# Chapter 5 - Rethinking Autism * [CHAPTER 5](#chapter-5) * [Rethinking Autism](#rethinking-autism) * [Reframing Autism Stereotypes](#reframing-autism-stereotypes) * [Reframing Autistic Stereotypes](#reframing-autistic-stereotypes) * [Celebrating Special Interests](#celebrating-special-interests) * [Special Interest Week](#special-interest-week) * [Rediscovering Your Values](#rediscovering-your-values) * [Values-Based Integration](#values-based-integration) * [Feeling Gratitude for Your Autism—and Your Past](#feeling-gratitude-for-your-autismand-your-past) --- # CHAPTER 5 ## Rethinking Autism Let’s start at the beginning: the first step of the unmasking process is realizing you’re Autistic. It might not feel like it’s an active step toward self-acceptance or authenticity, but coming to understand yourself as disabled is a pretty dramatic reframing of your life. Almost every neurodiverse person I’ve spoken to for this book shared that discovering they were Autistic was a powerful aha moment, one that prompted them to rethink every narrative they’d believed about who they were. Painful labels they’d carried around inside themselves for years suddenly didn’t seem as relevant: it wasn’t that they were stupid, or clueless, or lazy, they were just disabled. It wasn’t that their efforts had never been enough, or that they were fundamentally wrong or bad. They simply hadn’t been treated with the compassion they deserved, or given the tools that would have allowed them to flourish. Naming their position in society as a disabled person helped them to externalize that which had long been internalized. It proved that none of their suffering had been their fault. Of course, adopting an Autistic identity doesn’t instantly undo the habitual camouflaging and compensation that so many of us have had to default to. Much like the hypervigilance that’s common to trauma survivors with PTSD, masking is a reflex that comes out most intensely when we experience uncertainty or social threat. And recognizing oneself as a disabled person certainly doesn’t make the world seem any less confusing or threatening. However, accepting ourselves as Autistic does free many of us (perhaps for the first time) to question whether it’s fair that we be expected to live in such a concealed, apologetic way. The process of unmasking is all about rethinking the beliefs and behaviors that seemed normal prior to discovering we were Autistic. It means reexamining the stereotypes about Autistics (and other disabled people) we’ve been exposed to via media, education, and formative experiences in our youth. It requires we question society’s most deeply cherished values, and notice where there are gaps between what we’ve been told we should be, and how we’d actually like to live. Finally, unmasking demands that we look back on our past selves with a spirit of grace, gradually learning to see that the sides of ourselves that we were told were too loud, too stilted, too weird, or too much are actually completely fine, even wonderful, and absolutely deserving of love. ### Reframing Autism Stereotypes A few years ago, Trevor was out camping with his friends in the Ozarks. Everybody was getting a little drunk, whipping one another with T-shirts and goofing off. Somebody suggested the group hold an impromptu “forearm beauty” pageant. Everyone laughed and stared at Trevor. A hush settled over the group. Trevor pretended to be bashful, then slowly strutted to the center of the crowd. He rolled up his sleeves slowly, almost seductively, and then struck a dramatic pose like something straight out of a comic book, putting his disproportionately large, muscular forearms on display for everyone to see. People oohed and aahed at the sight, and Trevor’s roommate fanned himself as if he was going to faint. “It’s an in joke in the friend group,” he explains. “I have really huge forearms. Like Popeye. From flapping my hands all the time.” Trevor has always regulated and expressed his emotions by flapping and fluttering his hands. Hand flapping is one of the most common Autistic stims. It’s such a well-known, visible sign of Autism that training children to have “quiet hands” is one of the foremost goals of ABA therapy.[^5.1] Though hand flapping is harmless and not disruptive, neurotypical people recognize it instantly as a sign of disability—and therefore punish it harshly. People imitate Autistic hand flapping when they want to imply a disabled person is stupid, annoying, or out of control. Donald Trump famously did a cruel imitation of hand flapping during his 2016 campaign, while criticizing a physically disabled reporter. But in recent years, despite all the social baggage, Trevor has learned to embrace his flaps. Trevor came out as Autistic to his friends a few years ago. He’s forty-five now, but has known about his disability since he was twelve. When he was diagnosed, Trevor’s mom told him it had to remain a secret for the rest of his life. She believed that people would underestimate him and exclude him if they knew he “lacked” many of the skills neurotypical folks had. For decades, Trevor dutifully hid his stims and tendency to overthink things. In college, he took improv classes to help seem more outgoing. He read books on manners, and left dates early, so the guys he was seeing wouldn’t notice he had a hard time speaking when he was tired. Eventually, as the Autism acceptance movement became more visible, Trevor began questioning his mother’s old advice. He poked around forums like reddit’s r/AutismTranslated and read the stories of people who’d come out as neurodiverse. On the website Stimtastic, he found chewable rubber jewelry (or “chewelry”) designed for stimming, and secretly ordered some for himself. Telling his friends about his Autism ended up being kind of anticlimactic. “They were not surprised,” he said laughing. “At all. They really know me.” Before coming out, Trevor couldn’t explain to people why his forearms were so beefy. It was just another odd thing about himself that he felt self-conscious about. He wasn’t a muscular guy. Like many Autistics,[^5.2] Trevor had a reduced muscle tone relative to most of the neurotypicals he knew. He walked with a hunched posture and had reedy upper arms. Big button-up shirts helped hide his uniquely Autistic body. But once Trevor was “out,” he could let people admire and joke about his buff arms. He was shocked that people actually found them attractive. He’s not self-conscious about his body or his stimming anymore. All the mental energy he once placed on obscuring his disability is freed up to focus on other things. And the fear of detection that his mother imbued in him has proven to be entirely misguided. In previous chapters, we’ve reflected on the common reactions neurotypical people have when they first encounter visibility-disabled traits in a child and contemplated the many negative stereotypes about Autism that cause us shame and drive us to mask. Here we’ll reexamine those early experiences and stereotypically Autistic traits and consider whether they can be viewed in a more neutral or even positive light. In the book Raising Your Spirited Child, author and parent educator Mary Sheedy Kurcinka encourages frustrated and exhausted caregivers to rethink negative impressions they have of their children.