Sunday, May 31, 2009

Ask Me A Question

The thought of someone seeing my words and wanting to read more is so gratifying. Please feel free to tell me how my experience can help. I have lots of tricks. Ask me a Question. If I can answer I will, but know it is just one possible answer not the answer. I learn my system not others.


A Way To Go & Sheer Heaven

A Way To Go

Ask me how I am doing as an autist in this world and I will say “very well for where I started.” Most like me never make it into the world. Their physical limitations keep them locked in mind. How strange it is people judge a persons mentality based upon physical systems which may or may not operate properly and which have nothing to do with mentality.

Being locked in mind is both a blessing and a curse. It protects equally from what it denies. For those like me entering the world is like choosing suicide over and over again. Outside becomes a formless existence. To be requires a sense of form. Form is purely physical. My form is intermittent at best now. My mind is my anchor. It holds me to the world based on the idea of shedding light and understanding, of bringing to form those who are stuck in mind, of giving them form in other people’s minds. They are real then, outside themselves in another way. To see them as a child will be to rescue them, not through the torture of ABA, but through the therapies that may actually help to free their physical bodies. Aqua therapy is what delivered me from my physical abyss. It gave form where there previously was none. It soothed me into being, enhanced my sense of self. At first it overwhelmed me to feel my existence. Then it frightened me to lose the feeling. It evaporated with the water. I would overload at the thought of leaving the pool; into giddiness I would descend, back into mind so as not to feel the loss. Over time I learned to face the loss. Over time I even felt my body stay a bit. Over time my body started to turn itself on without the water. It is where I am now. So I am very well from where I started even if I have a way to go.

Sheer Heaven (Article for the Univ of Scranton Lahey Newspaper)

The University has a program that lets me take swimming as occupational therapy. I’d like to let you know what that means to me. I am very smart, but you would not know to look at me. My physical appearance is normal, but I have a lot of behaviors that make me appear retarded. Motor movement issues overwhelm my being. To move is to look all spastic and impulsive. I can not kick and move my arms at the same time in the pool. I can not swim as a normal stroke yet. My limbs can’t seem to coordinate and I can not keep track of my arms and legs at the same time.

It was very scary in water at first. I have trouble knowing “where I am in space” they call it. In the water I didn’t know which way was up when under it. Nothing is more frightening than swimming in the wrong direction to air. But amazing things are happening. I am learning to feel my body as itself in water. It is a wonderful feeling to finally know yourself as a separate being. It is a wonderful learning experience. It yields major gains in movement. To move as an entity alone is a blessing. To move is a major goal for me – a major, potentially life changing goal for me. You, as normal, do not appreciate what an Autist's body can not do. When young, I could not move sometimes. “Frozen in space” is what I call it. I could not tell where I was or where I was going. Just try to touch your nose with no idea of where your face is. Try to move an object with no idea what direction you are moving in. It makes you look and feel stupid. Swimming is far more than just swimming for me. It lets me develop my motor awareness and skills in a very fun way.

My whole childhood has been about working to overcome my issues. There has been precious little fun in it. To get so valuable a lesson in a fun package is heaven itself for me. That is what swimming is – sheer heaven.

Thursday, May 28, 2009

What Do You Want to Teach?

It is the nature of autism, to experience too much and too little. My autism is example of just one genre. Ask me to describe my experience and you are asking for a very long story. Autism is not static. It changes over time. We change and grow just as a normal person does. Where I started is not where I am now. I began with nothing. I presently have my hearing, some sight, and some tactile to work with. Developing my sense of body awareness is where all my effort is currently focused.

I learn via a different process. To learn you have to experience meaningful input. To experience meaningful input you have to isolate. Putting the thing you want us to learn alone is what translates the information correctly. Known information can be used to train sensory processing. Good senses can be used to teach new information. In the end you teach us how to learn by using and expanding the systems we have.

My mom frequently talks about isolating variables. Each thing that is to be learned can be broken down into its parts, both skill and sensory. My part description would surpass the normal person. Things your body just does automatically, mine doesn't. Movement is a good example. To move you need to first reference your starting point. You need to be able to continue referencing yourself in relation to other objects throughout the movement. You need to be able to start and stop the movement. You need to be able to plan and sequence the steps in the movement. Reading this, I'm amazed I learned to move at all. I have no point of reference as a start point; my body is an extention of whatever I touch. To move becomes a complicated explanation of gauging distance and end points, how far to this or that object. Often I move by seeking to go past an object, and then reach it as a stop. When little, I couldn't stop. Once I was in motion I was gone. You had to command me to do another motor activity like "sit" or “turn around” to get me to stop. To just "stop", I couldn't do it. How many times did I count out objects past the desired number simply because I couldn't stop the motion. Sometimes it wasn't the stopping but starting that was the problem. I call it "frozen in space". To want something and not be able to move, it is a horrible thing.

My stim saved me. It kept movement manageable. It grounded me in its own way. Our stims have purpose, just not to you. You need to let us use them at least until another coping mechanism can be developed. You need to understand that I am not you. My body behaves differently. To try to second guess and judge the value of my stim adaptations is wrong. Instead you should focus on alleviating the need for them; use their presence as a measure of your success or failure. To simply demand I stop doing it whatever it is, only forces me to create a new adaptation, a new stim, to accommodate for whatever was missing in the first place.

It may even work against you relative to your goal. For example, to force me to "look" at you when looking at you makes it impossible for me to process something else impedes my learning. How many hours have been wasted on such nonsense? What does it matter if I look at you if it means I can’t understand you? "Look at me" is one of the stupidest things anyone ever tried to teach me. Relative to our systems there are multiple good reasons for not looking and more likely what you will teach us is our first lesson in deception. You need only vistit once and look up eye contact to know we are looking anywhere but your eyes. So what do you want to teach? It is your first question. It is a big question.

Wednesday, May 27, 2009

A Thank You to Lisa

Seeing my words in print, it is a wonderful justice. Remembering what was done to me makes me wish things were different. The distance of time doesn't make it any easier. Speaking to it is in some ways more punishing to me. It revisits all of the emotion of it. My writing is not without cost. Deciding to write is hard. Where to begin?

