Welcome back to the Healing Pain Podcast with Bethany Donaghy, MSc, BSc And Michelle Failla, PhD
The relationship between autism and pain sensitivity is something that we have not covered in this show, mainly because it’s also a relatively new area in pain literature. How does pain management look like in cases where communication might be a challenge? Bethany Donaghy, MSc, BSc And Michelle Failla, PhD join Dr. Joe Tatta in this episode to explain. Dr. Failla is Research Assistant Professor in the College of Nursing at The Ohio State University whose research focuses on understanding the role of social communication in pain responses and management. Bethany is an autistic PhD student at Liverpool John Moores University, UK. Her current PhD project explores pain in autistic children and young people. Tune in and listen to the insights of two trailblazers in this emerging field.
Here are some links for two papers and a review on pain in autism:
- Increased pain sensitivity and pain-related anxiety in individuals with autism – PubMed (gov)
- Initially intact neural responses to pain in autism are diminished during sustained pain – PubMed (gov)
- Acute pain experience in individuals with autism spectrum disorders: a review – PubMed (gov)
Michelle Failla’s website:
If you have a need in the future, Michelle’s other line of work is in pain in Alzheimer’s Disease, and she works with a number of people trying to understand pain perception and differences in dementia. If that’s ever of interest to you and your podcast, reach out and Michelle can connect you with some great people in that work.
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Autism And Pain Sensitivity: Paying Attention To Pain In Autism With Bethany Donaghy, MSc, BSc And Michelle Failla, PhD
In this episode, we’re discussing pain processing in autism and ways to improve pain management for people where pain communication could potentially impact care. My guests are Bethany Donaghy and Michelle Failla. Bethany is an autistic PhD student at the Liverpool John Moores University in the United Kingdom, studying under the Pro Vice Chancellor Scholarship Award. Her current PhD project and work explore pain in autistic children. Bethany has completed both a Bachelor’s in Applied Psychology and a Master’s in Brain and Behavior at Liverpool John Moores University.
Dr. Michelle Failla is a Research Assistant Professor in the College of Nursing at the Ohio State University. Her research focuses on understanding the role of social communication in pain responses and pain management. She’s particularly interested in studying pain populations with differences in social communication across the lifespan from autism to Alzheimer’s disease.
We take care to answer the questions. Why do people think autistic people feel less pain? What is the history of understanding pain and autistic people? What do we know about pain and autistic children? Do autistic people process pain differently? Do autistic people express pain differently and the consequences of not adequately assessing or managing pain for autistic people?
As many of you know, one of the central aims or the mission of this show is to raise awareness around the safe and effective treatment of both acute pain and chronic pain for individuals and certain populations. Oftentimes, I do that at the end of an episode where I ask you to share this information with your colleagues, a friend, or a family member who may be impacted by the topic we’re talking about.
In this episode, I’m going to do something a little bit different. I’m going to ask you to share this episode at the beginning. The reason why is that this affects the development of many children, and we know that pain and the processing of pain happens in early life. When pain is not adequately treated or managed in early life, oftentimes it primes the brain and the nervous system to create or generate pain more easily in later life.
This is one of the essential reasons why I wanted to have Bethany and Michelle on the show to share their work and their unique perspective. Many people, including practitioners, are still unaware of this topic. I can speak for Bethany and Michelle and say they’d appreciate you sharing this episode on your favorite social media handle. Without further ado, let’s begin and let’s meet Bethany and Michelle and learn about pain processing and autism.
Thanks for having us.
It’s nice to be here.
Thanks for joining. This is an important topic that we have not covered before in the evolution of this show. We’re trying to give a little bit more attention to children and adolescents because in the literature with regard to pain, it’s still a relatively new area. A good place for us to start is to let our readers know how you became interested in the topic of pain management, where communication might be challenging for an individual.
What brought me to study and think about how we talk about pain for individuals who have different communication styles was talking to autistic adults and children who gave us their experiences on how pain is different for them, how they maybe didn’t always necessarily feel listened to in clinical encounters. It got me thinking about how most of our measures and the things we talk about with pain are so specific communication styles. Even the tools that we use to understand pain outside of, normally you walk into the doctor’s office, getting that question of, “What’s your pain on a scale of 1 to 10?” Even outside of that, for people who might have different communication styles, we’re looking at their facial expressions and body posture.
