A Controversial Autism Treatment Is About To Become a Very Big Business (vice.com) 141
An anonymous reader quotes a report from Motherboard: At Duke University's Marcus Center for Cellular Cures, parents can enroll their children into a number of clinical trials that aim to study the effects of cells derived from umbilical cord blood on treating the effects of autism and brain injuries; adults can also participate in a trial testing whether cord blood can help them recover from ischemic strokes. And when parents can't get their children into any of these clinical trials, particularly for autism, they often opt for what's called the Expanded Access Program (EAP), in which they pay between $10,000 and $15,000 to get their kids a single infusion. All of the trials use products derived from human umbilical cord blood, which is a source of stem cells as well as other types of cells. The autism trials are using a type of immune cells called monocytes, according to Dr. Joanne Kurtzberg, a well-respected Duke professor who's conducting clinical trials into whether cord blood can help with autism, and who has been researching stem cells since the early '90s. (On ClinicalTrials.gov, however, these trials are listed as using mesenchymal stromal cells, which are a completely different type of cord blood cell.)
Now, a for-profit company called Cryo-Cell International with ties to Duke researchers has indicated that it plans to open clinics promoting these treatments, under a licensing agreement with the renowned North Carolina university. In their investor presentation, Cryo-Cell said they plan to become "an autonomous, vertically integrated cellular therapy company that will treat patients." Duke and Cryo-Cell's rush to monetize a procedure before it's shown to have solid benefits has created concern, though, across the community of scientists, clinicians, and medical ethicists who study autism treatments. The hope is that these cord blood infusions can improve some autism symptoms, like socialization and language, or decrease the inflammation that some parents and clinicians think might exacerbate autism symptoms. Early study results, however, haven't been very promising.
A large randomized clinical trial, the results of which were released in May 2020, showed that a single infusion of cord blood was not, in the words of the researchers, "associated with improved socialization skills or reduced autism symptoms." This is why Duke's latest move comes as such a surprise: The university and Cryo-Cell have told investors that they're planning to open a series of "infusion centers." At these clinics, Cryo-Cell will use Duke's technology and methods to offer cord blood treatments for $15,000 per infusion. In an exuberant presentation for investors (PDF), Cryo-Cell said it estimates an annual revenue of $24 million per clinic; it hasn't disclosed how many clinics it plans to open. At least one will reportedly open in Durham, North Carolina. The move follows a June 2020 announcement that Cryo-Cell had entered into an exclusive patent-option agreement with Duke, allowing it to manufacture and sell products based on patents from Dr. Joanne Kurtzberg.
Now, a for-profit company called Cryo-Cell International with ties to Duke researchers has indicated that it plans to open clinics promoting these treatments, under a licensing agreement with the renowned North Carolina university. In their investor presentation, Cryo-Cell said they plan to become "an autonomous, vertically integrated cellular therapy company that will treat patients." Duke and Cryo-Cell's rush to monetize a procedure before it's shown to have solid benefits has created concern, though, across the community of scientists, clinicians, and medical ethicists who study autism treatments. The hope is that these cord blood infusions can improve some autism symptoms, like socialization and language, or decrease the inflammation that some parents and clinicians think might exacerbate autism symptoms. Early study results, however, haven't been very promising.
A large randomized clinical trial, the results of which were released in May 2020, showed that a single infusion of cord blood was not, in the words of the researchers, "associated with improved socialization skills or reduced autism symptoms." This is why Duke's latest move comes as such a surprise: The university and Cryo-Cell have told investors that they're planning to open a series of "infusion centers." At these clinics, Cryo-Cell will use Duke's technology and methods to offer cord blood treatments for $15,000 per infusion. In an exuberant presentation for investors (PDF), Cryo-Cell said it estimates an annual revenue of $24 million per clinic; it hasn't disclosed how many clinics it plans to open. At least one will reportedly open in Durham, North Carolina. The move follows a June 2020 announcement that Cryo-Cell had entered into an exclusive patent-option agreement with Duke, allowing it to manufacture and sell products based on patents from Dr. Joanne Kurtzberg.
How is it even supposed to work? (Score:5, Insightful)
What's the theoretical mechanism of action?
Re:How is it even supposed to work? (Score:5, Insightful)
Fear, a parent's fear is a powerful mechanism
oh mechanism of the disease... I doubt if there is any one disease, apparently folinic acid is effective for some percentage based on genetic factors, and 'inflammation' has been bandied about for years without any real cause identified
but, fear will definitely drive parents to the infusion centers in droves, no problem making money at least
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Not so much fear as a combination of hope, sunk costs (my kid has autism so it needs a babysitter which cost me more than $15k a year), and some more.
