by NOHA Honorary Member Sidney M. Baker, MD, who is in private practice in Connecticut. He has directed the Gesell Institute of Human Development, taught medical computer science at Yale University Medical School, and written extensively. His most recent book is The Circadian Prescription, Putnam Penguin, New York, May 2000.

The Defeat Autism Now! (DAN!) Phenomenon was conceived during lunch at Cobbs Mill Inn down the street from my home and office in the winter of 1994 when Bernard Rimland was paying me a visit. Over our salad and salmon I said that I was learning some things - thereby discovering my ignorance - about the immunologic and biochemical abnormalities of the autistic children who had come to make up a substantial part of my practice. Couldn't we get together a small group of smart people to brainstorm the subject? Bernie had had the same idea and within minutes he had a list of just the right smart people to form the nucleus of such a meeting, which was to include parents, clinicians and researchers - some of the participants representing a combination of parent/clinician or parent/researcher.

We agreed that the focus of our efforts would be the biomedical aspects of autism. Not that educational and behavioral and sensory integration and communication aids were less important! Just that we had questions that could best be raised within a group with skills in the biomedical field. Our first call that day was to Jon Pangborn, PhD, who agreed enthusiastically that such a meeting would be a good thing. A meeting was put together for Dallas in the summer of 1995 with funding from the Autism Research Institute (ARI) and specific, generous contributions from a few individual parents.

It is the best meeting I have ever attended. From Friday evening until Sunday afternoon a diverse group met and listened with ears for seeking consensus.

Many of us were meeting one another for the first time. Most of us were used to scientific gatherings where papers are read to applause and criticism within the bounds of an academic culture less like brainstorming and more like barnstorming. In Dallas we had very little performance and a lot of dialog in which just about everyone seemed to get it that we were there to find common ground. Now, five years hence, it is as if I have hiked out of the woods above the timberline and can look back to the now distant spot where we parked the car, laced up out boots and set out in the fresh morning air with ideas, but no clear picture of what the climb would reveal. The ideas of DAN! 1995 have held up very well as we have gained some altitude and with it a better understanding of the landscape we set out to map five years ago. Here is a listing of those present and some of the ideas they presented.

1. We agreed that Autism spectrum disorders appeared to be increasing at an alarming pace.

2. The work of one of our members, Reed P. Warren, PhD, Professor at Utah State University, whose death now leaves us bereft of a leader in the immunogenetics of autism, showed the chromosomal basis that we presume to be the basis for the immunologic difficulties at the heart of autism and related problems.

3. Jon Pangborn's quest for answers that might help his son had led him to become a true expert in abnormalities in amino acid chemistry found in autistic kids. He contributed his data showing sulfur-amino acid deficits that contribute to the problems that our children have ridding themselves of unwanted molecules. He also pointed out the accumulated evidence for a pervasive problem in the metabolism of zinc and selenium as well as dietary dipeptides.

4. Kalle Reichelt of Oslo and Paul Shattock, PhD, of University of Sunderland in England brought the question of gluten and casein sensitivity into sharp focus and made it clear to the clinicians that failure to encourage parents to take the unwelcome step of getting their kids on a gluten- and casein-free diet would deprive them of a diagnostic step that could make miraculous changes in some children and gains in others that more than justify continuing the diet.

5. Rosemary H. Waring, PhD, of the University of Birmingham in England presented her data on the deficiency of a particular enzyme involved in detoxification as well as anabolic (tissue building) activities: phenosulfotransferase.

6. Sudhir Gupta, MD, PhD, Professor of Medicine, University of California, Irvine - one of the worlds foremost immunologists, teachers, and one who listens to mothers, presented the evidence to complement Dr. Warren's immunogenetics in showing the many ways in which autistic children as a group express immune defects.

7. William Shaw, PhD recounted his adventures with the scorn of colleagues impatient with his finding and reporting microbial organic acids in the urine of autistic children demonstrating that alterations in gut flora were not only a core issue - presumably as a result of antibiotics - but could, properly treated, lead to dramatic clinical results.

8. Billy Crook, MD, Bob Sinaiko, MD, and I voiced our strong clinical evidence that antifungal therapies yield dramatic results. That our patients had a high incidence of gastrointestinal and immunologic difficulties and that many parents reported associations between the onset of their children's problems and immunizations and antibiotics.

9. Michael Goldberg reminded the group that we should stick to strict research methodology in pursuing the goal of convincing the academic community to look at autism in the light of the findings discussed in the group. He further introduced the notion that viral infection was a likely trigger for many of the children who appear to be in a persistent state of immune activation.

10. Hugh Fudenberg, MD, described his work with transfer factor used as an immune modulator in significantly improving cognitive function in autistic individuals.

