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r2d2
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23 Nov 2014, 8:08 am

I found this PDF file online that I thought might be useful.

Severity Scale - levels 0-3

level 0:Requiring no support / Level 1 Mild - Requiring Support/ Level 2 Moderate Requiring Substantial Support

Level 3 Severe - 3/Requiring very substantial support

There is a fairly detailed chart here - from psychiatry.org:

CLINICIAN-RATED SEVERITY OF
AUTISM SPECTRUM AND SOCIAL COMMUNICATION DISORDERS

Mild
Requiring support
(i.e., Without supports in place, deficits in social communication cause noticeable impairments. Has difficulty initiating social interactions and demonstrates clear examples of atypical or unsuccessful responses to social overtures of others. May appear to have decreased interest in social interactions.)

Moderate
Requiring SUBSTANTIAL support
(i.e., Marked deficits in verbal and nonverbal social communication skills; social impairments apparent even with supports in place; limited initiation of social interactions and reduced or abnormal response to social overtures from others.)

Severe
Requiring VERY SUBSTANTIAL support
(i.e., Severe deficits in verbal and nonverbal social communication skills cause severe impairments in functioning; very limited initiation of social interactions and minimal response to social overtures from others.)
RESTRICTED INTERESTS and REPETITIVE BEHAVIORS:
Rate the level of interference in functioning and support required as a result of RESTRICTED INTERESTS and REPETITIVE BEHAVIORS for this individual.

None

Mild
Requiring support
(i.e., Rituals and repetitive behaviors cause significant interference with functioning in one or more contexts. Resists attempts by others to interrupt RRBs or to be redirected from fixated interest.)

Moderate
Requiring SUBSTANTIAL support
(i.e., RRBs and/or preoccupations and/or fixated interests appear frequently enough to be obvious to the casual observer and interfere with functioning in a variety of contexts. Distress or frustration is apparent when RRBs are interrupted; difficult to redirect from fixated interest.)

Severe
Requiring VERY SUBSTANTIAL support
(i.e., Preoccupations, fixed rituals and/or repetitive behaviors markedly interfere with functioning in all spheres. Marked distress when rituals or routines are interrupted; very difficult to redirect from fixated interest or returns to it quickly.)

Copyright © 2013 American Psychiatric Association. All Rights Reserved.
This material can be reproduced without permission by researchers and by clinicians for use with their patients.
Instructions to Clinicians




http://www.google.com/url?sa=t&rct=j&q= ... 5997,d.cGU


I suppose most people who were previously diagnosed or would have been diagnosed with Asperger's would now be diagnosed with ASD Severity Scale 1.


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Last edited by r2d2 on 23 Nov 2014, 11:07 am, edited 1 time in total.

Shep
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23 Nov 2014, 8:38 am

I think that while this is a step in the right direction, the "Asperger's" diagnosis should NOT be removed entirely. It should instead be synonymous with Level 0 (Maybe also Level 1?)

That being said, knowing Autism is a spectrum, I am curious if we CAN categorize it into only four groups. It'll be interesting to see if this leads into something more useful down the road -- right now as far as I know, Autism is just a broad sticker. It's like saying "happy" when there's anywhere from "hey look, a penny!" to ecstatic love-fests. If we can categorize it into a proper amount of different levels, this would significantly help the community as a whole I believe. Being able to form support groups out of the levels would most definitely help the interconnectedness of this community.

Thank you for sharing this! :D



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23 Nov 2014, 9:05 am

I am "mild" but it doesn't feel mild.

And it is not just "social deficits"; we can have other brain function deficits too.

That is why we may be called "strange" or "eccentric".



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23 Nov 2014, 9:18 am

Shep wrote:
I think that while this is a step in the right direction, the "Asperger's" diagnosis should NOT be removed entirely. It should instead be synonymous with Level 0 (Maybe also Level 1?)


I think you are misunderstanding the severity scale and Aspergers. Level=0 precludes diagnosis. It's subclinical. Being assessed at level 0 means the symptom is not a significant issue for you and you are not autistic.

People with a DSM IV Aspergers Disorder may present symtoms that would be rated 1-3 on the DSM 5 scale. There are people with an Aspergers DIsorder diagnosis who have functional issues in the diagnostic criteria that bring them nowhere near 1, let alone 0. It's a mistake to look at the most successful and functionally skillful people with Aspergers and think of them as typical.

