Sunday, July 7, 2013

Monologue to Dialogue... from Fantasy to Fraternity...




Living in/as the ACC brain, with autistic features, well, I can say at the very least that life has never been dull.

The "normal" give and take of a neuro-typical conversation is hard for us.  Still, we often carry on a monologue on a favorite subject, giving no one else an opportunity to comment. When given the chance to converse with others on the spectrum of ACC and/or ASD, we comfortably slip into a “parallel monologue”—taking turns expressing views and information.

Amongst ourselves, (others like ourselves) we feel right at home, comfortable, understood and understanding.

It is my personal theory that this is because (and research affirms this) we are far more comfortable in a so-called "right brained" experience.  We get into our subject, turn it inside out upside down and back again, examining and exhorting the matter at hand;  much like an artist with a paintbrush.

Other adults around me, that love me unconditionally, have stuck around long enough to observe my affect, my behavior and communications, and I've learned so much from them.  Troya, my adopted sister often commented that the person she knew "in writing" (i.e., online or whatever) was a mirror image, or "reverse image" of the person  she would/could talk with "in person."

Doctors uncovered in me what they call a working memory deficit.  This doesn't necessarily mean I have trouble remembering information, rather that I have difficulty recalling said information, at the right time and in the right order.  Much like a 4 or 5 year old child, if my brain cannot come up with "the answer" it will confabulate the answer.  Confabulation is not lying.  In fact, there is no volition in confabulation, other than to tell the truth as I/we see it.

Personally, this is a huge issue for me.  I can give a typical childhood example that might help you understand:

Because of my DDs, I have always had a really difficult time with ADLs, and performing them in any consistent basis.  I am 51 years old, and still have these issues today.  One such issue is oral hygiene.  By the time I reached my late 20s I lost almost all of the molars in my mouth due to severe oral disease.

Regarding this specific issue, on any given day my parents would ask me "did you brush your teeth today?"  The truth is, and I now understand, I didn't really know if I had.  I wasn't aware, obviously that I didn't know.  So, I would imagine myself brushing my teeth, and not only would I answer in the affirmative "Yes" but would imagine all kind of detail that did not really happened.  To make matters worse, this creates an extreme internal confusion, because some part of the brain registers the logical inconsistency of the confabulation, while another part "knows that it is true" and hence, extreme self doubt and lack of self trust occurs.

We also (I also) tend to have the "the fish was THIS BIG" syndrome.  Confabulation isn't a simple false memory, but one with extraordinary details, colours, shapes, and experiences.

Discovering this about myself, had brought me tremendous relief, expelled out of my heart and soul, years of distrust, hatred of self, and depression.  In fact, my good friends who are around me on a daily basis, because they know me can easily navigate the life of gurudasa/joseph.  If I say " you should have seen it, there were HUNDREDS of them", is usually taken to mean "gurudasa/joseph, he saw one today."

As an adult male, while this can and does still occur in my life, I still cannot "witness" or realize it happening, no...but I can become astutely aware that "something doesn't feel right, doesn't 'fit' " and I can ask  questions of those around me, checking my "reality" to their "reality."  It works, often enough.

I find that unless I am talking one on one with someone who I can trust, I am almost always in monologue/imagination mode.  I can carry on a dialogue for short periods with those I trust, those that understand my differences, but add just one extra person into the conversation, and I immediately return to monologue/imagination mode.

This can be terribly frustrating, not just for others, but for myself.  No amount of knowing what occurs can change my neural wiring.  The fascinating thing about ACC that is currently being studied, is just how do we compensate for our missing Corpus Callosum?  We never "correct" or "fix" ourselves to what we could be born neuro-typical, however we learn many functional (and dysfunctional) coping mechanism.  The single most powerful set of skills I have learned in this regard would be Dialectical Behavior Therapy developed out of the Buddhist insight tradition.  You might simply call it self awareness.  

I've been told by many ACC parent (and ACC adult) that I have a peculiar gift to relate my inner state, my emotional self (at least in writing) to others, where most ACCers and peeps on the spectrum (ASD) have difficulty with this.  Perhaps this is true, but it has not always been the case.   For most of my life, for example I could not tell you "I'm angry" when I was angry, or "I'm sad" when I was sad (internally speaking), and I would usually then, when overwhelmed go into a complete emotional meltdown mode.

I've practiced meditation and self-awareness techniques for most of my adult life, and I'm currently (almost) 51 years old.  I can honestly say, it is only in the past, oh, 7, 8 years or so that I was able to finely develop this skill of understanding and relating my "internal state" to others.

These days, I try to make more attempts at Dialogue.  Such is the only hope for me if I want to experience fraternity, belonging, "brotherhood."  And, (I know, don't start a sentence with "and") being able to identify my internal state and accurately relating it to others, I have found that I can get my needs met as I never did before.

I'm the cute little guy in the very front on the left!
Most of my life was spent in a "passive aggressive manipulation mode" because I felt/believed/thought/lived as if I possessed no internal power/choice/decision/ability of my own.  I find it strange, that in discovering my true abilities, I've been able to clearly identify  my deficits, and in doing so can then finally ask for (and receive) help.  My own family did their best to shame me, to ignore me, to blame me.  I have been called everything from psychopathic liar, thief, criminal and worse by my own father because he himself couldn't and didn't want to see me as I really am, but nursed a fantasy in his sick and twisted alcoholic brain.

Thank God, this is no more.  I'll not be bullied by family, by life, by circumstance ever again.

Now, all I can think about it lending a hand to parents of children born with my giftedness, and adults with my giftedness, perhaps showing them how they can do this for themselves too.

Life is SO good <3

~Joseph

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