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carlos55
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24 Dec 2022, 5:08 pm

Interesting discussion

https://www.youtube.com/watch?v=PDhA0Y06h5E


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kitesandtrainsandcats
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24 Dec 2022, 5:25 pm

I'm not in the mood ofr a half hour video right now, but that bit in the description, Absolutely!,

Quote:
No one should have the power to censor language to exclude the observable realities of autism. Scientists and clinicians must be able to use any scientifically accurate terms necessary to describe the wide range of autistic people they study and support, without fear of censure or retribution."


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kitesandtrainsandcats
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24 Dec 2022, 5:29 pm

Ahh, text content is linked to in thje video's description block,

Quote:


That bit, yes, Yes, and Oh hell yes!

Quote:
McCoy et al. (2020) coined the term “partial representation” to describe situations in which one subset of a population claims to speak for an entire group without consulting all relevant stakeholders—the term “partial” reflects that such advocacy is necessarily both incomplete and biased (McCoy et al., 2020).


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carlos55
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30 Dec 2022, 8:01 am

Not sure where the idea came into being where the only way to be nice to people is to lie or whitewash their problems even if no one else believes it.

So pretending serious disabilities that everyone else recognizes as serious are not so serious by use of language.

I could pretend I can fly if no one else is convinced that’s true what’s the point I’m only lying to myself and where will that get me - nowhere


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Double Retired
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30 Dec 2022, 6:29 pm

Language is clearly a problem.

They are absolutely correct that language should not be used that minimizes or ignores serious problems experienced by severely Autistic individuals. But I also don't think it is appropriate to imply all Autistics are seriously disabled. If you've met one Autistic you've met one Autistic...terminology should not prejudge us.

I'm at the mild end of the Spectrum. I've muddled through life reasonably well...so well I did not discover I was Autistic until I was 64. But now that I know it I can look back and see the many ways Autism affected my life, and still does. And my bride and I now know what to look for and both agree I am Autistic. However, my bride and I did not diagnose me—I was diagnosed ASD-1 by a licensed psychologist who works with Autism and used ADOS.

I am Autistic but I am not disabled by it. It made some things more difficult for me. There are some things "normal" people do that I can't. It does make me "weird" (or "quirky", "strange", "odd", "annoying", etc...different terms have been applied). But I am not disabled—and I would feel silly trying to convince anyone I was.

The Spectrum is very broad. They should find terminology that either fits everyone on it or clarify which subset of the Spectrum they are talking about. People that need help shouldn't lose it due to language; but opportunities should not be denied because of language, either.


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Dengashinobi
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31 Dec 2022, 10:40 am

Double Retired wrote:
Language is clearly a problem.

They are absolutely correct that language should not be used that minimizes or ignores serious problems experienced by severely Autistic individuals. But I also don't think it is appropriate to imply all Autistics are seriously disabled. If you've met one Autistic you've met one Autistic...terminology should not prejudge us.

I'm at the mild end of the Spectrum. I've muddled through life reasonably well...so well I did not discover I was Autistic until I was 64. But now that I know it I can look back and see the many ways Autism affected my life, and still does. And my bride and I now know what to look for and both agree I am Autistic. However, my bride and I did not diagnose me—I was diagnosed ASD-1 by a licensed psychologist who works with Autism and used ADOS.

I am Autistic but I am not disabled by it. It made some things more difficult for me. There are some things "normal" people do that I can't. It does make me "weird" (or "quirky", "strange", "odd", "annoying", etc...different terms have been applied). But I am not disabled—and I would feel silly trying to convince anyone I was.

The Spectrum is very broad. They should find terminology that either fits everyone on it or clarify which subset of the Spectrum they are talking about. People that need help shouldn't lose it due to language; but opportunities should not be denied because of language, either.


It is a spectrum, and it has varying degrees of difficulties experienced by those who have it. Also the word disability can vary in the way it is percieved. A disabled person can be someone who cannot look after themselves or a person who has to do things a little differently in order to achieve the same goals
with normal or typical people. A high functioning autistic person and a low functioning one both experience a form of disability. But they are different disabilities in intensity and outcome.



