[ASAN]Protest against Autism Speaks, Columbus, OH, Oct 9

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If you're in the area, please join ASAN's Ohio State University chapter in challenging Autism Speaks' exploitation of Autistic people and our families. Nothing About Us, Without Us!

Time
Sunday, October 9 · 8:30am - 12:00pm

Location
Corner of Fred Taylor and Borror Dr., Ohio State campus, Columbus, OH

More Info
Join us as we protest the Autism Speaks walk on Sunday, October 9 from 8:30am to 12:00pm. We are actively looking for fellow protesters -- come one, come all!

We will be protesting Autism Speaks' lack of community support, its support for eugenics, its unethical advertising practices, its failure to include Autistic people in its decision-making processes, and its failure to spend money in ways that help Autistic people across the life-span.

The protest will take place at the corner of Fred Taylor and Borror Drive (called Arena Dr. on google maps), right by the 4-H Center.

Campus map + driving directions:
http://www.osu.edu/map/building.php?area&building=191

For more information, please contact ASAN-Central Ohio at [email protected]
http://asancentralohio.blogspot.com/



The Autistic Self-Advocacy Network (ASAN) is a non-profit organization run by and for Autistic people, fighting for disability rights in the world of autism. Working in fields such as public policy, media representation, research and systems change, ASAN hopes to empower Autistic people across the world to take control of their own lives and the future of our common community.

It seems reasonable for an organization that is against a cure, and against research for a prenatal test, to protest that Autism Speaks supports a research effort into the development of a definitive prenatal test to provide potential corrections and tempering of the developmental disabilities associated with Autism; or to protest the government or hundreds of other organization's support of research into the development of a definitive prenatal genetic test for Autism, because the resulting test might be used as information for some women to determine whether or not they want to exercise their legal right to an abortion, but there is no evidence that the Autism Speaks organization, the government, or other organizations that fund genetic research into a definitive genetic prenatal test, supports eugenics.

All the other points ASAN brings up are reasonable points for criticism in a protest, but there is no basis of fact in the contention that the Autism Speaks organization supports eugenics. The government in the US and organizations around the world supports the same research into genetic research into the causes of autism, and a potential definitive prenatal test for Autism; the ultimate goal is to eventually provide the ability for the citizens that are autistic to have a more fulfilling life, without the more disabling symptoms of Autism.

People would likely pay more attention to the protest as a constructive effort, if the protests were based on facts, not a statement that has no basis in fact.

Current genetic research that is being done into regressive Autism and bowel disorders suggest that the two are associated and may influence impairments seen in the 87% of children studied to have bowel problems with regressive autism. These are the real, current results of genetic research into the stated goal of a cure for Autism. A bowel disorder can be potentially cured, and the resulting impairments associated with Autism can be potentially tempered or corrected through that potential cure. The Autistic person remains, and has the potential for a much more fulfilling life.

If one is concerned over selective abortion, that is a separate political area, that can be addressed, to fight against that specific concern, however it is not fair to autistic children that the potential for interventions, that may come as a result of genetic research into the genetic causes for the developmental impairments associated with Autism are seen as an agenda for Eugenics, when the intention is clearly to make life better for those autistic children.

When the individuals that are walking in support of those individuals that they love as their autistic friends and family, the first thing they are likely to do when they see a sign that potentially states a fallacious statement like Autism Speaks suports Eugenics, is to look away and never see the signs that have basis in fact, like the need for more community support, support for adults through the life span.

The constructive conversation that the individual is holding between Autism Speaks and himself on the Aspies for Freedom Website, presently described on this forum, is one for respectful communication, that has the potential to effect change for the positive. There is absolutley no mention of the word Eugenics in that conversation, because it is aimed at constructive results.

There are many areas of constructive concern where Autism Speaks could change for the better, and ASAN bring some of them up here in the protest. But, ASAN, I think, could also use some constructive criticism, in using the phrase Autism Speaks supports Eugenics, because that phrase is not based in fact and I think dilutes the rest of the constructive message.

I am attempting to provide a voice for the children with regressive Autism that have a bowel disorder that may be impairing their communication development, that may be improved because of genetic research into the causes of Autism. That may be nowhere on the radar for ASAN, and this specific protest. "Nothing about us without us", should include the voices of those Autistic children as well.

The Parents and friends of children experiencing regressive autism and bowel disorders, are already speaking for their children in the walk that will continue to raise funds for this type of genetic research. They knew what the problems their children were experiencing long before the current genetic research into the issue identified potential causes, that may result in potential interventions.

