“Tabitha doesn’t have autism, so what does she have?”

“Tabitha doesn’t have autism, so what does she have?” observed Isaac recently from nowhere.

It was an example of him instantly speaking what was crossing his complex mind, on the way to a probably more fact, repetition and anxiety based, frontier – like tile patterns on the Victoria line, or his barely discernible lunchbox permutations for the next fortnight (cheese gratings and cream cheese in a bagel differ significantly from sliced cheese and cream cheese in a bagel).

I didn’t respond because I had no answer. And I knew that any mumbled attempt would have been bludgeoned for its blurriness:

“Adults are so annoying, speaking in half sentences. I won’t listen. It’s enough. The end. Goodbye!”

It did briefly leave me in an Isaac-induced stare out of the window bewilderment. Like a solitary kid playing hide and seek, it was futile finding an immediate and singular reason for his, in the main, rhetorical, statement.

A grasp of his autism? Sympathy for Tabitha that she wasn’t autistic? Awareness of their difference?

What I did conclude initially, was that this was another one of his lateral yet literal takes on the world. That gorgeous blend of pragmatism, unpredictability and wit. Like his recent frustration with a “Siri” misunderstanding – “this stupid Mr Google is not listening properly. Now let me make a suggestion, get Siri hearing aids like Papa has. It’s the only way. It. Must. Happen!”

Saying this from a raised plank of retrospectivity though, I realise Isaac talking about having autism and Tabitha not, triggered something deep in me which was a ponder about the labelling debate. One which I’ve always felt comfortable in the “ayes to the right”.

Gone are the early days after diagnosis when my psychology degree turned up like an unwanted old acquaintance, panicking with talk of Piaget’s seven stages of development and Chomsky’s language acquisition device; but it did tug again here, especially as labelling theory was something of specialism; whether the presence of labels provides a positive or swerves into societal stigma.

Which means more than an examination of the binary nature of labels – to hold onto or be wary of. But also a study of the vocabulary of “having autism” versus “autistic”, as well as use of additional descriptors like “high functioning”. When nuance is needed or is it never? I say sometimes it definitely helps.

We are also in a period when the autistic spectrum, designed to be an elastic label, has a definite tension surrounding how and by whom it’s used. Among autistic people, parents or professionals, consensus is increasingly rare, social media poking embers.

With adults being diagnosed late in life, underdiagnosis of females, people’s desires to disclose being pushed and pulled by privacy and perceived prejudice, it’s become too heated a place for me to contribute and comment. Plus, the neurodiversity collective queries labels at all sometimes (ADHD and dyspraxia sit confidently and collaboratively under the umbrella), favouring themes around movement, difference and creativity, even evolution, over disorder or disability.

I sympathise with all the complexities, safe in the knowledge that I possess a personal, simpler grasp of the semantics:

Isaac has a medical diagnosis of autism. I know that, he knows that, Tabitha knows that. It’s a label that has laid pathways to intervention, formed comprehension and compassion in family members, provided the coordinates for our discovery of his exemplary schooling.

In fact, his comment has actually landed me in an unexpected world of labelling that’s being somewhat pioneered by Isaac. What he said was, with hindsight, part of a loose collection of consciousness he’s sharing that (even when I go easy on the grandiose) could be transformative in outlook. Beyond autism even. It’s just taken the untangling of a knit comb.

Isaac’s ecosystem includes a broad communication that’s an aggregation of learnt phrases, heartfelt formalities, raw – difficult to express – emotion, codes, comedy, eccentricities, and so much honesty. It’s an always on, unfurling in real time, unfiltered and unabashed view of the world. Which is woven into a see all, hear all, feel all (“the clickety click of my laces distract me while I talk”) sense of being, stubbornly anchored more than aided by a photographic memory and love of routine and repetition and the exact:

“Yes, yes, you said about 5.30 we will leave, I am trying to learn this about word, but it’s hard for my body. It’s now 5.31 and we are still not leaving our house, this is difficult for me,” he’ll say – articulate and explanatory ; is that enough for him to flex and behave more agreeably or do we still a need to construct so much of our behaviour around his autism? The latter is in the lead.

All this, weighed down by dyspraxia, his off centre of gravity balance, where calm environments can appear to him like rubble strewn building sites, where the smallest dogs are the biggest wolves and one fly is a swarm.

