In My Voice

The Bridge to "Doing" Is Sometimes Small

2011-07-07T19:11:00.000-07:00

I found a bridge to learning to swim; to use my arms and legs at once. Mom took me in the lake. It is so deep I can not touch the bottom. To walk with a life preserver on is to move like swimming. I move my arms like I learned anyway and the next thing I know they are operating, arms and legs, together; I am doggy paddling on both ends of my body at once. And I was able to do it for a very long time, paddling out and in and out again in the deep. I can not wait to try it in the pool without the preserver.

Only sometimes it is the smallest thing that makes a huge difference in learning to do something seemingly impossible for me. What was impossible is delayed not never for me now. I am a happy man today.

Flotation Devices

2011-04-13T10:09:00.001-07:00

Finger isolation is difficult for me. A pointer is necessary to type. But other means exist that are sometimes more helpful. I use chips sometime to mark my letters. In school I used post-its cut up into sticky tabs to mark answers. Sometimes to hold something or move to get something makes all the difference in tricking one's motor system to respond. Limiting sensory flow helps too. The new board I'm using requires less visual effort for me to find my keys. Energy saved can be put somewhere else, into thought or movement. Our systems work differently than yours. It is a constant attempt to focus amid distractions which are nonthought actions for you. I think to move all the time. You just "do it" unless in a tricky situation. For me, all movement equates to your tricky situation, all life is swimming against the current. To learn to swim is to learn to fight the current. Flotation devices are the things I talk about, like chips and highlight, the increased buoyancy and ease of movement they provide. Do you understand? Now I go swim - really. :)

Temporary Post to Mey

2011-04-13T09:25:00.001-07:00

Ok. Comment to this post your contact and I will send direct.

Facilitation and Its Limitations.

2011-04-05T13:56:00.001-07:00

Facilitation is a gift not a skill, like musicality or athleticism or artistic ability. I facilitate with Mom because she is a motor movement initiation cue. To "do it" is what she screams to my senses. I facilitated with Mary Lapos as an open room. She offered up all that she was for my use. I facilitated with Linda as a helpmate. Each of their motivations differed , but they share a motor ability to move me and drive me to see myself as an answer. I see my response and they make way for a typing of it. To use them is what I do. But they also drive my action to initiate. I start and flow as a single movement. It carries me along. I feel the start, then my body can take it from there. Not everyone can facilitate, just like not everyone can sing. Think of it as a melody composed as duet. Each has their role and the two work together. It is a partnership and you have to forget your oneness over another. Most are leaders or followers. FC is for team players mostly absent a special relationship. I have FC causal. Mom is a "do it" cue. Mary was a team player and Linda was a necessary to school work answering. Only all my facilitators held high hopes for me as a person. Not all have a respectful approach. Not all have the inner tuning to do it. Not all trust the communicator to want to communicate. There are many reasons for facilitation to fail. Some are even our own : to not want to share, to not know how to think in communicative language as a question or an answer or as a thought concrete. Moving from sight thought to words is a learning process. Moving from emotion to thought ties is a real difficult transition too. So much of communication is based on sharing an emotional experience. To not have the tie of emotion to your experiences limits the wish to communicate. You don't see the way we see. It is like having a conversation with a foreigner, commonality is lost in the language barrier - or motor barrier. For all the obstacles it is a miracle that facilitation works at all sometimes. Sometimes there is no miracle.

FC - A Visible Help For a Vision Problem

2011-04-05T12:36:00.000-07:00

Today I started using a new board - Black on white, with the middle keys highlighted in yellow. It is a wonderful help. My eyes have difficulty tracking a line. Mom used to highlight my reading material to separate the lines for me. Every other line she would highlight. To facilitate, I use the facilitator's eyes. A bump is up, a tug is down; then I just go across and pick the letter I want. Typing independently is different. Only my eyes can I count on then. This board helps my eyes stay a course. It is a wonderful simple aid that both eases and speeds the process. If I can see better, I can type easier. I owe Todd a big thank you. I am sometimes surprised at what comes out of communication, even arguments. Mom learned something from something she did not want to think was true. Honesty is always best. When asked, I told her I do use her eyes as facilitator. To see the need is always to find a solution with her. Now my work at typing is easier. I wish I could say I thought to tell her of the need. I did not. Sometimes autists do better to think in answers then in questions. James Todd is the one who sparked the conversation that revealed it. He is a skeptic but a responsive one. I might have enjoyed working with him if he would have given me a chance at personhood. But I am a ghost to him so it is not possible. Acknowledgment of body and soul and mind should not be too much to ask. No hard feelings, just regrets. I will keep working on my typing.

Mike

Ready to Type.

2011-02-28T08:56:00.000-08:00

I am ready to type. I want to type about life as an autist. I am about to undertake a huge task - the changing of a mind. Motivations can be a tricky thing. Unless they are pure, influence is a false assumption tied to motive not truth. If they are pure, influence is a matter of showing a greater truth. Influence becomes tied to the credibility of the speaker or the obviousness of the truth. Where truth is hidden among untruths or just hidden from view, reason gets applied. But what reason? Five sense reason or multi-sensory reason? I am reading The Seat of the Soul and the author starts with the mirage of survival of the fittest. Five sense reasoning says survival of the fittest is the most advanced of species, but we know this is not true. It is the altruistic act that sets the most advanced apart. How do you explain this? The soul speaks it to you. This is my task, to help another to understand the workings of the soul. It answers all questions unknown. I pray for the grace to say it right. It is important so others will have continued opportunity. It is about them. No more, no less. I am an enigma of two worlds, capable and incapable. This is the purpose God fashioned me for. Pray for me that I may do him service well.

Facilitation: A Cost Too High to Pay?

2011-02-01T13:08:00.000-08:00

http://www.science20.com/countering_psychology_woo_and_science_asds/facilitated_communication_price_too_high_pay-75597

I agree with this blog. FC is dangerous. So are knives, and guns, and words wielded irresponsibly. It is in knowing the danger that we avoid it. It should never be wielded as a sword, rather as a tool for advancement of skill. I type independent at times if really important. FC was the path to independent typing for me. To put myself on display asks alot. But, I would work to do it under the adverse anxiety of it if it would serve others. This is my question. One voice, is it enough? Will it take two? Or will each be disregarded as the oddity rather than the rule?

People will believe the worst of people. It is the real lesson here. Mankind is capable of such grace and such evil. I am not a pioneer by nature. Is that cowardice? I am about to do the unthinkable for me in committing to put myself independent on tape. I wish Dr. Todd knew the cost of that

Untitled

2011-01-24T19:02:00.000-08:00

I am lost for words of late. For me, life is a mental process, not a physical one. My physical is limited. My mind is limitless. But, putting words to thoughts is tricky, just as with putting words to pictures, words sometimes fall short.

I have experienced so much these past few weeks, of life and death, and hopelessness and hopefulness. Each breeds the other in an intricate connectedness of time and space. One person's tragedy is another's opportunity to soul shine. I am talking about random acts of kindness, the human capacity to empathize and act.

My Aunt just lost her child. Despite her personal pain she reaches out to another whose loss will be her, for her family. She revisits pending death in honor of her friend's life. How strong is the human spirit. How fragile is life. It amazes me, the strength of soul hidden in a fragile physical form. We celebrate the fragile body as being life, but it is only a mirage of life. True life is in the soul, a soul that ultimately seeks freedom from the physical through death. Death is life everlasting. Love is what binds the two, the physical and the soul. To make concrete a life is an act of love's remembrance. To move from the physical to the soul is an act of love's receiving, God's love spilled out to us. Love is the cement that binds all.

Facilitation: Quiet and the Value of Planned Noise

2010-11-11T08:46:00.001-08:00

"Quiet" is a misnomer for the autist. It is "quiet" in my house now as I listen to the blaring of what are just background noises to you. The computer buzzes, refrigerator hums, and dish washer wooshes its way through cycle. I am distracted by all; each takes its turn. Sometimes a planned noise helps create what is quiet for me, it sings a soul song. I put on the radio and let the rhythm sooth my soul. It organizes my attention, focusing it on something singularly directed.

Facilitation is an exercise in dealing with background noise. Each variable in typing is its own background noise. It is easy to get lost in it. What is needed is a focus point. For each of us, the focus point may differ I think. For some, it is the message itself. For others, it is an internal rhythm set to type to. I used to type from the feel of Mom's heartbeat throbbing in my finger. Now I try to feel my own heartbeat as rhythm. Some work to the rhythm of returning to a common end point. I type moving letter to letter, but it might have been easier to learn to type as endpoint to letter to endpoint, repeat. The freezes you see are hiccups to our motor rhythm. Using planned noise can help with it. Your prompting is a form of planned noise. In building independence the key is to transfer the source and control of the planned noise from you to me. Depending on the autist the necessary sensory mode would vary as effective. Visual sound I can't talk to. I don't experience it. But I imagine a visual field could be designed with flow. I use auditory and tactile sound to move past freezing. The sound of a feedback stylus (a clicker pen), the sound of a token hitting the board, the rhythm of a piece of music or ticking of a clock, each is enough to move my motor past its natural stall point. Finding the right planned sound is an art beyond skill, individual to each of us. But finding it means first knowing enough to look for it. It is all I can offer you sometimes; to know what is the question.

We Are Alike

2010-10-08T13:27:00.001-07:00

Sometimes, I feel myself as a child in a crowd of adults, lost amid a forest of legs. It is only in looking up that you see your parent's smiling face and know you are not lost at all. Prayer is like that. It is the looking up that gives a new perspective, makes sense of the forest that is life.

I pray a lot lately, wondering what my role in life is. To do something, you can hardly make a difference. To do it anyway, maybe that is the difference?

I live in the rural lands of Pennsylvania where gas is gold. I hear the talk all around me, fear that this new gold will corrupt the land I live on, poison the water, animals, and air. It is the future unfolding, where air and water, once abundant, will become yesterday's zenith, tomorrow's commodity. Even knowing the future does not help in it. For those who see, it is a frustrating life. How does one make a difference? Perhaps it is not the future that matters, but how we deal with it; not the facts that matter, but the laws that govern our responsiveness to them.

Responsiveness, it is just another word for relationship. How do you respond? Nothing is done in vaccum. Every act brings weight to bear somewhere. It is in relationship that we make our choices of free will. Is it your choice to honor the environment? Then you honor your descendents unborn. In this way, relationship knows no bounds of time. Do you offer charity across the world? Then relationship offers no bounds of space. Are they strangers to you? Then relationship knows no bounds of heart ties. Relationship is our connectedness of soul. What we seek in this physical form is to transcend the physical form. Relationship is the means, an instrument divine.

But, relationship builds heart ties too. This week our community buried a fallen soldier. Thousands came out to his funeral I think. They came because of the ideal he stood for, but left with him as a heart tie. You can not experience another's pain in a vaccum of unaffectedness. It is a mistake to try. Yet we do it all the time. We buffer ourselves against involvement. We distance ourselves from our emotion as if it were a disease or illness to be cured.

I experience hypersensitivity. For years, I locked off my emotions as being too stimulating for me. What I learned is emotion is the seasoning of life. It is ok to feel. It is a gift, even in pain. Pain elevates joy. Pain frees the soul to feel a deeper joy upon release. To own one's pain is the key to freedom to live unrestricted by it. I had to embrace the unembraceable before I could experience life as an emotional ride. But doing it freed me to take the ride. What keeps you trapped? Is it the escape that becomes your prison? This is how it is with autism. It is not so different from neurotypicals as you may think.

