Every negative stereotype of ND advocates in one column

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ASPartOfMe
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07 Apr 2024, 11:35 am

Rose Baumann is a Washington County parent advocate and fulltime caregiver for her adult son with profound autism.

Lynn Johnson, who has twice been a Pulitzer Prize finalist, has worked for LIFE, Sports Illustrated, and National Geographic Magaine, in which she has published 40 feature stories.

Misunderstanding autism: It’s not just a different way of being Pittsburgh Post-Gazette

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As we leave behind the capricious days of March for the hope of True Spring in April, members of the autism community prepare to commemorate Autism Awareness/​Acceptance Month. Like many “awareness” months, April has been officially recognized by state and national leaders as a time to acknowledge a disorder and a population that has historically been misunderstood, mistreated, and misrepresented.

Unfortunately, there is a movement afoot within the autism community that might abolish the need for an Autism Awareness/​Acceptance month altogether. The growing population of neurodiversity advocates seem to be mainly autistic self-advocates with low support needs, plus scores of self identified autistics, many of whom get their diagnostic authority from Tik-Tok videos or “You might be autistic if” quizzes online.

If they continue to tell the world that autism is not a disorder, the official keepers of the World Awareness Calendar can reassign the month of April to another cause.

The shift in narrative
For those with profound autism, a group the U.S. Centers for Disease Control estimates at approximately 27% of the entire autism population, this shift in the narrative from autism-as-a-disorder to autism-as-just-another-way-of-being has done considerable harm.

Their needs must be elevated rather than dismissed. Without awareness of the struggles profoundly autistic individuals and their caregivers face, there will continue to be a lack of public policy, research, and support services to adequately address their significant needs.

The notion that autism is not a disorder, and therefore no treatment or cure is needed, lies at the center of the neurodiversity argument. It is an argument which, by the way, is often articulated by well-spoken autistic self-advocates who are living successfully in the community.

Not only is this giving the general public a skewed view of the clinical presentation of autism, but it is influencing government policy at all levels. The Interagency Autism Coordinating Committee, a cross-agency committee that advises the U.S. Secretary of Health and Human Services on matters related to autism, for example, has jumped on the neurodiversity bandwagon.

The IACC has begun sanitizing the language they use in their communications, softening the clinical descriptors that have been the defining characteristics of autism for decades to make them more agreeable to neurodiversity advocates. Descriptors like “self-injurious behavior,” “co-morbidities,” and even seemingly benign phrases such as “at risk” and “prevention and treatment” are being scrubbed from documents and dialog.

Even the very diagnostic labels used to differentiate the levels of severity of autism spectrum disorders are being called into question by some neurodiversity advocates.

Esteemed organizations like the Lancet Commission, which utilized the diagnostic label “profound autism” in a 2022 report, have been called out by the neurodiversity language police who claim that there is no such thing as profound or severe autism. The American Psychiatric Association’s use of levels 1, 2, and 3 in the latest version of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5) to delineate symptom severity and support levels within the autism spectrum has been rejected by some advocates as unnecessary and discriminatory.

I beg to differ
As a parent of a profoundly autistic young adult son, I beg to differ.

No other descriptor besides “profound” is sufficient to describe the things my son struggles with on a regular basis: self-injurious behavior that is so pervasive he wears a protective helmet 24x7 to prevent brain trauma and facial fractures; spikes in aggression that can come out of nowhere, causing property damage and injury to those in his path; anxiety that can trigger incidents of elopement from the home or, worse, a moving vehicle; and communication difficulties that prevent him from telling anyone when he hurts, what he fears, or who may have harmed him (an occurrence that is far too common amongst individuals with profound autism).

And our family is not alone. Across Pennsylvania, there are hundreds, perhaps thousands, of individuals who struggle with this purportedly “nonexistent” form of autism. Families like my friend Donna’s whose young adult son’s autistic rages have sent school staff to the Emergency Room with concussions and have resulted in transportation companies refusing to drive him to school because of his aggression while in transit.

