Stop Bashing Autism Speaks!

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No problem.

i just finnished reading post on autism speaks actualy.a woman started with a bunch of b.s about vitamins and diets.however what she said about her son was great,she said she liked him just the way he is and couldnt imagine him any other way.i agree with everything about autism speaks but i also dont agree with totaly demonizing them.there are a lot of nice parents there

Curing autism is all good, but its like cancer, and just cannot be cured unless we have a quantum shift in the way we now live with processed foods, chemical and radiative stressors

They take the cash and say something is being done... warn a few couples that they're kids will have autism. I could do that

i meant to say i dont agree with everything A.S does.

What is Autism? That's a fuzzy area.

Is it motor development delays?

The inability to speak?

There are other factors in the environment that have already been connected with some of these issues, in some research separate from Autism, and in some research associated with autism.

Pthalates are a good example:

http://www.sciencedaily.com/releases/2011/09/110906085354.htm





Research provides some potential answers of what should be avoided in the environment. Without that research we would have no idea. A quantum shift in the way we live, isn't likely to happen unless there is some kind of apocalypse.

Meanwhile without research, it's not possible to understand why it is that some people with autism might have motor developmental delays and others don't? Why some never gain the ability for spoken language, and some speak proficiently from an early age?

It's already a widely accepted finding that hormones and brain development are associated with language development, and motor development.

An association now has been made between the chemical in plastics that has been a large part of the environment since the 50's; that we already understand disrupts the endocrine balance in human beings, and many other animals, that lead to anomalies in sexual development. Motor development, cognitive development, and social interaction behavioral problems have now been added to that list.

Without research, there is no potential to understand what environmental factors may be implicated in the more severe symptoms of autism, and what may be avoided in the environment for potential prevention of those symptoms.

Autism Speak and other government agencies, have the funding, and capabilities to research these areas and potentially pinpoint the environmental factors, in question.

None of us have either the resources or the capabilities to do this, unless we are directly involved with the effort. It's a vital effort, that can't easily be underestimated, in the reality of the potential impact of those environmental factors, not explored or understood well by serious scientific research.

Prenatal environmental factors, in some cases, could be the potential difference of whether an individual develops into a successful college student, and a successful individual in an area of life where their unique knowledge, skills, and abilities are needed, and an individual that never gains the ability for a high level of self care.

We don't stand the potential of understanding any of this without research.

And, without that understanding, the unique genetic aspect of autism that gives some individuals strengths in difference, may never be understood as something potentially separate, from the potential negative impacts from environmental factors that may create a more difficult challenge for others.

And, finally, without genetic research, it's not possible to gain a reliable understanding of what it is that distinguishes a genetic influence from an environmental influence.

That proves my previous point: Autistism Speaks does not speak for me, and I doubt they ever will.

So again, I have a problem with the group's name because it is misleading. They don't speak for me, and they apparently don't speak for many others who also have some form of Autism. I have no problem with them speaking for their kids/grandkids/etc. who are Autistic and cannot speak for themselves. But they come off like they represent any and everybody who is Autistic—and that just isn't so! I resent that they have created this image that misleads the general public. And because they have funding, they can churn out their propaganda without bothering to consult with Autistic people who can actually speak for themselves, and may actually disagree with the groups' agenda.



With all due respect to Tman, John Elder, and Alex Plank, I still say that they are merely token Autistics brought on board to say, "See, we do let real Autistic people have a say in things," just to appease the Autistic community and to get good publicity for their agenda.



Of course they wanted to get involved, because they see the same injustices that Autism Speaks is perpetraiting that I and many others see. The reason they have been criticized is not for their efforts, but again, because they are being used by Autism Speaks as token Autistics.



Again, I have no problem with that, but don't create the illusion that you speak for ALL Autistics, because you don't!



That is all fine and good, but when will they put a disclaimer stating that on the front page of their website, and in all their materials/propaganda???



OK, since you seem to be an insider, who do I/we contact to get further clarification and to voice our opinion/s???



