What is DAN! (Defeat Autism Now!)?
THE HISTORY OF THE DEFEAT AUTISM NOW! (DAN!) PROJECT: HOW IT GOT STARTED, AND WHY IT GOT STARTED
by: Bernard Rimland, Ph.D.
Edward & Awit with the late Dr. Bernard Rimland
For too many years, autism research has largely been confined to descriptive efforts (What are the symptoms? What brain areas and functions are affected?) or to trying various drugs, developed for other purposes , which might bring about reduction of symptoms. Even with such limited goals, progress has been far from encouraging.
Drugs, in particular, quite apart from their harmful side effects, have absorbed far too much time and attention. Autism has never been caused by a deficiency of Ritalin or Risperdal. I heard the following words from two psychiatrists, both mothers of autistic sons, two years apart. One physician-mother was from the East Coast, the other from California: “It is one thing to be looking for a drug in the Physicians Desk Reference for another mother’s child. When it is your own child, the words take on a very different meaning.” I’m sure that is true!
Since its establishment in 1967, the Autism Research Institute has had, as a major priority, the tracking of promising treatments for autism. Intensive study of the scientific literature, and analysis of case reports from literally thousands of parents of autistic children, convinced us that there is much that can be done now to help many autistic children. Progress in the acceptance of useful medical interventions is painfully slow – it is not uncommon for a safe and effective treatment to be available for decades before it is widely implemented. A recent example is the use of small amounts of folic acid, a very safe B vitamin, as a means of preventing severe birth defects. It is estimated that over 25,000 cases of mental retardation could have been prevented in the U.S. if widespread use of folic acid supplements had been recommended when the discovery was first announced.
To accelerate the development and dissemination of information that will be helpful to many families of autistic children, the Autism Research Institute (ARI) convened the first Defeat Autism Now! (DAN!) conference in Dallas in January, 1995. The attendees were approximately 30 physicians and scientists, from the U.S. and Europe, with special expertise in autism research and treatment. Psychiatry, neurology, immunology, allergy, biochemistry, genetics and gastroenterology were among the fields represented.
The conference was a great success: there was a cordial meeting of the minds and a very rapid consensus among the participants, most of whom had never met each other previously, as to the most useful approaches of treatment.
The participants agreed that one of the major priorities of the DAN! Project should be the publication of a document representing the best ideas and practices of those in attendance, so that they could share their expertise with physicians everywhere who were interested in bringing about real improvement in the diagnosis and treatment of autism, as quickly as possible. The document, Medical Assessment Options for Children With Autism and Related Problems (or DAN! Clinical Manual), first published in February 1996, was updated in January 1997, April 1999, September 2001, September 2002, and September 2004. It represents a consensus statement of the state-of-the-art alernative medical approach to the treatment of autism.
Follow up DAN! Conferences were held annually for five years, going to bi-annual in 2001, to further advance the treatment of autism. The conferences have produced a base of physicians who wish to employ rational, scientifically sound approaches to the diagnosis and treatment of autism, and who regard psychoactive drugs as their last choice, not their first.
The Clinical Options Manual represents the best thinking of some of the very best minds in the field of autism. The arduous work of putting together the ideas expressed at the Dallas DAN! Conference, and later in innumerable letters, faxes, e-mail messages and telephone conversations among the participants, was undertaken by two exceptionally talented individuals:
Sidney M. Baker, M.D., a graduate of and former faculty member of the Yale Medical School and former director of the Gesell Institute of Human Development, has extensive training and experience in pediatrics, allergy, immunology, neurology, biochemistry and compute science.
Jon Pangborn, Ph.D., a fellow of the American Institute of Chemists and Certified Clinical Nutritionist, is the father of an autistic son. Now a private consultant, Dr. Pangborn was formerly president of Doctors Data, a major medical laboratory, and very probably has studied more biochemical workups of autistic patients than anyone else on earth.
It is now very evident that there has been an enormous prevalence of autism during the past decade. One of the consequences of this huge upsurge in autism has been a great number of autistic children born into families in which one or both parents are physicians. A good many of these physician-parents, after having explored conventional medicine’s approaches toward dealing with autistic children, and finding them ineffective, have joined the ranks of DAN! doctors. At the Autism Society of America’s annual conference in San Diego in July, 2001, and again at ASA’s conference in Indianapolis in July, 2002, the Autism Research Institute has sponsored panel presentations titled “Physicians who have successfully treated their own autistic children.” Videotapes of each of these 2.5 hour long physician-parent panels are available from the Autism Research Institute. Jaquelyn McCandless, M.D., a board certified psychiatrist and neurologist, was about to retire when her 13th grandchild, Chelsey, was diagnosed autistic. Dr. McCandless accepted the challenge. After diligent research, she adopted the DAN! approach. Her story is told in her excellent, very helpful book, Children With Starving Brains, also available from ARI.
