The DAN Conference

by Siegfried Othmer | November 3rd, 2005

Last week Sue and I were invited to attend the “Think Tank” meeting of the medical brain trust behind the “Defeat Autism Now” (DAN) movement. The group wanted to hear about neurofeedback. We were there at the invitation of Dr. Jaquelyn McCandless, psychiatrist and author of the book “Children with Starving Brains.” DAN was started in 1994, probably before we had our initial successes in working with autistic children. Bernard Rimland was the motive force, along with Sidney Baker, MD, and Jon Pangborn, a chemical engineer and parent of an autistic child. The first meeting of docs trying to make sense of autism attracted some 35 participants. The current Think Tank had more than sixty invitees, but this was only a precursor to the main conference that attracted some 1200 people to Long Beach, CA.

DAN has emerged as a powerful axis between a large cadre of activist parents and committed docs who are not blinkered in their vision. There is no question that this all moves forward on a virtual army of parental foot soldiers, guided by some skilled organizational talent at the top. The Autism Research Institute under Rimland now has some significant resources that it can pour into critical research that the larger medical community has been neglecting.

I found myself at many turns comparing the manifest success of this organization with what has occurred in our own field. The primary difference is that autism provides a singular focus for the organization. Having an autistic child in the family focuses the mind as little else could. By contrast, our focus is diffuse, covering many areas of mental health. Secondly, there is no real “cure” for autism, so interest in the organization is sustained over the long term. By contrast, in our own work we tend to graduate people out of neurofeedback, so there is little motivation for a continuing connection. Ironically, this factor is also what sustains organizations such as CHADD. If stimulants actually solved the problem of ADHD, that organization could not maintain itself. Support groups depend on people who still have the problem.

But there are similarities as well. I was somewhat taken aback by the degree to which the docs at the Think Tank felt beleaguered by their outsider status. In fact things were somewhat worse for them because many are in academic settings where the hostile forces are arrayed everywhere against them and hold the Department Chairman position as well. Elizabeth Mumper, MD, one of the main speakers for the group, has just been told that her appointment at the University of Virginia Medical School will not be renewed. This occurred just weeks after a conference on autism at which she presented her views. The hazing that docs experience when they step out of line is much more palpable than the mere neglect that we get for our troubles.

Jeff Bradstreet, MD, had first presented to the Think Thank a couple of years ago on neurofeedback, and had been seriously rebuffed by the group. But the ice had been broken, and by this year a number of other participants had already adopted neurofeedback, and yet others were quite open. All were no doubt relieved that we gave a creditable presentation. My talk was on the second day, so I had a chance to accommodate my presentation to what I had already heard. A lot of the slides that I had cut out to stay within my timeslot of 45 minutes had to go back in, so I ended up showing some 90 slides in 45 minutes. I had found out in the first day that most of these people talk faster than I can think—particularly about biochemistry. My presentation was also strengthened by slides kindly offered up by Robert Coben on his recent research on autism.

The mindset of the group, and hence of the whole organization, is very much oriented toward biological remedies for autism. The role of behavioral methods is politely acknowledged, but that is just not their bag. This must be what accounts for the lack of attention to neurofeedback. Sue and I had made a pilgrimage to chez Rimland in San Diego a number of years ago, and he seemed quite interested. Parental reporting on the ATEC form by which Rimland was tracking efficacy for all relevant therapies should have been sufficient to sustain that initial interest. Why was this not happening?

The idea that Rimland was lumping neurofeedback into the category of behavioral techniques that were oblique to his interests is contradicted by the fact that he has been quite enthusiastic about Auditory Integration Training for some time. Here is perhaps the hook that we need to get neurofeedback looked at as a biologically-based technique for organizing these compromised brains in the frequency and timing domains. I did spend a bit of my talk making just that case: talking about reorganizing brain networks in the bio-electrical domain is not something that psychologists should be naturally at home in any more than MDs. We are all at the starting gate here.

