Questioning Pain: Autism, and the experience and expression of pain

A recent comment on the “About” section of my blog, prompted me to investigate the question of pain and autism. I was already familiar with the notion that autistic people frequently report higher thresholds of pain, and are less expressive of their pain (my son strongly appears to be someone who falls in both camps). But could it be true – as the comment suggested by reference to a 2004 study – that autistic children do experience just as much if not more pain than their non-autistic peers, but the parents are failing to pick up on it? The study’s researchers utilized a supposedly objective measure of pain – facial expressions – to reach their conclusion.

I had some issues and concerns with the study straight away (besides the small sample size): For starters, is a facial expression of pain universal in a way relevant to autistic people?

The experience of pain and its intensity is apparently individual and cultural (not universal), but what about the expression of that pain? If it is a universal expression, does that universality cross the issues that are present in autism? By which I mean, the expression of pain may be universal across all cultures and ages (ie on broad measures), but is it universal across all minds in their great variance, particularly when that mind variance explicitly includes issues around the identification and presentation of facial expressions. Does is not perhaps beg the question, to start off by saying that facial expressions of pain are objective and universal, and then use that measure to establish that those who explicitly struggle with facial expressions, experience pain in the same way as everyone else.

Surely (I thought at the outset) pain is always going to be expressed in the same way; pain seems so fundamental, surely it is not a learned expression. The newborn baby has not “learned” how to screw up their face in pain. But one of the recognizable features of autism – according to the DSM-IV-TR and the proposed DSM-5 – are impairment or even total lack of facial expression. The question is then not “do babies all show pain in the same way” but rather “do autistic babies show pain in the exact same way as non-autistic babies.” I tend to think the answer would be yes, but still, considering the challenges of autism it is surely an important question to ask. The answer would be hard to find without early video footage of children who are later diagnosed as autistic. The issue is further complicated by the fact that there are some forms of autism which appear to be late-onset varieties; whereby even a baby which exhibits pain in a universal, unlearned way, may change those expressions as autism becomes more pronounced.

Let’s presume that all babies – autistic ones included – express pain in the same way (it’s easier to progress this way and I think it’s the stronger assumption). If this is so (and if it isn’t) you still have a factor you must control for in any study using facial expressions as an objective measure of emotion or sensitivity: The impact of the fact that autistic people do struggle to some extent, with identifying and understanding others facial expressions, and finding the correct response to those facial expressions. Moreover, that it is incredibly common for parents of autistic children to intentionally and actively teach their children (not always successfully) to recognise and respond appropriately to emotion, and not just to others emotions either; also understanding and presenting their own emotions in a form that neurotypcial people can access and understand. Teaching – or a child who has self-taught – to respond in a particular way, is likely to have a “distorted” presentation or expression of emotions (please understand that I do not mean a lack of actual emotion, or a lack of care for others emotions, I am solely talking about the outward expression of them).

So the way in which the pain is expressed may indeed be intentionally amplified because they child has been taught to actively identify and respond in the expected way to particular events and others cues. Did the person performing the procedure or the parent give a verbal cue that the child should expect pain to begin? Would it not have been arguably unethical for them not to appropriately warn the child? Was this major factor controlled for, if so, how..?

There is a deeper question here too about the reasons that an autistic person might be “experiencing” the same levels of pain but not showing it (besides the question of learned emotion expression): If an autistic person experiences a bodily sensation (say, pain) but their brain struggles to identify and then express that experience, the sensation (the pain) is still of course there, but is less likely to actually impact on the felt reality of the autistic individual.

It is theorised by some that this is why autistic adults very frequently share stories about having unusually high – dangerously high – thresholds to pain: Because it takes them longer to register and recognise the pain, which is not to say that the pain isn’t there, but that it’s been perceived and reacted to differently. I say this is “dangerous” because of the fact that pain is functional; it tells us that something is wrong and to seek help. This makes autistic people more vulnerable in the health system, and requires more proactive measures to make sure they get the same care and attention that the rest of the population otherwise seeks out.

