Revison/rejection of "Anti-cure Cowardice"

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elan_i
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28 Jan 2008, 4:16 am

In conceiving of the analogy I discuss below, I found myself revising the position I expressed recently at "Anti-cure Cowardice" http://www.wrongplanet.net/postt54644.html

I now wonder if any Asperger and autistic person who objects to all activity regarding treatment and cure are being perfectly rational, that is, making objections that are in their best interest and well-being. It seems they may very well be so, and as such, are completely justified in refusing to be subjected to any discussion about treatment, cure, and disability, and further justified in objecting to scientific, medical, political, and social efforts put into treatment and cure development.

I wonder if the following hypothetical analogy would be more relevant for addressing the anti-cure and pro-cure issues I discussed in my original post at "Anti-cure Cowardice" http://www.wrongplanet.net/postt54644.html and more relevant than the hypothetical thought experiments I later gave in that thread at
http://www.wrongplanet.net/postp1173764.html#1173764

Alien human beings come to earth and approach neurotypicals, and say they would like to offer a treatment or cure that would improve, either dramatically or to a significant degree, their core abilities (communication, emotion, thinking, social, behavior, sensory). Neurotypicals observe the aliens, but are not able to observe anything of value to them, because the neurotypicals have never experienced what the aliens are like. The aliens simply seem very different, and they do different things, and that is all. In this hypothetical analogy, the aliens have, in fact, significantly more extensive abilities than neurotypicals.

To accept the treatment or cure being offered by the aliens would be to do something totally blindly, and blindly take the word of the aliens. It would seem therefore, at this point, very rational for the neurotypicals to not accept the treatment: it is irrational to accept a treatment blindly, that is, with no awareness of what effects it may have, and whether such effects would be of more value than their current state of well being.

So at this point in the analogy, I think the neurotypicals are doing what is most rational.

The aliens themselves can then, hypothetically, do a treatment that causes them to be like neurotypicals, and upon entering a state that is, in fact, worse than they usually are, they will object this neurotypical state, and tell neurotypicals of this. But nonetheless, neurotypicals are unable to observe the difference. They do observe that the aliens became like them (neurotypical), but they still can't observe the difference between alien and neurotypical.

At this point, even with this demonstration by the aliens, the neurotypicals have no basis to accept the treatment/cure they are offering, and to do so would be to blindly accept the aliens word for it. The only difference here is that it is slightly less blind than the first situation above. In this second situation, the aliens did experience what is was like being a neurotypical, and are clear it is fundamentally worse than being an alien in terms of the degree of core abilities (communication, social, emotional, sensory, thinking, behavior). But even so, while the aliens are clear about this, neurotypicals are not, still. It would still be completely blind of the neurotypicals to accept this treatment/cure.

It perhaps is the case that the only basis neurotypicals could have to accept the treatment being offered by the aliens is if some neurotypicals took the blind risk, or gamble, and tried it. If the treatment did cause neurotypicals to enter a state that they find more beneficial, then they could report this to other neurotypicals, and perhaps other neurotypicals would find this basis to be more acceptable rationally. But still, the neurotypicals are not able observe the improvement that the former neurotypicals describe and demonstrate to them.

Despite this possibly more rational basis for neurotypicals accepting a treatment, a neurotypical could argue that the neurotypicals who underwent the treatment/cure have entered into a state in which they are only biased against neurotypicals, and/or only delusional about their supposed advancements and improvements over neurotypicals. A neurotypical could argue that when a neurotypical becomes an alien, they are no longer able to observe the good of being neurotypical, and as such, are formally biased, and as such, have no basis to say that neurotypicals should become like aliens. And as such, neurotypicals now have no basis to accept the treatment/cure.

