Suzanne Wright Speaks. Does Autism Speaks Listen?
On May 1, 2006, Suzanne Wright, founder of Autism Speaks promised me that Autism Speaks would study whether mercury and vaccines are part of the cause of the autism epidemic. Here's the video [Quicktime required].
Mrs. Wright made this promise at the Children Making Strides/Doug Flutie Jr. Foundation event in Waltham, Massachusetts, where she and David Kirby were the keynote speakers. Mr. Kirby is the author of Evidence of Harm, the book that discusses the mercury and autism connection. Both Mrs. Wright and Mr. Kirby were well received. And here's the Autism Speaks webpage showing Mrs. Wright with Doug Flutie.
I'd like to know why, in fifteen months and with tens of millions of research dollars, numerous "Walks" and fundraisers, I can see no progress toward answering my question. I mean Mrs. Wright no ill will. But if you're going to wear the crown of the founder, you have to expect the serfs to pick up a pitch fork every so often when their hunger (in my case, for answers) becomes overwhelming. I have three daughters with autism. Call me crazy, but I'd like some answers for my children.
If you've ever seen Mrs. Wright on Larry King or The Today Show or in person, I think you'll you agree with me that her passion to help her grandson Christian and my girls and the thousands of kids with an autism diagnosis is genuine. As is her grief. If she's acting, someone had better tell Meryl Streep that she's got some serious competition.
I'd like to know who (if anyone) is stopping Suzanne Wright from making good on her word. Is it Alison Singer? Is it Dr. Eric London? Is it pressure from pharmaceutical lobbyists? Is it the pharmaceutical companies themselves who've spent a fortune advertising on Bob Wright's NBC? (I realize he is no longer in that position.) Is it the US government who mandated the vaccines in the first place? What about The American Academy of Pediatrics who have steadfastly denied any link, even as they added a flu vaccine with 25 micrograms of mercury to the childhood schedule?
I suppose that I sound like I'm writing an X-Files episode. Well, it feels that way sometimes. "The truth is out there." was the show's motto after all.
Did Mrs. Wright suddenly change her mind? I don't think so. She is media savvy. She could have easily hemmed and hawed and said just enough to keep me from foaming at the mouth without making the firm promises you'll hear on this clip. I think she spoke from her heart and gut. I'll let you be the judge.
The clip is only two and half minutes long. I'm the shaky voiced gal who asks the second question. You'll hear Mrs. Wright say, "My new friend, Kim." Although that ship might have sailed after this post.
I'd like to thank these folks at Autism Media for providing the technical work for me.
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Wouldn't the resources of Autism Speaks be better directed toward helping children with autism, programs helping children, public school funding, et cetera? Concrete, immediate action seems more practical than looking for a link that very well may not exist. (Besides, everything I've read recently strongly points toward a genetic link.) Answers may not be available for years. I'm sure most parents would be happy to see their children helped NOW.
I actually stopped visiting the Autism Speaks website after watching a video of how it is to have an autistic child. We follow dietary restrictions and treat the whole child, and watching a child, in that video, sit down to lunch rather calm, and seeing that child launch after half a bottle of Gatorade (water, sucrose syrup, glucose-fructose syrup, citric acid, natural and artificial flavors, salt, sodium citrate, monopotassium phosphate, ester gum, sucrose acetate isobutyrate,and any combination of Red 40, Blue 1 and yellow 5).
With photo evidence like that showing an acute reaction and no one paying attention, it just makes me sick for those kids to not have anyone in that organization going to bat for them, and to exploit them by showing how bad their behavior is, when the reasons for the exaggerated behaviors coming on was put in front of him by his Mom.
No, Autism Speaks isn't listening.
GrammaKnows, there ARE some very good people at Autism Speaks.
So keep the faith, GrammaKnows. Remember how Harry Potter had to live under the stairs before he knew he was a wizard? By speaking out (and it isn't easy to go up against a bazillion dollars and a wall of power) I'm just trying to make sure our "Harry's" have access to their wands.
Kim Stagliano
This issue is so hurtful it is beyond words. As the mom of a child with the autism label and not-so-coincidentally mercury poisoning (yes, we have proof positive of both) I can tell you the results of mercury toxicity were immensely painful in comparason to the the grief felt when "we have your diagnosis for you and it is autism" was uttered.
We have our truth!! What continues to be unfathomable is a government and society that refuses to acknowledge our truth.
Thank you, Kim. We too would like real answers and expedient action. Until such a time, the enormous fund-raising and appropriations are doing little to help our son and sadly, countless others as well.
