Stop Bashing Autism Speaks!

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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.

In one of these threads that ASAN issue was discussed, with someone that is involved with the ASAN organization.

Of course, ASAN hires no one directly, it's entirely a volunteer organization with a few small chapters throughout the US. And a few other international chapters around the globe.

Their explanation was that they can only provide job announcements from companies that approach them with those opportunities. They say they are looking into an effort for others without college education, still waiting, but it doesn't mean they won't come through at some point in time with those opportunities.

They also explained that their main focus was on disability rights,

KenG is the President of the ASAN organization in Israel.

The organization as a whole has some really nice people in it. He is certainly representative of the potential within the organization, shown in his dedication to advocacy efforts.

The organization raises little to no funds, so there isn't really much they can do for any autistics in the way of direct aid, except for their small chapters that offer morale support for some autistic individuals; and the disability rights, that their leader has made an impact in, on the national level.

The key point though on that organization, is that it is comprised entirely of Autistic Individuals, all of which are volunteers. If they accomplish any objective good, it is all to their merit, just for being involved.

There really hasn't been that much of a focus in the US, on anything but Juvenile Autism. Studies have been presented here by others that provide evidence for that.

As another poster just mentioned though, that identified focus is growing up and moving into the adult population; perceived needs are what change charitable organizations missions and goals, however those needs can't be met until they are measured and identified.

Those needs are coming better into focus, the research that Autism Speaks is now engaging in is objective evidence of it. They are now moving into an area of focus that hasn't been pursued in the past.

The world is becoming a more self-centered place in general, particularly in the US; there is even scientific research that evidences it. No one has a firm handle on why, or what, if anything can be done about that.

That's an issue that affects everyone everywhere in every organization. For those that volunteer in organizations like ASAN and Autism Speaks, whatever they accomplish that helps anyone is a credit to society, I think.

I have been watching Autism Speaks for a while longer. They did push the 1 in 110 were hopeless cases. They also denied there were autistic adults.

They have edited their message in light of the poop slinging they got.

More recently, while you were here, threads about Has Autism Speaks changed anything but their press releases?

That came about in the recent time when they did bring in John Elder Robison, then Alex, and Holman.

I have been pointing out for years that they had no idea what they were doing, were going in the wrong direction, and without any baseline of what adult autistics become, a wonderful people, they were running expermental treatments on children.

According to recent press releases, through their great Science, they have discovered adults!

ASAN is just out for The Disability Rights money. Someone has to take the Government Funding, and that is what they focus on.

Autism Speaks has been in denial about adults, until their doners children started growing up, and had to come to Wrong Planet to get some direction in where autistics wind up.

Now they suddenly see a new field for Marketing, where older people know their history. They did not help the children, they are not welcome.

The Markram's article has much better stuff to steal.

There have been a lot of lets make a buck off of autism organizations, Most of them failed to deliver anything, and faded away. Autism Speaks spent all the money, now donations are drying up, because they did not produce anything.

Like the Markrams said, the old defective and disordered model is falling away. Autism Speaks invested in the Mental ret*d and Defective, and even in that they were not a player, like Baron Cohen.

They are a discredited play science charity, that now wants a do over.

The Markrams are broadly supported by the autistic community, have a Social rather than a fake medical, or political view, Their science is sound, and they offer the best hope for effective treatments. ABA with or without Adversives would shock them, so would drugs for control. Their view is not only can autistic children grow up better, even mistreated adults can recover.

They point out that thse who study the symptoms of a disability, will find nothing else, even if they can find no evidence. They will continue seeking defects, and exclude all other answers.

"Autistics are just wrong, and need to be cured or extirminated." Autism Speaks.

Now that they have failed at Eugenics, they want our help?

A new press release by the same old rat. For $50 million a year, they will keep writing Press Releases.

Truth is no one but us could define autism. Only Psychology tries, but they were wrong about everything before. The Markrams did call the DSM their bible, so I am not the only one who sees them as a religion, The Church of the Perfect Human.

MIT did try to copy the autistic presence at the Patent Office, and failed totally. It can not be taught. It can be developed by those who have it, it being varied for us.

