Issues with staff

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The last time I posted about staffing, no one responded, leaving me to believe that I might be the only one around here who has staff... but whether you have them or not, maybe you have some advice.

I have basically like the adult version of a TSS for 40 hours a week. It's two women who split they hours. So far, so good. I mean, yeah, one takes frequent smoke breaks and the other's a little... odd... but they do their jobs.

Then there's my BCBA, who I see 5 hours a week (don't ask me how they expect ABA to be successful in just 5 hours/week, but whatever). She's made a few downright stupid comments. For one, she frequently makes references to how "incredibly high-functioning" I am... when I'm just... not. There's no two ways about it. I don't drive, I don't leave the apartment without help, I don't cook without help (because I have been known to leave things laying across the burners and not turn them off) I don't work, I have a panic attack with every building I go into, I have numerous self-injurious behaviors, and my communication is poor (I am minimally verbal, for the most part. What I do say doesn't make a lot of sense to most people). I wasn't sure how to take her comments, until she said, "You could be just like everyone else too, you just don't want to be." Now, I get the idea that she thinks that I'm basically faking.

This BCBA has been with me for less than 10 hours total. She's making huge decisions for me, or trying to, such as that I should move, that I should drive, that I shouldn't get a service dog... things that are none of her business. Not to mention, she knows that I have a very high IQ and, like many people, makes the error in judgment that I am much higher functioning than I am. Basically, I think she's grossly overstepping her bounds.

So, being me, I emailed her and told her that. She didn't respond, but to say that she got the email. No apology, no okay, no I see your point; nothing.

And it's not as if I can just get a new BCBA, as she is the regional autism director. AKA, she's Big Stuff.

My mom's going to try to reiterate what I said to her at the ISP meeting (yearly review) next week. Any other suggestions?

I worked as a home health aid for years. I rarely met other aides, but the ones I met seemed a bit odd. Most likely, so do I. The executives seemed out of touch with reality, but then again, most executives seem that way to me. One of my clients, who actually taught me a great deal about "the way the world works," told me that I had been the only aide he ever had who never stole from him.

I can only suggest that you set boundaries early and firmly.

Well, when I was in high school the teachers who were supposed to help me did very similar things.

People think intelligence = high functioning, and to a degree it does, but really, unless you're autistic yourself you really can't comprehend what it's like, and you make gross simplifications and stupid comments like "you can be better if you want to be." While I think that we have a reasonable amount of control over our actions, I often feel like I'm watching a movie when my traits get the better of me and I act on them, it's REALLY hard to work on that sort of thing, and it sounds like the people who're helping you don't seem to understand this.

Maybe if you write a list of what you want to accomplish, how she can help you do aforementioned things, etc, she'd get a better idea of what's going on in your head. I suggest writing it though if you can't verbalise your thoughts well, as I can't.

But end game, if you're paying for them, they need to help you as you see fit, which means you should be allowed to have an opinion MATTER.

I do have a big list of goals and stuff that we're working on. I had input in coming up with those.

Also, just the thing is that I DON'T pay them, as it's all paid for by the state.

I live in care so I have some experience of working with staff. I think it's extremely ignorant to assume that just because you're IQ is high that you are just too 'lazy' to do things. I got an A in English but can barely take care of myself. IQ and self care are two different things.

I hate it when things like this happen.

Jellybean, if staff isn't here, I basically don't do anything. I sit on my computer or sleep at night (well, I TRY to sleep). I do get a bath because I love water and play in it any chance I get... in fact, sometimes I get 2 or 3 baths a day. I rarely eat when they're not here, am not allowed to cook, don't much know how to clean... I mostly sit, stim, and type. I would never move (too absorbed in whatever I'm doing) if it weren't for my watch alarms, and even then when it goes off (at noon, 5, and 8:30) I have to look to see if it's noon or 8:30 or what have you.

I found out recently that even though the Waiver says it goes on for the rest of my life... it doesn't. Their goal is to get you out of it ASAP. I've had my current level of hours (38/week) for TWO WEEKS, and they mentioned backing them down! Ridiculous!

Only to keep fighting for your right to be intimately involved with EVERY aspect of your treatment. It sucks that you have to, but fight you must. I would say something lame, like "we've got your back" but I'm just a faceless internet post. Hopefully there are enough good people around you to help you get these things taken care of.

What do they expect from you? To learn it all by osmosis? How would that even work?

Drill a hole in your head and install a permeable membrane?

Trephanation solves everything?

Aztecs and Mayans were on to something.

That basically describes me, when I lived on my own. I would lose track of hours and days. I wouldn't remember to sleep or eat, bathe, or take my medication. Let alone my cleaning, paying bills, or doing dishes, doing laundry or taking out garbage. I was also an alcoholic and a drug addict. I spent several years in and out of psychatric units and halfway houses.
Now I'm married with a child and pets, own a house and car and (finally) have a few hour a week job I can manage. My husband and son keep my going when they are around...but if I am alone or going through a rough time, then I immediately fall back into my habits and I'm only able to do the very basics. I have meltdowns and shutdowns, self injurious behavior, obsessive thoughts and actions...
I have always considered myself to be high functioning though. I suppose that my husband and my son are my "staff" and thankfully they are here for life.

Good luck with what you are going through, I hope that it works out.

I think socially I am rather HF (awkward and aloof, but... mostly alright, I think)... it's communiction that bites me in the rear end. I vary from echolalic to completely nonverbal. I can never just... talk. I can't create new thoughts with speech, even on a good day.

Anyway, I am a really good example of "why functioning labels don't work." I used to refuse to use them, but everyone else does... so I try, but I always feel like I'm misleading someone. I am quite HF in some ways and moderate in others. My doctors say "severe Asperger's" or "moderate autism." Even they can't agree on what I have.