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RFK Jr.'s autism study to amass medical records of many Americans (1 Viewer)

Its worse because Kennedy is part of a long line of people that just dont want us to have a legitimate voice. Autism speaks demonized us in a very similar way. Autistic people are often denied a voice even in organizations that purport to speak for us.
My knowledge of autism is limited to what I've read about Temple Grandin. Amazing woman.

FWIU, our knowledge of autism has increased exponentially over the last 10 years. Our studies on Theory of Mind* have also accelerated due in part to autism discoveries. All this good work is in danger of being lost.

* the human ability to see intentionality, to know what others are thinking and how they'll react

Ironically, Musk's behavior exhibits a serious deficiency in Theory of Mind. We can view him as arrogant and careless, but someone who doesn't communicate in a manner cognizant of its consequences can simply be lacking in this human ability.
 
My knowledge of autism is limited to what I've read about Temple Grandin. Amazing woman.

FWIU, our knowledge of autism has increased exponentially over the last 10 years. Our studies on Theory of Mind* have also accelerated due in part to autism discoveries. All this good work is in danger of being lost.

* the human ability to see intentionality, to know what others are thinking and how they'll react

Ironically, Musk's behavior exhibits a serious deficiency in Theory of Mind. We can view him as arrogant and careless, but someone who doesn't communicate in a manner cognizant of its consequences can simply be lacking in this human ability.
Sometimes i can see it in Musk but other times im like nah mah dude thats 100% your own doing. I mean we have come a long way from Hans Asperger’s “autistic sociopaths” diagnosis but a lot of times the organizations that say they are there to help just end up hurting us. I dont know if anyone else experiences that kind of thing. Ill look up Temple Grandin and possibly do a video review thanks.
 
You seem intent to bring a choice about being vaccinated into a conversation about things people do NOT have a choice about.

Why?

Do you think people choose to have autism?
Next people will be supporting keeping records of people who choose certain forms of birth control.

As if being unable to have certain medical procedures due to biological factors was a choice...

Do you really only support medical privacy for some small group of people, and not others?
 
For many students, like the level 3 autism kids I've described in this thread, the special education classroom for all of their academics is the absolute best place for them while they're in the school. Eventually, many of those students are transferred to other facilities because their disabilities are so profound. General education teachers aren't and don't need to be trained to teach children with severe disabilities. Those students need specialized teachers who have been trained to help them.

And, no, when I say "severe disabilities" I don't mean anyone with special needs. I mean anyone with severe disabilities.
Your opinion does not align with the law.

The LAW states least restrictive environment.

And “general education teachers don’t know better” isn’t an excuse.

Do better. Become more informed.

Ignorance isn’t an affirmative defense.
 
My knowledge of autism is limited to what I've read about Temple Grandin. Amazing woman.

FWIU, our knowledge of autism has increased exponentially over the last 10 years. Our studies on Theory of Mind* have also accelerated due in part to autism discoveries. All this good work is in danger of being lost.

* the human ability to see intentionality, to know what others are thinking and how they'll react

Ironically, Musk's behavior exhibits a serious deficiency in Theory of Mind. We can view him as arrogant and careless, but someone who doesn't communicate in a manner cognizant of its consequences can simply be lacking in this human ability.
Did you first come across Temple Grandin in Oliver Sacks' book, An Anthropologist on Mars: Seven Paradoxical Tales?
 
Sometimes i can see it in Musk but other times im like nah mah dude thats 100% your own doing. I mean we have come a long way from Hans Asperger’s “autistic sociopaths” diagnosis but a lot of times the organizations that say they are there to help just end up hurting us. I dont know if anyone else experiences that kind of thing. Ill look up Temple Grandin and possibly do a video review thanks.
Temple Grandin is profiled in Oliver Sacks' book, An Anthropologist on Mars: Seven Paradoxical Tales.

I cannot recommend his books highly enough.
 
Your opinion does not align with the law.

The LAW states least restrictive environment.

And “general education teachers don’t know better” isn’t an excuse.

Do better. Become more informed.

Ignorance isn’t an affirmative defense.

"Least restrictive environment" =/= "all students with special needs should be in general education all day. It means they are to be with their general education peers sometimes during the school day. The amount of that time is determined by the team during the IEP meeting. They have the right to have the most qualified teacher and best education the school can provide. Students with severe disabilities need to be with teachers who are trained to help them. Putting them with teachers who aren't trained is doing them a disservice.

