Saturday, July 23, 2022

#AspieGirl (?)

Here’s what happened. 

Multiple people around me got diagnosed with ADHD, including one of my roommates. Watching their journeys, I saw a few things that I recognized. 

Object permanence problems. (If I can’t see a food item in the fridge, it does not exist. I have thrown away so many packages of cheese. And if I need to remember to bring something with me somewhere, I have to either leave myself a note or leave the item right by the door.) 

Bumping into things. All the time. My spatial awareness of my own body is shite. 

Hyperfixations. Having projects or TV shows or movies or hobbies that take up all of my mental time and energy for a significant period of time. Some could be considered specialized interests, since I’ve been obsessed with them for most of my life and have a considerable amount of knowledge about them. (Hey, ancient Egypt.) 

But as I learned more about ADHD, I kept bumping up against one particular idea: that people with ADHD often struggle with executive function. 
And I generally…don’t? When I’m in a bad depression dip, I struggle to function, but it’s not quite an executive function issue. It’s not that I have some block surrounding organization or task completion or even being overwhelmed. My block is surrounding energy. In fact, when people talk about how difficult it is to complete a task, I have a hard time understanding what they mean. You just…do it? 

So I was like, “Hey, internet, what has some of the symptoms of ADHD but you’re hella good at organizing things, breaking down a large task into smaller parts, and completing to do list items, and also were a weird kid who struggled with social cues?” 
Autism. The answer is autism, kids. 

So I had a crisis, because I couldn’t have autism. I hated math growing up, and I’m a deeply empathetic person who’s sensitive to the feelings of those around me, and I actually have lots of friends now, and I understand humor and metaphors. So there’s no way I could be autistic. 

And then I took the RAADS-r test and scored an 83. The minimum score for autism is 65. So I took another test from The Autism Research Centre in Canada, and scored a 30, which is at the low end of high risk. 

And then, based on the RAADS-r questions, I started really looking at myself, and who I was as a kid, and who I am now. A fearless moral inventory, if you will. 

