“I’m never alone. I’m alone all the time.” – lyrics from Bush’s 1995 single “Glycerine”
These two simple sentences encompass how I have felt my entire life. Surrounded by people – people who looked like me – while knowing that inside I was alone and completely different from everyone else. It wasn’t just something I *felt*. It was something I had been told time and time again by peers, teachers, friends, and family. I can’t count the times I heard the words Odd, Quirky, Weird, Strange, Geeky, and Nerdy. I’d be rich if I had a nickel for each time I heard the phrase “You’re a black and white thinker and the world is not black and white.” My inability to express how I felt in a way others could understand gave the impression I was Cold, Unemotional, and Incapable of Being Hurt. They thought my apparent lack of emotion meant I was “Strong” but inside, my inability to fit in made me an emotional train wreck. (What does being strong have to do with NOT displaying emotion, anyway?).
I originally chose ET as the cover photo for my blog because I have always related to aliens. ET, the aliens on the TV series “V”, the infallible Mr. Spock – any type of intelligent alien confused by the behavior of humans. Often in shows with aliens, the alien must disguise himself in order to infiltrate or fit in with humankind. I emulated their behavior. I already LOOKED like everyone else. I just had to learn how to *act* like everyone else. I felt like everyone had been given some kind of instruction manual on how to make friends and please people that I had not been given.
“Half of the time I don’t know what they’re talking about; their jokes seem to relate to a past that everyone but me has shared. I’m a foreigner in the world and I don’t understand the language.”~ Jean Webster
In time I became an actress of sorts. I created a social persona – a character I pretended to be at school and with friends. She was goofy and over-the-top and liked to make everyone laugh. People always seemed to like individuals who could make them laugh. As I have grown older, I have created several characters I play to function in the world: The Work Me, the Friend Me, and so on. Like the aliens I identified with, I grew up feeling I had to alter my behavior and disguise my true self to fit in. I felt alone and wondered if I would ever be able to show anyone the real me and have them love me.
Growing up, I never heard the word Asperger’s. The word autism brought to mind the non-verbal child who rocked and played with a spinning top for hours on end. There was no “high-functioning” in the autism world back then. Like so many other undiagnosed “Aspies”, I was highly intelligent. By the time I reached 4th grade, my small elementary school told my parents I was reading beyond the high school level and they had run out of textbooks for me. My teachers praised me. My peers belittled me. I was bullied in elementary school and junior high for being too smart. I was naive and easily tricked by false kindness. I was hurt often because I believed my differences were my fault. I wanted to believe that if I just tried harder, I could be like them.
Peer interactions quickly taught me it was better not to be too smart if I wanted to have friends. I learned how to dumb myself down. In my freshman year, I went to a new high school. Traumatized by years of bullying, I talked to no one. I observed. For a year, I spent my lunch hour keeping a journal on behaviors. I read every psychology book I could get my hands on. I studied how students talked to each other. I practiced and mimicked their behaviors in the mirror at home. A closed lip smile while tilting the head to the left with a little sigh meant “That is so sweet/I agree/or Awwwwe.” My preferred posture – arms crossed in front of my chest while avoiding eye contact was not appropriate. It was during this year that I created the goofy friend persona that helped me survive high school. She was emotionally exhausting to maintain. After school, I would turn off School Me. I had a large papasan chair in my bedroom. I would tilt it so it became a bowl and climb in and cover myself with a heavy comforter and sleep (like a big, aspie pot-pie). I can’t count the number of times I cried “What is WRONG with me? Why am I so different?”
Like others with Asperger’s I had a strong sense of justice. My moral compass was sound. I did not drink. I did not do drugs. I did not party. Of course these behaviors only further alienated me from my teenage peers. It wasn’t that I didn’t *want* too. I simply could not. Doing these things was 1) Wrong and 2)meant I might lose control. If I lost control, the real me might slip out and then everyone would laugh at me. I was the very definition of “tightly wound.” If school wasn’t exhausting enough, my life at home was a struggle. My father worked out of town and my mother suffered from a manic-depressive disorder with episodes of paranoia. That’s a long story for another time. The bottom line is: for me, there was no safe place. No place to exhale. “Suck it up cupcake” was my motto. There was no other option. I had to keep moving if I wanted to survive.