All in all, it's probably a con
Re: How is it even supposed to work? (Score:2)
Wow did you just refer to your kid as âoeitâ?
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Wow did you just refer to your kid as âoeitâ?
Gender neutral. Remember English is not the first language of many posters here, and pronouns, like prepositions, can be tricky sometimes.
Wow, did you just try to use Unicode on Slashdot?
Re: How is it even supposed to work? (Score:2)
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I forgot to put the quotation marks.
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Re: How is it even supposed to work? (Score:2)
baby sitting costs 3 times that here, and it's necessary regardless of where your kid sits on the autism spectrum.
Re: How is it even supposed to work? (Score:2)
Fear, and 'medicating' kids especially boys to get rid of normal behavior is what turned Anerica's school system into one of the biggest drug pushers the world has ever seen. With devistating results. Like Columbine, which the drugs' side effects played a big role in Eric Harris's behavior.
If when hear "experimental medication" and "big profits", my brain instantly screams "Run the other way, quick!". I wouldn't trust these profit seeking, drug pushing quacks with assembling my fast food burger.
Re: How is it even supposed to work? (Score:2)
Ick..sorry this post turned out to be such a grammatical train wreck, but you get idea.
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Fear is the overriding force of people making Bad, Evil, or Uninformed decisions. When you are afraid of something, regardless if that fear is justified or not. You are going to gravitate towards the people who share/recognize your fear, and often fall for any attempt to alleviate it.
Lets say current fashion trends now make wearing blue socks, something that is out of date.
One could hoard all the blue socks they can get their hand on, because they are afraid they will no longer be able to get blue socks ag
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Yep: Deep Space 9 actually dealt with this, and featured a major character who had learning disabilities that were healed with illegal genetic manipulation [youtube.com].
Abelism, it's called, and most parents of special needs children have to come up against it at some point. I had to with my son. I had to resign myself that an autistic who was reading by age 3, would be raising a person with cerebral palsy who is functionally illiterate at age 18.
But with every disability there are gifts- gifts that would be wiped ou
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lol, what a fucking defective, maybe you can blame all of your failings on any boogie man you want, but rational people actually look at evidence
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Poe's Law is strong in this one...
Re:How is it even supposed to work? (Score:5, Insightful)
What's the theoretical mechanism of action?
That's the neat thing, it doesn't.
The potential alone will be enough to convince desperate caregivers to hand them thousands of dollars.
Re: How is it even supposed to work? (Score:2)
Once again, I don't trust these quacks to assemble a fast food burger.
It seems clear by TFS that it's profits first, and the current hype and fear over autism is being seen as a potential cash cow for these people. Who knows what they are covering up in regards to this 'wonder treatment'?
I DO NOT TRUST THEM. Say what you will, but my danger alarm is screaming.
Re: How is it even supposed to work? (Score:4, Funny)
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Brains are very plastic and highly trainable and are at least partially able to reorganize functions, especially younger ones - that is an established medical fact.
Yes it is damage, in the same way leaving a chain around a tree to long effects its growth, it makes the tree less fit. Autism is not a gift. Nobody would deny that autism affected people have achieved great things, some of them that might well be attributed to secondary effects of their malady. Nobody would deny that afflicted individuals have n
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I guess you are the future ffsisthisnametaken - the Zoomer, know it all libtard puke, comes accorss immediately with you.
Re:How is it even supposed to work? (Score:4, Insightful)
So it's theorized that autism is a specific type of neurodevelopmental damage from an auto-immune response....by monocytes:
https://www.jneurosci.org/cont... [jneurosci.org]
I'm actually not sure how more monocytes are supposed to help. But I don't know anything about neurology.
Re:How is it even supposed to work? (Score:5, Informative)
It is far more likely that autism is a range of conditions that have similar symptoms, each with specific triggers or knocked-out nutrients
In this study Folinic acid improves verbal communication in children with autism and language impairment: a randomized double-blind placebo-controlled trial [nih.gov] a treatment (increased doses of folinic acid, a common nutrient) was developed for a significant group of autism spectrum disorders with children were subtyped by glutathione and folate receptor- autoantibody (FRAA) status.
Effectiveness was determined by improvement in verbal communication, as measured by a ability-appropriate standardized instrument, was significantly greater in participants receiving folinic acid as compared with those receiving placebo, resulting in an effect of 5.7 (1.0,10.4) standardized points with a medium-to-large effect size (Cohen’s d=0.70)
This may circle back to the auto-immune studies like Folate receptor autoantibodies are prevalent in children diagnosed with autism spectrum disorder, their normal siblings and parents [nih.gov] .
