Episodes, and other clinical terms.

Standard

When I became more heavily involved with the medical system, an interesting shift of terminology occurred around the way my life worked. It was now divided into normal (something that was never even named), and “episodes”.

Episodes were varied. The word seemed to refer to:

  • Seizures.
  • Meltdowns.
  • Shutdown.
  • Periods when I moved very slowly or not at all.
  • Loss of speech.
  • Motor or vocal tics.
  • Behavior that other people could not explain.

For instance, if I got overloaded during an appointment, and curled up and hummed, that was not overload, that was “an episode”. If I took a walk and seemed oblivious to things, that was not an autistic person taking a walk, it was “an episode”. If I freaked out and started screaming, that too was not overload, it was “an episode”. If I tried to run away from captivity, that was not a normal response to such a situation, it was “an episode”.

I’m not sure how to convey exactly how sick I got of hearing “Amanda had an episode today.” Or “Amanda had a [fill-in-the-blank] episode today.” It seemed like almost overnight my life had become a series of notes people were taking on my behavior, and the bar was always far too high, resulting in frequent meltdowns and shutdown, resulting again in this episode crap on the part of everyone who was dealing with me.

What I needed was not for people to endlessly discuss these things, and not to treat them as if they were “bad” in some way and needing to be eradicated at all costs, but to actually grasp them as something integrated into my life. Episode denotes something separate from ordinary life, and these things are part of my ordinary life, they’re seamlessly integrated into it, yet everyone wants to denote them as something else. Something different. Something separate from me and my life.

To have people taking notes on these things, recording them, putting me under a microscope, talking to each other about them, only involving me insofar as I would go along with what they wanted… this was not useful.

These days, I run around blogs and I see people using terms like episode, dysregulation, and other very clinical-sounding terms to describe and understand themselves or their children. And then I see things like Danny’s Episode with Abnormal Movements, and I can relate too much to Danny, both in what he is doing (that sort of thing happens to me regularly) and the way others are describing him (which enrages me).

I cannot, just cannot, imagine my parents running after me with a camera on a day like that. I have a lot of days like that. On a day like that I want to be helped to lie down — which will take effort — and then covered with heavy blankets if possible. I can run around so much that I start getting asthma attacks, otherwise, and then I can’t control movement enough to use an inhaler, so it’s serious. I don’t want the kind of saccharine “caring” I sometimes get on those days, but I also don’t want to be chased around with cameras.

I just keep wondering, for Danny, and for other people who are still being described in these ways that separate off these portions from our everyday lives and medicalize them, how they feel about being described this way, how it shapes their conception of themselves, because it certainly screwed with mine enough when I was a kid. There’s got to be other ways to handle things like this than to treat them in this medical, detached-from-the-person way.

About Mel Baggs

Hufflepuff. Came from the redwoods. Crochet or otherwise create constantly and compulsively. Write poetry and paint when I can. Physically and cognitively disabled. Anything you hear in the media or gossip is likely to be oversimplified at best and wildly inaccurate at worst, the only way to get to know me is to actually know me. I'm not really part of any online faction or another, even ones that claim me as a member. The thing in the world most important to me is having love and compassion for other people, although I don't always measure up to my own standards there by a longshot. And individual specific actions and situations and contexts matter a lot more to me than broadly-spoken abstract words and ideas about a topic. My father died a couple years ago and that has changed my life a lot in ways that are still evolving, but I wear a lot of his clothes and hats every day since he died and have shown no sign of stopping soon.

8 responses »

  1. 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.)

  2. 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.

  3. 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

  4. 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.

  5. 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.

  6. 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.

  7. 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.

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