Banned from WP

[DukeNukem]

Sorry to break it to ya, folks, but that's not how grant money works. You make a proposal as to how the money will be allocated, the organization either awards you a grant or doesn't. If you get the grant, you spend it as you'd originally proposed. That's as far as the selling of souls go.

If you want to do some good in this world, generally you need money in order to do so. I can't do my research without funding, and sadly there aren't enough rich philanthropists in the world knocking at my door. You've gotta go to SOME organization to apply for money. I'll also be applying to the NIH. But since my CV is mostly made up of autism-based research, Autism Speaks is the more likely of the predoc fellowships I could attain.

I'm the one who decides what goes into my application, what my dissertation will be, etc., not Autism Speaks. They either accept it or reject it. If they accept it, I get their money to support the work.

I'm not talking about Alex here, but for myself I know that research has shown me that the philosophical debates that the autism fora are rife with are really far too black and white to be anything but a "moral highground" from which to fall off of.

Life is more real than these fora, I'm sorry. Although I'm not trying to debase the communities that have been built online and which are substantially important; they've been my bedrock through a number of hard times. But when it comes to research and business, there are a lot of compromises. I didn't make the game, but that's how it's played if you wish to achieve your goals. My goals are to come to a better understanding of what makes up autism(s) and how, genetically and environmentally, it develops. It's not to eradicate, it's to explain.

What I have a problem with is the ND and parental communities who are CONSTANTLY at war with each other and are too damned blind to see that, in essence, they're really fighting for the SAME DAMNED THING. They just don't happen to agree on how to go about achieving it. So rather than try to cooperate and listen, they're at each others' throats making worse problems than either had before.

So Alex got some money. He's got it from Autism Speaks. He's gonna make some little films about the Spectrum that I'm sure Wrongplanet will watch and probably enjoy. Autism Speaks no doubt had a certain portion of funding that was allocated to go to the community or some such. Alex and Cubby applied for money, John helped them get it. Nepotism, yeah. But that's about it.

Choose your battles. Energy is better spent doing things than bickering. Nobody will change their minds anyways.

Sophist: make damn sure that when you get the grant that you spend it exactly how you want it. If your application is based on what YOUR words are, then it should be up to YOU to do with the money what you see fit, even if they are the ones granting it. If they put strings on how it is meant to be spent, then they are not worth approaching. Given the moral arguments and so forth, they should not have the right to be able to tell you what to do once the grant is given. NIH would be a better alternative, but if it has to be Autism Speaks, then make sure the deal is going to benefit you much more than it will them.

Besides, Alex (as far as we know) would have gotten his announcement spread over a far wider audience had he used a good quality camera and put it on youtube. Even professionally he could have gotten it done far cheaper. But what is really funny about the whole situation is this: why didn't he hit his rich dad up for the dough? The Planks must have a fair bit behind them, why did he need to go to a third party, especially one with a reputation like Autism Speaks?

Once they've handed over the money, it's yours. But they do ask for verification from time to time to guarantee the money is being spent as you said it would. Grants do not normally offer too much wiggle room.

Sure Sophist. OK mate. If that is what gets you through life. Moral ambivalence and justification.
Hell you are nice enough and smart and will no doubt do well in life. Perhaps more so without such intruding ethical or moral stumbling blocks to negotiate.

For the years I've been a part of the online autie community, research hasn't changed me; it hasn't made me compromise. What has changed me? Seeing my ex's 2 year-old grandson who is completely debilitated by his condition, by seizures which are part and parcel of his autism to the point he can't even crawl yet. He's a gorgeous boy, but I would do everything in my power to help him to walk and talk. Christ, to even be AWARE half the time of his environment because he's so lost in his epilepsy.

It's not about eradicating autism and, frankly, that'll never happen. Even prenatal tests would be a load of bollocks because autism is so heterogenetic and likely also involves various environmental factors that you wouldn't be able to tell an autistic from a nonautistic that I don't believe many parents would be taking that risk. And thus far, there is no definitive biomarker to test for it in utero.

I don't want to eradicate anything. I want to celebrate many of the incredible things that can come from an autistic perspective. And believe me, that is a bedrock of my outlook. But I also want to figure out what makes autism tick, and hopefully in doing so I can help people improve their lives.