The Markrams see autism as an over evolution of the brain, which sometimes naturally produces savants, and could produce a lot more if the children were raised as what they are, not tried to be made into something vaugely defined, normal.

Autism Speaks sells fear, where parents should embrace the oppertunity. Victorian England raised some children in the attic till they were seven, and they turned out well. We may be slower to develop, but when we do it is worth it. These are the same years that Autism Speaks and Psychology want to use constant conditioning. Tell the child everything they do is wrong, and make them obey the leash.

Autism Speaks, et al, does not even know what we are speaking about.

To them, Autism is the same as Terrorism, it gives the right to take their lives without trial, lock them up, and torture them forever.

Autism Speaks is destroying a generation we depend on for the technology of 2020. That has been the main path of autistic adults for many generations.

The Markrams see this, and seek to develop the gift.

The Markram's seek the same basic goal as autism speaks, to modify the symptoms of what can be a devastating neurological disorder for some, through biomedical/environmental research, potentially allowing autistic individuals the best opportunity to fulfill their potential in life.

Whether or not you meant it or not, the record here shows that you have been supporting what autism speaks has been doing for years. You were the first one here, that I can see that wasn't afraid to speak your mind, on the subject.

You reversed many of your viewpoints here after Tambourineman did the interview, have no idea why, that's your business, but at least here, it's part of the record that can't be erased.

Autism Speaks has focused on the 1 in 110, there is no doubt about that; you are the only one in this thread referring to them at this point as hopeless, mental ret*d, or defective.

Autism Speaks sticks to the available facts, and have never suggested that all of those children will live in an institution, and has never referred to those children as hopeless, mental ret*d, or defective.

Their goal is to provide hope for those children and families of those children, in reducing their pain/struggles/difficulties/isolation associated with autism. They attacked the problems associated with autism, not the child.

Not all have perceived it as it was intended. That's understandable.

Nor, have they or any other organization ever suggested that there were no adult autistics. They provided information on all 5 spectrum disorders on their website, since the inception of the organization.

They didn't focus their research on autistic adults, have focused on juvenile autism as have most other organizations however they never suggested that autistic adults don't exist.



Autism Speaks is at the forefront now, suggesting that environment factors may have an equal impact on autism, not unlike the Markram's research, through the recent research autism speaks supported, on twin studies and autism.

The Markrams suggest that environmental toxins during pregnancy and after pregnancy triggers autism. Their solution is modifiying the extreme world environment, continued genetic research, research into environmental toxins/factors associated and appropriate treatment, including medication.

The Markram's description of autism is no less one of a potentially devastating disorder, than autism speaks description, from the actual abstract of their theory, per link and quote below.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2518049/



Their theory supports the medical and the social model of disability, in that they believe that the disorder can be modified to become a "beneficial one" through bio-medical research and that the overstimulation from the environment should be modified as well, to allow the autistic individual to reach their fullest potential.

The Markram's theory, currently, is based on VPA studies done on rats, not unlike research autism speaks has supported with other environmental impacts and rats.

Mouse models make sense; mice share many of the same genetic markers associated with autism as humans, and they do show associated autistic like traits, under certain conditions, including exposure to VPA, Pthalates, and other environmental toxins.

The intense world theory does a much better job of describing the pain that an autistic can feel in life, than any theory I have seen to date. I think it deserves further research and attention.

Autism Speaks provided funding for a neuroscience conference in which the Intense World Theory was presented by Markram.

The national alliance of autism research (NAAR) that autism speaks merged with has supported Markram's research in the past, in Israel, there is the potential that autism speaks may be involved in future funding for Markram's research, if the organization they currently work for is awarded a grant for such research, in the future by autism speaks.




Since I have been here the thing of significance that has been suggested in these threads to autism speaks that they are currently accomplishing is for research to be done on the real prevalence of autistic adults, superceding the current governmental effort.

I've already stated that several times and provided evidence that they are now funding that research.

I have no idea if those suggestions made a difference, it doesn't even matter, all that matters is that they are doing what needs to be done.

That is the significant thing I can see that has changed since Autism Speaks has been discussed here on this website, since the inception of the organziation.

The partnership with World Planet, in my opinion is probably a more signficant action, than public relations responses:

Basically, taking a couple of videos off their website, answering questions appropriately when questions are asked, and modifying portrayal of autism in their marketing efforts..

