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firemonkey
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06 Jun 2022, 3:58 am

BugsBunnyFan wrote:
Those types drive me crazy. I have really bad executive dysfunction that I don’t think those types are dealing with.


I have definite problems when it comes to organising and planning. I'm far from the best when it comes to multi step tasks.


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06 Jun 2022, 4:29 am

Good article, hammers home the very embarrassing truth concerning people who are very able and push an agenda suitable only to themselves at the expense of those who don't have the same abilities. I wish things like this were at the top of the social media hierarchy, but it's not gonna happen and that's why I have no social media accounts.



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06 Jun 2022, 4:50 am

^^^ Maybe some are OK,but I don't fit into the' terrible symptoms but did really well at x' category. Pressure and stress are my versions of superman's green kryptonite. That may be more to do with the SMI I also have rather than the ASD. Though to be honest I'm not up to date on research re ASD and the effects of pressure and stress.

I do get the impression that some like what are seen as the 'positive ' parts of being an autistic person enough to want the dx, but are vehemently against any suggestion they're disabled. Again I'm not in that category. I have absolutely no doubt that I'm disabled. I' m not this high achieving autistic superperson. Not because I'm stupid. High range IQ test scores show that that isn't true. However there is a significant adaptive functioning < IQ gap.

The dozen years after my wife died were one's of increasing self neglect; not that I saw it as such at the time. Since I've moved to where I am now,with support near at hand, I'm still not achieving great things but also I'm not self neglecting.


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firemonkey
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06 Jun 2022, 4:53 am

^^ Very well put.


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06 Jun 2022, 8:13 am

carlos55 wrote:
Quote:
The Gentrification of Disability

Freddie deBoer
May 23
504
When I was in my late 20s (early 2007 to mid 2009, maybe) I worked for the local public school district in my hometown. For the bulk of my time there I was in a special program for kids with severe emotional disturbance, which I’ve written about once or twice. But I worked in a number of capacities in those years, and for a little while I helped out in a conventional special ed classroom for the middle school. I guess you’d say I was a paraprofessional, just extra coverage when they needed it.

In that class there were two boys who had autism which resulted in severe academic and social and communicative impairments. One of them was completely nonverbal and had been his entire life. As I understood it, he had never been capable of speaking or reading, could not dress himself, wore sanitary garments, could not go to the bathroom without assistance. He would occasionally screech very loudly, without clear cause. I believe these days he would be referred to as having Level Three autism, as defined by the DSM. He needed a lot of help, and though he was unable to complete what might conventionally be called academic work the school provided him with structure, support, and time during which his mother didn’t have to care for him. I met her on several occasions when she came to pick him up after school. She would sometimes talk about the difficulties of raising a disabled child in language that would be frowned on today, but I admired how frank and honest she was.

She was really not a fan of the autism awareness community of the time. This was well before the “neurodiversity” movement and all of its habits. It was all about awareness, raising awareness, 5ks for awareness, bumper stickers for awareness. That was precisely what angered her the most. She said to me once, “What does awareness do for my kid? How does it help me?” Words to that effect. It was a good question, one I couldn’t answer. Today I don’t hear about awareness so much, but there’s still plenty of the basic disease of awareness thinking - the notion that what people who deal with a particular disability need is a vague positivity, that what every disabled person requires is the laurel of strangers condescendingly wishing them the best.

The purposes of "awareness" campaigns usually are:

1) To inform people about specific problems they might encounter and what services are (or aren't) available to help them.
2) To raise money for relevant charities.
3) To raise money and other support for political lobbying.
4) To create visible "hooks" (e.g. special ribbons or colored lights) for news stories to aid publicity campaigns to accomplish #1, #2, and #3 above.

The point of "awareness" campaigns is certainly NOT "that what every disabled person requires is the laurel of strangers condescendingly wishing them the best." The latter might be an annoying side-effect of "awareness" campaigns, but certainly not their purpose.

Anyhow, the "Autism Awareness" campaigns of Autism Speaks were very annoying, insulting, and upsetting to quite a few autistic people, who then called for "Autism Acceptance" instead of just "awareness."

carlos55 wrote:
Quote:
Now, with the rise of neurodiversity and the notion that autism is only different, not worse, we are confronted with similar questions. When a mother struggles every day to care for someone who will likely never be able to care for himself, what value could it hold for her that his condition is called diversity, rather than disorder? What value can it have for him, who cannot speak to comment on the difference?

How she perceives autism per se might have an effect on how she goes about trying to help her child learn to communicate (e.g. via typing).

carlos55 wrote:
Quote:
I thought of that mother when I read about the recent cancelation of an academic panel at Harvard.