[^5.3] Kurcinka wasn’t specifically discussing Autistics when she coined the term spirited child in the early 1990s, but it’s pretty clear that her own spirited son has a lot in common with Autistic kids. Much like the term indigo child (which has been popular with New Age parents for decades),[^5.4] spirited child refers to a somewhat vague constellation of behaviors and traits that overlap a great deal with Autism and ADHD. Parents of children with Autism-spectrum traits often try to find (or invent) a softening euphemism for their child’s differences. It’s label avoidance, with a bit of a spiritual sheen. In Kurcinka’s case, branding her son as spirited was an attempt to resist the stigmatizing attitudes that doctors and psychiatrists had about him and his future. Professionals viewed Kurcinka’s spirited son as stubborn, difficult, and strong-willed; he was prone to loud shrieking and intense reactions to stimuli, and defiant in the face of instructions he didn’t want to follow. Kurcinka did some research of her own and found that all the writing available to parents about kids like her son focused on how challenging they were to raise, and the toll they had on their caregivers. The early 1990s were an era when people commonly believed that a kid’s Autism ruined their family’s lives. An oft-quoted (and entirely incorrect)[^5.5] statistic from that period claimed that parents of Autistic children had a divorce rate of 80 percent.[^5.6] Neurodivergence was a horror that visited families, and disabled children were resented for bringing it into the home. Dismayed by the poor quality of information available, Kurcinka set out to create resources that were more compassionate and looked to the behavior of spirited children with curiosity instead of condemnation. Kurcinka asked that parents try to reframe their kids’ “problem” traits as positives. Many of a kid’s most disruptive behaviors were signs of their independence and will. As disability advocate Rabbi Ruti Regan writes on the blog Real Social Skills, “noncompliance is a social skill.”[^5.7] It’s only “bad” if you’re looking at it from the outside, from the perspective of someone who seeks to control or restrict. Though Autistic people are stereotyped as lacking empathy, it’s frequently non-Autistic teachers and caregivers of Autistic children who fail to reflect on their interior experience, and the motives and feelings that make their behavior make sense. A noncompliant child may be stressful to raise, but if you want your kid to become a strong, healthy person with the power to self-advocate, it’s crucial they know how to stand up for themselves and say “no.” Here are some of the old, stigmatizing labels of “spirited” children that Kurcinka set out to challenge, and the more positive alternatives she recommended: | Old Label | New Label | | ------------- | --------------------------------------- | | Stubborn | Assertive, Persistent | | Wild | Energetic | | Distractible | Perceptive | | Picky | Selective, Discriminating | | Demanding | Knows clearly what he wants | | Inflexible | Traditional; does not like change | | Manipulative | Knows how to get needs met, charismatic | | Anxious | Cautious | | Explosive | Dramatic | | Nosy | Curious, Inquisitive | | Loud | Enthusiastic, Zestful | | Argumentative | Opinionated, Committed | You might have noticed that some of the traits listed in Kurcinka’s table were also in the lists of negative Autism stereotypes earlier in this book. I developed the tables in Chapter 3 long before reading Kurcinka’s book, based on feedback from a large pool of Autistic adults. It turns out many Autistic adults’ least liked personal qualities are the exact same traits caregivers were complaining about in their children thirty years ago, at the time Kurcinka was writing. These tables might have been developed independently of one another, but they are clearly in conversation. When many of us were growing up, adults saw us as loud, stubborn, uncaring, overly reactive, and burdensome. We’ve grown up believing we truly are hard to be around, and to love. When a person from a highly stigmatized group absorbs and believes some of the negative stereotypes applied to their group, they’re suffering from what researchers call self-stigma. Self-stigma is heavy; people high in it experience reduced self-esteem and see themselves as less capable than other people, and they’re often afraid to seek help.[^5.8] Psychologists have studied how to reduce self-stigma in people with mental disorders like depression, anxiety, and schizophrenia for decades; however, there is essentially no research into how to reduce self-stigma in Autistics. What little data does exist is on helping the abled family members of Autistic children to feel less shame about being related to someone disabled.[^5.9] Since there’s a dearth of research examining self-stigma reduction in Autistics, we have to look to the data on treating internalized stereotypes in other populations. A review by Corrigan, Kosyluk, and Rush (2013) concluded that for a variety of people with mental illnesses, coming out proudly about one’s disability and presenting it as a valuable part of one’s identity helped reduce self-stigma’s impact.[^5.10] A more recent experimental study by Martinez-Hidalgo and colleagues (2018) paired people with stigmatized mental illnesses with neurotypical conversation partners for a series of workshops, where they discussed mental health as well as other topics like creativity.