Would you be willing to help fund research grants?

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Okay, this is just a simple poll for me to get an idea of the general willingness of people to donate a little money or time to help fund research grants which are specifically intended for Neurodiverse-friendly research-- i.e., things which would directly benefit us and/or we would like to see researched.

So, how about you? Don't think of this as giving huge amounts of money (unless of course you're rich and you want to ). Think of it as something comparable to doing one of those autism walks and donating a few bucks or helping to collect sponsors, that sort of thing.

--And, no, this isn't anything obligatory. Just a poll.

I want one of the grants. I've been doing research on myself and NT society all my life anyway so I have a lot to contribute.

You're welcome to apply for one of the grants if/when we get this off the ground.

Just curious, but since more people have answered maybe, I'm wondering wherein lies the hesitation. Would you prefer me to be more specific as to what I mean by "research". Have I been too vague?

Frankly, I am SICK of most research. Most simply finds out the obvious. If you could be more specific, I might be more willing.

There are organizations that handle funding already, and laws against discrimination, so I think the focus should actually be on obligating researchers not to engage in research that is harmful to their subjects (i.e. is based on negative attitudes). For example all that ridiculous theory of mind stuff that was never really supported by the data in the first place. And the overall distribution of funding among various kinds of research. I think this is about accountability, not about increasing funding, or trying to compete with traditional research.

Allocating funding is complex. I think I would have problems donating money to an inexperienced funding body. It's too easy for something to go wrong. I would rather the experienced funding bodies get their acts in gear and do their jobs right.

Of course I don't have any money anyways, so it's all academic for me at this point.

Well, some areas of research that I'm thinking of specifically at the moment (but definitely aren't limited to) include:

* Community Based Participatory Research, where essentially the community of interest (in this case, autistics) actually partner in the research rather than just be subjects. So they are involved in the design and analysis as well.

* Quality of Life research (some of it may be obvious, but unfortunately many scientists won't listen unless you can cite academic papers )

* research which explores the make-up of ASCs (for instance the study of neuroanatomy/chemistry, cognitive functioning, etc.) This sort of research, while a classic part of research, doesn't usually get the bigger grants these days because of the huge cure focus and knowing how something works doesn't exactly allow you to prevent its occurrence. Nowadays, genetic research is getting the biggest bucks.

The final example would of course need to be rigorously overseen to make sure that the research proposed is indeed neurodiverse friendly. For instance, I would love to help set up a brain bank of autistic brains; right now, as always, brains are in short supply. However, if autistics were assured that their donations would go ONLY to research which is neurodiversity-focused, this would be a HUGE boon to the autistic human rights movement because we essentially would control who studies us and who doesn't, so we can move the research into the areas WE want to see as opposed to the parents' movement. Let's face it, we'll own our brains a lot longer than our parents will (being considered a dependent), and parents usually are very reluctant to donate any of their child's body anyways simply because the child has often died so unexpectedly.

I know I've posted about the brain bank idea before, but this is sort of an extension of the idea.

My real purpose for this thread is to find out if, as autistics, we would actually have the money, the dedication, and the determination to help support the research WE want to see, since that is one area where we not only could help improve lives but also further the human rights fight as well. If we start paying the researchers, they're going to have more incentive to listen to what we have to say. We may never convert the parents, but right now I really think researchers are going to listen whoever's paying their grants.

I can understand your hesitation. However, waiting for Autism Speaks to "get their act in gear" could probably be likened to hell freezing over. And when it comes to funding, yes, NIH and NIMH do provide many grants. But these days, federal funding is only going down and funding from parental-run organizations is only going up.

Already the parents groups have gotten into the arena of research by funding and by essentially dictating what the funding should be used for. That's not going to change. But if somehow we were able to begin competing by funding grants and dictating their uses, I think we would begin to see a change of professional views about autism.

It's wonderful to stick to one's morals and go by what one thinks is best. However, as with politics, many researchers must sell their souls if they wish to get funding, especially if they want BIG funding. And right now funding is very tight, so it's cutthroat.

