5/3 IACC meeting recap/ Tami

[Guest guest]

I attended IACC (Interagency Autism Coordinating Committee) meeting held in Sacramento, California yesterday. Here is a recap of the meeting:

There were two panel discussions yesterday; panel one on research initiatives and panel two on services.On panel one Lawler from IACC stated that there are 41 search initiatives being proposed, among which 9 are related to treatments. On her slides it showed that within these 9 initiatives, 4 are related to biomed. This kind of gives a rough idea that prior to this meeting the portion of money is allocated to research for biomed approximately, 4/41. These proposed initiatives are still in very high-level, including research for safety and success of widely used biomedical treatments as one of the initiatives.In many occasions throughout the meeting Chez, the panel one moderator, stated that DAN intervention is not based on the foundation of scientific study. He cut short many parents' requests/comments on the needs for biomed research (including my own) in the name of running out of time. My friend and I, during the lunch break, went to complain to some IACC personnel about Chez being biased against DAN approaches and biomed treatments, and him being unsuited for the role of a moderator, as he sent a strong message to the parents and hinted what the research money would or would not be spent on.I appreciated very much one of the comments from a mom who has a 40-year old autistic son. She warned the panelists about the so-called "evidence based, best researched" approaches. She said that 40 years ago, the evidence-based, best researched treatment was punishment, which in turn had harmed her child even more. Until today, the autistic adult murmurs "don't hit me!".I also went to Lyn Redwood (one of the three IACC representatives on the panel) to talk to her about the multiple infections commonly seen clinically and lab tested in our children; yeast overgrowth, viral infections, parasitic and bacterial infections, including stealthy pathogens such as Borrelia and Mycoplasma. I also handed Lyn Redwood as well as Bothwell (a board member of NAA) a copy of the published article written by Dr. Bransfield, coauthored with Wulfman, Harvey, and Usman, titled "The association between tick-born infections, Lyme borreliosis and autism spectrum disorders. Lyn is a nice lady. She apologized for "some panelist" being very rude and appreciated parents spending a day with IACC to provide inputs to make her job easier. She expressed that she is all ears to what parents have to say. Other two IACC representatives Lee Grossman and Lawler also appeared to be open-minded and take a good note of parents' comments and requests. Lee Grossman also mentioned that they want their research initiatives to be more consumer-focused, and this is the reason that they now ask for inputs from parents and from professionals who work with children and adults in the spectrum.

In Chez's close remark, he again emphasized that DAN treatments are not scientifically based, and DAN doctors need to be taught how to scientifically conduct clinical trials. He appraised for research on EGG and genetic cause such as fragile X. He also stated that alternative medicine are not proven. (My friend who came with me had spoken earlier about homeopathy helping her child.)

As Lyn Redwood stated that research initiatives are unlimited, but the budget is, I feel there is much politics involved in how the money gets allocated. It would require a grass roots movement to influence allocating the budget. They are still collecting parents' inputs. Alison W. from NIMI is assigned to receiving email messages from the autism community. This is Alison's email address: ab43b@.... How do we want to proceed with this going forward? Should individuals send an email to her for proposing research initiatives, or should we send a well-organized message collectively? Tami, I will hand it over to you for decision-making. I think that it might be more effective for LIA Foundation to formally send to her an email. And, by the way, I distributed 25 copies of the article you emailed me as well as 50 copies of the brochure of the incoming LIA conference at the meeting. Hope this helps to bring about some awareness to the Lyme/Autism connection.

Limin