This Is My Autism

Lots of people don't understand what autism IS. 

That's okay, I didn't either.

I just thought everything I went through was normal. I thought everybody was like this, that everybody experienced things the same way I did. Because when you hear "you're fine, don't be so dramatic" enough times, eventually you just figure those people are right, and you stop trusting your own perceptions of reality.

It's only been in the last year that I've started to discover that many of the ways in which I process the world are very different from the norm. 

As far as touch is concerned, I've always known that I'm very sensitive to textures and to irritation of the skin. I sunburn even with high SPF sunblock on. As I mentioned in my previous post, tags on clothing drive me bonkers, and autumn is my favorite time of year for clothing because everything is soft and I can snuggle into scarves and sweaters and soft, heavy socks. My first requirement for new clothes is texture; if they don't immediately feel soothing to the touch, I move on. I am soothed by touching soft fabrics or my cats' fur, and I often carry a worry stone in my pocket because it calms me. But bad textures or touches can set my teeth on edge; if I get the edges of my long sleeves wet when I wash my hands, those little damp spots on my wrists will drive me up a wall and distract me from whatever it is I'm supposed to be doing.

I don't have a ton of issues with smell or taste, though I do tend to prefer my food a bit blander than the average person, and if a food's texture is "off," I can't eat it. I actually like the taste of mushrooms, but can only eat them fried or this one way my mom stuffed them, because otherwise they feel slimy in my mouth and I gag. I do have a visceral reaction to that "fishy" flavor that anything but super-fresh fish tastes and smells like, though I like shrimp and scallops and stuff that comes in shells, because it doesn't get that flavor as much. But I can't typically make myself swallow food that once had fins. Sushi is right out, and the texture of eel nearly made me cough my brains out once upon a time, because I couldn't get the image and feel out of my head that I had chewed on a severed human tongue. 

I DO have major issues with sound and sight. ADHD and autism share similarities in sound processing, so some of you might recognize some of yourself in this, but with sound, everything around me just blends together in terms of importance and priority. You know how, when you're driving and trying to find a new place, or listening to directions, or looking for a parking spot, and you turn your radio down? Why do you do that? Theoretically you shouldn't need your ears to look for your destination, but the sound pulls at your attention and requires processing power in your brain. For me, it's like that all the time, except I can

never turn the world's noise down. The air conditioning kicking on is just as loud and important to my brain in terms of input as the important message you've just imparted to me; I don't WANT that to be the case, and I'm TRYING to mute everything else, but my brain doesn't have as much capability in that area as most people's.

This is why my phone is on silent all the time.  

I started a new job this week, and I wear a headset, and when I'm talking to a customer at the same time that someone requests something on the headset, they cancel each other out and I have no idea what either one said. It's like someone does a hard reset on my brain and I forget the last 10 seconds or so of what I was just doing. It's very distressing. A year ago I would have gotten cranky and upset without knowing why. Now I know why and am trying to be gentle with myself and figure out ways to accommodate this (Can I turn the volume way down and hope that others at the counter will catch a request, or that I'll hear if they ask for me by name? Are there positions in the store that allow me to work without the headset?) 

I bought my first set of noise-cancelling headphones this week, and it was an experience. Wearing them, suddenly I'm no longer aware of the dog barking three doors down, or the weed eater next door, or my next-door neighbor's A/C kicking on, or the bird chirping right near the window. I felt tension in my body ease. My shoulders came down. My breath slowed noticeably. My brow unfurrowed a little; I genuinely felt that happen. I wondered how much of the body tension I've spent so much money to tackle is due to my mechanisms for defending against all the input around me.

