Protest Against Autism Speaks

[Spieldamelenium]

O_o

[Spieldamelenium]

Autism speaks is much worse those autism organizations that I can speak genuinely about with any clear certainty, and clear consciences over my words , they do not like autistic people, they do not care for autistic people, in short they harm but more so exploit especially economically, and perpetuate myths and misunderstandings

[moviemonkeys]

NOTHING ABOUT US WITHOUT US! An organization made up of entirely non-autistic people does NOT represent me.

[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.

[moviemonkeys]

@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"

[layne24]

@moviemonkeys I never said that people with disabilites aren't oppressed, but they are not oppressed by myself, as you said without even knowing me, or Autism Speaks. Nice language though, that will get your real far, just curse at someone who doesn't agree with you.

[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!

[layne24]

@moviemonkeys And you should watch your words when you accuse someone of something without even knowing them.

[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.

[moviemonkeys]

@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.

[layne24]

@moviemonkeys Are you saying Autism isn't difficult for parents to cope with?

[moviemonkeys]

@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

[AresCassell]

I'm on the autistic spectrum and I can tell you that "autism speaks" just talks down to autistic people instead of seeing them as capable people who have the potential to be successful in life.

[AdvMineCraftTuts]

Look up Autism Speaks with Lies!! It's a rant some guy did because of me about Autism!! Yay!

[scrubnub11]

Let's call for a boycott of Toys R US as not only do they fund AS but they defend their intentions! Our group just got a letter from their rep that basically dismissed our concerns and defending the boards' large salary.

[Nightwingrox]

Autism Speaks has removed their "I am Autism" video. Guess they got tired of all of us objecting to their campaign against us.

[renaissanceknight]

Either meet with us in a Portland Autism Sumit meeting or leave us alone! I was in an Aspergers group in Portland & never fit in!!! Through Autism Speaks I have found a group that has accepts me for who I really am! I now feel that I am part of a huge loving family! Eaither your group meets with us or you are too scared of hearing the truth!

Watch my video:

You confuse People who do not know anything about Autism! Check out my video:

My Walk Now for Autism Speaks Speech .m2ts

[renaissanceknight]

You Aspergers People are Against the other People on the Autism Spectrum that Can't work, & can't do as well as you! So, why doyou try to speak & control me & people lower on the spectrum like me! You are a Misinformation Reich that is hatefull to ones lower than you! You are like spoiled children! You want what you want and will never meet with us or accept our point of view! I think that Aspergers should be eliminated from the spectrum so you can educate your own message & wants to the Public

[Dolphidood]

I have SEMANTIC PRAGMATIC DISORDER ... BET NOT MANY OF YOU HAVE HEARD ABOUT IT.. BECAUSE AUTISM SPEAKS DON'T SPEAK MUCH. I agree, all though its nice to feel like I belong somewhere for once... We gotta cut societies where different cultures and now ability is divided or otherwise we'll grow apart and fail to function as a whole which means we our ultimate survival is at a huge risk if we don't face the truth.

[hollh003]

Autism speaks doesn't help the autistic kids. They just tell a bunch of lies to the parents. When will people learn that though it is hard for the parents. It's even harder for the child. Fuck autism speaks. We can speak for ourselves.

[pqwilrj]

Only in Portland...

[Nonconformity23]

I don't want them to accept me. I don't think they will accept me or autism either. Have you looked at the world lately? Why would I WANT to be accepted or involved too much in it? It's almost as if they are doing me a favor.

That said, Autism Speaks sure does not speak for me.

[IThinkdoU]

I am 41 and have AS and so does one of my kids. I have a PhD, successful marriage and 3 kids. Autistics are neurocapable. I don't mind the label as long as we don't use it as an excuse. The label helps me to understand my needs and articulate them to others. For example, I need to "retreat and recharge" (to quote Rudy Simone) after social activities. I cannot speak for those with more severe autism. Also, can't we find a cure for the "burdens" of autism without sacrificing our "gifts"?

[Dolphidood]

@IThinkdoU Yes! You've really inspired me! Thanks! That felt like warm water down my neck reassuring me that I can get somewhere in contrast with all that said I probably can't.

