Thursday, April 2, 2009

World Autism Awareness Day

Check out this blog written by the blogger's 11 year old son with Asperger's Syndrome.

My son was a little different. We called him "moody" and "quirky". He had terrible temper tantrums as a toddler and pre-schooler. But then don't all strong-willed children? We took him a few times to a child pyschologist but this was before the ELCA offered mental health coverage for pastors and we just could not afford the $50 a week it was costing us. Wow that sounds like such a deal now!

We all managed and in his small town school my son was accepted as just quirky. Then he turned 11 and puberty hit. And we moved. And his father was suddenly killed in a car accident. And he was having melt downs and crying and throwing tantrums in school. And at first everyone was sympathetic because he'd lost his father.

Then people decided it was time he "got over it" and I "stopped putting up with his antics". I took him to psychiatrist after psychiatrist. He was diagnosed with depression, anxeity disorder, defiant child disorder. He was given all kinds of medications. He just got worse. Kids learned how to pick on him so that he would make a scene which was all very entertaining for them and then he would get in trouble.

Honestly I used to wish he was addicted to drugs because at least then I would know what to do. I was terrified he was going to kill himself, or worse, someone else.

Finally one day at a school meeting a special ed teacher said "You know, he seems like he might have Asperger's Syndrom" I had never heard of this syndrome. I bought a book on it that night and after having read two chapters I knew it was describing my boy. We took him to a testing center and sure enough that's what he had.

It still wasn't easy after that because other than the one teacher, the school didn't get it. They wanted to know how they could make him stop being the way he was.

I moved again and we began to have the same problems in the high school. They were ready to encourage him to drop out and get his GED. I learned that I had to stop depending on experts. The only person who was going to help my kid was me and I had to fight for him. I contacted a special ed right lawyer. It was the best $200 I ever spent. ALl I had to do was mention his name and suddenly every accomodation we needed could be done (This lawyer had recently won a court case forcing a school to pay tuition for an expensive boarding school since they were unable/unwilling to provide what the boy needed).

With the right accomodations everything changed. I found a good shrink who found the right medication to control his anxeity. He graduated from high school. Now he's sharing an on-campus apartment with 3 other boys at a community college. He still struggles with anxeity and doesn't drive. I don't know how self-sufficient he's going to be. I'm just pleased he's come as far as he has.

But let me tell you a story. Back when he was 11 we were on vacation on a tourist boat ride. I told him he could buy a pretzel. They were out of pretzels and he broke down and cried with large sobs. First of all he was just stressed out from being on vacation. But also it was always difficult for him if he was expecting something, to have things turn out different than he expected. Not getting that pretzel threw his whole world upside down. That's very difficult for us to comprehend. All the people on that boat saw was an 11 year old boy crying because he could not have a pretzel. My face still burns when I remember the harsh stares and not so soft murmers of "brat". I stared them down. They didn't know him or our situation.

I made myself a vow that I would NEVER EVER judge situations that I see in public when I don't know the story behind it. You can see a child make a public scene and tsk tsk about what a bad mother that is and congratulation yourself that you are so superior. Or you can offer a sympathetic smile or comment and say a prayer for that family.


  1. I have seen a diagnostic sheet for Asperger's and find I tick all the boxes! And I know several people who have been diagnosed with it, and without exception, they are some of the nicest people I know. I bet your son is someone I'd really like if I knew him.

    And I do sympathise - it's so hard to change mental gears when you're all set for a pretzel and they say you can't have one but have an ice-cream instead. Don't bloody WANT an ice-cream..... I have learnt to hide my reactions, to a large extent, as I'm sure your son will hve.

  2. My nephew has Asperger's. He is 12 and has done well so far...puberty looms, though. It sounds like your son has done really well. Thanks be for mamas who will fight for the right.