Episode 169: Destigmatizing Tourette’s through storytelling – with Kevin Helgren

The episode transcript is below.

Carolyn Kiel: Welcome to Beyond 6 Seconds, the podcast that goes beyond the six second first impression to share the extraordinary stories of neurodivergent people. I’m your host, Carolyn Kiel.

Thanks for tuning in for today’s episode! I’ve got a great interview coming up with today’s guest, Kevin Helgren, about his experience having Tourette syndrome. He talks about getting diagnosed with Tourette’s, his experiences in school – including an important change in his mindset that happened between middle school and high school – and how he shared his story in his talk entitled “You’re Scaring the Bears: The Power of Tourette’s.” And yes, there’s a story behind the significance of that title – we go into that too. Towards the end of the episode, Kevin also shares how Tourette’s has shaped him as a person, and how it has intersected with his identity as a white cis gay man.

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And now, here’s my interview with Kevin Helgren! Kevin recently graduated with his MBA from the Stanford Graduate School of Business and is interning with a private equity firm in San Francisco. Kevin is also a Tourette syndrome advocate who has shared his experience having Tourette’s in his talk called You’re Scaring the Bears: The Power of Tourette’s. Kevin, welcome to the podcast.

Kevin Helgren: Carolyn, thank you so much for having me. I have really appreciated and enjoyed getting to know more about Beyond 6 Seconds these last few weeks, and I am thrilled to become a part of this really powerful community.

Carolyn Kiel: Oh, thank you. I appreciate that.

So how did you get diagnosed with Tourette syndrome?

Kevin Helgren: So my story with Tourette’s started a bit later than most folks’ stories who, who have Tourette’s. I was diagnosed in sixth grade and statistically folks with Tourette’s are, are often diagnosed earlier than that. And mine happened seemingly overnight. I woke up one morning and was making these uncontrollable noises that I, I, you know, couldn’t help. And the next few weeks and maybe even couple of months were a blur, as my family and I tried to figure out what was sitting at the root of this, right?

And back then certainly, and even to an extent today, the medical community didn’t know a ton about Tourette’s, just because it shows up in such disparate ways across folks who, who have Tourette’s . So I think my initial diagnosis was something that doctors called PANDAS (P A N D A S), which stands for Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcal infection. Which is a mouthful and really a fancy way of saying I got strep throat and that triggered some sort of imbalance in my brain. And it, it, it led to my having tics. So that’s what my story looked like in the beginning. And I’ve of course since then learned a lot more about the neuroscience behind Tourette’s and I’ve leaned into the lived experiences that it’s afforded me, but you know, thinking back to the onset of my diagnosis in sixth grade, it was, it was a big curve ball that I wasn’t totally sure how to swing at.

Carolyn Kiel: Was it like one, like one particular tic that it started with, or was it a couple?

Kevin Helgren: Yeah. I think if, if my memory serves me, it’s, it’s been a while since since it all started. I think my first tic was like a clearing of the throat. And I think from there, it evolved into a slight blowing out of, of my nose. Something that almost sounds like a sneeze. And then the tics became a little more vocal in nature, and I’m sure that you’ll hear a few of my tics throughout this discussion.

And I think that’s the really interesting thing about Tourette’s, Carolyn, is that not only is it not a monolithic or universal experience across folks with Tourette’s, it’s also not the same for a single person with Tourette’s on any given day. Tics come and go. They are more frequent in certain settings. They are more frequent based on how much exercise I’ve gotten, how much sleep I’ve gotten, what I’m putting in my body. So again, going back to the, the confusion in the medical community, Tourette’s is very much a moving target and it’s, it’s not looked or felt the same really on any given day these last, I don’t know, 17 years of my life.

Carolyn Kiel: Mm-hmm, yeah, it, it definitely does show up in, in different ways. So what was it like being, you know, I mean junior high or middle school is not like a great time for most people, I think. So what was it like for you to suddenly have to manage through these tics that kind of came on from out of the blue?

