Good amount of profanity, ableism, lots of ableist quotes, and extensive discussion of ableism.
Summary of 95%* of the People from the Protest of Autism $peaks
*number metaphorical, not scientific
Lydia Brown, Autistic Hoya
Monday, 5 November 2012
Protesting Autism Speaks
Before the walk began, a pair of fellow Georgetown students passed by on their way to the beginning of the walk. (I hope they didn't recognize me or know who I am.) I felt literally ill upon seeing people from my school, a school that I'm proud to attend, supporting an organization that would love to see a future in which I and people like me no longer exist. (It's a great way to be accepting and inclusive, fellow Hoyas.)
Later, after the walk had begun, I saw a man with an adorable dachshund and stooped to pet the visibly happy puppy. Immediately he noticed I was with the protest and shouted tersely "Don't you touch my dog!" Katie Miller, one of ASAN's Board members who was also there (and who had directed our sign-making on Friday), did the same, and he yelled at her, "Don't you fucking touch my dog! Don't even look at my dog!" She said that she recognized his voice from previous protests as someone who apparently enjoys screaming profane, hurtful, insulting things at Autistics who dare to voice opinions against Autism Speaks.
At one point, I saw a man I know and with whom I've conversed in the past as an ally. I thought I could trust him, because he seemed in the past to understand that the role of an ally is to do everything you can to amplify the voices and presence of Autistics and to support Autistics in letting us lead our own movement. And yet there he was at the walk, and he had the gall to tell me that while he knows I and others have serious problems and misgivings with Autism Speaks, he was there anyway. I had no words to say to that.
The worst were the people who didn't take them.
In the beginning of the protest and walk, a pair of young women, likely high school or college students, passed us, glancing at our signs, and one of them declared vehemently, "That is fucked up." What's "fucked up" is the deliberate erasure of Autistics from conversations about us, but I guess "well-meaning" non-Autistics have the luxury of picking and choosing whom they'd like to hear from and whom they'd just like to go away.
Then there was a man with autism (that's how he identified himself) wearing a baseball cap with the Autism Speaks name and puzzle piece, who got into my face and told me, "I have autism and I support Autism Speaks." When I tried twice to politely offer him our flyers, he proceeded not only to accuse me of "furthering the anti-abortion Republican agenda" and propagating "big lies" about Autism Speaks, but to repeatedly emphasize his own wish to be "cured of this disease" and to make sure no one else "has to have it ever."
Internalized ableism has tragic consequences.
But the worst, the absolute worst, was the most common response. We asked dozens and dozens of people "Would you like to hear from Autistic people?"
And dozens and dozens of people either gave polite smiles or frowns and said "No" or "No thank you" and kept walking.
Think about that.
"Would you like to hear from Autistic people?"
"No."
I don't think anything I can write can underscore the dehumanizing, erasing tactics that Autism Speaks uses more than that. To be at a walk ostensibly in support of Autistic people -- loved ones or strangers -- and then to say, explicitly, to Autistic people's faces, that no, you don't want to hear from us, thank you, and walk away without so much as looking at us reeks of ableism and silencing.
And it hurts.
"Would you like to hear from Autistic people?"
"No."
For people who often talk about how they wish non-speaking children would learn to use speech to express themselves, this is pretty damn appalling and egregiously hypocritical.
"Would you like to hear from Autistic people?"
"No."
For people who claim that one of the "core deficits" of autism is in social and communicative skills, this is pretty damn rude and unapologetically so.
"Would you like to hear from Autistic people?"
"No."
For people who claim to love us, accept us, and support us, this is about as unaccepting as you can get.
"Would you like to hear from Autistic people?"
"No."
52 comments:
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Well, this is a depressing read. FWIW, this looks to me more like "No, I don't want to have this conversation now and be told that the good deed I think I'm doing today is not so good after all," versus a deliberate "No I never want to hear from autistic people about anything ever." What we're doing right now has a powerful momentum that's difficult to interrupt, and our need to believe in the value of our actions is also powerful, especially when those actions are well-intentioned. Still, I'm not defending them.
ReplyDeleteOn the upside, your presence and banners will come to mind for some of those people when they hear about Autism Speaks again, especially if they're exposed to further criticism. It's all part of the drip-drip-drip.
Actually, I didn't try to pet his dog. I saw lots of dogs coming along in one spot and said to the blog of dogs, "Aww, Happy dogs! It's a dog parade!" or something silly like that. I got in response, "Fuck You! Don't you even look at my dog! Don't you fucking look at him!"
ReplyDeleteI also got a lot of:
"Would you you like to hear from Autistic people?"
"We've got one, " as they kept on moving.
As if that makes it ok. Do they want people to ignore their kid when he grows up and tries to speak for himself?
Thank you for the correction, Katie. :)
DeleteLydia, I will share this post. Lydia and Katie - This is horrifying and sickening and very, very upsetting. I hate that this happened. I hate that you experienced this. The responses you received are heinous.
DeleteI am incredibly grateful to you for standing out there on the front lines, for writing about your experience and for talking about this.
"We've got one" makes me want to cry. Like an autistic child/relative/friend is a belonging, a thing to have, rather than a person with their own mind and motivations. You "have" your token autistic person, so you can ignore all the rest. Hell, you probably ignore "yours" too.
DeleteBlob of dogs, not blog of dogs, hehe.
ReplyDeleteYes, the plan is TO ignore their kid and keep the kid eternally infantilized. Depressing. More "don't bother me with facts, my mind is made up."
ReplyDeleteI want to hear from an Autistic person.
ReplyDeleteCan I access your flyer online?
x
The flyers have been linked!
Deletegots them! and shared ox
DeleteLydia! Link to the flyers!
