Who knows what I am?

I took something to heart lately. A full diagnostic test for autism may cost over $1,000 for me. Found this out because I went to therapy for some other issues. It’s been only one session and she hasn’t gotten to know me yet. She doesn’t want me to refer to my issues as autistic issues while in her office until I get the full test. It’s devastating.

I struggled with a lot of things about this. For one thing, I wondered if I were even still allow to write in my blog since part of it is advertised as “my autistic experience.” I felt like I duped the few readers I have. And I believe that as a writer, the worst thing you can do is be dishonest.

I’ve been “unofficially” diagnosed by most of the mental health practitioners I’ve seen. I’ve been officially tested for ADHD and the assessor believes I’m autistic instead of an ADHDer. I’ve gone to a social skills group for autistic people at my university and it’s helped tremendously. Other therapists have treated my issues as autism, with results that have helped me. I want to continue receiving the help that has changed my life. I’m afraid that if I’m not diagnosed with autism, I’d be unworthy of help. Because here’s what comes with “not autistic”: Assumptions that my issues aren’t big enough to worry about. I know it’s a fear of mine, and therefore probably an unsound judgment, but I’m so used to being brushed over that it’s hard to imagine anything else.

More than anything, I want answers. I wished I knew them right now. My two biggest struggles have been low empathy and executive dysfunction. These issues have preceded my poor mental health and trauma. The autistic community has given me an abundance of resources and stories from like-minded people. The neurotypicals in my life don’t understand how this is affecting me because they don’t have these issues on such a wide scale. They have this believe that diagnosis or not, the person’s individuality matters more. But they’ve never experienced having such developmental issues. It’s easy to say something like that from the outside. Because individuality isn’t accepted in people like me. It’s threatened with corrections and punishments.

I don’t know what’s going to become of me if I get an assessment and the assessor doesn’t think I’m autistic. I’m not prepared to hear something like that. I think I’d lose it.

Social justice and proximity to the dominant culture

Whenever I read theory discussing bigotry, it tends to have this explaining-to-the-privileged thing going on. I know it plays an important role in consciousness raising, but it does marginalized groups a disservice to only discuss our issues in proximity to the privileged. Here’s what I mean: A lot of Black (mainly African American) writers talk about their own lives in comparison to white people’s lives in the United States. They outline integrationist survival strategies and the psychological effects on racism. But I find that we have issues that’d best be discussed by centering Black Americans’ internal world. We have a rich, complicated relationship with our culture and don’t talk about it as much as we could be doing. We take solace in our culture so I know it feels counterproductive to pull it up by the roots and see what’s wrong with it, but it’s necessary that we focus on us. To truly crack down on racial oppression, we need to examine what’s going on inside and out. We need to look at our family structures, our cultural values, and underlying biases against ourselves.

Here’s another example: The autistic community discusses what it’s like to not be neurotypical, but it’s centered around the disconnect between neurotypical and autistic life. My autism, just like my Blackness, is very important to me. But I’d exhaust myself if I constantly compared my standing to others’. There’s a way to discuss autism without centering neurotypicals’ reactions to us. I know it’s out of a desire to show people exactly what we go through, but the truth is that people can’t always “get it.” Some experiences are uniquely ours, and that’s part of why we have our own communities in the first place.

Final example: Queerness. I don’t care what straight people have going on. I really don’t—There’s no reason for me to explain myself to them. I know other girls just like boys and how alienating it is. I want to hear more about woman-loving women without comparing it to the hetero world’s tendency to slap men and women together. Sapphicism, like the other things I’ve discussed, has its own experiences that don’t need the dominant culture as a reference point.

My point is that parts of my identity don’t need to continually be defined by what they aren’t. Not white, not neurotypical, not straight—That’s vague as fuck. A whole lot of people. We have our commonalities, but inclusion as we know it has this tendency to lump everyone together as a general “other,” as if that’s not a tool the oppressor uses.  It’s why a lot of Black activists criticize acronyms like “POC” (people of color). The othering of marginalized people doesn’t actually make us easier to digest. It simply re-establishes things we’ve been saying since the beginning of time. And it doesn’t give us a framework for progress. I don’t want to be stuck talking about a imprecise concept of justice forever. I refuse to be patient and explain things to people who’d rather me not exist. It’s not worth it.

I figure it’s a part of a bigger issue with how marginalized activists are socialized—integration tends to be a live-saving strategy if institutions continually have a problem with core parts of you. I wanna distance marginalized people from employing these strategies in our activism because accommodating others isn’t worth it. We need to center ourselves because our lives are at stake.