Sight is also weird for me. When I was young, up through my teenage years, I can remember that when I was tired, my eyes would "lock" onto something unmoving in the distance, and I really couldn't look away. When this happened, I couldn't hear anything, either. It was a weird sensation that was mildly distressing because I knew I needed to look somewhere else, do something else, but it was also relaxing, because I couldn't, and so I didn't have to process as much. Other times, especially when I was little and living at the farm, I would stare off into the distance, and when my eyes relaxed, whatever I was looking at would seem to "zoom" in close to me, like a close-in movie shot. I've since learned that this is a trait of something called "Alice in Wonderland Syndrome," which is a real thing and linked to autism and migraines, which I've suffered from my whole life! 

Besides the visual distortions, Alice in Wonderland Syndrome and autism can also manifest in terms of your body feeling or looking larger or smaller or yourself or objects being in strange spaces in space. I bump into things. A lot. When I was younger I was told that I just needed to slow down and pay more attention to where I was going, but that doesn't work when your brain tells you the chair is THERE, when it's actually two inches to the right. That's something that neurotypical people really don't understand. "Just look and see where the chair is!" Well, theoretically, yeah. But the chair is in a different spot in my brain than in real life, and now I'm bruised.

Speaking of seeing things differently, things move in my vision, particularly if I'm relaxed. Spots on a wall will shift slowly or double. Stripes wiggle. Ceiling fan blades move, even though they are still. Lights stick around after their source moves, like when you're in a dark room and someone suddenly turns on a light and then turns it off again, and the image of the room is imprinted on your eyes for a minute, except very faintly and all the time unless I work hard at ignoring it. Still light also moves even when it shouldn't, crawling towards and away from its source like a slow candle flame. Colors jump out at me, so it's important that things "go together." I can make it go away, make everything be still and quiet. But it takes effort and attention that I never knew I was using until a pandemic made it so I didn't have to.

This video is a pretty good metaphor. If you find it intense, well, 98.3% of you are neurotypical. The only thing about this video that feels abnormal or bothersome to me is the breathing, because my empathy for someone in that much distress goes haywire. And I don't meltdown or shutdown to the extent that my vision goes dark around the edges very often at all, because I remove myself from situations before it gets to that point. But otherwise, yeah, that's pretty close to what living is like for me, especially sound-wise, unless I work really, REALLY hard ALL the time to tune it all out. And that takes energy, lots and lots of energy, energy that I have burned and burned and burned until my reserves are completely gone. 

And like I said, I had no idea this wasn't normal. No idea at all. Because I was told so many times to stop making a big deal about things that wouldn't bother a neurotypical person. 

Happy Autistic Pride Day!

So, uh…Happy Autistic Pride Day, y’all.

I’ve been holding on to this one for a while, because it just wasn’t the right time to share it, what with the spotlight needing to be on some other folks for a while. 

I’ve shared this with a small group of people, but it’s time for the larger world to know.

I am autistic. 

I had suspected it for a couple of years, and then this spring I finally found the wherewithal to start searching for answers, and my 39th birthday present was indeed a diagnosis of autism by my therapist. 

I get that I probably don’t look or seem like your impression of autism, especially if you don’t know any other autistic folks. So I’m going to try to tackle just the top FAQ’s or misconceptions/questions/protestations I can here:

1. “But you don’t seem autistic! Autistic people are (insert stereotype here)!”

Actually, autism is a spectrum condition, which means that it presents in a variety of methods which affect each autistic person in a different way. For decades, it was thought that autistic people also always had intellectual disabilities or problems with communication, but we have known for a couple of decades now that that is simply false - in fact, the majority of autistic folks have average or above-average intelligence, though communication styles may differ, as autism does affect some folks’ ability to speak, particularly in times of stress. That doesn’t mean they are not intelligent or capable of understanding, though. For more on what the autism diagnosis covers, check out this video. 

In fact, autistic people are all around you - current estimates are that 1 in every 59 people is autistic, or 1.6% of the population, and that number is probably low due to the difficult in women and girls securing a diagnosis. 

2. “But you just seem normal!”

This one has a two-part answer. 