This raises another concern I had with the originally cited study: Why were autistic children the sole focus? Or allow me to expand more relevantly on that point: Why were the experiences and opinions of autistic adults – who can verbally describe what is going on as well as have their faces observed – not taken into account of the question of whether pain experience was the same for autistic as for non-autistic individuals? The researchers recognise the problem with getting verbal accounts of pain experience from verbally challenged children, so why wouldn’t it make sense to also try to overcome this issue by seeking out autistic individuals who are verbal (which could have included autistic children, not just adults)?

I labour this point because in researching the issue of pain and autism, I have come across endless examples of autistic adults and teenagers talking about their high pain thresholds and that they find themselves much less likely (partly as a result) to exhibit pain on their faces either. I also found examples of unusual and severe pain reactions to what is experienced by most as harmless sensory stimuli.

I think that is a vital consideration if one is attempting to draw conclusions about the actual pain levels experienced as caused by a same medical procedure, by autistic versus non-autistic individuals. Pain caused by lights, sounds, mere touch of the skin, etc. The variance found in observed pain levels as measured by facial expression, may be picking up on independent factors, rather than proving the same pain levels to a fixed stimulus, of autistic individuals.

All of this does not mean that autistic children (or adults) don’t feel pain the same way and intensity as everyone else (though frankly the reports from autistic adults have got to hold some weight here!) But what it does mean is that I would have serious concerns about using facial expressions of pain, as a definitive objective measure of pain, in a population marked as having challenges in this very area. I must say that I am not impressed either than the conclusion of the study was not to rely on parental reports of children’s pain.

The fact is that many autism parents – like myself – frequently remind health professionals not to solely rely on perceived and self-reported pain when trying to help our children. I always tell my son’s doctors after they ask if his ear hurts or his throat is sore, to please check it out for themselves too (have an actual look, don’t dismiss a possible symptom on verbal answer alone). Not because my son’s opinions and experiences don’t matter – of course they do – but because experience as his mother has taught me that he frequently won’t notice he has hurt himself or realise he is extremely sick.

For example, he had a supposedly painful and large veruca on his foot that he hadn’t noticed at all until my husband accidentally found it one night. My son has told me he feels good mere moments before and between bouts of vomiting. He doesn’t know where or how he got bruises and cuts. But the tiniest bit of water on his face used to cause him immense and very obvious “pain.”

As parents, we learn – and are always learning – about our children’s under and over sensitivities and what causes them pain. Our input and knowledge about our children are absolutely vital to the health of our children. We are not substitutes for measuring our children’s pain levels, but we are essential parts of an accurate measurement. I am not convinced that facial expressions of pain, established in reference to people who were not autistic, can replace or outweigh the experience and knowledge of parents of autistic children. The way forward to establish a relevant measure would be to at least start by talking to verbal autistics and measure their expressions of pain against their own reports of actual pain, rather than  presupposing that a pained face model built around non-autistic facial expressions, is an accurate tool with which to draw wider conclusions on the experiences of pain for autistic children.

But what do I know.

I’m just a parent.

Which prompts me to end on this note: When it comes to the content of this post, I really am “just a parent;” I have no scientific training. I did my best to work my way through the literature and grasp the concepts involved, but there’s a fair chance I’ve goofed up somewhere along the way. Sometimes my posts are efforts to simply make sense of something, and I rely on readers to point out errors or issues, so I can learn from them. This is one of those posts.

I also want to say that though I may come off quite annoyed about what I see to be the somewhat superficiality of the study I am primarily addressing in this post, I am not at all annoyed at the person who bought it to my attention; in fact I am grateful they presented the opportunity and impetus for me to look into and learn more about the issue. Thank you Simon.

***

Some of the more useful online resources I used in researching this post:

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13 Responses to Questioning Pain: Autism, and the experience and expression of pain

  1. Pretty important stuff. You have made it your business to be “just a parent” who informs others of your observations. This one concerns me, too.

  2. Hi there! EXcellent post! I’ll reply in detail to it by the end of this week. Thanks ~Simon

  3. Matty Angel says:

    HELLO =)! I couldn’t understand most your post and it was to much to read but I read a little and will post some.

