Asperger Syndrome/Literal Language

Ben is an intelligent young man and has a wider vocabulary than many older adults. He thinks in concrete terms; so we have discovered he does not immediately understand idioms, sarcasm or some phrases that are meant to be funny. For example, he did not understand the phrase, “It’s raining cats and dogs.” Since he is now twenty years old, he has learned to recognize some of the common sayings. It is best to use plain language with him if we want him to completely understand what we are saying.
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Communicating with words is still difficult for Ben. Sometimes when we ask him, “What are you doing?” He will quickly say, “Nothing.” It is much easier to say “Nothing” than to use words to describe what he is doing. His short answers would be interpreted as lies by some people. But we have learned that it is much easier for him to say one short word than for him to go into detail. There are times when he is willing to communicate at length and we cherish those times.

Asperger Syndrome/What’s Next?

Ben functions much better when he knows what is going to happen next. That is one reason the schedule taped to his binder was very helpful. Even today, when I pick him up at the bus stop, he wants to know, “What are we going to do now?” If I mention that we need to go shopping he immediately rebels. However, if I say, “Ben, tomorrow when I pick you up at the bus stop, we need to go shopping.” He is much more willing to cooperate if he knows well ahead of time what is going to happen next. He definitely does not like “spur of the moment” plans.
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The same is true about touching Ben. He does not like to be surprised by a touch. Before I learned this fact, I poked him with my finger to get his attention. He said, “Don’t touch me like that!” Some might think he was being disrespectful, but I now know he was only protecting himself. Now I ask permission if I want to hug him and I get his attention in other ways.

Asperger Syndrome/Depression

I want to reiterate that not all Asperger’s Syndrome children are alike. I am simply telling my experiences with Ben, my grandson.
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Ben has suffered from depression since he was a young child. He struggles with it even today as a twenty-year old. Today I will include one of his own writings and each time I read it, I am grieved again when I think of his world.
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Ben’s Thoughts Written 11/6/05
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The Suffering: MY SCHOOL STORIES
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Remember in elementary school whenever you only had one teacher to worry about? I do, and right now, I know high schools across the U.S. are taking a beating, because apparently, high schoolers have to do 10 times the amount of work, and it is also 10X more frequent. My life is a constant barrage of not knowing what work to do, not knowing how to do the work I am aware of, not understanding how to keep up with my work, not understanding how and why I can’t do the work while expressing my opinions in it or about it, not being able to express while even sorting out through the whole mess…and OH YEAH! My social problems like, I don’t
know KNOWING I’M NEVER GOING TO BE GOOD ENOUGH FOR
ANYONE! NOT EVEN A GIRLFRIEND! Not to mention the fact that while Tm rotting my brain looking at the computer, all other kids my age are probably seeing movies with their friends or girlfriends. Til never experience that! I feel SO INCOMPLETE. I don’t even feel human anymore. Name one thing I could use to cure this….drugs, movies, happiness, ANYTHING! If all else fails, I will fail. Stress is like a sponge that soaks up your sanity. And mine is on the line. I can think about how things could be for me, but I never do! With only a few drops of sanity left, I’m not sure how much more “work” I can take. This, all of this, is just psychological torture solidified into hundreds of worksheets, projects, and tests I have to make up. I am on the edge of a gigantic cliff, and the work I have to do is the bulldozer that will push me all the way to the bottom which represents me losing the last of my sanity. If I have to stay at school until 10:00, let me stay! I will work. Or at least try.
I would sell my possessions – everything, even my bed – just to have a normal life. I know too much to be considered a teen. Disturbing things. Extremely pessimistic things. Nothing the “normal” teen could call common sense. But the one bit of knowledge I happen to lack is the one most important factor in growing up!! What they know is how to talk to other people without becoming shy, and talking to girls- everything normal males my age do. What I know is COMPLETELY IRRELEVANT. And that makes me bitter towards the people, everyone, regardless of gender, age, or stability. I am literally mentally decaying, and I’m the only one who sees it. I’m going to work full time to at least try to change it.

Helpful Hints for Asperger Children

One thing Ben’s mother learned to do was to print his schedule of classes and tape it to the outside of his binder. This definitely helped him get to the correct class and get there on time.
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Those specialists who work with Asperger students suggested we make detailed lists and post them where needed. This suggestion definitely helped. You may think that such a detailed list would not be necessary, but I assure you, it is necessary. Here is an example that was placed on the bathroom mirror:
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1. Get a clean towel and washcloth.
2. Get into shower and soap body thoroughly and rinse well.
3. Shampoo your hair.
4. Dry body completely with towel.
5. Brush your teeth.
6. Use deodorant under arms.
7. Get dressed using clean clothes.