And the truth is that I really was a pretty weird kid. I never quite fit in…I always felt different from other people, and most of the time, that was fine with me. But here is a short list of the ways I was weird, which are all also autistic traits: 
  • I was very very anxious about food. I was a very picky eater, refused to try new foods, and had an enormous irrational meltdown if someone tried to get me to eat something I didn’t like or hadn’t tried before. 
  • I often wore the exact same thing every day for days and days (and weeks?) on end. For like, a long time. For at least the first half of my freshman year of high school, I wore the same jeans, off-white textured top, and blue cardigan. Every day. 
  • I played imagination games (dress up, Barbies, dolls/stuffed animals, etc) for longer than average. (I think.) Until I was 14 or so. 
  • I refused to put my head underwater at the pool. I remember a swim teacher specifically giving me this note at the end of several weeks. She might have even bribed me with candy? I also remember having similar anxieties about having my hair washed. 
  • Hygiene in general was difficult, because of what I now understand to be sensory issues. I often refused to brush my hair, and would get these awful, matted rat’s nests in my hair as a result. I struggled with brushing my teeth, especially spitting the toothpaste out. 
  • In general, I struggled a lot socially. Some of that also probably had to do with the hygiene and outfit things I just listed, but even aside from that, I often just couldn’t connect to my peers. I had a hard time accessing what was “cool” or “popular.” It all seemed so arbitrary to me, and I couldn’t keep track of it, and couldn’t figure out what was important or why. I was teased and picked on, sometimes by people whom I had thought were my friends. I often had a sense of having missed something in social interactions…I could feel the temperature change in a conversation, but I wouldn’t know why or what had happened. I disappeared into books for much of my childhood, and preferred to spend recess in elementary school making daisy chains by myself to playing with my peers. Freshman year of high school, I often sat in the hallway above the auditorium and read books during lunch. Granted, I wasn’t a complete loner. I did have friends and meaningful connections, but for a long time, they were all just as weird (and probably as neurodivergent) as I was. 
And you guys. Most of these things were going on well into my teenage years. It took me finally getting into theatre my SOPHOMORE YEAR IN HIGH SCHOOL to feel like I could finally start to fit in with my fellow humans. 
(I have a theory about why—I think it’s because theatre kids are VERY EXPRESSIVE and direct, and I could easily navigate conversations that were with people who were weirdos but also clearly expressing emotions in very dramatic ways. Like, weirdness was embraced among theatre kids. And everyone was so dramatic, which meant social interactions were less subtle. And scripts gave me parameters to interact within. I could make strong individual choices, but there was always a “right thing” I could say when following a script onstage. It was enough to give me confidence to develop those skills more as a person offstage.) 
But you grew out of all of it, right, Liz? 
Here is a short list of the ways I continue to be weird, most of them starting in childhood but continuing on today, all of which are really common traits among those with autism: 
  • I’m still a picky eater, tbh. Spicy foods make me feel like I’m dying, and new foods give me anxiety, and if a food has a texture I dislike, it makes me gag. 
  • My most prevalent stim is twirling my hair, followed closely by picking at my nails and swaying while standing. I often use fidget toys during movies or plays to keep myself from stimming hard in other ways that are more damaging (like making my cuticles bloody with picking at them). 
  • Little spoons only. I am picky about silverware and dishes in general. They must be the right shape, weight, material, etc. 
  • Form follows function when it comes to clothing. If it’s not comfortable, I cannot stand to wear it. I often cut tags out of my shirts, and have occasionally cut collars on t-shirts to be lower so that they weren’t as close to my neck. I’ve been known to trim scratchy inner hems. I dislike wearing pants (as any of my previous roommates can attest), and I dislike wearing shoes (as anyone who knows me can attest). 
  • Eye contact actually doesn’t come easily to me. It’s much easier onstage, but in real life, I have to remind myself to consciously do it during other interactions. I also have to consciously remind myself of the rules of casual conversations, especially if it’s with someone I don’t know super well. (If they ask you how your day was, ask them the same thing back. Conversation is reciprocal. And also, not everyone is interested in the random trivial fact you learned on a podcast today.) 
  • In fact, I uh…I rehearse social interactions ahead of time. For a long time, one of my deepest secrets was that I’ve rehearsed jokes or stories or conversation bits before telling them for like, most of my life. I’m only comfortable sharing this now because I’ve learned that lots of other people do it. 
  • I have a list in my phone of conversation starters and reminders to help me navigate social situations where I don’t know people as well. Topics to bring up, questions to ask, etc. 
  • I’m easily overwhelmed in loud, crowded areas. When I’m sitting in a theatre before a show (as an audience member), I usually have to put in headphones and play white noise to keep me from like, freaking out. I’ve also used headphones and white noise in grocery stores, on public transportation, and in airports. 
  • Repeated soft touch on one part of my skin sometimes feels actually and literally painful. One or two brushes of someone’s fingers over one part of my arm = lovely. Repeated touch of the same kind in the same place = torture. 
  • Spontaneous social interactions are hard for me. 99% of the time, I need a day to sort of emotionally prepare. It’s not that I don’t love people, it’s just that 1, the disruption in my plan for the day is difficult, and 2, social interactions take a lot of work for me and it’s hard to jump in really quickly. 
  • Walking on my tiptoes. I don’t do this one quite as much nowadays, but I often walk on just the balls of my feet. 
  • Always using movie/YouTube/TV/TikTok/etc quotes in conversations. (Or, more often, thinking them and not saying them, because if people don’t know the reference, it often gets in the way of actually connecting with other people, which is the goal of conversation. And also because I don’t know how to explain that the thing I just said is a reference to the blooper reel from an early 2000s British sitcom that I’ve watched dozens of times with my sister.) 
There are also a few things that could be classified as just kind of quirky personality traits, but I see them in a new autistic light nowadays. My deep love for forms, spreadsheets, taxes, and organizational documents of any kind. The meticulous tidiness of my room and/or desk. The game I play in my head when I’m buying something less than $20, when I try to think of a historical event that took place in the year of the total. ($14.92 = Columbus sailed the ocean blue.) 
I also have a few common morbidities with autism. I have an auditory processing disorder and misophonia. And hooo, boy, do I have a history of anxiety and depression. 
And each of these things on their own are kind of just quirky personality things, but put altogether, it looks a hell of a lot like autism. 

