What's normal?

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

Often, on close inspection, when there is a mysterious onset of distress, discomfort, defiance or aggressive avoidance that can so baffle us, so weary us, it can actually be attributed to autism. Albeit in its most extreme and fascinating form. Like when he witnesses a barely noticeable change to a thing or things that we haven’t accounted for or think we can dodge.
For example, he has close to a hundred small video clips he’s made on an iphone of his train trips. Handing him the phone, his after school treat he’d spent the day fantasizing about, I realised I may have deleted or discarded one. But it was too late to reason with him as he swiped and mentally scanned the swoosh of barely distinguishable mini-still images of clips in one fell swoop of his skinny finger. Noticing in a split second one wasn’t there. Cue tears, frustration and collapse. Kicking with rage. A demonstration, not particularly appreciated by us at the time, of his extraordinary visual, photographic memory – particular to autism of course. An eye for this type of detail is practically incomprehensible to me.

Talking of his visual capabilities, any tampering with his visual mind map (which connects him to the world) places his world out of kilter - eliciting rash behaviour that can appear mysterious without a forensic done on its causes. (He sees the world the way an unfocused camera does, taking it all in, painting a picture in his mind, so everyone and everything he sees for a second time or more is in context; it’s one of the reasons he yearns repetition and feels safe and sound with it).
So when a rushing tube train was missing a tiny yellow sticker warning of objects being trapped in between doors – something I had been blissfully unaware in all my decades travelling the tube - on a stationery train let alone a moving one – he was uncontrollable with sadness and insecurity. Now, he’s learnt to put a positive spin on anomalies like this, becoming uncontrollable with glee and giggles, when he sees it ‘Look, daddy! No sticker! Train’s got no sticker!!’ Progress.

Equally, he can appear summoned by strange - invisible to me – similarities, like the time he became agitated at dinner because there was ‘a monster, with big starey eyes’. Things settled when we realised two innocent bagels and a bread knife sitting in close proximity to one another, were the culprits.
The triggers therefore for what can appear mysterious behaviour can be located in a semblance of logic. But only with exhaustive analysis. And often, when he throws himself into a prolonged bout of stimming (self-stimulating behaviour) of train sounds, flapping hands, seeking reflections and sensory fulfilment, one can but be mesmerised by his whole, daunting world. Autism is a sensory processing disorder, and often the chaos and colours of our world simply bamboozle him. He needs to retreat and reboot for whatever reason he cannot articulate. In his time, in his way. “Don’t talk to me, daddy. I’m a little bit busy” will be his delivery to us, in earnest.

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

It would be dishonest however of me to make the same claims. To talk endearingly and exclusively about the magic of Isaac’s autism would be a sleight of hand. I would be deceiving myself. The truth being that in the early days, if I could have waved a wand and made ‘the magic of autism’ go away, I may have done.
Too much pain has occurred, too much worry lies ahead for such sentiment. Too much pining for little pleasures like play dates, parties, and knock about care free fun that I’m too feeble to supress successfully; the consolation that he’s content to miss out, tepid comfort at best. Too many experiences where we just can't brook the dam-breaking tears. Too much time selfishly feeling stultified by the shackles of routine, the hours spent on trains (a treat for Isaac, at times a tedium chamber for me) weekends at home spend wondering, What if?

No, autism, for me, is about reality, not magic.
Our obsessing of Tabitha, Isaac’s sister, lands a heavy blow to any beautifying of autism anyway. At six months old, assessing any signs of the condition is perhaps futile. Still, we struggle to not put an autism filter over every tiny thing she does or doesn’t do. Eye contact, eating, initiating gestures. Poring over pictures of Isaac at the same age, looking for clues, doing detective work like some sort of a crank doctor. It’s driven by an oppressive fear that if not tamed, could override everything we do, feel or think. So far, so controlled. But when I can’t halt my darker trains of thought of imagined missed developmental cues and subsequent similarities with Isaac, I hurtle to a precipice.

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

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

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

But then, the talk teetered on pushing Isaac that little bit harder, challenging that little bit more. I can’t stress the goodwill, application and drive of his teacher and the school in general. But my sensitivities arose, my ‘normalising’ autism antennae were on high alert. Isaac was coping in the playground on his own better; less and quieter stimming, was seen as a major positive.
Underneath this steely resolve Isaac was showing, is there, however, a fragility that ferments until set free at home? After school he has become tremendously trying. Mysterious bouts of negativity ooze from him, desperately hanging on to the minutiae of routine, hoarding his magazines, eating even less than normal. His lunchbox often remains untouched despite his now ‘integration’ into the dinner hall. The noise he may be managing, but to the detriment of his diet. These are the fine details of autism not everyone grasps.

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

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

The antidote to this was the next day and a visit to one of a very few schools specifically for kids with high functioning autism and Asperger’s – kids like Isaac.
As we were shown around by one of those people whose affinity with autism is astounding, I struggled to stem the tears of hope. Expressive and reacting to the teaching, full of questions, these pupils’ autism was being handled exquisitely as they were able to break free when need be, talk in their own way, receive occupational therapy; at all times they were cajoled by professionals correctly and compassionately.

