...Two roads diverged in a wood, and I—I took the one less traveled by, and that has made all the difference.   – Robert Frost (1874-1963)

Autism is an increasingly common, ruinous developmental disorder that most often appears in early childhood, usually following a sudden or slow-but-steady regression or loss of skills, along with the ability to learn, communicate and adapt to life's circumstances.  The condition is frequently accompanied by devastating systemic disease:  these normal-, even healthy-looking children nevertheless suffer cruelly from physical pain and disablement, sensory disorders and emotional trauma.  Their futures almost certainly hold no more than onerous dependency without swift and sure intervention, preferably while the children are still very young.  Even so, autism's parameters are often acknowledged no further than their neurological dimensions, together with autism's outward characteristics or symptoms.  Coupled with this is an admission that the cause of the epidemic disability is unknown—for the cause or causes of autism have been sought primarily in the area of genetics from the 1940s, when the condition first began to appear in notable numbers, and was described by Kanner.

Scientific Background
Only recently has it been recognized by scientists that the immune system is complexly interwoven with, and profoundly affects, all other body systems.  Increasingly, also, it is acknowledged that early or severe derailments of the immune system, particularly at the earliest stages of life, can result in profound neurological damage.  Such derailments are known to occur in the genetically vulnerable in conjunction with severe environmental insults, such as pre- or post-natal microbial infections, toxic exposure, or vaccination.  But vulnerable or not, the numbers of persons, particularly children, afflicted with an ever-growing array of immune-mediated diseases are skyrocketing.  Because of this, neuroimmunology is a critically important, though still vastly understudied, scientific area—especially with regard to conditions like autism, long assumed to be purely genetic in nature.  In the case of autoimmune phenomena, basic immune, neurochemical, and genetic factors interact with environmental influences such as pathogens and toxins to produce a volatile condition in which the body continuously reacts against, and damages, its own tissues.  This mobile conflict can take place in a wide variety of settings, notably the brain and the gut, the scenes of dramatic functional disturbances in autism.

Mission and Motivation
Though recent scientific findings continue to demonstrate multiple immune, immunogenetic, and detoxification abnormalities in a high percentage of persons with autism, immune-related autism research remains almost completely unfunded by federal and private research entities, and its implications unacknowledged.  Because of this, and even more because of the burgeoning autism epidemic, a group of parents and professionals came together in 1998 to form the Autism Autoimmunity Project.  This parent-led, nonprofit charity, operated by volunteer effort, is dedicated to obtaining funding for first-class, verifiably independent research centered on the immune and immunogenetic abnormalities so often found among persons and families with autism.  The Project aims to fund studies resulting in the precise definition of the immune-related anomalies in autism, and leading to the evolution of elegant treatments and timely preventive measures—as soon as possible containing, then curtailing the exploding incidence of autism.  Emphasis is placed on delivering the inspirations and answers that are desperately needed now by the autism community, in preference to research requiring ten or twenty years to yield (perhaps) meaningful results, or shorter-term studies which yield general understanding, intriguing observations, or additional status-quo symptomatic treatments, but no tools to contain and end the autism epidemic, or restore the health of those who already have been affected.

Research Trends
In probing these anomalies, Project-backed research centers on the roles of immunogenetic predispositions, microbial pathogens and toxins in precipitating a state of autoimmunity (continuous immune reaction against the body’s own tissues) or immune deficiency (lack of ability to clear pathogens completely from the body), with subsequent failure or disruption of vital endocrine, metabolic, digestive and nervous system processes.  The Project’s premise derives from the groundbreaking research of Scientific Board member Dr. Vijendra K. Singh in cooperation with the late, great Reed Warren, as well as other pioneers in neuroimmunology.  In these collaborations neurodevelopmentally disordered persons revealed a faulty gene, responsible for depriving the individuals of a key protein needed for eliminating viral and bacterial pathogens, natural and vaccinal, from the body—leaving these persons vulnerable to the neurological ravages of chronic, subclinical infection.  Adding autoimmune damage to the scenario, antibodies against brain and nervous system tissues were also found in such individuals, and these corrosive agents proved, via the distinguished Dr. Singh’s studies, to be related to herpesvirus 6 and a measles-mumps-rubella combined vaccinal antibody.  There may be a number of other autoantigens as well; more research, and necessarily funding, is needed to discover this, to evaluate a variety of possible immuno-therapies, and evolve preventive testing and routines.  Project-supported researcher Andrew Wakefield, M.D., F.R.C.S. and his multi-national research team, paralleled by colleagues from Georgetown University, Washington, D.C., are in the process of defining a new, vaccinal measles-related inflammatory bowel disease in children with autism, ADD/ADHD, and food allergies.  Its complete elucidation remains to be accomplished, again pending funding; also the evolution of noninvasive diagnostic procedures for the bowel condition, and preferred treatment modalities.