[IThinkdoU]

I am 41 and have AS, and so does one of my kids. I have a PhD, successful marriage and 3 kids. Autistics are neuro-CAPABLE. I don't mind the label as long as we don't ever use it as an excuse. The label helps me understand my needs and articulate them to others. Like, I need to "retreat and recharge" (to quote Rudy Simone) after going to social places. I cannot speak for people with more severe autism. Also, can't we have a cure for the "burdens" of autism without giving up our "gifts"?

[aspie182]

The sign one protester held up says it all about Autism Speaks. They want to exclude us from their decision making process and from control over how they portray us to the media, yet they expect us to tow their line no matter what it does to us. Well, Autism Speaks, get used to hearing this: Nothing about us without us!

[Knightmessenger]

Good to see people are protesting Autism Speaks and the controversy is getting some media attention.

I have Aspergers but I don't need to be cured, it's ignorant pricks like Autism Speaks who only see the spectrum as a disease that need to be cured.

totally random but this video was posted 10 years exactly to the day of the final game at Tiger Stadium (home of the Detroit Tigers 1912-1999).

yeah, probably something only I would notice.

[Relyt22]

The whole Jenny McCarthy mentality in Autism Speaks is somewhat of a cult, imo.

[tmventresca]

a 25% increase of public awareness among the general public.... ok.... well... What about the autistic public? If they do not like it and are not included in gen pop then the gen pop are misinformed, arent they?

[AutismSpeaksV1ds]

Well done to the protesters! Get some REAL autism awareness out there!

[paulwady]

Being on the spectrum and having just gone all the way to New York to meet and talk to Autism Speaks rep's, I suggest you all email them and tell them what you all want.

The two people I talked to for 45 minutes clearly wanted to listen to us, but had no history of it. AS is only 4 years old, they are still learning. THEY DONT KNOW.

They are years behind the National Autistic Society of the UK. Simple as that. GO TALK TO THEM. THEY WANT TO LISTEN. Email, do anything.

[SpokaneGirl85]

What do you mean by four years old? AS has been around in the DSM since 1994 and in the USA since 1991. The word was coined in 1981 but the condition was described in 1944 by Hans Asperger.

[paulwady]

Autism Speaks was founded in 2005. That was what I meant by AS.

Autism has surely always been part of human history. There have always been Aspies - we are part of the nature of the human race.

Surely, our argument for acceptance and respect.

[wiscsuzski]

@SpokaneGirl85 I believe he(paulwady) meant AS=Autism Speaks, rather than AS= Asperger Syndrome. Even so, if AS were so interested in the autistic point of view, they'd include you as a rule, not as the exception

[CrawdaddyJoe]

@SpokaneGirl85 I think they're talking about the group, Autism Speaks (AS)

[weareallanemic]

@SpokaneGirl85 The abbreviation "AS" used in this refers to Autism Speaks.

[aspie182]

@paulwady I am sorry to have to tell you this, but like hell they do not know. Temple Grandin, one of the most famous people who openly identifies themselves as being on the spectrum, has met Suzanne Wright in the flesh. Temple attempted to be polite and open, whereas Suzanne was condescending and rude in a manner that would have gotten her killed if she had tried it with black men in South Africa. Autism Speaks is really no better than the Apartheid government.

[RPM1978]

Im Autistic myself and Autism Speaks doesn't speak for me at all.

[CrustyOldRusty]

If you're not offended, you're not autistic. Good job Elesia, with a fair and eloquent summary/defense against the exploitive Goliath.

[SpokaneGirl85]

That's a rather rude comment. Every person is offended by different things and some can careless about the video despite being on the spectrum.

[CrustyOldRusty]

You have a good point. I should clarify that the comment is aimed at those "on the outside" without autism rather than those within. I'm proud of you guys that you did this. Public contact is never easy.

[SpokaneGirl85]

Sorry I misunderstood. I thought it was directed at me on what I said in my info about the Autism Speaks video.

[TedSeeber]

I have Asperger's- and I speak for myself, thank you very much. How much money is raised isn't the issue- it's how they raise the money and what they do with it.

In the case of Autism Speaks, over 50% goes to administrative costs. And the research they're funding isn't exactly what most parents think either- one of the research projects is prenatal testing so that autistics can be aborted. The rest is similar.

I'm not a puzzle. I'm a person. Get a few of me on your board of directors.

[nicocoer]

Good Job ASAN-PDX!

