Board index › General Discussion › General Autism Discussion

What is everyone's problem with the ASD Level System?

Page 4 of 6 [ 95 posts ]  Go to page Previous  1, 2, 3, 4, 5, 6  Next

Previous topic | Next topic

JourneyFan
Tufted Titmouse
Tufted Titmouse

Joined: 8 Dec 2021
Gender: Female
Posts: 43
Location: UK

21 Feb 2022, 1:38 pm

Joe90 wrote:
It does my head in when people on the spectrum say there is no such thing as functioning levels. I think high-functioning Aspies don't want to admit that they're how they are, that they want to be more severely affected for some reason. I'm not saying they don't deserve any support, but you still can't deny the fact that some Aspies have more capabilities than other Aspies (Aspies=all people on the spectrum).


Yes and I find that it's the same people who prefer to call it a "condition" rather than a "disorder". If you struggle with communication or in social settings, and require support with these things, then that is a disorder is it not?



AardvarkGoodSwimmer
Veteran
Veteran

User avatar

Joined: 26 Apr 2009
Age: 61
Gender: Male
Posts: 7,665
Location: Houston, Texas

21 Feb 2022, 1:51 pm

cyberdad wrote:
AardvarkGoodSwimmer wrote:
cyberdad wrote:
. . . Third the people who are in most need of support are the least likely to get any from the higher functioning community. . .

I think we need start thinking about standing in solidarity with our non-verbal sisters and brothers, as always simply to the best of our abilities.

We certainly have a head start knowing what sensory issues are all about.


That would be ideal, unfortunately I've seen no evidence of it for the last 15 years.

In the U.S., there’s the self-advocacy group ASAN which seems to focus on legal and political issues (and nothing wrong with that!):

https://autisticadvocacy.org/

I think the UK is further along than us in the States.



AardvarkGoodSwimmer
Veteran
Veteran

User avatar

Joined: 26 Apr 2009
Age: 61
Gender: Male
Posts: 7,665
Location: Houston, Texas

21 Feb 2022, 2:07 pm

HeroOfHyrule wrote:
I already try to "stand in solidarity" with people who are "lower functioning" than me, though when the parents of those people demonize "higher functioning" autistics . . .

I tried to connect with a local group over MeetUp.com and the leader was highly suspicious of me. I think he viewed me as a potential child abuser. (I guess he’s doing his job in his own mind of trying to protect the group.)

A seasoned activist who’s with ASAN told me I’d have more luck with adult disability rights group even though they’re not specifically about autism at all.

And perhaps later on, as a group, we can try to bridge-build with a parents’ group.



AardvarkGoodSwimmer
Veteran
Veteran

User avatar

Joined: 26 Apr 2009
Age: 61
Gender: Male
Posts: 7,665
Location: Houston, Texas

21 Feb 2022, 2:31 pm

And we probably should mention that the major group:

Autism Speaks

or, Autism $peaks!,

is all about flashy fundraising and holding out the promise of “normal” to parents.

And when they talk about research, one of the earlier steps (whether intended or not) will be to use amniocentesis to identify fetuses on the spectrum. And if it’s anything like Downs syndrome, most women will choose to abort.

So, it’s kind of a race between finding and presenting all the ways in which a person on the spectrum can have a full and meaningful life, and tech progress on the other hand.

And yes, women do have the right to choose. But the whole overall situation is both kind of sad, and kind of infuriating.

—————————

And if it comes up, yes, I’m all in favor of drawing a distinction between a public stim and a private stim.

But I think some of these “normalcy” advocates are just against stimming across the board. And personally, I find stimming highly helpful, as I think many of us on the spectrum do.



AquaineBay
Veteran
Veteran

User avatar

Joined: 6 Apr 2017
Age: 30
Gender: Male
Posts: 1,019
Location: Houston, Texas

21 Feb 2022, 2:53 pm

From my experience I have only heard people that are self-diagnosed have a problem with ASD levels or people on the spectrum who are shall I say..."delusional". On the first one some have taken autism as an identity instead of a disorder and only can list traits or experiences that any other person without ASD can have but they just focus more on it or they think they are "special" or something(at least they want to be). The problem is when their world starts to crumble when they have to take in to consideration that they may not be on the spectrum and just experiencing life like any other person which takes away from them being "special" or "unique".

The latter I have seen where someone is on the spectrum but doesn't like that they may be lower or higher on the spectrum than they think they are. They turn it into a competition of who has it better or worse or they have a superiority complex and belittles others on the spectrum that they think are "lower" than them not realizing that you can be on the same level but have different problems.

That is what observed when it came to people not liking the ASD levels.


