Iron out the wrinkles: Autism Speaks and it's "advocacy"

Don't get me wrong.  I'm all for support of autistic people.  We should be supporting them, though... Not trying to fix them.

Read this.  Have a look, let it sink in.

http://autisticadvocacy.org/2014/01/2013-joint-letter-to-the-sponsors-of-autism-speaks/

I'm on the spectrum.  I have a form of autism called "dyspraxia".  Back when I was diagnosed at the age of 6, it was called a "learning disability", because the major way that it operated affected my learning.

See, I couldn't write a legible thing.  No one could read my handwriting.  It was widely known I had a much larger than average vocabulary, but I just couldn't EXPRESS myself.  The school actually bought my family a computer, an Apple IIe, so that I could write.  I hated writing as a child, now it is something I love.

But adding to the other difficulties, there are some social aspects of the disorder which caused me a lot of trouble in school.
I took things literally.

One kid, his name was Ricky, called me a fox in Kindergarten.  I was offended and really upset.  I ran home crying to my mother saying that someone had called me a fox, and I certainly was not that furry!  Or had 4 paws, or a tail, or anything that resembled a fox what so ever.  My mother was confused, but then when she realized what I was thinking, she chuckled and said "he thinks you're pretty, honey."

In all of my medical documentation of that era, there is a running theme of "above average intelligence" but there is also a running them of "beautiful little girl".  "This beautiful six year old girl...[medical jargon]"

Up until a few months ago, I had never seen the paperwork, my parents never told me what I should and should not be able to do.  They always just told me to try my best, to work my hardest, and that things may take me a bit longer, but that's ok.  "Just take your time and you'll do just fine honey."  They taught me perseverance.

Another part of my Autism is the fact I am hypersensitive, but with that hypersensitivity comes the ability to be very in touch with my emotions, something that has served me well in this past year especially, but also in my life.

I'm not saying I'm a more "evolved" human being, or something like that.  I'm just different.  I think of things differently, I process things differently, and you know what?  As long as I am not hurting anyone, my differences are perfectly ok, and in fact, are part of what makes me who I am.

In the anime "FLCL", there is a running theme of a huge iron that serves as a factory on a river.
They refer to "Ironing out the wrinkles."  Taking all of the individuality out of a person, making them "ordinary."  That thought is dreadful.  Mr. Rogers wouldn't be impressed folks.  He told all of us he loved us just the way we are.  And yes, he meant it.  If you flatten the image, how dull it becomes!

So, organizations that wish to "eradicate autism", a disorder that is pretty much a different way of thinking and feeling, makes me angry.  Those who are affected who can't speak?  They still have feelings, they still find ways to express how they feel about things, they are still HUMAN, and most of them are pretty darn happy with who they are.  They know they think differently, and in most cases, don't care to think like you at all.  They are happy with their mind and where it wanders to.

If you are a parent to one of these wonderful non-neurotypical individuals, cherish them, love them, listen to them, and if they can't express what they are feeling to you, try another way.  Try handing them a notepad and colored pencils and tell them just to draw whatever they feel like drawing, show them music, show them art, read to them, interact with them, and if they are giving you signals they need to be left alone, leave them alone, but check in every now and again.  When they are done in their own little world, they don't always know how to tell you that.  And you don't have to say anything to them, just stoop quietly somewhere in the room.  This says "I'm listening and I'm waiting for you to come out."  And they will.

My oldest son is autistic and falls on the spectrum at what would have been called "Asperger's disorder".  He is a loveable kid with a lot of energy, who just likes to talk about the same 5 things over and over again, BUT, he's brilliant.  There isn't a subject in school that I think could get the better of him.  Emotional intelligence though?  Yeah, that's sorely lacking.  He can't accurately express his disappointment, and it comes out as rage and temper tantrums, screaming again and again "it's not fair!"
Yeah kiddo, hate to say it, life isn't fair.

I tried to protect you guys, but because my social queues weren't what they should have been, I missed obvious signs of pedophilia in someone we lived with, and the state took you away.  What's fair about that?
Nothing, because life isn't fair.

Yes, the state can take your kids away because you are autistic.  And THAT, is something to scream about, and THAT, is the fault of these misguided advocacy organizations telling the government that having your brain work differently is a PROBLEM and should be eradicated.  If you are harming no one, it should not matter how your brain works.  If you are causing harm to someone, then we should start talking about law and how that comes into play.  But shit, I can barely tell if someone wants to be my friend or murder me, how am I supposed to know how to spot someone with an intangible disease that half of the time psychologists, who by the way are trained to spot these things, cannot even determine reliably?

People fear and attack what they don't understand, like the witch hunts in Salem in the 1700's.  Or an earlier example, the dark.

Now, I know that much of what I am saying will likely get misinterpreted.  I'm ok with that.  These are my opinions, and I am sharing them knowing that not everyone will agree... Let's just not be dicks about it, ok?

Adventures in turning off the big fan

"Turn off the big fan outside, would you?"
He asked.  He was my colleague and mentor at work, and I had gotten into the habit of writing him when I got home because at least  someone cared that I had arrived safely.  My husband seldom noticed.
I didn't decide to take the adventure, so much as the adventure chose me.

Adventure is a kind way to put it.

A few days later, inklings came, which made me suspect that everything I knew and came to accept as true weren't, and that my greatest nightmare had come real.
And I decided to go and turn off the fan.

My solid backing, family who helped me erect my building of brick and stone, I stepped out of the safe confines of my house and jumped.  

The wind was intense, I watched my husband blow away, my adopted sister and nephews next, her boyfriend, an old friend of mine, blowing past, beyond where I could reach them.

I was in a wind tunnel.  I started grabbing wildly for familiarity, my sons next, I got a hold of them, but could not hang on, my heart broke, and I stumbled.

Cat saw me and threw a rope, I grabbed on, still trying to grab my boys, my mom, still trying to stand against the wind, mentor with cleats dug in, standing behind me, trying to hold me up, he blew away.

My eyes hurt from the dirt in the wind, tears fell.

In the swirling noise of the void, days faded into one another, more crazy random things blew my way.  I grew tired.

George came up behind me and showed me how to cinch the rope around my waist.  He showed me how to brace for the gusts and how to breathe in the madness without allowing it to consume me.  I tried to lean heavily on him, and he allowed himself to be blown away, "That's not the point of the exercise, Dee.  You can't change it, so embrace it."

I sat clinging to the rope for dear life.

But then, the fatigue set it, the horrible, horrible fatigue that sets in after holding a rope for 6 months.  And free time, and the want to write.

I simply let go of the rope, I could not hold on anymore.

I landed on my feet, "thunk, thunk" the pain in my knees astounding.  I sat on the cool earth, opened my eyes and found myself in the hookah lounge, computer in front of me, novel nearly written.

A chat open with a man named Steven, and the wind had all but stopped.

Just when I thought the whole thing was a dream, George came up to check on me with a smile on his face while rolling a cigarette.

Cat came after that, and John (her then boyfriend), and the other hookah bar staff, I had made friends somehow... and a few days later Steven and I went on our first date.

These days, the wind gusts, but doesn't carry me away.  I hold Steven's hand, we shoulder each others burdens.  My friends are in a v shape behind me, always ready to catch me.  They were at the bottom of the ravine the whole time, waiting.  Family, waiting.  

And to the wind, I say thank you for your gifts.

To the abyss, I say thank you for catching my family and friends.

And to the beyond, I thank you for your bliss.