# Chapter 6 - Building an Autistic Life * [CHAPTER 6](#chapter-6) * [Building an Autistic Life](#building-an-autistic-life) * [Divergent Design](#divergent-design) * [Divergent Design Questions](#divergent-design-questions) * [Reimagine Success and Time](#reimagine-success-and-time) * [Do Your Own Thing, Your Own Way](#do-your-own-thing-your-own-way) * [Be Radically Visible](#be-radically-visible) * [Radical Autism Visibility: Dressing to Unmask](#radical-autism-visibility-dressing-to-unmask) * [Everyday Unmasking: Daily Challenges for Being Radically Visible](#everyday-unmasking-daily-challenges-for-being-radically-visible) --- # CHAPTER 6 ## Building an Autistic Life “Over the last year I’ve lost over 10,000 followers. And I think that’s because I’ve gone from being an aspirational version of myself, and now I’m just doing what I want.” Moorea Seal is a Seattle-based author and entrepreneur, and for many years she was a digital curator and influencer as well. She’s best known as the author of the bestselling 52 Lists journal series, which provides a year’s worth of weekly writing prompts around a specific topic or theme. There’s 52 Lists for Happiness, 52 Lists for Bravery, and 52 Lists for Togetherness; there are 52 Lists branded planners, postcards, and to-do lists. Each book is beautifully designed, both soothing and stimulating to look at, with graphics set against backdrops of earth tones and photos of plants. The prompts are broadly useful, but also reflect the mental health and self-exploration journeys Moorea has been on over the years. The store Moorea used to own in Seattle was much the same: a carefully arranged, inviting space filled with stylish dresses and jewelry, bags and heels, and ball cacti planted in glossy white, geometric dishes. Moorea first became internet-famous on Pinterest because she had such a preternatural talent for pulling visual elements together. Her eye and taste also led to success on Instagram. Moorea’s digital brand became so recognizable that fans began seeking out her store, which she named after herself so it would have recognizable branding. Over the course of a few years, Moorea became a massively successful author, small business owner, and influencer. She went to conferences and had business meetings with large brands. She signed deals with Gap and Nordstrom, and was profiled by outlets like Amy Poehler’s Smart Girls. She navigated all this as an undiagnosed Autistic person, wearing a mask of sleek, feminine beauty. The larger her brand became, the more confining it felt. “I’ve had so much pressure to be the face, to wear certain things, to do a performance of Moorea,” she tells me. “I want to be Moorea. I want to be me. I don’t want to have to put this on all the time.” At the height of her success, Moorea was in an unfulfilling marriage and beginning to question her sexual orientation. The constant grind of running a business and representing her company was wearing her down. She started having panic attacks. Her brain, desperate to protect her from the overload she was experiencing, would shut down during meetings and high-stress situations. “I would be in meetings and I’d have, you know, business partners yelling at me like, Moorea, pay attention. Do this thing, you’re late on this. I would just start bawling crying, and then they would say I was being emotionally manipulative. And it was just that I had no words left.” Moorea had always felt a tension between her internally “weird” self and the attractive, put-together woman people expected her to be. She was an outspoken ally to LGBTQ people, but didn’t acknowledge her own queerness. Professionally, people valued her mind, and the unique images she could create, but they didn’t want her to push the envelope by posting about her political views. She followed the rules, tried to strike the right balance between being herself and being an influencer, but it left her trapped in a horribly inauthentic, exhausting position. So, Moorea began to let things go. She closed her store and pared down her partnerships to just a few key collaborators. She and her husband separated, and she came out as queer. She started boxing, and getting more muscular, and began dressing in baggy, masculine clothing more often. On Instagram her follower count dropped. She started posting about Black Lives Matter, her struggles with depression, and her queerness, and more followers disappeared. Many of the white, straight women who loved Moorea’s old brand were put off by the real her. The more Moorea embraced her true self, the more she lost. But it didn’t exactly feel like a loss. She had gained a greater understanding of who she really was. Several months into the pandemic, a friend of Moorea’s suggested she get assessed for Autism. She received a diagnosis very quickly thereafter. “I was just happy in that moment,” she tells me. “I was just, ahhh. That makes sense.” Moorea’s story is a bit different from what we’ve heard so far. She had begun unmasking herself months before figuring out where that mask had come from in the first place. The dissonance in Moorea’s life was so stark she didn’t need an Autism diagnosis to let her know things were unsustainable and needed to change. Being a queer, androgynous influencer in a hyperfeminine, conformist industry was obviously untenable. As soon as she acknowledged this, and began to walk away from it, all Moorea’s hidden facets began to shine. And when she did discover that she was Autistic, Moorea wasn’t shocked or embarrassed. She’d always had Autistic friends, as well as friends with intellectual disabilities, so in many ways the revelation felt like coming home. By the time Moorea came out as Autistic on her Instagram, anyone who was going to be alienated by her had pretty much already left. “I’m gonna keep being brutally open about myself,” she says. “People are going to respond however they choose.” Moorea has gone through a lot of change in the past few years, and at times it’s left her emotionally reeling. But she’s approached these changes with radical acceptance and trust in herself. She knows that being Autistic has been a positive force in her life, and listening to herself has allowed her to zero in on which kinds of life are fulfilling and sustainable for her. I think that ultimately, that’s what every masked Autistic should be shooting for. To trust and unconditionally accept ourselves enough that we can accept the rejections and losses that sometimes come by living as we really are. We can’t please everyone. Unmasking means we stop trying to be an appealing “brand.” Moorea had camouflaged and compensated for her Autism beautifully for many years. But she learned, at a certain point, that it was better to live on her own terms than it was to appeal to the masses. At the time I interviewed her, she was living in a guest house on her sister’s property, and working according to her own schedule. She found lots of time throughout the day to play with her sister’s toddler-aged kid, and to take restorative walks and baths. A few months later, she moved into a cheap, yet comfortable micro-studio apartment, and stripped down to the basics even further. She still does creative, curational work, but she’s learned to let a lot of things go. This life isn’t as fast-paced and achievement oriented as Moorea’s old life was. But it is more her. In this chapter, we’ll take a look at a few evidence-based ways that Autistic people can build our lives around our strengths, values, and needs. We’ll also hear from several Autistic coaches, activists, and mental health providers who have devised ways of