We’re trying to read them. It got me thinking about how disadvantaged often people are if they have a different style of communicating their pain and how that’s going to impact and compound the situation of, “When you’re in severe pain, you’re stressed out. You’re coming in with this immediate need.” Being able to accurately and quickly assess that is so important both for the individual and the clinician. Talking to people who are going through that and thinking about my own experiences of how I want to communicate pain quickly. Thinking about how that would be different for many different populations depending on how they communicate.
To echo what Michelle said about this communication style and things, there is such a massive health inequality for autistic people. It’s something that needs to be addressed directly. To be part of that conversation and help turn the tides with that to make healthcare as accessible and inclusive as possible. Even with lived experience, I’m an autistic person myself, and I know how difficult it can be to have my experiences of pain understood by others. Even on the flip side, how I understand other people’s pain.
I grew up in a household where my mom had chronic pain. There’d often be times when my mom would be expressing the typical heightened pain expression like crying or she’d be rolling around because she was physically in that much pain. It was hard for me to even recognize and process that she was in pain. I suppose it’s an understanding of autistic people’s experiences themselves and how autistic people perhaps process such pain in others.
I love that the two of you are approaching it from this multidisciplinary approach where you’re both researchers. Michelle, you’ve finished your PhD. Bethany, you’re in the middle of your PhD, but you’re also bringing the lived experience, which is important for people because when we’re dealing with conditions where communication can be challenging. That sounds like it’s a big part of where all this research is building and heading. “If we can communicate effectively with someone, how do we change? What do we have to do?” Can you give us the backstory of how we have addressed pain in the autism population in the past before we talk about your research and discoveries?
You can look back at even the earliest descriptions of autism. There are these descriptions of differences in reactions to pain and salient examples of the child being able to play outside in the snow and not experiencing the pain of being in the snow for a long time without gloves or things like that. Even early on, there are some different sensory experiences. Those become recognized a lot more in autism. Unfortunately, there’s been a long history of this assumption that autistic people don’t experience pain as much or are less sensitive to it. A couple of those things come from these early descriptions.
The fact that so many individuals engage in self-injurious behaviors. Things like head banging or skin picking to the point of opening wounds led to this assumption for decades that autistic people must be insensitive or much less sensitive to pain. Since we started talking about autism and diagnosing autism, there has been a long history of that distributing this biased situation of assuming that people are not experiencing pain as much.
Something that’s always coming up is people’s misconceptions from anecdotal perspectives. A lot of the time, even in conversations with people that I have, they will use their past experience with one autistic person and will apply that to every autistic person. We know pain is subjective, so why do we presume that in a certain population subjectivity doesn’t exist?We know pain is subjective, so why do we presume that in a certain population subjectivity doesn't exist? Click To Tweet
We can look at populations of people, which is what we do in research and we gather some good data from there. Whenever we work with someone, we always approach them as an individual. The condition of autism shouldn’t preclude us from approaching people in that way. What you’re saying is that autism can be a risk factor for the development of chronic pain in children and adolescents.
That’s something that the last few years have been taking stock of and is a new idea. That’s exactly where we’re all seeing this not only from the aspect of you’ve got communication issues that might preclude them from getting the management that they need. You’re at risk of having consistent chronic pain in that way that it’s not managed well. You have all these other co-occurring medical conditions, which may be layered to that communication problem and genetic.
There is a lot of evidence of co-occurring epilepsy and things like that you see more of in autism. There’s a lot of work coming out now. Bethany, you can probably speak to this more of the experience of having to live in a neurotypical world, manage your own psychosocial stressors, and things like that. You’ve got miscommunications, mismanagement of pain, extra stressors, and extra medical conditions. You’re left with this constellation of reasons that people might be at more risk for chronic pain.
A lot of people still see autism as a person who doesn’t like noise and light. People tend to hone in on that going to the hospital and things. There are many different noises, smells, and lights, and the lighting’s quite harsh that which makes that such a difficult experience. Neurotypical people struggle with putting words into what they’re feeling. To go in and speak to someone you don’t know about something can be difficult and a lot of people may avoid that altogether because it’s, in their eyes, stress that’s not needed which as we know how chronic pain can develop and things are quite a concern.
Both of you have done some research. I want to dig a little bit into some of the discoveries that you’ve made. I’ve read a lot of your papers. They’re great. We can link to them and point people to them if they’re researchers or educators who are interested. You mentioned sensory processing, which is commonly mentioned with autism and the autism spectrum. How does that start to connect or where are the discoveries that you’ve made between sensory processing and pain processing?
We focused a lot to think about sound and aversion to sounds and visual stimuli that are complicated. We’ve talked a lot about those sensitivities. Even in diagnostic criteria, we talk about, “Does the child respond to their name? Are they bothered by different textures?” and things like that. Pain is mentioned in diagnostic criteria as an example of if they’re insensitive to pain, perpetuating what we talked about earlier that autistic people might be insensitive to pain.
