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StarTrekker
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03 Feb 2019, 3:29 pm

How do you feel about the "functioning levels" of the DSM 5 autism diagnosis? The level 1 (requiring support), level 2 (requiring substantial support) and level 3 (requiring very substantial support)? I'm curious because I was diagnosed as level 1 almost five years ago, but in a couple of months I'm going in to be reassessed, because I feel that level 2 is a better fit for me based on the intensity of the supports I need.

I am not a fan of the generic functioning labels; "high functioning" and "low functioning" because I feel they're too restrictive and don't show the full spectrum of strengths and weaknesses an individual with autism can have, but I do like the levels, because they describe the intensity of supports needed, rather than focusing on the severity of the symptoms of a person directly. What do you all think?


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livingwithautism
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03 Feb 2019, 4:54 pm

I’m level 2 for social communication and level 2 for RRB’s. Before DSM-5 I was diagnosed with Autistic Disorder.



Arganger
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03 Feb 2019, 5:18 pm

I feel any three level system like that forgets a lot of people.
Some of my areas of autism would look level 2
Others level 1.

Some days are better than others and it can very significantly. For instance, I've been heading into a shutdown unfortunately lately, so I am having significant difficulty with very basic things, and leaving the house has been a huge risk. My speech is going even at home, and it isn't hard at all for me to go over my limit and when I do recovery can take a while, it makes me feel like a turtle.

simply making it five levels would help somewhat, but would be best would be to break it up into individual areas.


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Suspected; PTSD (Treated, as my counselor did notice), possible PCOS, PMDD, Learning disabilities (Sure of it, unknown what they are), possibly something wrong with immune system (Sick about as much as I'm not) Possible EDS- hyper mobility type (Will be getting tested, suggested by doctor) dysautonomia


StarTrekker
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03 Feb 2019, 5:30 pm

Arganger wrote:
I feel any three level system like that forgets a lot of people.
Some of my areas of autism would look level 2
Others level 1.

Some days are better than others and it can very significantly. For instance, I've been heading into a shutdown unfortunately lately, so I am having significant difficulty with very basic things, and leaving the house has been a huge risk. My speech is going even at home, and it isn't hard at all for me to go over my limit and when I do recovery can take a while, it makes me feel like a turtle.

simply making it five levels would help somewhat, but would be best would be to break it up into individual areas.


Yeah, that would definitely make things clearer. I have the same problem. I was able to call and schedule an appointment with my eye doctor with zero problem, but I almost had a meltdown and had to leave while standing in line at the grocery store because I couldn't deal with the noise, light and people. Different specific traits have different severities.


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AceofPens
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04 Feb 2019, 9:09 am

I like the present system. I'm diagnosed level 1, and I think that's an accurate assessment of my abilities and potential, at least as far as autism goes. Right now I'm closer to a 2 in practice (I can't shop, drive, or handle more complicated interactions like making appointments on my own), but much of that is likely due to comorbid conditions. So even though I have the impairments of someone with level 2 autism, ASD might not be solely to blame. I think that the best way to handle complicated examples like us (who are unevenly impaired) is to give a more elaborate description of our disability. You might tell someone that you have Level 1 autism with severe sensory dysfunction, for example. In my case, I tell them that I have autism with NVLD, which probably covers all of my impairments and their severity.


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DanielW
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06 Feb 2019, 2:58 pm

I can't speak for anyone else, but from my own experience I can be a level 1, or a level 2 depending on a lot of different variables. I also think the current system is too subjective...and I can't say I've been very fond of labels on people, clothing or mattresses.



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06 Feb 2019, 3:24 pm

I think there ought to be a level zero for someone who is obviously autistic, but isn't disabled.

A hypothetical example would be a romance novelist who can sit down and write the entire novel in one sitting.
She makes so much money that she has a personal assistant, chosen by the publisher, to assist her with her Activities of Daily Life. And her mother handles her finances.

The novels aren't great works of art, but they ensure a steady cash flow for all involved.



lostonearth35
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06 Feb 2019, 3:49 pm

They really annoy me for some reason. They sound like levels you get when you advance through an RPG video game, except it's in reverse since higher lever characters are supposed to be stronger, smarter, more charismatic and so on. Autism levels sound like, to me, that you are less that way the higher your level is.

I guess I must be level 0 because only "low functioning" autistic people have legitimate problems, and if I or anyone else who is "high functioning" has problems, it's our own fault or we think we're snowflakes. :roll:



Joe90
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06 Feb 2019, 4:43 pm

I'm not saying everybody on the spectrum are either high-functioning or low-functioning, but I do believe that among the range of spectrum disorders and complexity, there are high-functioning and low-functioning people too. I'm definitely at the high-functioning end of the spectrum, personally speaking. Remember, it is a spectrum, and spectrums aren't black and white.


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naturalplastic
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06 Feb 2019, 5:07 pm

BTDT wrote:
I think there ought to be a level zero for someone who is obviously autistic, but isn't disabled.

A hypothetical example would be a romance novelist who can sit down and write the entire novel in one sitting.
She makes so much money that she has a personal assistant, chosen by the publisher, to assist her with her Activities of Daily Life. And her mother handles her finances.