I am not the person I was when this all started. Love is what changed me--love of self. To be has always been my goal. People assume personhood is automatic. It is not. Personhood is derived from interaction. In my autistic home I was a person because there I could interact in prayer with God.

Outside my autistc home people were foreign objects to me not interactions. Lisa Cooper was my first interaction, my first human exchange. We played the only play for me at the time. Giggles for tickles is what I called it. I would assume the giggle position and she would tickle me. Then I would let her in and she would giggle with me. Then I would brace for it again. Lisa I let touch me. Everyone else I labeled as an object when touching me. Even my parents got stiff hugs. Lisa I let hug me as a person. I would wiggle into her arms. She loved me I know. She was my first real friend and love.

Others have helped me too, but Lisa and Stacey White are the only two that did it from a place of love. It was true of Becky too for a time, but it changed for her. For someone who is lacking, understanding others motivations I get an A in. My having an ear to others thoughts makes it easy, and painful too. My mom never lies in thought to me. She sometimes gets real angry with me. That I am autistic is not an excuse for bad behavior with my parents. I have to learn they say. Only learn equates to being able to do something not just understand it. One is not the same as the other. I have already said that doing is hard for me. Impulses intervene -- to smell, to touch, to break. My impulses get me in trouble all the time. My impulses rule me sometimes,like a need they are.

Lisa realized what my system was doing. She never blamed me, just tried to help me. She knew giddy meant I was overloaded. She was the only person I would stay in the world for. When she did work, it was fun as work. To stay in the world was a big thing for me then. With Lisa I would fight to stay. Anyone else, I would hide from them in my world. With her I would look right in her eyes. Anyone else, I looked through and showed lifeless eyes. She only saw my eyes, but she knew I was there with her. It is the saddest I have ever been to lose her.

You think you can come and go from our lives without a thought to its affect on us. Respect does not come easily for the autist. It is derived from trust. Trust is earned not readily offered. When they took Lisa away my heart was broken. Workers always coming and going caused me to trust no one. Only Linda stayed in those first few years of school. You can't tell that at outset, who will stay and who will go. It took a long time before I trusted Linda. I fought a lot as a child. Everyone was my enemy.

Seeing is not just a matter of visual stimulation. Internal sight, insight, involves processing as well. It is sad to say but we are equally dependent on our bodies to evaluate it. It is a sense all its own. Where you see yourself constantly being physically abandoned it is difficult to interpret others as trying to help you. When you see yourself, how you are as bad, it becomes a battle against the world rather than to join it. Treatment undertaken from a position of love is the best path to the world. It is Lisa's path and I'm glad I got to walk it for at least a little while. Thank you Lisa.

Tuesday, May 26, 2009

Is Autism Something For Cure?

I belong to a forum* composed mostly of asperger individuals, just individuals is what I’d really like to be able to say because that is the real truth of it, but it is not how society lives. Until you love an autism spectrum individual, I don’t think you can appreciate the value of individualism. I think the aspies get a poor deal of it, being associated with me, a low functioning autist. The curebies direct their beliefs toward me, but those with aspergers do not see the distinction. Their differences sensitive them to the greater question. Division is a slippery slope; once me as severely disabled, why not you as differently abled. What becomes the variation and measure? How much is too much difference? Societal norms dictate the measures used. Hitler created his own societal norm and the masses followed. The curebie mentality is not limited to autism. It is potentially aimed at each of us. Let us cure the world of autists, or gays, or Blacks or Whites for that matter, whoever is the odd man out at the time.

You do it now. Not with a cure, but with an attitude of superiority. Attitude is all it takes to destroy a soul. You can kill something just as easily one way as the other. How many autists have already been robbed of their personhood through therapies designed to teach normalcy. It is genocide already. To teach diversity appreciation places the victim in position of responsibility. I am not sure I like that. It is the responsibility of the non-victims to speak. Where are our families and friends? I think they need to be the ones to speak.


Entry #2.

The issue of cure is a difficult question. The parents, I am sure, would say yes please. It is only natural not to want to see a loved one suffer. I can not blame them for that. Making a good argument for autism is difficult unless you are of my belief that we are all with a purpose beyond ourselves, typical people as well. Even normal is not normal. Each has his own strengths and weaknesses. Nothing is without purpose to my mind, whether it be to develop self or others. Even seeking a cure happens with purpose.

But for those who already exist the question changes. It becomes personal; a question of whether you are worthy just as you are. Political niceties aside, it goes to the heart of humanity. How we care for others is the true measure of self.

Is it all too much to ask that we honor God’s creations just as they are? We test tube this and euthanize that to make God’s of ourselves. It is a farce of hells making. Only God sees all of the connections. Only God knows each of our purposes one to another. I am not God, just a tiny piece of him. You too. We live in a society that kills God everyday in aborting new life, even normal life. Why then should I as an autist expect any better treatment from this society. The issue is not one of cure, but one of humanity. How you view it is most important to you. Your answer and reasoning defines you.

Saturday, May 23, 2009

The Language of Therapy

Therapy is a pathway from our world to the world. People need to understand it is a dangerous hike, one that threatens our sense of personhood. Entering the world
required a death of the physical self for me. Being in the world overloaded my senses to the point that I did not feel myself as a person – physically I had no sense of self. I took a dive into the world only to find I did not exist in it. Mine was a mind only existence. I could not feel to know form. I could not feel to identify self. I was a quadriplegic who moved.

Therapy is designed with movement as response. It is conceived and practiced from the standpoint of normal function. Ours is not normal function. We are dolphins in a gilled world. To treat us as fish denies us the air we need to breath. Like the blind and deaf communication with us requires the use of different language, one that is specific to the individual .

Autism is a communicative sense disorder; not just communication with the outside world, but our bodies as to ourselves. Our senses are what produce our world of meaningful experiences. If you do not see it, you are blind to it. If see or hear it differently, that is your reality. My senses constantly miscommunicate to me. To fail to process, to process too much or too little, to process wrong, it is all communication error.

