Let's begin with the end. Today the wound looks better and feels better, and the neck is not nearly as sore as it was. My eye feels less puffy and I can see clearer than yesterday. In other words, I will be fine. So why write about it? Surely there are more serious things to concern ourselves about than a dumb injury falling down stairs? Yet, it happened to me so here goes.
Thursday afternoon, while talking on the cell phone, holding a stack of music in one arm and a cell phone in the other, I was headed down the stairs to get to orchestra rehearsal. Multi-tasking as they say. Thinking about the rehearsal music, dealing with the issue on the phone, and slightly irritated that I could not "beam" myself to the rehearsal area, I made the decision to run down the stairs two steps at a time. Unfortunately perhaps due to clumsiness, or dress shoes, or steep steps, or whatever, I missed a step, accelerated down the stairs, stayed on feet and went flying into the wall. My forehead and glasses took a good hit, the sheet rock collapsed a couple of inches, and I ended up on the floor with blood pouring down my face and a neck ache similar to an auto accident.
Several people jumped in to help and the bleeding was stopped. In quite a bit of pain and several OTC medications later, I realized I needed some professional medical attention. The subsequent medical examination revealed superficial lacerations around the eye and head with some accompanying swelling but nothing serious. The neck, however was in a muscle spasm that needed to be relaxed. A steroid shot and a series of muscle relaxers have helped considerably, and I am now on the way to recovery.
Obviously, this situation was avoidable and could have been worse. It is not worth many more words so I think I'll stop writing. No need for platitudes about hurrying, multi-tasking, concentrating, or any number of life's lessons.
Monday, August 30, 2010
Saturday, August 28, 2010
Awareness of Disability
We have never tried to hide Joel's disabilities from him but instead have sought to help him through them while constantly encouraging improvement. To remind him continually that he cannot do certain things due to being disabled would become self-fulfilling, causing him to wake up every day knowing he is different and being unable to make any kind of effort at anything. On the other side, however, it never has seemed right to affirm him and postulate dreams that cannot happen. Filling his head with goals that are unattainable is a form of abuse that is not fair.
So we avoid either kind of extreme and instead deal with Joel realistically, pragmatically, yet with non-stop encouragement of the things he can do. For example, Joel cannot drive and we do not expect him to be able to do so. He tends to focus on one thing, being totally unaware of other things around him. He also cannot filter or organize sounds, making road noise a constant roar in his mind. Further, manipulating a steering wheel, blinkers, brakes, accelerator would be too many instruments to do at one time. Not to mention that fact that anything moving quickly overwhelms him.
Recognizing this as truth, he never asks to drive and we never say things like, "When you learn to drive, you can...." It would fill him full of false dreams on the level of someone telling me I will become a professional basketball player someday. Some things just won't happen.
Yet our knowing and reminding him of his limitations is not degrading or negative, instead we continually replace the problems with his potential. About once a week we ask him to list the things he is successful doing--playing the organ, sorting books, helping in the kitchen, choosing clothes, sharing good cheer and friendliness, and learning about actors and musicals. All these and more form a complete person and provide a sense of self-worth. While occasionally we have to gently say no to something he wants to do, we always try to find an opportunity to say yes to something else.
He mentions his disability occasionally but avoids the use of the term autistic. We are not sure why but it reminds us not to tell people he is autistic in front of him. He doesn't mind our telling people he is disabled, as long as we do so judiciously without criticism. We do not advertise this fact openly but are not embarrassed about it either. We and Joel work hard to appear "normal" but often his disability becomes obvious when carrying out tasks in public. Because of this, it often helps him for us to tell someone he is disabled and therefore requires a little more time for basic tasks. Yes, there are few it frightens, but most people are patient and understanding. Besides it is good for people to learn that not everyone is "normal." Normal sure is a funny word isn't it? Who determines normalcy? What does it really mean? Maybe Joel is normal and we are not! Sorry to digress but it is worth thinking about sometimes.
I do encourage parents to be honest with their children about abilities, limitations, weaknesses, and strengths, but to find a way to do so that is never abusive and only uplifting. This way the child retains a strong sense of self-esteem while knowing his own challenges. Find the good, minimize the bad, but avoid excessive use of impossible dreams that will not happen. Since the positive qualities of an autistic are unbounded, there is no need to dwell on the weaknesses. I believe that most autistic children and adults are well aware of the things they can't do well. It is one reason for the withdrawing of personality that often occurs.
Your job as a caregiver is to help him cope, bring out his best, and provide a sense of security in as least a restrictive environment as possible. All of this forms a young man who is comfortable in his skin for the most part and who knows he is loved by many. But how do we give him a sense of ambition and dreams without creating a false world? Let's talk more about this next time.
So we avoid either kind of extreme and instead deal with Joel realistically, pragmatically, yet with non-stop encouragement of the things he can do. For example, Joel cannot drive and we do not expect him to be able to do so. He tends to focus on one thing, being totally unaware of other things around him. He also cannot filter or organize sounds, making road noise a constant roar in his mind. Further, manipulating a steering wheel, blinkers, brakes, accelerator would be too many instruments to do at one time. Not to mention that fact that anything moving quickly overwhelms him.
Recognizing this as truth, he never asks to drive and we never say things like, "When you learn to drive, you can...." It would fill him full of false dreams on the level of someone telling me I will become a professional basketball player someday. Some things just won't happen.
Yet our knowing and reminding him of his limitations is not degrading or negative, instead we continually replace the problems with his potential. About once a week we ask him to list the things he is successful doing--playing the organ, sorting books, helping in the kitchen, choosing clothes, sharing good cheer and friendliness, and learning about actors and musicals. All these and more form a complete person and provide a sense of self-worth. While occasionally we have to gently say no to something he wants to do, we always try to find an opportunity to say yes to something else.
He mentions his disability occasionally but avoids the use of the term autistic. We are not sure why but it reminds us not to tell people he is autistic in front of him. He doesn't mind our telling people he is disabled, as long as we do so judiciously without criticism. We do not advertise this fact openly but are not embarrassed about it either. We and Joel work hard to appear "normal" but often his disability becomes obvious when carrying out tasks in public. Because of this, it often helps him for us to tell someone he is disabled and therefore requires a little more time for basic tasks. Yes, there are few it frightens, but most people are patient and understanding. Besides it is good for people to learn that not everyone is "normal." Normal sure is a funny word isn't it? Who determines normalcy? What does it really mean? Maybe Joel is normal and we are not! Sorry to digress but it is worth thinking about sometimes.
I do encourage parents to be honest with their children about abilities, limitations, weaknesses, and strengths, but to find a way to do so that is never abusive and only uplifting. This way the child retains a strong sense of self-esteem while knowing his own challenges. Find the good, minimize the bad, but avoid excessive use of impossible dreams that will not happen. Since the positive qualities of an autistic are unbounded, there is no need to dwell on the weaknesses. I believe that most autistic children and adults are well aware of the things they can't do well. It is one reason for the withdrawing of personality that often occurs.
