Pain is weird in Autism sometimes. Experiencing, describing, measuring it.

Chatting this morning with another Autistic person whose healthcare experience was less than awesome, I thought I’d take time to write a bit about pain.

One of the things that makes healthcare complex for Autistic people is that there is a difference in our experience and expression of pain. This is noticeable to healthcare providers (those who know what to look for and don’t pre-judge, which is admittedly a small pool).

But why?  Why is our pain weird?

Sometimes, our actual experience of pain is either reduced or heightened in comparison with what “most people” would expect.  For many, the superficial pain from splinters, paper cuts, or removing bandaids is quite overwhelming, whereas the deep, dull pain of internal issues is lessened in comparison.  This is because there are many more nerve endings at the surface, and several different types of them, whereas the internal nerve endings are less varied, slower, and there are fewer of them.

Given that recent studies show more neural connections in the Autistic brain – particularly in sensory processing areas – and less inhibition of those connections, it makes a lot of sense that Autistic people may have a more intense experience of superficial pain than of deep pain.   Internal pain, involving fewer receptors,  would therefore be read by the body as ‘less severe’.ubiquitin

However, the experience of pain is a very individual thing for all people, and even more so for those with non-typical sensory experiences.  A chronically intense experience of sensory input may in fact not follow the expected ‘dull, heavy’ description of internal pain, and result in deep ‘visceral’ pain being felt acutely and sharply, meaning the description doesn’t sound ‘right’ to healthcare professionals expecting a certain presentation with different types of pain.

Autistic people have frequently described to me times when they “should” have been in agony, but experienced less pain subjectively than would be expected, or whose description of pain has been unusual for the cause or site of the pain. This has often resulted in not being believed.

  • A friend had bilateral DVTs (clots in the leg), and a pulmonary embolism (a bit of clot that had broken off and lodged in the lung).  These are usually considered excruciating, but when experienced over the top of her ‘normal’ pain, it wasn’t *that* much different.  She was sent home from hospital twice without treatment before someone decided to do ultrasounds.
  • The friend I spoke to this morning told me they’d recently had a bad infection, causing significant pain and requiring IV antibiotics, but after one dose she was sent home because they didn’t think she was ‘that sick’.  The doctor rang her the next day in something of a panic, told her to come back in, and said, “You hid your pain from me!” – as if it was her fault he didn’t believe her when she said she was in pain.  She declined his offer.
  • I only knew I had meningitis because I could feel my headache shooting down my spine with each step or jolt.  I only knew this was meningitis because I had assessment and pathophysiology education.  From other people’s descriptions of meningitis pain, I wouldn’t have thought it was bad enough.
  • My husband was told he only had “bruising and swelling” in his arms after a motorbike accident.  He was doing music practice the next morning, before he went in for an ultrasound.  The doctor cornered him before he left to talk about his two broken arms; one elbow bone, and one wrist.
    D: “Oh.  Can I still play my gig this weekend?”
    Dr: “No.  Oh wait, what do you play?”
    D: “Drums.”

I also have a personal hypothesis about why we don’t seem to experience pain in the same way as neurotypical people.  It’s this:
From a very young age, children who “fuss” over superficial injuries are ridiculed, coaxed and scolded into showing less reaction.  So when you’ve been hurt – because so much does when your senses are heightened – you learn over time to suppress it, try to ignore it, because you don’t want to be a ‘wuss’.  If a cut finger feels that bad, this dull pain in my lower abdomen couldn’t be that important, right?

At times this may be associated with the experience of acute pain due to a specific injury or illness being overlaid onto chronic pain, meaning that the difference between the two kinds of pain is less than it would be if there had been no pain to start with.

Another reason we might appear different is the amount of effort required to prevent a meltdown from the sensory overload of severe pain.  This was the main driver behind the treatment of ‘C’ in the blog post from Day 9 of the Autism Acceptance Month series.  Meltdowns are uncontrolled, and can be painful even if you don’t have an urgent  condition requiring medical attention.  You’re going to want to keep it together if you possibly can.  This will possibly involve less talking, avoiding touch, avoiding eye contact, and if possible, moving to a quiet, darkened room.  If you feel it would be helpful, you could print off this card and take it with you.

meltdown card


When you’re in pain, the most important thing to do is explain it to the people who will know how to stop it.

