The Search For Selfhood Is a Thirst Quenched By Water

I am going to incite a riot in my body. No longer am I simply content to observe the world pass me by. So much of my life has been observing others in doing things – to play, to work, to just move as a fluid action. I long for it. My body screams, but now I am screaming back at it. I am initiating my own movements; sometimes right, sometimes wrong, but always me now. It starts with an imitation of body, so difficult for me who cannot feel myself in space all the time. But I am learning to practice after swim when my body is aware, or at night, to feel myself from the head down. I materialize in the quiet darkness of my room. I move in sync, each limb as an offshoot. To those for whom awareness is natural, this may not make sense, but to feel yourself as anchored in place is everything secure and safe. My life is topsy turvy in a literal sense. It must be what those with vertigo feel. I understand the symptoms of upside up is down. I move to an outside point of reference not my own self. It is hard work to remember the way to positions, to tell myself you are moving right or wrong. It is like driving an object or a car; my mind is the driver and my body the car, but sometimes it is more a tractor trailer in back up, where left is right and right is left. I live to swim now, where my body is there and is my own. Slowly, I am learning to coordinate my top and bottom. I move in sync in rare occasion, but it is a presence that was previously absent. I love my bathing suit as a clothing. It clings like water to my bottom; its weight is an anchor for me to feel my center. My head is air and floats my body. Mom calls me a frog with its nose out of water. I pretend I am a fish and dive under the water only to end up doing a roll over myself. It is scary, but exhilarating too, to be able to go down then up into air again. I am lucky each time in finding my way up. My butt rises and I know to turn now in that direction. Why do I tell you all this? For me, the bodiless autist, all the therapy ABA in the world could not do for me what a few hours in the pool do. I swim and it teaches me what ABA therapy could not, how to find my “self” in a confusing world; the real lesson we autists need to learn, selfhood along side mankind.

Message for davidsonl192248

If you comment to this post and include your contact information Mike will get in touch with you. Please keep in mind though that two different people may very well engage in the same stim for different reason. 

Accepting Autism

It is autism acceptance month.  For who I ask?  Who needs the message more than us ourselves.  As a child, I thought my autism made me bad.  It is what I heard, what I experienced through others and even myself.  My body was derelict of duty, betraying me always.  How do you make peace with yourself?

People judge; it is the way of it.  But my harshest critic was me.  Life with autism is no picnic, but we need to be kind to ourselves.   Accepting autism means accepting ourselves. Acceptance starts with ourselves.

Today Typing Saved My String

     My string is being held captive by my Mom, her idea of punishment for my snapping her broom.  It was an impulsive action on my part, one I have repeated to her horror and my shame many times.  Let me explain.  Some things call out to be done.  Obsession sets in until the deed is complete.  Snapping is one of them; sticks, brooms, anything that makes a snapping sound.  It is a horrible choice  - to snap or be hounded in the thought of it. My punishment I deserve. I was warned. But it does to me nothing positive in solving my dilemma. Only removing the item from sight helps.  Each time I try to hide it my snap reflex beats me.  Can you help with ideas?  Mom says we will practice putting the broom away - but first she'll need to buy a new broom.  I am sorry for its loss, but more sorry for my loss of string.  Good thing Mom understood and let me have my string back when I type and explain it.  Typing has its uses; to tell is one of them.  To tell is a start to understanding.

Where Do I Even Start

The song "Where Do I Even Start" is playing as I write this. It reflects my thoughts. So many voices now Mom describes in Autism; some in conflict, many in unison. I wonder what I have to add to the discussion. Does my uniqueness as an Autist add anything of value for others' experience? For me autism is who I am, my life. I cannot imagine a life in freedom of movement and feeling. I harness my emotions, trip over my thoughts in motion, endless monitoring and planning to do the simplest of things. Yet I do not hate my autism any more than I champion it. It simply "is what it is" as my Mom so often says. I don't think I can make it into something political like so many others do. Does that make me a traitor to others like wise affected? I hope not. My hope is that everyone see the person beneath for their soul’s mind. It is a hope for all not just the autistic. Reading my heart is far more important than my outward appearance. I send you wishes for peace today. For today it is enough.

Self Injurious Behavior

     Self Injurious behavior, "Self Is Bad", I call it.  I know I'm not supposed to do it.  Sometimes the mind and body are a disconnect.It is not something you do to hurt yourself.  Sometimes it does not hurt at all in the physical sense.  Others, it is a conflicting pain you seek to override something else.  Sometimes it is a pressure valve release.  I smack my ear when overwhelmed with frustration.  Mom says  I am her body and I must not hurt it.  Sometimes thinking of myself as belonging to her helps me to approach my body with greater respect.  I know that may not make a lot of sense, but it is true.  I take me for granted  and I get frustrated and blame my body as if it is not even me sometimes. You can't understand the disconnect between mind and body unless you live it.  My life is a process of self internal communication, like two people talking and not always agreeing on what to do and how to do it.  Only siamese twins have a harder time of it.  To  you it is unthinkable.  To hurt your body is to hurt your mind.  For me, it is like sibling wars.  Sometimes the body beats the mind and the mind fights back. Keeping peace is the goal.  Learning to recognize the interconnection of one as hurting the other is a process, one I am still working on.  Forcing the two to work together on mutual frustration is one thing that seems to help.  I think to breath.  I am doing it now.

