# Chapter 0 - Introduction * [INTRODUCTION](#introduction) * [Alienation](#alienation) * [Values-Based Integration Process](#values-based-integration-process) --- # INTRODUCTION ## Alienation When I moved from Cleveland to Chicago in the summer of 2009, I had no idea I’d need to make friends. I was twenty-one years old, serious, and socially withdrawn, and I truly believed I did not need other people. I’d moved to the city for graduate school and figured I could pour all my energy into classes and research and think of nothing else. Solitude had worked pretty well for me up to that point. I had excelled academically, and living a “life of the mind” kept me from worrying too much about my many problems. I had an eating disorder that had ravaged my digestive system, and gender dysphoria that made me resent how other people saw me, though I didn’t yet understand why. I didn’t know how to approach people or initiate conversations, and I didn’t care to learn, because most interactions left me feeling irritated and unheard. The few relationships I did have were enmeshed; I took responsibility for others’ problems, tried to manage their emotions for them, and lacked any capacity to say “no” to unreasonable requests. I didn’t know what I wanted out of life, other than to become a professor. I didn’t want a family, I didn’t have hobbies, and I believed I was incapable of really being loved. But I was getting good grades and my intellect earned me a lot of praise, so I just focused on those strengths. I pretended all the rest was a meaningless distraction. When graduate school began, I rarely went out with my new classmates. The few times I did, I had to get completely hammered to overcome my inhibitions and seem “fun.” Otherwise I spent whole weekends alone in my apartment, reading journal articles and falling down strange internet rabbit-holes. I didn’t let myself have hobbies. I barely exercised or cooked. I’d occasionally hook up with people if I wanted sex or even just a little attention, but every interaction was impassive and rote. I had no sense of myself as a multifaceted human being. By winter of that year I’d turned into a lonely, isolated wreck. I’d spend an hour sitting in the shower while the hot water rained down on me, lacking the will to stand up. I had trouble speaking to other people. I couldn’t think of any research ideas and lost all interest in what I was studying. One of my supervisors chewed me out for rolling my eyes at her during meetings. At night bone-shaking sobs of despair and overwhelm would overtake me, and I’d pace around my room, whimpering and striking myself in the temples with the heels of my hands. My solitude had somehow become imprisoning, but I was too lacking in social skills or emotional self-awareness to get myself out of it. I couldn’t understand how I’d gotten myself into that miserable position. How was I supposed to know I needed friends, and a life? How could I go about connecting with others, when every effort was so unsatisfying? What did I actually enjoy or care about? Around people, I felt I had to censor every natural reaction, and pretend to have interests and feelings that were normal. Plus, people were so overwhelming. They were all so loud and erratic, their eyes like painful laser beams boring into me. All I wanted to do was sit in the dark and not be bothered or judged. I believed something was fundamentally wrong with me. I seemed to be broken in ways I couldn’t explain, but which everyone else could see at a glance. I spent several more years languishing like this, working myself to the point of burnout, having emotional breakdowns, relying on romantic partners for social contact and a sense of worthiness, and googling things like “how to make friends” in the middle of the night. Through it all, I never considered asking for help or sharing with anyone how I felt. I lived by a very narrow set of rules, and remaining independent and invulnerable was chief among them. Things finally began to change for me in 2014, when I was on vacation at Cedar Point amusement park in Sandusky, Ohio. My family went there every single year. We were a family that loved our routines. I was sitting in a hot tub with my cousin, who had recently gone away to college and found the transition very challenging. He confessed to me that he’d recently been assessed for Autism. I had just completed my PhD in social psychology, so he wanted to know if I had any knowledge about Autism Spectrum Disorder. “Sorry, I really don’t know about that,” I told him. “I don’t study people with mental illnesses; my research is on the social behavior of ‘normal’ people.” My cousin started talking to me about all the things he struggled with—how hard it was to relate to classmates, how adrift and overstimulated he felt. A therapist had floated Autism as a likely explanation. Then my cousin pointed out all the Autistic traits he’d noticed were common in our family. We didn’t like change. None of us could handle talking about our emotions and mostly interacted using a surface-level script. Some of us had hang-ups about food textures and strong flavors. We