The UpTic

Intersectional Identity

January 02, 2024 New Jersey Center for Tourette Syndrome and Associated Disorders Season 1 Episode 6
Intersectional Identity
The UpTic
More Info
The UpTic
Intersectional Identity
Jan 02, 2024 Season 1 Episode 6
New Jersey Center for Tourette Syndrome and Associated Disorders

I had an enlightening discussion with Mason, a fellow advocate in the Tourette's community, about the complex intersectionality between TS and other identities. We explored the stigma surrounding coprolalia, the financial barriers to Tourette’s advocacy, and the dangers of gatekeeping Tourette’s diagnoses. Our conversation shed light on the diversity within the TS experience.

 

Episode Highlights:

[02:22] Kicking people with coprolalia out of the Tourette's community.

[04:16] The camp video that emphasized Tourette’s is not about swearing.

[06:12] Navigating intersectional identities beyond just having Tourette’s.

[07:39] The heavy financial burden of Tourette’s advocacy.

[10:08] Unpaid labor expected in disability advocacy communities.

[12:53] Respecting gender diversity at Tourette’s summer camps.

[14:31] The problem with accusing people of “faking” their tics.

[15:56] Tourette’s manifestations viewed differently across gender.

[17:53] Pretty privilege when it comes to tics being seen as “cute”.

[19:32] Who is really behind the Tourette’s police?

[21:01] Supporting conflicting access needs in the TS community.

[22:50] Barriers to medical transition for trans people with disabilities.

[25:00] Mason’s experience when coprolalia tics first emerged.

[31:32] The importance of visible TS role models across the spectrum.

 

Links & Resources:

New Jersey Center for Tourette Syndrome and Associated Disorders (NJCTS): https://njcts.org/ 

Remember, your story is powerful, and sharing your experiences can be the guiding light for someone else's journey. If you enjoyed this episode, please rate, follow, and share 'The Uptic' with others. 

Send us a Text Message.

Support the Show.

Show Notes Transcript

I had an enlightening discussion with Mason, a fellow advocate in the Tourette's community, about the complex intersectionality between TS and other identities. We explored the stigma surrounding coprolalia, the financial barriers to Tourette’s advocacy, and the dangers of gatekeeping Tourette’s diagnoses. Our conversation shed light on the diversity within the TS experience.

 

Episode Highlights:

[02:22] Kicking people with coprolalia out of the Tourette's community.

[04:16] The camp video that emphasized Tourette’s is not about swearing.

[06:12] Navigating intersectional identities beyond just having Tourette’s.

[07:39] The heavy financial burden of Tourette’s advocacy.

[10:08] Unpaid labor expected in disability advocacy communities.

[12:53] Respecting gender diversity at Tourette’s summer camps.

[14:31] The problem with accusing people of “faking” their tics.

[15:56] Tourette’s manifestations viewed differently across gender.

[17:53] Pretty privilege when it comes to tics being seen as “cute”.

[19:32] Who is really behind the Tourette’s police?

[21:01] Supporting conflicting access needs in the TS community.

[22:50] Barriers to medical transition for trans people with disabilities.

[25:00] Mason’s experience when coprolalia tics first emerged.

[31:32] The importance of visible TS role models across the spectrum.

 

Links & Resources:

New Jersey Center for Tourette Syndrome and Associated Disorders (NJCTS): https://njcts.org/ 

Remember, your story is powerful, and sharing your experiences can be the guiding light for someone else's journey. If you enjoyed this episode, please rate, follow, and share 'The Uptic' with others. 

Send us a Text Message.

Support the Show.

Mason:

I have spoken with someone who like their child was experiencing like copper apraxia that involves touching other people. A lot of the problem was like in the fact that it was a boy who was the one experiencing copper apraxia. Because while there are consequences for like when a girl does this, a lot of the time, there's the perception that like boys are doing it on purpose, or they're using their Tourette's to get away with it. And so I think that depending on the situation, like, it sucks for everyone. I know that we're all supposed to be like, Tourette's made me who I am as a person, and it helps. But it kind of sucks for everyone.

