Friday, April 02, 2010

World Autism Awareness Day -- A Personal Story

Today, April 2, is World Autism Awareness Day. The U.S. Centers for Disease Control estimates that an average of 1 in 110 children in the U.S have an Autism Spectrum Disorder (ASD).
There seemed to be something "different" about my son. One of our first hints was when he told us at a very early age, "I feel like a ghost." Although he now states that he meant he felt that he was not getting enough attention paid to him at the time, I saw it as his verbalization of the disconnect within himself.
My wife seems to remember that there was a change -- that her "smiley boy" suddenly did not smile anymore. We were concerned that he had a hearing problem because of his inattention to anything we said. He had some speech issues which were due to the shape of his palate. He seemed to lack an ability to organize anything. He had quirks. He was resistant to any change. Behaviorly, he was a lot to handle. His meltdowns were legendary.
We had his hearing tested and found there there were no problems with his hearing. We took him to a pediatrition, who discussed the possibility of my son having ADHD or Pervasive Developmental Disorder. Yes, this was a scary and difficult time for the family.
A few years later, we took him to a psychologist, who proffered a diagnosis of Asperger's Disorder. Yes -- that seemed to be the most accurate description of my son -- who he was, how he behaved, how he appeared to experience the world.
I bristle when I hear people who think they know it all proclaim that some of these autism spectrum disorders do not exist -- that they are made-up catagories in which educators throw students who don't seem to fit the norm. Try having a child who has a spectrum disorder and then see what you think. There were many challenges for my son, his siblings, and of course, good old mom and dad. The effort that was sometimes required was enormous.
Well, those were the early years -- the ones of discovery. Once we knew what we were dealing with, we then had to actually deal with it. I won't go into any details here, but believe me when I say that raising my son was one of the most difficult things I have ever done in my life.
Skip forward to today. How has my son turned out? Well, he will turn 16 in just over two months. Although he still has a different "style" to the way he does things, he actually seems to largely be a typical teenager. He has socialized a lot more as the years have gone on, at first through his online friends, and more recently through regular friends at school. He is a member of the scholastic bowl team at school. In fact, several weeks ago he came home from a competition and said he needed to catch a quick dinner so that he could go out to a movie with some friends.
Whaa -- "friends" -- movie? I nearly bawled my eyes out on the spot. For so long he would say that he had online friends, yet he did not see any need to have friends at school. He used to have friends when he was younger, and it was a long time before he seemed to have any real life friends again.
He is extremely bright -- probably around genius level IQ. He is passionate about what he believes in -- but maybe someday he'll get a little more conservative in his views! He eats us out of house and home like any other 15 year old boy. His room is a total mess. He lives for the computer and internet games. Yeah -- he seems to be a typical teenager. I feel so fortunate considering how far he has come. We love him to death and have high hopes for his future.
Today is Good Friday -- two days until Easter Sunday. Don't tell me He doesn't exist.
Challenges exist in every family. We seemed to have weathered this major one. Best wishes to you and your family as you navigate through this ofttimes difficult yet rewarding life.

4 Comments:

Blogger bastinptc said...

Bless his and your heart.

12:17 PM  
Blogger Memphis MOJO said...

Touching post - thanks for sharing.

4:52 PM  
Blogger BWoP said...

Thank you for sharing this story.

1:48 PM  
Blogger genomeboy said...

I know how you feel. Glad things seem to be going well with your son. Would love to catch up about things.

Jason

7:13 PM  

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