"Autism Speaks" Response to Autistic Input

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



Notice they've changed their mission statement to include the statement about bringing the autism community together to urge the government and private sector to listen to our concerns and take action to address this urgent global health crisis.

Part of the global health crisis is you need your squeeze machine, I don't think that insurance companies cover that, but they are now required to cover many of the treatments associated with autism because of new government regulations. The issue here is with the continued push from organizations like Autism Speaks on the government to ensure that insurance companies cover more of the treatments for Autism, and who knows one day that might include a squeeze machine for you.

However, their mission does not include providing the same benefits for autistic people that that other people that don't face the hardships of autism need. There are plenty of people that would love to go to college but can't afford it because their families can't afford to send them. However the government provides financial aid for people with and without disabilities, as a evidenced by financial need, or if and individual's condition of autism is considered by the government permanently disabling the government provides financial assistance for subsistence

Autism Speaks has a clearly defined mission, providing financial assistance to people with autism to go to college, is not included in the mission stated above; this is part of the mission of other organizations like Autism Societies and Autism Foundations.

These organizations are the ones to pursue if you need financial assistance for school, as well as government sources, and all other conventional sources.

http://www.collegescholarships.org/health/autistic-students.htm

No one organization can provide all the benefits for any health condition. It takes a combined effort of the government, societies and foundations, a variety of different advocacy groups, insurance companies, and many other efforts within the private sector that work together to make life easier for people with health conditions, disorders, and disabilities.

However, by their mission statement Autism speaks invites the whole autism community to join in the effort to influence the government and private sector to listen to the concerns related to the hardships and struggles of those that experience it that have autism, and take action. You don't have to be part of, but they are inviting you to be part of it as a member of the autism community.

While the people that support Autism Speaks Mission aren't funding your college education or squeeze machine, that funding that they provide Autism Speaks, allows the organization to continue to fight to influence action by the government and the private sector, that may in the future be a source of your needs.

While it's up to you to continue to demonize the organization they are not demonizing you as an invidual they are fighting against the hardships and struggles that are part of many people's lives with Autism; it might not be a constructive effort to demonize the organization, considering that one day, some of your needs may be met, even if it's just a squeeze machine, in part, because of the influence of Autism Speaks, along with all the people that support the organization have in influencing the government and private sector to improve the struggles and the hardships in the lives of those with Autism.

If you look at the website, Autism Speaks, provides valuable information that lead to useful resources associated with school and the workplace. That's a big part of Autism Speak's mission, providing awareness fo the general public about autism, and providing valuable resources and information for families of people that have autism and the family of people that have autism.

People would have no reason to fear you because you have autism unless you do something they see threatening to them. They fear that their children may be born with symptoms of Autism like not being able to communicate; that's understandable I think, there is no normal person that wouldn't fear symptoms of a condition that might disable their child for life.

While this may not be your fear, it's real for other people.

I would like to see more focus on people with autism that don't struggle as some others do for greater awareness. This is an area for improvement where people with Autism can influence the organization for positive improvement. I don't see anything unreasonable in this goal. Demonization of the organization doesn't help any positive goal.

(BTW, ahogday, I do want to answer your questions, I just haven't quite been able to sit down and articulate my thoughts yet.)

Well, a lot of us don't see autism as a "urgent global health crisis" but rather a disability issue and a human rights one. I'm not sure that Autism Speaks sees itself as a disability organization, however. It seems to have more in common with the disease model of organization than many disability organizations. I know from work in cross-disability advocacy work that Autism Speaks rarely joins up with other disability organizations.

I'm all for combining our voices to advocate for better housing, education, and employment opportunities for autistic people and others with disabilities. But I simply don't think that signing on to the Autism Speaks agenda is the best way to accomplish that. They only spent 3% on government advocacy, or at least they did. And not all of their government advocacy is geared towards those issues. So, why should autistic people jump to support an organization that only puts 7% of its efforts towards policy advocacy and service provision? From my perspective it makes a whole lot more sense to instead work through organizations that prioritize these issues. And I don't believe that Autism Speaks is one of them as of right now, possible changes in rhetoric aside. Their priorities are "awareness" campaigns and a certain type of scientific research. That's not what I want to support.