For me, my physical reality told me I did not exist. For others is may be their emotional reality that differs. For still others their reality may actually surpass yours, via hypersensitivities you do not have. Which senses are involved? How they are distorted – it is an individual thing. Sensory processing dictates a child’s reality. The child’s reality dictates which direction treatment must take, the language you need to use to translate your world to the child.

Too hard you say? It is not too hard. Experts know the functions of the senses. They can read the symptomology of reaction. Just no one has tried to put it all together yet. Instead skills are dissected into task components absent their sensory pieces.

I will give you an example. My eyes can only process the whole, or pieces of the whole at once. Seeing parts within the context of the whole is lost on me. Size is a relative measure. I know big. I know small. But relative size has always escaped me. I am blind to it. Am I stupid for it? I do not think so. To understand something and to do it is often an entirely different thing. I have a damaged body, not a damaged mind. Yet I will test retarded every time. Some times the failure is as much in how we test knowledge as in how we teach it.

If you test for something other than what you want to test for, the test is invalid. Would you give a visual test of size to a blind man? No. Yet I am tested this way all the time.
Similarly, you teach for other than what you want learned all the time. If you looked and tested for what was actually learned, rather than for whether we learned what was wanted, the child’s actual learning process would reveal itself. You could teach a child how he learns; you could teach him how to learn; you could work around his individual sensory deficits so he could learn.

As a child it was known that I had a poor sense of body awareness. Yet no one paid attention to this. I was constantly asked to do what proved an impossibility for me. You could have taught me differently. You could have tested me differently. You did neither. Neither did you try to understand the “why?” of me. Consequently you tortured me with your teaching methods. To not understand my own movement was bad enough. To not understand others made me want to escape the world altogether.

Your teaching games look very different when seen through my eyes. It was not about learning for me.

My experience – “kick chair,” you say. I hear a sound.
“Touch nose,” you say. What? I see a blur of movement.
You move me now to touch my nose. Where is it? I feel the touch, but don’t know where I am being touched.
I can see to find your nose. “No,” you say.
On and on it goes. I start having nightmares of being touched, where I don’t know.

You police me to do and fail again and again. My anxiety is screaming. Each doing asks me to say no to being. Each exercise deadens me more and more to wanting to be part of the world. You bully us into conformance, creating puppets where fragile souls exist.

How do we lose our identity to you? It happens in different ways. We fight our own sensory systems; we give up our right to feel in order to respond to your commands. The rules become our prison – not just our rules, but your rules too. Policing us, you destroy our individuality. Policing us you train helplessness. Our protests go ignored or punished.
To respond becomes a “yes” only exercise, where doing the action asked denies self.

Doing pitted me against the world. I had close calls of subordinating myself, but the anger at the injustice of it always brought me back to fight. Polite teachers were really dictators in disguise. Where I lacked a physical identity, another identity formed – anger and anxiety became my identity and definition of self in the world. It filled the gap, however poorly, until my physical form could be felt, a better identity and purpose could be found.

Even now to think on it floods me with anger. To teach a typical child like this – you would consider it torture or abuse. Am I any less a child? But anger is not the answer. Teaching others awareness is the healing action. Teaching others that autists are people first is the responsible response. It is not the teaching systems that need to be addressed; it is the people operating them. They need to be applied in appropriate cases only. You need to understand why you are applying them and when they fail, why they did not work.

You need
to recognize which teaching system speaks to whom and which doesn’t. TEEACH, a system that employs visual cues as information supplement is of tremendous value to the single modal visual child, but of more limited use to the auditory or tactile learner. My Mom says TEEACH’s greatest value is as an assessment tool. She learned much about how I processed my environment using TEEACH.

The Picture Exchange Communication System (PECS) , which uses pictures and objects in place of words to communicate, is good but often fraught with error in its application. How many stick it on a board and thereby undermine its entire purpose as “initiative” communication? How often is a child’s lack of visual processing misinterpreted as a lack of understanding of communicative intent? I knew to ask, but my vision blinded me to what I was asking for. For others it may be their lack of understanding of symbolism that blinds them. Therapies fail for many different reasons, but the reasons are determinable.

Multiple-cue remediation training helped me to succeed. It developed my sensory processing, taught me to look to the previously ignored piece of information; to attend to multiple things at once. I may be taken by the beauty of the colors – where your focus is on the form. Mom says it is like Escher’s pictures. From Mom I know two pictures exist simultaneously in one, but the ability to distinguish them is still lacking for me. And so conceptualization expands, at least in theory recognition. Where our systems may be limited, our minds are not.

ABA/ Lovaas just provides content for the conceptual autist, but it is sheer torture for the single modal child that I was.

It is not the content but how it is conveyed that forms the problem. Bombardment with meaningless stimuli teaches other lessons best not learned. Anger and anxiety are just two. Robbing a child of their personhood, creating a puppet as replacement for the fragile soul is the worst. How ironic that you do not see the failure within your success. I would far prefer to see brief moments shared than functional absence on the part of a child.

Initiating is difficult for all autists, regardless the underlying reason. It is these failures to initiate that you label as our “disconnectedness”. But to ask us to perform in the absence of soul, makes us no more connected to your world. It actually teaches the alternative of your end goal, where progress leaves our true personhood behind.

Understand, I am not against behavior therapy. You can do behavior therapy with out robbing the child of their soul. It is the difference between communication and control.
Treatment always needs to be aimed at communication and that requires speaking the same language as the child.

Application of treatment without differentiation is unethical. Autists are entitled to respectful teaching. What is respectful is a product of the autist’s limitations of processing, not a teacher’s sense of ethics. Therapy is a pathway from our world to the world, but unless you hike with proper gear there will be casualties.

The Need To Communicate

Polite conversation has no place in autism. It is necessity that causes an autist to speak. I “need” is the operating word. Thoughts are precious, private things; sharing them used to scare me. When you have no control over the outside world, thoughts evolve to a higher significance. They are all you have to define your personhood. I used to think if I shared my thoughts I would lose a part of myself. Not until meeting Bill Stillman did I realize two people could independently share a like opinion.

