Mild, moderate, severe autism

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On the other hand, someone could be like this on the outside yet still have an ability to express themselves through a certain medium to an above-average level. That's where it becomes complicated.

Hmm, I understand. That is very true. I guess it's like the GAF score that the psychiatrist gives at the time of assessment, being highly subjective. I think I need more time to think about your post and the other posts, to digest the information and to understand the implications.

Oh, and I used the terms "low-functioning" and "severe" interchangeably. I don't know if that's right or wrong, but I do not see the difference between the two.

Last edited by MathGirl on 19 Sep 2010, 10:07 pm, edited 1 time in total.

There are others who know a lot more about this than I do, but it seems the problem with 'sorting' autistic people is due to having weird sets of skills that are arranged in "counter-intutitive" ways.

Like with IQ, they used to think there were a lot of really low-IQ autistics, and then someone tried language-free IQ tests and the results were dramatically different. And I hear there are even deeper problems, like that IQ tests are designed with the assumtion that people's sub-test results will be fairly even. So it makes interpreting what an IQ score means (what it predicts) a problem/potential-mistake.

Some people have severe sensory stuff, which could lead to "looking funny" behavior-wise, but have good abstract thinking skills, but be non-speaking. Or the opposite. Those things aren't "supposed" to go together, but of course the real question is why is it commonly assumed that certain sets of skills/traits do go together.

And that's the trouble with things like "like a baby" -- someone might not be able to get food into them for, say, sensory reasons, but that doesn't mean that any other trait about them is neccessarily "like a baby." Assuming that that is an accurate description of their package of skills could lead to bad problems.

It's like we have ideas grouped together in our heads and they need to be unpacked and re-grouped, in order for us to have a better basis set with which to try to understand.

Thats what autism is about. Its about the inability to express yourself in a conventional way. The further from the "convention" you are, the more severe. Thats how I see it.

What is conventional? My mom always talks about how I should be "normal". What is normal? I've looked into this, nearly obsessively, last year, and came to the conclusion that there is no normal. What is universally accepted in one social group will be condemned in another. And individually, people act differently than they do in groups (see Asch's conformity experiment). In addition, as Callista had already mentioned, autistic people (as well as non-autistic people) can exhibit different characteristics at different times and to varying levels. So when you take every single thought, every single choice, and every single action the people in a certain social group have made, you will not be able to find a strictly defined conventional way of being. I see it as "patterns observable in the advertisements of a magazine", "patterns observed in a specific group setting", "patterns observed in people going to a certain event", etc., but I don't see how a universal is possible because every single culture differs from any other culture. What is thought of as a disability in our culture, can be regarded with admiration in another.

IQ tests are garbage. All they really are useful for is to identify "learning difficulties" for people who cannot learn properly in the school system designed for the masses, so that they can get shoved into the special education class where they are taught skills that will make them more productive in that same school system. High school has more choice, but elementary school can be torture for those whose primary medium of expression is not verbal. That so much effort and money has to be spent in order to fit someone with different abilities into the mold of the mainstream is pathetic.

It is commonly assumed to be as such because people see certain correlations in other people and then automatically assume that if they see one element of that assumed correlation, that the correlation must be there. Thus, as we age, we learn to generalize, and as a result we begin to take many things for granted. Having a detail-focused mind can make you exceptional at some things, but can also make it more difficult to socialize. I tried to argue with someone in a conversation this summer about how not all TNA-wearing teenagers are automatically preps who read shallow books and care only about their makeup, boys, and rumour-spreading. There are very few real "goths", "nerds", "jocks", etc. Most, if not all, people I've met are pretty much a mix-and-match of all of the characteristics of these stereotypes combined. And there is no reasonable correlation between belonging to these categories and getting good grades, either.

Last edited by MathGirl on 19 Sep 2010, 9:50 pm, edited 2 times in total.

Later on.

So someone who can hold down a job and live independently but needs to use sign-language is higher-functioning than someone who speaks and writes fluently but requires 24/7 care? Aren't you contradicting what you said earlier? That's a truly terrible measure.

If you're going to measure functioning levels at all-- not that I see why you would-- why not a scale of the person's overall ability to function in their environment in the way they want to, as reported by that person?

Hey, if that person would not have existed without 24/7 care, then I would say its low functioning. What other way would you describe it? "Function in their environment in the way they want to" is irrelevant if you aren't going to survive. Maybe I want to refuse to eat food and drink water. I WILL DIE!! You can't get what you want if you are going to live a lifestyle that would end in early death.