People with only level 0 traits will not get an autism diagnosis. An ASD diagnosis requires symptoms that require support. If you have symptoms but don't require any support, then you would be considered subclinical, and in the BAP (broader autistic phenotype) rather than on the spectrum.

It's equally important to be clear about what "requires" support means--it doesn't mean you need nursing staff attending to you through every minute of every day, but you do need help with some aspects of life, this help could be in the form of systems and processes that allow you to work around the things you have difficulty with, or it could mean you have people who help you with areas of life... Just because you live alone and have a job, this doesn't mean you aren't living a life with support.

I haven't seen a lot of statistics around this but one number I have seen is that around 1 in 5 people with Aspergers are self-supporting and independent. This large group of people would still be viewed as "requiring support" because their success is achieved with the use of coping mechanisms, support systems and strategies that an NT person would not need.

It's just completely wrong to equate Aspergers with a level 0 severity rating.
There is no ASD level 0. Level 0 means no ASD.



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23 Nov 2014, 10:59 am

Adamantium wrote:
...An ASD diagnosis requires symptoms that require support. If you have symptoms but don't require any support, then you would be considered subclinical, and in the BAP (broader autistic phenotype) rather than on the spectrum....

That is how I read the DSM-5 criteria and this worksheet. Unfortunately, I see some individuals with sub-Level 1 ASD being excluded from a diagnosis simply because they are considered to have no "deficits" (See criteria A.1. through A.3.). Might the lack of deficits be the result of having observable and even quantifiable difficulties that don't rise to the diagnostician's idea of deficits? Might the lack of deficits also be the result of well-learned CBT or simple autodidactic masking skills? If not, are those individuals who lose out on a diagnosis for lack of deficits truly not ASD? In other words, are they victims of their own lack of deficit severities or adaptation skills, and, as such, no longer have ASD?

Adamantium wrote:
...It's equally important to be clear about what "requires" support means--it doesn't mean you need nursing staff attending to you through every minute of every day, but you do need help with some aspects of life, this help could be in the form of systems and processes that allow you to work around the things you have difficulty with, or it could mean you have people who help you with areas of life... Just because you live alone and have a job, this doesn't mean you aren't living a life with support....

My primary complaint with the DSM-5 criteria and their application is that criteria A.1. through A.3. presupposes every diagnostician will consider every deficit similarly. Without more verbose criteria, or, at least, examples of key quantifiable deficits, these criteria will likely have widely varying applications at least until a consensus develops in the absence of verbose criteria and examples.

Adamantium wrote:
...I haven't seen a lot of statistics around this but one number I have seen is that around 1 in 5 people with Aspergers are self-supporting and independent. This large group of people would still be viewed as "requiring support" because their success is achieved with the use of coping mechanisms, support systems and strategies that an NT person would not need....

I hope that your description is accurate; it seems logical and fair to me. But, I haven't seen evidence that the criterion-heads agree with you. And, I admit that I amn't a diagnostician or other psychological professional. Just asking questions here about the DSM-5 criteria that has always bugged me. :D


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23 Nov 2014, 11:52 am

My impression is that more than 1 out of 5 Aspies are fully independent at, say, age 35.

I believe the 1 in 5 might be true for people 25 and under. The economy probably pays a role with that as well.

I wouldn't be surprised if at least half of "normal" people 25 and under are not "fully independent."

The oft-mentioned unemployment rate of 80% amongst autistic, I find, is really excessive. I would estimate that between a quarter and a half of all people on this Site have jobs.

I would consider someone "fully independent" if he/she is taking care of his/her parents while living with them--especially if the person is paying for his/her own food, gas, etc. There is a considerable level of responsibility required to take care of parents--even with the helped of skilled nursing.

I'm also thinking about the concept of Level "0." Isn't there a "level 0" in cancer diagnoses--wherein the cancer is present but is, perhaps, "pre-cancerous?" Or may become cancer under stressful conditions

The same could be said for someone who is "sub-clinical" at the moment--but could, under stress, revert to a "diagnosable" state.



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23 Nov 2014, 12:04 pm

kraftiekortie wrote:
My impression is that more than 1 out of 5 Aspies are fully independent at, say, age 35.

I believe the 1 in 5 might be true for people 25 and under. The economy probably pays a role with that as well.

The oft-mentioned unemployment rate of 80% amongst autistic, I find, is really excessive. I would estimate that between a quarter and a half of all people on this Site have jobs.