ReplyDeleteThe link to the flyers!
ReplyDeletehttp://autisticadvocacy.org/wp-content/uploads/2012/05/Autism_Speaks_Flyer.pdf
Lo and behold!
So it's important that Autistic voices be heard...but not if the Autistic person in question wants to be cured? Not if the Autistic person disagrees with you?
ReplyDeleteI sympathize with your desire to be heard, but you can't have it both ways. Your dismissal of the man with autism's opinion as a product of "internalized ableism" seems to contradict your position.
Nice derailing there. It's pretty disingenuous to put one person's saying that this is the product of internalized ableism on the level of the actions that parents, professionals and organizations who have immense power over the Autistic people in their lives and over the public discourse about autism take and have taken to effectively shut out Autistic participation in much of this discourse and its results. There's nothing here to even indicate that the author or any of the other protestors even did anything to shut this guy down or silence him.
DeleteAnd what, if not internalized ableism, do you call someone wanting no one like them to exist ever again on the basis of disability?
Not if the person demands imposing that on others, not in the person doesn't care that they selfishly joins a group abusing other autistics, not if it's made clear the person's problem isn't autism but their rotten attitude, not if it's made clear the group he joined shuts out autistic voices
DeleteIt would be like treating a pig for having mottled fur by turning them in to a cow because "mottled fur pigs are dangerous", even though the pig is dangerous simply because it's an asshole
Terry: I'm not putting it on the same level. I'm saying that being dismissive of this Autistic person's opinion appears to conflict with a desire to make Autistic voices heard, not that it's equivalent to actual silencing. Sorry for the confusion.
DeleteThe claims on that flyer have been challenged numerous times in the past, by many people, and answers are provided on the Autism Speaks website that refute some of the claims stated in the flyer. However it's not just Autism Speaks disputing the claims, it is actual diagnosed people on the spectrum taking the time and effort getting to the bottom of what is fact or misinformation.
Deletehttp://www.wrongplanet.net/postt213857.html
Most of the folks participating in the walks, are educated enough about what Autism Speaks does to quickly spot claims that are not substantiated. While there is the right to protest, most people are not going to take kindly to what they see as an antagonistic effort against their volunteer efforts. That is just human nature, off or on the spectrum.
While I don't participate in the Autism Speaks protests or Walks and don't condone people using offensive language toward anyone that disagrees with their viewpoints, it could provide the protests more credibility and respect if information was provided that was not easily refuted.
But, there are always going to be people offended at people on or off the spectrum protesting any charitable volunteer event, as one could imagine what might happen if someone was protesting a March of Dimes walk, or any other charitable volunteer event.
It is literally beyond comprehension of most people that anyone would protest a charitable volunteer event.
And the reality is that the two young girls offensively outwardly expressed what was likely on 99% of people's minds, not outwardly expressed, other than strange looks and some frowns, and internal language as simple as "why"? or "this doesn't make sense", people protesting against us for helping our self, children, friends, or family.
The flyer does not explain anything about neurodiversity; it is obviously perceived as a kick in the teeth by some that are trying to help people on the spectrum participating in these volunteer walks.
And, it could reasonably be perceived as condescending and/or offensive to ask some of these people if they want to hear from an autistic person, when they are already listening to the people on the spectrum in their lives on a 365/year basis, whether it is listening to them talking or making sure their needs are met, everyday. And not only that, the known genetic potential and reality, that some of the people walking without an official diagnosis or a self diagnosis, are just as or more autistic (if there is such a thing) as some of the folks handing out the flyers. It is a potentially ableist comment to ask any of these people if they want to talk to an autistic person, for that specific reason.
It is worth noting that Aspergers was not even an available diagnosis, when most of the people in these walks were at the usual age of diagnosis. The diagnosis is only 18 years old. These walks are the genetically most likely place of all, one would find people adapted to life on the spectrum, all in one place, without knowing it. Never a "nothing without the broader spectrum" planned or walked in. And ironic, that the people holding the protest perceive they are being silenced when they are ignored by those participating, when the purpose of the protest is to silence those from walking and participating again in a volunteer effort together, many likely somewhere on the spectrum.
Do you think it is possible that many of those who said "no thank you" to your attempts to engage simply responded to you as they would to any individual that approaches them, whether it is an mall employee trying to sell handcream or someone handing out coupons or other paperwork on the street. They may not have even heard what you said- they simply politely waved you off quickly and curtly. It may have had nothing to do with their interest in hearing what autistic have to say.
DeleteKatie Mia, I've read that, and most of the defense they do involves equating Autism Speaks with Autism Society of America. TWO VERY DIFFERENT SOCIETIES. It doesn't make sense. You don't get to defend Autism Speaks by defending an entirely different society that isn't Autism Speaks. It doesn't matter that Autism Speaks SUPPORTS an organization that has some autistic people represented on their board, it matters that they don't have autistics represented on their board.
ReplyDeleteThere are only two points in that link associated with the Autism Society, one about one active board of directors members, and two parents on the board of directors with children, and one about the fact that the organization contributes 4% of their revenue toward grants for families at $145K and Autism Speaks contributes 4% of their revenue for family service grants that equates to 2 million dollars a year, the highest amount of any national advocacy organization, per government required public disclosure of the IRS form 990's. The organization leads national autism advocacy organizations in dollar amounts for family service grants, as evidenced and yet are criticized for their efforts on that fact sheet. That is misinformation. And it is simply not fair to leave it without a correction as ASAN has been informed of it, unless there is malicious intent toward discrediting the Autism Speaks organization. Which is likely how it comes across to most of the walkers receiving that information at the protests, who are completely aware that Autism Speaks is the nation wide leader among national advocacy organizations in providing family service grants. Along with all of the other evidenced points refuting the other information on the Autism Speaks "fact" flyer, in the link I provided. Most of the refutation of the misinformation comes directly from the Autism Speaks site, in the form of facts, that many of these walkers are fully aware of.
