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.
Keywords: autism, TikTok, social media
Community brief
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.
Introduction
Social media platforms are a primary means for communicating and community-building online and are used by as many as 70% of U.S. adults.1 One of the most common video-based social media platforms is TikTok, which is now used by nearly a quarter of U.S. adults.1 Content shared on TikTok is diverse and includes well-known viral dance challenges and videos of animals, but accessing and sharing health-related information is common.2–4 Health care providers have suggested that sharing this type of information on TikTok has potential for high utility in multiple health care contexts such as disseminating public health information, but it may also confer some risks.
Sharing health information on social media may help individuals identify health conditions and disabilities they have and seek needed services and supports.5,6 However, reliable sources of information are difficult to verify on TikTok.7,8 Thus, it is necessary to understand the content of health-related information shared on TikTok, and efforts to achieve this understanding are underway. For example, researchers have characterized information provided in diabetes and attention-deficit/hyperactivity disorder (ADHD)-related videos on TikTok,9,10 and on other social media platforms.11,12 However, research describing autism-related content on TikTok is lacking.
Autism-related content shared on TikTok has far-reaching implications but is particularly important considering societal perceptions of autism and the acceptance and well-being of autistic people. Misinformation about autism, such as believing that vaccines cause autism or that autistic people are incapable of empathy, is common despite established evidence that these beliefs are inaccurate.13,14 As a result, some individuals, either intentionally or unintentionally, may share information on TikTok that is inaccurate or potentially harmful to autistic people.
These false beliefs and long-standing harmful perceptions of autism as a “disease” to be “cured” may be stunting the growth of the neurodiversity movement, which recognizes autism as a natural and valued part of human variation.15–17 The neurodiversity movement has also sparked an increase in online discussions about celebrating autistic ways of being. Social media serves as a unique platform where autistic people can share their experiences with a large audience of viewers around the world by “going viral.” Viral autism content can reach people who may otherwise not have engaged with this kind of material, positioning the platform as a mechanism through which to increase acceptance of autistic people.
However, the extent to which discourse on social media supports new equitable understandings about autistic people is unclear. Thus, characterizing autism-related content on TikTok will reveal what millions of users across the globe hear, see, and learn about autism online. Engagement with autism-related content can influence how nonautistic people perceive and interact with autistic people, underscoring that understanding discourse about autism on social media is relevant to the health and well-being of autistic individuals. Engaging with autism-related content can also foster self-understanding and community among autistic people.
The utility of social media platforms for building community among groups with shared experiences is a well-documented benefit.18–20 Community building online is particularly important for autistic people who are often socially isolated relative to nonautistic peers and may prefer to communicate online.21–24 As a result, TikTok is a potentially useful tool for autistic people to share their lived experiences, build community with others, develop their autistic identity, provide education about autism, and destigmatize autism. In this study, our primary objective was to describe highly viewed TikTok videos with #autism to better understand the extent to which these videos are supportive and accepting of autistic people. Our secondary objective was to understand the extent to which videos were representative of autistic people of different demographics. This study serves as an important first step in understanding information-sharing about autism on this popular social media site.
Methods
Data acquisition and video selection
We used an open-source TypeScript program (TikTok-Scraper) to download and extract videos and metadata from TikTok. We extracted videos with #autism on March 28, 2022. On social media, hashtags are used to categorize content and allow users to follow content related to specific hashtags. Data extracted using this tool included shares, likes, comments, and video seconds. Videos were included in this analysis if they used #autism and had >1 million views. Figure 1 shows our video extraction and selection process. Videos were excluded if they were in a language other than English, or if the link directed to a video that was no longer available.
FIG. 1.
Flowchart of video selection.
Qualitative data and analysis
Using a combined inductive and deductive approach, we developed a codebook to guide content analysis of the TikTok videos, which is a common approach to characterize information sharing (e.g., attitudes, views, and interests) among unique groups or communities online.25–27 Three study team members with clinical expertise focused on and/or lived experience related to autism (M.S., L.B., and B.H.) watched the same 50 videos and met to develop the initial codebook based on preliminary coding of the videos and pre-existing knowledge of autism content on TikTok (deductive).
The first draft of the codebook comprised categories and content topics and initially included three categories and 13 content topics, each with a brief narrative description. Organization of videos into categories was informed by similar methods often used in analysis of health-related videos.10,28,29 Categories captured the purpose of the video and included “educational,” “experiential,” and “observational.” Educational videos provided education about autism or the autism community at large (e.g., discussing diagnostic criteria).