[^5.11] At the end of the intervention, participants with mental illness reported less shame about their conditions, and their neurotypical partners’ biases against people with mental illness went down a bit, too. This study did include some Autistic participants, though the sample was a very diverse array of people of other neurotypes as well, but the results are promising. In general, most research does show that proudly owning one’s disability can have a big impact on how people feel—and it can change the attitudes of the neurotypical people around us. It’s heartening to witness how fellow masked Autistics take proud ownership of traits they once deeply disliked and were taught to loathe: childishness, selfishness, stubbornness, being a robot. Looked at from another angle, childishness is joy and open curiosity. Selfishness is a vital protective skill. One interviewee told me that his stubbornness and moral clarity is what allowed him to be a whistle-blower when he discovered his company was violating customer privacy protections. There is some research suggesting that people who are used to being disliked and going against the social grain are more likely to speak out and blow the whistle on injustice.[^5.12] Bobbi, the “gender failure” I spoke to in Chapter 1, tells me they have learned to see their unique combination of rashness and sensitivity as a real superpower. Bobbi is an occupational therapist who works with young children. They say connecting with frustrated kids comes naturally to them because of their past, and their Autism. “When kids get told that they’re too sensitive, that their reactions to things are wrong, that really messes with them. But sensitive is not bad. If we were talking about a metal detector, sensitive would be good. Or a bomb-sniffing dog. You want a good instrument to be sensitive. Why is it bad to be very skilled at sniffing out the emotional bombs in the environment?” Bobbi was emotionally astute, even as a child. Their family disliked how skillfully they picked up on emotional manipulation, neglect, and abuse. “Sensitivity,” despite being a sign of attentiveness and discernment, is frowned upon when you’re good at detecting things people would rather you not see. Today, Bobbi is in a place where their sensitivity is seen as the boon it really is. They help children by using that sensitivity to recognize and resonate with their pain. Some Autistic experiences are unpleasant no matter how you look at them. Gastrointestinal issues are painful. Sensory overwhelm is an absolute torment. It’s very understandable that many Autistic folks (myself include) resent having these features of the disability. However, no personality traits or modes of thinking and feeling associated with Autism are innately bad. Usually we internalize messages that we’re bad, immature, cruel people only because the neurotypical people around us lacked the tools to look at our Autistic traits from the proper angle. In the table below are all the “negative” Autistic traits we explored back in Chapter 2, reframed to center on the Autistic person’s perspective. You can try adding your own reframes, or your own examples of how your “worst” traits have served your best interests. #### Reframing Autistic Stereotypes | I was told I was: | But actually I am: | I value this quality in myself because: | | ------------------- | ----------------------------- | --------------------------------------------------------------------------- | | Arrogant | Confident | • It helps me stand up for what’s right | | Principled | Independent | • I’m often the first person to speak out about a problem | | | | • I can set a positive example for others | | | | • | | | | • | | | | | | Cold & Unfeeling | Analytical | • I notice things others miss | | Rational | Thoughtful | • I don’t get swept away in the heat of the moment like others do | | | | • I’m good at noticing connections and systems others can’t see | | | | • | | | | • | | | | | | Annoying & Loud | Enthusiastic | • I am my own best advocate | | Alive | Outspoken | • I raise other people’s energy levels | | | | • I experience intense happiness and recognize beauty | | | | • | | | | • | | | | | | Childish | Curious | • I’m great at learning and growing | | Open-minded | Joyful | • I experience the full range of human emotion | | | | • I take pleasure from the small things in life | | | | • | | | | • | | | | | | Awkward | Authentic | • If something is hard for me, other people probably need help with it, too | | Unique | Don’t Blend in with the Crowd | • My way of moving through the world is entirely its own | | | | • I don’t conform to unfair standards | | | | • | | | | • | | | | | | Clueless, Pathetic | Reflective | • I recognize we all need one another | | Unassuming | Open About Vulnerability | • I know how to ask for the help I need | | | | • I value my connections to other people | | | | • | | | | • | | | | | | Sensitive | Perceptive | • I recognize mistreatment very well | | Emotionally Attuned | Compassionate | • I’m good at taking the emotional temperature of the room | | | | • I’m in touch with my feelings and with the feelings of others | | | | • | | | | • | | | | | | Weird | One of a Kind | • I make the world a bigger, broader place | | A Trailblazer | Unconventional | • I challenge old conventions and unfair rules | | | | • I’m the ultimate authority on how my life should be | | | | • | | | | • | > To download this chart, go to http://prhlink.com/9780593235249a005. Quite frequently, the traits that inconvenience or weird out neurotypical people are the very same ones that define who we are and help keep us safe. When we stop taking an outsider’s perspective of our own disability and instead center our own perspectives and needs, this becomes clear. It’s not actually a bad thing that we are spirited, loud, intense, principled, or strange. These traits are merely inconvenient to systems designed by abled people that don’t take our unique way of being into account. But the more we work to normalize our neurotype, and the more we loudly, proudly take ownership of our Autistic identities, the more institutions will be forced to change to accommodate us and others who have been repeatedly shut out. Another powerful step in the unmasking process is learning to reclaim our passions and special interests. Most of us have been