What do you think about functioning labels?

[louloulovesdogs]

So I identify as autistic but I also consider myself very high functioning. There are both good and bad things that come with that. But it seems that many people are very against functioning labels. I heard someone say that nobody is less autistic or more autistic or higher functioning or lower functioning and I just personally disagree with this. Like my autism does not effect me to the same level as say this kid i know who couldn't put a seatbelt on for 4 hours because the sensory overload was too much. And while a lot of things I learned to manage/mask, certain things never effected me to a great degree even though they were there. I understand that there can be a kind of negative hierarchy of people feeling like high functioning is better, and kind of hating on people with cognitive or language impairment and obviously I disagree with making anyone feel lesser or better, but I do feel like my experience of autism is very different having no language delays and above average intelligence than someone that is non verbal or cognitive impairments.

I want to know people's views on this, why are some people so against functioning labels, and what would be a better alternative? Since the spectrum is so wide it's hard to relate to the whole thing I think.....

 

[Gracey]

I'm still getting to grips with the terminology used for all things Autism.

High functioning, low functioning are only two descriptions to cover the whole spectrum. A bit like describing something as black or white. It's one or the other with no grey areas.

I could understand the reasoning to lose the high functioning/low functioning descriptions.
I wouldn't have the first clue at the moment about alternatives or the most up-to-date thinking on the subject, sorry
I would certainly be interested in learning more though.

 

[Judge]

"High-functioning" strikes me as a benchmark of sorts relative to how one successfully or not negotiates existing in the NT world. Without any consideration of the emotional or physical cost involved.

A term likely created by Neurotypicals relative to their world- and not ours.

 

[vangelis]

In this situation I think the labels only help the analysts not the person concerned. I don't know a lot about it but have read various accounts of people not even being classed as autistic if they have a steady job and/or relationship - this makes no sense to me whatsoever and shows that despite the advances in understanding the condition there still seems to be a long way to go.

 

[louloulovesdogs]

I'm still getting to grips with the terminology used for all things Autism.

High functioning, low functioning are only two descriptions to cover the whole spectrum. A bit like describing something as black or white. It's one or the other with no grey areas.

I could understand the reasoning to lose the high functioning/low functioning descriptions.
I wouldn't have the first clue at the moment about alternatives or the most up-to-date thinking on the subject, sorry
I would certainly be interested in learning more though.

I definitely agree with that, but i feel like we need more terms not no terms. Idk I like to identify as something specific.

 

[hutchie]

I went to a conference recently, a speaker spoke about high/low functioning, he said whose to say, he's both, depending on task and time of day, which totally makes sense to me, I've hated the two labels as to me they're kind of insulting.

 

[louloulovesdogs]

"High-functioning" strikes me as a benchmark of sorts relative to how one successfully or not negotiates existing in the NT world. Without any consideration of the emotional or physical cost involved.

A term likely created by Neurotypicals relative to their world- and not ours.

I agree with that too, that's why I said there are good and bad things about it. But I feel like the difference who can do that as "pass" and who can't. Not that that's a good or bad thing, but that's kind of how I view it. Some people, no matter how hard they tried, could not "pass" as NT, others have to try very very hard and can, others have to try a bit but not extremely hard and can. others it totally depends on the day.

 

[Judge]

I definitely agree with that, but i feel like we need more terms not no terms. Idk I like to identify as something specific.

Frankly at the moment, I have the impression that specificity scares the hell out of the professional medical community. That they are more comfortable in medical ambiguity. Because they really don't have many of the answers we really need.

Meanwhile politicians and insurers want to stratify such methodologies for the purpose of dismissing government entitlements rather than providing them given the fiscal impact. In that context it's more pragmatic to carry on as if children outgrow their autism rather than admit that autistic children inevitably become autistic adults.

To say this all concerns me is an understatement at best.

 

[Streetwise]

So I identify as autistic but I also consider myself very high functioning. There are both good and bad things that come with that. But it seems that many people are very against functioning labels. I heard someone say that nobody is less autistic or more autistic or higher functioning or lower functioning and I just personally disagree with this. Like my autism does not effect me to the same level as say this kid i know who couldn't put a seatbelt on for 4 hours because the sensory overload was too much. And while a lot of things I learned to manage/mask, certain things never effected me to a great degree even though they were there. I understand that there can be a kind of negative hierarchy of people feeling like high functioning is better, and kind of hating on people with cognitive or language impairment and obviously I disagree with making anyone feel lesser or better, but I do feel like my experience of autism is very different having no language delays and above average intelligence than someone that is non verbal or cognitive impairments.

