Wednesday, June 1, 2016

Inside Out Reflections

*Disclaimer A*

"I really need to stop isolating myself and find some healthy social time. Yeah, there's a challenge to that when you're a mom but still, other moms' do it, so it can't be an excuse. It's about my own confidence and I'll put it out there; I'm tired of that holding me back!!"

Wow. In hindsight, this above post I made back in 2011, the year I started the A Girl Outside the Box blog, amazes me. I was quite shockingly out of touch with the real reasons as to why I couldn't get "out there" and "stop isolating myself." Sadly, this was due to having to live up to certain standards unnatural to me (in spite of enjoying it in small doses), coping by disassociation, and being born feeling generally weaker and unwell (thus having no baseline of "well" to compare it to.)

The real reasons were (and still are) that I was born autistic and with Ehlers-danlos syndrome, and I was falling ill with complex chronic health complications due to the latter. The energy I required to socially adapt and perform "out there", which, although I had become good at, was a lot more because I'm autistic, was diminishing. This was the main thing which brought me to the autism realization and diagnosis. I just couldn't do it like I used to (socially perform.) 

The worst part about this was when it related to dealing with doctors and trying to get medical help. I was still able to be hyperlexic oftentimes, but my expressive language execution and cognitive ability to functionally communicate (ie. not repeat myself too much, not perseverate, word things in an order/context that can be commonly understood) had worsened. It had gone from charmingly quirky to "bad TV actor" which "they" then perceived as sinister and deceptive. Sometimes, when I was more unwell and stressed, it even looked like a mental illness. 

So then, they perceived me as both positively mentally ill and personality disordered - in fact the key component here is mis-percieving my attempts to communicate as manipulative and unstable. There are many good reasons why people like me are misperceived that way, which I've written about before. But anyways, overall, I was often perceived as a threat, and then I was seen through a "less than a person, crazy b*tch" lense. So much of what I tried to express and say would fall on biased eyes and ears. At first and most especially, this came from non-autistic people (however, read ahead.)

Adding a most putrid cherry on top, I picked up on their negative, cynical, and narrow minded, mental-filter-rooted perceptions, because I am hyper intuitive. I can't read faces very well, but to compensate I have some strong ESP. In addition, people would sometimes tell me outright, or strongly allude to, what their perceptions were. Sometimes it was because I'd insist on knowing. This, sadly, often confirmed what I was already feeling and sensing. 

Hearing or picking up on the things I did hurt me, demeaned me and ultimately had somewhat of a gaslighting affect on me. How could I learn to like myself, even though I know knew I'm autistic, when I'm feeling such disdain from these people. Such refusal to accept me. They just wouldn't accept me for me! I was confused. My brain was saying "I want to be accepted as me, I want to believe I deserve that, I want to like myself, even love myself - as the real me, paint stripped and all, being accepted. But this is being disliked. Why am I un-likable, un-lovable - maybe there is a real reason. Is there?? Am I a bad person. Am I bad? Am I?" 

In spite of trying to present as strong, and proud of being autistic on the internet - even cocky thanks to false pride - (within the autistic communities especially) there was a deep pain that gnawed inside of me. I was somewhat genuinely proud in ways, and wanting to celebrate my divergence, but I was also confused, torn and still hollow deeper inside. This quietly festered like a chronic infection, weighing me down, holding me back, and in the way classic gas lighting does; it set me up to eventually manifest what would only confirm their negative perceptions. My reactions to the ignorance, inacceptance, frank abuse and further gaslighting raged like fire in a vicious cycle. It could never be fully put out because, well, it kept being (no pun intended) "gaslit." 

The negative perceptions were especially confirmed by my angry "us and them" attitude bathed in the idea of "Autistics vs. Neurotypicals." I truly believed, at least in the beginning, that this notion gave me power and strength. It made me feel better, at least on the surface. I thought it was a shield, but instead it was a sword. It was a sword that would only provoke jabs from other swords which would then have me be a walking wounded solider. 

