‘Wait,am I #neurodivergent?’ Exploring TikTok's influence on neurodivergent self-understanding

Abstract

TikTok is being utilised by its many users for learning, understanding and discovering a plethora of information and experiences. One of the more notable instances of this has been the uptick in neurodivergence content popularity – with attention deficit hyperactivity disorder content being one of the most popular topics on the platform. Using semi-structured interviews and focus groups with self-identified and formally diagnosed neurodivergent New Zealand-based TikTok users, this research provides some insight into the community making and identity affirming practices that take place on TikTok in lieu of community in the offline world. The participants don’t use TikTok for self-diagnosis or identification, but use it for affirming their identity, finding a sense of community and learning about the experiences of other neurodivergent people – although they are nervous about neurodivergence misinformation on the platform. This misinformation can be detrimental to neurodivergent identity and acceptance, though this research urges there should be more consideration about whether lived experience sharing can be called or is misinformation. Neurodivergence content on TikTok breaks down some of the barriers to information about neurodivergence, which have typically only been accessible through medical professionals or resources. It lets neurodivergent people see diverse representations of neurodivergent lived experiences and provides them with positive, helpful representations that enable them to self-actualise and understand their identities. Instead of neurodivergent content being framed as health information, it should instead be understood as identity work and community formation. It's imperative to consider how we can foster community and identity affirming spaces for marginalised groups offline before regulating the spaces they make for themselves online.

Introduction

TikTok is being used by marginalised groups as a space for representing their identities and voices that have traditionally not been accommodated in society and traditional media. The disability movement, especially, has been gaining traction online for reworking the social understandings of disabilities and disabled people – notably, the reworking of social understandings of neurodivergence on TikTok. In New Zealand, understanding of neurodivergence is limited and not widely spoken about in offline spaces, unless by those who are neurodivergent. Additionally, psychological support services are underresourced, underfunded and under pressure to keep up with the needs of those seeking support services. This research seeks to explore what influence neurodivergence TikTok content may have on neurodivergent self-understanding, and how people use TikTok to learn about, understand or discover neurodivergence. There are concerns online and in the literature about the harm misinformation on TikTok can cause, but this research argues that neurodivergent content on TikTok serves as identity work and community formation rather than health information. Neurodivergence content should be understood as personal knowledge, which may help in removing labels like misinformation from the lived experiences of neurodivergent people.

TikTok

Formerly Musical.ly, ByteDance-owned TikTok is the leading ‘short-form mobile video’ (TikTok, n.d.a) platform, with over 1 billion active monthly users globally, and over 5 billion downloads since its global release in 2016 (Singh, 2025). TikTok's ‘For You’ feed – colloquially termed the ‘For You page’ – is governed mostly by its content recommendation algorithm. A TikTok user's For You page is a diverse amalgamation of what the algorithm ‘thinks’ the user might like, which is minorly informed by who the user follows, but is more largely informed by what and how a user interacts with the content on their main feed. TikTok positions itself as a neutral platform where users autonomously curate their feeds based on their habits and preferences, but in reality, TikTok creates these interactions through its infrastructure (Su and Tang, 2023). TikTok's is less for interpersonal connection and communication, and more for imitation and mimesis (Zulli and Zulli, 2022). Prolific content creation is encouraged through the platform's infrastructure, where TikTok suggests users create videos in multiple ways – either by repeating a trend, using the same music as someone else, or by responding to another creator's video. Content creation on TikTok has little to no barriers, leading to an endless stream of content about all kinds of topics with little prioritisation on enforcing information accuracy (Leveille, 2024).

TikTok's ‘About’ section uses vague terms to detail its techniques for recommending content (TikTok, n.d.b), and this lack of transparency leads to users assigning their own beliefs or theories about how the algorithm works (Bucher, 2017; De Vito et al., 2017; Karizat et al., 2021). Though users may not understand how the algorithm works, they are aware that it shapes their experiences and interactions with the platform (Siles et al., 2022). TikTok is known for its ability to recommend content to users. Some users enjoy not having to explicitly describe their identities to receive content they like, and others find it uncomfortable that TikTok can reference personal elements of their identity – all the while users are limited in their domestication of the platform when they receive content that is in opposition to their identities and interests (Simpson and Semaan, 2021; Simpson et al., 2022).

The TikTok algorithm can influence users’ self-concepts through the content they receive; however, this is limited as the algorithm privileges content made by young, attractive white people and forces marginalised groups to do the labour of making their own representation space on the platform (Lee et al., 2022; Rauchberg, 2022). This algorithmic privileging results in algorithmically imagined audiences or communities, which provide a sense of connection amongst TikTok users, and between users and creators (Jones, 2023; Maddox and Gill, 2023).