I want to know people's views on this, why are some people so against functioning labels, and what would be a better alternative? Since the spectrum is so wide it's hard to relate to the whole thing I think.....

to me its giving into manipulation, i knew someone nonverbal and they were more intelligent than me how do you have the right to say someone non verbal is cognitively impaired they may choose not to speak speech is overated

 

[Streetwise]

the spectrum was devised i bet by neurotypicals who want control over what they fear
i dont want to be a slave of neuro typicals, so why should i agree with a label- im me, im not a clone of another person who is labeled autism or PDD
i bow to no human

So I identify as autistic but I also consider myself very high functioning. There are both good and bad things that come with that. But it seems that many people are very against functioning labels. I heard someone say that nobody is less autistic or more autistic or higher functioning or lower functioning and I just personally disagree with this. Like my autism does not effect me to the same level as say this kid i know who couldn't put a seatbelt on for 4 hours because the sensory overload was too much. And while a lot of things I learned to manage/mask, certain things never effected me to a great degree even though they were there. I understand that there can be a kind of negative hierarchy of people feeling like high functioning is better, and kind of hating on people with cognitive or language impairment and obviously I disagree with making anyone feel lesser or better, but I do feel like my experience of autism is very different having no language delays and above average intelligence than someone that is non verbal or cognitive impairments.

I want to know people's views on this, why are some people so against functioning labels, and what would be a better alternative? Since the spectrum is so wide it's hard to relate to the whole thing I think.....

 

[louloulovesdogs]

to me its giving into manipulation, i knew someone nonverbal and they were more intelligent than me how do you have the right to say someone non verbal is cognitively impaired they may choose not to speak speech is overated

Well people who are language impaired aren't necessarily cognitively impaired, that's why they're separate categories. plus a lot of people are selectively mute. So nobody has addressed what about other options. Like, some people don't want a label, but you already have one, autistic, so I mean if people want a more specific label, like I do, whats a better option?

 

[the_tortoise]

I want to know people's views on this, why are some people so against functioning labels, and what would be a better alternative?

I don't like functioning labels because I think they are too simplistic to describe something as complex and diverse as the functioning of individual human beings....

Even the word "functioning" means absolutely nothing without a context, and within any context "high functioning" and "low functioning" mean virtually nothing without a clear and agreed-upon definition of how "functioning" is being measured and the boundaries between "high" and "low" (and "moderate", if that's included)......the only thing that seems clear to me about functioning labels is that nobody agrees on what high and low functioning actually means in an objective/concrete sense except researchers who use an official definition referring only to IQ score (and even those researchers may disagree about the predictive value of IQ score in any particular context).

Setting the IQ definition aside (sort of....this also relates to how people extrapolate things from IQ scores, which ties in to how poeple may expect all abilities or at least certain groups of them to be equally developed in a person.....or may expect that cabilities can only ever develop in anyone in a particular sequence like a -> b --> c --> d such that if someone doesn't have ability a it is, often mistakenly, presumed that same person cannot possibly possess ability d...).....

I have discovered over the years that I am one person's idea of low functioning and another person's idea of high functioning....typically it's one or the other. The actual traits and abilities I have remain constant, it's just that the context and the definitions being used vary from person to person.

The issues with devaluing people who have more difficulties....I don't like it but that's got a life of its own and is sort of a separate issue for me. I would still dislike functioning labels even that were not the case.

I think a better alternative would be for people to either create a more detailed measure of functioning that looks at multiple contexts and concrete actions and utilizes a discrete unit of measurement that is directly and explicitly tied to something in real life (not like in the DSM V where it's just words like "a lot" vs "a little" with only a few examples meant as guidelines -- my "a lot" may be your "a little"....one hopes that clinicians might have enough experience with a broad enough population of patients to apply those words in a way that makes sense not only to them but also to a healthy majority of their colleagues but, given the huge inconsistency in how diagnostic labels for ASDs have been applied over the years and how much they argue with each other about how to interpret all the labels and classifications, I would not bet money on it) -- better yet -- to just accept that you cannot paint an accurate picture of any person's abilities without getting into at least a tiny bit of detail and providing at least a tiny bit of contex -- like you did with your seatbelt example, and talking about your lack of language impairment.

 

[the_tortoise]

Like, some people don't want a label, but you already have one, autistic, so I mean if people want a more specific label, like I do, whats a better option?

The only other option I have ever been able to think of (that I haven't already rambled on about, until/unless scientific knowledge advances to the point where we discover distinct physical causes that have a very narrow range of outcomes in terms of a person's functioning/abilities) is to just have a variety of labels for the specific symptoms or difficulties you have, rather than a larger syndrome-type label that attempts to group them altogether.

Myself personally, though, I would be happiest with a less specific label -- one that was vague enough to make it obvious you had to ask questions, vague enough to make it obvious that there was huge, huge variation in people with the label....like, "neurodevelopmental disorder". I think it would be awesome if that was the official label for all the neurodevelopmental conditions.....or at least for those that don't have a known cause and can't be diagnosed using physical tests.

