This essay is to discuss my difficulties getting doctors to take me seriously. I realize that this problem is not experienced only by autistics, nor only by those with chronic illnesses, although chronic illness and autism both contribute to this problem for me. I am hoping to show here specifically why this can happen to someone with autism, although I have no good suggestions regarding what to do to correct this problem.

Here is one example: One doctor insisted for years that I was depressed. I knew otherwise; I was in fairly good spirits much of the time he was diagnosing "depression" in me. He based his assumption on these observations: I am very fatigued all the time, I do not make eye contact, and I have a "flat affect" (or "blunt affect"). However, in the absence of feelings of sadness, hopelessness, and helplessness, it makes no sense to jump to the diagnosis of "depression" simply based on those few observations. That would be ignoring the fact that there are other causes of those things. In my case, I am fatigued because I have a chronic illness, I do not make eye contact because I am "high-functioning" autistic, and my "flat affect" is also because of autism. These things are true about me no matter how good my mood is. This should not be mistaken for "depression."

Another example: For years, I had problems with my gallbladder. Once I figured out what was causing my abdominal pain, I asked a doctor (during an ER visit, I believe) about that possibility, and I was told that I was "not in enough pain" to be having a gallbladder attack. hmmm... How much pain must one be in to be taken seriously? This highlights another autistic characteristic I have: I do not express pain (or anything else) very openly. I also have a relatively high pain tolerance. Finally, I ended up at the ER again one night because I tried for hours to sleep but could not because the pain would not subside. At the ER, I figured that I should act more in-pain than I normally would, and this seemed to work, since the doctor came to the conclusion that I was having a gallbladder attack. I was given pain medication and referred to a surgeon who subsequently removed my gallbladder. My constant abdominal pain of several years is now gone since the surgery, thereby proving that I was indeed experiencing gallbladder problems.

I will say that I have one very good doctor who trusts my perceptions regarding what is going on with my body. I am very glad to have found such a good doctor.

Here are my conclusions regarding my experiences with doctors: Many (most?) doctors do not trust patient's perceptions of their own symptoms, preferring to see for themselves what is going on. Perhaps this works okay for most patients and most illnesses (except in the case of less-well-understood chronic illnesses, but that would make a whole different essay), but the practice of distrusting patients' verbal accounts of what is going on results in physician error when the individual is autistic and does not express discomfort and pain the way other people do. Autistic individuals typically: have trouble with eye contact, may not make much use of facial expressions and voice inflections, may have a high or low pain tolerance, may not express pain or discomfort openly, may have difficulty asserting themselves when the physician is obviously not understanding the problem.

So... What can be done about this problem? Wow, what a question. It would seem that this problem will not even start to change until physicians become more educated about autism, particularly "high-functioning" autism in adults. However, very, very few physicians are open to learning anything from their patients, so from where would such education come? I really do not know. In my opinion, doctors' attitudes toward their patients will need to change before this situation will change.