What’s so special about autism?

Well … this is a big blank screen to fill.

I’ve asked myself a question, so now I need to answer it.

It’s a question that gets asked in hundreds of ways in hundreds of situations (both actually “asked” and, maybe more often, clearly hinted at – you don’t have to “ask” something to ask it) to I guess pretty much any of us who dares to discuss autism, especially from a personal/identity perspective.

  • “So how does it affect you?”
  • “You don’t seem autistic – how would I know?”
  • “So, if you had to explain to an alien who visited the planet what autism is, how would you answer?”
  • “It just sounds like mental health to me”
  • “Isn’t it over-diagnosed these days? Aren’t we all really a bit odd?”
  • “But aren’t we all a bit disabled by society?”

One of my favourite “off the cuff” responses (that I think I got from Zaffy Simone), is that it’s being a Mac Operating System in a Windows world (as in, our brains are running different computer software that overlaps very closely with that of the majority, but just isn’t quite the same in some respects – and works differently some of the time).

And this fits with what some of the research says about autism – the neurological differences (larger amygdala, fewer connections with the prefrontal cortex, increased plasticity with age – the opposite of the typical population), and the range of genetic differences (which is where I “fit”).

And these differences mean that we get grouped together, and categorised under the heading of “Autism Spectrum Disorder”.

This all sounds really straight-forward … except, of course, that it’s not.

Because (notwithstanding the heterogeneity in terms of presentation of that diagnostic categorisation) there’s a difference between describing a diagnostic category, and forming one’s social identity. And if we try to achieve the latter by way of the former, we run into problems.

One of the problems, I think, is that if people are interested in my identity, and in how I live my life as an autistic (Aspie), they want to know about the effects of my “condition” on my everyday life. What is it that I do/don’t do/can do/can’t do? What’s “the thing?”

But of course, it’s not that straightforward – because in terms of “behaviour” or “everyday life” or “experience”, there’s not a single thing that I might do, not do or not be able to do, that at least some other person in the world (who isn’t autistic) might do, or struggle to do to at least some extent – in some ways, and in some circumstances.

Autism isn’t behaviour.

And it isn’t consistent – what I can do today may bear no resemblance to what I could do yesterday, or what I can do tomorrow. My “different neurotype” – or “Mac Operating System” is in a really complex relationship with the (social) world around it, meaning that sometimes I can be so flipping “normal” that I even surprise myself – but then on another occasion (in seemingly the same circumstances), I might find myself completely unable to function – totally unable to speak, shaking, crying (I hate leaky eyes), tapping, flapping, rocking, spinning, absolutely locked down inside myself. Looking “autistic” and feeling intensely exposed, vulnerable and embarrassed. That’s not fun.

Most of my life of course hovers somewhere along a continuum between those two states. And (obviously) this is quite similar for most people – and some people will come closer to my experiences than others.

But autism isn’t behaviour.

So people think they get a piece of it. People think they get to own a little of it. “Aren’t we all a little bit autistic?” Anything I say becomes “Oh, but I do that too” or “Well yes, that’s hard for lots of people. It’ll get easier as you grow up.” Or “ If you try doing this … If you try a bit harder…” And we go to such lengths to try to “prove ourselves”, we strip ourselves bare in front of others in the name of “awareness” or “advocacy” or “education” – but the words are never enough.

And of course, all of the bad things that happen to us – all of the abuse, the assaults, the violence, the lethal “cures”, the stigma, the stereotypes, the discrimination, the prejudice, the undermining, the being taken advantage of, the being blamed, the self-doubt, the feeling like no one wants you and you just don’t belong anywhere – that all happens to other people too (in various ways, and for various reasons). The world screws up autistics, but it screws up other people too.

Autism isn’t behaviour – and it’s also not social experience.

So what is autism?

It’s all of the above, and a whole lot more. It’s all the behaviours and the coping, or not coping, but in random, unpredictable and “inappropriate”ways that can’t be explained.  It’s all of the hurts and the horribleness – because of who we are – and who we are is autistic. That is what it is. It isn’t a behaviour – it’s not something you’ll ever see and identify and think – “that’s what autism is – autism and nothing else”. It’s living in an alien land.

You’ll never “get it” by watching sensory simulation videos. You’ll never “get it” by reading about it. You’ll probably never “get it” by talking to us. Sometimes there just aren’t the words. And everything can be explained away anyway. It’s visibly invisible.

And that hurts – because not being understood hurts. Not feeling like one thing nor the other hurts. Not feeling like your feelings are “proper” hurts. Not feeling like a “proper” version of anything hurts. Not feeling like a proper person hurts.

Sometimes I feel like I just want to pretend it doesn’t exist. Like if it’s so difficult to describe, maybe it’s not really anything after all. Maybe I could just be “normal” if I forced myself, if I tried harder. I can “pass” a lot of the time after all. Maybe that’d be easier overall (to be honest, I’ve tried it too – it didn’t work). And maybe if it looks so “little”, I have no right to make a fuss anyway – other people have proper problems (I really worry about that last one – except, I don’t see my speaking out about autism as being just about me – and lots of autistics definitely, undoubtedly, indisputably DO have very, very proper problems).

But maybe I could be a quieter autistic.

I don’t think I can do that though. It’s not in my nature. And besides, it’s too risky for when I personally can’t cope, and it’s a betrayal of the verbal privilege that I have, that many autistics do not.

So I’ll probably carry on looking for new ways to “speak out” (that do tend, mostly, to be more “cheerful” in real life!) – not because I think that people will ever “get it”, but because visibility is an end in itself, and because visibility matters. Just maybe requires more backbone.


7 thoughts on “What’s so special about autism?

  1. Autism is indefinable because it is an existential experience of life comprising uncountable facets encountered and those yet to be experienced.

    And for each of us it is individual.

    I’ve noticed that on the very rare occasions I’ve met up with other self-acknowledged autistics ( used generically i.e. including aspies as in my DX ), maybe I could say Neurodivergent people, that there are times when YES! ( a truly magical moment of shared existential experience) happens and we agree on, or express commonality of existential experience in relation to particular aspects of existing in a NT dominant world.

    Possibly being too heavy and serious here but this is how I see it and my passion is to understand further.

    Liked by 1 person

  2. I guess an answer for non-autistics asking such questions could be
    ” get on a plane to somewhere you know nothing about except that the spoken and written language is completely unknown to you, as are the customs, style of living, eating etc and tell me what that felt like “.

    Liked by 2 people

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