Response to some concerns about neurodiversity paradigm

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Mona Pereth
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02 Sep 2019, 4:36 am

Here, in the parents forum:

carlos55 wrote:
I just feel neuro diversity goes a step too far in trying to block science research that has the potential to help people ( humaine medical research should never be blocked ).

It's more that we want the research priorities to be different from what they are now.

For example, as far as I am aware, no one in the autism research establishment is paying any attention at all to the educational methods recommended by Jason Wu (eikonabridge) here in the parents' forum here on WP.

What if his methods were to be studied and tested? How many nonverbal autistic children could be helped? How many autistic children are there out there who might have the potential to become geniuses if taught via Jason Wu's methods -- but who, without those methods, will never learn language of any kind and will be assumed to be intellectually disabled?

I suspect a vast, vast number.

Also, I've never heard of anyone making a systematic study of those autistic people who were thought to be severely disabled in early childhood, but who then grew up to become very "high-functioning." It would be highly desirable if someone could interview a large number of such people and their parents, to determine what their parents did right.

Instead, nearly all the research money seems to be going into:

1) "Early interventions" that focus on the child's social behavior and not on cognitive development.

2) Brain research with the eventual longterm aim of radically tinkering with kid's brains.

Hardly anyone, other than neurodiversity activists, thinks in terms of working with, rather than against, a child's autistic traits to develop the child's strengths.

To me that's an absolutely awful, tragic waste of human potential. Do you not agree?

carlos55 wrote:
Also there's the trap of "over abling" disabilities in the public perception regardless of the reality. Here in the UK thousands of disabled people on welfare have committed suicide after being poorly assessed fit to work then have had all their financial assistance taken away.

I see your point here. That's a real problem, alas, but it's based on a very obtuse misunderstanding.

A major point of disability rights advocacy is that many disabled people may potentially have great abilities, but can manifest those abilities only if they have the right accommodations and/or the right education/upbringing. The mere theoretical existence of a conceivable circumstance under which people with a given disability could potentially do productive work does not make all these people actually able to work unless there exist a sufficient number of workplaces with the right accommodations. What's needed is to make those accommodations more widespread, not to pull the rug out from under disabled people before that happens!

carlos55 wrote:
Its a double edged sword where the autistic community need to tread carefuly. Many in power and authority would like nothing beter than to be told they no longer have to keep to their moral / financial obligations....

That's a real problem, and we do need to be clear about what's needed.


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magz
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02 Sep 2019, 1:04 pm

Did neurodiversity activists really try to block any actual research?


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eikonabridge
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02 Sep 2019, 1:16 pm

Mona Pereth wrote:
For example, as far as I am aware, no one in the autism research establishment is paying any attention at all to the educational methods recommended by Jason Wu (eikonabridge) here in the parents' forum here on WP.

By the way, the name is Jason Lu, and Jason Wu. :D Of course no one pays attention to what I say. See, it took like 300 hundred years for the Catholic Church to apologize to Galileo. It's always hard to be at the forefront. Galileo was sent to Inquisition for saying the earth went around the sun (heliocentrism). It's matter of getting used to it. When your purpose is to do the right thing, it really doesn't matter whether people understand you today or not. The kind of thing I do transcend my living days.

Quote:
Also, I've never heard of anyone making a systematic study of those autistic people who were thought to be severely disabled in early childhood, but who then grew up to become very "high-functioning." It would be highly desirable if someone could interview a large number of such people and their parents, to determine what their parents did right.

Yep, that'll be nice. Here is one story that I know. His name is Erik Weber. You can google for "Erik Weber Autism" and find out about his story. His YouTube channel is here:
https://www.youtube.com/channel/UCuIUxrjK0JPvCyJyhWBwtYg/videos

Quote:
Instead, nearly all the research money seems to be going into:
1) "Early interventions" that focus on the child's social behavior and not on cognitive development.
2) Brain research with the eventual longterm aim of radically tinkering with kid's brains.

Yep, that bugs me, because people start by looking at autism as a defect. Worst of all, this neurotypical bias actually permeates into the autistic community, and most autistic people end up looking down on themselves.