One factor bearing on this discussion is no doubt the fact that the entire field of autism research was set upon the wrong foot by a psychiatry that considered it the result of “refrigerator mothers.” Bernard Rimland’s very first venture into the field was his book on “Infantile Autism” that he wrote in 1964 to call that hypothesis into question. (He thought that would be the end of the matter, but then parents starting calling him to solicit his advice on treatment.) Moreover, this pernicious hypothesis did not even die upon exposure, and even survived Bruno Bettelheim’s death a few years ago. A recent program on refrigerator mothers on PBS reported that pediatricians could still be found in the nineties who dismissed mothers of autistic children as causative agents. Incidentally, Bettelheim based his model of the refrigerator mother on his own experience as a child with concentration camp guards during WWII. I think that tells us more about the childhood experience of trauma than it does about mothers.

The second issue that gets in the way is that modern imagery work still aspires to interpret matters in terms of classical behavioral categories. The psychiatric or mental illness perspective still dominates the discussion, in response to which the attitude of this group is that we have too much psychology (!) and not enough biology in the consideration of autism. Buttressing the mental illness model is the modern fetish of genetic causation, which of course also ties one’s hands (and freezes the mind) when it comes to remediation. A genetic predisposition leads a child to the ineluctable unfolding of the mental illness of autism in the first years after birth. All the remedies are likely to be primarily palliative. A final consideration is that all the drugs in inventory have only slight influence on symptom expression in autism, which makes the pharmacological colossus and the research it controls less than interested.

Of course none of this has made any sense for an awfully long time, and if scientists and medicos had the slightest capability of being embarrassed, they should be.
The fact that mothers’ bad parenting seems to have selective fallout for only some children in the family did not manage to undermine the hypothesis. Nor was the phenomenon of sudden regression into autistic behavior explainable in that manner. The huge growth rate in autism incidence over the last twenty-five years did not cause the genetic model to be discarded. And the fact that certain autistic children experienced an almost magical reversal of symptoms upon the administration of certain remedies did not succeed in undermining the mental illness model. It is all quite remarkable.

Instead we were subjected to the usual statistical tyranny that is used to mow down any nascent new ideas in medicine. Remedies that were found to be individually helpful did not show up so well in group studies (Secretin is a case in point). In this manner, all the aspiring new therapies could be successfully dismissed in turn. The DAN group of researchers in 1994 took an opposite tack. Could a greater level of understanding and clinical refinement be brought to bear on those therapies that held promise? And by looking at all the pieces of evidence collectively, could a coherent picture be formed of what was actually going wrong in the autistic child? In retrospect it is remarkable to observe the degree to which the beginnings of the lines of evidence were largely already in place at that time. It has been a matter of making each independent line of evidence more solid, on the one hand, and of weaving the web of connectivity between these ideas, on the other.

Unsurprisingly, it is the unifying perspective that is still somewhat lacking. In the modern idiom, one would like to take a network perspective on the regulation of gut function and of immune system regulation. (It goes without saying that we would also apply the network model to the understanding of the brain dysfunction that eventuates.) The relevant biochemical pathways are coming to be understood, and the weak links in autism are becoming exposed. Because regulatory networks are more webs than strands, dysfunction in parts of the biochemical chain of regulation is rarely fatal, but more likely simply more or less debilitating. The insertion of one individual remedy into this chain of dysfunction could just fortuitously happen to provide the critical piece and restore full function, but more likely it would simply provide some degree of improvement. (“If you sit on two tacks and remove just one, you do not get a 50% improvement.”) A variety of such techniques would have to be combined to restore function. Research methodology is just not geared to those sorts of investigations.

This is where the parents came in. By collecting data over the years on what has worked for parents and how well, it was trivial for Bernard Rimland to keep his finger on the pulse of what was happening in the real world, and he could do so with data that were quite plentiful and statistically robust. Biases abounded, of course, but no matter. No doubt people were more inclined to report successes than failures, for example. But it was the successes that pointed the way forward.

