r/science • u/mvea Professor | Medicine • 16d ago

Neuroscience ADHD misinformation on TikTok is shaping young adults’ perceptions. An analysis of the 100 most-viewed TikTok videos related to ADHD revealed that fewer than half the claims about symptoms actually align with clinical guidelines for diagnosing ADHD.

https://news.ubc.ca/2025/03/adhd-misinformation-on-tiktok/
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u/cskelly2 16d ago

As a therapist with severe adhd it’s obnoxious. I spend about 50% of my time repairing TikTok misinformation. Especially for neurodivergence, ptsd and DID.

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u/jackofslayers 16d ago

DiD is a really bad one when it comes to misinfo online

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u/VioletyCrazy 16d ago edited 16d ago

One of my favorite musicians has DID, and some of the fandom has some weird brainrot regarding it. Some watch his every move and speculate if he is switching or dipping in a clip and who is in control since he publicly named one of his alters. It’s like they’re dissecting an adored lab rat. Though TBF the additional infantilation of him, I’m not sure if it’s due to his condition or because Oppar status, but it’s a bit weird.

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u/WingsofRain 16d ago

Agreed, there are so many people (especially kids) claiming to have DiD these days when in reality it’s an incredibly rare disorder…like around 1% of the world’s population?

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u/dpdxguy 16d ago

around 1% of the world’s population?

That high?

My ex-wife had childhood trauma induced DID. But I've never met another person who credibly claimed to have it. And I wouldn't have believed she did except for the overwhelming symptoms she exhibited before I took her to see a psychologist upon the advice of her neurologist.

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u/WingsofRain 16d ago

That’s what this%20is,assessments%20for%20an%20accurate%20diagnosis) article from 2023 says. Like it says in the article, it wouldn’t surprise me if people were either misdiagnosed or going undiagnosed because even though there’s been a lot of progress over the years, there’s still a lot of stigma around mental illnesses…kinda on topic for this post if you think about it.

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u/Veil-of-Fire 16d ago

It took me a while, but I tracked down the study that number comes from (the linked study just quoted it, they didn't derive it). It was a deep rabbit hole. That study linked to a 2022 study, which took the number from a 2011 study, which took the number from a 2007 study, which finally led back to the study the number comes from, conducted in 2004 and published in 2006.

This one: https://www.sciencedirect.com/science/article/abs/pii/S0022395605000385?via%3Dihub

The number was 1.5% in their study, which only included families from upstate New York.

The present findings are based on data from a representative sample of 658 individuals from upstate New York who completed comprehensive psychosocial and psychiatric interviews in 2001–2004 (mean age 33.1; SD = 2.9), and in a series of previous interviews conducted with themselves and their mothers during adolescence and early adulthood.

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u/WingsofRain 16d ago

I’ve been on an airplane on and off almost all day today so I appreciate you doing the digging!

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u/cskelly2 14d ago

My fav part about this is it’s reflective of a specific psychiatric population and not gen pop but gets cited as gen pop. The real number is probably something around .04%

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u/PeaceCertain2929 16d ago

Interesting that it says “Dissociative identity disorder (DID) is a psychiatric disorder diagnosed in about 1.5% of the global population. This disorder is often misdiagnosed…”,

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u/WingsofRain 16d ago

I think by that wording, they meant that it’s misdiagnosed as other DSM mental illnesses. Kinda like how people with ADHD might be misdiagnosed with Anxiety or Depressive disorders first since there’s a bit of overlap and comorbidity. It could possibly by a misdiagnosis in the other direction, of course, where another mental illness is being mistaken for DiD, but I think that due to the nature of the study they might be more likely talking about the former?

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u/CyanideKitty 16d ago

I briefly dated a guy with trauma induced DID. He had already been diagnosed when we got together but it seemed some of the symptoms were managed by some of the medications for some of his other mental health issues. I can only imagine that knowing you were getting involved with someone with DID is vastly different than your experience, it being completely unknown. Like you, he's the only actual credible/diagnosed person I've met with it. It will be incredibly difficult for me to ever believe anyone who is self diagnosing, as the self-diagnosed that I've met were all very different from him.

Even knowing that it's just for attention and to be "quirky", I have a hard time understanding why someone would want to pretend to have something like DID. For the very rare few that have it, it can be a terrifying nightmare to deal with, even with diagnosis and treatment. Thank you for getting your ex-wife the help and I hope she's managing it as well as she can be.

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u/thjuicebox 16d ago

Not contradicting you but just sharing:

Sometimes trauma can also induce Secondary Structural Dissociation which doesn’t meet the criteria for a DID diagnosis, but has overlapping components

The DID research website has published some writing about secondary structural dissociation

I found it while trying to understand myself because I experience significant memory lapses and behaved in very contradictory ways that I couldn’t really understand myself either, but didn’t tick other boxes for DID.

Following this I started therapy with a professional who was experienced in using schema/IFS — therapy approaches that address the splitting of self that occurs with trauma, even if it’s not diagnosable as DID

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u/Veil-of-Fire 16d ago edited 16d ago

Not even that.

If it were 1% globally, there would be 5x more DID sufferers in the world than there are Jews.

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u/Suyefuji 16d ago

Then there's me, with cPTSD and what my psychologist stubbornly insists on calling DDNOS because DID is a bad word and she refuses to diagnose it. Like refusing to say the words will magically unite all of my headmates and fix my woefully irregular memory issues.

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u/EllipticPeach 16d ago

I work with kids and so many of them claim to have DID when to my knowledge it’s not something you can have until you’re into adulthood??

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u/batmessiah 16d ago

I actively combat it on TikTok.  I have severe ADHD, and Adderall literally changed my life 16 years ago.  I went from being in the deepest, darkest depression, filled with despair and no self esteem or drive to now being a Associate R&D Scientist with multiple patents and awards, yet I only have a high school diploma.  I would not be where I am today without it.  I am so sick of all the stupid supplement videos I get claiming they have a cure that’s “better than adderall”.  If these supplements “work”, you never had ADHD in the first place.

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u/CactiDye 16d ago

The first time I tried Ritalin, I got up and did the dishes one day without even thinking about it. Straight from, "I should do the dishes," to doing the dishes.

I cried when I realized what had happened. I used to torture myself about doing chores. I didn't understand why I couldn't make myself do what I wanted to, so to just stand up and start was incredible.

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u/AnRealDinosaur 16d ago

I had the same experience. Part of the problem is that it's so not relatable. How do you explain to someone who doesn't experience it why you are physically unable to do a simple task that you deeply want to do? Before medication, I used to have to make insane checklists that included things like "1) open the drawer. 2) take socks out. 3)..." and I had to check off each stupid tiny step and sometimes that didn't even work. I have been paralyzed on the couch because I had to put a dish in the sink. It sounds insane. I will die before I go back.

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u/CactiDye 16d ago

I worked with a therapist for a while who was great, but once we moved beyond the big grief/trauma/mom stuff that I initially started seeing her for... not so great. She didn't understand the ADHD stuff at all.

I remember her telling me to "start with one dish". No, man, once I start I am usually pretty good for a while. The hyper focus takes over and I can get the dishes done. Starting was the problem.

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u/batmessiah 16d ago

"Why don't you just do it?"
BECAUSE IT'S NOT THAT EASY.

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u/Billwillbob 16d ago

A therapist who doesn’t understand or treat adhd can make the ptsd from it worse in my experience. Spent hours talking to a therapist about how I felt guilty because I lived in filth but couldn’t clean, that I would spend months “stuck” at work, had all these random failures in my life, the emotional regulation issues leading to toddler meltdowns at the worst times, etc.. The fix was to think more how I should fix these issues. Dude, I’m here because I’m thinking about these issues.

If these researchers don’t want the info getting out in this uncontrolled and often unscientific way, the fix isn’t for social media to stop people taking about their possible adhd. Mental health professionals need to learn more so maybe they all know as much about adhd as depression (mine didn’t). Also, the mental health community needs to really fix the whole general perception that adhd is just hyper kids that get no discipline and rules from mom and dad. Cause as a kid, I got plenty of discipline and adhd impacted me in way more negative ways than hyperactivity.

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u/redditorisa 16d ago

Mine was when I went to the mall for the first time after taking Vyvanse and could do my shopping without the extreme overwhelm of sensory overload. I could just go in, remember what I wanted, get exactly that, and weave through all the people without feeling super irritated or confused. I wanted to cry from anger realizing that most people just went about their days like this without a problem, but also from relief that I was finally able to.

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u/CROMAGZ 15d ago

This hits especially hard because I both remember that feeling and do not recognise it now. I seem to build up a tolerance very quickly to stimulants and after accelerating through the different doses of both types, and trying non-stimulants, they seem to have just given up on me finding a lasting medication

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u/slimethecold 16d ago

For me, the "oh my god" experience was being able to walk through the hallway and noticing that someone had put their shoes somewhere i would trip on them with me bumping them with my feet first. I never thought that my clumsiness was able to be medicated.

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u/Pay08 16d ago

Is that possible? I was diagnosed with Aspergers when I was 13 but have never been on any medication.

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u/slimethecold 15d ago

I'm sorry, did you mean to respond to my comment or someone else's?

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u/FVCarterPrivateEye 16d ago

Similarly I actively combat it on Reddit, mainly for autism misinformation since that's what I mainly know about

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u/Kir-chan 16d ago

As an adult woman in a country that doesn't recognise adult ADHD and barely recognises it in girls, Adderall is not an option, and as bad self-diagnosis is the symptoms all line up (and I did have a psychiatrist agree that it's likely ADHD, but he sent me to therapy because he can't prescribe ADHD medication to adult women and that was uh almost two years ago).

The closest thing to something that worked was coffee and nicotine, I need to combo nicotine and low-dose melatonin to fall asleep most nights otherwise I'll just get distracted until 5AM. I figured this combo out after half a year of increasingly bad insomnia; insomnia has always been an issue, but recently it escalated to several days a week.

About supplements, very recently I started taking specific supplements as a test because my body has been growing too acclimated to nicotine. They seem to actually be working so I wouldn't just write them off; at the very least they took the edge off the anxiety and depression, and that's two less things to get overwhelmed by.

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u/batmessiah 15d ago

I don’t doubt that vitamins might make a difference in some people, and I’m sad that you can’t get adderall.  If Coffee and Nicotine worked (trust me, I abused the hell out of caffeine when I was younger) I wish you could experience Adderall.  It’s like putting on glasses for the first time after being nearly blind.  It’s not a subtle feeling that could be chalked up to placebo.  It’s like someone lights a fire in your heart for the first time.

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u/sad_pawn 15d ago

Well, these stupid videos are most likely undisclosed ads. There has recently been a very troublesome trend of advertising towards ADHD people, both apps and supplements. It's become a known frustration within the ADHD community online.

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u/Proof-Technician-202 16d ago

Thank you for the work you do, though. After all the years I struggled with undiagnosed ADHD, I have a genuine appreciation for those who help treat it.

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u/sadi89 16d ago

It is definitely frustrating, particularly because there are so many other disorders, life events, and lifestyle factors that cause issues with executive function.

In a non-clinical setting the example I like to use is “Have you ever lost a sandwich…..while eating it? Not forgetting where your sandwich is when it’s in your hand, actually lost a sandwich half way through. Follow up, does loosing a sandwich while eating it sound absolutely unimaginably absurd to you?”

(That isn’t to say that loosing your food while you are eating it is diagnostic criteria-it is not at all-just a personal example I have used that I’ve noticed helps people grasp the “disorder” part of adhd)

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u/Cantareus 13d ago

Haha, I do this with food too. Either lost without realizing it or finished eating it without realizing it. I prefer the former, it's frustrating feeling the anticipation of eating something delicious then in the next concious moment realizing that it was eaten on autopilot. Better to rediscover uneaten food later in the day.

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u/sadi89 13d ago

Then there is the best one. Thinking you have finished your food only to look down at your plate and realize there is more!!!

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u/JewishTomCruise 16d ago

It comes across like you think the disorder part means disorganized. It doesn't. In this context disorder means that something out of the ordinary is causing harm.

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u/sadi89 16d ago

Nope, I meant something out of the ordinary that is harmful to an individual, Like loosing your food while you are eating. Disorganized would be forgetting where you put your lunch box. Disordered would be having such an intense interest based nervous system that your attention is moved from a basic survival necessity (like eating) to something else AND not having the capacity in working memory to retain where the sandwich was placed when attention was moved off the sandwich and onto the new focus of attention.

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u/[deleted] 16d ago

It’s alot easier to mad at self-diagnosed people when you have a diagnosis. I didn’t self-diagnose but I wish I had because I was misdiagnosed my entire life and it would have been nice to know why I was so dysfunctional sooner and what I could do about it. Rather than “oh you’re destined to be a criminal”.

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u/sad_pawn 15d ago

Can I ask how/where do you do it? Online, individual practice/clients, other places like schools, etc? I'm curious where you encounter it.

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u/cskelly2 15d ago

I co-own a private practice. I’ve worked in public mental health outpatient facilities and residential treatment facilities as well and seen it there, though surprisingly(to me) less frequently than I do now in PP. Unfortunately it’s not just clients that I hear it from. I also see a fair number of predominantly masters level clinicians echoing some pretty pseudoscientific and extremely generalized diagnostic criteria. To give an example, a clinician I spoke to today stated a “red flag” for ADHD is when a person walks into a room and forgets why they were there. This is a pretty common experience for most people, has a well documented cognitive process behind it, and is definitely not part of the diagnostic criteria. This is not to say masters level clinicians aren’t capable as a group or shouldn’t diagnose, just an observation I’ve had. I know some great counselors and social workers!

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u/sad_pawn 15d ago

That's very interesting, actually. Thank you for your response. I wonder, especially for clinicians, what's the chain of the misinformation. Aka is it directly from tik-tok, mouth to mouth, other online spaces/forums, patients, etc. Also, is it a recent phenomenon? In my understanding ADHD had been misunderstood a lot even before the current push and the diagnostic criteria has changed pretty significantly. I wonder if part of the problem also is that there never been good public understanding of the disorder, and the clinical understanding has shifted a lot as well.

Also with clients, is it more on the side of self-diagnosis based on the misinformation? Is it mostly younger people?

Sorry for all the questions, obviously no pressure to answer or give any details. It's just interesting to see perspective of someone from within the industry.

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u/cskelly2 15d ago

No worries! Happy to give my .02 on this. To your question about origin I would hypothesize it’s a mixture of all of them. I personally think that there is a large push for content from clinicians to better their SEO which, much like cable news, makes a mad rush for new and exciting stuff. Infographics show up so often in local therapist groups as marketing material. These infographics are often extremely vague or generalized.

To your question regarding novelty, I would say it’s not new, just worse. There were always misunderstandings of psychiatric disorders like “I’m a little ocd, I like things neat” or “that person is bipolar. They are so moody!”

With clients I will say younger gen’s tend to do it more but it’s not exclusive. There is also a push back for correcting misinformation for fear of losing clients that I believe reinforces it. I’ve had clients fire me for giving them an assessment of which they didn’t like the result. Which is fine, but I could see why many clinicians would be reticent to give psychoeducation in those moments

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u/cskelly2 15d ago

I will add that all of that is speculative on my part so take it as a theory

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u/beezy-slayer 16d ago

It's so frustrating

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u/plz_callme_swarley 16d ago

neurodivergence used to mean something, now it's just for self-diagnosed sub-clinical autism for people who feel different or want to be victims.

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u/JewishTomCruise 16d ago

Neurodivergence never really meant anything. It has no clinical definition, it's always been a pop psychology word.

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u/cskelly2 16d ago

It isnt. It’s just a shortcut word we use. It absolutely has a definition. Unsure where you got the idea it doesn’t.

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u/JewishTomCruise 15d ago

It is not a medical term. Yes, it has a definition, but it is not used clinically, and therefore you would never find it in an assessment report, for example.

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u/cskelly2 15d ago

That doesn’t make it pop psych and we absolutely use it when discussing clinical matters and policy. It speaks to a specific clinical philosophy and is fine shorthand.

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u/JewishTomCruise 15d ago

Pop psychology is the simplification and interpretation of psychological theories to present them to the general public. "Neurodiversity" and "neurotypical/neurodivergence" absolutely fall under that definition. Furthermore, it originated from and primarily is a sociological term.

Neurodiversity can be understood as a concept, political term, guiding concept of a social movement or as an identity-related term. In the discourse of social science, it is mainly a theoretical perspective and concept based on the diversity of neural structures (see Singer, 1997, 1998, 2017, 2020; Hughes, 2016; Kapp, 2020; Liu, 2017; Walker, 2014, 2021).

https://doi.org/10.1111/soc4.13249 page 2.

The neurodiversity movement, similar to comparable social movements, advocates for inclusion, participation, and freedom from discrimination for people who describe themselves as neurodivergent. It explicitly opposes discriminatory neurotypical structures and advocates for an accepting and diverse society.

https://doi.org/10.1111/soc4.13249 page 4.

However, neurodiversity activists reject such a definition and demarcation via medical diagnoses (e.g. Arnold, 2017; Singer, 2020; Walker, 2014, 2021), as they reproduce medicalizing hegemonic structures as well as an interpretation of diversity as a disorder instead of focusing on the social dimension of diversity of neuronal structures. Moreover, as can be added from a critical social theoretical perspective, the tertium comparationis—the neurotypicality—remains undefined in such an understanding of the term.

https://doi.org/10.1111/soc4.13249 page 5.

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u/cskelly2 15d ago

Your sources show that it’s a commonly used term for a specific clinical philosophy and that it’s a term that is used for that purpose (which is what I said). It does not agree with your statement it is a sociological term in origin. Your operational definition of pop psych doesn’t really work here either, as its original intention is not to generalize or make things more approachable, but rather to consider an alternative model of psychiatric presentation, for which it is used as a shorthand word (which is what I said). I have to say, being talked down to this aggressively for something I’ve been doing for 10 years is a weird look. But you do you my friend. Take care.

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u/plz_callme_swarley 16d ago

no, neurodivergence does have a clinical definition. It just means that you have brain that's not typical and there's a list of diagnoses that fall into that bucket.

Then sad people took the word and used it as a gold star sticker to make themselves feel like a victim when their lives suck

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u/JewishTomCruise 15d ago

Yeah? Show me where it is in the DSM or ICD.

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u/plz_callme_swarley 15d ago

something can have a clinical definition while not being a diagnosable disorder in the DSM

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u/JewishTomCruise 15d ago

You said "there's a list of diagnoses that fall into that bucket." That implies that you think it is, like there are a number of diagnoses that fall under ASD, or BD.

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u/slimethecold 16d ago

As someone with diagnosed DID... Thank you for doing this!