    I feel pain, I even cry if I feel very sad also, but not so often. It just happens when it happens I guess. But sometimes when I am in pain, I am not sure why I am in pain if its not visible to me. I usually try to explain that I feel sore but am not sure why. This has been bad because I have found blisters on my feet or have had rashes and not noticed at all. I also have trouble knowing when I am very hungry. I only eat once a day unless someone reminds me or helps me to eat more. My facial expressions do not show I am in pain, so I have to tell people if I am. Like yesterday I burned my finger and I had to tell someone. ALSO I never ever shout or yell. When I was little a nail went through my big toe and I cried, I didn’t shout and I had a hard time getting someone to help with that. IT HURT! Because I didn’t yell out that a nail went through my foot. But I did tell them it hurt as best I could when younger and I expressed that in a more tearful way.

    I think pain is measured in three things when I thinkings about it

    Facial expressions
    Vocal expressions
    Body expressions

    People with Autism and maybe other disabilities too have trouble with all three of those and also trouble reading all three of those ?? Like when I can’t really tell if anyone is grumpy or not unless I ask them directly. (My careworkers always tell me no but I always ask just in case)

    I am lucky, I can express pain vocally on a good day, but on a bad day like during the earthquake, I was not able to say I felt sore and shaky. BUT I was able to write that down and show with a flash card.

    SO MAYBE, we need to rethink how pain is measured and add Written or Sign language gestures and actions in there to ?? Then maybe we may find lots more people with autism show pain than people think ???!? If you can point to a card to show you are hurting, it may show more than facial, vocal and body expressions for people with autism.

    ALSO I HAVE EMPATHY TO, just its not always clear. I love my friends. I feel sad if my friends tell me they are sad. I always try to make people happy when they are. I always ask people when they are with me why they are laughing to understand why they are if I don’t understand, because I want to enjoy what is making them happy to. When my friend told me they passed their exam the other day I was very happy they did! I even jumped up and down happy for them! Just cause I can’t tell if someone is upset or happy or grumpy, doesn’t mean that I don’t have empathy

    • Hi Matty,
      Nice to meet you! I hope you are well.
      I read your narrative with great interest. I think you describe very well what typically happens in people with autism during pain (my cousin, who has asperger’s, is just the same).
      The connection you made about pain and hunger is REALLY important.
      Rather than seeing pain only as a sensation like pressure, the connection between pain and hunger in autism reminds us of the role of pain in self-preservation (i.e., survival and well-being).
      Compare pain to vision or audition. The function of vision and audition is to represent the world. But, they do not have the (motivational) ‘feel’ of a pain. Pain is more like hunger, thirst, or temperature. As with thirst or cold, pain signals coming from the body motivate the person in pain to get rid of it (‘correct’ it). When hungry, we eat. When thirsty, we drink. When cold, we put on a top. When in pain, we seek to get rid of it. These links are compromised in autism. What do you think?
      Matty, you wrote: ‘I also have trouble knowing when I am very hungry.’ Have you had, or continue to have, the same experience with thirst and temperature?
      Many thanks!
      Simon

      • Matty Angel says:

        Your words were a bit hard to read all together.

        I am not sure about thirst, but I drink a lot, though I drink a lot of bad fizzy stuff I should not drink : ) I like the bubbles.

        For temperature : ) I feel hot and cold, though I am not always good at knowing what clothes of mine make me warmer and what makes me colder : ) I do sometimes feel cold when others say it is very warm though.

        I don’t think the links are a compromised, just complicated. I often feel that something is wrong but not always realize its because I am hungry : ) I hope that makes sense. There is a link, but not a realization of that link.

  4. Matty Angel says:

    I just want to add though that I am not very smart with any of this stuff and those measurements of pain is just what I think when I am thinking about it, not from any book or anything like that :)! I hope it reads ok.

  5. MJ says:

    Hmm, interesting post. I have always thought that the reduced pain sensitivity was a biological thing, as in children with autism have something going on that effectively blocks the sensation of pain, but I guess you could also explain it as processing or perception issue.

    I know that when my twin daughters were younger they didn’t seem to feel pain. Or at least it didn’t stop them or slow them down in any way. But that behavior only started after they regressed at about age 1 and has only recently changed. Before age 1 they certainly felt and processed pain normally (they enjoyed pulling each other’s hair and they certainly felt that).

    Another possible problem with the study you are talking about is that sticking a needle into a kids arm is going to trigger more than just pain. There is an entire sensory side to it that might bother a child with autism more than the actual pain would.