Students often ask me about my frustration at not speaking. One recent question: What is the one thing you want everyone to know about not being able to communicate what you are feeling? In asking the question it never occurred to the student that I may not need to express myself as they do, most especially with respect to feelings. The question is reflective of their sense of what is important, not my sense of what is important. To communicate takes so much effort for me both physically and emotionally that to share my thoughts and feelings, they are not so important.

I do not have the same connectedness to my emotions that you do. My observation tells me that people most often communicate because of how they are feeling at the time. But, what if your emotions were not tied to your experience? Imagine having senses so delayed that what you feel has no relation to what you are doing presently. What if the intensity/energy of emotion blinded you to its content? What is happy or sad then? My emotions are both delayed and extreme. To experience as I do would you still be so keen to feel it?

So much of what we learn is based upon the emotional feedback we receive. My immediate emotional feedback is useless. When I was little I would often display inappropriate behaviors which were based on responses to things long past in time. Over time I have learned to register feedback via my other senses. Feedback has become about observation of others. I have learned there are people I can trust to respond appropriately in the moment. I used to tell my mom “I can do it as you”. This is what I meant. It is easier this way, but then your action is not wholly your own. Doing things as me takes so much more effort. Feeling in the moment it is not innate to me. To process everything at the same time puts a huge strain on my system. Emotion is the quickest route to overload for me. To practice processing everything at once causes commotion, even anger around me, because it puts me in to a state of overload which others only see as “bad” behavior. I have learned to limit my moments of self and feeling to important things like hugs. Most things I gauge by others. You have to pick your others carefully though or else you end up with a past history like Donna Williams. You must exercise personhood in safe surroundings. Better I choose to limit my experience than to always experience limitedly. It is the contradiction that is autism, to experience so much and so little.

Teaching Your Child How to Do Autism

Mom recently read me a story about a man whose comment struck her as truth. After sitting down to plan with the school for his son, who was in kindergarten, he summed it all up by saying, “I don’t want to cure my son of autism. I want to teach him how to DO autism”.

His is a lucky child.

Autism is a tricky subject. It is experientially different. To “help” is not to “cure”. This may be difficult to grasp as a concept, most especially when the very definition of a successful treatment outcome resembles what looks like a neurotypical experience at end.

Once autistic always autistic, but autism parallels human development. Once human always human, but we do not expect humans to remain in their infant form. Autism is one kind of humanity in infant form. You would not expect a boy to “do” girl, yet you target treatments on par with this concept. “ How to do autism” is an excellent learning exercise both for the doer and his/her teachers. Growth comes through acceptance.

Why do I say this? Because acceptance of the child as an autist, is the key to developing them to their full potential as a human being. Acceptance does not preclude achievement of higher functioning, it facilitates it. To approach it differently is to try to change the nature of the child rather than develop them as an autist. It pits the treatment against the individual. Rather than partnering with your child you end up combating them. To try to change an autist into a neurotypical eradicates the autist’s soul, whereas to start from a point of acceptance causes that soul to blossom. Teaching how to “do” autism, it is the right perspective. It is the only perspective that will allow your child to grow into himself/herself as a person, not an autistic or neurotypical person, but his/her own person.

A Positive Note about Autism

Questions and comments about autism are always tendered in terms of what is wrong with it, never what is right with it. I would like to start my journal by taking time to tell what is good about autism.

We are all children of God. Autists carry a heavy burden, but also a decided advantage. Life is a matter of service and also appreciation. The autist appreciates things as simple gifts. We do not need elaborate structure or sense enhancements to see the beauty that surrounds us.

My name, Michael, means “is of god”. We are all “of God”, even me with all my perceived imperfections. Assumptions as to perfection are wrong. Perfection is as to the whole of God’s plan, not the individual pieces. We are as pieces in a huge puzzle, each interlocking with others. What I lack, another completes. Only by our omissions do we connect. To be complete would be to need no one. God loved us enough to give a son as a piece of himself to complete us so we can rejoin him in the end. Service is how we complete each other. Appreciation is our giving thanks.

Friday, May 22, 2009

The Value of Stim

(Journal entry from 2007)

Autists stim, it is common knowledge. But few understand that stim serves a purpose - actually many purposes. For some it even defines self. This was the case for me.

I am a single modal child. What that means is my senses do not work in cooperation with one another. At birth there was no sense of anything but light and dark. Later, light took on shape and color, but not form. Sound held no meaning at all. It was simply background noise. Touch was an initiation into the world. Touch was an all encompassing thing. To touch was to join, to become part of whatever was touched. I was a shape-shifter, at least that was my tactile perception.

Reality is defined by one’s senses. My reality robbed me of a sense of self. To “be” in mind, but not in body, is a very scary thing. That was my reality. What is reality, what you know to be true or what you experience to be true? And what happens when knowledge and experience meet? This is the value of a simple blade of grass to one young boy, me. It resulted in a meeting between knowledge and experience.

To feel the wind and watch the flow of color was one of my favorite things to do. I would dart about matching the movement and flow. One day there was no movement. The color stood tall and still in front of me. I reached out to touch the color. I wanted to become part of it. Then mom broke off a piece of color and gave it to me. I began to dart about. Only the color did not move with me. I could see and feel its separateness. It was light and I was heavy. I knew I was heavy because I could feel myself sink into the ground with each step I took. The blade stayed light. It swayed to its own rhythm. In it I saw my own separateness. In it, I found myself. After that, I always reached out for the piece of color. Blades of grass provided me a sense of personhood. What to others was just a bit of garbage was a life-line to me.

Can you see the importance of stim? It is so much more than what typical people see. People need to view stim through an autist’s eyes. To see it as they do, as used for their purposes. It would shift the thinking on what to do about it.

I am now 18. My blade of grass was eventually replaced by bits of string: shoelaces, jump ropes, even heavy rope, the string grew as I grew. It is with me still.