It Takes Courage. Thank You

     Today I have something to say.  " It Takes Courage."  That is the whole of it; courage for those less obviously autistic to speak out and acknowledge their autism. They could just as easily abandon the label, exchange it for one of "eccentricity", but they do not.  In being true to themself, they now face criticism for advocating for their rights, as if speaking out is a sin against me a lower spectrum autist.  Well I want to say Thank You.  I applaud your efforts in standing up, not just for yourself, but for me.

Music Takes Me to the Other Side of Physical

     Asking questions I am very good at. Mom and I take turns sometimes.  I do a lot of thinking in my autism.  For me, I just want to know what it is like on the other side of physical.  It looks so easy in observing what is a huge process for me.  Understanding sometimes helps.  For me, movement is surgery.  I have to systematically prepare for everything not reflex.  It is why I love and hate impulse.  Impulse is a shortcut to action, a nonthought way of doing that gets something; urges that are strong enough to bypass my need to think the movement through.  My music is like that too.  It takes the commands to another level - song; and sometimes the song replaces the command in triggering movement.  I am much more fluid with music as a background.  I love my radio as my most favorite possession after my string.  Relaxing I can do with it.  Do you know what that is to an Autist? - Everything. 

More of the Same Old Arguments

     Mom cut my board in half. She said she did it to help teach me two-handedness. It was horrible; two boards, not one, with no carryover for my eye movement, like playing two songs at once and not being able to follow one for listening to the other it was. It made it easy to use my other hand though, until I needed a letter on the other missing half of board.
     Do you move as a single motion? My movement is tiny steps put together. Hiccup my motion and you destroy it. I am a giant stop sign at times. I lose my place in the action and cannot even start again because I'm left in a different position from where I was at start. This is my motor initiating problem at play. The Board is another problem I have, not seeing parts within a whole. Mom should have known better, but it might work for someone else without my issue there.
     My issues are not another's, I know. Autism is so individual oriented, issues and solutions both. I often wonder at why they are so intent on recognizing us as a group experience. Autism is as diverse as neurotypicalism but no one calls NT a "spectrum".  
     I wonder too if my being on spectrum takes away from others more able. I am who they aim to eradicate with a cure. But how would you know the difference between annihilating me and them. My life is of little use by society's standards, but a lesser version may yield you a scientific genius, math or music savant. The world might truly lose without these small gifteds. It is in the small extremes that radical work as gains are sometimes realized; to think or do the unthinkable, achieving the previously thought impossible. It takes at least the dedication of the obsession routinely practiced in autism to focus on what others find the absurd, to realize the unachievable goal. NTs make fun when self advocates compare themselves to the Einsteins of the world.  I am surprised by this. I guess I am worth more than I think.  I am at least in good company in the process of annihilation. 
     Abortions of good NT's happen every day.  The disabled have no complaints.  We are not yet the automatically acceptable nonpersons NTs are at prebirth.  We carry a higher conscience factor.  As absurd as it sounds I think it is true. It says a lot about NTs.  You might want to think about that.

Snow and Life Both Deceptive

     Snow I love and hate. It is so beautifully deceptive. It covers the ugly barrenness with a blanket of white, looks so perfectly pure in its never touched state. But appearances can be deceiving. To walk in snow requires caution for slippage. It is slippery and unstable as a foothold.

     My life is ugly like the barren trees sometimes, but it is still stable underfoot in soul. A beautiful life is sometimes not all it seems either, whether it is filled with money and things or just everyday busyness it may still be a slippery and unstable existence. Sometimes I want to trade my life for another, but then I see the snow and think about it, and I decide my life is not so bad after all. I have God and family who love me.... and right now, I also have an expectation of coffee. Life always looks better with a cup of coffee in hand.

Christmas - A Valuable Reason to Work at It

     Old events remembered often bring up negative emotions for me, so I am going to write about only good thoughts today.

     Christmas is coming.  It is a good thing in our house, but overloading too.  This year I hear my Mom say "fifty family".  They all come for Christmas Eve dinner.  A special meal and prayer it is to celebrate respectfully the birth of Christ; and too, to remember our loved ones who are no longer this side with us. I love the occasion as a gathering of love and traditions old, but it is not an easy day for me - sights and sounds abound, touching all about, intentional and nonintentional, movement required to join and avoid others actions, waiting incessant, emotions to be absorbed and processed, communications to be translated, smells to be endured.  It is not just a nice gathering for me. It is exhausting work, only made valuable by the reason for the day.

