by Jon B. Pangborn, PhD, ChE, Syracuse University, founder and president of Bionostics, Incorporated; author or coauthor of nine patents and more than150 publications; member of NOHA’s Professional Advisory Board; and recipient of the 1991 Herbert J. Rinkel Award from the American Academy of Environmental Medicine "in recognition for excellence in teaching the techniques of environmental medicine."

The wheels of autism research seem to turn exceedingly slowly except occasionally when they spin while going nowhere. However, 1995 saw the beginnings of a new kind of effort that should produce some real travel down the road of understanding. In January of 1995, the Autism Research Institute, directed by NOHA Honorary Member Bernard Rimland PhD, convened the first Defeat Autism Now! (DAN!) conference in Dallas, Texas. Largely financed by parents of autistic children, this conference brought together about 30 of the leading investigators on autism—physicians and scientists—from the United States and Europe. Two sessions were held. In the first session, chaired by me, each participant presented a commentary on his methods and findings without interruption or criticism. In the second session, chaired by NOHA Honorary Member Sidney M. Baker, MD, of Weston, Connecticut, the methodologies were categorized and discussed from the standpoint of diagnostic usefulness. The goal of the DAN! conference was to provide raw material for the formulation of a diagnostic protocol for clinical assessment of children with autism and related disorders. In December of 1995, that goal was finally achieved with the submittal of a final draft protocol (about 40 pages long) by Drs. Baker and Pangborn to the Autism Research Institute (ARI). As of this writing (January 1996), ARI has the protocol at the printing stage. It can be purchased from ARI for $25.00: Autism Research Institute, 4182 Adams Avenue, San Diego, CA 92116.

Between January and December an awful lot of digging, phone calling, report reading, and writing occurred. Obviously, the information presented by the 30 experts led to contacts with other investigators who had important information to contribute. After all this was assimilated, the lead author, Dr. Sidney Baker, sent draft protocols to all 30 DAN! participants for review, and then their reviews had to be considered. The final result is, we hope, a consensus of diagnostic procedures that make sense and might possibly lead to effective therapies or, at the least, to an organic or biochemical understanding of the problems. Scheduled for the Chicago area, June 15-16, 1996, is a seminar for about 200 doctors, with nationwide representation, on how to use this protocol. Parents of children with various developmental delays are also welcome.

All of this would not lead to an organized understanding of the underlying problems of autism if there were no database into which the diagnostic results could be stuffed, sorted, and categorized and then portrayed in understandable form. The Autism Research Institute has realized this and has funded Dr. Sidney Baker to establish a data base facility to receive laboratory results and reports. The submittal and processing of the diagnostic test results will, of course, be voluntary and confidential. We certainly hope that all participants will enter the measured diagnostic results in the database because this will allow study of clusters of abnormalities and differentiation of "types" of autism.

At this stage, the protocol, with over 90 cited references, is considered to be a work in progress and not a final statement of diagnostic procedures for autism. No doubt, this effort and other efforts will uncover additional informative diagnostic procedures. They can be considered and added to future editions of the protocol. But for now, at least we've got a working protocol and we’re establishing procedures for its use.

What are some of the avenues of investigation in this protocol? Probably all are worthy of mention, but with limited space, a selected few will be mentioned here.

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. . . and Sidney M. Baker (among others) have found various immune dysfunctions in a high proportion of autistic children. Although the specific dysfunctions seem diffuse in character, some commonalities are notable such as abnormal T-cell profiles and much evidence of viral infection.

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For over a decade, Dr. Karl Reichelt, Director of Clinical Chemistry for the Department of Pediatric Research at the Rikshospitalet (National Hospital) in Oslo, Norway, has reported abnormal peptides in the urine of autistics. Peptides are pieces of proteins that are not completely broken down into the basic components—the individual amino acids. Dr. Reichelt has observed that these peptides, which are 4 or 5 or 6 amino acids long, have amino acid sequences that match those of some opiate-acting peptides. The dietary sources of these opiate peptides are postulated to be gliadin or gluten (from cereal grains) and casein (from milk). The analytical finding of Dr. Reichelt's peptides has been confirmed by Dr. Paul Shattock at the University of Sunderland in England and by Dr. Robert Cade at the University of Florida, Gainesville. Obviously, urinary peptide analysis is an important part of the autism protocol.

Drs. Hugh Fudenberg (Neuroimmuno Therapeutics Foundation, Spartansburg, South Carolina), Sudhir Gupta (Vice-Chairman, Department of Medicine, University of California, Irvine), and Sidney M. Baker (among others) have found various immune dysfunctions in a high proportion of autistic children. Although the specific dysfunctions seem diffuse in character, some commonalities are notable such as abnormal T-cell profiles and much evidence of viral infection. T-cells are a type of lymphocyte that participates in immune reactions. A rather complete immunology panel is included in the testing protocol. One factor being researched is whether over response or under response to childhood immunizations is an important factor. Another question is why notable success in improving the behavioral and functional abilities of autistics sometimes occurs using Dr. Gupta’s therapy with gamma globulin (a blood plasma protein that has immune activity) or Dr. Fudenberg’s therapy with transfer factor (used in treatment of disorders of immune response).

A third avenue of investigation is metabolic and nutritional. Unusual organic acids in the urine of autistic individuals have been found by Dr. William Shaw of Children's Mercy Hospital, Kansas City, Missouri. Zinc deficiency, found by blood, cell, or hair analysis, has long been reported by several investigators. Deficiencies or disorders in sulfur amino acid metabolism were measured and reported 10 years ago by me and remain a puzzling finding for a high proportion of autistics. Recently, Dr. Rosemary Waring of the School of Biochemistry, University of Birmingham, England, has reported abnormally high blood cysteine (a major sulfur-bearing amino acid) and reduced levels of inorganic sulfates in autistics. Sulfate conjugation (detoxication) of toxic chemicals appears to be impeded for some autistics. Blood platelet measurements of a sulfotransferase enzyme show lower than normal levels. Do some autistics have difficulty detoxifying via sulfate conjugation with toxics? And why do hair element analyses often show elevated antimony, aluminum, and other toxics for autistic individuals? These questions and more are addressed by testing that is described in the new protocol.

As the father of an autistic, 28-year-old son I, for one, am tired of waiting for the puzzles of autism to be solved in the conventional arena of medical research. To those who have studied this problem it appears multifactorial with many causative and secondary factors. Rigorous studies that have addressed a single factor with control group comparisons and with blinded or crossover protocols have resulted in little real progress in remedying autism. In fact, our basic understanding of autism does not extend very far beyond its functional and behavioral descriptions and some general categorizations such as serotonin, purine, phenylalanine (PKU), etc. disorders. This new effort, chartered by the parents and managed by the Autism Research Institute, is broad in scope and ambitious in purpose. Its findings can provide guidance to later, more rigorous studies for those seeking "iron-clad" proof of causations and mechanisms.

If you want to know more about this new, international effort to defeat autism now, call the Autism Research Institute and order a copy of "Clinical assessment options for children with autism and related problems." This work is written for parents and for health professionals at the "get started" level. The telephone number is: 619-281-7165.

Article from NOHA NEWS, Vol. XXI, No. 2, Spring 1996, pages 3-4.