Research Recap with Skye: Interpersonal Relationships and ADHD
Welcome to Hacking Your ADHD. I'm your host, William Curb, and I have ADHD. On this podcast, I dig into the tools, tactics, and best practices to help you work with your ADHD brain. Today, I'm joined by Skye Waterson for our research recap series. In this series, we take a look at a single research paper and dive into what that paper says, how it was conducted, and try to find any practical takeaways. In this episode, we're going to be discussing a paper called "The Experiences of Adults with ADHD in Interpersonal Relationships and Online Communities: A Qualitative Study."
This study looks at how young adults with ADHD navigate real-world interpersonal relationships, how they mask their symptoms to fit into a neurotypical world, and what happens when they turn to online platforms like TikTok and Facebook.
If you'd life to follow along on the show notes page you can find that at https://HackingYourADHD.com/307
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William Curb: Welcome to Hacking Your ADHD. I'm your host, William Curb, and I have ADHD. On this podcast, I dig into the tools, tactics, and best practices to help you work with your ADHD brain. Today, I'm joined by Skye Waterson for our research recap series. In this series, we take a look at a single research paper and dive into what that paper says, how it was conducted, and try to find any practical takeaways. In this episode, we're going to be discussing a paper called "The Experiences of Adults with ADHD in Interpersonal Relationships and Online Communities: A Qualitative Study."
This study looks at how young adults with ADHD navigate real-world interpersonal relationships, how they mask their symptoms to fit into a neurotypical world, and what happens when they turn to online platforms like TikTok and Facebook. They also had someone mention Clubhouse, which was incredible because Clubhouse—
Skye Waterson: It's such a blast from the past.
William Curb: It really is. So, let's get into this, because it is an interesting paper and different from what we usually do in that it is qualitative.
Skye Waterson: Mm-hmm. Yeah. It's nice to do a meta-analysis and a statistical review of everything, but it's also nice to just hear people's voices and stories. That's one of the reasons why both quantitative and qualitative research are such important parts of what we do and what academia does.
They went through a process with 43 participants. The median age was 29 years, and the age of diagnosis was, on average, 22 years. They were particularly looking for people online, so they had focus groups that took place over Zoom. These were video and audio recorded with the participants' consent. Because these were focus groups, it was a very conversational environment. You could see people talking, engaging, agreeing, and disagreeing.
In terms of how they analyzed it, they developed a codebook using an IPA framework and then organized and categorized it. If you've ever done qualitative research, you will know that it is actually more work to do the research development side than quantitative. Quantitative is definitely hard, but it's a lot of work to use this method to get these results.
William Curb: Yeah, absolutely. Trying to find the thread through everything is a little harder than just saying, "We have numbers."
Skye Waterson: There's a whole system called NVivo that you often use in academia. You go through and tag everything, doing line-by-line and chunk-by-chunk coding just to get a sense of how they arrived at these conversational results.
William Curb: Yeah. Reading through the paper, there were definitely some quotes where I thought, "Oh, wow, yep, that’s it." This is why I think the way they did it was great. They held focus groups where someone would talk and others would add on. That really cuts through a lot of stigma. It’s a lot like group coaching; having those interactions makes it much easier to share and talk about your own experiences because a lot of these experiences are more universal than we realize.
Skye Waterson: 100%. Just having the ability to say, "Oh, it's not just me," makes people feel better. You can see it right from the beginning. The first thing people talk about is feeling different from others. They reported longstanding feelings of being different from their peers, difficulty relating to neurotypical people, and a lot of masking. I thought it was interesting they referenced the original reason for masking—or the original term—which was to hide disgust. I didn't know that. But they went through the shame of not understanding what was going on or having to hide who they were.
William Curb: Yeah. One thing I saw coming up over and over again is how what happened to them as kids related to how they became adults. There was one quote: "I know that I was really hyper as a child, but I realized that it was awkward, so I internalized that and I became really quiet in adulthood." And I was like, "Oh, that."
Skye Waterson: Yeah, it is interesting—the childhood dynamic. Especially when you are someone who successfully masks; successful masking is its own kind of problem in adulthood. You don't really get to avoid the struggle; it's just a different way of experiencing it.