rambled on and on about the subjects that interested us, even if it bored others to tears. We were easily overwhelmed by change and rarely went out into the world to have new experiences or make friends. When my cousin told me all this, I felt dread. I didn’t want any of it to be true because in my mind, Autism was a shameful, life-ruining condition. It made me think of people like Chris, an uncoordinated, “cringey” Autistic kid I’d gone to school with whom nobody had treated well. Autism made me think of withdrawn, prickly TV characters like Benedict Cumberbatch’s Sherlock, and the Big Bang Theory’s Sheldon. It called to mind nonverbal children who had to wear big clunky headphones to the grocery store and were viewed as objects rather than people. Though I was a psychologist, all I knew about Autism was the broadest and most dehumanizing of stereotypes. Being Autistic would mean I was broken. Of course, I’d already felt broken for years. As soon as I returned home from that vacation, I threw my bags down, sat on the floor, propped my laptop up on my knees, and started obsessively reading about Autism. I inhaled journal articles, blog posts, YouTube videos, and diagnostic assessment materials. I kept this obsessive reading mostly hidden from my then-partner, the way I kept all my deepest fixations hidden from people in my life. I soon learned that itself was a trait common among Autistics; we tend to latch on to subjects that fascinate us and focus on them with a fervor others find weird. After being mocked about our passions, we become secretive about our special interests. Already I was thinking about Autism in terms like we and us; I saw myself clearly reflected in the community, a fact that scared and exhilarated me. The more I read about Autism, the more things began clicking into place. I had always been overwhelmed by loud sounds and bright lights. I got inexplicably angry in crowds; laughter and chatter could make me blow up with rage. When I got too stressed out or became overcome with sadness, I found it hard to speak. I’d hidden all this for years because I was certain it made me a joyless, unlovable asshole. Now I was beginning to wonder why I believed such awful things about myself. Autism was my newest obsession, a thing I couldn’t stop reading and thinking about. But I’d had many other special interests in the past. I remembered being passionate about bat watching and horror novels as a child. Kids and adults alike had chided me for being too “weird” and “hyper” about those interests. I was “too much” in so many ways. To other people, my tears were immature tantrums and my opinions were condescending diatribes. As I grew up, I learned to be less intense, less embarrassing—less me. I studied other people’s mannerisms. I spent a lot of time dissecting conversations in my head, and I read up on psychology so I could understand people better. That was why I’d gotten a PhD in social psychology. I had needed to carefully study the social norms and patterns of thinking that seemingly felt natural to everybody else. After researching Autism privately for about a year, I discovered the Autistic self-advocacy community. There was an entire movement led by Autistic people who argued we should view the disability as a perfectly normal form of human difference. These thinkers and activists said our way of being wasn’t wrong at all; it was society’s failure to adapt to our needs that left us feeling broken. People like Rabbi Ruti Regan (author of the blog Real Social Skills) and Amythest Schaber (the creator of the Neurowonderful video series) taught me about neurodiversity. I came to recognize that many disabilities are created or worsened by social exclusion. Armed with this knowledge and a growing sense of self-confidence, I started meeting Autistic people in real life, posting about Autism online, and attending local meetups for neurodiverse people. I found out there were thousands of Autistics just like me, who discovered their disability in adulthood after years of confused self-loathing. As children, these Autistic folks had been visibly awkward, but they were mocked for it instead of given help. Like me, they had developed coping strategies to blend in. Things like staring at a person’s forehead to simulate eye contact, or memorizing conversational scripts based on exchanges they saw on TV. Many of these stealthily Autistic people fell back on their intellect or other talents to gain acceptance. Others became incredibly passive, because if they toned down their personalities, they wouldn’t have to risk being too “intense.” Beneath the inoffensive, professional veneers they had developed, their lives were falling apart. Many of them suffered from self-harm, eating disorders, and alcoholism. They were trapped in abusive or unfulfilling relationships, with no clue how to feel seen and appreciated. Nearly all of them were depressed, haunted by a profound sense of emptiness. Their entire lives had been shaped by mistrust in themselves, hatred of their bodies, and fear of their desires. I noticed that there were clear patterns in which kinds of