Autism Speaks caught my attention recently. I watched a Public Service Announcement from AS featuring American fashion designer Tommy Hilfiger and his daughter who has autism.
It actually says nothing about autism but it does remind us that a lot of kids have the disorder and "early diagnosis can make a lifetime of difference." The fleeting seconds at the end where we actually SEE AN AFFECTED CHILD is a sweet feel-good moment. All in all, it’s a nice tribute to Tommy Hilfiger but contains nothing of substance about autism--so much for any parents who might actually want to learn something about the disorder. AS’s message is that autism happens-- the best we can do is to find it early.
Autism Speaks has been around since 2005 and it raises millions of dollars with a lot of it from local fund raising by trusting parents. AS gets national attention in the press as America’s largest autism science and advocacy organization. Their website announces that they are "dedicated to funding research into the causes, prevention, treatments and a cure for autism; increasing awareness of autism spectrum disorders; and advocating for the needs of individuals with autism and their families."
Autism Speaks regularly sends out a report on "Autism In The News." There you'll see all kinds of stories about autism including a couple of recent ones again mentioning Dr. Wakefield's "discredited vaccine-autism report." Autism in the News generally avoids the heated controversy over vaccines and autism.
I also recently got an email with the annual letter from Autism Speaks’s Chief Science Officer Dr. Geraldine Dawson. Dr. Dawson reviewed what 2011 was like for autism. She started out telling us about the genetic links and the fact that a 2011 Stanford University looking at identical and fraternal twins showed that the environment was a greater factor in the development of autism than genetics. Dawson wrote, "This strongly suggests that environmental influences play a significant role in autism--prenatal influences being among the most likely. This seemed to have been a big surprise to Dawson who wrote that previous to the 2011 study, “it was taken as fact that the causes of autism were almost completely genetic.” (Are we to believe then that until 2011 Dawson didn’t believe there’d been a real increase in autism, since it’s impossible to have a solely genetic epidemic?)
In addition, Dawson praised all the research Autism Speaks is funding, which to the outsider looks like they're leaving no stone unturned. With all these studies going on it's a mystery why, when it comes to what we actually know about autism, it's next to nothing. There is still no known cause, cure, or effective treatment for autism. There’s nothing that mainstream medicine can tell an expectant mother so that her next child doesn't also end up on the autism spectrum.
Dawson noted that all these studies have a "great potential for deepening our understanding of autism's causes.” It seems that when it comes to autism, we're always waiting for answers that are years down the road.
Dawson cited studies AS is funding that are looking at how toxins relate to autism. Sifting through the studies there are a couple that I was able to find. One was a study of air pollutants and autism and another with a vague description about pre and post natal exposures to "environmental factors."
The truth is while AS likes to portray themselves as being on the cutting edge of autism research, they will consistently focus on anything other than vaccines as a trigger. What you won't find among the studies being funded by AS is a comparison of fully-vaccinated and never-vaccinated children to see if both groups have a one percent autism rate. You also won't find a study looking at the thousands of children whose parents report they were born healthy and were developing normally and who suddenly and dramatically changed, lost learned skills and regressed into autism. On their website, Autism Speaks tells the public that studies haven’t shown a link to vaccines and parents should have their kids vaccinated. There’s this vague acknowledgement: “It remains possible that, in rare cases, immunization might trigger the onset of autism symptoms in a child with an underlying medical or genetic condition.”
Dawson was proud of the research that AS funded showing a relationship between low birth rate and the development of autism and the Korean study that showed that if you look closely enough, you can find even more children who have autism. The Korean study found an autism rate of one in 38 children in Korea. Dawson wasn't alarmed about this. She said, "The methods used in the South Korean study, which involved direct screening of a total population, identified many previously undiagnosed children." Dawson fully expects that with better screening methods we too could have an even higher rate of autism among U.S. children. This wouldn't mean more children have autism. It'll just be even better diagnosing. Dawson wrote, "By contrast, the CDC's current prevalence estimate of 1 in 110 children is based on children identified through therapy records, which may underestimate true prevalence."
