Curious: What exactly do we hate about Autism Speaks?

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Actually, you were the only individual here that dared to support anything that autism speaks did, when I first came to this website, not concerned of what others might think of you, because you spoke the facts.

This was my first impression of your posts when I came here.:


http://www.wrongplanet.net/posts141178-start15.html



If I go on incessantly about the same facts, it could be a sign that I am autistic. I feel the need to offer no apologies for that, at least not here, a support site for autistics, unless I personally offend someone.

You felt like you had a right to express the objective facts about autism speaks in the past, I'm sorry if you object to my right to express the objective facts, now, to clarify misconceptions; if I present a fact that is incorrect, I welcome the correction.

I have no association with autism speaks; you were the one in the thread above that provided my first introduction to the name autism speaks, when I first visited the site In November 2010. Before I came here, I never realized the organization existed.

It took along time before I expressed any opinion on the organization. I had time on my hands, so I made it a special interest to learn why you were the only one expressing support for that organization here.

I suppose I serve the same purpose for other new individuals that come here now, as you did for me when I came here a year ago, just a different perspective based on experience.

I don't like to see autistics or autistic parents bullied, not even the rich one's that start organizations to help their autistic relatives. As you state above in your post the broader autism phenotype is 30 million strong.

It is possible that the grandparents of the autistic child that started autism speaks exist somewhere on that spectrum, and likely that many of the parents that support the organization do as well. That is one of the different perspectives I have attempted to provide here.

AGHOGDAY does post the same things,yes.but he is responding to to the same attacks over and ove again.if people had some original attacks then maybe he would have the oportunity to post some new defenses

True in regard to the ASAN half dozen, out on the street with hand lettered signs, and coming here to call for the blood of grandmothers to run in the streets.

But my objection to one is not a free pass for the other.

Autism Speaks does fit within it's class of ticks and leaches, it is a perfect standard model of bloodsucker. It is raising money for a private free ride, for some upper middle class Marketers playing at Science.

Grandma and grandpa do science is not helping. After five years, I have to say, No! You need to be Cured!

Autism Speaks has misrepresented Autism, and shut out the autistic.

I do think not many have noticed that posted research disproves Autism Speaks claims. First it was Abortion, through Genetic Study. That showed it was not a single defect, it was a whole other genome. The Twins Study, shows it is not Genetic.

So about a third of people have a different genome, from one point of view called the Broader Autism Phenotype, and more recent, the Neanderthal mix.

So this view that a third of people are wrong, need to be cured, is what needs to be cured.

The Model based on the film, Lives Not Worth Living, Eugenics movements of the past, this propaganda being called Awareness, also called finger pointing, needs to be Cured.

So far, they are a Billion Dollar failure, As that is where their money comes from, they keep trying to define Autism, as seen by Marketing.

A third of people have a much wider range, used to be called introverts, and lumping all birth defects and calling them ASDs to boost the numbers is just lying. Deaf, Mute, Blind, could be called Autistic. So could the Dead.

Marketing is what brings in money, Media spreads the message, and like Politics, hair products, religion, there are no standards.

Some things are based on facts, Investments, Science, and misrepresentations are called Fraud. It happens, Wakefield and Vaccines.

Autism Speaks is jumping forward from failure to failure like Bernie Madoff. Avoid have anyone look at the past, From Mass Abortion, to Drugs, to DNA Repair, their answers have worked to raise money, but have done nothing that benefits the Autistic.

On the other side, they have done a lot of harm. Awareness has pointed the finger at me. I consider it slander to go around behind my back telling people I should be cured. I consider it much worse to tell them to yell at me, the how to cause a meltdown lessons.

Autism Speaks has become a danger to my life,

ASAN are terrorist idiots, Autism Speaks is comitting Autism Fraud.

They have not retracted their stream of false statments. Autism is a Disease, Defect, Epidemic, a Danger, something that must be cured by any means.

That slander is what I now live with. I have been pointed out as being the problem. My life has changed since the Awareness Marketing, just like it did after Rainman.

Results matter.

Definition 1c will do quite adequately. I generally use words according to their primary meaning.

Given that Autism Speaks ploughs enough money back into research (generally toward eliminating autism) to satisfy the rules for a charity, and that it has to have operating capital in order to drive its fund raising (not for autistics), the 1% of the total income is very definitely the "cream" available from what's left over.

If you think that, as well as taking her salary, Geri also does 6a or 6b, you would have to check whether you are libelling her.

Your statement could have been taken that way, easily, by anyone reading this conversation, considering the context of everything else you have stated about the individual. You have clarified that is not what you meant; fair enough.

Their portrayal of Autism as a monster in the night that stalks your child and steals them away is dehumanizing. An autistic child is nothing more than some monster changling that has been left in place of your darling, loving, NORMAL child. I don't care what the cause or what the reason - I do not support any organization who feels dehumanization is an effective marketing tool.