Your job as a caregiver is to help him cope, bring out his best, and provide a sense of security in as least a restrictive environment as possible. All of this forms a young man who is comfortable in his skin for the most part and who knows he is loved by many. But how do we give him a sense of ambition and dreams without creating a false world? Let's talk more about this next time.
Thursday, August 26, 2010
Body Language of an Autistic
We are told it is as much as 80% of communication. Others say the number is closer to 50%. We are talking about the use of body language in communication. Whatever the truth, for an autistic, the number is considerably lower. For one thing an autistic person generally has trouble physically. Their gait is sometimes awkward, their muscles slow to develop, their eye-hand coordination weak, and their physiological makeup rather behind. It makes for physical challenges that while not debilitating are certainly limiting. And yet that aside, an autistic learner does not have the ability to perceive nor deliver appropriate body language except in an obvious basic level.
If half of our communication and ability to understand others is physical body language, then it stands to reason that an autistic is already at a huge disadvantage in communicating and/or understanding others. Add to this a disadvantage with regard to verbal skills, creativity, and imagination, and it is easy to see how tough it becomes to communicate on any kind of expected level.
If crossing your arms signifies disagreement or wanting to place a barrier between you and the other person, Joel never disagrees or wants barriers. If eye contact signifies confidence or in some cases defiance, then Joel has neither since he has serious trouble making eye contact. His body does not manifest his emotional state. An autistic does not see or read other people's body language and does not act out his own. He physically responds in a pragmatic way to the events of the moment.
Because body language is another kind of expression of imagination or creativity, it makes sense that Joel cannot experience the complexities of such. He is pretty much missing the gene that gives him creativity. Remember that he cannot lie since lying requires imagination, and he cannot fabricate a body language, whether on purpose or by instinct, that matches his mood. This is not to say that he won't do the occasional "hummph" with his eyes closed and arms crossed. We have seen that but find it to be suspiciously like a cartoon.
Body language, unless deliberate, tends to be, at least for most people, subtle and nondescript, a small extension of the circumstances of the moment. When we fear something or are embarrassed, we tend to hide our faces in our hands. When our favorite team scores a touchdown, we throw our arms open in an expression of glee. When we hear something important, we lean forward, or in boredom we begin to look around. These are commonplace reactions that seem innate although perhaps they are learned behaviors as well. None of these actions happen with autistics.
For Joel, he does not have enough complexity of expression to add to his physiology. It is enough for him to understand the event, request, emotion without having to supplement it with enhanced body language. If he does not like the food, he simply will not eat it. If he sees someone he knows, he simply approaches that person with a handshake, hug, or wave. His body language is natural and obvious, containing no deceit, no manipulation, no subtleties. Just plain, honest, simple expression without complexity. This does not mean Joel is devoid of emotion, approaching life entirely objectively, preferring a stoic existence, or a rigid approach in a kind of black and white existence dealing with facts only. No, Joel is very colorful and emotional, but he does not display in the same way we do. Instead he is very cognizant of his differences as per his disability. Therefore he generally appears to be rather cold and lacking in expression.
Please be aware that as autistic children mature, they tend to become less emotive and more protective. This is a form of maturity. Much of it is the often sad awareness that we don't always get everything we want in life. In a way, that is part of the maturation process for everyone.
Time to discuss his awareness level. Next time.
If half of our communication and ability to understand others is physical body language, then it stands to reason that an autistic is already at a huge disadvantage in communicating and/or understanding others. Add to this a disadvantage with regard to verbal skills, creativity, and imagination, and it is easy to see how tough it becomes to communicate on any kind of expected level.
If crossing your arms signifies disagreement or wanting to place a barrier between you and the other person, Joel never disagrees or wants barriers. If eye contact signifies confidence or in some cases defiance, then Joel has neither since he has serious trouble making eye contact. His body does not manifest his emotional state. An autistic does not see or read other people's body language and does not act out his own. He physically responds in a pragmatic way to the events of the moment.
Because body language is another kind of expression of imagination or creativity, it makes sense that Joel cannot experience the complexities of such. He is pretty much missing the gene that gives him creativity. Remember that he cannot lie since lying requires imagination, and he cannot fabricate a body language, whether on purpose or by instinct, that matches his mood. This is not to say that he won't do the occasional "hummph" with his eyes closed and arms crossed. We have seen that but find it to be suspiciously like a cartoon.
Body language, unless deliberate, tends to be, at least for most people, subtle and nondescript, a small extension of the circumstances of the moment. When we fear something or are embarrassed, we tend to hide our faces in our hands. When our favorite team scores a touchdown, we throw our arms open in an expression of glee. When we hear something important, we lean forward, or in boredom we begin to look around. These are commonplace reactions that seem innate although perhaps they are learned behaviors as well. None of these actions happen with autistics.
For Joel, he does not have enough complexity of expression to add to his physiology. It is enough for him to understand the event, request, emotion without having to supplement it with enhanced body language. If he does not like the food, he simply will not eat it. If he sees someone he knows, he simply approaches that person with a handshake, hug, or wave. His body language is natural and obvious, containing no deceit, no manipulation, no subtleties. Just plain, honest, simple expression without complexity. This does not mean Joel is devoid of emotion, approaching life entirely objectively, preferring a stoic existence, or a rigid approach in a kind of black and white existence dealing with facts only. No, Joel is very colorful and emotional, but he does not display in the same way we do. Instead he is very cognizant of his differences as per his disability. Therefore he generally appears to be rather cold and lacking in expression.
Please be aware that as autistic children mature, they tend to become less emotive and more protective. This is a form of maturity. Much of it is the often sad awareness that we don't always get everything we want in life. In a way, that is part of the maturation process for everyone.
Time to discuss his awareness level. Next time.
Tuesday, August 24, 2010
Facial expressions
Have you ever wondered why married couples begin to look like each other over a period of years? Watching couples in their 70s and 80s who have been married over 50 years and they could pass for brother and sister. It is sort of eery and not a little frightening at times. Why does this happen?
It has to do with facial expressions. Years of staring at each other and learning each others face changes and we begin to take on the facial expressions of the partner. This then results in a similar look and response to the same stimuli. While at first married couples retain individuality, eventually the give and take of relationships shows up in a sharing of facial expressions. Fascinating to say the least.
Take a few minutes to think of your own facial expressions in response to certain stimuli. Do you react the same when alone as you do in public? If you are being seen by someone or are in a group, do you demonstrate the same face as you do in private? Doubtful. We are all products of the social environment in which we reside. We may not intend to demonstrate a particular face or respond in a certain way to an external stimuli, but everyone does. Do we react exactly the same way when alone?
Joel does. He does not put on a face to prove his emotion to others. His facial expressions are natural and not contrived in any sense. He is not trying to impress anyone at anytime. He simply acts and looks according to his own inside theater devoid of external pressures of social norms. While sociologists and psychologists disagree about the nature of facial expressions as to whether they are learned, cultural, or innate, the truth is that we respond to others and express ourselves through our faces.
