I'm Also Done Apologising

07 January 2015
When I was 18 I travelled with a large group of other Australians to Tokyo. I know - lucky kid, huh? What a great way to celebrate adulthood and finishing the HSC. All that culture, electronics, great food - I should have had the time of my life.

I hated it, and I couldn't quite fathom why. I remember getting a subway to Ginza, standing in a six-story electronics department store, and freaking out, tears rolling down my cheeks. It was awful. It was too much. I couldn't cope, and I couldn't understand why everyone else was having such a great time. I assumed everyone found Tokyo, the world, life as overwhelming as I did, but they handled it better; I was just a spoilt brat, weak, wrong.

I didn't know I was different. Oh, well of course I knew. I was always told I was weird, boring, that no one liked me, that my meltdowns were the sign of a bad character, that I was just wrong. No one made allowances or took any of my quirks into consideration; it was all my fault and it needed to be disciplined out of me.

I didn't know that I wasn't, after all, defective. I didn't know what was almost certainly wrong with me had a name - Asperger's Syndrome. I am planning to get a formal diagnosis in the next year, but until then, I've been thinking. And when I read the awesome Carly Findlay's blog post about how she's done apologising for her skin and her cream, I thought I'm going to stop apologising, too. I'm going to stop apologising and just be honest about how autism affects me and how I interact with the world.

There's still so much misunderstanding about Asperger's Syndrome, especially how it affects adults, especially how it affects women. Reactions from people have been mixed, from the well intentioned (suggestions of counselling from people who believed it is a form of mental illness) to the plain horrible (labelling my meltdowns and hand-flapping as crazy). But deep down, I don't think a lot of people take it seriously. Yes, we understand you have Asperger's, but couldn't you just cope with this wedding/shopping trip/moving house if you really wanted to? You know, just hold it together for a few hours? Well, some of us can, but let me tell you it is an enormous effort. I spent the first 25 years of my life trying to "act normal" without even knowing that's what I was doing, and it made me miserable and depressed - from meltdowns at school pick up time in primary school, to drinking to cope with adult parties to try and dull the noise of the sensory overload assaulting my head.

I'm not going to just cope any more.

If I feel the need to refuse a party invitation, I will. If I go I'm not going to apologise for sitting on the sofa by myself for a chunk of time. I'm not going to apologise for my aversion to bright lights, loud noises, for the facial cues I miss. If a stranger touches me without asking, I'll tell them in no uncertain terms that that is not okay. And if colleagues find out that Nico is a great target for jokes that take the piss ("she always believes you!") I'm going to speak up right away, not let it go on for months.

I can pass, pass as normal, which is not an option for many people with disabilities, but I'm tired of having to. It's exhausting and frustrating. And I believe I have a duty not to; I have a duty to speak up, educate, to make life a bit easier for those who come after (having gone through the hellish experience of learning to drive last year - having to spend many hours in a confined space with a stranger who is closely examine you do something unfamiliar that requires co-ordination and spatial awareness, as Aspie's worst nightmare - I do wonder what happens when the kids in the current so-called autism epidemic start learning to drive? Changes needed there certainly, though I'm not sure what).

Anyway, we are not spoiled, or difficult, or crazy (well, some of us do have mental issues, but that is separate to the autism). We have accessibility needs too (one I thought of recently was autism friendly shopping hours at supermarkets, with slightly dimmed lighting and no muzak or announcements) and we need to speak up, politely but firmly, that this is for real and we're not apologising.


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