Emily Dorrance Program on Children's Neurometabolic Disorders: Dedication

Written by Lewis E. Mehl-Madrona, MD, PhD
Concerning autistic children with neuro-metabolic disorders: like most physicians, I was trained that autism was either genetic, psychological, or both...

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Although a few autistic children had always been a part of my practice, five years ago I would not have suspected the prominent role that these and other children with neuro-metabolic illnesses would play in my practice. Like most physicians, I was trained that autism was either genetic, psychological, or both. In either case, the prognosis was dismal, and these children were not easily nor enjoyably treated. We physicians were taught to be suspicious of the parents of autistic children, as either demanding too much or actually causing the problem. Bruno Bettleheim was reponsible for some of this focus on parents causing autism, though, fortunately, he has other good deeds to his credit.

I became interested in treating autistic children through my work with a remarkable young woman who had cancer, Emily Dorrance. I met Emily in January, 1998, while she was undergoing chemotherapy for a metastatic adrenal cancer. Emily had just started graduate school in Education at Harvard University, and was planning a career in working with disadvantaged and disenfranchised children. She had spent a summer in Pittsburgh working with poor children in the "Hill District," one of the poorer sections of the City. She cared intensively about children, especially the disadvantaged, wanting to improve their opportunities.

Emily and I spent many hours together during the course of her cancer. We talked about what she would do when she got well. I would joke with her about how she and I would stay in contact once she was well and didn't need me as a doctor anymore. Emily decided we would work together with autistic and brain injured children. She would focus on the behavioral and the educational component, and I would learn all about the medical side of these problems. I promised Emily that we would do that, and began to read about autism. I was fascinated to learn that autism was more amenable to treatment than I had ever thought possible. I learned about the many beneficial medical therapies for autism: gluten/casein free diets, the recognition and treatment of food allergies and chemical sensitivities, fatty acid therapy, amino acids supplementation, the neuropeptide secretin, hyperbaric oxygen, and intravenous immunoglobulin therapy, to name a few. Autistic children were improving, though multiple therapies were often used and needed, and no one could predict which child would be helped by which treatment.

Emily enjoyed hearing about my discoveries, during the times we chatted before and after visualization sessions, or during acupuncture, or body work. She suffered greatly from her chemotherapy, which eventually contributed to her demise from kidney failure.

Emily lived longer than anyone with her cancer was supposed to live, in better spirits, and with much less pain medication than is commonly used. She was very interested in Native American culture and healing. During a period of relative health, we took her to South Dakota, to meet Sonny Richards, a Lakota medicine man. Sonny and his family took to Emily immediately, and later that weekend, Sonny and his singers took Emily and her father to Bear Butte, where Sonny led a sweat lodge ceremony to find out from his spirit helpers how to help Emily. When a yuwipi ceremony was indicated, we brought Sonny and his singers to Pittsburgh, since Emily had become too ill to travel to South Dakota.

In the yuwipi ceremony the medicine man is tied up like Houdini: wrapped in a star quilt, and laid down upon a rug in the middle of the ceremonial room. The word literally means "they tie him up." The ceremony was originally imparted to Horn Chips in the 1860's, when he went to the top of Bear Butte to have a vision of how to treat "white people's diseases," of which smallpox was the most notorious. The ceremony is done in absolute darkness with the participants sitting in a ring around the wrapped-up medicine man who is surrounded by prayer ties and flags, rattles and gourds, and his other sacred objects.

The ceremony was performed in Pittsburgh in Emily's parents' master bedroom, probably one of the few yuwipi's ever performed in the Shadyside community. Emily lived a comfortable ecumenicism -- her and her parents' Chistianity easily blended with Native American spirituality, giving us a comfort in God that we all needed to cope with her struggles. During that yuwipi, I pledged to sun dance for Emily, which I did the following June, joking with Emily that, dead or alive, she had better be at that dance.

Sun Dance is the pinnacle of the Lakota ceremonial year, occuring around summer solstice, and providing an opportunity for the healthy members of the community to sacrifice and symbolically suffer so that the ill members of the community would not have to. For four days, we dance around the "Tree of Life," a recently cut tree, shorn of its branches, and planted at the center of an arbor. Men hang from the tree by pegs to take on the suffering of the weak.

sadly for all, Emily visited sun dance in spirit form. She died in October, 1998, teaching me that sometimes oncologists do treat beyond the limits that one human body can endure. As the pegs that were placed in the skin of my chest tore away during the piercing ritual of the sun dance, I heard Emily whispering to me that she didn't need this sacrifice from me anymore. "Do it for my mother and father," she said. "Do it for the children that I wanted to treat, do it for the other cancer patients in your practice." Emily wanted me to know that she was fine -- happy and fulfilled, engaged in the great adventure that comes after this earthly plane. Her sadness was only for the pain of those she left behind.

