The only thing AS has done is to take vital financial resources and turned them into nothingness. Thanks for not helping my child.

Autism Speaks pulled a fast one by merging with NAAR and CAN. Now, Autism Speaks is no longer a 501(c)3 responsible to report full disclosure on income and expenditures...so where are all those $$ going? Where are the watchdogs? Why don't their fundraising efforts say "Raising money on behalf of other organizations"??

No...they just stay high profile, mislead the public into believing the $$ go to them, for the "research" listed on their website.

The Form 990 provides the public with financial information about an organization, and many times is the only source of that information. It is also used by government agencies to prevent organizations from abusing their tax-exempt status....so why hasn't Autism Speaks filed Form 990's?

Why aren't they even on the radar for charity ratings?
http://tinyurl.com/49e64b

If AS is hiding anything, like that they collect money under their name and distribute it to other charities, why aren't they forced to disclose this? Doesn't this allow them to conceal projects that don't conform to their stated purpose? Doesn't it mislead the public in believing they only do what is listed on their website?

Better to fund anti-vaccine safety projects and keep the money rolling in?

What makes this even more despicable, is they make films showing how "bad" autism is to keep themselves in the money - like Autism Everyday. It was disgusting to see a young man having his lunch - a bottle of Gatorade, filled with chemicals and colors that set off even NT kids sitting on the table...and them filming away as the level in the bottle dropped while the young man launched into a meltdown.

Manipulation of kids on the spectrum for financial gain is a hallmark of AS. We shouldn't feel sorry for the kids and donate to AS to help them. There's photo evidence they're in it for themselves.

GrammaKnows SOMETHING is rotten in this apple bin!

Bob and Suzanne Wright are the public face of a very cunning Big Pharma-inspired misinformation campaign designed to suck funding away from worthwhile applications into useless "research" to prove the genetic origin of autism. If they are so convinced that autism is genetic, I wonder which of them they believe caused Christian's condition? (oh, it's from the other side of the family, no doubt). They are contemptible.

I would like to share what Autism Speaks has done for my family.

Autism Speaks came in to the area where I live with their BIG GLITZY WALK, which they held within a week of a local grass roots organization's Autism Walk. This local group who used the money they raised money to provide FREE SERVICES to families.

Autism Speaks came in and sucked away a lot of the local group's opportunities to fund raise. A.S. did this with their radio marathons, and glitzy tv ads and by getting local Moms and Dads to think they were doing something important for Autism.

The little agency who had been providing services to families for well over 10 years got slammed.

So how did this hurt my son and our family? Well, now there is less in the way of free sercices. For example: my son attended a group for young adults who have more significant levels of autism. This wonderful group got together twice a month from September to June, to do fun activites. That was 20 group activities a year for my son to attend. Now though the group only runs two times a year for 3 weeks, for a total of 6 weeks a year. Why? I'll tell you why... LACK OF FUNDS!

So my son's opportunity to be out and have fun, and to give me a much need 90 minute break hurt our family!

This is obviously a drop in the bucket but that group was really meaningful for my son.

Autism Speaks would rather suck other group's fund raising abilities dry so they can do their thing... And don't even get me started on their ignoring research that would actually get us somewhere!!

They sure as hell don't speak for me!

AS is classic "black ops" from the bad old days of the CIA. The organization has been created by the CDC/AAP/FDA/PHARMA to "raise awareness" but really to suck funds away for research that shows autism be caused by ANY environmental trigger.
They are not going to help us because their plan is not to help us. They are not going to help us pay our bills because they have decided that we are the ones who are going to pay the bills. And most certainly they are not going to fund research into anything that helps recover our children.

Other than that, I am sure that they run lovely fundraisers, golf tournaments and celebrity photo opportunities.

I won't be going to any of those. I cast my lot with the folks from Autism United, NAA, TACA, SafeMinds and other organizations that actually do something. Put all these organizations together (I am sure that I left other good ones out) and you have the real deal: AST - Autism Speaking Truth.

That is something AS will never do.

AS and ASA have not done much for my son. In fact, after the last article in the local ASA magazine, which suggested that autism was overwhelmingly a genetic issue, I decided that I was through with them. How can a disorder that was 1 in 7000 to 10000 and now is 1:150 be primarily genetic? I am in my early 40's, and growing up I did not know one child who had autism or autism like symptoms. Today, just between friends and coworkers, I know of almost 10 children (all under the age of 8) who have autism. AS is good at sending me emails to write Congress and my local reps, or to raise money for walks, but I have yet to see any benefit for my son.