stifling all our large feelings for years—not just distress and discomfort, but joy as well. By happily delving into our special interests and reveling in our Autistic capacity to hyperfocus, we can help retrain our brains to see our neurotype as a source of beauty rather than a mark of shame. ### Celebrating Special Interests Clara is obsessed with new wave and pop musicians from the 1980s. Her bedroom is packed floor to ceiling with old records; her walls are covered with concert posters from long before her birth in 1993. Clara has candy-apple red hair, and she wears thick leather platform boots, torn-up acid-wash jeans, thick pink lipstick, and flowy, androgynous black asymmetrical shirts. Clara’s favorite musician is the late Pete Burns of the band Dead or Alive, most famous for the song “You Spin Me Round (Like a Record).” She met Pete and got his autograph multiple times, and has watched every concert recording, interview, and reality TV show he ever appeared in. Clara has an Autistic special interest in Pete Burns, and engaging with that interest brings her immense pleasure. When she really likes someone, she opens up to them by reciting facts about Pete Burns’s many cosmetic surgeries and media controversies. When she gestures with her arms, a tattoo of Pete Burns’s face peeks out from under her T-shirt sleeve. When Clara went away to college a few years ago, she decided to hide her obsession with Pete Burns from her new classmates. She wanted to start out on the “right” foot, and not weird anybody out by being too fixated on the singer and reality TV star. So, she didn’t bring any of her records or posters with her. She covered her tattoo up with long-sleeved sweaters. All buttoned up and masked, she found it very difficult to make friends. “Every day was sort of empty,” she says. “Just going through the routine with nothing to land on.” After a year of this, Clara was painfully depressed and listless. Her grades were terrible and she had no appetite. With her parents’ encouragement, Clara transferred to a school closer to her childhood home, so she could go back to living in her bedroom, with access to all her Pete Burns stuff. She reconnected with online friends who were just as passionate about music and alternative fashion as she was, and gradually her life began to improve. “It was like coming back to life,” she says, “like a little plant standing up once it’s in the sun.” When it comes to special interests, Autistic brains are total sponges, absorbing facts and figures at a rate that seems kind of inhuman to neurotypical people. We can develop a special interest in nearly anything. Some of us learn to speak fluent Klingon; others memorize algorithms for solving Rubik’s cubes. My sister’s brain is a compendium of movie trivia and dialogue. My own special interests have included everything from bat biology to the history of the Tudor dynasty, to personal finance, to subreddits run by so-called men’s rights activists. Though the Diagnostic and Statistical Manual of Mental Disorders states that Autism is defined by having a “restricted” range of interests, some Autistic folks cycle through new special interests every couple of months and become polymaths in a variety of subjects. Others are steadfastly dedicated to one topic their entire lives. We don’t have control over what our special interests are, or when they appear or recede in our lives. Being obsessed with a person or topic isn’t a choice, and does not necessarily reflect our values or beliefs, hence my former classmate Chris’s experience of being bullied for being obsessed with World War II. I often find my special interests are a perverse fascination with a person or movement I find morally abhorrent. Though others might find it disturbing to read (for example) transphobic blogs for hours on end, I’ve found that studying such subjects is empowering and informative. Autistic people find it rejuvenating and stimulating to spend time learning about our special interests. In studies that examine the lives of Autistic adults, engaging with special interests is positively associated with subjective well-being.[^5.13] When we get to appreciate our hyperfixations, we feel happier and more satisfied with life. But for a long time, neurotypical researchers viewed special interests as an impediment to having a “regular” life. ABA therapists penalize Autistic children for speaking about them,[^5.14] withdrawing attention and affection when the subjects come up. This trains Autistic kids to hide their deepest joys, and avoid cultivating their passions. Punishing Autistic children for talking about their special interests is perhaps the most arbitrarily cruel element of ABA therapy. Most children have fanatical interests at one point or another, and in an adult, having an intense passion can bring a great deal of meaning and pleasure to life, as well as an opportunity to connect with like-minded people. However, ABA therapy is rooted in reinforcing the narrowest of social standards and pushing them on Autistic children, in hopes that a high degree of conformity will keep them “safe.” Being too passionate about a video game, comic book, or wild animal species is often viewed in society as childish or limiting, and so Autistic children are expected to hide their enthusiasm. Interestingly, adults are only shamed for having an obsessive interest if that interest is a bit too “strange,” and doesn’t come with the opportunity to rack up a lot of achievements or make a lot of money. People who routinely complete eighty-hour workweeks aren’t penalized for being obsessive or hyperfixated; they’re celebrated for their diligence. If an adult fills their evenings after work learning to code or creating jewelry that they sell on Etsy, they’re seen as enterprising. But if someone instead devotes their free time to something that gives them pleasure but doesn’t financially benefit anyone, it’s seen as frivolous or embarrassing, even selfish. In this instance, it’s clear that the punishing rules imposed on Autistic children reflect a much broader societal issue: pleasure and nonproductive, playful time are not valued, and when someone is passionate about the “wrong” things, that passion is discouraged because it presents a distraction from work and other “respectable” responsibilities. The mental health costs of preventing Autistic children from enjoying their special interests are immense. Having the freedom to develop and express special interests is linked to improved social, emotional, and even fine motor development.