← ADHD Experts Podcast
ADHD Experts Podcast
577- Why Chronic Pain Is So Common Among Neurodivergent Youth
00:59:19
Gloria T. Han, Ph.D., and Anna C. Wilson, Ph.D., help parents understand why chronic pain is more common in autistic youth with and without ADHD, how pain presents in unique ways, the impact on daily life, strategies to reduce pain’s impact, and...
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- [00:04]
Dr. Anna Wilson
Welcome to the Attention Deficit Disorder Expert Podcast series by Attitude Magazine.
- [00:14]
Carol Fleck
I'm Carol Fleck and on behalf of the Attitude Team, I'm delighted to welcome you to today's ADHD Experts presentation titled why Chronic Pain is so Common among Neurodivergent Youth. Leading Today's presentation is Dr. Anna Wilson and Dr. Gloria Hahn. Dr. Hahn is an Assistant professor in the Division of Pain Medicine at Vanderbilt University Medical Center. She also serves as a pediatric Pain psychologist at Vanderbilt's Children's Hospital. She works with children and teens living with autism, ADHD and pain related challenges. Dr. Hahn's clinical and research efforts focus on autism and chronic pain and why differences in sensory, emotional and social information processing may contribute to an increased vulnerability for chronic pain. Dr. Wilson is a Professor of Pediatrics at Oregon Health and Science University and a pediatric psychologist at its Pediatric Pain Management clinic at the OHSU's Children's Hospital. Dr. Wilson's research has focused on chronic pain in children and adolescents and how parenting styles influence children's pain experiences. She has also conducted research on how pain in young people relate to ADHD symptoms. Dr. Wilson co authored the book When Children Feel Pain From Everyday Aches to Chronic Conditions. Finally, the sponsor of this webinar is Play Attention. Research conducted at Tufts University School of Medicine demonstrates that Play Attention improves attention, behavior, executive function and overall performance. Harnessing cutting edge NASA inspired technology, Play Attention offers a customized program for children and adults. Your dedicated Focus Coach will tailor a plan for each family member to improve executive function and and self regulation. Take the online ADHD assessment or schedule a consultation by clicking the links on your screen or visit www.playattention.com attitude thanks our sponsors for supporting our webinars. Sponsorship has no influence on speaker selection or webinar content, so without further ado, I'm so pleased to welcome first Dr. Anna Wilson. Thank you so much for joining us today and leading this discussion.
- [02:50]
Dr. Anna Wilson
Thanks Carol. We're going to start with financial disclosures and welcome to everybody attending today. Both Dr. Hahn and I receive research support from the NIH and I also receive funds from my roles as an author and journal editor. We're really excited to be able to talk with you today and we're going to try to cover a lot of information in a short time, so we leave plenty of plenty of time for questions and conversation. We'll start with definitions and information about the prevalence of chronic pain in neurodivergent youth and review some key neurobiology. Then we'll talk about how pain presents clinically in neurodivergent youth and how we can provide the best treatment and support for these youth. I'm going to get us started and then Dr. Han and I will be taking turns presenting today. We know that you all already know what pain is, but we thought we would start with the scientific definition of pain. The International association for the Study of Pain published a revised definition about five years ago. They defined pain as an unpleasant sensory and emotional experience associated with or resembling that associated with actual or potential tissue damage. The group that developed this definition published it alongside six key notes which I think are particularly important when we're talking about pain in children and in neurodivergent individuals. First, they note that pain is always a personal experience that is influenced to varying degrees by biological, psychological and social factors. They also note that pain and nociception are different phenomenon. Pain cannot be inferred solely from activity and sensory neurons. I think a more straightforward way to say this is that pain always involves the brain. Through their life experiences, individuals learn the concept of pain. They also note that a person's report of an experience of pain should be respected and that although pain usually serves an adaptive role, it may also have adverse effects on function and social and psychological well being. Finally, verbal description is only one of several behaviors to express pain. Inability to communicate doesn't negate the possibility that a human or non human animal experiences pain. We also want to describe, define what we mean when we're talking about acute and chronic pain today. So acute pain is short term time, limited response that's typically due to an injury or illness. It acts as a protective signal to help us avoid harm to the body. It typically improves as the body heals. And this type of pain is pretty easy for others to validate and respond to. Chronic pain, on the other hand, is pain that persists beyond expected healing time, which is often defined in the research as more than three months. It becomes its own condition rather than just a symptom. We've come to understand this through research on the nervous system really in the past few decades, which shows that chronic pain involves changes in the nervous system. It is also high, highly influenced by and influences the psychosocial context. And chronic pain is often invisible and misunderstood, which leads to stigma and undertreatment. So it's pretty common for youth with chronic pain to have their experiences dismissed and they get messages like it's just growing pains or there's nothing wrong on this X ray. So it's probably all in your head. These are things that are patients with chronic pain Experience all the time. I want to make one other note about the word chronic. The word chronic does not necessarily mean that the pain problem is going to be permanent or lifelong. In fact, in young people we often do see episodes of chronic pain