And families like my friend Kelly’s, who live in one of Pennsylvania’s many rural communities where services for individuals with disabilities are scarce but, for her son, are unobtainable due to his severe behaviors. He is a young man with such intractable OCD that visitors must immediately remove their hats (or he will remove them, and not gently), presumably because heads should not be covered.

His many sensory issues mean that Kelly is unable to cook while he is awake because he can’t tolerate a lit stove. The windows in Kelly’s home are covered with plexiglass to protect the windows, and her son, from his penchant for headbutting.

Unforgettable realities
There is resplendence and joy on this end of the spectrum, to be sure. The youth who knocked the fireplace mantle out of the wall with his shoulder has curated an eclectic iTunes playlist that any avid music lover would envy. The one who requires a dose of ketamine just to get through a routine blood draw is also the young man who will press his cheek to his mother’s in a rare moment of calm and ask her to speak softly into his ear.

We cherish these qualities and moments, but we can never forget the realities of profound autism. It is a disorder, despite what those currently holding the mic claim, and it is one for which families like Kelly’s and Donna’s and mine will never stop seeking treatment and interventions.

Words matter, and when we don’t use them to accurately describe the clinical symptoms of a disorder that is as inherently debilitating and life-limiting as profound autism, we take political correctness to a dangerous and irresponsible level.

The old but so persistent false claim that ND advocates do not want treatments yet again.

ND advocates not wanting acceptance month is wrong because it was their idea sort of. What they have advocated with some degree of success is changing “awareness” to “acceptance” month. She mentioned she favors “at risk”. ND advocates do not like that terminology as well as “awareness” it implies we are something to fear. Cancer patients are not seen as people to fear because unlike autism it is a physical condition not mostly genetic. “Risk” is a negative word. We don’t say a couple is at risk of having a long successful marriage.

ND advocates do hope to see the day Autism awareness month is not needed. Would that not be true of people who want cures and prevention?

In my over 10 years here I have never heard even from the most die hard Aspie supremacists that severe autistics do not exist. Maybe projection from the authors? I say that because of her line about tik tok diagnosing. While I am a strong advocate against tik tok diagnosing that line is all about implying ND advocates as a group are not autistic.

I agree with her that sometimes ND advocates are too “politically correct” advocating changing language to wording that favors avoiding hurting feelings over accurately describing. I say two things to that. 1. Welcome to the club 2. Her whole column is advocating language policing.

I understand that these days “high support needs” are favored over “severe” and especially “profound” because the latter has been weaponized. Sometimes I still use the disfavored words because one word is easier to write then three and because I was introduced to them as descriptors not slurs. A decade ago we had a user named KingdomOfRats whom I admired who described herself as “severe”. Author Steve Silberman who is anything but a rank ableist often used “profound”.


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07 Apr 2024, 2:45 pm

Sigh...

Again and again and again; what makes the autism profound? Do they actually know?


Is their autism truly profound, that they are indeed trapped in an overwhelmed and unreliable body? THEY need treatments to make lives easier and accessible.

Or, their autism is not truly profound; that whoever is piloting the body has intellectual disabilities and cannot handle the autism that is not necessarily profound?
One can only make this person's life easier and more comfortable, but it will go nowhere but quality of life; avoiding meltdowns for one.


Research of profound autism? Fine.

Research to distinguish what does 'profound autism' means other than "nonverbal", "had to be hand fed and being in diapers", "aggressive" and whatever constitutes as 'tested as low IQ'.

Are those with profound autism are autistics with profound autism or intellectually disabled autistics that do not necessarily have profound autism?

I could care less if their support needs are the same.
I'd rather have that question asked. :roll: Preferably answered.


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carlos55
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08 Apr 2024, 7:28 am

Edna3362 wrote:
Sigh...

Again and again and again; what makes the autism profound? Do they actually know?


Is their autism truly profound, that they are indeed trapped in an overwhelmed and unreliable body? THEY need treatments to make lives easier and accessible.

Or, their autism is not truly profound; that whoever is piloting the body has intellectual disabilities and cannot handle the autism that is not necessarily profound?
One can only make this person's life easier and more comfortable, but it will go nowhere but quality of life; avoiding meltdowns for one.


