Lying in your face

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yeah i mean handing off a project to china was just a way to spite us. i know people always want to stop the fight but i say keep going. our flaming got them to back down, now we need to take it all the way.

Providing hope to the families of individuals with autism is part of their mission statement so that part about serving the interests of parents with autism is verifiably true.

There are few reported autistic individuals reported that are actually part of the organization, but on the other hand, there don't appear to be many outspoken autistic people, that care to be part of the organization, or any reported that have actually applied for a postion and complained about not being hired. Not much autism speaks can do, if autistic people with the needed abilities, don't want to apply or be part of the organization.

There was an autistic individual that was part of an online autism advocacy group that was banned from that group because they received a paycheck from the autism speaks organization.

And, another widely respected autistic individual associated with autism speaks, that was part of the same advocacy organization that was tagged as an individual that no one should listen to because they discussed their involvement with research about a potential therapy for autism.

If you want detailed information and references, I can provide them privately, but it has been asked that those details not be discussed here in this forum.

The facts don't support the assertion autistic individuals are being shuttered out of the autism speaks advocacy organization, conversely there are a few facts that support that autistic individuals are being shuttered out of at least one other autism advocacy organization because they are associated with the autism speaks organization and there is no evidence any qualified autistic person has applied for a position at autism speaks and been turned down.

i dont doubt that many things you claim are true.your very informed and a very hard person to prove wrong.and most definatley dont agree with those who blindly bash autism speaks.but i still think taking autism speaks mission statement and or any published material is not something i would trust.im open minded but skeptical about A.S

Well i mean just because one person against autism speaks is bad doesn't mean we all are. And I wouldn't ever take anything in pr as granted, for any organization. You always have to look at the track record for reliable info. Autism speaks track record is mostly garbage with a few smears. The only reason why I even looked at autism speaks a few months ago was that hacking autism seemed like a bright idea to me.

The sequencing of human genomes for autism has been going on since the Autism genetic resource exchange was initated in 1997, seven years before Autism Speaks started; it is also funded by the National Institute of Mental Health.

BGIAmericas corporation is a private company that happens to have it's beginnings in China, that is continuing that work for the future.

Autism Speaks hopes the information helps people that have autism, not to hurt them.

If it were to lead to the prevention of GI illnesses in children, that would certainly be a great thing for those children, far from an effort at spite against autistic individuals.

Regardless if this company was the one doing the sequencing or another company was doing it, based in France or South Korea, the fact is that genomes from autistic people have been sequenced 14 years now, to provide a genome library for autism and that work is continuing.

The Chinese Government is not an issue here, at all. Information from the Autism Genetic Research Exchange has already been available on an international basis, for approved autism research for 14 years, now. So if the Chinese government had a need for it, for research, they could have got it over a decade ago.

That said, if you can want to see change in the organization, and don't agree they should have a role in this research you could provide that criticism to them, but even if you could convince them to stop funding the project, the national institute of mental health would just find someone else to help fund the project, or seek additional funding from the US government, and the BGI company would continue the work that is being done.

If you can't provide any actual evidence of wrong doing that the organization is presently doing, then there is nothing rational to flame the organization for.

If you flame the organization for nothing, people can see through it, and it makes the position of the organization look more respected than the effort at flaming, for those that can easily research the facts.

However, if you see potential in constructive improvement within the organization it is worth the time and effort.

If you don't see any value at all in the organization, it's better to spend your time in a cause you see as worthy.

This stuff about the parents against vaccines is a battle separate from Autism speaks for individuals that are holding a conversation on a support site.

That's a worthy cause too, if you can provide facts to support an argument of why the risk of not vaccinating outweighs any risk of vaccination.

Autism Speaks might have the best advice though, for them to discuss it with their physician, so they can provide all the medical evidence why vaccination is the best course of action.

If it were not for research, the life expectancy in the US would still be around 50. Every medical advance in immunization, and antibiotics has come as a result of research, and the prevention of communicable disease, along with proper sanitation are the reasons that many people are alive walking the streets.

That said. I support research, and trust that many of those in the actual research field do have autistic traits, and are there to provide results, not cloud the truth. It is controlled by peer review, so there are no secrets in peer reviewed research.

Someone has to fund the research as they do with other causes, it is good that people support it.

The mission of autism speaks as I outlined is fairly simple: research, awareness, and hope to those with autism who struggle with autism and their families.

For those that have no struggles with autism or are not concerned that it can disable individuals, it is not likely an issue that they will concern themselves with.

I see the problem that more direct support needs to be given to autistic individuals, in the way of financial support, but until that becomes part of autism speaks mission, we can't really expect them to focus on a goal that is not part of that mission.

