Y’all, my exhaustion is exhausted. The internet wants me to think that this is the brain fog of the late pandemic, and it isn’t not that, but it is actually a whole other thing for me personally. And that thing is called “masking.”
Masking is the process of learning and implementing the behaviors required by neurotypical [NT] society so that they don’t throw rocks at you. I am very good at it. I’m so good at it that once I started telling people I had been diagnosed with Autism Spectrum Disorder [or High Functioning Autism] they fell all over themselves to say some variation on “but you don’t seem autistic to me.”
I am to understand that this is meant to be a complement to me. A statement about how I am “more normal” than the average person’s idea of what an average autistic person is. And intent is more important to me than what people actually say [even if understanding intent from what people say is terribly difficult for me personally]. But what the phrase “you don’t seem autistic to me” really means is:
- My preconceived ideas about what autism is represent all that autism is and, like, my privilege allows me to walk around not examining this
- Because you don’t fit that preconception the adjustment that needs to be made is your identity not my definitions
- We only really need terms/diagnoses like “autism” so that we can all place each other on a continuum of diminishing/increasing humanness instead of to make specific statements about the needs of individuals
- My assessment of you as more normal [read: more like me] means you pass the human test but others who are less normal do not: congratulations!
Probably when people tell me that I don’t seem autistic this is what they don’t know that they mean. Many of them don’t want to mean this in the same way that white people wanted to believe that racism was over because we had a black president. Even the well meaning people who are intending to make a statement about how my ability to pass as more normal must mean that I “must be higher on the spectrum than those ‘real’ autistic people” are missing the point. How I look to others is not really a representation of my inner experience. I don’t think it is for NTs either. For instance, medical literature is rife with examples of [mostly female bodied] people telling their doctor that something hurts and being told that there is nothing wrong. However, those instances are easier for NTs to understand because it is closer to their lived experience and more relatable.
Everyone has been told at some point that their inner experience is objectively a non-issue, and some of those instances are very traumatic, but my experience with it that has led to masking behaviors has the added layer of this disconnect being so thorough that I don’t even really trust myself or know if my subjective experience isn’t just sort of a hallucination. Sometimes I feel like I am really a homunculus that lives inside my “human” outer shell, only I don’t know this and I think my “human” shell is the real me and my life’s work is to convince myself and the real humans that I am also a human so they don’t lock me in a government facility and run alien tests on me or something – because you know they would and you would watch that movie and empathize with the homunculus instead of the humans [but you’re probably more like the humans].
This metaphor does no autistic people who are trying to argue that we are fully human any favors and I apologize for it, but the feeling still stands. I know that Oliver Sacks/Temple Grandin’s metaphor of an anthropologist on Mars is a more humanizing one. But it isn’t quite right because in that metaphor you know you are the anthropologist and you know you are studying Martians and the Martians know you are not a Martian, in my metaphor no one is sure who is a human and who is a homunculus – even the homunculi.
So when someone says “you don’t seem that autistic” what I feel complimented for is my ability to fully hide that I am a homunculus, or I feel complimented for erasing my real self from the view of others. “I know right? I am so completely excellent at not being myself. I can’t even tell who that is! I deserve an award.” It’s probably what it feels like to be a method actor.
But now that I know I am really the homunculus, my commitment to this charade is crumbling. I am really mad about it. “You took this incredibly sophisticated information aggregation machine and spent almost 40 years teaching it to do human tricks? What a waste.” In addition to the homunculus metaphor being regressive and perhaps damaging for autistic people in our quest to be recognized as fully human, my tendency to compare my brain to a computer is likewise problematic. I think part of my issue here is that there are not a lot of handy tropes for neurodiverse brains. We have been otherized from the start and it is hard to not otherize ourselves. What I am trying to say is, I’m damned pissed that instead of achieving the highest level of me-ness possible, I have spent my life up until this point trying to let the most “me” out into the world that other people can tolerate and keeping the rest of it hidden from view. What makes me angry is what I could have done if I had not had to spend so much mental energy doing what I did.
