> "The U.S. Food and Drug Administration today initiated the approval of leucovorin calcium tablets for patients with cerebral folate deficiency (CFD) ... Individuals with cerebral folate deficiency have been observed to have developmental delays with autistic features (e.g., challenges with social communication, sensory processing, and repetitive behaviors), seizures, and problems with movement and coordination."
The wording, my emphasis added, certainly suggests this is a new med for CFD even though the title mentions Autism symptoms, not CFD
Search for the word autism in the release and tell me if you think this treats what they suggest in the title. It would be every other word if they believed it.
Seems like it works only for a very specific type of childhood autism, but if my child had this I would be kicking down doors to get it. The article has some good insight into how honest researchers feel about their work being trumpeted by the scientifically illiterate carnival barkers in charge of things.
It's worth noting that, in the absence of pre-registration, one should should assume that the body of literature (and any systematic review or meta-analysis that relies on it) could be significantly influenced by the file drawer effect.
Anyway, I looked at a recent systematic review from those search results (https://pmc.ncbi.nlm.nih.gov/articles/PMC8622150/), and it found exactly one double-blind RCT (https://pmc.ncbi.nlm.nih.gov/articles/PMC5794882/) that seemed to support what the FDA is saying here. It had a fairly short duration (12 weeks) and a small cohort (48). I'm not medical expert but I do read medical literature as an amateur, and I'm pretty sure this is nowhere close to the standard of evidence for establishing safety and efficacy that the FDA used to demand. It feels like we may be reverting all the way back to the evidentiary standards that allowed crap like thalidomide onto the market.
Sample size doesn't tell you everything about a study. You don't need to throw 40,000 people out of an airplane to determine it's safer with a parachute.
It does tell you something. But that kind of sample size is arguably underpowered for anything but a preliminary study. It's the statistical equivalent of Hubble before it had its corrective optics installed: still fine for seeing big unsubtle things like whether parachutes are warranted when jumping from airplanes, but unable to resolve all the details you want to know before concluding that a medication is safe and effective.
Participants 92 aircraft passengers aged 18 and over were screened for participation. 23 agreed to be enrolled and were randomized.
Intervention Jumping from an aircraft (airplane or helicopter) with a parachute versus an empty backpack (unblinded).
Main outcome measures Composite of death or major traumatic injury (defined by an Injury Severity Score over 15) upon impact with the ground measured immediately after landing.
Another favorite of mine along these lines is "Cigarette smoking: an underused tool in high-performance endurance training". (https://pmc.ncbi.nlm.nih.gov/articles/PMC3001541/) This one might actually be quite pertinent in this case, because the FDA's decision appears to rely heavily on exactly the kind of reasoning that this article satirizes.
There's an old joke about the lack of randomized controlled trials for parachutes. The joke is deployed when people complain about the lack of formal studies for things whose benefit is obvious.
Then somebody went ahead and did it, just to be funny. But you can't actually do a randomized controlled trial on parachutes, so you get a third layer of joke, about studies that don't actually prove anything.
I reviewed the linked studies of folinic acid treatment in ASD, and they uniformly say that larger studies are needed before considering this as a widely available treatment. The main issues that need to be worked out are:
* who this applies to (some studies suggest genotype and autism subtype matter for getting positive outcomes)
* what the side effects are (12 week studies of <100 people are not enough to safely deploy this as a long-term treatment at scale)
* how this compares to behavioral treatment (ABA and sensory interventions have reliable positive outcomes as well)
I think there's a useful signal there, but we need to be cautious rolling things out at a national scale without bigger studies.
This gets brought up often and while true isn't very useful. We know jumping out of plane is dangerous because we have a good understanding of the physics and we have many many comparable examples (jumping out of buildings etc). We understand the mechanism of action of parachutes, so we also know for example a tiny little parachute made of paper towel won't work, and we don't need to test it to know that.
Do we understand the cause of autism or how this supposed cure works?
The key is effect size. We didn't know the exact method of action when we started injecting comatose diabetic children with insulin, but when the coma patient sits up and starts chatting with you, you can establish that a drug is effective with very small sample sizes.
Sure, but even there you need some reasonable sample size. i.e. a sample of 1 won't be sufficient and more importantly it needs to be reproducible. Inject 1 patient and they wake up, but if you inject 10 others and nothing happens and it may not be effective (not that it's definitely not effective). This would require a then a larger sample size.