For instance, let's play Devil's Advocate. It doesn't need to be true, but pretend it is. Let's say that autism is highly genetic, but in order for more severe forms of the conditions to occur, the fetus needs to be exposed to certain environmental agents. Forget the vaccines, let's just say for shits and giggles that exposure to phytoestrogens such as those which come in many canned foods are necessary to turn what would have been an odd yet functional aspie into a severely disabled autistic. The ND movement says that autism is beautiful as it is and we can't play God. But you're a scientist and you find out that if the mother is consistently exposed to these phytoestrogens through her food, that her baby has a 30 times likely chance of developing a moderate to severe form of autism. What do you do? Do you say to yourself, "Well, I shouldn't do anything because autism is beautiful and it's meant to be how it is"? My point is, so MUCH of what the ND movement bases their ideas of "beauty" on are under the misguided notion that autism is completely genetic and therefore "predestined", which any scientist in the field will tell you is fiction.

Autism is not 100% genetic. You don't "inherit" it. You inherit a tendency towards developing it. The severity varies within a given family, from eccentric Broader Phenotype to maybe even a downright severe case or two. Environment plays an important role in this.

For the same reason that Temple Grandin loves cows and works hard to design the more humane cattle shutes that lead them to their deaths, I work to understand the Spectrum. Not because I'm helping lead us to our dooms but because research is GOING to be done, and it's better that it's in the hands of people who understand and value the contributions autistic people make rather than those who just wish to see the "disorder" wiped off the face of the earth.

And if any of you take issue with that and have the misguided nerve to call me immoral and soul-less for trying to do good work, help people, and listen to all sides, then you are the embodiment of what is wrong with the ND movement in the first place.

Seems pretty reasonable, actually. But still, Autism Speaks's goal, seems like, is to eradicate ALL of the Autism Spectrum, not just to see how Autism even ticks or attempt to alleviate the severe symptoms. I thought neurodiversity was about accepting others for who they are, not to just let them suffer. Still a better movement than the anti-neurodiversity movement, because the autistic adults and the parents of autistic children need actual support and positivity, not fallacies and negative propaganda.

I mean, who would you rather listen to? Someone who is offering genuine help and advice for you and/or your children? Or someone who only wants your money (or for you to waste it on expensive so-called treatments which can range somewhere from annoying to inhumane) and always speak of autism in a negative way?

What really kills me is why are some people so damned against even the rather benign traits of others. So much unjustified hatred does nothing for this world.

[Callaway]

Sorry to break it to ya, folks, but that's not how grant money works. You make a proposal as to how the money will be allocated, the organization either awards you a grant or doesn't. If you get the grant, you spend it as you'd originally proposed. That's as far as the selling of souls go.

If you want to do some good in this world, generally you need money in order to do so. I can't do my research without funding, and sadly there aren't enough rich philanthropists in the world knocking at my door. You've gotta go to SOME organization to apply for money. I'll also be applying to the NIH. But since my CV is mostly made up of autism-based research, Autism Speaks is the more likely of the predoc fellowships I could attain.

I'm the one who decides what goes into my application, what my dissertation will be, etc., not Autism Speaks. They either accept it or reject it. If they accept it, I get their money to support the work.

I'm not talking about Alex here, but for myself I know that research has shown me that the philosophical debates that the autism fora are rife with are really far too black and white to be anything but a "moral highground" from which to fall off of.

Life is more real than these fora, I'm sorry. Although I'm not trying to debase the communities that have been built online and which are substantially important; they've been my bedrock through a number of hard times. But when it comes to research and business, there are a lot of compromises. I didn't make the game, but that's how it's played if you wish to achieve your goals. My goals are to come to a better understanding of what makes up autism(s) and how, genetically and environmentally, it develops. It's not to eradicate, it's to explain.

What I have a problem with is the ND and parental communities who are CONSTANTLY at war with each other and are too damned blind to see that, in essence, they're really fighting for the SAME DAMNED THING. They just don't happen to agree on how to go about achieving it. So rather than try to cooperate and listen, they're at each others' throats making worse problems than either had before.

