Friday, October 26, 2012

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.

Thursday, October 25, 2012

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.

Wednesday, October 24, 2012

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.

Monday, October 22, 2012

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.

Friday, October 19, 2012

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.

Thursday, October 18, 2012

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.

Wednesday, October 17, 2012

One Autistic Experience - Life on the Other Side of Typical

Ok, here we go again. Mom is pushing the independence again and I might as well make it productive. Quiet I have been yet I am thought filled still. To "say it because you feel it" I don't always understand or agree with. Sometimes there is far too much voice, far too little listening in the world. To simply ramble seems pointless, yet we seem to connect through the ramblings of others sometimes. Blogs are ramblings at their best... and sometimes worst. To see the self appointed experts sometimes angers me. Living it and living with someone who lives it are two different things. Each has a voice unique, but when the later tries to speak for the former untruths abound. I speak for me, just me. My knowledge is limited to this body alone. If anyone tells you a different story they are selling you a lie. Parents need to learn their child not someone else's. I speak for me alone as one autistic experience - not yours. Life on the other side of typical has its moments good and bad. "One at a time" seems the order of my life; one sense, one movement, one thought held tightly against a background of chaos. We strive for meaning in our lives. Nowhere is that more true than autism. All of the over selections you speak of and teach to, all of the stims and perseverations we engage in, seek to put meaning to our lives. I am an autist. I have learned this word is a meaning unto itself. But I am also an individual and it is our individuality which holds the key to our connectedness. This is true for the entire spectrum of humanity. Our needs and strengths entwine us one with another. We are each teacher and pupil both. Nowhere is this more questionable than raw autism. You need look for your lesson to see the true spirit of the individual before you. Is it unconditional love, acceptance, patience, perseverance, or just understanding God's plan is not your own? Each of us, all of us, has a purpose. It is God given and it is unique just like their autism, just like your neurotypicalism. Typical is a facade. I am not typical. Neither are you.

Tuesday, October 16, 2012

A Glimpse of Normality Today

A small pleasure I had today in watching my speech teacher watch me succeed. What is so interesting is not a matter of what I succeeded at but the fact that I registered us both at the same time. Several years ago I took an Interpersonal Communications course all about interactive communication. The only problem was it did not reflect my communication apparatus. I am single modal on input and output. To attend to you is to lose myself as a feedback. But today I saw us both simultaneously. I have never experienced that before. It scared me at first. Mom kept asking "what is wrong". Then it heightened me to overload, but it did not extinguish the experience. It is a new experience I hope repeats. It is another breakthrough for me I think. Teaching me would be so much easier to like. I love glimpses of your existence.

Monday, October 15, 2012

My Personhood Survives

Thank you for comments reminding me that a blog is not an abyss. I once thought to make a difference with my voice, but it is not a matter of always the speaking, but sometimes the listening that is the true key to successful communication. It is disheartening to find and fight for a voice only to have it ignored or discounted as false by the very people you need to service you. I would have given up the effort if not for my mom's insistence that I try and try again to assert myself in independence. Sometimes what is in your best interest can be painful. Like surgery it is to dissect and accommodate all the hurdles of movement for me. Most recently I am learning to use two sides in opposition. The key is often not to think on it. Instead I picture the end result. I am learning to do what you do in mass. Questions I have for all of you. Do you just see it - the end act? You act so quickly the planned actions I must do. To move my body to a sculpted form I think it through now, the contortions, like moving a mannequin in my mind it is. Then I put the end equation in my locked memory. Lots and lots of movement entries there are. I learn them all. To watch someone do it is not to form it. I make them puppets in my mind, and then I make me a puppet. I am puppet and puppet master. I am not myself, but I am still the master of my movement. That is the most important thing - to not be dependent on other's movement to initiate my own. I am my own person. One way or other I will do it.

Tuesday, October 9, 2012

I Am Absent With A Reason

For me, the written word is just a lot of hearing myself speak. On one level, it is a release. On another, it angers those who do not believe appearances alone speak an untruth at times. It is ironic that the easier it becomes for me to type is also the easier it becomes not to. My oral words will never meet my eloquence in typing. The words do not flow with the same ease, but they are undeniably me... and sometimes, to ask in voice for a cup of coffee is enough.