This is seriously sickening and something has to be done about this. Giving something that is industrial bleach to autistic children! These folks claim that it will cure autism. Not only are they ripping parents off, but these kids could die from this stuff. This is going too far. There is no way this is acceptable. Is autism so horrible that you have to bleach it out of them?
Posted by Foust (Member # 3043) on :
My goodness, that is terrible. What do you expect from quacks, though?
Posted by Jeff C. (Member # 12496) on :
Well, I mean, you know...if they're dirty...
Kidding!
Posted by Rakeesh (Member # 2001) on :
I suspect something probably is being done about it, when the authorities become aware it's being done. Applying industrial bleach in pretty much any way to a child would be a bit of a red flag.
Posted by MattP (Member # 10495) on :
I dunno. I've been reading about this for years. One of the blogs linked is from 2010. As long as crazy people think it might help their sick kids, someone is going to keep trying it and suggesting that others do the same.
Posted by Rakeesh (Member # 2001) on :
Oh, well sure. Desperate parents and relatives preyed upon by unscrupulous con artists won't ever be stopped but that's not quite the same thing as nothing being done about it.
Posted by Samprimary (Member # 8561) on :
Yeah the Miracle Bleach Solution is pretty goddamned horriblarious. That's my fun word for something which is horrible but surreal enough to inspire nervous, pained laughter and the insanity of it all.
The "testimonials" are just like
quote:My 14YO son has autism. I’ve been treating him with a parasite cleanse system for 1.5 years (5 days on, 2 days off). He’s made some remarkable improvements, but every time I try to wean him off the cleanse, the parasite symptoms flare up. He is nonverbal and fairly low-functioning, so I don’t get any feedback from him as to how he is feeling. Last week, I started him on 1 drop of MMS then upped the dose to 1 drop, 2x a day this week. After about 4 days at 2 drops/day, he vomited once and had diarrhea all day. I am assuming it is the MMS. I decided to drop down to 1 drop/day again until he gets beyond this. He tends to have loose stools anyway, which I am guessing is related to this ongoing battle with the parasites. His gut tends to be very sensitive to anything I give him, so I have to go very carefully with anything new like the MMS. I am still giving him the other parasite cleanse (Systemic Formulas VRM 1-4). I would love to hear anyone’s ideas or insight into this. I am working with a homeopath who has done extensive research into parasite cleanses, but she has not researched MMS. I’m looking to get my son beyond these parasites once and for all. My homeopath and her colleagues are autism experts and do consults with parents from around the world. They have found that the children with autism who are considered “tough nuts” tend to also be parasite kids. With their compromised immune systems, it is difficult to eradicate parasites.
YOU SEE, THE SYMPTOMS ARE YOUR IMMUNE SYSTEM WAKING UP THAT JUST MEANS ITS WORKING
Posted by MattP (Member # 10495) on :
Speaking of the horriblariousness, someone noted on one of the blogs that it's very possible that the chems they are "treating" their kids with are contaminated with mercury.
Posted by CT (Member # 8342) on :
Bleach is (rarely, but appropriately) used diluted in bath water to help clear certain skin bacteria with infected eczema. Don't do this unless under the supervision of a professional.
That is different from taking it orally, though. I hope someone is involved who will protect these children.
Posted by Samprimary (Member # 8561) on :
Merely taking a bath in it and not feeding bleach to your children and giving them bleach enemas is in fact quite different, and won't cure the autism parasites. it is the SECRET health fix that doctors don't want you to know about! Posted by Kwea (Member # 2199) on :
I feel sick and angry all at the same time.
Posted by The Rabbit (Member # 671) on :
I agree with everything everyone has said in this thread but when I saw "curing" in quotes in the title, it reminded me of the people who insist that Autism isn't a disability or disorder that should be treated or cured. I strongly disagree, particularly if we are talking about the more severe forms of the disorder.
Treating kids by administering bleach internally is wrong for a dozen reasons that have nothing to do with how bad Autism is. It would be just as wrong if people were doing it to treat cancer or polio, maybe even worse because treating a kid with cancer with bleach most likely means forgoing a proven treatment that is much more likely to actually help.
The fact that some quacks are trying to poison autistic children in the name of "curing autism", should not be seen as evidence that all efforts to treat or cure autism are equally misguided.
Scientific research to better understand, treat and possibly cure people who suffer from autism should not be disparaged in any way because of the misguided actions of these quacks.
Posted by The Rabbit (Member # 671) on :
quote:Originally posted by CT: Bleach is (rarely, but appropriately) used diluted in bath water to help clear certain skin bacteria with infected eczema. Don't do this unless under the supervision of a professional.
That is different from taking it orally, though. I hope someone is involved who will protect these children.
Wouldn't it be considered child abuse if you made your kid drink shampoo? How is this any different?
Posted by Samprimary (Member # 8561) on :
See it's not child abuse this time around because something blah blah blah naturopathy homeopathy blah blah alternate medicine blah blah fascist state can't make starchild go through chemo for hodkins lymphoma when this mexican doctor says that the medical establishment is hiding that cancer is cured with vitamin c and herbs blah blah how dare you impose your views upon our family something something religious or cultural protections because we ~really believe~ blah blah addendum blah
Posted by The Rabbit (Member # 671) on :
Samp Rimary, Where do you draw the line? Should parents of a seriously ill child have no say in the treatment? Should they be limited to the FDA approved options? Does it matter how reliable the mainstream treatment is? What if there isn't any established treatment for the condition? Should parents be allowed to enroll their kid in an experimental treatment? Does it matter whether the experiment has been government approved. To the best of my knowledge, there is no proven effective medical treatment for Autism. Would you blame a parent who tried a fad diet or some mixture of probiotics to see if they help?
Maybe you see an obvious place to draw the line, I don't, but I'm quite confident that forcing your child to drink bleach, a known poison, is no where close to that line.
Posted by Samprimary (Member # 8561) on :
I don't see an obvious place to draw the line either, it's just that a lot of what would nominally just be considered child abuse if it wasn't practiced specifically under the auspices of being 'alternate' or 'new age' medicine (and sometimes still is judged abuse when CPS gets off its ass) gets a sort of a free pass for being a spiritual/alternative practice that should be respected, and I think this is a bubble of specific protective coverage that should be hemmed back into the normal field of what is considered abuse. In other words, if doing X to a child is considered abuse in other circumstances, no specific allowance is given for it not being abuse just because it is being done as a sort of alternate/spiritualist medicine practice. No special privileges to be a negligent dip of a parent just because you are part of the Christian Scientists, or His Holiness Brahma-Lama Lars Hippie Naropa III's special new-age star-LSD new age cult that treats cancer with crushed leaf petals.
To note, Starchild is kind of a specific example. His parents got him invested with the Hoxsey herbal cancer 'cure' and I'm sure pictures of him today (assuming he survived the otherwise readily treatable cancer) would show him with a scarred face from useless herbal topical pastes.
Posted by The Rabbit (Member # 671) on :
I hate to say it, but the basic idea behind this treatment isn't as totally crazy as it sounds. There is a growing body of scientific evidence that gut microflora play an important role in autism spectrum disorders. Fecal transplants are being studied as a treatment for a number of digestive disorders and there are responsible scientists and medical professional who think it might prove to be an effective treatment for autism.
It's also potentially really dangerous. It should be on near the top of everyone's "don't try this at home" list, right under open heart surgery and kidney transplants.
Posted by Samprimary (Member # 8561) on :
quote:I hate to say it, but the basic idea behind this treatment isn't as totally crazy as it sounds.
Really, because it sounds like 'feeding children bleach in a completely unproven alternative health regimen with no documented scientific basis for benefit, to try to cure their neurological state'
Posted by The Rabbit (Member # 671) on :
quote:Originally posted by Samprimary:
quote:I hate to say it, but the basic idea behind this treatment isn't as totally crazy as it sounds.
Really, because it sounds like 'feeding children bleach in a completely unproven alternative health regimen with no documented scientific basis for benefit, to try to cure their neurological state'
What these people are doing is crazy, but there is some documented scientific basis for benefit, believe it or not. Go check pubmed for recent research on gut micro-flora and autism. You can also do a search for "fecal transplant".
