Answering Questions About Pain

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We are conducting a study about how people with disorders that cause struggles with communication and perception (Ex. Autism, ADHD) answer questions regarding pain, specifically in an EMS setting. If you have any experiences or know somebody who does please share your story with us.

To explain our purpose more, “we” is just me and my friend. We realized that everybody that we know that is autistic or has ADHD would struggle answering questions about pain in an EMS setting, and wanted to know if it is just us or if it's a common problem. It didn't take much research to see just how little people know about autism and pain, so we decided to do the research ourselfs.

!	Cornflake wrote:
	Approved.

That is a really good study. Are you able to provide examples of questions you might have? That would help me figure out what to share.

When asked to indicate my pain level on a scale from 0 to 10 I am unable.

I do not have a gauge to read the answer from and I don't want to give an incorrect answer.

If I think the question will come up I try to have a few copies of the "Comparative Pain Scale" handy.
Note: That scale can be found on multiple locations on the Internet and I do not know it's original source.
That scale allows me to give an answer that is objectively correct.

Hope this study makes some groundwork in Autism and pain . But I have seen extremes of physical pain due to accidents. Find my sensory can get dumbed down quite abit . Had a broken finger once for three days before noticing it was misaligned with the rest of my fingers. It was not preceptably sore . But spent a lifetime of pain , it seemed , occassionally even still on somedays After Vehicular , Accident Motorcycle vs auto . High speed 2/3 body crush .
More than a year to bee able to walk without assistant .. Prognosis at the time ny ER was vegatable and wheelchair bound for life. But they did not tell me till some 15 yrs later . So I decided not to follow their prognosis. Am now right handed due to the spinal cord nerve root evulsions that control some left side functions . But still left dominate. And learn to madk other permanent physical disabilities, besides autism. When I hurt at a 8 or 9 in the ER due to repeated visit over the years . I have to say that I am at a 5 or 6 , otherwise , I watch the Doctors faces smirk , and know from experiences , when in Nursing career, that his expression would instantly consider a person claiming high pain as
" Drug Seeking Behaviour" .But then 30 + yrs later, when am not hurting easy to happily say a zero .On those rare days being in my 60's now ..Lolz SIGHES.

I had not seen the Comparative Pain Scale. Very interesting and very very strange to me, because it describes sources of pain in what to me is a very jumbled order. Anything involving something sharp that breaks the skin is far more painful to me than any internal pain like a headache, back ache, or toothache.

I have a herniated disk in my back and when it first happened in 2009 I was bedridden for two months and getting up to use the bathroom was excruciating. I once had an infected tooth and the side of my face swelled up. It hurt so much I was crying. Neither of these is nearly as painful as getting a needle stuck into the crook of my elbow for a routine blood test. Blood tests are the worst pain I've ever experienced.

I've been told (by a professional but who knows if she really was well informed) that high pain sensitivity on the skin is an autistic trait, and low skin sensitivity can also be an autistic trait.

I've seen this in clinics:

I could probably use it if they asked me to, but I'd want to put error bars on my response, and they'd probably ignore those. And the face for very severe pain doesn't reflect what my face would be - pain hasn't made me weep since early childhood, though I've experienced it. I suppose it's necessary to fudge and oversimplify what you tell doctors, just like you have to do that with practically everybody.

Find this disturbingly true ..... And found everybody kept telling me it wasn't that bad.. Or be quiet your disturbing other patients . My face usually looks extremely stern when the intensity is off the charts ....and might be doubled over at times .. With all my muscles tensed in my body ... .....
But it never fails to amaze my Doctors seem to under estimate my pain situation

I have very intense pain through my right leg, especially in the knee. I have moderate pain in my left knee.

Sorry to hear this Cockney rebel . Might suggest a treatment that I used for my knees that worked well . If you wish can
pm you info . ?

I asked my OT about this topic today and she said she'd send me some info on best ways to communicate pain or physical / mental health symptoms to medical personnel. She also said she would help me plan what to say to my own doctor to remind her of my struggles in this regard, even though I'm sure I've told her before.

I'll post whatever she sends me, in hopes that it might help your research.