Autistic people succumbed to this kind of fate. Autistic women, transgender people, and people of color often had their traits ignored when they were young, or have symptoms of distress interpreted as “manipulative” or “aggressive.” So did Autistic people who grew up in poverty, without access to mental health resources. Gay and gender nonconforming men often didn’t fit the masculine image of Autism well enough to be diagnosed. Older Autistics never had the opportunity to be assessed, because knowledge about the disability was so limited during their childhoods. These systematic exclusions had forced an entire massive, diverse population of disabled people to live in obscurity. This gave rise to what I am now calling masked Autism—a camouflaged version of the disorder that’s still widely neglected by researchers, mental health providers, and Autism organizations that aren’t led by Autistic people, such as the much-reviled Autism Speaks. When I use the term masked Autism, I’m referring to any presentation of the disability that deviates from the standard image we see in most diagnostic tools and nearly all media portrayals of Autism. Since Autism is a pretty complex and multifaced disorder, that covers a lot of different traits, which can manifest in many different ways. I’m also talking about any Autistic person whose suffering wasn’t taken seriously for reasons of class, race, gender, age, lack of access to health care, or the presence of other conditions. Usually it’s white boys with conventionally “masculine” interests and hobbies that are flagged as potentially Autistic when they are young. Even within that relatively privileged class, it’s almost exclusively wealthy and upper-middle-class Autistic kids who get identified.[^0.1] That group has always been the prototype for Autism when it’s described by clinicians or depicted in media. All the diagnostic criteria for Autism are based on how it presents in this group. Every Autistic person is hurt by this narrow conception of the disorder, even the white, rich, cisgender boys who are most likely to be reflected by it. For far too long, we have been defined only by the “hassle” that white Autistic boys caused their well-off parents. Our complex inner lives, our own needs and sense of alienation, the ways that neurotypical people confused, confounded, and even abused us—all were ignored for decades because of this lens. We were defined only by what we seemed to lack, and only insofar that our disabilities presented a challenge to our caregivers, teachers, doctors, and other people who held power over our lives. For years now, psychologists and psychiatrists have discussed the existence of “female Autism,” a supposed subtype that can look a lot milder and socially appropriate than “male” Autism does.[^0.2] People with so-called “female Autism” may be able to make eye contact, carry on a conversation, or hide their tics and sensory sensitivities. They might spend the first few decades of their lives with no idea they’re Autistic at all, believing instead that they’re just shy, or highly sensitive. In recent years, the public has slowly become familiar with the idea that women with Autism exist, and a few excellent books like Jenara Nerenberg’s Divergent Mind and Rudy Simone’s Aspergirls have worked to build awareness of this population. It’s also helped that high-profile Autistic women like comedian Hannah Gadsby and writer Nicole Cliffe have come out publicly as Autistic. There’s a significant problem with the concept of “female Autism,” though. It’s a label that doesn’t properly account for why some Autistics mask their Autistic qualities, or have their needs ignored for years. First, not all women with Autism have the “female Autism” subtype. Plenty of Autistic women visibly self-stimulate, struggle to socialize, and experience meltdowns and shutdowns. Autistic scientist and activist Temple Grandin is a great example of this. She speaks in something of a monotone, avoids eye contact, and even as a young child craved sensory stimulation and pressure. Though she’s very visibly and typically Autistic by today’s standards, Grandin was not diagnosed until adulthood.[^0.3] Autistic women aren’t overlooked because their “symptoms” are milder. Even women with really classically Autistic behaviors may elude diagnoses for years, simply because they are women and their experiences are taken less seriously by professionals than a man’s would be.[^0.4] Additionally, not everyone who has their Autism ignored and downplayed is a female. Many men and nonbinary people have our Autism erased, too. To call the stealthy, more socially camouflaged form of Autism a “female” version of the disorder is to indicate that masking is a phenomenon of gender, or even of assigned sex at birth, rather than a much broader phenomenon of social exclusion. Women don’t have “milder” Autism because of their biology; people who are marginalized have their Autism ignored because of their peripheral status in society. When an Autistic person is not given resources or access to self-knowledge, and when they’re told their stigmatized traits are just signs that they’re a disruptive, overly sensitive, or annoying kid, they have no choice but to develop a neurotypical façade. Maintaining that neurotypical mask feels deeply inauthentic and it’s extremely exhausting to maintain.