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Saturday, April 02, 2005

April is Autism Awareness Month - Day 2

I've spent most of the day thinking about my next subject. I have a list of topics I would like to cover. I decided to talk a little about Asperger's Syndrome because of a comment I received.

Like most of you the first time I heard the words Asperger Syndrome I did not know what it was. Not wanting to appear stupid I didn't ask... something I have learned to not worry about. I went home and started searching the internet. I came across a good many sites that gave a clinical explanation and some diagnostic criteria. This worked for me but may not be the best way to enlighten all of you. I have since found a fairly good explanation...

Asperger's Syndrome is a term used when a child or adult has some features of autism but may not have the full blown clinical picture. There is some disagreement about where it fits in the PDD spectrum. A few people with Asperger's syndrome are very successful and until recently were not diagnosed with anything but were seen as brilliant, eccentric, absent minded, socially inept, and a little awkward physically.

Although the criteria states no significant delay in the development of language milestones, what you might see is a "different" way of using language. A child may have a wonderful vocabulary and even demonstrate hyperlexia but not truly understand the nuances of language and have difficulty with language pragmatics. Social pragmatics also tend to be weak, leading the person to appear to be walking to the beat of a "different drum". Motor dyspraxia can be reflected in a tendency to be clumsy.

In social interaction, many people with Asperger's syndrome demonstrate gaze avoidance and may actually turn away at the same moment as greeting another. The children I have known do desire interaction with others but have trouble knowing how to make it work. They are, however, able to learn social skills much like you or I would learn to play the piano.

There is a general impression that Asperger's syndrome carries with it superior intelligence and a tendency to become very interested in and preoccupied with a particular subject. Often this preoccupation leads to a specific career at which the adult is very successful. At younger ages, one might see the child being a bit more rigid and apprehensive about changes or about adhering to routines. This can lead to a consideration of OCD but it is not the same phenomenon.

Many of the weaknesses can be remediated with specific types of therapy aimed at teaching social and pragmatic skills. Anxiety leading to significant rigidity can be also treated medically. Although it is harder, adults with Asperger's can have relationships, families, happy and productive lives.

This definition comes from a website that contains a lot of valuable information. It was written by Lois Freisleben-Cook's and was originally a post to the Listserv Autism Newsgroup. There is no one definition that will completely explain Asperger Syndrome. You must take the time to research a lot of different sources including books, internet and professionals in order to become more knowledgeable.

For me, learning what Asperger Syndrome was turned out to be a major lightbulb moment. An "aha" that finally made sense to me. You see, my oldest son Kris had been diagnosed with ADHD but it never felt quite right. There was more going on but I could never quite put my finger on it.

My figuring out the answer did not help the process. I didn't know what to do and while I was working on figuring that out fate intervened. In the early part of 2003 during a period of time leading up to a standardized test at my son's school he finally cracked under the pressure. He couldn't handle the pressure and told me that he wanted to kill himself. He had felt for a while that he was different, that he had no friends and that he didn't want to go on.

Kris spent 6 days at an in-patient hospital. When I spoke with his doctor I mentioned Asperger's Syndrome and she said they would look into it. They did screen him for it and I didn't have much home of anyone listening to what I thought. The Psychologist that did a background history with me was less than enthusiastic because she was under the impression that Kris' original doctor did not believe it was AS. That is true, she felt he was Bi-Polor. After my phone call from the Psychologist she interviewed Kris. She called me back right away and pretty much apologized. She stated that she saw clear evidence of AS and recommended that I follow up with the school.

The next battle I faced was with the school. They were "too busy" and lacked the resources to retest him at the time. This didn't sit well with me. I paid out of pocket for Kris to go to a yet another psychologist and have the testing done in order to get a diagnosis.

I received the same attitude from this dr as all the others. No one wanted to believe that I could possibly be right. I mean after all, I did not go to college for x number of years... I was only a mother. The lesson I learned from this experience was perserverance with a load of patience. Kris went through the testing and several weeks later I returned for the results.

I have to admit, I went there with an attitude. I expected the worst and I was prepared. What I didn't envision was this dr telling me that I had been absolutely right. I was floored. It felt good to be right and to have some recognition of the fact that I actually know my own son but I was also devastated... because I was right. With both Kris and Joshua I kept hoping that someone would tell me I was wrong, that there was nothing going on, they were perfectly fine. No one ever said that and I had to learn to deal with what lie ahead.

I know this was a super long post. It can be a long and difficult road to a diagnosis and I hope that by sharing our personal and painful story I may help another.


At Sunday, April 03, 2005 5:18:00 AM, Blogger Tracy said...

I was a part time teaching assistant for the last 7 years and one of my charges was a 6 year old boy who was diagnosed with Aspergers. My job would be to take over when the teacher found he was losing interest in a subject she would be focusing on, and set about continuing the lesson in a different way. For example, if she was doing Geography and started referring to books and getting the children to read together, I would sit with this little boy and we would use props like coffee beans when we did about South America, my trusty plastic llama and a ball of alpaca, that type of thing. It didn't mean he learnt any less than the other children, I just had to find different ways of teaching him. Sometimes, we would draw the attention of the other children as our efforts sometimes proved more interesting than the original lesson. This little boy has now passed through the next four years at his middle school and his parents have removed him to continue the teaching at home. He was in no way backwards, you just had to find the right key to unlock the door. Doctors over here say that Aspergers is quite rare, but working in a primary school, we had more and more cases diagnosed in various degrees. It is something I had never heard of up to that point and definitely needs to be aired.

At Tuesday, April 05, 2005 7:15:00 PM, Anonymous Michelle said...

I appreciate you taking the time to educate and to share your story with us. Keep it up. I find it fascinating and I think it's important for all to see, as more and more children are diagnosed, they will someday be active members of their community and a little bit of understanding goes a long way.

I know that your sons do not have severe autism but I was curious as to whether or not you have read The Curious Event of the Dog in the Nighttime.


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