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Is it cool to be autistic now?
That seems to be a question a lot of folks are exploring in online discourse, particularly on TikTok. And, honestly, a part of me gets why it has become a “hot topic”. Now more than ever, autistic people are visible on mainstream platforms, and their discussions of being neurodivergent have shattered preconceived notions on what autism is. Quinni, the autistic queer teen of the 2022 reboot of Heartbreak High, is the show’s breakout character. Chloé Hayden, the actress and disability rights activist who plays her, has been making waves by advocating for representation of autistic people. While some of the discourse I’ve seen is innocuous at best, most of it is harmful, even dangerous.
I first want to stress that no health matter is a trend, nor should anything health-related should ever be described as a trend. Sure, certain things get more exposure during certain times, and the exposure of those things reflect wider cultural concerns and processes of their respective eras. I’m definitely no expert, but I think the increased visibility of autistic people reveals how, generally, the pandemic has caused people to care less about how they’re perceived, how social norms are finally being reckoned with after shutdown has forced us to rethink how we move in the world. Even so, health conditions and disabilities are more than how many views a 20-second clip gets or the number of comments under a post. It’s real-life shit that can affect the core of who somebody is. To call autism a trend is disrespectful and downright ableist.
Honestly, as I type this, I’m scared shitless for when this gets published. I’ve always avoided internet debates; they stress the hell out of me, and I prefer to just observe and think to myself. Moreover, I’m still struggling to accept being autistic myself. My parents knew I was autistic since I was a child, and they were encouraged to seek an evaluation for me by doctors. I had all the signs: delayed and limited speech, lack of facial expressions or interest in playing with others, repetitive movements like rocking back and forth and shaking my head side to side, meltdowns, you name it. Ultimately, my parents never took me to a neuropsychologist because they didn’t want me in special education or be “different”. They wanted to raise me as if I was “just like everyone else”.
But I’ve always felt different. I never knew why. It was incredibly fucking isolating.
Long story short, my therapist clocked my autism from the very moment we met. It took me a year to book an appointment for an evaluation. On October 20, 2022, I was officially diagnosed with autism spectrum disorder. I’ve written about it before on here, and I’ve been able to do so because I’ve been able to learn how to separate my “writer” persona from my true self. I can pour my heart out online, but also maintain some level of distance. Of course, they still bleed into each other and inform one another. And I still experience soul-crushing anxiety when an article of mine is published because I am being perceived.
In “the real world”, I rarely talk about being autistic. Not at work, not in grad school. I barely talk about it with family and my only two real friends. My partner is the one I’m most comfortable sharing my autism with, but even that’s hard sometimes. Letting go years of shame is hard. Most of the time, I’d rather be invisible and unknown. April is Autism Acceptance Month, and now more than ever these thoughts weigh heavy on my mind. Visibility is important, but it puts us at risk in a world that is not built for neurodivergent people. Even though an entire month is dedicated to honor autistic people, neurotypical voices still dominate the conversation because they believe that we can’t speak about our own experiences.
Autism isn’t new, but the way it’s perceived and researched is constantly changing. The concept of it was coined in 1911 by German psychiatrist Eugen Bleuler to describe a symptom of schizophrenia. Those with the “most severe” cases of the mental illness embodied an “autistic thinking” in which they had the infantile desire to avoid reality and indulge in fantasy and hallucinations. Bleuler credits Sigmund Freud and Havelock Ellis for the term’s etymological roots, both of whom employed the concept of “autoeroticism” in 1905 to explain hallucinations joined with self-soothing that preceded an infant’s interactions with their environment. This particularly sheds light on how, to this day, autistic adults are relentlessly infantilized.
Leo Kanner, Austrian-American psychiatrist and physician, is credited as the first person to acknowledge autism as we (somewhat) know it today. In 1943, he examined children, mostly boys and all of them white, with “extraordinary intelligence”, delayed speech, and an inclination towards routine. Kanner published an article claiming that autism was its own psychiatric disorder, and this eventually made its way to the second edition of the DSM. Bruno Bettelheim, Austrian psychologist, expands on this understanding and adds that autism was caused by unemotional mothers.
