Thursday, March 27, 2014

"But you look so 'normal' ... " :(

If I had a nickle for every time I heard that I'd be wealthier than Donald Trump.  

The Rub:  
NONE of these people would care to be around me long enough to see how I interact in "real society."  They either know me online or casually through a group or something, but have never seen me "in my own element."  I had someone the other day on Facebook message me "you are the most together person I know," it was at that point I realized this person knew absolutely nothing about me, and how hollow their words/comments were.

It is true, many with ACC and ASD "put on a good show" we can perform good on certain types of tests because they are in a controlled environment.  But life is not a controlled environment and never will be, and to think that the same results one gets in a clinical interview will necessarily reflect those in a social setting is ludicrous.  Thankfully skilled clinicians understand this and these factors are most often taken into account during testing.

I studied to be a Medic, was top of my class, but could not work as a medic.  I even did basic training in the military.  Basic was difficult, but I succeeded, but when I was put in my Advanced Individual Training there was so much less structure and discipline that I completely fell apart.  I went to Massage School, I studied Hypnotherapy, Studied Psychology, same difference.  I have a "high technical aptitude" in some areas, but left alone to carry out technical tasks cannot do so.  Then I get told "you just didn't try hard enough."  I said it in  a previous post, but I am sick and f*ck*ng tired of hearing that, because it simply is not true.  In fact in many areas I have tried and tried to my detriment, piling up so much self-guilt and self-shame that it was paralyzing me.

My sense of time is different than yours, compare my 24 hour day to the things you think about and do in a month, and you come close to the activity in my brain.  Were it not for the stillness of meditation I know I would have taken my own life decades ago.  

A never stopping flow of free association and imagery with with single breath I take; every thought I have has a thousand counter thoughts and images, every single waking minute (and sleeping minute) of my life.

Because I don't have a Corpus Callosum I have complicated issues with memory.  Sometimes a memory is not recoverable, or doesn't even form in the first place, and when that happens my brain confabulates an answer.  Sometime I do, but most often I have no idea this has taken place and will argue my point of view.  It could look like this:

My mother would ask "did you take out the garbage" and my mind would manufacture an image of me putting the garbage in the can outside and I would say "yes", (I was not lying to my knowledge I put the garbage out), then she would still see the garbage in the kitchen, I would be beaten for this (and similar) and eventually branded a "psychotic liar" by my own father.  Thing is, I had absolutely no idea that any of this was taking place until I discovered my ACC, and even know I am only vaguely aware if and when it happens, mostly by the reaction and response of those around me..

Much as Temple Grandin speaks about I think entirely in images.  I don't know if others with ASD
experience this or it is an ACC thing or what but for me those "internal images" are overlayed on top of "reality" on top of external imagery.  This doesn't mean I hallucinate images, it does mean that my brain is telling me to see things in ways that are entirely inaccurate, or at the very least not in line with what the majority of others see.

I'm fatigued, tired by the humiliation and derogatory insults of others.  I can not accept the premise that "something is 'wrong' with me" because this is all I have, and what I am born with, and it is not going to change.  

Well meaning people saying "but you don't look _____" don't realize what an insult, what a put down this is.  Usually people say this, because it is too frightening, too uncomfortable to believe the truth that is being presented to them.  I see it mostly in people my age and older, as that generation has some queer attitudes and ideas about mental and developmental disabilities.

signing off for now,
~J

2 comments:

  1. Please try to rethink their comments as compliments as it means you're compensating very well and they aren't noticing anything different about you; they don't understand the struggle keeping up that appearance is for you ~

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  2. But you see, this is exactly my point, you can't notice or see, the disability is always invisible to the abled, you only think I'm compensating well because you are not walking in my shoes (Speaking rhetorically, not shouting at your dear <3 ) they also do not understand the struggle, that much is true.

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