that decrease or resolve over time or with treatment. The word chronic simply means the amount of time that it has been present. Let's see. And then our last definitions. We want to talk about three primary types of pain. First is nociceptive pain, which comes from actual or threatened tissue damage. This pain is a warning signal to help prevent further injury. And this is the type of pain we have at the time of a broken bone or a burn from the stove. Neuropathic pain is caused by injury or disease of the somatosensory nervous system in which nerve damage causes abnormal signaling like burning or shooting pain. And we see this in conditions like diabetic neuropathy or spinal cord injury. The third type of pain, nociplastic pain, is probably the most common. And this is when there's altered pain processing without clear evidence of tissue or nerve damage. And you might hear other terms related to this, like central sensitization or amplified or amplified pain. Nociplastic pain is often linked to chronic pain conditions such as amplified musculoskeletal pain syndrome, juvenile fibromyalgia, chronic headaches, or functional abdominal pain. How much of a problem is chronic pain in kids? We have a recently updated meta analysis about the problem prevalence of pain in kids in the general population. This came out last year and the data is pulled from 119 studies representing over a million children. About 20% of all children under 18 experience chronic pain, with musculoskeletal pain and headaches being the most prevalent. The impact of chronic pain in this age group varies quite a bit, but we know that about 4, 5 to 8% of kids experience what we call high impact chronic pain, which means that pain is interfering with their lives quite significantly. And we know that chronic pain can have a major negative impact on a child's life. We know now from several decades of research in this area that children with chronic pain are more likely than children without pain to miss school, to have symptoms of depression and anxiety, have reduced social function and impaired physical function, and have sleep problems. But chronic pain in kids really impacts the whole family and their parents are likely to experience missed work, financial stress, emotional distress, and we also see changes in family roles and increased stressful interactions with their child. So now that we have a good high level picture of the problem of chronic pain in childhood. I'm going to turn it over to Dr. Han to talk about pain and autism.
- [10:04]
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- [10:39]
Dr. Gloria Hahn
Even though pain and autism is an emerging area of research, what we know is that individuals with autism may experience particularly high levels of chronic pain, at least higher rates compared to their non autistic peers. Chronic pain and autism is an understudied but growing area of research, potentially because of prior thoughts that individuals with autism have lower pain sensitivity or are not too prone to pain. Now we know that this is potentially an oversimplification because individuals with autism do experience pain and chronic pain. We also know that individuals with autism have much higher rates of physical health problems. Pain might be one of them, and chronic pain may also contribute to them having higher levels of other physical health problems. As far as prevalence rates in larger representative samples, the National Survey of Children's Health and Analysis showed that about 8.2% of children were experiencing pain based on their parents report on certain questions relating to pain and how it was interfering functioning, but that 15.6 or almost 16% of children were noted to experience pain if they also had autism. And then this rate went all the way up to about 20% for individuals with autism who also had at least one other developmental comorbidity like epilepsy, seizures, cerebral palsy or intellectual disability. And in a clinical setting, we have also grown more aware of the fact that autism seems to be overrepresented in pediatric chronic pain clinics. So these are clinics that are specialized in treating chronic pain in youth, not necessarily specifically recruiting for individuals with autism, but it seems that about 30 to 40% of patients presenting to these types of clinics either have a prior diagnosis of autism or upon coming to the clinic, have been identified as potentially meeting criteria for autism as well. Some other general statistics are that this seems to be happening with more autistic teen Girls, where about 60 to 70% of autistic teens coming to pain clinics who also are reporting chronic pain are assigned female at birth. I should also note that chronic pain does affect more teen girls than boys, that there is a sex difference in rates of chronic pain in general. Some other notable Factors are that many of the youth with chronic pain and autism presenting to pediatric pain clinics have pain in multiple different areas, so it's not necessarily localized to just one place. And over 50% of individuals report what would be considered widespread pain because it's affecting multiple different parts of the body. Alongside pain, patients often report symptoms consistent with autonomic dysregulation or autonomic dysfunction, like pots. Like features, for example, orthostatic intolerance might feel more dizzy or be prone to fainting. They're experiencing very high levels of fatigue, low energy, not having enough energy to do the things that they want to get to be able to do throughout the day, like school and other preferred activities, GI disposality, so difficulty digesting foods, which can also be associated with abdominal pain. And then there's also much higher rates of joint hypermobility in this population. So many of our patients also present to us with either a prior diagnosis of eds or suspected eds when they come to see us. This is all unlikely, just a coincidence. It's starting to give us a sense of shared neurobiology or certain aspects of neurobiology that might also be increasing the prevalence of chronic pain in autism. But I did want to also note that official prevalence estimates based on large epidemiological work is still being established. Then I'm going to let Dr. Wilson talk a little bit about chronic pain and ADHD.
