Edit August 2020: This was my first ever post, before I knew anything about disability activism, the social model of disability and how important it was for all of us to use the term disabled. Originally, where I’ve used ‘deficient’ and ‘something wrong’ etc. I used ‘disability’ and ‘disabled’. I’m changing them now because I know better. And when you know better, you do better.
Hi, I’m Justine, and here’s some stuff that I originally wrote to be a facebook post, realised it was far too bloody long and so made a blog. This may be my only post, this may be the start of many, either way, here’s what I want to say:
Amongst many other things 2017 was the year I discovered that me and my three kids are all on the autistic spectrum – some of us are fully diagnosed, some partially, some yet to begin that process. Telling people about that discovery has elicited a lot of different responses – from people who love and care about us as much as from those that just wanted to chuck their two penn’orth in. Some have told me outright that we’re not autistic as far as they’re concerned, some have told me to be cautious of taking on a label for myself or the children, some have told me not to worry about it because ‘we’re all on the spectrum’. These and various other responses have attempted to somehow dilute and normalise our discovery. What follows isn’t meant as a criticism of those responses, because I know all those people were trying to be helpful and supportive which I appreciate, it’s more meant to try to explain us better, so that people who genuinely want to be supportive can.
You see the problem with all these well-meaning responses is that they come from a very different idea about what it is to be an Autist (which is how we like to refer to ourselves) than the one we, as a family, have. So, it feels important to put out there how we see being members of the Royal Circle of Autism (which is how we refer to it in our house after the 7 year old named it that). So here goes:
Discovering we were autistic made the world make sense, because suddenly it explained both our struggles and what we were great at. Almost more importantly than that though, it meant we understood other people better. You see, if you grow up as an un-diagnosed Autist and everyone treats you as if you’re like everyone else, then you assume everyone else is like you – at least that’s what I did. Now, we as a family know that most people aren’t like us. We know that they have non-autist brains that are wired very differently, and so the world makes a whole lot more sense. We understand why there are things that are obvious to us that some non-autists struggle to make sense of. We understand why some non-autists are really impressed by things we do that look difficult to them but come really easily to us. Discovering we were autistic allowed us to ditch the life strategies and advice that made us feel awful about ourselves because they never worked for the way our brains were wired. It allowed us to explore new strategies that might seem counter-productive to a non-autist brain but work great for us. Discovering our autism has made us more compassionate to ourselves and to others.
What discovering we were Autists didn’t do was make us see ourselves as deficient. We didn’t suddenly think that something was wrong with us
Here’s the best analogy I’ve come up with for this:
For us, calling autism a deficiency is like judging Superman on his abilities in a room with a bit of kryptonite in it. It’s like watching him struggle and saying ‘It’s just a bit of green rock and it’s not affecting anyone else, why is he making such a massive fuss?’ Thankfully, Superman’s good friends know better, they know that if they move the kryptonite or move him away from it, he can fly, he can shoot laser beams from his eyes, he can do things humans could never dream of doing and he can save the whole goddamn world! His good friends don’t keep him in a room with the green rock and try to get him ‘used’ to it. Why not? Because they know that if that’s all they concentrate on then the best they’ll succeed in is suppressing his superpowers – and then you’ve just got a bloke in tights sitting in a room with a green rock, and how does that help anyone?!
There is a lot of Autist kryptonite in this world and there are many autists who can tell you all about their own personal kryptonite (who knows, I might even blog about it), but the thing to remember is that if you’re a non-autist and you can shift that kryptonite for them, if you can help them move away from it, then you will see that Autist achieve marvels like you wouldn’t believe. And god knows this world needs some superheroes right now.
If you’ve read to the end of this thank you. I hope it’s given you an insight into how we in our family define and celebrate our autism. I’m also writing this as a massive thankyou to all those who’ve been my personal kryptonite shifters towards the end of what’s been a really tough year and whose commitment to continue hanging out with us and shifting those green rocks when needed I feel utterly blessed by every day. I think you all know who you are and I genuinely couldn’t do it without you.
Happy New Year everyone. Here’s to flying, laser beams, pants over tights and saving the world in 2018.