Martha Herbert, MD, PhD, is an assistant professor of neurology at Harvard Medical School and a pediatric neurologist at Massachusetts General Hospital, where she is the director of the TRANSEND Research Program. Dr. Herbert’s book, The Autism Revolution: Whole-Body Strategies for Making Life All it Can Be, was published in March of this year and is featured in the August/September issue of Autism File magazine in an article by Gayle DeLong. Autism File Editor-in-Chief Polly Tommey recently had the opportunity to ask Dr. Herbert some questions regarding research, treatment, and the potential role of vaccines in the development of autism.
Polly Tommey: How did you first become involved in working with individuals diagnosed with autism?
Martha Herbert: I started seeing patients independently in 1996 in a neurology clinic in a psychiatric hospital. My patients included kids and young adults with various kinds of neurological and neurobehavioral problems such as headaches, seizures, behavioral-control problems, obsessions, and tics. I had been trained to perform complex workups to exclude underlying causes such as genetic mutations and inborn errors of metabolism. Most of my patients did not have any of these problems, but I found myself noticing a lot of everyday issues like rashes, food allergies, and gastrointestinal disturbances. As time went on my practice started including a higher proportion of kids with autism. They were not, however, unique in having medical issues in addition to their behavioral issues.
At the same time I was involved in studying brain scans from a group of children with autism. Although my research mentors had suggested that we would find specific regions of the brain’s gray matter associated with control of “autistic behaviors,” we did not find these but instead found more widespread changes - brains larger than average, more white matter, widespread shifts in brain asymmetry – though these differences were subtle.
Overall, my experience both with seeing patients and with looking at and measuring brain scans was different than what I had been led to expect. This got under my skin more and more. Around the same time, two other lines of research also changed my thinking. The first was about the contribution of environmental toxicants to behavior changes. The second was identification of metabolic differences in various body fluids of children with autism. These areas of inquiry made me realize that we had probably misclassified autism – that it was not just a brain problem, but a problem involving the whole body. The implications of this research included the possibility that these problems could be treated and changed. This pushed me to try to learn more about autism and how we can help.
PT: What are the most important points to share with parents and caregivers of newly diagnosed young children with autism?
MH: Here are some things I would like every parent and caregiver to remember:
- Your child is not broken but challenged. More and more evidence points to autism being a state that can change, rather than a trait that is stamped in.
- What we label as “autism” is the result of a cascade of events, a pile-up of risk factors that increases your child’s “total load” of challenges to a point where their whole system is overwhelmed. Think of autism as how the brain and body act when they are overwhelmed in a variety of ways.
- When you understand that your child most likely “snowballed” into autism, you can start to see how you can “dial it back.” You can do this by reducing your child’s total load and increasing their resiliency. In this fashion you can start to peel away the levels of dysfunction that contribute to the autism.
- Genes don’t cause autism – they contribute to the risk for autism. Aside from a few very rare exceptions, no one thing causes autism by itself – it’s a combination of things – the total load of genetic risk plus environmental triggers.
- Your child may be unusually environmentally vulnerable – more susceptible to toxic and infectious challenges. This can be due either to genetics or to environment (either too many challenges, too little nutritional or other support, or both). To be prudent you should optimize your child’s environment as much as you can.
- To do this, you need to remove stress, infection, toxic, and allergy triggers that cause harm, and to add good nutrition and constructive experiences that support health and vitality.
- Toxic exposures, stress, infections and allergy triggers all cause harm. Toxins can be found in household products, personal products, air pollution, food additives like pesticides and food dyes, and more. Minimize your child’s and your family’s exposure to these as much as you can.
- You can support your child’s (and your family’s) health and vitality through a vibrant diet of unprocessed fruits and vegetables of many colors, plus nuts, healthy meats, fish, and beans. You will need to take into account your child’s food sensitivities and tastes, but “nutrient flooding” should be your theme. Your child’s metabolism needs the highest quality ingredients you can manage.
- Your child also needs regular, age-appropriate amounts of sleep and vigorous exercise. All of these are important for the brain and the body, including its metabolic and immune health.
- Look out for hidden problems. Challenging behaviors may be clues to underlying pain or medical problems that your child can’t tell you about – even if they can talk. Search for problems in your child’s inner and outer environment that may have solutions.
