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I'm Autistic, and 'This Is Me'

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“I am not a stranger to the dark
Hide away, they say
‘Cause we don’t want your broken parts
I’ve learned to be ashamed of all my scars
Run away, they say
No one’ll love you as you are”
– excerpt from “This Is Me,’ from the movie “The Greatest Showman”

Since my diagnosis as autistic in December of 2015, I have found that the two most common reactions of people to my diagnosis are as predictable in some ways as I am. The first is a well-meaning and fortunately easily answered “But you don’t seem autistic?” And no, when the average person pictures autism it doesn’t generally come as a six-foot tall middle-aged woman holding down (more or less) a complex job; and yet, here I am. I even have a bit of paper signed by a doctor declaring that I am autistic.

The second question took me a little longer to figure out, until I realized it was more about the subtext: “Why did you seek out a diagnosis?” or, as the psychiatrist who eventually diagnosed me put it, “Do you feel that having a diagnosis would be helpful to you at this stage?”

“Well yeah,” I answered. “That’s why I’m here in your office asking to be tested, actually.” Pro tip: autistic people may have difficulty understanding sarcasm, but once we do, it can become a favorite thing. But I couldn’t figure out why he and many other people were surprised by my wanting to know if I was clinically different. Then someone elaborated a bit, by saying “I just don’t really believe in labels” when following up the question and the fog lifted a bit.

To most Americans, it’s important to be individual but not too different. Quirky is fine, as long as it’s quiet — there are parameters within which it’s OK to be weird. Good-looking but a little over-brained is a common male trope, super-clever but maybe socially awkward for women: think Spencer Reid in “Criminal Minds,” Will in “Good Will Hunting,” Velma in “Scooby Doo,” Lucy Liu’s character in “Charlie’s Angels.” Rain Man is too far; Sheldon Cooper of “The Big Bang Theory” rides the edge. It’s OK to empathize with him, but the humor comes when we understand that he’s incapable of seeing the world in a “normal” way, and how nice or sarcastic his friends are being about that at any given moment. We’re supposed to be ashamed of our scars, of being “broken.”

So I am not supposed to want to have a label that equates to “completely social incompetent, but funny sometimes.” That fails to take into account that, like the song from “The Greatest Showman,” this is me. The label doesn’t change who I am, but it helps me recognize myself and share that with others. Most importantly, it helps me forgive myself.

I was in third grade when my reading teacher told me it was a good thing I was going to be tall (yes) and skinny (not so much), because I wasn’t going to be smart, but I could be a model instead. In fourth grade my teachers helped me figure out a homework planner, and how to remember to not read ahead too far in our assignments to avoid confusion. In sixth grade I learned how to fake understanding math, which was boring and difficult — and it worked until ninth grade when I nearly ended up in remedial classes for math, but honors level English and History, both of which I found interesting. Smarts I had, but the work ethic was maybe a bit lacking at that point.

When I wasn’t in classes, I was either reading or trying to figure out why I couldn’t make friends. I had friends in preschool, but from the start of first grade until the end of fourth grade, none. I made one friend in fourth grade, Phoebe, who was the best friend I could have asked for; but she had more friends, friends with whom she had more in common, and she drifted away in ninth grade. Lunch was a lonely place for a long time, in spite of sitting in a crammed cafeteria.

I did find new friends in high school, eventually, slowly — some of the other misfits for various reasons. I resolved that in college I would use my new friends-making skills to make lots of new friends. Instead, by the middle of my second year of undergrad, I was frustrated and disappointed in myself for still not having this social thing down. My depression and anxiety, present to some degree from first grade, kicked into high gear and I ended up with almost incapacitating headaches.

I eventually gave up on being social within college, although I joined a club that did medieval re-enactment via fencing and found some fellow weirdos, though none of them were in my classes. We geeked out about history, fantasy and sci-fi over milkshakes and sandwiches after fencing practice, but I couldn’t help feeling that I was getting better at acting out a part of me, rather than being an actual person. A real person, I felt, wouldn’t have to rehearse what to say in every situation, didn’t have to act as one of the myriad flavors of normal in each different situation — they just seemed to do it, as if by instinct. An instinct I didn’t seem to have.

Clearly, if I worked harder, it would get easier, right? So I took the lessons I learned in college and applied them, first in my job, then in vet school. And it worked, in a sorta-kinda way. I had people to eat lunch with, people I wasn’t afraid to ask to be lab partners with, even boyfriends at different stages. And I felt lonelier than ever, like an puppet that was taken out for shows and then thrown back into the box. I became convinced that my classmates loathed me and thought I was foolish. The truth, that most of them were indifferent to me generally since I kept to myself and didn’t see anything weirder in me than my knitting in class and occasionally rearranging Skittles in color order, wasn’t much more comforting. I wanted to make connections with other humans and I felt I couldn’t manage it because I wasn’t working hard enough, but I didn’t know how to work harder than I already was.

Eventually I broke down in a GPs office, scored a 30/36 on an anxiety and depression paper test, then went home with a prescription for citalopram and a suggestion of CBT. Medication was wonderful — the anxiety lifted, the depression lifted, the paranoia disappeared, I went to a couple of parties, and I started being able to cope again with my connection difficulties. I still struggled to make friends, but at least now I didn’t feel like I was automatically an awful person.

Still, the isolation of final year in vet school, an internship hundreds of miles from anyone I had previously called a friend, and losing my first “real” job just after my internship because I couldn’t read between the lines daily, was tough. A veterinarian needs to be able to read body language, word choice and unspoken cues like a master and in under 10 minutes. While I could tell when I said something wrong, I often couldn’t figure out what or why. Bosses who bent the rules for their clients and expected me to do the same gave me the stress headaches I had in college, and I still couldn’t connect with my coworkers. Having friends seemed impossible, or doomed to failure if I did manage to somehow confuse people into being friendly to me for a few days.

Years later, on social media, a friend posted a meme of common female autistic traits, and a light went on. Other people felt how I felt and got confused at the same things I did, and there was a Reason. They weren’t lazy, or “stupid,” or awful, or spoiled, or jerks, or bad people (all things I had been told I was at various points by various people, and sometimes all of them at once): they had autism. It wasn’t their fault. Maybe it wasn’t my fault either.

So I got tested. My EQ, or emotional quotient, was nearly normal. My AQ, or autism quotient, was nowhere near normal. The day I got the letter confirming that I had autism of the kind that is still sometimes named Asperger’s, I felt an enormous weight lift off my shoulders. I am autistic, and it is not my fault for not working hard enough, for not being lazy. I am not an awful person.

“When the sharpest words wanna cut me down
I’m gonna send a flood, gonna drown them out
This is brave, this is proof
This is who I’m meant to be, this is me.”

I still struggle on a daily basis. Work is hard, and the annual Christmas party leaves me socially exhausted for days. I am terrified I will accidentally somehow neglect the developmental care I should be taking of my now 5-month-old son because I might not realize something key about the socialization of infants. Life keeps moving on and making itself complicated in new ways. Being autistic is easier with the label, not easy. But there’s nothing wrong with that, and compared to before, having a diagnosis makes me feel much more invincible.

“Another round of bullets hits my skin
so fire away, cause today,
I won’t let the shame sink in.”

I am autistic, and I will figure it out, and I will cope, and I am OK. I am not normal, and I don’t need to try anymore to fit in as much as I used to — I understand now that I probably never will, at least not past about 80 percent. That label is liberating in so many ways, and now I can easily explain to others why I am different.

“And I’m marching on to the beat I drum
I’m not scared to be seen
I make no apologies, this is me.”

This is me.

Originally published: March 21, 2019
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