Celebrating Neurodiversity: Tourette's, ADHD, and More

Welcome to the series premiere of The UpTic! Today we’ll dive deep into life with Tourette Sydrome. From the challenges and the stigmas to the unique advantages it can bring to your life. Trust me, whether you're dealing with Tourette's or know someone who is, you won't want to miss this one. We're also getting into the power of advocacy and why it's crucial to open up about co-occurring conditions like ADHD. Strap in; it's going to be a meaningful ride!

Key Moments:

[0:00] Kick-off: Setting the Stage for an Eye-Opening Journey  

[4:13] Unveiling the Mask: The Reality of Tourette's  

[9:33] Amplifying Voices: The Power of Tourette's Advocacy  

[15:19] Double-Edged Sword: Tourette's Meets ADHD  

[20:04] Breaking the Silence: Advocacy Unplugged  

[25:16] Celebrating Neurodiversity: The Final Frontier of Advocacy

Links & Resources:

- NJCTS: https://njcts.org/ 

If you enjoyed this episode, follow the podcast, share it with your friends, and drop a review. It means the world to me, and it helps other people find the show. Until next time, keep being unapologetically you!

Transcript

Michael Leopold  00:00
I don't know what life would be like to not have Tourette I don't know what it would feel like. I don't know if I'd even feel like myself to be neurotypical, it would feel very different. I would never want someone to pity me for having Tourette. Because this is all I know. I don't know what life's like to not have. It's all honest. I don't know what I'm missing out on. I've had this for as long as I could remember. And we find ways to live our lives, given the cards we're dealt. I can't imagine what life would be like if I didn't have this. My advice to others is to take life day by day. 

Michael Leopold  00:36
Welcome to 'The UpTic', 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, I'm Michael Leopold, your host for the uptick. In this session, I'll be sharing my story and my vision for this podcast. I'm 29 years old. I grew up in a small town in Indiana, and I've been living in New York City for the past seven years. professionally. I'm a Human Resources consultant and I run a career coaching business where I help people find jobs that are aligned to their unique strengths and ambitions. I want to begin by talking about how my Tourette began. I was in kindergarten when my tics started, we didn't think much of it, then I would check a little bit around recess. When I was in third grade, the tics had gotten worse, I had a really bad head jerking tic that was my main check was this head bob that I would do. And I remember I was at an after school event and my head jerking ticket pretty bad while I was watching a movie with some other students. And I think I told the teacher that was there who ended up calling my parents I may have complained that I had a headache or that I was bobbing my head. And I wasn't sure why or I'm not sure what would made me express this because I hadn't really talked about it before. But it was getting really bad that night, I just couldn't stop off in my head. I just kept getting the urge to do it. And I just kept switching it again. My parents actually ended up coming to the school, they took me out of the event, I missed the rest of it that night and they took me home. They were just concerned because it involved my head, they wanted to keep an eye on me make sure there was no nothing serious there neurological or hushan, or anything like that. They wanted to keep an eye on me. And I told them that I had been doing this for a while but I just get this urge to bump my head up and down. And I don't I don't know why I do it or why other people don't do it. I didn't feel any real guilt around it or think it was necessarily weird. It was just, it was just something I did. And my parents took me to some doctors started with the pediatrician. 

Michael Leopold  02:47
We went through the whole list to the anti to is that had related went up to some specialist in Chicago at the Children's Memorial Hospital to rule out about to stop there had a bunch of tests done like a lot of people it was at trial and error process took about a year for them to rule out everything else. During that time. They clearly could tell that I had tics. After a year we could confirm that it was Tourette syndrome. I was also at that time diagnosed with ADHD and OCD. Actually the OCD eventually went into remission. Probably by some point in high school or so. I knock on wood. I haven't had any challenges with that in recent years, ADHD and tics though I have stayed. This was all third grade when I was getting tested. And then end of third grade, maybe beginning of fourth grade was when I was diagnosed with Tourette. 