Unknown to him, I watched him one night in his room as he was in bed getting ready to go to sleep. He was talking to himself and obviously concerned about a couple of things. I think I heard something about getting Mexican food and not steak at a restaurant (he always prefers Mexican food over everything else). As he expressed himself, his face did alter some, nothing dramatic but certainly obvious to me. And yet his face did not match his words, at least in the normal social expectations. He registers emotions but it is not easy to tell what the emotion is.
Most of us have developed expressions matching our situation or at least demonstrating what we want others to know. In some instances I might hide my emotion with a false smile or I might even pretend to be upset for a reason (like when my children would sneak cookies before dinner) or I might feign confusion in order for the person to clarify the statement. Yet all these facial expressions are somewhat manipulative or at least artificial to an extent. Other times our faces simply register honest feelings--fear, joy, love, stress, pain, etc.
Yet an autistic person does not benefit from knowing what those faces should be. He does not develop particular expressions to match his emotion. Therefore what you see is what is most likely the most natural, devoid of any kind of social contract theory. It makes for great difficulty in assessing the feelings of the individual.
Joel recently acquired a new cell phone. It is sleek, fancy, full of games, a nice screen, and generally very advanced. He said he liked it and I believed him, but his face did not display that pleasure. We are used to this having experienced years of opening presents without hearing or seeing the joy that normally comes from that. Yet it was a little disconcerting to me. So I asked him forthright if he liked his phone. He said yes and I told him I wish he would express his joy and happiness. He thought for a minute and jumped three times with his hands in the air. That was good enough for me and made me laugh.
We should not be deceived by the lack of "accurate" and expected facial expressions to emotions. Autistics do not and will not respond according to a social norm. But they do experience emotions, strong ones, and they do have joy, sorrow, fear, and a plethora of feelings like any other human. Yet their feelings are not manifested in facial expressions typical of our expectations.
Now let's discuss body language.
It has to do with facial expressions. Years of staring at each other and learning each others face changes and we begin to take on the facial expressions of the partner. This then results in a similar look and response to the same stimuli. While at first married couples retain individuality, eventually the give and take of relationships shows up in a sharing of facial expressions. Fascinating to say the least.
Take a few minutes to think of your own facial expressions in response to certain stimuli. Do you react the same when alone as you do in public? If you are being seen by someone or are in a group, do you demonstrate the same face as you do in private? Doubtful. We are all products of the social environment in which we reside. We may not intend to demonstrate a particular face or respond in a certain way to an external stimuli, but everyone does. Do we react exactly the same way when alone?
Joel does. He does not put on a face to prove his emotion to others. His facial expressions are natural and not contrived in any sense. He is not trying to impress anyone at anytime. He simply acts and looks according to his own inside theater devoid of external pressures of social norms. While sociologists and psychologists disagree about the nature of facial expressions as to whether they are learned, cultural, or innate, the truth is that we respond to others and express ourselves through our faces.
Unknown to him, I watched him one night in his room as he was in bed getting ready to go to sleep. He was talking to himself and obviously concerned about a couple of things. I think I heard something about getting Mexican food and not steak at a restaurant (he always prefers Mexican food over everything else). As he expressed himself, his face did alter some, nothing dramatic but certainly obvious to me. And yet his face did not match his words, at least in the normal social expectations. He registers emotions but it is not easy to tell what the emotion is.
Most of us have developed expressions matching our situation or at least demonstrating what we want others to know. In some instances I might hide my emotion with a false smile or I might even pretend to be upset for a reason (like when my children would sneak cookies before dinner) or I might feign confusion in order for the person to clarify the statement. Yet all these facial expressions are somewhat manipulative or at least artificial to an extent. Other times our faces simply register honest feelings--fear, joy, love, stress, pain, etc.
Yet an autistic person does not benefit from knowing what those faces should be. He does not develop particular expressions to match his emotion. Therefore what you see is what is most likely the most natural, devoid of any kind of social contract theory. It makes for great difficulty in assessing the feelings of the individual.
Joel recently acquired a new cell phone. It is sleek, fancy, full of games, a nice screen, and generally very advanced. He said he liked it and I believed him, but his face did not display that pleasure. We are used to this having experienced years of opening presents without hearing or seeing the joy that normally comes from that. Yet it was a little disconcerting to me. So I asked him forthright if he liked his phone. He said yes and I told him I wish he would express his joy and happiness. He thought for a minute and jumped three times with his hands in the air. That was good enough for me and made me laugh.
We should not be deceived by the lack of "accurate" and expected facial expressions to emotions. Autistics do not and will not respond according to a social norm. But they do experience emotions, strong ones, and they do have joy, sorrow, fear, and a plethora of feelings like any other human. Yet their feelings are not manifested in facial expressions typical of our expectations.
Now let's discuss body language.
The Little Routines--II
We have established the need for routine in dealing with autistic children and this idea really does not change from childhood into adult. Often the routines alter but the important thing to remember is to keep the routine even in the variation. For years composers have used a technique in music called "variation technique" that allows for the music to alter in different ways, often substantially or in some cases minimally, yet maintaining some kind of unifying element to the original theme. The melody may stay the same or the harmony may stay the same or the rhythm or something that recalls the original theme. This same idea can be practiced in dealing with autism.
We practice routines in order to give Joel stability in the world, something familiar that takes away the deep fears that may be within him. The routine makes the statement that all is well and all will be fine and the world is the same place it was yesterday. The event may alter slightly and it may be varied from how it was yesterday but it retains enough similarities to give it the familiarity that is needed.
For several years now Joel and I have some routines that while they do change some, have more or less remained. "Hey Joel," I say. "Hey Dad," he responds. We do this everyday and have for years. After his shower, he comes with wet hair and I always say, "Joel, it is time to take a ...." Joel always completes the sentence with a fast "Shower." This routine started with me pretending to be shocked he had actually taken a shower. It now is a necessary game that happens every night.
Other routines include the thumbs up to each other, the comical face to him, the broken finger game, the "I swallowed a pencil" joke, and the list goes on and on. All these things and more provide an absolutely necessary sense of order for Joel. Other things such as brushing teeth, combing hair, putting on clothes, tying shoes, washing hands, are all part of the routine of the day. We also enjoy the odd wave that occurs at a distance (this is a funny one since Joel will wave at me regardless of where I am or what I am doing).
Joel also develops routines with friends including, "How tall are you?" or special handshakes, or text messaging. All these and more serve as reminders to him that the world is stable, that love surrounds him, that there may be some bad things but the good things happen every day. Joel's need to hear music, play music, and talk to his family adds to the ever present need for routine and familiarity.
For the non-autistic, such routines could become commonplace, dull, lacking in spirit, missing the element of spontaneity. Most of us seek adventure in some form or another. But for the autistic, adventure is not found in the new, it is found in the comfortable.
We practice routines in order to give Joel stability in the world, something familiar that takes away the deep fears that may be within him. The routine makes the statement that all is well and all will be fine and the world is the same place it was yesterday. The event may alter slightly and it may be varied from how it was yesterday but it retains enough similarities to give it the familiarity that is needed.
