Having a child with autism can be extraordinary isolating due to the intense hands on rehabilitation. For many years I have watched important hearings, conferences, and meeting pass by while I was submerged in the fight to bring my son back from vaccine injury. Not this time! Fortunately, due to my son’s progression and the support of my husband I was able to attend the 2nd Congressional Oversight Hearing regarding autism and it’s affiliated environmental triggers. As I attended and testified to whoever would listen I felt the love and support of all those that could not make it. Our growing community is well connected by the common struggle and overwhelming frustration of government inaction. It is a rare to have the NIH and CDC under oath, and have the ability to ask direct questions regarding autism and vaccine injury.
9:30AM Private Meeting with Senator John Barrasso (R-WY)
I was privileged to have a 20-minute conversation with Senator Barrasso M.D. at the Dirksen Senate Office. I explained my five immediate Federal actions that could help facilitate understanding of the epidemic and ways to fix some of the issues. These are:
- Join the Autism Caucus in Washington.
- Hold ongoing hearings of this nature.
- Overhaul the 1983 National Vaccine Safety Act.
- Open up the books on the NVIC and see how many children are compensated for their autism.
- Establish a new oversight committee akin to the National Transportation Safety in Aviation.
He seemed to understand my frustration and my plea to have in place better pre-screening protocols prior to vaccine injection(s). We did a little brain storming on that particular issue but mostly he just listened to my respectful requests. He did not seem to have any knowledge of the basic issues surrounding this topic, particularly regarding the bloat of the schedule and the simultaneous injections. Dr. Barrasso seemed to understand the brain injury pattern that my son was afflicted with post vaccination that resulted in his autism. He expressed a desire to meet my son one day.
I gained a contact with Senator John Barrasso’s Legislative Assistant, Jay Eberle.
10:30AM Private Meeting with Congressman Cynthia Lummis (R-WY)
Representative Lummis was cordial and polite. She listened patiently while I outlined my 5-action initiative. I described my personal experience with vaccine injury in my son, which seemed to spark some surprise regarding the simultaneous injections that he received. She did not seem to fully understand how the schedule had changed through the years and the lack of research regarding the safety of the recommended schedule. I also feel she was equally surprised by the cronyism regarding vaccine oversight. Her legislative assistant who was present did as well, and they both asked further questions regarding those two issues. I provided them with nearly 30 pages of essay style research with references for further review. They both seemed extremely interested in my work, and complimented my efforts.
I gained a contact with Representative Cynthia Lummis’s Senior Legislative Assistant, Landon Stropko.
2:00PM Congressional Hearing
It was a surreal experience being surrounded by individuals whose work I read in the blogosphere. National advocacy groups were there like the Canary Party, SafeMinds, Autism Speaks, EBCALA and the Thinking Moms Revolution. For hours we stood outside room 2154 in the Rayburn House waiting for our chance to be heard. During that time we all got to know each other a little better, and some of us gave interviews for an Autism Speaks documentary.
The Hearing was standing room only just like we had hoped. There were a lot of autistic kids and adults in the room as well, many severe. They did cause a bit of a disruption, which I did not mind because it was good for Congress to see the disability and know how complex it is to manage. The Hearing started with the government panel, which included a representative from the NIH Dr. Guttmacher, and Coleen Boyle PhD from the CDC. The government officials were grilled for hours by the Committee, some of the questions were not fully answered. Just like the Hearing a decade earlier the CDC was ambivalent on autism causation and vaccine injury for total populations, which again cast doubts on their policy. Dr. Boyle’s take home message was vaccines have been ruled out as causal for the majority of the population. She can say this because only large-population based epidemiological science has been used to produce the negative studies. The scientific methods are inept at finding causation in subsets of the population just like autism cohorts. The government panel was followed up with a public panel that included Bob Wright Co-Founder of Autism Speaks, Scott Badesch of the Autism Society, Dr. Mark Blaxill Chair of SafeMinds, Bradley McGarry Coordinator of the Asperger Initiative at Mercyhurst University, Michael Carley Executive Director of GRASP, and Ari Ne’eman President of the Autistic Self-Advocacy Network. Their statements in some situations were opposing, like the idea that autism was an epidemic, could be cured, and that the condition is devastating for the impacted families. One message came through clearly from the entire panel, which was the lack of services available to the diagnosed and their families.
- CDC blunders on Poul Thorsen’s contribution to negative vaccine autism science, which led to misleading and false statements. Coleen Boyle PhD under oath stated the fugitive Poul Thorsen only contributed to two research articles out of the 24 studies the government uses to refute vaccine autism causation. Documentation was submitted to the Hearing, which revealed Thorsen’s involvement in 21 of those 24 studies. Dr. Poul Thorsen is listed by the Office of Inspector General as “Most Wanted” and is a leading scientific contributor to CDC vaccine/autism science (OIG, n.d.).
- The Autistic Self-Advocacy Network representative Ari Ne’eman misled the panel with the UK Adult prevalence autism rate data. Ari claimed that the adult autism population is equal to childhood autism (1%) thereby denying a surge in diagnosis, or epidemic.
Here is the publication he was speaking about:
Brugha T. McManus S. Meltzer H. Smith J. Scott FJ. Purdon S. Harris J. Bankart J. (2009). Autism Spectrum Disorders in adults living in households throughout England Report from the Adult Psychiatric Morbidity Survey 2007. NHS.
This was a 50 question telephone survey and interviews of 7,461 individuals who were able to live independently operate, and interact on the telephone. To make comparisons with the U.S. ADDM statistics is an extreme leap. Ari Ne’eman will use any publication to deny there is an autism epidemic without considering the weight of the data.