_________________
Autism is a disorder not a personality trait!

"God grant me the serenity to accept the things I cannot change,
Courage to change the things I can,
and Wisdom to know the difference."


carlos55
Veteran
Veteran

Joined: 5 Mar 2018
Gender: Male
Posts: 2,014

21 Feb 2022, 3:35 pm

AardvarkGoodSwimmer wrote:
cyberdad wrote:
AardvarkGoodSwimmer wrote:
cyberdad wrote:
. . . Third the people who are in most need of support are the least likely to get any from the higher functioning community. . .

I think we need start thinking about standing in solidarity with our non-verbal sisters and brothers, as always simply to the best of our abilities.

We certainly have a head start knowing what sensory issues are all about.


That would be ideal, unfortunately I've seen no evidence of it for the last 15 years.

In the U.S., there’s the self-advocacy group ASAN which seems to focus on legal and political issues (and nothing wrong with that!):

https://autisticadvocacy.org/

I think the UK is further along than us in the States.


ASAN is largely dedicated to the Neurodiversity paradigm, including the bits about being autistic is like being left-handed.

It’s largely a delusional “flat earth” like anti-science group that likes to whitewash the struggles and disability of autism.

In simple language that means suppressing attention to those with more severe symptoms in favour of those with largely manageable symptoms, all under the goal of changing the image of autism.

This is great for those with minor symptoms like autistic celebs who want “victim status” for attention and greater movie roles, or independent career aspies as it helps improve their image for potential employers, but all at the expense of those further down the severity chain (not that far down) who will never work or live independently.

These people, they risk losing their voice and with it potential help both societal & at a government level as why help people who are just different rather than in need of help or disabled. Its far easier to ignore?

In the ASAN world they would rather these people other 90% of autistics were hidden away & not associated with autism.


_________________
"The reasonable man adapts himself to the world; the unreasonable one persists in trying to adapt the world to himself. Therefore all progress depends upon the unreasonable man."

- George Bernie Shaw


Joe90
Veteran
Veteran

User avatar

Joined: 23 Feb 2010
Gender: Female
Posts: 26,492
Location: UK

21 Feb 2022, 4:44 pm

JourneyFan wrote:
Joe90 wrote:
It does my head in when people on the spectrum say there is no such thing as functioning levels. I think high-functioning Aspies don't want to admit that they're how they are, that they want to be more severely affected for some reason. I'm not saying they don't deserve any support, but you still can't deny the fact that some Aspies have more capabilities than other Aspies (Aspies=all people on the spectrum).


Yes and I find that it's the same people who prefer to call it a "condition" rather than a "disorder". If you struggle with communication or in social settings, and require support with these things, then that is a disorder is it not?


Well they wouldn't call it Autism Spectrum Disorder if it wasn't a disorder. :lol:


_________________
Female


League_Girl
Veteran
Veteran

User avatar

Joined: 4 Feb 2010
Gender: Female
Posts: 27,280
Location: Pacific Northwest

21 Feb 2022, 5:24 pm

Probably because people are concerned they won't get the support they need if they are put at level one. From what I know, at level 1 you will still get your support, social security, job services that employ people with disabilities. What other services do they want? Social workers coming to visit their home for daily needs, someone to come to their house and cook and clean for them like have a free house keeper? Struggling NTs don't get this help either. Do they also want someone to grocery shop for them?


_________________
Son: Diagnosed w/anxiety and ADHD. Also academic delayed and ASD lv 1.

Daughter: NT, no diagnoses. Possibly OCD. Is very private about herself.


League_Girl
Veteran
Veteran

User avatar

Joined: 4 Feb 2010
Gender: Female
Posts: 27,280
Location: Pacific Northwest

21 Feb 2022, 5:26 pm

Pieplup wrote:
kitesandtrainsandcats wrote:
"Everyone's Problem" with it?

Maybe everyone except me as I wasn't aware there was a problem.

But then again, with my health the mess it is with autoimmune and mitochondrial disease and all, there is a whole bunch of stuff going on in society which I turn out to not have been aware of.

there's is a significant amount of people in the autistic community who scold me for identifying as a level 2. I dont' mean everyone I'm just overexaggerating.



What? They're mad you are put at level 2? Are they jealous because they would want that level too for more help so they have an easier life? :lol:


_________________
Son: Diagnosed w/anxiety and ADHD. Also academic delayed and ASD lv 1.

Daughter: NT, no diagnoses. Possibly OCD. Is very private about herself.


