Posted This On Autism Speaks Facebook Page

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So, should parents that want a better life for their children, not hope for one, and just accept the way things are? If it means their child will have to live in a group home for the rest of there life; accept as is? I think that is a conclusion that each person must come to for themselves and for those that actually understand best, what their children are going through.

It is sad that the statement above was made to play to peoples emotions, but whereas some of us feel that autism is an inseparable part of our being that makes us who we are; which is the way I personally feel, other people believe it is a horrible disease that takes their children's life away from them.

The saddest part is the statement is a reflection of reality for some, but obviously not all. I can understand how it sounds like hate speech for one that identifies Autism as identity or accepts it as a part of their child, but Autism Speaks intent is to establish it as an enemy outside of the child. I personally don't see it as an enemy outside of the child, but some do. In that context, it is not intended as hate speech, although it certainly can be viewed that way, and understandedly so for someone that doesn't see Autism as a disease.

There is no doubt that the organization is not perfect, and some of it is seen as imperfect, but there is no real evidence that anyone in the organization is evil and corrupt that anyone has presented. If someone could actually present real hard evidence that they intend evil or actually have been proven to do something intentionally corrupt I am still waiting to hear what it is. I'm looking for facts, but so far have only seen differences in opinions.

An opinion that what they do is evil and corrupt is quite understandable for someone that doesn't see autism as a disease. But to state that an organization is evil and corrupt, needs facts to back it up, otherwise it can be seen as slanderous by that organization. And whether or not I even like Autism Speaks that's not fair.

The organization exists for people that thinks Autism is a disease that needs to be cured; not that the children are bad things that need to be fixed or that they are hated. For a person or parent that considers autism a difference and a challenge and not a disease that needs to be cured those two views are never going to compliment each other.

So, if a person does not believe Autism is a disease a better avenue would be to support an organization that doesn't believe it is a disease.

The bottom line is they don't speak for Autistic people or parents that don't believe Autism is a disease. There are two points of view considered valid by those that hold them.

Personally I think think that Autism is a neurological condition that in some results in disabilities that are clear and observable, that will never be cured, but may be effectively managed in part from results from further research. The particular website we are talking on also shares the opinion that Autism is not a disease.

Wait, what does that have to do with ASAN?

Also, it's unsupportable and sometimes hateful but those Aspies don't have a highly funded organization directing public perception of neurotypicals and the condition of being neurotypical. Aspies engaging in "Aspie Supremacy" are wrong and misguided, and reflecting prejudice, but they are not in the same position of power. There will never be an Aspie Supremacist commercial like that, and if there were it would not be aired so broadly.

The quoted commercial has been critiqued by multiple people - it should be possible to find the relevant blog posts discussing and dissecting it and what is wrong with it.

Also, I mentioned this before, but Nothing about us without us (link). Autism Speaks does seem to be a lot of "without us." They've got one autistic person working with them, but there doesn't seem to be much dialogue or working with autistic people.

You have no evidence to support that Autism Speaks chooses to have a wholly negative impact. And they don't. And there is evidence they don't in the clear and measurable impact that results from the research they fund is having on Autistic people. The research they recently helped fund provides a new screening checklist that allows parents and physicians to screen children at age one for further diagnoses and earlier intervention.

Please explain to me how that is a negative impact to Autistic people and/or parents that want the best for their children? If you can't it is proof that Autism Speaks does not choose to have a wholly negative impact. And also evidence that they are fulfilling their mission. On the other hand tell me they make mistakes and peoples feelings are hurt by their portrayals of Autistics, and I will believe it because I have seen evidence of it.

But, tell me they are intentionally harming Autistics and they intend a wholly negative impact to Autistics, and I won't believe it because I can easily present evidence to the contrary.

I'm still waiting for proof that Autism Speaks is intentionally harming Autistic people or hates them? I've heard opinions but have seen no factual proof.

Why should I support a statement asserted as fact not backed up by fact.

If you stated that it was your opinion and others shared it, fine, but stating assertions that can be seen as slanderous by an organization that are not backed up by fact, is not what I see as a good road to continue to go down, but that is a decision for you to make.

It was not directed at ASAN. There are Aspies that give lip service to such ideas. ASAN has it's own rhetorical flair, but it is not so extreme as this.

