I figure out how people are feeling by studying them intently over a long period of time, making a mental database of their faces and tones and what mood they go with. It’s very hard for me to tell how new people are feeling, unless it’s super obvious. I need to see it in action in order to learn it, person by person. I never really thought much about it. I assumed everyone else worked the same way.
Apparently not. Last week, at the age of 30, I was diagnosed with autism by a neuropsychologist with more than 20 years of experience.
It’s not unusual for women to be diagnosed later in life, if they are diagnosed at all. I’m what used to be called “high functioning,” and what would now be called “level one,” or requiring very little support (as evidenced by making it this far without a diagnosis). But interacting with other people, particularly those outside my very small “inner circle,” requires a great deal of deliberate mental effort, especially if I want to appear like a statistically average human adult and not the weird little gremlin that I am. It’s not like it was news to me that most people don’t leave their home and think, “All right, time to act like a regular person now,” but it’s nice to have it validated. So if you’ve ever met me and are thinking, “Wow, that Victoria didn’t seem autistic at all,” thank you! It took a lot of effort, and I probably had to go home and be by myself for a while afterward.
I’m pretty good in social situations where I know my role, where I know what I’m supposed to be doing. That’s why I’m good at customer service. I have a job to do, and I know how a customer service professional is supposed to perform it (in a friendly, polite, efficient manner), so I can do it. It’s in the situations where I don’t know the game plan that I struggle. In every new social situation, I feel like I’ve been thrown onstage in the middle of a play, without a script, trying to figure out what I’m supposed to be doing and saying by observing all the other actors. Sometimes I figure it out. Sometimes I don’t. (I suspect that’s why dating can be so difficult for me; there’s not a set script or clear set of expectations. But that’s another column.) And no, the answer is not usually “just be yourself.” Being pure, 100% unadulterated Victoria is off-putting, especially to new people. I’ve learned this through trial and error.
And even when I’m trying, I still make mistakes. I say things that come off as blunt and hurtful. I’ve put my foot in my mouth more times than I can count. I do odd things that I don’t even notice until someone points them out to me. And as I’ve gotten older, “masking” – a cool new term I’ve learned that means pretending to be neurotypical, or what I previously thought of as “pretending to be a real person” – has gotten harder. It’s taken more effort and energy. Fortunately, my desire to fit in has also diminished.
There were other symptoms, of the “restricted and repetitive behaviors” category. Being able to happily eat the exact same foods every single day, ad infinitum. Distress when I’m thrown out of one of my daily routines. Dislike of surprises, even pleasant ones. When I was a toddler, my mom would have to tell me “the plan” at the beginning of every day; for example, “OK, Victoria, today we’re going to the park, then the library, then the grocery store.” And if we deviated from that plan – if, God forbid, we went to the park, then the grocery store, then the library – I would have a complete emotional meltdown. I don’t like being touched. I constantly fiddle with my hair, mostly by rubbing it across my face in a somewhat disconcerting manner.
And then there’s my emotions. I always thought I was broken, or improperly assembled, or missing something, because my feelings don’t usually seem to work correctly. I almost never cry, and definitely not when I’m supposed to. (Remained dry-eyed at my own beloved father’s funeral.) I feel things either too intensely or not intensely enough; I’ve been accused of being both robotic and too emotional. I don’t know if this makes sense to anyone else, but I don’t usually feel things in my body; I recognize that I’m sad, or angry, or happy, but it’s all in the brain. Sometimes when I’m talking with people, I have to consciously move my face to match the emotion I know I’m supposed to be expressing.
The best thing about being diagnosed with autism is having an explanation for all of that. (And I love clear explanations. Hmm, there goes the autism again!)
I wasn’t built wrong. I was just built differently.
Victoria Hugo-Vidal is a Maine millennial. She can be contacted at:
themainemillennial@gmail.com
Twitter: @mainemillennial
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