Managing Editor's Note: I wonder if Ed Trevathan, Director of the National Center on Birth Defects and Developmental Disabilities at the CDC, was served a "Mile High Mixer" when he left the IACC meeting early, ostensibly to attend another meeting in DC... And was seen shortly thereafter on a flight to Atlanta, seated in First Class? Katie Wright reveals the story below.
By Katie Wright
My phone would not stop ringing today. Parents everywhere were appalled by the behavior and actions of the IACC. And that is just the parents listening to the committee via phone lines. What people who attended IACC in person told me they observed shocked me.
Many of the committee members are directors of government institutes which conduct autism research. However, some of these directors are sorely lacking basic knowledge about autism. Dr. Story Landis actually asked what IMFAR was! Seriously she did. It was only downhill from there.
The discussion regarding public input was enlightening. Lyn Redwood is one of the very few public members who serve on autism national autism advocacy organizations. Redwood said that the public deserves to have more opportunities for input, such as a live town hall meeting. IACC has not yet presented the finalized plan to the autism community. The public has had no opportunity to comment. Della Hamm immediately rejected that idea stating that a public forum would involve far too much work. However, the work could easily be contracted out to an organization like the Keystone Group.
Ellen Blackwell, Singer and Hamm argued there had been plenty of opportunities for public input (via e-mails that were not discussed at IACC meetings) and that what the public says doesn’t matter because the committee had already voted and made their mind up! Alison Singer, a public member representing no one, jumped in saying that every e-mail to the committee had been read by someone (?), what more could parents possibly want Singer stated that IACC’s only responsibility was to read the e-mails, NOT to agree or act upon them! To his credit, Ed Trevathan was the only IACC member, other than Lyn, who supported a public forum, stating that e-mails are not the same as engaging the public live. Insel said that a town hall meeting would be “unfair” because some people would not be able to attend. What? So very many things about autism are unfair, not being able to attend a town hall meeting does not make my top 500.
It seemed as if there were a million reasons why these committee members do not wish to stand behind their actions in front of the community they have been assigned to serve. Rather than embrace Redwood’s idea and say, “Yes, we are always asking what parents want to know, what they need from us, let’s invite them into the discussion” Insel and company responded by angrily dismissing the idea. They reacted as if Lyn suggested the next IACC meeting be held under water.
Blackwell’s and Singer’s extreme aversion to a public forum revealed their desperation to keep IACC free from any mainstream, normal or rational influences. Blackwell and Singer heatedly argued that all public comments had been “catalogued” (in a waste bin?) and more than enough time had been spent soliciting the public’s input. I think the public deserves to know the content of these e-mails. Singer and Blackwell, non autism community representatives, know that in any public forum 90% of parents would vehemently disagree with their actions and that frightens them. Therefore, they argue that the public should be content to submit silly little e-mails that someone “reads” and then throws away. If IACC wants to take that tack, let’s stop with this pretense of public input altogether and give the committee to the CDC.
I know we were all asking ourselves after the last meeting "how did Singer know in advance there would be a vote to repeal vaccine research when others on the committee did not?" I wonder….We never did get an answer... We do know for a fact that Singer called my parents, Bob and Suzanne Wright, the night before that vote saying she was going to betray them and the organization they founded by voting against AS interests and policies. We also that Lyn Redwood and others had no idea this vote was about to take place. Fact. We know that there are to be no private discussions between committee members, especially between the committee chair, Insel and other board members. This is both a fact and a governing rule of IACC. All discussions are to be recorded and transparent.
After today’s meeting adjourned, everyone appeared to leave the building. 15 minutes after the absolute end of the meeting all IACC members, except two, were gone. Someone witnessed Alison Singer and Tom Insel locked in an intense and lengthy conversation. These two are always on the same page at IACC meetings and it seemed as if they had much to discuss. When Insel realized that they had been spotted, he and Singer panicked and darted in the opposite direction. Why did they run from sight? What were they talking about? Hmmm…I wonder… Here we have the unelected chair of the IACC, a self-professed non expert in autism and Singer, a person who lost her job at Autism Speaks because she was unable to represent the autism community, having a post-IACC private meeting. Too bad their conversation was interrupted; at least there is always time to revisit their agenda later via telephone calls.
Ed “First Class” Trevathan deserves a special mention. Prior to the end of the meeting Ed said he had to rush off early to another CDC meeting in Washington. Ahhh, the work of CDC is never done! So imagine someone’s great surprise when they witnessed Ed, less than an hour later, sitting in First Class section of a flight to Atlanta. Better yet, Ed was enjoying some fine wine at 3:45pm in the afternoon. Is the CDC now holding “meetings” in the First Class of airplanes? Does our government pay for CDC employees to travel First Class because this is not the first time Ed has been sighted in First Class cabin. Does the CDC allow employees to drink alcohol while working in “meetings?” I am just a lay person but CDC ethics are very confusing. I hope someone can help me understand!
Obviously there are many agendas at work in IACC: hiding from the public, thwarting real parental input, engaging in private conversations, lying to sneak out of meetings early…all seem like important IACC priorities, taking precedence over what is happening to our kids. One can only hope that the new administration will to completely overhaul IACC, replacing the zealots and disinterested government hacks with genuine autism community representatives, bona fide autism experts and people truly vested in stopping this epidemic.
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.