Autism squeaks, but it's better than Autism Squeaks speaking

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it is easy enough for an organization to abuse a system and bend the rules. they could have us all deemed dangerous. and have you ever seen the autism every day video? yeah thats what i'm talking about. i don't think i need to link it. it's pretty well known.

Another quick note: I don't want the little autism I have to go away, it is not the problem, so what does it matter how much autism you have? There are people whose autism COMORBIDS stop one's ability to be functional, but there are people with hardly any autism, like me, whose comorbids are huge but isn't what my problem is so I appear high-funtioning. Also, being NT has its own just as many problems.


I used ot have problematic comorbids tho.)

That is impossible under US laws, as they exist. Autism Speaks has no legal authority what so ever over any person with autism. They are just a non-profit charitable organization like the Muscular Dystrophy foundation.

Yes, I've seen the Autism every day video, but would have never seen it, had I not visited this website as it was removed from the Autism Speaks main website years ago, and is no longer presented as a mainstream documentary, because some found the content offensive.

It would likely be long forgotten, as the only place it is currently propagated is among individuals who visit online autistic community websites. Personal opinions were expressed in that documentary, not official recommendations per the Autism Speaks organization, nor was it censored as to what people could not express as a reflection of their personal experience in the documentary. However Autism speaks did limit access to it, by removing it from their main website, after offense to the content was evidenced.

It's highly unlikely the little autism you have is going to go away even if you were to try to force it to go away, as it is evidenced per US code as disorder, that inherently limits brain function, per laws that govern the American with disabilities act, as one of the medical disorders that consistently meet the ADA definition of disability.

Beyond this autistic like traits, through research have been measured out into 30 percent of the general population in the US and Sweden. It's not likely those traits are going to go away, or that introverts are going to suddenly become extraverts as that related personality trait, is also associated with differences in brain functioning, but not limits in brain functioning.

Beyond the disorder of autism there are thousands of other disorders, including hundreds of other evidenced neurological disorders scattered amongst those in the general population. Beyond this there is no typical neurology per the process of neuroplasticity, that wires every person's brain unique to their life experience.

If you haven't read the autism speaks interview that was done by an individual with autism that is linked in the previous post, I suggest you read it, because autism speaks addresses your specific point that there are people with autism that are happy the way they are, and don't need or want any interventions.

The autism speaks organization is completely aware of this, and completely supports the opinion you provide here as it relates to you as an individual and others whom have similar sentiment, as evidenced in that interview, documented in the link, in the previous post.

I don't financially support autism speaks; I would rather support a local organization in my area, that I found using the guidestar.org reference, but Autism Speaks has an evidenced respectable mission, that is providing evidenced valuable benefits for individuals with autism. Every mission of every organization, that benefits individuals with autism, is vital, and no one organization can possibly meet everyone's needs with an autism spectrum disorder.

I enjoy pursuing facts, always have, and this controversy is a special interest for me, just as is the health care reform act, that I have provided a similar focus of effort in dispelling myths, that you can see in my post history, or the neanderthal theory of autism in reference to immigration policies, politics, religion, and many other issues of controversy.

This one though, is the easiest one to dispel, per the myths that exist.

What I've found most interesting since coming to this site, is that individuals with autism, definitely do not lack emotion, as has been a stereotype in the general public, as opinion is often highly motivated by emotion here, as much or more than any internet site that I've come across.

I have provided many of the evidenced benefits that Autism Speaks does indeed provide to individuals with autism, and have had people insist that none of it is good, even with overwhelming third party evidence that provides a different reality, disassociated with the emotions running high with the issue.

You appear to be a reasonable individual, but it doesn't appear that you are aware, that for the most part, autism speaks is in agreement with the concerns you have for yourself, related to a cure concern. And, I don't fault you for believing information that has been provided to you that has not been tested as being factual, as this is the downside of information provided in opinion blogs on the internet. I would not expect anyone to believe anything I said, if I couldn't back it up with evidence. For the most part there are anonymous individuals taking part in the conversation, including me. The reputable third party sources are held accountable for the information they provide.

excellent post.
its doubtfull any cure would ever change what people like about themselves anyway.what are people really afraid of.

In my opinion, and in what has been proposed by sociological theory, social cohesion on the internet can be enhanced in keeping a group together by finding a common enemy to focus on. It can be harmless for some, like opposition between football team fans, religious ideology, and political ideology.

There was one post in another thread that amazed me, as an individual whom could likely qualify for free medical care under Health care reform act, wished Obama dead, because healthcare reform was upheld, in fear that this individual would not be able to afford health care fees that would be forced upon them.

It is the scary part of hyperbole on the internet because unfounded hyperbole is fun for some but can actually cause serious anxiety for individuals that they likely could do without, if provided factual information.

There is no doubt in my mind that some people really believe that autism speaks is coming to get them, and they really do fear for their life.