The autistic community doesn’t hold itself accountable.

I don’t just mean drama. Some of y’all think autistic people’s oppression is a reason to not work on yourselves as individuals.

I’m talking denial of mental illness traits, unhealthy response patterns, denying others’ experiences, controlling behavior—all the good shit. We don’t get to act a fool because of our autism. We’re hurting each other the most with our unwillingness to look inward. I’m gonna outline some common problems I’ve seen autistic people refuse to solve in themselves.

• Denying others’ perspectives because you can’t personally see it that way. Look, I suck at empathy. I know that. But I also know the world doesn’t revolve around me. I don’t need to personally resonate with something to acknowledge that there’s someone out there different from me. If that’s not naturally you, then you’re not inherently bad. But what you should work on asking questions and you should hesitate to make assumptions about others. Because your assumptions tend to be rooted in your perspective. This makes them unhelpful when it comes to another person.
• Acting like something’s bullshit because it doesn’t make sense to you personally. This one’s similar to the one before it, but I see it so often that it needed its own bullet. There’s some shit in this world you’ll never understand. And that’s fine. Nothing on this Earth was put there specifically for you to verify it logically. If you angst about being misunderstood but then do this, then you’re a pretty big hypocrite.
• Wanting others to meet you halfway without you doing the same. Look, if you want people to respect you, you’ve gotta hold up your end of the deal. It’s unfair otherwise.
• Not communicating. Lord, I see so many people in the autistic community brag about how blunt they are but then disappear on their loved ones or do something that harms them, but then say nothing. What good is taking pride in that bluntness doing you if you only use it to make others feel stupid? Put your money where your mouth is and start speaking up, for God’s sake. When you make a choice to withhold communication, don’t be surprised when you have no one to lean on. No, I don’t mean this in the sense of simply not wanting to talk to your friends every day, being busy, or struggling somehow. I mean it when you evade pleas to communicate just because you don’t feel like it.
• Not learning healthy coping skills. This is a big one. No, you don’t get to lash out. No, you don’t get to cross boundaries. No, you don’t get to be overly dependent on a person. No, you don’t get to bully. Like I said before, I don’t mean you suck if you struggle. Life kicks too many asses for me to say that. But what I am saying is that your well-being is your responsibility, first and foremost. Nothing can save or fix you.
• Pressuring others. Sometimes it’s misplaced effort to accommodate one’s self or make sure a person does what’s in their best interest, but it doesn’t work. When you exert power over a person, you’re denying their agency. This means you’re not valuing the other person the way you should. If you care so much, then you shouldn’t push so hard. Your high standards will never be the most important thing in someone else’s like. If you’re strong arming someone into acting a certain way, handholding, lecturing, anything like that… Cut it out. You’re wasting everyone’s time.

I meant this in the most concerned way possible. I see a lot of people say, “Autistic relationships are inherently more equitable because we’re nicer” and shit like that. Hell no. You’re either not looking deeply enough into it or you got lucky. Identifying with a community or subculture doesn’t make it less susceptible to the bad parts of the dominant society. When you see solace in something uncritically, you’re making socialization harder in the long run. Really, all I want is for people to be good to each other.

“Dispelling stereotypes” isn’t helpful.

It oversaturates discourse and throws your community under the bus.

I see this shit in several activism / advocacy-based communities. It’s based in respectability and a belief that oppressive institutions should be reformed instead of destroyed. As usual, this piece is gonna be intersectional. Though I see the emphasis on stereotype-dispelling in just about any community purportedly for my demographics, the autistic community’s especially embarrassing.

The mainstream autistic community online has it so bad with the stereotype-dispelling for a few reasons: they believe in getting a seat at the table, they don’t see a world outside the one they navigate, and they’re uninterested in challenging those first two things. It’s troubling because a lot of the biggest Autfluencers write short posts about intersectionality, but turn around and only platform things that serve their own interests. But then they pat themselves on the back for leading more people to get diagnosed. However, the vast majority of the people they’ve been helping were already predisposed to receiving a second look over other groups. At that point, I just want to ask them why they don’t acknowledge this. When you’re a big account, lots of people listen to you. You have to take some responsibility for how you influence the narratives in our community. But that’d lessen their credibility when they position themselves as marginalized, I guess. I mean, yeah, autism is a disability. Yeah, there are a lot of LGBTQ+, a lot of women, a lot of physically disabled people. But it’s like they forget or ignore that they’re white and have more money than the people who need liberation most.