I don't come to this opinion in ignorance. I've sat down for more than an hour with a fairly prominent Autism Speaks leader. I know their view and their lines. I don't agree with a lot of it, and hence I do not support them.

I also am skeptical of the claim that they want to "unite the autism community." Sure, that sounds good superficially, but I worry (like I said before) that in practice this means "let's all support Autism Speaks to the exclusion of all other autism advocacy organizations." And I think that's highly problematic. Even if I did like them, I wouldn't support one organization exerting a monopoly over autism research, discourse, or political advocacy efforts. That's a recipe for disaster.



I hope eventually every autistic person receives needed accommodations (including squeeze machines and the like). Unfortunately it seems like a lot of lobbying on the insurance issue focuses on ABA. Sometimes it includes speech and occupational therapy, which is good, but I feel like a lot of people who advocate on this issue focus only on ABA. Again, this is very narrow-sighted and I'd like to see it change. I'd also like to see broader changes in the healthcare system in general. One problem is that many people (including a lot of autistics) don't have insurance. This may especially be a problem for us because we're disproportionately likely to be unemployed and oftentimes autism (or another co-occuring condition like anxiety) may be classified as a "pre-existing condition" that makes us uninsurable. I know that ASAN was involved in advocating for the Affordable Healthcare Act for these reasons. Did/does Autism Speaks take a position on that? I would honestly be surprised if it did, because the organization MO is to avoid controversial issues. I find that a very shallow kind of advocacy and prefer to support more principled organizations.



They may be "inviting" us with words in a mission statement, but how does this translate into practice? What are they doing to actively make sure that autistic people are participating in shaping the organization's future? Some months ago, they held "town hall" conferences about autism and adults in which autistic adults apparently weren't given much of an opportunity to talk at all. It was all Autism Speaks talking to attendees.

I guess I just don't understand why you put so much faith in a mission statement that they put on a website that was crafted by PR people.



When they put things out there like the "I Am Autism," I can't help but feel that they are demonizing me as an individual, though, and I'm far from the only one to feel this way. When they use scare-mongering statistics and make parents fear that their child will be like me, they're demonizing me.

I also fail to see how these tactics do much to practically improve "the hardships and struggles that are part of many people's lives with autism." How do you think "I Am Autism" helps?

The I Am Autism video was not demonizing people but rather autism as a disorder that creates hardship. The disorder is the disability in this rationale and not the person. Advocates who claim to be autism are speaking from a differing modality in context to autism. The I Am Autism video was about attacking the hardships and overcoming the hardships. Autism is the disability effecting quality of life, outcomes and so on. Autism costs allot of money but it is not the fault of people with autism. In a way the I Am Autism video was using what might be manifest at times of haters and taking the arguments away from them for productive purposes. I can say the interpretation is not universal but depending on the mentality and preconceived notions of the individuals observing the video it was quite strategically written to effect certain mentalities and was not intended for self-advocates as a judgement upon their worth but rather how to effect the psyches of those who do.. Autism is not the entire person but some people feel it to be akin to a religion and have adapted beliefs to it. I personally having autism myself believe conceptually autism simply is the disability aspect and not the entire manifested self.

What could have been different by that 3rd party that developed that video is showing positive outcomes as a result. Like inclusion, quality of life and so on as obsticales that were to be overcome. Strictly negative without the clear positive outcome I believe it would have been interpreted better. Ultimately I did not like the video personally because I'm tired of the guilt trips of my disability costing so much money when their is little I can do about it when I already do the best I can.

This argument is falls under the "appeal to ignorance" logical fallacy.




Our entire civilization is built upon scientific advances that cavemen couldn't imagine.

During the part of their history that most complain about, they did discredit all of the snake oil views.

I was against Psychobabble and drugs, for something genetic, Autism Speaks followed that line of reasoning.

Accomidating people with disabilities is not their goal, never was, they are looking for scientific knowledge.

