Wednesday, July 28, 2021

I...think I might be autistic after all?

 I have known I'm not quite like most people for years and years. For a while I identified as "highly sensitive," then as "probably sensory processing disorder." Whether any of this fits into the autism spectrum is a harder question. The autism spectrum is broad, not just in severity but in actual traits. These days, you don't need to fill out every trait for a diagnosis, just a certain number. The result of this is that you have autistic people that are far more different from each other than they are from neurotypical people.

I don't love this. Treating these disparate conditions as one thing means that my children, when I say they are autistic, are always assessed based on the most classic symptoms and then told they "must not have it that bad" and therefore don't need help. Jackie's speech has been tested and found normal twice, and it may disqualify her from special ed preschool this year. Because autism includes language delays and she has none. The teachers don't seem to be very knowledgeable about the other things autism can entail, like emotional dysregulation, lack of adaptability, need to be in control, difficulty playing with other kids. I like to think that in the future, autism will just be the broad umbrella, and we can have "type 1" for verbal delays and spatial genius, "type 2" for typical speech but spatial problems, "type 3" for social and emotional issues without the other things, etc.

But we're not there yet, and in the meantime I'm left finding a lot of autism stuff relatable and other stuff completely alien. There are autistic people who don't know how they're feeling (alexithymia) and I analyze to death everything I'm feeling. There are autistic people who are uncomfortable with things that aren't black and white, whereas I see so much nuance in everything I can't complete a personality quiz. Would I rather be in a garden or in a city? Well, wouldn't that depend on the mood I was in? Do people think of me as the life of the party? I don't know, I suppose I would have to ask everyone I know.

So I think I'm going to write a post listing out things that have made me think I may be autistic, or a little autistic, or on the trailing edge of the spectrum, or whatever I feel like I can get away with without being too inaccurate. Really, I would like a professional to tell me, but getting diagnosed as an adult, especially as a woman, is incredibly difficult. Not many people do it, and you pretty much have to do all the digging through your life and your brain yourself. There's no blood test or brain scanner or even convenient puzzle you can get graded on. (Perhaps there would be, if autism were one thing instead of like a dozen things.)

The reason I've always resisted describing myself as autistic is that I don't feel that I'm disabled. All the definitions of autism include that it has to be disabling, it has to interfere with your normal functioning. I do pretty okay for myself, so it just doesn't seem right to claim an identity belonging to people who need significant help. But I do feel that autism can't be about what you can't do. It's about the way your brain works, the things you need, the things that bother you. If you have the things you need, if your environment works well with your brain, you're not disabled, according to the social model of disability. And isn't that the goal for every autistic person, to have everything they need to accomplish what they want?

I'm realizing more and more, as I read stories of autistic adults, that I have had so many things they didn't have. I had a supportive childhood that didn't demand of me much that I wasn't able to do. I have chosen small, manageable social spheres. I have never lived alone. I have only once in my life had a job that wasn't handed to me based on connections. Most of those have not been full time. This works great for me, but it doesn't tell you anything about what I would have been able to manage with a less than optimal environment, if I didn't have so many privileges. 


The first thing is my emotional regulation. I have always seemed to have more feelings than everyone else. As a kid I cried all the time, loudly. My mom once told me the reason nobody had any sympathy when I cried was because I just opened my mouth and bawled instead of trying to cry like a lady. I remember being confused. If I had control of what I was doing, I wouldn't be crying!

In the fourth grade the teacher nicknamed me "The Perpetual Frown" because I cried at school so much. (Bugger off, Mr. Wells.) In the fifth grade, my teacher took me into the coat room to ask if there was something wrong at home, if something was bothering me. I told her my uncle had died, which was true if several years out of date. I just felt like I had to have some excuse or she'd never leave me alone. Later, she dismissed me for lunch early and kept everyone else back. I assumed they were in trouble. In reality, she had told everyone they had to be nice to me because I was having a tough time and had no friends. Thanks for the thought, Mrs. Pfahl, but you might have predicted somebody would tell me everything.

In boarding school it was worse (because of the psychological abuse, obvs). I cried and cried. I learned to cry quietly, but I still cried all the time. I remember once I was expecting to get to sit down and eat dinner only to get pulled into the kitchen at the last minute to wash dishes instead. I sobbed and sobbed. I felt like my heart would break.