Neurodivergence

‘Neurodiversity’ is the ‘diversity of human minds, the infinite variation in neurocognitive functioning with our species’ (Walker, 2021). Neurodiversity is not a trait but a description of humans’ diverse neurological functioning. ‘Neurodivergent’ describes a mind that functions in ways that are different from the societal ‘norms’ (Walker, 2021). Neurodivergent is not typically a synonym for autism or ADHD – this term acts as an umbrella – though as neurodiversity understanding evolves, some neurodivergent communities may choose to use neurodiverse/neurodivergent as synonyms or identifiers rather than their specific type of neurodivergence. ‘Neurotypical’ describes a mind that works in ways our society accepts and expects of neurocognitive functioning (Walker, 2021).

The neurodiversity concept should not be attributed to one theorist or scholar, and should instead be understood as collectively conceptualised – originating from online autistic communities in the 1990s (Botha et al., 2024). The authors argue that to attribute the concept to one theorist perpetuates the erasure and exclusion of neurodivergent people from their own history. Neurodivergent people were historically seen to have less intelligence than neurotypical people; therefore, they were excluded from the research about their experiences and lives. Epistemologically, neurodivergent people have a deeper understanding of the neurodivergent experience than non-neurodivergent people and can provide rich knowledge for neurodivergence research (Kroll et al., 2024).

Kroll et al. (2024) suggest that there is not one singular definition for neurodivergence, that it is both an identity and a collection of neurodevelopmental conditions.

Two of the common ways of understanding the neurodivergence concept are the medical model's context and the social model's context. Medically, neurodivergence is looked at in regards to the Diagnostic and Statistical Manual of Mental Disorders (DSM-5) definition of neurodevelopmental conditions, described as

disorders [that] typically manifest early in development, […] and are characterised by developmental deficits that produce impairments of the personal, social, academic, or occupational functioning. (American Psychological Association, 2013)

Some of the disorders included in the DSM-5's definition are autism spectrum disorder (ASD, herein referred to as autism and/or autistic), attention deficit hyperactivity disorder (ADHD), learning and motor disorders, and tic disorders, among other conditions. The medical model has been criticised for further stigmatising neurodivergent brain processing through its pathologising of neurodivergence and its ignorance of the historic oppression of neurodivergent individuals (Jones et al., 2024; Kroll et al., 2024). The neurodiversity paradigm follows the disability movement's footsteps; rejecting the medical model of neurodivergence and arguing that neurodivergent struggles are not due to being neurodivergent, but because of the rigid societal norms that suggest neurodivergence is negative (Jones et al., 2024; Kroll et al., 2024). The social model of disability and neurodivergence, in comparison, provides a more inclusive approach to the neurodivergence concept. It encapsulates all brain functioning that is different or atypical of the societal norms, which commonly includes non-neurodevelopmental conditions like obsessive-compulsive disorder and anxiety (Kroll et al., 2024). This research uses the social model of disability's context for understanding neurodivergence. Additionally, while the debate on whether to use people- or identity-first language persists, this article will use identity-first language as evidence suggests this is commonly preferred by disabled communities because it supports individual agency, autonomy and identity (Best et al., 2022; Chapman and Bovell, 2022; Grech et al., 2023). This article only uses medical language when distinguishing between how the models refer to neurodivergence or when there is no other appropriate descriptor, similarly noted by Kroll et al. (2024).

Self-identification

The neurodiversity movement is working to diminish the stigma surrounding neurodivergence and improve awareness and acceptance through the sharing of lived experiences and knowledge. This takes place on TikTok, where access to neurodivergent knowledge has less barriers than traditional forms of knowledge. This leads to some people using TikTok as the beginning of understanding themselves and identifying as neurodivergent. Self-identification, or self-diagnosis, has previously caused concern amongst medical professionals for leading to misinformation, misdiagnosis and mistrust of medical professionals (Lewis, 2016). In a study looking at information accuracy in ADHD TikTok videos, Yeung et al. (2022) found that approximately half of their sample contained misinformation, with the majority of the videos containing misinformation being created by non-health practitioners. Additionally, users who view mental health lived experience content can tend to pathologise their own normal behaviour after viewing (Corzine and Roy, 2024; Hasan et al., 2023). Some people prefer content made by people like them over content from experts (Mou and Shen, 2017), which can explain why user-generated health content can be more popular.