This is a start…



All well and good, and we can both speak for ourselves, but I still protest against the public illusion that they speak for all of us. All I want is them to clarify who they actually speak for.



This thread is a necessity. Yes, the truth is out there, but the question is, will it come out through a willing transparency at Autism Speaks, or begrudgingly because the Autistic community kept digging for it until it hurt?

There are several individuals that have taken the effort to contact autism speaks, that have presented the results of that contact here on this site, through tactful efforts through their email address, that has always been easily found on the "contact us" section of their website. Every response by autism speaks has been reasonable and polite.

The fact is most haven't taken the effort to ask any questions, or get clarifications, on these issues.I think it's a good thing that you want to get your own answers, because from I have seen, it can be easily done.

The following is not in disagreement with your post, I respect your personal viewpoint of how you feel the organization is representing autistic individuals, I think it is understandable; here are some additional thoughts I have on the issue.

This is my personal opinion, that may be more detailed than necessary, but from what I understand of being an autistic person, an autistic parent, and one that has studied people and fairly complex organizations that were outside of my nature, my entire life, to survive, this is my take on what is a fairly complex, controversial issue.

In the beginning who should the organization have consulted from the autistic community before they made any decisions? Alex Plank, Temple Grandhin, Tony Atwood, Ari Neeman, Donna Williams, John Robison? Should these people have been selected to consult the organization, based on their notability? How does anyone know who was consulted, who wasn't, who provided input, and who didn't?

There is this idea out there that there has been no autistic input, or consultation with autistics, but there is really no evidence of it, other than no one in the organization has announced they had a diagnosis of some type of ASD, that worked for the organization, or was involved in such input.

That's information protected by the privacy act, the organization would not be at liberty to provide that information, if they are aware of it, and no one that worked for the organization or provided input to the organization would be required to release that information either to autism speaks, or the general public.

Everyone knows Plank, Robison, and Holman, have autism because they have disclosed that fact, And some don't; some have posted on this site, that they do not disclose it IRL, they don't see a need to or believe it is anyone's business, other than their own.

One thing I have already mentioned in the thread, is that research shows that autism is highly heritable, and it is likely that some family members of autistic individuals have autistic traits.

There are hundreds of thousands of family members directly involved in autism speaks efforts.

There are likely many individuals with autistic traits that have been involved in someway in the decision making process from the organizations beginning.

It's not something that can be proven, because we have no medical records for those hundreds of thousands of individuals directly involved in the organizations efforts, but I think it is pretty likely those individuals exist. Beyond this many probably have no idea they could be autistic, particularly if they have spent a lifetime adapting on their own.

This is what the organization says about autism spectrum disorders on their website:

[/url]http://www.autismspeaks.org/what-autism[/url]



It doesn't appear like they are attempting to hide any truths here, sugar coat anything, or make anything look worse than it really is. I'm not sure how they could have described it more accurately.

They are currently funding research to increase acceptance, respect, and support for autistic adults, it's evidenced on their website. I think it is overdue research, but it's finally here.

The problem is when one is portraying the difficulties of autism to raise money to resolve those difficulties one has to portray the difficulties, otherwise there is no clear reason for the public to donate to the cause.

The organization will have no potential of helping anyone, if people don't donate to the cause, that's the reality of any charitable organization.

And in the case of all autism spectrum disorders, there isn't much to portray about an individual with aspergers in everyday life that sets them apart from anyone else in the world, that one can consistently describe in an advertisement, that is not going to seriously offend someone with Aspergers.

There are some who have great difficulty in life, and some who have great success, it's not likely going to please those individuals that may be very successful in life to show someone at age 35, that has never been employed,never married, that rarely leaves the house, nor is it likely going to make those with extreme difficulties happy to portray it as just a difference to be accepted, lauding the success that some have had in life. Both points of views and concerns have equal merit.

If Autism Speaks is really concerned about the potential negative impact or stigma these portrayals might have on some individuals, a generalized statement about the autism spectrum on their website might be the best approach.

