“We don’t do autism”

He spends a lot of time trashing the physicians because they won't do additional workup and chase MRI abnormalities. When he finally gets somebody to do something, he just put his brother in some temporary pain without any long lasting improvement.

Yes, the doctors debated on if he has this or that specific condition, because ultimately it didn't matter because he has a condition that isn't fixable. Doctors are best trained to identify what is fixable.

Disease states are fuzzy. Many times if somebody has a disease is not boolean in nature. However, all the doctors correctly predicted that current medical knowledge had nothing that would be helpful.

If they would have just believed the physicians, they would have saved some money and the patient some pain. Autism is an awful collection of diseases, but slamming the medical system in this case is not justified.

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.

I've been working with doctors for a while now trying to diagnose some issues, and while I share the author's frustrations (believe me, it can thrash your life to shreds if you let it), he seems to be falling into a danger zone that I have been warned about. Which is that "normal" ranges of almost every metric on the human body are not well defined lines. Rather, they describe a bell curve or measurements, such that 6% of the population will just naturally fall out of the "normal" ranges. So a number that is 5, 10, even 50% beyond normal does not necessarily indicate a problem. Not in the slightest. It could very well just be normal variations between humans. But people searching for answers tend get a laser focus on such things, thinking they have found the clue that will lead them to an answer. Most of the time, they have not.

And we who search for answers also hear the stories of others like us, spending years trying to get a diagnosis, who did find the one clue, and did follow that to a diagnosis and treatment, which turned out to be correct. But those stories are outliers. Most of the time, we are wrong.

Doctors know the numbers. They know that for every 100 people in our situation, 99% of them will have the common answers, and that why they treat us the way they do, and give us the advice they do.

But in this author's case, he had someone drill a hole in his brother's head. I'm not going to judge that decision, there are days I would try some pretty extreme things myself. But I can absolutely understand why doctors would not be jumping up to perform that procedure. And at the end of the day, it did not change his brother's condition.

In my mind, that is the real point of this story. Most of our own medical theories coming from our internet research are wrong. Not all. And I absolutely do not want to discourage people from seeking answers. You do need to be your own advocate in today's world. But I also have to believe that if you are asking for medical procedures and multiple doctors are turning you down, it is worth listening to their reasons.

EDIT: Yes, I stated the procedure incorrectly. Sorry about that. Please do not let my mistake detract from the larger point.

These were certainly important points of the article. However, it was a shotgun blast that covered much more, incompetent medical profession, inconsistent terminology causing confusion, stonewalls for patients diagnosed with autism, etc. it tried to capture too much in too little space.

This is an excellent reply to this article; it says what I wanted much better than I did below.

I just wanted to point out that I don't recall any procedure from the article discussion any sort of "hole drilled" into the patient's head; I believe it was just the MRI and the lumbar puncture that were discussed. The latter is a procedure where a physician puts a needle into the area of your spinal cord down near your lower back. (This area is continuous with the brain, and hence draining CSF from this area will also decrease intracerebral pressure.)