Which one do you find more offensive?

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It is a very bad thing to not be independent. Nobody believes otherwise, and living without abilities really does cause individuals to miss out on things.


That's not true in every case, and even if it was, it's not enough. What kind of life is it to remain helplessly dependent on another human?



You pretend way too much to care about those involved. I'm just not buying it. I'm not impressed with your valuing of the "human element", when you think it's satisfactory for some others but not yourself, to be enthusiastically relegated into the care of busybody caregivers like they're pets, while they are forced to live impaired, consequently not getting to do many things or know certain knowledge, while the caregivers get to be praised and pat themselves on the back for looking out for the weak.

Autism Speaks can FOAD!! !! !! !! !!

Yeah, I'm sure, if autism could be cured. It's a neurological disorder you're born with, not a disease. An autistic's brain is just arranged differently. In no way is it a defect.

And yes, it can cause problems and stress. So do many other things. It's a part of life. But in no way is having Autism dooming someone to be limited.

Trying to cure autism is like trying to cure someone with blue eyes. It's not even something that's harming a person's health.

They aren't terribly easy to come by, but I have found a husband-&-wife duo who posts YT videos of their son, James.
[youtube]http://www.youtube.com/watch?v=s2lEyno1vwo[/youtube]

I disagree. Again, it's a spectrum.

http://www.ted.com/talks/ami_klin_a_new ... +-+Site%29

Dr. Ami Klin has had extensive experience with people across the entire Autism spectrum. I agree with much of his philosophies concerning Autism.


TheSunAlsoRises

A spectrum is supposed to range severity, might I remind you.

You still make a fair point.

Actually, this is my point.

TheSunAlsoRises

I just don't see why Autism speaks is all that bad. You may feel that you are being de-humanized by them, but that's not their intention at all. There are many individuals for whom autism severely impairs their daily functioning and quality of life, and for those cases, Autism Speaks' grim representation of Autism doesn't seem that far off-base. Autism Speaks does not speak for us, and they never intended to. Okay, Autism Speaks may be in it only for the money, but that sounds like just about every business organization ever.

UnLoser

I agree with a lot of what you've said.

I have observed a tendency of those on the 'higher end of the spectrum' to view Autism solely from their own personal lens, unable or unwilling to recognize Autism as a full spectrum(of abilities and disabilities) that may differ from their own. I believe as one moves toward the 'lower end of the spectrum' and more services are needed; this type of ideology becomes problematic.

In essence, this is one of the reasons Autism Speaks thrives. I think Autism Speaks(with it's vast resources) serves a large population that is not being represented, as well as, in other organizations.

*Note: I recognize being labelled with higher or lower functioning Autism is NOT necessarily the determining factor in the type and amount of resources you may need.

*Note: Also, I recognize people on the so-called 'lower end of the spectrum' do the same thing BUT often-times a power differential rest in those on the so-called 'higher end of the spectrum'.

TheSunAlsoRises

Sorry, I can see where my communication wasn't clear, I didn't mean that there were no videos available like that anywhere, just not in the realm of autism speaks PR efforts.

I didn't click on the video, but am glad to hear they are rare to find, although there are some realities hard for some to imagine unless one sees the reality of them. I don't think it is likely that anyone that is part of that reality, would suggest that autism isn't much of an issue to adapt to, or does not warrant funding for research looking for answers.

Autism speaks does provide a source of support for families and individuals on the spectrum that likely never would otherwise have an opportunity to express their desire for a cure, or even understand what that could possibly mean in a life of only experiencing life in one way.

The spectrum is what it is, there are no clearly defined terms for individuals in this situation other than severely impacted by symptoms associated with a disorder on the spectrum.

But it is not how all experience life on the spectrum, nor could most offering opinions on the internet possibly understand this experience unless they walked in those shoes.

Autism speaks is up against a semantic issue of what part of the autism spectrum they identify as a far off goal for cure. Not likely to get any better in the future when there is only one name for the entire spectrum.

There isn't enough space in a mission statement, to maintain someone's attention, to identify all the specific parts and associated conditions of autism they seek to prevent, treat and even potentially cure at some point in the future.

The general public doesn't have the time or effort of attention span to pay attention to those kind of details. They can't make their PSA's into a science class of gastrointestinal illness, immune system problems, depression, anxiety, self injury, the loss of speech, etc. etc. etc., and yes the smearing of feces.

About all they can say is they are an organization funding research into prevention, treatment, and cure for all those that struggle with autism to maintain attention and support from the general public, or put up some eye catching statistics that people can identify with. At least the children are portrayed as happy consistently for those concerned about negative portrayal and stigma.

It's very difficult for some to understand that the mission statement doesn't apply in specific effect to all equally across the spectrum, even though the organization has already clarified that point to the autism community, in detail when asked, as well as detailed on their site, if one looks at the actual research emphasis and goals of the organization.

Walmart is selling school supplies across the nation with the puzzle icons to generate funding, awareness, and acceptance efforts in a cooperative effort with Autism Speaks. The packaging doesn't have much space for details, but it identifies that 6 percent of the money is donated to Autism Speaks the largest autism advocacy research organization funding research for a cure for autism.

A few people in the autism community were mad enough to start a petition to try to kill the effort, as they were outraged that the word cure was on the package, with the opinion that it was actually going to harm some children, per offense taken from the awareness and acceptance effort. No doubt some will be offended.

