what are your thoughts on the "high functioning", etc labels

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colliegrace
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19 Jun 2023, 9:18 pm

I know that many adult autistics dislike the terms "high functioning, "low functioning", etc.... heck, even some of the FB groups that were recommended to me has rules against not only those but also the levels 1, 2, 3 terminology, or even saying "severe" or "mild".

Which I find kinda..... redundant? Dumb?

I actually don't even have much problem with the terms "high", "low" functioning, except that they don't really capture the complexity of the spectrum. (Neither does the levels thing, but it does a better job describing support needs.)


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20 Jun 2023, 1:48 am

I don't really care for them


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20 Jun 2023, 4:12 am

There are people on the spectrum who are low-functioning and there are others who are high-functioning, but not every individual on the spectrum are one or the other. But that doesn't mean functioning levels don't exist.

Functioning levels don't have a precise set of symptoms. It's not like high-functioning are supposed to have A, B and C and low-functioning are supposed to have D, E and F.

But if a person had no speech development delays as a child and has always been verbal and generally seems less obvious, then they probably will be described as high-functioning or Asperger's.

Most autistic people fall somewhere in the middle, where they have both high-functioning and low-functioning tendencies. Some are mostly high-functioning in every area, like myself, while others are low-functioning in every area, like if they're always non-verbal and require more care.

I hope this makes sense.


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20 Jun 2023, 1:56 pm

The problem is there has to be a way, a common term understood by all including everyday NT`s to distinguish between someone who is extremely disabled, i.e has to spend the rest of his life in a residential home, cant talk, has an IQ of about 50 and someone like actor Anthony Hopkins, who claims he`s autistic.

Low / High functioning is the most appropriate way of doing this despite the problems of those that don't fit neatly into one of these categories


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20 Jun 2023, 2:23 pm

I personally don't mind them. And as a matter of fact, being labelled "high functioning" has helped me to avoid some of the stigma of being autistic on several occasions where I've been outed by family members.


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20 Jun 2023, 2:44 pm

The term "high functioning autism" was originally used as diagnosis label to refer to an autistic person with an IQ above 70 (source: Paul Micaleff of the Aspergers From The Inside Youtube channel). So originally the bar for high functioning was pretty low.

I recognize that I do better in life than most people with autism, but that is a function of other blessings I have received and not because I don't struggle with autism in everyday life.



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20 Jun 2023, 4:10 pm

I'm not a fan. It can be very inconsistent even with the same person depending on the situation. Somebody can be perfectly fine in many situations, but completely incapable of coping with certain things.



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20 Jun 2023, 6:23 pm

If I go further than the easy way out; labels of
how NTs could easily comprehend and distinguish degrees of severity.

And if I go further than the protests as how it ignores the needs of those who has 'high functioning' label, and ignores the assets of those who has 'low functioning' labels... Or heck 'middle functioning'.


Perhaps it reflects more about the current awareness and comprehension levels around the concept of functioning and disability.
And the generalizing biases in the human mind.

People can comprehend an autistic is either have intellectual disability and very dependent OR is a genius and very independent.

But how much can people grasp that there exists geniuses who are also dependent? Or those with intellectual disability who can live independently?

Or if the axis of intelligence and functioning along with accomplishments is irrelevant?
Or if situations and that the axis itself moves and is inconsistent on a regular basis?

How about the notion of pressuming competence and incompetence? I think this lies the current dilemma -- in which assumes outcomes and behaviors. Nevermind in between, nevermind processes. Nevermind the notion of fairness and the unpredictable blurry middle.

People still assumes if one can/cannot do X, they assume one also can/cannot do Y, Z, etc.
Where does one draw the line? Who follows and exempts to the rule?


How about pressuming prerequisites?
Like how one can go point A to B, with or without X with self determination, specific conditional states or whatever workarounds.

Yet without/with X is still significant; like how with or without it, it changes a person's way of navigating life, and other people won't able to relate, comprehend or ever think about it.

X could be a trait, a situation, regardless in born or acquired -- it is as long as it affects how a person interacts, navigates and experience through life.

Having or not having X may require Y or Z in C or D situations respectively.
Y or Z could just be something solid like an equipment and being rich enough to acquire, or something very intangible like a habit and in born temperament, or even the environment and society itself and how their culture works.


But seriously...
The direction I want people to go is beyond those functioning level labels.
In my option it's barely there. And I'm not patient.

So I'm coming up on my own in this post, maybe give some people an idea or so, then let others run away with it. Could care less who takes the credit.


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CockneyRebel
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22 Jun 2023, 12:29 am

I don't care for such labels.


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bee33
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23 Jun 2023, 4:08 am

I think it's good to have descriptive terms, especially for something like ASD which is already hard to explain to people who are not familiar with it.

But I'm not sure high functioning and low functioning are necessarily the best way to describe someone's level of difficulty in managing their life. You can be really struggling but still able to function in a practical sense, it just takes a lot of effort, more effort than someone might imagine when they hear "high functioning." Or you can be a highly capable and intelligent person with a professional job but still can't really function in basic areas of life, like interacting with other people, for instance. What does it mean to function? I don't think it's clear.

Hannah Gadsby said that because she is labeled as high functioning, that might lead people to think that she "functions highly," when in her own estimation she does not. Even though she is a successful entertainer, she still struggles with a great many things.

And doesn't the whole concept sound a bit judgmental?



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23 Jun 2023, 4:12 am

There are some people on the spectrum who are unable to mask or make the effort. They may be considered low-functioning.


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bee33
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23 Jun 2023, 5:23 am

Joe90 wrote:
There are some people on the spectrum who are unable to mask or make the effort. They may be considered low-functioning.
I agree that there are folks on the spectrum who have very severe difficulties. The term "low functioning" still sounds a little bit insulting somehow? I dunno, maybe I'm overthinking it.



Joe90
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23 Jun 2023, 6:05 am

bee33 wrote:
Joe90 wrote:
There are some people on the spectrum who are unable to mask or make the effort. They may be considered low-functioning.
I agree that there are folks on the spectrum who have very severe difficulties. The term "low functioning" still sounds a little bit insulting somehow? I dunno, maybe I'm overthinking it.


You could use the words "severe", "moderate" and "mild".


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23 Jun 2023, 8:04 am

Whether people like it or not, support levels are listed in the diagnostic criteria and they exist legally.
I don't believe they're called functioning levels.


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23 Jun 2023, 8:34 am

^ This. They are referred to as severity levels in the DSM 5

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23 Jun 2023, 8:51 am

"So-called mild Autism doesn't mean that the Autistic person experiences autism mildly. It means you experience their Autism mildly."