DeleteThere are disclosures on the Autism Speaks website that John Elder Robison is on their scientific advisory board, the founder has a grandson with Autism, the vice president has a son with autism, and 11 board members have children with various autism spectrum disorders. It is an ableist suggestion to suggest that any of these individuals are what is described as a "neurotypical" individual.
The Autism Speaks official in the interview linked in that thread on Wrong Planet I provided indicates that the organization has more than one board members and employees working in the organization, on the spectrum. It would be illegal to disclose their identity without authorization from those individuals, because of privacy laws. There are many people that do not disclose or seek a diagnosis, some of whom I know on a personal basis in the research field, and many other areas in life, because of concern they will be passed over for opportunities in the workplace, there children might be taken away from them, and numerous other personal reasons. They have every right to make this personal decision, and not be expected to answer questions by the public on their personal medical information. But, the fact remains that autism spectrum disorders are in part genetic disorders, and there is every potential that at least one or two of those thirteen people with children on the spectrum may have gone undiagnosed in life, and adapted as so many adults with milder ASD's like Aspergers Syndrome have, in life through a great deal of effort that is no less commendable than anyone else speaking in this conversation.
Even you admitted they are about the same in percentages as other autism charities, which often have the same ableist attitudes as Autism Speaks does. The only reason Autism Speaks is more heavily criticized is because it is the most visible and biggest autism charity. ASAN giving the correct percentage is not misinformation - it is a fact. "But other autism charities do the same thing" doesn't make it less than a fact.
DeleteHaving an autistic grandchild or child doesn't make you an honorary autistic person. It isn't ableist to suggest that neurotypical parents of autistic children are still neurotypical. Also, the flyer says that AS doesn't have autistic people within the board of directors or main leadership. The board of science is not the board of directors, so to frame that as misinformation is ridiculous. The point is that autistic people should be in the main leadership of the organization and we are not. The fact that they have employees in lower levels does not in any way allay that fact.
Quote from the fact sheet you are referring to:
Delete"Very little money donated to Autism Speaks goes toward helping autistic people and families."
"Only 4% of Autism Speaks’ budget goes towards the “Family Service” grants that are the organization’s means of funding services. While 44% of its budget goes toward research, only a small percentage of this research is aimed at improving the quality of life of autistic people. Most of the research that Autism Speaks funds is devoted to causation and “prevention,” including the prospect of prenatal testing."
2 million dollars is not very little money donated, as it is the most amount of money donated to any national autism advocacy organization in the United States, including organizations run by people disclosing they have a diagnosis or self diagnosis on the spectrum. And in the link I provided there is clear evidence from several different sources that autism speaks is not funding research for a prenatal test, as well as evidence that the majority of research funding goes toward improving the quality of life of people on the spectrum; it is clearly analyzed on a pie chart in the link provided by the wrong planet website.
You are making an abliest suggestion in your armchair analysis of these 13 parents of children on the spectrum many of whom you have never seen in real life, in your suggestion that they are neurotypical parents. NT parent of a child on the spectrum, is an oxymoron of a generalization per armchair analysis, considering the scientifically understood genetic ties of similar genetics/neurology among families and children on the spectrum. What you appear to fail to realize is how diverse the spectrum is when you state that we are not on the Autism Speaks Board of Directors; you have no idea who we is, when you are talking about the board of directors or anyone else in society that you casually observe, as how an armchair analysis may relate to how atypical those individual's neurology may be per the neurology that may underlie autism spectrum disorders. That is between them and their physicians, and/or personal decision of disclosure or non-disclosure of any medical disorder identified or self identified. And it is certainly not any of Autism Speaks business to disclose that information, even if they have been informed, without permission.
As much as John Elder Robison's contributions to the Autism Speaks organization have been denigrated as unimportant by self advocates, I couldn't blame anyone for not seeing the need to disclose their diagnosis on a board of directors from autism speaks, to deal with the potential of that type of public denigration, or even a potential public protest against them. There is a post here that suggests anyone on the spectrum would have to be out of their right mind to work with the organization, specific to the context of John Elder Robison's appointment to the scientific advisory board. That's a prize from the self advocate community for someone on the spectrum that steps up to take a part of the decision making process for Autism Speaks, in their research focus.
It can be a no-win scenario, because to date, whatever autism speaks does, or any person on the spectrum does to support the organization, reasonably positive or negative receives the same response among most self-advocates, a negative one.
I'm not so sure that the fact that I was not diagnosed with Aspergers Disorder, does not make my way of thinking much different than most people I come across that are self-advocates, because I don't have it in me to make these kind of emotional/personal jabs at people or organizations, that objectively can be evidenced as helping people.
When someone donates a dollar, 4 cents of that dollar goes to family services. That IS very little, in the scheme of their donations. Two million is a lot to me, certainly, but it's very little in the scheme of the Autism Speaks budget. "Very little" is an incredibly relative term, but with respect to the entire AS budget, yes - the money going to family services is very little.
DeleteAutism Speaks has been working on pre-natal testing as recently as 2010: http://www.wrongplanet.net/postt134955.html. Possibly they will stop, but you can't blame autistic people for not trusting them. And as I stated in another comment, their attitudes still perpetuate ideas that make people push for pre-natal testings for autism.