The concerns about misinformation and misdiagnosis are warranted, but more consideration should be given to why some people turn to self-identification after receiving social media content. There are many barriers to seeking a formal diagnosis for neurodivergence, such as cost, access to professionals or the fear of not being believed, leading to many neurodivergent people relying on self-diagnosis to understand and live with their behaviours (Lewis, 2016, 2017). Many neurodivergent people remain undiagnosed into adulthood because of biases in diagnostic processes (McDonald, 2020). Additionally, autistic representation in popular media stigmatises autism by focusing on the ‘negative’ aspects of being autistic and reinforces harmful stereotypes about gender, ability and autonomy (Boisvert et al., 2024; Jones et al., 2023; Mittmann et al., 2024). Social media content about neurodivergence, on the other hand, is autonomous, provides access to a community and knowledge that some neurodivergent people haven’t before been able to reach, and allows neurodivergent people to build connections online with less personal risk, as well as informing otherwise unaware people of the lived experiences of neurodivergent people (Alper et al., 2023; Jones, 2023; Leveille, 2024; Maddox and Gill, 2023). Additionally, TikTok allows neurodivergent creators to share lesser known aspects of their neurodivergence through comedy and storytelling, while advocating for and empowering the neurodivergent community (McDermott, 2022). These spaces could be viewed as unbounded online health communities, where supportive information and sharing of lived experiences is accessible to those who need it (Eagle and Ringland, 2023; Milton et al., 2023).

While the rise in social media content about neurodivergence and mental health could lead to people misdiagnosing themselves or perpetuating stigma, this alone is not a cause to suggest that those who seek diagnosis after Internet research are any less justified in their personal understanding than those who approach diagnosis through more ‘traditional’ avenues (Rettew, 2024). Some neurodivergent people believe self-diagnosis is as valid as a professional diagnosis, and believe it can offer more benefits, and some use it as the first step in receiving a professional diagnosis (Alper et al., 2023).

TikTok content can contain harmful misinformation, and social media users should be wary when receiving user-generated health content. However, not acknowledging the benefits of lived experience sharing on social media reinforces the systems of oppression and hierarchy that have historically limited people from accessing health knowledge. This research argues that neurodivergent content on TikTok should be understood as identity work and community building rather than health information (Albury and Hendry, 2023; Leveille, 2024). Doing so could aid in changing the narratives surrounding health and identity community seeking on social media and help to dismantle the oppression of neurodivergent lived experience and knowledge sharing, subsequently breaking down some of the barriers neurodivergent people have to overcome to understand themselves and be accepted by others.

Methodology

It was important for this research project to prioritise the voices and opinions of neurodivergent people, self-identified or formally diagnosed, and for this research to be inclusive and empathetic of their lived experiences. Neurodivergent people have historically been ignored, misrepresented and altogether excluded from the research about their experiences (Hume, 2024; Kaplan-Kahn and Caplan, 2023; Kroll et al., 2024). To combat this, the methods used in this research were semi-structured interviews and focus groups. Interviews were offered to be inclusive and accessible for any participants who didn’t want to take part in a group setting or were unable to participate in a focus group for other reasons. There were three interviews and one focus group comprised of four participants. The participants were a mix of self-identified and formally diagnosed neurodivergent people, with several participants being multiply neurodivergent as well (identifying with/as multiple kinds of neurodivergence) (Hume, 2024). The participants for this research self-selected to participate by answering a call-out on posters around a university campus and on social media, from which seven agreed to participate. The participants were between the ages of 24 and 28, were all higher educated or currently in various stages of higher education, and were mostly women or woman-identifying, apart from two non-cisgender people. There was one participant of colour.

The focus group and two of the interviews were conducted in various places on a university campus that the participants and the researcher all attended. One interview was conducted over video call out of convenience for the participant and researcher. Before interviewing, the participant/s and researcher spent some time informally conversing in order to get to know each other, which helped in creating an open and comfortable interview environment (Acocella, 2012). The interviews and focus group used the same set of questions, with follow-up questions being asked to delve further into the participants’ opinions and experiences.

The interviews and focus groups were designed to be inclusive of neurodivergence in various ways. Hume (2024) discusses ‘access intimacy’; the idea that understanding each other's access needs can connect two people on a relationship basis, rather than only logistical. The participants were welcomed to use whatever support aids they would like, with one participant in the focus group bringing out a selection of fidget toys and offering them to the rest of the group. Another occasion of connection happened when the group bonded over feeling distracted by noises happening outside of the discussion room. These moments connected the researcher and participants as neurodivergent people with varying access needs, rather than the hierarchical researcher and researched.

However, there are limitations to this research method. It is not entirely accessible to higher-support-need neurodivergent people who experience barriers with social interaction or with advocating for themselves. Future research should consider a recruiting and research process that accommodates higher-support-need neurodivergent people to ensure their voices are also heard in this space. Unfortunately, this was outside of the scope of this research. Additionally, the participants in this research are all higher educated and are heavily involved either personally or professionally in neurodivergence support services and psychology, which may limit how well this research reflects the understandings of people whose only interaction with neurodivergence has been on TikTok and/or outside of educational institutions.