I've seen the mistakes in PR autism speaks has made that have offended some autistic folks, but the fact is that mistakes do happen, and as long as an organization is willing to correct them, I'm not sure what else it is that they can do.

I'm willing to listen to any objective things that the organization is doing that is wrong that might hurt autistic people, but the offenses of the past, for the most part seem to be resolved, and there isn't anything new that is of real significant concern, that I have seen.

The letter about Penn State establishes nothing new that has not already been understood since 2004, about the organization, and this thing about a company based in China sequencing genomes, is just a more effective continuation of the same project that has been ongoing for 14 years, well before autism speaks came on to the scene.

All that said, I would not financially support them, I would rather focus on the other organizations that help autistic people directly that are underfunded. That is where I see the greatest current need.

But, I see the need also, in what autism speaks does per their mission statement; some people make that the priority they fund, and I can understand the objective reasons for it.

To me it is a matter of analyzing the facts about what each organization does that is good and choosing which one an individual believes is the one that needs their support and is worthy of their support.

The reasons why someone would want to attack an organization, for no actual current offenses that can be proven, could be determined by many things, including basic human nature.

It is always good to maintain skepticism. I too am a skeptic and understand the sociological motivations behind group think; people with Autism are as succeptible to it as anyone else, so I use google to research most things I have a question about before I gain a solid opinion on something.

There is always the potential that any organization is part of a horrible secret, Penn State is a perfect example of this; Autism Speaks is far beyond reproach, and they deserve the same criticism as any other organization when they make mistakes.

aghogday wrote:

But what are the reasons for this? If Autism Speaks really did successfully speak for Autistic people who struggle to communicate, you would expect many Autistic people wanting to join in with their message saying "please cure me I'm suffering" and I'm seeing no evidence of this. It is true though that there is a bias here in the sense that those with more abillity to communicate are less likely to want to be cured. But the absolute dearth of Autistic people who share Autism Speaks's mission suggests to me that they aren't speaking for us at all.

aghogday wrote:


The main bone of contention for me is the fact that they seek a cure for Autism, this is of significant concern for two reasons. The first one being that no such thing exists, the second being that if it did exist, it would amount to nothing more than some heinous method of getting us to conform to NT social standards. Which means that it represents either a threat or a meaningless ploy to plunder the money of gullible NT's.

@aghogday.very good response your information level is above mine so i cant realy pick apart the post factualy.i hope i didnt give the impression that i would compare autism with penn state.autism is in the catagory of those who think right is wrong and wrong is right.confused,scared and desparate parents.i would never compare A.S with the malicious depravity of those who hurt or turned a blind eye to that type of violence against children(young adults actualy)

@aghogday.very good response your information level is above mine so i cant realy pick apart the post factualy.i hope i didnt give the impression that i would compare autism with penn state.autism is in the catagory of those who think right is wrong and wrong is right.confused,scared and desparate parents.i would never compare A.S with the malicious depravity of those who hurt or turned a blind eye to that type of violence against children(young adults actualy)

I've seen quite a few over time, actually, but they don't stay around. And there is no place for them to go. They don't exactly get embraced by the rest, think about it.

To be fair, you can usually get them to agree that if co-morbids A, B and C could be swiped away, they could live with the ASD, but sometimes those lines are difficult to draw. And I'm not convinced we can solve the co-morbids without looking at the whole package.

I have no answer, just pointing out that just because you don't hear a voice, does not mean it isn't there.

i'd have to admit i would be ok with having attention disorder, depression, and sleep problems taken care of.

No, I didn't think you were comparing the negative aspects of that tragedy with the negative aspects of Autism Speaks. My point there was that even though the Penn State Football organization was respected at the highest levels, that a horrible offense was hidden there. So, regardless of how respected an organization is, there is always the potential of problems, that must be identified and corrected.

Oversight is required in any organization, and there are many watch dog organizations whose direct responsibility is to monitor all charitable organizations in the US, for any nefarious activity.

Most of the perceived offenses of autism speaks, have been offenses to this point, in differences in perceptions among people with different viewpoints. As long as different viewpoints are acknowledged, respected, and adjustments are attempted for middle ground, it is about as reasonable response as one could expect.

The idea, though that an organization's mission, and by mission, I mean the research that autism speaks is doing in attempt to help those that do truly struggle with autism, in an attempt to find the causes to cure and/or prevent the co-morbid conditions and communication problems, should change to direct support, because less than 5 percent of autistics have voiced this opinion, is not a realistic expectation.

The reason is simple; because the view that autism research is not vital for this purpose is currently actually voiced at most by several thousand people in the entire world, for the most part scattered on internet sites. Whom, many of, are vehemently opposed to the Autism Speaks organization, and likely few to none of these provide any financial support to autism speaks.