For autistic people who are either sensitive to pain or much less sensitive to pain, we don’t know what the full spectrum looks like that. Even across all these individuals, as pain is such an individual experience. There are likely some people, and we’ve seen them in our research studies, that are hypersensitive to pain. I can put them go through all these pain studies and they are never telling me they’re in pain. Other people cannot participate because even the low-level stimuli are too much and too painful for them.
It’s a wide birth. What we don’t know is how that maps to different sensory sensitivities. We don’t know if the people who are sensitive to pain are also sensitive to light and noise. That’s work that we’re still doing. We’re trying to understand if within the same person, is that general sensitivity to all these different sensory experiences or is it specific to pain, for example. It is something we’re still working on.
The noise receptor itself, which processes noxious stimulation, is not just what people think of as pain, but there’s heat, cold, pinprick, vibration, and itch now being connected to pain. There are many different levels of that processing with pain. We’re talking about sensation. Oftentimes, we’re talking about not only the sensory-motor aspect of a condition but also autonomic processing, which becomes part of that entire experience. Moving up into the brain, we know that in most people, there’s a pain neurosignature, or might we might call it a neuro tag of some sort that’s common in people. Do we see the same neurosignature in people with autism?
The work that we’ve done was looking at how autistic adults respond to heat pain. We can give a small thermo that we can put on the leg and heats up to different temperatures. We can heat that up to a very mild pain experience. In most people, we’ll see the neural pain signature responding pretty robustly the whole time they’re in pain. That includes somatosensory regions and affective regions and is a nice robust signal across this whole network of brain regions. In autism, when we did this, we looked at a stimulus that was about twenty seconds long. We see that whole signature response for the first six seconds, but then while they’re still experiencing that pain, that whole signature is just diminished.
Even though the person is still telling me they’re experiencing pain, the brain response has gone away. That was shocking for us to see because it doesn’t match what the experience is. The person’s still saying that was painful until the end, but the brain response is gone. We did this work because we know that they’re experiencing pain differently, but we don’t know why we’re looking for these mechanisms that trying to understand how to map the lived experience to the neural responses and they don’t match. That’s one of the most interesting things that we’ve seen.
That’s important because when you read some of the studies, we have a clear signature of what pain looks like in the brain. You read other studies and they say, “These are snapshots in time of a human experience.” That might change over the course of minutes, hours, days, weeks, months, etc. A lot of your research clearly pinpoints that in the autism spectrum, but it also might extend and say, “Maybe what we thought was a pain neurosignature in humans, there’s something else that happens once we take them out of the functional MRI machine,” which is so important.
That’s one of the things about the reception of that work has been. I see a number of people asking me, “What if we look at Alzheimer’s disease or other disorders where we see different pain responses, would we see something similar?” We expect something correlates with the experience that we’re having. That’s a basic principle. How we’re measuring it is maybe not right or isn’t giving us the information we need in the autism population. To me, it’s just a big clue that we need to look harder and understand more of what’s going on in the brain while people are experiencing pain.
Anything you’d like to add to that, Bethany?
My research particularly hasn’t necessarily looked more at the neuroscientific aspect of it. What we’ve found is more communicative based and how pain as an experience can shape how the child tells people whom they tell, and how these social factors come into play in this pain experience to shape their particular intensity. Something we found moving away from the neurosignature, that is particularly important from a social aspect is who the individual is with.
From the interviews we’ve done, we found that a lot of the children will be in pain at school unless there was a figure there that they particularly trusted and were close to. For example, a special educational needs teacher who was with them consistently throughout the day. These children would go and just not tell anyone at all until they got home. If that teacher or that trusted figure weren’t accessible, the pain would not be reported. No one would know.
It’s interesting to think about how neuroimaging, because people take those images and they say, “The prefrontal cortex is lighting up, so we have to design an intervention that targets the prefrontal cortex.” You find that that neuro signature is not consistent in this population. You try to map that to what the behavior is, which Bethany is talking about, “Here’s how these individuals are responding in real-life situations or how they’re not potentially responding in real-life situations.” It’s interesting because so much of the day that we have on pain revolves around chronic low back pain.
This is such a different population. My mind is turning over right now thinking about all the various applications where a lot of practitioners and some researchers think they have a clear idea of what pain is. A good part of your message is that we’re on the cusp of learning what’s happening in the body and how various different individuals respond in their environment when they come across a context that they’re suffering.