I would consider someone "fully independent" if he/she is taking care of his/her parents while living with them--especially if the person is paying for his/her own food, gas, etc. There is a considerable level of responsibility required to take care of parents--even with the helped of skilled nursing.

I'm also thinking about the concept of Level "0." Isn't there a "level 0" in cancer diagnoses--wherein the cancer is present but is, perhaps, "pre-cancerous?" Or may become cancer under stressful conditions

The same could be said for someone who is "sub-clinical" at the moment--but could, under stress, revert to a "diagnosable" state.


I'm pretty sure that close to half or more of Aspies at least in the U.S. are working and living more or less independently. They may be experiencing social difficulties and anxiety and in some cases they may have trouble holding down a job or taking care of themselves as well as they should. But, I think close to half or more are pretty much making it.

My thoughts about the idea of Autism Severity Scale 0 - Is that there probably are people who are neurologically autistic and basically think autistically and have many autistic characteristics - but they simply are not suffering any disability from it. In other words their anxiety is manageable, they are the quiet type but still have enough natural social skills to avoid isolation. There has been a common rumor for some time that the Founder of Facebook, Mark Zuckerberg has Asperger Syndrome. Well, that may or may not be true. But if it is true - it's hard to describe someone who accumulated 33.1 Billion dollars before the age of 30 and who dines at the White House and with European Royalty as someone who is disabled or socially lacking.


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23 Nov 2014, 12:40 pm

I'm diagnosed as level 2


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AspieUtah
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23 Nov 2014, 1:02 pm

r2d2 wrote:
...there probably are people who are neurologically autistic and basically think autistically and have many autistic characteristics - but they simply are not suffering any disability from it....

Indeed. But, the DSM-5 criteria appear to exclude a diagnosis for such people. In other words, there are individuals who have a neurodevelopmental disorder (ND) who, because of a lack of related disabilities or deficits, don't qualify for a diagnosis. I believe that an ND exists apart from any deficit and, therefore, should be diagnosed as such even if the characteristics don't rise to the level of being disabled or deficient. Since when did the existence of such disabilities or deficits be required to diagnose an ND?


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Last edited by AspieUtah on 23 Nov 2014, 1:04 pm, edited 1 time in total.

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23 Nov 2014, 1:03 pm

My overall impression, from the WP community and post history, is that the older members (40-ish and over) here have a quite a higher incidence of adaptation and independent self-supporting lives. Possibly that is because we were expected to, and no other option was available to us. The fact that Aspergers was unrecognised, except as "eccentricity", possibly meant that we escaped the direct effects of the stigmatisation of the label applied to people at an early age.

The other thing that we "escaped" is the internalisation of the stigma ("internalised oppression"). We didn't know we had Aspergers, (nor did others) so we didn't think or believe "I have Aspergers so I will never amount to anything, so I am stuffed..." Largely, we did what we had to do, whatever it was, to do what others generally did - earn an income, establish a place to live, form relationships.

We had grown up being expected to try harder until we achieved goals. It was a different time, and we had the benefit of a very different economy, and there was not the marked individualism that there is today. University was harder to get in to, but very affordable (at least where I live) once you got in - merit based, not user-pays. Full employment was considered a policy goal that governments could and should promote, and they did.

Some people liked our quietness and "personal quirks". We didn't know any other way to be ourselves and did what we could to "fit in", even if privately we didn't always feel that the fit was a very comfortable one.
And sometimes it was a miserable one. But we took the rough with the smooth and got on with it as best we could because no other option seemed viable nor available.



r2d2
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23 Nov 2014, 2:05 pm

B19 wrote:
My overall impression, from the WP community and post history, is that the older members (40-ish and over) here have a quite a higher incidence of adaptation and independent self-supporting lives. Possibly that is because we were expected to, and no other option was available to us. The fact that Aspergers was unrecognised, except as "eccentricity", possibly meant that we escaped the direct effects of the stigmatisation of the label applied to people at an early age.

The other thing that we "escaped" is the internalisation of the stigma ("internalised oppression"). We didn't know we had Aspergers, (nor did others) so we didn't think or believe "I have Aspergers so I will never amount to anything, so I am stuffed..." Largely, we did what we had to do, whatever it was, to do what others generally did - earn an income, establish a place to live, form relationships.