Kevin Helgren: Yeah. I’m, I’m really glad you called that out, Carolyn, because to your point, middle school isn’t particularly fun for anyone. Our bodies are changing. We’re thinking different thoughts. We’re, you know, saying different things. We’re navigating the world in, in different ways. And for me, layered on top of an already awkward and tough chapter of life was, was Tourette’s. Right? These uncontrollable vocal or motor outbursts that really took me by surprise.

I think what was most jarring for me was that up until my diagnosis, I was a really happy, enthusiastic social kid. I had a ton of friends in elementary school. I played sports. I was in the band. I focused on academics. In a lot of ways everything was, was going well for me.

And, and a bit of context there. I think the reason I worked so hard was because my mom who had me at a very young age and was a single mother raising me for the first five, six years of my life. I saw how much she had sacrificed for us and for me really. So I wanted to do right by that sacrifice. And that hard work was rewarded until my diagnosis.

And it was at that point that I, I paused and asked myself, you know, why me? I thought that I was doing everything right. I, you know, have cared about the right things. I’ve allocated my time and energy in, in what I thought were the right ways. So middle school was a really forlorn chapter for me. I, you know, relinquished my seat at the front of the classroom. I was walking along the edges of the hallways with my eyes glued to the ground, in complete silence. I minimized everyday interactions I had with other kids, mainly because I didn’t want to give them an opportunity to uncover perhaps that I was different.

And, and, and not that it was news to anyone. Tourette’s for a lot of folks is a very noticeable and vocal thing. Not for everyone, but for the most part, my tics have been fairly measurable and observable. So, so, you know, it’s not like I was keeping a, a secret, but it was more so that I wanted to close myself off from interactions because I thought the less time I spent with people, the less likely it would be that they’d ask me questions that frankly, I, I didn’t know the answers to at the time.

Carolyn Kiel: You mentioned kind of almost taking it upon yourself to isolate and minimize and to try to avoid drawing attention to your tics and drawing that negative attention to you. Did you experience from the other side, like either bullying or people making comments or people like just visibly noticing and, and calling it out? Like, was that part of it as well?

Kevin Helgren: You know, I’m sure it was Carolyn. And I’ll be honest, I don’t remember very many specifics from middle school. My answer to that question today is very, very clear as a more conscious and thoughtful person who in a lot of ways has, has started to own what it means to navigate this world with Tourette’s. And I don’t know if I’d use the word “bullies” in my everyday life right now, but there are plenty of folks on almost a daily basis who I see either making comments or, or, you know, shooting dirty looks my way. And I’m sure we’ll get to this, but, but at this stage in my life, I view those interactions as teachable moments, as opportunities for me to shed a little bit of light on something that folks are otherwise unfamiliar with.

But yeah, in, in, in middle school, again, I isolated because I didn’t want to get hurt. And I thought that because I was different, the likelihood of my getting hurt as a function of other people not understanding was pretty high.

Carolyn Kiel: Yeah. Yeah. And especially as you said, if you don’t really understand it yourself, you can’t give those teachable moments because you’re still trying to figure out what’s going on, it’s so new. Yeah, absolutely.

Kevin Helgren: Exactly.

Carolyn Kiel: Yeah. So, you know, middle school was a, a difficult time where you really isolated yourself and, and tried to separate yourself, but it seems like things changed when you went to high school. So what kind of gave you that, what motivated you to change your, the way that you thought about your Tourette’s and to just sort of change the way that you were acting in high school?

Kevin Helgren: Yeah. Yeah, yeah, yeah. You’re exactly right. Going into high school, I came up against what I didn’t realize at the time, but I now see as a, a powerful inflection point. And like most good things in my life, it can be traced back to my mom.

Carolyn Kiel: Mm-hmm.

Kevin Helgren: She sat me down on the couch one afternoon, the summer before I started high school. And she of course had seen the toll that Tourette’s had taken on me in middle school. And frankly, Carolyn, the toll that it had taken on her too. I’m her only son. She had me, again, at a very young age. She wanted to protect me from hate and bigotry and ignorance. So it was probably pretty hard for her too.