People don't pause to ask: when did autism enter the human race? Could it be that it serves a purpose? Could it be that autism is part of normal?

People jump into therapies without answering those questions. That is so scary. Because, I have explained that autism entered human race about 10,000 years ago, with a purpose: to help with the survival of human clans, given that warfare become a factor in human evolution after the invention of bow and arrow. This type of conjectures can actually be tested, just like color blindness. See, color blind people can see through camouflages. Anthropologists went out and gathered data, and have found that survival hunter-gatherer societies have a much lower rate of color blindness. What does this mean? This means that the emergence of agriculture society is what has introduced color blindness, because (1) food storage, and (2) scarcity of land and water resources, prompted escalation in the magnitude and frequency of wars. Clans without color blind people (or autistic people), would lose wars and their genetic traits be eliminated. It's natural selection.

If we understand that autism is part of normal, then we would realize that what's not normal is public education. Public education has a history of less than 200 years. Probably less than 100 years in many parts of the world. See, governments think that it would be better for parents to work and pay tax, than spending time raising their children. The problem is, people then try to get smart and think about economy of scale in education. A teacher would take care of 20, 30, or more. So, they asked to teach all the children the same way. And that's where things turns awful for autistic children, because now they are considered "not normal" since they can't be taught the standard way.

So, a system that is totally abnormal (public education) is now trying to overturn a system that was totally normal (autistic children).

Quote:
A major point of disability rights advocacy is that many disabled people may potentially have great abilities, but can manifest those abilities only if they have the right accommodations and/or the right education/upbringing.

I mean, why do people even care about eye contact, verbal skills, making friends?! People totally forget about the story of Helen Keller. Deaf, mute, and blind. But she developed into a world renowned lady, didn't she?

Perhaps I don't have that bias because in the early days when I was working as a computer programmer, I participated in the Python programming group. That was around 1998 or so. One day, we found out that there were blind computer programmers participating in the discussion group. Yep, you can do computer programming even if you are blind. Even today, Google has several blind programmers.


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eikonabridge
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02 Sep 2019, 1:18 pm

The point is, people can acquire marketable skills and be developed, without any need to have eye contact, verbal skills, or having friends. They can become fully functional in our society, contribute with their work, and pay tax. So, why all this craze about turning our autistic children "normal"? Isn't the development of intellectual skills much more important? The funny part is, after autistic children are intellectually developed, most of them will actually develop eye contact, verbal skills and make friends along the way. Those skills come automatically, without parents/educators needing to worry about them, at all. Our society is completely upside down. We don't develop the brains of autistic children, and instead chase after all those meaningless goals (eye contact, verbal skills, making friends, tantrum management, sensory issues, etc. etc.) That's how we end up turning so many autistic children into low-functioning adults. We've got our priority backward. And the ultimate culprit is: public education, run by neurotypical people.


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02 Sep 2019, 1:44 pm

eikonabridge wrote:
The point is, people can acquire marketable skills and be developed, without any need to have eye contact, verbal skills, or having friends. They can become fully functional in our society, contribute with their work, and pay tax. So, why all this craze about turning our autistic children "normal"? Isn't the development of intellectual skills much more important? The funny part is, after autistic children are intellectually developed, most of them will actually develop eye contact, verbal skills and make friends along the way. Those skills come automatically, without parents/educators needing to worry about them, at all. Our society is completely upside down. We don't develop the brains of autistic children, and instead chase after all those meaningless goals (eye contact, verbal skills, making friends, tantrum management, sensory issues, etc. etc.) That's how we end up turning so many autistic children into low-functioning adults. We've got our priority backward. And the ultimate culprit is: public education, run by neurotypical people.


100%



carlos55
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02 Sep 2019, 2:18 pm

I stand by all past comments made

Quote:
Did neurodiversity activists really try to block any actual research?
Quote:


Its really turning into a perceived culture that many in the autistic community have lost control over. In many articles by aspies one can read in the press, on autism the same narrative persists, i.e “WE” “DON’T WANT AUTISM CURED”, which is easily perceived by NT`s as autism shouldn’t be treated or autistic people should be left alone, which easily turns into dumped.

