Today is ‘World Autism Awareness Day’. Awareness, what even is that?
Light it up blue? A gimmick. A fad. A highly offensive act to the majority of the actually autistic community due to affiliations with an organisation who are perceived to be preoccupied with curing autism and with highly contentious ABA therapies.
Go red instead? Rainbow infinity sign over puzzle piece? The design and use of these came from autistic people so surely we need to support this self expression. So many potential faux pas to be made, so little awareness of what kind of awareness is actually needed. While we are at it, forget awareness, many autistic voices cry, give us acceptance instead. Its a fair request guys.
My son will soon turn seven. He loves Moana and he loves to bounce. He struggles to express himself and he struggles with sensory overload and this can cause him to hurt himself and others, he doesn’t mean to do this. Its a byproduct of him having a really tough time in those moments.
His autism diagnosis was given at age three. We have been on this road for some time now. I’ve made some faux pas, I’ve learned from them. I’ve wallowed in self pity for how it affects me, I’ve vented and then I’ve got my act together and shifted focus back to where it should be. Back to how I can help my son thrive in a world that wasn’t built for him. I spend every day of my life working on this and I will do until my dying day. I’m not an ‘autism mum’ or an ‘autism warrior’. Just a mum of two, one of whom is autistic. Just a mum doing my best.
Awareness. You can’t not be aware of my Grayson. For a pre verbal child he is noise, noise and more noise. Squeals of delight, echolailic phrases, stims galore. And this is all when he is happy. When he is not happy, not being aware of him is even more impossible.
So awareness is not quite the one. Acceptance for sure is needed, but even more than that, education. Ask questions, there are no wrong questions for me when somebody is taking an interest in learning more about my son. Ask those questions and listen. Talk to him, talk to him even though he won’t talk back. He is listening, he is taking it all in.
The staff member on the school gate at my daughter’s mainstream school (where Grayson comes along to drop her each morning before we go on to his special needs school) speaks to him every morning. She greets him with a big smile and says ‘Good morning Grayson’. She knows he won’t answer back but still she sees him there in his wheelchair, she knows that his presence deserves recognition, deserves that big smile.
Learn from autistic voices wherever possible. Grayson communicates primarily with behaviours and leading right now. I’m still learning from him, I’m spotting patterns in triggers. Some day I hope he can communicate fully and functionally with me, and I don’t care if that’s never verbal as long as there is a vehicle for him to communicate with his loved ones. In the meantime we can learn so much from autistic adults who have been where he is and who are willing to turn their childhood trauma into life lessons for others so that children like the children they once were can be happier.
Learn with your children. They are his peers whilst at the same time being far from his peers. I need them. I need your children to know that he doesn’t understand the way they do.
I read a piece earlier this week that talked about scenarios like a school shooting, a fire, and how the writer’s child wouldn’t know to get down, to hide. They wouldn’t know to escape. As I read these words it chilled me to the bone. Grayson wouldn’t know. The opposite would be true. He would seek out the noise, he’d be drawn to the colourful flames.
He would need people to be aware, aware of him, aware of his vulnerabilities and to help him. I would need your children to please, please help my son. His Dad and I, we won’t always be here.
Awareness is so much more than a day to plaster your social media pages with a bit of virtue signalling. Please be aware, be accepting and please keep learning.
Beautiful Caterpillar 