Curious: What exactly do we hate about Autism Speaks?

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http://www.wrongplanet.net/postp4183567.html#4183567

If they get the VP to admit he was wrong and get the debunked books and websites off their pages, I'll believe it. You gave me a statement they had on their website for almost forever.

i'd tend to agree. and they have a guy on the leadership board called dana mcmarnane who suppots it.

http://www.wrongplanet.net/postp4183567.html#4183567


The parents are better off getting advice from a qualified physician about their concerns, than to go it on their own, with their own potentially dangerous beliefs against vaccines.

I suppose Autism Speaks could have ignored those parents that continue to have those fears that visit their website, but the only advice they are going to get from a reputable physican is the consequences of not getting vaccinated outweighing any potential risk, as is the same advice given to any other parent that is concerned about vaccines. They are more likely to convince these parents than any direct statement that autism speaks could make on their website to address their specific concerns.

In every vaccination effort a minority of those that get vaccinated in the general population develop illness, because of some underlying cause that is not apparent in the rest of the population, whether it is a deficient immune system, or other physiological cause. This applies to autistic children as well as children that aren't autistic.

There have been reports on the AFF site from parents that are members there, that have children with autism, whose children did get sick after the vaccination, and the autistic symptoms were more pronounced.

They understand though that the autism was present before the illness, and that the illness didn't cause the autism, it just made the symptoms more pronounced. This is the research that is being supported by autism speaks; what medical reasons within these individuals have that may cause them to get sick after taking the vaccine.

There is a big difference in the disproven theory of vaccines causing autism and the potential that vaccines might trigger the onset of symptoms of Autism. If there is an underlying biological mechanism in the child that predisposes a minority of autistic children to be more succeptible to getting sick after being vaccinated, it is a worthwhile endeavor to try to find that underlying mechanism, just as researchers do in other groups of individuals that become ill after getting vaccinated.

All of this is addressing the realities of the situation; those parents with concerns do still exist and need appropriate advice that will lead them to a proper decision to have their children vaccinated, and there are some children with autism that do get sick after vaccinations, which is an issue that is worthy of concern, and further research.

I don't see either of these realities as ones to be ignored, if one is concerned about the children actually getting vaccinated, or the minority of children that do get sick after getting vaccinated.

The statement was issued on their website in January of 2010.





http://www.autismspeaks.org/science/policy-statements

http://www.autismspeaks.org/science/science-news/nichd-director-dr-alexander-discusses-need-more-research-environmental-risk-fac

The interview in question that the VP was connected with was with with the director of the National Institute of Child Health and Development, Dr. Duane Alexander, and Chief Science Officer Geraldine Dawson at Autism Speaks.

It was Alexander's opinion as it is Autism Speaks opinion that subgroups of individuals with Autism should be studied for potential genetic and biological underlying conditions that may be associated with some individuals response to the vaccine, in the onset of symptoms of ASD's.

This is in alignment with Autism Speaks policy as indicated in the statement that I provided on their website. The only thing in question was the VP sending the interview to, Kirby, a guy that had supported an anti-vaccine viewpoint.

The interview was not an anti-vaccine interview it was with a highly respected individual that was the head of a national institute. I could see a significant issue if he sent something that was not in alignment of the official view of autism speaks that was part of their website.



Anti-Vaccine folks are not in agreement with Autism Speaks official Pro-Vaccine stance, and have suggested they are part of a conspiracy to cover up the issue.

Autism Speaks has a clear disclaimer on the part of their website that lists books and websites related to autism that they don't support or recommend the information provided in any of those books or websites listed on their website.

They are all third party sources. I suppose they could censor all references to the vaccine controversy, but that could lend credence to the belief that some hold that they are trying to cover up a problem with vaccines, with their pro-vaccine stance.

Dana Marname is a woman who is the Vice president of Awareness and Events, who did the interview here recently with autism speaks. She supports the official stance Autism Speaks as well as the Vice President Peter Bell, that is Pro-Vaccine.

These individuals may have had different points of views before the previous research on vaccines and autism were debunked, but all those that work for the organization, support the current official policy on vaccines which is a pro-vaccine policy as supported by their Chief Science Officer Geraldine Dawson.

And, as quoted in the last post, the head of the National Instititute of Child Health and Development supported the limited research that is being done now on subgroups of children with autism that may have underlying biological issues that cause them to be more succeptible to effects from vaccines.