The interviews were audio-recorded on the researcher's smartphone's voice recording app, then uploaded to Microsoft Word for transcribing. The transcripts were then edited to be as accurate as possible. Braun and Clarke's (2022) guide to reflexive thematic analysis suggests spending time reflecting on the research process and getting to know the data before starting the analysis. Reflections were made after each interview, and during the coding process. The time spent editing the transcripts also provided a thorough overview of what the participants had expressed. Although the sample was small, saturation was reached in the data analysis phase after several rounds of thematic analysis when no new codes or themes emerged. Future research should include a larger sample to make further contributions to this topic. The coding process was rigorously, reflexively and repetitively (Braun and Clarke, 2022) done by hand, resulting in 30 codes, from which six themes emerged: navigating the TikTok infrastructure; neurodivergent routines of TikTok; neurodivergence content is affirming; neurodivergence content is a double edged sword; others aren’t doing the journey like me; and lastly, concerned about the consequences of neurodivergence content. This article will discuss five of the six themes that emerged.

Discussion

This section will discuss five themes that emerged from the data analysis, primarily focusing on how these participants feel about TikTok, about neurodivergence content on TikTok and what kind of influence the content has on their self-understanding. Their feelings range from liking the content because it affirms their identity and brings them a sense of community, as well as learning about others’ experiences. However, these participants are worried about misinformation and what this content might do for the neurodivergent community. This section highlights the need for better framing of neurodivergence content as identity work and not health information (Leveille, 2024), as well as considering whether and how lived experiences and personal knowledge should be labelled as misinformation.

Navigating the TikTok infrastructure

Each person varied in their use, perspectives and beliefs of their interactions with the TikTok infrastructure. For example, liking a TikTok video was just a passive, no-brainer interaction with content for some of these participants, whereas for others, it was a way to categorise for themselves what content they enjoyed. Many of the participants spoke to a hesitancy to comment on videos, either because they felt it was too much effort or because of a fear of being ‘seen’ by others online. They felt okay about the TikTok algorithm ‘knowing’ them, reflecting their interests and identity back at them through content, and they enjoy being a part of these imagined communities (Jones, 2023; Lee et al., 2022; Maddox and Gill, 2023), but have a strong aversion to actually connecting with other users in comment sections.

TikTok uses some explicit content recommendation features, like asking users if they liked a video after watching it and if they want more content like it (TikTok, n.d-b). The participants had different perceptions of how these features work, demonstrating algorithmic folk theories (De Vito et al., 2017; Karizat et al., 2021). The ‘not interested’ feature is a way for users to explicitly tell the TikTok recommender system what content they’re enjoying or not, and many of these participants said they used it to varying degrees. Some used the feature liberally to tell the algorithm they didn’t enjoy the content, however, participant 2 feared that if she used the ‘not interested’ feature too frequently, the TikTok algorithm might forget the previous content she had already classified, so she saved using it for ‘extreme cases’ and would otherwise block creators she found annoying. TikTok offers some other content customisation features, but there is little information on how this impacts a user's FYP. Participant 5 filled in the gaps with her own ideas of how it might work, saying that she doesn’t answer the content recommendation questions that appear after videos because she worried that answering would make the algorithm think she only wants that content; she would rather the algorithm give her content without explicit input from her. These participants demonstrate the varying ways TikTok users will create theories or beliefs to feel more secure in using platforms with algorithms they don’t understand (De Vito et al., 2017; Karizat et al., 2021).

These participants described that they enjoy the content they received the majority of the time, but their feelings were more complex when it came to the algorithm that gives them this content. On the one hand, participant 6 said ‘I just trust the algorithm’ when asked about whether he uses the search function to find content that isn’t on his For You page. He also said he gets dissuaded and gives TikTok ‘timeout’ and won’t use the platform when he receives content he's not interested in – limiting how the platform can be domesticated into his routines (Simpson and Semaan, 2021; Simpson et al., 2022). Participants 1 and 6 described how they wait out the bad content and trust in the ‘almighty power’ of the algorithm to get them back to where they want to be. Participant 2 will engage differently with the platform to get back to the content she wants. When participant 1 was first using TikTok, she said she found the algorithm frightening because she knew it would recommend her content that aligned with her interests, but she didn’t understand how it did so. In these comments, it is evident how the lack of transparency about how the algorithm works causes discomfort in its users, and exhibits why users create their own theories and beliefs when using TikTok.