Asperger Syndrome/The Umbrella

In Ben’s case, the diagnosis is Asperger’s Syndrome which can be understood as an umbrella. Underneath the umbrella he suffers from Attention Deficit Disorder. The ADD is very troublesome for him because he has trouble remembering important things, has a tendency to lose things, and is very unorganized.
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One teacher asked Ben to write a paragraph explaining why he did not bring his book nor his homework to class. Here is Ben’s paragraph:
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“I don’t have the work because lately I haven’t been
keeping track of my book. I’m sure it’s not lost. I
had so much things on my mind, I forgot. I really
should start keeping track of my things. There’s just
too much to do. I’m not really good at remembering
things, but I’ll try harder. It’s just after seven hours
of school, I get really tired. Then I watch TV or play
on the computer. I really do want to get good grades.
I just don’t try hard enough.”

Beware of Bullying

Bullying must be a common behavior that Asperger children must endure. I have read about other children who have had similar experiences as the one I am describing today.
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One day when Ben was in middle school, I was at his house when he came home from school. He was sobbing as he got off the bus because some of the students had been really mean to him. This is one of those times when his anger turned into rage. He said, “If I had a gun I would shoot them.” (He did not have access to a gun nor did he know how to use one.) Of course, I tried to calm him and reminded him of what would happen to him if he ever did such a thing or even threatened anything like that. He said, “Well, they deserve it.” Then he stopped crying and straightened his face and said, “Nana, I’m not that stupid.” I reassured him of his valuable worth and of my unconditional love for him. Soon he was feeling better.
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I have great concern for children like Ben who experience episodes similar to the one I have mentioned who maybe do not have understanding teachers or parents. These children have enough with which to deal without having to be hurt by bullying.

Asperger Incidents

Up until now, I have tried to tell about Ben in chronological order. From now on I will be recalling various incidents that happened related to his Asperger’s Syndrome diagnosis.
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The first day Ben began seventh grade in middle school, his mother found him crying as he was walking home from school. As she listened to him tell about his day, she discovered that the teachers had scolded him because he had not brought his book nor supplies to their classes. The reason was that he could not get his locker open which had a combination lock, and he could not talk to them to tell them why.
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What a simple thing this was for most normal students his age, but to him it was a crisis. Ordinary people, both adults and children, have no idea how difficult it is for an Asperger child to communicate.

Ben’s Writings

When Ben began seventh grade, we began to notice pieces of paper folded or in some cases wadded up just laying around the house. We began to read them to see if they were important enough to keep. We discovered that Ben was writing about all of his frustrations at school and at home. We collected some and found that he is a gifted writer at expressing his feelings. I will include some of them as this blog proceeds.
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Looking back Ben’s mother and I believe Ben’s years in the public school system were most unhappy for him. We believe in public education especially since I am a retired teacher and she teaches second grade now in the public school system. If we had it to do over, we would make every effort to find a type of education that would have better fit his needs. He definitely needed to be in a very small class situation where he could get a great deal of one on one instruction. I am not suggesting that the public schools cannot meet the needs of your particular child. In Ben’s case, not a lot was known at that time how best to teach Asperger children. Hopefully, methods have improved. Here are two of Ben’s writings that we found and they were written when he was about fourteen years old:

“You say you want to help, yet the problem still persists.
You try to help me understand, but shortly after, you desist.
You want me to do better, yet you only hold me back.
You are always trying to raise my hopes,
But from all this, confidence I lack.
None of your ideas or plans are ever followed through.
I’m just some kind of circus freak to entertain you.
To those who do not understand, (the vast majority),
You’d stay at home and weep all day
If you knew how it felt to be me.”

ALGEBRA

“Class begins as the tardy bell rings.
I rush to get inside-I barely make it.
I quickly grab my calculator and my math book.
“Great! Homework on a weekend,” I say.
Only to be interrupted by a flash of the overhead.
A Warm-up.
I understand none of the formulas or the equations
Or the problems, or the stress
That comes with having to learn and understand
All these random equations and symbols.
The warm-up is over.
Everyone else understands the explanations
Of how she got this number or that number.
I haven’t even lifted my pencil.
I struggle to understand Algebra once and for all.
I try to comprehend the formulas and numbers and signs.
But it only hurts my feeling of self worth.
And there’s the bell.”