Those that are successful and announce the fact that they are autistic, provide evidence of that fact in the media. The other higher functioning individuals living at home with parents, that may not be employed, or rarely leave their home, are portrayed in the media sparsely, but it is something that the autism speaks organization has not focused on, that I know of.

I'm not an insider, I've never contacted the organization, just studied the issue in depth. Here is the contact information below from their website.

If you find out information that hasn't been provided on this thread, including the recent interview, I'm sure that others would be interested in those clarifications.

My main issue with the current state of the understanding of autism, is that no one understands the real prevalence of higher functioning autism in the US among children, or adults, because of limited government statistical methodology.

It was suggested early in this thread that the organization engage in that type of research, which may eventually benefit many people with higher functioning autism, more than I think that some may understand.

I don't think some understand how much of the problems with portrayal of autism spectrum disorders, has been that they have never been properly identified in the general population, in the US.

This is the first real focus autism speaks has placed on higher functioning autism, and I think it is the most appropriate area to focus on, above and beyond any attempt at displaying commercialized efforts to portray higher functioning autism.

No one even really knows enough about how individuals live high functioning autism in the general population, to properly portray the reality of it, at this point, I think.

The opinions here are not likely representative of the general population of higher functioning autism.

My sister was recently diagnosed with aspergers at age 50, and has been in the same job for 25 years, making over 70K a year, but she would never post on a website like this, because it's just not part of her personality. She posts pictures of insects on another website, instead. That's her method of communicating with the world.

There are many stories of higher functioning autism that autism speaks will likely capture in their new research on the prevalence of autism spectrums in the general population, that have never been told before. And much that can potentially be learned from those that have gained success in life.

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

It has offended all.

No, it does not.

there is no doubt that autism speaks is patronizing and insulting to autistic people,and trivializes aspies and hfa's.however this is clearly he result of parents who love there children.parents are often patronizing when there being over protective of there childen.this post is older than my dead grandmothers flatulance.does anyone have any original ideas

There are reports by autistic individuals, here on this website, that fully support the organization. This was well before they announced their current research initiatives, that are focusing on support efforts related to the adult autistic population.

So your statement, that it has offended all is refuted by the evidence that exists here on this website. I can provide links if you like.

Beyond that I've been to asperger support groups before, and there was not even any awareness that an autism speaks controversy exists, nor was anyone even aware that the website wrong planet exists.

If they are online they are spending there time somewhere else, concerned with other things; for many autism speaks is likely just a puzzle icon they noticed on someone's car bumper.

20 to 40 people posting here at a time, 5 or 6 on the AFF site, and others scattered here and there across the internet, and the 5 or 6 that even respond to an autism speaks thread might seem like alot of autistics that voice an opinion that they are offended by the organization, but it's pretty much representative of the likelyhood that most autistics that post here, could care less, one way or the other about the organization, if they even know that it exists.

Not likely the current research they are supporting related to adult autistics will have much impact on autistics in the UK, the US falls well behind the UK in support, in an understanding of high functioning autism, in the adult population.

However, if only one individual gets diagnosed with autism, from this effort, and gains the support they need in life for subsistence, because of it, in the US, it's definitely a positive iniative that can't be underestimated.

Even if it is something as simple as the ability to gain protection from the ADA, because of a diagnosis, when one was not available before this iniative was started.

It's much harder over here for individuals that really require support in life to get it, without some access to the medical care system, to get access to a diagnosis.

That's the importance of the research autism speaks is currently engaged in, in the US; there is no question of the potential benefit of this research to some autistic individuals, in this country.

i think autism speaks is wrong or not being inclusive to the high a mid functioning.i also think the asan has little for people other than aspies,and hfa's.i think both there agenda's reek of self centeredness and putting geting there way over the better good of the whole autism spectrum.lets end this stupid thread and work on a political agenda that equaly and fairly advocates all people with autism.

What ASAN does is good within their limited resources.

It's impossible though to create a political agenda that equally and fairly advocates for all people with autism, because their needs and opinions on what is autism advocacy are different.