Last edited by Dengashinobi on 31 Dec 2022, 12:51 pm, edited 1 time in total.

carlos55
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31 Dec 2022, 12:20 pm

Double Retired wrote:
Language is clearly a problem.

They are absolutely correct that language should not be used that minimizes or ignores serious problems experienced by severely Autistic individuals. But I also don't think it is appropriate to imply all Autistics are seriously disabled. If you've met one Autistic you've met one Autistic...terminology should not prejudge us.

I'm at the mild end of the Spectrum. I've muddled through life reasonably well...so well I did not discover I was Autistic until I was 64. But now that I know it I can look back and see the many ways Autism affected my life, and still does. And my bride and I now know what to look for and both agree I am Autistic. However, my bride and I did not diagnose me—I was diagnosed ASD-1 by a licensed psychologist who works with Autism and used ADOS.

I am Autistic but I am not disabled by it. It made some things more difficult for me. There are some things "normal" people do that I can't. It does make me "weird" (or "quirky", "strange", "odd", "annoying", etc...different terms have been applied). But I am not disabled—and I would feel silly trying to convince anyone I was.

The Spectrum is very broad. They should find terminology that either fits everyone on it or clarify which subset of the Spectrum they are talking about. People that need help shouldn't lose it due to language; but opportunities should not be denied because of language, either.


Autism as a word or diagnosis was invented in the 1940`s by men who had no idea what it was they were observing or what caused it.

So really autism was always a temporary umbrella label for unexplained brain conditions.

Since then maybe 20% of cases has been properly explained by various genetic disorders like Fragile X or 15q11.2 deletion and so on.

The other 80% is still waiting to be sub divided and a tiny % of those may be in the future considered natural differences for example if Elon Musk really does have a type of autism his type is not really a disadvantage more an advantage.

There are another small % after that probably a few more that give a lot more disadvantages than advantages but still allow the individual to have an independent life without anything resembling a disability.

However these are tiny percentages literally the tip of the autism iceberg bearing in mind in the future these things will probably likely have nothing in common biologically with most autisms.

These advocates would be better off supporting scientific research to sub divide the less disabling autisms so at least they can make their case with more credibility for their subtype.


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01 Jan 2023, 3:31 pm

With apologies... :roll:

Language and labels can be difficult.

As I mentioned, I am diagnosed as having an Autism Spectrum Disorder (abbreviated as "ASD"). While I can understand how it is clearly a "disorder" for folk with more severe symptoms I am not enthusiastic about saying that, for me, it is a "disorder". For me, I think of it as being more of a "difference"; but it does make me different from NTs and there are a lot of them and I guess they think being different from them is a disorder.

I think it would be great if they could come up with some other term not as judgemental as "disorder", though. Preferably a term broad enough to encompass mildly affected individuals, such as myself, and also severely affected individuals who are truly disabled. A term that doesn't prejudge the severity. (Though I accept that Autism Spectrum Difference probably doesn't sound clinical enough.)

Off Topic
Yesterday I had an idea. How about "Autism Spectrum Syndrome"?

But I quickly discarded that when I realized what the abbreviation would be.


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Dengashinobi
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05 Jan 2023, 4:34 am

Double Retired wrote:
With apologies... :roll:

Language and labels can be difficult.

As I mentioned, I am diagnosed as having an Autism Spectrum Disorder (abbreviated as "ASD"). While I can understand how it is clearly a "disorder" for folk with more severe symptoms I am not enthusiastic about saying that, for me, it is a "disorder". For me, I think of it as being more of a "difference"; but it does make me different from NTs and there are a lot of them and I guess they think being different from them is a disorder.

