Friday, December 5, 2014

The Importance of ACC Research...

So, I am very pleased and excited to be asked to participate in a study about Agenesis of the Corpus Callosum...

Having spent the greater part of my life undiagnosed for either ACC or ASD, when I became diagnosed (and even today) I hold a tremendous amount of bitterness, regret and anger in my heart.  I know that with early intervention those of us with this condition can be taught to thrive, regardless of our disability.  I myself was not diagnosed until I was 46 years old...that, despite growing up with unidentified special needs, going to "special" school and the like.

Complete Agenesis of the Corpus Callosum
In those 46 years, I received many wrong diagnoses, everything from bipolar to schizophrenia, to God knows what.  In 2008 when I was diagnosed with ACC then ASD my doctors clearly expressed that all of these diagnoses were incorrect.  Today, besides ACC and ASD, I still hold the diagnoses of depression, PTSD and ADHD.  I jokingly tell people I am "alphabet soup."

It isn't just the fact that my outcome would have been different with early diagnoses...but all these wrong diagnoses, and treating me with inappropriate therapies and medications wreaked havoc on my mental and emotional health.  Until the age of 46, I carried around tremendous self-imposed guilt, shame and hatred, always knowing that I was different, but never understand just how different, or why I was different.

On top of this, I spent the majority of my life continually trying to do things and be someone  I was not.  The old saying of "doing the same thing, expecting different results, is insanity" applies here.  Prior to my being put on SSDI in my mid to late twenties, I had well over 50  job (attempts.)  The longest I lasted at any job was six months, but usually they lasted no more than a few weeks to a month, sometimes only days.

Now, I just want you to imagine what that would feel like for you, if you were me.  Can you for a moment imagine the shame and guilt, the self blame that you might experience, if you try and try and try and never get new results?

I grew up with two very hard working parents, and I never lacked for anything (physically/monetarily), and for that I am very grateful.  Yet my parents grew up in a generation that worshiped the so-called "Protestant work 'ethic' ."  I was constantly led to believe that the cure for all ills is just applying yourself harder, working harder.  And if you couldn't do this, in their eyes, you were morally or ethically flawed.

Like many with ACC and/or autism I am very intelligent, and in controlled environments I can test highly on IQ, and different functions, but given those same tasks in a real life uncontrolled situation I consistently fail to perform at an optimal level.  While today I am learning to accept myself as God created me, I still default back to being self-critical, judgmental and even hateful towards myself when I can't perform as an NT.  I'm learning to change this, but the change (any change really) does not come easy for me.

Next month, I am going to participate in a study on Agenesis of the Corpus Callosum under the wing of Dr. Lynn Paul and the Corpus Callosum Research Program and I'm incredibly excited about this.  My parents to date refuse to believe in my disability.  I had (and still have) major issues with confabulation, and was branded by my own parents a "psychotic liar" (which all of my doctors emphatically denounce as false) and even worse.  I've not had any meaningful contact with them in well over 20 years.  Dr. Paul is so well known, and her research is so well respected, I'm hoping that my parents get wind of this study, and maybe they can have a change of heart.

They (my parents) even accuse me of fabricating ACC and ASD.  And I ask you, how can I fabricate a literal hole in the center of my brain?  How can I fabricate enlarged ventricles that take up a major portion of what should be the occiputal lobes of my brain?

Needless to say, participating in this study has me feel that I am getting some retribution (not sure if that is the right word) and acknowledgement, even while my own family refuses to accept the facts.

There are many like me, adults with ACC and other comorbid disorders that are rejected by there families.  Hell they didn't even have the term autism until I was out of school, and ACC, these stupid doctors would just tell parents "he's missing a little part of his brain that he doesn't need."  EXCUSE THE F*CK out of me, but who in their right mind could say with an honest face that you don't need a piece (an extremely important piece btw) of their brains?

I'm not going to pull punches here.  I underwent loads of abuses in the so called "Archie F Hay Village School for the Emotionally Disturbed" including restraints, beatings, isolations and more.  I endured the ridicule and rejection of my own flesh and blood family...false accusations, blind judgements and flat out shunning.  To this very day, I have regular nightmares and night terrors about what was done to me in that school.  I am quite certain my parents did not know what happened, they did not want to know what happened there.

And, despite the fact that I have always had a very high verbal IQ, I was not able to, nor did tell my parents anything about those abuses.  I also underwent sexual abuse of relatives, which my own parents still insist I am lying about, not to mention the horrible bullying and emotional abuses from my own father.

Dr Lynn Paul
Dr. Paul, well, she is one of my heroes.  The research she is doing is already improving the lives of children and adults with Agenesis of the Corpus Callosum, and will have a profound impact on the lives of those like me born in the future.  I am so proud to participate, and feel a great deal of vindication (that's actually the word I was looking for earlier.)  IF in the presence of all this research and data my blood relations still refuse to recognize my ACC, to recognize my ASD and my differences, and why I was the way I was/still am I will finally be able (even though with great sadness) to wash my hands of any responsibility towards reconciliation with my family.  It tears my heart apart that my parents are both very old (77 and 80) and they may soon go to their own deaths never knowing what a wonderful and special person I am.

So, thank you Dr Paul, and also thank you Dr Sherr (another ACC study I am enrolled in) for believing in me, studying me, using what you learn about me to improve the outcomes, the lives for many in the future!

1 comment:

  1. Thank you for sharing your story. I have an adult 25 year old woman who I am caring for that is struggling with depression/anxiety.