Research of profound autism? Fine.

Research to distinguish what does 'profound autism' means other than "nonverbal", "had to be hand fed and being in diapers", "aggressive" and whatever constitutes as 'tested as low IQ'.

Are those with profound autism are autistics with profound autism or intellectually disabled autistics that do not necessarily have profound autism?

I could care less if their support needs are the same.
I'd rather have that question asked. :roll: Preferably answered.


When they use the term profound autism they are referring to these types of people

https://m.youtube.com/watch?v=j4PTf7LgsIE

Anyone claiming this person didn’t have a disorder would have to be high on LSD or have a level of ignorance beyond help.

So why should this mother be told she has to “accept” her son’s condition as normal why would she celebrate her son’s condition?

Autism is a spectrum of severity get over it

In the absence of proper diagnostic mapping and sub categories acceptance is an inappropriate word for a disorder that destroys many people’s lives.

By all means accept autistic people but not accept the disorder itself two different things.

ND advocates should be concentrating their efforts for more research to sub categorisation of autism then they can then go ahead and campaign on a re think of the type of autism they think should be a natural difference rather than alienating many autistic people and gas lighting the public by claiming the sky is green


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08 Apr 2024, 9:54 am

There are non-autistic people with intellectual disabilities that have a high need of support and that behave in a dangerous way to themselves and others. So why is it so hard to understand that autistic people with intellectual disabilities will have more severe problems than highly intelligent ones that are equally autistic? Of course an intellectually disabled person with (or without) autism deserve a lot of support. But just because somebody is autistic you can't blame every problem they have on autism!


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08 Apr 2024, 2:51 pm

BillyTree wrote:
There are non-autistic people with intellectual disabilities that have a high need of support and that behave in a dangerous way to themselves and others. So why is it so hard to understand that autistic people with intellectual disabilities will have more severe problems than highly intelligent ones that are equally autistic? Of course an intellectually disabled person with (or without) autism deserve a lot of support. But just because somebody is autistic you can't blame every problem they have on autism!


Autism at the moment is just a few paragraphs of the DSM that need to be fulfilled to get a diagnosis.

There is nothing behind that piece of paper on a clip board no blood test no 100% genetic test nothing.

Even where there is genetic evidence to a condition like 15q11.2 deletion, it’s not the full picture as some of those genetic conditions don’t have autism 100% of the time.

Even the paper diagnostic paragraphs are a fluctuating thing many experts believe dexterity issues should be included but so far they are not but maybe in the future they will.

Nobody knows what is autism exactly this has so far been not been mapped.

Ellon musk claims he has autism but he is very tallented with what looks like zero support needs. This is clearly a difference from me or maybe you so who has the autism? Who has something else?

Do we have even the same biological condition so far there is no evidence to say we do anymore than cateracts and glaucoma are the same to a 13th century doctor

The original autism of the 20th century had ID as part of the condition in most cases. It was not until 1994 Asperger’s came back and not until 2013 it all became one spectrum.

So in a contest of who got here first to lay claim to autism those with severe autism win by many decades.

About 45% of autistic adults have ID ( 33% 8 year olds + 50% formally borderline at 8 once aged 18 ) Leaving aside other things on top like seizures and mental health etc. So there is a serious relationship there that cannot be ignored

The same relationship doesn’t exist by chance like with brown hair or other attributes so that cannot be separated or put in different boxes biologically like an alphabet soup of labels.

The same is true for many mental health or brain conditions that have a statistically strong relationship that cannot be ignored

Even if people wanted to be a paper diagnosis maximalist and treat the paragraphs that are in the 2013 DSM 5 as a sacred text burned in stone by god on mount Sini as an immoveable fixed object they are still nothing to celebrate.

I have communication problems and have stimms that get in the way of my life and sometimes have put me in personal danger, yippee let’s celebrate.

Little Johnny can’t talk at 10 or have relationships with his peers let’s open the champagne.

To many people acceptance of what they suffer from or celebration is inappropriate or worse an insult like a sick joke aimed at them.


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08 Apr 2024, 3:54 pm

carlos55 wrote:
So in a contest of who got here first to lay claim to autism those with severe autism win by many decades.