It was called, at the time, "emotional immaturity." I was told I would someday gain the ability to manage my feelings the way everyone else did, that I would be able to control them somehow. And I did stop crying all the time, after boarding school. At first it was mainly severe depression, but after that I felt like my feelings did settle down somewhat. It felt like there was a space between the inside of me and the outside, that I didn't have to let things out if I didn't want to. Or sometimes, I couldn't let things out at all. I don't really laugh when I'm alone. I usually can't cry even if I want to. But if I'm startled, I'll let out a reaction I didn't intend, sometimes a larger one than appropriate. Thanks to Zoom, I now know that I look extremely angry when I'm trying not to cry. That's not my favorite thing in the world.


I don't like the word rigidity. It sounds very negative, which is of course how it's perceived. I'd rather say that I love the things I'm used to, that they make me comforted and happy. You know how, after a long journey, you see the lights of your house getting closer and feel glad? I feel that about all my familiar things. I don't always think about how important they are, but this move has brought home to me how badly I function without them. It made me angry that the couch wasn't how it used to be. I had trouble drinking water because my favorite cup was lost in a box somewhere.

When I was younger, I was a lot more adventurous. My life was already very familiar so I felt willing to branch out. I think that's true of autistic people in general. Routines are comforting; if things are good, you don't need the same degree of comfort and are willing to be flexible. When you're having a hard time, though, every little change is going to be a big issue.

Sensory processing

The diagnostic guidelines barely touch on sensory processing, but to me they're almost the heart of autism. If you sense things differently, you'll react all kinds of different ways. And the sensory side of autism is the thing I relate to the most; I know I have serious sensory issues.

I'm hypersensitive to a broad array of things: textures, noises, smells. Some of them are very easy to explain, like loud noises or crowds. A lot of people don't like those, though most of them seem a little better at putting up with them. Others are just weird, like I get goosebumps all over my body if I even think about touching velvet, and my entire day was ruined once by King George's song in Hamilton. It just feels unsatisfying somehow? Like you have to keep singing it forever to get to a resolving chord but there is none. Ten years ago I loved pop music because it was devoid of those progressions. Now they're everywhere and I hate them so much.

I have two sets of clothes: the aspirational stuff I bought because it looked nice and I imagined being a person who would wear that, and the stuff I actually wear. The set of things I can wear keeps shrinking and shrinking. I basically live in cotton t-shirts (NOT cotton blend, UGH) and my gray elastic-waist shorts. I'm becoming intolerant to my only pair of non-ratty jeans because they slide down, but I also can't wear high-rise jeans because they make me feel smothered. I can't wear anything tight, especially on the armholes. I usually can't wear hats or scarves. It takes me about a month of winter to get used to wearing coats, and I sometimes try to get away with a light hoodie (pure cotton. no fleece lining) till it's below freezing. I don't just like being comfortable, I'm actively miserable when I'm not. I wouldn't even wear heels to my own wedding.

It takes me a second to process things. If I'm walking along the road, I walk slowly and look at everything. If I can't do that, I have very little notion what I saw or where we've been, and I end up feeling stressed. When I was a kid, I tried various sports, but I just can't keep my eye on the ball. It goes too fast. I got hit in the head with balls way too many times. I can't play any video game with a first-person camera; I have no idea where I am. I can't listen to audiobooks. Watching TV, I miss about half of what is said unless I put the subtitles on. Walking around the house, I constantly bump myself on things. I'm scared to go downstairs holding a laundry basket because I can't see my feet.

This is the part that severely limits what I can do. Things I can't do, or find so unpleasant that I never do, include: concerts, fairs, movies in the theater, going multiple places in the same day. When we were showing the house and had to be out all day, I was miserable. I have never liked going to work. Only now that I have a job from home, I'm discovering I don't dread going to work or collapse in an exhausted heap when I get home. Teaching is especially exhausting; I don't think I could ever go back to it. In college, both times I tried to add one (one!) extracurricular on top of my classes, I got sick and had to quit.

