Autism Awareness… Aspergers Awareness…
I’ve written and spoken on this before. What good does hanging an awareness banner up if no one really knows what it is in the first place.
People need to be educated. The problem with that is they don’t think it’s important or relative to them, so why should they take the time to learn?
What most folks don’t understand is that it is likely they are guilty of bullying folks who are in the Autistic spectrum unaware. They are unaware because they do not recognize someone who is Autistic or has Aspergers and they just see the person as lazy, dump, slow, obstinate, rude, and so on rather than as someone who had a different mental capacity.
When you have been around people in the spectrum you can mentally see a box around their head keeping their thoughts limited to what fits the inside their box. However, if one is not accustomed to a spectrum person they simply misunderstand them.
If one is to “get through” to a spectrum person it is not going to be by anger or frustrated. Those actions cause the spectrum person to close off. Sometimes they can be reasoned with by soft detailed and orderly instructions that are practical based unless they have already formed their own orderly practical ideas.
Educating the public is important because Spectrum people are all around us in work place our children’s schools, everywhere. Think of that odd ball person you used to whisper about, or that kid you remember being bullied all the time. It’s likely they were in the spectrum. The “odd” adults are often the one who never received social training but were ignored and ill treated.
Autism vs. Aspergers…
Autism has had some exposure and when talking about either Autism or Aspergers people tend to think of the exposure Autism has had. One example would be the movie Rain Man. Some folks think of children sitting cross legged and rocking back and forth and others of children holding their ears rocking or people who have amazing math skills and can tell you how many matches are left in the match box and so on, things that are more visual and obvious. Aspergers is high functioning Autism and cannot always be detected with such obvious observations.
People with Aspergers usually seem “normal” to an untrained eye. They use humor correctly; they are mathematically inclined but might not let you know right away, like the autistic they are of a very sensitive sweet nature…until…, they can hold down a decent conversation as long as it is on a subject of interest, and they have days that their spectrum just doesn’t show.
What adults fail to see in children is that their humor isn’t normal for their age. It is what some would call “dry” or “British” humor. So the adult sees them as normal while other children hear their advanced humor and think they are odd and either avoid them or bully them. They can be taught to look one in the eye which will through many off. Their sensitivities to sound and texture and such vary from person to person. Their sweet nature will cause a problem when it disappears from frustration. The observing person will often write them off as mean and rude because they suddenly went off on them. When in actuality something didn’t fit into their “box” mentality and they didn’t know what to do with it causing irritation and agitation. They often display sudden agitation also from people showing aggression toward them. It is a sudden onset and may not be because of the immediate “threat” but rather from an accumulation of attacks.
Because of their stubborn way of thinking they are usually tagged at a young age as dumb and do not make friends that they can keep. This sometimes causes them to go into depression even at a very young age.
Besides bulling…
A sad misconception for many children in the spectrum is that they are demon possessed.
My experiences…
I have two girls and two boys in that order. My oldest girl and my oldest boy have Aspergers. Due to moving around a lot it has been difficult to get a medical document stating that they officially have Aspergers. While in Hawaii I had them tested. We moved before the diagnosis was complete. The doctor took me aside and said though he couldn’t officially tell me my children had Aspergers he wanted me to know that it was more than likely they were in the spectrum. Getting a medical document is good but sadly it means little in the public school system. They have their own test and observations that need to be done in order to get help.
I was able to work with the public school councilor last school year and get social training for my daughter. It was an elementary school. It made a world of difference. She went from being terribly bullied everyday and not being able to hold on to friendships to being accepted. Though she needs more training she now has a confidence that I believe will last.
My son on the other hand hasn’t been so lucky. My son is still in elementary school. Last year I tried to get help for him as well. His education is suffering greatly due to his Aspergers. KRESA , the people who run the special education, observed my son for an hour and decided he was perfectly normal. They saw him get in time out in gym class and have to stand facing the wall. While he was facing the wall he would look over at the other student who was doing the same thing and make faces at him. This caused both children to laugh and continue on. For a child deeper in the Autistic spectrum that would be unusual, but for a child in the spectrum that was actually quite normal. If the KRESA person had done the research on Aspergers they would have known that kids with Aspergers are very social. Some lose their social ambition by adulthood due to repeated rejection.
My son was rejected from being in special education class the next year which is the year we are in now. There were other departments who could do testing but by the time that started it was too late in the year. I was promised it would start again this year. During the summer the school system had a lady meet my son twice a week to help him with his reading skills. My son was going into second grade, would have been third but was help back in kindergarten. He couldn’t read at all. By the time summer was over my son was reading small word and doing well. He is currently in second grade and not doing well. I’ve had reports from the teacher and school councilor that he seems depressed.
My son is the quiet type and doesn’t confide in me or anyone very often. The other night he opened up and told me about the bullies at school. Sadly, he is the target. He didn’t tell his teacher cause he felt he could protect himself by blocking the hits with his arms. Naturally I was in the councilor’s office discussing this matter the next day.