Project Board member Teresa C. Binstock (http://www.jorsm.com/~binstock) makes her contribution to the body of knowledge through exhaustive study of the laboratory findings on many children with autism, and analysis of these findings across reams of medical literature.  Detecting the possible underlying causes of the laboratory anomalies and the broader patterns revealing subsets within the autistic population is Binstock’s special forte and, working beside their physicians, she has succeeded in catapulting many children toward substantial recovery, and assisting big-name scientists on their own paths toward significant new discoveries.  Binstock’s two most recent scientific publications, exploring the presence of multiple chronic infections and toxic mercury in children with autism, are featured on page 1 of the June 2001 Autism Autoimmunity Project Newsletter (AAPN) and at http://www.harcourt-international.com/journals/mehy/previous.cfm?art=mehy.2000.1247 and ....1281; a third, "The Anterior Insular Cortex: Linking Intestinal Pathology and Brain Function in Autism-spectrum Subgroups," is in press as of September 2001. An additional, exciting case-study publication is in the final stages of completion.  Scientific Board member Harold Buttram, M.D., fellow of the American Academy of Environmental Medicine, has prepared more general study protocols, one of them examining the health of vaccinated and unvaccinated populations—an important comparison that has never before been made—to help determine best practice in pediatric healthcare (this project is as yet unfunded).  His concern extending to the numerous toxic hazards in our environment, Dr. Buttram also seeks to educate the public in preventive measures and complementary therapeutic options.

Immunologist James Oleske, portrayed in the 1989 CBS television movie, "The Littlest Victims," was the first scientist to apprehend and describe pediatric AIDS.  This Project-supported researcher has been partially funded by the State of New Jersey, through the efforts of president Ray Gallup, but further funding is needed to perform, as planned, exhaustive studies of the autistic immune system, including sophisticated PCR testing of blood and tissues.  Project member-at-large F. Edward Yazbak, M.D., F.A.A.P. has completed a series of eye-opening studies on autism incidence across the United States, as well as the incidence of autism among the children of maternal vaccinees.  An invited presenter to numerous conferences, Dr. Yazbak will formally publish his findings in the near future.

Unique Approach
Potential supporters of autism biomedical research will find, in evaluating the Project, several nearly unique traits, in comparing that organization with other research-oriented groups.  There are no full or even part-time personnel; all work other jobs, including that of full-time special-needs parent, and many serve other organizations as well.  Project personnel have, for most of the organization's existence, received no salaries or other compensation for expenses incurred in the course of Project activities, and no offices are maintained, so that all monies can be put toward scientific research.  Members use their own homes and equipment, personal contacts and initiative to accomplish Project goals.  Inquirers will not find frequent, large, sophisticated, or expensive publications or other “advertisements;” nor will they find Project personnel heavily lobbying federal or state entities—though Project individuals regularly interact with legislators and other officials pertaining to important autism, as well as broader health, issues.  As the numbers of children diagnosed with autism spiral out of control, unaffected by the activities and accomplishments of several large, multimillion-dollar autism research organizations, the Project relentlessly challenges existing assumptions and models regarding the nature and causation of autism.  This extends even to the highly controversial vaccine issue:  if the autism—and indeed the overall childhood disease—epidemic are to be understood and dealt with, the role of vaccines in health and disease must be thoroughly explored.  Where vaccines play a causal or contributory role in the disease of vulnerable populations, alternative vaccines should be developed, and adjustments made in immunization routines so that all children may enjoy the advantages of medical care without harm to their health and intelligence.

The highest-quality independent science is pursued by the Project in a spirit of courageous, open-minded inquiry, without regard for economic gain or political correctness.  The Project does not seek, not will it accept, monies from pharmaceutical companies or other industries whose interests dominate the direction and dissemination of research projects and findings; this sense of caution extends even to the prospect of grant proposals to federal and state agencies, due to extensive industry, as well as political, influences within key governmental divisions.   This is necessary not only for the Project to back researchers outside the long-entrenched, industry/government inner circle, but also to enable it to pursue new and innovative research paradigms.  Fund-raising is thus far more challenging for the Project than for other research organizations, but the Project's complete independence holds great potential in terms of tangible and timely accomplishment in the field of autism biomedical research.