- [14:54]
Dr. Anna Wilson
Yeah, I think similarly to autism, the overlap between chronic pain and ADHD is really understudied in childhood, even though research in the field of pain has made it clear that attention plays a major role in pain processing. We also know from experimental and FMRI studies in adults that when people are able to shift their attention away from painful sensations, this reduces pain perception and reduces brain activity in thalamocortical pathways that are related to pain processing. There's also some evidence in adults that individuals with ADHD have higher pain hypersensitivity. And we know that the presence of chronic pain in adults over time reduces attention span and shows related brain changes. In my research lab, we recently conducted a review on chronic pain and ADHD in youth. This came out in 2023 and at the time we identified just 11 published articles on the topic. I did the search again yesterday and I only found a couple more articles, so. So what the limited published data shows is that in samples of youth who have chronic pain conditions, ADHD is present in 15 to 25% of those patients, which is higher than the general population prevalence. And then the information about pain experiences in youth with ADHD diagnosis is really limited. So we identified just two studies that address this. One found that 65% of youth with ADHD reported chronic pain. And one sample of women who were diagnosed with ADHD in childhood found that these women had higher rates of chronic pain as young adults. There's a number of potential reasons for the overlap between chronic pain and adhd, including the fact that youth who are high in hyperactivity and impulsivity tend to have higher rates of injuries that can be painful. So a subset of kids with ADHD may have more exposure to high intensity pain and more opportunities to learn fear related to pain. We're not going to spend a lot of time talking about this sort of ADHD injury pathway today, but I do want to make a note about it. And we are going to shift now to talking a little bit more about the why of all of this. So why is chronic pain more common for neurodivergent youth? And we see this clear overlap in all three of these conditions. And Dr. Han's going to talk about what's happening neurobiologically that might help explain some of this overlap.
- [17:49]
Dr. Gloria Hahn
So looking at the neurobiology of chronic pain can be really helpful for understanding why chronic pain is so much more common for neurodivergent youth, because ADHD and autism themselves are neurodevelopmental conditions that suggest differences in neurobiology as well. A big picture view of the neurobiology of chronic pain. It's first helpful to think about the brain and the spinal cord, the central nervous system. The job of the brain and the spinal cord is really to take in sensory information from our environment and then come up with coordinated responses and figuring out how to respond with once we've sensed things coming in through our senses and our environment. And the brain's primary job is to be the body's protector. It wants to keep us out of danger. And so it's going to detect danger versus safety so that it can make a decision on how to respond in a way that's gonna be most beneficial to us and keep us from harming ourselves. And this process of detecting danger versus safety activates the nervous system in different ways. There's all of these other nerves that branch out from the brain and the spinal cord, and that is what is comprising our peripheral nervous system. That's how the brain is communicating with the rest of the body to make this decision about how to protect us. Part of the peripheral nervous system involves the autonomic nervous system, which has these two streams, a sympathetic division And a parasympathetic division, and the sympathetic division is really responsible for the flight or fight response. So once it senses that there could be danger, it wants to mobilize us and wants to activate us to be able to keep us from getting into harm's way. And then there's also the parasympathetic division which is responsible for what's sometimes called the rest and digest response. So this is a calming and regulatory effect that allows us to experience stress, but then also be able to regulate and calm the nervous system in a healthy balance. The nervous system activates for challenges and then calms down for recovery. It finds a way to do this in a balanced way as we navigate life's challenges and potential sources of danger or novelty or safety. As far as how this relates to chronic pain, pain is really our body's protector. Pain occurs when there is an imbalance of more sympathetic compared to parasympathetic activity. And individuals with autism and ADHD may be more prone to this particular profile of nervous system imbalance, which then leads to chronic pain. Because some of the other features of neurodivergence are also related to this profile of nervous system imbalance. For example, individuals with autism and ADHD have also been reported to have higher levels of stress throughout the day or chronic levels of stress that last for long periods of time. There's much higher rates of anxiety in individuals with autism and adhd, higher rates of trauma as well. Early adversity and profiles suggesting sensory sensitivity, so either being hyper or hyporesponsive to sensory inputs, which contributes to this imprecision and imbalance of the nervous system as it's trying to process, process all of the information coming in to the nervous system so that the brain can come up with these coordinated responses with that profile of sympathetic or fight or flight type activation. There's also less parasympathetic activation, so less of this relaxation response and regulation response, even when there are inevitable unpredictable stressors that happen from day to day. So putting this all together, when we talk about potential shared neurobiology of neurodivergence and chronic pain, as we talked about in the beginning of this talk, we know that these three conditions seem to be very much related. And also there's high levels of overlap between autism and ADHD in the ADHD category as