It won’t be until the 1960s to 70s when autism would be considered a developmental disorder with biological roots. However, the DSM III noted that an autism diagnosis can only happen if there is a “lack of interest in people, severe impairments in communication and bizarre responses to the environment, all developing in the first 30 months of life”. The revised version of the third edition, released in 1987, began to recognize autism as a spectrum even though it doesn’t actually use the term; it also dropped the “first 30 months” requirement. DSM IV breaks autism off into sections like Aspergers Syndrome and Childhood Disintegrative Disorder, while DSM V collapses all of these categories into a single label: autism spectrum disorder.
For the sake of getting to the point, I’ll stop here. The history of autism research and diagnosis is so expansive and nuanced, they can be the focal points of a series of articles. But it’s important to consider because, again, we’re continuously rethinking and re-evaluating what it means to navigate the world autistic, what it means to be born autistic. It’s also important because you can not only trace the dehumanization of autistic people as a whole, but also gender and race bias in autism studies and assessments. White children and cis boys are among the most diagnosed, with scientists claiming that it’s due to genetics. Autism in women and BIPOC are drastically underdiagnosed, or worse, misdiagnosed. When I was hospitalized for nearly killing myself at 15 years old, I was told by a white nurse that I’m a “bomb” that can “explode at any moment”. A white doctor diagnosed me with clinical depression and generalized anxiety disorder. Autism in Latinas is considered, to this day, “rare”. Now I realize that my depression and anxiety are real, but they stem from my autism.
Things are slowly improving. More women are getting diagnosed with autism than ever before, which means more autistic people are getting the help they need. Also, with increased awareness, people are now able to self-diagnose and seek the resources they need if a formal diagnosis is inaccessible to them. (Side note about self-diagnosis: our healthcare system sucks ass. Self-diagnosis is literally the only option for so many folks. I am privileged to have a formal diagnosis because of my father’s insurance and access to resources in New York City. Don’t be an asshole about people who self-diagnose.)
Why is all this important? According to some research, more than 66% of autistic adults are unemployed. Demographics reveal that 9 out of 10 autistic women have been sexually assaulted. Autistic people frequently have co-occurring physical and mental illnesses/disabilities; for example, 25% to 40% of autistic people experience epilepsy or seizures. 56% of autistic children in the U.S. live in low-income households. Finally, autistic people are 2.5 times more likely to have an early death.
And people still want to call it just a trend.
Intrinsically, there is nothing wrong with autistic visibility. If anything, there should be more of it. I want a world where autistic people can freely take up space, space that is free from ableism and accommodates us. It is the world that disables us, defines what types of bodies and thought processes are privileged, and makes us “other”.
We need to be more precise. Issues lie in white people wanting to deflect their whiteness by exploiting other marginalized identities and the sensationalization of mental illnesses and neurodivergent conditions that has flourished on social media for far too long.
On TikTok, @fazolibreadsticks eloquently illustrates that “whiteness gives us access to everything but oppression. That’s the only thing we can’t colonize. So, what do we do? We turn oppression into social currency.” They comment on the obsession with “uniqueness” the internet has; white people get “extra points” for belonging to identities that are marginalized like queer, trans, neurodivergent. A lot of white folks are blind to their white privilege and will do everything in their power to remove themselves from it. Obviously, any disabled person can be oppressed regardless of their race. However, because these identities are being claimed, they are being linked to radical politics. It’s as if white people become exempt from critique or are no longer privileged once they bring up what makes them “different”. They make themselves “less white”.
The worst part of it all is that, in my experience, it’s often the same “white neurodivergent LGBTQ+” individuals that will be the most performative or make spaces unsafe for BIPOC. I once flirted with a white girl whose mental illness was the subject of 90% of her online presence — she called me “exotic” and “spicy” upon learning my Puerto Rican ethnicity. There are countless stories in which this specific group of people will exacerbate their othered identities to casually be racist. Their obsession with labels and being discriminated against is a colonial desire to center whiteness.
Colonial power over difference and oppression coincides with how psychological and neuropsychological disorders become social media aesthetics. During the prime years of Tumblr, it was cool to be a “sad girl”. There were blogs dedicated to fetishistic images of self-harm. Pro-eating disorder posts utilizing “thinspiration” hashtags would get thousands of likes and reblogs. Gifs from Skins or Lana del Rey music videos were pillars of online circles. It was horrifying; young people with easy internet access absorbed these images and internalized them. Also, the meaning of what it meant to have a mental illness became diluted.
