Episode 188: Fragile X and ADHD – with Sarah Brown

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.

On today’s episode I’m speaking with Sarah Brown. Sarah’s a New York City based podcast producer and editor. She’s worked on shows such as Minority Corner, Get on Up, #Matter and Fixing the Future. She also produces her own show called The Queerience, which is a show all about the LGBTQIA+ community. Sarah, welcome to the podcast.

Sarah Brown: Hello. Thank you so much for having me. I’m excited to be here.

Carolyn Kiel: Yeah, so excited to have you here. We will be talking probably a little later about your podcasting work and all of the great endeavors that you do there. But you’re also here to talk about your own story around your own neurodivergence and where that comes from. So I understand that you learned at some point in your life that you have Fragile X syndrome.

Sarah Brown: Yes.

Carolyn Kiel: For those who aren’t familiar, what is Fragile X?

Sarah Brown: Well, it’s like a genetic mutation that, it’s funny cuz most like. Things or disorders or whatever, they mainly like affect women as we know, or anybody with birth giving parts like, but this one affects men worse. So in women it’s a little more milder. I have a more milder case. I’m gonna read like the true definition. So it’s basically a genetic disorder that’s caused by changes in a gene called Fragile X Messenger, I am gonna pronounce this wrong, Ribonucleoprotein. And basically how, like my mom would explain it to me when I was younger and like I didn’t understand what was going on, it’s sort of like your X chromosomes are broken, in a way. So I have it and my brother has it, but it manifests in him as more severe. As more of, in terms of like intellectually and like being able to function.

Carolyn Kiel: I was doing some reading on Fragile X syndrome and just learning so much about it. And I do remember that it can manifest in many different ways. For some people it manifests as intellectual disability or

Sarah Brown: Mm-hmm.

Carolyn Kiel: Other types of disabilities or just characteristics. So how does it manifest for you?

Sarah Brown: It manifests for me as ADHD, especially like the hyperactive part. Like when I was younger a lot of my teachers would be like, she’s too disruptive. She’s like, you know, distracting others in class. And that was because of the ADHD. So that’s how it is for me at least.

Carolyn Kiel: How did you find out that you had Fragile X syndrome? I don’t know if it’s something that you’d routinely test for or did

Sarah Brown: oh yeah.

Carolyn Kiel: ADHD come first? Or how did that work?

Sarah Brown: Yeah, yeah. Well, no, you’re right. It’s definitely not something that was routinely tested for in the nineties when, you know. But my mom has been working in disability services like my whole life. And when my, I think like, once my brother was maybe two or three, we started to notice like something was different, and he got tested, and that kind of prompted me to get tested. So like by the time I was six I was taking medications and stuff like that. And I just remember being in a room, like being asked to like, build blocks and look at a computer screen with like a blinking light.

And we later figured out that I believe my grandpa had a milder form of it and passed it on to my mom. And my mom like, didn’t know she was a carrier of it, so she passed it on to me and my brother. And my sister is a carrier of it. So that’s kind of how we found out. Yeah, just through like my brother having it and us getting tested.

I think maybe nowadays people test a little more for things like that, but in like, it was like 1995 when I was six years old, and they were really like testing, like not a lot of people really did that, I feel like, you know? It wasn’t really like well known as much as it is now. People weren’t even using the word neurodivergent.

Carolyn Kiel: Oh! Yeah.

Sarah Brown: People had never even heard of that word. Like Yeah. Yeah. So a lot has changed. Yeah. But that’s how I found out, I guess in a nutshell.

Carolyn Kiel: Wow. As I was reading up on it, I read on a website, and you can let me know if this is accurate, but

Sarah Brown: Yeah!

Carolyn Kiel: I think Fragile X is one of the few like clear genetic ties that can manifest as different kinds of neurodiversity.

Sarah Brown: Mm-hmm.

Carolyn Kiel: As, as we say, most neurodiversity, there isn’t like particularly one gene that causes, say, autism or ADHD or dyslexia, anything like that. But Fragile X, it seems like, as you said, can manifest differently in different people and I guess one of those manifestations could be ADHD, like it is for you. Yeah, that’s, that’s really interesting. And that was something I didn’t know about at all until I, I read that.

