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You seem to be focusing on the likelihood of me convincing everyone else to agree with me. I don't think I am ever going to convince enough people not to contribute to the Genome Project to stop it from happening. That doesn't mean I should support or react neutrally to autism speaks (who claim to speak on behalf autistic people, and DO NOT speak for me) when their name comes up in a forum discussion. For me "people are never going to agree with you...so you should just shutup" doesn't work as an argument. In any area where there is a discussion about autism speaks, I am going to oppose them. There are charities for Autism that do not do unethical things, and if I can convince one person not to donate $5 to autism speaks, it will have been worth the few minutes it took to give the case.

I think it stands to reason that whatever the political situation in your country, more severely affected people are more likely to get diagnosed, and unemployment may be one reason why they choose to do so. Most people would rather be born than not, even if it means that they do live in poverty. Aborting autistic people won't solve the unemployment problem. There will always be more people than jobs and there will never be a perfect match between the skills people have and the skills employers want. If there were no autistic people tomorrow, all it would mean is that getting management positions and positions in retail would be more competitive than it currently is, and getting technical jobs in IT would be less competitive than it is currently. Assuming the same number of people are born, there will still be the same number of unemployed people.

Somebody wanted "one thing" that "Autism Speaks" do to harm people with Autism?

No problem.

Their invalid and misleading endorsement of early, intensive ABA as the "Gold Standard" treatment for Autism.

There is no independent peer reviewed research into long term outcomes in adulthood from ABA, there is also no independent monitoring. More ominously, there are not even any clear, validated anecdotal accounts of the influence of ABA in adult life, for, or against.

However, common sense and studies of similar forms of conditioning indicate a certainty that ABA reduces purely outward manifestations of autism in childhood, at the expense of chronic interiorisation and the the development of significant, distressing and disabling personality disorders in adult life.

ABA is, however, the most expensive and profitable form of therapy generally available.

Autism Speaks exist as an umberella organisation on a mission to monopolise and exploit Autism Awareness, as a result, all research into, and presentation of Autism is directed at maximising the benefits of that exploitation not the benefits to Autistics. It's a common pattern in the so called "not for profit" sector.

Incidentally, the stratospheric salaries ensure retention of "not for profit" status, and Autism Speaks have never released anything approaching full disclosure of either their corporate sponsors, of where their grants go. With a turnover of at least something approaching $60 million pa. that is curious, to say the least.

I personally don't think you should shut up. It's a good thing that people complained about the video that some found offensive. Autism Speaks responded by removing it form their website, so it is evident they listen to valid concerns. I don't personally financially support Autism Speaks, but they are indeed doing positive things for the majority of people with Autism. That's not to say that I agree with all the things they do. They have done nothing illegal and upset some because they protect their own legal rights as an organization, to fulfill their mission unimpeded.

If it was my choice I don't think I would abort a child, but it's not my choice and I can't possibly fully understand that issue unless I could see it from a woman's point of view.

And regarding problems that people have getting employment, a diagnosis, or finanical assistance in our country. Without insurance people without jobs simply cannot afford a diagnoses unless someone is willing to pay for it. And while it may be better to be alive in poverty than never born; if there is a way to come out of poverty that is also a valuable goal that has merit.

One of the good things that Autism Speaks is doing in part of the research that they are funding this year, is ways to provide a diagnosis for people that cannot afford one. All of this information is on their website for anyone who cares to review it.

I'm not trying to change your mind about the way you feel about Autism Speaks; just trying to provide additional objective perspective for anyone else that might be curious about the organization; some people state openly that the organization hates people with Autism and it is a Naz* organization; that's simply ridiculous and could be viewed as slanderous by Autism Speaks. And, from the track record of the organization they don't accept behavior that intercepts their legal rights in accomplishing the mission that they believe in.

The organization was founded based on the love of caring relatives of parents of Autistic children that had the means to attempt to make life better for people with Autism. If I had that means to prevent another child from suffering the way my child did, I might have done the same thing, so that colors my opinion on the subject more than anything else. The love that a parent has for a child has no limits for some.

