The problem is if you don’t know what it means, and are guessing at why she says that. She could be asking to go home. She could be telling people to go away. It could be discomfort or anger, or any number of other things. If she’s trying to communicate something like this, discounting it because you don’t understand is bad for everyone. So assume as little as possible, and don’t offer information that you’re not sure of.

As for your other questions, I don’t know the rules, so probably what everyone else said.

If the person who asked her name was a random “outside” person, and you gave her name without her permission while working in the capacity of a HIPAA-governed organization, then technically, yeah, someone who is very nit-picky about HIPAA could call you on that. But in that situation, I think you may have committed more of a moral breach than a legal breach, since you cannot assume that your client wants you to volunteer information about her — or that she’s okay with you dismissing what she said as something meaningless or random. Unless, of course, she’s told you “Next time I say ‘go home’ to somebody, feel free to speak on my behalf and answer questions about me”.

And the worst thing is — the new guy doesn’t act like it’s a huge personal favor at all, but I’m starting to take it almost like a favor, or a luxury, when he actually does his job. Not because he’s particularly bad at his job, but because so many before them have acted like they don’t have to do their jobs. I shouldn’t be stunned into awe and gratitude by someone who does their job, I really shouldn’t.

1. That I had a long history of firing staff and that this was known. (Prior to moving here, I had had the exact same staff person, with almost no complaints, for several years.)

2. That staff did not like working around me because I was disrespectful to them, so therefore I did not have any right to be remotely picky about staff.

I asked repeatedly, orally through an interpreter and in writing, for details on what I had said or done that was disrespectful (so that I could either correct a misunderstanding or be more respectful), and the case manager refused to tell me, which makes me suspect he really meant that I didn’t have a lot of respect for him — which I didn’t, but which didn’t tend to carry over to staff. (Finding out what really happened to some of the staff who’d quit working for me — including one who’d moved out of state, after only ever saying complimentary things about me — also made me seriously suspicious later on about how much of this was just scare tactics.)

3. That the reason I didn’t want the exactly two staff (out of a lot, including people who weren’t very good at their jobs) I didn’t want, was entirely due to personality conflicts. (Both of them were incompetent in areas I needed competence in, to the point of dangerousness. One, also, was constantly evangelizing to me and expecting me to follow the advice of his religious leaders.) He did not back off on this despite repeated corrections, until he realized that I had witnesses to some of this.

He told me that if I didn’t want the staff he sent, then he could log me as refusing services altogether, and recommend me for residential care. (Which, while not resembling standard institutions in that residential care means having a roommate, is still pretty institutional in many cases, just the “institution of one” sort of institutional.)

Then almost immediately thereafter he and his boss wrote a letter to me that demanded certain things of me. Including, for instance, wanting me to release documents that didn’t exist, from an agency that wouldn’t have had these documents even if they did exist, to get information that they could have obtained just by asking me. Or, another release for asking a professional who didn’t know certain information, about that information that said professional did not know, when the information was again stuff they could have learned by asking me.

I was told that this information was vital to a legally-mandated process (I asked repeatedly for details about this process before we could have meetings to “start the process”, and was told that I didn’t need to understand it), and that I was holding this process up (by wanting to know what it was before I submitted to it, because of past experiences with people doing such things without me but my presence at meetings was considered permission enough to do so), and again threatening me with residential care if I didn’t comply immediately.

He also quit talking to me altogether and only agreed to communicate me in ways that I had no way of getting to (email, during a time when I was first on the streets and then in a location where I had no email access).

(This all, interestingly enough, was from a couple of people — the guy and his boss — who demanded upon initially meeting me that I trust them without reservation. Which seems like a ludicrous demand to me, and immediately made me aware that they were probably in fact not trustworthy. My current case manager is aware that trust has to be earned, and has never demanded my trust or tried to view me as having “trust issues” just because I don’t immediately have faith in a random representative of a government agency.)

In response to that, I filed a formal complaint, and also, once I got net access again, got people from all over the place to write to the agency to let them know that people all over the world were aware of what was going on and did not want me institutionalized. (This is an advantage I’m very aware of having over autistic people — like some I’ve known offline — with no net access or very little other access to the international autistic community or other advocacy circles.) Many of them were predictably told that there are no institutions in this state (untrue, there are still distributed institutional power structures, and group homes and nursing homes and so forth, just no state institutions), but that of course I couldn’t be discussed personally because of confidentiality.

But I suspect nonetheless that this all did have an effect on how seriously I was taken. Unfortunately, it was clear in the meeting that the person did not take other clients at the agency very seriously, and in fact considered them “unintelligent”. But, I got a new case manager out of all that, which was what I wanted. And I got a really good one, at that.

Nonetheless, I’m still terrified of asking this case manager to not send someone back. Unless there’s a very serious problem (more serious than things like breaches of confidentiality), I’m unlikely to suggest it, and likely to try nearly everything else before finally saying I can’t deal with the person anymore. Which ends up meaning I don’t really get to pick who my staff are, they get sent to my house in whatever order somebody else chooses and I have to reject one to get the others, there’s no trial period or anything.

And I’m aware that they’re very short-staffed at the moment.

But, yeah, there are many areas in which I forget I have rights. The right to actually pick who comes into my house on the basis of anything less than survival-level concerns still seems like a luxury to me, the way getting to eat every day seemed a few years ago.

You didn’t ask it? You *are back in not-having-rights mode, aren’t you? (Shuddery gibbery horrors.) I hope recovery is pretty fast, and that you’ve got safe people around you *now*.

See if you can get familiar staff, at least until you feel not-so-fried.

That’s a really good point. Only instead of having to set that up *when* you’re fried, the ideal would be, next time you have something coming up which is likely to have that effect, to book familiar-and-trustworthy staff in advance, and make sure they’re notified that one’s going to need double back-up so far as judgement goes. Knowing for oneself that everything isn’t fine, and that going out isn’t a good idea is too fragile.

I do suspect, though, that if a total stranger walked into your home and started snooping around your bathroom, you’d probably scream bloody murder or call the cops.

Maybe one reason this experience may seem unfamiliar to NTs is that it’s a lot less likely to happen at all — for some reason, people seem to take basic social rules like “don’t pry into another person’s very personal life without explicit permission” and throw them out the window when they’re dealing with someone they perceive to fall outside norms. [Grr]

And then there’s the famous “If only I’d said [witty comeback that puts invasive person in their place].” Which goes to show that *everyone* shuts down at some level in certain situations.

Those are my rambling thoughts on the matter, anyway. I’m sorry these women had so little sense (and more importantly, respect). Good luck regaining your general equilibrium and energy after the conference.