Sarah Brown: Oh yeah. So basically like, when I have kids, if I like give birth to kids, it’s like, I think it’s, as you have more kids, like the percentage goes down, depending on like what you have or like what their genetic makeup is, they’d have it to, and you pass it on to your kids. So there’s a whole like testing thing for that. But yeah, it definitely manifests itself differently in everybody. And I, yeah, I don’t really know a lot of people with it, actually. I only know like me and my brother, so I’m still kind of like making my way through the community, I guess.

Carolyn Kiel: You mentioned that it manifests mainly for you as ADHD. But I guess, what was it like growing up with Fragile X? Like did you have other manifestations of it aside from ADHD?

Sarah Brown: I mean, definitely fidgeting. I mean, right now I’m playing with my slime. Just, as like a focus thing. Um, I feel like that’s really relatable on this podcast. I dunno.

Carolyn Kiel: Yeah.

Sarah Brown: Yeah. A lot of this is interesting, but like it manifests it for me we notice in my joints. I have very like, loose connective tissue in my joints, which is weird. So growing up, like I would always walk inward.

Carolyn Kiel: Mm-hmm.

Sarah Brown: And yeah, growing up with it though, like not a lot of people really knew what was going on, so it was sort of like I was completely dependent on my mom. I remember, you know, in elementary school having to go to the nurse’s office around like lunchtime maybe, to like take Ritalin. And being like six years old, not really understanding how to like, swallow a pill or like what this medicine was gonna do. Yeah. And not really understanding like why I couldn’t really like look people in the eye or focus at all or understand why like I was so bad at math or whatever. But I honestly, I don’t really think I identified with it a lot. Like I kind of just felt like I was a normal person. I had friends, I had like a so, as much as someone can have a social life in elementary school. But yeah. You know, it wasn’t, I didn’t really like talk about it a lot with my friends cuz it just like never came up. Nobody was like, why are you so weird? Because I think maybe all my other friends were weird too, so it was like, yeah.

But yeah. Growing up, I had what’s called an occupational therapist.

Carolyn Kiel: Mm-hmm.

Sarah Brown: Who would work with me in elementary school. And we would like, do certain things and she would kind of even just like teach me how to hold a pencil correctly and get like good grips and stuff, things like that. So it was just a very, it was a very like, interesting thing, just understanding that like I was a little different and I was like gonna be learning a little differently than others. As I got older and like obviously, you know, school would get harder. I would be in the resource rooms, or they called it special education at the time, but they do not do that anymore because that would be problematic. But yeah, like all through high school and stuff.

And yeah, I think it took me a while to like come to really grips with it and understand that like, oh, like you’re different because of this. Because of this and this, like you’re learning differently than other people. But also like not being around a ton of people who are also like that. You know what I mean? I feel like back then not everybody was getting diagnosed with ADD or ADHD, like people didn’t really know what it was.

Carolyn Kiel: Mm-hmm.

Sarah Brown: I remember even in, like, just a few years ago, one of my roommates was like, “that’s fake. Like that’s not real.” And I was like, “OHH kay.” Like, you know what I mean? So I think yeah, that’s kind of what it was like, just, you know trying to navigate that. But you know, I think I was very privileged in that my mom knows so much about it and had studied it and understood it, that I kind of had her to sort of guide me and like, help me in certain ways, you know?

Carolyn Kiel: Mm-hmm. Yeah. It’s true. I guess it’s really only been pretty recently that people have been talking more openly about their neurodivergence and kind of finding their communities. Cuz with the internet and especially with social media, where you can much more easily find people in any part of the world who share parts of your experience. It’s really pretty amazing.

Sarah Brown: Oh yeah. And finding the right community for you. Like on Discord!

Carolyn Kiel: Yes, yes. We met on Discord of all places, and that’s something that I’m pretty new to, but there’s a, a really, there’s a really cool podcasting community on Discord that is really great for sharing information and meeting a lot of great people.

So I guess after school, like, did you know what kind of work you wanted to do?

Sarah Brown: Because of like the ADHD, I always wanted to like run around all the time.