Dawson outlined the long road ahead. "As we continue to sleuth the causes of ASD, we are also learning more about its underlying biology in ways that point toward potential new treatments for the core symptoms of ASD." The phrase "sleuth the causes of ASD" doesn't sound very encouraging. It doesn't have an energizing ring to it like we're on the verge of big discoveries when it comes to autism.
Dawson did note that millions of dollars are going into research to come up with drugs to treat autism. "This public-private partnership will provide $55 million over 5 years for the development of autism medicines, most of this funding coming from the European Union. This is the largest single research program in the history of autism science."
Dawson was hopeful about even earlier diagnosing of autism. "Fortunately the past year's research also delivered validation of a practical method for autism screening at the 1-year, well-baby checkup." Still promoting the idea that kids are born with autism, she wrote, "As we learn to recognize autism earlier and earlier, it becomes increasingly important to offer families effective early interventions appropriate for even young infants."
Even though experts have long claimed that all the autism everywhere is the result of all the greater awareness by doctors, Dawson said it's just not good enough. "Unfortunately, although we now have validated methods for recognizing autism symptoms in infants, the average age of ASD diagnosis in the US remains close to 5 years."
Dawson ended her annual message on an upbeat note. "I hope you are as excited as we are about the discoveries that are being made and the wide range of research we are funding, all dedicated to improving the lives of individuals with ASD and their families. The pace of discovery is rapidly increasing, and our fellowships are bringing some of the brightest scientists into the field."
I'm at a loss to understand why we should think anything will change when it comes to autism. The science is all over the place looking for anything that might be associated with autism with nothing conclusive ever showing up. More and more schools have less funding to provide real help for children with autism and no one is prepared for the disaster about to hit communities and states when hundreds of thousands of children age out of school with no place to go.
I was curious about what Dr. Dawson had to report last year in her annual message compared to the one for this past year.
The 2011 letter had the same smiling photo of Dawson, which is good when the topic is something that is a health care nightmare for countless families. At least the top expert should look hopeful about autism. Last year Dawson also cited all the ongoing studies focused on all kinds of things associated with autism from GI issues and encephalopathy to mitochondrial dysfunction. In the end, nothing is conclusive and there's no speculation about the role vaccines may play in these problems.
In both the 2012 and 2011 annual letters Dawson ended on a hopeful note.
2011: "I've been a scientist and clinician working in the field of autism for decades now. During all these years, I've never been more optimistic about the scientific breakthroughs that we will witness in the coming years. More than ever before, we have the best scientists in the world focusing their attention on autism. ..."
2012: "I hope you are as excited as we are about the discoveries that are being made and the wide range of research we are funding. ...The pace of discovery is rapidly increasing, and our fellowships are bringing some of the brightest scientists into the field."
If you're like me, you regularly see stories in the news announcing that autism has no know cause, cure, or prevention. Autism Speaks's symbol for autism is a puzzle piece. The most common adjective used with the disorder is "mysterious." I can't see anything coming from Autism Speaks that tells us anything of significance about autism and I don’t see Autism Speaks addressing autism as a national health emergency. It seems we have all the time in the world “to sleuth the causes.”
Geraldine Dawson's annual letter didn't include the Baltimore Sun story from this past July, "We don't know enough about childhood vaccines--Researcher asks: Are 36 doses of vaccine by age 2 too much, too little, or just right?" The piece questioned how officials could dismiss vaccine safety concerns when so much safety testing is missing.
Dawson didn't bring up the stunning report on HDNet TV and on Fox News where they exposed the fact that while health officials continue to tell us studies show no link between vaccines and autism, the federal government has paid out millions of dollars for compensation for vaccine injuries that included autism. Seeing these children who were born healthy and were suddenly and dramatically affected by their vaccinations should give us all pause.
Last year Dawson was also asked to appear on the Dr. Oz Show when the topic was vaccines and autism. Dawson refused. Her position was explained on the AS website in a piece titled, It’s Time to Change the Conversation February 17, 2011.