well. So we know that something's going on here where these different groups of individuals or people who are in impacted by these different conditions might have some shared neurobiology that's reflecting this higher sympathetic compared to Parasympathetic activity, where the brain's more likely to perceive threat and danger compared to safety, which is going to generate and amplify the pain signal. Some aspects of neurodivergence that could lead to this nervous system imbalance includes sensory sensitivities and dysregulation. In both autism and adhd, there's much higher levels of sensory sensitivities, even though they're not diagnostic criteria for having these conditions. We know from the literature that up to 90% of individuals with autism are estimated to have co occurring sensory sensitivities and that individuals with autism also have these types of sensory sensitivities where they might take in a particular sense and they're perceiving it as being more aversive or uncomfortable than would be expected. There's also differences in attention and executive functioning. So as Dr. Wilson mentioned, attention plays a really big role in how we are experiencing our sensory inputs and then experiencing pain. If we are attending to a lot of our sensory inputs and potentially worrying a lot about them, or the brain's interpreting those inputs as being dangerous, that attentional bias towards pain or somatic sensations in general is going to be part of the nervous system imbalance and experiences of pain over time. Both ADHD and autism also are characterized by differences in cognitive and emotional processing. So there could be more cognitive inflexibility where once we have experienced something uncomfortable like pain, we're more focused on it. And it can be really hard not to be very worried about it and start to think about all the things that could be going wrong and leading to this pain. But as we mentioned earlier, we can have pain, real pain, even without the presence of tissue damage or some underlying medical condition or disease process that's going on in the body. And for individuals with neurodivergence, there's also differences in how we're processing emotions. And that can be related to the way that we're also interpreting the sensations that are coming from our sensory systems and in our bodies. And neurodivergence also affects our social functioning and social processing. So if an individual has experienced a lot of interpersonal difficulties or is having trouble in these different social environments, that can also very much ramp up this sympathetic response of perceiving discomfort or threat or anxiety in social situations. That's putting the nervous system more at this imbalance that's also seen in chronic pain. All of these things together can start to explain the overlap of chronic pain, ADHD and autism, and how this is leading to higher levels of chronic Pain. Importantly, as we talked about in the first slide, pain is biological, psychological and social. So altered neurobiology is just one aspect of an individual's pain experience. And a lot of research shows us that psychological and social factors also contribute to nervous system regulation. It can influence that imbalance that we're talking about and therefore influence our experience of pain. And, and these psychological and social factors can both increase or decrease our experience of pain. One framework in the chronic pain literature that can be really helpful for understanding how pain is neurobiological, psychological and social is the fear avoidance model of pediatric pain. So I'm going to walk you through this and you can follow the red dot as I go through. So let's say a child or adolescent has an injury or illness or has some sort of event where they start to experience pain. Most of the time when we experience pain, we have a natural negative response to it where we don't really feel comfortable in our bodies and we want to get rid of the pain. Caregivers and clinicians also naturally have this response where we never want to see our child or our loved one in pain. And so we might also be very worried about it and want it to go away. And so then this reflects a type of fear of the pain itself and having anxiety about the pain because naturally we're worried that something might be wrong, there might be something that we haven't caught, there might be an injury or disease process that we don't yet know about that's leading to this pain. And when we have fear of pain, it's everyone's natural response to want to escape the pain or engage in some sort of avoidance behavior like not doing the thing that might cause pain, reducing physical activity, or not doing things in environments that are associated with pain, school might become particularly stressful and pain might get in the way of school functioning. So we might want to avoid school, for instance. And over time, if we engage in this high level of activity, avoidance and strengthening this idea that this pain is very dangerous and that we're very fearful of the pain, over time it can lead to deconditioning, depression, withdrawal and levels of disability where we start to lose engagement with our daily activities and lose levels of functioning that are really important to our daily well being. On the other hand, an individual might experience experience pain and then with low levels of fear about the pain, so low pain related anxiety, this could lead to more confrontation like behaviors where through gradual exposure to activities, even if they might be associated with some discomfort, as long as we know that we're safe to do those activities because of medical examination showing that our bodies and the structure of our body is actually safe to do these activities. With confrontation or graded exposure to these activities, we can start to reduce that fear of pain and get unstuck from that fear avoidance cycle, which then leads us eventually to recovery, regaining our functioning and pain fading more and more into the background as something that's not impacting and getting in the way of what we want to do throughout the day. Finally, just putting this all together, this fear avoidance cycle definitely