Trump president win impact on healthcare and autism
08 Nov 2024, 7:12 pm
Watching Joe Rogan interview with calley and Casey means it’s obvious that Trump and RFK Jr could have a big impact on US healthcare especially how autism is perceived.
They are generally vaccine skeptics they all know and refer to each other.
Trump referred to the means, the means are connected to RFK Jr. RFK Jr is one of the big 3 in the administration. Trump, Musk , RFK Jr.
They all seem to be on a mission.
What we or anyone thinks about this and the science or conspiracy theory is irrelevant.
I’m referring to politics and policy here only.
They have the power we don’t.
Something big may occur as to what I’m not sure
https://m.youtube.com/watch?v=G0lTyhvOe ... xleQ%3D%3D
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"The reasonable man adapts himself to the world; the unreasonable one persists in trying to adapt the world to himself. Therefore all progress depends upon the unreasonable man."
- George Bernie Shaw
Last edited by Cornflake on 15 Nov 2024, 5:28 pm, edited 2 times in total.: Corrected the naming of RFK Jr (was JFK Jr)
ASPartOfMe
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08 Nov 2024, 8:14 pm
The belief that Autistic children are NT children who have been poisoned will drive policy. The “Autism Epidemic” will be declared a health emergency. This will allow the Food and Drug Administration to fast track treatments/cures. The FDA will be particularly keen to approve “cures” design to “recover” Autistic children.
It’s RFK Jr, not JFK Jr. President John Kennedy was Robert Kennedy’s Jr’s Uncle.
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Professionally Identified and joined WP August 26, 2013
DSM 5: Autism Spectrum Disorder, DSM IV: Aspergers Moderate Severity
“My autism is not a superpower. It also isn’t some kind of god-forsaken, endless fountain of suffering inflicted on my family. It’s just part of who I am as a person”. - Sara Luterman
MuddRM
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09 Nov 2024, 6:06 am
Halloween may have passed but old ghosts will likely be resurrected
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"The reasonable man adapts himself to the world; the unreasonable one persists in trying to adapt the world to himself. Therefore all progress depends upon the unreasonable man."
- George Bernie Shaw
10 Nov 2024, 12:45 pm
Honestly, probably nothing. The most likely outcome of all this nonsense is a drop in vaccination rates, and increase in infectious diseases spreading, and more parents allowing doctors to do things they shouldn't do because of the fearmongering.
If we really do care about the issues, and presumably anybody posting here does, the best course of action is to flood the airwaves with as much accurate science as possible. Trump doesn't have the sort of mandate to do things like this as people imagine he does and the next congressional elections are in 2 years with the primaries closer to a year and a half out. There are going to be committee hearings for the appointments and even without a majority of the seats, there's a lot that the Democrats could do about this, assuming they even care about this rather than see it as an opportunity to do nothing while raking in large amounts of campaign dollars.
You should do whatever you think is best, but at the end of the day, it's unlikely that being diagnosed as an adult is going to make much of a difference in either direction. I don't think that they'll be able to repeal the ACA without revealing to the voters just how good it was to have any sort of protection like that.
10 Nov 2024, 1:10 pm
https://hfsc.org/specialties/autism-center-at-hsc/
Autism Care
The Autism Center is a specialized interdisciplinary program for children and adolescents experiencing symptoms of Autism Spectrum Disorder (ASD). We work closely with your family to diagnose, assess and treat your child’s behavioral, medical and communication needs. As a family-based program, we help you understand and better fit into the world that your child is living in to create stronger bonds within your family.
This autism center is located in the center of Connecticut, midway between NYC and Boston.
This hospital also does sports medicine, where top athletes can get care outside the bright lights of those two big cities.
I'm sure this is where the wealthy send their kids for help.
If you can afford it, there are healthcare specialists that work on referrals and don't take insurance.
I doubt Trump's policies will have any effect on this segment of the Healthcare Market.
12 Nov 2024, 9:42 am
It will be a HUMONGOUS relief on the economic situations of American autistic people that have been exacerbated by the Biden-Harris Administration as well as their needed resources available to them, like health care. In Florida, where I live, thanks to DeSantis, the State was able to get a very accurate estimate of how much money it costs to care for illegal aliens in the state of Florida: $566 million dollars.
