Tuesday, December 30, 2014

Picking up all the pieces...

I know there are some adults with ASD that reject the symbolism of the puzzle piece.  I can understand this, since (I believe) it originally came from the organization Auti$m $peak$.  If you wish to be supportive to families dealing with autism, they are the last place you'll want to put your hard earned money and support.

You might ask why, well:

  • Auti$m $peak$ does not have a single autistic member on their board.
  • Auti$m $peak$ only spends 4% of their budget on “family services”.
  • Much of Auti$m $peak$’ money goes toward research, and much of that research centers on finding a way to eliminate autism, and thus, autistics (which will likely be done through a prenatal test, in the same way that the Down’s Syndrome test is conducted).
  • Auti$m $peak$ produces advertisments, small films, etc. about what a burden autistic people are to society.
  • Auti$m $peak$ was responsible for “Autism Every Day”, which featured a member of their board talking about contemplating murder-suicide of her daughter in front of her daughter. This has now be removed from Auti$m $peak$’ Youtube channel.
  • Auti$m $peak$ is responsible for the atrocity known as “I am Autism”, a short film produced by the same person who directed the 3rd Harry Potter movie (yes, really) and features an ominous voice saying things like “I am autism…I know where you live…I work faster than pediatric AIDS, cancer, and diabetes combined…I will make sure your marriage fails.”
Now that I have gotten that off my chest (LOL):

Having both ACC and ASD, I am always struggling to put all the pieces together in my life.  Much like the childhood puzzles I remember playing with, I would rearrange the pieces and put them back together, but the last piece would never fit.

Having said that, much like the picture above expresses, I always feel like the odd piece left out.  I don't quite fit in the ASD community, or the ACC community, or the "normal" community, my religious community, and just when I think I do, that one last piece refuses to fill the hole in the puzzle.

Much like the hole in my head, I exist with a hole in my heart.  I don't blame the world for this, nor do I exactly blame myself, but such it is...Like many with ACC (or ASD) I often find myself at odds with even those others born with the same condition as myself.  I suppose this shouldn't bother me, I know this is true for NTs in the "real world" to a large extent also. I am particularly feeling this in the holiday season.

For whatever reasons, unknown to me, my family feels such shame about who I am, that they must make up lies and stories in their heads, to reject me and "protect themselves" from harm.  Even in the face of direct medical evidence, MRIs of my brain showing my ACC, doctor's reports diagnoses my Autism Spectrum Disorder, they still insist "I am a liar", "I am looking for attention", "I fabricated my illness" etc...

This isn't much different than others in the NT world I come across, even well meaning friends.  I'll hear comments like "you don't look disabled", "you don't sound disabled", and more...Answer me this, what the hell does  disabled look like?  With the deepest respect to those on all parts of the spectrum, not everyone with autism is a mute headbanger....furthermore, not ever mute headbanger is intellectually disabled.  Everyday it is found when nonverbal autistics find a way to communicate, be it a sound board or a keyboard, some of them have extremely high intelligence, while remaining in a "locked up body."  Some like myself pushing 180 or higher in IQ speak very well, even eloquently, yet cannot manage the subtlety of face to face communication, social cues, and have severe issues with memory and executive function.

I guess what I am trying to express is my experienced exhaustion with trying to fit into the molds other people create for me.  Perhaps, I will always be the odd piece out if this is the case.  I think rather the world is one great interlocking puzzle to which each person has a unique function and place.  As Einstein said "Everybody is a genius. But if you judge a fish by its ability to climb a tree, it will live its whole life believing that it is stupid."

Those that love me and support what I am doing are constantly reminding me of this.  When I express to them my grief of having a family who abandons me, they remind me of the good things I am doing in the world, and the lives that I touch in doing so.  I want to take this moment, and thank all of you who have and continue to support my efforts to educate people about what it is like to live with ACC and ASD...To those that offer me sometimes even daily encouragement, when I am down, I am most grateful.

I'm unsure what 2015 holds in store for me, and when I sometimes look, and see no light at the end of the tunnel, you are there at the tunnel's end calling me forwards out of the darkness.  I honestly don't know what I would do without all of you and your encouragement.

May all of you that are reached by my blog have a most blessed 2015, and onwards.


1 comment:

  1. Hi Joseph,

    I just wanted to say that I get a really warm feeling from reading your post. I've been a bit in obsessive blog-reading land, trying to make sense of my own self and being... probs ASD (undiagnosed adult woman...) and this post of yours was the first ALL the long day that has just made me sink a bit into my bones. Thanks heaps for sharing. Yeah, I feel a bit with the puzzle pieces too, both the "shuffle them again but the last piece would never fit" and the "odd piece that doesn't fit with others in any of the communities." I know this post is over eighteen months old. I hope you're doing well. Best wishes in your most worthy and courageous journey.