Why Autism Speaks Does Not Speak for Us--ASAN Ohio

It may be nicer to think that Autism Speaks has nothing to do with eugenics, but the reality is decidedly less clear on that score.

Eradicating the disabling effects of Autism, that their grandchild experienced, in the loss of his language, is not eradicating the world of individuals like their grandchild, it is providing them the potential opportunity to to fulfill their potential in the future. Eugenics is the suggestion that there is an organized movement to rid the world of individuals; there is an organized effort to make the developmental disabilities with Autism, go away, not the autistic child.

If she had been the head of the Epilepsy foundation, and had suggested that we are going to erradicate Epilepsy from the face of the earth, it would be ludricous to suggest that this was any suggestion of Eugenics, because the individuals with Epilepsy would still be alive.

That said it is no more likely that we will erradicate Epilepsy than we will Autism from the face of the earth, because the variations of that disorder, are almost as complex as Autism. Autism is considered a neurological disorder by medical science, and Autism Speaks is not the only organization that is trying to temper and correct and prevent the disabling symptoms of neurological disorders. If they could they would erradicate them from the face of the earth, but neurological disorders like Parkinsons, and Epilepsy, stay with us; disabling symptoms tempered and corrected through years of research into these neurological disorders.

Regarding Watson, Autism Speaks is certainly not responsible for another individuals mistakes or opinions; the guy said something extremely politically incorrect; simply not acceptable, and suffered the consequences of his actions. It's not likely, I think for every individual human being that is associated with Autism Speaks, not to hold an unsavory opinion, or make a mistake.

There is absolutely no evidence that Autism Speaks is trying to prevent any Autistic person from being born, that is what Ari Neeman has specifically identified as his concern in pre-natal testing, that it will be used for abortion purposes; this is what he refers to in his concerns of Eugenics.

This has never been a stated goal of autism speaks; their goal is to cure, prevent, treat the disabling symptoms of autism as a disorder. That has nothing to do with eliminating anyone from the face of the earth; if anything it may give individuals in the future born with Autism the opportunity to have a life, with less impairment from the disabling effects of developmental disabilities associated with Autism.

And as stated before, if a definitive prenatal test is ever developed, if some gain access to use it for purposes of legal abortion, that is between them and the legal system, as long as it is legal the government, Autism Speaks, nor any other organization has legal influence to deter it.

It has been reported that 25% of all pregnancies end in abortion, so it is likely that among the rest of those potential births there are autistic individuals among those statistics. It's legal so we have to abide by the law and accept it, whether or not our morals or ethics match the legality of the reality.

If and when a definitive prenatal genetic test is provided by the research for it supported by the government, autism speaks, and other organizations, that is used for intervention, the tempering and correction of developmental disabilities, that will be good time to question it's use and protest it, if one feels it is morally or ethically wrong to make it available to the public, but it will be a protest to the government, not to autism speaks or any other private organization; they have no control, in this aspect of the issue.

And finally when the government states combatting Autism in hopes of curing the disorder; I haven't seen the general public suggest that they are combatting autistic children, I would imagine that would be the way it might be taken by some, if Autism Speaks came up with a slogan like that. It is clear that the government wants to help autistic children, not to eliminate their existence as a human being. It is the same with Autism Speaks as an organization; there is no evidence to the contrary.

This is an organization that has likened Autism to CANCER AND AIDS, told an NT popular culture that Autism will bankrupt them and destroy their marriages,

and, despite their cutesy moniker,

employs not a single AUTISTIC INDIVIDUAL on their extremely-well paid board of directors.

This is, of course, aside from disallowing *Autistic people* from speaking at meetings, and advocating to this day CHEMICAL CHELATION OF CHILDREN.

The Nazi regime has nothing on this organization.

On the Cancer and Aids, Autism Speaks quoted statistics on numbers of prevalence, not a comparison of severity of the these conditions, taken individually and compared to each other. The statisitics are no secret, the CDC provides the research for the numbers from which they were derived. These statistics are commonly referred to by other organizations that provide awareness for Autism.

It's fairly stressful to be a caregiver for any disabled individual, it breaks up marriages and bankrupts people, that's no secret. In general stress can do that to one's finances and personal relationships. It's not the child's fault though, it is a result of the disability, that requires extreme care, and often results in a great deal of stress. It's a harsh reality for some, that was described in an unpalatable "I am Autism Video", that has long since been abandoned by Autism Speaks.

Not allowing an Autistic person to speak at a function seems inconsiderate to me. Sounds like a mistake by whomever was fielding questions. Mistakes do happen, but there is no evidence that the organization holds such a policy. But if it didn't happen again, it's a pretty good sign that there is quality control within the organization.