Michael Leopold:

Welcome to the uptick, brought to you by The New Jersey Center for Tourette syndrome and associated disorders, empowering children and adults through education, advocacy and research by sharing the stories and experiences relevant to the TS community. Hello, and thanks for joining us on this episode of the apptech. I am joined here with Mason Mason is a graduate student earning their Master's in Counseling Psychology. They have previously worked in Ts advocacy with NJCTS and we're so excited to have them here on the podcast, Mason, how's your day going?

Mason:

It's going good just doing a little bit of schoolwork, graduating in May. So getting kind of like all the final stuff done beforehand, kind

Michael Leopold:

of at the crunch before the school year ends. Yeah. Well, let's say that I wanted to reach out to you and ask you to be on this podcast after I saw a YouTube video you did a few years ago on coprolalia. In the trek community, one of the things that you talked about in the video was how, as advocates and allies in the TS community, we often just inadvertently other people with coprolalia are kind of saying that no, that's not Tourette's, like what they're going through is you know, because we're trying to combat those stereotypes that the media sensationalizes on Oh, Tourette's, the swearing disorder, those kinds of things. And so we come from a good place, but the way we say it, the words we use, like no, no, that's not Tourette's only only 10% of people with Tourette's have have swearing. You know, we, when we see it like that we without realizing it. We're othering those people and I thought you did a fantastic job explaining that in the video. Do you want to talk to our listeners a little bit about that video and what got you to create it. So

Mason:

it's actually really interesting. I made that video, I believe in like 2019 2020, I don't remember at the start of Tourette Syndrome Awareness Month, because I had already started seeing like all of the like, efforts to distance Tourette's from the people with coprolalia. And it was actually it was kind of like a ranty kind of video I have like 30 subscribers, so I wasn't expecting many people to see it. But it was just kind of me getting it off the top of my head and how I was feeling about it. Because it does sometimes feel like Tourette's advocacy, like mainstream Tourette's advocacy does try and distance themselves from coprolalia. And I remember the one thing that I said in the video that I was like, Oh, that's a good thing to say. That's like a mic drop moment. It was like, a lot of the time people will say oh coprolalia is not Tourette's but for me it is

Michael Leopold:

it wasn't my job moment. Yeah, that's what I saw that I was like, Oh, I have to you know interview them they need to be on the podcast because I this is something I've been saying for a while I remember one of the trek camps a number of years ago, I think it was camp twitch and show they were making so you might actually if you know more about this, I want you to tell the story because I only heard it through someone else. I wasn't there. But apparently they were making some video to dispel myths and stereotypes about TMS. And they they really made a big emphasis on Tourette is not a swearing disorder. And they were like interviewing these kids with Tourette's. We're like I have Tourette's I don't swear uncontrollably like I don't have coprolalia and it really just drove home that point that like yes, we need to be careful to to dispel stereotypes but we also need to be careful not to other though those 10 to 50% of people with Tourette's they do have coprolalia for them. coprolalia is Tourette's it is a swearing disorder for them. I mean, Tourette's is so much that it's so much more than swearing but that that is a part of it.

Mason:

I had actually never seen that video. I I have my own issues with Twitch and Shout but that maybe we can talk about later but like I had never seen that video but it does really drive home that point. I go on this like rant on Twitter every once in a while. People will be like, Oh, Tourette's is not coprolalia only 10% of people and especially when it comes from people who do not have coprolalia the way that I phrased it is that immediately out to you as someone who is not safe when you hear about discrimination against people with Tourette's, and the discrimination that I personally have experienced for my Tourette's. The things that are discriminated against are not the physical tics, they're not the whistling I have physical tics. I have a whistling tic I have so many other vocal tics, but the things that I Received discrimination for our micropro Aliah. And it's a very stigmatized aspect of the condition. And I think it's very important that we keep that idea in our heads.