can be influenced by those aspects of neurodivergence that we talked about on one of the previous slides. Looking at neurobiology. With increased sensory sensitivities, pain itself can be more aversive and uncomfortable, leading to more fear of pain and desire to avoid certain environments that would lead to that discomfort. Attention and executive dysfunction could shift our attention more towards the pain experience. Again, increasing fear of pain pain and leading us to want to avoid activities that could cause pain. The cognitive and emotional processing profile can also make us more worried about the pain and have pain itself be a more distressing experience. And then finally, when we're having trouble with social interactions or having interpersonal difficulties, it can make just general aspects of daily life really, really stressful. And we know that that chronic stress can lead to that nervous system imbalance. These biopsychosocial factors can definitely affect and influence the fear avoidance cycle, essentially keeping neurodivergent individuals potentially more vulnerable or more caught into the cycle on the left, in contrast to the cycle on the right, where we're headed towards low fear, confrontation and recovery. The way this shows up in the clinical presentation of pain in neurodivergent youth is that in addition to pain, many times neurodivergent youth are also experiencing sensory sensitivities and sensory overwhelm. So these are aspects of their daily experience that might not be considered pain. But in general, they're also more sensitive to lights, loud noises, certain tactile inputs, and that's all leading to this discomfort and nervous system imbalance. Because it makes environments like school or engagement in hobbies and social activities more stressful. This can lead to more dysregulated episodes or outbursts. And so one thing that's important to note is that just because an individual is having these dysregulated outbursts doesn't mean that they're trying to be difficult or necessarily trying to make up that they're experiencing pain or having this chronic type of discomfort. It could be that they're so overwhelmed and their nervous systems are chronically in this state of more fight or flight versus and digest that these behaviors and disruptive behaviors start to arise. And so something that we'll talk about later in the talk is that sensory supports and sleep regulation are particularly important intervention targets because this can bring the overall level of that fight or flight activity of the nervous system down a little bit, increase more likelihood that there could be a balance between those two streams of the nervous system. We know that sleep problems are prevalent in autism and ADHD even at baseline. We know that sleep problems are more involved for individuals with neurodivergence separately in the pain literature. We also know that sleep problems can predict increased pain and difficult engaging in daily activities. Sleep is also something that we see a lot as being disrupted for individuals with neurodivergence and chronic pain. As I mentioned before, chronic fatigue and significant behavioral deactivation, or just feeling very very tired throughout the day, not able to engage in one's normal schedule appears particularly relevant to the experience of chronic pain in autism. This is another factor that deserves attention and should be thought of and considered when we're thinking about treatment and how to support individuals with neurodivergence and chronic pain. Cognitive inflexibility or repetitive or obsessive thoughts about pain can also be part of the clinical picture of experiencing pain. When an individual is more prone to all or nothing thinking or hyper fixation on certain topics. When that all or nothing thinking or hyper fixation starts to relate to pain. Pain that can make it so that if we're experiencing any level of discomfort at all, we really, really don't want to engage in that confrontation or graded exposure to the discomfort, which is what's going to help to teach the nervous system over time that the pain signal might be more of a false alarm, that it's not indicating underlying tissue damage, but that we can actually rewire and regulate the nervous system as we increase pain activity with safety and with care so that we can regain our functioning. Higher levels of social exclusion, peer rejection or bullying can also lead to chronic stress, leading to more withdrawal from environments that are really just typical and day to day. For most youth, like school and other recreational environments, it can lead to higher levels of depression and anxiety. And separately in the chronic pain literature, we know that these types of things are prospectively predict pain. These things can have demonstrated somewhat of a causal relationship as something that's going to increase the likelihood that an individual experience pain. Because social exclusion and bullying are also more prevalent for neurodivergent individuals. That could also be an important part of the picture to acknowledge when we are trying to treat the chronic pain. One important thing that I like to mention, especially when treating chronic pain for autistic individuals, is that reduced engagement with special interests can be an important indicator of how pain is interfering with an individual's life. Sometimes it can be easy to overlook this because we're thinking, oh, it's not a big deal that someone's not really talking about their special interests as much or wanting to engage with their special interests because at baseline they might be engaging with that interest at higher rates than would be expected. But this is something to really pay attention to because it can really be indicating, even if the individual is not expressing pain explicitly, it could be indicating that they're experiencing a lot of chronic discomfort and pain in their bodies. That's something that I always like to assess and pay attention to when I'm trying to understand how pain is interfering with someone with neuro divergence. And with that, I'm now going to turn it over back to Dr. Wilson to talk about how caregivers and providers can help.
