Karate Studio in my town supports Autism Speaks!! ! *GASP*

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imbatshitcrazy
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06 Apr 2011, 9:39 pm

they are supporters of them



babybuggy32
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06 Apr 2011, 10:01 pm

boo i do not like them either!


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06 Apr 2011, 10:28 pm

Is the karate studio a place you visit often, or even sometimes? Maybe if you talked to the owner about autism and explain that you are offended he/she'd understand.



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07 Apr 2011, 12:04 am

imbatshitcrazy wrote:
they are supporters of them


So I guess you are going to learn Kung-fu or Judo then.


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ducky9924
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07 Apr 2011, 12:27 am

This is something I've been wondering about lately. How the heck do you or should you broach the subject with well intentioned people involved with Autism Speaks?



draelynn
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07 Apr 2011, 12:26 pm

Impartial facts from charity watchdog groups:

autism speaks BBB review

Charity Navigator report

Basic facts show that only $.23 of every dollar donated go to the programs they fund. Some people feel the corporate officers make too much money and, in fact, their salaries increase almost yearly. But the big community concerns are that their main goal - of curing autism - isn't even possible for those already here. They use questionable, emotionally charged fundrasing tactics to prey on peoples fears and further spread a highly negative stereotype about autism to a concerned and fearful public.

Usually the $.23 of every dollar is enough to convince most people - especially if they are not personally involved in the autism part of the cause. People do not like to waste their money.



dalurker
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07 Apr 2011, 9:33 pm

draelynn wrote:
Impartial facts from charity watchdog groups:

autism speaks BBB review

Charity Navigator report

Basic facts show that only $.23 of every dollar donated go to the programs they fund. Some people feel the corporate officers make too much money and, in fact, their salaries increase almost yearly. But the big community concerns are that their main goal - of curing autism - isn't even possible for those already here. They use questionable, emotionally charged fundrasing tactics to prey on peoples fears and further spread a highly negative stereotype about autism to a concerned and fearful public.

Usually the $.23 of every dollar is enough to convince most people - especially if they are not personally involved in the autism part of the cause. People do not like to waste their money.


Using emotionally charged tactics for fundraising isn't questionable. First of all, there are lots of negative circumstances for autistics, and who is going to donate to a cause if nothing negative or scary is going on? Why should the charity be for only those who are already here? I think there are real concerns about them to be voiced. I wonder how much productive research they even do. I wonder how much money they waste on meaningless repetitive awareness campaigns. The 21% of total expenses spent on fundraising looks ridiculous to me. I don't know how much of the problem the high salaries are if the administrative expenses are only 4%.



draelynn
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07 Apr 2011, 9:43 pm

Autism Speaks usually doesn't show how negatively people with autism are affected... they depict how hard the parents and caregivers have it. If they are looking to improve the lives of autistics, it would stand to reason that they would actually give a voice to the people they are claiming to speak for.



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07 Apr 2011, 11:27 pm

draelynn wrote:
Autism Speaks usually doesn't show how negatively people with autism are affected... they depict how hard the parents and caregivers have it. If they are looking to improve the lives of autistics, it would stand to reason that they would actually give a voice to the people they are claiming to speak for.


They do basically not describe the problems of those with autism in enough helpful detail. I'd agree it's annoying listening to so much complaint about the plight of the parents and others. They aren't supporting much of a voice for autistics, and whatever voice of theirs they do support, has been far from ideal. And the prominent autistic voices coming from the likes of the ASAN aren't favoring the interests of the majority of the spectrum, as they have unhelpful goals of their own. I think that when high and mighty fortunate individuals set up anything, they're not prone to exhibiting voices and a mindset that are in touch with those who are at issue, unless they themselves are at issue.



draelynn
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08 Apr 2011, 7:16 am

dalurker wrote:
draelynn wrote:
Autism Speaks usually doesn't show how negatively people with autism are affected... they depict how hard the parents and caregivers have it. If they are looking to improve the lives of autistics, it would stand to reason that they would actually give a voice to the people they are claiming to speak for.


They do basically not describe the problems of those with autism in enough helpful detail. I'd agree it's annoying listening to so much complaint about the plight of the parents and others. They aren't supporting much of a voice for autistics, and whatever voice of theirs they do support, has been far from ideal. And the prominent autistic voices coming from the likes of the ASAN aren't favoring the interests of the majority of the spectrum, as they have unhelpful goals of their own. I think that when high and mighty fortunate individuals set up anything, they're not prone to exhibiting voices and a mindset that are in touch with those who are at issue, unless they themselves are at issue.


Just follow the money, it will tell you all you want to know.



ducky9924
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08 Apr 2011, 2:03 pm

dalurker wrote:
draelynn wrote:
Autism Speaks usually doesn't show how negatively people with autism are affected... they depict how hard the parents and caregivers have it. If they are looking to improve the lives of autistics, it would stand to reason that they would actually give a voice to the people they are claiming to speak for.


They do basically not describe the problems of those with autism in enough helpful detail. I'd agree it's annoying listening to so much complaint about the plight of the parents and others. They aren't supporting much of a voice for autistics, and whatever voice of theirs they do support, has been far from ideal. And the prominent autistic voices coming from the likes of the ASAN aren't favoring the interests of the majority of the spectrum, as they have unhelpful goals of their own. I think that when high and mighty fortunate individuals set up anything, they're not prone to exhibiting voices and a mindset that are in touch with those who are at issue, unless they themselves are at issue.


inc mini wall of text::

Well the problem is that everyone on the spectrum is kinda getting lumped together for the sake of unity. We seam to think if we're unified, we'll have a bigger voice. But it's not just one condition. If you look at someone with light aspergers and someone with heavy autism, they have drastically different needs. We might have a better time if the Asperger and Autism movements separated. Instead of those of us with Aspergers trying to change the image of autism to include us, we'd be better off building our own image and advocacy.

