An Essay | Explaining the Autistic Mask

Explaining the autistic mask in one essay. Is it impossible? Sure feels like it from this end. Am I still going to do it? Hell yeah, I am.

To preface, I’m explaining my mask and my insights of that mask as an adult woman who was diagnosed at 24 years old. Every autistic person is different: an individual who experiences their autism in their own ways both internally and externally. Many of our experiences are similar and we can often relate to one another, but please do not take this explanation as absolute fact for every single autistic person. Auties reading this, feel free to sound off in the comments if you relate or differ; let us know.

Also, in much of this you may feel like I’m explaining the mask in a positive light because I am. Don’t worry, I eventually acknowledge that it’s a way to hide our autistic characteristics from the world to make other people comfortable, and I don’t think we should have to do that. But my mask is a part of my autism and of me, so I don’t think its usefulness should be ignored either.

Okay, let’s get on with it.

 

 

What is the mask or masking?

Masking is a term adopted by the autistic community to explain the persona we adopt in uncomfortable or unfamiliar situations. Our definition of an uncomfortable situation can very much differ from a typical person’s definition; it may even differ from autie to autie. An uncomfortable or unfamiliar situation can also cover a prolonged amount of time—like the beginning of a new relationship, traveling with people, or a dramatic change in lifestyle or routine—and the mask will sometimes stay on for that entire duration.

This mask is learned throughout the course of an autistic’s childhood and life through experiences in which their autistic characteristics were reacted to in some way. For example, my autism makes me less likely to answer questions I either don’t think need answers or don’t have the mental energy to answer at the time. Unfortunately for the people in my life, that sometimes includes things like “How was your day?” Now, if a typical adult asks an undiagnosed autistic kid, “How was your day,” and that kid doesn’t answer, they’re likely going to be reprimanded or at least prodded until they do answer. That’s a learning moment that helps develop the mask. Over the course of time, patterns are learned. I found out I can answer, “It was good” even if my day was terrible, and the conversation will probably end quickly and easily. These patterns turned into scripts that make day-to-day social interactions, conversations with grocery store clerks, and small talk easier to navigate. Because, in case you didn’t know, saying I’m good when I’m not good goes against every autistic wrinkle in my brain. My authentic response would be to not answer if I didn’t want to go into it or to tell you the truth.

As you can hopefully see at this point, the mask is an extremely useful tool. It can help me navigate day-to-day experiences like elevator pleasantries at work, checking out at the grocery store, random conversations with strangers, and greeting people as I come in and out of the gym. Because (I’m going to interject here with a reminder) I’m autistic. That means my social skills were developed differently than is normal, and according to many typical people, they were developed poorly. My brain unmasked does not automatically respond in ways that would allow me to painlessly get through elevator pleasantries at work, checking out at the grocery store, random conversations with strangers, and greeting people as I come in and out of the gym. But with the mask on, my brain is essentially on supervised autopilot: picking responses for me because it recognizes a pattern, or mirroring the tone, responses, and body language of the other person.

And that brings us to mirroring. Mirroring is when one person either consciously or automatically copies the actions and energy of the person they’re interacting with, and it’s an enormous part of my mask. When I’m masking and mirroring, it’s always automatic; if I tried to do it consciously, I’d undoubtedly mess up by making my brain focus on too much at once.

While I’m mirroring, I’m mimicking the other person or people often down to the body movement. I say yes to things they say yes to, I laugh when they laugh, I smile when they smile. Are you seeing any possible problems yet? We’ll get to those later.

For the most part, mirroring helps me navigate social interactions beautifully and often come out the other side with glowing reviews of my personality. People instinctively love people who are like them, and that’s why mirroring is such a successful tool. But at this point, I feel it’s necessary to reiterate, one, that it’s not the authentic me, and two, that I do not do this consciously in order to manipulate people; I do it automatically in a brain that’s functioning in survival mode to navigate a social interaction without being ridiculed, acting awkward, or utterly failing. That may sound dramatic if you’re not autistic, but it’s true.

To summarize myself in my mask, I’m often very much like the environment I’m in or very similar to the people I’m with. I’m usually high energy, extremely agreeable, quick to laugh, and very smiley. These are all patterns and tools my brain learned that successfully help get me through social interactions. And please understand here, masking does not mean I’m having a terrible time. Some of my most entertaining memories are from parties or moments or events where I was absolutely masking. I had a great time; I’m glad I went; I was still myself because my mask is part of me as an autistic person, and I don’t regret any of it. But there are negatives, and it’s time to get to those.

 

 

So, why is masking bad?

I’m going to start this section with a limp, “It’s not all bad.” Like I said, masking is a useful tool that helps me get through day-to-day interactions and uncomfortable or unfamiliar situations in ways that aren’t painful for me. Buuut masks—especially masks on undiagnosed autistics who are unaware of their masks—can be dangerous. More on that later. Speaking from experience, autistic people often adopt these masks to hide their autistic characteristics, and that’s exhausting. We shouldn’t have to do that. Period. But we’re not the only ones who do.

To create a relatable comparison for almost every human—typical or atypical—imagine you work a job that requires you to work face-to-face with customers. We’re talking retail, restaurant servers, baristas, sales, whatever. Imagine you’re face-to-face with a customer and think about the voice, the expression, and the persona you put on. You’re probably cheerier than normal, more agreeable; you’re laughing at things you don’t think are funny, right? Now imagine you have to work a full shift with a constant customer service mask for eight hours. At the end of that shift, your brain is noticeably tired—much more than it would be if you’d been kickin’ it with your friends all day.

That’s essentially the autistic mask. But the autistic mask comes on much more often than a typical person’s customer mask (or family dinner mask or friendly neighbor mask, whatever). For some auties, it can come on every single day, and, even if it’s a useful tool, it’s going to drain that person’s energy to do other things and to navigate other interactions. It is exhausting to act in a way that is inauthentic to who you are. And the huge problem with a mask draining my energy is that my energy is already significantly more affected by typical, everyday experiences—like fluorescent lights and unexpected changes to routine—than a neurotypical person’s. A typical person puts that customer service mask on and that’s the thing that made them tired; an autistic person puts that mask on and they still have to navigate one hundred more energy-draining things before going to sleep at night. That’s the equation for an autistic meltdown.

This brings me to a mildly painful experience I’ve had more than once in my life, all pre-autism diagnosis. That’s long-term masking at the beginning of a new relationship. In case you’ve never been in one, the beginning of a new romantic relationship is filled with unfamiliar and/or uncomfortable moments; I mean come on, it’s a completely unfamiliar human you’re trying to get to know and be around a lot. Autistic or not, that’s difficult to navigate. 

Before I was aware masking was a thing or that I was doing it, I had multiple relationships start to hit pain points because we rushed into a relationship while I was still masking, they got to know that Sabrina for several months, then I finally got comfortable enough to take parts of the mask off. It can be understandably disorienting to go from dating an extremely agreeable and high-energy Sabrina who is very much like you to the more authentic and often very tired Sabrina who likes World War II history and binge-watching obscure YouTube channels. Now more aware of both my autistic characteristics and my mask, those things come up much, much earlier in any relationship—romantic, friendly, or otherwise. And now, I am much more comfortable being my authentic self in a wider variety of situations. 

But masking isn’t just the result of mildly painful memories. As I’ve hinted at multiple times, masking can be dangerous both for mental and physical health reasons. As an autistic person who got a diagnosis as an adult, I grew up autistic without knowing I was autistic. This means much of my personality was built under the mask without knowing that was happening. I learned speech patterns and conversation scripts; I learned the phrases and personality traits people did react well to, and I adopted those; I learned people would think I was looking them in the eye if I looked at their mouth instead; I learned stimming was weird and I shouldn’t do it because I’d get laughed at; I learned I should be and dress and act this way because then I would fit in or maybe even be applauded; I went along with whatever my friends said or did because I was mirroring them.

Doing these things and repressing others (like stimming) are all parts of masking. When I got my autism diagnosis, I got the chance to see the mask I was wearing and, in time, find out who I am under all these learned patterns. If you can’t tell from the WWII or YouTube comments, I’m a pretty cool person.

 

 

Are you saying autistics should mask?