Autism Speaks views Autism as a serious condition that requires intervention; they have as much right to that view, as those of us that believe we are okay as we are. I take no offense to any of your views. I just have a different perspective on the topic.

Yup, they deleted the post.

Not surprising. Autism Speaks has been silencing autistic self-advocates for quite a while.

There is nothing invalid or misleading about Autism Speaks endorsement of ABA; research backs up it's effectiveness, it is widely accepted as a safe and effective means of treating Autism, and it is endorsed by many Federal Agencies including the Surgeon General and the New York State Department of Health. That method of treatment has been supported as a valuable treatment method since the 1960's. Autism Speaks can't reliably present facts based on personal opinion, rather than scientific evidence.

If Research proves that it is harmful, it is no longer likely to be endorsed as a safe and effective means of treating Autism.

Evidence from the results of research that Autism Speaks helps fund does not support the opinion that all research and presentation of Autism is directed at the exploitation rather than benefits to Autistics.

One of the research programs they fund just recently developed a checklist for screening a child to age 1, to better have the opportunity for effective interventions for children at that younger age.

How is that exploiting Autistic people? Autism Speaks lists a chronological record of the research they fund on their website, and it is evident that it is not all designed to exploit those that have Autism.

Autism Speaks has fulfilled all legal obligations for financial disclosure. And, their financial disclosures meet the approval of what is required by the BBB for charitable organizations. The one element they failed to meet was based on failing to provide details on an affinity credit card program with bank of America. The details of the program are now on their website.

ahogday, your request was for "one thing Autism Speaks are doing to harm Autistic people". I gave you one.

"Autism Speaks" failure to fund appropriate research into the long term effects of ABA in adulthood will not, in any way, prevent the children on whom it is imposed from being harmed by it. There is absolutely no independent, formal peer reviewed research to qualify calling it a "gold standard" in anything. Just as there has not been for any of the former, discredited "gold standard" treatments Autism Speaks chose to promote in the past.

As a matter of fact, "Autism Speaks" website carries a very partial synopsis of the research it funds and had never once released anything approaching a full list of sponsors and grant recipients. Besides, I suspect it takes considerably more than acting just within the law to evidence any kind of genuine concern or altruism, don't you?

OOOPS! There goes something else that "Autism Speaks" does to harm Autistic people...or are we to be expected to wait until "Autism Speaks" funds research that proves Autistic Self Advocates are harmed by being gagged and voiceless before we notice THAT one too?

Longitudinal Studies have been done and have shown long term positive effects with ABA for children with Autism. ABA has been used for 50 years, and proven through research to be effective for many conditions.

"Gold Standard" does not mean that it is the only treatment that works for children with Autism, and Autism Speaks acknowledges and supports research to determine why it does not work for all children with Autism. Autism Speaks endorses a number of other treatments on it's website right along with ABA that are also widely used and seen as safe and effective for people with Autism.

Many other organizations including CARD "Center for Autism and Related Disorders," an organization that is well known and seen as credible, have been calling ABA the "gold standard" for years, but like Autism Speaks, CARD neither calls it a cure for Autism or one that works for all people with Autism.

Just the fact that ABA has been a standard treatment for 50 years, and has been proven by research to be effective, meets the commonly understood general definition of "gold standard". It is probably part of the reason why so many different sources refer to ABA as a "gold standard"

If the scientific community sees a need for a study from childhood to adulthood with ABA for people with Autism; one will likely be conducted. Autism Speaks will likely fund the research if they see it as a priority.

I understand you see a study like that as a priority, but it is not evident that the scientific community sees it as one; I don't doubt that one will eventually be conducted; Autism Speaks isn't preventing a long term study from happening and there is no "real evidence" that they are causing anyone harm by not promoting a study like that.

One cannot prevent something that is not proven to exist. Longitudinal studies already show that skills learned from ABA in Autistic Children are retained up until age 11. No evidence of mental disturbances were noted in the research.

Mental conditions are often seen as co-morbid conditions in adults with Autism, so it would hard to link them directly to ABA training received in childhood. If a child was bullied and received ABA, or an adult that received ABA training had difficulty finding employment or gaining successful relationships, how would one objectively determine which social element resulted in a mental problem? Pychiatrists and individuals have a difficult time determining that without the element of ABA training in childhood.

