Malingering’s World

Or at least socially detached enough that this stuff wouldn’t bother me.

Unfortunately I’m not.

The gluten free/ casein free people are over on my friend’s blog wreaking havoc. There are accusations flying left and right. People come soaring in with some insane agenda and then force feed the rest of the world their earth shattering anecdotes and insinuate that everyone else is just too narrow minded or too neglectful a parent to try anything and everything on their child in an effort to make them normal neurotypical. No amount of time, money or risk is going to stop them from a CURE. I’ve seen other online beatings on the blogs of other parents of autistic children and it makes me ill. Clearly these parents are well aware that these things are out there. Clearly they want the best for their children. Yet they’re being attacked like criminals for making a decision as rational as the decisions their opponents have made. Because there’s no scientific backing either way.

I did some of my own searching on the GFCF thing. I have come to no conclusions other than the fact that being a parent of an autistic child doesn’t decrease your risk of being an arrogant asshole and in fact can turn you into a defensive pseudoscientist name calling jerk.

Do you know what pisses me off more than the angry militants of the GFCF cult? Those people who villainize doctors and accuse them of withholding treatments or saying they “don’t know everything” because they apparently can’t Google like the GFCF/mercury people since it wasn’t a course in medical school. People like Jenny McCarthy who blames her doctor for the autism because her child was vaccinated. Or people like this person who turns one inattentive doctor into the voice of the entire corrupt medical community.

A lot of doctors are salaried. it doesn’t matter if they see 2 patients a day or 20, so really they’d rather see 2 and actually have the time to be thorough and spend some time with their patients. If they knew of a “cure” that would keep autistic kids and their moms out of the office, and make everyone feel better they sure as hell would do it. They aren’t making extra money off of watching people suffer.

Doctors who work in HMOs are often told what they can or cannot recommend as a treatment, and those are usually determined by national standard practice guidelines, not the MD. If doctors recommend some treatment that goes horribly wrong and that treatment varies from the standard guidelines, disciplinary action can be taken, the can be sued for malpractice, they can lose their licenses as happened with a number of DAN practioners. Most doctors didn’t spend decades of school and training and $200K of gov’t loans to lose their practice because they decided that a bunch of anecdotes they found online or heard about from a playboy model constitute data.

Most doctors are legally and/or ethically bound to practice evidence-based medicine (as in evidence as found in peer reviewed medical journals and have study arms of more than 10 subjects in each). Some do not feel it is ethical or within the Hippocratic Oath to recommend something which has no scientific backing. Does this mean they don’t know it’s out there? No. Does this mean they can’t Google like Titte McCarthy? No. Does this mean they responsible for the frustrations of having an autistic child? No. It means they have a set of ethical standards that they are constrained to because people trust them to do no harm. They have to think about public health issues like the potential consequences of NOT vaccinating a child, which can be devastating.

It is also very hard to recommend treatments to people when they are not FDA regulated. Sure pretty much everyone, autistic or not, will benefit from taking fish oil or omega 3s. But there is no FDA approved formula out there and there are no standards to hold the OTC supplements to. You send people to Rite Aid to pick some up and for all you know its made from fish from a toxic waste dump. There’s no one keeping an eye on the safety.

There is a shortage of family practitioners in the US. They are exhausted and overworked. They don’t have time to work against autistic parents. They’d prefer everyone prevented illness and stayed home and healthy. There’s no money to be made from autism or withholding treatment… What has proven to be incredible lucrative is fad therapy for desperate patients and their parents and the practice of treatments like chelation or medical marijuana or ass implants which are not covered by insurance. Then you can make a shitload and walk away filthy rich. And as seen with many DAN practitioners, they still practice medicine without a license and they still make a shitload of money. So where are the ethical guidelines there?

The more shit I read from the mercury militia and the Jenny McCarthys of the world, the more I realize that people would rather blame their medical practitioner than accept their kid has a developmental disorder and move forward from there. This is depressing to me. Everyone needs a villain. Some call it Mercury. Some call it Gluten. Some call it Doctor. I think I’m naming mine Arrogant Oblivion.

And while I’m ranting, let me just say that I hate those who justify a lack of clinical evidence by stating ( taken from here for example)“Although, in an effort to ameliorate the symptoms of autism in their children, parents have been investigating the usefulness of diets devoid of gluten and casein, for many years these methods have not been accepted by many orthodox medical practitioners. This is largely because there has been no hypothesis that has been sufficiently able to combine all the relevant evidence into a single, comprehensible series of events.” If it really works and the data is there to prove it, any decent scientist/MD/biochemist could come up with a hypothesis. It isn’t hard to pull one out of your ass if you have some good data to back it. If the results are that astounding, journals would not reject a study showing vast improvement because of a weak-ish hypothesis. If you look at other mental illnesses: bipolar disorder, schizophrenia, ADHD, generalized anxiety disorder - all purported mechanisms of the illness are simply theory and hypothesis, and after years of research the etiology of the illness is still unknown. Yet thousands of studies have been done on treatment efficacy and there are loads of clinical data. Look at research on depression. You can’t tell me that’s never been done. Enough with the excuses. Let’s start getting legit.

Sorry my blog isn’t funny right now. As soon as I work out this frustration we will get back to regularly scheduled programming.

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