5 November 2017

Marvellous Monday - Talking without words: Communication and Autism

Kieran Rose Bio

A lifelong campaigner for Autistic rights, Kieran Rose has turned his passion for writing to good use, focusing on Advocacy and Acceptance for Autistic and Neurodiverse people, with his blog www.theautisticadvocate.com

The freedom for Autistic people to speak for themselves and be heard is paramount for Kieran, mostly due to the fact that he has spent his whole life immersed in Autistic life and culture with Autism diagnoses for himself, much of his family growing up and now two Autistic children of his own.  

Kieran lives in Durham, England, with his wife, Michelle, where they run their Marketing Consultancy: www.custardandbear.com (With a little help from their three children, Quinn, Albie and Olivia). The whole family all live in a happy bubble of routine, Sensory overwhelm and underwhelm.

When Jodie asked me to write an article on Communication and what, growing up, would have helped me, I kind of gulped. If you’ve read my Blog, you’ll notice I talk in the abstract often and include very little detail about myself. That, I think is related to the trauma and abuse I received as a child. Most of it was unintentional, some of it was done with love, but all of it is relatable to the experiences of Autistic kids all over the world and throughout history. We are not understood, so therefore Allistics (Non-Autistics), think it’s acceptable to try to mould us into what they would deem as ‘normal’ children and don’t realise that it’s unacceptable to do this and even harmful.

So writing about this stuff is an extremely difficult thing to do, which is why I’ve avoided it.

So, thanks a bunch Jodie! (Oopsie)

Seriously, thank you though, you’ve kind of unwittingly pushed me into writing stuff I need to write about and I think others need to read:

From the age of around 4 or 5, I remember dragging a chair from my bedroom, across the landing and standing on it, looking out the window onto the street below.

The house I lived in was on a row of houses called a crescent but it was more like a giant oval roundabout with houses on the inside and houses on the outside. It was a safe place to play, like a mini estate, with only the people who lived their driving round the one way system. So, as you can imagine, there were a lot of kids playing on it. There were bikes and skateboards strewn everywhere, cricket, tennis, football matches, giant games of tag, hopscotch, skipping ropes. A car entered the crescent and everything got picked up and dumped on the verge, then brought straight back into the road once the car had passed.

All weathers these kids were out there, jumping in the giant puddles in the Spring rains, running around in shorts when the sun blazed. And all weathers I watched them. Stood on my chair and studied the ebbs and flows of groups of children that ran and ran and that looked like flocks of birds, or a school of fish, the unspoken unanimous movement as they gathered their things out of the path of an oncoming car and then flooded back out in to the road when it rolled on.

I ached for them to knock for me, to lure me into this bedazzling world of movement and noise I watched unfolding before me every day and, they often did. I would watch them walk onto our drive and my heart would start to pound and hammer in my chest, my hands would involuntarily curl into tight fists, my fingertips, with nails bitten to the quick, pressed hard into my sweaty palms and I would sink onto the chair, knees up, as small as possible.  

I’d hear the knock on the door, the noise reverberating, echoing around inside my head. My thoughts frozen in that cavernous space so usually filled with rumbling gears and constant considerations and memory, allowing the knock to bounce around getting louder and louder until it matched the thumping of my heart and two became one, a physical BANG, BANG, BANG.

My Mum would answer the door, there’d be a muttering that I’d be unable to understand and make sense of over the noise, the constant drumming and then she’d appear at the foot of the stairs, looking up at me huddled tight on this chair, rocking ever so slightly.  

The same line every time, rote and repetition “Do you want to go out and play?”

Crying “YES, YES, YES!” with the roar of a crowd inside my skull, I’d give a barely perceptible shake of my head. She’d look disappointed and vanish. More mutterings and the door would close. The child would return to its dance through the streets and I would uncurl slowly, slide from the chair and disappear into my room. Shell-shocked, exhausted and broken hearted.

This was me at the age of 6, 7, 8, 9, onwards and onwards. I wanted to play with them. I was desperate to play with them, but doing so hurt. I tried to join in the games at school and got lost amidst unspoken rules or rules that made no sense, were illogical and mindless, that changed minute by minute and everyone seemed to know how and why and me? There was I, lost in a sea of explosive noise and blurring movement, my brain, usually charging a hundred miles an hour, slowed to a crawl, with no ability to react. 

The only thing that got me through was my ability to run. I was fast. Tag mad sense, Tag I could deal with. You ran and ran and ran, you chased and caught or were caught. But then the one who didn’t want to be caught, who claimed repeatedly that you missed them, vehemently and adamantly. But you didn’t, you touched them! You tried to explain but they took his side. 

The unjustness. The unfairness.

Football made sense. You ran with the ball, kicked it and scored. But then the ball didn’t cross the line, or you were fouled because you were too fast to tackle but nobody else saw it. 

The unjustness. The unfairness.

So… Easier to stay apart, to watch and idle, to shut out the noise and focus on the patterns in the leaves as they move in the breeze, or find a ‘quiet’ corner and lose yourself in your own head, a world of softness and warmth, where It’s safe and you can do what you want. This was Primary school. Then there was Senior School.  

