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| Autism Speaks; Don't speak for us. | |
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| Tweet Topic Started: Jul 25 2008, 01:40 AM (132 Views) | |
| tmad40blue | Jul 25 2008, 01:40 AM Post #1 |
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WARNING: Longthread is looooooooooooong. Imagine, if you will, that an organization existed by the name of "Womanhood Speaks," which, on the surface, appeared to be in support of women's rights. Now imagine that the governing body of this organization only included members of the male gender, with not one female represented in its ranks. Imagine that its actual aim was to create a registry of all females and force them to become more masculine, completely disregarding the fact that a majority of females were perfectly content with their womanhood and even found it to be advantageous. Imagine that members of its leadership appeared on popular TV programs talking about the epidemic of womanhood and how it needed to be eradicated. Doesn't sound too appealing, does it? This hypothetical situation may seem utterly absurd, but for one segment of the population-- albeit a much smaller subset than that with two X chromosomes-- it isn't all too far from reality. I'm speaking of autistics, and more specifically, of the organization known as "Autism Speaks." Such a deceptive name. After all, a fair number of autistics are unable to speak; the name Autism Speaks suggests an organization that is willing to speak on their part for greater acceptance and improved services that might enable them to more actively participate in the world while still being able to benefit from what strengths autism might provide. And autism does have its associated strengths: a dogged persistence; an ability to look at matters objectively and logically; an ability to focus on details that others might miss entirely. If we get rid of the "bad" aspects of autism, we're also likely to get rid of these traits that, to be honest, can be extremely advantageous in certain lines of work. In truth, however, Autism Speaks is not very amiable to us autistics. First off, despite the group's ostensible aim of speaking for autism, there is not one single autistic person on its board of directors, or otherwise represented within the ranks of the organization. There are plenty of autistics who are fully able to advocate for themselves, who are fully able to express what sort of support they would benefit from, and would have benefited from as children, much like myself. Otherwise, why would I be writing this? However, Autism Speaks wants very little to do with people like me. Secondly, and more importantly, the public face of the organization belies its true intentions. Perhaps most notably, Autism Speaks recently allied with another organization that's also somewhat infamous in autism circles, an organization by the rather presumptuous name of "Cure Autism Now." (Just for clarification's sake, I should point out once again that, though I protest cures for autism, I am not against seeking services and support to aid autistics, or even to ease the lives of parents of autistics. This seems to be a very common misunderstanding.) Indeed, I'd go so far as to say that some significant members of Autism Speaks' leadership simply don't understand autistics. Take, for instance, the case of Alison Tepper Singer, the vice president of communications and awareness for Autism Speaks, who was also prominently featured in "Autism Every Day," a fundraising film made by her organization. In one rather famous-- and controversial-- scene, Singer describes a moment in which she was so exasperated, she had seriously contemplated driving off a bridge with her autistic daughter. A pretty callous thing for any parent to say, but particularly so in front of the child being described, as was precisely the case in this video. Should I mention that the child in question is clearly trying to show affection toward her mother, and being shrugged off, mere seconds before this statement is made? For those who wish to watch the video in question and see the evidence for themselves, I'm not going to give that video any greater Google ranking by directly linking to it, but a link can be found in Wikipedia's article on the film, which also discusses some of the criticism thereof. And if you think this sort of rhetoric has no effect, tell that to the family of Katie McCarron, a three-year-old autistic child from Illinois who was suffocated to death by her mother slightly over a year ago. It may be mere coincidence, but it's worth noting that this murder occurred just four days after the initial release of "Autism Every Day," as pointed out by Kristina Chew of Autism Vox. Chew also quotes Katie's grandfather Mike, who has no kind words for so-called "advocates" of the Autism Speaks sort. There's not even the excuse of McCarron's mother having been an overburdened parent in the vein of Singer; as the Coalition for Citizens with Disabilities in Illinois mentions, Katie had not lived with her mother for some 20 months before the incident. Yet that was the primary spin given to the story by the media: an expression of sympathy for the mother, with almost no attention given to the thoughts of those who were Katie's primary caregivers. Yet Autism Speaks has major clout. They've allied with popular children's stores such as Toys R Us and Build-a-Bear Workshop, accepting donations from shoppers there (while not making it quite clear what those donations might be used for). Representatives have appeared on popular TV talk shows such as "Oprah", "The View", and "Larry King Live", presenting a very one-sided view of what life with autism entails-- while barely allowing critics the chance to present an alternate viewpoint. Oh, and one of their biggest promoters by far was Don Imus. Draw from that whatever conclusions you wish; I'm not touching that one. About 2 months ago in Atlanta, GA, the combined force of Autism Speaks and Cure Autism Now sponsored a so-called "walk for autism" that gained a fair amount of local and regional publicity. (An interesting definition of "for," to be sure, when one of the organizations involved is clearly against autism judging from its name alone.) So that is why I'm posting this. It's to get the word out from the other side of the autism debate, the one that doesn't get all the media attention. It's in the hope that someone, anyone, who participated in the walk might start to have second thoughts about it. And most of all, it is with the hope that others like myself can get the support we need to live in a sometimes frustrating society, not a cure that is forced on us without our acceptance. Autism Speaks surely doesn't speak for me - nor do they speak for numerous other autistics and advocates, for that matter. |
