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 Undiagnosed Autism in Elementary School

I think the strangest thing about being diagnosed as an adult is looking back at my childhood and finally having an explanation for everything. As a kid, I never belonged. Anywhere. I had a few friends, but only outside of school. Looking back, every part of my life is a classic example of autistic traits in girls. 

I think back to my years in elementary school and compare myself to the kids in my class who were a part of the special ed program. It makes me angry thinking about it. I have two main thoughts when I think about those kids:

  1. It’s amazing that none of my teachers ever figured out that I was on the spectrum.
  2. Those kids were not treated well, and certainly did not have the equal access legally due to them under the ADA.

The kid I think about the most is a boy named Zachary. Third grade was the very first time I ever thought to myself “Am I Autistic?” I never voiced the question out loud, but it always floated there under the surface. It was Zachary who made me wonder.

I’ve been stimming my entire life. My most common stim is scratching my head. It’s the only way I can focus on anything. In school, focus is obviously required for the entire day. This meant I spent the whole school day with my arm raised high, my elbow bent, and my fingernails buried in my scalp. I always knew it was weird and different. My biggest fear was someone thinking I had headlice because I always scratched my head. I never met anyone else that scratched their head. Never. Until I met Zachary.

Zachary was different. Like many kids with ASD, he also had ADHD. The kids in my class didn’t think of Zachary as “the Autistic kid.” They thought of Zachary as “the bad kid.” This is the part that makes me really angry. Because, I believe, due the teachers’ lack of knowledge and lack of ability to constructively help, it was common practice at my school to have kids with ASD and ADHD sit far away from everyone else. Zachary was not the only one. However, it was also common practice to punish kids by making them sit far away from everyone else, relegated to a lonely desk in the corner of the room.

So, through no fault of his own, Zachary became “the bad kid” because he was always stuck at the punishment desk. Zachary wasn’t really deficient. He was able to spend all day with the class, every day, except for a short period of time one day per week. He was just as smart as everyone else, but he was just different. He also happened to spend all day, every day, with his arm raised high, elbow bent, fingernails buried in his scalp.

I always knew I was different. But it wasn’t until I met Zachary that I saw some of my own traits reflected back at me. Zachary sat at the punishment desk because the teachers made him. Because of his ADHD, Zachary’s behaviors could be distracting to the other kids. I, however, had the opposite problem. Because of my undiagnosed Autism and hypersensitivity (especially to sound), I found other kids distracting. The whispering, the rustling of papers, the scratching of their pencils, the shaking and squeaking of the desk and chair whenever they moved, turned, wrote, erased, wiggled, sneezed.

I was always the teacher’s pet. Obsessed with following rules and being “the good kid.” Always way ahead of my peers in every subject, it was easy for my elementary school teachers to love me. So, one day, I approached my teacher and told her I was having a really hard time working with the other kids in my group and asked her if I could please sit alone. And that’s how I, like Zachary, was relegated to the punishment desk. But I loved it. I could finally do my schoolwork freely.

I didn’t really think much of my new seating arrangement until another faculty member stopped by the classroom to talk to my teacher. Because I was such a teacher’s pet, many of the other teachers knew me. So, when the other faculty member walked into the classroom, and saw me sitting by myself in the corner, she did a double take. She looked at me, with confusion all over face, and said “What did you do??” I will never forget the tone of her voice, and the way she asked the question. She was shocked. Everyone could hear her. I replied “Oh, nothing. I just like sitting by myself.” The truth of the punishment desk was made crystal clear that day. It wasn’t long after that I resigned myself to sitting in a group of four again.

That wasn’t the only time I chose punishment in school. Every Friday afternoon was “free time.” We could go do any activity we wanted. Games outside, movies in one classroom, or games inside another classroom. The “bad kids” didn’t have a choice. They went to study hall, to finish missed homework assignments or do extra work in subject they were behind on. What did I choose to do every week? I chose study hall because I didn’t want to be forced to socialize. Recess and lunch were overwhelming enough. What made it even stranger is that I never had homework or studying to do. The only other option in study hall was to do what kids who were there because they were in trouble did: copy line by line from an encyclopedia. Well, it was a win-win for me. I didn’t have to socialize, and I sure learned a lot about bees. 

It’s amazing that none of my teachers figured it out. It’s been on my mind every day since my diagnosis. My mind is heavy with every new dot, trait, and behavior I connect, but my heart is heavier. My heart is heavy for Zachary and all the others. What they endured was not right. What hurts even more is knowing that those on the spectrum still face these kinds of challenges. While some progress has been made in the decades since I left elementary school, it’s not enough. No one should have to sit at a punishment desk. Those kids were not treated well.