Neurodivergence content is affirming

Neurodivergence is often depicted in media with harmful stereotypes that further detriment neurodivergence awareness and acceptance, as well as the identity of neurodivergent people. TikTok, however, allows for neurodivergent people to portray their experiences and determine their own identities on their terms. Participant 1 described that she viewed the neurodivergent content she was receiving on her For You page as a learning opportunity. Because representations of neurodivergence or accurate representations, are scarce, participant 1 found the content on TikTok to be helpful in understanding the varying experiences of being autistic and ADHD:

P1: I didn't particularly identify with [autism content] very strongly, but I wanted to be able to empathize with other people with autism better.

For this participant, neurodivergent content on TikTok became her insight into how others experience the world, before it helped her understand elements of herself. Representation of lived experiences in TikTok content can be beneficial for introducing people to the experiences of marginalised, underrepresented groups that are often excluded from mainstream media and fosters connection (Jones, 2023; Maddox and Gill, 2023). TikTok also offered participant 2 different perspectives of neurodivergent lived experiences. After being diagnosed with ADHD, she sought out ADHD content to learn more about what her diagnosis meant for herself and others, further exemplifying how beneficial neurodivergent TikTok content is for neurodivergent people's learning and understanding of themselves (Jones, 2023; Lee et al., 2022; Maddox and Gill, 2023).

Participant 7's journey to diagnosis didn’t begin with TikTok, but she described neurodivergence TikTok content as helping her understand what ADHD was while she sought a formal diagnosis. After seeing ADHD content, she described a ‘lightbulb moment’, when she realised how an ADHD diagnosis was accurate to her lived experiences. Participant 7 also said how she found watching ADHD content on TikTok to be a comfort to her as she felt alone at the beginning of her diagnosis journey. Additionally, participant 6 said this about the TikTok content:

P6: You can see, like, people finally talking about masking and that kind of thing, and like, the female experience of it. Yeah, that's something you can't get from looking at the DSM.

Neurodivergence TikTok content breaks down some of the barriers to stories and experiences of neurodivergence that aren’t evident in the more formal neurodivergence resources (Jones, 2023; Leveille, 2024; Maddox and Gill, 2023). Participant 1 believed that hearing women talk about their experiences with their ADHD would be best achieved through TikTok, as it's difficult to find information about women's experiences with ADHD in medical resources. Watching ADHD content made by women helped participant 1 understand herself and the female experience of ADHD better. This showcases the need for unbounded online health communities, where supportive information and sharing of lived experiences are accessible to those who need it (Eagle and Ringland, 2023; Milton et al., 2023). Furthermore, participant 3 highlighted how important it is for young people to see accurate representations of neurodivergent lived experiences. She discussed how difficult it was for her growing up and not understanding how she operated in the world:

P3: I was taking textbooks out of the library to be like, what's wrong with me? Figure this out, you know, and now I'm seeing it in a 40 second video on TikTok with subtitles and all of the things that I love. Of course it's more digestible for me to understand it.

In this digital age, social media may provide young people with a positive representation of neurodivergence that could help them with understanding themselves and others better (Webber et al., 2024). It is crucial for knowledge of neurodivergence to be accessible to young people.

Neurodivergent content and misinformation

TikTok has been beneficial for building communities and sharing perspectives not visible in traditional media; however, social media platforms allow for misinformation to spread easily and quickly, with neurodivergence content commonly containing misinformation (Wu et al., 2019; Yeung et al., 2022). TikTok has limited barriers to making content; their Community Guidelines say they have fact-checking and moderation protocols to help avoid the spread of misinformation ‘that may cause moderate harm’ (TikTok, 2024), but the speed at which people can make and share content arguably limits their ability to challenge all health misinformation.

As a psychology professional, participant 6 talked about how frustrating it is to see neurodivergence misinformation on TikTok. He said he's become wary of those who say they are neurodivergent because the TikTok content isn’t trustworthy, and that:

P6: There are pros and cons [to neurodivergent TikTok content], definitely. A lot of people are becoming a lot more aware and educated on it and a lot of people are becoming a lot more misinformed on it.

Participant 2, a clinical psychology PhD student, also found the misinformation on TikTok to be frustrating, saying she doesn’t think people share misinformation on purpose, but that some creators will exaggerate things or make claims about neurodivergence that aren’t factual. The limited ability of TikTok's credibility checks can lead to extreme viewpoints in an effort to attract more views and likes (Milton et al., 2023). While that may be the case, a reframing of neurodivergence ‘misinformation’ to neurodivergence ‘knowledge’ provides neurodivergent people the autonomy to determine how their experiences are described. Labelling all personal experiences and knowledge as misinformation could be detrimental for neurodivergent people's self-understanding, but simultaneously, unchecked misinformation can be of equal harm.

