I’m going to preface this blog by saying that I am not diagnosed autistic. I haven’t (yet) had a medical professional tell me that it’s true, but like many adults, lots of them women, I have found myself staring at a label that makes everything make sense. Self-diagnosis is still valid. It helps people like me before their formal diagnosis, find support in a world that frankly isn’t built for us.
I’ve been ruminating over writing this blog post for a long time, finding myself somewhat reluctant to share this part of myself even though it’s no bigger a deal than anything else I’ve shared before. Indeed, I’ve written at length about my experiences with mental health, and although Autism is not a mental health condition, it feels as though it’s on a similar wavelength and perhaps even less commonly talked about.
It has been startling to confront my own internalised ableism as I have come to terms with being autistic. At first I thought it was something I shouldn’t talk about, that it simply wasn’t okay to talk about it. I really felt it was something to hide. Then I started pandering to the ableism that I know exists ‘out there’ in the world beyond the blog post. I thought that people would think less of me for admitting this part of me, that people would think I was making it up because how could a woman working full time, with friends and hobbies, living independently, possibly have something as big and scary as Autism?
That is what I’m trying to confront, by talking about my experience of Autism. I’m the generation with thousands of children unvaccinated as babies because of one ‘study’ that terrified new parents into thinking that their precious bundle would suddenly cease to be the baby they loved because of a vaccination turning them autistic – the vision fed to them was most definitely the ‘worst-case scenario horrific nightmare’ for all those new parents who just wanted a perfect baby. And I know that the stigma around Autism is older than that one piece of entirely bogus ‘research’, but it’s a good example of the stark fear around this condition, a fear that to some degree still exists to this day. So let me say it nice and loud, for the people who hold ableist views.
Autistic people aren’t any less than non-autistic people. We just experience things a bit differently to you.
I’ve already been asked by people close to me, why I would bother seeking official diagnosis, as a twenty-something woman with a degree, a job and a flat. It’s not as if doing so is going to open doors of accommodation like it might have done had I been spotted as a child and diagnosed way back then. I agree that having confirmation isn’t strictly necessary for me to function, now that I’ve made it to adulthood.
But it’s not about a diagnosis granting me access to support or additional services. It’s about finally having a reason for feeling like I don’t quite belong, something that’s been a regular feeling for me since childhood. Why didn’t other children like the same things as me? Why did I always hate the noisy canteen at school, so much that I cried and didn’t eat my lunch? Why do I get so intensely absorbed in my interests, while other people look at me with amused curiosity? Why does everyone else have an inbuilt rulebook that makes them know how everything social works, without having to be told?
Let me tell you, the realisation that I am autistic has absolutely rocked my world. And not in the cool way that people in films describe falling in love. More like the ground under my feet has intermittently shaken me off-balance or completely fallen away to form something totally new that I now need to learn to navigate properly. Recognising neurodivergence in your twenties SUCKS – the number of times I’ve suddenly been hit with yet another realisation of “Oh that’s why I used to do that!” or the current most-common “But HOW/WHY did no-one think that wasn’t quite right?”
To be perfectly honest, there is a clear answer to that second question. The widely-known idea of Autism remains static, for the general public and for a number of medical professionals too. When people think of Autism, they think of a boy between five and ten years old, probably non-verbal, possibly very fond of trains. They think of volcanic-eruption meltdowns and no possibility of thriving in mainstream education. But as more and more information emerges, it’s becoming clearer that this mental image isn’t doing anyone any favours. It does a disservice to those who are non-verbal and have high support needs, and completely excludes those with different support needs who may appear to function totally normally in society.
Just because I’m a fairly eloquent speaker when I do speak, doesn’t mean that I find doing so easy. I’m a teacher, a very talky job, so by the end of the day I’m often ready to just be quiet for a while. Not necessarily alone, but quiet – I guess you could say I’m in charging mode for the next day?
Just because I’m in a profession that requires meetings or difficult conversations, definitely doesn’t mean I know how to navigate these. I’m getting better at asking what will be required of me in different situations, but it feels so embarrassing (link back to that feeling of everyone else having their internal rulebook, and my own internalised ableism pouring negativity on my needs!)
Learning that I am autistic does not change who I am, or who you thought I was before you knew. But it means that so much of my inner existence now makes sense, where it didn’t quite before.