Saturday, November 1, 2014

Today's Research for Tomorrow's Generation...

I'm blessed to be in the beginning stages of two different studies on Agenesis of the Corpus Callosum.  One is a genetic study, to try and discover the genetic markers for ACC, the other a connectivity study, to understand how the brains of ACCers think and work differently.  

While I'm excited for purely selfish reasons, to gain a bit more self knowledge of myself and this brain disorder, I'm really not doing these studies for me.  I know that a generation or so down the line, all of these studies will bear fruit that will help the lives of those born with ACC.  I have to deal with my own frustrations.  I'm a 52 year old man now, and I doubt that these studies will have direct impact on how I live my life and greatly improve it.

In many ways, I am a ten year old boy in a 52 year old body.  I am certainly highly intelligent, but I lack the social and emotional skills of even a teenager, and have difficulty with cognitive functions that most NTs find easy.  There are so many mysteries about ACC and Dr Sherr and Dr Paul are working hard to uncover them.  While I'm diagnosed with HFA (high functioning autism) in general there are strong similarities to autistic traits for those with ACC.  We are atypical, as in not sharing all of the traits all of the time, but we nonetheless have these.  I have enough to be classified autistic, but many have a smattering of them across the spectrum.

Studies show we have difficulty with certain cognitive and decision making processes, that we have difficulty understanding facial expressions or social cues.

In discussing this with my therapist yesterday, I explained what it was like when I was first diagnosed with ACC then ASD...you see, all of my life, I knew beyond any shadow of a doubt that I thought differently, that I didn't "get" things like other people did.  This wasn't in itself a horrible thing, but what dragged me down most of my life was my parental upbringing.  It was constantly drummed into my head that "there was nothing wrong with me" and that I just had a flawed moral character.

I know many would say "well, just grow up, you are not living with your parents anymore", but people fail to take into account how deeply our upbringing affects us.

When I was diagnosed, it was like a million lightbulbs going off in my head.  I finally understood that there was indeed nothing wrong with me.  I had gotten mixed messages throughout my life, "there is nothing wrong with you, just try harder" and "why the hell can't you just be like everybody else?"  Truthfully, it is/was no longer my parents holding me back, but it was  my programming, my view of the world and myself that held me back.

Just imagine going through life thinking you were a morally flawed monster, this is how I lived my life.  Always feeling like I was bad, cruel, evil, and non caring.  My own parents called me a psychopath.  It took my therapist to get through to me, that even with all the ACC confabulation ,and yes even sometimes outright lying that this is not sociopathy, she told me "all teens lie."  She also noted that I have an obvious overly deep empathy for others, and that sociopathy does not fit that distinction.

The current (young) generation of ACCers are being raised by parents that have a much better understanding of our plight. There is no question of any moral judgement, but an understanding that we simply do not think, process, or see the world like NTs.

Even through my late twenties, my imagination always dominated over my intellect/logic.  There was, within me a mixture of "how the world really was" and "how I imagined it to be" and these most often blended into something altogether different.  I remember being in my teens, and I was convinced that I was dying of the disease ALS.  I had told my parents this, firmly and fully believed that this was so, there was no intent to deceive, it was purely confabulated.

As I have matured, and am now 52 years old, I still confabulate, but nowhere to this extreme...yet there are, I'm sure even times today that I do not know fact from fiction.  I recall episodes with friends that I insist that something happened, or that we had a certain conversation, that they swear never occurred. Even using my logic, and telling myself they must be right so I will concede to their understanding, I still do not know it to be so, and think that I am correct.  I can't tell you how horribly frustrating that is.

When Troya was alive, she used to call it, "the fish was THIS BIG" syndrome.  She quickly understood that often when I described something, rather than take it literally, to look for the embedded message within it.  Simply put "the fish was THIS big" is really "hey Troya, I went fishing today."

This is one of the reasons why cognitive therapies don't work well with ACCers and ASDers, you cannot convince somebody of something which they know the opposite to be "true."  My therapist has often had to, many times even in the same session, continually reframe how I was understanding something, because it was not logical or accurate, or that I came to conclusions that were confabulated and "not so yet."

Connecting with some young adults that have always known about their ACC, as did there parents, they live in a different world than I did growing up.  I have no jealousy over them.  Perhaps I have some disappointment that it was not so in my case, but it honestly gives me great joy to know how much more ACC is understood today.  And I know that the research I'll partake in will help generations to come.

ACC is still a relatively unknown disorder by the public at large, but the fact is one in ten thousand births has a collosul disorder, even today largely going undiagnosed.  The thought that more and more children are being diagnosed at an earlier age makes me really happy.  Even with the relatively young understanding of this disorder, the odds are that the person with ACC will adapt and have a better outcome than the generations before them.

For this I am most grateful.

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