I stand with Katie and Christian. They have done more for Autism than Katie's "celebrity" parents have. I met Katie last year at Autism One. I think that she is geninue and very much cares about and loves her child as we all care about and love our spectrum and non spectrum children alike. We are here to help our children become the best that they can be even to function in society.

God gave us these children to love and care for. I feel sorry that these grandparents can not stand with their grandchild or any other child on the spectrum and say that the really helped the individual child with ASD
instead of just collecting money for their own coffers.

WE don't need "celebrity" autism. We need more lawyers and activists who will turn the societal attitudes, apathy and immorality upside down. Justice will only be done when the afflicted and aggreived party won't ake it amymore. There was a point where I thought Mrs. Wright might walk away from her billionaire husband, but I guess that money and spotlights are far too addictive.

I'd always be willing to give anyone a second chance to do the right thing. Since my family is 15 years into this nightmare and we truly understand , I choose to identify with Christian and his parents, not his grandparents.

"Please tell us, what has changed for your child with autism since the inception of Autism Speaks and it's subsequent merger with NAAR and CAN!?"

NOT ONE DAMN THING HAS CHANGED (improved).

I read about that family making the list in my google alert and was not surprised either. I did not read the artice so was not aware they never mentioned the grandson by name. There was such buzz when they first started and did that week on autism: the hidden epidemic in 2005. The first time I heard from Mrs. Wright was on The View and I recorded it and was shocked at how fast she spoke and did not seem to know what she was saying to Barbara Walters and she insulted those living with autism. We are in Los Angeles and did not attend last weeks walk in Pasadena. Autism Speaks will never get a dime from me, not that I have any extra as the single parent to two boys on the spectrum. I do not visit their website and do not recommend it to others. They have not helped my family in any way or my community.

Oh dear, now I'm crying. Sometimes it happens. To think about the needs of our community is overwhelming! The needs that are left to drudge on day after day are SO MUCH greater than the needs that are being met! I can't say I know of a single family who has the resources to address the entire bundle of issues that comes with the diagnosis of autism as it it alot more than just money.

I was very excited when Autism Speaks was first started. Some powerful people had finally been hit with autism and things were going to change! The medical community and everyday people would soon know what we are up against! Seeing Suzanne Wright's face on Larry King Live saying that autism had knocked on the wrong door... her passion was equal to my own! But, time went on and nothing happened. Some campaigns for this or that. Pediatricians to be able to recognize it, without actually listening to us parents as if we don't know a damn thing, here's some videos of kids with autism for you. Some billboards with their logo. Who talked about the importance of Hannah Poling? Not Autism Speaks. SO MUCH money raised and still nothing about...anything! Do they even give back to the tired and poor community that raises money for them thru their ever so popular walks? Not to anyone I know, in real life or on the internet. It's sad. It's frustrating. And it's yet another fist to the gut with the round after round the comes with autism.

We have effected twins, so the answer re what AS did for our kids is "diddley" and "squat".

Oh, but because of AS's disinformation campaigns, now every Joe Blow has become an armchair expert in "spotting the signs" and "knows it's genetic" and this has made our lives vastly more boring and difficult.

"The bill passed, in the last seconds of legislative session yesterday, but we are unsure which version has passed, but from what I have read in the news, it looks like the Autism Speaks version is the one that went through."

Monica I am sorry for what you Floridians have to endure. Don't you think that IF the organisation really cared about the folks who HAVE autism they would have listened to you and made amends? What exactly IS their agenda? I have so far been unable to figure that out. Does anyone know? Something seems to be amiss here, unsure what it is.

Monica,

I have been following this for a while. I am disgusted with Autism Speaks, and have been for a long time.

There are lots of us out here who are with you on this.

This is a blow to us (yet another) but we'll keep on fighting for our kids. We'll never stop.

Terri

P.S. What has Autism Speaks done for me? Mocked every truth I know.

The existence of Autism Speaks has not helped my child one bit. Nor any other child afflicted with autism that I know. People always seem to get excited about the "awareness" they are raising. I am all too "aware" of autism since my kid has been struggling with autism for over ten years now. I was kind of hoping to get some kind of direct or indirect help from this autism mega charity (I use the word loosely). Maybe if they gave back some of the millions they are raising in the form of community based services that are hard to come by. Many of our kids are just on waiting lists to get some type of services.The future looks grim for our kids in terms of what will happen to them. Who will care for them? Where will they live when we can no longer care for them ourselves? My son will be an adult in the not so distant future and I worry what will be out there for him. Is it selfish to think that way?

