why we must be weary of autism speaks

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for those of you that don't know autism speaks is a charity that claims to help autistic people. But they never give any money to us. The site I linked covers the points that they have censored us, excluded us, represented us as being inhuman and not worthy of life, and attempted to make a eugenic pre natal test to abort autistic fetuses.

A site with reasons not to support autism speaks, Here.

Recently autism speaks made a statement in an interview where they said that they thought there was a conflict between the services that higher functioning and lower functioning people get. Well that may be true, but autism speaks doesn't hand out cash to any autistic people or their families, so the conflict is moot point. then, i noticed that people were sayin that we should love them because they said that they didn't want any more conflict. and apparently thats a reason to love them. if there ever was a fight between functioning levels they caused it. In their PSAs they always pictured the low functioning because that arouses peoples sympathy with the parents. never any high functioning people, still.
now if you support autism speaks i respect that. but why? why would you support an organization that says you are subhuman? why support an organization that is actively hating on you while telling you that they care? some people say that autism speaks has a lot of cash and that if we are friends with them we will get represented. well let me say something, the cash doesn't mean anything if its all against you. In fact autism speaks pretty much takes away your cash and fills their pockets with it. that whole ad campaign against autistic people gets them lots of donations out of pity, but people get prejudiced against us and then they don't hire us. so they are basically just taking our money right out of our hands.

and also, when someone tells you that you deserve to die thats a diss you can't take back slowly. I wouldn't trust someone like that with my future for sure.

Do you have a link to the full statement?

I think that the OP actually meant "wary" (cautious), but "weary" (fatigued) comes close enough.

Autism Speaks does not speak for me!

Just for clarification the information in that link is anywhere from 4 to 6 years old. And, it is still being circulating, with information about censorship of the production of a T-shirt that was admitted as miscommunication years ago, by the individual who reported the censorship.

Salaries, overall, have gone up quite a bit for all charitable organizations, since 2006; the salaries reported there now are below average for charities the size of autism speaks located in the northeast.

The salaries have kept pace with the average, but they are significantly higher in their last form 990, than what they were in 2006.

Some of the complaints are invalid, some of the links in the article are broken, and some of them are so outdated that they no longer make sense, in the context of the current reality of the situation.

Apparently autism speaks has not made many mis-steps in 4 to 6, years, since it appears no one has gathered enough information to provide an updated site such as this.

There is plenty of reason to ignore autism speaks, but no need to either support or worry about what the organization does; they are a relatively small part of the body of research that is being done worldwide on autism. And, one of over two thousand charitable organizations in the US, reported as associated with autism, from the guidestar2 chartible organization watch dog group.

It's interesting that ASAN has joined up with the Autism Society of America to argue against the DSMV criteria, as that organization still recognizes dangers of vaccines as a potential causative factor for Autism, supports the medical model of autism, along with research into other environmental toxins as potential causative factors for Autism.

I don't have a problem with anything the Autism Society of America does, but they focus on many of the same initiatives that the ASAN organization has argued against Autism Speaks.

It is good to see that apparently ASAN is breaking through barriers to work with Autism organizations supported by parents.

Some of the facts the Autism Society of America present for autism are almost a mirror of what Autism Speaks provides; that are argued against in the link you provided, and facts that have been argued against by the ASAN organization in the past.

http://www.autism-society.org/about-autism/facts-and-statistics.html

Last edited by aghogday on 02 Feb 2012, 5:51 am, edited 1 time in total.

Beat me to it. Weary is close enough for me to. I'm kind of weary of this discussion too (no offense), so 'nuff said from me.

What he said.

I have my own voice. I am capable of speech. Even some low functioning autistic people can communicate through typing.

Autism Speaks only speak for themselves.

The whole idea behind the catchy phrase "Autism Speaks", as clearly delineated on the website by the founder of the organization, was to provide a voice for disenfranchised families of children, like the grandchild of the founder, that lost his ability to communicate with the world, through regressive autism.

The founder of the organization never suggested they were attempting to provide a voice for autistic individuals that could speak for themselves. That's an urban myth, that I guess has been perpetuated because not many have taken the time to look at the website, to see what the actual intention of the phrase is, per the founder of the organization.

http://www.autismspeaks.org/about-us/founders-message





High functioning autism was not the motivation for the creation of the organization, it was children with regressive autism, and families that felt disenfranchised without a voice, because no one could explain to them why their children were suddenly losing their ability to communicate with the world.

The creation of the organization has expanded and now provides beneficial aspects to the rest of the spectrum, however limited they may be, in the form of limited direct support, informational and educational resources. And, now, through the recently funded, expanded research into the area of adult autism.

At the time the organization was formed Aspergers was understood as a rare disorder among autism spectrum disorders, that statistically consisted of no more than 5 out of 10,000 individuals, in the US, per available statistics.

Most every other organization associated with Autism has focused on juvenile autism, up until now, because it has been considered the focus that demanded the most attention.

That's finally changing as those statistically measured with autism in the past decade are moving into the adult population, resulting in focus spreading to that demographic.