A student who screams at the top of his lungs, tries to run out of the school daily, bites, kicks, throws things, cannot handle excessive noise, needs constant care should not be in a general education classroom. He needs a teacher who knows how to teach him in a quiet classroom with very few kids.
 
Next people will be supporting keeping records of people who choose certain forms of birth control.

As if being unable to have certain medical procedures due to biological factors was a choice...

Do you really only support medical privacy for some small group of people, and not others?
Your don’t seem to have a firm grasp on HIPPA laws.

Medical disclosure of private information can be compelled and/or broken when it has to do with public health and/or when a person’s medical condition can harm another individual.

Contact tracing, etc is an example of this.

Individuals with an STD, for example, can have their medical history disclosed to protect another person from exposure or to make sure that another person becomes informed of exposure so that they can get tested and treated.

But considering autism isn’t a contagious disease, the same standard cannot be applied.

🤷‍♀️
 
"Least restrictive environment" =/= "all students with special needs should be in general education all day. It means they are to be with their general education peers sometimes during the school day. The amount of that time is determined by the team during the IEP meeting. They have the right to have the most qualified teacher and best education the school can provide. Students with severe disabilities need to be with teachers who are trained to help them. Putting them with teachers who aren't trained is doing them a disservice.
You don’t get to say what the “least restrictive environment” is. You haven’t demonstrated any grasp of the subject at all.
A student who screams at the top of his lungs, tries to run out of the school daily, bites, kicks, throws things, cannot handle excessive noise, needs constant care should not be in a general education classroom. He needs a teacher who knows how to teach him in a quiet classroom with very few kids.
No, that’s your opinion as to what that student needs.

Not an actually informed determination of what that student needs that’s supported by testing, documentation, evaluations, etc.

The two are not the same.
 
Whoa!



I do think some teachers are too quick to suggest medication -- sometimes even as young as first grade. I do admit that my super hyper kiddos try me sometimes, but I love 'em. I was the complete opposite when I was young so it's harder for me to relate to their personality. But they are almost always the ones who get my jokes or sarcasm so we have a giggle together. I usually ask them to go on adventures (taking a note to another classroom or the office) because I know they need to get their wiggles out. And I loathe when other teachers take recess away from kids. They need to run around. Why would you take that away from them?

Honestly, for the vast majority in the spectrum, it comes down to understanding and tools and a willingness to coexist without needing conformity.

My list is as follows:

ADHD
Depression
Anxiety
CPTSD
Awaiting diagnosis for autism.

What a ****ing mess, right?

From out of a complete, house bound burn out, at the age of 45, I went back to school, graduated valedictorian with a 96.4% overall average, started my own business, and I'm doing pretty well overall. Always work to do, but not too shabby.

And I got here simply by accepting the reality of how my brain works, and going with it.

My home is my office, so if I want to start my work day at 8 at night, that's when I start. I can get tons done when I'm in the mood, so I do, because I know there's going to be days that I just want to play video games or share my dubious wisdom here... hehe I make my deadlines, I love my work, I have great interactions with my clients, all because I gave up trying to be "normal".

If you work with who we are, rather than what you think we should be, the results will surprise you.

As grateful and proud of my accomplishments as I am, it took a lot of work, and a few decades, to get "started" in this better, more authentic life. You have so much power as an educator. I can only imagine where I'd be now if someone would have told me as a kid that it was OK to be me.

Out of my "list" the anxiety and depression and CPTSD have been primarily attributed to the lack of understanding by others of my neurodivergence. Kinda ****ed, huh?
 
Did you first come across Temple Grandin in Oliver Sacks' book, An Anthropologist on Mars: Seven Paradoxical Tales?
No, I saw the TV movie, which was very well done, then I just scoured the internet. She's 10 years older than me. She was beginning to change the cattle industry before I got out of grade school. That was a long time ago. Why have I (and seemingly most people) not heard of her until recently?
 
You don’t get to say what the “least restrictive environment” is. You haven’t demonstrated any grasp of the subject at all.

I do. I have sat in on many meetings where my input was needed to determine the least restrictive environment.

No, that’s your opinion as to what that student needs.

Not an actually informed determination of what that student needs that’s supported by testing, documentation, evaluations, etc.

