Autism Speaks.....?

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What does that mean? Where it comes from? Is that to say that if it was from normal people, it would be valid to dislike this organization?
I don't know much about them and don't have an opinion on the group.

There was at one time, in the past, a forecast that a definitive prenatal test might be possible, but it does not appear possible at this point as there are too many forms of autism and too many different underlying potential factors associated, for even the potential of a definitive prenatal test.

That post is several years old. Since that time the organization has clarified in an interview provided on this website, linked earlier in this thread in that post on this website, that it is not funding any research for a prenatal test for Autism.

There is funding ongoing to look at potential prenatal factors of intervention in Australia and the US, in two five year studies, but Autism Speaks funds neither of those studies.

To put the potential of a prenatal test in perspective. There is one blood test developed that assesses autism in 70% of individuals already diagnosed with Autism, but it is only effective in assessing risk at 2% instead of approximated at 1% in the general population.

It is not much more effective than using the Aspie Quiz as a screening tool for Autism, as that Quiz and the Autism Quotient test assesses an autism spectrum disorder in close to 80% of individuals who are already diagnosed with an Autism Spectrum Disorder but also assesses close to 10% of the general population, without a diagnosed disorder in the "autism spectrum" ranges of the tests/quiz

Even the diagnostic criteria of PDDNOS. is loosely defined enough where the potential of misdiagnosis with a DSMIV screening tool, in recent research, was demonstrated at close to 90% in a general population sample without a spectrum disorder.

Effectively what this means is up until this point there has not even been an accurate diagnostic criteria, to diagnose autism.

Any autism research scientist, 'in the know', will relate that the current 2027 diagnostic combinations just to diagnose Autistic Disorder, makes it virtually impossible to determine causation of any specific defined condition, because the diagnostic criteria does not measure any specific defined condition.

Considering that the Autistic characteristics exist estimated in 10 to 30 percent of the population, there is no more likely going to be a prenatal test to identify what 10 to 30 percent of the gene pool shares over and above being introverted.

It's part of the gene pool that is not going away, regardless of any blood test that can bring up the risk of 3 percent instead of 2.

It is the assessed co-morbid conditions, more definitively defined, that often make the difference between a broader autism phenotype, and that are on the table for actual remediation of symptoms that some people do suffer with on the spectrum, with these co-morbid conditions.

There is a 25% increased risk of a a sibling of an elder sibling being diagnosed on the spectrum, far exceeding any potential risk from any post natal screening test on the market, per the current one that provides approximately a 2% risk instead of 1 percent risk.

People have already been making their decisions not to have additional children through potential effective birth control or abortion in some cases. Including abortion specific to male fetuses , by advice of genetic counselors, as they effectively have higher risk than females. This is based on familial risk, not any blood test.

It is highly unlikely that any test developed is going to provide a higher risk than what is already known about familial risk. An additional 1 or 2 percent risk does not mean much compared to a 25% familial risk. And it is certainly not a reasonable risk assessment a person could use to base a decision of abortion on, alone. And it is a moot point anyway, currently, as it is only used as a postnatal screening device along with all the other screening tools for purpose of detection and early intervention, to help children gain full potential in life.

Part of the reason the Republican party failed this time, is that a minority aspect of it led a divisive effort within the boundaries of the Republican party. This division divided resources and support.

The divisive effort by the ASAN organization, that has spent time and effort in a mission in trying a futile attempt to close down the Autism Speaks organization, has only wasted their time, efforts, and organizational resources, that could have alternately been used to promote a positive messages to help people on the spectrum.

Autism Speaks only grows stronger because it retains a positive message of hope, not a divisive one of deconstructive effort. It has responded to constructive criticism with positive efforts.

This is a core positive attribute of any successful organization, run by professionals with decades of business and success in the real world, to make it happen.

The result is a Facebook page with 1.1 million likes as opposed to an ASAN Facebook page with about 8 thousand likes. If there was a positive message of cooperative effort, the support for ASAN could have been tremendous at this point, instead of the effective result of years of negative efforts against people volunteering with compassion to help others.

For whatever reason the negative effort seems to remain more important.

The same is true for the tea party. The tea party is continuing a negative song for its "in house choir", but not creating constructive results with those negative efforts.

In one case the Democrats are the winners. In the other case Autism Speaks is the Winner. But, in both cases there are people that lose out over the deconstructive efforts.

Last edited by aghogday on 05 Apr 2013, 4:10 pm, edited 1 time in total.

Autism Speaks will never speak for me.

Well I'm glad at least a couple of people got a laugh before this turned into an evolving Wikipedia article.......

Are you sure you're comparing the same thing? There's a big difference between "25% increased risk" and "25% risk".