I don't see the point of having a contest. But I find it insulting when people are questioning if Elon Musk is actually autistic. I don't share his view on politics etc but to me he is clearly autistic in pretty much the same way I am. He's highly intelligent and is successful in many ways but that doesn't mean people like him doesn't have to work a lot harder than "normal people" to navigate this world. And autism is just a name. If people with "severe autism" want to claim it because they were diagnosed first it's alright with me. As long as my brand of autism is recognized as a neurodivergent variation people can call it whatever they want. But when it was called Asperger people complained about that.


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09 Apr 2024, 2:50 am

carlos55 wrote:
Edna3362 wrote:
Sigh...

Again and again and again; what makes the autism profound? Do they actually know?


Is their autism truly profound, that they are indeed trapped in an overwhelmed and unreliable body? THEY need treatments to make lives easier and accessible.

Or, their autism is not truly profound; that whoever is piloting the body has intellectual disabilities and cannot handle the autism that is not necessarily profound?
One can only make this person's life easier and more comfortable, but it will go nowhere but quality of life; avoiding meltdowns for one.


Research of profound autism? Fine.

Research to distinguish what does 'profound autism' means other than "nonverbal", "had to be hand fed and being in diapers", "aggressive" and whatever constitutes as 'tested as low IQ'.

Are those with profound autism are autistics with profound autism or intellectually disabled autistics that do not necessarily have profound autism?

I could care less if their support needs are the same.
I'd rather have that question asked. :roll: Preferably answered.


When they use the term profound autism they are referring to these types of people

https://m.youtube.com/watch?v=j4PTf7LgsIE

Anyone claiming this person didn’t have a disorder would have to be high on LSD or have a level of ignorance beyond help.

So why should this mother be told she has to “accept” her son’s condition as normal why would she celebrate her son’s condition?

Autism is a spectrum of severity get over it

In the absence of proper diagnostic mapping and sub categories acceptance is an inappropriate word for a disorder that destroys many people’s lives.

By all means accept autistic people but not accept the disorder itself two different things.

ND advocates should be concentrating their efforts for more research to sub categorisation of autism then they can then go ahead and campaign on a re think of the type of autism they think should be a natural difference rather than alienating many autistic people and gas lighting the public by claiming the sky is green

I shall say it again -- I do not give a damn even if both have the same support needs.

If there's a categorization of which is the most appropriate treatments -- one had to distinguish between 'profound autism' because they have intellectual disabilities; or 'profound autism' because their autism is profound.

The former have no choice. Treat the autism, remain intellectually disabled still.
The latter has a chance with the right amount of accommodation and treatment.

Else, condemn every autistic who had a choice to function in life, all under the assumption that they're no different from autistics with intellectual disabilities.

Why teach them skills? Why give them therapy?
Who is to say which 'profound autistics' may improve with time?

Else, condemn every autistic whose childhood started out as 'profound' and then stay 'profound'. :roll: Nevermind their potential autonomy.

Just like those had who ended up institutionalized and never able to leave all because of the assumption that they have 'severe autism'.


The worst case scenario? Virtual "profound autism" may already exists.

Oh, except -- they're not really autistic; in which how virtual autism works.
They're NTs that mimics autistic traits and their developmental trajectory went on a hard turn...

With what, how people socialize and use technology these days? :lol:
I don't think it's as easy as to tease technological addictions affecting cognitive processes mimicking autism; like how CEN (childhood emotional neglect) does with mimicking autism.


Wanna condemn potential NTs into the label of 'profound autism'? Screw little Johnny -- he shouldn't exists. :lol:



As for advocates themselves?
I say they're a joke around these times. Especially if the source came from, say, Tiktok or Twitter.

If the content is less about educating and precautions; and too much emphasis on representation and depictions fiction -- it is no wonder the ignorant stereotype exists.

I say, find a way to go past this; along with other intersectionalities.

Likely full of teens and young adults who never felt belonging -- likely are NTs with social anxiety; self diagnosed and mistaken themselves as autistic simply because they can relate.
Conversely, misdiagnosed autistics dismissed as an NT with social anxiety. :lol:


There are more immediate matters than fighting over the internet culture.