My body has since begun to register. I can feel myself as a form now sometimes, most especially when in water. My joy of water is another story, for telling another day. Even now, when things are overwhelming, I can pull out my string to remind me that I am not the source of the chaos. The sights and sounds that so excite and overwhelm me are from outside, not within. I close myself off to them, me and my string, content to know I exist.

Wednesday, May 20, 2009

My Relationship With God

My life began before my birth. My life is with a purpose, a small piece in a much larger puzzle. My life is not my life to live. Your life is not yours to live. All that is, all that is to come is known by God. Free will is therefore a false perception. God has already accounted for our choices in structuring his plan. Therefore, all action, good and bad, furthers God’s plan. All serve God, whether they know it or not, whether they want to or not. To think of one’s life is one’s own is a farce of man’s creation.

Our relationship with God is the only true free will we have. I can choose to love, or hate, or be ignorant of my service to him. It is his love of relationship that caused him to send his son. My relationship with God starts with this understanding. To see the bigger picture makes sense of the smaller anomaly that is me. I am every man’s question –If God is perfection why create me, a disabled? If God loves me, why must I suffer?

God’s perfection is as to the larger plan not the individual pieces. It may even require suffering as a bond to one another. It is each other’s suffering that we respond to in God-like fashion: the fire victim you donate clothes to, the disabled you volunteer time with, and the sick you pray for. Examples are all around you. It is our opportunity to love as God; the altruistic act as God’s love. In suffering, in our kindred failings, we form the interconnections between us. We are bonded by our needs. It is our weaknesses that are our strength – the purpose for community over the individual.

If, as an individual, you needed nothing from others would you still seek them out? God does. It is his pure act of love to want a relationship with us. It is our response that offers free will. It is the only act that is truly our own. As to the rest, we are actors on a stage, reading lines of script written long before our birth.

Free will is only as to this life. In the after life all serve God, all revere God. Even Satan bends on knee before him. People misunderstand. We reason from false assumptions. Man’s perception explains a three dimensional situation as a point. It misses entire planes of knowledge. Satan is of God’s creation. He too serves God’s larger plan.

Darkness is necessary to the light. Counterpoints exist for mutual benefit. They are complimentary not opposed; like big and little, one helps define the other. The opposite of both big and little is none. The opposite of many things is none.

We practice false relationships all the time. We form connections in our mind which hide the real connections of things. The drunk on the street corner may exist for the purpose of a single act several times removed. The sleeping bag that warms him made with altruistic love serves a love purpose; the meal at shelter volunteer served serves it too. That drunk may serve God in ways others can not. Yet people see only the drunk, not his higher purpose. Who are we to judge another? Where purpose can be defined in the happening of a second or little incidental acts of life how is it possible to know the truly important among us. Like chaos theory, it is the beating of the butterfly wing that may hold the answer to our future. And while all action is accounted for, it is God’s accounting, not man’s.

I would not presume to judge the value of another. I would not presume invaluable my own existence. At minimum, I am the drunk, a channel for altruistic action. It is a noble purpose as are all our purposes. To understand this is to be at peace with the world. To understand this is to be at peace with myself with all my imperfections. To understand this is to be at peace with God.

First Understandings

Older Journal Entry
My first understanding came as to place. “Kitchen” meant eat. “Crib” meant string no more. "To go" meant torture because my Mom would take me daily to a special school where they would practice ABA on me I did not understand. They would attempt to teach me – what I don’t know. I learned my own lessons there instead. I learned if you sit and stim on the chair with a hole in it, the potty, then pee as soon as they take you off, you never have to do any work. School taught me that peeing alone could rid you of the expectations people thrust on you. It was a lesson I practiced a lot as a child. I learned if you pattern a response you still get enough juice to drink. And I learned if you laugh for Lisa she will tickle you. I loved Lisa and she is a story in herself. And I learned if you play dumb people will assume you are dumb and leave you alone – well most people. (Mom is not most people, but that too is another story, one of awakenings for me.)

One day a man came. He was the first thing in my life that actually made sense to me. It was a rule he taught me – do it, and escape. I learned I could retreat to my autistic home without fear of intrusion if I did what they wanted. "Come here" called me out of my home. "Go play" rereleased me to it. It was control he offered me. A gift that let me keep my autistic home pure from invasion. In my autistic home I meditated and talked to the light. In my autistic home my identity was intact as a soul. I could endure all manner of torture in the world if it meant being able to return to my home in end. I could go to the world then back to my world as a place of pure light and love.

Only I found that the world was not all bad. At times it was full of tickles and love. At times it was full of beautiful color patterns. When little, I used to entertain myself on the kaleidoscope of color formed by the world.

I can not tell you when things started to make sense for me just that it happened. Not all at once, and even now, not all. Where I could not work them together I learned to channel my senses one after the other. I would see then hear, or hear then look. What I saw was still a false impression. But at least it was a start.

Nothing in color made sense to me. To see color broke things into pieces. But I could match to shape or object if the color was solid. I am aware now of some of the programming that was done on me, its goals. To identify objects and pictures is one of the first programs in ABA. It is done as a match, “put with same”. I had the innate ability to match to shapes of solids but what I was matching held no meaning to my eye. 3D to 3D matches I could do, but it was meaningless. 3D to 2D and 2D to 3D was initially a failed attempt. The form I matched to, the outside shape had no match in the 2D representation. Eventually I learned to match to a 2 dimensional outline of 3D objects and visa versa, but this was never the ultimate goal of the lesson. Everything else was a failed effort. Color broke things into pieces and color blocked content. Not until my mother realized this did she finally stop trying to teach me to match pictures of objects. Even now, I can see parts or I can see the whole, but to see parts within the context of the whole remains lost on me. It is a huge disability.
I still spend hours on my own looking at magazine pictures to match them to the 3D world around me. Photographs are the least confusing for me. I learned to read by matching letters on labels largely because the letters held more meaning than the pictures. To see things as a whole unit is how I had to approach things. Mom just reminded me that I learned my color words by embedding them in the color. Another autist might respond to embedding the color in the word but not me. For me to see the word in color would have hidden the content of the word. Theirs is another issue. Each issue has its own appropriate learning technique. Mine was largely a visual processing issue.

