Grrrr, vaccine ARE connected with autism. >.< That's a
LeKiwi
Veteran

Joined: 26 Nov 2007
Age: 38
Gender: Female
Posts: 2,444
Location: The murky waters of my mind...
I've read parents who feel that chelation "cured" their children, or that diet changes "cured" their child. Of course, the essential brain wiring was not changed. But the changes were dramatic enough for the parent to feel that the afflication they couldn't live with was gone and, thus, "cured" (it is up for debate if the treatment they believe brought it about really is what created the benefit, of course - separate issue). Not everyone uses the term with the same precision. Once identified, assuming they can be identified, all potential environmental aggrevations will be on the table to be "cured," ie removed, to leave you just with the child you were supposed to have. Who may still be autistic, but has been "cured" of what didn't need to be there.
Yes, many are looking to identify the genes with the goal of being able to abort. I've been around the block enough to know that many well-meaning people will feel that "it isn't fair" to bring a child into this world who is "bound to suffer," or will feel that "I wish I could handle it, but I know I won't be able to." That is the only reason I can see to search for a prenatal test specifically, and I am morally opposed to it.
But the term "cure" is broader than prenatal testing, in the reality of how it is used. The NT world is not as concerned with precision as most Aspies are; it is concerned with the general sense behind terminology. Cure is a positive word, succint, with strong implications, so they use it, even when they really mean "remove various related conditions that make life miserable." That many ALSO use the word "cure" to refer to prenatal testing, which you and I agree will lead to eugenics, does not mean that the former do not exist. They DO, and they are probably the majority. You are applying a standard to the term that not everyone who uses it ascribes to. You need to allow for that, regardless of the fact that when looked at precisely you are right. The intent in how a term used, the concept that the speaker hopes to convey, is every bit as important to conversation as precise meaning.
Again, THANK YOU.
Pepperfire, I have a feeling you're simply not making any attempt to understand what I'm saying; so far as to perhaps be deliberately misinterpreting it for the sake of arguing? Surely things aren't that difficult to comprehend?
Now, back on topic. I'm still a bit dubious on the idea that searching for a cure is going to lead to eugenics. Perhaps it would, and the jaded, cynical side of me would have to agree it will, but I still don't see why that fear should stop people looking for a cure (whatever way you would interpret the word 'cure'). If you don't know the cause of something, how can you fix it/alleviate its symptoms (if we're going to be pedantic)? It's the same fatal flaw that strikes throughout modern medicine - fix the symptom, not the problem.
_________________
We are a fever, we are a fever, we ain't born typical...
What else?
What fear? Whose fear?
I can't see that you can be cured unless you are sick.
I try to avoid "interpreting" words. I just use them for their normal meanings, in contexts that make that meaning clear.
There is no way to interpret the phrase "cure autism" to mean "alleviate some of the concomitant problems sometimes associated with autism"
"fix it"? Is that you saying "cure it" in a different way?
You can't fix what ain't broke.
"alleviate its symptoms"? With ease? Why do you need to know the cause? Most medicine has no idea of the causes of conditions, or of the precise mechanisms how a cure functions, but that doesn't mean you don't use that medicine, does it?
Oh. I forgot. Yes, in your case, it seems it does mean you won't use it.
What! A fatal flaw? Quick - stop using all medicine, it will kill you?
There is no "fatal flaw" - that's just clichéd rhetoric. Modern medicine does try to understand the problems. However, it doesn't wait around for that to be completed before fixing the symptoms.
_________________
"Striking up conversations with strangers is an autistic person's version of extreme sports." Kamran Nazeer
LeKiwi
Veteran

Joined: 26 Nov 2007
Age: 38
Gender: Female
Posts: 2,444
Location: The murky waters of my mind...
What's the point in fixing a symptom when you aren't doing anything for what's causing that symptom in the first place? Yeah, you might bring some relief for the time being, and make the symptom go away, but it's just going to crop up again later as you've not done anything to treat the cause (as what is a symptom but a sign from your body to tell you something's amiss?). Ergo flaw. And I'm not using the word 'fatal' in an overblown way either - medical mistakes and medicine are the leading cause of death in the US, that's hardly something to joke about!
I'm starting to see the problem here though. I think what's happening is that - as a journalist, which is chiefly what I am when I'm not studying - I've supressed the autistic, literal side of me that would have onced used words with far more precision. So when I write I tend to write for a wide audience (and generally a fairly young one) and use words more freely than I would otherwise; things like 'fatal' and 'cure' can take on less precise and accurate meanings and I end up swapping them for more imprecise and implied ones. Then when I bring that same writing onto a board of austics/aspergians, I forget that for once I can be a little more precise without being taken as sounding clumsy or stilted, as I would do normally (my editor's words, not mine!). Which is both refreshing and frustrating at the same time, but something I need to revert back to momentarily, which may take some time and I may slip on every now and then. If that all makes sense. As such, I apologise if my usage of certain words related to this has caused any confusion - looking back, I think DW_a_mum has got it right; people have been missing the many implied meanings in my posts and as such misread and misinterpreted what I've been trying to say. I'll try to be more accurate from now on so as not to be misread and misinterpreted!!
_________________
We are a fever, we are a fever, we ain't born typical...
I've read parents who feel that chelation "cured" their children, or that diet changes "cured" their child. Of course, the essential brain wiring was not changed. But the changes were dramatic enough for the parent to feel that the afflication they couldn't live with was gone and, thus, "cured" (it is up for debate if the treatment they believe brought it about really is what created the benefit, of course - separate issue). Not everyone uses the term with the same precision. Once identified, assuming they can be identified, all potential environmental aggrevations will be on the table to be "cured," ie removed, to leave you just with the child you were supposed to have. Who may still be autistic, but has been "cured" of what didn't need to be there.
