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.

How to Avoid a Meltdown… According to My Therapist

As I mentioned in an earlier blog post, I have been having near daily meltdowns since I returned to work about two months ago. At first, we thought maybe it was just due to the increased stress from the pandemic and from being sick with COVID-19 in March.

That didn’t really sit right with me, though. I knew that wasn’t the whole picture. I have been dealing with health concerns for the last 12 years with my autoimmune conditions. My meltdowns used to happen on occasion. Maybe once or twice a month, and sometimes with specific triggers (like an important social engagement I had to get dressed up for). I’ve done insane things in the middle of meltdowns before. At their extremes, I’ve thrown a heavy chair down two flights of stairs and ripped a door off it’s frame. But these incidents were pretty spread out. Daily meltdowns is completely new territory for me.

About halfway through the discussion with my therapist, the real reason for the meltdowns occurred to me. It was just stress. It was grief. I lost my cat suddenly a few months ago. Four months ago, to be exact. Four months and I still cry almost every day. He was my baby since the very day he was born and has been by my side my entire adult life. I still don’t know what my life looks like without him.

I never realized how much comfort he actually gave me until now. Losing him has thrown me into a state of chaos. I seem to have lost the ability to regulate myself and recover from being over-stimulated. All I used to need was some quiet alone-time. Now, I find myself unraveling with no way to stop it. Sometimes I will be unraveling without even being aware. My conscious brain will think I feel okay, and that I actually had a good day at work. Then I get home and completely go to pieces because I trip over a stray flip flop, accidentally bump my elbow on the door knob, or the blinds are making a horrible flapping sound with the fan on. In fact, I’m on the brink right now because my upstairs neighbors are watching movie so loud it can be heard from two buildings away (they do this on the regular—honestly never had neighbors more oblivious or disrespectful. Random passersby will even comment on how loud it is when they are out for a walk around the block).

According to my therapist, I need to find ways to help regulate myself throughout the day. One of the things she has asked me to do is a sensory scan. What am I hearing? What am I seeing? What am I smelling? What am I tasting? What am I feeling? I am supposed to go through each sense and just notice what I am experiencing. This will help get me in the present moment and will help ground me.

Another little exercise she has asked me to try is deep breathing. Since I’ve been trying to pay attention to my breathing I’ve actually noticed I tend to hold my breath a LOT. When I start getting tense at work, I just stop breathing. I’ve started combing those two exercises together, so whenever I notice myself not breathing, I make sure to breathe and then I do the sensory scan.

I’m supposed to give it a few weeks with these new techniques to see if things improve, but I’ve already noticed a difference. The only other thing I’ve changed is what I do after work. I’ve been taking more baths and experimenting with different bath bombs (not easy when you can smell things from a mile away). I’ve managed to actually find a few bath bombs with a suuuper light fragrance that doesn’t make me sick. With my highly sensitive nose, I can’t get within a mile of a store like Lush or Bath & Body a Works, so I’ve taken a few leaps of faith online and amazingly it’s worked out for me.

And on that note, I am going to go take a bath before bed with a different kind of bath bombs. I’m out of all my usuals. Cross your fingers for me—I need something relaxing right now and I’m not sure if “cotton candy” is something I can tolerate on my skin for 24 hours.

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.

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.

Undulating Special Interests

We all have ways of coping. One of the ways I cope is with my special interests—only, I never knew they were “special interests.” My whole life, I have always had obsessions. For me, they come in waves. Most of the time it is something artsy or crafty. Origami, watercolors, drawing, graphic design, coloring, knitting, quilting, crochet. But it’s also been super girly things like make-up, hair products, nail polish, or nail art. Recently, my special interest was succulents, but since my stress levels have increased at catastrophic levels, I’ve turned back towards art.

It started with puffy paint because I wanted to make myself a button to wear at work, so people know I am immuno-compromised. Once I had the puffy paint, I wanted to paint other things too, so I just started creating. I found it helped me relax because it took all of my focus, so my brain could have a little bit of quiet. Somehow, the puffy paint obsession turned into a gel pen obsession. Now I am interested in learning how to create gel pen art—specifically bright, colorful mandalas. 

When I have a special interest, I pursue it to the exclusion of everything else. It is all I want to do. It impacts my self-care, my eating, my sleeping, everything. Now that I know a little bit more about myself, I am able to look at my special interests through a different lens. I am able to enjoy them as intensely as I always do, but I don’t have to let them consume me. In fact, this blog post is a perfect example of that. I managed to pry myself away from my gel pens and compass long enough to pull out my laptop and write this.

I know I have to get up for work tomorrow very early, and I am well-aware how much I am struggling to function. As soon as my fiancé left for work this evening, I took my night medicine. I am usually one to put bedtime off as long as possible, and it is especially hard to make myself go to bed when I am in the middle of exploring a brand-new special interest. Having my diagnosis doesn’t change who I am, but it does allow me to see things a little clearer. I have always been a very logical thinker. The added clarity gives me the space to view my special interests a little more logically, and (so far, at least) I am able to moderate myself a little more. 

Part of that increased moderation comes from feeling far freer (how’s that for unintentional alliteration?) to obsess. I used to judge myself and wonder why I couldn’t have hobbies like “normal” people. To me, “normal” people had one or two hobbies they pursued regularly—and I mean that regularly as in an average amount of time spent and regularly as in on a regular basis over a prolonged period of time. My hobbies have never been regular. They fade in and out and burn with a ferocity that consumes all. My list of hobbies is as long as my arm.