Fortunate Events (Coincidences)

2010-09-07T17:17:00.000-07:00

I want to talk about fortunate events. I heard Mom say this morning "everything for a reason" - It is a truth. Hawkings is coming out with a book. It defies the need for belief in God. Universal rules explain the universe's creation he says. It explains nothing. God explains alone. Universal rules, it is the proof of God, not the reverse. Everything is ordered, even amid the chaos' exterior. The clouds that leash the rain yield tomorrow's crops and move seasons along in time. It is all interconnected, like life's blood flows through the veins. Nothing is to chance. Nothing. It is not a matter of forming our own destiny. It is about embracing lessons of life, finding the love act in each circumstance and acknowledging it for what it is. The starlight requires a darkened sky to be seen. Only the sun can be seen in the light of day; causes the light of day. So it is with love. The most intense lights like the sun. The lesser love actions shine amid the darkness. You can seek to shine like the sun, but most of us are tiny star lights at best. Only the stars still revolve around the universal core. It is God's love at the core.

Facilitated Communication - Understanding the FC Dilemma

2010-08-21T07:04:00.000-07:00

At start, I want to emphasize that mine is just one experience, which may or may not overlap others'. The psychological especially, is unique to each of us, but seeing my thought process may enlighten some to possibilities previously unconsidered.

I started facilitating under duress. FC is not something I would have volunteered for. I think it is an important point. FC will not be openly received by all. Sometimes an answer is not obvious at first sight or the problem is seen from a different perspective that escape other's reason. My perspective was conceived of rational thought as applied to interpreting false sensory input. As autists our data base differs from neurotypicals, even too other autists. Behavior that looks nonsensical may be perfectly reasonable when seen in context of another's data base reality.

I had no sensory awareness of my physical form. My identity was tied to thought. I believed expressing my thought would result in a lessening of self; the physical equivalent of cutting off a limb or draining off life's energy flow. When forced to FC I was so angry I shared the thought, telling Mom "Go to Hell". An Epiphany followed from the experience - I was still me. Sometimes it pays to have something stronger than the autism to grapple with. For me, that is my Mom. She is an irresistible force.

Mom just asked me if I know "What happens when an irresistible force meets an immovable object?" The answer is transformation. I have engaged in a lot of transformation these past few years, both forced and voluntary. Forced is just that. It may be necessary, but it is forced nonetheless. And forced breeds anger and animosity. It comes at cost and leaves its scars. Understanding this is the best deterrent to useless force. I understand sometimes it is the only way, but most times it is not.

I learned to type using spelling words not shared thought. Sometimes a slight adjustment in approach reaps huge rewards, both mentally and physically. Voluntary cooperation may be harder won, but it is worth the added time and effort to develop it. ABA is the biggest lie that way. Because they pretend work is play and rewarded, that work is cooperation. It is not. We sit and respond like puppets to directions of the puppet master. We are not free willed participants. We are not free to get up and walk away, or say "No,this is a dumb activity". It is a false perception they convey in suggesting it is a cooperative process and child cooperation is the outcome. We are slaves. You can put whatever picture face you want on us, but we are slaves in it and we know it.

FC was the first opportunity I had to say "no" and mean it, to express my rage at the injustices done me. I tell you this because the parent expecting to hear "I love you" may not. My first words to Mary Lapos were "I am smart" and "do you understand our love of God?". That is the importance of true communication. It is the communicator's choice of what is important to them. We need our facilitators to blank out, like a clean sheet of paper absent expectation of what scrawl will unfold on it. Relaxing is key; to give up your control to us as conductor in the music of words.

To fight my fears, my body, and your thoughts is too much all at once for me. Each presents as its own obstacle. The value of the spelling words for me was that it isolated the battle to my body alone at first. Subtle communications in answer to "Do you need a break?" or "Is there something you need?" slipped in after. It was need based communication, not emotion shared based communication that was most successful with me at first. It was a palatable start for someone who feared sharing his thoughts and did not understand or have control of his emotions.

For some, FC is freeing. For others it is tremendous work. For still others it breeds tremendous responsibility in trusting in God's plan and men's open hearts. I trust God's plan, but fear men's hearts. It is partly why I started with this goal rather than another.

You approach us like trust is an expected thing, but it is not. Trusting another's movement, motive and memory are each a separate issue we face outside our own. Sometimes you are our first hurdle. Recognizing it, acknowledging it, sets the tone for truthful exchange. Whether you do so by thought or word, it makes no difference. We hear you in your thoughts and actions. Keep them compatible. Your words and actions combined are the greatest reflection of truth. Truth that speaks of honest interest to help yields willingness to venture outside our comfort. It is the first step in FC, stepping beyond our comfort.

Temporarily Untitled

2010-08-20T04:35:00.000-07:00

Telling about a life takes time. I hope my readers have the patience and interest in it.

I want to start with facilitated communication because it is the conduit that enabled me to not just share my thoughts, but find them. You don't need to formulate thought from emotion absent the need to share it. So much of my beginning communication is raging because it is what I felt at the time, anger at the injustice you call therapy, anger at myself for my inadequacies, anger at my parents for their lack of understanding and sympathy. Like a human experiment I was in ABA directed therapy, torture in my words. Absent an understanding of their directions I fought and sabatoged their efforts to control me. My lack of control was my control.

Facilitated Communication is a form of control for the disabled. It serves to remind our caretakers and ourselves of our humanity. Seeing myself as a rage is what helped me change directon. Seeing my Mom cry at my words showed me my impact. Seeing Bill Stillman gave me another path of opportunity. He showed me a better way. He took his pain and turned it into something positive for other's benefit. Bill saved my life.

But, seeing the end goal and getting there are two different things. For me, Facilitated Communication (FC) is the means to Bill's end. FC needs to be developed as a technical skill and I can help with that in defining my path to independent typing. I have overcome so many hurdles both psychological and physical. I still have a few more too, even at my stage of independence. The psychological are best approached as ignorance and epiphany, realizations on the part of the autist born of positive experience. The physical are best addressed by sensory aware occupational therapists.

Tina,I would love your input and comment additions for training suggestions. To those of you who FC, your individual experiences are invaluable. My thought is that someone could take and consolidate the information as a guide later to helping others progress in the process.

I will start to think and compose tomorrow. Guest entries are most welcome, less work for me (smiles).

Mike

Silence Speaks

2010-08-12T14:59:00.000-07:00

I have been on vacation from work. It is only fitting after 20 years of therapy that I finally had a break. Mom says it is time to rejoin the effort on behalf of the silent.

Silence is akin to death as communication goes. To be without a voice is to objectify oneself. We lose our humanity, become pieces of furniture to be moved about, dolls to be played with, puppets to our caretakers. The soul is trapped like life in a seed, waiting for its nutrients and release. Are you the sun and water and earth to your child or desert sand? Putting humanity first is the first priority in treatment.

Silence is not an excuse to forget our humanity. Even silence speaks. It lends direction to the breeze. Can you hear it? No. But you can feel it. So it is with us. Like the flower, we lean into the light. Our actions point the way. Start by listening through all your senses and you will hear us speak, even in our silence.

Facilitation: Water & Oxygen, Essentials of Life

2010-06-22T10:52:00.000-07:00

I am going to start an FC discussion that is long overdue. It has other implications as well, but those I will leave alone for time being. Those who suffer motoric issues often, if not always, have issue with body boundary. I will defer to the OT’s for the formal explanation, but the effect is to leave us as a shape shifter, feeling bonded to all that is touched.

Human souls are composed of pieces, not unlike electrons to the atom. We are comprised of emotional energy encapsulated in a physical shell. And just as atoms can bond, it is possible too for humans to bond, to share a charge and create - facilitated communication.

Just as a molecule of water differs from the atoms of hydrogen and oxygen it is composed of, so too it is with some facilitation bonds. In becoming a water molecule the joining of the two elements locks the oxygen off from experiencing its own true nature as an element. What is created is not the expression of an individual’s sole thoughts. At its most primitive/dependent the facilitatee is held captive to the world of the Facilitator, his knowledge and thought boundaries.

To bond is not a sin. To stay bonded is. The end goal of all facilitation should be to free the communicator/facilitatee to experience his sole self as a communication.

Developing individual consciousness is key. Individual consciousness is assumed for neurotypicals, but for the bonded soul development of the self boundary is very much an issue of skill development.

How does one develop individual consciousness? Individual consciousness is most easily developed through body awareness. As a young child my OT used something called sensory diet, a brushing of my body, to wake it up. It was like putting on a cold suit. It only lasted for a short time, never long enough to for me learn from. For me, the answer lie in water. The pool was a birthing for me. To immerse myself was to be born as a form, at once overwhelming in realization. I know only my own experience. For others, something else may work better, or faster. Swim is a long process. Form escapes you in your dry state. It took many dunkings before I carried me out of the pool; at first, for just a few minutes at a time, then intermittently on chance my sense of form would appear for brief period then be lost again. Eventually, I learned to create the feeling of self. In my bed at night I could produce my body by concentrating on it. At first, I was just a floating head, but slowly my other parts materialized in feeling. Now I am always aware of my body, but it is like living in a brick. I drag it around rather than flow in ease. Only in water is my movement registered as smooth. There it feeds back to me in answer. But, I continue to improve. It is the most important thing I can say.

Independent choice, as an assertion of self helped me too. Permitted choices are a wonderful tool .... and the ability to say no. Too often we are handled not interacted with, treated as the objects we feel like.

In facilitation, we choose our captors and hopefully they choose to free us. Water is essential to life, but oxygen is best breathed.
.

Last Blog Before Graduation

2010-05-26T13:56:00.000-07:00

I am pondering the cyclic nature of things today. It is my high school graduaton this coming week, an endpoint of achievement I once thought impossible to meet. It is an end, but also a beginning, one that has no direction planned. What does a motor handicapped autist do with his life?

There is a song, "Don't Blink". It is a country song I listened to yesterday, and it tells the advice of a 102 year old man about how quickly life passes. Life is its own journey and we are just passengers on the ride, a predetermined route mapped out by us in another form of consciousness. I sometimes wish the element of surprise was not a soul expanding necessity. I wonder what I've planned for myself, what joys and disappointments. I stand on the abyss that is the unknown of life and my only choice is to jump. I pray for soft landing.

Chicken and Egg - It Is the Same

2010-05-20T16:52:00.000-07:00

Tom Smitth writes:
So you say you're not totally independent yet? Te... So you say you're not totally independent yet? Tell me, how is one to learn independence using FC when even the communicators aren't supporting full support FC? First things first.

We have plenty of independent typers and that still hasn't done the trick. In fact full support FC was dropped by the FC community to support Crossley's FCT which is teaching independence. We got some independent typers but no FC.

I am capable of independence physical in typing, but I do not want to let go of my Mom's presence as an emotional support. Last week, Carol went to video and my ability evaporated when my fears of looking retarded in public were remembered.

To read you, you imply it is a process of acceptance one then the other. It is not. Like the chicken and egg it is - the life revealed proves the egg's content and which came first is really unimportant. Independence lends validity to all the steps preceding it including full support. But too, it is a growth process, one I am not sure all are encouraged to embark on. To see emphasis within FC placed solely on the process of support without inviting occupational therapists as copartners in it highlights this. FC can take many guises in practice if not theory. I do not undermine the value of anyone's efforts by trying to build skill understanding and practice for issues faced in typing.

Full support is both with value and dangers attached. A realistic perspective is necessary to growth in acceptance of FC. There is an understandable reason for the danger. For some, shared consciousness precedes individual consciousness. It is not something to be ashamed of, or something to be hidden, or denied. It is a necessary step in the process of growth for some and should be treated as such and assistance should be given in developing the self barrier. It is a learned skill like many other skills unseen by the neurotypical system.

To come together as one voice, is difficult but necessary and no one should be left behind. Mass progress is possible in both skill and attitude gains with shared knowledge and effort. OT is a means.