- [35:39]
Dr. Anna Wilson
I think the good news about pain in kids being biological and psychological and social is that even if we aren't always able to directly change biological factors, caregivers and providers can help make a big difference. And in terms of positively impacting psychological and social factors. And here I just put these little icons of the places in this cycle where parents and providers have the potential to really make a positive impact and to sort of intervene for the better. So we want to talk a little bit about what comprehensive treatment for chronic pain in children and adolescents looks like. So first, a comprehensive approach recognizes that because chronic pain is biopsychosocial in nature, treatment should also be multi pronged and multidisciplinary. And these chronic pain clinics are often a team approach that includes a pediatric anesthesiologist or other physician, pain specialized psychologist, physical therapists, and sometimes an occupational therapist, nurses or other professionals. They recognize that there is not a single solution. We like to say that having chronic pain is like having a car with four flat tires. So we often see kids who have tried many things to manage their pain which haven't been successful. And when you ask more about it, the story is often we tried this medication and it didn't work. We tried PT and it didn't work. We tried acupuncture and it didn't work. And they've been inflating tires, but just one at a time. And what is really needed is A coordinated set of multiple approaches to help sufficiently calm the nervous system and support increased folks function. So this is a very individualized approach to treatment. And it's important that as you're considering a plan for treating a particular child, that it's really tailored to that child's needs and that the plan is feasible for the child and family to achieve. These treatment programs typically focus on function, not not just pain reduction. There are certainly many interventions that help us reduce the perception of pain. But it's not just pain itself that we want to treat. We are often focusing also on how to help kids return to what their valued activities are. And most of these programs are outpatient programs. But for youth with more severe impairment, there are more intensive programs like inpatient or day treatment programs available. There's a few reasons to think that these programs are likely to be appropriate for neurodivergent youth. First, they're often housed in pediatric hospitals where providers are comfortable working with developmental differences. The chronic pain treatment approach for working with children is typically tailored to an individual child's needs. Then, pediatric programs also involve parents and caregivers who know these children best and are in a great position to be able to support progress at home. There's also a few things that we would recommend in terms of adapting pediatric chronic pain treatment for neurodivergent youth. So first, first, like Dr. Han mentioned, really addressing sensory supports and sensory dysregulation. Physical therapists who work with kids with chronic pain often use some of these approaches in treatment for chronic pain. And these will be perhaps more a core part of treatment for neurodivergent youth. Neurodivergent youth typically need more individualized behavioral and social supports in school settings to help manage pain. A pediatric pain psychologist can provide those consultations and recommendations to school staff. We also know that directly addressing executive function challenges can really be useful as part of pain treatment. Both occupational therapists and psychologists can help with addressing some of these things. We also know neurodivergent youth may need some extra attention paid to the aspects of of life that are routine that we know can impact pain. So we talked a little bit about sleep, but also just balancing nutrition, movement, daily activities and routines can really make a positive impact on pain experiences over time. And that is an important area to focus on as well. And then finally, providers can sometimes forget that taking time to learn from a child or teen about their special interests can go a long way. You can use this connection to your advantage if you're a clinician. Now, we want to just Wrap up with a few tips for caregivers and some take home messages. One is to start low and go slow. If you have a child who is struggling to walk to the end of the driveway, you want your starting point to be a short slow walk that's gradually increasing over the course of weeks. We don't want to start with expecting kids to run a 5K. We also want to be mindful of negative interpretations of the child like they can't do something or they're acting out. And just remember that some of these behaviors may be due to unaddressed sensory overwhelm or executive dysfunction. It can be helpful to provide visual clues and physical reminders related to pain management. So when pain is at a really high level, executive function is the first thing to go for all of us and having a visual or physical cue to remind you of different coping approaches can be really helpful then similarly with non compliance, if you have a child who's not willing to participate, try reducing the initial expectation of moving more gradually and keep calm if you can. So when kids are in pain or sensorially overwhelmed, parent distress or can or provider distress can really amp this experience up and finally finding support and taking care of yourself. I like to say that caring for a child with any one of these conditions is what I call black diamond parenting. So really finding the balance between when you push and when you accommodate for kids with these conditions can be really complex and tricky. That's something that pain psychologists can also help with. These are our take home messages. I think understanding some of this basic pain neurobiology can be really helpful. Understanding that pain may be different in neurodivergent individuals is important and that treatment is available and you can support your child's comfort and help improve their function over time. And then finally we have this resources sheet that is available for download that includes online and other resources that we recommend as well as information about how you can find pediatric pain clinics around the country and some research articles. I'll stop there so we can move to Q and A.
- [43:33]
Carol Fleck
Thank you both so much for such an informative presentation. Dr. Hahn had mentioned the association between hypermobility and ADHD and I'd like to let everyone know that Attitude magazine actually has a feature coming out in the winter issue on the emerging research involving hypermobility and ADHD and inflammation and adhd. So very relevant. The winter issue will be on sale in certain retail stores and in subscribers homes in early November. So thank you for mentioning that. Now to your questions. I have two similar questions that are about when professionals appear to be uninformed. One question is how can we advocate for ourselves with clinicians who say they don't see anything wrong? I'll start with that and either one can answer.
- [44:32]
Dr. Anna Wilson
I think advocating for yourself and your child is and or your child is an important part of this care. I think, surprisingly, veterinarians get more education about pain than human doctors do. So people are always shocked to hear this. But doctors don't get a lot of specialized education around chronic pain and pain neurobiology. And I think that's changing a little bit now. But you may need to provide some education. One of the things that I one of the resources on the resource list is something that's called the comfortability program. And that website has a ton of helpful information. And I think is where I would point providers as a first step to sort of understanding a little bit more about that. I don't know, Dr. Han, if you have other ideas.
