“Our Family is Different”
In the sixth grade, my father sat me down for a “serious talk.” This was the first of a few “serious talks” he would need to have with me over the course of my childhood. As a diagnosed autistic person (Asperger’s at the time), I was going to experience things differently. And in a world not made with people like me in mind, I was going to need to behave differently in order to protect myself. This talk centered on “pain tolerance” and the problems I would likely experience due to experiencing pain differently than the neurotypical people the medical community most often encountered.
By the time he sat me down, my autistic father had already encountered several life-threatening problems throughout his life due to what he called a “high pain tolerance.” He would encounter many more in the future. His warning still feels the way other social scripts feel when I think about them.
“The people in our family must be very careful about handling pain and things hurting in our bodies. Your grandfather may have lived much longer if he had taken this seriously, and I’ve had to acknowledge that I can’t listen to my pain the way most people can… to use pain to decide how serious the problem is. So here’s the jist: if you feel like you are in enough pain to require sitting or lying down, you must go to the hospital or doctor’s office immediately because your life may be in danger.”
His fear was warranted. My grandfather died in his 30s due to an infection that he “should have been” able to feel. Doctors then suggested he was “powering through it” to appear strong. The rest of his family doubts that conclusion.
In grade school, my father hit a tree on his bike and ruptured his spleen. He took some nausea medication, laid in bed before eating dinner, and woke up septic requiring emergency surgery. His sister, my aunt, also thought she had indigestion when she had a ruptured appendix. This warning was important for him to deliver and important for me to receive. It would foreshadow a lifetime of being taken less seriously than I should have been because, no matter how many times I ask them to stop using pain as an exclusionary factor for me, they don’t believe that I might be experiencing a medical emergency if no tears are escaping my eyes.
The Science of Objective Pain Responses
The autistic community often pushes hard against the idea that “pain tolerance” is higher in autistic folks than others. This is warranted and important because the idea that a neurotype can’t feel pain can, and has, been used to dehumanize us and inflict inhumane “treatment” without adequate pain relief. When I was 8 years old, I was at the dentist loudly protesting a typical cleaning procedure. When it came time for them to fill a cavity, they placed a restrictive tube of tight fabric around my torso and propped my mouth open to access the offending cavity. When they injected my gum with lidocaine, it did not reach the desired area for some reason, and the staff could not identify the difference in my screams. I endured the drill and the metal filling (still intact and shiny today) being placed into my molar. While situations like this must be acknowledged, the fact remains that many autistics, such as myself, report differences in pain sensitivity that may root in well-known differences in our interoception ability.
A 2013 research study by Dr. Alley included an analysis of fifteen separate research studies examining pain sensitivity and thresholds in autistic people. 10 of the 15 studies reported findings that indicate the idea of pain insensitivity in autistic children should be re-examined. Alley’s work suggests that the real issue is the difference in how autistic children express their discomfort. Crying, screaming, or moaning, may or may not be present regardless of whether or not the child is feeling an pain. Later research suggests that pain is likely not experienced differently in a physiological way, but that pain thresholds differ for autistic individuals. To me, that makes sense with a population of people who mask their discomfort daily to ensure their safety and the comfort of those around them. We may report hyposensitivity to pain while experiencing hypersensitivity or pain at a typical/higher-than-typical magnitude.
The overwhelming research conclusion is that autistic people may experience pain to a greater degree while reporting it to a lesser degree. Is this true for me? For my family? I don’t think so… subjectively. But perhaps it is.
My Experience and the Problem with Subjective Pain as a Medical Indicator
As a child, my father advocated for me when we were asked to “rate my pain.” He would assure doctors that they shouldn’t solely base their diagnosis, or lack of a diagnosis, on whether it “hurt.” This included broken bones, dental problems, digestion problems, and probably many more issues I don’t recall that were ignored or almost ignored.
As an adult, there have been many more occurrences when medical professionals have not taken my limited pain response/heightened pain threshold seriously:
- At 18, when I broke my clavicle playing sports and was told to continue playing because it didn’t seem that bad. It was two follow-up medical visits before anyone performed an x-ray.
- When I was a 21-year-old bartender, walking and working on my feet with a broken ankle for 2 weeks… because I had been assured that “if you’re able to walk normally, it is not broken. *here’s a splint*”
- Giving birth (unmedicated by choice) at 23, when it took 3 hours of pushing and my firstborn hitting her head against my pelvis repeatedly before the doctor realized I may need an epidural to relax my pelvic muscles enough.