Autism Speaks, was a catchy phrase, to suggest they were going to speak for individuals with Autism that could not speak at all, like the grandchild of the individual that founded the organization. It wasn't related to a promise that they would employee autistic individuals to run the organization, but it is good that they have an extremely vocal high functioning autistic person providing input now, regardless if they are a paid employee. Additional autistic individuals involved in the organization in the future, would be an excellent improvement.

Comparing Autism Speaks to a Nazi Regime, with no evidence that they have done anything like any Nazi regime, is an interesting analogy. If you can provide it I would be interested in seeing it.

Autism Speaks has never advocated the use of Chemical Chelation of Children other than FDA approved purposes; chelation has never been approved by the FDA as a therapy for Autism; it is not allowed in this country unless a child is found tested positive for heavy metal poisioning. At that point it is a cost benefit determination by the attending physician.

When a possible heavy metal link to Autism was suggested years ago, there was a potential for research on this issue, but the FDA did not consider the research to meet safety requirements, so they would not allow it, and no research was done. This information is available on the Autism Speak Website.

If you can provide evidence that autism speaks advocates chemical chelation for Autism, not heavy metal poisioning, as it is approved by the FDA, I would be interested in seeing that evidence.

Autism Speaks only "abandoned" the "I Am Autism" video after people protested it, and then only by removing it from the web. The organization has never, to my knowledge, issued a formal apology for that video, or from any of the other harmful media representations which it has put out.

There are actually solid statistics which show that parents of disabled children aren't necessarily more likely to get divorced; remember, the divorce rate in the U.S. is around 50%. But I don't believe that the organization is concerned with solid statistics as much as scare-mongering. I find ahogday's explanation of why Autism Speaks has compared autism to cancer/AIDS/etc. pretty weak. Sure, that may be the nugget of fact lying behind their statements--but the actual statements was in the "I Am Autism" video was "I work faster than pediatric AIDS, cancer, and diabetes combined." That's pretty ambiguous, scare-mongering language. If I knew nothing about autism upon watching that video, that statement would lead me to believe that autism kills faster than all of those diseases, which is obviously not true. It's inaccurate. Moreover, they've used cancer and whatnot in other promotional materials. One ad compared the odds of having an autistic child to the odds of having your child in a fatal car accident. The fact is, by juxtaposing autism with all of these other things, Autism Speaks is implicitly comparing them. This is a common rhetorical tool, and it is intentional.

I don't know the Wrights. I just know what they're putting out there to the public, which I find deplorable. I don't pretend to read their minds; I'm just judging based on what they have said and done. I categorically do not think they should have the attitude of "we want our grandson back." (They have said this.) Their grandson is here. He's not dead. They may still need to figure out how to communicate with him, but he is very much alive.

Speech is not the only way to communicate. Written language, pictures, sign language...there are lots of ways to communicate. Many autistic people who struggle with speech are able to use one or more of these methods. So I do not think that an autism organization ought to be privileging speech. And just because a person isn't speaking doesn't mean they aren't communicating.

Re: vaccines and chelation: Autism Speaks' list of "recommended reading" on their website currently includes several anti-vaccine books, including "Age of Autism" and a book by Jenny McCarthy and Andrew Wakefield. They recently sponsored a conference at which Wakefield spoke. And autistic kids in this country are being subjected to chelation inappropriately, regardless of what the FDA says. Autism Speaks may not be explicitly endorsing this, but they're not doing a whole lot to stop it, either.

I will never understand the need to wish away the organization's less savory aspects.

Thank you for your information, srriv345.

There are several points that I'd like to address regarding Autism Speaks when I have time, but one of them will not wait.

Autism Speaks has endorsed the anti-vaccine movement and the claim that autism has been caused by vaccines. They have been backing away from that position in light of evidence that Wakefield is a fraud, that science disagrees with them, and (most importantly) since the paying public is less comfortable with the vaccine-causes-autism claim.

Autism Speaks claims to be in favor of scientific research, but their support for the anti-vaccine/vaccine-causes-autism crowd utterly undermines any claim they have to be a science-based or science-friendly organization. They have shown themselves to be irresponsible, scientifically ignorant, opportunistic, and untrustworthy.

Autism Speak's history on this one subject is more than enough for me to blackball the organization and recommend against it.

I am a scientist and have no tolerance for those who have no respect for integrity - scientific, intellectual, or personal.

You are seeing concerns here, I'm not seeing; I see most of it as difference of opinion; depending on what one expects to see. My suggestion is higher divorce rates are caused by the stress of caregiving not the child, and recent research backs that up. I stated it wasn't the child's fault, I agree that the disability itself does not cause higher divorce rates, it's not the reason cited in recent research.