The novels aren't great works of art, but they ensure a steady cash flow for all involved.


This example doesn't make any sense at all.

This hypothetical person is basically an idiot savant who has an extreme aptitude for one thing (writing these novels), but still needs support (from mom, from the publisher). The fact that they need support shows they are still rather obviously disabled.



kraftiekortie
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06 Feb 2019, 6:46 pm

The functioning level of autistic people vary GREATLY.

You can have an autistic person in a wheelchair, unable to walk, speak, go to the bathroom. The person has to wear a helmet so they don't bash themselves in the head.

You can have an autistic person who is able to understand quantum theory, and create new theories based on the original quantum theory.

Both are autistic. Their functioning varies greatly.



littlebee
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07 Feb 2019, 5:20 am

Kraftiekortie wrote:

kraftiekortie wrote:
The functioning level of autistic people vary GREATLY.

You can have an autistic person in a wheelchair, unable to walk, speak, go to the bathroom. The person has to wear a helmet so they don't bash themselves in the head.

You can have an autistic person who is able to understand quantum theory, and create new theories based on the original quantum theory.

Both are autistic. Their functioning varies greatly.


Great message, Kraftiekortie, but I do not understand how what was previously classified as aspergers necessarily fits into the three levels.of autism. Something is off about it. In the past I attended a lot of events with people diagnosed as aspergers and a lot of them, most of them did not fit into these three categories but they/we were high functioning and self-supporting, generally speaking, though a lot of us having difficulty did not fit into these three levels. Some people had a job (miraculously or luckily fell into the right situation, once) and then could not get another job due in some part to conditions in general but in some part due to difficulty adjusting socially which could affect the ability to get a job. Then such a person could start going downhill. That could be a natural outcome. For me, when I am very stressed, both internally and/or externally or both, noise and light are more disturbing. My tolerance level is much lower.

To the op, thanks for making this thread. I think it is important. Are the different categories mainly an assessment for the purpose of getting financial aid of some kind? Am not sure, but I can think of no other reason for making these kinds of categories.



Dear_one
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07 Feb 2019, 9:12 am

kraftiekortie wrote:
The functioning level of autistic people vary GREATLY.

You can have an autistic person in a wheelchair, unable to walk, speak, go to the bathroom. The person has to wear a helmet so they don't bash themselves in the head.

You can have an autistic person who is able to understand quantum theory, and create new theories based on the original quantum theory.

Both are autistic. Their functioning varies greatly.


They can also be the same person, with a keyboard.

Bureaucracies (as currently understood, pre-computer) can't function without making categories. However, these are always Procrustean to some extent. The first expansion I'd suggest would be sub-classification on what things someone needs help with. Someone might need just a tiny amount of help, too little to show up in the budget, but critical to all else.

I would be classed as not needing help, because I have lived alone for years, etc. So, I'm not a problem to the system. However, I do need help to deal with the health care system, so I just "fall through the cracks" and vanish from the stats. I would have been much more of an asset to society if I'd had regular help in communication on the business side. Do I "need" help? No. Would it have been a good investment? Yes.

The other side of this is what can we do? Can we be organized to help each other? My town had a couple of retired nuns rooming together. One couldn't hear, and the other couldn't remember, but they did fine together.



kraftiekortie
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07 Feb 2019, 11:55 am

I was just giving examples. There is much which is between. the extremes of functioning which I mentioned.

I'm not very good at quantum theory. But I'm not stuck in a wheelchair and wearing a helmet, either.



littlebee
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07 Feb 2019, 12:56 pm

Dear_one:

Dear_one wrote:
kraftiekortie wrote:
The functioning level of autistic people vary GREATLY.

You can have an autistic person in a wheelchair, unable to walk, speak, go to the bathroom. The person has to wear a helmet so they don't bash themselves in the head.

You can have an autistic person who is able to understand quantum theory, and create new theories based on the original quantum theory.

Both are autistic. Their functioning varies greatly.


They can also be the same person, with a keyboard.

Bureaucracies (as currently understood, pre-computer) can't function without making categories. However, these are always Procrustean to some extent. The first expansion I'd suggest would be sub-classification on what things someone needs help with. Someone might need just a tiny amount of help, too little to show up in the budget, but critical to all else.

I would be classed as not needing help, because I have lived alone for years, etc. So, I'm not a problem to the system. However, I do need help to deal with the health care system, so I just "fall through the cracks" and vanish from the stats. I would have been much more of an asset to society if I'd had regular help in communication on the business side. Do I "need" help? No. Would it have been a good investment? Yes.

The other side of this is what can we do? Can we be organized to help each other? My town had a couple of retired nuns rooming together. One couldn't hear, and the other couldn't remember, but they did fine together.


Wonderful message! I think there is so much material on this system that people tend to read quickly and kind of pass over stuff that is very relevant, and jumping around too much, though it is in some way stimulating, can decrease the attention span and weaken the focus. I like to stay with one interesting idea for a long time, mulling it over and kind of digging around in the earth of it for treasure. The reason I reply to this message now before making comments is that I suspect for most readers it will go in one ear and out the other, so want to put a marker here.