Whether I have any evidence that you would accept or not makes no difference to the harm they are doing.

Just as inappropriate and harmful therapies are of no real value to parents who desperately want to help their child.

"Because they say so" is not a valid premise. I am only interested in reality, not the cynically exploitative claims of Autism Speaks and their affiliates.

Incidentally, while the choices Autism Speaks make have a wholly negative impact, I would never suggest that a negative impact is their motive. Their motive is simple gain; money, influence and status.

If there were a positive impact that paid as well I am sure they would choose it instead.

Autism Speaks went through three name changes and settled on this final one for a reason. Yes, they claim to speak for those with autism who are non-verbal in the most literal sense of the word. Yet, they chose the words above for a reason as well. They do not make distinctions or classifications in autism as a spectrum. They made a choice to represent not just LF autism but ALL autism with their 'I am autism' ad/public awareness campaign. Their message is painfully clear here. Autism is to be hated and reviled as some sort of monster. It inspires donation and influences public opinion through fear and revulsion. Are people capable of seperating this dreaded autism monster from the child or the person whom it is a part of? Is treating it as a disease to be eliminated the same thing as searching for a cure or treatment for those afflicted? Does this message give the impression that there is ANY other option? Is there any hope in these words that autism could possibly be decoded and better understood, not at the genetic level but at the human level, face to face? If Autism Speaks is all about the science then why have they pulled this deliberately psychologically manipulative advertising into their 'pure' motives?

How do you classify your autism? If your child is diagnosed on the spectrum, do you want them to know that they and their 'monster' caused your marriage to fail, that it drove their family into bankruptcy, that they stole sleep and all joy out of life, that they made you lonely and hopeless and that other people fear and pity them? Is it any wonder that people hate and fear Autism Speaks with a message so bleak , hopeless and devoid of humanity. Many in the autism community do NOT feel this way and shudder in horror that this is the message people in general are hearing on their behalf. I don't blame them.

Autism Speaks fundraising may fund some beneficial research. They may fund programs that could help individuals but at what cost? In our free, democratic, capitolist society, weighing the benefits against the costs is second nature. Many people have decided that the price Autism Speaks exacts is much too high.

You speak in such vague generalities that it is impossible to accept your words as anything other than opinion. And when asked for specifics, you continue with yet more vague pronouncements. You couch your language in respectable terms (e.g. "is not a valid premise") but offer no clearly elucidated defense of you position.

It would lead one to believe you have no defensible position, but that would be impossible to demonstrate as you will not lay out a position that can be scrutinized.

I am not arguing that they are intentionally harming Autistic people, that they hate them or that they intend to have a wholly negative impact on Autistics. I am arguing that the damage they in fact do to autistics cannot be justified by the good that they achieve elsewhere, and that as an organisation they would need to change radically to be operating an ethical way. And that, to me, is a pretty disgusting level of incompetence for a powerful organisation such as AS with members of staff on six figure salaries. It's disgusting and worthy of vitriol. Stop misrepresenting the opposing argument. What do I think the problems are with ASpeaks?

1)Their target market is parents, who hold the purse strings and the power, and they care WAY too much about what is easy for parents. It doesn't actually matter if you can't go to the f*****g park without being embarrassed or offending someone. It really doesn't. It is not worth putting your child through hell so you can achieve a family picnic. It isn't.

2) They don't understand how much effort and energy it takes out of an autistic person to achieve ordinary developmental milestones, and how that takes away their ability to achieve more important things that might be necessary. See the above example which focuses on giving eye contact, rather than any educational attainments which are actually useful in accomplishing anything but making NTs happy. They don't consider what the potential costs of changing these behaviours are to what that person might have been able to achieve technically or creatively if left alone.