Similar things are happening on social media today concerning autism, particularly on TikTok. Autism has become memeified — there are a plethora of TikToks joking about having “autizzy” or a “touch of the ’tism”. Traits of autism like struggles with socializing or experiencing overstimulation are associated with cute or quirky aesthetics. There are videos of neurotypical people saying they’re “so autistic” for acting a certain way or that everyone’s “a little autistic”. Autistic girls are the new manic pixie dream girls. Altogether, medical misinformation can easily spread, and numerous young people are exposed to autism solely through these bite-sized clips or Instagram stories.
If you scroll through hashtags on TikTok like #actuallyautistic, you’d see mostly white content creators.
Accounts by autistic people that show the realistic intricacies of autism, and are actually funny, exist. @kaelynn_vp is an autistic therapist and advocate, who debunks myths about autism and was just recently the keynote speaker at a Gala for Project Hope Foundation, the largest autism-service provider in South Carolina. @asapskrr420 is a Black and trans autistic content creator, often sharing his special interests like Adventure Time and using hilarious audio clips to make jokes for autistic folks. @saranne_wrap is a Puerto Rican autistic TikToker who draws you in with her story time and get-ready-with-me videos. All of these creators are just a few of many.
I am still coming to terms with who I am. My therapist reassures me that this is okay. Despite toxic positivity and love yourself mantras on social media, I don’t have to be totally okay with myself right now. One thing that inspires me is seeing how many brave autistic people talk publicly about their traits, favorite stims, hyperfixations, things that cause them to shut down, and strengths that come from their autism.
Say it with me: Autism is not a trend. There’s this popular saying I’ve seen circulated in autistic circles: if you meet one autistic person, you’ve only met one autistic person. Not every autistic person has the same traits; embodiments of autism vary and intersect with race, gender, class, and more. Autism, however, is being exploited by certain white folks wanting to center themselves in oppression and is being subjected to sensationalization. The internet’s a fucked up place. That won’t change.
There are things we can change and work towards. We need to give adequate resources to autistics so we can not just survive, but succeed. We need to have autistics lead autism studies and conversations. We need to empower the voices of different autistic groups and people.
If you’re complaining that “everyone’s autistic now” and it’s just the latest internet trend, you’re missing the mark. What you’re probably really saying is that you don’t want to see autistic people on your screen because it bursts the bubble that societal values have cultivated. What you’re actually saying is that you refuse to see autistic people in a complex, multi-faceted way because it doesn’t align with the monolithic, stereotypical image you have in your mind. Autism has always been around, and it will continue to be around even as new research and ideas on it come to light. For now, I just want every autistic person, despite everything, to have a person they can rely on, give themselves grace, and be safe.
This is so good, thank you! I loved this line: “It is the world that disables us, defines what types of bodies and thought processes are privileged, and makes us “other”.”
While this may be true for what used to be known as Asperger’s syndrome or even level 1-2 autism, remember that 50% of people with autism never develop spoken language at all. Redefining autism as something other than a disability prevents services like speech therapy from being reimbursed and mandated. Not everyone needs verbal speech- many use picture systems etc, but fundamentally the delayed expressive language and often receptive language of autism IS a disability and that is only one aspect of autism that causes disability. I do think that in this popularization of autism, the children and adults who can’t advocate for themselves who have profound autism are often left out of the debate
I think is good to be trending when you got a society that assumes to be normal when they see your child having meltdowns you get people telling your child he is naughty or bad behaviour I think the people should be educated. Not every disability is visible.
👋 hi
Newly diagnosed neurodivergent person here. Part of what gets me about this is that the world expects so much of you on a constant basis, constantly telling you to swim faster and faster even when you feel like you’re drowning. And still getting upset when you make a mistake, calling you lazy or worse, despite all the work you put in and feeling constantly exhausted.
Thanks for writing this.
I, too, had a delayed diagnosis of autism. During multiple evaluations as a child, I was deemed too “expressive” to be autistic. Then not one, not two, but three therapists told me (as an adult) that I REALLY needed to be evaluated. So fine, I did, and here we are.