Autism isn't as cut and dry as this. Falling out of planes and diabetic comas are truly black-and-white outcomes, but ASD assessment involves behavioral testing of social and verbal ability, which has high variability between and within individuals. The linked studies about folinic acid are not finding a binary conversion of of ASD kids from non-verbal to verbal, rather they are detecting X% increase in Y behavioral test, which is subtle and something that is found with behavioral treatment. I would love to live in a world where we discover a treatment for ASD that is as clearly successful as insulin for diabetes, but we're not there yet.
I'm surprised they didn't just "partner" with General Mills or some such to turn this into an advertisement for folate fortification in sugary breakfast cereals.
For those replying: I did not mean this would seriously work, but that it would be par for this administration to basically bring cereal ads from Saturday morning cartoons into the CDC.
Leucovorin works (at least for some cases of CFD) because it bypasses a folate transport protein that can be nonfunctional and fail to transport ordinary folic acid into the brain. I guess that doesn't necessarily mean they couldn't do what you're suggesting though.
The typical folate in food or even the pregnant women folic acid supplement is good at preventing these birth defects; but for someone with NDD it would actually not help and depending on dose block up the pathways for it to heal.
Looking for The Cause of autism and The Cure for autism is exactly as absurd as looking for The Cause of cancer and The Cure for cancer. I think most people understand that there are many causes of cancer and many treatments that cover a range of different use cases.
The whole concept of a cause and cure is really damaging to the autistic community and just flying in the face of any sort of intelligent diagnosis and treatment.
> The FDA has conducted a systematic analysis of literature published between 2009-2024, including published case reports with patient-level information, as well as mechanistic data, and has determined that the information supports a finding that leucovorin calcium can help individuals suffering from CFD.
I would have liked to see some citations. I’m mostly curious about the sample sizes
I wonder about the following: Leucovorin is most often given in the form of Leucovorin calcium. That is interesting, because calcium is needed to regulate the release of dopamine in the brain. And this might also help with autism:
Are there any studies that compare Leucovorin calcium vs. Leucovorin sodium in autism? Maybe it is in fact the calcium that helps with autism and not the Leucovorin part?
Wikipedia says that autism is caused by DNA errors, so the only perfect cure would be, as with many other incurable diseases, DNA editing? I wonder if we come into the future where parents will be able to buy DNA fragments for example, for certain eye color or size, or for thin hands and legs, and collect future child's DNA from pieces. Or DNA will be considered non-copyrighted and owner of elf ears won't be able to sell his unique feature? Seems not fair to me. Also whether there will be pirate sites with DNA.
It's also worth noting that leucovorin is an important drug for counteracting the effects of methotrexate (chemotherapy drug), and this thinly veiled attempt to drive profit for Dr. Oz's company could create a shortage. This kind of thing has happened before, eg. with some of the bogus COVID treatments. In other words, this is not just unhelpful. It might actually kill people.
For the non-partisans who actually care more about autism in children than they do throwing ideological jabs, there are numerous interesting anecdotal reports from parents of children who have been trying leucovorin in the past year or so:
My hope is that this does lead to breakthroughs in understanding the mechanism for some types of autism, and perhaps even a "miracle" drug akin to how stimulants can radically transform the brains of many with ADHD.
Can you also have clinical trials performed under the Biden administration that "significantly improve communication with medium-to-large effect sizes and have a positive effect on core ASD symptoms and associated behaviors" about anything in any direction?
I am pointing out that your claim that this is just anecdotal is incorrect. There is published research showing medium-to-large effect sizes for exactly this treatment. Why do you think people were trying it on Reddit in the first place?
I agree, but that's a bit of a strawman. I didn't claim it's just anecdotal, I'm saying anecdotes from some reddit posts aren't useful in getting to the truth.
You can find Facebook groups filled with thousands of parents who report success with literally any wacky "treatment" you can think of, from chiropractic cures to cancer to making their children drink bleach to "cleanse parasites".
The cure is a simple pill, provided by a company with a long history of corruption, prosecuted for "promotion of drugs for unapproved uses, failure to report safety data and kickbacks to physicians in the United States".
A company that operates like that sees opportunity in this US administration.
Wondering which drug companies are trustworthy. Let's say if this was Eli Lilly or Pfizer, would that make the announcement blurb better? As in, we see it and say "oh wow, that's sounds great". I imagine if we insert any name in there it would still read just about the same?
GSK is one of the largest pharma companies in the world, created the malaria vaccine, the first HIV antiretroviral, amoxicillin, valacyclovir, and like a zillion other important drugs.