Yes, many are looking to identify the genes with the goal of being able to abort. I've been around the block enough to know that many well-meaning people will feel that "it isn't fair" to bring a child into this world who is "bound to suffer," or will feel that "I wish I could handle it, but I know I won't be able to." That is the only reason I can see to search for a prenatal test specifically, and I am morally opposed to it.
But the term "cure" is broader than prenatal testing, in the reality of how it is used. The NT world is not as concerned with precision as most Aspies are; it is concerned with the general sense behind terminology. Cure is a positive word, succint, with strong implications, so they use it, even when they really mean "remove various related conditions that make life miserable." That many ALSO use the word "cure" to refer to prenatal testing, which you and I agree will lead to eugenics, does not mean that the former do not exist. They DO, and they are probably the majority. You are applying a standard to the term that not everyone who uses it ascribes to. You need to allow for that, regardless of the fact that when looked at precisely you are right. The intent in how a term used, the concept that the speaker hopes to convey, is every bit as important to conversation as precise meaning.
DW, as I attempted to explain previously, it isn't that some people are willing to abort a child in the womb. I agree with abortion as a viable choice (not for me, but for someone else), if a doctor says the child is going to be born without a brain and won't take a breath, or that it is already dead in the womb, then abortion is necessary. The problem in this very specific case is that there is no way of knowing whether the gene combination that they might find is going to cause someone to be as high-functioning as I am or someone as low functioning as the AS kids. That is the concern. So, again, I ask the question... if there is nothing you can do until after the baby is born, why are you messing around in the womb?
We are already well aware of how to fix symptoms. Many ASDs suffer from ciliacs disease. But, ciliac's disease is JUST as prevalent in the non-ASD society as it is amongs ADS. There is no cure for it, but it is commonly known that putting a ciliac on the GfCf diet will alleviate their symptoms. That is a treatment for ciliac and has NOTHING to do with the ASD.
Many ASDs suffer from dyslexia, but there are methods and treatments that the ASD can follow that will allow them to be able to communicate in writing. For other ASDs who lack motor skills to type, there are methods that can be personally adapted so that they can do so; head gear, vocal transmitters, eye movement, etc.
Those are all TREATMENTS; not cures.
The point is that regardless of how much treatment you do, regardless of how many tools you give to the ASD, regardless of how effective everything is in alleviating the symptoms, the underlying genetic situation remains. Why, because (here we come full circle) it's genetic.
So how does one deal with genetics? We alter the genes or we treat the symptoms. You can't make someone with blue eyes have brown eyes UNLESS you mess with the chromosomes that say you will have blue eyes OR unless you put in contacts that change your eye colour. The contacts are just alleviating the problem of blue eyes, as you can see they do not change the fact that the eyes are blue.
So why does anyone care about this?
Well, I care because I have two children and four step children and some of those children (two of them are childbearing age), if not all of them, will have children. And at least two of my children by nature of being my children carry the genes that working together cause autism, so, regardless of the fact that neither of my children really exhibit any symptoms of ASD, by virtue of those genes, they would test positive. As would you, and any of your descendants' (unless of course the genes came from your child's father's side).
That is where the scary slippery slope that we speak about needs to be addressed, mostly because it's a logical conclusion as opposed to a real slippery slope: Your descendants and mine regardless of how afflicted the born child might be would test positive and having been educated through fear about autism, over 90% of parents might choose to abort. Effectively destroying such geniuses as Cronenberg (who I just found out was autistic), Bill Gates, etc.
Yes, parents would be alleviated of ever having to deal with the horrific displays that AS induces in their videos, BUT, the superlative qualities that ASDs bring to life would cease to exist.
Have you seen Amanda's video? This is a girl who with a little training is very capable of creating some film masterpieces (I think). She has a very good sense of how to put together a documentary.
You don't know this, but in my own little world, I am making some very important changes, that were I not to exist, wouldn't happen, and that would be a catastrophe.
See, if someone could say to me, autism is a death sentence or, these specific genes in this specific combination are how we get specific levels of autism, then perhaps maybe I might be convinceable that a "cure" is possible, but even then, it would still require eugenics.
Let me go back to eugenics for a second, because I didn't really understand this concept until someone HERE explained it to me a couple of days ago.
Let's say we know that these specific 46 genes are the ones that are implicated in ASD (I think it's actually only 42 so far, but bear with me)... We know that this pair of chromosomes will make eyes blue, and we know that that pair of chromosomes will dictate how many arms a child has, but we do not know what genes nor what combination of genes will cause any of the symptoms that all go together to make up ASD. Maybe a child with blue eyes blond hair and ciliacs disease is a key, but which genes on, which genes off? We don't know. What if it is a combination of 22, but any 22 of the 46, we still don't know and until we know, then testing in the womb has no more validity then testing on a born child. So, why be there at all? Because someone wants to prevent themselves ever being in the position of the parent of a child such as Tracy Latimer.
Yes, do research. Yes, find out why this happens to people, and how it happens to people, but getting into the womb when there is absolutely only two reasons to be there is just plain wrong.
AS is trying to play G-d and anyone who doesn't make the separation between the words "treatment" and "cure" is either ignoring the facts or not understanding... So, we help them understand or we try to. And if they wish to believe that we're being "huffy" or flaming them for their obtuseness, then sobeit. For some of us, it is really important.
