Old Promises Never Kept at Autism Speaks

By Kim Stagliano

Katie Wright wrote a powerful post today titled, Why The AS Scientific Advisory Committee Needs to Resign that raises excellent questions. As a corollary to her post, I'll add that in May, 2006, I met Suzanne Wright at an event for the Doug Flutie Jr. Foundation held in Waltham, Massachusetts. I had high hopes that this large, shiny, glitzy, well funded organization called "Autism Speaks" was going to make a real difference for my children, their older peers on the spectrum, and those to follow. I asked Mrs. Wright  blunt (but polite) questions. "Shouldn't we find out what's causing autism?" And Is Autism Speaks going to investigate vaccines as a cause of autism? She answered with a definitive, "YES." In the meantime, the autism numbers have gone from 1 in 166 to 1 to 150 to 1 in 110. Here's the video: (Thank you to Erik Nanstiel of FAIR Autism Media for the code.) Why isn't the science committee listening to their own founder? 

Every year the Wrights win humanitarian awards presented at fancy white tablecloth dinners. It does not appear that they wield any particular influence in their organization, however, given Katie's article on where the science funding continues to go. Meanwhile, the walks continue to rake in millions from parents and loved ones of the autism community. And good people from coast to coast work in the trenches on their behalf. No one says we all have to sit back and watch Autism Speaks grab for all the marbles. Or wait for them to conduct research. We have a few aggies of our own, don't we?

Kim Stagliano is Managing Editor for Age of Autism. Her "Kimoir," All I Can Handle, I'm No Mother Teresa, is available for pre-order at Amazon and will debut in November.

Comments

[Ben Edwards]

The Wrights don't deserve any awards. They've done nothing but keep autistic people OUT of their organization. I am autistic and PROUD of it. I don't need a damn cure because I am fine the way I am. I deserve, like everybody else, to be judged by my character and not my abilities. There is nothing wrong with having self-respect.

[Kerbob1]

Chief! We found better stuff!

AS can use this PSA anytime they want!

http://www.youtube.com/user/kerbob1#p/u/18/sU7z95LgKVY

[Down with Autism Speaks and Government "Health" Agencies]

Millions of dollars in the coffers of Autism Speaks, NIH, IACC and the CDC.

Result!!!

Millions of dollars down the toilet and zero results.

Greening the environment by waste!!!!

[Mercury Dad]

Katie

I tried to engage Geri Dawson in a polite, civil and constructive conversation regarding thimerosal and vaccinations. Thusfar, she has refused to return my emails. If I email your mom or dad and she/he forwards my email to Geri, is she more apt to respond? I'm totally serious and rather desperate at this point.

All my best

[Randy]

"We have a few aggies of our own, don't we?"

"If I had a million dollars
If I had a million dollars
I'd buy me a monkey
Haven't you always wanted a monkey?"

Show me the monkeys (is that why that old BNL tune's stuck in my head?)...

I used to dream of winning the Powerball so I could drive my ragtop Beemer down to the marina, where my Mangusta 165 is parked, throw some kid a couple $20's gas it up and a couple more to load up all my supplies (beer), and spend the week / month / season jamming up and down the Barbados coastline.

Now I dream of winning the Powerball so I could fill the ARI bucket, and witness all those fine upstanding medical media mouthpieces simultaneously shit themselves as they witness some real gutsy research unfolding.

Funny how fast cars and big boats don't matter anymore (but beer is still a good thing, on occasion... :-)

[Henderson]

I know you're not booting me :). I was joking. I adore all of you here - I'm practically addicted to AoA. And sometimes, there are days on end, when I can't read it and practically have withdrawal symptoms.

Hmmm... a Dick Cheney comparison? And, I keep referencing the "big tent." Hmmmmm.

[Jude]

Cilantro has provided really good results for me. Blend it into a paste and give as much as you like to your child everyday. Also zeolite powder helped tremendously. Non-fluoridated water distilled or spring is also essential. I have asperger's but also mercury poisoning. I hope the Corporate Scum who are doing this genocide are tortured.

[cmo]

I am not sure how "Autism Speaks" wandered so far away from what may actually help the Wright's grandson & others...

but they could follow the lead of their daughter and scrap the AS Organization and start something new,

such as... Autism Listens

Sign me up for a walk.