So Alex got some money. He's got it from Autism Speaks. He's gonna make some little films about the Spectrum that I'm sure Wrongplanet will watch and probably enjoy. Autism Speaks no doubt had a certain portion of funding that was allocated to go to the community or some such. Alex and Cubby applied for money, John helped them get it. Nepotism, yeah. But that's about it.

Choose your battles. Energy is better spent doing things than bickering. Nobody will change their minds anyways.

Sophist: make damn sure that when you get the grant that you spend it exactly how you want it. If your application is based on what YOUR words are, then it should be up to YOU to do with the money what you see fit, even if they are the ones granting it. If they put strings on how it is meant to be spent, then they are not worth approaching. Given the moral arguments and so forth, they should not have the right to be able to tell you what to do once the grant is given. NIH would be a better alternative, but if it has to be Autism Speaks, then make sure the deal is going to benefit you much more than it will them.

Besides, Alex (as far as we know) would have gotten his announcement spread over a far wider audience had he used a good quality camera and put it on youtube. Even professionally he could have gotten it done far cheaper. But what is really funny about the whole situation is this: why didn't he hit his rich dad up for the dough? The Planks must have a fair bit behind them, why did he need to go to a third party, especially one with a reputation like Autism Speaks?

Once they've handed over the money, it's yours. But they do ask for verification from time to time to guarantee the money is being spent as you said it would. Grants do not normally offer too much wiggle room.

Sure Sophist. OK mate. If that is what gets you through life. Moral ambivalence and justification.
Hell you are nice enough and smart and will no doubt do well in life. Perhaps more so without such intruding ethical or moral stumbling blocks to negotiate.

For the years I've been a part of the online autie community, research hasn't changed me; it hasn't made me compromise. What has changed me? Seeing my ex's 2 year-old grandson who is completely debilitated by his condition, by seizures which are part and parcel of his autism to the point he can't even crawl yet. He's a gorgeous boy, but I would do everything in my power to help him to walk and talk. Christ, to even be AWARE half the time of his environment because he's so lost in his epilepsy.

It's not about eradicating autism and, frankly, that'll never happen. Even prenatal tests would be a load of bollocks because autism is so heterogenetic and likely also involves various environmental factors that you wouldn't be able to tell an autistic from a nonautistic that I don't believe many parents would be taking that risk. And thus far, there is no definitive biomarker to test for it in utero.

I don't want to eradicate anything. I want to celebrate many of the incredible things that can come from an autistic perspective. And believe me, that is a bedrock of my outlook. But I also want to figure out what makes autism tick, and hopefully in doing so I can help people improve their lives.

For instance, let's play Devil's Advocate. It doesn't need to be true, but pretend it is. Let's say that autism is highly genetic, but in order for more severe forms of the conditions to occur, the fetus needs to be exposed to certain environmental agents. Forget the vaccines, let's just say for shits and giggles that exposure to phytoestrogens such as those which come in many canned foods are necessary to turn what would have been an odd yet functional aspie into a severely disabled autistic. The ND movement says that autism is beautiful as it is and we can't play God. But you're a scientist and you find out that if the mother is consistently exposed to these phytoestrogens through her food, that her baby has a 30 times likely chance of developing a moderate to severe form of autism. What do you do? Do you say to yourself, "Well, I shouldn't do anything because autism is beautiful and it's meant to be how it is"? My point is, so MUCH of what the ND movement bases their ideas of "beauty" on are under the misguided notion that autism is completely genetic and therefore "predestined", which any scientist in the field will tell you is fiction.

Autism is not 100% genetic. You don't "inherit" it. You inherit a tendency towards developing it. The severity varies within a given family, from eccentric Broader Phenotype to maybe even a downright severe case or two. Environment plays an important role in this.

For the same reason that Temple Grandin loves cows and works hard to design the more humane cattle shutes that lead them to their deaths, I work to understand the Spectrum. Not because I'm helping lead us to our dooms but because research is GOING to be done, and it's better that it's in the hands of people who understand and value the contributions autistic people make rather than those who just wish to see the "disorder" wiped off the face of the earth.

