<story><title>“We don’t do autism”</title><url>https://medium.com/@AutismJohnDoe/we-don-t-do-autism-d6de9d4f8913</url></story><parent_chain><item><author>codingdave</author><text>I&amp;#x27;ve been working with doctors for a while now trying to diagnose some issues, and while I share the author&amp;#x27;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 &amp;quot;normal&amp;quot; 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 &amp;quot;normal&amp;quot; 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.&lt;p&gt;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.&lt;p&gt;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.&lt;p&gt;But in this author&amp;#x27;s case, he had someone drill a hole in his brother&amp;#x27;s head. I&amp;#x27;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&amp;#x27;s condition.&lt;p&gt;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&amp;#x27;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.&lt;p&gt;EDIT: Yes, I stated the procedure incorrectly. Sorry about that. Please do not let my mistake detract from the larger point.</text></item></parent_chain><comment><author>Itaxpica</author><text>I&amp;#x27;ve started and stopped my own response to this article about a half dozen times, but this post gets to the crux of it very well. I&amp;#x27;ve worked in a research lab studying the neuroscience of autism (via MRI and FMRI, even), and this article is a classic example of a little knowledge being a dangerous thing. The author has taken a bundle of half-understandings about an extraordinarily complex field, and tried to tie them together in to a Unified Theory of Autism, with predictably bad results.&lt;p&gt;I don&amp;#x27;t really blame the author - it&amp;#x27;s the most natural thing to do in the world when faced with something like a loved one being diagnosed with autism, and this is far from the first time I&amp;#x27;ve seen it happen - but it&amp;#x27;s always a little frustrating to see.</text></comment>
<story><title>“We don’t do autism”</title><url>https://medium.com/@AutismJohnDoe/we-don-t-do-autism-d6de9d4f8913</url></story><parent_chain><item><author>codingdave</author><text>I&amp;#x27;ve been working with doctors for a while now trying to diagnose some issues, and while I share the author&amp;#x27;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 &amp;quot;normal&amp;quot; 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 &amp;quot;normal&amp;quot; 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.&lt;p&gt;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.&lt;p&gt;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.&lt;p&gt;But in this author&amp;#x27;s case, he had someone drill a hole in his brother&amp;#x27;s head. I&amp;#x27;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&amp;#x27;s condition.&lt;p&gt;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&amp;#x27;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.&lt;p&gt;EDIT: Yes, I stated the procedure incorrectly. Sorry about that. Please do not let my mistake detract from the larger point.</text></item></parent_chain><comment><author>pragone</author><text>This is an excellent reply to this article; it says what I wanted much better than I did below.&lt;p&gt;I just wanted to point out that I don&amp;#x27;t recall any procedure from the article discussion any sort of &amp;quot;hole drilled&amp;quot; into the patient&amp;#x27;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.)</text></comment>