How A TikTok Video Led To My Autism Diagnosis
I’m a millennial that realized I’m autistic through TikTok, an unfortunate cliché in the #actuallyautistic community. I both despise and am addicted to social media, TikTok being my poison of choice. Although I’m trying to kick the habit, I don’t think that it’s all bad: TikTok did, ultimately, lead me to a long-sought and life changing diagnosis. But I also don’t need to see the science to know that this particular social media app messes with brain chemicals, because I’ve lived it. Regardless, there’s been a lot of discussion and research about it in the psychology world. An article from Forbes titled ‘Digital Crack Cocaine’ sums up the main points on why TikTok is bad for brain health. As a person with ADHD, which is a dopamine disorder, I’ve always been particularly susceptible to addiction. My brain doesn’t process dopamine the same as other people, so I often have to ‘manually regulate’ if I want to achieve a more operative flow of dopamine. There are a whole range of activities that ratchet up dopamine flow, some of which hijack the system, like drugs and alcohol. I would say that TikTok is a dopamine hijacker in that it feeds a negative feedback loop: to maintain the dopamine high you get from consuming content, you have to keep consuming more and more screen time. All of that being said, there are a lot of people with ADHD on TikTok, probably because they’re as addicted as I am. When I started using TikTok, however, I had no idea that I am neurodivergent.
The unnerving thing about TikTok is that the app’s algorithm seems to get to know you better than you even know yourself. TikTok’s data collection and processing algorithms are probably the most powerful of all major social media. The Chinese government has made TikTok’s algorithm a banned export to any other country, recognizing it as a Chinese technological asset. It is ironic, then, that the use of TikTok within China is also banned. There’s been tons of talk in the White House and Congress about TikTok over the past couple of years as well, with Trump set to ban it entirely at one point. The point is, both the Chinese and United States governments recognize how powerful of a tool TikTok can be. It is not a surprise, then, that the app has been creating its own trends and influences on culture. Enter the #actuallyautistic community, which is to say, people that are autistic (as opposed to their families, caretakers, and other non-autistic people). Using the hashtag, autistic people started calling attention to issues that autistic people face from within and without the community. The issues surrounding ‘Autism Awareness Month’ in April are both.
Raising awareness for an overlooked cause is usually a good thing in theory, but not always in practice. The Susan G. Komen Breast Cancer Society is one oft-cited example of this, with critics claiming that ‘pinkwashing’ (the color of the iconic ‘Breast Cancer Awareness’ ribbon) does nothing to actually raise awareness about the disease and everything to capitalize off of it. The same problem presents itself in Autism Awareness Month with Autism Speaks and similar organizations pushing the color blue and puzzle pieces. The truth is, real awareness of what autism is and how to accommodate autistic people is extremely limited in modern society. I know this because, at 34 years old, I was diagnosed with ASD 1. Not a single family member, teacher, doctor, employer, friend, or mental health professional (and there had been MANY) had previously been able to identify me as an autistic person. It took about six months of the TikTok algorithm getting to know me before I noticed that a lot of videos about autism were coming up on my ‘For You Page’. It was in April, during autism awareness month, that I saw the video that made me realize I was probably autistic myself.
That month, the #actuallyautistic community took advantage of TikTok’s viral soundbites to make people more aware of the characteristics, needs, and lives of autistic people. The catchy “Surprise Autism” sound made by @abcnewsnetwork (not affiliated with ABC News) started a trend in autistic people drawing attention to their often unique or overlooked traits. The particular video that made the difference for me described a lived experience of what is sometimes referred to as Visual Snow Syndrome, aura without migraine, or the outdated ‘ocular migraine’. It is a very specific and rare neurological phenomena that has not been studied in any depth by medical science, but seems to occur at disproportionately high rates in the autistic community. Although there is not an agreed-upon universal term for these visual disturbances, they are all caused by neurological differences and mis-firings in the brain, not the eye. Up until I saw this particular TikTok video, I had never heard anyone else describe what I had been experiencing since before I could remember: a visual disturbance that appears as ‘particles’, or small bugs clustering in the sky. I had been experiencing odd visual disturbances all of my life, but every time I described them to anyone, they wouldn’t understand what I was talking about. The episodes were infrequent enough to ignore for the most part.
What I couldn’t ignore were the many mysterious and seriously disabling psychiatric symptoms that I have consistently struggled with throughout my life. Learning about what autism is directly from other autistic people led me to eventually being professionally diagnosed with ASD 1. As it turned out, most of my psychiatric problems were being caused by masking my autism and neurological differences related to being autistic. Reframing the conversation allowed me to both accept and improve myself in a way that I had previously been unable to. The autistic community has reframed the concept of autism awareness and in doing so has made a difference in the lives of many neurodivergent people. This is why I truly believe that autistic people should be at the forefront of conversations regarding our own lives.