I do not give a rats whether something is considered a "disability" so long as someone is able to take basic care of themselves. Look at it this way...if the world were full of low functioning autistics, the human race would go extinct really soon. You can enjoy yourselves all you want in whatever style you want, but you need to do it in a manner that will ensure a functional society. I'm not trying to insult low functioning autistics, I just don't see how you can say they are "different" but at the same time "normal". Of course, low functioning autistics has their own strengths and gifts too.

I am in favor of abandoning functioning lables entirely. They don't give information and they encourage people to jump to conclusions.

What does "severe" autism mean? Is the person verbal? Is he non-verbal and uses a PECS board to communicate? Is he non-verbal and uses a standard computer keyboard with monitor to communicate? You just don't know from the word "severe". You have to guess. And then you wind up also guessing lots of other things. Functioning labels encourage guessing and guesses will sometimes be terribly wrong.

I think it's far better to have labels stick to the pragmatic. Don't make people guess. The information people actually need is what assistance and technologies a person needs. Glasses? Crutches? A hearing aid? A PECS board? A standard computer keyboard and monitor? An aid to check once a week that nothing terrible has happened? An aid to come over every day to prepare food and provide some nursing care? Money because they are unlikely to be able to hold a job? Money to supplement the part time job they are able to hold? Help finding a full time job? This is the necessary information to put in a person's record and it's what people guess at when they see functioning labels. I think it's better to abandon the functioning labels, remove the guesseowrk and just put what a person actually needs in their record which will change over time anyway.

Yes. The whole point is, the abilities required for survival will differ from society to society. If you lived on a farm and could make your food for yourself for the entire year, you wouldn't have to be able to talk or to hear in order to be able to sustain yourself. One autistic may be good at cooking their own food, but another autistic may barely be able to do it. One autistic I know does not have any sensory problems and is very good at organizing events and bringing people together, as well as holding conversations, but cannot balance his own bills or stay organized without external support. Another autistic I know lives independently just fine (on disability, though) and is relatively good at mathematics, but has extreme sensory issues and all of his social interaction is either reciting quotes from memory, or talking about his special interests in a completely one-sided monologue.

Hmm...I guess I may be oblivious to how specialists diagnose it. I guess there does exist autistics who can't speak but knows how to do really well any activities that does not require talking. I think the disagreement between us is what specialists consider "severe".

With good reason. The specialists disagree on it, too.

The thing that's most significant to me regarding this issue is: what useful purpose does it serve to divide people up into "mild, moderate, and severe" categories? Is it actually helpful to the individuals being thus categorized? Does it add to the human scientific knowledge pool based on actual, evidence-based assessments of reality? Or are the divisions merely being invoked for the convenience and comfort of the folks likely to be doing the categorizing?

Because I have a really big problem when it's the last case. There is still a huge problem even in the realm of supposedly "serious" autism research with terribly low ethical and evidential standards being applied to autistics. Granted there are some people working to change this (at great personal cost, even) and for that I am grateful and encouraged. But the problem nonetheless still exists and nobody is doing anyone any actual favors by making up arbitrary "mild, moderate, and severe" criteria based on what amounts to a cursory impression at most of a few other autistics.

Also, specifically regarding the original post in this topic...gah, I know they weren't meant this way, but the descriptions of other people (autistics other than the OP) struck me as very...unfair. That's perhaps not the EXACT right word, but what I mean by "unfair" is that the OP was describing specific other persons in a way that made a ton of assumptions about their inner mental and cognitive states based on a few examples of their supposed responsiveness (or lack thereof) to the "external world".

Yes, it's possible that the assumptions made might actually be true for some people (in some respects, at least). I am not trying to be the "political correctness police" here or to suggest that everyone actually has identical intellectual abilities in every area regardless of how they appear on the outside. Clearly different people are different. But the existence of difference in specific abilities doesn't justify or provide evidence for making blanket assumptions about a person's entire inner consciousness.

Now, please don't take any of this to mean I am calling out the OP as a Terrible Horrible Person. The viewpoint espoused in the original topic post isn't exactly uncommon, and it's very easy to see where the OP got those ideas just from looking at how autistic and other disabled people in general are talked about in the media and so on. But I don't believe in just accepting the status quo when it comes to that kind of thing. I don't believe autistics are obligated to settle for low standards just because low standards make it easier for others (or even ourselves) to talk about us in a convenient, arbitrary-category-based vocabulary.

So basically what I'm saying is that from what I've observed, whenever arbitrary and highly speculative criteria are applied to box us into "functioning levels", many of us end up written off, left out of having a say in decisions affecting us, not taken seriously because we don't neatly or consistently fit any of the available categories, etc.