So where does neurofeedback come in? Martha Herbert, neurologist at Harvard, presented on the question, “Is the brain down-stream?” This question made obvious sense to the attendees because the operative model has been that the biochemical deficits seen in autism through gut dysfunction, immune system disregulation, toxic loading and oxidative stress also play out in certain brain regions known to be associated with the primary functional deficits in autism. Indeed there is evidence to that effect. But what if there is a more general disturbance of cortical regulatory mechanisms, seen more as a secondary response to the more primary biochemical deficits elsewhere? Would that be consistent with the rather specific deficits we associate with autism? One could argue, for example, that a key characteristic of the prominent deficits is that they refer to functions that are highly integrative in character. The most obvious case in point is the integration of our emotional and cognitive function; another is sensory integration; a third is the smooth or graceful organization of movement.

So with our own focus on the bio-electrical organization of brain function as the key to understanding most psychopathologies, we happen to be arriving on the scene just as the need for such a model was identified for autism. Of course we were not the first. Richard Deth, Ph.D., lectured at the Think Tank on a model that focused on bio-electrical organization of gamma rhythms and connectivity as an index to brain function. So the topic has been under surveillance already. The advantage offered by neurofeedback is that we do nothing more than appeal to the mechanism of bio-electrical organization. Perhaps there is the possibility here of separating the biochemical realm (seen as sourcing the primary deficits) and the bio-electrical realm (seen as reflecting the secondary deficits) about as much as can be expected. Complementing the bottom-up regulatory repairs done biochemically we super-impose the top-down regulatory regime of the direct training of network connectivity.

I suggested at the conference that researchers might actually want to do neurofeedback first to “clear the decks,” by analogy to attempts in pharmacology research to identify and clear out the placebo responders. Then they could proceed with biochemical interventions with more clarity. This was not well received at all, and it showed that the operative mentality here was that of the clinician, not of the fastidious researcher. Obviously these techniques all need to be combined for best effect, so why don’t we just get on with it? We already know, and Rob Coben’s data supports this nicely with his controlled study, that on average neurofeedback stacks up well against any individual remedy in the DAN arsenal. A combination should leave nearly all autistic children much better off for having taken the trouble.

I found myself profoundly relieved to find in this group so many viewpoints that are entirely congenial to our own. Up to now I have been concerned particularly with regard to autism that successful neurofeedback might serve to “crowd out” the resort to other remedies. It was obvious that many of these children are under continuing “biochemical siege,” and that our work is just a holding action against dysfunction. Yet a profound effect of neurofeedback on a particular child could cause parents to just leave it at that. We have always known that the biochemical “train wreck” simply must be addressed, and now the roadmap is at hand. Sorting out the priorities is a challenge. Said Sidney Baker: “Alleviating constipation, cleaning up the diet, and initial efforts to normalize gut flora are priorities that precede all other therapeutic options.” That is to say, “the road to good health is paved with good intestines.”

As it happens, we have routine success in alleviating constipation with neurofeedback, so here is a sufficient reason to insert neurofeedback right up front. This observation also poses a challenge to the model that “brain function” and the gut chemistry can be all that neatly divided. Why should we be able to resolve constipation before all the identified issues of gut dysbiosis have been addressed? We also know that sometimes we benefit children much more quickly and comprehensively than we have any right to expect on a model that just whittles away at symptom expression. We may never be able to resolve issues into the distinct domains of structure and of function.

In this attempt to sequentially normalize function through targeting one specific deficit after another, it is recognized that the object of therapy is not autism itself, but rather the individual child with his or her idiosyncratic dysfunctions. Autism will never yield to the more ordinary disease model. It is a paradigm for a more global condition of disregulation that neatly parallels and complements our emerging understanding of neurofeedback. In both cases we are dealing with a kind of “disregulation cascade” that must be gradually undone. The entire medical orientation here is to understand how the body is supposed to function, and to identify the biochemical deficits in regulation. Following that, it is to restore and to support the normal functions on the one hand, and to ameliorate toxic influences on the other.