11. Stephen G. Kahler, MD, of the department of Pediatrics at Duke reviewed for us the known biochemical and infectious (e.g. congenital rubella) associations with autistic syndromes.

12. Stephen M. Edelson, PhD, updated us on the findings of Dr. Rimland's database of demographics.

13. Richard Kunin, MD, gave us insights from his orthomolecular practice.

14. Lisa S. Lewis, PhD, gave us a parental perspective on gluten and casein free diets (and went on to publish her very useful guide Special Diets for Special Kids.)

15. Portia Iversen and Candace F. B. Timpson helped the group keep focused on our reason for being there - to forge a consensus about research priorities and a document that would serve to guide parents through the growing maze of biomedical options.

16. Richard P. Huemer, MD, Kenneth N. Sokolski, MD, Constantine A. (Gus) Kotsanis, MD, Jay Lombard, MD, provided important insights from their clinical specialties and Dr. Kotsanis entertained and fed us at his home where we continued our many conversations late into Saturday evening.

By Sunday the spirit of the group was both hard working and mellow. It did not take much goading on the part of Dr. Rimland for us to settle down to our two priorities: to promulgate a written document that could give parents a sense of biomedical priorities as regards evaluation of their children and to decide on research priorities other than the individual scientific agenda of those present.

Lively discussion, some chalk, and a blackboard produced a working model of the interrelationships among the seemingly disparate elements that had been brought to the table. Basically we put forth a picture of autism as something gone wrong in the triangle formed by the immune system, the central nervous system, and the gut. The gut is the immune system's biggest client and the immune system and central nervous system are partners (one might say a functional unity) in the organismal functions of perception and memory. The immune system recognizes the environment on the molecular level, and the central nervous system does so on the macro level, but the function of the two systems, which appear to us to be anatomically quite distinct, is the same.

The diagram of our consensus is presented in the publication: Biomedical assessment options for children with autism and related problems. A consensus report of the "Defeat Autism Now!" (DAN!) Conference, Dallas, Texas, January 1995, by S. M. Baker, MD, and Jon Pangborn, PhD, which has now been twice revised.

The DAN! 1995 conference recommended as a research priority that someone put together a detailed database to include the clinical and laboratory data of children under care for evaluation and treatment of autism spectrum disorders. I had a background in computer science and was designated to receive the support of ARI in creating the software that would help collect, store, and retrieve these data. I have accumulated data on my own patients whose care called for taking a careful history and the performance of various laboratory tests and will be able to make this data available to parents, clinicians, and researchers in the coming months.

Annual DAN! Conferences have been held since 1995 with attendances of 100 in Chicago in 1996, 250 in San Diego in 1997, 900 in Cherry Hill, NJ in 1998, and 1200 in Cherry Hill in 1999. In 1999 a conference modeled on the DAN! spirit and biomedical ideas was held under the auspices of Georgetown University to focus on parallel issues in children with Attention Deficit Disorders.

Into the midst of the DAN! Group we have several notable new members: One is Andrew Wakefield, MD, whose findings support a connection between the administration of live viral vaccines (MMR) and the immunology, neurology, and gut problems of autistic children. His findings of persisting live measles vaccine virus in the gut-associated lymphoid tissue of children have heightened concerns of many parents and some scientists about vaccine safety for some children. Another is Candace Pert, PhD, the leading neuroscientist whose popular book, Molecules of Emotion, tells the story of the discovery of receptor sites in neural tissue that give a basis for understanding how viruses, peptides, and other potential carriers of false messages can disrupt the rhythms of consciousness.

DAN! is a phenomenon that has brought to full circle an impulse launched with the 1964 publication of Dr. Rimland's book, Infantile Autism, in which he challenged the notion that this mysterious and devastating illness was caused by "refrigerator mothers." It was the year of my graduation from Yale Medical School where my teachers professed the dogma of the psychological causes of autism along side the concept of the "schizophrenogenic mother." The professional pronouncement of such responsibility for the illness of their children devastated families with guilt that left scars that last for generations.

Dr. Rimland's book and his subsequent leadership in listening to families, fostering communication and research, and keeping a sense of humor in the face of the disaffection of his colleagues has brought us to a new day. We in the DAN! movement are struggling to keep our consensus from becoming a new dogma while we continue the parent-clinician-scientist dialog that Dr. Rimland initiated.

* NOHA Honorary Member William J. Walsh, PhD, spoke to me with great enthusiasm of the work of three NOHA Honorary Members: Sidney M. Baker, MD, Jon B. Pangborn, PhD, and Bernard Rimland, PhD, as the initiators of the exploding interest in the biochemical bases of autism. Responding to my request, Dr. Baker kindly wrote "A Short History of DAN!" for NOHA NEWS. -Marjorie Fisher

Article from NOHA NEWS, Vol. XXV, No. 3, Summer 2000, pages 1-3.

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