I recently posted about Autistic people and the expression of pain. One thing that has become clear to me is that not only do we not have the same relationship with pain as non-Autistic people, people in the wider environment constantly invalidate that relationship because they don’t want to believe our lived experiences.
There are a lot of aspects of Autistic life in which we don’t highlight the disparity in cultural competency amongst professionals. Unfortunately, healthcare is not a battle we cam choose to walk away from. Our lives literally depend on being taken seriously and treated respectfully. There are some troubling statistics around Autistic life expectancy and mortality. In my opinion, there is correlation, if not a causative relationship between medical mistreatment of Autistics and these harrowing statistics.
Of the statistics, I have seen life expectancies around the age of 36 to 39 years of age (see here and here) for Autistic people. I have also seen suggestions that we are 51% more likely to die in a given year than the general population. I don’t think I need to push the point much further. It is clear that we are not a demographic that necessarily has the best outcomes in life.
Our experience of pain is intimately linked with our sensory experience. In particular, interoceptive differences mean that we can have a completely different response to pain than our non-Autistic peers. Monotropic brains mean we might not be able to stop thinking about the little pains, but may not even notice something significant or life-changing.
The way we embody pain is different as well. Autistic people are known for having different physical expressions, and when you throw in the significant relationship between the Autistic community and the chronic pain community, we can see why an Autistic person may not appear to be in as much pain as they claim to be.
This doesn’t absolve medical professionals of their lack of understanding. When a person works in healthcare, they should be taking people seriously, regardless of whether an ailment presents in the way that is expected or not.
I posit that dismissive attitudes amongst medical professionals and medical gaslighting lead to further health complications from i jury and illness. To consider it another way, if doctors took us seriously, we would probably live longer and happier lives.
For those working in healthcare, I applaud the care you give to many, but there is so much not being done for Autistic people that it can not be ignored. Autistic people are dying every day from ailments that needn’t have been terminal. Next time someone tells you their experience, believe them.