It's also not even an American company, despite your insinuation: it's British. This isn't some fly-by-night operation created by Trump or whatever.
How well will this pill work? I don't know. There is reasonably good research [1], (carried out during the Biden administration btw!) that a large percentage of autism is linked to folate deficiency due to autoantibodies that wreck your folate pathways, and that d,l-leucoverin bypasses those and restores folate to developing brains.
Complaining that it's "a simple pill" to me feels pretty anti-intellectual. So were antibiotics, so were antivirals, so were many other treatments for horrible diseases that just... are solved now. The fact that it's pill-shaped tells you nothing about the research it took to develop.
Practically speaking, no amount of punishment for fascists will ensure that another set of fascists won't rise up again in the future. There's far too much to gain by taking over political power for any deterrent to work effectively.
The best solution is to improve education to help people see through the bullshit that got us here. In particular, teach people that campaigning through memes, emotional appeals, and demonization of minority groups are big neon signs that the campaigning group does not have your best interests in mind.
Be careful around powerful words with meaning (see https://en.wikipedia.org/wiki/Fascism ). If we casually use these words to refer to people we simply disagree with - one day, when actual fascists start rising, we'll have taken all the meaning out of the language we rely on to identify them.
> when actual fascists start rising, we'll have taken all the meaning out of the language we rely on to identify them.
Isn't this a delightful Catch-22.
If you forewarn about a developing Fascist movement, you're simply taking away the meaning from the word until it's too late and the Fascists take power.
You cannot call anything Fascist, for there may be something more Fascist that may need the power of the word.
But ah! We couldn't call out their fledgling movement full of dog whistles and double speak so no one was aware enough to stop them as a fledgling movement!
We have lived in a period without significant fascism in power. Fascism doesn’t start with concentration camps and gas chambers, it builds up to them. It’s easy to dismiss because we were taught about just how bad it got but surely it’s not that bad _here_. The problem is, it’s only getting worse and ignoring it is how it got so bad in the past.
Fascists are continuing to rise right now. Googling “Hallmarks of fascism” gives us an AI overview:
Key hallmarks of fascism include fervent nationalism, authoritarian leadership, the suppression of opposition, and the use of violence to achieve national rejuvenation. …
We blatantly have all of those things from the current administration.
Also fascism doesn't require concentration camps and gas chambers, it just has little to prevent them. There have been fascists that also didn't involve gas champers etc. So to say only when we get concentration camps is there fascism is also just wrong
> We blatantly have all of those things from the current administration.
> fervent nationalism
I grant you, Trump supporters are heavily nationalist. Supporters of Winston Churchill in the UK were also fervently nationalist, when the UK was protecting Europe against actual fascists.
You cannot extrapolate fascism from nationalism.
> authoritarian leadership
An authoritarian regime grows the size of the state to cement its power. Trump is more of a libertarian, demonstrably reducing the scale and power of the state apparatus (DOGE)
> the suppression of opposition
Biden, and Biden-aligned judges weaponised the law against Trump, with spurious cases and fines. They tried to pin anything they could on Trump, in an attempt to prevent him becoming president.
Trump has not done anything similar against Harris, Clinton or Biden.
> the use of violence to achieve national rejuvenation
Nope.
Compare what happened in Democrat cities in the wake of George Floyd's death vs what's happening in Republican areas after Charlie Kirk's assasination. There was riots and looting, and Antifa intimidation of political opponents for Floyd. There are peaceful, respectful vigils for Kirk.
---
> Fascism doesn’t start with concentration camps and gas chambers, it builds up to them.
Trying to extrapolate a "fascist" future version of the current Trump regime is an example of the "Slippery Slope" logical fallacy.
> An authoritarian regime grows the size of the state to cement its power
| The OBBBA adds $170 billion for immigration enforcement agencies like Immigration and Customs Enforcement (ICE) and Customs and Border Protection (CBP) [1]
> Biden, and Biden-aligned judges weaponised the law against Trump, with spurious cases and fines
Trump has weaponized the DOJ [2]
Trump was convicted of felonies and other crimes; They were not spurious. He claims that he was targeted and a victim but he is also a well-known scam artist. "Accusation in a mirror" [3] fits much of his rhetoric.
> Trump has not done anything similar against Harris, Clinton or Biden
> Compare what happened in Democrat cities in the wake of George Floyd's death vs what's happening in Republican areas after Charlie Kirk's assasination
It's telling that you say "death" vs "assassination" in the two cases; George Floyd was murdered. The "riots and looting" you speak of are contested as being a separate act unrelated to the original message through peaceful protest. Maybe choose a better example... and maybe one that isn't as recently charged ... and one that isn't being widely compared to Horst Wessel.