I think that the situation between neurotypicals and auties/Aspies could be formally like this situation, which is a revision of my previous original post and several subsequent posts at this thread Anti-cure Cowardice http://www.wrongplanet.net/postt54644.html

So again, I now wonder if any autistic person who objects to all activity regarding treatment and cure are being perfectly rational, that is, making objections that are in their best interest and well-being. It seems they may very well be so, and as such, are completely justified in refusing to be subjected to any discussion about treatment, cure, and disability, and further justified in objecting to scientific, medical, political, and social efforts put into treatment and cure development.



Last edited by elan_i on 31 Jan 2008, 2:24 am, edited 3 times in total.

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28 Jan 2008, 4:50 am

I can see you TRIED to put it nicely, but you still start out with the assumption that NTs are better than Aspies. You're entitled to your opinion, but I and other Aspies don't see it the same way. NTs have their strengths and weaknesses, and I have mine.

And if you get tired of "simplistic" arguments, its because I don't particularly feel like going into every piece of why I think and feel the way I do about this. It would be nothing more than a rambling manifesto that would bore everyone to tears, and probably wouldn't change your mind anyway. You have done your best to express your feelings, and have obviously seen people respond in anger to your (un?)intentional insults. We get it. Your views are agreed with by some, and strongly disagreed with by others.

A common trait of Asperger's seems to be hardheadedness. You've stated your views, as has a good number of people on the other threads. I think we'll just end up rephrasing what we say until all of us get bored, and I'm getting there.


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TheFace
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28 Jan 2008, 5:07 am

Cure me of what, being different then everyone else? I dont want to be cured because this is me, this is ALL I KNOW.


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28 Jan 2008, 7:48 am

Its just down to numbers.If the NT brain setup was found in 1 in 300 people or 1 in 50 or whatever a cure would be demanded by some of those NTs and Aspies who felt sorry for the poor unfortunate NTs.Charites and pressure groups would demand govt do something to help the sufferers of this debilitating condition,the symptoms include constant rabbitting on about the weather,asking how are they,you Uncle Tom Cobley are,lack of attention to detail,inane following of trends and fashions,keeping up with the Joness and a range of other symptoms.



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28 Jan 2008, 11:16 am

Not numbers just people have a tendency to think a bad idea is a good idea, hence society replaces a problem with something they think helps, but end up making it worse because they don’t bother finding out the root of the course of the problem's in question rather than applying they own clouded mind of fixing something that is not a problem to the person but for the other people without it... & no one is learning from this mistake, like every other group I guess we have to go through 150 years or so of bs caused by society, I like the terminology of saying don’t blame other people for your problems, but when people are causing the problems it’s pretty hard to think it’s mostly your fault & looking at the chaos it does seem to be society, I love it when they go oh my god how is a human capable of that, do these people live in the same reality I do or not?...

I know one thing before you can help someone you need to find out the root courses of the problem's or you just waste your time... Hence why the NAS been going so long & they just noticed the discrimination act does not cover us. Too much talking not enough action, normaly takes them 10 or so years from talking to getting something in place, & normally it fails anyway... Great aint it engineers are great at solving a problem on a mega structure & these people are so bad at it, maybe they need to go into all this bs training they give you for jobs...

I love the idea of fixing a fire problem that is caused by a signal that happens when allot of electronic goods are in one place, so they stick filters in that detect the signal & send a reverse signal to cancel it out, would not think a fire could start by a signal would you... That's why some casinos went up in flames before they figured that out...


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28 Jan 2008, 11:38 am

elan_i, at least this time you found a way to phrase your question that doesn't baldly state, as one of its base axioms, that NT is better, and therefore anyone who denies desiring such a state is either delusional or afraid. (The only question you explored on that thread is "Why are you afraid?" - hardly conducive to civil discourse.)

This statement still contains some egregious assumptions, however. I have yet to find anyone here who is virulently against the very concept of treatment, or even cure (were such a thing possible, which it is not - the neuroanatomy of an adult is not so easily adjustable). What many of us stand foursquare against is the attitude that all avenues, no matter how quackery-filled or potentially dangerous to the patient, must be explored, because it's just so horrible to be autistic that we'd all be better off dead. (This attitude has actually been expressed in testimony from members of Autism Speaks before the US Congress and Canadian Parliament.)

