18 years worth of damage. That’s how long I’ve been in therapy and/or on psychiatric medication. I’ve only just, as of September this past year, found a therapist that I can begin to work with. One who seems not only competent, but somewhat helpful. So how long will it take her to undo the damage that past mental health care workers have inflicted? One year? Five? How long do I have to wait for recovery? With recovery meaning that I am able work part time or in a fulfilling volunteer position, with a satisfying social life. Is it worth hanging on for that possibility, knowing that it might never happen at all?
I am told that saying things like “I’ll never get better,” or “I’ll never feel content with my life” are self-defeating, that they are something my therapist calls “future-telling.” I cannot see into the future, so I cannot say with a certainty that I will always feel this gloomy, or so she says. What if, however, I can infer a pattern for my life based upon past evidence of its trajectory? According to this evidence, I might as well walk outside right now and into oncoming traffic.
It’s hard to watch all my friends and family moving on and having lives. Getting married, working, having children, etc. I feel stuck, and sometimes I feel as if I am moving backwards. I am 35. Single. Jobless. I may have friends and family, but I very rarely get to see them in person. My social life takes place almost entirely online. This doesn’t help me practice my people skills enough to get help with my ever present social anxiety. Which would help me find and keep a job.
If I hear my therapist tell me one more time that I can do anything, that I can have any job I want, that maybe I should go back to school (since that’s the last time I was even the slightest bit happy and engaged in life), I will scream! I’m $14,000 in debt from my first attempt at college. I can’t afford to do this again! I’m 35, but I feel 53. Or older.
I feel abandoned by society, as if it has no use for me anymore. As if to others, I am not worth anything at all. Not worth their time, their money, their kindness, or their respect. I see people talking about treating the disabled with dignity, and fundraising for various causes relating to Autism and mental illness, yet these same friends and family ignore me. Me. I have Autism, I have a mental illness; charity could start here! I am very poor at reading social cues, so just invite me out and pretend you are interested in spending time with me. I probably won’t know that you are lying, and that you can’t wait to get home!
Most of the time, I don’t think that I’m the one whose social skills need fixing. I know enough to know that friendships have a give and take, that it’s not all about one person. I know that conversation itself is an art form, one that some excel at more than others. So why is it that many of my conversations with others seem to involve listening to them talk, and not seeing them attempt to give back? I think that sometimes, people just want to talk at me, and not with me. Show an interest in me people; don’t just tell me your life story, your whole familial and medical background, without bothering to ask anything about me in return!
Living life with Aspergers feels for me like being stuck on an alien planet without a universal translator. Maybe you learn enough of the customs to get by, to feed, clothe and shelter yourself, but for me, that feels like all it is sometimes. Like I never really fit in, or belong anywhere. The older I get, the worse I get. When I get upset with friends, when they do something to hurt me, or I feel as if I’m being taken advantage of, I tend to let them go. I have done this so many times that I have nobody left that I spend time with on a regular basis other than my mother or father. Facebook is a poor substitute. Some Aspies might be fine with this, I am not. I need human contact, and mental stimulation. I crave it. I’m lonely as hell.
I moved around a lot as a child, from England to the U.S. and back three times before the age of 8. I think that’s why they didn’t catch my Asperger’s. I am naturally shy, and when your accent and sense of identity is changing so constantly, it’s natural for the teachers and other adults that you are around to think you are just a bit odd. I always had at least a few friends in school, so that helped cover it up. For some reason, I remember being obsessed with the idea of being popular, and always felt lonely since, well, I wasn’t. I think really, that I just didn’t want to be bullied anymore. I wanted to look like everyone else and sound like everyone else. I quickly dropped my British accent after living in Massachusetts, although it took about a year or so for me to really pass as American.
As for looks? I developed early, and my sensory problems went into overdrive along with my hormones. My naturally frizzy hair gave me constant problems, and my mom wasn’t that into hair or clothes, so I didn’t get any help there. I remember wearing the same two or three outfits all the time in the winter, as I was always being told to put on more layers, and I didn’t have that many options to combine together. I looked odd; I looked like I stood out. I wore my hair in a pony tail all the time, and the kids teased me for it. I wore the same two scrunchies all the time, which was my choice, because they were comfortable. I wasn’t comfortable with the feeling of my long hair being in my face, and I didn’t know what else to do. I hated wearing a bra, which I had to start doing from the age of 10, so that made things worse. I was still a kid but my body wasn’t acting like it. It was a very confusing and lonely time.
I am told that I have something called Asperger’s Syndrome. In other words, I don’t play well with others. I’m kind of like Sheldon Cooper on the television show “The Big Bang Theory,” except that I don’t have a genius level I.Q. I don’t get a lot of the social norms or rules of behavior that other people seem to have been born knowing. I understand sarcasm, but many people with Asperger’s don’t. We take people at face value. If you say that you think or feel a certain way, we will believe you. We are not rude, but we may be perceived that way, because many of us say what we feel without filtering it first.
I take medication to manage the depression and high levels of anxiety that my condition brings along with it. Although sometimes I feel as if the medication is so that the world can manage me. If it were up to me, I would never have been put on this poison to begin with. I experience a great deal of sluggishness of mind and body; side effects of many psychiatric medications. Yet these medications are addictive, very much so, and even recovered to the peak of mental health, you don’t just stop taking them cold turkey. I tried reducing and then eliminating my psych meds last spring and summer, with my doctor’s help, but couldn’t cope. I had been on the stuff for so long, from adolescence to adulthood that my brain didn’t know how to function without it. I remember being angry for the better part of last year, wanting to scream aloud at everyone around me. So I had to go back on it.
Getting up and starting the day is one of the most stressful things about my Asperger’s. If it were up to me, I would face no more obstacles in getting out of bed and dressed each day than any other man. And yet, I am a woman, with all its encumbrances and feminine expectations; bra, shaved legs and underarms, long hair and makeup. “Just don’t wear a bra” my old therapist told me when I complained that wearing a one felt as if I were being suffocated and choked. Really? When all I want is to blend in and feel as if I fit in. These garments feel as if I am being choked or strangled. Same with the long hair. I think I look better that way, but the feel of it loose around my face is irritating, as is the feel of a hair tie or headband. And yet I am not Transgender; I have no desire to live my life as a member of the opposite sex. I just detest the expectations put upon my gender. Many people with Asperger’s experience something similar. It’s called sensory overload. It’s different for everyone. Not everyone is bothered by the same sensations. For some, light and sound are magnified. For me, anything tactile is bothersome. Hence the struggles I experience with dressing and grooming. By the time I am dressed each and every day, I am often too exhausted to even think about leaving the house.
My apartment feels like a prison. I am one of the youngest women here, and one of the better looking. Yet I have to dress down just so I can walk to the store or to the library right up the road. The offers, the suggestive leers and glances I receive from the men in my building are too much to bear. I can barely step outside my door without wearing anything but long pants and a heavy long sleeved shirt. Or at least that is the way I feel. It’s the only armor I know of that helps me feel safe enough to even attempt to be physically comfortable stepping out into the world.