The Big Open-Ended Question: On Loving and Accepting My Asperger’s -The Toast

The words always stood out ominously: “Tell me about yourself.”

Any time I met potential new friends or went on a date or had a job interview, that’s when I’d get into trouble. Sooner or later, there would be the big open-ended question. Sooner or later I’d have to talk about myself.

I would try and start off by listing and explaining my interests, and then after a while I might say, “Well, I’m a little awkward.” If I were drunk, maybe I would be a little more daring and say, “I’m bad at socializing.” But even if that went over well—and I was constantly afraid of the day it didn’t, the inevitable day when what I hoped would come off as endearing would backfire—I might want to say more, but feel profoundly afraid of doing so.

I always felt the constant spectre of the unsaid, of wanting but not knowing how to disclose who I really am. I can’t quite pinpoint the exact moment when I started feeling uncomfortable with who I was; I guess it’s when I realized that simple friendship and even just talking to people was hard for me. I couldn’t tell you at what point I diverged from the rest of the people on my Facebook feed, when they all started getting photographed at pool parties and baby showers that I wasn’t invited to, while I posted selfies and funny subway ads. It is common knowledge that making friends can become harder as you get older and are forced to find your own group – when you’re not at school among your peers, all day, every day. I am aware that I’m not the only person who gets anxious and sad when thinking about her social life (or lack thereof). But for me, much of the anxiety and sadness stems from the feeling that all of this is beyond my control.

I have what used to be called Asperger’s syndrome, before it got folded into autism spectrum disorder. I was always that person who was a little offbeat, talked to herself, and couldn’t read social cues. Oddly enough, this didn’t cause much trouble when I was young. Making friends wasn’t hard – I had a best friend, as well as a general group of friends, and got invited to all the necessary sleepovers and birthday parties. If anyone thought I was weird, no one showed it, but then I probably wouldn’t have been able to notice even if they had.

In middle and high school, though, everything changed. Suddenly my differences became painfully obvious. I still cried in class and had difficulty controlling my emotions, not realizing that the older you got, the more unacceptable that was. Because I had trouble reading social cues, I didn’t clearly understand social boundaries. I became known for obsessively calling boys I liked, which got me in trouble with their parents and earned me a reputation as someone who was “creepy” and “intense.” As time went on and this caused me more pain and embarrassment, I became more and more ashamed and reluctant to tell people about my Asperger’s. My parents were clueless when it came to raising a child on the spectrum and had no interest in learning, so their way of dealing was basically to not discuss it at all and treat meetings with my case manager and school psychologist as major inconveniences.

When I actually did succeed in befriending someone who understood me, I would think, Maybe I am normal. Maybe I can do this. But it was always just a matter of time before I violated some unspoken rule or said something wrong, and then I would lose both that friend and that feeling of comfort and camaraderie and normalcy. I spent prom weekend by myself in a hotel room at the Jersey shore, watching movies on my computer and eating pizza. By the time I graduated from high school, I was deeply unhappy and suffering from crushing social anxiety, wishing I could become anything, anyone other than myself.

I hoped things would change in college, and they did, but not in the way I expected. I joined a few Asperger’s support groups, as well as the website Wrong Planet. At first I was happy to find a community of people much like me. But after a while, something began to bother me. At the time there were very few women on the site and in the groups, so I got more than a few romantic overtures from male members. I also noticed that a lot of the members seemed to be in STEM fields and very into traditionally “nerdy” things, and as an English major who was barely passing her statistics class — in part because she went to art museums and ska concerts too often — I couldn’t entirely relate. But what was really going on, what I couldn’t acknowledge until years later, was that I was embarrassed by my Asperger’s. Years of painful interactions and loneliness had made me vastly uncomfortable with that part of myself. When I joined the site and support groups and was confronted with people who were comfortable with their autism—some of whom were proud of who they were—I just couldn’t face it. I was so deep in pain and had been made to feel so ashamed that I would have given anything to make it all go away. Reading their posts and talking with other people on the spectrum brought so many feelings and thoughts I had tried to bury to the surface. I couldn’t deal with it at the time, and so I left.

For years after, I tried to hide who I was and had some success. On the rare occasions when I did disclose my diagnosis, the response would usually be something along the lines of, “Wow, I didn’t know you were autistic!” I always took that as a compliment. After I graduated from college, I got a job and earned a reputation as an excellent employee, who was praised by her superiors and co-workers for her industriousness and attention to detail. But it always ended there. When I actually had to have social interactions with these same co-workers and superiors, I was at a loss. The few times I did try, I said something that was somehow inappropriate. It felt like high school all over again. Even when I didn’t say anything, even when I just talked about work, I could tell that I still seemed a little odd to most people. A recruiter once told me that I had “an edge” about me, and didn’t really elaborate on what she meant by that. Co-workers told me that I was “too eager” or “forceful.”

