A diagnosis can feel like a blow, but it is also is a starting point. A threshold.
The doctor on Zoom with gray stubble wearing a yarmulke listened deeply- truly one of his superpowers. I spoke about how it now takes hours for my son to get dressed, it didn’t used to be like this. I sit on his bed and give him verbal prompts- first to get out of bed, he can usually make it to the bathroom and then the ordeal happens there. I move to sit outside his room to give him privacy, but the new fresh hell was hearing water splashing and sneaking back in to see him rinsing his hands in the toilet and wiping them along the lifted rim. Almost in reverence, like a ritual. That’s when I lost it. “Oh no, don’t do that you have to wash your hands,” my voice rising. Then the anger- “get out mom, get out of my bathroom, no, no, no.” If it wasn’t the hands in the toilet, it was so long in the bathroom, 30- 40 minute mark. “OK come out of the bathroom, you can do it, walk your feet out of the bathroom”- on a good day- “I’m coming mom” but still in there for a good while longer. Then finally out of the bathroom, taking the five steps toward the gray corduroy bean bag and his clothes splayed out, waiting for him. “let’s get your underwear on, there you go.” It may take 15 or 20 minutes, “I am doing it mom, I am getting ready,” while not getting ready, staring, standing, stretching arms overhead. At some point, often after a hard edge seeps into my voice, “come on now, you are going to be late, do you want to miss seeing your friends and Miss Rebecca?” Then, all the clothing must be dropped to the floor just so, underwear eventually goes on, at times I put the shirt on overhead, some days it’s “no I want to do it my myself.” I’ve taken to putting the deodorant on while he is still in bed because returning to the bathroom could be another 30 minutes. Lift your arm- swipe, swipe.
How it can regularly take several hours to move from the car in the garage into the house.
It kind of crept up on us. My husband noticed “he is taking a long time to eat.” While he’d always been a slow eater, he now would sit at the table and just stare and take up to two hours to finish a meal. He was losing weight.
The doctor leaned into the screen. “It sounds like autism catatonia.” This is not something I want to hear. But it almost feels like a relief. These many months of waiting, of impatience, of voices raising, tears. It’s not just OCD. It’s something else and there is a name for it.
“We are seeing this, mostly in young men- it’s not well-understood- it’s marked by not being able to move through a threshold- these young men facing fear and worries of how will they live when their parents die, the anxiety of missing milestones, not being able to drive, have relationships, they feel stuck in their bodies.”
I understood completely. For my son’s college course he was asked to download a photo of himself into an aging app. Since he needs significant support using a computer, I did the photo download. When the photo of his smiling 21-year old face and soft brown eyes, wearing a baseball hat- was revealed to be a wrinkled, jowly old man I immediately burst into tears. We didn’t finish the assignment.
Other moms tell me they worry all the time about who will take care of their adult children when they are gone. I usually don’t allow myself to go there.
# (Update- this was written in April, since then with new medicine, my son’s body is moving better but he still has rough days and we continue to struggle with what will help him)