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Does anyone know the specifics of how support/severity levels are assessed/assigned?

the_tortoise

autie; means well; struggles w/words; self-expert
V.I.P Member
See question in title.

I know there are adaptive functioning scales that are used sometimes, but I don't know what these look at ....what the questions ask about and how they ask, how they attempt to create a scale/scoring system.

The specifics remain a mystery to me.....Actually the whole severity/supports scale is a mystery to me, since there are no examples that don't rely almost entirely on vague words that only have meaning in relation to other words in a system of categories. (Similar to words like "big" and "small" -- those words have literally no meaning by themselves, only in relation to each other and to similar words that indicate relative size.)

Is it just a sort of clinical free-for-all where there is no recognized system beyond the judgement of the clinician, or what?
 
I don't know, but I'm most interested all of a sudden. Last week I saw a GP to get a reference to a shrink to get diagnosed with HFA, and she also referred me to a counsellor regarding support. My eligibility for support is to be assessed independently of my diagnosis, I could have done it today by phone but left a message asking for it to be done in person as it would be expensive to do by phone. As a result I'll be getting an appointment for some time in the next week or two instead (but I'll be further ahead, as if I'm eligible I'll move on to the next stage immediately rather than having another appointment).

I'll know a lot more about it soon, it would be nice to know more about it before the appointment. I'll let you know what happens as I learn, and will be happy to follow this thread.
 
Try this: DSM 5 - Autism Levels. This lists the diagnostic criteria for autism, and the various levels of severity (in "Table 2").

Thanks for trying to help :)

I have read that before, though....and it tells me virtually nothing.

"Great distress" versus "distress" is like saying "one is big, the other is small" -- only that the first is bigger than the other, not what the actual size of either of the things is.

What is or is not obvious to a casual observer?

What counts as "limited" or "reduced" or "narrow"(?) -- again, all of these words have only relative meanings. Where is the cut-off for "rarely"? My idea of "rare" and your idea of "rare" may be quite different, since there is no agreed-upon quantity or range of quantities attached. What is "marked" versus "severe"? How are they diffferent? These are all qualitative terms, all relative terms -- what are the actual things and quantities involved? They have no meaning by themselves without specific things and quantities to refer to, and without knowing what those things are supposed to be.....and without some standard of measurement that involves actual quantities and concrete things you could theoretically have as many definitions of these terms as you have people interpreting and applying them.
 
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I think this is the problem with Aspergers or Autism level 1 diagnosis, it's dependent on observed behaviours and on the individual diagnosings experience and opinion. A lot of historic diagnoses have reflected male norms too, so that the way effects show for women are not well recognised. I wonder if the brain differences are easily measurably different enough to make this a more reliable element of diagnosis?
 
I think this is the problem with Aspergers or Autism level 1 diagnosis,

To me it is a problem with all the levels. They don't talk enough about the actual things -- behaviors or specific abilities or support-actions required.
 
I know what you mean. It's like, when the doctor asks you what pain you are experiencing on a scale of 1 to 10, ten being the greatest possible pain - how can one ever know what the greatest possible pain is like, and whether one is experiencing it?

Perhaps they have case studies, with examples, and what level they qualifiy for.
 
I know what you mean. It's like, when the doctor asks you what pain you are experiencing on a scale of 1 to 10, ten being the greatest possible pain - how can one ever know what the greatest possible pain is like, and whether one is experiencing it?

I had this explained to me. I was concerned about giving an accurate answer, I figured that people with a scientific background are asking me this and if they only wanted a very approximate answer they'd ask on a scale of 1 to 3. Sig figs. Not so. They don't really care about the accuracy, they don't care what the number is when you get there. What they want is to be able to track progress, they can ask again later and there's room for you to indicate that you're getting better or worse by adjusting the number either way as your condition changes.
 
I had this explained to me. I was concerned about giving an accurate answer, I figured that people with a scientific background are asking me this and if they only wanted a very approximate answer they'd ask on a scale of 1 to 3. Sig figs. Not so. They don't really care about the accuracy, they don't care what the number is when you get there. What they want is to be able to track progress, they can ask again later and there's room for you to indicate that you're getting better or worse by adjusting the number either way as your condition changes.
Ah, got it - thanks for explaining.
 
I just know in my case it's involved a lot of testing and assessing throughout my life. When you're moderate to severe, it's not a one time deal. I've been examined, tested and evaluated multiple times. Most of that was in relation to occupational therapy, special schooling and of course medical insurance.
 
I just know in my case it's involved a lot of testing and assessing throughout my life. When you're moderate to severe, it's not a one time deal. I've been examined, tested and evaluated multiple times. Most of that was in relation to occupational therapy, special schooling and of course medical insurance.

It makes sense that the more severe the issues are the more services and supports and therapies you'd need, so the more assessments you'd have both initially and to assess progress -- especially given that it would start when you were very young, and the rapid development of childhood and adolescence would require more frequent assessment.

It can involve more than one instance of assessing and testing for those with mild problems, too, especially if they are at the borderline of "clinicially significant" for whatever struggles they are having, or if they are misdiagnosed (once or many times) -- it's just from a different angle where most or all of it might be that nobody can figure out what's wrong or how to help.

I wonder if some part of the difference with assessment and testing (like how sometimes it can be a one-off thing versus never being a one-off thing) is also that those with milder problems are often not diagnosed until later in childhood or in adulthood, when there are few or no services. If there were more services for older children and adults there might be more assessments even for those with milder difficulties. In a lot of places there is nothing for anyone over age 6, 16, 18, 19, 20, or 21 (etc, cut-off ages vary a lot) unless they have a tested IQ score of less than 70 or unless they can pay out of pocket (sometimes not even when they can pay out of pocket).

I don't know if I've had a lot of assessment or only a little bit. I just know there were concerns about me from toddlerhood and the assessment and attempts to fix me started when I was a kid, but it wasn't specifically looking at/for autism until after I was assessed by an audiologist and OT who suspected it when I was in my twenties.
 
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