That doesn't mean we should stop advocating for each other, but we have to acknowledge we don't all have the same needs, and stop asking for what we want at the expense of someone elseware on the spectrum. Those with autism who dislike the cure message could still take advantage of, and participate in the aspergers advocacy, and vice versa.



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08 Apr 2011, 3:35 pm

ducky9924 wrote:

Well the problem is that everyone on the spectrum is kinda getting lumped together for the sake of unity. We seam to think if we're unified, we'll have a bigger voice. But it's not just one condition. If you look at someone with light aspergers and someone with heavy autism, they have drastically different needs. We might have a better time if the Asperger and Autism movements separated. Instead of those of us with Aspergers trying to change the image of autism to include us, we'd be better off building our own image and advocacy.

That doesn't mean we should stop advocating for each other, but we have to acknowledge we don't all have the same needs, and stop asking for what we want at the expense of someone elseware on the spectrum. Those with autism who dislike the cure message could still take advantage of, and participate in the aspergers advocacy, and vice versa.


Exactly. I'd like for those with aspergers advocating against cure, to explain why they really pursue policies that would disadvantage the other part of the spectrum, when they could likely have success addressing their own grievances by advocating according to their own circumstances.



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09 Apr 2011, 3:29 am

It goes both ways. Those who are pro-cure are advocating something that might either cause a genocide or force mind altering drugs on children who don't need them.

Thats our primary problem. We want treatments and cures to be available, I don't think anyone reasonable doesn't want ANYONE to have a cure. Butttt there are some timing issues if you care about acceptance and continued existence of our kind.

Senario A) If a total cure becomes available before we gain enough acceptance as a community and an acceptable state of being, then it's not just those with severe conditions that are going to get cured. It will be given to children who really don't need it and have no choice in the matter. Worse, we'll be weakening our species by eliminating an important variance in thought.

Senario B) If a pre-natal test becomes available before a cure or acceptance happens, we'll simply stop being born.

Senerio c) My idea of ideal. First, they develop treatments that do not cure, but manages the symptoms and make life better first. and make being a Autistic less scary. Meanwhile we make keep making inroads in Education and the work place. THEN someone comes up with a cure for those whom the above mentioned treatments don't work, or arn't effective enough.



dalurker
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09 Apr 2011, 3:48 pm

ducky9924 wrote:
It goes both ways. Those who are pro-cure are advocating something that might either cause a genocide or force mind altering drugs on children who don't need them.

Thats our primary problem. We want treatments and cures to be available, I don't think anyone reasonable doesn't want ANYONE to have a cure. Butttt there are some timing issues if you care about acceptance and continued existence of our kind.

Senario A) If a total cure becomes available before we gain enough acceptance as a community and an acceptable state of being, then it's not just those with severe conditions that are going to get cured. It will be given to children who really don't need it and have no choice in the matter. Worse, we'll be weakening our species by eliminating an important variance in thought.

Senario B) If a pre-natal test becomes available before a cure or acceptance happens, we'll simply stop being born.

Senerio c) My idea of ideal. First, they develop treatments that do not cure, but manages the symptoms and make life better first. and make being a Autistic less scary. Meanwhile we make keep making inroads in Education and the work place. THEN someone comes up with a cure for those whom the above mentioned treatments don't work, or arn't effective enough.


Cure likely won't really be a single treatment that could be administered regardless of severity. Due to the large variation in etiology and consequently symptoms, cure would come in particular forms targeted to the kinds of biomarkers that lead to impairments. It wouldn't make sense to administer a curative treatment to someone who doesn't need it, such as those who are doing well who don't have the impairment, and those whose impairment isn't caused by the specific problem that the particular treatment addresses.

Needs would have to be addressed on an individual basis, but that would be possible if enough awareness and explanation is applied to those who have responsibilities for these issues. I really doubt anyone cares to put anyone on unnecessary medications as long as they can't unfairly make money off it.



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09 Apr 2011, 9:56 pm

You're right that partial or symptom focused treatments are more viable and likely then cures, and I think that's what most anti-cure folks would like to see happen.

But our biggest Charity, Autism Speaks, is focusing almost exclusively on the development of a Pre-natal Test via genetic research. Their not focusing on research that will treat symptoms, rather they're looking to solve the cause directly or, more likely, find a way to test for it so it can go the way of Downs Syndrome. We can't get those treatments we need if they keep focusing on what their focusing on. If they do stumble onto genetic markers, any correction is going to be most effective when we are very young, before you can gauge the severity of the need.



dalurker
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09 Apr 2011, 11:20 pm

ducky9924 wrote:
You're right that partial or symptom focused treatments are more viable and likely then cures, and I think that's what most anti-cure folks would like to see happen.

But our biggest Charity, Autism Speaks, is focusing almost exclusively on the development of a Pre-natal Test via genetic research. Their not focusing on research that will treat symptoms, rather they're looking to solve the cause directly or, more likely, find a way to test for it so it can go the way of Downs Syndrome. We can't get those treatments we need if they keep focusing on what their focusing on. If they do stumble onto genetic markers, any correction is going to be most effective when we are very young, before you can gauge the severity of the need.


It doesn't seem like all of their research is completely genetic. Genetic research likely is indispensable to determining causes or even devising treatments. I wonder if gene therapy will be involved. That will likely have to be done along with research into the actual aspects of brain structure and function that are affected by the genetic variations, like lack of connectivity. I don't understand what indication there is that they're so focused on a pre-natal test.