This is what I know - for something to count as representation, people have to KNOW it's representation. Sure, it's fine if someone wishes to keep their disorder private between them and their doctors. However, if someone works for an organization about autistic people, they have to realize that not disclosing that information generally will lead people to believe they are neurotypical. That's not ableism, it's reality. In a somewhat similar situation, if all the heads of a queer organization say they are straight and cisgender, they can't be mad when people become worried about the lack of queer representation in the board of that organization. You're also making strangely non-sensical causation-reaction relationships. People actually began hating Autism Speaks AFTER they realized things like the lack of representation on the Board of Directors. You make it seem as if it is the other way around. There would have been less backlash from the autistic community if there was autistic reprentation on the board.
Also, let me point out a quote from one of those articles you provided, that proves that when they say cure, they are not talking about treatment: "Do I want to develop therapies and tools to help him have a better life? You bet. Would I call that a cure? Of course not. I would call that helping him learn to fit in and get by." So what do they mean when they talk about finding a cure?
You talk about personal jabs, yet you are the one who seeks to come on Lydia's blog to discredit her.
That was not an Autism Speaks organizational response, that you quoted, that was a general response from a person in the discussion in that thread, that I provided to the link, from a father of a child with regressive autism.
DeleteAutism Speaks was talking about the potential of the development of a prenatal test years in the future, in the link you provided, but they decided not to fund the development of a prenatal test.
There are two large research organizations one in California and one in Australia conducting five year studies toward the goal of an actual prenatal test for autism. Autism speaks has chosen not to fund this research, however it is not going to stop it from happening, and they have no influence on that decision. The government of the US is funding 335 million dollars, just in the year 2010, for the general goal of a cure for autism spectrum disorders, and they are funding the research for a prenatal test in California.
Autism Speaks has very little impact on those dollars, as they only funded 18 million dollars in 2010, per reports from the Interagency Autism Coordinating Committee. The Simons foundation funded three times as much at 53 million dollars, and other smaller organizations at 2 million dollars.
I do not take personal jabs at anyone, and there is no record of that in any of my posts. I can disagree with an opinion and still have complete respect for an individual holding that opinion. I like a lot of what Lydia has to say here on her blog, but do not agree with everything, and she is one of the few that does not silence other people, on the spectrum in these type of blogs, if they disagree with her in a respectful manner.
Sexual orientation does not require a thousand dollar diagnosis, it's not an analogy that works well with Autism spectrum Disorders, as far who is diagnosed and who is not. It's a much more complicated issue, and one that deserves consideration of that complexity. It's not intentional ableism until one is aware of the full implications, and ignores them. Paula Durbin-Westby has a recent blog that covers that issue in more detail.
I apologize, I made a mistake in my response above, I remembered incorrectly on the person that made that comment; it was John Elder Robison, who while he agrees with the definition of cure that Autism Speaks uses per remediation of disability, he does not agree with the usage of the particular phrase, "curing autism", and does not agree with Autism Speaks continued usage of the phrase. It is possible, though, that his viewpoints, along with the offense expressed by some others, may have influenced the reduction of the usage of the phrase by Autism Speaks, on their website in their research section, and on the "what it means to be on the spectrum" section.
Delete"Autism Speaks has very little impact on those dollars, as they only funded 18 million dollars in 2010, per reports from the Interagency Autism Coordinating Committee. The Simons foundation funded three times as much at 53 million dollars, and other smaller organizations at 2 million dollars."
DeleteSo, you're admitting AS gives money to pre-natal testing? And it's funny how you were talking about how much two million dollars was, but suddenly when the number increases 9 fold, it becomes *just* 18 million dollars?
As someone who is a queer autistic person, I am fully aware of the differences between sexual orientation and autism, thank you very much. That doesn't change the fact that informed self-diagnosis of autism is possible, and in my opinion, should be respected with proper research. So no, a 1,000 diagnosis is not necessary. There are of course, differences between sexual orientation, gender identity, and autism - real differences. But they are both aspects of me that have stigma attached to them, and for this, the analogy holds.
And how is the fact that they don't even listen to the one autistic person who's on one of their boards a positive thing about Autism Speaks?
No I clearly stated that Autism Speaks was not funding prenatal testing, they made that clear in the official interview they provided, and it is also clear on all the historical documented research projects, on their website, as well as their restrictions for research for the current year, documented on their website.
DeleteAutism Speaks is not the largest private non-profit organization funding Autism Research toward the general goal of cures for Autism, the Simons Foundation is the largest private non-profit organization, and provides no funding for direct support for family services. That is not part of their general mission goals nor is it part of Autism Speaks general mission goals, but Autism Speaks still provides 2M for family service grants because they do many more things than the Simons Foundation does above and beyond research science toward the general goal of cures for autism spectrum disorders. The government is the leader in research at 335M and obviously the leader in direct support at billions of dollars annually, but is not funded by charitable contributions.
The dollars I was referring to were the 408 total million dollars provided in the US toward the general goal of cures in Autism Research. That was not a statement directed specific to prenatal funding dollars, it was a statement that Autism speaks does not have the power you might think they have because they are not the largest private research organization in the US.
You made the statement earlier that Autism Speaks gets criticized for their 2 million dollars of family service support because they are the largest autism charity, but you were incorrect, as the Simons Foundation is the largest autism charity providing three times more money for research than Autism Speaks, that alone exceeded the total revenue of Autism Speaks in 2010, with zero funding for family service grants.
Autism Speaks provides as much money for family service grants as all the other smaller private charitable research organizations, reported by the IAAC, in combined effort, at their 2 millions dollars that goes toward Autism research toward the general goal of cures. It is not usually a mission for research organizations to fund family service grants, but Autism Speaks adds in that goal as an additional one.