accommodating neurodiverse bodies and minds, and learn a bit more about people like Moorea, who have stopped defaulting to neurotypical scripts about what a home, career, or life “should” look like. Recall that masking consists of both camouflage and compensation. It’s a complex system of behaviors, performances, and even life decisions. It follows then that unmasking Autism goes a lot further than just lowering our inhibitions. It means rethinking the entire shape of our lives. When we trust ourselves and get in touch with our values, everything from how we dress, to how we lay out our homes, to how we conceive of time itself may change. ### Divergent Design Marta Rose is an educator and Autistic peer counselor, and online she writes regularly as @divergent_design_studios. Some of her most groundbreaking work is around the concept of divergent design—the idea that the physical spaces we inhabit as Autistic people ought to prioritize our sensory health, and work with the actual patterns of our lives. “When designing an interior space,” Marta writes,[^6.1] “design for how you actually live, not how you aspire to live…your space must be designed to accommodate the reality of your life, without shame or judgement.” Before living by this principle (and coaching other Autistic people on it), Marta used to beat herself up for things like leaving her clothes in a pile on the floor at the end of the day. She put a hamper near her closet to make staying organized easier, but at the end of the day, she was always too exhausted to sort between the clothes that were clean enough to be put away and which ones needed a wash. She had a dining room table covered in junk and berated herself for never using it to actually have family meals. Her home design was aspirational, but not at all practical. “My new plan is to put some hooks on the wall right beside my bed, so I don’t have to take even one extra step to hang up clothes that aren’t dirty yet,” she explains. Dirty clothing can go in the hamper, or just be tossed on the floor and gathered up later. This approach keeps Marta’s room reasonably organized, but she doesn’t put stress on herself for not keeping things perfectly organized and clean. Mariah, a designer who recently discovered that she’s Autistic, says that redesigning her home and workspace has been a foundational part of her unmasking. “I am a designer by day, so I’ve learned a lot of ‘design rules,’ but I really broke a lot of them when considering my desk setup,” she says. “Working from home helps me be able to unmask in a lot of ways that many people don’t even see. But I’m unmasking to myself, and that feels extraordinarily liberating.” Mariah keeps sensory and self-care tools in a box near her desk, so she can reach for them and fidget whenever she needs. A massage roller sits beneath her desk, so she can stim with it using her feet. She wears industrial-strength noise-canceling headphones (the kind landscapers use) and keeps plastic toy wands filled with glitter within arm’s reach to fiddle with. Her desk layout doesn’t look like what she was taught a well-designed space “should” be. Living by her own rules has had a massive positive effect. She’s constantly making adjustments, finding new ways to make herself more comfortable. “Everything feels different, it really does impact everything. Like my body was masked!” she says. Now that her daily environment works with her body rather than against it, she feels physically and mentally free. Marta Rose writes that divergent design should honor the unique relationships Autistic people have to objects. Some of us are very stressed out by visual clutter, because it creates sensory “noise,” and that means home décor and staying organized can be very challenging for us. If anything new enters my apartment, I notice it instantly, and it bugs the hell out of me. Sometimes I throw necessary things away on impulse, because looking at them makes me so stressed. A university once sent me a huge recording kit in the mail, in preparation for a virtual event. It freaked me out so much I nearly returned the box to UPS and lied that it had gotten lost in the mail. That’s how badly I wanted it out of my house. I have had to work around this trigger; when I helped organize a trans clothing swap, for example, I asked a friend to hold on to all the clothing donations. I knew if I had a bunch of trash bags of clothing in my apartment, I might throw them away impulsively one evening. Experimental research shows that many Autistic people have trouble ignoring visual “noise,” to the degree it really disrupts our processing.[^6.2] Clutter can erode our focus, making it hard for us to think clearly or regulate our emotions. A study of Autistic schoolchildren found that many had trouble paying attention in classrooms where the walls were covered in distracting, bright posters, and the shelves were stuffed with books and toys.[^6.3] Most children’s spaces are very busy and bright, despite how negatively this impacts Autistic kids’ processing. It’s no wonder that Moorea Seal became known for her minimalistic, sleek aesthetic. Lots of neurodiverse people crave spare or even Spartan surroundings. It’s less to keep track of, less to clean every week, and less to pack up when it comes time to move. It’s also very on-trend: minimalistic design, capsule wardrobes, and throwing away items that cause clutter and fail to “spark joy” (à la Marie Kondo) have all become immensely popular in recent years because it is so visually soothing and practical.[^6.4] That said, not all Autistic people are well suited to minimalism. Marta Rose observes that objects carry a very strong significance for Autistic people, so tidying our living spaces up and throwing things away can be very difficult.[^6.5] Many of us identify with the items we love, and even feel a degree of empathy for them, as if they were alive. Psychologists call this phenomenon object personification, and Autistics exhibit it at an elevated rate compared to the neurotypical population.[^6.6] We also tend to connect emotionally with animals more readily than people, which can also influence how our home environments should be arranged. Autistic people frequently rely on beloved objects to provide consistency, familiarity, and emotional grounding.[^6.7] Cleaning and getting rid of unnecessary things causes decision fatigue for many of us,[^6.8] because we have to think really effortfully about why we might want to hold on to something, and game out every possible scenario where it might come in handy. We also have to battle against social programming in the process: do I really want to throw out my action figure collection, or do I just think doing so will make me seem more adult? Do I never wear these boots because they are loud and impractical, or because they’re buried under a pile of t-shirts and I forget they exist? To manage these competing needs, Marta Rose has a few suggestions. First, you can display one item that represents a larger collection that’s become unwieldy. If you have dozens of collectible toys, for instance, you could put up a single shelf featuring your current favorites and store the rest away. Selecting which toys to “feature” each week or month can itself be a fun way to look through your whole collection and express yourself. You can also take photos of the objects to catalog them and throw some actual items away. Sometimes, old junk can be repurposed: old makeup and jewelry can be used to make visual art; holey T-shirts can be sewn together into a quilt. This often makes the pain of throwing away a beloved inanimate friend