Posts tagged autism speaks does not speak for me
1:40 pm - Thu, Oct 20, 2011
55 notes

yellow-eyeballs:

Hell. Yes.

Comments

9:31 pm - Fri, Jun 24, 2011
3 notes

Bad decision - being pro-neurodiversity in a YouTube comments thread

(I knew full well I’d probably get defensive shit. Still disappointed in humanity though.)

Comment thread is from a video of an anti-Autism Speaks protest. I’m moviemonkeys, arguing with layne24.

autism is a spectrum disorder, and those with severe autism are a burden on their family. Having witnessed it first hand, it is very hard on the parents. This doesn’t mean that they don’t love them unconditionally or wouldn’t do anything for them, it just means that it is hard to raise a child with severe autism. To me it seems like a lot of people are confusing aspergers with severe autism. - layne24

@layne24 Neurodiversity isn’t solely for “high-functioning” Autistic people. And “hard on the parents” is never an acceptable excuse for centering abled people in discussions of disability. Kindly educate your damn self. Search for fyeahautismspectrum and ballastexistenz, for a start. - moviemonkeys

@moviemonkeys Are you saying Autism isn’t difficult for parents to cope with? - layne24

@layne24 no. I’m saying that people with disabilities should be centered in the discussion about their disabilities. ever think about what autistic children have to put up with? personally, I was abused by relatives and “friends” and my sister tried to murder me. and when they grow up they’re still stigmatized by people like you. think on it. and read the words of autistic people who speak about autism, like the two keywords I suggested. fyeahautismspectrum.tumblr.com - moviemonkeys

People like me? WTF have I done to stigmatize anyone with Autism? Maybe I and the rest of the world should just go back to not giving a crap about Autism or people with mental handicaps. Just accept that there are people trying to help. You have a lot of misplace anger pal. Sucks about what happened to you, but it wasn’t mine or AS fault, we are the ones trying to help. - layne24

Sorry about what happened to you, but neither Autism Speaks or I did that to you. There are people out there that are helping, whether you want that help is up to you, but there are many families that need it. I have never stigmatized an Autistic person in my life, you need to be careful of your words. - layne24

@layne24 okay I give up. you’re just being willfully ignorant. if you one day acknowledge the very REAL oppression of people with disabilities (including autistic people), great. but you are refusing to right now. I’m gonna block you, and leave you (again!) with three sites: fyeahautismspectrum, ballastexistenz (NOT written by a “high functioning” person), and search for “radical neurodivergence speaking” - moviemonkeys

@layne24 comparing autistic people to car crashes is not “help.” read the words autistic people write about autism. also, fuck your condescension. “misplaced anger” “you need to be careful of your words”

you are a lost cause on this issue. I regret ever engaging with you. I hope no autistic person ever has to put up with your bullshit.

sorry you’re so ignorant, but it’s your choice and I gave you a chance. goodbye! - moviemonkeys

Submitted by Eric, I suppose to document a real example of how defensiveness plays out? I dunno. You don’t have to post this if you don’t want to.

FYI, calling people burdens, propagating the “high/low functioning” dichotomy, and defending Autism Speaks is stigmatizing.

Comments

10:26 pm - Wed, May 25, 2011
12 notes
itssciencefriction:

[Image: The whole thing is on a white background. Taking up approximately the upper 60% of the image is the Autism Speaks logo (a blue puzzle piece with the text “Autism Speaks: It’s time to listen.” below it) saying “exterminate” in the Dalek typeface used in the 1960s comics or whatever. Below that is the text “Do not listen to them. They are bigots. They are lying to you. Autism is not a disease. Allistic brains are no more healthy than autistic brains. The dominant cultural narrative about us is wrong and does not help us at all - it only harms us.” Below that is the text “A message from the actual Autistic people at Fuck Yeah Autism Spectrum. Who you should be listening to. Because it actually affects us and we aren’t talking out of our collective ass.” To the right of that is the infinity symbol with a left-to-right rainbow gradient, and the text “fyeahautismspectrum.tumblr.com / @fyeahautism on Twitter.”]
As I said, it’s not very well-made.
You can get the full version here or here (3000x2361 pixels).

itssciencefriction:

[Image: The whole thing is on a white background. Taking up approximately the upper 60% of the image is the Autism Speaks logo (a blue puzzle piece with the text “Autism Speaks: It’s time to listen.” below it) saying “exterminate” in the Dalek typeface used in the 1960s comics or whatever. Below that is the text “Do not listen to them. They are bigots. They are lying to you. Autism is not a disease. Allistic brains are no more healthy than autistic brains. The dominant cultural narrative about us is wrong and does not help us at all - it only harms us.” Below that is the text “A message from the actual Autistic people at Fuck Yeah Autism Spectrum. Who you should be listening to. Because it actually affects us and we aren’t talking out of our collective ass.” To the right of that is the infinity symbol with a left-to-right rainbow gradient, and the text “fyeahautismspectrum.tumblr.com / @fyeahautism on Twitter.”]