The Board of Health does not treat food poisoning, they look for the source. The CDC does not run hospitals, they identify and track, and hopefully cure diseases.

Autism was an unstudied condition, with Faith Healers.

Life is better now. We still do not know, but we know a lot was wrong.

Autism is expensive. I once figured out that Autism Speaks spends around a day of the cost of Autism. Every day that much goes to care for people. It is not spent on those who can advocate for themselves.

The actual cost is much higher, as families pay for a lot.

Paying for them to go to a university would be much cheaper, but they are not university material.

No one was doing any research, no one was getting better, so they raised some money and went looking.

I see very good results coming from work sponsored through grants.

Once I did think they should do more, but the science did not support my thinking. Our knowledge of genetics is minor. That is no reason to stop, the research has produced a confusion of information. We know a lot more, and have little idea what it means, but it is better than being ignorant.

Autism is the tip of the iceburg, the Human Genome has rough edges.

It is very possible we are making it worse through undisclosed enviormental factors. The research is going in that direction.

We were sure of an unchanging God's Creation for a while, Now that we have DNA testing, we should dig up some people and sample every ten years of the past. We might find a pattern of change over time.

4+% Neanderthal was a shock to many. Some try to blame the cave crash on Neanderthal DNA, That was not Autism Speaks, but it does change Genetics.

Cause is getting farther away as research proceeds, but keep going.

I am autistic, and would rather have more knowledge than a squeeze machine. I will support the cause and ask for nothing.

While there have been some improvments in treatment, most of the work is ahead.

Genetics could work. Physics ran out, but Genetics is us. with a bit of work, a headline, The Common Cold has been modified and now cures warts, and gives a lifetime immunity.

This is the right path, and no one else is spending real money.

If Autism works as a marketing tool to fund Genetic Research, it meets my approval.

We should all support Autism Speaks, because we are a splinter of a minority, and if they strike gold, autism will get the credit. What they are discovering is important to the whole species.

My understanding is that the "I Am Autism" video was removed from their site, because of criticism of it from the Autistic community several years ago. I saw it, and and clearly understand how it could be terribly upsetting to an Autistic child to see something like that. I'm glad they took action on the criticism.

However once, on the internet, always on the internet; it must still be circulating somewhere because I've seen it on this site. I doubt I would have had the opportunity to see it, if it wasn't presented here.

Per link here Autism Speaks did support the healthcare reform act, and the associated requirement for insurance companies to cover autism.

http://www.woodsmalllawgroup.com/legislativeupdate.html

Autism is kind of like a hurricane, it's not a crisis until the big one hits you, and your family. I had some rough spots in my life, but it wasn't a global health crisis for me, more like a thunderstorm that kept me company, most of my life. The big one hit my child. That was indeed a health crisis for the child, nothing like the thunderstorms, that I experienced in life.

I can try to imagine it from the perspective of a child with the health crisis version and do understand it from a perspective of an adult that failed miserably and had greater success than they could have imagined, never understanding why the thunderstorms wouldn't go away, and not realizing they had symptoms that constituted a psychological diagnosis their entire life.

I would have never wanted my child to see that "I am autism video", but if any of the research that Autism speaks supports leads to a discovery that prevents another child from living what my child endured, it's worth the mistakes that were made along the way, that were corrected.

As far as I understand the new mission statement with the goal to bring the autistic community together came out with the new site design last month. They'll have to prove themselves on this one to gain the respect they are looking for within the autistic community.

I see this direction in the new website, but I'll reserve a final opinion on whether or not they achieve the goal by their efforts in the coming years to gain the respect of those that have disagreed with many of their actions in the past.

They won't get it without significant change, I'm fairly sure with the addition of John Robinson to their organization that they are fully aware of this. We will see in the coming years, if they come close to meeting this new goal.

No-one is noticing the genuine advance underneath all the BS hype.

Everything else is just the same old corporate bs aimed at exploiting us as cash cows...which is all "Autism Speaks" is ever going to do...but now they have just enough respect to realise we are human enough to need flannelling too.

