Autistic Appointee to US Govt Agency Does not support a Cure

[Darth Fanboy]

A parent's right to make decisions on behalf of their children is not unlimited.

Wow, I agree, it's almost as if I never said that.

My Other Half nearly lost his right leg because of one too many surgeries to fix his neurological problem - in his case, the problem being at the lower end of the spine rather than in the skull. He also suffers side effects from another surgery that was not in his best interests. Just because a cure exists does not mean a parent can or should make the decision for a child. I would hope that, if there are significant side effects, at least the initial children subjected to it will have their cases reviewed by an impartial ethics panel.

And yet, parents are put in the position from time to time to make medical decisions regarding the well being of their kids. Sometimes the doctors even present the options to the parents to let them make the decision! Boy wouldn't that create a quandary.

Nitram's perfectly understandable argument is that people who are afflicted by this condition such as himself do not want to become a completely changed person by any cure and I believe he has every right to make that decision for himself.

However, my inquiries were based on the facts that kids are already changing as people as they grow, children do not have the lifetimes of experiences that would cause them to look back on their memories as "alien", and that parents of autistic children who are put in the position of having to make this decision are going to be weighing the side effects versus a chance to legitimately improve their child's future prospects in life. I wanted to ask him how he would respond in that particular situation, and I feel he has answered my questions honestly and fairly openly, I thank him for that. Didn't need your completely irrelevant two cents for any of that now did I.

[Stark]

There's a low chance of a negative reaction or complication with most cures, therapies and vaccinations whether through side effect, allergy or toxic reaction, errors, etc. And yet, here we are.

[Alyrium Denryle]

There's a low chance of a negative reaction or complication with most cures, therapies and vaccinations whether through side effect, allergy or toxic reaction, errors, etc. And yet, here we are.

Most of those would not have to consist of radical brain-rewiring, the most comparable are organ transplants, and those have complications rather regularly.

[ChromodynamicGirl]

I'd downgrade from 'genius' to 'smart guy' in a heartbeat for better quality of life.

Well, as a person who's been diagnosed with Asperger's, sometimes considered a form of autism, I have to point out a simple philosophical point; that quality of life is a subjective property. Some of us who don't have normal social skills and some sorts of tendencies to allow us to lead a 'normal' life don't partly because we don't care about these things. To me, physics is far more interesting and important than people. 99% of the people I allow into my life are an accessory to my hyper-narrow interests. An absence is not a lack.

[JointStrikeFighter]

Radical brain rewiring in children doesn't matter because it will fucking happen as they grow up anyway.

[Knife]

I'd downgrade from 'genius' to 'smart guy' in a heartbeat for better quality of life.

Well, as a person who's been diagnosed with Asperger's, sometimes considered a form of autism, I have to point out a simple philosophical point; that quality of life is a subjective property. Some of us who don't have normal social skills and some sorts of tendencies to allow us to lead a 'normal' life don't partly because we don't care about these things. To me, physics is far more interesting and important than people. 99% of the people I allow into my life are an accessory to my hyper-narrow interests. An absence is not a lack.

This is the kicker that's been being beaten around this thread for pages now. You don't have good social skills, rather have your hyper narrow interests than new friends or cure, which is typical of the disease to be 'cured'; you are using a pshycosocial symptom of the disease as a shield as to why you don't want to cure the disease. Very fascinating.

It's a lot like those idiots who lose weight with diabetes and don't manage their insulin. Yeah, they lose weight but their glucose levels are through the roof. Their choice of course.

Edited typo.

[Serafina]

Radical brain rewiring in children doesn't matter because it will fucking happen as they grow up anyway.

Except that it happens over a duration of years, which gives the brain time to adapt.
We DO know what happens when such rewiring happens quickly (due to accidents and injuries), and it normally causes lasting damage even if the changes itself are not negative.

Which is my main objection for ANY cure of complex, brain related "diseases", such as autism: It's extremely unlikely that the brain will be able to cope with them, which will result in severe problems. It's one thing to enhance or inhibit a couple of neurotransmitters, but this issue is far more complex.
Talking about a cure that avoids these problems is just useless, since such a thing is most likely purely fictional. The human brain (and by extension personality) just isn't made for such massive, rapid changes.