{URL redacted}
That's just illegal aliens to start. We are not counting those with TPS, which is legitimizing unfettered mass migration.
Imagine what the quality of life for people like us here in Florida would be like if just that sample of the iceberg state money was instead used to properly care for us, to give us proper accommodations, and more importantly for urgent medical care. So if you get bitten by a viper for example, you would have extremely long waits because some migrant took your spot and it's resources in the ER. Imagine what good will it do for a wound that requires immediate prompt attention.
Oh yeah, don't forget Trump's Right to Try program. The liability burdens in using new breakthrough medical treatment to treat stuff like cancer is very very useful to people like us as well.
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Last edited by Cornflake on 15 Nov 2024, 5:21 pm, edited 1 time in total.: Soliciting money, for any reason, is not permitted on WP
12 Nov 2024, 10:12 am
How does that add up with the states loss of income?
Undocumented Immigrants Pay $1.8 Billion in Florida Taxes a Year, National Study Finds
15 Nov 2024, 2:57 pm
Well its official RFK is now in charge of US healthcare, the dept with the largest budget apparently bigger that defence
I wasn't aware but he`s chairman of the biggest child anti vax org there is:
https://childrenshealthdefense.org/
This is significant to the autism world
_________________
"The reasonable man adapts himself to the world; the unreasonable one persists in trying to adapt the world to himself. Therefore all progress depends upon the unreasonable man."
- George Bernie Shaw
ASPartOfMe
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22 Nov 2024, 8:33 am
With RFK Jr.’s HHS nomination, autism advocates fear a return to ‘a dark age’
“It was like a knife to my soul,” said Giwa Onaiwu, a Black autistic writer and advocate in Houston.
While erasing the teen’s diagnosis isn’t possible and Giwa Onaiwu isn’t sure where their teenager soaked up this shame, they’re also not surprised at the question. They, like many autistic people, worry that the United States is primed to return to an era of autism misinformation with the potential ascension of Robert F. Kennedy Jr. into public office.
When Trump nominated the vaccine critic and former environmental lawyer to lead the Health and Human Services agency, his choice rippled through the autism community. He’s called autism an “epidemic.” Advocates and scientists are frightened at how mainstreaming these myths could alter how the country treats autism and funds research to inform our understanding of the condition.
“The belief that vaccines cause autism isn’t just factually wrong,” said Zoe Gross, Director of Advocacy at the Autistic Self Advocacy Network. “If you’re saying vaccines cause autism and therefore, people shouldn’t get vaccines, you are also saying it’s worse to be autistic than to die of measles. That’s not a belief that autistic people are happy with.”
And many people in the community feel strongly about the Kennedy nomination. Anger, dread, fear, resolve — the collective mood is grim.
“My primary concern is that he’s going to take autism information and support back to a dark age that we haven’t experienced yet. It’s gonna be worse than anything we’ve been through before,” said Shannon Des Roches Rosa, senior editor at Thinking Person’s Guide to Autism.
The community frets because it has a lot to lose. Activists have worked hard to destigmatize autism since an infamous 1999 study suggesting a link between the condition and vaccines.
Public policy and popular understanding of autistic people has dramatically shifted in recent years as more researchers investigate measures to improve a person’s quality of life, rather than simply autism’s origins. If Kennedy pivots the field back to vaccines, he’d be relitigating settled science, according to Zach Williams, a psychologist and neuroscience doctoral candidate at Vanderbilt University School of Medicine.
“Our gripe with vaccines ended 20 years ago, and we’re sick of it. We have no desire to continue that debate,” said Williams, an autism researcher himself. “The fact that people have resurfaced it with the covid vaccine made every single autistic person I know just groan again. It is the bogeyman of our community that people continue to be anti-vaccine.”
In the 2000s, the autism community was rife with misinformation and dangerous therapies, often sparked by Kennedy’s writing and speeches. The resulting stigma left its mark on autistic people’s mental health. Placing Kennedy and his anti-vaccination views into one of the county’s most powerful public health positions sends a clear message to autistic people about how the world feels about autism, said psychologist Monique Botha.