  6. Hi everybody,
    My responses to your excellent post below:

    ‘By which I mean, the expression of pain may be universal across all cultures and ages (ie on broad measures)…’

    Me: What is your definition of ‘broad measures’? We know that the acute pain face represents pain intensity, and emotional and cognitive aspects of pain. For example, facial actions of the eyes represent the sensory aspects of pain, whereas facial actions of the eyebrows and upper lip represent the emotional aspects of pain [3]. For more, see [1, 2]. The chronic pain face has not been described.

    I am not clear what ‘mind variance’ means. Pain is personal. When my daughter manifests pain, is it her or her mind that is distressed? Can a mind be in pain? Do health care professionals treat people or minds? Do they say: ‘His mind must be in terrible agony’? Why not?

    ‘Surely (I thought at the outset) pain is always going to be expressed in the same way; pain seems so fundamental, surely it is not a learned expression. The newborn baby has not “learned” how to screw up their face in pain.’

    Me: There are subtle empirical differences between normal neonatal and adult pain through facial expression [1].

    ‘…but rather “do autistic babies show pain in the exact same way as non-autistic babies.” ‘

    Me: a genetic marker of autism may make this possible in the future.

    ‘There is a deeper question here too about the reasons that an autistic person might be “experiencing” the same levels of pain but not showing it (besides the question of learned emotion expression): If an autistic person experiences a bodily sensation (say, pain) but their brain struggles to identify and then express that experience, the sensation (the pain) is still of course there, but is less likely to actually impact on the felt reality of the autistic individual.’

    Me: Yes, I think you have identified something vitally important here [4]. I hope to make this my postdoc project, and more. We know that the sensation of pain can dissociate from its emotional and motivational aspects in certain cases (e.g., pain asymbolia, frontal lobotomy patients). Matty reported this above, and also with regard to hunger (like pain, a ‘homeostatic emotion’). I imagine Matty may have the same experience with thirst. People with autism do not report pain to others because the link between the sensation of pain and the emotional and motivational aspects of the pain experience are relatively compromised. Pain is fundamentaly based on the need to ‘tell’ someone else that it exists. This is precisely what people with autism find difficult or impossible to do: the motivation or drive to avoid/get rid of it.

    ‘The way forward to establish a relevant measure would be to at least start by talking to verbal autistics and measure their expressions of pain against their own reports of actual pain, rather than presupposing that a pained face model built around non-autistic facial expressions, is an accurate tool with which to draw wider conclusions on the experiences of pain for autistic children.’

    Me: sounds good. Why don’t we co-author an online survey on this topic? We could have hundreds of respondents. Let me know. It seems to me that you are over-reading Nader et al. (2004): pain facial expression is not used by these authors as the ‘definitive’ (absolute?) measure of normal acute pain in humans. Scientists are generally highly circumspect about using such language. Facial expression is one of the best objective measures that we have at the current time of pain. Research has to start somewhere. What do you think?

    Have to go – I am out of time! Thanks.

    References
    [1] Craig, K., Prkachin, K.M., & Grunau, R.V.E. (2011). The facial expression of pain. In Turk, D.C., & Melzack, R. (Eds.): Handbook of Pain Assessment (3rd Ed.). New York, Guilford Press, pp. 117-134.
    [2] Williams, A.C. de C. (2002). Facial expression of pain: an evolutionary account. Behavioral and Brain Sciences, 25, 439-488.
    [3] Kunz, M., Lautenbacher, S., LeBlanc, N., & Rainville, P. (2011). Are both the sensory and the affective dimensions of pain encoded in the face? Pain, 153/2, 350-358.
    [4] Greenspan, S.I., Shanker, S.G. (2004). The First idea: How Symbols, Language, and Inteligence Evolved From Our Primate Ancestors To Modern Humans. Da Capo Press.

    • Thanks for your thoughtful response Simon. When I get the chance I look forward to reading further through the references you’ve kindly provided, and I’ll reply to your questions and suggestions. Unfortunately – like you – I’m under a lot of time pressure right now; my husband is away for a few days on a conference so I’m in solo-mother mode for a bit, and it’s predictably full-on.

      Again, I really do appreciate you bringing this topic up, and reading and responding to my thoughts. It’s all very interesting, and of course, important.

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