TikTok videos on #Autism are mostly inaccurate, study says. Is there more to it?
Author: Eline van Hardeveld
Social media platforms like TikTok have been used to share information about mental health, like autism. Through this big reach, some people have realized that they might be autistic. But how scientifically accurate are these videos? A Drexel University study says about only 30% are, raising justly concerns but also admitting nuances.
To assess the accuracy of TikTok videos on Autism Spectrum Disorder (ASD), Dr. Giacomo Vivanti and his team created a new TikTok account to avoid a biased algorithm. They took 133 of the most viewed videos under the hashtag autism that were considered ‘informational’ not ‘personal’. This meant that a video had to be talking about autism in general, not the personal experiences of autistic individuals.
Two coders independently reviewed the videos. They marked a video as accurate, inaccurate or overgeneralized, meaning specific statements were attributed to all autistics. This was based on current scientific knowledge about autism. The coders were supervised by a senior clinician and dr. Vivanti (study senior author), both having about 20 years of experience with ASD.
In perhaps a surprising twist, the study found that out of all the videos, 27% was labeled as accurate, 41% inaccurate and 32% overgeneralized. By looking at descriptions of creator’s profiles, they found that 126 videos were uploaded by non health care professionals; this included 95 videos by autistic creators. Only 7 videos were created by health care professionals and seemed to be accurate more often.
More than just numbers
The researchers state being worried about misinformation and urge professionals to spread accurate information about autism on TikTok. “Professionals providing diagnostic or intervention services might benefit from familiarizing themselves with ‘trending topics’, so that constructive conversations about needs and supports for each individual can be established,” dr. Vivanti says in the discussion.
Also included in the discussion are some nuances, like the study’s relatively small sample size. The researchers explain that their study did not account for engagement on videos; other people commenting on videos saying they are inaccurate. On top of that, they found most videos under #Autism to be personal ones. The research team acknowledges that TikTok offers the opportunity to share personal experiences of autistic people and their friends and family. This allows them to connect and reduce stigmas against autism.
Dr. Vivanti ends the discussion saying: “Finally, although we strove for objectivity, fact-checking is not an exact science, especially in the context of an area in which evidence is constantly evolving,” calling for more refined follow-up research. At last, he notes that their findings on misinformation about ASD on TikTok is consistent with research on other platforms and conditions.
Social media should be consumed critically, especially when it comes to important and nuanced topics like mental health. It is good to keep informed about what professionals say. That way, TikToks about autism can be viewed more responsibly and autistic people or people close to autistic individuals can find community on the social media app.