ABSTRACT
Background: TikTok is a popular social media site for connecting with others online where many users also access and share health-related information. Previous studies have characterized information shared about specific disabilities on TikTok, but descriptions of autism-related content are lacking. Understanding the information shared about autism on TikTok is important to understanding health communication in this space, the lived experiences of autistic people, and the role that social media platforms play in building community through connection, understanding, and inclusion. Methods: We used an open-source data scraper to identify and download videos with at least 1 million views and that used the hashtag #autism from TikTok. Using a joint inductive and deductive approach, we performed a content analysis of videos. We identified six content topics that described video content (e.g., positive social interactions and features of autism), and three categories that described video purpose (e.g., educational, experiential, and observational). We used descriptive statistics to describe characteristics of who was in the TikTok videos. Results: We analyzed n = 678 videos. The most common content topic of TikTok videos was features of autism (39.7%), followed by marginalization (25.4%). Most videos were categorized as experiential (61.4%) or observational (31.4%) rather than educational (7.2%). Approximately 65.5% of videos featured an autistic adult and 22.6% featured an autistic child. Among videos featuring an autistic person (n = 594), most autistic people were perceived to be White (87.0%) with similar numbers of feminine (52.9%) and masculine (44.8%) presenting autistic people. Conclusions: Highly viewed #autism TikTok videos primarily share autistic people's individual experiences rather than providing general education about autism. However, autistic Black, Indigenous, and people of color may have difficulty finding others that represent them along both disability and racial dimensions. Future research should investigate autistic people's motivations for using TikTok, and how #autism content shapes social discourse about autism.
What was the purpose of this study?: We wanted to describe information about autism that is highly viewed on TikTok to better understand what people see, hear, and learn about autism online. Autism content on TikTok can help autistic people find others with similar experiences and build community and can shape the way nonautistic people view and interact with autistic people. What did the researchers do?: We downloaded videos from TikTok that used the hashtag #autism and had at least 1 million views. We watched the videos and assigned each video a content topic and a category. Content topics described the content of the video and categories described the purpose of the video. What were the results of the study?: We included 678 videos grouped into six content topics: (1) features of autism, which included videos about restrictive and repetitive behaviors, social and communication differences, associated core experiences, and talents; (2) marginalization, which included videos about lack of access, stigma and misconceptions, and inspiration porn; (3) supports, which included accommodations, services and interventions, and caregiving; (4) positive social interactions; (5) daily life; and (6) miscellaneous/other.The most common content topic was features of autism (39.7%), followed by marginalization (25.4%). The least common content topic was positive social interactions (5.2%). The most common category of videos was experiential (61.4%), followed by observational (31.4%) and educational (7.2%). More than half of the videos included an autistic adult, and about a quarter included an autistic child. Among the videos that included an autistic person, most autistic people were perceived to be White, and there were similar numbers of masculine and feminine-presenting autistic people. What do these findings add to what was already known?: We know that many autistic people like to communicate online and use social media. These findings show that most of the content about autism on TikTok involves autistic people sharing their life experiences instead of providing "facts" or education about autism. Because autistic people from diverse backgrounds were less often present in videos, these individuals may have difficulty connecting with each other on TikTok. What are potential weaknesses in this study?: We did not download TikTok videos while logged into a user account, so the videos we included may be different than the videos shown to an individual user who searches #autism. The way that we categorized videos may have been different from how others would have done so. We did not include less-viewed videos in the study, which could have had different content topics. Our perceptions of the gender, race, and ethnicity of people in videos may not reflect how they would self-identify. How will these findings help autistic adults now or in the future?: These findings may be helpful for autistic adults who are looking for online community building with other autistic people. Because many autistic people shared their lived experiences, these findings may promote understanding and acceptance of autistic people by nonautistic people.
