Thursday, October 16, 2014

The Developmentally Disabled Latchkey Generation...

I was born in 1962.  They didn't really know much about ASD then, and certainly knew nothing of Agenesis of the Corpus Callosum.  My first diagnoses was ADHD at the age of 4.  This was one of many (many) wrong diagnoses until finally someone scanned my brain at the age of 46 and saw my missing Corpus Callosum.  It wasn't long after that that I was diagnosed with high functioning autism.

My parents, they were born in a generation when things such as this brought great shame on the family.  From as early as I can remember my father ranted at me "why can't you just be like everyone else?"  Early on, they tried private school, and then I eventually ended up in the "Archie F Hay Village School for the Emotionally Disturbed" (what they called us in those days.)

It is clear to me that my parents (at least in my early life) did everything they could to provide me with a happy life, trying to mainline me.  But my father's motives were not truly for my happiness but to save them from embarrassment.  I only found out in my later life how much was hidden from my extended family and my parent's friends.

Keep in mind, that until the late 1970s people with any disability, physical, mental or developmental were not granted the rights to decide their own medical care, their own housing, their own vocation.  We were largely "put away" from sight for "the comfort of society."  I'd be lying if I didn't admit to a great deal of bitterness and rage about this.  I was also a victim of sexual abuse, and when I (finally) came forward to my parents/family about it they chose to ostracize me, call me a liar and not face the truth.  These are all symptoms of being born in that generation.  

It isn't so much that I blame my parents (personally), again, they themselves are simply products of the time and place that they were reared.  

I have personally spoken to many born without a Corpus Callosum like myself, and other adults that are diagnosed with High Functioning Autism and those of us that received our diagnoses later in life, we all have this same story.  It is gratifying to work with parents of ACCers today, and watch the way they engage in their child's life.  Much like the tattoo on my right arm, "I am different, not less."

My last neuropsychiatric testing had my IQ at 200...people hear me speak and hear my intelligence and I get "you can't be autistic" and "you can't have a piece of your brain missing" "you are so normal."  Yet these comments come from people that have never really spent any time with me.  Any of my friends that have lived with/around me for any period of time will see, rather quickly that I am not your average bear, but something different.  Those "you can't really be" comments usually come from people that are uncomfortable with the idea of intellectual or developmental disabilities.  It is a holdover from the developmental latchkey generation.  The DLG  is a term that my doctor, the chief of psychiatry for Kaiser Permenente coined as she explained this phenomenon to me years ago.
To this very day, my parents choose to blame my behaviors on "bad character" "there is something WRONG with you" "you just don't try hard enough", and they have refused to speak with me for decades now.  This brings me great grief and sadness.  Having said that, being involved in the lives of parents with ACC children and ACC adults and "righting these wrongs" gives me tremendous pleasure in life.  Hence the writing of my blog.

I'm 52, and I would say to all adults of my generation and older, to open your hearts, your minds and see that this is so.  See how individuals like me were marginalized and shut away and ignored, or worse blamed and maimed for there differences...and then you go out and make a difference.

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