As an example, today a well-loved and respected friend from my church community asked me to do something that I thought was really stupid and a waste of time. I’m not the final authority on what is stupid or a waste of time, but I will say that one of my super powers is having a 6th sense for efficiency and optimization [NTs are good at intuition for people, I am good at intuition for systems and information – doubtless I will go into greater detail about this at a later point]. I know that when I read this email from my friend I should have just said, “sure,” I can’t really tell you why I didn’t just say “sure,” because I ended up doing the thing that I still think was dumb and a waste of time. All I can say about this encounter is that I knew “sure” was a lie, it felt wrong. Wrong like breathing in water instead of air feels wrong, not like wrong because it is illegal-wrong.
As an aside, I like written communication because it gives me the split second to see what I am saying on a screen and read it back to myself before I hit send. And in that second I re-read what I wrote and thought “holy shit that reads as hugely disrespectful and a bit mean and I CANNOT say that to my friend.” If I had been standing next to her I would have said the thing, heard it was wrong, but it would have been too late. I would have hurt my friend! Thanks internet. Phew. Anyway…
Five minutes later in my mental time but 45 minute later in Mountain Daylight Time, I had written an email that thoroughly communicated respect, found a way to apologize for doing something that I still think was smarter and more efficient, and then for good measure did the thing she asked that I still don’t think was the proper thing to do. In the fullness of my life’s time this interaction doesn’t matter at all. I know that. It is more important to preserve my relationship with my friend over taking a stand about something that I think is “wrong” because it was not as though she was asking me to electrocute baby seals, or even to shoplift from a major retailer. I am actually excellent at this sort of moral utilitarianism. However, the work to negotiate all of that – to care more about my friend’s feelings than my own instincts – is very taxing.
How taxing? I am ready to take a nap now. Like a full-on, facedown with my shoes still on, nap. But I can’t take a nap because this happened before lunch [and miles to go before I sleep]. It is worth mentioning that in the average work day I have to negotiate between 25 and 100 of these interactions. And the best part is that if I continue to be a good girl and do it well my reward is that no one knows what my inner life is like! You all stay fooled and it doesn’t look like there is anything off about me. Before my diagnosis I didn’t know that everyone didn’t live every day like this. Well, I had an inkling that I was different from other people but I thought the differences could be plotted as a linear relationship not a logarithmic one.
In the parlance of the internet, I was basically today-years-old when I learned that there is almost no cognition for an NT that goes into sending the email it took me 45 minutes to write. That work is very real to me. Because so much of real life is [until Covid] experienced in real time, face-to-face, I spent even more time before the pandemic pre-agonizing about things I knew I would not know I had done wrong until I had already done them and all the people who would be upset like I did that to them on purpose because I am such an insensitive, heartless bitch. Whole years of my life have been lost to trying to prepare for irl encounters that I knew were coming the next day and how to practice making my actions in those moments look natural and intuitive. That is so much time. I want it back.
When I was younger and I was on the cusp of being declared officially too weird that it was a problem [before middle school] I didn’t worry about things like this. I just “did me,” as they say. Favorite hobbies included: writing a novel before I was 14, cataloging plant life in my journals [this was before I learned about the existence of botany – something insane to try to think about now], doing my regular math homework in base-13 after I finished it in base-10. Don’t worry I also watched a lot of TV and stared off into space. But for me it was hard to tell that there was anything developmentally abnormal going on. I had “friends” in elementary school even though I was odd, because I didn’t seem that odd. However, once puberty hit, the level of social sophistication jumped up a notch and suddenly I was not meeting milestones.
Of course there are no charts for parents of 13 years olds about what social and intellectual milestones are. We leave that stuff behind once kids start drawing pictures with faces, and properly conjugating irregular verbs, and counting past 20. I think there definitely should have been those charts though, because someone would have stepped in and been like, “oh, something is not quite lining up how it should. She doesn’t understand the complex social behavior of shallow compliments about physical appearance and can’t tell white lies to be polite. Maybe she doesn’t know what politeness is for.”