Autism Speaks does not have a huge impact on research, nationwide, but they do have a huge impact on family service grants per all national charitable autism advocacy/research organizations. As they come close to equaling the efforts in family service grants of all those other national advocacy/research organizations put together. From the facts that exist ASAN should be praising Autism speaks efforts toward their 2M toward family service grants not criticizing it, and everyone that has read their annual report, which includes their supporters and walkers that visit their website are fully aware of that 2 million dollar effort.
Part 2 below:
Part 2 of comment above:
DeleteJohn Elder Robison makes contributions to the scientific advisory board, and he is listened to. His area of expertise is not marketing or public relations, nor is that a usual area of expertise among folks actually diagnosed on the spectrum, for obvious reasons. It is part of the reason why different ways of thinking for charitable organizations are a necessity, and the "autistic way" of thinking per positive attributes is evidenced out into up to 30 percent of the population without a diagnosis, so no organization has to have a person diagnosed to have that contribution of input of different way of thinking.
Many people self diagnosed are on the broader autism phenotype, and would not be diagnosed by a professional, unless they were determined to have symptoms that impair one in a major area of life functioning. That is a steep requirement, and not one that diagnosing professionals take lightly. However that does not negate the reality that many people, again, up to 30 percent have a least one autistic trait and score high on screening tests, so they are perfectly welcome to identify as autistic by personal preference if they want to, but will not meet the legal definition of a disability without a medical diagnosis.
Autism Speaks is a scientific organization, they are never going to publicize a self-diagnosis, as a diagnosis for any of their board members, or any speculation over Jefferson, or Beethoven of having an ASD, as any of these actions would reduce their credibility as an organization supporting science, which is the main focus of the organization. It is ableist to personally assess others as neurotypical, because science has refuted the idea that there is a neurotypical majority among humans. If one wants to refer to it as specific to official diagnosis, the way the term was originally defined, that leaves out a lot of self assessed individuals.
At least for the characteristics of Androgyny, there is an evidenced correlation in Aspergers in males and females. If you haven't read the research, Emily Willingham provides an excellent critique on it, that she too can identify with, on the Thinking Person's Guide to Autism.
It is very possible that every androgynous person one sees on the street, has some autistic like traits, if this research proves replicated, however that does not mean that all those individuals would be considered as significantly impaired in a major area of life functioning by a diagnosing professional. But who cares, they still can have the positive autistic traits that people cherish, without the negative ones. That is the whole idea behind research removing the significant disability, not the special abilities that allow some great success in life.
All they would have to do is say "___________ is autistic." No one's going to ask them to post their diagnostic report on the web.
DeleteAnd I've shown you proof they did fund pre-natal screening research in the past as late as 2010.
Your condescending tone is very triggering to me though, so I'm getting out of this discussion.
Autism Speaks in the link you provided, quoted below, did not state they were funding research for a prenatal test for Autism. They discussed the difficulties for such a test to be developed, the fact that it was years away from development, if achievable, and hoped to accomplish it to temper developmental abnormalities. The organization decided not to fund a prenatal test, and as evidenced at the UC Davis MInd Institute and in Australia, research funded by other sources, is in pursuit of a prenatal test to temper developmental abnormalities, but again, Autism Speaks chose not to; that is documented in the funded research from the organization's website, and directly from a statement from an executive official from the organization, that I linked to.
DeleteMany people do not desire to publicly share their diagnoses/self diagnoses for specific reasons, such as career implications, concerns over guardianship of children, and many other reasons. It's not a matter of posting documentation of an actual diagnosis that makes a difference for some of these people, it is the public disclosure to others that they have a medical disorder, whether documented on the web or personally disclosed.
Quote from the link you provided:
"Embryo biopsy and genetic screening, though very accurate if done correctly, could be a useful approach. However, this method can only be conducted in an in-vitro fertilization (IVF) lab utilizing the IVF surgical process (conception would have to be artificial). Screening could only tell you if the genes are present or missing and NOT how they are functioning. A genetic screen is only definitive if the genetic component is dominant. Meaning, that if you get/lose the gene you have the disease. Again, Down syndrome is an excellent example.
An added caveat to this is elected abortion. Science can resolve many problems, but it also can create them. Cleft pallet is a developmental state that can be detected in the third trimester of gestation. Though benign in of itself and certainly surgically correctable with minimal to no scarring, it currently ranks as the second most common reason for elected abortion in the UK. The reason being is that there is a weak association of cleft pallet and the possibility of mental retardation. Meaning that there is an observance that babies born with a clinically diagnosed form of mental retardation sometimes also have a cleft pallet. This does not mean that a cleft pallet is a sign of retardation. It only raises the risk by association. Regardless, this observance by ultrasound late in gestation is enough for some to elect for an abortion.
Ultimately, the goal of a definitive prenatal test, if achievable, would be to have gestational intervention to correct or temper any developmental abnormalities. I certainly hope we can accomplish this, but we are still years away from such an accomplishment."
I apologize, since my style of pedantic communication is perceived as condescending to you, but it is not directed at you in a personal manner it is directed at the facts as they pertain to this issue. Actually you are the one that stated I was making "strangely non-sensical causation-reaction relationships". I have enough respect for you not to suggest your communication or ideas or strange. Although I am not expecting you to apologize for an offensive sounding statement directed at another person, as that may not have been your intention. Communication between people on the spectrum requires quite a bit of patience and tolerance, if different opinions are to be heard.
This might be a spellcheck goof, but "pallet" is a flat wooden thing used in warehouses, and "palate" is the roof of the mouth.
DeleteDefinitely a mistake on my part, that I'm not going to be able to blame the spell checker for.:). Another convenience of life, where one can afford to lose a little more attention to detail. Overall, that's a good thing for me.:).
