Learning to Live With Myself: Asperger Syndrome

One of the biggest challenges I've faced in my life is learning how to deal with what goes on inside my own head. One minute, I'll feel motivated to make something, paint something, do something productive, and the next moment I'll be face-down on my mattress, feeling like I can't move under the weight of my thoughts. I've been diagnosed, misdiagnosed, and tossed around by doctors and psychiatrists, trying to find a solution. Depression, Anxiety, Borderline Personality Disorder, Bipolar Disorder, etc. are all things I've heard multiple times over the years. Medications worked short-term, but I'm now suspicious that they only worked under a placebo effect, since I never saw any real tangible improvement in my behavior. Nobody really knew what to tell me in terms of why I felt so out-of-control until very recently.

I had a mental breakdown a few months ago. I had been laid off for the third time in a year, I was attempting to go back to school without a whole lot of success, and I was emotionally lost and broken. I felt like nobody really liked me, I was facing the fact that I may have been laid off because I can be difficult to work with, and I overall was the most depressed I've ever been. I usually listen to podcasts to distract me from my own problems, my favorites being storyteller's podcasts like The Moth, StoryCorps, Strangers, Risk!, and my favorite: Beautiful Anonymous. When I stopped being able to focus on podcasts to take my mind off things, I knew I was in serious trouble. I was falling apart. My life no longer had structure. Nothing made sense. I feared my dreams, so I didn't sleep well for weeks on end. I wasn't sure how I was going to pull myself out of this hole I was in, especially since I had no job and wasn't having any luck finding a new one at all.

My mom came up to help me do my dishes and clean my apartment one morning while I tried to tackle the homework I had been avoiding. After hours and hours of work, we finally both got my to-do list down to a manageable level. I still felt like I would be better off just disappearing, and I ended up telling my mother that. My poor mom, she just sat with me on the edge of my bed and listened to me basically melt into a puddle of childish tears. I felt like I had reverted back to being four years old. I could barely put words together to explain to her how I felt. I just felt... Lost.

"Why am I like this?" I gasped between sobs.

My mother took a breath and paused, looking rather perplexed. "Sarina, I think it's time that I tell you something I probably should have told you a long time ago."

I inhaled sharply and froze, unsure of what was coming next.

"Your dad and I weren't sure whether or not we should tell you this, but do you know what 'Asperger Syndrome' is?" She leaned a little further away from me, studying my shocked face.

"Yes...." I said slowly, "It's a higher functioning form of Autism, right?"

My mom nodded and sighed, "you exhibit quite a few symptoms, and I believe that may be why you feel the way you do."

My head was spinning, all of a sudden all my weird behaviors and obsessions made sense. I knew enough about the Autism spectrum to know that there was a good possibility that I fell under that category. I also knew that women and girls were more difficult to diagnose, since we have much higher social expectations from a very young age. Young girls tend to copy others' behavior, so it can be incredibly difficult to tell a high functioning Aspie from a neurotypical child with introverted tendencies.

Now, this conversation with my mother lasted a couple of hours, but conversations with her usually last at least that long and the details are slightly less important in this case. Later that evening, when I returned from my class, I sat down with my fiance and talked to him about the bomb that had just been dropped on me. I opened up my web browser and started searching for some sort of test to figure out definitively whether or not I was on the spectrum.

Yes, I realize that I need to be officially diagnosed by a professional. Professionals are expensive and I honestly have not had great experiences in the past with them. I've seen 4 different therapists over the course of my life and only one of them even had a clue that I might be an Aspie. The worst part is, she did not even tell me, she told my parents instead. That was over 5 years ago and my parents only recently informed me of this, because said therapist warned them that I may react poorly. I won't linger on this subject because it makes my blood boil, so let's move on, shall we?

I found a really awesome blog by a woman named Samantha Craft. She retired the blog in February of 2017, but continues her work as an author and Autism Spectrum advocate on her main website, Spectrum Suite LLC. In May of 2016, she posted an "unofficial guide" to symptoms in women with Autism/Aspergers. I used this guide, along with the official DSM-V Autism Spectrum Disorder Definition, to do a preliminary self-diagnosis.

I made an Excel spreadsheet with numbered cells correlating to each listed symptom and sat down with my fiance, Brandon. I put a value of 0 in the box if he and I felt the symptom did not apply, a 1 if only one of us felt that it applied, and a 2 if we both agreed that the symptom applied to me. I then found the percentage of applicable traits by totaling a "perfect" score and dividing my score by that number.

87%

That number felt so... right to me. As I was going through this list of symptoms, tests, and various articles about Autism Spectrum Disorders and Aspergers, I felt my sense of calm returning for the first time in months. I felt like I finally had a path to travel on and tools to help me adapt to the world around me. I also realized as soon as I came to this conclusion that my method of self-diagnosis was actually a very Aspie thing to do and I felt retrospectively silly about it, to be completely honest.

Once I was sure of my condition, I began slowly "coming out" to a few of my closest friends, and to my surprise, out of the 5 people I initially shared this information with, 3 of them are also on the spectrum. I had no idea, and it made me a little sad to realize that these people were like family to me and I didn't know about the one major thing that made them who they are. I began to realize that I may never be able to speak openly about this part of my life, since social perception of people on the spectrum seems to be either sympathetic or flat out negative. Cue internal mental rant about anti-vaxxers thinking that having a child with Autism or Aspergers is worse than said child dying from some disease that was previously eradicated by effective vaccines. Grumble grumble grumble.

As I've shared this information with more and more of my friends, I am finding that I often connect with others on the spectrum, even relative strangers who exist in the same internet spaces as me. I've learned a lot in this short expanse of time, both about myself and others. I have a lot more research to do, and I probably do need to find a therapist who can both diagnose me officially and give me the remaining tools that I need to live my life as "normally" as possible.

My experience is neither rare, nor particularly extraordinary in any way, but for the first time since I was very young, I no longer wonder "what's wrong with me." I still worry how people in the future will perceive me as a neurologically atypical person. My parents have discouraged me from disclosing this information publicly until I have an official diagnosis, which I understand to a certain extent. The main reason I am choosing to ignore my parents' well-meaning advice is this:

The stigma around being neurologically atypical needs to be torn down and burned to ashes. If you've met one person on the spectrum, you've met ONE person on the spectrum. We are not all the same. Yes, there is a name for why we tend to not conform to society's expectations of what is "normal," but this does not mean that we can be packed into a box and shoved into a dark closet along with mental and invisible illnesses.

I don't get sarcasm most of the time, I tend to obsess over the things I'm interested in, I have some sensory and spacial challenges, I suffer from bouts of depression/anxiety, I struggle to make friends at times, the friends I do have I cling to for dear life. I also tend to make my judgement about a person I've just met based on their personality and the way they treat me, rather than on appearances alone. I still read for fun and relish the idea of getting lost in a fantasy world. I enjoy spending time by myself and I don't find silences uncomfortable, sometimes creating them on purpose. I am a better listener than I am a talker. I study people's faces and words, decoding what it means to be human on every discernible level. I am a perfectionist and my work is like a part of me. I personify certain objects unnecessarily; all of my cars have names and personalities in my head. I thrive on organization and planning. All of these things are probably the result of my brain working differently than a neurotypical person, however, this does not make me, or anyone else on the spectrum, worth less.

I am a woman with Asperger Syndrome. I am human.