However, I actually do question whether there is too much self-diagnosis and also whether anyone is actually neurotypical. I don’t go to TikTok much, but I know SO MANY people in real life who are now “on the spectrum” or “neurodivergent.” Like, it feels that every week someone new is talking about their own autistic tendencies. I questioned a friend’s meme post not long ago and she told me I didn’t get it because I’m neurotypical. Again, eye roll. I have told only a handful of people about my diagnosis. I was a fully-formed adult when I was diagnosed and I don’t need accommodations, so what’s the point? I want EVERYONE to get the support they need, whether it is a physical or mental condition, and I try to work toward that and no, I don’t think it should require a formal diagnosis to get support or services.
Anyway, I totally get what you’re saying with people elevating themselves to oppressed status and I agree with you that it’s wrong and harmful–not even just about autism, but about all the things. I will check out the people you’ve recommended here. Thanks for writing this.
Thank you.
Thank you for writing this, I have noticed a lot of these trends surfacing on the internet and you really eloquently broke them down. Also, I definitely want to check out your recs!!
I really liked your section that starts with ‘we need to be more precise’ and agreed with the analysis. But to me, it goes counter to your overall argument – I think becoming diagnosed as autistic or self diagnosing as autistic or otherwise neurodivergent IS a trend, and for some of the reasons you outlined here, not a particularly productive one. Still, I appreciate your thoughtfulness in writing this piece
Thank you so, so much.
I have some mixed feelings about this internet phenomenon: as much as I can understand how autism has gotten watered down in the way it’s talked about, I’m also aware of many of these tiktoks are autistic people just… being themselves and expressing themselves in an era where respectability politics and “cringe culture” exist.
Making memes of one’s existence can seem so strange because it’s the first time non-autistic people get to experience us having a say about our condition, under our terms – not from someone who took us under their wing, and even outside of academic, health or even activism contexts. But us as people just being people.
There is something else at play, and it’s that tiktok scratches the itch for “nuggets of information” in a way that satisfies many, regardless of neurotype. I have a hard time explaining things about myself in few words, I’m prone to infodump. In my experience, most prefer nuggets of information.
On first instance, I was inclined to think that most of this watering down thing is from people who have never immersed themselves in autistic communities (as opposed to “communities about autism”, that center anyone but autistic people). So it makes sense the conversations veer to strange and/or harmful directions.
With that in mind, I want to thank you for bringing to the table how colonial power operates in the matter of visibility, because this has been a thorn in my side not just in outside coverage of autism, but in autistic communities as well. I didn’t know how to put a finger on it until reading your article. It explains most of the lack of solidarity I’ve observed for people who challenge views within these communities, and of course, how commodification into aesthetics happens. Discussions about autism feel incomplete without discussions on how whiteness can permeate them, and what gets elevated within these power structures.
This has been a long winded way to say, again, thank you so much for writing this.
Thank you so much for writing this! I work for an autism charity and although there are so many fantastic autistic people sharing their lived experiences and evidence-based information online, I feel that they are drowned out by the louder white voices. Although I think Chloë Hayden’s character was fantastically written and that she is a wonderful activist for some autistic people, it worries me how many people see her and her opinions as the only way to be autistic. She has certainly experienced hardship and ableism in her life (such as when she was denied access to a sensory room at Harry Styles’ concert in Melbourne), but ultimately, she is a white, educated and economically privileged woman who has access to so many opportunities that other autistic people are denied. I was particularly disappointed that the Sydney Opera House’s event featuring her only included young, white, educated autistic women on its panel, as that would’ve been a fantastic opportunity to bring together autistic people across a range of ages, races and socio-economic backgrounds to share their lived experiences. Indigenous Australians in particular struggle to receive government funding if they have a disability, and many autistic First Nations Australians go undiagnosed or receive no support as our government services aren’t culturally appropriate.
I really appreciate you sharing your lived experience and hope that the neurodiversity movement (coined by an autistic woman who is rarely credited by her fellow academic peers!) begins to allow a wider variety of perspectives to be uplifted, with white neurodivergent people able to recognise their inherent privilege as white people in a post-colonising world.