And you know what? Maybe LeKiwi or BeachDude will never get it, because they just don't want to, but maybe, just maybe, someone else will, and if I have to come across as huffy to someone to make that point, then huffy I shall be.
As a high functioning aspie, my biggest problem to date has been dealing with the concept that "The NT world is not as concerned with precision as most Aspies are.". There a lot of us here. We have been misunderstood and ignored for as long as we exist. From where we sit, NTs (read Autism Speaks) want to eradicate us. They want everyone and anyone to see only the worst of autism and you know what? For those of us who actually have the ASD, this doesn't sit well with us. The NT world isn't concerned with us, so we have to be. And, ultimately who better than a group of auties and aspies to say: HEY! There is nothing broken... What do you think you can cure?
Thanks for keeping an open mind.
I have not gone around on this question. I don't see a point to messing around in the womb, and never said I did. I haven't discussed that item at all. I don't like the implications of what pre-natal testing means. I've said so much and, for me, it ends there. Although, I realize, that most people haven't reached that simple or succint a conclusion about it, and haven't thought beyound, "yes, I'd like a prenatal test," without realizing there really isn't anything you can do with that information besides deside to terminate. I have never suggested messing around in the womb. I don't normally address you on this, because it hasn't been one of my discussion points.
Many ASDs suffer from dyslexia, but there are methods and treatments that the ASD can follow that will allow them to be able to communicate in writing. For other ASDs who lack motor skills to type, there are methods that can be personally adapted so that they can do so; head gear, vocal transmitters, eye movement, etc.
Those are all TREATMENTS; not cures.
Again, despite the fact that you and I know this, the world is not using the language that precisely. You are trying to hold the world to a standard of terminology that the world does not use. You will continue to go around in circles in these discussions if you can't let go of that precision. I know exactly what you are saying, and I have no argument with it all, but my point is that this is NOT how others are using the term, and you are not going to change that by arguing it on this board. Those who come here either know how Aspies think, or are learning to, but the rest of the world does not. Society is not this literal.
While you and I have done enough study to be convinced it is genetic, this is far from true in the broader community. You must accept that parents who belong to Autism Speaks, for example, do not all buy into this. It doesn't matter that you are correct. What matters is that you cannot ascribe a knowledge base and set of facts that you hold and believe to be true to others. They have equal right to believe differently. By all means, work on educating them, but you don't need to educate me. I agree with you.
So why does anyone care about this?
Well, I care because I have two children and four step children and some of those children (two of them are childbearing age), if not all of them, will have children. And at least two of my children by nature of being my children carry the genes that working together cause autism, so, regardless of the fact that neither of my children really exhibit any symptoms of ASD, by virtue of those genes, they would test positive. As would you, and any of your descendants' (unless of course the genes came from your child's father's side).
That is where the scary slippery slope that we speak about needs to be addressed, mostly because it's a logical conclusion as opposed to a real slippery slope: Your descendants and mine regardless of how afflicted the born child might be would test positive and having been educated through fear about autism, over 90% of parents might choose to abort. Effectively destroying such geniuses as Cronenberg (who I just found out was autistic), Bill Gates, etc.
Yes, parents would be alleviated of ever having to deal with the horrific displays that AS induces in their videos, BUT, the superlative qualities that ASDs bring to life would cease to exist.
Have you seen Amanda's video? This is a girl who with a little training is very capable of creating some film masterpieces (I think). She has a very good sense of how to put together a documentary.
You don't know this, but in my own little world, I am making some very important changes, that were I not to exist, wouldn't happen, and that would be a catastrophe.
See, if someone could say to me, autism is a death sentence or, these specific genes in this specific combination are how we get specific levels of autism, then perhaps maybe I might be convinceable that a "cure" is possible, but even then, it would still require eugenics.
Let me go back to eugenics for a second, because I didn't really understand this concept until someone HERE explained it to me a couple of days ago.
Let's say we know that these specific 46 genes are the ones that are implicated in ASD (I think it's actually only 42 so far, but bear with me)... We know that this pair of chromosomes will make eyes blue, and we know that that pair of chromosomes will dictate how many arms a child has, but we do not know what genes nor what combination of genes will cause any of the symptoms that all go together to make up ASD. Maybe a child with blue eyes blond hair and ciliacs disease is a key, but which genes on, which genes off? We don't know. What if it is a combination of 22, but any 22 of the 46, we still don't know and until we know, then testing in the womb has no more validity then testing on a born child. So, why be there at all? Because someone wants to prevent themselves ever being in the position of the parent of a child such as Tracy Latimer.
Yes, do research. Yes, find out why this happens to people, and how it happens to people, but getting into the womb when there is absolutely only two reasons to be there is just plain wrong.
AS is trying to play G-d and anyone who doesn't make the separation between the words "treatment" and "cure" is either ignoring the facts or not understanding... So, we help them understand or we try to. And if they wish to believe that we're being "huffy" or flaming them for their obtuseness, then sobeit. For some of us, it is really important.
And you know what? Maybe LeKiwi or BeachDude will never get it, because they just don't want to, but maybe, just maybe, someone else will, and if I have to come across as huffy to someone to make that point, then huffy I shall be.