For several years now Joel and I have some routines that while they do change some, have more or less remained. "Hey Joel," I say. "Hey Dad," he responds. We do this everyday and have for years. After his shower, he comes with wet hair and I always say, "Joel, it is time to take a ...." Joel always completes the sentence with a fast "Shower." This routine started with me pretending to be shocked he had actually taken a shower. It now is a necessary game that happens every night.
Other routines include the thumbs up to each other, the comical face to him, the broken finger game, the "I swallowed a pencil" joke, and the list goes on and on. All these things and more provide an absolutely necessary sense of order for Joel. Other things such as brushing teeth, combing hair, putting on clothes, tying shoes, washing hands, are all part of the routine of the day. We also enjoy the odd wave that occurs at a distance (this is a funny one since Joel will wave at me regardless of where I am or what I am doing).
Joel also develops routines with friends including, "How tall are you?" or special handshakes, or text messaging. All these and more serve as reminders to him that the world is stable, that love surrounds him, that there may be some bad things but the good things happen every day. Joel's need to hear music, play music, and talk to his family adds to the ever present need for routine and familiarity.
For the non-autistic, such routines could become commonplace, dull, lacking in spirit, missing the element of spontaneity. Most of us seek adventure in some form or another. But for the autistic, adventure is not found in the new, it is found in the comfortable.
Monday, August 23, 2010
The Little Routines--I
Joel requires routine in his life. He needs the routines that establish the order of events and give him a sense of stability and love. Without a system, a sequential approach to daily living, he becomes uncomfortable, insecure, edgy, fearful, and emotionally distraught. While this is generally true for people, for an autistic child it is even more pronounced.
Routines do not have to be nor should they be restrictive. They, instead, give a unification to a world that appears to be a random mess. Very little about the world makes sense to a autistic person. It all seems nebulous, frightening, unusual, and completely unpredictable. Very little stays the same every day and it all appears to have changed from the day before. This makes for an existence that could be paranoid and schizophrenic. Instead, many autistics simply prefer a withdrawn personality that is absolutely trusting when confronted. This appears to be ironic at first look, but makes sense in the thought processing of an autistic. If the world is scary, why not deny it and live happily in your own existence, rejecting those things that are threatening. An odd attitude, but think of it this way: if you see a black widow, you know to stay away from it. If you see a black widow, turn away and then turn back, you hope to see it again. But if you don't, you ought to be nervous.
But the autistic is not only not nervous, he also is no longer aware of the existence of the spider in the world. Out of sight, out of mind is the practice for an autistic. Because of this lack of a concept of danger, the next time he sees the spider or any spider, it poses no threat in his mind. I suppose if the spider bit him, he would then be hesitant about spiders, but that is a learned response from experience not from instincts. Not that he is unaware of danger entirely (although know that there is very little instinctual awareness of danger in an autistic's makeup) for he knows to look both ways when crossing a street, and the bark of dog is a little frightening to him. But in general he trusts everyone and all things. It makes for a happy, unaware existence and one in which all of us are envious in many ways.
I recall the children's story about the sister who told her parents that her brother "talked to a stranger." The Dad was horrified and proceeded to tell his little boy about the dangers of strangers and the awful things that could happen to him. The boy became frightened of everyone and everything and the world then looked like a dark foreboding place at every turn. The Mom, of course, fixed this by pointing out that good things in the world and how it is wise to be cautious and a little wary at times but for the most part life is grand and we should not be frightened of everyone. A funny little story to remind us to look at the world optimistically when we can but don't avoid realism when necessary.
For Joel, and many autistics, he cannot see the world realistically but instead see it under a different lens. A view that is ordered, positive, comfortable, rosy, and predictable. Back to the routine idea, Joel needs an ordered system to provide a strong sense of stability to his world. Without it, all is frightening, dark, cloudy, mysterious, and confusing.
Routines do not have to be nor should they be restrictive. They, instead, give a unification to a world that appears to be a random mess. Very little about the world makes sense to a autistic person. It all seems nebulous, frightening, unusual, and completely unpredictable. Very little stays the same every day and it all appears to have changed from the day before. This makes for an existence that could be paranoid and schizophrenic. Instead, many autistics simply prefer a withdrawn personality that is absolutely trusting when confronted. This appears to be ironic at first look, but makes sense in the thought processing of an autistic. If the world is scary, why not deny it and live happily in your own existence, rejecting those things that are threatening. An odd attitude, but think of it this way: if you see a black widow, you know to stay away from it. If you see a black widow, turn away and then turn back, you hope to see it again. But if you don't, you ought to be nervous.
But the autistic is not only not nervous, he also is no longer aware of the existence of the spider in the world. Out of sight, out of mind is the practice for an autistic. Because of this lack of a concept of danger, the next time he sees the spider or any spider, it poses no threat in his mind. I suppose if the spider bit him, he would then be hesitant about spiders, but that is a learned response from experience not from instincts. Not that he is unaware of danger entirely (although know that there is very little instinctual awareness of danger in an autistic's makeup) for he knows to look both ways when crossing a street, and the bark of dog is a little frightening to him. But in general he trusts everyone and all things. It makes for a happy, unaware existence and one in which all of us are envious in many ways.
I recall the children's story about the sister who told her parents that her brother "talked to a stranger." The Dad was horrified and proceeded to tell his little boy about the dangers of strangers and the awful things that could happen to him. The boy became frightened of everyone and everything and the world then looked like a dark foreboding place at every turn. The Mom, of course, fixed this by pointing out that good things in the world and how it is wise to be cautious and a little wary at times but for the most part life is grand and we should not be frightened of everyone. A funny little story to remind us to look at the world optimistically when we can but don't avoid realism when necessary.
For Joel, and many autistics, he cannot see the world realistically but instead see it under a different lens. A view that is ordered, positive, comfortable, rosy, and predictable. Back to the routine idea, Joel needs an ordered system to provide a strong sense of stability to his world. Without it, all is frightening, dark, cloudy, mysterious, and confusing.
Saturday, August 21, 2010
Instincts of a Mother--helping your child
An autism conference is one of the most enlightening experiences a parent can have. Exhibits, sessions, recommendations, suggestions, and unlimited ideas abound, each one expounding the benefits of a particular method for helping autistic children. And I attended and examined each method as thoroughly as possible, seeking, like all parents, an answer to helping Joel, autistic since birth.
Each method has the distinction of being helpful if not for itself but at the very least for the placebo effect (which cannot be denied nor ignored for its validity). Parents ought to explore and commit themselves to examining each method with the idea of finding the "magic" cure for autism. But sadly, it will not be found. There is no magic cure for the disability. This truth however does not preclude the amazing benefits of each method, and parents need to know for themselves how each system helps. Vitamins, nutrition, behavior modification, Hyperbolic, exercise, physical therapy, speech therapy, reading specialists, music therapy, and a host of medication all forms just some of the necessary procedures for helping your autistic child.
But in the end there are two things that should never be forgotten and these two things are interrelated. 1) Never giving up on your child and believing in him or her and 2) The unparalleled and ubiquitous instincts of a mother for her children. Obviously there are bad mothers in the world and awful situations that prevent autistic children from being loved by their parents, but for most children there is a woman who loves them in spite of their challenges and who will never give up trying to help them. With this devoted and cherished love comes instincts for motherhood that should always be considered at the very top of the methods for helping autistic children.