When the Durham University professor interviews autistic people, the legacy of the disproven link between vaccines and autism has been a recurring theme. One person told Botha, “People would rather their children have a potentially fatal disease than end up like me.”
Rosa knows firsthand how an uncertain information landscape can affect autism care. As the parent of an autistic adult, she fell for pseudoscience when she first started researching treatments that didn’t help her son. A similar ecosystem could develop if Kennedy were to lead HHS, which she called a “a nightmare scenario.”
“It’s an information clusterf**k, an information snafu, almost an autism information Squid Game. How do you find someone with the right information?” she said.
Finding the right information about autism means funding and disseminating research. But it would be relatively easy for Kennedy to curb such efforts. He has already vowed to fire 600 NIH employees on his first day in office, and he could also nix existing research, though that would take more time, said Dora Raymaker, co-director of the Portland State University Academic Autism Spectrum Partnership in Research and Education.
Raymaker is also a research associate professor, meaning they are dependent on federal funding to do their job. In 2019, a previously-funded research project into psychosis was ready to start, but Raymaker and other advocates blamed Elinore McCance-Katz, Trump’s appointee to Substance Abuse and Mental Health Services Administration for refusing to reup the project.
“The entire thing fell apart two weeks before it was supposed to start,” said Raymaker.
One of the main ways the federal government interfaces with autistic parents, children, and researchers is through the Interagency Autism Coordinating Committee. The committee helps the HHS Secretary define federal priorities on autism research, and if Congress passes the Autism CARES Act of 2024, the committee will have to sketch out a strategic plan for how to spend hundreds of millions of federal research dollars on autism.
In recent years, the committee’s composition has more accurately reflected the diversity of autistic experiences, including adults, women, people of color and people who are nonverbal or have intellectual disabilities. More focus has been placed on research that investigates an autistic person’s quality of life. If Kennedy is in charge of HHS, he could handpick a leader for the Office of National Autism Coordination, which directs the IACC. How that might impact the future of federally-funded autism research is anybody’s guess.
There’s many research priorities of the autistic community that are really underfunded and to tip the balance more towards causation would make that underfunding worse,” said Gross.
Still, Raymaker thinks Kennedy is starting out on “weak ground” and that there is a limit to the damage he could do to HHS research and programs into autism. “You can’t unspill the milk. You can’t suddenly make a connection between autism and vaccines that literally isn’t there,” they said. “The federal government has control over what it plans, what it will fund, but they don’t have any control over what you find.”
Botha disagrees, and points to the the past as proof.
After The Lancet published the infamous 1999 paper, the autism research field had to reckon with the flawed science. Stronger, more inclusive science emerged from its ashes, said Botha. There’s no silver lining about returning to that era, because disinformation has replaced misinformation that could easily go global.
The global implications of this misinformation are always top of mind for Giwa Onaiwu, a first-generation immigrant whose family hails from West Africa, from Nigeria and Cabo Verde. They’re trying to chart the best future for their son. A place where he doesn’t have to spend his teenage years worrying how an autism diagnosis could haunt his future.
“Do we need to send you to some cousins in Western Europe? Do we need to send you to the great auntie you’ve never met in Canada? Do we need to try to send you to Cabo Verde or Nigeria?” said Giwa Onaiwu. “I’m trying to think about what their adulthood will look like, because I can’t, I don’t know what the future will hold.”
Reasons why this is not as bad as it sounds
While his hardcore MAGA base is into being anti-vax the swing voters, the Trump is the lesser evil voters know or have autistic family members. At lot of these parents do believe in ND movement ideas. Trump is selfish. As soon as he figures out that the anti-vax stance is hurting his image he will drop Kennedy like he did with Gaetz.
Progress is inevitable. So are setbacks along the way but they are always overcome leaving those still opposing the inevitable as mocked relics.
Reasons why this is as bad as it sounds
Nothing is inevitable including progress.
Even if progress is inevitable the casualties during setbacks can be devastating.
Some History:
When I first got here in 2013 a lot of the after effects of the dark ages were still going strong. Autism Speaks was founded by NBC President Bob Wright and his wife Suzanne Wright. Because Bob Wright was well liked and one their own Autism Speaks was the go to organization for the mainstream media to find information about autism. They ran two ads one showed a mother thinking about driving off a bridge because her autistic son was such a burden, in the other Autism was portrayed as devil like taking over their normal kids. The ad ended on a somewhat “hopeful” note of parents uniting to fight the “demon” Autism. Suzanne Wright conflated us with lepers in front of the Pope no less.
