Comments on: Episodes, and other clinical terms.

By: Ettina

Ettina — Mon, 17 Nov 2008 20:14:51 +0000

I think I might have an understanding of both sides here, as an autistic person who volunteers with disabled kids. I know you don’t like functioning labels, but the kids I work with include some autistics who are much more different from the norm than I am (though in the same fundamental ways) and for the sake of simplicity I refer to the difference between me and them by calling myself high functioning and them low functioning.
Anyway, from personal experience, I have meltdowns. Saying that makes it sound like something separate, but what it really means is that sometimes I get extremely scared and overloaded (overload without fear is quite different). Anyway, to me, it’s obviously a reaction to my environment and quite obviously preceded by X, Y and Z. During these times, I am different from how I am normally, but it feels more like being myself – like I’m just not keeping myself under control as much because I’m so upset. And sometimes other people call things meltdowns that I wouldn’t call that – for example, when I’m just barely keeping myself from a full blown meltdown, or when I get straightforwardly angry without a whole bunch of fear mixed in (which only happens if I’m not close to the person and they have little or no power over me). Or even when I’m just overloaded and shutting down, but not upset at all. And those things really are quite different, and all of them are clearly in reaction to things.
As a ‘helper’, I often don’t see those kind of conections, though. And I get a sense of who the kid is that can’t really be integrated with their behavior during meltdowns, or not very easily. In the program I also tend to be encouraged to view it as an ‘episode’ or something. I know from my own perspective that viewing it as somehow separate from everything else doesn’t help, but I don’t understand how everything fits together with someone else, especially when they can’t tell me what’s going on.

By: n.

n. — Sun, 20 Aug 2006 22:20:29 +0000

i have a question about this whole thing of the actions/reactions that are obviously for a reason to the person doing them, and obviously the people who try to care for that person are not getting why this happens, and so they call it “for no reason”.

What i want to know is, about a solution to all this obvious upset for the person reacting in distress (i mean you or Danny, more than the family or staff, but them too: if they care they should be distressed that they can’t help well)… Would the solution be to find a communication strategy for every non-speaking person? And is that possible?

Of course the other part of the solution would be for the staff or family to actually want to help once they knew what was wrong. But some do, so it would be a start…

this is follow-up to a previous question on a more recent post of yours. i hope you have a chance to answer at some point, becos i really want to understand this.

By: MOM-NOS

MOM-NOS — Fri, 24 Mar 2006 16:47:00 +0000

I appreciate the comment you left on my last post about your reaction to the word “dysregulation.” I’m sorry if you’ve been offended by anything I’ve written.

The word “dysregulation” works for me because it doesn’t specifically refer to “autistic” behavior. I use it to refer to myself as much as I use it to refer to Bud. To me, it doesn’t have the negative connotation that I’ve heard when people (specifically parents of autistic children, not autistic people themselves) use the word “stim.” I can certainly see, though, that it sounds really clinical and that can definitely be a turn-off. And clearly, it has a negative connotation to you. Again, my apologies if I’ve unintentionally offended.

By: Zilari

Zilari — Fri, 24 Mar 2006 03:25:00 +0000

Wow, that’s a really disturbing page. I have to wonder if anyone even thought to consider that perhaps following Danny around with a camera might make him feel worse. As soon as I read the line at the top of the page that stated that this so-called “episode” happened upon returning from an outing, I immediately thought, “Well, he was probably just overloaded from the outing.” I’m sure the camera didn’t help, at any rate.

By: Mom to Mr. Handsome

Mom to Mr. Handsome — Thu, 23 Mar 2006 23:10:00 +0000

If Danny is acting like he is in pain, shouldn’t someone take him to a hospital? He complained of being itchy, lossing control of his bladder and crying in pain and then was labeled as having “abnormal movements”. What kind of movements are acceptable when you are in pain? The documentation of it sickened me. Eighteen pictures??!!I kept thinking, “The next picture will either show them trying to soothe him or leaving to get some medical intervention.” Neither was shown.

Kristin

By: ballastexistenz

ballastexistenz — Thu, 23 Mar 2006 02:29:00 +0000

bronwyn_g: Yeah. That’s how I always thought of it.

Somehow when I started hearing the term being used on me, though, I didn’t understand quite what it meant, but I got the sense of it that it was some sort of weird clinical term that really screwed with my head.

julia: That tends to be how I deal with these things, as a general part of life. But I’m still sometimes actually afraid of these fairly ordinary occurrences for a number of reasons, some of which have to do with the way the medical profession taught everyone around me to handle them.

By: Julia

Julia — Thu, 23 Mar 2006 02:23:00 +0000

I’m not sure I’ve heard anyone use the term “episode” to describe any meltdowns, etc. with my son.

Whatever it is, it’s not an “episode” – it’s a reaction to the situation. The appropriate thing for ME to do, as his mother, is to figure out what in his environment is causing the most trouble and try to do something about that, or at least avoid that particular situation in the future. (E.g., avoid taking him to certain stores, give him time for transitions, be aware of his sleep and let others working with him know when he didn’t get enough the night before, etc.)

By: Bronwyn G

Bronwyn G — Thu, 23 Mar 2006 02:03:00 +0000

To me, an episode is something on TV or radio, and nothing which can be connected to real life.