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.
Monday, June 29, 2009
Thursday, June 25, 2009
A Perceived Lack of Understanding
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.
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.
Wednesday, June 17, 2009
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.
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.
Tuesday, June 16, 2009
FC and the Importance of Meaningful Lessons
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.
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
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.
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
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.
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.
Monday, June 15, 2009
Football Is More Than A Game
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
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.
Thursday, June 11, 2009
Feeling is Believing
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.
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.
Wednesday, June 10, 2009
Back Roads
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.
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
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.
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.
Tuesday, June 9, 2009
Anxiety
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.
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.
Monday, June 8, 2009
Questions Are Running Through My Mind
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...
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
“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.
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
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.
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.
Wednesday, June 3, 2009
Answers to Older Questions posed by University OT students
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.
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
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.
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.
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