Michael Leopold:

I notice even subtle things like when we say, oh, only 10% of people with Tourette's have coprolalia. Like just putting the word only in there almost makes it say it like, minimizes that it's kind of passed them aside, like, I don't know, they're just part of that only 10% group. And something I in the last couple years tried to be more mindful of is that and like, I don't say it openly, I would just say, Well, you know, Tourette's comes in lots of different flavors and shapes and sizes. And some people do have coprolalia, about 10%, do some of that go proxy, some have hope apraxia some have complex vocal, like all these different manifestations of it, I actually, I'm reminded of that iceberg slide that we always love to share in Tourette's presentations, where it's got like the iceberg, it's only tics are at the top, we get add to that iceberg all the other dimensions. And that's the other thing I really was really excited to talk to you about was intersectionality when it comes to T S, and how Tourette syndrome is yet another kind of an identity that we form. I'm so curious to talk to you about how that plays into other identities that a person may have.

Mason:

So that's actually something that I really emphasize a lot in like my own advocacy and like talking to people about it. For example, at programs I've worked for, and conversations that I've had about like, if you are pulled over how to have an interaction with police when you have Tourette's, or if you are in an accident and need to have a conversation with like EMS about having Tourette's, those are great conversations that we need to have. But also my experience as a small white person is going to be very different from the experience of a black person or like even like, Man, those experiences are going to be very different. In Tourette's communities, we tend to focus on like the presentation of like, young white boys who have tics and a lot of the research is done on young white boys. It's kind of similar to the way it's done with ADHD and autism. We're familiar with the presentation of the way a lot of neurodiversity appears in young white boys. And when we try and add that intersectionality into it, it's very difficult to find those kinds of intersections and find the research and the things to support it. For Tourette's organizations, they will have like summer camp programs, or they'll have like programs for children and teenagers with threats. And when they ask people to participate in those programs, oftentimes the people that are getting paid to be the administrative team and to be the medical team, and to be the people who are leading that program. There are people who do not have Tourette's. But when you have like, for example, mentor figure or someone who does have Tourette's, they are often not paid. I've had like, experiences where friends of mine have been like you should work for Twitch and Shout because it's a really great program. And I think you would get a lot out of it. And it's like I would love to, but I live in Minnesota. How am I going to get? Are they going to pay me to get to Georgia, I have a full time job and I need to pay rent. Even if I'm not physically in my house, I have to pay rent. So can I afford to go and spend a week working at camp, I am an adult with expertise. I have lived experience. I don't have a master's degree yet. But I am very close to a master's degree. I have lived experience and I have clinical expertise. So it's almost a little bit insulting to be like, Hey, you can come work for us, but we're not going to pay you. You know. And it's not something that just like camps for people with disabilities do. There's like a lot of camps for like LGBT youth that do the same thing where it's like, oh, we would love to have an LGBT adult mentor, but we're not going to pay. And I remember very specifically, there is a Facebook group called the Tourette Syndrome intersectionality group, there was someone who was doing a research project or offered to pay adults with Tourette's to complete the project. And someone was like I really appreciate this, because there's so much talk of Oh, give back help the families and it's like, I can't afford to do that. But you can't pay me to do that. You know, well,

Michael Leopold:

I love what you just said I I have spent so much of my own dollars, Sweat Tears time, like just volunteering in this space and I love to do it but we'll talk about that how like all the costs that I've eaten this next week, I'll be going going out to Long Island for for a treads event and I don't it's very unclear whether I'm going to get reimbursed for that. But it's like the 20 bucks here and there and for me I'm able to do that I'm privileged I can like it. I don't you know I don't bat an eye at it for someone without the means. That's a barrier to being involved in Tourettes advocacy, you know, we don't really talk about the financial component that is expected of you, in addition to your time, your expertise, your service.

Mason:

Yeah, I think as well like, it's kind of similar to how in a lot of fields, you're expected to do an unpaid internship, like finish your program. And so like, if you don't have the means to kind of work for free for a year, then you don't get to do it. And I feel like that really limits the amount of perspectives that we see in Tourette's advocacy. And like the counseling field, for example, like if you are not a person coming from, not necessarily even a background of generational wealth, but if you're not a person coming from a middle class background, or if you're a person that has other expenses, like if you have a more severe disability that limits your ability to travel, or if you are a queer person, or a person of color, who is statistically more likely to be living in poverty, it limits the exposure of those people to like, kids, I've had conversations a lot about representation, especially in my graduate school program, I've had a lot of conversations about representation, and how when I work with kids with Tourette's and teens with Tourette's, there's like an empathetic shorthand, where they know they can trust me, and they understand that I have an experience, because I'm not just an abled person, or a non Tourette's having person who's trying to pretend like I get it, I get it. Representation is so important. Like, I know, a young man who I've met through advocacy, who is a really big soccer fan. And he didn't know about Tim Howard having Tourette's. But when I told him, he was ecstatic, he's like, Oh, my God, I want to be a professional soccer player. And I thought that I couldn't do that because of my tics. And now that he has that representation, and that person that shows him, I can do this. And this is something that I have the possibility and the potential to do, it really helped him feel better about himself. Some of the programs I've worked for, they're very well intentioned, but sometimes their intentions are, do more harm than good. There was a participant who used they then pronouns, and this was before I was out as non binary. And so I was, I was feeling very protective of this participant, independent of this, but and weekend, they were being dead named, and they were being misgendered. And it was one of those things that when I asked, and I was like, Hey, I think that it would be appropriate for us to go around and share our pronouns and our preferred names. And when I said that, I was told that that was not a good idea, because it might lead to bullying, but I'm so confused

Michael Leopold:

that bullying is already happening, if they're if they're referring to this person by their dead name. That's a form of bullying, right? Like,

Mason:

advocacy has like very at the best of intentions. But it doesn't necessarily work out in the best way. During the pandemic, there was the influx of teenage girls who were presenting with tics, symptoms, the immediate response from a lot of organizations was to be like, Oh, we don't know why this is happening. But this isn't true. Tourette's, this is not how Tourette's works. And like, there's also a lot of people online, who infuriate me a little bit, who think they're like the Tourette's police. And they'll comment on someone's videos and say, This person is faking, they don't really have Tourette's. And I think that it's really dangerous to like, form the Tourette's police, essentially. Because from the outside, a lot of these people their tics are fundamentally indistinguishable from quote, unquote, true Tourette's, they've been termed functional tick, like attacks is like the diagnostic term, but they're functionally indistinguishable from, quote, unquote, genuine Tourette's. And so by being like, oh, this person is faking, it kind of opens the door for everyone to be perceived as faking. It also doesn't help that specifically the population that people are saying are quote, unquote, faking is young teenage girls, many of whom are experiencing, like, mental illness and other experiences that make it very hard for them. And I've never heard someone look at a white man and say that man is taking his tics up.

Michael Leopold:

Wow, I just did a moment to reflect you just made some really brilliant. No, you made some brilliant points there. And I'm like, Which one shall we unpack first? That was so great. Okay. It just in general terms, the idea of faking our tics I mean, that is a lesser talked about stereotype that we face in the truck community, you know, mostly in schools, like teachers will accuse students of faking their checks. And I think that's always like that, that's kind of in the back of our head like our collective identity as people with TS there's always this good uncertain that we're going to be called out that someone is not going to believe us not going to believe that this is a real diagnosis. Because in many cases that we've had we know these people that have called this out for this and concern that we will be told or punished because we're doing something that you know, really we can't control but they think it's just behavioral. This is something I was hoping to discuss with you the ways that young, particularly young white sis boys can get away with a little bit more rambunctiousness impulsivity, I'll I'll say aggression. roughhousing like like theirs. And then that also means they can get away more with just the movements and sounds and twitches and speaking out of turn, whether it's a vocal tic or not, maybe if it if it is behavioral, I think we give boys particularly young white boys more leeway on that I was young white boy, I can say I had words on that. I definitely got it. Do you have any thoughts or any any more insightful, brilliant comments on this?