Mothers know when their children are seriously ill, emotionally distraught, putting on an act, frightened, joyful, developing a problem, or need to eat. They know when children are teething, have a diaper problem, struggling in a relationship, are resentful, are excited, wary, cautious, or too accepting. There is a bond between a mother and her child that nothing can sever. The instinctual feelings that a mother has for what her child needs and what he or she is experiencing is so strong as to be nearly supernatural. The synergy is often so closely tied as to create a projection of success in spite of contrary evidence. In other words, a mother is often desperate enough for her child to progress that she can cause progress by sheer desire. This is the power of the placebo effect in improving disabled children.
Obviously the placebo effect does not have long range gain, but even short term improvement speaks volumes for the method. And so Dads throughout the world, when you are doubt of what is wrong with the child, turn to the Mom. She probably has a good idea and likely knows the best treatment. This message is for physicians as well.
Each method has the distinction of being helpful if not for itself but at the very least for the placebo effect (which cannot be denied nor ignored for its validity). Parents ought to explore and commit themselves to examining each method with the idea of finding the "magic" cure for autism. But sadly, it will not be found. There is no magic cure for the disability. This truth however does not preclude the amazing benefits of each method, and parents need to know for themselves how each system helps. Vitamins, nutrition, behavior modification, Hyperbolic, exercise, physical therapy, speech therapy, reading specialists, music therapy, and a host of medication all forms just some of the necessary procedures for helping your autistic child.
But in the end there are two things that should never be forgotten and these two things are interrelated. 1) Never giving up on your child and believing in him or her and 2) The unparalleled and ubiquitous instincts of a mother for her children. Obviously there are bad mothers in the world and awful situations that prevent autistic children from being loved by their parents, but for most children there is a woman who loves them in spite of their challenges and who will never give up trying to help them. With this devoted and cherished love comes instincts for motherhood that should always be considered at the very top of the methods for helping autistic children.
Mothers know when their children are seriously ill, emotionally distraught, putting on an act, frightened, joyful, developing a problem, or need to eat. They know when children are teething, have a diaper problem, struggling in a relationship, are resentful, are excited, wary, cautious, or too accepting. There is a bond between a mother and her child that nothing can sever. The instinctual feelings that a mother has for what her child needs and what he or she is experiencing is so strong as to be nearly supernatural. The synergy is often so closely tied as to create a projection of success in spite of contrary evidence. In other words, a mother is often desperate enough for her child to progress that she can cause progress by sheer desire. This is the power of the placebo effect in improving disabled children.
Obviously the placebo effect does not have long range gain, but even short term improvement speaks volumes for the method. And so Dads throughout the world, when you are doubt of what is wrong with the child, turn to the Mom. She probably has a good idea and likely knows the best treatment. This message is for physicians as well.
The trials and patience
Sitting in McDonalds this morning enjoying a cup of coffee, I am reminded of the time many years ago when I came to this same establishment with a friend and two of my boys--Joel and Jordan. They were quite young, maybe 3 and 6 or so with Joel being the oldest. My friend and I decided to get a cup of coffee and I thought the boys would enjoy a pancake and orange juice.
Taking their orders, getting their drinks, and setting them down in a booth, I returned to the counter to get the rest of the food. Suddenly I and everyone in McDonalds heard a blood-curdling scream that made everyone jump, fearing the worst. Joel and Jordan had an altercation in the manner that most boys have, particularly brothers (believe it or not, I had a few with my brother here and there). It was sort of variation on property rights and seat location--"I want to sit here." "No, this is my spot." "My juice is here." "That's my juice," etc. While we try to teach our children of the time and place for altercations and we certainly we want instill in children a sense of public decorum, children do not always subscribe to the adult models.
We have all experienced the bad behavior of children and we inevitably find ourselves in judgment over the handling of that behavior. Rather than blame the child, we generally look at the parent in disgust, wondering why that parent cannot handle the situation better. There may be a part of us that knows children are unpredictable and that even the finest parenting skills cannot solve all problems, yet we still tend to pass judgment, in a form of removal and assigning responsibility. This is a major issue facing parents of autistic children and one that will be addressed more later.
Back to the problem at hand. Joel's inappropriate scream was beyond that of a normal 6 year old frustrated with his brother. It was a scream disproportionate to the situation, a variation of the schizophrenic emotional outburst not matching the stimulus. Whatever...it was loud and scary. In a mixture of horror and amusement, I quickly moved to the boys, hugged Joel to get him calmed down, solved the problem, and assuaged the grave concern of the customers present. All was well.
This scene is typical of the kind of thing we faced as parents of an autistic child. Joel could not, and still has trouble, contain his own emotional reactions. When a situation did not match his expectations, when the order became disordered, when the prescription failed, he reacted in the extreme. We did not know when that would happen or even what to do. But it taught us to be prepared, to work at meeting his expectations, and to remain isolated when possible. Medication has helped him but he still struggles a bit with this, now manifesting itself in other challenges.
We learned patience, preparation, and protection in our raising of Joel. This is part of the joys and sorrows of having an autistic child.
Taking their orders, getting their drinks, and setting them down in a booth, I returned to the counter to get the rest of the food. Suddenly I and everyone in McDonalds heard a blood-curdling scream that made everyone jump, fearing the worst. Joel and Jordan had an altercation in the manner that most boys have, particularly brothers (believe it or not, I had a few with my brother here and there). It was sort of variation on property rights and seat location--"I want to sit here." "No, this is my spot." "My juice is here." "That's my juice," etc. While we try to teach our children of the time and place for altercations and we certainly we want instill in children a sense of public decorum, children do not always subscribe to the adult models.
We have all experienced the bad behavior of children and we inevitably find ourselves in judgment over the handling of that behavior. Rather than blame the child, we generally look at the parent in disgust, wondering why that parent cannot handle the situation better. There may be a part of us that knows children are unpredictable and that even the finest parenting skills cannot solve all problems, yet we still tend to pass judgment, in a form of removal and assigning responsibility. This is a major issue facing parents of autistic children and one that will be addressed more later.
Back to the problem at hand. Joel's inappropriate scream was beyond that of a normal 6 year old frustrated with his brother. It was a scream disproportionate to the situation, a variation of the schizophrenic emotional outburst not matching the stimulus. Whatever...it was loud and scary. In a mixture of horror and amusement, I quickly moved to the boys, hugged Joel to get him calmed down, solved the problem, and assuaged the grave concern of the customers present. All was well.
This scene is typical of the kind of thing we faced as parents of an autistic child. Joel could not, and still has trouble, contain his own emotional reactions. When a situation did not match his expectations, when the order became disordered, when the prescription failed, he reacted in the extreme. We did not know when that would happen or even what to do. But it taught us to be prepared, to work at meeting his expectations, and to remain isolated when possible. Medication has helped him but he still struggles a bit with this, now manifesting itself in other challenges.
We learned patience, preparation, and protection in our raising of Joel. This is part of the joys and sorrows of having an autistic child.