My money is on specific affected nutrient uptakes and mediating them with specific doses over simply flooding the body with another humans precious cord blood fluids.
The New Snake-oil (Score:2)
I'm actually not sure how more monocytes are supposed to help. But I don't know anything about neurology.
That doesn't matter: as long as you can make up a story that sounds medically plausible that seems to be enough. Why wait for all the tedious data to actually show whether your treatment works when you can charge for it now?
A century or so ago they would have been peddling snake-oil which people bought because it might work and they desperately needed hope. This is exactly the same. Today's medical consumer is a bit savvier so you sell the treatment as being part of a medical study - there is still no e
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What's the theoretical mechanism of action?
It's too high for visa. Probably a mix of checks and medical loans like CareCard.
Simple (Score:2)
Just don't inoculate yourself and your kids.
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Just don't inoculate yourself and your kids.
Inoculations don't cause it. They've debunked that decades ago.
Looking back I should have put a smiley in my post
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What's the theoretical mechanism of action?
Shareholder value.
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What's the theoretical mechanism of action?
It is called Fearful Spamming. I want your money, honey. And even if you or your child is not autistic I want your money, honey.
For-profit health care (Score:4, Insightful)
Not very surprising when you have a huge for-profit health care system. You would be naive to think this is simply an "expensive treatment for X" which could happen just anywhere in the world.
Think Silicon Valley, could internet giants like Google happen just anywhere in the world? No, Silicon Valley is unique in the way it has the right VC money, the right tech people, and the right startup culture. These things emerge through time in the right environment and cannot be mandated, else we would have seen SV replicated everywhere in the world.
It is the same with big pharma. After decades of for-profit health care, the entire ecosystem of money, people and culture now exists to seek profit from anything people would buy. Pharma making more money does not necessarily means better health for more people, it could also mean treatment for any sickness, real or perceived, that people are willing to pay. It is especially despicable to target children because most parents would pay almost anything for their children, it is a direct exploitation of human nature for profit.
Perhaps Americans should reflect if this is the direction they would like to keep going.
Re:For-profit health care (Score:5, Insightful)
This isn't about healthcare system. This is about the horror show that is a family with an autistic child. It is a genuine deep and painful tragedy that just keeps going and going for as long as parents are alive.
There's a horrific truth that is understood by parents of a low functioning autistic child. "My child will survive for as long as I live". Because that's what often happens. And every day there is indeed survival rather than living. It's an utter desperation for every hour of every day of every week of every month of every year, until the end of your natural life.
So it's no wonder that any fix, no matter how unlikely is going to have many takers, as long as its even remotely affordable.
Problems with cost of US medical system are mainly related to curable/treatable illnesses that cost far more than it should to get treated. It's not so much with incurable/untreatable, difficult to manage lifetime disabilities, because every systems has significant problems handling those.
Re:For-profit health care (Score:4, Insightful)
No, since the treatment has not been shown to be effective (in fact it looks like it's not effective), it absolutely *is* about the healthcare system exploiting the very reasonable concerns of parents for profit rather than their benefit.
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Fundamental assumption that must be true for this to be about "US healthcare system": This sort of thing doesn't happen in other healthcare systems.
Meanwhile in Germany, where homeopathic products is sold in apothecaries next to actual medicine. Damn, US medical system is in Germany. Meanwhile in PRC, where Traditional Chinese Medicine is held in higher regard and more available than actual medicine. Damn, US medical system is in Germany. Meanwhile in South Africa, where Zulu Witchcraft is considered a viab
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Fundamental assumption that must be true for this to be about "US healthcare system": This sort of thing doesn't happen in other healthcare systems.
Meanwhile in Germany, where homeopathic products is sold in apothecaries next to actual medicine.
Meanwhile in PRC, where Traditional Chinese Medicine is held in higher regard and more available than actual medicine.
Meanwhile in South Africa, where Zulu Witchcraft is considered a viable alternative to actual medicine.
How many of your examples cost 10,000 -15,000 $US a pop?
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When adjusted for purchasing power? All of them.
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For what, that markets tend to adjust to purchasing power of people accessing them?
Do you also ask citations for 2+2=4?
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Homeopathetic "cures" are fairly cheap. But still the most expensive way to buy sugar.
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Personally I don't really care. For something that doesn't have any medical properties beyond the placebo effect, they're too expensive, unless they charge about 50 cents a kilo.