The "Project" portion of the organization's title is significant, chosen in preference to designations like "foundation" or "alliance" or "institute:"  for members literally hope to 'go out of business' someday—complete their project—rather than perpetuate their collaborative roles and status as autism researchers and research supporters.  At the point that the impetus for autism’s epidemic is largely understood, and restorative treatments and sound preventive measures are delineated, with the future of neuro-immune developmental research in sight, Project personnel expect to count their mission fulfilled.  Though autism is an enduring interest for all Project members and supported researchers, their careers lie outside of the Project, in their university posts, medical practices, and numerous other walks of life, as well as, for many, their families.  The Project’s unique operation, motivations and aims free its members from one of the most striking hidden agendas of the largest autism research organizations:  the maintenance of the livelihoods and status of numerous organizational personnel and researchers, as well as facilities and support personnel, through the needless prolonging of research well into the future.

Personnel
The Project is comprised of, currently, four officers, six Board members, and four Scientific Board members:  a small cast of characters, with no superfluous names, either for affect or to encumber organizational processes.  On the Scientific Board two members, Vijendra Singh, Ph.D. and Harold Buttram, M.D. are active autism researchers; two—Brent Cohen, Ph.D. and Ronald Hoffman, M.D.—act in an advisory capacity.  The diversity of its personnel allow the Project to transcend the built-in prejudices, self interests and jealousies of the typical, tight, peer-controlled scientific groups charged with apportioning research funds in government and larger private organizational arenas:  expertise among the highly educated and accomplished officers, Board members and chapter leaders ranges from medical research to motherhood, embracing also such disciplines as criminal investigation, library science and historical scholarship, physical therapies, aviation, business and law.  Project participants are self-motivated, high-achievers determined to make a difference in the lives of families with autism, as soon as possible, and in a great variety of ways.  Board member Holly Bortfeld, for instance, is president of the much-honored Autism Recovery Network and organizer of two major autism biomedical conferences in Orlando, Florida in 1999 and 2000.  The many Project members-at-large include an infectious disease specialist and Fellow of the American Academy of Pediatrics, a registered dietician and Master of Public Health, as well as the Autism Foundation of New York.  A Project Honorary Board member, the U.S. House of Representatives' Dan Burton, Chairman of the powerful Government Reform Committee, is among the most effective and outspoken autism advocates in the world.  Former Air Force Major and Honorary Board member Sonnie Bates, father of a child with regressive autism, gave up a flourishing military career in protest against the forced administration of the anthrax vaccine, and today is among the foremost advocates of the use of informed consent provisions, a concept dear to the hearts of a large part of the autism community.  Madeleine Goldfarb, mother and autism crusader, is the Project's liaison to the New Jersey Governor's Council on Autism.  The Project has eight state-incorporated chapters to date, in addition to the headquarters in New Jersey, based in Delaware, Florida, Michigan, New York, Ohio, Oregon, Pennsylvania, and Texas, established to promote funding events and activities across the United States.  The recently-formed chapter for Michigan, named “Eyes on Autism,” is headed by Debbie Darnley-Fisch, M.D.
 

Selected studies by Scientific Board member Vijendra K. Singh, Ph.D., as well as member-at-large F. Edward Yazbak, M.D., F.A.A.P. are accessible from the Autism Autoimmunity Project web site at http://www.gti.net/truegrit, along with feature articles by Scientific Board members Dr. Harold Buttram, Dr. Ronald Hoffman and Dr. Singh, plus Dr. Yazbak and Board member Teresa C. Binstock, researcher in developmental and behavioral neuroanatomy.  Excerpts from the references below can be found at http://lib.tcu.edu/www/staff/lruede/immresearch.html, a sub-page of the Project site.
 

Selected References
Cohen and Volkmar, Handbook of Autism and the Pervasive Developmental Disorders (New York:  J. Wiley, 1997), chapter 18, "Medical Conditions:  Infections…Immunological Association," page 398.

Isabelle Rapin, Introduction and Overview to Bauman and Kemper, The Neurobiology of Autism  (Baltimore, MD:  Johns Hopkins Press, 1994), pages 13-14.

Uta Frith, Autism:  Explaining the Enigma (Cambridge, Massachusetts: Basil Blackwell, 1989/1994), p. 79.

Marian Sigman and Lisa Capps, Children With Autism: a Developmental Perspective (Harvard University Press), 1997, Chapter 8, <In Search of Core Deficits and Causes:> "What Are the Causes of Autism?," pp. 173-4.

C. Gillberg and M. Coleman, The Biology of the Autistic Syndromes, 2nd edition, 1992.  Chapter 8, "Genetic Factors," pages 96 and 103;  Chapter 18, "Infectious Diseases"[:] Postnatal infections[:] …Can an infection after birth cause an autistic syndrome?," pages 222-4.