[^5.15] A survey of Autistic young adults by Teti and colleagues (2016) found that many use their special interests to develop emotional awareness skills and coping strategies.[^5.16] This frequently plays out in fandoms and nerdy communities, where neurodiverse people with mutual special interests find one another, socialize, and sometimes begin to unmask. In a study of internet habits, researchers Johnson and Caldwell-Harris (2012) found that Autistic adults actually had a greater variety of interests and more numerous interests than their non-Autistic peers, and made far more social media posts about their interest that were designed to provoke conversation, compared to neurotypical people.[^5.17] Autistic people are also a foundational part of most fandoms and conventions centered around shared hobbies—we devote a lot of energy to finding and creating spaces where we can interact with people who share our interests, and within nerdy fandom spaces, social norms tend to be more forgiving and relaxed. It turns out that special interests aid us in becoming more outgoing, well-rounded individuals. In 2020, Autistic self-advocate Jersey Noah developed Special Interest Week, a weeklong series of reflection prompts posted to social media, which were designed to help Autistic people reflect and share about the things that bring us joy. So much of the writing Autistic people post online focuses on our frustrations and experiences of being excluded and misunderstood. Online, Autistic adults are commonly expected to educate non-Autistic people about what our neurotype really is like, and to debunk all the misinformation allistics have passively absorbed (and projected onto us) all our lives. Jersey created Special Interest Week in order to give Autistic people a bit of a breather from all this heavy educational and emotional lifting. In essence, they were creating a kind of anti-ABA therapy, encouraging neurodiverse people to infodump about our obsessions as loudly as we wanted without worry about neurotypical people’s expectations or needs. I consulted with Jersey when they were developing the prompts for Special Interest Week, as did several other Autistic creators, including Matt and Brandy Haberer, who host the disability podcast The Chronic Couple. In October 2020, the first Special Interest Week ran on Instagram, with the accompanying hashtag #AutieJoy. Hundreds of Autistic people participated, posting photos of their hat collections, video game achievement spreadsheets, and beaded earrings they had made. It was cathartic to read these stories and share how my hyperfixations shaped my life for the better, too. Below is an adapted version of Jersey Noah’s Special Interest Week prompts, which you can use either privately or on a blog or social media platform, to reflect on your own passions and what they’ve meant to you. #### Special Interest Week:[^5.18] Seven Prompts to Help You Reflect on Autistic Joy Instructions: Every day for a week, set aside some time to reflect on one of the prompts below. In the fields provided, you can doodle, write about the topic, or even paste in photos relevant to the special interest. You may also wish to track down physical reminders of these special interests. Try listening to a record you used to love, for example, or sorting through an old drawer of collectibles. Whatever helps you connect to a powerful sense of Autistic Joy! * Day 1 - Your Oldest Special Interest * Day 2 - Your Most Recent Special Interest * Day 3 - A Special Interest That’s Changed or Grown Over Time * Day 4 - A Special Interest That Is Collected/Collections * Day 5 - The Special Interest That Has Shaped Your Life the Most * Day 6 - A Special Interest You Share with Someone * Day 7 - A Day for Embracing and Celebrating Special Interests. What’s something positive your special interests have brought to your life? > To download this chart, go to http://prhlink.com/9780593235249a006. Reflecting on your special interests may leave you feeling exhilarated, empowered, or hopeful, just as Heather Morgan’s Key Moments exercise (provided in the introduction to this book on page 14) was also designed to do. Masking is a practice of silencing ourselves and letting neurotypical expectations dominate our actions, rather than being guided by our core personal values. But when we drill down into what makes us feel happy, stimulated, and fully alive, we can identify who we really are, and what our lives ought to look like. In the next section, we’ll revisit our Key Moments from that earlier exercise, and see what those moments have to say about who we are and what we value most. ### Rediscovering Your Values “Autistic people absorb a lot of messages that tell us, oh, that’s not allowed, I can never be good enough, the rules are different for me than for anyone else,” Heather Morgan says. “And we can deconstruct those messages by asking, well, what do my values have to say about that?” For a long time, Heather believed the rules other people were expected to follow were fundamentally different than the rules that applied to her. She was trying to fit within the lines neurotypical people had drawn for her, but her efforts all seemed to fail. The instructions she was given didn’t line up with people’s actual (unspoken) expectations. It was paralyzing. Eventually, she decided to stop focusing on what others desired from her, and let her life be guided by her actual values. That’s when she first developed her Values-Based Integration exercise, which she’s now led many Autistic clients through. In the introduction of this book, I encouraged you to complete the first stage of the Values-Based Integration process, conjuring up the memory of five “key moments” in your life where you truly felt alive. One of the goals of this exercise is to help you nurture a sense of trust in your instincts and desires. The unique qualities and feelings associated with each of your key moments can also help you figure out what it is that you value most in life. In order to name what your values are, you can look back on these memories and try to articulate exactly why each of them was so special. “Once you have finished telling each of your five stories,” Heather