Experiential videos had verbal or text commentary to share a specific individual's or group's experiences that was not intended to be applied to the broader autism community (e.g., an individual sharing their experience with enteroception or disclosing an autism diagnosis). Observational videos did not contain any commentary designed to share an individual's or group's experiences. Content topics described the video content (e.g., daily life and positive social interactions) and reflected patterns of meaning in the data.30 Narrative descriptions corresponding to each content topic guided distinguishing between them.
We used common qualitative methods involving coding of subsets of data, discussion, and reanalysis to refine the codebook (inductive).31 To pilot test the codebook, three study team members (D.G., D.R., and M.K.H.) who did not develop the initial codebook independently watched 100 videos (half of which were used to develop the initial codebook) and assigned categories and content topics to each video. After coding was completed, all study team members met to clarify coding strategies and discuss needed modifications to the codebook (e.g., modification of narrative descriptions, addition of new content topics, and collapsing content topics). The same 100 videos were then recoded using the updated codebook. The codebook was updated a final time after this round of coding. The final codebook (Table 1) contained three categories and six content topics; three of the content topics comprised multiple subtopics. Categories included in the final codebook were the same as those in the original codebook.
Table 1.
Codebook of Content Topics and Categories
| Content topic | Description | Example |
|---|---|---|
| Features of autism | ||
| Diagnostic features: RRBs | Depicts characteristic features of autism such as repetitive movements, use of objects, insistence on sameness, intense interests, or sensory processing differences | Discussing special interests and benefit of stimming to handle sensory processing |
| Diagnostic features: social/communication | Depicts challenges in areas such as social-emotional reciprocity, nonverbal communication, eye contact, use of gestures, using facial expressions, or developing/maintaining relationships | Individual describing challenges in recognizing facial expressions of others |
| Associated core experiences | Characteristics or experiences common among autistic people such as meltdowns that are not diagnostic features | Sharing difficulties with emotional regulation or executive functioning |
| Gifts/talents | Autistic person showing an activity at which that they are particularly talented | Drawing detailed pictures of animals |
| Marginalization | ||
| Lack of access | Describing lack of/absence of accommodations, support, or access | Parent showing that school is not using child's assistive communication device |
| Stigma/misconceptions/discrimination | Depiction of response to encountering stigma, discrimination, or challenging misconceptions | Providing examples of stigmatizing comments that are often made about autistic people |
| Inspiration porn | Nonautistic person talking about autistic person in a way that is meant to be inspirational for other nonautistic people, or using the autistic experience for inspiration | Performer on the street hugging autistic child; using autistic person's excitement for inspiration |
| Supports | ||
| Accommodations | Demonstrating or describing accommodations or supports that promote access, inclusion, and integration in daily life | Description of sensory friendly accommodations in public; video tour of autistic adult's adapted living space |
| Services/interventions/treatments | Related to autism diagnosis, services, or interventions provided by a health care professional or paraprofessional | Sharing individual experience trying to get an autism diagnosis |
| Caregiving | Assisting someone with activities of daily living or providing social/emotional support beyond what would be expected for a nonautistic peer | Sibling helping adult autistic brother drink from cup |
| Positive social interactions | Communicates positive experiences with love, relationships, or affection | Friend at the playground demonstrating patience with an autistic child |
| Daily life | A video that does not fit into any other content topic and depicts an autistic person's daily life. A neutral social interaction may be included. | Packing a lunch; going fishing with family |
| Other/miscellaneous | Link between video content and autism is unclear or nonexistent | Recording of person playing a video game |
| Category | Description | Example |
| Observational | Getting a glimpse at someone's life or a particular situation. Does not contain any commentary (verbal or text) that is designed to share a specific individual's (or group's) experiences | Stimming, opening a present, drawing a picture or doing another creative activity, having a meltdown |
| Experiential | Contains commentary (verbal or text) designed to share a specific individual's (or group's) experiences; may have a declarative statement but it is specific to a person | Recounting experience of sharing diagnosis with family members |
| Educational | Contains commentary (verbal or text) explicitly about autism or the autism community; can include spreading awareness of autism and features of autism; commentary is designed to educate people | An autistic person describing features of autism and how autism looks different in different people |
RRBs, restrictive and repetitive behaviors.
