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.

Not what I want to hear.

I first stumbled upon the idea that I might be on the spectrum when I saw a post that someone I followed on Instagram had shared. It was a graphic that had symptoms of Autism in females listed in a colorful column. Reading those bullet points was the first time I really recognized myself—so many parts of my personality, my being, that had never been described anywhere else. To my conscious mind, they didn’t exist until someone else held up the mirror.

Naturally, I began researching and collecting as much information as I could. After 8 or 9 months and a grueling search for a specialist that could assess adults, I finally have my diagnosis. I now know the reason I face challenges on a daily basis, and my work with the specialist is only just beginning. But now what?

I see the specialist once per week. Well, let me tell you, after 32 years of feeling physically stuck behind an invisible wall, I have no desire to progress at a rate of 45 minutes per week. If you are an Aspie, or you love an Aspie, then you will already know we don’t do anything half-assed. When something sparks an interest, we pursue it balls to the wall and damned be food, sleep, or anything else that gets in the way. The problem I face now, however, is the sheer lack of resources.

There is just not enough information to consume, and what little information there is, seems to be all the same. I’ve watched the same YouTube video and read the same blog over and over again, just filmed by different YouTubers or written by different bloggers. While this information is valuable and serves a purpose, it’s just not what I want to hear: “Ten symptoms of Autism.” “Could it be Asperger’s?” “7 Little Known Symptoms of Asperger’s.” “How to Spot Autism in Girls.” “5 Surprising Signs of Autism!” “Asperger’s or Autism—What’s the Difference?”

While many of these videos and blogs are written by people who are actually on the spectrum, they are the same thing on repeat. What is missing is firsthand accounts. Real experiences. Detailed problem-solving. I need more than to just recognize myself in a detached list of symptoms and the ways they manifest. I need to relate to other people. I need to learn from their experiences. I need to know how they worked through a problem. I need to know how they made it to the other side of that invisible wall. Am I alone in wanting to make this connection?

I know from seeing memes on Instagram that we all experience similar things. The way a single picture and a few short words can capture a lifelong experience is both awesome and disturbing. Awesome in the feelings of validation it can evoke, and disturbing in the knowledge that these experiences are not spoken about—experiences like what I am experiencing. 

Experiencing. Right. Now.

As I write this, my upstairs neighbors have a fan going, and I can hear the motor rotating. The vibrations are coming through the ceiling. If I asked my fiancé, I know he wouldn’t be able to hear it. I don’t know if anyone else I know could hear it. But I can. It is fingernails on a chalkboard to me.

I tried covering my ears with my noise cancelling headphones, but the cancelling of the ambient sound only makes my tinnitus louder. And I can still hear the repetitive whirring of motor through the headphones anyway. If it was the same level of sound throughout the whole rotation of the motor, it would be okay. But it starts quiet and gets loud, and then repeats, all in the space of less than a second. It’s like a hammer on my eardrums and my brain and I want to dig my nails into my skin. But I don’t. Constant sounds to me, are soothing—the fan I have in my bedroom. Repetitive sounds, to me, are absolute physical and mental torture. Nothing more, nothing less.

It is things like this that I want to hear about and read about. Can anyone else feel and hear their neighbors fan repeating its sinister vibrations through their ceiling and their bones? How did they respond? What did they do? How did they turn their brain and their bones and their ears off to deal with it? I will never know unless they share.

And in the spirit of sharing, if you are now wondering how I will choose to deal with it, my answer to you is this: I will drown it out. Blocking the noise with the headphones didn’t help. But, the loud fan I have in my bedroom is magic; It is the ultimate white noise. Loud enough to drown out most noise from upstairs or outside, loud enough to drown out my tinnitus, and constant enough for my brain to not even notice that it’s there. So I am going to get in bed, turn my fan all the way up, and listen to Jim Dale read me a Harry Potter book on Audible for the 1,738th time—because that IS what I want to hear.

The Beginning.

I finally feel like I am allowed to talk about my experiences. I am finally allowed to be unashamed, unembarrassed. I am finally allowed to take off my mask, because for the first time, I recognize it’s there. I know that my experiences are real—my experiences which are the result of the wiring inside my head. But as Dumbledore so brilliantly says: “Of course this is happening inside your head, …but why ever should that mean it is not real?”

My experiences are real. The ones I’ve denied and kept quiet about. The ones I’ve done my best to ignore, the ones I’ve been told are only in my head and I just have to outthink, just have to move past, just have to push through, just have to exercise, just have to practice, just have to deal, just have to, just have to, just have to.

Not only are my experiences real, but over the last 8 or 9 months, I have learned that they are not unique. My experiences belong to many others, too. And there is no “just have to” ANYTHING. Finally.

I finally have a framework that makes sense for my life—a framework I can finally build from. I guess I shouldn’t really use the world “finally” because it isn’t “final.” This isn’t the end. It’s only the very beginning. But what other word do you use for something you spent 32 years waiting for? 32 years struggling AGAINST instead of working WITH? After 32 years, there is no other word—so “finally,” it is.

At 32 years old, I finally have an explanation. I know the reason my experiences in life seem different from everyone else’s. I finally have a word for that invisible wall, keeping me separate from the rest of the world. I know why my senses overlap—why light is so loud, why sound is bright, disorienting, physical pain. Why I can hear, smell, taste, feel, and see the things that no one else seems to be able to. Why my entire physical experience of the world is different.

I have always wondered what is wrong with me. Always wondered how I can be so smart, so talented, so driven to contribute something meaningful to this world, and yet so physically unable to handle some of the most basic things life can throw at a person. Things like timeliness, things like laundry, things like friendship.

It wasn’t until this past winter that the possible explanation suddenly presented itself to me through someone else’s post on my Instagram feed. I was a little stunned, seeing it. It was a word I was familiar with, but I had never seen explained in a detailed way. I had never thought to look it up, never thought it could apply to me. But this Instagram post spelled it out in a way that was undeniable. This is a word that belongs to many, and seeing it clearly for the first time, I knew.

I began researching, collecting every fact, every story, every other lived experience I could. I began reading books, blogs, and journal articles. Watching Ted Talks, lectures, and YouTube videos. I knew, but I had to verify. Every shred of information I gleaned added more and more evidence to the pile. The pile grew, and yet I could not find a single thing to argue against or contradict what has now been confirmed through weeks of assessment by a specialized professional.

The word that belongs to many, belongs to me too. That word is Autism. And finally, I know—there is nothing wrong with me.