a little bit less painful, because they get to become part of something else that you’ll use and cherish. If you want to hold on to an entire collection but find it distracting to look at every day, you can hang a curtain over your shelves, or place things into closed bins. Marta also recommends Autistic people consider hiring someone to help them tidy and keep their spaces clean. Hiring a house cleaner or tidier is reaching out for an accommodation that you need, though Marta observes many Autistic people (particularly women) feel shame about enlisting that help at first. Additionally, some Autistic people might feel agitated or dysregulated by having a stranger in their home rearranging or cleaning their things, or they may need cleaning tasks to be done in a very particular way, and managing that can be frustrating for everyone involved. For many Autistic people, affording regular house cleaning visits may be out of reach. Some find a workaround by enlisting the help of friends or romantic partners, or by trading skills on local exchange and marketplace groups. I know one Autistic person who loves organizing homes and finds cleaning soothing, so she actually tidies other disabled people’s houses for free, or in exchange for supplies she needs or home-cooked meals. Algedra Interior Design is a Dubai-based interior design firm that has consulted with Autistic people and families to develop a handful of divergent design best practices.[^6.9] Their tips are pretty unsurprising, in light of all the research we’ve reviewed thus far: stick to clean lines and muted colors, such as pastels and earth tones; avoid loud patterns, bright lights, or ornate details. If you self-stimulate in ways that might cause physical harm (for example, swinging your arms around), avoid furniture with sharp corners. If your body craves movement, you can lay down a soft mat to flop onto. Algedra also recommends using insulation, rugs, and decorative soundproofing panels to dampen noise in an inobtrusive way. Of course, these principles do not apply to everyone. Autistic people’s needs and preferences are incredibly varied, as we’ve already discussed throughout this book. Unmasking in one’s living environment means detaching from expectations about how one “should” live, first and foremost. Some Autistics are sensory seekers and crave bold, bright lights, or lots of sound, and their homes reflect that. Honoring the need for stimulation and excitement is just as important as providing quiet and stillness, and so for some Autistic people, unmasking your home may mean simply giving yourself permission to keep your space as cluttered as you like. Clara, the Pete Burns superfan, knows that she feels best when she’s surrounded by all her favorite records, concert posters, makeup, and loud accessories. “I need color and stuff, and a place to play my music as loud as I want,” she says Here are some questions to get you reflecting on what you need out of your home and workspace, and how you might make your own environment a little more affirming: #### Divergent Design Questions * What are some textures that ground you or your senses? * Do you enjoy a minimalistic, spare space, or a cozy space filled with familiar objects? * What smells do you find relaxing? What smells invigorate you? * Do you enjoy dim light, colorful lights, or bright, white lights? * What objects do you enjoy holding or having near you? * Do you need background noise in order to focus? Is there ambient noise in your surroundings that you need to block out? * Do you hold on to any objects or furniture out of a sense that you “should” appreciate them? If you could let go of those things, what might you want to put in their place? One of the core elements of Marta Rose’s divergent design approach is to look at lived experience as data. The best predictor of how you will use a space (and what you need a space to be able to do) is how you already use it. If you never eat dinner in the dining room, maybe that space can become a game room instead. If putting on a fitted sheet is so frustrating that you never make your bed, you can just lay a top sheet directly onto your mattress. In fact, this is how most humans have handled bed dressing throughout history![^6.10] You don’t need to live like a “presentable” adult. You can do your own thing in your own unique way—and that means you can reexamine your habits, your living space, and even your approach to time. ### Reimagine Success and Time “I don’t understand why the workday is eight hours,” Sue tells me. “I can get everything done in about three.” Sue is in her early fifties and works in tech. She only figured out she was Autistic a few years ago, when her teenaged son was assessed. Unlike many formerly masked Autistics I spoke to, Sue didn’t view it as a major revelation. It’s just given her a new vocabulary for why she finds other people so confounding. “I’ve come to understand that neurotypicals need time talking, arranging papers, opening and closing their email over and over and not getting much done,” she says with a shrug. “I believe that some of them actually enjoy being at the office all day, and they’d rather take all day to plod through something than hunker down and finish it.” Sue has been able to shape her life around the fact she’s very efficient, and has little patience for activities she perceives as a waste of time. “I get the day’s [^6.work] tasks done with by about lunchtime usually, then I go run errands and exercise. By mid-evening, I’m ready to do work again, so I knock out a whole bunch of emails or whatever else. My coworkers always wake up to a ton of Slack messages from me about what needs fixing.” Years ago, Sue’s manager learned that by giving her flexibility, the organization gets to benefit from her natural productivity and thoroughness. As we’ve repeatedly discussed in this book, research shows Autistic people pay much closer attention to small details than neurotypical people do, particularly when they have the cognitive energy to do so, and in the workplace that can have real benefits.[^6.11] Many tech companies actively recruit Autistic employees because we have a reputation for doing thorough work.[^6.12] This can create an exploitative workplace culture, though, where our disabilities are only valued insofar as they generate profit for somebody else. It’s a highly conditional form of acceptance, one only reserved for the apparently “high functioning” and those willing to define their lives by their productivity. However, the tech sector does tend to be a place where being direct or socially awkward is a bit more accepted, and in Sue’s case, it’s been a good fit. She appreciates she can be her authentic, brusque self at work. “I don’t have a lot of patience for inefficiency or sloppiness,” she says, “or being asked to do work that is meaningless busywork. The upshot of that is that when you work with me, you know I’m raising the standard.” The schedules and work habits of Autistic people challenge the prevailing neurotypical, one-size-fits-all conception of time. Like Sue, many of us are able to complete a great deal of work in a single hyperfocused burst, though typically we’ll need much more rest and recovery in order to sustain such efforts. The sleep-wake cycles of Autistic adults also differ, on average, from the circadian rhythms of neurotypicals,[^6.13] and many of us experience sleep disorders.