Using the codebook, three study team members, called coders, independently coded the videos. Each video was coded by two coders. Few videos evinced multiple categories and content topics, and among those that did, one category and content topic stood out as primary relative to the other(s). Thus, each video was assigned one mutually exclusive category and one mutually exclusive content topic. Coders were instructed to make category and content topic assignments based strictly on perceived purpose of video content (i.e., minimizing influence of pre-existing knowledge about autism). Next, coders (D.G., D.R., and M.K.H.) met to discuss their coding and determine a final category and content topic for each video. All study team members met to view and discuss n = 9 (1.3%) videos for which the coders could not agree on a category and n = 24 (3.5%) videos for which the coders could not agree on a content topic. Upon discussion, team members achieved consensus for category and content topic assignments for all videos.
Quantitative data and analysis
In addition to assigning categories and content topics to each video, coders recorded who was in the video (autistic adult, autistic child, parent of autistic child, etc.), who posted the video, and perceived race, ethnicity, and gender of the autistic person in the video (if relevant). Perceptions of whether someone in the video was autistic was informed by the person who posted the video stating verbally that they were autistic, using #ActuallyAutistic or another relevant hashtag, or including text to this effect. Because content creators do not systematically self-identify age, gender, race, or ethnicity characteristics in their videos or profiles, we relied on coders' perceptions of these characteristics, which is a method that has been used previously in video content analysis.32,33
We consulted with a diversity, equity, and inclusion specialist at our institution who recommended that we include these data to provide context regarding who creates #autism content on TikTok. Without coders' perceptions of these characteristics, this context would otherwise have been absent in this study, preventing understanding the extent to which highly viewed #autism content is representative of people with different demographic characteristics. Coders often used text, hashtags, and/or audio in the video to inform their perceptions of demographic characteristics. For example, some individuals used text or audio to overtly state their gender or racial/ethnic identification.
However, because this was not the case in all videos we use the terminology of “presenting” gender, race, or ethnicity. Race and ethnicity were defined in our study in a manner consistent with the U.S. Census Bureau and National Institutes of Health.34,35 Perceptions of whether an individual was an adult versus a child were informed by the individual's appearance, and text, audio, and/or video activities that could reasonably associated with an adult versus a child (e.g., a toddler playing with toys at home). Demographic information of people included in TikTok videos and video characteristics were described with descriptive statistics.
This study was reviewed by the Institutional Review Board at The Ohio State University and was determined to be IRB-exempt due to use of publicly available data (IRB exemption #2022E1120).
Results
Description of content topics
We included n = 678 TikTok videos in our analysis with >1 million views. The most common content topic of TikTok videos was features of autism (39.7%), followed by marginalization (25.4%). The least common topic was services/interventions (0.9%). Videos about accommodations had the highest median number of views (3.1 million), and videos about lack of access had the highest median number of shares (4833). Additional video characteristics by content topic are provided in Table 2.
Table 2.
Characteristics of TikTok Videos by Content Topic and Category
| Content topic | Videos n (%) | Viewsa Median (IQR) | Shares Median (IQR) | Likesa Median (IQR) |
|---|---|---|---|---|
| Features of autism | 269 (39.7) | 21 (14–37) | 2623 (1082–8244) | 3.3 (2.4–5.2) |
| RRBs | 113 (16.7) | 19 (14–32) | 1921 (969–5600) | 3.1 (2.3–4.5) |
| Social, communication | 55 (8.1) | 20 (14–35) | 2900 (1291–7722) | 3.2 (2.3–5.0) |
| Associated core experiences | 58 (8.6) | 26 (15–42) | 3393 (1107–11,200) | 3.7 (2.5–6.2) |
| Gifts/talents | 43 (6.3) | 26 (14–51) | 2623 (1374–12,200) | 3.9 (2.2–7.7) |
| Marginalization | 172 (25.4) | 18 (13–32) | 2060 (853–6254) | 2.8 (2.2–4.7) |
| Inspiration porn | 78 (11.5) | 18 (14–26) | 1356 (693–2524) | 2.8 (2.2–4.4) |
| Lack of access | 7 (1.0) | 12 (11–28) | 4833 (379–7443) | 2.0 (2.0–3.9) |
| Stigma, misconceptions, and discrimination | 87 (12.8) | 18 (13–38) | 4338 (1294–8177) | 3.0 (2.2–5.2) |
| Support | 92 (13.6) | 25.5 (16–41.5) | 1.610 (710–4330) | 3.9 (2.7–5.8) |