I'll make my own T-shirt.

[Stagmom]

Henderson, we're not booting you anywhere. Katie is a powerful voice on AofA. We are grateful for her participation and her chutzpah. She's stuck her neck out so far she could play a giraffe in her son's school play. As for her parents - I rather fancy them to be like Dick and Liz Cheney - who clearly adored their gay daughter and yet, whose politics was advanced by platform planks that worked against her. I don't know how to reconcile that. It's not my family. And I don't know the dynamics. Kim

[Henderson]

Guys - I'm the one who likes Autism Speaks (don't boot me out of here). I adore the Wright family first and foremost. BUT - we are no where unless we have peer-reviewed, accepted science. The problem is how science panels are formed, their terms, their biases.

But, the reality is - I'm getting so depressed, even when things are real (the Polings), it goes no where (in fact my own family/cousins, filled with Amanda Peets - just blasted me in response).

Or take food dye and sodium benzoate - when the link was finally, undoubtedly there (after 30 years of back and forth) - a perfectly designed study - published in the Lancet in 2007. Where did it go? No where.
http://www.time.com/time/health/article/0,8599,1659835,00.html

No one is listening. I quote this study all the time re: food dye and sodium benzoate and people just roll their eyes.

The sacred cow of the vaccination schedule? Forget it.

Let's just all move to Ashland, OR (I read somewhere today - I think about the PBS special) where 1/3 of the kids there aren't vaccinated. They have an awesome Shakespearean festival there:
http://www.osfashland.org/

[Andrew Gammicchia]

Kim,

Thank you for asking that question. It's ashame they've not addressed the answer and continue to raise funds to divert from the obvious.

[kathleen]

No money to AS ever! They are worse than the problem, they pretend to help and offer hope, while doing everything they can to prevent help and hope. I wouldn't spit on anyone from AS if they were on fire. At least when dealing with most of these folks furthering the vaccine damage, you know where they stand. It's honest combat (sort of), but AS is slimey, they offer nothing while they bank on promises they NEVER deliver!

[Benedetta]

Katie;
From reading what you write here, from hearing your mother say "This is too loud of a voice to not be heard" I know your hearts and minds are in the right place.

Before there was Austism Speaks there was Babaraba Fischer and we thought - I thought we would get our answers then.

We did not: Instead we got the attitude that we must protect ourselves from diseases no matter what the cost. We would compensate those damaged through Vaccine Compensation Court.

Look what happened after that. New vaccines were made for common diseases that was viewed by all of us as no more than the right of passage to adulthood. The younger generation cringe in fear of MEASLES??? CHICKEN POX??? Brain injuries, immune disorders have sky rocketed. AND the vaccine court - You might win if you are willing to gamble with everything you own, or you are a neruologist married to a lawyer/nurse.

Our enemy starts training in the seventh grade with Jenner, and they continue year after year even into college in every medical like class, in every science class. It also continues into medical school. I know because I asked the University of Kentucky Medical School what they taught. The old gentlman doctor wrote back a very long letter, and it was the same as I learned in a regular college course. He apologized at the end of the letter stating he knew that what I was asking if they taught anything about adverse reactions, and the answer to that was no.

So we have generations upon generations of trained medical professionals coming out of these schools brain washed. They melt into Austism Speaks, the IACC, THE FDA, THE CDC, THE NIH, THE HHS, THE CONGRESS.

What is one percent (yes I know - it is a growing number) of the parents againest this?

Education is the problem - This is were the fight must begin.

[A Mom]

AS is not part of the solution, therefore they are part of the problem.

Not enough people know that they raise money to fund and re-fund studies like those mentioned in the other post as well as studies that are just insulting to parents.

Their other goal seems to be to pay the exorbitant salaries of their staff. I would rather give my money to an organization that is helping children now rather than helping its staff and the pharmaceutical industry by extension in their avoidance of addressing the real problem.

They have their feet in so much. How many times, I wonder, have other organizations been told (by potential sponsors), "sorry, we have already pledged our support to AS."

I think their public image has a lot of people fooled. And that's another travesty if it's taking away from Autism organizations that really want to help the children and their families now.