 

[Warmheart]

Functioning labels are illogical.
How any person functions is contextual. Are you a good parent? A good reader? How good are you as a skateboarder? As a white-water rafter? What if you couldn't have any coffee this morning, how would you be then? What if you have the flu? So, how anyone functions is based on context.

Functioning labels are depersonalizing, dismissive.
Yes, there are people needing 24/7 care. Stephen Hawking is one of them. But, one would never call him "low functioning," as he can hear you, and he'd likely use his communication device to make you acutely aware of his personhood. Even when Autistics can't speak, we can hear, think, and communicate (in some way) our response to someone hanging such a dismissive label on us.

Functioning labels either limit expectations ("low functioning") or set one up for missing out on needed supports ("high functioning.").

Functioning labels are ableist. Autistics didn't come up with a label designed to indicate how easily someone can or cannot pass for neurotypical. Autism is a beautiful neurotype in it's own right. We are not broken neurotypicals, we are whole Autistics.

Functioning labels originated in the same dark ages which gave us both the damaging normalizing "therapies" (often resulting in internalized ableism and C-PTSD,) and the outrageously presumptive term "mental age."

What term can we use, if not functioning labels?
Try "Has high support needs." (....in general, or in a specific context.)
We need to ditch the stigma of needing supports.

Currently, the ASD Levels 1, 2, and 3 are used to give a hint of where someone is on the spectrum.
Autism is not a linear spectrum anyway, more of a 3-D spectrum, or a sundae bar.
In North America, a Supports Intensity Scale is often filled out by the Department of Developmental Services, even before someone gets help from an autism agency. Supports Intensity Scale avoids broad-brush functioning labels, and customizes degree of supports.
Customizing supports is critical because functioning labels miss the mark.

Degree of autism severity actually has nothing to do with "functioning level."
You can have someone with no speech, poor self-care skills, needing much academic support ("low functioning") who only has mild autism-- rather flexible thinking, milder sensory sensitivities, and is more comfortable relating to people.........
And you can have someone with excellent speech, good self-care skills, academically needing few supports ("high functioning"), who has severe autism-- very rigid, inflexible thinking, significant social challenges, strong sensory sensitivities, frequently drifting attention, who melts down over every little snag.

Socially, within the autism community, there is no better-than-you hierarchy of diagnosis. Most today know IQ scores for autistics aren't likely to be reliable or valid, due to the nature of the testing, and our challenges with communication--both expressive as well as receptive, delayed processing, challenges with attention/focus, etc. Unstandardized minds often don't shine in standardized tests. While some autistics have a degree of intellectual impairment, standard intelligence is a poor measure of worth of a person.

Personally, I think it's time to retire functioning labels.

 

[Chance]

So I identify as autistic but I also consider myself very high functioning. There are both good and bad things that come with that. But it seems that many people are very against functioning labels. I heard someone say that nobody is less autistic or more autistic or higher functioning or lower functioning and I just personally disagree with this. Like my autism does not effect me to the same level as say this kid i know who couldn't put a seatbelt on for 4 hours because the sensory overload was too much. And while a lot of things I learned to manage/mask, certain things never effected me to a great degree even though they were there. I understand that there can be a kind of negative hierarchy of people feeling like high functioning is better, and kind of hating on people with cognitive or language impairment and obviously I disagree with making anyone feel lesser or better, but I do feel like my experience of autism is very different having no language delays and above average intelligence than someone that is non verbal or cognitive impairments.

I want to know people's views on this, why are some people so against functioning labels, and what would be a better alternative? Since the spectrum is so wide it's hard to relate to the whole thing I think.....

It is in some way understandable I guess for people to want definition on a very broad subject, maybe until your not labeled the way you were hoping... I was basically forced diagnosed. I was thinking HFA/Aspergers, or just PTSD, something not too bad... But that wasn't the case I was just lumped in to ASD toilet with a host of other disorders that only made me feel more stupid and basically worthless. These are now marks against me in my medical records, and later it may affect my insurance, for now it hasn't. Luckily it didn't affect my job... I am very appreciative of that.

I'm one of those who cant deal with the seat belt, I just got a ticket for it actually. I have Tourettes that affects my speech pretty bad when I get tired, plus I didn't talk much as a kid, don't talk much now... The mask thing... I cant pull that off very long at all anymore... but because I had really high IQ scores it made me not eligible for any benefits (which is fine, I wasn't seeking anything from anyone anyway).