Morgan writes,[^5.19] “go back and look for the key words that describe each story. Most stories will have at least two or three key words, and some key words will be repeated between stories.” Suppose, for example, that one of the key moments that came to mind for you was your wedding day. What felt especially poignant about that day? Was it being surrounded by all of your loved ones? Was it the connection you felt toward your partner? Did you enjoy the attention? The celebration? Try to identify what made that time really stand out and do so without passing any judgment. Notice any words that appear multiple times, across multiple memories. Try to dig a little deeper and use values-based words (such as connection, family, creativity, or generosity) to describe those special experiences. #### Values-Based Integration:[^5.20] Identifying Your Values Instructions: To complete this activity, you will need to refer to the Key Moments exercise you completed in the introduction of this book (page 14). Review those memories and try to list key words that describe each moment and why it was special to you. Most stories will have at least two or three key words, and some key words will be repeated between stories. Feel free to list as many words as you like, until you identify ones that really capture your feelings. * Moment 1: * Key words that describe why this moment was special: * Moment 2: * Key words that describe why this moment was special: * Moment 3: * Key words that describe why this moment was special: * Moment 4: * Key words that describe why this moment was special: * Moment 5: * Key words that describe why this moment was special: Try to identify which of the words you listed above are the most important or resonant. Look to see if any words can be grouped together, or if there is a single word that sums up an idea for you. You can list key words and try grouping them together here: > To download this chart, go to http://prhlink.com/9780593235249a008. Our key memories and the words we use to describe them can help us understand what matters most to us and offer up a valuable contrast between the way we currently are living and the life we’d like to build. To help illustrate this process and some of the conclusions that can come from it, let me offer one of my own key moments. In the summer of 2019, I was walking home through Wrigleyville, the sports-bar-laden Chicago neighborhood surrounding the Cub’s Wrigley Field. There was a pub crawl going on, so a lot of drunk people were ambling from bar to bar. As I walked past a quiet side street, I saw a woman walking away from a visibly drunk, staggering man. She kept nodding and smiling but trying to walk away, and seemed deeply uncomfortable. The man kept stumbling toward her and yelling for her attention. I decided to stop what I was doing and follow the pair down the street. I watched for a while as the woman tried to put some distance between herself and the man, who keep towering over her and asking her questions. Her mannerisms were placating and disarming. He kept putting his arms around her shoulders and she kept slipping out from under him. After a few moments, I saw the man escalate, and put his hand on the woman’s lower back. She tensed up. His hand wandered lower onto the seat of her jeans. My instincts kicked into gear. “Leave her alone, dude,” I yelled out, racing up to meet them. The man stiffened. “Let her go.” He looked back at me, his eyes bleary, and slowly said, “We’re fine.” “You need to stop touching her,” I said in a low, authoritative voice. I put my body between hers and his. “You just stay here with me until she has gone on her way.” He grimaced at me and slurred the words, “You leave us alone.” “No, dude. You’re going to leave her alone. You’re going to stay here, with me, until she gets far away.” He was visibly angry and for a moment I thought I was gonna get punched. Yet I had no fear. I felt totally in control of the situation. I continued telling him to stay put, my voice now at full volume so others in the neighborhood could hear. The guy was definitely furious, but he stood there with me, staring me down, swaying menacingly, until the woman got to her apartment about a half a block away, closed the door, and locked herself inside. “Get out of here,” I told the guy when it was over. “You go walk the other way.” I stayed put until he was long gone. Most of my life, I have lacked courage and clarity of purpose. I hesitate, second-guess myself, worry that I’ll embarrass someone. I often tell myself I’m misreading the situation I’m in, or that I don’t have the power to fix the injustices I see around me. I also tend to put my own well-being before that of others, because I don’t trust that anyone else will ever value me. In this instance, I wasn’t burdened with any of that doubt, or that cowardice. I stood up for what was right, even though doing so was “awkward” and also might have gotten me hurt. I made a judgment call and used my wonderful Autistic arrogance to take charge. When I contrast that strong, confident version of me with the nervous, smiling, restrained-to-a-fault person I often am when I’m masking, I can see exactly where my values lie, and how my mask blocks me from being my authentic self. When I let the fear of seeming “weird” or “rude” drive me, I fail others as well as myself. When I focus only on protecting myself, I forget how strong I am, and how wonderful it feels to care for other people. That experience taught me that I value protecting other people and being principled and courageous more than I value fitting in or being invisible—but that I am often tempted to succumb to those desires anyway. When I listen to my values, my life is more fulfilling and meaningful. I feel more powerful, and less stuck. This memory also illustrates for me that it’s my Autism, not my mask, that helps me live in accordance with my beliefs. I was able to step in and help that woman because I was willing to make the situation awkward, and I was stubborn and forceful enough to stand my ground in the face of aggression and intimidation. These qualities might at times make me inconvenient to neurotypical people, but sometimes getting in the way is exactly the right thing to do. ### Feeling Gratitude for Your Autism—and Your Past So far in this chapter, we’ve worked on rethinking unfair beliefs we have internalized about