Simone Brown

Tag: autism

  • You’re not “neurospicy” Jessica, you’re disabled.

    You’re not “neurospicy” Jessica, you’re disabled.

    I’m writing to a non-existent Autistic woman named Jessica. I came across her writing piece today describing the experience of being a late-diagnosed Autistic woman. I am always looking for a deeper connection to the label I feel defined by, so, of course, I was elated. Almost immediately, though, I read the catchline: “for my neurospicy girls!”

    Gag me.

    I know Jessica meant no harm, just like everyone else who uses the term “neurospicy.” She probably thinks she’s raising awareness or lightening the mood, but she’s just making my eyes roll. I don’t enjoy sharing my label with people who use terms like “neurospicy.” I just don’t. It’s not funny to be Autistic, and my brain isn’t “spicy;” I’m disabled.

    “Whoa whoa! Why so serious?” You say, “disabled is a strong word.” Well, let’s look at that a little closer.

    There are two models to consider when defining a disability. The traditional medical model defines disability as some impairment that prevents someone from fully engaging in society. The social model of disability, in contrast, defines disability as differences that, because of society’s foundational prejudices, prevent someone from fully engaging in traditional daily life. I personally fall somewhere in the middle; disability is something that fundamentally alters the way you interact with the world, but those interactions are further altered by the social structures in place.

    Autism is, therefore, a disability for me. It influences how I work, how I study, how I spend my time, how I take care of myself, how I make friends, and how I date. A lot of these adaptations are invisible to others, but that doesn’t make them any less real to me. However, that invisibility makes it harder for people to conceptualize my Autism as a disability. I don’t claim that label on behalf of anybody else who is Autistic, but I do encourage you to think critically about why Autism being a disability, in cases such as mine, is an uncomfortable conclusion. I find that a lot of people like to forget I’m Autistic until it’s convenient for them or their needs. Would you rather I only embrace the “easy” parts of being Autistic? Would you like to have me as an inspiration, as a wallflower, as a mirrorball, as an advocate, and forget the rest of me? No. I have carved space with my bare hands, and I will not apologize for the dirt under my nails.

    Now that that’s out of the way, let’s address Jessica’s TikTok-ification of Autism.

    It’s weirdly humiliating. Autism has become a new punch line that strikes me square in the chest each time. An acquaintance uses Autistic as an adjective for someone who is “a little weird,” and all my friends turn to me, like they’re waiting to see how they should react, like the weight of Autism representation rests squarely on my shoulders. If I protest, if I try to explain, my words are minuscule in comparison to the number of memes they have seen that contradict me. It’s partly my fault. When someone says something hurtful unintentionally, I try to brush it off and move on. I like to give the benefit of the doubt that they are parroting the things they have heard before. I don’t stand up for myself nearly as often as I should. Instead, I pretend I don’t hear while my heart breaks inside. It’s also partly a broader problem that is a modern continuation of ableism; completely out of my hands and entirely too complex to unravel in less than a dissertation.

    Usually, I find the assimilation of online language into daily conversation to be a fascinating result of the fluidity of language and the strength of internet culture. We are amazing, adaptable creatures constantly seeking new ways to identify with each other, and language is a perfect tool to do so. In this case, though, the language being used to describe Autism is actively harmful not only to me but also to the whole community.

    There are a couple of reasons I hate these internet terms slung around to describe Autism.

    It promotes the stigma surrounding Autism and Autistic experiences by making people uncomfortable using real terms and discussing real elements of Autism.

    The more people use words like “neurospicy,” the less people are comfortable with the word Autism itself. The less comfortable people are with the word Autism, the less they’re willing to interact with Autism and, therefore, Autistic people. This cycle leads to disinterest at best, disgust at worst, and so the stigma against Autism grows.

    When I hear the word “neurospicy,” the first thing I think of is the overwhelming distress of a meltdown. When I meltdown, I lose control of my ability to speak, I cry uncontrollably, and I hyperventilate. Before I learned how to redirect my emotions, I used to hit myself (and sometimes I still want to) when I got overwhelmed. I have been in therapy since I was 9 years old and medicated since I was 16 years old to address my emotional regulation difficulties. That’s not “spicy,” that’s painful and real. Being afraid to talk about the ugly truths of Autism can only be stigmatizing.

    It reduces the reality of my diagnosis, my identity, and my lived experiences to a childish trend.

    Oftentimes, when people are using terms like “neurospicy,” they are, purposefully or inadvertently, presenting their audience with a version of Autism that is childish and simplistic. When something becomes trendy, it loses a lot of credibility. Even more so when that trend actively competes with the medical and social realities of a diagnosis. People have begun to treat the diagnosis of Autism as something you can opt into, meaning it should be just as easy, in their eyes, to opt out. People who don’t fit the social mould are seen as making a conscious choice to overstay their welcome and are treated as such.

    My experience being Autistic is unique. Many elements of my life shock non-Autistic people who are accustomed to the narrow definition presented on social media. I’m not alone; every Autistic person lives a life that stretches beyond what non-Autistic people think they can be. Stereotypes are claustrophobic, and pushing the boundaries of those stereotypes is exhausting. Instead of devoting energy to improving my quality of life, that same energy now flows into convincing people that I really am Autistic, despite what stereotypes would have you believe. “Neurospicy” is acceptable because stereotypes thrive, and stereotypes are reinforced because we promote them with terms like neurospicy. What a vicious cycle to contribute to.

