"Autism Speaks" Response to Autistic Input

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The idea that the past somehow doesn't matter anymore is kind of absurd to me, and I disagree that these issues are "resolved." Sure, they may have taken down the video after an outcry, but I have yet to see a full apology for it, or for any of the other problematic representations which they have produced, including the "Autism Every Day" video. There's a difference between genuine repentance and just covering your tracks for PR purposes.

The seven items you list are, for the most part, quite small and don't require very many resources. Really, how hard is it to change your mission statement to be somewhat more welcoming of autistic people? That isn't meaningful action, it is rhetoric. When I see the organization actually acting on this principal, maybe I'll start to believe that that it is more than empty rhetoric. But the onus is on them to change actual practices, not just adding some nice-sounding words.

I disagree that these seven "actions" have objectively improved autistic people's lives. I only see numbers 1 and 2 as having the potential to do so, and even that is through indirect means. As for #4, they haven't really done much of that--at least not in terms of funding quality of life research or research about supports. They just haven't. Go look at their database of funded research. Listen to what Geraldine Dawson is saying at the video on this website. I think that makes it pretty clear that this kind of research is a very small piece of what they do.

I also disagree that causation research helps autistic people here and now. The fact is, autistic people are here regardless of what caused it. I think actually helping people is more productive than genetic studies or needle-in-a-haystack searches for so-called "environmental" factors.

If that's the best that can be said for how Autism Speaks has helped autistic people, that isn't saying much. This is an organization that is making around $70 million a year--more than all other autism charities combined. And this is the best they can do? Wow, that's kind of sad in my opinion.

The Autism Speaks issue is typically about much more complex big picture issues. In how Autism Speaks chooses to conduct PR even if it is bad still cannot ultimately indirectly evade treatment rights. I am sure certain groups could ultimately do a very poor job of representing treatment rights for another agenda to evade it in politics. So ultimately Autism Speaks as a whole does not conclusively represent as a side treatment rights and persuasions in the grand whole of things but seeks this as an interest in PR.

The politics of advocates will not always match up with the pursuits for research which are human rights. Thinking of the I Am Autism video for instance what they seemed to have done in PR was take every negative thought about the costs of autism and presented a potential solution by means of research. I'd guess socially and politically it was removing in a way the political voice of people that are hard on individuals with disabilities for those costs (I've been witness to it many times ) and not making it their fault but blaming autism and the potential solution was derived in part or in full by research.

Causation research is a component of civil and human rights. The I am insulted politics simply cannot evade those rights. As far as solutions for equality I perceive it only in part reasonably possible to be derived of research. The two modalities of treatment rights and inclusion dignity rights seem to innately conflict. If autism is horrible and it is as of yet still part of a person in manifested symptoms then the PR of "autism is horrible" may interfere with "autism inclusion" with regards to the needed image for inclusion rights on an individual basis.

As far as a solution because Autism Speaks is not the only treatment rights organization is to somehow find a way to separate inclusion vs treatment awareness types. As the two cannot ultimately supersede one in the absolute but they may conflict with each others best interests. When they conflict inherently treatment rights pursuits supersede inclusion dignity rights when they are appropriately separated from one another when possible.

Common sense conflicts.

1. In inclusion of individuals to embark upon a campaign along side of individuals saying he or she is diseased and in need of a cure dignity supersedes when individuals object in certain government funded settings. This unless individuals agree that their personal dignities are more along the lines of inclusion which incorporates treatment research awareness side by side. Individuals have then a choice to participate and the right and liberty of the modalities coinciding expressions.

2. In treatment rights and related research persuasions when it is separated in PR it supersedes individuals rights to dignity in the macro image of autism as treatment rights are about a specific disorder symptoms others seek to have revised and not an entire person whose symptoms and opinions differ from one another.

Seeking to evade the representations of treatment rights for research potentials is an avenue which cannot be won. Although dignity and treatment are rights the two simply need to coincide better but ultimately neither can destroy one another. It's all about circumstances in which expressions take place. Certain special interest and otherwise political interest would enjoy seeing autism not perceived seriously due to costations and some of certain beliefs do not want symptoms of autism cured even when individuals choose.

No you haven't, and to keep saying you have will not change that.

Actually, you said it far better than me...all I can add is that there is no rhyme or reason to the suggestion that we owe some kind of support to any organisation because it deigns to exploit us.

"Absurd" is a good word for the very suggestion.

