by Martha Herbert, Memorial Day Weekend, May 2012
Attending yet another conference I find myself thinking about paradigm whiplash. It’s hitting me again.
Why there are so many different points of view in autism that don’t seem to overlap? The IMFAR meeting May 17-20 (International Meeting for Autism Research, a major academic conference) was full of people aiming to find biomarkers for autism — looking mainly for genetic, neurochemistry, brain and behavior. At AutismOne this week (5/24-27) and at the ARI (Autism Research Institute) conference at the end of April – we find lots more parents, a mostly different group of scientists, professionals and paraprofessionals , and more focus on biology beyond genetics: in particular, metabolism, immune system, nutritional problems – but not so much work on the brain.
Both conferences are brimming with new science. Each scientific subculture produces lots of support for why they approach things the way they do – yet the overlap, the interplay, is weak.
It doesn’t work for me to just stay inside any one of these subcultures. That just makes the paradigm whiplash worse. Each has so much to offer, yet each alone is not enough. Inside any single paradigm it is painfully apparent to me that important things are being missed. This discomfort drove me to develop my website www.autismWHYandHOW.org , so I could put the different paradigms side by side in one place, and contribute to genuine discourse.
What gets me past “paradigm whiplash” is a “higher synthesis” – from the strengths of each point of view, each subculture. And I organize my “higher synthesis” around what we can do RIGHT NOW to help the most people possible. This is what I aimed for in my book The Autism Revolution.
I’d like to see the careful attention to study design, the meticulous refining of questions that we see so much of at IMFAR — and the ample research funding that makes this possible — be available on the side of the fence where families with autism live every day. Why is it that our important science is so often divorced from the daily experiences of autism and from helping people with autism live healthier lives? Why is it that the scientists and practitioners who sincerely make simple, safe biology-based attempts at healing the medical physiology of people with autism are so often dismissed as quacks and charlatans?
I’d like to see the IMFAR people learn from these pathophysiology (that is, biology challenges beyond genetics) people. I’d like to see these IMFAR scientists engage with the whole-body, whole-brain, whole life of each person with autism. This means both each person as an individual, and each person as complex. Rather than staying just at the level that is most familiar to us, we all need to cultivate a mental zoom lens that can cruise in and out from the hidden levels molecules and metabolism to cells in brain and body, and from there to behavior and social/physical environment. Considering that all of these levels have documented challenges in autism, we could do our best to help people with autism if we could form a comprehensive team that encompasses all of these levels functions collaboratively. This is what will allow a synthesis of what the high-level scientists and the committed therapists are doing every day to get each person with autism as healthy and functional as possible.
Our common goal should be to help people with autism achieve their optimal potential (and even recover in some cases) by removing all obstacles possible and providing supports tailored for each person. This aim would help ground the IMFAR research in things that are actionable right now; and help us learn as much as possible from the on-the-ground successes of therapists, nutritionists, wellness-oriented doctors and parents.
This synthesis is possible, and even happening. Geneticists now see that though genes may be handed us from birth, they get turned on and off by changes in what we do or what we are exposed to. Even more, now that symptoms of syndromes associated with autism, like Rett and Fragile X, have been reversed in mouse models –– many scientists are starting to realize what observant clinicians and parents have already noted — that autism is a changeable state, not a hardwired trait.
More people are also starting to realize that autism is not a single “thing,” but a composite of many interacting systems – and that we can look for ways to help at many levels – aiming to help health and functioning. When the parts get better the whole works better too. For example, studies are also showing that metabolic and immune problems can increase risk. These kinds of problems can be helped RIGHT NOW by getting people with autism away from restricted diets and processed food and maximizing the nutritional content of diet. There is a flood of scientific literature supporting the role of diet in improving the kinds of physiological/biomedical problems people with autism face.
A higher synthesis for me would be:
- Turning clinical activities into scientifically usable data – not only behaviorally oriented interventions, but also treatments that address the individualized whole-body issues of people with autism as into scientifically usable data.
- Getting an aggressive public health program in place so that every pediatrician and primary care doctor can and will help every patient in their practice optimize their health and reduce their risk. And a parallel campaign ensuing that schools serve healthy food and parents have access to abundant low cost organic produce and meat/fish/poultry, so feeding their children helps rather than compromises young people’s health. Tracking the impact this has on how well kids do in school, in therapies and at home.
- Convincing the research establishment to turn its attention and resources to questions raised by these incredibly common metabolic, immune and/or nutritional problems, and the fact that addressing these problems is one of the few means we have for helping people right now.
- Integrating genetics, brain, sensorimotor, behavior and pathophysiology investigations so that all aspects of individuals with autism can be understood in relationship with each other and so that help is coordinated and as effective as possible.