And she sat me down on the couch one afternoon and said, “you know, Kevin, I get that middle school was really hard, but high school doesn’t have to be that way. You can choose to keep living your life in isolation. And to be clear, I wouldn’t blame you for making that choice. And no one else would either, because you’re still going through a lot right now. Or, you can break yourself out of that isolation and start to own the things that make you, you. One of which is having Tourette’s, right? And that makes you a bit different.” And I think it was that conversation, Carolyn, that allowed me to reframe my neurodivergence, my being different as not a hindrance to, but an enabler of uniqueness and authenticity and confidence and self-assuredness, right?

And the very first thing I did tactically in high school was I said, “okay. If I want to tell my story before other folks have the chance to tell it for me, I’ve gotta beat ’em to the punch.” So my mom and I during parent teacher conference, before my freshman year of high school would go around and meet all the teachers. And with each of them, I’d say, “Hey, I have Tourette’s. I would love if I could get the first two minutes of the first day of class to get up at the front of the room and share with my peers what that means and what it might look like for them.” And every single teacher was happy to give me the floor.

So I thought through my messaging and I shared that story, and I shared it for two reasons. One, getting the cat out of the bag, so to speak, makes me more comfortable. Because believe it or not, bottling up your tics, it is physically and mentally and emotionally exhausting. And the second I make that disclosure, I feel more comfortable ticcing and can spend less energy on bottling those tics up and more energy on the task in front of me. So that was the first reason I shared. And the second reason I shared was really to extend an invitation to folks, to, to ask questions or to engage in conversation. I think that there is so much stigma and confusion and, and discomfort around neurodiversity because folks don’t know how to engage. And I thought that by opening that conversation up from the beginning, folks would feel more comfortable asking questions or, or sharing thoughts, which I think is gonna lead to a, you know, heightened understanding for, for everyone around, you know, what, what, what it means to be neurodiverse and how that’s gonna show up, either in your life as someone who is neurodiverse or in other people’s lives, as they share time and space with you. .

Carolyn Kiel: Yeah, absolutely. And what were your classmates’ reaction to that as you’re telling each class about your Tourette’s and kind of telling your story for the first time?

Kevin Helgren: Yeah. So that’s something that I’ve continued to do in, in life. Be it any time I start a new job or switch teams at work, or when I was in consulting, you know, joined a new project with a new client in a new part of, of the country or world. And I think, you know, in high school, folks are still trying to, you know, come into their own skin. So no one, you know, no one necessarily expressed like gratitude or appreciation for my sharing, but you could tell that it made them maybe more comfortable in the moment. And I think it allowed for more organic conversations, either in between classes or, you know, at lunch, I’d have folks come up and say, “Hey, so, you know, what, what does it feel like to tic? Or is that something that you can help? Or how often do your tics change?” So it, it, it definitely spurred conversation.

I think since then just as a function of, of getting older and hopefully more mature, I am met with so much kindness and so much grace for the most part, Carolyn. You know, be it a response to an email that I sent out at the beginning of my summer internship saying, “Hey, I’m Kevin, this is who I am. And this is what this means.” And I, I always link the video that, that you referenced at the beginning of the podcast, just as a way to, to break the ice, if folks have 12 minutes to kill.

And you know, I think it’s, it’s interesting how my perspective on Tourette’s has evolved over time. Because in sixth grade it was the bane of my existence. And all I could do was ask myself why. And now I think the kindness and the grace and the empathy with which I am met when I talk to folks about Tourette’s, when people choose to listen, it reminds me that, you know, for every 10 less than stellar or less than empathetic people in the world, there are about a hundred deeply empathetic and very stellar people who are willing to hold time and space for conversations like this one.

Carolyn Kiel: Mm-hmm. Yeah, I think that’s great. And especially, you know, the, the people like your classmates and your workmates and everyone that you have, those personal professional relationships with, the fact that you’re willing to be open and share about your Tourette’s, I think, as you said, really helps educate people. Because a lot of times the only images we have of Tourette’s are like in media and that’s almost never good. So it’s really good to have a positive, real life example that people can say, “oh, okay. I, I understand what that is because I, I knew Kevin and he explained it to me. And so, okay. Like I can contextualize this.”

