On the Outside of the Outside, Looking in

This morning I experienced something that hasn’t really happened since I was in my teens. I thought I was awake and I tried to move my arms but I was still asleep. I felt like I had no strength in any of my limbs which is a bit disconcerting if you’ve never had sleep paralysis before. I panicked for a few seconds but eventually realized what was happening and i worked my way out f it by thinking about moving one limb at a time. I realized I was dreaming when I was finally able to sit up and open my eyes. What I hadn’t realized until afterwards was that I had been watching myself from the outside of the whole experience while I tried to wake my body up.

It’s always a bit uncomfortable being on the outside looking in.

I don’t know what it is about today but my mood has been strange. As thoughts have unraveled I’ve felt like I’ve begun to disappear. I was thinking about yesterday. I went to my parents’ house, they grilled burgers, and then they started lighting fireworks off to celebrate the 4th. I found, in my first Independence Day not overmedicated on psych drugs, that my oversensitivity to sound does extend to things like fireworks. One of the kids lit off a small pack of firecrackers and I could feel myself tense at every tiny explosion. I knew this would be a possibility before I decided to go and I pre-warned everybody that I would probably leave before the celebratory explosions began. It didn’t really bother me leaving before the sun had gone down to retreat to my apartment for something a little more quiet.

I realize, sometimes, living on your own can be hazardous in a way. You’re left with nothing but your own thoughts, calculations, and self-talk. It was in one of these moments when I was trying to go back to sleep that I really started thinking about just how outside of things I have become in the last 18 months and realizing just how much more insular my thought processes are now because of it.

Let’s start off with one fact: I’ve never felt like I’ve belonged anywhere.

With that always in the background I find myself very attached to people and I don’t really think about the social dynamics. Today, I took a different approach to the thought of friendships and I asked myself this question: “If I’m putting in all the effort and reciprocation is inconsistent to non-existent, what is the benefit of investing my time?” This hit me in the face and hard because I realized that there were certain relationships where I have (and sometimes still do) where, if I don’t make the effort to contact someone, I wouldn’t ever hear from them. Yet, I get called a friend which is weird to me because I’ve done the exact same thing to others because of various reasons, usually life, nothing malicious, and they just never want to take the time to talk to them again. If there was no reciprocity then what was the point?

Maybe I’m coming to this thought late in the game. I don’t know what to do with this information, these thoughts, but I don’t know if people realize they do this or if it’s some other factor. I have bailed on events I’ve been invited to for social reasons but I think I’ve been pretty clear with almost everyone I spend time with the social difficulties and the steep learning curve regarding my sense of self just in the last year as my senses reassert themelves.

In my reading, I understand better my difficulty in feeling like I belong. We do not perceive the social dynamic, especially in groups, like a neurotypical. I think i can best describe it this way:

In social interactions, a one-on-one is the most ideal for me. I am 100% there trying to use the skills I have to understand our interaction. The more people added to the mix the more I feel like I’m fading out of the picture. For a Neuro-typical this is easy as they allocate attention to whatever they feel they need to attend to in the moment. For me, I’m still just 100% there and my attention gets spread over the entire situation. This is not too difficult but, as the number of people grows, the harder and harder it is to decide where to allocate attention because it all comes in as a flood; there is no executive function directing incoming data to my brain. Upon reflection  it feels a lot like I’m disappearing; my social capabilities decline and my anxiety goes up. I withdraw.

Most people I know don’t understand this or don’t try to understand this. I had to fight myself constantly before I went to work because I didn’t know what to expect. There’s another stitch in the side: my anxiety wants to know everything about an event before I go. It can sometimes take a fair amount of self-talk to get myself to go places sometimes. This has, admittedly, led to a lot less social interaction on my part. I get invited to friends’ shows and I have to decline because the idea of interacting with that many people puts me on high alert even thinking about it. So, I’ve “flaked” on a few things I said I would go to. Some people understand, some don’t.

What you don’t realize is that I already feel like I’m on the outside looking in. Like there’s this great invisible barrier between me and the rest of the world because there’s just some stimuli I cannot perceive. The unknown can cause anxiety, anxiety drives a need to remain asocial. Then i stop getting invited to things because I don’t show up very often. There are people who I don’t hear from unless I make an effort, sometimes multiple efforts to get in touch and make plans. In retrospect, I’ve realized how this really makes me feeel and I don’t really like it. I don’t want to anything because I don’t want to come off like I’ve got the wrong idea and then everything just gets worse because I’ve upset someone. It feels kind of like a no-win situation and I don’t know what to do. I’m still learning. 

