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carlos55
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22 Jan 2023, 3:15 pm

To add to my last comments, you cant be legally disabled without having an official medical disorder.

You cant get disability welfare or a blue disabled badge for a car in the UK without doctors / medical evidence.

I cant just demand a carer to do my shopping for me because i cant be bothered to walk, i need to prove i have some kind of medical impairment that prevents me from walking, its quite strict.

It also has to be an official medical disorder that causes a major impairment of some kind, not one made up.

I understand in the US welfare is not automatically paid to autistic people, they have to prove medically they have a disorder that prevents them from doing the things NTs or more capable autistic people are capable of too, like being able to live alone or working for example.

The term medical disorder usually doesn't need explaining as its simple, for example humans have evolved to talk we have vocal cords and brain structures to allow for this. When a human adult like an autistic person cannot talk he has a disorder, in other words there is something going on preventing him from using the biological things on his body that humans are born with, like vocal cords normally in other words a disorder.

Autistic advocates who don't feel they have a disorder or want curing is fine, but trying to own the whole of autism and whitewash the rest of it, for their own coping strategy, calling black white and denying reality itself are simply causing harm and its good at last there is some push back against this.


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22 Jan 2023, 3:34 pm

carlos55 wrote:
Mona Pereth wrote:
Although most autistic self-advocates have no issue with calling autism a "disability," many of us are uneasy about calling it a "disorder." Our main issues with the "disorder" framing are:


I suspect that kind of creeping orwellian doublespeak is exactly the kind of thing Pieplup is trying to prevent.

Here's the point: We want efforts to to improve our lives in the here-and-now to be prioritized over the search for "cures," and as far as any "cure" research is concerned, we want treatments for specific neurological impairments associated with autism -- especially the most severely disabling ones -- to be prioritized over any attempts to "cure" the general category of "autism" as a whole.

carlos55 wrote:
How can a disability not be a disorder :lol: who`s trying to fool who

In case anyone is confused, here`s an English dictionary mention (bolded the most relevant):-

1.lack of adequate power, strength, or physical or mental ability; incapacity.

2. a physical or mental handicap, especially one that hinders or prevents a person from performing tasks of daily living, carrying out work or household responsibilities, or engaging in leisure and social activities.

3. anything that disables or puts one at a disadvantage:
His mere six-foot height will be a disability in professional basketball.

4. the state or condition of being disabled.

5. legal incapacity; legal disqualification.


https://www.dictionary.com/browse/disability

Note that definition #3 above has an example that is clearly NOT a "dsorder": "His mere six-foot height will be a disability in professional basketball."

Definition #2 refers to things that in many cases can be considered "disorders," but whether you choose to use that term or not depends on your situation and on your personal, social, and political priorities.

Some of us may choose to use the word "disorder" in some contexts but not others.


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22 Jan 2023, 3:36 pm

carlos55 wrote:
To add to my last comments, you cant be legally disabled without having an official medical disorder.

You cant get disability welfare or a blue disabled badge for a car in the UK without doctors / medical evidence.

I cant just demand a carer to do my shopping for me because i cant be bothered to walk, i need to prove i have some kind of medical impairment that prevents me from walking, its quite strict.

It also has to be an official medical disorder that causes a major impairment of some kind, not one made up.

I understand in the US welfare is not automatically paid to autistic people, they have to prove medically they have a disorder that prevents them from doing the things NTs or more capable autistic people are capable of too, like being able to live alone or working for example.

The term medical disorder usually doesn't need explaining as its simple, for example humans have evolved to talk we have vocal cords and brain structures to allow for this. When a human adult like an autistic person cannot talk he has a disorder, in other words there is something going on preventing him from using the biological things on his body that humans are born with, like vocal cords normally in other words a disorder.

Autistic advocates who don't feel they have a disorder or want curing is fine, but trying to own the whole of autism and whitewash the rest of it, for their own coping strategy, calling black white and denying reality itself are simply causing harm and its good at last there is some push back against this.

I see your point here. I would say that the word "disorder" is useful in some contexts but not in others.


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carlos55
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22 Jan 2023, 6:06 pm

Mona Pereth wrote:
carlos55 wrote:
To add to my last comments, you cant be legally disabled without having an official medical disorder.

You cant get disability welfare or a blue disabled badge for a car in the UK without doctors / medical evidence.

I cant just demand a carer to do my shopping for me because i cant be bothered to walk, i need to prove i have some kind of medical impairment that prevents me from walking, its quite strict.