    Look, I’m not the language police. You want to keep making videos and blog posts about “being a neurospicy person?” Fine. Do what you think raises awareness or lightens the mood or whatever. I’m also not saying there isn’t a space for comedy in being Autistic. I have heard some downright hilarious jokes made by and about Autistic people, but the funniest ones never punch down. What is there to laugh about in the fact that your audience is uncomfortable with the word Autistic?

    I’m very privileged to be a well-spoken, low-support needs Autistic person. I would be remiss if I didn’t use that privilege to tell you that your constant couching of Autism is only hurting how (not) seriously we are taken by non-Autistic people. The words we choose matter, especially when we have the weight of Autistic people who cannot as easily self-advocate on our shoulders.

    For the love of God, just say Autistic Jessica. You’d have no problem doing it as a punchline anyway.

  • What Could Be More Selfish Than That?

    What Could Be More Selfish Than That?

    “Selfish”: (of a person, action, or motive) lacking consideration for other people.

    Autistic people rarely get to be selfish.

    The existence of “accommodations” might lead you to believe that, actually, Autistic people are frequently selfish. After all, they are the ones asking the non-Autistic population to adjust their behaviours, right? However, consider how much and how often those same Autistic people are really the ones accommodating others. We are constantly masking ourselves to be more palatable. It’s not even asked of us; it’s assumed. We are also the ones living with the consequences of being unselfish, having a meltdown in the bathroom stall as quietly as possible before returning to the group.

    I can’t remember the last time I, as an Autistic person, unapologetically took up as much space as I needed. What I can remember is the last time I disassociated in public to cope with the overwhelming environment my friends chose as our hangout spot. We don’t consider driving a friend to the airport or bringing a coworker coffee a burden; we consider it a part of building a thriving community. So why is it that when suddenly it’s an Autistic person asking for something, it is an “accommodation?”

    Let’s look at an example in the form of “disclosing” autism. When I introduce myself to someone new, it usually comes up (as naturally as I can manage) that I’m Autistic. That’s because it is socially MY responsibility to inform others about my disability and MY responsibility to seek out accommodations. Consider that no one has to disclose they don’t like cold weather; they simply do what is best for themselves (in this case, wearing a jacket), and everyone accepts it. Know someone long enough and they don’t think twice about offering to let you borrow a pair of mittens when it snows. Someone with a peanut allergy isn’t asking for accommodations by choosing the nut-free meal at a restaurant; they’re just prioritizing their health and well-being.

    Disclosure is risky for Autistic people because of this lens of “selfishness” through which we view “accommodations.” If you really believe that Autistic people are protected in non-Autistic communities, then you don’t speak with enough Autistic people. The discrimination associated with Autism will compound when I disclose, all for the meagre reward of consideration.

    Autistic advocacy is another example. Too often, non-Autistic people will stretch the boundaries of what little advocacy space Autism receives to fit themselves in. In doing so, they are stepping on the toes of actual Autistic people. Caregivers are the ones expected to speak up because no one cares when the actual Autistic person wants or needs something. This means that, no matter how well-intentioned, caregivers default to the voice that advocates rather than the ear that listens. Not only is this infantilizing and even humiliating, but it also reinforces the abnormality of Autistic people speaking up and asking for things themselves.

    Every once in a while, someone will speak about “ways you can support your Autistic father, mother, child, partner, friend,” and everyone will applaud them for their stellar perspective on how ANOTHER person’s lived experience might affect them. Accommodations are always framed as the burden that one must bear in loving an Autistic person. Rather than tell them to kick rocks, Autistic people have to be graceful and delicate in their response. “Love this! Thank you for speaking up :)” We say as we watch the algorithm send their blog post into the spotlight while our own words stay stuck in the shadows. What becomes of our raw, human experiences is a watered-down, motivational anecdote about how we’re all in this together. It’s such a rare opportunity that we don’t want to scare away the few people trying to help. Still, it’s hard not to feel frustrated when I am once again smiling and nodding along to a presentation on neurodiversity that ends with the astounding revelation that Autistic people are human and therefore have human needs.

    A stereotype of Autism is that we lack empathy. I can’t speak for every Autistic person, but at least for myself, I sometimes feel I have too much empathy. I am caught up in how my existence, in its most natural form, might be inconveniencing or uncomfortable for others. Am I stimming too loudly? Am I moving in a distracting way? Do I seem rude if I put on my headphones? Should I laugh at the joke even if I don’t get it? I care more about how other people feel than I do about myself, and that often gets me into sticky situations. There are consequences to being selfless for Autistic people. Masking is exhausting, advocating is divisive, and disclosing can be dangerous. I say yes to things I want to say no to, and I don’t implement lifestyle changes that would genuinely relax and comfort me. It’s not that I lack empathy; it’s that I have a different style of communication, and therefore, my empathy is expressed differently.

    Non-Autistic people are privileged and, oftentimes, ignorant of that privilege. While I am counting the seconds of eye contact and thinking about where I’ve placed my hands in relation to their hands, they are solely invested in the act of building community on their terms. The majority of non-Autistic people do not adapt their behaviours or their environment to fit the needs of Autistic conversation partners, because they never consider that those needs might differ from their own. What can be more selfish than that?

    I think Autistic people should be as selfish as they want to be. They live in a world that isn’t built for them (if you subscribe to the social model of disability), and their attempts to self-advocate, even in minute ways, get labelled as “demands” or “adaptations” rather than as a natural variety in behaviour that exists among humans. Selfishness is a part of building community; it gives us the means to take care of ourselves. Without being selfish, how could we express and differentiate ourselves? How would we know who we love and who we tolerate? Everyone, not just Autistic people, deserves consideration from time to time. It is what keeps us safe, happy, and comfortable. And everyone, including Autistic people, deserves that for consideration not to be a big deal.