Michael Leopold  03:35
It was 2003. And there were some people in my class, maybe one or two kids in particular, that were really bullying me, but I think it was just starting to get there. I remember one would tap my shoulder. I turn and look at him. And he would mimic my check the head jerking check or another check that I had. So I talked to my parents, I talked to my teacher, my teacher was one of the most supportive, incredible humans I've ever met Mr. Norris, he really instilled in me a love of learning and also a deep confidence. It stayed with me my whole life. She firmly believed in me and believe that I had this diagnosis. And that in no way meant that I had limitations. I could be what I wanted to be if I wanted to be the top student in my class academically or the fastest runner in my grade or the the best writer or any my interest that I could, we would take that devotion that commitment things took me longer to do it learning wasn't as easy for me it homework took me longer, but he helped me understand that I could still achieve those goals that I was going to set out for myself. One of the things he did that I really credited him on is he asked if I wanted to speak to my fourth grade class about my Tourette and do a little presentation. And I said yes, I've always loved public speaking. I don't know why I just I literally I love it. I can't get enough of it. It's empowering for me. It's fun. Like most people are afraid of public speaking surveys show people fear public speaking more than they fear death. And for me, I can't get enough people, the more in the audience, the merrier. 

Michael Leopold  05:10
But I have always been that way. When I was very young, I would introduce my mom to fellow shoppers in the checkout line at the grocery store. So when my teacher asked, Do you want to talk to your classmates about this, this could be a way to educate them and help them understand what you're going through so that they get it and that they won't think differently of it. And I said, Sure, let's do it. So I did some research on it. I remember I found some athletes and celebrities that had Tourette's and I talked about the definitions of it from the medical textbooks and I explained motor tics and vocal tics and the CO occurring conditions. That was the most formal I ever approached it in my early childhood there was in that fourth grade year and I'm happy to say I think that went a long way in preventing bullying that I after that really was not bullied or picked on for my tribe, which is kind of unique. Most people with a do have a lot of social hardships, bullying, things like that being excluded socially. For me it I don't think Tourette's was ever positive any of that. My friends, always my close circle of friends, I always knew that I had Tourette's. Enough people knew that I could disclose to others if I needed to. That wasn't an issue. But I do really attribute it to speaking in fourth grade about it. Being able to advocate for yourself at that young of age is it goes a long way in making things easier. To be clear, though, I wasn't fully comfortable with my Tourette's and I don't want to make it sound like I was. My relationship with my Tourette's has evolved a lot through 29 years I've been around here. For most of my life, I could talk about Tourette's, but it was always easier for me to advocate for others, it was a lot harder for me to talk about my own challenges, or to talk about my own tics and and what threats my experience personally is like, and there's a lot of reasons for that, that I'll get to in a bit. I want to talk about the worst year of my life, certainly the worst year for my tics, and probably also just the worst overall year I've had and that was eighth grade. I also started advocating for people with Tourette syndrome when I was in eighth grade in the midst of all the challenges I was going through. And I want to stop and pause here for a second to give it some context. Eighth grade was the toughest year I had my Tourette's was that it's worse, I was twitching hundreds of times a day. I've always had mostly motor tics, I do get some vocal tics here and there more so minor or Scible vocal tics less over the complex vocal tics by motor CheckStyle are very complex. I have a mix of simple and complex motor tics. But at the time, I had a very violent head jerking tic where I was thrashing my head from one side to the other, I might do that 200 times in a day, I was tensing my arm muscles my entire arm up to my hands and fingers. 