| Accommodations | 73 (10.8) | 31 (18–43) | 1878 (729–4387) | 4.4 (2.9–6.0) |
| Caregiving | 13 (1.9) | 18 (13–24) | 878 (672–1421) | 2.8 (2.1–3.5) |
| Services, interventions, and treatments | 6 (0.9) | 21 (14–41) | 1947 (1594–2402) | 3.2 (2.3–5.6) |
| Positive social interactions | 35 (5.2) | 30 (18–52) | 2451 (1053–5451) | 4.3 (2.8–8.1) |
| Daily life | 46 (6.8) | 22 (17–39) | 2587 (783–5558) | 3.4 (2.7–5.5) |
| Other/miscellaneous | 64 (9.5) | 21.5 (15–40.5) | 4301 (979–13,050) | 3.4 (2.4–5.9) |
| Category | Videos n (%) | Viewsa Median (IQR) | Shares Median (IQR) | Likesa Median (IQR) |
|---|---|---|---|---|
| Observational |
213 (31.4) |
21 (15–38) |
2210 (994–5778) |
3.3 (2.4–5.3) |
| Experiential |
416 (61.4) |
21 (15–40.5) |
2258 (823–6560) |
3.4 (2.4–5.7) |
| Educational | 49 (7.2) | 16 (13–29) | 6120 (2586–11,400) | 2.61 (2.1–4.3) |
In hundreds of thousands.
IQR, interquartile range.
Features of autism
Diagnostic features: restrictive and repetitive behaviors
These videos feature repetitive behaviors/stimming, intense interests, and differences in sensory processing. For example, one autistic adult shared how they and many other autistic adults rewatch their preferred television show(s), which may be out of a need for routine/structure, stimming, or an intense interest. Another autistic adult described their intense interests of painting and insects and how they leverage this as a source of income by selling insect paintings. Caregivers often recorded their children during playtime and daily activities or described their child's need for routines and structure. For example, in one video, a caregiver recorded their child throughout the day and commented that their movements (e.g., head shaking, hand flapping, and toe walking) were signs of autism. Another caregiver video described needing to wait until their child was asleep to clean and repair their favorite toy.
Diagnostic features: socializing and communication
These videos feature experiences with communication (e.g., nonverbal communication, eye contact, and literal use of language) and developing and maintaining relationships. Some autistic adults posted videos to educate viewers about how to better communicate with autistic people (e.g., avoiding abstract use of language). Autistic adults often shared that they practiced communicating in ways that were not natural to them to “fit in” with nonautistic people. In one video, for example, an autistic adult practiced facial expressions in the mirror. One individual posted a video about how understanding her autistic partner's ways of communicating was important for them in working together to care for their child. Some videos were posted by caregivers who described their child's communication habits or needs. For example, one caregiver recorded their child's specific way of asking for music volume to be turned up in the car.
Associated core experiences
These videos capture characteristics or experiences common among autistic people, but that are not diagnostic features (e.g., challenges with emotional regulation).36 For example, one autistic adult's video recorded different things they do while experiencing neurodivergent burnout. In other videos, autistic adults discussed common experiences such as learning skills (e.g., driving) at different ages than nonautistic peers, or having challenges with perceiving body states (e.g., hunger and needing to go to the bathroom). Videos of autistic children included recordings of meltdowns or common co-occurring health problems such as seizures. In some cases, caregivers' videos documented their child's “firsts” such as first time saying “I love you” or a child taking their first bite of solid food.
Gifts/talents
These videos featured autistic peoples' gifts and talents. Autistic individuals typically did not have speaking roles in these videos, but some videos contained text commentary about the autistic person (e.g., the extent to which they communicate verbally). Videos often showed an autistic person drawing, engaging in other art activities (e.g., photography), or dancing. For example, in a series of videos, an autistic adult quickly drew detailed sketches of animals suggested by viewers on TikTok.
Marginalization
Lack of access
These videos demonstrated a lack of or absence of accommodations, support, or access for autistic people in the community. For example, an autistic woman posted a video discussing differing presentations of autism by gender and resultant disparities in access to autism diagnosis. Other videos were about issues with access to employment. In one video, an autistic individual described how their job was not accommodating of their sensory needs as an autistic person. Similarly, an autistic man described how his communication style (e.g., asking many questions) was a barrier to employment. A caregiver recorded a video about how their autistic child's assistive communication device was not being used by their child's school.
