Autism and thinking differently

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

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


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


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

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


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


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


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


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


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


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


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


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


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


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


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


 



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


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


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


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


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


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


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


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


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


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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.

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