Kevin Helgren: That’s right. That’s exactly right. I I’d like to think that it, it kind of humanizes it for folks and makes it a bit more real. And I think that holds true for all types of, of neurodiversity. Be it, you know, measurable, observable or otherwise. I think also Carolyn it’s, it’s, it’s bidirectional. Right? I am only comfortable sharing those stories because I’ve been really, really lucky in terms of the spaces I have occupied and the folks who have occupied those spaces with me and alongside me.

And also, I, I think the power of the domino effect is real, right? The more authentically you show up in your spaces, the more encouraged other folks are gonna feel to do the exact same thing. Be it, you know, leaning into their identity as a woman, as a queer person, as a person of color, as a differently abled person, as a combination of a lot of those things. Right? So I think just the more, the more strongly we can lean into our authentic selves and this commitment to, you know, sharing our stories thoughtfully and unapologetically, the, the better off we, the collective we are, are going to be.

Carolyn Kiel: Yeah, absolutely. And, you know, you shared your story on a, a pretty public platform through your talk that you gave when you were in, in your business school.

Kevin Helgren: Mm-hmm.

Carolyn Kiel: That was the one I referenced earlier, You’re Scaring the Bears. And I’ll put a link to that in the show notes so that people can watch it after they’re done listening here. As you said, it’s 12 minutes and yeah, a really great talk. How did you get the opportunity to give that talk at your school?

Kevin Helgren: Yeah, it is a program at Stanford called the LOWkeynotes program. And just to ground folks in some context, as Carolyn mentioned, I just recently graduated from business school. I went to the Stanford Graduate School of Business to get my MBA. And my first year of business school, I applied to the LOWkeynotes program. A written application and a one minute video submission. And the, the premise behind the LOWkeynotes program is to give students at the Stanford Graduate School of Business the chance to speak to something that they care deeply about. It may have to do with business. It may have to do with something totally unrelated, which was the case with mine, right?

And I had, I had spoken very publicly about Tourette’s before. It’s a conversation that, again, I am willing to have, eager to have, and have regularly, almost daily, I’d say. But I saw the LOWkeynotes program as an opportunity to almost institutionalize my lived experience in a way that A, helps kind of ease the burden on myself. So again, tactically, the fact that I can send a link out via email before I join a new organization takes a little bit of the emotional labor off, off my shoulders, if, if folks are able to watch it. So that was helpful.

But also, and I think most importantly, I felt compelled to, to kind of use that platform to share my story in hopes that it would encourage other people to, to do the same. And the, the reactions that I’ve gotten to that video since I started sharing it a year or so ago have been really powerful, Carolyn. And, and they’ve, they’ve been my fuel on a lot of days. And, and, and it’s reminded me why sharing stories is so important.

In fact, it’s a, a timely conversation that we’re having. I got a message on LinkedIn on Sunday. So what four days ago, five days ago. And usually it’s something to the effect of, “hey, I really appreciate your sharing. You’ve kind of, you know, shown me the, the power of, of leaning into my most authentic self.” But this one in particular was special because it was someone who is applying to Stanford for business school right now who also has Tourette’s. And statistically speaking, that doesn’t happen super often because there aren’t very many of us out there. But between LinkedIn and Instagram and Facebook, getting messages from people for whom the video resonated I mean, it, it, it, it’s just, it’s such a powerful reminder for me of of why I chose to do it. And also it, it fills me with a lot of, of gratitude for the folks whose shoulders I stood on when I chose to kind of take that leap of faith and, and go out there and, and share my story.

Carolyn Kiel: Yeah. I mean, that’s really powerful because again, we don’t get to hear a lot of sort of first person narratives of people with Tourette’s really talking about their experience. And as you said, kind of you know, putting a, a human face or humanizing the experience and making it real.

I’m resisting the urge to like talk through all of the points of your video, because I want people to watch it! But I, I will ask one thing. So it has a very interesting title, which is called You’re Scaring the Bears, and that’s kind of like the opening story of it. So maybe we can touch on that. Like where, where does that, that phrase come from and what does that mean for the video?

