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.
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
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.
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.
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."
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.
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.
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.
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.
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.
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!
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.
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.
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.
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.
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.
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.
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.
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.
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.
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...
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.
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.
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.
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.
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 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...
“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.
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.
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.
Do you ever experience springtime as a challenging time of year?
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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 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.
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