I mean, kind of. But wait. Autistics, I’ll speak to you directly: do whatever you want. If masking means you can get through meeting your boyfriend’s family for the first time or check out at the grocery store quickly and not memorably, do it if that’s what you prefer. Use it not because you feel like you have to, but because it’s part of you and you can. It’s like a god damn superpower. If you would prefer that typical people suck it up and deal with your atypicalness, do that instead and throw that mask away.

Just know that taking the mask off is easier said than done. Like I already explained, mine is automatic and sometimes very helpful. But it was also on for what is currently the majority of my life, and I’m still figuring out who I am under it. I don’t know yet how to make that mask stand down during times of struggle, and there have been multiple times even post-diagnosis that I’ve been grateful for it.

Yes, my mask is a way to hide my autistic characteristics from the world so other people are more comfortable interacting with me. No, I don’t think I should have to hide my autistic characteristics to make other people happy. And I don’t anymore. Since my diagnosis and better understanding of myself, I stim when I know it will help me, I talk about WWII history when I’m excited about it, I say things my friends and family don’t always understand. But also, confrontation/explanation/questions/comments with strangers or acquaintances can sometimes be more exhausting than just breezing through the interaction with a mask. 

So, am I saying autistics should mask? I’m saying do whatever makes you happy and comfortable in the moment. I’m saying do whatever the hell you want.

 

 

Is it over? I have more questions.

That’s cool. There’s an email on this website somewhere. You can always send questions there. The comments are also open. If you know me, send me a message, a text, a DM.

I write these things because I want diagnosed, recently diagnosed, undiagnosed auties to get the chance to better understand themselves, to be safer and happier. I want neurotypical people who don’t share these experiences to better understand us so they can be happier too. If you’re not autistic and you’re reading this, I’m very happy you’re here. You too, auties; I’m always happy you’re here.

An Essay | What it Feels Like for Me, an Autistic Person, When Plans Change

According to things I’ve read and tried to understand from others, a neurotypical person can maneuver a change in plans or routine successfully and even without realizing that’s an accomplishment.

For example, you’re going out to your favorite brunch spot with a friend, but when you get there, it’s too full. You decide to go somewhere else. You know the area so you suggest a cafe you’ve heard about before; you follow them on Instagram and it’s within walking distance. You walk there and go inside, but it turns out there’s nothing on the menu that looks good to your friend. He suggests a spot down the road; it’s close but you’ll have to drive. You drove separately but driving isn’t difficult for you. You get there, you wait ten minutes to get a seat, and you have a great brunch.

I’m autistic. Here’s a breakdown of that same story if I’m the main character. The short explanation is it’s not easy and, sometimes, it doesn’t even end up being fun.

It can be fun with the right understanding and accommodation; to find out how to make that happen, read all the way through to the bottom section.

First, the story.

 

Let’s Do Brunch

Oh boy, we’re going to brunch. We made these plans two whole days ago, it’s a place I’ve been before, and I’ve already had time to look at the menu online and decide what I want. For an autistic person like me, this is the perfect setup.

We drove separately, but we arrive at the same time and I’m able to park in a spot I’ve parked in before. It was easy to find and to get into, and I’m not preoccupied with getting towed. Sweet.

As we walk to the door and find our way through the crowd of people waiting outside, my mask is already on. This mask takes a lot of energy from me, but it comes on automatically and out of my control when I’m navigating most social situations. There are times I’m grateful for it because it can help me navigate social interactions quickly and without incident; it can make me feel and appear confident in unsettling situations, but it can also make it more difficult for me to communicate honestly. That can be dangerous. Thankfully, brunch isn’t often dangerous.

Walking up to the door parallel to a busy street, I hear, see, and focus on dozens of things simultaneously: the rush of cars driving by, a woman laughing, keys falling against the cement, a dog barking, music I recognize from a car driving by, a conversation about dog training which completely steals my attention to the point that I lose my bearings and bump into a stranger. Add physical touch to the list of senses being activated.

I need to make this clear. These aren’t noises and sights I simply know are happening. My brain focuses on each one individually. It jumps from item to item one by one and doesn’t move on from that item until I understand what it is. If it gets caught up on something strange, it’ll stay on that sight or sound longer than the others. This makes focusing on things I’m supposed to be focusing on—like my walking path, a conversation with my friend, or how to put one foot in front of the other—difficult and slow.

As we get through the door and squeeze by the people to the hostess stand—all the while exchanging the appropriate manners—I’m introduced to a whole new round of sounds and (super fun) a darker, indoor area directly after being outside in the sun. Can’t see, can’t hear.

But the mask is on! I successfully push my body forward walking sightless into the dark while my eyes adjust. With my mask on, I’m able to take the lead and tell the hostess, “There are two of us.” She looks at her chart and tells us the wait is an hour and a half.

Suddenly, all the new sounds, the dark setting, and the strangers around me take all my attention; they’re all I can hear as my carefully executed plan slips out of my grasp. My brain jumps from sound to sight to sound to sound to sight. But the mask is still mostly in control, so my reaction is managed; my face is blank. However, my brain can’t maneuver around this quickly enough to speak and respond, so I look to my friend. Literally, I just look at him. He asks me, “Is that too long?” But I can’t answer. An hour and a half didn’t fit into my plan; my brain is still trying to reset after getting bumped off course. I just look at him, blankly. He tells the hostess, “Thank you, we’ll go somewhere else” then puts his hand on my back to direct me back outside.

On the way out, I feel his hand, brushes against strangers, the sun in my eyes, the mental energy it takes to get reoriented outside, and all the sounds I’ve already mentioned. They’re still talking about dog training.

Now, we’re outside again, but we’re not away from the crowd before my friend asks, “Where should we go now?” It’s not pointed or annoyed; it’s casual and fun. But my brain hasn’t caught up with the present yet, so I’m not able to push through all this sensory stimulation as well as I was before. My brain needs to come up with a new plan and new steps to get there, but it can’t do that with all this distraction. I say “I don’t know” without looking at him and keep walking. I need some slow breaths but it feels like, if I slow down or stop, the whole world will explode. Anxiety is built up in my chest and I feel it there like physical pressure. So I keep speed walking, practically running away from the disorienting experience, sensory stimulation, and executive dysfunction.

As we keep walking and get away from the crowd, I see a cafe across the street; I follow them on Instagram, and I’ve had plans to go but never actually made it happen. “I know a place,” I say. And my friend says, “Let’s check it out.”

When we get there and get inside, it’s very small and doesn’t look promising as a full breakfast spot. But my brain has already slid into plan B: it adopted this old plan to go get coffee at the cute cafe I follow on Instagram. So, while it’s not plan A, it has been researched and it’s likely the most comfortable backup plan for my atypical brain to navigate in the midst of chaos.

As I look over the menu, I know this isn’t going to be enough for my friend. It’s mostly coffee and snacks, but my body can oblige as long as my brain stays comfy. I wait for my friend to tell me this isn’t it, chief. And while I wait, anxiety continues to build up in my chest.

All the while, I hear coffee being ground, dishes being dinked, and more conversations being shared. I see a whole new indoor setting, cars and people going by through the windows, and new things to investigate on the shelves. I note which coffee they use, that they sell flowers, that their walls are a subtle shade of pink, that a couple is on a date in the back, that the barista has a curly mustache and a Vans hat, that they’re hosting a poetry event later this week, and that a stranger over there has a small hole in their shirt.

While we’re at the counter in front of the barista, my friend says, “Let’s go somewhere else; this isn’t enough food.” Unfortunately, this is too much for my brain to manage. My mask slips, and I snap. “Fine, I don’t care.” I say this in a tone that makes it obvious this is not fine and I do, in fact, care. “I’m still ordering coffee,” I say. So, I order coffee, embarrassed and guilty I’ve snapped at my friend in front of this stranger and barista; I don’t want to make either of them upset or uncomfortable. But I order my coffee: a cappuccino, something familiar my eyes and brain recognize quickly amidst the feelings, sounds, sights, and discomfort.

Now, I have the opportunity to sit down and wait for my drink. I fiddle with some succulents on a shelf as a way to stim, ground myself, and find comfort. But by the time they call my name, my brain still hasn’t stopped racing or focusing on every single sound, touch, or sight detail. But still, it’s time to go.