And as this thread proves what most of the US considers advocation is not what all autistic people consider advocation.

Autism Speaks can't possibly please those that don't agree with their research mission. So, some of those people will likely never see autism speaks as an appropriate advocate, in speaking for their needs or personal opinions on autism advocacy.

However for those people that have not been identified with autism, and potentially are in desperate need of support, the research autism speaks is potentially vital to them, in the autism advocacy effort.

This thread points out those differences, and why it is that some feel autism speaks should be bashed, and what it is about the organization that is potentially beneficial to other autistic individuals, that aren't even aware autism speaks exists, asan exists, or that autism even exists.

Those people have no voice at all, in their opinion on autism, and I am advocating for them, because I was not too long ago one of them.

And also for those, like my child that could not speak at all, completely dependent on their parents to provide a voice of support for them.

No one organization can do it all. ASAN can't provide an avenue for parents to support each other and advocate treatment for their children, nor can Autism Speaks provide a community that all autistic individuals are comfortable to participate in, because of differences of opinion.

I'm sorry if this thread bores you or you think it is stupid, but I consider the issues relative to the politics of autism, and issues that are of relative importance to a few here that post; as long as people want to be involved in the conversation, as to why autism speaks should or should not be bashed, they should be able to be part of it.

As all other threads, this one too will die, when people no longer desire to respond. It already faded away once, until someone brought it back to life three weeks later.

In general, some of the issues specific to autism, not even associated with autism politics, have been the life force of this thread. Nowhere else could a thread like this, last as long as it has, except on a support site for autistic individuals.

Look at the Neanderthal and Autism thread in the Mathematics section. It's proof that it doesn't even take more than one person with a special interest to keep a thread going on this site, for half a year or more.

I might not always respond to that thread but, Anthropology is a special interest of mine, and I haven't missed reading a post there yet; close to 20,000 people have viewed that thread at one point in time or another. The one guy keeping it going, is far from the only person with an interest in that thread. He has created an amazing resource for that topic.

Autism speaks, and Autism politics in general, is not nearly as interesting, to me, as what he is talking about, but it remains a topic of interest for some.

the asan most certainly could do more for non verbal individuals,and neurodiversity in general.they most certainly could hire more non aspergian autistics.autism speaks can end there silly research and start puting people first.its pride,ego and self centeredeness on both sides pure and simple.its the mid functioning that is hurt the most

I think that is what we are doing.

Autism Speaks chose the parents of non verbal children, which does not stand up considering that they are basing their numbers on Third Graders in Special Education. While they may have a developmental delay, they are functioning in public education.

By the numbers they use, the reality is much different from what they describe. That being that 1 in 110 will need lifetime care in an institution. Only if Fourth Grade counts as an Institution.

This is Marketing misrepresenting their own numbers.

New and improved lies are still lies, and those who have misrepresented a material fact for personal gain, are still the same people, with the same reputation.

I see ASAN as an effort to control those who speak for themselves. Leadership provided, and a Party Line. All Opposed say, Yasa Massa.

Each claims a section of Autism, neither is democratic.

Charity Politics aside, Autistic people exist. Like all people they do not fit neatly in one class, or stay in one class. HFA, Asperger's, are very likely to be in Special Education. Later they may move to Gifted Education.

While some claim only the Official Disabled count, those meeting two criteria, and only scoring a 90 on the third, are not Offical Disabled, they just have problems.

One of our downunder friends posted the whole range, about a dozen criteria, which only three have to be met, and the range of function on each.

I was shocked, thinking myself very functional, when I scored badly on all of them. The same for online tests posted here, I am not a borderline autistic.

I think it the same for many others here. with or without Dx, we still have problem areas of function, and a few places where just from natural talent and nothing else to do, we excel enough to get by sometimes.

No Children's Charity, or University Students for Special Treatment, comes anywhere near our needs.

