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And we are going to be talking today in honor of World Movement Disorders Day on November 29th, 2024, about stigma, particularly in children with movement disorders and tics and Tourette syndrome. So thank you for joining us today, Jackie.
[00:00:47] Dr. Jaclyn Martindale: Thank you. I'm so excited to be here.
[00:00:50] Dr. Sara Schaefer: All right. You know, In anticipation of this podcast, I read your excellent scoping review reframing stigma in Tourette's syndrome, which was published in the European [00:01:00] Child and Adolescent Psychiatry Journal last year. I wonder if we can start by us hearing what your definition of stigma is.
[00:01:09] Dr. Jaclyn Martindale: Yeah, thank you. That's a great question. So I think stigma is a really challenging concept. Stigma itself refers to the negative labeling of someone. And in the article and in general, I talk a lot about stigmatization, which is like the actual act of labeling or setting someone aside or linking them to a negative stereotype or undesirable characteristics.
The thought is that when someone is negatively labeled, they're seen as different, and then there becomes this justification of us versus them, and people feel justified in treating someone else differently because of that. And what I talk about a lot in the article and as well as when I do these types of talks is that stigma is so much broader than just bullying, which is what most people think about.
We look at it on this social ecological model, which takes [00:02:00] into current all these different layers of stigma. So we think about the individual level, which is really how the individual's thoughts, fears, perceptions and what stigma includes at that level, including how they see themselves.
And then there's the interpersonal level, which is where bullying lies. This is really how individuals interact with others and their environment, so including their peers, their teachers, their family but also their social environment. There's the community level which encompasses organizational or community environments, such as accessibility or availability of services, education or healthcare.
And then lastly, we think about the structural level, which is the broader policies, laws, practices and this is where socioeconomic factors will be included. Or things like resource allocation national institutes. Desires to fund organizations or research and things like that.
[00:02:58] Dr. Sara Schaefer: I thought it was [00:03:00] so helpful to think about it in this continuum all the way from the self up to the entire broader ecological landscape that one is in as a patient with a movement disorder. We've talked in some other episodes for World Movement Disorders Day with folks about stigma as it relates to adults with movement disorders.
Is or should stigma be thought of differently in the pediatric population? And specifically related to tics, are there elements that are unique to kids that need to be considered in the conversation?
[00:03:35] Dr. Jaclyn Martindale: Yeah, so obviously stigma impacts individuals at all ages. But when you're thinking about pediatrics or youth in particular, there are these unique periods of development that we have to account for. And so periods like adolescence, which are really impacting how individuals see themselves. and impact their well being.
This is a tough time for all individuals, right? You're figuring out [00:04:00] yourself, your body, your emotions, this complex social system, and then you add in difficulties, like tic disorders or other movement disorders, and it really makes it more challenging. And specifically for tics, they're really unique because they're both visible and audible to others.
And so it makes them really noticeable and that makes it easy to negatively label or perceive them as different. And people just don't understand tics. And so when they have these movements or their sounds are often mislabeled as like behavioral or intentional. And that really impacts their ability to make friends, how they interact with others.
Including school, like how their ability to do school or interact with school and their teachers. And so you can imagine just how that impacts their kind of overall mental health and their well being. We also know just thinking about brain development in general, that early life stressors can alter brain structure and function through like epigenetic changes.
And so you can only imagine [00:05:00] that when you have groups of individuals who are more at risk for stressors, that also impacts their brain structure and function. Now, studies haven't specifically been done in Tourette syndrome, but it's hard to imagine that the same wouldn't be true and that can impact their overall outcomes.
[00:05:18] Dr. Sara Schaefer: Now you mentioned the relationship that a child might have in the classroom with a teacher. Obviously children have different support systems in place than adult patients do. Instead of care partners, they have parents, teachers, coaches, other adult family members. How do these adults in the room impact stigma for these patients, for pediatric patients?
[00:05:41] Dr. Jaclyn Martindale: Yeah, so interestingly enough, the other people in the room are often more of the problem. I think it's true for all ages, but I've had so many people, both in the clinical setting and the research setting, talk about how their tics don't necessarily bother them individually. And granted, that's not true for everyone, but it's more how [00:06:00] others interact with them and how others see their tics.
And a prime example is, if you have an eye rolling tic, a lot of people will perceive that as being rude or disrespectful. And they don't take the time to ask what that is or why you're doing that. And how you do that can really impact how they see themselves and their desire to interact with others. There's not a lot of disorders out there that we treat because of how it impacts others, but I think these visible disorders like tic disorders and Tourette's syndrome, that is often a big driver because of the social impact.
And so it's really interesting to think about. And a lot of this stems from lack of awareness or these misconceptions about tic disorders and Tourette's syndrome. The other thing I want to say is that how the Adults in the room are impacted is there's also courtesy stigma.
