Why fit in when you were born to stand out?
This will be a series of traits and attitudes we are forced to change to conform to societal standards .
One of the big tells of Autism is hand, head gestures and body movements.
Christos likes to shake his arms in the air a lot, quite forcibly and he makes this laughing but not laughing sort of sound. When we are in big open spaces he’ll run like the wind. When we were in supermarkets, when we were in Disneyland, generally in places where he feels comfortable. He does this when he is happy, sometimes it’s more flamboyant than others. He does this when he is content. He does this when he is expecting something he enjoys. Every time though, one of us will try and sooth him and ask him to stop; despite the fact that it doesn’t bother us, despite the fact that he doesn’t need soothing.
He’ll stretch out his fingers in front of his eye and wiggle them while shaking his head. Usually he does this when he is agitated, he’ll start doing it more intensely the madder he gets and let out this frustrated moan. He also used to do this thing where he put his mouth on his antecubital, the front of his elbow, and squeeze. Another sign of him maybe getting agitated or trying to calm down is when he makes his hand into a fist and blows into it through the corner of this mouth. Every time he does these things one of us will ask him to stop; despite the fact that it’s okay to be upset, despite the fact that we are annoyed a lot of the time.
When he is listening to music, at home or in the car, he will shake his head back and forth and side to side. That’s how he likes to dance to his favourite music, he also sings, moans and laughs. Every now and then he’ll stop and say our name though, in a way that seeks our approval of him doing this; despite the fact that we haven’t asked him to stop.
His sensors being on overload all the time means that a simple touch will trigger some kind of reaction, a change in the tone of our voice is detected immediately. So when we touch him, for a hug or a kiss, its usually followed by him grabbing our hand and asking us to touch him again at the exact same spot, with the exact same direction, with the exact same pressure; as you can imagine this can take as long as 20 minutes. So, when he’s annoyed and one of us, or a stranger, touches him he needs to do the same thing. Christos isn’t shy about asking a stranger or a waiter to touch him again the way they did and didn’t even notice. If it was a passing stroke he will grab their arm and replay the movement. So we interfere and ask him to stop; despite the fact that the touch was probably painful or annoying for Christos at a level we cannot comprehend, despite the fact that that’s who he is, despite knowing that we can’t judge him by our standards.
Why? Because for some reason we want everyone else around him to feel comfortable. But why? Why limit Christos to make others comfortable when all the others do is stare, point and shield their children? As if that boy is trying to hurt someone? Why is my brother not afforded the same respect that we, as a family, struggle to afford to others?
Because the false ideal of being ‘normal’ actually means being prejudiced. It means compromising to the point where anything ‘different’ is something worth staring at. It means that pretending to be a uniform society is overshadowing uniqueness, individuality. It means that generation after generation is taught that being ‘normal’ is better than being yourself.
We have always treated Christos as a brother, a son, a grandson. He was never an autistic boy unless there came a point where we had taken off his socks and put them back on 15 times; or when it was 1am and he was still ‘Ow’-ing at me; or when the touching thing was getting a bit violent. In fact, we always used to make light of it. I would mimic his sounds, his movements; not to make fun of him, just out of curiosity. So when his mumbling would get a bit loud I’d copy it, and it felt good to let out the frustration. When he angrily squeezed his face I would copy it, and it let out a lot of the frustration as well as feeling oddly comforting. I copied him when he was trying to calm down and blew air into his fist, it kind of made me focus on one feeling and it would also tickle a bit which would change my mood. I tried to get in his head and understand why he does each thing. He, like any of us, needs to let off steam, he needs to be angry, comforted, and express his happiness. He never liked it when I copied him, he would ask me to stop, and I always wondered if it was because we did the same to him. I hate that I am trying to limit him and his expression, it just happens subconsciously. I like to tell myself that I do it for him, so that he stays close and doesn’t get lost. I like to tell myself that I do it so that he doesn’t get into trouble with some ignorant passer-by. But then I catch myself doing it when it’s just us, when it’s just family that knows him. You try and swim against the flow, you try to let them be who they are but the realisation that you do, inadvertently, try and conform them is painful.
So I am going home in a week and there will be no conforming, no restricting, no telling him to stop unless I have to. I hope you stop staring, I hope you learn about Autism, I hope you understand that they are not dangerous. I hope that one day we will live in a community that doesn’t judge, and I hope this time that we live in and the things we do will inspire others, communication, education, love and compassion.
I hope you shake your arms and see how good it feels.