Content related to autism on TikTok appears to have a significant and widespread audience but the majority of the information provided in these videos is not aligned with the current scientific understanding of autism, according to new research published in the Journal of Autism and Developmental Disorders.
Autism spectrum disorder (ASD) refers to a group of complex neurodevelopmental disorders that affect an individual’s social interaction, communication skills, behavior, and interests. ASD encompasses a wide range of symptoms and levels of impairment, which is why it is referred to as a “spectrum disorder.” Understanding and disseminating accurate information about autism is crucial to help individuals with autism, their families, and society at large.
There is growing concern about the unfiltered nature of the content hosted by internet platforms, including social media. The study specifically focuses on TikTok because it is a highly popular platform with a large user base and because users frequently create and share videos containing healthcare-related information, including autism.
“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,” said study author Giacomo Vivanti, an associate professor at Drexel University, the leader of the Early Detection and Intervention research program at the A.J. Drexel Autism Institute, and author of “Clinical Guide to Early Interventions for Children with Autism.”
“Many practitioners have the perception that information on autism on social media can have a very broad reach – however, it can also contribute to disseminating misinformation. We were interested in TikTok in particular because of its popularity – it surpassed 2 billion mobile downloads worldwide by 2020 and was ranked the most popular website as of 2021.”
The researchers conducted a comprehensive study to assess the reach and accuracy of informational content about autism on TikTok, a popular social media platform. In the first step, they took precautions to avoid algorithmic bias by creating a new TikTok account. They then conducted a search using the “#Autism” hashtag on July 29th, 2022, and found a substantial number of videos related to autism. To ensure the quality of their dataset, they applied initial exclusion criteria, which removed non-English videos, those unrelated to autism, and duplicate content, resulting in 365 eligible videos.
With the eligible videos in hand, the researchers proceeded to identify and select videos that were specifically designed to provide information on autism, which they termed “informational videos.” These videos were distinguished from “personal experience” videos that shared individual stories and did not attempt to provide general information about autism. This selection process yielded a total of 133 informational videos for further analysis.
The critical next step involved fact-checking and coding of these 133 videos. Two independent coders meticulously reviewed the content and classified each video as accurate, inaccurate, or containing overgeneralization based on its alignment with established scientific knowledge regarding autism. The researchers adopted a conservative approach in their coding, marking statements as “inaccurate” only when they unequivocally contradicted current scientific understanding.
The researchers found that the “#Autism” hashtag had generated a staggering number of views by the time of data collection. A significant majority of the informational videos (73%) contained either inaccurate information or overgeneralized claims about autism. These inaccurate or overgeneralized videos received similar levels of ‘likes’ and views as the accurate ones (144,584,203 views and 16,724,125 likes for inaccurate or overgeneralized videos vs. 54,111,743 views and 8,468,277 likes for accurate videos).
“TikTok videos associated with the ‘#Autism’ hashtag accrued 11.5 billion views collectively, an extremely broad reach,” Vivanti told PsyPost. “We fact-checked the 133 top videos providing informational content on autism, which totaled 198.7 million views and 25.2 million likes, and showed that the majority of videos provided information that was patently false, or overgeneralized, i.e., experiences related to a single person were used to advance claims about how autism should be diagnosed or conceptualized in general.”
“So, similar to other social media channels it looks like TikTok can bias understanding about autism in two ways (1) by providing blatant misinformation (for example, claiming that a certain product “cure autism”), or (2) by overgeneralizing individual experiences to the entire autism spectrum and not representing the entire spectrum of manifestations within the autistic population.”
Furthermore, the researchers observed a notable distinction between creators. Videos produced by health care practitioners were more likely to be accurate compared to those by autistic creators and ‘other’ creators. This discrepancy suggests the need for increased awareness within the autistic community, professionals, and practitioners about the unfiltered nature of information related to autism on TikTok and other social media platforms.
“There are also many videos on TikTok that anecdotally document the lives of autistic people and their families, without the claim of disseminating knowledge on autism as a condition in general,” Vivanti said. “These point to the unprecedented opportunity offered by TikTok to create a content space where autistic individuals and family members can share their personal experiences with many people, which can advance knowledge on lived experiences (which is separate from scientific knowledge, but important too) and help reducing stigma.”
The study, “The Reach and Accuracy of Information on Autism on TikTok“, was authored by Diego Aragon-Guevara, Grace Castle, Elisabeth Sheridan, and Giacomo Vivanti.
