Should WrongPlanet sever all ties with Autism Speaks?

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Autism Speaks is a scam. A terrible scam.

I hope they are just a scam and their motives are strictly financial. My opinion of their motives is worse than that. I expressed this view of their motivations last fall. A lot of people did not seem to understand what I was trying to say and those that did were highly critical. It seemed like a waste of time for me to go on so I dropped the matter and have been afraid to raise it again since that time.

The founders grandson is autistic. I do believe they love him. I don?t believe they are using him for a financial scam. Bob Wright was the former chairman of NBC Universal. That is why they are so difficult to oppose. Wright is ?one of the boys?, the media and politicians are not going to investigate him and are glad to help one of their own. He is not hard up for money and knows of many legit ways to get it.

Most parents or grandparents will do anything to help their child. At times people whose child they think is in real trouble won?t think things through and won?t care who they hurt in the process of ?protecting? them. When I looked at this commercial (major trigger warnings) http://www.youtube.com/watch?v=8mycxSJ3-_Q it was clear to me that they think some sort entity has grabbed their grandson and is ruining marriages etc. To me from the tone of voice of the announcer to the description of this entity lurking, waiting for the right time to strike, enjoying inflicting pain, ruining marriages etc. was meant to imply Autism as Satan. The mention of ?warriors? at the end was meant to imply ?Onward Christian Soldiers?. The word Satan or Satanic was not literally used because Autism Speaks does want to scare non Christians away. Religious Christians would get the non-literal message. Their exclusionary policies, the language used, the extreme intensity of their supporters is cult like.

Last edited by ASPartOfMe on 18 Sep 2014, 11:17 am, edited 1 time in total.

I really hope there is a special place in Hell reserved for Bob and Suzanne Wright. U know this isn't a Christian thing to say, but I don't care because they have convinced so many that autism is a disease, they have created a culture of hate. Because of them, autistic children are being killed by their parents. Because of them, the Judge Rotenberg Center is allowed to torture autistics. Because of them, "doctors" like Jim Humble are peddling a "cure" that's really forcing your children to drink bleach because they believe autism is a parasite. Burn in Hell, and may God forgive me for saying that.

Hmmm, perhaps I got it all wrong then and WP has nothing to do with Autism Speaks. I can't find any solid proof either way though!

Just to clarify a couple things from my experience with both groups:

There is no current connection between Wrong Planet and Autism Speaks that I know of

Whatever you think of it, Autism Speaks is not a scam. It's an organization founded by two wealthy senior citizens who have a autistic grandson who is very disabled. They appear to hold a disease model of autism, and they seem committed to curing what they see is a scourge.

That seems to be the founder's view, as best I can tell. It has put them at odds with many autistic people, and many families, but they have found wide support among families whose children are severely disabled by autism. Few of those families participate here so it's not apparent on WP, but most of the AS revenue comes from individual donations, and those would not keep rolling in if a fairly large group of people did not subscribe to their viewpoint.

The confusing thing is that there are many progressive thinkers in the AS organization, and many of those have views aligned with folks here. But they don't make the decisions on where to spend the money AS raises, and that is the problem Too much of their money goes to what might be called "cure or prevention" related, and too little to helping our community actually build better lives.

But that's just my opinion. The supporters - and there are many, given the donation stream - see it differently

Thank you for your explanations about Autism Speaks and Wrong Planet, Mr. Robison. They are more descriptive of the internal world at AS than I have read here at WP or elsewhere.

Strangely, the Charity Navigator profile about AS http://www.charitynavigator.org/index.c ... rgid=12720 shows that while its overall financial integrity is good (though lowest among similar charities), it lacks in the areas of Records Retention and Destruction Policy and its Donor Privacy Policy which requires donors to protect their privacy only by opting out. More importantly, in its financial report of fiscal year 2012, AS experienced a deficit of $5.4 million leaving it with a net balance of $5.8 million. Without extraordinary donations to make up the difference (which aren't indicated at Charity Navigator), the unexpected deficit suggests that AS's Fundraising Efficiency of $0.26 would have yielded just $22.3 million in FY2013 instead of the expected $43.1 million (which itself would have been lower than the yield of $53.3 million from FY2012). I would interpret this problem as showing that, after the extraordinary start-up contributions by the Wrights in 2005 and since, AS enjoyed some years of stability. Since about 2012, however, AS appears to have been undercapitalized. Maybe the various campaigns to disaffect certain corporate donors from continuing with AS have had their effects with its bottom line.

