The Sun Rises First in Maine - The Maine CDC Autism Conference

[Guest guest]

Hello Friends!Please indulge me on my lengthy message, as I am excited about what has happening in Maine, and would like to bring it to your attention in the hopes that your state can benefit from the Autism Conference that our public health department held six weeks ago. It was ground breaking. Now that the CDC in Atlanta has announced the huge paradigm shift in understanding autism, that most autism is environmentally triggered, the doors are opening on making actual headway on causation and treatment.Our little state is now at the forefront of that discussion.On Tuesday, May 12th in Augusta Maine, the Maine Center for Disease Control & Prevention, Department of Health & Human Services, the American Academy of Pediatrics - Maine Chapter, the Maine Medical Association, the Maine Osteopathic Association, the Maine Emergency Medical Services, the Autism Society of Maine, the Downeast Association of Physician Assistants, national figures in autism research, causation and treatment, state developmental pediatricians, state DAN physicians, biomed parents, non biomed parents, and autism treatment and therapy providers of all kinds met to do something that has never been done before in this country.Listen to one another.Maine has always been one of the most progressive and no nonsense states in the US, and they proved it again by casting aside the fear of what might happen if we talk openly about even the most difficult of all the autism issues to forge new ground and dare to initiate new partnerships in serving people with autism.THIS is the conference I have been waiting for.THIS is what should have been happening all along.You can read the description of the conference from the Maine CDC web site.This conference came to be because of a friendship between two women who had children around the same time. Dr. Dora Mills, the head of Maine CDC, and Becky Grant-Widen, board member of the National Autism Association. Dr. Mills and Becky worked together many years ago, when Becky was working for the American Lung Association, testifying before the state legislature together on an anti smoking bill. Their relationship was put to the test a few years later after Becky’s son was diagnosed with autism and the two women found themselves testifying against one another on thimerosal legislation. But at the conference Dr. Mills told her autism story. That in Medical School she was told that autism was rare, around 4 in 10,000, but that of her and her three friends that were pregnant at the same time (her niece, and her best friend from medical school, and Becky) her child was the only one NOT diagnosed with autism. Dr. Mills explained that for her, the autism rate was not four in 10,000, it was three out of four.So last year she and Becky began talking in earnest about what was going on in autism, and Becky’s concerns for the disconnect between parents who treat their children biomedically and their primary care and developmental pediatricians. So Dr. Mills decided it was time for their conversation to expand to include everyone in the state who is concerned with autism. She put together a steering committee which included professionals from Maine CDC and AAP, Maine ASA, the state developmental pediatricians, biomed parents, and even one of the CDC and AAP’s sharpest critics on vaccine issues, me. (Quite a fearless move on Dr. Mills part as Maine’s chief vaccine advocate).There was common agreement on who two of the three keynote speakers should be, as all involved had deep respect for the work that Dr. Tim Buie and Dr. Martha Herbert (Both of Mass General and Harvard) have done for our kids. But then the parents asked that Dr. Jon Poling, the s Hopkins Neurologist whose daughter regressed into autism following her 18 month vaccinations and who is being paid for a vaccine injury in the VICP, be invited to present on vaccine causation. That fear began to creep back in. But the fear was not of the things that Dr. Poling actually espoused, but what had been written about what he espoused. Dr. Mills spent a little time researching and told the committee that as far as she could determine, Dr. Poling and Gerberding (former head of CDC in Atlanta) were actually saying many of the same things, and thought we should hear from him directly instead of making assumptions about what he might say.And as reasonable a position as that was to take, that is actually a revolution in the "vaccine wars". To show no fear, listen to people’s ACTUAL positions, and work together to find out what the truth is in all this, rather than allowing media filters to pigeon hole people and distort their messages.So what began as a somewhat wobbly partnership of people who have been at odds with one another, ended up bearing truly amazing fruit.What happened on May 12th in Maine was what Dr. Bernadine Healy was asking for when she said that:

“…we haven’t connected. So I think part of what’s missing here, we’ve got to stop all this battling and we’ve got to honor each other’s perspective…â€To say that the conference went well would be a huge understatement.Autism was not framed as one psychological/behavioral disorder, but as “Autisms†of varying biological origins. Autism was treated like a medical disorder and our kids as ‘sick children’ who need individual investigation and customized medical treatment. It was heavy on the research and individual experiences of clinicians and light on the speculation.Mainstream Pediatricians got to share what they do like about DAN treatments and what they are concerned about. DAN docs got to share a few of their methods and what they are seeing. There was debate, but it was respectful and earnest. People were real. And one mainstream ped asked for greater communication between the two groups so that continuity of care could be stronger. It was music to my ears.Dr. Tim Buie (pediatric gastroenterologist) is quite beloved in Maine as many docs send their kids to him down in Boston, and to hear him talk to a hundred Maine medical professionals about which diets might help which kids and show video of extreme behavioral problems that were alleviated with GI treatment was a huge relief. Finally! They can hear someone they trust talking about the gut brain connection and see things that would seem to have NO relation to intestinal issues actually can.It was a bit of an out of body experience to watch a state chief public health official hug Jon Poling on stage after his speech. And then see him hang out for more than an hour after the conference was over talking to and connecting with (and laughing with) Maine CDC and AAP docs (even some who were afraid to let him on the bill in the first place) felt like watching chunks fall out of the Berlin Wall.And the conference even had that “come to Jesus moment†that Dr. Healy was looking for on Larry King. After Martha Herbert’s very powerful presentation on gene/environment interaction, Dr. Mills, coming to tears, joined her at the podium and told the crowd that she had just experienced a monumental paradigm shift, as the audience responded with a standing ovation.I sat with Harry and Tembenis who lost their son Elias to his vaccine induced autism and seizure disorder. Every 15 minutes Harry would turn to me and say, “Did you hear what they just said? I can’t believe this is a CDC event!â€You can now watch the conference for yourself on my blog, as I have uploaded videos of each of the lectures. They will be available on the Maine CDC web site, however they must be closed captioned to be ADA compliant before posting, so it is taking more time to get them up there. I posted the videos to Adventures In Autism in six parts:

Welcome and introduction by Dora Ann Mills, MD, MPH, Director, Maine Center for Disease Control and Prevention, State Health Officer, featuring Becky Grant-Widen, board member of the National Autism Association. [HERE] Autism 101, and overview of autism and diagnostic measures by several Maine developmental pediatricians. [HERE] Gastrointestinal and Nutritional Co-Morbidities in Autism by Tim Buie, MD, Pediatric Gastrointerologist, Massachusetts General Hospital, Harvard Medical School [HERE] Kim Block, reporter for WGME 13, presents a news piece on autism treatment [HERE] Genes and Environment, Developmental and Chronic: An Inclusive Approach to Autism Science by Martha Herbert, MD, PhD, Pediatric Neurologist, Massachusetts General Hospital, Harvard Medical School[HERE] Looking Forward Beyond Vaccines: How Do We Know What Autism IS NOT if We Do Not Know What Autism IS? Followed by Jon Poling, MD, PhD, Neurologist, Clinical Assistant Professor, Medical College of Georgia, Father of child with autism [HERE] Tell a friend. Or a doctor. Or any random stranger that has any relationship with autism.If you would like a set of DVD's for your own use, for an organization, for the media, for a physician or for a public health official, please contact me and I will make sure you receive one.I don’t know where things will go from here in Maine, but I don’t think they will be the same again. I am sure that we are not all in the same place on vaccines yet, but I think big chunks of ground were closed in the gap between “us†and “themâ€. Most importantly the fear gap was closed, so the conversations that need to happen can start to happen. What I can say with confidence is that the ice has been broken.I believe that the greatest change will come at the state level for two reasons. Because it is the states and their school systems that are going broke paying to support our kids, and because in the states, real face to face relationships that melt disputes and lead people to look for common ground can take place.So let’s hope they are right when they say, “As Maine goes, so goes the Nationâ€.(And for the record, Dr. Mills invited Dr. Offit to come sit on a vaccine panel for a face to face exchange with Dr. Poling, however Ofitt declined the invitation citing a busy schedule.)Thank you for your time, and for caring about vulnerable children.Ginger , MSPlease Forward, Tweet, Face Book and Blog.

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