Before Isabel Pomeroy, a 27-year-old active TikTok user in Petaluma, California, was diagnosed with bipolar disorder, she blamed herself for being different. She often wondered if she was just making excuses for “poor” behavior, like isolating herself from family members or acting differently because of mood swings.
“I think as neurodivergent or [mentally ill] people, we doubt ourselves a lot,” she says.
Pomeroy spent over five years buried in confusion and guilt. At 19-years-old, she was able to get an official diagnosis, and she found some peace.
“When you get an official diagnosis, it just wipes all that away, because you see that you actually had a problem. You were not making it up.”
There’s a shiny term for the way a medical diagnosis can help someone make sense of their past, present and future experiences. It’s “biographical illumination.” In the past, this illumination was provided by the medical world, by doctors. Now, user-created content on social media has changed the landscape of health diagnoses. For better or worse, through algorithms on platforms like TikTok, people are gaining an understanding of conditions like bipolar and autism in a realm outside of conventional medicine.
Meryl Alper, associate professor in the communication studies department at Northeastern, investigates the impact of communication technology, like social media, on society and culture. One of her focuses is the intersection of disability and digital media, and in particular, how one’s personal identification with autism may be impacted by TikTok’s algorithm. From a user realizing that they might be autistic to the creation of new autistic communities on TikTok, the platform has become a source of accessible information and has significant implications for what it means to be diagnosed.
“I [now] think I have autism,” says Pomeroy, “and it’s all been thanks to having content pushed into my algorithm about autistic creators that have their official diagnosis.”
In a 2023 study published in Sage Journals, Alper sought to understand the circular relationship between TikTok and self-identity. The study demonstrates how TikTok has entered the ecosystem of diagnostic technologies, moving beyond the DSM-5 guidebook to, “Are you autistic?” online quizzes.
Alper says studying TikTok requires creativity because “you see a video, and then it’s gone, and you might not ever see it again.” In order to sort through the immense amount of information on the app, Alper and her team harnessed the power of hashtags, which are a way to organize people around a topic.
They conducted TikTok searches for common autism hashtags like “#autisktok” and “#actuallyautistic.” The latter refers to TikToks created by autistic users discussing topics related to autism. Using “#actuallyautistic,” Alper found an account on Instagram that had curated and reposted 1,000 videos originally published on TikTok.
A significant portion of the Instagram account’s reposts were from BIPOC and LGBTQ+ creators. This made the account ideal for Alper and her team to use in the study — they wanted to make sure the conversation around autism represented a large swath of the population.
Alper and her team used code to gather and organize data from this account. They also used manual methods, like writing descriptions of what each TikTok video was.
“People write captions, people use hashtags, but [TikTok] is a medium for sharing videos,” says Alper, so it was necessary to capture the actual content of the videos, too.
The platform’s “For You Page” reflects an individual user’s algorithmic identity. TikTok’s algorithm curates the videos featured on this page based on what a user has interacted with in the past as well as what videos their followers and following have viewed. When a user receives many videos related to autism, it can inform their identity, leading to a biographical illumination informed by TikTok’s algorithm — a “platformed diagnosis,” Alper calls it.
By looking at the comments on autistic creator’s videos, the study shows that some people framed the app as one of several social influences in their biographical illumination.
“I legit found out through TikTok and by my sister I was autistic,” one user comments on an autistic creator’s video in the study’s sample.
At the same time, users who didn’t identify with autism were also being shown autistic creators’ TikToks, by the algorithm.
Alper’s study highlights how algorithms can be sense-making tools for identity work, but ones with questionable predictive power. The videos that the algorithm curates on a user’s “For You Page” may not always be aligned with how the user views themselves.
Medical misinformation and pseudo-diagnoses
While there is concern about medical misinformation on TikTok, content on the platform has made information about autism diagnoses more accessible, Alper explains. This is no small thing, especially when looking at healthcare inequities across different demographics.
“The role of gender, race and ethnicity in terms of who has access to the resources and who has the know-how to navigate the healthcare system” plays a role in getting an official diagnosis, says Alper.
The ratio of men to women with an official autism diagnosis is around 3:1. Pomeroy says that “[women] end up having higher masking than men usually, and it’s much harder to diagnose.” Masking is a coping tool where an autistic person suppresses their autistic traits in order to be perceived as neurotypical, but it can have a large emotional toll on the person later.
A 2020 article published in the Journal of Autism and Developmental Disorders discusses how masking in females in order to blend in with societal norms may be the cause of common autism misdiagnosis, or lack of diagnosis, until adulthood.