I think it would be great if they could come up with some other term not as judgemental as "disorder", though. Preferably a term broad enough to encompass mildly affected individuals, such as myself, and also severely affected individuals who are truly disabled. A term that doesn't prejudge the severity. (Though I accept that Autism Spectrum Difference probably doesn't sound clinical enough.)
Off Topic
Yesterday I had an idea. How about "Autism Spectrum Syndrome"?

But I quickly discarded that when I realized what the abbreviation would be.


Some days I feel like it is a mental illness, other days I feel even blessed that I am different and I think differently. On one hand it is often a disability, on the other hand it is simply being different. I know what you mean though, I often come accross academic work which uses persistently words like, mental illness and other words that feel a little overly dramatic for people with high functioning autism. Yet, I'm a bit reluctant at initiatives that try to controls language. It reminds me of the Orwellian newspeak and ministry of truth. Of how language controls our shared conception of a reality. In the case of autism I wouldn't like to detach it from the notion of disability, because it's fairly true even for people with mild symptoms, partly at least.



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05 Jan 2023, 12:03 pm

Dengashinobi wrote:
In the case of autism I wouldn't like to detach it from the notion of disability, because it's fairly true even for people with mild symptoms, partly at least.
Yes but...

My symptoms are mild but I will agree there are some things I am not good at. But, in IT terminology, it is a specific feature that is disabled, not everything.

There are many, many things that disable certain capabilities:
<=>- colorblindness
<=>- left handedness
<=>- shortness
<=>- tone deafness
<=>-+=:
But I would not want to automatically declare anyone with those differences to be "disabled".

Clearly some people with Autism are disabled. Some are not. I am Autistic, I am not disabled, my family has classified me as "weird", I think.


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carlos55
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05 Jan 2023, 1:09 pm

Double Retired wrote:
Dengashinobi wrote:
In the case of autism I wouldn't like to detach it from the notion of disability, because it's fairly true even for people with mild symptoms, partly at least.
Yes but...

My symptoms are mild but I will agree there are some things I am not good at. But, in IT terminology, it is a specific feature that is disabled, not everything.

There are many, many things that disable certain capabilities:
<=>- colorblindness
<=>- left handedness
<=>- shortness
<=>- tone deafness
<=>-+=:
But I would not want to automatically declare anyone with those differences to be "disabled".

Clearly some people with Autism are disabled. Some are not. I am Autistic, I am not disabled, my family has classified me as "weird", I think.


That's why advocates need to get behind medical research so they can be free of the autism label and promote their less disabling sub category.

About 20% of autism has been given its own category i.e fragile x or 15q11.2 for example so 80% left

Then they can promote their less disabling condition as an identity with more credibility if they so wish


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05 Jan 2023, 5:10 pm

carlos55 wrote:
Double Retired wrote:
Dengashinobi wrote:
In the case of autism I wouldn't like to detach it from the notion of disability, because it's fairly true even for people with mild symptoms, partly at least.
Yes but...

My symptoms are mild but I will agree there are some things I am not good at. But, in IT terminology, it is a specific feature that is disabled, not everything.

There are many, many things that disable certain capabilities:
<=>- colorblindness
<=>- left handedness
<=>- shortness
<=>- tone deafness
<=>-+=:
But I would not want to automatically declare anyone with those differences to be "disabled".

Clearly some people with Autism are disabled. Some are not. I am Autistic, I am not disabled, my family has classified me as "weird", I think.


That's why advocates need to get behind medical research so they can be free of the autism label and promote their less disabling sub category.

About 20% of autism has been given its own category i.e fragile x or 15q11.2 for example so 80% left

Then they can promote their less disabling condition as an identity with more credibility if they so wish
That would be great and I hope they can improve the diagnostic precision but I also have a suspicion there is another aspect that's not mentioned much: upbringing.

My parents (in the 1950s) saw I was doing "weird" things but concluded I wasn't being bad, I was just like that...so they decided not to punish me. (I get the impression that punishment was at least considered.) Things could've turned out drastically different if they had tried to force me to change something that I couldn't change. (I think this would now be called "Autism Acceptance" though back then it was more like "roll your eyes and maybe look the other way".)