I think the best thing to come out of AS is the "Autism Everyday" video. Beyond that they just seem to be sucking funds away from the people who really need them.

Autism Speaks has muscled their way into our town and set up a fundraising walk that competes with the one that had already been established. This takes local money away for local services. Thanks AS

In the fall of 2006, my newly formed group, Aware 4 Autism, organized a kickin team for Tampa Bay's first ever Autism Speaks walk. Many parents worked diligently to raise funds from their companies, and familes.

When all was said and done, and it was time to walk, our teams efforts had provided Autism Speaks with over $20,000. We were of course, the top team, and I was their captain.

This week, Floridians were duped by Autism Speaks into promoting their elitist version of the autism insurance bill. The bill they promoted would only help children in Florida with autism who are covered by private insurance, which comprises only 13% of children in Florida with autism.

They sent out many action alerts, asking us to call Rubio, the speaker of the house, and encourage passage of the amendment-free version of the bill. They called the amendment "red tape" and a "burden for Floridians".

They never explained that this amendment would expand coverage to children with autism on Medicaid and Florida KidCare, about 87% of children in Florida with autism. They never explained that this amendment would help 87% of the families who raised thousands for their organization, and walked in their walks.

Instead, they sent action alert, after action alert, asking that us parents call Rubio and insist that the amendment free version be passed, without explaining that amendment to us.

Thursday morning I called the office of Representative Gardiner who inserted the amendendmendt to gain clarification. The aide was wonderful, explained it to me, and emailed me the talking points.

I was so disgusted that Autism Speaks would use such a tactic, not caring about what the bill really does, only wanting to ensure quick passage and revel in the glory.

That shit don't settle well with me. I spent 2 days trying to undo what they had done, and emailed the hell out of Florida, and explained what the amendment is, and how without the amendment, the bill means nothing for our children.

I sent tearful letters to all parties involved in this legislation, asking that they ensure coverage of the 87% of children with autism in Florida.

I also contacted Autism Speaks Florida regional office, and asked why they would not want to include children on Medicaid, to which their answer was "they already have ABA covered" (btw, it's not!). Autism Votes said that "something is better than nothing". I have also emailed their media relations contact with my disapointment, and will update you on their response.

What DOES Autism Speaks do with all that money? they certainly have not educated their staff, or lobbyists, and they certainly have NO compassion for the 87% of children with autism in Florida who's parents barely have a pot to pee in.

The bill passed, in the last seconds of legislative session yesterday, but we are unsure which version has passed, but from what I have read in the news, it looks like the Autism Speaks version is the one that went through.

From my local CBS affiliate-

"Before the House voted 117-0 to take its final vote of the year, Rubio, who essentially ends his term as Speaker today, asked returning members to pledge to expand the legislation next year.

"Pledge to each other today that we will not allow this issue to end," he said before ending the session at 6:02 p.m."

It is quite obvious though, that Jade's future is not important to Autism Speaks.

Nothing.

Autism Speaks has hijacked local money and provided a forum for misinformation by people trying to prevent children from getting medical help.

What a waste of money, bandwidth, and volunteer time.

This is my experience with Autism Speaks -

Check out clerk at department store wearing an AS button to the 3rd lady in front of me - "Would you like to donate to Autism Speaks?"

"No thanks"

Next person - "No thanks"

Next person - "I already did" with no eye contact.

Me (growling) - "I don't donate to AS. I donate to other organizations that actually help with treatments." She says "I don't know what they do."

The clerk did not ask the next person after me to donate.

If the mission was awareness (what was the mission?) of the disorder they get a zero for that. Awareness means letting the man on the street know exactly what the disorder is from the point of view of generating empathy, and then letting people know how they can help to make things better.

Overall rating - Poor.

PS: They have given me nothing. Except for angst.

Autism Speaks! Ha. What have they done for me? Have I mentioned that they tried to have me arrested and thrown in jail? Oh I have? I’m sorry, I just can’t seem to say it often enough.