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09 Apr 2024, 8:37 am

carlos55 wrote:

When they use the term profound autism they are referring to these types of people

https://m.youtube.com/watch?v=j4PTf7LgsIEn


I got around today to watch this. What this mother has to deal with is really difficult for her. She needs support and help. She seems to be very stressed out but her son deserves to be treated and supported in an other more calm way than she exhibits here. That said, there is no excuse to expose her son like this in a you tube clip. Is that even legal?


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09 Apr 2024, 2:02 pm

BillyTree wrote:
carlos55 wrote:

When they use the term profound autism they are referring to these types of people

https://m.youtube.com/watch?v=j4PTf7LgsIEn


I got around today to watch this. What this mother has to deal with is really difficult for her. She needs support and help. She seems to be very stressed out but her son deserves to be treated and supported in an other more calm way than she exhibits here. That said, there is no excuse to expose her son like this in a you tube clip. Is that even legal?


LOL course its legal he`s an adult and his legal guardian (mother consented) Its a tv clip news report for the purpose of raising awareness and information.

Adults with severe mental disabilities like severe autism & dementia are regularly on TV doc & news reports, even louis theroux did one

Of course many in the ND movement would like such people hidden away out of sight like the old days, wouldn't want it ruining their narrative i guess

Here`s another adult with severe autism- 6.20( BBC news report )

https://www.youtube.com/watch?v=puhlYl9W1Dw


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10 Apr 2024, 1:03 pm

carlos55 wrote:
BillyTree wrote:
carlos55 wrote:

When they use the term profound autism they are referring to these types of people

https://m.youtube.com/watch?v=j4PTf7LgsIEn


I got around today to watch this. What this mother has to deal with is really difficult for her. She needs support and help. She seems to be very stressed out but her son deserves to be treated and supported in an other more calm way than she exhibits here. That said, there is no excuse to expose her son like this in a you tube clip. Is that even legal?


LOL course its legal he`s an adult and his legal guardian (mother consented) Its a tv clip news report for the purpose of raising awareness and information.

Adults with severe mental disabilities like severe autism & dementia are regularly on TV doc & news reports, even louis theroux did one

Of course many in the ND movement would like such people hidden away out of sight like the old days, wouldn't want it ruining their narrative i guess

Here`s another adult with severe autism- 6.20( BBC news report )

https://www.youtube.com/watch?v=puhlYl9W1Dw

That's exposing people in a vulnerable situation for no benefit at all. People that need to know already know. I have worked with people like these in the videos in different settings like group homes or special needs schools for over 20 years. I don't se how anything showned in these videos supports your arguments about autism or how it could be threath to the neurodiversity movement. I think these videos are hurtful. People with no knowledge about autism will not get a better understanding of these individuals with a high support need but will probably see them as monsters or freaks.


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10 Apr 2024, 2:51 pm

BillyTree wrote:
carlos55 wrote:
BillyTree wrote:
carlos55 wrote:

When they use the term profound autism they are referring to these types of people

https://m.youtube.com/watch?v=j4PTf7LgsIEn


I got around today to watch this. What this mother has to deal with is really difficult for her. She needs support and help. She seems to be very stressed out but her son deserves to be treated and supported in an other more calm way than she exhibits here. That said, there is no excuse to expose her son like this in a you tube clip. Is that even legal?


LOL course its legal he`s an adult and his legal guardian (mother consented) Its a tv clip news report for the purpose of raising awareness and information.

Adults with severe mental disabilities like severe autism & dementia are regularly on TV doc & news reports, even louis theroux did one

Of course many in the ND movement would like such people hidden away out of sight like the old days, wouldn't want it ruining their narrative i guess

Here`s another adult with severe autism- 6.20( BBC news report )

https://www.youtube.com/watch?v=puhlYl9W1Dw

That's exposing people in a vulnerable situation for no benefit at all. People that need to know already know. I have worked with people like these in the videos in different settings like group homes or special needs schools for over 20 years. I don't se how anything showned in these videos supports your arguments about autism or how it could be threath to the neurodiversity movement. I think these videos are hurtful. People with no knowledge about autism will not get a better understanding of these individuals with a high support need but will probably see them as monsters or freaks.