DeleteAlso, I look on their page and it still clearly states that they support a cure in their about page "Since then, Autism Speaks has grown into the world's leading autism science and advocacy organization, dedicated to funding research into the causes, prevention, treatments and a cure for autism; increasing awareness of autism spectrum disorders; and advocating for the needs of individuals with autism and their families. "
ReplyDeleteThere is currently no cures for autism disorders, that is made perfectly clear on the autism speaks website. But the organization clearly identifies how it defines cure both in their research section and in the section on "what it means to be on the spectrum".
DeleteThere are 2027 impairment combinations just for a diagnosis of autism spectrum disorder, per the research scientist Jon Brock, on the crackingtheenigma website, and it is also identified on that website that it is possible for one person with autism disorder to share 6 completely different impairments out of the 12 impairments of Autism disorder. The causes that underly those 2027 impairment combinations may be even more complex.
Autism Speaks defines cure, as clearly linked in several places in that wrongplanet website link I provided, as the remediation of severe symptoms and struggles, with the disorder and co-morbid conditions as well as greater acceptance and support for those that do not seek a cure or remediation for their perceived less severe or not severe at all symptoms. It's unfortunate that some people cannot see the definition of the word cure as Autism Speaks intends it, but they cannot force anyone to read the definition, or find less offense in a word of hope for millions of people in the US, that simply means their children, friends, or families, may have the perceived burdens of their difficult symptoms in life lifted a little to have a more comfortable life, as a result of the research and efforts that autism speaks and many other organizations in the US support to help people on the spectrum.
Most of the people in these walks, don't experience the severest of symptoms associated with some ASD's and co-morbid conditions, but they have enough empathy to attempt to put themselves in the shoes of those that do, and are dedicated to make a more comfortable life for those whom they express empathy for.
It's not likely hard for most or them to generally relate to someone in a business suit handing out flyers at any public event; that is a common experience in life, that most people will ignore, from a first glance, whether it is a protest or sales pitch, but their concerns in life for their friends and family on the spectrum are much, much different, for many of these walkers, and that is environment that is where there focus is, not on a sales pitch or what they might view as an unusual protest.
Okay, well the interpretation of the word "cure" that AS is using, if that's the case, is not in fact the way that I would hazard to guess MOST people implicitly understand it to mean.
DeleteI do not believe that they do not know this.
And it makes me think that they're being deliberately slippery.
Funnily enough, words have meanings!
Deletea : recovery or relief from a disease
b : something (as a drug or treatment) that cures a disease
c : a course or period of treatment
C may possibly be what they mean, but that doesn't change the fact that a and b are more common meanings of the word c. When people call for a cure to autism, they often explicitly mention that they want it to be eradicated completely. Autism Speaks can never erase the other definitions of the term "cure," and people (both autistic and non-autistic) read into that term. It is an ableist term when applied to Autism, and no matter what AS *means*, they are still perpetuating ableist ideas. They are still perpetuating ideas that lead people to push for pre-natal testing research. They are still perpetuating the idea that we need to be eradicated, no matter what their intention is in using that phrase.
Also, I think you severely overestimate the extent to which people walking in an AS walk are educated about the organization.
Chavisory I agree with you there, as while there may be 2 million people visiting autism speaks website and 450,000 visiting their website, that walked in the walks and other volunteer events in 2011, reported on their IRS form 990, for a full definition of what they mean by cure; that is about .6% of the population.
DeleteAmong the rest of the 99% of people that might see the word cure, not understanding much about Autism, and don't follow links for details they will likely think that autism is one thing and there is the potential for one cure.
Autism Speaks website goes into incredible detail, to void that perception, but that perception I agree will likely not be voided if one does not do the legwork to find out more about Autism Spectrum Disorders.
Autism Speaks website is the most popular place that people do learn about Autism, so even if only 2 million people get an expanded picture of what Autism is per those adults on the spectrum, it seems to be a worthwhile effort to me. If you haven't seen their page on what it means to be on the spectrum, I suggest you look at it and make a judgement for yourself.
I really don't see the organization using the word cure that much anymore, even in the research section of their website. I suppose it is possible they may eventually drop it from their general mission statement, if they can find a concise enough way to describe that general goal, without using the word cure, and without the potential of further offending someone else with another word, someone could see offense in.
Almost every word in the English language is slippery as some can see one word as hope and others can take one word as a four letter word, when it comes to cure. Of course they are aware of that; they have elite marketing experts on their organizational team, but the organization is run on a business model, and a science model, with decisions carefully weighed for the purpose of meeting the organizations goals and missions. At this point the organization has determined the cost benefit of keeping the word cure in their mission statement is the best way of communicating their general goals.
The 10% fundraising increase of Autism speaks in 2011, in hard economic times, is evidence they are fully aware of what they are doing, and doing it well. And the real life implications of that increased fundraising effort was a half a million dollars more toward family service grants. That's 10 percent of their increase in revenue, that will likely continue to increase at that rate as their general revenue increases. That is a win-win scenario for many people receiving the direct benefits of the effort, on the spectrum. And part of the cost-benefit analysis of continuing to use the word cure in their general mission statement.
When a group takes a name like Autism Speaks, that group has an incredible responsibility. The implication is that you are speaking for Autistic People. If Autism Speaks is not listening to the adult autistic community (All of them-including the people they dismiss because they are so called high functioning) and Autistic people are not represented on their boards, then maybe they should go with the name Relatives of People who have Autism Speak. I hear all this justification for using the word "Cure" but just like with the name Autism Speaks. This is all semantics. The truth is that both are misleading and that is what is hard to swallow about the so called "doing good". "Doing good" really is in the eye of the beholder. The truth is that the needs of Autistic people and the needs of their caretakers are very different. Romanticizing the needs of the caretakers and then forcing them on Autistic people is crazy. My husband is Autistic and there are times when he drives me absolutely crazy, but if he wasn't autistic, he wouldn't be the man I love. If some one had tried to "cure" him ( Even your definition of the word cure) he would not be who he is. The one thing that has made him truly happy and has the effect that a "cure" would is ACCEPTANCE. My husband does not suffer from Autism, he suffers from the ignorance of others who are unable to accept who he is.