Michael Leopold  08:02
And I would do that so much just tensing it and then would hold and then release. I had a self injuring check to punching myself in the stomach and solution nerve irritation from these ticks that I would randomly get these electrifying surges of pain down my arm during the day. I also did have some symptoms of whiplash from the aggressive head jerking. I remember getting home from school in eighth grade, and I would just lie down, I'd put a heat pad on my neck on my arm on the muscles just to ease the tension and and really loosen the muscles they were so inflamed. I remember my hands and arms aching so much from the tics that I couldn't hold a pencil or tight, I would be at home dictating my homework to my parents and they were typing it just the typing or writing myself was really painful for a period of time in eighth grade when those ticks got really bad. And that's on top of the ADHD. Homework is taking me longer to complete. I had to share things different times or especially in math and your concepts presented in different ways before it really clicked and I understood what I was doing. I had the privilege of having a dad was an engineer and great at math. So he would look over my math homework. And if I had questions or an issue, I was not understanding he would re explain it to me and teach it and he was incredibly patient even when I wasn't when I was getting very worked out. Also, this was the peak of middle school so I had all the usual stressors of trying to sit in feeling different feeling like your body is changing. All of that was going on as well. And I didn't like talking about my Tourette's. I think I always had this idea that if I just told my closest friends my closest innermost circle of friends that I had Tourette's and I told them that they should feel free to disclose that news to anyone on a need to know basis that then I can wash my hands clean.

Michael Leopold  09:55
I'm good. I'm done. I don't have to talk about it. And I'll never have to worry about oh We are about people saying things behind my back or stereotyping or any of that stuff because I have a solid friend group and they get it and they can do my battles. For me. It's not like that I learned going through childhood that just you have to be your advocate and that having a strong group of friends is crucial. That's extremely important. You still have to be the one to talk about it. Because a lot of times, just given the sensitivity of it, it's a diagnosis. It's confidential. People don't want to talk about someone else's diagnosis. That's not their story to tell it's yours. Disclosure is something that it's not required, it is your choice. But I'm here to say that there are a lot of benefits to telling your story and to making that choice to disclose. I would also say, though, that just because you choose to disclose doesn't mean you disclose all the time. There are still times today where I find I am having a tough day or I'm busy or whatever the reason, and someone sees me Twitch, I just Oh, you know, yeah, there was nothing, you know, just say something else inside of it. We don't always have to be the perfect advocate. We have to be capable advocates. We don't have to be perfect advocates. And I think that's a theme that I've learned over the years. That's helped me grow more in chat with talking about my Tourette's. 

Michael Leopold  11:15
Going back to eighth grade. It was in that climate that I was approached by the Secretary of the Indiana chapter of the Trade Association of America. She asked if I wanted to be a part of this new program that the organization was launching, it was called the Youth Ambassador Program. And they would be sending groups of teens from the various states to Washington DC for training. They would teach us how to be effective trade advocates. We learn the latest research and medical literature on Tourette and we would then be sent to schools and hospitals and nonprofits in our area. And we would educate the public on Tourette. And I don't know why. I said yes. In preparing for this podcast, I asked my parents as well, if they could think back to when I was in eighth grade. And I was asked to be a part of the program to become a youth ambassador. And my parents were just as without an answer as I am, I think it was a combination of things. One is that I come from a family of volunteers and community leaders. And I grew up seeing that that was always very normal to me. It was always a given to me that I would devote a lot of time in my life to service. And that was just something you do in addition to school or in addition to your job, you have your thing your nonprofit your cause. 

Michael Leopold  12:31
Another thing is I always loved public speaking and maybe I saw this as an opportunity to help others in an area that I had a natural affinity. I think it appealed to me that I wouldn't have to talk about my own Tourette's quite as much as I'd be advocating for someone else that may have made it a little bit easier. Honestly, it just felt right. Being an advocate felt like something that could be empowering. I think I liked the idea of being able to educate others on Tourette even if I wasn't always comfortable talking about my own experience with it. Whatever the reason, I said yes, and was part of the first class of National Youth Ambassadors for the Trade Association of America. What's interesting to me is that even after I became a youth ambassador, I still had trouble in some situations, disclosing my tes and talking about my own experience with it. As much as I loved helping other people with it, mentoring them giving advice, I found it was a lot easier to give a speech about Tourette's on behalf of someone else who wasn't me than it would be for me to talk about my own experience. And that's something that stuck with me. Through my years. Being a youth ambassador, I did lots of trainings, it was a really big thing for me in those years eighth grade ninth grade 10th grade through high school, after high school took a little bit of a break for my college years, I got involved in some other extracurricular activities and other causes. 

