Stop Bashing Autism Speaks!

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The first thing that came to mind was someone holding an actual bird in their hand waving it around. Seconds later, I understood you actually meant flipping people off using their middle finger.

A lot of words, but not a single quote. Why? Well because each major thing she claims is wrong

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Last edited by MarcusTulliusCicero on 16 Dec 2011, 3:19 pm, edited 2 times in total.

not sure of the point you're making, MarcusTulliusCicero - my posts are fine, thanks for quoting them though (i think. i mean it was an interesting idea and i'm not sure of the reason but it's cool to see them all lined up). i think perhaps you're misunderstanding my posts, but i don't think a clarification would be too useful at this point.

anyway it's off topic so i'll let other people continue the conversation about Autism Speaks.

Nope, of course it's my fault again

Pointless arguments aside, the subject remains...

Autism Speaks has a core aim of research, mainly aimed, still, at eliminating autism. They have absorbed other groups with even more explicit anti-autistic aims. They have exploited marketing approaches that rake in cash, at the expense of the public awareness of what autism is. They still chose to finance research mainly aimed at elimination of autism, although they have diverted a minuscule amount towards support - even though their remit probably does not allow that - but hey, they're trying to keep themselves going, when even non-autistic people are questioning their motives.

So, what other changes are visible? Well, Autism Speaks seems to be buying in some autistics (to minor/peripheral roles). That appears to be it.

How can a charity go about changing their professed goals, without returning all the money they have collected?

They are stuck with a name that will never be true, associated with a prime directive that will always be reprehensible.

Depend on what one's needs or opinions are.

Autism self-advocacy is possible, those on the spectrum are capable of different levels of self-advocacy. It would not be reasonable to expect a child with an autism spectrum disorder like Rett's Syndrome or Childhood Disintegrative Disorder to advocate for themselves in a significant way.

These disorders require a great deal of advocacy from others.

On the other hand those reporting a diagnosis that are the highest of functioning are employed as lawyers, IT specialists, English Professors and even have achieved Presidential appointment so they indeed are capable of leading self-advocacy efforts.

There is an entire spectrum between these two extreme examples, for those that require 24/7 advocation from others to survive to the ability to lead self-advocacy efforts that do have measurable positive results.



Autism Speaks has a core mission that is dedicated first and foremost to those with autism that do not have the ability to speak for themselves, anywhere from 20 percent to 40 percent depending on which resource or definition one uses for this issue.

They dedicate their resources to three core aspects of their mission, research to find solutions to help people that struggle with autism, awareness of autism, and hope for the autistic community which includes family as well, for those that struggle with autism.

If one does not believe their mission statement is of benefit to them, or agree with their mission one should not support that mission or the organization, there are plenty of other organizations that focus on other areas of concern regarding the autism spectrum, worthy of support.



Has autism speaks core mission changed? The focus of their mission is essentially the same now as it has been in the past, so no not in any significant measurable way.

They have responded to some complaints and adjusted accordingly, but the overall mission remains the same, as far as any objective evidence that I can see.

They are definitely growing larger and advancing what they offer in terms of their specific mission, as all successful organizations do. With that comes some additional benefits to all associated that may benefit specifically from their mission.




From a detailed review of available evidence, I don't see any intentional malice toward anyone that the organization has initiated, mistakes yes, but all organizations do make mistakes.

I think much of the hatred of the organization comes from an incomplete understanding of why the organization was founded, and what the organization's mission truly is and isn't.

Expectations of what it should be don't seem to match the reality of what the organization is and and has always been, per the mission statement.

For instance if one expects the organization to suddenly apply their direct focus to direct financial aid to autistic individuals instead of research, it would take a major revision of their core mission statement.

If the core mission changes one can anticipate the potential of a change as such. Until then, it's not likely to happen, and it wouldn't be realistic to expect it to happen.

You're basically defending somebody for being bad because it's unlikely that they'll act good.

Any assertion about Autism Speaks only talking about non-speaking autistics is bumpkis. Maybe it should rename itself 'silence autism', given how many of its criticis are swallowed up under threats or mountains of words.

No.

That was not the question.

But not from people who have no insight.

I don't follow what you say here, and I don't much care for your attitude - meritocracy? I advocate by listening.

Pointless observation.

No, it does not.

No. They plough the bulk of their ill-gotten gains into the first of those, and play lip service to the other two.

Yes. Supporting (almost) anyone other than Autism Speaks sounds good.

Yep. Cure Autism Now. Destroy Autism Now. Eradicate Autism Now. That's their message.

Yes.

No.

Rubbish. They have blatantly attacked autistics, and still do.

No. No misunderstanding.

No. They match exactly my expectations, and always have.

Yes. They can't do that. They are just wrong.

Yes. That's why I cannot accept anything they do, as it can never be of any use to the autistic community.

I try to stick to facts when possible. The qualifications and achievements of the individuals that lead the ASAN organization are public knowledge. These individuals do indeed lead a self-advocacy organization, and have achieved measurable results.

I'm providing facts as I find them. I can provide evidence that Autism Speaks does benefit some individuals in the Autistic Community, so it definitely depends on whose opinion one seeks to provide an answer if there are any benefits of supporting the organization.