Pride or Treatment?

Is your mind closed to the possibility that your child may have a handicap? For many years there has been a stigma regarding seeing a psychiatrist. Most of us would never hesitate to take one of our children to the doctor for any physical illness. For some reason many of us refuse to admit we need help from a doctor whose expertise is in emotional and mental issues. If your child exhibits the behaviors we have observed in Ben, surely now is the time to forget your pride and do what is best for the child. There is help available.
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Even after diagnosis and treatment begins, one can never stop being vigilant. Ben has had many outbursts or “meltdowns” as some call these episodes. These outbursts are usually because he felt someone mistreated him or that he was bullied in some way. In some cases there were dangerous fits of rage. It could take as long as one hour to get him to calm down. That is when we would teach that this world is not always fair, but violence is never allowed.
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During Ben’s middle and high school years were his most difficult so far. He spent a great deal of time pitying himself because he had Asperger’s Syndrome. He also spent much time blaming teachers because he felt they did not understand him or his disability. In some cases he was right. However, our objective was to teach him that in spite of these difficulties, he could still rise above them and succeed.
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Some of his severe negativity was related to his depression. However, we were aware that he definitely enjoyed blaming his bad grades on the teacher or on Asperger’s Syndrome. Knowing how far to press him was always difficult for us. Finding the right amount of pushing or backing off where his classwork was concerned was always a challenge. We knew that Ben had at least average or above IQ. He loves history and reads history books for fun. Yet he could not do the work required to make a good grade. This fact reinforced in my mind that his brain has trouble processing oral language. He was better at following written instructions than oral directions.
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One very noticeable behavior that I have not mentioned is that it is very difficult for Ben to make eye contact with the person with whom he is speaking. Counseling has helped this problem but we never stop reminding him the importance of giving eye contact.
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Also I have not mentioned before now about his lack of organizational skills. All of his life his room has been a mess. He never returns anything to its rightful place. If we told him to go clean up his room, he might go but would be so overwhelmed that he would have no idea where to begin. Usually, I go with him and tell him everything to do, one thing at a time, and he will finally get it done. His desks at school were always the same-messy. He might have completed a written assignment at home, but would not remember to give it to the teacher.

Diagnosis of Asperger Syndrome

Ben did very well in the early grades learning to read and spell. His writing, however, was atrocious. He became a wonderful reader and seemed to comprehend everything he read. Also, he became an excellent speller and absorbed correct grammar and punctuation along the way. His math skills seemed to be the weakest link in his learning process. In the early grades, he did fine in math, but in middle school and high school, math was definitely a problem for him.
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Ben began to realize he was different from the other children. In kindergarten the children were playing “Duck, Duck, Goose.” It is a game that requires the one who is “it” to choose another child to be the next “it.” When he did not get chosen, he would cry and cry. We later learned this to be the beginning of a life filled with depression.
 
Some teachers learned that Ben would obey written commands better than oral instructions. During these elementary years was when we discovered there was a disconnect between what he heard and what his brain processed. Some without realizing the disability thought he was lazy or just did not want to obey. Ben has always appeared so very normal; however his disability was and is as real as one who cannot get around without a wheelchair.
 
When Ben was nine years old a psychologist from the Mayo Clinic in Minneapolis, Minnesota, came to South Dakota, where Ben and his family lived on the Air Force Base. It was then that he was diagnosed with Asperger’s Syndrome. The psychologist explained that the Asperger’s Syndrome was like an umbrella and under it was also Attention Deficit Disorder, Obsessive Compulsive Disorder, and Depression (At least in Ben’s case).
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Ben’s dad was transferred to Randolph Air Force Base, TX. That is when we began the process of learning all we could about the disorder. Soon after their settling in San Antonio, Ben’s mom heard about a conference that was going to be held in the Dallas area. Dr. Tony Attwood, the leading expert in the field at the time, was to be the main speaker. She attended the conference and came away with a wealth of helpful information. As an aside, when Ben heard that she was going to the conference, he said, “Good, Mom. Maybe you can learn how I can make friends.” Ben had no friends and it was sad when his birthday came around because there was no one to invite to his birthday party. He realized this and was actually grieved because of it.

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