Participants 5 and 7 both discussed how neurodivergent TikTok content can help people understand neurodivergence, but it depends on what content they’re receiving. Participant 5 wondered whether or not users are capable of interpreting the misinformation as such or if they would take it as truth. Many of the participants described that they see some creators sharing their experiences with their neurodivergence as if it is indicative of others being neurodivergent. The participants don’t believe TikTok creators and users are sharing misinformation to harm the neurodivergent community, but they worry about what this potentially incorrect content could do. Participant 2 described a case of a creator saying their poor spatial awareness was an attribute of their ADHD, which she said is not necessarily untrue, as many ADHD people can struggle with spatial awareness, but it's not a specific diagnostic trait of ADHD. This kind of content can be helpful in sharing things about neurodivergence that people may not know about, but the issue lies with creators describing elements of their neurodivergence and audiences understanding them as fact, or as if it could be applicable to other and all neurodivergent people. The participants worried that this could trivialise the real and difficult experiences of neurodivergent people.

Participant 2 also noted that there is a level of distrust of medical professionals in the neurodivergent content mirroring Lewis's (2016) concerns about mental health misinformation. Neurodivergent people have faced challenges with being believed by medical professionals when seeking diagnosis, and this is especially so for women, gender diverse people, and people of colour, as the standards for neurodivergence have historically been judged against white maleness. Where the distrust of medical professionals becomes an issue, participant 2 suggested, is when neurodivergent content creators start using their lived experiences as a way to legitimise their claims about neurodivergence.

The current viewpoint of health information on social media is too narrow for understanding the digital cultures and practices in the content, and could be reframed as community building and participation, rather than health information (Albury and Hendry, 2023). Arguably, neurodivergence TikTok content is identity work, and not always health information, and understanding it as such may help in removing the label of misinformation from neurodivergent people's lived experiences and knowledge. It may also be beneficial in understanding the neurodivergence knowledge-seeking practices of social media users, neurodivergent or not (Albury and Hendry, 2023).

The journey to self-understanding and diagnosis is different for everyone

For some of the participants, there was tension between those who understand themselves as neurodivergent from TikTok content and those who were diagnosed or self-identified outside of TikTok. Some of the participants made sure to declare they have no qualms with self-diagnosis or identifying, but that they have felt concerned that people only use TikTok as a resource for understanding themselves as neurodivergent. Participant 5 said that people fail to acknowledge that a person can experience traits or elements that are typically attributed to neurodivergence without being neurodivergent; it's when those things cause impairment to daily life that the person could be neurodivergent. Participant 6 supported this by saying: ‘a diagnosis requires there to be […] dysfunction’. Participant 4 then mentioned how people on TikTok say they get distracted with their ‘supposed’ ADHD, and shared a personal experience he’d had with being forgetful and it causing him distress. Seeing people on TikTok comment about getting distracted with what he perceives as less severe distraction was frustrating for him. These participants suggested that neurodivergence content can feel demeaning and doesn’t seem to take the real-world lived experiences of neurodivergent people seriously. This is complex; neurodivergence content and those who comment on their experiences in comment sections shouldn’t demean the experiences of others, but to suggest that other users’ sharing of experiences are not as serious and real as another's is troubling. It implicitly puts the lived experience of one person above another person, which in turn perpetuates the hierarchy of who is allowed to know and speak about neurodivergent experiences.

Claiming an identity and trivialising the experiences of marginalised people is real and hurtful to those with lived experience. However, there are many neurodivergent people who have gone undiagnosed because of biases in the medical system and are using TikTok for understanding themselves and their identities (Leveille, 2024; McDonald, 2020; Rettew, 2024). Those who talk about their neurodivergence in online spaces don’t have less claim to their identity or self-understanding because of how they’ve informed themselves.