Meanwhile in 180 cities on an annual basis there are 340K parents, grand parents, and friends of individuals with autism, as well as some individuals with autism, walking in charitable walks for an organization attempting to raise money to help individuals, not unlike the March of dimes.

The idea that Autism Speaks is coming after individuals with autism, is about as realistic as Jerry Lewis coming after the kids that the March of dimes supports, in their decades long charitable effort to raise money.

However, the internet can help make people believe almost anything when anonymous individuals can conjure up whatever reality they choose to and spread it. Particularly if it serves a common purpose, as a common enemy, theorized by some as what keeps some internet communities together on a long term basis, where otherwise they might fall apart.

Not a big deal on this internet site, because there are plenty of other common enemies that can be found, per politics, philosophy and religion. But it is perhaps a much larger factor per the chapters of ASAN, as the chapters of that organization are very small and disconnected across the US, with email contacts, blogs, and facebook rather than one source of thousand of individuals in an internet community like Wrong Planet.

It seems like a common hatred against Autism Speaks has been one of the main driving factors keeping that organization together from the beginning.

It is the only non-profit autism advocacy organization that publicly criticizes another organization. Which wouldn't be so unusual if they didn't endorse another organization on the same fact sheet that meets or falls short in some of the standards that they criticize autism speaks for on the same sheet, the autism society of America.

While not much is going to come about from the pro and con arguments against autism speaks on this internet site between anonymous individuals, other than name brand recognition for the organization, it is a more serious issue for ASAN, because the credibility of that organization will be judged on what the organization presents as fact just as all other non-profit organizations are.

There will come a time when that organization is analyzed by watch dog groups, now that they are attempting to raise donations as a 503C non-profit organization. At that point when comments are accepted on a nationwide basis, they will as an organization face the same potential for negative comments potentially impacting the credibility of that organization, if they can't be refuted. Which includes answering to why they openly criticize Autism Speaks, for meeting or exceeding standards that are also associated with ASA, the organization that they endorse on the same fact sheet on the ASAN website, that autism speaks is criticized for.

What is even more unfortunate though, is that the continued unmerited comments about autism speaks can provide actual anxiety for some individuals with autism, that actually come to fear harm for themselves, as Autism speaks is portrayed by ASAN in that factsheet on their website as an organization that is portraying Autistic people as burdens that should be eliminated as soon as possible, instead of the reality that Autism Speaks is addressing disabling symptoms and co-morbids associated with a disorder.

ASAN is considered a professional non-profit organization by the government, not a group of anonymous people on the internet expressing emotion over a controversial topic, that are not considered authorities on the issue, as is the case across the internet where anonymous individuals discuss the issue.

Here is a link to that excerpt and the fact sheet where ASAN criticizes autism speaks financials per their charity Navigator rating that ASA matches; the fact that they don't have any board members disclosing a diagnosis except for John Elderson Robison whom they refer to as a token, whereas one of ASA's board members discloses a diagnosis and consists of two parents of an individual with autism as opposed to 10 parents on the Autism Speaks board of directors; arguing that Autism Speaks doesn't provide enough money for support for individuals with autism when Autism Speaks provides more support than the three organizations that they endorse on that page, put together; the inaccurate statement that autism speaks funds are devoted to the prospect of prenatal testing, when their research restrictions as evidenced in my previous posts clearly do not include funding for the prospect of prenatal testing, and they have directly stated in the interview provided on this site, that they do not support funding of a prenatal test. And finally arguing against the salary of autism speaks being the highest among autism related organizations, as one could reasonably expect since they are the largest autism advocacy organization in the US, although the salary of their CEO is below the median salary of large charitable organizations in the Northeast, per the Charity Navigator organization.

If there are any perfectionist minded people in that organization as far as avoiding mistakes, as it seems there might be since some on their board list Ph.D credentials, it's interesting that the emotional content appears to be more important than the facts. More evidence though that they don't think much differently than the rest of the herd of human beings, motivated by emotion over reason, particularly if there is not an ear for constructive criticism.

On a professional level though they have nothing to lose and potential to gain by allying forces with Autism Speaks as they have with the Autism Society of America. The alliance with the Autism Society of America was a step in the right direction.

Ironically, the Autism Society of America is considered "a cure organization" with a sister organization the ARI Autism Research Institute that has absorbed the DAN defeat autism organization, which approves of chelation as a treatment for heavy metal poisoning which is FDA approved, where evidenced associated with autism. The research organization is still looking into the potential that mercury is associated with autism and heavy metal poisoning may be a factor associated with autism, which is still an area of research for other research organizations as well.

More interesting is the current parody site of autism speaks that still exists on the internet accuses autism speaks of "superficially" supporting chelation, in part because the autism speaks resource guide, offered a link to DAN certified doctors, among thousands of other alternate resources, that autism speaks disclaimed as a medical recommendation, while that organization is now part of the ASA sister organization the ARI. I suppose that parody site could report the same for ASAN now, but in no case was chelation recommended for a non-FDA approved use; not by autism speaks, ASAN, ASA, ARI, or DAN that has now been absorbed by ARI.

http://autisticadvocacy.org/wp-content/uploads/2012/05/Autism_Speaks_Flyer.pdf

Last edited by aghogday on 13 Jul 2012, 9:54 pm, edited 1 time in total.