As I said, it’s not very well-made.

You can get the full version here or here (3000x2361 pixels).

(via itssciencefriction4-deactivated)

Comments

12:40 am - Fri, May 20, 2011
5 notes
tal9000:

itssciencefriction:

[Image: a screenshot from Twitter, under the “Who to follow: Suggestions for you” list. The official Autism Speaks account (@autismspeaks).]
Um, how about NO? 

Not only no but “hells no.”

tal9000:

itssciencefriction:

[Image: a screenshot from Twitter, under the “Who to follow: Suggestions for you” list. The official Autism Speaks account (@autismspeaks).]

Um, how about NO? 

Not only no but “hells no.”

Comments

2:07 am - Thu, May 19, 2011
6 notes

codeman38:

nicocoer:

“Rob is a highly respected neuroscientist whose knowledge and experience in drug discovery will help accelerate and target the translational research we fund and ensure that those research dollars will have maximum impact,” Autism Speaks’ Chief Science Officer Geraldine Dawson said of the appointment.

*side eyes so hard*

Clearly Autism Speaks has very different ideas than I do of what constitutes research with maximum impact.

Comments

8:15 pm - Mon, May 9, 2011
20 notes

What the critics of Autism Speaks are and aren’t saying

allies-person:

We aren’t saying that absolutely nothing positive or useful comes out of Autism Speaks’ funding.  That’s a strawman.  The organization funds many, many research projects, and it stands to reason that at least a handful of them may be useful in one way or another.  We are saying that not nearly enough of them are, in terms of helping real autistic people here and now.

We are saying that the organization has some fundamental problems with how it spends its vast amount of money, its (lack of) inclusion of autistic adults as true decision-makers, and its troubling history of “autism awareness” campaigns which demonize and exploit autistic people.

This is an organization which by its own admission spends only 4% of its non-administrative expenses on services for actual autistic people and our families.

Since Autism Speaks doesn’t make publicly available the distribution of its research funds—the majority expense—we have to rely on some degree of inference in ascertaining where the research money is going.  Here are some of the facts: Autism Speaks funds more autism-related research than any other entity.  Overall, 3% of total autism research dollars goes into service research, and less than 1% goes into research about adults.  Since Autism Speaks exerts a significant influence over the general direction of autism research, it is largely (if not entirely) to blame for this dismal state of affairs.  Its control over autism research is becoming (or already has become) monopolistic; I know of autism researchers who no longer even consider applying for other sources of funding.  This means that autism research will continue to be dominated by cause and cure, ignore autistic adults, and be controlled almost entirely by non-autistics.  (No, I don’t think that one token appointment to the Scientific Advisory Board will significantly change the course of things.)

This also has a detrimental effect on autistic researchers, many of whom may be reluctant to work on projects sponsored by Autism Speaks.  I am not speaking hypothetically here; real people I know have run into problems with this.

So to summarize, Autism Speaks is monopolizing both autism discourse and autism research in a lot of disturbing and oppressive ways.  It is also taking out huge amounts of money from autistic people’s—and even the occasional misguided autistic person—without giving a whole lot back in return.

The fact that Autism Speaks may on occasion fund a useful project, like the South Korea prevalence study, doesn’t change any of this.

(via itssciencefriction4-deactivated)

Comments

3:55 pm - Sat, May 7, 2011
58 notes

itssciencefriction:

duyukdv:

sanityscraps:

im-ceo-bitch:

Questioning Autism Speaks

aspergersissues:

This is exactly my reasoning.

FUCK Autism Speaks.

Unpopular opinion coming up.

There are many people with autism who cannot speak—literally. My younger sister, at ten years old, is among them. She’s the perfect victim for anyone who would want to abuse her because she can’t tell anyone if someone hurts her. She also has zero concept of danger and frequently puts herself in harm’s way without realizing it.