> Trying to extrapolate a "fascist" future version of the current Trump regime ...
I'm not; It's already fascist right here, right now.
* Dictatorial leader - Trump ceded power at the end of his last term, and the opposition had a term. That doesn't happen in a dictatorship.
* Centralised autocracy - Trump has maintained the US political system with its checks and balances.
* Militarism - As with his previous term, Trump is more interested in creating peace treaties (e.g. the Abraham Accords) than participating in wars.
* Forcible suppression of opposition - Democrats have not been suppressed
* Belief in a natural social hierarchy - Trump believes in meritocracy, not any other order.
* Subordination of individual interests for the perceived interest of the nation or race, and strong regimentation of society and the economy - Trump is the archetypal capitalist - he believes all people should strive to produce with free enterprise, and have an ownership stake in the means of production via the free market. Fascist regimes, on the other hand, have a top-down regimentation of the economy akin to socialism (which is no surprise, as Musollini and Hitler were both socialists before they developed fascism).
Trump took to social media to denounce political violence on that day, but a small bunch of unorganised Trump supporters entered the Capitol during a protest. One person was tragically killed (a Trump supporter). The political transition happened.
> Trump has used emergency powers to do almost everything since the start of this term. This includes tariffs.
He's made a number of executive orders to achieve the actions he promised in the manifesto that got him democratically elected. Few politicians have been as true to their word as Trump, in terms of delivering the change that the people voted for.
Trump has not changed the political system. He has merely used its existing executive powers.
> He has increased funding to DHS and renamed the DoD to DoW (Defense vs War)
So what? What wars has he started? How does his record compare to the Democrat presidents that preceeded him?
> Melissa and Mark Hortman were murdered by a right wing nut job.
You found one incident of a nut job. That does not mean the Democrat opposition has been suppressed by Trump. And what do you say about the multiple assasination attempts on Trump?
It's clear where the political violence is coming from.
> violence on that day, but a small bunch of unorganised Trump supporters entered the Capitol during a protest. One person was tragically killed (a Trump supporter). The political transition happened.
Why are you ignoring that Trump riled them up way before all that? Are you unaware of that fact?
> January 6th, 13:10
> Mr Trump ends his speech with the words: "We fight. We fight like hell and if you don't fight like hell, you're not going to have a country anymore. So let's walk down Pennsylvania Avenue."
> Shortly afterwards a Capitol police officer calls for backup.
Can you picture Clinton, Bush, Obama, or Biden doing a rally like this, completely aware that the Proud Boys were in the crowd, even invited by the administration to be there? Picture that and tell us again how peaceful all of it was.
You are not arguing from verifiable fact by this point. These are Fox (Faux?) News (Entertainment?) talking points at best. Anyway ...
> One person was tragically killed
A simple search of "Jan 6th fatalities" disproves this; more people died.
> The political transition happened
Trump made sure to make this as difficult as possible. [1]
Trump claimed he won despite not winning. (Search: the big lie)
The fact that it happened is not evidence of him resisting it.
> Few politicians have been as true to their word as Trump
There are so many counter-examples to this, I just don't know where to start. How about the price of eggs and gas? How about resolving wars "on day 1" that he precipitated during his first term?
He actively sides with Russian propaganda relating to Ukraine. Ukraine is not the aggressor. The fight is over Ukraine soil... and Putin wants mineral rights to Ukraine. He perpetuates the loss of life in Ukraine and literally rolls out the red carpet for Putin.
There are plenty more counter-examples in this space. Just search for them outside of the Fox Entertainment universe.
> So what? (re: Department of War)
It's clear what he wants the organization to be. Take a step back and ask yourself why he would want this name change? Why devote resources to the name change? What message is he sending with the change? Think critically here because you and I can still both see this change and agree it happened.
> You found one incident of a nut job
I also found oppression of political opponents which is what we were originally discussing. While there are other examples, I don't need to extrapolate more to prove the original point.
> And what do you say about ...
Whataboutism [2] isn't a winning strategy anymore.
> It's clear where the political violence is coming from
It's actually less clear because he has removed studies of that very thing. [3]
For both of our sakes, please back your claims with verifiable references.
> A simple search of "Jan 6th fatalities" disproves this; more people died.
