DSM-5 ASD Severity Scale 0-3
23 Nov 2014, 10:47 pm
Actually, for all intents and purposes, could COULD go into relative remission from autism.
In the old days, when it wasn't "known" when one had Asperger's or autism, one frequently experienced something similar to "remission"--except, alas, the symptoms seem to return. However, during the "remissions," strategies were developed which lead to the ability to adapt, successfuly, to the "NT" world around them.
Ironically, I was diagnosed with "autism" at around age 3, in the 1960s. I wasn't one who "didn't know what I had." When I was an older child, I "knew" I "used to be ret*d," and that I had "brain surgery" (it turns out that the "brain surgery" was the administration of an EEG).
Autism, in the 1960s, was considered an inevitably debilitating condition. I was exhibiting quite a few "classic" autistic symptoms, and I had no speech. Fortunately, my mother didn't believe the prognosis, and we proceeding accordingly (perhaps she was too rough at times--and I, probably, bear a grudge because of her rough methods). Subsequently, the diagnosis was changed to "brain damage," which was quite a vague diagnosis in those days; it encompassed, basically, much of ADHD, learning disabilities, and HFA/Asperger's. "Emotionally disturbed" was a similar diagnosis--though I don't believe I carried that "label."
All right, one doesn't quite go into "remission" from their autism--but there are times when one is better able to manage his/her symptoms. To the point where one may be definitely autistic--but not in need of any "support." Under stress, one might revert to a clinical state where "support" may be required.
yournamehere
Veteran
Joined: 22 Oct 2013
Gender: Male
Posts: 1,673
Location: Roaming 150 square miles somewhere in north america
23 Nov 2014, 11:39 pm
It was difficult not having a label, and having people try to make you like everyone else. That was the fix. The hardest road is the best learned. tough it out. It can also put you in the funny farm. Thankfully, I am not there.
The difficulties trying to understand. Reading things four, or five times over, or more. sometimes still not getting it. (I got over that 15 years later).Getting books whacked over my head, beause of a lack of paying attention (very illegal now). I remember walking out of school in first grade so I could beat the bus home. Everyone had to stay in school, and the busses couldn't leave until they found me. The next day, the teacher pulled my hair, yanking on my head, and yelled at me. When she was done, she was soo mad she had a tuft of my hair in her hand. My hair got pulled soo many times as a kid, you could lift me up by it, and I wouldn't feel a thing. I had a small board broke over my head in 11th grade because I always fell asleep in class. I couldn't help it. Always falling asleep. I can't do school. Parent teacher conference my dad said "you seem like a nice enough guy, he must have had it coming". What a brain f**k.
The one thing that this dsm is lacking on is the whole "never had support". I'm not asking for a medal or anything, but as an adult, something, at least mental therapy should be there for what the adults have been through now that others "supposedly" understand.
Most of us got more than an unfair share of absolutely nothing. It made me tough. And what I have bottled up from it, I don't want.
24 Nov 2014, 2:25 am
Adamantium wrote:
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.
What distinguishes Asperger type autism from Kanner type autism in the new criteria then? The way I understood it was that Asperger type autism was synonymous with high functioning autism in the new DSM and presumably, I thought that would mean requiring less support than classical type autism.
ASPartOfMe
Veteran
Joined: 25 Aug 2013
Age: 66
Gender: Male
Posts: 34,419
Location: Long Island, New York
24 Nov 2014, 3:40 am
Jono wrote:
Adamantium wrote:
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.
What distinguishes Asperger type autism from Kanner type autism in the new criteria then? The way I understood it was that Asperger type autism was synonymous with high functioning autism in the new DSM and presumably, I thought that would mean requiring less support than classical type autism.
There is nothing in the DSM 5 that has anything to do with Kanner's or Aspergers
or High Functioning. It's all Autism Spectrum Disorder and the three levels. Aspergers is a former official diagnosis now a colloquial term Kanner's Autism/Classic Autism, High Functioning Autism, always have been colloquial terms.