Outside the cafe, my friend says, “I know a place; it’s just down the road.” I nod and turn in the direction he pointed, but he interjects, “Oh no, we’ll have to drive.”

All the way back at place number one, my extensively-prepared plans were destroyed. Then, my comfortable plan B didn’t work. And now, the situation is not only completely out of my control, it’s been explained to me with no details. I have to get from here to I don’t know where in my car and I don’t know where it is, what the parking situation is, if it’s going to be crowded, what’s on the menu. I have to get from here to plan C without a plan. And my brain can’t manage the communication, the emotions, the sensory stimulation all at once.

“I don’t care where we fucking go.” I yelled this. It came out much louder than it had been in my head. To be fair to my head, it didn’t have time to register these words before they were coming out of my mouth.

My friend looks hurt; I see this and realize it, but my brain doesn’t tell me what to do or say next to make it better. My social development is delayed which hasn’t allowed these patterns to be recognized and understood as readily as a typically developed person; especially in the midst of autie chaos and/or low energy, I don’t have the brainpower to figure out what I need to communicate in order to rectify this in the moment.

There are cars driving on the road, music blaring somewhere, a group of people walks by behind me. I’m anxious and, now, I feel my guilt like physical pain. I say, “Let’s go,” and I head toward my car. If my feet don’t move me out of this spot right now, I’ll meltdown in the middle of this public sidewalk.

My friend has been here before. He realizes suddenly what’s happening but that doesn’t mean it’s comfortable for him. At this point, he knows I’m struggling but now he’s a little stung too. We haven’t discussed the ways he can help me in this kind of situation, so he doesn’t know what he’s doing wrong—or if he’s doing anything wrong. He says, “Just follow me there, okay?” And we both get in our cars.

 

Can We Slow Down, Please

I’m gonna stop us right here and summarize the rest because, honestly, my brain is getting worked up just narratively reliving this morning that actually happened about a year ago. We got to the restaurant, they had a parking lot with a spot for me, we didn’t have to wait for a table, and we got a booth which helps a little to shut out visual and auditory stimulation. By the time our food arrived, my brain had finally caught up with the present; I was able to apologize and explain myself. My friend understood. We ate, we laughed, we went our separate ways, I laid on the couch for the rest of the day with aches in my arms and legs.

This was not an easy day for me. As a result of this hour and a half, my energy was wiped for the entire weekend. My brain is racing even now trying to catch up with all the details. Because I’m autistic. My brain operates differently than a neurotypical brain and that’s what this story was about. My senses process differently, my executive function does not function at a typical pace, and my social skills are atypically developed.

These three categories of difference affect every single moment, thought, interaction, and reaction to the people and world around me. Sometimes, it’s too much, but I can navigate it with a little help and a lot of understanding.

 

I Need a Little Help From, Like, Everyone

If there’s one certainty in all of this, it’s that these things are going to happen inevitably. Plans will have to change, they won’t work perfectly, even plan Bs will fall through. Usually, certainty is a comfort for my autistic brain, but this certainty is not; instead, it’s a huge cause of anxiety. But while changes of plan may sometimes be unavoidable, there are ways to make them more manageable for me. To provide a few examples, I’ll edit this story in a few places with the things, in retrospect, I wish had happened.

As preamble, my friend was not in the wrong at any point. We hadn’t discussed ways he could help me manage stressful situations; so when I say phrases like he could have, I mean he could have if I had communicated this beforehand. When I say phrases like my friend could have, I mean you can do this in the future for me or for your own autistics. After all, we need a little help from, like, everyone.

First up, I should have paused once we had left the first restaurant and escaped the crowd. If I had turned down a quiet street—away from the noise of the main road—and sat down to breathe before speaking or taking any steps toward plan B, my brain would have had more and better time to catch up with the situation. Then, it would have been set up to more successfully navigate the resultant emotions, the sensory stimulation, and the ongoing communication. At the time, it had felt like stopping would have caused a meltdown, but it wouldn’t have; that was the anxiety talking. If my friend had stopped me and insisted we make a snap decision, I would have had a meltdown. I would have had a meltdown if we couldn’t get out of that crowd. I would have had a meltdown if I also tripped and fell on top of everything else. But pausing the speed walking to regroup in a quieter place would have helped me, and it would have communicated to my brain that it didn’t need to solve this problem right away; there’s always time to breathe, especially if it’s just brunch. As the “my friend” in the future, you can encourage your autistic friend to pause. Tell them to come with you, clearly communicate where and/or why, and find them a place to sit down; then, don’t rush them into speaking or responding to you in any way. Just let them breathe and probably stim.

This brings us to the second edit: the stimming, or lack thereof. I stimmed for comfort once during that hour and a half and it had a deadline that was out of my control. I had to stop touching the succulents when my cappuccino was ready so I could go pick it up and leave the cafe. If the succulents were my only stim source, my friend could have helped by going up to get the coffee for me so I didn’t have to stop. If I had planned ahead, I could have brought something that would help me stim in case of emergency; often that’s my water bottle but I couldn’t take it with me into the restaurant. So, I need a backup stim.

Which brings us to the third point—a point that probably should have been the first. Plan A planning should include a backup plan B with steps clearly laid out. If our third restaurant, the one that finally resulted in a successful brunch, had been discussed beforehand, the entire breakdown and energy drain could have been avoided. When we were told the wait was too long, my brain would have automatically switched tracks onto a pre-planned and already built-out plan B. Stress-free.

Third edit, my friend could have driven us both to plan C. Driving combines sensory stimulation and executive function into one nightmare task. If I don’t know where I’m going, what to expect, or where to put my car when I get there, it’s a lot worse. So, if your autistic friend is on the verge of a meltdown and you can help keep them from getting behind the wheel of a car, do it. Carpooling is better for the environment anyway, right?

 

But What Are My Takeaways

Every autistic person experiences their autism differently. Sometimes, all this happens internally and you don’t even know your autistic friend was having a hard time until they get home and painfully meltdown. Sometimes, they can’t make it to plan B, and they go home early. No matter what happens, as our neurotypical buddy, don’t get mad, be patient, and don’t try to force communication or decision making.

If you’re the autistic person, communicate as much as you can when you’re not in the middle of autie chaos, so that chaos is more manageable for you and for your loved ones. It’s super hard sometimes to think, to find, to articulate the things that help you, but it’s impossible to do that when you’re in the middle of a shutdown, meltdown, or burnout.

I hope this helped.

Check out 20 Characteristics of My Autism, How to Help Me, an Autistic Person, Navigate a High-sensory Environment, and No, Not Everyone Is on the Autism Spectrum.

An Essay | No, Not Everyone Is on the Autism Spectrum

Everyone is not a little bit autistic, but everyone can relate to autistic experiences. Autism is a developmental disorder made up of human characteristics. So of course, you can always or occasionally experience a characteristic of autism and, yes, you can relate to an autistic person: that does not automatically mean you’re autistic.

Autism is a developmental disorder made up of human characteristics in three categories: communication, sensory processing, and executive function. To be on the autism spectrum, you experience characteristics in all three categories to a degree that affects your ability to function on a daily basis in the neurotypical world we live in.

 

The Categories of Experience

Executive function involves self-regulation skills dependent on three types of brain function: working memory, mental flexibility, and self-control. These functions are highly interrelated, and successful executive function requires them to operate together.

Sensory processing includes all information taken in through the five senses. If you experience sensory processing disorder or difficulties, you experience one, a few, or all five of the senses differently than is typical; they can be highly sensitive, extremely insensitive, or switch between the two.

Communication struggles—or decreased social development—refers to atypical language development, difficulties understanding what others say, and difficulties communicating nonverbally—through hand gestures, eye contact, facial expressions, body language, and the like.

There are a lot of seemingly miscellaneous characteristics which actually fit into these categories too. Stimming, for example, is a way autistic people add a little control and calm to an overwhelming sensory environment. And obsessions, for example, are a result of executive function differences.

As an example of all three, I don’t use typical voice inflection or tone, I get completely distracted by vacuum cleaners to the point of not hearing anything else around me, and I will not remember instructions, names, or details unless they’re repeated or written down.

