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.
Follow Kim Stagliano on Twitter: www.twitter.com/KimStagliano
I'm with ya, girl!
After my son's regression into autism, I took his medical records out and sat down and made a chronology of his growth and included his doctors vists, his immunization record; and the number of times he was put on antibiotics.
My son, born at 7 lbs. 3 oz., doubled his weight in 2 months; at which time he received 4 more immunizations. During the next 4 months he received 7 more shots. At one year old he received the MMR, Polio, HIB and Varivax. Later that day he suffered head swelling, had a fever was lethargic and was screaming at the top of his lungs. I took him back to the doctors and they put him on antibiotics. Three months later, he received his DPT; and again, he had the same reaction as before. Terribly lethargic, suffered head swelling and severe pain.
My mother's intution told me it was the immunizations. Danny's doctor, who that day gave me a paper listing adverse reactions (which Danny exhibited), told me "Oh no, it must be an ear infection". This was no ear infection. (I have 4 other children and I knew ear infections). Once again, his doctor prescribed antibiotics. As a matter of fact he was on antibiotics 5 more times during the next 3 months for unexplained skin eruptions.
My son gained only five pounds in one year. He started to loose his language ~ the nightmare was just begining. His then Pedi was never concerned about Danny's progress until this time. He was a part time pedi and part time Director of Developmental Evaluation at Children's Hospital who evaluated autistic children.
I have solid proof as to what happened to my son. Being a Rhogam Mom, my Danny had an even higher exposure to thimerosal than others.
Yes, I most certainly can prove it; people just have to stop blabbering and start listening.
Jean Whelan
The issue here is that you have to actually read these studies, instead of merely listening to others who claim:"there is no science, there is no epidemic". Last year I had my son's IEP meeting with 6 of his non-believing teachers. We debated about the mercury issue and they told me there was no science. I pulled out my huge binder full of science and Danny's test results, excretion tests, etc. and not one teacher was interested in looking at it. It's a shame that so many of our childrens' teachers are uninterested in the science. They tell me there is none and I say "prove it".
Keep up the excellent work, Kim! You are doing an outstanding job!
It is like looking for the lung cancer gene while ignoring the obvious environmental effects of nicotine in cigarette smoking.
Our government “health†agencies are looking silly these days as they cling to the illusive autism gene theory while ignoring the constellation of illnesses our toxic “autistic†children are suffering from.
In January 2004, The CDC put out an “Autism Alarm†( I guess they are admitting they are “alarmed†about the fast rising numbers of this epidemic). In the Autism Alarm (http://tinyurl.com/2axu2a), the CDC states “Autism is prevalent, 1 in 6 children is diagnosed with development disorder or behavioral problem… 1 in 150 children are diagnosed with autismâ€â€¦. 4 out of 5 are boys…
While the government is throwing millions down the drain looking for the autism gene, our population of healthy, typical bright boys is quickly becoming extinct!
Suzanne Wright we need your voice now more than ever! Please help those who are positioned to do research into the environmental causes, most importantly neuro-toxins such as aluminum, mercury and the toxic compound thimerosal. We know these children had massive exposure via injection in utero and as infants.
Kim, Keep up the great work and Soldier On, my friend,
LaniersMom
with her concerns over Autism Speaks' total lack of effort on thimerosal. See, e.g.:
http://www.autismvox.com/katie-wright-does-not-speak-for-autism-speaks/
Suzanne and her husband posted the following on the Autism Speaks website:
"Katie Wright is not a spokesperson for Autism Speaks. Our daughter's personal views differ from ours and do not represent or reflect the ongoing mission of Autism Speaks. Her appearance with David Kirby was done without the knowledge or consent of Autism Speaks."
As to research on any other environmental triggers, including non-vaccine mercury, Autism Speaks' record speaks for itself, as disclosed in their recently-funded 52 research projects.
"Identification of UBE3A substrates using proteomic profiling in Drosophila" - $120,000 for 2 years.
“Mutations in the UBE3A gene cause a mental retardation disorder known as Angelman syndrome. This project will use the genetic power of fruit flies to identify genes regulated at the protein level by E6-AP. Several techniques will be used to generate artificially high levels fly Dube3a protein in fly heads. The investigators will then use protein sequencing (proteomics) to identify those proteins affected by changes in the levels of Dube3a protein.â€
-- Fruit fly heads!? And Angelman’s, caused by a specific maternal gene deletion and characterized by severe mental retardation, unsteady movements, and a sociable disposition, is not autism! Yes, it does appear that the medical-research-industrial-complex is willing to throw their hard-earned research money at any proposal related to genetics or imaging to the exclusion of anything related to mercury or biochemical biomarkers.
So this is what gets funded, to the exclusion of efforts examining the “array of neurotoxic environmental exposures,†“identifying individuals with increased mercury susceptibility,†and “distinguishing autism subgroups with distinct [biochemical] etiologies†that they purport to believe merits investigation in their “official†mercury policy statement.
