The autism journey is anything but straightforward, perhaps the sole certainty being a succession of learning curves lurking at every juncture. The ones that kicked off concurrently from diagnosis we’ve conquered competently. Like a basic understanding of the traits, and a persuasive narrative for friends, family, and teachers at the time. Whether they’d been previously disturbed by his development (or lack of it) or in denial about it, or indeed, both.
Other learning curves linger longer and there’s no correct way to climb them. Like how to campaign for awareness appropriately; a political and sensitive issue, with something bordering on a consensus to acknowledge. Similarly, the (ironically complex) curve of dealing positively with the very unlearned concept of prejudice and its many forms is a tough one. Multiple, mini mountains of misinformation abound.
But, for me, attempting to understand autism’s effect on learning itself – and specifically Isaac’s – is the one learning curve that dominates, overriding most others. Informing and instructing them. A learning curve we’re lumped with for life it would seem. It’s resilient and recurring. Stubborn, steep and something we slip down, just when we think we’ve mastered it.
Isaac’s learning abilities are riddled with contradictions. He has a fascinating facility to absorb information, process it and repeat it back. That seems to be multiplying by the day. His latest skill being a walking-talking calendar describing the dates and days ahead in substantial, miniscule detail. Delivered earnestly by rote with formal verbal flourishes like ‘hmm, that will be a very good idea’ and ‘now, daddy, please listen, on October 4 you’ll collect me from school with Daddy’s phone in your pocket. Please say yes’.
Idiosyncrasies are arising of course, like his incredulity at inconsistencies, impossible to explain, such as the number of days in the month: ‘but 31 has to happen’ was his opening gambit on October 1. And any event in the past whether 10 minutes ago or 10 months previously has to be referred to as ‘yesterday’. That I’m going to give him a bath on December 25, after Father Christmas has been, is not so much pencilled in as tattooed into his mind.
The benefits of his brain’s linear and logical leaps of learning are felt enormously for my family. With our collective abilities to successfully plan and keep to a routine now comprehensive. Without a doubt day to day living is calmer and more joyful as a result.
Yet other, more opaque areas of his learning appear to not be keeping up. He can count rapidly to way beyond 100 in groups of 3s, 5, 7s, but unless he’s literally and visually learnt the simplest of sums, he will struggle to answer them. Similarly he can read and read back pieces of text, thanks to his vast visual memory. Phonics are his strength so his sight reading is improving. But he cannot write or create words. And plots of stories however simple seems to pass him by.
Inquiry and imagination are in their infancy. As is improvisation in dialogue. Responses are phrases learnt – sometimes charmingly jumbled. Anything demanding coordination and motor skills from riding a bike, to tying shoelaces, to handwriting, are beyond his ability and interest. However when it comes to naming things like tube trains, their lines, and being able to recognise them, he’s a scholar.
I can only compare him to a hardworking, functional computer whose operating system is about words, numbers and storage. Vast amounts of it. Its capacity for inputting and processing data considerable. But lateral, abstract, hard-to-pin down human dissection and discussion not apparent features. Indeed, try to programme intuition and sociability, and his operating system slows to a halt.
Complicating things further is his unpredictable propensity to apply himself. Head first, focused, obsessive if he wants to, and the environment is sensitive to his sensory inconsistencies, enabling him to utilise his visceral desire to document and memorise. (Making films on an iPhone of him watching trains or in fact doing anything mundane and then watching back many, many times is his current passion. And is the most effective incentive when we want him to so something – anything!)
But equally he can be distracted and perhaps perceived as disobedient, if he’s not 100% absorbed in the task at hand. Extremes.
So the strands of learning that align in most minds and as a result everyday life caters for, is simply not his experience. He doesn’t have a collage of cognition in the way typical children do.
And it’s within the landscape of a muddied education system that these inconsistencies of his learning will be most severely tested. School is the lightning rod for a child’s immediate, long term and wider development, his potential, his place in the world. A balanced and responsive-to-his-needs learning environment will create a smooth a path to what we yearn for him. However, I’m aware how challenging that can be, his brain wired so differently to a typical child. My greatest fear is he doesn’t receive the extra support and care he needs if he’s at a mainstream school; or that wider learning and sociability may evade him at a specialist school. And either could leave him stranded in an education hinterland.