Autism, and about ourselves. This can be an empowering process, but it comes with some melancholy as well. You might find yourself looking back on all the years you “wasted” masking and regret how you let shame and social judgment shape you. To help work through those challenging feelings, it’s useful to extend a little self-gratitude your own way, and take stock of the positive impact Autism has already had on your life. Being Autistic in a neurotypical world is often traumatizing,[^5.21] and being forced to mask is essentially an experience of society-driven abuse. Though you may sometimes wish that life had been different or that you hadn’t been made to suffer, your disability isn’t to blame for what happened, and neither are you. It was a far-reaching, centuries-old system of injustice that left you in such a difficult spot. Even knowing that, you might feel immense regret about the way life has gone so far. But psychological research shows that extending gratitude to your past, trauma-surviving self is a powerful means of healing.[^5.22] Quite often, people who have coped with trauma in imperfect ways experience a fragmentation of selfhood. They see different feelings and behaviors as almost distinct parts of themselves, rather than an integrated whole they can make sense of and have control over. The person they were at school may not line up with who they had to pretend to be at home. They may have needed to create a complex tapestry of social fictions to keep their lives together. It’s easy to feel shame about having coped in that way. But extending gratitude to your past self and taking stock of how Autism has shaped your life (even when you were trying to hide it) may help you to feel more unified, as well as more accepting of the way things were. My friend James Finn is a novelist, former Act Up activist, and retired defense analyst with the U.S. Air Force. He’s worn many hats in his fifty-eight years of life, and all of them have been well suited to his focused, observant Autistic nature. He was only diagnosed ten years ago, so for most of his life he didn’t know why he was so adept at scanning through facts and developing systems that helped organize them, or why he could absorb new languages like a sponge. He just naturally gravitated to work that gave him ample time to sit alone, processing information. “The Air Force is probably going out and recruiting Autistic analysts,” he tells me. “I mean if they’re not, they ought to be. I could geek out on studying data sets and making connections and just live in my office, it was wonderful. If it weren’t for the FBI coming in and doing random polygraphs one year and me having to lie about being gay, I probably would have stayed in the military.” After leaving the Air Force in the 1980s, James took a job doing translation work for the United Nations. As the AIDS crisis began to intensify, he became involved with an HIV/AIDS service agency, where he got to help queer people and intravenous drug users. He lived in New York and remained highly engaged in Act Up activism until the late 1990s, when the fight against AIDS was finally beginning to look less bleak. From there, James moved to Montreal to live with a boyfriend, and began working in sales. He spent his downtime learning French, obsessively writing and rewriting translations in a notebook. “And that is actually one of the things that tipped my therapist off I might be Autistic,” James says. “I had five notebooks that were filled with French phrases on one side, translated three different ways into English on the other side. I told my therapist this and he gave me this look and raised his eyebrows like, I’m sorry, what?” James got assessed pretty quickly thereafter, and found out that he was, in fact, Autistic. The previous forty-eight years of his life instantly made sense. At his sales job, James used to spend hours typing out transcripts of hypothetical dialogue, gaming out every possible way the conversation might go. That way, no matter what someone said, he’d have prepared a way to respond. Today, his fiction readers tell him he’s fantastic at writing dialogue, and really understands how other people speak and feel. But it’s not because these things come naturally to him. He devoted thousands of hours to picking conversations apart to make sense of them. “Autism has caused me a lot of challenges throughout my life and a lot of times I don’t like it,” James says. “But without it I wouldn’t have been the manager of an HIV service organization. I wouldn’t have written novels. I wouldn’t have learned French. So, even though sometimes I feel lonely and even though sometimes I feel like people misjudge me, it’s all kind of worth it, too.” I hear this kind of thinking expressed by Autistic people a lot, especially those who have found community alongside other neurodiverse people and have had time to make peace with who they really are. After the initial shock of realizing you have a hidden disability, there are often waves of acceptance and relief. In Autistic self-advocacy circles, the question of whether we’d take a pill that magically “cures” Autism often comes up. The vast majority of people in our community reject that question out of hand, because Autism is a core part of who we are, impossible to separate from our personalities, talents, preferences, and general outlook. We wouldn’t be the same people without it. Being Autistic has fundamentally shaped James Finn’s life, his career, where’s his lived, his relationships, and his passions, just as being a gay man has. It’s not really possible to imagine a James Finn that lacks these traits and is still recognizably him. For my part, I know that without Autism I wouldn’t have completed my PhD at age twenty-five; I wouldn’t have memorized thousands of song lyrics, befriended dozens of genderqueer weirdos with nerdy interests, or written anywhere near as many words as I have. If Autism hadn’t made it hard for me to drive, I might not have moved to Chicago. I might have chosen to live in a city without public transit, and wouldn’t have met my partner of over a decade. Each aspect of who I am is tightly interwoven with the rest, and on good days I love myself enough to be grateful for almost every single one. To wrap up this chapter, I’d like to ask you to reflect on the meaningful things Autism has already brought into your own