May 14, 2009

The Sun Rises First in Maine Or Maine, The Way Life Should Be

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


Autism, including its possible causes and treatments, is a highly-charged, polarizing subject within the medical, public health, and even the autism community. Maine CDC/DHHS is hosting a medical conference to provide an update on the latest science on possible causes, diagnostic tools, and treatment of autism. The conference will feature several national researchers, Maine treating physicians and an interactive format, allowing the Maine clinical community an opportunity to ask questions and discuss issues with presenters. Some areas that will be covered include some of the murky areas in causes and treatment of autism, particularly those treatments that parents embark on with or without the knowledge, guidance or approval of the child’s physician. Examples include DAN, special diets, and avoiding vaccines. By addressing these more controversial areas, we hope to address one of the overall goals of helping to break down the barriers between physicians and parents in order to ultimately provide more comprehensive and collaborative care for children with autism

Primary Audience

Pediatricians and other primary care clinicians who care for children Objectives
By the end of the conference, participants will be able to:
  • Describe the trends of autism (Autism Spectrum Disorders = ASD).
  • Identify the first signs and symptoms of Autism.
  • Explain when and how to refer for specialized diagnostics.
  • Apply universal autism screening with recommended tools.
  • Describe the use of the AAP Autism Toolkit.
  • Describe what is available for diagnostic and therapeutic services in Maine.
  • Define co-morbidities to autism and ways to effectively identify and treat them.
  • Identify effective strategies to address some of the challenges parents and children with autism face in clinical settings.
  • Discuss the newest research on the causes of autism, including genetic and environmental theories.
  • Discuss the newest research on the treatments of autism, including those that are commonly used by families, but not necessarily widely accepted by the medical community.

Conference Agenda

8:00 Registration, Networking, Coffee
8:30 Introduction and Overview of Autism in Maine
Dora Anne Mills, MD, MPH
9:00 Autism 101
Carol Hubbard, MD
Victoria Dalzell, MD
Mary Ellen Gellerstedt, MD
Don Burgess, MD
First signs and symptoms, Maine’s new screening tool, how and when to refer for specialized diagnostics, how a diagnosis is made, AAP Autism Toolkit, diagnostic and therapeutic services in Maine.
11:00 Keynote by Tim Buie, MD
Gastrointestinal and Nutritional
Co-Morbidities in Autism, followed by Q&A
12:30 Lunch – Voices of Autism
1:30 Keynote by Martha Herbert, MD, PhD
Genes and Environment, Developmental and Chronic: An Inclusive Approach to Autism Science, followed by Q&A
3:00 Keynote by Jon Poling, MD, PhD
Looking Forward Beyond Vaccines: How Do We Know What Autism IS NOT if We Do Not Know What Autism IS? Followed by Q&A with other conference speakers.


Timothy Buie, MD
Pediatric Gastroenterologist
Massachusetts General Hospital
Harvard Medical School

Don Burgess, MD, Pediatrician
Past President of the Maine AAP
Southern Maine Medical Center

Victoria Dalzell, MD
Developmental-Behavioral Pediatrician
Maine Medical Center

Mary Ellen Gellerstedt, MD
Developmental-Behavioral Pediatrician
Eastern Maine Medical Center

Martha Herbert, MD, PhD
Pediatric Neurologist
Massachusetts General Hospital
Harvard Medical School

Carol Hubbard, MD
Developmental-Behavioral Pediatrician
Maine Medical Center

Dora Anne Mills, MD, MPH
Director, Maine Center for Disease Control and Prevention
State Health Officer

Jon Poling, MD, PhD
Neurologist, Clinical Assistant Professor
Medical College of Georgia
Father of child with autism

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 have long recognized that my role in this community is to be the challenger. To guide (and sometimes push hard) people toward what is needed or being neglected. It was an incredible experience to spend the day with divisions of CDC and the AAP, whose parent orgs I have been sharply criticizing for years, and to NOT have anything critical to say! To see people getting it right. For there to be no BS to have to call out and enjoy watching doctors and parents learn from one another and connect with one another.”

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:




K Fuller said...

Wow! Was there calm? Were they really listening to each other?
Paul Offit would not have contributed, he would have just stirred the angry pot.

Ginger Taylor said...

No fistfights broke out, no blood what shed, no polio epidemic broke out, there weren't even any conflicts.

Two or three vollies of respectful debate, but there wasn't even really much conflict or distention in the debate, just people emphasizing different non-contradictory points mostly.

And I don't know that Paul Off it is really open to free debate. Does he participate in events that are open discussion and don't have a strictly controlled format?

Anonymous said...

"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."

Beautiful. Thanks for sharing this awesome event.

I agree. Time to really focus on the States cuz the Feds just aren't "getting it" -- too much at stake for them.

I suspect Maine's CDC may start to get some push back from Mama Bear in the not to distant future.


anagramy said...

I'll just add my comments that were posted to CK2 and my state site when I posted your link.

"Go to the link....and leave your thank you posts to all who helped organize this and managed to pull it off.
For now have a model. Get the DVD asap, set up a meeting....and go for it. I know we will here.
Thank you Maine!
Never underestimate the power of parents.......the power of the truth....the power of the right thing to do......Amen!"

JamesMom said...

After reading about the conference this morning, I spent the rest of the day wondering if I was dreaming. It is just too good to be true. For the first time it gives me hope that maybe one day I won't have to bear the huge responsability of treating my son's illness against the advice of most doctors (I will never be able to thank our DAN enough for his courage and humanity).

Maybe one day I will be able to fight against my son's autism in the open, with everyone's support, rather than have to hide in the shadow to avoid fighting those who should be helping us.

Maybe one day I will be able to regain my trust in the medical establishment.

Thank you so much for organizing this event.

Cricutting Wendy said...

Thank you so much for posting this! I am elated to think maybe things are going to change for the better for our kids.

This brought me to tears and fills me with hope. I can't wait to watch the entire conference.

Dawn said...

I really hope that New Hampshire will be next to hold something like this! Your post brought me to tears! Thank you for all that you do for our kids!