Not that my auditory system functioned correctly at the start either. Sound was originally without meaning or direction. To hear a twig snap, or water flow or laughter; it was all one huge background noise to me. A dog's bark held the same significance as your words. Both alerted me to something yet unknown. The first word I understood was my name. My mom would soothe me singing it in my ear, over and over again, after the car accident. I lost my sight for a time because of the car crash. It let me focus on another sense as having meaning. Without the crash I sometimes wonder how long it would have taken me to figure out that sound had meaning.

I also had motor issues which blocked my demonstration of understanding of meaning. A single motor action I might be able to do. Chained actions were an impossibility.
I was a nonperson physically as a child with all that that entails. My tactile system's failings left me without the sensation of a physical body. Think of a ghost trying to get its bearings to move. I was a nonentity in the world. I lived a thoughtfilled existence though.

I smelled my way through familiar things. Most smells mixed to nauseate me, so I would mark things with my own scent.

Reading saved my learning. I could sight read words long before I understood what the alphabet was for. I thought the alphabet was just one huge word. This is my beginning. I had far less than most to work with at the start. But I had my intellect as resource and stubborness as drive.

Tuesday, May 19, 2009

Welcome to My World

Welcome to my world. You have no idea how freeing it is to say that. My whole life has been a separation of worlds. It is the crux of the autistic experience. Who I am, my molecular make-up is not that of a neurotypical person. You try to make birds of flying insects with us; both have wings and fly, but they are entirely different animals. To treat me as a like species robs me of my own unique identity. I am not saying that we should not be developed; it is how you develop us that is at issue. To try to make me into the mold of a neurotypical person is not the answer. You expected a robin, but were gifted with a butterfly. Both are beautiful in their own right. Autism is like the caterpillar. You don’t know what to do with him, how to care for him. Instead of feeding and nourishing him, you treat him like a bird - and in doing so you feed him to the birds.

To teach an autistic you need to understand autistic development, not neurotypical development. It is not the same. Experts argue over what skills need be developed first. There is a huge population of autistics for whom skills are not the appropriate measure of application. Autists are sensory beings. Skills build upon an underlying sensory experience. Absent the prerequisite connections, the skill can not develop. To teach is to understand the prerequisites to learning. It is a bit like trying to understand the elements in absence of understanding molecular makeup. Only once you understand the parts: electrons, protons, neutrons, can you see their interrelatedness.

Forming an understanding of autism requires first an understanding of sensory processing. The senses give meaning to outside stimulation. There are many, many interconnections. To process correctly is to see none of them, so automatic are they. Only in the failed processing do you gain insight. That is my value. Mine is a failed process. To see and understand my limitations of functioning is to provide small insights into how the senses actually work, connection to connection. Once you can see the pieces, how skills process becomes the topic of conversation. This is the level of analysis that needs to be taking place in autism treatment. It is the missing component. In order to teach a skill the question that need first be answered is “Does the child have the prerequisite sensory connections to support that skill’s processing?” Failed Skill sets can tell you underlying processing. Why is it important? Because to fail to see the underlying processing issue is to fail to teach around it, or bridge for it, or adapt for or accommodate to meet it. To realize the deficit is to be able to teach. To fail in it is to place unrealistic expectations on the child. In the extreme, it rises to the level of literal torture of the child. I was tortured by behavior modification therapy. I lived a life of hell. I developed fear to point of overwhelming because of it.

It is not the intended lesson, but the actual lesson that molds the child. It is not what you intend to teach, but what you actually teach that matters. As an autist and child I depend on others to do what is best for me. My others failed me miserably by initially following what is the normally prescribed method of treatment, ABA.

Use of ABA has its place for some, but not with the severe sensory dysfunctional child. It was known my senses did not function properly. I had a sensory integrative evaluation that told my experts this. The OT’s knew I had poor awareness of my body in space. Yet the impact of this was never considered for programming purposes. They looked at what I could not do, but never attempted to reason why it should be that way.

Do not fault my experts. They are notable experts. It is the prevailing view and approach we are talking about here. Focus currently only goes as far as the skill sets, what a child can and can not functionally do. Skill sets can be used to identify underlying sensory processing issues. To know a child has poor body awareness in space should raise a red flag as to any skill requiring movement directed responses. Touching head, whether in imitation or in response to a responsive language drill becomes difficult, if not impossible, for the child who can not feel him/herself as a physical form. Moving things to any relative position (in, on,under, behind, etc. ) presents like problem. Hence, I could copy to put a block in the bucket, but could not move an object into position in, on, or under something. Putting it in the bucket had a single end point for me, so did placing an object on a spool. “Moving things " in, on, under” requires relative positioning. I could always do “in”, but to repeatedly answer correctly amid other wrong answers hid that understanding.

Moving self to a position would be completely impossible. I didn’t know that I was, let alone where I was. Direction requires a starting point to reference from. Eventually I learned to use others and things as end destination points instead. I would move to places not from places. I move to go across the room by aiming at the door or window. Moving to go to an object is much easier than moving to an area of open space. It is an identifiable something to direct to. Open space is without direction. Even with an action it is easy to get lost.

What is “finished” is often cued by directional understanding. Attending to whether I am creating or disassembling something is a secondary cue for me. I think it is a dominate cue for others, but not for me. You use as dominate what you attend to first. For me direction is always a dominant consideration. It is like air to breathe, a necessary attention. But attending to it, in the sense of recognizing the need for it, whatever “it” is in any given circumstance, does not mean I can successfully achieve a sense of it. One can achieve “it” in many different ways: through developing the actual senses, through adapting presentation so as not to require “ it” , through accommodation of materials so you can do “it, achieve “it” a different way, or by bridging “it”, as my mom says. I’m not quite sure all that entails or how she does that other than to tell you I do end up with the skill in end.