Much of Autism Speaks reasearch projects but especially into prenatal testing is also funded by our government. Of course, this research proved that Autism is too complex a disorder to make genetic testing possible so they have changed the focus of their research . Autism is an expensive disorder to treat and manage -our government does not like to spend money on people. Autism Speaks focuses on low functioning autism - and has, on many occassions derided those of higher function as possibly not even having 'the same kind of autism'. So, only low functioning autism counts in their view and that is where the majority of their funding goes.

Recently they've made some changes of the kinder and gentler kind. Involving those with Autism at the board level. Removing the offensive marketing tools, rewording their statements to be more all inclusive. They are making some changes but still, they have left an extremely bitter taste in many peoples mouths. I doubt their reputation in the Autism community will ever recover fully.

I still believe petty infighting is the biggest enemy of the autistic.while the mainstream disability movement works like demons to make the world paradise for themselves,our movement is distracted by infighting and keeps us run on a eternal hampster wheel.so instead of bashing autism speaks or the asan,why dont we bash the mainstream disability movement that forgot about people with developmental disabilities a long time ago

A fair assessment.

You hit the nail on the head here. Aspergers has not been any focus of Autism Speaks research until very recently, as has been the same as government resources allocated specific to Aspergers.

In other countries, that have better social programs for those in need, Aspergers is more of a concern, and clearly identified as a different autism spectrum disorder, that requires different support. At least from what I have seen, the UK and Ireland seem to lead the world in this respect.

I doubt that will change until efforts are made in the US to actually diagnose and identify those with Aspergers, and it's not likely the government is going to do much more than they are doing now in the way of direct support.

Charities may help somewhat, but as you clearly state the government does not like to spend money on people, however it is a reflection too of society has a whole, not considering the needs of those living in a heterogenous culture as warranting the social services needed for the group as a whole to survive.

ASAN main, in effect, focus is on Aspergers Syndrome, and Autism Speaks main, in effect, has been on Autism Disorder, those with disabling symptoms, with perhaps at most, less than 5 percent of their efforts focused on Aspegers.

Facts matter too. No one has provided evidence that Autism Speaks has committed fraud and no one has provided evidence that ASAN are terrorist idiots.

The statement that ASAN are terrorist idiots is an extreme analogy for a harmless group of 5 or 6 individuals displaying signs of protest at an autism speaks fundraising walk, that no one is paying much attention to. It's 340,000 volunteers for autism speaks against 5 or 6 individuals volunteering from ASAN. That's harmless, there's no other word for it.

If it makes them feel good about themselves to do it, more power to them, it's a constitutional right, just as it is to walk in a charitable organization's walk-a-thon to raise funds to help those individuals disabled by the symptoms and co-morbids associated with autism disorder.

Autism Speaks has made mistakes; they admit to that, but mistakes do not equal fraud. Not likely they had anyone in mind that posts here, when they portrayed and focused on children with regressive autism, per the specific condition of autism disorder their grandson had.

Regressive Autism, in Autism Disorder as portrayed in their videos, could definitely be seen as dehumanizing, that's understandable, the whole point of the video was to show regressive autism disorder was a dehumanizing condition, that removed a child's ability to communicate with the rest of humankind. That's the reality that the parents and the child face, with regressive autism.

Fortunately with the research that has been done in the past and accommodations through therapy and technology some of these children regain the ability to communicate with others.

Wasn't about Aspergers though, nor was Rainman about Aspergers, that's fairly obvious, and of course, Aspergers, was not even a diagnosis at the time Rainman was presented on the big screen.

The major misunderstanding, for some, is the main focus for autism speaks has been autism disorder, more specifically the type of regressive autism that the founders grandson had. They weren't speaking to the condition of Aspergers that people have for the most part that post here, and voice their opinions in other internet resources.

No one can possibly understand regressive autism, better than the parents of a child with that condition. It's likely that the grandparents that founded autism speaks understand the condition better than anyone here, who has not been exposed to a child with regressive autism.

That's just common sense, videos and movies don't do disabilites 24/7 justice, in the way of awareness and understanding of the actual lives of individuals with those type of severe disabilities.

This type of autism disorder does warrant research, as does the remaining concern over autism like symptoms that have been shown in a court of law, to have been effected by vaccinations, although not proven as a cause of autism disorder.

Instead, potentially associated with mitochondrial dysfunction brain damage and vaccines, per evidence provided in the recent courtcase where the parents of a child with this specific mitochondrial dysfunction and brain damage were awarded 1.5 million dollars from the government.

These children with regressive autism, don't deserve to be locked away in the wards of institutions, when there is potential through research, to unlock them from the prison of not being able to communicate with the rest of the world. Autism Speaks sees this problem clearly as well as those who support the organization.