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| Athanar | Jul 25 2008, 10:46 AM Post #2 |
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Thank you. As someone with another mental disorder linked to autism, I know what you're talking about. I didn't know about the organization, but I know that I wouldn't want what I have cured, and the group sounds like they're trying to make autism look bad, like there's no benefits... There's a lot of benefits, even if there's also some less favorable symptoms... If Autism Speaks wants to help autistic people, they should get the voices of people who actually have it. |
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| tmad40blue | Jul 25 2008, 11:12 AM Post #3 |
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Another thing that I forgot to mention - Look at any TV spot or video that Autism Speaks has produced. The only things they care to mention are how frequent autism cases occur and how horrible autism is. They only show the worst-scenario cases - children that can't speak and will have a meltdown at anything, and say that this is what all autism is like and that it must be stopped NOW. |
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| Athanar | Jul 25 2008, 03:01 PM Post #4 |
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Which is very wrong. I remember something about someone saying that. This must be them. It's wrong and they need to be stopped. I'm in support of trying to find a cure for those who are in those situations and want to be cured, but not anything mandatory, and I'd never take it myself. People don't need to suffer with the worst-case scenario stuff, but there's a lot of benefits they "forget" to mention. |
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| tmad40blue | Jul 25 2008, 04:50 PM Post #5 |
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Boy, I must be bored. I'm writing too much. XD There are a lot of misconceptions about autism floating around. Consequently, many people with autism remain undiagnosed, countless autistics are misunderstood, and millions of dollars are donated to nonprofits who don't speak for those with autism. This is a troubling time for people with autism (and I speak as one of them) because the media focuses a considerably large percentage of their autism coverage on stories told by those who do not even have the condition. I've put together a list of only ten misconceptions that have been born out of the lack of an autistic voice in the media. 10. Autism is an epidemic. Organizations like Autism Speaks and Cure Autism Now are quick to label autism an epidemic, despite the fact that scientists have found the opposite to be true. For instance, Dr. Roy Grinker, an anthropologist at GWU, whose research was ironically funded by Autism Speaks (needless to say, they're not too happy), recently published Unstrange Minds, a book that debunks the idea of an "Autism Epidemic." And he's not the only scientist who has problems with the those who label it an epidemic. 9. Most autistics are "low functioning." Due to the negative connotations autism gets from the term "low functioning," the bigger nonprofits like to focus on low functioning autistics because people are more likely to donate to help severely affected people (these same organizations use the statistic of 1 in 150 but they imply that 1 in 150 people are low functioning). However, the most recent studies show that a little less than half of autistics are low functioning. A lot of autism experts point out that Asperger's is under-diagnosed, which indicates there's an even lower percentage of people who would qualify as "low functioning." 8. Autism can be treated by ________ (insert unapproved treatment here). This is one of the most troubling fallacies because it's usually spread around by people who try to take advantage of uneducated parents who will do anything to help their kids. Many of these self proclaimed experts cheat families out of small fortunes and conduct dangerous and highly illegal "treatments" on autistic children with absolutely no improvement in their condition. Throughout history, snake oil opportunists have popped up when scientists couldn't find a real cure, and this time its no different. 7. Autism is caused by mercury. This myth is popular among the same snake oil opportunists I just mentioned. Because mercury is a real poison that exists in everything from vaccines to thermometers, it's easy to convince parents that it causes problems. While high doses of mercury are very dangerous, mercury doesn't cause autism at any dose. In addition, the amount of mercury in vaccines is not high enough to have any measurable effect. Studies have consistently shown that there is no link between autism and vaccines. This myth of a correlation is especially troubling when real outbreaks have been caused by parents' fear to vaccinate their children. 6. Nonverbal autistics are severely mentally impaired. Becase they have trouble communicating with the rest of the world, you may think they're somehow less intelligent. The opposite is true. Low functioning autistics have impaired communications skills, but they are just as smart as your average Joe and many are even smarter. 