DeleteWanting a cure for autism doesn't mean I don't want you to exist, it means I want you to exist without the complications that autism represents for many. I'm autistic, and I would be happy to be cured.
ReplyDeleteI look at what I would lose, vs. what I could possibly hope to gain in a "cure," and I know that it couldn't possibly be worth it. I wouldn't be the same person. I wouldn't hear and feel and love the same way.
DeleteIf you'd like a cure, fine, but don't tell me that you just want me to exist without the complications of autism. There's no such thing for me.
Autism Speaks makes it clear both in the link I provided and on several places on their website that I have identified that they are not looking to cure anyone that does not want to be cured, and are completely aware that some people are only looking for acceptance and greater potentials in life, like the ability to secure employment. If you type in what it means to be on the spectrum and autism speaks there is a picture of a young girl with Aspergers syndrome or HFA, working in a mainstream job at home depot portrayed as happy as any other person in the world, with emphasis on the strengths that people have on the spectrum.
DeleteThis is the view of milder forms of ASD's that are provided to millions of people that visit their website for the awareness that people on the spectrum are diverse, and some do find success and happiness in life. In fact there are no photos of children that could be discerned as any less happy or well adjusted in the world, than their current PSA's and pictures of children portrayed on their website. It actually is to the point now where Autism Speaks is portraying a somewhat sugar coated visual portrayal of the spectrum, but that is what people have been asking for in their criticisms of the organization, and that is how the organization has responded to those criticisms, in a constructive way, not the deconstructive method used in these protests with flyers that have misinformation in them.
If I was in the walk, I would probably carry that webpage of that girl happily working, with all the strengths emphasized and provide it for the protestor to become better educated on what it is that Autism Speaks is actually doing for awareness and acceptance efforts, vs. the urban internet myths that continue to be spread around about the organization, that have no basis in fact.
But, I could never survive in DC, not even one day, to do this with the severity of the symptoms of my condition on the spectrum, so all I can do is type it out, in long winded conversations, as I have a very difficult time expressing anything verbally anywhere.
Thanks Lydia and co. for making a principled stand and trying to educate people about Autism Speaks. Autism Speaks definitely does NOT speak for me, or the many many other autistic people I know.
ReplyDeleteI do not want to be 'cured' and I really feel sorry for anyone who does want to be. I especially feel very sad for all those whose parents want them to be cured. What an awful start to their life.
I hope people find the self-acceptance they deserve and that the parents who struggle to come to terms with autism find a way of loving and accepting their children as they are. My objection to Autism Speaks is that it is a vocal obstacle to this end.
hi,
ReplyDeleteam so greatful for getting in there and protesting their BS,thanks so much for putting the effort into it and not taking any BS!
am in the UK and we dont have any autism organisations like them but have dealt with many a autism speaks supporter on their original/very first forum!
most of them are autism ignorant and have not got a clue what autism is outside of their own child or their childs fellow school students and they really shoud take a look at their behavior at this protest,its disgusting how they treated autistic people-woud personaly report the guy who was agressive over the dog to the police because that is bordering on disablist hate crime though am not sure how the laws in america treat it there.
am personaly >pro choice< when it comes to lessening the autism via future medications because it shoud be freedom of choice,and a cure will never happen but they will probably find pre natal markers-if they do hopefuly we will have enough new awareness of autism to offset the bull crap that autism speaks and the like are pushing,that is what has happened with down syndrome over here.
am disgusted that a organisation puts more public money into cure research than into supporting the american autistics who exist NOW, they honestly do not give a damn about autistics they just want to keep pushing this view of a tragedy so people can feel like victims for the rest of their lives and treat their poor child like a burden.
they DO NOT speak for those of us with severe or profound autism, am severely autistic and was treated like crap by them because was communicating on a forum,aparently we are not severely autistic if we dont match their young childs experience of autism-anyway of course a toddler is not going to be using the internet or a laptop?
have lived in institutional/residential care for many years and in current centre the profoundly autistic adults am living with are more functioning than self-they are able to go to a mainstream college to do a special course and do a job one day a week,one of them woud also use his laptop and the internet all day if he coud do! their parents have a positive view of autism and interact with all of us,am fed up of this delusional mentality pushed by AS,bugger off-are not wanted by the very people who are being wrongly represented by this cult.
[apologies for length of post]
http://blog.autismspeaks.org/2011/04/26/ido-kedar-speech/
ReplyDeletePeople without a verbal voice on the spectrum are provided opportunities to speak by Autism Speaks. Those voices are worth sharing, regardless of who provides those opportunities.:).
Obviously, the writer and the autistic people represented in these comments are on the high end of the spectrum and sound like brilliant, amazing people. You are going to university, you will lead high functioning lives with jobs. Your parents likely don't have to worry about how you will be cared for after they die. I'm scratching my head at how you equate 'finding a cure' with 'we don't want you to exist'. I don't understand it. We want to find a cure for cancer so people can lead healthy lives to their fullest. I'd like a cure for autism to be found so my nephew who is on the low end of the spectrum. Who will never live independently. Who will never go to a mainstream school. Who will likely never marry or have a job. I'd like him to be able to live his best life and enjoy his life. Because I can tell you by the tortured looks he gives when he's at the playground and wants to join in but can't....he would like to find a cure. And he would still be the same amazing, loving nephew that I have now. He would just be allowed to live a freer live. Sue me if I want a cure. And sue me if I think any amount of money going into research is money well spent.