[^6.14] One reason that we may need more sleep than others is just how tiring it is for us to be in the world. Sensory overload, social overwhelm, and the pressures of masking all significantly drain our batteries. This means many of us are not well suited to a nine-to-five job, and keep other hours instead. Of course, industrial-organizational research suggests that actually very few people thrive in a rigidly structured eight-hour work environment, regardless of disability status. Most workers are only capable of truly focusing and being “productive” for about four hours per day.[^6.15] Long workdays and long commutes erode a person’s life satisfaction,[^6.16] job satisfaction,[^6.17] and their physical and mental health.[^6.18] In addition, many of the features of the neurotypical workplace are distracting and anxiety-provoking for allistics as well as Autistics. Allistics just tend to be better positioned to push through the discomfort of bright fluorescent lights or a coworker’s pungent cologne. In this way, to acknowledge the needs of Autistic workers is to listen to the canaries in the coal mine: our sensitivities and needs help lay bare just how unfair many work expectations are, even for neurotypical people. Many of the Autistic people I interviewed for this book are self-employed, independent contractors, or work in a field that allows for flexible scheduling. Autistic author and stripper Reese Piper tells me that her work schedule at the club varies based on her energy levels. Some weeks, she has it in her to work three ten-hour shifts; other weeks she only has the energy for one. When business is good, Reese can earn enough money to pay her monthly bills after just a couple of days of dancing, and she can take days or weeks off on relatively short notice. I know several other Autistic sex workers personally who got into the field because of the flexibility it allowed them. Plus, emotional labor and masking as friendly and interested is recognized as part of the work of sex work. Clients are often willing to pay a high price for an authentic-feeling social and emotional experience. For Autistic people who have been obliged to mask all their lives, it can be really empowering to be paid for that skill—and to be able to afford enough down time to recover from having to do it. Sometimes, upending neurotypical approaches to time means pouring more energy into our passions, rather than less. Autistic sex educator and researcher Stevie Lang describes how intense focus on a special interest can itself be restorative:[^6.19] “When I am actively working on something, I turn my whole attention to it,” he writes. “After this kind of focus, I need rest. Resting doesn’t always look like relaxing baths or naps. It might look like immersing myself in work on as special interest, or zoning out in front of a screen.” Autistic people don’t necessarily thrive in judiciously balanced days where rest, work, and play are parceled out in equal amounts. Some of us operate best on boom-and-bust cycles of intense hyperfocus followed by recuperation time. I’ve had periods of my life where I’ve spent upwards of thirty hours per week writing and blogging, in addition to my day job, and found that pace incredibly exciting. Other times I’ve spent every free moment deep-reading random subreddits and blogs until my eyes felt like they were going to melt out of my skull. I loved every minute of it, and craved doing it again. When I’m swept up in a special interest, I feel alive. The concepts of “work-life” balance and “burnout” just don’t always translate to Autistic people’s schedules in the ways neurotypicals might expect. I’ve gotten intense burnout from periods of my life where I worked relatively little but socialized a lot, for example. Engaging our special interests is an important part of maintaining Autistic people’s mental health; one study by clinical psychologist Melis Aday found that Autistic adults’ participation in special interests was associated with stress management, and with having low levels of depression.[^6.20] One interpretation of this data is that when an Autistic person has the energy to enjoy their special interests, doing so is a valuable anxiety-reduction technique. It’s equally important that we make time for repetitive, self-stimulatory behavior as well, as research has repeatedly shown that improves our mental health and coping.[^6.21] Neurotypical standards don’t account for Autistic people’s need for time to recharge, fidget, and hyperfocus on our favorite activities. This may mean we don’t have the energy or time to keep up with other tasks at an abled person’s pace. Because Autistic people’s motivation level, interests, and social and sensory requirements shift, Marta Rose suggests we can think of time as a spiral rather than a straight line.[^6.22] Rather than being parceled out in detached chunks with predetermined purposes (lunch time, work time, sleep time), we can see time as flowing and even folding back on itself, an overlapping series of cycles, periods of dormancy intersecting with growth. She writes: “Almost all of the standard measures of time that we now take for granted—the way our hours and days and weeks are structured—are based on a factory model of work. I call this Industrial Time…. There are other ways of thinking about time. Seasonal ways. Cyclical ways. Ancient ways.” Throughout much of human history, time was a relatively intuitive concept; the seasons and daylight cycles influenced people’s activities and their expectations. This all changed with the invention of electricity, and industrialized work that took place in lightbulb-lit warehouses and offices. As digital work tools have expanded, the possibility of perpetual work has taken over our lives. There are no periods of dormancy, no dark nights, and no snow days. There is no escaping work (and productivity tools and apps), even when we are at home. Under a capitalist, Industrial Time framework, any project that is abandoned or left unfinished is seen as a “failure”—time wasted because it didn’t result in a clear end product. But when we look at time as a series of cycles or spirals with goals that are ever-shifting, we can recognize that the learning and reflection we put into an aborted project (or even into masking) often pays off, just not in the way we expected. Every disappointment or failure teaches us something about what we want, and what is best for us. “Reframe failure as data,” Marta writes, “and everything changes.” Marta encourages neurodiverse people to think of progress not as approaching a fixed point that lies ahead of us, but as movement and adaptation, slowing down and speeding up as our situation requires. Because Autistic minds are all about understanding details and analyzing complex systems of information, it makes sense to think of our lives as fractal, forever expanding to new subjects and narrowing into precise focus at the same time. We’re not single-minded Marios, running across a side-scrolling level to rescue Princess Peach. We’re more like the protagonist of the video game Katamari Damacy, a freaky, colorful demigod who rolls an ever-growing ball of objects around, each step forward attracting more random items into his ball’s expanding gravitational field until it engulfs the universe. We don’t complete discrete projects. We build worlds. On a practical level, how can an Autistic person learn to embrace spiral time? Marta Rose says it comes down to two points: * Expand the time frame you use to gauge productivity and success. Take the “long view” of your life. Don’t be afraid to cycle back to old projects, or let a passion go when it’s not serving you. * Slow down. Stillness helps neurodivergent minds process the huge quantities of data we take in. It’s very difficult for us to unhitch our