For example, I’m nonverbal in certain environments and situations, I stim by pulling my eyelashes out (I’m working on not), and changes to my regular routine can cause complete meltdowns (this includes adding an unexpected person to plans, showing up at my house unannounced, or keeping me from doing the things I do every day, like eating a peanut butter and jelly sandwich and watching Good Mythical Morning).

For example, I can’t accurately read facial expressions or body language, I’m highly sensitive to touch, and I’ll miss meals, showers, and dog walking if I’m doing a puzzle. This last one is an example of an obsession and executive function disorder. You can love puzzles too; you can spend hours on them, but if you can physically step away without significant, sometimes meltdown-inducing mental effort, that’s not executive function disorder. I’ve been forcibly carried away from a puzzle at 3 a.m. by a friend who insisted I get at least a few hours of sleep.

For a longer list of my experiences, I’ll refer you to 20 Characteristics of My Autism.

 

Please Relate to Me

I’m not hopeless—none of us are. My autism affects me in ways that mean I’m still able to have a nine-to-five job, relationships, my own small business, a dog, a rabbit; I pay my bills and I do my own taxes and I travel and sometimes I even do puzzles for just three hours instead of twelve. And even if I couldn’t do those things, I would be able to do others.

I’m autistic. Please, please, please relate to me—whether you’re autistic or not—but please do not tell me everyone is on the spectrum. Please don’t tell me everyone’s a little autistic.

When I hear that, I hear that my daily struggles are daily struggles for everyone. I hear that, since everyone is this way, I should be able to do the things everyone else can do. I hear that I should be able to focus even when there’s a light flashing somewhere; I should be able to make a doctor’s appointment on my own; I should be able to not have a meltdown when I’m struggling to explain something that probably seems more important to me than it should be.

When I hear you say that, I hear you say that my experience is the norm, and it is not. It’s not and that’s why it’s so overwhelmingly exhausting to be like this in a world that was made for people not like me. That’s why I can’t just add a friend of a friend to prearranged plans at the last minute. That’s why I can’t go to clubs or crowded bars or indoor swimming pools without risking a meltdown or a shutdown. That’s why I can’t just stop writing when I’m writing about a topic I care about; it’s not that I don’t want to stop, it’s that my brain will not stop for anything. It’s 2 a.m. right now.

That’s why my world—a largely internal world that does not operate normally—does not automatically fit into a world that is normal.

I learned to love my world, but it is not everyone’s world.

 

But Don’t Invalidate Me

This isn’t exclusionary; it’s realistic. I’m not cutting autistics out of autism diagnoses; I’m cutting non-autistics out of autism diagnoses so our experiences don’t get lost. Because, if our experiences and voices get lost in the crowd, we don’t get the help, the patience, the understanding we need to make it through this world alive and well.

Because that’s the fact: we need more help and extra time and tons of understanding just to make it through the day every single day. From ourselves and from others, we need understanding that our routines are more important than you think; we need help calling the doctor for a prescription refill; we need hundreds of answers to our hundreds of questions, and we need extra time to recover from daily experiences.

Autism is a developmental disorder that affects sensory processing, executive function, and communication which makes me experience the world differently than is typical: in a way that is occasionally too much and completely out of my control, so I meltdown, shutdown, burn out, and retreat for several days to recover from sensory, social, and regular, everyday experiences.

 

TL;DR

Sometimes, I can’t speak—physically can’t speak—no matter how badly I want to. Often, I think I’ve said something practiced and perfect only to find out it’s been misunderstood. Sometimes, I use the wrong facial expression and convey the wrong emotion. Sometimes, I interrupt uncontrollably to say something that isn’t related to the conversation—even, or especially, during the conversations I want to have.

What I’m trying to say is communication is hard for me. That makes communicating the ways in which I relate to you difficult as well, but connection and empathy are not hard. They’re automatic. If you’ve heard autistics can’t connect or empathize, then you’ve heard it from someone who hasn’t really tried. I want to connect with you; I want to hear you relate to me, and I can relate to you too. But to do that, I need you to validate my daily experience. Don’t tell me it’s like everyone else’s, because by definition, it is atypical.

And, hey, if you’re reading this and still thinking something like, “I relate to all those things so I disagree; everyone is a little autistic,” welcome to the family, baby, you’re probably an undiagnosed autie.

 

Stay gold,
Sabrina

An Essay | How to Help Me, an Autistic Person, Navigate a High-sensory Environment

In my own brief summary, high-sensory environments are all about unfamiliarity. Since I’m taking the time to write this, though, I might as well actually explain what they are. A high-sensory environment is an environment, room, place, event that is activating a lot of senses at once. This doesn’t mean high-sensory environments are only loud or bright; quiet and/or dark environments can be equally overwhelming when there is a complexity of sounds, a complexity of sights, a complexity of touches, tastes, or smells.

For example, a crowded restaurant is a high-sensory environment: silverware clinking, people talking, music playing, art on the walls, TVs playing, people walking around. A movie theatre is a high-sensory environment: a large screen with loud noises, people whispering, phone screens lighting up in the dark, people coming and going, people moving in their seats and making noises with snacks. A gym is a high-sensory environment: weights clanking, people talking, people walking by, music playing, even people touching to spot, start a conversation, or get by.

Sensory processing difficulties are a hallmark of autism which means high-sensory environments can be more difficult to be in, to be in for long periods of time, or to be in when energy is low.

The reason I mentioned unfamiliarity at the top is that I can familiarize myself with some of these environments and navigate them more easily. The regular gyms I go to have become familiar enough to navigate successfully the majority of the time, as have familiar restaurants, movie theaters, events. When I’m invited to a different gym, taken to a new restaurant, or asked to attend an event in a place I’ve never been, a wave of anxiety will undoubtedly arise before and a wave of unfamiliar sensory experiences will be experienced while there.

That doesn’t mean I can’t do these things and that doesn’t mean familiar environments will always be comfortable: they’re still high sensory. If I have a high amount of energy, if I have a familiar person to go with, if I have enough support, I can usually successfully go to new places and do new things. But if I’ve done a new place once already this week, chances are I’ll turn down another until I’m recovered mentally and physically.

In the rest of this personal essay, I’ll list the ways you can identify sensory overload in me and some ways to help me navigate or escape an environment in which I’m struggling.

 

How to Tell I’m Overwhelmed

Sensory processing takes a lot of mental energy from me and from many autistic people. This means, in many cases, I don’t realize I’m being overloaded or overwhelmed until it’s too late to recover in the moment. Because my brain is distracted so much by sights, sounds, touches, tastes, smells in ways that don’t affect neurotypical people as severely, I will have a harder time also being a good conversationalist, being communicative, staying focused, noticing when I’m being spoken to, or communicating that I’m uncomfortable. 

That’s why I’m including these tells: because sometimes I need help from someone who can recognize that I’m not okay without me having to say it.

 

1. I’m repeating responses or statements

Repeating the same responses or statements in a conversation means I may not have the energy to come up with new responses during a conversation or interaction. It means I’m using scripted responses I’ve heard from others or have been successful with in the past to coast through an interaction when I’m uncomfortable, either with that conversation or in the environment (or both).

 

2. I’m stimming

As an autistic person, I stim for a variety of emotional reasons—some of which are a result of positive emotions. However, there are a few self-stimulatory behaviors I seem to do only when I’m uncomfortable, either mildly or severely. Mild discomfort stims include clicking pens, opening and closing my water bottle, tapping fingers; a lot of these represent both repetitive sound and repetitive touch which provide me a sense of control and give me something close and predictable to focus my senses on. More severe discomfort stims include rocking back and forth while sitting or standing, rubbing my fingers near my ear, and lining up objects in straight, uniform ways.

 

3. I’m not hearing or comprehending well

I may be asking over and over again for a question, instructions, or a statement to be repeated. This is common for me in a lot of interactions because I struggle with verbal and auditory communication more than a neurotypical person does. However, if I’m having to ask more than usual or I’m not responding at all, it’s likely my senses are overloaded. I may also not be responding because I don’t hear or understand that they’re directed at me when I’m distracted by so many other things.