Inspired by Emily Dorrance, I began my work with autistic children, constructing a web site, challenging our hospital's pharmacy and therapeutics committee to allow intravenous secretin therapy, and searching for any treatment that would work. I have tried to convey the ending message of my book, Coyote Medicine, to never give up. Keep trying. Keep searching. There is always hope.

Now, again under Emily's continued inspiration, we have expanded the autism site. We are developing educational programs for use on the web by families with autistic children, who do not otherwise have access to alternative and innovative therapies. Some of these families barely have access to education. Few existing programs address the many needs of autistic children. Few parents are sufficiently educated and endowed to fight for the rights of their children to therapy and education. Some of our parents spend over $50,000 per year on programs and treatments. We hope to provide resources to all parents to aid in helping their children. Besides our information based pages on the many alternative treatments available, we plan to offer parents guidance on what constitutes proper diagnosis, on their child's rights for education and treatment, and plan to provide other easy to understand educational offerings. We will be working together with the University of Arizona to make our site available on reservation settings where computers are only beginning to appear. We will be developing the capability for parents to have personal web pages to enter data about their child and to get feedback about whether the treatments that are being used are working or not.

Besides Emily's guidance, other important people have been instrumental in making this project come alive, including Fia Richmond; Dr. Paul Skinner of the University of Arizona College of Medicine; Dr. Jayshiro Tashiro of the Center for Educational Technology of Northern Arizona University; Peter Shefler, our webmaster; Daria Woodside, our content editor; Sharon Gretz-Lasky, our Web Forum Coordinator; and a variety of consultants, including Dr. John Dye and Dr. Heidi Feldman. We have had generous help from NetHealthSystems, Inc., of Pittsburgh in our technical development. The Kings Point Richmond Foundation and Roy and Susan Dorrance have provided us with important resources to meet these goals.

But despite all this, what is it that excites me about treating these autistic children?

It is the demonstration of synergy!

Modern biomedicine has ignored synergy throughout the history of formal research. Synergy means that two treatments together are more than twice as helpful than either one alone. As I continue to treat autistic children, I am especially impressed with synergy. Children may respond minimally to one treatment. When we add a second treatment, their response more than doubles. Yet, neither treatment by itself is especially useful. I have seen this with intravenous secretin, a popular neuropeptide therapy, in which secretin is injected monthly to flood these children's brains with available hormone. Receptors exist in the speech areas of the brain, and children are reported to dramatically improve their language use after treatment with secretin. Victoria Beck has made secretin almost a household word through her treatment of her child, and the glowing reports of his success. She has been featured on Dateline and speaks at many conferences.

In this example, secretin seems to be most beneficial if the child is already being maximally challenged to learn. Some parents bringing their children for secretin therapy are doing maximal educational and behavioral efforts; others are doing nothing extra. The children with little extra seem to find less benefit from secretin. The maximally engaged and stimulated children seem to find sometimes dramatic but almost always significant benefit. I suspect that secretin facilitates a capacity for learning that then must be used. Important for researchers to understand, however, is that the usual format for a randomized, double-blind drug trial of secretin, could show no effects. If secretin potentiates learning, then only children who are being given opportunities to learn will benefit. A drug trial that ignores this will show no effect. This is especially serious, since most drug trials are done on poor patients, who are the very ones who do not receive the added benefits of maximal behavioral and educational therapies.

I am hoping that someday we can change the face of research in America. For too many years, we have used overly restrictive paradigms, treating people and healing as unimportant. Our most believed protocols are based on the idea that we can randomize treatment and that treatment can be double-blind, meaning that the patient and the doctor do not know who is getting treatment and who is getting placebo. Obviously, this paradigm only works for drugs, and, I suspect, poorly there.

As I read the literature on quantum physics, and especially the work of the physicist-philosopher, David Bohm, I wonder if there is such a thing as "blind." Perhaps we do know, in the way of paired energy particles, what happens to the other, making our instaneous shifts to compensate and preserve symmetry, on the macroscopic level even as quantum particles do on that level.

Nevertheless, the hope of this web site is to benefit children who have been relegated to the ranks of the hopeless for too many years. Due to the persistent efforts of their parents and friends, these children do have hope. This web site aims to describe the means by which hope and results may be achieved. And, in the spirit of Emily, we will keep looking for the best possible therapies, persistently never giving up. No matter what. That was Emily, and this is the focus of our site. To leave no stone unturned. To discuss all treatments being used by parents, maintaining an academic focus that neither shames or uncritically accepts what people are trying. Through a balanced approach, truth will eventually emerge, even if it is the truth that some of our therapies only work because we believe that they will and convince others to believe in them too. And some will eventually be shown to have genuine biological efficacy. Though I am convinced that faith in a treatment always augments its effectiveness.

And, in the spirit of Emily Dorrance, we invite all users of our site to offer suggestions on how to improve it, to send us material that they would want added, and to join our web forums and discussion groups, to help create the most positive future possible for the disabled children we are hoping to assist.


Lewis Mehl-Madrona, MD, PhD


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