Only if you include drug overdoses and deaths due to natural causes, which happened after Jan 6th. Let's not clutch at straws.
> Trump claimed he won despite not winning
If he did, it wouldn't be the first time an election loser did this in recent history:
"Clinton repeatedly voiced her skepticism about Trump winning the 2016 election. She specifically said, "Trump knows he's an illegitimate president." She told The Atlantic "the election 'was not on the level,' and again ... she called Trump’s win illegitimate. She piled on to this by saying, 'You can run the best campaign, you can even become the nominee, and you can have the election stolen from you,' clearly referring to how she saw her 2016 campaign."
> How about resolving wars "on day 1" that he precipitated during his first term? He actively sides with Russian propaganda relating to Ukraine. Ukraine is not the aggressor. The fight is over Ukraine soil... and Putin wants mineral rights to Ukraine. He perpetuates the loss of life in Ukraine and literally rolls out the red carpet for Putin.
Trump cannot win, can he? If he ratchets up pressure on Russia, he's an aggressive warmonger about to start WW3. If he tries to negotiate and arbitrate with Russia (which will mean concessions, because that's how negotiations work) he's "siding with Russian propaganda" and "rolling out the red carpet for Putin
> RE Department of War: It's clear what he wants the organization to be. Take a step back and ask yourself why he would want this name change? Why devote resources to the name change? What message is he sending with the change? Think critically here because you and I can still both see this change and agree it happened.
Honestly who cares about the naming of a govt department? It might have had a more innocuous name prior to Trump, but previous presidents started more wars.
Actions matter more than words. I hope we can agree on that.
> Whataboutism isn't a winning strategy anymore ... For both of our sakes, please back your claims with verifiable references.
You raised the subject of political violence and insinuating that the Trump regime has specifically presided over violence. I explained that if you compare it to the actions of the Dems and their supporters, there is actually less violence from the Right than the Left. We must put patterns into context for an objective analysis.
Asking ChatGPT:
"Given the data I was able to locate, the number of well-documented assassination or attempted assassination cases against prominent figures in the U.S. over the past 20 years is relatively small (probably on the order of a dozen or fewer for high-profile figures). Among those, significantly more appear to have targeted right-wing figures (e.g. the Trump attempts, Charlie Kirk) than left-wing ones — though that does not mean left-wing figures were never targeted."
You are talking about not starting wars abroad but then dismissing death in our capital directly caused by Trump's actions. Please make this make sense. The people who died are in direct connection to Jan 6th.
eg: Brian Sicknick: The U.S. Capitol Police officer died the day after the riot, having suffered two strokes. While the medical examiner ruled his death from natural causes, they noted that "all that transpired played a role in his condition"
That's not straw clutching. That's two strokes from severe stress (physical and otherwise) because of the actions of Jan 6th rioters/looters/seditionists.
>> Trump claimed he won despite not winning
> If he did, ...
Stop moving the goalposts. Trump resisted letting go of power despite clear information that he lost. He also intentionally set things up to fail during Biden's administration. Yet another example: Afghanistan.
> It soared to 9.1% under Biden
Let's look at the shape of the graph, shall we? Notice how there is a steep climb driven by a global economic meltdown from Covid? Notice how it turns around? Let's compare to the global inflation rate [1]. Interesting how the global economy shows the same curve. It's also interesting how the US inflation rate ends up doing better than the global inflation rate.
Speaking of Covid, Mr "Covid is a hoax but let's inject bleach to fix it" set policies and rhetoric that resulting in 1.2 million Americans dying from Covid.
> Trump cannot win, can he?
It seems that we agree on this point. However, the position he chose to take was that of alienating our allies and embracing our enemies. Most people arguing from your position are unaware that Ukraine gave up its nuclear program under the express promise that Russia and the US would defend Ukraine against aggression eventually solidified by the trilateral statement. By doing so, he broke long-standing promises that have serious repercussions for other allies on the public stage.
Those promises were broken along with other destabilizing actions as part of DOGE.
> Honestly who cares about the naming of a govt department?
Again, then why do it? Why devote resources to making this change? What purpose does it serve? I know you don't want to think about it because it hasn't been digested under the reality inversion layer of Fox and friends. ... but actually why?
In politics, words can have as drastic effects as direct actions. If they don't matter then why utter them? Why pay teams of people to draft a speech? Why create technology at great expense that allows words to flow from one side of the planet to the other less than a second? Words definitely matter. Flipping a word in a department name from one meaning to its antonym not only sends a message to the world, but also to everyone in that department. Making that change to the department with the most funding in the US government and the largest funded military in the world ... is not a triviality.