Now, I am virulently against the idea of changing me, or my daughter - we're happy the way we are, thanks. But if you want to stuff your body with substance X so you can be more like the "normal" people around you, knock yourself out!


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28 Jan 2008, 11:58 am

If the cure was available, I still wouldn't take it. I enjoy being different, because I am different and I don't try to be so. I also don't want therapists messing with my unique mind. I'd rather be into Routemasters, than what the latest hair, make-up and fashion trends for women are. I also don't wish to lose my artistic ability, or my Cockney accent. If you want to make yourself more "normal", go for it. Just don't impose yourself on other people.


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Glencannon
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28 Jan 2008, 2:44 pm

I reject the idea that we need to be cured. That implies that there is something wrong with us. There is nothing wrong with being different. Instead of looking for a cure we should should be trying to promote understanding. With understanding comes acceptance, and that is what we need.



However if you want to propose something that would help control the negative side effects of having HFA/AS I would be for that. Say if I could take a pill that would make my eyes less light sensitive I would be glad for it.



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28 Jan 2008, 4:02 pm

The logic followed through solidly, the hypothetical analogy was astoundingly accurate.

But why will it be up to Aspies and those who function highly, to determine the cure? I don't think my voice, as an Aspie, should count against a cure, should it be speaking up against someone severely autistic who wants a cure.

It seems straightforward to me. I am an Aspie, I am fairly well off, I can fit in to soceity, I will be able to live on my own. I don't have a need of a cure, nor do I want to be cured. But I will not stand in the way of someone who does want a cure. It's my choice to deny being cured, but it is not my choice to deny others a cure.


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28 Jan 2008, 4:11 pm

When will people stop trying to point out that aspies are somehow broken - we're different - not broken.

Throughout history, there have been instances of people trying to cure people of aliments which weren't necessarily problems - and often the cure is WORSE than the aliment.

- Curing mental patients by lobotomy

- Australian settlers tried to cure Aborigines.

- The Ku-Klux Klan tried to cure a lot of black people (sorry my US history is crap so anyone want to correct my spelling/PC etc - please do).

- The Spanish tried to cure the Aztecs (amongst others) of heathen religions.

- Hitler tried to cure a lot of Jewish People.



Stop picking on people because they are different - hasn't history taught you anything.

Neurotypicalism is just an idea - nothing more. I know plenty of NTs who suffer from drugs, alocoholism etc, who are in need of a "cure" much more than most aspies.



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28 Jan 2008, 4:11 pm

CockneyRebel wrote:
If the cure was available, I still wouldn't take it. I enjoy being different, because I am different and I don't try to be so. I also don't want therapists messing with my unique mind. I'd rather be into Routemasters, than what the latest hair, make-up and fashion trends for women are. I also don't wish to lose my artistic ability, or my Cockney accent. If you want to make yourself more "normal", go for it. Just don't impose yourself on other people.


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28 Jan 2008, 4:27 pm

I would take the cure.



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28 Jan 2008, 4:48 pm

There is a serious flaw in the analogy by the OP.

We are NOT aliens. NT's would react with much more fear to beings from another world, so while the reaction to something completely unknown may be rational - this does not equate with fellow human beings like us ASD people.

The key here is education. Knowledge. Sharing said knowledge. Alien knowledge would be way beyond human understanding. To an open NT mind, understanding the Autistic Spectrum is not. It's difficult and complicated, but not beyond human understanding.

NT's would react with more sympathy to a fellow human being than an alien. Seeing us as aliens is actually part of the problem we are dealing with on the issue of cure. Why talk about cure? We should be aiming to get along - that is what diversity is all about.

