Some one explain the problems with Autism Speaks?

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Well lets just take away all choice and let you make the decisions then.

That's probably really best, isn't it?

you realize that when you use absolutes, you will be wrong almost every time. Some people do like being away from other humans. Its also impossible to discuss Autism Speaks, Autistics etc without some generalizations. Guess what, you don't speak for them anymore than the rest of us. Your comments should really have the personal pronoun "I or ME" not to mention all the alcoholics and drug addicts who often state they use to escape from the world.
I don't feel cut off from the world, just my world of socializing is probably much smaller than most NT's.

Another big problem is the huge spectrum that is Autism. ASpeaks claims to be curing ASD which includes all of us. If they focused on Low Functioning or there was a better distinction between the various locations on the spectrum the hate would be less if AS was more specific on their target population and goals. Dropping Asperger's from DSM is just going to magnify this issue.

Also Autism Speaks is Dehumanizing Autistics into subhuman or second class citizens. Referring to us a a furking puzzle rather than as actual people. They seem to focus purely on the problem and not on the positives of ASD. Showing Autistics who are smart or successful might cut into the Money Machine

The problems that I have with Autism Speaks is that Autism Everyday video where the parents are saying nasty things about their children in their presence. I also don't like how that one set of parents are trying to drag their son to the playground, when it's quite clear that he really doesn't like going there. I don't like the mother who said that she almost drove her and her autistic daughter off the bridge, than she decided not to because she has thank goodness an NT daughter who needs her, in the presence of her autistic daughter. I also don't like how that other mother degrades her autistic son by changing his poopy diaper on camera, making it out that incontinent and or autistic children all grow up to be ret*ds who ruin life for their families. There were a lot of bad points in that video, but the diaper scene strikes a chord with me the most, because even though a certain person that I look up to and myself have a problem in that department, our problem came back in adulthood, after many years of perfect control.

And there is my problem as well. Those of us who are HFA or Aspergerian (and the difference is debatable even among medical professionas) can advocate for ourselves, and therefore, we do. That, however, does not mean that we have no disability. Blind people and paraplegics can be perfectly intelligent and advocate for themselves, but it does not make life all flowers and sunshine. I have had SERIOUS issues in my life due to my Asperger's which lead to severe depression, breakdowns, suicide attempts, etc. But Autism Speaks seems to believe that anything other than Kanner's autism is not worthy of attention. Okay, fine.... That is their choice and I'm alright with that.... but...

What they DO seem to advocate for is parents who are embarrassed, inconvenienced, and frustrated by their children. The parents, not the children. But that's okay too, as long as no one is pretending to know that most low-functioning or non-verbal autisitc children WANT their lives to be different. As long as no one is claiming to read their children's minds and claiming that because care-givers are miserable, then the children must be miserable as well.

As I wrote before, I am not claiming that Autism Speaks is or is not doing those things, I'm just asking questions. I am a very functional (and I like to think, on my terms, successful person on the spectrum), but I have a handicapped sister with spastic diplegia and severe developmental difficullties. If she is loved and kept happy, then, as much of a burden as she can be to those around her, she has the best life we can give her. If she would have to go through hell just to make lives easier for four or five other people, it doesn't seem like a fair deal. The only thing a cure would help is the one caring for her. If that is NOT what Autism Speaks is in favor of, then I'm fine with them.

Last edited by dyingofpoetry on 17 Jun 2012, 2:25 am, edited 2 times in total.

Very few want to be away from them all the time. But individuals should make those choices for themselves as to quantity of time away from them. Anti-curebies want to make that choice for others by keeping them from being cured, through claiming others want to be isolated.


Are you telling others who disagree with me that they don't speak for all of us?


They do focus on the low functioning.


That's an overused false exaggeration.
Showing successful ones in ads doesn't bring in money for the unfortunate autistics who need the money. Nobody is going to donate money to a cause for those who are already successful. They donate to help the unfortunate. And money is needed to carry out research.

It wouldn't be fair to one's sister if they could be afforded the opportunity to live an independent life and was refused that opportunity. The problem is, no matter how much the child is loved, once parents and family are gone, those whom are dependent on others are at the mercy of others.

But at the same time, disability is a reality of life, that can visit anyone at any given moment; no one is immune from that potential. It's rare that answers are found for individuals with severe disabilities; but it doesn't hurt to try find answers.

It's highly unlikely that the physical changes like the abnormal brain growth that exists in tandem with regressive autism, are going to be reversed or cured, or that your sister will be cured with her condition, but there is the potential that these conditions might eventually be prevented in someone else, in the future, through research efforts.

And there is also the potential that research will lead to better interventions and treatments where no cure is available.

Autism Speaks has branched out their research efforts into areas that impact those across the spectrum. All of that information is clearly identified on their website, if one looks at the actual research they are funding. It's also been linked and quoted in these various threads.