As a high functioning aspie, my biggest problem to date has been dealing with the concept that "The NT world is not as concerned with precision as most Aspies are.". There a lot of us here. We have been misunderstood and ignored for as long as we exist. From where we sit, NTs (read Autism Speaks) want to eradicate us. They want everyone and anyone to see only the worst of autism and you know what? For those of us who actually have the ASD, this doesn't sit well with us. The NT world isn't concerned with us, so we have to be. And, ultimately who better than a group of auties and aspies to say: HEY! There is nothing broken... What do you think you can cure?
Thanks for keeping an open mind.
While I see the same problem that you see, you again cannot assume that someone who does not have the same underlying beliefs as you has these motives. For the many parents who are not convinced it is all genetic, it is perfectly reasonable to seek a "cure" for a condition many of them with severely affected children rightly believe has taken away that child's ability to ever live independently. Trying to explain to such a parent that what they believe will lead to eugencis is unecessarilly inflamatory and ultimately completely counterproductive. It is not within human nature to be able to absorb such an argument.
You are missunderstood, yes, but you make it worse by refusing to give any credibility to the way the NT world thinks, and continuing to insist that the NT world must view it precisely as you do. When you attack too broadly, you lose the battle. If you attack the prenatal test specifically, instead of the idea of a "cure," you will find much more positive response. The world of Autism Speaks, I do not believe, has yet reached the conclusion that a cure means eugenics. You have to allow them to process through that in their own way, to reach the conclusion you have as they need to. You are not going to succeed in cramming it down their throats the way you wish to. People simply do not respond well to that. It doesn't matter if you are right. They won't accept the information because of the way in which it was delivered. You can argue on this board until your fingers are cramped, but it won't change anything, because they are not reading here. You cannot "win" if you do not understand how they think. It is not how I think, but I DO understand how THEY think, and that is what I am trying to convey. I care every bit as much as you do, but there is nothing that can be acheived by being frustrated, being absolutely correct, and yet completely ineffective in being heard.
However. I think you can and should remind people interested in a prenatal test that it will NOT let them know if they would have a non-verbal autistic, or the next Bill Gates. I don't think people realize that, and they absolutely need to.
I totally sympathize with your frustration, I see it regularly in my son, but he is learning to let go of that, learning to accept that he needs to speak to others at that level, and in doing so he is discovering that he has a lot more power. And regardless of the fact that he would rather not have to adapt to them, he is really enjoying that power. He has discovered that the cost of adapting can be more than worth it, as far as his own goals go (being only 10, it's mostly about getting them to play the games he is constantly inventing). From the things I've read by Alex, I can tell that he "gets" it. It is why he is being as successful as he is. Ultimately, it comes down to what you want most: to be allowed to be who you are, or to have influence on, for example, the people at Autism Speaks. One person, one decision. The short term trade off by a few people may lead to a future where other Aspies do not have to make that choice, but can be understood as they are. But you can't force that future to be today simply because it would the right and fair thing to have. You will have to work the system if you want to be heard.
I have work deadlines coming up, and I need to try to be good and stay away from this board. Pepperfire, I hope you will think about what I am saying, instead of tugging against it and trying to pull everything into the way you know is right. You have a lot of knowledge and an amazing spirit. It would be great to see you able to use that more effectively. It could be very powerful. But, I believe, you will have to absorb what I am TRYING to say first (whether or not I have said completely properly is still an open question, of course).
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Mom to an amazing young adult AS son, plus an also amazing non-AS daughter. Most likely part of the "Broader Autism Phenotype" (some traits).
I'm starting to see the problem here though. I think what's happening is that - as a journalist, which is chiefly what I am when I'm not studying - I've supressed the autistic, literal side of me that would have onced used words with far more precision. So when I write I tend to write for a wide audience (and generally a fairly young one) and use words more freely than I would otherwise; things like 'fatal' and 'cure' can take on less precise and accurate meanings and I end up swapping them for more imprecise and implied ones. Then when I bring that same writing onto a board of austics/aspergians, I forget that for once I can be a little more precise without being taken as sounding clumsy or stilted, as I would do normally (my editor's words, not mine!). Which is both refreshing and frustrating at the same time, but something I need to revert back to momentarily, which may take some time and I may slip on every now and then. If that all makes sense. As such, I apologise if my usage of certain words related to this has caused any confusion - looking back, I think DW_a_mum has got it right; people have been missing the many implied meanings in my posts and as such misread and misinterpreted what I've been trying to say. I'll try to be more accurate from now on so as not to be misread and misinterpreted!!

This is an interesting self-analysis. I was wondering why an Aspie was having trouble with the literal

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Mom to an amazing young adult AS son, plus an also amazing non-AS daughter. Most likely part of the "Broader Autism Phenotype" (some traits).
You let the patient die, when you are not sure whether it's a fish-bone or a tooth-pick he's choking on?
And there you go... a wild theatrical statement like that. How on earth can you justify such an accusation?
The rest of your post... I think you are getting the picture. The following applies to DW_a_mom too.
This is a board predominantly inhabited by aspies. We are abrasive. We are pedants. We insist on precision, This (WP) is OUR board. Here (I think it takes a while to realise) is where we at last can express ourselves with total finickiness, knowing that our audience is the same as ourselves.
We even fall out with one another, on a regular basis. I know I do so, regularly, with the WP member I feel closest to. (Yeah... you know who you are!)
When that happened, the first time, I had to step back and think about it. I decided that I would NOT put on my false, NT-acceptable act. I do that all the time, outside WP. Here, I have decided to be ME, for the first time in my life.
(Gosh... it is a bit chilly here, I suppose, temperature-wise, but does that fully explain why I'm shaking?)
I will try to maintain the act, when outside WP. But in here, I reserve the right to be totally honest, for once.