Without any known factors of risk specific to an individual child, there is a 1 to 2 percent risk in the general population as currently statistically assessed by government supported studies, from the CDC.

There is over a 25% risk with an elder sibling on the spectrum, if the younger sibling is male, and a 9% risk if the younger sibling is female. Overall, the risk is about 19%. for male and female siblings with an elder sibling on the spectrum.

This is why the advice from genetic counselors can be to abort the male fetus instead of the female fetus. However, it doesn't require a genetic counselor. A quick trip to Google, and a search on sibling risk, brings up that information with no fee from a genetic counselor or doctor, if one cannot afford one. Then a choice can be made for elective legal abortion, based on individual choice. Effectively. a Prenatal test already exists, and is in the link below. No blood test required, just a click on a link. But, it is still not a definitive one at one in four.

http://www.npr.org/blogs/health/2011/08 ... an-thought

Thanks for visiting the site again and providing the emotional motivation for response to a dead horse that continues to be beaten.

If one really wants to see a Wiki article on it, I suggest this link, where that horse was finally buried in what seems like a long time ago. Occasionally people dig it up. That's certainly okay, as it is an excellent mental exercise for memory. At least for me.

http://www.wrongplanet.net/postt177883.html

The horse has never been buried in nooks and cranny's on the internet, such as places where the video, I linked, are viewed by those that dedicate a significant portion of their lives, to the Hatred of Autism Speaks.

That emotion of hatred from experiences in life may certainly be valid, but likely in many cases directed at Autism Speaks, because it is a compassionate target that will most often not fight back.

Except, in some cases where emotional oriented people associated with the organization, that have individually witnessed people on the spectrum suffer with some of the co-morbid conditions, say no, this is not welcome, in Autism Speaks volunteer efforts.

Protests are legal at funerals and volunteer efforts designed to help people that do indeed struggle in life, but in both cases they are a source of potential emotional harm to others.

Some people do not want to see that. ASAN does not apparently fully understand that other perspective, otherwise there would be no protests at these volunteer efforts, and continued contempt aimed at the charitable efforts. That full phenomenon is clearly illustrated in the video linked, provided earlier in this thread, as an exercise in that different perspective.

The fact is that the efforts of autism speaks seek to dehumanize and hurt us for the sake of their personal profits and corporate profits.

When was the last time you ever saw them say a single decent thing about us? All they do is depict us as helpless little freaks. Why? Simple, money. Aside from all the things that people buy to "support" autsm speaks (blue lightbulbs), and the fact that less than 10% of the money they make actually goes to help us, they seek to (as sociologists would put it) "Create permission". Now by that I mean when was the last time you saw a mass producible product that specifically targets autism itself? We have pills to deal with adhd, pills to deal with schizophrenia and prenatal testing for down syndrome(for which most down syndrome babies are aborted now because of it). All we have for autism is services, nothing that can be mass produced. They also know that if we were to develop anything similar to nazi eugenics they would require damn good marketing to make people neglect thinking of it that way, and Autism speaks has been filling such a marketing role perfectly, they would need to create permission to perform an atrocity, Like what bush did with iraq.

Aghogday, I have read your posts, and while I acknowledge the development of such things would be complicated, it would not be impossible. The vaccine for polio was once considered complicated, but they worked on it, and developed it, and if the man who developed it was selfish and actually patented it, he would easily be one of the richest men in history, and the corporations know that. They are constantly looking for the next big cure for the next big epidemic, and thanks to AS marketing, autism is the next big epidemic.

I also hardly consider it coincidental that the diagnostic criteria for autism is becoming more succinct/excluding more people. I doubt they actually care about getting 100% accurate screening through the prenatal test. The more diagnosed the more it would seem like an epidemic/bigger profits

Finally, before anyone tries to argue that the FDA would intervene, the FDA like other government agencies is already in the pockets of corporations. If the FDA actually did it's job properly Monsanto would of been out of business years ago.


Now as for the immediate actions of Autism Speaks.

http://www.disabilityandrepresentation. ... sm-speaks/

but more disturbingly there is this

http://girljanitor.tumblr.com/post/4677 ... se-ableism

Autism speaks has become a well oiled machine for positive awareness for people across the spectrum. The creepy messages are in the past. Serious concerns remain, that cannot be ignored for what is a full spectrum. Examples of that are numerous but here are just two. Hundreds more can be found with a Google search on the organization's efforts in the last few years.

http://www.autismspeaks.org/what-autism

http://www.autismspeaks.org/hacking-aut ... ant-to-say

The links below provide much more detail as to why either definitive causal factors or prenatal tests are beyond the potential of science, as there is no reliable diagnostic criteria for any one form of autism.