3) They assume that all autistic people want to be able to make NTs happy, and encourage parents to put YOUNG CHILDREN in therapy to do that, without ever asking them if they want to do that or caring if they are able to make an informed decision. Acting NT is not necessarily better than acting autistic. I wouldn't have wanted to be tested for Autism at 2 years old and give up my natural (autistic, happy) childhood to therapy where my behaviour was constantly modified to make me seem more NT. Doing that would have "improved my symptoms" but it would also have changed what makes me me. And at 20 I may well have sat there and said that I was happy it was easier for me to get a job, and happy I didn't look like those other autistic people. I may even have actually been happier. Even if science could guarantee my I would have been happier, I wouldn't have chosen it. Autism Speaks assumes that the less autistic person I might have been with therapy is better than the person I am. They assume that this is such an obvious and universal truth that it justifies giving someone therapy, which shapes their personality before they are old enough to consent to it. I disagree. That's how early screening is harmful- IT MEANS THAT THERAPY IS GIVEN TO INDIVIDUALS WHO CANNOT PERSONALLY ASSESS THE COST/BENEFITS AND CANNOT CONSENT TO IT. It means that decision is given to people who DO NOT UNDERSTAND WHAT IT IS LIKE TO BE AUTISTIC, and Autism Speaks simultaneously takes NO steps to engage with the other side of that debate and allow the parents making that decision to view BOTH SIDES OF THE ARGUMENT PRESENTED BY PEOPLE WHO HAVE LIVED AS THIS NEUROTYPE.

I can deal with an opinion that you might present that their choices have resulted in negative impacts, but stating that they are doing harm to Autistics is a direct cause and effect statement. Glad to see that you state here that they are simply motivated by money, influence, and status; no one could prove that they aren't motivated by that; but by the same token no one has proven their intention is to harm Autistics. I'm glad you admit that now, but your statements before certainly sounded like an assertion that they were directly harming Autistics and were aware of it. That is where it sounds slanderous, if one says that and cannot provide facts to support it.

We live in a Capitalistic society where making money, having influence and status is seen as an admirable goal by most, so in general there is no reason to suspect that the leaders in that organization would not expect to be paid the going rate for a similar sized organization.

But, the funding they receive is in part based on how well they fulfill the mission that is promised to those that fund them. If the research they fund is seen as a potential negative impact to Autistics by those that fund them, they would likely receive less funding. They don't get money from researchers; they grant researchers funding, so there is no particular benefit to be gained from researchers for supporting a specific research guideline.

Wouldn't make much sense for them to choose research that might have a negative impact on autistics, if their main interest was to keep their salary, influence, and status as is. As soon as the general public as a whole sees them in anyway making an impact on Autistic people that is negative they will not only lose funding, but also influence and status.

That is a built in check and balance on any charitable organization that has led to the down fall of quite a few.

I am totally confused as to what I could possibly have said to lead you to believe that I care what you think?

You launched yourself at me, as well as several others with vitriolic personal attacks that seem to be some kind of, intrinsically doomed, attempt to establish dominance. As long as you do that I think you may find that most people cease to care what you think sooner or later, and I would be of the "sooner" persuasion.

Your questions makes sense if and only if Autism Speaks helped low-functioning individuals, as opposed to demonizing them and throwing away millions on conspiracy theory research and paying their board 6 figure salaries. Did you bother to read my post before you commented?
And we all know how productive melodramatic despair is when working with lower-functioning children, as well as pumping them full of chemicals and labeling them as "diseased". (x1)

Autism isn't a disease. The word has a definition. Autism ain't it. Moreover, the point was that this type of rhetoric hurts ALL Autistics- did you not read my post at all? (x2)


Mmmkay.
http://www.autismspeaks.org/docs/Autism ... 0_2009.pdf
2009 990 Form^
You'll observe the President, Mark Roithmayr, took home $372,292.
The Executive Vice Presient, Peter Bill, made a tidy sum of $256,240
The Chief Science Officer, Geri Dawson, made off with $439,848
You'll notice their total revenue for that year is listed at around $45.5 million
The grants actually paid out to programs for Autistics? $10.7 million
Salaries? $16.6 million
"Other" expenses? $16.4 million
So, in terms of this versus that:
$10.7 million on programs for Autistics / Revenue for 2009: $45.5 million = 24%
To give you some context on what that means for a "non-profit", that's...quite simply abominable.
http://www.time.com/time/health/article ... 59,00.html
^Peter Bell, Autism Speaks Executive Vice President, in light of "I Am Autism" backlash, muses that the company might in the future add Autistic individuals to "advisory" committees
http://www.guardian.co.uk/lifeandstyle/ ... mr-vaccine
Senior Executive Alison Singer resigns rather than be politcally-pressured into voting to allocate funds toward researching vaccine link^
"There isn't an unlimited pot of money, and every dollar spent looking where we know the answer isn't is one less dollar we have to spend where we might find new answers. The fact is that vaccines save lives; they don't cause autism."
http://www.newsweek.com/blogs/the-human ... peaks.html
Eric London Resigns from Autism Speaks Scientific Advisory Board^
'Says claims that "there might be rare cases of 'biologically-plausible' vaccine involvement ... are misleading and disingenuous". He goes on to say that that Autism Speaks was "adversely impacting" autism research.
http://autisticbfh.blogspot.com/2008/01 ... child.html
^Autism Speaks sues a 14 year old Autistic girl- apparently their panties got in a twist over her parody website which suggested "intervention" and "cure" for annoying and intolerant NT behavior was in order