The underlying basis of this is a wish to expand into the potentially remarkably lucrative market particularly in residential services for adults, which, in the US can pay up to a (grossly inflated) half mill a year, per adult, for minimal care (...and...*OH LOOK* they appointed a "Director of Housing and Adult Services"...wonder why particularly "housing").

...and you can make even more money if you take it a little further by combining "independent living facilities" with "in house vocational services" so that the individual is totally dependent of your organisation for not only a roof, but his livelihood...kinda like a work house, or a Magdalene laundry, but with nicer, less intimidating, titles. Of course "Autism Speaks" would NEVER be associated with THAT would they?

http://blog.autismspeaks.org/category/s ... th-autism/

The gift wrapping is irrelevant...all that counts is what is inside, and what is inside will never change. They are just gearing up to hijack our adult lives for their own ends rather than just our childhoods.

PS Did they really have a thinktank on Adults with autism that EXCLUDED Adults with Autism? And nobody objected?

You have presented evidence here that they are helping to promote some of the vocational activities of autistic adults. Quite a stretch from that to suggest that they are gearing up to hijack adult lives for their own ends.

Wow, don't you think that people that are severely impacted with the debilitating effects of autism are going to need housing and vocational assistance in adulthood, when their families are no longer there to assist. What alternative do you suggest?

My understanding was the complaint was that Autism Speaks provided research instead of actual support to Autistic Adults. Alternately, you seem to be expressing a viewpoint here that it would be a bad thing if they did.

They are providing funding for independent research as to what the requirements for adults living with Autism will be for subsistence in the mainstream community of life, but there is absolutely no evidence that they are going to fund or provide actual subsistence services to adults with Autism.

If you have any evidence that they are seeking to get into the actual business of providing subsistence support for Autistic people I would like to see the evidence. That's not part of their mission; other organizations and government sources provide the actual infrastructure for subsistence needs of adults with autism.

An effort to help promote sale of a product produced by Autistic people, is certainly not evidence of any nefarious activity.

The poll here is a suggestion that at least some are seeing a positive change in Autism Speaks. I'm listening to your opinion here about Autism Speaks getting into the actual business of providing subsistence for Autistic adults; it's the first time I've heard it or seen any mention of it anywhere, so I can't help but to request somekind of real evidence that validates your concern.

If they were to get into the business of providing support for Autistic Adult people, I see it as only a positive thing. It's a real requirement, that is going to require the effort of many different organizations to adequately provide the services that will be needed for many autistic people to have the best quality of life possible in their adult life.

The fact is, not all Autistic people can function without a great deal of support both human and financial. The fact too, is that no single organization can or has come close to providing all the support required for all the people on the Autism Spectrum. I'm not sure there are many people that could explain what Rett's Syndrome or Childhood Disintegrative Disorder is, on this forum, without a google search, but it has been part of the Autism Spectrum for as long as Aspergers has been part of it, although that may change in the coming years.

Although, Rett's Syndrome and Childhood Disintegrative Disorder is listed as two of the conditions on the Autism Spectrum, there are no definitions of the disorders that can be found there in the informational section of the ASAN website. If nothing else, Autism Speaks provides a much more comprehensive resource for information about the Autism Spectrum for those looking to understand the Spectrum. But, again one can't expect every organization to provide the same valuable resources to people on the Autism Spectrum.

As mentioned earlier in the post by another individual, charities are not the most lucrative areas for some of the highly qualified individuals that work with Autism Speaks. Many of these people are dedicated to what they are doing to help Autistic people, and they are accomplishing real measurable results. There is objective evidence, although not everyone is pleased with everything they are doing.

There was a mention in another thread in this forum that suggested input from people associated with ASAN would be a welcome addition to the forum, to balance out some of the other opinions. As I remember from another thread, you are part of the ASAN organization, so it would be interesting to see your view points on some of the other topics here. I would paticularly be interested in your opinions on the topic of Autism Supremacy that has been discussed here recently and am sure others would be as well.

It is all really very, very simple.

The only way anybody ever got the things that we, the autistic desperately need, like autonomy, equality, acceptance and real understanding is by standing up and fighting for those things themselves.