Kevin Helgren: Yeah, it’s, it’s a great question. And I’m glad you asked because it means the title is working. And it’s not something that I, that I came up with on my own. Part of the LOWkeynotes program is you are assigned or, or paired with a communications coach, a communications professional who kind of works with you through the story arc, the narrative, the messaging. And I was, I was telling my coach David a story about you know, an interaction I had and he said, “oh my God, Kevin, the phrase you just said, You’re Scaring the Bears, let’s use that!” And I thought it was a wild idea at first, but I think it, it, it speaks to a real inflection point for, for me.

So, brief context: when I was in college, I did a cross country bike ride from Texas to Alaska. So I spent 70 days biking from Austin to Anchorage to raise money for cancer research. And those 70 days were really energizing and really inspiring. And they taught me a lot about who I was and who I wasn’t, and about the folks I was lucky enough to, to do that ride with, my 26 teammates. So I was feeling really, really powerful by the end of that summer. I had just done something physically and emotionally and mentally taxing that I had worked really hard for. My family flew up to Anchorage to watch us cross the finish line. And we decided to spend about a week in Anchorage afterwards as a family, just kind of vacationing, soaking up the, the long summer days in Alaska.

And one of those days we went to the Anchorage Zoo. And I was at the bear exhibit. And I think my parents were there, my grandparents, my cousins. And I was watching the bears and I, I ticced a couple times. And the woman next to me looked over the first time I ticced, and I of course noticed out of the, out of the corner of my eye. You get really good at picking up on those sorts of visual cues when you’ve got something like Tourette’s. But I didn’t think much of it. I wanted to give her the benefit of the doubt and assume, Hey, she’ll get it. It’ll click that, that I’m not doing this on purpose. Tic again. She looks again, and this time a little more disgruntled. And then the third time I tic, she finally goes, “will you stop that?” And I turned to her and I said, “sorry, stop what?” And she said, “will you stop making those, those noises? You’re scaring the bears.” And I, I kind of sat with that for a second. And after I, you know, composed myself, I said, “ma’am just so we’re clear. These are not noises that I’m making on purpose. I have Tourette’s. And if you want to learn more about what that means, I’d happily share. But you know, you, your concern for the bears is a bit misplaced.” And, and she seemed pretty startled at first.

And, and even today Carolyn, I have, as you can imagine, what, 15, 17 years worth of data on how people respond to those sorts of, of, of comments or to, to my interjection. And again, you know, 80, 85% of folks respond with, “oh, my gosh. I’m so sorry. I had no idea. Thank you for sharing.” And some will say, “you know, I would love to learn a little bit more.” And it’s engendered a lot of really powerful conversations. And then a small minority of folks, even after I tell them that I have Tourette’s, it’s like they don’t, they don’t care. They don’t want an explanation. They just want me and my noises to stop inconveniencing them and their surroundings. Right? And that woman fell into that, that small camp of folks who even after an explanation really wanted nothing to do with, with me.

And, you know, that upset me in the moment. And it, you know, it used to upset me when folks weren’t receptive to it. I think what I have since come to realize is that someone else’s unwillingness to learn or understand or empathize, that’s not mine to own. You know, I can only do so much, but I can’t make someone care. So that was a big unlock for me. And, and again, a really sad and disheartening situation in the moment that made me feel pretty small. I can now look back on as, as a big unlock for me, a really big learning that I’ve, I’ve tried to carry with me since then.

Carolyn Kiel: Mm-hmm. Yeah. You never know how people are gonna react and it’s good that most people, it seems like really wanna learn or are really sort of receptive to, you know, having their behavior checked or like being called on it or however you say.

Kevin Helgren: Totally.

Carolyn Kiel: And just to be clear, the bears were not scared. I’m sure they did not notice at all.

Kevin Helgren: Something tells me that the bears weren’t startled by, you know, someone 50, 60, 70 feet away. If anything, I was probably a little more scared of them at the time. But that’s what she was concerned about, and to each their own, I guess.