But, like most people here on WP, I consider the public face of AS to be despicable. It was because of that belief that I, and many others, doubt Alex Plank's work (and, presumeably, agreement) with AS. If it was a one-time AS sponsorship of Autism Talk TV, then so be it. Mistakes get made, I guess. I just wish that Alex would communicate with and display some involvement with WP as much as you have. I am sure that you are just as busy as he is, and yet, you offered your understanding of this matter. He didn't. Telling.

Thank you for you informed opinion and all the work you do for us. I especially agree with your speech earlier this year about autistics having always been here. I am in your age range and I have seen both the great increase in awareness and whatever gains have been gotten wiped out by societal trends it become harder for Autistics to function in it.

It is a poorly worded survey, in my opinion. I didn't feel either choice reflected my position. I am sure I am not the only one who simply felt they could not vote at all.

Thank you for sharing your insight.

My thoughts as a member of a community that gives generously of time and treasure to many causes:

On the supporter and donor level, honestly, most people don't understand exactly what Autism Speaks does, they just know it is an organization that cares about autism, and the one they see and hear about on a regular basis. People donate because they care about the autistic families they know, without knowing anything about what Autism Speaks does or how it approaches the issue. To them, it isn't much different than supporting the American Diabetes Association simply because you care about those who have to deal with diabetes. You find the organization that seems to be the face for the issue and that is who you support. Shoot, even a friend of mine who has an autistic son and joined one of their walks had no idea what they actually do or represent. She just had a need to do "something."

They have had tremendous success getting their name out there and making themselves the face of autism. We need to find a way to change that, so that an organization we feel better about exists as the face of autism. That takes contacts and marketing.

I've been saying here for years that autism speaks is a bit misguided yes, but people comparing them to hitler or evil incarnate.that's just not true

Well somed up

If what they do results in Autistics not being born or further stigmatized should I give them a pass because there good intentions?. We tell ourselves Autism is an explanation not an excuse. Same goes for Autism Speaks, good intentions are not an excuse. Frankly it is hard to accept good intentions when they refuse to listen to the people they are trying to help. When they lobby against having automatic autistic representation in OTHER research organizations.

It is really an unfortunate part of human nature we at times do our most damage out of love.

Not a bit misguided, misguided at it's very core.

I did not say nor did john quoted above or anyone has said that autism speaks does no harm,they do a lot of harm.

When people compare them with evil or Nazi's or soon likely Isis.that's s bit extreme and the people will loose the credibility to make valid points

Interesting point.....

If you guys really want to undermine Autism Speaks, then put your money where your mouth is! Talk is cheap!

I have a different opinion of why most donors give.

Most probably know somebody whose child has been diagnosed. Autism Speaks are the only recognized organization fighting a "bad" thing. Outside a PART of the Autism community the nuerodiverse movement and idea are a non-entity. Autism Speaks genetic research, demonezation and exclusion of autistics are unknown to most. Giving to Autism Speaks is a feel good donation given with little thought.

For the political and ruling classes ie people who can do something as I mentioned Bob Wright is a trustworthy "one of the boys" type person. Most of the money and sustained campaigning and pressure up they have felt up until now has come from the curabee side. The dedicated curabee moms are voters with the pro family image politicians care about. With massive un and underemployment we can't hope to give 100000th of the money to our cause they have to give. And since many of us are single we are not the voter the politicians are going to want to cater to. That we removed "combating autism" language from the autism funding bill and got 2 companies to cut the their ties with Autism Speaks despite all these odds against of is no small accomplishment for our movement. We are slowly getting some parents on our side. I would think that the two companies that divorced from Autism Speaks had executives that had kids on the spectrum or knew somebody who did and were horrified when presented with what Autism Speaks is doing.

Last edited by ASPartOfMe on 21 Sep 2014, 1:49 am, edited 1 time in total.

Exactly.

(I actually say something very similar in one of my posts, above)

I think a big part of the solution is to educate people. If you see friends or neighbors donating to Autism Speaks, have a conversation. Tell them why you feel autistic people like yourself (or a friend/family member) are harmed more than they are helped by A$. If you're comfortable doing it, talk to strangers who you see wearing Autism Speaks Walk shirts. Not everyone will change their minds, but many will.