Monday, August 16, 2010
The clue to the middle name problem
We have never quite been able to discern the reason for his abhorrence, but the fact has remained for years that he just does not like his middle name. It is Arlitt--Joel Arlitt Tucker. Arlitt is a strong family name of German descent that eventually settled in much of Texas. It is a name to lift up and be proud, a name signifying strength and success. But he does not like it, never has, and we do not know why.
Finally in a fit of mild rage, Joel asked why everyone else has a middle name that begins with a consonant but his begins with a vowel. Often Joel's unusual statements that come out of the blue leave us perplexed, curious as to what he means, desperately wishing we could get inside his head to learn more. His statement about consonants and vowels was different, causing us to stare at him in wonderment. Further questioning revealed that everyone he knows has a middle name that begins in a consonant and it is not fair that his middle name begins with a vowel. He then said he prefers consonants over vowels.
I don't believe he hates vowels and probably looks at vowels as fillers for the rest of the word, but obviously he is more comfortable with consonants. I have known ranchers who preferred goats over sheep but didn't necessarily hate the sheep but did certainly like goats better. I guess that is another story though. Anyway, for whatever reason Joel prefers consonants over vowels and wishes his middle name started with a consonant. I threw out some options, none of which made any sense (particularly starting Arlitt with H was disconcerting!).
Finally I explained to Joel that had we known of his preference, we would not have named him Arlitt. He did not seem to understand this at all. Perhaps his lack of time understanding or the strange idea that what he thinks he assumes everyone thinks. Or maybe that nobody in his right mind would want a middle name that starts with a vowel. Whatever the reason he correctly blames us for the poor naming job we did years ago.
I suspect this problem will remain forever and other than not using his name or even referencing or making a legal request, I do not think this situation will change. In some ways, however, it is simply another example of how Joel must learn to cope with things that do not meet his expectations. In truth, life is often like that whether autistic or not. Unfortunately it becomes exaggerated for autistics.
Finally in a fit of mild rage, Joel asked why everyone else has a middle name that begins with a consonant but his begins with a vowel. Often Joel's unusual statements that come out of the blue leave us perplexed, curious as to what he means, desperately wishing we could get inside his head to learn more. His statement about consonants and vowels was different, causing us to stare at him in wonderment. Further questioning revealed that everyone he knows has a middle name that begins in a consonant and it is not fair that his middle name begins with a vowel. He then said he prefers consonants over vowels.
I don't believe he hates vowels and probably looks at vowels as fillers for the rest of the word, but obviously he is more comfortable with consonants. I have known ranchers who preferred goats over sheep but didn't necessarily hate the sheep but did certainly like goats better. I guess that is another story though. Anyway, for whatever reason Joel prefers consonants over vowels and wishes his middle name started with a consonant. I threw out some options, none of which made any sense (particularly starting Arlitt with H was disconcerting!).
Finally I explained to Joel that had we known of his preference, we would not have named him Arlitt. He did not seem to understand this at all. Perhaps his lack of time understanding or the strange idea that what he thinks he assumes everyone thinks. Or maybe that nobody in his right mind would want a middle name that starts with a vowel. Whatever the reason he correctly blames us for the poor naming job we did years ago.
I suspect this problem will remain forever and other than not using his name or even referencing or making a legal request, I do not think this situation will change. In some ways, however, it is simply another example of how Joel must learn to cope with things that do not meet his expectations. In truth, life is often like that whether autistic or not. Unfortunately it becomes exaggerated for autistics.
Friday, August 13, 2010
Resignation of a Pastor
I just heard of a pastor of a church resigning. He stood in the pulpit and gave a brief, pointed, and emotional statement to the church that he did not measure up to the Biblical standard of pastoral leadership. He resigned with apologies to the church, his family, and to God. He told some that he wanted and needed time to get his heart right with God again. After hearing about this, my immediate reaction was that it was all rather sudden and seemed overly reactive to a relatively personal problem. Yet further reflection is taking me down the road of admiration.
Some mentioned that while spending time in ministry within the church, the pastor found himself in a closer relationship than his profession and commitment to his family allowed. It made for several moments of emotional upheaval and his response was to put on the brakes and go in another direction. He felt the vehicle begin to accelerate down the path of which there is no return and rather than serve his own selfishness and human desires, he recognized the immense pain of the destination and suddenly without warning stopped. The other person did the same. In thinking about this, I wondered if some kind of private counseling and "rehabilitation" of his emotional state would have been in order, but I can now see how the abrupt resignation and decision to go the other way is the right one.
I recall being a youngster on a camp out in the mountains. I thought it would be funny to run on the rocks, demonstrating my amazing athletic prowess. I was probably about 6 years old I think. Anyway I began to run and jump laughing about how easy it was. Unfortunately I headed downhill, getting faster and faster until it became obvious I couldn't stop and was headed for the edge of the mountain. The fall over the edge would have been the end of a stellar athletic career not to mention a life. As I reached the point of total destruction a man stepped over and caught me, saving my life.
There are countless examples of people with potential who through a series of poor decisions ruined their lives and the lives of others. Dating back to Judas who betrayed Christ only to follow it up with suicide, to modern examples of excessive drug use or alcohol abuse or various addictions that destroy the body, man continues to find ways to self-destruct. While we tend to operate on a tight wire, there is a human tendency to want to fall to our own death. As we look upon the Grand Canyon, we wonder if we could fly over the canyon with our hands. Man's inherent desire to fulfill his sinful nature is sometimes but not always trumped by his instinctual self-preservation. These dichotomous inclinations are in constant battle. We fight the good, often giving way to the bad. The light of our life can be lost in a second of weakness to the dark, demonstrating our amazing ability to ruin and pervert that which we have been given.
Back to the pastor. He got close to the edge, looked down the canyon and wondered if he could fly. But in a lucid moment, a moment in eternal time, a moment of self-awareness and reflection, he turned and went the other way. He saved himself, his family, his life, and made the decision to do the right thing. The precipice of disaster, the poisonous soup with the enticing odor, the bacteria masking itself as candy, all these things and more were seen and resisted by both parties involved. Temptation often creeps in slowly, displaying itself rather innocuously, hiding itself in what at first appears normal. Yet a deeper look reveals the truth. Our actions are a manifestation of our heart and while their hearts may have had some weakness, in the end was strong, leading them to the right decision. A painful one, but one all involved agreed was correct.
It took courage, conviction, perception, and determination, but he did it. He won the battle, turned and went the other direction. His life is an example of how dangerously close we often are to a poor decision, but his story is one of optimism and an example for everyone.
God is there to help us make the right decision and it is our responsibility to seek him. As it says in Micah, God requires us to be kind, to be fair, and to be humble. These three things can help us as we walk on the tightrope of life.
Some mentioned that while spending time in ministry within the church, the pastor found himself in a closer relationship than his profession and commitment to his family allowed. It made for several moments of emotional upheaval and his response was to put on the brakes and go in another direction. He felt the vehicle begin to accelerate down the path of which there is no return and rather than serve his own selfishness and human desires, he recognized the immense pain of the destination and suddenly without warning stopped. The other person did the same. In thinking about this, I wondered if some kind of private counseling and "rehabilitation" of his emotional state would have been in order, but I can now see how the abrupt resignation and decision to go the other way is the right one.