League_Girl
Veteran
Veteran

User avatar

Joined: 4 Feb 2010
Gender: Female
Posts: 27,280
Location: Pacific Northwest

21 Feb 2022, 5:43 pm

Joe90 wrote:
I'm not saying people on the mild end of the spectrum don't need support or shouldn't deserve support, but they are the least affected on the spectrum. The reason we don't often get much support is because of lack of funding and government finances, which is why a lot of us mildly affected Aspies have to exaggerate our symptoms to get any support these days. But really, we shouldn't have to exaggerate our symptoms. So anyone here who is mild but gets support by exaggerating their symptoms on the application form aren't cheating the system, it's just that the government only believes that if one can walk, talk, drive, dress themselves, etc, then they are capable of working and don't need any support.

On the other hand, I receive no support, because I feel I don't really need it. The only time I'm going to need some support is if I was out of work or not earning enough money to keep my head above water. All I'll need is an advisor or someone to help me keep on track of looking for work, maybe find jobs for me, although I am capable of doing it myself I still find it daunting and struggle to keep myself on track due to ADHD. But according to the government, stress, anxiety, depression and ADHD are "no excuse" and so they aren't going to be sensitive when it comes to emotional states. According to the government only people with no legs or something like that have an excuse. I'm not saying having physical disabilities like no legs is easy or less of a disability than anything else, but having emotional/developmental problems can actually affect a person's functioning in employment in more complex ways and it should be addressed more.


What support do us level one folks need?

I never needed to exaggerate mine to get any help. I still get my SSDI and I still work for a company that employs people with disabilities.

Are things different in the UK where people with level one ASD are denied disability payment or employment services for those with disabilities?


_________________
Son: Diagnosed w/anxiety and ADHD. Also academic delayed and ASD lv 1.

Daughter: NT, no diagnoses. Possibly OCD. Is very private about herself.


JourneyFan
Tufted Titmouse
Tufted Titmouse

Joined: 8 Dec 2021
Gender: Female
Posts: 43
Location: UK

21 Feb 2022, 5:51 pm

League_Girl wrote:
Joe90 wrote:
I'm not saying people on the mild end of the spectrum don't need support or shouldn't deserve support, but they are the least affected on the spectrum. The reason we don't often get much support is because of lack of funding and government finances, which is why a lot of us mildly affected Aspies have to exaggerate our symptoms to get any support these days. But really, we shouldn't have to exaggerate our symptoms. So anyone here who is mild but gets support by exaggerating their symptoms on the application form aren't cheating the system, it's just that the government only believes that if one can walk, talk, drive, dress themselves, etc, then they are capable of working and don't need any support.

On the other hand, I receive no support, because I feel I don't really need it. The only time I'm going to need some support is if I was out of work or not earning enough money to keep my head above water. All I'll need is an advisor or someone to help me keep on track of looking for work, maybe find jobs for me, although I am capable of doing it myself I still find it daunting and struggle to keep myself on track due to ADHD. But according to the government, stress, anxiety, depression and ADHD are "no excuse" and so they aren't going to be sensitive when it comes to emotional states. According to the government only people with no legs or something like that have an excuse. I'm not saying having physical disabilities like no legs is easy or less of a disability than anything else, but having emotional/developmental problems can actually affect a person's functioning in employment in more complex ways and it should be addressed more.


What support do us level one folks need?

I never needed to exaggerate mine to get any help. I still get my SSDI and I still work for a company that employs people with disabilities.

Are things different in the UK where people with level one ASD are denied disability payment or employment services for those with disabilities?


I would like to know this more as I am in the UK and was diagnosed a few weeks ago. I am still waiting for the report so I have not idea what they use in terms of levels. I do know that they do not use the DSM here but the ICD instead (which is based on the DSM). Asperger Syndrome is also still given as a diagnostic term here.
Disability payments are only given if the condition causes severe disruption to the person's life.



League_Girl
Veteran
Veteran

User avatar

Joined: 4 Feb 2010
Gender: Female
Posts: 27,280
Location: Pacific Northwest

21 Feb 2022, 5:59 pm

AardvarkGoodSwimmer wrote:
HeroOfHyrule wrote:
I already try to "stand in solidarity" with people who are "lower functioning" than me, though when the parents of those people demonize "higher functioning" autistics . . .

I tried to connect with a local group over MeetUp.com and the leader was highly suspicious of me. I think he viewed me as a potential child abuser. (I guess he’s doing his job in his own mind of trying to protect the group.)

A seasoned activist who’s with ASAN told me I’d have more luck with adult disability rights group even though they’re not specifically about autism at all.

And perhaps later on, as a group, we can try to bridge-build with a parents’ group.


Why would you be viewed as a child abuser?


_________________
Son: Diagnosed w/anxiety and ADHD. Also academic delayed and ASD lv 1.

Daughter: NT, no diagnoses. Possibly OCD. Is very private about herself.


