Tik Tok diagnosing

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Some people browse TikTok and Instagram for recipes, memes and colorful takes on the news. Erin Coleman says her 14-year-old daughter uses these apps to search for videos about mental health diagnoses.

Over time, the teen started to self-identify with the creators, according to her mother, and became convinced she had the same diagnoses, including attention-deficit hyperactivity disorder (ADHD), depression, autism, mysophobia (an extreme fear of dirt and germs) and agoraphobia (a fear of leaving the house).

“Every week, she would come up with another diagnosis,” Coleman told CNN. “If she sees a hint of herself in someone, she thinks she has it, too.”

After undergoing testing for mental health and medical conditions, her daughter was diagnosed not with the long list of conditions she’d speculated about but with severe anxiety. “Even now, she doesn’t always think [the specialists] are correct,” Coleman said.

Using the internet to self-diagnose is not new, as anyone who has used WebMD knows. And there can be some benefits. Some parents said social media has helped their teens get mental health information they’ve needed and has helped them feel less alone.

However, many parents and experts expressed concerns over how self-diagnosing and mislabeling could exacerbate teens’ behaviors, make them feel isolated and be counterproductive in getting them the help they need. In a worst case scenario, teens could set themselves on a path to receiving medication for a condition they do not have?

A growing problem
Dr. Larry D. Mitnaul, a child and adolescent psychiatrist in Wichita, Kansas, and the founder and CEO of well-being coaching company Be Well Academy, said he’s seen an alarming number of teenagers self-diagnosing from social media posts.

“Teens are coming into our office with already very strong opinions about their own self-diagnosis,” he said. “When we talk through the layers of how they came to that conclusion, it’s very often because of what they’re seeing and searching for online and most certainly through social media.”

According to Mitnaul, the most popular self-diagnoses he’s encountering among teenagers are ADHD, autism spectrum disorder and dissociative identity disorder, or multiple personality disorder. He said teens previously would come to his clinic to discuss symptoms but did not have a particular diagnosis or label in mind. He started to notice a significant shift in 2021.

“When I’m sitting down with a teen, that’s a time or window of their life where they’re experiencing a lot of different high-intensity emotions, and it can be jarring, unnerving and affect their sense of identity,” he said. “But it doesn’t necessarily mean they have a rare mood disorder that has fairly intense consequences, treatment and intervention.”

Developing an inaccurate sense of who they are from a non-professional diagnosis can be harmful. “Mislabeling often makes a teen’s world smaller when they go out and look for friend groups or the way they identify,” he said.

It can also put parents in an impossible position, and finding help isn’t always easy.

Julie Harper said her daughter was outgoing and friendly but that changed during the Covid-19 lockdown in 2020, when she was 16. Her daughter was diagnosed with depression and later improved on medication, but her moodiness escalated and new symptoms surfaced after she started to spend longer hours on TikTok, according to Harper.

“My teen is obsessed with getting an autism diagnosis,” she said. But they’ve been unable to get formal testing due to long waitlists in Kentucky. “Did TikTok help us figure some things out or send us on a wild goose chase? I still don’t know.”

The appeal of online mental health diagnoses
Some experts believe teens may be over-identifying with a specific label or diagnosis, even if it is not a fully accurate representation of their struggles, because a diagnosis can be used as a shield or justification of behavior in social situations.

“With the mounting pressure that young people face to be socially competitive, those teens with more significant insecurities may feel that they will never measure up,” said Alexandra Hamlet, a clinical psychologist in New York City who works with teenagers. “A teen may rely on a diagnosis to lower others’ expectations of their abilities.”

Social media users posting about psychiatric disorders are also often seen as trustworthy to teens, either because they too suffer from the disorder discussed in the video or because they self-identify as experts on the topic, experts say.

According to Hamlet, social media companies should tweak algorithms to better detect when users are consuming too much content about a specific topic. A disclaimer or pop-up notice could also remind users to take a break and reflect on their consumption habits, she said.

Meta has created a number of programs, including its Well-being Creator Collective, to help educate well-being and mental health creators on how to design positive content that aims to inspire teens and support their well-being. Instagram also introduced a handful of tools to cut down on obsessive scrolling, limit late-night browsing and actively nudge teens toward different topics, if they’ve been dwelling on any type of content for too long.

TikTok did not respond to a request for comment, but it has taken steps to let users set regular screen time breaks and add safeguards that allocate a “maturity score” to videos detected as potentially containing mature or complex themes. TikTok also has a parental control feature that allows parents to filter out videos with words or hashtags to help reduce the likelihood of their teen seeing content they may not want them to see.

Still, the online self-diagnosing trend comes at a perilous moment for American teens, both online and offline.

In May, the US Surgeon General issued an advisory note that stated social media use presents “a profound risk of harm” for kids and called for increased research into its impact on youth mental health, as well as action from policymakers and technology companies.

Linden Taber, a school counselor in Chattanooga, Tennessee, said students are still reeling from the effects of a global pandemic, and many therapists and psychiatrists have months-long wait-lists – not to mention the financial inaccessibility of some of these services.

“I’ve seen an increase in psychological vocabulary among teens … and I believe this is a step in the right direction because as a society, we’ve decreased stigmatization,” she told CNN. “But we haven’t increased access to support. This leaves us, and especially teens, in a vacuum.”

She argues that when a student self-diagnoses based on information they’ve seen on the internet, it can often feel “like a sentencing … because there isn’t always a mental health professional there to walk them through the complexity of the diagnosis, dispel myths and misconceptions, or to offer hope.”

Mental health awareness
For some, however, social media has had a positive impact on connecting people with mental health information or helping them feel less alone.

Julie Fulcher from Raleigh, North Carolina, said she began following ADHD influencers who were able to better explain behaviors, impulsivities and how the condition is related to executive functioning, so she can help her daughter navigate her diagnosis.

Many adults appear to credit social media with helping them identify lifelong mental health struggles. Amanda Clendenen, a 35-year-old professional photographer from Austin, said she sought guidance from a professional after seeing videos pop up on her TikTok “For You Page” about ADHD.

Laura Young, a 42-year-old mother who was also recently diagnosed with autism, agrees, noting she’s found a support system on social media. “TikTok and Instagram have really been the only place where I can hear from actual autistic people from around the world and hear their unfiltered experiences directly,” Young said.

Mitnaul of the Be Well Academy said that adults, in contrast to teens, are able to look at social media posts about mental health more objectively and create curiosity around something they’ve struggled with as a way to take better care of themselves.

“Teenagers are more likely to take in the information and use it as a diagnosis before consulting a professional or an adult who can help interpret what they’re seeing,” he said.

As I understand it, TikTok videos are actually anything between 15 seconds and 3 minutes long, and individual videos are often part of larger multi-part series of videos on a myriad of topics - including lots of information on how to avoid falling for myths and misconceptions that could lead to thinking you have autism when you actually don't. When you add up hours of TikTok time, over days, weeks, months or even years, the fact that all those hours of footage is broken into smaller, more manageable chunks could probably be considered anything from irrelevant to preferable. When huge numbers of autistic people (with and without diagnoses) can get together this way to share their experiences and pool their collective knowledge, not just with each other but also with licensed psychologists, therapists and researchers, it can be a very efficient and accurate resource for better understanding yourself and others. It's literally the power of community and shared effort, filtered through modern technology. And since health care systems around the world are often based on an individual's ability to pay, then whether someone has an existing diagnosis of autism or not is sadly quite arbitrary, and therefor "self-diagnosis" is unfortunately the only option available to many autistic people, which is a big part of the reason that it is considered valid by most of the autistic community.

You're talking about confirmation bias and "being realistic" but it sounds like you don't actually have much personal experience of TikTok? Correct me if I'm wrong. You seem to be make a lot of sweeping generalisations about people's habits and motivations and I'm unclear as to why. As someone who has several years of experience of what actually happens on TikTok, the things you're saying don't seem to add up to me. For example, you don't have to spend too much time on the app at all before it becomes clear that there are very few demographics who don't use it. I personally have followed several people older than you who have made a wealth of in-depth videos and series on multiple topics, including their autistic experience. And there's no such thing as "TikTok Diagnosis" - there are people who use the app as a resource for research and information who may then go on to self-diagnose and seek professional diagnosis. There are, of course, many neurodivergent people who might, for example, struggle to sit through a single two-hour lecture, being unable to concentrate and therefor learn much from it, but who, ironically, will spend hundreds of hours consuming what is essentially the same thing on a much greater scale, all because it's broken into smaller parts and easier for them to digest that way. I kind of think that's quite marvelous, and it give me hope for the future. Perhaps you've just read a lot of grumpy opinion pieces about the "TikTok Generation", written by people who have similarly low levels of first hand experience with the app and it's users?

Do you have any specific suggestions for how those without the necessary money or insurance should go about "setting in motion" a professional diagnosis?

The following states have specific autism mandates, which require certain insurers to provide coverage for autism spectrum disorder. (Certain insurance plans are exempt from state mandates. Please contact your plan administrator to see if your plan includes state mandated autism spectrum disorder benefits.)

If all else fails I have long advocated a thoroughly researched self-diagnosis as an acceptable workaround for those who for whatever reason can not access a competent clinician. I still would not advocate using Tik Tok as the sole resource for self-diagnosing.

Purpose: Although social media platforms have made information about autism more accessible to the general public, concerns have been raised about the unfiltered nature of the content they host. In the current study, we examined the reach and accuracy of videos providing informational content about autism on TikTok, a popular social media platform.

Methods: We examined engagement indicators (including views and "likes") for the TikTok videos associated with the #Autism hashtag. Two coders independently fact-checked informational content of the most viewed videos from the #Autism hashtag videos and coded it as either accurate, inaccurate or 'overgeneralization' based on the consistency of the information in the videos with current knowledge on autism.

Results:Videos associated with the "#Autism" hashtag accrued 11.5 billion views collectively. An examination of the top 133 videos providing informational content on autism, which totaled 198.7 million views and 25.2 million likes, showed that 27% of the videos were classified as accurate, while 41% were classified as inaccurate and 32% as overgeneralized. There were no significant differences in engagement between accurate and inaccurate/overgeneralized videos. Videos created by healthcare professionals were more likely to include accurate information.

Conclusion: The informational content about autism made available on TikTok reaches a wide number of people. Most of the information provided, however, appears to be misaligned with current knowledge. It is important for healthcare providers and other professionals to be aware of the autism-related content being shared on TikTok so that they can better engage with the large community of TikTok users.

Most of the time these videos are just an introduction, gets people thinking, drives them to do more research.

I think TikTok wouild be a bad way to diagnosed oneself with a neurodevelopmental disorder.

If anything, I think it would encourage over-diagnosis amongst folk who tune in to so called 'self help', self diagnostic videos.

Clearly, but if there even an overdiagnosis problem large enough to justify the false negative evaluations?

Self diagnosis gets you nothing if it's not a genuine thing that speaks to your personal life experience.

Yep. Like "self diagnosed people are taking away resources from those who need it", they say, but.... what resources? There ain't no stinkin resources without a diagnosis.

Therapists, maybe, I guess? Since you don't need a diagnosis to see a therapist. Aside from that..... like. Self diagnosis mainly just gives you mental permission to learn resources to help yourself. Strategies, online spaces like this one, and stuff like noise canceling headphones.

None of those are in short supply.