Saying It Out Loud

I finally said it out loud. I said “I was actually diagnosed with Autism Spectrum Disorder” to my rheumatologist. The only people that I have discussed it with are my fiance, my mother, and briefly my sister and my father. Last week in my therapy session we discussed self-advocacy, and how and when to disclose. Medical situations were some of the areas in which she said I should disclose.

In the case of my rheumatology appointment, disclosing the information actually answered some long-standing questions for my doctor. He has been treating my autoimmune conditions (Lupus, Sjogren’s, and Fibromyalgia) for the last 12 years. There are lots of weird symptoms I get associated with these conditions, one of which (I thought) was sometimes painful electric sensations throughout my body. Before anyone asks, yes, I was tested for MS since that is a common symptom and MS runs in my family. I was tested for many things, and all of the tests came back negative. There was no explanation for the electric sensations, so therefore, it was chalked up to my Fibromyalgia. But my doctor always remembered this and would always ask me about it at every appointment, always wary of how I might react to medications, and worrying it might induce another “episode.”

He mentioned that again this week at my appointment, and instead of nodding along as usual, I spoke up. I said “Actually, I have an answer for that now. I was actually diagnosed with Autism Spectrum Disorder, and the electric sensations are from synesthesia. It’s caused by loud sounds and busy environments. The episode in question was caused by the loud event I was at.” He said, “Wow, really? Synesthesia, huh. Well I’m glad you have some answers now” and then moved right past it as he typed some things on his keyboard.

I haven’t decided how I feel about it. It feels very uncomfortable. I am torn between wanting to tell everyone I know because it will explain so much, and not wanting to tell anyone because I know it will change how they see me.

I am getting better at saying little bits of it. Acknowledging how awkward and miserable I feel in social situations, describing my hypersensitivity, explaining that my brain functions better without having to filter through a background of annoying music. I know I stim more. I let myself do what I feel I need to do to get through the moment. But I am also more aware of all of my autistic traits. As I am flapping my hands, or stumbling over words, or avoiding eye contact, or whatever, I think to myself: Can they tell? Do they know? Is it obvious now I’m not trying to stop myself?

I think the people I spend the most time with don’t notice a difference. I haven’t really stopped masking–I don’t know how. But I’ve stopped suppressing my stims. My logical guess is that no one will notice because everyone is much too absorbed in their own problems. Even if they did notice, I shouldn’t care. I am me, and that is enough.

I think the problem is that I have spent my entire life not being believed. I’ve had to defend my own experiences in all aspects of my life, to the point where I don’t want to share things with people. I never wanted to share things with people to begin with, but now it just terrifies me. When I share something with you, it means I trust you to accept me. But I feel as though I’ve never been accepted, except for my fiance, who accepts me completely. (Side note, I am endlessly loving that I just used “accepted” following by “except.”)

The times my real self showed through my mask, far from being accepted, I was corrected. Despite my efforts, my mask has never been flawless enough, or secure enough, to succeed in the social sphere. There were small victories here and there, but a fiery death always followed. I am 32. I’ve seen many fires, and fire hardens steel. My mask has been welded to my skin, and it is hard as–well, you know.

I didn’t know it, but I was busy forging myself into something that others would accept instead of working to accept myself. Now, I am so good at it that I don’t know how to stop and I don’t know who I really am. I’ve spent my whole life hating myself for being different. I am getting better at accepting myself. I am doing it slowly, trait by trait, inch by inch. The hate is something I have to unlearn.

I have a feeling that saying it out loud is part of self-acceptance, but to me it’s like trying to find the beginning of a circle. Will saying it out loud lead to self-acceptance or will self-acceptance lead to saying it out loud? Or both, somehow? Also, how can I accept myself when I don’t even know who I am? This diagnosis has lead to so many answers, but more than that, it has lead to so many questions. It’s like there’s a whole other person that’s been living inside me all these years, and it’s finally time to let her out of her cage. Not only do I need to get to know her, but I need to hand her the keys and give her the wheel.

