If you know me, you’ve probably seen or heard me refer to myself as a robot. An alien. A cryptid. An android. And, when I am feeling human, a bad person. I learned recently that this is common among people who discovered their autism later in life.
Full disclosure, I haven’t been diagnosed with ASD by a professional [UPDATE 9 Sept 2020: I did end up going through the testing process, and I do meet the diagnostic criteria for Autism Spectrum Disorder, Level 1]. It’s difficult to diagnose in people who aren’t boys, and I only started looking into getting diagnosed when the COVID-19 pandemic hit. But I’ve spent the last six months taking autism screening tests, reading first-hand accounts, talking to diagnosed autistic people, and watching YouTube videos of people like me (here is a particularly helpful channel). And who I am has finally started to make sense.
I’m writing this because those firsthand accounts helped me see myself and how I operate in the world more clearly than I ever have, because hearing firsthand lived experiences helps me far more than clinical, pathological terminology tailored to a particular subset of the autism population.
These little pieces of evidence might apply to many people. It’s when you start to add them up in my case that it seems so obvious. People refer to the “spectrum” but that can be an unhelpful oversimplification, because autism isn’t a linear spectrum. People aren’t really more or less autistic. Autism is just a set of traits that affect social interactions and restrict behavior, and it looks different in different people. Certain traits (like mutism, outbursts, obvious stimming, no social masking) make people, including doctors, pathologize autism more readily than one might with the set of traits that I have.
But the truth is I struggle to function a lot more than people see from the outside, because I’ve gotten very good at masking and, quite frankly, my intellect covers up for a lot.
According to the NHS, autism in adults is commonly marked by: an inability to understand what other people are thinking or feeling; difficulty expressing one’s own feelings; difficulty making friends or preferring to be alone; seeming blunt; having social anxiety; avoiding eye contact; not liking touch or when people get too close; noticing certain sounds, smells, and patterns that others don’t; having a keen interest in particular subjects; and liking routine.
All of these things describe me quite well. Some of these might describe you, and some of them are symptoms of psychological conditions. And that helps, because in spite of how I often feel, it’s really not some alien disease.
The Emotional Parts
- I definitely have the personality trait known as alexithymia, which is common in autistic people. Alexithymia means I don’t recognize emotions in myself or others, and I can’t describe them. A while ago, a meme went around after Carrie Fisher tweeted “it hurts all 3 of my feelings,” and it was a joke, but that’s pretty accurate for me. I can sometimes recognize anger, but everything else I feel pretty much falls under “neutral” or “bad.” When people talk about wanting to be happy, I genuinely don’t know what that means. I wouldn’t recognize if I’ve felt it.
- There have been many times in my life where a friend has told me about a problem, and I have not understood if or why they were upset. I’m not good at reading emotions on faces. I often can’t tell if people like me or don’t like me.
- I’m not incapable of empathy (a misconception about autistic people generally), but for me, admittedly, it’s more of an intellectual empathy. My inclination is to systematize and to tell you that you feel the way you do because the social systems present under late capitalism want you to feel bad. (I’m right, but I have found that people are not comforted by this.)
The Social Parts
- I hate eye contact. Hate it. I avoid it and I’m sure that makes people uncomfortable, but I don’t care.
- I’ve been called “weird” by people my whole life — sometimes cruelly and sometimes affectionately (I think?) — but I have never known what it is about me that makes me weird. I’ve always felt different but just that something was off that other people could see and I couldn’t.
- Sometimes I’ll notice that people have an immediate aversion to me, even after just meeting me and before I’ve put my foot in my mouth. Being asked to form small groups at school, work, etc., has almost always led to my exclusion. I often feel invisible.
- I have a Rolodex in my head of Normal Human Conversations™ and things I've heard other people say, which I use when I need to — though I get myself into trouble sometimes for repeating the wrong thing in the wrong situation to the wrong audience. I actually like small talk with cashiers and waiters because it is totally predictable, and it makes me feel like I’m a real person because I actually know the script.
- I hate making phone calls. (I know a lot of people do.) I hate that I have to read a situation with no other cues. But hold music specifically puts me into a severe state of anxiety because it’s too unpredictable. I don’t know when my call is next, so I can’t prepare for it.
- I was a know-it-all when I was a kid when it came to my particular interests. I corrected my teachers even when I was in elementary school. (I remember in first grade explaining to my teacher that all the gas giant planets have rings.) But since then I have actively worked on playing dumb to stop myself from being seen as a know-it-all or the robot.
- I like being alone. Genuinely. I’ve tried to be in romantic relationships, and what always happens is that I just never feel quite like myself. I only feel like myself when I’m by myself.
- Many autistic people who were socialized as girls/women feel like they lack a gender, which is how I’ve always felt.
