Content Warning – Discusses some childhood traumas, dysmorphic disorder, bullying and mental health consequences of trauma.
Earlier today I tweeted this article from the Neuroclast website. It questions whether autism is, in fact, a social development issue at all and explains the theory of autism actually being a “sensory-movement” issue, where our neurology interprets and responds differently to any number of stimuli, not just the socially motivated ones, and that this is how the misunderstandings arise.
This makes a lot of sense to me, for a number of reasons.
Firstly, whenever the majority of researchers try to explain anything to do with autism from a behavioural or social perspective, they fall woefully short of describing the realities of the autistic experience. They pathologise, infantilise, disorder and other us. It’s demoralising and dehumanising but it’s also based on a lot of assumption and guess work. In fact, during my degree so far I’ve been surprised at just how much guess work there is out there, being used in policy and resource creation for people who they clearly don’t understand! But that’s a different issue for a different day.
The thing that struck me on a personal level about this theory is that it explains the deficits between the behaviourist model and the actual experience of living as an autistic person. Drawing on executive function issues, stimming, echolalia and more, it takes you through the nervous system and explain the chemical and neurological aspects and how they manifest in real life situations.
All my life people have hated me. I don’t pretend that I didn’t sometimes do something to deserve it, I can be rather obnoxious, but the majority of the time, I was despised before I ever had the opportunity to do anything to instigate it! I can walk into a room full of complete strangers who can’t possibly have any pre-assumptions or knowledge of me and before I speak or even make eye contact, they despise me and they do so in such a way that I can physically feel it! I get called a liar or an exaggerator over this a lot but I think some of you out there will know it’s neither. You’ve experienced it too.
I tried so hard to make that different, first by trying to be as unassuming as possible… Or as unassuming as it was possible for such a young child to be… And then I tried to control the narrative. This was the method that sticks with me, even now. If people are going to stare at me, I give them something to stare about. I’m loud, I’m the clown, I’m the witty banter girl who draws attention with humour and self-deprecating wit! … Because showing humility and debasing myself like that publicly makes people hate me less. They either shrug me off as an attention seeker who isn’t worth paying attention to or they see through it all completely and see an extremely insecure person… Well… That was the plan anyway… And in some small cases it did work. For the majority of cases though, I just made myself an even bigger target… I gave them something to blame their despise of me on and then expanded on it, making my life miserable and getting me to blame myself for it. I was too loud, it was my fault. I was an attention seeker, it was my fault. I was mouthy, I deserved it. I didn’t know my place, I got what was coming to me. I was a pathological liar, I needed a smack.
Even now, as an adult who tries my hardest to reign those impulses in, I still get this immature, school yard bully, behaviour levelled at me. No matter how demure, self effacing, quiet or charming I am… And believe me, after years of working with armed forces veterans, I know how to be charming… They still hate me.
I get accused of being aggressive, no matter how calm and laid back I’m deliberately being.
I get excluded, insulted, spoken over, attacked and any number of really demoralising and socially humiliating things.
The explanation I got when I was younger was that it was my face. I can’t tell you the amount of times someone or other took it upon themselves to break it because they were sick of “being forced to look” at my ugly, disgusting, gross, pathetic or whatever awful word they looked up in the thesaurus first, face… I now have rather crippling dysmorphic disorder… There is one mirror in my whole house and it took me years to agree to that single mirror. I rarely take pictures of my face and it’s a source of great upset and anxiety when I do or when other people do it to me… But I’ve been guilted and attacked into letting people take photos of me too, no matter what my discomfort because, as one professional photographer said to me when trying to emotionally blackmail me into buying photos, my children deserve to have photos of me when I’m gone, instead of me being missing from all family photos. That really stuck with me. The idea that I was hurting my children through my inability to let go of years of brainwashing. It made me feel weak and a bad parent. So now I smile and I don’t look. I don’t want to see my face in photos… I don’t want to literally vomit and have to stop myself from clawing my face off (which I have tried to do in the past, I have the scars to prove it… Another thing I was accused of lying about by so called mental health professionals when I was literally screaming for help)… Because all of this is an overreaction for attention, right? I’m just making it up to make others feel bad or whatever… The fact that very few people know who the person behind this blog is won’t matter… I’ll still be called an attention seeker… And if I were to include a photo, I’d still be told they were right and I’m disgusting. It happened the last time I tried to discuss this issue.
I digress again… It’s a related digression but a digression nonetheless…
The point is, if it was something about my body language all along, which I’ve suspected for a little while, whilst still telling myself that the body language was something I should control… But if it was my body language, controlled by my nervous system… Then I never really had control of it to begin with and my inability to mimic them wasn’t because I’m stupid… And once again another aspect of my life has been controlled by the limitation of others, not only by my own limitations.
They say that it’s a characteristic of autism to be unable to access the Theory of Mind… But it seems to me that it’s not us that finds it difficult to put ourselves in someone else’s shoes. It’s not us that can’t understand that people think differently to us. We have to live our whole lives in knowledge of this and trying to accommodate it.
It’s not us who exclude those different to us and who have created a world that only works for one type of brain and one type of social being! This isn’t our limitation. It’s theirs!
I’m not saying that some of the responsibility shouldn’t be on us, it should… But currently ALL the responsibility of changing understand and changing behaviours and adapting is put on us! The very people they say can’t cope with change! No! We just don’t cope well with being constantly manhandled and abused into following arbitrary, non-written rules of a society that doesn’t reciprocate those demands one bit!
Ok, I made myself a bit mad a went on a tangent again… So I’m going to stop because what was a migraine is now a headache and I don’t want to make it worse by continuing to look at the screen.
Thank you, once again, for reading my rather weird ramblings.
Please feel free to disregard it all.