All we can do is continue to educate the uneducated, I guess. People really don't want to help fund those kinds of studies or the 6 figure salaries of the people responsible for them.

AS is standing in the way of change, in my opinion.

I am not one to give anyone there a pass on that. Nothing will change if that continues to happen. The hampster wheel will just continue to go 'round and 'round.

[sarah]

I can't fault Katie Wright. She been a strong, faithful advocate for our children and we need her in our corner. I appreciate the work she's done and her dedication to the cause.

I am dismayed by Dr. Geri Dawson and feel she needs to listen to the families and quit bending to the politics behind this crisis. It is Dawson who is in a position to help steer the direction of research on autism. She needs to push back and promote science that represents the interest of the families.

[Anne]

OK. Autism Speaks is obviously not going to fund a vaccinated vs never vaccinated study. The CDC/NIH are obviously not going to fund it. If we want it done, we'll have to raise our own money. Can we create some kind of fund, and everyone steer donations in that direction? I've been hoping for this study to take place for the last decade (and I know others have waited even longer). My patience ran out a long time ago. My own kids are recovered (thanks to DAN! docs), but I am haunted daily knowing new kids are being needlessly injured. I feel like I can't really get on with my life until this issue is resolved. Let's figure out how to fund this study!!!

[momofavaccineinjuredchild]

who puts these people in their positions? who has the power to take them out. if one of my employees was not preforming in the way that embodies my vision. that is that, grab a box, collect your family photos and be gone.

AS is counterproductive at every turn. I'd like to see them fold up shop.

[Jules]

I was beginning to think it was just me. Thank you for posting this article. I made a donation to Autism Speaks last spring. I have been confused as to what they are doing and why in the state of Florida they aren't active in the autism community. I've emailed a number of times to the Florida contacts asking them to please attend our state autism task force meetings since the task force member from Autism Speaks lives in Danville CA and doesn't attend the meetings. I don't plan on making a donation this year or doing the walk next weekend. I've emailed the Florida contacts explaining why I won't donate.

[AnaB]

I supported AS's initial genetic research. It was an important starting point. But, like Katie says, to keep funding the same researchers and same research over and over? At some point, enough is enough and it is time to address some other crucial aspects of this condition...other ignored subgroups.

Katie's mom, and AS in general, are in no different a position from any Autism group around the country who raise money from mainstream sources. Last year a friend of mine wanted to collect vaccine injury stories from parents to present to congress and submit to the national archives. She asked her local Autism parent group if she could present the idea to the parents in attempt to collect their stories and she was told no....by a parent group!! Why? Because any Autism group that does fundraising has to steer clear of the vaccine issue. So, if this is happening in our own grassroots groups, how can we expect it to be any different for AS? I'm not saying this is right, or good, or that I agree with it - I'm just saying that it is - and that it is happening everywhere, we only have to look into our own advocacy group's backyards.

[Katie Wright]

My Mom, Suzanne Wright, really meant what she said. She has been totally behind the need to get vaccine research done. My Mom is not afraid of controversy and is completely supportive of our families. She knows exactly what it is like to see a child practically disappear in front of your eyes. My Mom came w/ me as I took Christian from doctor to doctor looking for help. She was as frustrated and incredulous as I was that regressive autism had been a virtually ignored subject by the mainstream medical community.

Both my parents are so open minded and were very much engaged in the DAN! conference we just attended. I wish I could say the same of all AS science employees.

Please remember that my parents cannot choose grants. The people who do have total control over the grant process are Mark Roithmyar, AS president and Dr. Geri Dawson, AS Scientific Affairs President.

if you have questions or comments regarding AS's fear in financing comprehensive vaccine/ autism grants please direct all enquiries to Roithmayr and Dawson.

[December Courtwright]

Hmm...either she was enlightened by your observation and concern (over the article), or realized that her own concern about thimerasol needs to be revved up as much as yours (and ours)!

I am dreading asking my son's Pediatrician if he thinks autism is a static encephalopathy, as suggested by Dr. Julie Buckley in her book, Healing Our Autistic Children, that I'm diving into. I may just stick to his DAN! Doc and jump ship. Just don't have time to "educate" a regular practitioner.