Lin Wessels
Sam's MAMA (Mom on A Mission for Autism)
Kim, great post as always you are right on the mark.
I am still trying to find a family who has been helped directly by Autism Speaks.
If they will not help us I wish at least they would get out of the way of those who wish to help our children in their time of need.
Richard F
I've seen her in action and Kim is a great mother. No horns. No pitch fork.
We all love our kids. We all want what we feel is best for them. No matter which side of this debate we land on.
Kim Stagliano, mother of three daughters with autism, is like a lot of us watching our children grow older. We see doctors at a loss to
do much for the epidemic number of autistic kids filling their waiting rooms. Schools are facing bankrupting costs trying to provide for
all the autistic students. Waiting lists for services are now part of the system. Parents struggle every day while health care officials
pretend autism has always affected one in every 150 kids in America.
We also see these same officials refusing to recognize the numbers as a health care crisis. Millions are spent on one bizarre research study
after another, all carefully avoiding the festering controversy that will never go away: the claim by a growing number of parents, doctors, and scientists that vaccines are linked to autism.
Kim asks about the promise that Autism Speaks would also promote research in this area. Why isn't this leading autism organization moving mountains to pursue every possibility? Why are millions being spent on trying to disprove the laws of nature and promote the myth that we're in the midst of the first solely genetic epidemic in history? How long can researchers pretend that injecting children with known neurotoxins like mercury and aluminum and a host of other chemical toxins along with live viruses hasn't harmed them?
Kim is speaking for her children and all the rest of the autism community when she asks why they're promoting awareness with walks and fundraisers,yet they're not looking for real answers.
Anne McElroy Dachel
"Parents struggle every day while health care officials pretend autism has always affected one in every 150 kids in America."
There's no reason to believe it has not. And in fact, studies that look at possibly undiagnosed autism over time find a stable rate. You're making the common mistake of confusing 'diagnosed cases' with 'cases'.
You hit close with the "(if anyone)", but it needs to be a "what" not a "who". Every real study to date has found no link between vaccines and autism, and you can't show what isn't there. Perhaps she is waiting for another pseudo-report written by the Geiers to sell their latest product. Or maybe she's waiting for Kirby to backpeddle again. Who knows, but I'm sure there will be some conspiracy theory about it.
Autism Speaks may be raising awareness, but it's focus on mercury and vaccines is harming the study into the real cause of autism (which the latest studies indicate a (possibly) strong genetic component, but it also probably does have some environmental factors). Forcing scientists and doctors to do yet more and more studies that show the same thing - no causal connection - is wasteful when we should be focusing on looking for the real cause.
Unfortunately, the latest studies have purportedly revealed a strong genetic component for YEARS. One of the very latest studies indicates spontaneous mutation of otherwise healthy genes showing promise as the cause for autism. Why is it no one stops to ask, but what is it that is causing the gene mutations in the first place???
Sam's MAMA
The current autism epidemic cannot possibly be caused by genetics. First of all, typically, the children are normal for at least the first two years of their lives. A genetic condition would be present at birth.
Second, it's happening way too fast. A fast genetic shift is a 1% increase over 100 years, not the 714% increase in nine years we're seeing with autism.
Third, there's no such thing as a genetic epidemic.
I know of no study that proves there is no link between thimerisol and autism, at least not of one that wasn't funded by a vaccine manufacturer.
Many illnesses with a genetic component do not display symptoms at birth.
Back up, Pyrum. It's far from certain that there is an autism epidemic. Do you know the difference between incidence and prevalence?
It's not always possible to prove a negative. For example, can you prove you are not paid by the pharmaceutical industry to write things that hurt the credibility of vaccine opponents? Of course you can't. But if I were to make that claim, then it would be incumbent on me to prove it. And when I can't, it would be idiotic for me to come back with "Oh, yeah! Can you prove you aren't?"
See how that works?
Have fun with your pitchfork Kim. Autism Speaks and the Wrights are doing a great job raising autism awareness and generating funds for autism research.
Keep up the good work Bob, Suzanne and Autism Speaks. It is nice to see someone doing something constructive for the cause of autistic people and their families.
ARNB, you're entirely correct. The Wrights have done an amazing job with generating awareness and funds. Can't argue with you there. The question is what are the funds doing for today's kids and where are the funds going?
If the worlds largest, best funded, most powerful breast cancer campaign generated awareness and then the majority of its dollars went to funding research on better padded bras for all the women who were to lose their breasts to the disease wouldn't you raise an eyebrow? And maybe a pitch fork?
KIM
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