Because I am very smart people just thought I was difficult, not that I was having difficulties. And, because I was very smart and able to eventually figure almost everything out, I too assumed that I must be defective not that I had a deficit. Deficits, as the reasoning went, were mostly for people lower on the hierarchy of humanness. I was acculturated to believe that as a very smart person I was the most human and nothing should ever be that hard, therefore if anything really was hard for me that must be how hard it actually was. This is some super fucked up reasoning, btw, I get that. It isn’t how I think about it now, but it was a serious barrier in my understanding that people with differences have different needs [it’s society’s current barrier in understanding this too].
But no, it’s more complicated than all that. Now, I am 38 years into this gig and I wonder, “how many things that I do every day are really things that I like or are ‘me’ and how many of them are adaptations I have made to make it easier to be the homunculus in the human suit avoiding detection?” Obviously, it’s impossible to peel that all away now. People are always like, “Jemma you’re so organized, can you organize this for me?” Fuck no. I am not organized. If my phone didn’t yell at me all day about the things I told it yesterday to tell me to do today I would still be in bed at 11:40am, hungry and unable to tell what I should do next. I am not naturally organized or orderly, instead I have a complex choreography of routines in place to make sure that I do all the shit other people expect of me. I have a pretty hard time figuring out what I expect from myself if I didn’t have to perform humanness for others. But I can’t just put down this illusion that I am organized because I figured out it’s a lie. I still have to do that. Just pile it on to the cognitive load.
Sometimes I think that if there was some way to know at 10 that there was something different about my brain and that there was a very high price for trying to get it to behave like other people’s, I would have chosen not to do it. That I would have been more myself. But of course, that didn’t happen and myself is the person I am now. A very tired and somewhat resentful person [even though I understand that in 1990 no one had any context for my diagnosis because I didn’t have visible tics or an appreciable language delay – in fact my written language acquisition was very early]. I want to take off the mask, the human suit, but I suspect that because the human suit is made of meat like my homunculus body, we are now intertwined in some symbiotic way that means one can’t live without the other. Rats.
[I am almost positive that my life is the perfect speculative fiction film about what it means to be human. Please cast me as Scarlett Johansson – I mean, I know that is absurd, but please. I would also accept Natalie Portman.]
So when someone says “you don’t seem autistic” I almost can’t tell if that means I am not autistic. After my diagnosis, my mother so negatively reacted to the fact of the diagnosis that I had to sit in my therapist’s office and have her read the neuro-psych evaluation back to me several times in order to believe it again. I had to look at myself plotted on the Autism Quotient scale. Sometimes I still have to do this. It’s as if other people’s general impressions of me are more real than my lived experience. Because if other people look at me and see a person like them it must be true since the truth is made by other people. It was other people who said things like, “that is ridiculous” or “you’re overreacting” so many times and so uniformly sure of objective reality that they must have been right. Knowing now that all those people were describing their experience as objective when it was really just statistically more likely still burns a lot.
I suspect that the tyranny of the typical visits every person who is atypical and makes them doubt their sanity. In some way [though obviously not all ways] I am jealous of people who do not have the ability to hijack their information processor to pass as “normal.” I imagine that they get to be more of who they are. This isn’t really fair. I know that people who have visible tics and stims and are nonspeaking have other serious issues to deal with and a lot more blatant discrimination, but I am pretty sure people don’t tell them they are not autistic. Doubtless NTs have incorrect appreciations of the skills and abilities [and humanness] of people whose autism manifests differently than mine. But also what I wouldn’t give to slough of other people’s expectations for just a day.
In reality, I expect that my experience, though a bit extreme, is actually closer to almost everyone’s than even they know. I don’t really believe in a default human archetype that we are all slight deviations from decreasing in humanness as we leave the epicenter. Who would that ur-human even be [a white dude]? No, the idea of a default human is stupid. Actual diversity is the real norm even if it is more complex for creating scientific models and constructs of objective reality. I suspect that many more people need to come to terms with the relationship between their homunculus in their human suit besides just me and that in doing so we would all realize some greater human truths. But if that all seems too much, at least stop telling people they don’t seem autistic [or anything else you didn’t expect] when they tell you they are. It might save their life [and yours].