Every lesson I learned about social interactions, I learned the hard way. Until last year, I believed I was still alone in the universe. My hope that the mother ship would someday come for me was fading fast. I was 39 and at a breaking point. How much longer could I live in a world that would never accept me? How much longer did I want to struggle? How much longer could I be constantly misunderstood? I had started a new job and experienced what so many others with Asperger’s face: Employers are less interested in your skill level and MORE interested in your ability to socially interact with your peers.
Work Me is excellent with our patients, but I often have no interest/energy in the small talk necessary to maintain peer relationships at work. I simply don’t care about your new bag or your monogrammed hoodie. I’m not interested in the 134 pictures of your kid at Disney. (Maybe 10, but sheesh.) I have a very hard time pretending I do. Past experience has taught me that when I feign interest – even if I think I am doing a good job of faking it – the other person ALWAYS knows it. My director said that I wasn’t “aware how my interactions affected coworkers.” She couldn’t tell me who I might have offended. She couldn’t give me an example of something I said or did. Just ‘try harder’. Try harder? Without clear direction I felt lost. I over-analyzed every conversation. I was afraid to speak to coworkers for fear that I might not ‘realize’ how I presented myself. Then I was afraid if I DIDN’T speak to coworkers they would think I was rude. The thought of going to work made me nauseous. I needed this job. My family depends on my paycheck. I felt like I was in junior high all over again. I was at the very end of my rope and almost ready to let go when I learned I had Asperger’s.
For me, my Asperger’s diagnosis was a great relief. It was the answer to my “Why am I SO different?” question. I cried the first time I talked with a fellow Aspergian. I sobbed like a baby. It was the first time I found someone else like ME. I went through counseling and read everything I could read. I’m still reading. I started an online support group on Facebook and “met” others with Asperger’s. I call them my Aspie family and they are. They really are. Asperger’s is a spectrum disorder and my “family” is all over the spectrum but we share a commonality in the way our brains are wired and the way we perceive the world. We know all to well the pain of being left out and misunderstood. We all know how it feels to wonder “Am I really alone? Is there anyone else like me?”
Writing has been a form of therapy for me for as long as I can remember. Writing and music are my catharsis. They are often the only way I know how to purge my emotions. I have wanted to write for such a long time, but I worried that I would not have anything to say that had not already been said. A lifetime of being told I wasn’t good enough made me fear I would fail. I couldn’t take another failure.
Recently at work, I had a conversation with an esteemed physician and her colleague. We discussed parenting, children and somehow ended up on the topic of Asperger’s. I felt comfortable enough to tell her about my diagnosis. We had an amazing conversation about the needs of the Autistic community.
I shut off Work Me and turned on Real Me.
Flap My Hands Because I Am So Excited Me.
We chatted off and on for almost an hour. She told me I was “Amazing”. She called me an “excellent resource.” Her colleague said I should write a blog and then a book. He told me my insight was “invaluable.” The physician asked me to call her. She asked if I wanted to collaborate with her. She discussed starting a possible Asperger’s Support Group. She told me I really do need to start a blog. Me. Not Work Me. Not Pretend Me. Me. Autistic, Authentic Me.
I have become so accustomed to hearing what I am doing wrong – how I am less-than, that is has become a form of normal for me. Hearing the words amazing and invaluable took my breath away. Part of me was afraid that it was almost a dream. That conversation gave me the confidence to banish (or at least shelve) my fear of failure. I do have something to say. No one has told MY story. No one else can. I know there are others out there like me who have spent their lives looking for commonality. Connection. I want to reach out to them.
It is so easy for those of us struggling with Asperger’s to feel alienated – alone. This world reminds us every day of all the ways we are different. Our fear of being ostracized keeps us from reaching out to others. I know it has kept me quiet for so long, but not any more. I am tired of waiting to be picked. I am done shrinking. I am reaching out. Take my hand. I am going to end this blog and each blog thereafter with the four words I spent most of my life searching for:
You Are Not Alone.