TikTok Is Shaping How We Think About ADHD

Mental health information on social media can be both revelatory and misleading. How do clinicians and their patients make sense of it?

Speaker names marked ? are inferred from speaking time and the show’s known hosts — they are not voice-verified.

• 0:00Speaker 00

  WNYC is supported by Bear. Science is about asking questions, testing, trying again. It's not easy, but it's relentless. It evolves, and that's why science delivers. Learn more at sciencedelivers.com.

• 0:17Flora Lichtman?

  This is Science Friday. I'm Flora Lichtman. Today in the podcast, self-diagnosis by TikTok. What could go wrong?

• 0:25Speaker 02

  We found that the young adults who watched more TikToks about ADHD were less critical of them.

• 0:35Flora 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.

• 0:57Speaker 03

  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.

• 1:04Speaker 04

  Due to your mimicking spirit, you will find yourself absorbing others' accents.

• 1:12Speaker 03

  Feeling that everyone hates you. They're secretly talking behind your back, that you're not good enough. 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.

• 1:25Flora 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 Vasilia Karasava, a PhD student in clinical psychology at the University of British Columbia in Vancouver, Canada. Vasilia, welcome to Science Friday. Hi, thank you for having me. 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? Like, who's making them and what's the format?

• 2:06Speaker 02

  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.

• 2:37Flora Lichtman?

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

• 2:40Speaker 02

  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 more 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?

• 3:10Flora Lichtman?

  So when you analyzed these videos, what did you find?

• 3:13Speaker 02

  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.

• 3:57Flora Lichtman?

  How good are people at discerning between videos that were accurate and those that aren't?

• 4:04Speaker 02

  This is what we wanted to find in our second study. And we showed the top five and bottom five videos to 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.

• 4:25Flora Lichtman?

  They felt they were more trustworthy, even if the information in the videos was not accurate?

• 4:30Speaker 02

  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 doom scrolling. Like, 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.

• 5:13Flora Lichtman?

  I mean, these videos are really short and, you know, they're interspersed with like cat videos and news analysis. Do you have suggestions for people on how to, how to think more critically about them when they are served up? You know, what should people do differently?

• 5:30Speaker 02

  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 to 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 healthcare system.

• 6:13Flora Lichtman?

  Thanks for joining me today.

• 6:15Speaker 02

  Thank you for your interest in our work.

• 6:18Flora Lichtman?

  Vasilia Karasava, PhD student in clinical psychology at the University of British Columbia in Vancouver, Canada.

• 6:27Flora Lichtman?

  After the break, what does all this mental health content actually mean for patients and the clinicians who treat them?

• 6:33Speaker 05

  It's totally changed my practice. It has gotten me to ask the question upfront. How often are you checking out different influencers on social media? Do you relate to the symptoms that they're showing?

• 6:47Speaker 06

  Support for Science Friday comes from the Heising Simons Foundation. Unlocking knowledge, opportunity, and possibilities. More at hsfoundation.org.

• 7:02Flora Lichtman?

  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 and 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.

• 7:40Speaker 05

  Thanks so much for having me, Flora. It's a pleasure to be here.

• 7:43Flora Lichtman?

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

• 7:51Speaker 05

  You know, 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.

• 8:10Flora Lichtman?

  Really? So it's changed your practice?

• 8:13Speaker 05

  It's totally changed my practice. It has gotten me to ask the question upfront.

• 8:17Flora Lichtman?

  I mean, is it a helpful shortcut for you? Or is this more like this is helpful context for you?

• 8:22Speaker 05

  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 lifelong? 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.

• 8:56Flora Lichtman?

  How often is that self-diagnosis correct?

• 8:59Speaker 05

  Oh, gosh. I would say more often than not, it's not correct. So, or it's within the, 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 okay 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.

• 9:39Flora Lichtman?

  You know, we asked our listeners to share stories about this phenomenon of, of sort of self-diagnosing through social media. Um, let's hear one of them.

• 9:47Speaker 07

  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 a test, 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.

• 10:23Flora Lichtman?

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

• 10:31Speaker 05

  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, your quality of life.

• 11:11Flora Lichtman?

  Hmm. Let's go to another listener.

• 11:15Speaker 08

  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 like, okay, underneath my sureness, I kind of know that it's not really something. It's just because it'll be details like, uh, do you have a specialized interest? I'm like, yeah, I do. Either things that like, I know in my heart of hearts are kind of things that lots of people deal with on a day-to-day basis.

• 11:59Speaker 08

  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.

• 12:13Flora Lichtman?

  Jennifer, any response to this?

• 12:15Speaker 05

  I really, these voice mails 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 an 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.

• 12:57Speaker 05

  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.

• 13:10Flora 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?

• 13:27Speaker 05

  You know, 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 a 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 like personalization or where you can identify yourself in that because you are, right, having that that internet

• 14:10Speaker 05

  relationship with them in one way or another that even provides more of an influence than just reading about it online.

• 14:16Flora Lichtman?

  It's a first person testimonial and that's more

• 14:18Speaker 05

  Exactly.

• 14:20Flora Lichtman?

  Yeah, and emotional. Do you think that social media has reduced stigma around mental health issues?

• 14:26Speaker 05

  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're not only can be open about that and share it with others, but go and seek supports when they need them.

• 14:49Flora Lichtman?

  Let's go to another listener, Julieta in Oxnard, California, who called in about this.

• 14:56Speaker 09

  Hi, good afternoon.

• 14:57Flora Lichtman?

  Hi, tell us your story.

• 14:59Speaker 09

  Okay, 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, you know, people I went to school with, mainly boys, you know, that have that hyperactivity. But when they started talking about how it's so different with girls and how it presents itself, and I just remember just

• 15:25Speaker 09

  Tearing up like I I mean, I was crying like but from the inside, you know, that just that really heartfelt cry, just thinking that I finally have an answer. I finally found my people. I I felt like there was a a reason why, you know, 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.

• 15:51Flora Lichtman?

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

• 15:55Speaker 09

  I did. I got the formal diagnosis and here I am, you know, thirty one years old and felt like I was starting my life over again.

• 16:06Flora Lichtman?

  I mean, that's an amazing story, and I appreciate you sharing your experience with us. Thank you.

• 16:11Speaker 09

  Thank you for giving me the opportunity. I, you know, listen to Sense Friday all the time, and this one was, it was just hit me to the core.

• 16:18Speaker 05

  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 they, what I tell

• 17:03Speaker 05

  families is they fly under the radar because they're well behaved and they're not that squeaky wheel maybe in the classroom.

• 17:09Flora Lichtman?

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

• 17:25Speaker 05

  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?

• 17:52Flora Lichtman?

  Jennifer, thanks so much for this conversation today.

• 17:55Speaker 05

  Thanks so much. A pleasure to be with you.

• 17:57Flora 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.

• 18:12Flora Lichtman?

  And that is about all we have time for. Lots of folks helped make this show happen, including Annie Nero. Emma Gomez.

• 18:20Speaker 10

  Charles Burquist. Danielle Johnson.

• 18:23Flora Lichtman?

  I'm Flora Lichtman. Thanks for listening.