I recall being a youngster on a camp out in the mountains. I thought it would be funny to run on the rocks, demonstrating my amazing athletic prowess. I was probably about 6 years old I think. Anyway I began to run and jump laughing about how easy it was. Unfortunately I headed downhill, getting faster and faster until it became obvious I couldn't stop and was headed for the edge of the mountain. The fall over the edge would have been the end of a stellar athletic career not to mention a life. As I reached the point of total destruction a man stepped over and caught me, saving my life.
There are countless examples of people with potential who through a series of poor decisions ruined their lives and the lives of others. Dating back to Judas who betrayed Christ only to follow it up with suicide, to modern examples of excessive drug use or alcohol abuse or various addictions that destroy the body, man continues to find ways to self-destruct. While we tend to operate on a tight wire, there is a human tendency to want to fall to our own death. As we look upon the Grand Canyon, we wonder if we could fly over the canyon with our hands. Man's inherent desire to fulfill his sinful nature is sometimes but not always trumped by his instinctual self-preservation. These dichotomous inclinations are in constant battle. We fight the good, often giving way to the bad. The light of our life can be lost in a second of weakness to the dark, demonstrating our amazing ability to ruin and pervert that which we have been given.
Back to the pastor. He got close to the edge, looked down the canyon and wondered if he could fly. But in a lucid moment, a moment in eternal time, a moment of self-awareness and reflection, he turned and went the other way. He saved himself, his family, his life, and made the decision to do the right thing. The precipice of disaster, the poisonous soup with the enticing odor, the bacteria masking itself as candy, all these things and more were seen and resisted by both parties involved. Temptation often creeps in slowly, displaying itself rather innocuously, hiding itself in what at first appears normal. Yet a deeper look reveals the truth. Our actions are a manifestation of our heart and while their hearts may have had some weakness, in the end was strong, leading them to the right decision. A painful one, but one all involved agreed was correct.
It took courage, conviction, perception, and determination, but he did it. He won the battle, turned and went the other direction. His life is an example of how dangerously close we often are to a poor decision, but his story is one of optimism and an example for everyone.
God is there to help us make the right decision and it is our responsibility to seek him. As it says in Micah, God requires us to be kind, to be fair, and to be humble. These three things can help us as we walk on the tightrope of life.
Wednesday, August 04, 2010
Thinking in pictures and ordered by numbers
Joel, our autistic 20 year old son, thinks in pictures and places everything in some sort of order. This is true in almost all instances from packing for a trip to words to music to eating, he orders his world, forcing it into a system that makes sense to him. Rather than responding to his sense needs, he responds to his unique need to have things prescribed and organized. This does not mean he is devoid of senses, but it does mean that the sensing is established as something familiar and orderly. New and unidentified smells concern him and events outside his mental framework are uncomfortable. A word not normally used becomes associated with a similar word, thus giving it absolution and a residence from which to draw.
After work, he works at the downtown public library, Joel seemed somewhat agitated and uncomfortable with his current state of affairs. For some reason this particular day at the library resulted in his having to shelve around 120 books. A normal day at the library involves around 40 books, so 120 is way beyond the expectation. Because of the volume of books, Joel did not complete his assignment until about 4:30 which is approximately 1 1/2 hours later than usual. His initial plan to practice organ at 3:30 was altered by the excessive amount of work to do at the library. In his irritated state, he demanded to practice organ although it was time to go home. The time issue was not as important as the need to keep things in sequence.
Later that evening when he was much calmer, I mentioned to him that he seemed quite flustered after work. He thought for a minute and said that he did not agree with me. He then said that he was a word with 10 letters rather than 9. Thinking through that odd statement, I asked him if he wasn't flustered, then what was he? He smiled and said he was frustrated. I then counted the letters in the word frustrated and discovered all my fingers were used up, revealing that indeed the word frustrated has 10 letters.
As I processed this unusual conversation, it occurred to me that perhaps Joel knows the number of letters in words that are spoken. I then asked him the number of letters in several long words, he responded quickly and accurately in all cases. Joel's words he says and hears from others are categorized in terms of numbers of letters. He sees the words in his mind according to their length before applying meaning. It is an odd and probably useless skill, but it does signify how Joel listens and learns. This helps us as parents seeking to help him cope in a difficult world.
He thinks in pictures, shapes, and in sequence, working to put things in order, and making things fit the puzzle piece before making sense of it. While we tend to see the larger picture and then put the pieces in place, Joel cannot always see the larger picture but can understand the individual pieces. Approaching conversations in more minute and specific ways means Joel can grasp the purpose of the word or sentence which in turn allows him a quicker understanding of the concept.
Good to know as we continue to train him to take care of himself as much as possible.
After work, he works at the downtown public library, Joel seemed somewhat agitated and uncomfortable with his current state of affairs. For some reason this particular day at the library resulted in his having to shelve around 120 books. A normal day at the library involves around 40 books, so 120 is way beyond the expectation. Because of the volume of books, Joel did not complete his assignment until about 4:30 which is approximately 1 1/2 hours later than usual. His initial plan to practice organ at 3:30 was altered by the excessive amount of work to do at the library. In his irritated state, he demanded to practice organ although it was time to go home. The time issue was not as important as the need to keep things in sequence.
Later that evening when he was much calmer, I mentioned to him that he seemed quite flustered after work. He thought for a minute and said that he did not agree with me. He then said that he was a word with 10 letters rather than 9. Thinking through that odd statement, I asked him if he wasn't flustered, then what was he? He smiled and said he was frustrated. I then counted the letters in the word frustrated and discovered all my fingers were used up, revealing that indeed the word frustrated has 10 letters.
As I processed this unusual conversation, it occurred to me that perhaps Joel knows the number of letters in words that are spoken. I then asked him the number of letters in several long words, he responded quickly and accurately in all cases. Joel's words he says and hears from others are categorized in terms of numbers of letters. He sees the words in his mind according to their length before applying meaning. It is an odd and probably useless skill, but it does signify how Joel listens and learns. This helps us as parents seeking to help him cope in a difficult world.
He thinks in pictures, shapes, and in sequence, working to put things in order, and making things fit the puzzle piece before making sense of it. While we tend to see the larger picture and then put the pieces in place, Joel cannot always see the larger picture but can understand the individual pieces. Approaching conversations in more minute and specific ways means Joel can grasp the purpose of the word or sentence which in turn allows him a quicker understanding of the concept.
Good to know as we continue to train him to take care of himself as much as possible.
Monday, August 02, 2010
Childhood to Adult--the Convincing Conundrum
Using every educational technique available to us, just like all caring parents, we try to convince Joel what to do and how to adjust. This was true when he was a child and remains true today. Often it seems hopeless while at other times it actually happens. But we hold our breaths when he won't be convinced.