[^0.5] It’s also not necessarily a conscious choice. Masking is a state of exclusion forced onto us from the outside. A closeted gay person doesn’t just decide one day to be closeted—they’re essentially born into the closet, because heterosexuality is normative, and being gay is treated as a rare afterthought or an aberration. Similarly, Autistic people are born with the mask of neurotypicality pressed against our faces. All people are assumed to think, socialize, feel, express emotion, process sensory information, and communicate in more or less the same ways. We’re all expected to play along with the rules of our home culture, and blend into it seamlessly. Those of us who need alternate tools for self-expression and self-understanding are denied them. Our first experience of ourselves as a person in the world, therefore, is one of being othered and confused. We only get the opportunity to take our masks off when we realize other ways of being exist. I have found that my entire life and nearly every challenge I’ve faced can be understood through a masked Autistic lens. My eating disorder was a way to punish my body for its unusual, Autistic mannerisms, and a means of making it conform to conventional beauty standards, protecting me from negative attention. My social isolation was a way of rejecting other people before they could reject me. My workaholism was a sign of Autistic hyperfixation, as well as an acceptable excuse to withdraw from public places that caused me sensory overwhelm. I got into unhealthy, codependent relationships because I needed approval and didn’t know how to get it, so I just molded myself into whatever my partner at the time was looking for. After a few years of researching Autism and forming my understanding of masking as a social phenomenon, I began writing about it online. I found that thousands of people resonated and identified with what I had to say. It turned out being Autistic wasn’t that rare at all (roughly 2 percent of people are diagnosed with it today, and many more have subclinical traits or cannot access diagnosis).[^0.6] Many individuals in my professional and social circles privately came out to me as neurodiverse as well. I met Autistic people with full-time jobs in visual design, acting, musical theater, and sex education—not fields people associate with our logical, supposedly “robotic” minds. I got to know more Black, brown, and indigenous Autistics, who had long been dehumanized by the psychiatric community. I met Autistics who’d at first been diagnosed with things like Borderline Personality Disorder, Oppositional Defiant Disorder, or Narcissistic Personality Disorder. I also found scores of transgender and gender-nonconforming Autistic people like me, who had always felt “different” both because of their gender and their neurotype. In each of these people’s lives, being Autistic was a source of uniqueness and beauty. But the ableism around them had been a fount of incredible alienation and pain. Most had floundered for decades before discovering who they truly were. And nearly all of them were finding it very difficult to take their long-worn masks off. Even this fact made me feel more comfortable in my own skin, and less broken and alone. So many of us had been taught we had to hide ourselves. Yet the more we joined in community with one another, the less pressure to mask we felt. By spending time with other Autistic people, I began to see that life didn’t have to be all hidden anguish. When I was around other Autistics, I was more able to be blunt and direct. I could ask for accommodations, such as dimming the lights or opening a window to dilute the stench of somebody’s perfume. The more other people around me relaxed, spoke passionately about their special interests, and rocked in place excitedly, the less shame I felt about who I was, and how my brain and body worked. For years now I’ve been using my skills as a social psychologist to make sense of the scientific literature on Autism, and connecting with Autistic activists, researchers, coaches, and therapists in order to firm up my understanding of our shared neurotype. I’ve also worked on unmasking myself, getting in touch with the vulnerable, erratic, odd version of me I’d been socially conditioned to hide. I’ve gotten to know a lot of leading voices in the Autistic self-advocacy community and read up on the many resources that Autistic therapists, coaches, and activists have developed to help train themselves and others to lower their inhibitions and drop their masks. Today I don’t hide the fact that I am pained by loud noises and bright lights. I ask people directly for an explanation when their words or body language don’t make sense. Traditional benchmarks of “adulthood,” such as owning a car or having children, hold no appeal for me, and I’ve learned that is completely okay. I sleep with a stuffed animal every night, and