Michael Leopold  13:57
But what I found was even in college, I would disclose my Tourette's to my closest friends. But I had trouble talking about it with other people. I think I internalized some stereotypes about it. And I was concerned that other people might think less of me when I think I was dumb. I had this idea that if I was going to be a Tourette advocate, I would have to be the perfect trade advocate that I would have to understand my Tourette's really, that the whole cliche idea of overcoming your disability that I would have to be me, I'd have to come to terms with it, be at peace with it. I couldn't have bad days with it. Or if I did, I immediately put it into perspective. It's okay, I get over it. I had a very unrealistic idea in my head of what an effective Tourette advocate looks like. And I think that's what made it so hard for me in my childhood to talk more about my own Tourette's. I always told people, I have Tourette's, these twitches I'll do I can't control them. Most of my friends just ignore it unless you have a funny joke and then I'll laugh with you. I actually memorize my disclosures. Your speech. And I found that I could talk about my Tourette's that way. And I would normally couch it by saying, if you have any questions, I'm happy to answer them. I love to talk about Tourette's, but I'm not going to bring it up. In most cases. I'm not going to volunteer the topic. But if you do have questions, please don't hesitate to ask me them and I'll talk about it. That was always the way I approached it growing up. 

Michael Leopold  15:21
My relationship with my Tourette's have evolved a lot over the years. Like I said, I never felt fully comfortable with it until maybe a few years ago. And I think a lot of what made it hard for me to identify with the Tourette's and and really to talk about my personal experience with Tourette actually had little to do with Tourette specifically, it had more to do with other challenges. I had internal challenges around perfectionism not wanting to be judged not wanting to look like the wrong quote unquote, kind of Tourette advocates. I put a lot of pressure on myself and I faked a lot of confidence. That phrase, fake it till you make it, I took that to the extreme and in a really unhealthy way. And it led to me being a less authentic version of myself. And a few years ago, I found an incredible doctor, she's a psychiatrist who's also trained in therapy. She has a specialty in the exact mix of conditions that I have, and it's through working with her or my weekly therapy sessions that I've really come to accept and embrace my Tourette and also the CO occurring conditions with it. I found that as I've learned to tackle some of those deeper issues and insecurities I had, it's also led to me being more authentic and also to embrace my Tourette more. Another way to say that would be as I've learned to tackle some of the deeper issues I had around being fully authentic. 

Michael Leopold  16:45
I've also been able to embrace my Tourette's more. I think I also with the CO occurring conditions I mentioned earlier, I had ADHD. I was actually more afraid of talking about my ADHD than my Tourette's. I think Tourette's there was something kind of unique about it, but Tourette's, I could speak to the ADHD I really growing up, I think I internalized some stereotypes about it. Whenever I did have to disclose even if I was just explaining why a homework assignment took me longer, I would blame it on the Tourette's, I actually wouldn't mention the ADHD. I kind of packaged all of the CO occurring conditions under the Tourette label. And that's how I conceptualize them. Because there is a stigma with Tourette and there's also a stigma with ADHD. I was even less equipped to handle this stigma around ADHD. I didn't internalize it in a lot of ways. People say that you never really overcome something like Tourette's, a condition like that, and I agree is an asset to me. It is also an ongoing challenge, and I didn't fully become comfortable with it until adulthood. 