And, LeKiwi, I do try hard to keep some check on myself. Friends?
_________________
"Striking up conversations with strangers is an autistic person's version of extreme sports." Kamran Nazeer
I have not gone around on this question. I don't see a point to messing around in the womb, and never said I did. I haven't discussed that item at all. I don't like the implications of what pre-natal testing means. I've said so much and, for me, it ends there. Although, I realize, that most people haven't reached that simple or succint a conclusion about it, and haven't thought beyound, "yes, I'd like a prenatal test," without realizing there really isn't anything you can do with that information besides deside to terminate. I have never suggested messing around in the womb. I don't normally address you on this, because it hasn't been one of my discussion points.
Actually, DW, seeking a "prenatal" test, for something you can do nothing about, is akin to promoting eugenics. And no, you haven't gone on this point, but the other poster has and we were discussing why I seem to have a bone in my craw over that conversation.
Many ASDs suffer from dyslexia, but there are methods and treatments that the ASD can follow that will allow them to be able to communicate in writing. For other ASDs who lack motor skills to type, there are methods that can be personally adapted so that they can do so; head gear, vocal transmitters, eye movement, etc.
Those are all TREATMENTS; not cures.
Again, despite the fact that you and I know this, the world is not using the language that precisely. You are trying to hold the world to a standard of terminology that the world does not use. You will continue to go around in circles in these discussions if you can't let go of that precision. I know exactly what you are saying, and I have no argument with it all, but my point is that this is NOT how others are using the term, and you are not going to change that by arguing it on this board. Those who come here either know how Aspies think, or are learning to, but the rest of the world does not. Society is not this literal.
I am trying to hold poster to Wrongplanet to a standard of terminology that members of Wrongplanet use. I am already frighteningly aware of how society is not aware of this terminology, but I am not dealing with society, I am dealing with someone on this board. If Aspies can be held to the NT standard when out there in society, then NTs can be held to the Autie standard while they are in here. And if I need to continue to go around the same circle over and over again in order to help someone posting here to learn that terminology, then I'm altogether willing to do that. At least until the point where that person shows themselves to be uninterested in or uncaring of the facts and is just really obtuse, really stupid or plain and simply a troll. I'm obviously not referring to you here. And whether or not society is that literal becomes a moot argument, because every single aspie and autie I know personally, IS.
While you and I have done enough study to be convinced it is genetic, this is far from true in the broader community. You must accept that parents who belong to Autism Speaks, for example, do not all buy into this. It doesn't matter that you are correct. What matters is that you cannot ascribe a knowledge base and set of facts that you hold and believe to be true to others. They have equal right to believe differently. By all means, work on educating them, but you don't need to educate me. I agree with you.
So why does anyone care about this?
Well, I care because I have two children and four step children and some of those children (two of them are childbearing age), if not all of them, will have children. And at least two of my children by nature of being my children carry the genes that working together cause autism, so, regardless of the fact that neither of my children really exhibit any symptoms of ASD, by virtue of those genes, they would test positive. As would you, and any of your descendants' (unless of course the genes came from your child's father's side).
That is where the scary slippery slope that we speak about needs to be addressed, mostly because it's a logical conclusion as opposed to a real slippery slope: Your descendants and mine regardless of how afflicted the born child might be would test positive and having been educated through fear about autism, over 90% of parents might choose to abort. Effectively destroying such geniuses as Cronenberg (who I just found out was autistic), Bill Gates, etc.
Yes, parents would be alleviated of ever having to deal with the horrific displays that AS induces in their videos, BUT, the superlative qualities that ASDs bring to life would cease to exist.
Have you seen Amanda's video? This is a girl who with a little training is very capable of creating some film masterpieces (I think). She has a very good sense of how to put together a documentary.
You don't know this, but in my own little world, I am making some very important changes, that were I not to exist, wouldn't happen, and that would be a catastrophe.
See, if someone could say to me, autism is a death sentence or, these specific genes in this specific combination are how we get specific levels of autism, then perhaps maybe I might be convinceable that a "cure" is possible, but even then, it would still require eugenics.
Let me go back to eugenics for a second, because I didn't really understand this concept until someone HERE explained it to me a couple of days ago.
Let's say we know that these specific 46 genes are the ones that are implicated in ASD (I think it's actually only 42 so far, but bear with me)... We know that this pair of chromosomes will make eyes blue, and we know that that pair of chromosomes will dictate how many arms a child has, but we do not know what genes nor what combination of genes will cause any of the symptoms that all go together to make up ASD. Maybe a child with blue eyes blond hair and ciliacs disease is a key, but which genes on, which genes off? We don't know. What if it is a combination of 22, but any 22 of the 46, we still don't know and until we know, then testing in the womb has no more validity then testing on a born child. So, why be there at all? Because someone wants to prevent themselves ever being in the position of the parent of a child such as Tracy Latimer.
Yes, do research. Yes, find out why this happens to people, and how it happens to people, but getting into the womb when there is absolutely only two reasons to be there is just plain wrong.
AS is trying to play G-d and anyone who doesn't make the separation between the words "treatment" and "cure" is either ignoring the facts or not understanding... So, we help them understand or we try to. And if they wish to believe that we're being "huffy" or flaming them for their obtuseness, then sobeit. For some of us, it is really important.
And you know what? Maybe LeKiwi or BeachDude will never get it, because they just don't want to, but maybe, just maybe, someone else will, and if I have to come across as huffy to someone to make that point, then huffy I shall be.