But when you’re in situations with people you’ve known for a long time you know they expect you. They’ve grown comfortable and conditioned to the you they’ve known all this time. The idea that you could, all of a sudden, have this realization, doubt, epiphany, whatever, about your relationship feels like it would introduce a seed of mistrust that I wouldn’t pick up on or they wouldn’t tell me about.

The story of my life: I solve one puzzle and it just creates another. I don’t know what to do with this.

Now Playing:


Artist: Poison the Well
Song: “Botchla”
Album: Tear From the Red

But I adore her
This will never happen
But I adore HER
That will NEVER happen.
Over my DEAD body.

Of course I think ABOUT it
Burn my path if it does
Shape my body as I FEEL
Torn, BROKEN

And if it happens
I’ll BURN and crawl deeper in my hole
Darkness ALWAYS says hello
And your BURNING BODY will light my way
Burning body LIGHT MY WAY

Welcome in

 

One of my biggest obsessions: pro wrestling. Pictured above: Team PAWG, LuFisto & Jordynne Grace

Someone once said, though I couldn’t readily find the source, that a child with autism is not ignoring you but waiting for you to enter their world. Even though I don’t ignore people in social situations, I do tend to stay away from social interactions where the topic is either uninteresting or too surface-level for me to want to engage in. This is contrasted with the times when I talk too much about topics I care about and want to try to interest other people in it so I’m not alone in my, admittedly, niche interests. I think Buddy Wakefield said it best:

I talk too much
If you see me being quiet,
Don’t ask me what’s wrong
I’m just practicing

This is me most of the time. People ask me what I’m interested in and I end up overwhelming them with the overwhelming amount of emotion and cognitive input I get when I experience something like a 5-star wrestling match or listen to a really good song that touches me down to the guts. I don’t share out of selfishness or to dominate a conversation but in the hopes that someone else will be able to experience the elation I feel when I get involved with my favorite things. There’s an excitement there for me and, as a lot of people know, I’m not a very excitable person. I hate surprises, I don’t really like going out, and it can take me a really long time to process emotional content.
This happens outside the ASD community. Everyone gets excited about something or has a passion for something that maybe not everyone shares. Just yesterday I was throwing some things in a recycle bin at my apartment complex and, out of nowhere, this perky red-head gets all excited and tells me about the outdoor patio she discovered on the premises after living here for a year. Being very poor at people being excited about much of anything, I just sort of nodded and stammered my way through a response. I then retreated to my hobbit hole. Upon reflection, I wish I would have been more responsive. After a long day at work, I just didn’t have it in me, I suppose.

It’s something to remember, though. It really is. I don’t try to dominate conversation with my interests but it’s one of the only ways I’m really good at welcoming people into my weird little world. It’s one of the few ways I can show people how I’m really feeling when words get to be too little; music does it so much better. I think part of being Autistic is sometimes not having the words to describe what you’re feeling when you’re feeling every facet of something at once. Sometimes, you share what you love in hopes of gaining an ally and someont to talk to. It’s not just Aspies. NT’s do it too. However, I can say from my experience that no one exhibits a passion for things so strange and off the wall than I do among what few friends I have.

They all think I’m weird. At least they are the people who are wiling to step inside and accept my invitations to this little world.

Now Playing
Artist: Paul Kelly & the Messengers
Song Title: “Dumb Things”
Album: Same Old Walk

Dear, my friends… [An Open Letter]

Dear friends, acquaintances, readers, passers-by, and whomever else it may concern,

It has been over a year since I travelled to the psychologist’s office to receive the results of a battery of tests I had to endure to gain some insight on myself. When all was said and done, I was given a total of two major diagnoses based on DSM-V criteria:

  1. Major Depressive Disorder, Mild recurrent with anxious distress features
  2. Autism Spectrum Disorder

Along with diagnosis number two, the more important of to this letter, came the following information:

  • Social communication requiring support
  • Restricted, repetitive behaviors requiring support
  • Without accompanying intellectual delays
  • Without accompanying language impairment

I think everyone on some level has some idea of what Asperger’s syndrome is, but I want to be clear because everyone, literally everyone, with Asperger’s (now part of the Autism Spectrum as of 2013) is different with a few diagnostic criteria in common.