> ... Among those, significantly more appear to have targeted right-wing figures ...
I don't care who was targeted, I care about who did the targeting. Being in a mosh-pit means you are more likely to get injured; Being injured/killed and being right-wing does not equate to the left instigating that violence.
Given that you can make ChatGPT say anything you want, please include the prompt.
Eg: Thomas Crook (the Pennsylvania Trump assassination attempt) was a registered Republican.
Looking at Trump's dialogue vs any other modern president, he speaks in incendiary language with other violent rhetoric to try and portray himself as a strong man. With recent advances in image/video generation, he has extended it to sharing imaginary videos of himself.
Be careful with this type of argument. It can be easily employed by “both sides” since the information each side is working from supports their own view and simply polarizes each side further.
I can see how you got there since I did use the term "both sides." My argument is that anyone can make the same claim towards any stance with the exact same passion. Making that claim simply polarizes the opposing viewpoint further. The discourse doesn't provide constructive feedback nor a reason outside of a bandwagon style pressure to conform to a different opinion. Arguably, a cult of personality is part of the problem in the first place.
HN tends to value academic discourse rather than emotional triggers. While both do exist here, academic discourse is generally the goal.
The discourse between people on HN is seen by many so the effects are more varied than just the active participants. As such, I’m loath to leave certain comments completely unchecked.
1: Police unions: Police in this country hold a monopoly on violence granted by the state. Police unions in turn have created a political bubble around the holders of this monopoly. By politicizing what should essentially be a public servant, we have made any accountability for these public servants very difficult to perform.
2: Breech of public trust can never be punished with a slap on the wrist. There cannot be "get out of jail free" sentencing for people of note. That deconstructs any trust anyone can have in the system, if there exists a class who cannot have the law applied to them.
3: A bill of Human rights, designed to encompass attempts to remove rights from certain people. A focus on positive rights, ie "the right to live", rather than negative rights "the right to cause damage to others via an existing right(property rights)".
4: Overturning of citizens united or the ability to punish corporations in an equivalent measure to how an individual can be punished. The fines must always be greater than what can be saved by exploitation via crime.
That's more or less a start. I'm no political scientist but to me these are big points of gridlock.
You mean the 'adults in the room' that pushed an unproven Covid vaccine from those same corrupt companies?
The Democrats wouldn't take the Covid vaccine when it first came out and called it the 'Trump vaccine' on CNN...until they came into power. Then they made a 180.
During the Covid era, you most likely lost your job and were censored from all major platforms if you had an opinion about the Covid vaccine that didn't match exactly what the government told us.
What would you think about getting this same treatment for this?
Please inform yourself. Both approved vaccines were rigorously tested. Unlike other vaccines, multiple phases of those tests were done concurrently, which is why it shipped in 6 months, instead of 3 * 6 months.
> The Democrats wouldn't take the Covid vaccine when it first came out
This begins to cast doubt that you will inform yourself, but from day 1, vaccine uptake was much higher, and continues to be much higher in blue states.
The only person who flip-flopped on vaccines was Trump, because he realized that his base is far too stupid to appreciate what Operation Warp Speed did for them.
“The Democrats wouldn't take the Covid vaccine when it first came out and called it the 'Trump vaccine' on CNN...until they came into power. Then they made a 180.”
I worry that once it turns out this doesn't actually work, there's going to be a revolving door of the 'next new Autism fix' and gradually kids with autism are going to be loaded up with more and more drugs of unproven effectiveness based on low-quality studies.
Does anyone with knowledge still pays attention to .gov sites ? Seems they are all filling up at different rates with pseudo science, or in other cases, removing science facts.
.gov is available to nonfederal US governmental entities as well. Those .gov sites run by states and cities which still believe in science are still worth paying attention to. Also even federal .gov sites remain reliable for certain topics like giving current statutory or regulatory text.
That was the last Trump administration, where the Secretary of Ed was married to the CEO of Amway. The current one is the former CEO of World Wrestling Entertainment, so I'd say it's more the Pro Wrestling administration.
I'm about 98% certain this is simply a ploy to put autistic people on a list for future abuses.
In today's political climate, nobody should be revealing their autism status to anyone remotely connected to any level of government. Nor should one trust any sort of medical advice or reporting from same. Our government is explicitly targeting minorities of all sorts for abuse and persecution.
Now is, unfortunately, the time to hide and weather the storm. That or flee to another country with a functioning society.
