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Katie Wright on The Congressional Autism Briefing April 28, 2012- Mission Impossible

Posted May 01 2012 12:00am

Useless Managing Editor's Note: Dan Olmsted also provided his review of this Autism Speaks/CDC meeting in his post titled: Mush From the Wimps: Autism Speaks and the CDC Take Over Capitol Hill as Rep. Smith Bows Out

By Katie Wright

You have to see this to believe it. No transcript could do this briefing justice.

Thank God Beth Clay was there and filmed the briefing on her phone. I had been told that it would be too difficult to broadcast the briefing. Beth used her iphone and then put the footage on Facebook, not complicated, not expensive.

OK this was a joint CDC Autism Speaks briefing on the new autism prevalence numbers. Listen, I am sure Dr. Marshalyn Yeargin-Allsopp and Dr. Baio are nice people. The problem is that their understanding and conception of autism is both dated and deficient and, sadly, they are very bad at their jobs.

Yeargin-Allsopp is always polite with parents, but I am sorry to say she is incompetent. Yeargin-Allsop has been working in this job for almost 30 yrs and should have been fired 25 years ago. In the past 2 decades Yeargin-Allsopp has had access to tens of millions of dollars and could have been a hero to American families because she had the opportunity to change the face of autism and stop this epidemic. Instead Yeargin-Allsopp and her partner Coleen Boyle (another sad story) have spent decades devising and executing dreadful, wasteful research that has accomplished little. Just how many studies on parental age do we need? 10, 50, 100? Because we are on our way there! Yeargin-Allsopp has also authored a number of studies on autism and parental aggravation. This is very ironic considering the CDC is a tremendous source of parental aggravation. Let’s not forgot the studies on fat moms causing autism, either. CDC autism research is literally a treasure trove of nonsense.

The prevalence studies the CDC funds are a mess. When I imagine what goes on at the CDC autism offices I am reminded of the TV show “Hoarders.” I envision a giant messy office with papers up to the ceiling, files all over the floor, uncashed checks falling out of overstuffed cubbyholes, Christmas cards from Poul Thorsen, phones ringing off the hook but no one answering…And just like the on the “Hoarders” show, the CDC researchers are completely and totally disconnected from reality. The hoarders are terrified of change and angrily resist all outside attempts to help clean up their mess.

The CDC needs to clean house and clean house now. Congress has got to put a stop to the CDC’s autism research department’s waste of taxpayer dollars and progress free trajectory. When someone is in charge of solving an important problem yet does nothing but count the problem as the problem grows exponentially worse that = failure.

When asked why it takes so long to complete prevalence studies or why the CDC has made so little progress over the past 20 yrs there are always 2 answers, 2 very bizarre answers. Yeargin Allsop frequently states that they are actually doing a “great” job. Again, this woman lives in an alternate autism universe. All of Baio’s answers involved non- stop complaints that this is all “too complicated and too hard.” EVERYTHING is too difficult. You know what is hard? My friend Michelle Ioanardi is raising 3 boys with autism Dr. Baio, that’s hard. Another friend, Michael, has an adult son in the hospital, again, due to chronic infections, Staph and Strep, that’s hard. My friend Becky Estepp’s is raising two young boys, 1 with autism while her husband is on his fourth deployment to Iraq, that’s hard. Doing the best imaginable autism prevalence research for the CDC should not be a horrible chore, it is a privilege. Few of us get to do much meaningful work.

Dr. Yeargin-Allsopp appeared very scripted but behaved strangely during the briefing. Throughout the briefing Yeargin-Allsopp was happy, smiling and often giggling. I’m sorry maybe I missed something? I thought that the CDC was supposed to be talking about a tragic national health crisis that is robbing 2% of American boys of their ability to live a typical life? Yeargin-Allsopp and Baio displayed zero sense of urgency and almost no understanding of or sensitivity to the ongoing suffering of these ASD children and their families.

Then we heard from Dr. Andy Shih of Autism Speaks. Shih basically gave a recitation of numbers and many thank yous to Dr. David Mandel. Autism advocacy groups RARELY have the opportunity to speak in front of congressional staffers. When we do have that opportunity we need to make Congress feel our sense of urgency, make them understand how prevalent abuse and neglect of our children is on schools, help them to understand the physical pain so many children live with, how the near absence of biomedical treatment research profoundly affects our children’s future, how financial problems are destroying families. Yes informing the audience of the financial costs of autism is good but they are just numbers people forget if presented in isolation of emotion and the big picture.

A number of parents asked Shih about the need for more environmental research. Shih responded, “AS is very committed to environmental research, we are doing a number of studies on parental age and prematurity.” I had to rewind because I was sure I had not heard that correctly. Did Shih just cite parental age research as a primary example of AS’ environmental research? Please…when will they get it? According to Dr. Hertz-Picciotto about 3-5% of the ASD increase can be attributed to parental age and about 1% of the increase is due to prematurity. Can we please get back to reality and study actual environmental research rather than overhyped nonsense? Conservative autism researchers love the parental age bugaboo. It is super safe, parent blaming, and a life preserver to those desperate to avoid real environmental research.

When I hear AS families speak about their desire for more environmental research I hear them cite: research on the effect of multiple vaccines on the developing central nervous system of infants, adjuvant and preservative research, household toxins, fertility drugs, mercury emission research…You what I never hear parents asking for? You guessed it, more parental age research. According to PubMed there are 2,038 studies on the relationship between autism and parental age but AS and the CDC want to fund more? Why? In the same conversation Yeargin-Allsopp spoke about the needs to address gaps in research- like parental age. Do they not have access to PubMed at the CDC?

When a parent addressed the overfunding of parental age research, rather than investing in real environmental research poor Yeargin-Allsopp gave a tortured answer about toxins in general, why this is not her area of expertise and why the CDC is not studying toxins. It made no sense at all. Another parent asked Shih why he, Yeargin-Allsopp or Baio seemed to be hiding from the issue of vaccines and didn’t he realize that this is an important environmental issue? Shih demurred saying basically no comment. The parent responded saying, “what do you mean, you are co-presenting a briefing about the astronomic rise in autism but you are unwilling to discuss vaccines?” Basically yes. AS has got to grow a backbone here. Can’t we all walk and chew gum at the same time. Shih said he was only going to speak about the cost of autism; his role was not discussing environmental factors- other than that hot topic of parental age?

Towards the end of the briefing Yeargin-Allsopp spoke about all the progress the CDC has made. At that point a parent injected, “I think you are wrong. You are not getting better at what you do, you are getting worse.” Thank God someone said it! This Mom spoke for all 2 million families affected by autism. Vaccine or no vaccine research is there an ASD parent in our entire nation who believes that the CDC has made meaningful progress on autism research? When asked if the CDC is now declaring autism a national health emergency they answer was no.  When asked if the CDC considered autism a national epidemic (like obesity) the answer was, naturally, no. However, and I love this part, Yeargin-Allsopp said that the CDC “is doing their part!” I feel so reassured.

 

 

Posted by Age of Autism at May 09, 2012 at 5:46 AM in Katie Wright Permalink

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