  1. Persistent deficits in social communication and social interaction across multiple contexts, as manifested by 1) deficits in social-emotional reciprocity, from abnormal social approach and failure of normal back-and-forth-conversations to reduced sharing of interests, emotions, or affect 2)Deficits in nonverbal communicative behavior used for social interaction ranging from poorly integrated verbal and nonverbal communication to abnormalities in eye contact and body language or deficits in understanding and use of gestures, to total lack of facial expressions and nonverbal communications. Finally, 3)Deficits in developing, maintaining, and understanding relationships, ranging, for example, from difficulties adjusting behavior to suit various social contexts, to difficulties in sharing in imaginitive play or in making friends, to absence of interest in peers.
  2. Restricted, repetitive patterns fo behaviour, interests, or activities, as manifested by at least two of the following: 1) Stereotyped or repetitive motor movements, use of objects, or speech, 2) Insistence on sameness, inflexible adherence to routines, or ritualized patterns of verbal or nonverbal behaviour, 3) Highly restricted, fixated interests that’a are abnormal in intensity or focus 4) Hyper- or hyporeactivity to sensory input or unusual interests in sensory aspects of the environment. (Atwood, 2008, p. 11)

That’s the clinical language surrounding it. If you made it this far, perhaps you’ll be willing to go a little further with me…

Most of what is listed above is true for me. For 30 years I didn’t know any bit of the way I acted was atypical aside from the fact that it made me an outcast in junior high and high school which made me very cynical after I graduated. Throughout that period of time I was also battling major depression on a fairly regular basis with little or no relief from medication, though I was tried on plenty of them.

A trip to the psychiatrist’s office in 2006 led to a diagnosis of some sort of mood disorder at first but then was changed to Bipolar II disorder. This led to more medication. Some of which I am still on, though in lowered dosages. The ensuing ten or so years have been hell, dealing with the side effects, the mood issues, the anxiety, and the depression on top of the social stressors I encountered along the way. These included losing two friends unexpectedly, almost losing a third to suicide, and a failed reconciliation with my biological father. Along with that cokmes a fear of abandonment because of the aforementioned bio-dad, which is the reason I have not pursued a relationship in the last 5 years or so. Feeble attempts have led to my being ghosted on more than one occasion. It just seemed the whole time, even before I was re-diagnosed, that I was not a good fit with most people.

Admittedly, there was a large amount of clarity that came when my diagnosis was updated to Autism Spectrum Disorder (colloquially: Asperger’s). The way I was growing up, the way I am now all make a lot more sense. To this day I still have issues communicating effectively either because I can’t read the tone of voice being used or because I take questions that have an expected response, like being asked my opinion on a new band someone really likes and wants me to like as well, and I don’t give the expected response by being super excited like they are even if they are visibly excited right in front of me.

If you know me at all, you know I love professional wrestling. I can already hear your collective groans as you read this. However, my obsession fits in well with the, “Highly restricted, fixated interests that’a are abnormal in intensity or focus”. I don’t watch the big names all that much anymore, but I have found a wealth of independent wrestling on the internet. I know the names of moves, I know the history behind some of them, as well as wrestling history in general.  I can tell you who trained who. I can identify the different styles used, and I even named my solo music project after an abnormally named pinning combination, The Magistral Cradle.

So, now, at the age of 31, I am living alone and going to school to get a BS in Psychology in hopes of getting into an MA program in Applied Behavioral Analysis, focusing on working with children on varying parts of the Autism Spectrum. I’m at the perfect school for it and I have the mind and compassion for it, I think. When I’m not doing school I’m on my feet for 4-8 hours a day as a Pharmacy Technician which, having Asperger’s, is surprisingly smooth sailing because a lot of it is just repetitive actions, phrases, and tasks. Now if only I could find a job with more hours and pays better. But that’s not really why I’m writing this.

Aspy’s, as we are lovingly called, are a lonely bunch for the most part. Every day is like a dress rehearsal, accompanied by generalized anxiety as well as anxiety when an activity or task is disrupted. Even when I’m doing something controlled and repetitive, I have to contend with the idea that, at a moment’s notice, my task will change based on the customer volume. I have medication to control it and it works well, but there’s still that conditioned response of hesitation and reticence that has to be overcome 

I am lonely sometimes. I live in a small studio apartment that supplies all that I need for living situations and usually I am content with reading, writing, composing music, or just watching a movie by myself. People don’t enter the equation much when it comes to my thought process. My therapist urges me to seek more social interaction, which is probably the greatest difficulty I have right now. Yes, I have people I call friends but, as an Aspy, there is an inherent difficulty in my knowledge of how to maintain those friendships. Just as I am rigid with certain routines, I can be rigid with my definition of friendship and it’s hard for me to wrap my head around anyone else with a different understanding.

Not to mention, the perception of social cues and voice inflections is almost lost on me. I have to intellectualize both my emotions and yours when we talk which is why I’m not always quick to respond or to come up with answers to thought provoking or introspective questions.

