ASD severity levels explained (hopefully)

[tazz]

This keeps popping up in threads and I'm always confused.

The DSM criteria states that severity should be specified for TWO different aspects of the diagnosis. A) Social communication and interaction; and B) Restricted and repetitive behaviour.

So the way I interpret this is that one person can have different severity levels in A and B. For example, Severity 2 social communication, but severity 1 restricted and repetitive behaviour.

There's even a table that shows different criteria for each (see below). No-one ever gives two severity numbers though. Why is that?

Please note, I'm not intending to get into whether severity levels are of any use or whether they end up being misleading or offensive to anyone. I'm just trying to understand the way that DSM intends them to be used. Specifically why is it that people say something like "I'm ASD1" but they never say "I'm ASD with severity 2 for social communication and severity 1 for restricted and repetitive behaviour."

 

[Judge]

One thing I can't help but occasionally ponder each time I review the DSM-V "support levels". Whether or not in any way that they have been influenced or even lobbied in any way by bureaucrats citing government guidelines over entitlement eligibility.

Ideally the answer would of course be "no". However in American society...everything seems to have the same common denominator rooted in fiscal impact of some sort. That inevitable meeting and/or clash between pencil-pushers, legislators and "the medical establishment".

 

[tazz]

One thing I can't help but occasionally ponder each time I review the DSM-V "support levels". Whether or not in any way that they have been influenced or even lobbied in any way by bureaucrats citing government guidelines over entitlement eligibility.

Ideally the answer would of course be "no". However in American society...everything seems to have the same common denominator rooted in fiscal impact of some sort. That inevitable meeting and/or clash between pencil-pushers and "the medical establishment".

Thanks @Judge , but let's leave that for a different thread. I'm just interested here in how it's supposed to work. Two severity levels or one?

 

[Judge]

Thanks @Judge , but let's leave that for a different thread. I'm just interested here in how it's supposed to work. Two severity levels or one?

Unfortunately what I posted may actually be part of the same equation. That how it works in the eyes of some may be different than that of another, and with a somewhat different agenda. Making the process that much more complicated than purely on a neurological level.

But then much of what I am saying is in fact something more relevant to our side of the pond and not yours.

Ironically though with all this considered, I suspect such interests would also prefer to operate on a premise of only two considerations of severity period. Those who are entitled to benefits, and those who are not.

But then there's also another major caveat to consider, strictly along medical guidelines. That globally speaking, not everyone in the medical community is on the same page, and often by choice. Plus you have two similar, but not identical protocols in place. That of the DSM-V, but also the ICD-11. And perhaps worst of all IMO, those physicians who continue to "freelance" the diagnostic process to fit their own understanding of autism.

Making it understandably difficult to be able to formulate a concise answer to your question. One thing I will say, is that I find reading the DSM-V a bit easier than the ICD-11 that sometimes causes my eyes to glaze over.

Here you may find a lot of people classified as "ASD Level One" who have great difficulty of one kind or another. In some case putting them on the very periphery of "independent living". Which in the eyes of those who are ASD1 may more vehemently decry that IS a degree of severity in itself, depending on circumstances that the three categories may ultimately not account for.

How is it "supposed to work", indeed. Definitely a good question, but also what we might call a "loaded question".

 

[tazz]

Making it understandably difficult to be able to formulate a concise answer to your question

I dunno - if the interpretation is just inconsistent, then presumably we would see at least a few people who have been given two different severity levels. But we never do - or at least I've never seen it. Have you?

 

[tazz]

loaded question

I'm not asking a loaded question at all. I don't have a hidden agenda here.

"A loaded question is a form of complex question that contains a controversial assumption (e.g., a presumption of guilt). Such questions may be used as a rhetorical tool: the question attempts to limit direct replies to be those that serve the questioner's agenda."
https://en.wikipedia.org/wiki/Loaded_question

 

[Judge]

I'm not asking a loaded question at all. I don't have a hidden agenda here.

Not you- THEM. It's a great question. But a very complicated one that has roots in non-medical origins.

The DSM-V and how their medical decisions may not be so isolated to the medical community alone. That public policy comes into the picture heavily weighted by consideration of entitlements that are at the heart of severity descriptions.