- Your child is likely to be much more stress-intolerant than you can imagine. Rushing, lots of noise, and chaos can lead to meltdowns. Taking things more slowly and breaking them down into small steps may take more planning and thought, but it can make the day go more smoothly, and progress more steady.
- Little things are important – every day is made up of lots of little things and some choices are better than others. Your choices at each moment can add up over time. And sometimes making healthy little choices can have big impacts quickly.
- See your child’s potential and support it. Don’t try to “fix” your child; try to enter their world and expand it lovingly.
- Taking care of yourself is good for your child as well as for you.
- Hang in there – you will learn much and build a new community as you work out how to handle your situation.
PT: Some treatments for autism are very successful for some individuals but not for others. What advice do you have for veteran parents of older children who haven’t shown much response to biomedical treatments showing success for others?
MH: First, one treatment is almost never enough. You are trying to reshape a whole system and this takes persistence over time. It’s important to keep in mind:
- Things that didn’t work when your child was in one state of health may work later on when other things have improved or stabilized. Just because giving up or adding X didn’t work when he was a toddler doesn’t mean it isn’t worth trying again now that he’s in grade school.
- It’s important to give treatments a serious and disciplined trial. Some changes, like going gluten-free, can take months to have an effect, because gluten and its impacts linger in the system, and because so many foods have hidden gluten. Every time you cheat you go back to day one and have to start the clock all over again. For many interventions, “halfway” is going to fail and you need to be totally rigorous.
- Remember that we are each unique, and that each person has their own “autism.”
- Going for optimal health can make a big difference in stress levels and in quality of life and level of function, even if it doesn’t “fix” the autism.
- Eating well has a great chance of improving function and making other things go better. Sometimes skilled medical or metabolic sleuthing can uncover previously unknown vitamin or mineral shortages and other leverage points that can make a difference to your particular child.
PT: What in your opinion have been the most significant developments in terms of autism research since the numbers of those diagnosed with ASD started to rise so dramatically a couple of decades ago?
MH: The advance of a whole body and systems approach in autism is occurring in parallel with advances in systems biology more generally:
- A growing body of research is showing the presence of chronic active health and tissue problems in autism – particularly inflammation, immune problems, mitochondrial dysfunction, and oxidative stress.
- We have moved from looking for a few genes or a few brain modules to appreciating that many different factors are interconnected.
- While hundreds of genes may be involved, most have relatively modest contributions to risk. People with autism may have gene mutations that their parents don’t have, and these mutations may come from environmental impacts across more than one generation. Autism may be one of many manifestations of destabilization of our genome.
- Research is starting to show that the brain network patterns affected by autism can change and improve under certain circumstances.
My new website, www.autismWHYandHOW.org, is building up a set of overviews of various approaches to autism and links to pertinent scientific literature and other resources.
PT: Despite denials from drug companies and most in mainstream medicine, a growing number of parents are convinced that their children’s autism was triggered by vaccines. Where do you come down on the vaccine/autism link?
MH: In order to answer this question I need to put it into context. The rise of systems biology and the understanding of gene-environment interactions place into a modern light the old debate between Louis Pasteur with his germ theory and Claude Bernard, who said that it is the “milieu” or in French the “terroir” that creates vulnerability to illness. My orientation toward placing physiology in the center of my understanding of human biology and my sense that it is the “total load” or “allostatic load” that ultimately contributes to sickness shows my sympathy with Bernard’s physiological approach.
In the vaccine situation we have a combination of a medical intervention designed within the “germ theory” paradigm and the bodies of children who are living in a toxic, polluted “terroir.” These children then eat a nutrient-depleted and additive plus pesticide-laced processed food diet which further degrades the “terroir” and thus their resiliency. So we have a public health policy that is trying to protect the compromised health of our children by targeting the germs but not the milieu.
Meanwhile the knowledge upon which our existing vaccine policies are based has pretty much been based on a set of measures that does not yet incorporate the recent explosion of research technologies that allow us to measure diverse subtle changes in physiological and immunological function that were never measurable before. These measures are still mostly limited to research and not yet part of clinical medicine or public policy, but they open vast new horizons for understanding.
In addition we have growing talk about so-called “personalized medicine.” We are learning that there can be individual vulnerabilities, perhaps from genetics, perhaps from a parent’s health status, accumulation of health challenges for the child, or other causes, which make some children less resilient than others. Our public health policy tends to treat all children as identical while science is showing us how different they are from each other. We need new ways of designing studies so we can dig beneath the “disease diagnosis” labels we have been using to categorize people – and new ways of practicing medicine so that the whole and unique patient is kept in mind during testing and treatment.
