Autism is definitely the most challenging thing I have ever dealt with. Not a day goes by without a myriad of challenges that greatly test my patience, character, and endurance. It’s easy to see how autism is a challenge for parents and caregivers. Lately my mind has been switching things around. How much more challenging must it be for an autistic person to function in a world where most people are “neurotypical” and the world revolves around expectations and rules made by us “normal” people. What can I equate this to? Imagine going to bed in America and waking up the next day in the jungle of the Amazon among its native people. Your mind is still completely intact and you have all these thoughts and feelings, but everything about this culture is foreign to you. You cannot communicate because their language is different. Even their gestures have different meanings. You do not understand their rules and expectations. You are fearful and anxious because you are not of these people. There is misunderstanding on both sides. Perhaps you try to keep to yourself for safety or because it is just too hard to become like them. More on this analogy later…
One difficulty we have been having for several months is having Philip sit up with us in the church sanctuary during the worship, or music, time. He is completely fine in Sunday school and Children’s Church, which are in smaller rooms downstairs. In fact he runs into his classroom with a big smile on his face each week. However, it all changes once we pick him up and transition him to the “big” church. He starts to whine and we often have to drag him upstairs like a sack of sand. Either that or he takes off running in any direction but the sanctuary. We’ve had to chase him down the hall, in the flower garden, the gym, you name it. He is so quick and stealthy (like a Ninja!) we cannot take our attention off him for even a second. My husband Sam and I have tried many things to get Philip into the sanctuary- bribing him with his favorite fruit and candy, going up a different stairwell, getting him in early before the room has had a chance to fill. We’ve had very limited success. He either cries or we end up keeping him in the lobby or another room until it’s time for Children’s Church.
Until recently, I have mostly looked at this situation from my perspective. I was frustrated and tired. I could not relax and talk with friends. We could not sit together and worship as a family. Why couldn’t my child sit like the other kids in church? We must be causing a disturbance.
Philip’s ability to communicate has helped me understand him like never before. His communication is still emerging and is difficult and labored, but I know it will only get better in time and with practice. I have tried in the past to have Philip explain why he didn’t want to go to church, but he was not able to tell me until tonight. We were discussing another challenge from the night before in which I reacted strongly to a mess Philip had made. This had escalated to a full blown tantrum with Philip crying, screaming, and pulling at my hair and clothes. It resolved itself eventually, but I wanted for both of us to understand it so we could avoid such an interaction in the future.
Me: Do you remember what happened last night?
Philip: You were mad.
Me: Yes, I was mad because of the mess you made, but I should have controlled my temper. How were you feeling about what happened?
Me: I am sorry too for how I reacted. How do you think I could do better next time?
Philip: You should not yell.
Me: How did it make you feel when I yelled?
(continuing conversation a little later)
Me: What are some things that make you upset?
Philip: I do not know
Me: What about church? Why don’t you like to go upstairs to the big church?
Philip: The room is too loud
Me: Would it be ok to keep trying to go? Maybe you will get used to it.
Philip: N (for no)
Philip: N (for no)
Me: Should we just sit in a different room?
Me: Would you try the big church in the distant future?
So let’s go back to my analogy above. It would obviously be scary to find yourself among an unknown Amazon tribe. But what if this tribe went out of its way to welcome you, take you in, and protect you? What if they accepted you and really worked hard to help you learn their language and ways? What if they met you half way if you couldn’t quite adapt? Maybe, just maybe, you would no longer fear them. Maybe you’d want to try harder to connect. Maybe you could live among them with purpose, peace, and great satisfaction. Maybe that tribe would be better because of you. Maybe….