I think it is likely the research hasn't been seen as a priority from childhood into adulthood because longitudinal retention in skills has already been shown to be retained from preschool through age 11.

If and when one is done a study will probably test for the retention of the skills into adulthood. If that is the only relevant hypothesis seen that can be effectively tested, I can see why it is not currently a concern seen as a priority in the scientific community

There are hundreds of other sources of revenue for research, so there is nothing stopping researchers from doing a study like that if and when they see it as a priority, whether or not Autism Speaks decides it is one of the priorities they fund.

As research is published the sources of funding is also included with the research. So it's not hard to determine if Autism Speaks funds research as it is published and who the other organizations and individuals are that sponsor the research.

If you are interested in that kind of detail on the research they fund, without waiting until it comes out, you might contact them to see if they will provide it to you, but there is no real compelling reason I can see for publishing that level of detail on a website. What they do provide is fairly detailed if one pursues the links they provide on the website.

I can say for sure that at least the co-founder of Autism Speaks that has a grandson with Autism has genuine concern for people with Autism; however I am also sure that he sees Autism as a condition that warrants the mission of Autism Speaks, as do the others that run the organization.

Being genuinely concerned does not mean that a person is immune to bungling their mission so horribly that they accomplish the opposite of what they intended--in Autism Speaks's case, that means spreading lots of fear and pity in the name of awareness, siphoning money away from valuable research and practical solutions for the world's autistics, and drowning out the voices of the autistic people who want to speak for themselves.

You can be very well-intentioned and still do horrible things. Think of the eugenics movement--they wanted utopia; they got sterilization, institutions, and lobotomies.

I have seen the awareness issue; it has been addressed by Autism Speaks, and I agree that greater awareness of those that function well with Autism is good, and hope to see them improve in that area.

What is valuable research and what is needed by Autistics is seen differently by some people but Autism Speaks mission is clearly stated; I see no evidence that the research they support does not reflect their mission.

Can you provide any examples of research that they support that does not reflect their mission statement of finding a cure, treatments, intervention, and prevention of Autism?

I'm not sure what post was deleted but the topic post on facebook that initiated this thread is still there. Just like this site they have moderators, have rules of conduct on the board, and have the authority to delete posts that are not considered in alignment with the rules.

On a routine basis there are opinions that disagree with what Autism Speaks does and they continue to stay on their facebook site, even with some pretty testy exchanges between those that oppose each other.

Regarding issues concerning copyright, they have a legal right to protect the copyright. What specifically have they done to silence people that haven't broken rules or laws in voicing their opinion? Autism speaks can't stop someone from expressing their opinion, unless someone breaks the law or their rules on a message board that they control.

All privately owned discussion boards have a right to delete posts that they feel are not appropriate content.

All one has to do to let their voice be heard is to not break any copyright laws or rules on private websites.

But, if someone were to post what they consider as a statement that is not backed up by facts on their website that they see as slanderous in content or offensive to other posters, why should they be required to leave it on their website? Is that silencing someone or exercising a judgement that can be seen as protecting the mission of the organization that people whom are in agreement with fund.

The biggest voice in disagreement with their mission is to fund another mission that someone agrees with. Or, to join in with the voices of that organization and reap the benefits of the support that is needed.

ASAN seems to serve that purpose and I don't see Autism Speaks silencing the voice of that organization. But, ASAN doesn't violate copyright laws or post items that are likely to be deleted on the facebook site.

ahogsday, show me links to 5 of these "longtitudinal" studies, that are independent of any organisation making a profit out of ABA, formally conducted and peer reviewed.

Empty rhetoric and invalid assertion does not cover such monumental harm I am afraid.

Just as "up to age 11" does not cover long term effects in adulthood, let alone adverse side effects.

We already know that they allow us to speak as long as we agree with them on command and do not challenge them. If Autism Speaks had an iota of genuine concern for Autistics they would be DESPERATE for any crumb of information we can provide them with, not gagging us and only allowing us a voice on condition we ignore our reality and blindly endorse them while they act largely against our best interests and always totally independent of them.

