ASAN Protests Autism Speaks in Washington DC on 31st

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I got these facts from you.

A math lesson, .5 in a thousand, ,05%= 500 in a million, and we have 330 of those. So maybe 165,000, not tens of thousands.

I hope the statistiscal analysis and demographics you did did not involve math.

A reading lesson, affected familes, Mom, Dad, Siblings, an easy million people directly affected by that .05%.

Adding Aunts, Uncles, Grandparents, several million. These are the people who bear the burden, cost, and walk together to support more research. Protesting them has all the class of protesting the funeral of a soldier who died in Iraq, because you are anti war.

At least we agree on all ASDs, 3.3 million who meet the DSM criteria.

It does not suddenly end, Broader Autism Phenotype, those who do not make DSM standards are 10% of the population with some autism symptoms. Geek Syndrome, a lot of Wrong Planet members.

This 10% is very real, documented under BAP, and while in need of less services, any help would be better than nothing.

The only help for this largest group is Wrong Planet, and Books.

While BAP has it's problems, but for the meshing of a few genes, things could have been a lot worse for all of us.

So I support Scientific Research, and will ignore the marketing types who bring in the money.

I also support all of the families who have dealt with autism, at any level.

I am sorry but when the scientific research is going towards a "cure" and when in inaccurate portraite of Autism spectrum disorders is painted, and when there is a lack of real representation on behalf of their institutions boards and staff, one HAS every right to protest them. The fact that they are violating one of the fundimental principles of MOST disability organizations is sickening. That principle is that the primary voice for these organizations should come from the people with the disability.

I am sorry, but no matter how hard effected these families are...they still only claim represent only a small minority of folks with autism spectrum disorders and misrepresent statistics. Their senior staff is still overpaid. I have no love for this organziation, they are doing disability advocacy in all the wrong ways, doing it in ways which are insulting to those of us who have ASDs. I have friends who are blind...lighthouse is primarily run by blind persons, not an organization that blocks blind folks from being on the board and running the organization. Even Downs groups have people with Downs serve in their organziation.

I am sorry, I am not a lick sympathetic to these organizations, no matter the circumstances behind the people who support them. It DESERVES to be protested. The marketing IS bad by the way because it paints an inaccurate picture of most of us who have ASDs. What is worse though is the fact that we have no voice in an organization that's called autism speaks...when in fact we are silenced within the organization itself and do not have any voice. That's the problem. The very fact we are not given the same respect that blind people, deaf people, and people with other disabilities is outrageous.

At least you are acknowledging the actual statistics.

Autism Speaks is about the .05%. Since you are speaking, you are not one of them.

Autism Speaks makes no mention of Lego Addictions or Starwars collections.

Yes, a Cure, for an expensive and lifetime problem. So you stand against a broad based advance of Science?

The laws regulating non profits do state clearly that the organization must stick to it's chartered purpose, which for Autism Speaks is furthering the scientific study of infantile autism.

They make no claim to other ASDs, in fact they exclude them. Infantile Autism is their only subject.

The word Autism may have been applied to Asperger's, but it and all other ASDs are a different condition. If you want an organization to represent your disorder and disability then start one. Point by point, you have nothing to do with infantile autism.

It seems clear from your writing that what you want is to take over Autism Speaks, and change it to being run by, and for, ASDs. Taking the property of others has a name.

Autism Speaks was built for the sole purpose of furthering research in infantile autism, all of it's support has come for that purpose, all of it's membership has joined for that purpose. All donations have been given for that purpose.

So unless you are claiming infantile autism, it has nothing to do with you. You are just someone who wants to gain control of the work of others, and redirect the funds gathered for infantile autism, for your own higher purpose.

To gain this higher purpose you will stalk, disrupt, the activities of an organization that has nothing to do with you, confront the families of infantile autism, to further your demands for control of the organization. It is a clear case of Extortion.

Your disorder and disability is not the same, not even close, and there are other organizations that are run by people just like you. Neurodiversity represents all forms of mental illness. They fit with your anti cure views. They are Anti Science, do not understand Corporate Charters, and have loose views of Private Property.

