I am not sure if people totally understand what they’re dealing with when they try to ask me questions. I’m part of a study right now. I am being asked which autism organizations I belong to. I have been trying for months to answer their damned question. They say they are asking things in open-ended ways so that they can get my idea of what’s important rather than theirs. Fair enough. But ask these questions and it’s like pouring gibberish into my brain and expecting sense to come out.
I don’t think people get it. I really don’t think people get it. I am sitting here trying to write this. I have been trying to write this for months. It’s a simple question and I want to answer it. I want to answer it. I want to give them the answer. The answer is in my head. And the more I push the closer I get to a full-bore out-of-control meltdown.
If I were going to die tomorrow unless I answered this question, I still couldn’t answer the question.
Hand me the belt that I used at the Autism National Committee conference and I will be able to tell you all about how I used it to get around, and in the process of telling you that, I will be able to tell you that I belong to the Autism National Committee.
Ask me randomly what autism organizations I belong to and it is random chance whether I will even be able to tell you I belong to the Autism National Committee. And that is only one of the ones I belong to. I only came up with that just now because the belt was near me.
You’re expecting words to trigger memory, and more than that, words to trigger a particular process for accessing a particular kind of memory on purpose, and that’s not a reasonable expectation of many autistic people. (I know autistic people who are baffled by the fact that this is a problem for me, but it’s no less real for their lack of this as a problem.)
And this is one of those assumptions that goes well into the zone of dangerous, because it can create any of the following scenarios in medical contexts:
“But you would have mentioned it if you were really in pain, starving, dehydrated, whatever. You can write essays, after all.” (The ability to write essays does not grant me the ability to conjure up words in response to situations on demand in specific ways accepted by some general social consensus I was never invited to.)
“The first time you mentioned pain is the first time pain became a problem.” (I had painful migraines — that seriously restricted my activities when they happened — for years before I knew how to associate what was going on with the notion of what a migraine was, and then put into words what had happened.)
“You never mentioned heartburn before you heard someone describing reflux, so you must have decided you had it when you heard them saying what reflux was.” (That’s not what the lab tests showed. I felt the sensation, often amplified by neuropathic pain into something truly agonizing, for years before I knew what to call it. And I remember having it since I was very young, my parents remember it since I was a baby. I needed the description to trigger any mention of it in regards to myself though, and that is often true of many things in my life.)
“You only mentioned part of the pain you were experiencing, so you’re not in any other pain.” (It’s the only part that words came up with right now, the rest is there, may even be worse, but I won’t necessarily mention it. This is how I got reflux treated before I got neuropathic pain — far more severe — treated, even when the neuropathic pain had me literally writhing around and moaning.)
So as usual, this isn’t just annoying, but dangerous.
Right now, the situation is just annoying though. I’m not sure people understand. I can’t do this to save my life — I have literally not done this to save my life, on several occasions. There are ways to get information out of me, but these questions will not extract the information, or if they do, it’s only over so long that by the time the information is out it’ll probably be past the deadline. Wanting to tell you makes no difference.
I know there are autistics out there who think that wanting to do things and not doing them is some kind of perverse unconscious self-hatred. How does a person explain this to someone who can just hear a question like this and remember everything they need to know? Any more than I could, before, explain sitting within feet of food and not being able to coordinate everything (by which I don’t just mean motor coordination) enough to eat it. This isn’t self-hatred, this isn’t some kind of backhanded attempt to injure myself, this is a wall I hit that can only be gotten around by not taking this road in the first place.