It also depends on what one's definition of Autistic community is. Autism Speaks considers the families of autistic individuals as part of the autistic community, when they talk to the point of bringing hope to the autistic community.

This internet site is composed of a community of parents of autistics and autistics as well as anyone else that wants to be part of the community, as are many others, overall I think this is an accurate picture, in effect of what the autistic community is.

Per quotes on the website from the founders, the organization was founded to give disenfranchised families for children with Autism a voice. While the first and foremost concern as quoted from the founders on their internet site are those autistic children that cannot speak, the concern of the parents is not separable from that concern, per evidence from the website.

I haven't seen any evidence where the organization still blatantly attacks autistics, other than opinions on what the definition of cure means, etc. Do you have any evidence to back up that assertion?

There are a few accusations in the past that are questionable per individual opinion, but there has never been any actual evidence presented of intention of malice against autistics other than opinion, that did not have a reasonable explanation that I have seen, exceeding poor judgement, or mistakes.

Redacted

Last edited by nat4200 on 19 Apr 2012, 5:27 am, edited 1 time in total.

These are the claims that have been made, that I referred to as accusations from the past.

Interestingly the link above takes one to an accusation that was initially reported by the individual that provided the information on the incident as censorship by autism speaks but later clarified as a mistake in communication from the company that made the T-shirts.

If one scrolls down the clarification is provided.

This was settled about two years ago but there are other accounts that still circulate that don't clarify that the incident was resolved as miscommunication.

All it took was a call to Autism Speaks to find out the facts, someone eventually did, and the incident was resolved.

The cease and desist letter that was sent to the young girl has been questioned as an action of ill intent, however there have also been some here on this site that don't have any kind words to say about Autism Speaks that understand the objective legal rationale for the decision to send the Cease and Desist letter.

Some have pointed out Fair use guidelines as a cut and dry defense for malicious intent by autism speaks, because the site was stated to be a Parody Site.

However, there is clear legal precedent where parody and fairuse are not always successful defenses, against trademark/copyright infringement depending on the content of what is said to be a parody site.

Autism Speaks was eventually contacted and they provided an official response that stated there was no intent to sue the individual, and that they have an obligation to protect their trademarks.

There are many instances where it has been suggested that big companies have abused their power, using high powered lawyers to scare people out of what is normally considered fair use, however only a court of law can determine if those actual guidelines are met when fairuse is challenged by those organizations that are obligated to protect their trademarks when they are legally considered infringed upon.

So technically there is no legal judgement, determined by a court of law as to whether or not fair use guidelines were met or not, therefore no actual evidence of malicious intent, only opinions that vary on this incident.

I've seen the blog accusations, but never any actual content referenced as censored.

Not too long ago someone posted a comment on the facebook support site of Autism speaks that stated that the organization was a cult; that statement still exists on the site, so I have a hard time believing that there is an unreasonable effort by autism speaks to Censor Autistic voices on their Internet site.

These sites are likely moderated by human beings, some potentially volunteers, so there is the potential that someone made a bad decision on moderating a comment somewhere that an autistic person made that was just critical and not reasonably offensive.

But at least, lately the restrictions on comments don't seem to be too unreasonable judging from the comments that exist on their blogs and support sites.

Tambourineman here got an interview with the organization, a blog to express a neurodiverse point of view on their internet blog, and a scathing admonishment from some self advocates for having a relationship with the organization, and receiving compensation for his writing, that expressed a neurodiverse point of view from the organization.

It's the only real censorship on an autistic, in association with Autism Speaks, where real evidence exists, that I have seen so far. That's interesting, and provides a different perspective about perception vs reality, regarding Autism Speaks.

The actual complaints against the organization that have reasonable merit for serious concern, that I can see, are the two videos "I am Autism" and the video documentary "Autism Everyday".

These presentations could be seen as reasonably disturbing, particularly if a child with autism saw those videos. Complaints were made and action was taken to remove the Videos, from their website a couple of years ago.

Unfortunately the videos are still show cased, per fair use, by users on self-advocacy sites, with the same potential damaging effects to autistic children that may gain access and view those videos.

The intent is to provide evidence that Autism Speaks did something bad in the past, but the potential result could be emotionally damaging for an autistic child having the opportunity to view those videos.

I doubt many have ever even considered that potential. I've never heard anyone voice that concern.

Autism Speaks did provide a public apology recently in an interview done with the organziation by Tambourineman for the mistakes they have made in the pasts, and offenses taken.

It's probably time to move on, at least from the perspective of those two videos that are becoming more of a distant memory from autism speaks website, and still a present reality on some self advocacy sites.

And finally, some do take their marketing verbiage quite literally with respect to comments in the past like Autism Epidemic, Erasing Autism from the History Books, eradicating autism etc. as an indication that the organization is out to eliminate Autistics.

In their recent interview the organization clarified it is not their intent to effect anyone that does not struggle with the symptoms or co-morbids associated with Autism and it is their intent to find solutions for the struggles that do exist for some through research.

They still use the word cure in their mission statement.

