I increasingly see people in my timeline complaining about the many TikTok videos in which young people identify as autistic or ADHD. The fact that a teenager writes under a video about ‘autistic characteristics’ that she recognizes them all in herself – even hating wearing socks – is seen as problematic.
The outrage usually focuses on how these individuals would misuse concepts from psychology and thus attribute arbitrary behavior to a disorder. The word ‘pseudoscience’ is usually thrown around quickly.
The professional media also write with concern about how young people eagerly throw around DSM-5 concepts on social media and whether or not they engage in self-diagnosis. RTL News headlined in May with ‘Young people make their own diagnoses via TikTok: ‘If you recognize this, you have ADHD”. In NRC Last week an article was published in which the incorrect use of concepts from psychology (therapy language) on social media is explained based on the reading: “Over the past five years, teenagers have read 40 percent less. They now often spend that time on social media, where the language of therapy is the dominant language for forming self-understanding.” A rather remarkable conclusion, since online communities for neurodivergent people often have heated discussions about which novel characters are autistic. This is how things get heated on Reddit when camp A claims that Hermione is out of the Harry Potterbooks is autistic – and camp B denies that.
By others neurodivergents whom I follow on Twitter and Instagram, I have found my self-worth
Neurodivergent is the term that the makers of these videos often use for themselves. Scientists mean: someone with a brain that works differently than average. Autism, ADHD, dyslexia, dyscalculia, giftedness and high sensitivity all fall under that umbrella term.
What is striking about the concerned reactions to young people who loosely adopt terminology from psychology is that those young people themselves are never asked anything. They are always written from the perspective of healthcare providers, who see that young people are making away with their concepts.
Self-knowledge, acceptance, self-esteem
What is it like for neurodivergent people to be on social media? I spoke to five people with a mental health diagnosis about this. From this I learned that while articles often point out nonsensical and trivial TikTok videos about mental health, neurodivergent people looking for like-minded people can easily maneuver past them. A bit like how you automatically swipe an annoying influencer from your feed.
Some neurodivergent individuals look for recognition within a niche community on social media, while others are not concerned with this at all. And there are also heated discussions, for example about whether or not it is wise to share intense experiences without warning.
If you ask them what they get from social media, the words are: self-knowledge, acceptance, self-esteem, recognisability and support.
The videos also help to further develop the way I can deal with myself and which tools I can use for this
26-year-old Kim Plaizier from Rotterdam automatically comes across videos about mental health on her timeline. She herself has been diagnosed with ADHD and autism spectrum disorder (ASD). “Films about my diagnosis help me feel less alone,” she writes in a private message. “And they also help to further develop the way I can deal with myself and which tools I can use for this. I don’t really feel part of an online community, but by watching videos and commenting on them, we help each other to feel less alone and gain more self-knowledge and acceptance.”
Liza van de Ven (30) from Neunen was also diagnosed with ASD and ADHD. “Mental health care is still very negative. From an early age I learned what I could not do as an autistic person instead of what I could do. The internet has given me so much more information. By others neurodivergents whom I follow on Twitter and Instagram, I have found my self-worth.”
The positive experiences of these people are sometimes forgotten in the debate about mental health on social media. That doesn’t rule out the fact that there is a lot of misinformation and hurtful comments going around in this community, says Kim Plaizier. “It is sometimes very difficult to see people who are still at the very beginning of their acceptance phase and talk about their negative experiences and intensely raw emotions.”
Emancipation movement
At the same time, accessible platforms such as TikTok, Twitter and Instagram offer people a way to make themselves heard. In this sense, the internet has an emancipatory effect.
Thanks to the Worldwide Web, people could communicate with typed texts from the 1990s onwards – an accessible and fruitful way for like-minded people to find each other and exchange ideas. “From those early autistic social groups of the 1990s, an autistic culture, movement, self-advocacy and the claim that autism is a valid form of existence emerged (valid way of being),” according to a scientific article in the psychology journal Frontiers in Psychology that draws on a wide range of research from the field.
Compared to the infancy of online social life, today’s TikTok is an evolved version on steroids, in which users are bombarded with viral videos. Critics rightly point out the addictive effect that likes and comments on social media can have. In search of the next dopamine shot, makers share even more videos that have a high chance of going viral. For example, algorithms can encourage people to identify themselves with a mental illness, whether they actually have it or not.
But in the public debate on this subject, it is good to be reminded of this: the self-diagnoses on TikTok were preceded by an online emancipation movement of neurodivergent people, partly made possible by the now fragmented social media.