Autism Speaks provides information on some books that have controversial contents, but they clearly state they don't endorse the content in the books; that's not too unusual for an informational website. Their mission is to provide information, and they clearly state they support vaccination; I would be concerned if they supported a treatment that was not approved by the FDA, that seemed to be the suggestion earlier, that I wanted to see evidence for, which I knew could not possibly be true, because of legal ramifications of such support.

What the Wright's said about their grandchild was a personal opinion on an emotional subject for them; as a parent that had a disabled child, it's not a place I would go to suggest the intention is anything but sincere in that comment.

I see improvements that can be made, but certainly no organization that rises above the standard for a NAZI regime, as was suggested before.

Autism Speaks could do many things better, to me that is a constructive direction, that some are taking. I see what you see as major issues as minor issues, most of which no longer exist; a difference of opinion. What I see as the major issue is how the organization improves in the future, since they seem to suggest they want to represent the entire autistic community. That part remains to be seen.

In the past a lot of government officals were not convicted felons, Worldcom and Enron were major corportions, and Wakefield was certified by his profession.

Also research grants were written to find the genetic cause of autism. It never happened, From the recent science it will never happen. The last odds I heard were 100 to 1, the same as random abortions. Over a hundred genetic markers that might, sometimes, lead to autism, maybe. The twins study put that down, as twins do not share autism, with identical genetics.

There is an Internet Law that states that people are called NAZIs after you lose the argument.

No test for autism, now, or likely ever.

If it did exist, please explain to the Court what Status you think you have to object to the legal behavior of others.

You protest Science because you might not like what they find?

You protest one out of the hundreds of organizations that fund autism research?

"One man's freedom ends where another man's begins." So who is coming out against Freedom?

Disrupting the legal behavior of anyone the burden of proof is on you.

Politics by spreading fear is called terrorism. You are very close to being guilty of Inciting Terrorism under the current law.

If someone throws a rock at those NAZIs we know where the chickens come home to roost.

ASAN has a long history of picking on grandmothers.

Calling people NAZIs is Hate Speech, used to incite Violence.

So the best you can do is form a Hate Group and Incite Terror in the streets for the goal of Extortion?

You are one act away from getting a lot of free room and board.

I do think that it is perfectly natural to want to protest against autism speaks. As someone on the autistic spectrum who is happy being me, and does not want to be NT, I feel threatened when someone comes along and says that they want to "cure" me. And it is important to distinguish the fact that their goal is to cure the autism itself and not just to treat co-morbids and manage symptoms.

When it comes to calling them NAZIs and saying that they support eugenics, I think that this is porobably unfair. I certainly don't think that they have anything to do with national socialism. And I'll give them the benefit of the doubt and assume that they don't think that all autistic children should be aborted, but many autistic children being aborted may be an indirect result of the research that they support (although this outcome is probably unlikely, it's posibillity is still quite scary.)

If it is true that they don't employ a single autistic person, I'm afraid that I think that is inexcusable. They describe themselves as an advocacy organisation, but I don't see how they can advocate on behalf of autistic people without a healthy and frequent dialogue with them, facillitating their understanding of things from the autistic person's point of view.

I have no reason to believe that Autism Speaks wants to do anything other than help people who are affected by autism, I just think that they are very geared towards people with LFA who provide alot of challenges to the people around them. (And their support for people in these situations is a good thing.)

But it seems to me that the undertone is that autism is a plague that must be purged from the earth. And I don't benefit from anything that they are doing. If I were to sum up how I feel about them, it would threatened and misunderstood.

Inventor - Who are you raging at?

Autism Speaks position, even with the resistance of those that support them, including the daughter of the founder, that still suspect that vaccines were the cause of the grandson's regressive autism, clearly support the use of Vaccines because at this point, thirmesol and Vaccines have been disproven as a cause of Autism.

The research that Autism Speaks continues, searches for subsets of individuals that may be more succeptible to negative effects from vaccines than others. It's a controversial area that iniated the resignation of people from their science board, but the research continues, and is supported by research scientists as valuable scientific research, including the previous director of the National Insitute of Health, Dr. Bernadine Healy.

The question in Autism Speaks support of it, is it valuable enough research to warrant the limited research funds of Autism Speaks. Their decision was it is. Some agree it was the correct decision some don't.

Vaccines save a great number of lives, if there are indeed subgroups of individuals with ASD's that are more vulnerable to the negative impacts of vaccines, the question becomes one of cost/benefit of continued research.