Yet from a human perspective, the very nature of our traits and behaviors relative to our struggles in life may well contradict how the DSM-V structures those same severity levels. However of all the parties influencing the DSM-V, I suspect the autistic community has the least to show for it.

In essence, why the DSM-V structures those severity levels may be of more use to us than simply attempting to parse them relative to what the DSM-V wants the public to think. Though admittedly this may appear to be abstract to someone whose understanding of such relationships is based on Britain's NHS.

As for why the ICD-11 more parallels the DSM-V , one may also consider that some of your nation's bureaucrats may prefer some of the advantages our bureaucrats achieve in being able to limit and regulate entitlements.

Otherwise, what would be the practical purpose in establishing such tiers on an official basis regarding entitlements other than to either upset or pacify autistic people? This is not a discussion of the validity of entitlements. Only a commentary on how they function, and how government universally limits them using a logical metric of severity levels. Where medical evaluations of individuals may or may not weigh so heavily in the decision-making process.

 

[tazz]

For the record - I lived and worked in the US for years and have experienced the healthcare system first hand.

 

[Judge]

For the record - I lived and worked in the US for years and have experienced the healthcare system first hand.

Ok, but then you should better understand what I'm getting at.

That severity levels are not exclusively driven by neurological considerations. That they are primarily guidelines to used (or abused) by bureaucrats largely in the public's pursuit of entitlements.

Beyond that, one is free to speculate as to what one thinks the DSM-V means. I get that. However given what I believe to a be "prime-mover" of such protocols, it seems a moot point in attempting to speculate the differences are or may be over the three tiers. That there's a quantitative rea$on for three of them, rather than two.

A process akin to bureaucrats (not doctors) who ultimately determine the legal monetary value of the loss of a human limb for the purposes of workers compensation.

That so many of us could argue how life in the NT world can be difficult for even those of us defined as ASD1. That much is true, but then we have little choice unless we have access to the very entitlements we are routinely denied. At least those of us in the US, a nation that often seems less-than-caring about the autistic population in general compared to other more "enlightened" countries.

 

[Neonatal RRT]

Perhaps a different perspective: Levels of autism: Symptoms and criteria
"The three-level definition can help educators and healthcare professionals provide a suitable level of support for the individual:

Level 1: The person may be able to live a relatively independent life with minimal support.

Level 2: Substantial support is necessary to help the person communicate and deal with change.

Level 3: The individual may need to depend on others to help them cope with daily life, but medication and therapy can help manage some of the challenges."

The psychologist may, indeed, diagnose someone with a "Level 1 restricted and repetitive behaviors" but a "Level 2 social and communication". I say this because my psychologist scored me on several different metrics and noted, specifically, where I fell within the spectrum. By some metrics, I performed almost neurotypically, and others, on the extreme end of the autism spectrum. On the other hand, I suspect that psychologists may be required to subjectively assign a single level for the purposes of determining whether or not an individual will qualify for assistance programs. Perhaps the language that governments use when determining qualifications only use a single level. Personally, as an ASD-1, I can adapt and overcome some of my issues, and would not qualify for assistance, even though, in very specific areas, I am non-functional or poorly functioning.

It seems a bit nebulous and could be open to cognitive bias and subjectivity, even if cognitive testing were objective. I suspect that there are some individuals labeled as ASD-1 that actually need some substantial support in their lives, and some ASD-2 individuals that might not need as much support as they are given.

 

[Atrapa Almas]

I'm just trying to understand the way that DSM intends them to be used.

They intend them to be used to determine how much public money disabled autists must recieve from the goverment.

Specifically why is it that people say something like "I'm ASD1" but they never say "I'm ASD with severity 2 for social communication and severity 1 for restricted and repetitive behaviour."

Why people say X stuff is not related with the DSM intended use of the diagnose.

People probably say level 1, 2, 3 because its easier.

 

[tazz]

I suspect that psychologists may be required to subjectively assign a single level for the purposes of determining whether or not an individual will qualify for assistance programs.

Thanks. Kinda makes sense. So during the diagnosis, two severity scores might be discussed, one for social communication and another for repetitive and restricted behaviors. But then at the end, the assessor basically says "right, so based on all that, I'm gonna write ASD2 in this letter because it'll help you get the support you need" (for example).

