I reply to Matty Angel on ‘Questioning Pain: Autism, and the experience and expression of pain’

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Matty Angel (who created the painting above) responded to Questioning Pain: Autism, and the experience and expression of pain. Here is a sample:

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 replied to Matty:

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?

 

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My response to: ‘Questioning Pain: Autism, and the experience and expression of pain’

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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.

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Simon van Rysewyk thanks the Facial Emotion Expression Lab (FEELab) in Portugal for its support!

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Many thanks to the Facial Expression of Emotion Lab  (FEELab) at the University of Fernando Pessoa in Porto, Portugal for promoting my #SciFund project! Special thanks to Dr. Erico Castro and Prof. Armindo Freitas Magalhaes.

FEELab here.


Prof. Freitas Magalhaes

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

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I sent the excellent author of the autism blog ‘Autism and Oughtisms’ my #SciFund blog post about autism and pain sensitivity. She has responded with the following:

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.

The rest of the article is here.

I’ll reply to this post with a comment later this week.

Thanks for dropping by!

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Is social pain the same pain as a broken limb or a headache?

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Many of us would agree that personal experiences of exclusion, rejection, or loss of relationships are painful. Many of us would deny that these experiences involve physical injury. However, is social pain the same pain as a broken limb or a headache? At the level of the brain, experimental evidence shows that experiences of social and physical pain depend on some of the same neurobiological and neural substrates.

This does not mean social pain and physical pain experiences are interchangeable. Based on personal experience, we differentiate between the pain of a headache and that of social exclusion. Studies have shown differences between these two types of pain. For example, while individuals can relive the pain of social rejection or betrayal, they are less capable of reliving the pain of physical assault or injury [1]. Still, since both types of pain share neurobiological and neural substrates suggests that there are similarities between them.

Why have human beings evolved this mechanism since it leads to great suffering? Although social pain feels painful, these feelings are adaptive. The pain of a burnt funger motivates us to withdraw it from the fire and teaches us to avoid the doing it again. Social pain is the same: the pain of social rejection motivates us to avoid engaging in behaviors that may elicit social exclusion or rejection. Sensitivity to social pain is likely adaptive for promoting social relationships. People who lack sensitivity to social pain often have personality disorders (e.g., paranoid, schizoid) or conditions (e.g., autism) associated with abnormal social functioning and a preference for isolation [2]. Over our long evolutionary history, social pain likely aided us to avoid social exclusion. It thereby increased interpersonal contact and our involvement in the social group, and promoted our chances of survival. While social pain is awful, it is an adaptation that promotes relationships with others and survival.

[1] Chen, Z., Williams, K. D., Fitness, J., & Newton, N. (2008). When hurt will not heal: Exploring the capacity to relive social and physical pain. Psychological Science, 19, 789–795.

[2] Wirth, J. H., Lynam, D. R., & Williams, K. D. (2010). When social pain is not automatic: Personality disorder traits buffer ostracism’s immediate negative impact. Journal of Research in Personality, 44, 397–401.

 

 

 

 

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#SciFund Round II is over! Bring on Round III!

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Well, the month of May has just passed, and that means – like all good things – the conclusion of Round II of #SciFund Challenge.

Look at the fruits of Round II:

3_total.png (480×480)

An amazing effort! I thoroughly enjoyed the experience.

I wish to thank my supporters:

Ching-Yi Huang, Tony van Rysewyk, Ben van Rysewyk, Karen Muntz, Lindy Gullett, Kate Reilly, Adrian Bye, Brita Hansen, Shu-Juan Huang, Bernadette van Rysewyk, Genevieve van Rysewyk, Naill Hamilton, AND

Jai Ranganthan and Jarrett Byrnes of #SciFund Challenge! 

This blog will be updated once weekly, and shared on facebook and twitter. I will now organize rewards for my beloved supporters. Stay tuned!

Bring on Round III, 2013! It’s going to be explosive.

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Katrina Toy’s excellent questions, take II – I respond!

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Katrina asked: 

(1) how does your research help a child who doesn’t perceve pain ?

(2) I understand that the idea of the it machines is for good but we have all seen how humans use good things for bad. That’s my fear.

My response to (1):

Even though my project hypotheses do not target autism, and I am not recruiting autistic people for my experiments, the topic of this project is highly relevant to autism and pain (and to other special patient populations such as dementia, verbal disorders, etc.). Knowing what facial actions reliably communicate pain in normal patients can serve as a baseline to assess pain in special populations. We can infer how much pain deviates (or not) in such populations from the ‘normal’ pain face, and how intense their experience of pain likely is. This is a valuable contribution to pain assessment in patients with limited or no language ability. A related issue is tackling medical attitudes about reduced pain sensitivity in special populations. I would like to investigate these questions in future projects. But, a baseline ‘pain face’ needs to be established first (my current project).