- [45:29]
Dr. Gloria Hahn
I was just going to say don't get discouraged when you're trying to figure out how to help your child. And imaging or different medical testing is coming back negative. It doesn't mean that your child is not experiencing pain, because the concept that Dr. Wilson talked about with nociplastic pain and that pain can exist even without the presence of tissue damage, that's a concept that I think a lot of pain doctors and individuals who specialize in chronic pain are very much aware of. And so I think sometimes finding a clinician who understands those aspects of chronic pain using Those resources that Dr. Wilson just mentioned, can be really helpful as well.
- [46:17]
Carol Fleck
Okay. The other similar question is how can I advocate for. For my child in the school setting when teachers don't understand chronic pain issues?
- [46:28]
Dr. Gloria Hahn
So this is one area where I think I enjoy supporting my patients the most is as a pain psychologist, being able to support documentation for the schools so that teachers, school administration is all in understand having a. A deeper understanding about chronic pain and what this student is going through. So one of the best ways is to have someone who understands the needs of the child potentially advocate or write a letter that would initiate a 504 plan where an individual could get accommodations at school. And in that letter, in that plan, I would recommend having accommodations that are specific to these things that we talked about in today's talk that might be influencing a student's experience of pain in the school environment. I think that can go a really, really long way. And there's ongoing efforts to help school personnel and teachers understand more about chronic pain because it is such an invisible condition. Sometimes there's no overt signs of injury at times, which can make it hard to advocate for your child. But I think that's one of the best things that can be helpful. Dr. Wilson, I don't know if you have other thoughts.
- [47:49]
Dr. Anna Wilson
I think that's what I would recommend, too. I think for a lot of kids with chronic pain, we're working to try to help them to be able to attend a full day of school. And part of what the accommodations often are is helping school staff understand that pacing the day is going to be important and, and that we may not be able to expect them to return to full time school attendance. Day one. This is going to be a gradual process, but having a quiet place to take breaks, having them be able to access comfort and things, to sort of sensorily calm themselves down during the day is going to be an important part of helping them stay there for the whole day.
- [48:33]
Carol Fleck
Okay, are there pain triggers and how do we find out what they are and how to stop it? I know you mentioned this, but how can a parent dig deeper to find out the source of a child's pain if there is a trigger?
- [48:52]
Dr. Anna Wilson
Yeah, I think this can be so tricky. I think when pain is episodic and happens every once in a while, it's much easier to identify potential triggers than when it's. Once it's at a point where it's happening every day, it's much harder to identify those specific triggers. And sometimes we see that really, especially for this nociplastic pain, it is just an accumulation of stress and sensitivity that kind of tips the scale to experiencing pain rather than a very specific trigger. I don't know. Dr. Han, when I work with patients, I have a really terrible analogy about. And I use this thinking about headaches in particular, because it's just a good. I think it's a good example. But I have this analogy of thinking of it like your nervous system is a boiling pot of water. Stress is like potatoes that you're putting into the pot, and whenever the pot overflows, that's when you get a headache or get pain. And a lot of the things we're talking about today for neurodivergent youth, they may just have a little more water in their pot to start with. And we're looking at preventative things to kind of scoop out some of that water, lower it as much as we can. And then sometimes you can control potatoes and sometimes you can't. There's going to be potatoes that come occasionally. And if your water level Is low enough to start with. It may not boil over. This is a convoluted metaphor. But the idea is that there's this threshold at which the nervous system is just. It's too much and then we're experiencing pain. So sometimes it's really hard to identify super specific triggers.
- [50:45]
Dr. Gloria Hahn
I would also say that the neurobiology or the nervous system dysregulation that's going on during those moments, it might not be as important to identify the specific trigger, but then to help teach the individual relaxation strategies that are actually helping to balance out the nervous system. When an individual is experiencing pain, Increasing those helpful relaxation strategies and small skills and tools and behaviors that help the individual feel more regulated in the moment, that's going to make a big difference over time.
- [51:23]
Carol Fleck
A college counselor writes, I'd like to know how to support neurodivergent kids in college who experience pain. Some students with autism hyper focus on the pain and that's all they talk about. How can I help them learn healthy coping strategies rather than keeping them stuck in how bad the pain is?
- [51:48]
Dr. Gloria Hahn
I have a few thoughts about this. So when there is hyper fixation, something that I try to be aware of is like, is this kind of a cognitive style or something that is also happening in other areas? So is there hyper fixation about multiple different things? And do the hyper fixations lead to distress in the context of hyper fixating about pain or having a lot of worry thoughts about pain because of the fear avoidance model that we just described, that does make an individual more vulnerable to then detecting, having the brain detect more potential signs of threat and danger, which can actually amplify or turn the volume up on the pain over time. One thing is to help the individual build insight into that process. Not in a blaming or shaming way, but just to say, oh, this actually makes so much sense that you'd be experiencing discomfort and pain and having a lot of worries about about it because we're hyper fixating on it. In lieu of that, we can use strategies from cognitive behavioral therapy to shift the thinking patterns. We can also come up with some replacement behaviors or things that we know are adaptive coping strategies for chronic pain. And so I would say even for the individual trying to support the college student, for them to be aware that the hyper fixation could be amplifying the pain signal and that the pain is real, but that there's other ways that we can kind of start to redirect the student and build up these other more helpful behaviors. I think that could be a really helpful Strategy for supporting the student.