So that "label" was more like a knife in my back than any form of help. Sure it explained a lot, but did it help me in any form whatsoever? No... Will a new label help me? Probably not, because I have mild OCD, mild Tourettes, PTSD, ADD, SPD, Panic Disorder, and that wonderful noose called depression... Wow I would actually hate to see what they might come up with for that label... I guess I'm not a "label" guy because I'm one of the ones it sucks for. Sorry to be on the other side, not trying to be a moron... : )

 

[Full Steam]

Functioning labels are illogical.
How any person functions is contextual. Are you a good parent? A good reader? How good are you as a skateboarder? As a white-water rafter? What if you couldn't have any coffee this morning, how would you be then? What if you have the flu? So, how anyone functions is based on context.

Functioning labels are depersonalizing, dismissive.
Yes, there are people needing 24/7 care. Stephen Hawking is one of them. But, one would never call him "low functioning," as he can hear you, and he'd likely use his communication device to make you acutely aware of his personhood. Even when Autistics can't speak, we can hear, think, and communicate (in some way) our response to someone hanging such a dismissive label on us.

Functioning labels either limit expectations ("low functioning") or set one up for missing out on needed supports ("high functioning.").

Functioning labels are ableist. Autistics didn't cone up with a label designed to indicate how easily someone can or cannot pass for neurotypical. Autism is a beautiful neurotype in it's own right. We are not broken neurotypicals, we are whole Autistics.

Functioning labels originated in the same dark ages which gave us both the damaging normalizing "therapies" (often resulting in internalized ableism and C-PTSD,) and the outrageously presumptive term "mental age."

What term can we use, if not functioning labels?
Try "Has high support needs." (....in general, or in a specific context.)
We need to ditch the stigma of needing supports.

Currently, the ASD Levels 1, 2, and 3 are used to give a hint of where someone is on the spectrum.
Autism is not a linear spectrum anyway, more of a 3-D spectrum, or a sundae bar.
In North America, a Supports Intensity Scale is often filled out by the Department of Developmental Services, even before someone gets help from an autism agency. Supports Intensity Scale avoids broad-brush functioning labels, and customizes degree of supports.
Customizing supports is critical because functioning labels miss the mark.

Degree of autism severity actually has nothing to do with "functioning level."
You can have someone with no speech, poor self-care skills, needing much academic support ("low functioning") who only has mild autism-- rather flexible thinking, milder sensory sensitivities, and is more comfortable relating to people.........
And you can have someone with excellent speech, good self-care skills, academically needing few supports ("high functioning"), who has severe autism-- very rigid, inflexible thinking, significant social challenges, strong sensory sensitivities, frequently drifting attention, who melts down over every little snag.

Socially, within the autism community, there is no better-than-you hierarchy of diagnosis. Most today know IQ scores for autistics aren't likely to be reliable or valid, due to the nature of the testing, and our challenges with communication--both expressive as well as receptive, delayed processing, challenges with attention/focus, etc. Unstandardized minds often don't shine in standardized tests. While some autistics have a degree of intellectual impairment, standard intelligence is a poor measure of worth of a person.

Personally, I think it's time to retire functioning labels.

That's the best write up I've read on the subject.

Case closed

 

[Southern Discomfort]

I don't really care about functioning labels. Although I will say this, where are the people in the middle? It's supposed to be a spectrum, where's the middle?

 

[Judge]

I don't really care about functioning labels. Although I will say this, where are the people in the middle? It's supposed to be a spectrum, where's the middle?

To me, the spectrum of autism reflects a continuum. Not something based exclusively on quantifiable, linear progression.

Where the beginning of the spectrum has few traits and behaviors of lesser amplitude as opposed to the end which has massive traits and behaviors at intense levels of amplitude. With everything else being far more nebulous in both description and varying amplitudes.

Which makes terms like "high functioning" seem pointless whether they have pronounced traits and behaviors or not. That where one is on such a spectrum may or may not truly relate to their ability to navigate the NT world.

Make any sense?

 

[wight]

The very definition of the word "function" (and thus "functioning") is inappropriate to use in relation to a human being.

Dictionary.com:
Function (noun)
1. the kind of action or activity proper to a person, thing, or institution;the purpose for which something is designed or exists; role

People are not designed nor exist for a "proper activity" or "purpose" and it is dehumanizing and demeaning to refer to people in such a manner. Frankly, it raises the same sort of moral outrage I feel about sexism and racism and makes me feel like a person using them (especially in a professional context like psychology) deserves a hard slap in the face.

That's what I think of the "functioning labels"

 

[Streetwise]

would anyone say they are heart disease no because people dont like labels

To me, the spectrum of autism reflects a continuum. Not something based exclusively on quantifiable, linear progression.

Where the beginning of the spectrum has few traits and behaviors of lesser amplitude as opposed to the end which has massive traits and behaviors at intense levels of amplitude. With everything else being far more nebulous in both description and varying amplitudes.

Which makes terms like "high functioning" seem pointless whether they have pronounced traits and behaviors or not. That where one is on such a spectrum may or may not truly relate to their ability to navigate the NT world.

Make any sense?