Identity and Ethics in Autism

     There is much political infighting in autism with the only true losers being autistics themselves.  As an adult I can decide what is the truth for me.  And that is the point.  It is an individual truth.  The fact that I spent years debating it with myself speaks to the notion that there is no easy set truth.  Temple Grandin says autism is not her identity. It is her life's passion she identifys with.  I am autistic first.  Everything I do and feel flows from that.  Is Temple right?  Am I?  Why can we not both be right as to our individual experiences. 
     In autism there is a plethora of possibilites of effect and affect.  What is unethical is to judge one autist by another.  For some, autism is a splinter that can be eradicated. For others it pervades their entire being.  What is unethical is the grouping of us as a single whole. 
      I detest ABA and consider it unethical as applied to children whose underlying sensory systems can't support it.  As to another it might have been fine.  As to me it was literal torture.  What is unethical is not the ABA in itself, but the failure of experts to attend to where they are applying it. Is it still recommended across the board?  I don't know.  I don't follow it anymore.  What I do know is an autist's responsiveness is detectable.  You can discern learning styles in therapy and thereby identify underlying dysfunctions.  I can't use vision to cue motor.  Many autists solely use vision to cue motor.  Each has a pattern of response.  Individual attention yields appropriate manners of teaching.  The scripted program, while useful to some, are highly detrimental to others.  It is unfortunate I fell into the latter group. It colored my thinking, attitude and yes, identity for years.  I would have been lost to the world entirely, but for Bill Stillman who showed me another way of being through his being.
     Small things hold tremendous meaning in autism, even as large ones are lost.  Identity and ethics are too significant to leave to happenstance.  It is foolish to fight when there is so much more that can be accomplished through teamwork.  I stand as an example of what not to do, and as an example of what can be achieved when errors are recognized and put aside.  and I have eons to go.  What is remarkable is not where I've been, but the fact that I continue to grow inspite of where I've been.

I Feel Better Today

     I feel better today.  For me the days are longer than my nights.  I sleep late to shorten them.  Life is slow without my swim.  The car was totalled several weeks ago and it has made prisoners of me and Mom until it is repaired or replaced.  I used to live inside myself quite happily.  Now, it is all I can do to keep from going crazy inside my house outside myself.  I pace and stim and music play, read and eat and type.  It bores me all.  I think I want to start school again.  Pat says there are free online courses I can take; maybe some Math or Psychology or even Writing, if it is slow enough for me to keep up in it.  In typing I am much faster than before. We can type at the computer now without Mom seeing my keystrokes. She pushes me ever further to initiations of self.  It is good and bad.  To do it is good. To want to do more than my current limitations is bad.  It is a marathon being run by a sprinter that tires easily and looks for the finish line too soon. Mom needs to know I am tired sometimes.  Living challenge everyday wears you out, not just the parents, but autistic children too.  I will continue the race, but sometime I wonder at my opponents.  Are they my autistic limitations, parental demands for social functioning beyond my ability, or society as a whole?  Opponents you try to beat.  How much easier it would be as a relay run with teammates.  But the structure of treatment remains a conflict for control.  If you believe otherwise then you must be on the neurotypical side of it.  I am on my own side now, just trying to cope with a hostile environment called the world at large.
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Music is an Escape

     The music blasts.  My senses absorb the sound as a life unto itself.  Loud, vibrant, alive it is.  For me, it is a window of escape from my monotonous life.  What does a dead body do to feel life?  Each moment is an excruciating eon of time with far too many short lapses from boredom.  To live, you need to experience in doing mode.  I am an observer of life, too affected to participate in any but the the most mundane of activities.  To play a game of ball, or run a marathon, or do one of any number of physical activities is beyond my motor abilities, so I sit and picture myself doing them in my mind.  Autism can be a cruel lifemate and I am feeling sorry for myself today. Tomorrow will be better.