My last hurdle is one of self exposure. In doing this, I help myself as much as others. I am not equipped to do it alone, so I ask for help from others like me. But I am a start. And like chicken and egg, any start yields result.

Mike

Claudia's Question - How do you learn best?

2010-05-13T12:20:00.000-07:00

Claudia asked : In non-technical terms, how do you learn the best?

The art of learning is a process of learning all its own. Like a giant game board it is - How to do it depends on one's position in play. But there are rules of fair play. 1) Always limit your moves to one at a time. Teach/learn only one thing at a time. 2) Use established routes when trying out new gear. Teach in ways the learner already understands to provide new information. New modes/methods of learning require old knowledge to test reliability. 3) Grading is teacher not student performance related and 4)No is an acceptable answer.

I am an evolving learning process. Currently, auditory is my favored modality for intaking information. Performance that omits intricate motor chains or orientation is preferred for response. I still keep to one thing at a time in lessons, but what is an "unknown" is fewer in number.

At start, I had to alternate my attention by sense, one then another to learn. Movement oriented response was impossible. We did a lot of learning that only became evident much later in time when my means of response performance finally developed. My greatest aid to learning has been OT related gains.

Making one listen is impossible, but we all have our own unique curiosity and passions, even motivations. Mine were escape and my string. Motivation is everything. It fuels effort. And effort results in aha moments for teacher and student which can be built upon. I am a huge construction project managed by my Mom. To understand my architecture, it is a better question for her. In some things even my perspective is limited.

The Next Step in Facilitated Communication is Independence

2010-04-15T13:07:00.000-07:00

I have been thinking. I do not understand why facilitation is not viewed as a valid process to independent typing. I do not understand why training focuses on the facilitator rather than the facilitated. I have made great progress recently based on simple practice skills that impact variables in typing. Others who have gained independence must have equal or better insights. Those who facilitate too must know their own experience. Is there a place to share the technical issues and solutions, not to typing facilitated, but to gaining control independent in typing? I am willing to share what I know, but as one experience I am only a half truth. I think we should come together to brain storm issues and solutions in training. Isolating variable skills will enable the learning of them. We can learn to do the impossible in pieces. We can help each other as no trainer alone can. OT's can decipher and build the activities based on our descriptions of problem. A path can be plowed to indpendence.
What can not be achieved directly can be indirectly done: A styllus saves crossing midline,a block or chip offers point of reference,a board's background can move one directionally, neck cocontraction focuses sight, arm stability focuses movement. There are so many tricks and bridges - finger splints, weighted wrists... I want to collect and share them all as a blog of its own. I think it is time we speak to and for each other to help one another and those without a voice. It is time we direct our own validation by bringing more and more of us to independence. I am still in process, but this action of exposure is its own bridge to further my independence. I want help from those whose voices are but a whisper now. To find a voice requires sharing. It is its own first step. If anyone will take it with me please let me know. My email is mrhaoh@yahoo.com.

Mike

Motivations of An Autist

2010-04-05T07:16:00.000-07:00

In Psych class we are studying motivation and needs. Maslow's hierarchy is presented as a neurotypical model. It got me thinking about my autistic hierarchy of needs. Initially, I was wholly internally motivated because the outside world made no sense to me. Primary needs I understood first. My needs were seen through a primitive and often inaccurate schema of understanding. Kitchen meant food. Car meant drink (because a ride often produced a drink in process). Motivation had nothing to do with planned interactions with the world. Everything was a matter of random gifting from God. In that sense my hierarchy differed from Maslow. Maslow's hierarchy seems premised on the concept of people having some understanding of control over their needs. In the absence of control, needs take on a different meaning and importance. My first need was companionship. Odd you may think for an autist? And I would argue that Maslow's attachment is an entirely different need, one based in physical not emotional. As a sensory sensitive child attachment as physical was an aversive to me. A hug did not translate to safety and security, isolation did. Attachment was not a need, disattachment was. Esteem was likewise an impossibility because I experienced no sense of a physical personhood. Cognitive preceded esteem and esthetic preceded cognitive as a need. The act of being took all precedence in the active sense of experiencing the moment and intrinsic beauty of God's creation, whether it be the sound of raindrops or the deep colors of the world's tapestry.
When forced to intereact with the world, escape became my primary motivation; escape back to the higher valued goals of esthetic being and the warmth of companionship I found with God. You may question my goal of companionship with God, but I assure you God was there with me in my autistic home. He does not abandon us at birth. Rather, we abandon him for the distractions of the physical world. I find it interesting that Maslow puts transcendence at the top of his chart as being the last and hardest for us to achieve. My experience is it is a gift we ignore not a goal/need to be sought.
My life focus is therefore different from the start. God is my motivation; living out his purpose in life for me. His purpose is sometimes clear, sometimes elusive. A cognitive understanding of life is a prerequisite to living it with intent. But I also believe we live out our purpose regardless. The process is for our benefit/advantage not God's; the being is his benefit, in all its aspects. My motivation is God's experience through me; it is an act of love to live it.
The only true rejection of God is suicide as a rejection of God's living through you. Suicide stems from a lack of emotion,not depression, but an apathy for life sustaining. That may be counter to prevailing theory, but it is mine. Often suicide is misunderstood as an escape, but it is not. To self end is to circumvent the purpose of a life that requires a redo for individual soul advancement. I just know it,is my best explanation to you.
But to finish the question, in practical every day, Mom is the motivation and director of life's plan. I now cooperate, but I still have a way to go in self seeking motor action. Cognitive I see as offered in opportunity; to learn I love as an extension of being. Self-determination I seek in all its meaning of personhood. I work at it on my own, tiny steps at a time I make that need to climb a mountain. But it goes back to a love of God's gift of being. I hope that makes sense to you.

Response to Comment on Neurodiversity as Defense Mechanism?

2010-04-04T17:42:00.000-07:00

Ginger Taylor commented to say:

Mike,

So refreshing to see this perspective coming from someone with ASD. It is something that I have considered, but frankly, don't write about as I worry that it will come across as condescending and insulting to adults with autism who identify themselves as ND. But as it is a condition that results in impaired perception, might not the opinion that the dangers of autism are overblown and that is is an alternate cognition also be a result of impaired perception of the true realities?

I spent some time arguing with ND's on the Huffington Post this week, trying to get across the point that functioning level has absolutely ZERO to do with the value of a human being. One ASD/ND woman argued that she was her autism and hating autism was hating her. I argued that autism was a result of an organ dysfunction, that she was a soul whose brain was not serving her as well as it could, and that she was not her cognition any more than she was her sense of smell.

http://www.huffingtonpost.com/liane-kupferberg-carter/autism-time-for-civility_b_521521.html?show_comment_id=43837448#comment_43837448

She just wasn't seeing it. Or chose not to.

This quote:

"I have long described myself as a whole soul imprisoned in a broken body."

...much more succinctly encapsulates the verbose argument I was trying to make. Thank you.

And it is truly a statement that is true of all of us. Our bodies are all broken in different ways, and all of us have brains that distort the truth in life in some way.

You are wise to see that an embrace it in the midst of this discussion about the value of people with autism.

As today is Easter, I will direct you to a series I wrote called Autism in God's Economy that speaks to the value of those with autism, and the fact that it has nothing to do with their functioning level. It is in the second installment. This is the link to the first:

http://adventuresinautism.blogspot.com/2007/04/autism-in-gods-economy-least-of-these.html

I think that the causation issue is also something that should be completely dissociated with the value of those with autism. It doesn't matter if it is caused by genes or vaccines or medications or mercury or sharks with frickin' laser beams on their heads. People with autism are valuable. Period.

I have a sense that if these principles were embraced by those with autism, then defense mechanisms would fall away because they would realize that there is absolute nothing to defend!

People with autism have value because they are people, and people have value. And people are valuable regardless of what they can do. So what is there to defend? There is no need to justify ones self or talk people into seeing them as valuable for what they can do that is special.

I feel like those in the ND movement have fallen into a big trap of self-justification where none is needed.

Ginger,

Half truths are a dangerous things and you proffer one here. The truth is autists are as diverse in cognitive functioning as neurotypicals, who range from mental retardation to sheer genius. What is unique about autism is that genious can be shrouded in a cloak of retardation appearance wise. It is why Bill suggests to always presume intelligence despite outward appearances. One's cognition is only as good as sensory reality presents. Living in a funhouse of perceptual horrors would frighten even the most astute mind. To say it is my brain serving me less optimally that it could is a fair statement of sorts, so long as one understands it is the sensory component not the intellect perse that is dysfunctional.
The mind as soul is an interesting concept. Its separation is not understood by experts let along laymen. How you perceive it is your own truth. We each have value just as we are, NT and AS both. In that we both agree.
Do you celebrate your gifts and talents as gifts from God? If the answer is yes, why do you resent an ASND from doing the same. AS holds many secret gifts if one but looks for them. While they are unimportant side effects, they are nonetheless gifts. The ASND that does not see the value in a naked soul, may see it in his/her gifts. I do not know about you, but I will take anything that helps, self-love over self-hate. If the world did not revile the autist then I might agree with you about needing no defense. But our personhood is attacked as alterable from the moment of our identification at autistic. Instead of developing autists to their full potential as autistic people, society seeks to erase all trace of autistic character. To the extent we process differently, neurotypical learning techniques are misplaced with us. How much more easily could I have succeeded if someone early on worked to the special needs of my system in teaching me. You would not like being taught in Spanish if your only language was Chinese. I would argue that the impaired reality you refer to would be far less perceptible if you (as teacher) at least had a rudimentary understanding of Chinese at start of the process. From here to there is a matter of start point.
Thank you for your valuing me for my soul alone though. It is a bridge that bypasses the perceived need for genocide physical of the unborn anyway.
Mike.

Neurodiversity As a Defense Mechanism?

2010-03-09T10:43:00.001-08:00

When I first thought to write to the issue of "Defense Mechanisms in Autistic Culture" as a Psychology class assignment, my mind was focused on the typical stereotypic behaviors that so often mark our labeling. But Mom came across an obscure blog that claimed the entire neurodiversity autism movement is a product of Freudian defense mechanisms(Mitchel, 2009). Specifically, he discussed denial, displacement and reaction formation . The denial is seen as our refusal to acknowledge our defectiveness or brokeness. The displacement is our lashing out at our tormentors, the curebies as they are called. And the reaction formation is our embracing ourselves as being valuable human beings. I can not speak for others on their motivation for promoting neurodiversity, but I can speak to my own motivations and defensive mechanisms play no part in it. I have long described myself as a whole soul imprisoned in a broken body. If I am guilty of denial, it is in not accepting that as a death knell to my personhood. To say we are differently wired - we are,with cross wirings and burnt out connections and alternate pathways just to name a few. If it is reaction formation to love and accept oneself with one's limitations then I wish it for all the world, and most especially for Mr.Mitchel. I don't need to justify the heartache of autism, God does. It serves a higher purpose and that is enough for me. All life is valuable in God's eyes, just as he created it.

Lenten Reflection

2010-02-17T09:49:00.001-08:00

I am in the mood to talk about God today. Time is passing quickly until his return. I sometimes wonder at his continued interest in so disappointing a species as man. My own disappointment colors my perception I know. How is it we have so much and yet do so little with it? You speak of Haiti, but it can just as easily be Africa, or India, or Afghanistan. I think we are a crazed species, self destructive. Such a disparity of action we are capable of. We are our own polar opposites.
I watched NOVA last night and listened to the expert describe the effects of water fracturing on ice. A tiny trickle becomes a river, eventually causing huge pieces to break away from the glacier. Is that the same effect with us? What starts as a tiny disassociation from God becomes a river of divide, until our entire underlying soul structure caves in and breaks apart.
Today is Ash Wednesday, a significant day within my religion. It is a day to reflect on the sacrifices of God and our own relative insignificance. But today I can only see the significance of our selfish choices. It is not what the day is assigned for, but it is the path of my thoughts. If small acts can so change the world negatively, then could they not do the same positively? To do something of sacrifice is customary of lent. But I want to do actions that are positive on the world instead for lent. I know my course of action. It is between me and God.