As a high functioning aspie, my biggest problem to date has been dealing with the concept that "The NT world is not as concerned with precision as most Aspies are.". There a lot of us here. We have been misunderstood and ignored for as long as we exist. From where we sit, NTs (read Autism Speaks) want to eradicate us. They want everyone and anyone to see only the worst of autism and you know what? For those of us who actually have the ASD, this doesn't sit well with us. The NT world isn't concerned with us, so we have to be. And, ultimately who better than a group of auties and aspies to say: HEY! There is nothing broken... What do you think you can cure?
Thanks for keeping an open mind.
While I see the same problem that you see, you again cannot assume that someone who does not have the same underlying beliefs as you has these motives. For the many parents who are not convinced it is all genetic, it is perfectly reasonable to seek a "cure" for a condition many of them with severely affected children rightly believe has taken away that child's ability to ever live independently.
You are missunderstood, yes, but you make it worse by refusing to give any credibility to the way the NT world thinks, and continuing to insist that the NT world must view it precisely as you do.
Here's where you and I fail to be on the same page. I'm not in an NT world on these boards. Neither are you. I will not be held accountable to the ignorance that NTs suffer from because of Autism Speaks, and I will make a specific point of showing the facts as they exist to anyone who comes in here, why? Because someone has to. Just because people think the world is flat doesn't mean it is.
Maybe I missed something, but I didn't attack anyone.... Well, BeachDude, but he's a troll.
It is stated quite specifically as one of their research goals on their website. This fact was presented earlier in these discussions... by several people, myself included.
I have been told all of my life, you have to be this, you have to be that, you have to behave like this, you can't do that. I am 42 years old, I am no longer a child expected to behave the way that my mother would hope that I behave. I am a grown woman, able to behave as I choose and perfectly willing I might add to accept the consequences of my actions. One of those actions was to join a board where I could connect with other aspies and learn what I don't already know and possibly share what I do know. NTs and what they want doesn't come into it. This isn't an NT world. This is an Aspie world. And if telling someone that using the word "cure" when what they really mean is "treatment" is "cramming something down their throats, then sobeit. The fact, DW, is that if one wants lies and B*llsh*t "crammed" down their throats, they can go to Autism Speaks. Here all they will get is the truth. And even if someone EVER comes in here with facts that show my facts to be erroneous, then bring it on, I really want to hear it. But otherwise the facts is the facts and no matter the delivery, the facts is still the facts.
DW, I think the fact that you are NT may have coloured your concept in this discussion. We are obviously both approaching it from a different position. You live in a world where I'm expected to win NTs over by behaving in such a way as to get them to come to my way of thinking. But the one mitigating factor here is that you are on an Aspie board. Ergo, regardless of what NTs might think, you either come to this way of thinking and understanding or you don't. And the most interesting fact is that they may not be posting here, but don't kid yourself, they are reading.
One thing that my father taught me as a child, and I hope you teach this to your aspie child: If you have a truth that needs to be heard, then keep repeating it over and over until someone listens. He was referring to sexual abuse situations, but as an aspie who is concerned about eradication of my species, I think it's even more important a situation. If that seems emotional to you, then you understand a least a modicum of where I'm coming from.
Some folks like to liken the issue to Hitlerian behaviours, I prefer not to do that usually, because I find it tends to be inflammatory to the point of ad hominem and the second an NT hears the word "Hitler", the NT thinks; "you're calling me a nazi". The neglect to hear the rest of it. In this particular incidence, any Aspie or Autie that is told that using the word "cure" is akin to promoting eugenics, only hears "you're calling me a nazi". If you've got a better way to say it, then say it. Because it doesn't matter how it's said or how delicately it gets explained, it all comes down to the fact that using the word "cure" (ESPECIALLY HERE) is akin to saying they want to eradicate us aspies. And since you're in an aspie haven, I think that it is the NT who needs to be understanding; not the Aspies.
Did that, stated, restated, twisted around to be more comprehensible, and all the other person heard was "you're a nazi", they even accused me of flaming them.

So, tell me, DW, and this is important, (potentially moreso to your son than to you), but, where and when does your son just get to be an Aspie? When can he take the mask off and just stim? When can he sit and echolalia to his heart's content?
You see, I've learned to work the system. You don't know me, but I own my own business (partnered with my husband). I am director of my town businessperson's association, I've been recently asked to run for municipal council (ya right!), I do public speaking, I spend the majority of my life and my time PRETENDING to be an NT. For all intents and purposes, when I tell people I am Aspie, they are blown away, they had no idea. Why? Because I never knew I was Aspie, and I spent nearly 35 years pretending to be NT because I had no idea I wasn't. I spent my entire life feeling weird and out of place and thinking, I'll never be able to do anything right. I'll NEVER be able to just BE me.
So, at the end of the day, I come here, (or in the middle of the day when I'm avoiding work) and I can finally let my stim down, so to speak and be me; and lo and behold, there are other people in here who like me for being weird, because they, although different are the same as me. Wrongplanet.net is the ONLY resource and community for those WITH Asperger's Syndrome. It isn't here for NTs. So my asking NTs for a change to be accountable to the facts about Asperger's while they are in here, is absolutely called for. They're in MY world now.
Let me tell you a story about NTs from your son's point of view...
I was 17. I got my hair cut, really cool, by a professional hair dresser as part of a modelling job I was on. I thought it was amazing. It really suited my weirdness. I felt great about myself, I really felt good for a change. This was in the early 80's when rat-tails were in vogue... remember those???