(Okay, quick note: Most of what I've described would likely be classified as Asperger's Syndrome, which is a part of the autism spectrum. If autism is the tree as a whole, Asperger's is one of the branches. Asperger's doesn't require as much support as other autism diagnoses, but it's still autism. "Aspie Girl," the phrase used in the title of this blog entry, is a nickname for women with Asperger's Syndrome. Some folks don't like using the shortened nickname "Aspie," or using the phrase "Asperger's Syndrome" at all, mostly because Hans Asperger was a Nazi eugenicist shithead and also because we understand more about how Asperger's Syndrome is one type of autism. I'm comfortable using "autistic" to describe myself, and even though Asperger himself sucked, I like the way "Aspie Girl" rolls off the tongue, and I also like how it makes me sound like I'm part of a cool gang of femme people who roller skate and solve crimes and stuff.)
I’m a little uncomfortable calling myself autistic without an “official diagnosis.” But it’s not like I took one BuzzFeed quiz and decided I was autistic. I’ve spent months reading articles, visiting websites, using diagnostic tools like the RAADS-r test, listening to other adult women with autism, and speaking about it with other autistic folks. 
I’m currently in the process of seeking a formal diagnosis, which is…difficult. One of the clinics I called is booked until the year 2024. And women who have “mild” autism (like mine) are often dismissed or overlooked, so I want to find someone who specializes in autism in adult women, which is not easy. I also understand that if I am not diagnosed as autistic, that could also be accurate. It just…it really seems like an accurate diagnosis to me. 
When I told my roommate some of these things that I did and still do, she looked at me incredulously and asked “How did you not know?!” And I replied that I didn’t know because I’ve never been in anyone else’s head! I’ve only been in mine! And also I was born in 1985 and getting an autism diagnosis as a girl in the 1990s was unheard of! 
So now, at age 36, I’m navigating the very high possibility that I’m a little bit autistic. My therapist pointed out that I managed to white-knuckle my way through a lot of distress in order to have connection with my fellow human beings, and that I was able to find some helpful coping mechanisms just on my own. That’s worth celebrating. 
Does this change anything about my life now? Not really. 
Just kidding, I’ve been going through ongoing loops of identity crises, research and self-education, and re-evaluating every single aspect of my life. This also means that all of the social confidence I’ve developed over the last 20 years has frayed at the edges a bit. By my senior year of high school, I’d become confident enough that I could enter into social interactions with very little anxiety. A lot of that anxiety came back after getting divorced in 2017, but nowadays it’s like…middle school level social anxiety, 60% of the time. I’m hyper aware of how I act in every interaction I have with other human beings, while it’s happening, which means that the interaction itself sometimes gets weird because I’m aware of how I act and it’s just a strange, endless loop. 
Shout out to anyone who has become friends with me over the past six months or so. 
“But Liz, you don’t seem autistic at all!” Maybe not on the outside, I don’t. And maybe not to you. That’s probably because I’ve spent the last 20 years learning and practicing normalcy really really hard. (Also, I thought the same thing but then I learned more about autism.) 
But here are a few of the good things that have come from this journey. 
I have enormous compassion for little Liz. That weird girl with un-brushed hair who was reading by herself throughout school was doing the best she could with what she had, and no one had the tools or knowledge to help her navigate a world that presented challenges for her. I see her isolation and confusion and pain in a different light, and now I can reach back through time and offer so much love and patience to that young girl. 
And some of that sense of isolation has been lifted as well. When I first began my journey with a possible autism diagnosis, I felt this strange sense that the diagnosis would erase my experiences growing up. Like if I was autistic, I was just like a bunch of other people, instead of an unusual, otherworldly creature who single-handedly figured out how to connect to others on her own terms and was more highly evolved than her peers in middle school. I had come to embrace my strangeness as something beautiful that I then grew out of. But nowadays, I see things differently. I can still be an unusual, otherworldly creature…it’s just that now I don’t have to be alone in it. I get to keep the strangeness, but let go of the isolation. (I also now understand that I’m no better or worse than my peers…we just had different tools and experiences.) 
And I’ve seen this as an opportunity to embrace my strangeness and my needs. I follow a couple on TikTok who both have autism, and they posted a video about how one day, they just decided to be themselves, in all their strangeness. To not hide their wild, unusual quirks, and to live bravely as exactly who they are. Hearing this didn’t change a lot about my behavior, but it lifted a lot of the shame and embarrassment I had about my behavior. Okay, so I need some time to prep for social interactions! That’s a legitimate need and not a character flaw. So I’m a picky eater. So certain kinds of touch are painful to me. So I need headphones to help me not meltdown in large, noisy crowds. ALL OF THAT IS FINE. I’m allowed to have those needs and to speak them and to do what I can to meet them. 
And that’s actually true whether or not I get an official autism diagnosis from a licensed professional. That’s true of all of us. We’re allowed to give ourselves tools to navigate the things in the world that don’t work for us. We’re allowed to look back in time on our younger selves with compassion. We’re allowed to like what we like and dislike what we dislike and be our weirdest selves. 
Connection with our fellow human beings is still possible when we do those things. And the more we are our truest selves, the more authentic that connection will be.