As per the close to 50 page discussion that finally died several weeks ago, titled "Don't Bash Autism Speaks", the likely net result of threads here on Autism Speaks, is free advertisement for the organization for the many people that glance at the forums and gain knowledge that the organization exists, and potentially become a financial supporter of the organization after they do their own research, through third party watchdog groups.

That one thread generated about 13,000 glances.

Wrong Planet has probably been one of the organizations best sources of free advertisement through the multiple topics with that catchy phrase, "Autism Speaks", in the titles. Doubt many people take the time to read much of the content.

It is the same thing over and over again. As evidenced by the same general complaint link composed of invalid information, broken links, and outdated information, that has been used for about 4 years, now, on this site.

Meanwhile Autism Speaks as evidenced by their latest fom 990, has 340,000 volunteers, composed of friends and families of autistic individuals, working hard to help fulfill the mission of the organization.

Moving the organization ahead in a positive direction to help provide moral support for the segment of the autistic community, composed mostly of family members of autistic individuals that struggle more than some others, who may feel completely disassociated with the mission of this particular organization.

It is part of the reason there are more than 2000 organizations associated with autism in the US; no one organization can provide a mission that meets the needs or desires of all autistic individuals, nor should they reasonably be expected to do it.

Autism Speaks has laid out their priorities and their mission clearly on their website; there is no reason I can see to doubt it is any less or more than what they clearly state that it is.

They neither intend to speak for all autistics, nor do they intend to provide substantial direct support; that much is clear in the founders statement on the website as presented in the beginning of this post, and in their mission statement presented here:

http://www.autismspeaks.org/about-us/mission



This is how another organization respected in the general population puts it, in their guiding principles; the Autism Society of America, that ASAN has teamed up with to protest the DSMV criteria:

http://www.autism-society.org/about-us/guiding-principles/



And this is the growing base of that organization reported in their guiding principles, linked above:



They assert that they are the respected voice of the autistic community, comprised of the individuals listed above that support the medical model of disability.

Most organizations that focus on juvenile autism, have a similiar mission, yet the focus appears to be almost completely on Autism Speaks, among those in the Autistic Community.

It appears, in large part, due to a literal interpretation of the name of the organization, that is not actually the stated purpose of the phrase.

I don't think I've ever heard anyone state that the Autism Society of America doesn't speak for them, but they directly suggest they do; and the organization is a strong proponent of the medical model of disability. The founder helped create the Defeat Autism Now organization, and was responsible for forming the Autism Reseaarch Institute ARI, which has now absorbed the Defeat Autism Now organization.

It will be interesting if this organization can pursuade the members of ASAN that the medical model of disability is a vital one, along with the social model of disability, in regard to meeting the needs of all individuals on the spectrum. No doubt the Autism Society of America has a powerful voice, they have chapters in almost every state in the US.

They could definitely be of assistance in helping ASAN gain a voice for many of their concerns. As is currently the case with the arguments against the current DSMV criteria.

This is the kind of compromise and acceptance of differences of opinion between Autism organizations that is needed to enhance the support of concerns of individuals across the spectrum. ASAN should be applauded for this, I think. It's pleasantly surprising.

I'm assuming you mean that as sarcasm. Have any of their steps been other than missteps? (no hyphen required)
...

Aren't statistics good fun. I particularly liked "Fastest-growing developmental disability; 1,148% growth rate.", where the source is '“Autistic Spectrum Disorders: Changes in the California Caseload, An Update June 1987 June 20007(sic).” Cavagnaro, Andre T., California Health and Human Services Agency. State of California 2003 survey of developmental disabilities.' I wonder what the cherry-picked scare statistic actually referred to? So far as I can see, there has never been any change in prevalence - just changes in diagnoses and, in some cases, like silicon valley, changing population bias.

I don't see any strong evidence for autism being anything other than genetic. I do see some evidence for improving later life if understanding interventions occur early on.

(And I don't mean ABA or any related torture/brain-washing.)

(And the "interventions" word leaves me fairly cold. I'd much rather people replaced it with "supports".)

I can understand how grandparents would form an organization based upon seeing their daughter struggle with a grandchild (who also struggles daily with regressive autism). I can understand a fledgling organization focusing intently on a primary goal, making mistakes along the way, and growing as they learn more about autism and the needs of autistic people. Simply put, their focus was justifiably on one end of the spectrum BUT without a calculated attempt to hurt those on the other end of the spectrum.

Personally, Autism Speaks will not become(my cultural republican party), i look at the issues independently and as a whole to make my determinations.

Finally, with it's research capabilities and political power, like it or not: WHEN AUTISM SPEAKS, people NOT only listen, people hear.

TheSunAlsoRises

No, it's not sarcasm, that 4 year old link points out some misteps that were made in the past by autism speaks, and some misteps of some individuals in the autistic community, that shed light on misteps that turned out to have no substance. No one has pointed anything of significance since then, that I have seen, exact for the same old complaints

My point in providing the facts from the Autism Society of America, is the views across organizations and statistics presented are largely the same.

There is nothing that special about Autism Speaks that separates them from most organizations, in the US, except that they have the most financial backing and support so far of any autism organization in the US.