The event was postponed, not outright cancelled. See the actual Harvard Crimson article that Freddie deBoer links to in his post, yet misrepresents.

carlos55 wrote:
Quote:
It seems a panel of experts was slated to speak on the subject of how best to help those with autism. But as they planned to speak about treatment, about treating autism as a hindrance to be managed, the event was decried as “violently ableist” by Harvard activists and swiftly shut down.

The "violently ablist" rhetoric here was "war against autism" -- a "war" which too often has yielded approaches that amounted to a war on autistic people. For example, Applied Behavior Analysis (ABA) has too often been used to "extinguish" harmless stims and force kids to ignore/dismiss their own feelings of pain. And all too many panicked parents have done far worse things, such as feeding their kids "Miracle Mineral Solution," a.k.a. bleach.

The Harvard Crimson article says the following about the relevant panelist, Marcia L. Hinds:
Quote:
The petition specifically condemned the language of panelist Marcia L. Hinds, the author of a book entitled “I Know You’re In There: Winning Our War Against Autism,” calling it “violent.”

Hinds said she understands the perspective of the petition and believes having autistic people on the panel would improve it, but she said she stands by the title of her book because it refers to her “personal war” raising an autistic son.

“Every once in a while, on a good day, I would catch a glimpse of the kid he was supposed to be before he slipped away again,” she said. “That’s the reason for the title, ‘I Know You’re In There: Winning Our War Against Autism.’ Autism was trying to steal my son and I couldn’t let that happen. And that’s why for me it was a war.”

This notion of autism as a child-stealing demon is reminiscent of the infamous Autism Speaks video from 2008 or so, "I Am Autism."

carlos55 wrote:
Quote:
It’s worth looking at the petition that was organized as part of this effort. One part reads

Quote:
Autism is a neurodevelopmental and neurobiological disability that is not treatable or curable. It is not an illness or disease and most importantly, it is not inherently negative. Autistic people at Harvard and globally have advocated in the face of ableism to defend ourselves from such hateful, eugenicist logic.


This is, I think, nonsensical. It asserts that autism is a disability, a dis-ability, but also that it’s not an illness, a disease, or inherently negative. But the very concept of disability depends on the notion that disabilities are inherently negative. If they are not in some sense disabling, the term has no meaning. What’s more, the entire moral and legal logic that underpins the concept of reasonable accommodation - the affordances we make for people with disabilities, mandated by the Americans with Disabilities Act - depends on the idea that these things are both unchosen and harmful. If they’re not, then there’s no communal obligation to accommodate them. What would they even need accommodation for?

"Negative" is a vague word. If I were writing this petition, I think I would say something to the effect that autistic people are as deserving of basic human dignity as anyone else.

Also, given that resources are limited, too much focus on attempts at a "cure" does diminish attempts to gain accommodations for disabled people in the here-and-now.

For example, suppose all or most of the money donated to charities for blind people were poured into the search for cures for every conceivable cause of blindness, rather than into things like Braille texts, keyboards usable by blind people, instruction on how to navigate with a cane, etc. While research into cures and prevention of various causes of blindness does take place, it's not an overwhelming priority. If it were an overwhelming priority, then the lives of blind people would really suck while they were waiting for a cure, if they were able to survive at all during that time without the accommodations they have now. And the cure itself would likely be a mixed blessing at best, for a person who had been blind for one's entire life and whose brain developed without sight. Furthermore, due to the many different possible causes of blindness, it's unlikely that even a research budget of trillions of dollars per year would result in cures for all of them within the lifetimes of blind people living today.

Research into causes and cures of most other innate disabilities -- including deafness and even intellectual disability -- has never been an overwhelming priority either.

Only with autism was there enough of a panic for it to be treated as if it were cancer or some contagious disease. In the 1990's and early 2000's, there was a lot of fear-mongering about an alleged "autism epidemic" -- when in fact there was just an "epidemic" of autism diagnoses. What makes autism different from other innate disabilities is that its very existence, as a distinct category of disability, was not recognized until the 20th century.

And the fear-mongering about autism entailed a lot of dehumanizing rhetoric about autistic people.

carlos55 wrote:
Quote:
More, though, I cannot comprehend the arrogance of the woman who led the charge against the panel at Harvard, Kris King, to sit on her perch at the most exclusive university in the world and declare for the entire autistic community what autism is and means. It’s unsurprising that she’s disdainful of the need for treatment, given that she’s so high-functioning that she’s flourishing at an Ivy League university. She will never live the life that mother I knew lived. She will likely never care for someone whose autism has devastated them, robbed them of their ability to have conventional human relationships, to have a career, to be in love. Such debilitated people and their families will never have the cultural influence of a self-promoting Harvard student and so they’re simply read out of the conversation. Meanwhile autism activists and advocates make sweeping pronouncements about the lives of people they don’t know and could never understand.

