Will I feel comfortable with Isaac being aware of this blog as and when he acquires the ability to?
The question (nuanced rather than in unreconstructed form) has therefore acted as a gentle leaver on the moral compass if you like. Not that it was needed at all in his early days. Chronicling them demanded a frank, exposing honesty such was our raggedness – with raging against society’s stares going hand in hand with amplifying autism’s awareness a matter of Isaac’s human rights. Intensity informed everything and I felt compelled to communicate all we learned. I wouldn’t change a smidgen.
As he approaches nine however, the question devolves from what I singularly (as a father) say about him to something more pluralistic. Maybe not a question, more a constant consideration that whatever I say needs a degree of respect and parity with his own opinions, profile and personality. How, if at all, will he feel, be aware of, love, hate, tolerate, tame, embrace, enforce, his autism. It’s his journey, my part must, as much as possible, be curated by – at least be in conjunction with – him.
“Willy Wonka’s got autism.”
Such is our real time – forever on and forever fruitful – relationship with school, they are always alert to little aberrations like this. Isaac probably didn’t have a knowledge of autism, some boys in his class may have. There was certainly no Charlie and the Chocolate Factory revelatory autism story though. A semblance of self-awareness was seeping into him. A healthy, in hand, observable occurrence that always happened to boys at Isaac’s school.
So much so that on the occasions I pick him up, I find myself in a jubilant state – flushed with the endorphins of expanded expectations; his jolly, sociable, developing self being clear to see. In fact the narrative right now is Isaac is nowhere near his glass ceiling and deserving of lofty ambitions.
Isaac is often in possession of a one rail-track mind. To stem it is to leave him ferociously frustrated, unfairly so. Equally, as championed by school, to dwell on the obsessions, means they fester, he gets entrapped in them.
He’s taken to – “as a way to relax after school, daddy, I need to write about transport” – typing the entire tube map completely from memory; effortlessly, at break neck speed. All the stops, their intersections listed, in perfect order; of all the lines; north, south, east and westbound. It’s a preposterous skill really. Mindboggling in its depth and dimensions. His photographic memory transposing the visual into perfect verbal form.
So how to harness this passion that can be on the precipice of pointlessness?
In this case, success has been achieved by introducing some social skills. His octogenarian grandfather, Papa Paul, is an enthusiastic, kindly man, whose interests and generosity are varied. One of which, trains of all shapes and sizes and vintage, is something I, in a previous less informed, less responsible life, gently ribbed him about. Now I strongly reinforce it, aware as I am its vital purpose as a social tool.
This marshalling of an obsession into something positive and social, is one of many small but significant steps Isaac is making. Repetition is different from routine. He’ll always thrive from and need routine. So a regular collection from school incentivised with train stimulation is a wholly positive development.
Reward of friendship is wayward with Isaac – the innate skills of reading body language are invisible, regulating himself from cavorting, physical play is a fierce challenge, reciprocation is not part of his natural make-up. Perhaps all this goes hand in hand with the esoteric concept of social currency; something so yearned for in typical children, appearing of limited value to his self-confidence. Yet we do have some foundations in place that could start to paint the broad brushstrokes of potential. Music, he loves; cataloguing and remembering in the main. Any playlist on popular radio he knows in full, “this song we’ve heard already, sometimes you hear things more than once,” I hear a lot on a long journey, DJs’ propensities to play songs over and over, a lack of imagination irritating Isaac slightly. His knowledge, I know, could stand him in prime social pecking order, in time, “this is Hair by Little Mix featuring Sean Paul – I’ve seen it on music television and am listening now to Capital Radio Extra.”
Just being a minor part of the conversation about autism – with Isaac implicit naturally – feels current. In a world where adults with autism are becoming advocates, employers are being encouraged and the Lancet talks of neurodiversity, the public consciousness is rightly being prized open by a previously marginalised autism world. Equally, awareness remains too low, rights are abused, integration can be pitiful, appropriate education denied. A degree of postcode lottery and council inconsistencies mean Isaac has the fortune of a deserved education. It’s devastating to think of the swathes of children with autism who sit inappropriately in a mainstream, unfocused world. For that alone, speaking openly, loudly, disruptively, about autism and Isaac feels crucial.
Dearest Matty… Another chapter in your log of Isaac’s struggles and achievements is out there. With so many good reasons you praise his remarkable school and highlight the unfairness of the inconsistency in local provision, but, as usual, you underplay (and not just in your public utterances!) your and Eliza’s consistent, strong guidance through the enormously challenging labyrinth that is Isaac’s autism.We know first-hand of the exhaustion, frustration and worry for the future, yet increasingly (and often magnificently) we get a glimpse of Isaac’s extraordinary – and developing – qualities and abilities.Today Isaac, through your hand and voice, lit up the page as never before. For him – and for so many others – keep talking. ‘Crucial’!
Aug 24, 2016 6:45pm
— Mumsnet Blog Network (@MumsnetBloggers) July 14, 2016
— Parker Howard (@ParkerHoward) July 14, 2016
@copyiswritten Your blogs give so much. Understanding. Hope. And wonder. Perhaps Isaac might want to give too through your blogs.
— Kay Hutt (@BHALush) July 14, 2016
@copyiswritten an erudite blog like this can only enhance public understanding which can only help our children. I know it's helped my wider
— Mike Strong (@mikeystrong) July 14, 2016
Always worth reading! A dad's perspective. https://t.co/VRVO8utZDg
— Manar Matusiak (@ManarMatusiak) July 14, 2016
— AmbitiousAboutAutism (@AmbitiousAutism) July 15, 2016
Enjoyed this on the moral dilemma of documenting his son's autism. "Speaking openly about Isaac feels crucial." https://t.co/c1MkK9e2tL
— Tom Madders (@TomMadders) July 18, 2016
The latest from Matty, father of Isaac..why he will always speak out about Isaac's autism…he is a remarkable boy https://t.co/sGjfMFSP6q
— Jon Snow (@jonsnowC4) August 20, 2016
@jonsnowC4 Brilliantly written, his blog encapsulates everything we go through with out 8 year old son Jasper.
— Mike Hall (@photograph247) August 20, 2016
@jonsnowC4 that's a moving story. Thanks for sharing
— Babirye (@Sebmae) August 20, 2016
@jonsnowc4 my grandson is autistic (or artistic as I put it) and so much of this rings true. Love him to bits, but boy can he tire me out 👍
— Andrew Brown (@A_Suffolk_Lad) August 20, 2016
@jonsnowC4 Well done Mr Snow,you are a 'patrician' legend.What's that Dan Snow all about though?????
— Lawrence Crosbie (@LawrenceCrosbie) August 20, 2016
— Matt Davis (@copyiswritten) August 21, 2016
— rainbowsR2beautiful (@rainbowsaretoo) August 22, 2016