Where the sun cannot shine there will be no light unless one chooses to bring a source of light to the darkness. It is metaphoric representing your failure to see anything positive because you choose not to. That is your right. Personally I think I've been to the Autism Speaks website three times and never spent to much time there. To me this issue is more about abstract analytics and emotions governing differing contextual concerns.

I simply have yet to see monsters out of people or the big deal other then something to complain about to complain whilst really failing to do really better things in the best interest of others as a whole. More can be done together then when in conflict with one another. Those that can look past disagreements and seek a common goal among one another really have my respect.

Last edited by ci on 12 Aug 2011, 7:10 pm, edited 1 time in total.

People say exploit at times when it is otherwise not. Explain why I should think Autism Speaks exploits me simply because you don't agree with things it progresses. This is where the failure of facts may end up politically terminating your point of views credibility and the likes of your views.

In the case of the video it was produced for a specific event and well received in that event. The majority of those that supported Autism Speaks did not have a problem with it because they could identify with the emotion of it. I didn't see it as positive, but Autism Speaks acknowledged the minority criticism by taking it down. That sounds reasonable enough, considering the majority of their supporters, didn't have issue with it.

The same applies to Autism Every Day; it's not the full reality of Autism, but at the time it was accepted as a fair representation of the reality that some experience with Autism. I don't like either film but it did resonate among those that see the more difficult issues with Autism and experience that reality.

#1 is clearly an advantage for those need the information and resources available on the website. #2 and #3 are considered groundbreaking research achievements; #2 is improving the life of some Autistic people for earlier prescreening of the condition as we speak. #3 has vast potential; the research has changed the perspective of the scientific community on Autism and the influence of environmental factors. Research is the main mission of Autism Speaks; one would expect the most significant impacts of their mission in this area.

I presented evidence of clearly positive actions that the organization has taken that has the potential to positively influence the life of at least some Autistic people. I didn't state that these factors all are currently producing objective impacts of those with Autism. But they have had positive influence on some and they do have the potential to positively impact the lives of Autistic people.

The poll results are evidence of a positive direction that some can see as a result of change on the part of Autism Speaks. At least some of the comments reinforce appreciation of this change. There are always areas for improvement. Zeraeph has expressed the contention the organization has produced no action that had a greater positive impact than negative impact. There is no evidence to support that contention, as I have provided clear evidence to the contrary. All of it is certainly not ground breaking, but clearly none of it is adversarial to the Autistic Community.

As part of our discussion before, if research is not something someone supports in the pursuit of a better life for an autistic person, Autism Speaks is not the organization for that person to support. That's reasonable, but it's no reason to villify the organization.

My challenge to zeraeph was not one to prove that the organization was not worth supporting, but to provide specific negative actions of the organization that the organization is doing now as adversarial to autistic people, since her contention is every action that Autism Speaks takes impacts autistic people in an overall negative manner.

Last edited by aghogday on 12 Aug 2011, 9:05 pm, edited 2 times in total.

I presented 7 positive things that are clearly identifiable as positive things that Autism is doing that there is evidence for. While they all may not be groundbreaking you have no evidence to counter that they are anything but positive actions.

Here they are again, since you state that I haven't presented the evidence, it may refresh your memory:


1. An expansion of general information on their website from recognized reputable third party sources, along with expanded resources for autistics, families, and friends of Autistics; along with the availability of information for the general public.

2. Funding for Research that has led to an early screening test for Autism that is available to parents free online; and can be used by physicians as well.

3. Funding for Research that has led to an understanding in the Scientific Community that environmental factors may play a bigger role than previously assumed in Autism, that may result in further research into the specific environmental factors that may result in the debilitating symptoms of Autism.

4. Funding for Research to better understand factors that influence quality of life for adults with autism, emphasizing effective supports, functional outcomes, medical co-morbidities, and mortality.

5. A change in their mission statement that invites the entire autistic community to come together to fight for the changes needed to make lives better for Autistic people.

6. The addition of a successful highly functioning Autisic person, John Elder Robison to their organization, along with joint efforts with World Planet to showcase the experiences of higher functioning people with Autism in a video medium

7. A more positive image of Autism respresented in the imagery on their website.

Which one of these positive actions do you dispute. There is clear evidence that all of these positive actions have been taken by Autism Speaks.


