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.

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