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.