Carolyn Kiel: Mm-hmm.

Sarah Brown: And I wanted to like have a big personality and be like crazy. So I got into theater.

Carolyn Kiel: Oh!

Sarah Brown: Of all things! So I was a theater kid. Yes. And then like the pandemic happened and a bunch of other stuff happened and I started, and I had already had a podcast before.

Carolyn Kiel: Mm-hmm.

Sarah Brown: But I decided to just kind of like, make it a career. One of my friends, James Arthur M. who created Minority Corner Podcast. He’s amazing. He got me my first like podcast editing job, and from there I was like, oh, I should do this as a career. Like this is something I should be doing. So now that’s what I do!

Carolyn Kiel: Very cool.

Sarah Brown: Yeah.

Carolyn Kiel: I’ve done some editing on my own podcast and it’s really something I think people either like really love it or would really outsource it to somebody else. You love it or you quote unquote hate it. So it takes me such a long time, so it is really valuable to have someone who, who specializes in editing and putting all that together.

Sarah Brown: Oh, yeah. And I think it’s especially good for people who are maybe neurodivergent. And I think it helps me because I have ADHD that I can almost just hyperfocus a little bit and just be like, oh, this is what needs to get done. Cuz it’s like, it’s visual and audio at the same time. So that’s, I think why I really like it. And I’m also able to not do other things, but it’s such like a, it doesn’t feel tedious. I guess that’s probably why I like it so much.

Carolyn Kiel: Yeah. Yeah. I was thinking about the hyperfocus, cuz I know when I’m editing it’s, you know, hours go by and it’s like, I don’t think I even got up from this chair in like a couple hours.

It’s like, yeah. You get absorbed in it and you know, if you like it, it’s really, it’s really fun and rewarding.

Sarah Brown: Oh yeah, absolutely. Especially if the content is good and you’re interested in it.

Carolyn Kiel: Yeah. Now you’re also a podcast host. You’re the host of the Queerience podcast.

Sarah Brown: Mm-hmm.

Carolyn Kiel: Are you currently the host of that?

Sarah Brown: Yes, yes. Yes, I am. We talk to people in the LGBTQIA+ community. I’ve talked to, let’s see, reverends, doctors, advocates, activists. Especially right now, you know, our community is under attack, especially the trans community. And we’re always trying to shine a spotlight on people to more educate people and to help people understand what’s going on and who we really are. And, because this is a neurodivergent podcast, a very, very big percentage of trans and non-binary folks are neurodivergent.

Carolyn Kiel: Yeah.

Sarah Brown: Yeah. I don’t think there’s been a ton of like, studies about it, but that is something that gets talked about is like the correlation between neurodivergency in the community.

Carolyn Kiel: Yeah. I’ve heard that and I’ve, I’ve seen that as well.

So what kind of, do you have people on to like, share their stories or do you talk about current events?

Sarah Brown: Yeah. I bring them on to share their stories. Like I had someone from the Queer Detainee Empowerment Project, where they help queer people who are detained in other countries for being queer. I talked to some doctors from the Queer Health podcast about, you know, accessibility to healthcare for the queer community and how much it’s changed and what access people have now, and how we can give people more access. And I’ve talked to a reverend who was helping bring over trans people from El Salvador who were seeking asylum.

Carolyn Kiel: Wow.

Sarah Brown: So I really, I think that kind of all has to do with like current events, you know? So I really just like to hear people’s stories and hear like what they have to say and what they’re doing within our local community to try and like, you know, help people make the world a better place. Educate people, stuff like that.

Carolyn Kiel: That’s really powerful, you know, especially bringing those stories from all different parts of the world.

Sarah Brown: Exactly. Oh yeah. It’s very, very powerful. And yeah, it’s very interesting and it’s an education for me too. I’ve learned a lot. And you know, being in this community, you’re constantly learning and you constantly need to educate yourself. Even being in the neurodivergent community. I didn’t really know about that word for a while until very recently, and I just started using it. I’m still even learning about like, you know, what my ADHD has manifested itself as, and even my Fragile X, like today, and still learning what that means for me.