You do not have ownership of ASDs, many view it as a differance of thought and perception, part of the normal range of the gene pool, and do not see it as a disorder or disability. This faction sees respect as something earned through respectable behavior, and taking an intelligent view of the broader world as it is, giving respect to others.

First, I have respect for those families touched by infantile autism. I respect those who have donated the funds to further scientific research, and those who have worked to raise those funds. I have respect for the people who propose and carry out the scientific study. They are not some narrow focus of a single issue, but place available funds to best advance the broad front of science where it will do the most good.

What the science has shown is a genetic cause, that leads to other forms of Neurology. Hence it is not a disorder. It is not a good predictor because while some claim disability, others function fully in the world, and often excel in the arts and sciences. Same genetics, same traits, very different outcomes.

So there is not one group of ASD, there are several, some who support science, some who support disability politics. Most on Wrong Planet say they are in school or working. Almost all of the Broader Autism Phenotype are just living somewhat normal lives. They all have traits they would like to know more about.

Street gangs confronting the families of infantile autism, making demands that are impossible, to change the direction of the organization, and the leadership, to make it speak for their disabled views, reflects badly on the rest of us, who are out in the world, but are still identified as autistic.

You have nothing to do with infantile autism. Autism Speaks deals with nothing else. By their corporate charter they can deal with nothing else. All of their donations have come for that one purpose.

Autism Speaks has nothing to do with you, or you with it, it does not want you. It is about infantile autism, and nothing else.

What you say about them I say about you, stalking, extortion, claiming to represent all austic people. Your disabled disorder politics do not speak for me, reflect my views, yet will reflect badly on our whole community, most of whom go to school, work, and live in the world.

You are doing what you claim Autism Speaks does, painting an inaccurate picture of our community.

You are not our leader, you do not speak for us, we can do that ourselves, every day, with the people we live with. I do not approve of stalking, confrontation, extortion, or a disorder disability view.

You wish to be given respect, I wish to earn it.

Inventor... you need to look at the Autism Speaks website:
http://www.autismspeaks.org/

Currently, that says, in big capital letters "AUTISM PREVALENVCE FIGURES ARE GROWING" - which contradicts current research.

Preceding that, they seem to acknowledge the UK's latest evaluation of prevalence, by their "NEW STUDY INDICATES AUTISM AFFECTS 1 IN 91 CHILDREN 1 IN 58 BOYS". However, they have slanted that result, by suggesting that the study was restricted to younger people - it was not.

In any case, they have not got around to correcting their statement, under "Be Informed / What is Austism": "Today, it is estimated that one in every 150 children is diagnosed with autism, ..."

Prior to that statement, you can see their definition of "Autism", where they make it abundantly clear that they will use the word interchangeably to refer to "Kanner's Autism" (when it suits them to say how awful it is) and "ASD" (when they quote any prevalence figures).

I can find no occurrence of the phrase "infantile autism" at any point throughout their site. Under "Autism Speaks", their "Mission" statements make no such reference. Using their "search", it did throw up six apparent matches, inside PDF files, except that the matched extracts only showed the word "autism", and that only for the first four.

I have no idea what relevance the "Broader Autism Phenotype" has - other than for quoting a set of unsubstantiated "statistics". (So far as I am aware, BAP has no strict definition, so there can be no statistics for it, as yet.)

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(BTW... am I right? I think Autism Speaks have finally removed their link to the "I am Autism" video. They had sneakily left it embedded in one of their "News" items, so that they could say they had "removed it", though they had only removed it from the front page.)

I have a question inventor...why are you on a board that is hostile (and factually informed) towards autism speaks.