Michael Leopold  17:53
Tourette is dynamic, it changes it evolves and we grow with it. Our relationship with our Tourette grows as well learning to live with Tourette's and also embrace it is a lifelong journey. And that is something I wish I could have told myself in eighth grade. And I'm in a much better position now, as having had more years of going through this meeting more people with it. Also the years of therapy, which has helped. Then finally just years of seeing how much Tourette can benefit me. There's a lot of assets to having Tourette's, we talked about the common ones developing apathy, grit, resilience, a lot of conditions, any kind of hardship can imbue those traits in a person. It's funny that I used to be so afraid of the ADHD label, because I now see my ADHD is one of my biggest assets. A colleague at work once described me as an idea generator, my brain is able to think of lots of ideas very quickly. And I find it work when there's a challenge or a question or a proper a or something, I get an assignment. Immediately my brain starts thinking of the end result, I can come up with lots of ideas quickly, I find I can also be inundated with detail. And then I can zoom out and summarize what I'm seeing and I can explain the big picture to someone very well. My brain just works differently.

Michael Leopold  19:20
I firmly believe that things like like ADHD, autism, dyslexia, that these are only clinical disorders in a world where we make them that way. You know, in a social model, where we built this world where if you have some of these things like ADHD, it is harder to pass and we live in a neurotypical world. But if we didn't live in a neurotypical world, none of these things would even need to be diagnoses. I firmly believe that they are just different kinds of brains. There are different ways that your brain can work. To its credit, my Tourette and ADHD has also made me a witty person. That kind of fast paced spastic quick on my feet, brisk reflexes. It's also enhanced my sense of humor. More, I can tell a quick joke on the fly. My brain just works fast. And over the years I've come to really love that about myself. There's that age old question about if the magic cheer for Tourette was invented and it's as simple as popping a pill that has no side effects. Would you take that magic pill and share your Tourette something I have found informally asking this question of people is you'll find some people that will say yeah, I don't want to take the pill right now. In my in informal, anecdotal, non scientific experiment of this, I have found a majority of people say no, that they would not take the pill that there is something that is core to us and having a condition like this. I don't know what life would be like to not have Tourette I don't know what it would feel like. I don't know if I even feel like myself to be neurotypical, it would feel very different. I would never want someone to pity me for having Tourette. Because this is all I know. I don't know what life's like to not have. It's all honestly, I don't know what I'm missing out on. I've had this for as long as I could remember. And we find ways to live our lives, given the cards were dealt. And I can't imagine what life would be like if I didn't have this. 

Michael Leopold  21:16
My advice to others is to take life day by day, knowing that you don't have to have it all figured out. Even when it comes to your relationship with your Tourette's. If you're an advocate, that's great. We need more advocates. It doesn't mean that you've overcome your condition or even that you fully understand your condition. Tourette's is lifelong, and it is dynamic and your relationship with it may change as you grow and evolve and go through life. Being an advocate can be tough. I'm thinking about some of the insecurities I had earlier on that were a challenge to me and things I thought were a challenge. I felt that in order to be a good Tourette advocate, I had to be perfectly comfortable with my Tourette. And I wasn't I felt weird about it growing up. As I got older, I found myself embracing it more. And that had less to do with me understanding anything more about my Tourette's or my relationship with it. It had more to do with me digging into some of the deeper issues that I think we're contributing to it, things around being vulnerable, and to put yourself out there. Even if you get laughed at even if people don't like you. That's the only way you can truly become yourself your true authentic self. 

Michael Leopold  22:41
So why do I stay involved in Tourette advocacy, I became a youth ambassador in 2008. That's when I was in eighth grade. I've been involved in Tourette's work ever since. There's a few reasons that come to mind. One is the people and the camaraderie. I've met some incredible people through this community and they've become lifelong friends. I also feel that the cohort of advocates that I met, you know, my generation, my peers of advocates, we are addressing the challenges that we experience ourselves as we experienced them as we go through life. When I was younger, so much of the programming around Tourette's was geared toward children and some teachers. It was also geared to parents of newly diagnosed children, there really wasn't much out there to help adults and support adults with Tourette. There were also statistics out there around Tourette's going into remission or subsiding in many cases. And so I think people just it was under diagnosed in adulthood. And also adults either many had found ways to cope with it, or in some cases, it had gotten better. And maybe they were less in need of services and formal programming around it. But what we've learned is that there are a lot of adults who have it and programming gaps that aren't being met. And so what's really exciting and staying involved in Tourette's advocacy is that I am part of the generation that's building those supports for adults. As we need them, we are building them buy in for us. And the hope is the foundation we're building will be passed out to the next generation so that as time goes on, there will be people age 567 getting diagnosed with TMS that will have resources that are geared to them for the rest of their lives. And you're not going to age out of direct programming. 

