Why I Stopped Using Diagnostic Labeling on TikTok

I stopped being funny and started being autistic. If you have any more than three brain cells you may read that and think that those things shouldn’t be mutually exclusive, and you’d be right. Congratulations for not being dropped as an infant. Much of the last four years of my life has been shaped by Tiktok in ways that I find pretty much all to be equally exhausting. That’s not to say I am not appreciative of all the platform has done for me, I often feel like I have a near-sibling mentality when I think of Tiktok: Only I’m allowed to talk shit about them. I am defensive of much of the community, though it’s an absolutely godless hellhole, there are little crevices here and there of light. While I did see Howie Mandell’s prolapsed anus against my will at 7:45 am on a Wednesday, I also found a community of people who for the first time in my life showed me that I was not alone. I started posting in early 2019, I think, mostly content I would oh my god so loosely refer to as “comedy”. It was a different time. It only took a few videos for me to start really growing on the app, and I quickly made an impression as a “token adhd girl” as I would call it. I talked explosively; fast and energetic, I developed a voice that people stopped scrolling for. That in it of itself is still crazy to think about, but again, it was a different time. I have no confidence I could cut through the oversaturation and get where I am now if I started much later. I would post storytime-esque videos, and because I have raging ADHD, much of my content rather unintentionally surrounded it and the silly situations my dopamine-deprived brain got me into. In early 2020 I started to see dms and comments telling me that I was exhibiting autistic criteria in much of my content, particularly in videos where I would attribute what I was experiencing to ADHD or anxiety. By the way, it is rude to tell people on the internet that they’re autistic. Not because being autistic is a bad thing, but because you do not know them and that is weird and invasive. That being said, I was getting thousands of “bitch ur autistic” comments and dms at this point, and so I started to look into it more. This was right before the first really big wave of neurodivergent content really took hold as a staple of tiktok, so it took a while for me to really understand why everyone kept saying I was on the spectrum. It didn’t make sense, I had spent so much time with psychiatrists, and therapists, and counselors, and in parent teacher meetings, how did nobody see it? But of course, there wasn’t nearly the same research there is today, and I was a pleasant kid. I was bright and made eye contact and was polite and adults loved me, I just happened to also be extremely anxious, highly sensitive, texture averse, prone to overstimulation, pattern-oriented, a meltdown frequent flier, inattentive in class, obsessive with my interests, highly routine oriented, and constantly struggling in one way or another socially. I was a sensitive kid. That was all, right? Jumping forward to a couple years later, I, along with probably anyone who has ever met me, was confident I was autistic even though I wasn’t and still am not interested in going through the formal diagnosis process. I received enough professional validation of it alongside arguably the most steadfast confirmation of autism, the amount of obsessive research I did. I don’t like talking about any of this anymore really because of how Tiktok treated me once I started to use diagnostic labeling or making more content about being autistic, so this is probably the only thing I will write about it. I remember watching this shift in Tiktok’s perception of me happen seemingly overnight. Before I was funny. I was interesting. I was a good storyteller. I made people laugh. I could tell a joke and people knew it was a joke. All of a sudden I wasn’t funny, I was relatable. I was “me when I’m autistic and don’t know social cues”, I was “my autistic ass would do this too don’t feel bad”, I was “This is a symptom of autism, I do this, too”. I would get these comments and these comments alone. I understood it when I posted content that I knew would be captured under the big Nuerodivergent Tiktok Umbrella, but so many of these comments came from completely unrelated videos. So much of what I posted was me telling a story. Often stories I entirely made up, and if not, they were highly exaggerated. I have always excelled at seeming fantastical within the confines of reality, my biggest asset to getting views besides my voice was my ability to tell an outrageous story and the audience buy into it. I memorized stories I wrote and learned to deliver them like I was recounting an experience I had just had, because it was funniest that way. These were funny stories, they were jokes. I know I am a good story teller because nobody noticed I was even performing.People thought it was all real. Before people commented “LMFAO PLS THAT’S SO FUNNY” and all of a sudden it was just “it’s okay, babe, it’s the autism.” I understand why this happened. Sort of. I get that my audience grew vastly once I started talking about autism and much of my audience was on the spectrum, but these comments made me feel so disconnected from myself. They were never intended to be anything but supportive, and I completely get that having a large autistic fan base means there are often well intentioned lapses in understanding, but the one thing I was truly good at, the one thing that made me myself, felt like it was taken away overnight. I didn’t get to be just funny anymore. I was autistic then I was funny, or I was funny because I was autistic. (I don’t want any of this to sound like I don’t like that side of myself, I love that my brain works differently (unless it’s making me feral because there’s a fan on the wrong setting and it’s emitting the wrong frequency), but that’s not the point of this whole thing. I like being autistic aside from this experience, I do not disassociate myself with that by any means, but being autistic online has been an extremely harmful experience for my relationship with myself. I do not want comments telling me why I need to embrace myself more or anything telling me to interpret this differently. Kindly, if you have any inclination to give me advice, simply choose not to.) Very quickly, the algorithm only catered to my autism-focused content. Even now, I am confident that holds true. I started Tiktok as a means to explore my love for comedy and writing, and I was now being punished by the platform for the thing I’d built a following with. I don’t want this to sound like it is about analytics, those reinforce all the other stuff, but that wasn’t really the source of my discomfort. It felt like my audience had developed this deep connection with a version of myself that I never gave them permission to know. I became simultaneously so supported and so one-dimensional, but it all felt so invasive to me. I follow autism-oriented autistic content creators and I love them and the work they do, but I never wanted to be that. I got pushed into this category and the other creators in it accepted me so fully and were so kind, but this whole time I had felt like I hit my head on a rock and somehow woke up in a Trojan horse sneaking into a castle I never had any intention of infiltrating. I think one of the reasons this has been so upsetting for me, is that growing up undiagnosed takes a pretty severe emotional toll. Up until Tiktok basically diagnosed me, I had spent my entire life feeling so completely misunderstood. Accidentally Trojan horsing against my will. I wanted to shout at the top of my lungs that I was not the person everyone decided I was. To beg everyone around me to stop treating me like a sim, customizable to their preference. I have always been a socially flexible person, and I spent much of my life being overwhelmed with the need to please people. I knew if I acted how they wanted, they would like me, which worked fine enough, minus the feeling trapped inside my own brain so often. I didn’t even really comprehend the extent I was masking like this until a few years ago. I have so much empathy for my younger self and wish I could go back in time to explain why she felt so intangibly trapped. I got on TikTok and started doing something that was so truly myself, and I lost a lot of friends for it. My boyfriend at the time told me he hated who I was on TikTok, my friends told me I was annoying in my videos, they all acted like we were all in on this big secret that I was just playing a character on there, (and to some extent, especially as the years went on that became more true,) but it was one of the first places I felt like people liked me how I was. I have been really lucky to have an audience that for the most part has been eager to grow with me, if you were to watch one of my older videos, I would hope you would see how much has changed, and I am appreciative that my audience has given me the room to evolve. That isn’t always the case, and I definitely experienced some resistance each time I shifted my focus on the app to be one step closer to the person I always felt like I was meant to be, but I am grateful to have narrowly avoided the “you’ve changed” comments. Especially when it comes to “comfort creators,” which is what I was for so many people, it’s so complicated to try to grow. People see you as a stable, unchanging, static concept, due to the manner of the algorithm often showing people only one side of the diverse content a single creator produces, so when you finally are confronted with it changing, it may feel like you’re losing a friend almost. Parasocial stuff goes so subconsciously deep sometimes. Begging you to actively remember that everybody you see on the internet in every single TikTok or Instagram post or youtube video is a real person with so much of their life that is not on display. As this shift into Lila=autism happened, it felt like I was losing my identity online. One of the things you don’t know about building an audience until you’ve done it is that you don’t control your narrative. It’s like with any form of art (And I want to be clear I know my TikTok is a dumpster fire I am not claiming it to be art), you as the artist are no longer involved once you complete your piece, it then transforms to become whatever it’s audience interprets it as. I feel I should note that while this made me feel really icky, I continued posting this sort of content off and on because I know the impact it can and did have. I have seen how my videos were deeply important to people, early in my exploration of autism I remember the first time seeing content that opened my eyes to a world of people who knew exactly how I felt. I have felt that sigh of relief from discovering that so many people understood the parts of me I couldn’t myself understand. I don’t love making that content, but I will never be held back from posting something that I believe holds moral value like that because I don’t like how it affects my narrative. There are more important things than people thinking I am funny. One of the reasons I stick up for Tiktok so much even now is that I have hundreds of dms from people telling me that something I posted was deeply meaningful to them and brought them solace when they needed it most. I don’t mean that in an egotistical I am God kinda way, but I know the importance of truly feeling seen. When I feel inclined to post something of this sort, I go into it knowing it’ll go viral, because they always do, and I make peace with this being a role I play online. I am overwhelmingly grateful to have the opportunity to provide something that matters to people. I know someone may read this and say that I should just do it all and not care what other people think. I would do that except my life’s dream is to be a comedian, so when the entire internet has contextualized everything I say to be seen through a “mental health advocate” lens, it’s really a bummer and not great for my career aspirations. I know that anybody who views me like this, or leaves these comments, or my autistic friends who encourage me to make autism-related content, don’t mean any harm, I hold nothing against them. Especially my autistic content creator friends, I cherish you all, but I ask that you remember that I do not want to be an autism creator. That is not my calling, if anything it makes my tummy hurt now.

