Is IACC a serious autism research committee or a daytime drama? I’m confused. This would be funny if so much were not at stake. The machinations, backstabbing, covert agendas, and secret confabs are reminiscent of 2000 Florida re-count. Sometimes rules and laws apply, other times they do not, secret phone calls, secret meetings, anonymous votes, mysterious re-votes on already settled business, broken promises, probably broken laws…
Parents all over this country who worked so hard to see the CAA passed were listening to Wednesday’s goings on thinking, “What the hell, Tom!” When my parents should have been down in Florida with their pals, playing golf and generally being retired, they were pounding the halls the Congress and the Senate working hard to procure this money for autism research. I went with them only a few times, but I never saw Tom Insel or Ed Trevathan there. Now, Tom and his cronies seem to think it is their prerogative to re-write the Combatting Autism Act. Enzi, Kennedy and Dodd, clearly and unequivocally said on the Senate floor that the CAA must finance independent vaccine research. Not, “independent vaccine research- pending the approval Tom Insel and Alison Singer.”
What is with the re-vote anyway? This issue had been settled at the last IACC. A re-vote of the vaccine research was not even on the agenda. Lyn Redwood and other public members of IACC had no idea this issue would be re-visited. But who did know? Alison Singer knew. Ms. Singer called Bob and Suzanne Wright the night before to tell them that she would vote against it. My parents were appalled Singer would vote against Autism Speaks’ wishes and that she intended to keep AS’ IACC seat as her own personal platform. When one resigns from a job, they resign from a job, they do not pick and choose the elements of the job they’d like to keep.
Listening to the federal members of IACC debate about why independent vaccine research would be “too hard,” was beyond human endurance. Ask my husband what it was like not to sleep through the night for three years, that was hard. Issuing and RPA for vaccine safety research is NOT hard. The next excuse was the rationale that “they would be only be replicating vaccine/ autism research” was absurd. No federal agency is even doing this type of research, that is the whole point and why it needs to get done! There has been no research completed nor is any or research planned that will study the safety of injecting babies and toddlers with 38 vaccine by age 2. Then came an absurd comment by the brainiac who said “well, we cannot do this because what is it conflicts with other research?” As Lyn Redwood said, “it’s called science,” dope. These people could not be more out of touch with reality. Finally came most hackneyed cliché ever: “we have limited resources and cannot afford vaccine research!” IACC cannot afford to spend .17% of the CAA budget on this issue, that’s really going to break the bank? Wake up IACC, more money has been spent on robots working with aspergers kids than on vaccine safety research.
There has been too much unscrupulous behavior from the IACC leadership, only serving to confirm why this committee should be disbanded. Why did some people know the vaccine issue would be re-voted upon and others did not? Why was this issue revisited in the first place? Why are Tom Insel and Ed Trevathan willing to go to such lengths to avoid real vaccine research? The whole committee needs an ethical and representative overhaul. We need a doubling of public members who represent autism orgs of more than a few thousand members. TACA, NAA, Generation Rescue, Safeminds and ASA all deserve multiple seats. Disgruntled former employees of autism organizations who represent only themselves need move on with their lives.
Kudos the brave advocacy work of Lyn Redwood of Safeminds in her courageous fight towards accountability, transparency and answers for all of our children. Parents are also so appreciative of the support of Stephen Shore. The AAP pediatrician on the committee said that his patients have more questions that ever about vaccine safety, agreed that independent vaccine research must be done. Thanks to ASA and all the public members of IACC who stood their ground against obstructionist federal committee members. Families are especially grateful to Autism Speaks for standing with the autism community and telling Tom Insel that his deceptive actions have not gone unnoticed and have no place in the process of allotting the CAA monies.
Out of crisis comes opportunity and hopefully now that all have seen the IACC as the ethically compromised and partisan mechanism that it is, a far more representative, trust worthy and productive committee will take its place.
Katie Wright has two young boys. Her oldest son, Christian, is severely affected by autism. He developed normally; smiling, talking, walking; only to lose every skill and every word by the age of 2 and a half. Upon the advice of medical professionals Katie and her husband were advised to pursue only high quality behavioral therapy, speech and OT for Christian. It had no meaningful impact on Christian until his parents sought help from DAN! doctors who treated the underlying causes of Christian's descent into autism. Christian has improved but still has far to go. He has Inflammatory Bowel Disease, the measles virus in his gut and an immune system akin to a late stage AIDS patient. Christian does not have a psychiatric disorder. Before autism, Katie Wright was the Clinical Director of Sexual Assault Crisis Center in Stamford Connecticut. Katie is proud to serve on the Boards of NAA and SafeMinds.