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.
This article is a very mixed bag, as you pointed out. The author clearly went down his brother's rabbit hole - very narrowly focussed and coming to a set of conclusions. I did a similar thing with my child and probably still do.
I consider my child to be an Aspergers. Very bright (98th and 99th percentile in almost all areas measured under WISC, or the Weschler Scale). Along with it came violence and a lack of empathy and poor social skills. I was at (or called by) the school almost 5 days a week for behaviour issues before diagnosis.
Like the author of the article, most people I spoke to left me feeling they knew nothing, until I found an Occupational Therapist (someone who considers environmental factors that impact an individual).
We've ended up with a reasonable success story after 3 years of intense focus. It could be time, management or both that made the difference.
There are too many things to rebut in this article. Yes, it's an industry where the overwhelming majority seem clueless beyond diagnosis. Spectrum is used elsewhere to describe one attribute varying: get over it - here, it describes a variation of behaviours and symptoms, a simple model to aid discussions. I am sure many types of autism can not be cured. It's not a disease because in many cases, it requires management/therapy to lead a normal life (as per my child). I would not call that political correctness, just common sense.
I'm not going to reread the article to critique on more detail as it was too fragmented and too negative. However, if you are starting out as a family member of someone with autism, I do not recommend this article in the early days. Find someone who can do more than diagnose symptoms: you need someone with suggestions. Most experts will bamboozle with double speak of promises and uncertainty. The ones that I found who knew their stuff pinpointed solutions in 1 session. I found 2 experts that I had confidence in.
In dealing with tough problems like Autism, unknown autoimmune disorders, etc. Trusting a physician or even many physicians to make the right diagnosis is a gamble. It's even harder to find a physician who truly listens to the patient/family.
After much struggle with my sons rare condition, we found a physician who was able to help diagnose the problem. At one point he said "Your experiences in dealing the problem and the things your try that succeed and fail are far more important than my training... I'm here to help by listening and adding my experience"
In the case of a disease that I had, after seeing many many doctors and a year of tests, it was my dad on the periphery who figured it out exactly and then sent me to the right specialist.
Doctors are right some percentage of the time, but patients/families can have a great effect on coming to the right diagnosis.
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.
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?
Interesting. I did not make that assumption, but you may very well be correct.
I understood the first comment as merely an assumption, rather than personal experience. Again, I may be wrong.
I would expect a physician to have an easier time convincing colleagues to run something as non-invasive as an MRI, but that may no longer be the case in many institutions.
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.