self-images from neurotypical expectations, slow down, and build a life that really reflects the people we want to be. Almost every Autistic person I spoke to has found that in order to build a life that suits them, they’ve had to learn to let certain unfair expectations go, and withdraw from activities that don’t matter to them. It’s scary to allow ourselves to disappoint other people, but it can be radical and liberating, too. Admitting what we can’t do means confronting the fact we have a disability, and therefore we occupy a marginalized position in society—but it also is an essential part of finally figuring out what assistance we need, and which ways of living are best for us. You have to be able to say no to certain unreasonable expectations in order to genuinely say “yes” to the things you care about. ### Do Your Own Thing, Your Own Way Rory is an ADHD and Autism self-advocate and researcher living in New Zealand. Like so many of us, they’ve developed Autism-friendly “life hacks” to make regular life manageable. These are compensation strategies in a sense, but their goal isn’t to mask Rory’s neurodiversity, so much as to make life easier and more bearable. In the past Rory used to struggle to stay focused while doing chores. They’d get distracted and wander off to do something else. Now, when it’s time to do the dishes, they put on a cute pink-and-cream colored apron, don some noise-blocking headphones, and place mirrors in front of exit points, so that if their mind (or body) wanders away from the sink, they see their reflection and remember to keep scrubbing. “My dishes ‘costume’ helps me stay on track,” they say. “Mirrors remind me what I am supposed to be doing.”[^6.23] Autism and ADHD can make many household chores absolute hell to keep up with. Dirty dishes are smelly and slippery; scrubbing a sticky countertop or dirty toilet over and over is understimulating as well as physically unpleasant. Shifting between cleaning tasks is laborious, since most of us would much rather focus on just one thing at a time. We often have trouble dividing up complex activities into small steps, or putting those steps into a logical sequence. So a simple-sounding goal like “do the dishes” can quickly become a long list of exhausting steps: gather up the dirty glasses and bowls from around the house, soak the filthy pots and pans, make space on the dish rack, wash and dry everything, put everything away, all while coping with nauseatingly gross odors and wet shirtsleeves that make upsetting static travel up and down our arms. Many neurodiverse people suffer from Autistic inertia.[^6.24] The same heightened focus that makes us so good at studying our special interests for hours also makes it challenging for us to get off the couch and attend to the overflowing trash. To an external, neurotypical observer, it doesn’t look like we’re struggling. It just looks like we’re being “lazy.” Almost every neurodiverse person I’ve spoken to has been deemed “lazy” numerous times by exasperated parents, teachers, and friends. People see us sitting frozen, incapable of taking action, and assume it’s because we don’t care or lack willpower.[^6.25] Then they admonish us for being apathetic and unreliable, which leaves us feeling even more paralyzed by anxiety. Neurotypicals also tend to assume we know how to complete a chore or task without instructing us in exactly what it entails, not understanding that we can’t intuit our way through unstated expectations. We may not recognize, for example, that a request to “clean the bathroom” includes scrubbing the shower, floor, sink, and mirrors, not just tidying up. Alternatively, we might not know what level of clean is acceptable, and get stuck meticulously stripping out every bit of detritus in the grout on the floor. When our best guesses at what neurotypicals want from us proves incorrect, we get reprimanded for going too slowly, doing too sloppy a job, or not taking the other person’s perspective. Many of us get trapped in a feedback loop of learned helplessness, confusion, shame, and frozenness as a result. Rory’s “dishes costume” and mirror system is a brilliant solution to many of the problems that make chores difficult for Autistic people. The apron is cute and inviting, lending a bit of fun to a dull activity. Putting on a task-specific outfit helps Rory mentally shift into “cleaning mode.” The headphones and mirrors help them mentally stay there. These tools allow Rory to take full responsibility for getting the dishes done, without relying on a non-Autistic person for guidance or prompting. (Sadly, we can’t always rely on the people around us to be patient or understanding.) Autistic people are constantly having to invent our own unique ways of getting things done. We use extensive research, digital tools, and a variety of little sneaks and cheats to brute-force our way through activities that NT people don’t even think about. Rhi, an Autistic blogger based in the United Kingdom, explains that she uses online research to plan ahead any time she visits a new place. “I need to know where the front door is. Where the parking is. Who I will have to interact with,” she writes.[^6.26] With tools like Google Streetview and Yelp at her disposal, she says life is much easier than it used to be. Kaitlin, who is both Autistic and in recovery from an eating disorder, has also used online research to psychologically prepare for meals out with friends. “I’ll look at everything on the menu online,” she says, “and figure out what I can eat that is not going to make my anorexia or sensory issues freak out. I’ll also practice ordering it out loud, especially if the name for the dish is in another language, and I don’t know how to pronounce it.” I don’t know any neurotypical people who sit at home googling how to pronounce words like bouillabaisse or injera so they don’t seem “weird” at a restaurant. But for Autistics, this level of scripting and pre-planning is normal.[^6.27] It gives us a comforting sense of mastery and control. However, when neurotypical people figure out we’ve put this much time and thought into activities that are “basic” to them, they tend to find it very off-putting. So for masked Autistics, blending in isn’t just a matter of figuring out the right hacks. We also learn to hide the fact we’re relying on such hacks at all. Kaitlin says that sometimes her friends “catch” her using social scripting at restaurants. Because of her eating disorder history, this level of effort and forethought reads as suspicious: “My friend Amy figured out I was studying restaurant menus in advance, because I knew too much about the menu. She thought that meant I was counting calories and still active in my eating disorder. You have to walk this tightrope. Know enough, but not too much, or people find it very awkward.” Amy couldn’t understand that Kaitlin studied the menu in order to manage and reduce anxiety related to her eating disorder. Instead, she assumed that her friend was worrying “too much” about the menu because she was restricting her diet again. For masked Autistic people, knowing “too much” or thinking about something too deeply is seen as suspect. People find it calculating or creepy for us to put more effort into something they never grant a passing thought. In all of these ways, Autistic “life hacks” and the pressures of masking are quite often linked. But they don’t have to be. Though neurotypical people expect us to hide the efforts we go to in order to fit in, not hiding our brushstrokes can be a revolutionary act. If something is difficult for us, we shouldn’t have to pretend