If the narrative was to ridicule or entertainment then maybe yes

But I don’t see how an information film showing severely disabled adults how they are practically all the time are hurtful rather than informative.

Its understandable that people see the first video as shocking which it is and shows a adult human being in a wretched permanent state, but that is on his good day. You have to remember his mother described one of his bad days of destruction which you didn’t see.

Its not much different showing someone with dementia or other mental health condition. Unpleasant but the public need to know for information, the alternative is locking people away never to be seen or false narratives being created leading to people thinking such people don’t exist, leading to those who care for them not getting support.

I mentioned the word paper maximalists, the various conditions ASD, ADHD, SPD, ID & LD etc.. were split up on paper because its easier to deal with these things separately by psychologists and to treat people.

Maybe the person with ASD & ADHD would do well with ADHD drugs, maybe there is some therapy for the autistic with OCD, maybe there`s a new learning tool available for people with Learning Disorder.

But the real world or biological world doesn’t work like that in genes and the body is interconnected.

The same genes that cause autism in some also cause ID in some. Some genes that cause ID cause different facial features like in Fragile X.

If you look up any different gene names & faults you`ll see multiple impacts on all over the body

Multiple autisms or not even that, multiple conditions that have autism as a symptom


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10 Apr 2024, 4:16 pm

carlos55 wrote:

Multiple autisms or not even that, multiple conditions that have autism as a symptom


On this I agree. At this point the diagnosis autism is a symtom - like "chest pain". A neurological and developmental disorder where some affected have an 150 IQ and win the Nobel Prize while others is intellectually disabled and have to live in an institution with 24 h support exhibits an extremely broad spectrum. It's hard to believe that it is the same underlying condition that has such different outcomes.
But my point is that as long as you have the symtoms and qualify for a diagnosis you have the same right to claim your autism as anyone else. You don't get a diagnosis without having problems. People that are described as "high functioning" have real problems, maybe not for being disabled in a traditional way, but for being different and acting weird or being labeled as rude. Autistics without a learning disability have a 9 times higher suicid rate than the rest of the population. So it's not all champagne and sunshine on that side of the spectrum. I don't think people are celebrating getting a diagnosis like they won a prize or like it's a badge of honour. I think they are happy for getting an explaination for their problems and a validation that they are not a failed or lazy person that could have done better if they only had tried a little bit harder.


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11 Apr 2024, 1:23 am

BillyTree wrote:
carlos55 wrote:

Multiple autisms or not even that, multiple conditions that have autism as a symptom


On this I agree. At this point the diagnosis autism is a symtom - like "chest pain". A neurological and developmental disorder where some affected have an 150 IQ and win the Nobel Prize while others is intellectually disabled and have to live in an institution with 24 h support exhibits an extremely broad spectrum. It's hard to believe that it is the same underlying condition that has such different outcomes.
But my point is that as long as you have the symtoms and qualify for a diagnosis you have the same right to claim your autism as anyone else. You don't get a diagnosis without having problems. People that are described as "high functioning" have real problems, maybe not for being disabled in a traditional way, but for being different and acting weird or being labeled as rude. Autistics without a learning disability have a 9 times higher suicid rate than the rest of the population. So it's not all champagne and sunshine on that side of the spectrum. I don't think people are celebrating getting a diagnosis like they won a prize or like it's a badge of honour. I think they are happy for getting an explaination for their problems and a validation that they are not a failed or lazy person that could have done better if they only had tried a little bit harder.


Yes agree 100% , although don’t think it’s the newly diagnosed behind all the crazy stuff that gets pushed out there.


