• Tue, Jul 29 2008

The Dangers of DIY Doctoring

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.

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  • Regan

    Is it just doctors or more particularly doctors and mainstream medicine? Based on your post the other day about helicopter parents, and some sentiment about professions, industries, and institutions I just wondered–do people in general second-guess and lack trust and confidence across a broader swath?

  • http://www.autismvox.com Kristina Chew, PhD

    Mainstream, “traditional” doctors but I suppose the “question everything attitude” would be good to apply to any “medical” health practitioner. It’s been helpful to size up many, for us.

    On your second point, I do think people feel it’s on them to take things into their own hands, to research, to ask questions, to doubt; we’re in the era of personal responsibility for one’s health needs, it often feels? (do you think?)

  • http://storkdok-nos.blogspot.com/ Storkdok

    I wonder how much the DAN doctors are questioned? Seems like the parents who go to them accept their opinions and certainly don’t question their fitness to practice medical management of autism.

  • brstpathdoc

    Such are the slings and arrows of being held to a higher standard than 99.99% of other occupations. If you don’t realize that when you plow through medical school, it becomes manifest pretty quickly once you’re unleashed upon an unsuspecting public. You aren’t allowed mistakes or human frailties. Plus, the internet seems to have obviated the need to rely upon the MD’s clinical experience, in some eyes. Jenny McCarthy has her degree from Google U – how can we compete with such credentials?

  • Beth

    I think the shift in thinking came with the advent of the managed care health system about 25 years ago. Now, people are expected to play an active role in managing their own healthcare and not just to put all of their faith in their doctors. This has caused people to develop more of a consumer mentality. While I think there are benefits to this in terms of people becoming more educated and responsible than before about health issues, it has caused some people to think that doing online “research” is the equivalent of attending medical school.

  • http://www.mumkeepingsane.blogspot.com Leanne

    I think, for me, I have a problem with the answer “because I said so”. So if I ask my doctor if something is proven safe, and I want to know details, than I want him/her to give me information not platitudes.

    Having said that, I love my pediatrician, we have a great relationship, and I really trust her medical opinion. But she did have to earn my respect and I think that’s important.

  • Regan

    So if I ask my doctor if something is proven safe, and I want to know details, than I want him/her to give me information not platitudes.

    Interestingly enough the person who most recently got steamed at me for a request for details was not our pediatrician or my current GP, but a DAN practitioner who we were checking out a couple of years ago. I wasn’t intentionally trying to get under his skin. The level of questioning was not above that that I usually ask the doctor, (but I’d be the first to admit that I ask a lot of questions because I want to understand the prescribed treatments).

  • http://www.autismvox.com Kristina Chew, PhD

    Jim always asks a lot of questions too—the hard ones especially.

    Yes, it’s a consumer mentality now—–my parents both worked in hospitals (neither are doctors) and they talked a lot about this shift.

    @brstpathdoc, So my initial career plan as a kid was to get the MD behind my name; couldn’t get my mind around chemistry and physics in high school and that was that.

    Maybe we can just start calling McCarthy…..”Dr. J.”

  • http://mayfly mayfly

    Our daughter’s first pediatrician told us to wait when we described our daughter’s developmental regression. Some months later the HMO required all pediatrician’s to be well versed in the signs of autism.

    I’ve questioned a Dan Doctor or two. They state they are fully in favor of double-blind crossover studies. But there is no time for such things with your child. They continue telling the parent they have seen the protocol work. Many are quite sincere.

    The reaction of most parents is, let’s give it a shot.

    The first Dan doctor wanted to user NAERT on our daughter. This concept was such ridiculous quackery that we never went back.

    However we tried a couple of others and soon we in areas where we lacked the expertise to evaluate the claims.

    It was the ineffectiveness of what we tried and our unwillingness to chelate which led us away. Though I still have thoughts that someday the DAN community will stumble onto something which will truly make a difference.

  • http://mayfly mayfly

    @Kristina. Did any of your friends/relatives suggest “Chinese Traditional Medicine” to cure/mitigate Charlie’s autism?