 

[lovely_darlingprettybaby]

This keeps popping up in threads and I'm always confused.

The DSM criteria states that severity should be specified for TWO different aspects of the diagnosis. A) Social communication and interaction; and B) Restricted and repetitive behaviour.

So the way I interpret this is that one person can have different severity levels in A and B. For example, Severity 2 social communication, but severity 1 restricted and repetitive behaviour.

There's even a table that shows different criteria for each (see below). No-one ever gives two severity numbers though. Why is that?

Please note, I'm not intending to get into whether severity levels are of any use or whether they end up being misleading or offensive to anyone. I'm just trying to understand the way that DSM intends them to be used. Specifically why is it that people say something like "I'm ASD1" but they never say "I'm ASD with severity 2 for social communication and severity 1 for restricted and repetitive behaviour."


View attachment 122683

For any kind of condition like adhd and autism, severity is on a spectrum.
Like you could be really chatty at times then totally burnt out
And also you could be rigid in some ways and flexible in others.
I am undiagnosed but I could always multitask
Anyway in some ways you can still struggle a lot in spite of communication levels, rigid and flexible thinking.
So you could be a low functioning autistic and higher functioning at times or in other areas.
I have found fitting others to be really difficult despite being a kind person.
I think I try too hard to fit instead of being wildly unique but that can be challenging too at times, sometimes you want to fit and belong as well.

 

[tazz]

Ok, but then you should better understand what I'm getting at.

Hey! I understand you just fine. I just happen to think what you're saying isn't relevant to my question.

That there's a rea$on for three of them, rather than two.

Maybe it's you that has misunderstood what I'm getting at. I'm not asking why there are three tiers instead of two.

 

[vergil96]

The severity levels don't make sense to me from a personal perspective. I can do all these things. When I do them, however, I get sick from fatigue. I've been struggling with health issues again, because I don't have the time and headspace to eat. How crazy is that?

 

[Judge]

Hey! I understand you just fine. I just happen to think what you're saying isn't relevant to my question.

I apologize that I cannot speculate on a purely medical rationale of why they structured it using three tiers with two common considerations. It can be confusing. We agree. But maybe such a real answer lies elsewhere.

Which is why I for one is unable to get past the most basic concern. How- and why is the DSM-V structured in a clearly more ambigous manner than the DSM-IV? Can we say that since 2013 they know substantially more about autism, or have they simply evolved into a scenario with more questions than answers? Yet another question that cannot be easily answered.

Keeping in mind that such protocols in terms of policy development inevitably involve compromise which is not exclusive to medical reasoning, but other considerations that ultimately must grapple with government oversight. Not to mention that autistic people are pretty much shut out of the process.

A process sometimes referred to as "the horse that comes out as a camel". Despite a consensus of medical minds and scientists who must inevitable negotiate with bureaucrats often behind closed doors. A process in which one can go looking for answers, but not necessarily find the ones we seek- or need.

 

[zaphod]

Thanks for posting this, I was actually just trying to figure this stuff out.

I have seen the word "support" used within the context of severity levels several times.

"social impairments even with supports in place"

"Without supports in place, deficits in in social communication cause noticeable impairments"

What exactly are "supports"?

Somehow I'm imagining a cross between a support animal and a NT-ND translator.

 

[vergil96]

What exactly are "supports"?

I would ask the same question

Somehow I'm imagining a cross between a support animal and a NT-ND translator.

The same thing came to my mind. Like someone nonverbal perhaps? Who uses a tablet to communicate?

 

[zaphod]

I googled it and found a list of autism "supports". The only ones that apply to social impairments would be various types of therapy.

The wording still throws me off though. "In place" suggests to me some kind of social interaction within a controlled environment. If supports means therapy, they should just say it... but then combination of "in place" and "therapy" would mean you're back to square 1 if/when you discontinue therapy.

 

[zaphod]

"Without supports in place, deficits in in social communication cause noticeable impairments"

To me this implies for someone at level 1... when "supports" are in place there are no noticeable social impairments.

Scratching head a bit on that one, wondering how common it can be that someone with autism has no noticeable social impairments with "supports" in place (whatever that is).

If I'm understanding it at all, I have to be level 2, maybe even level 3 socially.