They are attempting to branch out a little bit into the world of those who struggle differently with Aspergers. That's a good thing, because as evidenced here, for some that can be a struggle too.

For those individuals a cure is not a likely scenario, but accommodations and better support in society, is a potential, for a better life, for the many diagnosed with that conditions whose struggles are not one of regressive autism, but struggles that warrant concern and consideration in society.

ahogday, it is just not true that ASAN focuses "mostly on Asperger's Syndrome." ASAN has worked on a variety of issues which affect many people with different ability levels and including all disabled people. Autism Speaks cannot, IMO, say the same. I can easily tell you ASAN's positions on issues such as inclusion in education, community living, fair practices in employment, etc., and show some concrete steps which we have taken to work on these things. These issues do not just affect people who are diagnosed with "Asperger's Syndrome." Frankly I think it is you who is being incredibly narrow-minded on this issue.

yes your right and i have tried to say this.i do think autism speaks over advocates for the highest functioning,mainly because its easiest to adsvocate for those whpo you understand best.the asan does try to represent everyone.this is also why autism speaks is so parent centered,because they werestarted by grandparents.people represent that which they understand best.people narrow minded stereotypes are a lot of what perpetuates autistic infighting.autism speaks is better at understanding parents and asan is better at understanding the highest functioning but its not all black and white and when are thinking degenerates to stereotypes thats when we decieve our selves.

One, Who are you talking about? Mainstream Disability? Like Scientology?

Petty infighting is their words, why they have to run things, I call it "Self Defining." ASAN is just another bloodsucker, looking to feed where that Charity does, and both claim we are ret*ds that can not do anything for ourselves.

If you would like to join them, go ahead, there you will not be able to post your view.

So again, this thread is about what we do not like about Autism Speaks.

People who post on topic are not engaging in petty infighting, they are stating the truth as seen by the autistic community about the shortcomings of Autism Speaks.

I do wonder about the defenders who disrupt the thread, saying what a warm place they have found for their nose.

How is that going to help Autism Speaks see the light? We are trying to give them a fair and open view of how others see them.

It has been mentioned, Marketing likes those who cannot speak, but most of Autism can. They want all the money for what they call ASDs, and to write Asperger's out of the book. This is about money, and I have not seen Autism Speaks accept that a third of people are somewhat autistic, and like any group of people, they come with some common problems that do not make Autism Speaks list.

Besides the Autism connection, Neanderthal is also in there, with some overlap. Neanderthal has been shown to have a differance of thought and perception, rdos, and does not fit under cure, treat, eradicate, but does seem to have been falsely? called autism.

While birth defects are the new autism, the old one with odd behavior but intelligence, talents, has even stronger connections with neanderthals.

As I would define us, ignors the DSM, Autism Speaks, and is based on genetics and performance. Northern Europeans have neanderthal genetics and traits.

The Patent Office and Piano are not our defects, no other disability has such skills, IQs, and we are being mislabeled for money, defamed, slandered, by a major force that will even invade here to disrupt our self discovery.

If Autism Speaks was real people, who had defamed another group by accident, I would expect an apology. They do know what Aspergers is, I am sure some of them have run into the neanderthal study, but Marketing is sticking to, They are all ret*ds.

I am bringing out that they are not dealing with us as a people in good faith. A third of people, our neanderthal ancestors, our grand history of music and invention, our Culture, is under attack by paid agents, hired Leadership, and dealing with them has not been productive. They are doing it for the money.

Autism is a new and broadly developing field, understanding it takes understanding the whole range, Autism Speaks is not interested, just the ret*ds and the Cash.

Genetic Science is a field now flowering, in Medicine, Anthropology, the world is showing it's secrets. Autism Speaks dropped it when it could not produce the Abortion they wanted. The Human Genome Project, The Neanderthal Genome, The Denisovan, are worthless to marketing, but are gold to anyone who respects Science.

Autism Speaks is only buying some names, they do not care about the advance of Science, just using people in lab coats for marketing. All of their Research, could not be sold at a garage sale. In it's own way, it is like Wakefield, pretend science for hire, to raise money. He worked for Lawyers, these work for Marketing. Both are Science Fraud.

There is some much better science being done, that does not ask for donations. It covers Autism and Genetics without the Marketing spin.

Autism Speaks is a Charity running some fake science, trying to redefine Autism, and write out the larger and higher functioning end, because it does not fit their Marketing.

My self defining, and others, rdos, Max Planck Institute, is showing a leading creative edge of humanity coming from Northern Europe with neanderthal, Denisovan, and autistic traits. The Swedish Disease, whole countries are autistic in culture. Sweds, Norwegians, Finns, Germans.

My Culture and Genome, or Marketing's Disease?

im not sure where you get scientology from the mainstream disability movement,i did not say anything about religion.the politics of the disabilty movement is mostly access to public facilities and stem cell research.as far as me being off topic,you may have a point

The Disability Movement has not made much impact. I see their empty parking spaces all over, millions of them.