life. These positives don’t have to be respectable by neurotypical standards. Most of us aren’t genius savants, and our worth should not be measured by our ability (or inability) to meet conventional benchmarks of success. What’s really important here is to focus on how neurodiversity has brought pleasure, connection, and meaning to your life. Autism cannot be “cured,” and most people in the Autism self-advocacy community eventually come to see that fact as a blessing, because Autism is so core to their existence, and integral to becoming the wonderful people that they are. * Thanks to Autistic hyperfocus, I’ve developed these skills: * Thanks to my special interests, I’ve learned a lot about these subjects: * If I wasn’t Autistic, I never would have gotten to know these people who are important to me: * If I wasn’t Autistic, I never would have had these experiences: * If I wasn’t Autistic, I wouldn’t have these awesome personality traits: * Being Autistic is hard, but it has made me resilient in these ways: > To download this chart, go to http://prhlink.com/9780593235249a004. Self-stigma is a liar; you’re not cringey, “too much,” a baby, or a cold-blooded creep. You’re a marginalized person with many beautiful and unique qualities. Your needs are value-neutral, and your emotions are helpful signals to respond to that don’t merit any shame. Autism has always been a powerful driving force in your life, often for the better, even when you did not know that it was there. Now that you do know it’s there, you can work on accepting and loving the person you have always been beneath your mask, and practice sharing that version of you with the world. Unmasking doesn’t happen in one big burst of confidence; it’s a gradual process of relaxing your inhibitions, trusting your feelings, and letting go of compensatory strategies that no longer suit you. In the next chapter, we’ll look at ways you can reduce the camouflaging and compensating that you do, reject neurotypical expectations, and construct a lifestyle that centers your neurotype instead of downplaying it. [^5.1]: https://www.spectrumnews.org/opinion/viewpoint/stimming-therapeutic-autistic-people-deserves-acceptance/. [^5.2]: Ming, X. Brimacombe, M., & Wagner, G. (2007). Prevalence of motor impairment in autism spectrum disorders. Brain Development, 29, 565–570. [^5.3]: Kurcinka, M. S. (2015). Raising Your Spirited Child: A Guide for Parents Whose Child Is More Intense, Sensitive, Perceptive, Persistent, and Energetic. New York: William Morrow. [^5.4]: Waltz, M. (2009). From changelings to crystal children: An examination of ‘New Age’ideas about autism. Journal of Religion, Disability & Health, 13(2), 114–128. [^5.5]: Freedman, B. H., Kalb, L. G., Zablotsky, B., & Stuart, E. A. (2012). Relationship status among parents of children with autism spectrum disorders: A population-based study. Journal of Autism and Developmental Disorders, 42(4), 539–548. [^5.6]: https://www.washingtonpost.com/outlook/toxic-parenting-myths-make-life-harder-for-people-with-autism-that-must-change/2019/02/25/24bd60f6-2f1b-11e9-813a-0ab2f17e305b_story.html. [^5.7]: https://www.realsocialskills.org/blog/orders-for-the-noncompliance-is-a-social-skill. Retrieved January 2021. [^5.8]: Corrigan, P. W., Rafacz, J., & Rüsch, N. (2011). Examining a progressive model of self-stigma and its impact on people with serious mental illness. Psychiatry Research, 189(3), 339–343. [^5.9]: See Liao, X., Lei, X., & Li, Y. (2019). Stigma among parents of children with autism: A literature review. Asian Journal of Psychiatry, 45, 88–94. I have conducted a thorough literature review and found numerous studies on self-stigma reduction for people who are not actually Autistic, but merely related to someone Autistic, and the above review lists some of the most seminal papers. At the time of this writing I can find no papers on self-stigma reduction for the actual members of the stigmatized group—Autistic people ourselves. [^5.10]: Corrigan, P. W., Kosyluk, K. A., & Rüsch, N. (2013). Reducing self-stigma by coming out proud. American Journal of Public Health, 103(5), 794–800. [^5.11]: Martínez-Hidalgo, M. N., Lorenzo-Sánchez, E., García, J. J. L., & Regadera, J. J. (2018). Social contact as a strategy for self-stigma reduction in young adults and adolescents with mental health problems. Psychiatry Research, 260, 443–450. [^5.12]: There is some research that suggests that Autistic people make for good whistle-blowers: effective whistle-blowers tend to be comfortable with being disliked, and have a firm sense of morality that isn’t influenced by social pressure. See for example Anvari, F., Wenzel, M., Woodyatt, L., & Haslam, S. A. (2019). The social psychology of whistleblowing: An integrated model. Organizational Psychology Review, 9(1), 41–67. [^5.13]: Grove, R., Hoekstra, R. A., Wierda, M., & Begeer, S. (2018). Special interests and subjective wellbeing in autistic adults. Autism Research, 11(5), 766–775. [^5.14]: Dawson, M. The Misbehaviour of the Behaviourists: Ethical Challenges to the Autism-ABA Industry. https://www.sentex.ca/~nexus23/naa_aba.html. [^5.15]: Grove, R., Hoekstra, R. A., Wierda, M., & Begeer, S. (2018). Special interests and subjective wellbeing in autistic adults. Autism Research, 11(5), 766–775. [^5.16]: Teti, M., Cheak-Zamora, N., Lolli, B., & Maurer-Batjer, A. (2016). Reframing autism: Young adults with autism share their strengths through photo-stories. Journal of Pediatric Nursing, 31, 619–629. [^5.17]: Jordan, C. J., & Caldwell-Harris, C. L. (2012). Understanding differences in neurotypical and autism spectrum special interests through internet forums. Intellectual and Developmental Disabilities, 50(5), 391–402. [^5.18]: Special Interest Week concept and #AutieJoy tag by Jersey Noah, prompts developed by Jersey, myself, and many other Autistic self-advocates, table instructions by me. [^5.19]: https://poweredbylove.ca/2020/05/08/unmasking/. [^5.20]: Table and activity adapted from Heather Morgan’s Values-Based Integration exercise. [^5.21]: Haruvi-Lamdan, N., Horesh, D., Zohar, S., Kraus, M., & Golan, O. (2020). Autism spectrum disorder and post-traumatic stress disorder: An unexplored co-occurrence of conditions. Autism, 24(4), 884–898. [^5.22]: Fisher, J. (2017). Healing the Fragmented Selves of Trauma Survivors: Overcoming Internal Self-Alienation. New York: Taylor & Francis.