Here’s a familiar one for parents of autistic kids:
Doctors and Patients, Now At Odds, the July 29th New York Times‘s trumpets. Jim and I do have our arsenal of just really terrible, not happening, not helpful, stories with pediatricians, child psychiatrists, neurologists, an immunologist, the psychologist who was on the team that diagnosed Charlie, and the ENT who told not-quite-2-year-old Charlie “adios.”
Then there’s been the pediatric neurologist we drive almost two hours a couple times a year to see. He listens, he observes, he and Jim and I have a conversation (he inevitably mentions his own kids), he fiddles and gets distracted and asks questions and we get distracted; he makes a passing comment that’s just enough outside the box so we know that he’s got his eye and mind on Charlie. I’m not sure that everyone would like to see this neurologist, but it’s been several years we’ve taken Charlie to him and it’s been a good interaction, and a relationship.
About one in four patients feel that their physicians sometimes expose them to unnecessary risk, according to data from a Johns Hopkins study published this year in the journal Medicine. And two recent studies show that whether patients trust a doctor strongly influences whether they take their medication.
The distrust and animosity between doctors and patients has shown up in a variety of places. In bookstores, there is now a genre of “what your doctor won’t tell you” books promising previously withheld information on everything from weight loss to heart disease.
notes the New York Times. Perhaps it’s no wonder that parents of autistic children may have an unconscious aversion to doctors delivering expert opinions; doctors once (and more recently, this talk show personality) said that we caused our kids to become autistic.
Now, too often, it seems, parents of autistic kids are doing a U-turn out of the “traditional” doctor’s office and heading into the often kindlier, or less clinical climes ,of alternative health practitioners. I grew up going to a big California HMO for all of my appointments and a nice Victorian house with lilac and aqua blue draperies, tasteful flowers and a nice shelf of the latest autism and “is this my kid?” sort of books, and herbal tea, can seem not only a welcome relief, but what it should be like to see the doctor who’s supposed to be taking care of one’s precious child’s health. These days, doctors and what some call the “medical establishment” seem to have no choice to go on the defensive about immunizations and the latest public health worry, be it cell phones and cancer to plastic toddler toys.
Maybe it’s not DAN! doctors that should be talked about, but DIY doctoring.