There are also details as to why 70% risk in the current developed post natal genetic test in the real world means a two percent instead of one percent risk, in the general population.

I don't expect one to take my word for it, so here are the evidenced links from a very respected Autism research scientist, by both those inside and outside what some describe as a "neurodiversity movement". If one still believes there is a real possibility for a definitive prenatal genetic test after reading this, one must understand something that this reputable autism research scientist does not understand. He is a fear buster, worthy of recognition.

http://crackingtheenigma.blogspot.com/2 ... utism.html

http://crackingtheenigma.blogspot.com/2 ... usion.html

http://crackingtheenigma.blogspot.com/2 ... o-get.html

The new DSM5 criteria, is one that Autism Speaks has fought to be more inclusive of people on the spectrum. This is one area of concern that neither Autism Speaks or the government has much influence over, as it is an academic decision by members of the APA.

To this point in time, that APA effort has created a significant amount of chaos in the diagnostic world, in defining a disorder, that almost anyone could be diagnosed with at some point in their life, given the right environmental circumstances, and the right diagnosing professional. This includes a simple editorial error from 1994 to 2000, that allowed a person, technically, to be diagnosed on the spectrum with only impairments in RRBI's.

The comments of offense against a representation of lack of eye contact, in the link provided, are simplified and directed at the eye contact, but the representation in that video helps to defeat the stereotypes specific to only males have these issues, and females are only shy when they exhibit them. As well as what lack of eye contact means in the larger context of non-verbal impairments, currently not a mandatory part of diagnosis, but one that soon will be mandatory.

The video portrays a computer model, which is an ethical way of showing human behavior associated with non-verbal impairment in communicative posture, facial expressions, and lack of eye contact together that make an impairment instead of reduced eye contact in everyday conversation, that can be specific to cultural context, and is a common part of human behavior in the general population. Some of the comments of offense have been explanations that people look away when they think.

That is not a behavioral impairment, that is an issue of focus and concentration, that many people in the general population exhibit in looking away from others in conversation.

There is even a lack of awareness about what lack of eye contact really means as an actual behavioral impairment, representative of what is defined as Autism, among those identifying on the spectrum, that may not have that impairment, as again it is not currently a mandatory one for diagnosis.

The complaints about that video, in the link provided, well illustrate why there is a need for awareness/educational efforts like these, provided in part, by technological advancements.

http://autism.about.com/od/whatisautism ... ontact.htm



The issue of Amanda Baggs and her hospital experience is completely within the realm of her personal experience and the hospital administration and policies. It has absolutely nothing to do with Autism Speaks.

I'm not sure what the purpose of providing that link was for, unless one is suggesting there is some kind of Autism Speaks link to her issues with that hospital's administration and policies. There is absolutely no evidence of this. I personally do not think her private issues, should be used for political attacks against a charitable organization, completely unrelated to her issues.

So far, this is not the first suggestion of that I have seen. I reported her problems here, recently, in respect for her as a person for those that care about her.

And finally to all the offense expressed over the April Blue Bulbs, in the "Light it up blue" awareness campaign for Autism".

This awareness campaign impacts 7000 landmarks, globally. There are over a thousand charitable organizations in the US alone that help people on the spectrum.

Autism Speaks mission is one of research, awareness, and education. There is about 2 million dollars reserved for direct family support. That direct family support is more than any one national advocacy organization does for families, but it requires over a thousand charitable organizations, family, and government support to meet the actual 137 estimated billion dollars for support required each year for people on the spectrum.

If autism Speaks donated all 55 Million dollars they raise a year, it might buy a dinner for one at McDonald's for the two million people, just in the US, estimated diagnosed on the spectrum.

The "Light it blue campaign" brings one word to the table for some that might not have existed before, and that is the word Autism, not Autism Speaks, as one they will remember long after the awareness effort is over.

There are likely over a billion people worldwide taking notice of this awareness effort. All these people are effectively greater potential contributors to their local charitable Autism related organizations, globally, in part, because of Autism Speaks success in providing this awareness as the loudest cheerleader representing a team of thousands of organizations that help people on the spectrum.

Some people don't want to be part of the combined effort. That is a perspective that should be respected.

However, criticism of Autism Speaks is rather shallow at this point in time, considered the depth of that organization's beneficial efforts to help people worldwide on the spectrum. If only, because of the organization's successful cheer leading efforts, to raise the kind of awareness required for continued efforts to help people on the spectrum.

Since the organization came onto the scene less than a decade before, worldwide support for people on the spectrum has increased exponentially. It would be impossible to shame the organization for that result, simply because the positive results are clear for all to see, who care to look.