AardvarkGoodSwimmer
Veteran
Veteran

User avatar

Joined: 26 Apr 2009
Age: 61
Gender: Male
Posts: 7,665
Location: Houston, Texas

21 Feb 2022, 6:04 pm

AquaineBay wrote:
From my experience I have only heard people that are self-diagnosed have a problem with ASD levels . . .

Please realize that many people my age, I’m 59-years-old, are going to be self-diagnosed.



AardvarkGoodSwimmer
Veteran
Veteran

User avatar

Joined: 26 Apr 2009
Age: 61
Gender: Male
Posts: 7,665
Location: Houston, Texas

21 Feb 2022, 6:16 pm

carlos55 wrote:
ASAN is largely dedicated to the Neurodiversity paradigm, including the bits about being autistic is like being left-handed.

It’s largely a delusional “flat earth” like anti-science group that likes to whitewash the struggles and disability of autism.

In simple language that means suppressing attention to those with more severe symptoms in favour of those with largely manageable symptoms, . . . . .

Maybe ASAN doesn’t do enough for our quote “low-functioning” sisters and brothers. And I’d much rather simply say our non-verbal sisters and brothers.

But they do do some things.

For example, they filed a lawsuit against a care facility which uses electrical shocks. The judge had a chance to issue an injunction (court order) stopping this. Unfortunately, he or she failed to do so, perhaps swayed by vague talk by professionals of claiming the practice is useful in some circumstances or similar nonsense (without talking about better alternatives in a clear, central, direct way).

Anyway, it was a poor court decision. And I think I can pull a link about ASAN shining a light on this injustice.



AardvarkGoodSwimmer
Veteran
Veteran

User avatar

Joined: 26 Apr 2009
Age: 61
Gender: Male
Posts: 7,665
Location: Houston, Texas

21 Feb 2022, 6:26 pm

Image

https://autisticadvocacy.org/2021/12/as ... er-update/

Quote:
‘ . . . Unfortunately, some of our most important fights this year won’t end on a high note. ASAN is outraged at the DC Circuit’s refusal to reconsider a court ruling that allows the Judge Rotenberg Center to continue using electric shocks on disabled people. ASAN calls on the FDA to do whatever it takes to reinstate a ban by immediately reintroducing a new rule that would address the court’s concerns while effectively banning these devices. Our community has fought long and hard to end the Judge Rotenberg Center’s torture of disabled people. ASAN will continue to collaborate with state and federal policymakers, including the FDA, to end all forms of abuse against disabled people. We will not rest until no disabled person is subjected to torture in the name of “treatment.” . . . ’

(the underlining is mine)


Again, good for ASAN for championing this issue.



AardvarkGoodSwimmer
Veteran
Veteran

User avatar

Joined: 26 Apr 2009
Age: 61
Gender: Male
Posts: 7,665
Location: Houston, Texas

21 Feb 2022, 6:57 pm

League_Girl wrote:
AardvarkGoodSwimmer wrote:
HeroOfHyrule wrote:
I already try to "stand in solidarity" with people who are "lower functioning" than me, though when the parents of those people demonize "higher functioning" autistics . . .

I tried to connect with a local group over MeetUp.com and the leader was highly suspicious of me. I think he viewed me as a potential child abuser. (I guess he’s doing his job in his own mind of trying to protect the group.)

A seasoned activist who’s with ASAN told me I’d have more luck with adult disability rights group even though they’re not specifically about autism at all.

And perhaps later on, as a group, we can try to bridge-build with a parents’ group.


Why would you be viewed as a child abuser?

On a MeetUp.com page for an event I wrote, “May I attend?” I was a member of this group and previously made several posts in favor of Spectrum Rights.

I wanted to start involved locally. I envisioned maybe chatting casually with parents about supported employment, which I used to work in.

Instead . . .

One of the leaders kicked me out of the group and sent me an email saying, No, we’re not going to have adults playing with other people’ children.

I wrote back a brief, polite email with a few sentences about self-advocacy and Spectrum rights as a way forward in the future.

He wrote back saying I made weird requests or asked weird questions.

I backed off as easily as I could and did not write a return email.

————————————

And I’m guessing his initial was that I might be a hard to handle person (maybe with super patchy communication skills), or that I might be a pedophile. Yes, I’m thinking that was in his mind even though he never said it.

The initial event was a Houston-area nature walk, which did seem kind of fun.

And the name of the group was pretty general without the words of either parents or children in the title.

An autistic couple could perhaps attend, maybe, I’m guessing. But single men are viewed with suspicion, and that’s just the social reality of the situation. And even though disappointing, it’s okay with me.

And this whole thing was 10 years ago.