Worries about misinformation were prominent in this research. Some of the participants were concerned that those who aren’t in higher education or who are unaware of the misinformation prevalence online wouldn’t be able to discern false content like those in higher education could. Participant 5 suggested that maybe others don’t have the same abilities to reflect on the content they see and their identification with it. Additionally, participant 5 raised a concern about how some traits of neurodivergence can overlap with other disorders or conditions, and she worried that those who focus on being neurodivergent might not realise their traits can be attributed to something else. Similarly, participant 7 mentioned how prior to being diagnosed with ADHD, she had received a scattering of ADHD content that she related to, ‘but’, she said, ‘you can relate to [ADHD content] without being [ADHD]’. Davison's (1983) ‘third person effect’ describes the phenomena of persuasive communications audiences overestimating the effect the communications will have on others, while believing themselves to be less persuaded or not affected by the same messages. This is evident in how these participants spoke of others’ discernment of neurodivergent TikTok content. Participant 5 suggested that we, in higher education, could be able to discern how closely we actually identify with the TikTok content compared with people who don’t have or aren’t in higher education. Here, participant 5 expects that other TikTok users will misunderstand themselves based on neurodivergence content, though not ‘us’. Participant 2 suggested that people who see neurodivergent content on TikTok and identify with it need to do research outside of TikTok before coming to a conclusion that they are neurodivergent. She said that TikTok makes for a good jumping-off point for learning about lived experiences, but for people to be really informed about neurodivergence and whether they identify with it, they should use other resources to learn more. This again has the implicit assumption that ‘we’ have done enough research to identify as neurodivergent, but ‘others’ don’t or haven’t. This also reinforces the hierarchy of neurodivergence knowledge and experience. Many of the people who talk about neurodivergence on TikTok, both creators and users, don’t have access to the medical resources to be diagnosed or to understand what they might be feeling, so they turn to online community spaces to break down barriers to the knowledge. Not only do these examples highlight the hierarchy of neurodivergence knowledge, they also demonstrate how words like ‘misinformation’ get in the way of dismantling the hierarchies surrounding marginalised people's knowledge and experiences.

One of the participants spoke very candidly about her occasional difficult feelings towards neurodivergent content creators. Participant 3 was formally diagnosed with ADD as a child, then received a formal diagnosis of ADHD in her 20s while at university. She spoke openly about how this was difficult for her as a young person and what it was like trying to fit into the neurotypical social norms:

P3: […] sometimes I do have this feeling of, like people don't mask as well as I did as a young person. So I see people on TikTok going, you know, as a neurodiverse person, ‘I won't do this. I won't do this. I'm not OK with this. You can't ask me to do this’, and I have this, like, immediate, visceral reaction of, like, just do it. Just mask. Just get through it. Just survive it. And that's not genuinely how I feel …

She said she reminds herself to practice empathy; that just because she struggled as a young person with trying to fit in, it doesn’t mean other neurodivergent people now need to mask too. The sentiment that others don’t have the same struggles or journey towards discovering their neurodivergence is evident here. As neurodivergence becomes more widely spoken about and accepted, and as the content about it moves towards more open dialogue about what it's like to be neurodivergent, those who struggled as younger people and who had to advocate for themselves before cultural attitudes shifted could feel left behind. While many of these participants enjoy the content and feel some affirmation of their identities from it, it's important that the content makes space for all neurodivergent journeys. These sentiments also highlight how crucial positive representation of neurodivergence, free of negative stereotypes, is for young neurodivergent people.

Concerned about the consequences of neurodivergence content

There were some concerns about what the perceived consequences of neurodivergence TikTok content will be, and what it could do for the neurodiversity movement. Some participants were concerned about it becoming a trend or being trivialised, and some were concerned that the content could contribute to further strain on psychological support resources. The participants were also concerned about traits of neurodivergence being misrepresented in the content, leading to either more stigma or the trivialisation of neurodivergence. Participant 5 likened the popularity of neurodivergence content to the glamourisation of eating disorders on Tumblr in the 2010s. She said the content being ‘trendy’ doesn’t take into account the struggles of being neurodivergent and almost glamourises it. Participant 4 agreed, similarly saying that this content ‘runs the risk of becoming trendy rather than something that is there to help people or showcase a lived experience’.

The most popular neurodivergence content on TikTok is about lived or personal experiences, generally made by non-health practitioners (Yeung et al., 2022). While this breaks down the barriers of the medical model for neurodivergence, it creates a similar issue raised in the conversation about misinformation, where users can talk about any aspect of their neurodivergence and be seen as a legitimate source. This may lead to TikTok users who aren’t neurodivergent making content about neurodivergence in ways that trivialise the real experiences of neurodivergent people. It could also lead to people misunderstanding themselves as neurodivergent, as participant 5 worried. Riedl et al. (2021) suggest that users of social media platforms may be able to conceptualise the ‘imagined affordances of platforms’ easier in relation to their personal experiences more than they can conceptualise ‘the abstract notion of beneficial effects of platforms on society’ (p. 1643). These participants said that the neurodivergence content they receive affirms their identity and helps them feel connected to others who understand them, but they are worried that misinformation and legitimised content from non-health practitioners about their personal experiences will lead to neurodivergence becoming trendy and glamourised. These users perceive the neurodivergence content to have a positive effect on their self, but that it could have a negative impact on society overall (Riedl et al., 2021).