Executive function

These days, the internet is full of stuff about executive function, to the point that I'd almost wonder if anyone is actually good at it. Except that my husband is; he's like my executive function doula. He knows when the bills are due and when the car needs to be inspected and he never, ever loses his keys.

That's, uh . . . not me. It took me two years once to call the dentist after my tooth started hurting. I carry tons of to-dos around inside my head all day, because I can never manage to write them down. I drop balls all the time. It was my biggest flaw as a teacher, forgetting who had missed a day and whose parents wanted me to call them back. I didn't plan my lessons, I winged them all. In school, homework sheets exploded out of my backpack, but were somehow never there when it was time to turn them in. When our notebooks were collected for a grade, my literature notes were just a title and some doodles. I leaned hard on raw intelligence to succeed in school despite never knowing there were tests coming up and writing all the papers the day before. But once you're an adult, raw intelligence doesn't count for very much. You have to actually remember what day yearbook money is due.

I'm getting better at this, because I have to, but it's still one of the biggest challenges of my life. I constantly miss work meetings I am supposed to zoom into; my boss is luckily tolerant of it. I was supposed to call the elementary school after two-thirty on Monday; it's Wednesday, and though I remember it now, I wouldn't lay odds on me remembering after 2:30.

My current job is so great. It might take me an hour to get in the zone to do anything, but once I'm there I pound out an article in a couple hours. I might, however, forget to eat. When working on a novel, I used to go five hours or longer without a break. I don't have trouble with focus if no one interrupts me. I have a lot of trouble switching from one task to another. Sometimes dinner is late because I was doing a puzzle, and I knew it was time, but I had to fit one more piece, and one more piece, WHAT, it's six pm.

Social skills

This is the thing that always gave me pause. I can't be autistic because I function really well socially. Don't I?

Well, I admittedly didn't in school, but that was because I was homeschooled. Everyone somehow picked up on me being different and was mean to me. Complaints I remember: that I talked to myself, that I talked like the robot voice of a talking car, that I dressed funny, that my hair was messy, that I smelled bad. These are all, admittedly, common autistic things.

One time all the cool kids decided to be nice to me and invite me to play Truth or Dare. I assumed that I had finally been there long enough that I was going to be accepted, and joined right in. Turned out they just wanted to quiz me about stuff like who I liked, so they could torment me about it. Was that a lack of social awareness?

In high school everyone was nice to me, because it was the rules. I knew I was not one of the coolest people, that the consecrated had decided I wasn't "leader-type," and I'd been told more than once I talked too much, hogged the conversation, was too loud. Other girls found me funny and happy and charming, but a little weird. The consecrated made it their mission to make me normal, including a lot of explicit teaching about hygiene and hair and fashion and conversational turn-taking.

College was great for me socially. You'll never find a denser concentration of weirdos obsessed with all the same things I was at the time. I had so many friends. I couldn't stay up late like they could, but I always had someone to hang out when I wanted to.

I have not really made friends since then. My friends are all my old college friends, or people I didn't hang out much with at college but at least knew. I keep trying to make other friends, but it never seems to work for very long. I have tons and tons of online friends. In person is so much harder, not least because of my other challenges. Hanging out with kids is a very hard sensory experience; you're juggling attending to the kids and attending to the other person, and switching my attention like that exhausts me and makes me itchy. Hanging out without kids involves a lot of advance planning and executive function. I say, "I'll check with my husband and see if he can watch the kids that day," and then I don't.

I don't know if I make eye contact right. I do look at people's eyes briefly and then look away. Isn't that what most people do? I remember getting in trouble for disrespect when I made eye contact with a teacher who was chewing me out for something else, and getting yelled at by a girl who said I "had a staring problem." So I guess I'm a little afraid of looking at people too long. I remember one spiritual director always looked straight in my eyes and it was the very worst thing in the world.

I'm bad at turn-taking in conversations. I spend a lot of effort trying not to talk too much, but dead space makes me anxious so I tend to leap in and fill it. I know I used to just talk a mile a minute and people couldn't get a word in. In groups of more than two, I really struggle. The gaps you could jump into are so tiny and gone so fast. And they change topics all the time! I hate having something interesting to say, but it's about something three topics ago because the conversation wandered. I want to talk a subject to death before moving onto the next.