it’s easy, or hide our exhaustion or stress. And if we need a lot of information in order to feel comfortable navigating an unfamiliar space, we shouldn’t have to conceal that fact, either. Though Kaitlin is not out as Autistic to everyone, she did decide to explain her “guilty” menu knowledge to Amy. “When I was younger and even more insecure, it would have been an embarrassment to reveal oh yeah, actually I have been reading menus ahead of time. But Amy knows I have an Autistic brother, she knows how that affects his life. So I told her, look, I’m like he is, and this is what we do. It helps me to study new places and new foods.” Now that Amy understands Kaitlin’s Autistic life hacks, the two have bonded over it. When they go out to eat, Amy asks Kaitlin about which ingredients are in a dish, or where a restaurant’s bathrooms are located. Instead of needing to hide her prep work, Kaitlin gets to share it. Many Autistic “life hacks” involve using subtle accessibility tools that don’t mark us as disabled. We trade notes on which earplugs look the most subtle, which noise-canceling headphones are the most stylish, or how to use hobbies like crocheting or knitting to process social anxiety and avoid eye contact in classrooms. These are popular compensation methods because they work really well. But we don’t always have to rely on subtle approaches that appeal to neurotypical sensibilities. We can proudly, visibly do our own things in our own ways, and share the shortcuts and systems that make our lives possible. We can stim with big, intense gestures, wear large, obvious ear defenders, and ask for help when we need it. The more honest we are about the challenges we’re facing, the harder it will be for neurotypical people to ignore our voices, or the fact that most public spaces are still incredibly inaccessible. Being more radically visible is also an exercise in unlearning shame. ### Be Radically Visible Sky Cubacub is the founder of Rebirth Garments, a clothing and accessories company that centers on the needs of queer and disabled bodies. Sky’s shop features a wide variety of colorful, comfortable items for people of all genders and sizes: bodysuits assembled from panels of fishnet and neon fabric, gender-affirming chest binders that aren’t too restrictive or tight, and a large array of brightly patterned T-shirts, bandanas, and pins. At the beginning of the COVID-19 pandemic, Rebirth Garments was one of the first shops to offer face masks with clear vinyl windows that make it possible to read the wearer’s lips. For many disabled people (including Autistics), being able to read a person’s lips makes it much easier to follow a conversation. With everyone wearing masks, I struggled to tell when someone was speaking to me, because I relied on the visual cue of their lips moving to tune my attention toward them. The clear window masks were in such high demand Sky decided to give their design away for free. They’re more than a fashion visionary; they’re a political visionary, too, and that’s evident in every aspect of how they run their business. Their entire body of work is driven by their philosophy of radical visibility, which they’ve discussed in workshops, a TEDx talk, and in their zine, Radical Visibility: A Queercrip Dress Reform Movement Manifesto. What is radical visibility? It’s an approach to LGBT and disabled acceptance that emphasizes and celebrates that which is usually obscured. It lays claim to words that have been used to dehumanize our communities—queer, cripple, mad—and wears them defiantly, as a source of pride. Radical visibility presents tools such as canes and prostheses as enviable fashion accessories. It renders our differences cool. “Cultural norms don’t encourage trans and disabled people to dress stylishly or loudly,” Sky writes.[^6.28] “Society wants us to ‘blend in’ and not draw attention to ourselves. But what if we were to resist society’s desire to render us invisible? What if, through a dress reform, we collectively refuse to assimilate?” Radical visibility, in other words, is absolutely antithetical to masking. Where masking conceals, radical visibility steps into the limelight. Where masking scans the environment constantly for signs of social threat, and reins in the unruly stims and tics of the Autistic body, radical visibility encourages it to simply be. A masker gets their needs met in private, through a serious of apologetic half measures and veiled coping mechanisms; a radically visible person openly declares who they are and what they require, because it’s what they deserve. Long before figuring out I was Autistic, I had noticed how visibly disabled people were encouraged to minimize their difference. In high school a close friend was looking to buy a wheelchair with an atomic green frame. It would have really suited her; she had a kind of emo-indie sense of style at the time and the bright green chair would have really worked with it. But my friend’s mother discouraged her. “You don’t want your wheelchair to be the first thing people notice when they look at you,” she said. Having a black, nondescript wheelchair didn’t really change the fact that disability was the first thing people saw when they looked at my friend. We were living in too ableist of a world for that. In public, strangers talked down to her, as if she were a child, or they acted as if she couldn’t speak for herself. Ableism inclines us to zero in on the aspects of a person that strike us as unusual. The widespread social exclusion of disabled people contributes to this, too. The fewer people in wheelchairs you see, the more noteworthy a wheelchair seems. And the more strangers gawk and stare at wheelchair users, the less comfortable a physically disabled person feels entering the world. It’s a self-perpetuating cycle of exclusion. Having a bright green chair might have done more in the long term to normalize my friend’s disability and make it unremarkable to people. It would have conveyed that wheelchairs are not something to hide, and that disability is not something to ignore or paper over with condescension or euphemism. And as the research on self-stigma that I discussed earlier suggests, wearing one’s identity with pride can reduce feelings of self-consciousness and alienation. Autism isn’t always as visually obvious as using a wheelchair, but research shows there are many subtle markers of our difference that neurotypical people do pick up on, though not always consciously. Sasson and colleagues (2017), for example, found that neurotypical people quickly and subconsciously identify that a stranger is Autistic, often within milliseconds of meeting them.[^6.29] They don’t realize that they’ve identified the person as Autistic, though; they just think the person is weird. Participants in the study were less interested in engaging in conversation with Autistic people and liked them less than non-Autistics, all based on a brief moment of social data. It’s also important to point out that the Autistic people in this study didn’t do anything “wrong”; their behavior was perfectly socially appropriate, as was the content of their speech. Though they tried their damnedest to present as neurotypical, their performance had some key tells, and was just slightly “off,” and they were disliked because of it. For all the effort that maskers put into hiding our neurodiversity, it often blows up in our faces. Inauthenticity and a forced-seeming social performance rubs neurotypicals the wrong way. In a landmark study into the psychology of perceived “creepiness,” psychologists McAndrew and Koehnke (2016) asked 1,341 respondents to answer questions about which personal qualities and behaviors they associated with “creepy” people, and used statistical factor analysis to develop a measurable “creepiness” factor. The creepiness factor they developed included the following traits: a person having awkward, unpredictable behavior, an unnatural-looking smile, laughter that occurred at “unnatural” times, speaking for too long about a single topic, and not knowing when to end a conversation.