A Very Autistic Vent

[Sadrienne 242]

So I need to vent a little. Hopefully in a constructive manner. 

 

It's to do with autism. Specifically, the misconceptions that people have about autistic people, and the annoying insistence that society has that what you see is what is real. Or that if you can't see it, it mustn't be happening. 

 

I am an autistic person. I have been since I was born, but I only found out a few months before my 30th birthday. I'm also female, which meant that the one time my mother did take me to a doctor and ask for an assessment, she was laughed out of the practice. Because girls don't get autism, okay? They just don't. 

 

No. No. We do. Girls are socialised differently, and it displays in different ways. It looks different to Sheldon from the Big Bang Theory, and if it looks different it can't be autism, right? Well it is. 

 

I have learned through a lot of trial and error how to look the part, to say the right things, to smother my desire to talk about the things I love (because it bores people), how to pretend that I'm not slowly dying inside when in an overwhelming environment, how to watch people's lips so they think I'm making eye contact when I'm not, how to bottle up that intense wave of distress when things don't go to plan, and so much more. I look like a functioning normal human being, most of the time. I sound like one. People assume that I am human. 

 

Hiding it doesn't make it go away. Here are some of the ways that autism impacts my life:

 

I struggle to work more than six hours at a time.

I worked this out by taking notes after I finished shifts of various lengths, and six and a half hours is roughly where I start to deteriorate. By "deteriorate" I mean I start to shake, my vision gets little coloured clouds that appear (or my vision becomes super-high-definition which is VERY DISCOMFORTING BY THE WAY), my skin feels like every cell along it is vibrating and I want to thrash around until all of the movement stops. When I finally finish a shift that is too long, I usually shake until I end up in tears, am sick, or have a very long sleep.

 

I can't tune anything out.

Those little sounds that you hear at the start but forget about? I don't forget about them. They continue droning in my ear and through my awareness. At the moment I can hear the birds in the background, my computer whirring, the cars on the road outside, and the gentle buzz of my overhead lights. I can hear lights for goodness sake. The same goes for visual things---I can't ignore faults in the screen, flashing lights however regular they may be are still distracting... and touch sensations too. I have to be picky about my clothes because if one thing doesn't sit right, I'm aware of it every second of every moment I am wearing that item. I can feel how my hair is sitting on my head. And all of this sensory information may sound good and fun, and yes---I have excellent vision and hearing---but not being able to tune it out is not the same as being attentive to it.

 

Yes, I can sense it. But there's so much going on that it all just becomes a big sensory soup in which I can't process any of it. Sure, I can hear and see you talking at me, but unless I have the space to focus on your speech, I can't understand you. Or I may not be aware that you're more than just more background noise. Hearing is not listening. Unless I know you're talking to me, and I am attentive to your speech, you might as well be speaking another language. Cause that's effectively what I hear.

 

I lose words. Often.

I joke that I "speak better from my fingers than my mouth", but most of the time it's not very funny to me. There's so much emphasis on being able to relate to people face-to-face that my inability to speak at times can be a real disability. You know when you're trying to remember the word for that thing, and it's on the tip of your tongue, but you just can't think of it? Imagine that feeling but for whole conversations. I have a set of "fallback" phrases that I go to, things that I can say in an almost robotic manner that will make me look like I'm functioning when really I'm sitting there wondering when the entire English language leaked out my ears. I can fudge my way through a conversation with these non-committal phrases, gestures, and sounds. Conversations that I need to have, I plan for. I rehearse. I come up with sentences that need to be said. 

 

Text is vastly different. I don't have that same struggle. The more I converse via text, the more I find my speech improves as well. But I still frequently find myself locked in a silent box while my body "Oooh" and "Ah huh" along with the conversation.

 

I don't know the rules. Of anything. Ever.