Hi, just wanted to say, if you are speaking about the All About Women festival’s ‘Actually Autistic’ panel earlier this year (2023), the panel was moderated and participated in by Dr Amy Thunig, an Indigenous woman. If you are speaking about a different panel, then my apologies!
Oh I didn’t know that, my apologies! It’s great that they had some Indigenous representation as part of that event, I just wish it had extended to the panellists as well.
I appreciate your vulnerability, Lily! I haven’t been diagnosed with autism, but am a Latina diagnosed with Clinical Depression and aspects of what you’ve written speak to me. I also appreciate the included research. Definitely thoughtfully and well-written!
Thank you for writing this. I was diagnosed as an adult and have really struggled with it, in part for reasons related to what you write about here.
For me as a white person with a lot of privilege, it’s really important that part of accepting myself as autistic is listening to and being in solidarity with people who are more affected by ableism and other forms of oppression than I am.
Here are a few organizations/resources/things I have found helpful to that end.
“Communication First” –advocating by and for people who can’t reliably communicate with mouthwords.
The movie “Deej” –This is a movie about, and co-produced by, a non-speaking autistic young man. It also features some of his poetry.
“The Autistic Self-Advocacy Network” or ASAN, run by and for autistic people
“The Color of Autism” Supporting black autistic people (seems a little more focused on families than autistic people themselves, but it still has some good stuff).
The short movie “My Disability Roadmap” –can be watched for free on its homepage from likerightnowfilms. Short film about a disabled young man who uses a communication device. He’s not autistic, but I think connecting with broader disability rights community is important.
Lateef Mcleod is a black disabled poet and activist.
I appreciate the links you gave and would love to hear about any other resources people have found helpful for centering those who are most impacted by ableism and oppression.
[Sorry if this ends up showing up twice. I tried posting this before with links but it didn’t post, so I’m reposting without links, I think this is all pretty Google-able.]
Thanks for sharing your perspective, and for giving us a few folks to follow.
“We need to have autistics lead autism studies and conversations.” YES.
Thank you for writing this article!
Thanks again for the important writing Lily!
Is calm and respectful disagreement about mental health frameworks in the peak Tumblr era and/or about the intersection of racial politics and disability politics okay on this post? I am not generally someone who cares about rudeness but I don’t want to be rude to someone who’s scared to express herself but doing it anyway.
(If it matters: I’m autistic and also have a heavily stigmatized mental illness, and while I don’t know my exact background I’m almost always read as white.)
I don’t do tiktok or really much of any social media, but I can say in the real world outside of the internet, being or acting autistic isn’t and never has been cool or trendy. But I’m glad that autism is more widely known and talked about, because in the 90’s and early 00’s hardly anyone was getting diagnosed unless they had extremely severe behavioral or learning challenges.. and even then, sometimes not. Even though I am autistic, I had no idea what autism really was outside of the most extreme stereotypes until quite recently. Instead of autistic I was labeled as a freak, a social outcast, and a problem. And I saw myself as such. I don’t tend to see a lot of people suddenly going from totally normal to self identifying as autistic. It mostly seems to be a lot of people who struggled their whole lives suddenly realizing we’re not freaks and problems, and actually we’ve been subjected to ableist abuse our whole lives for shit we can’t control and we’re kind of pissed. Lol. Internet culture is all about trying to find some aspect of one’s identity that can be exploited for attention, everyone is doing that everywhere on social media and it’s annoying and problematic. But I don’t think it really reflects what’s happening in real life.
Thank you Lily for this article! I don’t do TikTok but I agree about the serious whiteness issues in autism discourse. And eg work places where white cis men and sometimes cis women are often rewarded, including financially, for applying autistic ways for the benefit of profit, and people of color are fired for eg speaking directly or requesting written materials in advance or the most basic sensory accommodations.
Ableism as we know it and the pathologization of autism are so, so deeply tied to white supremacy and colonialism/capitalism. That should build white autistics’ stake in dismantling these but that is too rare.