For a "fecal transplants" or "fecal bacteriotherapy", they treat you with potent antimicrobials to kill off all the bacteria in your gut and then inject you with fecal material from a healthy donor. Reputable doctors in top US hospitals are really and truly injecting people with someone else's poop. Believe it or not, this is not whacked out alternative medicine. There is a sound scientific basis behind it. It's getting published in major scientific journals and is about to go mainstream in the US for treating things like C. diff and IBD.
I must emphasize that no reputable studies have been done on using fecal transplants for treating autism. There are studies which have identified abnormalities in gut microflora that could cause some types of autism. There are responsible scientists and medical professionals who are talking about the possibility that in the future when it is better understood, fecal transplants might be an effective treatment for some types of autism.
Don't get me wrong. Anyone recommending that autistic kids can be cured by drinking bleach is crazy and dangerous. And any parent trying this at home is abusing their child.
Posted by Belle (Member # 2314) on :
Rabbit, that is well and truly fascinating.
Thanks for sharing. <---said in a sincere, not at all sarcastic tone Posted by Samprimary (Member # 8561) on :
yeah, no! I am only talking about the bleach thing. I know that there are other things being investigated to replace fecal flora and see if that has a positive change in neural development, but to compare that to the bleach thing, it's like hearing that they use radiation therapy to treat some things and then putting your kid in a microwave for ten seconds because it's kind of the same thing right
Posted by Jeff C. (Member # 12496) on :
quote:Originally posted by The Rabbit:
quote:Originally posted by CT: Bleach is (rarely, but appropriately) used diluted in bath water to help clear certain skin bacteria with infected eczema. Don't do this unless under the supervision of a professional.
That is different from taking it orally, though. I hope someone is involved who will protect these children.
Wouldn't it be considered child abuse if you made your kid drink shampoo? How is this any different?
Is it child abuse when you wash your kid's mouth out with soap?
My parents did it Posted by The Rabbit (Member # 671) on :
quote:Originally posted by Samprimary: yeah, no! I am only talking about the bleach thing. I know that there are other things being investigated to replace fecal flora and see if that has a positive change in neural development, but to compare that to the bleach thing, it's like hearing that they use radiation therapy to treat some things and then putting your kid in a microwave for ten seconds because it's kind of the same thing right
You'll get no argument on that from me.
I never said the bleach thing wasn't totally crazy. In fact, I kept repeating that it was absolutely crazy. What I said was that the underlying premise behind the bleach thing isn't as crazy at it might sound.
On the face of it, the idea that you could cure a disease by giving the patient a potent poison and then injecting them with someone else's poop sounds about as crazy as it gets.
But there is some sound scientific reasoning behind it and the preliminary experiments indicate its going to work for at least some diseases.
Posted by The Rabbit (Member # 671) on :
quote:Originally posted by Jeff C.:
quote:Originally posted by The Rabbit:
quote:Originally posted by CT: Bleach is (rarely, but appropriately) used diluted in bath water to help clear certain skin bacteria with infected eczema. Don't do this unless under the supervision of a professional.
That is different from taking it orally, though. I hope someone is involved who will protect these children.
Wouldn't it be considered child abuse if you made your kid drink shampoo? How is this any different?
Is it child abuse when you wash your kid's mouth out with soap?
My parents did it
That depends on what kind of soap they used and how much you end up ingesting. If we are talking about just enough to taste, I don't think its abuse. If they made you eat the whole bar, that would be abuse.
Posted by Synesthesia (Member # 4774) on :
I'm sorry, but I do not buy the whole brain gut autism theory. Wakefield proposed something like that and he's been debunked. I'm not saying don't treat autism with treatments that are shown to work, but many autistic people, even so-called low functioning people don't WANT to be cured. I sure as hell don't. The sensory issues suck, but on the other hand, I like how my brain works. I think there needs to be more understanding of autistic people instead of forcing cures down our throat. Why not try to understand how autistic people think? Autism could be a part of the human spectrum and worth understanding instead of wiping out. Even low functioning people can be intelligent despite not being able to speak. Besides stuff like this, the pure inaccuracies spouted about autism are enough to make me crazy. Like autistic people not having empathy? Not true. There's a theory going around about autism being more like intense world syndrome. It does fit with my experiences...
Posted by Kwea (Member # 2199) on :
I have a cousin with Autism, and he is fairly high functioning.....but he will have to be in a special home from the rest of his life. He is in a group home with a roommate, and there are 4 rooms to a councilor. He gets occupational therapy 3 times a week, and he manages all his own finances, but help is always available.
It depends on the person, Syn, and their symptoms. I don't agree that it isn't something to be cured. I'd help Tony find a cure in a heartbeat if one was possible.
Posted by aspectre (Member # 2222) on :
Radically changing intestinal microflora definitely fits under "don't try this at home." The first stage involves taking dangerously high levels and mixtures of antibiotics under very close monitoring. And the second involves fecal matter transplants to fairly specific points deep within the intestines under very close monitoring. THEN very close medical monitoring until the patient is deemed healthy.
Posted by aspectre (Member # 2222) on :
[ June 01, 2012, 07:16 AM: Message edited by: aspectre ]
Posted by Synesthesia (Member # 4774) on :
The thing is, you got to wonder what the autistic individual wants. Does Tony WANT to be cured? Life with autism isn't easy, but people tend to focus more on the it's so tragic aspects more than the whole picture. And the leave people with autism out of the dialogue altogether. In my case, as difficult as my sensory issues are, I am not sure that microflora thing is worth it. No, definitely not. Ew. Autistic people's brains work in unusual and interesting ways. I wish there were more focus on that, and less on trying to wipe us out.
Posted by CT (Member # 8342) on :
quote:Originally posted by The Rabbit:
quote:Originally posted by CT: Bleach is (rarely, but appropriately) used diluted in bath water to help clear certain skin bacteria with infected eczema. Don't do this unless under the supervision of a professional.
That is different from taking it orally, though. I hope someone is involved who will protect these children.
Wouldn't it be considered child abuse if you made your kid drink shampoo? How is this any different?
I am puzzled as to why you directed this at me, The Rabbit. I am not promoting giving bleach orally to children. I am criticizing it.
[I read someone above as suggesting] that using bleach in any form on children was inappropriate. It isn't -- as this is standard medical practice with certain limited dermatologic concerns -- but even in that limited case of exception, the circumstances in no way justified this. Which was what I said.
Was this unclear? I did not mean it to be. I do not want to be misread in this.
[ June 01, 2012, 09:04 AM: Message edited by: CT ]
Posted by mr_porteiro_head (Member # 4644) on :
You were not unclear.
Posted by CT (Member # 8342) on :
I am heartened. Posted by The Rabbit (Member # 671) on :
CT, You were not unclear and I didn't intend to direct my remark to you. I quoted you because I thought my observation followed out of what you said. It was an intended to be read as a rhetorical question to emphasize that lot's of common stuff that is just fine to use externally would be dangerous to take internally.
Sorry about the confusion. You were perfectly clear but I was not.
Posted by CT (Member # 8342) on :
I am further heartened.
I had the soul-rending experience of seeing myself as The One Who Wants You to Serve Bleach for Dinner.
Ayyyrrraargh. Eeep.
Posted by Jake (Member # 206) on :
quote:Originally posted by CT: I am further heartened.
I had the soul-rending experience of seeing myself as The One Who Wants You to Serve Bleach for Dinner.
Crap! :: changes CT's title on sake from "The One Who Wants You to Serve Bleach for Dinner" back to "Resident" ::
Posted by zgator (Member # 3833) on :
aspectre that was a beautiful video. Thanks for posting that.
Posted by CT (Member # 8342) on :
Jake: Posted by mr_porteiro_head (Member # 4644) on :
quote:The thing is, you got to wonder what the autistic individual wants. Does Tony WANT to be cured? Life with autism isn't easy, but people tend to focus more on the it's so tragic aspects more than the whole picture. And the leave people with autism out of the dialogue altogether.
To be fair, including them in the dialog is pretty tough to do with people who are incapable of dialog.
[ June 01, 2012, 11:48 AM: Message edited by: mr_porteiro_head ]
Posted by The Rabbit (Member # 671) on :
quote:I'm not saying don't treat autism with treatments that are shown to work, but many autistic people, even so-called low functioning people don't WANT to be cured. I sure as hell don't. The sensory issues suck, but on the other hand, I like how my brain works. I think there needs to be more understanding of autistic people instead of forcing cures down our throat.