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11 Apr 2024, 12:04 pm

carlos55 wrote:
BillyTree wrote:
carlos55 wrote:

Multiple autisms or not even that, multiple conditions that have autism as a symptom


On this I agree. At this point the diagnosis autism is a symtom - like "chest pain". A neurological and developmental disorder where some affected have an 150 IQ and win the Nobel Prize while others is intellectually disabled and have to live in an institution with 24 h support exhibits an extremely broad spectrum. It's hard to believe that it is the same underlying condition that has such different outcomes.
But my point is that as long as you have the symtoms and qualify for a diagnosis you have the same right to claim your autism as anyone else. You don't get a diagnosis without having problems. People that are described as "high functioning" have real problems, maybe not for being disabled in a traditional way, but for being different and acting weird or being labeled as rude. Autistics without a learning disability have a 9 times higher suicid rate than the rest of the population. So it's not all champagne and sunshine on that side of the spectrum. I don't think people are celebrating getting a diagnosis like they won a prize or like it's a badge of honour. I think they are happy for getting an explaination for their problems and a validation that they are not a failed or lazy person that could have done better if they only had tried a little bit harder.


Yes agree 100% , although don’t think it’s the newly diagnosed behind all the crazy stuff that gets pushed out there.

Personally I was the most “militant” in the months after diagnoses. Looking back overcompensation for low self esteem. As I became aware of and opposed to cancel culture/wokeness I came to realize that in some ways I was thinking the same way as those I was criticizing.

If not the newly diagnosed who is behind the crazy stuff?


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Edna3362
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11 Apr 2024, 2:33 pm

ASPartOfMe wrote:
carlos55 wrote:
BillyTree wrote:
carlos55 wrote:

Multiple autisms or not even that, multiple conditions that have autism as a symptom


On this I agree. At this point the diagnosis autism is a symtom - like "chest pain". A neurological and developmental disorder where some affected have an 150 IQ and win the Nobel Prize while others is intellectually disabled and have to live in an institution with 24 h support exhibits an extremely broad spectrum. It's hard to believe that it is the same underlying condition that has such different outcomes.
But my point is that as long as you have the symtoms and qualify for a diagnosis you have the same right to claim your autism as anyone else. You don't get a diagnosis without having problems. People that are described as "high functioning" have real problems, maybe not for being disabled in a traditional way, but for being different and acting weird or being labeled as rude. Autistics without a learning disability have a 9 times higher suicid rate than the rest of the population. So it's not all champagne and sunshine on that side of the spectrum. I don't think people are celebrating getting a diagnosis like they won a prize or like it's a badge of honour. I think they are happy for getting an explaination for their problems and a validation that they are not a failed or lazy person that could have done better if they only had tried a little bit harder.


Yes agree 100% , although don’t think it’s the newly diagnosed behind all the crazy stuff that gets pushed out there.

Personally I was the most “militant” in the months after diagnoses. Looking back overcompensation for low self esteem. As I became aware of and opposed to cancel culture/wokeness I came to realize that in some ways I was thinking the same way as those I was criticizing.

If not the newly diagnosed who is behind the crazy stuff?

I see it as some sort of phase that anyone can outgrow out of or shift from with enough real life experience, and had gone through layers of realizations and emotional healing.

According to my years of experience and reading years worth of accounts; not necessarily in order; there are those who are just on the sidelines (lurkers with no real opinions and are likely the silent majority), there are those who are grieving and in self loathing wishing for a cure and a normal life (all negative, no positive) or a world that only we're in it (exclusionist neutral that may think their autism is the only autism), there are those who is in a pit of depression or helplessness (mostly consists or cannots or whining), if not anxiety and self esteem issues (wanting assurance and validation), then there's the lonely souls in a particular social and identity phase (those who want to feel like they belong; they're likely the visible majority which is a major phase on where they may end up as an active online participant), there are those who are compensating and turning to conditional acceptance (all positive, no negatives prone to supremacy), then there are those who are attempting radical acceptance yet hadn't sink in what it meant yet, then there are those who did and understands how autism is both a disability and a difference that both are valid (a level that most true advocates are at), then there's stages that goes beyond all that and sees how much of a waste of time arguing online and knowing if they have the power to change their locales or not (that their opinion is more than just mere ideologies and mental play thing)...


So yeah.
I see identity politics as some teenager's thing. Or an equivalent of it.

