Why hasn't Autism (level) 1 become more used by the general public?

[BrokenBoy]

The DSM replaced such terms such as "aspergers syndrome" and "high functioning autism" with better terms such as Autism levels 1-3 yet I still see people using terms like "aspie" regardless. Why hasn't Autism level 1 been used as much by the general public? "Aspie is totally dated anyways.

 

[Starfire]

The DSM replaced such terms such as "aspergers syndrome" and "high functioning autism" with better terms such as Autism levels 1-3 yet I still see people using terms like "aspie" regardless. Why hasn't Autism level 1 been used as much by the general public? "Aspie is totally dated anyways.

I don’t think the general public is particularly interested in autism. There is no reason for them to keep up to date with the latest DSM terminology unless they are personally affected such as having friends, family children etc who are found to be on the spectrum.

I don’t think that’s unreasonable, it’s not possible to keep up to date with everything that affects everyone all the time, life is too short to have time for that.

 

[Progster]

Although the DSM changed the terminology a while ago, there are still a lot of people around with an Asperger's or (classic) autism diagnosis who were diagnosed before the DSM 5 came out. To talk about my own diagnosis, I use Asperger's and not ASD 1 because that is what I was diagnosed with and not ASD1. Also the ICD 10 still uses the term Asperger's.

 

[NothingToSeeHere]

As Progster said many of us where diagnosed before the changes to the DSM, and so the older terms are correct for us. Also we may have lived with the diagnosis long enough for it to become a part of our self identity.

Personally I say I have aspergers because people generally have some idea what it means, where as even I am not sure what "Autism Level 1" means. It's also such a clinical term that I think it's quite alienating.

I call myself an aspie because I like the word and it accurately represents my diagnosis and my identity. I don't even know how I would use "autism level 1" to refer to myself... "I'm a oneie"? "I'm autistic, first class!"?

Finally, the DSM is not the only diagnostic guide and it does not dictate universal reality or popular culture.

 

[zurb]

Some great points above.
One of the reasons the DSM 5 is rapidly losing traction outside of the USA is that it has to be bought by each clinician. ICD 10 however is publicly available. As for ourselves, we’ve stripped almost all references of the DSM out of all of our publications due to copyright concerns.
Personally, I still like ‘Aspie’, and it is my preferred term.
I’m interested to know why you consider level 1-3 better terms. To me, the numbers lack any meaning.

 

[All-Rounder]

I'll go ahead and quote how Autistamatic explained it.

I mean no disrespect to you @Rexi but that is not good advice. There is no low or high functioning within the autistic spectrum and to explain it to someone in that fashion can be very damaging to us all. Functioning labels are an outdated and simplistic view of the autistic spectrum. It may be a temporary solution for a short term conversation, to get someone off our backs, but it is a concept that harms every autistic person alive.

You are right that many people have a very negative, deficit biased view of autism, but this is not a constructive way to address it. Maybe you and @Julie Gross might have a read of the post and attached article that @Isadoorian kindly posted earlier

https://www.autismforums.com/threads/its-a-spectrum-isnt-quite-as-it-sounds.30116/

This was in reply to my suggestion of using the high functioning vs low functioning label to explain to people who think someone isn't autistic because they don't look/seem like it, and ever since I switched my 'aspies' term to 'auties' and I just use that.

This is the original thread in which the discussion took place:
Why is this happening to me? What is going on? Please help!!

 

[Nomen Dubium]

Chances are it's like most things in popular culture: the more technical a term becomes, the less interest Joe Average has in it. 'Aspie', 'Sperg', etc are vernacular hooks and they see more exposure in mainstream media than do specific clinical terminology, which gets pushed into 'scientific' programming. The result of using such hooks for so many years is that unless there's a concerted across-the-board effort to change peoples' thinking, the established terminology remains the norm.

 

[Crossbreed]

Not everyone who had an Aspergers diagnosis was officially commuted to ASD1. We just use it, now, because it most closely resembles our experience on the spectrum.