What I’m saying, I guess, is I really do miss people whom I consider friends but never see. I don’t know if I come off with this persona that I don’t like being around people all that much and so it’s considered doing me a favor by not including me in social activities or get-togethers or if those people just aren’t as good friends as I thought. That last statement is not an indictment but an admission of agnosia. I legitimately do not know and, even moreso, cannot discern the answer. I just know some days I just lay in my bed with my eyes closed and sink into a world of my own creation, creating scenarios and having conversations with people, none of which is real. I don’t want to do anything, so I just let my mind wander.

I want to be part of your life. I think I have a big heart and a lot to offer even if my actions betray that sentient. So, my goal in writing this is to inspire you to try to understand what it is I deal with on a daily basis and the things I’m still trying to learn about myself. I still have not learned to adapt. I’m still discovering sensory hyperactivity responses, like chaotic noise, or abnormally bright light. I know not everyone understands that. I know not everyone understands why or has the patience to understand me when I say things bluntly or matter-of-fact without regard to the other person’s feelings. These things might offend you or make you mad. Please know it’s never my intent.

What I’m getting at is, if we’re friends, I’m still here. I’m still on this new journey and I wish you’d come along with me, maybe help me figure out what it means to be an Aspy in a sea of Neuro-typicals. Let’s have some fun. Just, please, don’t try to change me or fix me. This is who I am. This is who I was created to be. Just love me for that and things will work themselves out, I’m sure.

Until then, a certain song comes to mind whenever I feel out of place or like I’m on the outside looking in:

Not inferior, just different,

J

The Dialogue

“You wonder if she has a conscience at all?” This ghost of a girl took her normal post next to him on the bench, smoothing out her skirt.

“It’s one of the biggest questions on my mind and it’s been driving me crazy. This is far from the first time something like this has happened to me but this one just feels so much worse than the others.” His gaze dropped to his shoes and he took a deep breath that gave him away as someone who bore the weight of his sorrows on his shoulders.

“Have you talked to her since…?” She trailed off as if mentioning the event itself might drop him like a right hook to his glass jaw.

“No! No… absolutely not. Such is my dilemma, I guess. She told me she wanted to be friends-”

She cut him off, “She actually told you that?”

“Yes. The real issue for me is that I feel like I was the one who got shafted in this whole ordeal. So, if I’m the first to make contact and tell her I wouldn’t mind being friends I feel like I’d be legitimizing what she did and give the false impression that I don’t care at all that she broke my trust. I don’t trust many people anymore, I just don’t. And when that trust is broken coming back from that should not be my responsibility, should it? I mean, if she actually has a conscience then shouldn’t it strike her in such a way that, while she may be content with where she’s at, she should be sorry for stepping over me to get there? I can’t even begin to comprehend the whole thing but if I’m as important to her as she claimed, enough to stay in contact after she kicked my heart in the ass, then shouldn’t she be the one coming to me in some form of contrition? Aren’t I owed at least that much?” He stood up, took a few steps and stopped to let the question float out on the summer air.

He glanced back. She was sitting forward with her hands on the edge of the bench, clasping it while staring at her crossed legs punctuated with sandals on her feet. She looked like she was absorbing the words he had just sprayed into the air. She was not used to him aerosolizing such invective but was willing to absorb it because that’s most of the reason she was there as far as time as time had allowed her to reveal. To him she was still a specter, an unknown. He didn’t know her and she had not introduced herself. That was important.

“This is the awkward part of these situations. You have to remember the one who is allowed to control the conversation is the one with all the power. So, yes, you would be yielding a lot of healing power and catharsis if you were to engage her in conversation to let her know that she’s important to you as far as friendships are concerned. I think you’d also be opening yourself to a lot of ache as you watch her run around with your, uh… replacement.” She looked at him to check for any emotional response. He was solid, statuesque, and staring off into the landscape of the park into the city street in the distance.

“Yeah. I can’t deal with that right now,” he said. His voice was flat.

“So, maybe you forget about her as best you can and work on you. Don’t hope for any great miracle, just know that if she meant what she said that she’ll make contact. If she doesn’t then it’s her loss. It was her loss in the first place, in my opinion.” She shrugged her shoulders.

He couldn’t see it because he wasn’t looking at her. His head dropped and he put his hands in his pockets. He took another deep breath and exhaled as much negativity as he could. He still had enough stored to last him for quite a while.

“Yeah. Yeah, maybe you’re right.” No affect. As flat as the pavement he stood on.

He started walking back to his apartment, not looking at her as he walked past where she sat. She watched him from the veil of shadows she sat within and didn’t say anything. Sometimes, there are just no more words.