Savannah Smith, a TikTok user in Farewell, Michigan, started thinking that she had autism at around 18-years-old. Everytime Smith took her concerns to medical professionals, they never diagnosed her with autism. She felt dismissed by doctors.
“I really just wish I could have gotten support growing up,” says Smith, adding that getting an official diagnosis “just seems like a waste of time at this point.”
Since many people aren’t able to or don’t want to get an official diagnosis, the study found that TikTok can provide some of the same relief and understanding. This calls into question whether formal diagnoses are even necessary, when helpful “hacks” and tips about living with autism are readily available on TikTok.
However, content on TikTok isn’t a substitute for the accommodations that come with an official diagnosis, says Alper. Academic accommodations might include having deadline extensions, and employment accommodations might include changing the immediate workplace environment to suit the autistic individual’s needs. Financial support may also be obtained from certain organizations, but only with an official diagnosis.
Alper points to another issue, which is the extent to which TikTok’s algorithm brings people into a conversation on autism that they don’t resonate with. Sometimes, the videos that show up on a user’s page may not be aligned with how the user views themselves. If a person is being shown videos about autism but they don’t think they are autistic, this makes the user question why the algorithm is recommending these videos in the first place, she says.
The study found that certain TikTok users felt like they were being surveyed in an unethical way. “I feel like the algorithm just diagnosed me,” a user commented on an autistic creator’s video.
For some, this created feelings of anxiety, as if the algorithm and its data collection practices had crossed the boundary of the users’ personal psychological space. Alper argues that this extraction of data about a person’s usage on the platform and the way it is served back to individuals introduces a consent question.
Community
Research shows that when autistic people know other autistic people, they have less anxiety, are more confident about getting resources and are less isolated.
TikTok can shape a person’s likelihood of pursuing a diagnosis or help them embrace a diagnosis. One user’s comment on an autistic creator’s video says, “Idk if this makes you feel better, but I just found your channel and it’s giving me the confidence to seek out an autism diagnosis:).”
One user provides an ongoing update on the status of their diagnosis: “i have a follow-up appointment to double check I’m autistic on the 6th of Feb… wish me luck!”
For many of the users commenting and viewing these TikToks, the communities created in comment sections might be friendlier and more supportive than what they have in their physical lives, Alper says.
Pomeroy says “that self-diagnosis and that support of the community is so key,” because even a knowledgeable and well-meaning doctor can’t understand a patient’s day-to-day based on a one-hour appointment.
It’s not just people with autism, or people who think they might have autism, who see #autisktoks. The algorithm caters content from autistic creators to those who are not on the spectrum as well.
“Regardless of whether you have autism or not, you need to hear different perspectives, even if you don’t have anything to do with it yourself,” Smith explains. Having autistic content show up on neurotypical peoples’ pages also helps to normalize being neurodivergent, as everyone has more exposure to this experience of living.
Alper echoes this point, saying “people can be exposed to this content and still have ableist opinions … We just know that there’s more people being exposed to this content that wouldn’t normally,” says Alper.
Through the study, Alper and her team also observed that the face of autism is changing. She explains that there’s this notion of autism occurring only in the cisgender white male, like Sheldon from the “Big Bang” or Sam Gardner from the show “Atypical.”
“Characters who appear as autistic in mass media have been quite narrow,” Alper says.
For many reasons, a more diverse range of autistic people are expressing themselves on TikTok, becoming the representation for their communities by “creating the content that [they] want to see,” says Alper. One reason for this is that “the barrier to entry is a lot lower.”
“TikTok has that home-video style,” Alper says, not requiring specialized equipment or complicated software to create quality content. TikTok has fostered a DIY culture.
Alper wants to add complexity to the discussion around diagnosis by better understanding the context of users finding videos and then going to clinicians and asking about a diagnosis. In 2023, she published an MIT Press book, “Kids Across the Spectrums: Growing up Autistic in the Digital Age,” which delves into the media usage of more than 60 neurodivergent children from a smattering of racial, ethnic and socioeconomic backgrounds.
Moving forward, Alper wants to expand her research about TikTok to other conditions. She’s received a grant from Northeastern University to study discussions around food, eating disorders and social media.
“There’s all sorts of research saying that women with disordered eating are more likely to be neurodivergent, but the tools [to support women] aren’t catered to this group of people.
In a similar way to online platforms providing support for autistic people, Alper thinks TikTok and its algorithms could serve as a recovery tool for people with eating disorders.
But, just like many, she is still hesitant about how central a role it might play.
“It’s kind of scary to think that a computer algorithm video isn’t trained. There is no empathy,” Alper says. “It could be useful, but in its own way, could be harmful, if you’re looking for a human connection.”
Story from the Science Media Lab.
Last Updated on July 1, 2024