(Imagine if women's rights had had to depend on the dominant male paradigm lobbying for them...wasn't really gonna happen, was it?)

That is just because nobody else, apart from ourselves, has anything close to a vested interest in us having those things, in fact, for us to have the autonomy, equality, acceptance and real understanding will render Autism Speaks and associates redundant and cost them an incalculable amount of money, prestige and influence, if not actually, pretty much everything.

I can see every reason why the Autism Industry would not want us to have the things we need, and not one single reason why they would.

But, you can only stall progress, you cannot stop it.

There is an whole generation of new parents, a lot of whom, are beginning to see clean through Autism Speaks and associates. They don't like being used and exploited, and are only too happy to jump ship and join hands with autistic self advocates and fight for what autistic people really need, rather than what the autism industry finds advantageous (which, at this point has become something between a significant conflict of interest and diametrically opposed ).

I agree with some of the criticisms of ASAN. I like Ari, but he is far too young to even be aware that he is far too young...and there is way too much self appointment to expertise and influence...but hey...let's not forget that autism is a disability of communication and interaction, and, as such is crippling us in terms of achieving the kind of unified voice we need to stand up for ourselves...ASAN is doing it's best.

Regardless, there is no rhyme, reason or sense in supporting Autism Speaks in covertly obstructing and delaying the progress we need to make to achieve useful and fulfilling lives.

There is a brave new world out there...time to make it our own and leave the parasite organisations behind...

But don't take my word for it, much less try to drown me in patronising verbiage (May wear people down but it never really swings 'em, does it?) just sit back for the next ten years or so and watch it happen....and the jigsaw logo of Autism Speaks join the Gollywog in the annals of tasteless political black comedy.

I'm not interested in pursuading anyone to actually support either organization. My main interest is that autism speaks website has become an excellent resouce of information for autistic adults, and don't want people to miss out on that informational opportunity, because of preconcieved notions fueled by concern that is emotionally motivated and not warranted by real evidence.

The research they are helping to fund for the needs of autistic adults, is a common purpose shared by government and many other organizations as well. It needs to be studied; the problems of severely impacted adults with autism, has to be well planned for and accommodated.

As long as Autism is a severely disabling condition for some, and we are a free country, there will likely be charitable organizations, that attempt to do what they can to help. Unfortunately as I think we all understand some people with Autism are disabled to the point where they don't have the ability to stand up and fight for themselves; they need a great deal of support and it's not going to come without a great deal of external human support and financial support. The financial support will have to come mostly from the government, there is no way any private organization could foot the bill.

ASAN seems to fulfill the need of personal morale support of many higher functioning autistic people, but from what I've seen, they portray themselves as an elite organization, rather than one that wants to accept the darker realities of Autism, that exist whether or not they want to apply any focus to that aspect of it. That's okay, if one is trying to function in the real world, it helps to focus on the positive.

On the other hand Autism Speaks has focused on the darker side, while not promoting the positive image that does exist, but they are marketing for treatment, for those more severely affected. At least on their website, I see a more positive image of Autism.

I still never notice any of their advertisements in real life. I would have never known that either organization existed unless I found out about them here. I think one would have to seek the organization or be interested in autism to know it exists. People rarely watch commercials anymore.

The general public's perception of autism is colored mostly by celebrities with autistic children, mainstream government information, TV shows, movies, and those more severe cases of autism that affect the people they know.

People with mild cases of Aspergers are considered odd; there have always been people that are socially challenged on TV, but they've been portrayed as those with a dilemna more than a disability. That's pretty much the way people see us from my own personal experience. There aren't many people out there that can identify someone that has a diagnosable mild case of Aspergers other than they are odd.

There is not much Autism Speaks or anyone else can do to color that information differently for the general public, if people don't have a desire to learn additional details about the disorders. It's the reality of our society, people get their perception of what they haven't experienced, from popular culture as represented in commercialized media sources.

I don't see where Autism Speaks or ASAN is going to have any significant impact on how the general public perceives Autism.