I have dealt with my son and depression before. He had a friend who had a very confident nature and a great imagination. I do not blame the other child for my son’s actions. My son believed the boy when he said he had control of all elements and that he could do anything and so forth and so on. My son would get so sad and tell me about all of the boy’s abilities and how he only had control over the fire element. This would actually depress him. Then to make things worse, the boy’s mother would tell my son things about her religion. She is a Christian and at first I didn’t mind because there are wonderful lessons in the Christian belief and I like for my children to be well educated. The problem may have been how she told her stories but I know the main problem was how my son assimilated the information. He would get very depressed. I would try to gently find out why so I could help him. On one occasion he told me he was so very sad because Jesus was in his feet as he motioned toward his feet and that the rest of him was evil as he motioned over his body. His countenance was heart breaking. That was one example of what happened many times. I would assure him that it wasn’t true. I would tell him we all have good and evil in us and what we make strong is what we become, and so on. He would then come out of his depression and be back to the good natured boy I was accustomed to.
The behavior that scared me and continues to scare me is the aggression. I started to see it in my daughter but ever since she received social help and sense she found her passion in manga and aname she has been fine in that area. She has her passion to go to when she is overloaded. She also finds comfort and courage in remembering famous people who were in the spectrum and went through what she is going through. But my son hasn’t found his passion yet and the school system and the medical system have put him off continuously. I had to find a new med center for my kid’s receintly. Their old one was not only far away but didn’t handle spectrum testing. I requested my kids be tested and I requested a psychologist for them. After some time went by I finally received an appointment for March 2011, it is currently Oct. 2010.
I have a five year old son who likely has ADHD. He is continually on the move and often very rude regardless of the consequences. It has always been an issue but one I could deal with till receintly. I am in the process of moving and when I get established I will be having him tested and educating myself in this area as well. My son with Aspergers is eight years old. He is a lean boy with hidden strength. He appears to be weaker than he is not just because of his leanness but also his mellow character. Combine an eight year old boy with Aspegers who is bullied everyday at school with a five year old ADHD boy who shares the same bed room and you have a recipe for disaster. I started seeing my son with Aspergers react aggressively toward his younger brother a while ago. I did tell KRESA and his school as well as the doctor. I have had talks with my son about coming to me when his brother gets to him rather than lashing out at him. His lashing out is in the violent nature. About two days ago his little brother grabbed his arm in an attempt to get him to play with him and hurt him. He slung his brothers body onto the couch and jumped on him and began hitting him repeatedly. It breaks my heart just writing this, it was a nightmare to see it. Of course I grabbed him off my younger son right away.
I was very angry at my son at first. But I know better and as I calmed down I understood he was in a rage and was out of control. Though I still had to deal with his behavior my anger switched from him to KRESA. How could they have been so foolish and unlearned to have just observed him for one hour and made the judgment that he was normal? How could that person who did the observing call herself educated? Who gave her the certificate to qualify her for that job in the first place? What about the person who gave my son the appointment for next year? What part of my telling them my son had issues with aggression didn’t they get? When did aggression become something not to be immediately concerned about? Why isn’t he as important as my daughter?
I was talking to some acquaintances about Aspergers and my children. One of the ladies is a new acquaintance from Russia. The Russian woman told me she knew almost right away that my son and daughter were in the spectrum. I was shocked, not even professionals could pick that up from my experiences. She reminded me that in Russia she is a psychologist. I was still shocked. She then explained that she had worked with many children in the spectrum and when you are around them you recognize them easily. This I know to be true. She also told us that in Russia they are required to study about all areas in depth. I have to add the fun part about this conversation was that the woman who told me several months back that I made it all up was involved with the conversation and heard what was said. She too is from Russia and holds the other lady in great esteem for her respected occupation. That was not something I could have planned!
Though I try to be understanding of my children in the spectrum there are times it is just too much for me. I am a single mom and I have no close friends where I live to turn to at any hour about anything. So I have made the decision to move closer to my very good and trusted friends in another state. I need someone I can turn to when it is just too much for me. I do not want to be a mother who ignores the problems or one who ends up abusing. It is too easy to go those directions when handling all this alone.
I want to be clear that I do not solely blame Kalamazoo, MI for their lack of true Autism awareness. It was in Camden Ar. that the church we were in called United Fellowship House of Praise deemed my daughter demon possessed. Yes, I’m sorry to say, went through that too. If it was obvious to the church that there was something wrong why didn’t the public school pick anything up? Why did her teacher send complaining notes home every day and not have a clue there was a reason for her odd behavior? It was in Honolulu that my daughter was sent on to the next grade though all her grades were failing and then held back the next year. It was there she frustrated the teachers and was badly bullied by the kids and still no one had a clue. It was Honolulu that my son went to special ed. preschool for delayed speech and then sent to regular kindergarten where he upset the teacher daily and again when he repeated kindergarten with the same results. How many flags do children in the spectrum need to hold up before someone recognizes their need for help? I’m sorry to say but a million flags would still not be enough in most places.