In the past you have respected the research that autism speaks does, openly stated you supported the organization, and have put children, with the more disabling aspects, as you referred to in the past as LFA, in the forefront in your discussions, with parents coming in second, and HFA coming in third.

You have a right to change your mind, but the record of your opinions in the past, at least on this website, do not reflect the statement you just made, quoted below. You have evidenced the efforts of the organization as valuable throughout whole threads, not unlike, what I am doing here, if anything, in a more forceful way than I, since, you started posting here.



http://www.wrongplanet.net/postt123582.html

Last edited by aghogday on 09 Jan 2012, 12:13 am, edited 1 time in total.

To put that in context, it was a reply to ASAN, about five years ago when they were calling for attacking the Awareness Walks, and spilling the blood of grandmothers.

Also at that time I had some hope for research. I do take a wait and see view.

Research did not pan out, ABA, now without Adversives, is the only plan.

The Guidebook for Autistics was penned by the Markrams, and I have followed their work.

ASAN is wrong even compared to Autism Speaks, but using one to block the other is using a lesser evil.

I supported Tangerine_Man, he can write, but disagreed with his politics when he started posting Autism Speaks Propaganda.

There are several people who showed up recently to take over, they all spout the Autism Speaks line, Marketing, not the support of scientific research that I supported. Tamborine_Man has stopped, I thought the Markram's Article great, said the same of his Fortune Article.

We know Autism Speaks well, as the Markrams said, we have long and highly detailed memories. We also know Marketing, Propaganda, when we see it.

As I said, Autism Speaks does not even know what we are speaking of, what our opinions are, what "I Have a Dream," means. They are just out to Spam Wrong Planet, use Marketing to alter public opinion, and that does not work with those who have a Differance of Thought and perception, for they see it as Marketing Lies.

The Markrams again, one of our defenses is being more perceptive, and judging on known facts rather than political speech.

Five years ago was another world. I welcomed John Robison joining Autism Speaks, I thought Alex would become a serious film maker, and working a subject he knows well, I did not care where the money came from, because I think Alex will do as he pleases.

I was calling for a study of adult outcomes as a needed baseline before using life altering treatments on children. Producing better adults is the only purpose.

I was polite, supported them when no other would, trying to point out the potential good that could come of it.

I defended the Legal Claims against them, citing Trademark Law, and what is required, and investigated the claims, and found they were without merit.

Where there was potential good, or no harm done or intended, I defended them.

That was five years ago, and intil recently. I was leaving an open door for civil and reasonable contact.

It does not mean I thought they were right, I politely disagreed with many things. Marketing videos that might play well with potential doners, did not here.

I saw Cure and Extirminate as things that would forever alienate them from the autistic community. They have.

From what I have heard, John Robison was doing the same from the inside.

Five years later ASAN is back, the political wing of Autism Speaks, it took a lot of clout to get Ari appointed, since he is not qualified for anything.

Autism Speaks Spambots appear, calling for us all to go to their web site, and speaking in glowing terms of our ASAN Leaders. Tamborine_Man claimed they were his friends, and they were just trying to help us.

So it took five years to get a response, and it comes from Marketing?

Autism Speaks has failed in its mission, Nothing has been developed and shared with the autistic community. An autistic child today is worse off than twenty years ago.

No one has ever studied the views of autistic adults, so they have no idea what those children will grow up like, yet think they should make expermental changes. In Science and Medicine, they rank with Chelation, Vaccines, and Faith Healing.

Since they consider themselves perfect, any differance of thought and perception is seen as a defect, to be cured. They may have hired a few, but they are not ready to deal with us as equal humans, and accept that some of our differance has come in useful. In places we exceed the norm, and in a technological civilzation, it only takes one to bring the future for all.

The Markrams understand this, and suggest economic compensation to parents of slower developing autistics, low pressure but sense rich nurturing, and aiding the child in gaining control of their mind. This is the opposite of ABA, and Conditioning the child to be Normal. That is not accepting us for what we are.

Selling parents fear to deny the Human Rights of a child may be legal, but I have also written about the Curse of Cursive, forcing me to do something I could not. I was punished for being me, and other adults report the same. Drugs and ABA are just the latest punishment.