Mind you, I am not saying that categorization is always bad or anything -- I mean "autistic" is itself a category and personally I think it's a useful one for referencing a certain (but quite broad) style of atypical brain development. But I honestly do NOT think it's useful or ethically valid to utilize "mild, moderate, and severe" categories in reference to entire individuals.

At most I would say terms like "mild, moderate, and severe" should be used to refer to very very specific skills (e.g., a person might have mild, moderate, or severe difficulty with using speech consistently or jumping rope or fixing cars or feeding themselves) and even then, with the understanding that the term is contextually-based in a certain time and place in a person's life. In order to use designations like this responsibly (something most people don't seem inclined to bother doing), you absolutely need to confine them to very specific contexts, and avoid trying to apply them too widely. I have seen some "decent" autism research papers that refer to "severity" but what makes those papers decent in the first place is that the "rankings" are based SOLELY and EXCLUSIVELY on some very specific scale or measure, and this scale or measure is NOT described as being the be-all end-all of someone's worth as a person.

So in summary, I disagree with the kind of category designations suggested in the OP. From everything I've observed, when you apply that kind of thing, you end up with people being either totally written off and presumed permanently incapable of doing various things or "relating to the world" or whatnot (and treated accordingly, which invariably translates to "badly"), or on the other hand, people being literally endangered through the denial of needed services because of a perception that only "severe" people would need help with X and they're considered "mild" or "moderate" based on maybe two or three or four things someone else has observed about them.

Finally, PLEASE note that this comment is NOT a personal attack on the OP. I can see that the OP is coming from a very common, even mainstream point of view, and we are all (autistic or not) susceptible in some contexts to absorbing that kind of view (seeing as we do not all live in underground bunkers or anything). Rather, I am commenting in what I hope is a fairly neutral and impersonal (but still emphatic) manner on *the phenomenon itself of speculative categorization*.

...and hopefully at least some of that made sense. My own language skills aren't really well suited to this kind of discussion which is why I usually stay out of such things, I get into loops and tangents everywhere and often can't simultaneously write and understand whether my writing makes sense. But I know there are useful thoughts in my brain about this stuff and it's important to address so I made an attempt.

- Anne

I guess what has happened is that I have come in contact with too many people who were employing the categories. About 90% of the people I know in real life label autistic people in such manner. Then, I thought that I find it hard to believe that so many people can be wrong, and that there must be some truth to the classification. I had a talk with the mother of J., the boy I talked about in my OP, and she was saying how she doesn't think her son would ever be able to go to university or even college like I do. At that point, I've decided that there must be some truth to the categories and decided to try to clarify it for myself by putting out a description of how I think it makes sense in my mind, so that I could have people point out any specific flaws in my argument and help me clear up and misunderstandings.

As for the autistic people I've been talking about in my post, I have to make assumptions because I don't know them very well. The only person I know relatively well is J., whose mother I've talked to and she's someone who knows him the best. She is critical of functioning labels, too, even though in the beginning I thought that she was embracing them. I showed her this thread.

I guess that's what I get for not spending enough time on this forum and instead, littering my brain with the bias of people I come in contact with in the real world.

As for the rest of your points, I completely agree. I don't know what scales the professionals use specifically, and even if I employed the "mild, moderate, severe" categories, I would apply them very loosely and generally before, but not without, considering specific strengths and weaknesses. Looking at this classification from my own perspective, and not a widely-accepted perspective I was trying to grasp (which I now understand is wrong) only specific skills should be considered on a severity scale.

I suppose I have "mild" autism. To be honest I've tried to ignore it for 10 years and never let it get me down or make excuses. I've functioned pretty well - but there are certain social conventions I just don't grasp/get. For instance I can't function at parties. Unless I'm there early enough to connect, I never integrate. I usually just stand around by myself eating a lot. I'm sure I just seem really "odd."

As an adult, I've functioned fairly well. As a teenager, nobody knew what was "wrong" with me and I was just a target of abuse.

I think personally it is very hard to measure severity. I think though that you can get a general feel for where overall you might put them on the spectrum.

However, it is a strange thing when you look at a person as a whole. Me for example, I have very uneven abilities and disabilities. It is like I got over some of my childhood problems and managed to get them at not too bad levels, but other problems I have been able to do nothing about and have got so much worse.

For example my social skills are greatly improved, but my visual processing is so messed up that I cant even look at someone for a second, and this pretty much renders my social skills useless anyway. Noone wants to conduct a conversation with someone with their eyes half closed, or who is looking at the ground.