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One nit to pick: Traditional Chinese medicine is not in the same category as homeopathy, since many plants are pharmacologically active. They're both dogmas, but one is based on magic and the other is based on observations. Though I won't deny TCM contains a lot of BS and/or treatments that haven't been proven effective.
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Ok, not all of TCM is bullshit. But can we at least agree that stuff like Rhino horn is bunk?
By that logic, I can as well start to trust my wise woman with the various plants cut at the right moon phase again. Yes, some of their stuff has medical properties, but the whole mumbo jumbo around it is bullshit, and you're still better off with traditional actual medicine.
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By that logic, I can as well start to trust my wise woman with the various plants cut at the right moon phase again.
At the time when allopathic medicine deliberately diverged from naturopathic medicine the two were about equally effective, and the common saying was that with naturopathic medicine you died of the disease while with allopathic medicine you died from the cure. If we had applied as much science to naturopathic medicine as we have to allopathic, one wonders what the results might have been. Probably we'd still have been screwed because we'd still have been driving plants to extinction left and right before we
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You'll find that a lot of the cures we have today are derivatives of various natural compounds. Mostly because it's pretty expensive to fully synthesize complex molecules.
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Yeah, that's exactly what I'm saying. The village wise woman is more trustworthy than literal magic. And while rhino horns and tiger penises make the news, typically it's just foul tasting herbs, mixed in a combination intended to target the symptoms.
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You seem to think that homeopathy is not "based on observations", as that is the distinction you're drawing.
You're wrong. It's just that just like with TCM and other "traditional medicines", observations are typically subjective, faulty and often downright falsified.
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As a parent of an Autistic son I totally reject you characterization of autism.
Your description does not agree with my life nor does it reflect the situation me and my wife are seeing around us (and my wife is treating ASS professionally)
Yes an person with ASS requires attention for his sensitivities each and every day. Yes ASS persons have a normal life expectancy. Yes getting the ASS diagnosis for your child does feel like a life sentence when you first hear it.
But describing it as a tragedy and basically
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>But describing it as a tragedy and basically stating that in order to find a 'cure' anything goes? No. I reject that line of reasoning entirely.
Do what you feel is necessary to survive your personal circumstances. But don't you dare minimize it, because for every one of you who can draw sufficient strength to handle his personal tragedy, there are a dosen of parents that are at the end of their rope. Some of them literally.
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.. there are a dozens of parents that are at the end of their rope. Some of them literally.
I. Know.
Don't you think I have been 'at the end of my rope' numerous times?
But so are parents of children with the down syndrome, paralyzed, with a CVA...
The point is: how can we help a family in such a situation? I would like to plead for compassion, helping in small ways and providing the best medical and social care possible.
For me, commercializing a very expensive, unproven treatment and pushing this to strained parents is not helping. It is abusing the desperation of people in need for commercial gain.
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>The point is: how can we help a family in such a situation?
The most typical kind of help is where you have an organisation that will have professionals and volunteers assisting them take care of severely autistic children for a while, to give parents time maybe once a week, maybe once a month to just go and be on their own. Have reprieve from that constant terror at home that something will set the severely autistic teenager or adult off. This requires significant amount of resources, which society will
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This isn't about healthcare system. This is about the horror show that is a family with an autistic child. It is a genuine deep and painful tragedy that just keeps going and going for as long as parents are alive.
That's exactly the problem with a private healthcare system - a horror like this is a perfect way to extort money from people in a way that salaried healthcare workers would not be/are not motivated to do.
Any time there's some case of a child with a rare untreatable disease, private healthcare crawls out of the woodwork to offer expensive useless regimes of drugs, radiation, or just plain vapourware, some of it quite invasive and painful.
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Ah yes, the "private medical system". Like the traditional Chinese medicine offered as the main public medical system offering in China. Like the homeopathy offered as a part of public medical system in Germany.
It's better to stay silent and let others think you an idiot, than open your mouth and remove all doubt.
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Ah yes, the "private medical system". Like the traditional Chinese medicine offered as the main public medical system offering in China. Like the homeopathy offered as a part of public medical system in Germany.
It's better to stay silent and let others think you an idiot, than open your mouth and remove all doubt.
Ooooh, you cherry-picked two examples - one of which is a very very minor player - to balance out the whole of private medical healthcare's routine and enormous industrialised blackmail system.
How very clever of you.
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Never thought you'd be so self aware.
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Private healthcare in Germany also pays for these since idiots are also paying customers. And even though the public healthcare is regulated by the government, it is essentially operated as multiple non-profit companies that still want as many customers as possible, even if they are idiots.