[^6.30] When Autistic people attempt to socialize and bond with others in an affable, enthusiastic way, these are often the very traits we embody. Even as we try to put the neurotypical people around us at ease by smiling, keeping the conversation moving, and staying present, we might be seen as scary or unsettling. A series of experiments by social psychologists Leander, Chartrand, and Bargh (2012) found that when a person engages in social mirroring in an even slightly inappropriate way, it skeeves people out, and even makes them feel physically colder.[^6.31] A little bit of mimicry is normal among friends. People mirror one another’s postures and mannerisms as they get comfortable and fall into sync. But if you mirror someone too much, or at the wrong time, these studies show you can literally give other people the chills. Autistic maskers try really hard to mirror other people, but since we can’t do it as fluently and effortlessly as neurotypicals do, we often unwittingly set off NT’s creep-dars. The solution, then, is to stop hiding and pretending to be something we’re not. Instead of straining (and failing) to imitate NT people, we can become radically visible. Sasson’s research found that when participants were told they were interacting with an Autistic person, their biases against us disappeared. Suddenly they liked their slightly awkward conversation partner, and expressed interest in getting to know them. Having an explanation for the Autistic person’s oddness helped the creeped-out feeling go away. Follow-up research by Sasson and Morrison (2019) confirmed that when neurotypical people know that they’re meeting an Autistic person, first impressions of them are far more positive, and after the interaction neurotypicals express more interest in learning about Autism.[^6.32] Radical visibility has its rewards. In Sky’s work, to be radically visible is to embrace self-presentation as a form of protest. They write: “Radical Visibility is a call to action: to dress in order to not be ignored, to reject ‘passing’ and assimilation.” In person, Sky looks exactly as eye-catching and cool as they do in their photo shoots: they wear a silver-and-black headpiece made of metal scale mail and brightly patterned leggings and a crop top, with geometric crystal designs painted on their face. There’s no ignoring them, no fear of the abled gaze causing them to hide how they naturally move, or what their body needs. Years ago, following the development of a stomach disorder, Sky had to stop wearing firm, structured pants (like jeans) in favor of bottoms made from stretchy materials. It’s rare to see them wearing anything other than leggings or comfy bike shorts. In this respect, Sky’s experiences are instructive to Autistics seeking to unmask. So many of us cram our bodies into uncomfortable, bland “professional” attire in order to blend in, though doing so can feel like the death of our individuality, or a sensory assault. For masked Autistics who’d like to take a more radically visible approach to personal style, here are some ideas to get you started: #### Radical Autism Visibility: Dressing to Unmask * Identify which items of clothing put too much pressure on your body, or apply pressure in the “wrong” places. Replace too-tight pants with similar styles made from stretchy fabrics, for example, or swap out structured bras for bralettes. There are even neckties that come in soft, more flexible materials. * Identify which types of clothing provide grounding or soothing sensory input. For example, some Autistic people enjoy the feeling of compression on their wrists, and tight watches or bracelets. Others enjoy heavy coats or vests. * Find and remove other sources of sensory stress in your wardrobe: try cutting out all the tags in your clothing and placing inserts in uncomfortable shoes. Many Autistic people walk on the balls of their feet, so you may need extra support there. * Figure out which patterns and styles really feel joyful to wear. Do you feel most “yourself” when you’re all in black? Or do you prefer to be a bold rainbow? * Incorporate special interests into your daily attire. Wear T-shirts with your favorite anime characters, or in more formal environments, get video-game-themed cuff links or lapel pins. “Closet cosplay” as your favorite characters in subtle ways. * Stim in style: wear jewelry you can fidget with or chew on (chewelry), keep fidget toys in pockets, cover your phone case with colorful stickers or a pop-up stand you can fiddle with. Many masked Autistic people are so divorced from their own bodies and self-presentation that it’s hard to imagine how taking real ownership of it might feel. If your clothing has only ever been a neurotypical costume, you might not have any idea what authentic personal style would even look like. If that’s the case, start small, and focus on alleviating your discomfort. Get rid of the clothing items that cause you pain or distress. Swap out uncomfortable items for more forgiving alternatives, and question ideas about respectability that might be holding you back. You might not need to wear the makeup, pantyhose, or rigid suit jackets a mentor or parent once taught you was compulsory. Maybe you can do the “big chop” and stop chemically straightening your hair,[^6.33] or wear jewelry and textiles traditional to your home culture. Much of the professional world does place tight restrictions on how a person ought to dress and present themselves, but if you are among the majority of Autistics who work outside of a corporate environment, you may have more wiggle room than you think. A growing number of Autistic creators are making wearable stim toys and accessibility tools. Carly Newman, a visual artist and jewelry designer, has made a line of earplug earrings for Autistic folks.[^6.34] Instead of trying to hide the fact that I sometimes need earplugs when I’m in public, these earrings put my accessibility tools on display. Companies like Stimtastic and ARK Therapeutic specialize in stim jewelry, such as spinning rings and acupressure bracelets. Some Autistic creators have also made buttons, hats, and jewelry that do their communication for them: big badges in green that read Come Say Hi! or in yellow that say Give Me Space. At conventions that are well attended by Autistic people, these tools are invaluable, helping us socialize while also putting our boundaries on display. They aren’t broadly normalized yet, but just like displaying one’s pronouns on a pin or in an email signature, the more people adopt them, the more normalized thinking about them becomes. Of course, wearing affirming clothing and accessories is just one means of embracing radical visibility. At its core, both unmasking and radical visibility are about dropping the façade of compliant neurotypicality, and learning to live openly and honestly as oneself. That is primarily a change in how we express ourselves and our needs to other people. To that end, here are a few tips for how to practice radical visibility in your daily life: #### Everyday Unmasking: Daily Challenges for Being Radically Visible * Disappoint someone: Practice saying “no,” “I’m