Moments ago I replaced the telephone handset in the cradle. For 3 weeks I've been talking with eager mothers and fathers who watched the same television show on Dateline NBC. The mother with whom I have just been speaking sobbed and sobbed with relief and hope and fear as I said that yes, the medicine discussed on Dateline might change her child's life. Most of the parents I've spoken with these weeks have cried as we talked.
Before our children are even born, we begin to dream about what it will be like to have them in our lives. Often our dreams are idealized -- the perfect baby, cuddly and smiling, grows to become the perfect little boy, running up to us with a great big hug and a, "Mommy, I love you!" We go to a parent-teacher conference about our little girl who is the star of the class. We play catch in the back yard. We take our family to Disneyland to share the magic of childhood.
But sometimes fears haunt our hopes -- something is wrong with our child. She's born with a congenital illness, he's snatched by a stranger, or she's hit by a car. Anxiety lurks beneath the surface of parent-love.
The parents I've spoken with share one thing in common: things didn't turn out for them the way they had hoped. Their children don't hug them with abandon or beam at them with delight. She doesn't play catch. He doesn't bring his friends over to play. These children have autism.
When they were born, everything looked wonderful. The parents went through the same sleepless nights, the same hours of joy that parents around the world experience. But as the months went by, the nagging suspicion that something was wrong began to grow. The child didn't start achieving developmental milestones quite as quickly as other
little boys and girls. Language came slowly.
The smiles of childhood disappeared from their faces.
Finally the diagnosis of autism was made -- usually at around 3 years of age. And with it a whole new set of reduced expectations. But like sleeping beauty, the old dreams don't die, they just slumber.
Tragically, parents are still sometimes blamed for the autism, even though the old notion that autism is an emotional response to inadequate warmth and love from the parents has been soundly disproved. Today, evidence for metabolic/neurobiologic abnormalities associated with autism is strong, although the exact mechanisms are poorly understood. Adding a hellish twist to the wound, insurance companies often don't cover services for autistic children, claiming that this is a behavioral problem, not a medical problem.
More than 500,000 people in the United States have autism. Millions of children are affected in cities and villages all around the globe, in every different culture. And with every single autistic child comes a wrenching change in the age-old hopes we have for our children.
Gary and Victoria Beck experienced this with their son Parker. Family videos from that magical first year are full of wonder. Parker toddled out of infancy full of enthusiasm and glee. But talking didn't come easily for him. At an age where others were beginning to speak clearly, he still mumbled only parts of words.
Shortly after his second birthday he stopped smiling. He stopped talking. He stopped turning when his parents called to him. He stopped looking into their eyes.
Parker became increasingly irritable -- and his mother's loving arms could do nothing to console him. High-pitched screams replaced his toddler giggles. And the only comfort he found came from oddly spinning and spinning and spinning around.
Like almost half of autistic children, Parker also had significant gastrointestinal symptoms, in his case chronic diarrhea. After 2 years of almost constant diarrhea, Parker had an endoscopy at the University of Maryland to look for the cause. Nothing showed up on the test.
But after the endoscopy, it was as if Parker had awakened from a spell. Within days a completely non-verbal child was smiling, recognizing Mommy and Daddy, and reciting flashcards. It was a miracle!
Victoria and Gary investigated every detail of what had happened to Parker during the test. They discovered that he had been given a small amount of a medicine called secretin. It was Parker's parents who proposed that this might be a treatment for autism. Parker received another dose of secretin followed by further intellectual and social
growth.
But those who heard didn't take the Becks seriously.
For a seemingly interminable year, doctors refused to give Parker any more of the medicine. He didn't lose his gains, but further growth stalled. Doctors refused, since secretin hadn't been approved by the FDA for anything more than use in diagnostic tests.
These regulations are designed to protect consumers from unsafe or unproven medications, and they are often very valuable in that function -- but they can also sometimes block good medicine. Robert Sinaiko, M.D. is a prominent San Francisco physician who researches the metabolic basis of autism. His interests include an important detoxifying enzyme -- phenolsulfyltransferase -- that is deficient in autistic kids. He recommends the controversial Feingold diet since it includes fewer phenolic compounds that need to be detoxified.
For this and for similar off-label prescribing for autism, Sinaiko recently had his medical license stripped. This travesty occurred even though no patient complained against Sinaiko's treatment, no patient testified against him, and no patient was harmed. The California Medical Association and 10 expert witnesses, including some of the
nation's most respected physicians, testified on Sinaiko's behalf. But the conservative Medical Board is very strict when it comes to new treatments for poorly understood conditions such as autism, attention deficit hyperactivity disorder (ADHD), chronic fatigue syndrome, and multiple chemical sensitivity.
But the Becks persevered with courage and determination. Finally their son Parker and others were treated. In January 1998, Dr. Horvath of the University of Maryland published, in the Journal of the Association of Academic Minority Physicians, a case report of 3 autistic kids who had been treated with secretin. Each had dramatic improvement in social behavior and language. Word quickly began to spread throughout the autism community. Many wanted to try secretin on their
kids.
By 1996, about 200 kids had been treated with secretin. About half of them reportedly had significant, objective improvement. Different researchers propose different mechanisms for why it might work. Some point to the role of secretin in the intestines to promote proper digestion. Others suggest that the secretin works directly on the brain
(there are secretin receptors in the hypothalamus of the brain). I suspect that the latter mechanism is more important.
Many other questions also remain to be answered. Large, long-term, controlled studies on secretin are much needed to confirm its efficacy, determine what subset of children with autism may respond, and decide what doses are safe and effective. Recent studies involving a small number of children have had variable results. If future research supports the efficacy of secretin, Victoria and Gary Beck can be credited for pioneering this revolutionary new treatment.
While much research remains to be done, secretin may be a promising treatment and major step through a new doorway into the treatment of chemical problems underlying autism. I hope that many families experience a dramatic awakening, either from secretin or from other therapies inspired by its success.
Parents of autistic kids weep when they hear that after receiving secretin Parker Beck looked at Gary and said, "Daddy" for the first time. The pent-up dam of hopes and dreams begins to overflow. The word "miracle" is often used in connection with the results some families have seen.
But let this poignant tale remind each of us that normal life is itself a miracle. Each childhood smile, the many words of our children (which sometimes seem too many), and those moments when they look us in the eye and beam, "I love you!" are nothing short of miraculous!