Its fantastic whenever people are able to learn to like themselves and the idiosyncrasies that are part of who they are, but if you've suffered from autism -- how can you know whether or not you want to be cured? How can you know whether or not you'd like the way your brain worked better or worse if you were "cured" until you've tried it?
People with disabilities, particular those who been disabled since early childhood, very commonly underestimate the severity of their disability because they have nothing to compare to. If you've never been able to hear, you have no idea what you are missing. Even if you are able to function extremely well, you really have no idea how much easier it would be if you could hear what other people hear.
People with disabilities, particularly people with cognitive disabilities, often just aren't in a good position to make reasonable choices about the disability. People with serious debilitating mental illnesses often don't want to be treated when they are having a manic episode, but see things differently once the disease is under control. Drug addicts and alcoholics often don't want to be cured or treated either. Should we just shrug our shoulder and say that as long as they like the way their brains work we should just try to be understanding? Do you think would be wrong for the family and friends of an alcoholic to pressure them to receive treatment? Do you think it would be wrong to try to force someone who was having a psychotic break into treatment?
In our society, adults have the right to refuse medical treatment even if they are mentally ill or alcoholics (with in certain bounds), I see no reason that a high functioning person with autism should be treated differently. But having the legal right to refuse and expecting others to respect that choice are not the same thing.
There is no way that reasoning should be extended to children and mentally incompetent adults with autism. Parents have the right to physically force a child to take medicine. On more than one occasion, I've watched parents pin a young child to the ground and hold their mouths shut until they swallowed when they wouldn't take a needed medication. Why should a kid with autism have more right to choose their medical treatment than a kid with an ear ache? Parents and society have an obligation to care for people who aren't mentally mature and competent enough to decide for themselves.
I don't mean to insult you by the comparing autistic people the mentally ill, drug addicts and two year olds. I was picking extreme examples to make a point that people aren't always in a position to judge what's best for them. You are absolutely right that people should try harder to understand and accept people with autism. Right now, the only other option is to ostracize them or isolate them because there isn't an effective treatment.
But answer me this, if there were a completely reversible treatment for autism that would let you experience what it would be like to be "cured", wouldn't you want to try it? If you knew you had the choice to go back to exactly how you are now, why wouldn't you want to try it?
If there were a completely reversible treatment with no lasting effects that would allow me to experience what it was like to have autism, I'd certainly give it a whirl. Even though I confident I wouldn't want to be that way permanently, giving it a try would help me understand those who suffer from the disease and give me a new perspective on the world and people.
[ June 04, 2012, 01:33 PM: Message edited by: The Rabbit ]
Posted by Samprimary (Member # 8561) on :
Coming to a medical journal near you: Dr. CT's Miracle Bleach Cure
Posted by Synesthesia (Member # 4774) on :
Dude. You're talking about people who are adults. Shouldn't they have some sort of control over their lives? No wonder I like neurodiversity so much. Hell no would I want a cure. The sensory issues are a pain, but the same thing that makes me cover my ears in pain from loud noises makes awesome music awesome. I suspect that that the autism and synesthesia I have are linked. Folks should borrow my brain for a while. You get to see music without doing drugs. It would be from hell to have a so-called cure forced on me. Or to have my autonomy taken away. I'm not saying don't help and treat people, but there's just this way autism is viewed by non-autistic people that is enough to drive me up a tree. If there's one thing useful about being verbal or being able to write is being able to write down your experiences. I suggest reading Amanda Bagg's perspective. She can't speak, but she writes about her experiences and feelings.
Posted by sndrake (Member # 4941) on :
quote: But answer me this, if there were a completely reversible treatment for autism that would let you experience what it would be like to be "cured", wouldn't you want to try it? If you knew you had the choice to go back to exactly how you are now, why wouldn't you want to try it?
If there were a completely reversible treatment with no lasting effects that would allow me to experience what it was like to have autism, I'd certainly give it a whirl. Even though I confident I wouldn't want to be that way permanently, giving it a try would help me understand those who suffer from the disease and give me a new perspective on the world and people.
(Crawling out of the woodwork...)
Just to put a proper perspective on how very very hypothetical the idea of a 'cure' is for any complex neurological difference after very early in the developmental period, here's something I wrote a few years ago about 'cures' from my personal perspective:
quote:The brain is an incredibly complex and interconnected system. Whatever thing or things develop differently in the brain of autistic persons don't operate in isolation. There's evidence in both autism and in brain injured people that the brain will reorganize itself and work in radically different ways than originally designed in its efforts to make up for the injury and/or divergent development.
What does this mean in terms of "cure"? To me, it means that if a single element or managable set of them can be isolated, a "cure" can only operate as such if it happens fairly early in the process.
I don't see any way - given the plasticity and compensatory mechanisms that have probably developed in the brain - that you can "flick a switch" and have a suddenly "normal" adult/adolescent/older child with autism.
So, for me, it's not a matter of being "anti-cure" as much as it is a matter of tilting against windmills. And I should explain that to me, there is nothing admirable about tilting against windmills. Don Quixote thought he was fighting giants, which would be admirable. There is no point in fighting windmills. Unlike many people, I see nothing romantic about the story - just a sad parable about wasting your energy on the wrong target.
Most of my neurological issues stem from an initial brain injury at birth and the development of hydrocephalus. My hydrocephalus was 'treated' (and an outlier in terms of the incredible longevity of my shunt) that kept things from getting worse. But I wasn't 'cured' or fixed in terms of the constellation of neuromotor and cognitive issues I have (and I do *not* suffer from them). Pieces can be treated. There are medications for tremor - side effects not worth it. Corrective lenses for doubled vision - of dubious value when it was suggested when I was *50*.
Migraines, though. I *suffer* from those. I'll be the 200th or so in line for the cure for that. (I want to wait to see what happens to the first couple hundred in case there might be some unpleasant 'side effects' no one suspected first.)
Posted by mr_porteiro_head (Member # 4644) on :
quote:But answer me this, if there were a completely reversible treatment for autism that would let you experience what it would be like to be "cured", wouldn't you want to try it? If you knew you had the choice to go back to exactly how you are now, why wouldn't you want to try it?
Hypothetical answer:
Because without my condition, I would I really be me? Under the affects of the temporary cure, would I be me, or somebody else? What if that other person chose to keep the cure? Would that be me making the choice, or would it be that other person murdering me?
Posted by The Rabbit (Member # 671) on :
quote:Dude. You're talking about people who are adults. Shouldn't they have some sort of control over their lives?
I answered that question. Yes, almost all adults, including those with high functioning autism, should be allowed to refuse medical treatment.
quote:Hell no would I want a cure. The sensory issues are a pain, but the same thing that makes me cover my ears in pain from loud noises makes awesome music awesome. I suspect that that the autism and synesthesia I have are linked. Folks should borrow my brain for a while. You get to see music without doing drugs.
I'm not sure if you are answering my question or not. It seems that you are saying that if there was a treatment that would allow you to experience not being autistic for even a short period of time you would absolutely refuse. Am I understanding you correctly?
You think folks would benefit from borrowing your brain and experiencing the world as you do but are strongly opposed to seeing the world the way they do -- even temporarily. Do I understand that correctly?
You think that if people could experience being autistic for a short time it would change their minds about autism being a disability. Why then do you completely reject the idea that being able to experience not being autistic might change your mind? Why do you think you are more capable of assessing the benefits of not being autistic without experiencing it than a typical person is able to appreciate the benefits of autism without experiencing it?
quote:Or to have my autonomy taken away
If you couldn't communicate what your wants and needs and you meet those needs without others help, which would be worse: losing your autonomy or being left to die on the street?
quote:I'm not saying don't help and treat people, but there's just this way autism is viewed by non-autistic people that is enough to drive me up a tree.
I'm not sure what exactly you see as the problem with the way autistic people are treated. I know there is an real problem with the way most people treat people with an obvious disability. Some of that is bigotry, some of its fear, some of its laziness, but I think an awful lot of it is just a natural discomfort with the unfamiliar. Most people simply haven't had enough experience with disabled people to know the socially correct way to act and that makes them nervous and uncomfortable.