not available to do that,” “I’m uncomfortable with that,” or “I have to go now” without any explanation or apology. * Express disagreement in a situation where you’d normally just nod along to keep the peace. * Notice when you feel pressured to do something you don’t wish to do. Practice observing this aloud: “I’m not sure why you are pushing this, because I already said no.” * Try to go an entire day without guessing or anticipating anyone’s emotions. * Try to go an entire day without controlling what messages your facial expressions or body language is giving off. * Ask for something you usually feel too guilty to request. * Go through an entire conversation without faking any reactions or emotions. * Sing along to your favorite music while walking down the street. * Bring a stim toy with you to a social gathering or public space, and use it without shame. * Wear a fancy outfit or costume you absolutely love, instead of waiting for an event or an “excuse” to wear it. * When a friend asks you how you are doing, give them an honest answer. * Take action without running it past anyone else for approval. * Share big emotions with safe people: find someone you can cry with, or vent to a friend about something that fills you with rage. * Tell someone you trust about your neurodiversity, and what it means to you. Radical visibility is self-advocacy, as well as self-expression. But for most masked Autistic people, it’s downright terrifying to stand up for yourself. We tend to default to people pleasing, smiling, and laughing uncomfortably through social difficulty, and to do so in such a reflexive way that it’s as if our true feelings and preferences disappear when other people are around. These reflexes exist to protect us, and there is no shame in having them. However, if we wish to live more freely, we need to cultivate relationships where we can communicate honestly and feel heard and respected. The next chapter is all about constructing Autistic relationships that help us to thrive. By this, I mean forming meaningful relationships and a sense of community with fellow Autistic people, as well as making our existing relationships with allistic people far more Autism-friendly. [^6.1]: Rose, M. Principles of Divergent Design, 1A. https://www.instagram.com/p/CKzZOnrh_Te/. [^6.2]: Van de Cruys, S., Van der Hallen, R., & Wagemans, J. (2017). Disentangling signal and noise in autism spectrum disorder. Brain and Cognition, 112, 78–83. [^6.3]: Zazzi, H., & Faragher, R. (2018). “Visual clutter” in the classroom: Voices of students with Autism Spectrum Disorder. International Journal of Developmental Disabilities, 64(3), 212–224. [^6.4]: If you can afford it – see this critique about how minimalism is often a class status symbol https://forge.medium.com/minimalism-is-a-luxury-good-4488693708e5. [^6.5]: Rose, M. Principles of Divergent Design, Part 2A. https://www.instagram.com/p/CK4BHVjhmiR/. [^6.6]: White, R. C., & Remington, A. (2019). Object personification in autism: This paper will be very sad if you don’t read it. Autism, 23(4), 1042–1045. [^6.7]: For a discussion of “comfort items” in stress management for Autistics, see, for example: Taghizadeh, N., Davidson, A., Williams, K., & Story, D. (2015). Autism spectrum disorder (ASD) and its perioperative management. Pediatric Anesthesia, 25(11), 1076–1084. [^6.8]: Luke, L., Clare, I. C., Ring, H., Redley, M., & Watson, P. (2012). Decision-making difficulties experienced by adults with autism spectrum conditions. Autism, 16(6), 612–621. [^6.9]: https://algedra.com.tr/en/blog/importance-of-interior-design-for-autism. [^6.10]: https://www.vice.com/en/article/8xk854/fitted-sheets-suck. [^6.11]: https://www.discovermagazine.com/health/this-optical-illusion-could-help-to-diagnose-autism. [^6.12]: https://www.monster.com/career-advice/article/autism-hiring-initiatives-tech. [^6.13]: Baker, E. K., & Richdale, A. L. (2017). Examining the behavioural sleep-wake rhythm in adults with autism spectrum disorder and no comorbid intellectual disability. Journal of Autism and Developmental Disorders, 47(4), 1207–1222. [^6.14]: Galli-Carminati, G. M., Deriaz, N., & Bertschy, G. (2009). Melatonin in treatment of chronic sleep disorders in adults with autism: A retrospective study. Swiss Medical Weekly, 139(19–20), 293–296. [^6.15]: https://www.businessinsider.com/8-hour-workday-may-be-5-hours-too-long-research-suggests-2017–9. [^6.16]: Olsson, L. E., Gärling, T., Ettema, D., Friman, M., & Fujii, S. (2013). Happiness and satisfaction with work commute. Social Indicators Research, 111(1), 255–263. [^6.17]: Su, J. (2019). Working Hard and Work Outcomes: The Relationship of Workaholism and Work Engagement with Job Satisfaction, Burnout, and Work Hours. Normal: Illinois State University. [^6.18]: Sato, K., Kuroda, S., & Owan, H. (2020). Mental health effects of long work hours, night and weekend work, and short rest periods. Social Science & Medicine, 246, 112774. [^6.19]: https://www.instagram.com/_steviewrites/?hl=en. [^6.20]: Aday, M. (2011). Special interests and mental health in autism spectrum disorders (No. D. Psych (C)). Deakin University. [^6.21]: Kapp, S. K., Steward, R., Crane, L., Elliott, D., Elphick, C., Pellicano, E., & Russell, G. (2019). “People should be allowed to do what they like”: Autistic adults’ views and experiences of stimming. Autism, 23(7), 1782–1792. [^6.22]: Rose, M. (2020). Neuroemergent Time: Making Time Make Sense for ADHD & Autistic People. Martarose.com. [^6.23]: https://twitter.com/roryreckons/status/1361391295571222530. [^6.24]: http://unstrangemind.com/autistic-inertia-an-overview/. [^6.25]: Autistic inertia is frequently assumed to be “volitional.” See Donnellan, A. M., Hill, D. A., & Leary, M. R. (2013). Rethinking autism: Implications of sensory and movement differences for understanding and support. Frontiers in Integrative Neuroscience, 6, 124. [^6.26]: https://autistrhi.com/2018/09/28/hacks/. [^6.27]: Sedgewick, F., Hill, V., Yates, R., Pickering, L., & Pellicano, E. (2016). Gender differences in the social motivation and friendship experiences of autistic and non-autistic adolescents. Journal of Autism and Developmental Disorders, 46(4), 1297–1306. [^6.28]: http://rebirthgarments.com/radical-visibility-zine. [^6.29]: Sasson, N. J., Faso, D. J., Nugent, J., Lovell, S., Kennedy, D. P., & Grossman, R. B. (2017). Neurotypical Peers are Less Willing to Interact with Those with Autism Based on Thin Slice Judgments. Scientific Reports, 7, 40700. https://doi.org/10.1038/srep40700. [^6.30]: McAndrew, F. T., & Koehnke, S. S. (2016). On the nature of creepiness. New Ideas in Psychology, 43, 10–15. [^6.31]: Leander, N. P., Chartrand, T. L., & Bargh, J. A. (2012). You give me the chills: Embodied reactions to inappropriate amounts of behavioral mimicry. Psychological Science, 23(7), 772–779. Note: many of John Bargh’s priming studies have failed replication attempts in recent years. For a discussion of a failed attempt of a related but different series of temperature priming studies, see Lynott, D., Corker, K. S., Wortman, J., Connell, L., Donnellan, M. B., Lucas, R. E., & O’Brien, K. (2014). Replication of “Experiencing physical warmth promotes interpersonal warmth” by Williams and Bargh (2008). Social Psychology. [^6.32]: Sasson, N. J., & Morrison, K. E. (2019). First impressions of adults with autism improve with diagnostic disclosure and increased autism knowledge of peers. Autism, 23(1), 50–59. [^6.33]: YouTuber Sundiata Smith has a video about natural Black hair care for those on the spectrum. You can watch it here: https://www.youtube.com/watch?v=KjsnIG7kvWg.