Carolyn Kiel: Yeah. And you mentioned before that recently you had an incoming student to Stanford with Tourette’s who had seen it and reached out to you to express appreciation, but what has some of the other feedback you’ve gotten been like about the video?

Kevin Helgren: You know, Carolyn, I think what I have been most heartened and comforted by is how many people who don’t have Tourette’s and who really don’t have any reason to care about Tourette’s have reached out and, and thanked me for my willingness to share. And I think one of the points I tried to make in that video was sure, for me, neurodiversity means Tourette’s. For others, neurodiversity might manifest in different ways. Be it anxiety, be it depression, be it, you know, there’s a, a whole host of, of mental health challenges that, that, that folks are working through. But the point I tried to make was we all have differences. And the extent to which those differences are observable or measurable of course varies from one person to the next. But I have, I have been really again, really heartened by folks reaching out saying, “Hey, I don’t have Tourette’s, but this part of my life does make me feel different or ostracized or excluded and hearing your story, you know, gave me a little pep in, in my step.”

So I don’t know. I, I have been I think first and foremost, humbled and flattered that so many folks would take the time to watch and listen. But the fact that so many of them after listening, you included, you know, feel compelled to, to reach out is, is really rewarding. And again, it reminds me of how willing so many people in this world are to hold time and space for important conversations.

And I think that’s how, you know, as trite as this may sound, change happens. I don’t think change happens overnight. I think change happens over time and I think the most reliable fuel for change is, is dialogue. It’s conversations like this one that allow folks to think and process and feel in ways that are meaningful to them.

Carolyn Kiel: Mm-hmm. Yeah. And, and as you said, it seems like people are really relating to the experiences that you’ve had, whether or not they have Tourette’s, but as you said, everybody has some way that they felt different or they felt ostracized or kind of singled out in a negative way. So sounds like your story’s really bringing those experiences to light and, and helping to educate people about Tourette’s at the same time.

Kevin Helgren: Yeah, it’s exactly right. Again, it’s just been so rewarding for, for me to think about how my relationship with Tourette’s has, has changed and evolved. Again, something that used to make me sad and lonely and isolated has become a core part of who I am. And I, I mention in the video, you know, even if I had the chance to go back to sixth grade and live my life from then until now without Tourette’s, sure it’d be more convenient. I could go to the movie theaters or to a quiet coffee shop or to, you know, a golf course and, and not be stared at. But even if given that opportunity, I wouldn’t even consider it because Tourette’s has played such a, a formative role in shaping who I am and how I navigate the world.

Carolyn Kiel: Mm-hmm, that’s so interesting. I’d love to learn more about like, how do you feel that your Tourette’s has shaped you over the years as a person?

Kevin Helgren: Yeah. It’s, it’s a good question. You know, I think about this concept of the adversity quotient, your ability to work through challenging situations over which you have no control through grit and resilience and hard work and determination.

And let’s, let’s be honest. Luck has a lot to do with it too. I was, you know, lucky enough to grow up in a very progressive and forward thinking household. So when something that made me different bubbled to the surface, it wasn’t a huge deal for, for my family and me. It was “all right, this is the reality. How do we work through it?” So I pride myself in a lot of ways on like my relationship with the adversity quotient and I think it’s, it’s shaped me in a couple of fundamental ways. One, and I, again, talk about this in the video. I think it has underscored to me the importance of spending time with people who are different than you, who look, act, think, pray, love differently than you do. And you know, that, that is especially important to me as a white cis man who has advanced degrees and lives in a place like San Francisco. I’ve thought a lot about the intersection of, of neurodiversity and queerness and what that has looked like in my life. In some ways very positive and in some ways very challenging. And if we wanna, you know, go down that path, we can. But I think in general, it’s underscored to me how rich of a life you can curate for yourself if you maximize the amount of time you spend with folks who are different than you.

I think also Carolyn, it’s equipped me with empathy and, you know, an inclination to care about people. And I really appreciate the notion behind your podcast, Beyond 6 Seconds. It takes no more than six seconds for a first impression to, to form, but there is often so much more to those first impressions than what meets the eye. And I think because I am always hopeful that people give me the benefit of the doubt and give me the chance to kind of reshape or add a little bit of color and texture to those first impressions, I always try to extend that same grace in the opposite direction. I try to, you know, abstain from jumping to conclusions or from writing someone else’s story in my mind before they have the chance to, to share it with me directly.