While your average parent of an autistic child probably did not know who the Wright’s were they most likely knew who big time celebrity and fellow “warrior mom” Jenny McCarthy was. She founded ‘Generation Rescue’ which was what it sounded like.
Opinion=mine:
This article mentioned the dark ages as something they thought has passed after 2010. Many articles and opinion pieces I read in the late 2010’s prior to COVID echoed this theme describing the anti vax movement as something that had been thoroughly debunked, a relic of the past. This complacency made me want to puke. True the anti-vaxx and ensuing “worrier mom” mentality was fading but it was far from fringe.
Personal Note:
I find having to redo something I mistakenly thought I had finished harder mentally than doing the task the first time around.
_________________
Professionally Identified and joined WP August 26, 2013
DSM 5: Autism Spectrum Disorder, DSM IV: Aspergers Moderate Severity
“My autism is not a superpower. It also isn’t some kind of god-forsaken, endless fountain of suffering inflicted on my family. It’s just part of who I am as a person”. - Sara Luterman
Last edited by ASPartOfMe on 22 Nov 2024, 10:44 am, edited 5 times in total.
22 Nov 2024, 9:22 am
I don't care much for vaccines since i was born long before the MMR was ever issued.
However RFK is right to look at damaging chemicals in our food, water , environment and question big pharma.
Its a fact that the US is fatter & sicker than ever and those that make us sick are making big profits from that.
Unfortunately the autism community is infected with identity politics which poisons any debate on what is in effect a net negative for those with even the mildest traits.
People misrepresent any attempt at cure and prevention as a personal attack against them rather than just referring to a separate medical condition, its not enough to be autistic they literally want to be autism.
The bottom line with autism from a national perspective, if an adult human cannot look after themselves a family member or a paid carer has to step in to provide that. That obviously costs money and human resources, resources that would have gone elsewhere like caring for the elderly for example, so in effect makes autism a burden regardless of vague sweet euphemisms of "difference" & "strengths & weaknesses".
Which is why it cannot be ignored
_________________
"The reasonable man adapts himself to the world; the unreasonable one persists in trying to adapt the world to himself. Therefore all progress depends upon the unreasonable man."
- George Bernie Shaw
22 Nov 2024, 10:30 am
However RFK is right to look at damaging chemicals in our food, water , environment and question big pharma.
Its a fact that the US is fatter & sicker than ever and those that make us sick are making big profits from that.
Unfortunately the autism community is infected with identity politics which poisons any debate on what is in effect a net negative for those with even the mildest traits.
I don't entirely agree here, like all other communities, getting any of the illnesses for which MMR is intended to prevent is a massive issue. And, unlike some commuities, if we do contract it, there can be a lot more issues that arise in terms of many of us having comorbidities and the fact that many of us struggle to have jobs which provide health care. And even just getting a health care provider if we do have insurance can be an issue, not to mention that we're less likely to have a cushion if we're out of work for a period due to illness.
That being said, we definitely are infected with identity politics as a community, which definitely does make this an issue regardless of where we are in terms of traits and severity.
It's really not misrepresentation when nobody knows where the precise line is between autism and other comorbidities. They can't even decide where the line is between autism and not autism. Given the long term tendency of things like this to slide around and the relative difficulty of rolling things back if there are unintended consequences, skepticism is definitely appropriately. Just look at the issues that the deaf/hearing impaired community has had in recent decades with some forms of hearing impairment now being curable and assistive technologies being developed that allow for people to communicate without knowing how to sign. There have been a lot of improvements as a result, but it's also on the verge of absolutely destroying the community aspect as well. I'm not in that group, so it's really not my place to say what the right thing to do there is, but it's rather dishonest to suggest that there aren't alternatives to cures for autism writ large when more targeted cures are both less likely to lead to unintended consequences and more likely to actually happen. Not to mention that historically, people with less overt traits got completely screwed over in terms of getting any assistance because there were more impacted people in existence, even though we might have been able to support ourselves with relatively little help.