And yet, as his therapy and education laden toolbox help sew together this ecosystem of his, this shambolic self-regulating system, a simplicity thread is evident and emergent. One that is a torch bearer of kindness, enlightenment and non-judgement for us all. He might not fully grasp it yet, but he could.

It’s a bright and unifying thread that is taking on the form of a burgeoning understanding of his own autism and others’ descriptions of theirs, and builds on tangibles and therefore is too cramped for prejudices. His friends who have autism do because one “does not eat may foods, he hates the colours,” or another, “hates loud noises”. Isaac himself, loves “the speech and language therapy that is what my autism allows me” but hates “queues” has “fun facts and has special powers” but “struggles with this world”.

(Our process of squeezing apart pre-pubescence and autism has begun with embryonic earnest.)

As he ladders up relevant facts, we are testament to his simple and honest vision – that’s a glue for his ecosystem. This genesis of learning can only go one way:

Just as when he uses labels because they are facts that give meaning, sometimes he just has facts, and a label is not needed. On the contrary. He has met someone with two dads, they live together, one called pa, the other dad. That’s that then. Fact. His friends Richard and Bradley are married and love each other. Fact. They are two men who love each other just like mummy and daddy are a man and a woman who love each other. Labels are clearly dangling here and they may help, but in their straightforwardness quite possibly not. He knows a girl who is becoming a boy. These truths he nestles in that larger-than life of his I’ve described; importantly, he demarcates between facts and labels, both being genuine foundations of that glue, that unifying thread.

Because where he is fascinating and fearless is race. Shades of colours have never fitted well with him, his skin is “a little bit pink”, no one clearly is a distinct colour; it’s a conversation tough to initiate, though the negatives and how to be a cog in a courteous world gains clarity at school.

Isaac will compare people unexpectedly, an item of clothing, a pair of glasses, a pronounced single feature. How he visually logs people mean a contrast could happen weeks, month, years apart. A new train guard may resemble an old relative because of a very particular expression, texture of hair, tone of speech. Like a single – uncannily accurate – facial recognition system. He won’t go for the ‘whole is the sum of its parts’ to bracket a creed or colour; that’s a zero sum game for him. Never have I heard him bracket people by skin colour because never have they been identical in his mind. He knows the negative connotation and that’s compartmentalised for him and somewhere he won’t go.

Having just read the wildly expansive “Black, listed” by Jeffrey Boyake, I am educated about all the terminology that so often comes through a white prism and is therefore so loaded with negatives and other-ness. He talks of the “monster narrative” in which even the only suitable descriptor of “black” “degenerates as much as defines”. Isaac’s view chimes with Boyake’s oft muse that “melanin heavy” or simple shades of skin are the only unloaded and true differences in race, but our world is warped by prejudice, discrimination, history, generalisation and more.

Isaac’s external and internal world has this simple thread that doesn’t remain warped. Never was this clearer when his proud teachers described Isaac reprimanding a student he didn’t know at a joint schools’ event for referring to a “black woman”.

“Calling someone a black woman is racist,” Isaac said.

“I’m not racist,” came the irritated reply.

“I didn’t say, you’re racist,” continued Isaac, “I announced that what you said was racist!”

And there we have it. To label someone simply by the colour of their skin Isaac has learnt is inappropriate. What’s more, and what delights me, is he sees it as absurd. Learning about cultures and people and history, will be a foghorn of facts that matter and may help a legitimate use of labels, like the way he has begun to use autism. So of course, categorisation is crucial at some point. We’re not there yet.

What I feel confident about is that Isaac will tend towards the right side of the tug of war between “other” and “difference”. Difference constitutes positive solids that can be labels to be celebrated, generalisations possess vagueness or facts and descriptors without meaning that can be clubbed together for no other reason than to denote “otherness”.

Which brings me to my eventual answer for Isaac that he didn’t actually require, hence the complete rhetorical nature of that question. Tabitha doesn’t have autism. But she does have glasses and blond hair and a wobbly tooth.

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Author: matt.davis@redbrickroad.com

Matt Davis on Twitter
Matt Davis
Parent Patron with @elizamishcon of @AmbitiousAutism. Co-owner of ad agency, @TheRedBrickRd. Fan of CPFC. Views are my own. Check out my autism blog:

mysonisaac.blogspot.co.uk
Matt Davis

Matt Davis

Parent Patron with @elizamishcon of @AmbitiousAutism. Co-owner of ad agency, @TheRedBrickRd. Fan of CPFC. Views are my own. Check out my autism blog: mysonisaac.blogspot.co.uk

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