It also has to be an official medical disorder that causes a major impairment of some kind, not one made up.

I understand in the US welfare is not automatically paid to autistic people, they have to prove medically they have a disorder that prevents them from doing the things NTs or more capable autistic people are capable of too, like being able to live alone or working for example.

The term medical disorder usually doesn't need explaining as its simple, for example humans have evolved to talk we have vocal cords and brain structures to allow for this. When a human adult like an autistic person cannot talk he has a disorder, in other words there is something going on preventing him from using the biological things on his body that humans are born with, like vocal cords normally in other words a disorder.

Autistic advocates who don't feel they have a disorder or want curing is fine, but trying to own the whole of autism and whitewash the rest of it, for their own coping strategy, calling black white and denying reality itself are simply causing harm and its good at last there is some push back against this.

I see your point here. I would say that the word "disorder" is useful in some contexts but not in others.


That’s what I said if someone feels they don’t have a disorder that’s fine.

The problem is some advocates want to pretend that those who clearly have a disorder don’t by attempting to change language, thus imposing their view on others that can have dangerous consequences as peoples problems become whitewashed and ignored.

Quote:
Here's the point: We want efforts to to improve our lives in the here-and-now to be prioritized over the search for "cures," and as far as any "cure" research is concerned, we want treatments for specific neurological impairments associated with autism -- especially the most severely disabling ones -- to be prioritized over any attempts to "cure" the general category of "autism" as a whole.


This claim has never made sense there is little overlap between science and government accommodations.

Scientists will research neuro developmental disorders regardless because that’s what they do and will never stop.

The same for drug companies too

Brain research will never stop.

Governments will grant things to disabled people like free bus passes, welfare payments carers etc because that’s what they do.

They are two very different separate things.


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31 Jan 2023, 12:58 pm

Mona Pereth wrote:
ASPartOfMe wrote:
I agree that it is morally wrong to identify as something you are not be it autistic or black etc. There is nothing questionable about it, it is just bad. Autistics have enough stigmas we have to deal with. Those non-autistics identifying as autistic and faking autism just add more stigmas and stereotypes.

How common is this? Where on Earth have you run into people whom you had reason to suspect of being "non-autistics identifying as autistic and faking autism"? And what were your reasons for suspecting this???

As far as I can tell, the vast majority of self-diagnosed autistic people (1) are sincere, (2) have studied the subject in enough depth that they are highly likely to be correct about themselves, but (3) simply cannot afford the monetary cost of getting evaluated. Being against self-diagnosis, even well-informed self-diagnosis, is classist IMO.

The only kinds of self-diagnosis I would be inclined to object to are (1) ill-informed, spur-of-the-moment self-diagnosis and (2) celebrities talking about how they "might be a little bit autistic." If they are celebrities, they can easily afford to get evaluated, and therefore should either get evaluated or shut up.


Agrees strongly with the above post . "Pielup" So many of us are additionally disabled by PTSD and general do not aspire to confrontation with anyone , am aware of At least two level twos that have gone into hermit status due to the constraints of interactions with N Ts .Sometimes from the position of over abuse and add PTSD and one might consider getting a point across to some less than knowledgeable, can sometimes can cause an over reation ,when engaging these same people.And occassionally have a reverse effect . (Just a thougt offering ) So am hoping you can get the additional assistance required to get your Group going .


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carlos55
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31 Jan 2023, 2:04 pm

Jakki wrote:
Mona Pereth wrote:
ASPartOfMe wrote:
I agree that it is morally wrong to identify as something you are not be it autistic or black etc. There is nothing questionable about it, it is just bad. Autistics have enough stigmas we have to deal with. Those non-autistics identifying as autistic and faking autism just add more stigmas and stereotypes.

How common is this? Where on Earth have you run into people whom you had reason to suspect of being "non-autistics identifying as autistic and faking autism"? And what were your reasons for suspecting this???

As far as I can tell, the vast majority of self-diagnosed autistic people (1) are sincere, (2) have studied the subject in enough depth that they are highly likely to be correct about themselves, but (3) simply cannot afford the monetary cost of getting evaluated. Being against self-diagnosis, even well-informed self-diagnosis, is classist IMO.

The only kinds of self-diagnosis I would be inclined to object to are (1) ill-informed, spur-of-the-moment self-diagnosis and (2) celebrities talking about how they "might be a little bit autistic." If they are celebrities, they can easily afford to get evaluated, and therefore should either get evaluated or shut up.


