So, today is World Autism Awareness Day and for that occasion I wanted to write a little about my own autism and how it influences my daily life. I’ve talked a little about it on my blog before, but today I want it to be my whole focus. This is not just about awareness, but about showing how autism influences all of us differently, my autism is not someone else’s autism.
For me, my autism and ADD (Attention Deficit Disorder) are strongly connected, as I have both, and there are many overlaps between the two disorders (largely on social spheres and hyperfocus on subjects). For example, I’ve been meaning to plan and write this post since somewhere back at the start of February and now, it’s the second of April, and I’m writing it right now. I didn’t plan it, so I didn’t do it, even though I’ve thought about it a lot. I’m not sure how long this post will be, or what I’m going to write about exactly, but that is often the case when I write one of these “chatting” posts, where I talk about my life instead of something like a guide or review.
Even though I think there maybe more life-history-appropriate places to start my story, but I’m stepping back only two weeks back in time. Two weeks ago I finally got a call from a local ADHD and autism organisation that helps people who are diagnosed with these and closely connected disorders. I’ve been having issues for a couple of months now, first with depression but even after that, I couldn’t get back into a productive schedule. And, as I’ve said before, I’m an author, so if I don’t produce words, I’m not publishing books, and not publishing books means that my income will take a nosedive pretty quickly. I can usually take a few months of this, but not for how long this was taking me, namely more than half a year.
This phone call forced me to think about how my brain was different than normal, not in terms of different from “normal” in the eyes of others, but “normal” in the way I’ve come to expect from my brain. Eh? Yeah. It’s not always easy to explain how my brain is different from others, because my brain is my own normal.
It’s not always easy to explain how my brain is different from others, because my brain is my own normal.
Does that make sense? It does to me, and here is why. You see the world your way, that is your “normal”, my “normal” is how I’ve always experienced the world in my way. In an easier to explain way, how do you explain being colour blind to someone? But until someone who is colour blind either realises or gets explained that they are colour blind, that is their “normal”. And even after they realise that they see things differently, it doesn’t change their “normal” from their own point of view, but it may change the way they expect the rest of the world to experience things.
That is the different between “normals” and that is why it’s always hard to explain why my “normal” is different from other people’s “normal”. It’s not worse, it’s not better, but it’s different. Like everyone’s “normal” is different, but people whose brain or body may function a little different, our “normal” may be more different from your “normal”. It still makes both “normals” just as valid for both of us.
So, why do I keep going on about this? Because one of the ways people who aren’t visibly disabled are silenced are by people telling them “that sometimes also happens to me, that’s normal”. When someone shares a story about something, please, keep your mind open and don’t project your “normal” onto their “normal”, because they’re not the same, when they share their story, it’s very likely that they’re trying to explain that their world and your world are different in some way. They don’t need to be told that it’s “normal” (they already know it’s different from your “normal” anyway), they need you to consider what they told you and dismiss their experiences or struggles.
For me, one of the easiest things to explain how this works is how we all react to social situations. Social situations and especially groups of people are scary to me, and that comes from many angles. The first is the high intensity of sensory inputs. There are so many sounds and so much to see. My brain isn’t good at filtering out the things that aren’t important, so everything just sort of happens at the same time, and I need to actively try to realise what is the most important thing to focus on. And, that isn’t always easy to stay focused on either. So, that’s one way that drains my energy, constantly curating the inputs into my brain and figuring out which ones are the most important. Then there is the aspect that I don’t exactly know how to act in these situations. Do I move in a way that is normal? Am I not showing any tics (small repetitive movements which tend to get worse in stressful situations)? Or am I stimming (self-stimulating movements that are soothing, in my case bouncing my leg, cracking my knuckles or slightly rocking side to side)? These two behaviours I know others will pick up as being “off” and “weird”, and may make people react to me badly. That’s the second thing that drains my energy, am I presenting in a way that people perceive as “not weird”. The third way is that I don’t instinctively know what type of interaction I’ll be put into. Every situation I get into requires a different set of behaviours, I don’t act the same with my friends as I do with my professors or with my boyfriend. But these are all different situations, and keeping them all straight is not as easy when you get into a mixed group of people. Especially in loud and bright environments. It’s draining, exhausting and nerve wracking. I often need sleep after something like this, lots of sleep.
