Living with ASD
I don't talk a lot about my son's disorder, because it is hard for people to understand. Because people don't believe me. Because people will insist it is nothing more than a discipline problem. Most of all, though, it is because it is just hard.
But as hard as it is for me, it's much harder for him.
Before we even knew that he had difficulties socially, we recognized the sensory problems. It is difficult for him to distinguish discomfort from pain. He has made enormous strides in the last year, especially, but it's going to be a lifelong battle.
We went out today. Since we live in Vermont, and it is February, we have to wear a lot of clothes. Before we moved to Vermont, it was impossible to get him to wear shirts with long sleeves. He does, however, respond to environmental stimuli, even if it's not to the extent that we wish he would.
One thing he will not do is roll his sleeves up when he washes his hands. You have to be standing right behind him and force him to do it, or he won't. Wet sleeves are a normal consequence of that. Usually by the time we are going to outside the sleeves are dry, or his shirt has been changed, but not today. Today we were out, and when it was time to put the parka on, the sleeves were still wet. When he put the jacket on over them, it was uncomfortable, but it was OK. He has gotten a lot better with "dealing with it." But when we got the mittens on, it made the wet sleeves bunch up inside the parka.
I didn't even know what was wrong. And he couldn't tell me. He was too busy having a panic attack, crying out and begging me to help him. "Daddy, please. Daddy, please. Help."
There were more than a dozen people nearby, gawking at us. They whispered to each other. My daughter, who is two, and is testing the limits of what she can get away with, starts grabbing brochures off of the pamphlet rack and hurling them to the floor. No one helped. Someone laughed. I had to leave my son, wailing, in the middle of the floor, crying out for me to help him, so I could grab her and pick the pamphlets up.
I finally got them sorted and out. I didn't look anyone in the eye. What do you do? What can you do, when you've become a sideshow attraction?