Autism Speaks does a lot with 55M dollars, annually. It is clear in the annual report linked below. It goes well beyond the social cheer leading associated with the current successful global awareness campaign.

http://www.autismspeaks.org/sites/defau ... nal_03.pdf

I don't support the organization, financially, but if it were not for the Autism Speaks awareness campaigns, I would have never gained awareness of my local organization, that does a lot for people on the spectrum in my local area. Many of Autism Speaks efforts can only be measured by word of mouth.

This can be the most powerful method of awareness that exists in any social population of humans. It has now been extended to an online avenue of communication globally, with blue lights of landmarks and blue lights in pictures of landmarks on the internet for a large portion of the world to become aware of. In part, it makes for another day with more dollars of benefits for others in need.

aghogday,

ASAN does a lot of positive work as well. I suggest that the primary reason that ASAN is not as visible or as popular as Autism Speaks is because ASAN is by, for, and about autistic people, whereas Autism Speaks is not. The so-called "Autism Community" is dominated by neurotypical parents and professionals who deal with autism in some capacity. Autistic people are often, at best, tokenized. I do not think ASAN's relative popularity or lack thereof has anything at all to do with their anti-Autism Speaks stance, and having interacted with actual members of ASAN (and in this case, this includes Ari Ne'eman although not on a personal level), I have seen a lot of their work that is not about Autism Speaks at all. One acquaintance of mine in Texas is involved in ASAN there, and has been involved in many things that go well beyond the "rivalry" between these two organizations.

I don't think your defenses of Autism Speaks as an organization have ever really addressed how Autism Speaks does not really facilitate self-advocacy for autistic people, and how autistic people's needs are not fully addressed. They don't devote much money to helping autistic people directly, but instead focus on studying etiology and other issues. Also, Autism Speaks is not a business, it is a non-profit charity. They function according to different rules and do not work like a profit-oriented business. If Autism Speaks really is a business-oriented organization, something is seriously wrong with how it is structured and functions.

I've never suggested that ASAN is a negative organization, overall, and have always promoted the positive aspects of that organization. As stated earlier no one organization can possibly meet the needs of all people on the spectrum.

It is not people, overall, on the spectrum that have the financial resources to donate to the important missions and goals of any advocacy organization. Therefore, to attempt to combat that potential source of funding through signs and protests at other volunteer efforts of contribution, where those resources do exist, is counterproductive, to the potential for charitable contributions, toward the positive missions and goals that ASAN achieves.

ASAN could achieve much bigger things with a cooperative effort that did not name the "Parents", and associated family members and friends with the substantially deep pockets as an abstract entity of enemy. That overall demographic can afford to support more than one organization of positive intent.

Autism Speaks admits to running the organization on business principles that can certainly be utilized in marketing, human relations, and other elements of business, when they are used in an ethical manner, regardless of non-profit status. The profit element in this case is the "profit" of helping others, through a non-profit effort.

That result can also be measured in dollars of efficiency. It's highly unlikely the organization would be this successful without the business expertise from a President of a major TV Network in the US, that founded the organization or without his influential business friends.

The same is true for the private sector Simon's non-profit foundation, and it's billionaire benefactor providing close to three times more in research funding for Autism, than Autism Speaks.

If there were more people with the resources and business expertise, that volunteered their efforts at the end of a profitable and successful career to help others, not just themselves and immediate family, the world would be a better place to live in for many people.

As you may have surmised by this point, this is a special interest of mine, that I collect facts and figures for. I do not have the same emotional investment in this issue that some others have. I understand that influences the opinions and perspectives of others much differently than mine.

I still cannot support a group that advocates that people like me, matter how high functioning, no mater how well off are all better off having been aborted. That society would be best off if we were all dead. That is what Autism Speaks advocates in its PSA videos.

FYI support helping those who are truly most affected, even finding a cure for them. Those who cannot speak, who have such function. But the idea that we all need to be eradicated is sickening to me.

You know, this unfolding novel is nice and all, but I really posted under the assumption that this was all understood and that the fact that the majority of us hate AS (as well as the reasons for which) had become a given by now. I don't know, maybe some people need this venting still, but I really think all this factual discussion really is beating a dead horse. That's why I didn't find it necessary to put anything of serious nature in my original post.

Simply put, some of the reactions here actually puzzle me.

I was just admiring the lovely snake. I didn't read very much of it.

Well, that's not its purpose. Its purpose is to study the medical side of autism, which is something very useful imo. It's not Google's position to primarily be about advocating for autistic adults either. Google focuses on other things, like search and software development. Does that make Google an evil company?