Having given you a somewhat formal presentation on how the Defeat Autism Now! Movement got started, let me go back a bit further in history and provide a more personal account of the experience which led to the establishment of the DAN! Project:
It all started with the birth of my own autistic son, in March of 1956. Mark was a screaming, implacable infant who resisted being cuddled and struggled against being picked up. He also struggled against being put down. Our pediatrician, Dr. Black, who had been in practice for 35 years, had never seen nor heard of a child like Mark. Neither Dr. Black nor I, who at that time was three years beyond my Ph.D. in psychology, had ever seen or heard the word “autism.” It was not until Mark was two years old that my wife, Gloria, remembered reading, in one of her old college textbooks, about children like Mark, who looked through people rather than at them, and who accurately repeated radio commercials and nursery rhymes, but did not engage in communicative speech. I went out to the garage, found the dusty box of old college texts, and there, five years after I had earned a Ph.D. as a research psychologist, I saw the word “autism” for the first time.
Autism was extremely rare in those days, probably occurring perhaps once or twice in every 10,000 live births. Slowly but surely, the prevalence was rising. In my summary of research on the prevalence of autism, published in an article I wrote for the Autism Research Review International in 1989, I reported that a number of studies showed autism to occur on average in 4.5 children per 10,000 live births. More recently, in 2003, the American Academy of Pediatrics and the Centers for Disease and Control and Prevention reported that autism now occurs in 60 children out of 10,000 live births – an increase of 1500% in a decade!
Starting with the several references cited in my wife’s old text, I began to read everything I could find on the subject of autism. I was appalled to find that it was uniformly believed, and presented as an established fact in every textbook, that autism was an emotional (psychological) disorder, and the only treatment recommendations were psychoanalysis or other forms of psychotherapy for both the mother and the child. The mother was required to acknowledge her guilt, and disclose why she hated the child and wished it had never been born. The child, in so-called “play therapy,” was provided with a paper or clay image of a woman (his mother) and was encouraged to tear it to bits, thus expressing his hostility toward his mother, whom the psychotherapists were positive had caused his autism. There were a few drugs that were also used with autistic children, but then, as now, the idea was not to treat the autism but to slow the children down enough to make life tolerable for those who must deal with them.
I decided to read everything I could possibly find on the subject of autism, not only to learn what might be done to help Mark, but also to try to understand on what basis the psychiatrists had decided that mothers were to blame for their children’s autism. After four years I had in fact read everything I could possibly find on the subject of autism, including translations of the foreign language articles I could not read myself. I learned that, despite the supreme confidence (arrogance) with which the authorities proclaimed the mothers were to blame, I could find no shred of evidence for such belief. The book I wrote, Infantile Autism: The Syndrome and its Implications for a Neural Theory of Behavior, won the Century Award in 1964, and resulted, as I had intended, in destroying the belief in he “psychogenic hypothesis” that autism was an emotional disorder caused by bad mothering. Instead, I successfully argued, the biological causes of autism must be sought.
The resulting publicity – I had overnight become the world authority on autism – resulted in my receiving many letters and phone calls from other parents, as well as from a number of research scientists interested in exploring the ideas presented in Infantile Autism.
One of the first letters I received was from a mother in Canada who was experimenting with high doses of certain vitamins in the treatment of her autistic child. It seemed to me like rather a crazy idea, but she was reporting good results. The Canadian mother sent me a letter that she had received from her own mother, the child’s grandmother, who was a nurse in a psychiatric hospital in Saskatoon. The grandmother’s letter observed that two young psychiatrists, Drs. Abram Hoffer and Humphry Osmond (who later became my friends and colleagues) were experimenting with large doses of vitamin B3 on their adult schizophrenic patients. The grandmother wrote that she and the other psychiatric nurses and staff members could see quite remarkable improvement in the patients that Hoffer and Osmond were treating with “megavitamin” B3. The improvement was clearly better than that seen in the patients being treated by the other psychiatrists, who used only drugs. Nevertheless, to the surprise and disappointment of the nursing staff, the traditional psychiatrists refused to see what was so clearly evident to everyone else, that Hoffer and Osmond’s megavitamin treatments were in fact effective. Since I was so keenly aware that the psychiatrist establishment had shown a total lack of integrity by blaming the mother for causing autism on the basis of no data, it did not surprise me that the psychiatric establishment could also be deluding itself with regard to the efficacy of treatments. Hoffer and Osmond had published a number of controlled double and triple blind studies supporting their initial findings. It made no difference to the psychiatric establishment, which was – and still is – hooked on drugs. (“Don’t bother me with the facts – my mind is made up.”)