No wonder the medical-industrial-complex has no idea what causes autism, nor any treatments to ameliorate its effects. Nor will it in the future with this trajectory.
And now that the medical-research-industrial-complex has captured Autism Speaks, nothing of any significance is going to ever come from the largest private fundraising efforts.
Looks like Katie Wright was right about the hijacking of Autism Speaks’ horde.
Why such fear of research on mercury, sulfhydryl-reactive metals, and cellular oxidative-stress?
What a shame.
"Multisensory Processing in Autism" - $434,622 for 3 years.
“In this study, Dr. Essik will use psychophysical techniques to study sensory processing both within a sensory system (the system for touch) and between the touch and visual systems. He will assess sensory sensitivity in groups of adults with and without autism for several types of stimuli [and utilize] functional magnetic resonance imaging.â€
-- Talk about “touchy-feely†research! How is this going to rationally aid either the prevention or the treatment of autism?
"NrCAM, a Candidate Susceptibility Gene for Visual Processing Deficits in Autism" - $450,000 for 3 years.
“Abnormal visual processing may be causally related to ASD deficits of eye gaze and interpretation of facial expression. Dr. Maness will study mutant mice lacking NrCAM to investigate the hypothesis that NrCAM mediates formation of the precise connections between the axons from the retina and their targets in the brain.â€
-- Retinal connection genes as the cause of autism? Also, from the results of Psychiatr Genet. 2006 Dec, 16(6):251-7 : “We found no association between single nucleotide polymorphisms of NrCAM and autism in our large cohort…â€
"Genomic Resources for Identifying Genes Regulating Social Behavior" - $120,000 for two years
“One species, the prairie vole, forms strong social bonds, while the other, meadow voles, does not. Previous research has suggested that the difference in this social behavior may be due to a “microsatellite†region of genetic material that is located outside the area which transcribes the gene for the peptide hormone receptor avpr1. [R]esearchers will create markers for these microsatellites as well as establish different strains of voles which show differing levels of social behaviors.â€
-- Are they willing to throw their hard-earned research money at any genetic proposals – to the exclusion of anything related to mercury or biochemical biomarkers?
Autism Speaks recently announced new funding for 52 new “biomedical†research projects at a total value of over $15.2 million. See: http://www.autismspeaks.org/science/programs/2007_grants.php
Not a single one of those 52 newly-announced research projects has anything to do with examining a possible role of mercury/heavy metals in autism - or even of attempting to disprove any role. Not a single one. They didn't even throw you a bone.
Instead, nearly all the funding went to make-work projects of the traditional medical-research-industrial-complex that, even if successful, would have no significant effect on future autism prevention or treatment.
Here is a sampling of the research that Autism Speaks chose to fund:
"Neural Correlates of Social Exchange and Valuation in Autism" -
$450,000 for 3 years.
“Hyperscan functional magnetic resonance imaging (h-fMRI) i.e. the simultaneous measurement of brain activity in two socially interacting people, is an important development for autism research. Specifically, a social exchange task called an iterated Trust game and h-fMRI will be used to characterize neural and behavioral responses to social signals in individuals with autism as they participate in dynamic social exchanges with a human partner.â€
-- Let’s spend half-a-million-dollars using expensive high-tech toys to watch the brains of people playing games! That’ll help prevent and treat autism! That is “strong support for a research agenda on environmental exposures and autismâ€!
"Automated Measurement of Facial Expression in Autism: Deficits in Facial Nerve Function?" -$450,000 for 3 years.
“This project will utilize automated facial analysis software to compare how, when, and to what extent 20 four- to six year-old children with autistic disorder, 20 children with developmental disabilities, and 20 typically developing children produce facial expressions.â€
-- Do autistics produce facial expressions differently than normal kids? Now that is a burning question that will lead to prevention or effective treatments, won’t it? I will bet that pregnant women and parents struggling with autistic kids just can’t wait for the results of that one.
My advice: stop looking for quick answers. The longer you fight reality, the worse off it will be for you and your kiddo.
The omnibus hearings? The plaintiffs theory of the case was MMR and only tangentially thimerosal. Again, shows your cognitive dissonance. And mercury/sulfhydryl-reactive metals/oxidative stress is not thimerosal.
Finally, genetics alone is the "quick answer." Gene-environment-immunology-(embryology?virology?) interactions are the complex reality and it is going to take a good deal of funding to tease out the answers.
It would obviously be a humongous waste of resources to continue to look at this made-up connection between thimerosal and autism.
Those here who continue to waste my time and yours with their ridiculous genetic tales are either unable to read the scientific literature regarding toxic exposure or do not understand the autism that we are even discussing. The metals/Hg, bacteria, viruses, and inflammation within the children speak louder than them or Suzanne Wright.
Teresa
"The metals/Hg, bacteria, viruses, and inflammation within the children speak louder than them or Suzanne Wright."