I think all these tendencies are amplified when a person has a disability that manifests itself in behavior that is well outside the accepted social norms. I think that's part of our natural biological programming. Humans are social creatures and in order to live safely and harmoniously with other people we have to be able to predict what they are likely to do. We do most of this subconsciously. We assess a persons mood, whether they understood what we've said, whether they they are friendly, happy, excited, irritable, sexually attracted, honest or dangerous by reading their body language along with their verbal responses. Based on those largely subconscious assessments, we predict how people are likely to act when we ask a question, make a joke or offer advice or whether they will yield right of way to us at a stop sign. Clearly some people are lots better at this than others and there is a large range of what's "normal", but for most everyone, when a persons actions and reactions fall outside a certain range of what we expect, it triggers a natural warning system that makes us very uncomfortable or even afraid.
One of the key symptoms of many types of autism is an inability to understand or follow normal social conventions. It's just not reasonable to expect that people will be comfortable and at ease with that unless they know you well. You are asking people to overcome something that evolution has hard wired into us so we can live in social groups.
Posted by Dan_Frank (Member # 8488) on :
quote:Originally posted by mr_porteiro_head:
quote:But answer me this, if there were a completely reversible treatment for autism that would let you experience what it would be like to be "cured", wouldn't you want to try it? If you knew you had the choice to go back to exactly how you are now, why wouldn't you want to try it?
Hypothetical answer:
Because without my condition, I would I really be me? Under the affects of the temporary cure, would I be me, or somebody else? What if that other person chose to keep the cure? Would that be me making the choice, or would it be that other person murdering me?
Here's another hypothetical:
I want to devote my life to basket weaving, and spend most of my time pursuing this dream. I don't pay attention to much else, because I don't want to be distracted from my goal: learning better methods of weaving baskets.
One day, someone tells me all about the scientific method, cancer, and medical science's search for a cure. Until they told me this, I had no idea people spent time on these issues.
But now I'm consumed with interest. I abandon basket weaving and devote the rest of my life to learning science, and researching cancer.
Am I still me? Have I murdered my old basket weaving self?
What if instead of basketweaver-to-scientist the transformation was from atheist-to-Christian?
We're constantly exposed to new ideas and new information, including entirely new ways of thinking (like the scientific method, or a religion).
If we find one of these new ways of thinking preferable to our old way, so we adopt it and abandon the old one, does that mean we've murdered our old self?
It seems to me we've just changed, in a way that we think is for the better.
Posted by The Rabbit (Member # 671) on :
sndrake, I don't think I disagree with anything you said. For most of the people suffering from physical or mental disabilities, a real cure is simply not a realistic possibility, at least at this time. That means that as a society, we need to work on assisting people so they are limited as little as possible by their disabilities. We need to recognize that physical and mental limitations are real but often far less serious than people normally expect.
When we first meet someone with obvious impairment, most people tend to over estimate the persons limitations and then as we become familiar we tend to under estimate the need of assistance.
My sister-in-law was in a wheel chair for the last 10 years of her life. When she first had to start using it, she noticed people started ignoring her. They wouldn't look at her directly. When she'd ask a question, the person would answer to her companion instead of her and often talk about her in third person as though she was not there. She had to become assertive and insist that people not treat her as though she was stupid because she needed a wheel chair.
I have another good friend who is legally blind. He compensates so well that it's easy to forget that he struggles doing many things that most of us do easily like recognizing a friend he passes on the street, reading a posted notice or filling out a form.
Some people are able to overcome serious disabilities and even out perform many of us without those limitations. That does not mean the disability isn't real and that they would not benefit from treatment. The fact that some people succeed against the odds, does not mean the odds were never stacked against them.
It's never easy to find the proper balance between respect for a persons abilities and compassion for their limitations. That is doubly difficult when a person doesn't have the expected balance of abilities.
Posted by The Rabbit (Member # 671) on :
quote:If we find one of these new ways of thinking preferable to our old way, so we adopt it and abandon the old one, does that mean we've murdered our old self?
It seems to me we've just changed, in a way that we think is for the better.
You've made my point better than I could. Until we have experienced something, we can't know whether or not we would prefer it to what we have now. As human beings we are constantly growing and progressing. We are never exactly the same person today that we were yesterday. Every experience changes who we are in some way.
We can not know whether we really want something unless we can understand what the thing is and how it will change us. If we avoid experiencing new things because they might change who we are, then we must avoid living all together. If we choose to avoid things that are likely to change us, we eliminate any chance that we might become better than we now are.
Posted by Synesthesia (Member # 4774) on :
Maybe for a bit I'd want to think differently (I kind of don't like the use of the word "cured" because I'm not really totally sure there's something WRONG with me), but I like myself the way I am. I like the way I see the world and the way my senses collide together and how good that is when it comes to wonderful music.
I'm not sure if normal exists, but if it is, it doesn't sound very fun. If people can evolve to fear difference, can't they evolve to learn to accept it? You'd think we'd understand this by now anyway. Catch up! Hi, Sndrake!
Also, autistic people can have extreme empathy, but just not know how to express it in ways that are socially acceptable. Many folks with autism can learn social skills too, but sometimes i wonder if this concept of normal should be expanded just a bit...
Posted by Dan_Frank (Member # 8488) on :
quote:Originally posted by The Rabbit: You've made my point better than I could. Until we have experienced something, we can't know whether or not we would prefer it to what we have now. As human beings we are constantly growing and progressing. We are never exactly the same person today that we were yesterday. Every experience changes who we are in some way.
We can not know whether we really want something unless we can understand what the thing is and how it will change us. If we avoid experiencing new things because they might change who we are, then we must avoid living all together. If we choose to avoid things that are likely to change us, we eliminate any chance that we might become better than we now are.
I dunno, I think you did a fantastic job articulating it in this post. Especially the second paragraph. Posted by Synesthesia (Member # 4774) on :
But what if some things are a part of us and how we see the world? It's not a matter of not changing, to some it would be a matter of losing something that makes you... you.
Posted by The Rabbit (Member # 671) on :
quote:If people can evolve to fear difference, can't they evolve to learn to accept it? You'd think we'd understand this by now anyway.
Evolution doesn't work that way. Evolution isn't something we can change, its the result of environmental selective pressures. There is a survival advantage to being cautious about things that are strange and new. There is also a survival advantage to exploring the unknown. Millions of years of evolution has equipped us with a particular balance between those traits that has served most people well. If for some reason natural selective pressures change to favor people who are happy and comfortable with what is strange and unfamiliar social behavior, then in a few thousand generations most people won't be uncomfortable or afraid of people who behave outside the social norm.
Until that happens the reality is that people have to fight a natural hard wired fear in order to interact with autistic people. We are highly adaptable, with repeated exposure, what is strange and frightening can be come familiar and comfortable. People can learn to make a conscious decision to not to flee from what is strange and frightening, but that just isn't going to be easy. We can and certainly should encourage people to be more open and accepting to people who have autism and other neural disorders. But if you can't understand why that's going to be hard for most people, it shows a deficiency in your ability to understand and relate to what other people feel. That is by definition a lack of empathy.
Maybe my insistence that autism is a disability also shows a lack of empathy. I'm not particularly social adept. I'm bad at reading non-verbal communication and often find that people misinterpret my body language. I sometimes think I may suffer from a very mild for out autism myself. The thing is, I recognize that my lack of social skills is a limitation and something I'd like to improve. While it's important to like yourself, if you can't recognize your own weaknesses you can't improve. When think its self limiting and destructive when people start defending their weaknesses as something that's actually desirable.
Posted by mr_porteiro_head (Member # 4644) on :
You two are, IMO, grossly underplaying the effects of autism in one's life. It is simply not comparable to learning about a new endeavor you'd never heard of before.
Posted by mr_porteiro_head (Member # 4644) on :
quote:I sometimes think I may suffer from a very mild for out autism myself.
You're an engineer. I'd be surprised if you didn't have some traits like that.
Posted by Synesthesia (Member # 4774) on :
I don't know. I've struggled for years trying to get a job, trying to work my way up from depression and social anxiety and such. It hasn't been easy, but I've learned to accept myself the way I am for the most part... though there are some things I need to change such as my lack of organization and such.
Maybe I am down playing it too much, I don't know... I have trouble seeing the way my brain is wired as a total weakness, but I've improved over the ages in terms of social skills and such.
But, if people can't evolve to accept difference, don't we have the brains and intelligence to learn to accept difference? We really should be used to this by now. There's 1 in 88 autistic people, according to the latest reports. It's not going away anytime soon. Folks need to get USED to this, but they can't even get used to people having different skin colours and sexualities.