It’s a very interesting point that you bring up because, in a lot of other sensory modalities, vision, and hearing there, we feel a lot more confident that we can measure pure sensory responses, whereas in pain it’s always overlaid with the emotional psychosocial aspect. As a field, in pain research, we’ve done a good job of thinking about that in that terms. It also is a complication in how we measure things because even when it comes down to when we measure pain thresholds.In a lot of other sensory modalities, we feel a lot more confident that we can measure pure sensory responses, whereas in pain it's always overlaid with the emotional psychosocial aspect. Click To Tweet
In autism, we’ve seen that because of psychomotor slowing and things that we imagine and are more common for autistic people. When we do these reactions time-based pain thresholds, press this button when it becomes painful, that’s going to be different in this population and biased and suggest that they don’t have differences in pain thresholds.
When we do it a different way where we are just giving these stimuli, rating them, and going back down to when it’s warmth, pain, and trying to find that temperature when it’s consistently painful, then we do see that pain thresholds tend to be more different and lower in autistic individuals, which applies in the face of everything that we had this historical bias that people would be insensitive.
I went through a period when I first started doing this work where, “What do we know about pain?” Especially because autistic adults, when they’d come into this study would say, “Push this button when you’re in pain.” They’re like, “What do you mean by pain?” It’s one of those things you don’t think about. You’re like, “Are you in pain?” That’s not an easy question when you have to define it. Bethany, I know when you talked with autistic children, trying to explain that and have those conversations about, “What does pain mean to you?” It becomes even more complicated.
It’s important to use things like PPI panels, hearing the voice of people in the public who are autistic and not just autistic children, but autistic adults as well. Every autistic adult was once an autistic child. Getting that perspective is important. The advocacy in the autistic population is huge. Even hearing from the parents how they perceive their child to describe pain, explain pain, and what pain is to them, essentially. It’s important to get that voice heard and acknowledge it to make the methods that we use, assessing, research, treat and pain as inclusive and accessible as we can.
Something that we’ve done for a study is how Michelle was saying about pressing a button when the pain was perceived, getting that reaction time-based data. We’ve used a sign that the children can put up, which we will say now. When the perception of pain is there, they can just show a sign instead of having to verbalize because, as we know, in the autistic population, there are different verbal abilities. Some children are verbal and some nonverbal. Still trying to get that data in a way as inclusive and inaccessible as we possibly can.
You said the words explain pain, and there’s a whole cognitive theory or approach called explain pain, where you help explain pain to the individual and the neuroscience behind it. We try to simplify it. It makes me think how as far as that work has come, a lot of the work that you’re doing, you could springboard off that and figure out, “How do we now apply this to autism and to maybe those that are hyposensitive and hypersensitive to pain in that population.” We have both in there. It’s important to educate both about pain but in different ways. What’s the feedback from the autism community around this topic and some of the research findings that you have here?
The research I’ve done so far has been quite positive, to be honest. We’ve had some great feedback whereby parents have expressed to us. They’ve heard the children say things about the pain that they’ve never heard themselves, which is massive. The implications that can have in that child’s journey now with pain management are huge. Some of the things that have allowed for that important communication is making an environment where the child feels safe and they have the time to think of what they’re going to respond with.
Also, being open as well with the fact that, “I’m autistic.” There’s a lot of research on how autistic people communicate with one another compared to how autistic and holistic people. Having that open communication of, “I’m autistic. I understand what you are going into and why I’ve been judged in ways,” is probably similar to how you’ve been judged. It made an environment that’s trusting and facilitates that conversation, which has been positive.
When you say providing them with the space to respond, what you’re saying is in the average person, if I take a pin and stick them in the finger with it or prick them, they’re going to feel that pretty fast. There’ll be either physical mannerism or verbal response that happens, but potentially with someone with autism, that is processed much slower and it might not be the type of typical behavioral reaction that you are used to seeing in someone who is not autistic.
Also, given the time for them to process what the feeling, the words they’re going to use to attribute that feeling.
In our busy lives in general, people with pain deserve a little more time. That’s not just people who are autistic, but the whole spectrum of chronic pain. It takes more time to evaluate, assess, develop a relationship, and learn that particular person’s history and how their history impacts their current perception of pain. The point of giving particularly children and adolescents with autism more time is important because that’s when their nervous system is being shaped before they enter adulthood.