A New Environment - One You Can Create.

2010-02-03T11:31:00.000-08:00

Tina writes:

If you could, would you please share with us your thought of what an environment that favors autists would be?

Tina's question is a hard one because each autist is unique as to need. To give me what works for the visual learner is to give me nothing of use at all as example.

But attitude might make a huge difference of equal application to all. It is a huge deterrent to our even trying sometimes. Now I do what I do for me, but for many years my eforts at learning were Mom directed. To be other motivated is a horrible way to live. What was important to me was ignored as unimportant or unworthy. I am of limited interests, but many autists have intense passions that can be used to learn with. Reading, Math, English, Art, even Music can all be tailored to one's passions. Imagine to actually have learning matter as something of interest to you. Imagine to match things you liked or sing to speak about something you love. When little my favorite speech session involved using my string as a tug of war to bring out a sound. I like speech now because I practice phrases I've chosen as important to me. How many of your lessons are child interest directed, not neurotypical child,individual child? I know I offer only one example here, but trained learning is a huge part of most autists' lives. It has been largely my whole life for years. To develop motor coordination and skill in the pool is something I'll gladly work on everyday.

Dr. Reinson is now helping me further my independence in typing from Mom. I love her enthusiasm. She spent last session playing war with me with weighted cards, had me scan and stack, and use my pointer finger to detach pieces from a velcro board. The embedded skills I use to type. It is a fun way to develop the motor I need, and the anxiety over the actual typing is not there to interfere with the learning.

Kick me for suggesting any environment could actually be favorable to all autists. An environment rich in the cues we each need would be best. I am an auditory learner so sound is important to me. I am a smell distracted individual, so smell limited to relevant information is best for me. To smell my dinner or coffee brewing in the morning, that is relevant. The antiseptic wipes in the new speech room I would be well rid of. For me,to smell is to resort to an impulse response, one I can not tame all the time. What is your addiction of choice? It is a bit like that. How we respond is key to our ideal individual environmental needs.

The Future of Autism

2010-01-27T09:31:00.000-08:00

Questions are running through my mind. Are we as autists truly brain damaged? Or, am I the beginnings of a new species of man, not unlike Cromagnum or Neanderthal. If 1 in 150 are being born with my autistic wiring, is it not a matter of evolution at work, whatever the underling causes or factors? Is autism a cancer on society or the next saving adaptation? As the world devolves, with ever increasing catastrophes, will autism have a place in it, or be one of the casualties of it? These are the thoughts that occupy my mind today.

I liken autism to an alien race, with benefits and disadvantages both. I see the deaf culture and think the disadvantage of it is in living in a speaking world. Like that it is a bit with autism. Will there come a time when environment will favor the autist? It is a selfish wish, but my tired brain hopes so.

Psych 101 and Then Some

2010-01-20T12:14:00.000-08:00

I have started my Psychology class and I am so excited to think I will be able to learn more about how the brain and body interact. Perhaps there are accommodations I can try that I have not come across yet. To accommodate and adapt for my deficient systems, that is my goal. Today I learned how the antianxiety drug helps, its functioning neurologic. Keys and locks at synapsess is a a great visual of it. I love the book that way. It speaks in pictures, something an autist appreciates. When explaining something, a picture description moves the information straight to memory for me. It is an automatic filing that requires no further translation. Abstract words need an anchor to access them. How do you process love? Is it a sensation you feel that comes rushing back? Or a picture concrete of loved ones? My Mom says music sometimes pulls up memories. Like an old song can put her on the beach complete with the smell of suntan lotion and salt air. How about smell? Does smell retrieve any memories for you?

Autists' memories are tied to the senses in same way. Most autists are visual filers. But it may depend for some on what sense was most functional at the time. My earliest memories are all tied to scent. My most recent to picture movies. I create them in my mind with silent screen word captions as an easy cross reference.To hear a word is to see it. Conversations are reading exercises in my mind.

To act is another process. It requires transfering the written word to oral sound in my head or an outside oral sound at outset. I can't move to follow still picture instructions. Still Pictures do not translate to movement in my sensory system. To recall vs. perform are two very different functions for me. For me, moving pictures is key to movement. For another just pictures may be enough to move.

The point is this, to know the sensory filing preference of an autist is to be able to help them. Cuing is everything. It is the equivalent of speaking a common language. We as autists can not always learn to speak your language, but you can learn to speak ours.

My Name is Michael

2010-01-13T11:43:00.000-08:00

I want to talk about my name today. My name is Michael. It means "who is like God". I doubt my parents knew this when they named me. For them it was a way to honor my great grandfather. But the name is of significance to me as reminder of my source as divine. Yours too.
How one views things affects God's response. Where love is at source, a love response is always given. This does not equate to a yes answer to one's prayer. It is only the kind of response, as supportive, that can always be counted on. I cry alone, or in the comfort of others. I rejoice alone, or in the company of others.I find internal strength I did not know I possessed. A stranger offers the correct response in the moment. These are all God's answer to loving prayer. It works best if offered as an altrusitic feat, not said for self, but out of love for another. Love is the fuel of prayer. It is the necessary ointment that anoints the connection. Without it, transmission is faulty. To pray out of love relates the prayer to our source. It is love as conduit. To pray for a stranger then would not work unless the prayer is offered for love of God. Then it is the highest form of prayer. Not for their purpose, but for God's will lived out in a loving manner. I am a prayer machine. I am a prayer answered. Praying for others loved and out of love of God is the first step to having your prayers answered. We are each God's answer to prayers for another. Listen to your heart and hear his call for answer. Miracles are within each of us.

New Year's Resolution

2010-01-04T10:27:00.000-08:00

My goals for the new year seem a good way to start. Number one is don't eat inedible substances, a rule I already violated when I tasted the Christmas tree this morning. Have you ever thought something smelled so delicious that you just had to taste it? Well, that was me with the tree. And it failed to live up to expection, not to mention getting Mom and Dad miffed at me. Why do I, an intelligent being, do such things? Because instinct trumps thought process in order of application. Some times instinct can be a good thing. I know a bad person just by their touch. But for me, instinct turned impulse is a bad thing more of the time. To bolt across a parking lot because the restaurant sign speaks to my too empty stomach, to have smell direct action ill-advised, to have anxiety override your reason: these are the impulses that destroy my functioning as normal-looking and place me in dangerous situations. It blocks my development of selfmanagement skill and my independent functioning. It is a life of telling myself to stop and think, and think again. I am an idiot savant subject to uncontrollable impulses. I need to train myself to yield. It is my primary goal for this year.

Your Communication as a Lesson

2009-12-04T16:10:00.000-08:00

You are all doing well I hope. I have been busy learning about neurotypical communication. You are a complicated species whose motivations I am just beginning to understand, so driven are you in all your actions by emotion. It is foreign to my hierarchy of need. For me need is food and shelter and questions resolved and affection too. But I do not feel the need to commune my emotions as you do. Your communication is largely emotion based. The joy I find in communing in just being is the same joy you seem to get in communing in emotion with one another. I asked my classmates to explain but they did not. I do not feel it, the emotion, as you do. Love I know and anger too, but the subtleties elude me. I do not appreciate the difference in emotional tone as being anything decisive. The content is so often hidden in the intensity of what I feel. It is like an angry sea that sinks what should be a floating boat; the purpose of the boat, lost to the waves. I am seeking answers now to things I don't mutually experience. How do you describe a sunset to a blind man. I am as the blind man. That is my task of learning.

Ask me a Question from Donna - Re: Typing

2009-10-12T10:00:00.000-07:00

Donna wrote me a comment:
Mike,

I had the pleasure of meeting you and your mother in the hallways of your college a week or two ago. She shared your blog information with me. I have a son who is your age and who is also an "autist" as you say it. I like the way you say it.
I have been reading him parts of your blog and he appears to like to hear them. He also liked it when I read the book The Mind Tree to him and you seem to have a lot in common with the author of that book.
I think that he is about as verbal as you are, but you have a much much more useful writing skill than he does. You are also very eloquent.
I did work with him for awhile today trying to see what typing skill he has and was pleased and surprised to find that he is less intimidated by the keyboard than he used to be.
We were able to type some simple sentences together. I asked him a question; he answered; I asked him to type his answer; we sounded out words together sometimes but otherwise he found the letters on his own.
My question is this: Do you have any suggestions for moving to a place where he can type his own words without my choosing the topic (and the answer)? Of course, he may have nothing that he wants to say. Still, I feel a renewed sense that this method of communication has potential for him. I am having trouble deciding how to approach this and would really appreciate any suggestions you could give us.
Thank you,
Donna

Donna,

You make me very happy today. To be able to make a difference, it means a lot. I can tell you how I learned to do it and what obstacles I face. It is a good place to start and your son can help you too to know whether he does or does not have some of what I face.

First, you need to understand, words are unnatural for autists. It is like a translation, one language to another for us. You as a neurotypical see an immediate use for words. But me as an autist, my wiring of brain works through pictures. Words are wholly inadequate to describe that mind set offering. So it takes a while for us to develop a sense of need for them. Too, there is the translation learning and filing that has to be developed and take place in our minds. Me, I've adapted by sticking a word spelling picture in my mind dictionary.

And, there is the emotion of it. I was afraid to share my thoughts would take away from me, from who I was. It does not. But you may want to tell your son as a precaution to reassure him in case he too has what was my misunderstanding.
I learned to type with spelling words. Sharing is emotion based and it was too much for me to do at the start, too anxious it made me.

Each has his own unique issues to overcome in typing. For me, I had to first share, then form my own consciousness as a separate thought process. I can read your thought through touch so I had to form a block to separate our consciousnesses.

Next, there is the sheer physical barriers to typing; it is a motor movement issue.
For me, to initiate, cross shifting, and to stop to hit each key was all a separate series of learning. To move to initiate my movement I used to feel off Mom's heartbeat. I shift with my mind; a jump with my mind moves me across center of the board now. It works, but that cue is up for more refinement. I am good with pulling back to the start point, but it is a problem for some I know.

If your son has his motor intact it will be a much easier task for him to learn to do it. Just prove it useful to him. For example, Do you want pie or ice cream for dessert? Me, I want both, but it was not in the question. So "both" becomes a useful typing word.

For me, FC helped explain my misunderstandings of reality. It opened up answers to questions I didn't know to ask at first. Finding the questions that need answers is a process of accidentally tripping over them at first.... Until you see them, and then they start to appear for you everywhere.

I know FC parents and friends read here sometimes. Please ask your FCer's if they want to add for her in answer. I will post your comments here for her. Thanks.

Mike

P.S. Mom says to tell you if you contact her at college she will give you different boards to try. Each requires different skill set and/or helps with different obstacles.

About Ask Me a Question from Jennifer

2009-10-01T10:45:00.000-07:00

Jennifer asked " I am wondering... I have a 5 year old that was given the label pddnos. What ever that really means. I think it means they have no idea. my son is non verbal. He speaks a little to get his needs met. But not alot. So I guess my question is in your opinion does he understand the things I am saying at all? is he just ignoring me? Does he actually love me?? All harsh and unintelligent questions maybe but autism confuses me. I dont understand. which is sad cause that means I dont understand that part of my son."

