I am angry, upset and exhausted. I have spoken briefly before about a “neurotypical mask”, a concept by the girl with the curly hair, which enables me to copy the behaviour of someone who doesn’t have Asperger Syndrome. I’ve spoken about how wearing the mask in public at almost all times is a survival instinct and habit that I can’t shake because otherwise I would find it very difficult to be able to get by in the world. But now I’m sick of it. I’m sick of the bullshit that it allows me to take, I’m sick of how it raises expectations of me that I just can’t live up to, and I’m sick of living in fear of being vulnerable without it.
I’m writing this mainly directed towards anyone who isn’t close family, because only my close family have really seen me with the mask off. This is because I don’t get judged for my behaviour around these people. In the past I’ve said that I really am being myself in public even if I have the mask on, because the mask is just habit and that’s my true self with the mask on. This is only partly true. Yes, that is me being myself with the mask on, but with the mask on it means I’m not being myself. Does that make sense? I wear the mask because in a world suited to neurotypicals, it means that I am literally not allowed to be myself. If I was my uncensored self at college I would basically be anxiety in human form, and probably have the mindset of either a 10 year old or a 50 year old, there is no in between.
What I’m asking for is for people to let me be myself as much as I can be in public. Or at least just validation for my disorder(s). I like to imagine my brain as having a small part of neurotypicalness to make up for the overwhelming amount of Asperger’s/ADD/Dyscalculia. Or maybe I just imagine it like that because I’ve pretty much perfected being neurotypical when I need to be. It’s almost as if my brain is about 80% Asperger’s/ADD/Dyscalculic and 20% neurotypical. Both parts work very closely with each other in order for me to be able to function, but in places like college it’s as if the roles are reversed. I essentially become 80% neurotypical and 20% Asperger’s/ADD/Dyscalculic. This puts a tremendous strain on my energy levels, because in reality I still have Asperger’s, ADD and Dyscalculia, but the part of me that helps me to “shapeshift” and is responsible for people saying “I’d never have guessed that you have Asperger’s” has taken control even though there isn’t really 80% of neurotypicalness in me. I have no idea if this is making sense to anyone but me. For things like writing this blog or talking to people who don’t really understand me, the 80% neurodivergentness is telling the 20% neurotypicalness what to say, and the 20% neurotypicalness is trying to understand what the neurodivergentess is saying and translate to other people what the 80% neurodivergentness is saying. Of course, this is going to take up a lot of energy, so I get exhausted, which I don’t want to be anymore. Does that make more sense or am I just rambling now?
What people seem to forget is that I have autism. I was diagnosed in 2013 with Autism Spectrum Disorder and was told that I’m on the high-functioning end, meaning that I can function well enough to get by in society. This still doesn’t cancel out the fact that I have autism. I don’t like using the terms high-functioning and low-functioning though, because I have worked for my entire school life to be able to present myself as high-functioning. Depending on the situation I can either be high-functioning enough to manage it, or be low-functioning and can’t deal with it. I have limits and very specific needs that need to be met if I’m going to have a meltdown/shutdown free day. I need to be left alone when I have my sunglasses on because when I have them on it means that everything is a bit much and I’m trying to lower the information that’s going in my brain, because I’m constantly processing everything around me. I need to be left alone when I have my headphones in because in 2012 I was diagnosed with Inattentive Attention Deficit Disorder, and having my headphones in puts me in my own world and allows me to concentrate. I need personal space, and a lot of it. I hate being touched. Touch hurts – I don’t know a simile to describe it with, but it just hurts my skin and my bones and it’s generally irritating. Even a light tap if I don’t know it’s coming can be painful. I don’t even like people being close to me because I can feel weird sensations on my skin, and it just makes me feel uncomfortable. I hate all elements of surprise. This means people have to tell me what they’re next action is going to be if they are doing something that involves me, and don’t shout/talk loud. The important thing to do in the majority of these scenarios is ask. Ask if you want to touch me, and if I say a simple “yes”, go ahead, but if I say anything other than yes, even just awkwardly standing there asking why, let it go, move on, stop making me feel uncomfortable. Ask if you want to borrow something that I have possession over, even if I’m not using it. Oh, and I also hate germs, just fyi.
For things like social interaction, I only talk to people when I want to talk to them. I can very rarely just start/join a conversation with no purpose except for the intention of chatting, because I don’t have the social skills to. I rely on social media heavily for the social interaction that I do have because it allows me to consider what people are saying to me and what I’m going to say to them. I discovered recently that I only talk to people with the intention to chat if I’m bored. I only really like people to talk to me if I need something or if they need something. This isn’t meant to come across as rude, but I’m aware that it probably does. The only people I do talk to without me needing something or them needing something is my close family, and this is still only face to face. I also do not pick up the phone to anyone except close family. This is because as soon as I hear the phone ring my anxiety levels shoot up, where as close family barely ring me anyway and if they do I know the conversation is going to be quite short because they probably need something. The exception to this is my dad – I’m used to him ringing up with the intention of a chat/check up because he’s done it for years. I also don’t like to go out with anyone but close family. If I go out with anyone but close family, I just get very tired and overwhelmed easily because of the neurotypical mask, which is why I rarely go out after college or on the weekends. I have a habit of saying “yes” to almost everything though, which I’m trying to turn into a “maybe”, even though the answer will almost always be no. I’m also quite a sensitive person, so anything people say or do to me that can be perceived in the wrong way, most likely would be.
My whole point for this blog post is to tell people that I want the neurotypical mask off. It’s going to take time for me to take it off, I can’t just magically shake a habit that I have near perfected for the last 13 years or so. I’m going to start by wearing sunglasses in public to limit the information my brain is receiving and wear headphones when I can (maybe I’ll buy some normal earplugs that are designed to block out noise). My behaviour may change too – I may become significantly more quiet, I may not understand a lot of things, I’ll only talk when I really need/want to. But people’s behaviours need to change around me too. I would say that I’m not asking to be treated differently because I’m just like everyone else, but I’m not like everyone else, and I have needs that have to be catered for. People need to think about how they approach me with things like their speech and actions eg. are you moving slow or fast? If you’re moving fast you might want to rethink that move! Without other people understanding and accepting these things with no questions and no judgement, I cannot be myself, which leads to exhaustion and anxiety, which can lead to meltdowns, which can lead to shutdowns, and eventually depression. I’m currently on the cusp of going from regular meltdowns to shutdowns, which is why I decided to write this blog post in the first place. It probably seems a bit silly to write out a whole blog post when I could just be my blunt childlike mindset self and just have people deal with that, but it’s incredibly difficult with the expectations people already have of me just because I’m a 17 year old girl in college. So please, no more “I wouldn’t never have guessed that you have Asperger’s”, no more making assumptions. Some days I might seem more high-functioning and some days I might seem more low-functioning, but don’t question it, it’s just how I am on that day. Just let me get on with my own world.
P.S. I urge you all to check out the Curly Hair Project. It’s a social enterprise dedicated to supporting women with Asperger Syndrome, and one of my favourite organisations. There is a website with events, merchandise and an ASD blog, as well as a Facebook page.
P.P.S. I may make a part 2 to this post, as I feel like I haven’t gotten my whole point across, but I just couldn’t delay publishing this for any longer.