So these parents or caregivers. Will often be negatively labeled just from their association with the [00:07:00] individual, with the effective disorder. Another example is parents or caregivers might be judged as that the tics are a result of their parenting style or their discipline style and that can lead to affiliate stigma which is then how they start to negatively think about themselves because of that interaction. And so it can impact not only the affected individual, but those around them.
[00:07:24] Dr. Sara Schaefer: Wow, so many layers to think about. You mentioned that people with tics and with movement disorders in general are at particular risk of stigma because of their audible or visible nature. And also you mentioned some misconceptions about tics. I just want to delve into that a little bit more. What other aspects of of tic disorders make them at particular risk of stigma?
For example how tics are portrayed in the media. Yeah.
[00:07:54] Dr. Jaclyn Martindale: Yeah. So as I mentioned tics are audible and visible, so it makes them really easy to notice and [00:08:00] identify. And people will immediately perceive that as different or something that's out of the ordinary. And so unlike other visible disorders though, tic disorders are often compared negatively
and so I think that is one layer of how type disorders put people at risk for stigma. But That also probably stems from a lot of the misconceptions, and that comes from the media. And when people hear the word Tourette's Syndrome, the first thing they immediately think about is somebody shouting obscenities, which is coprolalia.
And that, honestly, in reality, it only happens in about 10 percent of the Tic Disorder and Tourette's Syndrome population, but that's what most people associate Tourette's Syndrome with, and that is because that is how it's portrayed in the media. And the media has a really negatively skewed view of most disorders in general, but including tic disorders and Tourette's syndrome, and that really impacts what people think of disorders, how they view disorders, and then how they treat those [00:09:00] individuals with that disorders. It can also impact really what they think causes the disorder, which, also impacts their behavior.
And I think those two things both the audible and visible nature and then the misconceptions are two big areas that put these individuals at risk.
[00:09:19] Dr. Sara Schaefer: Yeah. And we've talked a lot about various angles of thinking about stigma and childhood movement disorders. What else do we know about this? And also, what do we know about the potential consequences for these individuals?
[00:09:33] Dr. Jaclyn Martindale: Yeah, so that's a good question. Stigma impacts many movement disorders across the lifespan, and there's a growing body of research looking at stigma in these disorders. I think for a long time we've assumed that it's there, but we really haven't understood how it impacts these individuals and that broader aspect of, stigma is so much more than just bullying or the label of the disorder.
And so we know [00:10:00] Stigma in general can really impact individuals quality of life how they view themselves, which impacts their mental health, their well being it can also impact their ability or their desire to manage stressors and also their risk of suicidality, and so those are really important things And because of that, it's also really important to screen for that stuff.
And that broader impact of stigma in medical care. We need to be asking how these disorders impact them on a day to day life, their ability to go to school, their ability to go to work, or just within their daily routines, because too often these things get missed. because we're not asking. And so there are missed opportunities to provide better care, to offer resources or to connect them with support groups that could really make a difference in their day to day lives.
[00:10:52] Dr. Sara Schaefer: I'll add that I think everybody listening should read your paper because there were some surprises in there, talking about how Tics can [00:11:00] impact somebody's ability to get a driver's license, for example, which is something that I had never considered before. And mostly how that's likely related to, the person giving the driving test, just not understanding the disease and having misconceptions about it.
[00:11:16] Dr. Jaclyn Martindale: Yeah. And that's true in multiple areas. And so driver's license are just one example, but there's also the physical aspect of it, so even individuals with tic disorders will come to me with questions on how it impacts their ability, or if it impacts their ability to get a driver's license, thinking about the physicality of what kind of tics they have and whether that will impair their awareness.
So we have those conversations. There are things like occupational therapy evaluations that can make sure that they have a safe driving environment because we want these individuals to do everything that they want to do. But on the other side there's all these bureaucratic processes about having to prove they have a tic disorder [00:12:00] or not necessarily in the United States, but in some other countries we've also seen like just not being able to get a driver's license or even be able to do the driver's test, and I'm sure that happens here, too. Because they perceive the individual with the tic disorder as incapable. And so they've already made the judgment before they've even taken the test.
[00:12:23] Dr. Sara Schaefer: Well, We've talked a lot about the reasons for stigma, the effects of stigma. How about combating stigma based on your work or work that you're familiar with? What are the most effective ways to combat stigma?
[00:12:38] Dr. Jaclyn Martindale: Yeah, so I think combating stigma needs to be multifaceted and if we think about on these broader levels like structural education and awareness are like first and foremost and that's what a lot of these patient organizations or advocacy organizations are doing. They're trying to change people's knowledge and perceptions about disorders so that they can [00:13:00] reduce misconceptions, which is a large part of where stigma stems from. But if you think more on the opposite end of that social ecological model, we also need to equip the individuals with the right resources. We need to set them up for success so that they can successfully interact with their environments and do the things that they need to do.