The two are not related. "An opinion that what they do is evil and corrupt is quite understandable for someone" who is at all well-researched about what they DO. Knowledge of the definition of "disease" and that Autism is not one changes nothing. (x3)
In other words, people who are not at all well-versed in actual medical terminology. (x4)
If that were true, Autism Speaks would be researching cures as opposed to conspiracy theories.
Because we all know public campaigns to label Autistic children as "diseased" promotes better treatment of them. Uh-huh.
In other words, someone who is NOT ignorant of medical terminology (x5)
The only healthy "view" is that Autistics should be treated as the individuals they are, never labelled "diseased" or implied to be possessed by some evil demon, and should have the benefit of LEGITIMATE scientific research being done on their behalf, funded by the tax dollars of compassionate individuals who place their trust in an organization to do what it says it does

It isn't. (x6)
Some of us feel an ethical obligation to speak out against non-facts being perpetrated as facts to the shame of families and the detriment of already-vulnerable individuals. (x7)

That is to say, people or parents who know medical terminology. (x8 )



Do you have any other real defense in light of their tax records and "troubled" scientific research,
other than to chant incessantly that Autism Speaks is good and ethical because they represent the non-factual, unscientific and non-medical tiny minority of individuals who mislabel it as a disease?

Why not just be honest and call it what it is- a PR group for people with no scientific or medical background.
while simultaneously proclaiming to speak for Autism, period?

Last edited by Bethie on 12 May 2011, 5:53 pm, edited 2 times in total.

I just got back from a 3 plus hour presentation/meeting with a ton of these school officials. Director or special ed, school psychologist, principal, teachers.... etc... etc... I ran the whole meeting and allowed them to ask me questions. Net result.. I got everything I asked for. I swear... everything. Reduced schedule, no more social skills, ignoring all social quirks, etc... etc.. He is keeping his IEP for the accomodations that he needs but the SDI will be self-advocacy instead of social skills training and I get to work with the therapist to define and drive it. Holy crap I have to figure this out ASAP!! At the end of it all the principal shook my hand and encouraged me to write a book so that others can have this learning that she just absorbed. Then they all took turns and shook my hand and thanked me for giving my presentation and told me that it was exponentially helpful for them. The parents of this boy were not able to get these people to move or understand but for some reason, I did it. I don't know what I am doing except that I am apparently very obviously autistic and very much able to speak to them on their level. I am bridging the Language gaps it seems.

At the end it was disccussed that I do a bigger audience so now am being set up for a major presentation to educators and parents with the psychologist who I have been working with all along (the clinic that initially discovered me). This will be a presentation that will give them CEUs.

Surreal...

Tomorrow big (several hundred people) presentation for Intel and then speaking to this regional director. Whew.... Big week and need to catch up on all my thoughts... Thankfully it is the weekend soon...

It is also the simple truth. What would you have me do? Lie, on behalf of an organisation I have every reason to despise.

There is no margin in research that actually enables autistics to live productive, independent lives, just redundancy. Because once people understand how to enable us to do that, all the big money, all the publicity and all the influence will dry up.

The smart money goes with convincing the world that there is some superficial appearance of improvement, that serves to perpetuate the need for more research and more funding and more stratospheric salaries for Autism Speaks.

LOOK! A pretty painting!

Who said Hitler was all bad?

I personally don't give a flying f*ck about their intentions when what they DO stigmatizes Autistic children and rips off their supporters.

We've reached a pretty pass when the ethical argument is "Sure, they're corrupt greedy bAstards, but so is e'erbody else, so it's all right, yo."