My Mom is also a social butterfly. Healthy, happy As was my Grandma Yoli (a doll, God rest her soul.) My Dad was a dentist and handled (drumroll for effect please) MERCURY. (Hello? Is this mike on?) I spent the first five years of my life in the house where his office was located. I was born in and lived in a town that was founded on jewelry companies. Jewelry = metal. And a mile from my house from age 6 - 22? A metals Englehard plant now closed down and every house across the street RAZED to the groud. Same property as the Drive In, where, as a pretty teenager, given my "sociability", I spent some time smooching boys while watching "Kentucky Fried Movie." (I'd buy THAT for a dollar!)
I am full of mercury..... I've done the testing. Testing you probably believe is bunk, right? So is it my fault or isn't it?
For me it's not a problem. I can speak, write etc. For my precious children..... And please, do not mess with my kids. I work hard for ALL our kids with autism. Yours, mine and everyone's. I do not discriminate between camps when it comes to the children. Dad wants to get into it with me? Mom who blogs? Fine. But the kids? I would shower love and care on every one of your children. And if putting my ass on the line and taking your speculation means your kids might benefit down the road? I'm happy. THAT'S who Kim Stagliano is.
PS Autism is not a mental disorder. You must be back in the 50's. It is first and foremost an autoimmune disorder affecting the gut. Do read the recent article in Discover magazine so you can be well informed.
A non-mutant grandma in South Carolina
My son did not have autism at birth. Vaccinations took away his ability to communicate with me. He is sick, his stomach is in constant extreme distress and it correlates entirely with how his behaviors, attention and connection will be on any given day. How do you explain how sick these kids are? How toxic they are? Predisposition coming from environmental toxins and changing genetic make up, maybe yes. We should clean up the environment that lead us to predisposition but thimerosal is what took my son away. It is why he is sick.
Stop making excuses for no epidemic, no connection to a neurotoxin for a decline in a child's neurological abilities. If you are a "parent" of a child with autism and are happy with your answers, good for you. Throw yourself a party for your ability to have your peace. But please don't attack those who are searching for answers for their sick kids.
My child cannot have a conversation with me and he shows me every day that he is physically ill. Autism for MY son is a Whole Body Autism stemming from his toxic vaccines. I know him, Kim knows her kids, we fight for them how We choose as parental advocates.
Kim has 3 children with ASD and she deserves some respect and admiration for her daily fight and search for answers. Not insults directed at her grandmother of whom you have never met. And I just had lunch with my 86 year old perfectly healthy Grandmother who still tends to her garden, has ladie's lunch on Tuesdays and other than a few vitamins only takes 1 medicine for blood pressure. She blows everyone away with her winning personality and stories of history. Blaming Grandma is the biggest joke yet.
The total number of children in special education, relative to the whole population of children, has not changed significantly over time in the US, particularly if you look at somewhat older cohorts (so that early diagnosis is not a factor).
I don't know enough about Suzanne's household set up, but anyone closely involved with autism knows that 'time' or rather 'free time' is a very precious commodity.
If we're all patient, then before too long there will be another study published that will tell us that more research is needed.
In the meantime, I'm going to try and use my time wisely.
Best wishes
If this is not possible (and I HAVE to believe it will be eventually), I am pleading with anyone who has input as to where autism funds are channeled. Please directly help with supports in the home and school. Families and public school systems are already stripped bare of resources and stretched beyond the point of being effective. When the ease of the burden is lifted even a bit, it surely feels a whole lot better!
For those of you that weren't there the entire day was filled with information on mercury toxicity, thimerosal, and what it does to the body. If none of you has actually read studies on WHAT THIMEROSAL DOES TO THE BODY you will continue to be uninformed and swallow whatever mainstream media, pharma and government feeds you.
Gene mutations can be caused by mercury and gene mutations have been happening for generations. Gene mutations can NOT explain the rise and current national health crisis of autism. It can only explain predisposition. My son had reactions to every vaccine, the components of the vaccine took away the child he was born as and brought about an extremely toxic sick child.
ABA does not help unless I am helping his immune system at the same time. Then ABA or other therapies are essential to help him catch up. These children are sick and they need to be treated for their physical ailements. Bouncing off the walls after a child eats something like cheese puffs it is obvious that the cheese puffs were the trigger. Why the heck aren't these kids automatically tested for their allergies, mercury toxicity through porphryn enzyme testing, gut diabosis, etc., etc. when so much evidence is pointed to a whole body autism.
We are wasting time and endless amounts of money to look at only genes and educational services. Without proper medical help for these kids our society will be full of a generation of children with Autism who grew to be adults who cannot take care of themselves. We have the chance to change the outcome by putting monies into medical therapies that are already helping thousands of children. AS needs to contact ARI and DAN, Dr. Amy Yasko, Dr. Andy Cutler, Homeopaths, and naturalpaths and find out every avenue that is working for some children with Autism and put money towards those treatments. And legislators need to remove mercury entirely from all vaccines and set a safer schedule. Then and only then will we be doing anything that is worthwile for these kids.