We had grown up being expected to try harder until we achieved goals. It was a different time, and we had the benefit of a very different economy, and there was not the marked individualism that there is today. University was harder to get in to, but very affordable (at least where I live) once you got in - merit based, not user-pays. Full employment was considered a policy goal that governments could and should promote, and they did.

Some people liked our quietness and "personal quirks". We didn't know any other way to be ourselves and did what we could to "fit in", even if privately we didn't always feel that the fit was a very comfortable one.
And sometimes it was a miserable one. But we took the rough with the smooth and got on with it as best we could because no other option seemed viable nor available.


I suppose both the new situation and the old situation had both blessings and curses. Nobody ever cut me a break because I had a disability. I was just viewed as weird, awkward, nervous and clumsy. There was no concept that this was due to a diagnosable condition. When I couldn't perform well enough because anxiety and social issues that were beyond my control got in the way - it was not thought of as a disability - I was just plain fxcking up.

Now parts of that were very, very painful. And it would seem that the world could have been and should have been more understanding. On the other hand - I never limited myself on the basis of having Asperger's or Autism - Because I didn't know I had it. As a result I ended up working in intensive care units taking care of life support systems around the world. Perhaps, if I had known in my early/mid twenties the nature of my diagnosis - I would have concluded that is something I cannot do. Perhaps, there would have been other accomplishments I had made - that if I had known at the time I started down that road that I had a diagnosis that I and others may have suggested made a lot of things way too much for me to handle. So, to an extent perhaps I accomplished some things because I simply didn't know I couldn't do it.


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23 Nov 2014, 2:59 pm

Disability is seen even with supports in place for me. I guess being able to say more than short sentences/without much challenging behaviors keeps me out of Level 2...


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23 Nov 2014, 3:58 pm

I haven't been diagnosed under the DSM V criteria, but still with IV in effect (2012).

However, all things considering, the only thing that set me off from being on the "regular" autism spectrum was my early language development... way earlier than my peers even. And that in general seems to be one of my main interests as an aspie anyway. But aside from that, a therapist told me they don't get more more autistic than you (me).

I'd probably shift between 1, 2 and 3 as far as functioning goes in the broader scope of the "norm". My interests and preoccupations go before everything including interpersonal relationships and if possible I would totally walk out of a job just so I could engage in things I actually like to do (I suppose I should call that "poor impulse control" or just being passionate about other things). I suppose it also depends on my mindset. If I'm depressed I'm as far up the scale as they go; I'm a serious non-functional mess (but so far I manage to keep that at bay with proper success. Especially since I know what triggers it; one being; not being able to engage in my interests).

Yet, perhaps due to the fact that I'm fairly bright I know how to ask for help and will do so if needed. Not being that shy to do so might help there as well. I can figure out most things myself, but that does not warrant that I will do these things the way intended. And that's how it seems we are judged anyway. You don't get judged for being able to do something at all, it all depends on how peers do it... that's in a sense the basics of psychology and observation. No frame of reference means no deviation.

The one thing I don't have going on that seems fairly common; I abhor repetition. I hate it with a passion. And actively try to find a different way to do something most of the time.



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23 Nov 2014, 4:38 pm

AspieUtah wrote:
That is how I read the DSM-5 criteria and this worksheet. Unfortunately, I see some individuals with sub-Level 1 ASD being excluded from a diagnosis simply because they are considered to have no "deficits" (See criteria A.1. through A.3.). Might the lack of deficits be the result of having observable and even quantifiable difficulties that don't rise to the diagnostician's idea of deficits? Might the lack of deficits also be the result of well-learned CBT or simple autodidactic masking skills? If not, are those individuals who lose out on a diagnosis for lack of deficits truly not ASD? In other words, are they victims of their own lack of deficit severities or adaptation skills, and, as such, no longer have ASD?

I assume these diagnosis criteria are for shrinks to use if you request help (or get hauled over by your parents). If you don't require support, you won't go to a shrink, so they don't need to care how to label you.


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1024
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23 Nov 2014, 4:48 pm

The scales are somewhat confusing. The "restricted interests and repetitive behaviors" scale roughly corresponds to "B" symptoms in the ASD criteria ( https://depts.washington.edu/dbpeds/Scr ... Guidelines)Feb2013.pdf ), more specifically to B3 and B1. 2 out of the 4 "B" symptoms are required, with the other too being resistance to change and sensory problems. This means that B1 and B3 are not even necessarily required for a diagnosis, and I guess the other two symptoms are actually more likely to cause problems if they are present.


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