 

4. I have a headache or body ache

A common characteristic of autism, my body reacts to social and sensory stress through physical pains in my head, arms, and legs. Headaches are often pains I can manage as a simple warning to give myself a break, but limb pains often serve as a more severe warning. These can start mild but sometimes get so severe that I can’t walk if I don’t immediately rest my body and brain. No matter what level of pain I’m currently in, it means I need to rest and recover as soon as possible—and get my hands on some Advil immediately.

Also note, these limb pains can start after I leave the high-sensory environment, after a uniquely exhausting day, or after a day where my routine has been changed. My body is still stressed prior to recovery and will likely hurt.

 

5. I’m cold

Keep an eye out for goosebumps; this is a telltale sign that something is off. An actually cold environment counts as another sensory stimulation which can make things worse, but my body also has a hard time with temperature regulation in general—a common characteristic of autism. If my brain and body are overloaded with sensory stimulation, social communication, and/or activities related to executive function, it stops adequately regulating temperature and I’ll often end the night physically shivering no matter what the actual temperature of the environment is.

 

6. My voice gets robotic

This is a difficult one because, on its own, it doesn’t necessarily mean I’m going into sensory overload. My intonation and inflection often don’t match normal patterns; this is common in autistic people. However, if my normal tone of voice changes or gets flat in combination with some of these other tells, it probably means my senses are getting overloaded.

 

7. I’m looking at my phone

I don’t typically do this in social situations unless prompted. So, if I’m looking at my phone for longer than 10 seconds or so, or if I’m on it without explaining why, it means I’m seeking a distraction from my environment. This is not a permanent solution to a high-sensory environment, because the phone itself is a high-sensory object, and it will likely give me a headache.

 

8. I’m itchy 

Another symptom of stress and anxiety, I often get extremely itchy when I’m in a high-sensory environment. I might scratch my head repeatedly or feel itchy on various parts of my body all at once. At this point, I typically realize my senses are feeling overloaded, but I still may not be able to figure out how to help myself in the moment.

 

9. I get more impatient and snap

Whether to a loved one, to an acquaintance, or to a stranger, I don’t snap because I’m mad at you, because I’m annoyed by you, or because I dislike you. Usually, I snap because you’re doing or saying something I can’t handle in the moment due to too much sensory input. This could be you asking me a question I can’t answer, talking about something I can’t focus on, or touching me when there’s too much sensory input already. The most unfortunate thing about this is that, because of masking (another energy-draining characteristic of autism), I’m much more likely to snap at someone I love than at a stranger. That’s because I’m more comfortable being myself around you—I’m more comfortable taking my mask off—which is really a great thing, but is also very understandably upsetting.

 

10. I close my eyes

At this point, I’m definitely conscious of the fact that my senses are being overloaded, but I still may not be able to take the necessary steps to get myself out and recover. Often, I’ll close my eyes and position my head either up or down. If I also put something over my head, like a shirt or blanket, things aren’t getting better until I leave that environment. At this point, there’s nothing to do but leave: to go to a sensory-safe home base to recover.

 

How to Help

Especially in social situations or in higher pressure environments, a lot of the help I need in high-sensory environments is about reminding me I can do these things, showing me where or how I can do them, or giving me permission to do them.

 

1. Insert familiarity

Whether in an already familiar or a new, unfamiliar environment, inserting familiarity of any kind will provide comfort. This can be a familiar person, a familiar sound like music in headphones, or a familiar object to hold like my water bottle.

The familiar person can be the most effective, but my group of comfortable, familiar people is a small one, including several friends, family members, and acquaintances I know as quiet and gentle. If you’re not that person, it’s important not to force it when I’m already in sensory overload. If you are that person, I’m probably already clinging to you like the annoying floaty in your eye. 

A familiar person also means one familiar person. So, if I’m in a group of familiar people but start to get overloaded in the environment, I may step away. To help, the best move is for one of those familiar people to come with me, stand or sit near me, and either be quiet or speak in a calm tone of voice.

 

2. Give me permission to be atypical

There are a handful of things I know will help me calm down in a high-sensory environment, including some of the things mentioned above like stimming. However, when I’m getting overloaded, I may not understand how to do them—whether that’s a social issue and I don’t want to appear strange or an executive function issue and I don’t understand what steps I need to physically take to de-escalate.

So, suggest it yourself or ask if I’d like to do something from this How to Help section. Invite me to step out of the room; let me know I can put my headphones on if I’d like to; ask me to sit down with you; hand me a familiar object or hand me a piece of paper to fold as a means of letting me stim. This subtly gives me permission to do the things I need to do and helps kick start the moves that need to be made so they can happen.

 

3. Help me get outside or to a quiet room

Being overloaded in a high-sensory environment may mean I just need a short break from it. If that’s the case, help me get away. Because of social communication issues, I may not know how to excuse myself from a group or get out of a conversation; I may even be struggling to make my legs take me out of the room as a result of executive function problems, so help get me out of there any way you can. Make up a weird excuse or just walk out with me. Then, help me get outside if it’s quiet, to the bathroom if it’s not crowded, or any quieter and less overwhelming environment where I can breathe, calm down, and recover.

 

4. Find a place for me to sit down or lie down

Sitting down helps calm me down and often offers built-in stim opportunities, like lining up objects on a table or fidgeting with clothing or objects more easily. When sitting down, I’m able to claim my space and get more comfortable in it—rather than standing which suggests to me I may have to move at any moment.

Laying down flat on the floor is one of my most calming options, but I don’t often do this unless I’m in an extremely familiar and low-stress environment, like my regular gym, my house, or a friend’s house.

 

5. Let me leave or leave with me

If nothing’s working and sensory overload is getting worse, there’s nothing left to do but leave. If you need to stay, give me permission to leave without making me feel bad and make sure I know all the steps to get out and/or home safely. If you can leave with me, let’s get the hell out of here. Help me navigate goodbyes or say goodbye for me, make sure I have all my things (because remember, my brain isn’t functioning well and I may be more forgetful), help me find the exit, and help me get home or to a comfortable home base.

 

Things to Remember

Whether you’re reading this because you know me, because you know an autistic person and want to know them better, or because you’re autistic yourself, thank you. I hope it provides some insight that helps and that you can relate to.

Remember, though, autism is a spectrum. Every autistic person experiences their characteristics in unique ways and to varying extents. For example, my smell and taste sensitivity isn’t very severe but my sight and sound sensitivity can be debilitating. And the same goes for every executive function characteristic, social characteristic, and sensory characteristic an autistic person experiences.

If you want to read more about those, check out my other essay 20 Characteristics of My Autism. 

An Essay | 20 Characteristics of My Autism

I’m autistic. This is a list I put together to help me explain myself, to organize my thoughts, to help my loved ones understand me, and to spread awareness about what autism is.

When I need to explain it quickly and basically, I often describe autism as a combination of PTSD and OCD. In fact, an autistic adult’s brain functions very similarly to a brain experiencing C-PTSD, and C-PTSD and OCD can even be comorbid with autism, which means an autistic person could experience all three at once. But my everyday experience goes far beyond those comparisons, too, and I’d love to take this chance to scream into the void about it.

Autism affects three main categories—communication, sensory input, and executive function—to a degree that affects day-to-day functionality. We struggle to communicate in ways that neurotypicals (read: normal people) do which leads to a lot of misunderstandings and incorrect stereotypes. We experience the five senses differently than neurotypicals, and our brains aren’t organized in the same ways.

Below is a 20-item list I wrote that covers all those categories. This doesn’t cover everything I experience as a result of my autism, but it’s a start.

Please note that every autistic person has a different set of characteristics. There are similarities by definition, but this is a spectrum disorder and is developed and showcased individually. You know, just like people. 

 

1.

I have Selective Mutism which is an anxiety-related disorder commonly comorbid with autism. This means there are settings and situations that make me unable to speak. I’m not unwilling to speak in these situations, I am unable to speak and often very much want to. Specific settings include when being reprimanded, when feeling too many conflicting emotions, when being physically intimate, or when in a high-sensory environment.

2.

Speaking out loud in any setting and with any person slows my brain down dramatically. This means I need more time than most people to verbally answer questions I’m unprepared for. I may also react to something in a way that doesn’t fit or in a way I wouldn’t normally because my brain and body haven’t successfully communicated yet. So, I may agree to do something before I realize I already had something planned or I may laugh at a joke I don’t think is funny or I may smile when told something sad.

