A of A Q&A: Dr. Liz Mumper on The Rimland Center for Autism

Managing Editor's Note: Click HERE to learn more about the Rimland Center for Integrative Medicine and Dr. Liz Mumper and her staff.

By Dan Olmsted

I owe Liz Mumper a lot – she and Jill James first got my attention when they discussed Jill’s research at the Environmental Working Group in Washington. I asked her if I could come to her pediatric practice in Lynchburg, Va.; she said yes, and for three days tutored me on methylation and immune responses and biomedical interventions -- and introduced me to the first children with autism I ever met, along with their families. Recently – three years after that first visit – we sat down in Lynchburg to catch up on her work, the new Rimland Center she runs there, and improving access to biomedical treatment for the growing number of affected children.

AOA: Tell me about the new alliance with the American Academy of Pediatrics. For a lot of people in the biomed community, that was just jaw-dropping, but also greeted with some skepticism given the AAP’s approach in the past. Were you surprised by it and what are your hopes going forward?

Dr. Mumper:  I am cautiously hopeful that we will make great progress, given our common ground that unites us – the well-being of children.  We are in the initial stages of sharing ideas and forming collaborations.  I am working with several wonderful AAP representatives in the complementary medicine arena.

AOA: You wear a lot of hats. Describe them for us.

Dr. Mumper: I’m medical director for the Autism Research Institute and in charge of clinician training, founder of the Rimland Center, and CEO of Advocates for Children, my pediatric practice.

AOA: Tell us about the Rimland Center.

Dr. Mumper: The center was established in honor of Bernie Rimland and we had our open house [last November] in the month of the one year anniversary of his death. I was very impressed by Bernie’s intelligence and his work ethic and his 40-year battle to get the word out about treating children with autism and their medical problems. Medical education is something I really enjoy and I bring some teaching skills to the table.  I thought that if I could somehow use the thing I love to do, and the thing I have some experience in, to help carry on Bernie’s legacy, that would be a good thing to do.
So the intention in establishing the center was two-fold. The primary goal was to build a place where clinicians could come to learn about medical problems of children with autism, how to take the histories, how to do the workups, how to interpret the labs and also how to learn from some of the ancillary people who are so important in recovering the children like speech therapists and physical therapists.

So we decided to establish the center with the goal that it would be a place where families could come and have their children assessed and treated but also where, almost all of the time eventually, we will have some kind of clinician there helping to take whatever he or she learns here and take it back to wherever they’re from. So the idea is you populate the world with people who can also do this.

AOA: You were saying you’ve had people from Italy and all over the place.

Dr. Mumper: What I have set up so far is clinicians coming from Italy and Australia, and I am working on getting the word out to clinicians who have taken our doctor training, because many of them have asked us in the clinician training for mentoring opportunities, and we’ve tried to provide that through very busy clinicians in the past who have mentored people over the phone or looked at their labs. But this is an attempt to actually have a site where they can come and spend three days, a week, two weeks or three weeks immersed in the actual-day-to-day nitty-gritty of how to work up these kids.
 

The name Rimland, in addition to standing for Bernie Rimland, also means Recovery Initiatives and Mentoring Linking Autism Networks and Discoveries. So the idea in trying to connect that with his name was to very much emphasize the mentoring aspect of our work very much emphasizing that to solve this problem we have to be part of a network – no one can work alone and make much of a dent in this.  We have to be open to the new discoveries and the concept of following the truth wherever it leads.

AOA: The Rimland Center is a beautiful building, even though it’s right in the middle of a commercial area. You go in and there’s wood and brick and this granite-topped kitchen and these leather chairs -- you feel like you’re in someone’s house. You’ve got a coin pool out back you can gaze at and a little waterfall, just very relaxing even for someone who’s not dealing with some of the issues that these kids are.  You also have a great, environmentally friendly playground.

Dr. Mumper: That was very much by deliberate design. We wanted it to look like a house that incidentally had some doctor stuff going on in it. So especially in the foyer and – we don’t call our waiting room a waiting room, we call it a family room – it literally looks like many family rooms that have been popular in architecture in the last 30 or 40 years because it’s got the sofas and the little bistro area with tables and chairs and the demonstration kitchen [for GF/CF and allergy-free diets].

The fact that it’s surrounded by woods yet in a commercial district was important to me because for families that travel from out of town or who fly in and may not be able to afford to rent a car, I wanted them to be able to stay in the house we’ve rented next door and then walk to a center for treatment, and they can walk to a grocery store, walk to several different restaurants, walk to a laundromat, walk to a pharmacy. So we have all those things within just a few blocks of our center.

The other thing that we are located very close to is a gastroenterology office. Dr. Mike Hart has an office literally about two blocks from our clinic. He’s been very accommodating so that if we have families who need GI evaluation or endoscopy, he’s very close by, and he’s in Lynchburg several days a week now.

AOA: I noticed yesterday one of the families I was talking to was heading over to see an endocrinologist, so there’s a variety of supportive people who are hooked in with you.
Dr. Mumper: I’m very lucky to have an endocrinologist who will work with my patients because that is not an area of expertise for me, and these kids have very complicated and perplexing endocrine problems. I’m very cautious and uncomfortable about treating a lot of them myself. So having GI and endocrine close by has been great.