You, on the hand have not been able to provide any reasonable evidence of any actions that they are doing that negatively impacts the Autistic population as a whole. Saying I didn't do something when I clearly did it, as the actions clearly exist above in #1- 7 above, doesn't change the reality you see in this post. I will provide additional positive actions that the organization has produced if you like.

I still invite you to present any evidence you have to prove your contention that all the organizations activities have overall negative impact on autistic people. The positive actions that I have identified here again in this post disprove that contention all by themselves.

As I stated to the other poster, if you are against research into the causes of Autism, Autism Speaks is not the organization for one to support, because that is their main mission. However there is no current reasonable evidence that supports a villification of the organization, other than a personal agenda. If you can provide reasonable evidence to the contrary, I will stand corrected.

I don't agree. It was offensive to a great many autistic people, and therefore warranted an apology. Whether the majority of their supporters supported it or not is irrelevant; the fact is it was hurtful to some people.



Any film is at best an approximation of "reality," and I don't think that was a fair representation even of those particular children. Are you aware that the families filmed were told not to clean their houses, dress themselves nicely, follow their children's usual therapy schedules for the week prior, etc. before filming in the hopes to make them appear more hopeless? That's not reality.

Furthermore, the major problem with the Autism Every Day video is that a parent--who then held a high position within the organization--talks about how some days she thinks of killing her daughter. She is presented sympathetically. That is a major problem!

Many autistic people--and not just those who are deemed "low-functioning," BTW--do have some behavior problems due to autistic impairments. I did, and still do, though I am not generally deemed low-functioning. But that doesn't mean that those moments of difficulty represent the entirety of our lives! I have to say that I would be extremely upset if my parents went out of their way to make my life more difficult than usual, filmed me while I was having a meltdown, and then used that footage in a film that suggests that autistic people's lives are only]/i] suffering and meltdowns. And used my suffering to raise money. That, to me, is unconscionable.

There is a similar problem, BTW, with the "I Am Autism" video, which uses footage of real autistic people--some of them adults who may not have consented to their images being used in that way. I find that incredibly insulting and problematic. To use people's images to suggest that their disability is horrible, causes parents to divorce, etc...this is not okay. At all. And taking down the video from the web after a lot of people raise a fuss doesn't make it okay.

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#1 is clearly an advantage for those need the information and resources available on the website. #2 and #3 are considered groundbreaking research achievements; #2 is improving the life of some Autistic people for earlier prescreening of the condition as we speak. #3 has vast potential; the research has changed the perspective of the scientific community on Autism and the influence of environmental factors. Research is the main mission of Autism Speaks; one would expect the most significant impacts of their mission in this area.

Precisely which studies are "groundbreaking research achievements"?

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The poll results are evidence of a positive direction that some can see as a result of change on the part of Autism Speaks. At least some of the comments reinforce appreciation of this change. There are always areas for improvement. Zeraeph has expressed the contention the organization has produced no action that had a greater positive impact than negative impact. There is no evidence to support that contention, as I have provided clear evidence to the contrary. All of it is certainly not ground breaking, but clearly none of it is adversarial to the Autistic Community.

Well, I can't vote in the poll because neither of the options you provided encapsulates my position, which is roughly, "You can't gauge an organization by what it posts on a website. We have to look at concrete actions, and there I do not see significant evidence that they are changing." To me, the focus on the website skews the poll from the outset by focusing on only one factor of many, and a relatively insignificant factor at that. I don't imagine that maintaining the website takes up a significant portion of their budget.

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As part of our discussion before, if research is not something someone supports in the pursuit of a better life for an autistic person, Autism Speaks is not the organization for that person to support. That's reasonable, but it's no reason to villify the organization.

It's not simply a matter of supporting research or not. "Research" is a pretty broad category. I'm not going to say that no research funded by Autism Speaks is useful, because that's not true. But [i]broadly speaking their research priorities are not where I think they should be. And I resent that they are using my existence--because I am included in their "1 in 110" stats--and that of people I care about to raise money when very little of that money is going towards concrete gains for autistic people. I have the right to object, because they are claiming to speak for me while presenting problematic media representations and all but ignoring the bread-and-butter issues that people with disabilities face today.