Please protect your autistic children and friends. Times are real, real bad for them right now.
> I'm about 98% certain this is simply a ploy to put autistic people on a list for future abuses.
Yes I think so. And I think they'll want to target people with autism particularly because people with autism are less likely to go with the flow, they question social customs and traditions that other people take for granted. Why do I have to wear a tie, what practical purpose does it serve? Why do I have to put forks on one side of the plate and knives on the other? Etc. Lower conformity to social norms, and a preference for precise and literal information.
This tendency makes people with autism somewhat resistant (but not immune) to most normal forms of propaganda. This scares power hungry politicians.
There is a blurry line that delimitates there "intolerent stiff society" from "chaos".
Social norms are also there to keep some coherence in the society. Some should (not can, should) be challenged but how and which is not ready to define.
Ties? Sure. What you wear? Sure. Whether you wear anything? Suu..euuh..re? Whether you wash yourself? We can challenge a bit yeah, but not too much, etc.
I like eccentric people (being a bit one myself) but I also acknowledge that some irrational social norms are needed for cohesion. I cannot quantitively say which ones, though.
>I'm about 98% certain this is simply a ploy to put autistic people on a list for future abuses.
I'm a foreigner, not even in the USA. Your politics are melting down but I feel like the FDA isn't tracking or seeking to harm you.
>In today's political climate, nobody should be revealing their autism status to anyone remotely connected to any level of government. Nor should one trust any sort of medical advice or reporting from same. Our government is explicitly targeting minorities of all sorts for abuse and persecution.
Pretty strong argument against socialized medicine. Here in Canada the government actively tracks each of these. For example to get the covid shot, they wanted to know about my autism, non-binary/trans etc. They werent just asking everyone this, I didnt bring it up because why would it matter? I was in their system. I also happen to know this data is being transferred out of country to CDSI; ASN 23498.
>Now is, unfortunately, the time to hide and weather the storm. That or flee to another country with a functioning society.
I dont think you need to flee the usa. Canada has drastically reduced migration, you dont want to come here. Europe maybe?
> I also happen to know this data is being transferred out of country to CDSI; ASN 23498
CDSI is Cogeco Data Services, Inc., a Canadian ISP, which later became Aptum, which in turn was acquired by Beanfield, also a Canadian ISP (the founder Dan Armstrong is actually well known in the internet community in Canada) that operates AS23498.
So I don't see how this would prove your data is leaving the country.
Um. This is weird. I know Dan (and the entire Beanfield team, at least the old guard of 10-15 years ago). Do we know each other? I was in 67 Mowat (aka Carpet Factory) off and on for a long while....
Pretty sure we don't know each other. I am a fairly recent addition to the country (2019) but we've worked with Dan and Beanfield during COVID when we put together a server for Folding@Home in our office to help them with the huge increase in load due to interest in the COVID research they were doing. Beanfield sponsors the pipe and we donated the hardware and rackspace. That server (the only Canadian one), by the way, is still running to this day.
We also came up with the WiFi@Toronto project which a paper says reduced the spread of COVID in those neighbourhoods by 14.4% (https://utoronto.scholaris.ca/items/f542d219-7abe-4918-846f-...). Again, Beanfield sponsored the pipe to exit all the traffic onto the internet and we sponsored the networking equipment and were the ones installing the APs on rooftops.
Just my non-scientific observations here, but it seems to me that most of the autistic people I've met tend to subtly call out people's bullshit more than the average person.
It seems like some powerful contemporary political entities are highly averse to being called out, especially if it's a subtle jab that goes under their radar.
No, we've been jumping sharks for quite a while now, on both sides of the aisle. This is more like Tony Hawk pulling a 900 on a half-pipe made of sharks.
> I find it strange that people aren't more supportive of an HHS secretary that actually gives a damn about autism
Perhaps it's because he characterizes people with autism as subhuman? And his attempts to do something about it are not grounded in evidence based treatment, but instead whatever foo-foo logic he's got in his head at the time.
If you told me, someone was looking into curing, say pancreatic cancer, I'd be happy, but if the same person was saying people suffering from pancreatic cancer are not fully human, and also that the cure is <insert disproven nonscientific cure>, not only would I no longer be happy, I'd be upset. The person is wasting valuable scientific funding that _could_ be going to funding a cure, and is instead denigrating people and redirecting attention.