ReplyDeleteIf cure was really the issue, in the argument, the focus would likely be addressed on 96% of the research dollars toward the general goal of a cure in the US, not the 4% autism speaks provides. If a Prenatal test was actually the issue the focus would likely be on the five year UC Davis study and the five year Australian study that is actually funded by the government and sources in Australia for the goal of developing a reliable prenatal test for Autism, for potential earlier developmental intervention.
DeleteThe issue appears to be Autism Speaks as a "football team" that some people can share expressed "anger for" to bond each other together around "internet water coolers".
The evidence is clear as this is the most popular topic to get hits in any blog or facebook autism oriented online discussion among people referring to themselves as autism self-advocates, or autism disability advocates.
Number 2 is "NT" parents of people on the spectrum, and number 3 is the rest of the "NT" world. It simply appears to an be an us vs. them mentality for some, the tribal instinct that most humans share to some extent, but there is really no longer anything of solid substance to criticize Autism Speaks for, so the hatred is losing fuel, at least among some. The anger expressed for "NT" parents and the rest of the "NT" world, will likely be an eternal source of bonding/tribal instinct anger for some.
If there was really a tribal instinct of compassion, for bonding, for your nephew and others like them, there would be support for remediation of his severe symptoms that are causing him discomfort in life.
Fortunately, there is real support for that other much larger part of the "Autism Tribe", that includes parents families and friends, as well as those on the spectrum, that have a common source of compassion, bonding each together, for those like your nephew, for remediation of his severe symptoms, to provide greater comfort in life.
Autism Speaks is only one source of that common effort; there are literally over a thousand other organizations in the US that bond similar others together, for that purpose and effort, to provide greater comfort in the lives of some on the spectrum, that are in dire need of it.
Words on the internet are not going to accomplish that, it takes organizations both public and private, and millions of caring individuals, and billions of dollars, to make it happen. Fortunately those people still do exist, in the millions, in the US and other areas of the world.
There is nothing possible for your nephew and others in the future, for remediation of severe symptoms or support, without those "neurotypical" individuals, and the many others that volunteer on the spectrum, for that common bond among people that care about all others that do indeed struggle most every day on the spectrum.
This is just my opinion, it could easily be proven wrong, with just one highlighted protest against the "Simons Foundation" providing three times the funding for research toward a cure, or the actual prenatal test studies that are being funded in California and Australia. Instead there has been absolutely no mention of complaint for the Simon's Foundation or California Study that I am aware of anywhere on any of these blogs or facebook related sites. At least to this point, I rest my case.:).
"Obviously, the writer and the autistic people represented in these comments are on the high end of the spectrum and sound like brilliant, amazing people. You are going to university, you will lead high functioning lives with jobs."
DeleteHave you seriously not gotten the memo that you can't tell *anything* else about a person's life by how well they write blog posts on the internet? Some of the best writers I have ever known are actually not termed "high-functioning" in real life.
"Because I can tell you by the tortured looks he gives when he's at the playground and wants to join in but can't....he would like to find a cure."
No, you don't know that at all. Those two things do not equate. Lots of us have had that very experience, and remember it too well, and still wouldn't wish for a cure for all the world.
"Who will never live independently. Who will never go to a mainstream school. Who will likely never marry or have a job."
You don't know these things, either. Never is a hell of a long time, and we learn and develop on different timelines than non-autistic people do. And who ever said that these things are the benchmarks of a life worth having, anyway? You're so ready to write off any other possible source of satisfaction or happiness in your nephew's life. Maybe stop telling him, and kids like him, that they have nothing worth living for, and see just how much they have worth living for.
I would suggest to the writer that instead of feeling sorry for your nephew, learn to speak his language. Communication is so much more extensive than what NT people think it is. If you truly make an effort to do so, you might understand the implications of everything you just said.
Deletehttp://www.thehoya.com/news/autism-advocates-demonstrate-for-rights-1.2945568#.UKX4gmeGFal
ReplyDeleteThe Autism Rights Watch, another organization run by people on the spectrum, for inclusion of all people on the spectrum, with a global outreach effort, comments on this protest, in the link above, deploring the ongoing fights between ASAN and Autism Speaks.
This organization is willing to collaborate and work with other organizations for the good of all of those on the spectrum, without these barriers of conflicts that only limit the total effort of good that could otherwise be done for all those on the spectrum.
There would be more people on the spectrum willing to join in on the volunteer efforts of ASAN, and perhaps even donate to the the mission of that organization, if this conflict did not create an emotional barrier of division, for some on the spectrum.
It would be encouraging if arguments over semantics could be overcome for the greater good of all those on the spectrum. I for one will encourage people to support the ARW, run by individuals on the spectrum, amplifying this organization's stated intent to collaborate with organizations like Autism Speaks, to work toward an initiative of reaching common goals for the good of all on the spectrum.
I am behind you 100%. I wish I could have been there protesting with you.
ReplyDeleteI am behind you 100%. I wish I could have been there protesting with you. We have events here where local businesses take collections for Autism Speaks. When they ask me, I tell them I'm on the autism spectrum, and I do not support Autism Speaks. They never want to know why.
ReplyDeleteThe real problem isn't the specific opinions expressed as much as the volume of people who hold them. As a protester, you're at an event whose target demographic is the most ignorant and ableist people around. With that in mind, it's no surprise that so many people at the event are apathetic or actively bigoted. Knowing what's coming doesn't always make the experience easier, but at least you can take solace in knowing that in the general public the level of respect is much higher than that measly 5%.
ReplyDeleteMy first protest was in Pasadena, CA in April of 2014. My next will be in Anaheim, CA in December.