Autism speaks cannot possibly please all in the broader autism community, comprising millions of individuals impacted as well as family members providing a great deal of care to many individuals on the spectrum, with their marketing efforts. All they can do in some cases is accept the criticism and move on in meeting their mission and goals, in consideration of those millions impacted across the globe, that aren't online expressing contempt or support for the organization.

Of course, there are over a million that do support the organization, and efforts like the Walmart one, per the number of likes on their face book page. Not very likely Walmart is going to back away from selling those school supplies with a petition of a few hundred names.

It's too bad the advertised autism community can't usually generally come to agreement, as they did on the Scarborough incident.

Actually, I didn't mean it to be that way. Sorry if it came off as being offensive (not my intent). I bolded the part to indicate which portion of the reply I was responding to. I know what you meant for the most part. I just posted that person's video because most people haven't watched/don't know about such videos. Even some of the better autism organizations don't have much resources in this realm. The people many organizations "display" are the bubbly 4-10 year-old non-verbal children who aren't on serious medications and who don't beat the living hell out of themselves (SIB). Because of the (what seems like) reluctancy to show how those on the lowest-functioning end of the spectrum live, many of these individuals don't get the help they (and their families) need. What's out of sight is often out of mind...

No, I didn't find your response offensive at all, and I agree, it's a hard lesson of reality, for those that can't see what the full spectrum is like from their individual perspective in life, and can't see what the full concerns of people are in regard to these hidden realities of autism, that are too harsh for any organization to present to the general public. Although, I can't bring myself to watch it, because I find it terribly painful to watch, it certainly could provide a different perspective for those that might get upset, because Walmart is selling pens that state autism speaks is funding research for a cure for autism.

I had a child that didn't survive a co-morbid condition associated with autism, so I've never had a problem with autism speaks serious tone in regard to the nature of potential struggles of the condition as well as co-morbid conditions, but again, I guess it is a matter of one's personal perspective and experiences in life.

These are the individuals and families that organizations like autism speaks, may eventually bring hope to if not in the current generation, potentially future generations, through the research they fund.. And even if not successful, it would be a loss not to apply the best efforts possible to help.

I can try to imagine what parents of children or adults whom are in positions like this think and feel, when they see able bodied smiling people protesting volunteer efforts to help these individuals on the spectrum. I support their first amendment rights to do this, but it is certainly could be very disturbing for some whom are only trying to help individuals across the spectrum, through their volunteer efforts.

Likely almost to the extent of someone protesting a funeral, per the emotions of disgust that would likely exist among those caring for children or adults who struggle like this. And just for clarity I am not providing an analogy of a funeral to autism, just the emotion of disgust when one's empathy feels like it is trampled on.

There was another discussion on this on another site, where the Walmart issue was discussed, and the outrage was at the extent where one person suggested the person that was protesting the fundraising effort was not human per their offense at the cure language on the pen packaging. It is an extremely emotional issue that continues to divide some in the larger autism community.

Over a word like "cure". A magical word for the individual and family portrayed in that video. Unfortunately there are some who would likely say he shouldn't be cured, if there was a cure, unless he could tell someone he wants to be cured.

I'm not sure how anyone could come to that determination, after watching the video. As for most to hear a comment like that, after seeing the video, would indeed sound inhumane.

I can imagine how outraged some people would be if there was a way to include a video like that on the package of the pen. It really shouldn't be required to get the message across that autism is a serious issue, that warrants the research that is currently being done.

And a message like that is not required for the majority of the population who do not experience autism at all. It's not a message that everyone wants to hear, but autism speaks is in part responsible for getting a tactful effort across to the general public, as well as the government, that autism can be a very incapacitating disorder for some on the spectrum, that does indeed warrant serious concern and effort through a fundraising campaign for research into better diagnosis, therapies, treatment, prevention and yes, even cure, for the more disabling symptoms and co-morbids associated with autism, if that is possible at some point in the future.

Unfortunately, that part, doesn't even seem remotely possible in the future that most will see in their lifetimes. But it is still a worthwhile effort to continue to search for answers. As is the case for other disorders and disease where the search continues on for decades, where only approximations of answers have been found for some disorders and disease, many of which, that are or can potentially result in disability.

Autism Speaks isn't for autistic people, it's for people who think autistic people are a burden that need to be cured.

I agree with UnLoser. I have a brother with VERY severe autism, and - even if people WERE more accepting - he probably would still want to live a life where he could communicate like most people, get married and have a family, get a good job, go to college, etc.

He's 19 years old, but has a mental age of 5 and speaks at a 3-year-old's level. He's a sweetheart, and it hurts me to think that some people with Asperger's or HFA think only of themselves when talking about not curing autism when there are several people like my brother who probably WANT a cure.

I, personally, wouldn't mind a cure myself. I hate having Asperger's. It has ruined all that I ever worked for since I was eight years old. Thanks to it, I will never be a teacher like I wanted to be.

If there ever IS a cure, I think that those who don't want it should be able to opt out of it, and people who want it should get it. It shouldn't be so damn black and white!

Absolutely agree, and I too have a relative (second cousin) with profound autism as well as profound epilepsy. These anti cure people need to realize their are people much much worst than them with Autism who desperately need a cure.

I hope that "disturb the sound of silence" is not in reference to autistics who don't talk.

Also the 80% of parents getting divorce...I guess if my parents do get divorce then I'm to blame them. Newsflash parents: having children is the equivalent of gambling. You knew the risks once you decide to get in bed which each other and agree to have the baby. The last thing you should be expecting from a child is picture perfect.

"Shouldn't you be prepared for that day?" What's there to prepare for? Seriously.