The only real significant protection for people with a diagnosis of Autism that are successful in functioning in mainstream life, is the ADA, if we get assessed for disability under the act, it can help provide accommodation in the workplace. It is government provided protection.

It is not something we can get from a private organization like ASAN or Autism Speaks. It's pretty much all we have and all of what other people with disabilities have doing their best to function in mainstream life.

I'm not sure what else we can expect from society, unless we need human support and financial assistance to survive as some people do that live with Autism. Social programs for people that need help are struggling as is.

For those of us that have the ability to fight for our own rights and aren't looking for external sources of support, neither Autism Speaks or ASAN makes much of any real impact in our lives, that I have noticed in my lifetime with Autism.

Now you are being more than mildly daft.

I could barely find any "adult references" at all. Certainly nothing very significant.

There has been far more actual and useful information, for example here:
http://www.autism.org.uk/
http://www.aane.org/
...and has been for years, and most of it far more neutral and informative and less agenda driven.

Besides, propaganda aimed at inducing and encouraging individually detrimental interiorised prejudice and compliance with the agenda of an organisation that strives to exploit you is an "excellent source" of something all right, but we don't call that "infomation" down here in the farm.

In a PR context, information and manipulation are polar opposites...the first gives something for you to use, the second seeks to impose a use upon you. It is impossible to do both together, and rather silly to suggest they could ever serve the same purpose.

(It never ceases to amaze me how many trained, experienced - and usually grossly over paid - PR people STILL mix up the concepts "Autism" and "stupid"...give a great advantage of surprise every time we do not swallow patent nonsense whole.)

As a matter of fact, it is common practice deliberately assume control of every kind of public opinion, that is what the highly paid art and science of Public Relations, and it's kissing cousins "politics" and "propaganda" are all about. All three are lucrative, high pressure, highly competitive industries.

"Autism Speaks" currently have overall control of the public and political image of Autism, even in the minds of people who have never hear of them per se. They use this to channel, not only public opinion, but social programs away from our best interests and towards their own, and affiliated agenda. This has recently consisted, in part, of creating a false dichotomy of autistics as people either in need of full time care and control or in need of throwing in the deep end unsupported, where most of us must, inevitably drown.

As a result we do not get the springboard supports we need to integrate into areas where we can achieve total independence, and are being left, at this point, incapable of effective self support, and, due to the current trend to demonise disability and restrict available resources, left hung out to dry to slide into destitution, on one hand, and get maneouvered into high dependency situations where society gets hit with grossly overinflated bills to neglect not only our real needs but often our basic human rights on the other.

In the USA the bill for keeping an adult autistic in residential care is usually at least $300,000 (and often costs far more). $300,000 pa is far more than it costs to support that individual, and is mostly pure profit for someone. It is also enough money to keep 10 or more autistics comfortably in the community or provide 20 or 30 autistics with the, short to mid term springboard of support and accommodation they need to full, sustainable self support.

There certainly are autistics who need a high level of support but they do not need, or benefit in any way from being the focal point of profiteering on that scale, and, beyond that, the services thus provided are in desperate need of monitoring by people who actually care more about their human rights than about the huge profit margins of their service providers.

The truth is, of course, that very few autistics need full time care and control, and most autism is exacerbated by it's imposition even when it is at a level of "best practice that hardly exists in the real world. Equally, very few autistics can become self supporting in today's world without some degree of appropriate, effective support and accommodation...some are lucky enough to get it from family...but apart from that there is nothing appropriate and effective on offer...and when there is nothing appropriate and effective, being exploited by something ruthless and inappropriate like "Autism Speaks" is never "the next best thing".

Inappropriate adult services are far more lucrative to the providers and costly to the state than anything we really need, and as such, are the latest area of rapid expansion, for which Autism Speaks is effectively the Public Relations voice of an informal cartel of interested parties.

That is the only real bottom line, everything else is so much BS, played out at the expense of real people's lives.

Where I live the system receives no where near $300,000. In fact the common day program receives around $15 and hour. My 7 days a week services for community integration for 5hrs a day providing company and going to the grocery store for instance cost a fraction of that. I would also qualify for group homes.