Stigma/misconceptions/discrimination
These videos involved autistic people being marginalized by encountering or reacting to stigma or discrimination, or challenging misconceptions about autism. We defined stigma as viewing autistic people negatively (e.g., viewing autistic people as problematic, unfortunate, or miserable). For example, an autistic adult posted a video describing how they were told that they should not have children so that they do not “pass on” their genetics. We defined misconceptions as inaccurate beliefs or understandings about autistic people. For example, many autistic adults posted videos describing how nonautistic people did not believe that they were autistic because of the misconception that autism presents consistently in all people.
Another example of misconceptions is a video where an autistic woman re-enacted a conversation with an individual who believed that people with strong communication skills could not be autistic. Other autistic adults posted videos challenging misconceptions about autistic people, such as the misconception that they are not sexually active, or that they have few strengths. We defined discrimination as the unjust treatment of autistic people on the basis of autistic characteristics or an autism diagnosis. In one video, for example, an autistic adult described how their teacher scolded them for fidgeting during class and told them to sit on their hands if necessary.
Inspiration porn
These videos were mostly posted by caregivers and captured ableist, low expectations of autistic people, combining them with a seemingly positive message, with the intent to inspire neurotypical people.37,38 Videos often depicted an ordinary life experience but emphasized that the content was special or interesting because the individual in the video was autistic and not because the content was special in and of itself. For example, videos captured autistic people experiencing or reacting to ordinary life events such as attending school dance, participating in a talent show, leaving home to spend time with a friend, listening to music at a live theater performance, or greeting a family member coming home from work. These videos are hallmarked by spoken words, a caption, or text that, when combined with visual content, was intended to uplift or inspire neurotypical people. Other videos depicted a neurotypical person doing something nice for an autistic person (e.g., giving them a hug), and being praised for it.
Supports
Accommodations
These videos featured accommodations or supports that promote autistic people's access, inclusion, or integration in the community. Most videos in this category were posted by autistic adults and were descriptions of the items that they used (e.g., noise canceling headphones and fidget toys) to help manage sensory processing differences. Other videos described how autistic adults or their family members modified living spaces or environments to be more accommodating of the autistic individual's capacity to live independently or sensory needs. For example, one video posted by an autistic adult showed modifications made to their wedding (e.g., an outdoor meal to diffuse noise) to reduce sensory and social stress. Caregivers also posted videos demonstrating supports that they used for their autistic children, such as a bed designed to help prevent elopement during the night.
Services/interventions/treatments
These videos were related to autism diagnosis, services, or interventions provided by a health care professional or paraprofessional. There were few videos with this content subtopic. Some videos were recorded by autistic adults who re-enacted encounters with health care professionals when trying to get an autism diagnosis. Caregivers posted videos recounting their experiences working with providers who helped their autistic children with challenges with speech. For example, a caregiver shared how working with a speech language pathologist helped her autistic child to learn strong verbal communication skills.
Caregiving
These videos showed an individual assisting an autistic person with activities of daily living or providing social/emotional support beyond what would be expected for a nonautistic peer. For example, a caregiver recorded how they assisted an autistic adult with getting into bed, and in another video an individual helped their autistic adult sibling take a drink from a cup. One individual recorded a video as they went to check in on an autistic adult sibling who was sick. Caregivers recorded videos as they completed caregiving tasks, such as helping an autistic child transition to bedtime, or sitting with an autistic child who needed emotional support.
Positive social interactions
These videos showed autistic individuals' positive experiences with love, relationships, or affection. Videos that included autistic adults often depicted positive experiences with romantic relationships or acceptance by nonautistic peers. One video depicted how an autistic adult developed a relationship with a nonautistic adult who did not see autism as an obstacle to having a relationship. In addition, some videos were of autistic adults and their family members caring for each other. For example, a family member posted a video of an autistic adult consoling a family member who was upset.
In other videos, caregivers showed affection for their autistic family members by giving them a hug or other form of physical affection. Caregivers also posted videos of autistic children interacting with others in the community. For example, in one video a police officer turned on the lights of his police car for an autistic child who wanted to see them. In another video, a caregiver described a positive encounter that her autistic son had with another child on the playground.