I'm so perplexed by all the social rules that seem to be known by others, but make no sense to me. And I get very upset when I realise there's something I should have known (because it's obvious to everyone else) that I didn't click on to. My boyfriend recently teased me about not offering him any of the lollies I'd bought at the train station, but he never asked. Why would I think to offer something to someone if I don't know they want them? At the end of the date, when he walks me to the door, apparently I'm supposed to invite him in but I don't know that! I do now, but I still don't get how I'm supposed to just know to do that. And then people ask these really vague questions like "How are you?" and then get upset later when it turns out that you didn't tell them your life story, in fact you actually told them how you were. 

 

You know, if people just asked what they meant and made their expectations clear, I think the world would be better for everyone. Not just autistic people.

 

The Plan is king.

Plans and structure are what fuel me. I don't deal with uncertainty... at all. I need to know what's happening, when it starts, when it finishes, when I can reasonably expect to be home in bed, how long the travel times are, all of that. Once a plan is set, I need advance notice if it's going to change. You can't... you can't just say we're going out for icecream, and then when I think we're about to go home, tell me that you want to go somewhere else. No. That's not how this works. By that point, I've already established a timeline in my head for when I will be at home, what I will do after that, and changing the plan takes all of that and just shatters it. Then I have a big uncertain and empty hole in my future and I don't like that. I feel very anxious about that. 

 

Once The Plan is fixed in my head, it's very hard to change. Big changes will usually trigger a meltdown, especially if they're very last minute. Sometimes The Plan is something other people aren't aware of. Maybe we've gone out for dinner every Friday night for a few weeks, and now I've accepted it as a pattern that I've factored into The Plan. This happens a lot with my family, who will get together regularly  on the weekend, and then randomly not do it one week. It wrecks my head, because they don't know what they're doing one day to the next. But I have assumed that these things are set, and when they're suddenly not I'm  lost. I have a whole heap of time unaccounted for. And when you believe that on Friday night at 6pm you're going to be social, sitting at home alone instead feels painful.

 

Yes, I have emotions. Too many of them.

One of the big misconceptions about autistic people is that they don't feel. Or have empathy. Or any consideration for others. One of the reasons I hate The Big Bang Theory is how the portrayal of Sheldon bows to those misconceptions. It's so false I want to scream. I have emotions. I have a lot of emotions.

 

I don't know how to process them. I don't know how to show them. I have an excellent poker face, most autistic people do. But if you're not making the right face for the right emotion, people assume you're not feeling anything. I am. I'm just so insanely overwhelmed that moving my face muscles so the rest of the world can see feels... superfluous. The same with empathy: yes, I can sense that you're having a strong emotion but holy heck I don't know what it is or how I can help. I want to, but I am a rabbit in headlights here. I feel other people in emotional distress like a kick to the gut and I don't know what to do about it. The lack of consideration myth comes from that, and also from not understanding social rules. We show things differently, but it doesn't mean we don't feel or care.

 

My reactions are not always what you expect.

This one distresses me. Doesn't sound like much, right? But think about this: how many times in crime shows do you see people come under suspicion because they didn't react the way law enforcement expected? 

 

People like Lindy Chamberlain and Amanda Knox were persecuted almost entirely on how they acted. Evidence means little when you look/sound weird. So yes, it concerns me that when people expect me to be sad, I either can't show it, or I go the other way. Because in a high-pressure situation, I will be the person who looks like the odd one out. I will look suspicious purely because I don't act the same way as those around me. One of the main reasons I sought an autism diagnosis was to have that piece of paper that confirms that my brain operates differently. And how is it even remotely okay that I had to go that far to insure myself against just not acting like most people would?

 

I am not crazy smart. Nor do I accept "high functioning" as a label.

I'm not a stupid person, but there's a big misconception that if you "function" as an autistic person (eg. don't need external support) you must be the genius/high functioning type. Like all autistic people, I have my strengths and weaknesses. One of the key features of autism is that there is a much bigger gap between strengths and weaknesses than there is for a regular person. So while a regular person may be "average" at a wide set of skills, I am rarely "average" at anything. I'm either pretty great, or utterly dismal. What those strengths and weaknesses are varies from person to person, which makes it difficult to come up with any sort of blanket therapy for autism. 