William Curb: Yeah, and it often feels like there’s no cost to masking. It’s like, "Oh, this is how I’m going to fit in." But it’s not a benign survival mechanism. Studies have shown that it reduces your lifespan and is not good for your mental health.
Skye Waterson: Mm. Yeah. Being someone else is not usually a good way to go about life. You could see it because the other thing they talked about was their connections with other neurodivergent people. We should say this was quite an open category; participants could have multiple diagnoses. They weren't being very strict with that.
But they did say they tended to appreciate how people with autism or ADHD tended to be more direct. They didn't have what they called "double speak." They were very direct, and I definitely related to that. Even when I've been friends with neurotypical people, it's always been the ones other people consider quite blunt. I was like, "Well, at least I know. At least I have the information."
William Curb: Yeah, when someone dances around a point, you're left wondering, "Is this what they really want or are they trying to tell me something else?" It makes it really hard to make sure you're doing what they want.
Skye Waterson: Yeah. I do not have time to learn your social cues. Sometimes it's—sorry, I lost my train of thought. This is such a fun paper; I keep thinking about so many different things. When they were talking about wanting connections to feel simple and connecting more with people who had ADHD or specific symptoms, it was really interesting. It made me wonder about the time before I understood what ADHD was—because I was diagnosed very late, as were you. There was a sense that "these are your people" and "these are not your people."
William Curb: Yeah. I've talked with some of my friends about how I always end up in the "weird" friend group, regardless of whether they are neurodivergent or not. I'm always in the outsider group because that's just who I am. I have learned to really love that group, but it didn't always feel great.
Skye Waterson: It is interesting. Also, regarding this idea of being explicit, have you ever heard of the term "gunny sacking"?
William Curb: It sounds familiar, but I can't quite pull it.
Skye Waterson: It's the idea of when people don't tell you something and they hold that information, and then you find out two or three weeks later. They'll say, "You didn't come to the thing. You were late, and I was really upset. And then you did this and this, and I didn't say anything then, but now you've crossed a line, and I'm going to tell you about all the things you did wrong."
It made me wonder about that from an ADHD/neurotypical perspective. In this paper, people talked about wanting others who were more straightforward.
William Curb: Yeah, they don't want that. Especially when they're talking about friends thinking they don't care because they're late. Being late isn't about the other person; it's about me and my inability to manage time. Over and over again, that can build up resentment where people think, "Well, you don't care about me because you're never on time."
So I can see that being hard when people don't understand that what you're going through is really difficult. One of the interesting quotes here to play off of this was: "People do treat me differently when I tell them I have a neurodevelopmental disorder rather than saying ADHD." Because if I say I have a neurodevelopmental disorder that affects my memory and executive function, people say, "Oh, what's that? Have I heard of it?" But if I tell them what it actually is, they aren't going to believe how serious it is or how much it affects me. People don't realize how much ADHD affects us because it's often played as a joke in popular media. They think, "Oh, you'll just get over that if you try."
Skye Waterson: Yeah, 100%. It’s one of those things that has been memed to a point where the actual information has been lost—like the "time blindness" we talked about in a different episode. But it was interesting. It made me wonder about being straightforward and saying, "Look, I know you struggle with being late, but I’m the kind of person who is on time, and when someone is late, it makes me feel bad. Could you try and be on time?" Then you think, "Okay, cool. I value this friendship, and apparently, this is an important way to show appreciation, so I'm going to be early and see you less often because I just cannot..."
There’s a sense of how much effort you are putting into the relationship. One of the things that came up with social impairment and logistical difficulties was that when you're talking to people who understand it, there is less effort involved. That is what masking is, essentially—an additional layer of effort on top of natural existence. If someone is 10 minutes late, it’s seen as a personal slight rather than just an issue. Trying to be exactly on time just means I’m going to have to be early.
William Curb: Yeah. And I think having that kind of explicit communication is key. Although we talk about how we are more direct, there are times when we think, "Well, I expect you to understand my internal experience even though you can't," which is also unfair on our side.
I've noticed this when trying to communicate with my kids. There are certain things I want them to do or not do, and because of my lifetime of experience, I think my request is very clear. It is not clear to them. If I slow down and say, "Hey, this is how I’m feeling about what you're doing, and if you continue doing it, we're going to have consequences," that level of communication really changes their behavior because I'm actually communicating now, not just staying at the surface level of "don't do that."
