Setting up the scene---Janey is home from school in the afternoon. She has asked me to put on a show---let's say Kipper. As the show starts, she starts her routine. She takes the remote from me and places it in the middle of the right couch cushion. She observes it, and then re-places it several times to make sure it's right in the middle. She then surveys the room, and looks for laundry baskets. I have four of them, and I tend to leave them in the room after folding laundry. Janey goes to any she sees and moves them carefully to the place she sees as correct. Then, if there are any shoes in the room, they need to be lined up, left on the left and right on the right, next to each other. If it's a light arranging day, the next step is the last---she looks in the trash and makes sure nothing in there is out of place. Certain things don't belong there---magazines, wet pull-ups, most any form of crumpled paper. Those items get taken out and put next to the can. Then, and only then, does Janey settle down to watch her video.
Although it sounds hard to believe, I first noticed Janey arranging things literally as soon as she could purposely use her hands. She would make sure toys she could reach were symmetrically positioned. Her arranging habits well pre-date her autism diagnosis. Over the years, the habit has ebbed and flowed, sometimes almost disappearing for long periods, sometimes being out in force. Lately, it's at a huge peak. The arranging rituals can take a very long time. They are almost always done before she does something she enjoys or something relaxing---before a video or before going to sleep at night.
Unlike many of Janey's behaviors, I relate very much to the organizing and arranging. Not that I am much of an arranger. But I know how it is to feel I need to do something that to an outsider doesn't seem to make much sense. I'm completely sure Janey has OCD (Obsessive-Compulsive Disorder). I am sure because I also have it.
My OCD never took the form of arranging. It's funny (in a strange, not ha-ha way)---OCD has a lot of forms, and most people specialize in one of them. I was a checker. I checked things. On my worse days, I could check my pocketbook to make sure my credit cards and keys were in it thirty times in a row. I could re-open a bill envelope over and over to make sure I put the check in it. I could go down to the cellar enough to get a great workout to make sure I'd actually started the dryer.
OCD doesn't bother me much any more. Mine has been very well under control, with medication, for a long time now. Even before that, like with Janey, sometimes years and years would go by without the checking urges. It's a strange disorder. Like Janey also, I think I had OCD pretty much from birth. I can remember as far back as my memory goes needing to check things, feeling like if I didn't check them, sometimes horrible, something unacceptable, would happen. Unlike Janey, though, I usually knew that my checking made no sense. Most people with OCD have that knowledge. We know our obsessions and compulsions are generated by our minds, but that doesn't make them any easier to not do. I don't think Janey understands that. I don't think she has the kind of perspective that allows her to see that.
Sometimes, when the arranging gets out of hand, almost anyone would feel like saying, with some degree of impatience, "Just stop that! Stop moving the baskets! Stop taking things out of the trash! Stop uncrossing people's crossed legs (another big one)!" But I don't usually feel that way. I know how it feels. I know how, despite in my case knowing full well I didn't need to check my pocketbook again, I still couldn't help doing it, no matter how hard to tried to fight it.
When we next see Janey's psychiatrist, I'm going to do my level best to explain more effectively than I have in the past what is going on, and ask him about medication specifically for OCD. I have resisted, partially because I hate the thought of her being on another medication and also because, interestingly, I think the lack of perspective in her situation makes the OCD less distressing. It's a bit of a problem for us, but for her, I think it isn't, mostly. I think it just feels like something that needs to be done, or it did in the past, until this latest escalation. Now, occasionally, she is getting upset, because part of her arranging now involves my placement. I am supposed to be in the bedroom while she watches her shows. I can't always be there, partly because I need to check on her quite often and partly because I don't always want to just stay in there for long periods. So far, she has mostly accepted it when I've explained I have to be elsewhere---at least for a few minutes, until she tries again to push me to the bedroom.
In a strange, small way, it feels good to be able to relate to one of Janey's behaviors as I do with this one. I'm not autistic, which is why I often get some very good insight from those adults I know who are autistic on Janey's behavior. With the OCD, I have the perspective. I've talked before about having OCD, but not quite in this detail, and it's a little hard to do, but also---very fair. I write about Janey, hoping I am representing her in a way she'd approve of if she could read what I wrote, and so I should also be willing to be open about myself.
Now, to have a few minutes to myself before the bus arrives home and we start this afternoon's session of arranging.....