Michael Leopold  24:24
There will always be resources that can help you and now the next frontier is around Tourette understanding Tourette in different communities. So rural communities, low income communities, people of color, and other countries. That's really the next frontier is how can we build more inclusive holistic advocacy and inclusive holistic understanding of Tourette Syndrome? Because the experiences of people with Tourette is very different, not just based on your tics and your co occurring conditions, but also your socioeconomic status, your family, the culture, you're in religion, all of that can play a role as well. And I think understanding That and promoting the nuances of that is really our next big frontier. We are doing a great job working with children with TLS. And now we're moving on to some of these other challenges. 

Michael Leopold  25:12
So why do I stay involved in Tourette advocacy? It just feels natural to me. I like helping others. I like speaking I like feeling that I'm giving value or service to others. And I do have a personal affinity here. I have Tourette and ADHD, and it's very natural for me something I can speak to personally and give back. So now I'd like to move on and talk about my vision for this podcast. My vision for this podcast has three pillars. The first is to elevate the unique stories of adults with TS as this is a group that often gets less attention to read is idiosyncratic meaning that the manifestation of it is different, and every individual person with it, we all have different collections of tics, we all have different combinations of CO occurring conditions. And there's a lucky 10% That doesn't have any CO occurring conditions. But that's not to say they don't have challenges. Everyone with Tourette is unique. There's a saying that if you've met 10 People with Tourette, you've met 10 People with Tourette you've never fully seen the scope of the condition. 

Michael Leopold  26:18
The only way to understand more of that full scope is to meet more people with it to highlight their stories to share and understand their stories. Their perspective their experiences. Sharing diverse experiences is crucial to understanding Tourette. The second pillar is to unpack the myths and stereotypes around Tourette around co occurring conditions around neuro divergence. This is one that I think our community has done a great job already with. I think there's a lot of additional myths and stereotypes that are getting in the way of neurodivergent people having full inclusion, we talk about a world where we can tick freely. I remember in 2008 going to my first Tourette Association Conference, and that was the first time I'd ever been in another room with other people that had Tourette. It was so liberating that I could do my most embarrassing, socially awkward tics and it didn't matter. No one cared. No one was staring, no one looked or said anything or I felt I could truly kick and be my true authentic self. And there was something very freeing about that. I won't stop until we have built that world where those of us with ticks hand tick freely, I want people to feel that same level of psychological safety in public as we feel when we go to a Tourettes camp or to a conference and we're around other people. When we can bring that same level of understanding and just have people be cool with it and get it that will have been achieved milestone. That's what we're all working for. 

Michael Leopold  27:57
The end goal is a world where we can tick freely. The third pillar is to highlight opportunities for further advocacy and inclusion around these topics. Tourette neurodiversity co occurring conditions, especially as it affects adults. I'd like to talk to people who work in different capacities, such as in the workforce, how can we include more neurodivergent people in the workforce? And what are some of the barriers that are preventing them from having full inclusion in the world of work? Also in the medical community, there's a lot of stereotypes even among nurses and doctors around Tourette and how to treat it and what a typical Tourette patient looks like. And I think we can bust some of those myths. So I think this will be an interesting journey, meeting different people sharing different experiences really elevating diverse perspectives on Tourette syndrome, and I'm excited to be launching this podcast. Thank you for listening and stay tuned for our next podcast which will be our very first interview. 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.

Michael Leopold  29:12
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