a loud fan blowing to block out my neighborhood’s ambient noise. When I’m excited, I flap my hands and squirm in place. On good days, I don’t think any of these things make me childish, or cringey, or bad. I love myself as I am, and others can see and love the real me. Being more honest about who I am has made me a more effective teacher and writer. When my students are struggling, I’m able to connect with them about how difficult maintaining a normal life really can be. When I write in my own voice, from my own perspective, I connect with an audience far more deeply than when I try to seem like a generic, respectable professional. Before I started unmasking, I felt cursed, and almost dead inside. Existence seemed like one long slog of faked enthusiasm. Now, though life can still be difficult, I feel incredibly alive. I want every Autistic person to feel the massive relief and sense of community I found by recognizing myself and beginning to unmask. I also believe that it is essential for the future of the Autistic self-advocacy community that we each work on living more authentically as ourselves and demand the accommodations we need. With this book, I hope to help other Autistic people understand themselves, join forces with fellow neurodiverse people, and gradually find the confidence to take their masks off. Unmasking has the potential to radically improve an Autistic person’s quality of life. Research has repeatedly shown that keeping our true selves locked away is emotionally and physically devastating.[^0.7] Conforming to neurotypical standards can earn us tentative acceptance, but it comes at a heavy existential cost. Masking is an exhausting performance that contributes to physical exhaustion, psychological burnout, depression, anxiety,[^0.8] and even suicide ideation.[^0.9] Masking also obscures the fact that the world is massively inaccessible to us. If allistics (non-Autistics) never hear our needs voiced, and never see our struggle, they have no reason to adapt to include us. We must demand the treatment we deserve, and cease living to placate those who have overlooked us. Refusing to perform neurotypicality is a revolutionary act of disability justice. It’s also a radical act of self-love. But in order for Autistic people to take our masks off and show our real, authentically disabled selves to the world, we first have to feel safe enough to get reacquainted with who we really are. Developing self-trust and self-compassion is a whole journey unto itself. This book is for any person who is neurodiverse (or suspects that they are neurodiverse) and wants to attain new levels of self-acceptance. Neurodiversity is a wide umbrella, including everyone from Autistics, to ADHDers, to people with Schizophrenia, brain injuries, or Narcissistic Personality Disorder. Though the book’s focus is masked Autistic people, I have found there is considerable overlap between Autistics and other neurodiverse groups. Many of us share mental health symptoms and traits and have overlapping or comorbid diagnoses. All of us have internalized mental illness stigma and felt the shame of deviating from what’s considered “normal.” Almost every person with a mental illness or disability has been crushed under the weight of neurotypical expectations, and has repeatedly tried and failed to earn acceptance by playing the rules of a game that was designed to harm us. And so, for nearly every neurodiverse person, the journey toward self-acceptance involves learning to unmask. In the following chapters, I’ll introduce you to a variety of Autistic people who flout the popular stereotypes. I’ll also explain the history of how Autism has been defined, and how that’s led us to the obscured and estranged place we’re in today. Using the real-life stories of Autistic people, as well as a bevy of psychological research, I’ll illustrate the many ways that masked Autism can present and explain why so many of us never realize we have a pervasive disability until relatively late in life. I’ll discuss how painful a lifetime of masking can be, and point to data showing it takes a real toll on our mental, physical, and relational health. Most important, this book will outline strategies a masked Autistic person can take to stop hiding their neurodiverse traits, and describe what a world more accepting of neurodiversity might look like. My hope is that one day, each of us can accept ourselves as the wonderfully weird, mold-breaking individuals we truly are, and live as ourselves, without fear of ostracism or violence. I’ve spoken to a variety of Autistic educators, therapists, coaches, and writers to help develop these resources, have tested them in my own life, and interviewed Autistic people who’ve used them to improve their own lives. These experiences provide concrete examples of what an unmasked (or less-masked) existence really looks like. When you stop judging yourself according to the neurotypical gaze, everything from your relationship norms and daily habits, to the way you dress yourself and design your home is free to change. A life less trapped under the mask is possible for each of