It should also be mentioned that a skill is not a skill at all where it is not “generalized” as the experts call it. In simple terms, what you are seeing is not what you think. By example, to match things to shape as I learned to do is not to match things in the context the ABA program was conceived in. Every failure teaches, or should teach, the teacher something. You fail to learn from the errors because you have no understanding of their individual and paired significance. My experience will hopefully provide a look inside at least to a small part of it. If I can provide you with an aha moment, what my mom calls them, perhaps you will be motivated to search out others on your own. Small understandings can often grow into larger ones. It is my hope.


Autopsy of an Alien

I am an alien, an alien to the world, an alien to my own kind. Autism is a distinct dysfunction where even autists are differently wired, differently affected. We are bonded by a label that may or may not be appropriately applied, may or may not reflect mutual underlying issues.

I am a sensory dysfunctional autist. To see me is to see the outer trappings of a retarded individual, yet my mind is alert and intelligent. My body’s senses do not operate correctly. At their worst they precluded me from functioning at all.

At the start, I was a single modal child. “Single modal” is my mom’s term. What it means is that my senses do not work together. Neither, when I was a child, did they process correctly alone.

To see was not to see. To hear was not to hear. Feeling did not exist for me at all. . I could visually process form but not the identity of objects. I could hear sounds, but they were not directional at first so I had no idea what was making them. Something as simple as seeing and hearing at the same time was impossible for me. As a very young child the world held no meaning for me at all. I had little motivation to learn when nothing made sense. I lived a mind-only existence, my body a faulty transmitter of false information.

In dealing with a single modal child you have to understand their meaningful sensory input in substantially narrowed. I started with just one sense intact and that was smell. I can identify most anything by smell. People and objects all have smell. It is smell I used to recognize people. I would sniff my mom to calm myself down or use my own body smell to mask those I didn't like. Sniffing people's hair was also a large stim for me... and old people. I love the smell of their skin. When young I could get away with it because I would kiss them at the same time. I am not so keen on smell anymore but i still notice it quite a bit. If someone asks me about feel, it is smell that I recall.

I already told you where I started with my tactile sense. Even now it is largely useless for most things. Mom says I lack modulation feedback, but it is much more than that. What I feel is off too. My touch is limited to points. Things are either smooth or edges. No other textures exist for me. What is the difference between fur, sponge and sandpaper? It is all just flat to me. That is as much as I can discriminate about them. What is hot or cold? I sweat in heat, but I do not feel it as a temperature. And what is gentle or rough? Gentle I try to gauge by eye, but I don't feel it. How many times have I broken toys or furniture for having been too strong in my motor initiations?

Mine was an object based existence. To move, I aimed myself at things. How different it is to be able to move with yourself as a start point. To move as myself has opened up the world for/to me. Mine was an object based existence; now it is a me based existence. I am now the center of my world instead of being lost all the time in it. Lost, you can not get your bearings. As myself I can act with purpose to do things on my own. How to do them, it is another issue for me. Orientation of myself and things in space is a continuing problem, not because I don’t know I exist now, but because it is me in relationship to something else. I still need to figure it out. It becomes even harder when it is me in relation to something in relation to something else, orienting a piece within a puzzle for example. I am still very weak in it. It is a lesson best learned in two pieces. Matching to color parquetry would teach me, but the program was stopped before I found my body as self. I am not the best student but I know my failings. If others knew, I think I would have learned a lot more a lot sooner.

At some point I started to see, but not like I do now. Colors were shapes, not things. A stream of colors was my plastic chain. I would twirl it and watch the kaleidoscope turn round, my lights intermingling with the colored tangle of rope. I could see, but not to make sense of what I was looking at. Sight was about movement and flow, not meaning. I would dart about matching the feel of what I saw.

And then I started to hear. Again, not like I do now. My first memory is my mother’s voice softly singing in my ear. It was a sweet relaxing sound, rhythmic, repeating. I don’t know what the words were, but it still spoke of love. I loved that sound. And then there was water; oh, how it excited me. It was a stream, I think. Gibberish too, only without meaning, so I understood I didn’t have to try to interpret it. I could sit and hear its rhythm of motion.

I tried to match the sights to sound. When I could see I could not hear, so it was a big guessing game. My mother’s sound I knew first. Sometimes I got sounds wrong. Once I thought a bird was sounded like an airplane. I thought it was easy to tell at first because of the sounds direction. Only later did I come to realize birds make no sound in flight.

All sound is a good thing for me. I love the uniqueness of sound, no two the same. It speaks to me without the need for understanding. Cracking or breaking noises I like best. It speaks to our human frailty as a creation temporary in this form. I remember getting lost in sound. I would just let the sounds take over and I would melt away into them. When I was young I could do that – isolate myself to a single sense. At first, it was not a matter of choice. My senses would cut in and out on their own whenever they wanted. One moment I’d be seeing, the next I’d be blind to visual meaning. Always it was a surprise to know how I had learned something. To call it learning is a bad description. Even when I knew what was wanted I could not use my other sense to pick. Mom would drill me relentlessly in Lovaas, it is called, but I could not hear what I was looking at or see what I was hearing. I learned to guess at answers, sometimes being rewarded, for what I never knew. Let me say Lovaas may be a good teaching mechanism for some, but not for the single modal child I was. Lovaas taught me failure not success. It took an anxious child and multiplied his fears to overwhelming.

Sound is my strongest sense. My ears hear more than yours, even more before the accident. Your whisper is a full blown shout to me. I hear across rooms and walls all the time. My world is often loaded with garbled noises. What to pay attention to? It is a problem. I can discriminate tones. Let me say my mom is all tones. You can tell her mood, anger or love, by her tone. I would be lost for meaning without tone. How would you know about emotion through sound without it? Not that tone helps with attention, but I know the sound of Mom’s voice. I can tune in to that sound quite effectively now. Voices are a lot easier than when I started.

In the beginning, all sound was just background noise without meaning. In the beginning, I thought all sound indicated life. Death was not something I anticipated. Even my string lived in my mind. It moved on its own motor so I thought it lived like I did. Good thing I figured that one out. It was a shock to learn all my friends were not alive, but objects. Conceptualization is a process just like sight, just a different kind of sight. My intellect is there, but my body is still the teacher. So many misunderstandings I had. Reality is tied to experience and my experience was senses that provided incomplete and false information. I am not stupid, but some of what I believed sounds stupid.