Actually, I've seen quite a bit of discussion and controversy among autistic rights activists about how to be more inclusive of the more severely disabled autistic people, including nonspeakers and those with intellectual disability. It can certainly be argued that the autistic rights movement doesn't do enough for the most severely disabled autistic people, but the latter certainly have not been completely ignored.

For example, autistic rights activists and other disability rights activists are the main people objecting to the ill-treatment of severely disabled autistic people, e.g. at the Judge Rotenberg Center.

carlos55 wrote:
Quote:
“Autistic people at Harvard and globally have advocated in the face of ableism to defend ourselves,” she writes. In fact, Ms. King, globally there are millions of people whose autism ensures they can’t advocate at all. Spare a thought for them, while you’re busy framing your diploma.

More likely than not, she has already thought about them and advocated for them in at least some small way. I'd be surprised if she never signed a petition against the Judge Rotenberg Center, for example.

carlos55 wrote:
Quote:
In the years that followed my brief employment at the school district, the ideology that led to people like King was born. In the early 2010s

No, it was born back in 1993, in Don't Mourn for Us by Jim Sinclair. For some historical context, see History of Autism Network International and Historicizing Jim Sinclair’s “Don’t Mourn for Us”: A Cultural and Intellectual History of Neurodiversity’s First Manifesto.

Of course, it then took a couple of decades to percolate into mainstream discourse.

carlos55 wrote:
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In the early 2010s there was a flurry of interest in autism. Dozens of books and hundreds of essays were written about autism, almost all of which talked about it as a set of valuable personality quirks rather than as a disorder. In article after ponderous article, autism was described as a newer, perhaps better way of thinking, sometimes even a “new evolution” for the human species. Always, always, always, this navel-gazing fixated relentlessly on the highest-functioning people with autism. You could read tens of thousands of words in this genre without ever once being informed about the existence of those whose autism debilitates them. Whenever I read yet another article talking about how some high-achieving computer scientist saw their autism as the key to their success, I would think of those whose autism has prevented them from enjoying all manner of elements of human life. Where were those people in all of that hype?

These days at least, most neurodiversity activists don't talk like what is described in the above paragraph. The above sounds like an over-correction against the dehumanizing rhetoric of the previous few decades. These days, anyone who painted such an ultra-rosy picture of autism would be dismissed as an "Aspie surpremacist" by most autistic rights activists.

It is important to talk about the strengths that many autistic people have. But that's certainly not the sum total of autism.

carlos55 wrote:
Quote:
Will Tyler Cowen ever write a book about them? Are they ever going to appear on the cover of Forbes magazine or whatever the f**k? No. They have been replaced; in their stead, we have members of the striving classes whose autism has never prevented them from flourishing at everything they’ve ever tried. And since “autism is not a disorder” has become the enforced opinion, those whose autism plainly is a disorder have to be marginalized - by the very people who complain about the marginalization of the “neurodiverse.” Autism has been gentrified.

This is a dynamic I now cannot stop seeing: once a human attribute like autism or mental illness becomes seen as an identity marker that is useful for social positioning among the chattering class, the conversation about that attribute inevitably becomes fixated on those among that chattering class. It becomes impossible to escape their immense social gravity. The culture of that attribute becomes distorted and bent towards the interests and biases of those who enjoy the privilege of holding society’s microphone. Because you must be able to effectively communicate to take part in the conversation, and because all of the usual privileges of class and circumstance influence whose voice sounds the loudest, the discussion becomes just another playground for college-educated urbanites. To speak you must be able to speak, literally, and you must also enjoy the privileges of communicative competence and educated-class signaling mechanisms. So we will always tend toward a conversation that defaults to the interests of the least afflicted. This is inevitable; it’s baked into the system.

This is indeed a real problem, although Freddie deBoer exaggerates it in a way that plays into the hands of those who would dehumanize us.

carlos55 wrote:
Quote:
We could overcome this problem if the people in the arena were dedicated to fronting (excuse me, “centering”) the interests of the most afflicted. But we can’t have that. We can’t have that because contemporary disability ideology is obsessively fixated on telling people to center themselves. That is perceived to be the entirety of the work: every individual with a disability must demand that the world sees them as “valid,” that they are just as authentically disabled as anyone else, that their ADHD grants them perfectly equal priority in receiving accommodation as someone who’s paralyzed from the neck down. The whole social culture of disability activism and studies is leveraged to support the individual’s demand for attention and proper respect; it cannot countenance the notion that there are those who we should put before ourselves.