Jennifer,

He is 5. You will grow together. When I was 5 I did not understand the meaning of words. At the age of 20 words are largely all I have to display my intelligence. I will ask Mom to find and post for you what I wrote so far on my first understandings. Maybe it will help. Time aids development, as does understanding. Learning about sensory integration may help if he is the same genre autism as me.

Does he love you? Of course. He may have difficulty as an autist in the world environment; maybe a poor sense of self and others even, but love is our source. Do not get discouraged. I only learned to be in the present for hugs much later in life and my mom says I am a great hug now. Love speaks without words or even touch sometimes. Trust in yourself to convey it and he will receive and reciprocate it in his own way and time. You are a good mom to want to know him as he is.

Mike.

Repecting and Preserving Personhood

2009-09-30T11:20:00.000-07:00

Bill recently wrote an article for Huffington Post, "Autism: The Last Civil Rights Movement" that caused an unexpected response,at least unexpected to me.

Why do people associate respect for the human condition of autism as equating to the reprehensible refusal to treat that condition to develop it to full personhood? The two are different issues entirely; The first, addresses a means used to reach the ends, the second, refusing to address an ends. Why is cure, which equates in my own mind to a denial of self, the only answer offered by so many. Are they so blind to the child they are given as a gift, the potential of the child they are given that lies deeply hidden? Why are they so quick to want to trade that gift for another?

When I had my car accident and coma there was another girl on the hospital unit who my mother still frequently speaks of. Her accident was to her front temporal lobe, the area of the brain which controls our personality. Her mother was in grieving, but too guilty with her feelings of loss, because her child still stood physically before her. Only it was not her child. The girl had a new personhood because of the accident. Autism is like that. Treatment improper can rob one's personhood. The shame is that you celebrate it, oblivious to the loss. You fail to see what that woman saw in recognizing her lost child; NOT the undeveloped autist, but the never to be seen developed one had treatment taken a more respectful course.

What Bill asks is that we honor and develop the person present in respectful manner, not trade them in for a new model of false creation. The only thing that is worse than dealing with the binds of autism is dealing with the binds of a false persona. It is my opinion.

http://www.huffingtonpost.com/william-stillman/autism-the-last-human-rig_b_267266.html

The Process of Communication

2009-09-26T17:07:00.000-07:00

I am sorry for my absence. I have been taking a college course in Communication and it is a lot of writing for me. It is a lot of learning too, about the neurotypical communication system. It is a process foreign to me. Why do you not teach it to us as a class like this?

Did you know eye contact has a word meaning all its own? It says I am listening in nonverbal language. It also cues the speaker that I want a turn to speak when increased in intensity and time. Why don't you tell us this directly? Then we can in tell you directly why it does not work for us as a process. That would be true communication.

My process is entirely different. I don't hear a word as a word. I see a word as a picture then translate the meaning to a word. To say it is raining cats and dogs ellicits that picture in literal fashion, which then gets translated down to downpour. I hear tone and volume and pitch, but I can not process it simultaneous with sight. I can alternate, but it takes great energy to do it. What you do simultaneously, I take in as a turn taking process. I am learning some accommodations though. If I am preprepared with my own agenda or fact background I can do a critical analysis of what is being said to me. It takes out a step that takes attention from the speaker. It makes it unnecessary for me to formulate the thought that is me. To focus on me is to ignore you. The critical analysis provides both in relationship but as one step.

It may explain the success of the social story this prestep set up. It may be useful in structuring meaningful interactive conversation, autistic to neurotypical as well.

Typing to the Music

2009-08-18T15:22:00.000-07:00

We are trying something new today. Mom is having me type independently to music. It works like a heartbeat. To the rhythm I type each letter. I can tap my hand to the beat so I use it to type instead now. Mom is full of good ideas sometimes. I am able to write much faster this way and I get to listen to music while I work. Mom is smart, but I know too a good thing when I see it. Hunter says I can use music to build motor chains. How good an effect from something I love.
A slow song just came on the radio and my speed is now a slow dance, but it is still my motor at work. How long before this song ends? Because I am done.

Motor and Words

2009-07-30T17:44:00.000-07:00

Most times I understand everything that is said to me. Moving to the words is another matter. For me, words are like tiny motor cues. But not all words have an action. Words like "stop" for example. I can not act to it. I need to hear or think an alternate action to stop. Or "Hand me the butter - I have to picture butter in a hand moving to act to it. "Get" is a tough word for me to follow too. It originates from me to a point, something I have trouble with. I sometimes focus so much on the "Get", that I lose the what I am supposed to get. "Get me a fork", Dad said the other night and I got lost in movement attempts to do it. It makes it look like I don't know fork when I do. Only sometimes I do lose a word. Its function I know, but the word itself escapes me. Only it is confusing for a few seconds, but then I see it, the word, written in my head. To read the word is to know it again. It is something I learned to do, to picture objects in written form, not as an object in my head. It is how I learned to read when young, by words on objects. So I started to do it in my head that way. It helps to ease a hiccup of thought.

An Indirect Approach Will Still Get You There

2009-07-23T10:19:00.000-07:00

I heard my voice today. In speech they record and play it back to me. It is gravelly, gutteral is what Mom calls it, but it was also clear to hear what I was saying. I am amazed to hear me speaking words. I move to talk along with me. It is me initiating my own speech. How stange and wonderful it feels. How odd a way to do it. But if I can do it this way then why not another?

The other day I swam for the first time using my upper and lower body together. I cheated at first, using my walking across the bottom of the pool to get the motion started. To continue on into what was over my head is what got me swimming. It is another trick over my body. Only I can feel my excitement at the accomplishment.

The key to autism is often figuring out a way to do indirectly what can not be done directly. Once achieved the act overshadows the means and a whole new I can do attitude arises which sometimes eradicates whatever blockage existed in the first place. I hope this is what will happen with my speech. I know this is what will happen with my swimming. I can not wait for my daily pool trip!

Aletha's Question - Toileting

2009-07-19T18:11:00.000-07:00

You ask a question I can not answer as to another. Each has the same problem, but the underlying reasons may differ. To know the reasons answers the question of how to teach to it. For me, I honestly did not know when I had to go. I could not keep track of it and my other senses too. To pee was a lifeline for me. To produce something told me I existed. But, I think another autist might look at it the same way I viewed sharing ideas, as if they were giving up a piece of themselves to do it. Poop is especially like that I think. Like everything it is individual in odor. You can mark out a world for yourself in poop. We are territorial animals at our core. Space is a big deal for most autists. I used my urine, not feces, to mark my life. It soothed me, my own smells. I wet my bed until late into my teens (not what you want to hear I’m sure.) I was day continent late too, by age 10 or so. But for me it was more an issue of my using it than training it. One of the first lessons I learned was that pee could rid you of people's expectations. The program they used to teach toileting sat you on the potty until time ran out or you peed. Then they worked you; how long I don’t know, but I knew it was for a set time. I was task avoidant, Mom calls it. I learned quick to wait, then make myself pee at the end of the time for sitting. Time for work was instead used to clean me up then. They fed us lots of juice so making myself go was easy.

Peeing is a pipe in your stomach that tickles. To make myself go I don’t feel the tickle. But to have my body declare it sets me off in to uncontrollable giddiness. Happy I was not. I pee a lot of my own making to avoid the body overload. Mom says I ask all the time to go to the bathroom. I need to go, but not for the reasons you go. I go to stay empty. You go when you feel full.

Poop is harder. I used it to scare off workers some. I used it to play when bored. I used it to stim. I am not alone in playing in poop I know, but it was a childish choice that made me look very bad. Not everyone’s problem is a bad choice though. Many don’t get the connection of putting it in a bowl of water. Some may find the flushing aversive. Sitting on the toilet is without ground; to sit backwards and hold on to the seat back would be better. My cousin learned with a musical seat. I would have liked that one.

Poop is crap to you, but it may mean something else to him. It is the best answer I can give you.

One Soul

2009-07-08T14:21:00.000-07:00

I am afraid to speak to my heart. I am afraid God will be disappointed in my efforts. Placing myself at risk for ridicule I do not fancy. Polite conversation needs to be at end for today. Polite conversation is really an introduction to something far more important.

People speak of savants,in art, music and even synesthesia. There is a form of savant that is as a connectedness of soul. It happens as a product of those with extremely broken bodies, not just autists, but all forms of disability.

The body encapsulates the soul. The soul hides itself as means of developing self. We are one soul united; hidden in each of us. “Pieces” is not the right word for it. It is apart, but also a whole, a concept beyond our experience and understanding; like a pearl necklace, individual beads on a single strand. The strand is our connectedness, the beads dependent on each other to form the necklace. To lose one is to lose all. This is as it is with souls. Individual is not individual at all. Those with broken bodies can see and feel the strand that binds. We sense our oneness and through the connectedness of pearl to strand, the pearls' individual natures as well.

Love is the strand. To experience it may be to temporarily realize the connection in even the blind. You have experienced it I am sure: to know a loved one is in trouble, to think or say the same thing simultaneously with another, to share a special moment in a bubble of time. You call it intuition, but it is love as our connectedness that accounts for it. It is love that opens our eyes to the connectedness; like seeking like, like raindrops to the river, back to the source it flows. God places mirrors of the soul in everything to act as silent reminder. Look and see for yourself.

Motor Response and Skill Knowledge

2009-07-08T08:11:00.000-07:00

2008 entry

Motor Response and Skill Knowledge

My body works is hard to describe because it changes day to day, sometimes minute to minute. I carry my string in my pocket now a lot. I don’t need it to tell me I exist anymore. The earth beneath my feet I register now. Feeling my body in space comes in bits, especially in water. Last week I just lay on top of the water enjoying it. Hot water makes me feel me more, but cold water is better to start movement. Feeling and moving must be two different things. I have trouble keeping track of movement, not just where I am, but the doing itself. To feel my arms I lose track of my legs. To kick and move my arms is impossible for me to keep up in the pool. Only Mom counting strokes helps sometimes. It is like she does one and I do the other then. Doing movement is different than monitoring it. Just doing is hard. To have to coordinate the top and bottom is impossible for me right now. My body needs to be the same on both sides to feel right. When I was little, I had to have one of the same thing in each hand and do half and half each side of my body to feel balanced. To an outsider it might be viewed as a compulsion, but for me it was literally a matter of balance. How would you feel to walk around with one shoe on and one shoe off. It is a bit like that.

When people look at an autistic child they look at what he can and can’t do. Sometimes the cans and can’ts fluctuate. The body resources I have to work with can literally change. You would not try to do a detailed analysis while very tired. For me, life is a detailed analysis. Sometimes our systems are just tired. Insisting on repetitive performance is not always the best measure of acquisition of concept. Motor response is not an accurate predictor of skill knowledge. It just tests motor movement response to skill knowledge.

Let your heart lead you in your teaching. If you think there is something to be learned in offering the information, even with the lack of verifiable learning through performance of skill, do it. You never know what is being taken in by the mind. Long after, you may see it revealed. Exposure can’t hurt and it may very well help.

Cueing Motor Action

2009-06-29T04:10:00.000-07:00

A recent entry 5/2009

I am so happy today. Why is that? My motor in speech is waking up I think. I am speaking on my own motor initiation more and more. Motor cues are essential to me. They govern my functioning. Omit a cue and I am lost. I use all sorts of actions to cue me; things move, people too. Only some of the cues I can control. I can choose to use or not use them.

I can not use a visual to cue my motor. They recently tried to help me initiate in speech by having me read my words. I had to translate their cue, the written word, to someone reading it to me in my head, in order to speak. I am in the minority that way I think. Most autists can use visual to cue motor action I think. But for the auditory or kinesthetic autist it may not work.