The two are not the same.

I'm sorry --- you think I think I can just make this decision by myself without an IEP team? C'mon, Bird. That's absurd and a conclusion that makes no sense with everything I've said. But, again, you have incorrect preconceived notions about me that cloud your judgement. 🤷
 
do. I have sat in on many meetings where my input was needed to determine the least restrictive environment
After you just got done telling us how you don’t understand special educational needs, have no training on it, etc?

No - you sat in meetings where you were used as the “general education” teacher in attendance to check a box.

Lots of schools do that.

Some get sued for it or brought up on due process charges or state and federal complaints.

🤷‍♀️
 
After you just got done telling us how you don’t understand special educational needs, have no training on it, etc?

That isn't what I said.

No - you sat in meetings where you were used as the “general education” teacher in attendance to check a box.

Wow. You think the general education teacher is just there for a signature? Ooooookay.

I guess I wasted a lot of time talking, answering questions, documenting, etc. if all I needed to do was check a box for attendance. I'd better let our psychologist and sped coordinate know that I don't need to speak at all at the next IEP meeting.

Lots of schools do that.

Some get sued for it or brought up on due process charges or state and federal complaints.

🤷‍♀️
 
That isn't what I said.



Wow. You think the general education teacher is just there for a signature? Ooooookay.

I guess I wasted a lot of time talking, answering questions, documenting, etc. if all I needed to do was check a box for attendance. I'd better let our psychologist and sped coordinate know that I don't need to speak at all at the next IEP meeting.
Good idea.
 
No, I saw the TV movie, which was very well done, then I just scoured the internet. She's 10 years older than me. She was beginning to change the cattle industry before I got out of grade school. That was a long time ago. Why have I (and seemingly most people) not heard of her until recently?
I started reading Oliver Sacks' books 30 or so years ago, when they first came out, so I learned about her earlier than some. She's been an inspiration to many. As I recall - and I could be wrong - she was raised by her mother and her aunt, who helped her accept herself and also helped her figure out how to cope with being neurodivergent (although that term wasn't used).
 
I started reading Oliver Sacks' books 30 or so years ago, when they first came out, so I learned about her earlier than some. She's been an inspiration to many. As I recall - and I could be wrong - she was raised by her mother and her aunt, who helped her accept herself and also helped her figure out how to cope with being neurodivergent (although that term wasn't used).
Yes, her mother refused to institutionalize her and sent her to the aunt's farm. Like I said, I know nothing much about autism, but I would have thought stories like Temple's would have removed the stigma long ago.
 
Your don’t seem to have a firm grasp on HIPPA laws.

Medical disclosure of private information can be compelled and/or broken when it has to do with public health and/or when a person’s medical condition can harm another individual.

Contact tracing, etc is an example of this.

Individuals with an STD, for example, can have their medical history disclosed to protect another person from exposure or to make sure that another person becomes informed of exposure so that they can get tested and treated.

But considering autism isn’t a contagious disease, the same standard cannot be applied.

🤷‍♀️
So you support the government tracking certain people through medical history? Even if they didn't choose the diagnosis they have?

That's all I was pointing out. Your regressive, authoritarian stance on letting government track people through medical records only applies to certain people you want to protect.

I disagree with your stance. I think most people should be protected from such abuse. That was my point. You disagree, and have provided multiple scenarios to back up your point. Thanks for the discussion.
 
He'd better keep his heroin-addled eyes off of MY son's records.

Although if he does get a hold of them, he will discover that J never "regressed," was incapable of watching a person's face and listening to sound at the same time already at four weeks of age (would drop limp, I thought he was having seizures), tested negative for mercury several times, and that the batch number of his MMR was one which used no Thimerosal in its processing.

So on the upside, he'll probably burn my kid's records right out of the internet. Silver lining, and all that.
 
I'm fascinated by it too. We've seen a LARGE uptick in autistic children - from level 1 to 3 - since I started teaching. I want to know what causes it, how to improve my skills in teaching children who do not communicate like other children and if there are any kind of remedies that might alleviate any symptoms. It is heartbreaking to see the kids who scream almost all day, cannot have typical relationships with their peers, cannot eat on their own, take care of themselves. And then more in the middle of the spectrum, I want to know what's going on in the brains of those kids who do not speak at all, but can spell words well beyond their age level, can match countries with their flags, can write in other languages. I find all of it incredibly fascinating.

