Since my teenage son Charlie was diagnosed with autism almost exactly 12 years ago in 1999, we’ve learned about a baffling array of treatments. Special diets without gluten and casein; supplements galore; hyperbaric oxygen therapy; secretin, a digestive hormone from pigs; prism lenses; “holding therapy”; swimming with dolphins; stem cell therapy; chelation; saunas. We’ve tried a few “non-traditional/alternative medicine biomedical treatments and mostly stuck with education and school and some medications.
Charlie has made good progress with these. Things can be extremely challenging — my son’s on the moderate to severe end of the autism spectrum — and it’s no wonder that parents try treatments that are experimental and potentially dangerous. When your child who requires 24/7 care at the age of 14 doesn’t sleep for a few nights — meaning, you don’t sleep for a few nights — or throws himself against the window of your car because of what you suspect (because he can’t tell you in words because he can’t) is massive constipation (sorry for the gritty details), you can be willing to try anything, including something like lupron.
Lupron is a drug prescribed to men with prostate cancer, women with fibroids and sex offenders (using lupron has been called “chemical castration”). It can be prescribed for children who have a rare condition, precocious puberty. It’s not approved for use with autistic children but a Maryland doctor, Mark Geier, has been doing so for some years, with some parents quoted in a recent Baltimore Sun article like Lin Wessels and the Rev. Lisa Sykes swearing by the drug’s effects, even though Mark Geier’s the medical license was recently suspended by Maryland Board of Physicians.
A recent article in The Atlantic about the “triumph of new-age medicine” points to one reason parents and others use treatments like acupuncture, even as scientific studies often find they are no better than a placebo. A major reason is not about the treatments themselves but the care and attention communicated by many practitioners of alternative medicine. As David H. Freedman, this is why ”the medical community seems to be growing more open to alternative medicine’s possibilities, not less”:
This “healing” approach to patient care clearly isn’t found in the typical visit to the doctor’s office. Studies show that visits average about 20 minutes, that doctors change the subject back to technical talk when patients mention their emotions, that they interrupt patients’ initial statements after 23 seconds on average, that they spend a single minute providing information, and that they bring up weight issues with fewer than half their overweight patients.
Many medical students start out with a healer mentality, but few retain it. “It gets beaten out of you by the system,” says Brian Berman, noting a study showing that medical students score progressively lower on empathy tests the further they get into their training. Berman himself was a conventional M.D. until, at age 33, he took up the study of traditional Chinese medicine—which, like many alternative approaches, is largely focused on patients’ lifestyles, feelings, and attitudes, and which emphasizes stress reduction, healthier eating, and regular exercise, as well as encouraging the patient to believe in self-healing. “I saw how much more I could do to help people,” he says. “For the first time since medical school, I felt like a healer again.”
I distinctly remember the soothing mauve and soft grays of the office of one nutritionist who we consulted for several months as she was recommended as specializing in biomedical treatments for autistic children. She met with parents in an office with couches and tea and paintings in matching muted tones, instead of the clinical confines of an exam room at a pediatric practice. I’m not sure what Mark Geier’s office is like but can imagine his sympathetic stance about the failings of traditional medicine (something the nutritionist we saw also had) is readily welcomed by parents who feel they’ve been given the cold shoulder by “regular” doctors, especially if they’re trying to explain to those doctors that none of the medications, none of the therapies, seems to be helping.
Two years ago, we found a neurologist in southern New Jersey who has helped Charlie tremendously by figuring out a good combination of medications for him to take. Also, his office staff — especially a wonderful psychiatric nurse, whose own late daughter was developmentally disabled — have not only been kindly and accommodating even when Charlie has been extremely upset. They respond quickly to phone calls and offer lots of advice and a compassionate ear. In other words, they provide individualized patient care and it makes a huge difference.
Freedman says that doctors today are acknowledging some of the failings of modern medicine and high time. When you’re sick, or have loved one who is, care and attention can be as important as getting your prescription refilled.
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