Dear Congregation and Friends:

I understand we will be worshiping together. Sometimes worship can be very hard for me. Here is some information that might help our time together be more successful and enjoyable.

You may not be aware, but I am challenged by a hidden disability called autism or what some people refer to as a pervasive developmental disorder (PDD). Autism/PDD is a neurodevelopment disorder, which makes it hard for me to understand the environment around me. I have barriers in my brain that you can’t see. They make it difficult for me to adapt to my surroundings. Sometimes I may seem rude and abrupt, but it is only because I have to try so hard to understand people and at the same time, make myself understood. 

People with autism have different abilities: some may not speak, some write poetry, others are whizzes in math, some verbally script movies, others have difficulty making friends. We are all different and need various degrees of support. 

For me, being with lots of other people is like standing next to a moving freight train and trying to decide how and when to jump on. I feel frightened and confused a lot of the time just as you would if you landed on an alien plant and didn’t understand how inhabitants communicated. This is why I need to have things the same as much as possible. Once I learn how things happen, I can get by. When you try to talk to me, I often can’t understand what you say because there is a lot of distraction around. I have to concentrate to hear and understand one thing at a time. You might think I’m ignoring you—I’m not. Rather, I’m hearing and seeing everything and not knowing what is most important to respond to. I see many snap shot photos in my mind and I want to place them all together. Worship is exceptionally hard because there are so many different people, the organ, and the expectation that I be quiet. All of this is out of my ordinary realm.

Sometimes I have to get away from the commotion to calm down. I know I can spend time in our respite room. I find comfort there. If I cannot sit like everyone else in worship, please do not think I am misbehaved or that my caregivers have no control over me. Sitting in one place for even 5 minutes is often impossible for me. I feel so antsy and overwhelmed by all the smells, like others’ perfume, sounds, and looking at all the different people. 

People with autism have little things they do to help them feel more comfortable. The grownups call it "stimming.” I might rock, hum, flick my fingers, flap my arms, spin, talk to myself, or any number of things. I am not trying to be disruptive or weird. Again, I am doing what I have to do for my brain to adapt to your world. Sometimes I cannot stop myself from talking, singing, or mimicking. The grownups call this "perseverating" which is like stimming. Stimming and perseverating make me comfortable. Please be respectful if I stim to calm myself. 

My parents and caregivers are good people and need your support. The church is a busy, frantic, festive, loving place. Remember that this may be fun for you, but it's very hard work for me to conform to a typical worship. If I fall apart or act out in a way you consider socially inappropriate, please remember that I don't possess the neurological system that is required.

I am a unique person--an interesting person. I will find my place in this church that is comfortable for us all as long as you'll try to view the world through my perspective and eyes!

Your friend,

Brin Sieja, Chris Schoenwetter’s cousin

Rachel Karch, Paul’s & Anne's daughter

Emily Flogel, Sara’s & Hal’s daughter

(Adapted by Christina Schoenwetter from Viki Satkiewicz Gayhardt's "Holiday Letter" 11/19/99)