Posted by Dan_Frank (Member # 8488) on :
quote:Originally posted by mr_porteiro_head: You two are, IMO, grossly underplaying the effects of autism in one's life. It is simply not comparable to learning about a new endeavor you'd never heard of before.
For some people, religion becomes far and away the most important thing in their life. I mean, what if a missionary comes to your house and tells you about a religion and then you become a priest and devote your entire life to that religion? Have you murdered your old self?
Or if it's because autism is considered a medical disability, then we can go that route. I think Rabbit already did last page: What about a functionally deaf person who gets a cochlear implant and is able to hear? Is that sufficiently similar? And if so, did they murder their old self?
These all just seem like differences of scale to me. Quantitative differences, not qualitative. Ultimately they are all examples of you changing, in a way you think will be better. Which, to varying degrees, everyone does many times throughout their life.
To be clear, if someone thinks that being able to hear, or being a priest, or not being autistic, is not going to be an improvement, then I agree, they shouldn't do it. Certainly, it shouldn't be forced upon them.
And if someone is just uncertain as to whether it will be an improvement or not, and such a change is irreversible, I can totally understand fear in that case. If you were considering joining a priesthood that killed apostates, that would be a difficult decision to make.
But if the choice is reversible (as in Rabbit's hypothetical)... then I really don't see the problem. You're still you. If you are happier in your new state, then stay as is. If you aren't, then change your mind.
Posted by mr_porteiro_head (Member # 4644) on :
quote:For some people, religion becomes far and away the most important thing in their life. I mean, what if a missionary comes to your house and tells you about a religion and then you become a priest and devote your entire life to that religion? Have you murdered your old self?
Or if it's because autism is considered a medical disability, then we can go that route. I think Rabbit already did last page: What about a functionally deaf person who gets a cochlear implant and is able to hear? Is that sufficiently similar?
In my opinion, not even close.
quote:These all just seem like differences of scale to me. Quantitative differences, not qualitative.
I disagree.
Posted by sndrake (Member # 4941) on :
(Hi Syn!) Syn reminds me that I don't want people to get the idea that I believe neurodiversity is best described at pathology - I know my own peculiar neurology does have its root in pathology, but I mean that to apply to me and just me.
To Dan - one big problem I see with your analogy is the difference in process. We all change in ways as we learn and experience - and sometimes we decide some of the changes were a mistake and revert. In the talks about 'cure' - impacting the wiring of the brain, it's doubtful the changes would be reversible.
Rabbit - Personally, I don't think of myself as having 'overcome' anything (OK - there's two things in my life that might apply to, but only one is even remotely disability-related). Not only that, but I think that the weird balance of cognitive strengths gave me some unusual ways of looking at things - how language and terminology are used and abused within certain professional arenas. (I've got a good track record of annoying a lot of bioethicists by challenging them to give me one standard definition of some very widely-used terms - widely and carelessly used.)
I'm sure the pre-injury me was on track to have across-the-board cognitive strengths. I don't feel cheated. If I can ask questions that can frustrate and annoy some folks who need more of that treatment, I figure I'm doing OK. ;-)
Posted by Synesthesia (Member # 4774) on :
The problem is that changing the bad stuff would take away the good stuff too. It's not all doom, gloom and misery to me, but it could be different for another person. I'm ready to throw a tantrum after taking 50 calls a day and beyond drained from being touched on trains and the constant sound issues, but on the other side of the sword is the strong emotions and electric happiness despite the misery of the sensory issues and social exhaustion. You join a religion, and you're still yourself, someone takes away your brain chemistry, it's a different thing altogether.
Cochlear implants are a kind of controversial subject and reading both sides, I don't even know how to feel about it. They don't really help you to hear the way a person is born hearing can hear. And there's deaf culture to consider, but I don't even know about that. I just think, would I really be better if I were cured of my variations? What would that mean in the first place? Would I be more social? Less obsessed with music and spiders? Would I jump less from loud noises and not feel pain when I hear certain sounds? I think I'd like to tone down the sound and smell issues. You can't do a thing to block hateful smells, but I still want to keep aspects of how my brain is.
Posted by CT (Member # 8342) on :
Coming to a medical journal near you: Dr. CT's Miracle Bleach Cure
Oh. God.
I have asthma, man. You trying to kill me?
I laughed till I wheezed out a lung. Maybe two.
Posted by CT (Member # 8342) on :
I know! That is brilliant.
---
As to the other conversation, I am enjoying reading it very much.
Though I have nothing to add, I have much to take from it. Thanks, guys.
Posted by Destineer (Member # 821) on :
I'm not sure the difference between autistic and non-autistic people is well captured by an analogy about changing beliefs. For one thing, a major trait of autistic people has to do with skills--they're very limited in their ability to develop certain capabilities that other people have. Gullibility is a huge problem, for example. It's easy to con a lot of autistic people.
Posted by Synesthesia (Member # 4774) on :
Autism is a delay. It's not always total stagnation. Even folks who can't speak can learn and develop skills with patience and help.
And seriously read Amanda Bagg's Blog. her perspective is fascinating.
Posted by The Rabbit (Member # 671) on :
quote:Originally posted by mr_porteiro_head: You two are, IMO, grossly underplaying the effects of autism in one's life. It is simply not comparable to learning about a new endeavor you'd never heard of before.
I think you fundamentally misunderstand the argument. The issue is not whether or not the affects of autism are comparable to the effects of religion or learning about a new field or even whether trying to cure autism is any different than trying to convert someone to your religion.
The issue is whether or not a person with autism can know whether they prefer to be that way. Unless they have experienced life without autism, how could they possibly know that they would not prefer it. Unless they've experienced the alternatives, people can't accurately predict things as simple and trivial about themselves as whether or not they'd prefer chocolate ice cream to vanilla. Is there any reason to assume that people are better at understanding important and complex things about themselves without experiencing the alternatives than they are at understanding the simple and trivial?
I know that's not the way you are looking at the question. There are some parts of our personalities that we think are critical to our identity and some parts, like our taste in ice cream, that we see as unimportant. But in my experience, people really aren't very good at understanding their true essence. The things we think of as central to our identity frequently change as we move through life.
I believe that the essence of the "real me" is contained in my spirit and not my body. A disease or an accident or medical treatment that changes my brain can the ability of my body to express what is in my spirit, but it can't change who I really am. Diseases like Alzheimer's and Schizophrenia can rob a person of the ability to express and even understand who they really are, but they can't change the essence of a soul. I don't believe that people with autism have autistic spirits any more than I believe that people with schizophrenia have schizophrenic spirits or that amputees have amputated spirits.
Whether of not something is an undesirably disorder or part of a persons true essence is not determined by the age at which it manifests.
[ June 05, 2012, 12:20 AM: Message edited by: The Rabbit ]
Posted by The Rabbit (Member # 671) on :
quote:But, if people can't evolve to accept difference, don't we have the brains and intelligence to learn to accept difference? We really should be used to this by now. There's 1 in 88 autistic people, according to the latest reports. It's not going away anytime soon. Folks need to get USED to this, but they can't even get used to people having different skin colours and sexualities.
If I understand you correctly, you're saying that anyone who thinks autism is a disorder that should be fixed, is wrong. They are intolerant of neurological differences, disrespectful of who you really are and trying to restrict your autonomy.
But at the same time, you seem to be saying that if other peoples brains are wired so that they fear people who are different, like those with autism, there is a problem with their brains that needs to fixed.
Posted by Rakeesh (Member # 2001) on :
Frankly, I am [u]deeply[/I] skeptical anytime anyone says something like, "No way I'd want a cure," or, "If I were injured like that I'd kill themselves," things of that nature. It takes some pretty deep and clearly expressed thinking for me to read someone saying such things and not translate them to, "I hope I wouldn't want a cure/would kill myself."
It's just...man, this is some pretty heavy stuff here, Synesthesia. How can you possibly know you wouldn't want a 'cure', setting aside the imprecision of such things? You can't. You may hope you wouldn't want a cure that, while conferring major benefits also caused fundemental changes in your...intangibles, so to speak.
Ssndrake's reasoning, on the other hand, appears quite different. Don't tilt at windmills? Excellent advice! Relevant. Founded not just in the sentiment that says we mustn't say something which might be mean about an autistic person, but rather deals with the deeper and much more complicated questions of humanity, and how and when it exists and is changed.