Comment removed (Score:5, Interesting)
Re:For-profit health care (Score:5, Insightful)
Yes, and you can take mine from my cold, dead hands. My income pretty much depends on my "broken" mind. Yes, it causes me problem, yes, my social life (ha, ha...) is shot, but yes, I can bank my "differences".
I can interface with computers in ways that few others can. Much, much more efficiently and effectively than I can with humans. Frankly, 2020 was one of the best years of my life, and I'm not kidding here. Because I did only rarely have to coexist with humans. Having to spend time with humans and pretending to be one of them is taxing. Exhausting, even. Not having to do this and still providing my professional functions was relaxing in ways I didn't even know were possible.
And yes, I do hope that the anti-vax idiots stay strong and keep the infection rates up to ensure I can stay in my home office for as long as possible.
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Frankly, 2020 was one of the best years of my life
It feels really damn good to hear someone else say that. I loved 2020 (and 2021 was not too bad either). I'm not autistic, or at least I was never diagnosed (I would speculate I could be diagnosed somewhere on the spectrum, and one of my children is diagnosed).
I've been baffled by all the people who talk about how bad 2020 was. I got to take a lot of walks, I didn't feel guilty about ordering groceries delivered, I undertook a planned period of learning and practice and seriously upgraded my cooking and kni
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You lost your beautiful and fulfilling life, have you? Well, allow me to regale and inspire you with a variant of what I was told when I did not want to go out and "enjoy" the presence of humans: "Don't act like it's the end of the world when you just have to be apart from humans for a few moments, you'll enjoy it if you just try it! And if you don't, you're probably doing it wrong, sitting inside is what everyone but you likes, so I guess YOU are the problem."
Did it help you?
It feels really great to have a
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After reading up on it, it seems being on the autism spectrum isn't specifically the same thing as being autistic in clinical terms.
Didn't know that (also not native English). Anyway I got my first moderation as Troll, maybe because I sounded angry instead of curious? I will probably never understand.
Re:For-profit health care (Score:5, Insightful)
>low functioning autistic child.
"Now let me complain about being a high functioning autist, and how I it makes it slightly inconvenient for me if you call autism a disability".
No. I've seen several families with a low functioning autistic child. Just the incredible difficulty in handling extreme consequences of physical reactions of such a child to unexpected stimuli alone is nightmarish. Ever seen a teenager start smashing his head into the wall and destroy furniture in the kitchen because kitchen table and chairs got moved around because guests invited by another sibling set up a board game the previous night and didn't put it all back exactly as it was before before the morning came and said teenager woke up?
I have. And fuck you for minimizing it, and the suffering that handling this sort of thing on a daily basis until death offers release from that nightmare does to parents and siblings. That friend of mine had his schooling opportunities destroyed, because his mom couldn't handle/control his autistic brother alone when he grew physically strong enough to the point where she could not longer safely physically restrain him. But she understood that he wouldn't be able to handle moving to a care home, where he'd likely have to spend significant amount of time physically restrained to prevent damage to himself and those around him. So he had to throw his opportunities out and stick around to help her. And it was clear to pretty much every one of us in our group back than that this brother would live about as long as the mom would. Because once she was gone, he'd go into a care home and would likely not be able to survive that kind of change in his surroundings for long. And she wouldn't make it to old age. She drank far too heavily because of his condition just to keep herself sane to survive to old age.
This is not "I'm just different". This is a severe to extreme, lifelong and incurable disability that is far more debilitating and damaging to the family of said child than being born without legs, or arms or deaf or blind. And I'm pretty sure you're not going to try to claim that "people born without legs are not disabled, they're just of different mobility".
This is something that must be recognised as a severe disability, so that meaningful aid can be rendered to such families when reasonably possible. Trying to normalize this in the name of "I'm an autist and I'm just different" is cruel and malicious to extreme to such people. You as a highly functioning autist may be disabled enough not to understand just how cruel and malicious you are being in doing this.
But the reason why that post was modded to +5 insightful is that people who do not have your disability do. Because that's one of the things that tends to be diminished even in high functioning autists. Ability to understand other people and therefore empathize with them.
Re:For-profit health care (Score:5, Insightful)
That's a heartbreaking story.
And I know that brothers and sisters of autistic children are often forgotten, and that is a big problem. His mother should not have required her other child to help her on a daily basis. If she knew that having the table in exactly the same position is so vital, this should have been discussed with him (and with the brother) beforehand. Receiving visitors with an autistic child is never easy.
I don't want to minimize the pain this family has gone through but as a parent of a son with ASS that started as pretty low functioning I know the importance of respecting the boundaries of your child. If you create a safe environment for your child you can start working on dealing with everyday problems like e.g. how to deal with visitors.