On a related note, I avoid speaking on the phone at all costs. When speaking verbally in person, I’m offered visual cues in addition to the auditory cues which take my brain so long to process. On the phone, I get only those auditory cues which can leave me feeling far too slow and lost.

3.

Communication through writing of any kind (pencil and paper, text, email) is always going to be easier for me to understand and more comfortable for me than verbal. Because my brain slows down for verbal communication and needs more time to process, difficult or emotional in-person discussions are harder for me to manage and get through than a neurotypical person. I may go into shutdown if not given proper time to understand and formulate responses in high-emotion or high-pressure discussions.

4.

I experience autistic shutdowns. These are comparable to a computer overheating; it’s quiet on the outside but a complete disaster on the inside. When in a shutdown, my tone of voice will become robotic without inflection or I may go completely into Selective Mutism, I don’t react to my surroundings or to other’s statements and questions, my physical reaction time gets slower. These are most often triggered by too much sensory input. To recover quickly and efficiently, I need a quiet, dark place with soft textures and a soothing voice (the Headspace app and my weighted blanket are failproof).

5.

I experience autistic meltdowns. These are comparable to a computer completely exploding. Though it may seem like a tantrum or an anxiety attack, it is not; I would never choose to go into a meltdown and always, always, always try to fight them off. These are complete explosions of emotion and they are physically painful. Unlike an anxiety attack, a meltdown is not fueled by fear, but by uncontrollable emotion. Once started, it usually needs to run its course. I often can’t speak during meltdowns which means I can’t articulate what’s wrong. These are triggered most often by getting in arguments with people I love, but can also be triggered by too much sensory input. To recover quickly and efficiently, I need a quiet, dark place with soft textures and a soothing voice (the Headspace app and my weighted blanket are failproof).

6.

I experience physical touch differently than neurotypical people do. This doesn’t mean I can’t be touched, but it does mean I can’t be touched by everyone, in some situations, and/or in normal ways. Physical touch also takes up much of my brain space; this means if I’m being touched, I may not be able to have a complex conversation or communicate effectively. From people I’m comfortable with, I need firm touch and not light touch. This means I may flinch away from a light touch or a gentle hug, but I greatly enjoy a firm touch and a strong, two-armed hug. From nearly anyone, I can’t stand touches to my face at all.

7.

As a characteristic of communication struggles and obsessions/interests, I may not ask on-topic, related, scripted, or appropriate questions during conversations. For example, if someone asks me how my day was, I’ll answer but I might forget to ask them because I either don’t have the energy to communicate as expected or my answer made me think of something else I’m more interested in at the moment. I may also ask follow-up questions that don’t seem related.

8.

I mask instinctively and have not yet figured out how to stop. This means, when I’m not 100% comfortable in a setting or with a person, I mimic the environment I’m in or the person I’m interacting with as a means of fitting in. Often, this means people get an inaccurate understanding of who I am, and I can often come off as completely neurotypical. However, masking takes nearly all my energy; and because I often do it anytime I’m in public, I am often tired and need a lot of time alone to recover.

9.

My tone of voice, facial expressions, and body language often don’t match my genuine reactions, feelings, or emotions, because I feel and express emotions differently than neurotypical people do. Sometimes, I smile when I don’t feel happy or I look bored when I do feel happy.

10.

Daily and weekly routine is very important to me. It helps me guarantee some control in a world I’m not always comfortable in, and it guarantees I’ll find myself in familiar environments with familiar people so I can be as comfortable as possible, as often as possible. Changing my daily, weekly, or planned routine in any way requires a lot of energy on my part and can drain me completely. If I’m already low on energy, a sudden change may cause me to react with anger; I may snap, yell, or cry. I can change my routine, but it’s always easier for me if I’m given advance notice by weeks or days at least.

11.

Once I start doing something I enjoy, I want to continue doing it until I’m finished. This includes things like reading and doing puzzles. When interrupted or made to stop, I may react with what seems like unnecessary anger. However, doing these things unchecked can also mean I miss meals, miss showers, miss chores, delay taking my dog out, etc. so they do need to be checked occasionally.

12.

Like most autistic people, I have obsessions. Mine function as short-lived obsessions which means I obsess over one or two things at a time for a short time then move onto the next. In the past, these have been specific television shows, specific podcasts, specific musicians, World War II history, and others. When in the middle of an obsession, I often over-share about it at every opportunity and am absolutely overjoyed when someone else volunteers to take part (i.e. watch the show I love, listen to the podcast, listen attentively to all my history-related rants and fact dumps). When in between obsessions, I can get depressed, unhappy with my surroundings, and feel lost.

13.

I feel affection regularly and strongly, but struggle to communicate it out loud or obviously. The ways I show affection often seem small, subtle, quiet, and different than neurotypical ways which can often make people in my life feel unloved. For example, I may want to give a compliment but struggle to communicate it out loud, so I give up. And in that long time I’m struggling, I won’t be able to manage facial expressions or responses so I can seem distant or completely detached. In reality, I’m just trying to figure out how to say “I love you” out loud.

14.

Direct eye contact can make me physically uncomfortable and requires more mental energy and concentration than it does for neurotypical people. I can look people in the eye when I’m comfortable with them and/or have high energy levels. However, I listen and speak best when not making direct eye contact. I often find myself looking people in the mouth when I need to mimic eye contact.

15.

I stim. This is a phrase adopted by the autistic community and it stands for self-stimulatory behavior. When I need to comfort myself in a high-sensory environment, when communicating verbally, when feeling overwhelmed, or when nearing a meltdown or shutdown, I may rock back and forth on my feet or in a chair, rub my fingers together or put my hands together, fidget with my clothes or water bottle, pick at my lips, pull my eyelashes out. As you can see, some of these are harmless and some are not. With extensive time and effort, however, harmful stims can be replaced by harmless stims.

Stims can also happen simply as a means of expressing extreme positive emotion. For me, these are most often verbal stims which means I repeatedly whisper, shout, or sing words or phrases that sound pleasing to me. Often, they’re even completely made up words, like when I tell my rabbit I’m getting his greens and sing “Toastie needs his greebs” on repeat.

16.

Bright lights make me physically uncomfortable to the point of physical pain and drain me of energy. If I’m already low on energy, I may not be able to stand them at all: this means I may get completely distracted by them, unable to see anything else, and/or have to close my eyes. This includes bright sun, sun against snow, fluorescent lights, and car headlights which makes driving at night when I have low energy very dangerous.

17.

Certain sounds or complexity of sounds make me physically uncomfortable to the point of physical pain and drain me of energy. One specific sound that always hurts is silverware scraping against a plate or bowl. Complexity of sounds relates to high-sensory environments; even in quiet places, if there are a lot of different small sounds, it completely throws off my brain. For example, I may not be able to stand being in a library if there are pages rustling, printers printing, doors opening and closing, air conditioning blaring, and people whispering all at once. Crowded movie theaters before the movie starts are particularly hated places.

18.

I need direct over-communication or I will not understand what is being said to me or asked of me. I can’t accurately read between lines or pick up hints; even the most harshly blunt comment or criticism is better than an indirect or passive one. This means, when something is asked of me, I will follow up with a lot of questions. If my follow-up questions are rebuffed or misunderstood, I may react instinctively with anger or defensiveness because I’m uncomfortable when I don’t understand something.

Similarly, I need detailed step-by-step instructions which I can sometimes compile myself, but often need help with and will ask questions about. For example, this includes things like getting driving directions from someone, being told how to drop something off at a new post office, or starting a new project at work. Because I struggle with verbal communication, these are best understood when written down; if communicated verbally, I will need to hear them multiple times before I understand and remember.

19.

I often say things I don’t realize are hurtful. This can be either because I understand it as factual, I don’t understand it as hurtful, or it’s funny to me in the moment. As a characteristic of my autism, these things often come out of my mouth before I’ve thought them through. If immediately shut down without sufficient, direct communication, I may not understand what I’ve done wrong.

20.

I have significant executive function impairments. Executive function refers to advanced cognitive skills, like attention, working memory, planning, reasoning, sequencing, and flexible thinking. This means doing a simple task like picking up a prescription or making a doctor’s appointment is, in my brain, broken up into too many incomprehensible or unmanageable tasks. As a result, I often put these off far too long. If someone offers to do them for me, I feel the most love and appreciation. Seriously, the most.