But show me a person who knows they wouldn't take a magic pill that removed many of the things that make life more difficult, though not necessary less joyful, and I'll ask how they know that and be dubious of their answer unless a similar challenge in the past can be pointed to. But to point out that we oughtn't even consider such an impossible scenario, well hey, that's worth talking about!
Posted by mr_porteiro_head (Member # 4644) on :
quote:I think you fundamentally misunderstand the argument. The issue is not whether or not the effects of autism are comparable to the effects of religion or learning about a new field. The issue is whether or not a person with autism can know they prefer to be that way.
If you're not able to make your argument without saying that autism is like like learning something new, then your argument is a non-starter for a lot of people.
Look, I'm not trying to argue for what is or what is not. You said that you couldn't understand why anybody would decline to be normal to see what it's like. I'm merely providing a reason why they might not.
Whether it truly is or is not a fundamental part of who they are, a lot of people feel like it is, and it really shouldn't be all that hard to understand why they'd balk at losing that.
------
Let's suppose another autisism-like disorder. With this disorder, you'd have practically no reading nor mathematical skills. Intellectually and emotionally, you'd be quite dim, just barely on the cusp of being mentally competent. But you'd find much more contentment than you can currently imagine from simple activities like fingerpainting. You'd be, by any objective standard, happier.
If you could, would you choose to become like this permanently? I doubt you would. I know I wouldn't.
But let's suppose you had the opportunity to try it out temporarily. It might be very relaxing -- like an extreme form of turning off your brain and laying about or watching a summer blockbuster.
But imagine how much more hesitant you might be to try that it if there were a chance that dim, finger-painting you might decide that they preferred to stay that way, rendering the temporary change permanent.
Posted by Synesthesia (Member # 4774) on :
I don't think I said that fear of difference is so much a problem of the brain that needs to be fixed. People who fear differences or have prejudices can learn not to be that way, like learning not to fear snakes or spiders, which might be hard wired into the brain. But when you talk about curing autism that sounds less like learning to adapt to society and more like wiping out people who are different altogether because of course something must be wrong with these folks that are autistic. But I wonder if that's even an accurate way to look at things. Especially since people can view any variation of the norm as meaning something is wrong with the person who doesn't fit in. Sexuality comes to mind. Some people think if people are not heterosexual they need to be cured, but many that are gay think they are fine the way they are and it's society that needs to deal with it. I think I know myself well enough at this point to determine that no, I do not want a magic pill.
Also, do people even know what being normal means enough to determine that everyone wants to be that way?
[ June 05, 2012, 08:06 AM: Message edited by: Synesthesia ]
Posted by The Rabbit (Member # 671) on :
quote:f you're not able to make your argument without saying that autism is like like learning something new, then your argument is a non-starter for a lot of people.
I never said that autism was like learning something new. I said that unless you've experienced the alternatives, you can't know what you really prefer.
Do you see any particular reason that this is less likely to be true of autism than it is of anything else in life?
quote:But let's suppose you had the opportunity to try it out temporarily. It might be very relaxing -- like an extreme form of turning off your brain and laying about or watching a summer blockbuster.
But imagine how much more hesitant you might be to try that it if there were a chance that dim, finger-painting you might decide that they preferred to stay that way, rendering the temporary change permanent.
That second half pretty much negates the hypothetical situation I intended and the point I was making.
[ June 05, 2012, 09:11 AM: Message edited by: The Rabbit ]
Posted by scifibum (Member # 7625) on :
quote:I said that unless you've experienced the alternatives, you can't know what you really prefer.
Do you see any particular reason that this is less likely to be true of autism than it is of anything else in life?
Your assertions beg the question Porter is raising, though. Who is the 'you' experiencing alternatives, if each alternative is a significantly different 'you'? Can these different versions of yourself actually compare themselves to each other?
Since autism isn't just a simple impairment like vertigo, it might not be fair to say that an individual - a person with an identity - can experience both alternatives. The act of experiencing the alternative may alter the identity of the person experiencing it to the point that it's meaningless to say that the person who had autism is now experiencing the alternative. Even if this is reversible, somehow - which seems unlikely - how are we to know whether a memory of the non-autistic experience can even meaningfully be carried from the non-autistic state back to the autistic state, so that non-autistic version of the person can evaluate whether it was a net good from her own perspective?
I think this hypothetical carries with it the assumption that there is a sort of constant self that can experience both being autistic and non-autistic. If you buy mental dualism, then you might consider such a hypothetical naturally reasonable, but I think the science right now indicates the body and brain are all there are of the individual, so this somehow aloof self that can compare both alternatives is a problematic assumption.
Posted by Samprimary (Member # 8561) on :
Disadvantages of autism >>>>>>>>>>>>>>>>>> advantages of autism
even when 'high functioning' — most aspies just have this extremely low level of understanding as to the extent of what general functionality they don't have as individuals.
Posted by Destineer (Member # 821) on :
quote:Originally posted by Rakeesh: Ssndrake's reasoning, on the other hand, appears quite different. Don't tilt at windmills? Excellent advice! Relevant. Founded not just in the sentiment that says we mustn't say something which might be mean about an autistic person, but rather deals with the deeper and much more complicated questions of humanity, and how and when it exists and is changed.
But show me a person who knows they wouldn't take a magic pill that removed many of the things that make life more difficult, though not necessary less joyful, and I'll ask how they know that and be dubious of their answer unless a similar challenge in the past can be pointed to. But to point out that we oughtn't even consider such an impossible scenario, well hey, that's worth talking about!
It's good practical advice, I agree. But of course we should consider it, if thinking about the hypothetical brings us greater understanding of what we actually value in life. Don't plan on a cure for autism, of course--but think about how you'd feel if there were one. In itself, the understanding you thereby gain is a valuable thing.
Posted by Darth_Mauve (Member # 4709) on :
Lots to discuss here. Let me start with:
A) Fecal Transplant...sorry, but I'm not taking s*** from anyone.
B) There have been comparisons of higher functioning folks with Autism and Homosexuality. Would we force gay couples to be cured of homosexuality if such a thing could exist? If not, why the Autistic?
If there were a cure, would you take it?
C) That is the plot of at least 2 X-men movies, and about 1/4 of the X-titled comic books.
D) This just proves that the underpaid philosophy majors out there can find important work--"If after a cure I am no longer who I was, is it a cure? Am I ever who I was? What is a Cure? What is I?"
Posted by Samprimary (Member # 8561) on :
quote:Would we force gay couples to be cured of homosexuality if such a thing could exist? If not, why the Autistic?
Moving past all the other reasons why this is such a weird comparison, I'd say a HUGE good reason is that the disadvantages of autism usually pertain directly to specific disordered functioning and the fact that it is a straight-up disability in most cases, whereas homosexuality's 'dysfunction' all but vanishes without social stigma attached. You could get rid of autism stigma and still have severe functionality issues. There's no "high functioning" versus "low functioning" homosexuality.
Posted by Synesthesia (Member # 4774) on :
I got to question the validity of low functioning and high functioning. Amanda Baggs would be considered low functioning because she can't speak and needs caretakers, but she's incredibly intelligent.
Posted by Samprimary (Member # 8561) on :
Don't question the validity of it. There is absolutely low functioning spectrum individuals with autism. A large portion of autistic children are incapable of living independently. Many are functionally incapable of even clothing or feeding themselves.
Posted by Synesthesia (Member # 4774) on :
It's misleading because there's people who are considered high functioning for being able to speak, but they can have a lot of invisible difficulties that folks don't notice as much because they can speak. Amanda Baggs can't live independently, but she's brilliant.
Posted by Samprimary (Member # 8561) on :
That there's some observational lay misrepresentation of someone's functional differences from other individuals doesn't mean that there isn't a very pronounced spectrum of functionality with autistic people, which is what I'm talking about. For example, amanda baggs being unable to live independently is an indicator of her functional differences from a typical non-autistic person. She just serves as a person who was neglected due to an incomplete diagnosis that made her out to have a far more complete operational dysfunction than she actually had.
Posted by sndrake (Member # 4941) on :
quote:It's good practical advice, I agree. But of course we should consider it, if thinking about the hypothetical brings us greater understanding of what we actually value in life. Don't plan on a cure for autism, of course--but think about how you'd feel if there were one. In itself, the understanding you thereby gain is a valuable thing.
I disagree, especially when it comes to discussions that are meant to somehow direct our thinking on public policy.