I finally said it out loud–and I’m thinking that’s a good first step.

My crazy weird stims and why I love them.

Another busy stressful week here, doing my best just to get through. But what has been interesting, is approaching each day and each situation with a little bit more knowledge about myself than the last. A topic that came up in my last therapy session was stimming. I know what it is, but until recently I never realized how much I actually stim on a daily basis. As I really delved into that this week, I discovered so many of my hidden quirks that I have been embarrassed about my entire life, are actually stims!

My favorite, most common stim is scratching my head. I especially will do this for hours at a time if I am focusing on something. The act of scratching my head just allows my brain to focus. If I don’t do it, the noise around me is enough noise to drown in. Scratching my head is my tether to reality. When I scratch my head, I feel calm, even if its in the middle of a stressful situation. It doesn’t work perfectly, but it helps calm me down amazingly well.

In searching for my other stims, I was looking for stims that sort of fit that description and was coming up short. Other common stims I do are flicking my nails (aaallllll the time), and hand flapping when I get overwhelmed. And, its not just me sitting there flapping my hands by myself. It’s me flapping my hands and pacing, while complaining to a coworker about whatever situation has me currently worked up. I have always done the hand flapping, I just never knew it had a name.

I’ve been embarrassed by a few other stims I do, but now that I know they are stims, I am going to just do them anyways. I always tried to hide it before, and if I got caught doing it at work I would just die of embarrassment. #1 most embarrassing: putting my hair in my mouth. I especially do this while I am driving and my hands are too busy, so I can’t be scratching my head. But I’ve noticed recently that putting my hair in my mouth and the way it feels pressed between my lips, gives me the same amount of calm that I get from scratching my head. Occasionally if I am overwhelmed at work and I am washing dishes, I will just hold my hair in my mouth while I do them. I know It’s weird. I’m embarrassed to even be writing this, since I haven’t seen anyone else mention this as a stim for them. But it is a stim for me. And if I am not going to be honest here, then I don’t see the point.

The #2 most embarrassing: humming while I work. I hum to myself allllll the time. There are certain songs that make me feel calm (currently it is anything by Simon & Garfunkel). Most of the time, it is within range of others to hear. I hum when I am walking into work, when I am preparing the food, when I am serving customers, when I am washing dishes (with my hair in my mouth). The only time I stop humming is if someone else is actually talking to me, because I can’t listen and think at the same time. Huh. Maybe in writing this, I just uncovered another layer. Maybe I hum BECAUSE I can’t listen while I am thinking/humming. The humming calms me and narrows my field of focus. Its instinctive, to protect me from having my ears and brain assaulted by the sounds of the world.

Can anyone else relate to this? It seems insane that my brain has found all of these ways of stimming to help me counteract all the constant input from the outside world. But it works! If you also put your hair in your mouth, or hum obsessively, please tell me. I would love to know that I am not the only one. And if you do and don’t want to reach out, that’s okay too. I am putting it all up here for the world to see. Unpolished, imperfect—generally the exact opposite of anything I would normally post. But my goal for this blog is to just be myself, my honest self, the version of myself that doesn’t try so hard to over-perfect everything. Because perfect doesn’t really exist, and if I am going to grow and evolve, then its time for me to ditch the person I’ve been pretending to be my whole life. I have been such a chameleon, always imitating. There are parts of myself that I know, and there are parts that I haven’t even discovered yet.  I want to get to know myself as an Autistic woman. And I think the best way to do that is to trust my stims. I am going to stim when I need to, how I need to. And I will do my best to kick the embarrassment to the curb.

I have a lot to offer. And if I am constantly repressing myself, of course I am never going to succeed. So, for me, the first step on this boundless journey is going to be one with my hair between my lips, humming Simon & Garfunkel’s Greatest Hits.