By Anne Dachel
On Dec. 16, I went on a field trip to the mall with the special education students from our local public high school. I work with a freshman who is autistic. We had a good time shopping for a gift exchange and stopping for lunch. A number of these kids have autism and there were a couple of outbursts in the food court. I looked around at the shoppers having lunch and wondered what they were thinking when they heard these kids yelling in public.
Otherwise the day went smoothly and it was a good experience getting away from school. Several of the autistic students are seniors this year and as I watched them I couldn't help but wonder where they're going to be next year at this time.
When I got home and went to look at my emails, I saw one from "Dr. Geri Dawson, Autism Speaks" and the subject was "Finding the Answers." Dawson is familiar to many of us in the autism community because she's the Chief Science Officer at Autism Speaks and gets a lot of public attention, even testifying about autism on Capitol Hill. AS is considered the leading autism advocacy group in the U.S.
The letter started out personally addressing me by my first name but I'm sure thousands around the country got the same type of letter. Dawson told me that when she's asked why she became a scientist, she replies that it’s because she wanted 'to help people.'
Next she said, "Anne, as a member of the Autism Speaks community you're a crucial part of our science team's work to change the future for people affected by autism."
I was surprised because I don't remember ever signing on to be in the Autism Speaks community. Regardless, Dawson wanted me to know what they're up to. Mostly, she wanted me to donate to AS. And my donation would make a difference because..."your support now will determine whether we can keep making progress toward potentially life-changing findings in 2010, or fail to."
And in bold letters I read, "Make sure we can keep finding the answers that will unlock the puzzle of autism -- one study at a time -- by submitting your tax-deductible donation to Autism Speaks now."
Then she told me about what AS is doing to solve the autism mystery.
"I could pretty much talk your ear off about the exciting work our team has done in 2009, but let me highlight just a few recent scientific discoveries -- and how we're working to translate discoveries into actions that will truly improve the lives of people with autism.
"First, did you know that Autism Speaks funds the largest private genetic database and the largest genetic collaboration -- the Autism Genome Project -- in the world? Our investments in these programs are paying off.
"This year, the scientists who are part of the Autism Genome Project discovered a number of novel autism susceptibility genes that are helping us understand the biological basis of autism. In fact, these findings were recently featured by TIME magazine as one of the top 10 medical breakthroughs of 2009.
"Using information from these genetic discoveries, we're funding a clinical trial to test a new medication that targets the pathways in the brain that these genes are disrupting."
Dawson also told about research into "the immune system's role in autism" and the link to the page to donate was again provided.
She wrote, "Every day we're making progress in the search for answers. These discoveries, and our scientists, depend on you.
"Please do your part today to keep our work going by making a tax-deductible donation to Autism Speaks.
Finally she ended with, "We've been on the cutting edge in 2009, and we'll stay there in 2010 -- with your help."
"Thank you, and happy holidays!
"Dr. Geri Dawson, Chief Science Officer, Autism Speaks"
I can only imagine the reaction of many people I know with autistic children. When has AS ever addressed autism as a national health crisis? When have they ever openly or honestly focused on the claim by thousands of parents and more and more doctors, that vaccines are damaging our children?
If this had come just from Autism Speaks, I would have ignored it, but it had Dawson 's name on it. Lisa Jo Rudy on her autism blog on Sept 10, 2009, had the story, Is Autism Speaks Mis-Spending Its Money? Your Opinion Requested (HERE.)
Rudy wrote, "The highest paid employee listed, their Chief Science Officer, Geri Dawson, was compensated $644,274."
Sept 10, 2009, Disability Scoop ran the piece, Top Earner At Autism Speaks Paid More Than $600,000. Michelle Diament said, "The organization’s chief science officer, Geri Dawson, received $669,751 in total compensation in 2008 including $269,721 in relocation expenses to move her family from Washington to North Carolina, according to Autism Speaks’ tax filing."
Incredibly, here's a woman making over half a million dollars a year supposedly searching for answers about autism and she was asking me and lots of other parents for money.
Go to the website for Autism Speaks and you'll find the question posed, "What causes Autism?" And the short answer, "The simple answer is we don't know."
Autism Speaks doesn't know the answer right now, but they're on hot on the trail of the gene/genes that cause autism. Meanwhile on their website, we read, "NEW STUDY INDICATES AUTISM AFFECTS 1 IN 91 CHILDREN, 1 IN 58 BOYS. AUTISM PREVALENCE FIGURES ARE GROWING. WE NEED ANSWERS."
Please note, "Autism prevalence figures are growing" is the code phrase for "We don't know if more kids actually have autism. It may be just better diagnosing and greater awareness." There's no need for any real concern unless the actual incidence of autism increases, and no one admits that. Autism Speaks isn't on the news every night sounding an alarm about autism. Over one percent of U.S. children now have autism, almost two percent of boys. It never used to be that way. It hardly makes sense that AS can direct so much money into gene research when there's never been a genetic epidemic in human history.
I thought back to Geri Dawson's testimony last summer in Congress before Senator Harkin's subcommittee. (HERE This link also has a 4 minute video clip of her testimony.)