This kind of integrative medicine we can ally ourselves with readily without fear of drowning or of being drowned. Here is a train that has already left the station under its own power. I see it as a force multiplier for our own professional community. In fact, for conditions such as autism I don’t see how the patient could possibly be well served except in a multi-disciplinary context, even if that context must be implemented through a virtual network rather than through shared real estate. Here we have a model in which the parent is empowered to be a full partner in the medical/therapeutic process. And finally, we have here another model that is emerging wholesomely and organically, i.e. without the tentacles of avarice and corruption emanating from the drug company Leviathan.

We exhibited at the conference and made many contacts. Next year we will hopefully not be the only neurofeedback organization to exhibit. We sent large numbers of parents to the EEG Directory to find local practitioners. If you have not worked much with the autism spectrum, we recommend Sue’s Clinical Decision Tree for guidance.

Finally, a more philosophical excursion. We have in the autistic child a physiology that is particularly susceptible to toxic exposure, and moreover one that is not particularly good at shedding toxic load. All this is well-established. The question at this conference was not one of “to Thimerosal or not to Thimerosal?” The message was “It’s not just mercury!” We are living in a toxic stew, and moreover we are sitting at the top of a food chain of biological concentrations of the neurochemically relevant agents. This observation was first brought home to me by Albert Schweitzer, back in 1961 during the campaign for the nuclear test band treaty, a time when he traced the concentration of radioactive materials in the Columbia River outside of the Hanford facility to that found in the eggs of birds nesting by the river. The concentration ratio was three million. The autistic children are our canaries, but we are all at risk, and many others are suffering. In support of this theme, Martha Herbert ended her talk with an extended quotation from Michael Lerner, editor of Tikkun, as excerpted from an article titled “The Age of Extinction and The Emerging Environmental Health Movement” The subtitle: “Will Women lead the Environmental Health Movement?”

How can we imagine that ordinary people might be able successfully to challenge the overwhelming internal logic of the global economic system because of concern over environmental health?

There is an Ethiopian proverb that when spider webs unite they can tie up a lion. The lion of the globally destructive patterns of production and consumption may one day be ensnared and ultimately domesticated by the gossamer webs of human consciousness and community action. What will happen when ordinary people, whose lives are often mortally wounded by the destruction of the biosphere, come to understand that their wounds are so often intimately related to the wounds of the earth?

What will happen when a working woman comes to a realization that her own breast cancer, her husband’s lymphoma, her brother’s melanoma, her son’s learning disability, his best’s friend’s attention deficit disorder, her daughter’s endometriosis, her niece’s cleft palate, her cousin’s chronic anxiety and panic disorder, her best friend’s severe chemical sensitivity, her best friend’s daughter’s asthma, her uncle’s infertility, her neighbor’s son’s testicular cancer, and her sister’s daughter’s childhood leukemia, may form a pattern?

What will happen when this working woman begins to understand that these new human pandemics, that affect her family and her community directly, may be profoundly connected to what is happening to the fish in the sea, the birds in the sky, and the animals of the earth?

I believe this working woman will understand that the cancers and infertility of the fish, the disappearance of the frogs, the cleft palates of the mice, the shifts in gender orientation of the birds, the susceptibility to viruses and infections of the seals, the disappearance of the songbirds, — that all this and much, much more may be telling us a story that is also our story.

The story that the birds and the fish and the mice are telling us is the story of InterBeing — the story that all life on earth is truly, breathtakingly, concretely connected right now, and that what we do to the mice of the field and the birds of the forest, we also ultimately do also to ourselves and our families right now.

I do not believe that we can hide from this story much longer. It is among the great stories of our time.

Brief Notes:

  • The only pharmacological agent that has demonstrated a benefit-to-harm ratio as high as three in autism is Risperdal.
  • One principal researcher talking with a manager at NIMH was told that if his proposal as much as mentioned the word “Thimerosal” it would be a dead letter upon receipt at the NIMH.
  • A pediatric gastroenterologist refused to see a child labeled autistic despite the obvious symptoms reminiscent of celiac disease.
  • Senate Bill 1873 would prevent parents from suing drug companies for causing their child’s autism.

Leave a Reply