Skye Waterson: Yeah. You feel like they "should just know." When I find a "you should just know" person, I think, "Ooh, back away slowly." It’s not going to work. Should we talk about the online piece as well? I feel like that was a huge part that came up.
William Curb: Yeah, because they were drawing from online communities. This is an interesting limitation and a strength of the study. These people were already participating in online communities. A majority of the participants were white women, which makes sense, as the people seeking out the most information about ADHD are usually late-diagnosed women. They turn to these communities to learn more.
Skye Waterson: And if you're wondering, "What about the men?" I work with a lot of male CEOs who were diagnosed in school. They say, "Yep, I got diagnosed in school. I was on medication; now I’m probably not. I don't really think about it because it was explained to me when I was younger." They often work in trades or construction. Those are two different ADHD silos I tend to see.
William Curb: Yeah. So, most of these people were engaged with online communities. A significant number of people found their diagnosis through TikTok, Instagram, or similar platforms. They are learning about the condition there. I always say: if you're not seeking out the information, you're not going to learn it, and social media puts stuff in front of you whether you want it or not.
Skye Waterson: Mm-hmm. Yeah, pretty much. It was interesting hearing about the benefits of social media. Before we talk about the struggles, there’s the benefit of seeing a TikTok and thinking, "Yeah, this sounds like me." Then the algorithm feeds you more of that, and you end up on "ADHD TikTok."
William Curb: Yeah. Being able to say, "Oh, I have a place where I can discuss this because everyone here is neurodivergent in some way." In real life, there might only be a handful of people in my life who are neurodivergent, and they might not even know it because that’s often how family dynamics work.
Skye Waterson: 100%. Social media is kind of like being in a big room full of people; you're trying to move forward but getting shuffled back. Then it’s like you accidentally walk through a door backwards, turn around, and find you’re in a room full of people just like you. I was part of a lot of Facebook groups, and those groups just get under your skin.
William Curb: Mm-hmm. That was one of the interesting things people talked about. Some had really good experiences in those communities, and others said, "Yeah, I just never clicked with anyone in these groups."
Skye Waterson: That’s a really good point. Beyond the community, there was the content itself. This part is about us! They said content created by and for people with ADHD was seen as more beneficial than the clinical information they had previously been introduced to. We did an episode on TikTok content creation recently, and they felt it was more validating to hear it from people who understood what was happening.
William Curb: Yeah. One of the authors of the study actually has ADHD. To help spur discussion, if people asked if they had ADHD, the author would say, "I do." That helped people feel willing to talk more about their own ADHD.
Skye Waterson: It comes back to the previous conversation: do you really want to have a conversation about time blindness in a room full of people who will just stare at you blankly?
William Curb: And say, "Are you serious? Just figure out how long the task takes. Don't just think about it."
Skye Waterson: Or the worst one: "Ooh, you should get tested. Actually, I know somebody," and it turns out to be some random, unrelated thing.
William Curb: There are so many rough conversations where someone says, "Really? That’s an issue?" And you're like, "It's so much of an issue, and I really hate talking about it because it makes me feel super awkward that it's not an issue for other people."
Skye Waterson: Yeah, 100%. They mentioned that feeling validated by learning their tendencies were attributable to a diagnosis was very helpful. They also talked about learning coping skills. This is the good side—we'll talk about the bad side in a minute—but finding people who had spent hours figuring out how to properly organize their fridge in a way that worked with ADHD meant they didn't have to reinvent the wheel.
William Curb: Yeah. So often when we see stuff online, it's not written with ADHD in mind. We see a perfectly curated Instagram house and think, "Ooh, that should be my house." It should not be.
Skye Waterson: 100%. Marie Kondo is obviously a lovely person, but a lot of that advice is very neurotypically focused. I used to be a complete nerd for all these systems, but when I tried to use them, they just didn't work. I assumed it was a failure of mine. It was only when I found out I had ADHD that I realized those systems were built with executive functioning strengths that I just did not have.
William Curb: Yeah. I also love that Marie Kondo eventually said that her system worked well when she didn't have kids, but once she had kids, it was no longer sustainable.
