How do you guys feel about Autism Speaks now?

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Okay so I was gonna post this at the Random Discussion forum or the Members Only Discussion forum but I decided to post this here, especially since this concerns a big organization like Autism Speaks.

Anyway, the title of this topic speaks for itself. While I'm almost 100% certain that we're all well-aware about Autism Speaks' past misdeeds, recent episodes of Wrong Planet owner Alex Plank's web series, Autism Talk TV, has started to give me the impression that Autism Speaks has changed for the better, especially since Autism Speaks sponsors Autism Talk TV. So my question to you guys are do you guys think that Autism Speaks can be trusted or do you guys believe they just posing as angels?

Oh and Alex Plank or whoever like Jack or Kirsten or John Scott Holman, if you're reading this, can you also let us know if Autism Speaks has really changed for the better or not? Thanks guys and, umm, girl.

I don't really care. I haven't seen any of their adds or any movies they have made.

They can't change and remain in business.

My first impression of them was that they wanted to get rid of us, and they saw us as useless eaters. First impressions last forever.

I don't think so. They still remain the bigots and posers that they really are. And I didn't really appreciate Plank having to partner with them-that-should-not-be-named for Autism Talk TV. That alone made me think Plank is only after the money, and that the bigots are using Plank for their gain.

One part of me thinks, if they've made some substantial changes, great. But that I think I'd like to see hard numbers concerning how contributions made to the group are used before I even consider any revision of my rather low opinion of the organization. I mean, if they're still paying their officers and board preposterous sums of money, still spending far more on research on genetic tests to identify some sort of autism gene than on community outreach and education, and that fundraising and administrative costs as a whole are unreasonable relative to anything at all related to their theoretical mission, then, no, they'll be no change of opinion on my part.

Another, far more cynical, part of me thinks that the whole organization is simply beyond redemption and that they should yank the plug. IOW, their past behavior has simply put them beyond redemption, and that any positive changes they make are done reluctantly and then simply to shut their critics up. I can't speak to the webcast specifically, since I've not watched any, so I'll not say anything on that score, at least at present.

i dont feel anything at all about them one way or another.nor do it anything at all for the asan one way or another.i dont feel much about anything one way or another.either becaus i feel nothing or i feel so much i have to disassosiate to get by,i dont know.stoped caring about anything a long time ago

Agreed.

I have no respect for them at all, and I don't see them changing. It's all about the money, and always will be.

I'm not exactly on the bandwagon for a "cure" right now, so no.

I see the good they're doing with Autistic children and the potential good they can continue to do as the Autistic population ages.

I don't measure Autism Speaks by whether they want to cure Autism or NOT. For parents who want a cure, god bless them, i hope they find one. For those parents who do not want a cure IF one is made available simply refuse IT. Why try to limit other peoples choices ?

I have one main concern with regards to Autism: The Quality of Life of ALL Autistic People Through the Life Span.

IF Autism Speaks can improve THAT than everything else is petty irrelevant background noise to me.

TheSunAlsoRises

Last edited by TheSunAlsoRises on 08 Dec 2011, 10:56 am, edited 1 time in total.

Here's what I think of them:

1. They are spending their resources on finding a way to eradicate autism from the human genome and destroy autistics rather than support them.
2. None of their board members are on the spectrum.
3. Their influence is similar to corporations, and their notoriety to God Hates Fags.
4. Their attempts to re-brand themselves from a Nazi/Aktion-T4 organization is quite pathetic at best.
5. They suck up money from gullible parents of autistics and other organizations, and use said money for their own gain.

Quite frankly, if I see their demise or downfall, I would celebrate triumphantly and exuberantly.

Shouldn't it be the own person's decision? I mean, can parents decide it for their children? What if they - the children - didn't want it? What if they blamed their parents for the rest of their lives for having done this to them?

Well, I'm really unaware about Autism Speaks. I don't know enough about them to give my opinion. But I do disagree with this "cure" thing. There's nothing to be cured. And if they deffend it, even if only timidly, I'm against them.

I think some Autistics need something to rally against and Autism Speaks has become "the Boogey Man". IF Autism Speaks did NOT exist the main focus of discontentment would fall on society, parents, or researchers.

1) Autism Speaks and other Autism organizations are scrambling just to simply understand the etiology of Autism so human genome, environmental, and sociological research etc are being done in hopes of finding something; anything to shed light on the mystery of Autism.

2) Autistics represent 1 % (this includes men, women, and children) of the US population. So, it does NOT surprise me THAT someone who publicly recognizes themselves as being on the spectrum is NOT on every board. Yet, I do believe John Elder Robson is on their Scientific Advisory Board. It is a start.

3) They can be seen technically as a not-profit corporation. Is having the influence of a corporation necessarily a bad thing ? Autism Speaks allegedly has the notoriety of "God Hates Fags" with which group of people? Whom?

4)Like all organizations and groups, in-order to meet the needs of the people they serve and expand to include others, change is imperative. Personally, anytime an organization becomes more inclusive in regards to those their trying to serve; i see it as being a positive step in the right direction.

5) There is a detailed discussion(on this website) concerning where and how Autism Speaks money is allocated and no one has been able to step forward on that thread and prove misappropriations.

Autism Speaks is going to be here for a very very very long time whether you like it or NOT.

TheSunAlsoRises

Last edited by TheSunAlsoRises on 08 Dec 2011, 12:13 pm, edited 1 time in total.

Everyone lives with the decisions that their parents make in a child/parent relationship. For any major decision in life, I can question whether the child wanted it versus whether the parent wanted it. Will or will not the child be resentful ? We live with those decisions, everyday.

TheSunAlsoRises

Yes, we do. But being "cured" of something that isn't even a disease is another matter. This is something like a boy's parents wanting to "cure" his skin or hair colour, or even his shyness. In this case, they want to "cure" what he is.

A condition does not have to be classified as a disease to opt for a cure.

I look at like this: How can I infringe upon the rights of a parent who has an Autistic child that has physical and mental developmental handicaps so severe that they are going to need 24 hr care for the rest of their lives ? I don't have the financial resources to help such parents and i cant promise that their child will be taken care of after I'm gone. It would be disingenuous to look at this particular situation and say it was me. It's NOT. As a consequence, i simply believe in choice.

I understand and respect your position.

TheSunAlsoRises