Depending on your age and your lifestyle, TikTok is either a fun app for discovering new dance moves or a tool that drives people toward dangerous trends. The app has one billion monthly active users, which means a fifth of the total internet community is active on this site.
While TikTok certainly has its drawbacks and risks, many people are discovering the benefits of its online content. Teachers turn to TikTok to make learning history or science fun. Accountants define complex tax terms for potential clients. Recently, people are using the app to better understand their disabilities.
ADHDTok is a community in the app where people talk about living with attention-deficit hyperactivity disorder (ADHD), a cognitive and learning disability. In some cases, ADHDTok is helping people get the diagnoses they need. This is good and bad. Here are a few ways TikTok is guiding people to learn more about their health.
TikTok is helping adults diagnose their ADHD
Many adults live with ADHD for years before they are able to put a name to their experiences. They describe feeling like they are lacking certain tools that other people seem to have naturally. Despite feeling different, they aren’t able to place what separates them from their peers. Through TikTok, more people are learning that their experiences are valid and are getting to know the terminology surrounding ADHD.
Emma Frankart Henterly shared her story with Columbus Monthly. She downloaded TikTok at the start of the pandemic to stave off the boredom of staying home. “Within a few weeks, it had figured out my sense of humor, my political leanings, my pandemic hobbies, and even my sexuality,” she writes.
Then the app started promoting videos about ADHD symptoms and adult ADHD cues that often get missed. “Initially, I wrote the videos off. But the more they appeared on my ‘For You’ page, the more I saw myself in them,” says Frankart Henterly.
The videos drove her to consult with a therapist who provided professional screening, diagnosing Frankart Henterly with ADHD.
You can find several other stories like Frankart Henterly’s across the web. People start by watching one video on ADHD and finally feel like the content creator relates to them. They express feelings of relief and validation about their mental states.
“For 23 years my parents, my teachers, my doctor, my psychologist, and my own brain all missed the warning signs, yet somehow it only took that app’s algorithm a few days to accidentally diagnose me,” Matilda Boseley wrote for The Guardian.
These videos are empowering people from all walks of life to start talking about their cognitive abilities and to seek treatment for conditions they suspect they have. Viewers become advocates for themselves and their brains.
TikTok is busting myths about ADHD
One of the most notable elements of the stories shared by people who learn about their ADHD through TikTok is that the majority of articles come from women. Women are significantly underdiagnosed with ADHD. Some people believe that women can’t get ADHD (similar to the misconceptions with autism) but the reality is that it presents differently and women are often better at masking their symptoms to get by.
TikTok has become a platform for women to speak out about their own diagnoses and share with others that this is an issue. As long as women look at the symptoms of men when getting diagnosed, they won’t be able to see ADHD in themselves.
ADHDTok is also reaching more people of color for the same reasons. The diagnostics for ADHD have historically been built amongst young white boys. This lack of diagnosis can have lifelong impacts on the development of children of color. While their white peers receive medication, treatment, and care, children of color are often scolded for their lack of impulse control and labeled as violent.
“He’s going to be labeled as a ‘bad kid’ who is going to get suspended, and probably going to get expelled,” says Dr. Natalie Cort at ADDitude. “And being suspended once or twice is highly associated with becoming involved in the juvenile justice system.”
When ADHDTok reaches more parents, students, and adults of color, it is able to empower these communities to put words to their experiences. This can lead more people to get diagnoses and break down the idea that ADHD is a white male condition.
Democratizing ADHD diagnoses
While TikTok videos can encourage people to meet with health providers to learn about ADHD, this isn’t always an easy process. One woman, Charlotte Colombo, shared her experience trying to meet with a mental health specialist after she suspected that she might have ADHD. It took months to see someone and receive a diagnosis.
“I spent eight months waiting for an ADHD assessment in order to access treatment before finally receiving a diagnosis this June,” says Colombo. “During those months, it was up to me to help myself in terms of finding support, coping mechanisms, and finding names for the behaviors that stopped me from doing what I needed to do. For me, ADHDTok was able to provide this kind of support and fill the gaps and waiting times left by health services.”
Some organizations and companies are working to make it easier for adults to seek out ADHD diagnoses. They don’t want people living with conditions while being unable to put an official name to their experiences. A lack of a full diagnosis from a health professional can prevent people from getting the accommodation they need at work and school. This lack of diagnosis also breeds uncertainty and can cause anxiety in adults who aren’t sure if their experiences actually align with ADHD.
Dozens of websites are live that promise online diagnoses for ADHD. However, these vary in reputability and actual medical science. Some have expensive fees while others accept insurance. Some websites provide telehealth services with licensed medical providers, while others rely on self-reporting tests. Unfortunately, this is where the online world of ADHD diagnosis becomes dangerous. A diagnosis from a disreputable site can cost you money while potentially providing false reports on your cognitive health.
Doctors encourage patients to wait for a professional diagnosis
One of the main concerns about online ADHD diagnoses is that virtual tools aren’t able to consider the full patient and really understand what they are experiencing. No one operates in a vacuum, and ADHD could only be one part of your cognitive existence.
"We're not taking into account all the comorbidities that can parade around as ADHD,” says Dr. Sanam Hafeez, a neuropsychologist in New York City.
Some patients may have other physical or mental health conditions that work alongside ADHD. They could also have symptoms similar to ADHD that are actually caused by other disorders. Hameez frequently sees people who have been diagnosed with ADHD who actually have bipolar disorder. This misdiagnosis is dangerous.
“The stimulants that they use to treat ADHD can actually create a very intense mood response in people with a mood disorder,” she says. This can lead to mania, depression, and even suicide ideation.
While many doctors are happy that more patients are learning about ADHD (providing education and destigmatization to communities) they emphasize that the internet is full of people and companies that are not able to provide safe and effective medical care.
“I am hesitant about self-diagnosis because there are so many things that overlap with ADHD that can look like ADHD,” says Dr. Courtney Pflieger, a private-practice psychologist who also has ADHD. “I want people to feel free to develop suspicions. I want people to have that space to be able to hold the question and not be penalized for it.”
Destigmatization can help more people receive diagnoses
There is one clear benefit of ADHDTok: this corner of the internet is shedding light on the experiences of adults with ADHD. The videos are engaging and are useful to people who notice these symptoms and family members with recently-diagnosed loved ones. The more that people are aware of ADHD and the more comfortable they feel talking about it, the less discrimination and fear people with this disability will experience. Adults with ADHD can become advocates for themselves and for others like them.
Learn more about the stigma of ADHD and how educators and advocates are working to remove it.
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