Reflection on the MacNeil PBS Autism Series and NYT Wakefield article

Guest Post by Michael Lerner, PhD, President, Commonweal, Co-Coordinator of Collaborative on Health and the Environment’s (CHE’s) Breast Cancer Working Group, Co-Coordinator of CHE’s Cancer Working Group, Co-Coordinator of CHE’s Integrative Health Working Group

The crash and burn of an autism guru. Andrew Wakefield has become one of the most reviled doctors of his generation, blamed directly and indirectly, depending on the accuser, for irresponsibly starting a panic with tragic repercussions: vaccination rates so low that childhood diseases once all but eradicated here have re-emerged, endangering young lives. New York Times [Registration Required]

This article in The Times and the Robert MacNeil autism series on PBS are both testimony to how the public and scientific dialogue on autism is changing.  Martha Herbert of Harvard was a leading voice in MacNeil’s documentary.  Herbert is a senior advisor to CHE-Autism, and one of the most distinguished proponents of the new paradigm of autism research and treatment.

When MacNeil on PBS gives such strong authoritative visibility to Herbert’s perspective, it is clear that the field has shifted in a significant way — and shifted in the specific direction that many CHE Partners have believed was warranted for many years.  So it is a good moment to reflect on what we are witnessing and lessons learned.

We are witnessing a decisive shift toward mainstream researchers recognizing a contributing role
of environmental factors interacting with genetic factors in ASD.  There is also, specifically, more mainstream recognition of the contribution of GI disorders to symptomatic distress in some ASD spectrum children — and the benefit of dietary change for some of these children. The debate continues over an essentially linguistic question of whether the dietary shifts that reduce symptomatic distress represent a treatment for the ASD disorder or simply a relief of GI distress unassociated with ASD. Those who argue the latter are on shaky ground because of the scientific evidence of strong gut-brain connections. Nonetheless, the linguistic conceit that this is “just” GI relief unconnected to the ASD disorder is a step forward since it allows mainstream clinicians to treat the gut disorder without needing to accept that for some children this may indeed affect the theoretically separate ASD disorder as well.  This reduces human suffering — the key purpose of the whole enterprise.

With this middle ground increasingly established, despite the linguistic variants of interpretation,  the remaining controversy shifts increasingly back to the vaccine debate, which has always been more hotly contested.  Part of that debate is whether vaccines contribute to the gut disorder.  Increasingly, we see some mainstream researchers agree that the role of vaccines in a subset of ASD children “deserves further study.”  This debate is, of course, so hot because of the concern of pediatricians and public health officials with declining vaccination rates and associated health dangers.  Again we see movement toward middle ground:  reformulation of vaccines, teasing apart which vaccines have a higher priority, teasing apart timing of vaccines, dis-aggregation of vaccines, and exploration of integrative approaches to enhancing resilience both to disease and to vaccines.

The three health fields I have studied most closely over the past three decades — (a) the role of nutrition in the learning and behavior disorders of children, (b) integrative therapies for cancer, heart disease and other conditions, and (c) the autism debate all demonstrate that there is a classic evolutionary process in these debates:

1.  At the start, the hypotheses are very boldly stated by proponents and denounced as quackery by the mainstream.
2.  As the debate sharpens, the claims on both sides are subject to closer scrutiny.
3.  The scrutiny leads to less global claims by some proponents and more acceptance of the strongest differentiated claims
by some mainstream researchers, which slowly develops a consensus middle ground.
4.  Some proponents of the original hypotheses and some mainstream experts migrate cautiously toward this middle ground.
Frequently, mainstream researchers develop a linguistic reformulation that enables them to reclaim the middle ground in a form
that leaves the dignity of the prior paradigm somewhat intact.  For example, on the MacNeil documentary, we hear repetition of
the conventional statement that “autism is a genetic disease,” followed by the recognition that genes and the environment interact —
which creates a science-based space in which the environmental/nutritional claims can be absorbed into the mainstream “genetic” paradigm.
5.  Likewise, proponents also differentiate their claims.  For example, the vaccine claims in ASD were recognized by some proponents as a distraction from the deeper claims for a new paradigm of autism research and treatment.  They did not abandon the hypothesis that the vaccine claims might be true for some children.  Rather, they realized that the skillful approach toward building consensus was to focus on the gut disorders and related issues. Common ground on gut disorders is far less controversial because it does not threaten either public health or pharmaceutical interests, and has moved forward more rapidly than common ground on vaccines.
6.  Finally, often after decades, the middle ground is absorbed as part of the mainstream.  The whole process may take 20 to 50 years.  As some have pointed out, resolution often comes as the original proponents and critics retire or die.
7.  ASD children and their parents can’t wait 30 years for the value of treating gut disorders to be accepted.
Nor can heart patients wait 30 years for integrative therapies to be accepted. That is why the dynamic of integrative and environmental health in relationship to mainstream positions is what it is. In both integrative and environmental health, new claims are greeted with hostility because they threaten established interests and beliefs. A struggle will be necessary for as long as integrative and environmental health remain fundamentally external to the mainstream paradigm.
8.  But even if, some day, a truly integrative and environmental paradigm of health becomes the mainstream paradigm, the difficulties will not end.  Even if we imagine that tomorrow, the integrative and environmental health paradigms were fully adopted, the trade offs among competing personal and social goods would not disappear.  Take an example from CHE EMF:  the evidence on the health risks of cell phone use is unquestionably growing.  We are engaged in a vast experiment with a billion cell phones being held against the skulls of people all over the world.  To say nothing of the increase in many other EMF exposures.  But if you look at the benefits of cell phones for people around the world, they are enormous.  And they often accrue especially to poor people in the developing world.  The adoption of the new paradigm of integrative and environmental health would bring many benefits in terms of guiding the design for a better world.  But the trade offs among competing social goods would remain acute and vigorously contested.

Our view at CHE is that the science is our friend, that civility promotes reasoned exchange about the science, and that if we avoid questioning the motives of those on both sides of these issues, and treat all with respect, we facilitate the movement toward science-based consensus. Civility is actually, in my view, a minimum standard.  Civility is a proxy for kindness.  And kindness is a core human value, as a beautiful new book by Pierro Ferrucci, The Power of Kindness, with an introduction by The Dalai Lama, makes abundantly clear.

I, for one, believe that we have just taken a major step forward in the autism debate, and that the MacNeil series and The Times report both represent evidence of that progress.  And that progress is important in all fields of environmental health and integrative medicine (which are natural complements to each other).  To cure occasionally, to alleviate sometimes, to comfort always –and to prevent wherever we can, to build resilience wherever possible.  This is the heart of medicine and public health.  Reducing unnecessary suffering.  James Taylor said it well in his song about Martin Luther King:  “We are bound together/ All men and women/ Living on this earth/ By our desire to see the world become/ A place where our children can grow free and strong.”

Peace to all in these holy days in so many traditions, which celebrate the great cycle of death and rebirth — and the power of kindness.

This post was first circulated to the CHE list.