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.

Good Vibes.

There are about twelve subjects on my mind today. All of them are related to Autism and how it is impacting my life. There are a lot of large, looming questions I need to answer that are just floating around my head on a loop. But, I don’t have any answers for those yet. So, for now, I will have to satisfy my need to share with you by discussing something both mundane and critically important: earplugs.

Today was expected to be a crazy day at work, so it was the first day I brought my new earplugs with me. I recently bought those popular Vibes earplugs that allow you to hear everything, but just at a less intense volume. I’ve been messing with them for a few days now and finally found a good fit. (Apparently, my right ear is a size medium and my left ear is a size small. Who would have guessed one person’s ears could be such different sizes? No wonder I have a hard time finding comfortable headphones.)

One of the things I struggle with at work is the noise around me. I run a smoothie and ice cream shop. Right off the bat, you’re probably going “Oh, the blenders! Yeah, I’d need earplugs too.” Yes, they definitely helped with the blenders. But—that’s not why I brought them. The hardest thing for me to do at work is have a conversation, especially when there is as much going on as there is right now. I will be having an important conversation with my coworker about the new menu items, while the owner is having a conversation with a loyal group of customers, while another customer is having a conversation via FaceTime with someone else, and two other coworkers are discussing our supply of fresh fruit. My brain will not filter any of that, so I am forced to try to understand what five or six other people are all saying at the same time, isolate from all of those words what the person in front of me is saying, and then select the correct response on the drop down menu selection from the “acceptable dialog” program running in my brain at all times. 

(Another fun fact I’ll share because I haven’t seen anyone else say it—I don’t always respond to the correct conversation. It can get especially awkward because the person I’m actually talking to won’t have any idea what is going on in the other conversations in the room, so my random response comes totally out of nowhere.)

Today, I put the earplugs in whenever too many conversations were happening at once. I could still hear all of them, but what the earplugs did was they lowered the volume on the conversations happening further away, and my brain was able to separate what was happening directly in front of me with a little less effort. It still required an extreme amount of focus, but it became possible. I think that is the most exciting part about finally having a diagnosis—more things are going to become possible. 

In learning that I have ASD, I am finally learning how my brain works. I have words for the things I struggle with and, for the first time, I also have potential solutions that make sense. I’ve been looking for solutions my entire life, but it’s as if I’ve been reading the wrong manual. Though there are perks to having all of your senses on overdrive, it would be nice to be able to turn the volume down every once in a while. And that’s what I did for the first time in public today. I’ve got the right manual now—I don’t have to wish I could “reset to factory settings” anymore. My version is different than everyone else’s, and that is actually a pretty cool thing. (Are you still following this metaphor?) In short: the earplugs were a success.