What people don’t understand is that people with autism and Asperger’s act differently. In some cases they may seem to be disruptive, hyper and even ill behaved.
What they don’t realize is that that behavior is often a form of acting out due to stress. Today this stress came from the boy’s routine being disrupted. Actually, his routine was disrupted the week before, but this week we had found a solution. So, we were trying something new. We were establishing a new routine.
And he was stressing.
I knew he was stressing because I was feeling the same way. My routine had been disrupted too. I had put my bag on the chair where I always sit in church. A couple of weeks ago they had moved the chairs around for a special service – they did not move them back.
That was an adjustment.
Today, though, someone actually sat in my space! It is always the same. I sit on the first row and there are two chairs to my left. My husband sits on my right when he is finished playing the music. Today, though, someone was sitting in one of the chairs to the left and someone else was sitting in the seat where my husband would sit. It was wrong, all wrong!
Please understand, I don’t dislike these people. In fact, I like them very much. But they have their own places where they usually sit and they sat in the wrong places. In the process of sitting in the wrong places, they sat in my area. It was very difficult for me.
I walked in and saw them sitting there. I stopped. The man at the door asked me if I was OK. All I could say was, “Someone is sitting in my seat.” I felt out of breath and I was really dizzy. I felt like I really wanted to go home.
The man, of course, did not understand. He smiled and said, “Oh, honey, it’s OK.” But it wasn’ t OK. I went out into the hall. I did not know what to do. I felt strange, disoriented. I did not know where to sit or where to be. Everything was wrong!
My husband calls these times “the universe is not in order.”
My universe definitely was NOT in order today!
But then I saw the mom of the boy with autism. She was going to the area I had suggested for her to go with her son so that there would be less stimulation for him. She knew something was wrong so she asked. I told her and she understood. She asked me if I wanted to go with her. I did. So we sat in this wonderfully quiet, low distraction area where we could still see the pastor, still hear the sermon and still feel God as He moved through the congregation.
But for the boy it was a new thing, a change and he was agitated. I am older and better at keeping the agitation on the inside. As a child, he is not. I just know that he was acting the exact way I felt on the inside.
The person up there with us did not understand and he treated the boy as if he were a behavior problem.
But he doesn’t understand. He doesn’t understand that our facial expressions probably don’t match how we feel. He doesn’t understand just how stressful sitting in a new area is for us. He doesn’t understand that the way that boy was acting was just the way I was feeling. I wanted to rock, I wanted my clay (but it was down on the chair by the people who were sitting in my area). I dug at the skin on my thumb (something I do when very stressed – why I carry the clay) until I bled. The not understanding man did not help because I thought he seemed angry.
My husband came up to sit with us when he finished playing the music. He is a good man. He is there for me. I know I am not always easy, but he is good to me.
It felt good to go home and rest. I know that next Sunday will be better for all of us because the boy and I will be establishing a routine. I wish we could educate the people at church so they could better understand us and our behavior. And understand would help them accept us better.<
Right now I think that several of the people just think I am weird.
I hope no one tries to stop us or not allow us to sit in that special area. We really need it, this boy and I.