You made the same mistake before. I have never suggested that parents should not consult doctors. Autism Speaks would like frighten parents into consulting any anti-vaccine "doctor" (that is still left - e.g. Wakefield, who is now only a self-styled doctor).

Changing the wording from "vaccines cause autism" to "vaccines trigger autism" is no change at all. Correlation (even if that were true) is not causation (or "triggeration").

Would you care to give any reference to a study (preferably not funded by Autism Speaks, or any of its tentacles) that shows even correlation between vaccination and the onset of autism?

You suggested autism speaks was using vaccines as a scare tactic to frighten money out of parents. My response was to that statement, into showing that their statement was a reasonable one, and not an attempt to use vaccines to frighten money out of parents. You provided excerpts of their statement to precede your opininon. I defending those statements as reasonable ones, that where intended for the benefit of everyone listening, not some kind of scare tactic to get money.

Maybe there are anti-vaccine doctors where you live, I understand there are some clinics in the UK that have or actually still do support chelation therapy for autism, but only a practicing physician willing to lose their medical license would suggest to a parent not to get their child vaccinated, without an empirical reason to do it, in the US.

In, short there is no realistic concern that someone is going to find an anti-vaccine doctor in the US, which means Autism Speaks doesn't have a realistic ability to frighten them into doing such a thing, if they wanted to.

It's not an all around statement about studying links between autism and vaccines, it is a specific statement that recognizes there are still some areas of concern to study related to the issue of autism and vaccines, that are recognized by respected medical professionals, per the recommendations of the director of the National Institute of Child Health and Development, as provided in the previous link.

That is the acknowledgement of science in pursuing areas of concern that may be an interest to public health, there are no proven causal links between autism and vaccines; they make that distinction clearly, in the recommendation that parents should vaccinate their children.

There is nothing to fear in research except when it is fraudalent as Wakefields's research was found to be. There is no research that Autism Speaks has funded that has found to be fraudalent, it has to this point been respected research that has been peer reviewed and accepted.

If there are no associations in subsets of autistic children underlying their succeptibility to negative impacts from vaccines, the research will likely show that, and any remaining concerns that may exist can be extinguished, from a scientific perspective.

Parents that hold an anti-vaccine opinion hold that fear through reports of other individual's experiences with their children and autism.

This fear was present first, before any potential causal connections were considered worthy to pursue by science, longer than a decade ago.

Some of these parents and other individuals are upset that Autism has moved to a Pro-vaccine stance; continued research into actual scientific concerns that linger is more likely a small area of comfort for them than a fear or perceived scare tactic to try to get money out of someone.

I provided evidence that the research was considered credible and recommended by the head of the national institute of child health and development, who was intent on making it clear that no causal links have been found.

Proven scientific causal links, correlations, or associations don't exist with vaccines and autism; neither autism speaks, that director, or anyone else reputable in the scientific field is suggesting they do exist. Is it possible that some association exists in subgroups of autistic people? Only research can provide that answer. Speculation will likely gain more fear, than actual scientific research that provides peer reviewed results. The research is ongoing to provide potential scientific answers.

I think you need to read the Autism Speaks website.

That's were I got their policy on vaccines from. Fear tactics in association with vaccines is the point I don't see as a reasonable one, considering that specific statement.

The organization definitely presents the negative aspects of autism, to appeal to the emotions of supporters in general. As with all negative things in life, anxiety and fear are a part of those emotions that are a result of that type of marketing, common in all charitable organizations related to medical issues: heart association, lung association, etc.

In this case the fear of parents regarding vaccines was well in play before autism speaks came onto the scene. That fear lingers, through fears of conpiracy for some that there is still legitimate concerns related to vaccines as a direct cause of autism, rather than than genetics and associated factors. There are those that clearly oppose Autism Speaks official policy, that speak on the site support page.

The thousand or so parents that have reported their children's autistic symptoms became pronounced after they fell ill from vaccination, is definitely a cause of concern to them, and the two have not been proven as linked in anyway. There is still a small area of concern, that on an objective basis, some scientists believe is worthwhile pursuing.

However, the idea that they are pursuing it as a scare tactic, makes little to no logical sense. It is the parents who are already scared, some of which firmly believe that there is a direct link, because of what they have personally observed in their own lives.

If research can clarify any remaining areas of concern, that seems like it would be a good thing, to hopefully convince those that are still not convinced that vaccinations aren't directly associated with autism.

Indeed you did, and failed to read it.

