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7:03am December 31, 2012

Communication problems

I was telling my friend about the black widow spiders in my bathtub. The ones that made me so reluctant to go in there when this same friend had me set up a speaker phone in the bathroom and prompted me through the vague motions of a bath or shower.

She said “You never told me about that back then.”

I said “You do realize that I was discovering true, consistent communication for the first time back then?” Or more specifically, the first time such skills stuck.

And she said “Yeah it seems like these days you’re always telling me far more detail about things that happened, stuff you never told me before.”

I can’t describe what it was like. I knew I was able to say some things. But other things were impossible to say. And I’m not talking about sophisticated analysis of my emotional situation. I mean “there were black widows in the bathtub”.

I know I used to scare her with phone calls like “So… my kitchen is on fire, what do I do?” But I think she gets scared in retrospect about dangers I wasn’t telling her about. Not to be secretive but because I couldn’t.

And my life at the time needed describing for many reasons. One was that nobody I knew online understood why I was so hell-bent on obtaining services. Only the one who walked me through things over the phone every day had a good idea why, and even she didn’t know how bad things were. But when agencies sent questionnaires about my “typical day”, I couldn’t fill out concrete obvious details. Only my mentor seemed to even understand the communication issues. She wrote something like, “Amanda’s communication skills are deceptive. She will talk about an apparently irrelevant subject at great length while failing to mention she hasn’t eaten in days.” And that was the problem. I couldn’t say what I wanted to communicate, I could only say other stuff.

And I was so frustrated online. If you think autistic people’s parents can be bad now. Back then they couldn’t even conceive of someone like me. I’ve spent all those years trying to carve out a space for us. And now they’ve at least heard of people who can write online but not take care of themselves. Before, they didn’t even exactly reject the idea, it was simply unthinkable.

I badly wanted to tell them many of the details of my life. I could hold them in my head. But it took me at least five years to even scratch the surface with words. And to be told all that time that I was clearly wonderful at communication because I could discuss other topics online, was more than I could stand. There was always more I couldn’t say than I could.

And they tried to tell me stupid shit like “that just proves you’re smart and the stuff you can’t communicate is the stuff all smart people can’t communicate”. No. No. No. I’m talking about black widows in my bathtub, urine on my floor, getting stuck all the time, concrete things that practically everyone can say. I couldn’t. Not because of emotional reasons but because I had, and have, a striking communication deficit. It’s just that you have to know where to look. You have to not fill in the blanks and assume if I can say this then I can say that. And that it usually takes between five and fifteen years of brain-bending work to be able to say something new.