Despite my childhood trauma with “First Communions,” today I drove an hour (which in itself is an exciting story for another time) to Gales Ferry, CT. In Gales Ferry is a church where Patrick received his First Communion. Patrick is a twelve year old boy I babysat for a little over a year. He loves trucks, sand, firecracker popsicles, mash ‘ems, and has autism.
Going up to receive First Communion in front of an entire congregation and your family, after trying to memorize what you are supposed to say and do at what time, is a bit intimidating for any 12 year old. For someone with autism, it can be downright terrifying. So was the case as I walked over to the pew where Patrick sat with his mom, Dawn, putting his head down and firmly stating that he was not going up there.
In front of us sat Patrick’s uncle and his family, and his grandmother and godmother who are the ones who actually attend this church. Patrick continued asking questions such as “Who is taking me up” and “Am I getting a present,” while still declaring he was not getting up. The godmother looked him straight in the eyes and said, “Listen Patrick. I have worked too hard and long with you on this for you to mess it up. You are going up there.” Proceeding, she ran through when to say “Amen” and when to walk up and sit down.
I was offended. She worked hard? Not only does autism cause Patrick to struggle with sensory deprivation issues, tactile problems, and auditory issues, but Patrick is also at the age of puberty. That means for one with autism, the anxiety and anger are far beyond what one without the disability must deal with. Temple Grandin of Colorado State University described anxiety for someone with autism by saying, “Just imagine how you felt when you did something really anxiety provoking, such as your first public speaking engagement. Now just imagine if you felt that way most of the time for no reason.”
We may be sitting there, worried about how we will look if this child does not do what they are supposed to… but they are experiencing something internally that we cannot even understand. Grandin continues, “The ‘nerves’ were almost like hypersensitivity rather than anxiety. It was like my brain was running at 200 miles an hour, instead of 60 miles an hour.”
When the time came, they dragged Patrick out of the pew as he shouted, “No! I am not going up!”
As they were pulling him to the front, he kicked and yelled the F—word, causing hearts, mine included, to stop. I looked around to see the expressions on stranger’s faces. Moments later he was directly in front of the priest and took the bread, shouting, “Amen! Do I get a present now?”
His mom walked with her head lowered back to the pew, tearing up, as the godmother held him as they took a photo of him with the priest and the grandmother walked back to the pews shaking her head. “Well, that was a piece of cake, wasn’t it!?” She said it with a sarcastic and judgmental tone.
Yes. It was.
It was a piece of cake compared to what that boy must deal with on a daily basis. We feel inconvenienced that he said a bad word and it is embarrassing. Maybe for a moment we should think about the situation he is in that makes him have to react that way! Unable to communicate effectively and suffering from speech deficiencies, Grandin described the thought process during outbursts like the one we saw from Patrick: “Often I would logically think to myself, ‘I am going to scream because I want to tell somebody I don’t want to do something.’”
This was not Patrick’s church. It was not something he wanted to do, and he was surrounded by people he had hardly ever seen before. On top of that, he had just been told that he better not mess this up. Sorry— but I think some of us might have even let that word slip if we had been in that same situation.
As he sat back down, Patrick looked at me as his eyes lit up and his smile widened, exclaiming, “Hi Amberleigh! Thank you for coming!”
A few minutes prior to the whole “First Communion,” he laid his head on his mother’s chest and said to her, “You are the best mom in the entire world.”
Later in the night, I would hear him say “thank you” to three other people for coming and ask two people, “Are you okay?” after they coughed or sneezed.
From what I saw, the way those of us without autism behaved tonight— feeling that our embarrassment and feelings of inconvenience were more important than someone’s comfort or sensitivity to a disability, judging other’s when we cannot even imagine being in their shoes— was what was actually disconcerting, actually disgraceful.
Patrick put on his tux, his suspenders and his tie, received his First Communion, and never once focused on what others were thinking of him— he decided instead to tell us “thank you for coming” or ask “are you okay” whenever he thought someone might not be. I think that is far more than what we can say about other children his age. Instead of being ashamed, we need to focus on these traits that are so rare these days yet so necessary. I could not be more proud to have everyone know that I was there for him, the boy who yelled and didn’t want to go up, yes, but the boy with more heart and love than most adults that I know.
Grandin, Temple. “An Inside View of Autism.” Indiana Resource Center for Autism. Indiana Resource Center for Autism, n.d. Web.