But, they were recently willing to remove a statement from their site about the Autism epidemic specifically because complaints were made on this website about it, the comment about erasing autism from the history books no longer exists there, and there is no more talk about eradicating autism that I am aware of.

The idea of finding an intervention that prevents the regression that occurs in autism that occurs for some or a cure for GI problems that are co-morbid in autism, is certainly not morally reprehensible.

These are some of the goals of the research that the organization supports. There are no breakthroughs that I have seen, so far, on these specific issues, but there is no potential for breakthroughs without research.

I don't financially support autism speaks, but I did have a child with disabling co-morbids associated with autism, so for me, I see a place for research along side the other concerns associated with the autism spectrum.

The organization has about 340 thousand volunteers; these folks are out to help individuals with autism that do truly struggle in life.

Most of these folks are not seeing any mirage with regard to Autism Speaks Mission. It is clearly one that focuses on research; some see hope in that research; as long as there is a potential of any type of breakthrough for the more disabling symptoms and co-morbids associated with autism, there is a real source of hope.

For those whom the only appropriate reconciliation for Autism Speaks to make would be to end the research and instead use those dollars for direct aid, it's simply not going to happen, unless those 340K strong, that support the organization through physical efforts demand it.

There is no significant indication of this I have seen among Autism Speaks Supporters.

In fact, there has been concern voiced among those supporters that the organization takes a pro-vaccine stance, and does not focus more research dollars in the avenue of vaccine research, including the daughter of the founders of the organization.

What is the bottom line of all of this?

It's not an organization to support if one does not agree with Autism Research. There is little to no evidence that the core mission of the organization is going to change, in the foreseeable future.

The available evidence shows there is a tremendous amount of support for that mission, and a relatively small amount of dissent against it.

What's the good news for those that don't like Autism Speaks? There are well over 2000 other non-profit organizations, as reported in the Guidestar.org watch dog group, that monitors charitable organizations, just in the US, associated with support for Autism. Some that need both financial aid and volunteer support.

In the grand scheme of all Autism related non-profit organizations, Autism Speaks is a small portion of that effort, and receives a small amount of the total funding provided.

The federal and state governments by far, are the greatest contributor to support those with Autism that need direct aid through special education services, direct financial aid for subsistence, and medical support.

Likely exceeding the amount spent by all non-profit organizations associated with Autism combined.

There's no getting around that Autism Speaks is a highly emotional issue. While I don't deny them the right to exist and go ahead with whatever sort of mission/agenda they want, I do take issue that they proclaim to speak for all Autistics. Well, they don't speak for me. And apparently, they don't speak for many people here at Wrong Planet. I also take issue with the name "Autism Speaks," because it implies that it is the voice of people like me, when it is not. A more realistic name would be "People Speaking for Autism," because that is what the group is. Other than a couple of token Autistics (most likely to try and appear more balanced and fair after recent complaints), we really have little or no voice there.

The problem is that their agenda appears to have little or nothing to do with people like us, on Wrong Planet. And they don't want anything to do with us, even if we are the people they are trying to save/cure/whatever. To have a group called "Autism Speaks," yet having no one with Autism speaking, is rather ludicrous.

The founder of the organization came up with the idea of Autism Speaks as a voice to the millions of disenfranchised families around the nation.

So yes, you are correct the slogan is about people other than autistics speaking, They make that clear in the founders message on the website. However there is no indication in that statement that it is the organizations intent to speak for anyone with autism than can speak for themselves.

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





Their grandson had regressive autism. Lost the ability to communicate with the world, and I understand he's gained some of that ability back. That's their inspiration, clearly indicated on their website. The focus of the organization, historically, has not been on Aspergers, or adults with any form of autism.

The founders of the organization, do not appear to be trying to hide that fact, though, or indicating their focus is not where it truly is.

From an historical perspective barely any of the organizations research efforts, until recently, have been directly associated with Aspergers syndrome. The evidence of that is clear on their website, also.

It will be good for them to expand that effort to include others on the Autism spectrum. The joint venture with the owner of this site, was a start, along with a few adult autistic voices in the organization. There is also a small amount of research recently iniated on adult issues associated with autism.

There are a few adult autistic people making a positive impact on the organization to provide some support for autistic adults. In effect, much of it is because of the efforts of a few autistic adults that took that iniative.

They are the few adult autistics that represent that Autism Spectrum demographic within the organization. The organization couldn't make any adult autistic individual represent themselves within the organization, until actual adult autistic individuals took that iniative.

So far the owner of this site, Tambourineman, and even John Elder Robison in some respects have taken quite a bit of criticism from autistic adults for their association with Autism Speaks.

It's not too surprising that not too many autistic adults are motivated to get involved with Autism Speaks. There has not been a great deal of support for the individuals that actually take this specific iniative in the past. Maybe people are starting to get used to the idea, and will be more accepting of it in the future.

... the same stuff again.

I'm providing information, not only for response, but for anyone that might pop in looking for facts that can be verified through third part references.

Some of it is repetitive, but I'm not just responding to your viewpoint, I'm doing my best to provide objective information, for anyone that might be interested in it.

Isn't that supposed to be a PR person's job? Just saying.