I Was Diagnosed With Asperger’s at 33

Those with Asperger syndrome are said to sit on the “high-functioning” end of the autism spectrum. While all subtypes of autism are now technically folded into a single diagnosis (autism spectrum disorder, or ASD), the breadth of the spectrum means living with ASD looks different for everyone. 

Taylor was diagnosed with Asperger’s as an adult. The process of reflecting on her life and seeing herself through a new lens has been both scary and enlightening. When I got her on the phone to hear what that’s been like, she was chatty and friendly; I detected none of the bluntness she told me she has to keep in check.

Such are the subtleties of the Asperger’s experience — and it’s why I asked Taylor to share hers. Below is her as-told-to story. –Haley Nahman

Being diagnosed

I didn’t know that I had Asperger’s until a year ago. I was 33 when I was diagnosed. It was a long process. I think being diagnosed as an adult is a very strange experience, but it was also a massive relief. As a kid, I suffered from anxiety, but doctors diagnosed me with depression and stuffed me with drugs. Now when I look back, I think I was just struggling with Asperger’s and struggling to communicate with people.

Throughout my life, I tried to mask my social anxiety and social shortcomings by being outgoing and funny — but funny in a kind of offensive way. It sometimes made people laugh, but it also sometimes made people say that I was too much. I’ve always had a strange relationship with people and the way I communicate with them. I’m very blunt; I say whatever is on my mind. A lot of people don’t like that; they prefer the sugarcoated pleasantries. I remember during one of my first jobs in media, I was asked by my boss to add smiley faces and exclamation points to my emails because I sounded so mean in them.

I moved to Berlin in 2013. That was an interesting experience because not only was I dealing with new people, but also a new culture. German people are stereotypically very blunt, as well; they’re not big into small talk [like Americans]. In that way, it was nice for me because I felt a little more normal. But two years ago, I started getting really depressed. I was having a lot of trouble making new friends. Berlin is a very transient city, so I would meet new people and they’d move away. My friend group would fluctuate a lot, and I got to a point where I had only a handful of friends, if that.

I was super-lonely. I got really depressed thinking people didn’t invite me out because they didn’t like me, so I started looking at how I am with people and how I communicate with them. I started reading a bunch of things online, and, like any good digital native, I self-diagnosed myself on the internet. I took an online Asperger’s test and it indicated I was on the spectrum. But I thought, Okay, whatever, it’s just the internet.

Then my depression got worse, and my sister, who lives in New York, finally suggested I go talk to someone. I found a psychologist and met with her and said, “I took this Asperger’s test online and it’s probably stupid…” And she said, “Not at all — you actually have a lot of the symptoms. Let’s dive deeper into it and find out.”

The [official] test is on the computer, combined with talking to someone in person and problem-solving and stuff. It’s kind of similar to the Myers-Briggs test — that was actually a component to it, as well. Mine, INTJ, turned out to be very prone to Asperger’s. The therapist gave me a lot of literature, and we kind of went on this journey together of figuring out what it means for me as an adult. It’s been scary but also such a relief.

How it feels

It’s hard for me to explain what it feels like because I can’t speak to other people’s experiences. The spectrum is massive. Different people are plotted along it in different ways. I have a cousin who is low-functioning — he’ll never be able to live on his own — whereas I am high-functioning and you wouldn’t necessarily know I have Asperger’s if I didn’t tell you. Everyone has different quirks and different ticks.

I do think there are key commonalities, though. For one, we process information differently. For example, today was a really hard day for me because my boss sent me a two-sentence email. I had to read it 20 times, say it out loud and write it down to understand it. I was so overwhelmed I actually had to step outside for a little while. I couldn’t process this one sentence that said, “Add links to the document below and draft an email and send it.” I finally had to ask my coworker, “What does this mean?” It took me 20 minutes to figure out. The email was simple.

I think for a lot of neurotypical people, it’s much easier to pick up on tone of voice, body language or other nonverbal cues and know what they mean, whereas people with Asperger’s have trouble with that. Someone may say something to me that is bitingly sarcastic and I might leave with the impression that they’re very genuine. It’s hard. Sometimes my boyfriend will have to remind me when something’s a joke.