Wouldn’t it be a bummer if none of this was about the autism and it’s all just because I am actually deeply unfunny… I’m deciding against that idea I am the funniest person alive

I’ve seen a lot of discourse about the importance of using diagnostic labeling online because TikTok has taken the term neurodivergent and run with it. It gets viewed as if “neurodivergent” is a diagnosable condition, rather than its reality as a big umbrella catching lots of different things with unique criteria for each. Neurodivergency is extremely vast, I completely understand and agree with this sentiment, but I will personally not be using diagnostic labeling. For one, I am not qualified, there are so many creators that make sharing reliable autism research their passions and are incredible resources. I am not one of them. I also know the consequences of being publically wrong and spreading misinformation. Before I knew I was autistic, I thought all of its symptoms were to be attributed to my ADHD and I made a lot of viral videos about my experiences. People saw those videos (and while you shouldn’t diagnose through a TikTok, again, it all comes back to how those few videos that first give you hope you aren’t so alone after all, there’s a completely reasonable eagerness to identify with something in this context.), and I contributed to a really harmful and incorrect rhetoric about ADHD and autism being unilateral. I don’t know everything, but telling my story is part of my job. Talking about my experiences is what I do, so for me to do that ethically, I do not feel comfortable disclosing diagnostic labeling. Also obviously the entire essay is a big reason why I don’t do this anymore. I have said this once, but I want to be very clear, I do not want advice on this. I do not want explanations on what everyone meant or anything of that sort, which is the response I get any time I attempt to have this conversation online. This is not a universal experience, and if my career aspirations and identity weren’t so linked to what I create, I am certain it would all be a very different story. I am finding my identity once again, both online and in person. Writing these lil guys has been very helpful in accomplishing both. It feels unbelievably good to have people who follow me read these and give me the chance to develop who I am online to be more than the TikToks or silly things I post. I have never felt more connected to myself as I do writing and publishing this kind of stuff. I have been posting for a large audience for four years, and I feel, truly for the first time, like I am being seen.