New findings from fields like genomics, metabolomics, and nutrigenomics are opening the way to diagnostics that will someday allow us to discern which children can handle vaccines without a problem and which should be on a modified schedule. An interesting body of peer-reviewed published papers on “vaccinomics” and “adversomics” from vaccine researchers at the Mayo Clinic in Rochester, Minnesota is addressing these issues, showing how we can move over time to more effective and at the same time more individualized approaches to protecting people from infectious diseases.[i]
In the meantime, I think a healthy child should be vaccinated according to your healthcare provider’s recommendations. If I were concerned about my child’s health or vulnerabilities, I would work as I described above to reduce total load and stress and shore up his or her milieu, and I would talk to my doctor about whether it made sense to follow a modified schedule. It is important to remember that unvaccinated children also sometimes develop autism.
Over the long haul the resolution of vaccine controversies will need to address both serious risks of infectious disease to individual and population health and also the “milieu” or the “terroir” – that is, whole-body health and not just the infectious trigger. To do this, I think it will be necessary to transcend the “germ theory” model and move to a more systems-oriented “milieu” or “environmental” model, which incorporates an understanding of and respect for the dangers of “germs” but also puts them in their full “milieu” context.
What does this mean from a practical point of view? We need to be much more aggressive about promoting the health of individuals and of the population. A healthier population will be less vulnerable to infection – there is a lot of data to support this. Healthier individuals have stronger immune systems, and more and more data supports this too.
I think that a push for safer vaccines needs to go hand in hand with a push for a safe and healthy food supply and a non-toxic world. I also think that the “push for safer vaccines” might be better phrased as “the push for incorporation of more sophisticated understandings of germ-physiology-immune system-environment interactions into healthcare practices and public policies so we can improve how we protect individuals and the population from serious infectious disease.” It might be more possible to find common ground on some of the immediate issues when they are framed in this more encompassing context.
Having said all that I do want to say that there are many more things involved in autism than vaccines, and being able to stay connected to these other things will help our children do the best they possibly can.
PT: In what direction do you see the future of autism research headed and what do you believe are the most promising areas of investigation?
MH: At this point I feel it necessary to make a distinction between where I think autism research should be headed and where it is actually headed. I would like to see more integration of pathophysiology research with brain research – for example, what does mitochondrial or immune dysfunction or oxidative stress have to do with compromised brain connectivity? Personally, I am gearing up to study a) whether these physiological problems contribute to brain function problems, and b) whether improving the body’s health also improves brain health. If we can show that these are true, this would have vast scientific and also vast public health implications.
I think that research like what I propose to help people understand that we are dealing with an integrated whole body-brain-environment system is of great strategic importance. Until people “get” this framework it will remain hard for us to target this both practically and scientifically in a coordinated fashion. We need to make the transition to this more comprehensive viewpoint to avoid floundering in our overall research efforts for quite a while longer.[ii]
One of the best ways parents can help move things, I think, is to document their child’s path – which treatments seem to work and which don’t. If done collectively by tens of thousands of parents, patterns will start to emerge. It will take a lot of work to set up the infrastructure to make this possible, and a lot of community-based discipline to use the infrastructure well. But I think a “treatment-guided research” approach[iii] is necessary to provide the kind of data we need to help ourselves and those who come after us.
[i]For example, Poland, G. A. (2010). “Vaccidents and adversomics.” Vaccine 28(40): 6549-6550 and Poland, G. A., I. G. Ovsyannikova, et al. (2009). “Adversomics: the emerging field of vaccine adverse event immunogenetics.” Pediatr Infect Dis J 28(5): 431-432.
[ii] Herbert, M. R. (2008). “Learning from the autism catastrophe: key leverage points.” Altern Ther Health Med 14(6): 28-30. http://www.marthaherbert.org/library/Herbert-learningfromAutismCatastrophe.pdf
[iii] Herbert, Martha R. (2008). “Treatment-Guided Research: Helping people now with humility, respect and boldness.” Autism Advocate 50(1): 8-14. http://www.marthaherbert.org/library/Herbert_TGRI_April08_ASA-Advocate.pdf