To most people, Autism is a word. One they’ve heard rarely, most likely on TV – during a news bulletin perhaps – or in a movie.
That’s how it was for me, too, before I received my diagnosis.
Autism was a word that was a synonym for a type of intellectual disability. But, Autistic people had special talents, like the ability to count cards like a computer, or guess how many jelly beans were in a jar (like a…computer 😄) because they were good with numbers. Not just good with numbers – Autistic people were geniuses.
For the record, I don’t like numbers. Never have. In school I did the level of maths affectionately referred to by me and my peers as “veggie”. Yet here I sit: Autistic.
At the time of my diagnosis then, this was everything I knew about Autism: essentially nothing. But then I realised that wasn’t true either.
You see, whether I realised it at the time or not, I was, and always have been, Autistic, and nothing and no one will ever change that.
But because I’ve lived it each and every day, like you may have, that makes me an Autism expert. More than any researcher who’s made it their life’s work, more than any doctor charging hundreds, potentially thousands, of dollars to diagnose it, even more than the bureaucrat who decides your NDIS (or similar) funding fate.
To some of the faceless people of the internet Autism is, I’ve deduced, code for “freak show”. At least it is if the kinds of questions that turn up on Quora are any measure:
- What are some activities for those with Autism?
- Do Autistic people feel emotions?
- Why do Autistic people get lost all the time?
- Do Autistic people like nature?
- Why do Autistic people punch themselves?
I could go on…
The questions these people ask (whether they’re serious or not – sometimes I think they have to be joking) make it seem like they believe Autistic people are barely people at all.
With some on ‘X’ (formerly Twitter), I’m left in no doubt that some believe that we’re not.
While Autism is many things to many different people, it still shares a lot in common with almost every aspect of our largely non-neurodivergent world: some people will look to profit from it, some people who know little about it will judge it, some who say they have its best interests at heart will take advantage of it, while others, typically the most fearful of any perceived “differences”, will abuse those of us born it – Autistic that is.
To me, this quote by Autism Advocate Dr Stephen Shore, which sits in the footer of my website, sums Autism up beautifully: “If you’ve met one person with Autism, you’ve met one person with Autism.”
[I should note here that I believe in ‘identity first language’ as I explain in the How the language you use shows respect section of this article – but I’m not at liberty to alter Dr Shore’s quote.]
What the quote means is that Autism isn’t a single quantifiable thing that looks the same in every Autistic person – that in fact it differs between Autistic people depending on who you’re talking to.
I love this because it illuminates the uniqueness inherent in each Autistic person – a uniqueness that’s also found in each non-autistic person.
And it’s this difference that’s in each of us, that if we stop and think about, actually means every single one of us is closer than we realise to every other person on the planet, too.
This story forms part of a series of blog posts written to coincide with the first year anniversary of my Autism diagnosis, each highlighting a key ‘takeaway’ from that first 12 months. I hope you enjoy reading them.
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I overheard someone at my local farmers market spewing all Mi SS of BS about what causes autism, and was talking about how when his kids were babies “I was seeing the autism everywhere and I was determined to do everything I could to prevent it to happening to my kids so I did my research…”. And if I didn’t go mute when talking to strangers I would have politely asked him what it is about me that is so terrible he was determined to do everything he could to prevent someone like me from existing. Because the crap he was spewing to any and all who would listen (and he was talking so loudly you couldn’t NOT at least hear what he was saying) was ignorant and hurtful. And statistically, I was not the only autistic person within earshot. I want to learn how to not go selectively mute with strangers. Or carry around more notebooks and paper so I can counter stuff like that when it happens.
Unfortunately, fear is a mighty strong motivator and ignition starter for ignorance. It’s also impossible to open the eyes of some people. I’ll be writing about exactly this sort of shortsightedness in one of the upcoming pieces I’m writing in recognition of what I’ve learnt about Autism in the 12 months since my diagnosis.
I think sometimes going mute to the sort of rhetoric you write about here, Sara, is a good thing. You wouldn’t convince this fella of anything beyond what was in his head anyway, and might have come away feeling even worse (if that’s possible). I hear you though – it is incredibly frustrating, invalidating, hurtful, and damaging. And a lot of other things, too!