Newsflash: a post saying “listen to black/queer/BIPOC/etc. creators <3” isn’t enough. Platform us. No, a retweet isn’t enough. We need jobs, money, connections. Make us mainstays of your organizations if you’re so invested in reform over revolution. I’m not content with being a guest blogger that 4 people go look at. And by the way, none of the virtue-signaling posts mention poor/low income people. I think that’s the key to the issue. If we address class beyond the small community that alludes to the inadequacy of disability checks, we can no longer present the “non-stereotypical” as a monolithic identity-based group in need of more special attention than everyone else.

But that’s what’s going on right now. It’s easy for Autfluencers to conceptualize and market a “non-stereotypical” autistic person because all they have to do is say the stereotypes cater to cishet white men. Though it’s true, Autfluencers use that fact to present themselves as revolutionaries for platforming more white people with money. They’ll go, “But they’re queer,” “But they’re disabled,” or “But they’re a woman,” as if society doesn’t see race and class alongside these things. The society we’re in will always see race and class. Disability’s negotiable if you’re white and have a certain status. This doesn’t erase the oppression they’ve experienced, but when you only platform these people, you water down the effects oppression has on most of us. So the perspective shift to “autistic women” is almost useless for the long-term because it’s a model based on middle to upper-class, Western, cis white women.

So when we talk about “autism in women,” it’s often about that specific demographic of women. Sure, you have some people who relate to that profile, but they often have something in common with that demographic. For example, you can be queer and black, but not poor so you can relate to the lack of class-based oppression and thus have experiences that align with your class group. The autistic community pays a lot of lip service to the ridiculousness of paying to get testing and other resources, but only when it’s those issues in particular. There’s this expectation to have a certain relationship with one’s special interests, with what you can buy to help yourself, and other things like how “smart” you were considered growing up. These all have a heavy bearing on race, gender (and how you present as / perform that gender), biological sex, and class.

When we talk about autism in particular races, it’s non-stereotypical nonwhites that get platformed and disrespect both autistic people and the people of their race by insisting that being “the stereotype” is bad. Stereotypes are bad because they’re used to abused us. Going “I’m not like the other [people part of my group]” because of your insistence on being a Good Whatever-You-Are overrides your pursuit of your people’s liberation isn’t helping anyone but people like yourself. Stereotypes are a problem because they’re used to demean you, not because the mischaracterize you personally. Stop and think. Who’s an “angry black woman” hurting if she’s right about the shit she’s mad at? She hurting your feelings? I have no problem with saying that stereotype has been weaponized against you, but it’s a problem when you start acting like, “I’m so pure and docile, how could I ever be so like those other blacks?” The non-stereotypical nonwhites’ resentment of the “stereotypical” black people tends to perpetuate some pretty racist ideas. Why is it a bigger insult to be told you “talk white” then to be systemically oppressed and told your speech is primitive because you use AAVE? You’re fundamentally told that your way of communicating is lesser in the second option. It’s sad as fuck that the non-stereotypical black people platformed can recognize this in autism but not in “the stereotype” of their race.

It’s also important to acknowledge that when stereotypes are dismissed as personal insults and not tools of oppression, we make it harder for the “stereotypical” to get help. Nonspeaking autistics, autistics with self-injurious behavior, and mentally disabled autistics are all routinely considered myths because it’s convenient. For all of us to be liberated, our society needs to be a livable place for these people. Autfluencers do so little to platform their experiences. It troubles me that it took abusive practices at the Judge Rotenberg center for autfluencers to step up even a little. They talk about normalizing the autistic experience but only showcase the trauma of certain forms of it. I get that it’s very important to show autistic trauma, but when we don’t show autistic joy or steps towards liberation, we have a 1-dimensional view of autistic trauma.

When we only have in-depth narratives on one particular “type” of autism to combat extensive shallow narratives about another, we’re not helping the autistic community. It’s unproductive to write about how many undiagnosed people there are with the perspective that all of these people are like yourself. It’s frightening how little of the autistic experience is discussed as the current discourse is framed as an unambiguous step forward for every autistic person everywhere.

Here’s what y’all can do moving forward: Actually look into the histories of the demographics you try to platform. It’s not enough to “listen to” a black person that has the same demographics as yourself aside from race. Think about what you’re missing in your activism. Think about why this stuff is missing. Stop ignoring class. Stop ignoring culture. Stop trying to work with a system intrinsically against us.