That Pain Rating thing.

Nurses are very persistent about getting a number rating for pain.  Again and again I hear that being asked for a pain score results in a great deal of ‘overthinking’.  “How can you compare pains?  How would I know if this is the worst pain ever?  Maybe it could get worse.”

Let me give you a way of working the numbers out.

First, they’re asking about your own pain as a subjective measurement.  You’re wanting to consider a general concept of “how bad is this for me right now”. It’s a snapshot at that moment, and you are not trying to compare types of pain.

When working it out for yourself, 0 is no pain whatsoever, 10 is worse than you have ever felt before. You’re not trying to decide whether you might feel worse next week.
Just – have I ever felt this much pain before?

If it’s not a 0 or a 10, the next question is, “in comparison to what I’ve felt before, is this pain mild, moderate or severe?”
You could classify this as:
– mild is “I can still do stuff, it just hurts when I do”
– moderate is “this is really interfering with stuff I want to be able to do”
– severe is “this is probably the only thing I can focus on right now”

And then, to get a number out of that, you think, “So if this is moderate (for example), is it closer to mild, closer to severe, or neither – right in the middle of moderate?”

So then you have:
mild = 1 (present, but almost nothing), 2, 3 (bordering on affecting my daily living);
moderate = 4 (interfering with stuff, but not unbearable), 5, 6 (really starting to get so I can’t do much);
severe = 7 (could probably force myself to do stuff if it was really urgent), 8, 9 (it’s not that I haven’t ever been in more pain, but it’d be close).

If you ever have to go into ED or hospital with pain, it’s worth taking a bit of time to think about this before you’re faced with the questions barrage, and this will possibly help you to get a couple of stock phrases ready to use so you can access them quickly. “I had tooth abscess recently that went into the jaw; if that was an 8, this is probably a 7.”  “Childbirth was a 7, this is more like a 9.”

The number doesn’t give a lot of information, though.  The health care provider needs to know more about your pain than how bad it is.

PQRST Pain Assessment.

This gives a general idea of the pattern of your pain, which can give a lot of information to the healthcare provider and help them to get to the cause of your pain.

P: Provoking and palliating factors.  What makes it worse, and what makes it better?

Q: Quality.  How would you *describe* your pain.  This information can really help the healthcare professional to understand what’s going on.  Different types and causes of pain have different descriptors associated with them.

words to describe pain

R: Radiation.  Does the pain move?  Does it shoot along a nerve, or has it shifted since it began (e.g. started in your back and moved to your side, etc)

S: Severity – this is where you put the pain rating you worked out earlier.  If you’re still unsure, just decide whether it’s mild, pretty bad, or really bad.

T: Timing.  Is the pain there all the time?  Only when you move?  Worse when you wake up or when you’ve been awake for some time?  Has it improved or gotten worse since you first felt it.?

Armed with this quick self-assessment, you should be able to explain things to the health care professional in language they understand.


4 thoughts on “Pain is weird in Autism sometimes. Experiencing, describing, measuring it.

  1. This is the most amazing article i have come across. I have been diagnosed over the years with serious health issues i did not fully understand, and the biggest issue i have with finding medical care or help for serious issues at the emergency department is communicating. By the time i decide i need to go to the hospital it’s beyond bad, i can barely function and this list of things here, so helpful and appropriate for what i need.. Thank you for writing this.

  2. I agree that this is pretty incredible to read and puts a lot of my experiences into perspective
    1) Broke my wrist at school – ached a bit but still pitched a game of baseball. Ended up with a cast after my mum made me go to the Dr
    2) hit by a car and crushed 3 vertebrae – was pretty achy and couldn’t sleep lying down for more than a hour because I fidgetted. Took some panadol.
    3) Wife put cold hands on my skin and I scream in pain.
    4) Meltdown feels like my soul is on fire
    describing pain in 1-10 ratings has always baffled me and made no sense. Also people alternatively called me a wuss (for #3) or a superman (for #2) when neither are the case (well maybe wuss a bit 😉

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