The fact is autism speaks MISREPRESENTS statistics. You tried to as well...but I caught you on your lie, I just happened to know the better information. Autism Speaks puts out numbers that are representative of ALL autism spectrum disorders and spreads misinformation. Them using these numbers for the broader autism spectrum disorders and claiming that they are a "growing autism phenomenom" when in fact the real numbers for severe autism have remained STAGNANT. If they want to use the statistics for the entirety of the autism spectrum...they have to let US in. Otherwise they are going to get protested by those of us who have autism spectrum disorders and KNOW how to fight back. I am in FULL support of the protests, and I think its damn bloody time that these Autism Speaks folks quit misrepresenting the disorder...which is EXACTLY what they are doing. I also would not call counter protests "street gangs" rather this is a necessity to fight an injustice, which is exactly what Autism Speaks is.

Me standing in the way of broad science...hell no. What I am doing is standing in the way of eugenics and bad science. The "cure" is a flat out code for eugenics.

Seriously, leave this board and stay off. I am going to ask you to get banned for misrepresenting facts and supporting autism speaks.

Oh, ok it finally makes sense. The "Superior Asperger's Types" are all somehow like you. They all think like you and share the same opinions as you. Which makes any of those of us out here that don't agree with you the, by you definition would be "lower functioning", "gullible", or maybe even Inferior Asperger's Types.

Thanks for clearing all that confusion up. It very obvious you have really thought out what your saying here and have probably given this topic a good clear consideration from all sides before coming to this well informed and solid conclusion.

As I said, it is all marketing hype. Re reporting news from tabloid headlines.

I took Infantile Autism and .05% from starygrrl.

As a growth industry, I agree that it has been a stable amount over time, but as no one was keeping score, it has an apparent rise over time. That then becomes shocking news.

Another growth factor is Psychobabble expanding their franchise, and conditions that carried other lables now being called Autism. Studies do show Autism in 1 in 91, 1 in 150, or 125, or 100, so I doubt everyone's math, methods, goals, and intent.

It is the nature of marketing to widen the scope, tell half truths, imply as much as they can without being charged with false advertising. No one says "Our toothpaste is about the same as everyone else's."

Everyone seems to have their favorite Current Research, I may be the only one who notices that none of the numbers agree. I look at it all with an eye on who put it out, and their purpose.

As far as I can see Autism Speaks does not make up their own lies, they just reprint the lies of others. Schools want more funding, Autism rates up! Psycholigists want more office hours, Autism Speaks wants donations, and even government agencies want to put on more staff, get larger offices, and that is reflected in their assessment.

Ads by Google on my sidebar are selling into the market, for everyone involved it is a business. Here on Wrong Planet I see an ad claiming that all we need is a Vitamin Supplement. Being shown on Wrong Planet, and yourself a Site Administrator, I am sure the content of the ads have all been verified?

I recall another where a non verbal child could be taught to speak in only twelve days. I do not think this is the whole story, it may turn the tide of the Autism Epidemic, but my coming Google ad, Autism Voodoo Charm, has the power of Gris Gris.

I am wary of people who know the Truth, Facts, use Numbers, and English. I always wonder what they are up to.

My view is Genetic, and not just Autism, Life. I see markers defining a sub species, and recent genetic study is proving it. The word Autism carries a lot of excess baggage. Studies done fifty years ago on six hand picked subjects are still being carried forward and claimed as Autism Science. When understanding is missing, everyone has an opinion.

The simplest view, turning within, the Markram's Intense World Syndrome, under stress people turn within or without for stress relief. It is hardwired behavior.

As many have found sucess, advanced degrees, lead in technology, it is not a defect, just another way of being, it's Genetic.

On close inspection I find all forms of marketing and advertising border on fraud. I shop based on results. The only field with less regulation is politics.

No matter how it happened, Autism Speaks did give $10,000,000 last year for Scientific Research, mosty for Genetics. Methods and motives aside, results count. Being a non profit they have been giving about half the take to research for years.

Most of this has disproved their prior views, Vaccines, metals, bad mothers, and narrowed the field to Genetics, where they also do not like the results. They were looking for a single marker, they paid to learn at least six, likely a lot more, working in still unknown ways.

Even that is not clear, for Genetics shows that genes and autism only overlap, it is not direct evidence of autism. Eugenics would lead to the extirmination of a quarter of the population. As autistic traits cluster in technology, education, the results would be a disaster.