[ChromodynamicGirl]

I'd downgrade from 'genius' to 'smart guy' in a heartbeat for better quality of life.

This is the kicker that's been being beaten around this thread for pages now. You don't have good social skills, rather have your hyper narrow interests than new friends or cure, which is typical of the disease to be 'cured'; you are using a pshycosocial symptom of the disease as a shield as to why you don't want to cure the disease. Very fascinating.

First of all the idea of a 'mental' disease that isn't unwanted by those who have it is epistemic nonsense. It's a genetic trait that makes people unique and, some would argue, better than your typical two-legged herd animal. I find your psychologizing to be pretentious and self-righteous; how typical of you normals.

[loomer]

They would argue wrongly, since a defining characteristic of a 'two-legged herd animal' is it's ability to blend easily with the herd. I'd also like to see someone argue that low-functioning autism or Aspergers is 'better' than the average quality of life. Remember, not everyone is goddamn high functioning.

[Lagmonster]

I've split the burgeoning thread-tangent over to SLAM, where it can be addressed separately.

[Akhlut]

While I agree that such a choice should be left to high- and moderate-functioning people with an AS disorder, I do think that low-functioning people with an AS disorder should be given such a hypothetical cure. My cousin's youngest son is extremely low-functioning (he is 8 years old and cannot speak, is still fascinated by infant toys, and wears diapers), and while he may be happy, he is never going to be independent or accomplish much in his life. I love him, but even a hypothetical metaphysical death that would accompany such a cure would be preferable, I imagine, to living a life wherein one is unable to communicate in any appreciable fashion or not soil one's self everyday. It's on the extreme end, but having seen his own anger and frustration at trying to communicate but being unable to makes me think that, in some instances at least, being unable to comprehend your earlier memories and experiencing such a severe personality shift would not always be the worst thing that can happen

[Broomstick]

Yes, which is why I would hope situations like that would go in front of some sort of review panel. Clearly, it must be considered on a case-by-case basis with regard to individual circumstances when the patient can not give consent to life-altering treatments that will have permanent and perhaps negative effects. Clearly, some people would benefit greatly. In other cases, the risk to benefit ratio may be quite different.

It may also be a situation where the sure is not instant - the brain rewiring might take time, or require additional supportive therapies/rehab to be fully effective, akin to re-attaching or transplanting a limb.

[Akhlut]

Yes, which is why I would hope situations like that would go in front of some sort of review panel. Clearly, it must be considered on a case-by-case basis with regard to individual circumstances.

It may also be a situation where the sure is not instant - the brain rewiring might take time, or require additional supportive therapies/rehab to be fully effective, akin to re-attaching or transplanting a limb.

Of course, I was mostly just making a statement with regards to the idea of one's memories becoming alien and the prospect of a "metaphysical death," as Aylrium put it; namely, that in some instances, it is an acceptable trade-off for people who otherwise wouldn't really live their own lives in their current state. And it might also be applicable to some moderate-functioning people, to a certain extent. However, I wonder if such memories would, in the case of high- and moderate-functioning people, actually be all that alien and if there actually would be a metaphysical death for such people. Although, I imagine it would be highly dependent upon the nature of the cure. However, I'd suspect there'd still be a strong continuity of consciousness and that, since you know how you once thought, such memories would be a little strange, but not necessarily alien.

[Broomstick]

Or perhaps alien but understandable, in the way we can look back at incorrect notions we believed in absolutely as small children.

If the cure takes time, perhaps years, then it might not seem a "death" but rather a more drastic than usual personality change. There is also the matter of fine tuning - an autistic with a hyperfocus in, say, mathematics may want to keep that, even if it means they still will not achieve perfect social skills. In other words, the higher functioning might be willing to make trade offs for improvements to subjectively optimize their situation rather than be "converted" to a completely normal human being. After all, normal is a range of a attributes, it, too, is a spectrum just as autism-asperger's is.

[Alyrium Denryle]

Radical brain rewiring in children doesn't matter because it will fucking happen as they grow up anyway.

I have already addressed that. Go back and read. The difference is one of magnitude and kind, and in this case the side effects can be massive and radically re-shape the personality of an existing person. A person growing and developing over a series of decades is a completely different process. You are building on a scaffold. In the case of a neurological cure for autism, you are re-shaping the scaffold.