Agrees strongly with the above post . "Pielup" So many of us are additionally disabled by PTSD and general do not aspire to confrontation with anyone , am aware of At least two level twos that have gone into hermit status due to the constraints of interactions with N Ts .Sometimes from the position of over abuse and add PTSD and one might consider getting a point across to some less than knowledgeable, can sometimes can cause an over reation ,when engaging these same people.And occassionally have a reverse effect . (Just a thougt offering ) So am hoping you can get the additional assistance required to get your Group going .


Leaving aside everything discussed on this thread. PTSD is a BIG part of autism, along with OCD and sticky memories the trauma gets you through the decades when you least expect no escape.


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31 Jan 2023, 4:58 pm

I'm in for high needs autism advocacy -- specifically to it's vulnerability to abuse and poor accomodations.

I'm in for their here and now issues -- not for the unborn, and definitely not for catering societies that perpetuates mass unconscious biases along with the problems of mainstream education and ways of living.

Not because of another functioning level wars in particular.
Not another stupid AS with ID vs AS without ID war.

Definitely not another foolish ideologies that perpetuates unhealthy ways of living and treating other people because it's the 'norm' or it's 'natural selection'. :roll:


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01 Feb 2023, 12:46 am

Likes and enjoy the thoughts put forth in the above Post by Edna3362 . Very Poignant ....
We definitely do NOT need to segragate amongst each other. Team / group efforts between all for all .
Wish we had a lobbyist or something of that sort in Congress , if / when this actually grew bigger .
But am pretty sure, not going to get there to that point anytime soon . Unless some other group had gone that way .
Every so often , I wonder if any of those political types have any Autistic relations/ children . 8O


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10 Feb 2023, 12:29 pm

High Needs Autistic Self-Advocates is what you are trying to describe. If there are any "severe" or "low functiong" self-advocates out there, I'll be more than happy to accept and intake their voices and needs. However, I do acknowledge the fact that non-verbal and high support autistics that may oftentimes be judged as "low-functioning" but may in fact have the "mental functioning" to communicate and articulate words by AAC.


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10 Feb 2023, 12:42 pm

GoldTails95 wrote:
High Needs Autistic Self-Advocates is what you are trying to describe. If there are any "severe" or "low functiong" self-advocates out there, I'll be more than happy to accept and intake their voices and needs. However, I do acknowledge the fact that non-verbal and high support autistics that may oftentimes be judged as "low-functioning" but may in fact have the "mental functioning" to communicate and articulate words by AAC.
not what we mean by high needs we mean people who have level 2/3 autism. That being said there are examples of it. And no that’s not what we are trying to describe as the reality is most attempts level 2s make to self advocate fail cause they are either spoken over or their communication issues are used against them. High needs autistic advocates is the right word cause we are a group of people advocating for high needs autistic people (Level 2/3s) We are not just level 2/3 people advocating for ourselves as an organization like that would be very difficult if not impossible for it to function smoothly. ATM we are about half level 2/3 people and Half Level 1/NT people. It’s not self advocacy cause when you have severe communication issues and communication can be extremely taxing selfadvocayc is rather limited. The reality of the situation for high needs autistic people is they are forced to advocate through other people. Our goal isn’t selfadvocacy at all. But to make it easier for high needs autistic people to advocate for themselves through other people. I consider level 2 people to be high needs cause level 2 people are severely disabled more often then not and often require support with nearly every aspect of life. I require support with everything except the most basic self care. This is why imo the dsm 5 refers to level 2 as substantial support and level 3 as very substantial support. Because saying level 2s are medium needs is a misnomer because they really aren’t. Most are severely disabled and often have several other comorgid conditions that further disable them. Further more one of the key members of our cause CriticalSorcery is. Level 3 nonverbal autistic person and they are currently doing a QNA on our subreddit.
But no HNAA is HNAA not HNASA. It’s many people coming together to spread awareness of what level 2/3 autistic people lives are like and help them have a platform to speak not a group of level 2/3 people advocating for themselves.


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10 Feb 2023, 1:03 pm

Jakki wrote:
Mona Pereth wrote:
ASPartOfMe wrote:
I agree that it is morally wrong to identify as something you are not be it autistic or black etc. There is nothing questionable about it, it is just bad. Autistics have enough stigmas we have to deal with. Those non-autistics identifying as autistic and faking autism just add more stigmas and stereotypes.