Mason:

Honestly, like not to, I feel like it really depends on the situation. I have spoken with someone who like their child was experiencing like COPPA apraxia that involves touching other people. A lot of the problem was lied in the fact that it was a boy who was the one experiencing COPPA apraxia. Because while there are consequences for like, when a girl does this, a lot of the time, there's the perception that like boys are doing it on purpose, or they're using their Tourette's to get away with it. And so I think that depending on the situation, like it sucks for everyone. I know that we're all supposed to be like, Tourette's made me who I am as a person and it helps change but it kind of sucks for everyone. Yeah, kind of stuck between a rock and a hard place. And I think to like the experiences of young women and girls, the experiences that I mentioned, like of these young women on Tik Tok, where it's like, they're obviously faking their tics for attention. And a lot of the things that young women do in the world are seen as like a ploy for attention, like in a way that things that boys do and young men do are not seen as ploys for attention. I think it's something that can affect different people in different ways. And it's not even necessarily just like a gender thing. If you are a physically attractive person, you're a lot more likely to have more tics, like be quirky, or interesting or cute than a person who is not conventionally attractive. There's like a video that went around of like an attractive like 20 year old man like who's like blinking and like having like both motor tics and be like, you have to stop saying my twitches are cute. And it's like, yes. And if you were not a conventionally attractive young white man, would your twitches be quote unquote, cute? You know, a lot of it comes down to like, not just gender but the way you're perceived by society as

Michael Leopold:

well, like pretty privileged, specific to Tourette Syndrome. That's interesting. I was thinking more about the functional tic diagnosis and the wave of teenage girls and young women that were presenting with Tourette like symptoms during the pandemic. I remember so much of the immediate reaction was, well, we don't really know what this is, but it's clearly it doesn't look like Tourette's. You know, they're they present themselves to a therapist, and he goes away quickly, it seems or I heard other people saying that they all had the same tics that though they watch the video, and then they were only having those, those tics that they saw on the video. And people would say, well, that's not how Tourette's works. Real Tourette's, you generate new tics, they're novel, they change there, whatever. This is the first one I've thought of this in the context of of what you said around women's concerns are often discarded as just oh, she's just doing this for attention. Because that's exactly what this was. It was their reaction to it was, oh, you know, that's not real Tourette's, oh, it goes away after a therapy session. I know, they're just mimicking some guys ticks in a video. Like it really downplayed it and just shove them aside, cast them aside, I thought that did a big disservice when really we should have been saying, Wow, our advocacy, our outreach, our videos, we're reaching people, there are people that never knew that they you know, and now they're going to deceive their neurologist for the first time people that have had this stuff for years are getting diagnosed. This is exciting. Sure, we don't understand the details and why it's manifesting this this way, you know, stress of the pandemic quarantine, who knows, but the I think the attitude could have been a lot more productive and positive, but it's unfortunate. I think that was a missed opportunity.

Mason:

Yeah, the people who are often very invested in people quote unquote faking are not necessarily even the people with Tourette's themselves. A lot of the people who are invested in people faking are like family members who like they've seen the struggle that their family member or their friend has gone through, and they see that this person is like, Oh, they're making fun of it and my family member has struggled and they've gone through so much. There's like one Tourette's YouTuber who they make a lot of videos of Like people on tick tock me like, this person's faking this person's faking this person's faking, they have a lot of people in their comments being like, Oh, thank you, my son has Tourette's. And it really upsets me when I see people making fun of his experience. And so it's really interesting. I think it's very similar to the way that in like, a lot of online neurodivergent communities, it doesn't matter if you have a professional diagnosis. If you're deriving benefit from like, the techniques and the tools that you're finding online, and you're not hurting anyone, I don't really see what's wrong with that, like, I know, I have people in my life who are not officially diagnosed as autistic, but they gain benefit from executive function hacks that you'll see online, or they belong to how to ADHD video about emotional dysregulation. And it really helps them with the way that they're experiencing their life. If you're not hurting anybody, I don't see how finding that community and getting those supports is hurting anybody.

Michael Leopold:

I'm curious to hear a little more about your experience as someone with with a them pronouns and Tourette Syndrome, how that's been received by the medical community and society at large, you know, have you faced any particular challenges discrimination because of that intersection of identities, so not

