By day: mum of an autistic tot. By night: mum of an autistic tot.
As utterly childish as it is for me to say this, I will anyway: whenever I see the blue lightbulb or the puzzle piece – in fact anything at all related to autism awareness, I too want to vom. Yeah, I’m tired and have a sort of poorly Pwd on my hands so, if you’re looking for deep, this is not the blog for you. I was going to add “today” to that last sentence but that’s superfluous here.
Of course, it wasn’t the billionth post about “awareness” that caused the Pwd’s projectile puking. In a way, this episode is something to celebrate. My little love was ill because he totally overloaded his tummy with food. Yes. Food. Actual solid stuff that needs to be chewed and swallowed and can be thoroughly enjoyed and he did too! His tummy capacity isn’t great after years on Peadiasure and he pretty much popped. Does that make me a bad mum to be happy that my boy was sick? Maybe, but I am happy. This is part of my version of acceptance. I now have to accept that I need to regulate more closely what the Pwd eats and when. This is a change to having to accept that letting the Pwd have access to food to pick at and consume on his terms and in his way and any time was more important than set meals. Acceptance evolves. Awareness is static.
Let me illustrate. Our next door neighbour’s cantankerous middle-aged son is well aware that the Pwd is autistic. Remember this?
A few minutes into Pwdin’s laps, just after he’d set up a self-comforting rhythm, came a banging on the boy’s bedroom wall. His rhythm was disturbed as was my son himself. To say he was terrified is no exaggeration. His screaming increased in intensity and he quickened his step, making the laps of his not huge bedroom dizzying and dangerous.
A few minutes later: more banging from next door. Same response from the Pwd.
A few minutes later still: banging at our downstairs windows and front door.
That was two years ago and yet the same thing happened two nights ago. The boy was over tired and upset because mummy was away for the night. A little boy, crying and missing his mummy gets a wall banged at him by an arse hole who is fully aware that this child is Autistic. A small example and very personal, I know. Awareness is passive. How many times have you been “made aware” of a situation without being expected to do a single thing about it? “I’m just making you aware…” does not compel action or a change in behaviour. It does not, in real terms,impact the lives of Autistic people for the better.
It is 2014. It’s time to move beyond awareness yet, the messages put out by Autism $peaks focus solely on the fact that there is such a thing as Autism. It becomes a disembodied menace that threatens to destroy families unless it can be prevented or cured. If Autistics are mentioned at all, the focus is, largely on children and the picture painted as flat as their ubiquitous and offensive puzzle piece. To be fair to the National Autistic Society, the message of their “What is Autism?” video, “accept difference not indifference” is streets ahead of anything put out by A$ but still acceptance is a secondary to awareness. When Autistic people are saying that “awareness” is patronising and even damaging, and a focus on acceptance is needed then such huge charities must respond. I might have shared the NAS video and joined in their thunderclap had it been promoted under the banner of acceptance. My spreading “awareness” would, to me, be a betrayal of the Autistic men and women whom I count as friends. Men and women working so hard for a world where the Pwd will be accepted as a valuable, whole, human being.