GEORGE AND TORY MEAD

September 12, 2002

LIGHT AT THE END OF THE TUNNEL
A Story About Hope And Recovery And Autism
By George And Tory Mead

Here are the tears of things: mortality touches the heart
Virgil

Anyone who has lived through the horror of watching a loved child fade slowly, in shades of gray, into a ghost, knows the devastation of autism.

In September of 2000, in the early morning hours, we lay awake, staring in the dark. "I want you to take as much video of William as you can," Tory said.

"Why?" I asked, knowing the answer.

"Because we are losing him."

Indeed, as each day progressed we appeared to be losing another small piece of the child we knew and loved. What was left was a living, breathing shell of the laughing interactive child we knew. It appeared that within a few weeks, nothing would be left.

This is not a story of grief, but of hope and recovery. To anyone who is lying awake, wondering what the future holds, know one thing: there is hope.

With every day, new discoveries are being made about the cause and treatment of neuro-behavioral disorders previously thought "incurable" and "life-long afflictions." The few health care providers, who were treating the children as biomedical patients and justifiably offered cautious opinions about the outlook for children with spectrum disorders, are now openly referring to dramatic "recovery" for a percentage of the children, and significant improvement for many, if not most, children.

The first step towards recovery is to discard the traditional concept of "autism" as an architectural (meaning inherent-in-the-brain structure), and as a psychiatric disorder under the Diagnostic and Statistical Manual of Psychiatric disorders (DSM4). These diagnoses see autism and "spectrum disorders" as hopeless, and caused by some mysterious genetic factor. The fact that most, if not all, late onset autism occurs in the depths of the childhood vaccine schedule is seen as entirely coincidental. The fact the majority of the children suffer from extraordinary metabolic, intestinal, immune and allergic syndromes is seen, again, as a coincidence.

Recent developments in medicine clearly show that, with biomedical intervention and early aggressive educational therapies, children can and do make dramatic progress toward achieving their full potential, often fully recovering. Now, in changing the paradigm, what was once viewed as an absolutely hopeless affliction, is now being seen by a small group of educated health care providers as a complex metabolic system breakdown. By treating each system, by rebuilding immunity, and addressing the body’s metal metabolism issues, gradual change and improvement is possible.

It is essential not to lose hope or purpose. It is also essential to rely heavily on what structure of faith or Higher Power you look to, for the will to carry out the job ahead of you. We have called this ordeal over the last two years "falling down the rabbit hole" and "life in war time". Both metaphors aptly describe the initial sense of confusion and unreality that accompany the early diagnosis.

WILLIAM

We, of course, feel William, along with his sister, are the most beautiful children on earth. William was a model for Pottery Barn Kidsä . William’s childhood health was essentially normal for the first two years of his life; with the exception that he had what we were told was "recurrent bronchylitis" and recurrent ear infections. These conditions, which were characterized as "normal" for kids, and "what the kids are going through right now," resulting in William having 15 courses of antibiotics by the time he was 18 months old.

Following his two-year vaccinations, William’s health appeared to sharply decline. He began to have rampant diarrhea (giardia, we were told), inexplicable sores on his back and chest ( flea bites, we were told) and he gradually lost weight. He developed what we later learned were "self-stimulatory behaviors," or "stims." He was rocking, twirling; toe- walking, clenching his teeth, squinting and grimacing. He would stand in the corner for hours, laughing to himself.

WHERE WE BEGAN

Like many families, our introduction to autism came via a hearing test. During the summer of 2000, William gradually grew unresponsive, unwilling or unable to play with his peers, and focused on a few small toys. Contrary to stereotype, however, he was, and remains, a warm and loving child. Late that summer, his teachers recommended a hearing test, and in October we took him to Oregon Health Sciences University. A specialist told us that William’s hearing was good, but that he would need to be evaluated at the "autism clinic." We remember our heads swimming and a cold sense of dread falling on us at the words "autism clinic." We asked the specialist if William would be able to fall in love, if he would experience emotions like empathy and sympathy. Her only answer was: "that’s a good question".

THE DIET

In passing, one of the therapists at OHSU mentioned that some of the children "responded well" to casein and gluten free diets.

It seemed odd to us at the time that diet would play a part in a neuro-behavioral disorder. How much and why, have been among the most incredible revelations in this journey. As we set out in the late afternoon, after the evaluation, we felt a terrible sense of loneliness, isolation and grief. There seemed to be no answers to this problem, and little if any hope of finding them.

The next day we started the diet. We removed every kind of wheat , rye, spelt, barley or oat product from our house. Many weeks would go by before we had identified all of the products containing gluten. We discarded all dairy products. As we went forward, we discovered landmines in even the most "innocent "foods. Processed sugar, for instance (not a good idea in the first place ) contains trace amounts of gluten as a drying and smoothing agent. Almost all commercial spices contain gluten as a smoothing agent. We threw out and gave away garbage bags full of food and spices.

To our great surprise, William’s eye contact improved within three days. His bowel movements, which had been terrible for months, solidified in ten days. His self- stimulatory behavior decreased within a month. We knew that something, which is an "organic brain disorder," would not be responding to diet. By six months on the diet, William made up 21 months cognitively, but still had scattered deficits.

In late November of 2000, the Northwest Autism Foundation held the first "OASIS" conference. This was the first conference of its kind in Oregon, and among the first on the West Coast. The conference was free, and focused on the subject of biomedical treatment of autism-related disorders. We decided Tory should attend. She returned, carrying a banker’s box full of books and literature, and supplements.

We have spent the subsequent year and a half reading, searching the Internet. Contrary to what you will hear from "mainstream" healthcare providers that the Internet is full of quackery, it is the most valuable tool available to the parent of the newly diagnosed child. It is a link with parents and brave health care providers. Unfortunately, "mainstream" doctors have not been very supportive or helpful. Fortunately, we found a pediatrician who, for many years, has thought outside the box on issues of vaccination and childcare and he referred us to a doctor who has been bravely practicing "alternative medicine" for many years.

TO BE CONTINUED ON MONDAY: The Meads Have William Tested And There Are Many Surprises