Individuals with autism have the right to have their disability represented in ways to derive research dollars to find solutions. Not everyone views autism as a social identity. The methods expressed above are about costations and related exploitation. Seeking to treat individual symptoms would reduce costs and not increase costs. While I haven no affiliation with Autism Speaks nor focus on any organization outside of employment goals the logic just does not add up. Autism Speaks is a platform with major concern to research but could be utilized for other goals should it be approached right.

Not everyone with autism will agree on these matters. However the common pride agenda is to remove an importance to the disability aspects to prevent research. Individuals that do so will not compromise on the image of autism for the right to treatment. Hence it is purely political instead of about human rights and it's all about sides and opinion each way. All that matters is people have the right to treatment and autism being viewed as that horrible thing creating obstacles for an individual is a liberty so are to derive solutions in the scope of treatment rights.

Day programs never receive anywhere near the stratospheric 6 figure sums inevitably paid out for residential services (commonly it is between an eighth and a tenth of that amount...say about $30k? Give or take...or around $15 an hour.), which is *why* the heavy focus on covert disenablement and fostering dependency on residential services is such a popular and valuable commodity....attracting so many, hard to definitively identify, sponsors.

...simply cos there ain't nothing like the same margin in even letting us get independent enough for daycare...



Naturally, you will never hear me say otherwise...matter of fact I find my own autism cruelly crippling (in case anyone is interested, which they probably aren't) but, equally, every human being has a right to reject exploitative organisations misrepresenting their disability and raking in cash with the effect of obstructing solutions and exacerbating their difficulties.



Sure...hostage taking and blackmail immediately spring to mind, but you would still never be able to trust them an inch, and life is too short.

Better idea, deal them out of the game and find a way to progress *without them* rather than *in spite of them*. Much more efficient



It is truly amazing how many people with "no affiliation to Autism Speaks" joined up in October/November last year...must be some kind of cultural cluster?

Look. I do not buy into the mellow drama Autism Speaks is the devil. I keep an open mind either way. For years I've observed self-advocates only online say horrible things which many of them ended up not being true. At what point are people just jealous of their ability to raise money and do what they say. I may not agree with all research but it is not my right to take those rights away from other individuals. It seems to have to do with political ideologies not liking how they advocate for insurance coverage.

The few out of the whole that continually say things about them that most of the time end up not being true have not sold me enough on it to hate them. Seems more like a peer pressure thing like in high school. I like being the observer of it trying to figure out the why's. Politics can be nasty and the same conspiracies of Autism Speaks not being in my best interest may be the case of the propaganda against them and those like them to lesson support for a disability I and other experience to make it out into my being a genius in all regards and that I do not need help.

It's a trust issue and Autism Speaks has famous people, government and so on that work with it. Online propagandist have very little backing and when they do they are using abortion guilt trips to get their way like ASAN does. Otherwise it's being explained as a conspiracy against them by the N.T's for being ignored. All in all I am not member of either ASAN or Autism Speaks because to me they are distractions to my personal goals of achievement due to the politics and resulting cycle of erroneous dispute.

Waste of time and will power.

Of course Autism Speaks isn't the devil, it's just an ordinary, everyday, ruthless corporate entity with 501(c) status chasing the main chance at the expense of the vulnerable. It's not even personal, but then neither is MRSA...but that doesn't make it good for you.



Me too, but that is hardly a persuasive argument for submitting cheerfully and willingly to being exploited and disenabled by Autism speaks and associates.

It is really very simple. Autism Speaks has nothing to gain, and a lot to lose, by meeting autistic needs, so they never will.

There are two counter points.

1. The research and treatment rights view of autism are only about the negative things.

2. Exploitation as funding has proven to goto cause which is research is more about the self-gain of needs being met.

I strongly feel that even if they sought to help organizations that help in the day to day lives of people with autism in newer and more innovative ways they would still be trashed. Fact is to me they can do no right unless they submit to certain peoples views which most do not even endorse. There is as of yet no practical solutions Autism Speaks can provide other then ending all research and handing the money over to people that demand it otherwise they won't shut up? Is that what it comes down to?