My NT sister and her friends held me down and cut my hair. The cut off my beautiful weird aspie hair and I can never forgive them for that. And it pains me to this day. So if you feel my emotion, it's because I'm emotional about it.
Welcome to the Aspie world, where using "cure" means you wish to eradicate us.
Pepperfire, I guess that I don't feel I can assume that what you say here is any different than what you would say elsewhere. So, I have not. I agree with your right to be as you wish here, but you are not going to convince me that that includes taking someone who means something different by the term "cure," and accusing them of meaning eugenics. It takes far to much to get from A to Z. I do not find it fair. But, heck, if that is the way the vast majority of Apsies here feel it should be, well, you are right: when I'm here, I'm in your world. I may argue my case, and then I have to let it be. So .... I feel I have argued my case. End.
Home is the free spot for my son. I agree, it is ESSENTIAL for an Aspie to have a free place. I posted this in a list on the parent's forum recently. But it is also my job to help my son acheive what he wants in life, and it is in those contexts that we talk.
Not that I, myself, am completely without Aspie traits. Maybe I have 5 of those 46 genes. Or 20. Who knows. I actually think in that sense it would be interesting to find out what the genes and potential combinations mean, to know how my mostly Aspie husband and my mostly NT self came together to create this amazing child who happens to have been diagnosed with a condition called Aspergers. Just for the sake of knowledge. It is too bad that knowledge can also have so many downsides.
_________________
Mom to an amazing young adult AS son, plus an also amazing non-AS daughter. Most likely part of the "Broader Autism Phenotype" (some traits).
Home is the free spot for my son. I agree, it is ESSENTIAL for an Aspie to have a free place. I posted this in a list on the parent's forum recently. But it is also my job to help my son acheive what he wants in life, and it is in those contexts that we talk.
Not that I, myself, am completely without Aspie traits. Maybe I have 5 of those 46 genes. Or 20. Who knows. I actually think in that sense it would be interesting to find out what the genes and potential combinations mean, to know how my mostly Aspie husband and my mostly NT self came together to create this amazing child who happens to have been diagnosed with a condition called Aspergers. Just for the sake of knowledge. It is too bad that knowledge can also have so many downsides.
What I say here, is what I say everywhere. That's not the same for all Auties. A lot of them can't even verbalize. I am blessed in that sense.
The problem with us aspies and auties is that you see it ALL as downsides if you think it needs to be cured. If you want your son to achieve what he wants to be in life, teach him to be the best that he can be REGARDLESS of what the NTs have to say about it.
One can't possibly ask for more than to simply be appreciated and loved for who and what we are out there in the real world and not just here in our own safe comforting little place. Why would I say anything different out there than I do in here? The difference? I expect, and get, a lot less ignorance in here.
And it's really a pity that you can't see that your son doesn't have to change to succeed, he just has to learn what he's good at and optimize those things. If those of us who do have a voice could manage to spend the money that gets thrown at Autism Speaks, maybe, just maybe, one day we'd see the same human rights as the rest of society.
If you hear "you're a nazi" because I tell you that the word "cure" means eradication to an aspie, then there is nothing I can do to get you to listen and understand, DW.
You, like LeKiwi and BeachDude the troll, all want us to be "normal" and you fail to comprehend that for us; this is normal -- as normal as having blue eyes, as normal as having a receding hairline, as NORMAL as we can possibly be given our genes. So why is it so all-fired important that you change us? Why can't I fidget with my bracelet? Because it distracts you? Hell, DW, it helps me concentrate. Why can't I swing my foot? Because it distracts you? Hell, DW, it helps me concentrate.
The second we start accepting and appreciating people for who they are and what they are, the fewer Aspies who will grow up feeling "weird" or "different" or worse ostracized and outcast; which is where we have all been. Have you ever been THERE? DW? Your son will be and often.
To steal the phrase from the Elephant Man as seems to be fairly common from us freaks: we are not animals. There is nothing wrong with us, we are not broken. Our state is our state and no matter how much you would like us to be like you, WE NEVER WILL BE.
Learn to love us and appreciate us for who we are as we are. Otherwise you're only hurting us.
Do whatever you want with the info DW. You came to find out how to help your son? Listen to the people who are LIKE your son rather than argue with us, accept OUR truths as your son's. For they are and they will be his. Own it for what it is.
Have a nice day. I really sincerely mean that, but this topic with you, is obviously done. I hope you got something out of it.
LeKiwi
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Pepperfire, did you read my last post at all? I suggest you go back and re-read. Also, I'll say again, I have no idea about this Autism Speaks group as I'm not in the US, have never been to the US, and have never come across them or anything to with them, except for on these boards. So they don't even come into my sphere of thinking.
I'll also remind you that I'm not an NT - I may write like one, as I've been trained to do as a journalist, but the fact remains I'm about as Aspergian as anyone else here. I was diagnosed at 14, I had a tough time through school, I'm having a tough time now, I probably always will. But you know what? I don't really mind anymore. I take all the gifts that come with AS - as I do believe they are gifts - and use them to succeed in this NT world. I don't mind that I have to be at home to truly be myself and to listen to the same thing 100 times or watch the same segment of a film 100 times or rock for a while or indulge my obsession or whatever. The rest of the world - the 'NTs' as they're termed - wouldn't understand why I need to do that. And why should I expect them to? They aren't me, we're 'wired differently', we function differently, and they don't understand it, but that doesn't mean we can't get along just fine. Most of my closest friends are 'NT', my partner is 'NT', most of my family are 'NT', my colleagues are all 'NT'... doesn't mean we can't communicate on the same level. It just requires a bit of give and take is all. So when we're out and I get overwhelmed and need to escape so run out and sit under a tree down the road for a while they don't mind; they may not understand why I need to do that, but at least they understand that it's just me and what I have to do. Same as I may not understand half the things they do, but at least I understand that it's just them and the way they go about things. So I'm sorry if you find it so frustrating that this is the way things are, but it is and we just have to accept that - we may not understand each other properly, but we can at least understand that that's how we are and get along ok. It sounds like you're doing very well for yourself and I applaud you for that, but you need to remember we all work differently to get by with our different perceptions.