What if what "causes it" is evolution?

A modern infant would have been seen by any preceding or contemporary Homo species as mentally and physically deficient for years of its life. Homo Sapiens sapiens infants are helpless at birth to defend themselves, can't hold their heads up, take months if not years longer to walk well and communicate, can't crawl or creep at birth, have an instinct but no ability to cling and be able to hold onto a moving mother, develop quite tiny and comparatively weak teeth, and likely would have been seen as hopelessly disabled. It's theorized that many infants born in such an utterly helpless, indeed basically fetal condition were exposed to the elements or directly euthanized, potentially holding up reproduction via and population of H. sS as a "new" species thousands of years longer than it could have taken otherwise.

In reality, we simply have a far longer infant and toddler stage, which has ended up being a benefit, not a "disorder." Infants born helpless must be attended to constantly by the mother. Some researchers colloquially call our first three months "the fourth trimester." (Notably, that wouldn't be a trimester at all, for obvious reasons.) And for years after that, we must continuously have adults around us. This has meant constant interaction with adults (stimulation by minds more developed than ours simply by virtue of maturity), causing us to reach to understand. And because childhood lasts such a long time, we have years to mentally develop because we don't have to start surviving on our own at 4 or 5 years of age.

Autism is seen as "a deficit," and not "being able to" fit in with the rest of society. But society is for the large part at an emotional and yes, mental evolutionary standstill. We have more tech at our fingertips, and education at our disposal, but we are not necessarily "smarter."Just as some mothers must have kept and raised their little ones in borderline pre-H. Ss species, we today have supports for autistic people and no longer hide them away in some upstairs room. So.autism is no longer selected against naturally, as autistic people are cared for and urged to be in society even if they seem "different."

On the one hand natural selection is supposed to take a very, very long time, not mere centuries. On the other hand, we have evidence of evolutionary "leaps" (in various ways).

Who's to say there's something deficient about autistic people, outside of society's lack of acceptance of it and rush to "fix" if?

What if we're torturing our kids with overstimulation, tests and studies, constantly playing around with their diets because that might be "the problem," "detoxing" them with the latest weird fad, and not vaccinating them and allowing them to get pretty darned sick (or die) for no reason at all?
 
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The trump administration's action isn't limited to "level 3" autistic Americans.


The National Institutes of Health is amassing private medical records from a number of federal and commercial databases to give to Health and Human Services Secretary Robert F. Kennedy Jr.'s new effort to study autism, the NIH's top official said Monday.

The new data will allow external researchers picked for Kennedy's autism studies to study "comprehensive" patient data with "broad coverage" of the U.S. population for the first time, NIH Director Dr. Jay Bhattacharya said....

Medication records from pharmacy chains, lab testing and genomics data from patients treated by the Department of Veterans Affairs and Indian Health Service, claims from private insurers and data from smartwatches and fitness trackers will all be linked together, he said.

By bringing the data into one place, he said it could give health agencies a window into "real-time health monitoring" on Americans for studying other health problems too.

"What we're proposing is a transformative real-world data initiative, which aims to provide a robust and secure computational data platform for chronic disease and autism research," he said.

They are planning a "rapid timeline" to launch the autism research using this data, he said, but did not give specifics on when it would start or how long the studies would take. Kennedy last week appeared to walk back his earlier prediction that they would have all the answers to autism's causes by September.

Speaking with reporters on Tuesday, Bhattacharya pushed back the timeline, saying that they now hope to have grants going out the door by September for the research.

"It's hard to guarantee when science will make an advance. It depends on, you know, nature has its say," Bhattacharya said.
If they just wanted to do research, they could have used a tool that already exists like Epic Cosmos.

There is no need to amass such data.
 
I know vaccines do not cause autism.

I know cold, rejecting mothers do not cause autism (the early "explanation").

I know that trump's and MAGA's attacks on the DOE will likely damage schoolchildren on the spectrum.
I gave you a straight answer to your straight question. You did not reciprocate. Good day.
 
You cant prevent autism short of some super CRISPR technology. It’s developmental and genetic.
Closing off avenues of research that you have decided won’t work doesn’t sound like sound science to me. Until the genetic and developmental causes are identified, perhaps there are ways to mitigate either the occurrence or severity of autism in the meantime.
 

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