Carolyn Kiel: Mm-hmm. There’s so much to learn and yeah, I’m always learning.

Sarah Brown: Yeah. The more we’re learning about it and the more we can educate ourselves and help others, that makes it just like better. Like mental health is finally at like the forefront of a lot of the conversations that we’re having, which is so important. Especially for like the youths, the little babies, you know, who like are growing up in this crazy, crazy, insane, the world is collapsing around us time. We’ll look back on this and be like, remember?

Carolyn Kiel: Yeah. It’s a really wild time, so very important to focus on mental health, especially now.

Sarah Brown: Yeah, of course. Of course.

Carolyn Kiel: Yeah. Yeah. And, and you mentioned that you’re still learning about your own, you know, manifestations of what Fragile X looks like for you, what ADHD looks like for you. Do you feel like that’s changed across your life, in terms of how you experience it from like, when you were a child versus now as an adult?

Sarah Brown: Oh yeah. I think when I was a kid, I really didn’t like care at all. I was just like, “okay! Bye! I’m gonna go like, eat worms or something!” Like, you know what I mean? Oh my gosh, if my mom listens to this, she’s gonna be like, why are you saying that on a podcast? Um, but now I think that like I’m older, I’ve kind of grown up a little bit. I’ve really taken the time to come into my own and focus on myself and see like how I can improve, maybe I shouldn’t use that word improve, but how I can live with my ADHD instead of trying to like, get rid of it or look at something as like it something that needs to be cured or something that’s like wrong with me. I think when we stop thinking about it like that, it’s easier to deal with, it’s easier to sort of cope with.

Like the other day, I knew like if I didn’t do my laundry right away when I got home, I wouldn’t do it. And I was like, because of that, like, I have to do it right now. Like I have to go grocery shopping right now or it will not get done. Or like the fact that we have like a chore chart in my apartment because like all of us, me and my two roommates, we all have ADHD and like if we don’t see it, if we don’t write it down, like it won’t get done. And little things like that that I’ve come to learn about myself, like if I’m remembering it now, I need to do it now, otherwise I’ll forget about it.

Like having a routine is really important. Like little things just like making my bed every day and like knowing what I’m gonna wear the next day and stuff like that really helps. Yeah, just little things like that, like just going through the process of like growing up and like learning that I have to do certain things to make my life easier about like, living with this. So yeah, and even like buying slime so I can like have this little like thing to play with in my hands while I’m talking on a podcast, so I’m not like, trailing off or whatever. Just little stuff like that, that I’ve had to learn for myself.

You know, but I’ve had a lot of help. I’m not on this journey alone. But yeah, I mean, the fact that I’m able to be independent, make my own money, like live on my own. Little things like that are just like really important to me, that I know some people with Fragile X are unable to do, or with ADHD are just unable to do. And there’s nothing wrong with that. You know, we’re all on this space rock together, flying, and we all have to do it our own way. But I know for me, like certain things, like if I don’t do my dishes like right after I eat, I won’t do, you know, just like little things like that that I’ve come to like learn about myself through all of this.

Carolyn Kiel: The point of learning about yourself and knowing what works for you and it probably in some ways trial and error just to understand, okay, this helps me get through the day and this helps me do what I need to do and yeah, I think everybody has to, to learn that for themselves. Mm-hmm. And sometimes, you know, sometimes it takes a while, it’s a bit of a discovery.

Sarah Brown: Oh yeah. Absolutely it is. And especially, You know, in this world that we’re living in when so many more people are vocal about being neurodivergent and it just feels so good to know that, you know what I mean? Cuz we didn’t really have that growing up. Not everybody was vocal about it. If you had ADD or ADHD, you were a troublemaker. It wasn’t like, oh, you need help. It was like, oh, you should be put in detention or something. You know what I mean? I see it changing, but I also see where a lot still needs to be learned by others to better understand people.

Carolyn Kiel: Yeah. Definitely. Yeah. A lot of the people I talk to on this podcast talk about growing up and even going through parts of their adulthood, really feeling like they were the only person who did THIS or thought THAT way. Or like, were sort of the only one of their kind. And it’s just so interesting to see people connecting and finding wider communities of people. Certainly for, you know, the neurodivergent community, even the ADHD community, and hopefully also for the Fragile X community.