This can be quickly seized upon by those in control turning into:-

Quote:
Its a double edged sword where the autistic community need to tread carefuly. Many in power and authority would like nothing beter than to be told they no longer have to keep to their moral / financial obligations.
Quote:



magz
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02 Sep 2019, 2:35 pm

If someone wants to misinterpret something, they will always be able to do it. It's not the neurodiversity issue. It's the same with e.g. feminism or being right- or left-wing. People not liking a given group for whatever reason will notoriously claim all the worst about them. People supporting them will see all the reasonable arguments their group provides.

It's a large-scale social phenomenon, we can't avoid it.


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eikonabridge
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02 Sep 2019, 2:40 pm

carlos55 wrote:
I stand by all past comments made

Hey, it's a competitive, dog-eat-dog world out there. You can stand by whatever comments you like. What matters is how well your children develop.

Can't wait for the day your children write comments on WrongPlanet, about you.


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carlos55
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02 Sep 2019, 3:01 pm

Quote:
Hey, it's a competitive, dog-eat-dog world out there. You can stand by whatever comments you like. What matters is how well your children develop.
Quote:


Im on the spectrum too, but who cares about that, im referring to the other 100 million.

Quote:
Could it be that autism is part of normal?[quote][quote]

What do you classify as normal? a non verbal man I know of who`s 22 with the intellect of a 2 year old, who self harms and will probably be dead at 36?

Why is it only one side of the spectrum gets the focus? in media, tv movies etc? This is what I mean its a narrative that the autism community has lost control of, that will simply be used against us eventually.



Mona Pereth
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02 Sep 2019, 3:27 pm

eikonabridge wrote:
By the way, the name is Jason Lu, and Jason Wu. :D

Very sorry I mis-typed your name!

eikonabridge wrote:
Of course no one pays attention to what I say. See, it took like 300 hundred years for the Catholic Church to apologize to Galileo. It's always hard to be at the forefront. Galileo was sent to Inquisition for saying the earth went around the sun (heliocentrism). It's matter of getting used to it. When your purpose is to do the right thing, it really doesn't matter whether people understand you today or not. The kind of thing I do transcend my living days.

It had better take a lot less than 300 years for your ideas to be taken seriously! Society changes a lot quicker these days.

eikonabridge wrote:
If we understand that autism is part of normal, then we would realize that what's not normal is public education. Public education has a history of less than 200 years. Probably less than 100 years in many parts of the world. See, governments think that it would be better for parents to work and pay tax, than spending time raising their children. The problem is, people then try to get smart and think about economy of scale in education. A teacher would take care of 20, 30, or more. So, they asked to teach all the children the same way. And that's where things turns awful for autistic children, because now they are considered "not normal" since they can't be taught the standard way.

Yep. That's probably the reason why "autism" (in a sense close to today's meaning) wasn't even noticed until the 1940's, a generation or two after public education became universal in Western countries -- and why the next big leap in "autism awareness" occurred in the 1980's and 1990's, soon after large numbers of married women had to enter the workforce in the late 1960's and 1970's, hence large numbers of children were now cared for in day care centers and preschools.

eikonabridge wrote:
So, a system that is totally abnormal (public education) is now trying to overturn a system that was totally normal (autistic children).

Public education is here to stay, because it does work well for most NT children, economies of scale and all. And most parents don't have the luxury of being able to stay home with their kids. So we need special education (including special ed preschool) to become radically better and more appropriate to the kids it serves than it is now.

To that end, we need a much bigger and better-organized autistic rights movement than now exists, and that can happen only if we first build a much bigger and better-organized autistic community than now exists.


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- Finally diagnosed with ASD in May 2019, after having suspected it for over ten years, and after having deeply explored the autism community for over one year while waiting for and obtaining diagnosis.
- In longterm relationship with boyfriend who was diagnosed with Asperger's Syndrome in 2001.
- Long history of participation in various oddball subcultures.
- My "Getting to know each other" thread: Hello from NYC.


Last edited by Mona Pereth on 02 Sep 2019, 6:15 pm, edited 1 time in total.

Mona Pereth
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02 Sep 2019, 3:35 pm

carlos55 wrote:
What do you classify as normal? a non verbal man I know of who`s 22 with the intellect of a 2 year old, who self harms and will probably be dead at 36?