Mason:

myself personally. But if you do have what is like a mental health or a neurological diagnosis or a neurodevelopmental diagnosis, you will have a harder time accessing medical transition, especially since a lot of like this transphobic rhetoric has been being spread across the country in a much more concrete and very scary way. The way that it's being spread is kind of this idea that like trans masculine people, which is people who are assigned female at birth, that are either non binary or transitioning to be a trans man. There's this idea that like, a lot of them are just poor lost teenage girls who don't know what's going on. And like, they think that they found a community and they decide that they and they quote, unquote, decide that they want to be trans, that they can fit in with their community. Autistic teenage girls are more likely to be trans than neurotypical teenage girls, and they're seeing them use those stats. Yep, JK Rowling made like a very terrible, not terrible, but like this very awful. And like transphobic document, and part of the things that she mentioned was, autistic girls are represented in greater numbers and people being referred for transitioning treatment. And those are reasons that people are often denied transitioning treatment, because it's like, Oh, you are not capable of the reasoning skills to know that you're trans. And that's messed up. But yeah, the

Michael Leopold:

the other thing that bothers me about that, I mean, we could go off on JK Rowling for an hour here, but the you know, turf and anti trans rhetoric, she's she's been spewing, but that is so stigmatizing that people with autism like to say that they are not able to understand their own sense of identity and form that like, sure their brains work differently with their brains still work. It's just a different way of functioning. It's an insult to those people as well. So

Mason:

I work specifically with clients in my internship who are autistic. And so one thing that we discuss a lot in that population is conflicting access needs. Because if you've met one autistic person, you've met one autistic person, no one speaks for the entire community. If someone has like, a sensory sensitivity, where loud noises bother them, but someone else stims, vocally, very loudly, both of them are valid in their needs. But we need to try and figure out a way for both to coexist. And so I think that like the concept with in this situation, is also a concept of conflicting access means, I know that there are like, words that would upset me if they were sat around me, even if they were text like not even necessarily like a slur. But like, if I have something that is a trigger for me, it might be upsetting to hear that as a tip. So the conversation would have to be had about how the needs can intersect and how both parties can work. To find a common solution. Both parties needs are valid, and no one should have the trump card. There's a very excellent counselor that I follow on tick tock talks about the conversational game of the trump card, where you say that you cannot be held accountable because your trauma or your condition, or your identity is the most important one. And so I think that what's important is in healthy relationships, healthy friendships and healthy communities. No one holds the trump card. And I think getting that education is very important. Yeah,

Michael Leopold:

that's a good point. How old were you when the coprolalia started?

Mason:

I was diagnosed with Tourette's when I was 13. And I had had tics starting when I was seven. But I didn't have my first copper Lilia tic until I was, I think, a freshman or sophomore in college. Wow,

Michael Leopold:

what was that like to I mean, for so long you also knowing how much we other people with with coprolalia in our community, suddenly to have that urge to get that free monetary urge to say those things. Was that a shock to you? What was that experience like when it started? It

Mason:

was it was really scary. I have always had complex vocal tics. I've ticked sentences for a very long time. And I've always had complex vocal tics. And so I guess I kind of knew in the back of my head that like hope for laelia was a possibility. And I had also spent a very long time and I had spent a lot of energy being like, not everybody with Tourette swears it's not representative. And then when I started having Capulet coprolalia I was like, Oh, shit, both as a tick and as a reaction. Sorry, that was a fad. It was like, Oh, shit, I've got to deal with this now. And I think it kind of changed the way I perceived Tourette's advocacy. Actually, this was a great conversation I had with someone I know yesterday about how in like the 80s and 90s when the queer liberation movement began, there were a lot of people that were what is called a picket fencer, where we're like, oh, we're gay. But we're not like weird gay, we just want to have a white picket fence and 2.5 kids and a Golden Retriever. We just happen to both be men, or we just happen to both be women. And so it was a very, like, it was a way of being like these other gay people. They're different. We're not like those gay people were normal. And I feel like a lot of Tourette's out because the focus is on the picket fencers, where it's like, Yes, I have tics, but it doesn't impact my life, I can still do important and great things, I can still be a leader, I can still do all of this. And I'm not like those people who have Tourette's who swear and have tick attacks, and use mobility aids, and xy and z. And it's not just within queer advocacy. And it's not just within Tourette's advocacy in like, I thought I should mention that I am also autistic, I feel like we've been talking about autism a lot. And it sounds like I'm like talking about in a very theoretical way. But like, I am also autistic, people who are autistic, we will focus on like, Oh, we're able to do so much we're logical, we're able to figure things out, we're able to look at things from a different perspective. And that makes us not just normal, but better than normal. And we try to distance ourselves from the people who have high support needs, or the people who have like variable support needs. For a while within disability advocacy, there's kind of like two conflicting things, where it's like, either my disability is a superpower. And I gonna be able to do great things because of my disability. And it makes me extra awesome. And you should hire me for capitalism. And then there's the other side, where people are like, Oh, these people with disabilities are so sad, and they can't do anything. And they can't care for themselves. And we need to be able to take care of them for them because they can't care for themselves. And it feels like in a lot of circles, those are the two extremes. And that's not the way that the world works. The world is not black and white, and it exists in shades of grey. And so going back to like the self advocacy question, part of the reason that I self advocate is not even necessarily like, just for myself, it's for the next person with Tourette's who comes along. I've experienced educational discrimination at the higher education level. And it was mind boggling to me that this happened because it's like, was I really the first person with Tourette's? And was I really the first person with copper Lilia, that you've ever encountered? It boggles my mind. That was that I was the first person that they had encountered like that. And so by advocating for myself and fighting for my needs, and like even like going so far as to like get a lawyer involved doing all of this has kind of I think made them think okay, is this a hill will want to die on in future? Not even necessarily just that but like seeing me not just survive my internship year, but thrive during my internship year? Is that going to challenge their perceptions of what a counselor with Tourette's can look like? Myself advocacy has to do with representation for young people with threats and young autistic people. Somehow I don't know if this was on purpose or not, but like somehow, I have ended up with a caseload of many clients with tic disorders. I think I use the term and empathetic shorthand before It's very much like Oh, Mason gets it, Mason knows what's up. Because Mason has the same experience, you have to see it to believe it. Like you have to be able to see people in the positions that you're looking for, with similar lives to you, in order to believe you can do it, like I volunteered for the Tim Howard Leadership Academy for like six years. During my first time I was there, it was the first time I had met someone else with Tourette's in person. I remember very specifically Dr. Cox, who is a professor and has a doctorate in social work. And teachers, I believe at Stockton University, I remember feeling so seen and so understood, I didn't even speak to this woman like to her face. And like, I remember feeling so seen and so validated. Because a lot of the other adults, including a lot of the other coaches at the end DCTS were people with mild tics. So like people who have like facial twitches, or whistling tics, or very mild tics, and I had very obvious tics. And Dr. Cox didn't have like the same vocal tics that I did. But she had very obvious physical tics. And she was able to do her presentation and share her knowledge and share the things that she had experienced. And it was like, okay, so I can be a successful adult with Tourette's. And I don't have to grow out of it. A lot of the adults that we see who are representations of people with Tourette's are people who have grown out of it. Absolutely. Having

Michael Leopold:

visibility and representation across that spectrum is so important. Well, this has been a really amazing call Mason, thank you so much for ticket. I wish we could just go on another hour. Let me know next time you're in New York and we'll hang out. Are you going to do Tim Howard Academy this year? I just submitted my app like two days ago for it? Probably

Mason:

not because the thing is, I'm starting my full time job post graduation in June. I feel like I wouldn't want to like take like a bunch of days off like two months after starting a new job. And also kind of like what we mentioned, I live in Minnesota. So if I'm gonna go to the Tim Howard Leadership Academy, that's like a plane ticket. And that's like, spending time away from like my job when I could be making more money that I would make at the Tim Howard. Shout out to the Tim Howard Leadership Academy adults are actually paying their coaches a stipend. That's excellent.

Michael Leopold:

We do. Yeah, it's a great program always opportunities to do more. But yeah, it's a really great program and we do pay our coaches a stipend definitely helps. But it's been awesome having you here on the uptick. I look forward to chatting with you again. Thank you for listening to the uptick, brought to you by The New Jersey Center for Tourette syndrome and associated disorders, empowering you to stretch the boundaries to live your best life. The NJ center for Tourette syndrome and Associated Disorders NJ CTS, its directors and employees assume no responsibility for the accuracy, completeness, objectivity, or usefulness of the information presented on this podcast. We do not endorse any recommendation or opinion made by any guest nor do we advocate any treatment