Yes, they can be so annoying. Potentially create problems that do not exists -- but that's because there's no one to debunk it.
Yet it cannot be helped.

But it's a particular developmental stage over one's perception and relationship of autism (or any forms of intersectionality can apply along with it).

When one knows enough, one can choose to stay and aide a side or not.

I don't think there's a huge conspiracy over it. I just see it as something... Natural. Collectively. Predictively.

On how it is perpetuated;
Just echoes (copy pasting something cool maybe something viral or someone paid a huge ad for it -- does not guarantee audience reaction) and may depend how and which narrative was spread and approved; whether refine it (like how awareness becomes acceptance) or twist it (like how polarizations about superpowers and being a burden is yelled).

Or at least that particular "developmental stage" (not necessarily age) holds the voice to this particular matter.
It's a stage where most people are easily swayed, easily provoked.

Stages where they're easily provoked. Both wanting validation and assurance. Both are so vulnerable, both are playing defense or offense; fight, flight all the same.
Advocates and 'parents' on both grieving and seeking assurance stages, on stages that they want to be accommodated and supported.

That either's opinions hurts and invalidates them. Thus wanting to discredit one or the other.
Little empathy and collaboration in between them. Both are complaining how hard it is to live XYZ because of ABC.


I can confidently say that even with a willful collaboration and both sides on past those stages -- it's hard. Both can be so scared and tense over it.

Going trauma informed is not even easy. On top of teaching certain concepts and where one and the other are coming from.

Let alone in a less moderated online spaces.

Thus a lot of bullies, a lot ot crying... :lol:
Fighting behind the screen and keyboards.


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Last edited by Edna3362 on 11 Apr 2024, 2:59 pm, edited 2 times in total.

carlos55
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11 Apr 2024, 2:48 pm

ASPartOfMe wrote:
carlos55 wrote:
BillyTree wrote:
carlos55 wrote:

Multiple autisms or not even that, multiple conditions that have autism as a symptom


On this I agree. At this point the diagnosis autism is a symtom - like "chest pain". A neurological and developmental disorder where some affected have an 150 IQ and win the Nobel Prize while others is intellectually disabled and have to live in an institution with 24 h support exhibits an extremely broad spectrum. It's hard to believe that it is the same underlying condition that has such different outcomes.
But my point is that as long as you have the symtoms and qualify for a diagnosis you have the same right to claim your autism as anyone else. You don't get a diagnosis without having problems. People that are described as "high functioning" have real problems, maybe not for being disabled in a traditional way, but for being different and acting weird or being labeled as rude. Autistics without a learning disability have a 9 times higher suicid rate than the rest of the population. So it's not all champagne and sunshine on that side of the spectrum. I don't think people are celebrating getting a diagnosis like they won a prize or like it's a badge of honour. I think they are happy for getting an explaination for their problems and a validation that they are not a failed or lazy person that could have done better if they only had tried a little bit harder.


Yes agree 100% , although don’t think it’s the newly diagnosed behind all the crazy stuff that gets pushed out there.

Personally I was the most “militant” in the months after diagnoses. Looking back overcompensation for low self esteem. As I became aware of and opposed to cancel culture/wokeness I came to realize that in some ways I was thinking the same way as those I was criticizing.

If not the newly diagnosed who is behind the crazy stuff?


From the looks of it various ND advocates making stuff up without being challenged on multiple slick websites, backed up by active twitter users with little else to do all day.

Some actively bully the mothers of autistic kids, many have other mental health problems and are probably motivated by some kind of unresolved anger directed at their own parents or the world.

But I don’t really blame all these autistic people, we are just victims reacting in our own way.

The worst are NT`s who think they can only be kind or polite by lying to autistic people, by going along with what many extremists say knowing full well its BS, which is a sadly NT thing anyway, which is funny in a way as its usually us who get criticised for being honest.

The worst NT`s are the ones who make money out of such things by writing books, or other saleable things, knowing full well what they write is BS.

Without naming a name the worst are actually paid by the tax payer to develop treatments to help autistic people but see a little retirement fund in a book or two, fat cat useless scientists could be a word.


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