So again, you'll have to excuse my using less precise wording that I perhaps could do on these boards. I've been writing for the past decade for an NT world - a young NT world; 14-25 year olds - and as such I've been trained out of using the picky wording I once did in favour of terminology on their level. As such you have to understand that I may be Aspergers myself, but the writing I produce, although I'm a professional writer, is not going to have the precise wording you might expect. I will try and use the pedantic phrasing I once did, but it's a long time driven from me and it may not be so easy to change. Until such time as it is, you're just going to have to excuse it and remember that my use of the word 'cure' could well be interchangeable with 'treatment' - the words themselves have different meanings and lead to different things, yes, but for an NT world of readers they won't mind the use of the word so much as its context. I spend eight hours a day writing for this audience; it's not easy to suddenly revert back to my 'native' way of writing and using language.
Again, I don't believe in eugenics, and I don't believe there would ever be a way of finding a way to go about that in the womb for the reasons you said - carriers of genes who may not display the actual syndrome, too wide an array of genes, etc etc. I agree. And the only reason I agree with abortion is as a choice for a woman who doesn't feel she can raise a child at that point, or for health reasons, etc etc - the standard abortion reasoning. Not because of what that unborn child is or may become (although in some cases where there is a severe disability or 'defect' I can understand why women do it... not always condone; but understand). My approval of people who want to look for a cure to go looking for one does not mean I approve of eugenics. Perhaps that's just the optimist in me, but I don't think people are THAT callous and cruel yet. They may not understand us, but they do understand that we aren't defective. There'll always be an ignorant minority, but that's what they are - a minority. I don't know if they'll ever find that 'cure' or 'treatment', but why shouldn't they go searching for one? It's a free country and they may turn up some interesting surprises along the way. As long as the aspie or autie isn't shoved aside in the process and remains the priority, then that's fine. Again, perhaps I am just overly optimistic, but I don't see how it has to lead to eugenics.
Also, remember again, I don't know anything about Autism Speaks or their policies or influence because I'm not in the US and haven't ever come across them. So none of their stuff you're all talking about on here makes any sense to me at all.
I don't want you to be 'normal', just to understand that we're all different. I don't want to change you at all - why would I? You and I are both on the same spectrum and probably both functioning at a similar level on it, but that doesn't mean we're the same. But I'll tell you what, I can fidget and leg-swing with the best of them; I don't think I've stopped doing so since the day I arrived in this big wide world. All I'm asking for is that you try and understand where I'm coming from, the same way you're asking me to understand your perspective. Acceptance is key.
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We are a fever, we are a fever, we ain't born typical...
Last edited by LeKiwi on 18 Mar 2008, 5:55 pm, edited 1 time in total.
LeKiwi
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Joined: 26 Nov 2007
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Location: The murky waters of my mind...
You let the patient die, when you are not sure whether it's a fish-bone or a tooth-pick he's choking on?
And there you go... a wild theatrical statement like that. How on earth can you justify such an accusation?
The rest of your post... I think you are getting the picture. The following applies to DW_a_mom too.
This is a board predominantly inhabited by aspies. We are abrasive. We are pedants. We insist on precision, This (WP) is OUR board. Here (I think it takes a while to realise) is where we at last can express ourselves with total finickiness, knowing that our audience is the same as ourselves.
We even fall out with one another, on a regular basis. I know I do so, regularly, with the WP member I feel closest to. (Yeah... you know who you are!)
When that happened, the first time, I had to step back and think about it. I decided that I would NOT put on my false, NT-acceptable act. I do that all the time, outside WP. Here, I have decided to be ME, for the first time in my life.
(Gosh... it is a bit chilly here, I suppose, temperature-wise, but does that fully explain why I'm shaking?)
I will try to maintain the act, when outside WP. But in here, I reserve the right to be totally honest, for once.
And, LeKiwi, I do try hard to keep some check on myself. Friends?
Friends.

It's actually nice to know I can use my more 'native' language as such on here... just a little daunting at the same time. For so long I've had it drilled into me that to do so will be stilted and won't read well - you can only imagine what 'stilted' and 'doesnt read well' would mean for a journalist who makes a living from her writing!! So again, just bear with me... and I apologise for not explaining this a bit sooner; it's not something I'd actually thought about. If what I'm saying sounds far-fetched and obtuse, and like I am promoting naziesque ethics or something, please just look for the context and the potential implied meaning as you would when reading an NT's work, and you'll probably be on the right track. I may not be NT myself, but I can certainly write like one and act like one. I guess the joy of these boards and of being oneself isn't something I'd fully grasped until this point. So thank you for helping me reach that point!!
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LeKiwi
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I'm ON that spectrum, I'll remind you, and so are a lot of my family...
And like most cultures there are always those who are rogue elements....like you.
The culture is a lot wider than just this board, you know!!
LeKiwi
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Joined: 26 Nov 2007
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Posts: 2,444
Location: The murky waters of my mind...
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