Addressing the case of the autistic child who has difficulty in communicating pain is really complex, and likely requires a comprehensive intervention targeting communication and social interaction generally. In addition, a majority of parents of children with autism and/or cognitive impairment believe their children experience pain differently than children without autism and/or cognitive impairment. Parents of children with autism tend to perceive decreased pain sensitivity and increased pain tolerance in their children compared with other non-autistic children. Nonetheless, this problem can be addressed if a caregiver or other can model pain facial actions (along with other pain behaviors), and the child can link such displays either to the personal experience of pain or to evidence of pain. That’s a big if, and may be only partially successful: An autistic child may be unable to get beyond the following cognitive routine: ‘I have blood on my thumb. I should make a ‘pain’ face. Then, mum will help’. It isn’t clear in this case whether the child in fact feels pain.

My response to (2):

Sure, health care professionals are human. They may make mistakes in their job (but mostly get it right). They may abuse patient trust (but only rarely; most are extremely sincere). I would like to see reliable data on reported abuses by health care professionals. What factors are involved? Does IT play a role? Why, or why not? Do patients abuse the doctor-patient relationship more than physicians? We need data, Katrina! :) Medicine is difficult to practice because it is saturated with complex human interactions. And uncertainty characterizes many interactions between human beings (e.g., what is he thinking? is she angry with me? is he really in pain? is she deceiving me?). IT should be an option in cases where vital clinical judgments are uncertain, and/or human medical expertise has been exhausted, or in deadlock. The irony is that even the use of IT by health care professionals relies on human choice, is largely a matter of personal judgment, and ultimately uncertain. But, human beings are always at the helm of patient care and safety. This won’t change (despite fears to the contrary). Mistakes happen and abuses occur. This won’t change, either. I think medical science is ethically obliged to consider IT where its use will likely improve patient care and clinical judgment. That is: where IT can reduce uncertainty (buyer beware: elimination of uncertainty is humanly impossible). That’s how I see it. I hope you appreciate my honesty!

:)

 

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Katrina Toy’s excellent questions – I respond!

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Katrina Toy (Melbourne, Australia) posted the folllowing 2 comments on my project page at rockethub:

(1) I have a question for you. What about people who have sensory issues like kids with autism? Eg. I have 3 kids with autism and they all have issues with pain assessment. It’s not just that they don’t/can’t express pain verbally it is that they Are often not aware they are in pain. Or the other extreme is true they over react to sensations and feel things as painful That to the average of us is not painful. Eg cars the noise of cars going past. I can tell you though that my youngest is in pain when traffic noise is loud.

(2) Also these intelligent pain machines? I believe pain is individual and both physical and psychological. No two people feel the same way about pain how can we measure Something that is personal. I would hate to see a machine come along that measures pain abiterily and say using child bith as an example a woman in pain an the nurse says oh the machine says your pain is not that bad you’ll be alright. When we are all complex there is so much more to pain than science. There is past experiences, fear, emotions. All involved in pain assessment I don’t believe That that assessment should be taken away from humans. I know we are fallible but we are all we have. A machine made by fallible people can not be greater than it’s creator.

My response to (1):

Imagine you are God in DNA heaven. You want your creatures to survive long enough to pass on their genes. So, you need to lower the odds that they will sustain bodily injury. Pain is the simplest and cheapest mechanism to achieve this goal. Pain is a message from our genes. It says, ‘STOP that you stupid organism, you are ruining my chances!’ Now, the only way to ensure that the organism will obey that message is to wire up the perception of pain (pain assessment) into the preferences or desires of each organism. This means that perceiving pain in oneself causes an immediate and compelling aversion. The organism wants to get on with its life; it wants the pain to stop. It obeys.

But – in autism, this ESSENTIAL connection between pain perception and desire is compromised. Autistic children have difficulty connecting the experience of pain to their desire to get rid of it. They have difficulty putting their foot on the brakes. As a result, they tend to be overloaded by pain or other sensory experiences. A child cannot communicate pain to caregivers if he cannot connect it with his desires or motivations. This point is general: I think this is the core problem in autism. Behaviors in autistic children such as looking at a person’s mouth and not the eyes while talking, or not communicating pain, are symptomatic of this core deficit. The GOOD NEWS is that autistic children can learn – pain is learnt. There are many success stories. If you have time, look at the following:

http://ccrc.cherokee.org/Portals/7/Understanding%20the%20Nature%20of%20Self-Regulation.pdf

Greenspan, SI, Shanker, SG. (2004). The First Idea: How Symbols, Language, and Intelligence Evolved from our Primate Ancestors to Modern Humans. Da Capo Press.

http://www.mehri.ca/

My response to (2):

Katrina wrote: ‘I believe pain is individual and both physical and psychological. No two people feel the same way about pain how can we measure, something that is personal.’ Of course, I totally support this. The use of IT in pain assessment does not aim to displace the doctor-patient relationship anymore than Mozart or Rembrandt are in competition with molecular genetics. However, human beings are quite limited in their ability to detect changes in the intensity of pain facial actions over the relatively brief time frames involved in pain facial expression (movement dynamics). Currently, the complexity of pain facial expression is available only to human beings with skill in decoding pain faces. But, the reliability of human observation – even in trained health care professionals – is far from perfect. This is where IT can enhance pain assessment. IT pain assessment can provide precise assessment of changes in pain actions over time, and can discriminate genuine and controlled facial displays (useful if a patient is faking pain). Again, the use of IT is designed to supplement human pain assessment, not displace it.

—

Many thanks!

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