Having just spent some time perusing their site, which I do, from time to time, just to see if their approach has changed, I find it has not. E.g. their favourite treatment is still ABA. Autism is still likened to cancer. Their meaningless slogan is still "Autism Speaks. It's time to listen."

Oh, and don't forget to search for "chelation", plus look at the 389 of these:
http://www.autismspeaks.org/health-services/dan-practitioners

In case you don't know them... http://en.wikipedia.org/wiki/Defeat_Autism_Now!

I am already familiar with all this information, but I have pursued it beyond the walls of Autism Speaks, and the opinions, I have heard here, based on how they impact individuals that have no serious disabilities with autism vs. those who do, and those that care for those that do.

None of this has anything to do with their policy on vaccinations that I was discussing. The organization neither supports or recommends chelation or the DAN method of treating autism. In fact people that support that organization have been at odds with Autism Speaks for pursuing genetic research instead of environmental research, including the founder's own daughter.

Autism Speaks provides third party reference materials that they do not personally recommend or support just as other national autism awareness organizations.

One can find the same third party reference materials about DAN on the Autism Society of America website and the National Autism Asociation of America, but it doesn't mean those organizations support or recommend that approach for autism treatments either; it is only a third party for reference, for individuals to make their own informed choices with, as Autism Speaks recommends in their disclaimer statement.

Your quoted reference material that are part of hundreds of other resources for autism, off of their website that quote the disclaimer below at the beggining of the search for these resources on their webpage.

http://www.autismspeaks.org/family-services/resource-guide



As you stated earlier association does not mean causation. Just because there is a book or a website associated with the autism speaks website doesn't mean autism speaks supports or recommends that book or website. In fact, they specifically state in legal terms that they neither recommend or support the information in those third party reference materials.

Chelation is not an FDA approved treatment for Autism, and there is nowhere on the Autism Speaks website that states they recommend it or support it or that they recommend or Suppport the DAN methods of treatment. DAN has been associated with this treatment in the past, but that has nothing to do with Autism Speaks. DAN has been in existence since the mid 60's, almost a half a decade before Autism Speaks was organized.

ABA is a widely accepted treatment method for autism in the US, covered by Insurance companies. Autism Speaks lists it on their website along with all of the other treatments accepted as effective in the US, for reference.

They don't list it as any more important than any of the other treatments or therapies. They do, though support the push for additional insurance companies to cover the treatment in the US, which many people in the general public support as well.

Not all people respond well to ABA, that is widely understood also, and reported as well on the Autism Speaks website.

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



This is a statistical comparison of incidence between different health issues, not a comparison between the conditions themselves or the severity of the conditions.

In general people are familiar and understand how prevalent AIDS, diabetes & cancer is in the general population, it is simply an analogy to help people understand what 1 in 110 mean in terms of the real world. Statistics don't impact people that much that don't do numbers, but they are familiar from everyday life how prevalent AIDS, diabetes & Cancer is from real life experience..

I understand how some could read this literally and think this means that autism is a disease like Cancer, because those health conditions are in the same sentence, but that is not what the sentence means.

It is not though, intended to portray a positive message about autism, it is intended to portray a message of concern, appealing to emotion, to gain financial support, to research autism. And if one has no struggles with their Autism Spectrum disorder, or symptoms, those are not the individuals that the concern is directed at. They make that clear in their mission statement.

The same thing with the "Autism Speaks" phrase, it's not for people that don't struggle with autism, it is for those people with autism that do not speak, and do need assistance to communicate their needs to both their parents and the world.

They exist in the hundreds of thousands, per Government statistics in the US; many of their concerns may not be heard, but along with the parents of these children, the organization was founded for that purpose.

I've read all of this before, but I've read the disclaimers, and taken the time to study how these views are understood by some in the autistic community as well as how they are understood in the general public.

Autism Speaks is directing their appeals of support to those that have the means to financially support the organization, if that message is not effectively presented to motivate people to donate, the donations don't happen. It's that simple.

The same message that might completely please people that don't struggle with Autism, is not likely going to be effective in fundraising to meet their goals, for those that aren't pleased with negative problems associated with Autism.

They have toned down the negative emotions, some, from their statements because of criticism, but they can't turn it off, if they want to successfully fundraise.

Marketing is a science, and if one goes against the science, the message doesn't work. There is nothing evil or wrong about this, it is just part of human nature that has been studied, and is understood, and practiced in marketing, in most charitable causes.