AOA: I notice when you come in there’s a wall where people are commemorating or honoring others by purchasing Bernie’s Bricks.

Dr. Mumper: Bernie’s bricks is a project that was intended to do several things – one to honor Bernie Rimland, another to allow parents to make statements or honor their recovered children or pay respects to clinicians who had helped their children, or just give philosophical messages about what they thought was important, and the third purpose was to raise funding for our programs.

So parents and people in the community have the option of buying either a tile or a brick. I deliberately chose the tile that said Listen to the Parents to be at the center and at eye level, because that was Bernie’s most consistent message about what we needed to do to recover these children.

AOA:  As great as it is, the Rimland Center is something that not every family can take advantage of. They don’t have a practitioner in their area, or the cost can just become overwhelming. How can this become something everybody can do?

Dr. Mumper: That’s a really challenging question because there aren’t that many of us doing this work. I see patients typically at least three and a half days a week and mentored Dr. Van Dyke who is now working in Wisconsin. We also need family docs who can open their practices to the parents and the mothers because one of our great concerns with these kids is many of the mothers especially of our children seem to have health problems like chronic fatigue or lupus or …

AOA: That’s probably not coincidental right?

Dr. Mumper: No I don’t think it’s coincidental at all and it’s such a strong pattern. So we have challenges in that we’re trying to see as many patients as we can to fill the need, but also once we take them into our system have to continue to follow them and look at their labs and write their Rx’s, and it gets to be very challenging in terms of a personnel standpoint. We have seven people on our support staff. We have priced our services lower than most physicians and are having real struggles meeting our costs as a result of trying to keep the costs to the patient low. We see most of our autism patients at a loss most of the time.
We try to bill our fee with very carefully chosen codes that highlight their medical problems so that we hope they’re able to get insurance reimbursement for the fact the child has inflammatory bowel disease or chronic constipation or eczema or chronic allergies or asthma or any of the other problems that are very common in most of our children with autism.

AOA: Do most kids with autism have one or more of those?

Dr. Mumper: Yep. I would say that all of my patients with autism have at least one of those co-morbid conditions.

AOA: Not a coincidence either?

Dr. Mumper: I do not think that is a coincidence. So we’re struggling with how to make it affordable and that’s why we’re hoping to do various fundraising projects. But the reality is the projects are expensive and it takes a lot of bake sales, bracelet sales, Bernie’s Bricks sales, pen sales [her husband Mike makes and donates unique wood pens] and walks to raise enough money to really make a dent in the costs.

AOA: So ultimately one solution has to be insurance waking up and being forced to treat kids with autism as they treat any other sick child.

Dr. Mumper: We’re working very hard on the insurance initiatives. I’ve got the support of our local delegate to our Virginia House of Representatives, who is putting a bill in to get the state to look at best practices and medical services for children, and how to best maximize their potential as the first step toward working further on insurance reimbursement.

AOA: So what would your message be to parents who are reading this? To move to Lynchburg or to look for a biomedically inclined doctor, or to lobby their own legislators or to go somewhere and get into the diet? What does your pediatric experience tell you?

Dr. Mumper: There are people who move to places like Lynchburg or Austin or Sag Harbor or Melbourne to be near doctors, and I’ve had people actually move from overseas to be close to me, which is a very daunting type of responsibility to me. My hope is that with our training program there will be more clinicians closer to where the people live in order to be able to help them. One of the difficulties in going afar to get services is first you have the cost of transportation, then if you stay overnight you have the cost of lodging, then when you’re trying to troubleshoot problems on a day-to-day basis you’re a phone call away as opposed to being able to examine the child or lay eyes on the child so it introduces another layer of complexity, and frankly the potential for not-as-good care if you’re deprived of the ability to use your physical exam skills to assess how sick the child is and what the next step is.

So my goal ultimately is to get more doctors closer to where people are. I do think that by using the services of groups like TACA the parents can do a huge amount on their own through diet and supplements.

AOA: We link on our site to TACA’s diet.

Dr. Mumper: It’s very well done. Parents say the most effective and immediate thing they see is results from is the diet.

AOA: How would people go about supporting the Rimland Center if they wanted to?

Dr. Mumper: Right now we don’t have tax-exempt status although it is in the works. So anyone who wants to contribute to it needs to contribute to the Autism Research Institute.

AOA: Speaking of funding, Katie Wright wrote a piece for us in which she said a lot grants go to people with little to no clinical experience, and she proposed more go to doctors with patients they are treating biomedically. Two things: I bet you agree with that, and what could we find out that way that we couldn’t find out any other way?

Dr. Mumper: I think if the research was being done by those doctors you would find out a lot about the unique individual biochemistry of the children, the unique individual immunological patterns of the children, and how we try to get the kids better by addressing their individual, unique, specific problems as opposed to the classic research project that looks at X drug, nutrient or intervention in X number of autistic children vs. the ones that did not get the treatment and tries to make a judgment about whether that treatment works for autism.