[alaras]

There is NOTHING positive about attempting to portray autism as some magical demonic being. Autism is YOUR CHILDREN! There is no difference between the child you see in front of you and autism. When you say "I want a cure", whether you believe it or not, you are saying "I want a child that looks like mine, but is not my child in any way other than appearances!" You are saying "I hate the child I have." I am autism. I am autistic. I am human. Got a problem with any of those?

[SpokaneGirl85]

I have nothing against autism treatment. It was the video lot of us were upset by and made us sound like horrible people and sound like monsters. Lot of us don't want people to be afraid of us and assume the worst. I respect people who want treatment for their kids so they can live normal lives as possible when they are adults.

[eclath]

I appreciate being respected as someone who wants treatment for our families so they can live normal lives. But please try to remember that by far the majority of "US" families I have spoken to feel the video targets the nebulous causes & effects of of ASDs, not the people on the Spectrum. Those I have spoken to all speak highly of the second half of the PSA, which exemplifies the hope for Autism that is possible when we all come together. And we must come together to truly make a difference.

[codeman38]

"when we all come together"

...except for, y'know, the autistic people themselves.

[TedSeeber]

How can we come together, when those of us who are successful adults keep getting pushed away? We ARE autism- and we have the solutions you should really be looking for. We won those solutions in the battlefields of the playgrounds and school buses, in the classroom and the board room, often at high personal cost. We offer those solutions to any who will listen- but Autism Speaks won't listen.

[shamiraash30]

Autism Speaks' supporters spoke highly of the second half of the PSA? What about the first half? ASAN's protest was against Autism Speaks only, and NOT against any Portlanders who participated in the walk. ASAN has utmost respect for the children, families, and friends who participated in the Autism Speaks' Walk. Autism Speaks is misinforming and exploiting the very families they claim to help--even in Portland. Take a look at their 2008 990 Tax Form. Autistic people deserve civility too.

[eclath]

I am proud to say that Portland's 1st Walk Now for Autism, made possible by dozens of local volunteers & Autism Speaks, brought a sense of community & hope to a diverse group of more than 1000 participants. Among the walkers were a non verbal 9 year old girl and her service dog, a 45 year old Autistic man who, with the support of his family, was able to raise more than $1000 for the walk, and, one of our speakers today, an accomplished 34 year old married professional & author with Aspergers.

[TedSeeber]

I'm glad to hear you had at least one speaker with Asperger's, with the way we've been excluded from the national board. Too bad 50% of the money raised will go to pay the salaries of the people who put forth this rather discouraging advertisement- and another percentage will go to a eugenics group looking for a way to test prenatally for autism, so that autistics can be aborted rather than cheered!

[milograamans]

great comments--

from another asperger

[ssjbriguy]

@TedSeeber correction, 96 % will go to the salaries. In publicly available financial figures you can see that only 4 % of money raised by/for Autism Speaks actually goes back into those communities for education/services.

[smishalyn]

In the 70s and 80s, there was a PSA for the Jerry Lewis Labor Day Telethon, which depicted an older man in a wheelchair, stating "I am muscular distrophy and I hate children". But look at how much that charity continues to raise! Perhaps if the protestors would view the ad for what it represents- a united front against autism- they would actually save their energy and put it to good use; perhaps to help find a cure or contacting their congressmen to get insurance reform passed.

[nicocoer]

And a lot of the Children featured in Jerry Lewis's ads have gone on to protest AGAINST Jerry's Pity campaigns. Try Googling about what the current Disability movement thinks of Jerry, including "thetroublewithjerry" website. Or try looking at the film "The Kids Are Alright".

[Chasmatazz]

It's funny how pleas for a "united front against autism" really mean "do what non-autistics want." How united is it if you don't even listen to the people you claim to be speaking for?

[smishalyn]

As a participant in the Walk Now for Autism in Portland, and the mother of a son with autism, I am appalled that the only coverage that this event received was negative. We've raised over $47,000 for autism research and family services, and all the news channels were willing to focus on were the protestors (I believe I saw 9 total) that felt that the "I Am Autism" PSA was negative. If they had bothered to watch the rest of it, they would've seen the positive message.

[nicocoer]

We did, and we still thought it was negative. What happens when your songrows up? Do you still want a world in which he is demonized, called "Violent" and "destructive", have the people he dates or becomes friends with have their parents fear he'll destroy their lives? Or do you want a world that is proud of what he's overcome in order to be a part of the world?