One of the serious issues facing families of adults with autism is how to help an autistic person recognize and deal with health related issues. Because I am always in physical pain and discomfort is a constant in my life, it is challenging for me to recognize when a pain is something important. I have severe back pain and was even in a back brace as a teenager. I also have other injuries dating back to birth which cause shoulder and hip pain. For as long as I can remember, I have had headaches and migraines.
With my complicated physical situation, a few years ago I failed to recognize my vision was failing due to base membrane dystrophy. I thought the headaches were the familiar migraines. Once I had eye surgery, I thought pain and dizziness were the aftereffects and ended up hospitalized for internal bleeding instead. Over the years I have failed to recognize broken bones, bruised ribs, and even a serious hernia. Too often I cannot pinpoint the source of pain or its original cause.
It is understandable that my wife worries about me and she is not nearby. I know that I am not able to analyze my physical well-being. I do not understand why I am not feeling well and what actions I should take to solve problems. It turns out that aspirin does not solve every problem.
As I consider my own experiences, I do not know what the best advice is for other families. I rely on my wife, my mother, and other family members to help me recognize when I should see a doctor and even which type of doctor I should be calling. I doubt I could maintain my health living on my own if I did not talk to my wife on a nightly basis. Admittedly, even talking to her I have probably made some mistakes over the last few months.
Last night my eyes hurt a great deal. I had to decide if the pain was a response to lights at night, a physical tear in the eye, or the start of a migraine. I cannot easily determine when eye pain is a result of the membrane tearing because lights can actually hurt more than a physical injury. That seems to be impossible to explain to the ophthalmologist. All I know is that my eyes really hurt.
Truly independent living scares me. I believe I will always need someone to help determine when I should seek expert help. Thankfully, I have a wonderful life. If I did not, I believe it would be necessary to hire a personal assistant simply to have a "normal" person present who could help analyze situations. As it is, coworkers often point out when I am walking unsteadily, trembling, or in some other way seem distressed. It is as if I am unaware of my own physical limitations or what my body is experiencing at any given moment.
Some experts claim that autism is the inability to understand the internal thoughts of others. I wonder if my autistic traits include a failure to understand my own experiences, especially an inability to interpret pain and discomfort.