While I agree that such a choice should be left to high- and moderate-functioning people with an AS disorder, I do think that low-functioning people with an AS disorder should be given such a hypothetical cure. My cousin's youngest son is extremely low-functioning (he is 8 years old and cannot speak, is still fascinated by infant toys, and wears diapers), and while he may be happy, he is never going to be independent or accomplish much in his life. I love him, but even a hypothetical metaphysical death that would accompany such a cure would be preferable, I imagine, to living a life wherein one is unable to communicate in any appreciable fashion or not soil one's self everyday. It's on the extreme end, but having seen his own anger and frustration at trying to communicate but being unable to makes me think that, in some instances at least, being unable to comprehend your earlier memories and experiencing such a severe personality shift would not always be the worst thing that can happen

Agreed. Autism is a spectrum, and if a person is not functional in any meaningful way, and cannot be happy as a fully cognizant person, that would be preferable. High and moderate functioning though can be perfectly content with their lives, function in society with workarounds. There is no reason to risk the massive side effects of neuro-rewiring.

[Stark]

Most of those would not have to consist of radical brain-rewiring, the most comparable are organ transplants, and those have complications rather regularly.

Since symptoms can be effectively treated with simple drugs, can you prove any putative 'cure' would require radical brain rewiring? Please note nobody anywhere has defined a 'cure'. 'Radical brain rewiring' is unlikely to even work.

Quitting smoking or heroin requires pretty radical brain rewiring too. I guess the two weeks of withdrawl constitute replacing the addict with a doppleganger?

[Alyrium Denryle]

Most of those would not have to consist of radical brain-rewiring, the most comparable are organ transplants, and those have complications rather regularly.

Since symptoms can be effectively treated with simple drugs, can you prove any putative 'cure' would require radical brain rewiring? Please note nobody anywhere has defined a 'cure'. 'Radical brain rewiring' is unlikely to even work.

Quitting smoking or heroin requires pretty radical brain rewiring too. I guess the two weeks of withdrawl constitute replacing the addict with a doppleganger?

Yes moron. The symptoms such as anxiety and depression are neurotransmitter issues. Mood regulation etc. The underlying problem that causes those as an outgrowth are issues with the neural pathways (the physical nervous system connections) that process things like speech, face and name recognition etc. I have posted links on this earlier in the thread and I wont repeat myself. In order to treat the underlying condition, the brain would need to be re-wired neuron by neuron because there are physical abnormalities in the brain.

Drug addicts suffer from withdrawl because of the regulatory pathways for the neurotransmitter the drug in question antogonizes, mimics, or facilitates. You go through cocaine withdrawl because cocaine inhibits the re-uptake of dopamine, and the over-abundance triggers the pathway that down-regulates the production of dopamine in your neurons. As a result when you go off of it, your nervous system has not been making enough of it to supply your needs and you experience withdrawl. All you do when you go off cocaine and go though the withdrawl symptoms over a period of weeks is reset the negative feedback loop to its default condition.

[Knife]

First of all the idea of a 'mental' disease that isn't unwanted by those who have it is epistemic nonsense. It's a genetic trait that makes people unique and, some would argue, better than your typical two-legged herd animal. I find your psychologizing to be pretentious and self-righteous; how typical of you normals.

Lol, psychologizing to be pretentious and self-righteous? I'm discussing the issues according to biology, physiology, pathophysiology, and psychology. Your indignant response actually shows more of your bias than anything I might be showing. And again, you're using your disorder to shield you from not only this hypothetical 'cure' but also you are now trying to use it as a shield against an opinion you don't hold.

Fat people do that too with their eating habits, it's there choice, of course, but they usually get a lot of grief for it both in real life and on this board. If you think your disorder makes you special and you don't want to be 'normal', good for you kiddo, don't take a cure. The rest of us will just shake our head and think you're a silly fool, which is, of course, your choice.

[Stark]

Yes moron. The symptoms such as anxiety and depression are neurotransmitter issues. Mood regulation etc. The underlying problem that causes those as an outgrowth are issues with the neural pathways (the physical nervous system connections) that process things like speech, face and name recognition etc. I have posted links on this earlier in the thread and I wont repeat myself. In order to treat the underlying condition, the brain would need to be re-wired neuron by neuron because there are physical abnormalities in the brain.