Whereas, there are millions in the world that support medical research for autism, and all other disorders, in hopes that individuals will have a greater opportunity to fulfill their potential in life. Among these individual are those that support Autism Speaks mission for research, both by viewpoint and finanical support.

To me this is a simple math equation. There is no potential battle plan that is going to work to change the research dollars into direct aid for autistic people, their mission is solid and respected by most in the world.

Perhaps the current 4 percent will grow to 10 percent if the organization receives more funding in the future, but the hopes that the organization will receive less support in the future, eliminates any possibility for this change. They are going to do what they can within reason that still allows them to meet their mission.

And per my opinion, the direct support is what autistic people who are living now need, but this is a mission that belongs to other organizations and the government, not autism speaks. The government provides the overwhelming majority of direct financial aid; there is no way private organizations can ever come close to meeting this financial demand.

And the demand for financial aid is so huge for the hundreds of thousands of autistic people that do need it, it is questionable whether or not the government will continue to be able to provide the financial support that is provided now.

This is the reason the research is so important. So, more individuals may have the opportunity for independence in life, and not be as reliant on government services, that could potentially disappear in the future.

The government clearly understands this; it is why the national institute of mental health, the national institute of health, and the CDC, and many other government agencies are in partnership in funding and cooperation with Autism speaks, in the effort to pursue this research.

It would be unrealistic, to think that if Autism Speaks goes away the research would go away, if one hates the research; the government has been involved in this research long before Autism Speaks came along. Autism Speaks just took over the role of other private organizations that were already partnered in this effort with the government.

If Autism Speaks were to suddenly fail, other private charitable research organizations would rise up to fill the void, quickly.

Autism Speaks has dollars for funding because people want to fund research; all autism speaks is, is a structure to collect the money. Without autism speaks, all is needed is an alternate structure to collect the same dollars that people have the same specific intention to give to autism research.

These avenues already exist. There are individuals that bypass autism speaks, already, and give directly to autism research, sometimes as much as a million or more dollars for one private individual.

And beyond this there are hundreds of other research organizations for profit and non-profit world wide, that are researching autism, with or without the help of autism speaks and the US government. Some of these organizations are the ones, currently, actively pursuing the development of a pre-natal screening test for Autism.

Another long and wordy post, but put in perspective with the full reality of autism and the rest of the world, autism speaks is a significant player, that fulfills a specific role in it's mission, but their role in that mission is tiny in comparison to all the other organizations in the world that are working together to provide the same mission.

Their specific infractions have been perceptions of their PR and marketing campaign. Considering the founder was president of NBC, it's not suprising that they focus as much as they do in this area. It's a good thing too because they are professional enough to understand when a change is needed to accommodate criticism.

@ahogday i don't give support to an organization that is against my views. it doesn't matter what they say, it matters what they do. actions speak louder than words.

DW_a_mom Wrote:

I don't see why there is no place for them to go, I'm sure they would be welcome on this site. I personally would totally respect anyone who wants to be cured, although I personally do not. I would certainly embrace them as part of the Autistic community, and I'm sure that they do exist. But the overwhelming majority of people who support a cure for Autism seem to be NT parents of Autistic children and not Autistic people themselves.

When it comes to the treatment of co-morbids, it is important to to look at how they relate to one another, and to investigate the possibillity that they all derive from the same source. But the converse is also true, in that they should also be looked at as isolated from one another and the possibility that they are not related, or only loosely related should also be investigated. These lines are difficult to draw, but a greater attempt should be made to draw them; taking a strictly hollistic view, and treating all of them as part of Autism, is poor practise. Particularly as Autism is just a subjective label, and isn't defined as something existing within the person.

The use of the term "co-morbids" makes the assumption that Autism is a defined condition present within the individual and that this is the primary condition. And that the "co-morbids" are the secondary or tertiary affects of the primary condition or root cause, this is a false assumption. It is just a checklist of subjectively observed behavoiral traits and an "NT" conceptual creation. Worse, the term "co-morbids" when used to describe debillitating issues of Autistic people, implies not only that Autism is a defined condition present within the individual, but also that it is a disease. So a whole host of unfounded assumptions lie behind the "research" of Autism Speaks, this is quackery at best, purposeful deception for making money at worst.

I think you hit the nail on the head above. In autism speaks mission statement they make it clear that their mission is to provide hope to those who struggle with autism.

They don't have a mission to provide hope to those that don't struggle with autism. The struggle is the co-morbids, the loss in ability or ability to speak, the GI issues, sleep issues, self injurous behavior, etc.

If they were to be able to eliminate all those symptoms from a child's life, one might end up with a child with autistic traits, potentially like many of the individuals that may post on this website, not necessarily a child that might depend on society for the rest of their life for support.