I can use visual to cue content information though. For example, the tag on my underwear tells me which side is back. But, mistakes in association are possible.In the case of my underwear, I put it on my head once because I saw a different style tag that resembled a shirt tag I had. Cues are only good to extent they are consistent and occur in many environments. My mom accompanies me everywhere so she is a great cue source. I can use her actions to initiate my own. Now, I try to pair my initiating with her. Sometimes I even beat her now; all initiation my own.

Cues don't have to be related either. My garage door, which is just beyond the bathroom is my destination when I go to the bathroom. I can move to flee so I flee in the direction of the bathroom when I have to go.

What I am telling you, all of this has changed and improved with time, but it is where I started.

Done is the hardest cue for me. What is finished? Am I constructing or dismantling? At the half way point it often looks the same. It is hard to keep track, at least for me. I needed an added cue to work as a reminder. Leftover. was hard for me too. I needed somewhere to put the extra pieces. It makes no sense, I know, but to the motorically challenged it does. I am done now so I will hide my board or I will feel compelled to write more.

A Perceived Lack of Understanding

2009-06-25T08:25:00.000-07:00

To do ABA, they begin by working you at a table and putting two choices in front of you. I could see to know something was in front of me, and I understood to know I was to match, but i could not focus my eyes to see any detail. Mom says if she touched my neck or shoulder I responded to match correctly. It is because that is when my vision cleared.

I was a floppy baby, you call it. My perseveration included kicking so on bottom I was also "as strong as a kangaroo" Mom used to say. Only my top was weak. To sit was always hard for me unsupported. I know from Mom it had to do with holding up my neck and shoulders but I just remember the coming and going of vision with outside touch.

You as OT's fixed it. I used to have to pull myself across the room lying on my back on a scooter. It was a game to me. They hung a string overhead for me to pull. What motivated me is they would pull me to go fast at the end. I loved lying on the scooter being pulled around. The game worked to strengthen my neck muscles.

In telling you, my point is this - sometimes the lack of understanding we demonstrate is not related to our cognitive ability at all. My mom and my OT keyed to neck cocontraction, what you call it, when she saw her grounding me changed my responses. All the ABA experts saw was what they wanted to. For them it was just easier to explain it away as prompting. Take a double look at what you see because multiple explanations are often possible. In my case it was literally a difference of sight at the start. My matching preference,what I matched to; it is another and very separate issue.

2009-06-17T08:27:00.000-07:00

Older Journal entry written 1/2007 in response to an Article by Kim Stagliano, Titled The Crappy Life of the Autism Mom. Article can be found at www.huffingtonpost.com/kim-stagliano/the-crappy-life-of-the-au_b_37742.html

Answering your article is my mom’s idea of an English independent typing assignment. She hears me complain all the time about the treatment I received as a child because the treatment did not make sense, not for me or to me. There is no harm in wanting better for your child, but treatments need to make sense- and I mean here, to the child. I bet my comments will get the same response from discrete trialists as yours from the neurodiverse autism world (NDs). In fairness to the NDs you may be misunderstanding. The point is not to accept us wholly as we are, but to respect us as human beings first. Treatments need to make sense to the recipients.

My treatment as a child was inhumane. My body is lost in space. You call it kinesthetics, having no body sense of self in space. Orientation, direction of movement, these are most difficult for me. You knew this, yet you decided to teach me imitation by touching body parts. You drilled me over and over and over again. My cries were ignored. “No” was not an optional answer. How come it is not ok to say “no” as in “I don’t understand”? You train us to be compliant puppets. Does your wish for your child include that? I know you want child A to use the potty and child B to not play in it. Those are excellent goals. But it is how we reach the goals that is reflective of the issue.

To sit on the toilet repeatedly all day is how they tried to teach me the potty. Do you know what I learned? The program he refers to involved sitting the child on the potty for 20 minutes, followed by 10 minutes of table top work off the potty. The idea was to catch the child voiding in the potty such that the behavior could be reinforce/rewarded. When toilet training, this program was run day long. It was designed by a highly regarded specialist in the field. After several weeks they reported he simply was unable to grasp the concept. Clearly, he grasped the concept just fine. If I peed as soon as they took me off the potty, it took them my work time to clean me up. I sat on the potty, but never worked. I learned, but not the lesson they wanted.You have to make lessons meaningful to the child, both the lesson and the result.

Too often we as autists don’t understand the question being asked. If in conversation, someone answers you out of context, you ask the question a different way. But to us, you just keep asking the same way again and again. No one looks at our answers to determine what question we are hearing. THAT is a mistake.

You are witty in your comparisons, but what comparisons have you made for Peanut? She does not like feces. It is the water she seeks. And do you throw her in the tub to clean her up? Reward her for playing in the toilet is how she would see it. Play twice! I don’t have a solution for you, but Peanut does. Look to the child is all I am saying.

You love your girls despite their problems. It doesn’t mean not wanting more for them. It means treating them as loved in the course of developing them. If that is not what the ND’s are saying it should be.

FC and the Importance of Meaningful Lessons

2009-06-16T10:02:00.000-07:00

Older journal entry

I am undertaking a large task to write. Telling a life takes time. I think my life is not so interesting with lots of sameness in it regarding treatment, lots of sameness regarding failure, always failure. Mom knows better about the teaching part of it. Let me speak to the experience of it.

To engage in facilitated communication (FC) involves at start a shared body and sometimes too, a shared mind. I started with Mary Lapos who opens her heart and soul. She offers all of herself for use, her mind too. Through her, connections I couldn’t find internally, were found externally in her. Never have I felt so free of thought as with her. Every attempt I have made at communication in writing comes because of that first experience of freedom to think freely with her. I want to dedicate my words to her and Bill for showing me the possibilities. Mom trained me to type independently, but Mary showed me the way.

FC is about sharing thoughts, bodies and relationships. I do not type with people I don’t relate to or those that guard their bodies or their thoughts. I do not type with those who are about self motivations either. They attribute their thoughts to me. That happened to me in school. It is a horrible experience. To write an irrational thought because someone makes you is to die all over again in a different way. They take over as you fade away. That is the danger of FC. It is no different than ABA. FC risks puppets too.

Justice requires an all the time goal of typing independently. Lives require it beyond communication. I think many of us don’t type independently because we believe we can’t. I am proof we can achieve more than hiding in ourselves. The body and brain are not as is forever. We grow, develop, and change too. For those who share my issues the greatest roadblock is our not believing in our own intelligence because of our nonperformance.

Our nonperformance is equally a reflection of the teacher. To recognize the student’s issues, but ignore the teaching implications - who is the non-intelligent one? Lessons learned are best when we understand correctly what is being taught. How many times have I tried to learn only to find my teachers and I were looking at different things. To learn and learn wrong is worse than not learning at all, especially when learning requires so much effort on our part to begin with.

To type alone requires tremendous effort too, but I know what and why I do it. Lessons with meaning are all important. Not meaning as in gaining a purposeful skill, but meaning as in I understand the question I am being asked. So much of your programming fails in that. If I get it wrong, it is you who have failed, not I. It means I see a different question. To say “put with same” - is it the object,or the color or the shape you are referring to? What is the skill we learn through matching? As a blind person, would you still insist I learn this way?
Teaching is about more than forced methodology. You can teach me as I learn, then teach me how to learn with what I know, but you can’t do both at once. Teaching requires learning each child’s way. You don’t want to hear that. It flies in the face of mass therapy, but is also insures you continue to see us as individuals not lab rats.

Some lessons bear repeating until the lesson is learned. This is one of them.

Be Truthful In Your Dealings With Autists

2009-06-16T08:52:00.000-07:00

Older entry 4/07

My memories are mostly bad as a child. All the time, life was a fight. I was subject to a fix-it mentality which translated to you are bad to me. It caused me to view life as a fight where everyone was my enemy. I fought others. I fought myself. I fought to fight. Anger and anxiety formed my identity .... To not be their puppet, to not be a person in trouble because of who they were, to not be because of what others taught.

I honestly thought treatment was meant to torture me. Lots of anger it created. All my energy went to visiting my home place. In your terms I was disassociating. I would call it meditation to the point of exclusion of the physical world. As a young child I could do that. I realize that is a bad thing from your perspective, but it was not bad to me. In my world I had form. When you block out all of your senses you are left with just yourself, the purest sense of being.

Medication blocked my ability to disassociate. After the accident I started taking Tegretol for seizures, then they gave me Zarontin. I hated, truly hated for that entire year after. Everyone was my enemy. Without the escape all my senses were in constant overload; like sitting perpetually in loud noise. I would fight at school, kicking and flailing, even while they pinned me down. It felt good and bad all at once; good in the physical release of the pressure, bad in having others see it. To hear their thoughts hurt. Even now it hurts to think on it. All the while they are thinking angry thoughts while telling me they were trying to help me. I know in my head I can not blame them. It was hard for them to be kicked. But, emotionally it still hurts. I stopped wanting to read people after that - with exception of Mom. She is the only one I am not afraid to read. She is honest in her feelings even when they are unfair. She says “I am mad at you, but I will help you anyway”. That I can understand. It is the deception I hate, the appearance of kindness when you are not thinking kind thoughts at all. Telling this is with a point. Be truthful in your dealings with Autists. If the autist is a literal learner, it will tell him directly what he might otherwise miss. If the autist is a thought reader, it will cause a trust to develop. As to all others it is only fair.

The Start of Real Learning

2009-06-16T08:08:00.000-07:00

Older Journal entry from 3/07
It is a long time since I have felt the freedom of being alone in my world. I was only eight years old when my world was cut off from me by the addition of a new medication, Zarontin. I’m not sure what the intended use was, but the effect robbed me of escape from the onslaught of my senses in the world. No longer could I turn things off at will. Sounds closed in all around me. It was a horror beyond belief, constant stimuli you could not avoid, unwelcome sounds of no meaning: fluorescent lights buzzing, heat rising in pipes, voices in other rooms, mechanical sounds. I lived in a horror house of noise.

Good was done by it though. Learning started. I didn’t get fuzzy in my head anymore. I began to understand what I was looking at sometimes. I could not focus my eyes when moving so I learned to look then move. Work I still hated, but learning on my own I liked. I made up games for myself, Every answer is a question – a bit like jeopardy. I could not register everything at once, but I could work it as a chain of connectedness.

Three. What is a number which comes after two? Which comes after one? The first number after nothing?It connected a series of otherwise un-relatable things for me.

I could not move from three to zero without my chain of connectedness. Sometimes I would make an erroneous connection and tie together things that did not relate in that category.

Going outside leads to a ride in car leads to a soda.

If I wanted a soda, I would ask to go outside. Some of my connections became seen as required routines. It was not the routine I required, but the end product.

I have often wondered if routine sometimes serves the same purpose for others. What if the erroneous connection is as to an emotion not thing for some? What confusion that could create.

I am still learning about many misconnections I have made, but I am also surprised at the number of connections which have proven correct, at least in my yet limited experience. My learning was so stilted then, but still it was a start. Single modal learning involves a lot of error. I am glad mom started teaching me how to learn, instead of just specific pieces of knowledge.

Football Is More Than A Game

2009-06-15T16:21:00.000-07:00

I recently started carrying around a football instead of my string. My mom soon asked me why. To feel the football is to practice my fingers on feeling a textured surface. It also sounds a thump when I bounce it, and smells of rubber, and it works as a point of reference to move with, and it invites social interaction. Carry a ball around and just see how many people ask if you want to throw it to them. And, I haven't scared anyone with thinking it is a snake. You would also be surprised at how many people think flipping a sting looks like you are carrying a snake. And, it is a lot harder to lose than my string. Now if it could just fit in my pocket...