Since their own efforts are undermining their point, and furthering science, I am in favor of them continuing. No one else is putting up $10,000,000, they have no control over the research, the results support my view.

I think the rate of Autism is going up. The revised DSM without Asperger's, which has been an outside marker for the field. Reading here about it, a link, the purpose is to move the goal posts out, taking in more of the Broader Autism Phenotype.

I have said the Half Aspies form a larger group, with common needs, Geek Syndrome, which can have major life problems. While I disagree with the Psychology view, seeing the outward symptoms as disorder, if I was starving I would eat at a Christian soup kitchen. Results matter.

The relevance of Broader Autism Phenotype. Autistic traits are observed in a larger population. For the purpose of unsubstantiated statistics, I would guess 10%. There grading from infantile autism, to ASDs, to BAP, is just what would be expected from a genetic cause, and 10% is a sub species.

The Neanderthal Genome Project is still working, but early reports show a percentage of humans do seem to carry Neanderthal matches in their DNA. Work is ongoing, but it does match the amount, 5-10%, location, Northern Europe, the date, starting 37,000 years ago, and as rdos documents, related traits of red hair, overbite, gait, and related behaviors.

The Department of Defense has been paying to collect the DNA of autistic children, and running their own tests. Mostly they invest in advanced technology.

Only Genetic study can continue the work, which will lead to an input view of life. Just as Myers Briggs was developed to place workers in suitable jobs during WWII, recent sorting shows that the autistic line is a valuable resource.

One inventor can change the economy, and improve life for billions. In an age of declining resources, thought is our best product.

So I like the directions of current research, I have no complaint about the DoD Weaponizing Aspies. I have no complaint about where the money comes from. Money and dice have no memory.

Science is peer reviewed facts. Knowledge is neither good nor bad, that we leave up to people.

Politics is a social construct. I am not social. In your face confrontation by social groups claiming rights? Protests directed against people on autism walks? They do not work at Autism Speaks, they are not scientists, or even psycholigists. They are mothers, fathers, siblings, grandmothers, aunts, uncles, cousins, who have a problem in their family genetics.

Social activists looking for a cause? People claiming they should have a seat on the Autism Speaks Board? Force the organization to represent them? Claim to represent all autistic people? It does not sound autistic to me, it sounds like a street gang trying to extort a payoff.

They do not speak for me, I do. I support the families that go on autism walks.

I see no merit in rants that because an autism organization exists, they, the self elected leaders of autism, should take it over. I see no good in confronting the families of autism.

Now they come to Wrong Planet and demand political correctness, uniformity of opinion, or leave.

They push disorder, disability, and more than political action, terror in the streets, which has brought calls for taking violent action against autism walks, which I quoted. Then telling me to leave this board and stay off, or they will have me banned, they seem dangerous and irrational.

They try to spin the claimed facts, have a somewhat confused delivery, call for banning any who hold another view, just what can be found on the Autism Speaks web site.

Calling for acts of poitical violence is a fair defininition of Terrorism.

Demanding someone's assets under threat is Extortion.

I support all of the families connected to autism, and anyone who will give $10,000,000 a year to Genetic Research.

It is my Special Interest.

1) I'd trust Autism Speaks to help in the general, objective pursuit of science as it pertains to autism and genetics about as much as I would trust Focus on the Family or some such group to do objective research on the genetic causes of homosexuality. That is to say, not in the least. Autism Speaks has an agenda, and that is cure, cure, cure. Science, on the other hand, is (supposed to be) objective, and does not and will not necessarily yield the results that someone wants it to. They will in no way advance science unless it fits them to do so. They will certainly not be endorsing any research that shows that autism might not be a wholly bad thing, and might even be useful.