Christ camer into the world so simply.  Let the meaning of that speak for itself.

Acceptance Is Never Too Late

     Today I asked my Mom if I should question her judgment in telling me I am "magnificent."  It has not always been her message.  I guess autism is a process of growth for both parent and child.  Just as I had to grow into my personhood, she had to grow into her parenthood. 

     The child who starts with acceptance is extremely lucky.  More often I think it starts with parents like mine.  I know they love me now, but they were more the enemy back then.  I only wanted to escape the onslaught of the world back then, too much it was.  If I had been surrounded by peace instead of turmoil the world may not have been such a scary place for me. 

     My Mom is a "do it" person.  Patience she needs to work on.  In some ways this was good.  I could do in motor for her what I could not do for myself or others.  It caused her to believe in me when I did not.  It also caused me to hate her. 

     Anger was my motivation for a long time; to not become a puppet.  I understand compliance as important, but it also teaches lessons better left unlearned.  It makes you afraid to initiate beyond what is asked of you.  Fear of failure is a compliance creation in part; to sit and be released on positive responses only is what does it.  Lessons in autism frequently transfer by association. Positive reinforcement as a word but not practice, negative reinforcement that only serves to heighten an anxiety that already screams for relief - this was my invitation to the world.  

Take a child whose senses have already deserted them and expect them to learn in this environment; this is your ABA, the real lessons you are sometimes oblivious to.  It is why I say learn your child. To pay attention to their discomfiture is a gift you give yourself.  It saves them and you from having to walk each alone through the process of growth.  A path shared is a positive journey for both parent and child. 

Mom and I crossed paths more often than we shared them.  We became a team much later, but the damage remains in emotional memory response for me.  To write sometimes revisits it. 

Knowing I am "magnificent"  in her eyes now, not because of anything of I've done, but simply because I am helps a lot.  Acceptance is important. It can never come too late.  

A Person, Not a Cause

     A ribbon that is a puzzle -  Is that what I am in your language of symbolism?   Who makes this stuff up?  A ribbon signals a cause.   A puzzle you put together to make a whole picture.  Is that what I am to you, something to be pieced together to completion like a puzzle?  Whatever the intent, It reflects your approach.

Questioning, a question mark,  for autism I would understand, but a puzzle and a cause?  Not even a person do they use in the symbols.   Our autism is the only focus, not the child who deals with it.  Autism should not rule personhood nor be an excuse for you to ignore it. We are children first.  The ethics of that gets lost in the ribbon of your cause.  I am not a puzzle to be pieced together. I am blood and breath, a living, breathing organism, not a broken object to be fixed.

      Make sense of the world for me, that is what I needed.  Treat me as valuable and loved.  Touch me with respect for whatever are my issues. Know my behaviors have purpose and carry meaning. Recognize my intelligence as not reflective in my sensory dysfunction.  

      Ask yourself for whom you grieve.  It will tell you for whom you act in treatment.  Help me, don’t seek to eradicate my underlying nature.  There is value in everything in God’s creation, even autism.  Don’t start out in a panic.  It is a journey you embark on.  A puzzle brick road that takes you home to a person  I see as a possible symbol, but then I love Bill, so a puzzle brick road speaks of love to me .

The symbol needs to be redesigned, preferably by an autistic individual as artist .  Our identity should not be reduced to a cause, especially one that denies our underlying personhood in its symbols.

Making Your Child a Partner in Autism

Understanding sensory processing makes for an explanation of my autism. Senses translate the world. Injured senses misinform. My response is what you call autism.

Senses work both alone and together. Multiply the senses by their parts and it equals a plethora of possibilities in autism. Stims often reflect the autist's sensory reality as different. Learn what we experience as a way to reach us. Understanding puts us together at a start point.

Forgive me but I hate all knowing experts who know nothing of my processing. It is irresponsible treatment to go at autism blindly. Like a sloppy effort it yields a sloppy result, a damaging outcome. Children are turned off and away from the world you seek to have them understand and join. Lessons unintended are taught – things like failure, confusion and inconsistency. The world is capricious, unyielding, and hostile to the children of autism. You can be our guiding light or persecutor depending on how you approach us. Only taking time to learn about us will forever save a multitude of sins against us. No one knows this better than I.  I am a child of sensory dysfunction, the "severest of the severe" Mom says. The good news is growth is always possible. Lapses show themselves. Corrections and compensations can be developed. Much of what you see in our autism is just that, our own systems attempting to adapt for what’s missing. But false premises yield poor adaptations – like my walking on tip toe to avoid being swallowed by the earth.  Only it is my life’s work to adapt for what my body fails to do. But lesser impairments may be addressable in a shorter time span for others.