I abandoned dreams of him cutting a swathe through school a while ago (should I have though?). It doesn’t mean he should be cut adrift in an education system that can’t deal with the vagaries of autism.
The truth is, at this exact moment in time, as he begins Year 1, I am grateful that Isaac is receiving an appropriate education in a mainstream school that is adapted around him as much as it can possibly be – when you take into account 25 classmates, none on the spectrum. I appreciate I have barely dipped my toe into the rough, unpredictable waters of an education system that so many parents are drowning in unfairly. This is my personal experience and it could all change tomorrow, literally. I know that.
Based in Brent, where Isaac was diagnosed, professionals have mobilised around my little boy with a verve and industry that I rarely experience. Accessing these professionals, a high and daunting hurdle through no fault of themselves, was a mission singlehandedly fought by my wife. And once achieved, critical interventions like speech therapy pretty much saved Isaac and transformed him. The Brent Outreach Autism Team (BOAT), is a battalion for parents like us, its purpose representing children with autism in the mainstream education system. Lobbying for them, getting the right teachers, training them, getting support, linking with the school. Always on the end of a phone, the slightest autism unfriendly event can be reported to them and acted on with alacrity.
The yield of this is Isaac is a contented pupil at a school well versed in autism and special educational needs (SEN). An enthusiastic, accepting yet firm approach means he is pushed but not too hard. His 26 hours designated extra support from a Teaching Assistant (TA) is always at hand but autonomy for Isaac is advised wherever possible. His teacher is confident with him, with his own strategy for what Isaac can and can’t do, one not swayed by potentially over concerned parents. Indeed little bits of independence like walking without us into class have been put in place, successfully and without distress. Our anxieties in the main have been assuaged.
It’s a critical year, of course. With this age group on the cusp of major numeracy and literacy sophistication. His teacher has faith in Isaac and I must. He’s holding a pen and ‘squiggling’ which I wasn’t confident would happen. Despite him clearly being behind his age group in these areas, he is having support in them and developing.
His professorial speech and memory are acutely autistic though. One of Isaac’s outreach workers, Jemma, whose championing of Isaac is unswerving and inspiring, observed something intriguing about how his methods defy mainstream ways of learning. She explained that there is a conventional wisdom that links handwriting with how most kids learn to read – whereby making the shapes of the letters liberates words off the page so to speak. However, she noticed that this is not the case with Isaac. He can read – not just competently but well above average for his age group – yet can barely use a pen, let alone write a word. Perhaps this is due to a mixture of taught phonics and his own self-taught marvellous mind at play.
An ambivalence towards teaching methods creeps in, rightly or wrongly. Does his autism demand alternative approaches? Is he missing things that are being taught and are the school missing things that he’s picking up? (However, teaching at his school does benefit him broadly, giving him opportunities for reading, numbers, behavioural cues – that’s for sure.)
So I have reservations. A raft of them.
Occupational Therapy is something he’s (physically) crying out for. Traces of it are hazy. Would an intensive, continual course of this complement his main learning? Actually, is this an area that must be incorporated into his curriculum, a permanent feature and even support worker?
Having one on one support in the form of a TA is vital. Especially at lunch, when he can attempt to eat in a small group away from noise and disruption. But the TA is of course not a trained autism specialist. Would that make a difference? Play too his strengths more? Or could it hold him back if he’s kept too cosseted?
In a specialist school, where they understand the autistic brain supremely, may they be better placed to furnish his mind with skills better suited for him? Make more use of his obsessional approach. Or is this fanciful?
At school, they are having a modicum of success weaning Isaac off his repetitive behaviour – rapidly waving his hand in front of his face, making train noises. This is a behaviour he needs and it relaxes him. Would another school embrace it and tolerate it more. Is there an answer? Probably not.
Hugely helpfully, the issue of Isaac’s learning has recently been best summed up by the head of Isaac’s school. Only the parents of a child with autism know exactly what’s right or wrong for their child. If they are lucky enough to have choices they are the only ones to make them. What we must do, he advised us, is try to avoid a time when we have no choices. When we must make a ‘distress’ purchase and leave a school because it’s unbearable, with nowhere to go. And with that he advised us to always seek out different learning environments, schools to his own, so we’re prepared. Which is what we do, keeping us just ahead of the learning curve.