No. Of course the more severely disabled people have greater needs. No one denies this.

It is certainly true that people in general, including disability rights activists, naturally tend to center themselves. But disability rights activists do not do so on principle, and there are indeed attempts, however inadequate, to advocate for the more severely disabled people as well.

carlos55 wrote:
Quote:
And the obvious impulse to say that someone who faces total debilitation from their disorder should, in fact, be a higher priority for the medical and therapeutic communities is treated as the height of bigotry.

That's simply not true. There is, however, profound disagreement on how best to serve the needs of the more severely disabled autistic people.


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06 Jun 2022, 10:57 am

Mona Pereth wrote:
carlos55 wrote:
Quote:
In the early 2010s there was a flurry of interest in autism. Dozens of books and hundreds of essays were written about autism, almost all of which talked about it as a set of valuable personality quirks rather than as a disorder. In article after ponderous article, autism was described as a newer, perhaps better way of thinking, sometimes even a “new evolution” for the human species. Always, always, always, this navel-gazing fixated relentlessly on the highest-functioning people with autism. You could read tens of thousands of words in this genre without ever once being informed about the existence of those whose autism debilitates them. Whenever I read yet another article talking about how some high-achieving computer scientist saw their autism as the key to their success, I would think of those whose autism has prevented them from enjoying all manner of elements of human life. Where were those people in all of that hype?

These days at least, most neurodiversity activists don't talk like what is described in the above paragraph. The above sounds like an over-correction against the dehumanizing rhetoric of the previous few decades. These days, anyone who painted such an ultra-rosy picture of autism would be dismissed as an "Aspie surpremacist" by most autistic rights activists.

It is important to talk about the strengths that many autistic people have. But that's certainly not the sum total of autism.

I spend a lot of time looking for things to put in this section. What is being described is the common autism portrayal in the mainstream media and it is an overcorrection to the pre 2010 “I am Autism” type portrayals. With shows such as “As We See It” and “Everything is gonna be Ok” we do see attempts at more realistic and nuanced portrayals.

I have been here almost 9 years. Truly supremacist views have always been here and have always been a small minority. When I first got here the “differently abled” description was common. I do not see that awkward term being used these days as well as the “just gifts” view of autism behind it much nowadays.

What to my disappointment I have not seen change is the perception of ND movement as harmful clueless elitists.

Getting a little more PPR while I find the authors views offensive in no way should cancellation happen. Colleges are supposed to be about being exposed to views different then yours. Harvard as one of the most well known and respected schools should set an example. The author is not irredeemable. He is open to having autistic input. Please give it to him. If this is allowed to happen his views will likely evolve. While they will never likely be what ND activists like that would still represent progress. Learning that you can’t get 100 percent what you want should have been taught well before college but it is never too late.


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06 Jun 2022, 11:08 am

I think trying to pretend that level 3 autism doesn't exist and that being autistic just means being socially awkward and thinking and learning different is ableism itself because they are trying to shut out those who are severely impacted by it and will never live a functional life and will always need help with daily living like bathing and going to the toilet, getting dressed, feeding.


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06 Jun 2022, 11:17 am

League_Girl wrote:
I think trying to pretend that level 3 autism doesn't exist and that being autistic just means being socially awkward and thinking and learning different is ableism itself because they are trying to shut out those who are severely impacted by it and will never live a functional life and will always need help with daily living like bathing and going to the toilet, getting dressed, feeding.

I agree that the autism is just being awkward and different is ableist but disagree that it means the person being described as severely autistic will always be completely dependent. Some will. One important way to ensure that bad outcome is to assume that bad outcome.


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07 Jun 2022, 6:08 am

What the author was getting at was there are many in the ND movement who want to drown the voices of those who are more disabled and substitute them for a more public friendly image of the condition, thus behaving like in the old days when the mentally disabled were taken away as children locked up and never seen again.

One way is to attempt to disenfranchise them from the autistic community by somehow pretending their symptoms are not autism but something else.

They pretend autism itself is clearly mapped out as a benevolent difference when in reality little scientifically is known about autism and how it relates to other issues like ID for example.

Clearly that is also a failure of science, with at present not being able to map out the various autism(s) and their impact on the individual so the world lazily uses that 1940`s word “autism” as a catchword diagnosis for Neurodevelopmental Disorders science doesn’t understand yet where an adult someone can have the brain of a 3-year-old or be a genius.