But this writing is not supposed to be about sensory dysfunction. It is actually about common sense in approaching treatment. We are not an experiment to be tried. My humanity is one thing that should be treated always as sacred. Learning that encroaches on it is ill conceived. Learn to teach. Teach to my strengths. Use my strengths to teach to my deficits. It is a win win,not a win lose, you seek to succeed.

Only too know my intelligence can shine through one time and become lost in sensory confusion another. Cause and effect learning requires consistency of response. The light I know will always respond consistently to on and off. Not so my sensory learning. This is obvious to me now; not so when I started. Navigating the waters of sensory dysfunction eases our learning and lives. Autism is not about intelligence. It is about performing in an inebriated state most of the time, making sense of what is nonsense to us,  trying to see through muddy water to find the fish hiding behind the rock. It is all these things at different times. Your understanding does not make clear the water for us, but it offers bait for the fish.

A Letter to Parents from an Autistic Child

    Today you learned your child is autistic.  He or she is the same child you loved yesterday, the same child you will love tomorrow.  Remember that in all things autism.  Be careful the autism does not become your identitiy.  Only your child can decide if it is their identity, whether it is who they are.  Your acceptance is everything.
     Acceptance is not idle.  It strives to meet potential without equating potential to a modification of soul.  To cope, adapt and circumvent, is different than to change underlying nature.  To have your child fake response and personhood is a fate worse than autism.  It hides them from both others and themself.  Becoming neurotypical is a common goal for parents of aspies and autistics.  It is by far the most damaging thing you can do to us. 
     I understand your reluctance to embrace autism, but don't turn it into a reluctance to embrace your child.  Acceptance is the most important component of treatment.
     I live and love even as an autist.

My Frustration Overwhelms at Times

     I am at a no help needed point in my real skills at typing but my frustration overwhelms. Mom says it is a required skill as credibility goes but it angers me to force myself to do it. She thinks she forces a good thing; that teaching independence in this yields far more than independent typing and communication. It may yield initiation in other areas of motor, the activities of life. She may be right in it, but it makes the work no easier to know it. My breaks are back to words apart. I break myself on stupid mistakes so Mom knows to backspace. She calls my letters as they appear for her on screen – to late, because I already know my mistakes. I have to fight the urge to lash out at me for my stupid body. “No cause for frustration," she says. It is my overload I feel. Just so much at once to move it is. It is my life I fight for I know, but like rehab it is, coming back from a stroke; you do not see the ends, just the struggle at times. I breathe deeply and start again.


Message from Mom:

For Carol, Tina or any other OT that happens by,

I need to improve the stabilization in Mike's shoulders and typing arm. Would repetitions lifting a light weight help?  Any suggestions you have would be more than appreciated. Feel free to submit in comments. Thanks.

Approaching Treatments in Autism

     Satisfaction takes years to achieve in autism.  It is not an easy fix.  It should not be a fix at all but a growth, an integration of two worlds, autism and neurotypicism.  Man is not man, just as Neanderthal is not Cromagnum.  Altered brains equal altered minds, altered behaviors.  Whether autism is seen as evolution one way or a defect the other is not important. What is important is recognizing the difference in structuring your approach and "treatment".  To approach autism from a neurotypical mind set automatically yields failure.  You need only read this blog or Behavior Policing's Effect on Autistic Children to know our minds take in information differently.  To see it differently is to come to altered and sometimes misguided conclusions.  I say sometimes, because sometimes too I believe our conclusions are very right.  Instead of teaching us to understand neurotypical thinking, you seek to make us neurotypical in our own thinking.  It is not a matter of symantics.  The first I find highly effective, very helpful to my functioning; the second, disparages me mind, body and soul. 
      You love your pets, but would not expect your cat to act like your dog.  As autists we have different natures, but we can still learn to live companionably.  My mother is my primary teacher.  It took her years to learn the difference. She is not alone in this sin.  That is the greatest danger of it.  If I could impart one valuable lesson to those starting the autism journey it would be this -  See the world through your child's eyes before judging behavior as bad or good. Teach lessons in understanding not punishment.  And love, truly love, your child just as they are.  It is counterintuitive perhaps, but it is the surest path to developing them to be all they can be.

Orientation Through a Card Game.

I am happy. Today I learn my hands through solitaire. Orienting is a huge problem for me. To turn a card and place it is like surgery. I remember Carol tried to teach me the skill with weighted cards. It was a brilliant idea, but my system was not ready to do it. Well today I succeeded at it. Readiness is sometimes more important than your programs of learning. I am ready for many pieces of learning. Swim is the answer to my indirectly learning what I could not do directly. Today I was ready for this.

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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