And if any of you take issue with that and have the misguided nerve to call me immoral and soul-less for trying to do good work, help people, and listen to all sides, then you are the embodiment of what is wrong with the ND movement in the first place.

I hope they give you millions of dollars for your research, not only because I think you will put it to good use to help people but also because every dollar they give you is a dollar that isn't going to make their commercials that make it look like having a child with autism is a fate worse than death.

[Callaway]

Personally, I don't see why you still bother with WP Fiona.

Its human nature.

People are drawn to what cause controversy (sp?). And tbh I would feel like I need a restraint to not critisise some of the posts there. Like one just then:

Jules22, let me ask you this: how would you feel if your boyfriend never gave you flowers, never took out out to a romantic dinner, never told you how beautiful you look, never bought you chocolates "just because", never gave you emotional support after a stressful day, never wrote you a love letter, and never agreed to help you around the house.  That's right, you'd dump him faster than you can say "it's not you, it's me..

Do guys actually do that? I've never met any who do. Thats a stupid stereotype its pretty much never the case.
And saying that women expect that is even worse.
 

God help me if anyone like that ever registers at my forum. They haven't yet, but I won't be giving them a pity party.

It might be a stereotype, but my husband has done all those things for me and more.

[RageBeoulve]

Its a natural thing for people to try to eliminate people that deviate from their idea of normalcy. Think about it. Why would a concept like normalcy exist?

Humans want the gene pool they belong to, to dominate.

[richard]

sophist thats terrible that you have to ask but i guess it is a sad fact of reality. this is why im out of business, im too stubborn!
alex can do whatever he wants now, as im no longer intrested in his bs love affair with AS

[The_Chosen_One]

sophist thats terrible that you have to ask but i guess it is a sad fact of reality. this is why im out of business, im too stubborn!
alex can do whatever he wants now, as im no longer intrested in his bs love affair with AS

That's the attitude that let him get away with it in the first place.

[richard]

at this point in the game im too old to get so emursed into someone elses life online anymore, and i guess trying to get after alex about his behaviour is gonna suddenly change how he is? if you really want to prove your point then i think boycotting is the only sane responce. besides in the end the truth always comes out and im shure in do time people will finally figure out just who he really is

[The Member Formerly Known As Sophist]

It's a hell of a speech there Sophist. You have said an awful of a lot. You have spouted your opinions and I have said mine.
I think that your actions and your ability shown here to justify a stance that is inherently wrong (in my opinion), is trying to dress it up (or righteous justify your actions), still smell off to me and always will. Your have done a great job of trying to convince us and maybe you have had some success here with some of the members. Not me.
Hell I don't hate you. I don't wish you ill. I have lost a lot of respect and trust for you but no biggie.
All the best with your endeavours.

Something tells me you don't exactly lie awake at night tossing and turning worrying about how Autism Speaks is ruining the world. --I don't spite you for disagreeing, Les. I am pissed though you seem to set yourself on some sort of high horse, acting all noble and whatnot. You're a good guy, down to earth, but not someone I would peg as overly moral to the extent you're sincerely capable of looking your nose down at someone like you're doing me right now. I'm pretty turned off by your gall in fact, not by your disagreement. Frankly, my dear, I think you're being an ass.

Seems pretty reasonable, actually. But still, Autism Speaks's goal, seems like, is to eradicate ALL of the Autism Spectrum, not just to see how Autism even ticks or attempt to alleviate the severe symptoms. I thought neurodiversity was about accepting others for who they are, not to just let them suffer. Still a better movement than the anti-neurodiversity movement, because the autistic adults and the parents of autistic children need actual support and positivity, not fallacies and negative propaganda.

Autism Speaks used to be more about eradicating autism. To be honest, nowadays they're just a business and are all about the money. They're not getting much done which would thrill either the pro-cure or anti-cure groups.

[The Member Formerly Known As Sophist]

On a side note: For anyone who has an issue with researchers getting funded via Autism Speaks, then become a philanthropist and help make it a non-issue.

I'm a researcher, I need money to do my work. There's not a huge number of organizations from which to choose to apply for said grants.

Give me money.