 

[Streetwise]

Not everyone who had an Aspergers diagnosis was officially commuted to ASD1. We just use it, now, because it most closely resembles our experience on the spectrum.

do you know exactly why it was invented ?as you have a lot of experience with autism !I have very little !

 

[Crossbreed]

do you know exactly why it was invented ?as you have a lot of experience with autism !I have very little !

Severity levels describe the intensity of the co-morbid conditions, not the autism, itself.

 

[Vindicator Phoenix]

When analysis of autism is involved, I tenaciously distance myself from the medical community. Why? Abundant stigma and negligence of our strengths. I don't like being called a "disorder" or a "syndrome."

 

[All-Rounder]

When analysis of autism is involved, I tenaciously distance myself from the medical community. Why? Abundant stigma and negligence of our strengths. I don't like being called a "disorder" or a "syndrome."

Good point. When calling someone who has autism, bipolar, etc by any of those labels, that doesn't make everything they are, even if there's a label for all of the tags such as neurodiverse. People are more than that, different personality and different minds, strengths too.

 

[clg114]

The DSM replaced such terms such as "aspergers syndrome" and "high functioning autism" with better terms such as Autism levels 1-3 yet I still see people using terms like "aspie" regardless. Why hasn't Autism level 1 been used as much by the general public? "Aspie is totally dated anyways.

It is probably because so many of us were diagnosed with the criteria in the DSM-IV. My diagnoses says that I have been diagnosed with Asperger's Syndrome (DSM-IV 299.80). The way that I see it, that makes me a Aspie. However it may be true that I am totally dated.

It is debatable whether the terms in the DSM-V are better or not. Bunching everything into ASD levels 1 thru 3 is simplifying autism to much. Autism is not a simple subject.

Now for the real reason that I do not like the DSM-V. Ever since 2013 it has been much harder to get a diagnosis. Why was the DSM-V set up this way? I believe that it was for political and economic reasons, not the best interest of the patient.

 

[Autistamatic]

I've recorded a video I hope to get online by the weekend about the controversy over functioning labels which discusses some of the points raised here. I'll post a link on this forum as usual

 

[xudo]

The DSM replaced such terms such as "aspergers syndrome" and "high functioning autism" with better terms such as Autism levels 1-3 yet I still see people using terms like "aspie" regardless. Why hasn't Autism level 1 been used as much by the general public? "Aspie is totally dated anyways.

I'm in the UK so we use ICD-10, which still includes Asperger's. I was diagnosed 3 years ago with ASD, specifically Asperger's. Aspie is also quicker to say and type than autism level one.

 

[GrownupGirl]

Because NTs still think we're all severely intellectually disabled and therefor on the same label, I mean level.
After hearing this from one genius NT in a Facebook story I decided to quit Facebook. For a long while, anyway.

 

[Starfire]

Because NTs still think we're all severely intellectually disabled and therefor on the same label, I mean level.
After hearing this from one genius NT in a Facebook story I decided to quit Facebook. For a long while, anyway.

If you’ve heard something from one neurotypical, you’ve heard something from one neurotypical. It would be silly and patently untrue to believe that’s what they all think, because they don’t.

 

[china autie]

The general public cares little about these things I think also.

I was dx with "classic" autism in 1960. Aspergers was not recognized then like it is now, and would not have fit me because of the severe language delay.

I may present now as level 1 on goid days and level 2 on meltdown or shutdown times.

I think level 1, 2, 3 are just sneaky ways to get around high/low functioning labels.

I certainly feel like I need more,support than I am getting.

Officially, I am getting zero support.
Unofficially, my boss helps me with work issues--including soft skills-- and the internet helps me with other autistic stuff.

Not qualified for any autistic supports because the paperwork with my dx and recommending institutionalization has been lost or destroyed for several decades.

I would have to go through dx again and the cost is prohibitative.

 

[Running Girl]

For me its about level of stigma. 'Autism' has the greater stigma, regardless of any qualifiers of level.

 

[onlything]

DSM-V is not even recognised in my country. It may have changed some but, to be honest, not much. It seems to carry very little weight outside USA.