ASAN was going for Neurodiversity, but in my view that includes Ted Bundy and Charlie Manson. It is a bit broad for my tastes.

I would not lead with Disability anyway, I am a Recluse,it works for me. Tony Atwood said to cure autism, give them a room of their own.

I am not looking for a parking space, Universal anything, I would like to know more about my little corner of life.

I once started an inventors group. Met some strange people who held patents. Later, after Wrong Planet, I realize they were all autistic. As they do produce most of the new ideas, I think them worth study, for like Wrong Planet, they do understand each other. A useful and productive subtype.

I think we would find the same in Music.

A lot of us get there later in life, conflicts with the common world, but following our own view. Removing the obstructions could lead to higher production.

Many inventors are serial inventors, after they get the first one, and some income. Most inventions are not used, but do produce things that follow.
Still, those ideas together produce most of the economy.

I call it Applied Autism, MIT and others have tried and failed to produce it.

So I value Autism, and it's byproducts. Invention cannot be taught, but we could study the process. It is one form of Autistic thinking, perhaps it could be taught to autistics.

Cures and Disabilities are not my goals.

I'm comparing Aspergers with Autism Disorder, the kind with disabling symptoms, that autism speaks focuses on.

I understand ASAN supports cross disability rights, and I agree on most of what they are doing in respect to those rights, but the organization itself is comprised of board members that all have incredible resumes and accomplishments in life.

There is no inclusion in that board of non-verbal individuals with autism disorder, that do have the ability to express their ideas through communication devices, that I am aware of.

If those individuals were the organizations main or equal focus, an effort could be made to include those individuals on their board, in the decision making process for the organization.

The organization has made an effort to provide contacts for job opportunities, here on this site, but to date, every job has required a college degree as a prerequisite.

There are many individuals with autism that do not have the abilities to acquire a college education, that can contribute to society within the realm of their abilities, if opportunities are provided. I'm not seeing a realized effort there, unless I am missing something.

Autism Speaks is providing a great deal of effort and focus to help individuals with disabling symptoms of autism, and disabling co-morbid conditions, through research.

I don't see any problem with ASAN that the staffing of the organization's board is not comprised of the statistical equivalent of the reality of the autism spectrum, nor a problem that the efforts to provide job opportunities for those on the autism spectrum are not representative of the reality of the education levels attained by individuals on the autism spectrum as a whole.

Other organizations exist soley to provide job opportunities for individuals with autism along with other individuals with disabilities that don't have the abilities to obtain higher level education requirements for jobs.

No organization can possibly do it all, and I'm certainly not implying that ASAN's entire focus is on Aspergers.

As large as autism speaks is, they don't make it their mission to provide all the services needed for autistic individuals.

There are thousands of organizations that play a specialized role in meeting these requirements in the US. I respect the efforts that all these organiations put forth to help people with disabilities.

This thread is about an individuals question as to why exactly do people hate autism speaks.

Objectively speaking, in part, the reason why some people hate autism speaks in the autistic community have been some misconceptions of the organization that are spread like urban myths.

You defended autism speaks actions recently, on their action to protect their registered trademarks, in the controversy over the cease and desist letter sent to an autistic teenager by autism speaks. You provided the best, legal clarification of that incident, so far, that I have seen here.

It's part of the conversation on this controversial topic, that some are willing to interject on the topic.

I came into this conversation because someone stated the organization was an anti-vaccination organization, when in fact the organization has lost support for their pro-vaccination stance with supporters, including the dismay of the daughter of the founders of the organization.

There is another thread here going on now, where a person wanted information about the organization, and they were provided the same link including information, that has continued to be provided for two years now, as an urban myth, that autism speaks sought to censor a teenager over producing a T-shirt.

I suspect the same link with fallacious information will be provided five years from now as a reference, it's the way urban myths propagate themselves.

The individual was advised not to look at autism speaks site, because they wouldn't find the information they sought there.

Autism Speaks does have resource information on their site for autistic adults that might help someone, there is no need to hide that information from anyone, people can make own conclusions on the merit of the information. That's one positive thing that autism speaks does for individuals with Aspegers.

There is no need I can see for you to insinuate personally offensive comments toward individuals that provide an opinion that don't oppose the organization, or from the perspective as a parent of an autistic individual that was not so blessed with your cognitive assets, to broadly paint the individuals that autism speaks seeks to help as ret*ds.

I didn't agree with autism speaks dehumanizing depiction of autism that has been presented here from a couple of years back, nor do I agree with that disparaging language in identifying autistic individuals.

There are are a great many individuals and groups that are part of this autism pie, and in the general scheme of things, no individual or organization that I have found is completely without fault or merit.