Interlude: Guaranteed way to get a punch on the nose

“Everyone is on the spectrum somewhere.” This phrase is one I’m sure that anyone who has anything to do with someone on the autistic spectrum has heard repeatedly. Some might even have said it themselves. It’s a phrase that makes me want to hiss and spit like an angry cat. The reasoning behind it is both simple and flawed. Everyone feels awkward in social situations sometimes. Everyone can, to some degree or other, relate to one or more symptoms of autism.

By that logic everyone has cancer to some degree because we all have cells that divide, we all, in some cells in our body have some mutations that cause cancer. If you agree with that statement, stop reading now. If you realise the above statement is ludicrous, allow me to explain why the phrase “everyone is on the spectrum somewhere” is equally nonsensical. Having an autistic spectrum disorder extends so much further than social situations. It means so much more than the triad of impairments. Autism affects the way you relate to other people and to yourself from infancy. It shapes the way you think and colours your entire world. Dividing cells do not equal cancer. Being socially awkward does not equal autism.

I’m sure that most people who say “everyone is on the spectrum somewhere” mean well. I’m sure that often the intention is ‘I can relate’ or ‘there’s nothing wrong with you, you’re not that strange.’ It’s meant to be reassuring or comforting. It isn’t. If everyone is on the spectrum somewhere then why am I struggling so much? If everyone is on the spectrum somewhere then what is wrong with me that makes it so much harder to deal with people? If everyone is on the spectrum somewhere then am I just over reacting and making a big deal out of nothing? Those are some of the thoughts that have run through my head when people have said that phrase to me. It isn’t comforting, it invalidates everything I struggle with.

If you know someone with Asperger Syndrome (AS) or Higher Functioning Autism (HFA) – the people I suspect the phrase is directed at most frequently – it can be harder to spot their differences and difficulties. This is especially true if you don’t spend a lot of time with the person, if they’re female or if you met them as adults. There are a few reasons for that. The first one being, you probably don’t see the hardest days. The days I wake up in the morning and find the light blinding and the sound of the slightest creak of a floorboard as I roll over in bed deafening, I don’t go out. I stay away from people because I know I can’t deal with them. I know that the slightest thing will make me snap. I shut myself away and try to be as still and quiet as possible. Most people don’t have days like that unless they’re hung-over. I don’t need alcohol to have a hang-over, I get a similar feeling when I crash because I’ve been pretending to be human for too long.

The second reason is that people learn to adapt. What people probably don’t realise when they’re talking to me is that my social skills are conscious. I have to think about it because it doesn’t come naturally to me. Even simple things like when I ask ‘how are you?’ Or ‘did you have a good time at….’ I’ve had to learn. I have to remember to ask those things because it isn’t automatic. It isn’t that I don’t care, but I don’t have the same curiosity about people’s lives as other people do. When people ask me those same questions in return, I have to remind myself that they weren’t there with me and that they can’t see inside my head so that I give them an answer in context. I am constantly second guessing myself: have I said too much? Not enough? I still can’t often tell from another person’s face whether they’re bored or not.

Third, the retelling of a meltdown is not nearly as dramatic as the live event. It’s much more easily brushed off. Meltdowns happen less, but they still happen. There are still times when I become an overgrown toddler in public. It feels like being a toddler too. My whole body is so full of fear or frustration or hurt that I feel like I’m going to explode with it. So it comes out in a scream. Or a violent flinging of objects or flailing of limbs. The grown up me sits behind my eyeballs watching all this happening and crying stop. But like a tantruming toddler, I can’t stop. It isn’t the same as upset. It isn’t the same as angry. It isn’t reaching the end of your tether and snapping at someone. It’s losing control to the point where you scare yourself.

Fourth, I am capable of toning down obsessions around people. Some people on the spectrum do not have a special interest or obsession to a high degree. Some people do. It is more than just an interest. It is more than being excited about something. It takes over your life. It will be a book that I will spend all day reading cover to cover only to turn back to the beginning and start again. I will shut myself off. I will stop doing other things. I will lose sleep over it. I will feel like I’m walking myself round and round in circles, but this is all I can focus on. If I’m talking to people, chances are I’m not at the deepest point of obsession. So no, it doesn’t come across as that intense.