The author says something I’ve been saying for a long time - the negative end result of all this suppressing of truth, the needs of more disabled autistic people will be abandoned, many will probably die early one way or other as a result.

Quote:
disability depends on the notion that disabilities are inherently negative. If they are not in some sense disabling, the term has no meaning. What’s more, the entire moral and legal logic that underpins the concept of reasonable accommodation - the affordances we make for people with disabilities, mandated by the Americans with Disabilities Act - depends on the idea that these things are both unchosen and harmful. If they’re not, then there’s no communal obligation to accommodate them. What would they even need accommodation for?


All these so-called accommodations that many seek why would any government spend money on autistic people if the condition is not regarded as a disability?. Are their no elderly people, other disabled people or more deserving causes not out there to spend a limited budget on than those just different?

Everyone`s different so autism is no different to anyone else? so they can join everyone else at the back of the extra long queue? so the collective societal logic will go.


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09 Jun 2022, 1:05 am

League_Girl wrote:
I think trying to pretend that level 3 autism doesn't exist and that being autistic just means being socially awkward and thinking and learning different is ableism itself because they are trying to shut out those who are severely impacted by it and will never live a functional life and will always need help with daily living like bathing and going to the toilet, getting dressed, feeding.

But who, exactly, is "trying to pretend that level 3 autism doesn't exist"? Certainly not the mainstream of the autistic rights movement.


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09 Jun 2022, 6:10 am

Mona Pereth wrote:
League_Girl wrote:
I think trying to pretend that level 3 autism doesn't exist and that being autistic just means being socially awkward and thinking and learning different is ableism itself because they are trying to shut out those who are severely impacted by it and will never live a functional life and will always need help with daily living like bathing and going to the toilet, getting dressed, feeding.

But who, exactly, is "trying to pretend that level 3 autism doesn't exist"? Certainly not the mainstream of the autistic rights movement.


Well John Marble for a start in 2009, he was appointed by President Obama to the United States Office of Personnel Management. So not just some blogger in his basement. There are other sites i have seen such comments, but i never bothered saving them at the time.

According to John Marble severe disability doesn`t exist or at least its not autism. So i guess that disenfranchises large % of autistic people including the 30-40% with ID.

https://twitter.com/jhmarble/status/916 ... lang=en-GB

Tom Clements related article:

https://www.ncsautism.org/blog//censori ... disability


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09 Jun 2022, 4:59 pm

I think the vast 'middle' , including myself, gets sidelined when it comes to our needs being met .In my case,to be honest, whether sidelined or not it would make little difference . The damage has been done , and I have to live as best I can with how things are as opposed to how they could/should have been. It's not always easy doing so though.

However those decades younger than me,and part of that vast 'middle' are not beyond being helped . For that to happen they shouldn't be sidelined. I don't want them to end up like me. I want better for them than that.


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09 Jun 2022, 5:04 pm

Am I to understand that it's fashionable now to say you have some "bespoke" disability to discuss on social media?



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19 Jun 2022, 7:33 pm

To be fair I think most lung adults are absolutely lazy and taught to be ok with who they are.

Parents fail to realize that autism and the behaviours that are considered mal adaptive will never be acceptable. It isn't like race were intrinsic bias can be somewhat mitigated. The experience most people have of someone that is " other " is typically poor and when everything you have screams other , it is extremely hard to override people's nature wiring.

I think most of these cases could be non issues if parents were just more qualified. You have to essentially prepare a child in a way that requires discipline about 1.5 times as much effort but if you don't attack it , nip it in the bud , then get a bunch of adults that are not wanted but have been lies to their entire lives that being different is valued.

Being different and liked assumes you maintain a healthy proximity to the centre of that u curve for what we will tolerate.

Fitting in is the goal. It's going to be hard as it is but the way these parents do their kids a giant disservice by letting them be their diagnosis.



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20 Jun 2022, 2:51 am

So my understanding of gentrification is that disability has become somehow normalised and even fashionable (like inner city urban). I really don't think that's the case. Perhaps this word is misleading.



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20 Jun 2022, 3:23 am

cyberdad wrote:
So my understanding of gentrification is that disability has become somehow normalised and even fashionable (like inner city urban). I really don't think that's the case. Perhaps this word is misleading.


I believe he`s saying an unfortunate consequence in de stigmatising mental health is the worst parts have become sanitized so out of public view.

If they are out of public view these people get forgotten about and their needs tend not to be met as they remain unknown.

So, differences and superpowers in, self-harm, mental health lock up and ID out.

As far as the public awareness is concerned which leads to these people being forgotten about that has consequences explained.


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