Skye Waterson: I loved that too. I remember learning that and thinking, "Yes, I knew it!" She’s coming to New Zealand soon and writing a new book, so I feel like it’s probably going to be about what she learned when she had children.
William Curb: It’s so important to keep in mind who you're getting information from. Do they have a similar lifestyle or similar circumstances? It’s easy for someone to say, "Just do these things," but I have to get my kids to school. I can't just ignore them. If someone has a great morning routine, do they have help? Do they have a partner who is a full-time caregiver?
Skye Waterson: Yep. I say that as my husband is taking care of my kids right now so that I can be here. Otherwise, this would not be possible.
William Curb: Yeah. If you don't get the full picture, you get into the big concern here, which is misinformation. It’s not always "misinformation" exactly, but rather a misrepresentation of what's going on.
Skye Waterson: It is part of it. There is inaccurate information—people posting content without medical or psychological training and having it go viral. One thing they mentioned was how "new" symptoms get created that are just normal human experiences. If you're in a room siloed with only ADHD people, and someone mentions talking out loud to themselves, people might say, "Oh, that’s an ADHD thing!" when it’s actually just a general processing thing.
William Curb: Yeah. I was somewhere recently, and someone who had learned what I do asked, "Is having a song stuck in your head a symptom of ADHD?" I told them, "It's not not a symptom, but it's definitely not a specific symptom."
Skye Waterson: Yeah, it’s definitely not in the DSM. No one asks that question as part of the diagnostic process.
William Curb: Everyone gets songs stuck in their head. If it's chronic and affecting your life, maybe look into it, but I wouldn't start there.
Skye Waterson: That’s the struggle. I will say, however, that things like emotional dysregulation became a conversation online. At first, people said the creators talking about it didn't have the right medical background for that discussion. Back then, it wasn't part of the official diagnostic process, but now it is much more recognized. There is a fluidity to this process that makes the conversation difficult.
William Curb: Science is not set in stone. It is our current understanding of what things are, so it is going to be fluid. In 10 years, our definition of ADHD could be vastly different.
Skye Waterson: To give an example, the DSM originally considered ADHD to be related to head trauma. Now we have a much different discussion. A lot of those conversations come from what clinicians see, but now they also come from social media. It’s always good to check what is currently accurate.
William Curb: Yeah. Just because something is on social media doesn't make it a symptom. People talk about liking "big spoons versus little spoons." That’s probably more related to autism than ADHD, but because there’s a high crossover, it feels like it’s an ADHD thing. Even then, it’s often just a personal preference.
Skye Waterson: Separating different types of disorders is a complicated process even for the people who make the DSM. Doing it online is very difficult. But they had other concerns, too—like the difficulty of online communication itself. If you have ADHD, being online is very distracting. You and I work online, so we have a hard time getting away from the screen. For a lot of people, they found it made their issues harder; they were trying to organize their fridge but also felt they had to respond to an online community.
William Curb: Yeah, responding to emails, texts, Discord—it takes executive function to stay on top of communication when it isn't in real-time.
Skye Waterson: 100%. Other struggles included feeling overwhelmed by too many things going on or feeling like they didn't fit in. People didn't want to engage in debates, or they didn't have a "normal" experience with stimulants. I’d love to know what a "normal" experience with stimulants even is, but that became a reason why people struggled.
William Curb: Different communities have different rules for engagement, which can make it hard for new people. You might want to talk about a new idea you heard, and they’ll say, "We’ve banned that topic; you're muted for a week." And you're left wondering, "Wait, what?"
Skye Waterson: It can be very frustrating because you're trying to have a conversation in a crowd and have it feel personal and relevant to thousands of people.
William Curb: Or you post something and no one responds, which is super triggering for RSD (Rejection Sensitive Dysphoria), even if it just got buried by the algorithm.
Skye Waterson: And RSD is a colloquial expression that isn't part of formal academia yet, but it’s still widely used. Being part of a neurodiverse community can feel great because you feel like you can be yourself, but it isn't a perfect community. It’s not like you get diagnosed and run into the waiting arms of a perfect community that completely understands you. New struggles can still come up.
William Curb: Yeah, absolutely.