Beyond this autism speaks is not funding research for a cure in their current year research. It's not even a possibility until causes are specifically identified for symptoms, of which so far are only loosely associated. The long term goal is one that is hope at this point, and there is no valid reason to take all of that hope away, however slim the chances associated with that hope may be.

Those who benefit the most in the short term, from research, are more likely going to be individuals that are not as severely disabled, such as those potentially impacted by the research that autism speaks is funding to protect the diagnoses of those individuals identified with "milder" forms of autism, per DSM5 concerns. As well as the research the organization is funding to identify autism spectrum disorders in the general population, in hopes of providing better access to diagnosis, and available community support for those individuals.

Autism speaks is not providing reruns of the "Autism Everyday Video" on their main website, nor have they done so in years.

The most likely place to see that video, or to hear the descriptions of what happened in it, are in threads like this one. It's interesting that the organization responded to the offenses taken by those that didn't like the realities of autism portrayed in that video, by removing the video, but it continues to be advertised in online autistic communities through the continuous mention of the video by some that took offense to it years ago.

A similar issue exists with the "I am Autism Video" that hasn't existed on Autism Speaks website for years. There is no significant issue of concern usually expressed other than those two videos per marketing efforts, that have long past moved off the radar of the Autism Speaks marketing efforts.

It is only online autism communities and various autism speaks oppositional blogs that still actively market the videos to the general public. For those that can identify with the emotional concerns, that may come across the online communities or blogs, it is another opportunity for someone to become emotionally motivated enough to consider offering another financial donation to the organization, among the millions of others that are already contributing.

This is rather frustrating, as many of those children do learn to communicate in some way (verbally or via facilitated or augmented communication), and already have some means to communicate at least some of their needs. Some indicate they want to be cured, some indicate they do not want to be cured. Many indicate they do not appreciate people making assumptions about their needs or speaking for them, and yet every time this conversation comes around, someone is quick to disqualify everyone who can communicate from the discussion and invoke "autistics who cannot communicate at all."

It is completely unnecessary to invoke people you believe cannot speak for themselves in order to argue in favor of a cure. The truth of the matter is that a lot of autistic people would take a cure if offered. And a lot of autistic people would refuse a cure if offered. And these two groups are not neatly separated into "HFA never wants a cure and LFA always wants a cure." The fact that some want a cure, regardless of their ability to communicate or their apparent ability to function is actually a good enough reason to argue in favor of developing a cure. There's no need to speak for or over any particular subgroup who is deemed too incapable of communicating on their own behalf.

This probably sounds harsher than I want it to. I just mean: There's no reason to explicitly set aside a group of autistic people and say they are completely incapable of practicing self-determination. The fact that some autistic people explicitly want a cure is sufficient reason to argue that it is okay to want a cure.

I don't really talk about why I don't want a cure at this point because all too often people who are invested in the idea of a cure seem to want to dissect any explanations given (as happened to some posters in this thread).

Yep, these autistic geniuses do in fact need a cure so they can fit in better with people whom have normal intelligence.

What about money to provide better environments for the unfortunate autistics...then spending it all on searching for a cure and treatments that more or less try to force them into neurotypical behavior which to them is probably unnatural.

The goal of applied behavioral analysis is to make the autistic indistinguishable from his peers.

What are better environments? Cure will really solve the core problem. Cure will be cheaper in the long run. There already is some money spent on long-term care for the unfortunate ones. And again, I don't know what neurotypical behavior is.

I don't like your trolling.

I don't need any cure from Autism Speaks. Thank you but no thanks. I am fine just the way I am and other people should learn how to get along with me without constantly bashing me for being autistic. So does that make me a troll because I have a mind of my own? Or does my intelligence threaten neurotypicals ? Are neurotypicals so envious of me that they have to constantly remind me that I am mentally ill so they can feel better about themselves ? When autistics offer solutions to the worlds problems a neurotypical will say "Physician, heal yourself"

You're trolling cause you know that cure isn't intended for the super-intelligent. You know that cure is for the low-functioning to make them high-functioning. Many individuals are envious of high intelligence, so high intelligence should be shared with others, so they can have that intelligence too.

NO person on this thread is "TROLLING" in my judgement.


if you think someone is a troll please contact a liasion or moderator in private messsage

Environments that don't tell them they are 'wrong' for being autistic and thus behaving in an autistic manner and with supportive people who care about them and their well being, not who just want them changed or cured so they won't be such a 'nuisance.' Also I am sorry you don't know what neurotypical behavior is but I am sure you could look it up starting with a google search, there is not an exact single definition of it but its basically behavior that is considered that of someone with a neurotypical brain.

Also I think more of it should go to that sort of thing, though by long term care I don't mean stick them in some institute to be forgotten about...hell I might even suggest society is changed some to accommodate those with disorders like autism, kind of like they do for people in wheel-chairs and virtually any other physical ailment.