They have the funding to support a great deal of research, whereas other organizations like the Autism Society of America only have limited funding to support research initiatives related to Autism.

There is no way that autism is not impacted by the environment, in some manner, as a disorder.

Current Twin studies, using 192 pairs of twins, showed that the disorder is present at times in one identical twin and not the other, not on a rare basis, but in close to 50 percent of twins studied.

Previous studies quoted for decades were from homogenous groups of twins, that numbered at about a dozen at the most. Too small, to derive reliable results. The 10% environmental influence in those demographically homogenous studies has been refuted by the much larger heterogenous study.

Why is heterogenity a big deal? Because, the environmental influences that result from various subcultural behaviors are more complex, leading to the potential of a greater variety of environmental influences

It doesn't mean that the environment by itself causes the disorder, but at the minimum it influences the expression of genetics differently in one identical twin verses another, through a process referred to in science as epigenetics.

The environmental agent could be of natural biological origin or of manmade origin. Similiar impacts are created by both environmental sources of origin.

Epigenetics is a fairly new area of study in science, but it is a proven fact that environmental agents can impact the expression of genes in human beings.

Interventions can result from environmental research, in removing environmental influences that exacerbate the symptoms of autism that some struggle with, so the research is vital in that area in determining what those environmental influences are. It is potentially more of an effective solution than current ABA supports.

The DSMV is using the terminology supports, in their severity levels. Intervention results in supports. I agree that the term supports sounds kinder than the verb intensive term interventions. But, from a literal standpoint, supports can't happen without the initial action of intervention of somekind.

In my opinion there are too many factors to come to a solid conclusion that cases of autism that are severe, the ones for the most part, that are actually statistically measured in the US, are dramatically increasing.

Just the editorial mistake in the DSMIV in 1994, in the diagnosed cases of PDD NOS, likely resulted in many misdiagnoses.

Even the higher levels of autism seen in areas like silicon valley have been linked to greater awareness of ASD's and access to diagnosis.

I think the the greatest potential of increases, in western developed countries, is likely in mild cases, as a result of the inability of some to cope with the demands of modern culture. And, most of those cases aren't likely captured by the statistical methodology to date, used in the US. This too is an enviromental influence.

Environmental toxins have been prevalent in the environment in abundance, since the 50's, Many of which are controlled now, that weren't controlled in past decades, so that doesn't appear to be a singular cause for the recent statistical increases in the last couple of decades.

However, autism organizations can only provide statistics as they exist; it is the organizations that provide the diagnostic criteria, and the statisticians that develop statistical methodology to measure the disorders in the population that are responsible for the results that are quoted by third party sources like The Autism Society of America, and other Autism organizations.

As I've stated in other threads, this is the reason that the current research Autism Speaks is funding to measure the actual prevalence of all forms of autism in the general population is important.

It's an attempt to correct a limited government statistical methodology, that hasn't provided a full picture of ASD's, in the US.

You probably have money of your own, so you don't need their money. They aren't a hand-out organization. And they don't have the scale of money required to pay for the subsistence and care of all on the spectrum who are dependent. That's the government's job. That amount of money is and will be monumental, and it's cheaper to research and implement a cure which would obviate the costs now being incurred without cure. Stop screaming eugenics to get others to fall into line. I'm sick of you rehashing the same drivel.



Duh. Who else is going to get sympathy but those who are miserable and who aren't doing well? You pissed off that they're exposing the truth. You have enough super high-functioning attention elsewhere. You very high-functioners don't need or deserve any sympathy as you go on to succeed and make large salaries.



Prejudice means pre judging. That's not occurring. They aren't responsible for anyone not being hired. I blame you for having better functioning than me, for me having such a low and disgraced existence and the crappy eviscerating jobs I now have after years of unemployment and wasted education time.

You don't want squat to improve. You don't want early intervention either. I bet you only approve of crap gimmicky "therapies", with "supports" just being a bunch of uneducated, ignorant, low-wage women sent by social services of worthless governments, who just sit there doing nothing with the child, just acting important. With those "services", they won't be any less likely to grow up to have no status and success.

I suspect you have my position backwards.

I'm happy that the "intervention" of electroshock practised at the Judge Rotenberg Educational(sic) Center now seems to be done with.

I find gimmicky "therapies" absolutely loathsome.

I try to educate the "uneducated, ignorant, low-wage women(why just "women"?) sent by social services of worthless governments" to understand the difficulties of people on the autism spectrum, so they can supply genuine support.

Now that's a low blow. I think saying that trivializes the atrocities of that place.


I don't know what options you would leave open. Well, I wonder who has seen any improvement in services (or whatever you would call it) lately. I mean who else works in such services. Too many are too trusting in thinking that such services really work. I think cure will prevail eventually and I just want to make sure your side doesn't derail the effort.

i am definetly sceptical of autism speaks.i would say im sceptical of advocacy organizations in general.i also think autism speaks,asan and this website are continualy trying to pinch the mid functioning into nowhere land

lol cure. how will you know that the cure won't just be gimmicky and full of stupid women?