The important questions are: why does this man apparently have the the intellect of a 2 year old, and why is he still nonverbal? As far as I can tell, today's autism research priorities don't even remotely consider exploring these vitally important questions at all, focusing instead on the defining traits of autism per se.

Jason Lu thinks he knows the answer to these questions: Because these kids weren't educated in the right way in early childhood. Jason Lu might be over-generalizing, but, in the event that he's right for even a significant fraction of "low-functioning" autistic kids, don't you think that would be an extremely important thing to know?

EDIT: Regarding some further concerns I have about the current direction of most autism research, see my posts here and here in the thread If a cure for ASD/Asperger's/autism was found?


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- In longterm relationship with boyfriend who was diagnosed with Asperger's Syndrome in 2001.
- Long history of participation in various oddball subcultures.
- My "Getting to know each other" thread: Hello from NYC.


magz
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03 Sep 2019, 1:15 am

carlos55 wrote:
What do you classify as normal? a non verbal man I know of who`s 22 with the intellect of a 2 year old, who self harms and will probably be dead at 36?
Apart from problems with assessing intellect of nonverbal autistics (thus, a relatively large number of "savants"), he likely has other conditions that are not treated because his autism and inability to communicate obscure them.
So, my neurodiverse opinion on the example you gave is: focus on establishing efficient communication, find out all the treatable conditions he has and treat them. I've known examples of people whose "autism got better" after treating completely unrelated chronic illnesses. My "autism gets worse" whenever I catch a flu. When you're in pain all the time, it's hard to function, but an autistic person often can't express they is in pain, often all they show is... more severe autism symptoms.

carlos55 wrote:
Why is it only one side of the spectrum gets the focus? in media, tv movies etc? This is what I mean its a narrative that the autism community has lost control of, that will simply be used against us eventually.
I think neurodiversity can be interpreted as part of disability rights movement. As I mentioned before, if someone wants to misinterpret you, they will, but there is a big leap between "disabled people deserve dignity and can be productive members of the society with right accommodations" and "disabled people are not really disabled".


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03 Sep 2019, 2:49 am

Finding the true intellectual ability of all children, be they ND or NT, is important . However sometimes/often an adult with the mind of a 2 year old is intellectually nothing more or less than that . I personally don't think there are masses of 'low functioning' NDs' who could be transformed into geniuses with the right help .


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Your neurodiverse (Aspie) score: 133 of 200
Your neurotypical (non-autistic) score: 47 of 200
You are very likely neurodiverse (Aspie)


magz
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03 Sep 2019, 5:11 am

firemonkey wrote:
Finding the true intellectual ability of all children, be they ND or NT, is important . However sometimes/often an adult with the mind of a 2 year old is intellectually nothing more or less than that . I personally don't think there are masses of 'low functioning' NDs' who could be transformed into geniuses with the right help .

I'm not talking about transforming people into geniuses. I'm talking about finding out and treating all the treatable co-ocurring conditions and providing accommodations to aquire as much independence as possible.
If someone turned out to be talented in something after breaking their functioning barriers, they wouldn't have been "turned into a genius", just given a chance to express what have been there all the time.


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03 Sep 2019, 5:31 am

magz wrote:
firemonkey wrote:
Finding the true intellectual ability of all children, be they ND or NT, is important . However sometimes/often an adult with the mind of a 2 year old is intellectually nothing more or less than that . I personally don't think there are masses of 'low functioning' NDs' who could be transformed into geniuses with the right help .

I'm not talking about transforming people into geniuses. I'm talking about finding out and treating all the treatable co-ocurring conditions and providing accommodations to aquire as much independence as possible.
If someone turned out to be talented in something after breaking their functioning barriers, they wouldn't have been "turned into a genius", just given a chance to express what have been there all the time.



The miscommunication is my fault. I should have ^^ to show I was referring to Mona's post . I don't disagree with what you are saying .


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Your neurodiverse (Aspie) score: 133 of 200
Your neurotypical (non-autistic) score: 47 of 200
You are very likely neurodiverse (Aspie)