Sarah Brown: Yeah. Mm-hmm. Well, after my freshman year of college, I was on like academic probation. So my mom sent me to this school called Landmark College. It’s like a school for people with learning disabilities and, or I shouldn’t say, there are like people who are neurodivergent. So like there I kind of found a community with other people who had ADHD and like who had it worse than me, who like, I felt, you know, I was like, oh my goodness. Like there’s other people like this. And it was probably one of the first times I was like solely around people who were sort of similar to me and I was like, oh my God. Like it was almost too much. It was almost like, you know, it was like, wow, this is crazy. Like this is insane.

But yeah, totally. Like you grow up kind of feeling like you’re the only one, especially with something like Fragile X that, like literally no one, there’s still people who have literally no idea what it is.

Carolyn Kiel: Oh, yeah!

Sarah Brown: People like are still learning about it, finding out new things about it. Like it’s a still, I guess kind of like a new thing, I don’t know. But you kind of grow up thinking like no one really gets it because it’s not really talked about. It’s definitely like an interesting thing to be on here, like talking about it and being like, yeah! When you’re sharing your story about having this, it sort of feels like a lot of people are kind of going through the same thing.

Carolyn Kiel: Yeah.

Sarah Brown: If that makes any sense? Like a lot of people who may have shared like, the same experiences who were like, around my age, like, you know, once again, like being a product of our childhood in the nineties, not a lot of people like knew about it, but yeah.

Carolyn Kiel: Well that’s, that’s really cool. And it’s great that you’re sharing your story about it because then, you know, the, the more that we hear people talk about their experiences with different, whether it’s neurodiversity or disability or you know, any other kind of conditions or, or experiences. You know, then it can help us really feel like, you know, we’re not the only ones.

Sarah Brown: Oh yeah. Of course. Absolutely. Yeah. I mean, now there are definitely a lot of people with ADHD.

Carolyn Kiel: Oh, yeah.

Sarah Brown: I don’t really hear a lot about, I guess ADD and ADHD. They’re different.

Carolyn Kiel: I think they changed the diagnostic criteria now, so it’s still, it’s still very confusing even after they changed it, but,

Sarah Brown: oh yeah.

Carolyn Kiel: I think that’s what happened. It’s hard to keep up.

Sarah Brown: Mm-hmm. Yeah.

Carolyn Kiel: So I think it’s great that you’re sharing your story and I appreciate you coming on my show and talking about your experiences.

Sarah Brown: Thanks for having me. This was fun. This was nice.

Carolyn Kiel: It was fun. So how can people get in touch with you if they wanna like listen to your shows?

Sarah Brown: Let’s see. Well, on Instagram and Twitter, it’s the Queerience podcast. And you can listen to it on anywhere you listen to podcasts. It’s on Spotify, Google Play, all the usual suspects. And I’m on the Discord podcast groups. You can also find me there, where we’re all just chilling.

Carolyn Kiel: Cool. I’ll put some links to your podcast and your social media.

Sarah Brown: Oh yeah!

Carolyn Kiel: So people can connect if they want.

Sarah, thank you so much for being on the show. As we close out, is there anything else that you’d like our listeners to know?

Sarah Brown: I think I would leave it with advice of just like, be able to accept help. And know that it’s okay. It’s okay to be different, everybody. It’s okay to be yourself and being yourself and loving yourself is a journey and that’s okay. Like I said before, we’re all just on a flying space rock thing going through the universe. So you know, ask for help. Be yourself.

Carolyn Kiel: That’s great advice. Yeah. Asking for help. Definitely important. And of course we all need to be ourselves and share our stories. Hey, thank you so much, Sarah. It was great talking with you today.

Sarah Brown: Yeah, thanks so much for having me. This was great.

Carolyn Kiel: Thanks for listening to Beyond 6 Seconds. Please help me spread the word about this podcast. Share it with a friend. Give it a shout out on your social media, or write a review on Apple Podcasts or your favorite podcast player. You can find all of my episodes and sign up for my free newsletter at beyond6seconds.net. Until next time!