It would be far more accurate to recognise the Autistic Spectrum as a human culture, not an alien race unlike humanity as a whole.



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28 Jan 2008, 7:02 pm

OP, why didn't you address my question about "curing" left-handedness? Or freckles? Or red hair?

Do you long for the days when we could burn "weirdos" at the stake? Isn't it awful that we can't all be exactly like teevee families from the fifties?


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28 Jan 2008, 7:16 pm

elan_i wrote:
I now wonder if any autistic person who objects to all activity regarding treatment and cure are being perfectly rational
Sounds like a strawman to me. Who objects to absolutely ALL activity?

I'll take a swipe at this without involving higher functioning questions, at first, as a way of avoiding some visceral reactions for a moment while I make a few points. Then I'll gently bring this back on point.

I have a profoundly autistic daughter, who is 23 and operates at about the level of a 5 year old. She has grand mal seizures (tonic clonic, to the modernist purists out there), too. Would I help her if I could? Yes. Am I glad there are drugs to help with her seizures? You are darned right I am. Do I want even more options there? Yes, I do. Would I want some means found to help remove some of the limitations imposed, either by way of mental cognition or her reactions to stimuli that inhibit some things like going to the dentist to have her teeth cleaned without needing a general anesthesia? Sure, I suppose so.

But do you know how much guilt is laid upon parents, self- and otherwise, regarding "not doing the right thing" or "being a good parent?" Guilt often preyed upon by charletains who offer "a cure" and then quite literally yell at parents, who may call them asking for more details but then not willing to buy right away, telling them that they are very bad for not spending the $5000 or $10000 it will cost to buy the service for a few days or a week? Blaming them for forcing their own children to remain sick? When the whole thing is a complete sham at the outset, sold to parents in the most vile of ways?

I've been through facilitated communation with a keyboard being placed in front of my daughter and then being explained to while I watch them hold my daughter's hand through spelling the word "firetruck" as part of an answer to a question they themselves posed for me -- to show me just how 'smart' she is -- and then not being able to ask her a simple question, "What's the name of your dog?" and get the right answer, "Sam." The whole thing was simple bullcrap from the start and it was made abundantly obvious just watching the antics. Yet they also had other mothers there (this was a weekend demonstration by a company visiting from across the country) who were just crying out loud, "I had no idea my son wanted to go to BurgerKing instead of McDonalds!" It was a revival atmosphere and disgusting! A year later, our local classroom teacher got all crazy into this facilitated communication and we wound up accused of sex abuse on the basis of this teacher's "communication" with my daughter -- the result being a microscropic examination of my daughter at a hospital by a physician trained in this area, telling us afterwards that in most cases he works on he is unable to offer an unambiguous diagnoses but in our case it was quite clear to him there was no abuse and he wrote his report, accordingly. But can you imagine what we went through as a result of this "cure?" And this by no means was the first or last turmoil we have gone through for ideas as crazy-minded as this.

It's not innocuous! Do you understand??? It has an impact, these snake oil salesmen and their businesses. A real impact on real lives, making even more difficult what is already not a very easy situation for those who must wake up each and every day and face the new day ready to tackle it. Those of us on the ground, cleaning up the messes each day, brushing teeth, getting out the medicine for seizures, dressing our children, taking them to doctors, navigating the barrages dealt out to us from every corner -- not just the ones most of us face, but so many more from so many other corners that most folks never have to deal with -- it is not a particularly welcome thing. Snake oil salesmen have no problem working the guilt issue to make a sale, pressing it for every nickel's worth, pushing the buttons, etc. And if you buy these things, you are still left with no solution and just a lot less money to deal with the problems that exist and no fewer snake oil salesmen still lined up at the door to continue to kick you in the shins after the last one is gone.