So I think you know, I, I think it’s, it’s again, underscored to me the, the power of surrounding yourself with folks who are different. It’s equipped me with a great deal of empathy. And it’s reminded me to, to give people grace and space and time to kind of land on me in a way that is true to themselves and not let preconceived notions or, you know, misinformed judgements, paint too, too harsh of a picture in, in my mind.

Carolyn Kiel: Mm-hmm. Yeah, it’s really having, I hate to say resilience, but that’s really what it is. You know, facing adversity and building that resilience and, and building your empathy as well is really, really powerful. And I think it’s great to hear you acknowledging the intersectionality of neurodiversity and all of our other identities. Because it really, it depends so much what your other identities are, whether you know, how the intersections between neurodiversity and race and gender identity and sexual orientation and, you know, economic background. That’s why so many neurodivergent experiences, they’re so different.

Kevin Helgren: Totally.

Carolyn Kiel: Which is why I’m trying to talk to as many people as I possibly can. Cuz it, you know, the more you talk it’s like, oh, there’s just so many stories and so many experiences to share.

So yeah, I, I would actually, if you’re willing to share more about the intersections between, you know, neurodiversity and the LGBTQ plus community that you’ve observed. I’d appreciate your insights on that, that’d be great.

Kevin Helgren: Yeah, absolutely. And I, I think you hit the nail on the head. None of these identities or lived experiences exist in a vacuum. Right?

I think I’ve found for the most part that queer folks are open to and receptive to and willing to discuss Tourette’s. I think that queer folks are, you know, I don’t wanna say more likely, but more likely than they are not to, they, they give me space and, and time and they don’t jump to conclusions. So I’ll give you a very like tactical illustrative example. If I walk into a room of queer folks here in San Francisco, for example, and I tic, there are probably fewer heads that turn at least after the first couple times than there might be if I walked into a, a room of non-queer folks in rural Texas. And I’ll use that as an example, because I’m, I’m from Texas. And I think what that boils down to Carolyn is, again, when you hold an identity or a lived experience that society has deemed as other or marginal or less than, you find a little more community and a little more comradery in folks who, who can relate to that. Right?

And again, I’m not trying to draw any parallels between living with Tourette’s and, you know, navigating the world with, you know, a certain color skin or, or anything like that because they’re very, very different and there’s so much intersectionality and nuance at play. But I think in general, it’s not a coincidence that, you know, when I moved to Chicago after undergrad, for example, for work, the vast majority of, of my friends in Chicago were queer people of color. And that’s because I felt most comfortable around them. And I probably felt most comfortable around them because they made me feel safe and seen and heard and validated. And my, my bet is they made me feel all of those things because they know what it’s like to not feel those things. Right?

And then you’ve got maybe a, a different side to this, which is the white cis gay man community, which I am a part of, all of those boxes I check. Right? And it’s a, a large community here in San Francisco. And I’ll be honest, there’s some toxicity that happens in the queer community as is the case in, in every community. But you know, the flip side to this very open, safe, inclusive community that I just described is, sometimes I have found that queer folks, and again, specifically gay white cis men, are a little more judgemental because they think when I show up that I fit this mold or this trope, perhaps, and then they discover that I’m different. Right? And I’m, I’m using such cautious language here because I want to make sure that folks see and get and appreciate the nuance. And that again, the queer experience is not monolithic. It is not universal. But speaking from my perspective, there are two sides to it .But my overall takeaway, especially as I’ve grown into my queerness and have, have, you know, grown to love and appreciate again, the empathy that it’s given me. I have really maybe appreciated and grown from the intersection of, of neurodiversity and queerness.

Carolyn Kiel: Thank you for sharing that. That’s really interesting to realize how all those different factors and identities can intersect and how different communities have different reactions.