A lot of the things autistic people say on this, I don't relate to. I very much like small talk, at least small doses of it with strangers. I'm always anxious in public, and if a kindly stranger tells me that I have a lot of children, it cheers me up somehow. Like oh! this person is being friendly with me! I guess I can survive this after all! I hate mask wearing because nobody smiles at me. I am not blunt. I lean hard on etiquette and social scripts; if you ask me how I'm doing, I would sooner die than say anything other than some version of "oh, doing all right, how are you?" Saying things that might upset people is very hard for me. I read a lot into what people say, and I would ten million times rather hint that I could use a hand than ask.

This part is the hardest for me to accept. Am I still a weirdo, and it's just that people are too nice to point it out now? Am I missing something everyone else is getting? I spend a lot of effort understanding people and trying to fit in. I don't want to admit I'm not good at it.


As a kid, I used to chew on my hair. So my mom cut my hair, and then I chewed my nails. Then I got braces and I didn't have a fidget. In boarding school being fidgety was very much frowned upon. I don't think I really stim anymore. I do sometimes play with my eyelashes or sway back and forth when I'm reading. But this is one that isn't really such a big noticeable thing with me. Whereas Marko is so fidgety that he can be chewing on a random piece of plastic, pulling on his hair, and dancing around the room at the same time.

When I'm very stressed, though, like at the grocery store, I've started shaking my hands at the wrists, like I'm limbering up to play piano. It seems to shed a little of the stress somehow. I'm not really doing it intentionally, but I could stop if I wanted.

So am I or not?

I really don't know. This feels like a lot of reasons I am, when I lay it out like that. But getting a diagnosis sounds like an insurmountable burden. How would I find someone who even assesses adults? Would I have to call them? Get childcare? Make an appointment? And what if then they were like all the people I've dealt with for my kids, who say "well, they're smart, they're doing fine" and I hear "why are you wasting my time?"

I suppose what I should do is just be gentle with myself. Try to understand myself and give myself space for my needs. I do a lot of that already, which is why I don't feel like I'm suffering. I don't put myself through things I know I won't like. I don't commit to things I know I would flake on. I build a lot of down time into every day. I just need to try, as best I can, not to be ashamed of myself for needing to do that. Sometimes I feel really bad about the things I can't do, the things I've failed to do. I don't need a word for what I am to know I'm not choosing to struggle with things.

But would that be easier if I just said, hey, I probably have autism? If I joined autism groups and said, yeah, that's me?

You, the five or six people who still read this thing, know me pretty well. What do you think?


AJS said...

"I don't love this. Treating these disparate conditions as one thing means that my children, when I say they are autistic, are always assessed based on the most classic symptoms and then told they "must not have it that bad" and therefore don't need help."

Yeah, this is why a lot of autistics like to retain the term 'aspie'. The whole shift to a single 'ASD' classification was just the medical community admitting that they don't know enough about the underlying conditions to be more specific than the amount of assistance someone needs. The categorization they had used before wasn't necessarily based on natural categories. I don't know that we'll ever be able to get to the type1/type2/type3 classification stage because there just might not be clear clusters to group people into.

Sheila said...

Yeah, but "aspie" has the exact same problem. They had to lump aspbergers with autism because otherwise everyone insisted on giving the aspergers kids less support because "after all, it's MILD autism." No it isn't, it's autism without a verbal delay, that's all it means! Some people with classic autism outpace people with aspergers when it comes to things like self-care and independence.

Here's another area for research: a robust instrument for scoring an autistic person's wellbeing. Right now they measure everything by "symptoms" and claim to fix a child by training them out of the more obvious ones. What if we measured happiness, self care ability, academic performance compared to potential, meeting personal goals? Then we could maybe assess whether we are doing enough for autistic kids who need varying levels of support.

etteloc said...

I mean, if the shoe fits, what can it hurt? I think at best it helps you understand yourself in relation to the rest of the world. If you find yourself in need of support, it helps narrow down your options to the viable ones.

I found myself musing the other day that perhaps our children will push back at all the therapy and knowing thyself that's popular these days. I kind of doubt it, because I look at certain family members and think "All I want for you is for you to be okay with yourself." And that's really the crux of it all, isn't it?

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