Most sobering of all, those jabs began to come from others in the autistic community. That's right, the community I had grown to be so powerfully proud to be a part of, to rejoice-fully rant and rave in, began spraying me back with my own stubborn, secretly self hating, anti-neurotypical/anti-"them", angry, impatient, intolerant, dissatisfied, toxic, internalized ableist, depressed, anxious, even at times paranoid "pepper spray." Why? Well it was theirs too. Many of us beheld this bitter spray, and we began spraying each other with it. It was a rude, hurtful and heartbreaking awakening. 

At first, I reacted with the same kind of thinking that had created the "spray." It took me a massive health crisis involving getting sick at a predominantly neuro-elite thinking based event, and the entire drawn out aftermath of that, for me to wake up and smell the stench of that spray. I then put my bottle of it down, and away, and watched without it in hand, as I saw the spraying of each other within the community unfold. I then began really isolating myself from the community, I was hurt, wary and untrusting. I imagined that if I’d post any of my work in an autistic group, some anti-fans of mine were sure to see it and start a toxic, hateful and hurtful comment thread about me. Thought now I need to let this go, and I've worked on that a lot.

The worst effect of my diminished ability to "pass for NT" was being met with inacceptance at a time where I was falling physically ill, and in this desperate to put out my fire of inner demons; to emotionally heal so that it wouldn't take a toll on my increasingly sensitive body. Instead, I was met with what had me feeling like I could only become somewhat of a monster, to defend myself against the monster. This was the last thing I needed.

In this, I remained on this line where they (non autistics) didn't know what to make of me - so they placed me in dark, cynical categories. Obtaining an autism diagnosis didn't completely fix things as I had hoped it would, and sometimes even hurt me further, because of that awful skepticism. 

Again, it was due to ignorance over how a bright and verbal female autistic may socially, expressively and linguistically present… and as I said, even people in the autistic community began judging each other in that way. They were (and still are) engaging in wretched contests over "whose really autistic, and whose just an asshole." I realize now that we were all being affected and turning on each other, just like a bunch of active alcoholics - but nevertheless and from all angles, those kinds of reactive resentments, albeit justified, are horribly toxic. It was all a horrible experience. That’s why I had to walk away and put up my boundary for good, like I said in the autistic community related disclaimer.

Sadly, only through further battles, wounds and scar tissue did I finally arrive at a place where who I really am, and who I am not, has been better established. I mean within myself, first, because it's the only way for a concept like that to genuinely exude outwards. 

Regardless of it all, proving I am autistic through a neuro psych review which administered testing, viewed my childhood footage, and interviewed my family, was imperative. Though it was almost, and in ways positively too late in terms of preventing major damage to my health, it was still necessary for me to go through with it and come into it. After that, the job was trying to get people to accept it, and realize this is why I am the way I am, in spite of it not being a "stereotypical" presentation. In addition to this I had to convince them that I was also falling ill, and that successfully achieving the aspergers diagnosis did not mean that I had a "pattern" problem with "wanting to have illnesses." It was all connected. It is still all connected.

I think a reason why many autistic people suffer such grave mental health and adjustment related co-morbids is because autistic people (myself included) have this deeply embedded need to be true to themselves. So do many people, but in autistic people it’s particularly strong. But, this need is most often perpetually and tragically impeded on in todays' world. 

When it comes to my own need to pursue being true to myself, I was a daredevil. I would not give up, crawl into a cave, and submiss to society’s refusal to take me as I am. In the face of being character distorted in all kinds of ways, being called narcissistic, seen as an impertinent criminal type, assumed to be somehow conning because “she can’t be real” (because, ironically, I’m so damn real people didn’t want to believe it) .. it was all simply because I have this undying need to be true to myself. I defiantly gripped and waved the red scarf like a crazed Matadora on a mission to be allowed to be me. Even when I wasn’t sure if I liked myself at all  (and don’t ask me how that works) even when I knew it was the far riskier road to take and I was already weary and frail…I still did it. I just couldn’t imagine living life unable to be true to myself. 

Now, however, I pay with significant physical limits, because in the battle my illness progressed a lot. Today I am me for sure, but I’m very sick - and I’m still not sure what the meaning it all will end up being, but regardless I have worked hard to establish myself in the face of many harsh and injurious interruptions. Only now is it starting to pay off a bit, and I’m not yet sure if it’ll be on time enough for me to somehow recover at least partly, and live in the way that I’ve always dreamed of living. I don’t know which “Arc" will be my ultimate fate - Joan of Arc, or Noah’s Arc...

