Tiktok’s Neurodivergent Diagnosis Blame Game

How misinformation about neurodivergent conditions on TikTok convinced its users there's a diagnosis for everyone.

by Samia Ali

30 Oct 2024

Getting an accurate diagnosis can be life-changing – it opens the door to support, self-understanding, and often, relief. But on platforms like TikTok, where complex traits are compressed into 30-second clips, the language of diagnosis is being rewritten. What once required careful assessment is now crowdsourced through trends, filters, and hashtags.

The Validity of Self-Diagnosis

There’s no single test that defines what a ‘typical’ brain looks like. But for neurodivergent and mental health conditions, formal diagnosis still follows a structured process, one built on clinical assessment, not online comparison. That said, self-diagnosis isn’t without legitimacy. In the UK, the Equality Act 2010 recognises that support shouldn’t depend solely on medical paperwork. People can request reasonable adjustments based on their lived experience, even without an official diagnosis.

Self-diagnosis can play an important role. For many, it’s the first step toward naming experiences that have long gone unexplained. Those who identify their traits outside a clinical setting often bring a depth of self-awareness that professionals can overlook – an understanding of how their mind actually works day to day. That insight can guide them to the right support and give them greater autonomy in how they seek help.

Many TikTok creators also actively advocate for self-diagnosis, underlining critical flaws in standardised tests unable even to account for the diverse experiences of individuals. In one video, TikTok creator Nikki Valentine breaks down an NYU Study investigating how depression manifests uniquely in Black women – making a strong case for personalised approaches to mental health diagnoses.

Other creators say they feel like limited access to professional diagnosis has created a need to self-diagnose, using whatever information may be most available to try to make sense of their experiences.

The Dangers of TikTok’s Misinformation in The Diagnostic Process

The problem with self-diagnosis arises when it is done without thorough research using reliable sources and self-reflection. If traits are framed and misinterpreted as potential symptoms without proper understanding, the resulting diagnosis can be unreliable.

A study conducted by researchers from Drexel University’s A.J. Drexel Autism Institute found that out of the top results for autism-related content on TikTok, only 27% of the videos were classified as accurate, while 41% were classified as inaccurate and 32% as overgeneralised.

Another study which sought to investigate the quality of TikTok videos about ADHD found that out of the top 100 most popular videos about ADHD on the platform, 52% of them were classified as medically misleading, 27% were based entirely on personal experience, and only 21% were considered useful when compared against diagnostic criteria.

The study also reports that of the 52 misleading videos, 37 videos (71%) misattributed transdiagnostic psychiatric symptoms as being specific only to ADHD, including anxiety, depression, anger, relationship conflicts, dissociation, and mood swings. None of the misleading videos recommended viewers seek out a medical, psychiatric, or psychological assessment before attributing these symptoms to ADHD.

These studies underpin a troubling reality: a significant portion of mental health-related content on TikTok is overtly unreliable. With less than 30% of videos classified as accurate and a lack of encouragement for further research from the misleading videos, users are swayed by the deceptive allure of quick self-diagnosis and superficial self-understanding within a single TikTok scrolling session.

Confirmation Bias of Misinformation

Once users are drawn into a specific niche or type of content, the TikTok algorithm tends to promote similar material on the For You Page (FYP). In the case of ‘mental health tok’ – a term referring to a subset of content that focuses on mental health – TikTok continuously pushes content similar to the videos users engaged with most. This creates a challenge in encountering critical perspectives on misinformation, as users are unlikely to see alternative viewpoints unless they actively search for them.

Then there’s the short-form nature of TikTok’s videos combined with endless scrolling on the FYP – features designed for users to slip into autopilot, leaving them without any chance to assess a creator’s credibility and take information at face value. This, alongside TikTok’s algorithm that pushes similar content, traps users in a cycle where they keep seeing and accepting information that matches their beliefs about symptoms and strengthens their views on self-diagnosis. 