2) If Autism Speaks means only to deal with extreme LFA/"classic" autism/Kanner's/what have you, it should come out and say so. However, they don't specify. And why should they? If they use the broad brush of "autism" in their advertisements when it's convenient for them to raise funds and then shrink back behind the defense that they're only talking about a subset of autism when self-advocates show up, they get to have their cake and eat it too. Autism Speaks RUNS on subtle distinctions and equivocations of terminology to get the most mileage while trying to narrowly escape criticism, thinking that they can talk about autism but not autistics, using the broad term of "autism" and then only showing it to be comprised of low functioning people, etc.

Also consider that, just because we (and, supposedly, the people involved in Autism Speaks) know the difference between the different spectrum disorders doesn't mean that everyone else does, including people who know an autistic person. By not specifying which form of autism - or, rather, which aspects of a specific autistic disorder - destroy families, drain funds and all the rest, Autism Speaks is doing a great disservice to the whole spectrum. The general public does not, and will not, distinguish between classic autism, Asperger's, PDD-NOS, nonverbal learning disorder and the rest. Autism Speaks knows this, and still refuses to distinguish things for the sake of honesty. The stereotypes will hurt us all.

3) Even when "just" pertaining to low-functioning individuals, this sort of advertisement is unethical. It puts all the emphasis on the impact autism has on "normal" people, while treating the actual autistic person as not even part of the equation, and perhaps even indirectly demonizing them. With no other disorder, even those more serious and life-threatening than autism, could an organization get away with completely cutting the actual person with the disorder out of the picture. It would not be okay to ignore them and their experiences, and it is not okay to ignore autistics themselves and their own experiences.

Autism Speaks should either change the way it portrays autism, autistics, themselves and their goals, or change their policy of excluding autistics from joining them. They have so much power and presence in the autism discussion and are misusing it at the expense of ALL of us, "infantile autistics" and "superior Asperger's types" alike, that doing otherwise than suggested would be dishonest, corrupt and immoral.

I agree, they are dishonest, corrupt, immoral, and very NT. Even as NTs go, the marketing and advertising types are the worst.

They are on to something that brought in $20,000,000 last year, and that is everything to them.

I dont think they have any understanding of autism, not even at the defective Psychology level.

I have not heard of any of their staff being trained, educated, and they even seem to avoid personal contact with autistics.

They are a bunch of NTs in Marketing.

Now in defense of NTs, as someone with inside knowledge, it took me years on WP to learn about the range, the confusing levels, types, and I do not have answers, just a view of causes, and that yet to be proven.

Their main product is cure. The general population thinks in cure, perhaps eradicate. This is why they give money. Well, that and the tax deduction.

I am better at science than people, and from that view I do not think a cure is possible, or even finding a marker that could be used for abortion.

They do not get much say in the research. The principal is directing research to advance science on a broad front, Autism Speaks is only one doner, and the work is always reviewed to make it the most effective in adding to the body of knowledge.

About the only effect on science they have is putting some buzz words in the grant application that will bring in autism speaks money.

They are bound by being non profit to give, and the results are pure science, that NTs in Marketing cannot read, or understand if it was explained to them in little words.

All of their funding of science is taken then used mixed with other money. Politics, Psychology, are left out, leading figures in the field chose where to apply the research, and their goal is the broad advance of science. A large percentage of the higher academics, and the researchers in labs, are autistic.

Right now that is genetics. It is a fairly new field with lots of promise. It is a big project with lots of grunt work. The Human Genome Project was spread over all available labs and took years to reach early results, those proposed more questions, and decades more work.

We have the genome of the Fruit Fly, mouse, and the food animals. Knowing the pattern, and knowing the function of every bit, are different subjects. Then there are the unexpected, such as new genetic material added to humans 10,000 years ago. It does not seem to be like the normal mutations over time.

Farther back 37,000 years ago another addition, two sub species long apart rejoining.

Broad patterns are easy to spot. The fine details of how genes interact are not.

Autism might be related to six or twelve places on DNA, but each of those can be turned on or off, and we have no idea why. Same genetics, many outcomes. What has been proven is, there is no single marker like Downes, or Retts.

