6 ms·

> When Mei was 4, one of her kindergarten teachers pulled Linda aside: Mei didn’t draw or write as well as the other kids and her language skills weren’t develo

by wnevets 2mo ago

> When Mei was 4, one of her kindergarten teachers pulled Linda aside: Mei didn’t draw or write as well as the other kids and her language skills weren’t developing normally. Her mother might want to get her evaluated, the teacher said. In March 2023, Mei was diagnosed with global developmental delay, a broad label with many causes. Specialists explained that some of Mei’s behaviors—the funny sounds she liked to make, for instance—were associated with autism.

ToucanLoucan 2mo ago
It says so much about how our society treats the neurodivergent that it's considered a non-extreme opinion that a dead child is preferable to an autistic one.
- orangedog 2mo ago
  That's not what happened here. The team was too ambitious and not careful enough but they were not trying to kill the child. I just don't think there is any reason to put that additional context into what happened here.
  - ryandrake 2mo ago
    I think what OP was trying to ask was why would a parent be willing to put their child at lethal risk, using an experimental treatment, for a condition that itself is not lethal? I don't have a kid with autism or a learning disability so I don't know how I'd handle it, but if I did, I'd probably choose to live with it and help the child make the best of it. I would not be reaching for someone's research project.
    - sokoloff 2mo ago
      Parents put their children at lethal risk (albeit small) for non-lethal conditions all the time. Wisdom teeth removal under general anesthesia is around 1 in 100,000. It doesn’t sound so crazy if the risks were presented as “only 10x as risky as wisdom teeth extraction”.
      - XorNot 2mo ago
        I don't know where you're getting that number from. For all dental anesthesia the risk rate seems to be literally 1 in a million [1] and the various law firms which popped up during that search suggested better then 1 in 300,000 at least. Which also omits the base level mortality of dental complications wisdom teeth are likely to cause. [1] https://pmc.ncbi.nlm.nih.gov/articles/PMC5535496/ https://pmc.ncbi.nlm.nih.gov/articles/PMC5535496/
        sokoloff 2mo ago
        Table 1 in your link does not support 1 in a million for general anesthesia procedures, unless I’m badly misreading it. Nor does the discussion section nor overall summary figure, which is 3 in a million for all forms of anesthesia (local, sedation, and general), where you have to at least exclude local anesthesia (the most common type) as having a fundamentally lower risk of death than sedation or GA.
        XorNot 2mo ago
        You're right I misread it - the headline number is inline with the other quoted values of closer to 1 in 320,000 or so.
    - elzbardico 2mo ago
      People without extensive scientific training can be easily convinced by an un-ethical expert that the risks are negligible. That's why we need external controls, ethical commites and so on.
    - mparkms 2mo ago
      It does not sound like the possibility of death was properly conveyed to the parents. >But nowhere did the form explicitly indicate that any of this could end in death, nor did that come up during any conversations with Qiu or the other doctors, Jason and Linda say.
    - Mezzie 2mo ago
      In this case, you're probably right, but there are definitely spaces between 'live with it' and 'lethal'. I have multiple sclerosis and at the time of my diagnosis the best treatment available to me in terms of slowing the progression of MS had a risk of triggering a rare brain infection that would kill you. So it was a choice between treatments that didn't work as well but had lower risk and treatments with greater odds of being able to walk/work/not be in horrifying constant pain in 10 years but also a small chance of death. These decisions can end up being horribly complicated, and they are definitely revealing in terms of your values.