And even though they may have taken down "I Am Autism," I don't think that we've seen the end of bad media representations from them. I believe they are still using the whole "Chances of your child being in a fatal car accident: 1in 24,000. Chances of your child having autism: 1 in 110" schtick, which I object to. It may not be as obviously horrendous as "I Am Autism," but I still object to it. I think their style of "awareness" promotes fear-mongering rather than genuine understanding, and I am worried that they are increasingly becoming "the face of autism" to the American public. And I think that even people who aren't completely on board with neurodiversity should be worried, too. It is never a good thing for one organization or group of people to monopolize the public discourse on any given issue. Especially when, in this case, that often comes at the expense of actual autistic people being heard. I've seen way too many articles ostensibly about autism or related issues in which not one single autistic person is quoted. Oftentimes those same articles do quote an Autism Speaks representative, sometimes saying okay things, sometimes not. But to my mind, if Autism Speaks was really interested in including autistic voices, they would tell reporters to talk to autistic people too in writing these articles/news segments. Even autistic people hand-picked by them.

But I have yet to see strong evidence that they are genuinely interested in including autistic adults in meaningful ways. I said this earlier in this thread, I think, but it bears repeating. Within the past year or so, Autism Speaks sponsored "town hall meetings" about autism and adults, inviting many autistic adults. But at the actual meetings, autistic adult weren't given many opportunities to actually speak! It was mostly Autism Speaks talking at people. That's not true inclusion.

It comes down to this conflict.

1. Autism as the entire self-identification vs. autism the symtomological model as part of a person but deemed the impairment.

Hence

a. If I am to perceive autism as an identity to relate to in day to day life and define my personality, behaviors and so on as part of my overall autism experience as a form of self-acceptance or simply self-reality why would I desire to embrace negativity.

b. If I am to view autism the disorder label as not something so very personalized but simply the barriers to overcome why would I object to awareness that seeks to end what hinders me and others whilst some more then others.

2. In Marketing a cure and or treatment potentials in research.

a. I'd frame autism simply as the barrier to overcome and although people with autism experience good positive things in life is it not about those other things but about the disorder label then.

b. If autism is my identity and people seek to treat what is my identity I'd perceive it more as a judgement of the entire self. Thus would not embrace a rejection of myself and of which I've learned to come to accept.

Conclusion

Individuals have the right to view autism and themselves any way they want. Individuals still have the right to treatment with potential absolute remedy to hardships relating to the disorder criterion. In order to preserve that right individuals also have the liberty to have autism viewed strictly as the disability aspects of the self in those subjectively uncommon, atypical or more so typical manifestations of hardships as manifest in individuals differently. Whereas some individuals experience hardships often, not often and other times an applicable hardship type is not at all applicable to another person with autism.

As to concrete actions that Autistic people have asked for the addition of John Elder Robison is significant, the marketing change since criticisms were voiced years ago, and the positive image of autism on the website.

It's a positive direction; these are concrete actions that are in response to the criticism, obviously not actions that meet the criteria of positive change for half of the people that responded to the poll; it is clear that some still do not see enough improvement that warrants what they consider to be a positive direction.

The other positive actions I listed are undeniably positive actions, although some of them were not in direct response to criticisms of the organization by autistic people, and some are not groundbreaking achievments.

The specific research that Autism Speaks helped to fund was research that resulted in a prescreening checklist for Autistic children as young as 1, and the research on 198 sets of twins that refuted the evidence of previous small studies on twins that indicated that autism is almost entirely a genetic disorder. Both studies were presented as ground breaking research in the media.

Earlier intervention can make a huge difference in the life of an Autistic person with Kanner's type Autism as verified by research.

Funding can now be justified and applied in environmental areas that have been restricted in the past by the government to genetic studies, because of previous research that indicated that autism was almost entirely influenced by genetics alone.

There is more hope in identifying environmental factors that impacts the more debilitating symptoms of Autism and modifying them, than a modification of genetic markers that number over 100 and are only loosely associated with Autism.

The government insists on research into prevention of the symptoms of Autism that keeps one dependent on society for the course of their entire life.

There is the potential that our social programs will not be intact when Autistic people need them the most in the future. The research that is being done now may be the only hope for generations of Autistic people to come. The government has no other reasonable alternative; Autism Speaks just happens to support the same mission as a result of the same concerns of parents.

While it is not as likely that genetic research is going to lead to positive change for people that currently have Autism, there is a real potential that the identification and modification of environmental factors could improve the life of people that currently have Autism.

I can't think of anything more groundbreaking than research that initiates further research that may actually make a difference in the lives of Autistic people that allow them to reach their full potential.

I see the marketing issues you bring up that deserved attention in the past that have recieved the attention and have been changed for at least some middle ground. Every charitable organization uses emotional content to raise money.

