TikTok, which boasts more than a billion active members, is a community where individuals gather to provide a range of helpful advice. However, with everyone having access to the site, it can also fill up with false material, such as some unfiltered autism content.
Looking at engagement metrics, such as views and likes, for the TikTok videos linked to the "Autism" hashtag, researchers from Drexel University's A.J. Drexel Autism Insitute found that most of the material offered in TikTok videos regarding autism does not correspond with current clinical expertise. The researchers looked at the audience and accuracy of these films and found discrepancies.
As of July 2022, the content of the most popular #Autism videos was independently fact-checked by two coders, with an emphasis on those that revealed details on the condition of autism, such as its causes or symptoms.
Videos were classified as accurate, incorrect, or "overgeneralization," depending on how well their material aligned with the most recent understanding of autism.
Giacomo Vivanti, a co-author, claims that they decided to research TikTok because of how well-known it is; by 2020, it had received more than two billion mobile downloads globally, and by 2021, it was the most popular website.
According to the report, there have been 11.5 billion views of films related to autism. An analysis of the top 133 autism-related videos, with a combined audience of 198.7 million viewers and 25.2 million "likes," revealed that 27% of the videos were deemed factual, while 41% were deemed wrong, and 32% were deemed to be overgeneralized.
Engagement levels between correct and inaccurate/overgeneralized videos did not differ much. Videos produced by medical experts were more likely to include truthful information.
"Given the reach of TikTok autism content, it’s important that stakeholders in autism community, including autistic individuals, family members, and clinicians interfacing with autism, are aware of the unfiltered nature of the information presented. "
- Elisabeth Sheridan, co-author.
Autism misinformation on TikTok
They discovered that, like other social media platforms, TikTok can skew perceptions of autism in two different ways. First, by outright misrepresenting facts; for instance, by asserting that a specific product can "cure autism" to sell it.
And secondly, by ignoring the range of autistic community expressions and overgeneralizing one individual's experience of the autism spectrum. Sheridan adds that many autistic people and their families have voiced worries about the damaging misinformation about autism that has been spread on TikTok.
According to the CDC, brain abnormalities are the source of autism spectrum disorder (ASD), a developmental condition. Individuals with ASD may struggle with confined or repetitive habits or interests, as well as social communication and engagement.
Individuals with ASD may also move, learn, or pay attention in various ways. It is significant to remember that some individuals may exhibit some of these symptoms even in the absence of ASD. That being said, these traits may make life extremely difficult for those who have autism.
People may interact with others and share personal tales on social media sites, and given the popularity of these videos, the team anticipates conducting a further study in the future on the effects of social media on individuals with autism and their families.
The research team concluded that most of the information on the platform appears to be out of alignment with current clinical knowledge, so healthcare providers and other professionals should be aware of the autism-related content shared on TikTok to better interact with the large community of TikTok users.
According to Vivanti, it's critical to keep an eye out for and combat false information that might harm people on the autistic spectrum and their families.
However, it's also critical for the scientific community to understand how the vast community of TikTok users views and experiences autism and how existing treatments for autism are being implemented.
Vivanti concludes: "This would help us address the gaps that lead people to search for answers on TikTok in the first place."
- Journal of Autism and Developmental Disorders. The Reach and Accuracy of Information on Autism on TikTok.
- Business of Apps. TikTok Revenue and Usage Statistics (2023).
- CDC. Signs and Symptoms of Autism Spectrum Disorder.
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