The major conflicts in his evidence was the U.S. ADDM statistics utilized educational, and medical documents to establish confirmed diagnosis. Secondly the majority of patients afflicted with this condition are non communicative thereby could not participate in a telephone survey. I would encourage everyone to read the questions posed to these adults who were 16 years and above to judge the validity of this publication.
- Congressman Issa's refusal to allow Dr. Brian Hooker to testify about CDC’s emails obtained by the FOIA, which showed CDC knowledge that vaccines are causal for autism. Dr. Hooker's testimony was submitted in writing and I would encourage everyone to read the important documentation he uncovered. His testimony would have been a powerful addition to the Hearing.
The Needs That Were Discussed
- Support Services (adult & Child)
- Children’s Medicaid Coverage (written submission)
- Despite the large research dollars Interagency Autism Coordinating Committee (IACC) will not explore treatments and therapies that families have been successfully using for autism rehabilitation.
- Make ABA therapy an essential benefit of the “Affordable Care Act” (written submission)
- More research like a vaccinated verses unvaccinated study.
Autism Speaks and their turnaround.
For the first time Autism Speaks described vaccines as being a facilitator for autism. I applaud this move by Bob Wright. This admittance will hopefully further validate the parental and scientific evidence that vaccines are a contributing factor to autism.
The NeuroDiversity Movement
The Autistic Self Advocacy Network among other groups is sparking a new movement in our community. The neurodiversity movement sometimes called the autism rights movement is trying to establish equality for the afflicted patients. The majority of their platform is inline with the thinking of the old parental movement except for a few key issues. They do not think there is an autism epidemic, and they do no not believe vaccination or any environmental trigger is contributing to the disorder. The affected adult individuals want society to embrace their differences, which is what we all want in the community but they refuse to entertain the thought that some supportive measures like exclusionary diets are beneficial to the disability. The neurodiversity movement does not want a cure, they only want acceptance. They quote and misrepresent data to support their ideology, which is what I take issue with. Ari Ne’eman gave a clear example of that fact during the hearing. He speaks for a very small population in the autism community. Most of the affected have real biological conditions that need addressing, something about which he is in complete denial. The Thinking Moms' Revolution made a video of the autism most of us know.
According to a recent study autistic patients have higher incidences in bowl disease, schizophrenia, epilepsy, CNS, and diabetes mellitus type 1. These are just a few co-morbidity burden’s described by the authors of this peer-review (Kohane et al, 2012). Another important fact to embrace is that autism recovery is possible. According to researcher Deborah Fein, PhD 10% or 20% of the autism population is able to move off the spectrum with the help of early supportive therapies (Doheny, 2009). To ignore this data and subsequent evidence of the explosion of incidence of autism is a major part of their denial.
What really bothers me is the platform Ari Ne’eman and Carley received. The Hearing would have been better served if Dr. Brian Hooker were allowed to testify. For instance Carley who has Asperger’s resents being lumped in with “those other people” meaning the children and adults who have to wear diapers and are self-injurious that make up the majority of the spectrum (Autism Jabberwacky, 2010).
Who Wanted To Be At The Hearing But Couldn’t
SafeMinds gathered testimonies of caregiver, and disabled individuals that were not able to attend the Hearing. On my flight from Washington DC to Wyoming I was able to read the hundreds of absentee testimonies. I strongly encourage everyone to carefully absorb their moving statements. It was difficult for me to read the personal accounts, and dedication of so many. Those of us in the struggle know how pervasive this disability is, and how invisible we become to society because we are completely dedicated to our children. Our population’s silence should be an indicator of the disability devastation that now affects 1:88.
Autism Rate Data
Another document presented to the Committee, which was organized by SafeMinds used the data from the Individuals with Disabilities Education Act (IDEA) showed the growth in autism by state. Massachusetts had the highest annual increase at 29.0%. Iowa had the smallest yearly increase at 1.2%. Wyoming the state in which I reside came in at number 10 out of all the 51 states. Coleen Boyle PhD from the CDC could not give any insight as to the disparity of the numbers across the United States. Yet another disappointing factor regarding the ability for our government to provide adequate information to the autism community.
The testimony from the NIH and CDC was typical. They did a good job at their back patting. Dr. Guttmacher from the NIH and also a Chair member of IACC proclaimed their dedication by the number of meetings (17) they hold each year, which is above the outlined recommendations. He was very complementary of his efforts regarding the open public comments at the meetings. He left out his complete rejection of statements made at these public forums. Even though he proclaimed his appreciation for parental testimonies he high tailed it out of the Capital after the gavel fell, which excused his panel. So hearing parental and advocacy groups in the second panel account the laundry list of needs didn't seem so important after all. Their direction of research is more inline with the neurodiversity groups, which hold a very small percentage of the autism community. They completely ignore how we, the parents have been helping our children to recover with a mix of efforts that are both conventional and biomedical. One would think these parental efforts would be further explored based on the progress that is seen in our recovering children. IACC has wasted precious financial resources that could have gone into viable treatments. Coleen Boyle PhD from the CDC was a complete waste of space. She kept reiterating that she was not a vaccine expert but commented as though she was. She gave misleading testimony, which I felt was not entirely her fault because she is completely uneducated regarding the issue. I question the motive of the CDC having her participate on the panel. I am sure the very important issues discussed during the Hearing will continue to ring with the Committee members who were visibly moved by the audience who remained verbal and emotional throughout the testimony. I gained worthwhile contacts with my representatives and have a clearer outline in how to proceed with my activism. It was wonderful to see Congress participate in this very important issue and give us in the community a voice once again. I cannot wait for the next opportunity!