That's good for you. What if I wanted a cure? You don't get to make that choice for me anymore than I do for you.

I come to this forum and I see people screaming about how they are happy being autistic and how it's who they are and they'll never change.

Then I can go to 5 other forums and read about how aweful life is and how they need to go jump in front of a train.

Which one is it?

i understand why people dont like autism speaks,i dont like autism speaks

i was just talking about anti cure paranoia and the belief that something that would take the sting out of symtoms would somehow change ones soul

I don't think some can actually wrap their mind around the fact that some people with autism spectrum disorders actually suffer with associated symptoms. If they do understand that some people suffer, it's heartless to suggest that a cure should not be attempted for that suffering.

But, I don't think that some people understand that is what autism speaks means when they say cure, alleviating suffering not getting rid of actual people.

If it wasn't for that miss-communication, I doubt there would be much paranoia, but those myths of eugenics continue to be propagated on the internet. The anti-cure paranoia at large is evidenced as a result of the "scary" urban myths that have been spread around about an "evil nazi group" called autism speaks that is trying to eradicate all autistic people from the world.

If it wasn't all about autism speaks, and that urban internet myth, attention would be focused on hundreds of other organizations that participate in autism research associated with alleviating suffering through what many have referred to as a cure for decades well before autism speaks came on to the scene.

The autism society of America has been a cure organization since 1965, and is endorsed by ASAN, that says volumes that this whole anti-cure scare is directed at myth instead of a reality.

The ASAN and ASA are crooks too.there all crooks

what we need is the autism tea party

I don't think any organization is perfect, and don't agree with everything that any of these organizations do, but have seen no evidence that that either of the three organizations do not have a focused intent to help individuals with autism.

I'm just disappointed to see the ASAN organization publicly criticizing another autism organization on their website when many of those criticisms do not appear to be based on reasonable information, and not meeting professional etiquette appropriate for a recently IRS classified nonprofit 503C organization, unless there were evidenced abuses, like what has been reported at the JRC.

As one can imagine what it would like to the general public if Autism Speaks were to put fact sheet out on their website as why not to support another autism organization. They don't even make endorsements, which is professionally correct non-profit organization etiquette considering that they are in competition for funding, like all other non-profit organizations. It's not like they are selling a consumer product. There are third party watchdog groups and social networking sites that take care of the endorsements and criticisms.

Autism Squawks does not squawk for me.

Nor do they attempt to do that as evidenced on their website, as the phrase autism speaks was originated as part the effort of an organization founded to give a voice to the families of effected individuals with severely incapacitating forms of autism per what the founders grandson was diagnosed with, regressive autism.

http://www.autismspeaks.org/about-us/founders-message

i think the name was made to say that they would speak for us. end of discussion. why would they speak for families? they are capable of making noise. some days i feel as if autism moms are the loudest voice drowning out other autistic people. they have no problem with being vocal. no need or desire for someone to represent them.

You appear to be understanding the phrase autism speaks in a literal manner. But that is an inherent issue with autism spectrum disorders that individuals have difficulty understanding metaphor, which means that the phrase means something other than how it is literally read.

In this case the phrase "autism speaks" is used as an idiom, where "a disorder" does not literally speak. As defined by the founder in the previous post quoted and linked from their website autism speaks is "what began as idea to give a voice to the millions of disenfranchised families around the nation".

That voice is literally provided to the millions of disenfranchised families around the nation to voice their concerns through the many social networks provided by the organization but it is also metaphorically provided in the actions implemented by the organization, in part, through the charitable walks comprising 340,000 volunteers across the nation, advocacy rights for expanded insurance coverage for children, greater awareness, resources, educational efforts, and research initiated to potentially help those family members with autism spectrum disorders.

It is not reasonable to suggest that the organization was literally intending to speak for individuals with autism when they define what the idea means on their website as providing a voice for the millions of disenfranchised families around the nation.

Before the organization was founded those families feeling disenfranchised in the ability to voice their concerns and take positive actions in regard to their family members with autism spectrum disorders, like the severely incapacitating regressive autism disorder that the founders grandson had, were not provided the opportunity that Autism Speaks provides since it was founded in 2005.

Of course you have the right to understand the phrase "Autism Speaks" in a different manner than it was intended, but the intent of the idea is provided by the founder as quoted and linked, and it is not one of speaking for individuals with autism whom can speak for themselves.

i think aspie48 gets the so called metaphor.
however autism lies would be a more accurate reflection of there true motives.

i am not anti cure but thats quite precisly the problem.it promises of a false cure that" autism lies" uses to milk desparate parents out of there money.