 

In that sense, "high functioning" is a very misleading and damaging term. It suggests that a person is either equally capable, or more capable than a regular person. It also suggests that those who do require external assistance, or are "low functioning" don't have the same capacity as a regular person. Both ideas are false. With the right tools and assistance, "low functioning" autistic people have some amazing talents that get overlooked simply because they struggle to function in ways that are socially expected. Similarly, "high functioning" autistic people have incredible weaknesses that get minimised, shoved away, or ridiculed because "you're smart, you should be able to do that".

 

I can't drive a car. According to almost anyone, I'm smart enough to be able to. But I can't. It's a basic skill that is expected of most adults, and as an allegedly "high functioning" adult, I am not exempt. I have not yet managed to successfully work fulltime hours without falling into a mess. Again, something that is just expected of adults, and assumed that I am also capable of it.

 

This is why I refer to myself only as an "autistic person". Because how I function and with what level of success is dependent on the task at hand, and honestly, none of anyone's business.

 

Meltdowns are the worst.

Have you ever been struck so hard by something, that all you could do is rock and scream and cry? When you knew it was irrational to be upset, but there was an electrical storm in your brain and you legitimately couldn't stop until your body was physically too worn down to carry on? I can hold off a meltdown for a limited time, and I use that to ensure that I have privacy. That's something I've practiced because it is not a pretty sight to see a grown-ass woman do that. It also changes the way people see you in a very irreparable way. But it's like needing to pee: you can only hold it for so long until it bursts.

 

Meltdowns are exhausting. I will sleep for 18-20 hours after one, and usually have to cancel any work I have on the following day. They leave me weak, shaking, and in a very confused state of why can't I just be normal???

 

I'm lucky enough to not have too many physical aspects to a meltdown. I don't get violent, I don't destroy things (although I am vividly imagining doing so). I sometimes hit/kick/scratch at myself, but never with a large amount of damage. I get my nails done regularly so that they are a: pretty, and b: blunt at the tips because yes, I have dug too deep and it wasn't fun. Mostly it's the screaming/crying, feeling like my whole body is vibrating and on fire, that I want to move but am also paralysed, electric shocks in my brain and body, and knowing that all I can do is just wait for it to stop.

 

Withdrawing isn't great, but it's better than a meltdown.

The process of "withdrawing" is a self-defence mechanism. It's essentially shutting down yourself to stop from going over that edge. People get really annoyed when you do it at social events. It's kind of a daydream state, you withdraw into yourself and that's pretty much the only way you can successfully ignore what's happening around you... thus not letting it add to the mounting sensory crap that will drive you toward a full break. I will often sit with my hands over my eyes, cause blocking visual stimuli is easier than blocking anything else. 

 

It can make you unresponsive. You're not really there. I got in trouble for it at school, accused of not paying attention/daydreaming when really I was just trying to distance myself from a world that was too much. On the upside, you can actually daydream in this state and I come up with some of my best story ideas. But withdrawing is still just a bandaid for those times where you can't get what you really need: alone time.

 

And I need a lot of alone time.

It is legitimately the only way for me to unwind. On a good day, that just means time to myself in my own house. On a bad day, when I'm feeling closer to that meltdown edge, it means time alone in the dark... and if I'm desperately trying to stave off a meltdown, it means time with the "self care set": my heavy blanket, thinking putty, a TV show I enjoy, and the cat. This is how I calm myself down. For every hour of social time, I usually need about three hours of alone time to recover. More if there's been uncertain plans, intense environments, or I've just had to be around a lot of people.

 

Fortunately, online stuff also counts as alone time. Because I have ultimate control over when I respond/how social the interaction is, and I don't feel the burden of having to entertain someone. Otherwise, that much alone time is very... isolating. So I am forever indebted to my online people for being there to socialise with when I can't deal with physical people. If it sounds complicated and messed up, that's because it absolutely is.

 

In short, yes. I'm autistic af.

You won't notice it until I point it out. But that doesn't mean it's not there.