We’ve seen with the DSM-5-tr that getting more people diagnosed isn’t a fundamental solution to autistic problems. The DSM needs exclusivity to effectively apply a narrow problem-solution model to disability. Attacking confused people for “watering down neurodiversity” on TikTok is misidentifying the problem. They’re ignorant and they suck but without institutions that make life harder for disabled people, abled people wouldn’t be so good at trivializing us. Redirect your anger. Systems, not individuals. Focusing on the individual level for too long gets people at each other’s throats in a way that completely ignores the root of the problem. We don’t need to interpersonalize centuries of harm towards entire societies.

If you’re so scared of conflict, stop making systemic issues interpersonal. Because that’s why you’re in comment sections fighting with people who don’t want to hear you. Destroy your personal will to power, please.

I’m over “autistic man seeks good woman” plots.

We gotta stop pitying men for not being what patriarchy wants ’em to be. The incel has been talked about to death, but people don’t realize how many brothers he has.

If you’ve watched a show with an autistic or autistic-coded man in it, you know there’s always a plot where he gets a girlfriend because that’s what “normal” men do. And it’s always a big deal. And the audience eats that shit up. Just to name a few shows with this in it: Atypical, Big Bang Theory, The Good Doctor, Community. Community’s version was supposed to be the most progressive because Abed was, in fact, liked by women. He just wasn’t looking for a girlfriend. But that shouldn’t be the point at all. Who gives a damn if women do or don’t like him? Women don’t owe their attraction to any man for any reason. We’re not consolation prizes or rehabilitation centers. This anxiety that autistic men won’t live “normal lives” if women aren’t fucking them is pretty damn patriarchal.

In media with autistic-coded or awkward women, people aren’t worried that she’s not gonna have a boyfriend or that guys don’t like her. They jump right into the dating stuff and show her being awkward. Or they act like she’s repulsive and don’t go further with romance. It’s not treated like a crisis when people aren’t fucking the awkward girl. Why isn’t it the same for the guys?

Because men are socialized to expect women’s affection. Women are socialized to hope for men’s approval. This creates an imbalance of social power. And when a man can’t perform socially, it throws things off-balance. It’s harder to figure out who’s supposed to do what in this dynamic. The dude’s weird so women are cut some slack when they aren’t as eager for his approval. Then there’s a push-pull where his friends are like, “But he’s a great guy if you ignore his inability to take care of himself. He’s cool!” And the object of affection gives in. Her heart softens into pity-putty. It’s a safe relationship because he’s not like other guys and she can make him normal-ish. It’s awww-fodder if you’re watching uncritically.

Though when you start to question things, it feels dumb at best. What’s with the fantasy of building up patriarchal men from scratch? The same characters will complain about neurotypicals that womanize or objectify, but feel proud with the nerdy guy does it. Do we feel like we’ve helped somebody? Do we believe Autistic Logic Powers will prevail over patriarchy (yes, some autistics are that far up their own asses)?

Bottom line: We’re not helping anybody with these plotlines because they’re upholding the status quo that enables so much bullshit in both neurotypical and neurodivergent communities. The mainstream autistic community is so concerned with being socially successful that they’re not looking at what social success really is in the first place. I see so many autistics online talk about how stupid social rules are, then turn around and praise stuff like this trope. And I don’t get it. I’m begging people to look outside their own feelings for a second and realize we’ve got bigger fish to fry than their insecurities. Autistic liberation can’t come if we’re putting all of our energy into accepting standards we should be rejecting. 

Autistic internet discourse has a gender (and race) problem.

If you’re unfamiliar with autism stats, it’s worth knowing that AMAB (assigned male at birth) people are more likely to get diagnosed. Most of those people are cisgender dudes. There are an array of theories trying to explain why. The earliest ones misattribute the discrepancy to brain structure. One of those is known as the extreme male brain theory. It’s exactly what it sounds like—autism is a profound manifestation of what western society sees as masculine. It’s ridiculous because that conception of gendered traits is narrow and stems from cultural expectations.

