1:20am January 2, 2015

When I moved into my first apartment, I was kind of a mess…

So I didn’t really want anyone knowing quite how much of a mess I was. I wasn’t sure what would be worse: Being placed in long-term care of some kind, which was a real possibility at that point. My last experience of long-term care was a place where they drugged me way past the toxic dose of a drug and blamed the resulting seizures on anxiety or attention-seeking… until my parents insisted on taking me to a competent neurologist. But anyway. I was not keen on the idea of anyone noticing quite how bad my life had become.

Which is why it pissed me off when my neighbors called the landlord to tell him how “disturbing” it was to listen to me smash my head against a wall for hours on end. Then my landlord told my parents, then my parents told me.

The problem could’ve been solved much more easily if my neighbors had simply come to me and talked about the matter. But I’ve found people don’t do that. They assume that I can’t understand things, and that my “keepers”, whoever they are, are more equipped to deal with the problem than I am.

Sometimes this goes beyond unethical and into illegal. At one point I was over 18 years old, at a doctor where I had signed no releases except the one you have to sign so the doctor’s office can talk to insurance. Certainly I had signed no release for them to talk to my parents, nor my therapist.

I had come in to describe some disturbing symptoms I was having, involving freezing up more often, and searing pain going up and down my back. I was having a lot of trouble putting things into words that day (it was a time towards the tail end of having any usable speech, and I hadn’t brought my AlphaSmart, if I even had one yet at that point.

So they were responding to the words I was saying, rather than the meaning in my head. Which was frustrating me. So I threw my glasses on the floor. Then picked them up again. And left.

By the time I got down to the parking lot, my parents and my therapist had both already been informed that I’d “thrown a tantrum because I wasn’t getting my way” and that I really needed my therapist to teach me not to do that. It of course was a meltdown, not a tantrum, and had nothing to do with “not getting my way” (I’m not even sure what “my way” would’ve been in that context). But 1998-1999… people really didn’t understand autism back then. Like if you think it’s bad now, and it is bad now, it was worse then, and even worse in the eighties, and even worse before that.

But anyway, if you have a problem with something I’m doing, don’t even think of “going over my head” and talking to my parents or case manager. Talk to me. Treat me like a frigging adult. Especially if you have no legal permission to talk to whoever it is, about the matter in question.

Notes: