TikTok Is Shaping How We Think About ADHD

FLORA LICHTMAN: This is Science Friday. I’m Flora Lichtman. If you’re on TikTok, you know that the app is more than just silly dance trends, cat videos, and makeup tutorials.

It’s also a place where people with shared experiences or identities find each other. And one of those communities has formed around ADHD. If you’re a part of that TikTok world, you have probably seen dozens of videos like this.

SPEAKER 1: Five less well-known ADHD behaviors with doodles, let’s go. Number one, listening to the same song on repeat until you are sick of it.

SPEAKER 2: Due to your mimicking spirit, you will find yourself absorbing others’ accents.

SPEAKER 3: Feeling that everyone hates you. They’re secretly talking behind your back, that you’re not good enough.

SPEAKER 4: Sitting in your car for a really long time before you go into your house, and this is because ADHDers often struggle with switching tasks.

FLORA LICHTMAN: Our next guest noticed these videos popping up on her feed, and she decided to use her clinical psychology expertise to try to understand this phenomenon better. She analyzed the 100 most viewed TikTok videos about ADHD to assess how accurate they are and how young people respond to them. Joining me now is Vasileia Karasavva, a PhD student in clinical psychology at the University of British Columbia in Vancouver, Canada. Vasileia, welcome to Science Friday.

VASILEIA KARASAVVA: Hi. Thank you for having me.

FLORA LICHTMAN: OK. For those of us who are not on TikTok, just give us a taste of what these videos are like. Was that clip representative? Who’s making them and what’s the format?

VASILEIA KARASAVVA: It is pretty representative. So the people who make them in our study, we found most of them spoke from their own personal experiences. And very few of them had any training in clinical psychology or psychiatry or mental health in some related field. I think the goal for so many of these videos is for people to talk about what they’ve been experiencing in ADHD in a way that’s cute and entertaining, and perhaps even if it doesn’t match up exactly the diagnostic criteria of ADHD.

FLORA LICHTMAN: So what made you want to take a closer look at this?

VASILEIA KARASAVVA: Well, me and the second author, who’s also my friend, Caroline Miller, had found ourselves sending each other a lot of TikToks about ADHD. We are in an ADHD-related lab, so we found them interesting. And I think the algorithm picked up that we were sending them to each other.

So they kept showing us one of these videos. And we kind of wanted to see if that’s the average experience of the user, getting videos that are very cute and quirky and funny, but not really good representations of ADHD. Or was it just us?

FLORA LICHTMAN: So when you analyze these videos, what did you find?

VASILEIA KARASAVVA: Well, about half of them did not really match up the diagnostic criteria of ADHD. We found that a good chunk represented behaviors that are highly associated with ADHD but are not really symptoms of ADHD, like difficulties in social relationships. And the reason why that’s not a symptom in ADHD is because there are so many other things that are associated there, like your personality or your temperament. But by far, the biggest bucket was things that are not associated with ADHD at all or with any other mental illness and are probably part of the human condition, like having a sweet tooth or listening to the same song over and over, or liking a certain TV show a lot.

FLORA LICHTMAN: How good are people at discerning between videos that were accurate and those that aren’t?

VASILEIA KARASAVVA: This is what we wanted to find in our second study. And we showed the top 5 and bottom 5 videos do about 800 young adults with or without ADHD. And we actually found that people who consume the high diet of TikTok also found these TikToks more helpful or more accurate, more likely to recommend them.

FLORA LICHTMAN: They felt they were more trustworthy, even if the information in the videos was not accurate.

VASILEIA KARASAVVA: That is correct, yes. And they felt worse about their own ADHD symptoms, and assumed ADHD is more prevalent in the population than it actually is. I think that this is very akin to doomscrolling.

For example, it’s probably really helpful to keep up-to-date with what’s going on in the world. But how helpful is it to you to spend hours upon hours about everything terrible that’s been going on all around the globe? You probably feel a little worse about yourself. And we’re thinking that something similar might be happening here, where people reach a point where consuming more of this content about ADHD doesn’t really help them understand their own experiences and instead might make them feel worse about them.

FLORA LICHTMAN: I mean, these videos are really short, and they’re interspersed with cat videos and news analysis. Do you have suggestions for people on how to think more critically about them when they are served up? What should people do differently?

VASILEIA KARASAVVA: Yeah, the biggest one is if someone appears very confident, question them. Mental illness exists on a spectrum. It can appear differently on different people, especially something like ADHD. So when you have creators who present their own personal experiences, as a size one-fit-all solution, this is kind of a red flag.

And the second biggest red flag is the question people who, in one breath, are telling you, hey, you have this symptom. And this is ADHD, and they’re diagnosing you with something. And in the next breath are selling you a solution that apparently only they have, and it’s gatekept by the health system.

FLORA LICHTMAN: Thanks for joining me today.

VASILEIA KARASAVVA: Thank you for your interest in our work.

FLORA LICHTMAN: Vasileia Karasavva, PhD student in clinical psychology at the University of British Columbia in Vancouver, Canada. Now to zoom out a bit. TikTok and other social media sites are full of mental health content, not just about ADHD.

So what does this mean for teens and young adults who spend hours a day scrolling? What does it mean for clinicians in their practice? And how does the prevalence of these videos influence culture around mental health? Joining me now to talk through these questions and more is Dr. Jennifer Katzenstein, Director of Psychology, Neuropsychology, and Social Work and co-director of the Center for Behavioral Health at Johns Hopkins All Children’s Hospital, based in St. Petersburg, Florida. Jennifer, welcome to Science Friday.

JENNIFER KATZENSTEIN: Thanks so much for having me, Flora. It’s a pleasure to be here.

FLORA LICHTMAN: How often are you seeing teens or young people come in with a self-diagnosis they picked up from social media?

JENNIFER KATZENSTEIN: It’s more frequent, certainly, than it ever has been before. When I see my pre-teen and teenage patients, it’s gotten to the point now where I actually go ahead and just ask them who they have been following online and if they’ve ever felt that they were similar to an influencer or someone online in a social media site.

FLORA LICHTMAN: Really? So it’s changed your practice.

JENNIFER KATZENSTEIN: It’s totally changed my practice. It has gotten me to ask the question up front.

FLORA LICHTMAN: I mean, is it a helpful shortcut for you or is this more like this is helpful context for you?

JENNIFER KATZENSTEIN: It’s both, honestly. I really need the context to know. And I think mental health is one of those things where we have so many spectrums of normal.

And so is this a symptom that was just for a moment or has this been life-long? How does it impact everyday functioning? And then knowing where my child that I’m working with and their family is coming from, so that I can see what are they really already thinking. What have they even tried, right, because so many times they’ve even gone down some of a treatment path without having a diagnosis, too?

FLORA LICHTMAN: How often is that self-diagnosis correct?

JENNIFER KATZENSTEIN: Oh, gosh. I would say more often than not, it’s not correct. Or it’s within the spectrum of normal, right. And there’s a certain amount of anxiety that’s normal, and that facilitates us for getting our homework done on time and studying for that test.

And there’s a certain amount of social anxiety that is normal, too. And we do feel anxious in new situations, and it’s OK to withdraw. Is it impacting your daily functioning?

Is it preventing you from doing previously enjoyed activities? Is it preventing you from engaging in the home or at school? That’s when we kind of head to that diagnostic arena.

FLORA LICHTMAN: We asked our listeners to share stories about this phenomenon of self-diagnosing through social media. Let’s hear one of them.

COURTNEY SORRENTO: Hi. My name is Courtney Sorrento. I’m from Buffalo, New York. My daughter was posting a lot on her social media about ADHD, and I kept saying, that’s me, that’s me.

And so here I was in my 50s self-diagnosing. And so I brought it up to my physician, and I got an official test, and I do. I’m very strong ADHD.

I never knew. And now I am getting treated for it and starting to improve my life. And so that actually turned out to be a happy ending.

FLORA LICHTMAN: Jennifer, is this something that you see? You diagnose a kid, and then the parents realize, oh, I think I have that condition.

JENNIFER KATZENSTEIN: Yeah, it’s funny because it goes both ways. Sometimes, I’ll have a parent who happens to get a diagnosis, and that might be because of someone they saw on social media or in talking with their physician. And then they start to recognize those symptoms in their kid.

And we really do see that go both ways. I think one of the amazing pieces of this story for me is really just how we’ve broken down the stigma surrounding mental health diagnoses, as well, that everyone is starting to have more access to the information and feeling empowered to seek out appropriate treatment and diagnosis, if it’s necessary. And you see in this story here how it can significantly improve your overall functioning and your quality of life.

FLORA LICHTMAN: Let’s go to another listener.

MICHAEL: Hi, this is Michael calling from Brooklyn, New York. I’m on Instagram. And I find that every single time I’m going through the reels, and I see one about this, every single time I walk away thinking for sure that I have autism or at least I’m on the spectrum somewhere.

And then I’ll hold it up next to things, like, but I don’t really want to talk to anybody about it. And I certainly don’t want to talk to my genuinely autistic people that I know in my life and bring it up to them. So there’s a little bit of, like, OK, underneath my sureness, I kind of know that it’s not really something. It’s just because it’ll be details like do you have a specialized interest.

I’m, like, yeah, I do. These are things that I know in my heart of hearts are kind of things that lots of people deal with on a day-to-day basis. But I think I started thinking about it a lot more. There has to be some reason for why I’m spending all this time on these stupid feeds, and a diagnosis is the most compelling reason.

FLORA LICHTMAN: Jennifer, any response to this?

JENNIFER KATZENSTEIN: Really, these voicemails are fantastic. These are great opportunities to share because, again, when we think about symptoms, they all come together in different ways to get us to a diagnosis. And that’s why there’s a spectrum really for so many of the mental health diagnoses we have, and autism is one of them in terms of that neurodiversity component.

So having a specific interest is common for so many individuals. But does that interest interfere with your ability to talk about or be interested in any other topic? And, again, recognizing, too, that we’re living in this time where information is coming at us.

Our brains are adjusting to how quickly information comes in. Our attention span, with the amount of device use that we use, there’s research to suggest it’s shortening. So really just again evolving with the technology that we have with us but not necessarily meaning that it’s a diagnosis.

FLORA LICHTMAN: Do you think this is different, this phenomenon of self-diagnosing through social media, is it different than googling your symptoms on WebMD or seeing a commercial for a new drug and thinking, oh, I have that? I need that.

JENNIFER KATZENSTEIN: That’s a great question because we have had that access to information for so long. And I had been asking many of my families again for a long time now, what have you googled, so I get an idea of what you’ve been looking at. It’s really about social media.

I think that back and forth where you can comment and have some information back, or you’re getting more of an active description, and so you might just be looking on a website and seeing a list of symptoms or doing an online quiz. But when you see someone that you respect or someone that you follow and have been relating to their content in a certain way, I find that it almost has a more salient personalization or where you can identify yourself in that because you are, right, having that internet relationship with them in one way or another. That even provides more of an influence than just reading about it online.

FLORA LICHTMAN: It’s a first-person testimonial, and that’s more powerful.

JENNIFER KATZENSTEIN: Exactly, exactly.

FLORA LICHTMAN: And emotional. Do you think that social media has reduced stigma around mental health issues?

JENNIFER KATZENSTEIN: I really do. I think that as we’ve had more and more, especially our young adults, share their experiences, share how they’re feeling, share how that impacts them in their daily lives, it’s empowered others to be able to have that insight, recognize and feel like they not only can be open about that and share it with others, but go and seek supports when they need them.

FLORA LICHTMAN: Let’s go to another listener, Julieta in Oxnard, California, who called in about this.

[PHONE RINGING]

JULIETA: Hi. Good afternoon.

FLORA LICHTMAN: Hi. Tell us your story.

JULIETA: OK, I found out that I had ADHD while I was watching videos on TikTok. And somehow it just popped up on my feed. To me, it was something that people I went to school with, mainly boys, have the hyperactivity.

But when they started talking about how it’s so different with girls and how it presents itself, and I just remember just tearing up. Like, I mean, I was crying, like, but from the inside, that just that really heartfelt cry. Just thinking that I finally have an answer.

I finally found my people. I felt like there was a reason why I really never felt that I belonged or why– I knew that I’m smart. I know that I’m intelligent, just not being able to finish school.

FLORA LICHTMAN: Did you go to a clinician after that to get a formal diagnosis?

JULIETA: I did. I got the formal diagnosis. And here I am, 31 years old, and I felt like I was starting my life over again.

FLORA LICHTMAN: I mean, that’s an amazing story. And I appreciate you sharing your experience with us. Thank you.

JULIETA: Thank you for giving me the opportunity. I listen to Science Friday all the time. And this one, it was just– it hit me to the core.

JENNIFER KATZENSTEIN: This is so great to see amazing outcomes again when the stigma is broken down, and people are seeking out supports and getting additional information to help guide them for their future, incredible. And another great point that a lot of the mental health diagnoses we have can really vary between males and females. And so when we have sometimes a typical set of symptoms, especially in ADHD, we tend to think of that more hyperactivity or impulsive behavior.

And the research would suggest that sometimes girls go undiagnosed because they aren’t showing those disruptive behaviors and are really more inattentive and having difficulty with focus or with distractibility. And so what I tell families is they fly under the radar because they’re well-behaved, and they’re not that squeaky wheel maybe in the classroom.

FLORA LICHTMAN: I asked Julieta what she thought about the misinformation piece that we talked about earlier in the segment, and she was, like, I think of it like a buffet. I just go to the cafeteria of TikTok, and I take what’s useful to me, and I ignore what’s not.

JENNIFER KATZENSTEIN: Yeah, I love that. And that’s something that I hope that we’re teaching everyone with any social media platform, is what information is relevant to me. But then are we good consumers of that information moving forward? And are we recognizing that there is misinformation out there? And how do we go to reputable sites to be able to verify things before they really get incorporated into our belief systems?

FLORA LICHTMAN: Jennifer, thanks so much for this conversation today.

JENNIFER KATZENSTEIN: Thanks so much. Pleasure to be with you.

FLORA LICHTMAN: Dr. Jennifer Katzenstein, Director of Psychology, Neuropsychology and Social Work and Co-Director of the Center for Behavioral Health at Johns Hopkins All Children’s Hospital, based in St. Petersburg, Florida.

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