“We don’t do autism”

I was initially planning on writing this comment to retort a number of statements within this article, but there are far too many; additionally, they all seem to indicate a larger concept at work.

Let me first say that I commend this individual for going out and researching his brother's illness on his own. It is truly a dedicated family member to go to such lengths as to attempt to understand things to the level of physicians, and further to attempt to convince physicians of the "correct" answer.

The first and most practical issue I wish I had seen was a GP coordinating the care. In general, the overall goal is to have a single physician be "your" physician, who can coordinate the care among specialists. The general idea is to decrease the amount of repeated and unnecessary interventions by making sure everything is being done in a medically appropriate way; additionally, it provides the patient an opportunity to explain to a single provider his or her desires in seeking treatment, and to make sure that the specialists are informed of such goals as well.

However, he demonstrates a number a poor understanding of physician training and the role of the physician in today's society. First, on the issue of training: he seems to believe that all physicians graduate medical school and start practicing as full-fledged physicians. Rarely is that the case these days, as a residency is required in all or at least most specialties in order to qualify for sitting for the boards (the benefit is not only the additional training, but then insurance companies will actually pay for your work).

Lastly, on the role of physicians: While we've come a long way in the millennia since hippocrates, physicians do not know everything. They don't have every answer to every question, and they don't know the answer to your exact problem either. We still "practice" medicine, because we can't predict with complete certainty the outcome of every single case. At best, we can use intuition from experience and education, and science of the community to make our best assumptions. But medical providers will always be wrong, some percentage of the time.

That's one possible conclusion. More broadly, the morphology of the cerebellum matters a great deal, and minute differences from person to person A) could explain why autism appears to have such a broad array of symptoms and severities; B) have been largely ignored by medicine for decades due to mistaken convention, deep confusion among physicians over medical terminology (mega cisterna magna versus DWV) and a tendency for doctors to throw their hands in the air the minute they hear "autism" because it's simply accepted that it's too complex to diagnose; and C) suggest that brain MRIs may be the most cost-effective cost-preventive diagnostic tool available for those with autism diagnoses--which doctors hardly ever recommend due to (B).

> Which is to say that it’s clear whatever condition the strident, proud autistics have, it’s not quite the same condition as one that leaves you epileptic, mute, and generally unable to care for yourself.

I can understand the anger here, but please understand that the problem goes both ways. Some high-functioning autistics don't seem to get that the condition can be absolutely crippling, but their belligerence stems from a lifetime of people refusing to admit that they exist or that their experiences have validity. It's frustrating when people who don't know me assume that I need help dressing myself because they knew someone whose kid was severely affected.

I assumed that the author is himself an MD in another speciality.

1. The quote below. The most likely way the author would know this is that the author went to med school. Its possible the author interviewed MDs about their med school experience, but seems less likely.

In medical school, aspiring doctors spend a few minutes at most on these relatively unusual conditions, which are thought of, and taught as, rare. By the time many begin practicing medicine, many doctors aren’t even aware of the minute distinctions on the sub-spectrum of posterior fossa cysts, if they ever really understood them at all.

2.

I come, after all, from a family of doctors educated at “top” institutions. How could it really be possible that despite decades of intense trying as educated, middle-class people, we knew absolutely nothing?

I agree wholeheartedly. That is a very wise physician you found. I've had many great experiences with patients and their families who have dealt with serious, chronic illnesses, and, as a result, my treatment often relies heavily on their knowledge and experience with that specific individuals needs and disease processes.