As far as the widely disbelieved (at least around here) employment survey it was for autistic s in general not aspies in particular. A survey that was just about adult aspies who were diagnosed as adults showed "66% of participants with Asperger's reported suicidal ideation, compared with only 17% of the general population and 59% of patients with psychosis" "35% had planned or attempted suicide during their lifetime". http://www.medicalnewstoday.com/articles/278678.php. Depression is the largest factor with suicide ideation. That is the reality of our "mild" condition. So yes positive feelings are of huge importance yet a lot of what you read here is that most are probably not Autistic at all because they were over-diagnosed, we identify that way because we don't want to be associated with lower functioning, or we want to be hip like Sheldon. So it was downright cruel for the DSM 5 to eliminate what was a helpful diagnosis because because it did produce very positive feelings.
_________________
Professionally Identified and joined WP August 26, 2013
DSM 5: Autism Spectrum Disorder, DSM IV: Aspergers Moderate Severity
It is Autism Acceptance Month
“My autism is not a superpower. It also isn’t some kind of god-forsaken, endless fountain of suffering inflicted on my family. It’s just part of who I am as a person”. - Sara Luterman
24 Nov 2014, 6:42 am
Sheldon is a really BAD caricature of Asperger's. He exhibits few of the positive and most of the negative stereotypes of the "disorder."
It's like a portrayal of Down Syndrome where the character is always slobbering, while speaking what amounts to gibberish.
Of course, people with all forms of autism suffer. It's frustrating always having to "go up the down escalator." That's what I feel like quite often. I'm fortunate that I have enough cognition to survive in the "outer world" (though quite imperfectly).
I can't say if a person isn't "trying hard enough" or has such debilitating symptoms that it precludes him/her from an independent existence--especially on an internet forum.
But, in "real life," I've seen Apathy rear its ugly head--and it's no good--and it could be prevented.
24 Nov 2014, 7:09 am
ASPartOfMe wrote:
Jono wrote:
Adamantium wrote:
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.
What distinguishes Asperger type autism from Kanner type autism in the new criteria then? The way I understood it was that Asperger type autism was synonymous with high functioning autism in the new DSM and presumably, I thought that would mean requiring less support than classical type autism.
There is nothing in the DSM 5 that has anything to do with Kanner's or Aspergers
or High Functioning. It's all Autism Spectrum Disorder and the three levels. Aspergers is a former official diagnosis now a colloquial term Kanner's Autism/Classic Autism, High Functioning Autism, always have been colloquial terms.
As far as the widely disbelieved (at least around here) employment survey it was for autistic s in general not aspies in particular. A survey that was just about adult aspies who were diagnosed as adults showed "66% of participants with Asperger's reported suicidal ideation, compared with only 17% of the general population and 59% of patients with psychosis" "35% had planned or attempted suicide during their lifetime". http://www.medicalnewstoday.com/articles/278678.php. Depression is the largest factor with suicide ideation. That is the reality of our "mild" condition. So yes positive feelings are of huge importance yet a lot of what you read here is that most are probably not Autistic at all because they were over-diagnosed, we identify that way because we don't want to be associated with lower functioning, or we want to be hip like Sheldon. So it was downright cruel for the DSM 5 to eliminate what was a helpful diagnosis because because it did produce very positive feelings.
I think that my question was misunderstood. Yes, I understand that Aspergers is no longer an official diagnosis but what I was getting at is that I thought that what would of been diagnosed as Aspergers in the DSM IV would now simply be regarded colloquially as high functioning autism in the DSM V, which I thought would mean lower down on the severity scale (though still requiring some support obviously). Also, I believe that Asperger type and Kanner type autism is still used colloquially even though it's no longer an official diagnosis.
One more thing, I didn't read anything in that article that suggested that most people with AS didn't really have autism or was over-diagnosed and in fact I've seen a study that suggested that not only suggested that most people who would of been previously diagnosed AS would still be diagnosed with ASD under the new definition, but also that even more people would get a diagnosis of ASD than they would of gotten in any of the old PDD diagnoses. I'm also not denying anything that article says about depression and suicide.
yournamehere
Veteran
Joined: 22 Oct 2013
Gender: Male
Posts: 1,673
Location: Roaming 150 square miles somewhere in north america
24 Nov 2014, 7:37 am
kraftiekortie wrote:
LOL....It's a good thing he could create great cars while channelling that anger!