- Giving birth the second time at 26: When I asked for the epidural as soon as I felt that I needed it, the nurse told me, “we want you to be losing your breath a bit before we hook up the epidural.” 4 hours later, after repeatedly asking and being given reasons I needed to wait longer, I finally sat up to have the anesthesiologist clean off my back, only to feel my baby crowning and deliver unmedicated before the doctor could get his gloves on. The same nurse who denied my pain relief and never checked whether the labor was progressing as rapidly as it seemed pushed my head backward into the pillow to prevent me from pushing and delivering the baby before the doctor arrived.
- At 28, when an eye infection was ignored for several days and several visits because, while my vision was cloudy, it didn’t hurt.
- At 31, I sat triaged in an ER waiting room for 6 hours, with a ruptured appendix leaking bacteria into my abdomen the entire time without being seen… even after a preliminary diagnosis of appendicitis from the Urgent Care across the street. Because if I wasn’t crying, it must not be life-threatening. By the time I walked up with tears in my eyes asking for ibuprofen, I finally earned an MRI. Then I was rushed back for emergency surgery. When I awoke, I found out that the primary reason I probably knew about my appendicitis earlier than my aunt had was that my inflamed appendix was making physical contact with a 7 cm ovarian cyst, which caused more “pain” than I would have ordinarily felt.
- Just last week, the urgent care nurse poked my kidney after I had told her I suspected a kidney infection. When I said, “No, it doesn’t hurt, but..,” she cut me off, only to walk in later to say, “You actually do have a kidney infection.”
- The worst case for me as a mother so far was when I begged for an x-ray of my daughter’s foot because “while I know she is smiling and seems comfortable, she is not playing or moving around like usual (she felt enough pain to need to sit down, thanks dad), which in my and my family’s experience means something is wrong.” After an eye roll and agreement to do an x-ray for what they surely assumed was an overprotective mother, the results indicated she had broken her foot… in 5 places.
When I mention my pain threshold and the issues it has caused, I see a common expression in medical professions. It’s somewhere between disinterest and an odd smirk. I can’t remember a time when I was taken seriously until the problem had progressed or resulted in a serious complication. Every time I observe this expression and consequent disregard for my concern about pain and whether it should be used to determine the severity of an issue, I feel afraid. I feel afraid because I know how easily issues can and have been missed as a result, and I have experienced these misses leading to more serious complications and death.
While in labor with my third child, the same doctor who had delivered my second child assisted in the delivery of my son. He instructed the labor and delivery floor nurses to give me an epidural as soon as I asked for it. He immediately began checking on the progress regularly… which interestingly, was what I had asked them to do the last time. If I hadn’t spoken up though, my child and I could have been put at serious risk.
So What Should Medical Professionals Do?
Following disclosing these pain differences, there are a few ways I would have liked to be engaged with:
- Take it seriously the first time. Ask follow-up questions and consider whether it should matter for the issue.
- Recognize that there would be no discernible benefit to a patient who lied about such a concern. They would not be able to access more pain medication. In fact they would receive less.
- Understand that a person mentioning such a difference is likely rooted in their history of having serious concerns treated as mild concerns due to the difference in their expression of pain. Do what you can to ensure you don’t become the provider in another one of those experiences.
- Generally, using a patient’s stated experiences as a diagnostic tool, however unusual it sounds, is an ethical and objective way to practice medicine.
- Recognize that ignoring something like this is how doctors have inadvertently failed to catch and treat life-threatening conditions. Strive to err on the side of caution.
- And finally, remember that autistic people and others with less obvious disabilities don’t have to disclose their disability to you if it does not affect the current concern. They may choose not to do so because of the stigma experienced in medical settings, just for acknowledging that they are an autistic person. It’s fair to assume that a person is trying to give you more relevant information, and assuming so will not hinder your treatment.
The experiences that I have had are just a few examples of how and why this standard is not being upheld for autistic people with differences in pain thresholds or expression. It’s the medical professionals’ responsibility to ensure each of us receives an inclusive and understanding standard of care.
References
Allely, C.S.. (2013) Pain sensitivity and observer perception of pain in individuals with autistic spectrum disorder. ScientificWorldJournal.. doi: 10.1155/2013/916178. PMID: 23843740; PMCID: PMC3697411.
Marco EJ, Hinkley LB, Hill SS, Nagarajan SS. (2011) Sensory processing in autism: a review of neurophysiologic findings. Pediatr Res. 2:48R–54R.
Moore, D. J. (2014). Acute pain experience in individuals with autism spectrum disorders: A review. Autism. https://doi.org/10.1177/1362361314527839
Yasuda, Y., Hashimoto, R., Nakae, A. et al. Sensory cognitive abnormalities of pain in autism spectrum disorder: a case–control study. Ann Gen Psychiatry 15, 8 (2016). https://doi.org/10.1186/s12991-016-0095-1