In my experience, hypotheticals are used most often to gain agreement to applying certain things in extreme cases - which then get applied in much less extreme cases. A classic example is the question of how far one would go to extract information from someone who you *knew* had knowledge of a terrorist event you *know* will happen within 24 hours. To my knowledge, we've never had such a prisoner, but 'extreme' interrogation techniques got used on plenty of other prisoners.
Hypotheticals also get used as a tool to make painful electric shocks considered an acceptable 'educational' method by presenting some person whose self-injury is so severe - and for whom nothing else has worked or ever will work - that to not use the painful electric shock would be unethical. In practice, of course, the method is used on people with far less serious behavior issues.
Peter Singer also slipped in a hypothetical in an essay in the NY Times Magazine a couple years ago to justify severely limiting the health care one would allow for people with severe disabilities in a 'rational' rationing plan.
I think we learn even more about ourselves when we actually study, analyze and critique real events, practices, etc. than we do when we deal with hypotheticals.
Posted by sndrake (Member # 4941) on :
Samprinary said:
quote:That there's some observational lay misrepresentation of someone's functional differences from other individuals doesn't mean that there isn't a very pronounced spectrum of functionality with autistic people, which is what I'm talking about. For example, amanda baggs being unable to live independently is an indicator of her functional differences from a typical non-autistic person. She just serves as a person who was neglected due to an incomplete diagnosis that made her out to have a far more complete operational dysfunction than she actually had.
First, I'm not sure that's an accurate assessment of Amanda Baggs - I don't think she claims the 'low functioning' parts of her life are due to neglect.
Second, I think that you and Syn are operating under different assumptions. You seem to think that such disparities in different parts of 'functioning' within one person are rare - and the result of neglect and/or misdiagnosis. Syn - I think - is assuming that autistic individuals can often have pretty significant highs and lows in terms of their personal functioning. (Not happy with how I worded that, but can't think of anything better right now.)
Personally, I am more with Syn on this. Think of so-called 'savants.' People who have limited social skills or have trouble making change - but are highly skilled at playing piano, specialized areas of math, etc. Isn't Amanda Baggs just a variation of that theme?
Posted by Kwea (Member # 2199) on :
quote:Originally posted by Synesthesia: The thing is, you got to wonder what the autistic individual wants. Does Tony WANT to be cured? Life with autism isn't easy, but people tend to focus more on the it's so tragic aspects more than the whole picture. And the leave people with autism out of the dialogue altogether. In my case, as difficult as my sensory issues are, I am not sure that microflora thing is worth it. No, definitely not. Ew. Autistic people's brains work in unusual and interesting ways. I wish there were more focus on that, and less on trying to wipe us out.
I know, Syn. I doubt he would want to be cured now, and that is fine. It's his life, and I love him completely the way he is now. But it doesn't change the fact that he will never marry, have kids, live on his own, support himself, or be able to understand and interact with other people on a regular basis.
And he is considered high functioning.
I don't advocate forcing cures on people who don't want them, and NONE of the studies linked to are talking about that. They are talking about preventative cures, to prevent this from happening more often.
And I think that is a noble effort, one I stand behind completely.
Posted by Synesthesia (Member # 4774) on :
Ugh. Peter Singer. I hate that guy. What I would like is the concept that perhaps there are different ways of thinking. I'd like to see non-autistic people integrate autistic people into society based on their strengths and to help them with their weaknesses. Yes, I'm a dreamer, but it's not like I'm the only one. Hopefully JRC will be shut down or at least not allowed to shock a teenager 31 times for not removing his jacket.
Posted by Kwea (Member # 2199) on :
quote:Originally posted by mr_porteiro_head: You two are, IMO, grossly underplaying the effects of autism in one's life. It is simply not comparable to learning about a new endeavor you'd never heard of before.
Exactly.
I can't imagine anyone wanting to go through what my cousin had to go through as a child. He manages better now, but his symptoms made a fractured pelvis seem like a flesh wound.
Posted by Synesthesia (Member # 4774) on :
Then again, how does one know he WON'T marry? I was told I'd still be living with my parents when I was a kid and I'm not. I'm not married yet because I refuse to mate until I learn how to set boundaries and stand up for myself. It's a serious problem. And how does one attract non-abusive people too? That's one reason why I don't date much and the fact that that people annoy me.
Posted by Kwea (Member # 2199) on :
quote:Originally posted by Synesthesia: I got to question the validity of low functioning and high functioning. Amanda Baggs would be considered low functioning because she can't speak and needs caretakers, but she's incredibly intelligent.
And she wouldn't lose that intelligence by gaining the ability to clean herself or talk.
Posted by Kwea (Member # 2199) on :
He can't support himself, has to live in a group home, and can't stand interacting with other people on a regular basis. Getting married usually involves another person.
I con't think of anything worse for him other than getting married and having a kid....or either one of them without the other.
High functioning is a broad, imprecise term.
Posted by mr_porteiro_head (Member # 4644) on :
quote:And she wouldn't lose that intelligence by gaining the ability to clean herself or talk.
You have no way of knowing that.
Posted by Destineer (Member # 821) on :
quote:I disagree, especially when it comes to discussions that are meant to somehow direct our thinking on public policy.
I'm not sure why you say "especially" here instead of "only."
quote: In my experience, hypotheticals are used most often to gain agreement to applying certain things in extreme cases - which then get applied in much less extreme cases. A classic example is the question of how far one would go to extract information from someone who you *knew* had knowledge of a terrorist event you *know* will happen within 24 hours. To my knowledge, we've never had such a prisoner, but 'extreme' interrogation techniques got used on plenty of other prisoners.
This is a good point. There's always a danger that the knowledge of ethical principles we gain through considering extreme thought experiments will be misunderstood in such a way as to justify bad actions. This can easily happen in cases like the one you describe, where people (including scholars as well as laypersons) wrongly assume that reality resembles the thought experiment in the relevant ways.
Knowledge often carries with it some associated risk; we've seen that in spades with scientific knowledge, and I think it's true of ethical knowledge as well. That doesn't mean the knowledge itself isn't valuable.
To turn the example you raised around a bit, ticking time bomb scenarios are among the thought experiments that have convinced me that ethical (as opposed to political) libertarianism can't be true. That's an important part of my ethical knowledge that I wouldn't want to be without.
quote: I think we learn even more about ourselves when we actually study, analyze and critique real events, practices, etc. than we do when we deal with hypotheticals.
It is, of course, possible to do both. And even for both practices to complement each other: one might criticize the real-world assassination of al-Awlaki on the grounds of what it implies about the powers of the President in certain hypothetical situations.
Posted by Destineer (Member # 821) on :
A lot of students in philosophy classes get impatient with discussion of hypotheticals. I always tell my students, hey, maybe if a few hundred years ago people had asked the question, "what if there were some way to cure Parkinson's, but developing it required you to kill a bunch of fertilized but undeveloped human embryos," maybe we'd be in a better position now to work out issues about stem cells in the present day.
Posted by sndrake (Member # 4941) on :
quote: This is a good point. There's always a danger that the knowledge of ethical principles we gain through considering extreme thought experiments will be misunderstood in such a way as to justify bad actions. This can easily happen in cases like the one you describe, where people (including scholars as well as laypersons) wrongly assume that reality resembles the thought experiment in the relevant ways.
That doesn't jive with my experiences at all - whether reading a 'scholar' - or dealing with him in person, or dealing with these hypotheticals in any context, they come across as deliberate manipulations. Agree to the extreme case, and now that you've conceded an extreme case, you're now arguing about where the lines are - point being, you lost the argument. (Works in the Singer NY Times Mag too - first half of article is wonky and empirical, then gets on to rationing scheme with a 'hypothetical' proposition about quadriplegics - that's not ignorance at work)
The *esteemed philosopher* George Bernard Shaw probably provided the best and shortest example of the manipulation technique that I know of, even if it's dated and sexist (and somewhat misgynist as well):
quote:Shaw: Madam, would you sleep with me for a million pounds? Actress: My goodness. Well, I'd certainly think about it. Shaw: Would you sleep with me for a pound? Actress: Certainly not! What kind of woman do you think I am?! Shaw: Madam, we've already established that. Now we are haggling about the price.