Executive function can also negatively affect personal care, like showering, remembering to change a tampon, cleaning my house or leaving the house, getting off the couch, going grocery shopping, and other tasks that may seem extremely simple to others.

 

To Summarize 

Autism is a developmental disorder made up of human characteristics. No, not everyone is a little bit autistic, and that’s a hurtful phrase to hear. However, everyone can experience a few autistic characteristics. If you do, that doesn’t mean you’re autistic; it might, sure, but you don’t need to dive into that unless you’re ready.

All I ask, as an autistic person, is for a little more time, a little more space, and a little more patience. I may not act like the other people you know, but I’m pretty damn cool. And please don’t touch my face or scrape your silverware.

An Essay | Autism Isn’t All Bad, but Sometimes It’s Bad

I wrote this essay on April 18, 2019 just a few days after a breakup. It does not represent how I feel every day but I do feel this way sometimes: that the day-to-day struggles I go through as a result of my autism are too much. Sometimes I wish I didn’t have to deal with them, or explain myself, or experience shutdowns and anxiety. Sometimes I wish I was normal. Other times I’m very glad to be different.

 

Autism Isn’t All Bad, but Sometimes It’s Bad
April 18, 2019

I think the thing that hurts the most about breaking up with someone—besides the period of actual mourning—is the ache of genuinely trying yet still failing. And it’s not like I failed at just anything, I failed at something I cared about, and I haven’t been able to get comfortable since.

Hi, my name is Sabrina and I’m autistic. That’s how I prefer to say it; I don’t need any of that person first bullshit because my autism is part of my personhood; it is my personhood and there’s nothing wrong with it. But it still fucking sucks.

There’s a line in one of my favorite songs—The Gold by Manchester Orchestra—that reads “I don’t wanna be me anymore.” The full verse is:

Couldn’t really love you anymore;
You’ve become my ceiling.
I don’t think I love you anymore;
That gold mine changed you.
You don’t have to hold me anymore;
Our cave’s collapsing.
I don’t wanna be me anymore.

And right now, here, after having ended something and hurt someone, but also regularly, often, and painfully, I don’t want to be me anymore. Those are the moments this hurts: the moments I realize my actions—the things that feel unchangeable and sometimes unmanageable—have hurt or are hurting someone else. Because they do; they hurt people whether those people understand why I am this way or not. I can be unresponsive, I can be unemotional, I can be restrained and uncommunicative, and when I’m feeling overwhelmed emotionally or sensorily I will get robotic. My tone of voice will be flat, it will probably seem like I don’t care, I won’t respond to every sentence or phrase or word and I’ll reject touch. And these are reactions I can’t always control, because I am autistic, because these are reactions that come from having autism, because I experience the world differently than normal people, than the majority of people, than you.

I heard that line just a few minutes ago, “I don’t want to be me anymore,” and tears came to my eyes. It hurt to hear so plainly and succinctly, because right now, I don’t want to be autistic anymore.

Please know, I don’t want to die; this isn’t a suicide note. I just wish so strongly and so randomly that I didn’t have to feel and react to the world this way. It’s hard. And because I’ve never felt the ways in which everyone else feels and reacts to the world, yours seems easier: because I am struggling. I am trying, but it often feels like I am failing to make this work: to be both autistic and sociable, both overwhelmed and confident, both logical and emotional, both independent and affectionate, both scared and agreeable. I want to be normal because it seems like there is a normal out there somewhere. But maybe there isn’t.

And that’s why this hurts right now. I didn’t just fail someone I cared about, I didn’t just give up on something I’d been trying so hard to do, and I didn’t just quit trying. I failed to be normal, I gave up on overcoming my obstacles, and I quit trying to be someone I’m not. There are good things and bad things in that list, but right now, it just feels bad. It feels bad because I failed to be normal, and now, I have to keep failing. Now, I have to be me: Sabrina, autistic, sarcastic, boring, strong, unresponsive, weird, funny, unemotional and hyper-emotional, standoffish, tired, anxious, unapologetic, nauseated, uncompromising, smart, stubborn, scared. Is this normal?

Whatever it is, I’m not sure I want to be normal, but so often it feels like the only option we have.

 

Stay gold,
Sabrina

This is Not Anxiety; This is an Anxiety Disorder

I have an anxiety disorder. In diagnostic terms, I have agoraphobia, panic disorder, and social anxiety disorder. These are caused by a chemical imbalance in my brain; that means they are physical, they are real, and they are every single day. On a good day, I am functional. But on any day, the slightest incident—standing in line in a crowded grocery store or having a conversation with a stranger—can cause my brain to pump adrenaline into my body and trigger a series of symptoms that turn a good day into a bad one.

Those physical symptoms are the easiest to talk about. The ones I now consider common include shaking hands, nausea, exhaustion, having to go to the bathroom more often. On an anxious day or during an anxious episode, I experience dizziness, numbness in my hands and feet, shortness of breath, choking on nothing, chest pain, random pains in my arm, shoulder or leg, headaches. Every single day, I struggle to control my body temperature; I get so cold in room temperature surroundings that I shiver and I get so hot that I’ll sweat through my clothes. It takes one thought to pop into my brain or one comment from someone else for my appetite to disappear; suddenly the food I’m chewing will be so hard to swallow I have to fight not to throw it up. Sometimes I’ll force that bite of food down; sometimes I’ll take another one just to look normal; meanwhile, I’m mapping the quickest route to the bathroom in case I do puke.

My mental symptoms are harder to talk about because I am not comfortable admitting to them. Blaming actions and thoughts on an invisible illness can feel meaningless and cowardly. Some days, it takes hours for me to leave my apartment because I am scared to do so; that’s the agoraphobia. I need to plan social outings in advance so I can mentally prepare for them; that’s the social anxiety disorder. I retreat from friends, family, public spaces, and strangers because I can’t speak, communicate, react like I normally do, and I’m afraid I might have a panic attack or show physical symptoms in front of them; that’s the panic disorder. I’m scared of being looked at without knowing it. I’m always aware of the people near me and am constantly looking at them to check whether or not they’re looking at me. I love public speaking because, when I’m on stage, I know exactly where you’re looking; if I’m in the crowd, I don’t know who might be. I’ve noticed recently that my everyday symptoms are typically less severe when I’m alone. When I’m with anyone else—my best friend, my mom, my brother, or my boyfriend—I feel the need to protect them; my brain and my body are on alert, taking in every sight, sound, person, and shadow. This, alone, doesn’t make my symptoms worse, but it can be exhausting. When my symptoms are bad, I distance myself from all of those people to give my brain and my body a break. Then, I feel worse for distancing myself.

Anxiety disorders are every day; this is me every single day. There are good days and there are bad days, but there is not a single one where I feel normal, unafraid of my own symptoms, or unburdened by own brain. On days that are worse than others, I will struggle to be affectionate, to leave my home, to do new things or go to new places. I will struggle to speak, to emote, to respond to messages, to make decisions. That doesn’t mean I don’t want to speak, don’t want to leave my home, don’t want to make a decision. That means that being forced to make a decision might make me more anxious; it might trigger more symptoms; it might cause a panic attack.

But I don’t want to sound like I’m resigned to this. One of my worst fears is finding that I have shamelessly or inaccurately used my anxiety disorder as an excuse. Because of that, I often don’t mention it at all and, therefore, let my seemingly apathetic, unfriendly, and inconsiderate actions go unexplained. I won’t respond to something you’ve said because I am struggling to speak; that doesn’t mean I’m mad; it doesn’t mean I’m not listening. I would rather you think I’m apathetic, unfriendly, or inconsiderate than explain exactly how I’m feeling. I would rather go home and have a panic attack alone than ask for help, or forgiveness.