What good is life without a little humor
.I got all kinds of stories from the old school teachings. Don't know if there was a technical word for it. Now days it is just abuse. Back then it was more like abuse training or something. Like getting punished for having a meltdown. You learn to just keep it inside your head. That was the way society made me do it. It was a zero tolerance public nuisance. I remember one time I had an issue in class in fourth grade. I don't even remember what it was. I had alot of issues. The teacher put a chair next to his desk, made me sit, and asked me a bunch of questions, while the class was all eyes on me, and giggling and stuff. Trying to embarrass me or something, I don't know? I was having a sensory overload big time. All in my own head. Half shut down like I was in a fog, but still needed to connect, or else. The teacher looked at me and said, "you're not looking good, are you feeling o.k.". I was ghost white, blacked out, and hit the floor. To the nurses office I went. That didn't work the way he wanted to. He never tried that one again.
there was no definition for the way I was that I ever heard. It was always an unanswered question. It still is so far.
24 Nov 2014, 8:46 am
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.
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.
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.
I'd second that. ALL of it, actually, but mostly I was thinking about "ASD Level 0." Right now, in my day-to-day life, it's hard to see the autism unless you know it's there. I'm a woman with a lot of kids who likes to sit in a rocking chair and read a book (generally with at least one kid in her lap). I have a messy house with papers all over the counter-- hey, I have a lot of kids. Most of the stuff that you and I know has more to do with autism can be written down to "a lot of kids."
But, even though it's mostly unseen, IT'S STILL THERE. It's like a cancer patient in remission-- you can't see the cancer any more, but they still tire out easily and have a weak immune system from all the chemo. And it might come back. If I sat down and filled out a diagnostic form HONESTLY, based on what's running through my head not on what I can't hide, I'd still be autistic.
Even though it's mostly unseen, IT'S STILL THERE. I still get scared easily, I'm still at a loss in social situations involving more than a few other adults, I still can't track more than two or three things at a time, I still have to be constantly on guard that I don't say something inappropriate, and it's still exhausting. I still hate myself and the disease, and that's still causing GAD and depression.
"Level 0" isn't "not autistic." It's "Congratulations-- You can hide it all by yourself."
_________________
"Alas, our dried voices when we whisper together are quiet and meaningless, as wind in dry grass, or rats' feet over broken glass in our dry cellar." --TS Eliot, "The Hollow Men"
24 Nov 2014, 9:29 am
Note that the present commotion in this thread is not surely relevant to the severity scale topic. It seems to me that many people have survived into adulthood, lived independently, and were then diagnosed with ASD. This suggests that the "requires support" condition is not interpreted as being precluded by living independently. Which is kind of logical: you can survive a flu without treatment, but that doesn't mean that it's not a disease, nor that you wouldn't have benefitted from some antipyretics.
_________________
Maths student. Somewhere between NT and ASD.
24 Nov 2014, 10:05 am
kraftiekortie wrote:
I believe a person could be autistic without requiring support.
One example: there's been a drastic change in a routine at a job site. The autistic person is fortunate that a bathroom is available so he/she could retreat to cry/stim, etc. In this case, the autistic person is using his/her cognitive awareness to offset to consequences of exhibiting autistic behavior in public.
In this case, this person still has autism, but is able to adapt to his/her environment--thus he/she does not require active support.
The person with multiple sclerosis is not always symptomatic--or could adjust to the symptoms enough to maintain employment. This person still has MS, though.
One example: there's been a drastic change in a routine at a job site. The autistic person is fortunate that a bathroom is available so he/she could retreat to cry/stim, etc. In this case, the autistic person is using his/her cognitive awareness to offset to consequences of exhibiting autistic behavior in public.