The thing is, especially when you’re aware of these things, you don’t want to stand out, you don’t want to be the “weird one”, because standing out and being the “weird one” makes it so much harder to make social contacts. To make and keep friends. To be included in social situations. I know that because of the overload, I sometimes zone-out, and people can pick this up as me acting “high and mighty” or like I’m not interested, while it’s only a self-preservation mechanic, so I don’t overload. I like people, I like having friends and going out and doing things, but it’s not always easy to let people know this (making friends) or to reserve mental energy for it. Social things exhaust me, even if I like them.
A fun thing? If you let me do a presentation in front of a whole group of people, even if I know them or not, I love it. I love explaining and sharing my passion with others. Because, when I do a presentation, I share from myself, I ground into myself and the other inputs aren’t as stressful, because I know what I need to talk about. I know the subject, I know the presentation and that gives me a huge boost of energy to work with.
Something that I’ve talked about in my previous post on planning, is that I like planners and keeping my life organised. This is twofold, on the one hand, I like knowing when and how things will be happening, keeping control over my life, but also, I calm down when I sit down and do the planning. Setting some guidelines for my life, even if I need to change them later on. But doing this I create control over my life. When you’re constantly refocusing and trying to keep afloat in a world that confuses you, having systems and planners in place really helps. And also, the repetitive actions of drawing out my plans for each day calms me down and relaxes me.
I like repetitive things, like knitting, beading, crocheting or other things that require some focus most mostly is a following of a patterns. Patterns calm me down, they let me relax in ways that few things (not even a nice and warm bath) lets me relax.
There are sounds, scents and textures that will either soothe me or put me on edge. For example, I can’t stand the texture of mashed potatoes in my mouth, but I adore touching things that are fluffy. For sounds, this can be even worse, a door or window that isn’t completely closed and does that little bit of knocking thing, drives me up the wall. The easiest way to deal with this is often avoiding or fixing certain textures and sounds (properly closing the door and such), and to sometimes just search out soothing things.
The reason why this may be important to other people is because I can react more emotionally than is generally accepted, especially if I’m overloaded from certain sensory inputs. I can’t help it, no matter how much I try to not let the sensory overload influence me too much, it still does, and especially when I’m already low on energy, this will be worse.
Would someone who meets me in the street realise I’m autistic or ADD? I don’t know. This has everything to do with everyone’s “normal”. Do I recognise people who may be on the same spectrums as I am? Regularly, yes. Why? Because I’m more aware of these things, generally because certain vocal and body characteristics are things I know from myself of people I already know and are typical for autism or ADD. But I don’t generally know how common this is in other people.
Another thing that is hard for me is reading body language, something a lot of people depend on in social situations. This goes two ways. On the one hand, I have a hard time reading different emotions from people’s faces or voice. So a loud voice can simply mean someone’s excited, but my brain may interpret it as someone being angry (a common one for me), which puts me on edge. As a side-effect, sarcasm doesn’t properly register for me. As an automatic response I’ll respond to it as if it’s meant to be taken literal, before my brain picks up on it probably being meant sarcastic. I usually laugh it off, but it’s embarrassing and frustrating. The other way around, I can get really into a discussion and my voice will raise or even just being nervous can do the same, many people in the past have picked it up as me being upset or angry, while I’m nothing like that. I’m bad at interpreting social situations, but also to express in these situations. This also means that social situations can be very draining when I’m pushed into them.
Wow, a long post, I’m hoping this even makes sense…
Thank you for reading all the way down to here. I know, it’s very uncommon that I’ve got no images in my posts and here I am… So, did you learn anything new, or do you have your own stories to share? Post them below!