OK - he left off 'hypothetically' at the start of his thought experiment, but the principle and practice match. Posted by Destineer (Member # 821) on :
I'm not sure I'm groking your main point here. To stick with the ticking time bomb example, do you think we'd be better off not knowing what the right thing to do would be if we were in the same situation as Jack Bauer in season 2 of 24? Do you think we shouldn't care what would be right in that kind of case? Or do you just think the real world never, in fact, puts us in that position?
I agree with that last thing.
quote:That doesn't jive with my experiences at all - whether reading a 'scholar' - or dealing with him in person, or dealing with these hypotheticals in any context, they come across as deliberate manipulations. Agree to the extreme case, and now that you've conceded an extreme case, you're now arguing about where the lines are - point being, you lost the argument.
Well, if your position was that you must never torture, no matter what, and the hypothetical shows that it's right to torture in an extreme case, you have lost the argument. If your position in the first place was that torture is almost always wrong, and here is where we draw the line, then you haven't lost.
Posted by Destineer (Member # 821) on :
Anyway, deliberate manipulation or not, a good argument is a good argument, and if you can't find a flaw in its reasoning you should accept its conclusion. A lot of people are dicks, that doesn't make them wrong.
Posted by sndrake (Member # 4941) on :
When you answer a 'hypothetical,' you really *don't* know anything of practical use. There is no real urgency, there are no real-life consequences, and when asked to say something about what we'd do without the real-life consequences, the answer is meaningless.
I deal with policy issues. So when this point comes up in a policy debate, I reply that policy should be dealing with things most likely to happen and within the full context of the real system under discussion (how many discussions of 'safeguards' in the medical system talk about the lack of reporting of lethal medical errors?). So my stance is that I refuse to deal with hypotheticals and insist we deal with the very real, very flawed, and often unethical systems that are the current reality.
I refuse to play a game in which the rules are rigged to guarantee I lose - and besides, are non-reality based.
Posted by sndrake (Member # 4941) on :
quote:A lot of people are dicks, that doesn't make them wrong.
Oddly enough, things much like this have been said about me. By my friends.
Posted by Dan_Frank (Member # 8488) on :
quote:Originally posted by Destineer: Anyway, deliberate manipulation or not, a good argument is a good argument, and if you can't find a flaw in its reasoning you should accept its conclusion. A lot of people are dicks, that doesn't make them wrong.
I love you, man.
Posted by Destineer (Member # 821) on :
quote:When you answer a 'hypothetical,' you really *don't* know anything of practical use. There is no real urgency, there are no real-life consequences, and when asked to say something about what we'd do without the real-life consequences, the answer is meaningless.
Do you like science fiction and fantasy? Do you think that we learn nothing of worth from watching characters wrestle with situations that will never, in fact, come about in real life?
We will never really have the ability to predict who's going to commit murder. Does that make the central theme of "Minority Report" meaningless?
Also, as my stem cell example was meant to point out, sometimes (if only rarely) the strangest hypothetical situations do actually come about.
Posted by Destineer (Member # 821) on :
quote:Originally posted by Dan_Frank:
quote:Originally posted by Destineer: Anyway, deliberate manipulation or not, a good argument is a good argument, and if you can't find a flaw in its reasoning you should accept its conclusion. A lot of people are dicks, that doesn't make them wrong.
I love you, man.
Posted by sndrake (Member # 4941) on :
quote:Do you like science fiction and fantasy? Do you think that we learn nothing of worth from watching characters wrestle with situations that will never, in fact, come about in real life?
To me, they're entertainment. I watched 'Buffy' 'religously-in-an-agnostic-kind-of-way,' but no, I don't think I learned anything of worth from that or just about any fiction I've read in terms of helping figure out 'real life.' Fiction is a closed system - the author decides what the rules are, what rules you need to know and what rules are irrelevant. The deck is stacked toward a conclusion that is there to meet the author's standards. I'm along for the ride.
quote:We will never really have the ability to predict who's going to commit murder. Does that make the central theme of "Minority Report" meaningless?
It makes it interesting and entertaining. Again, the self-contained universe of the producers/authors don't necessarily have much bearing in the much more complex real world. Ride. Along for. Me.
quote:Also, as my stem cell example was meant to point out, sometimes (if only rarely) the strangest hypothetical situations do actually come about.
That's a stretch. But even so, it does not make the case that it should help shape policy at that time.
Posted by sndrake (Member # 4941) on :
quote:Anyway, deliberate manipulation or not, a good argument is a good argument, and if you can't find a flaw in its reasoning you should accept its conclusion.
Not necessarily. If the argument is meant to distract from messy current realities it's more a non sequitur than an argument. Asking me to comment on a hypothetical which has been neatly packaged for no other reason than to make it a losing proposition for the other person is not really an argument. It's demanding I step into a trap. I have a choice not to do do by explaining how irrelevant to trap is to the real argument. (I'll also generally comment that it's possible to construct scenarios in which theft and murder are ethically justified - but we don't build policy on hypothetical, extreme, or rare examples.
Posted by sndrake (Member # 4941) on :
quote: A lot of people are dicks, that doesn't make them wrong.
Oddly enough, things much like this have been said about me. By my friends.
Correction: I just checked my email. That last sentence should read "By my friend."
Posted by Destineer (Member # 821) on :
quote:It makes it interesting and entertaining. Again, the self-contained universe of the producers/authors don't necessarily have much bearing in the much more complex real world. Ride. Along for. Me.
OK. I think the movie raises deep questions about free will, and whether we're responsible for what we do as opposed to who we are (the way we're disposed to behave). It's also an entertaining flick on its own merits, of course, so I don't mean to undermine your reasons for appreciating it.
Parables are another example of what I'm talking about. Aesop's fables are often unrealistic, but they point toward principles that the reader can learn from.
quote:That's a stretch. But even so, it does not make the case that it should help shape policy at that time.
I tend to agree. To get back to the original question, my position was never that a hypothetical cure for autism is interesting as an idea that should influence public policy. It's interesting in its own right, for other reasons, because it gets to the heart of tough questions about the mind, identity and the principles of right and wrong.
Posted by dkw (Member # 3264) on :
quote:Originally posted by Destineer: Anyway, deliberate manipulation or not, a good argument is a good argument, and if you can't find a flaw in its reasoning you should accept its conclusion.
Or you should examine its premises.
Posted by Destineer (Member # 821) on :
Right, I meant to include plausible premises under the umbrella of flawless reasoning.
Posted by Destineer (Member # 821) on :
I should also say, sndrake, that I agree with you (and many judges) that tough cases make bad law. I tend not to think about things from a policy point of view--partly because I'm just naturally interested in tough cases! Anyway, I'm more interested in moral right and wrong than good or bad law. When it comes to stealing and murder, I like to think about the ambiguous cases where these acts might be justified, rather than the clear cases that, as you say, rightly form the basis of our legal system. Because I think these tough cases have more to teach us about fundamental ethics.
Posted by Samprimary (Member # 8561) on :
quote:Originally posted by sndrake: Samprinary said:
quote:That there's some observational lay misrepresentation of someone's functional differences from other individuals doesn't mean that there isn't a very pronounced spectrum of functionality with autistic people, which is what I'm talking about. For example, amanda baggs being unable to live independently is an indicator of her functional differences from a typical non-autistic person. She just serves as a person who was neglected due to an incomplete diagnosis that made her out to have a far more complete operational dysfunction than she actually had.
First, I'm not sure that's an accurate assessment of Amanda Baggs - I don't think she claims the 'low functioning' parts of her life are due to neglect.
No, other way around. She was diagnosed as being low functioning far in excess of what her actual mental capacities were, and this was due to neglect in diagnosis, either through procedure or attention.
Posted by Samprimary (Member # 8561) on :
Coming to a medical journal near you: Dr. CT's Miracle Bleach Cure
Oh. God.
I have asthma, man. You trying to kill me?
I laughed till I wheezed out a lung. Maybe two.
Ahahaha. Should have added a 'no more tears' joke too.
You know? I am still laughing.
Needed this today, Samp.
Posted by Rakeesh (Member # 2001) on :
CT, do you have anything that's good for cleaning windows and curing sore throats? I'm an efficient parent who likes to see through windows on a budget who won't cater to the Western Medocracy!
Posted by Rakeesh (Member # 2001) on :
If not, why not? Have they gotten to you too?
Posted by Samprimary (Member # 8561) on :
even the very term 'western medocracy' gives me hives
FUN FACT: i'm watching a girl go through the Master Cleanse because they don't trust western medicine
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