Since the main supporters of Autism Speaks are Drug Companies, Psychology, they will never change.

Five years and a half billion dollars later they are here because they failed.

I have been warning them of their reputation in the community for five years, yet here they are trying to sell something we do not want, are sure is wrong, and using neurotypical networking to sell it.

We have been studing them for years, now they want to study us? All it would have taken is an open mind. The lack of perception in our range of thought is obvious.

They are like a small child lying about how the cookie jar wound up broken on the floor. What if I get my little brother to say the same thing?

Well, that about sums it all up. Nice one.

Now, speaking of Tambourine man, his Interview: Henry and Kamila Markram about The Intense World Theory for Autism hits the mark! These are some people doing real research and trying to find real answers. Intense World Theory totally blows Autistism Speaks, Simon Baron-Cohen, and others totally out of the water, because it is based on FACT, not NT perceptions of things.

So now I'm done wasting my words on Autism Speaks, because they don't really matter…

Ciao

Last edited by ictus75 on 15 Jan 2012, 9:55 am, edited 1 time in total.

Not that it is of any real consequence but the records here are correct, it wasn't about five years ago, it was a response made April 11, 2010, per the link I provided of your quote. There are other records here where you directly stated you supported the organization as recently as August of 2011.

I haven't reported many facts here now, that are significantly different from the facts you have reported in the past. If you are suggesting I am spreading propaganda, I suggest you provide counter evidence to refute any facts or resources I have presented.

While I don't support the Autism Speaks organization directly, I do support the beneficial efforts the organization and it's volunteers provide for autistic individuals.

Their latest research iniatives, do have the potential to make autistic individuals lives better through better methods of identification, awareness, understanding of the prevalence of autism, and avenues for support for adult autistics in their communities.

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http://www.wrongplanet.net/postx168459-225-0.html

The reason I point it out is what you said 5 years ago, is not something I would consider reasonable, as a recent change in opinion, representative of it, nor would I suggest it is.

Your support for autism speaks research has been a consistent opinion for approximately 4 years, as the record shows. I understand you haven't agreed with merits of everything the organization has done, nor have I. That is also in the record.

I agree that the modern environment is too extreme for some autistics, that has been one of my opinions as to why life is so much harder for some autistic inviduals today than it was in the past, when there wasn't as much stimulus in life.

However, in their interview the Markram's make it clear they are pursuing epigenetic alterations to change what they describe in their theory as a devastating neurological disorder into a "beneficial one". Per the interview and the link to their actual research theory that I provided in the last post.

The potential of epigenetic alterations, means the removal or manipulation of toxic environmental agents in the prenatal or postnatal development to alter the symptoms of the disorder.

They intend through further research to identify which set of genes are predisposing to autism during pregnancy to lower the threshold of epigenetic insult during pregnancy, which is identification of autism on a prenatal basis through genetics for intervention during pregnancy through nutrition.

I personally don't have a problem with that, but prenatal identification of autism has been the biggest fear that many people in the autistic community have expressed about autism research ever since genetic research began. It's good the Markram's can word it in a way, where it doesn't appear to offend most people.

Isolating and eliminating environmental agents/toxins as what they refer to as potentially insulting to the human genome is one thing, but manipulating those environmental agents to guide the evolution of the brain, sounds like an experiment on a child that I can't see happening any time soon, at least not in the US.

They are suggesting autism can be treated by nutrients and drugs; that could be true if new effective drugs are developed, or specific nutritional deficiencies can be identified, but so far, no existing drugs or specific nutritional supplements have been shown to be effective in treating autism.

I believe in the value of scientific research. I don't question the value of the research they propose, except for the manipulation of the evolution of the brain through agents that insult the human genome; that sounds a bit far fetched to me, at least from what they state in the interview.

To date, some have dismissed drug therapy, nutritional therapy, genetic research, and prenatal testing, as part of the cure ideology; it does not represent the social model of disability, and it's been a topic of complaint every time the word autism speaks is mentioned.

Modifying the environment does represent the social model of disability, but entire schools will have to be environmentally modified to fully accommodate those that have problems with overstimulation. Any approximation of it will likely be helpful to some.

Quoted from the interview: