I don't have Autism. This leaves me at a disadvantage. I understand enough to know that there is a lot I DON'T know. For me, Autism's impact on the sensory system is the great unknown.
Last week was one of those great weeks. Alex was calm, happy and moving through his day. School went well and his jobs went even better. 'Look how much progress we have made!' I'm tempted to say. But I know it has very little to do with me and everything to do with his sensory system.
I'm starting to look at Sensory Processing Disorder like the clutch of a car. If the clutch is working the car can accelerate, slow down and stop easily. Clutch not working? You get slipping between gears, noise, jerking, overheating and engine stress. Things don't go smoothly. Alex's clutch is having a harder time working this week. For Alex, a struggling sensory system means a lot of ear covering, pulling his hood over his eyes, flashes of frustration and self speaking (repetitive dialogue from movies). It's hard to watch him have to work twice as hard to do half as much. It looks painful.
I was listening to a podcast last week. I had to stop at the grocery store and I didn't want to stop listening so I left one earbud in while shopping. I was at the New Seasons on Division during the lunch rush and it was packed. In the first 5 minutes I almost ran into two people. I realized with my ears engaged in the podcast, all my other senses were out of sync. I had to work harder to just move through the store, I kept forgetting items I knew I needed. I was a mess. When the check out clerk asked if I wanted the hot foods in a different bag I responded "I'm good thanks." I literally needed an extra beat to understand what everyone was doing. I felt awkward, nervous and pretty stressed out. Is this what it feels like when the sensory system isn't working together? Is it an extra layer between you and the world? And on the other hand, can this sometimes be a strength? I also listen to podcasts when I'm doing boring tasks. It saturates my brain and keeps me on task.
So this week Alex's sensory system looks like it's having a hard time engaging. And here is where I always have more questions than answers. Do I lower the bar? If yes then how much? Do I focus on how certain behaviors (jumping, loud talking, fast movements) impact others? Does this feel like judgment added on top of an already fragile system? Do I simply let it exist understanding that it will pass? Or does letting it fully exist risk letting it become a pattern? Is Alex as frustrated with this slipping clutch as I am? He doesn't look happy.
I'm almost always running on gut instinct in these moments. Should we go to our job today or not? Ok, lets give it a shot, if it looks like it's falling apart we can always leave early. Grab the earplugs, offer your sunglasses or a hat, bring something for him to chew on, cross your fingers and lock the car door three times for good luck. If he has a meltdown then leave, unless it's really an opportunity to learn how to work through a meltdown!
The only thing I know for sure? Alex is going to have to learn to live his life with this clutch he has been born with. I can't get him a new one. I can walk with him and help him learn about it, what it's quirks are, how to take care of it, what to do when it breaks. But in the end he has to learn how to live with it. I think he can.