Daily life
Some videos did not fit into the aforementioned categories but depicted an aspect of an autistic person's daily life. These videos were almost exclusively posted by caregivers or autistic adults' family members, but some autistic adults did post about their daily lives. For example, one autistic adult recorded a video tour of the apartment that she would soon be living in. Caregivers often posted videos of conversations with the autistic adult for whom they provide support. In one video, a caregiver and autistic adult discussed who in the family would be going on an upcoming trip. In another video, a caregiver recorded a conversation with an autistic adult about finishing up work for the day and plans for leisure time later in the evening. Few videos included autistic children, but those that did were typically recordings of daily tasks such as picking up an autistic child from school, spending the day with an autistic child, or packing an autistic child's lunch.
Other/miscellaneous
In some videos, the link between video content and autism was unclear or nonexistent, so the video could not be categorized into any other content topic. Examples of videos with this topic are a video of an individual's dog barking, a recording of a man playing video games, and an infomercial about a company selling safe cutting tools/knives.
Description of categories
Most videos were experiential (61.4%), followed by observational (31.4%), and educational (7.2%). Observational and educational videos had a median of 2.1 million views, whereas educational videos had a median of 1.6 million views. However, educational videos had the highest median number of shares (6120). Additional video characteristics by category are provided in Table 2. Information about how videos were categorized within content topics is provided in Table 3. Across all content topics and subtopics, most videos were either observational or experiential. Stigma, misconceptions, and discrimination had the highest percentage of educational videos (21.8%), which is unsurprising given that these videos often featured autistic people challenging misconceptions about autism.
Table 3.
Content Topics by Category
| Content topic | Videos n | Observational n (%) | Experiential n (%) | Educational n (%) |
|---|---|---|---|---|
| Features of autism | 269 | 73 (27.1) | 177 (65.8) | 19 (7.06) |
| RRBs | 113 | 33 (29.2) | 71 (62.8) | 9 (8.0) |
| Social, communication | 55 | 6 (10.9) | 46 (83.6) | 3 (5.5) |
| Associated core experiences | 58 | 4 (6.9) | 48 (82.8) | 6 (10.3) |
| Gifts/talents | 43 | 30 (69.8) | 12 (27.9) | 1 (2.3) |
| Marginalization | 172 | 43 (25) | 109 (63.4) | 20 (11.6) |
| Inspiration porn | 78 | 36 (46.2) | 41 (52.6) | 1 (1.3) |
| Lack of access | 7 | 1 (14.3) | 6 (85.7) | 0 (0) |
| Stigma, misconceptions, and discrimination | 87 | 6 (6.9) | 62 (71.3) | 19 (21.8) |
| Support | 92 | 15 (16.3) | 69 (75) | 8 (8.7) |
| Accommodations | 73 | 11 (15.1) | 56 (76.7) | 6 (8.2) |
| Caregiving | 13 | 4 (30.8) | 7 (53.9) | 2 (15.4) |
| Services, interventions, and treatments | 6 | 0 (0) | 6 (100) | 0 (0) |
| Positive social interactions | 35 | 20 (57.1) | 15 (42.9) | 0 (0) |
| Daily life | 46 | 34 (73.9) | 12 (26.1) | 0 (0) |
| Other/miscellaneous | 64 | 28 (43.8) | 34 (53.1) | 2 (3.1) |
Characteristics of people in videos
More than half of TikTok videos included an autistic adult (65.5%) and nearly a quarter included an autistic child (22.6%; Table 4). Among videos featuring an autistic person (n = 594), the autistic person was perceived to be White in 87.0% of the videos, and there were relatively similar numbers of feminine presenting (52.9%) and masculine presenting (44.8%) people. Nearly half of videos were posted by an autistic adult (46.6%).
Table 4.