Of the dozen criteria used to define Autism, most are not life disabling disabilities for me, only 25-75%, where even at my best, the 25%, I am barely functional, and for most, I seem Mind Blind to the whole subject.

There is a lot of range outside the DSM, where those not meeting the three Criteria, almost meet the whole dozen.

A Dx does not help, Pills and Brainwashing, Conditioning, do not meet my needs. That might work for those who have to deal with me, but do not answer my questions.

Autism is a lifetime condition and changes through time.

While the range has been defined, no one is doing anything to broadly address the problems caused by a "A Differance in Thought and Perception," except to say we are wrong.

As such, Autism is an impairment to a large group, where nothing is being done.

On Wrong Planet I have found a Culture of Autism, we are all different in the same ways. I am sure there is another side of the Autism Criteria tests coin where the same functions are performed in other ways.

I am not defective. While I do have lacks, I do have functions and a high IQ.

In a group of the autistic, neurotypicals report the same inability to function as we have in their groups.

Considering tens of millions fit my view of autism, with none of their needs being addressed, the vast majority are not being served by Children's Charities or University Students for Special Treatment.

Now the spokesperson for Autism Speaks and it's affilate will say why everyrthing I say is wrong.

I don't believe people can really fathom the wide range of abilities and disabilities behind these personal computer screens. The sheer differences and unique similarities makes for a cultural mosaic unlike one in this history of mankind. Like modern day Cyrano De Bergeracs, our digital messages flow through cyber space from a technological box. The messengers are unseen as the messages become associated with a degree of wealth and independence few of us truly have.

While it's beneficial and flattering to hear about the potential and present abilities of Autistics, we have to acknowledge the variety of challenges and difficulties that Autistics face day to day that others take for granted. Only than can we begin to realistically explore viable solutions and remediate the problems associated with adults on the spectrum.

Strategically, i see Autism Speaks moving toward research into Adults with Autism. Those who are influential have children coming of age THAT have limited available services so a natural progression will be to investigate and attempt to find solutions.

IF the Autistic Community wants implementation of these ideas or others THAN an organization specializing in such projects should be started or become a part of the Autistics agenda.


TheSunAlsoRises

First of all, I have never had any contact with any official representative from Autism Speaks, or any of it's affliates.

Google is my friend, it breaks myths, and establishes them. One can only do the best they can to discern them, through detailed research.

No one here or autism Speaks has ever described all of those 1 in 110 children identified by the CDC as having autism, as needing lifetime care in an institution. I invite you to present any evidence, if it exists, to back up that claim.

In fact, the description, I just quoted off their site, a few posts back describing Autism Spectrum disorders acknowledges those within the spectrum that function independently, along with the gifts they possess.

Some people diagnosed with autism will, and some already do, live in institutions, that's a fact. There are no hard numbers that illustrate how many, currently do.

The government estimates there is several hundred thousand youth moving into the adult population in the next decade some of which will likely need some support into adulthood.

For most it will likely continue to be support from family, as long as it is available. Others with subsistence support needs may find that support in residential care facilities, some of which have replaced some state institutions closed down years ago.

Your claims for yourself ring true, I would never question them.

But I don't think anyone can come close to understanding the totality of another individuals experience with autism, not even through an online discussion.

Without research into any understanding of who those other unidentified 10 million autistics that may exist in the population, some who may not understand they potentially have any form of autsim, or are even aware of what it is, there is no potential to address any of their needs.

As far as I know, currently Autism Speaks, is the only organization making a good faith effort to accomplish any part of that goal.

Simply, because other organizations do not have adequate resources, the influence to make it happen, or the understanding that it needs to happen.

Once the research is complete, the needs of some of those individuals will likely be met through the government, and other organizations and individuals, some not even associated with autism speaks.

Some needs may be as simple as the need for online support, and recognition that resources, like this website, exist, that could potentially satisfy that need.

The link to the test you are talking about sounds interesting. I'm sure some would find it interesting if you care to provide a link.

Last edited by aghogday on 07 Jan 2012, 11:26 pm, edited 1 time in total.