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.