How common is this? Where on Earth have you run into people whom you had reason to suspect of being "non-autistics identifying as autistic and faking autism"? And what were your reasons for suspecting this???

As far as I can tell, the vast majority of self-diagnosed autistic people (1) are sincere, (2) have studied the subject in enough depth that they are highly likely to be correct about themselves, but (3) simply cannot afford the monetary cost of getting evaluated. Being against self-diagnosis, even well-informed self-diagnosis, is classist IMO.

The only kinds of self-diagnosis I would be inclined to object to are (1) ill-informed, spur-of-the-moment self-diagnosis and (2) celebrities talking about how they "might be a little bit autistic." If they are celebrities, they can easily afford to get evaluated, and therefore should either get evaluated or shut up.


Agrees strongly with the above post . "Pielup" So many of us are additionally disabled by PTSD and general do not aspire to confrontation with anyone , am aware of At least two level twos that have gone into hermit status due to the constraints of interactions with N Ts .Sometimes from the position of over abuse and add PTSD and one might consider getting a point across to some less than knowledgeable, can sometimes can cause an over reation ,when engaging these same people.And occassionally have a reverse effect . (Just a thougt offering ) So am hoping you can get the additional assistance required to get your Group going .

Couldn’t process what this means well can you try and restate it?


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10 Feb 2023, 3:44 pm

Not to get off-topic - Adutls with High Functioning Autism (HFA) are harder and, more elusive to serve that those with developmental disabilites more limiting than HFA.

The levels of the Autism Spectrum can be too confusing to understand, and are especially irrelevent to HFA

The focus on the various levels of the Autism Spectrum, and related support services are unnecessary, and even discouraging for HFA - that is too many of these services are mainly focused on developmental disabilites more limiting than HFA.

For further details on what might very-well be favorable for HFA adults, see my latest WP posts.



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10 Feb 2023, 5:08 pm

JustFoundHere wrote:
Not to get off-topic - Adutls with High Functioning Autism (HFA) are harder and, more elusive to serve that those with developmental disabilites more limiting than HFA.

The levels of the Autism Spectrum can be too confusing to understand, and are especially irrelevent to HFA

The focus on the various levels of the Autism Spectrum, and related support services are unnecessary, and even discouraging for HFA - that is too many of these services are mainly focused on developmental disabilites more limiting than HFA.

For further details on what might very-well be favorable for HFA adults, see my latest WP posts.

You seem to miss understand what HFA means, it just means you don’t have an IQ>70 that’s all it means as such what you are saying makes no sense but even if it did mean what you did think it means as a stand in for stereotypical Asperger’s syndrome it still wouldn’t make sense aspies are in no way harder to support they are easier to support. They aren’t more elusive to support either. All though if you have a developmental disability that everyone notices on sight it’s a lot more noticeable and more likely to be picked up on. I also don’t see how this is remotely relevant as stated our purpose is to spread awareness to the issues level 2/3 people face. Level 1s aren’t our concern there are dozens of organizations that are level 1s advocating for themselves but are Zero for more severely autistic people. In what way are support levels confusing or discouraging towards level 1s. Also by definition of HFa being so horribly defined levels are more relevant to HfA than normal autism cause of how damaging it could be to label a severely autistic person high functioning because people aren’t going to be prepared to meet their support needs. Like no most of what you say is just wrong?


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10 Feb 2023, 8:09 pm

Pieplup wrote:
Jakki wrote:
Mona Pereth wrote:
ASPartOfMe wrote:
I agree that it is morally wrong to identify as something you are not be it autistic or black etc. There is nothing questionable about it, it is just bad. Autistics have enough stigmas we have to deal with. Those non-autistics identifying as autistic and faking autism just add more stigmas and stereotypes.

How common is this? Where on Earth have you run into people whom you had reason to suspect of being "non-autistics identifying as autistic and faking autism"? And what were your reasons for suspecting this???

As far as I can tell, the vast majority of self-diagnosed autistic people (1) are sincere, (2) have studied the subject in enough depth that they are highly likely to be correct about themselves, but (3) simply cannot afford the monetary cost of getting evaluated. Being against self-diagnosis, even well-informed self-diagnosis, is classist IMO.

The only kinds of self-diagnosis I would be inclined to object to are (1) ill-informed, spur-of-the-moment self-diagnosis and (2) celebrities talking about how they "might be a little bit autistic." If they are celebrities, they can easily afford to get evaluated, and therefore should either get evaluated or shut up.


