A SHORT HISTORY OF DAN!*
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.
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.