We’ve done some interviews with autistic adults where we’ve asked them, “What was your pain experience like? When did you first recognize that you might have a different response than others? How has that shifted and changed as you’ve grown up?” Time and time again, we heard stories of, “I dropped something on my toe and I didn’t have a reaction.” That recognition, that moment that their parent or caregiver was like, “I can’t believe you don’t have a reaction to this. That should be painful.”
That recognition of like, “It is painful. I just didn’t necessarily feel the need to do anything about it.” Having people walk through and talk through these different experiences like that. Being able to have the time to understand that maybe there’s this change in how they’ve decided to express their pain. In talking with people in Bethany’s study as she mentioned that now they can express their pain in different ways.
That is also something that we keep hearing about. It is this recognition that their experience is different that allows them to then have different words to use for it, different descriptions or the empowerment to say, “This is a different experience for me. There is evidence to suggest it is. It’s not just me saying it. It’s backed by science.” That’s the reception that we continue to get. Understanding how that shifts and changes across development is crucial so that autistic children and adolescents now can recognize that. I don’t go through the same thing we’re talking to autistic adults about and how they have been suppressing pain for so many years.
There is a significant amount of talk with regard to early life experiences, specifically, trauma in people with chronic pain. I’m wondering how you’d like to see this work adopted by parents and caregivers, and more importantly, health professionals. Not necessarily the ones working in pain, although we need this information, but I think about going to the dentist, which is a pretty uncomfortable situation for most of us, but most dentists are not familiar with the autism spectrum. How would you like to see this information inform the care of people with autism so that they don’t undo medical traumas at a young age that might sensitize their nervous system later on in life?
What spawned this for me was someone working with a dentist who was doing some research on pain and they started thinking about this specifically and wondering if the brain response was different. That’s how this started. I keep coming back to it, talking to the dentist. At Ohio State, we have a wonderful dentistry clinic that works with developmental disorders specifically. It’s been amazing to work and talk with them about ways that you can implement what we’re doing. We’re looking to try to do some of that work because that’s one of those places where we could have a big impact. This is something you even think about more than I do about where we’d like to see this go early on in the lifespan.
Something that is important is shaping the way healthcare professionals are taught. I don’t want to say healthcare professionals are stuck in their ways, but they’ve been educated to a certain standard that is based on your typical communication and expression. We need to reshape that to include what we know about autistic people’s experience of pain, including different intensities, actual verbalization, and pain behaviors. All these little things that we take for granted in the pain experience to get taught at the root of where this pain management stems from is key.Healthcare professionals have been educated to a certain standard that is based on typical communication and expression. We need to reshape that to include what we know about autistic people's experience of pain, including different… Click To Tweet
There’s so much nuance in this experience in this population. Bethany and Michelle, I want to thank you for being here and for your work. I know that people with autism and their families will appreciate this, but, pediatric OTs, PTs and mental health providers will be interested in this work too. They’re going to want to follow you because I know you’re constantly working on this. Let them know how they can learn more about you and follow you.
You can find me on Twitter for sure at @FaillaPhD and on the Ohio State website, there’s information there on my faculty page as well.
I want to thank Michelle and Bethany for joining us on the show. Make sure to share this information with your friends and family on social media. That would be Facebook, LinkedIn, Twitter, Instagram, and anywhere that people are talking about chronic pain and autism. Thanks for being here and we’ll see you next episode.
- Dr. Michelle Failla
- Bethany Donaghy
- @FaillaPhD – Twitter
- @BethanyDonaghy1 – Twitter
- Liverpool John Moores University
- Increased pain sensitivity and pain-related anxiety in individuals with autism – PubMed
- Initially intact neural responses to pain in autism are diminished during sustained pain – PubMed
- Acute pain experience in individuals with autism spectrum disorders: a review – PubMed
About Michelle Failla
Dr. Michelle Failla is a Research Assistant Professor in the College of Nursing at The Ohio State University. Dr. Failla’s research focuses on understanding the role of social communication in pain responses and management. She is particularly interested in studying pain in populations with differences in social communication, across the lifespan, from autism to Alzheimer’s Disease. As a trained neuroscientist, she works to understand how altered neural processing of pain may contribute to differences in expression and experience of pain. Dr. Failla’s work aims to improve pain management for populations where pain communication could potentially impact care.
About Bethany Donaghy
Bethany Donaghy is an autistic PhD student at Liverpool John Moores University, UK, studying under the Pro-Vice Chancellor Scholarship Award. Her current PhD project explores pain in autistic children and young people with the aims of examining factors which relate to pain experience and expression. Previously Bethany has completed her BSc (Hons) in Applied Psychology and MSc in Brain and Behaviour at Liverpool John Moores University.