Are the potential issues associated with vaccines that subsets of individuals may have in relationship to Autism, worthy of pursuit in research, or does the risk of potential fears over vaccines, outweigh that concern?

So in effect do the potential health concerns of less than 1 percent of the population outweigh the potential fears on vaccines of the rest of the population, if the research continues, and correlations are found with vaccines and problems with specific subsets of individuals who may be found succeptible to these problems?

It's a little like the prenatal test concern. The advancements toward it may lead to positive results that the majority of the population in the US support, but on the other hand others may use those positive results for actions that a minority in the general population, in the US, see as an objectional reason to continue with the research.

In the case of continued vaccine research, if correlations of problems in subsets of groups of individuals, is found to be a potential harmful correlation, there is the fear that others may use this information to avoid vaccination, as they did before the general causation factor into autism was disproven, as some continue to do as that fear lingers.

The concerns or benefits seen by the many normally outweigh the concerns and benefits of the few, in policy action; it appears no different here, than would be normally expected, in other controversial issues like this.

You know, aghogday, you often sound like you are a branch of the Autism Speaks PR machine.

I know that you have claimed to have no association with them. I do not think they would say things differently from you, however. They must truly be delighted with your efforts on their behalf.

Yet Autism Speaks used to support Wakefield and the anti-vaccine nutters, Autism Speaks still tolerates them and provides tacit support (recommended readings, speaking opportunities) to them, and I think that the only reason that Autism Speaks has backed away from them is out of concern for financial repercussions, not out of scientific integrity.


Again, I think this is window dressing for their continuing attempts to attack vaccine use through questionable research. I think you still have the same nuts in the organization driving scientific research funding according to their own woo beliefs.

Bernadine Healy, the former director of the NIH, is a respected member of the scientific community. It's not likely that she would support a specific effort like this in determining if subsets of individuals were more succeptible to the effects of vaccinations than others, if it did not have scientific merit.

If I have stated anything as fact that you have evidence to refute, I welcome that. I support constructive effort in all things in life, and believe there is potential for the Autism Speaks organization to do greater things for Autistic people in the future. Some want to be part of the input process in providing that improvement; I see that as encouraging, from a humanistic perspective; not strictly an autistic one.

If the organization ever broke the law, in their legal requirements of a charitable organization they would face the consequences the same as any other organization. There is not even a feather of evidence of that; the differences in opinion that some have are ideological in basis; I like concrete evidence available that either supports or refutes the ideologies presented.

I'm not part of any organization, look back at my postings if you like, I have spent countless paragraphs in the past discussing the merits of the need of self esteem building support provided by ASAN for higher functioning autistic people with Ci; my opinions are based on what I see as reason, but I don't expect everyone else to see the same reason that I do.

I have also criticized the actions of Autism Speaks, that I have seen as negative, however I have seen no evidence of malicious intent against any autistic individual, PR missteps yes, but no malicious intent.

On the other hand, there is some ill intent that has been expressed here against the Autism Speaks organization, some of it through misinformation, that I personally don't see as warranted. I attempt to provide evidence to the contrary, for a better view of the organization as a whole.

I think it is a natural tendency for humans to seek a common enemy to bind groups together; I find it encouraging that the young man who is seeking understanding of the organization, in a much more anti-autism speaks environment, is brave enough to do that, among his peers. My voice means nothing, it's only a fact machine, whereas his voice could make a real difference, if it influences his peers for a constructive effort to improve the organization.

Particularly encouraging was the poster in that thread that brought up specific improvements in the lives of Autistic Adults, that Autism Speaks could provide to help Autistic adults. Will any of it come to fruition? I don't know. What I do know though, is if the needs and requests for constructive improvement are not presented there is no chance at all for improvement in those specific areas in the organization.

If one had the ability to destroy the organization, which won't happen, legally, unless the organization fails by it's own actions, there is no potential at all, for the funds collected by this organization to help autistic people. I've seen that opinion voiced by a handful of people here, but it is common on the AFF site.

I can see that it binds people together, but I can also see where it may limit the potential for positive improvement, specific to autistic adults, in the Autism Speaks organization.

The young man may not gain success in his effort, this time, but it is encouragement to me that Autistic people may be moving toward positive change, with regard to constructive results for Autistic Adults, in the Autism Speaks organization.

Well just be glad you don't live in Canada, Mental Aslyums are still opened over there, and I know sooner or later, if no cure for Autism is avalible by the time our Nation goes into a second Great Depression, then those Mental Aslyums will be opened again in our neck of the woods and any refusal of treatment will result being their last being alive, cuts down the human population and apparently gives NTs the upper hand...