We need to ask those hard things in clinic. Is there teasing? Is there bullying? Are they having trouble getting accommodations at school or work? And trying to minimize unnecessary stressors. Treatment wise, behavioral therapies work on like coping skills and managing stressors, right? Life throws a lot of stressors at us, but with these individuals, how can they manage and face adversity despite their disorder.
And I'm currently working on some research looking at promoting resilient skills in these individuals to see how it impacts some of these downstream effects like mental [00:14:00] health and wellbeing, because that's not really understood within this population well.
[00:14:05] Dr. Sara Schaefer: So, Let's shift our focus a bit to social media. We talked about media portrayals, right? Social media is a whole other animal and an animal that a lot of kids are using. And I'm sure that on TikTok and things like that. They're both positive and negative portrayals. They're empowering portrayals of tics.
There are misconceptions being thrown around. What is your view on the role of social media in stigma in creating or combating stigma in Tourette's syndrome and childhood movement disorders?
[00:14:38] Dr. Jaclyn Martindale: I feel like that's such a loaded question and I think it has, both positives and negatives. Setting aside the broader like concerns about how social media impacts youths mental health, like just in general, what is portrayed on social media can either perpetuate or mitigate misconceptions of how somebody views a disorder.
[00:15:00] So specifically with tic disorders and Tourette's syndrome, what is on social media on these bigger platforms such as TikTok or even YouTube This really impacts how others view the disorder and what they think of the disorder. And, again, that can go positively or negatively. There's a lot of individuals out there that use it as an advocacy platform, teaching others about the disorder, teaching them evidence based facts, so that way we can mitigate those misconceptions.
I also think that it provides a sense of community for some individuals and for a lot of individuals. Actually, it's a place where they can find and connect with that community. And so a lot of the support groups live on platforms like Facebook and have been a huge source of support and honestly, like family and community for these individuals.
And so that is the positive side to it. But like all things on social media, you need to be mindful of what you're watching and the source [00:16:00] of where it came from On an individual level we also know that tic disorders are suggestible, and so watching or seeing others tics may not be beneficial for the affected individual's well being or daily life, and so that's something that needs to be taken into consideration when you're having these conversations with your patients.
[00:16:20] Dr. Sara Schaefer: All right, so you mentioned some of the continued work that you're doing on resiliency and tic disorders. Your scoping review identified a lot of information about stigma in tic disorders and also identified some gaps. Can you speak to the ways that you think stigma research can be advanced moving forward?
[00:16:38] Dr. Jaclyn Martindale: Yeah, so I think a lot of what I talk about is based off of theoretical frameworks and other populations. A lot of this work is done in individuals who identify with sexual or gender minorities or HIV or other mental health disorders. And so there's a lot of research that needs to be done specifically within tic disorders and Tourette's syndrome, but also other [00:17:00] movement disorders.
Really trying to understand, like, how and why stigma impacts these individuals so that we can figure out how to modify that or change it and make their trajectory better. I'm currently working on validating a stigma scale that will more objectively measure individuals perceptions of stigma on all these different levels, so at the individual level, interpersonal, community, and structural levels, so that way we can track this over time and see how it is associated with mental health, being, resilience, and physical tic symptoms.
With the updating scoping review, there has been a lot more out there but a lot of it focuses on that interpersonal interaction and so how it impacts them within the educational system or within their family life, which is very important. But I think we need to look more on an individual level and see how these are impacting the individuals [00:18:00] that we're trying to take care of.
[00:18:02] Dr. Sara Schaefer: Exciting work in progress. All right. so, final question. You have a broad audience at your disposal here on this podcast. What do you want to relay to our listeners about stigma in childhood movement disorders and tic disorders?
[00:18:16] Dr. Jaclyn Martindale: Yeah, so I thought long and hard about this because I think this is a really important topic and it impacts so many individuals. I would say two things. So one is err on the side of assuming something is related to a disability or disorder. So whether it be a behavior, a sound, or a movement, you're much better off at assuming it's related.
To the disorder than to not, and that's a lot of times where that disconnect comes, assuming that something is intentional or behavioral or because of a drug side effect or something like that. And so if you err on the side that it's related to the disorder, I think it, it's not always perfect, but you're much better off in doing that.
And then secondly, [00:19:00] I would say that people with disorders and disabilities are people first. So regardless of what disorder or what age that we're talking about, treat people with kindness and compassion and the benefit of doubt. Your actions and words matter, our actions, my actions and words matter, and it really impacts how these individuals think of themselves and how others think of these disorders.
[00:19:24] Dr. Sara Schaefer: Wise words.
Thank you very much for this enlightening conversation, Jackie. It was a pleasure talking to you.
[00:19:30] Dr. Jaclyn Martindale: Thank you so much. I really appreciate this opportunity.