7:01pm September 2, 2012

➸ Trying to find the right words: The pros and cons of self-diagnosis

Self-diagnosis is a hot topic, particularly on Tumblr. And like most topics, there’s reasonable arguments both for and against it. This is by no means an argument either way, but meant to be a summary of both sides.

Note that this discussion is about self-diagnosis of MENTAL…

Functioning level was not originally intended as a measure of danger to self and others. It’s a concept broadly used throughout all kinds of medical diagnoses, including physical, developmental, and psychiatric. It means something different in different contexts, and often means something different one diagnosis to the next, or can even mean several different things within the same diagnosis. And I’m talking official clinical definitions.

I don’t know whether to laugh or cry that this is being used as an example where laypeople don’t understand professional terminology. As in, supposedly people just don’t understand what it means, because it ~really~ originally meant how dangerous you are to yourself or others, not how able you are to take care of yourself.

Thing is, I’ve actually done a great deal of research into what functioning level means across a fair variety of conditions, over time throughout the decades, and co-presented with the former president of the Association for Psychological Science on functioning levels in autism in particular. And that’s not what it “originally meant” at all.

Functioning level is largely something that is and has always been measured by eyeballing and guesswork, and the capabilities supposedly described by it vary from clinician to clinician and condition to condition. Only later did anyone try to create specific ways of measuring or assigning numbers to it.

In psychiatry, the way they eventually tried to turn their vague concepts into a number scale was the Global Assessment of Functioning. While the level of danger to self or others is part of the scale, it also measures ability to perform a job or go to school, have a social life, take care of yourself, reality test, cognition, judgement, hallucinations, delusions, communication, etc. So it attempts (and I think ultimately fails) to be a GLOBAL assessment of functioning level – one counting as many areas as possible that are affected by psychiatric conditions. Not just danger to self and others. Many times in psychiatry, GAF score and functioning level are treated as meaning the exact same thing. While being a danger to yourself or others begins to be a part of the scale only in the 1-20 range (it goes up to 100) you can also score in that range entirely by very severe communication problems or smearing feces and other serious hygiene issues (and I mean well beyond just not showering, to be clear – that is an area where terminology is truly confusing, they basically mean things like fecal incontinence, smearing, etc.). There is no level, not even the very lowest, where being a danger to anyone is required.

In developmental disability, including autism, two common ways of dealing with functioning level are IQ and/or various measures of adaptive behavior including self-care. Sometimes they use the GAF too but not as often.

But those are only the most measurable ways of dealing with functioning level in the DD and psych world. They are far from the only way. The other ways are generally specific to a diagnosis, or a smallish category of diagnoses. And they involve the eyeballing that went on before anyone came up with ways of measuring them. Different people eyeball different traits in different ways, so they are far more varied. Mind you that even the GAF, Vineland, etc. can be eyeballed even though they’re not supposed to be. (“You look like you’re functioning at work just fine”, “he looks like he can’t communicate”, etc. I’ve seen it happen right in front of my eyes so nobody can tell me the official measures are always used as intended.)

Eyeballing in schizophrenia might involve describing someone as low functioning because (when staff are around) all he does is sits and mutters to himself and doesn’t respond visibly when spoken to. The when staff are around part is important and yet nobody but disabled people ourselves ever seem to notice the discrepancy. Some of us “turn on” and pass when staff are around. Others “turn off”. Neither are necessarily showing our actual abilities in general. But our reactions around staff will nearly always be taken as showing our abilities in all other areas at all other times. That’s one of the big problems with the eyeballing method. Yet the eyeballing method is one of the most common out there.

In the DD world there were high grades and low grades and that eventually became high and low functioning. That tended to come from outside judgements of cognitive skills, communication skills, and self care skills. One or more of those, if low enough by eyeballing anyway, got you called a low grade or low functioning.

There’s also been attempts to describe low functioning deaf, low functioning diabetes, low functioning all kinds of things. You won’t always find it on the net, because that terminology is going out of favor for many things, but it’s out there. And for the most part it’s condition specific. If the bigger part of the condition doesn’t involve hurting people, that will not be how they measure it, and even if the condition does sometimes result in hurting people that will pretty much never be required in order to call someone low functioning.

Note: I hate functioning levels. I don’t find them useful. I think they greatly distort how human functioning actually works. Among many other problems. But I’ve done enough research to completely WTF at the idea that self-care isn’t a part of the idea of low functioning in conditions that affect self care, or that low functioning “really” just means likely to hurt yourself or others.

In reality it’s a very complicated concept. Very complicated. No possible way to sum up the official ideas about it in a sentence or even in a tumblr post. And that is because all ideas that originate in eyeballing and pretend to be objective and real are complicated.

Oh and even when they use a pseudo-objective thing like IQ for autism, they don’t always agree on the cutoffs. I’ve heard everything from about 60 to 90. So by those standards I could be high or low functioning just by which cutoff someone picked.

Signed, someone who’s been officially described as low functioning and did a lot of research in order to figure out if the idea was as fuzzy as it looked, and found out it was even fuzzier

P.S. Sorry for this being all over the place. I don’t feel well so I’m not concentrating the best.

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