The Sensory Parts
- I’m very sensitive to smells (perfumes, incense, metals, certain foods, etc.), to loud sounds (ambulance sirens hurt) and sounds other people don’t notice or aren’t bothered by, and to the feel of certain textures or clothing on my skin (socks that hit in the wrong place, sleeves that touch my armpits, clothing tags that feel like they’re cutting into my skin).
- I cannot talk on the phone in public or in a room with any other noise, because I cannot isolate foreground noise from background noise. When people make phone calls on the subway, I’m baffled. I find being in loud bars physically painful. It’s excruciating when people talk over an already loud television.
The Routine Parts
- I think I’m actually pretty good at rolling with the punches, but I will immediately set up a routine for myself in a new situation. I have a nutrition app that I have logged into for 2410 days in a row, if that’s any indication of how much I like routine.
- I’m not good at planning things in advance, because I lack some executive functioning, but I do like predictability in my day. I am delighted when I recognize the same people on my commute day in and day out.
Why Didn’t I Know?
- I have always been a very good mimic and a keen observer, which means I have been able to mostly mask the traits that I recognize aren’t “normal” or “acceptable.” I don’t look much like my sister, but we have the same speech patterns and physical movements. And it’s not just genetic, because I consciously copied her. I mimic other people, too, beyond mirroring out of a natural empathy. I do it consciously to fit in.
- My stimming behaviors weren’t obvious (I don’t flap my arms or clear my throat). I was always fidgety, but no one noticed or wasn’t alarmed that I fidget in very specific ways — I didn’t even notice for a long time — and it’s not that I have lots of excess energy, I need to do these things.
- I could make friends. I still have friends somehow (I think?). But I didn’t and still don’t always feel like I fit in with my friends. I struggle to initiate social contact, even just to text someone first. And I’m still not sure most of my past (or current) friends even liked me or they just tolerated me because for them having other people around was better than not. I like myself, but if I were someone else, I don’t think I would like me.
Confirming My Alienation
One of the hard parts of this has been realizing that I feel alienated from humanity because the way I experience the world is actually a little different. And I’m different enough that I routinely, throughout my life, have had other people deny my experiences, tell me that how I experienced something was wrong, that I’m being weird on purpose. And this has led to me avoiding social encounters, to not contributing in class discussions or work meetings, to convincing myself that I should not try to publish my writing or share it at all, and even to feeling like I don’t exist, like I’m not real, that who I am is wrong.
Another hard thing has been questioning my relationships with other people and my lack thereof. It’s hard to make and keep friends as an adult for many of us. But I’m pretty sure I’ve lost friends because of my systematizing mind and less than sympathetic demeanor. I think it’s pretty common for people to drift apart once they are out of the same context (school, work, fandom), but I have trouble relating to others just as a person. I don’t seem to want or have the same things in life that others do — a significant other, kids, pets, a career path, a house, wealth — so I have a hard time connecting with people. But I don’t feel like I’m lacking these things. What I do feel is that I’m not supposed to be okay with this. I feel like there’s something wrong with me because I don’t want companionship or a dog or a “leadership role” or a six-figure salary.
Things I thought were true about myself suddenly have a different explanation. I don’t think I’m really introverted — it’s more like I was forced to become an introvert because I didn’t want to stick out as a kid. And now as an adult it’s hard being around people I don’t know very well, so it’s always partly a performance. It takes a lot of effort to not fidget, to sit normally, to not stare at the ground or the table, to make sure my face doesn’t go totally blank, to come up with something to say in a conversation that’s relatable and fits the mood and not “weird.”
It also means accepting that some people simply think I’m mean or cold, particularly when I don’t react in the “right” way. It means being pitied by people who don’t understand that being alone, childless, and petless is the best and most comfortable situation for me. It means I’ll never have the sense of community that I believe is politically necessary, but I just don’t form strong in-group associations. When I see signs for book clubs or community events where “everyone is welcome,” I just don’t think they apply to me.
It has also been hard trying to see myself as a human and not reduced to a neurological condition. Autism helps explain things, but it also feels like it’s been confirmed that I am a robot. People talk about autism like it’s both an identity category and a disease in need of a cure, and not just a different way of interacting with other people and with the world. It’s hard to read articles about alexithymia and see it described as a personality deficit, as something that is “suffered.” And even though anti-vaxxers are demonstrably wrong, it’s hard to hear what is essentially: I would rather my child die than have one like you.
I think the hardest thing for me, though, is that I try very hard to understand other people. I’m not sure I do a great job at it, but that’s why it’s extra frustrating when I’m not understood in return. And I get that maybe no one can understand without first-hand knowledge of ASD, but I still try to understand people who aren’t like me. I adjust who I am so I don’t make other people uncomfortable by my mere presence. But somehow that’s never extended to me — to the weirdo, the bad person, the robot.