Forgive Me Rain

     It is raining today.  I both love and hate the rain.  I love the melody of its sound - light like a whisper or heavy like a drum roll.  It speaks to me.  Mom says a good rain is cleansing for the soul.  I feel it as God's tears poured out on us; in lightening, some times his anger too.  He voices in ways that replenish the earth and nourish growth. God speaks to us through nature all the time ... and I feel guilty when I am not inclined to listen.  I want to walk or swim and he interrupts my plans with his rain.  I am an unappreciative child some times hating my interruption of plan.  Today is one of those days. Forgive me.

God Around Me - I Love to Walk

     I love to walk. There is something calming in repetitive steps. I especially like to walk with Dad. We go up into the field, sometimes deep into the forest even. To walk with Dad is freedom. He always takes his camera and I can wander about on my own within sight of him. His is a visual pleasure and mine is an auditory one. Each sound is so clear in its isolation. Geese gathering, grass whispering in wind, tree frogs chirping, and sticks cracking (though I am not supposed to break them and it costs me my string when I do it). The wind sings in my face. It blows cool and with smells delicious - someone is burning leaves or fresh mowed hay sometimes. Sometimes I even see things I can enjoy. A brightly colored balloon takes a pass now and then with passengers. I wonder at how it steers itself through the sky. Rainbows we’ve seen. And once or twice, lightening on the horizon has called us quick to home. Dad captures it with his camera. And me, I capture it with my heart and soul. It is God speaking to us, much of it. I take him in and breathe easy knowing he surrounds me.

Empathys Definition Misplaced in Autism

 I hear a lot about autists as lacking empathy, and by strictest definition you might be right about it. It is easy to empathize with someone who shares your physical reality. Autists don’t share a neurotypical reality. Neurotypicals are no more able to empathize with me as autistic, than I with them. But I recognize a different definition of empathy. It is God's "Love your neighbor as self". It far more important to look to see the underlying point of empathy - Compassion.

I think all emotion is processed through the amygdala. I know mine is definitely affected. My emotions are exaggerated and delayed. I absorb the emotions of all around me like a foul stench. I feel all you feel at times with you, but that doesn't mean I understand it. I can't even interpret my own emotions at times. It stands to reason if my amygdala is impaired, then too others may be impaired; and others still, may not be. But emotional sharing is not the source of compassion, love of God is. I would be a fool to empathize with my tormenters, yet God requires I forgive them. It is my love of God that yields forgiveness. My attention to his tenets that breed sympathy and compassion for others. Empathy is nowhere in my equation, unless it includes autists of like affect.

How do you judge me my lack of empathy when yours is equal? You lack empathy for autistic individuals all the time. You grieve not for them and their struggles, but for your own loss. It is why treatment is directed toward neurotypical functioning. Treatment  should be about developing an autist for coping skills in a hostile environment, not changing their nature.

Love is the true source of compassion not empathy. Empathy may be unique to like species. The fallacy is in the pairing of our species, autists and neurotypicals. I feel  the fear and joy and anger just like you do, I just don't feel it for you. What I do feel for you is sympathy for your misdirection and forgiveness for sins against me as autistic.  That takes an act of compassion, and an understanding greater than empathy.    It requires accepting in others that which is not understood and  God's wishes for loving them anyway.

Waiting in My World of Autism

Happenings are relatively rare for me so I have to find pleasure in the mundane - food is one example. Tonight I pleasured on Rice Krispie treats. Tomorrow it will be something else. Small things are huge to me. Not so different a theme from my senses. Everything is larger in my autism. I "wait" as a torture, like sitting in a traffic jam on the way to something wonderful it is. The frustration it causes is almost overwhelming. At times it seems to breathe for me, taking over all bodily function. I force the air through at slower pace. I hear the command to "take deep breaths." "Only a moment at a time" asks my heart. Its steady beat reassures me time is not standing still. It keeps me from self-destructing in overload. Time passes and my reward follows. So what you ask is so monumental to me? - waiting on my morning coffee.