How much money would Unicef raise if they showed happy healthy children? How much money would humane associations raise if they showed happy healthy energetic cats and dogs? It's just common sense.

If one doesn't want to see the negative aspects associated with Autism, the best thing to do is turn the channel, just like one does when they don't want to see the Unicef commercial. There are other folks that watch it, find concern in their hearts, and donate money.

Some of these kids with autism that are truly disabled, may benefit, from that effort in the future. That's the only thing that I see that counts. If there were no effort at all there would be no potential of benefit. If one wants to only see the positive aspects of Autism, Autism Speaks is not the organization to support.

That's because the same person founded DAN! and the Autism Society of America, and the NAA is an anti-vaccine organization, just like DAN!. I don't even know what to make of that bold part.



Isn't taking books off the reference list because peer-reviewed articles (which you claim to hold in high regard) have debunked them keeping things up-to-date?



That's to cover themselves, and you know that. That information is false and dangerous, but for some reason you think it is OK to disseminate or make available that information to scare parents. That's not right at all.



Except juvenile AIDS, mentioned in the I am Autism video, is not really prevalent in America. It was a scare tactic, plain and simple.

If you know the information is false, take it down. Every point you bring up is a talking point for anti-vaccine advocates, and enough money got wasted in autism research with their antics, but apparently you don't care if it continues with their sources that, once again, got debunked by peer-reviewed articles and reputable scientists...

If you are not a representative for Autism Speaks, don't try to explain why the VP should be let off the hook. What things has Autism Speaks done wrong recently, if anything? I never read all your posts, I'm asking honestly.

point number 1.i dont get why people argue about whether autism is or isnt a disease.diseases are caused by viruses germs and bacteria if something is not caused by germs r bacteria or then it cant possably be a disease.if your into autism pride you would then say autism is not a disorder or disability.second why do people care if autism is called a disablity or not

My point is that Autism Speaks actively supports the vaccinations of children, which is proven on their website. I don't agree with some of the books on their website and treatments supported in the referenced information, but they clearly are not endorsing any of the opinions in the third party referenced sources they provide, and as they clearly state in the information quoted below the proven benefits of vaccine outweigh any hypothesized risks.

I'm a strong proponent of vaccines, so if it was up to me books that question the safety of vaccines wouldn't be there. My suggestion would be to remove them. I can only guess that the reason they are still there is not to further the current conspiracy theories that some have that Autism Speaks, the CDC, and Pharmeceutical Industry, is trying to cover up problems with vaccines.

People that support the anti-Vaccine ideology, in general, are not happy with Autism Speaks, Pro-Vaccine stance. Autism Speaks reports the Institute of Medicine's finding, part of the Academy of Sciences, a non-governmental organization, that backs up the proven benefits of Vaccines, over any hypothesized risks, and their policy on vaccines, in the quote provided below.

Neither the Autism Society of America of the National Autism Association, promote vaccine usage the way that Autism Speaks is currently promoting it.

Autism Speaks is leading both of these organizations in providing credible information and supports the research that the CDC has done.

Both of those organizations, from what I have seen on the websites, question whether or not the CDC research has been biased, and suggest further research is needed, but in neither case do they advise parents not to vaccinate their children.

I'm not seeing any concern at all with the information you provided about the VP other than being involved with a guy that had an anti-vaccine point of view.

The interview he forwarded per your information, supported the fact that no causal links have been proven between vaccines and autism. The criticism you presented from your resource doesn't point out that fact. You and the individual that crafted that article are apparently seeing a hook of great significance that I'm not seeing, based on the evidence from the actual interview that was forwarded.

That interview provided precisely what areas of concern the National Institute of Child and Health Development Director felt were valid areas of concern for continued research. This supports science, there is nothing in that interview that was based on fraudalent information.

And here is more of the research that Autism Speaks presents on their website in support of vaccines.

http://blog.autismspeaks.org/2011/08/26/message-from-the-chief-science-officer-regarding-the-institute-of-medicine%E2%80%99s-report-on-adverse-effects-of-vaccines/




Regarding the statistics on the prevalence of Aids, Cancer, and diabetes, it is a combined prevalence that is measured not the prevalence of either of the three taken by themselves.

And as I stated before it is an emotional appeal, but some have suggested that they are actually comparing the gravity of these illnesses with autism, which is reading something into it that is not there.

They are attention grabbers for sure, but that is what all charities do, they provide information that appeal to people's emotions, where something is viewed as a risk, fear is the emotion that is appealed to. If one doesn't see the problems associated Autism as a reason for concern, it would certainly be viewed as a scare tactic, but it comes across as a concern, for those that understand that there are serious difficulties involved that many experience with Autism.