My brain just never feels fully comfortable. People think I’m being rude when I ask a question like, “Can you repeat yourself?” But it’s not that I’m not listening or meaning to be impolite — my brain just didn’t process what they said. It’s hard to describe how it feels exactly because other brains cannot grasp the way that my brain works. I tell people, “I don’t pick up on body language” or “I can’t look people in the eye” or “I don’t like being touched” because those things are relatable, but there are processing things that are harder to explain.

For example, your boss might send you an email saying, “Hey, I need this article finished by the end of the day,” and you would think, Okay, cool. I know exactly what she’s talking about. Whereas for me, my first thought is, Is this person angry at me? Followed by What article is she talking about? and What does she mean by finished? What if she’s not happy with it? Should I write two different versions just in case? What if they’re not the right two versions?

There’s a lot of overthinking, there’s a lot of overcomplicating. Nothing ever feels simple. I can’t trust my thoughts. I don’t think people quite understand how easy it is for neurotypical people to process information. It can be really crippling for people with Asperger’s.

I have to remind myself to smile. Even with my boyfriend sometimes, he’ll get really flustered. Sometimes I’ll think I’m being really cheeky and funny and playful, and he’ll get upset because it’s just not translating. And I’ll have to say, “I’m trying to not be too blunt! I’m trying to be subtle.” Reading people’s social cues is a tough one.

Another thing with people on the spectrum is sensory overload. Often you hear about people on the spectrum who can’t be around too many lights and sounds — mine is smell. It’s really weird. I like to know ahead of time if I’m going to be somewhere where there might be overpowering smells because they might rile me up and make me really uncomfortable.

Living with it

My entire life, I never felt like a normal person. In high school, I wasn’t unpopular — I had a lot of different social groups I hung out with — but everyone I was friends with always told me, “You’re really weird, you’re really loud, you’re really this,” etc. So I never felt that anyone really liked me. My impression was more that they just put up with me. In hindsight, I know people did like me because I have friends from childhood I’m still close with, but that’s how I felt.

My best friends now know that I have Asperger’s and can pick up on when I’m struggling. It’s helpful to have people who understand my triggers so they can give me space and give me what I need. My friends will sometimes say, “Do you just need to go outside for a minute?” They know to be supportive.

Now that I know I have trouble processing, I have even more trouble with people who are not to the point and tell me [excess] information. I cut people off because I’m either taking too long to process what they said or I’ve already processed it and I’ve gotten the most information I could possibly need out of that sentence and I’m done. I have to just shut it down sometimes.

I live in England currently, and the cultural stereotype here is to be nice and polite even if you’re pissed off, so that’s something [else] I struggle with. I try to stop before I say things and make myself say them in a nice way, which feels very unnatural.

For a while after I found out, I was worried about telling people because I didn’t know that much about it. If I said I had [Asperger’s], people immediately asked what it was or responded that they’d seen a special on BBC or something. And I’d think, You have no idea. I even made my boyfriend read so much stuff, and he’s still having a hard time understanding it. My parents would say, “You don’t have Asperger’s” because they didn’t see it. It’s taken them a while to understand it.

I think now, though, I just address it head-on. If I think someone is confused or I get the sense that they think I’m being weird, I just tell them. Sometimes I also say it up front so people know. Where I work now, I made the decision to tell them from the very beginning of the interview process. It’s funny because everyone there said, “I’m fairly certain this is the perfect place for you because all the processes that we have in the office are fairly Asperger’s-friendly.” And that just means no bullshit. They don’t want fluff. Just straightforward stuff. We’re not allowed to use Powerpoint — we just use Word documents, and that’s ideal for me because I’m able to just get things out and not have to worry about pleasantries. They like when people push back and say what they mean, too. It’s been a really good environment.

There is no treatment, just awareness. I’m still navigating it all. A lot of it is reading literature and reading about other people’s experiences as well as learning from your own experiences. You can’t be embarrassed about it. All you can do is learn more and grow with it. The diagnosis has changed the way I think about myself. I think it’s empowered me. It’s made me like myself more because when you’re constantly told by people that you’re a bitch or too blunt or too whatever, it doesn’t make you feel good. My whole life, I’ve struggled with how I’ve interacted with people, and now I finally have an answer. I’m not ashamed of it.

Collages by Emily Zirimis.

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