What is the truth about Autism Speaks??

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Helldog Clinton supports Autism Speaks.

You can stop flaming me, now.

I was just as confused as you are, but now it all makes sense. Anyone or anything associated with Autism Speaks will be hated. Ugh. I think hating Autism Speaks is a full-time, life-time job for some people.

Have you seen the crap they put out?

Autism Speaks doesn't actually care about autistics, regardless of what you were led to believe.

The only crap I've seen is people crapping on them like they have nothing better to do with their own lives.



Nobody "leads" me to believe anything and seems a few here feel you spend a lot of time over there for you not to like the organization so much. Why is that?

The truth about Autism Speaks, is that I'm a holier than though, curbie hating Aspie, who doesn't agree with the stuff that they come out with. Now you all know the truth, about me. I'd rather be like Sid, than be cured, because I am like him. :O)

Why would we hate them... I personally don't hate them. I personally hate that they want to eradicate me, while pretending to be speaking for me.

Exactly. NewportBeachDude, do you really find it surprising that the message of Autism Speaks isn't too popular here when they unapologetically want to "cure" us and wish that no family would have to live with us, generally painting a negative picture of Autism/Aspergers when the last thing we need is bad PR? I don't like Autism Speaks because of their ideology, not because we 'have nothing better to do with our own lives'.

Sure there needs to be more support and awareness for people with Autism and Aspergers, but Autism Speaks seems to have too much "parents", "cure", "victim", "families", "suffering", "stricken", "transform", "heartbreak" and "health crisis" on their minds and not enough 'respect', 'autistics', 'people', 'pride', 'support', 'achievement' and 'tolerance'.

Amen to that! Can I get a hallelujah brother!

Farsight, Cockney and Peppertree, it's clear you all hate Autism Speaks. Brothers! Hallelujah! But, why is so much time spent on hating and not supporting the organizations that you feel speak for you? Since I joined this board there have been countless hate threads on Autism Speaks every week. I have yet to see one, one, one, one, one, one thread touting the glories of the Asperger organizations stateside that support your mandates and what you all stand for which is to be left alone and not seen as disabled people. What perplexes me is that there is never any talk about the organizations you do like and the ones that you stand by. That's the point I'm making. But, you've got all the time in the world to go after others that are primarily for Autism, not Aspergers anyway.

And, what's even crazier, is that you hate anyone and anything affiliated with them. Barnes & Noble. Toys 'R Us. Hey, I heard several fastfood restaurants are considering putting their puzzle piece on their takeout bags. Let's all stop eating fastfood in hatred of them. As a matter of fact, let's all stop eating altogether. There's an idea. How about a hunger strike?

Um... it's "Pepperfire".



I guess you missed my post on the other thread asking for the names of groups that do speak for Aspies?



Um, er, I'm afraid you've gone and lumped a group of people who may or may not all carry that same beliefs. Whereas some of our thoughts are similar and some of our ideas are in agreement, I certainly do not stand for being left alone and not seen as "disabled". Were I to wake up tomorrow morning in need of care and attention, my "disability" would most certainly get the funding I required. Although I am quite able, many of my colleagues are "disabled". What I stand for is making it quite clear that the "Voice of Autism" is actually the "Voice of the families of Autistics"; I could care less that AS speaks, I care that their name suggests that they speak for Autistics, and they don't. That's not something to "hate" them for, but it is something to speak out about; especially since I am autistic, but not portrayed in anyway in their videos; as if no autistics function as highly as I do. There are currently, nor have there ever been, to my knowledge, any actual Autistics speaking from the dais of Autism Speaks. I am quite certain that you overexaggerate my feelings for Autism speaks.



If it helps. I put my money where my mouth is and I support Midnight in Chicago, both personally and professionally. Your point seems to be that you've taken any conversation about AS and given it an extreme of emotion that doesn't exist... not for me anyway. They certainly have a purpose and as can be seen by simply reading this thread, they have helped some people. They've done nothing for me personally and they have never shown any high functioning autistics, as if we don't exist and many of us are fine upstanding people, ergo, they don't speak for me. I regret that AS does two things that I take to task, but I do not in any way hate them for it. 1. They do not show the high functioning face of autism and 2. they take funds that might otherwise be directed towards respecting, supporting and advancing autistics and direct it towards "curing" us through eugenics, etc.