The line they recently used in a Time magazine was that a child's chances of becoming a professional Athlete were less likely than the chance that they would be diagnosed with Autism.

That is a more acceptable image for children to read that might pick up a time magazine than the mental imagery of Aids, Cancer, and Diabetes, that might confuse a child that is aware they have autism looking at one of Autism Speak advertisments in a Time magazine.

I've seen the mistakes autism speaks has made in their PR campaign with the I Am Autism Video and Autism Everyday Video, in presenting a picture of autism that might not only be offensive to autistic adults that don't have the serious disabling effects of autism, but also those children with those disabling aspects, that the videos might instill fear in, if they happen to see them. That was years ago though.

Currently, I'm not seeing any mistakes of reasonable concern, regarding the fulfillment of their mission, other than the wording they use in their PR campaign that some see as offensive, like epidemic, that was recently removed from one of the parts of their website.

I doubt they are going to ever please anyone with autism that does not want to see the negative side of autism that they present, to appeal to people's emotions, for concern and support.

For the sake of the children that might see some of that PR campaign, I'm personally glad they have toned it down some on the negative portrayals, that could indeed be seen as scary ones by children.

And no I'm neither a financial supporter or rep. for autism speaks, as I have already stated, if I were to personally support an organization that helps people with autism, it would be one that provides direct support, like the one in my local area, that raises about 4 million dollars a year, to help people with autism. They don't have the means though to do the research needed to help the autistic children of the future, so this is why I believe the role that Autism Speaks plays in providing reputable research is an important one.

Organizations like the Autism Research Institute ARI is pursuing alternative areas of research.

My understanding is that DAN was recently dissolved and has been absorbed by ARI. I don't agree with many of the areas of research that ARI is pursuing, but there are many that have been strong proponents of the organization since it began in the 1960's, helping to dispell the refrigerator mother theory of autism when it began as an organization.

From what I have seen from the Autism Society of America and National Autism Association, it seems like Autism Speaks is on the cutting edge of reputable science, in comparison, regarding vaccines.

I don't know of any other large national association for Autism that has hundreds of chapters like these organizations, other than Autism Speaks, that promotes the safety of vaccinations from a scientific viewpoint like Autism Speaks does.

Seems like they deserve credit for that fact rather heavy criticism for the efforts they have taken to promote vaccine usage. It is likely they have lost significant financial support from supporters for taking this pro-vaccine stance.

At least that is the objective evidence one finds if they compare the three websites.

Some have argued that diseases can be cured but disorders cannot be cured. It depends on the point of view or classification procedures one uses whom one talks to.

The international classification of Disease sponsored by the World Health Organization, ICD10, classifies many conditions under the general category of disease, however under that general category some of the individual conditions are still identified and labeled as disorders and/or syndromes.

All the major classifications consider all conditions in the Autism Spectrum specifically Disorders, not diseases.

In common language usage though the terms disorders and disease are sometimes used interchangeably to describe a condition that is technically a disorder.

People often refer to Schizophrenia as a mental illness, disease, disorder, or condition. Technically it is considered a disorder for classification purposes.

There is evidence that there is a genetic link to both Schizophrenia and Autism, however since the onset of symptoms often do not suddenly appear until young adulthood, many people look at Schizophrenia as an illness or disease.

The major point of contention with disability is that organizations that research biomedical causes of autism consider it a medical disability that is inherently disabling, whereas the opinion that the neurodiversity ideology holds that the social model of disability applies, in that society makes the condition disabling through lack of accommodation of a natural variation of the human condition.

I suggest that it is both an inherently disabling condition because of biological reasons and there are sociological factors that play a part as well in lack of accommodation for the needs of natural human variation.

Some can have the condition and do not consider it as a disability at all, nor do they consider it as an advantage over others, either.

Autism Supremacy goes one step further in suggesting that it is a condition that is not disabling at all, instead one that provides an advantage over all others. As we hear when people talk about the next step in human evolution, etc.

I think the reasons for all this confusion in terminology has a solid basis, and that is that there are so many different expressions of autism that vary from individual to individual, that have been viewed from the individual that is completely incapacitated to the depiction of Autism associated with figures like Einstein, and Thomas Edison.

People look at it very differently depending on which Autistic person or groups of autistic individuals that they relate to or can identify with in life.