- elictronic 2mo ago
  Pretty sure the parents weren’t expecting a 50-50 shot of cure vs death. The medical staff downplaying risk and ignoring issues seems like the bigger problem especially for a developmental procedure. If they represented the risk as 1 in 10000 I would probably take those odds. If the actual risk was 1 in 5 and they didn’t convey that it’s pretty messed up. Getting in your car has risk, so does riding a bike. They shouldn’t be coin flips.
- tliltocatl 2mo ago
  Neurodivergency, or whatever you might call it, sucks, at least during childhood. Ten times so in a family-centered society. I had a mild enough case to grow up functional and independent, but if not for that… I totally see how one might chose a risky treatment even when fully informed. The problem here, it looks like the consent was nowhere informed enough, and the research team chose not to publish the case after it turned out a failure.
- asa123 2mo ago
  This seems to be a rather extreme takeaway..?
- CuriouslyC 2mo ago
  You should try being the parent of a seriously autistic child. I'd put a large chunk of cash down that most parents of severely autistic children wish their child had never been born. There's no upside, it basically ruins your life. Every interaction is a reminder of what you will never have, and what you will have to suffer through for the rest of your life.
  - fwip 2mo ago
    If you really feel this way, get some therapy. The only one ruining your life is you.
    - numeri 2mo ago
      This is a terribly unempathetic response to someone opening up about a very taboo (but probably very common), painful emotion they've experienced.
    - CuriouslyC 2mo ago
      If you think I'm the one ruining my life, having to change diapers and do most everything for someone who can't talk, has limited motor skills so he has to be pushed around half the time rather than walk anywhere, who needs constant attention, and will probably need constant attention for the rest of his life, your "wokeness" has lead you to be incredibly cruel.
- Deukhoofd 2mo ago
  The article clearly points out that it wasn't autism for which Mei was treated, but Snijders Blok–Campeau syndrome, of which autism is just a single symptom. That goes way beyond neurodivergency.
- fwip 2mo ago
  I hear this meme sometimes, that anti-vaxxers and others "prefer a dead child to an autistic one," and I think it fundamentally doesn't represent their thought process at all. The far-more common sentiment that I see among anti-vaxxers is that the risk of death from childhood diseases like chicken pox are either zero or close-to-it, and that the risk of receiving autism from the vaccine is at least one-in-ten. These numbers aren't true, of course, but in their minds, they're weighing a negligible-chance of terrible outcome against a moderate chance of bad outcome. I'm sure there's a few extremists of course, who would say they prefer a dead child to an autistic one (same as how some parents feel about gay kids), but it does not represent most of the people in these movements.
- slashdave 2mo ago
  It was a genetic disorder. Stop with the silly labeling.
- outworlder 2mo ago
  > It says so much about how our society treats the neurodivergent that it's considered a non-extreme opinion that a dead child is preferable to an autistic one. They did not set out to kill the child. And the autism wasn't even the biggest issue. The issue is the developmental delays that were expected to compound the more the brain was left untreated.
- deleted 2mo ago
  [deleted]
- khazhoux 2mo ago
  What a terrible view of parents! I don't know a single one who wouldn't give their life for their child, whatever their flaws.
- deleted 2mo ago
  [deleted]