Characteristics of People in TikTok Videos or Posting TikTok Videos with #Autism
| Characteristic | Videos n (%) |
|---|---|
| Person shown in videoa | |
| Autistic adult | 444 (65.49) |
| Autistic child | 153 (22.57) |
| Parent of autistic adult | 52 (7.67) |
| Parent of autistic child | 108 (15.93) |
| Sibling of autistic adult | 37 (5.46) |
| Sibling of autistic child | 22 (3.24) |
| Race presentation of autistic personb | |
| Ambiguous | 25 (4.21) |
| Indigenous/Alaska Native presenting | 1 (0.17) |
| Asian presenting | 4 (0.67) |
| Black presenting | 46 (7.74) |
| Native Hawaiian/Pacific Islander presenting | 1 (0.17) |
| White presenting | 517 (87.04) |
| Ethnicity presentation of autistic personb | |
| Hispanic/Latinx presenting | 31 (5.22) |
| Non-Hispanic/Latinx presenting | 554 (93.27) |
| Unknown | 9 (1.52) |
| Gender presentation of autistic personb | |
| Feminine presenting | 314 (52.86) |
| Masculine presenting | 266 (44.78) |
| Nonbinary presenting | 8 (1.35) |
| Unknown | 6 (1.01) |
| Person posting video | |
| Autistic adult | 316 (46.61) |
| Autistic child | 4 (0.59) |
| Clinician | 1 (0.15) |
| Friend of autistic adult | 2 (0.29) |
| Friend of autistic child | 1 (0.15) |
| Parent of autistic adult | 109 (16.08) |
| Parent of autistic child | 139 (20.50) |
| Partner of autistic adult | 1 (0.15) |
| Sibling of autistic adult | 24 (3.54) |
| Sibling of autistic child | 16 (2.36) |
| Third party/other | 45 (6.64) |
| Unknown | 20 (2.95) |
Categories are not mutually exclusive.
Among videos featuring an autistic person (n = 594).
Discussion
People use social media to connect to others, learn about the world around them, and better understand themselves. Many social media users access health information and participate in health-related online communities.2–4 Social media may be particularly appealing to autistic people as a way to find others with similar interests or lived experiences and build social connections and community. In this study, we aimed to understand the kind of information that people find in highly viewed TikTok in videos with #autism so that researchers, clinicians, and advocates can better understand how this platform is being used, and the extent to which it supports equitable understandings of autism and acceptance of autistic people.
We analyzed videos posted to TikTok with #autism that were viewed >1million times. All videos had considerable reach, ranging in total number of views from 1,000,000 to 50,100,000 and likes from 180,700 to 7,700,000. For some health conditions (e.g., ADHD, COVID-19, and cancer) there is a concern of the spread of misinformation through social media platforms.39 However, our findings indicate that highly viewed TikTok content with #autism primarily consists of autistic people and/or their loved ones sharing information and making social connections around their daily lives and experiences. For example, many autistic people posted videos about the accommodations they require in home, work, and school settings, or about experiences common to many autistic people such as challenges perceiving body states.
This content is supportive of equity for autistic people, in that autistic individuals' needs and experiences are shared and explained, which is a necessary precursor to increased societal acceptance of neurodiversity, better accommodations for autistic people, and more equitable community participation. Sharing this content may also suggest that TikTok serves a different purpose for autistic people, in that it is not primarily used to share diagnostic or “treatment”-related information. For instance, a recent study found that 73% of TikTok videos with #ADHD were intended to educate people on ADHD characteristics, diagnostic information, and other information,10 whereas we found only 7.2% of our sample of highly viewed videos with #autism were intended to be educational in nature.
An autistic person was featured in 65.49% of the videos in our study. Among videos featuring an autistic person, the autistic person was most often perceived to be White (87.0%) and rarely were perceived to be nonbinary (1.35%). Our findings regarding who is often portrayed in these videos have implications for the extent to which users can find others who they feel they relate to on TikTok. As most TikTok videos in our study were either experiential or observational, it is likely that people use #autism to build community, although some users may have difficulty finding representations of their identities on TikTok.
This may be a result of bias in TikTok's proprietary algorithm, which may limit the visibility and reach of creators of color40 or different gender identities, or may reflect the reality of people who are creating highly viewed #autism content. However, the result of highly viewed #autism videos primarily featuring White presenting people is that autistic Black, Indigenous, and people of color may have difficulty finding others with similar backgrounds and experiences, limiting the full benefit they could receive from communities that represent them along both disability and racial dimensions.41 Similarly, individuals who are nonbinary, who are three to six times as likely to be autistic,42 may have difficulty finding representative communities as well.
Highly viewed TikTok videos with #autism that depict daily life and lived experiences of autistic people are consistent with the growing movement in autism research toward neurodiversity-affirming practice, reducing stigma, and increasing the acceptance of autistic people and autistic ways of being. For example, caregivers often recorded videos of autistic individuals' daily lives. We suggest that the recording of “daily life” activities is helpful for achieving these goals. Although autistic people may have unique experiences from nonautistic people, these videos challenge the misconception that autistic people's lives are markedly different or somehow worse than nonautistic peoples' lives.