us. But building such a life can be extremely daunting. When we think about why we started masking in the first place, it tends to bring up a lot of old pain. One of the coaches and disability advocates whose work has helped to inform this book, Heather R. Morgan, stressed to me that before we examine our masks and learn to take them off, we must first recognize that the version of ourselves we’ve been hiding from the world is somebody we can trust. “I think it can be risky for people to try to think about where their mask comes from and think about taking the mask off before they first know that there’s somebody safe underneath of it,” she says. “Even talking about unmasking if we don’t have a safe place to land can be terrifying.” In my own life and in the lives of the Autistic people I interviewed for this book, I’ve seen proof positive that the process of unmasking is worth it. But if you’re just starting out on this journey, and you’re feeling adrift and confused about who you really are, you might not yet believe there’s a worthwhile version of you waiting on the other side. You might still be haunted by negative media images of Autism or be worried that unmasking might make you less functional, too strange, or somehow impossible to love. You probably also recognize that there are real, material risks to letting your disability be visible, particularly if you occupy a marginalized position in society. You might associate authenticity with being unsafe for incredibly rational reasons, and not be sure how and when unmasking could be worth it for you. So, let’s first take a moment to consider the positive sides of unmasking, and what a less inhibited life might look like for you. Below is an exercise developed by Heather R. Morgan, which she administers to clients on their very first meeting together. It is designed to help masked people develop more trust in themselves and consider the existence of something beautiful on the other side of the mask. ### Values-Based Integration Process **Step 1: Find Your Why** * **Instructions**: Think of five moments in your life when you felt like you were FULLY ALIVE. Try to find moments from throughout your life (childhood, adolescence, adulthood; school, work, vacation, hobbies). * Some of the moments might leave you with a sense of awe and wonder—“wow, if all of life was like that, life would be amazing!” * Some of the moments might leave you feeling deeply recharged and ready to face the next challenge, or satisfied and fulfilled. * Write down each of these moments. Tell the story of each moment in as much detail as possible. Try to think specifically about why the moment stuck with you so dramatically. > To download this chart, go to http://prhlink.com/9780593235249a009. It may take you some time to complete this exercise. You can spend days or even weeks reflecting on it, making sure you recall moments from a variety of settings and time periods. We’ll return to these moments later in the book, but for now, you can just bask in how good it feels to recall whatever examples do come to mind. As we discuss the systemic forces that lead so many of us to mask, and explore how masking harms Autistic people’s lives, you may find it helpful to return to these memories from time to time, and draw strength from them. Let your memories serve as a reminder that you are not broken, and that the blueprint for building a worthwhile, authentic life already exists within you. [^0.1]: Thomas, P., Zahorodny, W., Peng, B., Kim, S., Jani, N., Halperin, W., & Brimacombe, M. (2012). The association of autism diagnosis with socioeconomic status. Autism, 16(2), 201–213. [^0.2]: Hull, L., Petrides, K. V., & Mandy, W. (2020). The female autism phenotype and camouflaging: A narrative review. Review Journal of Autism and Developmental Disorders, 1–12. [^0.3]: “Interview with Temple Grandin.” January 2, 2006. Retrieved April 14, 2019. [^0.4]: Petrou, A. M., Parr, J. R., & McConachie, H. (2018). Gender differences in parent-reported age at diagnosis of children with autism spectrum disorder. Research in Autism Spectrum Disorders, 50, 32–42. [^0.5]: Livingston, L. A., Shah, P., & Happé, F. (2019). Compensatory strategies below the behavioural surface in autism: A qualitative study. The Lancet Psychiatry, 6(9), 766–777. [^0.6]: https://www.cdc.gov/mmwr/volumes/69/ss/ss6904a1.htm?s_cid=ss6904a1_w. [^0.7]: Cage, E., Troxell-Whitman, Z. (2019). Understanding the Reasons, Contexts and Costs of Camouflaging for Autistic Adults. Journal of Autism and Developmental Disorders 49, 1899–1911, https://doi.org/10.1007/s10803-018-03878-x. [^0.8]: Livingston, L. A., Shah, P., & Happé, F. (2019). Compensatory strategies below the behavioural surface in autism: A qualitative study. The Lancet Psychiatry, 6(9), 766–777. [^0.9]: Cassidy, S. A., Gould, K., Townsend, E., Pelton, M., Robertson, A. E., & Rodgers, J. (2020). Is camouflaging autistic traits associated with suicidal thoughts and behaviours? Expanding the interpersonal psychological theory of suicide in an undergraduate student sample. Journal of Autism and Developmental Disorders, 50(10), 3638–3648.