I don’t want to sound like I’m resigned to this: like I am lying down and letting anxiety have its way with me. An anxiety disorder is caused by a real chemical imbalance. It is physical, it is real, it is every single day. It is not something I can fight and destroy and beat just by wanting to or by telling myself there’s nothing to worry about. After therapy, treatment, hours of discussion and introspection, I know there’s nothing to worry about, but there’s still something telling me I don’t. There’s still something pumping my body with adrenaline, worry, and fear. This is not my choice. This is not laziness. This is something I can only manage: I can do small things every day to maybe, eventually, one day, reroute my brain circuitry so that maybe, eventually, one day, my brain balances, understands, and calms down.

But that is not my goal today. My goal today and everyday is to just get through it, and to, hopefully, not have a panic attack. My goal today is to get off my couch before noon, to put my phone down, to leave my apartment and do at least one of the things I need to do, to walk my dog without fear of running into someone who wants to have a conversation, to drink at least 75 ounces of water, to eat, to take deep breaths.

Answering your messages, hanging out with you, making plans—these things are not my goals. My goals are much smaller: because the things that may be normal, that may be easy, for you are not so easy for me.

Stay gold,
Sabrina

I Have an Anxiety Disorder

Today, I’m going to share an anecdote about my anxiety disorder and I hope you’ll stick with me through the end. I promise to be brief.

For those who don’t know, I’ve recently been getting back into the fitness lifestyle I love and that I let go for about a year. As a result of getting back to lifting, I’ve been gaining weight pretty rapidly. Currently, I weigh more than I ever have in my life: and I look pretty damn good.

But I have an anxiety disorder. And, sometimes, it occurs to me that maybe I don’t look pretty damn good.

My anxiety is so severe that I even have an issue calling it severe — because maybe it’s not really.

I don’t trust my brain so completely that I sometimes convince myself that what I see when I look in the mirror isn’t true to life: that there’s some disconnect between my eyeballs and my brain and nobody has the heart to tell me. I’m not kidding nor am I exaggerating. And I’m not asking for reassurance because I probably won’t believe you. Please refrain.

At this point I have enough awareness of my own anxiety disorder that I can tell myself these anxious thoughts aren’t true, or at least that I should not act on them. I may never completely convince myself that’s correct, but I can say it plenty of times and I can hold back for the most part. After treatment, counseling, and a few years of experience, I know not to act on every thought that shows up in my brain.

But some people don’t. Some people are living their lives undiagnosed and unsure. They don’t realize their disordered thoughts come from a disorder so they listen to them and act on them as though they’re right. They develop anorexia, bulimia, they over exercise, they believe that they don’t work hard enough, that they don’t fit in, that they don’t deserve what they have, they kill themselves.

To these people and to every single human reading this, I ask that you stop here and take a breath.

Then, I ask that you celebrate just one thing about yourself that is good, one thing that you like. I don’t care if it’s as big and vague as your sense of humor or as small and specific as your eyelashes. Celebrate it today, right now, however you can; then celebrate it again tomorrow and once more the next day.

Do it when you wake up or when you go to bed, everytime you take a drink of water or just once as you randomly remember.

That’s all I ask. Three days, and then read this again.

Stay gold,
Sabrina

Maybe it’s not Hurricane Season

Have you listened to Lukr yet?

I recently listened to his debut single Fucked Up Summer. I’m definitely interested to see where he goes, but it’s nothing special — his second single, Scarecrow, is much better. BUT. Credit must be given where credit is due. This song that I wasn’t even enjoying that much got me thinking about myself and my own fucked up summer. I suppose I wouldn’t go that far — but this summer has at the least been a whirlwind.

Here’s a video to watch if you’re already bored:

Let’s have a metaphor to describe the feeling right now:

I’m in the eye of a storm I knew was coming but, as is typical, I did nothing to prepare. I stood in one place and watched it approach and then it was on top of me. So I’ve just been flown and somersaulted through, give or take, 700 miles — about the distance from Montana to Denver. And now I’ve been placed, ever so gently, at the very edge of this eye. Everything is quiet; everything is still; and I’m looking forward but I can feel everything in a whirlwind just behind me. And I can see everything in a whirlwind ahead of me and to every side. But right now. 

Right now.

I’m just trying to stop my head spinning and figure out exactly where I am.

I suppose, if we’re to keep this metaphor going, it doesn’t matter where I am: because in a short time — maybe tomorrow morning, maybe in a week — I’m going to be picked up again and thrown around over approximately 700 more miles until I get through this. And if it’s hurricane season, I’m going to be picked up again in a few more weeks. Maybe it’s not hurricane season.

But what I’m feeling today is rage — focused rage, determination, fight. Right now I’m looking across this abstract valley and wanting to sprint through it, to get to the other 700 miles as fast as I can, to keep running through them, screaming.

But I won’t do that. Because rage is not productive. For me, for my brain, rage is destructive. So for now I’ll stand at the edge of this eye as the past 700 miles rotate away from me and the 700 miles ahead move closer. And I’ll stand here and I’ll wait; maybe I’ll sit; maybe I’ll pick daisies or count the clouds in the sky. And when the other edge finally reaches me, I’ll put my head down and step inside.

And from here, I can’t see what happens next. The figure pushes its shoulder into the wind and the screen fades to black.

Stick around for the credits, though. 

I feel strange when I think about Montana. I miss my condo. I miss the way the sun came in my bedroom window in the evening and made everything the perfect shade of yellow. I miss that sun. I miss having my own space. I miss the quiet. I miss being in my room and hearing my roommates get home. I miss when Kat would yell, “Hello?” down the hall — kind of quietly because there was a good chance I would be asleep. And Copper would look at me, asking if he could go say hi. I miss lounging in the living room. I miss Ink Master marathons and catching up on The Path and binge watching HGTV on days off. I miss getting home from work and cooking tacos — and suffocating everyone because I used way too much habañero. I miss going to the grocery store late at night because we had put it off all day and we finally felt productive at 10 p.m. I miss hanging out together and not feeling pressured to talk. I miss the days we talked for hours. I miss Starbucks runs. I miss the days I could send a warning text and know you’d be there when I got home, ready to make an angry trip to Barnes and Noble. I miss Emily’s cooking. I miss thinking ten minutes was a long drive. I miss all Emily’s plants, and Kat’s dying ones. I miss rearranging our living room whenever I got bored. I miss the toaster oven. God, do I miss the toaster oven. I miss lugging dog food around at Dee-O-Gee. I picked up a bag the other day and thought it was heavy. I miss talking about life with Laura when the store was empty. I miss hanging out at Alyssa’s house. I miss playing Pandemic and eating peanut butter Ramen and watching Studio Ghibli movies. I miss Moppe trying to drink our wine, crazy bun. I miss our roommate walk and blade time. I miss our neighborhood. I miss Lockhorn Cider House and all day happy hour at Seven Sushi on Mondays.

I can feel it all in a whirlwind behind me. And I can see there’s something else coming.

And I’ll stand here and I’ll wait.

It feels like my brain and my heart haven’t stopped racing since I closed the driver’s door of that Uhaul in Bozeman.

But I’ll stand here and I’ll wait. And I’ll be okay.

Stay gold,
Sabrina

Living with Depression

There is one thing that I like about my depression and I am going to try my best to explain it here.

I’m going through an easy phase right now, as far as depression goes. It’s the same every time: the busier I am, the brighter my cloud. And a regular nine to five job is good for that, especially one that I still want to work on when I get home.
I was sitting on my back porch in the evening. I had gotten home from work after getting through a reasonable amount of rush hour traffic; I hadn’t been delighted to be in traffic – I am a human being. But when my cloud is brighter than usual it’s as though every moment is happy, happy compared to the dark times. So as I sat on the porch and I thought for two seconds about the traffic that day, it automatically registered as a happy memory.

If there’s one thing I like about my depression: when times are good, every little memory is happy, even when they’re mundane, even when they seem angry or sad. Because compared to the darker times they are happy.

It’s easy for me to feel hopeless when I’m depressed, that’s essentially what it is, I suppose: hopelessness. When I’m pushing through a hard time, I’ll look forward for a second and realize that there are people who never get through this, who never stop being depressed and I realize that I could be one of those people. I could be battling this for the rest of my life.
Then, when I have a moment like this, when I stop and realize I’m happy today, I’m lighter today, I think about what it would be like to feel this way forever.

I was sitting on the porch the other day and I was thinking about traffic and I was glad. Glad to be exactly where I was and where I had been.

Stay gold,
Sabrina