Saturday, August 16, 2014

The Web in the Head

One of my ACC symptoms I refer to as the "web in my head."  The spider, is my imagination, my thought stream, 3D holographic images, "real-time."  Such is a great when one needs to call upon creativity, spontaneity, and intuition, this is certain. Where the "rub" comes is that this is a dominant feature of my thinking process.  So much so that it can interfere with logic, and "reality" (the world according to everyone else.)  It is free association, gone a muck. 

The average or "typical" person may even have this kind of access, yet largely this is guided and held together in the larger frame of rational, every day to day "meat and potatoes" functioning.  My thinking process surrenders and sacrifices executive function, planning, organization and regulation skills and puts all it's energy into this web of thought.  The constant dialogue of the subconscious, with whom the typical person is only vaguely aware, but for me it does not shut off, but in my sleep.

I was about 7 years old when I realized that mine was not the mental process of typical people.  My peers in school had already begun to cognitively separate "the world out there" from there imagination, but I had not.  In fact not only had that begun but that my imaginative process only continued to become stronger and more dominant.  In 3rd grade I was laughed at and mocked by fellow students because I still believed a fantasy about space ships and aliens, which for me were just as real as the classroom we all shared.

I think I was about 15 years old when I began to comprehend that the world of my imagination did not (always) represent "reality" "out there." The famous Autistic author Temple Grandin refers to this as "her life in pictures."  My thoughts are primarily represented in very strong, vivid internal imagery, and often this imagery overlays what I am seeing, hearing, communicating.  This has led some to wonder if we were "on the same page" many, many times in my life.

I've often tried to estimate and describe to others what this is like.  One analogy I return to again and again is this: "my 24 hour day of thoughts is equal to your entire week...", over thinking in the extreme.
 I get exhausted so quickly with social contact, as the studies have shown I don't pick up facial expressions and subtle body language, unless they are overt and obvious,  I demonstrate an audio processing error as well.  

While all of this is clinically observed, it is difficult to discover which is the chicken and which the egg.  Phenotypically ACC can effect a person in so many different ways, are the autistic type features of ACC primary or secondary.  I've gotten to the point where that doesn't so much matter to me.  Getting occupational therapy, and DBT and other helfpul tools to work with it as it is, is so much more important than "understanding" it.

While I do rather well expressing thought in writing or monologue I seem to fall short in dialogue.  The entire reflexive process of communication, the "back and forth" of it doesn't operate with me like it does in neuro-typicals.  While I have a higher than average intelligence, and retention of long term information, I lack in the areas of short term memory transfer/working memory that is necessary for communications and higher logic, the "swap memory" that enables the brain to multi-task. (We do not/cannot truly multi-task, but the typical brain itself excels in it.)

ACC often shows up in confabulation, conflation, and correlation of thoughts, images and ideas that the brain creates in order to cope with failed memory encoding and retrieval.  I'm often, if not entirely unaware that this is occurring until it is pointed out to me by individuals or situations that my thinking is not in line with the evidence around me, what others see/think/experience of a situation.  The story in my head and the "solid world" mix, they don't collide.  

I do not and never have "heard voices" or "seen things..." or any of that sort, but the subconscious, internal, free-associative dialogue in my head is never silent, excepting deep meditation or sleep.  Most of you have some awareness of your mind's dialogue, but have never, could never experience it as I do.  Largely it is as if I have no subconscious, or at least not a singular "separately operating" one.  Real-time and memorex are always blending together...which results in easy quick exhaustion.

In my last neuro-psychiatric evaluation it was found I had rather good cognitive skills when tested in a controlled "steady" environment.  However it was also seen that as they put the pressure on, increased the difficulty and speed of task, my executive function flew out the window, and my ability to "follow' quickly breaks down.  It's like my four speed transmission only goes into first and second gear.

I know there are a lot of people out there the push aside the possibility of using medications to lessen symptoms, and I'll respect their opinions, but I'm pretty set in how I feel about this.  The chief of psychiatry and my neurologist have me on low dose Respiridone, an atypical anti-psychotic prescribed sometimes for ASD and ACC folk with varying results.  For me, the results are immediate and profound.  The "web" spinning out of control, happens much much less, I tend to obsess less on the confabulations, and it is easier for me to connect with people "in the world out there."  I've tried several times to go off of it considering that perhaps my cognitive skills would help me cope and think differently, but to no avail.

Sleep is problematic for many, if not most with ACC as well as those with ASD.  In ACC, we have trouble with any of the regulatory functions of the body/mind.  When the average person sleeps they go through several sleep cycles throughout the night.  After REM typical individuals "surface" to a very light sleep state, almost awake, and then go through the next sleep cycle...

I'm different...
Without medication I can easily wake up (fully and completely) after one or two sleep cycles...and this isn't a slow waking up, this is "all the lights are on, and the stereo is blasting."  Whatever first conscious thoughts are in my mind I will tend to obsess on them rapidly, not able to shut them down, and I'll become not only wide awake but particularly anxious and disturbed.  It is at this time (with the meds) that the web in the head spins out, full blast.  So, just imagine you go to bed at 10pm and your eyes open wide at 1am, your mind fully engaged in thought about something (could be anything, something simple to something complex and worrisome...) This is what I cope with on a daily basis.

 I am always caught up in a story, if not sleeping or in deep meditation, that story so visual, so innate and natural that it can blind, confuse and distort "the world out there."  Also when the spider mind is spinning this web, I completely forfeit my ability to comprehend Theory of Mind.  In short TOM looks like "I have these thoughts, thoughts are things, I can listen to, or ignore them, and the same is true of other people."  This is an a priori accepted "fact" for most neurotypicals, not for me.  Even amongst NTs one sees strengths and weaknesses in TOM, but nonetheless on some level it is still present.  For those periods of time where it does not exist for me, I become victim of my own thoughts and imaginations.

For me personally, this is one of those features of ACC and ASD that has frustrated me my entire life, drowning in the ocean of my imagination. I have spent a better part of my life perfecting DBT skills and meditation, they both help immensely, but do not "cure" or "solve" this issue.  Primarily my task becomes and remains one of self-acceptance and the rejection of a victim mentality.  When the MRI came back, and the medical doctors, neuro-psychologists and psychiatrists all came back with and diagnosed me with ACC (first) and ASD, I no longer felt like I was the out of control victim.  In fact, I was never out of control, I was living out exactly who and what I was born (in this body) to be, and that I need not be like, behave like, think like other peoples, and that my success will not look like any other's successes or failures.
“Everybody is a genius.
But if you judge a fish by its ability to climb a tree,
it will live its whole life believing that it is stupid.”
― Albert Einstein
I know there are some ACC folk out there that clearly understand the confabulation I am referring to, and the web of mind, etc...and for many of us we thought of it as our "dirty little secret" too ashamed to, or simply unable to describe it to others, as many of us didn't understand until we were diagnosed, at adulthood...I'll say to you though that you are unique, and perfect as you are.  Doesn't mean that life will not be any more or less difficult than other folks, but accepting who you (I,we) are will go a long way (perhaps the longest way) in healing what can be healed...the harsh self judgement, even hatred, the frustration and anger...these things can and do resolve if we start with the base of self-acceptance.

Justa Guy

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