5. Autistics can't be geniuses. Actually, there are many historical geniuses who are thought to have had autism (Albert Einstein and Thomas Jefferson, for example). However, I think it's foolish to use them as evidence when I can merely point to currently living people like Nobel Prize winning economist Vernon Smith and actor Dan Ackroyd who have made public statements about being diagnosed with autism. 4. We have a pretty good understanding of autism. Scientists don't know very much about the brain, much less Autism. Every day, researchers are learning new things about autism. Regardless, we still have a lot more research to do before we can begin to understand this puzzle. 3. Autistics want to be cured. Most autistics, in fact, do not want to be cured because they've already accepted autism as part of their personality, identity, and lifestyle. You may not understand why anyone would want to be diagnosed with a psychiatric condition, but even homosexuality was listed in the DSM as being a disorder at one point in time. 2. People with autism are alike. While you may be quick to use autism to refer to someone's identity, autistics differ from each other just as much as those without the condition differ from each other. Most people think that all autistics are exactly alike and should be treated like what they see on TV. This is highly untrue. Autistics come in all shapes, sizes, professions, religions, political affiliations, and nationalities. 1. Autistics are represented by nonprofits like Autism Speaks and Cure Autism Now; donating to these causes helps people with autism. Actually, most autistics feel that these nonprofits are doing a disservice to those living with autism by running campaigns that dehumanize people with the condition and painting an inaccurate picture of what autism is like. For example, Autism Speaks, the largest autism organization in terms of financial capital, has no autistic employees and no board members with the condition. They disallow autistic individuals from speaking at their conferences with the rationale that "it wouldn't be appropriate." While a lot of the research they fund may be conducted by good scientists who are unaware of the organization's political slant, Autism Speaks' end-game is establishing prenatal screening. Any good that comes from this research is consequently undermined by the negative messages they send. There are autistic-run organizations, such as Wrong Planet (http://www.wrongplanet.net) and the Autistic Self Advocacy Network (http://www.autisticadvocacy.org/), that are trying to give autistics more voice in the media (if we even have any now). ASAN, for example, recently succeeded in a media campaign criticizing the New York University Child Study Center. The center apologized for and rescinded an advertisement campaign (the Ransom Notes Campaign) that painted autism and Asperger's syndrome in an unrealistically negative light. |
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| Athanar | Jul 25 2008, 06:23 PM Post #6 |
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I know you're saying this stuff isn't true. I'm just adding what I want to in each one. 10. Autism is an epidemic. *looks up "epidemic"* ... Oh. Okay. It's not. XD 9. Most autistics are "low functioning." Not true! I've met quite a few people with autism or related disorders, and my mom has too, and almost every one functions perfectly fine aside from a few minor quirks! 8. Autism can be treated by ________ (insert unapproved treatment here). O_O Since when has ANY cure been found?! Get educated, people! 7. Autism is caused by mercury. >_< No. Just... no. Mercury is toxic, but it doesn't cause mental disorders. 6. Nonverbal autistics are severely mentally impaired. You're right, Tmad. The communication skills are blocked, but other skills aren't. Give the person a chance to express him/herself in a way that he/she is able to, and he/she will likely prove it. 5. Autistics can't be geniuses. o_O I know that every IQ test I've taken (they've been either at-home or online, but I didn't cheat in any way in the at-home and the online seemed like the same type of thing) has said I'm a genius. Also, I've been in accelerated programs since the second grade, and was homeschooled in the first grade by my parents (and moved a year ahead in the process) BECAUSE I needed it. (Not trying to brag, just trying to make a point.) 4. We have a pretty good understanding of autism. There's a lot unknown about it, yeah. While we know some things about it, symptoms, ways of coping, even some things that can cause it (like my Tourette's Syndrome likely being caused by an underdeveloped part of my brain causing me to have to find other ways around problems and affecting my thought processes that way) but they DON'T have a good understanding. There's a lot to be discovered, still. 3. Autistics want to be cured. Actually, somewhat true. I've found that some people with autism don't want to have it because it interferes with their lives too much, but a lot have accepted it and some have even taken advantage of it. (I have in some ways myself.) 2. People with autism are alike. Um... Look at us. Are we alike? 1. Autistics are represented by nonprofits like Autism Speaks and Cure Autism Now; donating to these causes helps people with autism. I'm not represented by them. I represent myself when I can, really, letting people know what they want to about it if I see it as appropriate (such as when a person just wants information) and I'm willing to let some organizations represent me with all of the others with the autism-related conditions if they're a good organization. Y'know, you brought up some very good points. I hope my additional commentary has helped. |
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9:13 AM Jul 11