So, I consider you a Tourette’s advocate now because you’re out there talking about it. So do you have like particular goals that you wanna achieve specific to your Tourette’s advocacy that you’re working on?

Kevin Helgren: Yeah, it’s a good question, Carolyn, one that I think about often. I think at a bare minimum, I will continue to speak openly and proudly and accessibly and confidently about my lived experiences with Tourette’s. At this point, you know, I’ve, I’ve had the chance to share a video. I’ve had the chance to speak on a handful of podcasts, at this point. I write openly about it on social media. I try to use the platform and the followings that I have across Instagram, LinkedIn, Twitter, Facebook to kind of normalize these sorts of discussions. So I think at the, at the very least, I will continue to do that.

But I’ve also thought about, you know, what it would look like to dream a bit bigger and to do something in a more institutionalized way. So you know, an idea that, that I’ve pondered is what would it be like to establish a nonprofit, and the nonprofit could be an advocacy organization that, you know, lobbies for more equitable access to mental health resources at, you know, local state and federal government. It could be a nonprofit that hosts a summer camp for kids with Tourette’s. It could be in the social venture space. So I’ve, I’ve tossed around a few ideas. And while I haven’t quite landed on what I want to do, I know that I want to do something long lasting. I want to do something that will, you know, outlast me, ideally.

And then the other side of this is, you know, my heart’s in the public sector, which is probably funny for folks to, to hear because I, you know, worked in consulting and I’m currently working in private equity and I went to business school, but I am energized by the public sector. I believe deeply in policy making and legislating as the most effective levers we have at our disposal right now to enact meaningful, real change in the lives of everyday people. And, and that is a process that I want to roll my sleeves up and, and engage in in the future.

So I’m, I’m still thinking about what I want my advocacy to look like. There’s a really big world that, that it might exist in. And then there’s also a very small, but equally important world that it might exist in. And that second world acknowledges that, you know, every conversation I choose to have with someone, it is frankly micro advocacy, right? And the same is true for everyone who is neurodiverse who chooses to put themselves out there and do the emotional labor and work needed to better other people’s understanding and bring them along in this, you know, confusing and complex journey that is you know, mental health and, and neurodiversity.

Carolyn Kiel: That’s great. Yeah, that will drive real change and leave a legacy as you, as you said. That’s awesome. Wow.

So Kevin, how do people get in touch with you if they want to, you know, we’ll put a link to your video, but if they wanna like follow you on social media or just learn more about your advocacy, where should they go?

Kevin Helgren: Yeah, absolutely. I appreciate your willingness to, to share the link. For better or for worse, I’m a pretty easy guy to get a hold of. You can, you can find me across all social media platforms, Instagram, Twitter, Facebook. My handle is at Kevin K E V I N Helgren H E L G R E N. I’m also on LinkedIn, so folks can shoot me a message there.

And typically what people will do is, if you reach out through one of those platforms and you want to have a more kind of prolonged discussion or, you know, shoot messages back and forth, I am happy to jump on a Zoom call or exchange emails. So again, my priority is to have as many meaningful conversations with as many people as, as possible. So I really appreciate your willingness to kind of help socialize that. Because it’s those sorts of conversations that wake me up in the morning with more excitement and enthusiasm than, than anything else.

Carolyn Kiel: Awesome. Okay, and I’ll put links to your social media in the show notes too, so people can find you through that. So that’s awesome.

Kevin Helgren: Excellent.

Carolyn Kiel: Yeah. Well, thanks so much, Kevin, for coming on the show and, and talking about your experience having Tourette’s and sharing your story and just talking about your advocacy. It was really great to talk with you today.

Kevin Helgren: Well, Carolyn again, I know I mentioned this at the beginning, but I’ve got a lot of respect and admiration for the advocacy that you are doing. The chance to connect with you and to hopefully share stories that resonate with the many folks who follow Beyond 6 Seconds, it’s, it’s an opportunity that, you know, flatters me and humbles me and that I’m really grateful to have taken advantage of. So a lot of gratitude for you and for the very important work that you are doing in this space.

Carolyn Kiel: Thank you. I appreciate that.

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