Neurodivergence and Social Media
Neurodivergent creators on social medias can provide a safe space and representation.
Source: Unsplash.
The online doctor, sometimes known as TikTok, has diagnosed almost all of us with migraines, gut biome issues, or chronic un-intuitive eating – as well as providing nifty tips and tricks for culling the lot.
But recently, ADHD-tok has taken over, and a combination of neurodivergence and self-diagnosis has become increasingly popular - Is this the result of an emerging community, or a social-media fad that has taken off?
According to postgrad student Caitlyn McMillan, who is writing her masters thesis on neurodivergence, identity, and self-diagnosis on social-media, the emerging phenomenon is a community, which has resonated with many young kiwis.
The exploding visibility of neurodivergent creators is a matter of representation, McMillan said.
“Calling it a fad or trend is a disservice to some of the creators making space for themselves where there normally isn’t.”
Discouraging conversations about neurodivergent content online are polarising, and according to McMillan, can reduce content by neurodiverse creators, who are carving space for themselves online, to the easily beguiled product of a trend.
“TikTok has allowed people to represent themselves more accurately than they sometimes are in other forms of media, and it allows for a more diverse representation of identities, especially for neurodivergence,” McMillan said.
Graph displaying the cumulative prevalence of diagnosed ADHD in people aged 1-24 years, by sex and year, demonstrating a significant increase in diagnostic claims from 2000 – 2018. Source: International Journal of Methods in Psychiatric Research, Volume 31.
Neurodivergence might be prominent on TikTok, but it is conspicuously absent from other media? When you picture representations in TV and film, they are mostly typecast roles filled by white, autistic men with intense special interests, McMillan told Canta.
And while it is still important to value those representations, Sheldon Cooper and Spencer Reid can only take us so far.
“TikTok content represents more diverse forms of neurodivergence which can be beneficial for women, gender diverse people, and people of colour,” McMillan said.
According to an anonymous, second-year politics student, “seeing other neurodiverse people online, and seeing yourself represented online can be very powerful.”
As a society, we’re only now beginning to de-stigmatise or acknowledge neurodivergence, and the numbers of recognised neurodiverse people are bound to increase, as we reduce stigma.
“Neurodivergence content online can often give people the language to understand things they have always felt were ‘wrong’ about themselves,” McMillan explained.
The language of neurodivergence, which has made its way out of doctors’ lounges and testing offices, and found its sticking place in a TikTok algorithm, has given people who have always struggled, the right words of expression.
McMillan told Canta, “I don’t strongly believe there are many cons to people seeking more information or diagnoses because of social media – you either are neurodivergent or you’re not, and people tend to feel very strongly about being neurodivergent before seeking professional diagnoses.”
For many people, self-diagnosis is a tool, a way to learn more about themselves and their habits, and according to McMillan, there are major barriers in Aotearoa for seeking a diagnosis. The diagnostic process is far too expensive for most people to access privately; especially for young people like students, or the waitlist is too long for the public system to handle, presenting another major issue.
According to one anonymous postgrad student, “cost is probably the most significant barrier.”
He explained that although cost varies depending on the region you're in, autism or ADHD diagnoses can cost a few thousand. Furthermore, even after accessing a diagnosis – a lengthy, costly process as it is – medical and psychological support is also incredibly difficult to access.
Often, young people find that they aren’t believed by medical professionals, a social barrier which primarily affects women, people of colour, and gender diverse people, so content online can be an entry point to having more understanding about oneself and accessing more attainable information.
For those who can manage their neurodivergence without official or medical forms of support, self-diagnosis, or at least self-identifying, can be a beneficial way to make accommodations in everyday life, and according to the anonymous postgrad student, self-diagnosis “provides peace-of-mind.”
Self-diagnosis might allow a neurodivergent person access to certain support networks, many of which are published on social-media; new habits, ‘life-hacks’, and tips which help them to manage life a bit better, even without access to a medical diagnosis or medication.
According to McMillan, “it gives people the language and knowledge to understand themselves and be less harsh on themselves for not being able to participate in a neurotypical society like neurotypicals can.”
“Self-diagnosis for me was really for peace-of-mind,” the same anonymous postgrad student told Canta.
“I take it with a grain of salt because it's not a professional diagnosis, but from what I've gathered online, and what I’ve learned from friends who are officially diagnosed, I fit a few of the criteria for ADHD”.
He explained that although that self-identification was not enough for him to want to seek a medical diagnosis, it has been enough to expand his research.
“I have read a bit more about it, and started to understand why I have all my habits, in order to function, and I've looked into coping strategies recommended for ND folks,” he said.
The amount of readily available information on social-media, published in easily consumable bite-sized portions, has made access to knowledge, especially about neurodivergence and mental health, a lot easier. Social media is also a place to access information where most people feel comfortable engaging with it.
However, as a source pointed out – TikTok is not always ideal, as your one stop shop for information. Those seriously looking to self-diagnose are better to also engage with self-directed research in medical journals, professional websites, scholarly sources – and of course, professionals in the field.
Ultimately, whether through social-media or another social lens, seeing yourself represented in media is crucially important to self-understanding and identity.
“While the rest of the world catches up and starts to portray neurodivergence accurately, helpfully and respectfully, I think the creators on social-media are doing a great job of it now,” McMillan said.
Caitlyn McMillan is still recruiting participants for a focus group, for her research on TikTok, neurodivergent content, and self-understanding. If you’d be interested in knowing more, she invites you to get in touch with her at cbm59@uclive.ac.nz.