Agrees strongly with the above post . "Pielup" So many of us are additionally disabled by PTSD and general do not aspire to confrontation with anyone , am aware of At least two level twos that have gone into hermit status due to the constraints of interactions with N Ts .Sometimes from the position of over abuse and add PTSD and one might consider getting a point across to some less than knowledgeable, can sometimes can cause an over reation ,when engaging these same people.And occassionally have a reverse effect . (Just a thougt offering ) So am hoping you can get the additional assistance required to get your Group going .

Couldn’t process what this means well can you try and restate it?


Too sick to reply just now.


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11 Feb 2023, 5:51 pm

My responses are largely based-on the title of this discussion-thread 'High Needs Autistic Advocates' - as well as a discussion-thread placed in the 'Autism, Politics, Activism, and Media Representation Forum.'

Any consideration for a new discussion thread?

This discussion-thread seems confusing to follow. If I'm understading this correctly, I sense the gist of this discussion-thread is a call to boost supportive resources to assist people with Autism.

As I mentioned previously in this disc. thread, both extremes of the Autism Spectrum (such as High-Functioning Autism (HFA)), and developmental disabilities are terribly under-representated.

My personal experiences have involved both of these challenging extremes of the Autism Spectrum.

A recent experience is a fitting example: I was placed in a State-supported 'Independent Living Support' (ILS) program - that is geared toward clientele wiith developmental disabilities more limiting than HFA.

After several weeks (what could have been assesed in a few short weeks) the (ILS) staff felt more hard-pressed to serve an HFA client, than serving their main clientele......with developmental disabilities more limiting than HFA.

I quickly corresponded with my service coordinator (a gate-keeper of sorts) who received a promotion in her agency. I once again mentioned (what could have been determined in a few short weeks) to curb the practice of placing HFA clientele amongst clientele......with developmental disabilities more limiting than HFA.

A few years ago, our state agency the 'CA Regional Center' system expanded eligibilty to clientele with least restrictions to independence - such as HFA. Obviously, service practices are still to this day, unable to reflect just how to best serve clientele with HFA!

The COVID pandemic over the past three years has understandably focused service priorities on clients who are most dependent on services. Unless it's an emergency, HFA clientele barely exist on the CA Regional Center's radar.

Can it be asked that an (ableit small) part of improving services for HIGH Needs Autism clients is to curb the practice of placing of HFA clients amongst clientele......with developmental disabilities more limiting than HFA??



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18 Feb 2023, 12:50 am

From my own interpretation, this has nothing to do with any diagnosed autistic's IQ or achievements.

This is something to do with support needs, related and relative to community and accessibility.
LFA doesn't necessarily mean high support -- HFA doesn't necessarily mean low support.


If high support means '24-hour supervision and assistance in every adaptive daily living skills' yet doesn't need to take meds, is healthy and from a stable and safe environment...

No psychiatric issues or behavioral aggressions, even if it's so developmentally delayed, all they need is a carer -- not something complex.

No different from a well cared person with intellectual disability living their lives within their existence and capacity, really.

While they need help, don't need to be advocated by a group consisting of someone else other than those who are already providing them to begin with...
Because they already have access and community.


... What about those, regardless of achievement and abilities whether as a consequence of accomodations or lack of thereof, who are in need of therapy, in need of safe space or community, requires several hospital visits, and has no safety nets that the former has?

One doesn't need to have an IQ below 70 to have serious mental illness.
One doesn't need to be LFA to be born or trapped in a system that they didn't chose to be in or are largely inaccessible for them to have accomodations.

Identity, disorder, functioning levels -- it's irrelevant.

If anything, anyone privileged enough to be able to access doesn't need help from this form of advocacy, except as a way point of access and support for others who are in need of this particular advocacy.


So most advocates are not beneficiaries themselves like how self-advocacy does.
Potentially, everyone can be an advocate for high needs autism, benefiting high needs autistics.

But I don't think the dynamic of this advocacy doesn't have to be like those advocacies of 'profound autism' towards 'profound autistics' for obvious reasons.

While low support needs autism advocacy is more to do with fighting stigmas and dehumanization yet becoming sideways into labels and terms, 'profound autism' advocacy is more about preventing and curing autism yet consequently perpetuating stigmas implying that autistics are unwanted...

I think high support needs advocacy has more choices.
They're not fighting for identities and labels, they're not here to tell the world they're unwanted either when that's the part of their own problems.


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