Schopler and Mesibov, eds., Diagnosis and Assessment in Autism (1988), pp. 28, 86, and 295-6.

M.V. Pletnikov, T. H. Moran, and K. M. Carbone, "Borna Disease Virus Infection of the Neonatal Rat: Developmental Brain Injury Model of Autism Spectrum Disorders," Frontiers in Bioscience, March 1, 2002, vol. 7, pages D593-607.

Hornig, Lipkin, et al., "An Infection-based Model of Neurodevelopmental Damage," Proceedings of the National Academy of Sciences, vol. 96, no. 21, pp. 12102-12107, Oct. 12, 1999 (http://www.pubmedcentral.nih.gov/articlerender.fcgi?tool=pubmed&pubmedid=10518583).

Hornig, Lipkin, et al., "Infectious and Immune Factors in the Pathogenesis of Neurodevelopmental Disorders: Epidemiology, Hypotheses, and Animal Models," Mental Retardation and Developmental Disabilities Research Reviews, vol. 7, no. 3, 2001, pp. 200-210 (http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=11553936&dopt=Abstract).

Trottier, et al., "Etiology of Infantile Autism:  A Review of Recent Advances in Genetic and Neurobiological Research" (Journal of Psychiatry and Neuroscience, vol. 24, no. 2, March 1999, p. 103-115).

Van Gent, et al., "Autism and the Immune System" (Journal of Child Psychology and Psychiatry, vol. 38, no. 3, March 1997, pp. 337-349).

P. Szatmari, et al., "Genetics of Autism:  Overview and New Directions" (Journal of Autism and Developmental Disorders, vol. 28, no. 5, 1998, pp. 355-365).

Comi, "Familial Clustering of Autoimmune Disorders and Evaluation of Medical Risks in Autism" (Journal of Child Neurology, June 1999, vol. 14, no. 6, pp. 388-94).

"Autoimmune Diseases:  Genes, Bugs and Failed Regulation," Nature Immunology, vol. 2, no. 9, 2001, September 2001, pp. 759-761 (http://www.nature.com/ni/special_focus/autoimmunity/home_welcome.html).

"Association of MHC Genes With Autism," Frontiers in Bioscience, August 1, 2001, vol. 6, d936-943, http://www.bioscience.org/2001/v6/d/torres/2.htm.

Warren, V. K. Singh, et al. "Immunogenetic Studies in Autism and Related Disorders" (Molecular Chemistry and Neuropathology, vol. 28, numbers 1-3, May-August 1996, pp. 77-81).

V. K. Singh, “Neuro-immunopathogenesis in Autism,” Chapter 5, Clinical Neuroimmune Biology (vol. VI, New Foundation of Biology series, Elsevier Science, 2001).

V. K. Singh, "Association of Anti-MBP and Anti-NAFP Antibodies With HHV-6 Antibodies in a Child With Autistic Regression." Journal of Allergy and Clinical Immunology, vol. 101, no. 1, part 2, S122, January 1998.

V. K. Singh, "Serological Association of Measles Virus and Human Herpesvirus-6 With Brain Autoantibodies in Autism" (Clinical Immunology and Immunopathology, vol. 89, number 1, October 1998, pp. 105-8).

Uhlmann, et al., “Measles Virus (MV) in Reactive Lympho-nodular Hyperplasia and Ilio-colitis of Children” (180th Meeting of the Pathological Society of Great Britain and Ireland, January 18-21, 2000).

“Detection and Sequencing of Measles Virus from Peripheral [Blood] Mononuclear Cells from Patients with Inflammatory Bowel Disease and Autism” (Digestive Diseases and Sciences, vol. 45, no. 4, April 2000, pages 723-9).

Jyonouchi, “Innate and Adaptive Immune Responses in Children With Regression Autism:  Evaluation of the Effects of Environmental Factors Including Vaccination” (Journal of Allergy and Clinical Immunology, February 2001, Part 2, vol. 107, no. 2).

Jyonouchi, et al., “Proinflammatory and Regulatory Cytokine Production Associated With Innate and Adaptive Immune Responses in Children With Autism Spectrum Disorders and Developmental Regression” (Journal of Neuroimmunology, vol. 120, nos. 1-2, January 11, 2001, pp. 170-9).

“Disordered Metal Metabolism in a Large Autism Population,” William J. Walsh, Ph.D. and Anjum Usman, M.D., 154th Annual Meeting, American Psychiatric Association, New Orleans, May 5-10, 2001 (abstract available at http://www.hriptc.org/APA_abstract.htm).
 

From AAPN, The Autism Autoimmunity Project Newsletter, vol. 3, number 1, June 2001

Back to the Autism Autoimmunity Project homepage