Alarmingly, this cycle has translated into nearly 150 million views of videos about autism filled with misinformation and inaccuracy, unveiling the dangerous impact of unchecked content consumption on the platform.

Combatting The Misinformation

The widespread reach of these videos highlights the urgent need for both critical evaluation from viewers and improved content quality from creators. Misinformation about neurodivergent conditions not only perpetuates myths and misconceptions but also impacts people seeking genuine support and understanding.

Here are a few strategies to help users cut through the smoke and mirrors of the ‘mental health tok’ space.

Challenging Quick Content Consumption

TikTok users need to slow down and start questioning what they see. The platform’s fast-paced content and endless scroll aren’t exactly built for deep reflection. Quick takes won’t get users to real self-understanding. Recognising this is the first step in resisting the deceptive allure of superficial self-awareness that these videos often promote.

Critical Thinking and Media Literacy

TikTok isn’t a formal learning resource; it’s a place where creators share their takes and personal stories. Real learning starts when you critically evaluate the information they’re putting out. But that takes more than just a dose of scepticism. It requires a good grasp of media literacy. Media literacy means you can dissect what you’re watching, spot biases, check the credibility of sources, and understand the motives behind the content.

When it comes to mental health content on TikTok, media literacy prepares users to question the validity of self-diagnosis claims, spot potential misinformation, and search for accurate, well-sourced information. It’s not enough to take what you see at face value; you need to dig deeper, cross-reference with reliable sources, and consult professionals. Embracing this critical analysis is essential for responsibly navigating the flood of information on platforms like TikTok.

Awareness vs. Guidance

The platform is great for raising awareness about mental health. It lets creators share their personal stories and insights while highlighting important issues, helping spark conversations and break stigma. But while TikTok can get people talking, it’s not a substitute for real mental health guidance. Videos often simplify complex issues, generalise topics that require a personalised approach and provide a false notion that they provide a complete understanding of these complex and highly nuanced mental health topics.

Guidance means personalised assessments, tailored treatment plans and ongoing support. These processes are delivered by professionals who have expertise in validating symptoms and accurate diagnoses, and provide the necessary context that goes beyond what users would get from a TikTok video.

For a responsible consumption of mental health-related content on TikTok, users should combine the initial insights they get from the platform with professional guidance.

What to Remember: TikTok Insights vs. Professional Guidance

We’re not trying to demonise TikTok content. Like everything, it has its ups and downs. There are plenty of creators doing amazing work for the neurodivergent community. But our main concern is that too many people are getting caught up in the misinformation. Misinformation in the social media space has fuelled and sustained dangerous outcomes and skewed perceptions of mental health and self-diagnosis. So while TikTok can be a valuable resource, approach it with caution and balance it with professional advice to ensure you’re getting the most accurate and supportive information possible.

 

Further Resources

  1. NHS Mental Health –  Provides information on mental health conditions, treatments, and accessing help through the NHS.
  2. Mind – Offers support, information, and advice for people with mental health problems. Includes self-help resources, details on local services, and ways to get involved.
  3. Rethink Mental Illness – Provides support for individuals affected by mental illness, including practical advice, advocacy, and information on mental health services.
  4. Samaritans – Offers confidential support 24/7 for anyone in emotional distress, including a free phone line, email support, and local branches.
  5. YoungMinds – Focuses on mental health support for young people, providing resources, a crisis text line, and advice for parents and caregivers.
  6. The Mental Health Foundation – Offers information on mental health, research, and campaigns to improve mental health and wellbeing in the UK.
  7. NHS 111 – Provides urgent mental health support and advice through the NHS 111 service.
  8. London Friend – Offers support for the LGBTQ+ community in London, including counselling, support groups, and helplines.
  9. Bipolar UK – Provides support and information for people affected by bipolar disorder, including online support groups and resources.
  10. Depression Alliance – Focuses on support for people with depression, offering resources, peer support, and information on treatment options.