Saturday, November 22, 2014

Adult Diagnoses & Me...

I already mentioned many time that I was diagnosed with ACC and ASD in adulthood.  What I haven't gone to deeply in, are the pros, the cons...how being diagnosed has helped and hindered me.  That's what I'll attempt to do in this post.

In the year 2008, I was suffering from advanced Hepatitis C, with signs of my liver cells turning to cancer.  I was experiencing really extreme itching/pins and needles and neuropathy, that it turns out was directly related to the Hep C.

Now, first the back story:

When I was a child just of 6 years old I was diagnosed with what they thought was ADHD.  In those days, not even doctors understood the implications of ACC, a missing Corpus Callosum.  It's likely the doctors told me parents "he's missing a part of his brain, but he doesn't really need that" (UM, REALLY??? SMDH.) I was always socially awkward, even though I was very extroverted.  By the time I was in 4th grade it was obvious to my family something was going on with me, but in all fairness how could they know?

I was put into a private school that year, and to my memory that's when things began to go really out of control.  I only lasted one year in that school, I remember times of great fear, I remember lots of selective mutism and other odd and out of place behaviors...I had (have) a tremendous imagination, and am primarily ruled by it, as it overrides my logic most times, and gets mixed in with "reality."

By this time my parents were accusing me of being a compulsive liar and manipulator.  Notwithstanding I did lie, and manipulate I suppose, but not any more than any child my age.  My parents and teachers were not able to discriminate between lies and confabulations (nor was I.)  I was taken out of this private school (the Saddle River Country Day School) and brought back into the public school system, where I began to severely lag behind my peers.

I actually remember myself in Jr High, running up and down the hallways, acting pretty much like a 6 year old.  I'm sure this was incredibly frustrating for my parents, teachers and the like...but just imagine how frustrating it was for me to know that I could not connect with my peers.  I do not remember having many/any friends, and usually those "friends" were situational/circumnstantial, they were "friends" only because we were in the same environment.

Through high school age, I honestly remember only one friend, and him coming over my house ONE day.  I remember his name was Gerald.  By the end of Jr High, I was taken out of public school and put in the Archie F Hay Village School.  This "school" routinely restrained students, beat and put students in isolation rooms (read padded cells.)   I consider my real education to have ended at this point.  Never in my 18 years of childhood did I ever do homework, nor did I advance in my studies.

In Jr High, I was consistently bullied, shoved into lockers, beaten, spit on, ridiculed...but never told anyone about it.  To be fair to my parents I don't know if they would have responded or not, but I never really told them about the bullying beyond elementary school.  I was taking the notorious "short bus" to school, being harangued and bullied on a daily basis.  I even remember bullies putting lit cigarettes in my hair and burning me.

 To this very day, I have nightmares about this "school."  The bullying came from teachers as well as students.

We should remember that Autism was not even diagnosed in those days, neither was ACC...they called us "emotionally disturbed."  I can't tell you how deeply I resent that label.  There was no real education happening there; everything was done in units, and to be completely honest, I learned how to (read: they showed me how to) cheat on units and tests, so that I might pass and get a decent score.

Like others on the spectrum, I actually tested quite high in IQ, yet like others in my situation, I tested high, but was not able to use any of these "skills" in  real life situations.  I have always considered myself an "encyclopedia of useless information", I had the knowledge but not the means to implement it, nor an understanding of its implications.

While all this was going on, I also underwent sexual abuse, both at the hands of extended family, as well as a stranger when I was a bit older... My life was a nightmare.

More about having knowledge and not being able to implement it:

Out of high school, I took EMT training at the County level.  I did extremely well in the training, but it was obvious in my first job opportunity that I had the knowledge but couldn't use it in "real life."  My parents were of the generation that embraced the so called Protestant work 'ethic' and they felt that I was lazy, that I just didn't "try hard enough."  I began going from job to job to job, not taking care of my needs, not able to consistently manage money, perform my ADLs.  For this I got nothing but scorn from my parents and misunderstanding.

By the time I was 27 I was put on SSDI.  I remember them saying I had many score of job attempts.  I don't think I began to understand responsibility nor adolescence until I was in my 30s.  Even so until I was roughly 40 I spent my life "couch hoping" from one to another acquaintance, until I wore out my welcome.  I honestly remember expecting (even as an "adult") that I would find someone to "take care of me."  I had no sense of being able to self care.  In truth that has come extremely late in my life, and even today isn't consistent.

Moving forward again to 2008:
I was having these multiple neurological issues and the Neurologist ordered a brain and spinal cord scan.  When he received the results, I remember him calling me into his office and I remember that with some trepidation he sat me down, and he asked me "do you know you have a piece of your brain missing? You have what is called Agenesis of the Corpus Callosum."  Immediately I experienced a flood of emotions. Shortly after this I was diagnosed as having an Autism Spectrum Disorder. I was also diagnosed with PTSD.  All of this after years of failed wrong diagnoses due to lack of knowledge.

On the one hand, this was my eureka moment.  I had heard of this disorder before and known of Kim Peek the famous ACC savant that Rain Man was modeled after.  I remember thinking how ALL of my life, I KNEW that I was different, that I thought differently than other people, that I had a loose sense of reality vs fantasy, etc, and how horribly difficult social function was for me.  I had finally proof that I wasn't "morally flawed" like my parents would make me out to be, from a very young age.  Cubic tons of self imposed shame and guilt began to melt away from me.

I also experienced real rage, real anger...
I couldn't help thinking how if this had been identified at a young age, and had I received early intervention that I might be a different man today.  I also, actually experienced (for the first time) real compassion towards my parents.  They were not perfect parents (who's are?) but the truth is in my earliest years they did try to help me.  They really gave up on me when I entered my teens...the time when ACC dysfunction begins to really stand out.

Even today, this anger is real and present.  There is no going back in time, rewriting history, so the anger is largely useless.  The single positive direction I have been able to turn in, was to do things like create this blog and share with the world about autism and ACC, and perhaps make like better for the young children now being diagnosed with this disorder at and early age, that maybe, just maybe it will help their parents provide an ultimately supportive atmosphere for them, that simply could not have existed in my young days.

While the autism part of my equation is relatively well known in society, ACC has really just been researched in the past 20 years or so.  There are giants, the likes of Dr Sherr and Dr Lynn Paul  both of whom are working hard to advance our knowledge of ACC; Dr Sherr its genetic causes, and Dr Paul exactly how it affects the cognitive and developmental abilities of those who have it.

So, I guess there are positives to this, but many negatives.  I have been estranged from my family for more than 20 years, and I have lived below the poverty level, frankly since leaving home as an adolescent.  I still have to fight hard for accommodations, and you would think there would be solid advocacy, but there is not.  I do have advocates, but with very limited scope and ability or motivation to help.

It is all of you, reading my blog that makes my life worth living.  I have struggled with suicidal ideation and depression most all of my life, even to this very day.  The knowledge that I am helping parents with ACC and autistic children and adults with the same, gives me comfort in large measure.  I don't know what I would do without all of you.

Thank you all for being part of my life.

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