Which is why it cannot be ignored
Most likely, we'd be repurposing things that are needed to deal with adults with dementia. Sure, there are differences, but a good chunk of the things that would be helpful for autistic adults already have to be developed for the elderly anyways. Plus, if the population really does start to drop in the next 50 years, there's going to be no getting around having robots and computer assistance to do that stuff anyways.
23 Nov 2024, 5:33 am
Some big differences someone with advanced dementia usually may have a lifespan of a couple of years and is usually paid via the persons estate before or after death, with autism lifespan maybe decades with nothing to pay for the care
Realistically there's probably only a small % of autistic people able to hold down a full time competitive job, when you take away ID, spikey functioning and other mental health problems that cripple functioning preventing employment.
Its in other areas too that autism is having an economic impact including education.
From a purely economic standpoint you can see why any government would be wanting to prevent / cure autism
https://www.theguardian.com/education/a ... h-councils
_________________
"The reasonable man adapts himself to the world; the unreasonable one persists in trying to adapt the world to himself. Therefore all progress depends upon the unreasonable man."
- George Bernie Shaw
ASPartOfMe
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23 Nov 2024, 7:19 am
Vaccines like everything else in American politics is caught up in our zero sum game way of thinking. Either vaccines are poison that is being administered to Americans due to a government-big pharma conspiracy or a miracle that can’t be questioned.
The truth as always is somewhere in between and IMHO much closer to the miracle narrative.
As far as vaccines causing Autism no reputable studies have proven it. Anti vaxxars will say it has been proven reputably but has been covered up, the truth tellers pushed aside, branded as quacks. The reason I find that narrative problematic is that fame and fortune await any people or organization that finds the cause of Autism if such a thing can be found. Same for any media that could prove a coverup of the deliberate poisoning of America. That is why if you read my posts in the research and studies thread nearly all the researchers end up saying a version of “we found a key to autism that nobody else has”.
For arguments sake I will assume that autism is purely a disease, a horrific burden on all afflicted and their families. Most often victims of horrific diseases are treated with compassion a human who had a terrible thing happen to them. This is less so with mental illnesses. This is especially true with people thought to be robots in human bodies. If poisoning is causing a horrific disease that is an epidemic whose prevalence is rising so fast that if it is not stopped everybody will be autistic, it demands that all caution be thrown to the wind, horrific consequences of bad attempts to find a cure become acceptable casualties.
The valid arguments against that happening is that this is not 10 years ago. Not only do a lot of parents have ND ideas they think Autism is giving their kids superpowers. They just will refuse to let anything like the above happen. I wonder how much of this is that these parents are truly ND or how much is them making the best of a bad situation? Right now they are working under the assumption that Autism won’t be cured for a long time or can never be cured. If an apparent cure is at hand I can envision a lot of these ND parents changing their tune.
While correlation does not imply causation it can sure seems like it does. It has been known since Kanner’s time that autistic traits come to the fore at around the age vaccines are first administered. All the expert and mainstream media debunking has run up against people communicating to each other that my kiddo regressed terribly shortly after getting vaccinated. At this point the all of the attempts to squelch the anti vax movement have failed, the movement has a place in the highest levels of the American government.
Conclusion:
None of us really knows what the future holds but as far as I am concerned this is worst development for autistic people since I joined this site in 2013.
_________________
Professionally Identified and joined WP August 26, 2013
DSM 5: Autism Spectrum Disorder, DSM IV: Aspergers Moderate Severity
“My autism is not a superpower. It also isn’t some kind of god-forsaken, endless fountain of suffering inflicted on my family. It’s just part of who I am as a person”. - Sara Luterman
23 Nov 2024, 1:14 pm
Maybe he`ll look at his friend Elon and realise the absurdity of the DSMV and order change?
Then again given the events in Ukraine recently, we may find ourselves wandering through a post apocalyptic nuclear wasteland hunting rats for survival in the next few weeks, in which case it all becomes completely irrelevant and flashback to these WP discussions as memories of a once comfortable long lost world.
_________________
"The reasonable man adapts himself to the world; the unreasonable one persists in trying to adapt the world to himself. Therefore all progress depends upon the unreasonable man."
- George Bernie Shaw
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