Lastly, I have lived with Asperger syndrome my whole life, I have learned ways of dealing with it. If I have to make a phone call, I can ask people to do it for me. I have breathing techniques and distraction techniques to help deal with sensory difficulties. I have rote learned social norms. What you see, is the practiced version of me. What you don’t see, is the effort that takes.

 

No, everyone is not on the spectrum somewhere. That’s okay, you don’t have to be autistic to be unique, or special, or understanding. You don’t have to be autistic to have difficulties in social situations. If neurotypical were plotted on a bell curve of eccentricity, from odd to boring, the autistic spectrum would be its own bell curve, shifted over to the left.
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Autistic Prvilege

If you don’t have to think about it, it’s a privilege. I read this the other day and it more or less flipped the way I view myself on its head. I don’t see the world the way most people do. I am, of course, aware that we are all unique individuals and as such have our own unique perspectives, what I mean when I say I don’t see the world the way most people do is that I don’t belong in any group or community. I’ve tried to be a part of several but never got beyond the outskirts because I couldn’t follow the party line. Partly it is having Asperger syndrome. Partly it’s the way I was brought up. Partly I’m sure it’s that somehow the combination of connections in my brain has resulted in an outlook that isn’t ideally compatible with anything I’ve yet come across. It can be lonely. It can be frustrating. It can be incredibly isolating. Reading that line made me stop and think.
Perhaps I’m taking liberties with my interpretation of it as ‘if you don’t think about it, it’s a privilege’ because undoubtedly some of these things are things I shouldhave to think about, but I don’t. I am Agender, asexual, technically panromantic, I have Asperger syndrome, anxiety and depression. I’m white, my parents separated when I was four but still love me and each other, I’m able-bodied, I’ve always had a roof of some description over my head, I’ve been bullied but I’ve never been a victim of violence. I’m telling you this so you know where I stand in the highly possible chance that something I write offends you.
So why, as a member of several minority groups, am I particularly privileged? Quite simply because I don’t think about it. I have known that I’m Agender since I was a small child, but it was just a part of me, I only use the word now because it exists and I have no reason not to. I don’t need it. When I refer to myself in the third person I use ‘xe’ or ‘they’ most of the time and perhaps I would prefer it if people referred to me that way, but I wouldn’t bat an eyelid if someone referred to me as ‘he’ or ‘she’. I know who I am, it isn’t a big enough deal to me. Sometimes I wonder if it ought to be.
I don’t have a sex drive. Relatively recently I discovered that I genuinely don’t like sex. I’ve never understood the appeal of it outside of sporadic curiosity. Sometimes I’ve wondered if maybe I should feel otherwise, but more often than not I’ve simply accepted it as another of my peculiarities. When I feel particularly alone I’ve wished that people perhaps understood that I could love and want to spend my life with another person without wanting sex. But I don’t mind explaining that concept to people. Their lack of understanding doesn’t anger me, after all, how can they comprehend something they’ve never come across? I, after all, cannot for the life of me understand why people would want to have sex for pleasure. That’s after having it explained. Repeatedly. Not from people trying to change my identity, but by people trying to help me understand their perspective. I don’t feel marginalised by the letter ‘A’ not always being included in the acronym LBGTQ, I don’t understand why it matters. Essentially in my head LBGTQ refers to people who have sexual or gender identities outside of the norm and it doesn’t entirely matter which letters are included in the acronym. I don’t count myself particularly as part of the queer community precisely because I’m not bothered. I am who I am, my gender and my sexual orientations are a tiny part of who I am, those are not labels I’m defined by.
My mother uses the word ‘idiot’ as a term of endearment. It’s not directed at me because I’m slower to process things. It’s not used with the intention to offend. It doesn’t bother me. I’m not upset by it. There are people, who would be offended by that on my behalf or on the behalf of people who would once have had the word idiot used against them in a derogatory way. I don’t care, surely that is my choice? That doesn’t mean I think it’s okay to call people idiots in a malicious way. It means that I personally am not bothered by it. In the same vein, being called ‘mad’ doesn’t upset me. I’m not offended by the word ‘mad’ being used to describe things or situations or even people. I am not offended by words in and of themselves, the context matters. I am privileged, because I don’t think about those words in how they could potentially be used as a slur against me.