My issue with that is that kids with autism are such a heterogeneous population that you can’t possibly in my opinion show much treatment effect for most things if you don’t select the intervention for what the child needs. So I think that it would be huge if the clinicians could get more research money.
--
Dan Olmsted is editor of Age of Autism.

Comments

[Lyn Bentley]

I only hope you all realize how lucky you are to have a centre so close to you - you could be living in Australia (normally known as Gods Country :) ) except on the Autism front. .....we are still struggling to find anyone to assist us and have to travel all the time.

[Kelli Ann Davis]

Liz Mumper ROCKS!

You should have seen her in action at the IACC Workgroup meeting on the 8th. She was a great spokesperson for our children and our community.

[Media Scholar]

Hi Tim Kasemodel,

Sorry that you are confused on the subject of the AAP.

Please read the following:

By David Kirby

On Friday afternoon, I spoke with a representative from the communications office at the AAP about the remarks by AAP President Dr. Renee Jenkins, who was quoted on Good Morning America as saying: “97-plus percent of children don’t have these kinds of defects, and so when you look at what the risk is to children, and then what the benefits are, the benefits far outweigh the risks that occur.”

Obviously, this quote was edited in mid-sentence, making it impossible to know exactly what Dr. Jenkins was referring to.

I was told that Dr. Jenkins misspoke when she referred to children with “defects.” What she was talking about is the subset of children who have adverse vaccine reactions such as localized pain and swelling, and/or fever.

Slightly fewer than 3% of children will have one or more of these reactions, I was told. So Dr. Jenkins was talking about susceptibility to relatively mild side effects, not genetic “defects” that can lead to long term neurological damage.

I realize that some people may not accept this explanation, but I do.

Please also read the following:

from: http://adventuresinautism.blogspot.com/2008/08/gma-confirms-jenkins-comments-were.html

Last week GMA ran a piece on vaccines and autism that included a quote by Rene Jenkins of the AAP.

"Ninty Seven plus percent of children don't have these defects, so, when you look at what the risk and the benefits to children are, and, you really weigh the risks, then the benefits far outweigh the risks that occur."
I wrote a piece heavily criticizing AAP for throwing away three percent of the population to serious vaccine injury.

Andrea Keller called GMA to see if they would release the rest of the interview. They said their policy is not to release unused footage, but that the context of the conversation was Autism.

Daivd Kirby called AAP and asked for comment, and they said that Jenkins 'misspoke' and she was talking about minor vaccine reactions like "localized pain and swelling, and/or fever."

I spoke with the producer of the GMA piece this morning who interviewed Jenkins. She reiterated that they don't release unused interviews, but she was nice enough to read me the question that was asked and Jenkins full response.

The discussion was about autism and not minor vaccine reactions. The question was a version of 'can you rule out an association between vaccines and autism', and Jenkins answer was something to the effect of 'you can never rule out an association between anything and anything else, but we don't see an association.... but in the case of Hannah Poling...', (the interviewer had not mentioned Hannah). And that lead into her quote, "Ninty Seven plus percent of children don't have these defects, so, when you look at what the risk and the benefits to children are, and, you really weigh the risks, then the benefits far outweigh the risks that occur."

So ABC DID use the quote correctly and in context.

David Kirby reports:

"I was told [by AAP] that Dr. Jenkins misspoke when she referred to children with “defects.” What she was talking about is the subset of children who have adverse vaccine reactions such as localized pain and swelling, and/or fever."

Jenkins was NOT talking about minor reactions and autism was the subject Autism and Hanna Poling WAS Jenkins reference point.

If Jenkins was misspeaking then that was a pretty out there misstatement. If someone was asked about about the percentage of people who get brain damage from boxing, how would one rationally include bloody noses in the answer?

I encouraged ABC to follow up on this and help us get a real statement from AAP (or CDC) on what they believe the percentage is for kids who are at risk serious vaccine reaction and autism.

[Laura]

AAP collaboration? - hmmm, I wish but it doesn't seem so at their home base in IL.
I love that Dr. Mumper stresses that these children have a unique biochemistry that needs to be studied and treated appropriately. Evidence Based Medicine at it's best. A major concern I have with the current standard of care for autism is the lack of knowledge by most physicians on the comorbid disorders our children have and their flippant use of antipsychotics, antidepressants, etc. Thank goodness we have doctors who are actually listening to the parents and reporters like Dan who are open and intelligent enough to educate themselves on such a complex issue.

[Twyla]

Thank you so so so much, Dr. Liz Mumper, for your incredible work on many fronts, and to Dan for this article.

[Tim Kasemodel]

Media Scholar,

I would really like to know where you were going with your comment about the past and present. I can not interpet this as anything coherent.

Could you expand on this so I can get an idea of your intention so I could possibly respond?

[Media Scholar]

but also greeted with some skepticism given the AAP’s approach in the past.

--
Ummm. A couple of weeks ago really isn't "the past". It's more like the now...present....today...most likely next week....the week after that.....and so on.