In growing, I learned the best I could with what I had. I made up games to remember things. I learned to link things together in mind-bits. That is how I had to think. Answers needed questions. Like a huge game of Jeopardy my life was. Neurotypicals have a habit of asking a question within a question. Polite no’s don’t work in answer. A question first implies the question “will you answer?”. I say no to answering the question and you think no is the answer to the question. It used to get me in trouble all the time. There are lots of misunderstandings in word play.

My mind does not organize like yours. You go from general to specific. I go from specific to general. Who decides what is the attentional component of something? At times the parts are more important than the whole. Very detective like I am noticing small things, unimportant to you, imperative to me. My need is to move. I use cues to move. Mom, I know her heartbeat. I just move to it sometimes, a steady beat it is. I bet you don’t even notice it. To feel it is easy through her skin. I can feel motor. Her finger, it speaks to me to write. The beat is a tiny cue to start the movement toward the keys. I can type easy with mom’s finger in hand. To type on my own I have to find my own heart beat. Get excited and it is too fast to use. Only now I try to find other cues to use. Starting and stopping my motor movement is hard. It is the story of my life figuring out little tricks to use. Cues are the difference between functioning and existing.

I am a functioning brain in a dysfunctional body. I am not inclined to stay that way but my body is not my own. It is God’s creation for God’s purpose. He knows better than me what is required for his work. I trust him to not allow me to suffer for no good reason. He has lead me to stand with a foot in both worlds for a reason. I am an autist, but I am also a believer. It colors my experience every bit as much as my other senses. For those who feel his presence there is no fear of autism. My world was a safe haven not a prison. Others may experience it differently. The fear is what drives you one way or the other. In the right circumstances it should be love not fear that drives, but a love relationship is hard to develop. Lisa did it with me. My mom drove me to work through sheer terror, but Lisa did it through love. I understand why my mom did what she did, but it was not the best approach. To gravitate toward love is better than to act out of fear. To fear is universal, but not as the autist fears. To feel is a whole other experience: delayed, as a tidal wave, blind intensity of emotion, emotions that make no sense or that out distance the act they are reflective of. For me, my emotion is delayed. Its intensity hides its message content. To feel as an emotion puts me into overload, the feeling larger than the act in importance. To not get a soda reduces me to tears. Easier it is to turn emotion off and respond based on trusted others. Living in the world requires choices. For me the choice is to function in my autistic form as best I can; life in the world, but not of it, life as an autistic alien.

Monday, May 18, 2009

Integrity of the Individual

Each autist is an individual with their own unique perceptual reality

Autists are individuals first. We are bound together only by our alienness to your ways. I am an alien to my own kind. I am an alien to the world. I can not speak for other autists’ experiences, but I can speak to the universal experience of alienation. I can recount my personal experience and struggle in hope that a piece here or there will help someone. Mine is not the answer, just one potential answer. In starting this I want my fellow autists to know they have my deepest respect. I do not wish to contradict anyone’s individual truth. Integrity of thought is imperative. Integrity of the individual depends on it.

You come to this blog for the purpose of finding answers that will help your child become a fuller person. Your first answer is to understand your child is already a complete person with an intact soul. Learning and expression are the issues. Autism protects personhood, it does not detract from it. Initiating personhood in the outside world, that is the process we need to address.

Friday, May 15, 2009

What makes you a Person?

Mine was a journey from soulhood to personhood

What makes a person? Not looks or talents or even personality. For me, personhood is a matter of physical form. You have it. I lack it. My tactile system is corrupt. To feel is not to feel. to be is not to be. The tactile feedback that delineates our body boundary, defines our separate identity, is omitted from my sensory functioning. To explain, it sounds simple: to live, it is complicated. My body is broken, but my mind and soul are intact. Mine was a personhood based solely on thought. Like a shape shifter my body melted into whatever I touched. I was part of everything and nothing all at once. To experience my personhood required I lock myself off from the world. To join the world was to lose myself, quite literally, all physical sense of self erased. It was bodily death, even while the mind survived. How does the mind function without a body to direct? How does a mind function without a body as its reference point? This was my dilemma of learning. This is my dilemma of living.

Meaningful experience is the basis of all learning. Autism robs the body of meaningful experience; whether through one sense or another it is all to the same effect. Personhood is preserved, not destroyed in our autistic state. Retaining personhood in the outside world, that is the challenge that faces the autist. It is the challenge I face every day.

Thursday, May 14, 2009

Introduction - In My Voice

I want to dedicate my voice to Bill Stillman and Mary Lapos because without them I never would have found it.

My name is Michael and I am an Autist. I have spent most of my life trying to decide what that meant. Is autism who you are or a disability you experience. Autism is a different way of being. My autism is what I want to talk about. Each Autist has their own unique reality , but there are shared experiences throughout, especially as to different types of underlying problems. My autism is sensory based. I began as a multi-single modal child. Some of my senses don’t function properly within themselves. Most did not function in conjunction with other senses. The result is a physical world that makes no sense and can not be interpreted as meaningful experience. I am choosing to speak out because I can where others can’t. Most with my severity of symptoms never make it into the world at all. We are the Helen Kellers of autism, likely labeled severely and profoundly retarded; suggested institutionalized at outset. This was my diagnosis.

It is clear to me that the normal person’s senses function very differently from mine. At the same time, never having had a normal system, it is difficult to know exactly what those differences are. I think I will need to leave it up to you, my reader, to draw your own comparisons and conclusions. My system has also changed and evolved over time. Without those changes, I would not be functioning today. Some changes, I know how they developed; others, just appeared. I will try to speak to both.

This blog may benefit no one, some one, or a lot of people. My thought is to speak to my own autism in hopes that others may find glimpses of thoses they know inside. Tiny keys to understanding is what I hope to offer, each key unlocking one more chain of autism.