- [53:25]
Dr. Anna Wilson
And I think anything that you can do to help that student access things that are available on campus that are potentially like engaged distraction too. Like being able to give yourself an opportunity for those hyper fixation thoughts to kind of go down a little bit because you're involved in doing something else. Ideally, those are things that are pleasant and comforting to the individual.
- [53:55]
Dr. Gloria Hahn
Okay.
- [53:56]
Carol Fleck
Someone writes minor divergent kid is 20 years old and suffers from several chronic conditions. Honestly, there are times when I've doubted whether the pain is real, psychosomatic, just an excuse to retreat from the world or something I caused. I don't know what to do. Do you have advice for this mom?
- [54:19]
Dr. Anna Wilson
I mean, I think this is such a great, such a great question and I think is really the experience that a lot of parents have. We certainly would like to first say this is not something that parents. Cause I think that kids are born with all sorts of varieties of nervous systems and have all varieties of experiences that sort of lead them to where they are at. I also think that it's really important to recognize that pain is a real experience for individuals at every age. And is there sometimes an element for kids of sort of milking it or really like using the pain to get out of things? Yes. And the pain is real. I don't think those are necessarily mutually exclusive all the time. So we'll see a little bit of a mix of both. Both. But I don't know that it's helpful to do anything but deal with it as it's a real experience that kids are experiencing. And when they are stressed out and avoiding things, that is also then probably amplifying the pain experience. I think it can just be really, really tough. And there are even in the young adult years things that parents can do to help support these kids. I don't know. Dr. Han, if you have other specific thoughts.
- [56:01]
Dr. Gloria Hahn
I think the fact that this parent asked this question is showing that they're showing concern and that they really care about their child. And I think that goes a long way. And so one of the things that can be really helpful is validating the child's experience. Experience of pain, even if it seems to not make sense or that there's not an identifiable trigger, that there's a trigger that's not to the magnitude of what the child is experiencing. Validating the pain experience I think is really important. Just like what the definition of chronic pain, those six points that Dr. Wilson mentioned, that it's a subjective experience and it's worth acknowledging. Then I think it's really helpful to start to think about what is the pain trying to communicate. Communicate. So pain is our body's protector. So at some level, in that moment of discomfort, the brain is perceiving some sort of threat or something that our brain is saying, I don't want to do this right now. I can't do this right now. So there's a level of threat or fear in that moment. And so thinking about what the pain is trying to communicate can then give us a sense of like, oh, how could we adjust the environment or do the thing that we want to do slightly differently and make accommodations or modifications in a way that's going to reduce that threat signal? Or the extent to which the brain is perceiving the situation as dangerous or uncomfortable. I think that can be really helpful to start to approach the pain in a nonjudgmental way. Then. The other thing that I wanted to mention is that just because there's not clear, clear evidence of tissue damage or any structural abnormalities in the body doesn't mean that the pain isn't still very real. Because of what we talked about, going back to that concept of nociplastic pain. And so I think that concept can really be validating to parents and also very validating to the child as well. So the point of hope is that, okay, there are things that we can do to help increase comfort and reduce the fear of pain over time. Pain might be trying to communicate something. How can we really understand the individual's needs and experiences? What are they trying to communicate? And how can we help them communicate that and get their needs met in ways that are adaptive and helping them achieve their goals as well?
- [58:23]
Carol Fleck
Well, unfortunately, that has to be our last question because we're out of time. But Dr. Wilson and Dr. Hahn, thank you so much for joining us today and sharing your research and clinical expertise with our ADHD community. We really appreciate it.
- [58:41]
Dr. Gloria Hahn
You're welcome.
- [58:43]
Dr. Anna Wilson
You're welcome. Thanks so much.
- [58:45]
Carol Fleck
And thank you to today's listeners. If you would like to access the event resources, visit attitudemag.com and search podcast 577. The slides and recording are posted a few hours after each live webinar. If you're listening in replay mode, simply click on the episode description. Please know that our full library of Attitude webinars is available as a podcast. It's called the ADHD Experts Podcast, and it's available on most streaming platforms. Please make sure or make sure you don't miss future Attitude webinars articles or research updates by signing up to receive our free email newsletters@attitudemag.com Newsletter Letters for.
- [59:30]
Dr. Anna Wilson
More Attitude podcast and information on living well with attention deficit, visit attitudemag.com that's a D I M a G dot.
- [59:41]
Carol Fleck
Com.
- [59:49]
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