First of all, you need to understand something called “masking.” This is when autistic folks, more often women and girls than those who are male, cover up and hide their autistic traits in order to fit in with society’s expectations. This is often subconscious, but can also be semi-conscious when an autistic person knows that they feel “different” and struggle to fit in, but don’t understand why. Often autistic people who mask hide or change their stimming, natural facial expressions, body language, and conversational tactics to appear socially acceptable. Some autistic people struggle more with this than others; I learned socialization very well because I was hyperlexic as a child and constantly read fiction, which is proven to improve empathy and recognition of others’ emotional states as well as reading facial expressions and body language. In short, I am very good at appearing “normal,” but I didn’t learn this the way neurotypical people do - I had to actively study it, though I didn’t understand I was doing it until much later in life.

Second, LOLOLOLOL, I am NOT normal. (I mean, if you’re here, you know that already, but still.) I absolutely have challenges that you can’t see, and that greatly affect my life. More on this under the section about functioning labels (next section, #3). 

3. “So are you Asperger’s or high functioning or something?”

Nope. Because there is no such thing.

Asperger’s Syndrome is an old diagnosis that was thrown out in 2013 and replaced with the generalized “autism spectrum disorder” in the DSM-V. Partly this is because Asperger was a Nazi, but this is largely because functioning labels are not only harmful, but false.

The idea of functioning labels is primarily based on how my autism affects those around me. Someone who is considered “low functioning” is considered someone who needs tangible help and support from those around them, while those who are considered “high functioning” are those who seem independent of those supports. But the problem is that I don’t LOOK like I need support, but I absolutely do. I’ll get to this in a minute (#6, Burnout.)  Just because someone’s condition isn’t affecting YOU doesn’t mean it’s not affecting THEM. And just because someone’s condition means they need visible support does not mean that they aren’t an intelligent adult who is capable of advocating for themselves. Many people infantilize those who are considered “low functioning,” assuming that they are child-like, which denies them agency and opportunity.

4. “So what makes you autistic, then? Aren’t we all just a little bit autistic?”

This misconception often comes from the concept of autism as a spectrum, where people think of it like a color spectrum that travels from pale to dark, less to more. But that’s not it at all. It’s more like a color wheel, or like the image below. In it, you can see a variety of traits that an autistic person might struggle with (though this illustration definitely does not cover them all.) Being autistic means that you have several of these traits, to an extent that it affects your life in some large way. 

For me, I struggle with sensory issues. I am extremely sound sensitive and bothered by noise. I nearly went mad for the first month of quarantine, when every neighbor I had was outside every day, mowing and weed eating and leaf blowing and chainsawing. I actually wore earplugs around my own house, inside, for several hours a day sometimes. I wear earplugs every night when I sleep. I cannot sleep unless it is pitch black, semi-cold, with super heavy blankets (god bless the weighted blanket trend,) and there is no air blowing on my face. I can wake myself up just by breathing on my own arm. 

I have sensory processing issues as well. I can’t understand what someone is saying when there is background noise at all (yes, this is an ADHD thing as well.) Many of you have told me things in crowded spaces, and I have asked “what?” three times, until I am embarrassed and just nod along to make it seem like I wasn’t completely lost, and most of you probably never noticed. 

I can’t stand tags in my clothes and immediately cut them out, and when I was a little girl, I cried when my mother brushed my hair. 

I also have terrible proprioception, which is basically knowing where your body is located in the world. I can dance, because I practice those movements ahead of time. But I bump into walls and doorways and furniture every single day and am hopeless at sports. I can’t ride a bicycle. I have no idea at all what the appropriate amount of distance is supposed to be between me and another person when we are socializing.

I struggle with interoception - I never know when my body is hungry or thirsty or if I need to use the bathroom or if I’m tired until it’s so bad that it overwhelms me. I have to set reminders in my phone to do many of these things. 

The grocery store is a nightmare for me with all its fluorescent lights and noise and visual clutter and things that have to be remembered. I’m grateful every day for Kroger ClickList. 