I have 2 remarks on you story:
* How can you help a family in a situation like this? Is your characterization of their child as 'debilitating' and their situation as 'cruel' helping? Is having them pay thousands of dollars on a cure that has not shown any meaningful results helping?
* I must say that this is not a typical story. My wife treats many families with ASS children and violence is mostly not the problem. Self harm ('smashing his head into the wall') does happen and having a general crisis is also a common theme. I must say that you story seems more typical someone with the down syndrome (which proofs that Autism/ASS is not the only diagnosis is that can affect a family thoroughly).
Lastly my question is: what happened to your friend? I sure hope he and his mother found a way to give him the chances in life he deserves. For me it is a question of not giving up. Yes such a scene can be frightening. And may lead to an attitude like 'this must stop', 'this is unacceptable'. But at the end of the day you still want the best for your kid and you need to find a way to deal with situations like this. But it may require some adaptations and special care.
Re:For-profit health care (Score:5, Interesting)
>How can you help a family in a situation like this? Is your characterization of their child as 'debilitating' and their situation as 'cruel' helping? Is having them pay thousands of dollars on a cure that has not shown any meaningful results helping?
More public funding for helping alleviate the worst aspects these kinds of problems. For example, a temporary custody of such children/teenagers/adults to grant parents temporary reprieve and rest is absolutely critical. Which requires public funds allocation, which requires not minimizing this problems because "but muh feelings!"
And my point was to debunk the nonsense being peddled by the single issue propaganda nonsense spouting "US medical system" troll. This has nothing to do with US medical system. Problem with children with these kinds of problems are everywhere where they are, and they're very difficult to manage. Because this is the sort of human tragedy that breaks people. And as there is no cure, all you can do is to try to help those caught in the tragedy to not be broken by it.
Because there's a reason why people across the world are willing to pay for these fake "treatments". It's not stupidity. It's desperation. Those are the people who are genuinely trapped in their situation, and are willing to try any hail mary, no matter how unlikely, as long as they can afford it.
It's why those treatments are usually priced to be in the price range of the kind of people who would be with those children and try to keep them at home rather than send them to a care facility could probably afford in the region they're being sold. In US, that would be in tens of thousands USD. Scammers know how to read the crowd. They're the opposite of autistic.
And I'm not saying that autism is the only one with those sorts of outcomes for families. Children with severe development disabilities like Down's are also in the same category. They're just a whole lot less likely to live long enough to still be in the care of their parents as adults, as most forms of Down's come with plethora of other health complications that are extremely detrimental to one's longevity. This is not so for autists as far as I know.
As for my friend's family, you really do have a mindset of an upper middle/upper class from an anglo country, where children owe nothing to the parents and parents should just be able to afford whatever is necessary. This is not how things work in most of the world, where familiar bonds are far more reciprocal and access to capital is far more constrained. His mother didn't really force him into it as much as he himself did. He did his duty to his family. He quit school after 9th grade, found a shit job that paid enough money to help his mom make ends meet and as far as I know got a place near where his mom lived to take his brother in for a day or two every week to take a load off his mother.
I've no idea what happened after, because I went to lyceum and university in a different city. That was time before the internet. My guess, he got a typical lower working class man's life. That of fulfilling his duty to his family before his own needs. And drinking heavily to tolerate the harsh reality.
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Dear Luckyo,
I don't know where you live but I feel for you and understand your anger. I feel it too and I find your story extremely upsetting. My deepest sympathy with you, your friend and his family that was clearly struggling.
My point: for me this is a prime example of a failing healthcare system. If you read back your own post I hope you can recognize that what this family was missing was not some sleek sales person extorting money from this family for extremely expensive treatments with questionable o
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Good on ya, mate, and burning joss for that poor bastard friend of yours and his family.
Meanwhile, I can't help but wonder (and refuse to look it up) what the going rate is for umbilical cords these days. And infusion centers in this dearly celebrated center of high tech morality and medical wonders, Nawth Ca'lina? Godz, I can hear the howling Fundy mobs from here!
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And this is what addiction to politically correct virtue signalling does to people. It makes them callous, cruel and utterly psychopathic, grabbing onto "but the stigma" narrative, as if admitting that the problem is the problem is the actual issue.
Rather than the obvious human tragedy that is infinitely more serious than your feelings.
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I have a schizoid personality disorder which has a lot of traits of high functioning autism (this is, in fact, even called schizoid autism), just with different roots. It is who I am and I hate it. If there was a magic pill that would cure me, I'd take it in a heartbeat.