Really appreciate this article
I was diagnosed in childhood as a girl in 1999 (which was probably even more uncommon back then)
I’ve always had a bit of a weird relationship with it. I didn’t really consider myself that way because the image of autism was always one thing: boys who struggled with reading facial expressions, narrow interests, and had a certain affect and way of speaking, and difficulty functioning. Basically struggling with all the things I didn’t
And the support was kind of the same. I’m thankful that I was able to receive support at all but it fit that narrow mold. They once gave me a laminated chart with Velcro cards with pictures on them, we put this card on for lunchtime, this one on for home time, this one on for clasroom time…I was like…ok? lol, I didn’t really need a teachers aid or a one on one support either.
The diagnoses was never really helpful for me, what should have been addressed was the anxiety which I’m kind of mad that I never got treatment for that in highschool or early adulthood. Someone actually explained what anxiety was when I was freaking 25, an actual thing that could be addressed and not some stupid background noise I had to suffer through my whole life
I think back then there was a bit of a perception that all autistic people were “a little bit r******d” (I use the word to illustrate the attitudes of the time, not as a descriptor)
When I first learned that autistic women actually existed and presented differently it kind of blew my mind. Similar thing with Tik Tok. But I’m conflicted about Tik Tok, I think it can spread misinformation (if you can do this you have ADHD! if you do this your Autistic!) but it’s also given neuro divergent people a voice which they never had before (something I remember first hand) and as such have been able to push back against BS like Sia’s disaster film.
But anyway, Whilst I have no doubt the diagnosis was correct I don’t really Identify with the label. I feel like I’m coopting struggles I just don’t have and I feel like I operate in the world like a “normal” person. Somehow I just managed to figure it out on my own without support…I’m kinda mad they were so insistent on stopping me from stimming (and I found that perfect stick on the ground and you took it away from me! how dare you) but like…I kinda stopped doing that around other people anyway and it doesn’t cause me any pain.
but yeah, I am glad about the visibility because it’s helped me understand things better. I’ve even seen people describe certain things and I’m like “oh shit, I do that too” it’s really adhd to separate things and understand what is a function of the neurodivergent brain and what is regular anxiety, can you separate the two? I dunno.
Diagnosed at 36, last August. Struggled my whole life, finally feel like I know who I am. Thankful for this article
thank you so much!! self-diagnosed autistic here. you have expressed lots of my feelings around this issue.
Another cool organization I just learned about is the Autistic People of Color Fund (https://autismandrace.com/). They are run by autistic POC and provide direct microgrants to autistic POC. They talk about autism and race a lot on their social media.
And folks who are able can donate to them through their fiscal sponsor, the Autistic Women & Nonbinary Network, here: https://awnnetwork.org/apoc/
I don’t know how to feel lol. My mother had me diagnosed as autistic in middle school and I don’t think I am at all. Everyone seems to have VERY strong black and white, yes and no opinions about autism and it’s dumb. Doctors can be wrong. Some parents have their kids diagnosed w autism so they can cover up the fact that they’re abusive and play the hero. I think that’s what my mom did and if you disagree, fuck off because my experience is valid.
So I don’t know about me personally, I’m going to say I think I have social problems because of my disgusting, extremely traumatic childhood. Yeah I have a lot of weird hobbies I GUESS, but that’s only cause I spend all my time alone. Which, admittedly, is really unhealthy.
Also want to add that I think saying autism is always biological is stupid and dangerous. Sure, the refrigerator mother theory was “debunked” but let’s be honest.. society acts like mothers are saints no matter what, despite the fact that bringing a child into this fucked up hellscape of a world is inherently wrong in the first place.And before you get in your feelings remember it’s my opinion and Idgaf.
Thank you so much for this article! The neurodivergent movement definitely has a “whiteness” problem. I see this most clearly in who gets the most resources for aid and accomodation. My story is similar to yours- I was diagnosed at 30 years old. I also had delayed and limited speech, lack of facial expressions or interest in playing with others and repetitive movements as a child. My parents wrote most of it off because I figured out how to mask very early. They did take me to speech therapy at least.
I have only told two people in my life that I’m autistic because of, well, what your article describes lol. The saying goes “if you’ve met one person with autism, you’ve met one person with autism.” My sister also has autism and we’ve struggled so much as a result but in different ways. I’ve always loved being autistic but I drowned that love in shame and fear for decades. I’ve accepted myself and honestly I don’t want to tell many people. I don’t owe neurotypicals anything- not masking, not an explanation.