[The_Chosen_One]

The thing about the pro-cure/anti-cure thing is a total missive anyway. Anyone with 2 braincells to rub together would realise that autism CANNOT be cured, unless there is a way of doing genetic therapy (DNA splicing) to look for any particular gene. Personally, I don't think one exists - to me autism is the result of some misfiring of the neural pathways (sort of like epilepsy) but more severe in the fact that it affects more of the central nervous system and has a more damaging effect. Trying to 'rid' society of autistics goes down the path of Mengele and eugenics, and would lead to experimentations which would totally fuck things up altogaether. The only hope is that both sides could learn to accept autistics and people with AS as what they are, and help them cope to a better extent, without trying to kill them off.

[Osensitive1]

Ouch. Sophist and me are pals too.

[ProfessorFarnsworth]

I hope they give you millions of dollars for your research, not only because I think you will put it to good use to help people but also because every dollar they give you is a dollar that isn't going to make their commercials that make it look like having a child with autism is a fate worse than death.

Hopefully they're that generous, but I'm concerned they'll play dirty tricks with awarding grants, considering their reputation.

For instance, they could at first grant you a small amount of money with almost no conditions except what you propose. However when you need another grant, they might say, "We're sorry, but we cannot accept your proposal and award your grant; unless you change a few things in it, then we'll award it". Eventually they'll force more control over your research to a point where they practically manipulate it to their interests. If you refuse, it's simple, your research stops due to insufficient funds. This is why having them fund your research with isn't good news long term. They'll hold power over you when it comes to continued funding. If this is a one-time grant, that won't be a problem, but if it's ongoing research and requires constant funding, this problem may arise eventually.

This of course, would be an non-issue if their were a larger market of people/organisations readily awarding grants. Because if one tries to play dirty, you simply find someone else to fund you.

[The_Chosen_One]

here's Alex's Facefuck page:

http://www.facebook.com/alexplank1

[Charlotte Quin]

here's Alex's Facefuck page:

http://www.facebook.com/alexplank1

Which one of you is Rod Craven?

[Al Swearegen]

It's a hell of a speech there Sophist. You have said an awful of a lot. You have spouted your opinions and I have said mine.
I think that your actions and your ability shown here to justify a stance that is inherently wrong (in my opinion), is trying to dress it up (or righteous justify your actions), still smell off to me and always will. Your have done a great job of trying to convince us and maybe you have had some success here with some of the members. Not me.
Hell I don't hate you. I don't wish you ill. I have lost a lot of respect and trust for you but no biggie.
All the best with your endeavours.

Something tells me you don't exactly lie awake at night tossing and turning worrying about how Autism Speaks is ruining the world. --I don't spite you for disagreeing, Les. I am pissed though you seem to set yourself on some sort of high horse, acting all noble and whatnot. You're a good guy, down to earth, but not someone I would peg as overly moral to the extent you're sincerely capable of looking your nose down at someone like you're doing me right now. I'm pretty turned off by your gall in fact, not by your disagreement. Frankly, my dear, I think you're being an ass.

I am not "acting noble" I am displaying my disappointment and frustration at you. The two go hand in hand with me.

I am not qualifying what I feel. I would really like to draw a line between the behaviour and you and justify your ability to do what you are to do.
Would make it easier for me to say "Autism Speaks made her" or "She has no choice" or "They tricked her"

Fuck, anything really. Fact is I can not convince myself that you are stupid or naive or not thinking this through. I don't think these things of you and that makes it worse. You will do it knowingly and after carefully weighing things up.

You may be surprised at what keeps me up at night and what fears I hold in my heart. About how seriously I do take things.

As to morality. Well morality is an abstract concept. I am not by any means saintly. I flame and I troll and not overly gentle. I do have very set ideas on where I draw the line and what I condone. I could troll a troll forum or a flame forum all day and mercilessly and it would all be good fun with no pang of conscience. I similarly would not troll or flame a Cancer support forum. You see the difference? Morality

So I am not looking down my nose at you I am saying that you stepped into an area that is in my mind is out of bounds and seeking to justify it.
You can question my morality all you like but it won't change what you say nor my response nor my thoughts on it.