Infantile Autism is very real, it does cost billions a year, and no one has a clue. Even it's genetic link, it can be one child out of three in the same family. Something that costs billions is worth study, which has produced no results. If it was common in a line they would have died out due to low reproduction rates. We are still at square one on that.

There is nothing in their DNA that we can spot, there is perhaps a differance in brain development. Everything we can think of has been checked, nothing shows results.

Then there is the more common Aspie/HFA line. They show related traits, and also some savant talents. Some do, some dont, and no two are alike. The same zero on cause, they were not caused, they are just genetics unfolding.

Broader Autism Phenotype shows the same grading outward, perhaps 10% of the population, who work at Universities, in IT, Technology, or sit in their parents basement with their comic books and Starwars collection.

After that it falls off into the NT range, Marketing, Advertising, Sports Fans, a lot of living in the moment, trying to be like everyone else, and there are some good and concerned people who are sure everyone is nuts. Scum rises, so we have politics.

I have a problem with the general public. I was just different till Rainman came out and educated them, now they ask me how to win the lottery, and see me as a ret*d they can get away with stealing from.

I do not want Autism Speaks to represent me, life would get worse.

I do not want to be claimed by Neurodivirsity, the Union of the Mentally Ill.

I do not want to be defined by Psychology. Their view of part of me in their sorting system is not me, or anyone.

ASAN has nothing to do with me. Their stereotypes will hurt us all.

Raising awareness in the 99% will lead to more problems not less.

Being different did not affect being employed, but a common knowledge of Autism would. Give them a word, they will use it against you.

Tell them about symptoms, they will douse themselves with perfume, and light scented candles.

Tell them about verbal problems, they will add to the confusion.

Education will not lead to acceptance, but exclusion.

Let Autism Speaks rant, their description of autism does not fit me, leave the public in the dark.

I dont want anything to do with the NTs in Marketing. Of all the useless people on earth, they do bring in research dollars. The research favors our group, so just leave them alone.

We do have a common cause with the families of autism. Why are aspies different than auties? We are the closest related group, and should be open to science. Perhaps there is something that is the differance between Infantile Autism and Asperger's, it could all be in one gene bonding.

Since we are in the same genetic pattern, we might be the cure for Infantile Autism.

I use cure loosely, the result would be getting an Asperger's pattern.

99.95% of ASDs are not Infantile Autism, .05% are.

Virus are being used to insert new genes, and a simple pre natal flu could have no effect except changing Infantile Autism to another ASD. Otherwise it would have no effect.

It might even work on existing cases, we do replace all the cells in our body, I have heard seven years, so if the new cells had other DNA bonding, it might lead to change over time.

For adults this might lead to some strange people, but for the new born, where Infantile Autism is now spotted early, it could lead to a normal life as an Aspie.

So my view is let Marketing bring in the money, support the families, offer our aid to science, and we might be the cure.

At the least we can put forward an image of being socially responsible, compassionate, and pro science.

We are of course a genetically diverse lot. But the 1% closest to the major problem. A study of our DNA would show the common factors that diverge from the NT majority. Right now the Infantile Autism is being compared to NTs, and not getting matches. Compared to ours, we might narrow the problem down, and fix it.

Family Tree is doing this for geneology. People are posting their DNA on line, it is confirming ancestors and showing family relations. I belong to a posted group.

It costs, but I would write up a Grant Application and submit it to Autism Speaks, to build a data base from Wrong Planet and post it for scientific use. While 1% is the official figure, try finding them. Medical records are kept secret, and the only one I have heard of is the Department of Defense study.

That was children, Wrong Planet is the only community of ASDs, with some life history. Genetics, plus outcomes, plus comorbids.

Family Tree is great, and computers. With each test they send out in plain English, the meaning, where your ancestors came from, going way back. You can also check you results agains their data base and find who you are related to. They also supply the science data that researches would want.

We might be looking for a needle in a haystack, but at least we are the right haystack.

*** POST EDITED AND DELETED***

PLEASE NOTE THIS IS ABOUT THE ASAN PROTEST IN 2009 - NOT THE PROTEST IN 2010