by wnevets 2mo ago

ToucanLoucan 2mo ago

It says so much about how our society treats the neurodivergent that it's considered a non-extreme opinion that a dead child is preferable to an autistic one.

orangedog 2mo ago
That's not what happened here. The team was too ambitious and not careful enough but they were not trying to kill the child. I just don't think there is any reason to put that additional context into what happened here.
- ryandrake 2mo ago
  I think what OP was trying to ask was why would a parent be willing to put their child at lethal risk, using an experimental treatment, for a condition that itself is not lethal? I don't have a kid with autism or a learning disability so I don't know how I'd handle it, but if I did, I'd probably choose to live with it and help the child make the best of it. I would not be reaching for someone's research project.
  - sokoloff 2mo ago
    Parents put their children at lethal risk (albeit small) for non-lethal conditions all the time. Wisdom teeth removal under general anesthesia is around 1 in 100,000. It doesn’t sound so crazy if the risks were presented as “only 10x as risky as wisdom teeth extraction”.
    - XorNot 2mo ago
      I don't know where you're getting that number from. For all dental anesthesia the risk rate seems to be literally 1 in a million [1] and the various law firms which popped up during that search suggested better then 1 in 300,000 at least. Which also omits the base level mortality of dental complications wisdom teeth are likely to cause. [1] https://pmc.ncbi.nlm.nih.gov/articles/PMC5535496/ https://pmc.ncbi.nlm.nih.gov/articles/PMC5535496/
      - sokoloff 2mo ago
        Table 1 in your link does not support 1 in a million for general anesthesia procedures, unless I’m badly misreading it. Nor does the discussion section nor overall summary figure, which is 3 in a million for all forms of anesthesia (local, sedation, and general), where you have to at least exclude local anesthesia (the most common type) as having a fundamentally lower risk of death than sedation or GA.
        XorNot 2mo ago
        You're right I misread it - the headline number is inline with the other quoted values of closer to 1 in 320,000 or so.
  - elzbardico 2mo ago
    People without extensive scientific training can be easily convinced by an un-ethical expert that the risks are negligible. That's why we need external controls, ethical commites and so on.
  - mparkms 2mo ago
    It does not sound like the possibility of death was properly conveyed to the parents. >But nowhere did the form explicitly indicate that any of this could end in death, nor did that come up during any conversations with Qiu or the other doctors, Jason and Linda say.
  - Mezzie 2mo ago
    In this case, you're probably right, but there are definitely spaces between 'live with it' and 'lethal'. I have multiple sclerosis and at the time of my diagnosis the best treatment available to me in terms of slowing the progression of MS had a risk of triggering a rare brain infection that would kill you. So it was a choice between treatments that didn't work as well but had lower risk and treatments with greater odds of being able to walk/work/not be in horrifying constant pain in 10 years but also a small chance of death. These decisions can end up being horribly complicated, and they are definitely revealing in terms of your values.
elictronic 2mo ago
Pretty sure the parents weren’t expecting a 50-50 shot of cure vs death. The medical staff downplaying risk and ignoring issues seems like the bigger problem especially for a developmental procedure. If they represented the risk as 1 in 10000 I would probably take those odds. If the actual risk was 1 in 5 and they didn’t convey that it’s pretty messed up. Getting in your car has risk, so does riding a bike. They shouldn’t be coin flips.
tliltocatl 2mo ago
Neurodivergency, or whatever you might call it, sucks, at least during childhood. Ten times so in a family-centered society. I had a mild enough case to grow up functional and independent, but if not for that… I totally see how one might chose a risky treatment even when fully informed. The problem here, it looks like the consent was nowhere informed enough, and the research team chose not to publish the case after it turned out a failure.
asa123 2mo ago
This seems to be a rather extreme takeaway..?
CuriouslyC 2mo ago
You should try being the parent of a seriously autistic child. I'd put a large chunk of cash down that most parents of severely autistic children wish their child had never been born. There's no upside, it basically ruins your life. Every interaction is a reminder of what you will never have, and what you will have to suffer through for the rest of your life.
- fwip 2mo ago
  If you really feel this way, get some therapy. The only one ruining your life is you.
  - numeri 2mo ago
    This is a terribly unempathetic response to someone opening up about a very taboo (but probably very common), painful emotion they've experienced.
  - CuriouslyC 2mo ago
    If you think I'm the one ruining my life, having to change diapers and do most everything for someone who can't talk, has limited motor skills so he has to be pushed around half the time rather than walk anywhere, who needs constant attention, and will probably need constant attention for the rest of his life, your "wokeness" has lead you to be incredibly cruel.
Deukhoofd 2mo ago
The article clearly points out that it wasn't autism for which Mei was treated, but Snijders Blok–Campeau syndrome, of which autism is just a single symptom. That goes way beyond neurodivergency.
fwip 2mo ago
I hear this meme sometimes, that anti-vaxxers and others "prefer a dead child to an autistic one," and I think it fundamentally doesn't represent their thought process at all. The far-more common sentiment that I see among anti-vaxxers is that the risk of death from childhood diseases like chicken pox are either zero or close-to-it, and that the risk of receiving autism from the vaccine is at least one-in-ten. These numbers aren't true, of course, but in their minds, they're weighing a negligible-chance of terrible outcome against a moderate chance of bad outcome. I'm sure there's a few extremists of course, who would say they prefer a dead child to an autistic one (same as how some parents feel about gay kids), but it does not represent most of the people in these movements.
slashdave 2mo ago
It was a genetic disorder. Stop with the silly labeling.
outworlder 2mo ago
> It says so much about how our society treats the neurodivergent that it's considered a non-extreme opinion that a dead child is preferable to an autistic one. They did not set out to kill the child. And the autism wasn't even the biggest issue. The issue is the developmental delays that were expected to compound the more the brain was left untreated.
deleted 2mo ago
[deleted]
khazhoux 2mo ago
What a terrible view of parents! I don't know a single one who wouldn't give their life for their child, whatever their flaws.
deleted 2mo ago
[deleted]