There is a certain silence to Autism.
Not in the raging meltdowns my brother will have that wake the neighbourhood at 5 a.m., but in the way the progression of the disability puts glass walls around not only the autistic individual but also the family that journey with the sufferer. Autism is an isolating disability.
Perhaps it is in the unpredictability of the condition or the difficulty to comprehend just what exactly it is, but I see such muted frustration in my parents when they are asked how life with my brother is going – they can only reply with ‘oh, it’s been a difficult week.’ And this euphemistic reaction is the most blatant understatement; instead, they should reply with, ‘well, my son has been swearing like a sailor all of a sudden and needs restraining when he tries to kick in the walls in the middle of the night. And then he heartbreakingly weeps at the difficulty of his life.’
It seems like there is no grid for people’s understanding so my parents smile gritted smiles and tone down the truth. What makes it worse, though, is that their frustration is nothing compared to the internal torment that a person with autism feels daily. To find my brother sobbing in his bedroom because life is so hard makes our own struggle muted; we can’t find words for a feeling he has no words for – it’s just hard and so becomes hard for us to express.
To be honest, it is difficult to understand exactly what Autism’s reality is without living in the storm of it, but I am calling for a desire in people to understand and support.
‘Autism’ has been a bit of a catchphrase in recent years (indeed, someone I know recently stated ‘well, everyone’s Autistic these days’ – suppress rage here). Heightened diagnosis and publicity has encouraged society to acknowledge Autism’s presence in greater depths. There are many educational provisions for smaller children that are outstanding, but we are venturing into seemingly unchartered territory when the children that had pioneered the early intervention movement start to scope the scary terrain that is adulthood. That is where it gets confusing. That is where delayed teenage rebellion and angst mixed with the fear and disorientation of autism gets overwhelming.
There is no straightforward map to this condition. There aren’t really any signposts or predictable behaviours. There is no growing out of it or getting over it.
Every individual has their own struggles and obsessions, fears and rages. What I do know is that there can be an alarming misunderstanding of the Autism Spectrum Disorder and the precious people that struggle with it.
Just this week my mother took my brother to do the grocery shopping. As she shopped he stood out the front talking to himself, rocking his torso to and fro and taking photos on his iPod of the world around him – that’s just his thing at the moment. Mum came out, laden with bags, to be called out to by a P-plater in a red Ute, waiting for his mate in the bottle-o nearby: ‘hey lady!’ Confused, she neared his car, to be told ‘you better be really careful of that bloke over there. He’s stalking you, watching you all the time … he’s taking photos. There’s something wrong with him – he looks really weird!’ My mother, stunned and shaking with rage, went over to his open window and said: ‘that ‘bloke’ is my son. He has autism. There is nothing WRONG with him; he is NOT weird. He has a major disability. You are obviously quite uneducated and completely ignorant to jump to so many wrong conclusions!’ She spent that afternoon torn between the rage and grief that comes from the fact that someone who appears different can easily receive such judgement and intolerance.
So I write this without any particular agenda or campaign. I just want to break the silence that has muted my brother all these years and ask for people to at least attempt to understand the beauty and horror that is living with Autism – the individuals that suffer from it deserve that respect.
Hannah Macauley-Gierhart is a writer, English teacher, new-wife and insatiable tea lover. You can follow her on twitter here.