Re: For-profit health care (Score:5, Interesting)
You are aware that autism can in extreme cases mean "never acquires language, and we're not sure they understand other people exist"? It isn't all just cute quirks and talents.
Maybe it was a mistake to call it all the same thing. But I guess the theory is that the same thing which (presumably) makes it hard for you to model and predict other people's feelings and reactions, in other people go to such an extreme that they never learn to communicate because their brains never catch on to the idea that there may be anyone to communicate with in the first place.
Does that seem like a good life to you, being unaware of other people's existence, having no language, and being utterly incapable of taking care of themselves?
If not, maybe you should be open to the idea that alleviating at least some symptoms of autism should be a legitimate thing for medicine to try at.
Many higher-functioning autistic people, too, wish that they could read emotions and understand other people's motives better than they currently can. (Hell, I'm not autistic, and I would love to have been better at it). If there was a medicine you could take to better understand other people, who wouldn't take it?
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It's a very complex situation.
Autism is a spectrum, some people function better than others.
Many of the problems autistic people face are due to wider society not understanding or accepting them.
The parents of autistic children come from all backgrounds, some rich and some poor, some with plenty of time to spend with the child and some needing a lot of assistance. Which raises further questions, like how do you balance the rights of the child and the needs of the parents?
Is it even right to "cure" something
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The parents of children diagnosed as autistic tend to be wealthier, and white. According to the NIH analysis, it's due to racial bias in diagnosis.
https://www.ncbi.nlm.nih.gov/p... [nih.gov]
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The autism spectrum is pretty wide. It includes people that were previously diagnosed with Asperger's syndrome now, which is far milder than what many people think of as autism. It is more along the lines of extreme introvert, but often something that can be worked around to be able to function in society.
Dude, ... chill. (Score:5, Insightful)
I have autism, it is who I am, it does not need to be 'cured'. I am different, but I am not ill. Just imagine Elon Musk being 'cured' as a child.
Yeah, we know, we get it. Everybody here is aware that autism is a spectrum. Elon Musk has crazy drive which will probably get us to mars. Nice stuff. You're a functional autist, with some traits that regular people probably consider quirky. Awesome. I'm a functional ADHD person. I live minimalist and am more active that my peers at 50+. That's actually a bonus. I ride my ADHD tiger and it's working for me. Mostly. That's cool too. One of the metrics for mental illness is the amount of suffering of the person displaying certain behaviours. If my ADHD has me social dancing for 10 hours at a time but I'm hugging cute sexy ladies all the time and enjoying myself I'd call my activity-drive an advantage rather than a condition. Cue the old joke: "I don't suffer from mental illness, I'm enjoying every moment of it."
However, there are people that are so autistic, that they don't function and can't survive without help. In a medieval society they'd already be dead. That's what parent was talking about. Autism is a spectrum, like many other mental conditions. Borderline is called borderline because it's somewhere between "excentric hysterical character" and "mentally ill". Hence "borderline", on the border. You get it.
Ergo: Chill. Everythings fine, and nobody is designating anybody on the spectrum as useless without true insight into their individual condition.
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In a medieval society they'd already be dead.
Or living in a monastery, in the best case.
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I have autism, it is who I am, it does not need to be 'cured'. I am different, but I am not ill.
So how often do you replace your computer monitor? My nextdoor neighbour goes through about 1 a year. Her actually autistic child threw the last one through a double glazed window last time causing damage in our yard and then spent 4 hours screaming until an ambulance arrived. Are you *that* different as well?
I suspect you're about as autistic as diet coke. Just enough of an autist to not understand the people around you and to be a whiny bitch, but not enough to actually have ever experienced what living w
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Just enough of an autist to not understand the people around you and to be a whiny bitch,
Perhaps you also are on the spectrum? That complete lack of empathy is pretty stunning.
Go be different online and read up on what real autism is.
More of that stunning empathy? Both are "real" autism.
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I can't exactly put my finger on why, but it just doesn't feel right when companies charge for medicine what the market will bear.
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Yes it cannot be denied that healthcare based on ability to pay is fundamentally amoral. A frequent retort by those that oppose single payor universal healthcare is that it would lead to rationing of healthcare. The comedy is that we're already rationing healthcare, it's just rationed based on how much you can pay. And we only have as many healthcare workers, facilities and services as the group of fortunates that can pay is able to support and they're concentrated in areas with the most able to pay.
