This was going to be a personal Facebook status about mild autism, but it got long. It’s really for my friends but I thought why not write it here and open it up to everybody.
I’m coming up to a year post official autism diagnosis. I’ve spent the last four years going back over almost every moment of my entire life, re-seeing it from an autistic perspective. All the signs were there, you know. The crushing shyness when I was small, the very early reading, the obsessing over specific objects, the having to have certain things. I’ve covered some of this before.
I didn’t rock and bash my head against walls. I didn’t sit in the corner and scream. I didn’t flap my hands. I didn’t have genius mathematic abilities. Is this what ‘severe’ autism looks like in your mind? Maybe. Maybe that’s just what you learned from films about how autism looks. It’s a stereotype.
I could talk. I could look people in the eye (but not when I was being shouted at or being very shy). I could nod and smile in the right places, but occasionally I would completely misunderstand what someone had said and they’d look baffled at my response because I took what they said very literally. I could get jobs, but could I keep them for long? Apart from the occasional slip-up, people only saw what I allowed them to see as I got older.
If I had said I was autistic back then (hell, even now) people might have looked at me and said I must be on the very ‘mild’ end of the spectrum.
However, a spectrum doesn’t have ends. Autism isn’t on a line. It’s more of a circle. I saw a thing once, that explains the round spectrum concept really well, in an easy-read cartoon form.
People who know me offline might say I must only have mild autism because really autistic people have meltdowns. My meltdowns have always been a mostly private affair. If you’ve been super-close with me then you’ve witnessed them, you just didn’t know it.
I can give specific and real examples that certain people who are in my life will recognise, of times I was having a meltdown but neither of us knew it because we knew nothing about autism back then.
I want to come back to this word, ‘mild’ though. What does it even mean? I’ll tell you. It means you can’t see anything ‘wrong’ with me when you look at me. Think about that for a minute. I don’t look like your idea of ‘disabled’. I’m right, aren’t I? And yet it is a disability. From the UK Government website:
- autism – a lifelong developmental disability that affects how a person communicates with and relates to others
Even my own doctor (not the one I have now) didn’t believe I could possibly be autistic. He referred me anyway, so maybe he thought “ah, maybe she just has ‘mild’ aspergers”. Here’s a hint, doc: aspergers is autism is aspergers is autism. You can’t even get diagnosed with aspergers any more (well, I couldn’t, but results may vary by local health authority). It’s all been merged together in the diagnostic manuals.
So you may see me as having a ‘mild’ form of autism. But remember, you’re only seeing what I allow you to see. I may slip-up due to a build-up of overwhelm and confusion and then you might see a chink of autism slipping through. Likely you won’t realise it’s autism and just think I’m a bit ‘odd’. If I’m spending a lot of time at home, then when I’m out I’m mostly able to hide my autistic characteristics until I get home. If I’ve had to spend a lot of time with other people, out and about, doing a lot of different things, with lots of different noises going on at once, I’m more likely to not be able to contain it.
I wouldn’t change who I am, but autism makes life hard. Not just for me, but for the people I’m closest to as well. Most people won’t usually see the difficulties because it’s all going on in my brain and not showing much on the outside. There are upsides, but that’s another post for another day.
I don’t have mild autism.
You experience my autism mildly. There’s a difference.
This post was inspired by Rhi’s ‘Autscriptic‘ post. You should read it; Rhi is a fantastic writer.