That alone "does not reflect their mission statement of finding a cure, treatments, intervention, and prevention of Autism" without looking any further.

"Because they say so" has no evidential value.

Having a grandchild with Autism is no guarantee of genuine concern at all, especially not when you are creating a business where you can vote yourself a stratospheric salary.

"Autism Speaks" exploits people with a genuine concern for Autistics.

I believe that the psychiatric profession should operate on the basis of "first do no harm", which means therapy like ABA should not be allowed to continue to happen for 50 years without longitudinal studies into ALL its effects (and by that I don't just mean retention of skills). Proving that it works is not the problem here. If all Autism Speaks were doing was funding ineffective therapy, that would be a waste of everyone's time and money, but funding research that may be harmful is another thing entirely, and it is not ethical to do so.

I do not think that an organisation which funds unethical therapy and unethical research should be funded. It is entirely possible for an organisation to fund positive research without funding negative research, and Autism Speaks is in the way of that because they have a position of market dominance which makes it very difficult for other organisations to reach that level of donations.

THAT is one of the major problems I have with them. Rather than taking our input and considering it as valuable, they treat us as if we do not exist, or worse, as if we are a problem to be swept away.

~Kate

I don't understand this.

If I posted a screed about Alex Plank and said things that were at odds with how he envisions Wrong Planet functioning, why wouldn't he or an admin delete that post? It would be me that is out of bounds if I expected him to endure my opinion. Autism Speaks is well within their rights to maintain their forums in the way they see fit. How to you make the leap from those rights to the idea that we are being swept away?

Autism Speaks may be heavy handed in managing their brand (which I find distasteful), but that's a long way from being the evil organization that some people seem to believe it to be.

Oh, come on. Even my local newspaper endures opinions about what it prints that are not always complimentary. What the OP posted wasn't a "screed"--it was merely critical. If Autism Speaks is so weak that it cannot bear any scrutiny or criticism whatsoever, then why does it deserve the donations of so many? If it has to silence anyone on the spectrum who might point out some things in a reasonably polite manner, doesn't that say something about the organization? It surely does to me. I'd think you had a point if the post were truly a screed full of obscenities and irrational ranting, but give me a break. It's one thing to delete childish rants, quite another to sweep away any dissenting opinions.

~Kate

The opinion pages of a newspaper are by design a place for opposing opinions.



Just because the terminology avoided invective does not imbue it with any more appropriateness to the venue.



If Autism is as weak as you posit, then how is it that it attracts so many donations? You can't argue with success. You may not LIKE it, but what ever it is that they are doing, they are doing it well.



It all depends on the venue. It is quite popular to conflate singular actions by Autism Speaks into a grand plot against the autistic community. Autism Speaks must regularly fend off blatant attacks by people far less polite. But polite words can be an attack just as easily as rude hyperbole. Autism Speaks has the right to manage the perceptions of its organization on every medium that is actually part of that organization. Conflating this image management to a free speech issue is just bollocks. Now if Autism Speaks sent out minions to hack other venues to delete offending posts, then you might have a case. But there are PLENTY of places to discuss Autism Speaks without any censorship at all. This site has multiple threads about Autism Speaks, most of them not very kind.



Dissenting opinions don't belong within that corporation's milieu. It is an erroneous expectation. If you post on their site, they can manage that information according to their needs. That's why that site exists - why they invest time and money to keep it active. It is NOT on open forum. You expect them to operate that site according to YOUR ideas of what is fair. That's is effectively expecting them to adopt your point of view. Reality doesn't bend to one's expectations.

The problem is Autism Speaks is too successful and it aggravates people that don't share their ideology. Well if your ideology is so powerful, why isn't it successful? Oh. I know. Because evil Autism Speaks suppresses you. Again bollocks. There are plenty of people that consider Autism Speaks a less than ideal representative of the Autistic Community. But I have yet to hear a coherent message of sufficient power to unite this rag tag crowd into an organization capable of actually DOING anything about it. So the default position is to b***h about the oppressor.