Highly, highly emotional, I could see they were happy, focused, cared for and celebrated. In fact, I could actually see Isaac in them. This was something I hadn’t experienced before. Usually, when I’m peering in from the periphery at family functions, disconnected from the dads-and-lads larks and japes, the boys I witness seem a different species to Isaac at times, so made-for-the-world they are, so conventionally developed with their dialogue.
In short, when I entered the school I felt like I’d discovered an autism-friendly, safe and very special whole world of learning and love. Normalising, the pressure to conform had no place. Yet life skills and the curriculum were at the core. Somewhere full of potential, free from the burden of fitting in.
Isaac has a lifelong condition that, for all its peculiarities - some predictable, some mysterious - means he will always be different to a degree. My job is not to smooth out those differences, however hard they frustrate me and him. Isaac is an effervescent boy – to crudely normalise him to fit into our world, would be to flatten that sparkle in him. And that would be unforgiveable.

21 comments:

  1. So so beautiful

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  2. I'm bipolar, so I sympathise completely with the father's desire not to allow Isaac to be 'normalised'.

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    1. Interesting to hear that the 'normalise' debate is relevant to other conditions. Thanks for sharing, Matt

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  3. My son was lucky to go to a mainstream primary school where they worked very very hard to include him and to ensure that pupils in the school understood some of the challenges of Aspergers. Despite that he struggled increasingly as he went though the school and elected to withdraw from the class for the majority of the time. He now goes to a specialist secondary school (residential) where all the children are on the spectrum. Now his difficulties are 'normal' and his humour and personality can shine. I will never forget the first visit to his school, the world of opportunity and experience that suddenly opened where there had only been challenges. He still has autism and other complex needs, but that is not the thing that all the people around him see. The difference has been astonishing. I hope you & your son are as lucky.

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    1. Hearing this is uplifting in the extreme. I take great heart from your story. Thanks for sharing. Matt

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  4. The 'normalising' conundrum is such an important issue in this age of equality and diversity. In our well intentioned appraoch of inclusivity we can so easily forget that equality does not mean seeking to 'do the same' for all children but should be about offering an equality of understanding and support, in relation to what a child really needs. We also seem intent upon defining what it is to develop 'normally' to such a degree that we risk excluding more and more children and definitely NOT offering an equality of understanding and support. Using the square peg and the round hole analogy, if the round hole was larger, the square peg (and all the other shapes!) could fit through it. And we'd have a truly diverse community, benefitting us all.

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    1. 'An equality of understanding and support'...how brilliantly put. Thank you for such insight and for reading the blog.
      Matt

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  5. My autie takes hundreds of images of still life on his ipad, I did write about it on my blog this year. Like you, we also were looking anxiously for any "special needs" signs when our younger son was born, I must say this anxiety spoiled a lot of things, instead of enjoying his babyhood I was always on the lookout for anything that might be interpreted as autism.
    Thank you for your beautiful and emotional post.

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    1. It's a pleasure. Always comforting to hear people's similar experiences. Will look out for your blog.

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  6. I'm constantly torn between the desire for the world to adapt to my son Jonah, aged 8 and diagnosed with moderate Asperger's, and for Jonah to fit into it. I feel, while it can be frustrating for him at time, pulled towards the latter because I just don't think the world's going to adapt quick enough to always meet his needs, for all he's lucky to be born into a word where people with ASD have greater understanding and opportunities than ever before.To educate him about the potential effects of his condition has become the clearest route to help him, if not adapt, then to understand why he doesn't always view the world the same way as everyone else.

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    1. Such a positive to hold on to - that, as you say, 'people with ASD have greater understanding and opportunities than ever before'. Thanks for reading the blog and your comments. Matt

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  7. If I had any skills in writing, I might have captured something similar. Thank you for this. It speaks to me (us) loudly and clearly. I look forward to reading more.

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    1. That's very kind of you. So glad it speaks to you. I blog every month or two.
      Matt

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  8. Thanks, Liv! Love to all. Matty

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  9. Again intensely insightful without falling into the self-pitying sentimentality in which I would inevitably find myself wallowing confronted with such circumstances. A genuine exploration of the torturous and tedious at times paradoxes, many parents of autistic kids must feel, torn by the desire for 'normality' and the love of awe you must feel for your children of which autism is a core strand/s of their identity - good and bad. The more I read these blogs, Matty, the more I think a more expansive book on the subject from you could be ground-breaking for parents of autistic children and those not familiar with the condition. No gush - you have a gift - use it - this blog is part of it, but I sincerely think you need a bigger platform and the world needs to read what you have to say. In my book, that's the definition of when it's time to write a book. Do it, mate - it's important for you and...fug it, our society as a whole. Much love, Ben.

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    1. Ben, bless you. Am inspired by your words. Mx

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  10. I can empathize with you and have a 12 year old son who has gone from mainstream primary school to a wonderful special school. Unfortunately my son is very unhappy with the children he is surrounded by and longs for the comfort of his "normal mainstream" friends and school environment. High functioning autism gives the opportunity to learn "normality" but also hinders the need to "fit in" to social groups. As a parent the question of doing the right thing seems to be the only consistency that other parents can relate to. I get a great sense of relief when I read or hear from other parents like yourself who have such a familiar story. Thank you for sharing your story.

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    1. Your experiences highlight the dilemma so vividly. You say you get a sense of relief hearing my story - it's reciprocated. I hope your son finds contentment - and you too. Matt

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  11. Hey Matt,

    Another stunning , insightful piece of writing which makes me feel like I'm shoulder to shoulder with you in my experiences as a Dad of a beautiful autistic boy. You capture the wild uncapturables of autism with such clarity, humour and heartache ( and with not a smudge of self pity or sentimentality). Thanks again buddy , Matt

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    1. Thanks very much for this. I'm delighted to be shoulder to shoulder with you too, living these experiences as a father. Send me a message/tweet whenever you want to share stuff, or just chat. Matt

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