My sister is not the only autistic person who acts like that, I’m sure. That’s why I think that if a cure could be created, it should be available. However, forcing it on people? That’s obviously not right. I’m autistic myself, and I wouldn’t want a “cure.” But I certainly would want it for my sister, just so she can at least tell us, “I love you.” There is also genius in everyone, but how will we be able to know what that genius is if someone cannot even express themselves?

Bolding added. This pretty well illustrates the point of how frequently it’s assumed that the wants and needs of family members are more important than the wants and needs of autistic people.

There are many ways a nonverbal person can let you know that they care about you, and express themselves in general—if the people around the nonverbal person are placing value on nonverbal methods of communication, enough to learn to interpret it. Even among people who do speak, nonverbal communication is supposed to make up the majority of what they’re actually getting across.

This is not meant to be personal at all (none of these comments are, actually), but just fits into a theme that crops up a lot: what if the person starts speaking and doesn’t say they love their family members? What if their relatives don’t like what they do have to say verbally? It’s easy to develop odd expectations and project all kinds of things onto someone if you don’t think they’re communicating in meaningful ways already.

Another theme: the vulnerability to abuse one, which frequently verges on victim blaming. The huge problem there is not that a potential victim can’t tell other people about the abuse, but that we are living in a society where disabled people—and children in general—are seen as prey and frequently abused (including in treatment settings, as that page points out). Even when they can talk about it.

From another source:

  • Available international research indicates that disabled children across the range of impairments are at significantly greater risk of all forms of abuse than non-disabled children.
  • From an analysis of over 40,000 children in an American city Sullivan and Knutson (2000) found that disabled children were 3.4 times more likely to be abused or neglected. They were 3.8 times more likely to be neglected; 3.8 times more likely to be physically abused; 3.1 times more likely to be sexually abused and 3.9 more likely to be emotionally abused. Overall, 31% of the total disabled children in this research had been abused.

Insisting that someone cannot communicate in any meaningful way is emotionally abusive, in itself. Organizations such as Autism Speaks are promoting abusive attitudes.

Again, none of these observations are meant to apply to anyone’s personal situation in particular.

Reblogged for duyukdv’s commentary. Also, when someone says “unpopular opinion,” most of the time they actually mean “quite popular and rather problematic opinion.” :|

(via itssciencefriction4-deactivated)

Comments

3:28 pm
2 notes
You’re the equivalent of a charity saying that they are the voice of Queer community but they spend their money on research to cure homosexuality and have ads turning queer folks into tragic idioms, shallow golems to produce pity from uneducated audiences. As well as have all straight and cisgender Directors saying that they speak for the Queer community.

Autism Speaks in a nutshell

(removed the “-ed” from “cisgendered”)

(via itssciencefriction4-deactivated)

Comments

3:27 pm
58 notes

duyukdv:

aspergersissues:

This is exactly my reasoning.

I can’t help but be reminded again of someone I know online who found out within the past couple of years that she has another, less politicized disability. (I wish I could link to one of her posts about the differences between that disability community and the fractured autism-related ones, but it’s locked.) But, adults with that disability and the parents of kids who also have it can get along and share the same organization(s). Parents are interested in finding out what has actually worked for adults who have experience dealing with the same challenges. Nobody’s insisting that the adults are Not Like My Child so should STFU—and the organizations aren’t encouraging this approach.

Yeah, that’s pretty much how things should work, without all the freaky ideology getting in the way. As it is, part of one comment  is unfortunately spot-on:

You’re the equivalent of a charity saying that they are the voice of Queer community but they spend their money on research to cure homosexuality and have ads turning queer folks into tragic idioms, shallow golems to produce pity from uneducated audiences. As well as have all straight and cisgendered Directors saying that they speak for the Queer community. 

(via clatterbane)

Comments

7:34 pm - Thu, Apr 28, 2011
7 notes

Sorry it took so long, but here’s a transcript for that Autism Speaks video from the other day.

[Video: Taped is people using the installation. Over that, a narrator speaks:

"One of the most prominent signs of autism in children is the avoidance of eye contact. Autism Speaks wanted people to truly experience how this must feel for parents. We created an interactive video screen installation featuring a life-sized girl. People were invited to make eye contact with this girl. No matter how people tried, the girl would avoid eye contact every time. Using state-of-the-art Kinect technology, the motion sensor was able to track the person’s head and body movement, causing the girl to look away. Avoiding eye contact could be a sign of autism. Learn all the signs at autismspeaks.org."]

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