I have no intention of boycotting Barnes and Noble, they have done nothing wrong in supporting AS, although, given the opportunity, I might consider attending one of AS' reading sessions in order to have MY voice heard. I have no intention of boycotting Toys R Us or anyone esle for that matter. In fact, I have some very close friends who financially support AS, but that is them. I have made it quite clear that I cannot support this group financially or even morally, because I do not believe in eugenics or eradication of autism.

I have also stated quite clearly that I support Midnight in Chicago. I am in the unfortunate position of being unaware of all the different groups out there and whether or not those groups support AS. If they do, then they will not be on my "list" of groups to support. Fwiw, until I find others (and I'm researching this, as is my wont), the only one that I personally have found so far is MIC.

Now do not take my words to speak for anyone else. I might agree with a certain statement, but it is quite possible, highly probable even that I do not agree with ALL of their ideas.

I don't know, as that doesn't apply to me. Hate is not my priority.



That is a shame. I guess you missed my other post about my college. Seriously, maybe I'll post a dedicated thread with more details on the success of my college's Autism department/area. I'm not sure about posting something so local, but it is one of the first areas of its type in the country (UK).



Well I might question how much those companies know about Autism and Autism Speaks, but I certainly don't hate them for it. That kind of 'hate everybody connected' attitude is reserved for violent animal rights groups and the like.

It seems that you are a little more farsighted than you have been credited for, hmmm? Whatcha want to bet that Cockney feels similarly more farsighted???

I did not follow your grammar here, but I assume you have not read their site. I had not, for some time, so I thought I'd have a look. I found the image on their front page rather unsettling, which I'm sure is what is intended.

Their description of autism seemed only slightly slanted.

Delving down, I encountered their "facts" on autism (a term they sometimes use to mean LFA and sometimes to cover the entire spectrum - whichever makes the most impact.)

From Facts about Autism:



Again, I have trouble with your meaning. I know that some members of WP also contributed to the Autism Speaks website some time ago. I thought most got banned, for not toeing the Autism Speaks line. To my knowledge, no one has been banned from WP for such an offence. You are still here, and welcome.

Not true. Nobody from here got banned, that I know of.

I'm still there, and a couple others post, though less frequently than I do. The rest just left.

There are several problems I've noticed with Autism Speaks, which leads me to conclude they do more harm than good. It's funny, because I knew nothing about the organization before posting on Aspie websites, and I wondered for a long time if the Aspie community was taking it the wrong way, but I have posted on their forum and read around and gotten comfortable that they promote an agenda I do not wish to follow.

First, since they started promoting awareness, parents of young children have become paranoid, and I mean PARANOID, about discovering their child has autism. While the world my son was diagnosed in was painfully ignorant of what autism meant, I do not think that this is an improvement. Awareness is a good thing, but fear is not. As Alex suggested in his speech, Autism Speaks is acheiving success by feeding on fear. This is very shortsighted and negative. Whatever good they originally hoped to do, and I suspect that they started with their hearts in the right place, is being wiped out by the negative undercurrents that are being spread.

Second, power corrupts, and they are acheiving too much power. I've seen it far too many times, where an intent to do good ends up gobbled up in the "competition" of the marketplace. They seem more intent on "winning" than considering all the ways positive change could be made, at this point. That does not mean good intent was never there, but it has fallen by the wayside. When they start blaming a parody site for lost donations, it becomes clear that they have lost the ability to take a serious look at themselves with the intent to weed out faults and improve.

I do not blame vendors like Toys R Us for getting on their bandwagon. These are companies that don't understand all the issues involved, and simply hope to help in the area of autism. They are going to go with the apparent "winner." That is how large corporations operate. But I've seen companies take very seriously intelligent and thoughtful letters from Aspies about why a different organization would be a better choice for their support. Autism Speaks is run by powerful and well connected people. It is visisble and easy for someone wanting to help with Autism to join up with. The answer is education, not anger. Yes, I get frustrated when I see this behomoth win and acheive unworthy growth, but unless I am willing to take the actions to check it that I know will work, I can't pass around blame.

I think education among the Aspie community about the negatives of this organization is great, and all this talk is a part of that. I would never have known but for the talk on an Aspie board. But, ultimately, the talk isn't going to make the change. NewportbeachGuy is right, you have to put your dollars where your mouth is, and support the competition. Or get to work on polite and thoughtful letters to Autism Speak's community supporters, and educate them. Long run, complaining is only useful to the extend it ends up spurring change.