There is more to this, as well. It's about acceptance of someone as being whole and not something broken to be fixed. Which is getting to your question. Even in my daughter's case, someone severely disabled and quite simply unable to function in a society on her own, I liked her for who she was and accepted her completely. She was (and is) a lot of fun in many ways and has a quirky personality that I've grown to love in its own right. She deserves that acceptance and does NOT deserve to be rejected each and every day she lives or made into some kind of cross that my wife and I have to bear in our lives, like an albatross. I like her, a lot, for who she actually IS. None of this means I wouldn't want to improve her life, if I could. And if she could communicate better with us, it would certainly help improve a relationship we have that is already good. But she also deserves to be fully accepted by us and taken on her own terms, not rejected each and every day. And that's what pursuing snake oil cures often does to families. It leads them away from something every single child deserves to have, acceptance. (Probably all of us, but that's another topic.)

I put out a newsletter many years ago. The first issue had 400 copies and my wife and I were soon getting calls from parents we didn't know. I remember, one day, getting a call from one mother who talked about her problems (mostly the same as those we experienced with our daughter, as her son was also similarly profoundly autistic) and what she was doing. It was like a soccer mom! She was doing sign language (paid assistant every week), vitamin therapy, homeopathy, Berard sound therapy (a 'French' thing imported into the US and sold to her by a psychologist here in my state), and a lot of other things. Then she said, "He isn't getting better. I'm still cleaning feces off the wall. When is all this going to end?"

I just sat there on the phone. I didn't know what to say to her. I was going through all the same things with my daughter, in terms of general supports. I wasn't doing homeopathy (as that is pseudo-scientific nonsense) but I'd been through most of the rest, including sign language (though not as intense) and Berard sound therapy (just to see.) But I didn't feel the same as she did, either. I didn't want to know when it was all going to end. After I got off the phone, it dawned on me why that was. Something crystalized for me.

I had accepted my daughter and I liked her. When I picked up some mess, her clothes or some spilled food for example, she made, I did so like I would for anyone I loved. When you vacuum or clean the house you share with someone you love, it doesn't grate on you. It's just something you do, when it is for someone you actually like. But when you are forced to do the exact same things for someone you do not like or for someone you think is broken and you reject with feelings of needing to "fix them," it wears you down horribly. Every day becomes a matter of suffering through it.

The same things... but the big difference in attitude that results is whether or not there is acceptance and love, or not. And a rabid pursuit of trying to "fix a broken child" is that each and every day you are focused on rejecting your own child, someone who deserves better than that from their own parents. Snake oil cures prey upon feelings of inadequacy and guilt and pressure families into spending money and time pursuing false hopes, all the while helping them to completely lose sight of what is truly going to be valuable in their lives -- developing and improving upon healthy relationships through acceptance and love.

Now, keep in mind that so far I've been speaking in terms of autism. It's not a medical diagnosis. It's one that is a matter of check-off boxes and summing totals to compare against some norm. It's behavioral, not medical. Odds are, there are a variety of different things going on here with similar externalities -- just as a century ago "consumption" had the appearances of a "disease" while it really was a number of diseases with similar external effects. Whatever a cure might be, we aren't going to know that much until we learn how to truly diagnose people. In the meantime, what really counts isn't offering the random cure and chasing it down, but instead helpful mitigations in the real lives of real people that will matter to them to get by for a time.

Sure. Study and research things in the background until some truly scientific knowledge can be developed here. But while that is going on, we all need to get on with our very real lives. And what is really going to make more immediate differences, day to day, are relationships that are accepting and loving ones and where people watch each others' backs and pick up for each others' deficits in the meantime.

Do I dislike people pushing cures? Pretty much, yeah. Mostly, though, because they get to walk away. If what they offer doesn't work, they lose a customer and go elsewhere. On the other hand, I have to live the life, walk the walk, stay the course. I can't go somewhere, I can't get away, I can't just leave. What I deal with (my daughter, I'm currently talking about) is with me each and every single day and I cannot just disappear or walk away. Not morally, anyway. Legally, I suppose I can.

