, discipline is never black and white, and always something to discuss, evaluate and discuss some more. Likewise learning and language. Not to mention denial. What about what ifs? They exist and will be personally examined for sure.

My first post is about the organisation, Ambitious about Autism, and more specifically their online resource, Talk About Autism, who’ve kindly agreed to promote the blog within their community and beyond:

When I first heard Ambitious about Autism, I thought ‘what an alluring alliteration’. But this was before autism affected me in any way. The advertising agency I’d previously worked at had done the charity’s branding, and I’d always kept an eye out for their work. I liked what I’d seen. Marketing wise.

So when my son, Isaac, was diagnosed in early 2011, and we emerged from the paediatrician’s meeting drained and drowning in a sea of information, that alluring alliteration rose to my mind’s surface and proceeded to be a lifeboat of sorts.

Eighteen months on and my wife and I are fully immersed in the organisation as Parent Patrons. And it’s Talk about Autism (TAA), the vibrant online community within Ambitious about Autism that has perhaps been most critical to helping us come to terms with Isaac’s autism.

In its most basic form, TAA is a forum (ever so gently) moderated by the brilliantly enthusiastic Mike. Where questions are posed and answered, conversations launched and new people nurtured with the help of the community champions. It’s actually a lot more than that. It’s a safe haven from the everyday assault course of discrimination, generalisations, judgements, ignorance and, well, exhaustion and difficulties, that parents of children with autism battle with (to varying degrees) day in, day out.

The sense of isolation that we feel having a son with autism is quite subtle. Friends and families are accepting and alert. But we can’t expect them to appreciate or even understand the intricacies that can be so defining yet, if handled wrongly, debilitating. Rigid routine, peculiar diet and sensory stimulation are on the face of it easy concepts to digest, right? Wrong.

There’s the Isaac who people see as grumpy, bad tempered, and badly behaved – and therefore unable to sit and interact at a birthday party. Then there’s the real Isaac who we know is disorientated because the room looks radically different to when he was last there, over stimulated by bright lights, noise and a plethora of unknown people – and therefore unable to sit and interact at a birthday party.

In the TAA community, everyone knows that we are living the latter; and that reassurance literally gives us strength. It can also give us answers. Pushing scooters the wrong way, flapping flannels, licking, microwave obsessions, repeating words, requesting that I smile many times a day to confirm I’m happy (because in his specific mind, if I’m not smiling I’m not happy), Isaac’s autism changes from month to month. Someone in the community will always be able to explain or empathise or both.

TAA stretches beyond the forum of course. It acts as a diligent and discerning curator of the multitude of autism information online. A measured number of relevant stories are posted that help us to continue our understanding. Only recently Mike posted a piece that articulated succinctly the difficulty people with autism have with discriminating stimuli. How they struggle to ignore what may be irrelevant because they are visually bombarded by lots and lots of stuff all the time.

This helped me understand – and explain - why Isaac might find himself focussing on a book on a crowded bookshelf as opposed to the big and loud children’s entertainer performing in front of the barely noticeable bookshelf (let alone book). It’s his way of making sense of his environment at that point in time.

And one last point to make about TAA, is that it puts people with autism’s well-being at the heart of everything – by enabling healthy debate. People have different views and experiences. Which will happen with this complex, life-long condition. By listening to other’s advice and choosing to agree or disagree, discount or discuss, we are all moving in the right direction towards a better life for the whole autism community.

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