Other videos, however, may detract from efforts to increase the acceptance of autistic people and autistic ways of being.38 For example, videos in the “inspiration porn” content subtopic tended to portray autistic people as “props” or center the actions and feelings of neurotypical people (e.g., classmates and parents), whereas overlooking those of the autistic person. We acknowledge that many of these videos were likely posted with good intentions by autistic peoples' loved ones to share their autistic family member's life experiences. However, “viewing persons with disabilities as somehow “special” or as objects of “inspiration” is missing the most important aspect of their being…humanness.”43
In addition, it is important to consider consent and assent, especially when the content being shared may depict a particularly vulnerable moment. For example, the “associated core experiences” content topic included multiple instances of caregivers recording videos of their autistic child mid-meltdown, which were then posted and viewed by millions of people. We recognize that the decision of whether to post content of this sensitive nature is complex; meltdowns are commonly experienced by many autistic people and these videos accurately capture those lived experiences. Some autistic people may choose to record themselves during a meltdown for the purpose of sharing their experience with others.
However, when the person being recorded does not (or cannot) provide consent or assent, this may compromise the autistic person's right to privacy and autonomy. Adolescents in the general population largely disapprove of parents' online sharing of information, videos, or pictures of their minor children.44 However, less is known about how autistic people feel about the content being shared about them by caregivers, or about the potential unintended consequences of sharing videos without consent or assent, particularly of vulnerable moments.
Limitations
The TikTok proprietary algorithm influences which videos are viewed the most and thus influences the data obtained through the TikTok scraper. Videos with >1 million views may have different content than those that are less viewed, so our analysis is not necessarily representative of all #autism content on TikTok. Our decision to include only #autism was primarily due to logistical considerations with the TikTok scraper (i.e., only one hashtag is searched at a time) and resources available for this project. We feel that our study focusing on highly viewed #autism videos is a valuable starting point for understanding how TikTok is being used to discuss autism.
However, we do acknowledge there are other hashtags relevant to this dialogue (e.g., #autisticgirls, #Autizzy, #autistic, #actuallyautistic, #asd, #autismawareness, and #autismacceptance) that may yield different results/content topics and would be valuable to analyze in future studies. We did not log into a TikTok account and instead scraped TikTok for all relevant videos in an account agnostic way. As a result, the videos that we identified may be different from the videos that are shown to an individual user based on the proprietary algorithm and how it is applied to the content that each user is shown when scrolling their “For You Page.” We also did not have a way to verify age, gender, race, or ethnicity.
As a result, we could only identify perceived age, gender, race, and ethnicity, which may or may not match how the person in the video would self-identify and could bias our characterization of people featured in highly viewed #autism TikTok videos. However, we still felt this was a valuable addition to the study in that we were able to characterize perceptions that TikTok users may make when trying to find users with similar identities to themselves. Our findings are based on only one social media platform and may not generalize to other platforms. Finally, relatively few videos (7.2%) included in this study were classified as educational in nature. As a result, we were unable to assess the relative accuracy of educational information being shared using #autism on TikTok.
Conclusion
We analyzed highly viewed TikTok videos with #autism. The purpose of most included videos appears to be building connection and community through sharing lived experiences, rather than providing “facts” about autism. Future research is needed to identify how and why autistic people use TikTok, what nonautistic people take away from the videos that they view about autism, and how social media can be used to promote acceptance of autistic people. Researchers, clinicians, and advocates should be aware of the TikTok content using #autism, which is viewed by millions of people, to better understand how TikTok is actively shaping the social discourse around autism.
Acknowledgments
We thank Elizabeth Hyer for her assistance with using the TikTok scraper to extract the data and J. Madison Hyer for consulting on the quantitative data analysis. We also thank Eva George, Diversity, Equity, and Inclusion specialist at The Ohio State University, who provided guidance on considerations for and implications of capturing perceived race, ethnicity, and gender.
Authorship Confirmation Statement
Conceptualization, methodology, formal analysis, writing original draft, review, and editing by D.G. Conceptualization, methodology, formal analysis, review, and editing by D.R. Methodology, formal analysis, review, and editing by M.K.H. Conceptualization, methodology, review, and editing by M.S. Conceptualization, methodology, writing original draft, review, and editing by L.B. Conceptualization, methodology, data curation, formal analysis, writing original draft, review, and editing by B.H.
Author Disclosure Statement
No competing financial interests exist.
Funding Information
This study was supported in part by a core grant to the Waisman Center at the University of Wisconsin-Madison (P50HD105353).
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