What’s wild to me is how this theory is slammed as reductive by mainstream autistic self-advocates when they perpetuate parts of it themselves. They don’t realize it, but they need to because it’s making things harder for the community at large. The biggest way the Autfluencers are doing it: masking discourse. Masking, also called camouflaging, is when a person engages in behaviors that obscure their disability to navigate the world. It’s done because the world’s not set up for us and shuts a good bit of us out by design. So masking is one way people carve their own path. Mainstream autistic internet conversations have identified typical masking behaviors as people-pleasing, sitting down, and shutting up. Being emotional handmaidens for NT people. Never knowing your own needs or emotions. The idea that we’re just softer because we’re AFAB. Here’s what it’s got to do with sex: Autfluencers have determined that AFAB people mask more by nature and that’s the reason why we’re missed for diagnosis. They’re so close to getting it. It’s a piece of the puzzle. But what we’re missing is that AFAB people fundamentally aren’t considered for diagnosis. You know, because autism gets called a “male disorder.” My brother masks the way Autfluencers define it. I don’t. But he was diagnosed at 4. I was at 16. Instead of “autistic,” I was called oversensitive, rude, and disrespectful. Too angry.

That brings me to another piece of it: race and culture. White girl people-pleasing looks different from the black girl kind. African American culture tends to value coming out and saying shit unless the shit you gotta say makes you look vulnerable. So we’ve got several realms we’d have to mask in: white neurotypical society, white neurodivergent communities, and black neurotypical communities. And you think we’d get through all that with the emotionally-centered never-say-no kind of behavior? I’m not knocking that kind of masking; it takes a huge toll and it’s genuinely hard work. Commendable. But because of that difference: our people-pleasing may look like we’re just quiet (in the school shooter way, not the “pleasure to have in class” way). It may look like we’re too focused on getting shit done. Like we’re not friendly but we’re real practical. Which are critiques neurotypical black women get slammed with, too. Even if their real personality is the too-nice type, they’re going to be accused of being too aggressive. Or too unfeminine. And too whatever-else that misogynoir deems a problem.

Going further, black people with even “mild” stereotypical traits will, again, be called shit like unruly and retarded. We’re called problems. Our anxiety reads like aggression even if we’re shaking and crying. We don’t get that “maybe they’re autistic” benefit of the doubt. We just need the police called on us so we can get locked up. And on top of that, if you’re a black woman, you may not ever get diagnosed because you’ve got these options: jail, the psych ward (whether you need it or not), or perpetual struggle. And you don’t know why. You go through life feeling like there’s just something wrong with you. Like God (if you even still believe) messed up when he made you. You look at your blackness and your womanhood trying to put it all together and you don’t know what you’re missing. Because autism’s something awkward cis white men and sometimes women have.

What’s masking discourse doing for the wider neurodivergent community? I acknowledge that it got a group of people diagnosed that wouldn’t have been previously. But it was mostly cis white women. And if not cis white women, it’s people who may read as such. They’re writing about cis white gender expectations and unintentionally assume it’s the same for everybody who isn’t a cis white man. I’m asking again, what’s it doing? The way the world’s set up, diagnosis or at least identification of autism can save lives. That’s why diagnosis is a thing. To help people navigate their lives. But the way this system’s set up, only so many Twitter threads about masking to help us. We need to shift our focus. We need to talk to nonwhite autistic people more. We need to talk about the intersections of our culture and autism. Because there’s a whole lot we need to talk about there. Cultural expectations and racial stereotypes “mask” autism on a fundamental level. It’s literally going, “There’s no such thing as an autistic black person / woman.” We can unmask all we want and we won’t be called autistic.

I recognize that there’s a shit-ton of things at play here: Twitter character limits, unprocessed trauma, and conflicting community goals. But we need to get it together. There’s only so much writing about your personal experiences to do to help autistic people. It’s obscuring the conversations nonwhite autistic people need to find and have. Not cool.

Closing notes: I rambled. There’s definitely some inconsistencies but I needed to get it out there as soon as possible because my goal writing this is to start a conversation that centers nonwhite autistic people. I couldn’t speak to other nonwhites’ experiences because I’m African American. I have a different experience from black people from other countries. So I invite every nonwhite ND person to add their specific cultural commentary to what I’m saying here. Especially AFABs so people can stop seeing our underdiagnosis as a thing intrinsic to us as a group. I also want to invite non-cis people to the conversation about masking. Because I’ve seen people say that it erases nonbinary and trans people who mask because of the discourse centering cis womanhood. And I of course invite cis men who mask to participate in this discussion. I’m coming to the conclusion that masking just shouldn’t be gendered so heavily. Because it’s also racialized and it’s constructed in middle class ideas of morality and politeness.

P.S. If you feel called out by this article, that’s a good thing. It means you’re self-aware enough to do better.