Except, it's treated all the time without doing that. I'm not sure how the specifics are even relevant, since people are talking about whether 'curing' autism is inherently good or bad, and not silliness like 'if 1 in 20000 people get a negative side effect it sucks'. Amusingly, not all autistic people have the symptoms you describe, and most higher-functioning individuals have no trouble speaking or recognising people.

Drug addicts suffer from withdrawl because of the regulatory pathways for the neurotransmitter the drug in question antogonizes, mimics, or facilitates. You go through cocaine withdrawl because cocaine inhibits the re-uptake of dopamine, and the over-abundance triggers the pathway that down-regulates the production of dopamine in your neurons. As a result when you go off of it, your nervous system has not been making enough of it to supply your needs and you experience withdrawl. All you do when you go off cocaine and go though the withdrawl symptoms over a period of weeks is reset the negative feedback loop to its default condition.

Wait, so when you're addicted to something and your brain needs it, getting over it is fine. When your brain chemistry is wrong, adjusting it is a complete brain rewire that kills you and replaces you with a doppleganger. Are you just saying that any change to a 'default condition' is fine? Since autism can be developmental - with symptoms worsening around puberty - surely 'curing' it is simply restoring a default condition and thus acceptable? Indeed, since people like myself and Nitram can function normally some proportion of the time and experience symptoms during periods of stress, surely that stress is simply 'abnormal'?

[Broomstick]

Yes moron. The symptoms such as anxiety and depression are neurotransmitter issues. Mood regulation etc. The underlying problem that causes those as an outgrowth are issues with the neural pathways (the physical nervous system connections) that process things like speech, face and name recognition etc. I have posted links on this earlier in the thread and I wont repeat myself. In order to treat the underlying condition, the brain would need to be re-wired neuron by neuron because there are physical abnormalities in the brain.

Except, it's treated all the time without doing that. I'm not sure how the specifics are even relevant, since people are talking about whether 'curing' autism is inherently good or bad, and not silliness like 'if 1 in 20000 people get a negative side effect it sucks'.

Sure, just ignore that our current mood-changers can have effects as diverse as totally killing a person's sex drive or prompting suicide. True, most do not have side effects that extreme, but they do occur. Negative side effects are real, and must be considered.

[Stark]

Luckily, I already mentioned that. It's also irrelevant, since the point is that removing the symptoms does not necessarily involve completely rewiring the brain. Indeed, I'd like to see some evidence that it does before anyone repeats it further.

And frankly in my experience everyone on SSRIs have some degree of side effects, especially those on higher dosages. They are fucked up bad stuff, but they're less terrible than ritalin was.

[Knife]

Luckily, I already mentioned that. It's also irrelevant, since the point is that removing the symptoms does not necessarily involve completely rewiring the brain. Indeed, I'd like to see some evidence that it does before anyone repeats it further.

And frankly in my experience everyone on SSRIs have some degree of side effects, especially those on higher dosages. They are fucked up bad stuff, but they're less terrible than ritalin was.

To be specific, the problem with most side effects are that the drug is not selective enough, even though SSRI's are selective unlike TCA's and MAOI's (the other anti depressents) but that only reallly means it eliminated the sedation you got from the TCA's and MAOI's.

[Uraniun235]

It seems like most of the arguments in the thread have circled around a cure that would be applicable to already-developed people, but what if the "cure" was some sort of genetic detection and therapy within the womb? Would that also be unacceptable to the resident autists? It's not like any personality would be developed by then.

[Saxtonite]

It seems like most of the arguments in the thread have circled around a cure that would be applicable to already-developed people, but what if the "cure" was some sort of genetic detection and therapy within the womb?

Some of the neurodiversity movement would consider that to be targeted/intentional destruction of a nation.

[loomer]

Which would be goddamn retarded. Autism is not an ethnicity or race, it's a fucking defect, just like deafness or blindness. Anyone who actually puts stock in that kind of shit - the whole "Autistic culture rar rar rar' thing - is absolutely full of shit. There is no actual autistic nation. There is no self-sustaining autistic race, so there is nothing to destroy.