Saturday, January 31, 2015

ACC...You Can't Judge a Book by It's Cover...and the Book has Difficulty Explaining Itself...

I think one of the most difficult aspects of living with ACC, both as a child and now as an adult is that we present so well.  Actually, we don't really to those who know what they are looking at/looking for, but to the average person they cannot see what goes on in the inside of us.  Not all disabilities are visible ones.  In some ways, I wish I had been born with a visible disability, then maybe I would be understood, or at least people would take me at face value...but this is not the case for most of us with ACC.

One of the striking things about (my) ACC is that I have always considered myself "the encyclopedia of useless information."  What I mean is that I collect lots of facts and figures, but I do not always understand what they mean...and when I do, I don't understand them in a higher cognitive concept, I may not understand how they relate to the greater world at large.

Dr. Brown and Dr Paul at the Cognitive and Psychosocial Abilities in Agenesis of the Corpus Callosum study I just undertook in Pasadena Ca, might disagree, but it seems to me, anyhow, that those of us with ACC can often test more highly in a controlled situation, but that the same knowledge in "real life experience" can often fall short.

Kim Peek
Dr Paul brought up some things that I initially was not all the comfortable with...We were discussing Kim Peek the ACC Savant.  I was talking to her about his absolutely profound ability to pick up a book, read two separate pages with his two separate eyes and memorize it's contents seemingly instantaneously.  She commented to me, that although Kim could do this, he would often not understand the contents he read, or it's relevance in the "bigger picture."

I have to admit, (firstly) I am not a savant, so I am not comparing myself to Kim's profound ability, however my brain can contain in inordinate amount of information but may not know how to use it in it's proper context.

This relates to my current topic in this way:  I learned how to pass very young.  Learned how to appear "normal" when I was in society (or so I thought I had.)  From a very young age I had a very high verbal vocabularly...I seemed to say the right words.  Yet by my own admission, also from a very young age, I learned how to manipulate words so that I seemed more on top of things than I really was.

The book of my brain that I was trying to explain to others, I could not do.  Although I have acquired some capability in Theory of Mind today, albeit not perfectly, I did not have this at all as a young child, or an adolescent.  Rather, for the most part, when at any time a parent, a doctor, a teacher or a therapist wanted to know "what I was feeling" (what was going on inside me) rather than (be able to) explain this, I most often confabulated great stories out of my imagination, parsing together the bits and the pieces of my knowledge and memory along with my profound imagination in order to come up with information that was "passable" (I thought "understandable") by those asking the question.

The unfortunate thing about this, is I went through the majority of my life, my childhood, adolescence and a great deal of my adulthood, never once being able to share what was really going on inside my world.  My ACC not being discovered until 2008, this led to many and fabulous wrong diagnoses by mental health "professionals", led to my being medicated with all kinds of inappropriate medications that made existing problems worse and created new problems of their own.

When ACC is not identified, it is my opinion that a lot of damage can be done by well meaning parents, educators and doctors.  It is also fair to mention that these same can only go by what is before them, by what they think they observe.  Having said that, I believe it is of the utmost importance for those working with ACC children and adults to learn the facts about this brain disorder...in essence do not judge the book by it's cover.

Probably the most common comment I hear from parents is that their child's educator is not responding to their child with ACC, but responding in a way that shows that they do not understand the disorder.  I have to believe that educators want to respond appropriately, but I have also seen so many that dig there heals in, and do not want or feel it necessary to understand this difference...this I will never understand.  I've also observed it in adults: "this didn't 'exist' when I was a kid, so it doesn't exist now 'they' should just 'cope' like I did/everyone else had to."  This kind of thinking makes me absolutely nauseous.

On the parent's or concerned adult's  side of things, I think it important to help the child or adult with ACC to develop self reference, Theory of Mind, mindfulness, a "framework with which to be able to relate their inner world in appropriate ways.

Whereas on the one hand, a non-verbal autistic can have a highly developed internal world but not be able to relate to the "outside world" with ACC we can and often do have highly developed speech, but this "speech" is not truthfully connected in a meaningful way with our internal experience/reference.  In my case, my speech and reference were tied directly to my imagination, rather than my reality.  I can understand how this can mislead parents, educators and doctors.

I will say that even today with a more developed sense of self and internal reference, there are many times when someone asks me to describe my internal experience that I cannot that I become at a loss for words, or that I will instead relate some "information" that I have currently going on in my mind but that may not really be linked to it in any way that an outsider can understand.

For me personally, this creates a great sense of frustration.  Like many of my peers with ACC I have average or above average intelligence, so people's expectation of me doesn't match the reality of who I am.  I still have cognitive, emotional and social differences that aren't apparent to someone until they spend any period of time with me.  After they do, they think I have "changed" but the truth of it is they have gotten to see me as I really am and they are confused by the incongruity of how I show up.

At the age of 52, I still experience a great deal of loneliness.  Unlike classical ASD, those with ACC often enjoy and desire to be social yet we do so falteringly.  I've always said that I can quickly gain rapport with just about anybody, but once I have it, I haven't a clue what to do with it, haven't a clue how to maintain that relationship in appropriate ways.

In short, I've come to expect all my friendships and relationships to eventually fail, or at the least stalemate.  The exceptions to this have been those who learned about my neurological differences, and choose to accept them as they are.  They acknowledge that I may show up in some rather unusual ways at different times, come to expect it, and do not reject me when that occurs.  It's my opinion that all relationships should be like this, yet society expects us to fill certain roles, to fit in certain notches, to not stand out.  Thing is, I will never not stand out.  I know this.

I am grateful today that not only are those that tolerate my differences, but they even celebrate them.  They themselves have come to realize that our world is far more variegated than the black and white reality many claim to only exist.

I would say to parents and educators, that your ACCer is not like her/his non-ACC peers.  What appears on the outside does not necessarily match the inside, the reality, the felt experience of your ACCer.  We must find ways to inside of the internal psychological/cognitive and emotional world of people with my condition.  Judging or comparing them to, or expecting them to show up as Neuro-typical people is just absurd, will lead to there frustration, failure and an incomplete outcome of all they can be.  When you ask your ACCer "what is going on?"  be aware that they themselves may not have a clear description of it, they may have an incomplete awareness of their internal experience, may have no frame of reference with which to relate to you what is going on in their world.  They may use words, explanations, even fantasies to try and do this.  They are not evading you, or being deceptive, rather you are asking them to do something that is simply not in their wiring.

Teaching Mindfulness, self-awareness, internal frames of reference...these things are not easy to teach, yet they are not impossible.  I myself was in my mid thirties before I had an accurate gauge of my internal world, and a way to describe it to another.  Even today though, I might default to some learned response of telling your, rather than "what is really going on" what is in my imagination, or comparing my experience to something I've read in books, but may not completely comprehend.  Luckily there are those around me aware of this, they can coax what self-awareness and mindfulness I possess out of me, helping me to use more cogent language and description of my internal world.

My thanks to all my friends who are helping me along this path~

~Joseph

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