Sure, if they didn't intentionally mislead the ignorant masses about the scientific validity of their "research", and where people's money goes.

Sure it would, so long as they don't DIE. That stage will be implemented when the pre-natal genetic screenings come in.

The general public knows jack sh*t about Autism except for what the media tells them, and as the most powerful and well-financed Autism "advocacy" group, Autism Speaks controls the majority of that information flow.

Yeah. When people like those in this thread kick up enough fuss about it.

Sounds like you need to go collapse for a few days... or at least for a few hours.

I have to admit, I'm jealous. If only I was able to get my daughters educational team to listen the way your Little's did. Unfortunately, I'm not 'autistic' enough. I am quite Aspie enough though... I meltdown when I need to put myself in a defensive position. When you are a crying mess, no one could possibly be able to take you seriously simply because social rules dictate that the 'overly emotional' are irrational thinkers as well. This is my main stumbling block, one I try and circumvent by writing out all of my concerns in advance.

Being able to address them in a professional, unemotional manner is what NEEDS to be done and I fear there are so few on the spectrum able to manage this that the rarer folk like you are the blessing in disguise.

I did note however, towards the end of my daughters IEP, when I was so frustrated and getting nowhere, I just blurted out that I DO understand what my daughter needs better than they do because I probably have Asperger's too. I know what she is going through because I've already been there. After the looks of shock subsided, their attitudes changed. I couldn't really tell you what they changed to but the adversarial attitudes did a 360 and they finally agreed to my written suggestions - and in independant review found exactly what I told them to look for.

You are the perfect example of why we need someone on the spectrum capable of stepping up to talk for those that can't... and say the things that need to be said. Your personal success is the model by which NT's measure their own success - your position affords you their instant respect. Thank you for working that for all its worth.

I've never suggested they are a perfect organization and respect the way you view this based on your personal life experience. It is possible later on down the road you may look at it from a different perspective as others do. None of us that are high functioning have any idea what it is like not to be able to communicate how we feel.

But, just as an example a program that documented a young womans experience with autism that could not communicate gained the ability through ABA motivational techniques to communicate with a laptop computer. What was thought as a child that was severely ret*d was found to be a child that had an amazing deep understanding of the world around her.

But she also related the torturous sensations in her body that she experienced every second of the day in relating to her father if you could just be in my body for one second you could know how horrible it is. Yes, she continued to engage in behavior like smearing feces, but it wasn't because of lack of intelligence but to focus on anything else but her torture.

Parents can only guess what their children that can't communicate experience with autism, but in this case a child got the ability to speak and express it as a result of an effective therapy that brought her a way to communicate.

Likely the parents of this child feel fortunate to have gained the ability to communicate with their child, while another parent whose child did not benefit from the therapy would have a different view.

The fact of the matter is some of us have options and some of us have very few options, and while the corrective measures aren't perfect we are dealing with humans, complex, each having a unique set of circumstances.

I'm pretty sure that a family picnic for that family was the least concern of their daily routine. And as I stated elsewhere you and I don't see Autism as a disease, but can you really blame that family, if they don't see it, just as a difference. I doubt anyone could convince them of that. I'm sorry, I can't. I don't think I am misrepresenting that concern.

The results of the research that come from Autism Speaks are not just influenced by Autism Speaks. They are influenced by hundreds of different researchers and autistic people that are involved in the research. And the same research that Autism funds is funded by many other sponsors. Autism Speaks is the biggest organization but not nearly the only one that influences what may be the result in future treatment options.

When you state that Autism Speaks as an organization that does damage to Autistics all of your above specific relationships to harm that you see being done by treatments to Autistic people is not harm that Autism Speaks is doing directly; at most it is harm caused by a treatment not usually directly related to Autism Speaks. And again for new interventions there are many other sponsors besides Autism Speaks.

Perhaps they provide awareness of treatment and endorse treatments as many others do, but I don't get why this is only Autism Speaks problem. If they weren't around the treatments would still be given to the children; so whose fault is it then?

If there is fault to be found, it certainly isn't nearly confined to Autism Speaks, but I don't hear anyone complaining about all those other sources of research and awareness of treatments, and the agencies that actually fund the treatment for children.

As long as the treatments are legal and approved by the medical Community, I'm not quite sure who we can pin the blame on for someone that experiences negative effects from them.