I was fortunate enough to have my own bedroom after early childhood. My parents let me choose the color scheme and they did what I selected. Cadet blue walls, medium-dark blue carpet, black furniture, black curtains. The major adjustment they made was to make them black light-blocking curtains! (I also had a black towel and washcloth.) With hindsight I realize that room probably helped calm my senses.

And I feel absolute horror thinking about what would've happened if they had decided I was incurably weird and decided I needed to be institutionalized.

As they learn more about Autism I fervently hope they can work out the proper care and feeding for Autistic kids so they can be weird but happy and successful.

But I would allow that better diagnostic precision might be needed before they can work out the correct upbringing techniques. Different varieties of Autism might need different upbringing techniques to flourish.


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06 Jan 2023, 1:47 am

To me it comes across very strongly that some want the autism dx not because they think they have a disability, but as a means of saying 'I'm autistic, therefore I'm a brilliant and superior person'. To them it's a status symbol. IMO it makes absolutely no sense at all to have those who regard it as a 'status symbol' lumped in with the severely disabled, or even a person such as myself. It's certainly not a 'status symbol for me'. My life is not enriched by being autistic.



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06 Jan 2023, 12:58 pm

I don't think I've seen anyone assert on WP that their diagnosis means they are brilliant and superior.

It is a Spectrum but I think, even at best, it equates to difficulties.

For us older folk it might arguably sometimes equate to difficulties overcome.


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06 Jan 2023, 1:07 pm

firemonkey wrote:
To me it comes across very strongly that some want the autism dx not because they think they have a disability, but as a means of saying 'I'm autistic, therefore I'm a brilliant and superior person'. To them it's a status symbol. IMO it makes absolutely no sense at all to have those who regard it as a 'status symbol' lumped in with the severely disabled, or even a person such as myself. It's certainly not a 'status symbol for me'. My life is not enriched by being autistic.


I agree with you. I still don't think they have gotten a great diagnostic categorizing system for it. At least when you had 'Asperger's' it was more indicative of what the struggle was. I think making it a spectrum is fine, but I also think to be helpful, there should be subcategories. Kinda like how there are 'Personality Disorders', then within that are the different types, and within the types, even subtypes.

I feel almost apologetic sometimes when I say that I am autistic. I usually say I am just 'on the spectrum'. I don't really like the way 'high-functioning' sounds. I feel badly that fellow autists have daily struggles with things, especially those who cannot talk or have significant developmental delays. I am proud of being autistic and I think it makes me who I am in the Lord.


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06 Jan 2023, 3:51 pm

Some of the problem stems i think from the official terminology that's still bizarrely used to describe Autism.

Words like "Spectrum" or "heterogeneous" used even by autism scientists still imply a single condition, when in reality we already know its not.

If there are a hundred different genes implicated in autism, some autistics have none (or none known yet) or one, others more. If 20% of what was once autism is called something else now (usually named after gene effected), then we already know there are multiple autisms as a fact, just with overlapping symptoms downstream.

But they still use this type of language. There`s heterogeneous eye colour sure but heterogeneous schizophrenia maybe not.

The word "spectrum" by definition is a classification of scale of the same thing.

You can use the word "spectrum" with that of autism disability from very disabled to invisible but how can you have a spectrum of different eye conditions? where does glaucoma and macular degeneration fit on the eye disorder spectrum is there one worse than the other, causing greater blindness?

Where does fragile x and 15q11.2 deletion fit on an autism spectrum of scale?

The problem is autism was only ever a temporary label for overlapping unknown brain conditions and still is for 80% of us.

I can understand the annoyance of someone who has had problems their whole life and is then diagnosed and excited to be given an explanation of autism, only to find out "autism" itself never really existed other than a set of overlapping symptoms of unknown cause, on a tick sheet that were lumped together for diagnostic convenience.

Seems like some advocates rather than accepting this fact they want to double down on the temporary autism name even as it slowly and inevitably gets salamified into different sub categories until one day its no more


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