Some of the problem is his stubbornness, a character trait that is not unique to autistics and certainly not applied to all children with autism. He gets locked into an idea and will not let go of the concept regardless of the level of reasoning presented. Once it is in head, that is the way it is and no amount of convincing otherwise will alter that idea. It makes for extremely stressful moments and arguments without a good result.
Is it his personality? Is it due to autism? Is it the lack of maturation or cognitive development? Perhaps a combination of all these leads to the behavior. Joel has times of compliance and acceptance of the circumstances around him, but other times of resistance. It is the resistant times that makes our lives difficult and reminds us of the ongoing challenges of raising an autistic child.
Do you need some examples? Okay, here you go. Shower time--always a battle. He has no conception of time and often lets the shower run for 20-30 minutes without getting in. This means we have to monitor him to get it done. Clothes--he insists on dressing up including a tie even on days where it is not appropriate, like to a football game. Playing organ--he believes it is his right and obligation to practice everyday after work. Some days don't allow for that so he gets very upset about the change in schedule. Little things like wanting an RC cola, or packing for a trip a week early, or eating a whole bag of chips and hot sauce, or pouring half the chocolate syrup into the milk. All these and more tend to become major battles of concern for him. While we often give in for the sake of harmony, other times we work to teach him why it is best to do something different.
Yet the truth remains: if he is not receptive to reason, then all reasoning is in vain. So we try to get him to calm down, think rationally, see the bigger picture, and be less contentious about his own preconceived ideas. We try and sometimes succeed. This has been true for 20 years.
So it is a puzzle as to why Joel still has moments where he is insistent on certain things regardless of our efforts to convince him otherwise. It makes for tension and stress that families rarely experience. I suspect he will have these moments the rest of his life. Luckily, however, they do seem to be diminishing in frequency and in length. Just something for us to handle and always be aware of the potential of such times.
Some of the problem is his stubbornness, a character trait that is not unique to autistics and certainly not applied to all children with autism. He gets locked into an idea and will not let go of the concept regardless of the level of reasoning presented. Once it is in head, that is the way it is and no amount of convincing otherwise will alter that idea. It makes for extremely stressful moments and arguments without a good result.
Is it his personality? Is it due to autism? Is it the lack of maturation or cognitive development? Perhaps a combination of all these leads to the behavior. Joel has times of compliance and acceptance of the circumstances around him, but other times of resistance. It is the resistant times that makes our lives difficult and reminds us of the ongoing challenges of raising an autistic child.
Do you need some examples? Okay, here you go. Shower time--always a battle. He has no conception of time and often lets the shower run for 20-30 minutes without getting in. This means we have to monitor him to get it done. Clothes--he insists on dressing up including a tie even on days where it is not appropriate, like to a football game. Playing organ--he believes it is his right and obligation to practice everyday after work. Some days don't allow for that so he gets very upset about the change in schedule. Little things like wanting an RC cola, or packing for a trip a week early, or eating a whole bag of chips and hot sauce, or pouring half the chocolate syrup into the milk. All these and more tend to become major battles of concern for him. While we often give in for the sake of harmony, other times we work to teach him why it is best to do something different.
Yet the truth remains: if he is not receptive to reason, then all reasoning is in vain. So we try to get him to calm down, think rationally, see the bigger picture, and be less contentious about his own preconceived ideas. We try and sometimes succeed. This has been true for 20 years.
So it is a puzzle as to why Joel still has moments where he is insistent on certain things regardless of our efforts to convince him otherwise. It makes for tension and stress that families rarely experience. I suspect he will have these moments the rest of his life. Luckily, however, they do seem to be diminishing in frequency and in length. Just something for us to handle and always be aware of the potential of such times.
Sunday, August 01, 2010
Sex and appeal in Autism
Sexual desire cannot be denied even for autistic teenagers, but because of the socialization process, a process that is mysterious for autistics, sexual desire is natural rather than forced. This makes for an awkward enculturation and confusion of responses. How should he react?
Although heavily debated, there is no doubt that beauty is a shared response of collective wisdom and current trends. We notice that oil paintings in the 16th century and earlier show women to be rather curvy, often with layers of fat that we would now consider excessive. Since an autistic teenager does not learn from the socialization around him, his reactions to beauty are devoid of external influences at least to an extent. He learns by what he feels or is able to assimilate objectively. The curious need for truth and precision butts up against the artistic need for beauty. This means his sexual responses are not governed by what others tell him or what the media portrays but instead are lead from within.
And Joel, our autiistic 20 year old son, does not seek after bikini clad, thin blondes with large bosoms. Instead he responds, but not necessarily sexually, to young ladies who are nice to him. They are not always beautiful by modern standards but instead have the kind of authentic pleasantry that he seeks in people. This makes him separate the physical from the personal. Perhaps all of us intend this in our social circles, yet I suspect if the truth were revealed, we would discover a latent sexual agenda in many people.
For Joel and likely for many autistics, he is a sexual being not dependent on the looks of the opposite sex. It really means nothing to him and he is not able to judge anyone on the basis of appearance. His sexual desires are normal and a result of growing up, not a result of what anyone has told him, not a result of the media. He is in fact disturbed by nudity and not comfortable around the flirty kind of physical response of teenagers. He cannot act that way and therefore does not understand such behavior.
It is all refreshing to know that his sexuality is not dependent on seeing inappropriate pictures or watching a beautiful young lady, but is a natural growth of what is in him. While he cannot determine what the future holds, we are certain that he is not driven by the media's description of sex appeal. This is comforting for us. Now we need to help him understand himself. A taller order.
Although heavily debated, there is no doubt that beauty is a shared response of collective wisdom and current trends. We notice that oil paintings in the 16th century and earlier show women to be rather curvy, often with layers of fat that we would now consider excessive. Since an autistic teenager does not learn from the socialization around him, his reactions to beauty are devoid of external influences at least to an extent. He learns by what he feels or is able to assimilate objectively. The curious need for truth and precision butts up against the artistic need for beauty. This means his sexual responses are not governed by what others tell him or what the media portrays but instead are lead from within.
And Joel, our autiistic 20 year old son, does not seek after bikini clad, thin blondes with large bosoms. Instead he responds, but not necessarily sexually, to young ladies who are nice to him. They are not always beautiful by modern standards but instead have the kind of authentic pleasantry that he seeks in people. This makes him separate the physical from the personal. Perhaps all of us intend this in our social circles, yet I suspect if the truth were revealed, we would discover a latent sexual agenda in many people.
For Joel and likely for many autistics, he is a sexual being not dependent on the looks of the opposite sex. It really means nothing to him and he is not able to judge anyone on the basis of appearance. His sexual desires are normal and a result of growing up, not a result of what anyone has told him, not a result of the media. He is in fact disturbed by nudity and not comfortable around the flirty kind of physical response of teenagers. He cannot act that way and therefore does not understand such behavior.
It is all refreshing to know that his sexuality is not dependent on seeing inappropriate pictures or watching a beautiful young lady, but is a natural growth of what is in him. While he cannot determine what the future holds, we are certain that he is not driven by the media's description of sex appeal. This is comforting for us. Now we need to help him understand himself. A taller order.
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