Participant 6, talking about his own experiences with working in a psychology clinic, worried that social media users believing they are neurodivergent based on the TikTok content could lead to mental health resources being misplaced. He said that because the content seems to be trendy on TikTok, more people are seeking diagnoses, which is frustrating for those who are diagnosed and live with it, and frustrating to potentially have their resources strained. Participant 5 agreed, saying it's damaging for those who are diagnosed and those who think they might be neurodivergent because the content is inaccurate. When participant 2, a PhD student in clinical psychology, was talking about the potential resource strain on psychological support services, she said she doesn’t believe self-diagnosis is as big of a ‘social crisis’ as some psychology professionals think, and that those who seek diagnosis from content online aren’t wasting resources if their functioning is impaired from traits attributed to neurodivergence, as:

P2: Medical care is, like, a human right, and we have the right to know what's happening with us.

Rettew (2024) argues something similar – that those who seek diagnosis from online content or research aren’t any less neurodivergent simply because they came to the knowledge through unconventional or non-traditional sources. Concerns about how quickly information is disseminated online and what happens because of the rapid spread of information are fair (Wu et al., 2019). Arguably, neurodivergence content and knowledge spreading rapidly is unnerving but is also exciting; people who haven’t understood why they felt different previously now have some of the language to describe their neurocognitive functioning and impairments.

One of the emergent themes from this research is how TikTok content is affirming neurodivergent identities, but this content isn’t just relatable or applicable to neurodivergent people. The neurodiversity movement aims for society to be aware of what neurodivergence is and that all humans have diverse neurocognitive functioning. In this sense, neurodivergence content on TikTok allows people to understand neurodivergence in others and in their own neurocognitive functioning. To be diagnosed as ADHD or autistic requires rigorous processes before a confirmed diagnosis, at least in Aotearoa New Zealand, highlighted by participant 3:

P3: The diagnostic technique for getting diagnosed with ADHD, you can't spoof that and go, you know, ‘Yes, doctor, I swear I have ADHD’.

TikTok content about neurodivergence may risk simplifying the difficult lived experiences of neurodivergent people, leading to trivialisation of and demeaning their experiences. Nonetheless, it also makes neurodivergence a more accessible, understandable topic that non-neurodivergent people can relate to, which may help people accept and appreciate the neurodiversity within society. If neurodivergence TikTok content can help people understand neurodiversity as an everyday occurrence rather than a faraway, misunderstood scientific concept, what society could gain in positive consequences could be equivalent or greater than the perceived negative consequences.

Conclusion

In this digital age and under the scrutiny of social media regulation, it is important to consider the experiences of the people using social media, how and why they are using it. This is especially so for marginalised groups. This research discovered that these participants predominantly didn’t use TikTok as a tool towards discovering their neurodivergence, and weren’t using it to self-diagnose, but were using it for identity affirmation and to gain a sense of community. Neurodivergence content on TikTok should be understood as identity work and community formation, not health information (Albury and Hendry, 2023; Leveille, 2024). Doing so allows neurodivergent people the autonomy to decide how their experiences and knowledge are spoken about, and begins to break down some of the barriers surrounding neurodivergence knowledge. Good representation of neurodivergence is limited, stereotypical, and detrimental to the self-actualising of neurodivergent people (Boisvert et al., 2024; Jones et al., 2023; Mittmann et al., 2024), therefore, it is crucial neurodivergent people have access to stories that represent their lived experiences in helpful and positive ways (Webber et al., 2024). The medical model and information are inaccessible for those beginning to understand themselves as neurodivergent – TikTok content helps to translate some of those experiences into language people can understand (Jones, 2023; Leveille, 2024; Maddox and Gill, 2023).

Future research should consider the neurodivergent youth identity making practices and how those are influenced by TikTok, as well as exploring what the intersections of neurodivergence and other identities mean for identity making practices on social media. This research included self-identified and formally diagnosed neurodivergent people, but research exploring solely self-identified neurodivergent people and their experiences with neurodivergence content would be beneficial, as well as whether they continue to formal diagnosis or not. Research about neurodivergent people should also consider how to adapt current research methods for inclusivity and accessibility at every turn. This research was limited in its ability to be fully accessible to higher-support-need neurodivergent people, and future research should consider how best to understand their experiences through inclusive methodologies. More research needs to be done on the current representations of neurodivergence outside of social media, how neurodivergent people feel about them, and should to consider the implications of better representation in traditional media like film and television. Lastly, research exploring how neurodivergent people use media to support their everyday functioning could be beneficial for further understanding neurodivergence content on social media.

This research urges scholars, decision makers and social media users alike to consider the positive parts of social media amongst the negative. This research provides some insight into the community making and identity affirming practices that take place on TikTok in lieu of community in the offline world. It's imperative to consider how we can foster community and identity affirming spaces for marginalised groups offline before regulating the spaces they make for themselves online.