There Dawson publicly stated that autism research is still greatly UNDERFUNDED, yet she testified that neither the vaccine preservative thimerosal nor the MMR is responsible for the "large increase that we've seen in prevalence. Our position at Autism Speaks is one of very evidence based. We're really agnostic with respect to whether vaccines play a role or not. But we believe that by addressing parent's questions, that this will increase confidence in the vaccine program and will ultimately lead parents to be more likely to vaccinate their children, which we think is going to be critically important for public health."
It was an interesting choice of words. "Agnostic" means "somebody denying something is knowable: somebody who doubts that a question has one correct answer or that something can be completely understood." Did Dawson mean that we won’t be able to know if vaccines cause autism? Did she mean that she doubts that autism is caused by vaccines? I'm not sure.
Her farcical testimony was a big public vindication of the vaccine program and it was clear that any research that AS does, genetic/environmental, WILL NOT INCLUDE VACCINES.
This is what the Autism Speaks website said this about her congressional testimony: "She emphasized that we have come to understand that there are many different causes of autism, and that any one cause will likely only explain a minority of cases. Dr. Dawson stressed that large scale studies and databases, such as the Autism Genetic Resource Exchange, will be important for discovering the genetic and environmental risk factors for autism, and their interaction. She noted that it is now possible to screen for autism at 18 months of age and that clinical trials testing interventions for toddlers with autism are being funded by Autism Speaks."
A short part of the testimony of Dr. Thomas Insel, head of the IACC, was at the end of the Autism Speaks clip. He made this absurdly vague prediction: "There will be a time in the future that we will have a much better understanding of the environmental causes of autism. There's probably something out there that is truly important that we need to be focusing on very quickly and move into very quickly. And the hope is that the kinds of studies that Dr. Dawson suggests, that are agnostic, that look broadly at a lot of prenatal factors, also include some post-natal factors, we'll begin to see a pattern emerge."
I was struck by the phrase, "There will be a time in the future...." And I half expected him to add, "...in a galaxy, far, far away."
On the Autism Speaks website the vaccine studies are talked about by
"Overwhelmingly, these studies have not found evidence for a causal relationship between either thimerosal or the MMR vaccine and autism. At the same time, some parents have reported that the appearance of autism symptoms coincided with vaccination, and thus have advocated for more research on the potential role of vaccines in autism. As an organization that is committed to understanding all the potential causes of autism, we cannot dismiss the concerns of parents, especially since autism may be caused by distinct combinations of genetic and environmental factors that may each account for only a small percent of overall cases. Although coincidence cannot be mistaken for causality, Autism Speaks believes that parental concerns merit thorough investigation."
Dawson neatly pretended that only the misinformed parent links vaccines to autism. She made no mention of top national experts like Dr. Bernadine Healy, former head of the National Institutes of Health in the U.S. and Dr. Peter Fletcher, former Chief Scientific Officer in the U.K. Neither of these experts is in agreement that vaccines don't cause autism.
She also said, "The amount of funding we [Autism Speaks] are devoting to research that is relevant to vaccines is only a small percentage of our overall research budget, about 2%. The bulk of our $33 million in research funding in 2008 is focused on identification of a wide range of genetic and other environmental risk factors, biological mechanisms, diagnosis and early detection, and discovery of effective treatments."
So as another generation of children is lost to autism, AS claims to be on the cutting edge of autism research. They just need more money from me.
The truth is, it's a huge slap in the face for me to get an email with the name of a doctor getting over half a million dollars in annual income while countless thousands of children become autistic right before her eyes. Parents of autistic children are going bankrupt trying to get help for their children and more and more autism floods our schools. To have Dawson write to ask for money when her worthless grandstanding nets her a fortune, is obscene.
Autism Speaks has no right to say anything. They insult me and everyone else in the autism community. They certainly have no right to pretend that they’re doing something to help the autistic high school students I spent the day with.
On Friday, Dec 18, the CDC announced the new autism rate of one in every 110 children, one in every 70 boys. Dr. Dawson was cited by a number of news sources.
WebMD: Autism Jumps 57% in Just 4 Years (HERE)
Dawson: 'Two decades ago we were looking at a prevalence of one in 5,000 children. Now we're looking at one in 100. That really is a staggering increase. The question is what will it take for the federal government to begin to respond to this crisis.'
CNN Study: 1 in 110 U.S. children had autism in 2006 (HERE)
"Geri Dawson, chief science officer for the advocacy group Autism Speaks, said this report validates early estimates of how many children are affected by autism.
'We now have firm evidence that autism spectrum disorders affect a staggering 1 percent of children, and this increase cannot be fully accounted for by
broader diagnosis or earlier diagnosis.' "
BusinessWeek: One in 110 U.S. Children Has Autism (HERE)
Dawson: 'If you look back over the last two decades, you see an increase of 600 percent in the prevalence of autism spectrum disorders.
'The important call to action is that we need answers to understand why we're seeing this staggering increase.'
Amazing comments from someone who's spent years looking for the genes that cause autism and telling parents that they are wrong.
Finally, on Fri I also received an email from Mark Roithmayr, President, Autism Speaks. He cited the new rate and told me it's the time to donate. He only asked for a small
donation. "Pitch in today with a tax-deductible contribution. Your $5 donation will go straight to our research and advocacy efforts."
Ginger Taylor reported about Autism Speaks and Roithmayr on her blog, Adventures in Autism. Taylor wrote, "The President Mark Roithmayr, just received a 5 year contract for about $2,000,000 including bonuses with no prior background with autism."