Outside of work, it was even tougher to make connections. I joined clubs and groups and would try to talk to people, but as time went on I became increasingly nervous. What if I say the wrong thing? I’d think. I would always imagine that I was becoming close to some people, only to discover that the other group members somehow got each other’s phone numbers or received invitations to birthday parties and cookouts and weddings that I knew nothing about. Even when someone did say “We should hang out again sometime,” nothing would happen after I invited them to brunch or out for drinks. I learned that “we should hang out” was often just a polite thing that people said, but I never understood that, because it did mean something to me. I felt I had so much to give, so much to bring to a friendship, yet no one seemed to want it.

When I started to pursue romantic relationships in the years after college, I found those even more challenging than friendships. I joined OKCupid on the advice of many people, but rarely got responses to messages I sent, and those I did get were often unwanted and inappropriate. Whenever I got close to scheduling a date, it would be cancelled at the last minute with no explanation. Disillusioned and exhausted, I decided to try speed dating, attending an event for people who liked to read. One of the people I talked to was a writer. I had recently made the decision to start writing again, and we spent the rest of our five-minute conversation talking about what we were working on. I thought that we really hit it off, and so I put his name down on the list of people we liked that we had to submit at the end of the night. When I later found out that he didn’t select me as a match, I was genuinely shocked—I had smiled and laughed and tried to be the conversationalist I thought everyone wanted to talk to.

Everyone talks about your twenties as the time when you form all of these close friendships and have these awesome, life-changing experiences, and that wasn’t happening for me. Sometimes I still worry that I’m missing out on something important. But over time, things have become a little easier – I could not tell you exactly when or why. Maybe it’s because, after years of therapy, I finally realized that there’s no such thing as “normal,” and that everyone is a little awkward. Maybe it’s because I made some genuine friends who liked me even after I disclosed my diagnosis. Or maybe all those years of dining alone and solo movie dates and drinking at a bar by myself with a book made me realize some important things about who I am.

While I do have friends today, I don’t have many, in part because I need people to be completely honest with me about whether or not I’ve done or said something wrong, and that is difficult to find. I still have meltdowns, although not as bad as during my younger days, and while they’re still a little humiliating I know that I am generally coping much better. People have said that I should date someone on the spectrum, but I’m not sure if that’s something I can do right now—I’d feel more comfortable with someone who is a little more socially adept, someone who can help me navigate social situations, as well as someone who can keep me a little more grounded and out of my own head. While I’m less ashamed of my diagnosis than I used to be, I know that I’m still unsure of my place within the greater autistic community—in part because I sometimes feel guilt over how well I can “pass.” I do still feel lonely from time to time when I get on Facebook and see all the seemingly effortless interactions there. There are times when I’ll be in a store and pass by the shelf of bridal magazines, and I’ll get depressed, wondering if I’ll ever have a need for any of them.

But I have realized that my Asperger’s is responsible for more than loneliness or awkwardness, more than the challenges I’ve described. With it comes with my attention to detail, my persistence, my many interests, my introspectiveness. I don’t lack empathy, as is commonly thought of people on the spectrum — I have a lot of feelings, and while their intensity can feel bothersome at times, mostly I am thankful and even proud to feel things as vividly as I do. I care deeply for others. I know that I can be a real get-up-and-go person once I find something I’m interested in, and can do whatever it takes to get what I want.

I’m able to see and experience things through literature and music that other people don’t. Years of trying to decipher people and situations have given me a deep fascination with the unsaid — what’s between the lines, what’s hiding underneath, what’s going on in those rests and line breaks. Works of art have a profound effect on me—a few years back I saw a production of Einstein on the Beach, and I was so moved that I left the theater with tears streaming down my face. How that play made me feel is an experience I wouldn’t exchange for anything. I’m trying to embrace that side of me, the side that is original and creative and feels things deeply and doesn’t care what people think.

One of my most vivid memories is from a day in nursery school when I was supposed to color in a coloring book page depicting the landing at Plymouth Rock. I drew a rainbow instead, and felt confused when the teacher yelled at me. Now, as an adult, I try to recognize my creativity and offbeat spirit as strengths, not weaknesses, and integrate them into everything I do. It’s still a struggle at times, and it always will be. But over the years I’ve come to realize that without my Asperger’s, I’d be a completely different person. I might have more friends, feel more confident, be on a more stable career path, or possibly even be living with a partner. But then again, I might not. And when I wonder about this alternate-universe version of Magenta — the one without Asperger’s — I don’t know who she is. I don’t know what her strengths would be, what she would be into. Would she still love to read? Go to art galleries and let her passions consume her? What does she think about? Is she happy? When I think about these big open-ended questions, I’m not sure I like all the answers.

And that’s precisely what I try to keep at the front of my mind. Now, when I struggle with having Asperger’s, I try not to despair. I try to remember that I’m different, and that difference is also what makes me me. While I may not have it together all the time, I try hard, and I exist, and I care about people, and that’s what really matters. Now, when faced with that ominous request — “Tell me about yourself” – I try and find enough space to share all that I am.

[Header image via Flickr]