In this case, this person still has autism, but is able to adapt to his/her environment--thus he/she does not require active support.
The person with multiple sclerosis is not always symptomatic--or could adjust to the symptoms enough to maintain employment. This person still has MS, though.
There are many jobs that only allow short bathroom breaks. Simply being able to take the break to recover may be considered support. The autistic person in this scenario is doing something that neurotypical people don't do in order to compensate for the challenges of autistic neurology. This behavior and the employer's tolerance of it is "Support."
It may be that different diagnosticians will interpret this differently, but I think a case can be easily made out of most of our lives that supports of these kinds are in effect and needed, even if we had to work them out without understanding them as such.
My wife and extended family help me to compensate for things I "should be able to do" if I was typical. These actions constitute support. Without them I would be unemployed and homeless, despite my very strong abilities in my job.
I discussed this question with my diagnosing psychiatrist, wondering if the ways that I relied on help from others would be considered support and he said yes. I think people need to take a more expansive view of what this means: supports are compensatory actions and systems, specifically, methods of overcoming challenges posed by your neurology. From what I have read here, most of the older autistic people who have managed some success have these systems and processes in place.
24 Nov 2014, 10:21 am
ASPartOfMe wrote:
Jono wrote:
Adamantium wrote:
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.
What distinguishes Asperger type autism from Kanner type autism in the new criteria then? The way I understood it was that Asperger type autism was synonymous with high functioning autism in the new DSM and presumably, I thought that would mean requiring less support than classical type autism.
There is nothing in the DSM 5 that has anything to do with Kanner's or Aspergers
or High Functioning. It's all Autism Spectrum Disorder and the three levels. Aspergers is a former official diagnosis now a colloquial term Kanner's Autism/Classic Autism, High Functioning Autism, always have been colloquial terms.
As far as the widely disbelieved (at least around here) employment survey it was for autistic s in general not aspies in particular. A survey that was just about adult aspies who were diagnosed as adults showed "66% of participants with Asperger's reported suicidal ideation, compared with only 17% of the general population and 59% of patients with psychosis" "35% had planned or attempted suicide during their lifetime". http://www.medicalnewstoday.com/articles/278678.php. Depression is the largest factor with suicide ideation. That is the reality of our "mild" condition. So yes positive feelings are of huge importance yet a lot of what you read here is that most are probably not Autistic at all because they were over-diagnosed, we identify that way because we don't want to be associated with lower functioning, or we want to be hip like Sheldon. So it was downright cruel for the DSM 5 to eliminate what was a helpful diagnosis because because it did produce very positive feelings.
Agreed, there is no distinction between Aspergers and Kanner types in the new system, despite the reports by many clinicians there there are clusters of symptoms that made those distinctions meaningful and useful to them... But on the severity side, there are many people who would be considered HFA or Aspergers who clearly fit level 2 severity in the new system, despite a tendency to focus on successful people at the higher end. The psychological reasons for this bias toward the positive are quite clear, as is the backlash against that distorted view from people with more severe issues and their carers. It was always true that there were people with aspergers who were much more severely challenged in functional areas than the stereotype of aspergers suggested. The Aspergers diagnosis covered a functional spectrum. too. The key differentiator for Aspergers was the absence of language delay. That doesn't preclude a range of severity levels in the communication criterion.
24 Nov 2014, 10:49 am
I think part of the problem when we are talking about level 1 - mild ASD or what is still called some places Asperger's Syndrome is, "How does one define 'requires support'?"
If for example one takes a Selective Serotonin Reuptake Inhibitor and sees some kind of shrink occasionally, has been diagnosed by a professional - but has lived independently and held down a job - but deals with a certain amount of anxiety and social isolation - Does that qualify as - "Requiring support"?
If someone fills every criteria stated for level 1 - Mild ASD - but through much effort achieved a point where they no longer require support - are then then cured of ASD?
I guess the term "requires support" allows a lot of room for definition.
_________________
"Everyone is a genius. But if you judge a fish by its ability to climb a tree it will live its whole life believing that it is stupid."
- Albert Einstein