He didn't call them subhuman. That's just propaganda taken out of context to try to diminish him. I'm sorry that it has convinced some people that the smear is true. It's weird that on one hand, you think he thinks autistic people are subhuman, and yet he's provably the only person in government in a position of power fighting for families suffering from autism.
> The number of autistic children being diagnosed is RISING it's not falling
Over time we got better at diagnosing it, that’s all. Mildly autistic people clearly existed in the past but were just considered odd or nerdy or something and now we can better diagnose and support those people
Neither. Autism is something that is very important to me, mainly because of my friend's experience with his two autistic children and the fact my child was mistakenly diagnosed as autistic. It turns out he was suffering from generalized anxiety disorder and misdiagnosed by a couple of psychiatrists.
It's sad that you think that people with opinions other than yourself is engaging in "flagrant rage baiting."
Can you support your claim about tens of thousands of Canadian children on a waiting list for treatment? I'd love to see what kind of sources you (or your hypothetical friend) are using. Here's what the Canadian government has to say.
"Health Canada has not approved any medications for the treatment of autism."
Are you yourself confusing diagnoses for autism with diagnoses and (this time real) treatments for other conditions? That's the most charitable explanation I can think of, and it still seems a bit hypocritical. Maybe that's where the "flagrant rage bait" accusations come from.
So good to see them actually addressing the Autism epidemic. Some people are still parroting the "Autism has not increased - it's just a difference in diagnostic criteria" BS.
Like many things where what constitutes base data changes and hence graphs change pretty radically, this can be cleanly explained by diagnostic drift. Here's a detailed breakdown: https://www.cremieux.xyz/p/how-to-end-the-autism-epidemic
While it's true that parents and schools have a weird relationship with ASD, with some parents doing anything to refuse the label no matter how apt, at other times with officials and parents going out of their way to do things like label kids with symptoms of severe trauma as having ASD, along with a long tail of higher SES parents who see claiming various special ed needs (not just ASD ones) as a way to get more resources for their children, particularly in states where they can get additional vouchers or payments with a label, these things don't really change a ground truth: severe autism is not easy to hide or easy to fake, and cases are increasing.
IMO diagnostic drift is maybe a fine thing hem and haw about when it comes to mild cases.
But it's basically a form a bike shedding because the severe cases are so incontrovertible and so much more common than they used to be. You can't claim that kids with severe cases are okay and just out to get money because they're so obviously and clearly not well. And schools have gone from maybe having none to a couple per grade to needing whole classrooms or even schools to safely handle high severity autism over the last 50 years.
You could maybe instead claim that "when achieving any semblance of normalcy is impossible, society shouldn't spend so much effort," but that is usually not a well-received message because it sounds like the forced institutionalization or incarceration of the mentally ill or locking them in bedrooms to be forgotten.
Similarly, there are some situations where the repercussions of severe early childhood trauma get diagnosed as autism, but these are also situations where you'd still have a massive service need, so there's no cost reduction to be had, just a proportionally small chunk of misdiagnosis.
I will ask someone more knowledgeable than me about this when I have a chance, but I think it became common to look at the severe cohort under the label of "profound autism," a few years ago, but I think has a tendency to be listed as a % of overall ASD cases rather than a separate rate.
But also noted that they find a lot of the research lacking - they view research, even that using the "profound" label, as not doing a sufficient job of mapping severity bands: the DSM now has three levels of severity, but research going back decades is hard to map to the evolving buckets. And they view the profound label as probably too narrow for fully encompassing kids who needs high levels of support in the educational setting.
Friend also says the way they would probably look at it in their school district is by label and support level: ASD, and then whether they need para pro support, or require a self contained classroom (IE a specialized classroom environment), and in terms of the ASD labels needing para pro or self contained setting going up in quantity even while district overall enrollment declines. And those support levels pretty much guarantee that either kiddo has severe behaviors or parents have lawyers, and the vast majority of parents don't have lawyers.
They attribute some of this to non-exceptional-education kids being drawn off to charter schools (which despite theoretical obligations basically do a good job of not providing real services for special needs kids to get them back to publics rather than reducing profits), but not remotely all of it.
Separately, one of my relatives has kiddos with what I'd colloquially call severe autism (like I don't see their kids ever living independently) and their district tried to move a big chunk of their elementary high support kids to a middle school because they "ran out of space" for elementary self contained / autism classrooms.
The wording, my emphasis added, certainly suggests this is a new med for CFD even though the title mentions Autism symptoms, not CFD
Search for the word autism in the release and tell me if you think this treats what they suggest in the title. It would be every other word if they believed it.