As long as the portrayal is realistic and not hurtful to others, I don't see a serious problem now. If the organization felt an apology was warranted in addition to a response to change the marketing, I think we would have seen one by now.

The change seems to me to be more important for the future than the apology that was expected in the past, but you have a right to your continued concern over an apology for the transgressions of the past.

As I indicated in the opening post there is room for more improvement in the organization and a place for continued constructive criticism. You bring up many valid areas where further improvements can be effected.

I'm a scientist at heart, I see potential in the research that many obviously do not see, and have considered environment to be the largest factor in the debilitating factors long before the recent research came out that suggests that there may be a much stronger environmental influence than before.

In reality, I understand the mathematics of economics, fully understand that social programs will be limited in the future by that math, and see research as something that may reduce suffering for generations to come.

My opinion on Autism speaks is highly colored by this point of view. I don't expect everyone to share the importance that I see here, and ignore what I see as minor issues that can be improved.

Vilification of the organization and the ideology that they are doing nothing positive for Autistic people, is just not fair, though in my opinion, to the organization or to the potential good the organization may effect for Autistic people for generations to come.

I don't consider your comments as vilification, just a difference of opinion, that I can easily accept.

The only positive impact that the current generation of Autistic people is going to have on Autism Speaks is constructive criticism. An ideology of vilification blocks that potential to create positive change that constructive criticism can bring.

For the most part it is the only way that Autistic people can support the mission of Autism Speaks; it is only a small minority of Autistics that will ever have the ability to financially support any charitable organization; by in large, we have to rely on the good will of others that don't have Autism for that.

The only real financial support we can rely on in the future, in the US, is what the government will provide in the future. It's not guaranteed though, and already of little help to Autistic people that aren't permanently disabled. Permanent disability strikes higher functioning autistic people at higher rates than the general population; it's assistance that anyone with Autism may eventually need for survival.

That is a scary potential. The same services that got me included in the community after many years of isolation may become more limited when I thought much more can be done with the limitations thus far if the driving factor was prosperity for the qualifying individuals and not just mundane work that can be found here and there within programs. In the meantime and ever since I've gotten services I've used them for accomplishing working. I know what it is like to face the prospect of potential homelessness and be hospitalized for not being able to care for oneself very well.

I still think though the world is full of possibilities and even more so now then before it's about survival and helping others given the prospects of the future. Employment whether it's intending to be a facilitation that can function to hire individuals with autism and other DD's or simply mainstream employment is important not just because it leads to more life fulfillment and quality of life by means of participation in the mainstream but the dreaded fear of little to no supports makes it very important. That's why I like to consider business a kind of strategic warfare (non-violence, non-criminal). In order to adapt to a mind-frame this is not just games and fun but serious life business. Push forward with the idea failure is not only not an option but could be the difference between isolation, homelessness and non-participation.

This whole Autism Speaks vs. Pride crap people focus so much time on to me is a distraction from the potential otherwise of a more wise and productive movement of prosperity and inclusion. Staking claim in minority based and very civil economic participation helping one another. These conflicts of philosophy and ideology are rather to me of small importance in comparison.

[youtube]http://www.youtube.com/watch?v=_AU1yyy_At4&feature=player_embedded#at=34[/youtube]

No, I cannot see anything positive because nothing positive exists and I do not feel it a healthy practice to imagine things.

No it doesn't, it comes down to whether it is a good idea to conspire in your own use and exploitation or not, with any bias, for any reason.

Well I see the Autism Speaks as trying to protect myself and others from what I see of it. If no one cared no one would support the organization. So I see something positive in that they develop this attention to autism so people can understand myself and others need help. To me they would have to really do something very bad for me to not like them for the above but I really do not partake in it.

I think it's important that constructive advocacy moves forward. I am not at all good at social networking other then getting media to do articles and organizations to support what I do. I just got the twitter tonight and not long ago Facebook and Google+. Perhaps you folks that are quite so very interested in objecting might also find some very constructive things I could try and obtain trust from you in. Other then that your text on a screen objecting to organizations that I see are creating awareness and seeking that others help.

I suppose I will learn to ask you for permission to think freely next time. Not to mention think for myself and others for themselves. It is fairly evident nothing other then only what you agree with will suffice and their will be no compromise from the likes of you. My understanding is some basics in disability rights law. Unless it's to your liking it's a conspiracy of exploitation!