I’ve had it suggested to me that perhaps I should file a lawsuit; take this to court, if it really disturbs me that much. This was suggested to me by the Vice President of the Autism Society of Greater Cleveland (local chapter of the ASA), Mr. Gus Gallucci. He suggested this to me when we spoke a few weeks ago about what happened to me—about the arrest attempt outside of the Cleveland House of Blues a year ago last April. He suggested this to me as he was explaining to me why it is that he feels it is perfectly acceptable for him to use his organization to continue helping Autism Speaks to raise funds. (In all fairness, I should point out that while Mr. Gallucci feels that there is no reason that he shouldn’t help Autism Speaks to raise money, he does feel that it was unacceptable, what they did to me that evening one year ago last April. He does feel that it is not acceptable to threaten a person with arrest simply for standing on a public sidewalk and asking people politely if they’d like information about thimerosal in vaccines. At least, this is what he told me. Along with “I’m sorry but I can’t shun a whole organization just because you have some ‘issues’ with them.”)

‘Issues’, Mr. Gallucci?? You think I have some ‘issues’ with Autism Speaks? Perhaps you feel that I could benefit by consulting with one of the pshrinks that you could put me in contact with (assuming I have the ability to pay them the steep hourly rate they charge). How ridiculous that I should be disturbed because, simply for standing on a public sidewalk politely asking people if they’d like information about vaccine safety, I was told that I must leave or else face arrest. How silly, eh? That a person, a perfectly respectable, law abiding citizen, should be disturbed by being threatened with arrest!

How ridiculous that I would be upset when the police officers, called to the premises by the organizers of the benefit concert—the lovely ladies all in their shiny glittery evening finery, of Autism Speaks—spoke to my husband and said to him “can’t you just take her home?”, as if I were a dog and not a human being!

You’d better believe that I have some unresolved ‘issues’ with their organization.

I’m just curious, Mr. Gallucci. Why? Why can’t you shun an organization simply because they try to arrest people who speak the truth about vaccines? Is it perhaps because you really don’t find this an unacceptable thing to do, at all?

Let me say that although I’ve never been diagnosed as having any ASD, nor have any of my four children, I nonetheless don’t need a pshrink to know that I often have trouble with, let’s just say, ‘fitting in’ socially (I am not adept at chit-chat). I have to also say though that I’ve never been in any trouble with the law. I might as well have been raised by the Anderson family. I’ve got a house in a suburbs. My husband holds a respectable job as an engineer. I once held a job as an engineer—okay maybe a bit unusual for a woman but certainly respectable, I always thought—for years before I had children. In a nutshell, I have done everything ‘right’ my whole life (well except for not bolting from the line at the nurses office in my grade school where the whole class had been marched to in order to get our childhood vaccinations. And except for being foolish enough to subject my own children to the same poisons), from getting an education to obeying the law, always, to doing my best to raise my children to obey the law and to respect other people. And yet there I was, on the sidewalk handing out information about thimerosal to people who said “yes” when asked if they would like information, when the police were called as if I were a terrorist or a common criminal.

No, I am not so very upset that I am ready to file a lawsuit because some people tried to have me arrested simply for speaking the truth about vaccines on a public sidewalk. As I’ve said, I’m very unfamiliar with the legal system, never having been in any legal trouble. Nor am I quite yet ready to file a lawsuit for libel against the President of the local Greater Cleveland chapter of Autism Speaks, Ms. Goldberg, for lying publicly on a local support forum when she claimed that it never happened. Why on earth would I be upset about being lied to and lied about?

Shari Goldberg, Gus Gallucci, Alison ‘the only thing parents of children with autism do wrong is have bad genes’ Singer, I have nothing further to say to the likes of you, although I will never stop speaking about you until I am cold and dead.

I spit on you.

I’ve managed to get on without your ‘help’ all of my life, and there isn’t a child anywhere on the spectrum who has benefited one whit from a single one of your parties or your chili cook-offs or anything else that you’ve done. The important thing though is that I’m sure you all have had a fine time at them. So you just keep on getting your babysitters and going to your fundraisers; but will you please just get out of the way of the people who are doing the real work?

I hate to start sounding like the neurodiverse, however it’s an urge I can’t resist, at the moment. I am going to have to take a small step away from the lily-white, Father Knows Best life I’ve led, to say what I’m really feeling at the moment.

If you don’t like what I am, I suggest that you stay far the hell away from me and my children.

Here's 4 comments: Bupkes. Nada. Niente. Zip.