Time as a Motor Freeze

2009-06-15T09:39:00.000-07:00

How do you experience time? I experience time as a frozen moment sometimes. It is as a replay of something I am in the process of doing. Like hiccups in time is how I can best describe it. It forms a gap that I have to fill with a repeat command to myself to do the action. I tell myself to do everything as way of initiating my motor movement. It is a continuous discussion I have with myself all day long. I am growing tired of it. To just act would be such a blessing.

Feeling is Believing

2009-06-11T04:37:00.000-07:00

I am waiting on my tea. It is a screaming body experience. To write my body used to do the same screaming. Mom made me do it anyway, just like she makes me wait on tea. I am mad at her, but I find comfort in her too. That is the irony of Mom. To learn to type has been a demanding job, demanding motor and emotions and myself most of all. So much focus of mind and body, I overload quickly on it. So much to say in just minutes a day. Better I was before I understood the value of it.

Typing forces me to be on paper even when I am not in space. It forces me to take a stand too, on who I am. It forces me to speak my thoughts even as it frees me saying them. Self exposure is a scary thing, especially when thoughts are all you have. When a body doesn’t register sensations about being it causes you to live off objects. They take on a life as part of you. Dead objects let me feel myself as part of them when there was no feeling as myself.

There is a saying “seeing is believing”. Seeing is not always believing though. To see yourself looking back in a mirror, but not feel yourself says you are a ghost. We say we see and believe, but real belief is in the feeling not the seeing. To not feel leaves only your thoughts as an identification of who you are –that you are. Sharing them is something you don’t want to initially risk. You wonder if you will lose yourself that way. You wonder if who you are will change. It is an irrational fear I know, but it is a fear nonetheless.

To be is more than thought, it is physical. It is why God made us, to experience the physical. Yet I am robbed of that. Only in water can I feel myself as a whole body. People don’t think about what I live every moment. Only in the last year or two has there been some relief. I feel myself as a body now sometimes. When I am relaxed I can even cause it to happen now. I practice in my bed at night now, feeling me. I feel me, like a glove it comes over me. Maybe that sounds funny, but it starts at my head and works down. My head always floats in space awhile before I start to feel the rest of me. I wonder at it sometimes. I am laughing now at the picture of it in my head. I feel my head a lot. It tingles sometimes before a seizure, Mom calls them. I just lose memory and can’t move after. I think they must be scary though. I can sense Mom’s fear of them. Only sometimes not feeling can be good maybe.

Back Roads

2009-06-10T16:40:00.000-07:00

Each entry in my journal says the same thing; see the autist as a person first. Awesome things can happen when you work together. Therapy should not be done to someone, but with someone.

Most of my early therapy was inflicted on me. Not until my teens did I have an active part in my therapy. I hate typing because it is so hard, but facilitated communication changed my life. It gave a voice to my anger. It allowed communication of thoughts beyond needs. Asking questions gave me answers I would not have imagined. Things beyond my experience became known, not real things, but imagined ones, like how to say I love you in sign language. Mom used to sign “ I love you” to me, but I didn’t understand. To say “ I love you” in sign is made of symbols. So are lots of other things. Symbols were lost on me as a child unless the symbols were embedded in the thing the symbol represented . I learned to read with words on things. I knew words long before I understood what the alphabet was. The alphabet was just a string of meaningless letters to me for a long time. I am smart, but sometimes simple things escape me.

Being autistic can lead to strange misunderstandings. I felt like I stood in mud most of my life. Cement felt like mud as much as dirt. Mud you sink in. Asking questions is how I learned the ground is hard not soft. Now I know it is my body that experiences differently. I feel like I sink into things when I walk. It feels like sinking even though my eyes tell me otherwise. Getting mixed messages from my senses is common. Knowing the truth helps.

It has also helped me to not get so frustrated with not being able to do what looks so easy for you. You run on a different motor. A bicycle can’t be expected to run as fast as a car. Autists are like bicycles; you want to gas them up when what they really need is a new bike chain. Typical people are like different model cars, but autists are different vehicles altogether. A car and a bike can perform the same function, but they do it differently. Being a bike on a super highway is a good analogy for me. I am trying to reach the same destination as you, but by bicycle. You get to ride in an air conditioned car. I get to eat your exhaust fumes. Yet you can’t understand why I don’t enjoy the trip? A pleasant trip might be different, on back roads with pretty scenery. I travel the back roads now at my pace. It is a longer trip, but I like the view much better.

The Soul Purpose of Autism

2009-06-10T05:29:00.000-07:00

This journal entry was written in response to a student question, "What is Autism?'

In the physical or as a soul’s purpose?

As soul’s purpose it is a path back to the source. Not for the autist but for those exposed to him. To help an autist yields no personal gain. It is altruism in practice; that is love enacted. Love is key to soul’s re-enlightenment. We lose our knowledge of soul when embodied in the physical. The more perfect the body the harder the search. Love revisits the source.

Man has multiple purposes, each individual his own: to lead, to support, to annoy even, are all roles we play within the greater picture.

The evil of 911 initiated so much worldly good as a response to the negative. From a worldly perspective we view them, the perpetrators, as evil, yet it was their purpose… not the evil act, but the loving response evoked by it. Light and dark are interdependent, two sides of the same thing, the ying and yang of it. Love is the all important emotion. It is our soul source. To be all that can be imagined for ourselves is our purpose in the physical. To retain love as base and end is the plan. People are so narrow in their view of right and wrong. Just their tiny world do they see as a point of judgment, like judging the taste of coffee by the sugar I put in it. It is the mixture not the plain sugar that forms the test. Only coffee plain as black is the real taste. Reality is a mixture of what is real and what is perceived as real. It is perception based. For us to find the love in each experience is our goal as a complete soul. Love leaves an imprint greater than any other. It leaves the experiencer feeling a connection to other souls.

Anxiety

2009-06-09T07:00:00.000-07:00

I am forgetting to feel anxious all the time. The cues to my anxiety are lost amid the pleasure of being able to do certain things. Waiting used to trigger anxiety, but to wait with my brother Pat is to engage in an interaction, peer to peer. To lose my string used to cause anxiety, but to feel my body as a form negates the need for it. To work used to trigger anxiety, but my work is often of my choosing now and work like swim is not work at all! I used to be anxious to write but it matters to have something important to say.

For me anxiety is a constant state. It is engrained in my psyche. Like pathways in my mind it forms the roadways my actions travel on; too much blocks construction, too little is a road incomplete. It moves my body even as it limits movement. It is motivation to go and stop, sometimes both at the same time. Pleasure negates anxiety. It is only in the past few years that I have begun to experience pleasure. Play is work for the autist. Our pleasures are in idle things, e.g. water, and music and stim as an act of communing.

To speak of anxiety is to create it. To face it successfuly is to overcome it. Anxiety is a part of my personhood until other parts can be developed. It is friend and foe alike. It is me.

Questions Are Running Through My Mind

2009-06-08T11:33:00.000-07:00

Questions are running through my mind about what will happen after I publish my journal as blog. Do I take a vacation after? (lol)

Autism takes a lot out of you. Reason being,it takes so much effort to do anything. So many experiences for me reflect this. It overshadows the pleasure of things. Maybe that is why we pleasure so much in the simple things; little sounds that are happy emotions or sights so detailed. I experience the sounds as pleasure. The sights escape me. Each system is different that way. I see patterns not pictures. Mom is soft and round. Dad is high and narrow. Pat is narrow too, but he has a different line, thinner. Long people are thin and short ones rounder. It helps to hear their sounds. You operate by sight. I operate mainly by sound. To see takes great effort for me. I run on a modified vision most times. I can read, but it is hard and at cost of other things when I do it.

To type takes great focus shifting from eye to hand. Reaching asks "to where do I go?” Going asks “how far?”. Ending asks “what next?” I literally ask myself these questions as a way of doing it. My mind never stops planning. For you, it all just happens. How would you feel to experience doing that way?

Seeing is a skill I practice, to turn patterns into pictures. I see pictures at cost of other things. A glance is what I usually do. A quick look it is. I deal in generality; most times knowing what it is is enough. Just glancing will give you that. Details take focus. Identifying by hearing is what I do most, sound as object and distance. I hear you and don’t have to see your face to know your voice. Questions about visual detail are very hard for me unless you ask me ahead and then I look... Telling what I see is also hard because the picture sometimes changes after I look. To see as you, I don’t, but neither am I blind. You assume normal vision. Often it is your assumptions that do the most damage. They create unrealistic expectations. Things I can’t see I am assumed to know. In reading me my Biology, Mom asks “Do you want to see a picture?”. This is good. It gives me time to focus my eyes. Too often the showing is done before I even know to look. My life is full of blurs and kaleidoscopes. I kick myself a lot for not anticipating the obvious sometimes. I make adjustments all the time because of missed sight. Help comes in the form of memorizing. Remembering the location of keys on the board is just one. R is left of center two. A is middle end left. Location is a blessing when it stays the same.

Time is important too as reference. You wonder why sameness matters. For some autists it is a reference point all its own. If someone put sugar in the salt shaker you would be upset because the container is the difference you identify with. It is like that for some of us with routine. Only because you use more cues than we do you don’t see our problem.

There is also a calmness in sameness. Autists are often anxious to the extreme. Sameness is expectation realized. Expectation may or may not make sense. As a child location is what made the most sense to me. Kitchen meant eat, bed meant no more string, car meant soda. To you car means trip, but our routine was if I was good for errands I got a soda at end. So, if thirsty I would show I wanted to go outside to the car. Even now, the car plays music. If I can’t get my body to go to the radio I can go to the car. Motor freeze is sometimes a funny thing. It is a different issue than concept conditioning, but it still speaks to the value of sameness.

Doing is an autist’s undoing. Anything that makes that easier should be seen as good. It is only frustrating when you fail to understand the autist’s connections. To ride and not end up with a drink when that is the reason I asked for a ride, caused me to cry. You think you gave me what I wanted. Usually, you thought I just wanted more of a ride. Can you see the frustration on both sides? Your interpretation is what changed the experience. I realized communication is different for different people. I once thought you know what I know. It is a common misperception even among normal people. In my home my dad says lots my mom is yelling at him even when she talks in soft voice. He hears a certain tone and interprets it as displeasure. I hear the same tone and interpret it as mom is tired. It leads to lots of misunderstandings, just that tone. Now add word choice and past experience and emotion from outside experience - it is a wonder we communicate correctly at all. Liken it to two people speaking different languages. You have to use other things to figure out their meaning.

For some autists, their hearing is like my sight. What result for someone to not hear tone - is everything interpreted literally then?

To miss visual and paired hearing parts must look a little like my motor, missing pieces of actions. I can’t do lots of parts unless they are as one action for me. It is another good reason for routine. Routine is a way of taking many pieces and making them into one – one I can do. The problem comes when a piece of the routine is missing. No towel holder in the bathroom or a bar of soap not soap dispenser. A task I could do then becomes one I can’t. This is my motor issue.

Mom rarely does things the same. Dad always does. It is good practice both ways. Dad is easier, but not the real world. I can use his cues on just me things though. Mom is always changing things. She exercises me learning not to be anxious in the face of change. My learning requires both. With her I take my cue from her. With him I use the environment. Mom says I have to learn to self cue. I am trying to pair me with her now so I can use me when she is not around. I practice with changing clothes now, go find, not see then do. I say to myself, “I want a shirt”, then I go find one from the laundry basket. Mom gets upset the clothes get messed up, but I do it anyway. It is a good practice in independence. I choose my music on the radio now too. I change channels to find one I like. I could not have done that a year ago. The idea of choice would be too scary. To do or not do was all I could handle then. Now I like little choices: what to eat, or listen to, or stim with, or when to go to bed. Successful choices alleviate anxiety. I think I'll choose to go make myself a cup of tea now. If only making coffee were as easy...