No, it's not a disease, but "cure" is a simple word that the general public can understand that want children to be cured of their inability to speak, GI issues, sleeping problems, or self injurous behavior, among the other struggles associated with autism. These are the problems the parents want to see go away, not their autistic children, or who they are as a person.

It's not an empty promise that research might lead to remedies to help these conditions, and it is certainly a hope that continues for parents that have children with autism or who would like to have more children

Non-Verbal autistics are rarely heard in the public arena, not even on support sites, which means in effect they don't have a voice that is heard as a group.

Autism speaks was founded and motivated by that premise.

The individuals that have learning disabilities that don't have the good grammar and spelling abilities often characterized as part of the 5 percent of autistics, identified who have Aspergers, are almost immediately ostracized when they come to a support site for autism.

These sites are normally populated by that identified 5 percent, characterized as having good grammar and spelling abilities, and all with the ability to speak..

The sad reality is, those other 95 percent of autistic individuals many of which who do have developmental disabilities including problems with learning, are ostracized by some of the individuals that complain that others have ostracized them in society, because of their differences.

I've seen a few people try to communicate here with developmental disabilities related to grammar and spelling, but not many last, and there seems to be hardly any recognition that autistic people could possibly have grammar and spelling problems caused by developmental disabilities, even though 41 percent of individuals with ASD's are identified by the CDC in the US as having developmental disabilities associated with learning.

I would imagine that there are a percentage of those that read what is going on here, but they could easily be terrified to try to communicate here, when they see what happens to a person without good grammar and spelling.

I've heard horrible comments given to other people by some, like those with imperfect grammar and spelling are doing something bad on purpose, such as it hurts to have to look at another person's spelling and grammar mistakes, if you want to be taken seriously learn some grammar, pro-tip grammar is your friend, and many other comments that belittle their grammar and spelling abilities.

I've tried to point out the statistics that prove these are real problems that many people with ASD's have, but there is more comfort for some that autism might be the next evolutionary step for mankind.

How in the world, could they possibly speak for these autistic children that have no voice, when spelling errors, is enough for them to be turned away from a support site for Autism?

There is better awareness that is needed about these 5 percent of individuals with autism that are identified with Aspergers that are highly skilled in some areas of life, and the fact that some do successfully adapt to life well, but at the same time there seems to be some need for greater awareness among this same 5 percent identified as having Aspergers, of the reality of life for some of the other 95 percent of individuals identified with ASD's.

There was a member here in the past that was a pretty good example of this, he pointed out he had a developmental disability related to grammar, that was verifiable because he was part of a public organization for disabled individuals.

It was obvious that it affected his grammar skills, but hardly anyone was patient enough to try to understand him, highly ostracized on other sites, and this site at times, but his determination continues on other sites, to do the best he can with the skills he has.

One can multiply that by 10 for what it's like for parents who struggle to understand their children that are non-verbal for perspective. The member with the developmental disability was identified as HFA, not a non-verbal individual.

I had a problem understanding him at first, but took the time to try to understand him. That was pretty much his point the whole time he was here, trying to let people know that people like him, are the voices rarely heard or accepted, in what is called the autistic community.

They are the driving motivation behind the existence of Autism Speaks. Often the only place they are heard is within their families, Autism Speaks seeks to change that through the research they support.

I've heard the mantra here over and over that Autistic people who speak can speak better for non-verbal autistics than Autism Speaks, and even at times that they can speak better for the children than the children's parents can. And, that Autism Speaks has no right to the name "Autism Speaks" and no right to suggest they can speak for autistics.

The effort and desire to communicate with one's child that is non-verbal, is certainly not a qualification an Autistic person who can speak has over a parent.

The effort and the desire to communicate with the child is the major qualification needed; if differences in grammar aren't normally tolerated or even understood as possible by some of the autistic people that are the most outspoken ones, it's not likely the non-verbal ones would fare any better in communication with them.

Vermont Savage understands this better, than probably any of us here. He was attacked for his grammar by a few people when he first got here, but was strong willed enough to hang in there and give people the time to understand who he was, and what made him a good person to communicate with.

Not surprisingly, he was one of the few that made the effort to understand the other individual that I mentioned, he didn't give up trying to understand him, and is aware of the view from the this group that is rarely heard from that are autistic.

This isn't suggesting that higher functioning autistics have a disdain for autistics with developmental disabilities associated with learning, it seems obvious to me that there is this perception among some that they are the rarest of autistic individuals, where in reality there are many of these individuals; as the 41 precent of all ASD's, per the CDC statistic, suggets.

I agree actions speak louder than words. Part of the clear actions of autism speaks is genetic research; if one doesn't agree with that, I don't see it as an organization that one should support.