Whil
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News flash: Most American people don't like the direction we're going when it comes to healthcare. The only people happy with it are those that exploit it to rake in piles of cash, and the government officials that get massive kickbacks for keeping the system running the way it is. Most of us want real change. Instead we get bullshit money grabs like the Affordable Care Act, which has priced out a large chunk of the middle class from even being able to afford the shit-show insurance we used to be able to
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I know this is a bit of a side-discussion, and you may have meant that as a throwaway remark, but I think that the reason that there isn't really a European
wrong delivery method (Score:2)
Between $10,000 and $15,000 per cord? (Score:3)
They should try it on themselves (Score:2)
Likely any deep scientific field or company is full of autistic people, likely the ones that are able to obsess for long enough to achieve results. No doubt also in their own organization.
Hopefully they won't hesitate to inject it into their own scientists first. Especially the autistic ones behind the research itself.
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Likely any deep scientific field or company is full of autistic people, likely the ones that are able to obsess for long enough to achieve results. No doubt also in their own organization.
Hopefully they won't hesitate to inject it into their own scientists first. Especially the autistic ones behind the research itself.
The autistic people you mention are high-functioning, while this whole enterprise is about milking parents of LOW-FUNCTIONING autistic kids. There is a difference between these groups, you know.
With all that said, it's sad that a respected research center like Duke got involved in a scheme that to me personally at least, looks like snake oil peddling and shameless quackery. Money can corrupt everyone after all, I guess.
Unlikely (Score:2)
My bold prediction is that this will get shut down before they even open for business.
Time to draw a line (Score:2)
Before even one for-profit clinic opens, every taxpayer dollar that went into the development of the procedure should be recovered from these creeps in blood, at a penny a pint.
Alternative (Score:2)
So in other words: If you socialize your babies properly, they're a whole lot less likely to end up being unable to socially interact later.
Sort of like if you buy a puppy and don't socialize it around other dogs while it's growing up, it's going to be an unstable neuro
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So in other words: If you socialize your babies properly, they're a whole lot less likely to end up being unable to socially interact later. Sort of like if you buy a puppy and don't socialize it around other dogs while it's growing up, it's going to be an unstable neurotic wreck around them as an adult.
Taking this simplistic view of what is said in the article at face value, we should see a dramatic rise in autism diagnoses over the coming years due to a long period of COVID lockdown, where babies and toddlers were unable to attend playgroups and activities that would usually have been available to them, nor in some countries, even visit close relatives for an extended period of time.
Of course, that's not what the article said at all, but you should be able to prove your own hypothesis with actual dat
voodoo (Score:2)
As the parent of an autistic, this sounds like a load of rubbish to me. We'll see I guess, but right now I don't believe it.
Stamina therapy? (Score:4, Informative)
In Italy a similar treatment ended up with being declared as a fraud:
https://en.wikipedia.org/wiki/... [wikipedia.org]
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In Italy a similar treatment ended up with being declared as a fraud:
https://en.wikipedia.org/wiki/... [wikipedia.org]
However, that wiki article for the Stamina therapy used in Italy says: "It was found that the cell preparations did not contain any relevant quantities of mesenchymal stem cells". So the stamina therapy didn't actually contain what it was supposed to contain.
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In Italy a similar treatment ended up with being declared as a fraud:
https://en.wikipedia.org/wiki/... [wikipedia.org]
However, that wiki article for the Stamina therapy used in Italy says: "It was found that the cell preparations did not contain any relevant quantities of mesenchymal stem cells". So the stamina therapy didn't actually contain what it was supposed to contain.
I bet that it will end up the same way. The Stamina therapy also has been associated with the hospital of Brescia. The theorist was not, indeed, a doctor, but he graduated in journalism. So in the North Carolina case it is much different but...
Don't you think that they will take this umbilical cord not to cure people or do real research, but to sell it, a thing that cannot be done? In Italy umbilical cord is donated, not sold, voluntarily and only in certain hospitals.
So I think that they may end up in sell
I get it. Now get vaccinated (Score:2)
Captive audience (Score:2)
The sad part is that the parents of children with severe cases of autism will pay almost anything for even a shred of hope that it will improve their child's quality of life. They are desperate. That is why many fell for the line of hokum that vaccines were somehow to blame for the condition. So while I'm extremely empathetic to the parents who are left grasping at any shred of assistance, I find it contemptible that there are people out there that want to take advantage of that desperation for profit.
Does this mean ... (Score:2)
Gut Microbiome (Score:1)
There is much more to be understood, but it would seem that certain bacteria
"Controversial" is code (Score:2)
for "Total shit, but we want to appear 'fair and balanced and neutral' even when the case is clear-cut.".
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Is that the new way to write vaccine in the loonie circles?
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