I figured out my daughter and son had Aspergers through a psychologist and a councilor. I was in the process of getting divorced along with dealing with other heavy issues. The doctor prescribed me a psychologist. She mostly attempted to help me figure out what I would do and where I would go and how to afford it. However, when I told her about my husband she told me he sounded like he had Aspergers. She had receintly been reading about Aspergers and how Bill Gates has it and has been receiving social training and such. Later while I was talking to my daughter’s councilor I told her a few things about my husband, not mentioning what the psychologist had said. She too told me he sounded like he had Aspergers. This peaked my interest and I began researching Aspergers. Not only did my husband fit the description but my daughter and son fit it as well. It took a while for it all to sink in. Once it did I was able to relate it to my daughter. Some people think I shouldn’t tell my kids what they have, that it will hurt them or become a crutch. In my daughter case it made her feel better. Before she felt something was wrong with her, now she sees it as a gift. Though we do not have medical confirmation that lady Gaga is in the spectrum there are many of us involved with the spectrum that see the signs. Lady Gaga’s story matches the stories of the kids in the spectrum. Gaga has been one of my daughter’s biggest inspirations. My daughter doesn’t want to be a pop star, but she does want to accomplish great notable things, mainly in the area of aname. She remembers how Gaga was made fun of everyday at school and she thinks of where she is now.
My ex went through the bullying as a child and found his own way to deal with it. He decided at a very young age that he just didn’t need friends. Today he is almost forty and still sticks by that discussion. It helped keep back the mental pain and he feels it still does. He believes his children in the spectrum are just like him so they are just fine like he is.
My point to all this is that you would see and understand the necessity of educating yourself as well as the masses about the Autism Spectrum. There is so much information on the World Wide Web that there is no excuse to be ignorant. Sharing my story wasn’t exactly easy, but I care about kids and I want the national abuse to stop.
Wow… quite a long post.
I am going to reply about your Aspie son. Even though I was only diagnosed 2 months ago, I can imagine how my parents will feel if I were diagnosed right around your son’s age instead of age 25. Except for the bullying, I am also a very quiet person. If I see someone, I most likely either wait for someone to talk to me or my attempts at initiating conversations usually have minimal success. (I have better success if people engage me in conversations.) Meanwhile, I share similar problems with your son because even my CI’s I have in OT school can’t tell that I have AS (either they think it might be unprofessional by suggesting to a fieldwork student that the student might have some form of autism, or thinking that my “Aspie traits” will go away after several months). It actually took some diligence on my part to piece together a thought that I might have AS.
Of course, being an OT student that I am right now, I actually came across an article recently, as I have to read it for my “philosophy like” class right now. What I got from the article is that you are definitely not alone in this situation.
What I am wondering is… is your son receiving OT services right now? If so, is it school-based only, or also clinic-based? While my experience might be biased, I still think that a good OT could help in improving your son’s well-being at the school that he is at.
Thank you for your comment. Sorry it took me so long to reply. I have been very busy with moving from Michigan to Missouri.
I have been trying to get my son OT services and it has been an uphill battle. However, we are in a new place now so I hope things will be different. So far things are going terrible at school which is a good thing. When everything is calm and good people tend to think I am making it all up. The school staff has no problem believing that my son needs help which is half the battle won already. I have a doctor appointment next month and if all goes well she will give me a referral for him to be tested and receive the help he needs. Once the medical diagnoses is in place the school let me know they will jump on board and do their part. I’m still keeping my fingers crossed.
You are right about not being alone. And to add to your positive outlook, there are so many famous people who are/were successful because of their Aspergers. It caused them to focus so well they had break throughs that others didn’t think was possible. And then to get cross cultural training adds to the big world of opportunity’s.
These things can take time. So, all you can do is to be patient. I am lucky that I got the referral and diagnosis within a month and a half. Then again, my case is an urgent case because if they are not that fast, my fieldwork coordinator and I would be in no man’s land. Basically, we have acknowledged a problem, but we would not have known why the problem exists. Simply put, my future in OT would have been in flux. After all, getting tested was the determining factor in whether I get accommodations or not.
Right now, I feel more and more at ease after knowing my disability. The only exception is my student professional leadership role. On the surface, people say that I am doing a good job considering it is my first try. However, I realize that the fact that my diagnosis have affected me more than I thought. I feel that if I don’t build rapport with people, relationships could suffer as a result. I mean… it’s every right of theirs to look at me as a leader. But, I also think that now I have this disability, they should put that in consideration that, “Wait! He is doing what he can to help himself. The way he does things might be unconventional. But, if that’s the way he works best, we can’t really criticize him unless he’s not doing what we want him to do.”
Update on our situation.
My daughter has been diagnosed with Aspergers and my son has been diagnosed with Autism.
I get a kick out of that special ed person from KRESA in Kalamazoo saying my son was normal and didn’t need special ed. And out of Tatyana, my friend who turned on me, who basically let me know it was all in my head.
For my son although we have the diagnosis now I still have to wait for the special ed people here to do their own testing. Naturally when I think about it I am nervous but hopeful.
Until recently I was given the impression they would just accept the doctors diagnosis but that was miss info. When I mentioned that to the special ed lady she said that if they just accepted a doctors diagnosis they would have tons of kids in Special Ed. I didn’t like her answer at all but help my tongue…for now.