I can’t lie. Can’t. I also can’t tell when someone else is lying unless it follows a pattern.

Oh, yeah - I’m a MASTER at pattern recognition. That’s the trait that’s gotten me as far as I have gotten. If it repeats, I’ll learn it. Especially history or human behavior. 

I don’t make eye contact nearly as often as you think I do - I look at the spot between your brows. And if you MAKE me make eye contact while we talk, I’ll be so focused on that intensity and making sure I’m appropriately responding that I will have no real idea what it is you are saying. I’m a great listener if you let me look at the floor or a wall and especially if you let me stim by picking at something.

I lined up my toys as a child and now I compulsively line up my books on their shelves, which soothes me. 

My executive function is crap, but I’m hopefully getting a handle on that thanks to some ADHD meds. It’s early yet, but cross your fingers. But for most tasks, the time I spend on transitioning between things takes more time than the task itself.

Oh, yeah - if you interrupt me in a task, or request that I switch gears before I’m finished with something, even though you’ll probably never know, I’ll be incredibly distressed and most likely rage-filled. But I’ll never show how close I am to bursting into tears, because that’s not “normal.”

5. “Don’t autistic people lack empathy?”

Last one for now - this is a hard NO. This is absolutely a myth, and probably somewhat created by the whole “lack of eye contact” thing combined with how autistic folks show compassion in different ways than neurotypical folks. But in truth, autistic folks are often shown to have much, much greater empathy than the average population - in fact, we can be so empathetic that it can be debilitating.

This is the case for me - I’ve never been able to let go of a stuffed animal because I knew that no other person would ever understand the life and personality that exists inside that cotton batting. I anthropomorphize inanimate objects and feel so hurt when anyone calls an object “stupid” - it’s not the object’s fault, it’s trying.

It’s also why so many autistic folks, myself included, have such a strong and unyielding sense of justice. We relate to and understand marginalized and oppressed folks, and our analytical powers allow us to penetrate to how injustice makes those people feel, and we fight with everything in us to end that injustice. We also hyperfocus on things, and for many of us, social justice becomes a special interest in which we devote much of our time and attention as we try to create a world that is better for all of us.

6. Autistic Burnout - “But you did X for so long - how were you able to do it if all these things bothered you so much?”

Well, I didn’t KNOW I was autistic, and the world kind of demanded it of me, so I just did it, anyway. And I thought it was this hard for everybody, because I heard a lot of people telling me I just needed “grit” or some other synonym for “just do the thing and stop asking questions.” And I actually chose an occupation for a long time that in many ways fit with my autism. In education, there is a strict daily routine, and I didn’t have to adjust to change very much, which is incredibly difficult for me. School and academia is where I had always thrived, so I stuck with it. And there is some benefit in being able to notice every conversation in a room with teenagers; I could hone in on the “hot spots” in a room pretty quickly. Unfortunately, it also completely drained me over time, and created something that is gaining increasing attention in psychology circles: autistic burnout.

Autistic burnout is when an autistic person has masked their autism or sought to function so long in an environment unsuitable for them that their brain just gets overloaded and kind of…fries. It’s often initiated by some sort of trauma, but not always (hey, 2018.) This is where I am now. I’m struggling to complete tasks that a year ago I tackled with…not ease, it was never easy, but at least without much delay. I nap a lot. I’m exhausted to the bone, and everything makes me cry. (Seriously, even TV commercials, it’s ridiculous.) There’s no known cure for burnout, but rest is supposed to help. Except we live in a society where I can only survive and pay my mortgage if I am productive, so there is no rest, only pivoting to something different. I am currently trying to build a life that will allow me to work from home next year. We’ll see.

So there it is. If you’re still here and still reading, thanks. It means more than you know. If you have questions, ask’em. I plan on writing a lot about this, and lots of stuff is in the works, so if you’re interested, keep an eye out.

Happy Autistic Pride Day!