What I love about my arm-length list is that not only am I always adding new things, but I cycle back around to almost each and every one. Not only do I have the joy of finding new interests that I love, but I also get to experience the joy of rediscovering the old interests I set aside for a while. There are many challenges I face in this neuro-typical world, but there are also gifts. My undulating hobbies or special interests is just one of the gifts my Autism has given me, and for the first time, I can truly appreciate that.

Now, if you’ll excuse me, I’m off to draw a few more circles and squiggly lines before bed. 

Overload, Honestly.

I returned to work after months of my work being closed due to the pandemic. It was a rough quarantine for me. It began with being sick with COVID-19 for nearly two whole months (likely prolonged due to my autoimmune conditions and immunocompromised status), then my cat, who I’ve loved and cared for since the very day he was born, cared for through illness and nursed back to health after injury, passed away suddenly. I had him for twelve and a half years, my entire adult life. I don’t think my heart will ever heal. He was an indescribable source of comfort for me. (Going through that loss is a subject for another post—one I feel is important to discuss because of the ways my Autistic brain processed the grief in its acute stages—yet another subject there is close to nothing written about.)

With the stress of living through a pandemic, falling ill, losing my fur-child/my entire heart, being forced to return to work full-time with zero notice, with a significantly weakened, already-compromised immune system, in a hotel, serving guests who feel it is safe to travel and who treat the state and county laws of wearing facial coverings like mere suggestions or political games, and I’ve lost complete track of this sentence by now. The length and content is overwhelming, and I do mean that in more ways than one. With all of those factors, my ability to function has drastically suffered. The threshold for what I can handle before experiencing overload has lowered by a significant amount.

I come home from work every day and experience a full-blown meltdown. I come home so overloaded I cannot even stand being talked to or touched by my fiancé and it is hard. He is the most caring, understanding, supportive man, and I am so unbelievably lucky, but watching me suffer is incredibly hard for him. Especially when there is nothing he can do about it, because nothing helps. By the time I get home from work, all sound hurts. I have synesthesia, and sound causes me to see flashing lights and experience physical sensations (like electric shocks) all over my body. The more overloaded I am, the more pain it causes. So, not only is the sound overloading, but the flashing light and the feeling from the sound is overloading, so the amount of overload I experience increases at an exponential rate. It’s hard to break the cycle once it’s that far gone.

For me, a meltdown can happen a few different ways. Sometimes it’s hysterical crying, sometimes its hysterical anger.  Usually, it’s the angry type. Interestingly, I’ve spent my life in therapy learning coping mechanisms for my meltdowns, it’s just no one ever knew what caused them. Most of the time, I am able to exercise some amount of control. I scream into pillows at the top of my lungs, punch pillows, throw pillows, kick pillows, pound on the bed with my fists, use a pillow and beat it against the wall, or the floor, or another pillow… most of the time. These last few weeks my pillows have taken an incredible beating, but there were a few times I lost control. One night I collapsed to the floor and started hitting myself on the head with my fists. Another night, I started pounding on my legs while I sat on the couch. In these moments, I don’t even know that I am doing these things. I only become aware of it because my fiancé says “HEY! Stop!” In these moments, his voice brings me back to myself and I can start pounding something softer, like the mattress, or a pillow, or a couch cushion. 

Though my fiancé is as supportive as they come, I hate that he has to see me like this. Prior to the last few weeks, throughout these 32 years my meltdowns have happened on occasion. Now it’s daily and I feel broken. I want to be clear—I am not inherently broken, but I feel like the outside world is breaking me. The outside world has always seemed brutal. There were always certain challenges I faced. It just wasn’t hitting me as hard before the pandemic—before everything I’ve gone through since March. Before my heart was shattered, I had more strength. Now when I get home from work and I need my kitty, I have to go into my bedroom and lift his little box off of its spot on my nightstand. Ill lay on my bed and let his ashes rest on my chest the way he used to, and stroke the spot on the box where his name is engraved. I lost him three months ago, but somehow it hurts even more now because I just need him so much right now. He was always there for me no matter what. Really, solidly there. I haven’t learned how to function without that yet.

I’ll say again: I want to be clear. I didn’t write this post to throw myself a pity party. This pandemic has been hell for me, but I know it’s been bad (or worse) for others. I thought I would start to feel better and more like myself once I could get back to work. Heck, I was actually really excited to get back to work. But given the pandemic and my new additional challenges with illness and loss, it turns out returning to work has only taken me to the next level of hell—one from which there seems to be no escape. But, still, I am moving forward. I am continuing with my new therapist/specialist, and I have reached out to a few psychiatrists to see about getting an assessment. (That is a first for me. I’ve never seen a psychiatrist. But from where I am sitting… I think it’s time to try.) I just can’t do it on my own right now.

I want to be honest here. I want to be honest in my experiences, even when they are not great ones. Because that is what I want to read. I start writing every post by asking myself “What do I feel like I need to read about right now? What would help me in this moment?” My assumption is that I am not the only one who has ever looked to others’ experiences for help and not been able to find them. I appreciate all the positive stories. All the success stories. All the encouragement. All the everything that’s out there. I love reading about the good moments, but I need to read about the bad moments too. That is why I am writing this. I am writing this for the others who are sitting in the dark, feeling battered and broken, and in a constant state of overload. I want whoever finds and reads this to know that they are not alone. That we are in this together. And that we have nothing to be ashamed of. Prior to my diagnosis, I spent a lot of my life ashamed. Since my diagnosis, I reject that feeling. It’s a feeling that is hard to beat, but I will beat it (with a feather pillow, if needed).

I returned to work after months of my work being closed due to the pandemic. It was a rough quarantine for me. But coming out of quarantine has been rougher.

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. 

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.