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 this week 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.
Here is the description of the conference from the Maine CDC web site:
Autism: Bridging the Gap Between Knowledge and Practice for Clinicians
You did see that last name on the list, yes? Poling.
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 have done for our kids. But then the parents asked that Dr. Jon Poling, the Johns 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 Julie Gerberding 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 Tuesday in Maine was what 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…”
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 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 Gina 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!”
Beyond that I am not going to share what was discussed, because I want you all to watch the conference for yourselves. It has all been recorded and the video will be available on the Maine CDC’s web site in about two weeks, and on DVD. I will of course alert the masses when it becomes available, and encourage you to send it to all your docs, peds, autism professionals, public health officials, media contacts and your grandma.
But I will share with you an excerpt from a thank you note that I sent to the rest of the group that put this conference together:
“On a personal note, seeing a room packed full of autism and health professionals hang on every word of a long demanding speaking schedule that addressed toxic triggers has done more to melt my cynicism than anything has done in a long time. Looking out on the crowd I had hope for the first time in ages that we parents might not be alone in our fight forever, and that I may get to stop having to be a doctor and a lawyer and journalist and an activist and the town crier and just get to be a mom to my boys.
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 yet, but I think big chunks of ground were closed in the gap between “us” and “them”.
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 thoroughly 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 Nation”.
(And for the record, Dr. Mills invited Dr. Paul Offit to come sit on a vaccine panel with Dr. Poling, however Ofitt declined the invitation citing a busy schedule.)
News stories on the conference here:
WGME 13 (CBS)
WCSH 6 (NBC)