A huge hulking mass of a building with a thousand rooms and tight corridors where every 55 minutes two thousand pupils exploded out into them, in an eruption of screams and shouts and pushing and barging and touching.  
A place where if you weren’t part of one group, or another, if you didn’t quite fit, you were ostracised, called out, cornered and picked on.

A place where people talk at a thousand miles an hour, where you’re expected to keep up and learn and understanding, except there is nobody teaching you, nobody explains, so all you can do is watch and try to copy. You get it wrong, you pay for it, you go back and watch again. This is how you learn to be normal, this is how you learn to fit in.

“Observe. Mimic. Fail. Punishment. Repeat.”

A constant, unspoken, subconscious mantra in your mind, protecting itself at all costs and forcing this transition,
This act.
This mask…

That’s what it really is, you’re becoming an actor, you slip on a mask. Your stims, your movements become conscious things, you control them. Your intrusive constant thoughts and process, you compartmentalise them and focus on what is going on. You hold your script in your mind, of what to say and do, how to respond, what is acceptable and what is not and you force yourself to do this, 24 hours a day and, eventually, you aren’t you anymore. Instead, you’re this constantly exhausted shadow, hiding in the light, you to everyone else, but inwardly screaming and crying because the lights, the noise, the sensations, the touches, the movement; it’s too much, it’s all too much and then the mask slips, a little bit of you peeps through the crack and someone sees, someone notices a physical movement, or you say something inappropriate, or you start to withdraw and isolate yourself. People see who you are and don’t like it, because its different, its alien to them.

This communication stuff is a bitch. Far easier to just say what you mean, and talk about nothing if there is nothing to talk about. Far easier to hide from a society that isn’t for us and blatantly doesn’t want us. A society which expects us to be something or someone we are not. Far easier to hide from a world that doesn’t recognise our talents, but only sees our weakness. And calls it a weakness only because it’s different to what it is used to.

What would have helped me?  

Honestly, part of me wants to say to be left the hell alone. But that isn’t useful. What would have helped would have been someone sitting down with me, explaining things to me, giving me real working examples, stepping into games with me and modelling, allowing me to shadow. Explaining that other people communicate in a silent way through their bodies and that I just can’t see it, so it’s ok to say that and be honest about it and to expect understanding in return. Telling me that it’s ok to be overwhelmed, its ok to have to retreat into my shell, but also someone to tell the other kids that and the parents and society at large.  

I needed someone to say, it’s ok to be me. 

I read a quote the other day which went something like:

“The difference between Autism Awareness and Autism Acceptance is that: Awareness is acknowledging something’s existence and Acceptance is giving a shit about it.”

I’m sure, everyone reading this blog is one of those people. I’m sure all of you are people who don’t take on a mantle of how hard your life is because of your Autistic child, but think how hard life is FOR you Autistic child, because accepting your child’s differences put you in a position to make life easier for your child. This is when you become innovative and personalise the way you communicate with them so it meets their needs. Then this personalisation is absorbed and put back out by the child. You help them find their path by listening to them, their needs.

You don’t need to cure them or replace their behaviours, you need to accept that some things need to be done differently, then your child will give you what you need.

You’re already halfway there: You avoid the shops because they’re busy and loud. But your kid can’t go through life without ever going to the shops. So you visit them when they are shut and stand outside, so they know how they look. You walk past the shops when they are busy so your child gets used to the movement and can glance in to see the colours. You give them ear defenders or headphones to cut out the noise. You give them their favourite stim toys for comfort. You introduce them slowly. The same with everything you do with them.  

All of this, what most Neurotypicals do not realise, is communication, just in a different language. You’re talking to your child without moving your lips, modelling the fact that you are looking for a way to make them comfortable and give them a little control. This is communication an Autistic child understands. It is simple and clear:  

You are safe. They are safe. This is safe.

That is a fantastic base upon which to build.

From youth to adult we are given mixed messages by society. We are told that differences are something to be celebrated and then we go to war over religion. That different is good and then we are sat in identical classrooms in identical clothing, taught identical things and punished when we don’t fit inside that box. That everybody should be different because the world would be a boring place otherwise. Then we mock people who dress strangely to us, or dye their hair or stick rings through their noses.

Society doesn’t want us to be different. Society is built to progress and someone who doesn’t fit into a narrow range of what provides progress is unproductive, therefore defective, therefore wrong. Autism is unproductive, Autism inhibits progression. Autism forces society to stop and think and communicate in a different way, which slows things down. Autism is defective. Autism is wrong.

Except it isn’t.  

Different isn’t wrong, different is what society fears and what society fears drives it and us forward. Different has raised us from picking at berries while hanging in a tree to a race of creatures taking their first steps into space. Different is what makes Humanity so amazing.

Communication is the driver behind that success and a difference in communication is one of the major barriers between the Autistic and Neurotypical worlds.  

It’s about time that the bridge between those worlds isn’t built on forcing one to be like the other, but accepting the differences and working on how to connect the two.

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