FOUNDERS OF AUTISM SPEAKS IN TIME 100

By Kim Stagliano

Autism Speaks was launched three years ago. Its founders just made the TIME 100 for their philanthropic efforts on behalf of autism.

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!?

Perhaps you are an adult with autism? How has your life changed for the better, having had tens of millions of dollars raised on behalf of your disability/diagnosis?

Kim Stagliano is Managing Editor of Age of Autism and a Huffington Post blogger. She has three daughters with autism. Suzanne Wright once promised her in front of hundreds of people that Autism Speaks was going to look into the cause of autism, including vaccinations. That was in 2006.

The founders have hobnobbed with Donald Trump, traveled the globe extensively and made quite a name for themselves in the highest echelons of philanthropy. The photo ops alone are a publicist's dream!

What have they done for you?  We'd like to see 100 comments.

(In case you're wondering why we don't mention the founders' names, the TIME doesn't bother to mention the name of the child on whose behalf the elegant couple launched the organization. His name is Christian, by the way. We're not bothering to link the TIME piece.)

Comments

[jane]

Autism Speaks has had several events in my state and basically absconded with the money that could have been used locally. They sure use the local people well. USE is certainly the word - use and discard.

I am less than impressed with any organization that would harass a 14 year old girl with Asperger Syndrome who puts up a funny web site that mocks them a bit. They set their high-paid lawyers on her and demanded $90,000 in damages for copyright infringement. Nice.

http://thefamilyvoyage.blogspot.com/2008/01/autism-speaks-charity-bully-autistic.html

[Francisco]

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

[DD]

help??? not at all!

[GrammaKnows]

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!

[JULIANNA PEARCE]

AUTISM SPEAKS DOES NOT SPEAK FOR ME OR MY SON.THEY HAVE HURT OUR COMMUNITIES FUNDRAISING AND AWARENESS ABILITY BY FALSE INFO.
A.S. PUT UP OR SHUT UP
JULIANNA PEARCE
NATHANS MOM
PROUD PARENT OF A SPECIAL NEEDS CHILD

[Margo O.]

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.

[W'right']

"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."

Workingdad you are right. They take money from autism families who are financially stretched to the limit not to mention mentally and emotionally bankrupt over the loss of their child. Since nobody else really cares about autism or the way it affects families (since nobody has really told the public out there what its about, we are so caught up in dealing with our own damaged children), they then hit the target audience for the limited money that they have anyway. Since the state isn't exactly stepping in with resources, and insurance isn't exactly paying for the treatments, its blasphemy of the highest order to extort money from this struggling population for the sole purpose of massaging inferior and bloated egos in the very false hope that THIS might give them, the Wrights, some modicum of happiness.

Try and try again Wrights - it ain't gonna work. You see, the population that you pretended to help was hurt to begin with and your actions have poured more salt into those very wounds. We are hurting from the practices of the corrupt Big Pharma and federal agencies, we are hurting from the inaction and the looking away of Big Media, and we are hurting from the wide open greed and extortion and scavenging of your particular organisation most of all. Because, of all the corrupt power hungry evil set-ups out there, yours is the MOST vile as it falsifies our existence and makes a mockery of the faith and trust we placed in you - yes you THE WRIGHTS - to make it right. Isn't this the ultimate irony of them all - your *name*!!!

[Jan]

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!

[Tanners Dad]

Check out this article that mentions Katie and Christian. Also Paul Offnut gets his two cents in attacking biotreatments.

http://www.statesman.com/news/content/news/stories/local/05/04/0504thoughtful.html?cxtype=rss&cxsvc=7&cxcat=52

[Workingdad]

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.

[DD]

Nothing & always get 'TUDE from her "highness" whenever any other ideal is brought up. I'm sorry but NO ONE has the monopoly on biology.
Way to work together for the kids

[PhillyMom]

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.

[Libby Rupp]

Autism Speaks has not helped my daughter nor have they helped our family get the services or medical care that she needs.

We had a rather difficult 'autism moment' in a major bookstore tonight and everyone around us stared in horror or made unpleasant comments - so clearly the 'awareness' piece hasn't improved either.

Autism Speaks has diverted funding from grass-roots non-profits into their own coffers. These smaller non-profits were helping kids and families on a individual level. Helping families rise from the hell of autism.

The financial disclosures of Autism Speaks show that their funds are going towards jets, entertainment and mostly misguided research, but not the children (or adults) with ASD.

[mrs dr vote]

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.

[Tanners Dad]

Should we send all our comments to the great AS leaders. Better yet lets send it to all those at the grass roots level planning the next great community walk for AS. I know a new walk is planned in Terre Haute Indiana this September and they already have pledges for over $7000. Everyday the money comes in. Everyday I wonder how that will help our children.

Part of the reason we had discussions on our way to the AS benefit in Chicago was the fact my wife said downstate IL would never see a practical benefit from those parading around in their tux and tails. She was right two years have gone by and my son barely gets 20 minutes of therapy at school.... Even that goes by the wayside because the therapists have too many IEP meetings to prepare for. We have a lot to learn.

[usna73]

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.

[Lin]

Can’t be certain now, who,s worse for our community? Is it As or Autism Diva? Pathetic really, the need to revel in such pitiful, self-appointed glory and recognition. At least Autism Speaks can account for their connection to autism. What or who is Autism Diva’s? Or is at ALL fabricated? Bravo, Autism Diva, you most certainly must be very proud of your blob, where nothing is accomplished but battering, mauling over and out right beating up other parents and those they love and care for. Nice job!!

Pretty obvious why it is you and AS are such a good fit. Again, you most certainly must be very proud…

[Deborah]

"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).

[Sam's MAMA]

We, too, were so very excited and regrettably, hopeful, when Autism Speaks began. Finally, a voice with some clout and mega resources...surely they will hear our cries. Surely, they will help our cause. Surely, they will be the voice our children and their families so badly need. Unfortunately, and again, sorrowfully, it was Autism Speaks who did not listen...hear our cries. Rather, Autism Speaks hinders our community, while capitalizing on so many unsuspecting, trusting individuals and organizations. So, once again, we were left beaten and battered on the wayside, as they roared by us, stopping only long enough to ask us for our time and commitment to them, all the while gladly taking our hard-earned, diminutive funds and energy. I can’t be sure who it is that Autism Speaks, speaks for…I am certain it is not me or my family.

[Bonnie Sayers]

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.

[Richard F]

I have had many requests for me to donate money to Autism Speaks but Autism Speaks has not helped my 8 year son David who is vaccine injured with an autism diagnosis.

[I'm tired]

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.

[Narcissus]

Autism Speaks is a chance for Suzanne Wright to experience the limelight her husband used to have, nothing more.

- NarcissusMaximus

[Gatogorra]

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.

[What About The Pretzels?]

Now come on.... Puzzle shaped pretzel pieces! WHERE is your gratitude people!? Oh, your kids can't eat them? Neither can mine. Gluten filled autism snacks. Beyond belief.

Kim