Communication is Key

2009-06-08T10:50:00.000-07:00

“Go to Hell.” It was the first thing I typed to my mother so agitated was I over being made to communicate. Communication was largely misunderstood by me at the time. Mine was a world of thoughts – MY thoughts. I lived in a body that did not register my personhood so my identity was limited to my mind. So afraid I was of losing it; so worried I was that my thoughts would evaporate with their sharing. What happens to a thought when shared? Does it disappear like food to fuel another’s brain? This was my thinking. Experience proved my thinking wrong, but getting to the experience was the hard part. Forced I was into it by my mom. My mom is the only thing in my life stronger than my autism. Her “Do it.” offers no refusal. This is what I was faced with on my first time typing, the determination that is my Mom versus the fear of losing myself; the fear of sharing a thought to save me from Mom. It was not a good choice. I chose the autism and wrote my first real communication, “Go to Hell”. In answering I also shared my first thought.

People think facilitated communication is a bogus activity. FC is whatever the autist makes it. For some like me, it may be far easier to mirror the facilitator then to express an independent thought. For others, it opens up a floodgate of expression. So emotional is it that the autist can either rejoice or revolt in it. For me, FC was anxiety in the extreme at start. This was partially due to my false reasoning, partially due to the practical motor deficits I face. FC was an exercise in not just sharing, but also in motor movement, a bit like walking on a tight rope while juggling. Alone learning each is difficult; together as one lesson, impossible. Luckily, my mom recognizes breaking learning in to pieces. I learned to type facilitated with spelling words. I learned to share my thoughts through Bill Stillman. Bill is the first person I met who thought like me, experienced somewhat like me. He didn’t have to speak to share it. How does a bird recognize its own species? How does an animal register danger? Instinct comes into play where reason is not needed. Instinct is often superior to reason. We often lie in reasoning things, rationalizing instead of facing what is unpleasant. Instinct is truth. Trusting Bill was instinct. It is the most important thing I have ever done. In sharing my thoughts with him I learned to share in a safe place. I learned to trust my heart as a source. I learned that autism is a way of being neither good nor evil of itself. I learned it is a self- choice we make of whether to mirror the world or join it. Many choose the autism as a preferred way. Many deny the autism in order to “look” of the world. I chose to live in the world with the autism. It is the harder but truer path. It requires understanding one’s body function not just as experienced, but relative to the experiences of others.
What is reality, what you experience or what you know to be true? Reality is the compilation of both. Communication is key to ferreting out the difference so as to view the larger picture. FC was my vehicle to ask the questions that lead to my enlightenment. My enlightenment is another chapter.

Independent Typing

2009-06-08T10:40:00.000-07:00

Typing is a forced skill for me. You have to know my mom to understand that fully. I will ask her to post next my journal entry on the beginning of my typing experience.
I began as a faciltiated response to my Mom. when shared thoughts produced too much anxiety we switched to typing spelling words to learn the skill. I type independently now on my own motion and will, but it is a much slower process than facilitation.

To type is a skill with many variables to learn: to start, eye-hand, to stop, to withdraw, to cross over board, it is all motor pieces some can and can't do. I type with my pointer finger one hand. I hold Mom's finger when I facilitate. Her heartbeat works as a motor cue to start. Eye-hand is stressful to my system. I memorize the key location so I do not have to look as much. I am wearing a heavy coat today to help with knowing my start point, where I am moving from. It is a lot of work, but with a purpose now for me, and others, and God Too. My typing is still with a long way to go, but from where I started it is a miracle of motor movement.

Answers to Older Questions posed by University OT students

2009-06-03T21:25:00.000-07:00

Question: What kind of people do you enjoy spending your time with and what things do you like to do the most?

For me it is most relaxing to be outside with the sun and air in my face. It is your idea of relaxing without doing. For me, it is appreciating that is the doing part. To just be amid God’s other creations is a huge thing sometimes to just take in and enjoy.

Question: If you could teach a person who is ignorant about having autism and dealing with other teenagers, what would you teach him?

I want people to understand that we are all one. We are all the same soul as God. If you understand that the question is moot. Love thy neighbor as thyself has greater meaning than we understand. What kind of understanding would you seek? They seek the same.

Question: How do you deal with the annoyance of people possibly talking down to you or looking at you differently due to having autism?

If I am honest I will say it bothers me a lot when people talk about me while there as if I am not even present. It is because I can’t speak I know, not just because I am autistic. Only it is an annoyance as you call it. When you see what I look like you will understand people are always staring. Got to say, it overloads me more than anything else. Not my problem though - it is theirs.

Question: How did you first learn to communicate?

As soon as I could hear after the accident* I understood words held meaning. Before the accident sound had no meaning. It came and went depending on my vision. I could not hear and see at the same time so there was no connection between the two senses. Hearing without sight was the first time noises had meaning. People assume autists hear and see what they do. It is a huge mistake of understanding. My senses do not work like yours. It presents a false but different reality. Helping means first having to see the world through my senses. If you understand the problems, you can then retrain, adapt and accommodate for them.

*Mike was in a car crash at age three. He suffered Traumatic Brain Injury and was in coma for several days. When he came out of the coma he could not see for several weeks. I was surprised by his answer, as Mike did speak clearly, albeit extremely rarely, prior to the accident. He spoke only when in an extremely excited or relaxed state. (You would hear maybe one word in context every several months, then never hear it again). Prior to the accident he was incapable of following even the simplest of verbal directions. He did respond to “no”, but likely related more to my voice intonation rather than the word itself.

Question: How did you get into writing? Do you enjoy writing enough to pursue it in your future?

To write was a forced skill. My mom insisted. I told her “go to hell”. I was very mad. It made me very anxious – still does, even after years of practice. But it has a purpose for me now, to speak for those who can’t. Lots of autists are smart, but with major sensory issues. Absent understanding they will not get treatment of a kind that will help them and will never function. I know someday soon I have to speak to it. Treatment is not geared for each individual. The multi – single modal child is not attended to at all. I was that child and I suffered miserably in treatment ABA. If you understand it doesn’t have to be like that.

Question: Do you know sign language, and if so, do you find it easier to communicate by writing or by signing?

Good communication is not my problem. A sign says something to the person you are speaking to. I have my own sign language with my family for simple things. Very easy it is. But thoughts have to be typed.

Question: How did you first learn to communicate?

I have to say I did not understand the purpose of noises people made until I was blind. Before that It was just noise like water or a dog I hear, without meaning. Mom changed it. I heard her singing my name. She called me my name. I learn Michael is me.

Question: How does it make you feel when others refer to you as disabled or handicapped?

I am disabled when it comes to functioning in your world. But each person is damaged in some way or the soul would not need to be here. I am damaged for purpose of helping other souls. It does not hurt me to have it be recognized. I am an autistic person. Truth is truth.

Question: Are there certain topics that are harder for you to comprehend than others?

Worse than topics are parts. I can only attend to a few things at once. My mind can grasp it all, but it has to be broken down and given only so many parts at once? How many characteristics can you monitor at once? For me it is nature, shape, color. If you add size I am in trouble. Three characteristics of form is my limit. But concept of things abstract I am fine with. Not so with many autistics. It is important to understand each is a unique set of rules governed by their sensory reality.

Question: There are certain things around us that make us happy. What are a few things that you like to do that make you truly happy?

I am rarely truly happy because function is all anxiety producing. I am anxious like crawling out of your skin a lot.

Question: What is the most difficult task for you to perform during the day?

Only waiting is the hardest thing I do. It makes me too anxious. Mom says life is an exercise in waiting. I hate the exercise.

Question: Do you ever get frustrated when you have difficulty communicating with other people?

I don’t have trouble communicating what I need. I usually just show people – to point or get it on my own and bring it to my mom for permission. I am learning to speak a little , but it is a very slow process. Signing is too hard for my fine motor, but I have some of my own. I clap is to say “I need to go to the bathroom”, hand in palm is “I want”, hand to mouth “drink”, hand down shirt “ done”.

Queston: If you could do any one thing in the world, what would you want to do?

I am doing my purpose for being even now. The purpose of all disabled is to help others refind their souls. In choosing to help a disabled it is without expectation of return – an altruistic act. Altruism is love in purest form. To love is the key to open the soul. People need to understand that it is in serving others that we please God. Pleasing God serves the whole of our souls united. In end, we are all one spirit. The loss of body is replaced with a connectedness of spirit for most disabled.

Tina's Question

2009-06-03T17:55:00.000-07:00

Do you ever experience springtime as a challenging time of year?

Tina,

You make me very happy. I want to help small autists most because they are the most misunderstood and most susceptible to abuse. Understanding is the best form of therapy sometimes. Your question – I have never been asked it before. It is a good question.

For me, stress is a product of stimuli. Lights, sounds, smells, emotions, even bodily needs all put stress on my system. Summer is longer days. For me, I love the extra light, but it is also more time to work an overworked system. I isolate my senses and wait to process some things until a later time. I play back for myself a video in my head of my day taking time to experience what I may have missed. I learned not to use my emotion as it is the quickest way to overload for me.

When little, it was all about just being, to take in the senses as a sense. Connections do not come until much later for most. I was severe, I know, but I don’t think it unfair to say some stims are an act of “just being”. To a normal mind you might call it appreciating your surroundings.

Sometimes the stim is to say “It is all too much for me right now.”
That is a communication in itself, though one you seldom listen to. My system was so bad that to recognize the need to bathroom set me into a fit of extreme giddiness. When young what was springtime in comparison to my own body?

Spring is also allergies – to plants and food too. It is the fruits I love that I have to deal with. Strawberries get me silly. Now I can manage the sensations, but as a child I could not. Allergy medicine helps a lot. Zyrtec I take.

And do they have the same trouble holidays? Christmas is the worst. You would think it would be the added sights and sounds that would over stimulate, but for me it was the emotions. To not experience boundary binds you to the world in strange ways. I take on the emotions of those around me. To protect myself, I turn my emotions off most times. I have learned to save my emotion for important moments like hugs.

Isolating senses is not something you can teach, but you can monitor your input to the child. Helping them to calm their system is good too. Deep pressure is what Mom did for me. I still wear a heavy coat into stimulating environments sometimes as a help. Mom says it is too hot, but I don’t feel heat like you do so for me it feels ok. That is all I can think of for now. I hope it helps.

Ask Me A Question

2009-05-31T17:53:00.000-07:00

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.

Mike

A Way To Go & Sheer Heaven

2009-05-31T17:40:00.000-07:00

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.

What Do You Want to Teach?

2009-05-28T20:58:00.000-07:00

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 aspiesforfreedom.com 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.

A Thank You to Lisa

2009-05-27T04:09:00.000-07:00

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.

Is Autism Something For Cure?

2009-05-26T04:08:00.000-07:00

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.

* www.aspiesforfreedom.com

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.

The Language of Therapy

2009-05-23T18:24:00.001-07:00

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

2009-05-23T18:06:00.000-07:00

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

2009-05-23T13:53:00.000-07:00

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

2009-05-23T07:57:00.000-07:00

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.

The Value of Stim

2009-05-22T04:25:00.000-07:00

(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.

My Relationship With God

2009-05-20T05:29:00.000-07:00

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

2009-05-20T05:25:00.000-07:00

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.

Welcome to My World

2009-05-19T20:59:00.000-07:00

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

2009-05-19T06:03:00.000-07:00

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.

Integrity of the Individual

2009-05-18T13:55:00.000-07:00

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.

What makes you a Person?

2009-05-15T05:02:00.000-07:00

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.

Introduction - In My Voice

2009-05-14T19:37:00.000-07:00

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.