Only now do I realize that I must not work too hard for such things - and where it is that I need to draw the line, and let go of trying to change people who refuse to see it as it is. Some people will insist on believing their erroneous perceptions. I need to let go of those people, they are sick in their own ways, and that cannot be my problem. I cannot let their sickness make me sick. I’m already sick enough, and I know who I am now. I know what I stand for, what my challenges are, I know what the facts are - and today I can say that for real, without false pride. 

This doesn't mean I think autism is caused by illness per se, and that's not what I'm saying, but that's also not something I'll be getting into right now. What I will say is that although connecting with autistic community was good for me in ways, it had it’s damaging drawbacks and even, in a few incidences, it caused me deep hurt. Ironically, some of the internalized ableism in the autistic communities which I encountered, got taken in by, and felt pressured to fully engage in, hindered my ability to ever see my situation in full - and thus be able to help myself in full. I had to exit those muddily-clad, greyly hazed fields - those resentment fuelled trenches - to see things clearly. 

Aside from that, and overall, I think my obliviousness to what was really going on, back in the 2011 post, is a clear reflection of the gross lack of awareness I grew up with, in the first place. It could be compared to a child who was abused, and was so "worked on" in the head that he or she didn't realize they were being abused, even if that abuse was pretty blatant. 

Think things like "being smacked is normal" This could be compared to "pretending and being and talking like I'm someone I'm not, even when I cannot naturally do that without energetic efforts which are painful to me, has to happen. It just does. Right now. Do it. Perform. Do it"  and "Oh my bones, joints and tissues hurt - I'm too weak to lift that, to go on like this- oh thats ok, over-extend anyways, lift it anyways. Do it now. Has to happen. You need to do this - It doesn't matter if you shouldn't or truly can't. It doesn't matter if this is insidiously injuring you and causing you damage." It just kept on, and on, for years of quietly brutal self-injury.

People come away from prolonged exposure to intense stress, hardship and abuse and only then do they realize it. Then, they have to go through a process of seeing it for what it really was, understanding it, coming to terms with it, and looking at ways to recover. It's the same thing with the process of doing unnatural, uncomfortable and ultimately damaging things to yourself in order to get through and survive, because the accomodations in which you truly require are not being made. Sadly it's because for the most part, they don't really exist yet. Regardless, this could be equated with abuse too - in the form of neglect, because the effects are the same. 

Discovering things about yourself (whether it be autism, or a complex chronic genetic illness, etc) that always were, that you needed help, support and accomodation with but didn't get - This can be easily compared to realizing that you were abused via neglect. It's painful. It's emotionally intense. It is realized in stages. It is recovered in stages. So to have to convince others of the truth in which you have uncovered for yourself, when you yourself are going through this as it is - it feels doubly insulting. 

When you uncover the truths for yourself, it's a major process, to go through the layers of revelations and interrelations pertaining to it all. Being met with skepticism, disbelief and even outright cognitive dissonance during this process - There are no good words to describe how intrusive and additionally traumatizing that is. I have been through it twice, with the autistic spectrum realization and diagnosis, and with the Ehlers-danlos syndrome realization and diagnosis. 

I would not wish experiences such as the ones I have had, on anyone. I know many others have already experienced them, and that's bad enough. Now we have to protect our futures auties and zebras. This is one of the main reasons why I choose to be an activist. It does take energy but in moderation (rather than my past extremism) it's worth it to me. It's purposeful, and it always was, but the ways I did it in the past backfired on me, and further hurt me, too often. 

Even though I have said that I wish to hugely reduce the amount of time I spend on activism, it feels like the effect can now be "quality over quantity." To add to this, I have purged, deleted or tucked away any old stuff that, for the reasons I already described, just wasn't good (for me or anyone.) Now that I can see things more circumferentially, as they were meant to be seen in order to assert these issues in a healthy way, I feel like I'm ready and able to do this in ways that don't hurt me further, and be more helpful to others. It's always been the only way to do it. In the face of it all, I can't quit now. 

So mote it be. 

-Rosie G.

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