I spend alot of time trying to explain Asperger's Syndrome to people. I have become quite educated about AS since we knew that Addison had it before the doctors would even test him for it.
When someone asks me about it, I usually try to first explain that AS takes away the ability for the person that has it to understand the affect their actions has on other people. In Addison's world, what he does is only of consequence to Addison. People with Asperger's are usually described as aloof, cold, or even at times rude. To you, it may seem extremely rude or undisciplined for my child to tell you that he doesn't want to talk to you right now and wants you to leave him alone. To Addison, this is just a fact and isn't malicious or meant to be hurtful. There is no way to teach a person with AS how to be more socially graceful. My focus shifted a long time ago from trying to change the way he is to trying to change the way people accept him.
People mean well. They think they have the answers. People generally believe that they can fix Addison for me. I stopped letting it bother me a long time ago, but it still doesn't go un-noticed. Have I considered not immunizing him any further? Why yes, I have. Did I hear that a special diet can CURE autism? As a matter of fact I not only heard it, I tried it and it resulted in a mad and hungry little boy that still couldn't look people in the eye. Are you the first person to suggest that he just needs a good spanking? Um, no...you aren't. Have I prayed enough? Read enough books? Taken him to enough doctors? Tried this medication or that medication? Yes, yes, and yes again. If I could have these folks understand one thing it would be this...I stopped trying to change Addison a long time ago. He is accepted 100% just the way he is in my house. If you aren't one of the people that can accept him 100% just the way he is, then maybe you should stay home.
His obsessions rule his life and leave him unable to think about anything else. Some of his obsessions are long lasting (World of Warcraft, for example) and some will last a few hours and then never be mentioned again (the need to use a pencil with a certain color eraser at school which happened recently and resulted in a trip to the principal's office). Lately he has become quite infatuated with listening to ring tones on people's cells. What may seem silly or necessary to me or you might be the most important thing in the world to someone with AS. The thing I try to remind Addison's brothers, friends, everyone else is that if there's not a good reason why you shouldn't just let Addison do what he feels like he needs to do, then why not let him do it? This is not just indulgence of a kid that likes to get his way. An obsession is a deep rooted NEED for someone with AS. That being said, there are times where it is necessary not to partake in an obsession. World of Warcraft almost led to my commitment to Whitfield. Before WOW was banned from our household I would sometimes wake up at 3:00 a.m. to find Addison fully awake at the computer staring blindly at the screen, playing the game. He talked about nothing else for months. I had to take it away from him because it was interfering with the rest of all of our lives and causing him total anxiety and agitation. But listening to ringtones? Come on, let's choose our battles!
The things I wish that people would recognize are simple:
-There's nothing wrong with my child. If he makes you uncomfortable then we understand if you prefer to keep your visits short and sweet.
-You don't need to figure out adjectives that describe Addison when you are trying to point out that he isn't like your son. I don't need you to call him quirky, different, or special and I don't need to you refer to other kids as the normal ones, the regular ones, or whatever else you feel you need to do to distinguish them from each other. They are all just kids. It is fine, however if you want to call him smart, funny, sweet, handsome, or anything else that addresses how wonderful he is. Thanks.
-Staring at my son when he is mimicking something he saw on TV or a computer game is just like staring at anyone else with a disability. You wouldn't stare at a little boy in a wheelchair trying to figure out what is "wrong" with him, would you?
-Most importantly...however hard this is on me or Addison's brothers or other family members or teachers or anyone else the most important thing everyone needs to know is that it is HARDEST on Addison. He asks me often, "Can't you make this Asperger's go away?" We know nothing about dealing with Asperger's. Nothing at all.
Someone once told me that kids with Asperger's live in their own world and it was our job as their parent to not try to bring them to this world but to find our own way into their world. I may have gotten the wording of that wrong, but I like the thought.
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