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.