"Autism Speaks recently declined an invitation to participate in a Dr. Oz show. In reviewing the pre-taping materials, it was clear that the program’s major focus was again on the vaccine debate, a debate that has been addressed multiple times, without resolution, and more importantly, a debate that prevents other equally important topics surrounding autism from being discussed. Last month, in a letter to the editor published by The New York Times, Autism Speaks’ Chief Science Officer Geraldine Dawson, Ph.D., said it is time now to focus our attention on the future and on the real problem: We still need answers to too many questions regarding causes and treatments for autism and we need to address the generation of a half million adolescents with autism who are about to enter adulthood without adequate supports.
"Autism Speaks has consistently stated that children should be vaccinated to protect public health and the health of the individual child, and has urged families to develop a trusting and collaborative relationship with their pediatrician on all health matters including vaccination. While the Dr Oz show certainly makes for ‘Good TV,’ this was not the televised conversation in which Autism Speaks believed it could make its most valued contribution on the science of autism. When ‘Good TV’ presents ‘Good Science,’ it makes an incredible difference for the families who struggle with autism and this is where we hope to be involved in the future.”
This “it’s time to move on” attitude sounds strange coming from an organization that hasn’t given us any real answers about autism.
If Autism Speaks were being honest about what’s happening in the real world, they would present things a lot differently. Imagine Tommy Hilfiger on a PSA that concludes with a scene of a mom changing the diapers on her 14 year old autistic son. How about Hilfiger with a child with autism having a meltdown at the grocery shop? Or imagine a 10 year old autistic boy having a seizure at school. This is the side of autism that countless thousands of families live with everyday. It's hard to smile sweetly when talking about children like this. This is the scary side to autism.
Two things have come up recently involving Autism Speaks that also got my attention because they directly connect AS with the vaccine controversy.
The White House just announced that President Obama was appointing AS Executive Vice President of Programs and Services Peter Bell to serve on the President's Committee for People with Intellectual Disabilities—the committee which advises the President and Secretary of Health and Human Services on issues that impact people with intellectual disabilities and their quality of life. This appointment seems to confirm that AS speaks for the autism community.
In response to Bell’s appointment surprising charges have been made. Biggovernment.com soundly attacked Obama’s choice in the piece, “Does this Obama Appointee Believe Children’s Vaccines Cause Autism?”
“Did you know your recent appointee to the President’s Committee for People with Intellectual Disabilities, Peter Bell of Autism Speaks, has a long history of supporting pseudo-science that can harm children? It’s true; Autism Speaks’ Executive Vice President of Programs and Services supports the widely debunked and incredibly harmful theory that vaccines cause autism.”
It’s amazing that Autism Speaks, an organization that seems to have only recently discovered that environmental factors are more important than genes in determining who develops autism, has an executive officer who’s known for believing that vaccines can cause autism. Maybe Bell won’t continue the pretense that regression following vaccination is just coincidence.
Even more confusing was a story on Autism Speak’s Autism in the News on January 13. They included the story, 7-Year-Old Vermont Girl Dies After Flu Vaccine, with a direct reference to vaccine damage that included autism.
“Pressured by public health to do what is right and protect your child from preventable diseases, parents’ hearts have been broken over and over again as children develop autism or other disabilities as a result.
“Even those incidents are relatively rare, except perhaps for autism, they happen to families. Even though the link between autism and vaccinations has not been proven, parents know. The same holds true for a tragedy involving the flu vaccination in Vermont.”
Autism Speaks’s Chief Scientific Officer may avoid any reference to vaccines and autism in her annual update, but the issue can’t be ignored. AS needs to listen to parents and get serious about addressing this health care emergency. I don’t know how many more years Dawson’s annual letter with a photo of the smiling doctor is going to have any credibility as more and more children are lost to autism.
Anne Dachel is Media Editor for Age of Autism. Subscribe to her newsfeed at AnneDachel.com