In 1965, having been favorably impressed by the excellent results achieved by Ivar Lovaas at UCLA in teaching autistic children with behavior modification techniques (now called ABA), I founded the Autism Society of America (ASA) to provide a nationwide forum for informing parents about new and important developments. Two years later, in 1967, I founded the Autism Research Institute as a center for collecting, analyzing and disseminating research on the cause and treatment of autism.
Over a period of several years I began to hear from other mothers, in California, New York, Georgia and elsewhere that they were trying high doses of vitamins on their autistic children, and that certain vitamins seemed to be helping. There was sufficient consistency in these reports that I decided to conduct a large-scale study of the vitamins, and in the late 1960s undertook and completed such a study, based on several hundred autistic children. The results were quite positive, especially for Vitamin B6. At the time of this writing I am aware of 22 studies of vitamin B6 as used in autistic children, conducted by researchers in seven countries, and all studies but one (of only nine children) have provided positive results. Adding magnesium to the B6 has repeatedly been found to be essential for best results. Thirteen of the studies have been double-blind, placebo-conrolled studies. Nevertheless, a great many articles and textbooks still continue to say that vitamin therapy for autism has not been proven, or that it is unsafe. Both contentions are definitely untrue. (To answer several frequently asked questions, our studies, as well as the studies of Dr. Gilbert LeLord and his group in France, have shown that almost 50% of autistic children and adults will improve when given B6 and magnesium, and that on average, the optimal dosage is 8mg of B6 and 4mg of magnesium per pound of body weight per day.) The B6 and magnesium combination has been found to be extremely safe, and, as I noted, is effective on almost half of all the children and adults on whom it has been tried.
As the years went on, I began finding more and more that the parents, especially the mothers, of autistic children were extremely effective at identifying treatments that were helpful to their autistic children. They were also very observant in detecting factors that caused their children to become worse. In 1967 we began systematically to collect such data from parents of autistic children and to include on our questionnaires items about the effects of vaccines on the children. (Many parents had reported their children to get markedly worse after the DPT shot.) Having learned that infants poisoned with mercury-containing teething lotions and diaper powders showed many of the symptoms of autism, I began collecting, in my 1967 questionnaire, information on the mother’s exposure to dental amalgams while pregnant with the autistic child. I did not know then that vaccines contained significant amounts of the mercury-containing preservative thimerosal. We also began collecting information about the effects of milk and wheat on children’s behavior, since many parents were telling us that their children did much better on a milk-free and/or wheat-free diet.
It was very evident that there were a number of treatments, largely discovered by the parents of autistic children, that there were much more effective than the drugs used by the psychiatric establishment, and certainly much safer.
In 1994, after a series of discussions with my esteemed colleagues Sidney Baker, M.D., and Jon Pangborn, Ph.D., we decided to call together a think-tank of exceptionally competent and open-minded physicians and scientists who were interested in the ideas that we shared, and could help us make sense of them. The approach favored by the invitees was to identify treatments – safe treatments – for which there is credible evidence of efficacy. Once these efficacious treatments are identified, an attempt is made to find why they work, so their efficacy can be improved.
And that is how the DAN! Project got started.
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Afterword: Oh yes! You are wondering about my son Mark, who we were told to institutionalize and forget, at age 5, who was in diapers at 7 and did not ask or answer a question until age 8. Mark, now 49, lives at home with his parents, attends a day program for mentally disabled adults, takes the city bus to school, makes daily visits to the art galleries and coffee shops in the neighborhood, and has turned out to be a remarkably talented artist, discovered at age 22. Mark has been interviewed about his art on NBC, CBS, CNN and PBS. His works have been featured in a number of one-artist shows and are in the permanent collections at several galleries. He did the illustrations for his sister Helen Landalf’s children’s book, The Secret Night World of Cats. We are proud of him. Not such a bad outcome, after all!