I like my daughter a lot. And yes, even so I would consider helping her if there were good, solid, scientific knowledge that could be applied to her case in diagnosing the specifics and recommending mediations. But we aren't there, today. Not even close to it. And yes, despite that I have been through a lot with her just on the chances. And I've had my life turned upside down by those pressing their wares, as well. In cases where I specifically tried to avoid them, in fact.

Do no harm, they say. These snake oil cures do harm. Even when there are cases that seem to improve, they are usually more the case of misdiagnosis. Ever note how these seem to be younger cases? 4 year olds "cured?" 5 year olds? Maybe an 8 year old? But essentially never for those with a firm diagnosis from a variety of sources and where they are old enough to have very significantly deviated from the norm? In behavioral cases like this, it is all too easy to select the younger cases with an eye towards getting a "greater yield" of "cures."

I am who I am. My wife is who she is. My daughter and sons are who they are. Until the scientific situation gets to the point where this "consumption" issue is much better understood, cures aren't what we need to be talking about. Developing healthy supports and relationships are what are going to matter, on the ground and in the day to day real world we all face.

Yeah, do research. Then get back to me, someday. In the meantime, what matters is acceptance and embracing our differences and finding value in them.

So let me bring this 'round to your question. Two of my children have autism and have been well-diagnosed a number of times. It's a matter of record. We've had the social security system provide their own doctors, we've been through any number of gov't mills on this, and I have been given legal guardianship for my daughter which I have to renew each and every year. In short, I've documentation up the wazoo for my children. Regarding me, its a little different. I grew up when no one "on the spectrum" short of a severe disability was diagnosed. However, I have the professional opinions of two psychologists that I'm also on the spectrum, but these were personal discussions as part of a long relationship for other reasons, and do not qualify as formal diagnoses. Still, let me tell you my limitations. I have a severe disability regarding time sequence and associated memory. I remember events as objects I can rotate and look at, like a painting let's say, but not as sequences of brush strokes that made it. I can't remember what happened first or second, except by way of some reverse engineering of the image itself. What this means for me is that I'm pretty bad at prioritizing and organizing, in fact probably enough so that it does negatively affect my life in important ways. On the other hand, this also means I visualize well. I have always been very adept at mathematics, where time-sequence isn't so much of an issue and where whole gestalts are more the desire. That doesn't mean I'm a grand master at math, I'm not. But I meet people better at it perhaps only a few times in my lifetime, and I work sometimes at Universities as an adjunct professor, so it's not as though I'm just not exposed to people into mathematics. Would I want to cure my time-sequence problems? Yeah, I suppose I'd like to take some pill or get some operation if I knew it would do just that one thing to me and could fully apprehend the impacts. But I don't believe our science is anywhere even close to that point, so I'm not holding my breath. In the meantime, relationships are what truly make a difference in my life. That's where things matter. And for that, much of it is about acceptance and joy for who we actually are and using what we can do well to help others around us while we borrow from others the skills they have that we need.

Maybe you can see how all this plays into what you are suggesting. Maybe not. If not, there it is anyway and don't worry about it. Not your problem, anyway. But my central idea here is that everyone of us have our deficits and strengths. In some, they are more pronounced; in some, more hidden. What's important is forging healthy relationships that supplement us in ways that make the group more whole, more complete, more able to function well. I tend to see a focus on cures, especially in a field like this, as more a matter of unhelpful rejection than of really trying to help.

Of course, you are free to feel that it's stubborn clinging, too. Or simply some folks' desire to just be seen as "sick" (certainly, there are those folks.) But what will count in my life isn't the next fad cure of the day, but instead will be people who listen to my stories and form supporting relationships or ideas that will make a real difference tomorrow when I next wake up to face another day. And acceptance and love and sharing go a lot further for me in that regard. I mean that for my daughter... not just me. She needs these supporting relationships based upon acceptance and love.

Jon


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