My own experience is that I don't know how to label things with one word or a specific name (e.g., heartburn), so instead I'll spend 20 minutes describing the scenario when it happened and weird metaphors of what it was like. This ends up making me seem dramatic or feeling like a hypochondriac since simple complaints turn into long sagas unnecessarily.

I suppose my best example was when I had a stroke and the emergency doctor insisted I was faking it (and/or drunk) because I didn't stroke properly, or in the ways a neurotypical would. The same goes for my recovery in stroke rehab when they expected me to meet NT benchmarks, and they thought I was faking it or exaggerating my impairment if I couldn't rehabilitate toward acting NT. I didn't know how to say "I could never do those things (x, y, z)", so instead I just had meltdowns and flipped out on the therapists as if they were doing something wrong. In hindsight, they actually were doing something wrong but I didn't know how to say that in a calm and reasonable way.

on august 23, 2012 at approx. 4PM, i was mountain-biking when a pack of deer materialized on either sides of a road on a mountain top, with a steep drop on my left and a higher portion of mountain on my right. they ended up in the same 3D physical space at me simultaneously and they won, knocking me head-first over the handlebars in a bloody crime-scene heap about 6 feet in front of my bent and busted bike. for a few seconds i was in a visceral cloud of the worst pain i ever felt in my life combined with the horror of having multiple broken bones and compound elbow fracture, then thanks to endorphins the pain slowly evaporated into a faux sense of well-being which enabled me to get up, assess the situation, and drag my busted butt and busted bike 3 miles up and down hills until i reached my tin can in the woods, dripping blood every step of the way, and when i got into my kitchen i sat down under fluorescent light and saw i needed surgical attention and bled all over the floor, so i cursed abundantly and drove myself to the ER 13 miles away at night with one hand on the wheel and encroaching shock. i finally staggered into the ER and i told them what happened to me, and henceforth was referred to as patient "deer vs. bicycle." they operated on me and put me on a morphine drip, that didn't take away the sting of the IVs in me, but it did numb me to having approx. 2500cc of urine stuck in my bladder that they had to cath me to get rid of, thank god almighty! but normally i have a low tolerance to pain to the point where bee stings floor me. i feel every jagged bit of unpolished metal in hypos that are injected into me. those things are excruciating to me. the physical therapy required to regain function in my left arm took 6 months of constant painful work that would make me sweat bullets. i had to use a TENS set so high that my arm violently vibrated to be able to block out the pain of making my scarred arm and elbow work again.when the doc took out my staples i fainted and had to lie down. when my lumbar/SI joint and hips went out on me over the years, i was barely able to move and there'd be murderous pain breakouts that would bring me to my knees in agony. a mixture of ibuprofen and hydrocodone would barely touch it. that required me to use PT as well as experimental therapies such as spinal traction, a newer TENS and red light therapy and tesla coil therapy and a wonderful device called a "molecular enhancer" to get a handle on it all.
i told the various medicos i've had [surgeons] that i have a low tolerance to pain, and thankfully they got me adequate pain relief. i had a diagnostic epidural for my back [fluoroscope-guided needle] and they put me out for that, i knew another fellow who told me that was an excruciating procedure and i was fortunate to be able to persuade the docs to put me under. at the dentist's office for decades i've had to use gas to get through it. i once reached around [when the dentist saw a patient in the next berth] and cranked up the gas to the point where i had an OOBE.

I had back labour with my post-term son who was extracted by forceps and then a vacuum.
Back labour is considered the most painful thing a person can have other than kidney stones.
Uh, I had hydronephrosis (total blockage of my kidney like a water balloon).
The birth hurt more.

Still, if they'd asked me at the time to rate my labour pain on that chart, I would have said 7.
I wasn't crying although my eyes did look like 10.
In my mind I wouldn't be allowed to be a 10 unless I'd cried two steps before.
I'm literal like that. lol

Thank you for your interest in this! Some examples of our questions are: How easy is it for you to rate your pain on a 1-10 scale?
Are you able to easily identify where the pain is?
Can you describe pain with clear words? For example, is it easy for you to identify if pain is sharp or dull?
Are you extremely sensitive or extremely unresponsive to pain?
Does one type of injury/pain hurt way worse than others?

I'll rate it higher if I want the doctor to do something about it. Lower than 5 if I just want to complain. I've been living with chronic pain for decades so it's hard for me to judge it objectively.