I appreciate your view that they should just straighten themselves out; that would be wonderful if that happened. But I don't think it's a realistic view at the moment. So, given it's unlikely occurrence, this may be the next best thing.

And as far as funding experience, yes, I definitely agree. I wouldn't trust my money to an inexperienced organization. But I didn't say said organization would be inexperienced when it comes to funding.

What do you want research for????

No research is necessary, just lobbying for our equal rights as a minority. Same as for homosexuals, blacks, Jews and any other minority.

What would one not want research for?

As far as the lobbying, I don't disagree, that'd be great. But that sounds a heck of a lot more expensive than funding some grants. Plus, going via politics, what they do is pass bills that give us money and support. Which is brilliant. I'm not saying we shouldn't get that. But without the research, we'll never UNDERSTAND autism. Diagnostics will never get better, we'll never know what makes us tick, therapies won't get any better...

There are many aspects of our lives that could be improved by a shift in research focus. One way to help that shift along is by being the ones who fund the grants. Not to mention such a shift would be faster; look how fast the research world has come around to Autism Speak's way of thinking. And then take your example: how long have homosexuals been fighting for equal rights? Blacks still don't have equal rights. Do you want to wait that long??

One thing I'm saying is that this is ONE WAY we can help turn the tides. I'm not saying NOT to lobby. I'm not saying to NOT try to get these other funding organizations to change their ways, or for researchers to stop cowtowing to them all the time. THIS IS ONE WAY.

Frankly, I'm a bit surprised by this opposition to the idea. Not angry, I just find it a bit baffling. --Unless the general mood I'm hitting up against here is paranoia about science and research in general, in which case that is a different topic and a different thread.

There's a lot of research that has helped us. You think Lorna Wing just suddenly came up with the idea, "Hey! Asperger's Syndrome!" one day? No, she's a researcher. Or anyone here who's on meds; you think that came without research? Wouldn't it be great if there were med trials specifically ON autism to test the efficacy and usefulness of certain meds and bring about improvement? Or how about research into cognitive-behavioral therapy for autistics? You wouldn't have all this without research, and you won't see future improvement without research.

So I ask why NOT research?

Some people are very suspicious of science, they see it as a threat. I have read quite a number of threads like that basically saying 'science' itself is the major conspiracy, they see no difference between the extreme positions and those wanting to do some objective research. It's science's fault Just go on AFF and you'll see what I mean, out an out paranoia. That is just as bad as 'curbies' IMO.

To be honest I'm not in a position to fund research grants. If I was I would want to know about the actual research programs and give directly.

I was thinking lawsuits, actually, since I don't have the patience to wait for people to straighten themselves out. But I wasn't aware that so much funding was private. I thought it was mostly public, where accountability is much easier to go after. Even so, lawsuits. (Depending on the country etc.)

So they are TOO STUPID to think for themselves!?!?!?!?!?

Given some of scientists' past mistakes, some wariness is warranted. However, if one were actually to fund the grants, just like Autism Speaks does, we would then have the power to dictate how science helps our lives. So by funding research, we'd actually be combating the very reasons people have become paranoid of research in the first place.



My idea would be a combined Board of both autistics and academics (and hopefully some autistic academics) who would review the grant proposals and allocate funds based on the organization's philosophy of pro-neurodiversity. With such a set-up you would find out what research was funded after you donated money rather than before. However, the Board would be set up in such a way that its members would be representative of the people (autistics) meant to be helped by the research.

Also, no donation is too small, even if it's $10 a year, if that. Those are the kind of donations I'm thinking of. Hopefully we'd also attract people who can give greater funds, but they aren't really the focus of this thread. This is kind of similar to how some people donate a few bucks to the upkeep of WP, that sort of thing.



Ah I see. Well, if there's some legal grounds on which to file a suit, I am all for it. I don't think we should have to limit our "tool box" when it comes to furthering this human rights issue. I just think research can be another way we can make a difference.



Yes and no. Some make a living ignoring the Science of the Bleating Obvious while others are better taught and just don't want to assume without researching first. That is after all the foundation of science and the scientific method, especially since humans have made plenty of other assumptions which at one point they thought were obvious but ended up being incorrect.